We Buried a Generation to Get This Drug. Don't Let Them Take It Back.

In 1996, a new class of HIV drugs changed everything. The protease inhibitors, combined with existing antiretroviral treatments, turned AIDS from a death sentence into a manageable chronic condition for people who could access them. The dying slowed. Friends who had been given months to live started making plans for years.

This episode is Part 3 of "How Queers Saved Modern Medicine," and it tells the story of how that breakthrough happened, and what it cost to get there. It covers the activists and researchers who pushed for faster trials, better data sharing, and international access. It covers the 1996 International AIDS Conference in Vancouver, where the results were announced and the room erupted. And it looks at where we are now: PrEP, the drug that can prevent HIV transmission almost entirely, is under political threat at the moment this episode was recorded.

The activists who fought for protease inhibitors and the Ryan White CARE Act and parallel track trials paid with their grief, their health, and their time. Some paid with their lives. The treatments that exist today are their inheritance to us.

What we do with that inheritance is our responsibility.

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Transcript

SPEAKER_00 0:00

We buried a generation and changed medicine forever. So, why is the breakthrough they died for getting harder to access? Hi there, I'm Chris with a K, and welcome back to This Week in Queer History, where we find hope-filled, inspirational, and strategic moments from queer history that we can use today. This is the final episode of our three-part series, How Queers Saved Modern Medicine. In episode one, we told the story of the fight, how Act Up crashed the FDA and forced the world to pay attention. In the second episode, we told the story of science, how activists taught themselves pharmacology and literally redesigned how drugs get approved. And now we have to talk about what it all led up to and why it matters right now and what we're going to do about it. Let me start with a little triumph because we've earned it. In 1996, the first protease inhibitors were approved. Drugs developed through ACTUP's Treatment and Data Committee's clinical trial system that had been rebuilt from the ground up. The results were staggering. At the conference on retroviruses in January 96, retinovar data showed a 50% drop in mortality. By summer at the Vancouver International AIDS Conference, highly active anti-retroviral therapy, or heart, a triple drug combination, was confirmed to work. Physicians describe patients at death's door standing up and walking out of the hospital. One doctor recorded 37 patient deaths in 95, 10 in 1996, four in 1997, and in 1998, zero. AIDS went from a death sentence to a manageable chronic condition, and it happened because activists had built the regulatory infrastructure to get those drugs to people fast. And that infrastructure kept expanding. The Ryan White Care Act signed in 1990 became the largest federally funded federal program for people with HIV, serving over 500,000 annually. PEPFAR, which launched in 2003, has saved an estimated 26 million lives. The cost of treatment in low-income countries fell from $1,200 per person per year to just $58 in 2023. In South Africa, Zaki Achmat founded the Treatment Action Campaign in 1998 using tactics modeled on Act Up. In India, SIPLA offered a triple drug cocktail for $350 a year. That was a 97% reduction from Western prices. And then came PrEP. Pre-exposure prophylaxis. A huge thank you to the members that you see on screen right now. Your support makes this all possible and it helps me keep digging through archives and sharing the queer history that inspires us. If you'd like to join them, there's a link up above and in the description down below. And if membership isn't in your budget right now, no worries. Subscribing and hitting the bell helps more than you know. But most of all, thank you for being here. A pill that can virtually eliminate HIV transmission. And if you told an act up activist in 1988 that one day there would be a pill that you could take that would make it nearly impossible to contract HIV, they would have wept. Many of them didn't live to see it. But this miracle drug exists today because of them. From the Denver Principles in 1983, when a group of gay men with AIDS declared, we are people with AIDS, and demanded the right to participate in their own treatment to the four expedited drug approval pathways that exist at the FDA today. There's fast track, breakthrough therapy, accelerated approval, priority review. The line is direct and unbroken. Every one of those pathways traces back to the demands made by activists in lab coats on the steps of the FDA in 1988. And since 1992, 278 drugs have been approved through accelerated approval alone. The majority of those drugs now serve cancer patients. And the undetectable equals untransmittable campaign, which is backed by landmark clinical evidence showing zero transmission risk from virally suppressed individuals, has been endorsed by the CDC and over 1,000 organizations across the globe. But here's where the story demands honesty. PrEP access remains starkly inequitable. Black Americans represent 39% of the new infections, but only 14% of PrEP users. 