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Changing HIV testing antibody technology and prevention policy

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Changing HIV testing antibody technology and prevention policy examining the implications for stemming transmission among populations at greatest risk
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Nearing, Kathryn Allen
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English
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xvii, 196 leaves : ; 28 cm

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Subjects / Keywords:
AIDS (Disease) -- Prevention ( lcsh )
AIDS (Disease) -- Government policy -- United States ( lcsh )
AIDS (Disease) -- Government policy ( fast )
AIDS (Disease) -- Prevention ( fast )
United States ( fast )
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bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

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Bibliography:
Includes bibliographical references (leaves 186-196).
General Note:
Department of Health and Behavioral Sciences
Statement of Responsibility:
by Kathryn Allen Nearing.

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|University of Colorado Denver
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ocn437368963
Classification:
LD1193.L566 2009d N32 ( lcc )

Full Text
CHANGING HIV ANTIBODY TESTING TECHNOLOGY
AND PREVENTION POLICY:
EXAMINING THE IMPLICATIONS FOR STEMMING TRANSMISSION AMONG
POPULATIONS AT GREATEST RISK
by
Kathryn Allen Nearing
B.A., Guilford College, 1994
M.A., University of Colorado at Denver, 1998
A thesis submitted to the
University of Colorado Denver
in partial fulfillment
of the requirements for the degree of
Doctor of Philosophy
Health and Behavioral Sciences
2009


Nearing, Kathryn A. (Ph.D., Health and Behavioral Sciences)
Changing HIV Antibody Testing Technology and Prevention Policy: Examining the
Implications for Stemming Transmission among Populations at Greatest Risk
Thesis directed by Associate Professor John A. Brett
ABSTRACT
This thesis examined the rationale and evidence base for changes in HIV prevention policy
coming out of the CDC and the degree to which the underlying rationale for such policy
changes were supported by the on-the-ground experience of professionals conducting HI V
prevention efforts in a variety of settings serving populations at greatest risk. While CDC has
focused its policy making and funding on prevention for positives, the thesis looked at the
implications of recent shifts in public policy for populations at greatest risk. Structural
violence provided the overarching conceptual framework for this research. Specifically, the
thesis deconstructed CDCs revised guidelines for HIV testing in health care settings to
explicate the ways in which public policies, when not grounded in evidence-based science,
serve to intensify structural violence the social, political and economic conditions that
increase risk for HIV among disenfranchised populations who are already vulnerable to
prejudice, racism, and other forms of discrimination. As such, the thesis was intended to
illuminate the ways in which lack of evidence-based policy making can institutionalize such
racism and prejudice. The thesis highlighted, for example, the rhetoric that questioned the
effectiveness of prevention counseling but failed to acknowledge that individual-based
counseling is stymied by the structural conditions that exacerbate HIV risk conditions
largely created by federal policies such as those that defund or under fund community-based
organizations that distribute condoms or make it illegal to distribute clean works.1 The
researcher's sincere hope is that this body of work will expose the social injustice inherent in
such policies and lead to enhanced scrutiny and public accountability.
This abstract accurately represents the content of the candidates thesis. I recommend its
publication.
Signed
John A. Brett
1 Words or phrases that are defined in the glossary are underlined the first time the) are used. The
glossary follows the reference section of this document.


This thesis for the Doctor of Philosophy
degree by
Kathryn Allen Nearing
has been approved
by
Date


DF DICATION
This thesis is dedicated to my mother who made numerous sacrifices, including
sacrificing her own educational goals, to provide for me and my brother. Her love for
learning, and commitment to nurturing that same love in us, fueled my educational
aspirations from an early age. Further, the values she instilled in us to use our lives
and talents to make a contribution to society shaped the topic I chose to pursue with
the thesis and the passion that infuses these pages. Thank you, Mom, for all you have
given me and done for me to make this dream a reality.
This thesis is also dedicated to my children: may you always finish what you start! I
love you!


TABLE OF CONTENTS
Figures................................................................................vii
Tables................................................................................viii
Introduction............................................................................ix
Section I: Background and Significance
Chapter 1: Technological Innovations in HIV Testing: Implications for the Uptake of
Testing among Populations at Greatest Risk..................................1-11
Chapter 2: Structural Violence: A Theoretical Framework.....................12- 32
Chapter 3: The Resurgence of the HIV/AIDS Epidemic: The Epidemiological
Context of Rapid HIV Testing...........................................33-55
Chapter 4: How Sound is CDCs Response to a Changing Epidemic? A Look at the
Evidence...............................................................56-82
Section II: Research Design and Methods
Chapter 5: Research Design and Methods.......................................83-96
Section III: Findings
Chapter 6: Local HIV Prevention Practice: The Experience of Health Care Settings
Attempting to Implement CDCs Revised Guidelines....................97-130
Chapter 7: Local HIV Prevention Practice: The Important Role of Community-Based
Organizations in Stemming Transmission among Populations at Greatest
Risk.................................................................131-142
Section IV: Conclusions and Recommendations..............................143-145
Glossary of Key Terms....................................................146-149
Appendices...............................................................150-185
References...............................................................186-196
v


Appendices
Appendix A: Human Subjects Protocol and Amendments...................150-160
Appendix B: Key Informant Interview Guide............................161-165
Appendix C: Informed Consent Form.....................................166-170
Appendix D: Transcriptionist Confidentiality Agreement................171-172
Appendix E: Document Summary Review Form..............................173-179
Appendix F: Emergency Department-based HIV Testing Programs
(National Overview)...................................................180-185
vi


LIST OF FIGURES
Social-Ecological Framework........................................................27
Relationship Between Policy and Structural Violence/ Social Justice................32
Estimated HIV Diagnoses Among MSM 1994 - 2003.............................34
AIDS Case Rate per 100,000 Population, by Race/Ethnicity, for Adults/Adolescents,
2006...............................................................................43
Example of Counseling, Testing and Referral In Settings Serving
Populations At Increased Behavioral or Clinical HIV Risk...........................58
Example of HIV Counseling, Testing, and Referral In Low Prevalence
Settings...........................................................................58
vii


List Of Tables
Overview of key questions guiding the evaluation of the roll-out of rapid
HIV testing in Colorado...........................................................xv
FDA-approved rapid HIV antibody screening tests used by study sites...............4
Epidemiologic yield (roll-out sites)...............................................7
First typology of violence and its various forms..................................14
Direct and structural violence....................................................23
Continuum of violence in war and peace............................................24
Key individual-level behavior change theories.....................................30
Racial and ethnic disparities in the HIV/AIDS epidemic: Colorado and U.S.
compared..........................................................................44
Population rates of HIV and aids cases by racial group in Colorado................45
Evolution of HIV antibody testing recommendations.................................64
Cost-effective interventions to prevent HIV infections............................78
Representativeness of provider interviews.........................................88
Codebook with definitions.........................................................92
Major Sources Supporting Policy Analysis..........................................94
viii


Introduction
HIV counseling and testing programs have served as the foundation of the HIV prevention
plan in the United States for many years. Client-centered prevention counseling, which was
designed to promote risk reduction among both sero-positive and -negative clients, had
served as a core component of such programs since the early 1990s (Centers for Disease
Control and Prevention [CDC], 2001b). Such client-centered prevention counseling had
traditionally been structured as pre- and post-test counseling, with the former conducted at
the time that a sample for the HIV antibody test was collected, and the latter conducted at the
time that the patient/client received his/her test result (i.e., about 10 days to two weeks later).
Prior to the advent of second generation rapid HIV testing procedures, anywhere from about
10% to 71% of clients/patients failed to return to receive the results of traditional testing
procedures and appropriately tailored post-test counseling (Sullivan, Lansky & Drake, 2004).
This percentage varied by test-site type and level of perceived risk, with sexually transmitted
disease (STD) clinic populations consistently having among the highest failure-to-return
rates. According to the Centers for Disease Control and Prevention (CDC) (2003a; 2004b),
about 30% of HIV-positive individuals who were tested at publicly-funded sites failed to
return for test results and may have remained unaware of, or in denial about, their
seropositivity.
Current statistics estimate that 25% of HIV-positive individuals are unaware of their
serostatus (CDC, 2003a). In addition, an unmet needs analysis based on data provided by
Ryan White Title I and Title II grantees found that, Estimates of the percentage of people
with AIDS who are out of care [were] most often in the high 20s or low 30s, while estimates
of the percentage of people with HIV/non-AIDS who are out of care [were] most often in the
high 40s or low 50s (Mosaica Unmet Need TA Center, 2006, p. 3).2 HIV-positive
individuals who are unaware of their status, and those who are not in care, are among those
most likely to transmit the virus to others. For this reason, HIV-positive individuals served as
the target of CDCs Serostatus Approach to Fighting the Epidemic (SAFE) and, more
recently, the prevention-for-positives strategy of the Advancing HIV Prevention Initiative.
Within the context of these new prevention initiatives, CDC promoted expanded access to
rapid HIV testing with same day results as a tool to increase the number of HIV-positive
individuals who were screened, diagnosed and subsequently linked to care.
In addition to the emergence of new prevention initiatives, federal guidelines for HIV testing
have undergone major modifications in recent years. Such changes in public policy
culminated with the release, in September 2006, of revised recommendations for HIV testing
in health care settings (CDC, 2006d). In order to identify more HIV-positive individuals of
2
The trends identified in 2005 held true in 2006 despite changes in population size and variations in
grantee methodology (page 3).
IX


unknown serostatus, the revised guidelines recommended universal screening of patients
between 13 and 64 years of age in health care settings with an established seroprevalence of 1
per 1000.3 The guidelines also made it possible to conduct rapid HIV testing in venues as
diverse as STD clinics, emergency departments, and substance abuse treatment centers
without pre-test counseling or a separate informed consent process (see Summary of the 2006
Revised Recommendations, page 2). Such changes represented significant departures from
previously published guidelines. The revised recommendations relaxed the traditional
counseling and informed consent requirements, as such requirements were perceived to serve
as barriers to expanded HIV testing programs in health care settings.
In the 2006 Recommendations, CDC explained that the renewed focus on testing was a
response to the persistent pattern of more than 40,000 new infections occurring each year a
level initially reached in 1998 (CDC, 2006d).4 Moreover, increasing numbers of young,
racial/ ethnic minority men who have sex with men are becoming infected. Recently released
HIV surveillance data published in March 2008 by the CDC revealed a nearly 80% increase
in new HIV infections from 2001- 2005 in this population.5 Such populations tend to be
tested later in the course of their HIV infection than other groups and disproportionately lack
access to quality medical care and treatment.6 Furthermore, it is well established that risk
behaviors have increased among men who have sex with men and youth. In light of such
epidemiologic trends, CDC officials have questioned the effectiveness of targeted screening
practices and prevention counseling for HIV-negative individuals, as many persons at
increased or heightened risk either do not disclose their risk to health care professionals or are
not aware of their risk (CDC, 2006d).
3 The guidelines also recommend that universal screening of patients occur in health care settings
where the seroprevalence of the patient population is unknown in order to establish the epidemiologic
yield. Importantly, universal screening is not recommended for sites with a lower seroprevalence
than 1 per 1000 due to concerns about false positives.
4 More recent surveillance data, released by the CDC in March 2008, reported a more accurate estimate
of 52, 878 new cases for 2006 a figure that was based on confidential, name-based reporting from a
larger number of states; the previous figure reported in 2005 was 35,537 (CDC, 2008c).
5 Community HIV/AIDS Mobilization Project (CHAMP), email to Spirit of 1848 listserv, March 28,
2008.
6 In a first-of-its-kind study, UCLA researchers have shown that segments of the HIV-infected population who
have little to no consistent outpatient medical care and yet are most in need of such services are
overwhelmingly minorities, the poor and substance abusers (University of California. (2007, October 24). Most
HIV-Positive Individuals with Inadequate Outpatient Care Are Minorities. Retrieved May 14, 2008, from
http://www.universitvofcalifomia.edu/news/article/8612)
X


Specific Aim and Research Questions
The degree to which HIV prevention policies that focus on testing and the identification of
HIV-positive individuals have shaped rapid HIV testing and associated prevention counseling
programs at the local level, and the implications for primary prevention among those at
greatest risk but who are negative, have not been sufficiently explored. Therefore, the
specific aim of the thesis project was to examine the implications of changes in both HIV
antibody testing technology and HIV testing guidelines for high-risk, negative patients/
clients. The resulting exploratory study was designed to investigate how and to what degree
opt-out consent processes had been adopted, and client-centered prevention counseling was
being conducted, in conjunction with second generation rapid HIV testing. These issues were
examined in different testing venues of the Denver Metropolitan Area of Colorado the area
of the state with the highest HIV prevalence and incidence (Colorado Department of Public
Health and Environment [CDPHE], 2002; 2004). Semi-structured key informant interviews
with providers, analysis of national HIV prevention policies and other policy documents and
a critical rereading of the HIV prevention literature served as the methods used to address
primary and secondary research questions of interest.
The primary research question concerned:
How (in what ways) might recent shifts in national HIV prevention policy and, by
extension, prevention practice, perpetuate or ameliorate structural violence among
groups at greatest risk?
Given the links between structural violence and public policy an assertion that will be
discussed in greater detail below and the goal of examining implications of policy changes
for populations most vulnerable to HIV, structural violence emerged as a natural conceptual
framework guiding the analysis and interpretation of data. The primary research question
also emerged inductively during the iterative process of exploring recent shifts in national
HIV prevention policy and beginning the process of critically rereading the HIV prevention
literature in light of the CDC guidance for HIV testing. The latter, in particular, revealed that
the rationale used by the CDC to support a number of the recent changes in HIV prevention
policy lacked a sound evidence basis. The hypothesis subsequently explored through the
thesis research was that public policies, when they are not evidence-based, but are informed
rather by ideology and politics, are more likely to exacerbate (rather than ameliorate)
structural violence. The present examination of HIV prevention policy in the United States -
the thesis as a whole, in other words thus serves as a case study that is meant to test this
hypothesis. To the degree that this hypothesis was not disproved by the thesis research, the
implication is that, in order for public policy to promote social justice, such policies must be
evidence-based. Therefore, this studys findings potentially have broader implications
beyond the domestic HIV prevention policies of the current administration; indeed, a similar
question may be posed in relation to any public policies of any government administration.
xi


In order to address the larger, overarching question concerning the implications of changes in
HIV prevention policy and testing technology for populations at greatest risk, it was
important to assess, first and foremost, how recent changes at the national level have
impacted HIV prevention practice locally a secondary question that served as a focus of key
informant interviews with local providers. Specifically,
1. In what ways is the counseling and testing process, as conducted in conjunction with
second generation rapid HIV tests, similar to and/or different from the counseling and
testing process conducted in concert with traditional (ELISA) HIV antibody testing?
and
2. What factors shaped changes in HIV counseling and testing practice?
3. Changes in CDC recommendations for HIV counseling and testing, particularly in
health care settings, as well as changes in testing technology were specifically
explored, as were practitioners perspectives on the efficacy of prevention
counseling.
The following venues directed the selection of eligible study sites:
Emergency departments serving a large percentage of indigent patients;
STD clinics associated with local health departments; and,
Counseling and testing sites housed in community-based organizations that primarily
serve racial/ ethnic minorities.
These settings were prioritized because they represent locations that CDC has emphasized as
venues with the greatest potential to identify persons with previously undiagnosed HIV.
Such venues tend to serve those disproportionately impacted by the HIV/A1DS epidemic,
such as racial and ethnic minorities, the under- or uninsured, and young people. Therefore,
these venues were also salient given the conceptual framework of the study.
Structural Violence The Conceptual Framework
The editors of Women, Poverty and AIDS: Sex, Drugs and Structural Violence, a book that
critiques the biological reductionism that serves as the predominant paradigm for interpreting
population trends in the HIV/AIDS epidemic, define structural violence as a series of large-
scale forces ranging from gender inequality and racism to poverty which structure
unequal access to goods and services (Farmer, Connors, & Simmons (Eds.), 1996, p. 369).
In Chapter 1, Farmer states that structural violence occurs when historically-given (and often
economically-driven) processes and forces conspire to constrain individual agency (p.23).
Quoting Galtung, who originally coined the phrase structural violence, Farmer and
colleagues (2006) explain that:
Xll


Structural violence is often [entrenched] in longstanding ubiquitous social
structures, normalized by stable institutions [including the media] and regular
experience. Because they seem so ordinary [in terms of the way that we
have been socialized to understand and experience the world], they appear
almost invisible (p. 1686).
Thus, there is no specific actor to hold accountable for such violence because it is embedded
in the social fabric of society, promulgated by social policies, and embodied as the illness and
disease experiences of individuals.
As suggested above, institutions may perpetuate structural violence through the policies they
develop and/or endorse. Such policies, and the ways they are implemented, can serve to
encrypt such prejudice into social structures and, ultimately and unconsciously, into our
individual and collective psyche. An unquestioned or unchallenged social order is thus
created and, importantly, maintained that tends to concentrate privilege among those with
access to social, political and economic resources and concentrates disadvantage among those
who have historically been victimized by racism, sexism, ageism and other types of prejudice
and discrimination. As alluded to above, these social harms manifest themselves in a variety
of ways, including the health status of individuals, observed collectively across social groups
as health disparities. The disproportionate representation of gay men, persons of color, and
the poor in the HIV/AIDS epidemic is an example of one such health disparity. It is, thus,
impossible to discuss structural violence without acknowledging the role of institutions
(including governmental health institutions) in perpetuating such violence, particularly when
the public policies they endorse lack an evidence basis a perspective that will be explored
throughout the thesis.
In the present study, structural violence serves as more than a key term; it provides a
conceptual framework an interpretive lens for deciphering the meaning of the data
collected and analyzed. The overarching research question, which examines the implications
of changes in HIV prevention policy and testing technology for structural violence among
those at greatest risk, is salient given the social, political and economic contexts that have
shaped the epidemic and have resulted in HIV infection, more advanced AIDS cases and
AIDS-related deaths being concentrated among socially-vulnerable groups racial/ ethnic
minorities, men who have sex with men, youth and the poor. Importantly, the primary
research question is framed in a way that leaves open the opportunity to explore how recent
policy initiatives at CDC might also address structural violence and, thus, acknowledges the
important role of institutions, not only in the perpetuation of structural violence, but also in
ameliorating its destructive force and influence.
Xlll


Impetus for the Proposed Research
Over a six-month period from July to December 2003, Colorado was involved in one of the
largest roll-outs of the innovative rapid HIV-1 antibody testing product, OraQuick* (OraSure
Technologies, Inc., Bethlehem, Pennsylvania). The roll-out in Colorado was coordinated by
the Colorado Department of Public Health and Environment (CDPHE) with funding provided
by the CDC. An independent contractor, OMNI Research & Training, Inc. (OMNI), was
selected to conduct the evaluation. CDPHE designated the following as priority populations
for rapid HIV testing during the roll-out based on epidemiologic trends that showed these
groups to be at increased or heightened risk for HIV infection in Colorado, as well as
nationally:
Men who have sex with men (MSM),
Injecting drug users who share works (IDU),
Persons exposed to individuals known to be HIV positive,
Partners of MSM or IDU,
Individuals who trade sex for something of value, such as money, drugs or shelter,
and
Individuals who have a history of STDs.
The evaluation focused on assessing the following domains of interest to state health
department authorities: client acceptance, provider experience, quality assurance, and
epidemiologic yield. The research questions, specified by CDPHE, that guided research
design and data collection efforts, are presented in Table 1, below.
xiv


Table 1: Overview of key questions guiding the evaluation of the roll-out of rapid HIV testing
in Colorado
Evaluation Component Key Questions Guiding the Evaluation
Client Acceptance How satisfied were clients with their experience after receiving services involving rapid testing? What aspects of rapid testing did clients find acceptable and suited to meeting their needs? What aspects of rapid testing did clients find less than acceptable or unsuited to meeting their needs?
Provider Experience How satisfied were providers with rapid testing protocols and procedures? What were perceptions regarding client experiences using the rapid test? How well were rapid testing activities integrated into other services and activities delivered by providers? What changes were necessary at the provider level in order to provide rapid testing?
Quality Assurance To what extent were clients tested according to eligibility criteria developed as part of project protocols? To what degree did providers follow manufacturers instructions for obtaining and testing samples?
Epidemio- logic Yield Did the availability of rapid testing result in increased tests among persons at greater risk for HIV infection? Did rapid testing result in increased numbers of individuals who receive their results? Did rapid testing identify more individuals who are infected with HIV?
Although not explicitly articulated as a key area of interest for the evaluation, the need to
adapt prevention counseling practice in order to maintain its client-centered focus and
effectively address risk reduction/ primary prevention within the context of rapid HIV testing
emerged as a major theme across traditional counseling and testing sites participating in the
roll-out. Salient issues included the following:
Thwarted attempts to continue to engage clients in prevention counseling after they
received same-day test results (the equivalent of post-test counseling);
xv


The consequential need to load the single prevention counseling session that
occurred prior to the reporting of OraQuick test results; and,
Variability in the structuring of prevention counseling around the rapid HIV testing
process.
These findings suggest that the advent of second generation rapid HIV testing has significant
implications for the delivery of quality, client-centered prevention counseling (independent of
changes in HIV testing guidelines) that need to be explored. Most obviously, testing with
same-day results has the potential to reduce the number of prevention counseling sessions
that HIV-negative clients have traditionally received, as only preliminary positive clients (i.e.,
those whose rapid HIV test was reactive) are likely to receive post-test counseling. The latter
must return to the test site to receive confirmatory results, at which time preliminary positive
individuals might receive additional counseling and psychosocial support. In other words,
within the context of rapid HIV testing, the majority of high-risk clients who test negative
(about 90%; Famham et al., 1996, p. 44) are likely to receive only a single prevention
counseling session pre-test counseling, followed by the reporting of test results. A white
paper titled HIV Counseling with Rapid Tests, published by the CDC in 2003, confirms this
study finding:
Clients with HIV-negative rapid HIV test results usually have only one test-
associated opportunity [to be engaged in client-centered prevention
counseling]. They will not have the opportunity to try out their risk-
reduction plan or to discuss with the counselor their attempts [to carry] it out
before they receive their HIV result.
Importantly, the revised recommendations for HIV testing in health care settings suggest that
it is acceptable to omit pre-test counseling and informed consent procedures in such settings
where these requirements have served as barriers to testing in the past (such as emergency
departments). Therefore, it is possible, within the current policy context, that HIV-negative
patients who are tested in health care settings (broadly defined) may receive no information
other than a written pamphlet, even if HIV testing was not the reason for their visit.
Research (presented in Chapter 1) has shown that the availability of rapid HIV testing
encourages individuals at increased or heightened risk of HIV infection to seek testing and
learn their serostatus. The emergence of new testing technologies, not unlike other
innovations, must be assessed, however, not only in terms of the important opportunities they
create/ their benefits, but also in terms of the unintended consequences of rapid dissemination
without a critical and rigorous examination of the implications. Such an examination is what
this thesis seeks to accomplish.
xvi


Overview of the Thesis
The dissertation is organized into three major sections: Background and Significance (Section
I), Research Design and Methods (Section II), and Findings (Section III). Four chapters
comprise Section I and provide an important backdrop for the conceptual framework,
research questions and design considerations that are outlined in Section II:
Chapter 1: Technological Innovations in FIIV Testing: Implications for the Uptake of
Testing among Populations at Greatest Risk,
Chapter 2: Structural Violence: A Theoretical Framework
Chapter 3: The Resurgence of the HIV/AIDS Epidemic: The Epidemiological
Context of Rapid HIV Testing, and
Chapter 4: How Sound is CDCs Response to a Changing Epidemic? A look at the
Evidence.
Section II is comprised of a single chapter that describes the research design and
methodologies used, provides an overview of the data that informed the thesis and discusses
limitations.
Section III, is comprised of two chapters that seek to provide a detailed account of local HIV
prevention practice, both in health care settings and community-based organizations. The
analysis explores how and the degree to which local HIV prevention practice has been
affected by changes in HIV testing technology and prevention policy. The experience of
local health care settings and community-based organizations is examined in light of the
assumptions and rationale presented by CDC in its revised guidance. Throughout this
discussion, and the critical review of the literature presented in Chapter 4, the evidence-base
of CDCs current policy positions is deconstructed and the implications for populations at
greatest risk is examined.
Due to the centrality of the policy analysis to the dissertation, the thesis culminates with an
examination of the implications of study findings for public policy. Specifically, the final
section, Section IV, summarizes major conclusions drawn from this work and presents
specific policy recommendations.
XVll


