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Global AIDS Medicines in East African Health InstitutionsAnita Hardona; Hansjörg Dilgerb

a Anthropology of Care and Health, University of Amsterdam, Amsterdam, The Netherlands b FreieUniversität Berlin, Institute of Social and Cultural Anthropology, Berlin, Germany

Online publication date: 11 March 2011

To cite this Article Hardon, Anita and Dilger, Hansjörg(2011) 'Global AIDS Medicines in East African Health Institutions',Medical Anthropology, 30: 2, 136 — 157To link to this Article: DOI: 10.1080/01459740.2011.552458URL: http://dx.doi.org/10.1080/01459740.2011.552458

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INTRODUCTION

Global AIDS Medicines in East AfricanHealth Institutions

Anita Hardon and Hansjorg Dilger

In this introduction to the special issue, we follow the journey of global AIDSmedicines into diverse health facilities in East Africa, which for decades havebeen subjected to neoliberal reform processes and increasing fragmentation.The introduction explores the multifaceted and multidirectional connectionsbetween global processes and their manifold articulations and experiences‘‘on the ground.’’ We sketch how individuals, families, and communitiesdealt with HIV=AIDS-related illness and death before the scale-up of life-prolonging antiretroviral therapy programs, and describe the global policyprocesses that led to an influx of large volumes of donor support forAIDS treatment programs. We argue that global AIDS medicines havecaused dramatic changes in institutional set-ups and care practices. The phar-maceutical medicines travel to the local health care settings with ‘‘baggage’’:protocols and guidelines on who to treat and why, with strict guidelines onhow to ensure adherence; and new notions of responsible and therapeutic citi-zens. This special issue elucidates the frictions, negotiations, and ambiguities

ANITA HARDON, PhD, is Professor in Anthropology of Care and Health at the University of

Amsterdam, Amsterdam, The Netherlands. She conducts comparative studies of health care

arrangements, including research on the global diffusion of contraceptive technologies and

modern pharmaceutical medicines, and on the scaling-up of HIV=AIDS treatment programs.

HANSJORG DILGER, PhD, is Junior Professor for Religious Diversity in Transnational

Contexts, Freie Universitat Berlin, Institute of Social and Cultural Anthropology, Berlin,

Germany. He has conducted extensive field work on kinship, belonging, and the morality of

illness and death in Tanzania.

Correspondence may be directed to Anita Hardon, Amsterdam Institute for Social

Science Research (AISSR), University of Amsterdam, Oudezijds Achterburgwal 185,

1012DK Amsterdam, The Netherlands. E-mail: a.p.hardon@uva.nl

MEDICAL ANTHROPOLOGY, 30(2): 136–157

Copyright # 2011 Taylor & Francis Group, LLC

ISSN: 0145-9740 print=1545-5882 online

DOI: 10.1080/01459740.2011.552458

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that have shaped the incorporation of global AIDS medicines in localhealthcare settings.

Key Words: ART administration; donor support; globalization; health systems; hospital ethnography

In the past decade, anthropologists have become increasingly interested inthe biographies of pharmaceutical medicines (henceforth pharmaceuticals;Whyte, van der Geest, and Hardon 2004; Petryna, Lakoff, and Kleinman2006). Studying medicines to know how the globalizing world functionsand understanding the efficacy of medicines in the wider context of cultureand society is an obvious area of interest (van der Geest 2006). AIDS med-icines in particular have been attractive global pharmaceuticals for anthro-pologists not only because of the dramatic politics of access that haveshaped their history in a global perspective but perhaps also because ofthe widespread activism surrounding them. Epstein (1996), for example,has described how early in the development of these drugs, AIDS activistswere strongly involved in establishing access to and shaping the face ofthe emerging AIDS treatment and care regimes in North America. By argu-ing that short-term increases in CD4 counts could serve as surrogate mar-kers for decreased mortality, they reduced the amount of time needed forclinical trials and thus accelerated the roll-out of AIDS medicines.

Anthropologists have followed the biographies of AIDS medicines totheir introduction in diverse AIDS care arrangements in the global South.Biehl (2004) describes how Brazil was the first non-Western country toadopt legal measures to provide people living with HIV the right to accesslife-prolonging antiretroviral (ARV) drugs. In ‘‘Will to Live’’ (2007), hedescribes the difficulties that homeless, unemployed, and other less well-offcitizens face in accessing the drugs. In a seminal article on early AIDS treat-ment activism in Burkina Faso, Nguyen (2005) observed the introduction ofAIDS medicines in West Africa, and introduced the concept of ‘‘therapeuticcitizenship’’ to describe how people who share a biological state of beingHIV-positive make claims for access to life-saving AIDS medicines. Finally,Robins (2004) described the pivotal role played by the South AfricanTreatment Access Campaign in their movement for increasing access toantiretroviral therapy (ART).

