Twenty-five Years of AIDS: Reflecting Back and Looking Forward

Peter Piot told the New York Times earlier this year that “2005 was the least bad year in the history of the AIDS epidemic.”

But I am telling you today that we are losing the struggle against this disease: Five million new infections last year, and three million dead, among them half a million children gone. It was the worst year yet for those we’ve lost.

I shan’t attempt a comprehensive analysis of 25 years of HIV/AIDS in seven minutes and thus I will make three brief points hopefully to start a conversation rather than end one.

The first is about the often misdirected energies and efforts, and the paralyzing effects, of the international AIDS bureaucracy; the second is the familiar but indispensable point that AIDS is both a consequence and a symptom of wide and deep global injustice; the third is to take issue with some dear colleagues and others — whom I respect — about the push to “re-medicalize” AIDS and why we must be careful in this regard not to cast AIDS as yet another intractable social ill, drain it of political significance, and give up the fight when we really need to be taking the struggle to the next level.

First, go pick up Alex de Waal’s Famine Crimes. His description of how the humanitarian aid industry has worsened and perpetuated famine, particularly in Africa, provides an analytical framework through which we need to interrogate our work on AIDS. The bottom line? We’ve created a vast infrastructure that is largely unaccountable; self-justifying, pursuing organizational survival and expansion; privileging the policy preoccupations of the major industrialized countries; privileging generalized, international responsibility instead of specific, local political accountability; privileging technical skill and experience over local knowledge; and promoting “development” or assistance instead of social change.

No wonder things aren’t getting better. We’ve created a system designed to fail. Yet in the margins of this system, there remain men and women, yes, heroes for some of us, who are largely forgotten, unknown, ignored or reviled by those who make this machine run. It’s not Bill Gates and Bill Clinton who have made a difference in this epidemic despite their welcome to this meeting as some sort of royalty — the seduction of the money and power they represent has blinded us to what they’ve really delivered.

Second, we need to reinscribe the fight against AIDS as part of a larger movement for social and economic justice. Our heroes knew and know this.

It’s no surprise that where we find HIV/AIDS, we often find other infectious and chronic diseases, including TB, diabetes, obesity, heart disease, athsma, mental illness, and the social epidemics of crime, violence, and poverty. Unless we start looking at the factors, the root causes that drive health disparities — in other words, why some of us get sick and some of us don’t — within our communities, we will be always treating one illness while the “patient” dies of another.

It’s also no coincidence that these multiple epidemics exist among marginalized communities across the globe, among the poor, women, drug users, sex workers, gay men, prisoners, migrants — the social, economic, and political policies that create this marginalization in the first place also push us into the path of oncoming epidemics. Yet, we continue to place our hopes in prevention programs that narrowly construct risk around individual behavior or in some new technology that will save us. Even those who profess to be deeply concerned about HIV prevention like our dear Mr. and Mrs. Gates have little stomach for facing the structural and environmental factors that are the fuel for this great fire of an epidemic; they watch the flames grow higher because to act on these issues moves beyond charity and far too close to politics for comfort.

Third, we need to re-politicize AIDS.

Dear colleagues whom I respect have made the case that we need to “de-exceptionalize” and “re-medicalize” AIDS. I agree that HIV testing must be rethought and that the fact that millions of people live and die without knowing their status is unacceptable. I support making HIV testing easier to do in medical settings, integrating sound, evidence-based public health strategies into our approaches to AIDS, and integrating HIV/AIDS into strengthened systems of care and prevention of infectious and chronic disease in general.

However, the presumption that we need to abandon a rights-based approach to HIV/AIDS in order to do so, is frankly reactionary. The calls to de-exceptionalize AIDS and return it to its proper medical context can easily become calls to turn us back into patients and victims, passive in this epidemic — no doctor likes patients who talk back and neither do our governments. They can become calls to ignore or downplay the social and economic aspects of HIV that I referred to above, push AIDS back into the realm of medicine, where the solutions are only biomedical.

They can become calls to make AIDS as “unexceptional” as all the other ills, both medical and otherwise, that affect our communities, when we should be claiming health for all and social and economic justice as human rights. I know — it’s so unfashionable these days to talk of rights and particularly to fight for them as if one really meant it.

AIDS is essentially a crisis of governance, of what governments do and do not do to and for their people — we have the drugs to treat HIV infection, we have the tools to confront the risks that drive HIV transmission and prevent infection itself — what we don’t have is the national political will necessary to scale up our response.

We have demanded too little from our leaders, excused far too much.

We all sat politely in Thailand two years ago in the midst of a war on drug users; we invite Manto Tshabalala-Msimang to meetings when she should be an international pariah; we allow George Bush to export failed approaches to HIV prevention to the world while he lets close to 50% of black gay men get infected at home; we let Vladimir Putin get away with blocking access to methadone; we let Miles White of Abbott Laboratories tell us that $500 for Kaletra is the price of life for people who make less than a $1 a day; we let Bill Gates fund the abduction of sex workers instead of programs fighting for their rights; we go to the UNAIDS Summit and see countries block any commitments to specific targets for universal access, to any mention of drug users, sex workers, gay men, and other vulnerable groups, to comprehensive sex education or the empowerment of girls (by the way, if this is a women’s epidemic, why do men do most of the talking?).

Except for the cries from a few brave activists, most people in countries around the world affected by the epidemic have not risen up to hold their governments to account — to say these are our rights and these are your obligations.

Yes, I understand some of us work in places where this kind of action is difficult or impossible, but it’s possible in more places on the planet than you think. Perhaps we, those of us with the resources, the ability to change things ourselves or support this kind of work, have a real inability, a blindness and cannot see the epidemic for what it is, a political crisis.

We are at a terrible anti-political moment right now, where the powers-that-be have taken our rhetoric and told us that everything is fine — we’re on your side — you can demobilize and leave the epidemic to us. That is the pernicious message of this conference. Don’t believe a word they say.

It has been the worst year of the epidemic for so many of us. The question is whether we’re going to stand up and make a promise today as one of my heroes, the late, great Vito Russo did back in 1988:

“We’re so busy putting out fires right now, that we don’t have the time to talk to each other and strategize and plan for the next wave, and the next day, and the next week and the next month and the next year.”

We’re going to have to find the time to do that in the next few months. And then, after we kick the shit out of this disease, we’re all going to be alive to kick the shit out of this system, so that this never happens again.