Section I: Background and Significance


CHAPTER 1
TECHNOLOGICAL INNOVATIONS IN HIV TESTING: IMPLICATIONS FOR THE
UPTAKE OF TESTING AMONG POPULATIONS AT GREATEST RISK
This chapter introduces second generation rapid HIV tests and the ways in which rapid HIV
testing technology addresses barriers to testing and learning ones serostatus among those at
increased or heightened risk. A brief history of HIV antibody testing in the United States sets
the stage for this discussion.
History of HIV Antibody Testing in the United States
As an individual-level intervention, counseling, testing and referral (CTR) has served as a
major component of U.S. HIV prevention and care strategies (Famham et al., 1996, p. 44).
The U.S. Food and Drug Administration (FDA) first approved a test to detect antibodies to
HIV in the blood in March 1985, nearly four years after CDCs initial report on the outbreak
of Kaposis sarcoma and Pneumocystis pneumonia among homosexual men (Shilts, 1993).
Publicly-funded HIV antibody testing provided an alternative to blood donor screening and
served as a mechanism for high-risk individuals to learn their serostatus (Bayer, 1989).
According to information available on the Web site of the AIDS Task Force of Greater
Cleveland:
In 1987, with the increased understanding of the scope and severity of the
HIV epidemic and the predictive value of a positive test, HIV counseling and
testing were extended to the general public through state certified testing
sites. Persons seeking care for sexually transmitted infections, family
planning, childbirth, and substance abuse were counseled and tested in an
attempt to reduce their risk for HIV transmission. Since 1987, ... the
primary public health purposes of HIV [CTR have been to] reinforce the
perception of risk [among] those who are unaware or ill-informed; assist
uninfected individuals to initiate and sustain behavioral changes that reduce
the risk of infection; arrange access to necessary medical, prevention and
case management services for persons with a positive test result; assist those
already infected from infecting others; and, assist infected clients in the
referral of as many of their sex and needle-sharing partners as possible.
Today, there are two major types of HIV antibody testing technologies available: the
traditional enzyme-linked immunosorbent assay (ELISA) and second generation rapid HIV
tests. With several rapid HIV tests on the market that can be used with a variety of specimen
types and that can detect both HIV-1 and 2 antibodies, the traditional ELISA test is quickly
becoming obsolete. In fact, in Colorado, the rapid test is what is currently referred to as the
standard test, at least by state health department officials.
1


The main differences between the two testing technologies are how test results are processed
and how soon these can be made available to patients/ clients. ELISA tests require a waiting
period before individuals can learn their serostatus. In order to receive the results of
traditional HIV tests, therefore, clients/ patients often had to return to the testing site.7 Rapid
HIV testing, by contrast, permits clients to learn their serostatus within a matter of minutes.
Traditional HIV testing involved a 10-day to two-week waiting period between the time that
a blood or other sample was collected and when test results were available. This waiting
period was the result of the fact that specimens were often bundled for processing in a
laboratory (i.e., multiple specimens were screened simultaneously). Only when sufficient
numbers of specimens had been collected were the assays run. (This is why relatively larger
laboratories are often used to process HIV test results.) Those specimens that were
determined to be repeatedly reactive using screening assays were then confirmed with a
Western blot procedure a highly specific confirmatory test that may not be run on a daily
basis, even in relatively larger laboratories (Famham et al., 1996, p. 45).
The waiting period associated with traditional HIV testing has been identified as an important
barrier to individuals seeking testing (Kellerman et al., 2002). A number of studies document
that the waiting period represented a particularly important barrier to testing for those at
increased or heightened risk of HIV infection (Keenan & Keenan, 2001; Molitor et al., 1999;
Spielberg et al., 2003). Among those who did get tested for HIV, failure-to-retum (FTR)
rates were high. For example, of those who tested positive at CDC-funded public testing
sites, 31% did not return for their results (CDC, 2004b).
The CDC estimates that, nationally, between 850,000 to 950,000 individuals are infected with
HIV the virus that causes AIDS (CDC, 2004b); about one in four HIV-positive individuals
(25%) do not know their serology status and may be unwittingly spreading the virus (CDC,
2001b; 2004c). In policy documents, CDC highlights research that suggests that HIV-
positive individuals, upon learning their serostatus, often engage in some degree of positive
behavior change that helps prevent the transmission of HIV to uninfected others (see, for
example, CDC, 2001b, p. 4; CDC, 2006a, p. 6). This has been found to be particularly true of
HIV-positive persons in treatment (CDC, 2000).8 Armed with this evidence, the CDC is
currently encouraging individuals to learn their status and to seek testing.
7 At a few sites, patients could receive a confirmed negative standard HIV test result over the phone.
Confirmed seropositive patients were requested to return to the testing site for results and consultation
(Schluter et al., 1996).
8 Recent epidemiologic trends however indicate that HIV-infected persons (particularly MSM)
receiving HAART are contracting STDs at increasing rates a finding that suggests that at least some
HIV-infected persons in treatment do still engage in high-risk sexual behavior; Chapter 3 further
explores this issue.
2


Barriers to receiving HIV testing and learning ones serostatus contribute to delayed
diagnosis and initiation of medical treatment, which are linked to poorer health outcomes and
reduced quality of life during the course of infection and disease progression (Gallant, 2004).
Furthermore, pharmacological management of HIV helps suppress viral loads, which can
make a seropositive individual relatively less infectious should they engage in high-risk
behaviors. However, national studies have revealed that as many as 41% of HIV-positive
individuals either do not learn of their serostatus until they become symptomatic for AIDS or
receive an AIDS diagnosis within a year of testing positive (Levi, 2002). In Colorado, 43%
of individuals are diagnosed with AIDS within 12 months of receiving a positive test result;
36% present with AIDS within two months of receiving a positive test result (George Ware,
personal communication, September 18, 2004). Barriers to receiving counseling and testing
services and learning ones HIV status are, therefore, associated with significant individual,
medical and societal costs. These barriers impede efforts to prevent new infections and to
control individual infections effectively through pharmacological management, and mean that
limited HIV/AIDS prevention dollars are expended on resource-intensive follow-up activities
to locate HIV-positive individuals who failed to return for test results.
Second Generation Rapid HIV Antibody Tests
Rapid HIV testing addresses many of these barriers by making it possible to provide same-
day results. Sites that participated in the thesis research were typically using one of two
second generation rapid HIV tests: the OraQuick ADVANCE^ rapid HIV-1/2 antibody test or
the Uni-Gold Recombigen (Trinity Biotech pic, Wicklow, Ireland) HIV test. The
OraQuick ADVANCE^ HIV antibody test allows more flexibility than the original OraQuick
test first approved by the Food and Drug Administration (FDA) in November 2002.
Specifically, while the original test could only be used to detect HIV-1 antibodies in whole
blood specimens, the new test can detect both HIV-1 and 2 antibodies, can be used on
different types of specimens (including oral fluid, plasma, and whole blood) and can be
performed in a wider range of temperatures (59F to 99F). During the data collection
period, OraQuick ADVANCEJ was the only rapid HIV test on the market that could detect
antibodies to HIV-1/2 in oral fluids obtained by swabbing the mouth. Although the vast
majority of sites used the OraQuick test, at least two sites either planned to replace OraQuick
ADVANCE^ with Uni-Gold or had recently made this transition. One of the main reasons
given for choosing Uni-Gold was cost; one site reported being able to purchase Uni-
Gold test kits for $ 10 each, compared to $ 15 for the OraQuick AD VANCE*'. Both tests
have received a Clinical Laboratory Improvement Amendment (CLIA) waiver (CDC, 2002a),
3


making it possible to process test results outside the laboratory. Certain environmental
parameters must be adhered to, however, in order to administer the tests reliably.9 10
The time required to process rapid HIV test results depends on the specific test used. The
OraQuick ADVANCE* rapid HIV-1/2 antibody test requires at least 20 minutes, while the
Uni-Gold test requires at least 10 minutes before test results can be reliably read and
reported to a patient/ client. Table 2 further compares the two tests.
Table 2: FDA-approved rapid HIV antibody screening tests used by study sites10
Test Specimens Sensitivity Specificity Time to conduct* Window period for test validity**
OraQuick ADVANCE Rapid HIV- 1/2 Antibody Test oral fluid, plasma, and whole blood 99.3% (oral) 99.6% (plasma, whole blood) 99.8% (oral) 99.9% (plasma) 100% (whole blood) <5 min. (<10 min. for plasma) + 20 min wait time 20-40 mins.
Uni-Gold Recombigen HIV human serum, plasma, whole blood 100% 99.7% <5 min. + 10 min wait time 10-12 mins.
* First time listed in estimated time required to set up test. The second time is the required
wait time before reading results. Times listed exclude time needed to draw/obtain sample.
** As measured from last step of testing process
The specificity and sensitivity of both rapid HIV tests used by study sites are comparable to
that of enzyme immunoassays (ELAs). (Sensitivity is defined as the probability that a test
will yield a positive result if the specimen is a true positive in the case of HIV testing, does
contain antibodies to the HIV virus. The specificity of a test is the probability that it will
yield a negative test result if the specimen does not contain antibodies to HIV in other
words, is a true negative.) Because the negative predictive value of these screening devices is
high at the HIV prevalence observed in most U.S. settings, clients with non-reactive rapid
9 Environmental parameters for conducting OraQuick testing include maintaining test kits (including
controls) within a specified temperature range, and administering the test in a well-lit, smoke-free area
and on a flat, stable surface that will not be shaken or otherwise disturbed.
10 Source: FDA-Approved Rapid HIV Antibody Screening Tests Purchasing Details. February 7.
2007. Prepared by Kali Stanger and Frances Margolin at the Heath Research and Educational Trust
and Bernard Branson, Jill Clark, and Margaret Lampe at CDC. Retrieved May 18, 2007, from
http://www.hret.org/hret/programs/content/rpd2.pdf
4


HIV test results can be told that they are negative and that no further testing is needed (CDC.
2003d).11 Because false-positives are more likely to occur when a screening test (even one
that is highly specific) is used to detect an infectious agent that has a low prevalence (Metcalf
et al., 2005), reactive rapid HIV tests must be confirmed with the Western blot procedure.
Preliminary positive clients/patients a very small proportion of the overall rapid HIV testing
population must, therefore, return to the testing site to receive definitive test results.
Importantly, while preliminary positive clients must still endure a waiting period,
confirmatory test results are typically made available much more quickly than is the case with
confirmed ELISA test results. Ideally, preliminary positive messages regarding the
likelihood of infection are informed by the clients initial risk assessment and the providers
knowledge of the seroprevalence of the client/patient population served.
Only a small amount of blood is needed to process test results using OraQuick ADVANCEi
and Uni-Gold; this sample can be obtained with a fingerstick.12 The simplified sample
collection process makes HIV testing more palatable to populations who are venous
compromised (such as IDU) or are fearful of venipuncture (National Alliance of State and
Territorial AIDS Directors, 2003). Because venipuncture is not required to obtain a sample
for rapid HIV testing, providers not trained in phlebotomy may conduct such testing.
Consequently, the availability of second generation rapid HIV testing makes it more feasible
for counseling staff to conduct all aspects of the counseling and testing process, thus
potentially enhancing the continuity of service provision and the rapport established with
clients.
In summary, rapid HIV testing has been found to minimize or remove barriers normally
associated with traditional HIV testing, such as the extended waiting period, the need to
return to the testing site for results, and the invasiveness of sample collection procedures.
Prevention specialists hoped that, by addressing such barriers, rapid HIV testing would:
Increase the number of individuals at increased or heightened risk for HIV infection
who are tested,
Increase the number of clients who learn their test results, and
11 If, however, it is determined that a client with a non-reactive OraQuick test has recently engaged in
a behavior that might have placed him/her at risk for HIV, the provider should recommend that the
patient/client retest three months after the possible exposure event. This reference to the window
period is often used by providers to encourage high-risk, negative patients/ clients to retest in the near
future.
12 Whole blood specimens collected through venipuncture can also be used; specimens collected by
venipuncture are most often used when blood must be drawn for other diagnostic tests (such as
syphilis).
5


Decrease the need for follow-up activities targeting clients who do not return for their
HIV test results and associated prevention counseling (National Alliance of State and
Territorial AIDS Directors, 2003, p. 2-3).
These hypotheses will be examined in detail below.
Epidemiologic Yield of OraQuick"
Evaluation findings from the roll-out of the original OraQuick HIV-1 antibody test in
Colorado,13 which took place from July to December 2003, supported the anticipated benefits
of rapid HIV testing put forth by the National Alliance of State and Territorial AIDS
Directors. Specifically, the evaluation found that about 36% more individuals were HIV
tested during the roll-out at the 8 participating sites when compared to the same period of
time the year before; a third more individuals were HIV tested at participating sites when
compared to a similar, six-month period directly before the roll-out. Increased testing has
also been observed in conjunction with the introduction of rapid HIV testing at other testing
sites across the country (see, for example, Branson, 2005). In Colorado, about twice as many
confirmed, HIV-positive individuals were identified at participating sites during the roll-out
when compared to either previous comparable time period. Sixty-seven percent of newly
identified, HIV-positive individuals (18 of 27) were identified with OraQuick as opposed to
traditional testing algorithms.
13 Evaluation findings featured here were presented at the Public Health of the Rocky Mountains
Regional Conference, Breckenridge, CO, on September 27, 2004 with the permission of the STD-HIV
Section, Colorado Department of Public Health and Environment.
6


Table 3: Epidemiologic yield (roll-out sites)
Implementation Phase Comparable period of time prior to roll-out Same period of time the year before
# of HIV Tests 2,534 1,692 1,612
# of new HIV + individuals identified 27 18 (OraQuick) 4 (blood) 5 (oral) 15 13
Failure-to-retum rate *pertains only to individuals who tested HIV positive OraQuick: 11.8% 16 confirmed + 1 false positive 2 did not return 26.7%* 4 did not return 2 found by DIS 15.4%* 2 did not return 1 was found
Seropositivity rate 1.07% 0.89% 0.81%
Significantly more individuals at increased or heightened risk of HIV infection received HIV
testing at participating sites during the roll-out, including those at greatest risk:
MSM
IDU
Clients at risk due to sexual exposure to MSM or IDU
Clients exposed to individuals known to be HIV positive
Clients who had engaged in anal sex
Clients who had not used condoms at last sexual intercourse, and
Clients who reported having three or more sex partners in the past 12 months.
Findings emerging from the roll-out of OraQuick in Colorado, as well as other sites across
the nation, thus suggest that the provision of rapid HIV testing with same-day results can
increase the number of high-risk individuals who seek testing and learn their test results,
thereby decreasing the need for intensive follow-up activities. High client acceptance of
rapid HIV testing suggests that venues seeking to increase the proportion of high-risk clients
who initiate testing and learn their serostatus will increasingly adopt rapid HIV testing
procedures. The approval of other second generation rapid HIV tests will undoubtedly
7


facilitate this trend (CDC, 2002a; 2003a).14
Rapid HIV Testing: The Implications for Prevention Counseling and Behavior Change
Rapid HIV testing has significant implications for the delivery of quality, client-centered
prevention counseling. Most obviously, testing with same-day results has the potential to
reduce the number of prevention counseling sessions that HIV-negative clients have
traditionally received. With traditional HIV testing, clients who returned for test results
received two prevention counseling sessions, structured as pre- and post-test counseling.
Findings from the roll-out of OraQuick in Colorado suggested that, within the context of
rapid HIV testing, by contrast, the majority of high-risk clients who tested negative would
receive only a single prevention counseling session, immediately followed by the reporting of
test results.
Evaluation findings also indicated that rapid HIV testing not only has the potential to change
the delivery of prevention counseling in terms of its structure (e.g., from the provision of two
prevention counseling sessions to one), but also in terms of its content and duration.
Specifically, counseling and testing staff who participated in interviews as part of the
evaluation of the roll-out described the importance of assessing client readiness to receive
same-day test results. This was deemed particularly important when working with
populations such as those presenting at STD clinics, who may have come to the health care
setting for other reasons and may not consider themselves at risk for HIV, as well as clients
with mental health concerns. Evaluating client readiness, cognitive and emotional capacity to
process the meaning of test results, and ability to leverage social support in the case of a
preliminary positive result were described as aspects of an essential assessment that began
during the process of obtaining informed consent.15 The capacity of the person to give
consent for rapid testing was deemed contingent upon these factors. Relevant information
also served, in some cases, as the foundation for the development of a preliminary positive
plan prior to the collection of a sample. Importantly, the process of assessing sources of
14 The uptake of rapid HIV testing by sites is likely to be mediated, however, by concerns regarding
unacceptable numbers of false-positives at sites with less than a 1% diagnostic yield. A state health
official described, during a key informant interview, how he/she often had to dissuade such sites from
offering rapid HIV testing due to this concern. In Colorado, the number of state-supported testing sites
has been reduced to 6. (During the roll-out, there were eight sites conducting rapid HIV testing, while
still other sites continued to conduct traditional EIA-based testing.) Despite the reduced number of
testing sites available, the CDPHE official reported (in 2007) that the number of HIV-positive
individuals identified annually in the state has remained constant.
15 Importantly, while the standard informed consent process in Colorado is not/was not designed to
incorporate these aspects, this is what was observed and described in practice.
8


support and cognitive, as well as coping, capacities reportedly helped clients assess their own
readiness to receive same-day test results.
A major theme that emerged during the key informant interviews, as well as participant
observations of counseling and testing sessions, concerned the need to load the pre-test
counseling session to enhance the effectiveness of the single counseling session that clients,
particularly those who tested negative, would receive. Key informants stressed the
importance of leveraging pre-test counseling opportunities given that patients/ clients would
not have either the waiting period during which he/she might try out his/her risk-reduction
plan or a second counseling session during which they might debrief such attempts and make
adjustments to the plan accordingly. Instead, the patient/client would be receiving test results
almost immediately.
Such issues, which have emerged with the advent of second-generation rapid HIV testing,
and the related implications in terms of cognitive behavior change processes for primary
prevention among high-risk negatives, have not been sufficiently rigorously explored and are,
consequently, not well elucidated in the research literature. To date, only one study has
compared the efficacy of counseling with rapid HIV testing to pre- and post-test counseling
with traditional ELISA testing. Published results of the RESPECT-2 study indicated only
subtle, clinically insignificant differences in STD incidence when study subjects received a
single session of prevention counseling versus the traditional two-session format (Metcalf et
al., 2005).16 Specifically, the authors report that STD incidence was higher in the rapid-test
group than in the standard-test group among men (RR, 1.34; Cl, 1.06-1.70), men who have
sex with men (RR, 1.86; 95% Cl, 0.92-3.76), and persons with no STDs at enrollment (RR,
1.21; 95% Cl, 0.99-1.48) (p. 130). The authors emphasize that, statistically, [reported]
behavior was similar in both groups (ibid). However, concern about the potential
disinhibiting effect of receiving negative same-day test results and condensed counseling was
noted in the discussion section of the published study. A key informant interview with a state
health official, which was conducted to inform the thesis research, shed more light on the
findings of the RESPECT-2 study. This person shared:
Although it didnt really come through very much in the final research, there
was some concern about the disinhibiting effect of people testing repeatedly
negative particularly men who have sex with men testing repeatedly
negative. That meant, Oh, I must not be as high risk as I thought I was.
And, getting told that within 20 minutes appeared to [have] even more of a
disinhibiting effect than having to wait two weeks for a result. So, there was
some evidence with Project RESPECT-2 that, Okay, weve got to really
think about this repeatedly testing people [who are] HIV negative.
16 Denver served as one of three national study sites.
9


Yet, and very ironically, high-risk groups, including men who have sex with men, are the
very populations that CDC currently recommends be tested on a regular basis (e.g., annually)
in the revised guidelines for HIV testing in health care settings (CDC, 2006d). While these
recommendations may help ensure that HIV-positive individuals are identified and at an
earlier stage of infection, the public health implications of CDCs recommendation for those
at greatest risk are not fully understood.17 For example, the literature does show a difference
in risk behaviors among those who test on a predictable basis (i.e., routine testers) and those
who have had more than one HIV antibody test (defined as repeat testers). However, the
state health department official cited above noted that prevention counseling did not seem to
ameliorate the disinhibiting effect for high-risk individuals of repeatedly testing negative. In
fact, the process of going through a thorough risk assessment, only to learn ones negative
serostatus moments later, may actually precipitate disinhibition, even among those who may
be more conscientious about reducing risk, such as the routine testers. The key informant
explained, You would think that maybe accompanying that test with a counseling session
would cut down on the disinhibiting effect. But, it doesnt seem to ... Regardless of what
you tell somebody, they look to the fact that theyve had a whole string of negative tests.
Enhancing the effectiveness of client-centered prevention counseling to address disinhibition
appropriately among high-risk negatives should emerge as a priority for providers and
prevention researchers. This line of inquiry is particularly important given current
epidemiologic trends, which point to a resurgence of high-risk behaviors among some
populations in the United States. Such trends reinforce the need for a critical examination of
efficacious models of client-centered prevention counseling, specifically adapted for second
generation rapid HIV testing, that may be developed and applied to prevent new infections
from occurring.
Conclusion
New HIV antibody testing technology has tremendous potential to address many of the
barriers to testing for populations at greatest risk. Because new rapid HIV tests facilitate
patients/clients receiving test results, such tests can help high-risk individuals know their
serostatus, get linked to care, and change risk behaviors that may place others at risk. Despite
these important advantages, the new antibody testing technology, which CDC is aggressively
promoting, has not been carefully examined in terms of the implications for the prevention
counseling process and behavior change. Preliminary data, available as a result of the
evaluation of the initial roll-out of rapid HIV testing in Colorado, surfaced a number of
important issues that warrant further study and investigation. Among them include how
providers adapt prevention counseling to the rapid HIV testing process, the ability of
providers to leverage effectively the pre-test counseling session for high-risk negatives, and
17 The new guidance will be examined further in Chapter 3.
10


how repeatedly testing negative impacts risk behavior for those at greatest risk. The thesis
research created an opportunity to revisit these issues at sites that had not only become
routine users of rapid HIV testing technology, but were also attempting to adopt CDCs
revised guidelines for expanded testing in health care settings.
11


