Commune of Shell Shocked Soldiers Springs Up Then Quickly Crumbles, Inexplicably
"In Stockholm the bags were a bright blue." Thus begins David Barr's quirky personal account of the dozen or so international AIDS conferences which often served as the backdrop for a decade and a half of community organizing, political maneuvering and crash course self-study in the medical sciences, biostatistics and governmental rules and regulations.
From storming the conference stage at the open plenary in Montréal, to stalking Margaret Fischl outside a San Francisco motel, to the maladroit ogling of an ice cream barista at a Florentine gelateria, David's "irreverent, more factual than you might imagine and sort of self-serving recollection with digressions" history of the international AIDS conference is a rare synthesis of the public and private faces of AIDS treatment activism over the years.
I can only view my life as Before and Since AIDS. Since AIDS, especially from 1987-2001, it became extremely difficult to keep track of time. The best marker I have is the International AIDS Conference. I can usually best remember when an event happened based on its relation to the conference. The Conference is a ritual where, like all rituals, different people play out their roles, engage in theatrical behaviors, and go through some kind of emotional metamorphosis allowing the participants to move on to the next stage of life. Like most rituals, it is an acknowledgement of the past and a preparation for the future. Perhaps their best purpose is as markers in time. You can use rituals like these, especially ones that occur regularly, to tell a story. So this is a story. An incomplete one. Not really of the conference. But of my attendance at the ritual that is the conference.
AIDS took over my life in 1987. I had already begun working on AIDS issues in 1985 as a legal intern at Lambda Legal Defense and Education Fund. But in 1987 I became a staff attorney at Lambda and joined ACT UP. AIDS became my life. In 1989, I took my first (and last) HIV test, tested positive, and figured I would die sometime over the next few years. Thirteen years later I am still around for reasons I both do and do not understand. Mostly, I think I have been very lucky. The whirlwind that began for me in 1987 caused me to lose touch with all my friends from before that time. AIDS became not only a personal health crisis for me, but engulfed the community in which I live, and completely dominated my professional and social life. I lived with the people I worked with and watched too many of them sicken and die. But, again, I have been very lucky, and my closest friends are somehow still alive.
After 1987 my life became a communal one, and the commune was built around a disease and our struggle against it. That struggle against AIDS and death became a way of life. In my effort to not let AIDS consume me, it consumed me. All my time, working and social, was centered around AIDS, and through it I was able to build strong and lasting relationships and a career of work that is satisfying in ways that few people ever get to experience. This is the most confusing thing of all for me. The horror that is AIDS has brought me both terrible pain and incredible good fortune because of the people and experiences I have encountered through my work. It feels strange to say this -- and it will probably be mischaracterized -- but I think it is important to deconstruct our experiences as AIDS activists. And that means talking about both the good as well as the bad. Maybe one way to say it is that AIDS is bad, but activism is good -- and a good way of life.
We were a relatively small band of people, the AIDS treatment activists. My recollections of the conference, as well as the endless series of ICAACs, Retroviruses, FDA meetings, ACTG meetings, workshops, trainings, demonstrations, plane trips, hotel stays, slide shows, strategy sessions, memorial services, really good dinners, really bad breakfasts, et cetera, et cetera, et cetera, mostly involve spending time with my closest friends: our non-stop conversations about this drug, that trial, that researcher, this company, that guy, this guy and every other guy, went on for fifteen years.
The time we had together was affectionate, competitive, furiously angry, grief-stricken, horrifying, and very, very funny. While there were hundreds of activists that I would interact with regularly, there was a small group of about ten people that I really lived with. I thought that these would be my last friendships -- that we would all help each other die. Instead, the relationships were hurt more by time than by AIDS. And now, I look on that period in my life in retrospect. I still work on HIV, but it isn't the same -- and I don't want it to be. Many of these people are still my good friends, but we don't live together as we once did. The commune broke up. So as I recall the AIDS conferences past, mostly I recall my time with my friends. I love them and thank them for all they have given me.
I first attended the International AIDS Conference in 1988. It was held in Stockholm: not exactly a country swarming with HIV, but a pleasant place nonetheless. It was at the end of June and was light out about 23 hours a day. I went with Mickey Wheatley, my comrade-in-arms at Lambda. To save money, we got a cheap flight to Brussels and took the train from there. The Stockholm conference was my first scientific meeting.