This special issue follows the journey of AIDS medicines into diversesettings in East Africa (Tanzania, Kenya, and Uganda), where HIV hasbeen present for almost three decades. AIDS medicines came late to theregion, although accessibility has increased dramatically over the past fiveyears due to support from (among others) the Global Fund for AIDS,Tuberculosis, and Malaria, and the US President’s Emergency Plan for

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AIDS Relief (PEPFAR). Today, the ARV treatment programs in East Africahave become exemplary for national and local articulations of one of thelargest (if not the largest) biomedical interventions in public health in thehistory of the African continent. Enormous amounts of financial resourceshave been invested into providing medicines, training health personnel, andexpanding technological infrastructure. ART has also become a social andcultural intervention, transforming the individual biographies and life per-spectives of people living with HIV=AIDS. ART has come with a wholepackage of sociocultural requirements impacting on patients’ interactionswithhealth staff, their families, and their social environments. It has also trans-formed wider concepts of life and death, ethics and care, self and the body.

Before AIDS medicines became available in East African health facilities,doctors and nurses often simply sent people suffering from AIDS home.Other families struggled to pay the fees for hospitalization and the treatmentof recurrent opportunistic infections (Katapa 2004). People rarely went tovoluntary HIV counseling and testing facilities for fear of social death.HIV tests were often carried out in hospitals without the explicit consentof patients, thus leaving decisions about care and treatment to family mem-bers who often only learned about their relative’s diagnosis through infor-mal conversations with health staff (and not in post-test counseling asrequired by various guidelines; see, for example, Harrington 1998). In theface of biomedicine’s ‘‘failure’’ to provide effective treatment, people withHIV and their families often looked for healing elsewhere, resorting to thepromises and practices of ‘‘traditional’’ and Islamic healing, and the pro-mises of evangelical and charismatic churches (Whyte 1997; Dilger 2007).1

From the early to mid-1980s, the health care systems in East Africa facedsevere problems. They had crumbled under the impact of national and inter-national political and economic crises in the 1970s, and, in Tanzania andUganda, the effects of war and civil war, which finally led to the introductionof structural adjustment policies and the reformation of health care systemsthrough increased privatization and a growing dependence on outside fund-ing. Confounding these difficulties, health systems faced a growing burdenof HIV=AIDS-related disease, affecting both patients and health care person-nel. With the expanding epidemic, in some hospitals, as many as 40 to 50 per-cent of adult hospital bed days were used to care for HIV=AIDS patients.Moreover, for every terminally ill patient in hospital, there were probably10 to 20 HIV-infected people living in the community and suffering symptomsof early HIV-related ailments, including frequent opportunistic infections. Inthe early stages of the disease, they turned to first-line health services for help,increasing demands for already limited medicines (Foster 1994).

In the following, we sketch how individuals, families, and communities inEast Africa dealt with HIV=AIDS-related illness before the scale-up of

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life-prolonging ART programs. We examine how their experiences andpractices were framed by changing public health care systems, and fromthe early 1980s, the increasing dependence of governments on outsidefunding (Iliffe 1998). In the context of growing morbidity and mortality,HIV=AIDS became a field in which new institutional arrangements andspecific understandings of ethics, professionalism, human rights, and indi-vidual responsibility were promoted. The response to the epidemic thusbecame intertwined with—and symbolic for—the larger reconfigurationsof health systems in East Africa in the context of globalization. Peoplehad to reorganize their lives in the face of shifting state responsibilities,while AIDS interventions aimed to invade the most intimate spheres of theirlives. We then show how this situation has been exacerbated by the intro-duction of ARVs increasingly available in East Africa from the mid 2000s.

With its focus on the ARV mass treatment programs’ effects on insti-tutional practices and experiences, this special issue makes an important con-tribution to shed light on the complex social and cultural processesimplicated in the provision of ARVs in Eastern Africa. Long-term ethnogra-phy provides detailed insight into the reconfigurations of health care systemsin local settings. These have become subjected to neoliberal reform processesand increasing fragmentation with regard to shifting institutional setups,diverse funding mechanisms, and professional and lay understandings ofhealth care. The special issue also makes an important contribution tomulti-scalar research approaches in the study of health and globalization thattake seriously the multifaceted and multidirectional connections betweenglobal processes and their manifold articulations and experiences ‘‘on theground.’’ Finally, by focusing on institutional, individual, and health profes-sionals’ engagements with globalizing flows of ideas, medicines, and financialresources, this issue contributes to the wider field of ‘‘hospital ethnography’’(van der Geest and Finkler 2004) and the study of health organizations.

LIVING WITH HIV=AIDS PRE-ART

Until funds became available for the provision of ART in East Africa,2

families carried the main burden of AIDS care. The magnitude of illnessesand deaths caused by HIV=AIDS overwhelmed both nuclear and extendedfamily systems. Ntozi and Zirimenya (1999) observed a dramatic change inhousehold composition in Uganda, wherein the high number of deaths of15 to 64 year olds created an increase in the dependent population youngerthan 15 and older than 64 years. The burden of caring for sick and dyingrelatives was largely carried by women who—apart from being responsiblefor farming and household activities—tended to the sick and dying by

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preparing food and medicine, bathing them, carrying them to the toilet, andwashing soiled clothes and sheets (Thomas 2006:3178). In some cases, thereturn from towns of family members sick with HIV=AIDS created tensionsand conflict within nuclear and extended families, when claims about careand belonging were negotiated against the alleged failure of these relativesto fulfill kinship based obligations of reciprocity at the time when they werestill healthy (Dilger 2008).

