TEST1 Second Chances: Surviving AIDS in Uganda

by Susan Reynolds Whyte (Editor)

Overview

During the first decade of this millennium, many thousands of people in Uganda who otherwise would have died from AIDS got second chances at life. A massive global health intervention, the scaling up of antiretroviral therapy (ART), saved them and created a generation of people who learned to live with treatment. As clients they joined programs that offered free antiretroviral medicine and encouraged "positive living." Because ART is not a cure but a lifelong treatment regime, its consequences are far-reaching for society, families, and individuals. Drawing on personal accounts and a broad knowledge of Ugandan culture and history, the essays in this collection explore ART from the perspective of those who received second chances. Their concerns about treatment, partners, children, work, food, and bodies reveal the essential sociality of Ugandan life. The collection is based on research undertaken by a team of social scientists including both Western and African scholars.

Contributors. Phoebe Kajubi, David Kyaddondo, Lotte Meinert, Hanne O. Mogensen, Godfrey Etyang Siu, Jenipher Twebaze, Michael A. Whyte, Susan Reynolds Whyte

Product Details

ISBN-13:	9780822375975
Publisher:	Duke University Press
Publication date:	08/31/2018
Series:	Critical Global Health: Evidence, Efficacy, Ethnography
Sold by:	Barnes & Noble
Format:	eBook
Pages:	328
File size:	3 MB

About the Author

Susan Reynolds Whyte is Professor of Anthropology at the University of Copenhagen. She is the author of Questioning Misfortune: The Pragmatics of Uncertainty in Eastern Uganda, coauthor of Social Lives of Medicines, and coeditor of Disability in Local and Global Worlds.

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Second Chances

Surviving Aids in Uganda

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By Susan Reynolds Whyte

Duke University Press

Copyright © 2014 Duke University Press
All rights reserved.
ISBN: 978-0-8223-7597-5

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CHAPTER 1

Connections

Lotte Meinert, Phoebe Kajubi, and Susan Reynolds Whyte

For Robinah, the way into the treatment program that saved her life was through personal relationships: her kinship tie to her sister Joyce and her sister's link to a neighbor who was a field officer in the HBACprogram. In their accounts, Joyce and Robinah talked about how they took the steps to get tested and join a program by way of connections and with the support of other people. In principle—from a policy perspective—AIDS programs offer services to the population at large on an equal basis. But in practice, people learn about and gain access to these services through other persons. They achieve services with the help of others and are not simply caught up as individuals in a net thrown out by providers. Many people hear about testing and treatment options through various official channels and media. Yet the actual link between a program and a person is almost always mediated through a trusted social connection. Joyce had experienced her husband and children dying; she knew about HIV and AIDS. In her mind, she may have suspected an association between those losses and the symptoms she experienced. But in her telling of the story, she decided to go for an HIV test when a good colleague talked to her in private, made her reflect on her situation, and advised her to be tested. This emphasis on the sociality of decision making and action featured in most of the stories we heard about how the first generation came to take an HIV test and, in time, find a way into a treatment program. The weight given to the role of other people in helping to deal with problems was striking.

Personal relations involving proximity and reciprocity, expectation and obligation, are fundamental to getting things done in everyday life, as Patrick Chabal argues in his discussion of the politics of being and belonging in Africa. While this is true everywhere, it is especially pronounced in situations where bureaucratic institutions do not function optimally and where kinship provides a moral and practical framework for life. In this light, it is not surprising that our interlocutors talked about their movement into treatment programs in terms of connections. Yet to say that social links are important is not enough. In this first chapter, we want to examine the issue of connections more specifically and more critically. We describe the nature of the social relationships that mediated access and consider those cases in which people spoke about access as if it could be accomplished without personal mediation. Then we discuss the downside of a world in which there is so much emphasis on connections—that is, the inevitable inequities that arise because some people are better connected than others.