CHAPTER 2
STRUCTURAL VIOLENCE A THEORETICAL FRAMEWORK
Introduction
Whenever someone asked about the topic of this dissertation and the researcher shared that it
was a critique of recent changes in HIV testing policy and the implications of these changes
for populations at greatest risk, the assumption often was that the issue was being explored in
an international context. Similarly, when structural violence, as a theoretical framework, is
discussed in the scholarly literature, it often undergirds a critique of US policy and the
historically-rooted intended and unintended consequences, particularly for disenfranchised
populations of economically underdeveloped countries; in other words, structural violence is
often explored in an international context. This dissertation seeks to bring both critiques to
the domestic forefront.
The way in which the HIV epidemic unfolded (and continues to unfold) in the United States,
it may be argued, is very much an American story. Americas story is complex, replete
with the heroic themes that are the stuff of mythology, and which are glorified by politicians
and selective portraits of the nations history of triumph over evil despite the daunting
odds, of self-reliance and resistance in the face of oppressive forces, and, of course, the
undying pursuit of justice. The American story, like any human story, also contains within its
pages elements that are difficult to read and think about and to discuss openly; the latter shed
a very different but no less revealing light on the American experience.
These themes include amassing land, wealth and their corollary, power, through massacres of
species and populations, the cruelty of domination driven by self-righteousness, and all the
forms of exploitation that go along with such an approach to dominion. Even more relevant
to the present analysis, the American story also includes such themes as governmental
indifference to suffering; of bureaucracy that give rise to ill-conceived, myopic policies; and,
of false promises and empty hopes created when disenfranchised populations buy into the
rhetoric but then encounter invisible structural barriers, making them vulnerable to blame and
indifference. These themes (both those to be celebrated and those that must be acknowledged
and redressed) have played out again and again within the context of HIV/AIDS epidemic in
the United States and are the subtext of the chapters that follow.
This chapter explores structural violence, which is used as the theoretical framework
throughout the dissertation. As such, structural violence serves as an interpretive lens,
supporting an understanding of the mechanisms underlying the concentration of the
HIV/AIDS epidemic among the poor and disenfranchised (the focus of Chapter 3), and the
implications of recent changes in HIV testing technology and prevention policy for these
populations (the focus of Chapters 4, 6 and 7). This chapter will present the intellectual roots
of structural violence, as well as its social, cultural and psychological dimensions. Since first
12


being introduced 40 years ago, structural violence has emerged as a powerful conceptual tool
for understanding the social, cultural, geopolitical, and economic determinants of health the
historically-rooted conditions that structure the health status of populations locally and
globally.
This chapter deliberately takes examples from American history and policy-making as a way
both to bring this critical analysis to bear on the American experience specifically, the
experience of persons of color and the poor who remain the most vulnerable to HI V/AIDS,
and to highlight the utility of a theoretical perspective that goes beyond middle-range theories
that are so often used to understand the psycho-social dynamics underlying relevant
epidemiologic trends.
The Intellectual Roots of Structural Violence
In a twist of intellectual irony, the need to understand peace and its various forms led to
important theoretical contributions in terms of our contemporary understandings of violence.
Structural violence, as a concept, is a contribution of the field of Peace Psychology a branch
of psychology that emerged in response to nuclear proliferation.18 The original
conceptualization of structural violence (as a distinct type of violence separate from what we
tend to understand as violence in a classical sense) is attributed in academic circles to Johan
Galtung (1969).19
Galtung was first and foremost concerned, intellectually and practically, with developing a
meaningful concept of peace that could guide international development work to foster the
conditions favorable to creating and sustaining peace. While he conceded that peace could be
thought of as the absence of violence, the concept of violence, itself, had to be broad enough
18 According to Christie, Wagner and Winter (2001), Peace psychology as a distinct area of
psychology did not begin to emerge clearly until the latter half of the twentieth century, when the
United States and Soviet Union were locked in a nuclear arms race that had compelling psychological
features and threatened the survival of humankind. The nuclear threat peaked in the mid-1980s,
igniting a counter-reaction by a generation of psychologists who began to identify themselves as peace
psychologists ... In 1990 ... the American Psychological Association recognized a new division, the
Division of Peace Psychology (Division 48)... [Today, there are] four main currents in peace
psychology: 1) violence, 2) social inequalities, 3) peacemaking, and 4) pursuit of social justice
(Preface to Peace, Conflict and Violence, pp. ix-x).
19 Paul Farmer, who has been the most prolific in terms of applying structural violence as a theoretical
framework for understanding the historical, political and economic conditions that structure morbidity
and mortality, also attributes the intellectual roots of the concept to liberation theologians (Farmer,
2004, p. 8). Here, I give more precedence to the work of Galtung because of his more rigorous
development of the term.
13


to encapsulate much more than the absence of direct force that thwarts physical or emotional
health/ well-being. According to Galtung:
We are rejecting the narrow concept of violence according to which
violence is somatic incapacitation, or deprivation of health, alone (with
killing as the extreme form), at the hands of an actor who intends this to
be the consequence. If this were all violence is about, and peace is seen
as its negation, then too little is rejected when peace is held up as an ideal
... Hence, an extended concept of violence is indispensable (1969, p.
168).
As a broader concept, Galtung originally defined violence (among human beings and human
societies) as any force that prevents human potential from being achieved or realized.
Poignantly, in this early work, Galtung conceived of violence as the cause of the difference
between potential and actual states, when this difference was preventable or avoidable. In
addition, he defined structural violence as that which leads to an increase in the distance
between the potential and the actual, and that which impedes intervention to narrow this gap.
Later, in a work published in 1981, Galtung defined violence more parsimoniously as,
Anything avoidable that impedes human self-realization (p. 84). While the latter definition
may be more appealing due to its simplicity, the original, more-fully operationalized
definition will be applied later in the analysis of public policy and its relationship to structural
violence, with HIV prevention policy as a special case.
Although Galtung has built a long and distinguished career in peace and conflict research,
perhaps his greatest theoretical contribution and intellectual legacy is his typology of
violence, also first published in 1969. This deceptively simple typology is presented in Table
4.
Table 4: First Typology of Violence and Its Various Forms
Violence as Event Violence as Permanent
Violence as action Type I Type II
Violence as non-action Type III Type IV
Galtungs theory of violence was predicated on the fundamental and perhaps somewhat
controversial premise that violence is not always consequent with direct physical assault
(intended/ unintended, aggressive/ defensive) imposed by a specific, identifiable actor, as is
the case with wars, genocide, torture, homicide, even suicide (Type I, above). Galtung turned
this more traditional or classic understanding of violence on its head, suggesting that violence
could have a more insidious presence, even in peacetime or among ostensibly peaceful
societies. Galtungs conceptualization suggests that violence, as a force, can behave like
14


gravity and have a ubiquitous presence that unconsciously influences every aspect of our
lives. We become so accustomed to the consistent way in which this force influences the
internal workings of society that we continue about our lives never questioning the natural
(social) order.
The latter form of violence is what Galtung referred to as structural violence Types II, 111
and IV (its purest form), above. Structural violence, according to Galtung, is not carried out
by a single, identifiable perpetrator; rather, it is built into the structure of society and codified
in the rules that guide social life both implicitly (for example, as social norms and prejudices)
and explicitly (in the form of official rules, public policies and laws, which historically have
(consciously and unconsciously) served to institutionalize social biases based on race/
ethnicity, gender, sexual orientation, age, etc). Because such biases are institutionalized,
systems are created that ensure that those with a disadvantaged social status are striving to
function within a context of structural limitations, thus making it more challenging to achieve
their potential (i.e., close the gap between their potential and actual states of being). In this
way, social structures can serve to reify disadvantage and diminished potential and,
importantly, reinforce belief systems (held both by those with the power to change the system
and also its victims) about the inferiority of those with less desirable social/ cultural
attributes.
Such biases are not only institutionalized in the sense that they become part of the structures
of social institutions; they are also institutionalized in the sense that they are incorporated into
our collective and individual psyche through socialization. Through this socialization
process, generations of a given society internalize the social biases and cultural ideals of their
local/ national/ global community; this formative process occurs largely unconsciously.
Because structural violence systemically reproduces disadvantage based on demographic
attributes such as race/ethnicity and socioeconomic status, a social stratification that reflects
these same characteristics is maintained over time. Hence, a false consciousness is created:
the attribute itself comes to be seen as the root of the problem rather than the structural
conditions that systematically maintain disadvantage for a particular group of people/
population. Racist-motivated beliefs that some segments of society simply cannot achieve
their potential, or, in fact, have a lower potential than others, becomes a normalized
expectation -that thats just the way things are and there is very little that can be done to
change the situation. Consequently, our sensitivity and sensibility regarding the injustice
inherent within social systems is dulled and the impetus for social change diminished, thus
impeding intervention. The myth of racial/ethnic inferiority, particularly with regard to
intelligence, provides a poignant example.
Stephen Jay Goulds Mismeasure of Man (1996) is a powerful expose of this phenomenon.
In this work, Gould meticulously uncovers how unconscious social biases regarding the
intellectual inferiority of some races (and intellectual superiority of others) undermined the
integrity of the scientific method employed by highly-respected scientists as they
15


systematically measured the capacity of skulls representing different racial/ ethnic groups.
Because their measurements were unconsciously seen and interpreted through prejudicial
lenses, their measurements only reified social biases rather than accurately accounted for the
size of the various skulls they were measuring.
Today, we know that skull size, beyond a specific threshold, does not correlate with
intelligence that it is the complexity of the synaptic connections, rather than the size of
ones head, that serves as better indicator of capacity for intelligence. This new knowledge
makes the skull measurements meaningless (in relation to what they were intending to
measure). However, at the time (early 1900s), this body of work supported racist beliefs
about the potential of persons of color and were used by those in powerful positions to justify
segregation of schools and lack of parity in the distribution of educational resources. In other
words, scientific findings were used to promulgate racist views about an entire group of
people rather than objectively to assess the capacity or potential of a given individual. The
legacy of this historical insult is felt today. Today, as in the past, inequality in education
compounds the insults of growing up in poverty insults experienced in the earliest
developmental periods, even in the womb to stifle the intellectual potential of children of
color. The very fact that this pattern has persisted and been allowed to continue for
generations has only reinforced popular notions and assumptions about the intellectual
capacity of particular demographic groups, African Americans in particular. That black kids
(particularly boys) cannot do well in school is a normalized expectation that stifles the
emergence of sufficient political will to demand social change.
Structural violence, then, refers to harm resulting from prejudice and discrimination that
remain largely unexamined and thus unconsciously accepted. Structural violence is present
any time there are differentials in power among individuals and social groups when, under
socially-just circumstances, there should be equality and parity. By operating to concentrate
disadvantage among already socially-marginalized populations, structural violence is
insidious and difficult to remediate. Moreover, to return to an earlier analogy, structural
violence like gravity pulls everything (everyone) down. Numerous studies have documented
that societies characterized by high levels of social inequality also experience relatively
poorer health outcomes (including reduced life expectancy) across socio-economic status
gradients.20 In other words, no one living in societies with high levels of social inequality
(and therefore low levels of social justice) are immune to the devastating effects of structural
violence; if s just that a very few at the top of the social hierarchy may be buffered to some
degree (psychologically and materially) by better access to social, cultural, economic and
political capital. As one observer remarked, When the social fabric thins, more affluent
people can buy their way out with private schools, guarded or gated communities, private
20 The Society and Population Health Reader: Income Inequality and Health (Kawachi, Kennedy and
Wilkinson eds. 1999) is an excellent source of some of the first studies to document empirically the
health consequences of social inequality even on the relatively wealthy.
16


social clubs and individual psychotherapy (Kutter, 1997 quoted in Kawachi, Kennedy, &
Wilkinson, 1999, p. xxi).
17


-^^1'Kedlinitfg: Aridhstitutionalized Polity Contributing to Structural Violence
.i§;:
In the 193Q$^jedlining began as'th'e practice of literally drawing a red line on a map to
^designate areas that were considered too risky for banks to invest. Later, the same practice
f/was usedtodtsagnate inner-fpgilareas with a high proportion of black and Hispanic
residents. Banks Were dissuaded from investing in these areas based on racist assumptions
about attributes of communities of color rather than factual assessments regarding the ability
,of individuals livipg in thf$&gommunities to repay loans. By the 1990s, the practice had
developed into a Hftatant institutionalized racism, with low-income whites being
- granted IO^ansthatWereJejijgd. tjgj-flftcks of the sa||p or higher socioeconomic status. The
' dififerentfaf application ofthe criteria for approving loans based on race (not economic
standing or fhl'lbility aK^alhfof how socially^unjust practices (that
reflect the prejudices ofthosenitoing major social institutions) can become a systemic,
standard mode of operation fotjpajor institutions in society.
Historically, thesepractices^tlfSfCated the pl|pf of persons of color in the United States,
by further alienating blacks^ffeher minorities^'from access to loans that would have
enabled them .to leverage ftdtft$>Wnership as a means to build overall wealth that could be
passed or^o^enerations. TljbSe practices also contributed to the overall decay of inner-city
neighborhoods, Where the tax b^b'did not support municipal services or quality schools for
thtise whorbsided within thehytifidaries. Litpjted education also meant limited
opportunitie^fortibbilitw^a^compounding the residential segregation and alienation
that redlihihg^poRcies hhd^Sfctiohalized. Abandoned, decrepit buildings became an
increasin&pM qf the landscape, exacerbating crime' including the underground economy of
drug deMt^^ft§.,of thie only viablb'wavs tq^afe money, particularly for young black
males. Over tfie course of d^^Secades, theH^realinihg (in its various forms) ensured that
the potential .pf generations of black men and women would be constrained by poverty,
Sam**? / ***' .
America's HSmeownership Gaj&$be United States .Conference of Mayors,
-^u^eth^nandnowidre^edHnihg/NewRedfmjng/Americas Homeownership Gap.

ThVmirie N5wtefs Lodnt^^ration: How th^federal government, in 1937, color-coded
thedjitiire of Syracuse. Retrieved November 11,2009, from
http^/^ra^sethenandnow.org/Redlining/HOLC Maps.htm
Hie New^emfntegy tJS'News ^id World Report, April 17,1995, Retrieved November 11,
2009, from
htto://svracusethenandnnw.org/Redlming/NewRedlining/USNewsRedliningStudy.htm
Wallace R. (1990). Urban desertification, public health and public order: planned
\stifinkage, violent death, sub^be abuse and Anas in the Bronx. Social Science anti
mge,
18


Theoretical Dimensions of Structural Violence
In an article published in 2006 titled, Political violence as moral exclusion: linking peace
psychology to feminist critical theory, authors Ofreneo and de Vela identified three
mechanisms by which violence both direct and structural are perpetuated:
1. Moral exclusion
2. Structural exclusion (or lack of access to various forms of capital), and
3. Socialization the normalization of lowered expectations regarding a particular
groups true potential (internalized by both members of the disenfranchised group
and others)
Importantly, these mechanisms, by which structural violence is woven into the fabric of
society (and our individual and collective sub-conscience), also define the psychosocial,
material, structural and cultural conditions (and implications) of structural violence. This
operationalization thus helps to promote structural violence as a theoretical framework with
testable and applied dimensions that can serve to advance our understanding of this otherwise
nebulous concept. Just as direct and structural violence are interconnected and, historically,
have been ensnared in cycles of violence both locally and globally,21 the mechanisms that
perpetuate structural violence are also mutually reinforcing and maintain a closed system of
violence that perpetuates itself and maintains the status quo. According to Ofreneo and de
Vela (2001):
Our framework for understanding violence situates it as co-created by the
social psychological process of moral exclusion, by cultural norms that
justify violence, and by economic and political hierarchies of power that
maintain it. The psychological, cultural and structural may be
conceptually analyzed independent of one another. However, we assert
that these dimensions are in essence interrelated (p. 3).
In the previous section, the role of socialization in desensitizing members of society to the
prejudices inherent in social systems (and in their own communities) was discussed. In this
section, moral and structural exclusion, as additional mechanisms that serve to perpetuate
structural violence, will be explored.
21 This insight, first derived by Galtung, is what makes the nonviolent approach to the Civil Rights
Movement, led by Dr. Martin Luther King, Jr., so very exceptional in history.
19


Moral Exclusion
Unlike direct violence, which is inflicted by individuals who are presumed to possess a
conscience, structural violence may be considered amoral because it is perpetuated by social
systems, processes and institutions that are not sentient beings with a conscience and
therefore intentionality. It is also true, however, that these social institutions, systems and
processes are permitted to continue to maintain a socially-unjust status quo due to moral
exclusion the key socio-psychological process that justifies and legitimizes the use of
violence (in any form), as well as the structural hierarchies that perpetuate violence (de
Vela and Ofreneo, 2006, 2).
According to Opotow (2001), Morals operationalize our sense of justice by identifying what
we owe to whom, whose needs, views and well-being count, and whose do not. Our morals
apply to people we value, which [also] define who is inside our scope of justice ... (p. 103).
The implication of Opotows definition is that morals are not universally-applied; rather, they
are selectively bestowed based upon implicit valuations of others worth (to our own well-
being i.e., sense of self or self-interest). By extension, the inherent value of another human
being has little to do with the very fact that they are human, but rather on their worthiness,
importance, value to us socially, materially, etc. Morals, in other words, are applied
egocentrically to promote self-interests rather than human well-being. This interpretation is
articulated by Opotow as she elucidates who comprises the morally excluded. She writes:
We see other kinds of people ... as outside our scope of justice ...
Excluded people can be hated and viewed as vermin or plague or they
can be seen as expendable non-entities. In either case, disadvantage,
hardship, and exploitation inflicted on them seems normal, acceptable,
and just as the way things are or the way they ought to be. Fairness
and deserving seem irrelevant when applied to them and harm befalling
them elicits neither remorse, outrage, nor demands for restitution ...
Many social issues and controversies, such as aid to school drop-outs,
illegal immigrants, welfare moms, people who are homeless, substance
abusers, and those infected with HIV are essentially moral debates about
who deserves public resources, and thus, ultimately, about moral
inclusion (p. 103).
In direct political violence, dehumanizing the enemy so that he/she is easier to kill or torture
is a common tactic employed by the military machinery of war. Similarly, arguments for the
selective application of human rights (including access to quality health care and education)
are bolstered by efforts to incriminate those who 1) based on racist or sexist attitudes, are
assumed to be intellectually inferior, 2) have alternative sexual identities, 3) may have
entered the United States illegally, and 4) are living in poverty. (Because the very conditions
of poverty serve to dehumanize psychologically, socially and materially, and in the minds
20


of both the poor and powerful, those living in poverty are especially vulnerable to moral
exclusion.) The following is an illustrative example taken from Scheper-Hughes (1992);
although she is immersed in an analysis of the political economy of health in Northeast
Brazil, her words could just as easily apply to the situation in the United States, particularly
for the urban poor, persons of color and those who gay identify:
Under the political ideology of favors and privileges, extended only to
those who [seemingly] behave well, human rights cannot logically be
extended to criminals and marginals, those who have broken, or who
simply live outside, the law (of God to quote those who seek to
justify bigotry towards homosexuals on religious grounds). When this
negative conception of human rights is superimposed on a very narrow
definition ofcrime that does not recognize the criminal and violent acts
of the powerful and the elite, it is easy to see how everyday violence
against [those with an alternative social status or identity] is routinized
and defended, even by some of the [disenfranchised] themselves (p.
228).
Structural Exclusion Lack of Access to Various Forms of Capital
Moral exclusion refers to the unconscious, cognitively-autonomic process of categorizing
people or demographic groups based on biases (prejudices) that permeate our sub-conscience
through the formative process of socialization. Structural exclusion, on the other hand, refers
to the limited access that morally-excluded others have to what Ofreneo and de Vela (2006)
call hierarchies of power. These hierarchies of power are embedded in all major social
institutions (e.g., corporate/ economic, government and education). By having limited access
to these loci of power locally, nationally and internationally, disenfranchised groups have few
spokespersons to represent their own interests; they have no or little influence on the
development and dissemination of public policy; and, often no platform from which to voice
alternative views regarding their social reality. They have few outlets for telling their story -
for speaking truth to power literally and figuratively. Relatively rarely have their
proverbial ladders of success extended to the top of these hierarchies. With little ability to
penetrate the hierarchies of power, there are few to serve as germs of organized resistance
(Levi, 2004, p. 83), much less as role models who can set a new standard by which members
of their social class, gender, race/ethnicity, etc. may reassess their own capabilities, value,
worth and come from a place of empowerment to identify and name the sources of their
oppression.
Structural exclusion is necessary in order to maintain the existing power structures in a
society whereby one social class or racial/ ethnic group is dominant with the masses
remaining relatively isolated from various forms of capital (economic, political, social, and
21


cultural) that are now recognized as essential to well-being in society. Economic capital
refers to financial and material assets the monetary worth, most often, of ones family.
Political capital refers to political clout the ability to influence ideology, public sentiment
and the political process. Social capital, at the interpersonal level, includes ones
connectedness to influential others who, functionally, can serve to open doors of opportunity.
Cultural capital refers to the manners and mannerisms, the speech and vocabulary, the style
of dress and quality of the fabric and materials that one possesses and that is very much
publically scrutinized because it serves as such a naked indicator of ones breeding (i.e.,
social status and class).
All of these forms of capital shape ones educate-ability, employability, sociability. All these
forms of capital serve as the social codes that communicate in no uncertain terms that you
belong with us and you do not. Those without the right (i.e., accepted) material, social
and cultural codes are not allowed entree, at least not without some resistance. Such social
resistance to integration, assimilation and accommodation is bolstered by stereotypical
assumptions and judgments that lay at the heart of moral exclusion.
Beyond the Direct and Structural Violence Dichotomy: the Violence Typology as a
Continuum
Structural violence was chosen as the theoretical framework of this thesis for two main
reasons:
1) Morbidity and mortality associated with HIV/AIDS continues to intensify among
communities of color particularly African Americans who have been intensely
impacted by structural violence for centuries in America, and
2) The development, dissemination and implementation of new antibody testing
technologies and public policies are fundamentally structural issues that affect access,
not only to information regarding ones serostatus, but also to quality health care and
other needed social services for vulnerable populations.
While structural violence (as a distinct type of violence) serves as the fulcrum of the analysis,
positioning this work within a broader theoretical context is important. In this section of
Chapter 2, an expanded typology of violence is presented that goes beyond the direct and
structural violence dichotomy. In the sequent section of this chapter, the researcher illustrates
the salience of applying structural violence to deepen our understanding of recent changes in
HFV testing technology and prevention policy, and the implications for populations at greatest
risk, by framing the discussion in terms of the social ecology of HIV risk.
22


Galtungs typology of violence leaves us with a dichotomized understanding of violence, as
presented in Christie, Wagner, and Winter (Eds. 2001, p. 9) (table reproduced here as Table
5). More recently, Philippe Bourgois (2004) has developed a continuum of violence in war
and peace, which was published in an anthology of scholarly work on violence that also
featured pieces by Nancy Scheper-Hughes (Bourgois co-editor), Michael Taussig, Michel
Foucault and Pierre Bourdieu. Bourgois continuum, presented in Table 6, expands upon
Galtungs direct (political) and structural violence constructs and incorporates the
conceptions of symbolic and everyday violence developed by Bourdieu and Scheper-Hughes,
respectively. These additional conceptions of violence will be explored below.
Table 5: Direct and Structural Violence (Christie, Wagner and Winter eds., 2001, p. 9)
Direct Violence Structural Violence
Kills people directly Kills people indirectly
Kills quickly Kills slowly
Somatic harm Somatic deprivation
Dramatic Commonplace
Personal Impersonal
Acute insult to well-being Chronic insult to well-being
Intermittent Continuous
Subject-action-object observable Subject-action-object unobservable22
Intentional and immortal Unintentional and amoral
Episodes may be prevented Inertia may be mitigated
22 In direct violence, the subject-action-object relationships are readily observable while political and
economic structures of violence are not directly observable, though their deadly results, which are
delayed and diffuse, are apparent [for example] in disproportionately high rates of infant and maternal
mortality in various pockets of [the United States and] the world (Christie, Wagner & Winter, Eds.
2001, p.9).
23


