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Alternate models of women's health care policy in the United States

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Alternate models of women's health care policy in the United States

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Content ALTERNATE MODELS OF WOMEN’S HEALTH CARE POLICY IN THE UNITED STATES by Suzanne Jane Anderson A Dissertation Presented to the FACULTY OF THE GRADUATE SCHOOL UNIVERSITY OF SOUTHERN CALIFORNIA In Partial Fulfillment of the Requirements for the Degree DOCTOR OF POLITICAL SCIENCE December 1998 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. UNIVERSITY OF SOUTHERN CALIFORNIA TH E GRADUATE SCHOOL UNIVERSITY PARK LOS ANGELES. CALIFORNIA 90007 This dissertation, written by under the direction of hS.x.:.... Dissertation Committee, and approved by all its members, has been presented to and accepted by The Graduate School, in partial fulfillment of re quirements for the degree of <r~ h i. . V . . j.), .C j. . O v£ . DOCTOR OF PHILOSOPHY / raduate Studies Date S e p tem b er 2 5 , 1998 ............................ Chairperson Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. To Dad with love u Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. ACKNOWLEDGMENTS Deep heartfelt thanks to Julie Kiotas, and Gabrieia Koepal for their never ending friendship, encouragement and advice. In equal measure, thanks to my supportive, loving friend and husband, Michael. To my young daughters Emily and Lauren, their spirit and energy reminds me that determination, humor, and love gives one life. Eternal gratitude. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. TABLE OF CONTENTS ABSTRACT x CHAPTER I INTRODUCTION 1. The Need for Examining Women’s Health I 2. The Women’s Health Movement 3 3. Defining Women’s Health 7 4. Scope of Investigating Women’s Health 9 5. Framework for the Study of Women’s Health 15 6. A Biomedical vs. A Radical Feminist Plural Model of Health 20 7. Non-Govemmental Health Organizations Mobilizing for Change 26 8. Data Sources 34 9. Outline of the Study 35 CHAPTER II ELIMINATING HEALTH DISPARITIES FOR WOMEN 1. Overview 47 2. The Health o f Poor Women 6 L 3. Common Disparities 66 4. A Biomedical Model of Health 71 5. Social Models of Health 78 6. A Radical Feminist Plural Model of Health 82 7. Chapter Summary and Conclusions 83 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. CHAPTER IH DIVERSITY IN WOMEN’S HEALTH CARE 1. Measures of Health 89 2. Dynamics of Commonality and Difference 102 3. Health Issues, Concerns, and Actions of Women of Color 108 4. Older Women 127 5. Chapter Summary and Conclusions 134 CHAPTER IV GENDER VIOLENCE AND WOMEN’S HEALTH 1. Violence Against Women: A Public Health Problem 143 2. The Anti-Violence Movement 145 3. The Violence Against Women Act (VAW A) 147 4. Violence as a Public Issue 151 5. Considering Women o f Color and Violence 158 6. African American Women Experience Violence 163 7. Native American Women Experience Violence 169 8. Hispanic Women Experience Violence 173 9. Asian/Pacific Islander Women Experience Violence 180 10. Elder Abuse 18 5 11. Conclusion: Challenges for the Future 190 CHAPTER V HEALTH INSURANCE AND ACCESS TO HEALTH CARE 1. Insurance Coverage 204 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2. An Example of Health Access Inequity: Latinas 209 3. Public Programs 211 4. Women Who are Uninsured 215 5. Immigrant Women: Lost in Reform 223 6. Quality and Cost 226 7. Insurance Reform 229 8. Chapter Summary and Conclusions 230 CHAPTER VI WOMEN’S HEALTH CARE POLICY 1. Fighting for Their Health: African American Women 239 2. Fighting for Their Health: Native American Women 242 3. Fighting for Their Health: Hispanic Women 245 4. Fighting for Their Health: Asian/Pacific Islander Women 248 5. Fighting for Their Health: Older Women 250 6. Health Care in the Next Century for Women 252 7. Challenges: The Women’s Health Initiative 254 8. Moving Toward Pluralism: Recommendations 258 9. Conclusions 263 VI Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. LIST OF TABLES 2.1 Percentage of Women (Age L 8 and older) Living in Poverty, by Race/Ethnicity, 1990 Census 62 2.2 AIDS Cases and Annual Rates per 100,000 Population, by Race/ Ethnicity and Sex, Reported in 1997, United States 64 2.3 Age-Adjusted Mortality Rates for Selected Major Causes of Death for Women, by Race/ethnicity, United States, 1993 65 3.1 Health Status Measures by Race/Ethnicity and Family Incomes, Women aged 18-64 (weighted), 1995 94 3.2 Leading Causes of Death and Numbers of Deaths of Native American Women: United States, 1996 115 3.3 Asian/Pacific Islander Population 123 5.1 Insurance Coverage - Women and Men (ages 18 and over) 203 5.2 Percent Uninsured, 1992 216 LIST OF FIGURES 2.1 Fair or Poor Health Among Women 18 Years of Age and Over by Family Income, Race, and Hispanic Origin: United States, 1995 48 2.2 Reasons Women Give for Not Receiving Care in Past Year, 1996 62 2.3 No Physician Contact Within the Past Year Among Women 18-64 Years of Age with a Health Problem by Family [ncome, Race, and Hispanic Origin: United States, Average Annual 1994-95 63 2.4 Mammography Within the Past 2 Years Among Women 50 Years O f Age and Over by Family Income, Race, and Hispanic Origin: United States, Average Annual 1993-94 63 2.5 Estimated New Cancer Cases and Deaths for Women, Selected Cancers, 1998 67 2.6 Death rates for breast cancer among black and white women: United States, 1970-95 68 vii Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2.7 Receipt of mammography within the last year among women 50 years of age and over by age and health care coverage: United States, 1997 2.8 Fair or Poor Health Among Women 18 Years of Age and Over By Family Income, Race, and Hispanic Origin: United States, 1995 2.9 Death rates for heart disease by sex: United States, 1970-93 3.1 Activity Limitation Among Adults 18-64 Years of Age by Family Income, Race, and Hispanic Origin: United States, Average Annual, 1984-87, 1988-91, and 1992-95 3.2 Overweight Among Women 25-74 Years of Age by Education: United States, Average Annual 1971-74, 1976-80, and 1988-94 3.3 Overweight Among Women 20 Years of Age and Over by Family Income, Race, and Hispanic Origin: United States, Average Annual 1988-94 3.4 Hypertension Among Women 20 Years of Age and Over by Family Income, Race, and Hispanic Origin: United States, Average Annual 1988-94 3.5 Heavy Alcohol Use During the Past Month Among Women 25-49 Years of Age by Education, Race and Hispanic Origin 3.6 Cigarette Smoking Among Women 25 Years of Age and Over by Education, United States, 1974-95 3.7 Cigarette Smoking Among Women 18 Years of Age and Over by Family Income, Race, and Flispanic Origin: United States 1995 3 .8 Lack of Access of Needed Medical Care: Women Less Likely to Get Needed Care Than Men 3.9 Median Earnings of Year Round, Full-Time Workers by Sex And Race: 1979 and 1991 (1991 dollars) 3.10 Percent of African Americans Poor: United States, 1996 3.11 Median Household Income Among African Americans 25 Years Of Age and Over by Education and Sex: United States, 1996 3.12 Educational Attainment, American Indians and U.S. All Races, 1990 Census Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3.13 Employment Status by Sex, American Indians and U.S. A J1 Races, 1990 Census 113 3.14 Income Status in 1989, American Indians and U.S. All Races, 1990 Census 113 3.15 Poverty Rates for American Indians and U.S. All Races 114 3.16 Life Expectancy at Birth 115 3.17 Percent of U.S. Population Age 16 and Older Unemployed, by Origin: 1993 119 3.18 Percent of Poor Hispanics: United States, 1996 120 3.19 Educational Attainment for Asian and Pacific Islanders 124 3.20 Percent of Asian/Pacific Islander Women Poor United States, 1996 124 3.21 Number of women with disabilities increases with age 128 3.22 Heart Disease Death Rates Among Adults 65 Years of Age and Over by Family Income, All Races, Average Annual 1979-89 131 4.1 Violence and Health 144 4.2 Types of Elder Abuse 186 4.3 Reports of Elder Abuse 189 5.1 Uninsured Women Less Likely to Get Preventive Care 203 5 .2 Costs Affect Access for All Women: O f Women who did not Get Needed Care Those Who Explained: ‘I t Costs Too Much” 205 5.3 Number and Percentage of Persons Who Lost Employer Coverage by Class of Enrollee 206 5.4 Reasons for Loss of Employer Health Coverage (1989-1996) 206 5.5 Out-of-Pocket Expenses, 1996: Women Pay More Than Men Ages 15 to 44 Years Old 209 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. ABSTRACT When researching the topic of women’s health care policy in the United States, the intent was to document the extent to which gender bias had infected medical research and was compromising health and health care policy for women. Like many other Americans, I had been reading and hearing about the failure to include women in studies of heart disease. I had also heard of the under-funding of diseases, like breast cancer, that disproportionately affect women. Finally, E was aware of the drugs and medical bromides that were being dispensed to women although their safety and efficacy had only been tested on men. Clearly, doctors were practicing men’s health on women and, in some cases, putting women’s lives in danger. In the world of medicine, women were invisible. The more E researched the issue, the more elusive the answer became. E t was not difficult to document a pattern of unequal treatment in medical research and health care; scientists have been doing it themselves for many years. Long before women’s health became the stuff o f headlines, researchers, feminists and others, were rooting out and recording what looked frighteningly like an epidemic of neglect. No area of health care was untouched. Although I had been looking at gender bias, it became ever more apparent that other biases existed. I kept hoping to find an explanation of racial bias, class bias and age bias to reduce my growing discomfort with what I now believe to be the truth. Women of color, older women, and poor women are invisible in this culture within a culture of women, because their lives have not been important enough to notice. These women, as this analysis indicates, are inconsequential, a passing blur, and a presence that barely x Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. registers on the consciousness. Decisions on health care policy, what to research and how general funding should be granted have been based on what appears to be judgments of social worth. What are valuable in health are who are valuable to society, and that is white men and women. To correct this inequality, we must be willing to shake ourselves and those who hold our lives in their hands out of the comfortable stupor of the status quo. To be seen in this society, it is necessary that all voices be heard. Marginalized women have enormous unrealized power - as patients, as health care consumers and health care professionals. We need to encode a new message into the culture: There is no place in health care for any bias. One person’s voice cannot be more valuable than another’s voice. This critique proposes that the patriarchal organization and bio-medical model applied to health care policy needs to be eliminated. A radical pluralist model is a broader, more inclusive approach. This analysis is a first step o f documenting the inequalities and triumphs of diverse political and social experiences in health. All women must be valued. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. CHAPTER I INTRODUCTION This analysis examines the effects of current policies upon the delivery of health care to women in the United States, and looks particularly at the biomedical model used to create these policies. The study focuses, in part, upon specific groups of women whose access to the health care system is especially restricted by race/ethnicity and class. As the data presented in this research suggest, there is need to move away from a biomedical model of health that does not recognize human difference toward a model that is more inclusive and addresses more adequately the health issues facing diverse groups of women. 1 THE NEED FOR EXAMINING WOMEN;S HEALTH Health and medical care is an area of great importance to women in the United States for several reasons. First, women are the major users of health and medical services, seeking care for themselves even when essentially healthy. Most women, in fact, receive much of their routine care through birth control/family planning visits. Because women live longer than men do, they have more problems with chronic diseases and functional impairment, and thus require more home-based services as well.1 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. The 1997 average life expectancy at birth was 79.1 years for U.S. women and 73.1 years for U.S. men. This represents a near doubling in life span since the turn of the century, when average life expectancy at birth was 47 years in industrialized nations. At that time, the leading causes of mortality included infectious diseases, and for women, pregnancy and childbirth. Today, the leading causes of mortality for women, as for men, are the chronic conditions of heart disease, cancer, and stroke. These conditions account for 65 percent of American women’s deaths.2 Second, women are frequently the “health brokers” for the family, arranging care for children, spouses, or relatives; they are also major caregivers for those around them. Third, women represent the great majority o f health workers; 85 percent in the hospital setting and 75 percent overall. Also, 69 percent of all health care workers are people of color. However, only 20 percent of physicians are women — up from about 10 percent two decades ago3 — and women still have a relatively small role in policy setting in all arenas. This is especially true in medical schools, where women represent less than 10 percent of all tenured faculty.4 Fourth, in most medical institutions women have faced discrimination on the basis of sex, class, race, and age, and have experienced condescending, paternalistic, and culturally insensitive treatment.5 Certain groups of women (women of color, older women, and poor women in general) routinely confront discriminatory attitudes and practices and even outright abuse.6 Fifth, it is usually difficult for women to obtain good health and medical information, especially for non-conventional forms of treatment to ensure informed decision-making.7 This problem is intensified for low-income women and those who do 2 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. not speak English in part because their class, race, and culture are often markedly different from those of their health care provider. Sixth, women have been subjected to inappropriate medical interventions such as unnecessary cesarean sections (the rate of cesarean delivery declined slightly between 1995 and 1996- from 20.8 per 100 live births to 20.7- the Women’s Research and Education Institute estimates that a little under half of these were unnecessary8 ). Furthermore, African American women had a higher cesarean rate in 1996 (21.7) than either Caucasian women or Hispanic women. On the other hand in Los Angeles, California it was discovered that in public hospitals doctors forced poor women mostly Hispanic to attempt to deliver babies vaginally - even in high- risk cases — which resulted in injury and death.9 And finally, the health and medical care system has failed to recognize the importance of addressing the diversity of women’s needs. The most recent health data suggest that health needs o f women differ based upon their class, and race/ethnicity. The move toward generic health systems (HMOs) will not necessarily improve the health status of all women. 2 THE WOMEN’S HEALTH MOVEMENT In the late 1960s, women’s health movements (women of all ages and backgrounds in local communities) formed across the country to expose the multiple aspects of sexism in medicine that they believed permeated scientific and popular views of women’s bodies and women’s health. Inspired by the new analyses of feminism and 3 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. the insights gained through shared knowledge and shared experience, activists of the 1960s and 1970s set about questioning everything thought to be known about women’s health. The Boston Women’s Health Book Collective founded in 19691 0 , is an example of early activism that emphasized women taking control of their health. The Collective’s original goal was to illustrate to women the importance of talking to other women about their health. Avery states: The Boston Women’s Health Book Collective started health care reform in the seventies. Women spoke out about the lack o f health information given, the abuse of medical procedures and the unavailability of safe contraceptives. They said no to the disease approach to natural female processes such as birth and menopause and established the rationale for outpatient surgical procedures. Over the years, we have seen many o f the demands o f the women’s health movement incorporated into standard health care procedures. Since the U.S. sees itself as the best health care system in the world, we are justified in making sure it lives up to its reputation.1 1 Activists challenged the fundamental view o f biology as destiny refuted the depiction of women as mentally and physically fragile and raised questions about hazards to women’s health at home and in the paid labor force. They sought to demedicalize pregnancy, menopause, and other aspects of women’s reproductive lives. They promoted access to birth control and sex education; contested restrictions on abortion; denounced population control and sterilization abuse directed against women of colon and began to make international ties with women in other countries concerned about women’s health and women’s social status.1 2 Taking on issues of sexuality and power as related to women’s health, these activists vividly made clear the distinction between sex and gender, fought for more 4 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. liberated, less restricted views o f women’s sexuality, supported lesbian rights, and broke silence surrounding rape and domestic violence. Women’s health movements both criticized health and medical institutions and began to build alternative ones. Examining the health workforce, women’s health advocates noted that men dominated and controlled the health professions and took for granted women’s provision of health care at home. While seeking to change existing medical institutions and practices, activists established feminist health centers and abortion clinics, fought for the training and licensing o f midwives, encouraged women to enroll in medical schools, challenged the sexism of traditional medical curricula, and expanded women’s knowledge of their bodies through self-help groups. Embodying the spirit of this movement, Our Bodies. Ourselves quickly grew from a small, informal publication produced by a women’s health collective to become a worldwide best seller, read by millions of women in more than 12 languages.1 3 Reflecting a belief in fundamental unity among women, some active in the early women’s health movement wrote and spoke as though all women faced the same issues and had the same interests. From the start, however, activists were confronted by questions of race and class in relation to women’s health. Critical differences were most clearly articulated in the struggles around women’s reproductive rights. Many women of color felt that women’s health movement activists were insufficiently sensitive to issues of sterilization abuse and to the need for financial - not simply legal- access to abortion. The unsuccessful fight in 1977 against the Hyde amendment, which forbade the use of 5 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Medicaid funds for abortion, illustrated how conservative forces could successfully restrict reproductive rights. The Hyde amendment was to set the stage for the battles of the 1980s. With the election of Ronald Reagan, women’s health movements were transformed from hopeful, expansive movements into a beleaguered set of organizations trying to defend women’s basic reproductive rights. Working on a state-by-state basis, conservatives attempted to whittle away the right to abortion by imposing a succession of restrictions such as waiting periods and parental consent; anti-abortionists blockaded and firebombed abortion clinics and were able to prevent the import of RU-486, the " ‘morning after” pill. In the 1980s, the AIDS epidemic provided another target for groups such as the Moral Majority in their efforts to reverse the liberalizing trends of the 1970s.1 4 As traditional conservatives and the New Right were mounting their assaults against the feminist and other progressive movements, more and more women were entering the health professions, enrolling in medical schools, and training for research careers. They were also rising to positions of influence in federal and state agencies, and running for - and increasingly winning - political office. New organizations - such as the National Black Women’s Health Project and the National Latina Health Organization - began to advance more inclusive women’s health agendas. Other activists built on the experience of successful grassroots organizing around AIDS and began to address the specific issues of women and AIDS, women and breast cancer, breast implants, and treatment for menopause. In the 1990s, there is a resurgence of interest in women’s health as the result of the intersection of two trends in women’s health movements. One is the growing impact 6 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. of women as health professionals, as elected politicians, and as policymakers. The other is the continuing tradition of feminist grassroots organizing around women’s health. The influence of these two trends can be seen in the recent creation of the Office of Research on Women’s Health, established in September 1990, in the National Institutes of Health. The mandate of this office is to identify the gaps in knowledge about women’s health, formulate a comprehensive research agenda for women’s health, and ensure that women are included in clinical studies.1 5 Its formation would not have been feasible without leadership from congresswomen and influential women researchers and physicians in the biomedical establishment on the one hand, and from feminist activists and organizations on the other. This office simultaneously represents a major accomplishment and an arena of contest. Women’s health issues cannot effectively be addressed by following the usual practices of biomedical research and health policy that are now applied equally to female bodies. In addition, the questions and methods of health research must be changed if the health of all women is to be understood and improved across the social divisions of race/ethnicity and class. 3 DEFINING WOMEN’S HEALTH Women’s health is more than the absence of disease. The definition incorporates the social and behavioral aspects of women’s health. In taking this approach, the importance of understanding the complexities and differences in women’s health and life 7 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. situations is underscored, not just the shared characteristics of female organ systems. The attempt is to go beyond illnesses and diseases common or particularly important to women. Early feminist efforts to teach women how their bodies work and how women’s bodies are subject to social control in health and healing systems are important in their own right, however, many other aspects of women’s health deserve attention. Understanding the diversity of women’s health needs, and the complexities of meeting those needs, must be addressed in the social contexts of women’s lives. Chesney and Ozer suggest that: Integrated models o f women’s health address the contributions of socially and culturally constructed concepts of caring and curing as well as health practices, medical care, and social investments in the prerequisites of health. These conceptualizations of health differ radically from narrow biomedical models that only acknowledge prevention, detection, and treatment of disease.1 6 The first step in constructing a new model o f women’s health is recognizing how research and public policy have been predominantly biomedical — focusing on a limited range of diseases and conditions taken out of the context of women’s daily lives. From a biomedical perspective, health is the absence of disease and infirmity. In contrast, the World Health Organization (WHO) has defined health broadly, within a social rather than biomedical frame, for nearly half a century. For WHO, health is a “state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.” 1' This broad social model of health has not been used often in the United States to shape research and policy. 8 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. The breath and depth of work on women’s health that researchers, clinicians, and health advocacy groups have produced over the past three decades have laid the groundwork for adopted and expanding the WHO’s definition o f what actually produces health, not only for women but for families and communities. Although this analysis critiques the biomedical model that dominates thinking about health in the United States, the intention is not to discount or leave unacknowledged the very real contributions of many individuals who have worked to change biomedicine to better meet women’s needs. What this study does suggest is that dominant biomedical conceptualizations of health, with their narrow disease-focus, inadequately represents health because it leaves out, or nominally considers, the social forces and contexts that shape women’s health and women’s lives. If women’s health is conceptualized as embedded in communities, not just in women’s individual bodies, a foundation is laid for envisioning a different model of women’s health. Attention to the broader base of what actually produces health suggests that social investments in a variety of areas are necessary to promote women’s health. As this study looks at the variations in women’s health statuses and experiences, the need for doing so becomes clear. 4 SCOPE OF INVESTIGATING WOMEN’S HEALTH This analysis provides descriptive information not only on women in general, but on specific racial/ethnic differences in women’s social conditions, health status, and use 9 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. of health services as well. The categories used are those defined by the Institutes of Health. Examined are the indices of the quality of life — using a framework that considers life experiences associated with being female, a racial/ethnic minority, and a member of a particular class. This assessment addresses some of the limitations of public health policies that treat all women the same. Long after the courts determined in International Union v. Johnson Controls, Inc.1 8 that it was an impermissible basis for making laws in this country, gender stereotyping has persisted in the health care arena. When women need health care, they enter a system in which institutional biases restrict their access in many different ways. Some of the most blatant biases are: 1) Women are excluded from important clinical trials because of the threat of potential litigation because of their reproductive capacity, thereby precluding the development of safe treatments for them; 2) The medical establishment has not adequately taken up research about certain diseases (ovarian cancer) that are more common to women than men; and 3) Many programs and services, such as those for cardiac treatments still do not address the needs of women.1 9 Bias persists in less obvious ways as well. For instance, the medical and social implications of important differences among women remain largely ignored. We know little, for example, about the significance of race on the progression of AIDS in African American women, who, as of 1997, according to the Centers for Disease Control and Prevention, HIV/AIDS Surveillance Report, comprised 58 percent of women diagnosed with AIDS in the U.S.2 0 These issues will be discussed throughout this analysis in order to address reform measures that are essential to generating improvements in the delivery of health care in 10 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. this country. Information from various disciplines is presented, demonstrating the close interaction between the legal system, the research and development industry, Congress, academia, and health care professionals, and the necessity for interdisciplinary efforts at reform. The following hypotheses are tested to determine whether a new model must be used to create more effective health care policy in the United States for women: 1) A biomedical model of health encourages gender stereotyping as well as race/ethnic stereotyping which significantly affects the formation and implementation of public health policy. If the goal of policymakers is to create healthy, productive communities in the United States than the improvement of health care requires broader definitions o f what constitutes health. 2) If policymakers can eliminate sex, race, and class bias in research, health will improve. 3) Finally, if policymakers expand access to primary care for all women and girls; and work to eradicate the conditions that lead to ill-health such as poverty which is at the root of most health problems, than the health of all people in the U.S. will improve. This work offers an original interdisciplinary approach to a complex array o f problems that are too often oversimplified by fragmented institutional structures ill-equipped to devise short- and long- term policy solutions. The first step in addressing the above is to recognize that the categories policymakers and health professionals treat as simply biological are in fact largely social. The second step is to realize the need for social concepts to understand these social categories. The third step is to develop social measures and appropriate strategies for a new kind of health policy.2 1 With regard to race/ethnicity, “race” is a spurious biological concept.2 2 Historical patterns of geographic isolation and migration account for many differences in 11 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. the distribution of certain genes. However, genetic variation within so-called racial groups far exceeds that across groups. All humans share approximately 95 percent of their genetic makeup.2 3 Racial/ethnic differences in disease thus require something other than a genetic explanation. Recognizing this problem, many in the health profession have tried to substitute the term “ethnicity” for “race”.2 4 In the public health literature, however, “ethnicity” is rarely defined. For some, it apparently serves as a polite way of referring to what are still conceptualized as “raciaP’ /biological differences. For others, it expresses a new form of “cultural” determinism, in which ethnic difference in ways o f living are seen as autonomous “givens” unrelated to the social status of particular ethnic groups within our society. ' This cultural determinism makes discrimination invisible and can feed into explanations of health status as reductionist and individualistic as those of biological determinism. For a different starting point, consider the diverse ways in which racism operates, at both an institutional and interpersonal level.2 6 Racism is a matter of economics, and it is also more than economics. It structures living and working conditions, affects daily interactions, and takes its toll on people’s dignity and pride. All of this must be considered when examining the connection between race/ethnicity and health. To address the economic aspects of racism, economic data need to be included in all studies of health status.2 7 For the first time the National Center for Health Statistics in its annual Health. United States. 19982 8 considers the link between socioeconomic status and health. Past reports did not include economic information — instead, racial differences were used as indicators of economic differences. To the extent that 12 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. economics are taken into account, the standard approach assumes the differences are either economic or “genetic”. So, for those conditions where racial/ethnic differences persist even within economic strata - preterm delivery, for example - the assumption is that something biological, something genetic is at play. Researchers rarely consider the non-economic aspects of racism or the ways in which racism continues to work within economic levels. Some investigators, however, are beginning to consider how racism shapes people’s environment. Several studies, for example, document the fact that toxic dumps are most likely to be located in poor neighborhoods and are disproportionately located in poor neighborhoods of color 2 9 Other researchers are starting to ask how people’s experience of and response to discrimination may influence their health.3 0 A recent study of hypertension, for example, found that African American women who responded actively to unfair treatment were less likely to report high blood pressure than who internalized their response were.3 1 Interestingly, the African American women at highest risk were those who reported no experiences of racial discrimination. Countering the traditional practice of always taking whites as the standard of comparison, some researchers are beginning to focus on other racial/ethnic groups to better understand why, within each of the groups, some are at higher risk than others for particular disease outcomes.3 2 They are considering whether people o f color may be exposed to specific conditions that whites are not. In addition to living and working conditions, these include cultural practices that may be positive as well as negative in their effects on health. These new approaches break with monolithic assumptions about 13 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. what it means to belong to a given racial/ethnic group and consider diversity within each group. It is equally true that to know a person’s sex is to know very little. Women are often discussed as a single group defined chiefly by biological sex, members of an abstract, universal (and implicitly white) category. In reality, women are a mixed lot, their gender roles and options shaped by history, culture, and deep divisions across class and color lines. O f course, it is true that women, in general, have the capacity to become pregnant, at least at some stages of their lives. Traditionally, women as a group are defined by this reproductive potential. Usually ignored are the many ways that gender as a social reality gets into the body and transforms its biology. From a health point of view, women’s reproductive potential does carry the possibility of specific reproductive ills ranging from infertility to pre-term delivery to cervical and breast cancer. These reproductive ills are not simply associated with the biological category “Female,” but are differentially experienced according to social class and race/ethnicity. Poor women, for example, are much more likely to suffer from cervical cancer.3 3 By contrast, at least among Older Women, breast cancer is more common among the affluent.3 4 These patterns illustrate the general point that, even in the case of reproductive health, more than biological sex is at issue. Explanations of women’s reproductive health that ignore the social patterning of disease and focus only on endogenous factors are thus inadequate. Examining those conditions that affect both men and women - the majority of all diseases and health problems - two factors come into play. First are the differences and similarities among diverse groups of women; second are the differences and similarities 14 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. between women and men. The issues of women’s health cannot be understood only in biological terms, as simply the ills of the female of the species. Women and men are different, but they are also similar -both are divided by class and race/ethnicity. To begin to understand how one’s social constitution affects one’s health, we must ask, repeatedly, what is different and what is similar across the social divides of gender, color, and class. Biology alone will not provide the answers. Instead, solutions will only be found by re fraining the issue in the context of the social shaping of human lives — as both biological creatures and historical actors. Otherwise, policymakers and others will continue to mistake - as many before us have done - what is for what must be, and leave unchallenged the social forces that continue to create vast inequalities in health in the United States. 5 FRAMEWORK FOR THE STUDY OF WOMEN’S HEALTH Previous research provides a framework for examining women’s health - especially that of underrepresented groups.3 5 Zambrana3 6 offers a thoughtful and poignant critique of the research on the health of minority women, noting that even authors sensitive to women’s issues have failed to address social class and racial/ethnic differences among women. She proposes a conceptual model for studying the health of minority women that considers health status as an interactive relationship among socioeconomic, behavioral, and environmental factors. Focusing on reproductive health issues, Zambrana applies this conceptual model while illustrating the limitations of 15 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. existing research. Asserting that adolescent sexuality and childbearing are influenced by sociocultural background and socio-economic status, Zambrana also sees their consequences for the mother’s education and employment opportunities and the child’s health. In reviewing data on pregnancy outcomes, she notes that Mexican American women have high childbirth mortality rates and African American women have high rates of low birthweight infants. Zambrana advances the premise that poorer outcomes are due to social class and differences in the use of prenatal care. Hooks3 7 has examined women’s health from a perspective that acknowledges the impact of social class on health, hooks explores the premise that life stressors associated with poverty are risk factors for emotional distress and even mental illness. The relation between social class and mental health has been well documented38; research however, is limited regarding the combined impact that race, gender, and social class has on mental health.3 9 hooks asserts that social strata are not necessarily comparable across racial/ethnic groups because who is considered poor is relative, depending on the wealth among one’s peers. Using clinical case studies, she describes some of the economic circumstances of African American single women that potentially exacerbate life stressors associated with loneliness or parenting. Ruzek4 0 examines the impact of race and social class on breast cancer survival in a population-based sample. After adjusting for social class, in addition to age and other medical predictors o f survival, the author found that black-white differences in breast cancer survival rates diminished greatly. The results provide strong evidence that racial differences in today’s breast cancer survival rates are largely attributable to the poorer social class standing of African American women. 16 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Reviewing the literature, most reports addressing the health status of racial/ethnic minority population groups did not provide data by gender and race or were limited in the ethnic groups included.4 1 Also, research involving the health of women in general, and of minority women in particular, is limited4 2 , and few studies have explored the effects of race and social class on health.4 3 The Secretary’s Task Force on Black and Minority Health in 1985 was a first attempt at providing a national perspective on the health of racial/ethnic minority groups. In many cases, data were disaggregated by gender. However, information on the health of Hispanics was not included in this report due to the lack of data specifically identifying ethnic origin. Since 1960, U.S. racial/ethnic minority population groups have experienced considerable gains in health status.4 4 The magnitude of racial disparities, however, has changed little in the last two decades. In some cases, the gap has widened. Mortality statistics, one of the most dramatic and reliable indicators of a population’s health, are evidence of continuing racial disparities. The Department of Health and Human Services, Secretary’s Task Force on Black and Minority Health contributed significantly to my understanding of the differences in mortality between African Americans and white Americans. As an indicator of the severity of racial disparities in health, the Task Force computed the number of “excess deaths” that occur among racial/ethnic minority women and men. Excess deaths reflect the number of deaths that would not have occurred if racial/ethnic minority populations experienced the same death rates, by age and sex, as whites. The measure reflects a standard of health that presumably could be achieved given the current state of knowledge and use of comparable resources. 17 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. In addition to literature specific to women’s health, many feminist authors contributed to the theoretical context of this study. Eisenstein argues that a central concern of feminist theory is how to ameliorate the tension between equality and difference.4 5 “Sex equality” is an elusive phrase. Depending on context, it can be vitally significant or virtually meaningless. According to patriarchal standards, women are categorized according to both difference and sameness - indicating that they are either completely determined by their biological sex or entirely free of it. Throughout history, women themselves have succumbed to the patriarchal structure, categorizing each other according to class and race, creating the current situation where, as a group, they are left fragmented, without access and power.4 6 Eisenstein’s idea of pluralism can be applied to women’s access to health care in the United States. She states: ...the concept of equality is best reconstructed through a completely pluralized notion of difference(s), one that rejects a politics of inequality and demands radical egalitarianism. This radical pluralist view recognizes inequality in the hierarchical dispersion of power; the state is both pluralist and unified in its activity and its structuring of power. Power is both a totality and a series of specificitys - universal and specific, homogeneous and heterogeneous, stable and unstable, centered and decentered, concentrated and dispersed.4 7 The current struggle for health care in this country is based upon this hierarchy and unequal distribution of power. Politicians, health professionals, and others have constructed current debate by using a biomedical model (discussed in Chapter Two) which has grown over time from within the patriarchal capitalistic system. General overall acceptance o f this model is a prime example of how women themselves have 18 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. given in to the patriarchs in power. Practicalities have forced them to accept what is offered or take nothing at all. Petchesky argues that patriarchy is the process of differentiating women from men while privileging men.4 8 What it also does is differentiate women from women - either you are part of the group or you are left in the margins.4 9 Petchesky notes this is not a new phenomenon in American history. The “so-called” radicals of the reproductive movement eventually gave in to the dominant culture. The perplexity of a health movement, according to Petchesky, is that whatever is offered is desperately needed even though it is not enough and, in the long run, may have a devastating effect on of women.5 0 Petchesky describes how the birth control activist Margaret Sanger could be considered a radical socialist early in her life. Sanger argued that a woman had the categorical right to “own and control her body”. When trying to convince the government Stinger later changed her clearly articulated views. For example, she testified that there was “lawful rape” in marriage but women needed to have birth control information in order to prevent pregnancy when this occurs. Even later in the 1920s/193 Os, her focus was to win acceptance of birth control and establish its legality. This single-mindedness made for serious contradictions in her ideology and her politics.5 1 This contradiction is most evident when Sanger seeks the endorsement of “influential doctors”. This led to her persistent opposition to abortion. ‘In its quest for legitimacy, the birth control movement, under Sanger’s leadership, turned increasingly to the medical profession and the elite professionals who espoused eugenics.”5 2 The cost to the radicals was immense. First, there is continued suppression abortion. Second, there 19 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. is the indelible linking of birth control as public policy with racist, class-biased assumptions about who should reproduce and who should not reproduce. This leaves the radicals powerless. Foucault argues sex “difference” becomes the engendered differentiation o f sex. One is no longer in the realm of nature but somewhere between culture and nature. The term “patriarchy” connotes the social, historical, and economic relations of power in society that create and reflect gender inequality.5 3 Women’s health, especially, is not in totality a biological question: it is a political issue involving social relations. According to Everett Mendelsohn: Science is a cultural institution. It is an activity of human beings acting and interacting, thus a social activity. Its knowledge, its statements, its techniques, have been created by human beings and developed, nurtured and shared among groups of human beings. Scientific knowledge is therefore fundamentally social knowledge. As a social activity, science is clearly a product of a history and of processes, which occurred in time and place and involved human actors.5 4 6 A BIOMEDICAL MODEL VS. A RADICAL FEMINIST PLURAL MODEL OF HEALTH In current public discourse regarding health care, the American public has been “socialized” by the dominant structure to treat scientific information as fact. For women, this has had a devastating effect on their ability to maneuver through the system. Throughout the 1970s, 1980s and to a great degree the 1990s, the focal point of political 20 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. discourse regarding health and health care policy for women has been on narrow issues, i.e. abortion and access to information regarding motherhood. This discussion virtually excludes the wide array of health concerns for diverse communities of women. For example in the 1970s: Whereas many white, middle-class women spoke of their individual rights to safe and legal abortions, natural childbirth, and information from their physicians, women of color spoke of their community’s concerns: coercion in sterilization and family planning and their need for jobs, education, and dignity.5 5 This great divide in focus has basically disunited women. This disunity has caused different groups of women to create separate organizations and advocacy groups among themselves in order to address specific health issues. However, on the federal level, if one were to examine current debate/discussion, one would find political leaders still treating women as one group with common health concerns.5 6 These common concerns tend to be those of middle-upper class white women, which trivializes the urgent concerns of poor women — women o f color, older women. As this study will indicate women of color, and older women - usually poor - are not as concerned, for example, about a woman’s right to an abortion. The diverse concerns of women are particularly relevant and timely as policymakers debate and in some states enact reductions in public support that is sure to worsen the lives of countless women and children who are the least powerful in our society. Clearly, without social and economic policies to reduce inequities for all marginated groups, the gap in health status among diverse groups of women will continue to grow. 21 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Elevating the health status of women is of central concern to policymakers who in the long run focus on the cost effectiveness of creating healthy communities. As the Office of Women's Health mission statement argues: the success of achieving healthy communities hinges upon political leaders at the federal, state and local levels broadening definitions of health - moving away from dialogue solely stemming from the medical and medically related communities.5 7 The central question is how can change occur that creates greater health for all society? The first step is to re-evaluate the current model used to discuss health care. The biomedical model applied to women’s health has been successful in many areas, especially when viewing the progress made in reproductive health areas: for example, abortion, childbirth, birth control. Yet there are multiple areas of women’s health where progress is not so evident, especially when considering the many health needs of diverse groups of women. The discourse that biomedical models has created may, in fact, as this study argues, have had an overall negative effect on underrepresented groups of women.5 8 This analysis examines women’s health in a new way. The argument presented is that a radical feminist model, plural in its vision, will improve the health of all communities of women. This model realizes that reproduction is a key part of women’s health, but it is only part of the picture. In order to create a healthy community, this model constructs a framework where policymakers take into account the woman as a whole, recognizing the different needs of different individuals. Recognizing difference does not mean one has to sacrifice progress that has been made in women’s health. Yet, treating women as a class based upon gender must not 22 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. negate or undermine difference, for example, we cannot ignore color, or economic status. Upon close examination, as this study shows, most health policies, in fact, completely ignore the diverse health concerns of diverse groups of women. Part of the dilemma is the issue of women creating policy in the first place. The discussions, debates and outcomes are shaped by the dominant culture. History shows that the white, Protestant, patriarchs have centered health policies around “her (a woman’s) maternal” nature. In 1997, as in the earlier history of the nation, the notion of women being defined principally through their reproductive capacity remains a driving force in health care research and public policy as well. Much of the reason the state plays such a role is because women throughout the years have rightly demanded public policy to “protect” their rights. The federal government, in many cases, has formulated policy in what it perceives its best interests rather than women’s. For example in 1916, feminist activist Emma Goldman unintentionally gave the government ample ammunition by calling for a public policy regarding contraceptives. The government takes this call and uses it to experiment with contraceptive devices in the name not of women’s health but under the rubric of population control. Population control was seen by many businesses in the private sector as a way to make substantial profits especially abroad. Major pharmaceutical companies as well as every major international population control institution funded early experimentation of the birth control pill on women in developing countries.5 9 In the 1990s there is still a preoccupation with the uterus. The health care initiative put forth by President Clinton in 1992 focused on women and children as part of a patriarchal family structure. Once again in 1997, the nuclear family was the primary 23 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. focus o f physicians, scientists and other health care physicians who testified before a congressional health care sub-committee.6 0 The bio-model framework these individuals represented completely ignored the complex, diverse needs of women. For example, most women of color want access to jobs, education, and childcare in order to create better health. Immigrant women’s advocates continue to lobby for their group member’s health safety, especially the right to be protected from involuntary sterilization. Older women’s advocates seek to improve access to medical care for their constituents as well as inclusion in biomedical research. A radical pluralist feminist theory model applied to women’s health would recognize the specificity of the female body and the variety of ways this is expressed: individually (as in differences of health, age, body strength, and size) and in terms of a woman’s race and class. Currently, the biomedical model as applied to women’s health is not only hierarchical but narrow in focus as well. There is much more to creating health than finding a specific cure for a specific ailment. In addition, the biomedical model o f health treats men and women, as well as women and women the same. A radical plural feminist model would recognize difference. This can be a risky proposition. Neo-conservatives, as seen throughout the 1980s and the 1990s, can use the idea of difference to their benefit. A primary example is the dismantling of welfare policy and Affirmative Action policies. The conservative argument portrays these two policies as detrimental their recipients because the programs treat them as different. There is however a nascent grassroots backlash against the current conservative agenda. The marginalized are organizing or beginning to organize.6 1 In California since the controversial ballot measures 187 and 209, for example, there has 24 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. been a 30% increase in voter registration in the Hispanic communities of central Los Angeles since 1994 - a rate six times higher than the county-wide increase. According to the Los Angeles Times: “ ...organizers are giving voice to a new civic consciousness that combines Latin American traditions of collective action with Jeffersonian ideas about participatory democracy — opening a window on what the political life of Southern California may feel like in the next century.”6 2 A radical pluralist model considers race, class and environment. The new model is muIti-dimensionaL one that considers individual health in creating healthy communities. The simple medical definition of health is abandoned for a complex definition o f health that includes not only the immediate body and mind but also the outside contributors to the functioning of that body. The first step in broadening definitions is to examine current health issues of women from various communities and then to pose health questions as framed by these women. This model primarily addresses health needs of women but can be easily applicable to all health care policies in the United States. One example of a successful plural approach that has worked effectively at the grassroots community level is the Santa Cruz Women’s Health Center.6 3 In 1982 the Center launched its Bilingual Outreach, a mobile health unit equipped with medical and educational supplies, health information, and counselors. The mobile health unit serves as a link between Hispanic women and the bilingual health services offered at the health center. A multiracial group of women designed and developed this project for the health center. This project has, from its beginning, been a project for Hispanic women, 25 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. designed by Hispanic women and initiated by a multicultural group of women. The goal of the program is to bring basic information about women’s health care to Latino and low-income communities, to give women the information they need to have/take more control over their lives and the lives of their children and families. The project began by going to the four designated areas in North Santa Cruz County as a team, literally knocking on every door and talking to women about a dream to bring a mobile health unit to the community. Counselors met with women once a week. The mobile health unit contains a mini-lab and a library and serves as a resource center with health information and community referrals. The mobile unit provides health education classes and counseling in nutrition, high blood pressure, anemia, pregnancy counseling, prenatal care, birth control and abortion counseling.6 4 The mobile health unit ultimately provided a catalyst for the historic and present-day ethnic and cultural diversification of the staff, clients and board of the Santa Cruz Women’s Health Center. The work of the mobile van also culminated in the formation of Familia Center, a community center run by and for Latinos in the barrio of Santa Cruz; once a project of the SCWHC, the Familia Center is now a successful, community-organized independent project. 