Institutionalized AIDS And The Quest For Social Responsibility

There are few moments in the history of AIDS that can call for celebration. The recent decision of the South African government to begin rolling-out antiretrovirals is certainly near the top of the list. But many persons might be tempted to celebrate more widely as December 1st, World AIDS Day, arrives this year, if only because AIDS has received such mainstream appeal that funds now appear to be traveling in all directions, and new programs are announced nearly everyday. Bill Clinton, once the designer of trade sanctions stopping countries like Thailand and Argentina from importing AIDS medicines, now announces generic drug price negotiations. Randall Tobias, a former executive at Eli Lilly, now claims to advance a $15 billion U.S. foreign AIDS budget–a budget declared almost simultaneously with the announcement of a war in the State of the Union Address of the most conservative U.S. cabinet in recent history. If there is anything we can be certain of, it is that AIDS now travels as a key cultural commodity in the most established institutions. But is this cause for celebration?

There is a temptation to announce that AIDS is finally “being taken care of,” that if the farther right-wing elements of U.S. foreign policy are placing the issue centrally in their plans (if for differing reasons, such as the preservation of armies and economies), then something must certainly be getting done. The temptation is to call attention elsewhere, to claim that AIDS has received “enough attention” and may be distracting resources from other problems. But such a temptation is, sadly, completely out of order. Those who would rebut such statements would, rightly, point out that the $15 billion is not only disproportionately small, but has not actually been appropriated. They will point to the limitation of drug price negotiations and the sad fact that press releases consistently belie the sad truths about implementation and the non-existence of effective health programs in the vast majority of sites around the world. They will talk about the infusion of abstinence-only rhetoric; the problems at USAID; and the obstacles posed by NEPAD, the FTAA, SACU, and the new bilateral trade agreements. And they will be right.

But there are other reasons to be concerned; reasons that will likely go unmentioned. These reasons can be revealed when we examine the institutions that now claim to command AIDS, and ask some very simple questions about them: how have they constructed and envisioned their “target populations”? What are the approaches they assume to be effective? Who is to blame, who is to be accountable, and on what basis do “AIDS programs” come to be constructed in these institutions?

The questions can be answered by looking at our public health data, and even the oldest data on AIDS provide clear answers to these questions if we examine them for what they are instead of for what we want them to be. At present, the assumptions of institutions are to institute educational programs, add some antiretrovirals for those already infected, and perhaps offer “culturally competent” videos to reduce stigma in the community of concern. Such is the standard format of AIDS programming today. My contention is that such programming is based on questionable premises. If we look to data from Haiti, we hear the stories of persons who are not simply individuals making “risky decisions”, but those who must engage in sex for the sake of achieving greater priorities than long-term personal health: for tonight’s food, for tomorrow’s money, for some means of security [1]. In the United States, Black women shoulder the epidemic, and their lack of job opportunities leaves them in relationships of economic dependency that make “negotiating sex” a distant luxury and injection drug use a more potent solution to depression [2, 3]. In South Africa, male miners are housed in all-male barracks, worked six days per week, and have letters sent to them informing them that their wives have left or entered prostitution for money [4]. They are given alcohol and prostitutes to prevent them from rebelling, and are called “denialists” (equating their mentality to that of elite politicians) by social scientists who argue that they should be more worried about a disease that will kill them several years in the future than about their 42% injury rate [5]. In Thailand, the crash of primary commodities prices has led to the breakup of stable unions, the loss of job markets for women (contributing to more sex work to add to the prostitution rings started for American soldiers during Vietnam), and the migration of men to depression and alcoholism in the factory sectors of Bangkok [6].

Are “behavior change”, “education”, and stigma-reducing videos the most appropriate interventions we have available to us in such contexts? Perhaps. But our data suggest otherwise. A recent systematic review of evidence in the British Medical Journal indicates that “providing information about health risks changes the behavior of, at most, one in four people–generally those who are more affluent” [7]. Our data on HIV reveal that most persons know of its means of transmission, yet lack the personal agency to act on such knowledge, as the conditions of their lives dictate that “their risk stems less from ignorance and more from the precarious situations in which hundreds of millions live” [8]. Even the BBC, in their recent worldwide poll, can confirm such claims [9]. So why can’t our responsive institutions?

The public response from institutions is that “structural violence”–or the structural realities of poverty, inequality and other problems of power–are simply too difficult to address. Such claims ignore that AIDS activists have changed massive structures for years, from the entire development process of medicines to the housing and healthcare policies of the largest multinational companies in southern Africa [10]. The private reality is that to expose the root responsibilities behind AIDS–rather than focusing on individual behaviors and “cultural” problems–is to expose the institutions who now claim to champion interventions for the disease. The Clinton Foundation would rather not admit its role in creating an intellectual property system that takes public research and development dollars into private hands and leaves the diseases of the poor to market failure; for them, AIDS is a unique issue to be negotiated selectively, rather than addressing the industry that spends 27% of its profits on marketing and 11% on R&D even as it ranks #1 in the world and makes 19% profits as a percentage of revenue (three times the Fortune 500 average) [11, 12]. The World Bank would rather not deal with the association between their policies on agriculture and the subsequent migration of workers and break-up of stable unions; for them, AIDS is an issue of building narrow and specific health services with a few token antiretroviral projects and some “bereavement counseling” for the masses [13].

