The Republic of Therapy: Triage and Sovereignty in West Africa's Time of AIDS

by Vinh-Kim Nguyen

Overview

The Republic of Therapy tells the story of the global response to the HIV epidemic from the perspective of community organizers, activists, and people living with HIV in West Africa. Drawing on his experiences as a physician and anthropologist in Burkina Faso and Côte d'Ivoire, Vinh-Kim Nguyen focuses on the period between 1994, when effective antiretroviral treatments for HIV were discovered, and 2000, when the global health community acknowledged a right to treatment, making the drugs more available. During the intervening years, when antiretrovirals were scarce in Africa, triage decisions were made determining who would receive lifesaving treatment. Nguyen explains how those decisions altered social relations in West Africa. In 1994, anxious to "break the silence" and "put a face to the epidemic," international agencies unwittingly created a market in which stories about being HIV positive could be bartered for access to limited medical resources. Being able to talk about oneself became a matter of life or death. Tracing the cultural and political logic of triage back to colonial classification systems, Nguyen shows how it persists in contemporary attempts to design, fund, and implement mass treatment programs in the developing world. He argues that as an enactment of decisions about who may live, triage constitutes a partial, mobile form of sovereignty: what might be called therapeutic sovereignty.

Product Details

ISBN-13:	9780822348740
Publisher:	Duke University Press
Publication date:	11/01/2010
Series:	Body, Commodity, Text Series
Pages:	252
Product dimensions:	6.10(w) x 9.20(h) x 0.70(d)

About the Author

Vinh-Kim Nguyen is Associate Professor of Social and Preventive Medicine in the School of Public Health at the University of Montreal.

Read an Excerpt

THE REPUBLIC OF THERAPY

Triage and Sovereignty in West Africa's Time of AIDS

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By VINH-KIM NGUYEN

Duke University Press

Copyright © 2010 Duke University Press
All right reserved.
ISBN: 978-0-8223-4874-0

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Chapter One

TESTIMONIALS THAT BIND

Organizing Communities with HIV

In 1990, a young man named Abdoulaye traveled from Abidjan to Ouagadougou, six hundred kilometers to the north in Burkina Faso, where he went on to found a youth group, Jeunes sans frontières (Youth without Borders). He had just turned twenty-seven when I first met him in 1995. I begin with Abdoulaye's story because it reveals the complexity of organizing communities living with HIV in West Africa. There, the impact of international efforts to organize communities with HIV intersected in unpredictable ways with everyday attempts to grapple with matters of life and death. Western assumptions that solidarity and self-help could result from a shared biomedical condition were lost in translation. Abdoulaye's story shows how this happened.

Shy and soft-spoken, with a tendency to speak quietly while using a self-effacing first person plural, for those around him, Abdoulaye was different from others his age. His uncles treated him almost as an equal, according him more respect than those in his age-class and more even than his older brother. That this never caused any tension was evidence of Abdoulaye's skill at balancing the needs of family hierarchy with his own aspirations. Neither he nor his cousins and friends attributed this to his personality-for them, it came from his being born south of the border in Abidjan and being wise in the ways of fast life in the big city. Work motivated Abdoulaye's parents to move to Abidjan in the 1960s, when the Ivoirian economic "miracle" was still in full swing, fuelled by favorable global market prices for the country's primary exports of cocoa and coffee. Abdoulaye's parents found work in the booming economy: his mother in a plastics factory and his father at the port, the major clearinghouse along the coast for the interior and the landlocked countries of Mali, Burkina Faso, and Niger to the north. In their trek south, Abdoulaye's parents had followed a well-worn path-the migration route between Burkina Faso and Côte-d'Ivoire dates from the earliest colonial times.

Abdoulaye grew up in the Abidjan township of Anoumabo, formerly an Ébrié village on the lagoon, which had long ago been swallowed up by the sprawl of the city and had become home to many Burkinabè. His older brother stayed, their father having found him a job at the port, but Abdoulaye wanted to continue his schooling. Abdoulaye's family could not afford to keep him in school in Côte-d'Ivoire, where school fees were higher, and foreigners were not eligible for the few scholarships available. So, after he finished his secondary school in Abidjan, Abdoulaye returned to Ouagadougou to go to university in 1990. Once there, he moved into the ancestral home: a cement house around a courtyard, inhabited by his father's three brothers, each with three wives, and each with "five or six" children. The family got by reasonably comfortably; although illiterate, the uncles were successful merchants, and the wives managed small businesses out of the home. They sold charcoal, made fried doughnuts to sell to passers-by, and used the capital they accumulated to buy bags of rice and millet that they resold in smaller parcels.

