Inconvenient Truths | The Nation


Inconvenient Truths

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Eduardo Verdugo/AP ImagesDelegates marching at the International AIDS Conference

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Steven Epstein
Steven Epstein is the John C. Shaffer Professor in the Humanities and a sociology professor at Northwestern University...

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In April 1985, more than 2,000 people from thirty countries made their way to Atlanta for the world's first International AIDS Conference. The epidemic was four years old, and President Ronald Reagan had not yet uttered the name of the disease in public. There were no treatments for HIV infection. The next year, William F. Buckley Jr. would propose in an op-ed in the New York Times that "everyone detected with AIDS should be tattooed in the upper forearm, to protect common-needle users, and on the buttocks, to prevent the victimization of other homosexuals." In Atlanta, conferencegoers noted the "remarkable mixture of participants," which reflected, even by this early date, how different the politics surrounding AIDS was from that of most other medical conditions. "Doctors and scientists of almost every discipline [were] rubbing elbows with gay activists and media personalities," according to the newsletter of a gay doctors' group.

Over the years, as a hybrid and increasingly global mix of AIDS warriors has pursued prevention, treatments and social change, the international conference has found its way to Berlin, Barcelona and Bangkok, to Yokohama, Durban and Toronto. (The United States may soon be back on the list as a potential host, now that Congress has removed the statutory basis for an infamous ban on the entry of HIV-positive people into the country.) This August marked the seventeenth such event, with 24,000 participants from 194 countries converging on the giant Centro Banamex in Mexico City. What has remained constant over the years is how this hyperkinetic and multifaceted convocation--part celebrity showcase, part media circus, part pharma trade show, part networking extravaganza, part activist stage and, yes, part scientific meeting--has seemed to embody central elements of the AIDS phenomenon. It has shown clearly how the response to AIDS has taken shape as a heterogeneous global industry, and it has raised the perennial question of who really "owns" AIDS and thereby gets to say what should be done about it. And as the tally of infection has climbed upward over the years, the conference has also epitomized the ultimate limitations of the now vast and impressive scientific and political campaigns being waged against this epidemic.

As early as 1990, the activist and scholar Cindy Patton described, in her book Inventing AIDS, the emergence and worrisome growth of an "AIDS industry" that seemed to have taken on a bureaucratic life of its own and imposed its monolithic vision of the problem and its solutions. In The Wisdom of Whores, AIDS industry insider Elizabeth Pisani airs the latest dirty laundry. A journalist turned epidemiologist who has consulted for governments and NGOs around the world and particularly throughout Asia, Pisani holds a dim view of business as usual by the AIDS establishment, from the global health agencies on down. In this bracing account, Pisani is especially concerned about the impact of the recent flood of funding--by 2007, she notes, global expenditures on HIV in developing countries had reached $10 billion a year, more than has ever been spent on a single disease--which inevitably draws in "people who don't really care about the problem, who are truly queasy about sex and drugs, but who want some of the cash." In this "Be careful what you wish for" story, Pisani claims that now that AIDS has become a "boom industry," we've learned that "money can actually be an obstacle to doing the right thing."

Pisani has written a first-person narrative that brings the reader along on her odyssey through a range of distinctive subcultures in which she has found herself in recent years, from the number crunchers in the corridors of UNAIDS (the Joint United Nations Program on HIV/AIDS) in Geneva to the transgender sex workers doing HIV prevention on the streets of Jakarta. And it is clear from the outset that Pisani is not just a character in her own book but also very much a "character." She presents herself as brash, quirky, salty, spicy, tart and unapologetically blunt--a "flame-throwing epidemiologist" (as advertised in the publicity materials) who, OK, may be a bit of a nerd but is plenty of fun to hang out with, gossiping over drinks. The elaboration of this persona--the brainy "bad girl" insider/outsider--is then meant to warrant her credibility as someone who can really lay it on the line, take on every sacred cow and puncture the pretensions of political correctness whenever and wherever they appear.