Within families and communities, HIV=AIDS became framed in stronglysocial and moral terms. While public health messages about the biomedicalnature of HIV=AIDS were widely acknowledged in Eastern Africa evenbefore ART, individual and collective views of the epidemic, and the prac-tices and experiences surrounding HIV=AIDS related illnesses and deaths,were strongly shaped by sociomoral perceptions. These connected ways ofdealing with the disease with broader questions of social and cultural conti-nuity and belonging, and the ongoing struggle for order and certainty in anera of crisis and suffering (cf. Whyte 1997; Dilger 2005). In many instances,individual cases of illness were ascribed to witchcraft (Yamba 1997;Ashforth 2002) or the violation of a taboo (Mogensen 1995; Wolf 2001;Dilger 2008; Prince and Geissler 2010). Thus experiences of pain and suffer-ing were related to the alleged misbehavior of infected people or to relatedor unrelated others held responsible for bringing the affliction upon a familyor individual. These various discourses represented a source of hope forpatients and their families as they were often connected to claims of healingand cure in the face of a disease claimed by public health campaigns to beinevitably lethal (Whyte 1997; Good 1989).

Another challenge for nuclear and extended families was the ongoing andnumerous deaths of family members, and how and where to conduct burials.Lugalla and colleagues described the immense burden of mortality fromHIV=AIDS among the Bahaya in the Kagera region of Tanzania:

The Bahaya do not have a public cemetery for burying their loved ones. Theybury their dead on their immediate farms and around their houses. The pres-ence of graves in front of the doorsteps of their homes presents a powerfulmessage and warning about AIDS. (2004:195l)

Among the Luo in North Tanzania, the growing number of AIDS-relateddeaths among young and middle-aged men and women challenged ideasabout the reproductive cycle and the flow of life in general. In this context,burials became3 important—and contested—occasions in which the deceasedrelative’s position in a specific set of family relations was negotiated and, ifpossible, confirmed. Where no agreement on the proper burial could beachieved, further suffering was assumed to arise from malcontent spirits

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and incomplete mourning rituals (Dilger 2008). As in Uganda (Whyte 2005),it was young and unmarried (or recently married) women whose position wasusually most contested, as they were understood to occupy a liminal place inpatrilineal kinship based marriage and family orders.

Beyond nuclear and extended families, experiences of living with anddying from HIV=AIDS were framed strongly by the activities of nongovern-mental organizations (NGOs) and churches. ‘‘Living Positively,’’ which hasstrong roots in the AIDS related work of activists and organizations in theUnited States and Northern Europe, was made prominent by the NGOTASO (The AIDS Support Organization) in Uganda in the mid-1980s,and adopted from there by organizations in South Africa, Zimbabwe, andTanzania (Dilger 2001). ‘‘Positive living’’ included not only social andpsychological counseling for a ‘‘life with hope’’ but also material and medi-cal assistance in the form of, for example, income-generating activities,home-based care services, and cost-free treatment of opportunistic infec-tions. Furthermore, while many churches had responded to the epidemicin predominantly negative and often stigmatizing terms, the rapid growthof healing churches in Eastern and Southern Africa became a source ofhope through their claims to heal the sick and provide networks of careand support for the dying (Klaits 1998, 2010; Dilger 2007; Prince, Denis,and van Dijk 2009). Both churches and NGOs were and are frequentedpredominantly by women from lower socioeconomic backgrounds whoare particularly vulnerable to the consequences of HIV=AIDS due to theirstructural position in kinship networks and society at large.

TRANSFORMING HEALTH CARE SYSTEMS

The experiences and practices of people with HIV=AIDS and their familiesand communities, as described, took shape in relation to rapidly transform-ing health care systems that distributed services, obligations, and responsi-bilities of care in new ways. By the early 1990s, as the effects of theHIV=AIDS epidemic in East and Southern Africa became apparent,international donors and agencies had adopted health care reform as anew paradigm guiding global health aid. Prior to this, the overriding para-digm guiding development assistance was primary health care, whichemphasized essential technologies, equity, and community participation.

The development of health systems in the postcolonial period differedsignificantly between Tanzania, Kenya, and Uganda (Iliffe 1998). These dif-ferences were due partly to colonial politics, which, for example, left Uganda’shealth care system better prepared for independence than those of its neigh-boring countries, especially with regard to the comparatively high percentage

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of Africans among the country’s health professionals. There were also strongdifferences in the priorities that post-colonial governments had in providinghealth services, conducting medical research, and involving private practi-tioners in health services. The Ugandan health system faced severe challenges,especially during Idi Amin’s regime (1971–1979) and after his banishment ofIndian doctors; it was re-built only under Obote’s second government withthe support of international donors (1980–1986), and built up particularlywith the growing reforms under President Museveni from 1986 onward. Bycomparison, in Kenya rapid population growth and relative wealth from1963 to 1973 led to the expansion of the health system, the establishment ofself-help structures on the community level, and the foundation of medicalresearch institutions. From the mid-1970s, however, hospitals becameincreasingly overburdened, and corruption and a lack of resources led to aseries of strikes and the migration of doctors to the private sector. Finally,in Tanzania emphasis was placed on extending rural health services, trainingrural medical aids, health prevention in urban areas, and a combination of‘‘modern’’ and ‘‘traditional’’ medicine in line with the Chinese model andTanzania’s ideology of self-reliance (Iliffe 1998). Despite some achievementsof these health care systems, however, all three countries faced severe difficult-ies in meeting the growing health demands of their populations and, againstthe background of growing political and economic crises, from the 1980sentered negotiations over structural adjustment programs and internationalloans with the World Bank and the International Monetary Fund.