The analytical insight that people reach treatment through the efforts and connections of their family and friends is an old one in studies of African health care. Based on research in Zaire, John Janzen launched the notion of the therapy managing group (TMG), an alliance of kin, friends, and associates who guided a patient to one source of treatment after another in the quest for therapy among alternative possibilities. His point was that individuals did not reason completely autonomously in making decisions about treatment; rather, they were influenced and supported by people in their close networks. Janzen argued that the concept's value lay in focusing on the social process of treatment seeking. The alliance might include non-kin as well as family members, but the assumption was that all members of the network had a relatively enduring relationship to the patient.

Technical Know Who

To the concept of the TMG we add another, taken from Ugandan popular culture: the notion of "technical know who" (TKW), which refers to the widespread conviction that it is through personal contacts, and not only through knowledge (technical know-how), that things get accomplished. People and structures are activated and institutions are made to work effectively when you have a connection. When a sick person is going to a health center, concerned others will ask whether he or she knows anyone there, because everybody understands that having a link to someone who is employed at the health center—a doctor, a nurse, or even a guard or a cleaner—will make a difference in gaining access to treatment and avoiding long waiting hours. On the basis of her fieldwork in eastern Uganda, Hanne O. Mogensen writes: "I came across people who had never had the courage to turn up at a health facility. It can be difficult to find out where to start, where the line is, where to go next, who to ask, how to respond, how much to pay for what, where to get the medicine and so on. Knowing somebody—anybody—whether it is the gatekeeper or the anthropologist, may help one move in the right direction."

The usefulness of personal contacts is not limited to health care. Technical know who works in all sectors of society: to get a child admitted at one of the better schools in Uganda, it is very helpful to have connections to the school's management. People looking for work ask their friends and relatives for possibilities to connect and "fix" them in a job. The reliance on personal connections is part of the patterns of clientship and patronage that we discuss in chapter 2. But for the moment, we simply want to explore the ways people talked about getting tested and joining programs.

In strict terms, TKW deployed in relation to ART would entail being helped by a contact among the employees of a program, as Robinah was helped by Joyce's neighbor, the HBAC field officer. But knowing any health worker, even one who did not work for an ART program, was a very important kind of connection. People talked about how relatives or friends working in the health sector provided advice, suggested sources of treatment, and generally offered a kind of support that they felt was based on expert knowledge. In many cases, there was an overlap of TMG and TKW, when a health worker in the near network provided guidance or a family member or friend knew someone working in a program. The importance of the TMG and the use of TKW confirm the notion that access is mediated, whether we speak of the support and encouragement of close relatives, as Robinah received from her sister Joyce, or the contacts to health workers, as Joyce had to her neighbor, the HBAC field officer.

The dispersion and variety of AIDS programs and treatment sources in the Ugandan landscape is very uneven. In large urban centers, a dense jungle of programs offer various services of testing, counseling, and treatment. In some other places, the ART landscape looks more like a desert, with a few oases offering relief. But in both the desert and the jungle, finding one's way into the health system or to a specific program is much more likely to be direct and smooth if a connected person, who knows the road, can walk the way with you—or if you know someone at the destination.

In other words, there is a difference between availability and accessibility. Although ART may be available in principle at a treatment site in your area, it may become accessible only when you are able to get in touch and talk to the staff. That step must seem feasible to you personally, which often means being helped and reassured by someone you trust.

The First Link to the Test

A crucial step on the way to an ART program is an HIV test. Testing was a necessary prerequisite in the search for treatment, and nearly all of our interlocutors spontaneously described how they came to know for sure that they were HIV-positive. For the members of the first generation, "voluntary counseling and testing" was the common pattern—that is, they had to take the initiative and present themselves at a testing site where they received counseling before and after getting their test results. Only a few of our interlocutors underwent "routine counseling and testing," the policy adopted later that involved testing at the initiative of health workers as part of the process of diagnosis and treatment (e.g., during a hospital admission). So the first generation had to decide to test.