This gambit makes for good reading and, sometimes, useful interventions in the policy arena. Pisani details the absurdities of Bush-era funding priorities--manifested, in one case, in a reporting requirement to document the "number of faith-based laboratories" available to provide HIV testing. And who could object to her questioning of policies that force USAID to buy condoms in Alabama and ship them to Indonesia, India and China, where they could have been bought in the first place for less than half the price? One might even go part way in accepting Pisani's claim that the pivotal AIDS activist demand to give voice to HIV-positives has been co-opted and institutionalized by the AIDS industry under the official acronym GIPA--Greater Involvement of People with AIDS--sometimes resulting in the dogmatic insistence that those who are infected with HIV are inevitably best positioned to lead the charge against the epidemic. "HIV is a virus, not a job qualification," Pisani observes. But it's easier to take potshots at political correctness and present oneself as the most virtuous person in the room than it is to call attention to the many shades of gray that coat problems as multidimensional and intractable as HIV/AIDS.

For example, Pisani takes aim at (and confesses her past complicity in contributing to) the AIDS industry scaremongering that has sought to drum up support for HIV/AIDS initiatives by suggesting that "everyone is at risk" or that the kind of generalized epidemic found among heterosexuals in sub-Saharan Africa is also likely to develop in populous Asian countries. But while it's never a good idea, in the long run, to "beat up" the numbers, as she puts it, one does not want to feed the backlash, either--to encourage the increasingly voiced opinion that AIDS is not really such a big global threat and that the money devoted to it might be better spent on other diseases (an argument that predictably tends to foreclose the option of spending more money on health promotion in general and less on other things). Pisani doesn't believe that HIV/AIDS is a small problem; she notes that the scope of the epidemic in Asia will be enormous even if restricted to sex workers and their clients, drug injectors and men who have sex with men. Nevertheless, her arguments sometimes veer close to those of critics who maintain that the epidemic threat is simply overblown.

By contrast, in other cases Pisani provides a valuable service by forcing the reader to grapple with inconvenient truths. For example, as the AIDS industry has ramped up its support for treatment-access programs in the global South--a cause that George W. Bush and even the late Jesse Helms could get behind in a big way, because it fits traditional models of charity and doesn't require dwelling on the "nasty" details of HIV transmission--the risk is that HIV prevention is being left by the wayside. The official response from many quarters is that this isn't really too much of a problem because, after all, treatment is prevention. That is, antiretroviral (ARV) therapy reduces the viral load of those being treated, making them less likely to infect their sexual partners. This reasoning is sound as far as it goes, and it received much discussion at the Mexico conference, but Pisani points out the fatal flaw: the more effective the ARV therapy, the longer the infected person lives, and the more likely he or she is to remain healthy and sexually active. Therefore, the more treatment one provides in a given country, the higher the objective need for prevention campaigns. While effective prevention programs may ultimately make treatment less necessary, effective treatment programs simply don't make prevention less necessary. The stakes here are well illustrated by a UN progress report issued this summer. According to the report, in 2007 nearly a million people began ARV treatment in developing countries, while 2.5 million became infected with HIV.

Also standing out as a particular benefit of The Wisdom of Whores is Pisani's capacity to reflect critically on the nuts and bolts of epidemiological work and describe the limitations of research when it collides with real-world complexity. Too many interview schedules that inquire into personal histories of risky practices, she says, "ask people to remember things they can't remember, or to calculate things they can't calculate." Too often, statistical extrapolations are drawn from samples of a population that are simply not representative. And the careful preparation of questionnaires that list a box for every official HIV risk category may miss the point that "real people don't have sex in boxes"--a problem Pisani illustrates nicely with the story of Fuad, an Indonesian man she interviewed who called himself heterosexual, had regular sex with a girlfriend/sex worker but also paid for sex with transgender sex workers while earning money on the side from other men who paid him for sex. As Pisani notes, Fuad "pushed a lot of the 'high-risk' buttons for HIV infection, yet he wasn't a female sex worker, a client, a drug injector, a gay man or a student. He didn't fit into a single one of our questionnaire boxes." Figuring out what to do with people like Fuad--how to count them, and how to reach them through HIV-prevention campaigns--is one of many crucial tasks in the development of an effective science and politics of HIV/AIDS.