Table 6: Continuum of Violence in War and Peace (Bourgois, 2004, p.426)
Direct Political Targeted physical violence and terror administered by official authorities and those opposing it, such as military repression, police torture and armed resistance
Structural Violence Chronic, historically entrenched political-economic oppression and social inequality, ranging from exploitive international terms of trade to abusive local working conditions and high infant mortality rates
Symbolic Defined in Bourdieus (1997) work as the internalized humiliations and legitimations of inequality and hierarchy ranging from sexism and racism to intimate expressions of class power. It is exercised through cognition and misrecognition, knowledge and sentiment, with the unwitting consent of the dominated (Bourdieu 2001).
Everyday Daily practices and expressions of violence on a micro-interactional level: interpersonal, domestic and delinquent. Concept adapted from Scheper-Hughes (1992, 1996) to focus on the individual lived experience that normalizes petty brutalities and terror at the community level and creates a common sense or ethos of violence.
Symbolic and Everyday Violence in America
Institutionalized racism (see feature on redlining) is to structural violence what internalized
racism is to symbolic violence. Structural violence creates the social, political, historic and
economic conditions that prevent human beings from being able to achieve idealized (in fact,
idolized) images of health and wealth (most often portrayed through advertisements and the
mass media). Symbolic violence is the internalized self-hatred engendered (literally and
figuratively in patriarchal societies) as individuals come to understand their frustrated
attempts and inability to achieve a projected potential as a personal rather than structural
failure. According to Camara Phyllis Jones (2000), in her exposition on Levels of Racism:
A Theoretic Framework and a Gardeners Tale:
Internalized racism is defined as acceptance by members of stigmatized
races of negative messages about their own abilities and intrinsic worth.
It is characterized by their not believing in others who look like them,
and not believing in themselves. It involves accepting limitations to
one's own full humanity, including ones spectrum of dreams, ones right
to self-determination, and ones range of allowable self-expression. It
manifests as an embracing of whiteness (use of hair straighteners and
24


bleaching creams, stratification by skin tone within communities of
color, and the white mans ice is colder syndrome); self-devaluation
(racial slurs as nicknames, rejection of ancestral culture and fratricide);
and resignation, helplessness, and hopelessness (dropping out of school,
failing to vote, and engaging in risky health practices) (p. 1213, emphasis
added).
Symbolic violence, then, is the debilitating damage done to the personhood of an individual
or group of individuals who are routinely and systematically dehumanized, disempowered,
demoralized through institutionalized and internalized racism. As Nancy Scheper-Hughes so
powerfully portrayed in her epic ethnography, Death Without Weeping: The Violence of
Everyday Life in Brazil (1992), social and cultural belief systems evolve in response and
serve to normalize the conditions of structural violence and create alternative explanations or
realities regarding the origins of misery and locus of personal/ community failings. The
victims come to embody these failings, both symbolically for the larger social system and
psychosomatically. Consequently, victims of structural violence are left vulnerable to being
blamed by others and to blame themselves for the brutality that they confront on a daily basis.
Jones description of how internalized racism is manifest among African Americans parallels
Bourgois depiction of symbolic (internalized) violence among Puerto Rican crack dealers in
East Harlem (2004 and 1995). Bourgois description, however, highlights the way in which
symbolic violence confounds the debilitating oppression of structural violence by fueling the
direct violence occurring on the streets and in the home. Through his ethnographic account,
Bourgois shows how symbolic violence (violence directed against oneself and ones
community) serves to perpetuate the interpersonal violence that is so rampant in the social
spaces where ones humanity ones race and/or culture, dignity, and sense of self-worth -
are constantly battered and assaulted. He writes:
... Drug dealers, addicts and street criminals internalize their rage and
desperation, converting it into an interpersonal everyday violence that
primarily harms them and their loved ones. They direct their brutality
against themselves and their immediate community, rather than against
their structural oppression. Worse yet, they succumb to symbolic
violence by not only failing to see the structural dynamics oppressing
them, but by actually blaming themselves for their failure to achieve the
American Dream. The everyday interpersonal violence embroiling them
blinds them to the racism, economic exploitation, and iatrogenic public
policy that sets the stage for their gray zone. Instead, they are forced to
secretly suspect that they may be morally if not culturally, or worse yet,
racially inferior to the wealthy, white world, and that they thereby
deserve to be poor and to live in the segregated squalor of the inner city
(2004, p. 307 emphasis added).
25


The term gray zone23 that Bourgois used refers to the social space, created by the various
forms of violence, in which victims also become involved in perpetrating the violence. But,
instead of this secondary violence being directed toward the source of the violence itself (i.e.,
through retaliation), the violence is misdirected against oneself and ones family or
community; the fact that there is no identifiable actor in structural violence exacerbates this
phenomenon. The victims become collaborators to use Primo Levis (2004) term in the
perpetuation of violence against their own morally-excluded group. This is the gray zone in
which overt violence, spawned by intensifying social inequality, escalates primarily among
the poor, rather the between rich and poor (see Kawachi, Kennedy & Wilkinson, Eds. 1999,
p. xxvii). This is the gray zone in which drug dealing becomes one of the only viable means
of economic survival and access to the material trappings of success for young men of
color isolated in inner cities, even as this underground economy serves to fuel the epidemics
of homicide, substance abuse, imprisonment and HIV/AIDS within communities of color. It
is also in this gray zone that domestic violence occurs, as men who have been made socially
and economically-impotent by the structural violence of market forces who can no longer
fulfill the traditional role of breadwinner for their families displace their rage toward
these same families the women and children who are even more vulnerable. The social and
psychological forces that enlist victims in their own demise also serve to reinforce beliefs
regarding the moral worthlessness and pathological habitus of these communities. Together,
then, the effects of structural, symbolic and everyday violence (particularly when
overshadowed by direct, overt political violence, including police brutality) serve to create
the gray zone of false-consciousness regarding personal and public responsibility, who is
culpable and who, therefore, is deserving of human rights (protections) and public services -
including those pertaining to quality, affordable, and accessible health care.
23 This term was first developed by Primo Levi, a survivor of the Holocaust, in his descriptions of the
calculated ways that the Nazis engaged Jewish prisoners in the genocide of their own people in the
concentration camps. Levi (2004) develops the otherwise ill-defined concept as he describes the work
of the Special Squads who extracted the corpses from the gas chambers and transported them to the
crematoria, pulled gold teeth from jaws, cut womens hair, sorted the material possessions of the dead,
and disposed of their ashes. According to Levi, This institution represented an attempt to shift onto
others specifically, the victims the burden of guilt, so that they were deprived of even the solace of
innocence (p. 89). Levis essay suggests that perhaps even worse than the overt killing of innocent
people is the enlistment of them in the crime of their own demise that perhaps this is the worst, most
cruel way to destroy another human being. He writes, Conceiving and organizing the squads was
National Socialisms most demonic crime ... In fact, the existence of the squads had a meaning, a
message: We, the master race, are your destroyers, but you are no better than we are; if we so wish,
and we do so wish, we can destroy not only your bodies but also your souls, just as we have destroyed
ours (p. 89).
26


Social Ecology The Salience of Structural Violence to Health Promotion
Structural factors define the context in which people must act. The social-ecological
perspective of health promotion and prevention positions health behaviors (and the
interventions focused on changing risk behaviors) within this broader context. The social-
ecological framework elucidates how such behaviors are nested in multiple layers of factors
that can exacerbate/ ameliorate risk for HIV and, importantly, constrain/ facilitate the ability
of individuals to change behaviors that are placing them at risk (please see Figure 1, below).
This broader context is essential for understanding how individual-level health behavior
interventions (including the promotion of knowledge about ones serostatus), when promoted
as a single strategy in isolation rather than in concert with interventions designed to address
structural barriers, may not only have limited effectiveness but may actually serve to
exacerbate structural violence.
* Social stigma permeates all levels
Structural
policy, acc
exclusion,
indifferem
Structural/
Environmental
Interpersons
Community
and Social
itional drug use;
>hobia;
ition burn-out,
ig/ not knowing
tatus
Dyad norms re: violence-,
coercion, sero-sorting
Individual
Mental health,
histories of abuse,
drug use (alcohol,
methamphetamines),
self-respect, self-
efficacy, perceived
susceptibility
Figure 1: Social-Ecological Framework (Bull, personal communication, June 2008)


Earlier in this chapter, Galtungs concept of structural violence was presented in which he
defined this type of violence, in part, as the preventable or avoidable difference between a
potential state (for example, of physical, mental and emotional well-being) and the reality for
an individual or particular demographic group. The locus of structural violence emerges
when a potential reality is created for an individual through, for example, social
comparisons and messages received from the mass media or a well-meaning HIV prevention
counselor to which the individual cannot aspire, much less achieve, due to constrained life
circumstances and choices that are limited most often by poverty.24*25 Pilisuk (2001), in his
critique of globalism essentially the imposition of capitalism worldwide illustrated the
role of the mass media. He wrote, Projected images of the good life help reduce different
cultural values to the one global value of money; meanwhile, money becomes concentrated in
fewer hands (p. 151). Structural violence thus emerges out of the tension between hope
elevated and the-very-human-tendency-to-dream crushed. Because individuals are often
unaware of the structural barriers that serve to constrain their lives and prevent them from
ever achieving the good life, the dissonance between what is projected as achievable and
what the individual is actually able to achieve becomes the basis for internalized denigration,
even self-hatred Bourdieus symbolic violence. The external messages (shaped by global/
local society) come to imply the value of the individual to society and him-/ herself.
A parallel process has the potential to unfold within the context of HIV testing and
counseling. Historically, three major behavior change theories have informed HIV
counseling and testing policies and practices in the United States (these are outlined in Table
7, below). Chief among them has been the Health Belief Model. Key constructs of the
Health Belief Model that counselors attempt to promote and leverage through the HIV testing
and prevention counseling process include perceived susceptibility and perceived severity.
By fostering a sense of vulnerability to HIV and an understanding that HIV infection has dire
consequences, the counselor hopes to motivate the client to take the necessary steps to change
the behaviors placing him/ her at risk for HIV. The theory predicts that motivation will lead
logically to behavioral intention, which will in turn lead to behavior change, particularly if
the individual has high self-efficacy confidence that he/ she can perform a positive behavior
change regardless of the circumstances. (These last constructs, behavioral intention and self-
efficacy, are cornerstones of the Theory of Reasoned Action and Social Cognitive Theory,
respectively.)
24 Poverty is defined as the experience of relative deprivation scarcity amidst affluence [locally
and/or globally] (Pilisuk 2001 in Christie, Wagner, & Winter Eds.)
25 Such a dialectic paradox was at the root of Karl Marxs critique of capitalism. He theorized that
capitalism would produce wealth (for a very few) even as it consumed the masses of laborers in
deepening gradients of poverty. The exploitation suffered by laborers would enable owners to amass
profits even as it alienated them from the means of production and, therefore, the hope of escaping
their impoverished life circumstances.
28


As an individual-level behavior change theory, the Health Belief Model, in particular, fails to
account for the multitude of factors operating outside the individuals locus of control.
Individual-level health behavior change theories are predicated on the Western ideal of
individual self-determination and control over ones destiny. Self-determination, as a cultural
ideal, shapes our expectations of ourselves and others, regardless of cultural, social, economic
and political capital.
The HIV prevention counselor, when working with HIV-negative individuals who are at
high-risk for infection, is undoubtedly working with the intention to prevent harm to their
client. He/ she, not unlike the client, may be unaware of the paralysis created by structural
violence. It follows, then, that if the counselor fails to explore the context of a particular
clients risk (i.e., life) context, the prevention messages delivered and risk reduction plan
created will not be responsive to that context and may, therefore, serve to create expectations
that the client cannot possibly meet. Structural violence emerges out of the disconnect
between messages and expectations regarding what the client should do and what he/she
can do within the constraints of his/ her life circumstances.
It follows then that the intervention of ensuring that individuals know their serostatus may
actually serve to compound feelings of helplessness, hopelessness, anger, despondency
(rather than promote empowerment to change risk behaviors) if not offered within a
supportive context that ensures that newly-identified, HIV-positive individuals are linked to
needed support services, not the least of which include medical care. The fatalism that might
otherwise result can foster self-destructive behaviors that put the individual and those he/ she
comes into contact with at greater risk for physical harm (including HIV infection). This is
an example of the cyclical relationship between structural and physical violence; the system
of violence, as these examples collectively suggest, operates at multiple levels, from the
individual and interpersonal to the global (Christie, Wagner and Winter, 2001, p. 12).
29


Table 7: Key Individual-Level Behavior Change Theories
Theory Key Construct Definitions
Health Belief Model Perceived susceptibility Perception regarding personal vulnerability
Perceived severity Perception that infection is a serious condition
Perceived benefits of performing behavior Factors (beliefs, perceptions, social norms, etc.) that help individuals feel that change is desirable
Perceived barriers to performing behavior Factors (beliefs, perceptions, social norms, etc.) that keep individuals from changing
Social Cognitive Theory Outcome expectations Expectations regarding what will occur as a result of a behavior
Self-efficacy Confidence that I can perform a specific behavior regardless of the circumstances
Theory of Reasoned Action Behavior intention Most determinant of behavior
Attitude toward behavior Shaped by ones beliefs regarding the outcomes of the behavior and the value of those outcomes for the individual
Subjective norm Shaped by perceptions of what important others think/ feel about the behavior and inherent motivations to meet the expectations of others
Conclusion
For Galtung, analyses of structural violence are necessarily more oriented toward
understanding the impacts of the violence on the subjects or its victims, rather than the
perpetrator. The researcher, however, argues that while there may be no single identifiable
actor per se causing structural violence, it is possible to elucidate the mechanisms by which
forms of structural violence become embedded in society. Furthermore, as with direct
violence, it is only in understanding the relationship between the perpetrator! s) and the
victim(s) that we can achieve a more insightful understanding of the violence itself one that
may be effectively leveraged to redress and prevent the harms resulting from the violence in
the future. With the present thesis, although the focus was on understanding the
consequences of recent changes in HIV testing technology and federal guidelines for the use
of this new technology among populations at greatest risk for HIV, those policies how they
30


were created and their implementation promoted are also salient aspects of the analysis.
Table 9, presents the relationship between policy and structural violence, on the one hand,
and social justice the absence of moral exclusion on the other.
31


Ameliorates structural violence
Policy Public policy (guidelines, legislation, laws)
Institutional policy (the policies that guide how
institutions operate, including the processes by which public policy is created and implemented)
f
/
A
/ \
Facilitates access to basic
health & human\services,
such quality health care
(particularly preventive
health care), education,
housing, employment',
facilitates access to \
information (through, for
example, language access)
Upholds and protects \
human, civil and
constitutional rights
Helps ensure the equitable /
, distribution of public worjts
infrastructure, such as safe,
reliable public ,
transportation j
Seeks to redress pasf harms
(resulting from, fo/
example, racism)/
V
i
Promotes ideals
of social equality and justice
Fails to/respond to the life
circumstances, of
individuals and\
communities that are most
vulnerable in society
Flinders the ability of
professionals serving these
communities to do their
work effectively in order to
reduce morbidity and \
mortality \
Fails to promote equitable
distribution of social goods
and information, such as
basic health and human
services and public works
infrastructure /
F^ils to address pasl harms
(for example, by Hot
enacting policies that
effectively address health
and other types of
disparities)
I
Perpetuates the social, economic, political
forces that give rise to structural violence
Figure 2: Relationship between Policy and Structural Violence/ Social Justice
32
Exacerbates structural violence


CHAPTER3
THE RESURGENCE OF THE HIV/AIDS EPIDEMIC: THE EPIDEMIOLOGICAL
CONTEXT OF RAPID HIV TESTING
In order to understand any epidemic's propagation and society's response, it
must be seen in the particular social context in which it penetrates the
population and takes control.
Quinn 1997
This chapter provides an overview of current epidemiologic trends with respect to the
HIV/AIDS epidemic. Data presented here highlight the disproportionate representation of
vulnerable social groups, such as gay men, racial/ethnic minorities, youth and women among
HIV/ AIDS cases both in Colorado and nationally. This chapter, thus, provides the basis for a
critical examination of recent shifts in HIV prevention policy, with structural violence serving
as the theoretical framework for deciphering the implications for populations at greatest risk
of HIV infection.
The Resurgence of the Epidemic among Men Who Have Sex with Men
According to the CDC, During 1999-2001, in the 25 states that had HIV reporting, the
number of persons who had HIV infection newly diagnosed increased 14% among MSM and
10% among heterosexuals (2003a). From 2001- 2005, the number of HIV/AIDS diagnoses
among MSM (including MSM who inject drugs) increased 13% (CDC, 2007b). In
Colorado, according a Colorado Department of Public Health and Environment (CDPHE)
report, the number of prevalent MSM cases increased by 21% from 1999 to 2003, while the
prevalence of HIV among MSM/IDU increased 12% (2004, p. 20). Recent increases in HIV
prevalence occurred in a period during which rapid HIV testing technology was becoming
available and may, therefore, reflect an increase in testing among individuals at increased or
heightened risk for HIV, as well as increases in actual incidence of HIV. This section will
focus specifically on how trends in HIV and STD incidence, as well as correlates of risk,
have changed in recent years among MSM, after dramatic declines in response to AIDS in the
early-to-mid 1980s.
Consider the following statistics reported by Wolitski et al. (2001):
An estimated 365,000 to 535,000 MSM in the United States are infected
with HIV. [MSM] represent more than half of all persons living with HIV
and approximately 70% of HIV-infected men. Given that only 5% to 7%
of American men have had sex with another man during adulthood, these
figures are overwhelming (p. 883).
33


Today, MSM still account the majority of new HIV/AIDS diagnoses, both in Colorado and
nationally. About a quarter of MSM surveyed by the National HIV Behavioral Surveillance
(NHBS) system in 5 large U.S. cities with the highest established prevalence were found to
be positive; importantly, nearly half (48%) of these HIV-positive men were unaware of their
infection (CDC, 2005b). Catania et al. (2001) note that, HIV prevalence levels of U.S.
urban MSM are similar to those for sub-Saharan Africa, where seven countries have
estimated adult HIV prevalence levels of 14% to 25% (e.g., Malawi, Zimbabwe) (p. 911).
And, as in Africa, MSM in the U.S. are still dying of AIDS. In 2005, an estimated 7,293
MSM died of AIDS (5,929 MSM and 1,364 MSM who inject drugs) despite the promise of
HIV treatments (CDC, 2007b). By the end of 2005, nearly a quarter of a million MSM
(219,517) were living with AIDS (ibid).
Estimated HIV Diagnoses, by Risk (MSM)
Note: Data torn 25 states that hate requied V reporting since 1
Source: Centers for Disease Control and Prevention. (2004). HIV Prevention in the Third
Decade. Chapter 4: Specific Populations: How Are They Affected? Retrieved March 6, 2005,
from http://www.cdc.gov/hiv/resources/reports/hiv3rddecade/pdf/chapter4.pdf
Figure 3: Estimated HIV Diagnoses Among MSM 1994 2003
Data available from STD prevalence studies and behavioral risk factor surveillance
corroborate increased engagement in high-risk behaviors among MSM the group that has
34


historically been most impacted by the HIV/AIDS epidemic. MSM have increasingly
reported soliciting sex partners from anonymous sources such as the Internet, bathhouses and
through commercial sex workers; in addition, MSM have reported increased numbers of
casual sex partners and increased engagement in unprotected anal sex with partners whose
HIV serostatus was unknown or discordant (Wolitski et al., 2001; Catania et al., 2001; Stall et
al., 2000).
Sexually transmitted infections serve as epidemiologic markers for sexual risk behaviors.
Since 1997, the CDC has reported large outbreaks of primary and secondary syphilis among
MSM who were co-infected with HIV data that suggest that HIV-infected MSM continue to
engage in high-risk sexual behavior and, perhaps, in greater numbers than in the recent past.
Specifically, the CDC reported in February 2001 that, In outbreaks in King County,
Washington; Chicago, Illinois; and, southern California, 20%-73% of MSM with syphilis
also had HIV infection. Substantial increases in syphilis among MSM also have been
reported in other U.S. cities (CDC, 2001a). CDPHE documented in a 2004 report that,
Syphilis cases among MSM began to appear in Colorado in 2000 and reached a peak in
2002 (p. 30). Sixty-eight percent of the cases were identified in men co-infected with HIV.
The report stated that, Over half of the cases were associated with anonymous and casual
sex in bathhouses and/or arranged over the Internet (ibid).26
It is well known that syphilitic ulcers facilitate the transmission of HIV. Recent evidence
suggests that syphilis infection is associated with higher viral loads in HIV co-infected MSM
(Buchacz et al., 2004). There is also concern that syphilitic ulcers may be slower to heal in
HIV-infected men (Mertz et al., 1998, p. 1065). Such factors enhance the likelihood of
transmitting HIV.
Increased incidence of urethral and rectal gonorrhea has also been observed among MSM in
the United States. Catania et al. (2001) report that, Rectal gonorrhea rates among MSM
declined substantially in the 1980s but [nearly doubled in three years in the early-to-mid
1990s] from 12% in 1993 to 23.5% in 1996 (p<.001; p. 907). More recently, in 2004, 20%
of MSM participating in the Gonococcal Isolate Surveillance Project (GISP) were found to be
positive for gonorrhea. According to Fox et al. (2001), increases in gonococcal urethritis
among MSM occurred in the context of declining overall gonorrhea rates until 1998 (p. 963).
The authors continue, linking increased incidence of gonorrhea with increased rates of unsafe
sexual behaviors. Documenting trends observed through GISP, the authors report that:
26 In the Denver Metropolitan Area, counseling and testing staff who conduct rapid HIV testing in
bathhouses have returned to collecting blood samples through venipuncture so that they can also test
men for syphilis; such testing for syphilis had declined dramatically with the introduction of rapid HIV
testing and the simplified sample collection (fingerstick) technique involved.
35


Local investigations of the increases in gonorrhea among MSM, [observed]
in [the study sites of] Portland, San Francisco, and Seattle in 1997, found that
many cases were linked to attendance at selected nightclubs and bathhouses
and to sexual activity with anonymous partners (p. 963).
The CDC (1998b) reported that, Persons with STDs, including genital ulcer disease and
nonulcerative STD, have a twofold to fivefold increased risk for HIV infection. Both the
presence of STDs and the sexual risk behaviors that underlie them can facilitate the
transmission of HIV a phenomenon referred to as epidemiological synergy (CDC, 1998b. p.
2).
Epidemiologic trends in Colorado parallel those observed nationally. The following are a
few highlights from a CDPHE report, titled HIV & AIDS in Colorado: Colorado's
Epidemiologic Profile of HIV and AIDS Cases Reported through September 2001:
The overwhelming majority (78.9%) of cases of STD/HIV co-infection were among
men who have sex with men. Only 5.7% of HIV/STD co-infected cases were
attributed to heterosexual contact (p. 39).
The number of reported cases of STDs in individuals infected with HIV remains
small but has more than doubled (21 cases in 1990 compared to 51 cases in 2000) in
the last 11 years (p. 39).
Among MSM, the proportion diagnosed with gonorrhea [remained] stable at 6.7% -
6.1% between 1990 and 1995, but then doubled to 12.6% in 2000. At the same time,
gonorrhea among men [who have] sex with women reached a peak of 14.8% in 1992
and then declined to 6.9% in 2000 (p. 49).
While the proportion of visits at which gonorrhea was diagnosed among MSM
compared to men [who have] sex with women was significantly lower in 1990, the
proportion was significantly higher in 2000 (p. 49).
Such shifts in epidemiologic trends, both in Colorado and nationally, reveal a diminished
self-perception of risk among MSM both of transmitting and acquiring HIV.27 Several
hypotheses have been put forth in the literature to explain increased engagement in high-risk
behaviors among MSM in the mid-to-late 1990s following significant declines in the 1980s.
A consistent observation made in published research concerns the increased incidence of
STDs and engagement in high-risk sexual behavior among MSM, the primary risk group for
HIV infection, following the introduction of highly active antiretroviral therapy (HAART) in
1996. Researchers such as Scheer et al. (2001) postulate that reduced morbidity and
improved quality of life associated with HAART has contributed to these changes. In a study
published in The Lancet, the authors reported that AIDS patients treated with HAART had a
27 Enhancing ones self-perception of risk is a primary aim of client-centered prevention counseling.
36


fourfold increased risk of developing an STD (hazard ratio 4.10; 95% Cl 2.84 5.94). The
authors state:
One possible reason that HAART is associated with developing an STD is that people on
such treatment are likely to feel better and have an increased interest in sex, which lent
support to our finding that a higher CD4 count at the time of AIDS diagnosis (a marker of
better health) was also associated with increased risk of acquiring an STD after [an] AIDS
[diagnosis] (Scheer et al., p. 433).
The authors continue, Our finding that rates of STDs among people with AIDS increased
each year [after 1995] despite an overall decrease in STDs in San Francisco [~ the study site -
-] strongly suggests that HAART or some other factor associated with HIV/AIDS explains
this rise in STDs among people with AIDS (Scheer et al., p. 434).
Data available in Colorado support the research findings of Scheer et al. Specifically,
CDPHE reported that ... Sexual risk behaviors are quite common among persons with HIV
infection in care ... Persons who are healthier (i.e., those who do not have an AIDS
diagnosis) ... are [among those who are] more likely to engage in such behaviors (2002, p.
51). Such findings challenge part of the rationale underlying CDCs serostatus approach to
fighting the epidemic, which has emphasized research that suggests that HIV positive
individuals, particularly those in treatment, engage in sustained positive behavior change.
Scheer et al. point out that HIV-positive patients who are being treated with HAART may
appear healthy (i.e., uninfected) to potential sex partners, which may lead others to assume
that HAART patients are HIV negative or otherwise uninfectious. Attempts to assess others
serostatus based on how they look, and to partner with others based on seroconcordance a
practice referred to as serosorting is akin to playing Russian Roulette as anti-retroviral
therapy has increased HIV prevalence by helping positive individuals live longer. Yet, Stall
et al. (2000) describe serosorting as a culturally-mediated harm-reduction strategy. Stall et al.
state:
A prevention strategy that gay men appear to have developed over time is to
take a more harm reduction approach to their sexual encounters by ...
assessing partner characteristics before deciding how much risk to take (e.g.,
assessing how much pre-seminal fluid appears to be present, deciding that if
he looks healthy, he must be HIV-negative or at least have an
undetectable viral load) [p. S109].
Scheer et al. also highlight the perception that exists (among the infected and uninfected,
alike) that AIDS patients receiving HAART are less infectious or noninfectious. Yet, these
patients can, in fact, transmit different and perhaps even drug-resistant strains of HIV to
partners (Butt & Nandwani, 2001, p. 1533), rendering serosorting (even among HIV-positive
37


