AFTER TEN YEARS:
THE REALITIES OF THE CRISIS, DIRECT ACTION, AND SETTING THE AGENDA

by Maxine Wolfe, ACT UP NY

Plenary Session talk at Conference on AIDS Activism. March 22, 1997. Hunter College, NY. Co-sponsored by ACT_UP, Undergraduate Student Government at Hunter College and the Student Liberation Action Movement.

In addition to being victims of our early successes and the mythology surrounding them, one barrier which keeps us from realistically assessing the current situation of AIDS activism is that we have not learned how to do that without personalizing everyone wants to name names. My position is that in the midst of an onslaught, people do what people do. Analyzing the situation is not about judging particular other individuals who claim to be part of our movement and it is not about blaming them for our failures. If they, as particular people, were not there, someone else would be in their place. What has happened in the AIDS activist movement has happened before in other movements. Therefore, let me make this clear: I don't care if there are people meeting with drug companies, researchers, Clinton, Shalala, etc. Our job is to figure out what we need to be doing and to organize to do it, knowing that the range of people affected by this crisis will do what they need to do. We simply have to factor their existence and actions into our plans and strategies

This is nothing new for us. When ACT UP NY first started there was a gay bureaucracy in place in New York which got there on the backs of the Gay Liberation Front and the Gay Activists Alliance. They disliked us with a passion because they had a niche in the Democratic Party and within a certain sector of the gay community, and a life created out of being part of that system and circle. The currency people in these positions have within the system is their claim to represent or lead another group of people -- you and me. If we do things our self-appointed leaders and experts cannot control, they are afraid they will lose their positions. Therefore, they want to keep us in control. Eventually, some of them believe that if they weren't on the inside we would get nothing, forgetting that they wouldn't be on the inside if it weren't for us....like librarians who forget that without patrons there would be no libraries or professors who forget that without students they wouldn't have a job.

Regardless of their motivations...and I think these range from opportunism to honest belief...WE MUST NOT LET THESE SELF-APPOINTED LEADERS PREVENT US FROM USING DIRECT ACTION as part of the strategy to end this crisis. WE CANNOT BUY THEIR LINE THAT DIRECT ACTION IS THE IMMATURE PHASE OF A MOVEMENT. I am 55 and make very rational decisions about my political behavior. NOR WILL DIRECT ACTION "RUIN EVERYTHING". This line reminds me of an early ACT UP NY meeting when a PWA came to try to convince us not to do our four day, 24 hour picket of Sloan-Kettering. Hospital officials threatened to close the clinic, a clinic he believed was the best in the city. As most of you know, Sloan-Kettering is alive and well and bigger than ever.

Scientists still want to win the Nobel Prize and get research grants. Witness the revivals of Robert Gallo or David Baltimore. Look at the development of AIDS research institutes at all major medical schools. Do you really think they are going to close up if we hold them publicly accountable for what they do?

Pharmaceutical companies will produce anything that makes a profit. In 1989, a representative of a pharmaceutical company doing no AIDS research said that if AIDS was like asthma, that is, 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. They don't care if their profit comes from your pocket, your insurance company, Medicaid or the World Bank. And, if the Republicans don't give it to them they will get it from the Democrats. They know what non-partisan means.

Politicians have never given anything to anybody for being nice - only for having enough money or for making a big enough public stink so they had to be bargained with. Senators and Representatives are meeting with lots of people with money daily. Being willing to waste time talking with their aides and others lower down in the hierarchy makes perfect sense if you are a Washington D.C. lobbyist whose job and life is built on that. However, when ACT UP Portland wanted to confront their Senator, they simply sat-in at his office and got to him in far less time. When we were looking for someone to sponsor the AIDS CURE ACT, a small group of us zapped Gerald Nadler at a public town meeting and he did it.