37 states still have HIV criminalization laws. PEPFAR faced severe disruption in 2025 due to foreign aid freezes. UNAIDS warned that this could result in millions of additional infections and deaths. We are watching in real time funding being pulled from the very programs that keep people on their medications, that keep people educated, and that keep people alive. Insurance companies are changing coverage. People I know, not hypothetical, but people in my life have had to switch medication because their insurance stopped covering what was working. And the math doesn't even make sense. The cost of prep prevention is a fraction of the cost of treatment after someone seroconverts. It's just a fraction. So when someone cuts that funding, they're not saving money. They're making a statement. And the statement is your health is not our priority. I mean, would you tell a woman she couldn't access birth control? Because that's that's a similar comparison. PrEP changes the entire trajectory of someone's life. Prevention is healthcare, full stop. And we've heard this before. Different decade, maybe, and different drugs, but the same underlying message. In the 1980s, the system said your lives aren't worth rushing for. And now the system is saying your prevention isn't worth paying for. And if the first two episodes taught us anything, it's that when systems do not act, we should not sit silently and wait. And we never have. The AIDS Memorial Quilt, conceived by Cleve Jones in 1985, now contains over 50,000 panels, commemorating over 105,000 individuals. Each panel is the size of a human grave. It weighs 54 tons and it's still growing. Globally, 630,000 people died of AIDS-related causes in 2024. Peter Staley, or Staley, I'm not sure how it's pronounced, but he was the bond trader who stormed the stock exchange, who scaled the FDA building, who helped change pharmaceutical pricing history. He co-funded Prep for All in 2018, fighting to ensure that pre-exposure prophylaxis reaches the communities that need it most. The echo of the Burroughs Welcome fight is unmistakable. A life-saving drug developed in part with public research dollars, still not reaching everyone who needs it. And here's what I keep thinking about. We've been handed something extraordinary, the tools, the science, the medicine to make HIV transmission virtually non-existent. And it's not a dream, it's here and now. And the people who made it possible, the ones who crashed the FDA, who taught themselves pharmacology in their living rooms, who showed up again and again. They didn't do all of that so that we could watch it get quietly dismantled. Anthony Fauci said it plainly. But it was never just Larry. It was Iris Long with her textbooks, Jim Igo with his regulatory proposals, Mark Harrington with his MacArthur grant, Peter Staly hanging from the facade of the FDA, Vito Russo dying at 44, and Katrina Haslip dying 29 days before the definition change she had fought for. Spencer Cox saving millions and unable to save himself. And the thousands whose names appear on no list except the quilt. So what do we do? Well, we stay educated. We stay loud. Peter Staley's Prep for All is fighting for access right now. Organizations like Housing Works, founded by Act Up members, still the largest aid service organization in New York. They need our support. We need to contact our representatives when funding is threatened. Talk to your doctor about PrEP and art. If you're on it, help someone else access it. Push back every time someone in power contradicts the basic principle that every person deserves access to the medicine that keeps them healthy. Bito Russo promised that someday the AIDS crisis would be over and people alive on this earth would hear the story. We are those people. And the crisis isn't over yet, but we know what the pioneers taught that silence is death, that knowledge is power, and that love, not that sentimental kind, but that fierce, organized, relentless kind, is the only force that has ever moved institutions built to ignore the dying. I remember the first time I saw a prep billboard. I was on my way to work, stopped at a red light on Santa Monica Boulevard, and there it was. It was big, it was bright, and it was impossible to miss. And I remember thinking, this is out here, this is just up here, out in the open on a Tuesday morning, and there's there's no whispers about it, there's no shame. It's just here's a pill, here's what it does, talk to your doctor. And something in that moment opened a little door for me because I understood what it meant, not just for me, but for every person who came before me, who never got to see a message like that, who never got to feel that casual, that safe, that included in their own health care. And I am lucky, I want to say it out loud plainly. I live in a very large city where my doctors bring up PrEP without having to ask. And that access to care, it isn't just convenient, it's a privilege built on sacrifice. But right now, there are people in smaller towns across this country, queer people, young people, women, and prep and art are never mentioned to them. They don't know what they don't know, and that silence isn't a gap. It's a choice someone made not to tell them. We have been handed something extraordinary. The tools, the science, the medicine to make HIV transmission non-existent. And the people who made it possible, they didn't do all of that so that we could watch it quietly get taken away. There is work to do. There's pushing back every single time someone in power contradicts the science, or they contradict the basic principle that every person deserves access to medicine that keeps them healthy. We've been here before and we know what works. Thanks for joining me on this one. This has been an epic big story and it's longer than I usually do on this channel, but I think it might be one of the most important ones that I've done. The pioneers who fought for ACT, who crashed the FDA, who taught themselves science and to save friends, they didn't do it because they were sure they'd win. They did it because the alternative was unacceptable. And that is still very true for today. If you learned something or felt something, please share this series with someone else who may need to hear it. Because our history, it's not just something to celebrate, it's something that we can use. And I'd love to hear your experience with art or prep. So drop those down in the comments. I will read and respond to all of them. And you can check out some more queer history by clicking this link right over here. And you can join the circle community where we keep these conversations going together. We share more history, we ask each other questions, and we build connection. The link is up above and down in the description below. Until next time, stay strong, stay bold, and keep making history.