Health reforms introduced in the early to mid 1990s reflect a changingperspective among donors of health as a public good. No longer was itself-evident that health services, which benefited ‘‘all’’ were contributingto public good. Individuals and families increasingly were supposed to takeresponsibility and pay for treating their health problems, including thoserelated to HIV=AIDS. In East Africa, donors encouraged the national statesto decentralize health sector management to districts, and hospitals wereexpected to generate their own funds through introducing user fees andsetting up public-private partnerships (see Sullivan, this issue).

In 1997, a policy report on HIV=AIDS, published by the World Bank(1997) with the European Commission and the joint United NationsProgram on HIV=AIDS (UNAIDS), applied economic considerations tojustify a series of priority actions in the field of AIDS in Africa. The reportargued that governments had a mandate to endorse and subsidize ‘‘risk-reducing preventive interventions,’’ because by doing so they could preventthe enormous expenditures involved in caring for AIDS patients. Anotherargument for government intervention was that unsafe sexual practiceshad consequences not only for those engaging in unsafe sex but also for theirother partners, ultimately affecting a large population. Providing funds for

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preventive interventions met what World Bank economists defined as apublic good: something that benefits society but which private entrepreneurshave insufficient incentive to produce on their own. Life-prolonging ARTwas not, however, defined as a public good at the time.

The World Bank report classified countries into those with a nascentepidemic, where HIV infection was still rare, and those with concentratedand generalized epidemics. In the latter countries (including those in EastAfrica), preventing HIV infection among those most likely to contractand spread the virus was considered necessary, but in addition these coun-tries would need to go beyond such targeted approaches and reach out tothe general population. At the time, countries in East Africa were slowlyacknowledging the epidemic, with national AIDS control programsadvocating the so-called ABC (Abstinence, Be faithful, or use Condoms)programs to reduce sexual risk, and churches and Islamic organizationsresisting the ‘‘C’’ in most countries. Uganda’s AIDS response proved parti-cularly successful (Kinsman 2010). The country had developed HIV preven-tion campaigns and care programs from the mid-1980s when it was stillaffected by civil disruption following Idi Amin’s war with neighboringTanzania. After the change in government in 1986, the AIDS responsewas characterized by strong government support and the involvement of awide range of actors (for example, various government sectors, NGOs,the media, religious organizations, communities, and grassroots organiza-tions). By 2000, the seroprevalence among young, pregnant women (aged15–19) had fallen from 30 percent in Kampala in 1991 to slightly below10 percent in most of the country’s surveillance sites (Green et al. 2002:3);the overall HIV infection rate in the adult population (aged 15–49) hadfallen to five percent by the end of 2001 (UNAIDS 2002).

While the three countries subscribed to the international priorities ofprevention and care, the absence of treatment possibilities was a growingconcern. Interviews with donor representatives on access to HIV=AIDSmedicines in 1999 pointed to a significant lack of donor support for pro-grams aimed at providing care to ill people (Hardon 2005). The followingquote from a representative of a bilateral donor illustrates the prevailingpolicy paradigm and its perception by different stakeholders at the time:

Imagine what will happen if we do make HIV related medicines available? Wewill keep them alive longer. They will have sex and continue to spread the virus.

Somewhat ironically, in the same year members of an HIV=AIDS sup-port group in Dar es Salaam, Tanzania, barely referred to (lack of) accessto ARVs in their group discussions. They expressed strong satisfactionwith the policies and programs of international donors and NGOs, while

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simultaneously blaming national governmental authorities for their allegedfailure to take care of their HIV positive citizens:

This question of AIDS is still far removed from [the government], they haven’thelped us with anything. If it wasn’t for these NGOs—if it was only for thegovernment—we would be dying like chicken (Kiswahili: tungekufa kamakuku). None of these government people or ministers has ever come here [toask about our problems]. (Zephania, male 37 years old, interviewed in 1999;quoted in Dilger 2005:195)

Dilemmas concerning ARV provision and access to health services in aglobalizing world led to growing discomfort among scholars and healthorganizations on the situation of triage on a global scale. As Barnett andWhiteside put it at the time:

With the development of anti-retroviral therapies (ARTs), the epidemicdefines who is saved . . . and who is left to die from the disease and its impacts.In its distribution across the continents and in relation to access to drugs thatcan save lives, it is a global epidemic that defines the excluded of the world–thewretched of the earth. Above all, HIV=AIDS defines those who can purchasewell-being and those who cannot. (2002:7–8)

