When it comes to legendary HIV/AIDS doctors, there are the big celebrated names, like Anthony Fauci, M.D., David Ho, M.D., and Mathilde Krim, Ph.D. And then there’s Joseph Sonnabend, M.D., a gay South African who left medical research work in London in the 1970s to treat sexually transmitted diseases in New York City gay men. He ended up becoming one of the city’s most important early treaters of AIDS, someone whose unusual linking of research and primary care led to the prolongation of many lives as well as the start of two important organizations, amfAR and ACRIA.
Sonnabend died at age 88 on Jan. 24, after having a heart attack earlier in the month, in London, where he’d been living since 2005. His death prompted an outpouring of online tributes from surviving doctors and activists from the early days of the epidemic, during which Sonnabend often theorized that AIDS might be caused by a variety of infections that overtaxed the immune system, not just a single source. Even once HIV itself was identified in 1983—and, of course, once a combination of drugs targeting the virus proved to suppress it came out in the mid-’90s—Sonnabend, while accepting that HIV sparked AIDS, would still theorize that other infections might accelerate or intensify the syndrome.
That theory sometimes got him lumped in with so-called AIDS denialists, those who flat-out did not believe that HIV caused AIDS, which marginalized him somewhat among the HIV clinical establishment. But activists, who were often also his patients, say that that aspect of his career obscures his genius with identifying medications that could treat HIV-related illness and prolong life well before mid-’90s combo therapy made HIV itself manageable.
They also laud his pioneering fusion of research practices and clinical care, and his compassionate, indefatigable bedside manner, which empowered patients with information and options rather than talking down to them. His office may have been disorganized, they say, but at a time when many lacked health insurance, he never turned people away for an inability to pay.
Here, HIV activists and community leaders remember Sonnabend, who in his final years threw himself back into a lifelong passion—composing classical music:
Sean Strub, founder, POZ and the Sero Project:
I first heard about Joe in local gay media early in the epidemic. He was also my partner Michael Misove’s doctor until Michael died in 1988. I got to know Joe and saw his doctoring and his incredible empathy. I started seeing him myself as a patient in the early ’90s. The exact time of your appointment didn’t matter. If there were 10 of us in his waiting room, we did our own triage and whoever was sickest, the most urgent case, went in first. A lot of Joe’s patients helped out in his office in various ways, making curtains, painting, cleaning, helping with filing. I don’t think anyone who saw him ever felt rushed by him. He was so compassionate. He was famous for going to someone’s home to tell them they’d tested positive. Or if you saw him during the day, he’d call that night, asking, “Is your fever any better?”
He remains the standard against which I hold every other doctor. He would present options and make his own recommendations, but he was absolutely clear that the choices were yours. He empowered you to be responsible for your own health care. And he kept people alive longer. Other doctors would say, “Look, you have AIDS, there’s not much we can do.” But Joe always kept trying. He believed there was not a single case of persistent diarrhea that couldn’t be treated.
But he was also a serious researcher. In London in the 1960s, he worked under Alick Isaacs, who co-discovered interferon. Once he got to New York in the 1970s, he advocated for a focus on gay men’s sexual health at the Bureau of VD within the health department. At the time, researchers and providers were two different things, but he fused the two in his work.
His theory that AIDS was caused by multiple factors was a perfectly rational hypothesis before HIV was discovered. Once it was, he acknowledged that HIV alone was enough to make people sick, but still contended that the presence of other pathogens were factors in who was seroconverting and how quickly and severely they got sick. But the AIDS denialists would latch on to things he said to bolster their claims.
Mark Harrington, cofounder and executive director, Treatment Action Group:
I met Joe in 1989. I was being considered to run a conference on community-based clinical trials and someone said, “But first you have to meet Joe Sonnabend.” I had read some of his writings. He was very passionate about promoting prophylaxis [preventive meds] for HIV-related opportunistic infections, especially PCP, and not just focusing on treating the HIV. So I spent a long afternoon with him and [activist] Michael Callen [who died in 1993]. “Are you a mindless promoter of AZT?” Joe kept asking me. [At the time, AZT was the only FDA-approved drug for HIV, but its high toxicity and limited effectiveness caused major skepticism.] It was the start of an incredible relationship in which he mentored me and [fellow activists] Gregg [Gonsalves] and Spencer [Cox] in his knowledge of infectious diseases.