Abdoulaye spent a year at the university in Ouagadougou, but the transition was difficult. Ouagadougou was not like Abidjan, and he couldn't shake the feeling that he didn't quite belong. Perhaps this was why Abdoulaye became interested in the way others his age lived in Ouagadougou and the problems they faced. Maybe his desire to be involved was a way to reconcile his feelings of being different. With his analytic mind and good writing skills, Abdoulaye quickly learned that he didn't need to finish university to make a niche for himself. He experimented with writing project proposals for development agencies, and some of them were funded. Ouagadougou had become a center for these agencies for several reasons; droughts had devastated the countryside, and Burkina had a reputation for being receptive to development agencies. After the droughts of the 1970s had thankfully passed, the development agencies stayed to focus on other problems, including family planning. Abdoulaye came along when family planning had already been embraced as the solution to poverty and attention was beginning to turn to the importance of educating young girls about contraception. These interventions were the forerunners of subsequent AIDS-education campaigns.

Organizations such as Abdoulaye's did not work in a vacuum; it was their embeddedness in local social relations and networks of obligation and reciprocity that gave them their credibility and the local knowledge that was so valuable to international agencies. A large part of their work as subcontractors to large development agencies was to translate these social policies into locally meaningful knowledge and practice. Jeunes sans frontières invested family-planning money in creating jobs for local youth as peer-educators or outreach workers. In exchange for the labor that kept projects going, Abdoulaye paid his youthful charges a decent wage. Their enthusiasm impressed the organization's funders. Shrewdly, the organization used these investments to develop a multivalent infrastructure-neighborhood kiosks, a central office, scooters-onto which other money-generating projects could be piggybacked.

Abdoulaye and I often met at the Jeunes sans frontières office, which served both as a headquarters and a social center. Young men and women, presumably from the group's various "antennae" (as Abdoulaye liked to call them) in the city, would drop by on errands or to request advice, more often than not lingering, the women chatting outside or the young men draping themselves over the three rickety chairs grouped around a table. Gradually I would learn that many of these young people, the inner circle of the organization, were related to Abdoulaye as cousins, brothers, or sisters. Abdoulaye relied on family members, not so much as a result of crude patronage, but because the presence of kinship ties meant that these individuals could be trusted. In a setting of dire poverty and social precariousness, it was difficult to trust people one did not know and who were not tied by the obligations kinship afforded. Others who joined the organization and established a reputation for reliability and "seriousness" became like family. Some even moved into Abdoulaye's family's compound.

As in many parts of the world, in Ouagadougou people live in extended families, sharing a series of rooms organized around a central courtyard where meals are cooked. Kinship was an idiom for describing social relatedness, not so much in defining one's identity as in identifying to whom one may turn in a time of need. Abdoulaye was stitching together a network of social relations where kinship relations and obligations furnished the idiom through which accountability and hierarchy could be expressed and relationships valued. Jeunes sans frontières' success was less a product of good management practice than of Abdoulaye's skill at suturing this hybrid network of friends, family, and sympathizers to the abstract programs of international agencies. He capitalized on his kinship-ordered social relations to build a community organization; this was his "charisma." As will become clear over the next three chapters in this book, however, the idiom of kinship hides more than it reveals in this study of HIV groups.

New Opportunities with AIDS

By 1995 AIDS had become of major concern for development agencies. The epidemiological statistics were worrisome-the epidemic was exploding to the south, particularly in Abidjan, and the figures from Burkina seemed to indicate that the epidemic was also progressing there. It was widely believed that HIV traveled through the migratory system from Abidjan, thought to be the epicenter of the epidemic in West Africa, to Burkina Faso. Abdoulaye and his parents were part of the estimated three million Burkinabè who divided their lives between Burkina Faso and Côte-d'Ivoire (Cordell, Gregory, and Piché 1996). Some moved to Abidjan for work and then stayed, or else returned to Burkina for school. The more usual pattern was for young men to leave the agriculturally desolate areas of northern Burkina Faso to labor on the plantations or in the city (as servants, gardeners, car attendants, or working in any of the myriad jobs in the big city's informal economy) and then to return to the village to marry once they saved up enough money. It is this pattern that was believed to have extended the reach of the epidemic from the metropolis of Abidjan as far as the isolated villages on the edge of the Sahara, thousands of kilometers to the north.

When I first met him in 1995, Abdoulaye had already developed an impressive list of credentials. Several projects he had put together had been funded and successfully carried out. The introductions he was writing to his project proposals were ethnographic treatises in their own right, effortlessly citing demographic statistics alongside observations about the sexual lives of urban youth and incisive analyses about the cultural barriers to addressing issues of sexuality. Development agencies had been quick to respond, and Jeunes sans frontières had already been carrying out family planning education campaigns for two years. As a result, the organization had chapters in over a dozen neighborhoods. This had given Abdoulaye the opportunity to embellish his project proposals with the wealth of information he had gathered through his involvement in these campaigns.

