Yokohama, Vancouver, Twin Pacific Ports, Serve as Polar Opposites for Scientific Advances
Everything About to Change
In a September 1996 report for the Washington Post, science writer Elizabeth Kastor observed, “Hope is a hungry thing, as easily fed by wishful thinking as by certainties” (WP 9/5/96). And so it was, in the fading light of one extraordinary summer, that hope grew fat gorging itself at the twin troughs of imprudent optimism and intoxicated scientific circumspection. While celebratory mobs stampeded aboard the Eradication Express, at least one curmudgeonly Cassandra denied himself a ticket to ride. Shouting obstreperously, “But where’s the data?” at every turn, David Barr came perilously close to acquiring an Iris Long reputation as elocutionary broken record. Instead, he put his money where his (big) mouth was, up and left his comfortable post at Gay Men’s Health Crisis, and devoted the next four years of his life to facilitating a joint effort of government and industry which promised to shed light on the prickly issues of long-term clinical care in HIV infection. And so, the curtain rises on that “Woodstock of AIDS conferences.”
In the words of Mark Harrington, “Never have so many traveled so far for so little.” At the last minute, I decided to stay home. We had rented a house in up-state New York, and I spent my time there. Yokohama produced little progress — either scientifically or politically. The ACTG 076 trial of AZT to prevent perinatal transmission was formally presented there, but everyone already knew the remarkable and unexpected results prior to flying half way around the world.
Vancouver was lovely and the weather was great. Despite my reservations about the treatment hype, there was no question that this was big news — not only the treatments but also the better understanding of how the virus affects the immune system, and the use of viral load testing in clinical practice. Everything was about to change.
The 1996 Vancouver conference was the Woodstock of AIDS conferences, the “eradication conference,” the promise and the glory. But I acted as the curmudgeon. I was nervous that the hype was premature, that we would allow our desperation to guide us and not push for more rigorous studies. I was shouted down everywhere. Even my closest colleagues had jumped on the eradication train.
I had spent the weeks leading up to the conference involved in a series of meetings led by the Keystone Center to discuss how the new drugs, diagnostics and understanding of the virus would affect our clinical research infrastructure. The meetings consisted of treatment advocates, representatives from the National Institutes of Health, the Food and Drug Administration, the Centers for Disease Control, academic research centers, Congressional representatives, health care providers and insurers, and treating physicians.
We all seemed to agree that HIV clinical research would move into a new phase, requiring a more collaborative approach. Instead of focusing solely on drug development, we now had to conduct studies that tested the use of approved treatment strategies in large patient populations. The discussion was a good one, and in our final report we recommended creating a body that would continue the discussion to identify the emerging questions in optimizing HIV care and clinical research.
That body became the Forum for Collaborative HIV Research. And I left my job at GMHC after seven years and my home of 41 years to go to Washington, D.C. to start the project. The federal government and the pharmaceutical industry funded the project. It was started with the blessing of then Vice-President Al Gore, and was led by an Executive Committee that included representatives from industry, government, academia, health care provision, and the AIDS activist community. I ran the Forum for four years.
Once it was on its feet and had developed its agenda and a way of working, I felt it was time to turn it over to someone else. Also, I couldn’t stand being away from New York. So I left. And it is now quite healthy and productive in the hands of Dr. Veronica Miller.
My concerns in Vancouver continued to drive my ideas for the Forum agenda. While the Forum was not successful in getting NIH and industry to conduct large studies examining when to start treatment and the effects of antiviral therapy over time, some progress in that area was made — especially through cohort studies. Meanwhile, the Forum focused its attention on the emerging difficulties in using the treatment regimen.
The Forum held the first meeting ever on treatment adherence, which produced a research agenda that guided HIV research funding. It held the very first discussion about fat redistribution and lipid abnormalities, and produced recommendations that led to multiple studies. It outlined the need for, and ways to develop, treatment education programs for physicians and patients (about how to use the new drugs effectively). The Forum also developed a plan for the federal government to provide treatment education for patients (some of which was actually implemented). The Forum developed the first agenda for “outcomes” research in HIV treatment.
Stephen Gendin arrived in Vancouver with his dog in a bag and his hair dyed like a rainbow. Laurie Garrett complained that he needed a shower, and she was not at all pleased to be seated directly in front of him on the British Columbia-bound 737. I spent a good amount of time with him there. I was lucky to have a really nice hotel room with a great view, and so we had a party there. I spent much of it talking with Stephen on the balcony. He was already pretty sick, and the drugs were coming along just in time.
Stephen firmly believed in “Hit early, hit hard,” and by the time the protease inhibitors came along he was pretty much resistant to everything else. He was on multi-drug salvage therapy from day one of the HAART revolution.
Stephen created the phrase “barebacking,” which means deliberately not using a condom for anal sex. The whole issue created quite a firestorm, and Stephen was in the middle of it all. He was not advocating unsafe sex between HIV-positive and HIV-negative men; but rather, arguing for the importance of allowing people to make their own choices about the conduct of their sexual lives.
The issue started with a reasonable (and I would say, useful) discussion about sexual behavior. But it quickly became sensationalized and Stephen bore the brunt of it. His documentation of his own personal struggles with safer sex and with his illness were published in painfully blunt and self-exposing articles in Poz magazine.
The Geneva AIDS conference was the conference that felt more like a pharmaceutical trade show than any other. Part of this was the set up of the hall: You had to walk through the industry exhibition hall at least twice a day in order to get from the plenary lectures to the other auditoriums and poster exhibition spaces. I don’t think the commercial displays have ever been more elaborate. The slogan of the meeting might have been “Bridging the Gap,” but there was actually not much of a bridge. It was really “Selling the Pills.”
Mark Harrington, Wafaa El Sadr and Eric Sawyer all made good pitches for broader treatment access, but the real push for global access was not to begin for another year when ACT UP Philly and Health Gap began to push hard on Al Gore, Bill Clinton, UNAIDS and industry.
Geneva did pay attention to some of the emerging problems associated with treatment — particularly adherence. Treatment adherence was becoming a hot issue. Not only because it was causing large numbers of people to develop drug resistance, but also because the development of adherence services was a money maker for health care providers and community organizations — many of whom were looking for new things to do since so many of their clients no longer required the kinds of late-stage AIDS services they were accustomed to providing.
Adherence was the new “program.” Not that there is anything wrong with that, but it was a little odd to see so many community-based organizations jumping on the treatment education bandwagon with such a vengeance after being reluctant for so many years. We couldn’t get them to push PCP prophylaxis, even though it probably saved more lives than ritonavir. But once they smelled a funding stream, they were all over it.
I had dinner with Stephen Gendin and his boyfriend, Hush, one night. Having moved to Washington, I hadn’t seen Stephen in a while. He had been quite sick during that time. He was thin and gray. I knew he had had a hard a time. It was good to see him. During dinner, we spent a good amount of time talking about his health. Hush watched over Stephen, and it seemed like things were good between them, if difficult.
The next day, Mike Barr and I had a long talk on the grass outside the conference center, where he told me that Hush had recently seroconverted, that Stephen was the person who infected him, and that Hush was infected with a virus that was already resistant to every single drug — as was Stephen. Later, I would spend much time talking with Stephen about all this. He and Hush both wrote long and personal articles in Poz magazine describing their experience, their unsafe sexual practices, and Hush’s infection.