Treating AIDS

Thurka Sangaramoorthy

• Publisher: Rutgers University Press
• Year: 2014
• Print ISBN: 9780813563732
• eBook ISBN: 9780813571874
• Topic: Social Sciences
• Subtopic: Public Health, Administration & Care
• Index: Social Sciences

 There is an inherently powerful and complex paradox underlying HIV/AIDS prevention—between the focus on collective advocacy mobilized to combat global HIV/AIDS and the staggeringly disproportionate rates of HIV/AIDS in many places. In  Treating AIDS, Thurka Sangaramoorthy examines the everyday practices of HIV/AIDS prevention in the United States from the perspective of AIDS experts and Haitian immigrants in South Florida. Although there is worldwide emphasis on the universality of HIV/AIDS as a social, political, economic, and biomedical problem, developments in HIV/AIDS prevention are rooted in and focused exclusively on disparities in HIV/AIDS morbidity and mortality framed through the rubric of race, ethnicity, and nationality. Everyone is at equal risk for contracting HIV/AIDS, Sangaramoorthy notes, but the ways in which people experience and manage that risk—and the disease itself—is highly dependent on race, ethnic identity, sexuality, gender, immigration status, and other notions of “difference.”Sangaramoorthy documents in detail the work of AIDS prevention programs and their effect on the health and well-being of Haitians, a transnational community long plagued by the stigma of being stereotyped in public discourse as disease carriers. By tracing the ways in which public knowledge of AIDS prevention science circulates from sites of surveillance and regulation, to various clinics and hospitals, to the social worlds embraced by this immigrant community, she ultimately demonstrates the ways in which AIDS prevention programs help to reinforce categories of individual and collective difference, and how they continue to sustain the persistent and pernicious idea of race and ethnicity as risk factors for the disease.

1

Treating Us, Treating Them

Standing on the outdoor platform of the Metrorail stop at the University of Miami on a blisteringly hot day, I was struck by a large black, white, and red poster (see figure 1.1). The poster depicted numerous celebrities, scientists, political leaders, and social activists standing and walking barefoot in graduated rows of concrete blocks. Nelson Mandela, Archbishop Desmond Tutu, Alicia Keys, Elton John, Will Smith, Zackie Achmat, and Elizabeth Taylor, among others, were shown stepping into cement and leaving a footprint—a metaphor for their commitment to the global fight against HIV/AIDS.1 But the familiar faces were not what drew me to the poster. I was captivated by the message “we all have AIDS,” which was written in large white and red capital letters across the bodies of those pictured. A much smaller phrase in the lower left corner completed the message: “if one of us does.” “We all have AIDS” dwarfed both the final phrase and the human images.

I saw this sign repeatedly for several months in early 2006 in Miami’s Metrorail system. The poster, it turned out, was part of what was reportedly the largest public service multimedia campaign about HIV/AIDS ever launched in the United States. The initiative was a collaborative effort between the fashion designer Kenneth Cole, chairman of the American Foundation for AIDS Research (amfAR), and KnowAIDS, a multimedia campaign funded by the Henry J. Kaiser Family Foundation, Viacom, and the CBS Corporation. The KnowAIDS campaign was a multiyear public service messaging initiative started in 2003 to “educate the general population about the impact of AIDS globally, and to promote prevention and testing among higher-risk populations, including young people, African Americans, Latinos, women, and men who have sex with men” (PRNewswire 2003).

Figure 1.1 “We All Have AIDS” public service announcement print and outdoor advertisement commemorating World AIDS Day 2005. Kenneth Cole Productions, Inc. Used with kind permission.

The “We All Have AIDS” campaign, as it is called, built on the momentum of KnowAIDS. To raise awareness of the damaging effects of stigma in the prevention and eradication of HIV/AIDS, the campaign used print, outdoor, radio, and online advertising depicting leaders in entertainment, politics, and science standing in solidarity with those affected by HIV/AIDS. AmfAR describes the campaign as “a powerful display of the unity and solidarity we all share with the 40 million men, women, and children living with HIV/AIDS around the world” (American Foundation for AIDS Research 2006, 1). In speaking specifically about the people depicted in the ads, Kenneth Cole states: “With help from these extraordinary role models we hope to foster solidarity so that the world can focus on improving HIV prevention and treatment programs, and support necessary AIDS research” (American Foundation for AIDS Research 2006, 9). In addition to the public service announcements and media outreach, the campaign ran print advertisements in magazines such as Vogue and Rolling Stone and sold $35 limited-edition “We all have AIDS” T-shirts—products well out of reach of millions of people living with HIV/AIDS—in upscale stores such as Barneys New York and Selfridges, in London.