Our job is not to be invited to coffee or to schmooze at a cocktail party. OUR JOB IS TO MAKE CHANGE HAPPEN AS FAST AS POSSIBLE AND DIRECT ACTION WORKS FOR THAT. As I've said before, without an "outside", an "inside" is just politics as usual. The government and pharmaceutical companies will use the insiders to legitimate their own positions. For example, after a four year campaign to change the Centers for Disease Control's definition of AIDS, it was a final zap in public at the International Conference in Amsterdam that forced James Curran to agree to a public hearing on the issue. Then, instead of planning the hearing agenda with the activists who had been mounting this campaign for years he contacted a women's policy institute in D.C. who always play "the community representative" role and exist based largely on government funded projects. Though they had done nothing about the issue and knew nothing about it, they willingly went along, agreeing to an agenda in which the government would give their usual line. We found out. We called the head of that institute and told her to call Curran and tell him to call us or else the institute would be the target of our fury. They called Curran. We then forced Curran to invite the people who really knew the story, including infected women, and on the day of the public hearing Curran agreed to change the definition.

THOSE ON THE INSIDE ARE NEITHER OUR SAVIORS NOR OUR MURDERERS. They are simply one piece of the landscape of the AIDS crisis. We have to stop being afraid of offending them or anyone else. They remain our "leaders" and "experts" only if we allow them to do so with our silence. BUT, and this is a big BUT, WE HAVE TO HAVE OUR OWN AGENDA AND GO FOR IT.

So, where are we now and what would we have to do to make this movement continue to be possible, and by that I do not mean going back to the "good old days." I know we have all worked hard and have made some headway for some people. But, in many ways, since Clinton's election we have lost ground. And, some things we have never achieved for example, with two minor exceptions, THERE ARE NO DRUGS WHICH HAVE EVER BEEN TESTED IN ENOUGH WOMEN TO LET THEM KNOW THE PROPER DOSING, a critical issue for safety, effectiveness and resistance.

Today we have the same right wing agenda which has been in place since 1980, a Republican controlled congress and a Democratic President who, despite being in his last term, has revealed his right of center politics rather than, as some naively expected, his left of center politics. He has a stake in looking like he is doing something for us at the same time that he is pulling the rug out from under us and many AIDS activists are still attached to his coattails. Like the women's institute they have a stake in being our representatives. Regardless of their intentions, they are being used to keep us in control. WE NEED TO REMEMBER WHAT NON-PARTISAN MEANS.

The government funded research system is more mediocre and more bureaucratic than ever. University-based researchers depend on the money and have less and less to show for it. The AIDS Clinical Trials Groups (ACTGs) continue to do the research the drug companies don't want to pay for. Their findings are anachronistic by the time they are put out - if they can ever enroll enough people into their studies at all. This is the fourth year of the women's epidemiology study. They are not giving the participants any information from their tests and they wonder why so many women have dropped out. I doubt that they will ever have decent data. They continually present papers at conferences, papers that simply describe their sample demographics. Their resumes are growing, their universities get money, but the women are getting nothing. When Mary Lucey put a questionnaire about protease inhibitor use in the Women Alive newsletter, several of these researchers wanted to get their hands on the data, analyze it, and present it "along with" Mary. WHAT HAVE THEY BEEN DOING WITH OUR MONEY AND OUR LIVES?

With all of our "representatives" in all of these places, why is all of this happening? Why are there so many placebo drug trials? Would you be in one of them? Why are they allowing unethical research trials? Two examples: In Uganda, the Ivory Coast and Thailand, there are now CDC and NIH funded studies, along with those sponsored by WHO, in which variations on the use of AZT to "interrupt" perinatal transmission are being done with placebo arms. Close to 2,000 women are being enrolled. Now, I actually think the women on placebo are better off but given that the U.S. guidelines are based on the belief that AZT prevents transmission, how can our government knowingly allow women to transmit HIV to their children? A Principle Investigator of the trial told us why they can't, according to him, compare AZT to a combo: since, in their view, AZT works so well, a combo might only reduce transmission a couple of more percentage points. This change would not be statistically significant. So, in order to have statistical significance they have to allow one arm to have a high rate of transmission. It reminds me of the researchers at the CDC telling us that they couldn't change the definition of AIDS because it would "mess up our statistics." And, there are more perinatal transmission trials being developed than there are pregnant infected women to be in them, including trials using Glaxo's 1592 which the company refuses to give to PWAs who are resistant to everything else.

