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Communications and messaging strategies to encourage African-American women to practice safer sex/HIV prevention measures

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Communications and messaging strategies to encourage African-American women to practice safer sex/HIV prevention measures

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COMMUNICATIONS AND MESSAGING STRATEGIES TO
ENCOURAGE AFRICAN-AMERICAN WOMEN TO
PRACTICE SAFER SEX/HIV PREVENTION MEASURES

by
Miya A. Walker

A Thesis Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
MASTER OF ARTS
(STRATEGIC PUBLIC RELATIONS)

May 2012

Copyright 2012 Miya A. Walker

ii
Acknowledgments
Thank you, Lord! I thank God for guiding me through this process and for the
strength to keep going when I wanted to quit. I also want to acknowledge my mentor and
friend, Dr. Lori Baker-Schena for encouraging me to pursue this topic and for her
continued support. Thank you, Professor Laura Jackson for your amazing insight and
direction on this project and throughout the program. I could not have completed this
project without you. Big hugs and kisses to my family, colleagues and dear friends who
encouraged and prayed for me during this writing process – I am eternally grateful.
iii
Table of Contents
Acknowledgments ii
List of Figures iii
Abstract iv
Preface v
Introduction 1
Chapter 1: The History of HIV/AIDS in America 2
Chapter 2: The U.S. National HIV Strategy 4
Chapter 3: A Look at Prior U.S. HIV Strategies 14
Chapter 4: The Evolution of HIV/AIDS Perceptions 19
- the Gay Cancer

Chapter 5: HIV/AIDS is the New Black 24
Chapter 6: A Female Epidemic: Factors Contributing to HIV 31
Among Black Women

Chapter 7: The Illusion of Invulnerability: Are Black Women in 46
Denial about their HIV Risk?

Conclusion 48
Bibliography 64
Appendices
Appendix A:Interview – Charles McWells, HIV Prevention 74
Services Manager, Los Angeles Centers for
Alcohol and Drug Abuse; Director HIV,
Grace Methodist United Church
iv
Appendix B:Interview – LaWanda Grisham, AIDS counselor, 81
John Wesley Clinic for Health
Appendix C:Interview – Stephen Simon, AIDS Coordinator, 91
City of Los Angeles
Appendix D:Interview – Marvelyn Brown, Author, The Naked Truth: 97
Young, Beautiful and HIV Positive
Appendix E:Interview – Phil Wilson, CEO/Founder, Black AIDS 100
Institute
Appendix F:Online Survey Questions 106

v
List of Figures
Figure 1. Estimated Rate of New HIV Infections, 2009 4
Figure 2. National HIV/AIDS Strategy 7
Figure 3. Ad: HIV/AIDS from 1987 – 1992 11
Figure 4. Ad: HIV/AIDS from 1997 - 2002 12
Figure 5. Ad: Testing Makes Us Stronger (2010) 13
Figure 6. Ad: Understanding AIDS (1987) 21
Figure 7. Persons Living with AIDS by City/Area for 26
SPA 6 – South Los Angeles

Figure 8. Ad: “Don’t Just Worry About HIV. 27
Do Something About it” (1989)
vi
Abstract
On June 5, 1981, the first cases of AIDS were reported in the Centers for Disease
Control & Prevention‘s Morbidity and Mortality Report
1
. Today, approximately 50,000
Americans become infected with HIV annually, and 16,000 people with AIDS died in
2008, according to the Centers for Disease Control and Prevention
2
(CDC). As a result,
nearly 1.2 million Americans are living with HIV, and that number continues to grow.
While HIV/AIDS has been a national epidemic, African Americans carry the largest
burden of the disease.
The new face of HIV/AIDS has shifted from gay white males in the 1980’s to
African Americans in the new Millennium. Looking at the current state of affairs, black
women are particularly at higher risk with astounding HIV infection rates. A careful
examination of the factors, including psychological, societal, economical and behavioral,
that contribute to the increase of HIV infection rates among black women is the subject
of this research. Along with the findings, the author provides recommendations on how
strategic communications can be used to help in the fight against HIV/AIDS among black
women.

1
“30 Years of HIV/AIDS,” US Department of Veteran Affairs, http://www.hiv.va.gov/provider/campaigns-
30years-index.asp

2
Report: High Impact – HIV Prevention Strategy to reduce HIV infections in the United States – Centers for
Disease Control & Prevention
vii
Preface
Research Methodology
Primary Research - Qualitative (Interviews)
The author conducted a series of 1:1 interviews with leading HIV activists and
key community leaders in January 2012. A total of six telephone interviews were
completed with varying questions, including: Phil Wilson, CEO/Founder, Black AIDS
Institute, Los Angeles; Marvelyn Brown, Author, Young, Beautiful and (HIV) Positive,
New York; Dr. Kevin Fenton, National Center for HIV/AIDS, Viral Hepatitis, STD and
TB Prevention, Centers for Disease Control and Prevention, Washington, D.C.; Charles
McWells, HIV Prevention Services Manager, Los Angeles Centers for Alcohol and Drug
Abuse; Director HIV Ministry for Grace Methodist United Church; LaWanda Grisham,
AIDS Counselor, John Wesley Clinic for Health, Los Angeles; Stephen Simon, AIDS
Coordinator, City of Los Angeles Department of AIDS, Los Angeles
Quantitative (Online Survey)
Quantitative research was conducted through a voluntary survey administered
through social media. The survey was distributed to 100 Facebook participants and was
conducted January 9-25, 201. Targets were part of the researcher’s friends list and
targeted subjects ages ranged from 18-50. Recruitment of respondents used a non-
scientific convenience sample methodology. Follow-up Facebook messages and emails
were also sent to encourage more participation and for respondents to pass the survey
along to other friends and colleagues who fit the criteria of the questionnaire for the
audience.
viii
The overall response rate for the survey was 90 percent, and was calculated as a
ratio of completed surveys among those invited to participate. 90 (# of completed
surveys) / 100 (# of Facebook friends contacted) = 0.90 x 100 = 90 percent
Secondary Research
Online secondary research was conducted from a variety of sources, including
academic journals such as American Journal of Health Studies and Health Education and
Behavior. Additional research included sources from several medical aarticles and
websites, media outlets, HIV community group materials, HIV newsletters published by
the U.S. Centers for Disease Control and Prevention (CDC), fact sheets, data analysis,
and reports on HIV and the African American community with specific focus on women.
1

Introduction
AIDS remains the leading cause of death among Black women ages 25-34

(Left Behind, August 2008)

Why?
This thesis addresses that very question: “Why is the number of HIV infections
among African-American women continuing to increase?” Over the course of this
research exploration, we will specifically examine some of the driving factors that are
believed to be inextricably linked that contribute to the continued increase of new
HIV/AIDS infections among low-income black women. To do so, we will take a broad
view of federal HIV policies that have impacted African-American women; how
perceptions about HIV/AIDS evolved from early labels as a “gay white disease” to its
newer designation as a “black disease”. We also examine specific factors faced by
African-American women, including social, economic and racial constraints, which may
make them more vulnerable to HIV exposure. Looking at these factors will provide
clearer insight into how communication and messaging strategies might be employed as a
tool to raise the volume on the national dialogue around black women and HIV/AIDS.
Ultimately, the goal of this report is to determine appropriate strategic communications
approaches that might be added to the HIV toolbox to combat this disease.
As such, an outline of strategic public relations communications will accompany
this presentation, which will integrate the report’s findings and offer recommendations
based on data extrapolated from the author’s primary and secondary research, including
one-on-one interviews with local and national AIDS activists and a survey conducted
through social media.
2

Chapter 1

The History of HIV/AIDS in America

From October 1980 to May 1981, physicians from three separate Los Angeles
hospitals treated five young homosexual men for a rare pneumonia called Pneumocystis
pneumonia (PCP). PCP is an opportunistic lung infection that is generally exclusive to
patients with severely suppressed immune systems. At the time, the diagnosis of PCP
raised eyebrows because it was unusual for the disease to show up without clinical proof
of previous immune deficiency in relatively healthy people. As such, doctors suggested
that since the patients were all homosexual and consequently, all were positive for
Cytomegalovirus, a herpes virus, that there could be an association between the disease
and its acquisition through sexual contact
3
.
Subsequently, around the same time, physicians in New York City reported eight
cases of an aggressive form of Kaposi's Sarcoma (KS), a rare benign cancer that is
generally found in older patients and characterized by raised lesions found especially on
the upper body and face
4
.
Collectively, these cases grabbed the attention of the U.S. Centers for Disease
Control (CDC). On June 5, 1981, descriptions of the five cases of PCP found in Los
Angeles were printed in the CDC‘s Morbidity and Mortality Report and sent to CDC
experts in parasitic and sexually transmitted diseases prior to its publishing (MMWR,
First Reports of AIDS, p. 429). The report included editorial notes outlining the cases as
“cellular-immune dysfunction related to a common exposure” and a “disease acquired

3
Kaposi's Sarcoma, http://www.nejm.org/doi/full/10.1056/NEJM200004063421407

4
Kaposi's Sarcoma, http://www.nejm.org/doi/full/10.1056/NEJM200004063421407
3

through sexual contact” (MMWR, First Reports of AIDS, p. 429). The report prompted
additional case reports from New York City, San Francisco, and other cities.
At the time these cases were reported, doctors did not know that their discoveries
marked the beginning of a 30-year battle that would reshape the national health care
discussion, making what we know today as HIV (human immunodeficiency virus) the
cause of AIDS (acquired immunodeficiency syndrome) – one of the greatest health
epidemics to face our nation and the globe.

4

Chapter 2

The U.S. National HIV Strategy

After three decades of the disease in the United States, approximately “1.7 million
people (were) estimated to have been infected with HIV, including over 615,000 who
(had) already died and more than 1.1 million estimated to be living with the disease
today
5
. In fact, “Every 9½ minutes, someone in the U.S. (was being) infected with HIV,”
according to the CDC reports.

In the decades since those first cases were detected in Los Angeles and New York
City, HIV/AIDS has become a national epidemic affecting all races and both genders.
However, African Americans have been among the hardest hit by the disease, including
black women. According to the CDC’s 2009 data, among newly-infected women with

5
U.S. Statistics, AIDS.org http://www.aids.gov/hiv-aids-basics/hiv-aids-101/overview/statistics/

Figure 1. Estimated Rate of New HIV Infections, 2009 (Source: CDC)
5

HIV, 57 percent occurred in blacks, 21 percent were in whites, and 16 percent were in
Hispanics/Latinas. (CDC, HIV Among Women, 2010)
In 2009, the rate of new HIV infections among black women was 15 times that of
white women, and more than three times the rate among Hispanic/Latina women. (CDC,
HIV Among Women, 2010)
In response to the spiraling HIV epidemic, in 2010, the U.S. Office of National
AIDS Policy (ONAP), which is part of the White House Domestic Policy Council,
launched a robust HIV/AIDS effort and committed $3 billion
6
to combat the disease and
raise awareness. More importantly, ONAP reported that for the first time, the nation’s
HIV efforts would be led by a single strategy with three primary goals:
1. Reduce HIV incidences
2. Increase access to care
3. Optimize health outcomes and reduce HIV-related health disparities
As outlined in the U.S. HIV vision statement published in July 2010:
“The United States will become a place where new HIV infections are rare and
when they do occur, every person, regardless of age, gender, race/ethnicity, sexual
orientation, gender identity or socio-economic circumstance, will have unfettered access
to high quality, life-extending care, free from stigma and discrimination." (National
HIV/AIDS Strategy for the United States, 2010)
As the U.S. begins to renew the battle against HIV/AIDS in America, having one
cohesive national strategy should help ensure that the country remains focused on the
issue and that programs and policies support the three overarching goals. Since the
discovery of HIV/AIDS, there has been important progress in providing care, support and

6
Dept. of Health & Human Services Fiscal Year 2010, pg. 2 http://www.hhs.gov/about/budget/fy2010/fy2010bib.pdf
6

treatment to people living with HIV/AIDS as well as widespread promotion of
preventative actions that have reduced the number of potential infections. However,
while having a single unifying strategy seems to be a step in the right direction, one
remains hopeful that policy makers will not relax too much in the comfort of having one
strategy that has yielded good results, according to Dr. Kevin Fenton, Director, National
Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, at the CDC. One hopes
that such early proclamations of success will not lessen the policy makers’ appetite for
even greater results.
Recognizing that nuances are needed for effective communication to resonate
with the country’s diverse population of impacted and at-risk groups (African Americans,
gays, Latinos, women), the national strategy appears to have a flexible infrastructure that
allows law makers to customize programs and policies beyond having to use the same
broad application of the strategy to all groups. While a single national strategy offers a
sound foundation and framework for addressing the HIV issue across the board, the
notion that the three goals outlined by ONAP will be sufficient guides to meeting the
needs of the country’s most diverse, hard-to-reach populations is indeed ambitious.

7

Listening to the Voice of the Community
To ensure success, unlike previous administrations, ONAP took a collaborative
approach and solicited community input to create a more effective strategy for combating
HIV/AIDS.

For example, ONAP engaged the public and conducted 14 community discussions
in locations across the nation, including Atlanta, Minneapolis, Albuquerque, Houston,
San Francisco, Los Angeles, Oakland, Florida, New York, among others, speaking with
more than 4,200 people (Community Ideas for HIV, p. 3, 2010). ONAP also encouraged
public feedback and recommendations for the strategy through the White House’s
website. In all, more than 1,000 recommendations were submitted from community
Figure 2. National HIV/AIDS Strategy (Source: ONAP)
8

discussions or received via web-based submissions (Community Ideas for HIV, p. 3,
2010).
Engaging the Community on a Public Information Campaign for HIV

“…a national social marketing campaign that states the facts about condoms and
their ability to prevent HIV is just like the seatbelt campaign that we all saw in the
1980s” – Houston, Texas community discussion (Community Ideas for HIV, p. 3, 2010)

One unprecedented aspect of ONAP’s national strategy is how the Obama
Administration has engaged the HIV community for their input as part of its strategic
recommendations. To that end, the community offered a broad spectrum of suggestions
related to prevention and care, including the need for a national public information
campaign. The need for a culturally-sensitive, multifaceted campaign to raise awareness
about HIV/AIDS remained a recurring theme among community respondents. According
to ONAP’s community findings the following represent some of the major themes the
community suggested for creating an outreach campaign that could inspire change among
high-risk populations, including African Americans, gays, Latinos and Asian Americans.
Diversity
 Services providers and advocates warned about defining populations too
broadly and not recognizing the depth or diversity that exist within
subpopulations
 The need for comprehensive health insurance coverage, culturally competent
providers, and a greater number of HIV care providers in underserved rural
and urban communities
Access
 Access to care and social services for chronic disease management and long-
term well-being
9

 Make health services more accessible, including transportation, housing, and
job training
 Expand access to care to help reduce HIV transmission rates and alleviate
health disparities
Equality
 Address the disparities in health services and structural inequalities that hinder
access, ranging from racial and ethnic disparities to sex and gender, sexual
orientation, age, immigration status, and geographic disparities
 Increase specificity in the Nation’s surveillance data and inequities in the
Nation’s public and private insurance markets
 Address the shortage of health professionals who are qualified to address
HIV/AIDS
 Focus on the need for more streamlined funding processes and greater
collaboration among Federal, State, and local agencies to facilitate more
efficiency
Additionally, based on ONAP’s community focus groups, the community
initiated discussions about social marketing as a way to help decrease new HIV cases.
This represents an extraordinary opportunity for ONAP and the Obama Administration to
develop PR campaigns that integrated the community’s feedback and built upon the
expertise and resources of the Administration’s communication professionals and
agencies. Below are the community’s savvy recommendations for developing effective
tactics and ideas on messaging to help address HIV, including:
 Develop targeted messages for each population versus one single message
10

 Use unique, culturally-appropriate messages and messengers, such as delivering
key messages according to: risk, age, race/ethnicity and gender
Another interesting observation was the community’s call for more science-
based prevention messages rather than ideologically-driven ones, and emphasis on the
importance of having the right messengers to communicate with each group (Community
Ideas for HIV, p.18, 2010). Specific recommendations also included:
 Have peers within each risk group
 Involve key influencers and opinion leaders that groups identify with most,
including parents, teachers, political figures, and faith-based and community
leaders
The community’s suggestion for more science-based messages versus ideological
messages is a potentially valuable insight, if somewhat surprising, considering the many
HIV awareness campaigns over the last 20 years that have framed messages around
ideology. This is an indication that in the past, organizations seeking to raise awareness
about HIV may have miscalculated the impact they assumed ideological messages would
have on HIV prevention and behavior change. This is not to suggest that idea-based
messages are not effective; they often resonate with the communities most impacted. It
seems, however, that at the core of the communication recommendation is the
community’s request for more collaboration in message development. It is unclear that, if
in the past, the purveyors of HIV prevention communications had input from the
community. However, it may be safe to assume that, because the community responded
to ONAP’s call for input by requesting a collaborative approach to message
development, this suggests there may previously have been a disconnect between what
organizations and government agencies believed the HIV community needed in terms of
11

communication, and what those communities actually preferred. A review of sample
HIV/AIDS ads and posters from campaigns conducted between 1987 and 2002 appears to
highlight ideological messages. While these samples may not necessarily represent an
exhaustive collection of communication at the time, the images and language depicted in
Figure 3 seems to indicate that historically, ideological, suggestive, and/or somewhat
superficial messages were the order of the day. However, the community’s cry for
communication today that delivers more inclusive, science-based and/or targeted
messages is a telling indication that changes were needed.

Figure 3. HIV/ADS from 1987 – 1992

Source: The Advocate.com Source: History of Medicine Source: History of Medicine
12

By contrast, an assessment of more current advertisements, such as the one shown
below in Figure 5, suggests that the idea of community collaboration is catching on. For
example, “Testing Makes us Stronger,” an ad launched in 2011 by the CDC as part of its
$2.4-million dollar Act Against AIDS campaign, “was designed by black gay men for
black gay men and strives to communicate the power of knowing your HIV status as a
first step toward staying healthy,” according to a CDC press released distributed on
November 29, 2011.
While this ad’s tag line may be as not science-based as the community
recommended for future communications, it is, however, appropriately targeted, which
likely enhances its effectiveness. According to the CDC, in the case of this ad, the agency
“collaborated with gay and bisexual community leaders, physicians and other experts to
develop the campaign, which strives to raise awareness, improve access and increase the

Figure 4. HIV/AIDS Ads from 1997 - 2002
Source: Gaylife.org Source: History of Medicine
13

number of black gay and bisexual men who are aware of their HIV status, which is the
first step to care, treatment and prevention services.” (CDC press release, Nov. 29, 2011)

Figure 5. Testing Makes Us Stronger 2010 (Source: Act Against AIDS)
14

Chapter 3
A Look at Prior U.S. HIV Strategies

Along with the community’s social marketing suggestions and the overall
feedback for HIV prevention programs and policies, the Obama Administration
developed its strategy with three major goals that incorporate much of the community’s
response. The collaborative approach between the Administration and the HIV
community to solve the HIV issue in America appears to be a more inclusive model that
is a departure from the Bush Administration’s more parochial view of the national and
global HIV/AIDS issue with policies that took a linear approach with no input from the
community or the people most impacted by HIV.
Under former Presidents George W. Bush and Bush Sr., HIV/AIDS programs
continued to fund and advocate for abstinence-only-until-marriage programs that had
begun under Ronald Reagan’s presidency in 1981, despite evidence showing that
abstinence-only policies were ineffective and failed to adequately help HIV patients
7
.
The Clinton Administration, on the other hand, responded to the AIDS epidemic
much differently, initiating a new phase of AIDS awareness at the federal level that
benefited the HIV community and moved away from abstinence-only programs.
To address the epidemic, Clinton appointed a national AIDS Czar to lead federal
efforts. Among other domestic policies, he created the National Task Force on AIDS
Drug Development, whose goal was to examine how medications could be released more
quickly to patients
8
. Clinton’s Administration also addressed discrimination against

7
History of Abstinence Only, 2009
http://www.siecus.org/index.cfm?fuseaction=Page.ViewPage&PageID=1263

8
The Body: http://www.thebody.com/content/art14034.html
15

people with HIV and AIDS, and substantially increased funding for AIDS research and
prevention nationally and globally.
Part of Clinton’s lasting legacy is the creation of the Office of National AIDS
Policy (ONAP), which brought laser focus, greater direction and visibility to AIDS.
According to The Body, an online resource on US HIV policies, in 1998, “President
Clinton declared HIV/AIDS to be a severe and ongoing health crisis in racial and ethnic
minority communities and created a comprehensive new initiative that invested $156
million to improve the nation's effectiveness in preventing and treating HIV/AIDS in the
African-American, Hispanic, and other minority communities”.
9

The Obama Administration added more layers to Clinton’s strategy on HIV. It
was considered by activists a welcomed change in ideology, practice and execution on
how the U.S. could fight the HIV epidemic on a broader front, reaching the most
impacted communities, including African-American women. The Obama
Administration’s strategy is a largely collaborative approach to fighting the epidemic.
The Obama Administration’s HIV Strategy
In July 2010, the Obama Administration identified a broad strategy to reduce
new HIV cases by 25 percent by 2015 with ambitions to: 1) reduce HIV incidences, 2)
increase access to care and, 3) optimize health outcomes and reduce HIV-related health
disparities. Instead of merely outlining a strategy, the Administration also developed a
Federal Implementation Plan that outlined the steps various federal agencies would take
to support the plans outlined in the Strategy (National HIV Strategy, viii, 2010).