PARADIGM SHIFT: FROM PREVENTION TO TREATMENT

Less than a year after the two ethnographic studies mentioned, theHIV=AIDS epidemic in Africa was the focus of discussion in several majorinternational forums, including the United Nations (UN) Security Council.High-level policy makers compared the effects of AIDS in Africa to those ofwar, with emphatic concerns about the consequences of the epidemic interms of political stability. At the January 2000 Security Council Meeting,UN Secretary General Kofi Annan said:

By overwhelming the continent’s health and social services, by creatingmillions of orphans, and by decimating health workers and teachers, AIDS iscausing social and economic crises which in turn threaten political stability. . . .In already unstable societies, this cocktail of disasters is a sure recipe for moreconflict. (UNAIDS 2000)

At the same meeting, Peter Piot, the Executive Director of UNAIDS, said:

Visibly, the epidemic is eroding the social fabric of communities . . . in itsdemographic, social and economic impact, the epidemic has become moredevastating than war, in a continent where war and conflict appear to beendemic. (UNAIDS 2000)

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Appearing before the Security Council, James D. Wolfensohn, President ofthe World Bank, called for a ‘‘War on AIDS.’’ Stating that AIDS wascontributing to instability in societies and creating fertile ground for bothinternal and cross-border conflicts, he emphasized the need for moreinternational support for prevention, suggesting that every war needs awar chest (UNAIDS 2000).

These statements reflect a growing sense of urgency at the same time aswidespread advocacy for more equitable access to AIDS medicines grew.AIDS activists in the North and South were campaigning vigorously forlower prices for AIDS medicines and for the adoption of global agreementsto exclude AIDS medicines from patent protection in countries where AIDSwas an emergency health problem. Early in 2000, CIPLA—a generic drug-producing company in India—offered to provide Medicins Sans Frontieres(MSF) AIDS medicines at 10 percent of the price of similar patentedmedicines. MSF established pilot ARV projects in Uganda and South Africa,among other places. Early results indicated that adherence to ARV regimeswas possible (Kasper et al. 2003), evidence used by global AIDS advocates topressure global and national level policy makers to increase ARV availabilityon three main grounds (International Treatment Access Coalition 2002):(1) Access to ARVs is a human right; (2) Greater access may increase HIVtesting, helping to prevent HIV transmission (Blower and Farmer 2003);and (3) Greater access to treatment may diminish the stigma and discrimi-nation associated with HIV=AIDS.

Meanwhile, powerful political players had moved into the field to securefunding for the drugs. In 2003, US President Bush promised 15 billion USDto heavily affected African countries for treatment and health care interven-tions that promoted abstinence and faithfulness (and not condoms, at leastnot for the ‘‘general population’’); and the multi-billion dollar grant-awarding Global Fund for AIDS, Tuberculosis, and Malaria was estab-lished. By October 2003, 4.7 billion USD of predominantly public moneyhad been pledged to the Global Fund, with the United States providingthe largest government contribution (500 million USD). Events surroundingAIDS control in East Africa were now unfolding within an entirely newparadigm. The key considerations were not cost-effectiveness, but equityand access. The World Health Organization (WHO) adopted goals forproviding ARVs in resource-poor settings, aiming to provide ART to threemillion people by 2005 (‘‘3 by 5’’; WHO 2005).

Goals such as 3 by 5 have important political functions. Ideologicallythey provide a shared aim around which different stakeholders can rally,while practically they help mobilize support from various global actors,including UN agencies, donors, private foundations, and industry.They help mobilize collective energies behind collective goals, and help

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sustain the hope that the aims can be achieved. They project an image ofpossible and intrinsically beneficial public health programs (Hardon andBlume 2005).

Even so, some researchers and policy makers remained concerned aboutthe possible risks of increased availability of ARVs in resource poor settings.They argued that the cost-effectiveness of ARV provision may be lower thanprevention programs (Creese et al. 2002), and that underdeveloped healthsystems may not provide the quality of care needed for effective ARVutilization (Brugha 2003). Poor adherence to treatment would be theconsequence of the failing quality of care, increasing drug resistance andrendering future treatment ineffective.

Multi-stranded and multi-layered treatment activism fueled the commit-ments and programs to establish access to AIDS medicines in Sub-SaharanAfrica and other resource poor regions, and attacked skeptical researchers.The Treatment Action Campaign in South Africa was the most vocalAfrican voice demanding treatment access; its leader, Zachie Achmat,mobilized global media coverage by refusing treatment while medicines werenot available in his country (Robins 2004). Organizations like TASO inUganda established new social institutions (such as expert clients and supportgroups) to ensure the appropriate use of the AIDS medicines that were slowlybecoming available in Africa (Grebe 2009). The successes of the movementwere impressive: unprecedented resources for medicines for the poor.