Like Joyce, people recounted experiences of sicknesses that failed to respond to treatment; partners and children who had passed away from a mysterious disease; and suspicions about the partners of partners. For a few people, worries and speculations about these things moved them, apparently autonomously, to take a test. But most people, like Joyce, mentioned a conversation with someone else as the push toward testing. They named family members, neighbors, colleagues, and friends, who encouraged testing and sometimes suggested a specific venue where a test could be had.

Robinah tested on the advice of her sister Joyce (after Joyce had tested positive herself). Other interlocutors also related that some close relative made the suggestion to test. After her husband died, Harriet was admitted to the hospital twice and her co-wife fell ill. "This is when my brothers decided to take me for testing," she recounted. "They said, 'Let's take you for the test, because you are sickly all the time from malaria, and yet you have been such a hardworking woman.'" Norah had just lost a small child when she started coughing terribly. "I had so much pain that I was feeling like the chest was split and I was spitting terrible sputum and had also started thinning," she said. "At this time, I was living in Kaberamaido with my husband, but my mother became so concerned and bothered about my situation. She called me and said, 'My daughter, you come and I check you, you could be having a problem.' So my mother organized and sent me to Soroti hospital for an HIV test, where I was found to be positive." The way Harriet and Nora spoke about the decision to test showed that they did not claim responsibility for making the decision alone; they attributed it to others. They only consented to what was suggested or decided by their relatives.

The place of health workers in these kinship networks was prominent. As Steven Feierman and John Janzen write: "The person who combines the two roles of healer and therapy manager is especially influential. Most of the people who know the patient's personal circumstances do not have technical medical competence. Most of the people with technical competence do not know the patient. The healer-relative holds technical as well as personal knowledge and therefore plays an especially important role." Sometimes a close relative knew a health worker. For Helen, it was her brothers who had a contact. They did not accept the suggestion of another family member that she be tested at their district hospital in western Uganda. Instead, she said, "They took me to our friend in Mulago Hospital [in Kampala], to a doctor who is a friend to my young brother, and he advised us to go to Kadic Hospital to be tested."

In several cases, a close relative was a health worker. Ivan's wife was admitted to a hospital where her stepmother was a nurse. He said that she had advised his wife to take an HIV test. On the surface, this looks like an example of a health worker initiating testing, but in Ivan's telling, his wife was following the advice of a woman she calls mama.

The advice of health workers as friends also figured in the accounts of deciding to test. Hope was depressed and worried after her partner died:

I had a friend who is a nurse. She saw me losing weight because I was not eating, and I was thinking too much—of course, worried. I became very weak, and if I did not have that nurse working in Mulago, I think I would have died. She called me to her home and asked what the problem was until I told her the truth. She explained to me that I could not die. I told her that I may die today or tomorrow and asked her to look after my children. She comforted me and advised me to go for HIV testing."

The soldier Saddam (case II) said he tested on the advice of a good friend who was a medical assistant in the Army. In these examples, health workers promoted testing not as professionals in a health facility but as knowledgeable members of networks, what Janzen called therapy managing groups.

Allies in Seeking Treatment

Once they had tested HIV-positive, our interlocutors had to find their way into a treatment program. Sometimes years passed between getting a positive test result and actually joining a program. Most people did not take their first test with the program they eventually joined. And, of course, most members of the first generation tested before free treatment was widely available. Jackie (case VI) tested at the AIDS Information Centre in Kampala but did not take any further steps for some time. "I kept quiet after the first test because by then the medicines were very expensive and only affordable by the rich," she said. "I just got firm and didn't tell anyone because I knew I could not afford to buy drugs." But when Jackie did in time find her way to an ART program, she did so, like most, through the mediation of another person.

The details of connecting to a treatment program resembled the stories about being encouraged to take a test. Supportive friends and family members knew about, or knew someone working in, a place whereART was provided. A connection with a health worker was also common in this step. William, a construction worker from Luweero, contacted his brother, who owned a school in Kampala and who advised him to test at the Joint Clinical Research Centre (JCRC). When he was found to be HIV-positive with a low CD4 count, he was asked whether he was prepared to start treatment there on a fee basis. "We knew we could not afford to buy the drugs," he said. "I told them, 'Let me consult my brother.' Then we went to Dr. Jack at Mulago [National Referral Hospital], who took us to IDI [the Infectious Diseases Institute]. He is a very good friend of my brother. He has children in my brother's school." It was through this connection that William accessed free treatment at the Infectious Diseases Institute.