For the family planning campaigns, Abdoulaye recruited articulate young people and trained them as peer-educators: youth that educate other youth about the importance of contraception. This allowed him to pay them modest fees from the contracts, and with the small overheads he earned from these, he was able to rent a modest office on a busy road not far from his house. When AIDS appeared on the agenda of the development agencies in 1994, the major emphasis was not on medical treatment-after all, even though anti-HIV drugs (antiretrovirals, or ARVS) had existed since the discovery of AZT in 1989, the lifesaving combination ARV "cocktails" had only been reported that year, and the drugs were prohibitively expensive, costing thousands of dollars a month. In Africa, then, the emphasis was on preventing HIV by raising awareness and encouraging condom use-the family planning strategy with which Abdoulaye and the group were most familiar.

Jeunes sans frontières' initial experience with HIV activities was during the World AIDS Day events, on 1 December, starting in 1993. Abdoulaye told me these were "great fun." The National AIDS Program could be counted on to hand out small grants to do "awareness-raising" during the government-organized AIDS parade, and the colorful NGO stands lent a festive air to the proceedings. There would be shows, giveaways of T-shirts and rubbers, and the obligatory displays of putting condoms onto wooden penises.

An Epidemic of Visibility

Given his experience with World AIDS Day and family-planning campaigns, Abdoulaye found it easy to retool his organization to respond to the development agencies' new priority. He told me he was glad he could stay in the business of educating people about sexuality; it was interesting, as was the research it entailed. He could investigate intriguing questions: why young girls would sleep with older men even if they had boyfriends (he found out it was to pay for school fees and clothes); why most of the tailors in Ouagadougou were Ghanaian (access to cheaper hair clippers in Ghana gave them a competitive advantage and they had cornered the market before anyone else). He could then use the answers to improve on subsequent project proposals.

The Jeunes sans frontières office was equipped with a typewriter and a shelf stacked with glossy family-planning brochures and decorated with three AIDS posters: One from Uganda showed a photo of a gaunt man with his two children on a bench and below, in English, "I had lost hope. You counseled me. TASO-The AIDS Support Organisation." Another poster, this one from Côte-d'Ivoire, featured a dying man on a cot in a hospital, his eyes blanked out with a black rectangle: "I have AIDS. Don't abandon me. National AIDS Control Programme." The third, from America, had an incongruously colorful picture of the virus and its genetic components. Although lit by a naked light bulb, the office still appeared dark, with green walls and a ceiling fan that always seemed ineffective against both the heat and the dust on the brochures. The images on these posters were still a distant reality for Abdoulaye. He knew the figures for Burkina (at the time 10 percent of the population was estimated to have been contaminated by HIV; that figure is now recognized to have been an overestimation6), but he had never met anyone who was HIV positive. Nonetheless, he believed the problem was there. He knew most youth didn't use condoms, and given the statistics, it was evident that the virus was spreading. In this, Abdoulaye had come to the same conclusion as the development agencies. This was why, by late 1995, international agencies were getting concerned about the HIV epidemic. Despite the proliferation of condom promotion campaigns, they had the nagging sensation that no one was taking the problem seriously enough. "It's all just theater," one development official told me, adding "IEC [Information-Education-Communication, as such condom promotion campaigns were called] activities won't lead to sustainable behavior change." For the international agencies, the proof was that no one seemed to talk about AIDS "unless they're paid to." There were no press articles or other manifestations of "genuine concern." The term "silent epidemic" was used interchangeably with "invisible epidemic" to describe the situation, which was inevitably contrasted with the alarming figures drawn from seroprevalence studies.

Both officially and off the record, the lack of "visibility" of the epidemic was decried as a major "barrier" to combating the disease and evidence of "denial." These claims would have been bolstered by a visit to the local hospital; there, the epidemic was clearly visible to the clinically trained eye. Physicians who practiced in Burkina's public health system privately acknowledged seeing clinical cases of AIDS starting in the late 1980s, but were unable to confirm their suspicions because of the lack of tests and the impression that diagnosing HIV infections was not really considered important at the time.

This clinical visibility didn't translate into the kind of visibility the development agencies wanted. In the early years, HIV-testing kits were rarely available, and even if they were, patients were still not told of their diagnosis. Winston, a nurse in one of the main medical wards, once showed me a stack of patients' charts in the small room where he slept on night shifts. Patients with positive tests results had the result clearly indicated, with the hospital's diagnostic code for HIV infection ("1762") on their chart; about three-quarters of the patients in this ward had the number inked in red on their charts. However, only a handful had the letter "A" (for "announced") beside it, meaning that they had been told. Winston gave a simple reason for not informing the patients: "Patients aren't told because it would only discourage them." In his experience, patients who were told went on to die very quickly. His ward was divided into two sections-one for more acute cases and one for more chronic cases. Patients with HIV were triaged to the chronic section. But, Winston explained, "once an HIV patient gets transferred to the chronic section, he realizes that he has HIV even if he hasn't been told, and he rarely lasts more than a few days."