men) far from a harm-reduction strategy. Furthermore, because co-infection with an STD has
been shown to increase genital HIV viral loads, HAART patients who contract an STD may
still have a higher likelihood of unwittingly transmitting HIV to others.
Reflecting on a review of three similar studies conducted in Australia, the United Kingdom
and the United States, Stall et al. (2000) note that data paint a fairly consistent picture,
suggesting that optimism regarding the efficacy of HIV combination treatments and a
decreased worry about HIV infection may indeed be associated with sexual risk-taking, at
least among HIV-negative gay men (p. SI06). However, the authors go on to make the
point that:
Co-infection of HIV and STD may increase the likelihood of transmission of
HIV to others through increased viral replication, increased viral shedding,
and increased frequency of genital ulceration as a portal for viral excretion.
Therefore, increases in STD among HIV-infected MSM may also increase
HIV transmission even in the absence of increases in risk behavior among
the HIV uninfected. (Stall et al., 2000, p. SI06).
Researchers have suggested that AIDS burnout may be at least partially responsible for the
increased engagement in high-risk sexual behaviors observed among relatively older MSM
(CDC, 2002b; Wolitski et al., 2001, p. 884). Much as repeated exposure to violence in the
media may stifle reactions to actual episodes of violence that erupt in neighborhoods and
communities, HIV/AIDS education campaigns and prevention messages may now have a
blunted effect on a cohort of gay men who have dealt with the deadly threat of AIDS since
the early-to-mid 1980s. Stall et al. (2000) went so far as to suggest that AIDS may be
perceived among MSM simply as yet another of the dangers of life, in addition to
homophobia, anti-gay violence and social alienation (p, SI09). Due to the pleasure or
reinforcement value of unprotected sex (Stall et al., 2000, p. SI 04), sexual risk behaviors
have consistently been shown to be highly resistant to change. It is very likely that
individuals who are faced with the ongoing need to maintain safe sexual practices over a long
period indeed, over the remainder of their lives will experience relapse at some point -
both in terms of their acceptance of this fate and, consequently, their commitment to safe sex
practices (Wolitski, 2001, p. 884). Within this context, MSM may be particularly susceptible
to perceptions that HAART changes the stakes of unsafe sex.
Increased rates of high-risk sexual activity have also been documented in a number of studies
among young MSM. One such study, reviewed by Stall et al. (2000), surveyed men sampled
at gay bars in 16 U.S. cities (n=1989). A key study finding was that, Men aged 25 years and
younger were significantly more likely than men older than 25 years to report having engaged
in unprotected anal intercourse in the past two months (38% compared to 30%) (p, SI03).
In a review of another study that documented an increase in unprotected anal intercourse,
reviewers noted that, The most pronounced decline in condom use occurred among men
38


aged 26-29 years, whose rate of unprotected anal intercourse increased from 32% in 1994 to
42% in 1997 (p, SI02). Wolitski et al. cite a study that documented an even more dramatic
increase in unprotected anal sex among young MSM: from 37% in 1993-1994 to 50% in
1996-1997 (p. 884).
Nationally, the Young Mens Survey, conducted by the CDC, found increasing prevalence
and incidence of HIV among young MSM (15-22 years of age) across the two consecutive
phases of the study (1994-1998 and 1998-2000). Specifically, the average HIV prevalence
across the seven U.S. cities in which young MSM were surveyed was 7.2% in Phase 1 and
13% in Phase 2; the estimated average incidence was 2.6% and 4.4%, respectively. HIV
prevalence and incidence was highest among racial/ ethnic minority (especially black) MSM
in their 20s. In Colorado, young MSM age 20 to 29 are overrepresented in the epidemic,
accounting for 16% of the male population but 29% of recent HIV diagnoses (CDPHE, 2004.
p. 25). The state health department has also reported that HIV-positive MSM under the age
of 30 were also more likely to have had more than 30 sexual partners in the past 5 years.
Specifically, 40% of HIV-positive MSM 20- 24 years of age, and 31% of HIV-positive
MSM 25- 29 years of age had 30 or more sexual partners in the past 5 years, [compared to]
17% of HIV-positive MSM 40- 49 years of age and 15% of HIV-positive MSM over 50 years
of age (CDPHE, 2004, p. 28).
Such findings may indicate that a younger generation of MSM, who came out after the
unfolding of the AIDS epidemic in the 1980s and during the era of HAART, may feel
relatively less vulnerable to HIV infection. Consequently, relatively younger MSM may
experience a diminished sense of perceived risk with regard to unprotected sexual activity.
Stall et al. note that, Numerous studies of gay men of all ages have found younger age to be
associated with greater risk taking (p. SI03).
Increases in behaviors that place MSM at heightened risk for HIV cannot be blamed
necessarily on a youthful sense of invulnerability or prevention burn-out, however. As one
key informant explained during an interview, being gay and young does not, in and of itself,
place someone at risk. Stigma, discrimination, social alienation, a history of sexual abuse,
and associated mental health challenges, low self-esteem, and drug and alcohol abuse create a
constellation of risk factors that confound risk for HIV. Drug use, in particular, is
significantly associated with HIV seroconversion in MSM regardless of age.
Citing statistics emerging from a study conducted by the CDC in collaboration with the San
Francisco Department of Public Health, the National Alliance of State and Territorial AIDS
Directors (NASTAD) and the National Coalition of STD Directors (NCSD) reported in
November 2004 that:
Compared to non-users, crystal meth users were more than twice as likely to
be HIV infected, 1.7 times more likely to test positive for gonorrhea, 1.9
39


times more likely to test positive for Chlamydia and 4.9 times more likely to
be diagnosed with syphilis. Crystal meth users also reported a median of
four sexual partners over the four-week period prior to a clinic visit
compared to two partners reported by non-users. This study suggests that
meth use plays an important role in the transmission of HIV and STDs
(NASTAD & NCSD, 2004).
Moreover, the MSM population often uses methamphetamines in combination with poppers
to lower inhibitions and enhance sexual experiences. One study estimated that the
combination of methamphetamine and popper use increased the risk of contracting HIV
threefold (Plankey et al., 2007). A counselor who was interviewed as part of the thesis
research reported that clients who typically had high-risk sexual encounters lasting a few
minutes were reportedly engaging in the same behavior over the course of hours while high
on crystal meth. However, these clients did not necessarily perceive that drug use had
dramatically affected their level of risk.
The use of methamphetamine or crystal meth (meth) has increased dramatically among MSM
in recent years. For example, data coming out of New York City suggested that rates of meth
use had increased from 5% to 25% among gay and bisexual men in the early 1990s to as
much as 62% among gay or bisexual male party/club drug users in recent years (Center for
HIV/AIDS Education Studies and Training (CHEST) reported in Crisis among Gay Men:
Crystal Methamphetamine Use Linked to Rising HIV and STD Rates, NASTAD and NCSD
2004). CHEST researchers also noted that 45% of meth users in the study were men of color
(ibid). Given that users report that meth enhances feelings of self-esteem, and low self-
esteem has been linked to sexual risk taking particularly for black MSM (see, for example,
NASTAD Issue Brief No. 3, May 2008), methamphetamine use is an important barrier to
stemming the epidemic among this one of the hardest hit demographic populations in the
U.S. A recent study in five major U.S. cities found that 46% of Black MSM [participants]
were infected with HIV, compared to 21% of white MSM and 17% of Latino MSM.
Knowledge of HIV status among those already infected was also very low, particularly
among Black MSM (Kaiser Family Foundation HIV/AIDS Policy Fact Sheet, 2008, p. 2).
Despite these challenges, not one of CDCs 49 targeted, evidence-based interventions is
specifically designed to address the prevention needs of methamphetamine users (Kaiser
Daily HIV/AIDS Report, May 13, 2008, Retrieved May 16, 2008, from,
http.7/www.kaisemetwork.org/dailv reports/rep index.cfm?DR ID=52090). This is
particularly ironic given that methamphetamine use undermines the potential benefits of
antiretroviral therapy, yet the biomedical paradigm of diagnosis and treatment serves as the
foundation of CDCs new policy agenda. NASTAD and NCSD summarized the ways in
which meth use comprise this agenda:
40


The use of crystal meth and other drugs affects the ability of persons living
with HIV infection to adhere to antiretroviral therapy, likely resulting in
increased viral loads and possible susceptibility to illness. Adherence
failures ultimately cause increases in viral replication and an increased
potential for transmission of the virus, as well as drug resistant mutated
strains of HIV. Research also strongly suggests that the drug can adversely
interact with HIV medications and possibly even cause death (NASTAD &
NCSD, 2004).
This body of research thus suggests that methamphetamine use increases risk for HIV
through a number of pathways: 1) by reducing inhibitions that increase the frequency and
duration of high-risk sexual behaviors, 2) by increasing the prevalence of HIV and STDS in a
specific, defined population, and 3) by rendering ineffective the benefits of HAART therapy
- an effect that also serves to increase viral loads among HIV-positive individuals.
Given the important role of local substance abuse treatment providers in supporting the
development of comprehensive, coordinated efforts to address methamphetamine use among
populations at greatest risk for HIV, it is also ironic that the Substance Abuse and Mental
Health Services Administration (SAMHSA) has reportedly actively discouraged such local
providers from integrating HIV prevention counseling as a component of harm-reduction
interventions an important finding emerging from the thesis research that will be discussed
again in Chapter 4.
The Disproportionate Increase of HIV Infection and AIDS Cases among
Racial/ Ethnic Minorities
In 2005, MSM accounted for 71% of all HIV infections among male adults and adolescents28
(CDC, 2007b). This is an astounding figure given that less than 10% of male adults and
adolescents identify themselves as MSM (ibid). While MSM are grossly overrepresented as a
risk group, non-Hispanic blacks are similarly disproportionately affected as a demographic
group, as are Hispanics/ Latinos. Of the estimated 184,991 adult and adolescent HIV
infections diagnosed during 2001-2005, more (51%) occurred among blacks than among all
other racial/ethnic populations combined (CDC, 2006c). In 2006, Blacks accounted for
49% of all HIV/AIDS cases diagnosed (CDC, 2008a, p. 6), although they comprised only
13% of the population in the 33 states with confidential, name-based reporting. That same
year, the HIV diagnosis rate for American Blacks was 8 times the rate for whites (ibid).
Moreover, CDC reported at the end of March 2008:
28 Based on data available from 33 states with confidential, name-based reporting.
41


African American males continue to bear the greatest burden of HIV infection. In 2006, the
HIV diagnosis rate for all black males in 33 states (119.1 per 100,000 population) was the
highest of any group more than 7 times that for white males (16.7), more than twice the
rate for Hispanic males (50.9), and more than twice the rate for black females (56.2). The
diagnosis rate for Hispanic males was approximately 3 times that for white males (ibid).
In the 2008 surveillance report, CDC also described the degree to which women of color
were severely and disproportionately impacted by HIV infection. The report stated, In
2006, the HIV diagnosis rate for black females (56.2) was more than 19 times the rate for
white females (2.9). The rate for Hispanic women was 15.1, more than 5 times that for white
females (ibid).
The Kaiser Family Foundation, in a HIV/AIDS Policy Fact Sheet released May 2008,
summarized the daunting population statistics in this way:
Black Americans have been disproportionately affected by HIV/AIDS since
the epidemics beginning, and that disparity has deepened over time. Blacks
account for more HIV and AIDS cases, people estimated to be living with
AIDS, and HIV-related deaths than any other racial/ethnic group in the US
... Moreover, Blacks with HIV/AIDS may face greater barriers to accessing
care than their white counterparts (Kaiser Family Foundation, 2008, p. 1).
The fact sheet also noted specific trends in AIDS cases among Black Americans. The
Foundation reported that, The share of AIDS diagnoses accounted for by Blacks has
[increased] over time, rising from 25% of cases diagnosed in 1985 to 49% in 2006; in recent
years, this share has remained relatively stable (ibid). Highlighting the disparity in AIDS
cases between Blacks and whites in this country, the report noted that, the number of Black
Americans living with AIDS increased by 27% between 2002 and 2006, compared to a 19%
increase among whites.
42


603 U.S. Case Rate: 14.9
Black White Latino AslafVPaclfic American
Islander indlan/Alaska
Native
Figure 4: AIDS Case Rate per 100,000 Population, by Race/Ethnicity, for Adults/
Adolescents, 2006
The disproportionate representation of American Blacks and other communities of color
among AIDS cases reflects, not only disparities in HIV transmission rates, but also more
explicit structural factors that limit access to prevention services and medical care. For
example, the Kaiser Family Foundation Fact Sheet cited data from the HIV Cost and Services
Utilization Study (HCSUS) the only nationally representative study of people with
HIV/AIDS receiving regular or ongoing medical care for HIV infection (2008, p. 2).29
Summarizing key findings from the HCSUS report, the Fact Sheet stated:
Blacks fared more poorly on several important measures of access and
quality than whites ... Blacks were more likely to report postponing medical
care because they lacked transportation, were too sick to go to the doctor, or
had other competing needs ... Analysis of data from 25 states between 1994
and 2000 found that Blacks were less likely than whites to have private
coverage and more likely to be covered by Medicaid, or uninsured, at the
time of their HIV diagnosis (ibid).
The Changing Racial/Ethnic Composition of the Epidemic in Colorado
In a report published in 2006 titled, HIV & AIDS in Colorado: Integrated Epidemiologic
Profile of HIV and AIDS Prevention and Care Planning reported through June 2004, the
Colorado Department of Public Health and Environment examined changes in the racial/
29 Please note that the primacy source was not referenced here as updated data/reports could not be
accessed. The Kaiser Family Foundation Fact Sheet citation indicated that the information from
HCSUS was obtained via personal communication.
43


ethnic distribution of the epidemic in Colorado. Comparing persons presumed to have been
infected early in the epidemic with those thought to have been more recently infected, the
data reflected an epidemic that is increasingly impacting communities of color. Specifically,
while whites accounted for 83% of AIDS cases between 1985 and 1989, they represented
59% of the HIV cases identified more recently (between 1999 and 2003). Blacks, on the
other hand, represented only 7% of AIDS cases between 1985 and 1989 but accounted for
16% of persons more recently identified as infected with HIV. While the percentage of
blacks nearly doubled, the percentage of Hispanics represented in Colorados epidemic has
nearly tripled. Specifically, Hispanics accounted for 9% of the early AIDS cases and 23% of
the more recently identified HIV cases.
In Colorado, blacks represent only about 4% of the overall population, but 14% of HIV/A1DS
cases. Nationally, during 2001-2005, the disparity for blacks was even greater, as highlighted
above: although adult and adolescent blacks made up only 12% of the population in the 33
states with long-term, confidential, name-based reporting, they accounted for just over half
(51%) of new HIV/AIDS diagnoses (CDC, 2006c). Population figures for Hispanics in
Colorado and the U.S. were more similar. Hispanics comprise an estimated 19% of the
general population in Colorado and made up 15% of those infected with HIV. Nationally,
these figures are 13% and 18.2%, respectively for roughly the same period. Table 8, below,
summarizes these racial/ethnic disparities in the HIV/AIDS epidemic for the state and
nationally.
Table 8: Racial and Ethnic Disparities in the HIV/AIDS Epidemic: Colorado and U.S.
Compared
Colorado 1999-2003 (unless otherwise noted) United States 2001-2005
Race/Ethnicity % of pop %of HIV/AIDS Cases % of pop % of HIV/AIDS cases
White 73% 69% 72% 29.3%
Non-Hispanic black 4% 14% (34% of HIV infected were foreign-born)* 13% 50.5%
Hispanic/Latino 19% 21% (in 2006)** (28% of HIV infected were foreign-bom)* 13% 18.2%
* Non-citizen immigrants are estimated to account for 6.5% of Colorados population
** Down from 22% in 2004 (National Council of La Raza statistics taken from Minorities
Fighting HIV Odds, The Denver Post. Retrieved May 14, 2007, from
http://test.denverpost.com/portlet/article/html/fragments/print article.isp?articleID=5889743)
44


Source (unless otherwise noted): Colorado Department of Public Health and Environment.
HIV & AIDS in Colorado: Integrated Epidemiologic Profile of HIV and AIDS Prevention
and Care Planning reported through June 2004. Retrieved October 1, 2006, from
http://www.cdphe.state.co.us/dc/HIVandSTD/HIV STDSurv/profile3.pdf
While HIV/AIDS remains a predominantly white epidemic in Colorado, with whites
representing 69% of all HIV/AIDS cases identified between 1999 and 2003, population rates
of HIV/AIDS cases for blacks are significantly higher than for other racial/ethnic groups.
Specifically, the population rate per 100,000 for blacks in 2003 was 20.6 (down from 24.5 in
1999). The 2003 figure is four times the population rate for whites (4.7). Even greater
disparities exist in the population rates of AIDS cases, with the population rate for AIDS
cases among blacks (29.2) nearly 6 times that of whites (5.3). Blacks were the only racial
group in Colorado to have experienced an increase in the population rate of AIDS cases
during the period 1999 through 2003 (from 22.8 per 100,000 to 29.2 per 100,000 a 28%
increase). Nationally and in Colorado, blacks experienced a decrease in HIV diagnosis rates
from 1999 to 2003; however, such rates remained much higher than the rates for all other
racial/ ethnic populations. Table 9, below, summarizes these data. Because blacks who are
seropositive tend to be identified later in the course of their infection than other racial/ ethnic
groups, and tend to receive substandard care when engaged in medical intervention, higher
rates of HIV infection suggest that disparities will continue to exist in AIDS-related
morbidity and mortality for this population.
Table 9: Population rates of HIV and AIDS cases by racial group in Colorado
Race/Ethnicity New HIV cases (rates per 100,000 in 2003) AIDS cases (rates per 100,000 in 2003)
White 4.7 (increased from 3.6 in 1999) 5.3 (from 6.0 a 12% decrease)
Non-Hispanic black 20.6** (from 24.5 in 1999-a 16% decrease) 29.2 (from 22.8 a 28% increase)
Hispanic 6.4*** (from 9.4 in 1999 a 32% decrease) 8.4 (from 13.3-a 37% decrease)
** Four times that of whites.
*** Nearly one and a half times that of whites.
Source: Colorado Department of Public Health and Environment. HIV & AIDS in
Colorado: Integrated Epidemiologic Profile of HIV and AIDS Prevention and Care Planning
reported through June 2004. Retrieved October 1, 2006, from
http://www.cdphe.state.co.us/dc/HIVandSTD/HIV STDSurv/profile3.pdf
45


Clearly, both in Colorado and nationally, HIV is more prevalent among communities of
color. As the next sections will explore the structural conditions that exacerbate risk for these
more vulnerable populations, which serve to constrain individual agency and choices, and
contribute to syndemics the interconnected epidemics of poverty, violence and substance
abuse, as well as the destructive psychosocial forces of internalized racism and internalized
homophobia. The discussion begins with examination of aspects of the Down Low (DL)
culture as a window into the ways that these micro and macro social dynamics converge to
impact risk for HIV at the individual level. Isolation emerges as a key theme throughout this
discussion.
The Social Dynamics of the Down Low Culture and HIV Risk in Black Communities
According to the CDC, By transmission category, most HIV/AIDS diagnoses of Black male
adults and adolescents were classified as MSM (51.7%), followed by high-risk heterosexual
contact (25.2%)... Most HIV/AIDS diagnoses among Black female adults and adolescents
were classified as high-risk heterosexual contact (80.4%) ... (CDC, 2006c). Having sex
with a man is, thus, the most important risk factor for contracting HIV for both Black men
and women. This section will examine ways that the down low (DL) culture contributes to
HIV transmission in the Black community. Specifically, the social dynamics that push Black
men who have sex with men underground and that have spawned a subculture that
perpetuates high-risk behavior and the transmission of HIV, among both Black men and
women, will be explored.
An in-depth, qualitative needs assessment conducted by the Colorado Department of Public
Health and Environment document that Black MSM experience reverse discrimination by the
gay community, as well as discrimination in their own black communities. According to the
state health department report in which qualitative findings were summarized:
Some African American MSM reported a lack of a strong, ongoing sense of
both community and self-worth ... that could affect levels of risk. They
suggested that the wider African American community had rendered HIV
and its impact on the community invisible, which made community-level
prevention efforts difficult. Latino MSM made a similar observation,
lamenting that prominent community leaders had failed to mention
HIV/AIDS as an issue affecting Latinos ... Latino and African American
MSM also expressed feeling a lack of inclusion in the broader MSM
community, at times experiencing discrimination and stereotyping similar to
that found within the wider white-dominated society ... Some African
American MSM stated that a high degree of shame was attached to HIV
disease and that stigma kept people from testing or seeking treatment if they
were infected. Both the African American and Latino communities were
46


said to have a relatively high percentage of MSM who do not gay identify, in
part due to a widespread lack of acceptance of homosexuality in these
communities (CDPHE, 2004, pp. 32-33).
Within the black community, there has been a long-standing sentiment against airing dirty
laundry, which has led some to minimize or suppress issues that are deemed less than
flattering to present to a society in which racism remains a powerful yet covert force. Not
wanting to fuel myths that have been used to justify racist policies, Black leaders have been
reticent to discuss HIV/AIDS openly. As Denizet-Lewis, the author of an article appearing in
The Urban Spectrum in October 2003 that provided a rare, in-depth look into the dual lives of
Black men on the Down Low, stated, ... From womanizing rappers to moralizing preachers,
much of the black community views homosexuality as a curse against a race with too many
strikes against it (Urban Spectrum, 2003, p. 29). According to Cathy Cohen, author of The
Boundaries of Blackness: AIDS and the Breakdown of Black Politics, who was quoted in the
Spectrum article:
There was a real sense in black communities that you had to put your best
face forward in order to prove that you deserve equal rights and equal status,
and that face didnt include gays and IV drug users with AIDS ... Its been a
very slow process for the Black leadership in America to own up to this
disease (p. 33).
The tension of protecting ones own while avoiding controversy may account for why there
are both those who feel that the Black community is intrinsically homophobic and those who
feel that there is a social space within the community for those who have alternative sexual
identities. After all, as one key informant interviewed by Denizet-Lewis explained, Where
else could we go? This key informant continued:
The reason that so many young Black men arent so cavalier about
announcing their sexual orientation is because we need our families. We
need our families because of economic reasons, because of racism, because
of a million reasons. Its the idea that Black people have to stick together,
and if theres the slightest possibility that coming out could disrupt that, guys
wont do it (Urban Spectrum, 2003, p. 32).
While white MSM often move to urban centers where they can assimilate into existing gay
communities and thus escape to some degree the social isolation and discrimination they
experience in their home towns, Black men dont often have such opportunities because of
the racism they experience. According to John Peterson, a professor of psychology at
Georgia State University who specializes in AIDS research among black men (and who is
also quoted in the Spectrum article), [Black MSM are] stuck ... The choice becomes, do I
want to be discriminated against at home for my sexuality, or do I want to move away and be
47