The institutions who are claiming to champion AIDS do not understand what AIDS activists have long realized: that AIDS is not merely a unique circumstance, but a massive symptom of a much larger disease. That is why the AIDS drug victories in South Africa are not merely celebrated by AIDS activists there, but by land-reform and water rights movements. It is because AIDS drugs are not merely medically necessary, but are also metaphorical: they represent broader inequalities in the distribution of resources. And for institutions to address that would be to admit that AIDS does not “compete” with malnutrition or cholera or respiratory infections. Rather, to truly address AIDS is to address the resource inequalities that drive all of these syndromes forward in the poorest of places in the world.

There are now calls to make AIDS an emergency, an exceptional circumstance for disaster-relief-style initiatives to act upon [14]. Whatever the technical rationale, this reasoning is dangerous: for at this time when AIDS is already being incorporated so quickly into institutions, our task is not to help those institutions view AIDS in isolation. Rather, our task is to alter the meaning of AIDS that these institutions deploy, and to argue that AIDS is a symptom as well as a disease. Our task, as the World Health Organization deploys its new antiretroviral distribution plans on World AIDS Day, is to argue for a return to local geographies rather than new hegemonies, for a sustenance and expansion of funding and efforts from these institutions, but a level of democratic accountability that won’t be achieved if these institutions are allowed to manage the meanings and contexts of AIDS.

What, then, are the tasks for this coming year? I would argue that they are two-fold: (1) to turn research and action towards “structural interventions”, and (2) to change the meaning of what it means to use terms like “blame” and “stigma”. The first task is straightforward but rarely pursued: our research agendas and program implementation still focuses on information and educational speeches, rather than testing how primary commodity prices and housing scenarios and migration patterns affect AIDS, and how the campaigns to reform these resource inequalities can replicated systematically. The second task is more difficult. It has to do with Mary Crewe’s now long-forgotten statement about research on street children who blame other street children and stigmatize themselves: “What is seldom addressed is how, within the framework of their world, their identity is constituted and maintained and how the issues of self-protection and power can be addressed” [15]. In other words, many social scientists and public health workers are wonderful at describing social problems and blame and stigma among the “marginalized”. But few ask what it means to be a marginalized person who must deploy the language of the mainstream, stigmatizing and blaming themselves and their peers for the sake of reducing their “marginalization” and struggling to reach the level of “individual responsibility” needed to be accepted in another social world.

What we need is more than description, but a turn to local geographies to ask how the process of becoming “marginalized” occurs, and why so many of the poor must resort to the language of the rich to stigmatize themselves and subsequently adopt the language of individual “responsibility” for the sake of survival. The answer, once again, becomes one of resources and institutions and power inequalities. We need to examine the basic processes of power, not merely its end pathologies. Because only in our understanding of the processes of power can we hope to find the answers to offer the institutions, and only in our understanding of the processes of power can we hope to take back the meaning of AIDS.

Sanjay Basu is at the Yale University School of Medicine.


1. Farmer, P., AIDS and Accusation: Haiti and the Geography of Blame. 1992, Berkeley: University of California Press.
2. Farmer, P.E., M. Connors, and J. Simmons, eds. Women, Poverty and AIDS: Sex, Drugs, and Structural Violence. 1996, Common Courage Press: Monroe.
3. Connors, M.M., Stories of Pain and the Problem of AIDS Prevention: Injection Drug Withdrawal and Its Effect on Risk Behavior. Medical Anthropology Quarterly, 1994. 8(1): p. 47-68.
4. Williams, B.G., et al., The Carletonville-Mothusimpilo Project: limiting transmission of HIV through community-based interventions. South African Journal of Science, 2000. 96(6): p. 351-9.
5. Campbell, C., Migrancy, Masculine Identities and AIDS: The Psychosocial Context of HIV Transmission on the South African Gold Mines. Social Science and Medicine, 1997. 45(2): p. 273-81.
6. Bello, W., S. Cunningham, and L.K. Poh, A Siamese Tragedy: Development and Disintegration in Modern Thailand. 1998, London: Zed Books.
7. Campbell, C. and Y. Mzaidume, How can HIV be prevented in South Africa? A social perspective. British Medical Journal, 2002. 324: p. 229-32.
8. Farmer, P.E., et al., Community-based approaches to HIV treatment in resource-poor settings. The Lancet, 2001. 358(9279): p. 404-9.
9. BBC, SIDA: ignorancia y preocupación, in British Broadcasting Service. 2003: London.
10. Epstein, S., Impure Science: AIDS, Activism, and the Politics of Knowledge. 1996, Berkeley: University of California Press.
11. Mahan, D., Profiting from Pain: Where Prescription Drug Dollars Go. 2002, Families USA: Washington D.C.
12. Young, R. and M. Surrusco, Rx R&D Myths: The Case Against the Drug Industry’s R&D “Scare Card”. 2001, Public Citizen: Washington D.C.
13. Kim, J.Y., et al., eds. Dying for Growth: Global Inequality and the Health of the Poor. 2000, Common Courage Press: Monroe.
14. Stabinski, L., et al., Reframing HIV and AIDS. BMJ, 2003. 327(7423): p. 1101-1103.
15. Crewe, M., How Marginal is a “Marginalized Group”? Social Science and Medicine, 1997. 45(6): p. 967-70.

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