If you attended any of the AIDS conferences over the past few years, you would think that community involvement in the conference was always an important aspect of its make up. But that is not the case. One of the most striking things about the Stockholm conference was the lack of organized community participation. This is not to slight the lovely and hard-working Swedish gay community group. They had a presence, but it was not a strong one. I don't remember any speeches by people with AIDS. There were few presentations about community-based programs. The conference was a traditional scientific meeting: a slidefest. The politics of the epidemic were not a part of the program, or at least not to the extent they are now. In fact, the scientists were already complaining that there was too much "soft" science at the meeting.
In Stockholm, the bags were a bright blue. There were two receptions: one on the opening night and another at the City Hall. Both were awash in herring and reindeer. Later, rumors flew that the abundance of reindeer entrées was due to the need to get rid of lots of Chernobyl-exposed meat. The opening reception proved a turning point in history of HIV treatment access because I got drunk with Ellen Cooper, then the Director of the FDA's Antiviral Drug Division.
At that time, AIDS activists were embroiled in a battle with the FDA over the standards for approval of expedited access to experimental treatments. That was long ago. AZT had recently arrived on the scene. We had pentamidine and Bactrim to treat PCP, but not much else. So treatment access discussions focused on getting early access to drugs that were still being tested. The FDA set the standards for when such drugs could be made available through expanded access and compassionate use programs. We argued that the bar was set too high and that people should have the right to take the risk of using an experimental drug when their only alternative was suffering and death.
Just before going to Stockholm, I attended a meeting with the FDA Commissioner, Frank Young, and several department heads, including Dr. Cooper. There were only two of us: Jay Lipner and I. Jay was an attorney who volunteered at Lambda. He started the world's first AIDS legal services program (at GMHC) and had been living with AIDS for a few years by the time I met him in 1987. Jay was my mentor and is one of the many unsung heroes. He died in 1992.
Jay was a feisty pain in the ass. The FDA was nervous about meeting with us, especially the Commissioner, who did not seem to have a firm grasp of FDA policy. His staff corrected him several times during the meeting. There were about thirty FDA people there. Dr. Cooper was the only woman in a position of authority. She was also the only person in the room who was openly hostile to us. (The rest were no less hostile, just less vocal.)
We were arguing about the drug trimetrexate, a potential treatment for PCP. Dr. Cooper argued that there was not enough data to approve even a small early access program. Jay said, "You mean that if I have PCP and I cannot tolerate the other treatments for it, or if those treatments are not working, I should not have access to something that might help me?"
Dr. Cooper said, "Yes, that's right. It might be dangerous."
"But," said Jay, "I may be helped by the drug. If not, I will certainly die from PCP. I don't have time to wait."
Dr. Cooper, who had earned the nickname the Ice Queen, said, "I could do a lot more for people with AIDS if I didn't have to waste my time with people like you." (This quote is real.)
Then Jay let them have it and said, "I am a person with AIDS and I am also an attorney. I have read your regulations and according to my understanding of your regulations, this drug meets the standard for approval. I am going to sue you. I am going to go on television and say that the FDA is killing me with their red tape." And we left.
A few weeks later, I went to Stockholm. There, at the opening reception, surrounded by reindeer meat, was Ellen Cooper sipping a white wine. I approached. We started chatting. First about the meat, then the fish, then the lovely Stockholm light, yada, yada, yada. Sixty or so white wines later, we were deep into the standard for approval of access to experimental drugs. By the time the conversation was over, the Ice Queen had melted. She agreed that she needed to reconsider. A few weeks later, trimetrexate became available. The drug itself turned out not to be all that important, but the standard had changed and would later lead to expanded access for gancyclovir, ddI, ddC, and others.
Before heading home, the community did end up organizing in Stockholm. Appalled by the lack of community involvement at the conference and the lack of much of anything about gay men, a bunch of us decided to hold a community meeting. We printed up flyers and got about three hundred people into a room. Ben Schatz and I facilitated. The group developed a platform about the need for inclusion of people with AIDS in conference planning and the inclusion of more gay-related discussion. The meeting was like a swarm of hornets. Mike Youle criticized the grammar of the Americans. Jim Fouratt fomented dissent. The San Franciscans accused the New Yorkers of being too angry. Yet somehow a document was produced, and consensus reached. We held a press conference and all felt "empowered." When it was over, I got stoned with Cleve Jones (of quilt fame), danced all night at the gay community center, and went home with a lovely Swedish cook.