discriminated against for my skin color? (Urban Spectrum, 2003, p. 32). Denizet-Lewis
reflects, That may help explain why many of the black men who are openly gay tend to be
more educated, have more money, and generally have a greater sense of security (Urban
Spectrum, 2003, p. 29).
In May 2008, the National Alliance of State and Territorial AIDS Directors published
findings from targeted interviews with representatives of health departments and local
community based organizations in selected states. The goal was to detail state-level and
community-level responses to the HIV crisis among [Black men who have sex with men
(BMSM)], as well as facilitators and barriers to effective prevention targeting this
population (NASTAD, 2008, p. 2). The report featuring key findings from the study
emphasized that the social isolation experienced by BMSM not only exacerbated risk-taking
behaviors (by driving these men to seek sexual partners on the internet, for example) but also
made venue-based community outreach ineffective. According to one key informant
interviewed as part of the NASTAD study, A lot of Black gay men are hidden, which
means that they stay home. They do house parties ... they dont go to gay bars, for example.
They stay more hidden. The NASTAD report also noted that, Even when BMSM-oriented
venues (namely nightclubs and bars) were present in a community, participants noted that
they frequently changed locations or went out of business (2008, p. 5). The authors
concluded, Lack of gay-affirming venues and an organized community in which BMSM can
feel comfortable impeded the ability to mount effective responses to the epidemic (ibid).
When these factors, as well as the concentration of poverty in the black community, are
considered together, the extreme marginalization and powerless faced by BMSM becomes
more clear. Such social alienation has contributed to the establishment of an alternative
subculture, with its own clandestine codes and rules of engagement. Labeling yourself as
DL is a way to disassociate from everything white and upper class, says George Ayala, the
director of education for AIDS Project Los Angeles. And that, he says, is a way for DL
men to assert some power (Denizet-Lewis, 2003, p. 32). Such defiance is captured well in
the following statement by James L. King, a publishing executive who speaks about his
former DL life, I sleep with men, but I am not bisexual, and I am certainly not gay. / am not
going to your clinics. I am not going to get tested. I assure you that none of the brothers on
the Down Low are paying the least bit of attention to what you say' (p. 34, emphasis added).
While these are the words of only one man, national statistics suggest that they reflect a much
more widely-held sentiment among men who have been shamed into silence (and inaction).
In the U.S., Black (and Hispanic) men are more likely to be diagnosed at a later stage of
infection, suggesting that they are not accessing testing or health care services through
which HIV infection could be diagnosed at an earlier stage (CDC, 2007a, p. 4).
It is likely that Kings sentiments (quoted above) were influenced, in part, by a deep-seated
mistrust of social institutions. At the heart of such distrust (of public health authorities in
particular) is the Tuskegee study and a history of abuse and neglect at the hands of authorities
48


representing such institutions. Research by Quinn (1997) has documented the beliefs held by
many blacks that, HIV was created in a laboratory in order to infect black people, that AZT
is a plot to poison them, that condom distribution campaigns are a scheme to reduce the
number of black babies, and that needle distribution programs are a plot to encourage drug
abuse (p. S7).
Quinn states that distrust a key factor associated with the fear of genocide also can
manifest itself [as a ] lack of willingness either to be tested for HIV or participate in available
treatments for HIV disease (ibid). The researcher continued, stating that:
Belief in genocide, accompanied by distrust of government reports on AIDS,
may be contributing to continuing transmission of HIV by maintaining a
social environment steeped in denial and contributing to lack of social
support for use of condoms, needle exchange programs, and participation in
clinical trials (p. S9).
Quinn also suggested that urban legends (such as AIDS as a form of genocide) serve as an
outlet for the expression of frustration and anger because they acknowledge social injustice.
Such social dynamics within the Black community are often not well understood or, if
understood, not effectively acted upon by public health professionals. Consequently, DL men
have been ineffectively reached by social marketing campaigns, venue-based outreach efforts
and prevention messages. These factors have operated synergistically, leaving Black men
who have sex with men (and their partners both male and female alike) highly susceptible
to HIV. Consider these statistics:
The National HIV Behavioral Surveillance study, conducted in five large U.S. cities
between June 2004 and April 2005, found that HIV prevalence among black MSM
(46%) was more than twice that [of] white (21%) and Hispanic (17%) MSM (CDC,
2007b). Of the HIV-positive black MSM, 67% were unaware of their serostatus
(CDC, 2005b).
In nine U.S. cities participating in the MSM Prevalence Monitoring Project, the
rates of STDs and HIV varied by race and ethnicity but tended to be highest among
black and Hispanic MSM (CDC, 2007b).
Studies of HIV infection among young [MSM] in the mid-to-late 1990s revealed
high rates of HIV prevalence, incidence, and unrecognized HIV infection,
particularly among young Black MSM (CDC, 2005b).
In a recent CDC study of young MSM, 77% of those who tested HIV-positive
mistakenly believed that they were not infected. Young Black MSM ... were more
likely to be unaware of their infection approximately 9 of 10 young black MSM
compared to 6 of 10 young white MSM (CDC, 2007b).
49


In 2005, the CDC reported that, Compared with MSM who were HIV negative,
proportionately more MSM with unrecognized infections had not been tested during
the preceding year because they were afraid of learning they had HIV (34% versus
68%; p<0.0001) and were worried others would find out the result (14% versus 35%;
p<0.0001) (CDC, 2005b). About a third MSM with unrecognized HIV infection
reported not being tested in the previous year because they were afraid of losing their
job, insurance or family.
In interviews with HIV-positive male clients, among whom most were African
American and Latinos, [researchers] found that 87% of the MSM also report having
sex with women (Lane et al., 2004, p. 327).
The phenomenon of black and Hispanic men clandestinely engaging in high-risk sex with
men and often times continuing long-term relationships with unknowing female partners is an
important contributing factor to the dramatic increases seen in heterosexual transmission
among women of color and HIV/AIDS cases reported among those with no identified risk.
While injection drug use has historically been the most important risk factor for contracting
HIV among women of color, today, heterosexual contact is the fastest growing risk category
for minority women. In the 33 states with long-term, confidential, name-based reporting,
females accounted for 26% of HIV/AIDS cases diagnosed during 2005; nearly two-thirds
(66%) of these cases were identified among black women, 74% of whom were infected
through heterosexual transmission (CDC, 2006b, pp. 2-3).
An examination of individual health behaviors does not adequately explain the
disproportionate representation of women of color in the HIV/AIDS epidemic. According to
Lane et al. (2004), in an article titled, Structural Violence and Racial Disparity in HIV
Transmission, For individual-level risks to give rise to [such] wide disparities in
heterosexual HIV infection in women, the prevalence of sexual risk-taking would have to
differ significantly by race and ethnicity (p. 321). Yet, numerous studies have found only
modest differences among racial/ethnic groups in womens sexual risk behavior, with the
age of sexual initiation being the main difference (p. 321). Lane and her colleagues have
proposed structural pathways to explain the disproportionate degree to which heterosexual
HIV transmission affects women in poor and underserved communities in the U.S. (ibid).
The pathways include increased community rates of infection and concurrent partnerships.
This ecological context of HIV vulnerability is examined in detail below.
Increased Community Rates of Infection and Concurrent Relationships: The Ecological
Context of Black Womens Structured Vulnerability to HIV
CDC reported in 2007 (based on a literature review) that high rates of HIV infection for
Black MSM may be partly attributable to a high prevalence of STDs that facilitate HIV
transmission (CDC, 2007a). The analysis by Lane and her colleagues highlighted three
50


structural conditions that contribute to the increased incidence and prevalence of sexually
transmitted diseases in Black communities. The factors elucidated by Lane et al., which
increase community rates of STDs, include disproportionate rates of incarceration, lack of
access to clinical services, and constrained social networks. Structural violence underlies
each of these factors. Examples include racial profiling that contributes to high population
rates of incarceration, particularly among young Black males; cuts in federal funding of
public programs; and, redlining policies that have contributed to residential segregation and
stifled access to a major financial asset (a home), which families often use to leverage and
amass economic wealth.
In prison, sex is one of the only ways to assert ones power. Lane et al. summarize statistics
from a number of studies and report that an estimated 7% to 12% of the inmates across
several studies report being raped while incarcerated; inmates who had been raped reported
that it occurred an average of nine times during their incarceration ... Inmates may also
barter sex for drugs or other items. The Federal Bureau of Prisons provides a conservative
estimate of 30% of federal inmates engaging in homosexual activity while incarcerated
(Lane et al., 2004, p. 324). Lane et al. also report that:
In 1990, [CDC] conducted a study, which was not released to the public, on
HIV seroconversion in the Illinois State Correction facility. The magazine
Mother Jones, through [the] Freedom of Information Act, obtained and
published the results of this study. The results indicate a rate of 3 HIV
seroconversions per 1000 person-years, which is 10 times greater than the
state non-inmate rate during that time period (Lane et al., 2004, p. 323).
Despite the information available on the degree to which inmates are sexually active behind
bars and the rates of HIV seroconversion in federal and state prisons, less than 1% of all jails
and prisons in the U.S. allow inmates access to condoms (p. 324). Inmates also do not
receive routine HIV antibody screening.30 Once these men return to the community, they
may unknowingly spread HIV to female partners. The public health implications of prisoners
not knowing their HIV status at the time of their release was captured with the following
statistics cited by Lane and colleagues, Among HIV-infected African American women
living in the South who had fewer than 10 lifetime sexual partners and could identify no high-
risk behavior, one quarter reported that one of their last three sexual partners had been
incarcerated for more than 24 hours (ibid).
30 Historically, this has been a prickly issue for policy makers. On the one hand, routine HIV testing in
prisons leads to questions about what to do with prisoners once their HIV status is known, especially
given that doing anything that would effectively mark these prisoners as HIV positive might leave
them even more vulnerable to violence and harm while incarcerated. Yet, lack of knowledge of HIV
status upon release leaves future sexual partners vulnerable.
51


Social and geographic isolation have been identified as factors, in addition to a low male-to-
female ratio,31 that serves to constrain womens choices for partners. Residential segregation,
few opportunities for upward mobility, and gangs that control neighborhood turf all serve to
constrict the social networks of men and women. Lane et al. argue that constrained choices
rob women of their power within relationships, for example, to demand monogamy or to
negotiate condom use. Once an STD (including HIV) is introduced into such constrained
social networks, it can spread quickly, resulting in high incidence and prevalence precisely
what epidemiologic trends suggest has occurred. Black men and women, alike, have less
room for error based on the higher prevalence of HIV within the community (NASTAD,
2008, p. 5).
Lack of opportunities for economic viability (available to many whites through access to
inherited wealth and other resources, such as social and cultural capital, and job
opportunities) are not equitably available, particularly to young Black men, as documented in
ethnographies such Aint No Makin It: Aspirations and Attainment in a Low-Income
Neighborhood (McLeod, 1995) and In Search of Respect: Selling Crack in El Barrio
(Bourgois, 1995). Consequently, there is little incentive to form stable, conjugal bonds that
involve significant and long-term financial investments, such as that of raising children.
Again, the findings of Lane et al. indicate that Black women in search of a committed
relationship under such circumstances feel less empowered to negotiate safer sex.
Furthermore, women of color may not know what constitutes safer sex. A key informant
interviewed for the present study who works extensively with Black women discussed the
lack of knowledge that even professional Black women have regarding the transmission of
HIV. During her interview, the counselor shared:
Im in several womens groups that are primarily African American women.
And, these are women that are professionals, teachers. Theyre full-time
employed ... And, some of the questions they ask ... Like, I was in a group
last week and there were still questions about how HIV is spread. There
were questions about cuts. Where does a cut have to be? And, Does the
blood have to mix? ... They asked a question about... If a man is having
sex with a woman, whos more susceptible to getting it? ... And, these are
people that I respect and are professional people. So, Im thinking, They
dont know. And so, if they dont know and they have the resources to know
and to [access the information,] imagine the people who have a higher risk
who dont have those resources. How are they getting it?
31 A low male-to-female sex ratio has been found to be associated with the presence of concurrent
partnerships with different people by individuals. Anthropologists have long observed that a low
male-to-female sex ratio was associated with polygamy and demographers have found it to be
associated with female-headed households (Lane et al., 2004, p. 326).
52


The counselor continued, To me, to get caught up in the different cuts and whether hes on
the top or whether shes on the bottom or were standing up, to me thats not important. To
me, its, What are you doing to protect yourself? So, I spend a lot of time just with my own
female friends talking about stuff.
This finding suggests that Black women have not been effectively reached with prevention
information that might better equip them to protect themselves. In the absence of correct
information, misinformation has continued to perpetuate myths and ignorance regarding
transmission. Ironically, CDC officials have stated publicly that, High levels
of knowledge about HIV result in a decreased need for pre-test counseling, a statement
given as part of the rationale for no longer requiring that pretest counseling be offered to
patients/clients in health care settings where counseling has been identified as a perceived
barrier to offering HIV testing (see CDC Update, page 13, of the Draft Record of Proceedings
of the CDC/HRSA Advisory Committee on HIV and STD Prevention and Treatment,
November 3- 4, 2006, Washington, DC). While this issue (and the lack of evidence base to
support it) will be presented in detail in Chapter 4, it warrants emphasizing here within that
context of a discussion highlighting structural factors that exacerbate risk at the individual
and community levels. The CDC officials statement provides a poignant example of
structural violence specifically, the ways in which public policy, when not based in
evidence, can serve to worsen the conditions that structure risk for HIV.
The dearth of information reaching Black women may help explain thesis data, presented in
Chapter 6, regarding the impact of universal HIV screening in a Denver-area STD clinic.
Specifically, data collected for the thesis research indicated that married women of color were
more often being identified as HIV positive as a result of these efforts. In addition, even busy
emergency department physicians interviewed were ardently committed to providing post-test
counseling at the time of diagnosis (rather than referring out for this service as the CDC has
suggested), recognizing that populations at greatest risk often lack even basic information
regarding HIV.
In addition to lacking access to information, communities of color, who are more likely to
reside in crumbling inner cities in poverty, are less likely to have access to basic human
services, including STD clinic services. Furthermore, they are less likely to have access to a
safe, reliable means of transportation to reach clinics outside their communities. These issues
are exacerbated by the fact that persons of color often lack access to employer-sponsored
health insurance. The skyrocketing costs of individual insurance plans mean that African
Americans and other minorities often must receive health care services from public clinics or,
as a last resort, emergency departments. Fiscal cuts often result in public STD clinics having
restricted hours and long waiting lines. Lane and colleagues describe one such STD clinic in
Onondaga County in New York State that provides services only 11 hours per week.
53


A survey conducted by this STD clinic found that patients often had to wait seven to 10 days
from the onset of symptoms before receiving effective treatment; many continued to have
unprotected sex while waiting to be treated, thus exposing other people to STDs. Many of
the patients reported that they went to local emergency departments seeking treatment and
were given written prescriptions [for medication they] could not afford (p. 325).
Such barriers to timely treatment aggravate ecological circumstances that increase individual
risk for STDs and HIV. The authors note that if an individual with an untreated STD is
exposed to HIV, the risk of [transmitting] the virus is increased two-to-five-fold (p. 325).
They continue, stating that there is also evidence that expanding access to STD services may
reduce the rate of heterosexual HIV seroconversion (ibid). Given the important role of
STDs in facilitating the transmission of HIV and the relatively low cost of expanding access
to STD treatment and prevention services (when compared to the cost of expanding HIV
testing programs and the ongoing medical care that HIV-infected individuals require), it
seems ironic that CDC has not promoted HIV testing with a concomitant requirement to
expand access to STD clinic services. Over a decade ago (in 1997), the Advisory Committee
for HIV and STD Prevention (ACHSP), which provides oversight and guidance to CDC in
the prevention of HIV, made the following recommendations:
Early detection and treatment of curable STDs should become a major, explicit
component of comprehensive HIV prevention programs at national, state and local
levels.
In areas where STDs that facilitate HIV transmission are prevalent, screening and
treatment programs should be expanded.
HIV and STD prevention programs in the United States, together with private and
public sector partners, should take joint responsibility for implementing this strategy
(CDC, 1998, p. 1).
To date (June 1, 2008), the researcher has found no evidence of significant progress in these
areas. In fact, a CDC Press Release, distributed in March 2008, unveiled findings of a
nationally-representative CDC study that found that:
One in four (26%) young women between the ages of 14 and 19 in the
United States or 3.2 million teenage girls is infected with at least one of
the most common sexually transmitted diseases (human papillomavirus
(HPV)), Chlamydia, herpes simplex virus, and trichomoniasis) ... The study
also finds that African-American teenage girls were most severely affected.
Nearly half of the young African-American women (48%) were infected with
an STD, compared to 20% of young white women (CDC, Press Release
issued March 11, 2008, p. 1).
54


Conclusion
This chapter has highlighted structural conditions that have changed the social ecology or
landscape of risk for particular demographic and risk groups. This, in turn, has given rise to
the current epidemiologic context in which innovations in HIV antibody testing technology
and CDCs HIV prevention policy initiatives have been unfolding in recent years. The
remainder of this dissertation is focused on exploring the implications of changes in
prevention policy and testing technology for stemming the epidemic among socially-
vulnerable groups, with structural violence continuing to provide the conceptual framework
guiding the analysis.
55


CHAPTER4
HOW SOUND IS CDCS RESPONSE TO A CHANGING EPIDEMIC?
A LOOK AT THE EVIDENCE
As often as not, ideology and politics, not support for what works, have
driven allocation of HIV prevention dollars. The most recent iteration of the
HIV prevention strategy of the US Centers for Disease Control and
Prevention, announced in 2003, epitomizes such a disparity between
ideology versus evidence-based programmatic planning ...
Cohen, Wu and Farley (2005)
This chapter provides an overview of the ways in which counseling and testing guidelines,
issued by the CDC, have evolved over time in response to a) changing paradigms and social
sensibilities shaping policy-makers orientation toward prevention policy, b) changing testing
technologies, and c) thwarted attempts to stem the epidemic. The analysis of federal HIV
testing and counseling recommendations places recent shifts in public policies and funding
priorities in an historical context. The latter part of the chapter examines the evidence-base
for the CDCs most recent prevention initiatives, public and fiscal policy gaps, and the
implications of the prevention-for-positives campaign for those at greatest risk.
Historical Analysis of HIV Prevention Policy in the United States: 1985 Present
The Centers for Disease Control and Prevention published its first set of guidelines regarding
the use of antibody screening to curtail the spread of HIV in 1985 the year the antibody test
first became available. This initial guidance was followed a year later by guidelines that
emphasized the voluntary nature of testing and the importance of maintaining confidential
records. In 1987, CDC published guidelines that focused on reducing barriers to voluntary
testing related to disclosing personal information. Subsequent guidelines were not published
until 1993 and 1994, when the two-session, pre- and posttest counseling model that was to
become the standard in the field was introduced. These last guidelines highlighted the
efficacy of client-centered prevention counseling and the negotiated development of a
personalized risk reduction plan tailored to the specific risks, life circumstances, and
readiness of a particular client.
In an important departure from guidelines published in the 1990s, which emphasized the two-
session, pre- and posttest counseling format, the CDC, in its 2001 Recommendations,
indicated that effective client-centered prevention counseling could be conducted in a single
session. The guidance stated, These guidelines avoid using the terms pretest and posttest
56


counseling to underscore that prevention counseling is a risk-reduction process that might
involve only one or >1 session (CDC, 2001b, p. 14).
Until the publication of the revised guidelines for counseling and testing in 2001, CDC had
required that HIV prevention counseling be offered to all clients/ patients receiving HIV
antibody testing, regardless of their level of assessed risk. In its revised guidance, CDC
promoted the effective targeting of client-centered prevention counseling services to those at
increased or heightened risk in order to support efforts to identify those of unknown
serostatus who might be unwittingly spreading the virus. Specifically, CDC recommended
that:
... Providers consider three factors in determining whether to recommend
HIV CTR to all clients [of a particular setting] or to target only selected
clients: type of setting, HIV prevalence of the setting [e.g., >1%], and
behavioral and clinical HIV risk of individual clients in the setting (CDC,
2001b, pp. 7-8).
In terms of the type of setting, CDC distinguished settings that serve populations at risk, such
as STD clinics and clinics serving MSM, and those that serve individuals at risk, such as
private physicians offices in low prevalence areas. The Recommendations specified that
settings serving populations at increased or heightened risk should routinely recommend HIV
CTR. In other settings, individual risk can be ascertained through risk screening (CDC,
2001b). Risk screening involves an initial assessment of the degree to which an individual
may be at risk of acquiring HIV based on self-reported risk behaviors and clinical indicators.
Examples of behavioral risk factors include unprotected sexual intercourse with multiple
partners, needle sharing, or exposure to a partner at increased or heightened risk of HIV
infection. Symptoms that serve as clinical indications of HIV infection include opportunistic
infections.
The 2001 revised guidelines included algorithms for determining when to couple testing with
client-centered prevention counseling. In settings serving populations at increased behavioral
or clinical risk for HIV infection (such as STD clinics), CDC recommended that HIV
prevention counseling be provided to all clients within the context of routine HIV testing (see
Figure 5, below). In other settings, risk screening would determine whether HIV prevention
counseling would be provided with HIV testing, with those deemed to be relatively low risk
receiving only information (the associated flowchart is depicted in Figure 6). The 2001
guidelines, therefore, sought to address the time and resource intensive provision of client-
centered prevention counseling to clients visiting health care settings that are not principally
devoted to addressing the needs of persons at increased or heightened risk of infection.
57


Client Population
HIV prevention counseling and testing
with informed consent and information
Test (-) Test (+)
Referral to medical, prevention, and Referral to medical, prevention, and
support services, if applicable support services
Figure 5: Example of Counseling, Testing and Referral In Settings Serving Populations At
Increased Behavioral or Clinical HIV Risk (CDC, 2001b, p. 11)
Figure 6: Example of HIV Counseling, Testing, and Referral In Low Prevalence Settings
(CDC, 2001b, p. 12)
58


In yet another departure from the past, the 2001 Recommendations highlighted the need for
some degree of flexibility in terms of obtaining informed consent, specifically by permitting
consent to be obtained separately from or in combination with informed consent for other
medical procedures. The guidelines specifically stated, however, that, if consent for HIV
testing is combined with consent for other tests or procedures, the inclusion of HIV testing
should be specifically discussed with the client (CDC, 2001b, p. 6).
By streamlining informed consent and prevention counseling requirements, the 2001
guidelines for HIV counseling, testing and referral foreshadowed a critical policy shift one
that sought to routinize HIV antibody testing by 1) advocating for universal, opt-out
screening whereby HIV antibody testing would become part of the standard of care in health
care settings, and 2) relaxing prevention counseling requirements in settings where such
requirements were a perceived barrier to conducting HIV screening of patient populations.
With regard to the latter, decoupling the testing and counseling processes was thought to
enhance the feasibility of conducting screening in an expanded array of settings -
specifically, medical settings where lack of training and time for conducting client-centered
prevention counseling had been identified as major barriers to performing CTR. CDC
postulated that the opt-out policy, for its part, would increase the uptake of testing within
specific clinical settings because separate, written consent would no longer be required in
order for HIV antibody testing to be conducted.32 Streamlined consent and counseling
processes were to become key features of CDCs Advancing HIV Prevention Initiative in
2003 the goal of which was to ensure that as many people as possible were tested and knew
their serostatus, as well as the revised recommendations for HIV testing in health care
settings, published three years later in 2006.
While the 2001 Recommendations were intended to apply to health care and community-
based settings alike, the 2006 Recommendations were focused more narrowly on expanding
access to HIV testing in health care settings, specifically. Health care settings was a broadly-
defined category, however, and included the following types of facilities:
Emergency departments
Urgent-care clinics
Inpatient services
STD clinics
TB clinics
Substance abuse treatment clinics
Other public health clinics
Community clinics
32 The policy objective of expanding access to HIV antibody testing was also well supported by the
increased uptake of HIV antibody testing seen in the era of second-generation rapid HIV testing
technologies.
59