9
The Clinton Era: http://clinton2.nara.gov/ONAP/accomp.html

16

Reduce HIV Incidences
“More must be done to ensure that new prevention methods are identified
and that prevention resources are more strategically concentrated in specific
communities at high risk for HIV infection” (National HIV Strategy, viii, 2010).

This statement illustrates that the Obama Administration recognized and
understood the importance of taking a more targeted approach to solving the HIV issue in
America, especially as it related to diverse, under-served populations. The Administration
identified multiple, specific groups as having a “greater risk than others,” including gay
and bisexual men of all races and ethnicities; black men and women; Latinos and Latinas;
people struggling with addiction, including injection drug users, and people in geographic
hot spots, which included Southern and Northeastern regions of the US; Puerto Rico, and
the U.S. Virgin Islands (National HIV Strategy, viii, 2010). The report goes on to state:
By focusing our efforts in communities where HIV is concentrated, we can have
the biggest impact in lowering all communities’ collective risk of acquiring HIV.
(National HIV Strategy, viii, 2010)

While it is a good sign that the Obama Administration, with its willingness to
develop, evaluate, and “implement effective prevention strategies and expanded HIV
services,” was moving further away from a one-size-fits-all approach to HIV prevention,
it remains to be seen how effectively this approach balances and meets the needs of each
respective community without favoring one group over the other. The idea of
interconnectedness, for example, as seen in the statement, “by focusing our efforts in
communities where HIV is concentrated, we can have the biggest impact in lowering all
communities’ collective risk of acquiring HIV,” (National HIV Strategy, viii, 2010),
raises an important question as to whether the government could successfully reach each
individual group.
17

The Obama Administration’s HIV reduction goals also included testing (because
people who know their status are less likely to transmit HIV); education and support to
discourage people from participating in risky sexual behaviors; the use of medications,
biomedical interventions, vaccines and microbicides, and the expansion of evidence-
based mental health and substance abuse prevention and treatment programs (National
HIV Strategy, viii, 2010). It also discussed how it would execute its platform from a
communication standpoint. The mention of using culturally-competent and gender-
specific targeting and messaging to reach these audiences would be considered critical to
effectively influence each target group the Administration had identified, especially
African-American women.
Increase Access to Care
To address the issue of access, ONAP expanded its preventative care approach
and established an easy-to-navigate system that linked people with new HIV infections
with the proper care, increasing the number of HIV health providers to help more diverse
people living with the disease (National HIV Strategy, p. 21, 2010).
Treatment can be expensive, however. For example, on average, HIV therapy
costs approximately $25,000 per year, and medication is only a portion of a patient’s total
health care needs (National HIV Strategy, p. 21, 2010). To help meet total health needs,
the Patient Protection and Affordable Care Act of 2010 included coverage of people
living with HIV. Under the law, by 2014, Medicaid would be expanded to include all
low-income people and the uninsured (National HIV Strategy, p. 21, 2010). Additionally,
the Ryan White Program, the largest federal program designed to financially help people
living with HIV/AIDS supplement the cost of care, would provide more services and
18

resources to the uninsured. These measures should especially benefit low-income
African-American women.
In terms of its implementation for increasing access to patients, one of the major
aspects of the Obama Administration’s plans is a community-based approach working
with faith-based groups, schools, social groups, among others, to: promote collaboration
among health care providers, increase data acquisition within underserved communities
to better track people impacted by the disease, boost HIV testing, and incentivize health
care clinics to provide more services.
Optimize Health Outcomes and Reduce HIV-Related Health Disparities
HIV rates among racial minorities and the gay community are high. These groups
are often marginalized and face risk factors that could limit their access to care services,
sexual education and prevention programs. The Obama Administration’s strategy sought
to grant more access for these groups, keeping in mind that “HIV exists within a health
care system where different groups have varying access to services—and achieve varying
health outcomes
10
.” ONAP proposed using the Affordable Care Act as a complement to
the new strategy to address health injustices.


10
Summary of National HIV Strategy 2010, http://www.projectinform.org/pdf/NHAS_summary.pdf
19

Chapter 4

The Evolution of HIV/AIDS Perceptions – the Gay Cancer

The early 1980s marked the first years of the HIV epidemic. Upon its discovery,
the disease was already becoming widespread among young white, gay men, yet
researchers, caught up in their attempts to learn more about how it was being transmitted
and how to accurately classify it, still had not officially named the disease. Because of its
first association with white gay men, the disease was labeled in a variety of ways,
including “gay compromise syndrome” and “gay-related immune deficiency syndrome
(GRID)”
11
.
In June 1981, a young homosexual man from New York was diagnosed with
Kaposi’s sarcoma, a rare transmittable cancer distinguishable by purple skin tumors that
quickly became associated with HIV. As a result, the terms “gay cancer” and “gay
pneumonia” entered the American lexicon. By July 1982, 452 cases from 23 states had
been reported to the CDC
12
. During that same month, occurrences of the disease were
found in heterosexuals in Haiti, which confounded researchers because, up until that
point, the disease had been found only in gay white men. In September 1982
13
the CDC
named the disease Acquired Immune Deficiency Syndrome (AIDS), and broadened the
category to include sexual transmission among homo- and heterosexuals.
From the 1980s to present day, perceptions about HIV/AIDS still largely framed
it primarily as a gay, white disease. The death of Hollywood icon Rock Hudson in 1985
catapulted AIDS into worldwide headlines, compelling lawmakers and the public to pay

11
Avert.org http://www.avert.org/aids-history-86.htm

12
CDC (1982) 'Kaposi's Sarcoma (KS), Pneumocystis Carinii Pneumonia (PCP), and Other Opportunistic
Infections (01): Cases Reported to CDC as of July 08'

13
Time Magazine:
http://www.time.com/time/specials/packages/article/0,28804,1977881_1977895_1978703,00.html
20

closer attention to the deadly disease.
14
News of the closeted-gay Hudson’s death jolted
the country because for the first time it was forced to come face to face with the fact that
America’s perceived heterosexual dreamboat – was in fact gay. Media reports suggest the
news of Hudson’s death was more sobering not only because the public had to face the
fact that their image of an ultra-masculine sex symbol was a facade, but on a larger level,
it would appear that the public’s perception of what homosexuality and AIDS looked like
was now shattered because of Hudson’s Hollywood persona, which epitomized the
romantic leading man.
To address the issue further, Randy Shilts, an investigative journalist with the San
Francisco Chronicle who covered the AIDS epidemic during the ‘80s, recounted the
country’s struggle to deal with AIDS in his book And the Band Played On (1987), and
later in the 1993 film version
15
. Both the book and the movie detailed the first years of
the epidemic in America, chronicling the nation’s slow response. It also highlighted
Shilts’ view of the factors that he believes led to the country’s dismissal of the disease,
including budget cuts by the Reagan Administration, the public’s disinterest in the
epidemic because of its association with gay men, and the media’s disregard for the issue,
among other factors.
The federal government’s initial sluggish response to AIDS was considered by
some to be a major impediment to prevention in gay and minority communities. As
demonstrated during a 1982 White House press briefing when a journalist asked a
spokesperson for President Reagan “…does the President have any reaction to the

14
NY Times: http://www.nytimes.com/1990/01/08/arts/review-television-the-life-death-and-secrets-of-rock-
hudson.html?pagewanted=all&src=pm

15
NYU School of Medicine: http://litmed.med.nyu.edu/Annotation?action=view&annid=10032
21

announcement – the Center for Disease Control in Atlanta, that AIDS is now an epidemic
with over 600 cases” The spokesperson responded - “What’s AIDS?”
16

From an HIV policy standpoint, the Reagan Administration refused to advocate
condom use and banned HIV positive immigrants from entering the country. His
Administration later advocated for abstinence-only policies
17
, which marked the
beginning of the country’s national policy that would trickle down through subsequent
Administrations, including those of both President Bushes.
Under Reagan, the first national communication effort to raise awareness about
HIV/AIDS began in 1988 when then-Surgeon General C. Everett Koop, M.D., ScD,
published the Understanding AIDS report. One hundred-seven million brochures were
mailed to every household across the country. By then, nearly 83,000 cases of AIDS had
been reported and more than 45,000 people had died.


16
Avert: History of HIV/AIDS: http://www.avert.org/aids-history-america.htm#ref19

17
Avert: History of HIV/AIDS: http://www.avert.org/aids-history-america.htm#ref19
Figure 6. Understanding AIDS was part of the first national
communication materials used to raise awareness about
HIV/AIDS 1988 when then-Surgeon General C. Everett Koop.
(Source: Avert.org)
22

However, since the ‘90s, the gay community has garnered more attention toward
HIV/AIDS by mobilizing through local and national grassroots efforts, and has
capitalized on celebrity-star power from Hollywood heavyweights, notably Elizabeth
Taylor among others, to raise awareness about the disease within their community. Gays
have also relied on the entertainment industry to raise awareness about HIV within
mainstream American and the gay community. Early films like Philadelphia, starring
Tom Hanks and Denzel Washington, which at the time, was the first big-budget
Hollywood film to address AIDS
18
, were instrumental in raising the volume on the
epidemic. In terms of specific steps the gay community took to combat the issue of HIV,
nonprofit groups like ACT UP organized and marched on Wall Street, demanding access
to AIDS treatment, public education and the establishment of a national policy on AIDS.
Additionally, gay activists across the country established organizations like The Kaposi’s
Sarcoma Research and Education Foundation (San Francisco) and Gay Men’s Health
Crisis (New York)
19
to provide a support base and to increase awareness.
By the late ‘80s, more awareness was building around HIV/AIDS. In 1986,
Meryl Streep and Robert De Niro appeared in the “Rumors are Spreading Faster than
AIDS” public service announcement (PSA) to address the negative public perceptions
about HIV/AIDS. In 1987, the CDC launched the country’s first federal education
program to address AIDS. The “America Responds to AIDS” campaign aimed to dispel
myths about the disease. Nearly into the ‘90s, the federal AIDS campaign targeted high-
risk groups with a PSA geared toward minorities, young adults and injection drug users
(Kaiser Foundation).

18
Rotten Tomatoes: http://www.rottentomatoes.com/m/philadelphia/

19
Avert: History of HIV/AIDS: http://www.avert.org/aids-history-america.htm#ref19
23

The work to raise awareness about HIV/AIDS avoidance within the white gay
community continues. In the early years, as the nation and the world turned their attention
toward understanding the AIDS epidemic, emphasis was on primarily the gay white
community’s plight, while various minority groups, especially African Americans, were
being disproportionately impacted by the disease and given little attention by the
government, media or NGOs. Today, the HIV/AIDS epidemic has become predominantly
a black issue – and the impact on African American women, in particular, has been
devastating.

24

Chapter 5
HIV/AIDS is the New Black

Did you know that the rate of AIDS in the Black and Hispanic community
is rising at an alarming rate? – A Tribe Called Quest (Midnight Marauders,
1993)

In 1993, when fans rushed home to hear the band A Tribe Called Quest’s third
album Midnight Marauder, few probably expected the introduction to be a public service
announcement for HIV/AIDS in the black and Hispanic communities – but it was.
Masterfully woven into its production, right before the album’s first song, the message
greeted listeners voiced by a soothing, computerized female voice posing the question to
unsuspecting hip-hoppers: “Did you know that the rate of AIDS in the black and Hispanic
community is rising at an alarming rate?” It was a creative way to raise awareness about
the issue among a key demographic, and came from one of the most respected groups in
urban music at the time. Indeed, the message was timely as the perception of HIV/AIDS
was shifting. The face of HIV/AIDS transitioned from being exclusively that of gay white
males in the 1980s to African Americans in the new Millennium.
African Americans may have most publically collided with HIV on November 7,
1991, when LA Lakers superstar Magic Johnson announced to the world that he was HIV
positive. On that day, Johnson effectively brought worldwide awareness to the fact that
the AIDS epidemic had no color barrier or partiality for sexual preference. Johnson
probably did not know that his announcement would foreshadow HIVs evolution from
being solely a gay, white male disease to becoming a heterosexual disease largely
affecting black women.
While African Americans were battling the disease before Johnson’s
announcement, he individually may have personally done more to change the national
25

conversation and raise volume on the issue, much as the death of Rock Hudson had done
for the gay community and the general population. In fact, blacks were engaged in the
fight against HIV/AIDS upon its first discovery in the ‘80s. According to Phil Wilson,
CEO/Founder of the Black AIDS Institute, who has lived with HIV since the 1980’s, the
early days of HIV within the black community were devastating:
I knew people who died very early. It was clear to me that we had to get involved
in fighting this disease and the government was not responding. The incident that
catapulted me to do this fulltime was Lyndon LaRouche put an initiative on the
California ballot, I believe in 1985. That initiative would have quarantined people
who were HIV positive. It was at that point that I decided that this should be a
full-time endeavor… what we discovered as a result of building a strategy to
fight the AIDS quarantine initiative is we discovered for the first time that black
people where disproportionately impacted by HIV. Up until that point, the public
commentary about HIV was that it was a white gay disease. The truth of the
matter is it was never just a white gay disease

According to the CDC’s 2011 data, although blacks only represent 14 percent of
the U.S. population overall, they accounted for 44 percent of new HIV infections in
2009
20
. Moreover, the CDC reports that the HIV infection rate among African Americans
is disproportionately higher than that of any other ethnic group.
Nationally, as a group:
 More than 500,000 African Americans are living with HIV
21

 HIV was almost eight times higher in African Americans than in whites in 2009
 Among African American women, HIV infections were 15 times higher than in
white women
 HIV/AIDS is the leading cause of death among black women ages 25-34
In Los Angeles County
 African Americans account for 22 percent of HIV/AIDS cases

20
HIV Among African Americans, http://www.cdc.gov/hiv/topics/aa/PDF/aa.pdf

21
Left Behind: Black America – a neglected priority in the global AIDS epidemic, Black AIDS Institute 2008
26

 African Americans represent 32 percent of residents living in Census area SPA 6
(South Los Angeles), but account for 54 percent of people living with
HIV/AIDS
22

 Black women comprise 25 percent of people with HIV/AIDS
Since HIV’s discovery in the early ‘80s, the disease’s effects have rippled
through all of the communities it has affected, but most especially among minorities.
The CDC officially responded to the epidemic with a government-sponsored
HIV/AIDS-related campaign in 1987, when it launched its America Responds to
AIDS campaign as the nation’s first federal HIV education program
23
. The campaign
took a broad approach to the issue and relied on media relations, partnerships and
direct-to consumer outreach
24
to raise awareness.


22
County of LA HIV/AIDS Comprehensive Care Plan, http://hivcommission-la.info/cms1_147942.pdf

23
Evolution of an Epidemic: 25 Years of HIV/AIDS Media Campaigns
http://www.kff.org/entpartnerships/upload/7515.pdf

24
Evolution of an Epidemic: 25 Years of HIV/AIDS Media Campaigns
http://www.kff.org/entpartnerships/upload/7515.pdf
Figure 7. Persons Living with AIDS by City/Area for SPA 6 – South Los Angeles (LA County)
27

In 1989, America Responds to AIDS began focusing its advertising on higher risk
communities, including African Americans. For example, the campaign’s “Five People”
featured five African Americans discussing HIV/AIDS in their community
25
.

In recent years, several HIV/AIDS campaigns have been developed that target
African Americans as a community, including the CDC’s Act Against AIDS program

25
Evolution of an Epidemic: 25 Years of HIV/AIDS Media Campaigns
http://www.kff.org/entpartnerships/upload/7515.pdf
Figure 8. “Don’t Just Worry about HIV. Do Something About it” (1989). The ad
targeted African Americans and also included variations that targeted Latinos,
intravenous drug users and gays – all considered high risk groups (Source:
History of Medicine)
28

launched in 2009. The campaign’s focus has also focused broadly on black women. The
$45-million Act Against AIDS program is being phased in over five years, 2009-14, and
includes involvement from community groups, media, and public-health workers. The
current phase (2011) of the initiative is targeting gay African-American men and black
women. Campaign messages have been designed and disseminated through the
program’s media partners and social media platforms (Twitter, Facebook, YouTube) to
encourage HIV testing among gay/bisexual men, and women to decrease the rate of new
infections
26
using social media messages such as, “I know” (knowing one’s HIV status).”
The program also has used black celebrity spokesmen such as Ludacris and Jamie Foxx
in web videos.
In terms of campaign results, according to the Act Against AIDS Year-End Report,
the campaign garnered
27
:
 430 million media impressions
 183,816 website views
 183,854 people attending community and provider events
 Other highlights, including partnerships with the Global Business Coalition on
HIV/AIDs, Tuberculosis, and Malaria; and the Black MSM Work Group,
among others.
Despite the campaign’s impressive media results, one must wonder: is calculating
media results the most effective way to measure campaign success and inspire behavior
change for such a difficult and complex issue as HIV?

26
CDC Press Release: http://www.cdc.gov/nchhstp/newsroom/AAAPressRelease.html

27
AAA Year-End Report: http://www.cdc.gov/hiv/aaa/pdf/AAAYearEndReport.pdf
29

Dr. Kevin Fenton, the CDC’s Director of the National Center for HIV/AIDS,
Viral Hepatitis, STD, and TB Prevention, provides his insight on how the agency
measures the Act Against AIDS campaign success against its objectives:
We have a number of metrics that we use. We look at media impressions that the
campaign generates over time, we look at the number of partners that are using
our materials and disseminating those materials, which gives us a sense of how
intense our campaign is going. We engage with our health department partners
who co-brand and essentially run themselves. We look at indicators of
populations that have been treated from awareness. We work with marketing
firms, and social marketing and social serving firms in jurisdictions where we are
targeting to see if the population has brand awareness…We may do surveys in the
jurisdiction to look at the penetration of ads. The most common metrics that we
use is media impressions that are generated by the campaign, which is a
combination of what is happening in print and in other media. The campaigns are
designed to inspire some behavior change or awareness increase, so again, we use
surveys to check knowledge and awareness or we can look at behavior change as
evidenced by an increase access to services and an increased uptick in
testing…with evaluation for any campaign, we use a very complex evaluation
metrics, which has a number of indicators that we use. So to answer the question
whether media impressions are an effective evaluation tool, I would say that it is
one of many tools that we use to evaluate a campaign and we never rely on just
one indicator because we realize that the effectiveness of a social marketing
campaign is very complex.