However, treatment activism remained limited in scope and effect. Inmuch of Eastern and Southern Africa, HIV=AIDS groups—the basis fortreatment activism in countries like South Africa and Burkina Faso—consisted of HIV-positive women and, to a lesser extent, men from lowersocial and educational backgrounds. Their motives to join these groups wereoften not political agitation or wide-scale political and social change. Manywere concerned with establishing access to the material and medical servicesof NGOs (Bujra and Mokake 2000; Dilger 2001). The scope of AIDSactivism in East Africa was also often hampered by transnational fundingarrangements which—once funding was withdrawn or shifted to newpriorities and groups—led to the decline of existing and the emergence ofnew social forms. This contrasted with settings where AIDS activism wasestablished on a more continuous basis and promoted by better establishedmiddle class individuals with access to relevant resources and networks.4

SCALING-UP ART

From the mid-2000s, the ARV landscape in Africa changed dramatically.Until around 2003, only the lucky few could access ARVs, as described

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by Nguyen (2005) in Ouagadougou, Burkina Faso. With limited reserves ofthe costly drugs, health professionals, policymakers, and families wereforced to decide who was deserving of treatment (for Uganda, see Whyteet al. 2006). With the aim of meeting the 3 by 5 targets set by the WHO,and with access to available global resources, governments in East Africawere among the first African countries to make ambitious plans to scale-uptreatment. But what happened when governments and donors had commit-ted themselves to such rapid and ambitious scale-up of treatment access?The WHO 3 by 5 aimed for the target of 110,000 people on ARV treatment(based on 50 percent of the estimated need) in Kenya, 130,000 for Tanzania,and 55,000 for Uganda (WHO 2006). The Ministries of Health in thesecountries rapidly set out to accredit AIDS care centers, enabling them toprovide ART to populations in need.

Funds to scale-up ART came from the Global Fund and from PEPFAR,with the former providing funds to African state institutions and the latterchanneling funds through various non-state ‘‘prime’’ partners, many basedin the United States. In its 2005 plan (PEPFAR 2005), PEPFAR set itself anaim of treating two million people with ART by 2008 (for Uganda, 60,000;Tanzania, 150,000; Kenya, 250,000). Unprecedented in African healthprograms, targets were met: In 2009, PEPFAR reported that in Kenya 92percent of those targeted was reached, in Uganda 241 percent, and forTanzania 96 percent (PEPFAR 2009). In the meantime, the WHO hadshifted to reporting estimated coverage (defined as the percentage of peoplein need with access to ART). As of December 2007, estimated coverage forKenya was 38 percent, for Tanzania 31 percent, and for Uganda 46 percent(WHO 2008). The ART programs had become islands of abundance inpublic health facilities hit hard by health reforms. The programs offered front-line health workers magic bullets to do what they were trained: treat people.AIDS medicines provided the promise of life to populations in East Africawho had come to equate HIV infection with death, both social and physical.

In providing ART in East Africa, donors demanded rigorous monitoringsystems to account for their investments, which meant that separate flows offunds had to be administered separately. This led to complaints by healthworkers of poor coordination (Hardon and Daniels 2006). At the level ofindividual patients, adherence monitoring was emphasized; patients musttake the drugs in accordance with strict time and dosage guidelines in orderto prevent drug resistance, particularly important given the lack of funds forsecond-line treatment (required when the cheap drugs provided by CIPLAdo not work). Consequently, most ART programs require monthly clinicvisits and pill counts to monitor adherence (Hardon et al. 2007).

Before 2003, in line with the global decrease in prices for ARVs, AIDSmedications had become available at a fee in various health settings in

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Uganda (for example, research-funded treatment centers and privatepractices), reaching primarily relatively wealthy patients in urban centersand requiring families to make difficult choices about who to support andfor what reason (Whyte et al. 2006). Today—in line with the human rightslogic of universal access (and paid for by massive global funds)—ARVs aregiven away free in most hospitals, clinics, and NGOs in Eastern Africa,although they still come at a cost: patients who cannot pay for private ser-vices have to attend collective adherence classes where one’s HIV-positivestatus cannot be kept secret (see Mattes, this issue). In private institutions,on the other hand, patients have shorter waiting times, confidentiality isoften higher, and health staff is often less invasive of the lifestyles of theirgenerally more wealthy clients.

Few studies have described the everyday experiences and practices ofhealth professionals, people living with HIV=AIDS, and their families andcommunities, with regard to the rapid scale-up of ART in Africa (Whyteet al. 2006; Mogensen 2010). Even fewer anthropological studies haveaddressed how introduction of ART, and the funding structures for this,have impacted on health care arrangements in public and private hospitalsand clinics, on existing HIV prevention programs, and campaigns (seeWhyte, Whyte, and Kyaddondo 2010 as an exception). In this special issue,we emphasize how health care institutions in East Africa mediate AIDStreatments, offering a comparative perspective from contemporary studiesin hospitals and health centers in East Africa and reflecting on conceptsand theories used to understand how individual and collective behaviorand practices are shaped in relation to ART.

We focus in particular on three topics:

1. The impact of transnational funding structures on institutional arrange-ments in specific hospital and clinical settings in East Africa;

2. The way in which ART acquires a ‘‘social dynamic’’ and becomesembedded in social relations, ethical-professional setups, and political-economic dynamics in health institutions; and

3. The impact of ART treatment on public perceptions and attitudes sur-rounding HIV=AIDS and prevention campaigns (especially with regardto voluntary HIV counseling and testing, and disclosure of HIV status).