Like Elizabeth Pisani, Jonny Steinberg makes himself into a central character in his beautiful and perceptive book, Sizwe's Test. But Steinberg (twice the recipient of South Africa's highest prize for nonfiction) is as quiet and unobtrusive as Pisani is demonstrative and ever-present. Though the book revolves around his complicated friendship with a young South African villager pseudonymously named Sizwe Magadla, Steinberg allows most of the book to pass before telling us about his own past and identity and how they intersect with the book's central concerns. Yet Steinberg's status as narrator-on-the-periphery proves entirely appropriate for a book that deliberately positions itself on the anthropological margins of the fight for AIDS treatment access in the global South.

The larger story here is a fascinating chapter in the modern history of global health politics. By 1996 combination drug therapy was being heralded in wealthy countries for its "Lazarus effect" in bringing many HIV-positive people back from the brink of death. Yet sub-Saharan Africa, currently home to 22 million of the 33 million people living with HIV/AIDS around the world, was essentially written off. Prevention campaigns were fine for the developing world, but ARVs were too costly to introduce there; moreover, the public health infrastructure was too primitive to support them, and the uneducated inhabitants of poor countries, it was argued, could not be counted on to maintain a vigilant adherence to multidrug treatment, the failure of which would promote the spread of drug-resistant strains of the virus. Steinberg notes that, as late as 2001, Andrew Natsios, the head of USAID, warned about wasting money by providing medications that would have to be taken on a regular schedule twice a day for life. In Africa, Natsios explained, "people do not know what watches and clocks are. They do not use Western means for telling time. They use the sun."

Yet this conventional wisdom was in the process of being shattered by a series of unanticipated developments. Beginning in the late 1990s, a transnational alliance of treatment activists helped to put pressure on funders to cough up significant sums for ARVs. By 2001 chemists in India (and later in Brazil) had broken the patents on expensive, brand-name ARVs by "reverse engineering" the drugs and producing generic versions that could be sold at a fraction of the cost. And groups like Médecins Sans Frontières (MSF, or Doctors Without Borders) had set up shop in sub-Saharan Africa, pioneering programs that soon demonstrated to just about everyone's satisfaction that it was possible to obtain rates of adherence to ARV regimens that closely resembled those in the affluent urban centers of the global North. Notwithstanding many obstacles that in the case of South Africa notably included a deep suspicion of ARVs by President Thabo Mbeki, the stage was set for a fundamental transformation in the approach to AIDS management in the countries that were suffering the most from its devastating effects.

Steinberg tracks this effort by following MSF to the remote rural district of Lusikisiki in Eastern Cape province, South Africa, where the average monthly income, among the few who hold jobs, is less than $140. Here, in a village lacking electricity and running water, located nine unpaved miles from the nearest health clinic, he befriends Sizwe, a young man who "was healthy and strong and had never tested for HIV." Steinberg wants to know why not. Despite their disparate backgrounds--Steinberg is white, gay and urban; Sizwe is black, heterosexual and has lived all his life in the village--the two young men find affinity in their distrust of conventional wisdom. As their conversations unfold and their intimacy and mutual empathy deepen over many months, Steinberg comes to realize that he doesn't want to write the book he had first imagined, one that recounts the successes of MSF in disseminating ARV treatment. Instead, it is Sizwe--"a skeptical man on the margins of [the] program"--his book should revolve around. In the eloquent narrative that recounts the conversations between the two men and explores the embeddedness of Sizwe's life in the history of his community, Steinberg demonstrates how compellingly one can paint a picture of broader social structures and social change by zooming in on the private troubles, desires and yearnings of a single individual.