The U.S. government has invested more than $100 billion in combating
HIV/AIDS since 1981
28
. While billions have been spent on HIV programs, with
significant funds designated for awareness campaigns, the continued rise in infection
rates among African Americans, especially women, makes it abundantly clear that media
outreach – at least in its current form – is not working as an effective method to inspire
behavior change among African Americans in light of their HIV risk.
There is no one method that will solve the HIV epidemic among blacks, so a
concerted effort on multiple platforms will be required. That said, perhaps a better means
for effectively raising awareness among African-American women that will truly inspire

28
Trends in U.S. Spending on HIV/AIDS, Kaiser Family Foundation: http://www.kff.org/hivaids/6044-
index.cfm
30

behavior change will come in the form of partnerships and programs that the CDC has
forged like its Act Against AIDS Leadership Initiative. Already, the initiative has
partnered with 14 of the nation’s leading African-American civic organizations to
integrate HIV prevention into each organization’s outreach programs
29
, including 100
Black Men of America, American Urban Radio Networks, Coalition of Black Trade
Unionists, Congressional Black Caucus Foundation, National Action Network, National
Association for the Advancement of Colored People, National Coalition of 100 Black
Women, National Council of Negro Women, National Medical Association, National
Newspaper Publishers Association, National Organization of Black County Officials,
National Urban League, Phi Beta Sigma, and Southern Christian Leadership
Conference
30
.
Many of the organizations that the CDC is partnering with are legacy groups
within the black community. These groups remain active in providing resources and
services to assist African Americans with overcoming many of the social, economic and
racial issues that they face that increase their vulnerability to HIV infection. This is not to
suggest that media outreach shouldn’t be used, just that perhaps it should be a secondary
aspect since behavior change requires more engagement than just media.



29
New National HIV Campaign Launched:
http://www.hivplusmag.com/NewsStory.asp?id=20262&sd=04/08/2009
30
New National HIV Campaign Launched:
http://www.hivplusmag.com/NewsStory.asp?id=20262&sd=04/08/2009
31

Chapter 6

A Female Epidemic – Factors Contributing to HIV among Black Women

African American women with HIV “constitute one of the least powerful and
most burdened segments of society
31
,” and they account for 64 percent of new AIDS
diagnoses among women. AIDS remains the leading cause of death among black women
ages 25-34
32
. In the 33 states with mature HIV reporting systems, black women
represented 65 percent of new HIV/AIDS diagnoses among women in 2006
33
. According
to Los Angeles County data, black women make up 25 percent of people with
HIV/AIDS.
It is clear that black women are particularly at high risk for HIV infections. A
careful examination of psychological, societal, economical and behavioral factors that
affect the actions of black women is needed to determine what may be contributing to
their risk profile.
Many black women with HIV are low-income and are likely to be single mothers
(Owens, Vol. 48, 2003). This complicates the risk for HIV even further. The
overwhelming risk factor contributing to HIV in black women is unprotected sex with
men
34
. Other risk factors include poverty; low education; having sex with black men who
have sex with other men (MSM), and intravenous drug use. However, these factors alone
may be insufficient in determining which single risk factor should be the primary focus to

31
Quinn, S. C. (1993). AIDS and the African American woman: The triple burden of race, class, and gender
http://heb.sagepub.com/content/20/3/305.abstract

32
Left Behind: Black America, Black AIDS Institute, http://www.blackaids.org/docs/7_08_left_behind.pdf

33
CDC, HIV/AIDS Surveillance Report, 2006
http://www.cdc.gov/hiv/topics/surveillance/resources/reports/2006report/pdf/2006SurveillanceReport.pdf

34
Left Behind: Black America, Black AIDS Institute, http://www.blackaids.org/docs/7_08_left_behind.pdf
32

emphasize in communications intended to reduce risky behaviors and ultimately the HIV
infection rate among African-American women.
According to Sandra D. Quinn’s report, AIDS and the African American Woman:
The Triple Burden of Race, Class, and Gender (Quinn 1993), careful consideration of the
links between poverty, gender and class are necessary in order to fully understand the
magnitude of the HIV epidemic among black women. Given the complexity and cultural
history of the African Americans, these factors must be examined within the context of
their inextricable linkages. The relationship between HIV risk and sexual decision-
making among black women is a complex social problem, especially for lower-income
women
35
.
Perception of risk for HIV infection has been shown to be a motivator for risk
reduction behaviors, but according the Quinn’s article, African American women do not
see themselves as at risk for HIV infection. She explains that aside from their possible
misconceptions about HIV/AIDS, their views may also be influenced by the failure of
AIDS prevention programs to reach black women with relevant, culturally-sensitive
messages. In this case, Quinn cites Susan D. Cochran’s research in Psychosocial HIV
Interventions in the Second Decade, A Note on Social Support and Social Networks
(1991), which notes that, for African American women, the perception of risk is
necessary to change sexual behavior, but that perception of risk will not be accurate if:
1. Women are unaware of the relation between behavior and level of risk
2. Women are aware but devalue the risk to their group (i.e., African American
women who see AIDS as a “white disease”)

35
Quinn, S. C. (1993). AIDS and the African American woman: The triple burden of race, class, and gender
http://heb.sagepub.com/content/20/3/305.abstract
33

3. Women are aware of risk to their group but minimize the extent of their
personal risk
The most salient discussion found in Quinn’s presentation is her reference to
Stephanie Kane’s article, AIDS, Addiction and Condom Use: Sources of Sexual Risk for
Heterosexual Women published in The Journal of Sex Research. Kane argues “the threat
of AIDS is often not the most immediate and pressing threat in the lives of poor African
American women…The key to poor ethnic women’s response to AIDS is their perception
of its danger relative to the hierarchy of other risks present in their lives and the existence
of resources available to act differently...even if AIDS is perceived as a relevant danger,
women may not readily have the means to reduce the risk” (Kane 1990).
Considering the factors Quinn outlined as contributing to black women’s risk for
HIV/AIDS, Phil Wilson, CEO/Founder of the Black AIDS Institute adds more insight on
the matter during a personal interview with this researcher on January 9, 2012:
Black women are at risk [for HIV] because black people are at risk, and black
people are at risk for a number of reasons: As a community, we were slow to
respond to the AIDS epidemic, and we are dealing with the legacy of that slow
response as a result, the epidemic had a chance to get ahead of us. The virus had a
chance to get ahead of us, so we are chasing the virus for 20+ years.

Wilson also gives his insight into why he believes African-Americans (men and
women) have been slow to respond to the HIV/AIDS epidemic with his contention that:
I think in the beginning, we [the black community] received information that
suggested that (HIV/AIDS) was not our problem. The public message was that
AIDS was about white, gay men. And that did two things: it was not our problem
and we had a lot of other things that were impacting us that we had a full plate,
even without HIV – there’s poverty in black communities, there’s unemployment
in black communities. We are disproportionately impacted by other diseases as
well. There’s violence...there’s teen pregnancy… so we had a full plate.

I think…because the disease was mischaracterized in the beginning, that created
an environment where stigma rules the day and so not only was it not our
problem, but we didn’t want to be associated with the problem, and often we were
34

more concerned… I think this continues to be the case today. We were more
concerned about the stigma than we were about the disease.

Both Wilson and author Quinn make good points about the racial, social and
financial burdens that inextricably make black women more susceptible to the risk of
HIV/AIDS infection. The notion that many black women are essentially so burdened with
extraordinary emotional, social, economic problems that they are oblivious or indifferent
to dealing with yet another issue like HIV further complicates the potential ways that
communications could be used to effectively address the issue.
To further illustrate how these factors affect black women, consider the case of
Los Angeles resident LaWanda Grisham, 58, a local HIV/AIDS counselor at John
Wesley Clinic for Health who has AIDS. Grisham was once a homeless drug addict who
was diagnosed with AIDS in 1996. She was infected by a man she describes as her
common-law husband, a former intravenous drug user who died of AIDS. During an
interview with the researcher on January 13, 2012, Grisham admitted that prior to her
husband’s death, “…I knew nothing about AIDS.” LaWanda Grisham also recounts that
because of the death of her cousin, who was gay and died of AIDS, she remained
unaware of her own risk to the disease related to her husband’s past drug use: “I didn’t
know. I thought it [HIV/AIDS] was a gay disease
36
…” she said.
Because perception of risk for HIV infection has been shown to be a motivator for
reducing risky behaviors, raising the level of awareness among black women about their
risk of contracting an HIV/AIDS infection would be the first logical step toward ensuring
they recognize their higher vulnerability to the disease.


36
Grisham, LaWanda. AIDS counselor. Personal interview. 13 January 2012.
35

This Above All, to Thine Own Self Be True
Centuries ago, when Polonius said “…This above all, to thine own self be true…”
to his son Laertes in Shakespeare’s famous play Hamlet, he essentially advised him to
remain true to himself to avoid danger and life’s mishaps. But having the courage to love
and accept oneself above all, isn’t always easy. When considering whether black women
typically prioritize their own needs about others, the research suggests that self-esteem
issues may be prohibiting them from doing so – and leading to riskier sexual behaviors.
One doesn’t have to be a scholar to understand that people with higher self-
esteem have a tendency to feel better about themselves, value their own worth and are
more likely to accomplish some success throughout their lives. The idea that a person’s
behavior as well their ability to change the outcome their life is rooted on how they feel
about themselves may seem to be a simple concept.
However, the complexity of self-esteem is profoundly deeper than one might
imagine, especially as it relates to women. “Girls lose their self-esteem on the way to
adolescence,” according to a 1991 study cited by Susan Nolen-Hoeksema, professor of
psychology at Yale University and the author of The Power of Women, which was
published by the American Association of University Women in 2012. While other
reports may suggest that these findings are not universal, the thesis researcher’s empirical
view of Nolen-Hoeksema’s analysis suggests that it is plausible that girls who suffer from
perceptions of lower self-worth may retain residual feelings of low self-esteem as they
develop into women, potentially affecting their life choices and behaviors into adulthood.
In fact, authors Ralf Schwarzer, Aleksandra Luszczynska, and Amelie U.
Wiedemann suggest in Perceived Self-Efficacy in Health Behaviour Change (1995) that
36

people with a “strong sense of personal efficacy” tend to have better health, higher
achievement, and more social integration.”
Conversely, low self-esteem negatively affects behavior. As it relates to women
and HIV, women displaying higher risk behaviors, including black women, were shown
to have lower self-esteem, according to a study published in Women’s Health titled, Self-
Esteem and At Risk Women: Determinants and Relevance to Sexual and HIV-Related
Risk Behaviors (2005). The findings revealed five specific factors that indicated low self-
esteem, including: race; religion; money problems; emotional abuse, and drug issues.
These factors could be relevant to encouraging low-income women’s risky behaviors and
subsequently increasing the likelihood that they acquire HIV. These factors were
considered “predictive of women’s self-esteem levels,” which are also parallel the Triple
Burden arguments on race, economics and gender as driving factors for HIV infection
among black women discussed earlier by Sandra Quinn and Phil Wilson.
The Triple Burden factors likely contribute to some of the key reasons black
women are at higher risk of contracting HIV. AIDS patient and counselor LaWanda
Grisham sheds additional light on the significance of low self-esteem among
impoverished African-American women. She sees it as a common denominator for
increased HIV infections
37
:
Lack of self-esteem; the hope is gone. There’s no light in their eyes anymore. It’s
a hollow laughter…the situations in their lives have just piled up. We as women,
we carry a lot of baggage already, and then, if you’re going through abuse or
you’re going through a problem with your kids, or you have a drug addiction and
then we get this extra bag called HIV.

Grisham reports that, as a result of counseling, she thankfully believes she has
overcome her own low self-esteem issues and that therapy is a critical part to helping

37
Grisham, LaWanda. AIDS counselor. Personal interview. 13 January 2012.
37

black women avoid toxic behaviors that increase their risk for HIV. As an outspoken
AIDS activist, Grisham works as a counselor in the HIV department at John Wesley
Clinic for Health located in Downtown Los Angeles’ Skid Row. She is also part the Lady
of Diversity Program, which targets women of color with HIV who are at high-risk for
discontinuing their HIV medical care. After spending years as a volunteer at local HIV
treatment and counseling centers helping low-income and homeless women, Grisham
says she believes her work with the Diversity Program has put her on a spiritual mission
to help raise awareness about HIV prevention
38
.
In searching for more possible answers and insight into why low-self-esteem may
be contributing to the rise of HIV among African-American women, a look at the
circumstances surrounding how Marvelyn Brown, a young, adventurous African-
American woman who contracted HIV when she was 19 from a man she was dating long-
term, paints a profound view into self-esteem issues.
In her book, The Naked Truth: Young, Beautiful and (HIV) Positive (2008),
Brown chronicles her journey of a tumultuous youth, characterized by her deep
resentment for her mother for being what she calls “the two S’s” -- strict and serious --
leaving her drug-addicted father, up through the day Brown learns she herself has HIV.
The most powerful aspect of Brown’s recollection of her stormy years growing up is that
her antipathy toward her mother begins to shape her self-esteem and view on life. Her
pain and frustration of “being ordered around” by her mother and never meeting her
extraordinarily high expectations, cause Brown to aim low in life, making bad decisions,
contemplating suicide, and even attempting to hurt her own mother:

38
Grisham, LaWanda. AIDS counselor. Personal interview. 13 January 2012.
38

I filled her cup with Sprite – then added a splash of bleach. It wasn’t a conscious
choice. It was that starving part of me that was in charge, a part that needed to
take back some kind of power. (Ch. 1, pg. 14)

The following passage outlines how poor self-esteem plays into Brown’s decision
to engage into risky sexual behavior through the dialogue between Brown and her guy on
the day she unknowingly contracts the virus from him. It further illustrates her thought
process, how she negotiates with herself on possible outcomes and her ultimate decision
to sleep with the guy she called “Prince Charming” unprotected:
Marvelyn, I don’t have a condom. Why would he be so clear? And then I realized
- he must really love me. Why else would he announce it like that? This is what
grown-ups do, not like them high school boys. This is big, I thought to myself.

I’m not going to pressure you or make you do anything you don’t want to do, ‘he
went on. ‘If you want to have sex, you’ll take off your clothes. If you don’t, then
you’ll keep them on. That’s how I’ll know.

My mind was racing. He knows I’m not on birth control. Does he see himself
being with me forever? The worst that could happen is a baby. He must think I’m
a good-enough women to mother his child. This is coming from a guy with two
jobs, a house, and a car. It suddenly felt like a stamp of approval. And God knows
approval is something I’d been looking for all of my damn life.

I sexily undressed, letting my clothes – and inhibitions – drop to the floor. (Ch. 6,
pg. 71)

Brown’s story sheds light on the potential correlation between African-American
women’s low self-esteem, decision-making and HIV acquisition. It turns out that she had
been a regular condom user with her “Prince Charming,” but she engaged in unprotected
sex with him on this occasion, hoping to win his approval.
In this regard, the implication of self-worth is a promising area worth further
examination around HIV prevention policies and messaging. Considering the unique
cultural and gender dynamics of the black community, a 2004 report in the Journal of
Black Psychology reveals that black women lean on each other to lift their self-image.
39

“African-American women’s primary sources of self-esteem are family, friends, church,
and community, all of which are composed mostly of other blacks.” The same report
continues, “other black women are the primary source of black women’s self-esteem
because it is their evaluations that are most important for their own self-assessments.
The report cites the work of Dr. Toinette M. Eugene, an associate professor of
Christian Social Ethics at Garrett-Evangelical Theological Seminary in her analysis of the
power and potential of black women as HIV change agents in her article published in
Women & Therapy (1995) There is a Balm in Gilead: Black Women And The Black
Church as Agents of a Therapeutic Community. Eugene contends “other black women
validate the experience, perspective, and feelings of African-American women that
mainstream society attempts to invalidate. Positive reinforcement by others like
themselves enables these women to not internalize societal views (Eugene 1995; Shorter-
Gooden & Washington 1996). “The strength of their support networks provides a
protective function for their self-esteem and buffers the negative effects of societal
stressors, such as race discrimination, that might otherwise result in demoralization and
low self-esteem.” (Gibbs & Fuery 1994; Lykes, 1983; Miller, 1992; Myers, 1975, 1980).
Indeed, one of the greatest resources to increase self-efficacy, reduce low self-
worth and hopefully empower black women to protect themselves is – other black
women. As a group, African-American women have historically been the central figure
within their families and communities to nurture, provide guidance and act as role models
and mentors.
In terms of black women serving as a resource to the fight against HIV/AIDS, in
an interview conducted for this research, Stephen Simon, AIDS Coordinator for the City
of Los Angeles’ Office of AIDS, expressed a shared belief that an effective strategy for
40

combating HIV among black women should come from black women using peer-based
pressure and support (emphasis author’s):
Black women talking to black women I think would make all of the difference in
the world. If I had one choice on putting money into one type of intervention, it
would be predominately care-based work where women are funded and given
tools that share a much broader number
39
.

Simon offered additional insight into what he believes is needed for black women
to see changes within the community against HIV/AIDS:
I think there needs to be black women-centered social movements to make them
[black women] change. I am getting tired of people like me or researchers across
the board telling women that ‘we are going to empower you’ because it presumes
that men have the empower women. I just don’t think it’s about general education
anymore, it’s the kind of peer pressure internally we need in our communities to
say: look – if we are going to keep ourselves healthy we have to have group
support each other…say to your friends “You need to wear a condom with this
guy” talk about it openly… All that said, I don’t think there is some institutional
work that needs to be done, but there needs to be support made available. Maybe
it’s funding to facilitate women coming together to literally just talk to other
women around “this is what we need to do…” without being judgmental, without
pointing fingers and make that change. I know it sounds nebulous, but for all of
the billions of dollars that have gone into HIV prevention, we don’t see people
using condoms a whole lot more than they used to.


39
Simon, Stephen. AIDS Coordinator, City of Los Angeles Office of AIDS. Personal interview. 12 January
2012
41

The Fear Factor
Fear may be a driving factor inhibiting black women from prevention.
Interestingly, survey results from the author’s primary research, suggests that their
perceived fear is not entirely rooted in their anxiety over contracting HIV/AIDS or other
STDs, but in the fear of being rejected by their partner. Fifty-one percent of survey
respondents cited “Being rejected by their partner” as one of the top reasons some black
women do not ask their partner to wear a condom during sexual intercourse, fearing their
disapproval. Fear of rejection is likely contributing to black women’s willingness to
jeopardize their sexual health, leaving them vulnerable and more susceptible to higher
risk for HIV acquisition.
HIV/AIDS counselor living with AIDS LaWanda Grisham adds:
From the women I’ve run into, including myself, a percentage of them, it’s the
fear of not having a man. The fear of asking too many questions and he may
leave
40
…

Primary research findings from 1:1 interviews conducted with key stakeholders
and subject matter experts for this thesis suggest that black women’s fear of being
without a partner is a recurring theme that demands more exploration.
To gain more insight into black women’s perceptions about potential at-risk
behaviors, the author developed an online survey involving 90 adult black women, which
included several questions that further explored the issue of fear. More than 50 percent
of survey respondents who answered the question: “What do black women fear?” as it
related to condom use, cited “Being rejected by their partner” as the leading reason black
women were not asking their partner to use a condom during sex. Thirty-nine percent
cited “Offending their partner: by using a condom, their partner might think they are

40
Grisham, LaWanda. AIDS counselor. Personal interview. 13 January 2012.
42

being accused of ‘having something’” as a reason to disregard condom use.”
Interestingly, 33 percent of the respondents surveyed said “Angering their partner: by
using a condom, their partner might think they are not trusted” was also a common
perception of black women to forgo engaging in safer sex practices.
Although the primary audience for this report focuses on lower-income women,
the 90 survey respondents were more likely categorized as moderate to high income-
earners, with 28 percent self-reporting annual household income at the $30,000-$59,000
level; 31 percent as $60,000-$89,000; and 24 percent at $90,000+ annual household
income. Despite respondents’ relative wealth, the author believes they still had similar
perceptions of the fears black women face when it comes to condom use.
There appears to be a shared perception of fear that plays into what African-
American women believe is the potential breaking point; that by requesting their partner
to wear a condom, they risk being rejected; offending or angering him. In this case,
regardless of differences in income and education levels, the common thread of fear is
centered on being without a man, or at least, as LaWanda Grisham suggested, “Turning
him away.” Thus, the risk for HIV acquisition is likely increased because it appears black
women are less willing to jeopardize opportunities to have a partner at the expense of
protecting themselves from the risk of sexually transmitted diseases, including HIV.
Stephen Simon, AIDS Coordinator for the City of Los Angeles, provides his
insight on the issue:
Psychologists will tell you that because of the disproportionate number of women
to men in the black community – eligible male partners and socio-economic
disadvantage – that they essentially argue that black women are more – and I
don’t use this word to be intentionally inflammatory – black women are more
desperate to find a man and therefore will not do anything to push him away when
43

you could just say ‘Hey, wear a condom’. I have heard that anecdotally from
individuals
41