7 NON-GOVERNMENTAL HEALTH ORGANIZATIONS MOBILIZING FOR CHANGE Different priorities for advocacy, legislative efforts, clinical services, public policies, and research come through the collective voices of women. Different groups make efforts to clearly and directly represent the needs of their constituencies. Selected 26 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. national organizations are used in this study as examples of how non-governmental organizations (NGO) have affected governmental health policies. Their efforts to voice health concerns, priorities, and agendas, described briefly here and elaborated throughout the analysis, make clear why moving toward a broader model of women’s health is an essential task for the future. National Women’s Health Network. Nationally, the women’s health movement found a unified voice with the establishment of the Washington, D.C. - based National Women’s Health Network in 1975. The Network is this country’s only national membership organization devoted exclusively to the health of all women. It influences health policy at the local and national level. The Network’s membership has grown to over 13,000, and it includes several hundred organizations that represent a constituency of half a million people. Today the annual budget is $550,000, with five staff members at its national headquarters in Washington, DC, and dozens of interns and volunteers. The members of the network’s board of directors come from different geographical areas, diverse racial and ethnic backgrounds and span forty years in age. The 1998 agenda for the Network includes such issues as bettering women’s reproductive health, general access to health care, lobbying for more money to research breast cancer, women and HIV/AIDS, menopause, and hormone treatments. The Network also maintains a Women’s Health Information Clearinghouse. The Network has a powerful and credible presence among members of Congress, and other important policymakers.6 5 Among other accomplishments over the past two decades, the Network has Testified at numerous U.S. Senate and House hearings on unsafe birth control pills and devices, drug reform 27 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. laws, contraceptive research priorities, nurse-midwifery practice, treatment for DES daughters, and unsafe hospital childbirth practices. Won, with other groups, a precedent-setting lawsuit requiring drug companies to publish patient package information on the risks of menopausal estrogen drugs. Testified at U.S. Department of Health, Education and Welfare hearings on sterilization abuse and recommended safeguards to ensure informed consent and bilingual patient information. Organized the first major rural women’s health conference in Appalachia in June 1981. Successfully pressured the federal government to spend SI.5 million to study the effectiveness of the cervical cap and make it available to women nationwide. Filed a worldwide class-action lawsuit against the A.H. Robins company on behalf of all women damaged or potentially damaged by the Daikon Shield IUD. Persuaded the FDA to streamline its approval process for women’s condoms and other barrier contraceptives. Produced the first educational brochure about AIDS prevention that highlighted the risks facing women. Mounted a multiyear campaign to persuade the government to undertake large, long-term studies of the health of older women and possible prevention of breast cancer, which finally resulted in the Women’s Health Initiative and WomenCARE.6 6 National Black Women’s Health Project. The National Black Women’s Health Project (NBWHP), founded in 1981, is known internationally as a grassroots health advocacy organization. NBWP was founded on the premise that African American women needed to address how negative socio-economic factors aggravate their health problems by causing extreme stresses. Run by African American women, the NBWHP is 28 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. to committed to improving the health status of African American women through self- help and empowerment. Today the NBWHP has 96 self-help groups in 22 states for African American women. In 1996, NBWHP moved its National headquarters to Washington, D.C. to bring the organization to the center of the public policy arena while maintaining its community base.6 7 NBWHP believes that poverty, racism, fragmented health and social delivery systems, overwhelmed educational systems, drug abuse and misuse, as well as crime, cripple the communities in which African Americans live. It is within the context of these realities that the mission of the NBWHP is: To define, promote, and maintain the physical, spiritual, mentaL and emotional well being of Black women. We seek to enable Black women to become aware of the nature of physical and mental health and the relationship between the two, and to enable Black women to take control and become active participants in our health maintenance. It is through a broadened concept of health and active programs to promote healthy lifestyles that Black women can live, love and work in new and more authentic ways.6 8 NBWHP works At the primary prevention level, with individuals and groups. At the community action level, where groups influence local health policies. At the national policy level, where the perspectives of African American women influence policymakers and the public. At the international level, where self-help tools are offered to women in developing nations.6 9 Self-help group development is the primary focus of NBWHP. Self-help programs are the outreach vehicles through which most o f the organizing, leadership 29 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. development, and advocacy is conducted. NBWHP works in partnership with seven historically black colleges and universities to establish drug abuse prevention self-help groups. The Public Policy and Education Program researches, analyzes, and promotes public policies that will improve the health status of African American women. The group addresses a range of health access and equity issues as well as health conditions specific to African American.7 0 Native American Women’s Health Education Resource C enter. In 1985, a group of Native Americans living on or near Yankton Sioux Reservation in South Dakota formed the Native American Community board (NACB) to address pertinent issues one being health. The first NACB project developed was “Women and Children in Alcohol,” a fetal alcohol syndrome program. This program defined subsequent health work. In February 1988, the NACB opened the Native American Women’s Education Resource Center (NAWHERC), the first resource center located on a reservation in the United States. In October of 1991, after a long legal battle, the Domestic Violence Program of the NAWHERC opened the first native shelter for battered women a few blocks away from the Resource Center. Since 1991, the Center has expanded to include many programs concerning issues oft Domestic Violence, AIDS prevention, and Breast Cancer prevention. The NAWHERC has a Clearinghouse of educational material on Native women; scholarship programs for native women, Reproductive health and Rights advocacy groups, and community sponsored health fairs. In 1997, the NAWHERC 30 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. opened an office Washington, D.C. as Native women seek to be included in national health care debates.'1 National Latina Health Organization. At a conference on International Women’s Day in 1986, a group of Latinas from across the country came to the conclusion that good health care for Latino women demanded a new approach, Latinas helping Latinas. As a result, they formed the National Latina Health Organization (NLHO). The goal of the organization is to play an active role in improving the health and well-being both physical and mental of Latinas. NLHO advocates and supports the right of Latinas to reproductive choice, which encompasses access to quality health care and information that enables them to have healthy babies. NLHO promotes self-help methods and self-empowerment as a way to improve health. NLHO lobbies the government (state and federal) for bilingual access to quality health care. The main goal of the 1998 agenda is education, outreach and research inclusive of Latinas. In 1997, a branch of NLHO, formed the National Latina Institute for reproductive Health (NLIRH) based in New York. This organization works to enhance the quality of life for Latinas nationwide, especially their reproductive health, through advocacy, networking, information, and education and by impacting public policy. NLIRH promotes and defends access to appropriate, comprehensive health information and services for Latinas.7 2 National Asian Women’s Health Organization. The National Asian Women’s Health Organization (NAWHO) was founded in 1993. NAWHO is recognized for its expertise as a leading health organization. NAWHO’s mission is “to improve the health status of Asian women through research, education, leadership and public policy 31 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. programs that empower women, and address broader social justice issues for under served communities of the entire American population.” NAWHO has a general membership of over 3,000 individuals and 150 organizations from 24 states.7 3 The NAWHO 1998 agenda includes: Representing Asian American women and families in the expansion of safe and adequate health choices and options, the insurance of quality and comprehensive health care delivery. - Developing appropriate analyses, strategies, and recommendations for shaping ethical public policy, working with lawmakers and government agencies in order to improve the quality of life for Asian American women and their families. Closing the major gaps in baseline health information, including gender and ethnic specific documentation, and address the need for reliable and timely data for policies and programs on Asian American women’s health. Challenging and changing public attitudes and behaviors detrimental to the health of Asian American women and girls. Empowering Asian American women ad girls, establishing them as leaders in health education, policy development, and advocacy movements., A The NAWHO: - Organized the first national Asian women’s health conference in 1995 (now an annual event), Created the South Asian Women’s Health Project to provide policy recommendations to local governments across the country regarding South Asian Women’s access to health care, and - Designed an 18-month project focussing on increasing knowledge and awareness o f reproductive health issues among low-income, recent immigrant and refugee Vietnamese women.7 5 National Older Women’s League. The National Older Women’s League (OWL), founded in 1980, is the first and only national grassroots membership organization whose sole mission is to address special concerns and needs of women as they age. OWL works 32 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. to provide support for over 20,000 members to achieve economic and social equity for its constituents and to improve the status o f mid-life and older women.7 6 OWL’s programs and activities spring from one encompassing vision: mature women in control of their lives, managing their health with independence. The 1998 agenda is concerned with lobbying congress to approve the “Managed Care Bill of Rights,” and “a Medicare Commission.” Long-term goals are: Comprehensive, preventative, acute and long-term care accessible to all, which recognizes specifics of women’s health care profiles. Equitable Social Security and Social Security Income systems adequately reflecting women’s work and life patterns. Safe and affordable housing, a primary requisite for health later life. Educate policymakers Promote caregiver legislation Access, portability, and equity o f health care coverage. OWL: Opposes integration o f private pension benefits with Social Security benefits. - Organizes conferences and programs that provide interaction between its members and decision makers in government. Initiated the Campaign for Women’s Health and is the co-founder of the Women’s Pension Policy Consortium. Established Powerline, an automated telephone service that summarizes congressional actions, Supreme Court rulings, governmental agency reports and selected press conferences that affect older women. Sponsors national public information programs, the Mothers Day campaign, which annually examines the status of mid-life and older women in America.7 7 33 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 5 DATA SOURCES Data on health indices of women are presented from a number of sources. These include data on specific groups of women taken from: Health. United States. 1998 with Socioeconomic Status and Health Chartbook. the 1990 U.S. Census and Health Interview Surveys from 1990-1997 (sponsored annually by the Institutes of Health). General data gathered by the Institutes of Health, the Office of Women’s Health, the Office of Minority Health, the 1993 Commonwealth Fund Survey on Women’s Health, and the Kaiser Family Foundation 1990-1997 annual survey on Women’s Health is used as well. Original data on women aged 18-64 from the 1997 Health Interview Survey is analyzed. When possible, data on mutually exclusive racial/ethnic categories is presented.'8 In official statistics, Native American women include America Indians and Alaskan Natives (Eskimos and Aleuts), but many women self identify by specific tribe. The term Hispanic refers to Spanish-sumamed or Spanish-speaking residents of the United States and is used in most health statistics. Although the term African American is commonly used many women describe themselves as black, and many health statistics retain this term. Asian and Pacific Islanders, the designation used in official health statistics, refers to both Asian subgroups (e.g., Chinese, Japanese, Filipino, Korean, Vietnamese, Cambodian) and Pacific Islanders (e.g., native Hawaiians, Samoans, Guamanians, Tongans). Finally, most data on older women is obtained from Health. United States. 1998 with Socioeconomic Status and Health Chartbook. and Health Interview Surveys from 34 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 1990-1997. In addition, data on older American women (65 and older) is from Health Interview Surveys, the National Center for Health Statistics “Vital Statistics of the United States 1997,” U.S. Bureau of the Census Current Population Reports, and the United States Senate Special Committee on Aging. 6 OUTLINE OF THE STUDY Chapter Two, “Eliminating Health Disparities for Women” discusses actions that the federal government has taken in the two decades to try and eliminate common health disparities among women. This chapter illustrates how the federal government is gradually recognizing the central theoretical problem of using the biomedical approach to create women’s health and health care policy in general in this country. The biomedical model of health, traditionally used in devising health care policy, is one-dimensional and this uni-dimensionality creates narrow parameters for health and healing. A radical plural feminist model o f health takes into account multiple factors that affect a woman’s way of living and her health. Chapter Two outlines all the federal offices that are working to not only address women’s health problems but to redefine women’s health care. The biomedical model that is traditionally used by lawmakers in establishing health care policy reinforces health disparities in women. Ultimately, the biomedical model has defined health issues for women and decides how best to “control” these issues. 35 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Overall, Chapter Two examines the need to think critically about women’s health and reconceptualize the theoretical framework used to create health care policy. The chapter illustrates how a radical plural feminist model views women’s health holistically. This means thinking about health in terms of one’s economic and cultural position in society, as well as the role gender plays. Throughout this analysis race/ethnicity, class, and gender intersect where health is concerned. Chapter Three, “Diversity in Women’s Health Care,” presents evidence testing the hypothesis regarding gender stereotyping as well as race/ethnic stereotyping as it pertains to the formation of health care policy in this country. First, the chapter analyzes difference in the health priorities and approaches for African American, Native American, Latino, Asian/Pacific Islander, and Older Women. Public policy, legal discourse, and governmental approaches to medical treatment for women all have been shaped by the biomedical thereby ignoring the specific health needs, sometimes even perpetuating the problems of these diverse communities of women. Public policy has more often than not obscured the idea of difference when it comes to women’s health. Second, this chapter examines the conceptual problems with considering difference as a primary concept that creates health. The conflicts that arise from examining difference, however, can be an asset to creating health communities. By considering all perspectives of women’s health, insights can be gained on how to solve health problems in a country that has such diverse social and cultural communities. Third, various communities of women are examined. The central questions posed are: what is the current situation for diverse communities of women, what are their health issues, and how have these health issues been treated by the legal, the political and, most 36 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. importantly, the health community. The common theme that emerges is: women of color, older women, and poor women have been marginalized and harmed by the biomedical, dominant approach to health care in this country. Further, these groups of women have had an invisible voice, as health care policy is considered for the next century and beyond. Chapter Four, “Gender Violence and Women’s Health,” illustrates the complexity involved when addressing women’s overall health by examining violence against women. This chapter presents evidence testing the hypothesis that the elimination of bias in treatment as well as in research can better the health o f a woman who has experienced violence. Violence against women is now labeled a common health problem by many health professionals i.e., the American Medical Association. Violence, however, has a complex relationship with the health care system A battered woman seeks medical help first before any other. The biomedical model does not address the problem. From this model, the cause of an injury is not of concern to the health professional. Treatment of the injury is where the problem begins and ends. Yet, every health care survey of diverse communities of women places violence as a top health hazard for women. Violence, however, is viewed differently by various groups of women. Policymakers are concerned about the cost effectiveness of health care. It is not cost effective to treat continuously injuries to the same individual. It is cost effective to try and stop the violence altogether. If a radical plural model is applied in instances of violence quite possibly various solutions can be formed that meet the diverse needs of diverse communities. 37 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. In order for this to occur, an examination of the relationship between power and social control that results in violence against women is necessary. The treatment victims of violence receive depends not only upon their gender but their race, class, and age. A radical plural feminist model addresses the inherent problems of all forms of discrimination that occur when victims of violence enter the health care system. Policymakers felt they began to address the issue of gender violence by passing the Violence Against Women Act in 1994. Chapter Four addresses this complex Act and the problems that have developed concerning its application to various groups of women especially, those who are Native American and those that are new immigrants to this country. In the final analysis, violence is not a singular phenomenon, rather, it is complex and its affect is as diverse as the many groups of women who experience it. Women of color who experience violence must confront a medical system that not is in many ways embedded with racism and classism. Chapter Four, examines African American, Native American, Hispanic, Asian American, Older Women’s very diverse experiences with violence and the health care system. Also included are new ways that these groups have proposed to address violence that they believe are beneficial to their communities as well as all communities of women. Finally, in Chapter Four, challenges for eliminating violence against women are presented. A crucial step most groups of women argue is to examine violence as a multi dimensional health issue, one that involves all women. Violence may occur in all communities of women but it cannot be treated homogeneously. In addition, violence must be viewed as a health problem that is linked to all public sectors in society. The 38 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. structure of the health care system must intersect with other public arenas if violence against women is to be reduced. Chapter Five, is entitled “Health Insurance and Access to Health Care.” This analysis would not be complete without presenting evidence that supports the hypothesis that access to care improves overall health of women. In this chapter, how women gain, if they do, access to health care in this country is discussed. Diversity issues cannot be adequately addressed without linking them to financial access. A radical pluralist feminist model of health care can address diversity as well as general access. Currently, policymakers seem to address insurance issues (for many reasons not discussed in this study) and not diversity issues. Nevertheless, this chapter argues that if a woman does not have financial access to medical care, her health, and her family's health are at risk. Most of the marginalized groups discussed in this analysis are poorer, and, therefore, do not have as much access as other groups of women. If a woman has no coverage, she is basically an outsider, relying on health care only in crisis situations. An example of access inequities facing Hispanics is used. ‘Hispanics comprise nine percent of the total female population. They are one of the fastest-growing and most diverse groups in the country and are expected to increase to eleven percent of the population by 2010.” This group of women compared to all others, has the largest percentage of under- and uninsured. They are less likely than any other group of women to receive preventive or regular care. Policymakers must address access by these women as well as immigrant women if we are to create healthy communities. 39 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. The bottom line is that health care reform must enable all people to obtain coverage, and quality care regardless of their situation. Financial as well as social barriers must be eliminated. Currently, there are many resources that can be used to create innovative ways to ensure health. Chapter Six, “Women’s Health Care Policy,” addresses various health care policy proposals. Feminist health care activists have raised the consciousness of women about their health. Now activists are pressuring congress to create policies that assure health. This chapter outlines general problems that policymakers face, then specific actions and proposals submitted by African American, Native American, Hispanic, Asian/Pacific Islanders, and Older Women’s groups to help solve the current health care crisis faced by women are discussed. ‘It would be a mistake to assume that just because one recognizes the need to value women’s voices, things will change.” The job of change is immense and must occur incrementally. The first step is listening, to diverse voices of women. Innovative programs for positive change will come from within the various communities who know and understand the health issues they face. As change comes from within, it can also produce positive action and change for the system at large. 40 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. CHAPTER ENDNOTES 1 See Jo-Ann Lamphere Thorpe, and Robert J. Blendon. The Impact of Population Aging on Women (Southport: Southport Institute of Policy Analysis, 1991). 2 National Center for Health Statistics. Health United States. 1998 (Hyattsville: Public Health Service, 1998). (Note: based on 1986-1995 surveillance data) 3 Teresa M. Rackauckas. “Women in Medicine: Numbers Growing, Roles Changing,” American Medical News. November 9, 1996, 40-1. 4 Report of the Feminist Majority Foundation and American Women’s Medical Association (AMWA)(Washington, D.C.: AMWA, 1996). 5 Ellen Lewin and Virginia Olesen, eds. Women’s Health and Healing: Towards a New Perspective (New York: Tavistock, 1985). 6 Evelyn C. White, ed. The Black Women’s Health Boole Speaking for Ourselves (Seattle: Seal, 1994). ' The Boston Women’s Health Collective. The New Our Bodies. Ourselves for the New Century (New York: Simon & Schuster, 1998). 8 S.J. Ventura et al. “Report on Final Natality Statistics, 1996.” Monthly Vital Statistics Report Vol. 46, No. 11, Supplement (Maryland: National Center for Health Statistics, June 30, 1998). 9 Sharon Bernstein. “County C-section Rule Took Heavy Human Toil,” Los Angeles Times Sunday, January 25, 1998, Al. 1 0 Elizabeth Fee, ed. Women and Health: The Politics of Sex in Medicine (New York: Baywood, 1983). 1 1 The Boston Women’s Health Book Collective, preface by Byllye Avery. 1 2 Elizabeth Fee, ed. Women and Health: The Politics of Sex in Medicine. 1 3 The Boston Women’s Health Book Collective, preface by Byllye Avery. 1 4 Elizabeth Fee, ed. Women and Health: The Politics of Sex in Medicine. 1 5 National Institutes of Health. Opportunities for Research on Women’s Health (Maryland, 1992). 41 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 1 6 Margaret Chesney, and Elizabeth Ozer. “Women and Health: In Search of a Paradigm,” Women’s Health: Research on Gender. Behavior, and Policy (1995) 1:3-26. 1 ' World Health Organization. Women’s Health Counts: Vienna Statement on Investing in Women’s Health in the Countries of Central and Eastern Europe (Copenhagen: WHO Regional Office for Europe, 1994). 1 S See International Union v. Johnson Controls. Inc.. 111 S. Ct. 1196 (1991). 1 9 Coronary heart disease (CHD), including angina (chest pain) and heart failure, results in approximately 34 percent of deaths in women in the United States according to the National Center for Health Statistics. Of the screening and diagnostic tests available for heart disease, few have been specifically tested on women; thus, their efficacy in women is unknown. 2 0 Centers for Disease Control and Prevention, HIV/AIDS Surveillance Report (December 1997). 2 1 Nancy Krieger. “Racism, Sexism, and Social Class: Implications for Studies of Health, Disease, and Well-Being,” American Journal of Preventive Medicine 9: 82-122, 1993. 2 2 R. Cooper and R. David. “The Biological Concept of Race and Its Application to Epidemiology.” Journal of Health and Public Law 11:97-116. 1986. 2 3 R _ Lewontin. “Human Diversity,” Scientifica America 12:155, 1982. 2 4 R. Cooper. “Celebrate Diversity - Or Should We?” Ethnicity 1:3-7, 1991. x 5 J.R. Feagin. Racial and Ethnic Relations. 3rd edition (New York: Prentice-Hall, 1993). 2 6 Nancy Kreiger and Marilyn Bassett. “The Health of Black Folk: Disease, Class, and Ideology in Science,” Monthly Review 38:74-85, 1986. 2/ Nancy Krieger and Elizabeth Fee. “What’s Class Got to Do With It? The State of Health Data in the United States Today,” Socialist Review 23:59-82, 1993. 2 8 National Center for Health Statistics. Health. United States. 1998 with Socioeconomic Status and Health Chartbook (Maryland: National Center for Health Statistics, June 1998). 2 9 Samual Polack, and J. Grozuczak. Reagan. Toxics and Minorities: A Policy Report Urban Environment Conference, Washington, D.C. 1984. 5 0 Nancy Kreiger. “Racial and Gender Discrimination: Risk Factors for High Blood Pressure?” Social Science Medicine 30:1273-1281. 1990. 42 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 1 Nancy Kreiger. “Racial and Gender Discrimination: Risk Factors for High Blood Pressure?” 1273. 3 2 Helen Cabral. “Foreign-born and US-bom Black Women: Differences in Health Behaviors and Birth Outcomes,” American Journal of Public Health 80:722-724, 1990. 3 3 S. Devesa, and E.L. Diamond. “Association o f Breast Cancer and Cervical Cancer Incidence with Income and Education Among Whites and Blacks,” Journal of the National Cancer Institute 65:515-528. 1980. 3 4 S. Devesa, and E.L. Diamond. “Association o f Breast Cancer and Cervical Cancer Incidence with Income and Education Among Whites and Blacks,” 518. 3 5 See especially R.E. Zambrana. “A Research Agenda on Issues Affecting Poor and Minority Women: A Model for Understand Their Health Needs,” Women’s Health 12:137-160, 1987; M.B. Bennett, “Afro-American Women, Poverty and Mental Health: A Social Essay,” Women’s Health 12:213-228, 1987; Marilyn Bassett and Nancy Kreiger. “Social Class and Black-White Differences in Breast Cancer Survival,” American Journal of Public Health 76:1400-1403, 1986. 3 6 R.E. Zambrana. “A Research Agenda on Issues Affecting Poor and Minority Women: A Model for Understand Their Health Needs,” 155-60. 3 7 bel hooks. Sisters of the Yam: Black Women and Self-Recovery (Boston: South End Press, 1993). 3 8 H. Neighbors. “The Distribution of Psychiatric Morbidity in Black Americans: A Review and Suggestions for Research,” Community Mental Health Journal 20:5-18, 1984. 3 9 Neighbors. ‘T he Distribution of Psychiatric Morbidity in Black Americans: A Review and Suggestions for Research,” 10-12. 4 0 Sheryl Burt Ruzek. The Women’s Health Movement (New York: Praeger Publishers, 1978).' 4 1 See U.S. Department of Health and Human Services. “Report of the Secretary’s Task Force on Black and Minority Health,” l:Executive Summary Washington, D.C. 1985 and F.M. Trevino and A.J. Moss. “Health Indicators for Hispanic, Black, and White Americans.” Vital and Health Statistics. Series No. 10, No. 148. DHHS Publication No. (PHS) 84-1576. (Washington, D.C.: National Center for Health Statistics, 1984). 4 2 U.S. Department of health and Human Services. Women’s Health Report of the Public Health Service Task Force on Women’s Health Issues, Vol. ft Washington, D.C., 1985. 43 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 4 3 W.J. Miller and R. Cooper. “Rising Lung Cancer Death Rates Among Black Men: The Importance of Occupation and Social Class,” Journal of the National Medical Association 74:253-258, 1982) and M. W. Otten. “The Effect of Known Risk Factors on the Excess Mortality o f Black Adults in the United States,” Journal of the American Medical Association 263:848-850. 1990. 4 4 U.S. Department of Health and Human Services. “Health Status of Minorities and Low-Income Groups: Third Edition,” GPO:199l 271-848/40085. Washington, D.C. 1991. 4 5 Ellen DuBois, and Vicki Ruiz, eds. Unequal Sisters /New York: Rutledge Press, 1996). 4 6 Zellah Eisenstein. The Radical Future of Liberal Feminism (Boston: Northeastern University Press, 1983) Introduction. 4 7 Zellah Eisenstein. The Female Body and the Law (Berkeley: University of California Press, 1988) 5. 4 S Michel Foucault, trans. Robert Hurley. The History of Sexuality: Volume I: An Introduction. (New York: Vintage Books, 1980) Chapter 1. 4 9 bel hooks, Feminist Theory: From Margin to Center (Boston: South End Press, 1984) conclusion. 3/ Rosalind Petchesky. Abortion and Woman’s Choice (Boston: Northeastern University Press, 1985). Petchesky describes the horrific affects contraceptive experimentation had on various groups of women. 5 1 Petchesky, Abortion and Woman’s Choice 89-96. 5 2 Petchesky, Abortion and Woman’s Choice 88. 5 3 Foucault, The History of Sexuality: Volume I: An Introduction Chapter 1 . 5 4 Eisenstein, The Female Body and the Law 25. 5 5 Sheryl Ruzek, et al. Women’s Health: Complexities and Differences 19. 5 6 Testimony from Congressional Hearings on National Health Care Initiative H.R 16, Summer 1997. 5 7 Eisenstein, The Female Body and the Law 228. 44 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 5 8 Ruzek, et al., “Social Biomedical, and Feminist Models of Women’s Health,” American Journal o f Public Health 83:6-8. 5 9 Eisenstein, The Female Body and the Law 228. 6 0 Testimony from Congressional Hearings on National Health Care Initiative H.R. 16, Summer 1997. 6 1 Jose Novoa. “At Times, the Problem is Economics, Not Racism,” in Los Angeles Times. Sunday September 28, 1997, Opinion Section I. 6 2 Hector Tobar. “A New Tide of Latino Activism,” Los Angeles Times Monday, April 13, 1998, A l, A16. 6 3 The Boston Women’s Health Book Collective. The New Our Bodies. Ourselves (New York: Simon & Schuster, 1997) 707. 6 4 Rosemaria Zayas and Martha Ways. “A Letter to Ms..” Ms. Magazine May 1997, 4. 6 5 Telephone conversation with Anne Notac, policy coordinator for the National Women’s Health Network, Washington, D.C., July 1998. 6 6 National Women’s Health Network. “Information Brochure,” (Washington, D.C., 1998) 6 1 National Black Women’s Health Project. “Our Story,” (Washington, D.C.:NBWHP, 1998). 6 8 National Black Women’s Health Project. “Our Story,” (Washington, D.C.:NBWHP, 1998). 6 9 National Black Women’s Health Project. “The Public Education and Policy Program.” (Washington, D.C.:NBWHP, 1998). /0 National Black Women’s Health Project. ‘The Public Education and Policy Program,” (Washington, D.C.:NBWHP, 1998). 71 Native American Women’s Education Resource Center. “Informational Brochure,” (Washington, D.C.: 1998) 7 2 National Latina Health Organization. “Mission Statement,” (California: NLHO, 1997). 7 3 National Asian Women’s Health Organization. “Mission and Goals,” (California: NAWHO, 1998). 45 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 7 4 National Asian Women’s Health Organization. “Mission and Goals,” (California: NAWHO, 1998). 7 5 National Asian Women’s Health Organization. “Accomplishments of the National Asian Women’s Health Organization,” (California: NAWHO, 1998). 7 6 Older Women’s League. 1998 Membership Brochure (Washington, D.C.:OWL, 1998). 7 7 Older Women’s League. 1998 Membership Brochure (Washington, D.C.:OWL, 1998). 7 8 The meaning of racial/ethnic classifications is a subject of intense debate and controversy. In U.S. census and survey data, respondents are generally asked to report their racial group as: white, black; Asian or Pacific [slander; Aleut, Eskimo, American Indian; or other. In another question, information about Hispanic national origin is asked and persons of Hispanic origin may be of any racial categories. When individuals have an opportunity to self-define their race, a small but sizeable percentage report their race as “other” rather than one of the four major racial groups. These categories oversimplify race/ethnic origin, but they are social designations used for the U.S. census and survey purposes. 46 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. CHAPTER II ELIMINATING HEALTH DISPARITIES FOR WOMEN 1 OVERVIEW Feminist health activists, as the last chapter indicated, have raised women’s consciousness about their health. Their messages encourage women to think critically about their bodies and the quality of care they receive from the system. In Health United States. 1998, as stated earlier, for the first time the link was made between health, ethnicity, and income. In the survey, women and men were asked to self-assess their health. Self-assessed health is a broad indicator of health and well being, which incorporates a variety of physical, emotional, and personal components of health. Several studies have shown self-assessed health to be a valid and reliable indicator of a person’s overall health status and a powerful predictor of mortality and changes in physical functioning.1 The results were that poor women were 1.6 times as likely to say their health was fair or poor as women near the poverty line and over 5 times as likely as high-income women to report their health as less than good were. Income disparities in self-assessed health were similar across race and ethnic groups; poor women were four to five times as likely to be in fair or poor health as high-income women (see figure 2 .1). Healthy People 2000: National Health Promotion and Disease Prevention • - 2 Objectives is a lengthy statement of the government’s national health agenda. This plan 47 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Figure 2.1. Fair or poor health among women 18 years of age and over by family income, race, and Hispanic origin: United States, 1995 E 3 Poor B Near Poor □ Middle Income □ High Income W hite. Black. Elis panic non- non- Hispanic Hispanic National Center for Health Statistics. Health United States. 1998 (Maryland: NCHS. 1998) 99. defines three broad goals: to increase the span of healthy life for Americans, to reduce health disparities among Americans, and to achieve access to preventive services for all Americans. The plan, however, does not address specific health issues of women especially women from diverse communities. This has caused health activists from all over the country to mobilize, pressuring the government to include women’s health issues, especially those of minority women, in this national plan. The constant lobbying is beginning to have an impact. The development of a new report Healthy People 20103 places women at the center of creating a healthy nation. Many federal government offices are actively participating in the national agenda. 48 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. U.S. Department of Health and Human Services As part of its overall mission to promote and protect the Nation’s health and to provide essential human services, the U.S. Department of Health and Human Services (HHS) is pursuing a comprehensive agenda for improving women’s health. HHS is promoting access to a full range of culturally sensitive health care services for women of all ages, all racial and ethnic backgrounds, and all socioeconomic and education levels. From 1995 to the present, HHS has designed several initiatives specifically targeted to minority women including research on racial and ethnic differences in disease, outreach programs for women who speak little English, recruitment strategies for minority women into health professions, and health care and health education programs on cultural competence. One such example is HSS Healthy People 2010 Initiative4, which focuses on many areas concerning minority women’s health. President Clinton has committed the Nation to an ambitious goal by the year 2010: eliminate the disparities in six areas of health status experienced by racial and ethnic minority populations while continuing the progress that has been made in improving the overall health of the American people. The identified six focus areas in which racial and ethnic minorities experience serious disparities in health access and outcomes are Infant Mortality, Cancer Screening and Management, Cardiovascular Disease, Diabetes, HIV Infection and Child and Adult Immunizations. These six health areas were selected for emphasis because they reflect areas of disparity that are known to affect multiple racial and ethnic minority groups at all life stages. HHS has included in the 1999 budget an increase of $80 million to reduce the above disparities.5 49 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. HHS is committing itself to identifying and addressing the underlying causes of higher levels o f disease and disability in racial and ethnic minority communities. These include poverty, lack of access to quality health services, environmental hazards in homes and neighborhoods, the need for effective prevention programs tailored to specific community needs. According to HSS estimates, minority women currently experiencing poorer health status are expected to grow as a proportion of the total U.S. Population; therefore, the future health of America as a whole will be influenced substantially by the success in improving the health of these racial and ethnic minorities. A national focus on disparities in health status is particularly important as major changes unfold in the way in which health care is delivered and financed.6 Eliminating racial and ethnic disparities in health requires enhanced efforts at preventing disease, promoting health and delivering appropriate care. This will necessitate improved collection and use of standardized data to correctly identify all high- risk populations and monitor the effectiveness of health interventions targeting these groups. Research dedicated to a better understanding of the relationships between health status and different racial and ethnic minority backgrounds will help the government acquire new insights into eliminating the disparities and developing new ways to apply existing knowledge toward this goal. Improving access to quality health care, the delivery of preventive and treatment services requires working more closely with various communities and organizations to identify culturally sensitive implementation strategies. U.S. Public Health Service Programs Through its agencies and office, the U.S. Public Health Service (PHS) tries to address health conditions that are more prevalent or 50 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. more serious in women. New collaborative initiatives are underway to reach the Nation’s diverse population of minority women. PHS agencies and offices are beginning to address language and cultural issues and to provide targeted health education messages.7 PHS’s goal for women is to work to increase access to health care services and preventive interventions. A few examples of offices and programs are: Office on Women’s Health. The PHS Office on Women’s Health (OWH), within the Office o f the Secretary o f HHS, is the focal point for women’s health research, service delivery, and education programs within HHS. The OWH advances and coordinates a women’s health agenda across the agencies and offices of the PHS, including the Office of Minority Health (OMH), the Office of HIV/AIDS Policy, Agency for Health Care Policy and Research (AHCPR), Centers for Disease Control (CDC), Food and Drug Administration (FDA), Health Resources and Services Administration (HRSA), Indian Health Service (HIS), National Institutes of Health (NIH), and the Substance Abuse and Mental Health Services Administration (SAMHS A). The OWH also works with other government agencies and consumer and health care professional groups to advance women’s health.8 The OWH works to: promote access to gender-appropriate, culturally sensitive, and comprehensive health promotion and health care services for women of all ages, races, ethnicities, sexual orientations, and socioeconomic and educational levels strengthen and sustain research on diseases, disorders, and conditions affecting women educate and inform women about women’s health issues and programs 51 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. - support health care professional training in the diagnosis, management, and prevention of health conditions in women foster the recruitment, retention, and promotion of women in the health professions and in scientific careers9 Among the steps taken to achieve these goals was the appointment of the country’s first Deputy Assistant Secretary for Women’s health at HHS. The 1991 establishment of the Office of Research on Women’s Health at the NIH, the Office for Women’s Services (1992) at SAMHS A, the CDC Office of Women’s Health (1994), has helped increase attention to the special health needs of women. Activities being undertaken by OWH include: the implementation o f the National Action Plan on Breast Cancer; the development of a women’s health curriculum for health care professional training programs; the establishment of a Federal Coordinating Committee on Women’s Health and the Environment; the promotion and coordination of violence prevention activities for women; - the creation and implementation of initiatives on promoting health behavior in young women; the development of programs to foster the recruitment, retention, and promotion of women in scientific careers and health professions; and the development of a national clearinghouse on women’s health, the National Women’s Health Information Center.1 0 Additionally, the OWH is involved in specific programs on health issues for minority women, including conferences undertaken in collaboration with minority women’s and health professional organizations. In January of 1997, 52 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. OWH hosted “Bridging the Gap: Enhancing Partnerships to Improve Minority Health.” As a result a panel of experts was created to serve as a resource for the Department. - Office of Minority Health The Office of Minority Health (OMH) works to improve the health status of minority and low-income persons and to reduce disparities in the incidence of premature death, chronic diseases, and injuries. Currently, the OMH is collaborating with State and national agencies to increase health care access for women of limited English by supporting projects to identify effective practices in bilingual/bicultural health services. Plans are also under way to address culturally competent and linguistically appropriate care in such areas as maternal and child health, and addictive disorders in women. The OMH administers the Minority Community Health Coalition Demonstration Grant Program that fosters community coalition building in the development and implementation of programs to reduce minority health risks. Critical health priorities addressed concerning minority include cancer, cardiovascular disease, H3V/AEDS, diabetes, and substance abuse. The OMH also sponsors a Minority Health Resource Center.1 1 Other non-Public Health Services Offices are also beginning to develop programs to better women’s health and meet the goals of Healthy People 2010. They are: Office of Population Affairs The Office of Population Affairs (OP A) has overall policy and management responsibility for the Office of Family Planning and the Office of Adolescent Pregnancy Programs. Part of that oversight includes the 53 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Title X Family Planning Program, which provides reproductive health and family planning services to four million women annually. Approximately 85 percent of these women are low income and 30 percent are adolescents. The Title X program also supports nurse practitioner training for minority students who will provide services in high need areas.1 2 Office of HIV/AIDS Policy The Office of HTV/AIDS Policy (OHAP) serves as the coordinating office for implementing the PHS guidelines for HIV counseling, testing of pregnant women and infants, and therapies to reduce HTV transmission. The office develops consumer materials to inform women of the benefits of HIV counseling and testing. OHAP helps to develop standards of care and quality assurance systems for the treatment if HTV disease with a particular concern for State Medicaid programs. Women and minorities are especially vulnerable to erosions of publicly financed care, and OHAP works to prevent reduced access to appropriate care. Costly new drug regimens will likely exacerbate the inequities in access and availability of care among women. The Office’s goal is to meet these challenges so that women and minorities can benefits from these new treatments.1 3 Agency for Health Care Policy and Research The Agency for Health Care Policy and Research (AHCPR) conducts health care research and develops materials for health care professionals and consumers on such topics as maternal and infant health, breast and cervical cancer screening, and HTV infection. The Agency advocates studies related to access to care for minority, low- income, and/or disabled women and has published a series of papers on the use of 54 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. health services by Hispanics and American indian/Alaska Natives. The AHSPR sponsors Medical Treatment Effectiveness Program Research Centers on Minority Populations. These Centers conduct research on differential mortality and morbidity for minority populations and determine cost benefit/cost effectiveness o f minority-targeted health programs.1 4 Centers for Disease Control and Prevention The Centers for Disease Control and Prevention (CDC) mission is “to improve health by preventing disease, disability, and injury; monitoring health status; promoting health behaviors; and fostering healthful environments.” The Center has seven priority areas: breast and cervical cancer, HTV/IADS, other STDS, tobacco use, injury and violence, reproductive health, and older women’s health. The CDC supports numerous health promotion, disease prevention, and research activities relating to minority women.1 5 In 1994, the CDC published Chronic Disease in Minority Populations1 6 , a comprehensive set of health indicators on chronic disease in minority populations. The CDC has also examined the relationship between race/ethnicity and socioeconomic status and its effect on women’s health; supported culturally appropriate interventions to reduce morbidity and mortality and mortality from breast and cervical cancer; expanded delivery o f HIV/AIDS and other STD-prevention services in minority communities with special attention to the needs of minority women; helped develop, support, and evaluate community-based interventions for preventing violence including family and intimate violence; 55 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. developed health promotion programs for African Americans and Hispanics at risk for diabetes; and developed implemented a fetal alcohol syndrome surveillance system in conjunction with several States and the Indian Health Service.1 Food and Drug Administration Part of the Food and Drug Administration’s (FDA) focus is on such issues as the participation of women and minority populations in clinical trials for drugs and medical devices, the need for contraceptive products that protect against STDS including HIV/AIDS, and ensures the safety and effectiveness of quality mammograms. The FDA also distributes consumer information on women’s health issues. Outreach to minority women is provided through a series of projects coordinated by the FDA Office of Women’s Health. The Minority Women’s Health Empowerment Workshops are an ongoing health information series conducted in the Mid-Atlantic Region by the FDA in partnership with local institutions. In the Southeast Region, a consortium of community organizations is working with the FDA to implement a conference on Hispanic women’s health. Another field activity based in Los Angeles seeks to encourage the use of health tests such a Pap smears among Asian and Pacific Islander women. The project is creating and translating health information on cancer screenings and other preventive services into several Asian languages. The FDA’s Office o f Consumer Affairs has established a bilingual health promotion and disease prevention program, which is being implemented through historically black colleges and universities. Key issues include women’s health. 56 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. The FDA also participates in a coalition with the National Urban League and the Food Marketing Institute to bring food labeling and nutrition messages to mothers and infants, young girls, and families in the African American population. Another FDA initiative is the development of a culturally competent Spanish- language version of its booklet explaining the health effect of condom use.1 8 Health Resources and Services Administration The Health Resources and Services Administration (HRSA) develops health resources for underserved populations. The HRSA targets underserved, elderly and minority women through health education projects and health care provider training and by increased access to primary and preventive health care for women at community and migrant health centers. HRSA supports African American, Hispanic, and American Indian/Alaska Native and multicultural Centers of Excellence at medical schools across the country that are developing curricula, faculty, and research on minority populations. HRSA’s Women’s Health Coordinating Committee is responsible for determining how HRSA’s 80 programs can effectively meet the health needs of women. HRSA also has established an interagency Women’s Health Research Work Group, which is charged with three responsibilities: to identify ways in which gender-specific research can generate new knowledge about women’s health; to improve health outcomes for women; and to identify opportunities for HRSA to contribute to women’s health research - either through its programs or via partnerships with other agencies.1 9 57 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Indian Health Service The Indian Health Service (HIS) provides American Indian/Alaska Native women with health care services and assistance that focus on reproductive health, cancer, diabetes, maternal and infant health, alcohol and other drug abuse, family violence, and healthy aging. Specific initiatives include expanded availability or preventive health services such as Pap smears and mammograms in HIS clinics, an injury prevention program, violence education programs, and the appointment of an Indian Women’s Health Advisory Committee to further women’s health promotion projects in Indian country.2 0 National Institutes of Health The National Institutes of Health (NTH) provides support for biomedical, behavioral, and epidemiological research on women’s health. The NIH Office of Research on Women’s Health (ORWH) goal is to strengthen research on health conditions affecting women, as well as to ensure that research conducted and supported by the NIH adequately addresses women’s health issues. ORWH also works to ensure that women are represented in NIH- supported studies. The ORWH supports research involving the prevalence of risk factors for disease in women of different racial, ethnic, and economic groups.2 1 The NTH Office of Research on Minority Health (ORMH) is cosponsoring an infant mortality initiative with the National Institute of Child Health and Human Development and the National Center for Nursing Research. The initiative supports demonstration projects studying causes of and interventions for infant mortality and low birth weight babies among minority women.2 2 Other NIH-sponsored studies and activities addressing women’s health issues are 58 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. investigating African American mother-infant patient populations in inner cities and health outcomes for pregnant minority women and their infants; A special initiative focused on improving pregnancy outcomes for Native Hawaiian, American Indian/Alaska Native, and Hispanic women living in rural areas. a Spanish-language brochure on pregnancy covering such topics as nutrition and weight gain, birth defects, fetal alcohol syndrome, and smoking and drugs.2 3 The NIH has also initiated studies on osteoporosis in Mexican American women and implemented a campaign to increase awareness about lupus among African American women. The NTH sponsors HIV prevention investigations among minority women including one measuring sources of stress in the lives of minority women at risk for HTV infection. NIH is currently sponsoring studies investigating hypertension and obesity in African American women and nutrition in Hispanic women as well as a study related to stroke in African American, Caucasian, and Hispanic women. Other research programs for African American, American Indian/Alaska Native, and Hispanic women study culturally sensitive interventions in the areas of smoking cessation and barriers to screening for cervical and breast cancers. In 1991 the NIH launched the Women’s Health Initiative (to be discussed further in Chapter Six), a 15-year S628 million multi-site study examining the major causes of death, disability and frailty, heart disease and stroke, breast cancer and colorectal cancers, and osteoporosis in older women of all races and socioeconomic strata. It is also studying behavioral characteristics to prevent disease in older women.2 4 59 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Substance Abuse and Mental Health Services Administration The Substance Abuse and Mental Health Services Administration (SAMHSA) identifies the need for women’s substance abuse and mental health services, recommends policy, fn particular, the SAMHS A works to ensure that the needs of minority women are addressed. It has identified six priority issue areas for women: physical/sexual abuse, women as others/caregivers, HIV/ADDS, aging women, women in the criminal justice system, and multiple diagnosis - multiple mental health and substance abuse problems. Efforts include: providing grants to States and communities working with minority and migrant women substance abusers; funding demonstration projects for treatment programs/treatment enhancements geared to racial and ethnic populations; establishing programs top provide comprehensive substance abuse treatment for incarcerated women and for women and their children in residential settings; developing strategies to prevent AIDS among Hispanic women/and developing HIV/AIDS outreach programs for young women and others at high risk.2 5 The programs and activities in women’s health of the government provide a foundation from which to implement meaningful policies and programs to improve the health of all women. More work needs to be done however, in integrating community health interests with the interests of the government as a whole. This requires as stated in the introduction a broadened definition of what constitutes women’s health, as well as a model that incorporates this definition. 