Meanwhile, the FDA approved a study, now enrolling in Brazil, the country in the Western Hemisphere which has the second highest number of AIDS cases. This study is comparing AZT alone, to AZT plus Crixivan, to Crixivan alone. It is a clinical endpoint study - that means disease and death. They would never be able to do the study here on ethical grounds alone but also because no one would ever enroll in it. So they are doing it in another country. Brazilian, activists apparently attempted to get support from some treatment activists in the U.S. but were told it wasn't our problem. Many of our so-called "representatives" have gotten completely conservative scientifically demanding these types of clinical endpoint studies, promoting the elimination of expanded access and the like, in the name of needing to know "for sure" what works. Yet, few of them, if any, ever advocate for putting enough women in trials to do gender analysis so that women can know what works. Unless there is a voice in opposition, the drug companies and the government can use these people as an excuse for what they are doing. We have the possibility of having an inclusive, world voice but we are not doing it. Yet this is precisely how we managed to get the CDC definition changed.

We now have a huge network of AIDS service organizations, proliferating daily. Their existence also depends on the continued existence of PWAs. Many of these are not community based at all any more. In fact, many real community based organizations are struggling to survive. The proliferating organizations are professionalized, institutionalized companies in which people are simply earning their livelihood doing this work. 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. A few handful still join direct action. Some might support it even if they don't join it. The majority will not rock the boat, not even signing a petition. Others actively put up resistance to direct action and often act against the best interests of PWAs. For instance, many of them wanted our bodies to fight for Ryan White funding but were willing to sacrifice pregnant women to mandatory testing to get it. In Los Angeles, 7 major AIDS organizations came out in support of mandatory testing for pregnant women. A zap from the women's network of ACT UP forced four of them to back down but how could they do that? And, our friends in D.C. didn't help either. HOW DO WE DEAL WITH THEM?

Finally, we have the media which now basically prints anything the government, drug companies, and our AIDScrats put out. We have the myth of the "changing face of the epidemic ", for one, just because 16 years into this epidemic and only because of our work to change the CDC definition, the government is getting around to counting the cases that were always there. I want to remind you that the AIDSGATE poster in 1987 said "54% of people with AIDS in NY are Black and Hispanic. AIDS is the leading cause of death for women between the ages of 24 and 29 in NYC." In 1990 I gave a talk to AIDS educators and cited the large proportion of elderly women with AIDS. This week the New York Times  discovered the phenomenon 7 years later from a press release from the CDC. It is the media putting out the hype about the proteases and combos. They headline the declining death rate, while the fact that the number of deaths among women increased 32% and the fact that the number of HIV infections occurring daily is increasing are both buried in the last paragraph. Did you know that there were several papers at Vancouver showing that a large percentage of PWAs who ever took AZT or other nucleoside analogs are resistant to protease? Or that 29% of PWAs in rural Iowa who never took protease were resistant to it? Are we going to wait 5 years for everyone to fail on combos before demanding other things? WHAT ARE WE DOING TO COUNTER ALL OF THIS? WHAT ARE OUR IDEAS?

This is the current landscape of AIDS plus the fact that our numbers are low in our respective groups for a lot of reasons and we are not replacing the people we have lost. So, given all of this, what does ACT UP NY have to do and I speak only about ACT UP NY because I am not willing to suggest what others might do.