He was one of the few community-based physicians who had a really strong grounding in basic science, infectious disease, and public health. He could diagnose a lot of the weird, unusual infections that were happening in people [living with HIV] from the late 1970s on.
He was gay, but he had kids. I think that coming to New York reflected his choice to be fully gay in the 1970s. He would talk about going to the CDC and making all the straight scientists in the room flabbergasted when he talked about rimming. I met Joe in 1989. I was being considered to run a conference on community-based clinical trials and someone said, “But first you have to meet Joe Sonnabend.” I had read some of his writings. He was very passionate about promoting prophylaxis [preventive meds] for HIV-related opportunistic infections, especially PCP, and not just focusing on treating the HIV. So I spent a long afternoon with him and [activist] Michael Callen [who died in 1993]. “Are you a mindless promoter of AZT?” Joe kept asking me. [At the time, AZT was the only FDA-approved drug for HIV, but its high toxicity and limited effectiveness caused major skepticism.] It was the start of an incredible relationship in which he mentored me and [fellow activists] Gregg [Gonsalves] and Spencer [Cox] in his knowledge of infectious diseases.
He was one of the few community-based physicians who had a really strong grounding in basic science, infectious disease, and public health. He could diagnose a lot of the weird, unusual infections that were happening in people [living with HIV] from the late 1970s on.
He was gay, but he had kids. I think that coming to New York reflected his choice to be fully gay in the 1970s. He would talk about going to the CDC and making all the straight scientists in the room flabbergasted when he talked about rimming.
I became his patient in 1989 as well. Everyone called him “Joe Bono,” because he refused to charge most of his patients. That summer, my ex-lover Jay tested positive for HIV, and we asked Joe to test his T cells. He had only 25, but he was totally asymptomatic. Joe told him he needed to go on [infection preventives] Bactrim and fluconazole and something for MAC [mycobacterium avium complex]. And Joe enrolled him in a trial for [the second HIV drug] ddI, mainly so he could get his T cells measured for free.
Joe treated Jay up until Jay died in 1994. He was an amazing physician. The U.K.’s National Health Service was his paradigm—he believed health care should be free. He’d do whatever it took to keep his patients healthy. He would very carefully go through information and explain it to you. At the same time, he was completely impractical. You’d go in for a check-up and he’d spend 25 minutes telling you about the history of interferon. Meanwhile, all his other patients are waiting outside.
Another story I love about him is that he and another researcher, David Byar at the National Cancer Institute, who had AIDS himself, both loved to play piano, and often they’d play duets for us, during which Joe would look so happy and free. When he retired and went back to London in 2005, he started composing again. He came back to New York in 2013 so we at TAG could give him a Research in Action award and show him our respect. He saw all his old friends and talked about the old days.
He’s right up at the top for me as far as heroes of the pandemic, the gay community, and treatment activism. And he was a happy man. It’s important in the middle of pandemics to remember that we still have to enjoy our lives.
Marisa Cardinale, art consultant and former HIV treatment activist:
Joe and I founded CRIA [Community Research Initiative on AIDS, which became ACRIA, which merged into GMHC] together around 1990 and worked together there for about five years. I knew Joe prior because I worked at amfAR, where I got into community-based clinical trials, doing targeted funding for those efforts. This was before the [mid- to late ’90s] protease era, so the focus was on making an AIDS diagnosis manageable. How do we make people with AIDS comfortable, healthy, and stable? Who’s sick now, and what do they need? And at the time, the best information was coming not from researchers but from community doctors in New York, such as Joe; San Francisco; a few in Boston, D.C., and Atlanta—anywhere with large populations of gay men.
Generally, we were trying to start up trials that investigated alleviating the conditions that made life difficult for people living with AIDS, as well as the avenues of research into the human immune response that weren’t being explored by the pharmaceutical community [which was developing meds to suppress the virus itself]. Joe was a genius, a brilliant man who was an undisciplined and untidy worker, someone whose mind got a little bit ahead of his social interactions, so we complemented each other because I had the ability to make things happen, to find the resources for the ideas he thought of. He was a really warm and loving person and friend.