60 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 THE HEALTH OF POOR WOMEN As the country has embarked upon welfare reform, Ruzek argues that poor women no longer have access to adequate care as a result of cutbacks in welfare funds. Recent data from the National Institutes of Health confirm her arguments. The 5-year time limit suggested for welfare would end the eligibility of nearly 2 million women, 37 percent of those who are now covered (and 37 percent of AFDC recipients). Cutting off Medicaid after 2 years would drop 61 percent of current recipients from the program.2 6 Since women represent a large percentage of the poor in the U.S.27, they have become one of the largest groups without access to health care2 8 (see figure 2.2 and table 2.1). In 1994-95 poor women with a health problem were almost three times as likely not to have seen a doctor within the past year as high-income women (see figure 2.3). There is a strong direct relationship between income and use of recent mammography. During 1993-94, high-income women 50 years of age and over were about 70 percent more likely than poor women to have received a mammogram in the past 2 years (see figure 2.4). African American women, who constitute the largest percentage of poor women, have higher death rates than Caucasian women from a number of diseases, including two of the leading killers, heart disease and stroke. In addition, their mortality rates are higher than those of Caucasian women are for most cancers (see table 2.2). In 1997, the reported cases of African American women with AIDS were also higher (4.9 times 61 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. greater) (see Table 2.3), homicide (4.9 times greater), alcohol-induced causes (2.8 times greater), and drug-induced causes (1.4 times greater). Figure 2.2. Reasons Women Give for Not Receiving Care in Past Year, 1996 30 ■ 23. P ercent of 20 - ■ Women Not Screened in Past Y ear jq . a 5 = 5 U u e Z = L 2 < [ R T j Source: Louis Harris and Assoc.. The Health of Women. 1996 Table 2.1. Percentage o f W om en (A ge 18 and older Living in Poverty, by R ace/E thnicity. 1990 Census W om en P ercentage Total 13.2 American Indian 29.2 African American 28.9 Latina 24.3 Asian/Pacific Islander 13.3 Caucasian 9.8 62 Source: Population Reference Bureau, Inc. Adapted from what the 1990 Census Tells Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Figure 2.3. No physician contact with in the past year among Women 18-64 years of age with a health problem by family income, race, and Hispanic origin: United States, average annual 1994-95 I E H Poor i H Near Poor j □ Middle or high 1 income W hite. Black. Hispanic non- non- Hispanic Hispanic Sources: CDC. NCI IS, National Health Interview Survey. Sec related Health United States. 1998. table 77. raceandHispanicori^rUnited Source: CDC, NCHS, National Health Interview Survey. Sec related Health. United States. 1998. table 80. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Table 2.3. AIDS cases and annual rates per 100,000 population, by race/ethnicity and sex, reported in 1997, United States_________ White, not Hispanic 2,485 3.0 Black, not Hispanic 7,880 58.8 Hispanic 2,578 21.5 Asian/Pacific Islander 64 1.5 American Indian/Alaska Native 36 4.7 Mortality rates from stroke, chronic obstructive pulmonary disease, and lung, breast, cervical and colorectal cancer among Hispanic women are about the same as or lower than those of Caucasian women (see table 2.4). However, mortality rates can vary by subgroup. For example, Puerto Rican women have a 15 percent higher death rate from ischemic heart disease than Caucasian women do, yet death rate from ischemic heart disease among Mexican American and Cuban women are lower than among Caucasian women. In addition, while the death rate for Cuban women from HTV7AIDS is 2.4 times higher than that of Caucasian women, the rate among Mexican American women is 5.4 times higher and that of Puerto Rican women is 20 times higher than the rate for Caucasian women. Asian/Pacific Islander women have lower death rates from most major diseases than Caucasian women (see table 2.4). However, injuries and suicide are the 4th and 8th leading killers of these women compared with 6th and 12th , respectively, for Caucasian women. Table 2.4 also shows that American Indian/Alaska Native women have lower death rates from most major diseases than Caucasian women with the exceptions of diabetes and cirrhosis of the liver. In addition, American Indian/Alaska Native women’s mortality rates for chronic liver disease and kidney disease are more than twice those for 64 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Caucasian women and their rates of death for accidents and homicide are almost twice those for Caucasian women. Mortality rates for these two minority groups are probably underestimated, as it has been determined that persons identified as Asian/Pacific Islander or American Indian/Alaska Native by Census Bureau data may be misclassified as Caucasian at death. Table 2.4. Age-Adjusted Mortality Rates for Selected M ajor Causes of Death for Cause Caucasian African American American Indian/ Alaska Native Asian/ Pacific Islander Hispani c Ischemic heart disease 98.5 165.3 75.4 56.2 69.6 Stroke 22.7 40.3 20.3 21.8 16.8 Lung Cancer 28.6 27.3 16.1 11.7 8.2 Breast Cancer 21.5 27.1 9.4 9.5 12.4 Chronic obstructive pulmonary disease 18.2 12.2 13.3 5.0 6.9 Colorectal cancer 10.9 15.5 6.3 6.6 9.4 Diabetes 9.5 25.4 20.9 6.8 17.3 Cervical Cancer 1.3 2.0 0.8 0.7 1.2 Cirrhosis 4.8 8.7 17.1 2.4 8.2 Note: Rate per 100,000 persons adjusted to the 1940 standard U.S. population Source. CDC, NCHS, National Vital Statistics System, 1990, Health United States 1998. Life expectancy for most minority women is lower than that for Caucasian women. In 1991, life expectancy for Caucasian women was 79.2 years; for Hispanic women, 77.1 years; for American/Indian Alaska Native women, 76.2 years; and for African American women, 73.5 years. The gap appears to be growing. For example, 65 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. between 1984 and 1992, the difference in life expectancy between African American and Caucasian women increased by nearly a year. Health care advocates argue that this is because there is an enormous gap in research concerning these groups of women.2 9 In 1988, Representative Pat Schroeder wrote and pushed through the Clinical Trials Fairness Act, legislation that requires women to be included in government-sponsored research. This Act, however, does not address the issue of diversity in clinical trials. According to the Office of Minority Health, minority women’s health issues will never be adequately addressed if research focuses solely on white women’s health issues. 3 COMMON DISPARITIES Breast cancer is the most common type of malignancy among women in the United States. The American Cancer Society has estimated that there will be 184,300 new cases and 44,300 deaths among women in the United States in 1998 (See figure 2.5). Overall breast cancer mortality has dropped slightly in recent years, reflecting an increase in survival rates among white American women. Among African American women, survival rates have declined. (See figure 2.6) The age-adjusted breast cancer incidence rate for white women from 1973 to 1992 was 12 to 29 percent higher than for African American women. Yet African American women, in 1995, were 28 percent more likely to die from breast cancer than white women are. The five-year relative survival rate is 69 percent for African American women with breast cancer, compared 66 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. . ; ^ .O O O T ; r UMsajmi ■ ■ ■ g - U ! - . ~"-a~ ; ^Ey5| pS$ ?g#6(feg(iP zmm9M - i.v V 2 0 .0 0 0 ; Source: American Cancer Sociely. “1998 Cancer Estimates," (Washington. D.C.: NCI, 1997) Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. with 85 percent for white women. Explanations for such poorer outcomes include findings that African American women, and to some extent Hispanic women, are often identified as having cancer at a later, more advanced state, they may lack access to state- of-the-art treatment, and they may be biologically at greater risk for more aggressive tumors. Studies have shown that 43 percent of African American women, versus 52 percent of white women, are identified with breast cancer at a point when the disease is still localized.3 0 Mammography is the current mechanism used for early detection that can enhance a woman’s survival. Yet in 1994, the National Cancer Institute departed from the recommendation of an annual mammogram for women age 40-49, stating that the 68 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. evidence was inconclusive that this practice was effective in saving lives, and left the decision largely up to a woman and her physician. This had a critical affect on public Source: National Institutes of Health, 1997 Health Interview Survey programs and the funding of mammography for poor, mostly minority women (see figure 2.7). According to the Health United States. 1998. individuals who come from families with higher incomes are the healthiest and enjoy greater longevity3 1 (see Table 2.4). Single mothers, especially women of color, according to this report, are the most likely to be in poor health due to environment, educational level, and income. As Davis states: 69 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. We have become cognizant of the urgency of contextualizing Black women’s health in relation to the prevailing political conditions. While natural forces frequently beyond our control undeniably assault our health, all too often the enemies of our physical and emotional well being are social and political.3 2 According to the National Institutes of Health, African American women are the largest group of people in the U.S. below the poverty level3 3 (refer to table 2.2). Their access to health care has become more and more limited in the 1990s as cutbacks take effect. Last year in California, African American women had the highest-age adjusted death rates for all categories o f causes except for motor vehicle deaths and suicides, compared with the female population as a whole. Deaths due to all cancers, including breast, lung and cervical, were higher for African American women than for any other race/ethnic group.3 4 According to Davis, two out of three poor adults are women, and 80% o f the poor in the U.S. are women and children.3 5 According to Health United States. 1998. there is a direct correlation between income and one’s health (see figure 2.7). Women are the majority of recipients of many health and nutritional programs sponsored by the federal government. Because African American women are disproportionately represented among the beneficiaries of these social services, they have been hurt most deeply by Welfare Reform and all of its cutbacks.3 6 This cycle of government cutbacks in order to strengthen the private nuclear family destroys poor people’s lives and makes ill-health inevitable. Standing at the intersection of racism, sexism, and economic injustice, poor women have been compelled to bear the brunt of this complex oppressive system. ‘Tor-profit hospitals often refuse 70 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. outright to treat poor, uninsured patients, and they engage in the unethical practice o f “dumping” welfare recipients on public hospitals, even when those patients EigurevT.8. ^ Source: Centers for Disease Control and Prevention, National Center for Health Statistics, National health Interview Survey. See related Health United States. 1998. are in urgent need of treatment.”3 7 As these individuals are pushed off the welfare rolls3 8 and access to public health is denied to illegal immigrants,3 9 the small white patriarchal units become stronger at the expense of people’s lives. 4 A BIOMEDICAL MODEL OF HEALTH As discussed in Chapter One, research and public policy have been generated through predominantly biomedical models that focus on a limited range of diseases and conditions taken out of context of women’s daily lives and felt needs. From a biomedical perspective, health is the absence of disease and infirmity. 71 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Most Americans hold the biomedical approach to health as the “truth”. E t is “objective” and non-discriminatory. This is portrayed daily through the media, as announcements of medical breakthroughs and scientific advances are reported. Rarely, does the public notice that scientists’ subjectively along with government choose health areas most worthy of being noticed. Since scientists are a rather small group of people- mostly economically and socially privileged, university-educated Caucasians, and predominantly male — there is every reason to assume that like other human productions, science reflects the outlook and interests of its producers.4 0 Scientists control our knowledge not only by their choice of subjects but in their manner of description. In the National Report on the Status of Women’s Health. 1996. for example, it is cited that one o f the main reasons for breast cancer mortality is lack of “appropriate education” of those women who are at highest risk.4 1 Government, in turn, through the media, translates this thought to the public in support o f the status quo. For example, on newscasts there is usually a segment on health. In these segments the audiences are told about new breakthroughs in medicine, but rarely are we told who has access to these breakthroughs. A biomedical model legitimizes science’s claim on public policy. This model is very narrow in that it assumes health care is needed when something is diseased, and a direct cure comes through established medicine. For women, the debate itself is connected to a patriarchal paradigm, which supports the white-middle-upper class male vision of creating healthy communities. This model makes two critical assumptions: (1) The scientific community is expert: research and outcomes are always correct. Government in turn nearly always follows recommendations based upon scientific evidence or “fact.” 72 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. (2) The scientific community represents the male culture, which separates man as knower (expert) from both woman and nature as the objects of knowledge. The patriarchy has always argued that there are twG different spheres: public and private. These two spheres differentiate woman from man socially and more importantly politically. The biomedical model affirms this separation by highlighting anatomical differences between man and woman. One example is abortion. In the public arena, much time was and is still being spent debating the legalization or de-legalization of partial birth abortions, yet the percentages of women having this procedure is very low. One percent of all abortions are performed after the 21st week and only .04% after the 24th. This is out of 1.5 million total annual abortions. Third trimester abortion is, in any case, illegal in most states. A recent editorial in The Nation states: supporters of the I.D.E. (late term abortion) ban emphasize the procedure’s gruesome details, but other late-term abortion techniques are gruesome, too. This is not, however, a crusade against grusomeness. If it were, we could expect to see Congressional conservatives working against the barriers that keep women from getting early abortions - parental notification, lack of Medicaid funding, abortion opponents who terrorize women and drive providers our of business - and cheering the Food and Drug Administration’s approval o f experimental studies of mifepristone (the generic version of RU-486), a drug that induces abortion. When the Population Council, which owns the patent on RU-486, ran into legal difficulties, Lawrence Lader of Abortion Rights Mobilization manufactured generic pills and got F.D.A. approval to distribute the pill experimentally in several locations. Those working on RU-486 continue to be threatened with boycott and murder.4 2 73 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Little time is spent debating heart research, even though the leading cause of death among all groups of women in the U.S. is heart attacks (58%) (see figure 2.8). According to Health. United States. 1998. in 1995 heart disease accounted for an estimated $79 billion in direct medical expenditures. In addition, this government study correlated income with gender and race/ethnicity for the first time. From 1979-89 death rates from heart disease declined as family income increased. The poorest women were 3.4 times as likely to die from heart disease as those with the highest incomes. At ages 25-64, income-related gradients in heart disease mortality were similar across sex, race, and ethnic groups. Within each income level, non-Hispanic black women had higher mortality from heart disease than non-Hispanic white women did. Source: National Institutes o f Health. PHS 162, 1993 74 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. AIDS is another example of an imbalance in research as well as treatment. The government focuses its policies on the biomedical approach: finding a cure. Rarely does government connect its medical policies to the social fabric in which this disease occurs. At the core of that fabric one finds problems o f poverty, drug abuse, teen pregnancy, lack of education, inadequate health care and social services, prostitution and child and spouse abuse.4 3 In order to have access to “the cure” one must clearly have resources, which these individuals do not. Research statistics indicate that African Americans, especially African American women, for example, are at increased risk for contracting AIDS. According to a recent survey of National Health by the U.S. government, African Americans account for only twelve percent of the U.S. population, but comprise thirty percent of AIDS cases. Included among those most currently at risk for acquiring HIV are poor, urban African American women and Hispanic women — disproportionately to the general population. African American and Latino women and girls accounted for 75 percent of all cases of female/adult/adolescent ADDS reported to the CDC in 1996. In 1996, the AIDS case rate was approximately 15 times higher among African American women and seven times higher among Hispanics than among white women (73,32, and 5 cases per 100,000 population, respectively).4 4 The concentration of the epidemic in African-American and Latino communities is in fact a marker of poverty. As stated in Chapter One, relatively little information has been collected that links economic status to health status. However, the AIDS Cost and Service Utilization Survey (ACSUS), which follows 1,949 adults and adolescents with 75 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. HTV/AIDS in ten cities, found that women in the sample are very poor - poorer than the men in the study. 55 percent o f the women had before-tax incomes of less than $5,000 in 1990, and only one percent had before-tax incomes greater than $40,000. (Comparable percentages for men in the survey were 31 percent under $5,000 and 12 percent over $40,000).4 5 The poverty of HIV-infected women has a profound impact on all health care policy issues. Anastos and Marte have written that ‘Tor women, their address alone places them at risk....poor black and Hispanic women are at unduly high risk for infection, whatever their life-style, because poverty and lack of resources and opportunity keep them in areas of high HIV sero prevalence”.4 6 Women in general are the fastest growing category of AIDS cases, and AIDS is now the fourth leading cause of death among women ages 24-44 in the U.S. There are certain biases common to discussion of HIV and women as a result o f the biomedical model. One is the tendency to define women as mothers, as evidenced in testing policy by the near-exclusive preoccupation with perinatal transmission. Critics have charged that women are regarded by the public and studied by the medical profession as vectors of transmission to their children and male sexual partners rather than as people with AIDS who are themselves frequently victims of transmission from the men in their lives. Government brochures on “safe sex” concentrate on describing ways to make the condom more palatable to the male sexual experience rather than either on ways to ensure the safety of the woman receptor or on sexual practices that are non-penetrative. The many public health messages recommending condom use have conveyed the impression that the male sexual experience is the primary focus. There is barely any reference in these discussions of the female condom.4 7 76 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Part of the reason for this is women’s past exclusion from HIV/AIDS research. Their exclusion from research has serious implications. On an individual level, trials have been a major source of access to new therapies and to comprehensive care for many people with HIV/ADDS, especially gay men. On a broader level, lack of inclusion has stalled the expansion of knowledge of the efficacy of interventions and various treatments. Women are denied access to HIV-related research on four counts: 1) Their reproductive capacity; 2) Their minority status and lack of access to health care generally and to research in particular; 3) Their drug use and presumed noncompliance with research protocols; and 4) Their ineligibility for trials focusing on AIDS itself, since many do not meet the AIDS definition.4 8 In addition, different lifestyles have caused many women with AIDS to fall through the crack. Many in society, for example, express little compassion for the prostitute who acquires AIDS from her customer. Prostitutes have few economic alternatives, and even fewer exist for those that are drug-addicted. A dehumanizing aspect of prostitution is that it is essentially an involuntary form of labor that grows out of the economically disadvantaged position in which women find themselves from within the patriarchy 4 9 The biomedical focus on "diseases” and finding “wellness” through direct cures ignores these women and others: it makes them invisible. In the long run, as society reinforces the quest for a cure, communities become sicker and quite possibly incurable. This model perpetuates the unspoken given: maybe there are those in society that are expendable. 77 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. The welfare state for many years seemed to challenge this idea. The basic idea of the welfare state is that everyone, especially the poor (women), should be protected by the state - which included access to basic health care. In 1998, health Is becoming more and more expensive and the state seems to support the biomedical approach that if we can find a “cure” for a few (those that can afford it and are worthy of saving) then it is worth the expenditure. The underlying false assumptions guiding government and health professionals have been that the technology of biomedicine is applicable to all consumers of health services, irrespective of individual social, cultural, and class variations. The biomedical model of health does not contextualize diversity among women. In order to create healthy communities, the scope of policymakers approach must be broadened. Indeed, the biomedical model has had a positive effect on thousands of people’s lives providing needed cures for many ailments. However, this model has not reached all communities and is very expensive. 5 SOCIAL MODELS OF HEALTH A biomedical model does not adequately address differences in women’s health between men and women, men and men, women and women within or across social groups. It is also not clear what direction this model provides for preventing health problems that are rooted in social and cultural factors. The biomedical model itself taking action to avoid disease, seems particularly ill suited for reducing many of the 78 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. physical and emotional conditions that threaten women’s health and well-being. For example, trying to prevent the health consequences of violence does not get to the core social, economic, and cultural factors that cause the violence that causes the injury.5 0 Physicians themselves increasingly question medicalizing social problems as medical problems. Social and behavioral scientists have long recognized that women’s health problems must be understood as socially, culturally, and economically produced. They are not isolated, individual, biological events that can be explained outside the contexts in which they emerge. At the same time, demedicalizing health problems carries certain risks. American society is rife with dualistic thinking - medical versus social. Raising questions about the nature of health issues raises questions about who will be responsible for them and who will pay for the medical care that they generate. Tensions over personal responsibility for health are likely to escalate as the social costs of health rise. Living and working conditions, which are changing rapidly, will create profound challenges to women’s health. New models must reflect the interconnectedness of working and living conditions, individual health behaviors, and positive biomedical contributions to health. However, society can ill afford to view women’s health predominantly as the domain of biomedicine and ignore the social forces that actually create - and destroy - health.5 1 A social model of health: acknowledges the positive biomedical contributions to health and well being. Yet these contributions do not create the entire health of a community. A social model views health holistically, for there is more to health than the immediate visible treatment of the physical body. Social components of life, i.e. education, employment and environment, contribute to the health o f a community. 79 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Individuals themselves are more than just individuals. They are living are parts of the healthy community at large, i.e. if one individual becomes sick it affects the entire community. A social model argues that there are not scientific explanations for all the ailments plaguing the health of communities. Feminism can be applied in a social model. More inclusive visions of women’s health (WHO), as discussed in Chapter One, emerged from consumer-oriented and feminist women's health movements in the 1970s. Groups such as the Boston Women’s Health Book Collective, the National Black W ’omen’s Health Project, and the National Women’s Health network envision health, and solutions to health problems, from social S2 perspectives.' Feminist conceptualizations of health typically emphasize the ways in which working and living conditions as well as personal health practices create health. The government’s most recent approaches to health in Healthy People 2010 are a move toward this form of conceptualization o f health. Developing more inclusive models of health requires recognizing and dealing with complexities and differences in women’s lives. Educational levels, income, culture, ethnicity, race and a host of other identities and experiences shape women’s health. Living and working conditions themselves are shaped by education, economic trends, housing, and other conditions that produce health and prevent illness. Thus health is created in complex, interactive ways that cannot be reduced to any one dimension. A feminist social model places women at the center of analysis not at the periphery and emphasizes how gender as well as other social roles and rules affect women’s health. A feminist model has not, however, always adequately addressed health issues of women whose life circumstances vary by race, class or a variety o f status 80 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. characteristics, location or identities (as discussed in Chapter Three). Tensions and conflicts have erupted over the centrality o f particular medical services of social policies for various groups o f women. There have also been significant disagreements over what certain biomedical developments, particularly in the areas of manipulative reproductive technologies and genetics, offer or threaten.5j The Black Women’s Health Project, for example, believes there should be a movement away from reproductive health budget allocations toward a budget more inclusive. Certain areas, this group believes, have been severely under-appropriated: AIDS research in African American women and diabetes research is two examples. Despite the actual complexities o f health, its contours have been described quite well in simple, understandable terms. In the introduction to the popular health book Our Body. Ourselves, the Boston Women’s Health Book Collective describes health this way: Though medical care sometimes helps us when we are sick, it does not keep us healthy. To a great extent what makes us healthy or unhealthy is how we are able to live our daily lives — how we eat, we exercise, how must rest we get, how much street we live with, how much we use alcohol, cigarettes or drugs, how safe or hazardous our workplaces are, whether we experience the threat or reality of sexual violence.5 4 Feminist conceptualizations of women’s health such as this one clearly link the source of health to communities, where food, housing, education, and environmental hazards are located. Women, for example, need to be free from all forms of violence. The government only recently has begun to address this prerequisite to health. Violence overshadows the benefits o f new technologies that have positive health influences. The specter of women 81 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. being screened annually for a multitude of diseases but remaining fearful of leaving their homes - or perhaps worse yet, fearing to remain in them - raises uncomfortable questions about how narrowly women’s health has been defined. 6 A RADICAL PLURAL FEMINIST MODEL OF HEALTH fn carefully crafted plural models of women’s health, the health of men, children, parents and life partners take on particular importance. Extending the analysis of health to include significant others in women’s lives in no way dilutes the importance of women’s health in its own right. Rather, it underscores the importance of gender in the production and maintenance o f women’s health. Women from all walks of life emphasize the need to be free from the fear of violence, in all its many sociocultural forms - including violence among men who are women’s kin. Addressing violence against women outside the context of male as well as female gender expectations and opportunities is unimaginable. So is the issue of equality of opportunity, a looming challenge for an increasingly divided society. An inclusive model of health that could mobilize social forces in new ways to contribute to women’s health both as individuals and as members of communities challenges the very core of a biomedical model of health. New questions arise about how to balance resources for biomedicine, for promoting individual health practices, and for improving working and living conditions. 82 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. A radical plural feminist model of health combines social components as well as biomedical components of health and adds a new dimension: diversity. Ruzek argues that health activism needs to apply the radical feminist base o f the 60s while at the time incorporating the notion of difference to health care policy. This difference is not concerned with women as biologically different from men, rather it looks at the notion that women as a group can gain strength from difference without becoming fragmented. They can still struggle for equal access to health as well as providing treatment that recognizes diverse needs.5 5 7 CHAPTER SUMMARY AND CONCLUSIONS Radical feminist heath care activists have opened a dialogue that calls into question many traditional methods and models o f creating health care policies. The challenge is to create inclusive models o f health that contribute to women’s health both as individuals and as members of communities, in their social relations as well as in their bodies. By arguing that women’s health resides in communities, new questions arise about how to balance resources for biomedicine, for promoting individual health practices, and for improving working and living conditions. As a society, Americans face difficult choices about how to allocate resources to improve women’s health. This chapter highlights that the government is beginning to realize that women’s needs shift and change depending upon their race/ethnicity as well as their economic class. Cultural beliefs about what women “need” to maintain or 83 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. improve their health shape health care policies. However, current biomedical models still support excessive investments in medical services without consideration of the underlying social forces that generate health and well being. Without creating and maintaining social relationships and institutions that actually produce health, including economically and culturally viable communities efforts to reduce the burdens of disease and the costs of biomedicine will remain unrealized. The need for thinking critically about women’s health is not new. Over investment in biomedicine, particularly those elements that contribute little to actual improved health outcomes, consumes resources that could be used to extend useful medical care to everyone. Social commitments to education, preserving the environment, spurring economic development, creating safe living and working conditions, and finding new ways to support families and communities are central to an inclusive vision of women’s health. There are no simple formulas for moving beyond narrow biomedical models. A necessary first step is to expand our conceptual understanding of what actually creates women’s health. The next chapter examines the conceptual idea of difference as applied to women’s health as a first step toward a radical plural feminist model for formulating health care policy. 84 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. I See T. Tissue. “Another Look at Self-Related Health Among the Elderly” Journal of Gerontology (27):91-4 1972; El Idler, Y. Benyamini. “Self-Related Health and Mortality: A Review of Twenty-Seven Community Studies” Journal of Health and Social Behavior (38):2l-37, 1997; El Idler. “Self-Ratings of Health: Do They Also Predict Change in Functional Ability?” Journal of Gerontology 50B(6):S344-53, 1995. * U.S. Department of Health and Human Services. Healthy People 2000: National Health Promotion and Disease Prevention Objectives DHHS Publication No. (PHS) 91-50212. 3 Department of Health and Human Services. Healthy People 2010 Development Guide (Washington, D.C.: DHHS 1998). 4 Department of Health and Human Services. Healthy People 2010 Development Guide (Washington, D.C.: DHHS 1998). 5 Department of Health and Human Services. “Budget 1998: An Overview,” (Washington, D.C.: DHHS 1998). 6 Department o f Health and Human Services. Healthy People 2010 Development Guide (Washington, D.C.: DHHS 1998). 7 U.S. Public Health Services. “Policies and Programs,” (Washington, D.C.: PHS 1998). 8 U.S. Public Health Services. “Policies and Programs,” (Washington, D.C.: PHS 1998). 9 U.S. Public Health Services, Office of Women’s Health. “Mission Statement, Goals, and Accomplishments,” (Washington, D C.: PHS 1998). 1 0 U.S. Public Health Services, Office of Women’s Health. “Mission Statement, Goals, and Accomplishments,” (Washington, DC.: PHS 1998). II U.S. Public Health Services, Office of Minority Health. ‘Mission Statement, Goals, and Accomplishments,” (Washington, D.C.:PHS 1998). 1 2 Office of Population Affairs, Department of Health and Human Services. ‘Mission Statement and Goals,” (Washington, D.C.: DHHS, 1998). 1 3 Office of AIDS Policy and Research, Department of Health and Human Services. ‘Mission Statement and Goals,” (Washington, D.C.: DHHS, 1998). 1 4 Agency for Health Care Policy and Research, Department of Health and Human Services. “Mission Statement and Goals,” (Washington, D.C.: DHHS, 1998). 85 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 1 5 Centers for Disease Control and Prevention, Department of Health and Human Services. “Mission Statement and Goals,” (Washington, D.C.: DHHS, 1998). 1 6 Centers for Disease Control and Prevention, Department of Health and Human Services. “Mission Statement and Goals,” (Washington, D.C.: DHHS, 1998). Centers for Disease Control and Prevention, Department of Health and Human Services. ‘Mission Statement and Goals,” (Washington, D.C.: DHHS, 1998). 1 8 The Food and Drug Administration, Department of Health and Human Services. ‘Mission Statement and Goals,” (Washington, D.C.: DHHS, 1998). 1 9 Health Resources and Services Administration, Department of Health and Human Services. “An Overview of Activities,” (Washington, D.C.: DHHS 1998). 2 0 Indian Health Services, Department of Health and Human Services. “Indian Health Services: A History,” (Washington, D.C.: DHHS 1998). 2 1 National Institutes of Health, Department of Health and Human Services. “Healthy People 2000 and Healthy People 2010: An Overview,” (Washington, D.C.: DHHS 1998). 2 2 National Institutes of Health, Department of Health and Human Services. “Healthy People 2000 and Healthy People 2010: An Overview,” (Washington, D.C.: DHHS 1998). 2 3 National Institutes of Health, Department of Health and Human Services. “Healthy People 2000 and Healthy People 2010: An Overview,” (Washington, D.C.: DHHS 1998). 24 National Institutes of Health, Department of Health and Human Services. “Healthy People 2000 and Healthy People 2010: An Overview,” (Washington, D.C.: DHHS 1998). 25 Substance Abuse and Mental Health Administration, An Agency of the Department of Health and Human Services. “Guide to the SAMHA,” (Washington, D.C: HHS, 1998). 2 6 National Institutes of Health, National Center for Health Statistics. Health. United States. 1996. DHHS Publ. No. (PHS) 95-1232. 2 7 Abstract of the United States. 1997. According to the Census Bureau the number of persons living in poverty in the U.S. in 1996 was 36.4 million. Of the 36.4 million, 32.4% were women. 2S See Barbara Ehrenreich. “When Government Gets Mean: Confessions of a Recovering Statist,” The Nation November 1997 6-12. 8 6 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 9 See Proposed Budget for 1997-98 in “National Profile of Women’s Health Status, 1996,” National Center for Health Statistics. Appendix 8. 3 0 The Commonwealth Fund. Prevention and Women’s Health: A Shared Responsibility (New York: The Commonwealth Fund, 1997) 10. 3 1 National Center for Health Statistics, National Institutes of Health, Health Interview Survey 1996. 3 2 Angela Davis. Women. Culture. Politics (New York: Vintage, 1989) p. 55. 3 3 “National Profile of Women’s Health Status, 1984-1994”, National Institute of Health Statistics. 3. 3 4 “Profile of Women’s Health Status in California, 1996. California Department of Health and Human Services, pp. 12-16. 3 5 Davis, Women. Culture and Politics 53. 3 6 Paul Wellstone. “If Poverty is the Question...The answer is not ending welfare as we know it but honestly facing the causes,” The Nation. April 4, 1997, 14-17. 3/ Davis, Women. Culture and Politics 60. 3 8 More than 35 million Americans — one out of every seven o f our fellow citizens — are officially poor. More than one in five American children are poor. And the poor are getting poorer, fn 1994, nearly half of poor children under the age of 6 lived in families with incomes below half the poverty line. That figure doubled over the past twenty years. The number of people who work full time and are still poor has risen dramatically as well, fn 1975, 6 percent of young children who lived in families with one full-time worker were poor. By 1994, that figure had gone up to 15 percent. Minorities are poorer than the rest of Americans: 29.3 percent of African-Americans and 30.3 percent of HIspanics were classified as poor in 1995. Female-headed households are even poorer — 44.6 percent of the children who lived in such families were poor in 1994, and almost half of all children who are poor live in female-headed households. Despite these statistics, the government’s goal is to cut welfare benefits by 20% by the year 2002. Wellstone, c Tf Poverty is the Question,” The Nation 14-17. 3 9 In California, in order to comply with the federal welfare reform law, the Department of Health Services (DHS) filed regulations with the Office of Administrative Law (OAL) to eliminate state-only funded prenatal, postpartum, and certain family planning services to illegal immigrants. These regulations which effects an estimated 70,000 women in California alone took effect July 1, 1997. Report from DHS on Illegal Immigrants and Women’s Health. 87 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 4 0 Ruth Hubbard, Mary Sue Henifin, and Barbara Fried, eds. Biological Woman - The Convenient Myth (Cambridge: Schenkman Publishing Co., 1982) 2. 4 1 “National Profile on the Status of Women’s Health, 1996,” National Institute of Health Statistics. 13. 4 2 Selected Editorial, “Dilating Truth,” The Nation March 31, 1997, 2. 4 3 Nora Kizer Bell. “Women and AIDS: Too Little, Too Late?” in Holmes, Feminist Perspectives in Medical Ethics 51. 4 4 Stephanie Brown, and Lily McNair. “Black Women’s Sexual Sense of Self: Implications for AIDS Prevention.” Womanist Theory and Research. 1995, 1. 4 5 Center for Disease Control and Prevention (CDC), “AIDS Among Racial/Ethnic Minorities - United States, 1993,” Morbidity and Mortality Weekly Report 43(1994):644. 4 6 Fred I. Hellinger, “The Use of Health Services by Women with HIV Infection,” Health Services Research 28f 19931:552. 4/ Kathryn Anastos and Carola Marte, “Women: The Missing Persons in the AIDS Epidemic.” Health/P AC Bulletin. Winter 1989, 10. 4 8 Carol Levine. “W'omen and HIV/AIDS Research: The Barriers to Equity,” Health Policy Review I4(1990):449. 4 9 Bell, “Women and AIDS: Too Little, Too Late?” 53-4. 5 0 Ruzek, et. al. “Social, Biomedical, and Feminist Models of Women’s Health,” 19-21. 5 1 Ruzek, et. al. “Social, Biomedical, and Feminist Models of Women’s Health,” 22. 52 Boston Women’s Health Book Collective. Our Bodies. Ourselves for the New Century (New York: Simon and Schuster, 1998). 5 3 For discussions of these controversies, see especially Lakser and Borg (1994), Rothenberg and Thomson (1994), Rothman (1989), and Stephens and Wagner (1993). 5 4 Boston Women’s Health Book Collective, Introduction. 5 5 Eisenstein, The Female Body and the Law 6. 88 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. CHAPTER IH DIVERSITY IN WOMEN’S HEALTH CARE Women’s actual biological characteristics, health needs, and priorities for health and healing are complex and highly differentiated. Women not only have a longer life expectancy, but they report more symptoms of acute illness, and are more likely to make a physician visit than men. Very little is known, however, about the extent to which women vary by race/ethnicity in patterns of illness and risk factors for ill health. In this chapter, descriptive information is provided on several health indicators and risk factors for ill health. This chapter also addresses the health issues and activities of various diverse communities of women. 1 MEASURES OF HEALTH Health measures (perceived health status, percentage with activity limitations due to chronic conditions, and percentage unable to work due to activity limitations) are indicators of the quality o f life experienced by women. These measures are useful tools of comparison not only between women and men but also women and women to determine health disparities. Data on risk factors like smoking, and being overweight reflect lifestyle behaviors that, while generally described as personal choices, also reflect sociocultural patterns, and financial resources.1 89 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. As stated in the last chapter, self-assessment of health status has been found to correlate well with objective measures of health, including mortality and physician ratings of health. As such it is a good indicator of the extent of health problems in a population. About one in ten women assess their health as fair or poor. This finding varies by race and income (see Chapter Two, figure 2.1). African American and Hispanic women were more likely to consider themselves in fair or poor health than non- Hispanic white persons. Limitation of Activity. One frequently used indicator of a population’s health is the percentage with limitation of major activity due to a chronic condition. Chronic conditions and injuries can have long term health consequences, sometimes resulting in limiting individuals in the performance of their usual activities, such as work, household tasks, or other routine activities. In 1995, 22.5 million Americans 18 to 64 years of age experienced some limitation in normal activities because of a chronic health problem. The conditions responsible for most activity limitation in non-elderly adults include back, spine, and heart disease.2 Figure 3.1, although not gender specific, provides an indication of the link between activity limitation and one’s race and income. In 1992-95 the age adjusted percent reporting activity limitation was slightly higher among African American persons (19 percent) than among white or Hispanic persons (14 percent). However, at each level of income, white persons had the highest rates of activity limitation. At each period and within each race and ethnic group, a larger proportion of poor persons reported activity limitation. In 1992-95 one-third of poor persons, 22 percent of near-poor persons, and 11 percent of middle- and high-income persons had activity limitation. 90 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. fn 1992-95, the income gradient was larger for non-Hispanic black and non- FGspanic white persons than for Hispanic persons; white and black persons in poor families were nearly 3.5 times as likely to be limited as their middle- and high-income counterparts. Poor Hispanic persons were 2.6 times as likely to be limited as those with middle or high incomes were. Between 1984-87 and 1992-95 the prevalence o f activity limitations among poor white persons increased by 17 percent while the prevalence among those with middle and high incomes increased by only 3 percent. Among African American persons increases in the percent with a limitation were similar across income levels (11-15 percent), while among Hispanic persons there was some evidence of an increase in activity limitation for those with no change for those below poverty (see figure 3.1). O f women aged 18 to 64, 13 percent reported limitation of activity due to chronic conditions. Small differences by race/ethnicity are observed, with about 20 percent more African American women (15.6 percent) and about 20 percent fewer Hispanics (10.3 percent) than white Americans (12.9 percent) reporting limitation o f activity. Differences by income are striking. Three times as many low-income women (25.7 percent) as upper-income women (7.9 percent) reported limitation of activity. When stratified by income and race, the effects of race observed among all women persists only for women in the highest income category. Data suggest that lower-income and middle-income racial minority women are as likely as or less likely than their white counterparts to report activity limitations. For example, in the 520,000 to $34,999 income group, about 30 percent fewer Hispanic women (7.7 percent and African Americans 8.4 percent) reported limitation of activity than did white Americans (12.1 percent)3 91 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. .SOURCE: Center for Disease Control and Prevention, NCHS, National Health interview Survey See related Health. United Sines. 1998. table 60. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission Inability to Work due to Activity Limitations. Another measure used to assess health status is the degree to which health problems limit one’s ability to work. Table 3.1 shows the percentage of women who reported they were unable to work due to activity limitations, a subset of those reporting any activity limitation. Health problems limited the working capacity of more African American women than Hispanics or white Americans. The percentage of African Americans who were unable to work is 1.7 times greater than that for white Americans and 1.5 times greater that for Hispanics. The proportion of women unable to work is inversely related to income levels, with nearly one of every seven women (13.9 percent) with incomes below $10,000 unable to work because of their health problems. At the higher spectrum of the income level (more than $35,0000), one of every 45 women was unable to work (2.2 percent) due to health problems. When income and race/ethnic group is considered, there are some differences across racial groups within each income level, but these are modest compared with the differences within a racial/ethnic group by income. For example, among women with incomes below SI0,000, a similar percentage of African Americans and white Americans were unable to work (14.4 and 14.5 percent, respectively). When considering African American women by income, those with incomes under 510,000 were four times more likely to be unable to work than those with incomes about $35,000. Among white American women, those in the lowest income group were close to seven times more likely to be unable to work due to health problems than women in the highest income group were. In general, a lower percentage of Hispanic women than both African American and white American women were unable to work. However, differences by 93 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Table 3.1 Health Status Measures by race/ethnfcity and family incomes^ women aged 18 to 64(weighted)» 1995 Ratio Health Status measure/family income African American Bispanic American White American AA:WA LA:WA Fair or poor health. % All income groups 17.2 13 8.5 2.02 1.53 Under S10.000 29.5 24.4 21 1.4 1.16 510,000-19.999 18 16.7 12.7 1.42 1.31 S20.000-34.999 9.2 9.6 7.5 1.23 1.28 S3 5,000 7.8 5 4.2 1.86 1.19 Any activity limitation. % All income groups 15.6 10.3 125) 1.21 0.8 Under SIO.OOO 24.6 20.2 27.6 0.89 0.73 SI 0,000-19.999 17.8 9.7 18 1.0 0.54 S20.000-34.999 8.4 7.7 12.1 0.69 0.64 S3 5,000i 8.9 5 8.2 1.09 0.61 Unable to work due to activity limitations. °/o All income groups 8.2 5.3 4.8 1.71 1.1 Under SIO.OOO 14.4 12.1 14.5 0.99 0.83 Sl0.000-19.999 9 3 4.9 7.1 1J1 0.69 S20.000-34.999 3.4 3.6 3.8 0.89 0.95 S35.000 < - 3.6 l.l 23. 1.64 0.5 Source: analysis of data from the 1995 Health Interview Survey income are more striking. Hispanics in the lowest income level were 11 times more likely to be unable to work than were those in the highest income level.4 Lifestyle Behaviors. The health profiles of racial/ethnic minority women often include characteristics of risk factors that are known to be associated with specific states of ill health and are modifiable. Four common risk factors — overweight, hypertension, high cholesterol, and smoking. Overweight adults are at increased risk for hypertension, Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. heart disease, diabetes and some types of cancer. Between 1971-74 and 1976-80 the prevalence o f overweight among U.S. adult women 25-74 years of age remained nearly constant at around 29 percent. By 1988-94, however, 39 percent of women in this age range were overweight, an increase of 33 percent. Between 1971-74 and 1976-80 the prevalence of overweight was stable for women with less than 12 years of education and increased most among women with higher levels o f education. Between 1976-80 and 1988-94 overweight increased among women at all levels of education. The increases were greatest for women with 13-15 years o f education. Among women, overweight prevalence declined as education increased. In 1971- 74, overweight prevalence among women with less than 12 years of education was nearly 2.5 times the prevalence among those with 16 or more years. By 1988-94 overweight prevalence among women with less, than 12 years of education was only 1.7 times as high as the prevalence among college graduates between 1971-74 and 1988-94 (see figure 3.2). The Healthy People 2000 goal is for no more than 20 percent of adults, 20-74 years of age to be overweight; the target for Iow-income women is 25 percent.5 During 1988-94, approximately one-third o f adults in the United States was overweight. The prevalence o f overweight was similar for men and women, except for persons living below the poverty line. Among the poor, 46 percent of women and 31 percent of men were overweight. There was a clear income gradient in overweight prevalence among women, with overweight prevalence for poor women 1.4 times that of women with middle incomes and 1.6 times that for women with high incomes. 95 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. N O TE: PcruenLs a re a g e adjusted and p lotted on a tog scale 1971^4 L21976-SO i H988 # 4 SOURCE: Centers for Disease Control and Prevention. NCHS, National Health And Nutrition Examination Surveys. See related Health United States. 1998. table 70. For Mexican American and non-Hispanic white women, there was an income- related gradient in the prevalence of overweight, In 1988-94, 42 percent of poor white women were overweight, 1.4 times the proportion overweight among middle- or high- income white women. Among Mexican American women, overweight prevalence for those in poverty was 1.2 times that for those with middle or high incomes. Among African American women, however, the prevalence of overweight did not vary much across the income categories (see figure 3.3).6 Hypertension is a risk factor for heart disease and stroke, and the first and leading causes of death in the United States. In 1988-94 hypertension affected nearly one in four U.S. adults 20 years of age and over, 23 percent o f women. 17 percent of women had uncontrolled high blood pressure while 28 percent of hypertensive women were controlling their blood pressure with medication. The Healthy People 2000 goal is for 50 percent of hypertensives to be controlling their hypertension.7 96 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. SOURCE: Centers tor Disease Control and Prevention. N O IS. National Health and Nutrition Examination Survey. See related Health United States. 