Abdoulaye, meanwhile, was encouraged that two of his projects, which had been funded by a European embassy and a British organization, were underway and seemed to be working, at least in terms of the goals he had set for them. Young women were buying and reselling condoms he was purchasing from an American social marketing program, as were the young Ghanaian barbers whom he supplied with condoms and had persuaded to use disposable razors.

(Continues...)

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Excerpted from THE REPUBLIC OF THERAPY by VINH-KIM NGUYEN Copyright © 2010 by Duke University Press. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents

Acknowledgments ix

Introduction Côte-d'Ivoire and Triage in the Time of AIDS 1

1 Testimonials That Bind: Organizing Communities with HIV 15

2 Confessional Technologies: Conjuring the Self 35

3 Soldiers of God: Together and Apart 61

4 Life Itself: Triage and Therapeutic Citizenship 89

5 Biopower: Fevers, Tribes, and Bulldozers 111

6 The Crisis: Economies, Warriors, and the Erosion of Sovereignty 137

7 Uses and Pleasures: The Republic Inside Out 157

Conclusion Who Lives" Who Dies" 175

Notes 189

References 205

Index 229

Editorial Reviews

Neither activist, nor politician, nor patient, nor pharmaceutical provider, Nguyen brings a more objective perspective to the AIDS crisis, even as he gives a first- hand account and conveys his close relationships with HIV-positive patients. A telling and provocative study of AIDS treatment in Africa, The Republic of Therapy offers no prospective solutions, but highlights the complexities and power dynamics inherent in the process of intervention.

Montreal Review of Books - Sarah Fletcher

[A] book that can and will be read by audiences far beyond the domain of medical anthropology. The resultant volume captures the evanescent history of a slowly developing crisis within the rapidly changing landscape of postcolonial health in sub-Saharan Africa. In this unsparing and clear-eyed account, Nguyen admirably sets forth the difficult but necessary task for contemporary social scientists in the critique of global health practices.

Journal of the History of Medicine and Allied Sciences - Jeremy A. Greene

This work is notable not only for the quality of its craft but also the degree to which it lends a personal face to political and economic crisis.... Written in lucid, largely understated prose and drawing on the author’s long experience as both physician and anthropologist, the result is sure to provoke discussion and reaction well beyond the discipline.

American Anthropologist - Peter Redfield

Neither activist, nor politician, nor patient, nor pharmaceutical provider, Nguyen brings a more objective perspective to the AIDS crisis, even as he gives a first- hand account and conveys his close relationships with HIV-positive patients. A telling and provocative study of AIDS treatment in Africa, The Republic of Therapy offers no prospective solutions, but highlights the complexities and power dynamics inherent in the process of intervention.” - Sarah Fletcher, Montreal Review of Books


“[A] book that can and will be read by audiences far beyond the domain of medical anthropology. The resultant volume captures the evanescent history of a slowly developing crisis within the rapidly changing landscape of postcolonial health in sub-Saharan Africa. In this unsparing and clear-eyed account, Nguyen admirably sets forth the difficult but necessary task for contemporary social scientists in the critique of global health practices.” - Jeremy A. Greene, Journal of the History of Medicine and Allied Sciences


“[P]ath-breaking. . . . Nguyen’s strengths as an ethnographer are his capacity to move among different organizations and institutions, his sensitivity to the roles he plays in these contexts, and his long-term engagement with local activists and other informants, and he parries these strengths into a nuanced account of the urban politics of triage and HIV in West Africa.” - Betsey Brada, Somatosphere


“This work is notable not only for the quality of its craft but also the degree to which it lends a personal face to political and economic crisis.... Written in lucid, largely understated prose and drawing on the author’s long experience as both physician and anthropologist, the result is sure to provoke discussion and reaction well beyond the discipline.” - Peter Redfield, American Anthropologist


“The activist, physician, and anthropologist Vinh-Kim Nguyen has written an engaged, rigorous, and compelling account of the years when, in West Africa, AIDS treatment started to become available and persons living with HIV began to organize. With insight and sympathy, he explores how new political forms were thus invented in Côte d’Ivoire and Burkina Faso, combining therapeutic sovereignty and health democracy, triage of patients and empowerment of communities, confessions and accusations.”—Didier Fassin, author of When Bodies Remember: Experiences and Politics of AIDS in South Africa

From the Publisher

[P]ath-breaking. . . . Nguyen’s strengths as an ethnographer are his capacity to move among different organizations and institutions, his sensitivity to the roles he plays in these contexts, and his long-term engagement with local activists and other informants, and he parries these strengths into a nuanced account of the urban politics of triage and HIV in West Africa.

Somatosphere - Betsey Brada