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A New World of Health
The Right to a Nonprojected Future
In his book A Bias for Hope, economist Albert O. Hirschman (1971) challenges social scientists to move beyond categorical prejudgments, beyond the sole search for general laws and orderly sequences of what is required for wider social and political transformation. Having in mind the Latin American countries in which he worked (including Brazil), Hirschman challenges us, instead, to engage the unexpected.
The study of how beliefs, attitudes, and values are refashioned and molded by “more or less accidentally undertaken practices,” Hirschman argues, “widens the limits of what is or is perceived to be possible, be it at the cost of lowering our ability, real or imaginary, to discern the probable”
(p. 28). At stake is helping “to defend the right to a nonprojected future as one of the truly inalienable rights of every person and nation; and to set the stage for conceptions of change to which the inventiveness of history and a ‘passion for the possible’ are admitted as vital actors” (p. 37).
This book addresses the crucial question of what happens when such luminous prospects of social science are politically and technologically operationalized. Brazil has, against all odds, invented a public way of treating AIDS. In 1996, it became the first developing country to adopt an official policy that universalized access to antiretroviral drugs (ARVs), about five years before global policy discussions moved from a framework that focused solely on prevention to one that incorporated universal treatment. Some 200,000 Brazilians are currently taking ARVs that are paid for by the government, and this policy is widely touted as a model for stemming the AIDS crisis in the developing world. This life saving policy came into existence through an unexpected alliance of activists, government reformers, development agencies and the pharmaceutical industry. Will to Live moves between a social analysis of the institutional practices shaping the Brazilian response to AIDS and the stories and lives of people affected by it.
HIV/AIDS is the first major epidemic of present-day globalization. Of more than 40 million people estimated to be HIV-infected worldwide, 95 percent live in middle- or low-income countries, causing life expectancy to drop dramatically in those countries worst hit. In late 2003, with only about 400,000 people receiving treatment, the World Health Organization (WHO) and the Joint United Nations Programme on HIV/AIDS (UNAIDS) announced their goal of having 3 million HIV-positive people on antiretroviral therapy by 2005. The results have been mixed, but by any account Brazil has been a leader in the effort to universalize access to treatment. By the end of 2004, the number of people on ARVs had increased to 700,000 globally—in the developing world, this figure stood at 300,000, of which half lived in Brazil (UNAIDS 2004). And when the deadline arrived at the end of 2005, with an estimated 6.5 million people requiring treatment, 1.2 million were on ARVs—encouraging, but still short of the target (UNAIDS 2006). Brazil, with less than 3 percent of the world’s HIV/AIDS cases, still accounted for nearly 15 percent of people on ARVs.
Throughout this book, I examine the value systems and the political and economic factors underlying the Brazilian AIDS policy, and identify the novel power arrangements (both national and global) that are crystallized in the policy, in its articulation and implementation. As I probe the policy’s social and medical reach, particularly in impoverished urban settings where AIDS is spreading most rapidly, I also inquire into the micro-politics and desires that invest ARVs, making survival possible.1 I draw from research I carried out over the past ten years among people working in state, corporate, scientific, and nongovernmental institutions, and also from fieldwork among marginalized AIDS patients and grassroots care services.
To understand the radically different world of AIDS post-treatment access I had to move in time and space, back and forth between a difficult analysis of how the afflicted understand themselves—born of careful ethnographic work and long-term conversations I was privileged to have—and a more experience-distant investigation into how therapeutics mix with activism and political economy: locally, nationally, and globally.2 Fieldwork allows us to see these various actors and forces at work, reminding us that there is no short cut to understanding the multiplicities of reality and the practical articulations through which technologically extended life happens. Ethnography remains, in my view, a vital social scientific antidote to what Hirschman identifies as “compulsive and mindless theorizing.” As he writes, “Quick theoretical fix has taken its place in our culture alongside the quick technical fix” (1970, p. 329).
Although much of my research stands within the traditional boundaries of ethnography (charting the lives of individuals and institutions over time through open-ended interviews and participant observation), I also make use of alternative forms of evidence—some of them quantitative—developed in collaboration with researchers and practitioners from other disciplines, including epidemiology. Yet during my fieldwork, I often found myself returning from what I “[saw] and heard with bloodshot eyes and pierced eardrums.”3 Where words and numbers fell short, I teamed up with photographer Torben Eskerod; his photographs, interspersed throughout these pages, highlight the plight and singularity of the abandoned AIDS patients with whom I worked.
Examining this constellation of evidence from an anthropological perspective sheds light on how scientific and technological developments, medicine, and political-economic institutions do their work over time and across cultures. Biotechnological innovations engender unlikely coalitions that both expose the inadequacies of reigning public health paradigms and act to reform, if to a limited extent, global values and mechanisms (of drug pricing and types and scope of philanthropic and humanitarian interventions, for example). Mediated by an activist state, these therapeutic coalitions also expose national contradictions and bring about novel institutions, modes of life, and inequalities. Brazil’s response to AIDS thus provides a unique opportunity both to apprehend shifting public-private involvements in a neoliberal landscape and to assess their immediate and long-term effects.
Some of the questions that guided my ethnographic and social epidemiological investigation include: Which public health values and political and technological practices make this therapeutic policy possible, and what guarantees its sustainability? How has the AIDS policy become a kind of public good, emblematic of the state’s universal reach, even though it is not enjoyed by all citizens? What networks of care emerge around the distribution of lifesaving drugs? How do the poorest understand and negotiate medical services? How do their lifestyles and social support systems influence treatment adherence? What happens to poverty as these individual sufferers engage the pharmaceutical control of AIDS? What do these struggles over drug access and survival say about the state of human rights, politics, and equity on the ground and globally? Which forms of health are sufficient to liberate life, wherever it is confined?
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