Another side of the fear factor emerges when we consider that black women,
especially those who are lower-income, likely have less negotiating power for condom
use when dealing with partners who they perceive as having the potential for causing
them physical or sexual harm. In a study of poor teenage African-American girls, more
than half indicated “they experienced unwanted, unprotected vaginal sex and 25 percent
cited their inability to discuss condom use with their partner” (Unwanted, Unplanned Sex
2011). Considering the economic conditions and gender power roles, it seems at least
plausible to apply the same insights presented from the primary research findings to
lower-income black women. The survey conducted for this study pointed to several likely
common themes seen among black adult women related to fear, including “condom
coercion, condom sabotage and self-silence around condom use in the context of abuse”
(Unwanted, Unplanned Sex 2011). The role of fear as a disincentive for healthier
behaviors may magnify an already complex social problem that needs more exploration.
Anecdotally, black women whisper about their fear of becoming infected with
HIV from a man “on the Down Low,” or Men who Sleep with Men (MSM). According to
the Young Men’s Survey (CDC 2001), 30 percent of MSM self-identified as either
heterosexual or bisexual and reported high rates of unprotected sex.
Down Low or “DL” is a term popularized by then-closed gay author J.L King to
describe heterosexual black men who secretly sleeps with men. In 2004, King was
featured in an exposé on Oprah the same year his book On the Down Low: A Journey
Into the Lives of "Straight" Black Men Who Sleep With Men (2004) was published. The

41
Grisham, LaWanda. AIDS counselor. Personal interview. 13 Jan 2012.
44

book and the Oprah show brought the issue of black men having unprotected sex with
men to the forefront and a growing fear that these men were the main factor contributing
to the rise HIV among black women. DL men do not identify themselves as gay despite
their homosexual behavior and who secretly engage in same-sex intercourse while they
are married to women or in committed relationships with women. According to a 2009
National Public Radio report interview featuring Dr. Kevin Fenton, Director of the
National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention, “About 80
percent of women acquire the infection [HIV] through sexual transmission from male
partners who are HIV infected.”
Because African-American MSM are significantly more likely than other MSM to
self-identify as heterosexual or bisexual (CDC 2003b; Wohl et al. 2002), African-
American women are at considerable risk of acquiring HIV through sexual contact with
MSM. Black MSM who do not disclose their sexual behavior presents additional risks to
black women, including higher rates of STDs and promiscuity (CDC, 2002b/2003b).
However, Simon argues
42
:
What I don’t think is a much of a primary cause is this obsession with the Down
Low situation. I don’t think those men who are gay and hiding that they are gay is
any more prevalent in the black community than it is in other racial community.
There’s no data to support that. We talk a lot about it in the black community, but
it’s happening across the board, race wise…It exists [Down Low men], and we
certainly need to talk about it. There’s an indirect issue of homophobia that exists
across races, it’s a little stronger in black and Latino communities…but it is
pertaining to men who sleep with men secretly and want to stay under the
protection of their church and family structures and don’t want to disclose. There
is certainly a risk, but the notion that it is so much worse in the black community
than anywhere else is, again, is where I refute.

42
Simon, Stephen. AIDS Coordinator, City of Los Angeles Office of AIDS. Personal interview. 12 January
2012
45

Phil Wilson, CEO/Founder of the Black AIDS Institute, is also not convinced that
black MSM outweighs any other factors more heavily contributing to black women and
HIV:
But the issue, quite frankly, for black women, is less about what their partners are
doing and more about what they are doing to protect themselves. There is no
indication that there is or has [been] or increased coercive sexual contact in black
communities than there are in other communities, so women are knowingly
engaging in risky sexual behaviors with their male partners either not knowing
their HIV status or not knowing their sexual history, and so the answer to
reducing the risk for black women is for us to do a much, much better job in
helping them [black women] know their partners’ HIV status, know their partners
sexual history and protecting themselves regardless of the information they are
getting from their partners
43
.

Interestingly, respondents to this project’s online survey cited “not wearing a
condom during sex” as one of the top reasons respondents perceived as the greatest
factors contributing to why blacks are contracting HIV/AIDS. However, the presence of
“Down-Low men” as a risk factor was ranked significantly lower in the same survey.

43
Wilson, Phil. CEO/Founder, Black AIDS Institute. Personal interview. 9 January 2012
46

Chapter 7
The Illusion of Invulnerability: Are Black Women in Denial About Their HIV Risk?
“The illusion of invulnerability” is a social psychological term that is defined as:
An excessive optimism that blinds people to warnings of danger
44
. More simply put,
“People believe that ‘Bad things will not happen to me…’” (Global Journal of Science
Health 2010) and they have a “…tendency to think their risk is less than that of their
peers” (Global Journal of Science Health 2010). Perhaps African-American women
struggle with illusions of invulnerability as it relates to their perceived denial about HIV,
which appears to be a common belief according to anecdotal accounts and research
findings.
To put this concept in context relating to black women, Charles McWells, the
HIV Prevention Services Manager for Los Angeles Centers for Alcohol and Drug Abuse
and the director of the HIV Ministry for Grace Methodist United Church contends
45
:
One is this belief that ‘I am different – that I won’t get this disease.’ We actually
had a legitimate reason believing that at the beginning of the epidemic because
the first people, who were diagnosed, as far as we know, didn’t look like us – they
were gay white men. If you were a woman, or a black man, even a gay black man
you might have, what some would say, is a legitimate reason to say, or at least
think, you weren’t vulnerable to this disease. But as time went by, we saw our
cousins, or our friends or our loved ones becoming infected – that reason went
away. But, there was something strange in our consciousness that blocked us from
seeing the reality that was developing around us, and I think that, to a lesser
extent, still nevertheless, exists today, that there is still this denial that we, as a
people, or me as an individual, might be running the risk of HIV infection because
some of the decisions I make or the behaviors I have.


44
Social Psychology, Glossary, http://highered.mcgraw-
hill.com/sites/0073531898/student_view0/glossary.html

45
McWells, Charles. Chair, Grace United Methodist Church HIV Ministry. Personal interview. 21 January
2012
47

Phil Wilson argues further that HIV denial coupled with stigma exists among
black women and within the African-American community as a whole, which is a
dangerous combination that inhibits prevention efforts. He states:
There continues to be stigma that creates an environment of denial. One of the
major reasons why black women are at risk is because we are not having the
appropriate, graphic, explicit conversations among black women – with black
women – about HIV. We created an environment, where because of the stigma,
black women are in denial about their risk even when they know their risk, they
are often in denial.

The idea that HIV prevention can somehow be done on a superficial level, such as
being able to identify a person with the disease by their appearance, is a poor premise. No
longer does someone have the “look” of AIDS since anti-retroviral drugs have been in the
marketplace for nearly two decades. As a result, an HIV-infected person can easily go
undetected because the infamous Kaposi’s sarcoma skin lesions and drastic changes in
weight and appearance first associated with HIV/AIDS are no longer as prevalent. So,
when Simon suggests that some black women are basing their decision on whether to
practice safer sex on their partner’s appearance – “He doesn’t look that way” – he raise
an interesting point. Often, this selection method is used as a qualifier to determine a
person’s health status and gives a sense of false hope and misperceptions about real risk.
Simon again argues: “…it’s not the way to look at it. It’s [do] you want to take a risk?
…you’re putting yourself at risk for HIV – period. Know that. End of discussion. It’s
your choice.”

48

Conclusion
Faced with incredibly complex factors discussed throughout this thesis there can
be little wonder as to why African-American women in the U.S. are 23 times more likely
to be diagnosed with AIDS than white women
46
. As HIV continues to devastate black
women and the black community, the search for answers on how to solve the epidemic
among African-American women is frustrating. Not that the solutions are necessarily out
of reach – real progress is layered with complexity that even the most ambitious PR
messaging and communication program alone are likely unable to resolve.
The initial intention of this research was to uncover ways that strategic
communication could be used as a tool to increase awareness about HIV/AIDS among
black women, ultimately leading to behavior change. Given the findings of the author’s
primary and secondary research, clearly more work is needed.
With multifaceted issues facing African-American women (including poverty and
poor education) it will likely take a continued grassroots movement to turn the epidemic
around. Communications, then, would play an integral role in helping to shape messaging
designed to complement social change at the grassroots and national policy level.
However, by not addressing the hard-to-solve social problems that many low-income
black women face, prevention messaging is but a Band-Aid on a war wound.
Community outreach and strategic PR messaging can complement current
prevention efforts. That said, it is possible that even without fully solving the HIV
epidemic among black women, some change, at least moderately, is plausible. To
continue the fight against HIV/AIDS, more partnerships with HIV workers on the
ground, social organizations and grassroots health care activists will be the framework

46
CDC, HIV/AIDS among African Americans, Fact Sheet, 2007
49

needed to raise the volume on this issue. Despite the diversity of groups working toward
a solution to address HIV rates among African-American women nationally and locally,
the need for a single coherent voice remains urgent.
So far, the Obama Administration’s National HIV Strategy is off to a good start in
its attempts to address the epidemic among black women. To its credit, the CDC supports
national and community groups seeking to increase behavioral interventions for black
women such as SIHLE (Sistering, Informing, Healing, Living and Empowering), a
group-level intervention aimed at reducing risk behaviors among sexually active black
teenagers 14-18. The CDC also supports Sister to Sister that provides one-on-one, skills-
based behavioral intervention programs for sexually active African-American women
aged 18-45, to reduce sexual risk behaviors and prevent HIV and other sexually
transmitted infections.
On a local level, specifically across Los Angeles County, any hopes for a
successful HIV prevention for black women will have to be multilayered and
multifaceted to address the unique factors affecting African Americans in order to
achieve real behavior change. In the spirit of collaboration, it is important to unite the
most influential African-American health and service groups dealing with HIV under one
umbrella such as the Black HIV Providers Network. The Network comprises 17 groups,
including: Women Alive Coalition, Inc. and the Black AIDS Institute. Partnerships
should also include organizations like the National Coalition of Negro Women and The
Brotherhood Crusade that already have existing HIV programs. This network would
provide a rich source of resources and contacts to assist with appropriate strategies and
tactics for HIV awareness campaigns targeting African-American women.

50

As a recommendation, the following strategic communication plan offers ways to
incorporate community relations, strategic alliances, public affairs and media relations to
add more tools to help black women fight the continued spread among black women.
Communication Plan: African-American Women + HIV Risk
I. Background
On June 5, 1981, the first US cases of AIDS were reported in the Centers for
Disease Control & Prevention‘s Morbidity and Mortality Report
47
. Today, approximately
50,000 Americans become infected with HIV annually, and 16,000 people with AIDS
died in 2008, according to the Centers for Disease Control and Prevention
48
. As a result,
nearly 1.2 million Americans are living with HIV, and that number continues to grow.
While HIV/AIDS has been a national epidemic, African Americans bear the greatest
burden of the disease, especially African-American women. According to the CDC’s
2009 HIV surveillance data, women

represented 24 percent of all diagnoses of HIV
infection in the United States.
Although blacks represent only 13 percent of the U.S. population, according to
the Centers for Disease Control & Prevention’s latest data, they account for 44 percent of
new HIV infections in 2009. The HIV infection rate among African Americans is
disproportionately higher than any other ethnic group. As a group, it was almost eight
times higher than that of whites in 2009, and among African American women it was 15
times higher than white women.
The new face of HIV/AIDS has shifted from gay white males in the 1980s to
African Americans in the new Millennium. Looking at the current state of affairs, black

47
“30 Years of HIV/AIDS,” US Department of Veteran Affairs, http://www.hiv.va.gov/provider/campaigns-
30years-index.asp

48
Report: High Impact – HIV Prevention Strategy to reduce HIV infections in the United States, CDC
51

women are particularly at high risk, with astounding HIV infection rates that are linked to
a number of inextricable factors, including psychological, societal, economical and
behavioral issues that are attributed to driving the rise in HIV infection rates among this
group.
II. Business Goal

The overall campaign goal is to increase awareness about the risk of contracting
HIV/AIDS primarily among low-income African-American women, in order to motivate
them to protect themselves by using condoms during sex.
 Increase access to care by providing affordable sexual health resources
 Lobby policymakers to pass legislation by demonstrating the health and economic
impacts of successful communications outreach
III. Statement of Problem/Opportunity
Problem
Over the course of 30 years, there have been hundreds of HIV awareness
campaigns launched by the federal government, community groups, and NGOs. Still,
low-income African-American women shoulder the largest burden of HIV infection
rates. The need for more culturally-sensitive, gender-relevant outreach that stems
beyond traditional media relations and advertising is desperate.
Opportunity
The year 2011 marked 30 years since HIV was discovered. This gives the nation
a fresh opportunity to re-engage its efforts to reduce HIV infections across the US,
especially among heavily impacted communities like African Americans women.
52

The other opportunity is to develop a communication plan that has culturally
relevant and meaningful messaging and outreach tactics that impact the at-risk
audience: low-income black women in South Los Angeles.
IV. Research Methodology
Primary Research
Qualitative (Interviews)
The author conducted a series of 1:1 interviews with leading local and
national HIV activists and key community leaders in January 2012. A total of six
telephone interviews with varying questions were completed with key individuals,
including:
1. Phil Wilson, CEO/Founder, Black AIDS Institute, Los Angeles
2. Marvelyn Brown, Author, Young, Beautiful and (HIV) Positive, New York
3. Dr. Kevin Fenton, National Center for HIV/AIDS, Viral Hepatitis, STD and TB
Prevention, Centers for Disease Control and Prevention, Washington, D.C.

4. Charles McWells, HIV Prevention Services Manager, Los Angeles Centers for
Alcohol and Drug Abuse; Director HIV Ministry for Grace Methodist United
Church, Los Angeles

5. LaWanda Grisham, AIDS Counselor, John Wesley Clinic for Health, Los Angeles
6. Stephen Simon, AIDS Coordinator, City of Los Angeles Department of AIDS
Key Findings and Insights from Interviews

 Cultural sensitivity training needed for physicians/medical staff
During a 1:1 telephone interview with AIDS Activist LaWanda Grisham, she
mentioned the need for more doctors who “care.” Grisham, who has AIDS, described
an incident where she felt the doctor and nurse at a free South Los Angeles clinic
“looked down” on her. Because of their unprofessional treatment, Grisham, already
53

emotionally fragile, walked out of her appointment as the nurse put on a mask and
minimized contact during her medical examination. Also, while in the lobby, Grisham
mentioned the doctor asked her and other patients “not to touch anything” and “to sit
over there” as if they were being quarantined. According to Grisham, her experience
was not an isolated incident as she mentioned hearing similar stories from other low-
income, African-American women.
There appears to be a strong need for physicians and medical staff to undergo
sensitivity training in order to more effectively interact with HIV patients. The
appearance of apprehension or judgment coming from a doctor, as we’ve seen
LaWanda Grisham’s case, can impact patients to the degree that they limit or stop
their medical visits and treatment to avoid being judged or poorly treated.
 Peer-based Outreach
The author’s primary research showed peer-based outreach as a recurring theme
for raising prevention messages among low-income African-American women.
According to a 1:1 interview with Stephen Simons, AIDS Coordinator for the City of
Los Angeles, an effective strategy for educating and raising awareness about HIV
among African-American women is “black women talking to black women.” To
emphasize his confidence in the idea that peer-based outreach would be a good
solution to combating the disease, Simon stated “… If I had one choice on putting
money into one type of intervention, it would be predominately care-based work
where women are funded and given tools that share a much broader number.”
Peer-based outreach is also consistent with the author’s secondary research
findings cited in chapter six concerning black women as change agents in the fight
against HIV. The research suggests that black women have a unique ability to
54

validate the experiences and connect with other black women in a way that could
potentially encourage behavior change. Dr. Toinette M. Eugene, an associate
professor of Christian Social Ethics at Garrett-Evangelical Theological Seminary,
states in her article, There is a Balm in Gilead: Black Women And The Black Church
as Agents of a Therapeutic Community (Women & Therapy 1995), that “The strength
of their [black women] support networks provides a protective function for their self-
esteem and buffers the negative effects of societal stressors, such as race
discrimination, that might otherwise result in demoralization and low self-esteem.”
(Gibbs & Fuery 1994; Lykes, 1983; Miller, 1992; Myers, 1975, 1980). Thematically,
this intersection between peer-centered outreach and self-esteem offers a potentially
effective course of action that could empower black women to become their own
advocates for change.
Although peer-focused outreach appears to be a strong and viable route, results
from the author’s primary survey revealed a different narrative for raising awareness
about HIV prevention among low-income black women, which prioritized physician-
centered outreach instead. Historically, African Americans have distrusted the
medical community because of past illegal and immoral medical experiments
targeting them, including the infamous Tuskegee Study that took place between 1932
and1972. Three hundred and ninety-nine, poor black men in Tuskegee, Alabama were
used as guinea pigs and unknowingly injected with the syphilis virus so that the US
government could explore the affects the disease had in the human body
49
. Since
then, blacks have generally remained suspicious of the medical community. That said,
it is surprising that survey respondents believed that the most credible source for

49
Bad Blood: The Tuskegee Experiment, http://www.hsl.virginia.edu/historical/medical_history/bad_blood/
55

learning about HIV/AIDS and STDs was a doctor. Respondents ranked peer groups,
such as family, friends and church, as the least credible too. Although these sources
(peer groups, church and friends) ranked low in the primary research, they are
inconsistent with the large body of secondary research findings that suggest that
there, is in fact, the potential for these groups to be effective in HIV prevention for
black women. Therefore, the author of this thesis considered both findings and based
a strategic PR plan primarily on the insight of the HIV activists and workers
interviewed for this project because their work with the target audience (low-income
African-American women) as it provides more insight into ways to reach them.
However, other communication recommendations were based on the strongest survey
findings that also supported or complemented earlier secondary findings.
It is also important to note that the African-American women surveyed for this
report had differing annual household income levels between the target audience
(under $30,000) and survey respondents ($40,000 - $90,000+). This reinforces the
need to conduct research with low-income black women in order to find the most
effective ways to reach this target audience. To gain more clarity into this apparent
difference in perception between high and low-income black women, additional
qualitative research such as focus groups, could be useful.
Quantitative (Online Survey)
 The author conducted quantitative research through a voluntary survey
administered through social media. The survey was distributed to 100 Facebook
contacts and conducted January 9-25, 2012.
56

 Targets were part of the researcher’s Facebook “friends” list and ranged in age
from 18-50. Recruitment of respondents used a non-scientific convenience sample
methodology.
 Follow-up Facebook messages and emails were also sent to encourage more
participation and for respondents to pass the survey along to other friends, during
the period when the survey was active.
 The overall response rate for the survey was 90 percent, and was calculated as a
ratio of completed surveys among those invited to participate.
 90 (# of completed surveys) / 100 (# of Facebook friends contacted) = 0.90 x 100
= 90 percent
Key Survey Findings and Insights
1. The top three sources survey respondents identified as the best ways for obtaining
information about safe sex practices were: my physician (83 percent), media
(TV/newspapers – 47 percent) and blogs (32 percent)
2. More than half of respondents believed the earliest age when people should first
be educated about HIV/AIDS was: middle school, ages 10-14 (62 percent) and
elementary school, ages 5-10 (36 percent)
3. Respondents who said they sometimes don’t use condoms, ranked the following
reasons why: in a monogamous relationship (79 percent), knowing my partners’
sexual history (55 percent), and use of another birth control method (27 percent)
4. The majority of respondents (73 percent) said fear of contracting a STD would be
the factor most likely to motivate them to use condoms
57

5. Respondents’ ranking according to order of importance as the most common
perceived reasons why black women didn’t use condoms during sex were: poor
education, partner refused to wear a condom, and denial
6. Respondents ranked being rejected by their partner (51 percent), offending their
partner (39 percent), and angering their partner (33 percent) most highly in
response to the question “What do black women fear?”
7. Respondents ranked the most credible sources view to educate people about
HIV/AIDS and STDs as: a doctor and online sources. Among the lowest ranked
sources were family, friends and church, none of which received a high rank.
Secondary Research
The author’s secondary research included reviewing a variety of online and
literature sources, including academic journals such as American Journal of Health
Studies and Health Education and Behavior. Additional research included sources
from several medical articles and websites, media outlets, HIV community group
materials, HIV newsletters published by the U.S. Centers for Disease Control and
Prevention (CDC), fact sheets, website content and reports on HIV and African
Americans. The Kaiser Family Foundation’s website page on HIV/AIDS was a key
resource. All relevant sources used for this work are featured in the Bibliography on
page 64.
V. Situation Analysis
 Strengths:
HIV is a national epidemic that is highly recognizable as an important
issue that needs to be addressed. Efforts to raise awareness about HIV/AIDS
prevention is a top priority of the U.S. government.
58

