As Final AIDS LifeCycle Ride Ends, Where Does AIDS Research Stand?

When the first AIDS LifeCycle ride rolled down the California coastline in 1994, AIDS was the leading cause of death for people aged 25 to 44. Today, HIV is no longer a death sentence and can be treated, though not cured. This weekend, the ride, which has raised $300 million for research, crosses the finish line for the last time. We take this moment to look back on the strides made in AIDS/HIV research and advocacy and explore the impact federal funding cuts to healthcare will have on stopping the spread of AIDS in the U.S. and around the world.

This partial transcript was computer-generated. While our team has reviewed it, there may be errors.

Alexis Madrigal: Welcome to Forum. I’m Alexis Madrigal. Nineteen ninety-four was a turning point for the HIV epidemic. After causing so much pain and suffering in the gay community in the 1980s—with remarkably little help from the powers that be—awareness and concern about HIV/AIDS had fully saturated the mainstream: the movie Philadelphia, the play Angels in America, Pedro Zamora on The Real World. But despite the increasing attention, the disease continued to kill so many people here in the Bay Area and across the country. It wouldn’t be until 1995 that the first protease inhibitor was approved by the FDA, eventually ushering in a new era in retroviral therapies. It was in those circumstances that the first AIDS LifeCycle ride, then known as the California AIDS Ride, was born. Over the last thirty years, each cyclist has ridden hundreds of miles down the California coast, and collectively, they’ve raised $300 million for research. This weekend, it will come to an end.

Joining us to talk about the long path from the early 1990s to today, we’re joined by Jeff Shih, longtime AIDS activist, first openly HIV-positive member of the San Francisco Board of Supervisors, and a former board member at the California Institute of Regenerative Medicine. Welcome.

Jeff Shih: Thanks, Alexis. Good morning.

Alexis Madrigal: Thanks for being here. We are also joined by Dr. Monica Gandhi, infectious disease expert and a professor of medicine at UCSF. Welcome.

Professor Gandhi: Thank you.

Alexis Madrigal: And we’ve got Jen Kates, senior vice president and director of global health and HIV policy with KFF. Welcome, Jen.

Jen Kates: Thanks. Good to be here.

Alexis Madrigal: So, Jeff, you know, as we noted in the introduction, in 1994, AIDS was the leading killer of people aged 25 to 44 in the United States. You know some of that from personal experience. What’s it like hearing that statistic today, and what was it like for you in the community in 1994?

Jeff Shih: Well, it was frankly scary. You know, I’d lived through the beginning of the epidemic. I came out right before the first cases were revealed. I was living in Austin, Texas. I can still remember a dance floor which, you know, in ‘79 and ‘80 was filled with a bunch of young people like me. And by the mid- to late-80s, I’d look around and I could literally see the people who had been lost—all in their late teens, early twenties—and it was devastating. And then you fast forward to the ‘90s, and there was a huge community response. You know, ACT UP had formed and was so heroic. But things were really grim. And I had moved to San Francisco, and you would walk through the Castro, and you couldn’t help but notice people who were on crutches, who were young people, you know, and it was a really difficult and challenging time.

Alexis Madrigal: Yeah. You know, Jen, you were working in the community too in the late ‘80s and the early ‘90s. How’d that work lead you to where you are today?

Jen Kates: Yeah. So, hearing Jeff speak definitely brought me back. In the late ‘80s—not to totally date myself—I was just graduating college, and there were friends of mine that were affected. And I just felt like I had to do something and became involved in community organizing where I lived on the East Coast, to try to get more of a local response to HIV. And that just solidified for me that I wanted to devote whatever my career was going to end up being to trying to make things better for people living with and affected by HIV and, more broadly, improve health care. And so at some point into that journey—and actually, it was 1994—I went to grad school to get a degree in policy so I could come to Washington and work on policy issues.

Alexis Madrigal: What did you hope you’d be able to do policy-wise?

Jen Kates: At the time, I thought, you know, there was so much to be done. As Jeff said, there was a big community response. But at the time, and especially in the early ‘90s and before highly active antiretroviral therapy—so before we could see that people could, you know, the death rates were starting to fall—there wasn’t a huge federal response. And I felt like, you know, I could hopefully make a difference by working on policy in some way to highlight what kinds of policies could be addressed or could be provided or instituted that could make things better. What were the challenges in the system, nationally and at the state level? So it was a little bit amorphous as a young person, but that was kind of my thinking at the time. And actually, that’s what I do. I analyze policy, so it actually ended up being my career.

Alexis Madrigal: Monica, you were a medical student who was moved by the stigma against people and patients with HIV/AIDS to study it further. Can you tell us what the early ‘90s were like for you?