Correctional health-care facilities
Primary care settings
The 2006 guidelines for HIV testing in health care settings were the most sweeping in
history. Armed with the statistic that 40,000 or more individuals continue to become infected
with HIV each year in the United States, CDC declared that risk screening had failed to
identify those at increased behavioral risk in order to target these individuals effectively for
CTR. The federal agency recommended that all patients between the ages of 13 and 64 in
health care settings with an established seroprevalence of >1% should be tested for antibodies
to HIV, as should all patients seeking treatment for TB and all patients seeking treatment for
STDs during each visit for a new complaint, regardless of known or suspected risk factors.
The CDC also advocated that patients/ clients and their prospective sex partners be screened
before initiating a new sexual relationship. Finally, CDC recommended annual screening for
all persons likely to be at high risk for HIV and specified the following populations:
1DU and their sex partners
Persons who exchange sex for money or drugs
Sex partners of HIV-infected persons
MSM
. Heterosexual persons who themselves or whose sex partners have had more than one
sex partner since their last test33
In order to achieve such broad-based testing of patient populations, the 2006 guidelines
recommended that pretest counseling requirements be omitted in settings where they had
been identified as a perceived barrier to HIV antibody testing in the past (such as emergency
departments). They also recommended that post-test counseling be made available only to
preliminary positive patients, to facilitate linkage to care. Therefore, under this most recent
guidance, seronegative patients could potentially receive no prevention counseling, regardless
of their risk. In other words, whereas the 2001 Recommendations emphasized effective
targeting of prevention counseling to those assessed to be at increased or heightened risk for
HIV regardless of their serostatus, the 2006 guidance made it possible (at least in certain
settings) to provide client-centered prevention counseling (which includes the development of
a risk reduction plan) only to those identified as already infected.
In Spring 2007, a CDC official involved with disseminating technical information regarding
the new guidance was interviewed. He/she was asked to clarify the current recommendations
regarding the provision of client-centered prevention counseling what seropositive versus -
negative patients would receive. An excerpt from that interview follows:
33 In Colorado a state that participates in name-based reporting, the names of preliminary positive
clients/patients are reported. In other words, anyone with a reactive rapid HIV test is reported,
regardless of their confirmed status.
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Respondent: ... its my personal feeling that all patients that go through an
STD clinic need to receive some kind of prevention counseling ... ideally,
any patient going through an STD clinic should receive some kind of
counseling about risk reduction ... And the guidelines dont contradict that.
Interviewer: Okay.
Respondent: Remember, were talking about routine testing. And when
youre working in an, like lets say youre working in a bathhouse, or youre
working in a gay clinic, for example, where you have potentially high-risk
populations. Well, in those situations you would want to be doing prevention
counseling. It would make sense. But were talking about removing, the
whole concept of removing a requirement for counseling was to remove a
barrier. In other words, if a test would not even be offered if the requirement
for [counseling] was in place.
Interviewer: I see.
Respondent: ... When it serves as a barrier in a routine setting where
individuals, where you would not normally offer testing, I think its a good
thing to do, to not require it then.
Interviewer: I wonder ... if providers are receiving that message clearly.
Because if Im recalling correctly, in the revised recommendations, in the
part thats talking about the research and the literature what the literature
suggests there is a portion, a paragraph, a sentence that kind of questions
the effectiveness of prevention counseling. So it seems like there might be a
little bit of a mixed message in those revised guidelines about, that there
might be some settings where prevention counseling is indeed very valuable
and critical.
Respondent: ... The bottom line, though, is that we make very clear in the
summary or the introduction that [the revised recommendations] are not
meant to, that they are not meant to undermine already existing
recommendations ... Theyre just meant to increase the number of people
who might get tested ... If youre already doing testing and counseling in
settings where it makes sense, where youve got individuals who are at risk
of HIV infection, then it makes sense.
Interviewer: Right, okay. That is very, very helpful.
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Respondent: Yeah. Now, Im not surprised that, I mean, we knew and I
anticipated that there would be some confusion about this. And, that there ...
in fact is. So Im not at all surprised by your question. Because, I hear it. I
mean, we hear these questions a lot. And, I think we probably needed to do a
better job of explaining that... Now, I will say that we have tried to
communicate this to our program managers in our HIV prevention programs.
And I think that the official, the HIV/AIDS coordinators, directors of each of
the state health departments -1 think they pretty much understand that. That,
Im fairly certain of. Because weve spent a lot of time talking with them
about this.
One such program manager in Colorado was also interviewed for the present study. When
asked about prevention counseling requirements under the 2006 Recommendations, the state
health department official stated:
For the new guidance, the emphasis is really on you do very little with the
negatives. There really is no requirement for them to get any kind of
[counseling]. It really is made for medical settings where were just trying to
test as many people as possible. So, theres really a de-emphasis on the
negatives ...
So, while the CDC officials comments seem to suggest that the 2006 Recommendations are
more similar to those issued in 2001, which sought to streamline counseling in order to make
testing more feasible to implement in a broader array of settings, the state health department
official understood CDCs present position as one that focused resources on preliminary
positive individuals to the exclusion of addressing the prevention (and other) needs of
negative patients/clients, regardless of their risk. The CDC and state health department
official agree at least in one regard that the 2006 guidelines for HIV testing in health care
settings are focused on promoting strategies that will ensure that as many people as possible
are tested.
The funding associated with federal initiatives often clarifies policymakers true priorities and
policy intentions. During a key informant interview conducted in Spring 2006, the manager
of a local STD clinic in the Denver Metropolitan Area spoke, with great candor, about not
having the financial and, therefore, counseling and prevention case management resources
available to address the prevention needs of high-risk HIV negative STD clinic patients
(despite what the CDC official stated about the importance of providing counseling to all
clients/patients of settings serving populations at risk). The STD clinic manager shared the
following scenario regarding what tended to occur with high-risk negatives in his/ her clinic
within the Prevention for Positives policy context:
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We had issues with funding so that our prevention counselors, even though
we know this person is incredibly high risk and they are ready to change their
behavior and want to talk to someone about that, the funding says that X
counselors can only talk to positives because it is prevention for positives
monies. Thats really frustrating. Where do you send people who dont have
it yet? But if they had it, they could get some counseling and some
resources. So it doesnt make sense to us as providers. We need to do both.
A key informant interview conducted with the director of a local substance abuse research
and treatment facility, also conducted in Spring 2006, confirmed that local providers are
under a great deal of pressure. Only after the digital recorder had been turned off, the key
informant was willing to disclose that his/her organization had been dissuaded by a federal
funding agency from including client-centered prevention counseling related to HIV as part
of the risk reduction component of the study protocol conducted with subjects. He/she also
shared that federal funding was becoming more and more contingent upon demonstrating a
seroprevalence of at least 1% among the population served. At least one other organization
represented in interview data (a local STD clinic) had had a similar experience of funding
being contingent upon finding more HIV positive individuals.
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Table 10: Evolution of HIV Antibody Testing Recommendations34
Date Use Rationale/Comment
1985 Blood banks Protect blood supply All donors screened; positives referred for counseling
1987 First HIV counseling and testing guidelines to support routine counseling and testing of persons seeking STD treatment Prevention strategy reflecting implications of positive HIV test, associated risk behaviors
1993 Expanded voluntary testing to inpatient and outpatient hospital settings with HIV seroprevalence rate of >1%, AIDS rate of >1/1000 discharges Seroprevalence-driven prevention and early detection; promoted routine, voluntary, confidential counseling and testing for all patients 15-54 years of age; encouraged documentation of informed consent
1994 Prevention counseling guidelines Formalized prevention intent of HIV testing in the form of client-centered counseling approach
1995 Voluntary testing of all pregnant women Response to demonstrated efficacy of antiretroviral treatment in reducing perinatal transmission
2001 Serostatus Approach to Fighting the Epidemic (SAFE) Diagnosing all HIV-infected persons, linking them to medical and prevention services, helping them adhere to treatment regimens, and supporting them in adopting and sustaining HIV risk reduction behavior. Goal was to reduce by half the number of individuals newly infected with HIV by 2006 Enhancing perinatal transmission prevention Broaden routine testing for all patients in high prevalence health care settings; maintain risk- screening in low prevalence settings Introduced flexibility in pretest counseling and informed consent to eliminate real/ perceived barriers Touted as coupling a traditional infectious disease control focus on the infected with behavioral interventions
34 A key informant provided this table, which the researcher subsequently revised to emphasize aspects
of recent policy initiatives.
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Table 10(cont.): Evolution of HIV Antibody Testing Recommendations
Date Use Rationale/Comment
2003 Advancing HIV Prevention Initiative: Testing as part of routine care in traditional medical settings (involves the decoupling of testing from counseling) New models for testing outside medical settings (emphasis placed on expanded use of rapid HIV testing) Prevention for positives (reaching HIV-positive individuals of known serostatus who are not in care, providing prevention case management and counseling, bolstering partner notification and referral services) Further decrease mother-to-child transmission Introduced when it became apparent CDC would not reach its goal of reducing by half the number of new HIV infections identified annually by the end of 2005 HIV testing managed same as other voluntary diagnostic and screening tests (end of exceptionalism) Advocated streamlined approaches to prevention counseling and written informed consent to overcome barriers
2006 Routine voluntary HIV screening in all health care settings Consistent with general medical practice, screening criteria Promote early detection Response to diminished effectiveness of risk- based testing
Client-Centered Prevention Counseling: The Efficacy Debate
In its 2001 Recommendations, CDC stated that the following counseling techniques are
necessary for high-quality counseling (CDC, 2001b, p. 20) specifically, client-centered
prevention counseling that led to positive behavior change among individuals at increased or
heightened risk of HIV:
Keep the session focused on HIV risk reduction;
Include an in-depth, personalized risk assessment (sometimes referred to as
enhancing self-perception of risk);
Acknowledge and provide support for positive steps already made;
Clarify critical rather than general misconceptions;
Negotiate a concrete, achievable behavior change step that will reduce HIV risk;
Seek flexibility in the prevention approach and counseling process;
Provide skill-building opportunities; and
Use explicit language when providing test results (p. 19-20).
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These components of client-centered prevention counseling have traditionally been delivered
in a two-session pre- and posttest counseling format. The delivery of HIV prevention
counseling in two sessions received strong empirical support from Project Respect a
national, multi-site clinical trial conducted from 1993 to 1996 and coordinated by the CDC.
The study examined the effects of different doses of counseling on behavior change among
heterosexual, HIV-negative, STD clinic populations. Findings from Project Respect
documented the efficacy of the two-session format focused on client-centered risk reduction.
Specifically, two sessions was found to be as efficacious as a more intensive, four-session
counseling intervention in terms of fostering positive behavior change that would reduce risk
for STDS at 3-, 6- and 12-month follow-up intervals. Importantly, both the brief, two-
session and enhanced, four-session intervention formats were found to be more efficacious
than the didactic presentation of information alone (Kamb et al., 1998).
During a key informant interview with a state health department official that took place in
Spring 2007, an important limitation in terms of the external validity (or generalizability) of
the Project Respect study was raised specifically, that the research protocol required strict
adherence to a counseling script. (Indeed, the journal article in which Project Respect results
were reported stated that quality control measures included periodic observations of
counseling sessions to ensure that scripts were being followed.) The state health official
emphasized that such strict adherence to a prescribed script was not reflective of what
normally occurs in the field, with counselors (even those working in the same counseling and
testing site) tending to use highly varied styles and approaches when counseling individual
patients/ clients. The following is an excerpt from the interview conducted to inform the
thesis research:
Interviewer: Isnt Project Respect our gold standard study? The most
rigorous study that we have ... ?
Respondent: It was done on people with STDs, to begin with. So, people
start to question already whether its applicable, or how applicable it is to
HIV. I think it was considered the gold standard study. I dont think it is
considered the gold standard study anymore. I think enough other studies
have been done, in real-life situations, that have challenged the results of
Project Respect... We do these studies under controlled conditions where
people basically read from a script, okay? ... It was daily reinforcement to
stick to the script. Do exactly the counseling session that was designed by
the researchers ... How often is that really the case in a real-life setting?
That people stick to anything close to a script? .... Ive observed a number of
sessions myself. The rigor thats applied to that kind of counseling is pretty
(hesitates) all over the board. Shall we just say that? ... So, thats probably
why this preponderance of other studies that have looked at different kinds of
counseling styles in real-life settings have shown no effect from the
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counseling [on seronegative clients who learn their results and receive post-
test counseling]. In a study where its a rigorously controlled, scripted,
intense counseling session, it does appear to give some results, even for the
negatives. [emphasis added]
Interviewer: Why, then, do we continue to emphasize tailoring,
personalizing the counseling?
Respondent: Well, whats interesting about the Project Respect script is that
it has a whole tailoring component to it. But, it also has a really rigorous
sexual history taking [component], I mean, the counselor gets totally
grounded in what the persons reality is. And then they do the risk reduction
plan, right? Well, what we find in practice is that people skirt questions.
They only half-ask certain questions. They just sort of wander around a bit.
And, then they do the risk reduction plan based on not a very rigorous
[assessment].
CDCs 2001 Revised Recommendations also document that, because client centered is
sometimes misinterpreted as meaning face-to-face, providers in many HIV test sites deliver
face-to-face informational messages in response to a generic checklist risk assessment
(2001b, p. 15). During the rapid HIV testing roll-out effort in Colorado, evaluators directly
observed counselors conducting risk assessments by asking close-ended questions specified
on paperwork required by the state health department at at least two STD clinics. CDC notes
that, This type of counseling provides advice rather than encourage[es] client participation
or discussion of personal risk; it seldom focuses on personal goal setting (ibid.).
Risk reduction planning may be compromised not only by a failure to conduct a thorough risk
assessment and to engage the client/ patient effectively in the risk reduction process, but also
by inconsistent regulatory requirements. A recent study conducted by the National Alliance
of State and Territorial AIDS Directors (NASTAD) examined efforts to implement HIV
screening in health care settings. The report noted that, among 49 states and the District of
Columbia, only 10 (20 percent) of respondents reported that their jurisdiction had a statutory
or regulatory requirement to conduct a risk assessment as part of pre-test counseling; only
nine (18 percent) reported having a statutory or regulatory requirement to conduct risk
reduction planning (2007b, p. 5).
CDC emphasized, first in 1994 and again in 2001, the importance of a thorough risk
assessment that helps ground the development of a concrete, specific, achievable risk
reduction plan in the individuals current life circumstances, risk context and level of self-
efficacy. A thorough risk assessment was what the script that was so rigorously reinforced
during the Project Respect study sought to achieve and, according to the state health
67