 Weaknesses:
Much attention has been paid to the issue, so many women may have
information fatigue and overlook the relevance in their lives; For African-
American women, HIV is still associated with the gay, white community, making
it difficult to recognize the significance of the disease within the black
community.
 Opportunities:
The U.S. has an opportunity to re-engage in the national dialogue around
blacks and HIV, particularly given the exceptionally high rates of infection risk
and diagnosed cases.
 Threats:
The inability to reach the most vulnerable women, who are also at the
greatest risk for contracting the disease; the message not being received as
intended.
VI. Communication Goals
The communication goal is centered on raising awareness of the risk of
contracting HIV/AIDS in order to encourage more positive behavior changes and
safe-sex practices.
 Reduce stigma/shame of HIV/AIDS among people living the disease, their
families and the community
 Raise awareness about the disproportionately high rate of HIV/AIDS and its risk
factors among African American women

59

VII. Objectives
 Change black women’s perception about HIV/AIDS, by connecting the issue to
them as “their” issue and raising awareness of the disproportionately high risk and
incidence of the disease, by 25 percent
 Positively influence behavior change, measured as decreased incidents of risky
behavior (sex without condoms) by using peer-related outreach
 Raise self-esteem among black women to encourage them to become advocates
for their own sexual health
VIII. Key Audiences
Primary
 Sexually active low-income African-American women (ages 16--35) in Los
Angeles, targeting the South Los Angeles SPA 6 community, where 53 percent of
African Americans are already living with HIV/AIDS
Secondary
o Physicians across South Los Angeles (SPA 6)
IX. Key Messages
African-American Women
 You can’t tell by looking. Take an HIV test and know for sure
 You have one body. Don’t risk HIV over one night of passion
 You’re worth the wait – wait for the HIV results before you say yes to sex
 My dating rules for staying safe: 1. Exit plan 2. Cab fare 3. Condoms in my purse
 Your man is good – but not better than your health. Wear a condom every time

60

X. Strategies And Tactics
Strategy #1: Dispel myths about HIV (shame) by normalizing sex and showing how
HIV affects “normal” people through high-visibility individuals and entertainment
vehicles
 Tactics: Activate LAUSD HIV/AIDS Prevention Unit throughout South Los
Angeles Schools and give presentations to students and parents featuring
attractive, high-profile people infected with HIV, such as Magic Johnson and
International HIV advocate Hydeia Broadbent. Also feature common, age-
appropriate (young) people infected with HIV to discuss the natural desire for
people to want to have sex, but how protecting themselves is crucial
 Tactics: Partner with influential artists like Mary J. Blige and Trey Songz to
create an HIV protection-related song, which could be launched on YouTube to
encourage safer sex practices and provide lessons on how to negotiate condom
use in difficult situations
o In the music video, feature 3-4 different HIV risk scenarios featuring
“normal” youth and adult subjects, showing how they successfully
handle and/or negotiate prevention strategies. The segments might
feature 1) young black men who sleep with men (MSM); 2) a teenager
struggling with self-esteem issues who’s being pressured by her
boyfriend not to use a condom; 3) the 20-something low-income
woman; 4) the 30-something career woman who meets the man of her
dreams, but is unsure if he’s been tested
Strategy #2: Raise HIV risk awareness among black women through social
gatherings and social media
61

 Tactic: Target pastors at the top 25 churches across South Los Angeles to forge a
partnership to host HIV test days. These events would include a workshop on sex
health; safer sex practices like condom usage and abstinence in the absence of
condoms, and “How to Negotiate Condom Use With Your Partner.” There also
could be discussions with HIV-infected spokespersons. Possible churches could
include Faithful Central Bible Church, FAME and West Angeles Church of God
in Christ
 Tactic: Partner with known social media HIV activists to generate #hash tags to
engage users and promote greater awareness timed to coincide with health
awareness and HIV-related days
 Tactic: Create a roster of South Los Angeles HIV-infected women to act as
ambassadors and spokespeople for speaking engagements and media
opportunities, discussing issues of self-esteem and condom negotiation strategies
 Tactic: Fashion partnership with I Love Being Black, an online community that
boasts more than 5 million Facebook fans. The site celebrates African-American
culture and has a clothing and accessories line.
o Create a special edition HIV line to premiere in a pop-up fashion show
throughout South Los Angeles
o Promote the shows via social media and traditional media with stories
about HIV prevention
Strategy #3: Elevate HIV prevention in the African American community as a
critical public health and policy issue
 Tactic: Commission an independent economic study showing the financial impact
on health care costs on the county if the issue remains unaddressed
62

 Tactic: Strengthen local policies that affect access to health care services for low-
income people, particularly those with or at risk of contracting HIV
 Tactic: Train/educate physicians and health care providers across South Los
Angeles on black women’s higher risk of contracting to ensure proper diagnosis
 Provide medical professionals, including doctors, nurses and office staff, with
sensitivity training when working with HIV-infected black patients
Strategy #4: Make condom use sexy and trendy
 Tactic: Partner with Sir Richards Condoms (a socially-conscious company that
donates one free condom to developing countries for every condom purchased in
the US). The company has designer-inspired packaging and a branded bus.
 Include a mobile pop-up block party in key South Los Angeles communities with
high-profile community members, educators, celebrities, HIV testing, live radio
broadcasting and social media outreach (Tweeting).
Strategy #5: Empower black women by making self-protection and condom usage
more “beautiful”
 Tactic: Conduct outreach to black women in beauty and nail salons across South
Los Angeles to raise the volume on HIV risk and the need for safer sex practices.
 Launch the “Salon Series: Too Fly for HIV” that addresses ways that women can
protect themselves against HIV with free resources and information on testing
sites, counseling, etc. Supplement in-salon Series materials with an online
component, including a website and Facebook presence
 Tactic: Partner with a condom company (i.e. Sir Richards Condoms or Trojan) to
produce a condom pouch that would hide condoms in a mini purse (cosmetic
bag). By doing so, more women might be more apt to carry condoms in their
63

purse without the shame or embarrassment of someone accidently discovering
them. The pouches could come pre-packaged in a variety pack (i.e. flavored,
ribbed, XL Large, etc.) Encourage the I Love Being Black thought-leaders to talk
up the condom pouch so it becomes viewed as a fashion trend
Strategy #6: Boost self-esteem among young African-American

girls/adults

 Tactic: Develop “Sister Circles” throughout South Los Angeles that includes
clusters of 5-10 women who support each other and keep one another accountable
to making good sexual and life choices
 Tactic: Showcase national and local successful black women and youth in articles
and broadcast opportunities
Strategy #7: Make doctors compassionate HIV ambassadors
 Tactic: Target key South Los Angeles doctors and host a Brown Bag “lunch and
learn” series for physicians and their staffs at their office, to reinforce good
customer service practices and conduct sensitivity training
 Tactic: Educate doctors and medical staff on how to identify high-risk African-
American women and train them to properly assess and test for HIV/AIDS when
patients exhibit symptoms of the disease. Encourage doctors to make HIV testing
part of the regular medical examination for low-income African American women
and men
# # #
64

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Appendix A: Transcript
Telephone interview with Charles McWells, HIV Prevention Services Manager, Los
Angeles Centers for Alcohol and Drug Abuse; Director HIV Ministry for Grace
Methodist United Church. Date conducted: Tuesday, January 21, 2012 at 11 a.m.

BACKGROUND

1. How long have you been an advocate for HIV prevention?
Twelve years.

2. What is the name of the organization you're currently working with?

I'm currently the HIV Prevention Services Manager for the Los Angeles Centers for
Alcohol and Drug Abuse. Our agency has a couple of small contracts for HIV
prevention, and my area of focus is prevention for gay, black men. I have a
background in marketing [and] sales. I worked on Wall Street for some years as a
political economist, so I've done a variety of different things prior to entering this line
of work.

3. What drew you to this line of work?

I was diagnosed with AIDS in '96, and I was really looking forward to about two
more years of life based on the doctor's prognosis. And like a lot of people who find
themselves in a life-threatening situation, I did what most of us do, and that is, pray
for reprieve or another chance. And part of that prayer process involved me promising
that if God did spare me from that disease, then I would do what I could to help other
people living with it. And lo and behold, right at the time of my diagnosis, they came
out with the anti-retro virus medications. And so, I was able to take those and twelve
years later, I'm doing well and realizing I had to fulfill that promise. So, I started
volunteering at the same agency I was receiving services as a client. And ultimately,
they liked the work I did as a volunteer, so they hired me to be a sort of a secretary,
their receptionist, and one thing led to another, and before I knew it I was actually
running programs and doing research and being a community activist. And here I am
today still doing that line of work.

4. What the name of the first organization that hired you from being a volunteer?

Spectrum Community Services. It's a client services agency that's part of Drew
University's Center for AIDS Research, Education and Services. It was founded in the
early 90's by Dr. Eric Bing who is an American AIDS researcher.

ABOUT BLACK WOMEN & HIV

5. We talked at length about the statistics for the black community, but specifically,
for black women. I wanted to get your thoughts on what you think are the
factors to why African-American women continue to become affected with
HIV/AIDS?
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I think the factors that impact women, and have kept them since the beginning of the
epidemic, among the highest groups of affected people, is the same as the factors that
affect a lot of other groups: black men; gay men; youth. One is just sort of this belief
that I'm different; that I won't get this disease. We actually had sort of a legitimate
reason, more or less, for believing that at the very beginning of the epidemic. Because
the first people who were diagnosed, as far as we knew, didn’t look like us. They
were gay, white men. And so, if you were a woman, or a black man, even a gay, black
man, you might have what some might say was a legitimate reason to say that, or to
think you weren’t vulnerable to this disease.

But as time went by, we saw our cousins, or our friends, or our loved ones becoming
affected, that reason went away. So, there was something strange in our
consciousness that blocked us from seeing the reality that was developing around us. I
think that to a lesser extent, still nevertheless exists today. There's still this denial that
we, as a people, or me as an individual, might be running a risk of HIV infection
because of some of the decisions I make and some of the behaviors I have.

I think a second reason is, and it might seem sort of strange, in the white community
there is less of reluctance or less stigma associated with this disease. And part of the
evidence for that, is there are relatively large numbers of so-called celebrities, who
have either come out as HIV positive, or who have done advocacy work in the fight
against HIV.

6. Why do you think that is?

I think that the taboos that are linked to HIV: homosexuality; drug use; sexuality in
general; aren't as severe among whites as compared to black folk. I think black folk
are more conservative when it comes to those issues. I think that the black church has
done a great disservice – and I'm a member of an African-American congregation; I
have founded an HIV/AIDS ministry at my church; I'm very involved in faith-based
work – and yet, I'm the first to say that the black church has done a huge disservice,
generally speaking, to our people because they have reinforced some of those stigmas
and taboos. Most black churches have never addressed HIV/AIDS, or if they have,
they've done it from a very negative perspective; talking down about gay folk, or
people who are drug addicts, or furthering the stigmatization of those who are at risk,
or living with the disease. And I think people hear that and they're impacted by that.

If you have an institution –the black church has always been, probably the most
influential institution in the black community (historically that's been the case). So, if
the church is speaking negatively about this, or not speaking at all, that {???? time
stamp 7:57} and impacts people's belief systems. And if it impacts your belief
systems, it will ultimately impact your behavior. If you believe that only a certain
type of person is {???? time stamp 8:16 } to becoming affected, and you don't see
yourself as that type of person, then your behaviors are not going to align with
prevention. I think that's another factor that's led to increased infection rates among
black women, as well as black people in general.

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One more thing that is specific to women, I think there are a number of dynamics that
impact women's perceptions of their ability to protect themselves in general. Women
tend to be caretakers in our community, and so they will often not take care of
themselves. They put the children first, or mama first, or my friends first, or even co-
workers and neighbors, and will ignore their own health. So when you're doing
everything to do to help everybody else, you don’t have any energy to go take an HIV
test yourself. On the flip side of that, you also have women who, in many cases,
don’t feel empowered to use protection--to talk about prevention with their make
partners for a number of reasons. And I think all these factors combined have worked
together to make women very much at risk for HIV infection.

7. So speaking about the idea that some women might not feel empowered: what
does that do?

Well, there's an absence of eligible men in the black community. Many African-
American men are either incarcerated, or otherwise not available, so there's huge
competition among women for eligible, heterosexual black men. And when you have
that much competition, in some cases, women will see themselves as- if I'm going to
get a man, I'm going to do whatever I need to get him. And many men opt not to use
condoms, and don't want the woman to ask them about condoms. And so, in this sort
of situation, it's not unreasonable [sic] to see a woman make a decision not to bring
up the subject of safer sex, because she perceives that as something that would
threaten her ability to have a relationship with this man. This is what some of the
clients we have worked with have expressed to us. And I think it's a powerful
dynamic that plays out in a lot of situations and we don’t talk about it.

8. So what do you think is the answer?

I think [black] women need to be more vocal and more visible. I think, in particular,
HIV-positive women need to be seen. We need to have our own Elizabeth Taylor's
out there who are talking about prevention and the importance of that. I think in a
more general sense; HIV doesn't happen in a vacuum. There are a number of other
sociological factors that impact my risk for HIV: poverty; lack of education; racism.
All of these things have to be addressed. If someone loves themselves, they are much
more likely to want to do whatever is necessary to protect themselves. So, we have to
find ways to engage people and have them want to stay healthy, want to do what's in
their best interest.

If you look at smoking rates among African-Americans; our rates of smoking are
much, much higher. Everybody knows that smoking puts you at risk for a number of
diseases including, heart disease, lung cancer, etc. Nobody doesn't know that
anymore. So why is it—it's not lack of education that's the problem, it's the fact that
there are other factors. But if I love myself enough to not want to die from lung
cancer, I'm much more likely to go to a smoking cessation class; to get some free
patches from my doctor and wear them; to join a support group; or do whatever I
need to, to stop smoking. And I think that sort of example applies to HIV, too. I have
to be empowered enough to want to change behaviors that put me at risk for death.
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9. Would you argue that the lack of self-love would be the main contributor?

I think it is. And it's a very nebulous thing to talk about. It's seemingly unconnected to
something as concrete as HIV infection rates. But I think it's at the root of the
problem. If you go back to 300 years when we were first brought here, everything
that was done to us tended to reinforce our belief system from society; that we weren't
worthy of love; that we weren't worthy of protection; that we weren't even fully
human. And if you hear that enough, hear that lie enough, eventually you believe it.
And it's takes a tremendous amount of strength, and resources, and willpower to
overcome 300 years of indoctrination. So, the {???? time stamp 15:00} status of
African-Americans I think is very much related to the historical legacy of slavery and
oppression, as much so as it is related to other epidemiological and scientific factors.
All of that has to be addressed when you talk about really finding permanent,
meaningful solutions to HIV infection rates.

10. Going back to your introduction when you talked about your work with gay,
black men: what have you seen that works in the white, gay community in terms
of combating the HIV/AIDS rates? We know that they are still at high-risk, but
it seems like at least that their numbers are at least stabilizing.

Yeah, they're going down in fact in many parts of the country. I think that there was
the opposite of the factors I just described. Even though white, gay men have also
been the victims of oppression, I would argue that that oppression hasn't been nearly
as bad as the oppression faced by black folk. So, they had a comparative advantage.
And so, what they were able to do was to unify as a culture and empower each other.

If you go to West Hollywood, for example, you can see white, gay men walking
down the street openly holding hands, or embracing each other, laughing in cafes.
You can't do that in the African-American community. There is no equivalent of
West Hollywood in Leimert Park. In fact, I would argue that with very few
exceptions there aren't places where heterosexual African-American people can be
openly loving and supportive. Why that is I think is the subject for someone who has
more training in sociology than me. But I'm just dismayed by the fact that when we
walk down the street we don’t even greet each other. That when I'm standing in line
with my groceries at Ralph's and there's a black mother in front of me with three
children, she will curse them out with some of the worst profanity that you can
imagine a person using, or physically abuse them.

I think something has happened to us over the last few generations that have
disconnected us from loving and supporting not just yourself, but also each other.
And that's not the case with the white, gay community. I think that they, while being
oppressed too, they had certain things in that culture that made it easier for them to
come together in a time of crisis. And that those factors don’t exist in the black
community.

11. Going back to your discussion about the church, do you believe that if the black
church were more active that you would see a change in those numbers?
78

Absolutely! The church has so much influence and has historically in the black
community, that if we saw a reversal of these ecclesiastical taboos; and if you saw
some courageousness on the part of some of our leading ministers; if they would
stand up and love and support this population as much as they profess to do for other
populations, you'd see a gradual shift and change of belief systems.

There have been a few positive things that have happened over the last few years. I
believe it was in Philadelphia a few years ago that 100 black pastors had the courage
to take an HIV test at a public event. That action probably did more by itself it that
community to encourage people to test and to change their opinions about HIV,
significantly, maybe not completely, but significantly than any other single action had
over the last 30 years, I would guess. It takes more of those types of actions. I believe
the church eventually will. If you look over history at other social movements, the
black church has been in the forefront as a progressive agent for change. But most of
the time, they weren't there initially; it took a while. Even the abolitionist movement,
the churches tended to be quieter about that-- advocating for the end of slavery. When
you look of the war of poverty, the voting rights act; the movement against Vietnam;
the support of the women's rights movement; the church eventually came along, but
Martin Luther King was reported as saying that the church had been silent issues of
justice for a while, and he was critical of them and we tend to forget that. So, it's
going to take a little while longer, I think, for the church to really see the truth of the
role that they should be playing in this fight. And I believe that ultimately it will
happen. It's just frustrating that it's taking so long.

12. What do you think need to be done for black women and HIV/AIDS to go down?

I think people in our community are, for better or for worse, are very much influenced
by opinion makers--opinion leaders. We need more than Magic Johnson to stand up
and talk about the importance of wearing condoms and protecting yourself from HIV
infection. There are a bunch of HIV-positive celebrities who are so underground
about their HIV status that only a few of us know about that. They need to have the
courage to come out and talk about what's going on with them. If people can start to
see people who look like them stand up and say, "I'm positive", or that, "I'm negative
and I don’t want to become positive and here's what I do to protect myself and the
people I love," then that will tend to have a change in beliefs within the community.

I would love to say that we don’t need to have celebrities lead the way – which we
should have enough self-advocacy to be able to bring about behavior change on our
own, just because of internal motivations t change and stay healthy. But
unfortunately, when you deal with people who have been damaged like we have,
you're not often healthy enough, emotionally, to make those kinds of decisions
without a lot of help—without being pulled and tugged and dragged by external
forces. So, I think we need more external stimulus from people who are opinion-
leaders in our community.

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I think that in addition to that, there's always the need for more funding. When you
look at HIV dollars, you see that there's been a radical reduction in state, local and
even national funding for HIV programs, particularly in terms of prevention. And
we're about to see later this year—we're about to see another reduction in the state of
California in HIV funding. So, if dollars continue to go down, infection rates are
going to continue to go up. There's a direct inverse relationship between the amount
of money you spend and the infection rates. Money is a factor.

And finally, I think you need to have our national leaders stand up and take the
initiative in talking about this and giving unconventional sources of support the
resources that they need to help address the epidemic—churches, to use that example
again, have the potential for really doing a lot to help stem the epidemic. But here in
the county of Los Angeles, for example, a year-and- a- half ago, the main
organization that deals with HIV spending, the Office of AIDS Programs and Policy,
withdrew a grant proposal that would have provided funding to a network of black
churches that could address HIV. The money was offered initially, a lot of black
churches came to the table and said we're going to write grant proposals – they spent
a lot of time and resources putting those proposals together and then without any
notice at all, the county withdrew the funding opportunity. When you do that, it not
only prevents creative, unconventional solutions to the problem, but you also
discourage the people who were behind the scenes working so hard to bring about the
solutions. And it's much harder next time to go out and say we changed our minds,
were going to put the money back on the table again – it's much harder because
people become reluctant to do the work because you don’t have a good track record
in convincing them you're serious about supporting them. So, I think those three
things need to happen before we can really see the possibility of ending the epidemic.

