Enemies at the Gate
Storming Montréal's Palais de Congrès, and Makeshift Battle Stations in Fortress San Francisco
It could be said that NIH-activist relations reached their untenable nadir in 1990. Nearly 30,000 Americans had died of AIDS the previous year, and the National Academy of Sciences announced that the disease would cause more than 50,000 American deaths annually by 1991. Midway through an otherwise unspectacular Bush (père) administration, officials had announced a policy to ban HIV-infected foreigners from entering the United States.
Twelve years on, the image of an international AIDS conference session conducted from behind the barricade of a presumably bullet-proof translucent shield seems either surreal or eerily prophetic. Yet those present at the Moscone Center that stretch of long summer solstice days in 1990 are unlikely to forget the spectacle.
A spring ACT UP attack on the bucolic campus of the National Institutes of Health had upped the stakes with pyrotechnics, blinding walls of colorful smoke, and scores of arrests. Rumor had it that several ACTG researchers had received death threats. And so as the VIth International AIDS Conference convened in June of that year, an auditorium of weary delegates would see only the gray silhouettes of the vilified data presenters (Miami's Fischl, Harvard's Marty Hirsch, Stanford's Tom Merrigan, Seattle's Larry Corey, among others) as they hunkered down in genuine fear for their personal safety.
Activist frustration and fear had become the fear and frustration of these ACTG investigators -- less through any empathic means than through one of insidious infectiousness. A cycle of fear and irrationality had developed, and someone would need to step in to break it. As David Barr continues to chronicle in this final 2002 installment of TAGline, it would require only a few key gestures of courage and generosity to fashion a new dynamic where street trampling storm troopers and the king pins of big pharma could join forces (or at least engage, on occasion, in civilized dialogue) -- and in doing so alter the course of history. Those who would step up to this challenge would be (say what you may) NIAID director Tony Fauci and a handful of forward thinking activists among whom, in San Francisco, included TAG founding director Peter Staley via a heart-wrenching and conciliatory opening plenary address. But wait, this is David's tale.
Location, location, location. Whatever lack of activist presence there was in Stockholm was more than made up by Montréal a year later. Only eight hours on the bus from New York enabled ACT UP, then at the height of its golden era, to send bus loads of people. The opening ceremonies did not go as planned. ACT UP had started picketing outside the conference center. People were walking around in a circle, acting up. Many of us were standing inside the entranceway. Two escalators led to the auditorium upstairs. The hall was not yet open, and we were milling around waiting to go upstairs. The number of demonstrators began to grow. The escalators began to move, a bunch of us got on them. I think I was the second person on the escalator. The security people tried to stop us, but it was too crowded and there was no way they could control the mass moving forward on the escalator. There was no plan. No one thought we were going to take over the conference, but then, it happened.
The demonstrators were the first people in the auditorium. A few hundred of us took the stage, yelling. The hall began to fill up. People seemed supportive -- not that we would have known if they were not. A manifesto was read by Conyers Thompson of ACT UP/New York. He read it again in French. Then we had a problem.
The hardest thing about holding a demonstration is ending it. Unless you get arrested or have managed to get all your demands met, it is difficult to know when to stop. No one was arresting us, and all our shouting wasn't going to end the AIDS crisis at that particular moment. So we just kept yelling.
The supportive crowd got a bit bored and wanted to move on. We didn't want to give up our ground. Finally, we marched off and occupied the front rows of seats that had been reserved for dignitaries. Then the conference organizers got upset and wanted us to move because they had no place to put the Zambian president and the Canadian Prime Minister. We wouldn't budge. This went on for quite some time.
Finally, they started the program. A woman from the Caribbean made a great speech, but used the word victim and the ACT UP members started hissing her. It wasn't pretty. We felt great though. And, we thought that we would be on the front page of every paper all over the world, having taken over the International AIDS Conference what with every reporter watching. Unfortunately for our media hungry selves, another demonstration, in China's Tiannemen Square, shook us off the lead spot. We woke up to a photo of some guy standing in front of a tank.
It was in Montréal that ACT UP released its first Treatment and Data report calling for a parallel track to speed access to drugs. Best of all, no less than Tony Fauci himself told the New York Times that he agreed that it was a good idea. That made the front page and started a round of talks both with government and industry to make expanded access a reality. Bristol-Myers called the ACT UP Treatment and Data Committee and said that they wanted to provide ddI through expanded access and, amazingly, wanted the ACT UP members to assist in developing the protocol.
The program provided ddI to over 25,000 people with AIDS at no cost until the drug was approved. Data from the expanded access program provided important safety data. Not only did we succeed in getting the drug out, but we also proved our argument that expanded access programs and working with patient activists could make for better science and faster drug development.