We never learn why Sizwe resists taking the test that, depending on the result, could set his mind at ease or lead him to receive life-saving treatment. However, over the course of the book, Steinberg suggests many explanations that are not mutually exclusive. Sizwe, it seems, lacks faith in the capacity of the MSF program not only to accomplish its biomedical tasks but also to shelter him from the devastating symbolic consequences of testing positive--the loss of identity and status, the sense of inescapable contamination. Sizwe "lives in a space the MSF program has not penetrated: he is the embodiment of the program's limits." His responses thereby shed light on the remarkable characteristics of the ARV treatment program.

As Steinberg explains, such treatment has succeeded in South Africa through its metamorphosis into a social movement that combines the inspired work of MSF with the innovative activism of the grassroots Treatment Action Campaign (TAC). MSF challenged the presumption that ARVs were complex stuff that only urban medical specialists could administer; they "declared, by simple fiat, that it was not complicated medicine, that the knowledge required to make it successful could be condensed into simple codes and distributed among nurses, laypeople, and ARV users themselves." This packaging of ARVs as a standardized and transportable technology was further enabled by TAC, which trained laypeople to perform HIV testing and counseling and to run the support groups that promote drug adherence. Melding the tactics and symbolism of ACT UP with that of South Africa's antiapartheid movement, TAC took old freedom songs and gave them new lyrics about blood tests and ARVs. The twin symbols of this joint effort between MSF and TAC were the ubiquitous plastic pillboxes, their fourteen compartments labeled "Sunday" through "Saturday," "morning" and "evening"; and TAC's "HIV Positive" T-shirts, the wearing of which performatively declared an end to silence and invisibility.

Together, MSF and TAC helped the newly treated to develop what Steinberg calls "a lively relationship with their medicines, a relationship at once emotional and cognitive." HIV patients "must know the name of each pill, its shape, its color, its nickname, all its potential side effects. They are stuck with these tablets for their lives." And this relationship with one's pills implied, as well, a new relationship with oneself, expressed in a responsibility to monitor the invisible indicators of bodily states--CD4 counts, viral loads--that reflect the vicissitudes of antiviral treatment. Scholars of biomedicine in the West have characterized similar developments in healthcare as the promotion of a new form of "governmentality," a kind of self-regulation that corresponds to a neoliberal political moment in which the state has withdrawn and left it up to individuals to assess their risk and care for themselves. But the South African story is not one about isolated individuals left to their own devices. Rather, it is the social movement and, more concretely, the support group that become the loci of self-surveillance and mutual aid.

The problem for Sizwe is that this collective embrace is precisely what he doesn't want. To him, the treatment campaign is not a social movement at all but a "cult," with its own prescriptive rituals and dogma. For example, initiates are required to renounce alcohol and tobacco, which seems to have more to do with submission to the power of the group than with any scientific evidence about how these substances interact with ARVs. Most notably, support-group meetings are held outdoors on clinic grounds: "That they are conducted out in the open, in full view of passersby, is both their signature and an emblem of their most urgent aspiration: to take the virus and those it afflicts from their secret places of shame." But to Sizwe, such openness in a region like Lusikisiki would in fact reinforce stigma as effectively as, say, the tattoos that Buckley proposed in 1986. Being "outed" in his community is an intolerable risk, one that would drown out the benefits that might accrue from the medications.

Steinberg is insightful in exploring why South Africa's ARV program may not work for everyone, and he also considers the important issue of the longevity of the program after the departure from the scene of the MSF physicians. One dilemma that receives only a few sentences in his account is also crucially relevant for the continued success of the program. Even if patients adhere perfectly to their regimens, eventually the drugs will stop working their magic as the virus in their bodies mutates and develops the capacity to resist the drugs. In the global North, the best solution to this problem so far has been an ever-expanding array of ARVs--a few dozen that may be taken in many possible combinations--accompanied by expensive assays that track the development of resistance and help predict beneficial alternatives. In places like South Africa, there is no generally available second-line treatment. The need to grapple with this problem, as well as to imagine new ways of preventing infection in the first place, brings us back squarely to Pisani's terrain. Sizwe's story may lead us deep into the recesses of his mind, but it also leaves us with broad questions about the priorities of the AIDS industry and its long-term capacity to advance health on a global level.

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