13. So was there an explanation why the county withdrew its support?

I received an explanation. I was one of the people writing the grant proposal for my
church. And the explanation given to us a year later was that they did in fact notify
the churches that the money had been withdrawn and the reason why. I don't recall us
every receiving that notification. But the reason supposedly, was that none of the
proposals that had been submitted were up to par. And I'm just not satisfied with that.
We weren’t told why they weren't up to par. They didn’t say let's try to help you
make them up to par because we believe this is an important project. They didn't do
anything. They simply took the money off the table and spent it on something else.

14. Do you remember what or who the money was spent on?

I don’t know. I wasn't able to track it like that.

15. Who was in charge at that time?

The director was Mario Perez. And I spoke to Mario about this and we're still waiting
two years later for a new round of funding to be offered.

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16. Do you have any advice or last words to offer black women to protect themselves
from HIV/AIDS?

We know from a ton of studies that black folk are more at risk for HIV than other
groups; that black women are particularly at risk from HIV; that if you are HIV-
positive – that 25% of the people in L.A. County who are HIV-positive don’t even
know it – they can extrapolate from the small surveys that they do that a fourth of the
people who have the virus haven't tested, and therefore don’t know it. We know that
testing early in the progression of the disease, if you remember things, not only will it
tend to keep you healthier, but it will radically reduce the chances that you can pass
the virus on to someone else.

So, when you put all those things together, it suggests that it's really important for
people to test. So, the question then is: how to you get them to test? And my idea is
that you pay them to do it. It's much more cost-effective to pay someone $10 every
three months to go and take an HIV test if they fall into a high-risk group: someone
who had multiple sex partners; someone who's a drug user; all gay, black men. I
would make a list of categories of high-risk people and say if you meet these criteria,
we will pay you $10, $20, per test every three months. And if those people are found
to positive, link them directly into care with agencies in their communities.

It's more cost-effective to do that than to wait until a certain proportion of those
people become HIV-positive, and then tries to provide them with twenty years of free
medical care, thousands of dollars per year in medication that taxpayers are going to
pay for, housing subsidies, food programs. I wonder if anybody has done a survey on
how much we actually spend. They've certainly done it for prisoners. They can tell
you how much money it costs per prisoner in the penal system of California. I'd like
to see research done on how much money it costs per patient who is diagnosed with
HIV. I bet you it would be $50,000 to $100,000 per year. It's got to be, because the
medication alone is expensive. So, when you look at that and compare that figure to
spending $10 a month to test someone, I think you see where it makes more sense to
do it. Now, will we ever do it? No. No politician is going to advocate for that line
item in the budget. It will never happen. But I think that is the kind of thinking that
we have to have if we're going to come up with creative solutions. We have to be
fearless in brainstorming creative solutions to this.

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Appendix B: Transcript
Telephone interview with LaWanda Grisham, AIDS patient and counselor, John
Wesley Clinic for Health. Date conducted: Friday, January 13, 2012 at 7 p.m.

BACKGROUND

1. [First part of question unintelligible]…clinic, is that what it is? What do you
do there?

It's a health clinic. It's John Wesley Clinic for Health. And it's downtown, skid
row. The department that I'm in is the HIV department and The Lady of Diversity
Program. What we do is targeted to women of color who are HIV-positive, who
have fallen out of care. What we try to do is to link them into care, whatever type
of care that they need, and try to find out what it takes to get them into care. We
track them for about 18 months. We have case managers who do the tracking and
they'll make appointments for them to come in, find out what progress they've
made. We assist them in their progress in life. Directing them towards where they
can receive support groups. life skill training, case management, therapy, primary
care doctors and stuff like that.

2. How long have you been doing that work?
It will be a year in a few more days. I started out volunteering to do something. I
know it was the Holy Spirit. I am spiritual because I trust and believe that if It was
not for Jesus Christ I would not be here. And having some spiritual experiences, I
know it to be true. So it's like he lifted me up and placed me back into a place
from which I came. I have never been down on skid row, well, back in the day,
maybe occasionally. But I was basically situated in mid-city, off of Washington
Blvd. and La Brea, over that way. So, when I found myself down there, at first I
kept saying, okay, it's alright I can do it. I had been taking some HIV 101 classes
and peer support training with Women Alive, another organization, so I got the
training and it more or less built my confidence up to where I wasn't ashamed
anymore. I was pretty much getting over not being particular who I spoke about it
to, you know, say if it helped somebody. Once upon a time, I wouldn’t open my
mouth. Where now, if me disclosing myself will save someone's life, then so be it.

I'm not afraid anymore. I've outed myself. I was in the Wave paper for APLA for
when they opened their dental office as a spokesman because I had used their
facilities. The one that they opened in Wilmington by the Oasis Clinic (King
Drew), where Charles McWells is affiliated with. That's where I started. And
then from there, as I started getting my feet wet, like I said, the Holy Spirit moved
me and sent me downtown. And at first I said, Oh my God what have I done?
Because I had no trust in myself, still, as far as recovering from drugs myself. For
years I didn’t think I was strong enough, you know my faith was a little shallow.
My faith wasn't lifted at all. We're on San Pedro. The VOA it's in the Midnight
Mission. It's a place where they can go and watch TV, lay down and
[Unintelligible at 4:49] and what have you. And one of the ladies that was
82

working with us, you know help showing us around and everything, she worked
for the Heart Program which is another, it's a risky behavior program, teaching
women what a risky behavior is, and how they can kind of catch themselves, you
what I'm saying, before it happens and let it rise up in their minds to be aware of
what's going on.

When I got on San Julian, I saw everyone I knew from my old neighborhood. So,
like I said the devil he's tricky, he's shifty and I have no use for him. But I got
blindsided, so, I went across the street and was talking to everybody; you know:
how you doing? Giving them the flyers about the [Unintelligible at 5:48]. But
one of the old homeboys [Unintelligible at 5:50) and handed me the pipe. I'm
standing there looking at him like… But I caught myself and you know I said, oh
Lord help me. I politely crossed the street, left everybody there, walked back to
clinic, called my director and I explained to her my triggers and traps. I know I'm
not strong enough. I walked away from the spirit, you know? You understand
what I'm saying? I walked [Unintelligible at 6:20] God's hand. Instead of me
walking with him, I walked with the flesh. And that kind of did me for a minute,
but after I got my house back in order, I started thinking about there is a
downtown women's center. 'Cause I started thinking, okay, I'm not walking into
Satan's den. Because you understand spiritually, it doesn’t make sense if I already
know what it is, why would I go there, and I wasn't set.

So, what I start doing was going to the Downtown Women's Center…are you
familiar with it? It's a facility for homeless women where they can come and take
showers; they can come and sit down and watch TV; they're fed 3 times a day. It's
a nice place. And they have apartments for them after certain ladies meet certain
requirements. So, it's a skill-building facility. They can do computers and you
know they wash their clothes, and you know, so there's still hope. So, I would
outreach there and I was getting, and you know because being downtown is very
clique-ish. If they see a new face, they don’t know you. For whatever reason it's
hard for them to get there. 'Cause I remember when I used to be out in the street,
it's like, they're just coming to be nosy. Yeah, I smoke. You understand, kind of
relate to what I'm saying? Yeah, just becoming familiar with it.

3. You mentioned you were homeless. How long were you homeless?

Wow, off and on, I'll say about 4 years.
4. And do you recall when you were first diagnosed?
I was diagnosed in '96. My husband was diagnosed first, my common-law
husband. Yeah, he at one time used to shoot dope. And when I got with him, he
had stopped on his own, so not knowing the consequences of shooting dope, I'm
thinking that's good, you know, that he quit. When he died, we would have been
together 17 years. So, I know that he broke out in lesions, like where the blisters
and everything. And I kept telling him something was wrong [Unintelligible at
9:37]. And he got referred to California Hospital, cause USC County Hospital,
83

they gave him calamine lotion. They never diagnosed. They never did nothing.
You know, people didn’t know, I guess. I don’t know what happened. I kept
fussing. I kept saying, something is wrong, and in the back of my mind…I didn't
know too much about HIV or AIDS. One of my family members had died from it,
I'd say like 3 years prior to this. I thought it was a gay disease. I didn’t know. He
was gay, and my aunt and uncle they, my uncle was pissed off at him to begin
with. I think it kind of broke his heart, but my aunt was embarrassed to the fact
that he had HIV. She would never say it, but I found out that he had it. But that
was still my cousin. I'm just like that with family, I don’t care. I wish I would
have been able to help him.

So, then like I turned around in '96, and when the doctor-we went to California
Hospital- and she's a lady from India-she's a doctor. And when—I wish I knew
her name, and I wish I knew where she was 'cause I'd hug her 'cause I'm still
alive. But, she told my husband, "I've got good news and bad news", you know.
And where California Hospital is situated, I was sitting like in the window seat
looking out at the window. You know it was a nice day. I'm thinking about what
we going to do when we leave. And he said, "Well give me the good news first".
She said, "you don’t have cancer". He said, "Well what's the bad news?" She
said," you have AIDS." I could have fell out that window. Because I knew I had
it. There's no way in the world I didn’t have it if he had it. So, immediately, I lost
it. We still lived in mid-city close to Fairfax. And I remember we walked all the
way from California Hospital and cried every step of the way. I know I did. I
cried every step of the way. When we got to the door, I remember him telling my
daughter, "we got AIDS." And I walked straight to the bedroom and I didn't come
out. I couldn’t figure out why the world kept going on. I had AIDS. You know, I
can say that now, but at the time, I didn’t know what was going on.

5. Did you have full AIDS that this point?
It was AIDS symptomatic.
6. Are you symptomatic now?
I'm undetectable now. Diagnosis was [Unintelligible at 13:08].
7. So, you're on your medication?

Yes.

8. With your husband, when he had stopped using drugs, were you using in
between the time you were him, or was it just sexual contact with him that
was how you got it?

It was just sexual contact with him. I never shot dope. It was the sexual contact.

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9. Were you aware of HIV before you were diagnosed?

I only knew AIDS. I knew nothing about HIV. You know I still hear people say
that today, but now we say it HIV/AIDS. But by saying it like that, people think –
I still hear people say well they say AIDS- and I've gotten into some big
arguments because there is a difference. But you know, I mean, one leads to the
other and the other leads to death if you're not – if you don't get it under control I
time. Because you can't [Unintelligible at 14:42]. But it can happen

10. In terms of black women, what do you think is the reason that black women
are getting this disease at higher rates than other women.

Aren't they scary, the numbers? We're doing training and a close friend of mine
looked at me and said, "what's wrong?" And I laid the ink pen down and I said,
"we gon' die, and it's not gon' be nobody left." I said, "something is wrong," and I
burst into tears. I had to go see my therapist. I got to take off a couple of days
from volunteering. I said, "right now I can't do HIV. I have to get a grip on
myself." But he kept saying, "you got this far, how you gonna stop? He said , "but
just remember, you can’t stay[Unintelligible at 16:06] with yourself."

11. Do you still see a therapist? How long have you being them?

Since I was diagnosed. Not as much now. I still think I need to be connected
because there are days that do rise up when I don’t want to be positive. That's the
best way I can say it. You know where you just say, "damn." But it doesn’t linger
as long. My bouts with depression –I'm able, I've got my tools together now, to
where I'm able better to express the emotions that come inside me, instead of, you
know, trying to hold, push them down, and keep them inside. I've learned to
express better what's going on. And I believe a therapist is always good to have to
talk to.

12. Who taught you those skills? Where did you learn those coping skills?

Um, I've been to adherence counseling. I've been to support groups. I've been to
HIV 101 classes, I think about three of them. Peer support training, Educational
forums and it helped.

13. Where were those forums taking place? Churches or organizations?

Most of them were at organizations. The – toward the last ones, I've been saved
for the – I got saved, what, going on, it'll be three years ago this Mother's Day.
Um, and by me taking, going to Bible study, and then I took how to study the
Bible course, so I could better understand what it is it's saying and become closer
to God. And to be able to know the principles and understand the
commandments, and understand it's not just a book. These are my life guides and
I'm learning to work them into my everyday living. And, I don’t need depression
in my life anymore[Unintelligible at 18:47]. I mean there will be days when it
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happens, but I know what to hang on to. I have hope. I have faith. My faith is
strong.

14. What do you think has been the most helpful thing for you to cope?

Coping with it is being able to have others, my peers, to have others to talk to;
women my age. Being able to like help the newbies diagnosed, because in them
I see myself.

15. How old were you when you were diagnosed?

Wow, you want me… Okay, I'm 58, so in 96' I was like thirty-something. At that
time my life, what I considered living, was a beautiful life. We both had jobs. We
had an apartment. My daughter was thee. You know, it was good. And we loved
each other. We walked down the street holding hands and you know that kind of
stuff. You know, and he was my best friend. We became friends before, you
know, I mean, he liked me. It's like a story love. I was the one that kept
[Unintelligible at 20:35]. I was like, I don’t know this man, but he wouldn't stop.
So, we got to know and we'd go for walks and talks. You know I got to know him
before all the other, you know, before the intimacy and all of that. And
[Unintelligible at 20:49].

16. When you were intimate the first time, did you use protection at all?

No. See the era I come from, I was never told about condoms. I didn’t even know
how to use them.

17. Where did you grow up?

In Michigan.

18. When did you come to L.A., California?

In '76. My daughter was 5 years-old when I came.

19. What do you think is the reason black women are becoming more infected,
in your opinion?

In my opinion, you know 'cause I wondered about that when I saw the
numbers. Um, wow, well the women I've run into, and including myself, it's
due to, a percentage of them, it's due to the fear of not having a man. The fear
of asking too many questions and [Unintelligible at 22:07]. A lot of times it
can be abuse. The fear of, they suspect may be on the down low. Or maybe
sometimes they know it, believe it or not, and will still accept him. And we
have a tendency to not want that social pressure, regardless of your income, or
where you're at in the pay scale or what have you. It's that social pressure also,
'cause we as women are very cruel to each other, at times. As black women
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we tend to place standards on others. You know, we pass judgment. And it
causes a lot of people to hide what they've done, or hide what they know. And
it's sad.

20. In terms of that fear, of not having a man, what do you think black women
need to get empowered, to not be afraid to ask a man to wear a condom, or to
be more assertive about themselves in a relationship? What do you think
black women need?

I think after I've gone and learned and everything, 'cause I've been celibate for a
while, I'm not done, but I'm very conscious, is to – it comes from inside. You
have to start to learn to love yourself, first. I believe become friends with
yourself, as a whole, to learn what is needed. Set some type of goals up—a
purpose in your life. And then when you do find a man and you think that that
might be it – but sometimes we think that and it's not true, but, before we do let
go of our own self and who we are, we must find out who this man is. Who is this
other person? Get to know, I mean, [Unintelligible at 24:34] , yeah they
came from the neighborhood, and I know so-and so because this person said…No.
You need to know some background. Like where did you grow up at? What is he
doing for a living and does it meet your standards of living? I think you
understand what I'm saying.

21. In terms of the women you see and talk to and counsel, what do you think
they have in common?

Lack of self-esteem, most of them. The hope is gone. There's no light in their eyes
anymore. It's a light, some of it, some of them; it's a [Unintelligible at 25:23].
Situations in their lives that have just piled up. You know we as women carry
baggage to [Unintelligible 25:32] already. And then say, you're going through a
period, say you're going through a problem with your kids, or they've been taken
away or you have a drug addiction, and then you get this extra bag called HIV.
That just, some people, like I said, it blew me out of the water. I stayed there for a
while and just to be told after that diagnosis that's [Unintelligible at 26:00]. I
mean, I had a facilitator that told me, she does the needle exchange right?
[Unintelligible at 26:12] and stuff. And she said that she would have a small bout
with cancer, or like a cyst or something, and because I guess the doctor, or the
clinician or whatever, came in the room, and he must have had someone else's
chart with him, and she saw AIDS and she had a fit. And what it was, was she
started thinking she had AIDS and they were coming to tell her she had, they had
found cancer in one of her, wherever it was. And she said she didn’t care about
the cancer, it was the AIDS. But you see what I'm saying, how people can still
have these deadly diseases, but AIDS just blows them out the water. It's the
stigma behind it. Because all diseases will kill if not treated and the person does
not adhere to the conditions of their body, I believe. That's how I look at it. I'm an
optimist. I have hope in everything.

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22. What do you think needs to be done so that more black women are
protecting themselves that these rates start to at least stabilize? What do you
think needs to be done?

Right now, I'm working on the faith-based organizations; the churches. A lot of
them have their outreach ministries and what have you. And I'm noticing a lot of
churches now are coming to the realization, I mean they still preach the gospel
and what have you, which is beautiful, and I think it's needed also, but at the same
time the gospel if it's read correctly and in the right manner, I still related to
today's living. You know, like when they had leprosy – Okay, let me get back on
subject. What I'm saying, is we need more educational forums. We need more
women support groups – heterosexual women – well it really doesn’t matter, even
the gay and lesbian, because they are infected also. You know prior to maybe, that
may be why they do as they do, I don’t know. But, like I say, more educational
forums, more support groups because right now I think we're down to maybe
three, women's support groups. They're struggling. Like the billboards, you only
see gay men, and everybody's smiling. You see no women.

23. So, you're saying we need more images that reflect black women to affect
HIV?

Yeah, we need more women to stand up and speak. You know, it's like in the
neighborhood watches, you know, or even on a local level, the more of the
neighborhood watches, the community centers, sometimes you know, hold the
rallies in the park and different things 'cause there are people walking around and
they're afraid to talk. It's scary. The educational forums work.

24. Where do you think black women will be receptive to go to hear these
messages? At churches, at the parks?

I think a lot of times, okay some of the education forums, when you take them to
like the clinics and stuff that is a barrier. That's a wall because a lot of them will
think somebody's gonna find out. So, like at your different recreational centers,
like say like, in the different areas and what have you. There's a California
Endowment Center, places like that, Your fraternity your sorority sisters; it's time
for them to come and join us, you know. And I think if we all come and get on the
same vibe and have, 'cause we all have hope – but it's like to me, being infected,
and I watch some of the things that are going on, it's like I watch organizations
fight for numbers. We're human beings.

25. What do you mean fight for numbers?

Okay, well, a lot of organization to even be able to set up their programs and to
run their facilities, they have to have a certain head count. Certain numbers. Okay,
and I think that is the reason why a lot of times people fall out of there, they get
lost. Because the jobs that some of the case managers have had and stuff, 'cause I
know Obama's [Unintelligible at 31:31] has a strategy program out now that is
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trying to turn this around. But, before it was like they were so worried about their
jobs and getting those numbers in just to sign people up, whether they
[Unintelligible at 31:46] there or not, they didn’t care. And that's why a lot of
programs have lost their funding. That's how the funding is done so, it's crazy. It's
got to be a better way, less paper work, and more empathy, more compassion.
And I understand the doctors are busy, but the language…

26. What do you mean another language?

Well, when you go into the doctor's office and they're talking about CD4s and you
know the medical terminologies, the everyday African-American woman does not
understand what the hell he's talking about. And out of pride and not wanting to
look stupid or ignorant, we won’t open our mouth, because it's the doctor. You
know, through the ages, the way we were raised from the beginning of our
existence, you know with the myths and it was certain things you did, and certain
things you didn't. Like I remember my grandmother and my mother, and I even
had caught myself doing the same things, which I still do, some of the same
traditions, where when you go into the doctor's office you dress up and look real,
real nice. And when the doctor asks you how you feel, you say, "fine." So, if you
don’t tell the doctor, how will he know? We have to break that, and understand
that he is the doctor. And if we don’t understand what he's saying, [Unintelligible
at 33:28] and keep that rapport going until you better understand. Ask questions.
You know we need better communications. With the physicians, you know, down
to the nurses, you know because you'd be surprised a lot of the clinicians and stuff
that have jobs and they're fearful of us. There has been situations where I'm like,
well clinically you know that, but there is a clinical side and there's our side. We
live with this.

