Awards of Courage
Joseph Sonnabend, M.D.
Honoring with Pride 2000 Honoree
Joseph Sonnabend, M.D., made Olympian contributions to the fight against AIDS during years when this was a lonely and thankless endeavor. He designed community-based clinical trials when there were few precedents for such research, and he displayed ethical and professional leadership in virtually every other AIDS-related field of action. He was the founding editor of the journal AIDS Research, which began publication in 1983, and he directed the project that produced the first safe-sex guidelines, How to Have Sex in an Epidemic: One Approach (1983). He was a founder of amfAR’s predecessor, the AIDS Medical Foundation (AMF), in 1983, and he co-founded the PWA Health Group and the Community Research Initiative (CRI) in 1987. Dr. Sonnabend was a researcher at London’s National Institute for Medical Research, where he worked with Alick Isaacs, discoverer of interferon, and he served as Associate Professor of Microbiology at the Mt. Sinai School of Medicine, Associate Professor of Medicine at Downstate Medical Center, and Director of Continuing Medical Education at the Bureau of Venereal Disease Control for the New York City Department of Health. He has practiced medicine in Greenwich Village for more than 20 years.
I became aware of AIDS in the course of my medical practice, which I started in 1978, to treat sexually transmitted diseases. It was in the Village, and the large majority of my patients were gay men. I was seeing kinds of morbidity amongst sexually active young gay men that could not be adequately accounted for, and certainly by 1980 I was well aware that there was, at the very least, a new complicating factor at play among many individuals with multiple sexually transmitted infections.
There were some other people noticing some of the same things, but I was in a unique position because of my clinical and research background. I was trained as a microbiologist, and my entire career, up until this point, had been in academic research in virology and infectious diseases. So you might say that I was specifically trained to see this. It wasn’t just that I had a passing familiarity with the research methodology — this was my life. Immediately before starting my practice, I had worked in the kidney transplant unit of a university hospital. People who receive kidney transplants are immunocompromised by virtue of the medications they receive — so all the AIDS-related illnesses were totally familiar to me.
Yet when I did meet, in 1982, with Jim Curran, coordinator of the CDC’s AIDS task force, I was dismissed as someone with nothing to offer as a researcher. From 1978 onwards, the fact was that I was just a VD doctor. I understood the urgent need, and I desperately wanted to help, but I was basically told to mind my own business and just take care of my patients. As a consequence, through the early years of the epidemic, I created my own institutions — like the AIDS Medical Foundation, which was the predecessor of amfAR. What happened was that I had started several research projects with colleagues as far away as Kyoto, Japan, and I went to work in the lab at New York University, for no pay. My feeling at this point, in 1981 and 1982, was that this was an emergency. I had no doubt. So I put everything else aside and I was naïve enough to believe that things would be taken care of, that one just had to focus on what was important and respond in the best possible way. But what happened instead was that I got into terrible financial trouble — because I was paying out of my own pocket to ship specimens via Federal Express, and because I had less time to attend to my practice, seeing patients. It got to the point where Mathilde, who was a personal friend, was keeping me afloat. She came and set up my office, and the furniture you see in my apartment is there because of her concern and generosity. She was a lifesaver, and not just for me. Ultimately, a patient of mine who was a lawyer suggested that we start a nonprofit foundation, and we called it the AIDS Medical Foundation. Without Mathilde, of course, there would have been nothing — she devoted extraordinary energy to this endeavor and the necessary fund-raising.
I think everything that I’ve done with respect to AIDS has been predicated on a "do it yourself" principle — since we can’t rely on the government, we’ll do whatever we need to do ourselves. Take my involvement with prevention education, together with Michael Callen and Richard Berkowitz. I’m not sure who "invented" safe sex, but it is perfectly true that our publication, in 1983, called How to Have Sex in an Epidemic, was a first. It was based on my particular view of what was going on then, which was before HIV was discovered. It said basically that we don’t know what causes AIDS, but we have some theories, and based on them, just as a means of getting on with life, this is what we propose — condoms. This is what it boiled down to. Now, you have to remember that the idea of a gay person using a condom in 1983 was totally ludicrous. Michael and Richard and I were not popular people. It took a disaster to get people to listen.
If you look at the history of community-based trials, too, you will see this "do it yourself" sentiment. This was far preferable to wringing our hands and waiting for the government to spend money — which was silly, because they spent it wrong anyway, and after all, it’s how you use the money that counts. Traditionally, clinical research happened in medical centers. But you need large numbers of patients to conduct an effective clinical trial, and I realized that the bulk of the people who had this new disease were being seen in the offices of doctors like myself, and that these patients were, in fact, a precious research resource. As a consequence, the AIDS Medical Foundation organized very early clinical trials, in 1984. It made the point that community-based clinical trials were possible. The CRI — which Mathilde also helped form, when this work was not yet part of amfAR’s mandate — continued the work. If you look at my involvement with the PWA Health Group, which imports AIDS treatments unavailable in this country, and my involvement with treatment activists, these also came from the same sense that people must rely on themselves.
It is my philosophical conviction that expert opinion should be met with an element of skepticism. And there are ways in which we all can do this — for instance, you can ask generic questions like, "Are there people who disagree with you? Who are they?" Then you go out and talk to them. And you also look at whose payroll your experts are on. Unfortunately, it is easy to become dependent on the scientific leadership you set out to question, to lose the pioneering spirit. But I do think that constructive confrontation is healthier than unquestioning collaboration. It is important to maintain one’s identity. This is where movements for self-empowerment can get derailed.
Thanks to the new drugs we have, there are indeed people alive today who would otherwise be gone, and that’s a wonderful blessing. But I wish we knew how to use these drugs best. The only thing we know for sure is that very sick people will be helped — beyond any doubt they are really helped. What we don’t know is whether people who are asymptomatic ought to be taking drugs for ten years — we just don’t know what that’s going to do to you. And if we were in a saner situation, we would say, "We need an answer, the only way to get an answer is to do a trial, so let’s do a trial." There is little hope that this will happen, but I never lose any opportunity to keep that hope alive.
It has been a very full 20 years, and it is quite true that I feel the burden of history. My involvement has been as a laboratory scientist, as a physician, as a clinical researcher, as a community activist, and as a sexually active gay man. And all these involvements have been intertwined over time, and it has been burdensome. It is very difficult to recount, because I’ve witnessed so much failure, and it’s simply not a failure that the discovery of protease inhibitors can obviate. My experience has caused me to question what I used to take for granted — that societal institutions are oriented toward the pursuit of the public good. And until 1978, it never even occurred to me to question this. So I have come to understand that "the authorities" are not necessarily committed to our well-being. Of course, I should have known that from early on. It’s a treacherous world, and tragedy unfortunately is often used by some to their own advantage. This is a sad realization, and I would be happier today had I not learned the lessons of the last 20 years.