ACT UP Speech at Toulon AIDS Conference


10th Symposium on HIV Infection
Toulon FRANCE June 17th 1999

It's the cultural medium of our societies which fosters the spread of AIDS. It has long been the affected communities that took the lead in mobilizing the political will necessary to deal with the AIDS crisis. Politicians have never given anything to anybody for being nice -- only for having enough money or for making a big enough public stink. Our job is not to be invited to coffee or cocktail parties. Our job is to make change happen as fast as possible, and direct action works for that. We are not passive participants in this plague.

Activism has become an integral part of the AIDS political landscape. It was 11 years ago when ACT UP first participated at an AIDS conference, but we were not exactly invited. Back then, conferences were "members-only" events for the AIDS establishment, a chance for scientists to associate with their fellow wizards while dispensing wisdom and press releases to exhausted doctors and to a suck-ass press. People with AIDS were presented mainly as abstractions, their lives reduced to statistics, their needs and desires mere sidelines to the noble pursuit of science.

And then came the Montreal Conference in 1989...a group of 300 protesters brushed past the security guards with "Silence=Death" posters at the opening ceremony. There we were, the uninvited guests, taking our place at the table. And when a person with AIDS grabbed the microphone and "officially" opened the conference on behalf of people with AIDS from around the world, even the scientists stood and cheered.

But it was only when we refused to leave the auditorium and parked ourselves in the VIP section that the crowd realized that our actions were more than just a symbolic protest, that we were giving notice that people with AIDS were here to stay. From that point on, researchers would have to make extra room at the table for people with AIDS and their advocates.

Your reactions to our activism are always mixed. While many praise us for breathing real-life issues into the rarefied air of scientific symposia, others complain about our confrontational tactics and accuse us of "introducing politics" into a scientific conference. Some scientists suggest that conferences be split into separate "scientific" and "social" issues, an "inside" and an "outside". Without an "outside", no one is around to tell the emperor he has no clothes.

Without an "outside", the "inside" is just politics as usual. Activists are always "outside". We come inside to hold bureaucracies accountable to the real needs of people and not to the interests of bureaucratic expediency. Everyone expects activists to do their role. While we are more tired and burned-out than ever before after years of knocking our heads against brick walls, there is an ever-increasing need for further direct action in prevention, research, and healthcare.

I come from the only industrialized country in the world without national healthcare. My government gladly spend a billion dollars a day for dropping bombs while selling-out more than 40 million citizens without healthcare. My country has more people incarcerated in prisons than Stalin ever had with his gulags, and the prisons are over-filled by a racist puritanical "war on drugs". Today, AIDS is the leading killer of black men ages 25-44, and the 2nd cause of death for black women of that age. And in a country where half of all new HIV infections are sexually acquired by people under the age of 25, sex-phobia still prohibits AIDS prevention education in schools.

The media is the major source of information on HIV/AIDS and has determined how and when AIDS reaches the public agenda. But the media only presents the picture "drug treatments = fewer AIDS deaths" and effectively eliminates any public urgency. The media does not analyze the escalation of new infections or the inaccessibility of healthcare and prevention. The drama of AIDS is being replaced by it's normalization...and the media is greatly to be blamed.

We now have a huge network of AIDS service organizations. Their existence depends on the continued existence of people with AIDS. Many of these service organizations are no longer community-based at all, they are professionalized, institutionalized companies in which people are simply earning their livelihood. They get money from the government and from drug companies. And, as many of them grow and institutionalize, they fire their lesbian, gay, and PWA employees. The majority of these organizations will not rock the boat.

We have the myth of the "changing face of the epidemic". It was only because of years of intense activist pressures upon the CDC that women's infections were added to the definition of AIDS. The CDC capitulated in changing the definition of AIDS in 1993. In the half-year following, over 9,000 cases in women were reported in just the United States, an increase of 34%. After 18 years, governments are only beginning to count the cases that were always there.

Although we have proven that lots of women with HIV/AIDS are in various stages of illness, we still have not seen large numbers of women in clinical or basic research; we have not seen gender analyses, women-specific studies, or women-specific measures of drug effectiveness. While women account for more than 50% of newly reported cases worldwide, women account for about 11.9% of participants ever to have been in government-sponsored research. Even when there have been enough women in research, comparison of outcomes for men and women have not been done. Most studies don't have enough women to do comparisons. In drug company research, the percent is even lower. And, while there have been about 6,000 pregnant women in government-sponsored trials to study perinatal transmission, studies of anti-HIV or opportunistic infection treatments exclude pregnant women.