1998. table 70. There was a clear income-related gradient in hypertension among women. The prevalence of hypertension ranged from 31 percent for poor women to 19 percent of high-income women and poor women were 1.8 times as likely as high-income women to have uncontrolled hypertension. The income-associated prevalence of hypertension for all women masks considerable differences across race and ethnic groups. In 1988-94 total hypertension prevalence and uncontrolled hypertension declined as income increased for white and African American women. Forty percent of poor African American women had hypertension, compared with 30 percent of middle- and high-income women. Among white women the prevalence of hypertension ranged for 30 percent for those in poverty to 97 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 20 percent for those with middle or high incomes. Among Mexican American women there was no association between income and hypertension (see figure 3.4).8 NOTE: Percent arc age-adjusted. SOURCE: Centers for Disease Control and Prevention, NCHS. Third National Health and Nutrition Examination Survey. See related Health Uniipr1 St 1998 table 68. Heavy and chronic alcohol use has numerous harmful effects on the body. For example, alcohol use and abuse can cause cirrhosis, poor pregnancy outcomes, and motor vehicle crashes. The relationship between socioeconomic status and alcohol differs for moderate and heavy use of alcohol. Heavy drinking decreases with more education, whereas moderate alcohol use increases with educational level. The relationship between education and heavy drinking in the past month differed by race, ethnicity, and gender. In 1994-96 African American women with less than a high school education were almost twice as likely to report heavy alcohol use in the past month as those with more than a high school education. White women with less than a high school degree were 40 percent more likely to report heavy drinking than women 98 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. with more education were. Heavy drinking in the past month did not differ by education among Hispanic women. Another measure of heavy alcohol use, drinking five or more drinks on five or more occasions in the past month, shows an even stronger inverse relationship with educational attainment. In 1994-96, 7 percent of persons, 25-49 years reported this measure of heavy alcohol use. Those with less than a high school education were 2.7 times as likely to report frequent heavy alcohol use during the past month as college students were. Except for Hispanic women, all race, ethnicity, and gender groups showed a strong inverse relationship between education and frequent heavy alcohol use (see figure 3.5).9 NOTE: Heavy alcohol use during the past month is defined as drinking Gve Or more drinks on the same occasion at least once in the past month. SOURCE: Substance Abuse and Mental Health Services Administration, Office o f Applied Studies, National Household Survey on Drug Abuse. 199-1-96. 99 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Smoking is the leading cause of preventable death and disease in the United States. Smoking leads to an increased risk for heart disease, lung cancer, emphysema, and other respiratory diseases. Each year approximately 400,000 deaths in the United States are attributed to smoking and smoking results annually in more than S50 billion in direct medical costs. Although there have been recent declines in the prevalence of smoking, the public health burden of smoking-related illness is expected to continue over the next several decades. Between 1974 and 1990, cigarette smoking in the U.S. declined substantially for persons 25 years of age and over. Among women, smoking declined from 32 percent to 23 percent. Between 1990 and 1995, however, there was little change in smoking prevalence; in 1995 the age adjusted smoking prevalence was 23 percent of women. Between 1974 and 1990, cigarette smoking declined at all levels of education for both men and women. The rate of decline, however, was greater among persons with more education. Average annual declines ranged from 0.9 to 2.2 percent for women with less than a college degree. Among college graduates, cigarette smoking declined by approximately 4 percent per year for women. Between 1990 and 1995, the rate of declined in smoking prevalence was considerably less than occurred during 1974 to 1990. In addition, declines showed no education-related gradient. For women at all levels o f education, the age-adjusted prevalence of smoking in 1995 was nearly the same as in 1990. Differential declines across education groups have produced a widening in the socioeconomic gradient in smoking prevalence. In 1974, the least educated women were 100 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 1.4 times as likely to smoke as women with 16 or more years of education; by 1995 they were 2.4 times as likely to smoke (see figure 3.6). SOURCE: Centers for Disease Control and Prevention, N'CEIS, National Health Interview Survey. Sec related Health United States. 1998. table 63. In 1995 approximately one out of every four U.S. residents 18 years of age and over was a current cigarette smoker. However, the percent currently smoking decreased as family income increased. For men and women, cigarette smoking was about twice as common among poor persons as among high-income persons. The Healthy People 2000 goal is to reduce smoking prevalence to no more than 15 percent among persons 18 years of age and older.1 0 Non-Hispanic white and African American persons living below poverty were more likely to smoke than persons with higher incomes were. Poor African American men and women were twice as likely to smoke as those with middle and high incomes; 101 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. for white men and women, the ratio was 1.7. There appeared to be less of an income gradient in smoking prevalence among Hispanic persons. Non-Hispanic white women were more likely to smoke than African American women regardless o f income were. Hispanic women in or near poverty were less likely to smoke than their non-Hispanic white or African American counterparts (see figure 3.7).1 1 .pyeiv SOURCE: Centers for Disease Control and Prevention, NCHS. National Health Interview Survey. 2 DYNAMICS OF COMMONALITY AND DIFFERENCE A plural approach to women’s health challenges the basic assumption that people have shared situations. It affirms the idea that difference is essential in understanding women’s health. However, it is risky in that in order to address needs “experts” are not at 102 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. the center of debate — rather affected individuals are the primary voices.1 2 The debate expands as the vantagepoints broaden. A . prevailing ideology during the early years of the women’s health movement was that health concerns were so fundamental to women that they cut across race and class lines. Thus, health today is seen as a powerful link that can serve to unite women, all women, into a strong, unified social movement. Whereas many social institutions might divide women, feminism will unite them around health issues because of perceived commonalties surrounding health and health care. However appealing on the surface, this ideology overlooks the critical importance of race and class as sources of different and varied health problems and as sources of dissatisfaction with health and health care in American society. Moreover, this ideology glosses over the wide array of women’s own perceived priorities for social action that are grounded in very different objective and subjective life experiences.1 3 One consequence of assumed commonalties is to alienate women of color. Lorde was one of the first to point out that “there is a pretense to a homogeneity of experience covered by the word sisterhood that does not in fact exist.”1 4 Unlike middle-class, white feminists, women o f color clearly recognize that the dynamics of race and class as well as gender affect every aspect of their lives, and to this day they are not convinced that gender is as salient as race or class. From the perspectives of women of color, a feminist ideology of commonalties seems not only naive and incomplete but especially in the area of health, dangerously so. Many more low-income women than men, especially the uninsured, for example, desperately seek access to hospitals, and doctors (see figure 3.8). 103 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Critiques of this monolithic view of gender and health in feminism are important to address. African American scholar bel hooks, one of the first to argue about the importance of both sexism and racism, cogently highlights dilemmas inherent in feminism for women of color. White feminism was predicated on the perception of shared victimization by men in the family, in the workplace, and in health care. For African American women, race and class oppression was far more salient in daily life, and identifying with white women as “victims” strained credulity. Ironically, the women who were most eager to be seen as victims, who overwhelmingly stressed the role of victim, were more privileged and powerful than the vast majority of women in our society.1 5 104 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Although many middle-class white women did see themselves as disadvantaged in relation to men (in their social class) and found support in feminist networks, women of color saw their situations differently — and they found support within their own communities. For example, Chow emphasizes that Asian American women’s relative lack of participation in mainstream feminist activities cannot be understood through white women’s eyes, it must be understood in terms of Asian American women’s own race, class, and cultural experiences. 1 6 Whereas African American women may derive strength to survive difficult working and living conditions from extended community networks, Asian American women’s support and strength comes from the family. 1 7 Women of Hispanic origins also had these commitments to family roles.1 8 Early on in the academy and in the small amount of federally sponsored research on women’s health that was funded, when women o f color were nominally included, the diversity of women’s experiences and life situations were largely ignored.1 9 Examples of mistreatment of women in research abound. There has been testing of oral contraception on Puerto Rican women. There has been Mississippi appendectomies (tubes tied or uteri removed without consent or knowledge) and cliterectomies performed on poor women up through 1937 and then again in 1949. Historians also document the sterilization of disabled women without knowledge and the experimentation of Norplant on welfare recipients.2 0 With the above exploitation in the name of health, and the limited involvement of women of color in mainstream feminism, and the patterned ways in which dominant groups generalize their own experience to others unless directly challenged, it is predictable that a generalized white, middle class concept of women’s health emerged. 105 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Much early feminist health research focused on sex differences in health and health-seeking behavior,2 1 a focus that did not resonate well with many women of color. Differences between women were rendered invisible as researchers focused on differences between women and men. Research that directly addressed race and class largely focused on institutional stratification, particularly in health occupations.2 2 Although increased interest in women’s health opened up new areas of inquiry, it did not initially further understanding of women’s diverse experiences of health and illness that were grounded in differential experiences such as disabilities. Nor did feminist analyses (with a few' exceptions) address variations in the treatment of women in health and healing systems. To understand women’s differences of experience, one can examine how concepts o f differences emerged historically out of conflict over unexamined assumptions about commonalties. During the 1970s and 1980s, a period in which health activism coalesced around women’s issues, many largely white feminist groups (NOW, Women’s Health Project, National Women’s Health Lobby, Coalition for Medical Rights of Women, Women and Health Roundtable) were aware that few women of color joined movements. Some groups (NOW in particular) anguished over the lack of women of color in their organizations, and they made efforts to reach out and encourage their participation.2 3 The Boston Women’s Health Book Collective in revising its Our Body. Ourselves, had recruitment programs in 1996 and 1997 for women of color with relatively little success.2 4 It was difficult for many groups to come to terms with the fact that for most women of color, who were actively involved in organizations within their own communities (NWACP, La Raza, Native American Women’s Coalition, Women 106 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. with Disabilities, etc.) joining a largely white feminist group was likely a priority. Collins points out: African Americans are deeply committed to working in their own communities, and this work brings an array of personal rewards and satisfactions. Nonetheless, many feminist health organizations actively attempted to recruit individual women o f color into largely white feminist organizations, usually with minimal success. The intentions of feminist groups notwithstanding, one can still ask why would many women of color choose to join groups in which they were likely to feel like “tokens,” or “used,” when they could be part of a civil rights or church or community group that worked directly for the empowerment of their own communities?2 5 The situation was even more tenuous, as feminist author bel hooks argues, because women of color who did align themselves with feminist groups sometimes feared that their participation could alienate them from their own communities. Feminism was seen largely as a privileged white woman’s movement, unlikely to benefit and harmful to communities of color. Additionally, the individualistic orientation of feminism and the negativity that was widely expressed toward men and children, conflicted directly with the family and community that many women of color valued.2 6 As women of color themselves organized around health and reproductive rights issues during the 1980s (National Black Women’s Health Project, Hispanics in Crisis, etc.), coalition and partnership building between specific women of color organizations and feminist groups became possible. Working relationships between women of color organizations and established groups require dealing with long-standing tensions. 107 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. In each of the following sub-sections specific health issues of various communities of women is examined. It is critical to recognize that as various communities organize and mobilize positive changes have occurred. 3 HEALTH ISSUES.CONCERNS AND ACTIONS OF WOMEN OF COLOR Women of color define women’s health issues both from the perspective of their specific racial /ethnic group and also increasingly as members of women o f color coalitions that share some common interests and causes. Thus, women of color define their own health issues both through organizations founded specifically to address the needs of particular racial/ethnic groups and through coalitions focusing on the needs of women of color. The reasons for forming separate coalitions to create public policy abound. AFRICAN AMERICAN WOMEN African American women have a long history in this country of health abuse. They have been subjected to: forced ^ ■ “ 7 * 7 0 sterilization , coerced experimentation , high rates of cesareans , lack of adequate funding and research in areas that affect the African American community at large: AIDS, Cancer, Heart Disease.3 0 Black women are used to tragedy. We expect it. Death is not a stranger to our lives, to our worlds. We’ve lost our fathers to hypertension and heart attacks, our brothers to frontline battles in American wars, our husbands and lovers to black on black crime or police brutality, and our sons to 108 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. drug-laced streets or upstate prisons. All this while grappling with the stress and burden of all that is black life in America: babies bom to babies, dehumanizing ghettos, inferior schools, lower wages, on-the-job racism...the slow but steady death of our people. We are just used to pain.3 1 There are high percentages of under educated poor women among African Americans which is directly related to significant health problems in the community. In 1996, the disparity between the median household incomes of men and women at the same level o f education was greatest for African Americans; median income for men exceeded that for women by 52 percent for persons with less than a high school education, and by 16 percent for college graduates (see figures 3.9, 3.10, and 3.1L ). $ 40, 000 -$30,000: $20, 000 S32> 030 $30,270 eM eh $10 ,000- 109 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. NOTE: All figures refer to persons. “All children under 18 years o f age- includes Unrelated children. “Female-headed households” above are families with female Householder and no spouse present. SOURCE: U.S. Census Bureau. “ Detailed Poverty Tables. Table 2” Last revised October 3, 1997. SOURCE: U.S. Bureau o f Census. Current Population Survey March 1997. fn the national Healthy People 2000 plan, because of significant differences found between African American and white health status, different goals were established for 110 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. “special high-risk populations”. The establishment o f these different objectives was an attempt to “narrow the gap between the total population and those special population groups that experience above average incidence of death, disease, and disability.”3 2 African American women have created strong coalitions to work on community organizing for better health and than approaching policymakers on a national level. In recent years, the National Black Women’s Health Project (NBWHP) has actively provided leadership for setting priorities and health agendas and community based services for African American women. The NBWHP has also been the primary legal advocate for African American women who do not have the resources to fight health care abuse. Its landmark accomplishment was a 1996 case where the NBWHP argued that the court should not be able to mandate sterilization or contraception for welfare women who have been convicted for drug abuse. For now the law can offer the woman choices of punishment.3 3 NATIVE AMERICAN WOMEN Native American women, though relatively small in numbers, have significant health problems that are rarely if ever addressed. Poverty, compounded by racism and sexism, cause this group to be virtually ignored by the government and even worse yet women’s groups. The current Health. United States. 1998. barely mentions Native Americans, more specifically Native American women. Yet, Native women have always been part of the struggle for women’s liberation. If a million Native Americans reside below national consciousness in the health care debate, certainly that fifty-or-so percent of them that are female are all the more nonentities.3 4 To put the health of Native Americans in perspective, it is important to take an overall look at the socioeconomic status and general health status of Native Americans in 111 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. general. As a group, Native Americans are more likely to be poor, unemployed, and undereducated than other U.S. populations. - According to the 1990 Census, 65.3 percent of American Indians age 25 and older residing in the current Reservation States are high school graduates or higher, compared with 75.2 percent for the U.S. All Races population. For bachelor’s degree or higher, these percentages are 8.9 and 20.3 respectively; (regarding education, see figure 3.12) - Native Americans suffer from unemployment and underemployment; (regarding unemployment and income, see figures 3.13 and 3.14) - Native Americans have a high birthrate, a high infant mortality rate, and short life expectancy (regarding life expectancy see figure 3.15). Of the 10 leading causes of death for Native Americans, six are above the national average. Four of these are related to sociocultural stress factors: accidents, cirrhosis, homicide, and suicide.35 (regarding mortality see figures 3.16, and Table 3.2) 1990 80 40 EI^unencaglniBans 20 Note: According to the 1990 Census. 65.3 percent of Indians age 25 and older residing in the current Reservation States arc high school graduates or higher, compared with 75.2 percent for the U.S. AH Races population. For bachelor’s degree or higher, these percentages are 8.9 and 20.3, respectively. Source: U.S. Department of Commerce, Bureau of Census, 1990 112 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. NOTE: In 1990, 16.2 percent of Indian males age 16 and older residing in the Reservation States were unemployed, compared with 6.4 percent for the U.S. All Races male population. For females, these percentages were 13.4 and6.2, respectively. Source: U.S. Department of Commerce. Bureau of Census. 1990 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Cl^iiD^rciairln^idiK^ 1 0 ] .S o im e r J J S . 114 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 75259 Note: Life expectancy at birth for American Indians and Alaska Natives in 1972 -1974 was nearly 8 years less than the life expectancy of the U.S. All Races and White populations in 1973. For 1991-1993 versus L992, the gap with U.S. All Races population has narrowed to 2.6 years and with the White population to 3.3 years Source: U.S. Department of Commerce, Bureau of Census, 1990 Table 3.2 Leading causes of death and numbers of deaths of Native American women: United States, 1996_____ 1 Diseases of the heart 999 2 Malignant neoplasms 888 3 Unintentional injuries 410 4 Diabetes 311 5 Cerebrovascular diseases 294 SOURCE: Cento'S for Disease Control and Prevention, NCHS, Monthly Vital Statistics. “Final Mortality Statistics, L996. The federal sponsored Indian Health Services program operates in a symptom- oriented fashion. As it relates to women, the major preventive effort has been in the area of birth control and family planning. In impoverished environments, infant mortality is 115 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. extremely high. Among some of the Northern Pueblo groups and elsewhere, prenatal clinics are held sporadically and with a minimum of success. This is the fault of both lack of funds and lack of commitment on the part of Indian Health Services and the general lack of information available to potential users about such programs.3 6 It is perhaps useful to state the federal guidelines concerning the health of Native Americans. The first mention of health care as a part of the trust responsibility o f the federal government came in 1836 in a treaty with the Ottawa and Chippewa (Ojibwe) nations. In exchange for giving up land, Native Americans were granted annual payments for vaccines, medicines, and services of physicians — provided, of course, that they stayed on their reservations and did not bother the white settlers. Since that time, similar clauses have been included in treaties and statutes until health care has become a clearly established right in the eyes of Native Americans. Furthermore, as stated above, Native Americans have their own federally financed and administered health care provider, the U.S. Indian Health Service. Other U.S. citizens, even those entitled to Medicaid or similar programs, do not go to a federal facility to get care. Instead, the government helps them pay for care mostly at private community facilities. The only other federally run health service is for the military and its related agencies. Health care for Native Americans is not linked to employment (as is the case for most private health insurance programs). It is not linked to disability (as is the case for Medicare or government funded programs), and it is not linked to past military service (as is the case with the Veterans Administration program). It is simply a right due to Native Americans. Yet, Native Americans’ health status, especially that of women, continues to lag behind that of other Americans. Most differences as indicated 116 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. above can be attributed to sociocultural stress and access to care that the government has not efficiently addressed.3' In addition the budget for Indian Health Services has been reduced significantly in recent years. Coalition building among native women has been difficult. Some groups like WARN (Women of All Red Nations) founded in 1974, however, have worked to communicate the ways in which native women’s health perspectives and needs stand in sharp contrast to those of dominant groups.3 8 WARN represents Native women at national conferences and works with other women’s organizations on policies important to minority women. WARN”s main goals are to improve educational opportunities, health care, and reproductive rights for American Indian women.3 9 Other groups like the Native American Women’s Health Education Resource Center in Lake Andes, South Dakota discussed in Chapter One, started as a regional community-based health project offering various health programs. It now reaches out to Native American women in the U.S. and Canada with information on a wide array of issues ranging from toxic waste to racism. In 1990, the Native Women’s Reproductive Rights Coalition, comprised of women from over eleven Northern Plains nations, issued an agenda for Reproductive Rights for Native American women.4 0 The Indigenous Women’s Health Network, the only Native American women’s organization in the Ford Foundation survey reported program areas in health, teen pregnancy, reproductive rights, and domestic violence.4 1 On a positive note, data on Healthy People 2000 subobjectives for Native American populations in general indicate that 17 are progressing towards the year 2000 targets. In 1992, the prevalence of smokeless tobacco use among Native Americans 117 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. dropped 7.3 percent, surpassing the years 2000 target of 10 percent. Motor vehicle crash deaths dropped from the 1987 baseline of 37.7 per 100,000 to 32 per 100,000 in 1992 and met the year 2000 target. Unintentional injury deaths and suicide also decline, but remain at levels higher than the total population. Health objectives for Native women that have not been met overweight prevalence, diabetes prevalence and cirrhosis deaths exemplify the serious health problems of this population.4 2 HISPANIC WOMEN’S FfEALTH The U.S. Census Bureau estimates that by the year 2010 Hispanics (includes Hispanics or Spanish-sumamed or Spanish-speaking residents of the U.S.) will comprise 13 percent of the U.S. population. In 1994, 26.4 million Hispanic Americans were living in the continental United States: 64 percent were Mexican Americans, 11 percent were Puerto Ricans, 13 percent were from Central and South American and the Caribbean, 5 percent were Cuban Americans, and 7 percent were classified as “Other” Hispanic. The Hispanic population has high rates of poverty and unemployment (see figures 3.17 and 3.18) and has to a great extent relied on government programs for their health.4 3 Of 82 Healthy People 2000 objectives with regularly updated data, about half have data indicating progress - in other words a decrease in health disparity between Hispanics and the total population. Ten percent of the Hispanic objectives show no reduction in disparity. For 22 percent of the Hispanic objectives, data are moving away from the target and for 21 percent there are no data to assess progress.44 New immigrant women living in the U.S. have the highest percentage of forced sterilization and unwanted experimentation of any category of women.4 5 An example is a 1993 case pending in California, Madrigal v. Ouilligan.4 6 In Madrigal, ten Chicanas who 118 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. spoke little or no English were pressured by non-Spanish speaking medical personnel at Los Angeles County/USC Medical center into consenting to tubal ligations. AJl of the women had gone to the county hospital to deliver a child, and all needed a cesarean section. Eight of the women were approached while in labor about becoming sterilized; some were intimidated by false threats of death from a future pregnancy; and some were also hemorrhaging, or were heavily medicated, or had been at least partially anesthetized when pressured into consenting to a tubal ligation. Two women were never asked for their consent at all. Instead, the husband of one and the man with whom the other was living were approached for their consent with misrepresentations that the two women would die from another pregnancy. SOURCE: U.S. Census Bureau, 1990 Census 119 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. UnitcdStates,!996 ^ c h lk tn n i^& -l& jyeatsa£ige; ' R d a ic d c iiltfrK n im derittycroSfr ^a^^f5o^^(»<fc^haasdibKs3: ^4*fe^r©3 5=^ K a>T 'gfiO O ' Source: U.S. Department o f Commerce, Bureau of Census. L990 The women were not affected by federal regulations that apply only to federally assisted sterilization. These women were either sterilized at their own expense or at county expense. The Madrigal women were without state protection as California has repealed the application of regulations to non-Medicaid patients. Sterilization rates as high as 65 percent for Hispanics have been reported in some areas of the United States. New York Hispanics have a sterilization rate seven times higher than white women and almost twice that of African American women.4 7 We are subtly and sometimes overtly coerced into believing that sterilization is the only alternative to the inferior, degrading reproductive health care we receive. This deception often denies us access to safe and effective contraception or abortion. Sometimes a woman must agree to sterilization in order to receive an abortion. We are sterilized by doctors who regard excessive childbearing by poor women and women of color as deviant or inappropriate. Some public hospitals have two films they show to women seeking contraceptive information: the English-language film emphasizes conventional 120 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. contraceptive methods, the Spanish-Ianguage film stress sterilization.4 8 In the Ford Foundation survey discussed throughout this study, three Hispanic women’s groups (the National Hispanic Health Organization, Comision Femenil Mexicana Nacional, Inc.,4 9 and the National Hispanics Caucus, Inc.5 0 ) reported health- related programs in the areas of teen pregnancy, reproductive rights, general health, and domestic violence.5 1 Regarding reproductive rights, these Hispanic groups have stated that: Reproductive choice encompasses access to quality health care, information, and education about sexuality that is culturally relevant and in our language, and birth control that is affordable. It includes having early prenatal care so we can have healthy babies. It means freedom from reproductive abuses and being able to make knowledgeable healthful choices so that we are not left with abortion as our only choice.5 2 The medical system, unfortunately, equates the reproductive health of women of color with the limitation of pregnancies. Little or no attention is given to fertility problems. Prenatal screening procedures, such as sonograms or amniocentesis, are equally unavailable. At the local or regional level, Hispanic health organizing and advocacy reflects a mobilization against these abuses. The National Hispanic Health Organization (NLHO) discussed in Chapter One, is committed to bilingual access to quality health care and self empowerment through educational programs, outreach, and research. The NLHO distributes information nationally on reproductive health and locally offers prenatal and other health education classes in Spanish. In 1994, the organization took a stand against 121 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. a state ballot measure that would establish a single payer health system on the grounds that the plan would exclude illegal immigrants, most of who are from Latin America.5 3 Health activism for Hispanics is often embedded in organizations that serve the entire Latino community. In the Philadelphia area, for example, the Latino Health Issues Forum addresses issues that are specific to particular groups. Task Forces also work on issues for Latinos with particular characteristics — disabled persons, sexual minorities, women, and men. Within Latino/Hispanic communities, the differences that are significant factors in health are recognized as warranting direct attention. On September 1996, the Secretary of Health and Human Services, Donna Shalala, announced a Department-wide Hispanic Agenda for Action: Improving the Services to Hispanic Americans Initiative. The primary focus of this initiative is to ensure that the workforce and programs o f the Department of Health and Human Services are reflective of and sensitive to its Hispanic customers. In addition, the National Center for Health Statistics began to translate National Health Interview Surveys into Spanish. Finally, local health departments around the country are working with the National Center for Farmworkers Health to improve the collection and utilization of demographic and epidemiological information throughout the U.S.-Mexico border area.5 4 ASIAN AND PACIFIC ISLANDER WOMEN Asian and Pacific Islander women and men comprise exceedingly diverse communities (see Table 3.3). Overall, women in this group have excellent health status - better than that of whites which quite possible is related to education and income (figures 3.19 and 3.20). Nationally, Asian/Pacific Americans have the highest median household income ($43,276) compared with whites (538,787), Latinos (524,906) and African Americans (523,482).5 5 122 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. These figures obscure complexities. Many Asian/Pacific Islanders have large households with many more workers (in some cases several families) contributing to a single household income. Consequently, the amount of money available for each individual is reduced. The per capita income for Asian/Pacific Americans in Los Angeles County illustrates this: the Asian/Pacific American household income exceeded the white household income by about S450, but per capita Asian/Pacific Americans made only seventy-one cents for every dollar a white American made.5 6 Table 3.3. Asian/Pacific Islander Population Total 7,273,662 Chinese 1,645,472 Filipino 1,406,770 Japanese 847,562 Asian Indian 815,447 Korean 798,849 Vietnamese 614,547 Hawaiian 211,014 Samoan 62,964 Guamanian 49,345 Other 821,692 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. NOTES: AII figures refer to persons. “All children under 18 years of age” Includes unrelated children. “Female-headed households” above are families With female householder and no spouse present. SOURCE: U.S. Census Bureau. “Detailed Poverty Tables, Table 2. Last revised October 3, 1997. 124 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Newer immigrant groups do not uniformly share favorable health status, nor do they find health services compatible with their traditional values and belief and belief systems.' The sheer diversity o f these groups makes generalizing impossible. In 1996, the Census Bureau estimated that 60.7 percent of Asian Americans and Pacific Islanders are foreign-born. This may impose significant cultural and linguistic barriers to access to health care and use of preventive services. By the year 2010, the Asian American and Pacific Islander population in the United States will have increased by more than 100 percent, making it the fastest growing minority group over the last two decades and into the millennium.5 8 Asian/Pacific Islander women are second only to Hispanics in numbers of people who are uninsured. Some 36 percent of Asian/Pacific Islander women under age 65 have no health insurance as compared to 16 percent of the U.S. population under age 65.5 9 Asian/Pacific Islanders are well represented in the health professions, so in large urban areas culturally appropriate providers may be available for certain populations. In San Francisco, where there are large, well-established Asian American as well as immigrant populations, there are numerous clinical services that specifically serve these communities. Existing data, however, indicate that Asian/Pacific Islander women do not in fact, consider certain women’s health services important. For example, in a study conducted by the Vietnamese Community Health Promotion Project in San Francisco in 1997, 45% of Chinese and 51% of Vietnamese women had never received a Pap smear. Forty seven percent of Vietnamese women had never had a breast exam.6 0 125 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. In addition, most Asian women do not perceive themselves to be at risk for health problems. Traditionally women have acted as the primary caregiver for family and community health, limiting their time and energies to make their own individual well being a priority. Yet, more damaging to women have been power public misperceptions of Asian Americans as the “model minority'’ who face no health problems whatsoever. The stereotype of the “model minority” myth, which perpetuates the impression that all Asian Americans are prosperous and educated, has limited the implementation and formulation of public health intervention programs targeted to this population. This stereotype simply is not true for many Asians in the United States, and has masked the enduring barriers and problems that Asian American women encounter in accessing health care.6 1 Consider breast cancer where there is a pervasive myth that Asian women are not at-risk. This has been exacerbated by health data that combine all Asian ethnic groups together, hiding any variances between different groups. In 1996, for example, approximately 4 percent of Asian Americans lived in poverty, but when broken down by ethnic group, the rates range from 65% of Hmong living in poverty to less than 10% for Japanese Americans. Ethnic breakdowns for breast and cervical cancer incidence rates have become widely published only in the last few years. There is a varied rate of breast and cervical cancer incidences among Asian/Pacific Islander women. For example, Hawaiian women have the highest incidence of breast cancer and mortality rates of any ethnic/racial group in the country: an incidence rate of 111 per 100,000 and a mortality rate of 33.3 per 100,000 6 2 126 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. For cervical cancer, Vietnamese women have the highest incidence rate of 43 per 100,000. This is seven times the rate of Japanese women (5.8 per 100,000), and more than twice the rate of Hispanic women which is the second highest for all racial groups at 16.2 per 100,000. Cervical cancer is the leading incidence site for Vietnamese women, a significant variation from other racial and ethnic groups where it is not even among the top three. Even though breast and cervical cancer incidences and mortality are lower overall for Asian American women, the disease burden in this population is not inconsequential. Furthermore, the assumption that Asian American women are not at risk for this disease contributes to diagnosis at stages with poorer prognosis.6 3 Organizations (the National Asian Women’s Health Organization discussed in Chapter One) have begun to work with federal and state government to address the health issues, like cancer of Asian American women. Immediate goals are to represent Asian American women and families in the expansion of Healthy People 2000 in Healthy People 2010 to make sure that there is safe and adequate health choices and options for this community. NAWHO is working with lawmakers and government agencies to close the gaps in health care education. 4 OLDER WOMEN In addition to the previous discussed categories of women, it is important to focus on one additional category that includes women from all classes and cultures: mid- Iife/older women. America is growing older, and most older Americans are women. At 127 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. the turn of the century, fewer than 1 in 20 people reached 65 years of age. Today 1 in 8 is over age 65, and by the year 2030 that number will approach 1 in 5. The fastest growing segment is the 85+- age group. Women constitute the majority of this population, and that trend is accelerating. While both women and men are living longer, women’s life expectancy is 7 years longer than that of men. A woman born in 1998 can expect to live to age 79, a 30-year increase since 1900. But while she can now expect to live much longer, those bonus years may not be better years. Medicine and research have not taken a health promotion and disease prevention orientation. Much of the aging research that exists has focused on men, in spite of the fact that most of the participants in the “graying o f America” are women. Adding to this problem is an even greater lack of focus on such groups as older women of color. One important gender difference is that older women suffer from greater disability and poorer health outcomes than do older men (see figure 3.21). d Lsabliitles- increases 50 SOURCE: U.S. Census Bureau. 1990 Census. 128 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Because of their longer lives, greater numbers, and higher incidence of chronic disease, older women use more health services and generate significant health care costs. Therefore, more attention to healthy aging and better meeting the health care needs of older women would contribute greatly to improving the Nation’s health and reducing unnecessary health care costs.6 4 Poverty. The quality of older women’s lives often diminishes as they age, and poverty plays a major role. Nearly three-fourths of the Nation’s elderly poor are women. Older minority women and those living alone suffer disproportionately. The longer women live, the poorer they become due to such factors as death of a spouse, limited fixed incomes, and higher costs of living including out-of-pocket health care costs. There are multiple reasons of older women’s higher rates of poverty, and they are rooted in our society’s traditional system of paid and unpaid labor. Many women are uncompensated as homemakers and caregivers for at least part of their lives. They have a harder time getting work outside the home due to hiring discrimination and fewer years of work experience. When they do find work, they earn less than men do, and the wage gap increases with age. Furthermore, may women work outside the home sporadically or in temporary or part-time positions, often because of care giving responsibilities. Along with women who hold low-paying jobs, they often receive little or no retirement benefits. Social security' is, therefore, often the only source of income for many older women. Though work is usually associated with paid labor, the role of the unpaid caregiver has important consequences for older women’s health. The typical unpaid caregiver is a woman in her middle years of older providing care to a parent, spouse, or other relative. In some cases, she may be caring for children or even grandchildren. Care 129 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. giving can create a drain financially; however, it is likely to have an even greater emotional and physical impact, particularly if provided later in life. The stresses and strains older caregivers experience such as family conflicts and the inability to take a break from care giving duties can lead to depression, reduced immunity levels, poor general health, and lower quality of life.6 5 Research and Treatment Issues. Medical research until recently has largely ignored many health issues important to older women, including diseases that affect women across the life span. Diseases such as breast and cervical cancers and osteoporosis that affect women exclusively or disproportionately have not received sufficient attention. Neither have those that affect women in different ways from men such as heart disease. The onset of heart disease and its symptomology generally occurs about 10 years later in women’s lives than in men’s. For women, heart disease appears predominantly as a postmenopausal disorder. Statistics indicate that there is a lower rate of heart disease mortality in women prior to menopause than in men (47.8 per 100,000 among white females ages 45-54, compared with 162.2 per 100,000 among white males ages 45-54). However, this difference narrows with age. In addition, during 1979-89 death rates from heart disease declined as family income increased. For persons, 65 years of age and over, the income gradient in heart disease was similar for men and women (see figure 3.22)6 6 Differences in heart disease mortality (age-adjusted) between African American and white women remain great (it is two-thirds higher for African American for African American women) and in fact grew in recent years. Both rates are declining, but the decline has been much greater for white women. Age-adjusted heart disease mortality 130 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. among Hispanic, Native American, and Asian/Pacific Islander women is lower than for white women.67 O f the screening and diagnostic tests available for heart disease, few have been specifically tested on women; thus, their efficacy in women is unknown. However, electrocardiograms (EKGs) and exercise stress tests — key components of a diagnostic work-up — are not as reliable for making an accurate diagnosis in women as they are in men. These diagnostic tests, based on research with men, show more false results in 6 8 women. m SOURCE: Centers for Disease Control and Prevention. NCHS, Healthy People. 1998. Actual disease presentation and response to treatment also differs for women and men. Most studies find that angina is usually the first warning of heart disease in women, whereas the first warning in men is often a heart attack. Since chest pain is a less specific 131 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. indicator of heart disease, time from the onset of symptoms to diagnosis of disease is often much longer in women. The result is that women are typically sicker cardiac patients by the time they are evaluated and treated. Being older and sicker is also reflected in the greater potential for poorer outcomes from cardiac procedures. Clinical trials for women are still needed to determine the true appropriateness of treatments.6 9 Older women have been excluded from clinical trials and other research initiatives. In addition, reliable health information has not been easily accessible to women so that they can use it to make informed choices about their health care. For the most past, women are currently diagnosed and treated based on what has worked for men. This male model can lead to problems. For instance, several studies have found that health care providers treat women differently from men. They may give them less thorough evaluations for similar complaints, provider fewer interventions for the same diagnoses, prescribe some types of medications more often, or provide less explanation in response to questions. To improve older women’s health, a broader, more multidisciplinary view of health is needed. Such a perspective would incorporate healthy aging and would consider the whole person, including general mental and physical condition as well as the impact of environmental factors on health and disease.7 0 Older W omen’s Health Priorities. Some older women’s health care needs are different from those of older men partly because of how they experience aging. Women in general seek preventive care more often than men, but are hampered by a lack of information about many health issues of importance do. For instance, although many 132 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. more older women than older men are victims of osteoporosis, women may not be fully aware of the devastating effects that this disease can have on their lives. Depression and urinary incontinence strike women disproportionately; in both cases many do not seek treatment in spite of the fact that most of them could be helped. Finally, breast cancer, reproductive tract cancers and disorders, and hysterectomy either exclusively or disproportionately involve women or can have significant effects on their health.n Compared to men, elderly women are three times more likely to be widowed or living alone, spending more years and a larger portion of their lifetimes disabled or residing in a nursing facility. This has caused many older women’s groups like the Older Women’s League (OWL) to put pressure on private organizations and the government to assist in creating healthier living situations for this growing population o f women. The federal government has responded by devoting new resources to meeting their needs. The NIH Women’s Health Initiative. This $625 million, 40-site initiative is one of the largest prevention studies of its kind. It has begun examining the major causes of death, disability and frailty in post-menopausal women. It includes a clinical trail o f promising but unproven approaches to prevention, as well as an observational study to identify predictors of disease, and a study of community approaches to developing healthful behaviors. This multi-year study is examining the effects of low-fat diets on prevention of breast and colon cancer and coronary heart disease; the effect of hormone replacement therapy on prevention o f coronary heart disease and osteoporotic fractures; and the effect of calcium and vitamin D supplementation on prevention of osteoporotic fractures. The community prevention trial portion of the study, being conducted with the Centers for Disease Control, will evaluate strategies for adoption of healthful behaviors including early detection for women of diverse races, ethnic groups and socioeconomic groups.7 2 Study of Women’s Health Across the Nation. The National Institute of Aging is sponsoring a large-scale national study to examine the health of women in their 40s and 50s. SWAN tracks the health of women during the transitional years of middle age, to measure impacts on later life. The study examines the physical, psychological and social changes that take place at 133 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. mid-life, and focuses on behaviors such as having children after age 40, diet and exercise, alcohol consumption, and exposure to environmental toxins.7 3 - Initiative on Older Women. Launched in 1994 by the Administration, on Aging, the initiative is creating partnerships designed to address the needs of older women; addressing women’s capacity to contribute significantly to society throughout their lives; and establishing an Older Women’s Policy and Resource Center to educate older women at the grassroots level about issues such income security, health, and care giving and the importance of addressing these concerns.7 4 Elder nutrition. Recognizing that 85 percent of older individuals have a nutrition-related condition or chronic disease, the Administration on Aging is also continuing to support community nutrition services. Each year, nutrition assistance funds help provide about 250 million meals for older persons. About 60 percent of the meal recipients are women. Federal spending on these programs is leveraged by state, local and private funds. 5 SUMMARY AND CONCLUSIONS As this overview of identity movements reveals, the multiplicity of women’s concerns defies easy characterization. Perceptions of what’s important reflect complex and differential systems of stratification as well as culture. The intent of this chapter was to discuss how the federal government is expanding its notions of women’s health based upon pressure from various communities of women as well as the biomedical focus of health care policymaking in the U.S. has created more ill health among communities rather than health. By highlighting differences in women’s overall health by examining race/ethnicity and class, the picture of what needs to be accomplished to create healthy communities becomes clear. A radical plural feminist model takes into account these factors along with gender and more specifically addresses the needs of each community. Many o f the health concerns of women of color may also have particular salience for 134 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. white women who are at the bottom o f the economic ladder. Many of the health issues are similar however, the root causes o f these concerns may be extremely different. This difference is important to know if the goal is to devise solutions that are cost effective. If policymakers can focus on these root causes of health problems, limited resources can be applied more equitably. The data presented throughout this Chapter support the hypothesis that not only does gender stereotyping affect women’s health but race/ethnic stereotyping as well. A radical plural model o f health recognizes the concerns of specific communities while not ignoring gender. The challenge is to not evade difference but to create comprehensive policy. This is virtually impossible if policymakers and health care professionals ignore a common health issue for all women: violence. It is to a consideration o f this crucial issue that the next chapter addresses. 135 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. CHAPTER ENDNOTES 1 U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics. Health. United States. 1998 with Socioeconomic Status and Health Chartbook (Hvattsville: DHHS, 1998) 23. 2 See LM Verbrugge, and DL Patrick. “Seven Chronic conditions and Their Impact on U.S. Adult Activity Levels and Use o f Medical Services,” American Journal of Public Health 85(2): 173-82, 1995 and MA Stoto and JS Durch. “National Health Objectives for the Year 2000:the Demographic Impact of Health Promotion and Disease Prevention,” American Journal o f Public Health 81(11)1456-65,1995. 3 U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics. Health. United States. 1998 with Socioeconomic Status and Health Chartbook. 104. 4 U.S. Department of Health and Human Services. “Estimates from the National Health Interview Survey, 1995.” Vital and Health Statistics. Series 10, No. 173, DHHS Publication No. (PHS)89-1501. (Washington, D.C.: 1996). 5 U.S. Department of Health and Human Services, Public Health Service. “Progress Review: People with Low Income,” (Washington, D C.: DHHS (PHS), 1997). 6 U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics. Health. United States. 1998 with Socioeconomic Status and Health Chartbook. 114-16. 7 U.S. Department of Health and Human Services (DHHS). “Healthy People 2000: National Health Promotion and Disease Prevention Objectives,” (Washington, Government Printing Office, 1991) “goals”. U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics. Health. United States. 1998 with Socioeconomic Status and Health Chartbook 120-1. 9 U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics. Health. United States. 1998 with Socioeconomic Status and Health Chartbook. 112-13. 1 0 U.S. Department of Health and Human Services (DHHS). “Healthy People 2000: National Health Promotion and Disease Prevention Objectives,” (Washington, Government Printing Office, 1991) “goals”. 136 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 1 1 U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics. Health. United States. 1998 with Socioeconomic Status and Health Chartbook. 108-11. 1 2 Rosalind Petchesky. Abortion and Woman’s Choice: The State. Sexuality, and Reproductive Freedom (Boston: Northeastern University Press, 1985) 192. 1 3 Ruzek, The Women’s Health Movement: Feminist Alternatives to Medical Control, chapter 3. 1 4 Audre Lorde. “Age, Race, Class, and Sex: Women Redefining Difference,” in Sister Outsider (Freedom: Crossing Press, 1984) 114-23. 1 5 bel, hooks. Ain’t I A Woman? Black Women and Feminism (Boston: South End Press, 1981) and hooks, Feminist Theory: From Margin to Center (Boston: South End Press, 1984). 1 6 Esther Ngan-Ling Chow. “The Development of Feminist Consciousness Among Asian American Women,” in Gender and Society 1:284-99. 1 ' Esther Ngan-Ling Chow. “Asian American Women at Work,” in Maxine Baca Zinn and Bonnie Thornton Dill, eds. Women of Color in U.S. Society (Philadelphia: Temple University Press, 1994) 203-28. 1 8 Patricia Zavella. “The Problematic Relationship of Feminism and Chicana Studies,” Women Studies. 17:25-36. 1 9 Ruth E. Zambrana. “A Research Agenda on Issues Affecting Poor and Minority Women: A Model for Understanding Health Needs,” Women and Health 12(3-4): 137-60. 2 0 Ruzek, The Women’s Health Movement: Feminist Alternatives to Medical Control. 47, 69, 107. 2 1 The extensive literature on sex differences in health has been reviewed extensively by Charlotte Muller in 1990. In much of this literature, race and class (when included) tended to be adjusted for or study groups were made homogeneous to allow for analysis of the variable of interest - differences between men and women. For the most complete analysis of social class as a critical factor in women’s health, see Elizabeth Fee, and Nancy Krieger, eds. Women’s Health. Politics, and Power: Essays on Sex/Gender. Medicine, and Public Health (Amityville: Baywood Publishers, 1994). 2 3 Davis, Women. Race, and Class. 202-222. 137 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Boston Women’s Health. Book Collective, Our Body. Ourselves for the Next Century. Introduction. 2 5 Patricia Hill Collins. Black Feminist Thought: Knowledge. Consciousness, and the Politics of Empowerment (Boston: Unwin Hyman, 1990) 101-26. 2 6 hooks, Sister of the Yam: Black Women and Self-Recovery. 2 7 Davis, Women. Race, and Class. 202-22. 2 8 Davis, Women. Race, and Class. 202-22. 