27. Give me a situation where you remember, or a situation where you heard of,
I guess where the clinician was afraid. What was that?

It was in Los Angeles, where the people were coming-it's a clinic- and as they
came in, they would stand there and just look at them and then just say, if some
people might be kind of sickly, or what have you, just say well you come over
here. Well no, no, don’t touch that, just sit there. Or else, I had one put on a mask.
And then she wondered why I didn’t come back. And this was a long time ago.
And to this day I have run into this doctor, and she was an R.N. (unintelligible
conversation). It was like I had cooties. He was supposed to do the pap, you know
the pelvic exam and everything. He wouldn’t do it. He would not do it. He said,
"you'll just have to go to the hospital." I'm like, "wow." And you know that
doesn’t help people. A lot of people don’t even know how they got infected. So,
how dare you judge them? You know, I learned a lot being infected. I learned a
lot. When I realized I wasn't going to die, I said, “well it's time to get up." And he
lifts me up.

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28. How does your family respond?

At first, I was afraid um, when I got diagnosed, my birth mother had um, was in
the hospital, she had just had a heart attack. And, she and I had just got it really
talking again and everything, and I had nobody to talk to. And then my aunt out
there passed away. So I felt alone. So, the rest of my family, the ones I was close
to, one of my cousins I told, and she hugged me you know, and I cried and we
talked. And so, my family loves me, basically. You know they may – I come
from a very big family. Not brothers and sisters, but, you know, relative wise.
And they love me. They all call.

29. How did you get linked up with Mr. McWells and the church program? Are
you a participant with the church program, or are you – just know him on
another?

Where I'm at is a different church. But he called me one day to do a panel
discussion. It was my first panel discussion and I honestly and truly don’t know
what I said. The Holy Spirit spoke. I do not know what I said. All I know is, they
were, people were on their feet. I mean I have to give the glory to God, because I
had no idea what I was going to say, what I was going to do. And from there,
then we did another one for the people 50 and over. A discussion with the church,
the church that Charles is a member of, to you know, discuss with them what the
needs of people with HIV are, and what did we think they could do to help. And
their ministry is overflowing. It is so beautiful.

30. So, what do you think black women with HIV need, as someone who is with
the disease? What do you need? What do other black women need?

We need, oh wow, we need love. We need, well basically, like I said, we need, we
need to be able to build our skills as far as caring for ourselves again. It's hard to
think you're on top of the world and then all of a sudden, like a little, little child,
you know, you don’t know which way to go; how to stand up. You don’t know if
someone's going to, you know, put you down. So, we need the skill-building
training to let people know that it's never too late to learn a skill; to new ways to
health care; ways of eating healthier; ways of shopping. It's all around, just a
lifting environment to know that life doesn’t have to be the way that we make it if
we have better self-control. To learn different – to have a vision. That's the best
way I can explain it. To have goals and to say like, set up a time on the directions
that you're going to go in. and to see how far you've come and to never give up.

31. In terms of services, what kinds of services black women with HIV need? I
mean is it counseling? Is it housing? Is it employment? Is it therapy?

[Unintelligible] It's, it's basically all of them. Okay, like you said, a lot of them is
housing. Well, let me start from the beginning, first, counseling. You know to
help to set their goals; to meet them where they're at. To help them build. Okay,
from there, if it's needed, the mental, mental health. The abuse clinics, 'cause
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there's a lot of abuse. A lot of women think abuse is being beat up, but there are
other types of abuses that they're not even familiar with, and it's been going on a
long time. Child-rearing. A lot of us have lost our skills in it, and we got some
wild kids out here. And health care is basic is first and foremost. Learning better
health care.

32. In terms of what?

In terms of getting your mammograms, getting your pap smears, asking your
doctor for a HIV test. [unintelligible at 42:06] because we need to get doctors to
start doing it because [unintelligible at 42:09]. If you don’t ask, they don't do it.
They will not ask you. There are doctors in your private practices and what have
you, they still – because they're not HIV aware. It's all about money. The more
money you have –you know what I'm saying –the rich, okay, it's privately done.
We'll never know, maybe. But, with us, say, you go to, you still got your old
family doctor, you know, and it's private, if you don’t ask him, he's not going to
do it. They're still training them. Ask and find out. If it says, 'cause I know when
in our outreach, we go by different clinics and doctor' offices and stuff, or just
walk in and ask do they give them. A lot of them just say no and they want to
whisper.

33. I'm going to wrap this up with one last question to you… what advice do you
give to black women who are, who have not taken care of themselves, or
those who have and are running around. What's your advice?

You need to know what you're getting involved in, because HIV doesn't have a
name, and it doesn’t have a look, and it doesn't care who it gets. Well, I shouldn’t
say get; it doesn’t care who it infects. It doesn’t matter. You can be the smartest of
smart, the richest of rich, the poorest of poor. It doesn’t care. And what's done in
the dark does come to the light. It does. Always make sure. I wish I had a
billboard that said: Stay out of the dark. Get tested. I just made one up.
[unintelligible] I'm going to keep my vision. It will come.

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Appendix C: Transcript
Telephone interview with Stephen Simon, City of LA AIDS Coordinator
Date conducted: Thursday, January 12, 2012 at 2 p.m.

BACKGROUND

1. How long have you been an advocate for HIV prevention?
I’ve actually been the AIDS coordinator for eight years. I have been working in
HIV direct services or policy since 1994.

2. What drew you to this work?

Literally, I was sitting in my second-year law school class at UCLA (Go Bruins!),
and an attorney for AIDS Project Los Angeles came in and said that their clients
were dying so fast that they couldn’t finish their powers of attorney, their health
care directives and even their wills quickly enough before dying before they got
done, and they needed law clerks, and I thought it was a crazy, horrible thing to
do all summer long to be honest with you. And then about two days later, thinking
about it, I went into APLA to see what was happening, and basically never left. I
was a law clerk there when I passed the bar; a first-year student. When I
graduated and passed the bar I joined their legal department. I stayed there until
we founded a law firm called HALSA Legal Services Alliance and I went from
there to public policy; hired back by the AIDS Project Los Angeles to be the
Associate Director, did government affairs work and then came to this position.

3. What is the strategy for City of LA relating to HIV? Black Women?

In terms of strategy, the City always functions in relation to the County. We have
far fewer dollars that we have to make use of. The County has $80 million dollars.
Looking at HIV prevention, we have a two million total budget; one million
dollars that actually goes out to the street, so about a one million dollar budget for
services. Our strategy has historically been to find underserved communities or
try to give indigenous, community-based organizations the opportunity to try
prevention strategies and prevention programs that otherwise they would not get
funded by the County, state or federal government. So, we’ve put a lot of money
into needle exchange when 15, 16 years ago, when other local governments in
Southern California wouldn’t fund them at all. We have been criticized, including
my tenure here, of disproportionately funding women’s programs. It means were
told by several people publicly by all levels of government that the epidata says
we should be spending less money on women and more money on men and this
office, even when women were between 5% of the epidemic to about 12% of the
epidemic we funded anywhere from 15% and 20% of our funds directly targeting
women. If your argument is we’re going to wait until women become a higher
percentage of the epidemic to provide the services that are needed, then that
doesn’t make sense. So, our strategy has been to support smaller organizations
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usually, not always, to try to support innovative programs that might not be
funded elsewhere.

4. Can you give me some examples of those organizations that you’ve funded?

We fund an organization called the Center for Health Justice that goes into jails,
mostly LA County jails that works predominately with men and women of color
to do HIV prevention work, some of it, indirectly because they do transition work
for people coming out of jail to get them hooked up with social services; linked to
care if they’re positive. We support that program for many years on and off.

We, in the past, not in this last round, but in Women Alive, is a very small
community based organization that provides an array of services for women who
are living with HIV predominately, it’s more of prevention for positives. We
funded that organization for six of the eight years that I was here.

Those are the two that focus most closely. The disproportionate number of
African-American women is served by our testing program at both Planned
Parenthood and the LA Free Clinic; our syringe exchanges; homeless health care
(downtown).

We fund mini-grants usually grants $1,000 to $3,000 for community education
programs, but I’ve recently changed that only for capacity building and we have
funded everything from the National Council of Black Women; Women Alive…

We do a small research grant every year that’s $50,000, which really isn’t
considered much in the world of research, in those grants, we’ve looked
at…we’ve probably done about three studies in the last 15 years that were
explicitly targeting African American women. One I believe was a domestic
abuse one.

ABOUT BLACK WOMEN & HIV
5. The statistics for black women contracting HIV is sky rocketing. A leading
cause of death of black women 25-34 is HIV/AIDS. In your opinion, what is
contributing to these infection rates (what factors)?

There are a lot of things contributing. The cultural issues that are facing black
women between racism and sexism that still exist institutionally; much higher
poverty rates than many communities; the lack of access to consistent quality
medical care…culturally competent medical care and medical care that
understands HIV and looks for HIV. I can only say this anecdotally because I
don’t have a data sheet somewhere, but I will guarantee you, with black women,
maybe with Latinas, are among the people who get diagnosed latest in their
disease prevention. They’ll go in and say they’re sick and no one will take a HIV
test, so they find out [their HIV status] later when they’re sicker and harder to
treat. Again, that’s a consequence of unequal medical care system.
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What I don’t think is a much of a primary cause is this obsession with the Down
Low situation. I don’t think those men who are gay and hiding that they are gay is
any more prevalent in the black community than it is in other racial community.
There’s no data to support that. We talk a lot about it in the black community, but
it’s happening across the board, race wise.

It exists [Down Low men], and we certainly need to talk about it. There’s an
indirect issue of homophobia that exists across races, it’s a little stronger in black
and Latino communities…but it is pertaining to men who sleep with men secretly
and want to stay under the protection of their church and family structures and
don’t want to disclose. There is certainly a risk, but the notion that it is so much
worse in the black community than anywhere else is, again, is where I refute

Jail…incarceration definitely we have a wildly disproportionate number of black
men who are incarcerated. I think the problem is, again is the data, there are
people who argue that there isn’t a significantly higher number of people in local
jails with HIV….it seems that in federal jails, as seen in states like Mississippi
that have really thorough studies and places like San Francisco, it just really
hasn’t been looked at thoroughly here in LA…I do think they are contracting HIV
in prison and coming back to their communities and infecting female partners.

All those are factors…if you asked me this five years ago, I would have said a
lack of education from the general public among black women, particularly in the
case on how to protect yourself from HIV, I don’t believe that so much anymore.
I do believe people have access from school age to the basics of HIV and how one
acquires it.

6. So what do you think is happening? I talked to Marylyn and others about the
notion of denial and them not realizing they are part of the highest risk
group. What do you say to that?

“I don’t know,” that’s what they used to say now…..it’s 10 years of HIV
education, since middle school, it gets down to, “I’m about to have sex with
somebody and I could choose to use a condom or can they use one?” or
whichever way the conversation is going to happen and then we don’t do it [use a
condom]. We don’t do what we’ve been taught to do from formal education and
part of it is just the denial of risk: “Well…it’s not going to happen to me” ….”He
doesn’t look that way.” It’s the kind of decisions we make, but and it’s not the
way to look at it. It’s you want to take a risk, I’m about to have sex without a
condom…you’re putting yourself at risk for HIV – period. Know that. End of
discussion. It’s your choice.

Psychologists will tell you that because of the disproportionate number of women
to men in the black community – eligible male partners and socio-economic
disadvantage – that they essentially argue that black women are more – and I
don’t use this word to be intentionally to be inflammatory – black women are
more desperate to find a man and therefore will not do anything to push him away
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when you could just say “Hey, wear a condom”. I have that anecdotally from
individuals, so when someone tells me that’s her personal journey of course I
believe that, I have trouble putting that on black women any more than anybody
else. In general, I think we are a society that believes we’re not gonna get it; I can
sort people by looking at them, and when it comes down to it, I want to be loved
and cared for and have sex when I want to and a condom gets in the way…the
prevention across the board in the United States of America has horribly failed at
getting people to change that behavior and we talk about getting people to wear
condoms, but people don’t and we don’t seem to change our paradigm.

7. What do you think needs to be done to help black women reduce those
numbers?

I think there needs to be a black women-centered social movement to make them
change. I am getting tired of people like me or researchers across the board telling
women that we are gonna empower you because it presumes that men have the
power empower women. I just don’t think it’s about general education anymore
it’s the kind of peer pressure internally we need in our communities to say: look –
if we are going to keep ourselves healthy we have to have group support each
other…say to your friends “You need to wear a condom with this guy” talk about
it openly…Black folk don’t talk openly about sex as much as other communities.
We have to talk about sex openly and use peer pressure among youth to make it
un-cool to not use a condom. We need to be having those kinds of conversations,
and not doing things like saying our school district shouldn’t be teaching our kids
about sex because it’s our job as parents when parents have been dismal failures
at that too. All that said, I don’t think there is some institutional work that needs
to be done, but there needs to be support made available. Maybe it’s funding to
facilitate women coming together to literally just talk to other women around “this
is what we need to do…” without being judgmental, without pointing fingers and
make that change. I know it sounds nebulous, but for all of the billions of dollars
that have gone into HIV prevention we don’t see people using condoms a whole
lot more than they used to. The younger generation is good at that. People 45+ are
not good at it.

8. You said the younger generation is better at it [wearing condoms] but the
numbers for young black men, the numbers for black men 13-29, the HIV is
rising. So..

Self-reported condom use is higher among older people.

 What are your suspicions why older folks, the baby boomers aren’t
using condoms?

Baby boomers saw the epidemic at its worst

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CAMPAIGNS
9. Within the last three years (2009), how many marketing campaigns geared
exclusively toward AA women has City of LA been involved in singularly or
in partnership?
a. "Get Tested"

10. What had been the city’s most successful strategies for educating AA women
about how to protect themselves from HIV, women specifically?

Peer-based. Black women talking to black women I think would make all of the
difference in the world. If I had one choice on putting money into one type of
intervention, it would be predominately care-based work where women are
funded and given tools that share a much broader number.

11. Explain your involvement with Grace United Methodist Church HIV/AIDS
ministry. Have faith-based organizations made a difference? Could they?

The potential of the faith community broadly, to impact black women is huge.
The faith community within the black community is very powerful…I would love
to support comprehensive HIV education organizing through the black church.
It’s mixed bag though. I will not spend my money on abstinence only program – it
doesn’t work. Women won’t participate, and frankly, nationally we are seeing
numbers of higher pregnancy rates with people in abstinence only programs. But,
with abstinence part of a comprehensive range of prevention alternatives of
course [I’d fund it]. Some fantasy where you’re trying to get the majority of
women to not have sex until they are married or until their mid-twenties – it
doesn’t happen. You can’t just say “too bad”…I don’t want to beat up the church,
there are some pastors who go that route, who still point their fingers and preach
fire and brimstone – it’s just not realistic. I think church being faith-based where
women discuss sex and sexuality and be honest with what they are feeling and let
them know that they can protect themselves. But saying – this church wants to
protect you, the community wants to protect you, this church cares for people, we
are going to make condoms available. We don’t think you should be having sex
until you feel that you are adult enough to make that decision, so we want to give
you an opportunity wait, but we want to make sure you have a condom when you
walk out the door. So, if you ever slip up, we want to make sure you have a
condom so you can protect yourself. That kind of moralizing is a very fine line.
It’s a slippery slope.

a. In your opinion, do you see the church as more of a help or a
hindrance to HIV prevention?

It’s slowly changing and shifting. I think we are at the tipping point now
where the black church across the board is becoming more of a help than a
hindrance.

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12. What resources in the City of LA do AA women have re: HIV?
The city has been hit with a 20% cut to our prevention dollars…research projects
for direct prevention is about $1 million dollars, there’s $50k that goes into mini
grants are all of our resources around HIV prevention. The only other tool we
have is the mayor and the city council to speak out against HIV/AIDS.

I am a policy person, so I spend most of my time at the County, in Sacramento
and Washington trying to get laws changed and policies changed, and I honestly
think that’s where we are making more of a difference. We’ve made a huge
turnaround around HIV testing policy protocol, availability, vaccines and testing
in federal prisons took years and some time to pass it, but we support that kind of
work. I am a big supporter of test and treat. We don’t test most people and it’s not
an unreasonable thing to ask. The cost of medical care to treat some of these
people…if you test most people and find out some of the positives…When people
find out their positive, more often than not, unquestionably they alter their
behavior. They disclose more, they use condoms more themselves. Most people
don’t want to infect somebody else once they know. I am a big supporter of
expanding testing availability.

13. What’s the mayor’s position on HIV?

The mayor has a history of being very good about HIV. He has been supportive
of this office generally. He asked him to call for raise awareness about testing
regardless of sexual orientation, race, etc. he’s been visible. The city budget is so
bad. To see whether the mayor’s stance on HIV is excellent is whether he makes
sure this office does not leave.

14. What are the numbers for LA?

The numbers across the county are about 60,000 people are living with HIV and
more than ½ living with HIV…

15. Are there hot spots? Higher prevalence rates?

The problem has been tracking those numbers cleanly to get the data on infection
rates. The county has a beautiful ability to map what those hot spots look like.

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Appendix D: Transcript
Interview with Marvelyn Brown, author The Naked Truth: Young, Beautiful and
(HIV) Positive. Date conducted: Wednesday, January 11, 2012 at 7 a.m.

Questions

1. How old are you now? 27. I was diagnosed at 19

2. Before your infection, did you ever know about HIV? Did you see any
messages, billboards or campaigns about testing or knowing your status?

I had heard about HIV, but I never truly cared about the virus.

a. Why didn’t you care?

I didn’t think it was an issue of mine.

3. In your book, you talk about HIV/AIDS being about gay, white men. Why?

Back in 2003. I felt HIV/AIDS was about gay, white men when I was growing up.

4. What factors do you think would have

I believe having more information out there that I could happen to me. That it was
my issue. My disease.

5. Page 71 - Prince Charming was your ideal guy. You talk frankly about how
you interpreted him telling you that he didn’t have a condom as love and
then you go on to say that the “worst thing to happen is a baby”

a. Why not wearing a condom seen as love?

I felt it meant that he could trust me.

6. Were you aware that AA women had the highest rate of HIV?

No, I wasn’t. I’m not sure if that was the statistic back then because I have been
positive now going on nine years. I was not aware.

7. Medication? How many pills do you take a day?

I take seven pills a day.

8. Why do you think black women are getting the virus at higher rates?

I think there is a lot of misinformation out there. One – we are becoming infected
because we didn’t know this was an issue of ours. Two – we are caregivers, and
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often times, we’re worried about everybody else, but us. I think as black women
we have to be more responsible for ourselves and putting ourselves first.

9. Read your blog and found that you are dating. How soon do you disclose
your HIV status?

Right away. They are aware right away.

a. What has the reaction been to you when you disclose your status?

It depends. I’ve had good reactions, bad reactions and some are just weird.

10. How soon do you think other people should disclose?

It’s solely on that person. I tell people in the first conversation because I don’t any
feelings to be there between me and that person before I tell them. Some people
feel that they want a person to know them before they tell them. You know, let me
get to know them as a person. Maybe, once they get to know me, they don’t care
that I’m positive. It depends on the person. I never tell a person when or when not
to disclose because you never know what that person may be going through, but I
do think a person deserves to make that choice whether or not to be with you
sexually if you are positive.

11. Today, what is your advice to women about HIV?

I would tell women to love themselves enough to protect themselves. If you love
yourself, then you care about your health and your well-being.

12. Do you think the lack of love for self is why black women are more likely to
get the disease?

I wouldn’t say that either because there are a lot of other factors in there, I
definitely wouldn’t say that that’s solely the reason because it’s not. It’s other
things that play a part in black women becoming infected.

13. Like what?
Shares her discomfort with answering this part of the question because she feels
“unqualified” to talk about it.

14. What’s your future look like. What do you hope to be doing with your
prevention message in the future?

I really feel like I am doing something that I was chosen to do, not something that
I necessarily want to be doing. I definitely enjoy helping other people, but this
was God, you know, passed through me. And, I always wanted to start a family;
be married with kids, like that’s what I truly want to doing in the future. As far as
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my prevention message, I have never had goals within it because I was just only
doing what was already destined for me to do, so I really don’t, truly know what I
would be doing, because I just follow God. Like, I didn’t ask for anything. I
didn’t ask to write the book, but when I tell you He [God] put me in the hotel
room with someone who could make it happen, it was just like that. The day
before I had no idea I was writing a book. It’s really been situations like that for
me. Someone asked me to do a PSA – absolutely. Who would have thought that I
would have gotten an Emmy for it? I didn’t even know you could get an Emmy
for it! I’m slowly doing what God has chosen for me to do. I would like to
imagine that it can only get better from here.