Ivan, whose wife had tested at the advice of her stepmother the nurse, talked about the day his wife was discharged and the couple returned home. "I have a friend who works with HBAC. He is a neighbor here," Ivan said. "When he saw us coming from the hospital, he asked me privately whether we had heard about HIV/AIDS. It seems he had suspected. I told him everything, being my friend, and this helped us because HBAC was recruiting people to include in their program. He took my wife's name and recruited her. She started on ARVs."

The youngest interlocutor in our study, James, who was twenty-five, was receiving industrial training in connection with his studies when his leg became swollen and painful. The human resource manager at his workplace referred him to the private clinic with which his employer had a health care contract. There the doctor tested him for HIV. But James's workplace did not cover ART costs, and he was there only temporarily in any case. He finally got connected to a treatment program through a former classmate, Henry, who was a lab tech student at Makerere University. "I visited him," James said. "Henry's friend saw me and realized that my health was not good. They discussed about connecting me to the IDI, and that is how I joined [that program]."

There are many more examples, but these underline the point that most people talked about getting into a program as a matter of connections. We think that in at least some of these cases, health workers were simply doing their jobs. Ivan's neighbor was supposed to recruit participants for research on home-based health care. But Ivan spoke of it as a personal favor. Maybe Ivan did not actually know about the HBACprogram; maybe he had heard about it but did not know how to get enrolled. Or perhaps he thought that the link through a neighbor would ensure better attention to his wife. In any case, like many others, he spoke of her joining the program as mediated by someone he knew.

Confidence in Bureaucracy

The great majority of our interlocutors mentioned connections when they talked about how they tested and joined a treatment program. But a few were personally familiar with health institutions or were insiders in organizational bureaucracies that seemed to work, and they spoke as if they had made direct contact withHIV/AIDS facilities and had confidence that the programs would serve them. Matayo was a lab technician in an HIV testing unit. When he fell ill, he went to a private hospital covered by his employer, where a doctor recommended that he test. When he was found to be HIV-positive and in need of treatment, he started buying medicine at JCRC. In time, the organization for which Matayo worked contracted with theJCRC to cover the cost of treating its staff, so Matayo no longer had to pay for his medicine there. Then there was Julia, a nurse who developed tuberculosis after her husband died. In 1998, when HIV testing became available in the hospital where she worked in Pallisa, she tested. No treatment was available, and she tried to concentrate on working and supporting her seven children. Three years later, a friend, who had also tested positive, told her about the JCRC in Mengo/Kampala. "Let's try Mengo—it's about buying drugs," the friend said. Julia claimed they were well received there, although they apparently had no connections.

(Continues...)

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Table of Contents

Polygraphy vii

Introduction. The First Generation 1

Case I. Robinah and Joyce: The Connecting Sisters 25

1. Connections 34

Case II. Saddam: Treatment Programs 47

2. Clientship 56

Case III. Suzan: The Necessity of Travel 71

3. Mobility 80

Case IV. MamaGirl & MamaBoy: Family Matters 95

4. Families 104

Case V. Alice: Keeping a Good Man 119

5. Partners 128

Case VI. Jackie: Children without Grandparents 143

6. Children 152

Case VII. John: Working Contingencies 167

7. Work 176

Case VIII. Hassan: Soft Food and Town Life 191

8. Food 200

Case IX. Jolly: Appearances and Numbers 215

9. Bodies 223

Case X. Rachel: Buckets of Medicine 237

10. Medicine 245

Case XI. Dominic: A Multitude of Adversities 259

11. Life 268

Acknowledgments 285

Bibliography 287

Contributors 299

Index 301