2 9 National Institutes o f Health, ‘‘Report on Reproductive Health,” National Health Report. Spring 1997, Appendix A. 3 0 Office of Minority Health, “Report on Health Issues Facing Women,” Minority Health Report. Fall 1997, Chapter 4. 3 1 Bridgett Davis. “Speaking of Grief: Today I Fell Real Low, I Hope You Understand,” in Evelyn White, ed. The Black Women’s Health Boole Speaking for Ourselves (Seattle: Seal Press, 1990) 103. 3 2 U.S. Department of Health and Human Services (DHHS). “Healthy People 2000: National Health Promotion and Disease Prevention Objectives,” (Washington, Government Printing Office, 1991) 91-50212. 3 3 Lacev. Shanna and Nicholas P. and Michelle S. v. Supreme Court of Appeals of West Virginia, no. 21528, decision 1993. 3 4 Shirley Hill Witt. “Native American Women Today,” in Alison Jaggar and Paula Rothenberg, eds. Feminist Frameworks (New York: McGraw Hill, 1993) 36. 3 5 Witt, “Native American Women Today,” 37. 3 6 Metcalf. “Old Woes, Old Ways, New Dawn: Native American Women’s Health Issues,” in Ruzek, et al. Women’s Health: Complexities and Differences. 276-299. 3 7 Metcalf. “Old Woes, Old Ways, New Dawn: Native American Women’s Health Issues,” 276-285. 38 Katsi Cook. “Social Control o f Childbirth: A Native American Response,” in Helen B. Homes, Betty Hoskins, and Michael Gross, eds. Birth Control and Controlling Birth: Women-Centered Perspectives (Clifton, Humana Press, 1980) 251-58. 138 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 9 Women of All Red Nations. “Mission Statement, 1998.” 4 0 Denise Drevdahl. “Images of Health: Perceptions of Urban American-Indian Women,” in Barbara Bair and Susan E. CaylefF, eds. Wings of Gauze (Detroit: Wayne State University Press, 1993) 122-29. 4 1 Aileen Hernandez. National Women o f Color Organizations: A Report to the Ford Foundation (New York: Ford Foundation, 1991. 4 2 Department of Health and Human Services. “Progress Report for American Indians and Alaska Natives,” (Washington, D.C.: DHHS, (PHS), 1995). 4 3 Department of Health and Human Services. “Progress Review: Hispanic Americans,” (Washington, D.C.: DHHS, (PHS), 1997). 4 4 Department of Health and Human Services. “Progress Review: Hispanic Americans,” (Washington, D.C.: DHHS, (PHS), 1997). 4 5 Susan Scrimshaw, Ruth E. Zambrana, and Christine Dunkel-Schetter. “Issues in Latino Women’s Health: Myths and Challenges,” in Ruzek, et al. Women’s Health: Complexities and Differences. 329-330. 4 6 No. 78-3187 (9th Cir., filed October 1979, undecided as of Fall 1997). 47 Susan Scrimshaw, Susan, Ruth E. Zambrana, and Christine Dunkel-Schetter. “Issues in Latino Women’s Health: Myths and Challenges,” 329-335. 4 8 Luz Alvarez Martinez. ‘The Hispanic Reproductive Rights Movement,” Hastings Women’s Law Journal. Vol. 3:1, 1991, 92. 4 9 This nonprofit organization was founded in 1970. It has 1800 members with 8 active affiliates. This group is “dedicated to the advancement of the Hispanic woman - politically, socially, economically, and educationally. It is an advocacy organization which has also provided direct services to Hispanics through organizations which it created and which now operate independently.” Current issues included: Affirmative Action, employment/training, pay equity, reproductive rights; teenage pregnancy; education; child care; housing; families; leadership development. 5 0 The National Hispanics Caucus, Inc. was founded in 1985. The purpose of this non profit organization is the leadership development of Hispanics: “enhancing skills; fostering intern relationships and securing appointments to commissions, etc.; education in women’s history, especially relating to one specific group; and training in self- assertion. Currently agenda items include addressing: poverty, housing and employment.” 139 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 5 1 Aileen Hernandez. National Women of Color Organizations: A Report to the Ford Foundation. ^ 2 Martinez, ‘The Hispanic Reproductive Rights Movement,” 92. 5 3 Scrimshaw et al., “Issues in Latino Women’s Health: Myths and Challenges,” 344. 5 4 Department of Health and Human Services. “Progress Review: Hispanic Americans,” (Washington, D.C.: DHHS, (PHS), 1997). 5 5 U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics. Health. United States. 1998 with Socioeconomic Status and Health Chartbook. 34-35. 5 6 Shawn Hubler. “80s Failed to End Economic Disparity, Census Shows,” Los Angeles Times Aug. 17, 1992. 5/ Judith Kulig. “A Review of Health Status of Southeast Asian Refugee Women,” Health Care for Women International ll(l):49-64. Department of Health and Human Services. “Progress Review: Asian Americans and Pacific Islanders,” (Washington, D.C.: DHHS, (PHS), 1997). 5 9 Department of Health and Human Services. “Progress Review: Asian Americans and Pacific Islanders,” (Washington, D.C.: DHHS, (PHS), 1997). 6 0 The Women’s Health Information Network. Fact Sheet. 1998. 6 1 National Asian Women’s Health Organization. “Why Have a Cancer Project for Asian American Women? (San Francisco: NAWHO, 1998). * National Asian Women’s Health Organization. “Why Have a Cancer Project for Asian American Women? (San Francisco: NAWHO, 1998). 6 3 National Asian Women’s Health Organization. “Why Have a Cancer Project for Asian American Women? (San Francisco: NAWHO, 1998). 6 4 Department of Health and Human Services, Public Health Service’s Office of Women’s Health. “Why Older Women’s Health Is Important,” (Washington, D.C.: Office of Women’s Health, 1998). 140 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 6 5 Department of Health and Human Services, Public Health Service’s Office of Women’s Health. “Public Health Perspectives: Older Women,” (Washington, D.C.: Office of Women’s Health, 1998). 6 6 The Commonwealth Fund Commission on Women’s Health. The Health of Women in the United States: Gender Differences and Gender-Specific Conditions (New York: Columbia University, 1997) 7-8. 6 7 The Commonwealth Fund Commission on Women’s Health. The Health of Women in the United States: Gender Differences and Gender-Specific Conditions (New York: Columbia University, 1997) 8. 6 8 The Commonwealth Fund Commission on Women’s Health. The Health of Women in the United States: Gender Differences and Gender-Specific Conditions (New York: Columbia University, 1997) 8. 6 9 The Commonwealth Fund Commission on Women’s Health. The Health of Women in the United States: Gender Differences and Gender-Specific Conditions (New York: Columbia University, 1997) 8. 7 0 Department of Health and Human Services, Public Health Service’s Office of Women’s Health. “Research and Treatment Issues for Older Women,” (Washington, D.C.: Office o f Women’s Health, 1998). 71 Department of Health and Human Services, Public Health Service’s Office of Women’s Health. “Health Priorities: Older Women,” (Washington, D.C.: Office of Women’s Health, 1998). 72 National Institutes of Health, Office of Research on Women’s Health. “Women’s Health Initiative,” 1992. ^National Institutes of Health, National Institute for Nursing Research, Office of Women’s Health. “Study of Women Across the Nation,” 1996. 7 4 Administration on Aging. ‘Initiative on Older Women’s Health” 1994. 7 5 Administration on Aging. “Elder Nutrition,” 1996. 141 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. CHAPTER IV GENDER VIOLENCE AND WOMEN’S HEALTH The previous chapter discussed how difference plays an important role in determining a woman’s health. As stated, in each community o f women the issue of violence arose as a serious health concern. It is only in the past decade, due to pressure from diverse women’s groups, that policymakers have begun to address this as part of the nation’s health agenda. The current debate, however, is limited. Thus far, politicians along with health care policymakers have treated the issue o f violence against women as a separate category by developing generic policies that are applied to them as a group. They have also excluded law enforcement as a crucial link in addressing the problem and finding appropriate solutions. It is crucial that both of these arenas work together with full participation from all communities of women. The debate must be focussed on the diverse dynamics involved in combating the problem. The complexities of race, ethnicity, and class discussed throughout this analysis must be part of the equation. The model that makes this issue homogenous according to white women’s definition must be negated. The link is to examine the various definitions of violence against women. Power and social control are intertwined, and they affect women’s health. The subject of violence against women illustrates effectively how the powerful relegate the powerless to 142 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. inadequate health care, particularly when the stigma and marginality made the inadequacies of care invisible. This can be substantiated by looking at the dynamics of violence against women and what happens when these incidences become public in health care situations. This chapter highlights the many ways in which social and cultural arrangements shape both the extent and subjective experiences of violence. From the most intimate to the most public places, violence affects women’s health. I VIOLENCE AGAINST WOMEN: A PUBLIC HEALTH PROBLEM Violence against women is a significant contributor to poor health in women. The injuries caused by physical abuse contribute to a wide range of illnesses, some of them short lived, others chronic. Some of the physical injuries such as bruises and broken bones can be short term; others, such as loss o f vision can be lasting. Physical problems that occur in the wake of abuse include everything from low back pain to sexually transmitted diseases.1 The consequences of violence during pregnancy can be particularly profound. They can include premature labor, injury or even death to the fetus.2 Women who have been physically abused by their partners are almost twice as likely to say their health is only fair or poor.3 Women who have suffered domestic abuse make only slightly more visits per year than other women to physicians (6.5 visits compared to 5.4 visits), although they are significantly more likely to report that they did not receive needed medical care in the previous year (38 percent compared to 12 percent 143 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. of other women). One explanation may be that the abusing partner prevents a woman from obtaining medical attention (see figure 4.1)4 SOURCE: S.B. Plichta. “Violence and Abuse: Implications for Women’s Health.” in Women’s Health: The Commonwealth Fund Survey, ed. M ..V1. Falik and K.S. Collins (Baltimore: Johns Hopkins University Press, 1996) 237-70. Violence against women also generates substantial costs for the nation’s health care system. Adult family violence incurs medical costs of almost $2 billion per year.2 Domestic violence is a frequent underlying cause of injuries and illnesses that bring women to hospital emergency rooms. One study found that 12 percent of women who had a current male partner and were in the emergency department suffered from acute domestic violence. While 23 percent of the women afflicted by domestic violence sought care in the emergency department on account of trauma, a mere 13 percent discussed the violence with or were questioned about it by emergency department professionals.5 One study estimated the emergency room costs in New York City hospitals for injuries attributable to domestic violence at $506 million.7 144 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. [n summary, violence against women is a significant and frequently hidden contributor to poor health in women. Given its negative consequences for health and well-being, violence is as much a public health problem as smoking or drunk driving. Violence is also the source of significant health care and social service programs, which may be attributed to other causes because so much of violence against women remains hidden and unacknowledged. 2 THE ANTI-VIOLENCE MOVEMENT The anti-violence portion of the women’s health movement has been one of the most successful mobilizations by women to date. During the last few decades, this movement has transformed the way society understands the almost routine forms of violence which shape women’s lives. This movement contested the traditional views of rape and domestic violence - views that characterized rape as errant sexual aggression and domestic violence as a private family matter 8 The success of the movement in challenging the terms of debate is apparent with Congress’s passage of the Violence Against Women Act (VAWA)9 in 1994, which, among other things, made rape and battering civil rights violations. Yet the failure of this movement was to treat violence against women as homogeneous, i.e., violence is violence no matter who the woman is or where she is from. This becomes ever so apparent when we examine how victims o f violence have been treated by the dominant health care structure. 145 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. As the Clinton Administration worked on its “Health People 2000” goals, women’s organizations from all over the country raised their voices in protest as the document did not address violence as a health issue. Particularly affected were women of color whose experiences with violence fall in the public as well as the private realm. The document did not address how the Department of Health and Human Services and other agencies plan to reduce or better yet eliminate violent, unhealthy situations in the next century. 1 0 As it stands the document now has a section on violence but it again assumes universality. Section Seven is entitled “Violent and Abusive Behavior.” It groups all forms of violence together and does not specifically addressing violence against women. A global view of violence cannot be assumed. Women themselves cannot agree on causation — let alone solutions. What can be brought forth, however, are different voices with various solutions. Most women’s health advocates agree; when it comes to violence against women, a band-aid approach is more detrimental to women’s health than beneficial.1 1 Health care institutions themselves are traditional centers of social control. As stated early on in this analysis, the medical profession seeks to cure people immediately. If a woman comes in with a broken arm, the simple solution is to treat the arm, not the cause of the break. When it comes to violence experienced by women, the medical profession has not been adequately trained to treat what they term “social symptoms”. Traditionally, the medical profession argued that it was not their responsibility to cure society’s social ills. Today, the costs of the ills are tremendous, and many professional organizations are beginning to work together to look more closely at the root causes of 146 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. violence against women. Gradually, this is changing as women’s health organizations push for a more integrated approach to treating violence against women. The key, however, is to not only dismantle the male hierarchy in medicine, a most difficult, if not impossible task, but also to address racism’s role in preventing adequate care for all women.1 2 3 VIOLENCE AGAINST WOMEN ACT TV AW A) In 1994, after several years o f negotiation, Congress approved the Violence Against Women Act (VAWA) as Title IV of the Violent Crime Control and Law Enforcement Act of 1994. VAWA provides S1.6 billion over six years to fund state grants to strengthen law enforcement, prosecution, and victim services (including health care treatment); established education and prevention grants to reduce sexual assaults against women and a national domestic violence hotline; and included new penalties under federal law for sex crimes.1 3 Authored by Senator Joseph Biden of Delaware, the VAWA acknowledges the need for comprehensive governmental response to supplement laws at the local level. The law provides additional protections for victims of violence, including the provision that states must reciprocally honor civil protection orders limiting contact between abusers and victims. Perhaps the most far-reaching aspect of the law is that it recognizes 147 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. violence against women as gender-bias crime, acknowledging that acts o f violence against women discriminate against women as a class.1 4 However, the VAWA in addressing women as a class does not address race discrimination, nor discrimination against protections for older women. The Act does offer hope but must be equally applicable to ail groups of women. The social context in which abuses flourish must be addressed. The passage of the VAWA addresses social context to a certain extent in that it reflected a culmination of a growing consensus between the largely community-based shelter movement and state and federal policymakers that: (a) family violence is as serious a crime as other crimes against persons, (b) the safety of domestic violence victims and their children should be a top priority, and (c) meeting the victim’s needs requires significant changes to be made to a range of traditional services. Reflecting this consensus, virtually all states have greatly expanded civil and criminal remedies to victims and changed their policies on arrest and judicial sanctions to be more supportive of the victims of domestic assault. The interface of law enforcement and domestic violence services locally has expanded consistently over the past decade.1 5 One can be heartened when influential organizations, such as the American Medical Association, acknowledged that sexual assault and domestic violence imperil the physical well-being of women,1 6 yet one must be wary of how such a position will be interpreted in policy and practice in the years to come. In addition to private medical associations responding positively to the VAWA, various governmental interagency task forces have convened to develop research, planning, and program initiatives between the Departments of Justice and Health and 148 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Human Services and other branches of government. Yet, despite the VAWA strongly encouraging local coordination in planning and service delivery between health, justice and community-based services, no federal funds have been explicitly targeted for this purpose.1 7 One of the reasons for the lack of funding may be the slow and inconsistent response of the health care community to violence against women. Even though research funded by the National Institute o f Mental Health in the late 1970s had demonstrated the importance of violence as a determinant of women’s health problems and had documented widespread failure to identify the problem in health care settings, the general health care community was unresponsive. Efforts to expand hospital-based rape crisis teams to include all forms of violence against women were sporadic and proved difficult to sustain.1 8 In 1991, former Surgeon General C. Everett Koop became the first public official to identify violence against women as a public health problem. He argued that the health care community should target violence as a priority for the public health and medical care systems: Identifying violence as a public health issue is a relatively new idea. Traditionally, when confronted by the circumstances of violence, the health professionals have deferred to the criminal justice system.. .Today the professions of medicine, nursing, and the health related social services must come forward and recognize violence as their issue.1 9 Defining what it means for medical professionals to “recognize violence as their issue” has proved to be difficult, particularly because it has implications that reach far beyond the physician’s office. Various rationales have evolved to explain physicians’ 149 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. consistent distancing from violence, especially domestic violence. One early theory suggested that identification in medical settings was difficult because battered women were reluctant to discuss the real cause of their injuries. Yet researchers have used simple interview techniques and questionnaires to uncover substantial rates of domestic violence in various medical settings, suggesting that identification is not so difficult after all. Next was concern that some patients would be offended by questions about violence at home; in deference, physicians were reluctant to discuss the issue. Again, high rates of patient participation in domestic violence research have belied this concern. More recent explanations explore physicians’ projected helplessness and their belief that domestic violence is a Pandora’s box without a solution. This rationale is inconsistent with physicians’ usual determination when faced with near-certain failure in other areas. Obviously, other factors are at work.2 0 However much it is idealized, only a small portion of what happens in the physician-patient encounter is determined by individual physicians. The encounter is shaped by its social and cultural context, the policies and resources of health care institutions, and the beliefs, values, and professional norms of the medical community. It is naive to expect substantial changes in how victims of violence are treated by individual physicians unless there are concurrent changes in these latter areas. 150 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 4 VIOLENCE AS A PUBLIC ISSUE The problems of rape, battering, and other forms of violence against women have existed throughout history. Only recently have these experiences, traditionally accepted as natural events in the course of women’s lives, been given significant attention by policymakers. One could argue that as female violence has become more expensive for the public, there has been more of an outcry against it. As one policymaker stated regarding domestic violence: For too long, domestic violence has been framed and understood exclusively as a woman’s issue. But domestic violence must no longer be viewed as a problem only affecting women - increasingly, spouse abuse is a problem devastating every sector of society, overwhelming our courts and hospitals, spilling over into our streets, and filling our morgues. We must all be a part of the solution if we are to address the deadly toll this epidemic is taking, and men have a critical role to play in doing so.2 1 Notice that the above argument is not to stop violence simply because women are being maimed, disabled and killed but because society is now bearing the financial burden. Because men have traditionally controlled positions of power from which issues and problems are defined, it is men’s definitions, based on their experiences, that shape the issues to which the world attends. As violence becomes more costly in the public health realm, it becomes an issue. C. Everett Koop reflects this ideology so clearly when he remarked: "Every day violence becomes more of a public health issue. It has major impact upon our clinics, our emergency rooms, and all of our health care facilities.”2 2 151 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Health and Human Services tends to quantify the affects violence has on public health financially. For example, they estimate that domestic violence alone causes 21,000 hospitalizations annually, 28,700 emergency department visits; and 39,900 physician’s visits.2 3 There is a tendency in government and public health institutions to focus only on the number of individual women, children, and men who are damaged or lost due to violence against women and the costs to the system itself. This narrow focus on individual victims and perpetrators involved in violence rather than on an examination of the role social institutions play in the maintenance of violence against women represents one of the major gaps in the analysis of this pervasive health issue. Paradoxically, as implied throughout this analysis, the very institutions which have been constructed for the protection and care of the public good — such as the criminal justice system, hospitals, and health care agencies - have long sanctioned disparate and unequal attention to women in society. Only through a critique of these historically patriarchal and often sexist institutions will we comprehend violence as more than individual acts by perpetrators against victims.2 4 Another equally problematic gap in contemporary analysis and study of violence against women exists with regard to race and ethnicity, i.e., how individual and institutional racism affects the lives of women of color who experience violence. With a few notable exceptions, there is very little research on the ways that traditional responses of medical institutions to violence against women are complicated by racism, and therefore, how women of color are systematically at a disadvantage when seeking medical help in most violent situations.2 5 152 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. The result is that women who are African-American, Native-American, Hispanic, Asian/Pacific Islander, and members of other communities of color not discussed are vulnerable to abuse not only from their partners but from insensitive, ineffective medical institutions as well. This is made all the more difficult if the woman is older. Violence against women is not a singular phenomenon, but many different phenomena that, moreover, take place in many radically different contexts and situations. Women of color can no longer be collapsed into a single category called “nonwhite”, as was the case just twenty years ago. Violence against women, and fears and threats of violence, are significant health and social problems that affect all social groups, and all races, rich and poor, abled and disabled in very different ways.2 6 Dr. Helen Rodriguez-Trias, former president of the American Public Health Association, noted the magnitude of this problem in an editorial in the American Journal of Public Health, “assaults by husbands, ex-husbands, lovers cause more injuries to women than motor vehicle accidents, rape and muggings combined.”2 7 Before discussing, specific issues o f race, and age, it is helpful to know how the government views the overall magnitude of this health problem. According to the Office of Women’s Health, a division of the Department of Health and Human Services, as of 1997: -Nearly one-fourth of the women in the U.S. - more than 12 — will be abused by a current - or former partner some time during their lives -Domestic violence is the leading cause of injury to women between the ages o f 15 and 44 -19 to 30 percent of the women seeking treatment in emergency rooms has been battered (clearly this would be much higher if the women admitted or abuse) 153 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. -Every 21 days in the U.S., a woman is killed by domestic violence -Up to 50 percent of all homeless women and children in this country are fleeing domestic violence -53 percent of male abusers beat their children -Factors such as poverty, single-parent households headed by women, and parents with less than a high school education were found more common among families suffering abuse -The Center for Disease Control found in a national survey that 34 percent of adults in the U.S. had witnessed a man beating his wife or girlfriend -More than one million women seek medical assistance each year for injuries caused by battering (again an underestimation) -More than twice as many women are killed by their husbands or boyfriends than are murdered by strangers -The average prison sentence of men who kill their women partners is two to six years. Women who kill their partners are, on average, sentenced to 15 years. -Battered women are more likely to suffer miscarriages and to give birth to babies with low birth weights -There is 1,500 shelters for battered women in the U.S. There are 3,800 animal shelters -21 percent of women who experienced childhood sexual abuse rate their health as fair or poor -24 percent report having a urinary tract infection -Seven percent report having a sexually transmitted disease -Women who experience abuse are more likely to have depression or anxiety disorders and to consider suicide seriously -Almost three in five women (59 percent) who were injured crime victims reported that the physician or emergency room staff who treated them did not refer them to a support service -Women commonly remain silent about abuse. A majority o f women abused by their spouses (61 percent) and nearly one-third of women, who were sexually abused as children, did not discuss abuse with anyone. Only nine percent of women abused by their 154 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. spouse and 26 percent of women who were sexually abused as children had ever discussed abuse with a physician. -Women victims o f violence often report not receiving necessary medical care. 21 percent of women who experienced childhood sexual abuse, 38 percent of women who reported spousal abuse, and 38 percent of women who had been raped within the prior five years reported not getting needed medical care. -Abused women are more likely to use emergency rooms as their regular source of care. -Poor communications with physicians appears to be one barrier to effective diagnosis, comprehensive treatment, and counseling of abused women. Four out of ten women who experienced childhood sexual abuse found their physicians lacking in compassion and communication skills, reporting that they “talked down to me” or said their medical problems were “all in my head”. Nearly 16 percent reported having been sexually harassed by a physician, compared to five percent of those who did not report abuse. The different types of violence have various health consequences in terms of increased visits to physicians, physical and emotional trauma, and there is some evidence that the use of alcohol and drugs can further disrupt women’s physical and psychological health. According to the 1998 Our Body. Ourselves for the Next Century, there are at least 30 specific forms of violence against women ranging from sterilization abuse to rape to battery. Ironically, it is trusted family members and partners who pose the greatest threats to women’s health and safety. The most dangerous place for women is in 29 the home. Battery of pregnant women is becoming more and more common — which makes it a pressing health concern. A 1985 National Family Violence Survey, for example, found that 15 percent of pregnant women were assaulted by their partners in the first four months of pregnancy and seventeen percent during the last five months.3 0 In 1991, Judith McFarlane, a violence expert, reported 26 percent of pregnant teens were involved with a man who physically harmed them and 46 percent said that the assaults had begun or 155 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. escalated with the pregnancy.3 1 Obviously, pregnant victims of partner violence face particularly serious medical risks. These include according to one physician L.E. Saltzman: “pre-term labor, miscarriage, placental separation, ante-partum hemorrhage, fetal fractures, and rupture of the uterus, liver, or spleen.”3 2 Rape also is a form of violence that has fundamental health consequences, especially for women of color. According to the Boston Women’s Book Collective: Almost 133,000 women were victims of rape or attempted rape each year between 1990 and 1995. And African- American women experience higher rates of rape than white or Hispanic women. In these instances, often times it is hard to determine whether race is the issue or class. With rape - the double jeopardy is even worse. “The man who raped me was white, and the cops here are all white. I didn’t report it. [just told a few people I trusted. It helped, but I still feel scared, knowing he’s out there and that nobody would do anything about it.”3 3 People in positions of power often times dismiss violence done to women o f color as insignificant. In addition, a woman of color faces a heightened vulnerability if she is not fluent in English or is not a citizen, because it is easier for men to take advantage of her and harder for her to get help. Furthermore, society rarely takes acts of violence as seriously if the victim is poor, elderly.3 4 The June 1992 issue of the Journal of American Medical Association was devoted to the problem of gender violence.3 5 With pressure from groups like the Black Women’s Health Project and the National Women’s Health Project, the reduction of violence and abusive behavior is a major health goal in the next century. Initiatives against all kinds of violence are proliferating. Because such violence continues at frightening levels in all 156 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. spheres of American life, it will likely remain a national health issue for some time, costly in numerous ways, especially in women’s suffering.3 6 As stated, violence suffered by women comes from several different sources. Visible violence is often believed to stem from poverty. This may be because more poor women report incidences of violence as they often use social services that the government offers.3 7 Efforts to politicize violence should not stop at violence caused by what is understood to be poverty and gender. Race should be a considerable factor in the equation. Yet because women are similarly vulnerable to all forms of gender violence, many feminists, policymakers, and health care activists see race as largely irrelevant in the overall effort to politicize violence against women. This traditional emphasis on commonality between women, however, obscures the ways in which gender subordination interacts with race and other forms of domination. Strategies that fail to acknowledge and accommodate such differences may be ineffective in addressing the health needs of women of color who are victims of violence. Statistics and media tell us that violence is read in a way that devalues and sometimes wholly erases women of color. Yet this devaluation and erasure seldom emerges in mainstream political debate.3 8 Interviews with crisis counselors from African, Native, Hispanic, and Asian communities report that need to protect community integrity has frequently been used as a justification for suppressing the violence suffered by women of color. Women of color, afraid of being chastised or ostracized, often observe these expectations protecting family honor and community interests.3 9 157 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Family honor and community integrity obliges women not to scream rather than men not to abuse. The connections between gender violence and other problems the community face are not addressed. For instance, a report in the Congressional Record indicates that in one study 63 percent of young men between the ages of eleven and twenty incarcerated for homicides killed their mother’s batterer.4 0 Abuse of women is simultaneously a political issue, a health question, a social problem, and a personal problem, as it typifies the social control of women, usually by men but also sometimes by female partners. Men, in general, have more social authority and power - physical, economic and political - than women, which enables them to impose and enforce their interpretation of reality on others. Further, in abusive male- female situations, many elements - inability to escape, lack of economic independence, ineffective law enforcement policies, and diminution in self-confidence - render women even more susceptible to male control.4 1 Racism compounds all of this even further. 5 CONSIDERING WOMEN OF COLOR AND VIOLENCE In order to understand the circumstances and tensions experienced by women of color who have been victims of violence, it is important to understand the interface of gender inequality, sexism, and racism as they affect women both in their racial/ethnic communities and in society at large. Because of the powerful effects of a violent relationship, many abused women of color are required, either overtly or covertly, to balance the often-conflicting needs and expectations of their abusers, their communities, 158 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. and the larger society. These conflicting expectations, rules, and loyalties often compromise the strategies which are available to liberate women of color from violent relationships. This discussion will serve as a foundation for examining the compound effects of oppression which many women of color face even prior to entering the health care system for medical treatment of and protection from violence.4 2 Communities of color in this country have historically been devastated by discriminatory and repressive political, social, and economic policies. It is commonplace to associate high infant mortality, school dropout rates, criminality, drug abuse, and most other indices of social dysfunction with African-American, Native-American, Hispanic, and other groups.4 3 Even among the “model minorities”, Asians and Pacific Islanders, groups of new immigrants as well as their assimilated relatives have shown increase in rates of many health problems like HIV which are in part attributed to their status as non majority people in the U.S.44 Racism is a significant, if not a primary, cause of this disproportionate level of social deterioration among communities of color. While the dynamics o f racism have often been studied from a macro-perspective, comparing the effects of race discrimination on particular ethnic groups vis-a-vis society at large, the differential effects of racism on women versus men of color has not been give due attention. To understand adequately any analysis of the combined effects of racism, sexism, and violence, a consideration of gender-based tension within communities of men and women of color, separate from and related to the predominant white society, is required.4 5 There are many stereotypes about women of color which affect not only our understanding of them as women, but also particularly our analysis of and sensitivity to 159 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. them with regard to violence. For example, many portrayals of women of color espouse their inherent strengths as historical, matriarchal heads of households.4 6 While this stereotype of women o f color may be undisputed, such attributions do not mean that all women of color are therefore empowered and supported in their various roles within their ethnic communities. For example, for women of color who are experiencing domestic violence, the implicit community and societal expectation to be strong and continue to care for themselves and their families results in their denying not only the actual existence of battering in their lives, but the extent and nature of the abuse. A Korean woman was repeatedly punched around her head and face by her husband. She reported that she used cosmetics extensively each day when she went to mass with her husband, in order to assure protection of her own, as well as her husband’s dignity among their church and neighborhood friends. When she went to work as a typist in a white business, she w'as especially careful not to disclose evidence of her abuse, in order to protect both herself and her husband from her co-workers’ judgements that “there was something wrong with Korean people.4' In addition, while public policymakers are concerned about the crime rate in this country, many leaders in cities where communities are predominately communities of color are becoming increasingly concerned about the profile of those convicted of crimes, i.e., young boys and men of color. The predominance of men o f color in correctional facilities (close to ninety percent of the penal population in some cities) has polarized most everyone. While most public health officials are reluctant to discuss it publicly, there is a rising belief that men of color are inherently problematic and socially deviant.4 8 160 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. There are no equally concerned dialogues about how women o f color continue to be victims of crime more often than white women and about the disparate treatment they receive from the health care system. For instance, for a battered woman of color who experiences violence at the hands of a man of color from her own ethnic group, a complex and troublesome dynamic is established that is both enhanced and compromised by the woman’s relationship to her community. She is battered by another member of her ethnic community whose culture is vulnerable to historical misunderstanding and extinction, by society at large. For the battered woman, this means that she may be discriminated against in her attempt to secure services while at the same time feeling protective o f her batterer, who might also be unjustly treated by such social institutions as the police and the judicial system.4 9 Most battered women of color are acutely aware of how hospitals discriminate against men of color and the ways men of color are more readily labeled deviant then white men. For battered women of color, seeking help for the abuse they are experiencing always requires a tenuous balance between care for and loyalty to themselves, their batterers, and their communities. The situation is further complicated by the fact that communities of color have prioritized the problems that plague their communities. The particular concerns of women typically do not emerge at the top of the list. One health care worker commented: “The most dangerous consequence for battered women of color is that they are often entrapped by loyalties to community and thus remain in the confines of violent and abusive households.”5 0 161 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Women of color who identify themselves as activists, feminists, and organizers within the battered women’s movement face an additional barrier among their feminist peers when raising issues related to particular dynamics of violence and race/ethnicity. They have challenged the long-standing belief of many white feminists that sexism is the primary, if not the only, cause of women’s oppression. As Davis states: In a reform movement which as had such a significant impact on the values, behaviors, and subsequent policies regarding women and violence, the reluctance or inability to integrate an understanding of violence against women with other forms of oppression (such as racism, classism) in addition to sexism has been disappointing.5 1 Our understanding of women of color who experience violence must be considered against the cultural backdrop of their racial and ethnic communities; within the framework of institutional responses that are historically based in racism and other prejudices; and against the background of the feminist agenda. In the end, for health care policy to be truly effective, especially in addressing violence against women, we must take a truly plural approach to health care policy. It is in this context that in the following subsections the particular influence, concerns, and barriers to the health care system in dealing with female victims of violence among the African-American community, the Native-American community, the Hispanic community, and the Asian/Pacific Islander community are examined. In addition, the specific health concerns for older women who again are victims of violence are discussed. Similar to the last chapter, this chapter focuses on similarities of experiences in each community. In doing this, the intention is not to undermine or obscure the uniqueness of each specific population within each group. 162 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 6 AFRICAN-AMERICAN WOMEN EXPERIENCE VIOLENCE Yolanda is a forty-six-year old who receives primary health care from a neighborhood health clinic. She uses the services of the walk-in clinic two or more times each month, complaining of discomfort, sleeplessness and fatigue. Yolanda never mentions that her boyfriend abuses her, but her clinic visits correspond directly with the pattern of his alcohol binges. The staff of the clinic knows about her boyfriend’s mistreatment, because he sometimes comes to the clinic drunk and will threaten her if she does not leave with him. The staff of the clinic never responds to the abuse. Not even to refer Yolanda to other agencies that deal with violence.5 2 Violence is an enormous life stressor and significant health risk for many African- American women. In fact, there is one estimate that nearly 50 percent of African- American women live in a state of emotional distress, which takes a tremendous toll on their overall health.5 3 According to the Office of Minority Women’s Health5 4 , violence is only one obstacle that African-American women face. If a woman is just trying to survive, it is highly unlikely that she will use the health care system as a preventive mechanism. It is more likely that she will enter the system after a crisis has occurred. One of the problems with current health policy is that it is not designed to aid African-American women in maintaining a healthy existence. 163 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. African-American women live in multiple jeopardies as they contend with issues of gender, race and class. They may encounter gender discrimination both within and outside their communities; they may experience racism from nurses as well as doctors. The combined influence of gender and race broadly impacts the personal treatment an African-American woman who as been a victim o f violence.5 5 Data indicate that African-American women must contend with abuse at the hands of spouses, partners, and/or family members on a daily basis. The dramatic finding that battering is a background factor in half o f the suicide attempts by African-American women raises a number of questions about the special link of pattern abuse and self destructive behaviors in communities that are economically marginal or where discrimination is a barrier to access. Public health agencies along with law enforcement have not successfully addressed this problem. Most African-American feminist scholars believe that the white patriarchy has created a culture where African-American women as well as men are not supposed to be well. “Wellness is a white luxury.”5 6 African-American women are particularly dependent for support on indigenous networks of family and friends as buffers during crises. Yet it is precisely from these support networks that the aggressor tries to isolate his victims. Suicidality may also reflect the dilemma experienced by many minority women about using criminal justice resources, even where self-protection is involved. Conversely, it may reflect the unresponsiveness of police officers that justify low levels of protection with the argument that violence is normal among minority groups, adding to a woman’s sense that nothing can be done. 164 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Minimizing abuse in African-American communities has been a significant barrier to its being recognized as a serious health problem. When examining domestic violence in African-American communities, for example, there are many other factors that come into play when creating health policy. Domestic violence cannot be the sole focus. One must look at poverty, education, and access to health care as well as the larger issue of how African-American women are perceived from within their own community. Stereotypes of African-American women overshadow all areas of health policy. They are perceived by African-American men and the larger white population as the strong, unbending matriarch who keeps the family together. It is quite obvious when looking at actual data that African-American families do not stay together in the dominant “legal” sense. The perception that the African-American woman is the domineering figure in a relationship is also a barrier to her receiving proper medical care if she is a victim of abuse. Data indicate that she is just as likely to be beaten and raped as white women yet she is much less likely to receive help.5 7 ff we examine the social factors that contribute to an African-American woman’s victimization, the figures are quite telling. In 1996, African-American women were more likely than all other categories of women except Native-American women to be living in a state of poverty (33 versus 12 percent)5 8 and to have less than twelve years of education (again except Native women)(24 versus 14 percent). Employment rates for African- American women are slightly lower than for all other categories (except Native women)(67 versus 69 percent.5 9 165 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Health care access for African-American women is also a critical component in her receiving help. It is quite telling that three times as many African-American women compared to all other women use the emergency room as their usual source of care (approximately 14 percent). Out of this 14 percent approximately 88 percent are victims of violence. This percentage could be higher or lower due to the fact that much of the violence is not reported.6 0 Health insurance is another significant barrier preventing victims of violence from receiving adequate care. African-American women (ages 18 to 64) are more likely than any other category of women (excluding Native-American women) to be uninsured (17 versus 15 percent) and to lack a regular source of care (22 versus 20 percent). One in five African-American women rely on Medicaid for their health. In addition, African- American women are more likely to be dissatisfied with the care they receive (15 versus 10 percent)6 1 The criminal justice system is a key component for African-American women to receive adequate health assistance if she has been battered, assaulted, or raped. Yet every study to date indicates that the existence of race bias and gender bias prevents African- American women from receiving this aid. Studies tell us that African-American men accused of raping white women, for example, are more likely to be arrested, indicted, tried, convicted and eventually incarcerated. Within anti-racist politics, this is routinely articulated as discrimination against African-American men. What is never articulated is that it is also discrimination against African-American women. A recent study in Dallas, Texas revealed that the average sentence given to the rapist of a African-American woman is two years, the 166 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. sentence given to the rapist o f a Hispanic is five years, and the sentence given to the rapist of a white woman is ten years.6 2 Interviews with jurors reveai that the low conviction rate of men accused of raping African-American women is based on on-going sexual stereotypes about African- American women. An example of this was a 1989 acquittal of a rapist of a twelve-year- old African-American girl. One juror said “a girl that age from that neighborhood probably wasn’t a virgin anyway.” Another juror said about African-American complainants: “Negroes have a way of coloring their stories. You can’t believe everything they say.”6 3 To date there has been no national study regarding African- American women who have been battered, yet several studies exist out of the Department o f Justice on battered white women. The inherent bias of the judicial system toward African-American women parallels the inherent bias of the medical system. One study of battered African- American women using the public health system indicated that nurses, doctors, and other workers whom the women encounter knew of the abuse yet never bothered to directly ask the women so they could be referred to other assistance programs. According to the New York Times Women’s Health Report in 1997, African- American women who were victims o f violence waited six times longer for emergency help than any other category of women. They also were two times as likely to be sent home that same day with their abuser with no protection and no follow-up by health professionals.6 4 Nearly 80 percent of African-American women on public assistance currently suffer from domestic abuse or are survivors who left their abusers.6 5 Groups such as the 167 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. National Black Women’s Health Project are actively lobbying states to implement the optional Family Violence Amendment in their welfare plans in order to protect and assist survivors who depend on welfare. The most important provisions of this Amendment are screening applicants for current or past domestic violence and referring women to counseling and support services. The Health Project is also working on federal mandates which would require public health workers to screen for abuse and offer treatment options for these women. Adequate medical treatment is crucial for victims. It can save lives and in the long run save money spent on public health care in areas of illness related to the abuse. One o f the most important proposals by the Black Women’s Health Project is for the federal government to broaden its definition of health care institutions. A “health institution would include: shelters, informal African-American women’s counseling groups and all of mental health services — parts of which are not currently included in national health care proposals.”6 6 Overall, violence is a grave problem facing African-American women, one that prevents health. Eliminating the destruction of violence is a monumental task. However, expanding the debate to be more inclusive is a start. Specific issues African-American women encounter are key for successful health policy. Since the vast majority of violent crimes against all women are intra-racial, this means that white women, too, are injured by the current one-dimensional, traditional bio-medical approach to health care policy. 168 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 7 NATIVE-AMERICAN WOMEN EXPERIENCING VIOLENCE In one Midwestern city, and Indian woman stated that when she saw her husband in court the morning after a battering incident, he looked just as bad as she did, with black eyes and bruises about his face. Feeling pity for him, she refused to testify, and upon release he told her of being beaten by policy while being transported between the jail and the courthouse.6 7 According to the U.S. Bureau of Census, one-third of American Indians live on federal Indian reservations; the remainder live in off-reservation rural areas or cities, with significant migration between them.6 8 To date, the problem of violence against women in these communities has received little attention by health care policymakers. As stated in the last chapter, it is important when health care policymakers address health issues, especially violence against Native women, to highlight important background information regarding Native-Americans in general in order to understand the scope of the problem. There are 556 federally recognized American Indian and Alaska native tribes. 