15. What is your prevention message?

My three messages that I always leave with people is: to get tested, to get
educated and be responsible. Those are always my key messages because I make
my living traveling around colleges and universities and I tell my personal story
and I intertwine those three messages with my personal story.

16. What’s the feedback been like when you go to campuses and you talk to
students?

The feedback is actually very overwhelming. It’s unreal. Sometimes it just does
not feel real. I mean because growing up, I just was not responsible. I was very
selfish. I was constantly being told what I couldn’t do; feeling unworthy of certain
things and then when I found out that I was HIV positive they just threw in the
towel. So to go somewhere and know that my story, my testimony can change
people and the reaction they have to me…like I’m a hero, like I hear so many
different things, it’s a hard pill to swallow because back in mind, I’m still the girl
who was not supposed to be anything….I’m being real, I’m being honest with
people and people are responding to that.

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Appendix E: Transcript
Telephone interview with Phil Wilson, CEO/Founder, Black AIDS Institute
Date conducted: Monday, January 9, 2012 at 1 p.m.

BACKGROUND

1. How long have you been an advocate for HIV prevention? Executive
Director?

I’ve been involved in the epidemic since the very beginning, since 1982 in
various ways. I’ve worked in government. I have worked in various nonprofit
capacities as well.

2. What drew you to this work?
I think for me, many, probably most, who got involved in the very, very early
days it was personal. I knew people who died very early. It was clear to me
that we had to get involved in fighting this disease and the government was
not responding. The incident that catapulted me to do this fulltime was
Lyndon LaRouche put an initiative on the California ballot, I believe in 1985.
That initiative would have quarantined people who were HIV positive. It was
at that point that I decided that this should be a full-time endeavor.

Broadly though, the LaRouche, quarantine initiative was the catalyst, but the
issue, I think, was stigma and realizing that stigma was, and continues, to
undermine our efforts to address HIV and AIDS in black communities. What
we discovered as a result of building a strategy to fight the AIDS quarantine
initiative is we discovered for the first time that Black people where
disproportionately impacted by HIV. Up until that point, the public
commentary about HIV was that it was a white gay disease. The truth of the
matter is it was never just a white gay disease. Globally, it is primarily a
heterosexual disease even though that’s not the way it necessarily manifests
itself in this country.

Globally, today, even in this country, AIDS is a black disease.

3. What were your initial hopes and aspirations when you joined the battle
against HIV/AIDS?

In the beginning, our hopes and aspirations were that we would not die, that
our friends would not die. We were fighting to stay alive.

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ABOUT BLACK WOMEN & HIV
4. The statistics for black women contracting HIV is sky rocketing. A
leading cause of death of black women 21-34 is HIV/AIDS. In your
opinion, what is contributing to these infection rates (what factors)?

There are a few things I would say. Number #1 - we have made some
progress. AIDS is no longer “the” leading cause of death for black women 21-
34 – it is a cause of death, so there have been some improvements. The reason
why black women are disproportionately impacted is because black people are
disproportionately impacted. Black Americans represent 12 to 13% of the US
population and we are around 50% of the new HIV/AIDS cases in this
country. We are around 50% of the estimated 1.2 million Americans living
with HIV, and we’re around 50% of the annual AIDS-related deaths, and so
Black women are at risk because black people are at risk and black people are
at risk for a number of reasons:

Number #1 – As a community, we were slow to respond to the AIDS
epidemic, and we are dealing with the legacy of that slow response as a result,
the epidemic had a chance to get ahead of us. The virus had a chance to get
ahead of us, so we are chasing the virus for 20+ years.

Number #2 – We still do not have the infrastructure and capacity in black
communities to appropriately respond to the epidemic.

Number #3 – there continues to be stigma that creates an environment of
denial. One of the major reasons why black women are at risk is because we
are not having the appropriate, graphic, explicit conversations among black
women, with black women, about HIV. We created an environment, where
because of the stigma, black women are in denial about their risk even when
they know their risk they are often in denial about their risk.

I think there are also socio-economic and structural factors that negatively
impact black women’s risk to HIV. Economic, of course, the percentage of
black women below the poverty line; and the gender gap that exists within
black communities, black women outnumber available/eligible black men that
foster an environment in which people are not engaged in monogamous
relationships. Sometimes [black women] they explicitly know. Sometimes
they implicitly know and sometimes they don’t know, but the notion that non-
monogamous experiences exacerbate the epidemic in black communities.

Finally, black people are slow to get into HIV care. HIV/AIDS health
disparities between blacks and other racial-ethnic groups are greater today
than they were 15 years ago. We know that when people are in HIV care and
their virus is suppressed they are less likely to transmit the virus than when
they are not in care or when their virus is not suppressed.

102

5. Why do you think blacks have been slow to respond?

I think in the beginning, we received information that suggested that it was not
our problem. The public message was that AIDS was about white, gay men.
And that did two things: it was not our problem and we had a lot of other
things that were impacting us that we had a full plate, even without HIV –
there’s poverty in black communities, there’s unemployment in black
communities. We are disproportionately impacted by other diseases as well.
There’s violence, there’s teen pregnancy, so we had a full plate.

I think secondly, because the disease was mischaracterized in the beginning,
that created an environment where stigma rules the day and so not only was it
not our problem, but we didn’t want to be associated with the problem, and
often we were more concerned, I think this continues to be the case today, we
were more concerned about the stigma than we were about the disease.

6. What do you think needs to be done to help reduce the number of
infections among black women?

There is no silver bullet, but I think there are things that we can do, and quite
frankly I think we have the tools to end this epidemic in black communities
today. The question is no longer can we end the AIDS epidemic? The question
is will we end the AID epidemic? The question is no longer do we have the
tools to end the epidemic, but will we use those tools efficiently, effectively
and compassionately? So what do we need to do?

Number #1 - We need to do a better job of diagnosing the disease earlier, and
we have the tools to do that. HIV testing in California has never been easier.
Finding out your HIV status has never been easier and never been more
important. In most cities, you can get free HIV tests, so cost should not be a
barrier. The test is easy and painless. You can get tests that don’t require
blood, that don’t require needless, so that should not be a problem. You can
get results back fast, in less than an hour, so waiting should not be a problem.
The tests are confidential, so that should not be a problem. So we have all of
these tools to make getting that information about your HIV status easier, so
we have to do a better job at getting people diagnosed earlier.

Number #2 – We need to do a better job of surveillance and we have tools for
that. We know where the hot spots of the epidemic are and sometimes we can
zero down to the zip codes, or the census tracks. We know where what
communities have the greatest community viral burden, so we can address
that.

Number #3 – We need to get people into treatment. A disproportionately high
number of black Americans are not in treatment. 1 out of 5 Americans who
are HIV positive are not in treatment. We need to get people into treatment,
and again, we’ve made tremendous advances. The treatments are easier.
103

They’re more effective. They’re less toxic. There are fewer side effects and
the cost has gone down on the treatment, so we need to get people into
treatment.

Number #4 – We know how what is necessary to prevent acquisition of the
disease. In 2010, we found that we can prevent acquisition through vaginal
microbicides and Pre-Exposure Prophylaxis, so we have a better
understanding on how to prevent acquisition.

Finally, number #5, we need to address preventing transmission, and we can
do that with the concept of treatment as prevention. Reducing viral loads,
suppressing viral loads dramatically reduces the likelihood that someone can
transmit the virus to another person, so we have those tools.

In black communities, I think what we need to do is continue mobilization
communities. We need to raise the HIV science literacy in black communities.
We need to raise the volume of the HIV discourse, so that all of our
institutions, whether they are civil rights organizations or women’s
organizations, or black media organizations or black elected officials or black
academic institutions, black businesses; that all of institutions that serve black
communities are engaged in this fight.

7. What has your experience been like with the churches?

I think churches, in some cases, are responding to the epidemic. I think we
still have work to do in black churches, as we do in all populations. I think
there is an important role for black churches to play, and there are important
roles that many black churches are playing.

CAMPAIGNS
8. Within the last three years (2009), how many campaigns locally and
statewide has your organization been involved in exclusively toward AA
women? It would be interesting to see what some of the messages have
been to date how I might analyze.

Basically, we have involved in three social marketing campaigns over the last
10 years.

One was our “Got AIDS” campaign, which was a college-based campaign that
was about HIV testing among college students in 2003 or 2004. It was a
campaign were college students were mobilizing, primarily at Historically
Black Colleges to do HIV testing on their campus through our college
program; our Life AIDs program.

104

The second one was our “Test One Million” (2006), and that campaign was
really about testing one million black Americans and again, it was a
mobilization and awareness campaign. All of our campaigns are national.

The current campaign is our “Greater than AIDS” in partnership with the
Kaiser Family Foundation. That is the first ever national campaign targeting
black Americans and we are in 34 markets around the country. It is a
multiplatform campaign: outdoor, print, radio, television, cable, internet; a full
multimedia campaign targeting black communities with segmented into
subsets of the black communities targeting gay & bisexual men, targeting
women, targeting youth, etc.

9. With classification of black MSM, do you see that has a factor as why
black women’s HIV rates are increasing?

Black MSM are a less likely to call themselves gay or bisexual. That does not
mean that they are identifying their sexual behavior, they just may be not
using those works. I think that, that’s important.

It is also true that sexuality among black men tends to be a little more fluid
than it is with white MSM, meaning that, they are more likely to be sexually
active with women for a longer period of time that their white counterparts.
Their sexuality is likely to be more fluid than among white men this is often
attributed to the fact that black men are less likely to live in white gay ghettos.
So, if you live in los Angeles and you’re a black gay man, you are more likely
to stay in a predominately black community than you are to move to West
Hollywood. If you live in Chicago, you are more likely to live on the
Southside than you are to live in New Town. If you live in Washington, D.C.
you’re likely to live in South East than you are to live in Dupont Circle, so
that’s one of the factors.

But the issue, quite frankly, for black women, is less about what their partners
are doing and more about what they are doing to protect themselves. There is
no indication that there is or has [been] or increased coercive sexual contact in
black communities than there are in other communities, so women are
knowingly engaging in risky sexual behaviors with their male partners either
not knowing their HIV status or not knowing their sexual history, and so the
answer to reducing the risk for black women is for us to do a much, much
better job in helping them [black women] know their partners’ HIV status,
know their partners sexual history and protecting themselves regardless of the
information they are getting from their partners.

10. In terms of your campaigns in 2004, 2006 and 2011, what are your
objectives? What are you looking to accomplish?

Our goal is tied back to the Black AIDS Institutes mission, and that is to end
the epidemic in black communities by engaging and mobilizing traditional
105

black institutions, leaders, individuals in an effort to confront HIV/AIDS. All
of our social marketing campaigns are designed around building a national,
mass black movement to confront HIV.

11. What have been the most successful strategies for educating people about
how to protect themselves from HIV, women specifically?

I think the most successful strategy has been getting the black community to
take ownership. To make sure we are changing who the messengers are – the
messengers matter the message matters. We are certainly not where we need
to be, but we are a long, long way from where we were in 1982 or 1996. Black
communities are engaged. Black churches are engaged. Black media
organizations are engaged. Eight years ago, not a single major national black
organization in America had a national HIV plan. Now, most of the major
black national organizations in the country have a plan. 16 of the largest black
national organizations not only have a plan, but they have a national HIV
coordinator. That’s progress. Today, when you read black newspapers, black
magazines or you go to black websites, the vast majority of them are covering
HIV as one of the topics that are important to the work that they do. This last
year when Ebony magazine listed their most influential African
Americans…when Essence magazine listed their most influential African
Americans, they included folks who are working in HIV and AIDS.

12. Give me some examples of the 16 largest black serving institutions:

NACCP, Urban League, National Council of Negro Women, The National
Coalition of 100 Black Women, the National Newspaper Association, Urban
Radio Network, The Congressional Caucus Foundation, The National Action
Network, are all among those organizations.

13. I found an excerpt from AIDS.gov where you stated:

“I used to say that I didn’t believe that I would live to see the end of this
epidemic. I don’t say that anymore. I believe that it is entirely possible that I
will see the end of this epidemic, but we are at one of those deciding
moments. Whether we end it now or not is totally up to us.” – Phil Wilson

a. Do you still feel that way?

Absolutely – yes I do.

106

Appendix F: Online Survey Questions

1. Have you seen any of these messages from HIV prevention campaigns? Click all
that you remember:

 “Rap-it-Up” (BET campaign)
 “Is HIV in You?” (LA County 2011 – Erase Doubt campaign)
 “Take Charge. Take the Test” (Act Against AIDS national campaign
2011)
 “I Know” (Act Against AIDS 2010)
 “Greater than AIDS” (LA County + partners)

2. How would you describe your own approach to learning about safe sex
practices?

1 - I don’t actively seek information 5 - I very actively seek information

3. From what sources do you obtain information about safe sex practices?
 Friends
 Family
 The media (TV, newspapers, radio)
 My physician
 Online (blogs, websites). Which ones?_____________________________

4. Which do you consider to be the most credible source for information about HIV
prevention? Rank these from 1 (totally not credible) to 5 (totally credible)?
 Church
 Your physician
 Friends
 Family
 Surgeon General
 The media (TV, newspapers, radio)
 Online (blogs, websites) Which ones?_____________________________

5. Please rank order the groups according to the ones you believe are at the highest
risk for HIV infection:
 Black Teenagers
 White Teenagers
 Black heterosexual women
 White heterosexual women
 Black gay men
 White gay men
 Black heterosexual men
 White heterosexual men

107

6. Please rank order the following factors according to their degree of risk to
African-American women, with 1 being the greatest risk
 Unplanned pregnancy
 Heart disease
 Obesity
 HIV/AIDS
 Domestic violence

7. How would you describe your own attitude toward having sex without using a
condom?

 I would not have sex without a condom under any circumstances
 I would have sex without a condom under some circumstances
 I would have sex without a condom under any circumstances

7b. If you answered B to the preceding question, under what
circumstances would you have sex without a condom? Rank in order of what
is acceptable:
 Being “truly in love”
 Knowing for sure that my partner does not have HIV or other STDs
 Being in a long-term, monogamous relationship
 My partner doesn’t like using condoms
 No condoms were available
 All of these situations are acceptable
 Other: Please specify__________________

8. At what age should people first be educated about HIV/AIDS and avoiding
sexually transmitted diseases?
 Elementary school (ages 5-10)
 Middle school (ages 10-14)
 High school (ages 14-18)
 College (18+)
 The topic of HIV and STDs is too sensitive to be discussed at any age

9. At what age can you recall when you were first learned about HIV/AIDS?
 Elementary school (ages 5-10)
 Middle school (ages 10-14)
 High school (ages 14-18)
 College (18+)
 I was never taught about HIV/AIDS

10. What would you consider to be the worst-case outcome when a condom is not
used during sex? Please rank order, with 1 representing what you view as the
“worst outcome”:
 An unplanned pregnancy
 Having feelings of guilt or regret
 Contracting a STD or HIV/AIDS
108

 Being rejected by my partner
 Other (please name)

11. What would motivate you most to use a condom during sex?
 Fear of an unwanted pregnancy
 Knowing someone personally who contracted a STD/HIV
 Fear of contracting a STD (HIV, Chlamydia, etc.)
 If condoms felt more “natural” (felt the same as without a condom)

12. What’s the best source to educate people about HIV/AIDS and STDs? Please
rank from 1 (not the best source) to 5 (the best source):
 Family
 Friends
 School
 Church
 Doctor
 The media (TV, newspapers, radio)
 People should learn about HIV/AIDS and STDs on their own
 Online (websites, blogs)
 If you said online, please name specific online sources of information

13. When I am sexually active, my partner and I use condoms:
 Sometimes
 All the time
 I don’t use condoms

14. If you wanted to encourage a friend who wasn't regularly using condoms to do
so, what would you say?
 “So, you’re not using condoms because you’re planning on having a baby
or you’re trying to catch a STD?
 “You may know this guy, but do you know him well enough not to use a
condom?”
 “You only have one body, so if you slip up and get a disease from not
wearing a condom, then what?”
 What would you say? Please explain____________________________

15. Check all that apply, the main reasons I don’t use condoms is:
 I use another method of birth control (i.e. the pill, patch, ring, IUD)
 I prefer the withdrawal (“pull-out”) method
 I’m not that fertile
 I’m in a monogamous relationship
 I know my partner’s sexual history
 Condoms reduce intimacy (I don’t like how it feels)
 I don’t have a condom available
 My partner would be offended if I asked them to use a condom
 I prefer not to use condoms
 My partner prefers not to use condoms
109

 I just don’t think about using condoms during sex
 Other. Please specify______________________

16. I know my STD and HIV/AIDS status:
 I think so
 Absolutely, I was recently tested and I know for sure
 No
 I don’t want to know

17. I was tested for HIV/STDs:
 0-4 months ago
 5-10 months ago
 Over one year ago
 Over two or more years
 I have never been tested for HIV

18. What is your ethnicity?
 Asian
 African-American
 Latino
 White
 Other:____________________

19. What is your age?
 16 – 20
 21 – 25
 26 – 35
 36 – 45
 46 – 60
 61+

20. What is your total household income? Select one.
 Less than 10,000
 $10,000 - $19,999
 $20,000 - $29,999
 $30,000 - $39,999
 $40,000 - $49,999
 $50,000 - $59,000
 $60,000+

21. What is your current marital status?
 Single (never married)
 Married
 In a monogamous relationship
 Divorced
 Widowed
 It’s complicated
110

22. What is your religious affiliation?
 Protestant Christian
 Roman Catholic
 Evangelical Christian
 Jewish
 Muslim
 Buddhist
 Other. Please explain:________________________

23. What is the highest level of education you’ve completed?
 High school graduate or GED
 Some college credit
 Associate degree
 Bachelor's degree
 Master's degree
 Professional degree
 Doctorate degree

24. What is your current employment status?
 Self-employed
 A Student
 Full-time
 Part-time
 Retired
 Unable to work
 A homemaker
 Out of working and looking for a job

# # #

Abstract (if available)

Abstract On June 5, 1981, the first cases of AIDS were reported in the Centers for Disease Control & Prevention‘s Morbidity and Mortality Report . Today, approximately 50,000 Americans become infected with HIV annually, and 16,000 people with AIDS died in 2008, according to the Centers for Disease Control and Prevention (CDC). As a result, nearly 1.2 million Americans are living with HIV, and that number continues to grow. While HIV/AIDS has been a national epidemic, African Americans carry the largest burden of the disease. ❧ The new face of HIV/AIDS has shifted from gay white males in the 1980’s to African Americans in the new Millennium. Looking at the current state of affairs, black women are particularly at higher risk with astounding HIV infection rates. A careful examination of the factors, including psychological, societal, economical and behavioral, that contribute to the increase of HIV infection rates among black women is the subject of this research. Along with the findings, the author provides recommendations on how strategic communications can be used to help in the fight against HIV/AIDS among black women.

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Asset Metadata

Creator Walker, Miya A. (author)

Core Title Communications and messaging strategies to encourage African-American women to practice safer sex/HIV prevention measures

School Annenberg School for Communication

Degree Master of Arts

Degree Program Strategic Public Relations

Publication Date 05/09/2012

Defense Date 05/08/2012

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

Tag African-American women,communication strategies,HIV/AIDS,low-income,OAI-PMH Harvest

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Swerling, Jerry (committee chair), Jackson, Laura Min (committee member), LeVeque, Mathew (committee member)

Creator Email miyawalk@usc.edu,miyawalker@gmail.com

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c3-37233

Unique identifier UC11288310

Identifier usctheses-c3-37233 (legacy record id)

Legacy Identifier etd-WalkerMiya-820.pdf

Dmrecord 37233

Document Type Thesis

Rights Walker, Miya A.

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 a...

Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus MC 2810, 3434 South Grand Avenue, 2nd Floor, Los Angeles, California 90089-2810, USA