CAB Member
Jeff was generous enough to share his experiences with ACTG and more broadly with HIV research and advocacy:
Early Diagnosis and Search for Options
I acquired HIV in 1981 or 82 and I knew by 1983 that I had it, even though I didn’t get tested until later. At that point, I had only 200 T-cells and there were no options for treatment. I was literally told, “you have two years to live. Go home and start making arrangements.”
The first thing I did was go to Northwestern’s ACTG site, which I learned about from amfAR. Their journal was really the bible of everything HIV, in terms of treatment opportunities and clinical research trials. They would send it out as a big, thick, paperback catalog, wrapped in a brown paper envelope because nobody wanted anything HIV- or AIDS-related showing up in their mailbox.
At first, my work with research was self-serving. It really was about “how do I keep myself alive?” But then I became fascinated with research and drug development. I participated in the first AZT clinical trials for people who were asymptomatic, ACTG study 019. I received a placebo, which is good, because they were then studying really high, toxic doses of AZT. When the study was over, they rolled me over into another trial where I got the open-label lower dose of AZT. I think that study, and the others I enrolled in sequentially for the next decade, are what kept me alive from 1988 until the protease inhibitors came out in 1996.
From Participant to Advocate
Like many treatment advocates in the early days of HIV, I had no background in science, but I had had a job at the University of Chicago Hospital, working in the neonatal ICU. My parents cut me off when I came out, so I was looking for ways to support myself with a job that would provide good healthcare. It was during the crack epidemic, and some of those babies also had HIV, so that part was really tragic. But they were also doing clinical research there, so I had a front-row seat into how they did informed consent, and what a clinical trial looks like, how it’s placebo-controlled. It let me get my feet wet in terms of learning about how clinical trials work. I could see that these studies were a shot at treatment that people wouldn’t otherwise get, so I knew early on, this is what I need to pursue.
Community groups were just getting started at that time in Chicago. We started to have community meetings in library rooms and community rooms, where people shared whatever information they had, including underground information about alternative therapies. But eventually that coalesced and became the Test Positive Aware Network—which still exists today. It was fascinating to see that happening in real time.
In 1989 I moved to San Diego, specifically because that’s where Dr. Doug Richman was [see the profile from last month’s newsletter]. He was the head of the ACTG at that time and I thought, ‘if anybody’s going to have access to treatments, it’s going to be him.’
Transforming Clinical Research
Over all of these decades. HIV research and advocacy has changed so much about medicine and drug development and advocacy. We started the red ribbon and now there are ribbons in every color. More importantly, clinical trials back then were radically different than they are today. Because there was no standard of care, they were placebo-controlled. And so here you were, you were literally given a death sentence and then they put you in a trial and say, “well, maybe you get the real thing and maybe you don’t,” and the endpoint in those trials was death. That approach just is not ethical anymore. It’s because of HIV that if somebody has a diagnosis like that, they no longer get a placebo. They get a shot at the real thing.
And it goes way beyond clinical trial design. Compassionate use (access to investigational treatment outside of clinical trials when no other treatment options are available) was another advance that came from HIV advocacy. HIV research has also had a huge impact outside of just our space – hepatitis C can now be cured by protease inhibitors, which were developed for HIV. And of course, the mRNA vaccine platform that was designed for HIV vaccines allowed us to create COVID vaccines in record time—saving countless millions of lives.
ACTG’s Role in New Crises
As the premier infectious disease research network, ACTG has been able to pivot in times of crisis. Because we already had the greatest minds in the world assembled, we were able to turn our attentions to COVID and then mpox when that happened. I think having that infrastructure in place is so important.
Personal Mission and Responsibility
When I think about the way that HIV has impacted my life, in many ways it took over. It was literally a death sentence, so I didn’t have a choice but to face it. At first it was so that I would have knowledge and access for myself. And then I realized I needed to leverage my privilege for others, because it became evident early on that a lot of people weren’t getting access. Once we had treatments, the question became, how do we get them to everybody and whom have we left behind?
Funding Cuts and Call to Action
The cuts in federal funding for HIV research in recent months have put us at a real crossroads. If we abandon the science that has accomplished so much and saved so many millions of lives, where are we going to be when the next pandemic comes? I have a sense of incredulousness that we would turn our backs on science that has saved so many for reasons I really can’t comprehend.
What we need to do now is what we did back then. We need to mobilize people who are affected, and that’s going to be just about everybody. We need to help people find their voice and exercise it. We have strength in numbers. And we need to fight back.