23 tribes have state recognition only; numerous others have neither federal nor state recognition. In 1997 approximately 209 North American Indian languages were still spoken, roughly half the number that existed some 500 years earlier. Nearly 80 percent of these languages face extinction within a single lifetime because they are spoken by only a few o f the oldest persons in the community.6 9 Even though violence among Native-Americans has received little attention, 169 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. scholars suggest that there is a high association of violence with child abuse, alcohol use, suicide, and homicide.7 0 Indeed, further research is needed to determine the statistical significance of these associations. Social and religious practices, a greater balance of power between men and women, and the role of women central to family organization in pre-reservation societies that no longer exist, were a great protector against violence.Com m unity and family destruction brought on by forced change, changes in traditional marriage systems and social controls, and constant economic and subsistence deprivation likely were and are 72 risk factors for violence against these women. Today approximately 75 percent of female Native-American homicide victims were killed by someone they knew; almost one-third are killed by family members. Among all U.S. female homicide victims 65 percent were killed by someone they knew.7 3 Little reliable data exist on the incidence or prevalence of violence among American Indian populations. The 1985 National Family Violence Resurvey determined one-year prevalence rates in the general population. In this survey, 15 percent of 204 American Indian couples reported violence in their marital relationship; seven percent of Indian couples in this same study reported severe violence compared to 14 percent and five and one-half percent, respectively, among their White counterparts. American Indians in this sample were employed to the same extent as Whites, but were more likely to be rural blue collar and have a lower income. Age, feeling stressed, and alcohol use predicted couple violence among American Indians.7 4 Interestingly, this survey obtained no information on tribal affiliation or residence, specifically whether the person resides on a reservation. Data were analyzed 170 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. on American Indian married/co habiting couples only. “Violence” was limited to a range of physical behaviors. There was no representation of persons who did not have telephones or access to telephones, or non-English speakers.7 5 Initial response to this problem assumed the form of grassroots efforts in the last several decades to locate shelters on Indian reservations. The first shelter on an Indian reservation was opened in 1977 by the White Buffalo Calf Women’s Society of the Rosebud reservation. There are approximately 15 Indian-specific shelters, which are primarily reservation-based.7 6 Community-based American Indian intervention/prevention programs are based on the philosophy that violence was not a traditional or common occurrence prior to European contact 500 years ago and subsequent colonization of North and South America.7 7 In 1995 the Department of Justice began funding STOP violence against women grants in American Indian communities. These grants are used by social workers, health care workers, and academics for work on alternative ways to end violence against Native-American women. A total of 98 programs have been funded for 1998. Poverty among Native-American women who have experienced violence is extremely high. In this survey, 69 percent of Native women seeking emergency health services on reservations in 1997 were unemployed, and had family incomes less than 10,000. In addition, 50 percent of the women had children at home; and many of these 78 women were pregnant. In addition to poverty, most of the female victims were involved in a situation where alcohol played a part in the violence. Almost all Native women using emergency 171 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. facilities on reservations in 1997 reported their husbands or boyfriends were drinking at the time of the most violent incident; for that matter most of the women also were drinking at the time.7 9 Almost all o f the victims reported feeling more depressed and stressed by the violence. Many of the women report having serious suicidal thoughts as a result of the violence. In one Indian Health Survey, thirty-one percent of the women felt their health was much worse after the violence. Thirty-eight percent of the women felt that substance sn use (drugs and alcohol) worsened after beatings began. How does the 1994 Violence Against Women Act apply to Native women living on reservations? Policymakers believe that only public health care workers can initiate recourse against Native men who abuse their partners. This can create a complicated maze of bureaucracy for the Native women and perhaps make the violence worse.8 1 Most Native feminists believe that non-traditional approaches to solving the problem are the only answers. Grassroots efforts have been made to re-establish equity among Native women and men that was destroyed by European patriarchy. These involve non-traditional medical approaches to healing, alcohol treatment programs, and communal counseling between women and men. These programs receive funding under the current health care initiatives.8 2 Non-traditional methods of healing could be beneficial to non-native women. For this to occur, the specific needs of Native women need to be part of the health care debate. The ideal solutions to solving violence need to encompass more than the traditional white ways of achieving health that often times fail. 172 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 8 HISPANIC WOMEN EXPERIENCE VIOLENCE One evening after work, a co-worker gave Maria, a recent immigrant, a ride home. En route, a police officer pulled them off the road and into a vacant lot. The officer informed them that the driver was suspected of drug trafficking. He commanded the driver to put his hands on his head, remain in the car, and not to move. Subsequently, the officer instructed Maria to exit the care and follow him to his patrol car. She did so. Once inside the patrol car, the police officer told Maria that he knew that she was undocumented and that if she did not do as he ordered, she would be deported. He then proceeded to sexually assault her during the following fifteen minutes. Before allowing her to return to the car, he warned her once again. I met Maria in the emergency room. She refused to report the assault and initially did not tell me who assaulted her. Maria is a very strong woman and her hesitation to report did not come from lack of desire to do so, but from fear. Maria feared that she, an undocumented woman in this country, would not be believed, that she, instead o f the perpetrator, would be penalized for her victimization.8 3 Hispanic survivors of violence experience traumas that affect their lives drastically. Whether speaking of undocumented Hispanics or those here with permission, violence is a major health obstacle in many o f their lives. As can be seen by the above example, the violence that these women experience is not committed solely by their partners. In many instances the very people who are supposedly here to protect them perpetrate it: law enforcement officials. 173 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. In addition to law enforcement, Hispanics often experience neglect from a health system that may recognize violence but not report it or may not be sensitive to violence that has occurred. Regardless of documentation, Hispanics face a society that does not understand the many dimensions of their cultures. Hispanics are often viewed as less than equal members of society. These attitudes are quite apparent in public health facilities where, as stated above, discrimination and overall neglect runs rampant. One anonymous physician from USC County Hospital commented, “All these Mexican women are the same, they accept abuse in their families and don’t want any outside interference from a ‘Gringo’ like myself.”8 4 This institutional racism and failure to help make it very difficult for Hispanics to have faith that justice can be achieved. Sometimes it is these very attitudes that perpetuate violence. When one is dehumanized, as many Hispanic women, it is easier for them to become victims. There have been few research studies investigating violence in this community. Also, there have been very few public surveys o f Hispanics who experience violence. The few that do exist indicate that Hispanics and non-Hispanics believe violence, such as rape and domestic violence, is more prevalent in their communities. Many non-Hispanic women believe that Hispanic men are more likely to beat their wives or partners than white men are. This myth can be very restricting.8 5 Some Hispanic women, according to USC County Medical Center, believe this myth and are ashamed and afraid to seek help.8 6 Contrary to these beliefs, domestic violence is not more prevalent among Hispanics; again domestic violence has no boundaries. 174 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. However, a Hispanic perception of what constitutes abuse is very different from an Anglo woman’s perceptions. According to one study Hispanics are generally more tolerant towards wife abuse than Anglo women. That is, such acts, as hitting or verbal abuse had to occur more frequently to be considered abusive by Hispanics. Furthermore, Hispanics have a slightly different perception of what constitutes wife abuse. Some acts perceived as abusive by Anglo women are not considered as abusive by Hispanics; they included verbal abuse and failure to provide adequate food and shelter. The perception of acts considered being “physical abuse” were basically the same for Hispanics and Anglo women. For acts considered being “emotional abuse,” Hispanics showed more tolerance than Anglo women did.8 7 One of the most important cross-cultural differences between Hispanics and others is the victim’s response to physical abuse. Culture, family and religion are the major factors that affect the manner in which a Hispanic reacts to being battered.8 8 ft is essential that if we are to combat this problem that health care workers understand these factors as part of treatment. The family is the most important factor that enters into a Hispanic’s decision whether to leave or stay in the battering relationship. Hispanics report that they stay in the relationship because of their children and threats to family members. The reason most frequently given by Hispanics for going back to their spouse is “the children”. The Hispanic stays longer in a relationship with an abusive spouse before seeking assistance, due to pressure from their families and for the sake of their children.8 9 Also, Hispanics are hit more frequently in front o f other family members than are any other category of women. Hispanics left and came back to their spouses more times 175 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. than other groups o f women. Thus, it is important not to assume that because a Hispanic battered woman has asked for help, she may leave her home. In summary, when health care workers assist Hispanics, it is necessary to be aware o f the family roles, traditions, and expectations that are peculiar to the culture. The attitudes a woman’s culture holds towards sex roles will affect a woman’s health. Most studies indicate that “a Hispanic is likely to be especially sensitive and react to criticism or perceived non-acceptance of herself, her family, culture, language, husband, economic situations, level of education, consciousness, and or degree of dependence/independence.”9 0 Similar to other women of color, Hispanics face racial prejudice that makes family and community increase in importance. Catholicism, the predominant religious experience for Hispanics, considers the maintenance of the family unit to be of primary importance, even at the expense of the woman’s well being. This also can affect a woman’s reaction to being abused. A higher percentage of Hispanics surveyed had sought assistance form religious organizations before coming to the hospital. In addition, some Hispanics practice “curanderismo,” the art and science of using herbs, prayers, and rituals to cure physical, spiritual, and emotional ills. Other factors that may affect the reaction of Hispanics to abuse are their immigrant status and their weak knowledge of the English language. Being of immigrant status is stressful, and if a woman is in this country illegally, this may further inhibit her from seeking help. The focus on recent immigrants represents an extreme example o f the attitudes and fears that exist for Hispanics as a group. Latin women live with many forms of “isms”, including, but not limited to, racism, classism, and sexism. These 176 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. “isms” are intensified for immigrants and undocumented women who experience violence. Immigrants often leave family and friends - their major sources of psychological and financial support - behind. Intervention could be focused on assisting these individuals to become familiar with resources in the community and to develop support groups, such as the churches.9 1 To a certain extent, the availability o f these resources is scarce. Health care workers need to know the risks facing both legal and illegal women. When congress passed the 1994 Violence Against Women Act (VAWA), there were virtually no provisions to protect immigrant women. Not only was a Hispanic risking her own status here in the U.S. but her entire family’s if she was encouraged by health care workers to report the abuse. Health care workers themselves were and still are placing these women in jeopardy if they follow suggestions of this Act and report the abuse on their own. And health care workers often times simply do not want to get involved 9 2 A woman who is here legally due to a spouse is also in a risky situation if an abusive partner threatens the victim with deportation if she reports him. To a great extent even with protective measures added to the VAWA, these risks are real. In 1995, Congress amended the VAWA provisions of the immigration law that applied to petitions to classify aliens as relatives eligible to apply for permanent resident status, suspension of deportation, and the evidence necessary to make these applications. Under these Amendments, “certain alien spouses who were abused or whose children were abused by the alien’s citizen or resident spouse can file the petition necessary to initiate their applications for legal status without the abusive spouse’s cooperation.”9 3 177 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. However, in addition to proving the abuse, these immigrant women must demonstrate several additional factors. The most difficult and burdensome requirement is that they must demonstrate, in addition to the abuse, that their deportation would result in extreme hardship to themselves or their children. These women must further demonstrate that they are: 1) Persons of good moral character, 2) They entered into their marriages in “good faith”; 3) They are currently residing in the United States and at some time resided with the abusive U.S. citizen or legal permanent resident in the United States; 4) The abuse of the spouse or spouse’s child happened sometime during the marriage; 5) They are otherwise eligible for immediate relative or preference classification.9 4 The suspension of deportation law was also amended by the addition of a new category of aliens eligible to suspend deportation and change their status to legal permanent resident. Immigrants who are battered or subjected to extreme cruelty by U.S. citizens or legal permanent resident spouses and aliens who are the parents of children who were battered or subjected to extreme cruelty by the U.S. citizen or legal permanent resident parents are included. The immigrant must meet the above criteria in addition to demonstrating that she fits into a recognized group of abused. A suspension applicant immigrant must also show that deportation would result in extreme hardship to herself or her child. Furthermore, she must show that (1) She has been physically present in the United States for a continuous period of a least three years; (2) The abuse took place in the United States; 178 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. (3) She is currently a person of good moral character and has been for the three- year period preceding her application; (4) She is a deportable immigrant, but not deportable on certain serious grounds.9 5 After the passage of these amendments, the citizen or resident spouse still maintains control over the alien spouse’s immigration status, but with some limited exceptions, tf the alien spouse can demonstrate that she or her child was abused and she meets the extreme hardship and additional criteria, she may be able to pursue her legal status independently. However, this approach, while being of assistance to some individuals, does not break the control of spousal domination even when a spouse is engaged in battering or extreme cruelty.9 6 As one can imagine, the bureaucracy that exists to initiate these protections is extensive. In fact, as of October 1997, the INS had not decided how to process the applications that have been filed therefore; none of these women are protected. Bureaucratic obstacles are not the only ones a woman faces. Inability to speak English provides its own constraints. English-speaking nurse advocates need to be aware of possible language difficulties. Even though a woman may be bilingual, it is difficult to express oneself in a second language while under stress. In addition, poverty, unemployment and social isolation are risk factors for spousal abuse in Hispanic families, just as they are in non-Hispanic families. Very recent studies have also found links betw'een recent immigration, loss of social support, low SES and depression among Hispanics, and more specifically among Mexican American women. It is very difficult sometimes impossible for these women to seek help on their own. To obtain legal support most of the time is not an option.9 7 179 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. These serious issues must be addressed by policymakers, health care professionals, and all social service agencies if we seriously intend to begin to reduce the problem o f violence against women. Again, the specific advances that can be made for this group of women will help in eliminating inequities that exist amongst all women in health care. 9 ASIAN/PACIFIC ISLANDER AMERICAN WOMEN EXPERIENCE VIOLENCE I would feel worse to complain and confront. I haven’t gotten to the point where I could complain and not feel bad about it... I worry too much on what effect it would have on the guy who had to listen to it' I’ve said stuff that I thought shouldn’t be heard or anything-and then I just feel so AWFUL afterwards. It didn’t make me feel any better. So it’s better if I don’t say {anything} - but maybe, like family stuff- if someone doesn’t do something they should have, maybe if I could learn to handle it - then everybody would know exactly where I stand. But you know, we were taught not to speak badly of anyone. I just feel terrible afterwards. It’s not worth it! We tried it a couple of times as a family. But I guess I REALLY didn’t want to do it - to sit there and confront. So we never did. Now, I can’t walk!9 8 As stated throughout this chapter, violence against women transcends all races and ethnicities. Another example of neglecting marginalized groups in health policymaking is the problem of violence against women in Asian communities. There is a discernible gap in the literature about the needs of Asian women who are victims of violence, especially with regard to recently arrive immigrant or refugee women. 180 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Several structural and cultural constraints that inhibit Asian women victims from securing help from mainstream health agencies. Asian communities are many — with diverse traditions and multiple languages. In many ways it is very difficult to generalize about this group of women when it comes to violence. Yet there are some similarities of experiences. As with the other ethnic women discussed in this chapter, the lack of exploring violence among Asian-American women to a great extent reflects the racial bias that has characterized traditional research on women victims. However, there are inherent difficulties in obtaining reliable data on violence in Asian families and communities. There are several reasons for this: first, because of the multitude of Asian languages and cultures, it is difficult to conduct an inclusive study." Researchers are often confronted with numerous obstacles when attempting to deal with the problem. The most apparent again are the stereotypes of Asians. This is especially true when we look at the dominant culture’s view of Asians as the “model minority” which furthers the mythical notion that female violence cannot be a problem in this community.1 0 0 Even though Asian women are grossly underrepresented in studies of women, it is estimated that, like the other groups discussed above, violence against women occurs just as frequently in Asian populations as in the general population. The scant research which indicates Asian women who are battered are less likely than other women from other racial and ethnic groups to report the abuse and those who do wait until there is a crisis to do so. This lack of reporting has been attributed to several factors: The Pacific Asian family’s traditional patriarchal system and the attendant belief in the supremacy of the male; the socialization goals and processes which favor the family 181 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. and community over the individual; the cultural emphasis on silent suffering versus open communication of needs and feelings; and the enormous adjustment pressures which test the limits of immigrants’ and refugees’ survival skills. Cultural norms and values directly or indirectly sanction abuse against women and tend to minimize it as a problem in the community.1 0 1 In her comparative study of battered Asian women and battered women from other racial and ethnic groups (including White, African-American, Hispanic and Hispanic women), Bhaumik found that Asian women were “significantly more patriarchal in their attitudes, identified more with their ethnic groups, experienced significantly less marital equality, had less social support, and suffered from more severe battering before seeking help from a shelter.1 0 2 In an earlier study on Korean battered wives, Sung Yim found that while length of time in the U.S. lessened adherence to traditional patriarchal attitudes among Korean men, “even after six years of residence in the U.S., Korean men were still substantially more traditional than white American 77 I 03 men. In addition to the above, there are a number of cultural dilemmas that Asian women confront in the U.S. Issues like collective or familial interest versus individual interest and self-control vs. self-expression are two examples.1 0 4 Some of these cultural norms deter women from seeking help. Sometimes it is a cultural norm that if a woman disobeys her spouse, it is acceptable for him to discipline her. Because of a multitude of issues, many Asian women victims need specialized health services that they currently do not receive. These needs are also not part of current federal proposals. For example, one of the priorities of Asian health activists is to make care culturally sensitive. Most policymakers believe this is fiscally impossible. 182 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Asian health activist, like Native-American health activists, however, believe if we expand our scope and approach to health, involving more non-traditional methods of healing this is possible. For example, if we included shelters for battered women under the umbrella of health care, many argue it would be cost effective. More shelters could be built in communities where social workers, physicians, and nurses were on site. Because they would be from the community could speak the language and understand cultural norms. One experimental program exists in San Francisco: It’s called the Multilingual Access Model...We have on- call staff who are bilingual advocates... all of them are bilingual in different languages.. .There’s like 9 or 10 languages...There are also two language banks in San Francisco.1 0 5 These culturally sensitive programs receive little financial support from state governments and the federal government. Lack of regulations from the top allows men to abuse programs like the above. For example, some men have used culture as a justification for battering. This “cultural defense argument” often is used in the court of law.1 0 6 A Chinese man received five years probation in New York City for beating his wife to death with a hammer; in the case, the judge ruled in favor o f a cultural defense argument.1 0 7 The above Chen case had a tremendous impact on the Asian community. The health care worker who treated the battered wife was not required to testify against the abuser in this case. This basically sent Asian men the message that they could do anything and get away with it using the cultural defense argument. 183 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. The 1994 Violence Against Women ACT (VAWA) also does not require medical personnel to report abuse nor does it require them to testify of a woman takes legal action. The VAWA only suggests the proper steps medical personnel should take in abuse cases. The Act also states nothing about the role culture can play in contributing to violence against women and it certainly does not outline protections for women whose abusers use the cultural defense argument.1 0 8 The federal government needs to formulate regulations so that cultural sensitivity is of benefit to the victim. Health care workers also should be required to play an active role in assisting the victim medically and legally. In addition, hospitals also need to develop programs that are culturally sensitive and protect the Asian woman. This is extremely important for it has been found that an Asian woman is much less likely than any other group to call a hotline for help. She is more likely to read literature from medical institutions and attend face-to-face programs led by Asian medical professionals that deal with violence in the family. Hospitals also need to work with Asian advocacy groups. There is a great need to explain to Asian women, especially refugee women, how the system works. As among Hispanic women, the batterers often threaten immigrant women by telling them they will be deported if they leave or seek help. Medical institutions that receive a great deal of trust from the Asian communities need to prevent these misconceptions.1 0 9 In order to initiate the above, medical professionals need to understand the laws. The VAWA, as stated in the last section, allows undocumented battered women to obtain lawful permanent resident status through self-petitioning. Again, as of October 1997, the INS had not begun processing these petitions. Two years have passed since President 184 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Clinton signed these appropriate Amendments to the VAWA. Indeed, there are avenues of support for immigrant women in general. However, the government needs to begin to implement these protections. Women’s health care activists believe this will only occur if health care professionals lobbying the government, highlighting the seriousness of this problem. Asian women and their concerns cannot be left out of the policy equation. Again, their health affects the health of all communities o f women. 10 ELDER ABUSE The National Center on Elder Abuse (NCEA) reports an increase of 150 percent in state-reported elder abuse nationwide over a 10-year period, from 1986 to 1996. However, because abuse and neglect is still largely hidden under the shroud of family and personal secrecy, it is grossly underreported. Because of this underreporting, the national prevalence o f incidence of elder abuse is not known. In 1997, NCEA estimated that 2.1 million older persons, about 67.3 percent older women, were abused, neglected, or exploited.1 1 0 The median age of elder abuse victims was 77.9 years, according to 1996 data excluded self-neglecting elders. In 1996,66.4 percent of the victims of domestic elder abuse were white, while 18.7 percent were African American. In addition, Hispanic elders accounted for 10.4 percent of domestic elder abuse victims in the same year, but the proportions of Native Americans and Asian Americans/Pacific Islanders were each less than 1 percent.1 1 1 185 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. To gain a fuller understanding of this problem, the Administration on Aging and the Administration for Children and Families jointly funded NCEA to conduct the nation’s first elder abuse incidence study. This study, scheduled for completion in 1998, will provide estimates of the national incidence o f abuse, neglect and exploitation, of older men and women in domestic settings and information about the characteristics of domestic elder abuse victims, including self-neglecting elders. In recent years, awareness has grown of the special problems facing older battered women and men which has resulted in special laws protecting elders from abuse in all fifty states. There are three basic categories of elder abuse: domestic, institutional, and self-neglect. Domestic elder abuse refers to maltreatment of an older person residing in his/her own home or the home of a caregiver. Institutional abuse refers to the maltreatment of an older person residing in a residential facility for older persons, for example, a nursing home, board and care home, foster home, or group home. Self neglect refers to the conduct of an older person living alone which threatens his/her own health or safety (see figure 4.2).1 1 2 Women who are battered in older age face many of the same problems as younger Figure 4.2. Types of Elder Abuse ^Emotional Sexual Physical Unknown Other Neglect _ _ _ _ _ _ _ _ Financial National Center for Elder Abuse; "Statistics-Scries 1, 1997” 186 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. adult women struggling with abuse. In addition, they may be physically frail and dependent on the batterer for daily care. The nearest shelter for battered women may not be set up to accommodate their physical abilities. They may be fearful that if they seek help to end the abuse they will find themselves forced into a nursing home. Ef the batterer is a spouse with whom they have lived for many years, it may be especially difficult to contemplate separation or ending the relationship. If the batterer is an adult child, calling for help from a social service agency or the police may be simply unimaginable. Battered women’s activists are becoming increasingly concerned about older women’s ability to respond to battered women. E n addition to the challenge of making sure that shelter services are physically accessible, there are conflicting mandates for those who serve older battered women. Most elder abuse laws are similar to child abuse laws in that they require service providers to report instances of abuse to public health authorities or social service agencies. This approach to domestic violence against older women may conflict with the deep commitment of the battered women’s movement to empowering victims of violence and protecting their right to privacy and confidentiality. Just as the battered women’s movement has from its earliest days turned to battered women themselves in learning how to respond to domestic violence, so will activists and elder service providers want to listen to older battered women in working out how to meet the challenge of ending violence against elders. 1 1 3 E n all states but eight, certain types of professionals are designated as mandatory reporters of domestic elder abuse and are required by law to report suspected cases of abuse, neglect, and exploitation. In 1996, 22.5 percent of all domestic elder abuse reports came from physicians and other health care professionals, while another 15.1 percent 187 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. came from service providers (for example, the staff of agencies providing services to the elderly) (see figure 4.3).1 1 4 State legislatures in all 50 states have passed some form o f legislation (for example, elder abuse, adult protective services, domestic violence laws, mental health commitment laws) that authorizes the state to protect and provide services to vulnerable, incapacitated, or disabled adults. In more than three-quarters of the states, the services are provided through the state social service department (adult protective services). In the remaining states, the State Units on Aging have the major responsibility. Agencies receive and screen calls for potential seriousness. Some states operate hotlines 24 hours a day, 7 days a week. The agency keeps information received in reports of suspected abuse confidential. If mistreatment is suspected, an investigation is conducted (in cases o f an emergency usually within 24 hours). On the basis of a comprehensive assessment, a care plan is developed which might involved, for example, obtaining a medical assessment of the 188 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. iEjgiiri^ :LtG % S SOURCE: National Center on Elder Abuse. “Statistics -Series 3 1997” victim; admitting the victim to the hospital; assisting the victim in obtaining medication; arranging for home health care or housekeeping services; calling the policy; or referring the case to the prosecuting attorney. The older woman has the right to refuse services offered by Protective Services, unless he or she has been declared incapacitated by the L15 court. Older women’s organizations, such as the Older Women’s League, have lobbied the government to dedicate much need resources to protect all elders from abuse. Currently, the Vulnerable Elder Rights Protection Activities, Title VTI, last reauthorized in 1992, provides states with discretion in setting priorities for spending monies. OWL would like the federal government to regulate these programs more rigorously to make sure that prevention programs are carried through. For the most part, states have focused their elder abuse prevention activities in four areas: 189 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. professional training, for example, skill-building workshops for adult protective services personnel; workshops designed to introduce specific professional groups, for example, law enforcement, to aging and elder abuse issues; statewide conferences open to all service providers with an interest in elder abuse; and development of training manuals, videos, and other materials; coordination among state service systems and among service provider, for example, creation of elder abuse hotlines for reporting; formation of statewide coalitions and task forces; and creation of local multidisciplinary teams, coalitions, and task forces; technical assistance, for example development of policy manuals and protocols that outline the proper or preferred procedures; and public education, for example, development of elder abuse prevention curriculum for elementary and secondary students; and development and delivery of elder abuse prevention public education campaigns, including radio and television public service announcements, posters, flyers, and videos with training materials suitable for use with community groups.1 1 6 11 CONCLUSION: CHALLENGES FOR THE FUTURE The health care system remains the weakest link among the resources available to women who experience violence. In the next century, hopefully more feminists will challenge policymakers to improve the way health care is provided to survivors of violence. The crucial step is to present the issue on a multi-dimensional level, one that involves all women. This plural approach needs to emphasize the following: 1) Violence occurs in all communities of women vet it cannot be treated homogeneously. Many health care workers, policymakers and feminists themselves still believe the myths and stereotypes concerning women and 190 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. violence, some of which were outlined in this chapter. These need to be addressed and refuted. 2) Violence is not solely a sociai or familial problem. It needs to be viewed as a significant medical problem that needs specific medical intervention if we are to create health communities. 3) Sexist and paternalistic attitudes. As stated in chapter one, medicine has been criticized for patriarchal and sexist attitudes towards female patients. Education programs need to be developed for the medical community, which seek to eliminate these barriers to treatment for victims of violence. 4) Structure of the health care system. Fragmentation of the health care system separate from other social services has prevented various agencies from working together. fn 1985, former Surgeon General K.oop convened an unprecedented workshop on violence and health.1 1 ' This conference, which focused on the use of traditional public health tools to understand violence in epidemiological terms, marked a turning point in the involvement of public health officials with violence. Shelters for battered women had sprung up around the country during the 1970s, focusing the awareness of lawmakers, service providers, and researchers on the problems of women victimized by violence. Not until this historic meeting, however, did an articulated strategy emerge to address violence as a public health problem. This strategy encompassed prevention and intervention tools, which then were disseminated to the public health community through regional conferences. 191 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. A newly created National Center for Injury Prevention and Control within the Centers for Disease Control and Prevention quickly expanded its emphasis on deliberate interpersonal injury to provide leadership and support for research on a wide range of issues, including violence against women. All of this occurred in the 1980s. As the next century approaches, the implementation of the VAWA especially, when it is applicable to immigrant women who experience violence, has yet to occur. The Act’s focus fails to include issues of concern to diverse groups of women. A radical plural feminist model of health is sensitive to race and ethnicity. From this model’s perspective a broader approach to violence is necessary. The application of the VAWA, for example must intersect with health care policy and crime policy in the United States. The mechanisms exist to end violence; it is the application of them that need to be addressed. The evidence presented in this Chapter challenges the notion that violence against women can be addressed in a generic fashion. The data indicate that the concerns and ultimate solutions for ending violence are different depending upon race/ethnicity, and class. Addressing individual concerns can never occur until women have access to health care. Health insurance is the key stumbling block to access addressed next. 192 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. CHAPTER ENDNOTES S.B. Plichta, “Violence and Abuse: Implications for Women’s Health,” in ed. M.M. Falik and K.S. Collin Women’s Health: The Commonwealth Fund Survey (Baltimore: The Johns Hopkins University Press, 1996) 237-70. z D.K. Bohn, “Violence and Pregnancy: Implications for Practice,” Journal of Nurse- Midwifery 35 (2) (March/April, 1990) 86-98. 3 S.B. Plichta, “Violence and Abuse: Implications for Women’s Health.” 4 S.B. Plichta, “Violence and Abuse: Implications for Women’s Health.” 5 T.R. Miller, M.A Cohen, and B. Wierseman. Victim Costs and Consequences: A New Look (Washington, D.C., U.S. Department of Justice, National Institute of Justice, February 1996). 6 J. Abbott, R. Johnson, J. Koziol-McLain, et al, “Violence Against Women: Incidence and Prevalence in an Emergency Department Population,” Journal of the American Medical Association 273(22) (June 4, 1995) 1763-67. ' J. Zorza. “Women Battering: High Costs and the State of the Law,” Clearinghouse Review Special Issue (1994). 8 * Kimberle Williams Crenshaw. ‘T he Marginalization of Sexual Violence Against Black Women.” Harvard Law Review. Vol. 1, 1993, 7-11 . 9 Violent Crime Control: Law Enforcement Act of 1994, Pub. L., No. 103-322, 40701, 108 Stat. 1953 (Sept. 10, 1994). 1 0 U.S. Department of Health and Human Service, Public Health Service, Centers for Disease Control, National Center for Health Statistics. Healthy People 2000 Review 1996 DHHS Publication No. (PHS) 95-1256-1. 1 1 Sheryl Burt Ruzek, Virginia L. Olesen and Adele Clarke. Women’s Health: Complexities and Differences fColumbus: Ohio State University Press, 1997) 447. 1 2 Ruzek, Sheryl Burt, et al. Women’s Health: Complexities and Differences. 447-51. 1 3 Leslye Orloff, and Nancy Kelly. “A Look at the Violence Against Women Act and Gender-Related Political Asylum,” Violence Against Women. Vol. 1, No. 4, December 1995, 381-383. 1 4 Laura O’Toole, and Jessica R. Schiffman, eds. Gender Violence: Interdisciplinary Perspectives (New York: New York University Press, 1997) 424-25. 193 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 1 5 O’Toole, et. al. Gender Violence: Interdisciplinary Perspectives. 424-25. 1 6 Council on Ethical and Judicial Affairs. “Physicians and Domestic Violence: Ethical Considerations,” Journal of the American Medical Association 1992 267:3184-89. 1' The Violence Against Women Act helped to kink law enforcement agencies and health agencies in order to protect the female victims. The Department of Justice is now a key link in helping health agencies to evaluate the problem and work on solutions. 1 8 Lynn Weber, Tina Hancock, and Elizabeth Higginbotham. “Women, Power, and Mental Health,” in Ruzek et al. Women’s Health: Complexities and Differences 380-97. 1 9 Elizabeth Fee, and Nancy Krieger, eds. Women’s Health. Politics, and Power Essavs on Sex/Gender. Medicine, and Public Health (New York: Baywood Publishing Company, 1994) 285-87. 2 0 Office of Women’s Health, Department of Health and Human Services, Office of Women’s Health Report: Domestic Violence Facts. 1997. 2 1 Office of Women’s Health, Department of Health and Human Services, Office of Women’s Health Report: Domestic Violence Facts. 1997. C. Everett Koop, M.D., Former Surgeon General. “Topics for Our Times: Violence as A Major Public Health Issue,” American Journal of Public Health. January 1996, Vol. 86, No. I, 15. 23 Barbara Gerbert, Ph.D., Kathleen Johnston, BA, Don Caspers, MFA, Thomas Bleecker, Ph.D., Austen Woods, MA, and Amy Rosenbaum, BA. “Violence in Health Care Settings: A Qualitative Study,” Women in Health. Vol. 24(3) 1996, 2. 2 4 E. Lewin, and Virginia Olesen, eds. Women. Health and Healing: Towards a New Perspective (New York: Travistock Publications, 1985) chapters 1 and 2. 23 E. Rios. “Double Jeopardy. Cultural and Systemic Barriers Faced by the Hispanic Battered Woman,” Violence Against Women. Vol. 1 No. 4 December 1995, 385-92. 2 6 Adele Clarke, and Lora Bex Lembert. “You Can Be Safer, But....: Different Women, Many Violences,” in Ruzek et al. Women’s Health: Complexities and Differences. 473. 2 7 Helen Rodriguez-Trias. “Women’s Health, Women’s Lives, Women’s Rights,” American Journal of Public Health 82:663-64. 194 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 8 Office of Women’s Health, Department of Health and Human Services. Office of Women’s Health Report: Domestic Violence Fact Sheet, 1997. 2 9 The Boston Women’s Health Book Collective. Our Body. Ourselves for the New Century (New York: Simon & Schuster, 1998) 131-47. 3 0 A _ Helton, Judith McFarlane, and E. Anderson. “Battered and Pregnant: A Prevalence Study.” American Journal o f Public Health 77:1337-39. 1987. 3 1 Judith McFarlane. “Violence During Teen Pregnancy: Health Consequences for Mother and Child,” in Barrie Levey, ed. Dating Violence (Seattle: Seal Press, 1991) 136- 41. 32 L.E. Saltzman. “Battering During Pregnancy: A Role for Physicians,” Atlanta Medicine 1990 64:45-48. 3 3 The Boston Women’s Health Book Collective, Our Body. Ourselves for the New Century. 133. 3 4 Beth E. Richie, and Valli Kanuha. “Battered Women of Color in Public Health Care Systems: Racism, Sexism and Violence,” in Barbara Bair and Susan E. Cayleff, eds. Wings of Gauze: Women of Color and the Experience of Health and Illness (Detroit: Wayne State University Press, 1993) 288-300. 3 5 See Council on Ethical and Judicial Affairs. “ "Physicians and Domestic Violence: Ethical considerations.” Journal of the American Medical Association 1992 267:3190-93 and Council on Scientific Affairs. “Violence Against Women: Relevance for Medical Practitioners,” Journal of the American Medical Association 1992 267-3184-89. 3 6 See Anne H. Flitchraft. “Violence, Values, and Gender,” Journal of the American Medical Association 1992 267:3194-95 and Antonio Novello. “From the Surgeon General,” Journal of the American Medical Association 1992 267:3132. 3T Department of Justice. National Center for Prevention and Control. 1997 Cnme Prevention Report: Statistics on Violent Crime in the U.S. 38 Crenshaw, "The Marginalization of Sexual Violence Against Black Women,” 7-11. 3 9 Aileen C. Hernandez. National Women of Color Organizations: A Report to the Ford Foundation (New York: Ford Foundation, 1991). 4 0 Congressional Record. 104th Congress 2n d Session 142 Cong. Rec S 6026. 195 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 4 1 Linda Gordon. Heroes of Their Own Lives: The Politics and History of Family Violence in Boston, 1880-1960 (New York: Penguin Books, 1988) Introduction. 4 2 Richie, et al. c c Battered Women of Color in Public Health Care Systems: Racism, Sexism and Violence,” 290. 4 3 Perales, C. and L. Young, eds. Too Little Too Late: Dealing with the Health Needs of Women in Poverty (New York: Harrington Press, 1988)Introduction. 4 4 H. Chua-Eoan. “Strangers in Paradise,” Time April 1990 135:32-35. 4 5 Richie, et al. “Battered Women of Color in Public Health Care Systems: Racism, Sexism, and Violence,” 290. 46 B. Rudwick, A. Meier, and E. Rudwick, eds. Black Matriarchy: Myth or Reality (Belmont: Wadsworth Press, 1971). 4/ Beth Richie. “An Exploratory Study of the Link Between Gender Identity Development, Violence Against Women, and Crime Among African-American Battered W 7 omen,” Ph.D. dissertation, the Graduate School and University Center, City University o f New York, 1992. 4 8 H. Kurtz. “Jail City: Behind Bars with New York’s 20,000 Inmates,” New York Magazine April 23, 1990. 4 9 Richie, et al. tc Battered Women of Color in Public Health Care Systems: Racism, Sexism, and Violence,” 293-94. 5 0 Beth Richie. “Battered Black Women: A Challenge for the Black Community,” Black Scholar 1985 16:40-44. 5 1 Angela Davis. Violence Against Women and the Ongoing Challenge to Racism (New York: Kitchen Table Press, 1985) 58. 5 2 Richie, Ph.D. Dissertation, 34-8. 5 3 Nikki Franke. “African-American Women’s Health: The Effects of Disease and Chronic Life Stressors,” in Ruzek et al. Women’s Health: Complexities and Differences. 372. 5 4 Office of Minority Women’s Health. 1997 Report on Violence Against Women in the Black Community. 196 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 5 5 P. Reid. “Feminism v. Minority Group Identity.7 ’ Sex Roles 1984 10:247-55 and P. Reid, and L. Comas-Diaz, “Gender Ethnicity: Dual Perspectives,” Sex Roles 1990 22: 397-408. 5 6 Bel Hooks. Sisters of the Yam: Black Women and Self-Recovery (New York: South End Press, 1993). 5 7 Bylle Avery. ‘T he Health Status of Black Women,” in Ronald L. Braitwaite and Sandra E. Taylor, eds. Health Issues in the Black Community (San Francisco: Jossey- Bass, 1992)35-51. See Christine B. Hale. “A Demographic Profile of African-Americans,” Braitwaite et al. Health Issues in the Black Community 6-19; Lee, Philip R. and Carrol L. Estes. The Nation’s Health (Boston: Jones and Bartlett, 1990); and National Center for Health Statistics. 5 9 Lille-Blanton, Marshal, Janice Bowie, and Marguerite Ro. “African-American Women: Social Factors and the Use of Preventive Health Services,” in Marilyn M. Falik, Ph.D. and Karen Scott Collins, M.D. Women’s Health: The Commonwealth Fund Survey (Baltimore: John Hopkins University Press, 1996) 99-123. 6 0 Roberta E. Wyn, Richard Brown and Hongjian Yu. “Women’s Use o f Preventive Health Services,” in Falik et al. Women’s Health: The Commonwealth Fund Survey. 49- 76. 6 1 Roberta Wyn, et al. “Women’s Use of Preventive Health Services,” 49-76. 62 Department of Justice. National Center for Injury Prevention and Control. Violence: African-Americans October 1997. 6 3 Crenshaw, “The Marginalization of Sexual Violence Against Black Women,” 7-11. 6 4 Editors. “New York Times Health Report 1997,” New York Times special supplement October 1997. 6 5 Lisa Bennett-Haigney, Lisa. “Welfare Bill Further Endangers Domestic Violence Survivors.” National Organization for Women January 1997 I. 6 6 Richie, et al. “Battered Women of Color in Public Health Care Systems: Racism, Sexism, and Violence,” 292. 6 7 Richie, et al. “Battered Women o f Color in Public Health Care Systems: Racism, Sexism, and Violence,” 292. 197 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 0 8 United States Bureau of Census. “Data on Native-Americans in the United States,” 1991. 6 9 National Center for Injury Prevention and Control. “American Indian/Alaska Natives and Intimate Partner Violence,” Domestic Violence Fact Sheet, 1997. 7 0 Hlena Norton, and Spero M. Manson. “A Silent Minority: Battered American Indian Women,” Journal of Family Violence Vol. 10, No. #. 1995, 307-17. 7 1 See D. Chapin. “Peace on Earth Begins in the Home, The Circle 1990 14:1; Paula Gunn Allen. The Sacred Hoop: Recovering the Feminine in American Indian Traditions (Boston: Beacon Press, 1989); LM Debruyn, BJ Wilkins, and B C . Artichoker. “It’s Not Cultural: Violence Against Native-American Women,” 89th American Anthropological Association Meeting, New Orleans, 1990; and Indian Health Services, Family Violence Prevention Team. “A Model for the Prevention of Family Violence in Native-American Communities,” Albuquerque, New Mexico, 1994. 72 See DE Stannard. American Holocaust: Columbus and the Conquest of the New World (New York: Oxford University Press, 1992); R. Thornton. American Indian Holocaust and Survival: A Population History Since 1492 (Norman: University of Oklahoma Press, 1987); L.E. Wolk. Minnesota’s American Indian Battered Women: The Cycle of Oppression: A Cultural Awareness Training Manual for Non-Indian Professionals (St. Paul, St. Paul Indian Center, 1982). 7 3 LDJ Wallace, AD Calhoun, KE Powell, James O’Neil. “Homicide and Suicide Among Native-Americans, 1979-1992,” (Atlanta: Center for Disease Control and Prevention) National Center for Injury Prevention and Control, 1996. Violence Survey Summary Series, No. 2. 74 R. Bachman. Death and Violence on the Reservation: Homicide. Family Violence, and Suicide in American Indian Populations (New York: Auburn House, 1992) 50-94. 75 Robin Chester. “Grandmother Dishonored: Violence Against Women by Male Partners in American Indian Communities,” Violence and Victims 1994, 9, 249-58. 7 6 Debruyn, et al. ‘I t ’s Not Cultural: Violence Against Native-American Women”. 77 See Cindy Fleming. “Native-American Women,” Women. Alcohol and Other Drugs 1990 143-148; Mary McIntyre. “Societal Barriers Faced by American Indian Battered Women,” Women of Nations Newsletter Summer 1988; and C. Neithammer. Daughters of the Earth: The Lives and Legends of American Indian Women (New York: Macmillan, 1977). 7 8 Norton, et al. “A Silent Majority: Battered American Indian Women,” 310. 198 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 7 9 Norton, et al. “A Silent Majority: Battered American Indian Women,” 314-15. 80 Norton, et al. “A Silent Majority: Battered American Indian Women,” 317. 81 O’Toole, et al., Gender Violence: Interdisciplinary Perspectives. 243-251. 82 Metcalf “Old Woes, Old Ways, New Dawn: Native-American Women’s Health Issues,” 276-300. 8 3 Sandra Henriquez Cacavas. “Violence Against Undocumented Women,” Hastings Women’s Law Journal 1991 Vol. 3:1, 85-6. g ^ Conversations with Doctors at USC County Medical Center November, 1997. The Doctors were more than willing to speak with me but quite less willing to publicly document their claims. Q < " Cacavas, “Violence Against Undocumented Women,” 86. 86 Conversations with Social Workers at USC County Medical Center November 1997. Sara Torres. “A Comparative Analysis of Wife Abuse Among Anglo-American and Mexican-American Battered Women: Attitudes, Nature, Severity, Frequency, and Response to Abuse,” Victimology 1996 Vo. 10, No. 3, 443-94. 8 8 Sara Torres. “Hispanic-American Battered Women: Why Consider Cultural Differences?” Response 1987 Vol. 10, No. 3, 20-1. 8 9 M. A. Straus. Behind Closed Doors (New York: Anchor Books, 1990). 9 0 Office of Minority Women’s Health. c c Nursing Network on Violence Report on Responding to Violence Among Hispanic Families, 1997”. 9 1 Office of Minority Women’s Health. “Nursing Network on Violence Report on Responding to Violence Among Hispanic Families, 1997” . 9 2 Orlofif, et al. “A Look at Violence Against Women Act and Gender-Related Asylum,” 380-400. 9 3 OrlofT, et al. “A Look at Violence Against Women Act and Gender-Related Asylum,” 383. 9 4 Amendments Relating to Public Law 103-22, title VI, Subtitle E of New Immigration Law. 199 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 9 5 Amendments Relating to Public Law 103-22, title VI, Subtitle E of New Immigration Law. 9 6 Orloff, et al. “A Look at Violence Against Women Act and Gender-Related Asylum,” 399. 9 7 Scrimshaw, et al. ‘Issues in Hispanic Women’s Health: Myths and Challenges,” 329- 49. 9 8 Karen Ito, Rita Chi-Ying Chung, and Marjorie Kagawa-Singer. “Asian/Pacific Women and Cultural Diversity: Studies of the Traumas of Cancer and War,” in Ruzek et al. Women’s Health: Complexities and Differences 314. 9 9 L. Ikeda-Vogel, & Lee, J. “Domestic Violence,” Korean American Journal October 1993,9-11. 1 0 0 Kimberly Huisman. “Wife Battering in Asian-American Communities: Identifying the Service Needs of an overlooked Segment of the U.S. Population,” Violence Against Women Vol. 2, No. 3, September 1996, 262. 1 0 1 Nancy Rimonte. “Domestic Violence Among Pacific Asians,” in Asian Women United of California, eds. Making Waves (Boston: Beacon Press, 1989), 328. 1 0 2 Monica Bhaumik. “A Study of Wife Abuse in Two Cultures: The American and Asian-American,” unpublished doctoral dissertation, University of Southern California, 1988. 1 0 3 Sung Yim. “Korean Battered Wives: A Sociological and Psychological Analysis of Conjugal Violence in Korean Immigrant Families,” in H.H. Sunoo, ed. Korean Women in A Struggle for Humanization (Memphis: Association of Korean Christian Scholars in North America, 1978) 176. 1 0 4 Esther Ngan-Ling Chow. “The Feminist Movement: Where are Ail the Asian- American Women?” in Making Waves. 362-77. 1 0 5 Huisman, “Wife Battering in Asian-American Communities: Identifying the Service Needs of an Overlooked Segment of the U.S. Population,” 268. 1 0 6 P. Eng. “Woman Battering in Asian Immigrant Communities in the U.S.,” Paper presented at the Fourth International Interdisciplinary Congress on Women, New York, 1990. 1 0 7 Chen Case 200 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 1 0 8 Violent Crime Control: Law Enforcement Act of 1994, Pub. L, No. 103-22,40701, 108 Stat. 1953 (Sept. 10, 1994). 1 0 9 Huisman, “Wife Battering in Asian-American Communities: Identifying the Service Needs of an Overlooked Segment of the U.S. Population,” 269-81 . 1 1 0 Administration on Aging, U.S. Department of Health and Human Services. “Administration on Aging Fact Sheet,” 1997. 1 1 1 National Center on Elder Abuse. “Statistics — Series 1,” 1997. 1 1 2 National Center on Elder Abuse. “Statistics - Series 1,” 1997. 1 1 3 The Boston Women’s Health Book Collective. Our Body. Ourselves for the New Century 163. 1 1 4 National Center on Elder Abuse. “Statistics - Series 3,” 1997. 1 1 5 National Center on Elder Abuse. “Statistics — Series 3,” 1997. 1 1 6 Administration on Aging, U.S. Department of Health and Human Services. “Administration on Aging Fact Sheet,” 1997. 1 1 7 C. Everett Koop. “Topics for Our Times: Violence is A Major Public Health Issue,” American Journal o f Public Health. 15. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. CHAPTER V HEALTH INSURANCE AND ACCESS TO HEALTH CARE As discussed throughout this analysis, women’s personal experiences within the medical establishment reflect a system that has serious shortcomings in providing health. These experiences not only involve treatment within the system, but also general barriers to access that prevent treatment altogether. Diversity issues cannot be addressed without also addressing discrepancies in gaining access to the services themselves. This study would be incomplete if it did not examine the common links between all groups of women, insurance coverage and its relationship to access to health. Insurance coverage affects the overall quality of care received (or not received) by all groups of women. Health care policymakers must address diversity along with general access to services. Otherwise, they cannot possibly create healthy communities. A policy that only addresses access but not diversity will not work either. A radical pluralist model applied to health care can address both. The U.S. spends 50 percent more per person on medical care than any other country but fails to provide all women with medical coverage. This country now ranks in the bottom fourth of 24 industrialized countries in life expectancy, and we have the highest percentage of babies bom at dangerously low weights.1 The majority of American women, like the majority of American men, have some financial coverage for health care. Most have private insurance, and others are enrolled 201 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. in public programs like Medicare and Medicaid for the poor, elderly, and disabled. The summary statistics, however, obscure the difficulties that certain groups o f women experience in obtaining adequate health care coverage. In particular, they obscure the fact that women are more likely than men to be poor and unable to afford health care coverage (see Table 5.1).2 One third of the over 10 million women between the ages of 18 and 65 who were poor in 1990 had no health insurance of any kind during the year.3 Nearly a third of all African-American women (31 percent), 29 percent of Native-American women, 26 percent o f Hispanic women, and 10 percent of white and Asian American women are poor 4 As described throughout Chapter Three, poverty increases morbidity rates. Again, African-American women have the highest rates of morbidity across the board in every Department of Health and Human Services approved category of illness.5 This does not include death due to violence, an unapproved category, which according to the Office of Minority Health is also very high.6 Native-American women, Hispanics, and a growing percentage of Asian-American women follow closely in high rates of illness and death. A recent national study showed that people who lack health insurance use fewer medical services than the insured and are more likely to die.' Most women who lack insurance underuse preventive screening, and so thereby fail to detect disease early when they could be treated effectively (see Figure 5.1). 