World Aids Day: Institutionalized AIDS and the Quest for Accountability

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 travelling 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 multi-national drug company Eli Lilly now claims to advance a $15 billion U.S. foreign AIDS budget. 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, 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 the New Partnership for Africa’s Development (NEPAD), the Free Trade Agreement of the Americas (FTAA), Southern African Customs Union (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?

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. 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. 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.

Are “behaviour change”, “education”, and stigma-reducing videos the most appropriate interventions we have available to us in such contexts? Perhaps. But data suggest otherwise. A recent systematic review of evidence in the British Medical Journal indicates that “providing information about health risks changes the behaviour of, at most, one in four people - generally those who are more affluent”. 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 dictate that, as Paul Farmer has stated, "their risk stems less from ignorance and more from the precarious situations in which hundreds of millions live". Even the BBC, in their recent worldwide poll, can confirm such claims. 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. The private reality is that to expose the root responsibilities behind AIDS - rather than focusing on individual behaviours 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). 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 counselling” for the masses.

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.

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 be replicated systematically. The second task is more difficult. 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.

* Please send comments on this editorial - and other events in Africa - to References for this editorial can be found by clicking on the link below.

* Sanjay Basu is at the Yale University School of Medicine, where he studies the influence of trade agreements and health system reform on the spread of infectious and metabolic diseases. For more information: http://www.worldaidsday.org/
- http://www.unaids.org/wad/2003/Epiupdate2003_en/EpiUpdate2003_en.pdf
- http://www.un.org/events/aids/worldaidsday2003.html