Garance Franke-Ruta, journalist and former HIV treatment activist:
I think I met Joe through the T&D [Treatment and Data] group in ACT UP. He was very smart, warm, funny, kind, with kind of a wry, sarcastic sense of humor. When we went to Berlin for the AIDS conference in 1993, I remember him telling us over dinner that, as someone who was Jewish and who I believe had family members killed in the Holocaust, he insisted on speaking Yiddish to the Germans. it was close enough to German that they could understand him, but obviously an extinct language there because of the Holocaust.
He also had a lot of crazy stories from the 1970s, because by the time he was sharing them with us, in the late ’80s and early ’90s, times were very different.
Richard Berkowitz, activist, author of Stayin’ Alive: The Invention of Safe Sex:
Michael Callen and I didn’t know each other until Joe told us both that we should meet. I met Joe at the Gay Men’s Health Project in 1978, the month I moved to Manhattan. I had an STD and I said to him, “Tell me whatever I need to do to not get this again.” He was taken aback that I was so upset about a simple STD, so we had a moment of connection, because, as he would later tell me, he was very distraught about how many gay men saw STDs as a mere nuisance that they didn’t mind getting over and over again.
But when AIDS started, I woke up to how serious what was going on was, and I stopped having sex completely. I couldn’t believe how many gay men didn’t want to face it. Joe asked me to come help out in his office if I had time. And after that, he connected Michael and me. Michael called me and I taped the call, and that was the beginning of “How to Have Sex in an Epidemic: One Approach,” in which we pioneered the idea of safe sex, things you could do sexually that did not transmit HIV. We ran every sentence of it by Joe, asking him, “What’s the risk if they come in your mouth? What’s the risk if they don’t?” And the gay porn mag Mandate was going to publish it but could not do so for months, so it was Joe who said, “Let’s publish it as a booklet,” which we did in 1983.
I also became Joe’s patient in 1979 until around 2005, when he retired. I grew up around radical left-wing intellectual Jews, and Joe reminded me of a lot of those men. He spent so much time with you as a patient that I knew he didn’t give a shit about money, because with most doctors, the more patients they see, the more they make. He felt it was really important to find out about your life, your stressors, how you were doing financially and emotionally. Were you depressed? Eating healthy? Active? In a toxic relationship? He really spent time understanding the whole environment each person was living in.
David France, author and filmmaker, How to Survive a Plague:
Almost every single institution that was built in the early HIV pandemic was imagined, inspired by, or physically established by Joe—amfAR, CRIA, the journal AIDS Research, the New York Buyers Club, “How to Have Sex in an Epidemic,” the PWA Empowerment Movement. All of that was driven by him. He launched the first generation of AIDS activists.
As a clinician, he was really unmatched. His sense of urgency and responsibility to his patients was superhuman. Everyone says of him that he kept more of his patients alive longer than any other AIDS doctor, and that wasn’t because he created magic but because he never let a symptom go unexamined or untreated, including preventively. He responded to the battlefield of the body like he was at war, and he did it at great personal cost to his own personal life.
Then there’s the work he did as a scientist. Few people in those early days played both roles. He was in the lab doing bench science right from the start. He didn’t have the character traits of a leader who could stand up in a room and have people follow him, but he created institutions into which others could contribute, like CRIA and amfAR. He named himself the scientific director of amfAR—not the chair or the president or the chief medical officer.
He singlehandedly brought AIDS doctors into using prophylaxis [preventive meds] against the opportunistic infections that were killing people. He conducted a war against the NIH and against Dr. Anthony Fauci specifically [for not endorsing many preexisting medications as preventives for HIV-related infections]. He would write letters about prophylaxis and send them out to doctors. He was embittered, prone to smoldering rages and public feuds. He was the person who alerted NYC doctors to the KS [Kaposi sarcoma] cluster in gay men, the one who got that first article on the cluster [that heralded the AIDS epidemic] into The New York Times in 1981.
He was a contrast with Larry Kramer, who loved gay men but wanted love between gay men to come to a halt. Joe was more about identifying ways for love and sex to go forward safely. When Michael Callen and Richard Berkowitz finally showed Joe a draft of “How to Have Sex in an Epidemic,” he said to them, “You didn’t mention love once. We as gay men have to love our partners enough to protect them, even if that love only lasts for 15 minutes.”
He also kept a book of the dead right from the start. Within two or three years, it had 400 names. He was a bathhouse queen. He knew his patients, spent time with them, and lived their life.