By calling attention to unified responsibility and the global response to HIV/AIDS, the campaign and its messages and sponsors serve as powerful tropes for recent transformations in global politics, economic consumerism, and biomedical and technological advances. The campaign marks the remarkable coming together of diverse individuals, institutions, and interests. Industry leaders in biotechnology, science, entertainment, and politics along with the fashion industry, international nonprofits, private foundations, and multibillion-dollar corporations collaborate to portray a unified front in fighting HIV/AIDS around the world. The multimedia campaign focuses on leaders and experts, referred to as “extraordinary role models,” and their “unity and solidarity” with those who are living with HIV/AIDS. Those who are depicted as “higher-risk populations” or the “40 million men, women, and children living with HIV/AIDS around the world” are not the targets of the campaign. It is aimed at us, the “general population.” We become the visual and material consumers of this campaign, aligning ourselves with these leaders and activists, sympathizing with those afflicted with HIV/AIDS, and buying $35 T-shirts at high-end retailers. The campaign calls on us to “have” HIV/AIDS even though we do not directly experience the debilitating physical, emotional, economic, and social consequences of HIV/AIDS.

People, Pathology, and Place

Who are the “40 million men, women, and children living with HIV/AIDS around the world”? Current HIV/AIDS research in the United States indicates that both new AIDS cases and HIV infections continue to rise exponentially among racial and ethnic minority populations (Black AIDS Institute 2011; Cargill and Stone 2005; Centers for Disease Control and Prevention 2007b, 2013a; Kaiser Family Foundation 2013; Prejean et al. 2011). These disproportionately high rates are especially pronounced in Florida, and HIV/AIDS has had a profound impact on both the state as a whole and on Miami. Florida has the third highest number of cumulative AIDS cases and the second highest number of new HIV infections in the nation, while Miami ranks third among metropolitan areas reporting cumulative AIDS cases and new HIV diagnoses (Centers for Disease Control and Prevention 2013a). In 2011, blacks2 made up 15 percent of the adult population of Florida but accounted for 55 percent of adult AIDS cases and 48 percent of adult HIV infections reported in the state (Florida Department of Health 2011a). The annual case rate of AIDS diagnoses for blacks in Florida in 2010 was 88.5 per 100,000 people, which is much higher than the comparable figure for blacks in the United States as a whole (53.4 per 100,000) (Kaiser Family Foundation 2011). In 2010 HIV/AIDS was the fourth leading cause of death for black adults living in Florida; it had been the leading cause of death from 1988 until 2010 (Florida Department of Health 2010).

Miami plays a key role in the national debates about HIV/AIDS prevention and intervention because it is a place where relations between race, ethnicity, risk, and HIV/AIDS are continually evolving. Growing concerns about disparities in HIV/AIDS rates among blacks and Hispanics have brought discourses of race and ethnicity to the fore.3 Many scholars and public health experts argue that existing HIV/AIDS prevention strategies, which are focused on testing, treatment, education initiatives, and interventions designed to change people’s behavior, fail to work in communities of color because they are not culturally appropriate (Marcelin and Marcelin 2001; Marcelin et al. 2006; Martin et al. 1995; Needle et al. 2003; D. Williams and Jackson 2000). They also claim that grouping together Miami’s numerous different ethnic groups into a few labels such as “black” or “Hispanic” obscures specific risks that prevent the successful formulation of research and community-based preventive intervention strategies (Marcelin et al. 2006; Norris and DeMarco 2004). They advocate for the standard use of more-nuanced racial and ethnic categories such as “Haitian,” even though significant demographic changes, public debates and movements, and recent advances in genetic research have increasingly called into question biological distinctions between races.

The category of “Haitian” and its link to pathology and HIV/AIDS are particularly salient for Haitians in Miami and for health and social service providers and advocates who work with Haitians. In the early 1980s, at the beginning of the HIV/AIDS epidemic, the Centers for Disease Control and Prevention and many public health officials in other US agencies identified Haitians as one of the four high-risk groups—infamously dubbed the “4-H club” because of its inclusion of homosexuals, hemophiliacs, heroin users, and Haitians—and in 1990 the Food and Drug Administration prohibited anyone of Haitian descent from donating blood in the United States. These actions of classifying and labeling an entire national group as high risk and placing all of its members among those whose so-called immoral behaviors placed them at risk for acquiring HIV/AIDS fueled preexisting racial tensions and led to various acts of violence and large-scale discrimination against Haitian emigrants (Fairchild and Tynan 1994; Farmer 1992; Nachman 1993). The direct official association of Haitians with HIV/AIDS, although later repealed, caused and still causes severe consequences for Haitians around the world. The collection of Haitian-specific HIV/AIDS data also continues to be a highly debated issue in places like Miami because of this legacy.

Data about HIV/AIDS rates for Haitians at the local, state, and national levels are very scarce. The Florida Department of Health (2011b) does collect statistics on Haitians, and 2011 estimates—the most recent available—are that the Haitian-born population comprised 2 percent of the population but 7 percent of the HIV/AIDS population and 16 percent of the black HIV/AIDS population in the state.4 Experts stress that these estimates are gross undercounts due to Haitians’ unstable patterns of housing, high mobility, distrust of government in general and health officials in particular, immigration status, and other factors (Marcelin and Marcelin 2001; Stepick and Stepick 1990). In addition, the anthropologists Louis Marcelin and Louise Marcelin (2001) claim that county health officials began to estimate new HIV/AIDS cases only in 1999, and annual reports since then reveal that Haitians account for 11–12 percent of all new cases of HIV/AIDS, the highest of the groups in the “black/African-American” category. A majority of these cases (80 percent) were found during mandatory blood tests for adjustment of immigration status, and not as a result of effective surveillance or voluntary testing (Marcelin and Marcelin 2001).