department official, why the study impacted HIV-negative patients/ clients to achieve and
sustain positive behavior changes up to a year following the intervention.
The preponderance of studies that have shown prevention counseling to have no effect on
seronegative patients/ clients, referred to above by the state health department official, was
actually a meta-analysis of research on the effects of prevention counseling based on a review
of studies published between 1985 and 1997. The article, by Weinhardt et al. (1999), is cited
as supporting evidence for the following statement appearing in the 2006 Recommendations,
which was used as part of the justification for relaxing counseling requirements for
seronegative patients/clients in health care settings:
The benefit of providing prevention counseling in conjunction with HIV
testing is less clear. HIV counseling with testing has been demonstrated to
be an effective intervention for HIV-infected participants, who increased
their safer behaviors and decreased their risk behaviors; HIV counseling and
testing as implemented in the studies [reviewed by Weinhardt et al.] had little
effect on HIV-negative participants (CDC 2006a:8).
Despite the emphasis placed on the analysis conducted by Weinhardt and his colleagues,
there are a number of important empirical limitations that should be noted with regard to the
meta-analysis. First, a relatively small number of studies were examined (N= 27) and only
two used biological markers as outcome variables; others relied on self-reported behavioral
data. Somewhat ironically, the CDC has criticized such information as being unreliable and,
consequently, in 2006, started recommending universal testing as opposed to targeted
screening based on self-reported risk because so many high-risk persons were being missed
with the targeted approach. Secondly, and as the authors noted, the studies generally
provided little or no detail about the counseling used ... (p. 1399)
Only 4 studies mentioned the length of counseling sessions, and 7 studies
provided no information at all. Although 5 studies supplemented counseling
with other components, including peer-group discussion, videotaped
presentations, and partner counseling, these reports did not include details of
the counseling procedures. Typically, studies did not indicate whether
procedures adhered to federal or other HIV-CT guidelines. Because of the
inconsistent amount of information reported, moderator analyses could not
be conducted (p. 1399).
Finally, the study period (1985 to 1997) occurred prior to the advent of second-generation
rapid HIV testing. Rapid HTV testing with same-day results has important implications for
the efficacy of prevention counseling with high-risk patients/ clients, a finding that surfaced
in both a national research study (Project RESPECT 2) and statewide evaluation of the roll-
out of rapid HIV testing in Colorado; the results of both studies were presented in Chapter 1.
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While the text of the 2006 guidance does acknowledge that randomized, controlled clinical
trials have demonstrated that the nature and duration of prevention counseling might
influence its effectiveness, CDC is clearly backing away from a strong endorsement of
prevention counseling. The 2006 Recommendations suggest that the previous pretest
counseling requirement created a barrier to routinizing HIV screening in health care settings.
The new guidance, therefore, makes it possible to omit the pretest counseling requirement in
order to enhance the feasibility of implementing universal, opt-out screening of patient
populations between 13 and 64 years of age. A CDC official interviewed for the thesis
research clarified that the current guidance continues to advocate the use of pre- and posttest
counseling for all patients/ clients in settings where prevention counseling has traditionally
been used and only makes an exception in settings where the counseling requirement has
been identified as a barrier to HIV antibody testing (health care settings, in particular).
He/she stated, This is not to say that counseling is not important. Its just that when it serves
as a barrier in a routine setting ... where you would not normally offer testing, 1 think its a
good thing to do, to not require it then.
In June 2007, NASTAD released a report examining health department efforts to implement
HIV screening in health care settings. The results suggest that the pretest counseling
requirement is a perceived rather than actual barrier to conducting HIV testing in these
settings. The report noted that:
The majority of jurisdictions reported that counseling, as defined by statute
or regulation, primarily refers to information about the test, such as the
benefits and drawbacks of testing and the meaning of test results [
information that is part of the process of obtaining authentic informed
consent]. This is consistent with the information that CDC recommends be
provided in conjunction with HIV testing performed on a screening basis in
health care facilities. This also suggests that more exploration is necessary to
determine if counseling is a perceived or actual barrier to implementing]
HIV [antibody] screening in health care settings (2007b, p. 22).
Key informant interviews with providers/ administrators in health care settings in the Denver
Metropolitan Area, which included representatives from two emergency departments,
supported the inference that the provision of pretest counseling is a perceived rather than
actual barrier. For example, an emergency department site that conducted risk-based
screening and one STD clinic that was conducting universal, opt-out testing had both been
able to establish feasible patient-flow models for incorporating pre-test counseling into the
testing process. (These and related findings will be presented and discussed in greater detail
in Chapter 6.)
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Prevention for Positives: What the Rhetoric Really Means for Individuals with HIV and
Those At Greatest Risk
Aspects of the 2001 and 2006 guidelines that underscore the importance of early knowledge
of HIV status and making HIV testing more accessible and available have served as the
basis for CDCs Serostatus Approach to Fighting the Epidemic (SAFE) and Advancing HIV
Prevention Initiative. Armed with data indicating a resurgence of HIV/AIDS among specific
demographic groups and a persistent trend of 40,000+ new HIV infections a year, CDC has
undertaken new approaches to preventing an epidemic that continues to mount. These newest
efforts, as the associated guidelines indicate, are focused on expanding access to voluntary
antibody testing, particularly among those at increased or heightened risk of HIV infection.
Second-generation rapid HIV testing with same-day results has been promoted as a key tool
to help the CDC achieve its goal of identifying more HIV-positive individuals of unknown
serostatus.
Representatives from the CDC provided a detailed outline of the agencys SAFE approach in
an article appearing in the American Journal of Public Health the same year the 2001
guidelines were released. An excerpt from the article abstract follows:
In the United States, HIV prevention programs have historically tailored
activities for specific groups primarily on the basis of behavioral risk factors
and demographic characteristics. Through the Serostatus Approach to
Fighting the Epidemic (SAFE), [CDC] is now expanding prevention
programs, especially for individuals with HIV, to reduce the risk of
transmission as a supplement to current programs that primarily focus on
reducing the risk of acquisition of the virus. For individuals with HIV, SAFE
comprises action steps that focus on diagnosing all HIV-infected persons,
linking them to appropriate high-quality care and prevention services,
helping them adhere to treatment regimens, and supporting them in adopting
and sustaining HIV risk reduction behavior. SAFE couples a traditional
infectious disease control focus on the infected person with behavioral
interventions that have been standard for HIV prevention programs
(Janssen35 et al., 2001; emphasis added).
As originally outlined in 2001, the objectives of SAFE were quite lofty. The approach sought
to strengthen the medical and behavioral services available to HIV-positive individuals in
order to support both adherence to drug therapies and positive behavior change, while
maintaining evidence-based prevention programs for those at greatest risk. This section
examines the evidence that CDC was, and continues to be, committed to achieving both aims.
35 Dr. Robert Janssen, the lead author of the piece, was the director of the CDCs Division of H1V-
AIDS Prevention at the time the article was published.
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This analytical endeavor was particularly important given the explicit emphasis placed on
prevention for positives as one of four strategies of CDCs newest initiative, Advancing HIV
Prevention: New Strategies for a Changing Epidemic. Advancing HIV Prevention was
unveiled in 2003 after it became clear that the CDC would not achieve the goal of SAFE,
which was to reduce by half the number of new HIV infections identified annually. This
second initiative focused specifically on the following strategies:
Routinizing HIV screening by establishing antibody testing as standard of care in
traditional medical settings;
Developing new models of HIV testing in non-medical settings (another strategy for
promoting expanded access);
Prevention for positives (i.e., reaching HIV-positive individuals of known serostatus
who are not in care, providing prevention case management and counseling,
bolstering partner notification and referral services); and,
Attempting to further reduce maternal-child HIV transmission.
The issue of how the CDC is currently defining linkage to care will be explored first,
followed by an examination of funding trends in order to investigate the authenticity of
CDCs claims that the federal agency would remain committed to prevention programs for
those at greatest risk, while zealously pursuing the identification of all HIV-positive
individuals of unknown serostatus and linking them to care.
Linkage to Care
In a Morbidity and Mortality Weekly Report published in 1999, the CDC reported that:
The benefits of early HIV CT are greater now than at any time during the
epidemic. For HIV-infected persons, highly active antiretroviral therapy
(HAART) has improved dramatically the quality and duration of life. For
public health, reduced HIV transmission may occur because many infected
persons probably will reduce sexual risk behavior after HIV-infection
diagnosis. In addition, HAART may reduce the risk for transmission by
[lowering viral loads] in [the] body fluids of HIV-infected persons. For these
reasons, public health programs should work to diagnose HIV infection in
each of the approximately 200,000 infected persons who do not know their
HIV status, link them to care and prevention services, and assist them in
adhering to treatment regimens and in sustaining risk-reduction behavior
(CDC, 1999, p. 2).
As the mechanism to help ensure that HIV-positive individuals receive both 1) the medical
support necessary to maintain the highest quality of life possible while minimizing
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infectivity, and 2) the counseling support necessary to make and maintain positive behavioral
changes, linkage to care was touted as a critical feature of the SAFE approach. More
recently, linkage to care was an implicit aspect of the prevention for positives strategy of the
Advancing HIV Prevention Initiative. It was not until a key informant interview with a
counselor at a local STD clinic in the summer of 2006, however, that the concept emerged as
a fruitful issue to explore through the policy analysis component of the dissertation. This
particular key informant was the professional on call when a preliminary-positive
individual was identified at the clinic. During the interview, the prevention case manager
explained that CDCs definition of linkage to care was more narrow than would be expected
based on the rhetoric of the SAFE initiative. The counselor stated:
In the CDCs definition, if [the patient is] given the CD4 viral results, then,
theyve been linked to care. We [at the local health department], I think
rightly, came to the conclusion that that is too weak of a definition of linkage
to care. There are a lot of folks who find it extremely difficult to deal with
the news in terms of, Whats going to happen now? Wheres my support?
How do I access care? Where am I going to access care? So [our office] is
there to provide that link to be with them, to accompany them, and help
direct them toward receiving care from the moment that theyve received
their diagnosis until they get linked up with care.
The interview with the CDC official, that occurred during the subsequent Winter, provided an
opportunity to seek further clarification, specifically in terms of what linkage to care
encompassed with respect to supporting maintenance of behavior change as well as
adherence to drug regimens. When asked how the CDC defined linkage to care, the
representative from CDC, in February 2007, responded:
Respondent: The issue that you asked is how does CDC define linkage to
care. And that is one that we are trying to, a concept that we are trying to
operationalize. In other words, what is the evidence that a linkage to care has
occurred? And I think we are leaning towards: have kept a first appointment
with a care provider, documentation that that appointment was kept. Thats
still a moving target. But I think thats the direction and thats certainly one
way to look at it documentation that an individual who has been referred to
care has kept that first appointment.
Interviewer: And referred to care so that would be the prevention case
manager.
Respondent: That would probably be a person thats going to meet that
individuals healthcare needs, rather than prevention needs ... Were also
looking at trying to define whether or not were going to require
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documentation of meeting with a prevention case manager or something like
that. But, right now, our real priority is ensuring a linkage to treatment and
care ... For example, if you have someone that has had the initial test and
then a confirmation of that test, they would be referred to a care provider
who could then talk to them about what they need to do. Whether they might
do CD4 testing at that point in time, and examine options for putting
someone on, whether or not they need to be placed on, antiretroviral therapy
at that time, or whether or not they need to come in periodically for
assessment. But its that first referral.
The CDC officials comments are noteworthy in several regards. First, it is interesting that
six years after unveiling the SAFE approach in 2001, which placed so much emphasis on the
importance of linkage to care for HIV-positive individuals, the federal agency did not have
indicators established that would permit any level of evaluation of 1) whether the
process/event of linking someone to care actually occurs, 2) the associated successes/
challenges, and 3) cost-effectiveness. In other words, it appeared that a framework for
accountability was absent. Secondly, despite the prevention for positives focus, it appeared
that the CDC was likely to limit the definition of linkage to care to newly-diagnosed
individuals attending their first appointment with a health care provider, at which time they
would be evaluated regarding the appropriateness of initiating antiretroviral therapy. Within
this definition, there was no directive to provide a newly-diagnosed person with assistance in
making and keeping the initial medical appointment, as is done locally at the STD clinic
referred to above. Moreover, there appeared to be no directive to address the 300,000 or
more individuals of known HIV-positive status who are not in treatment.
The CDC officials comments also suggest that linkage to care will be conceptualized as an
event (specifically, attendance at a single medical appointment for evaluation) rather than a
process of supporting an HIV-positive individuals needs over time. Consequently, HIV-
positive individuals would not receive the behavioral support necessary to maintain (for the
remainder of their lives) either challenging treatment regimens or positive behavior changes.
This is a particularly salient concern given the difficult life circumstances that persons most
likely to be infected, or who are most at risk of becoming infected in the future, already face.
Over time, these individuals, because of lack of ongoing support and structural barriers such
as lack of reliable, safe transportation, may very well swell the numbers of HIV-positive
individuals not in treatment. Relapse of such individuals has dire public health consequences
given that they are already infected and may even acquire drug-resistant strains of the virus as
a result of inconsistent adherence.
Furthermore, although CDCs emphasis on early diagnosis is likely to facilitate earlier
engagement in effective treatment for some HIV-positive individuals, the long-term toxicity
of combination antiretroviral therapy is a concern. Such concerns have led to a shift from the
previous dogma of treat early and treat hard to acceptance of the approach that therapy
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not be initiated until CD4 counts have fallen to about 350 x 106 cells/1 (Crowe & Asjo, 2004,
p. 2197). In addition, there is increasing recognition that the pharmacological management of
HIV does not provide the magic bullet so often sought after by biomedical research.
According to Catania et al. (2001), ... Treatments that have brought about declining
mortality rates among MSM are harsh and difficult to adhere to and may contribute to [the]
development of new variants of the disease (p. 913). Wolitski et al. (2001) make a similar
point. The authors state, Although HAART has extended the lives of many, treatment is
costly, lifelong, and difficult to maintain. It has multiple side effects, and it can lead to drug-
resistant strains of HIV, [which] can be transmitted to others (p. 883).
There is also the question of access. Despite the apparent emphasis on the pharmacological
management of HIV, the AIDS Drug Assistance Program (ADAP) the final safety net
prescription drug program for persons who either do not qualify for Medicaid or who are
enrolled but lack adequate prescription drug coverage is already lacking the capacity to
meet demand. In an obvious disconnect between public and fiscal policy, state ADAPs have
been in financial crisis for years, resulting in long waiting lists. According to the Associated
Press, National data and published reports studied by the CDC showed that 480,000 HIV-
infected people ages 15 to 49 should have been getting antiretroviral drugs in 2003, yet only
268,000, or 56%, were given such medication (Donn, Rocky Mountain News, February 26,
2005). In February 2006, a total of 791 individuals were on ADAP waiting lists in nine
states. More recently, the Kaiser Family Foundation reported that, as of May 16, 2007, four
states/ US territories had a total of 529 people on waiting lists. In written testimony for
submission to a US Senate subcommittee, the Director of the HIV/AIDS Program for the
Louisiana Office of Public Health and former chair of the Executive Committee of NASTAD
noted, It is extremely challenging to engage in efforts to increase the number of people who
are aware of their HIV status if the only thing you have to offer is a waiting list (Scalco,
April 26, 2006, p. 8. Retrieved August 17, 2007, from
http://hsgac.senate.gov/ files/042606Scalco.pdf).
But waiting lists are not the only indicator of the degree to which HIV-positive individuals
may have limited access to the medications they so desperately need. As state ADAPs
struggle to achieve fiscal solvency, they have instituted a growing number of cost-
containment measures that mask the need for waiting lists at any given time. Such measures
include, but are not limited to, further restricting eligibility on the basis, for example, of
annual income; limited drug formularies; medication-specific waiting lists; annual or monthly
expenditure caps; and, cost-sharing in the form of co-pays (NASTAD fact sheet: President
Bushs $20 Million ADAP Initiative, Retrieved October 9, 2007, from
http://www.kff.org/hivaids/upload/President-Bush-s-20M-ADAP-Initiative.pdf).
And, yet, the demand for ADAP assistance will only continue to intensify as individuals
receiving such assistance live longer, more of the 200,000 HIV-positive individuals of
unknown serostatus are identified through expanded access to rapid HIV testing, and some
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portion of the 300,000 individuals of known HIV-positive status who are not in treatment are
referred into care. According to Scalcos testimony:
ADAPs across the country continue to encounter significant challenges in
maintaining fiscal stability while adequately serving the growing number of
uninsured and underinsured individuals living with HIV ... For the past five
years, ADAP expenditures have grown by $100 million each year ... For
FY2007, state AIDS directors seek an increase of $197 million for ADAPs to
maintain those currently enrolled, to meet the growing demand to enroll new
clients, and to strengthen ADAPs to provide [Public Health Service]
recommended drugs (p. 9).
The inability of social programs funded by federal, state and local governments to
accommodate the treatment of indigent persons living with HIV/AIDS will undermine two
major tenets of the SAFE approach and prevention-for-positives strategy: 1) initiating
treatment at an earlier stage will lead to better medical outcomes; and, 2) initiating treatment
and maintaining treatment adherence will bring down viral loads, thus making such carriers
less infectious to others.
Neither of these objectives can be achieved if HIV-positive individuals do not have access to
the care they need. The application of the infectious disease paradigm to HIV a paradigm
shift made explicit by the SAFE approach fails to consider the social and moral imperative
of ensuring access to care even as it places individuals at great social risk, due to the
prevailing stigma associated with HIV and affiliation with at-risk groups. The CDC has
postulated that making HIV antibody screening part of the standard of care in health care
settings will reduce the stigma associated with HIV testing and, perhaps by extension, HIV
infection. Changing the social norms surrounding HIV, however, will take considerable time,
as is evidenced by how little prevailing social attitudes regarding HIV-positive individuals,
those at risk and associated risk behaviors have changed in the nearly 30-year history of the
US epidemic. Succinctly stated, expanded testing in the absence of access to life-extending
medications may expose a large proportion of individuals of unknown serostatus to
considerable social risk while offering no medical benefit (Fee and Krieger, 1993, p. 1479) -
a situation that persists from the early years of the epidemic when there were no protease
inhibitors. Today, medical advances are available to manage HIV as a chronic infectious
disease. Yet, the political will necessary to ensure access to such therapies for an increasing
number of disenfranchised persons found to be positive is lacking. Lack of political will to
ensure access, itself, serves as evidence of the structural violence surrounding HIV, which
continues to be a disease of minorities, the poor, and other socially-vulnerable groups,
including women, children, and men who have sex with men.
Ironically, while CDC is pushing expanded access to HIV testing, a cost-effectiveness
analysis of HIV counseling, testing and referral, conducted by researchers associated with the
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Harvard Medical School and Harvard School of Public Health, indicated that limited
screening resources are best targeted toward returning for results and linkage [to care] among
those already identified with [HIV/AIDS] rather than offering testing to additional people
(Walensky et al., 2005, p. 321). And, while rapid HIV testing has helped ensure that more of
those tested receive their results (thus eliminating the need to return for results), the authors
cite statistics from a national probability sample of HIV-infected individuals, which estimated
that between 36% and 63% of infected persons do not actively receive longitudinal care for
their disease (p. 327). Sound public health policy should ensure that those who are tested
under the current guidelines and learn of their HIV infection do indeed receive quality and
timely medical treatment and psychosocial support on an ongoing basis.
Other cost-benefit analyses have revealed additional shortfalls in CDCs recent prevention
initiatives. Specifically, an analysis conducted by the RAND Corporation highlighted the
importance of investing in a broad range of prevention strategies, including those that reach
large segments of the population in which HIV prevalence is low, as well as more costly and
intensive interventions that, when effectively targeted toward those at greatest risk, also retain
an acceptable cost benefit. Examples of the former included interventions that are extremely
inexpensive per person reached, such as mass media campaigns and educational videos in
STD clinics. Examples of the latter included needle exchange programs among IDUs with a
high-to-medium seroprevalence and community outreach to men who have sex with men. In
fact, the authors of the study reported that community outreach to MSM using the
Mpowerment model was the single most effective intervention, potentially preventing nearly
9,000 infections per year (please see Table 11, below; RAND Health Fact Sheet). The
cumulative number of annual infections prevented across the 10 most cost-effective
interventions was 20,761. In contrast, When we limited the choice of interventions to the
four [that are] consistent with the new CDC HIV prevention initiative [Advancing HIV
Prevention], only 7,315 infections were potentially prevented (2005, p. 921). Importantly,
preventing new HIV infections through antiretroviral treatment of HIV-positive individuals
was not included as an intervention examined because it exceeded the $200,000-cost-per-
infection-prevented threshold used in the mathematical model. The study authors, Cohen,
Wu and Farley, estimated that antiretroviral treatment of HIV-infected persons costs
$350,000 to avert a single HIV infection through secondary prevention (ibid). Finally, the
authors noted:
The new CDC strategy calls for increasing the percentage of people who
know they are infected from 75 percent to 95 percent. Achieving this goal
would require that an additional 160,000 HIV-positive people learn their
status. If the prevalence in the tested population were 1-3 percent, then 5.3-
16 million people would need to be screened more than could be screened
by shifting the entire CDC HIV prevention budget to the four new prevention
strategies (p. 924).
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In an ironic twist, in 1998, after results of Project Respect were published, representatives of
the CDC submitted an abstract to the 12th International AIDS Conference touting the cost
effectiveness of prevention counseling. The authors stated, Brief counseling [defined as two
sessions with a counselor] could prevent 20% of new STDs at $304 per case prevented and
(we estimate) 20% of new HIV infections at $12,098 per case prevented. Compared to direct
medical costs of STD and HIV, this is a small investment (abstract no. 33263;
www.aegis.com/conferences/iac/1998/33263.html accessed 4/28/06. emphasis added).
The cost-benefit analysis conducted by the RAND Corporation, and featured in the
July/August 2005 issue of Health Affairs in an article titled Cost-Effective Allocation of
Government Funds to Prevent HIV Infection, is consistent with data collected for the thesis
research (and presented in Chapters 6 and 7). Thesis findings suggest that making rapid HIV
testing available in a targeted fashion through, for example, community outreach to MSM,
may reach individuals earlier (i.e., before a sentinel health event brings disenfranchised
individuals into an emergency department the health care setting most likely to be visited
by the growing number of disinfranchised persons who are HIV-positive). Such targeted
testing should be coupled with an in-depth risk assessment that will guide a highly-tailored
approach to counseling, as was the case with the Project Respect study highlighted earlier in
this chapter. Targeted testing, coupled with rigorous client-centered prevention counseling
that is sufficiently grounded in high-risk individuals risk context, must also be coupled with
linkage to care efforts that ensure that both HIV-positive and negative individuals receive
longitudinal support for their medical and/or behavioral needs. Such programs should
supplement, not replace, more upstream, evidence-based prevention programs and
interventions for those at greatest risk. The next section examines what has become of such
programs within the prevention-for-positives policy context.
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Table 11: Cost-Effective Interventions to Prevent HIV Infections
Cost Per
People Annual Cost of Infections Infection
Intervention Reached Intervention Prevented Prevented
Educational videos in STD clinics
Notifying sexual partners
Community outreach (Mpowerment model^
STD screening at HIV clinics
Implementing needle exchange in high-prevalence
areas
Mass media campaigns
Opinion leaders programs
Implementing needle exchange in medium-
prevalence areas
Increasing condom availability/accessibility
HIV counseling and testing (one-on-one)
Total
a This model allows gay people in each community to tailor and
i http://www.mpowerment.pro/.
2,000,000 $2,700,000 580 $4,700
54,000 $13,500,000 2,230 $6,100
600,000 $109,096,000 8,921 $12,000
467,000 $18,680,000 1,606 $12,000
1,000,000 $30,380,000 2,291 $13,000
70,000,000 19,999,000 1,131 $18,000
600,000 $22,851,000 994 $23,000
600,000 $18,228,000 388 $47,000
24,905,725 $90,566,000 1,920 $47,000
1,000,000 $74,000,000 700 $110,000
$400,000,000 20,761
the intervention, For more nformation, go to
RAND Health Fact Sheet accessed October 20, 2007 at
http://www.rand.org/pubs/research briefs/RB9132/index 1 .html
Prevention for Positives: Redirecting Policy Focus and Public Money
Information regarding funding trends provides a window through which to examine the
degree to which programs focusing on HIV-positive individuals have supplemented or,
perhaps, replaced programs that primarily focus on reducing the risk of acquiring HIV among
those at greatest risk. In fact, numerous newspaper stories and briefings, at both the state and
federal level, begin to tell the story of how funding shifts have forced HIV prevention
organizations and their staff to choose between providing services to those at highest risk for
HIV infection and identifying HIV-positive individuals.
A Los Angeles Times piece, published on April 18, 2003, featured the headline, Federal
Spending on HIV Prevention to Shift Course. The accompanying caption read, The new
focus will be on people already infected with the virus, not those who are at risk. AIDS
groups criticize change. At stake is $90 million (Omstein). CDC Director Julie L.
Gerberding reportedly told the Los Angeles Times that efforts aimed at high-risk uninfected
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people appear to be stalled, with the number of new HIV infections hovering at about 40,000
per year for the last decade (ibid). The article also highlighted the comments of Terje
Anderson, executive director of the National Association of People with AIDS, who
expressed the opinion that CDC may be using the guise of expanded testing as a way to
dodge the criticism it has received from conservative politicians about safe-sex programs ...
Anderson said, Its just a backdoor way of defunding some of these interventions that have
been so controversial. The Los Angeles Times reported in a separate article that, the year
before, Californias Office of AIDS redirected as much as 25% of the states annual
prevention budget toward campaigns aimed at prevention for positives programs (Costello,
September 29, 2003).
Funding reallocations may be reflective of a paradigm shift in HIV prevention, from a
community-based approach to a biomedical model. Others (community activists and
researchers alike) have suggested that recent changes are more reflective of the politicization
of science, generally, and HIV/AIDS, more specifically. Take, for example, the recent
investigations of the STOP AIDS Project in San Francisco a major US city that continues to
serve as an epicenter of the US epidemic. In 2001, Representative Mark E. Souder (R-1N)
accused the organization of misusing government funds by promoting sex and violating
federal obscenity standards. While an initial investigation, led by the Health and Human
Services (HHS) inspector general Janet Rehnquist (daughter of the late, conservative US
Supreme Court Chief Justice William Rehnquist), found that workshops appeared to directly
promote sexual activity, ultimately the investigation concluded that the projects federal
funding could not be revoked because it did not violate the local obscenity standards of the
community the project was trying to reach with prevention messages.36 In 2002, CDC
Director Dr. Julie Gerberding initiated a separate investigation, which came to similar
conclusions. What is perhaps most ironic is that STOP AIDS programs are built upon the
evidence-based approaches of the Mpowerment model a program promoted by the CDC.
Workshops are designed by young gay men for young men who have sex with men and use
language and messages designed to be meaningful to the community. Workshops are also
designed to create safe social spaces for MSM to come with issues for discussion, problem
solving and role playing for risk reduction.
Reflecting what was occurring on the West Coast, in Washington, D.C., the districts
HIV/AIDS Administration (HAA) cut by 55% funding for an HIV prevention program
targeting MSM that was being provided by the long-standing and highly respected Whitman-
Walker Clinic. According to the Kaiser Daily HIV/AIDS Report, which picked up the story
in December 2003 from the Washington Blade, the cut reduced the funding available for the
36 Representative Souders claims, and the resulting investigation, led to Congress adding a provision
to the FY2002 appropriations bill for HHS allowing the agencys inspector general to conduct an
audit of any federally-funded HIV/AIDS prevention program (amfAR AIDS Research, Retrieved
October 21, 2007, from httr>://www.amfar.org/cgi-bin/iowa/news/record.html?record= 1221.
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program from $440,000 in 2003 to $200,000 in 2004. The program in question, called G-
NET, distributes condoms and safe sex literature at bars and nightclubs, conducts workshops
discouraging multiple sex partners, and provides individual counseling and skills-building
groups for MSM in the District. The Kaiser Daily HIV/AIDS Report stated:
Ivan Torres, interim administrator of HHA, said that the cut was solely based
on a decrease in federal funding and was not linked to the programs
performance. Torres also said that HAA has not received complaints about
G-NET, although Congress and other groups have criticized similar
programs in other cities ... (December 16, 2003).
The Kaiser Report also explicitly stated that the reduction in funding provided for the
program was needed to comply with new CDC guidelines that call for a shift in prevention
funds to target people who are already HIV positive.
According to the strategy, the government will invest most heavily in initiatives that focus on
identifying HIV-positive people who are unaware of their status, which could jeopardize
approximately $90 million in annual federal funding for community groups. The CDC has
said that the current emphasis on community outreach prevention programs has proven
ineffective, citing annual increases in the number of new HIV cases nationwide (Kaiser Daily
HIV/AIDS Report, September 29, 2003).
Such statements, made by federal authorities, question the efficacy of community outreach
and other programs focused on high-risk negatives, despite the evidence available that
validates the important public health contributions that such approaches can make when
effectively targeted. A Public Health Monitoring Report of the Open Society Institute
underscores the efficacy of prevention programs:
Today, the transmission rate is between 4 percent and 4.34 percent, meaning
that approximately 96 people living with HIV/AIDS do not transmit the virus
to others in a given year. As David Holtgrave of Johns Hopkins University
has pointed out, this means that the overall U.S. HIV transmission rate has
reached approximately the same level as the perinatal HIV transmission rate.
This is particularly impressive, since programs to prevent perinatal infection
have the advantage of a biomedical intervention (i.e., ARVs) and regular
interactions between pregnant women and health providers (Retrieved
October 27, 2006, from
http://www.soros.org/initiatives/health/focus/phw/articles publications/publi
cations/hivaids 20060523/ushivaids.pdf. page 47).
Ironically, Thomas Coates, a national expert on HIV prevention, has cautioned that there is
little evidence currently available to support the prevention-for-positives approach that these
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same federal authorities are now endorsing. Lamenting the paucity of empirical support and
the lack of funding available to treat those diagnosed with HIV, Coates, who is a professor of
infectious disease at the UCLA Medical School, was quoted in the Los Angeles Times as
saying, These policies are being promulgated at a bad time (Costello, September 29, 2003).
In the Denver area, providers described the difficult choices they have had to make when
confronted with the needs of high-risk, negative patients/ clients. One provider affiliated with
an STD clinic anguished over the lost opportunities to intervene earlier before individuals
were diagnosed as HIV positive. He/she stated:
I think [that] when we go spending all of this money on prevention [for]
positives, we are way late. Its good I mean, I completely understand the
rationale, but what didnt we do with these people way back when we could
have? A lot of the people who are testing positive are, like, teenagers and
early twenty-year-olds. Why? What information did they not get? Could
we have intervened?
Approaches, such as those emphasized with the Advancing HIV Prevention Initiative, that
have such a limited focus on newly diagnosing individuals are short-sighted as prevention
policies designed to stem the epidemic. The Serostatus Approach to Fighting the Epidemic,
when unveiled in 2001, was touted as an expansion of prevention intervention efforts focused
on preventing the acquisition of the virus. However, data from policy documents and the
investigators research suggest that diagnosis and treatment (the biomedical model that
focuses on persons who are already positive) has supplanted the prevention paradigm that
guided public policy in the past.
Conclusion: End of HIV Exceptionalism
When viewed in an historical context, the significance of the 2001 and 2006 Revised
Recommendations, and the policy initiatives that underlie them, extends beyond the policy
shifts outlined. More globally, the current guidelines represent a trend that has been
unfolding for many years specifically, a trend toward the end of HIV exceptionalism. First
coined by Bayer (1991), the term refers to the public health exceptions made in response to
the deadly communicable disease in the face of social and political pressure from highly
organized and influential community groups and advocates who sought to protect the
individual rights of those whose vulnerability to HIV was inextricably linked to their social
vulnerability. Traditional interventions designed to protect the public from sexually
transmitted and other communicable diseases included mandatory compulsory examination
and screening, breaching the confidentiality of the clinical relationship by reporting to public
health registries the names of those [diagnosed] with dangerous diseases, ... and, in the
most extreme cases, confining persons through the power of quarantine (p. 1500). While
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statutory precedents had been established in the early 1900s for the use of these coercive
measures, their application to HIV and those infected or at high risk were deemed, except in
the most extreme cases, unacceptable and inappropriate. Consequently, exceptional status
was given to HIV/AIDS and exceptional measures were taken to help protect the
confidentiality of individuals who accepted HIV antibody testing. In addition, informed
consent requirements associated with voluntary testing were strengthened to ensure that
individuals understood what was being tested, the meaning of test results and what would be
done with the information.
Central to the exceptional ism that characterized the public health response to HIV/AIDS in
the early 1980s was the dilemma of protecting the rights of individuals versus the need to
protect the publics health. While protecting the rights of individuals associated with
socially-vulnerable groups served as the stronger force shaping policies related to antibody
testing in the early years of the epidemic, recent policy shifts undoubtedly reflect changing
social sensibilities, as well as opportunities to successfully manage the course of the disease
and, in so doing, the infectivity of HIV-positive individuals through viral load suppression.
While the former (enhanced medical management) could be framed in terms of an issue of
individual rights (through, for example, initiatives promoting access to drug treatments), the
CDC has been slow to work with the insurance industry to ensure that HIV testing is a
covered benefit and to guarantee that the increasing number of individuals who learn they are
HIV positive and live longer lives with the disease will have adequate access to medical care,
including the most efficacious drug therapies, in the future. The latter issue (of reducing the
infectivity of HIV-positive individuals who, it is implied, are a public health threat) has
received much greater attention in policy documents and is one of the major rationale given
for recommending large-scale screening of the public.
Policymakers have also justified new policy initiatives that seek to routinize HIV testing in
health care settings by arguing that treating HIV testing no differently than other medical
diagnostic procedures will reduce the stigma associated with seeking testing, particularly
among populations at greatest risk. While routinizing HIV testing through opt-out universal
screening of some patient populations may help ensure that more people are tested and, in the
era of second generation rapid HIV testing, learn their status, such policies may actually do
very little to destigmatize HIV infection, particularly when patients seeking care in traditional
medical settings are likely to receive explicit, verbal information about HIV from a health
care provider only if they have a preliminary positive test result. Such a scenario may
actually serve to exacerbate both fear around HIV and distrust of medical institutions among
populations at greatest risk an issue that underscores the structural violence surrounding
HIV and the ways in which misguided federal policy can perpetuate such violence among
socially-vulnerable groups.
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