Professor Gandhi: Yeah. I mean, in the early ‘90s, I was in medical school. And I have wanted to be an HIV doctor since I was maybe eleven. And that was because, yeah, I grew up in a very conservative state, and I was surprised by the stigma. I just truly didn’t understand why you would judge people for something they couldn’t change, and I was very moved by the early reports of HIV—but I was young. And then I went to medical school in Boston, and then I came to UCSF because I wanted to be where the epicenter of the epidemic was. So that meant being in a place where I could see a lot of HIV and learn it. And it was really sad because I came in 1996 at the beginning of the year as an intern, and half of the patients that we admitted at San Francisco General Hospital had very severe infections and were very sick, and there were men dying of AIDS—mostly men. And we would tell their families that they were gay, sometimes for the first time, that they were living in San Francisco, that they were dying. And then by the end of the year—and that was the year when highly active antiretroviral therapy came out—people were rising from the dead. It was incredible. It was amazing to see advances in therapy. They were hard to take, but they did well. And now we’re in a state, this many years later, where they’re very easy-to-take medications. We even have injectable ones. We’re very interested in the medications, but they’re not getting to everyone. And so I’ve been working on that ever since at San Francisco General, working on access to therapy and prevention.

Alexis Madrigal: Jeff, what was that like for you, watching people basically rise from the dead?

Jeff Shih: Well, I always remember I was working on the Roberta Achtenberg for Mayor campaign in 1995. I don’t know what people remember about her, but she was the first LGBTQ person to be approved by the U.S. Senate, and she had a big dust-up with Jesse Helms—a really fabulous, enormously historic individual. And within the campaign, we had a lot of people with HIV/AIDS volunteering, and a lot of them were quite sick and did look like those people I described earlier—very emaciated, looked twenty years older than they actually were. Fast forward a year later, 1996, I’m president of the Harvey Milk Club, and I’m campaigning and politicking in the Castro all the time, and from time to time somebody would walk up to me and give me a hug, and I’d be like, “Who are you?” And they would be this robust, healthy young man—which was always nice to get a hug from, by the way. And it turned out they had had the medications. They had literally experienced what we called the Lazarus effect. And it was really quite stunning.

Alexis Madrigal: You know, people were also—you know, Monica mentioned that these medicines were hard to take. I mean, did you also see and hear about that in the community?

Jeff Shih: Well, I experienced it. I was diagnosed in ‘97, and one of the drugs was Crixivan, which used to give something called kidney sludge as a side effect. There was Ritonavir, which people almost literally wanted to vomit after they took it. I started on Nelfinavir, and Nelfinavir caused diarrhea within 30 to 45 minutes of taking it, and my Muni rides to work were like, “Don’t be late, Muni. Don’t be late.” I can’t tell you—there were times I had to go back home and change. And then there was d4T. They were these D drugs that were really potent but caused, in almost everybody who took them, peripheral neuropathy. So to this day, I cannot feel my toes.

Alexis Madrigal: Wow. Monica, can you tell us a little bit more about how these drugs improved?

Professor Gandhi: Yeah. I mean, that was it. Like, Nelfinavir was the diarrhea drug. Crixivan was the kidney stones drug. They were incredibly hard to take. People would pull over, like, throwing up. It was so hard to take. And so we would actually go off and on the drugs even for a while because we didn’t want people to be on them. They were so toxic. And we did lose people who just couldn’t manage them. But then they got better, and they got better starting in the late ‘90s and early 2000s. And we even got to the first single-pill combination for HIV in 2006. That was one pill once a day where multiple drugs were put in the regimen, and that was amazing—that first single-pill combination. But that was also hard to take, so they kept on getting better and better. And now there are single-pill combinations, and they can be quite side-effect-free. But I always say to a patient when they’re first diagnosed, I say, “If you have a side effect, that is totally my fault. We have so many options in this country. So we will work to find you another one.” And then in 2021, we actually got shots for HIV medications, which is incredible for some, because we’ve been working—at least at San Francisco General Hospital—really hard at Ward 86 to give them to people who are experiencing homelessness or substance use or mental health concerns, because it’s hard to take that pill every day on the street. And we’ve seen really amazing outcomes where people suddenly don’t have to think about one thing, which is HIV. They just come in for a shot every two months and then can go about their day, which can be really hard if you’re living with all these challenges. So that’s where we are. And then we’ll talk later about the fact that all that seems to be being taken away, and it’s unbearable. It’s unbearable.

Alexis Madrigal: Jeff, talk to us a little bit about events like the AIDS Ride. I mean, it started 31 years ago. What was its role within the community, you think?

Jeff Shih: Well, both the AIDS Ride and the AIDS Walk were tremendous opportunities for the community to come together and join the fight. And I think it really is hard to underestimate the community response. And what was really unique about San Francisco, unlike really many other places in the country—even the world—is when AIDS first hit and was devastating and there was a stigma and everybody was freaking out, actually the whole city came together. You know, Dianne Feinstein, Willie Brown in the legislature, Nancy Pelosi, San Franciscans as an entire community—not just the LGBTQ+ community—ran toward that fire. We did this together. It is one of our city’s finest moments.

Alexis Madrigal: We’re talking about the progress that’s been made against HIV/AIDS in the last thirty years. We celebrate the end of the AIDS LifeCycle ride, which rolls for the final time into Los Angeles this weekend. We’re joined by Jeff Shih, longtime activist, first openly HIV-positive member of the SF Board of Supervisors; Dr. Monica Gandhi, infectious disease expert and professor of medicine at UCSF; and Jen Kates, senior vice president and director of global health and HIV policy at KFF. And of course, we want your memories of this time. I’m Alexis Madrigal. Stay tuned for more right after the break.