2 0 2 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Table 5.1. Insurance Coverage - Women and Men (ages 18 and over) Type of Insurance Coverage___________ Women_______________Men Private Insurance (Own or throuah spouse) 72% 72% Medicaid 10% 5% Medicare 20% 16% Uninsured 13% 18% N r otc: Sources do not add up to 100 percent because some people have more than one type o f insurance coverage. Source: March 1997 Current Papulation Survey Figure 5.1. Uninsured Women Less Likely to Get Preventive Care P e rc e n t 40 j E l Insured Women j i H Uninsured Women I T ype o f E x am Source: The Commonwealth Fund Women's Health Survey. Louis Hams and Associates, 1993 203 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. I [NSURANCE COVERAGE Prior to reaching age 65 and Medicare eligibility, most men obtain insurance through their jobs. In contrast, women obtain coverage in a variety of ways. Often it is tied to their family status as wives or mothers. Many rely on husbands for private insurance. Approximately equal numbers of men and women have employer-sponsored private insurance, but working women frequently obtain coverage through their husbands’ employers. Working women with employer-provided insurance are twice as likely as men to be covered as dependents,8 due in part to the fact that many women work part-time or for small businesses that do not provide insurance.9 Even women working full-time are more likely than men to obtain insurance through a family member’s employer.1 0 Their reliance on others makes many women with private insurance susceptible to disruption of coverage through events like divorce or job loss by a spouse. However, there is some protection as a result of the Health Insurance Portability and Accountability Act of 1992. Under the Act, COBRA1 1 guarantees the continuation of employee benefits for eighteen months, but the employer has no obligation to continue paying the premium. A newly divorced woman may find the full cost of insurance difficult to afford. Increasingly, women face financial difficulties getting medical care at all (see Figure 5.2). For mainstream Americans, widespread anxiety over access to medical care 204 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Figure 5.2. Costs Affect Access for All Women: Of Women who did not Get Needed Care Those Who Explained "It Costs Too Much"* 1993 65 60 -|« Percent 40 ' 57,500 and S7.501- SL5.001- less SI 5,000 525,000 550,00 over | Family Income j 1 • Base; Women who said there was a time within the past year when they did not get needed care. Source; The Commonwealth Fund Women's Health Survey, Louis Elam's and Associates. 1993 is a recent phenomenon. Both women and men worry about obtaining adequate medical benefits to pay for rising medical care costs. Between 1971 and 1991, the real cost of medical services rose rapidly. Full-time employees found themselves replaced with “part-timers” or “contract employees” who could hire without being paid costly benefits.1 2 According to a 1998 study entitled “Paying More and Losing Ground: How Employer Cost Shifting is Eroding Health Coverage of Working Families,” prepared by the AFL-CIO regarding health insurance, more and more workers are going without medical coverage (see Figure 5.3). The costs of medical care have leveled out but insurance premiums have not. It has become nearly impossible for many companies to provide coverage for employees without financial contributions from the employees themselves (see Figure 5.4).1 3 205 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Figure 5 J. Number and Percentage of Persons Who Lost Employer Coverage by Class of Enrollee 1996 9.000,000 8,000,000 - 7,000,000 - 1,572,000 6 .000,000 2,542.000 ; 5,000,000 £ 4.000,000 e ° 3.000,000 2. 000.000 1,000.000 El Workers ■ Dependent Child □ Dependent Spouse Source: The Lew in Consulting Group, Inc. estimates 1997 Figure 5.4. Reasons for Loss of Employer Health Coverage (1989-1996) Medicaid Expansions - 5% Lower Real Earnings Employment Shifts Rising Employee Premium Contributions 76% Source: The Lcwin Group, Inc. 1997 206 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Upper-, middle-, and working-class people who currently have good medical coverage increasingly fear losing medical benefits. In one study, nearly half of all respondents reported difficulty in or anxiety about being able to pay for insurance or medical services, particularly in the event of a major illness. Less than one-third were confident about being able to pay for long-term care.1 4 In another study, conducted by the National Opinion Research Center, 19 percent of all respondents reported having difficulty in paying medical bills in the past year. O f these 75 percent had health insurance.1 5 Employers offer many types of medical plans. Most require workers to pay a fixed annual deductible and to pay monthly premiums and other expenses. Employers contribute little in firms with a large proportion of part-time workers and in the service sector where women — especially women of color— are concentrated.1 6 Just because a woman is eligible for medical coverage does not mean she can afford medical care. Disparities between medical plans for executives and lower-level workers break along gender lines. For example, a former administrative assistant in one study commented: All of the partners who were male and earned over $500,000 a year had medical plans that didn’t have any co payments or deductibles and covered all prescriptions. The ‘peons’, the women administrative assistants and secretaries (who earned about $25,00 a year), got HMO coverage with large co-payments on office visits and prescriptions.1 7 Even if employees all get the same medical plan, virtually all private plans burden lower-income workers. A woman who earns $20,000 and pays a $200 deductible and $600 co-payment for hospitalization pays a far greater proportion of her earnings than 207 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. does the employee that earns $500,000.1 8 Thus, employers provide “safety nets” with the largest holes for those with the greatest needs. As a society we fail to ensure that people can get medical care for themselves and their families on modest or marginal incomes. Women who head families are particularly vulnerable. In 1993, women ages 15 to 44 had on average $2,123 in medical expenses - $1,550 paid by insurance and S573 out-of-pocket (see Figure 5.4). Over 25 percent of women who were poor paid over 10 percent o f their income for out-of-pocket medical expenses; fewer than five percent of women with high incomes spent this much.1 9 As a result, an imbalance exists among women who receive care and those that do not. For example, many middle-class and upper-class women with insurance are overscreened with little or no benefit. The American medical system fails to provide a floor of equity where by all women could be served with positive equitable results. Nevertheless, most Americans continue to have private health insurance through employment, although the proportion of American households in which neither spouse is eligible for employer-provided health benefits is increasing.2 0 Private insurance costs vary widely. Insurers set rates based on a wide array of individual and community facts. Surveys of large companies show that the average annual cost of medical insurance is $3,600 per employee.2 1 A review of HMOs by the Consumer’s Union in 1990-91 showed that the monthly cost of family premiums ranges from a low of $228 to a high of $610.2 2 Purchasing even the cheapest plan would take 16 percent of white and 18 percent of African-American full-time women’s median annual earnings.2 3 Whites are more likely than African-Americans or Hispanics to have employer-provided insurance.2 4 208 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Figure 5.5. Out-Of-Pocket Expenses, 1996: Women Pay More Than Men Ages 15 to 44 Years Old, 1996 M en 37% , Source: Lewin-VHI Analysis 1996 [ | National Medical Ejpendiliire Survev, 1996 1 ' ] Having private insurance does not guarantee women all the services they require. For instance, individuals with pre-existing conditions may be unable to obtain insurance for these conditions (even though it is against the law). Moreover, a survey of employer- sponsored health benefits found that almost half of employees in self-insured plans, 40 percent of employees in commercial plans, and 33 percent with Blue Cross/Blue Shield do not have coverage for preventive services/5 Coverage for long-term care, particularly institutional care, is rare. Only one percent of nursing home bills and seven percent of home care costs are paid through private insurance.2 6 2 AN EXAMPLE OF HEALTH ACCESS INEQUITY: HISPANIC WOMEN Medical care coverage amplifies social inequities. Whites are more likely to have private coverage than African-Americans or Hispanics; women in households with higher incomes are more likely to have private insurance than those in households with lower 209 om en 63% Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. incomes. Since 1989, a smaller proportion of men and women had private insurance whereas a growing proportion of women enrolled in public programs.2 7 This may not be a result of these women no longer needing assistance. Welfare reform by states and the federal government has pushed many women of color off Medicaid, leaving them with no medical coverage except in emergencies. There are general estimates of the numbers of women, but as o f January 1998, there has been no formal compilation o f data released by the Department of Health and Human Services. The most accurate picture of health access inequity however, comes from the Hispanic community. This particular group represents approximately 22 million people living in the United States or approximately nine percent of the total population with the majority in California (over seven million). Hispanics comprise nine percent of the total female population. They are one of the fastest-growing and most diverse groups in the country and are expected to increase to 11 percent of the population by 20I0.“8 There are more Hispanics in the labor force than any other ethnic group, yet they are over-represented in the numbers of the uninsured and the medically under-served. Nationally 32 percent of Hispanics were uninsured in 1990 compared with 13 percent for whites and 20 percent for African-Americans.2 9 Hispanic women are uninsured at particularly high rates. 22 percent of Hispanic women have no health insurance, compared with 16 percent of African-American women and 13 percent of white women.3 0 In California alone there are more than six million uninsured; over half of those are Latino. According to the National Council o f la Raza, “50 percent of all Hispanic women earned less than 510,000, an income group especially unlikely to be insured.”3 1 210 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. As a result, Hispanics are less likely to receive preventive or regular health care than are other Americans. Only two-thirds of Hispanics are likely to seek prenatal care during the first trimester while 13 percent will receive late or no care at all; this is a higher percentage than for other groups. According to the National Health Interview Survey of 1987: A larger percentage o f Hispanics than White women had never heard of or received a PAP smear, breast exam, or mammogram. Almost twice as many Hispanics as white women had never heard of breast exams and nearly three times as many had never heard of mammograms. Likewise, data show that more than seven times as many Hispanic as White women had never heard of PAP tests, and a third more Hispanic (ten percent), as White women (seven percent) had heard of but never had a PAP test in 1987.” PUBLIC PROGRAMS The U.S. boasts two major public health insurance programs: Medicare, initially for persons 65 or over, and Medicaid, the program initially designed for economically disadvantaged mothers and children. Both programs have expanded rapidly over the years. With this expansion policymakers face many more political and fiscal problems. Public insurance is a critical C i women’s issue” because women ages 18 and older are twice as likely as men to be poor (13 percent compared with eight percent) and more likely to be eligible for public insurance programs. As stated earlier in this chapter, 211 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. African-American (31 percent), Native-American (29 percent) and Latino (26 percent) women are more likely to be poor than white (10 percent) or Asian (10 percent) women.3 3 Medicaid, enacted as a welfare-type program for low-income Americans, remains largely a “woman’s program”. About three-quarters of all Medicaid beneficiaries are low-income women and their children; 13 percent of all children in the U.S. are covered by Medicaid.3 4 State Medicaid programs grew dramatically in the past decade when Congress began expanding coverage to pregnant women, infants and children, and low- income older and disabled people. Women with HIV receive Medicaid coverage, as do other disabled persons.3 5 Despite rapid increases in Medicaid spending, less than half of all persons living in poverty are actually covered by Medicaid. With the rising cost of medical coverage and limitations on benefits, a growing proportion of the population remains uninsured until serious illness reduces them to the lowest levels o f poverty. Only then do they become eligible for Medicaid. Currently, the states provide Medicaid clients with wide variations in services. Poor women are yet to experience the full effects of the Welfare Reform Package as states grapple with how to implement it. Nevertheless, Medicaid plays several important roles for low-income women. The program serves as a primary source of coverage of women receiving cash assistance through AFDC, as predominant source of pregnancy-related coverage for poor and near poor women and as a safety net for women with disabilities covered by SSL Medicaid’s coverage of women receiving AFDC has been enormously important. Today, millions of low-income women receive AFDC, and therefore are eligible for Medicaid. This coverage provides a comprehensive set of health care services. It has 212 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. been instrumental in ensuring that very poor women have access to health care services and that their health expenses do not consume income needed for basic living expenses. As stated above, the role of Medicaid in pregnancy-related care has increased substantially during the past decade as a result o f federal and state efforts to expand coverage to women whose incomes are above AFDC levels. Medicaid pays for one-third of all deliveries in this country, and eighty percent of pregnant women who are poor have Medicaid coverage.3 6 Expanded eligibility, coupled with simplified enrollment and expanded outreach efforts, has served to improve coverage and access to prenatal care for pregnant women.3 7 For low-income non-elderly women with disabilities, Medicaid is an insurer of health care, covering basic medical services and long-term care. Medicaid provides this coverage for individuals eligible for SSI benefits, and it is particularly important for low- income women with AIDS (the largest percentage being African-American), chronic mental health problems (the largest percentage being victims of violence) and other severe disabilities. These women have complex health and medical needs. Often they have fallen through the cracks in the private insurance system and have turned to Medicaid as a last resort. For Medicaid eligible women, a comprehensive set of services has been available with little or no cost sharing. Although problems persist related to provider participation in the program, Medicaid has greatly improved access over the years to health care services for low-income women. Despite Medicaid’s accomplishments, the program is not without limitations. The combination of financial and categorical eligibility restrictions that have characterized 213 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Medicaid since its inception continue to place a stranglehold on the program’s effectiveness. Despite significant federal and state expansions of eligibility for Medicaid over the past decade, eligibility policy is not always consistent with effective public health and policy objectives. The focus of Medicaid coverage — pregnant or very poor women with families receiving welfare - leaves gaps in coverage and creates barriers to coordinated and comprehensive care. Women who fall outside Medicaid’s eligibility categories or who have family incomes just above APDC levels are typically excluded from Medicaid, regardless of health needs, and are at great risk for being uninsured. For example, a woman who is not pregnant and has no children is not eligible for Medicaid assistance, unless she is disabled. This policy creates difficulties for older low- income women, who have not yet reached age 65, when they automatically become eligible for Medicare. Many of these women may be developing chronic conditions and have health care needs that could benefit from medical care but cannot afford private insurance premiums or direct payments for health care services. In addition, Medicaid’s coverage of low-income women continues to vary enormously by state and across eligibility categories. This stands in the way of simplifying eligibility and improving program participation. Moreover, these eligibility categories and income levels cause many women to move on and off Medicaid coverage over relatively short periods of time. This lack of continuous coverage creates tremendous obstacles for low-income women in obtaining comprehensive and coordinated care and for their health care providers. 214 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Loss of Medicaid coverage places women and their families at enormous financial risk for health expenses. This policy creates tremendous disincentives to poor women to increase earning levels above Medicaid eligibility thresholds and is inconsistent with efforts to reform the welfare system. An additional failure in the current system is that, among poor persons, those who are working run the greatest risk of not having insurance. Low-income women in working households are three times more likely to be uninsured than those at higher income levels.3 8 Even with public insurance coverage, women all too frequently go without needed care. Nineteen percent of women with Medicaid, ten percent of women with employer- provided insurance, and six percent of women with Medicare did not receive needed care during the past year.3 9 Women with Medicaid are also less likely to get timely prenatal care.4 0 Medicaid’s historic low rates of provider payment and low provider participation rates help explain why women with Medicaid go without care. 4 WOMEN WHO ARE UNINSURED In 1992, more than 13 million out of 97 million women 18 years or older had no insurance (see Table 5.2) 4 1 Were it not for Medicare and Medicaid, many more women would go without financial protection. More women than men rely on Medicare because women live longer and comprise a disproportionate share of the elderly population. Twenty percent of women over the age o f 18 depend on Medicare, compared with 16 percent o f adult men.4 2 Women also outnumber men as Medicaid beneficiaries 215 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Table 5.2. Percent Uninsured, 1992 Age Women____________ Men 18-24 years 24% 31% 25-44 years 14% 18% 45-64 years 11%_____________10% Source: U.S. Bureau of Census. 1992 Because (1) more women both over and under the age of 65 are poor, and (2) more women are single parents receiving welfare, which is a requirement for Medicaid eligibility.4 3 Ten percent of adult women depend on Medicaid, compared with five percent of adult men.4 4 Because of their greater dependence on Medicare and Medicaid, women have lower uninsurance rates than men do. Whereas 72 percent of both women and men have some private insurance coverage, 18 percent of men, compared with 13 percent of women, are uninsured.4 5 This pattern changes during men and women’s lifetimes. Largely because of pregnancy and childbirth, women between the ages of 18 and 45 are more likely than men to have health care coverage. 31 percent of men between 18 and 24 years of age are uninsured, compared with 24 percent of women. Eighteen percent of men ages 25 to 44 are uninsured, compared with 14 percent of women. However, between the ages of 45 and eligibility for Medicare at age 65, women are slightly more likely to be uninsured, 11 percent compared with ten percent for men.4 6 Regardless of the above, one in three low-income women are uninsured. Lack of insurance among low-income women is associated with diminished access to health care across a broad range of indicators, including having a regular source of care, and use of 216 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. preventive care. These findings corroborate those of other studies, which found lower levels o f use among the low-income population and that insurance plays a critical role in improving access to care, particularly for low-income populations.4 7 Certain groups of women are more likely to be found among the uninsured or under insured. Almost a quarter of young women, 18 to 24, has no coverage despite their need for reproductive and preventive care.4 8 Poor women are particularly at risk despite the availability o f Medicaid because many poor women do not meet Medicaid’s eligibility criteria, which mainly cover single mothers receiving welfare support. Many women work in jobs that do not provide health insurance. They either earn too little to buy insurance for themselves or do not meet the eligibility criteria for Medicaid because they are not receiving welfare support. It is an irony o f our current employment-based insurance arrangements that working poor women are more likely to be uninsured than are low-income women who do not work.4 9 Working women are only one-third as likely to receive insurance from an employer as the non-poor, and they are over five times as likely to be without insurance from any source.5 0 Being employed actually restricts access to medical care for women who are poor because earning make them ineligible for public health insurance programs.5 1 These working women who are near or only slightly above the poverty level have over the past decade joined the ranks o f uninsured. Their modest to marginal earnings make paying premiums for inadequate medical coverage neither rational nor practical. Herein lies what may be the most overlooked impediment of implementing Clinton’s Welfare Reform package: moving women off welfare and into jobs. 217 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Health insurance coverage is important because it reduces financial barriers to health care. Low-income women are likely to have fewer discretionary dollars to spend after providing basic necessities for themselves or their families. Thus, the cost of health care services is much more likely to affect women at lower income levels and can create serious access problems. The Commonwealth Fund Survey discussed throughout this analysis found that financial factors are the foremost reason cited by low-income women for not getting needed care. While other factors, such as those discussed in Chapter Three, may also influence access; health insurance is absolutely essential because low-income women do not have the financial means to pay for care directly. Women without health insurance more often than not go without care. Two recent national surveys found that women are more likely than men to go without needed care. The problem is especially serious for uninsured women. The Commonwealth Fund Survey on Women’s Health found that 13 percent of all women, compared with nine percent of all men, did not received needed care within the past year. A third of uninsured women (36 percent) did not received care, compared with 23 percent of uninsured men.5 2 The Kaiser/Commonwealth Fund Survey of Health Insurance confirming these findings found that 35 percent of uninsured women, compared with 24 percent of uninsured men, postponed needed care during the year.5 3 Going without health coverage is not a matter of choice for most of the uninsured. About half (51 percent) of all uninsured adults report that they do not have insurance because they cannot afford it. Another quarter (25 percent) say they do not have health 218 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. insurance because they lost their job or their employer does not offer benefits. Only four percent are uninsured because they have poor health or were denied health benefits.5 4 Families with incomes below the median U.S. family income of $35,000 are most affected by lack of insurance. Three in five (59 percent) adults in families who earned less than $20,000 annually were uninsured or had a recent gap (sometime in the past two years) in health coverage. One-third (31 percent) who earned between $20,000 and $35,000 annually also was currently or recently uninsured. “This survey shows us that people are not uninsured because of preexisting conditions or because they opted out of coverage. Many working families simply cannot afford the high cost of health insurance premiums.5 5 Lack of health insurance leads directly to barriers to health care and problems paying medical bills. Nearly half of the working uninsured (48 percent) reported difficulties with access or costs, while only 15 percent of people who had continuous coverage report these problems. The survey also finds that nearly one-quarter (24 percent) of uninsured adults say they had not filled a prescription they needed in the past year. One in six (17 percent) report that they had to change their families’ way of life significantly to pay medical bills. “Many uninsured working families incur unmanageable financial burdens due to medical emergencies or serious illness, or even worse, go without health care at all.”5 6 Uninsured women are more likely to go without mammograms, and other critical preventive services. 62 percent of uninsured women over the age of 50 had not had a mammogram in a year; 50 percent of uninsured women had not had a Pap smear.5 7 In addition, many uninsured women do not receive timely prenatal care.5 8 219 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. The consequences of uninsurance and under-insurance can be deadly for women. Rates of survival for breast cancer for local disease are lower for uninsured patients and for patients with Medicaid than for privately insured patients.5 9 A longitudinal study of more than 4,500 people found that over a 26-year period-uninsured people were twice as likely to die (18 percent) as insured people (10 percent) 6 0 Other important factors such as gender, and race were not examined in this study. As the private sector withdraws benefits, the public sector expands to “take up the slack.” The growth of public sector spending erodes public confidence in government, especially among people who have too much income to qualify for assistance but too little to be able to provide for themselves. This impoverishment of middle- to low- income workers fuels social divisions and political dilemmas. Health care workers are a prime example of the above. These individuals, who are predominately female, provide a case study of how sex, race, and class stratification in the labor force affect insurance status. Nearly one million health care workers, who constitute nearly nine percent of the civilian health care labor force, do not have health insurance. In nursing homes, one-fifth of employees are uninsured. The largely female food services staffs and aides, who are also most likely to be members of racial/ethnic minority groups, are least likely to be covered. In doctors’ offices, over half of all employees pay for their entire policies, whereas six percent have no coverage at all.6 1 On the open market outside of employer-based group plans, many women cannot get insurance. Histories of a growing array of “health risks”, such as cancer, turn women into “uninsurables”. In addition, the growing use of technology like genetic testing or 220 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. screening for HIV and other diseases help insurers and employers keep risky individuals out of their employment pools. Women and their families who have disabilities or even genetic markers for diseases that they may or may not actually develop get “risked out.” Many employers “let workers go” when they develop costly illness, fearing large claims will raise their rates. Or they cap the amount of coverage (e.g., at $100,000) and allow employees with chronic or terminal conditions to face financial disaster. Thus those who need insurance have the most difficulty getting it. Other life decisions get pulled into the medical care mess. Some mothers stay on welfare to keep Medicaid benefits. In the gap between divorce and eligibility for Medicare at age sixty-five, women struggle to pay medical bills.6 2 Many elements of President Clinton’s proposal, which floundered in late 1994, represented positive and important advances for women. These included the promise of universal coverage; an expanded standard benefits package, which included the promise of universal coverage; an expanded standard benefits package, which included free prenatal care and regularly scheduled preventive and early detection services for women; and broader mental health and substance abuse benefits. However, Clinton’s plan was inadequate in several key respects. For example, its reliance upon a premium-based payment system was inherently regressive. A woman with children earning $20,000 a year as a secretary would have paid the same 20 percent share of the family premium as her $55,000 a year boss. It is critical that any national health program includes a percent of income cap on premiums and all out of pocket expenses.6 3 Also, several million undocumented women and their families would have 221 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. lost coverage and had no access to anything other than emergency care. The lack of a sliding scale in subsidies was Mother deficiency in o f the plan. In summary, the difficulties women encounter in obtaining health care coverage differ from those encountered by men. Women are less likely than men to be able to pay for private coverage because they are poorer. They are more dependent on public programs. They are more likely than men to go without needed care, particularly if they are uninsured, poor, or Latino. When they do have insurance, it may not pay for preventive services of proven benefit to women. Working poor women are particularly vulnerable to a lack of coverage. This population of uninsured is such a serious problem that Kaiser Family Foundation in February of 1998 formed a Commission that not only addresses Medicaid but the uninsured as well. The new Commission will extend the work of the Kaiser Commission on the Future of Medicaid to more directly address health care coverage for all low-income Americans. This bi-partisan commission will serve as a focal point for information and analysis for policymakers on health coverage, access, and financing issue for the low-income population, with this special emphasis. “It’s the Commission’s job to shine a spotlight on health care for the poor and vulnerable and with analysis and facts help to find ways to address their health needs.” A l S part of this Commission’s effort it will assess the implementation of new State Insurance Programs as they begin replacing old welfare health packages. The Commission hopes to identify new strategies for covering low-income uninsured people and reaching those who are eligible for, but not participating in, Medicaid. The Kaiser Family Foundation plans to commit approximately $35 million over the next five years to 222 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. support research and education programs for policymakers addressing health coverage of the low-income populations.6 4 5 IMMIGRANT WOMEN: LOST IN REFORM As stated throughout this chapter, very few citizens can afford to pay for health care without health insurance. Therefore, those without health insurance, or whose coverage maximums have been reached, are frequently dependent on some form of publicly sponsored health care. There are a variety of limitations on immigrant women’s access to health care provided by public programs. These limitations vary from program to program, without any real public health rationale. Medicaid eligibility is restricted based in one’s status in this country. The federal government’s attitude toward Medicaid coverage for legal or non-Iegal immigrants is particularly problematic for women. For example, we can examine prenatal care. As stated earlier, in recent years Congress has expanded Medicaid coverage of pregnancy- related health care, recognizing the severe health dangers for infants and the high cost for subsequent health care if prenatal care is not provided. Further, Congress has found prenatal care to be cost-effective. The Department of Health and Human Services, however, has interpreted the law to allow Medicaid to provide prenatal care only to pregnant immigrants who are permanent residents or “permanently residing in the United States under color of law.” 223 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. This has subjected children who are born to transient immigrants to the serious threats of low birth-weight and lifelong disabilities. It has also increased health care costs. Legal permanent residents (with some limited exceptions)6 5 who are “permanently residing in the United States under color of law” are eligible for full Medicaid coverage.6 6 The proper interpretation of “permanently residing in the U.S. under the color of law” has been the subject of many disputes.67 The general definition is that of an individual living in the country with the knowledge and permission of INS “whose departure the INS does not contemplate enforcing.” HHS has listed specific status categories that meet the definition of permanently residing in the U.S. under color of law6 8 , but courts have included additional specific situations that also qualify.6 9 The concept of “permanently residing under color law” reflects the reality of immigration law. It recognizes that many individuals have a legal basis for staying in the country, and therefore should have access health care through Medicaid for their sake and the public health. Citizenship or status is not a criterion for eligibility for emergency services under Medicaid./ G However, the application of some state residency rules has led to the denial of emergency-care coverage to women who have a temporary immigration status.7 1 Medicare is tied to eligibility for Social Security benefits. Women who do not qualify for Medicare through Social Security cannot choose to pay to participate, unless they have been permanent residents for five years.7 2 This limitation particularly affects women who have worked in jobs with no Social Security coverage, such as domestic work. There have been several recent federal legislative proposals to further limit the eligibility of immigrants for federally funded health care programs, including Medicaid. 224 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Examples from 1995 include “The Personal Responsibility and Work Opportunity Reconciliation Act”. Some legislators seek to limit the definition of “Permanently residing in the U.S. under the color o f the law” to a few categories of aliens. This approach ignores the complexity and realities of immigration law, which result in the long-term residence in the United States. Under the Personal Responsibility and Work Opportunity Reconciliation Act, states decide implementation. In California, Governor Pete Wilson seeks to eliminate the prenatal care program funded exclusively by the state for undocumented immigrants. In New York, the federal government has filed a motion to vacate the ruling in Lewis v. Grinker. that all women are eligible for prenatal care under Medicaid whether their immigration status is documented or not. The motion maintains that the new act provides evidence, previously missing, that Congress intended to deny Medicaid coverage for non-emergency prenatal care to undocumented immigrants. Texas is considering permanently banning benefits for new, legal immigrants. Pending the outcome of such executive, judicial, and legislative decisions, state and local policies are in flux. Thus, the direct and indirect consequences of welfare reform for prenatal care are likely to be substantial.7 3 Regardless of the above-proposed reductions, fbreign-bom women have not participated in public programs at high rates. A recent report on access to health services in Los Angeles found that a substantial proportion (39 percent) had episodic health coverage or none.'4 This study further indicated that policymakers must pay attention to quality and costs in order to increase access for this particular group of women. 225 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 6 QUALITY AND COST The quality of care and its measurement are essential considerations in health care reform. All women, as major users of health care for both themselves and their families, have a major stake in seeing that cost savings are not achieved by compromising access or quality. Although the concepts and technology to measure quality are under intensive development, the capacity to measure quality lags behind the capacity to measure costs. Until a system to assess quality can be put in place, information will be the primary tool and resource by which individuals can judge the performance of different health plans and providers. Health care reform should require that plans and providers maintain and make public information on costs, and outcome performance. Many o f the proposed health reform plans would set up arrangements under which plans and providers would compete for the enrollment o f individuals on the basis of price and quality. These arrangements would allow many more individuals to choose from among health care plans and providers as large employers do now. Information is essential to protect quality in this type of system. Whereas under a predominantly fee- for-service system there are incentives for providers to use more services than necessary, the opposite may hold true in a predominantly managed care system. Special attention will need to be paid to the quality and performance of plans that serve vulnerable populations of women such as Medicaid beneficiaries. Because very few of these populations have participated to date in other than fee-for-service 226 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. arrangements, there is relatively little experience to indicate how these plans will address their needs and remain competitive. Medicaid is still the primary vehicle used to expand coverage for low-income women. The program continues to be an essential source of financing particularly for pregnant women and mothers. Budgetary pressures facing the program may, however, jeopardize the program’s coverage of low-income women. tn addition, many women remain outside the reach of Medicaid or private insurance. Private insurance is unaffordable to low-income women because of high premiums and the typical benefit package often does not meet the complex health needs of low-income women. The greater incidence and prevalence of a wide range of health problems among low-income women highlight the importance of covering a broad range of health care services. Policymakers have increasingly recognized the value of covering preventive services and over the past decade there has been an increase in the coverage and use of services, such as Pap smears and mammograms. However, many low-income women still do not receive these services at recommended rates. For example, an important finding of The Commonwealth Fund Survey is the higher incidence of mental health problems among low-income women. Lack of economic resources places low-income women at risk. Access to mental health services is, therefore, an important component of comprehensive coverage for poor and near-poor women. Also less readily appreciated are the needs of poor women with disabilities. For these women, health needs extend far beyond mammographies and Pap smears. 227 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Increased financial support is critical to improve the quality of life for these low-income women. In addition, policymakers must ensure that cost-sharing levels are not excessive. Even nominal cost-sharing levels can create barriers to care or strain the ability of low- income women to meet other essential living expenses for themselves and their families. Given the greater health care needs and lack of income among poor and near-poor women, how health care is structured and delivered is of critical importance to low- income women. In the absence of reform at the federal level, states are aggressively seeking major restructuring of health care services for their low-income populations. '5 Typically, these programs offer simplified and broadened eligibility to expand coverage for the uninsured population previously excluded from Medicaid. These expansions are financed in part through projected cost savings obtained by the increased use of managed care and payments by near-poor beneficiaries. Depending on how these programs are structured and financed, the potential exists to improve longstanding gaps in insurance coverage and access to care. However, careful attention to how these changes affect low-income women previously eligible for Medicaid and newly eligible for coverage is needed. Careful evaluation of these demonstrations will be needed to assess whether coverage and access to care for low- income women is improved or diminished. Facing enormous pressure to control spending, many state Medicaid programs are turning to managed care to expand access and control spending. The number of Medicaid beneficiaries enrolled in managed care doubled from 1993-1994, reaching 228 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. nearly eight million.7 6 Because most of these enrollees are women and their children, these organizational changes in the delivery system have important implications for low- income women. The increasing use of managed care for the Medicaid population has potential benefits as well as drawbacks. The concept of managed care holds the promise of improving access to care. By ensuring that beneficiaries have a primary care provider responsible for coordinating care, we could improve access and quality. O f particular importance to low-income women is how special services are handled by managed care plans. Important questions include assessing whether providers are adequately trained in determining when these services are appropriate and whether low-income women who need these services are able to access them. In sum, insurance coverage issues are vitally important to the health and economic well being o f low-income women and their families. Addressing the gaps in health coverage among low-income women should be a policy priority. 7 INSURANCE REFORM Health care reform that enables all Americans to obtain affordable coverage, private or public, regardless of income, would correct many of the problems that currently prevent many women, particularly low-income women, from getting the care they need for themselves and their families. 229 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Policymakers need to have a vision of what it means to have healthy communities. When policymakers can think of diversity as key to creating health insurance then they can discuss equitable distribution of resources. If the discussion is opened up. it is possible to find new ways to balance private wants with public needs. If as is likely, reform is built on the current employer-based system of providing health insurance, special consideration should be given to providing adequate insurance for those who are often left out of such a system. Thus, extension of coverage to more people, or ideally, universal coverage is an important goal for health care reform. Extending insurance coverage to more individuals, however, is not sufficient to ensure access. Insurance plans that do not cover certain services, such as preventive services, or that require high out-of-pocket costs for some services, may impede access to those services, particularly for those with low incomes. It is important, therefore, not only that insurance reform extend coverage but also that women have access to a benefit package that includes the basic set of services that women need and that any out-of- pocket costs associated with these basic services be affordable even to low-income women. 8 CHAPTER SUMMARY AND CONCLUSIONS This chapter examined how women currently obtain health insurance, how their coverage affects their access to health care services, the extent to which women are covered for services important to their health, and what they currently spend from their personal resources for health care. Clearly, low-income women are the most seriously 230 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. disadvantaged under the current arrangements. This chapter does not speak exclusively to women’s concerns but includes men as well. To the extent that health care reform enables all Americans to obtain appropriate, affordable health care, it will help women get the care they need for themselves and their families. The data presented in this Chapter support the hypothesis: if policymakers expand access to primary care for ail women, general health will improve. Data also indicate that the type of access affects health. If a woman is poor, she tends to have greater incidences of ill-health. True “health care reform,” however, requires more than health financing. Even when whether a person has insurance is taken into account, other factors affect access to care. This suggests the complexity of differential access. While having insurance increases access to care, it does not entirely eliminate barriers to care. Policies to eliminate nonfinancial barriers to care need to be tailored to the problems of different communities, and research on best practices in health care delivery in those communities will help focus resources. Existing resources that serve diverse communities need to be restructured to provide the kinds o f services a given community needs. A radical plural feminist model of care addresses the many issues affecting women’s health that cannot be addressed solely through financing proposals. This model extends beyond the actual framework of the health care system by examining the other critical problems that adversely affect the health and mental health of women. These include violence against women as discussed in Chapter Four, unemployment and poverty as discussed throughout this analysis, and finally specifically addresses the diversity o f health concerns among various communities of women. Let us return to these communities and examine their proposals. 231 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. CHAPTER ENDNOTES 1 Morbidity and mortality are affected by far more than health care, but lack of medical care is widely associated with poor health status and excess risk of death. See George Schieber, Jean-Pierre Poullier, and Leslie Greenwald. “Health System performance in OECD Countries, 1980-1992.” Health Affairs 108. 2 K.S. Collins, D. Rowland, A. Salganicoff. and E. Chait. Assessing and Improving Women’s Health (Washington, D.C.: Women’s Research and Education Institute, 1994) 34. 3 K.S. Collins et al., Assessing and Improving Women’s Health. 34. 4 K.S. Collins et al.. Assessing and Improving Women’s Health. 34. 5 See Department of Health and Human Services (DHS) “Healthy People 2000 Review 1994,” DHHS Publication No. (PHS) 95-1256-1. 6 Office of Minority Health. “Violence is an Illness,” Publication No. 3 1995. ' This effect remains even after controlling for sociodemographic differences in insured and uninsured groups. See Peter Franks, Carolyn M. Clancy and Martha R. Gold. “Health Insurance and Mortality: Evidence from a National Cohort.” Journal of the American Medical Association 1993 270:737-41. 8 K.S. Collins et al.. Assessing and Improving Women’s Health. 37. 9 One half of working women is employed part-time. Bureau of Labor Statistics, Handbook of Labor Statistics. Bulletin 2340 (Washington. D.C.: Department of Labor, August 1989). 1 0 ECS. Collins et al., Assessing and Improving Women’s Health. 37. 1 1 Employers who have twenty employees or more on at least fifty percent of its working days during the year must meet the requirements of IRC Sec. 4980B, also known as “COBRA.” Under COBRA, an employer must give covered employees (including spouses and dependent children who are covered) the opportunity to elect continuation coverage under an employer maintained group health plan (including plans to which the employer does not contribute financially) after any o f the following events: death of covered employee; divorce of covered employee; termination of the employee’s employment; covered employee becomes entitled to Medicare, etc. The Jacobs Company “COBRA” Coverage. 12 U.S. Bureau of Census. “Money Income of Households, Families and Persons in the United States: 1991,” Washington: Government Printing Office, 1992). 232 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 1 3 AFL-CIO. “Paying More and Losing Ground: How Employer Cost-Shifting fs Eroding Health Coverage of Working Families,” (Washington, D.C.: The Lewin Health Consulting Group, 1998). 1 4 L.R. Jacobs and R. Y. Shapiro. “"Public Opinions Tilt Against Private Enterprise,” Health Affairs 1994 13(I):285-98. 1 5 Robert Blendon , K. Donelan, and C. A. Hill et al. “Paying Medical Bills in the United States,” Journal of the American Medical Association 1994 271:949-51. 1 6 AFL-CIO. “Paying More and Losing Ground: How Employer Cost-Shifting Is Eroding Health Coverage of Working Families,” (Washington, D.C.: The Lewin Health Consulting Group, 1998). 1 ' Sheryl Burt Ruzek. “Access, Cost, and Quality of Medical Care: Where Are We Heading?” Health Affairs 13ffl:274-84. 1 8 Charlotte Muller. Health Care and Gender. (New York: Russell Sage Foundation, 1990). 1 9 The Women’s Research and Education Institute in 1994 defined women who had incomes at or below the federal poverty level as poor and those with incomes at 400 percent or more of the federal poverty level as high income. 2 0 Claudia L. and Amy Taylor. “Choice of Health Insurance and the Two-w'orker Household,” Health Affairs 1991 10(1): 155-63. 2 1 * Data on insurance are summarized in National Center for health Statistics (1995:35). 2 2 Editors for Consumers Reports. 1992:94-99. 23 U.S. Bureau of Census. Income Report 1992. 2 * 4 Karen Seccombe, Leslie Clarke, and Raymond Coward. “Discrepancies in Employer- sponsored Health Insurance Coverage Among Hispanics, Blacks and Whites: The Effects of Sociodemographic and Employment Factors,” 1994 Inquiry 31:221-29. 25 Health Insurance Association of America. Employer-Sponsored Insurance. 1987 (Washington, D.C., 1988) 11. 2 6 K. Levit, H. Lazenby, C. Cowan, and S. Letsch. “National Health Expenditures, 1990,” Health Care Financing Review 14 (Summer 199I):29-54. 233 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2‘ Jacqueline Horton. Women’s Health Data Book: A Profile of Women’s Health in the United States. 2d edition (Washington: Jacobs Institute of Health, 1995). 2 8 National Hispanic Health Organization. “Essential Principles for Responsible Health Reform.” 2 9 National Hispanic Health Organization. ‘Essential Principles for Responsible Health Reform.” 3 0 The Commonwealth Fund, The Health of American Women (New York: Louis and Harris and Associates, 1993). 3 1 National Hispanic Health Organization. “Essential Principles for Responsible Health Reform.” 3 2 National Hispanic Health Organization. “Essential Principles for Responsible Health Reform.” 3 3 Estimates of poverty status of men and women are based on the 1991 Bureau of Census Population Survey. 3 4 Challenges in Health Care: A Chartbook Perspective (Princeton: Robert Wood Johnson Foundation, 1991). 3 5 Kaiser Commission on the Future of Medicaid. ‘The Medicaid Explosion: Causes and Consequences,” (Baltimore: Kaiser Commission on the Future of Medicaid, 1993). 3 6 J. Holahan, C. Winterbottom, and S. Rajan. “The Changing Composition of Health Insurance Coverage in the United States,” Background report prepared for the Kaiser Commission on the Future of Medicaid, Washington, D.C. 1995. 3 7 J. Piper, E. Mitchell and W. Ray. ‘Presumptive Eligibility for Pregnant Medicaid Enrollees: Its Effects on Prenatal Care and Perinatal Outcome,” American Journal of Public Health 1994 84:1626-30. 3 8 Barbara Lyons, M.H.S., Alina Salganicoff, Ph.D. and Diane Rowland, Sc.D. ‘Poverty, Access to health Care, and Medicaid’s Critical Role for Women,” A Report to the Commonwealth Fund, 1996. 3 9 The Commonwealth Fund, The Health of American Women. 4 0 K.S. Collins et al., Assessing and Improving Women’s Health. 38. 4 1 C J.S. Bureau of the Census, Poverty in the United States. 1992 (Washington, D.C., 1993) 148. 234 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 4 2 U.S. Bureau of the Census, Poverty in the United States. 1992. 148. 4 3 K.S. Collins et al., Assessing and Improving Women’s Health. 38. 4 4 U.S. Bureau of the Census, Poverty in the United States. 1992, 148. 4 5 U.S. Bureau of the Census, Poverty in the United States. 1992, 148. 4 6 U.S. Bureau of the Census, Poverty in the United States. 1992, 148. 4/ Institute of Medicine. “Access to Health Care in America,” (National Academy Press, 1993). 4 8 U.S. Bureau of the Census, Poverty in the United States. 1992, 148. 4 9 K.S. Collins et al., Assessing and Improving Women’s Health. 40. 5 0 Karen Seccombe, and Cheryl Amey. “Playing by the Rules and Losing: Health Insurance and the Working Poor,” Journal of Health and Social Behavior 1995 36:168- 81. 5 1 Karen Seccombe, and Cheryl Amey. “Playing by the Rules and Losing: Health Insurance and the Working Poor,” 168. 5 2 The Commonwealth Fund, The Health of American Women. 5 3 The Henry J. Kaiser Family Foundation and the Commonwealth Fund. Survey of Americans and Their Health Insurance (New York: Louis Harris and Associates, 1993). 5 4 The Kaiser Family Foundation. “Many Working Families Struggle to Get Needed Care and Pay Medical Bills,” Document 1347, December 8, 1997. 5 5 Karen Davis, President of the Commonwealth Fund. 5 6 Karen Davis, President of the Commonwealth Fund. 5/ The Commonwealth Fund, The Health of American Women. ' P. Braveman et al. “Access to Prenatal Care Following Major Medicaid Eligibility Expansions,” Journal of the American Medical Association 269 (March 10, 1993). 5 9 J.Z. Ayanian, B.A. Kohler, and A.T. Epstein. “The Relation Between Health Insurance Coverage and Clinical Outcomes Among Women with Breast Cancer,” New England Journal of Medicine 329 (1993):326-3l. 235 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 6 0 P. Franks, C.M. Clancy, and M. Gold. ‘"Health Insurance and Mortality: Evidence from a National Cohort,” Journal o f the American Medical Association 270 ( 1993):737- 41. 6 1 David Himmelstein, and Steffie Woolhandler. “Who Cares for the Caregivers? Lack of Health Insurance Among Health and Insurance Personnel,” Journal of the American Medical Association 1991 266:399-401. 6 2 Charlotte Muller. “Women in Allied Health Professions,” in Emily Friedman, ed. An Unfinished Revolution: Women and Health Care in America (New York: United Hospital Fund of New York, 1994) pp. 177-203. 6 3 Judy Norsigian. ‘The Women’s Health Movement in the United States,” in Kary U . Moss, ed. Man-Made Medicine: Women’s Health. Public Policy and Reform (Durham: Duke University Press, 1996). 6 4 Chris Ferris. “Kaiser Family Foundation Announces New Kaiser Commission on Medicaid and the Uninsured,” Press Release from Kaiser Family Foundation, February 10, 1998. 6 5 Permanent residents who previously were temporary residents of Special Agricultural Workers (SAWs), and thereby eligible for AFDC, are folly Medicaid eligible only if five years have passed since they were granted temporary resident SAW status; they are under 18; they are 65 or older; they are disabled; or they were Cuban/Haitian entrants before becoming temporary residents or SAWs. 8 U.S.C. 1253(h). 