ACT UP was having a love fest with itself. Montréal was a victory, and we had a great party not only to celebrate but also to premiere the new safer sex porn video starring Peter Staley -- later, TAG's Founding Director. In it Peter covered Blaine Mosley [the towering and often leather skirt and beads clad ACT UP/New York facilitator] with honey and whipped cream. I went dancing with Gregg Bordowitz, who had directed the video and was popping dextran sulfate, the AIDS cure du jour.
At the 1990 conference in San Francisco, I shared a room with Jay Lipner. Jay was on intravenous gancyclovir by then and had brought all his IV stuff with him. There were boxes of saline solution, needles, plastic tubes, and bandages all over the room. Jay would spend a few hours in the room each day giving himself his infusion. It was a very different view of living with AIDS from the theatrics going on at the new Moscone Center. Most AIDS organizations boycotted the San Francisco conference in protest of the U.S. immigration and travel restrictions on people with HIV. These restrictions are still in place today. Of course, the U.S. has probably exported more HIV than any other country in the world. In fact, its immigration policies forced the deportation of many HIV-positive people back to countries where there was, at the time, little HIV, few prevention services, and no care.
I was working for Gay Men's Health Crisis (GMHC), which had helped to spearhead the boycott. I, however, attended the conference because as the treatment policy guy I needed to attend the sessions. I think there were more demonstrations than presentations. Even the conference organized an official march. Some of the researchers were walking around with armed bodyguards in a belated over-reaction to ACT UP's "Storm the NIH" demonstration of May 1990, and its associated vilification. We were a bit surprised by this since we had never engaged in any violent activity. (Okay, Mark Kostopolis did break a window at the FDA.) The only ones whoever got hurt were the demonstrators -- by the police.
Yet despite the tensions that many researchers were feeling, this was a time when the activists and the research establishment began to come together. First there was the issue of ddC. Hoffmann-La Roche, the drug's producer, absolutely refused to develop an expanded access for their drug. Although Bristol-Myers had had a good experience with their ddI program, the folks at Roche would not consider it. We called, met, wrote, but they wouldn't budge. We started a petition drive and went throughout the San Francisco conference getting many of the leading researchers and docs to sign on.
I remember running after Margaret Fischl and catching up to her outside that ugly Marriott Hotel that looks like a Wurlitzer jukebox. When I approached her, she seemed a bit terrified. But when I asked her if she would sign, her attitude changed completely. She wholeheartedly supported the effort and signed up. She was furious with Roche for not making the drug available, as many of her patients in Miami needed it. It was the first time that we were able to join forces with the researchers a bit and get them to do some advocacy.
Our relationship with NIAID was also rapidly changing, thanks in large part to Tony Fauci. He understood the value of developing a good working relationship with us and proposed creating a representative group of patient advocates within the ACTG. That group became the Community Constituency Group. It was a groundbreaking step in bringing patients into the research process. It is still an active part of both the ACTG and the CPCRA twelve years later.
Peter Staley, a person with HIV, the founding Director of TAG and a de facto leader of ACT UP (all leaders in ACT UP were de facto as it was officially founded as a leaderless organization), gave a beautiful plenary speech, acknowledging both the recent actions by NIH to create better relationships with activists and blasting government and industry for not doing enough. Peter was asked to give the speech after Vito Russo had to cancel because of his health. Vito died soon after.
I will take credit for suggesting the final demonstration. Louis Sullivan, the Secretary of Health and Human Services, was scheduled to speak at the closing ceremony. ACT UP was meeting at a Ramada motel planning its activities for the week. I proposed that we not allow Secretary Sullivan to speak, that we drown him out with whistles, yelling, etc. It was Dr. Sullivan who had the authority to change the restrictions on HIV immigration and travel, as well as most other AIDS-related policy. If he wanted to do something about AIDS, he should change the policy, not come to the conference and pretend that he was concerned.
There was some debate about whether we should interfere with his freedom of speech. I felt that the First Amendment was there to protect us from the government, not the other way around. Besides, if the HHS Secretary wants to say something about AIDS, he can do it anytime he wants. This was a rare opportunity to tell him what we thought of his Administration.
The place was packed. When he stood up to speak, there were demonstrators everywhere. We stood up and turned our back on him and started yelling, whistling, and some people were setting off loud fog horns. The audience seemed to be in support of our actions. Dr. Sullivan stood there and waited, and waited. Finally, he started giving his speech. The catcalls and noise continued. No one could hear him, yet he continued. The whole thing went on too long and people started throwing things, first crumpled balls of paper, but then oranges and other stuff. It began to feel tense. He finally finished. Paul Volberding got up and thanked him. We gave a final yell and then proceeded to march out of the building. The audience applauded as we left the auditorium (I think in support and not because we were leaving).
We marched out and onto the street, feeling victorious. (Although we hadn't won anything: twelve years later and the immigration restrictions are still in effect. Empowerment isn't always all it's cracked up to be.) We marched down toward Market Street and ran right into the annual Gay Pride parade with thousands of people watching. The crowd started cheering as they saw us and we marched into the parade route, chanting all the way to City Hall. It was a glorious moment.