The three case studies included in this special issue are based on long-term ethnographic fieldwork in East Africa and contribute to recent debatesin the medical anthropology of globalization and health, biopolitics, andtherapeutic citizenship. They demonstrate how global AIDS medicines,and preceding arrangements of biomedical practice and health governance,have caused dramatic changes in care practices in hospitals and health

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centers. The pharmaceuticals travel to these local health care settings with‘‘baggage’’: protocols and guidelines on how to manage the supply ofmedicines, and who to treat and why; resources for training and additionalbenefits for salaried health workers; diagnostic instruments and a policy toincrease uptake of HIV testing through provider initiated testing andcounseling; strict guidelines on how to ensure adherence (to prevent drugresistance from emerging); and new notions of responsible and therapeuticcitizens who ‘‘live positively,’’ disclose their status, and refrain from drink-ing alcohol or taking traditional medicines. It is attractive to describe theseprocesses as biopolitics, or following Biehl (2007), the ‘‘pharmaceuticaliza-tion of public health at the edge of neo-liberal society.’’ The studies includedhere elucidate the frictions and ambiguities that occur when AIDS medicinesbecome available in settings that have over the past decades focused on HIVprevention, where human resources and equipment are lacking, and a largeproportion of the population live in poverty, associating HIV=AIDS with(physical as well as social) death.

The health centers and hospitals where the research was conducted are notbiomedical islands, but rather—in the tradition of hospital ethnography—domains where specific cultural values and beliefs come into view (van derGeest and Finkler 2004; Long, Hunter, and van der Geest 2008). As anthro-pologists we emphasize not the biomedical norms governing ART programsbut the sociocultural and economic ambiguities that occur in practice. Weshow how patients negotiate ongoing challenges to adherence in everyday life(as called for by Nguyen 2005). We describe how health workers uphold theethics of voluntary consent when good care demands that HIV tests are done,and show that in accessing HIV tests and treatments, friendship, kinship, andsocially and historically embedded ideas and practices of healing play muchlarger roles in East African settings than therapeutic and=or biologicalcitizenship (see also Meinert, Mogensen and Twebaze 2009). We show howat the local level, the motives of expert patients and health care workersto join the newly formed HIV=AIDS institutions, are inspired not by thepolitical aims of social change and equity, but a need to establish access tothe material and medical services provided by NGOs and to deal with thedifficulties of simply getting by on an everyday basis. Finally, we presentthe inequities that emerge in programs that aim to ensure universal accessto ART (see Whyte et al. 2004).

The articles demonstrate manifold effects of providing ARVs on insti-tutional practices and experiences, and demand an ethnographic analysisin order to highlight the ambivalent and complex nature of the processesset in motion by ART. So far, it is difficult to discern specific national trendsin the institutionalization of ARVs in Tanzania, Uganda, and Kenya. Whilethe histories of these countries’ health care systems display significant

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differences (as previously mentioned), some differences are increasinglyblurred by the overarching trends and effects that shape the implementationof treatment programs across national boundaries.

Complex and constantly changing landscapes of treatment provision areembedded in wider health systems, characterized by the overall limitedaccess to comprehensive care in the public health sector (and the concurrentabsence of staff, essential drugs, and medical equipment and technologies ingovernment institutions), and by the over-availability of international fundsfor specific health problems such as HIV=AIDS or TB in some ‘‘enclavesof abundance’’ (Sullivan, this issue). Ideological frameworks (secular andreligious5), and institutional setups (government sponsored clinics andhospitals, NGOs, and other not-for-profit treatment centers, church ownedcenters, private practices, and public-private partnerships) shape the diverseways in which treatments and HIV tests are provided.

The different articulations and effects of these increasingly fragmentedhealth systems produce contradictory effects within and across health institu-tions and provoke individual and collective concerns about opportunities forpersonal enrichment and the transparency of redistributing transnationalresources for the common good (Dilger 2009). They also produce a widerange of individual and collective experiences of and responses to these devel-opments, transforming and newly emerging understandings of ethics, pro-fessionalism, and citizenship, and the limitations of these understandings inactual interactions and practice. Finally, the strong dependence of the EasternAfrican ARV treatment apparatus on global funding makes health fragileand dependent on shifting global priorities and funding arrangements.

Meanwhile, public health researchers and UN agencies have called for asecond tier in treatment scale-up, this time for prevention purposes. Granichand colleagues (2009) presented a mathematical model of universal HIVtesting and early treatment as a strategy for eliminating HIV. The under-lying mechanism of treatment for prevention is that (effective) ARTsuppresses HIV, thus reducing transmission. UNAIDS recently adoptedTreatment 2.0 as a framework to maximize the effect of treatment onprevention efforts to curb the epidemic (UNAIDS 2010). Within this frame-work, a greater emphasis must be placed on identifying, diagnosing, andenrolling into care and treatment those who are hard to reach, particularlyby involving and mobilizing community members. Global policy makers arewell aware that with competing global priorities and significant economicchallenges, more sustainable solutions to HIV prevention, treatment, care,and support are needed. The Global Fund calculated that as of 2008, theglobal community faced a 6 billion USD (or 4.6 billion Euro) shortfall inresources needed to fight the HIV epidemic. The global financial crisis hasincreased budgetary pressure, and major funders of ART struggle to keep

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pace with the scale-up. Scaling-up HIV testing and thus ensuring earlytreatment is now presented as the new magic bullet (WHO 2009). Theoutcomes of the deliberations will have a significant impact on the lives ofhundreds of thousands of people in the region.