6 6 42 U.S.C. I396b(v)(l). 6/ For a discussion of cases of permanent residence in the United States under the color of the law, see Robert Rubin, “Walking a Gray Line: The ‘Color of Law’ Test Governing Noncitizen Eligibility for Public Benefits,” San Diego Law Review 24 (March-April 1987): 411-447; Janet Calvo, “Alien Status Restrictions on Eligibility for Federally Funded Assistance Programs,” New York University Review of Law and Social Change 16 (1987-1988):395,411 . 6 8 Those with status recognized by HHS as “permanently residing in the United States under color of law” includes parolees, aliens with an indefinite stay of deportation, aliens with indefinite voluntary departure, aliens on whose behalf an immediate-relative petition has been approved and their families covered by the petition, aliens who have filed applications for adjustment of status, aliens granted stays of deportation whose departure INS does not contemplate enforcing, aliens granted deferred action status, aliens under orders of supervision, aliens who have entered and continuously resided in the U.S. since before January I, 1972, aliens granted suspension of deportation, conditional entrants, and Cuban/Haitian entrants. 42 C.F.R. 435.408 Department of Health and Human Services. 236 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 6 9 See, e.g. St. Francis Hospital v. D;Elia. 71 AJD.2d 110,422 N.Y.S.2d 104 (1981). 7 0 42 U.S.C. 1396b(v). 7 1 See Salem Hospital v. Commissioner of Public Welfare. 574 N.E.2d 385 (Mass. 1991). 7 2 42 U.S.C. I395i-2(a). 7 3 Sounding Board. “Welfare Reform and the Obstetrical Care of Immigrants and Their Newborns,” The New England Journal of Medicine September 4, 1997, Vol. 337, No. 10 1-5. ,A Sounding Board. “Welfare Reform and the Obstetrical Care of Immigrants and Their Newborns,” 5. 7 5 S. Rosenbaum, and J. Darnell. “Medicaid Section 1115 Demonstration Waivers: Approved and Proposed Activities as of July 1995,” Report prepared for the Kaiser Commission on the Future of Medicaid, Washington, D.C. 7 6 D. Rowland, S. Rosenbaum, L. Simon, and E. Chait. “Medicaid and Managed Care: Lessons from Literature,” A report of the Kaiser Foundation on the Future of Medicaid, Washington, D.C. 1991. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 237 CHAPTER VI CONCLUSION: WOMEN’S HEALTH CARE POLICY FOR THE NEXT CENTURY This analysis has revealed troubling conflicts and contradictions in the American health care system concerning women’s treatment and access. As stated in the last chapter, spending is crucial but it alone does not ensure that women will get careful diagnosis, caring and concern from medical care providers. Physician Carolyn DeMarco writes: Over the last sixteen years o f medical practice, 1 have seen many women suffer needlessly because their doctors did not really listen to them, told them that physically based complaints were all in their heads, and treated normal events in a woman’s life as if they were diseases. Time and time again I have seen women paying a heavy price for the careless prescription of antibiotics, birth control pills, hormones and tranquilizers.... Women are not getting healthier. In fact, we see the opposite trend in our practice.1 Three decades of women’s health activism underscore the above comment. Women have identified the issues and as this study indicates actively pursued change in health care policy. Policy makers need to address the follow problems and more: We are the only industrialized country except for South Africa that does not have a national health program We may not admit it, but we do ration medical and health care already - and on a most inequitable basis. And those who are uninsured appear to receive inferior care, even when they do receive medical care. To be able to obtain coverage as stated in the last chapter, women have to be employed at certain kinds of jobs and be 238 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. financially well-to-do or poor enough to qualify for Medicaid or other entitlement programs that frequently offer a substandard form of care. Medicare covers on average only forty percent of medical expenses. There is now no basic legal right to health care recognized by our federal government Again, as stated in the last chapter, women are at significant risk for over treatment when they have insurance (for example, unnecessary cesarean sections and unnecessary hysterectomies) and are under greater risk of under treatment when they have no form of medical coverage. Access to appropriate care remains an unattained goal for many women regardless of their insurance status. As stated in chapter three, women of color in general have poorer health status than white women. As stated, poverty has a major impact on health and women of color are disproportionately poorer than white women are. But reduced access to needed medical care, and especially primary care, contributes substantially to this poorer health status. 1 FIGHTING FOR THEIR HEALTH: AFRICAN AMERICAN WOMEN We have become cognizant of the urgency of contextualizing Black women’s health in relation to the prevailing political conditions. While our health is undeniably assaulted by natural forces frequently beyond our control, all too often the enemies of our physical and emotional well-being are social and political.2 As this analysis indicates, African American women face a myriad of health problems that are unique to them because of their position in American society. These problems, and a lack of adequate resources to cope with them, all contribute to a higher incidence of many physical, mental, and social ills. If health policymakers are serious about improving the health status of African American women in this country, they must take a holistic view of African American women and the wide range of social factors and stressors that affect their lives, their 239 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. health, and the health of their families. Policymakers cannot address inaccessibility to quality health care and other issues without also examining the many chronic life stressors like violence that affect African American women daily. African American women’s health care status will not improve if policymakers do not address underlying issues of classism, racism, and sexism in health care institutions. As the information provided early on indicates, health care institutions have provided inferior services to African American women, especially to those that are poor, and these institutions have placed little value on their lives. These factors contribute to the significant disparities between white and African American mortality and morbidity. Even by acknowledging the above, a major problem faced by policymakers is how to improve the health o f African American women and provide health education and quality health care services at a time when cost containment and budget cutbacks are the order of the day. The current trend is to cut back on the poor’s utilization of health services. There also seems to be little concern by politicians for marginally poor who are ineligible for Medicaid yet cannot afford even inferior health services. This must change. Policymakers must not only become more sensitive to diversity within African American communities but they must work with these communities to effect change and empower residents to improve their health status. Change begins with a concern for those who suffer the most and attempting to do something about it. African American women are at the bottom of the economic ladder (see chapter three). Until opportunities for these women increase, many health problems will not change. Organizations like the National Black Women’s Health Project (NBWHP) must 240 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. define their own health concerns and priorities as they come from the community. Effective health policy will fail if communities are forced to rely solely on those outside the community. Organizations have put pressure on government agencies to address what are narrowly viewed by some as strictly “black health problems.” Policymakers cannot lose sight of the many health problems that disproportionately affect African American communities. Resources for research, early diagnosis and treatment programs, more trained African American women health professionals, and viable programs that are culturally sensitive and holistic in nature need to be increased. Obviously, many of the gaps that exist between health status of African American women and white women can only be closed with more financial resources along with more involvement from African American women themselves. All too often, those most affected by policy decisions are not included in the decision making process. African American women must expect and demand more from the health care system. One of the most difficult challenges for health care policymakers is finding ways to persuade African American women to utilize available health care services, even though these services are provided by a system that historically has mistreated and at times abused them. “Poor black women who are subscribers to health plans have been denied treatment because hospital officials have presumptuously argued that they were lying about their insurance coverage."3 Because African American women represent one of the largest ethnic groups in the United States, the health status of these women must be improved if we are to 241 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. improve the health status of the nation. A radical plural feminist model seriously addresses those issues that affect the well-being of African American women. The model purports that policymakers must work toward educating the community and improving the quality of care and make significant changes in the racist and sexist attitudes and practices of the larger society. In the final analysis, these are the issues that affect the quality of not only African American women’s lives but also the lives of all women. Healthy People 2010 hopefully will begin to adequately address these disparities faced by African American women. 2 FIGHTING FOR THEIR HEALTH: NATIVE AMERICAN WOMEN This analysis has illustrated the enormous inequities Native American women experience in trying to better their health. Socio-economic status along with their gender has virtually made these women invisible at the health care policy table. One of the major obstacles to visibility is not only the inadequate attention paid to this population but the funding that is critical to healthy communities. The unfortunate aspect of Indian health care policy, in general, is that pressures from twenty years ago still exist today. Many of the goals for women’s health remain unchanged: increasing the number of beneficiaries for health services; costs; and general access issues. These pressures have been intensified by an environment of budget reductions, the transfer o f many federal programs to states and overall erosion of resources. These are forces that challenge the Native American women’s ability to 242 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. access quality care. Many Native American women’s organizations are facing these challenges.4 These challenges are heightened by the federal government’s reduction and sometimes elimination of public, social, and welfare programs that are essential for many native women, in essence, there is a basic erosion of resources and beneficial services. One cannot deny that Native women’s health is greatly affected when the budgets of other agencies and Indian programs are reduced. Activists feel that “anti-government sentiment must not be allowed to be the reason the federal government ignores is responsibilities and treaty obligations to American Indian people.”5 A critical issue to address is when power does shift to the states. Often states do not consider tribes or the Indian population when developing their programs, though states still count Indians as part of their population base and use that data for revenue. States make the assumption that Indian people have a relationship only with the federal government and their health and welfare is only a federal responsibility. This common misperception is one of the reason tribes and Indian organizations must participate and be involved in discussion about health care at the state as well as the federal level.6 A radical plural feminist model argues that not only is it essential for Native Americans to be involved in policymaking, it is also essential for Native American women to lobby states to give them more power in managing and directing their own health care programs. This serves as a major impetus for the formulation of the Indian Women’s Health Initiative.' 243 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. The Indian Women’s Health Initiative serves to focus efforts on and heighten the awareness of American Indian and Alaska Native women health status. Tne initiative was formulated in 1994. when the director of Indian Health Services envisioned a program that highlighted Indian women’s health as an emphasis area. This emphasis provided an opportunity to reorganize The Indian Women’s Health Steering Committee (TWHSC) which began in 1978. The Committee is composed of 16 tribal representatives and four federal employees. Two of the members are men. The theme of the Committee is “Caring for Indian Women Through the Sacred Journey of Life.” The goal of the committee is to establish a National Indian Women’s Health Network that promotes among other items, increased access to health promotion and disease prevention activities. The Committee is community driven and success is the result of the determination of Indian women to promote health lifestyles in Indian communities. The committee also provides an avenue for community Indian women to advise and make recommendations directly to the Indian Health Services leadership. The committee has been a critical link in providing Native women with crucial health information. An Indian Women’s Health display was developed and presented to congress this past summer during the Health Care Initiative hearings. There has been training on mobilization for policy, such as the Gathering of Native American women the summer of 1997. There is active networking with regional women’s health organizations. 244 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Future plans of the committee include: Exploring the possibility of receiving non-profit organization status; applying for grants to fund special projects; establishing an information clearing house on Indian women’s health; training of community women to increase their ability to network, collaborate, and educate policy makers, tribal leaders, consumers, and others on women’s issues; and to increase the knowledge and skill of community women to address issues such as domestic violence, chemical abuse, and child abuse.8 The Committee has received funding from the Department of Health and Human Services to conduct five “Indian Women in Action” workshops in tribal and urban communities in 1998.9 The Indian Women’s Health Initiative is just one more example of how diversity can enrich knowledge as well as strengthen health care policy for all women especially the poor. FIGHTING FOR THEIR HEALTH: H3SPANICS As this study shows, Hispanic women are virtually in health care crisis. Current data are not adequate to identify the most significant health problems for Hispanics, although a few government reports, such as the Black and Minority Health Volumes,1 0 have begun to identify specific health needs of this group. As shown in this analysis, within the framework of a radical plural feminist model the health profile of Hispanics and their relationship to services take on a new complexity in the context of both class and culture. Culture includes many variables. Class refers 245 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. primarily to socioeconomic status. Often, it is difficult to tell whether a behavior such as low utilization of health services is due to socioeconomic obstacles or cultural beliefs about the degree of need for health care.1 1 It is important to understand how the role of culture for United States Hispanics is interrelated with socioeconomic status and other attributes. It is important to challenge assumptions that guide health care programs and practices in the United States. Many Hispanic health organizations believe a primary goal is to raise Hispanic health consciousness. The means promoting self-help methods and self-empowerment processes as a vehicle for Hispanics taking greater control o f health practices and life styles. In addition, most groups are committed to working toward the goal of bilingual access to quality health care. This encompasses not only quality access but bilingual information and education as well. Especially crucial are culturally relevant material regarding affordable and safe birth control and early prenatal care. Essential as well are laws that free Hispanic women from sterilization abuse. Various national Hispanic organizations actively lobby congress for a ‘single payer’ system. This system, they argue, must guarantee universal coverage and access for all residents of this country regardless of gender. It must include undocumented. ‘They pay taxes for Social Security, Medicare and Medicaid, but are denied the full services those taxes support.”1 2 If undocumented women are not covered, they will not be diagnosed and treated and the health of the public at large will be jeopardized. 246 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Denying health coverage is not a deterrent to immigration. Most people migrate for other reasons. The only access many poor and undocumented have to health services today is through emergency care. They are already avoiding doctors and hospitals until they become desperately ill and need more costly care. Emergency room care is not cost effective. There must be community representation on all governance bodies and advisory boards dealing with health policy, administration and appropriations. Culturally competent health care must be available, including bilingual workers. As the Organizacion Nacional de La Salud de La Mujer Hispanic argues, culturally competent and language appropriate health care is truly a radical idea: The best and most expensive private insurance coverage that is available today does not offer this kind of access. People that are of a different culture and do not speak English are consistently being discriminated against and either are being given delayed health care due to unavailability o f translators, or dangerous health care because they cannot communicate with the provider. This occurs both in private and publicly funded health facilities.1 3 The current situation is in conflict to Title VI of the Civil Rights Act of 1964. According to Title V T : “no person in the United States shall, on the ground of race, color, or national origin, be excluded from participation in, be denied the benefits of or be subjected to discrimination under any program or activity receiving federal financial assistance.”1 4 There must be a guarantee that community clinics that serve specific ethnic communities and are providing culturally competent services will continue to be funded. 247 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. The proposals of some legislators would make independent projects like the Santa Cruz model discussed in Chapter One nearly impossible by limiting access to health care under any federal- and state-funded health programs to U.S. citizens. Some would even impose limitations on naturalized citizens. Under these proposals, legal permanent residents, as well as aliens “Permanently residing in the U.S. under the color of law,” would have not access to publicly sponsored health care.1 5 The U.S. has always been and continues to be a country o f immigrants. At least half o f immigrants are women, and recent studies on those labeled ‘"undocumented” indicate that women may comprise the majority of non-citizens entering the country. The health of women and the population as a whole depends upon health care access for all its members, including the foreign-born, regardless of their citizen or alien status. This affects the health of all communities. 4 FIGHTING FOR THEIR HEALTH: ASIAN/P ACfFIC ISLANDER WOMEN Although Asian Americans make up only three percent of the nation’s population, as this study indicates, they are one of the fastest growing communities in the country. Forty percent of Asian communities reside in California alone comprising ten percent of that state’s population.1 6 One can estimate from this data alone that an Asian woman will enter the health care system at some time in her life. 248 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. According to the radical plural feminist model of health, the sheer complexity of this ethnic collection must not obscure human variability. Both the group complexity and individual differences must be recognized and incorporated into programs and people’s consciousness to provide culturally sensitive and appropriate services for all women. Health activists believe that there must be continuous lobbying at both the federal and state level to address the unique needs of Asian women. Stereotypes of Asian women have hindered progress in creating healthy communities. One of the preventive stereotypes stated earlier is the “model minority myth” that must be erased before progress is made. This myth obscures the serious health problems faced by Asian women. Further, it has often times been used to justify omitting Asian women from federal funding and some special minority programs. This stereotype also conveys the impression that “equality of opportunity and societal acceptance have been gained, and the problems in institutional access, or racial prejudice have been fully resolved.” 1 7 Thus, by portraying an exemplary image of Asians, this myth serves to justify the exclusion of Asian women from the health care policy debate. Many o f the goals o f Asian health care activists are similar to those of Hispanics. A demand for bilingual and bicultural health information and services is a top priority. Asian women activists believe also that the government should mandate that health care professionals be trained in cultural awareness in order to adequately address specific needs. 249 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. A model program was established in 1978 called the Asian Health Project. This project seeks to address and meet the need for health care in the Asian community in Los Angeles county. This project does offer bilingual and bicultural health information and care. It serves as a model for health care policy makers at the state and federal level in that it has targeted many diverse Asian communities and the early studies indicate with a great deal of success.1 8 This program and others is important for all communities in that it is demonstrative of how diverse communities can be served to benefit all members of society. 5 FIGHTING FOR THEIR HEALTH: OLDER WOMEN The economic and health situation of older women requires deep structural and policy changes to redress inequities and provide access to basic resources, including Social security, housing, nutrition, health, and long-term care and broad-based social reforms to end the life course social and economic inequities experienced by women. The attendant economic and health issues confronted by aging and minority women challenge the very structure of our social institutions. Women’s income issues are an essential part of the health policy debate. Policies are needed to abridge and compensate for the gendered division of labor and lifelong discrimination that women and people of color experience. Many older women have established themselves as leaders of grassroots organizations, national programs, and government. They live in an era characterized both 250 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. by expanding cultural diversity and increasing anxiety about the future o f the next generation. A radical pluralist feminist model of health geared toward necessary policy changes to improve the lives of older women who are economically disadvantaged must take into consideration the life course experience and sociocultural patterns of other disadvantaged groups, regardless of age, race, or gender. As the discussion of older women who work as unpaid caregivers to grandchildren illustrates in Chapter Three, older people live age-interconnected lives, and what affects their children, grandchildren, and other family members often affects them. These changes will requires a shift that encourages U.S. policies to take into consideration the lifetime work experiences of the many diverse groups within society and the structural impediments to gender justice within these groups. Many organizations, including the Older Women’s League, have pressured the National Institute on Aging (NIA) to work actively on improving older women’s health. As a result, the NIA has launched several initiatives throughout the United States. Two that are particularly crucial for older women are: an initiative to develop and test new ways for families and friends to manage the daily activities and stresses of caring for people with Alzheimer’s disease. The five-year effort is looking primarily are caregivers of older people with mild to moderate Alzheimer’s with a focus on African American and Hispanic families. An initiative studying women’s health that includes a large proportion of African Americans, Hispanics, and Asian Americans. The University of California at Davis and San Francisco and Kaiser Permanente of Oakland will evaluate hormonal changes, diet, body size, smoking and reproductive factors of Chinese and white women living in the Bay area. And the University of Michigan, Ann Arbor, will compare bone mass and bone loss of African 251 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. American and white women. The researchers will study risk factors for obesity, osteoporosis, hypertension, and arthritis.1 9 7 HEALTH CARE IN THE NEXT CENTURY FOR WOMEN It would be a mistake to assume that just because one recognizes the need to value women’s voices things will change. The job of articulation is immense and must be contributed to by so many voices. Two concepts that are central to a radical plural feminist model of health care as suggested by Helen Rodriguez-Trias are totality and centrality.2 0 Totality refers to a holistic concept of health, in which mental and physical aspects are equally important and in which the health problems of women are seen as “deeply implanted in the statuses that derive from their multiple social relations.”2 1 When discussing and formulating women’s health policy, policymakers must look at the larger picture. Women occupy not only reproductive roles but also are productive workers; not only consume health care as patients but also provide health care. As this analysis has demonstrated, experiences of violence, poverty, discrimination, and socialization have critical impact on women’s health. Centrality requires that women’s experiences, the ways in which they view their own health and illness, must be the basis for developing new knowledge in women’s health. One consequence of centrality is to focus attention on understanding women’s diverse experiences, which have been omitted in many analyses of health issues.2 2 In other words, policymakers must take seriously the experience of women as women themselves describe it, not as the patriarchs imagine it to be. Such important issues as 252 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. weight control and eating disorders can be illuminated by understanding women’s experiences with their bodies and what bodily experiences mean to women. Centrality also refers to the re-centering of health relationships, away from the hierarchical model of the “expert” professional who has all the knowledge to care for an ignorant patient and toward the recognition that the patient brings important information to the interaction and decision making needs to be shared. There are many examples of how health practice and research have not started from where women are, often to the detriment of women. It is possible to integrate the concept of centrality into the health care system by including women in all aspects of their own health care. This is a time of historic change in health care in the United States, and what happens here will affect other areas of the world. It is particularly appropriate to insist on the full representation of all women’s voices as health care reform is developed. Key policy objectives in women’s health care are to reduce the financial and non-financial barriers to access to care among all segments of the female population and to design integrated delivery systems that are responsive to women’s needs within the context of their diverse, unique communities. An example of the above are innovative women’s health centers, such as the one in Santa Cruz which attempt to reduce barriers associated with fragmented care and to integrate a wide array of services in a women-centered setting. These centers provide a valued health care option for women of all socioeconomic levels who seek comprehensive services. 253 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Some o f these centers are the usual source of care for traditionally underserved segments of the female population and provide essential services that may not be available to these patients elsewhere in the community. Therefore, policies that encourage the development and survival of comprehensive women’s health centers are likely to increase the accessibility o f basic health care to many women.2 3 8 CHALLENGES: THE WOMEN’S HEALTH INITIATIVE If one protests long and loudly enough, even the United States Congress will eventually take note. Starting several years ago, a package of bills known as the Women’s Health Equity Act24 was introduced in Congress due to the leadership of several senior female members of Congress. The package of 25 bills, most still pending action, addresses research, services, and prevention in such area heart disease. Many activists hope to see action taken before the end of this century. Nevertheless, Congressional attention can result in federal action even without legislation. For example, in 1993 Senator Barbara Mikulski chaired a hearing on the continued problem of unnecessary hysterectomies. This has led to federal funding for studies of the effectiveness of, and alternative approaches to, hysterectomy.2 5 In addition to these legislative efforts, the National Institutes of Health launched the Women’s Health Initiative (WHI), which resulted in the allocation of S600 million during this and part of next decade (15 years) to research heart disease, osteoporosis, and 254 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. breast cancer.2 6 The WHI began recruiting women in 1994 and closed recruitment February this year. WHI successfully recruited more than 130,000 post-menopausal women nationwide. Researchers will release later this year first batch of data, a compilation of baseline statistics describing the participants.2' Scientists hope to resolve the question of whether hormone replacement therapy helps prevent heart disease and whether this therapy increases the risk of breast cancer. They will also examine whether low-fat diets help prevent some diseases and whether calcium and vitamin D supplements prevent osteoporosis. Scientists’ findings will probably not become available until 2005 or later. The lay press has scarcely reported on WHI. Yet professional journals like The Journal of the American Medical Association and Science have detailed strong and widespread criticisms o f the study, which some suspect is more politically than scientifically correct. Many scientists, including many women scientists, have pointed out that the study is too large and ultimately undoable. In the WHL, thousands of women will be expected to take daily hormone replacement and vitamins and modify their diets - reducing fat intake to a difficult-to-maintain 20 percent of total calories - all at the same time. Breast cancer researchers, too, are concerned that the trial might come to an abrupt halt once there’s enough evidence that various regimens under scrutiny protect against heart disease. For the breast cancer segment to work, the study must run at least a decade. There has also been criticism that WHI will be regarded as solving the gender gap problem when it simply is filling in some glaring omissions in medical knowledge about 255 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. postmenopausal women. There are no studies of that magnitude planned for conditions affecting women of childbearing years, who have been most neglected by science, particularly in drug research, because of fears of fetal harm and legal liability. Though many critics have pointed out that not every woman o f childbearing years is at equal risk of pregnancy - lesbians, for example, many scientists would rather steer clear of this group 2 8 More importantly, there are many risks to participants of the WHI that have not been reported clearly. 2 9 Certainly risks of participation in the study should be communicated clearly to members of the public and their health care providers. Again, the study will examine the effects of diet and hormone replacement on the risks of coronary heart disease, osteoporosis, and breast cancer. Drs. Eaker and Han, directors of the study, nicely summarize the death rates associated with heart disease the incidence of hip fracture in women who take estrogen as compared with those who do not take estrogen. They conclude that “the existing epidemiological data indicate that participation in the WHI trial will result in a small net favorable effect attributable to estrogen replacement.” However, they trivialize the increased incidence of breast and endometrial cancer associated with estrogen therapy. That there is a 30 percent increase in the incidence of breast cancer after 15 years of estrogen use needs to communicated to the patients. Although these cancers may not result in the death of the affected women, they are surely more than just a nuisance. If a breast cancer I cm or one diameter develops in a woman, she will require a mastectomy or lumpectomy with radiation and will need adjuvant therapy. Surely this is 256 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. more than an inconvenience and will dramatically change the woman's life and that of her family.3 0 In addition, if endometrial cancer develops while a woman is receiving estrogen- replacement therapy, she will require a total “abdominal hysterectomy and bilateral salpingo-oophorectomy”.3 1 The emotional and physical impact of this surgical procedure must not be underestimated. Nevertheless, the WHI could be an important study. It will possibly answer questions about the relation of hormone replacement and diet to heart disease, cancer, and osteoporosis in women. However, before they enroll in this landmark study, patients deserve a change to give truly informed consent, which should include the provision of information on the incidence of cancer associated with estrogen replacement, not just death rates. The WHI has its ardent supporters, too, including the ex-representative Pat Schroeder. “When people complain that the Women’s Health Initiative is too much too soon,’ I have to ask, isn’t it better than too little too late? The reason it’s so big is because women have been left out o f so much for so long,” she said.3 2 Nevertheless, some scientists and women’s health advocates have expressed doubts that official words will be translated into official action, particularly in tight economic times. ‘Too often we have seen cutbacks in overall research funding just when that funding would benefit a particular group that has been ignored,” the president of Chicago’s Cook County Hospital, Ruth iV I. Rothstein, testified at one of three roundtable meetings o f women’s health advocates in 1991.3 3 257 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Regardless, most health activists believe the Initiative is a start, however, key areas of research are still under-funded. The National Cancer Institute, for example, has not adequately funded any studies of environmental factors that affect breast cancer risk. This is despite mounting evidence implicating environmental carcinogens as a cause of several cancers, including breast cancer.3 4 Ironically, the National Cancer Institute’s major recent contribution to breast cancer prevention research was a study of tamoxifen, a fairly potent drug with some significant risks and side effects. Activists have criticized this clinical trial as a study in “disease substitution” rather than disease prevention. 9 MOVING TOWARD PLURALISM: RECOMMENDATIONS There is change slowly happening on the horizon. For example, there has been an incremental metamorphosis of the medical profession. Certain aspects of medicine are becoming feminized. The number o f women physicians has quadrupled in the last twenty years, and women are about to dominate at least one specialty, OB-GYN. However, a 1996 report from the Feminist Majority Foundation and the American Medical Women’s Association pointed out that women are still underpaid and underrepresented in these positions of power. There is also no evidence, as many feminists hope, that large numbers of women physicians are or will humanize medicine by rejecting its largely male-oriented, bio-medical views.3 5 258 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Medical education is steeped in these views, and institutional changes, which are needed, often come slowly or not at all. Nevertheless, sheer numbers - both of women doctors and women patients - may be enough to bring some needed practical changes both in medical school curricula and in physicians’ offices, where ignoring women’s needs could be a costly mistake. Some change has already occurred. For example, most medical schools now require students to attend a special program on communicating with female patients. Even the American Medical Association has taken up causes once the lonely province of feminists, from violence against women as discussed to women’s general health. The AMA established a contingency fund for women’s health research and education programs as part of its Education Research Foundation and launched the Women’s Health Campaign, which has produced educational materials and television programming spotlighting women’s health concerns.3 6 Though the public may come across an occasional newspaper article or television special, physicians are virtually bombarded by medical journal articles on research inequities and women’s health. Not only did a new journal debut in 1992 — The Journal of Women’s Health - journals such as The Journal of the American Medical Association and The New England Journal of Medicine have hammered fearlessly away at the controversy. Many female physicians have used The New England Journal of Medicine as a forum to call for a general awakening to the fact that women have unique health problems that deserve the same attention and care as the health problems of men. 259 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Though the general public has been barely aroused, doctors are now being forced to listen. But, this is not enough. To survive beyond mere fad the women’s health movement needs a strong and broad diverse constituency that will make it politically impossible to underfund women’s health issues or to focus more attention on the health concerns of middle-class white men. The makers of law and policy need to see a vision of all women’s concerns not just a vision of health from a select few. The women who fought for and won the fight to have babies the way they wanted - or not to have babies at all- need to join forces with those women still battling for incorporation. They need to help create a consumer demand for more and better research on diverse health issues and for a new paradigm that doesn’t exclude or fail to view them within the context of their lives. When women join forces, they need to maintain the pressure until lawmakers and policymakers recognize the many dimensions needed in creating healthy communities. The liberal feminist visions o f packing Congress with women is not realistic, it may not even be doable. The following paragraphs are suggested ways of creating healthy communities for women from a pluralist feminist perspective. These suggestions summarize many key points discussed throughout this analysis. Some are workable in the current system, while others are suggestions of new ways to think about women’s health. Improving services to provide integrated women’s health care. There is an increasing need to focus on physician’s training in women’s health that moves beyond 260 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. the current bio-medical approach. This includes training in areas not always given enough attention, such as violence detection and treatment. Given the high level o f contact with health care providers, victims of violence could benefit from a professional staff trained to recognize and care for them. Unfortunately, most physicians have not been taught how to deal with violence, although as discussed, recent initiatives have been undertaken to improve their awareness. This training also should include educating health professionals on the cultural issues of the communities in which they practice. If a physician chooses to practice in a predominantly Chinese community, for example, maybe she should be required to learn the language. Comprehensive benefits. O f greatest concern to many women is what services and programs will be covered by health insurance. This may well be the issue that draws most women into activism on the matter of health care reform. Women want to know if all their health care needs will be financially affordable. The ideal program for most communities of women is the universal coverage system that failed early on in the Clinton administration. Women health activists, however, do not believe that this proposal is a non-issue for the future. Under this system no one who resides in the United States would be excluded from receiving benefits or denied access to care. Under this type of system there would be no financial barriers to care. At its best, this would involve having no co-payments, no deductibles, and no extra charges for covered services. (Out of pocket payments required at the health care visit often 261 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. represent a major barrier for lower income people.) Critical to eliminating financial barriers to access is also guaranteeing equitable distribution of resources once women receive access. As evident throughout this study, many communities of women simply don’t receive services as a result of the community they live in. It is essential for women as well, that if we move toward national health care coverage in the future, there is equitable financing of the program Who will pay, is the key question. Poor women should not bear the brunt of creating this type of system. Quality of care. Women certainly do not want “more of the same” in cases where current care is inadequate. Proposals to guarantee good quality o f care will have to include women’s involvement in assessing quality o f care. Quality of care includes the establishment of diverse standards set by the diverse communities where the care occurs. Ongoing research and evaluation are vital to care assessment and may help eliminate unnecessary costs as well as improve quality of care. Disease prevention and health promotion. Without placing a greater emphasis on diverse primary care, it is unlikely that even modest goals can be achieved in the area of disease prevention and health promotion. Any new proposals health care programs must acknowledge the importance of non-medical factors (as suggested by many Native American women as well as Asian American women) on health status. Public community health measures that address the impact of the environment and culture, for example, must be included. Furthermore, more community-based care settings are needed. We can and should build upon experience with community women’s health centers, which currently 262 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. provide comprehensive primary care services to many indigent women. Their expertise in providing ethnically, linguistically, and culturally appropriate care is an important resource to draw upon. Research. The government should fund additional research to investigate new approaches to disease prevention and health promotion for women. The Women’s Health Initiative represents one such effort, but it does not adequately address many of the concerns of women especially those discussed in this analysis that stem from diverse communities of women. It is critical that any health program has publicly responsible mechanisms to assure responsiveness to all women’s concerns. This requires some degree of community input into the nature and type of services needed. Furthermore, an adequate decision making role for consumers needs to be addressed in any reform proposal. Almost two decades ago. Congressman Ronald Dellums offered an important step in this direction in his National Health Service Act3/, which incorporated directly elected community health boards (to third consumer and one third workers) as well as indirectly elected regional and national health boards. 10 CONCLUSIONS Women have had too many years of “experts” (primarily male) poorly defining what their health problems are and how they ought to be solved. Policymakers solely focused on questions of financing must hear from women, especially women of color, 263 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. and older women, who care about the other equally important questions as well. A major goal of a radical plural women’s health movement should be to change the social distribution of medical knowledge from exclusive property of certified male experts to women themselves. Quite possibly the only way for this to occur, as has been suggested by many health activists, is to create a women’s health specialty. The leaders of several major medical associations, including the American College of Obstetricians and Gynecologists and the American Academy of Family Physicians, have questioned the need for a new specialty that would no doubt draw away from their best paying customers. Women not only make health decisions for themselves but for their families as well. As Weisman states: the women’s health market is a lucrative one, and many hospitals, angling for a greater share, have established women’s health centers, combining a variety of specialists, from gynecologists to psychiatrists, to provide woman- friendly care under one well-decorated roof. There are about 200 such centers across the United States, most of them successful, strongly suggesting that there is a need for a women’s health specialty. It may indeed, as the medical organizations fear, draw women away from their other practitioners.3 8 Many feminists have suggested that there is a basic violation of civil rights where men, who are not at risk from reproduction, control women who are. This disparity between controllers and at-risk population is not paralleled in any other area of life. What cannot be ignored as well is the disparity in health that exists among women themselves. Health will never be achieved unless this disparity is addressed and 264 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. eliminated. An ideal radical plural model is the only way this can happen. This model should include the following components: 1) The creation of a women’s health specialty that is diverse and treats women in a holistic fashion taking into account gender, race, class, ethnicity, and age in its approach to creating health communities; 2) An increase in health research grants. These grants would be devoted to researching the health needs of underrepresented groups of women; 3) All laws concerning female health especially in areas where abuse has occurred like reproduction, abortion, and sterilization would be removed from the court and legislative systems and reviewed instead by an outside women’s health organizations; 4) Congress would never convene hearings on health policy without significant representation from diverse groups of women across the nation; and finally; 5) Access to comprehensive quality health care for all women would be the primary' goal. Chapter One of this study states that a new model of health care would create more effective policy in the United States for all women. The evidence presented throughout reflects this notion. The data shown in Chapters Three and Four support the hypotheses that gender stereotyping significantly affects the formation and implementation of public health policy and further if biases can be eliminated health of women improves. In addition. Chapter Five indicates that access is critical for all groups of women. The type of access is directly related to the woman’s quality of care. Economics plays a crucial role for if poverty can be eliminated the health of all people will improve. Dworkin writes: “feminism requires the firm, unsentimental, continuous recognition that one is associated with all women not as an act of choice but as a matter of fact. That fundamental knowledge is an almost unbearable test o f seriousness.”3 9 This 265 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. analysis applied this test of seriousness to women’s health highlighting the realization that creating health involves all women, especially those valuable voices that have for too long been silenced. 266 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. CHAPTER ENDNOTES 1 Carolyn DeMarco. “Medical Malepractice,” in Karen Hicks, ed., Misdiagnosis: Woman as a Disease f Allen town: People’s Medical Society, 1994). 2 Angela Davis. “Sick and Tired of Being Sick and Tired: The Politics of Black Women’s Health,” in Evelyn C. White, ed. The Black Women’s Health Book (Seattle: Seal Press, 1990) 55. 3 Policy Report of the Commonwealth Fund Commission on Women’s Health. Prevention and Women’s Health: A Shared Responsibility (Columbia University: The Commonwealth Fund, 1996) 8-12. 4 Michael H. Trujillo, M.D, Assistant Surgeon General, Director, Indian Health Services. “State of the Indian Health Service: Challenges and Change,” (Washington, D.C.: Indian Health Services, 1997). 5 Michael H. Trujillo, M.D, “State of the Indian Health Service: Challenges and Change,” 2. 6 Michael H. Trujillo, M.D, “State of the Indian Health Service: Challenges and Change,” 3. Intertribal Council of Michigan. “Indian Women’s Health Initiative,” (Indian Health Services, 1994). 8 Intertribal Council of Michigan. “Update: Indian Women’s Health Initiative,” (Indian Health Services, 1996). 9 Intertribal Council of Michigan. “Update: Indian Women’s Health Initiative,” Indian Health Services, 1997). 1 0 U.S. Department of Health and Human Services. “Report on the Secretary’s Task Force on Black and Minority health: Infant Mortality and Low Birthweight,” (Washington, D.C.: U.S. Department of Health and Human Services, 1986) vol. 4. 1 1 Ruth Zambrana. “A Research Agenda on Issues Affecting Poor and Minority Women: A Model for Understanding Their Heath Needs,” Women and Health 1987:137-60. 12 • * Organizacion Nacional de La Salud de La Mujer Hispanic. “Essential Principles for Responsible Health Reform,” National Institutes of Health Archives on Organizations, 1997). 267 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 1 3 Organizacion National de La Salud de La Mujer Hispanic. “Essential Principles for Responsible Health Reform,” 2. H Civil Rights Act of 1964, Title VI. 1 5 Janet M. Calvo. “Health Care Access for Immigrant Women,” in B C ary Moss, ed. Man- Made Medicine: Women’s Health. Public Policy, and Reform (Durham: Duke University Press, 1996) 161-83. 1 6 U.S. Bureau of Census. “Asian-Americans: A Status Report,” 1990. 1' Kimberly A. Huisman. “Wife Battering in Asian American Communities: Identifying the Service Needs of an Overlooked Segment of the U.S. Population,” Violence Against Women Vol. 2 No. 3, September 1996,^78-79. 1 8 Asian Health Project. “"Statement of Goals,” National Institutes of Health, 1997. 1 9 National Institute on Aging. “NLA Programs and Research, 1998”. 20 Helen Rodriguez-Trias. “Women’s Health, Women’s Lives, Women’s Rights,” American Journal o f Public Health 1992 82:663-64. 21 Rodriguez-Trias, “Women’s Health, Women’s Lives, Women’s Rights,” 663. 22 Rodriguez-Trias, ""Women’s Health, Women’s Lives, Women’s Rights,” 664. 2 3 Carol S. Weisman, Ph.D., Barbara Curbow, Ph.D. and Amal J. Khoury, M.P.H. “Case Studies of Women’s Health Centers: Innovations and Issues in Women-Centered Care,” Report presented to the Commonwealth fund by Department of Health Policy and Management, School of Hygiene and Public Health, John Hopkins University, March 1997.~ 24 Women’s Health Equity Act of 1993 is a bill to promote equity in the delivery of health care to American women through expanded research on women’s health issues and through improved access to health care services, including preventive health services. See HR. 3075 (Rep. Schroeder). 25 Judy Norsigian. "The Women’s Health Movement in the United States,” in Kary Moss, ed. Man-Made Medicine: Women’s Health. Public Policy, and Reform (Durham: Duke University Press, 1996) 86. 268 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 2 6 It should be noted that this project was funded during the tenure of the first female director of NIH, Dr. Bemadine Healy. Dr. Healy is now editor of the Journal of Women's Health, which receives substantial funding from the pharmaceutical industry. 2/ The Women’s Health Initiative, backgrounder/’ National Institutes of Health, November 1997. 2 8 Eileen Nechas and Denise Foley. Unequal Treatment: What You Don’t Know About How Women are Mistreated bv the Medical Community (New York: Simon & Schuster, 1994) 227. 2 9 Carolyn D. Runowicz, M.D. “More on the Women’s Health Initiative,” New England Journal of Medicine 1994 Vol. 330, No. 22 1619-20. 3 0 Runowicz, M D., “More on the Women’s Health Initiative,” 1619. 3 1 Runowicz, M.D., “More on the Women’s Health Initiative,” 1619. 3 2 Schroeder, Patricia. Ex-congressional co-chair of the Congressional Caucus for Women’s Issues. Interview printed in the American Medical Women’s Association Journal, May II, 1992. 3 3 Nechas et al., Unequal Treatment: What You Don’t Know About How Women are Mistreated bv the Medical Community. 229. 3 4 Nechas et al.. Unequal Treatment: What You Don’t Know About How Women are Mistreated by the Medical Community. 229. 3 5 Congressional Caucus for Women’s Issues. “Women’s Health Equity Act Update,” Washington, D.C., 1992. 3 6 Congressional Caucus for Women’s Issues. ‘W om en’s Health Equity Act Update,” Washington, D.C., 1992. 3/ National Health Services Act of 1993 is a bill to establish a United States Health Service to provide high quality comprehensive health care for all Americans and to overcome the deficiencies in the present system of health care delivery. See H.R. 2061 (Rep. Dellums). 3 8 Carol S. Weisman, Ph.D., et al., “Case Studies o f Women’s Health Centers: Innovations and Issues in Women-Centered Care.” 269 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. 3 9 Andrea Dworkin. Pornography: Men Possessing Women (New York: Perigree Books/Putnam, 1979) 205. 270 Reproduced with permission of the copyright owner. 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Asset Metadata

Creator Anderson, Suzanne Jane (author)

Core Title Alternate models of women's health care policy in the United States

School Graduate School

Degree Doctor of Philosophy

Degree Program Political Science

Degree Conferral Date 1998-12

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag health sciences, health care management,health sciences, public health,OAI-PMH Harvest,political science, general,sociology, public and social welfare,women's studies

Language English

Contributor Digitized by ProQuest (provenance)

Advisor [illegible] (committee chair), [illegible] (committee member)

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c17-402028

Unique identifier UC11350333

Identifier 9930474.pdf (filename),usctheses-c17-402028 (legacy record id)

Legacy Identifier 9930474.pdf

Dmrecord 402028

Document Type Dissertation

Rights Anderson, Suzanne Jane

Type texts

Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Access Conditions The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the au...

Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus, Los Angeles, California 90089, USA