Why Don’t We All Have HIV/AIDS?

There is an inherently powerful and complex paradox underlying the science and practice of HIV/AIDS prevention, which is embodied both by the “We All Have AIDS” campaign’s focus on collective advocacy mobilized to combat HIV/AIDS around the globe and by the staggeringly disproportionate rates of HIV/AIDS in many places, like Miami. HIV/AIDS prevention makes claims about the universal impact of HIV/AIDS and the ensuing social responsibility that we all have through national multimedia campaigns like “We All Have AIDS.” At the same time, HIV/AIDS prevention efforts focus on “higher-risk populations” and divide groups of people through the use of categories of social difference—that is, race, ethnicity, sexual orientation, and national origin. Although many diverse groups and interests come together in global HIV/AIDS prevention to promote the universality of HIV/AIDS as a social, political, economic, and biomedical problem, in places like Miami, developments in HIV/AIDS prevention are rooted in and focused exclusively on disparities in HIV/AIDS morbidity and mortality framed by the rubrics of race, ethnicity, and nationality.

In this book, I am concerned with how a unified responsibility to global HIV/AIDS exists alongside the uncontested presence of severe disparities in HIV/AIDS rates, treatment, and stigma. I am interested not only in how we all have HIV/AIDS, but also in how we come to have HIV/AIDS and the ways in which social difference firmly structures our experiences and management of HIV/AIDS. I examine this paradox by documenting an on-the-ground view of HIV/AIDS prevention programs in Miami and their effect on the health and well-being of Haitians, a transnational community long plagued by the stigma of being HIV/AIDS carriers.

This book addresses three central questions. First, how does a universal responsibility for HIV/AIDS around the globe operate in conjunction with the indisputable existence of disparities in HIV/AIDS rates? Second, how are categories of social difference—particularly race and ethnicity—produced, sustained, and transformed by HIV/AIDS prevention science and practice? Finally, how does HIV/AIDS prevention work in the Haitian community, given its long history of discrimination and its distrust of public health and social institutions?

These questions are best answered using highly interdisciplinary theoretical and methodological frameworks. By focusing on cultural interpretations of marginalized populations or the political economy of HIV/AIDS in Miami, I might come to understand how social vulnerability is experienced and enacted in Miami or how larger geopolitical forces affect individual suffering. But by critically engaging with and integrating theoretical and methodological approaches from medical anthropology, epidemiology, science and technology studies, critical race theory, and citizenship, I am able to examine thoroughly how the health and well-being of individuals and groups are affected by larger social formations, cultural norms, and local and global politics. By working in key sites of HIV/AIDS scientific and policy governance, prevention programs, and the social worlds of Haitians living in Miami, I can interpret more broadly the ways in which HIV/AIDS prevention reproduces and naturalizes categories of social difference and fails to capture the reality of the daily lives of the people it tries to know and act on.

Universality and Fragmentation

Based on long-term ethnographic fieldwork, I chronicle how HIV/AIDS prevention is a critical framework through which we can observe the paradox of postmodernity (Harvey 1989), in which there is both a celebration of fragmentation as well as an embrace of unification (or globalization) in an increasingly transnational and commodity-driven world. Recent innovations in science and technology, such as molecular genetics and evidence-based medicine, have transformed the ways in which we come to see and understand the conceptualization of life itself, from our universal human identity to the vast disparities and inequities that infiltrate all aspects of our society (Clarke et al. 2003; Dumit 2003; Franklin and Lock 2003; Lock et al. 2000; Rabinow 1999; Rose 1999, 2007; Thompson 2005). A paradigm shift in the provision of health—from the diagnosis and treatment of disease through clinical mediation to the emphasis on risk factor analyses and prevention—has also ensued because of these broader changes in life and labor. The science and practice of HIV/AIDS prevention, for example, focus on specific personal behavioral risk factors and concentrate primarily on obtaining explanations for differentials in HIV/AIDS rates at the level of individual variation (Parker 2001). Although social and structural factors have been slowly incorporated into broader public health discourses, variations based on social differences (such as race, ethnicity, culture, and nationality) and individual behavioral traits (for example, having sex with men, for men, and the use of intravenous drugs, for everyone) ha...

Table of contents

• Title Page
• Copyright Page
• Dedication
• Contents
• List of Figures and Tables
• Acknowledgments
• 1. Treating Us, Treating Them
• 2. Treating the Numbers: HIV/AIDS Surveillance, Subjectivity, and Risk
• 3. Treating Culture: The Making of Experts and Communities
• 4. Treating Citizens: The Promise of Positive Living
• 5. Treating the Nation: Health Disparities and the Politics of Difference
• 6. Treating the West: Afterthoughts on Future Directions
• Notes
• References
• Index
• About the Author