THE CONTRIBUTIONS

Dominik Mattes describes the technologies employed by medical profes-sionals in an Eastern Tanzanian government hospital to produce adherentpatients. Adherence is key to achieving the desired positive treatmentoutcome, now and in the future, particularly to prevent the emergence ofresistance to first-line treatments. Mattes shows how HIV-positive patientsare disciplined through educational sessions and adherence panels. Thera-peutic citizenship, Mattes argues, does not fully capture the processes takingplace in these treatment centers, characterized by staff shortages in overbur-dened hospitals. The treatment program is in biopolitical terms an oppress-ive and disempowering program. Not all patients sign up for ART, reluctantto confront the stigma that continues to affect people who are HIV-positiveand instead relying on traditional medicine as their preferred treatment.Frictions between therapeutic goals and individual and collective logics oftreatment are strongly influenced by perceived gender roles, economicconstraints, and the struggle to maintain mostly kinship-based networksof support.

Anita Hardon and colleagues describe how HIV testing facilities inUganda andKenya have changed face in times of ART.Whereas in the begin-ning Voluntary Counseling and Testing (VCT) facilities operated with a pre-ventive logic (people should know their status in order to change their sexualbehavior and reduce transmission of HIV), with the influx of AIDS medi-cines, tests are now done within a framework of care. In the prevention era,there was much concern for stigma and social death related to knowing one’sstatus; hence confidentiality, voluntary consent and comprehensive counsel-ing were stressed. However, the targets set for ART accessibility demandeda scale-up of HIV testing. The WHO has pushed for routine HIV testing inhealth facilities, making it a ‘‘normal’’ diagnostic practice initiated by doctors.The article highlights the ambiguities and fluidity of testing practices, linkedto changes in socio-technical arrangements, such as transformations in testingtechnologies, increasing numbers of facilities offering tests, changes in thekinds of health workers engaged in testing, options for follow-up care, andsecrecy and disclosure practices, and views on a future life with HIV=AIDS.

Noelle Sullivan describes how in Northern Tanzania, health sector reformhas decentralized planning and management and opened up the possibility

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for a government hospital to set up its own public-private partnerships. Evenso, much of the equipment in Sullivan’s field site was old and neglected, andthe main staff complaint was low (government) salaries. In 2002 the hospitalset up a VCT facility, based on which, in 2004—in line with its 3 by 5 commit-ments—the Ministry of Health appointed the hospital as one of its ARTroll-out sites. The services were dubbed CTC (counseling, testing, and care).In 2006 PEPFAR awarded the hospital a grant to scale-up ART provision.Sullivan describes how the subsequent influx of medicines and resourcesfor training affected the hospital. The most competent doctors and nursesgravitated towards CTC, where working conditions were good and poor sal-aries could be augmented with allowances for training. Sullivan argues thatthere are costs to funding these ‘‘enclaves of development’’: the provision ofnon-HIV=AIDS care is eroded, and there is growing potential for tensionsamong hospital staff competing for resources and good working conditions.

Oliver Human’s article on technical expertise and clinical judgment sup-plements the articles of this special issue on East Africa. Human’s research isin South Africa and is concerned with access to ART and the technocraticprotocols for access to treatment. Human illustrates how screening canabuse human rights, depriving people of access to treatment through stereo-types of behavior (and so adherence to medication); in doing so, he high-lights the challenges institutionally and personally in the time of ART.

ACKNOWLEDGMENTS

We thank the dynamic editor of Medical Anthropology, Lenore Manderson,for her editorial suggestions and thoughtful comments on the articles inthis special issue, and the anonymous peer reviewers for their constructivecriticism. We are indebted to Victoria Team who kept the whole processgoing, in between reviews and resubmission, helping us to get the detailsright.

NOTES

1. The availability of ARVs has not led to the abandonment of alternative healing practices.

People continue to look for ‘‘traditional’’ and religious healing along with their involvement

in biomedical treatment programs (see Mattes, this issue; Dilger, Burchardt, and van Dijk

2010).

2. This introduction makes also references to other African countries where appropriate. In the

southern African region, there have been many comparable developments with regard to

the incorporation of HIV in ‘‘traditional’’ and religious healing practices, relationships of

care and support in families and communities, and the more recent introduction of ARVs.

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3. Burials in Eastern Africa have been places of contestation even before HIV=AIDS (cf. Cohen

and Adhiambo 1992). However, the large-scale dying of people from the young and

middle-aged generation presented a particular challenge for the reproductive cycles and

intergenerational care arrangements of rural and urban societies.

4. This is not to say that there was no treatment activism at all in East Africa. However, while

individual activists were involved in establishing access to ARVs, the activism movement has

never become as visible and strong as in southern and western Africa. Furthermore, the

multiple faces of activism (e.g., from the side of religious organizations) have not been

explored systematically.

5. These distinctions are often not as clear-cut as such labels may suggest (see Leusenkamp

2010).

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