Suffice it to say that the most important thing at the Florence conference was dinner. How could AIDS compete with dinner in Florence? It couldn't. Even the most Trotskyite of the AIDS activists were lured by the lasagna. There was also the multitude of Italian guards with several different uniform styles that distracted one's attention from the work at hand. It was the only time I didn't gripe about having to sit at the GMHC booth and hand out stuff, as the guards were very interested in our condom packs. I, of course, offered all types of detailed in depth instruction in their use.
Still, despite the distractions, some work managed to get done. It was the year I made Max Essex mad. The immigration issues were (and are still) unchanged. GMHC took the lead in calling for a boycott of any future International AIDS Conferences in the U.S. until the ban was lifted. Unfortunately for Dr. Essex and his colleagues at Harvard, the next conference was scheduled for Boston and Harvard was the co-sponsor.
There was a flurry of meetings in Florence about this, since planning was already well under way for the Boston conference. The Harvard group tried to assure us that they agreed with our position and would do everything they could to ensure that people would be able to attend the conference, but we wouldn't budge. We said that there was no way that Harvard could make assurances for the U.S. government and, besides, it was the principle of the thing. Our objection was not merely about conference attendance, but about the policy in general and we wanted the International AIDS Society (IAS) and Harvard to take a stand.
While others from GMHC played the moderates, I played the crazed activist. I told them that they could be assured that there would be pandemonium in the streets of Boston if the conference were held there, that we had a year to plan such demonstrations and that we would be there in force. I explained that while we would only organize peaceful demonstrations, we could not be responsible for the actions of other, more frustrated activists. The Harvard folks were furious, and nervous. They ended up moving the conference to Amsterdam. The hotels and others sued them for breach of contract. I don't know what happened with the lawsuits. I remember being deposed about three years after the conference took place.
The lack of a major scientific discovery or any major political event meant that the Florence conference was sort of a let down. In retrospect, we can see a pattern of this happening. San Francisco was a milestone in political mobilization, not just on the part of a small group of activists as in Montréal, but the embracing of a political agenda by many of the researchers, conference organizers -- and even some people within government (when they were able). In San Francisco, the conference became a political event and has been ever since. Also in San Francisco, we began to get excited about an antiviral treatment strategy, having data not only on AZT in people with AIDS, but some on ddI, ddC, early treatment in people with HIV. In San Francisco, there was the articulation of a treatment strategy, albeit unproven. In Florence, we mostly heard about the progress from the year before. But, ahh, dinner. ...
A few food stories -- Greg Lugliani, Communications Officer at GMHC at the time, took the room with the view at the little hotel on the Arno. He had an affair with a busboy from my favorite restaurant, La Cinghale Bianco. When I returned to Florence a few years later, he was a waiter (not Greg, the busboy). One night, after dinner, a whole bunch of us (I know that Mark Harrington was there) went for gelato at the best place in Florence on the unfortunately named Via Stinchi (pronounced "stinky"). The place was packed as usual.
There was one guy, a Florentine, who was particularly attractive. He couldn't have been more than 20 and was with a group of friends, including someone who was probably his girlfriend. Spencer Cox, in our group, was unabashedly ogling this guy and making comments about him to us. He was really being shameless -- even for Spencer -- who was about 20 himself at the time.
The guy noticed the attention and, despite his obvious dissatisfaction, Spencer continued to ogle. The guy finally lost it, and approached Spencer very aggressively, yelling Italian about three inches from Spencer's nose. Spencer started to stutter in response. He couldn't get any words out. He finally said, "I, I, I, I, don't, don't speak any English." We all immediately lost it and started laughing. The guy's friends pulled him back, and we apologized for Spencer -- who was now the color of his pistachio gelato.
The third story involves a dinner I had with Mark Harrington, Dan Hoth (then the Director of the NIAID Division of AIDS), and Larry Corey (then the Chair of the ACTG Executive Committee). It was unusual for Mark and I to be socializing with these two, but a good opportunity. It was one of the few times that we really all got to get comfortable and talk. We went to a nice place on the other side of the river.
We proceeded to order and started drinking wine. I had my share and so did Mark, but Dan and Larry got sloshed. We went through all the ACTG politics. It was a friendly evening. At one point, Larry described his approach to AIDS research, based on his work with herpes. He explained that when he went to work on the herpes virus, he, "looked that virus in the eye and said to it, 'I know you, and I am going to fuck you.'" I appreciated his macho bravado but suggested that he not take quite the same approach with HIV, as it could be dangerous. After dinner, we all went for ice cream and Dan spent a good amount of time trying to psychoanalyze Mark. Of course, finding an AIDS vaccine is an easier task.