We don't know dosing or dose intervals specifically for women, though some data exist for pregnant women. We know how pregnancy influences disease progression, but not how anti-HIV treatments affect the infections women get. Measures of drug effectiveness are based on men. We don't know how treatments for infections like lymphoma or MAC affect women. We know that using fluconazole prevents vaginal yeast infections in women with HIV, but not whether eating yogurt will do the same thing. We don't know about viral concentrations in women's lymph nodes or about long term non-progressing women. We do know that AIDS deaths for women rose while for men they decreased and that survival times are shorter for women than for men.

The last 150 years of medical research has been based on male bodies, perhaps there should be women-only studies for the next 150 years, having men taking the drugs tested only in women's bodies. But of course that would be considered unethical...but so is what we have today.

Government funded AIDS Clinical Trial Groups continue to do the research the drug companies don't want to pay for. Pharmaceutical companies will produce anything that makes a profit. In 1989, a representative of a pharmaceutical company (that was doing no AIDS research at the time) said that if AIDS was like asthma--if the market was big enough--they would develop AIDS drugs. Now, unfortunately, there are many millions of cases all over the world and they know a good market when they see one. You only have to look at their advertising to see exactly how they think. They don't care if their profit comes from your pocket, your insurance company, your government's healthcare budget, or the World Bank.

We don't begrudge drug companies a profit, it's their only incentive for research, and a fact of life in this capitalist world. We just feel, in the time of plague, drug companies should not be making 4 to 5 times more profit than all other existing corporations in the world with NO justification for their profits other than that they are able to charge whatever they want because people have no choice.

And then there is the use of AIDS as social blackmail. In Uganda, the Ivory Coast, and Thailand, there are now American funded clinical trials, along with those sponsored by World Health Organization, in which variations on the use of AZT to interrupt perinatal transmission are being done with placebo arms. PLACEBOS! Would you like to be in a placebo drug arm when it's your life or the life of your child? And in Brazil, the country which has the second highest number of AIDS cases in the Western Hemisphere, there are mono-therapy trials still going on. They are clinical endpoint studies-- that means disease and death. They would never be able to do the study here or America on ethical grounds but also because no one would ever enroll in it. So they are doing it in another country.

Without any scientific data to support it, many health providers don't prescribe protease inhibitors to people who appear to be active illicit drug users, on the premise that poor compliance with prescribed regimens will result in Multiple-Drug Resistant HIV. How does this play out? If you are a person of color with AIDS, if you have a prison record or a drug treatment record, a doctor is welcomed to make judgments about your character and what kind of healthcare you deserve. Make no mistake about it, skin color and ethnic background is the biggest factor. Reports back from hospitals in the United States are that white people with insurance are on Protease Inhibitors, black people are not.

I think the problem is best summed up by one salesperson from Abbott Labs, which makes the protease inhibitor with the highest incidence of toxicity. When I discussed the problems of drug compliance with her, while she admitted that she did not personally know any people with AIDS, she said: "If you don't want to follow the drug regimen, there are plenty of people out there who do."

People's health condition is being used as blackmail. AIDS dollars can be used to support health services for people with AIDS as long as they are not using drugs. There is a deep level of hostility against large numbers of people with AIDS who DO use drugs. Abstinence-based drug treatment, the only existing model allowed to be funded, is only effective for about 10% of the drug-using population. This means that the majority of people with AIDS infected through unsanitary drug injection will not have access to any health services. This is social blackmail. The bureaucracy says: "if you don't do what we want, then you can go ahead and die," and they mean die in the street.

The issues of the sex trade are also never discussed. We are only comfortable discussing advocacy for people whose lives we are comfortable addressing. This doesn't include sex workers, ever. Here is a population which is harassed by everybody, not just cops, but by customers, pimps, drug dealers, community residents, and the entire media and political system.

I was taught on the knee of ACT UP 10 years ago. Homophobia was used as the primary reason for the entire nation to ignore AIDS. After years of wildfire epidemic, we had a President saying, "This wouldn't be a problem if people would change their behavior". The message was, be straight or die. The gay or queer community did not tolerate this way of thinking. We would not allow our sickness and our death to be used as blackmail to make us straight. Sexuality was not the cause of the epidemic. It was a virus.

While we know more than ever before about AIDS as we enter its third decade, the disease is spreading faster than ever, and gaining ground. There are those who have access to treatment and healthcare and those who do not. This is true at every level throughout the world. Who sets this agenda? Who allows it to occur?

We have the possibility of having an inclusive, world voice but we are not doing it. The social changes that HAVE occured have happened by people taking direct action.

The current landscape of AIDS is the fact that activist numbers are low for a lot of reasons and we are not replacing the people we have lost. This means YOU have to take more responsibility in social issues. I ask researchers and healthcare providers to become more socially political--to take direct action--because in the cultural medium that fosters AIDS, direct action is the only thing that works.

Margaret Mead, world famous anthropologist and dyke, said: "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever does."

speech delivered by James Wentzy 6/17/99
with acknowledgements to many authors