1. We need to rebuild our base again in the lesbian and gay community.  No organization like ACT UP can continue if it does not have a grassroots base. For ACT UP NY that base, whether people admit it or not, has been and is largely in the lesbian and gay community. This does not mean that people who are not gay or lesbian cannot be part of it, as some always have. It simply means that we have stopped reaching out to the community to which we have the greatest access. This is a big mistake. Young gay people are becoming infected at an alarmingly high rate. Yet, we are no longer visible in the community. We don't have campaigns to organize people around; we don't table; we don't go to bars; we don't have social events. We have become internally focused. We think that if we talk to each other on the internet we are doing something. We have to focus on organizing the unorganized so that we will have more people to do the day to day work of keeping the organization going and creating new ideas for actions. The big mistake in most "progressive" organizations is that they operate by having their "leaders" agree with the "leaders" of other organizations to do "coalition" actions. Lots of signatures and endorsements at the bottom of a leaflet but hardly anybody shows up. We are a bottom-up organization and if there is no bottom there is no organization. I am not talking huge numbers here. I am talking fresh ideas, new faces and some new numbers. We can no longer rely on people to show up because ACT UP is the "in place" to be.

2. We need to go back to national issues, especially treatment issues.  Not just from the perspective of minor changes in research trials but on the larger issues. Who is determining what kinds of research is being done? Where is the money going? How do we get more treatments out there? We need a fresh critique of the research process. What's happening with immune restoration and vaccines and opportunistic infections? We need ideas that are ahead of the drug companies and the government. We have succeeded this territory to others who only believe in meeting with drug companies and with the government as our "representatives" and they have closed the doors to these meetings in our faces. How are we going to open them up again? Other issues need to be handled on a national level, like needle exchange or women in drug trials. With smaller numbers we cannot continue to handle these only on the local level or with individual drug companies or individual researchers. We need to change policy so that all of these will have to comply.

3. But in doing what I have just described, there are three things I believe are essential:

a. People need to start doing their homework again and plan effective, multifaceted campaigns and international campaigns.  I find that lots of people in ACT UP do not have information nor do we work out a position clearly. Ideology is not enough. We need to put time into self-education which was our hallmark. Then we can come up with an agenda and back it up and we can disseminate the information. Can you imagine if no one in the world was willing to be in a clinical endpoint or placebo trial?

b. We need to do our work in public.  We may feel really smart when we fight with people behind closed doors and get them to admit we are right, but if we do not go public with what is going on we might as well not be there. Our actions have to focus on and be public events. This will also enable us to take advantage of the media coverage. IT DOESN'T TAKE a lot of people to do this. REMEMBER BOB RAFSKY CONFRONTING CLINTON or Urvashi Vaid confronting Bush.

c. We need to be creative.  A few people can do a lot if they can come up with some good ideas. These days we are more likely to picket or march or do a rally. This is neither the way to get people to join us nor the best way to make our points, especially with few people. We have to renew our imaginations and come up with new ideas for actions.

AND, MOST OF ALL

4. WE NEED A VISION.  Not a vision of what action to do on World AIDS day, but a vision of a world without AIDS. For me that means a vision about non-toxic, usable, treatments which have been tested on a range of people and are accessible to all until we have a "cure" or a vaccine. That's what the AIDS Cure Project was about. Nowadays people always talk as if we can't ask for anything but the minimum. Probably the thing that propelled ACT UP early on was the exact opposite attitude. I will be the first to admit that some of this was arrogance and some of it was due to the fact that' the people with that attitude were privileged and expected that they could make the world change. But one has to have those expectations or nothing will happen. High expectations does not mean idealism. We know we will not get all that we demand so we have to demand as much as we need in order to get at least some of it. High expectations means seeing a future and going for it. This will take some collective, focused energy. It will mean that ACT UP cannot be simply a place for lots of people to come to tell other people about their issues, which is what I think it has become in New York. If it is simply an information clearinghouse, let's say that. But if it is a direct action group, let's act like it.

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."

It's time to be those thoughtful, committed citizens again if we want this movement to continue to do meaningful work.

 



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See other writings by Maxine Wolfe:

 

See also Plenary Speech by Donald Grove: Fucked Up Models of AIDS Prevention

 

See also: ACT UP 10th Anniversary Action