How 1,500 Dying Activists Outsmarted the U.S. Government

In 1987, there was one approved AIDS drug in the United States. It cost $10,000 a year. And the government's message to the people dying while they waited for more options was essentially: be patient.

ACT UP was not patient.

This is Part 1 of a three-part series on how queer activists didn't just fight the AIDS crisis, they fundamentally changed how medicine works in America. This episode covers the founding of ACT UP in 1987 and its first major action: a demonstration at the FDA that shut down the agency for a day and made national headlines. It covers the organizing genius behind the action, the underground networks importing unapproved drugs from abroad, the Wall Street protests targeting pharmaceutical company Burroughs Wellcome over the price of AZT, and the radical fury that made all of it possible.

Larry Kramer. Peter Staley. The Silence=Death project. A movement built by people who were running out of time and decided to use every second of it.

This is where modern drug approval reform began. And it began with queer people who refused to die quietly.

Watch the video version: https://youtu.be/6BsqMos2oxc
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Transcript

SPEAKER_00 0:00

What happens when a government tells the entire community to sit down, be patient, and die quietly? 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 episode is the first in a three-part series, and I have to be honest, this is the most ambitious thing that I've done on this channel so far. Over the next three episodes, we're telling the story of how a community that was being left to die didn't just survive, they fundamentally changed how medicine works for every single person alive today. It all starts with a fight and a lot of fury. So let's get into it. This week and clear history. Stories told with love and green. In 1987, there was only one drug approved to treat AIDS. And how much did it cost a year? $10,000. And as tens of thousands of people were sick and dying, what was the government's message? Just be patient. But before we start into how the people fought back, I need you to understand how big this was. Because the scale of this, the absolute and deliberate cruelty of all of this, it's something that they never taught most of us in school. On June 5th, 1981, the CDC published a report about five young gay men in Los Angeles diagnosed with a rare pneumonia that healthy immune systems would easily fight off. Two of them were already dead. By September 1982, 593 cases had been reported, with 243 deaths, a 41% fatality rate. They called it grid at first, gay-related immune deficiency. The press called it the gay plague. And the government? The government laughed. Literally. On October 15th, 1982, a reporter asked Reagan's press secretary, Larry Speaks, about the epidemic, and his response. And Ronald Reagan, he didn't publicly say the word AIDS until September 1985, more than four years into the epidemic. His first major speech came in May 1987, by which time 36,000 Americans had died. Surgeon General Koop later revealed he'd been shut out of AIDS discussions for five years because advisors believed the afflicted were only getting what they justly deserved. Federal spending was $8,991 per AIDS death. Compare that to the $36,100 for toxic shock syndrome. And by 1989, AIDS had become the second leading cause of death among American men aged 25 to 44, surpassing heart disease, cancer, suicide, and homicide all combined. Nearly three-quarters of all AIDS death occurred in people in that age range. An entire generation was being hollowed out. But then came AZT, synthesized in 1964 as a cancer drug, but it had failed and sat on a shelf for 20 years. In 1985, government scientists discovered it could block HIV replication. A trial of 282 patients was halted early. 19 placebo deaths versus one on AZT. On March 19, 1987, the FDA approved it in record time. And then Burroughs Welcome, the pharmaceutical company, set the price at $10,000 a year. This was for a compound developed with taxpayer money by government scientists. It was the most expensive prescription drug in history. From 1987 to 1991, it was the only approved treatment. And the standard FDA approval process took 8 to 10 years, while life expectancy after diagnosis was only about one year. This was the perfect setup for radicalization, not ideology, but plain old if this, then that. On March 10th, 1987, playwright Larry Kramer stood before 300 people at the Lesbian and Gay Community Services Center in New York. He asked two-thirds to stand, then he told them they'd be dead in five years. Two days later, Act Up. The AIDS Coalition to Unleash Power was born. Twelve days after that, 250 members descended onto Wall Street. 17 were arrested. Within weeks, the FDA shortened its approval process by two years. Act Up had existed for less than a month. 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. Most of all, thank you for being here. But the real earthquake came on October 11th, 1988. 1,500 act up members arrived before dawn at FDA headquarters in Rockville, Maryland for an action called Seize Control of the FDA. And here's the thing that I am in such awe of. These were the best prepared protesters in history. The treatment and the data committee had produced a 40-page FDA action handbook written by Jim Igo, Mark Harrington, and others, explaining drug approval pathways in precise technical detail. Every protester knew what they were fighting for and could explain why. They staged die-ins on the steps beneath cardboard tombstones, reading, I died for the sins of the FDA. Artist David Wajnorowicz wore a painted jacket. If I die of AIDS, forget burial, just drop my body on the steps of the FDA. Peter Staley, a 27-year-old former bond trader who'd left Wall Street to become a full-time activist, scaled the building and unfurled the iconic silence equals death banner. 176 people were arrested. The day before, Vito Russo had delivered his Why We Fight speech with words that still burn. If I'm dying from anything, I'm dying from the fact that not enough rich, white, heterosexual men have gotten AIDS for anybody to give a sh. Russo died on November 7th, 1990. He was 44. Then Act Up went after the money. On September 14th, 1989, Peter Staley and six activists infiltrated the New York Stock Exchange, wearing suits and fake trader badges. They chained themselves to the VIP balcony, unfurled a cell welcome banner, and blasted foghorns that drowned out the opening bell. The first disruption in the exchange's history. They threw fake hundred dollar bills onto the trading floor, and the bills read, F your profiteering. We die while you play business. Four days later, Burroughs Welcome cut AZT's price by 20%. Over time, sustained pressure drove it from $10,000 to roughly $3,200 a year. And while this was happening, a whole underground was saving lives too. The PWA Health Group in New York served 5,000 people, importing drugs from Japan and Europe. In Dallas, Ron Woodroof, given 30 days to live in 1986, founded a buyer's club and made over 300 trips across the Mexican border, sometimes disguised as a priest, smuggling pills in the trunk of a Lincoln Continental. He lived seven more years. But then there's a piece of this story that often gets left out. Act Up's public image centers on white gay men. The reality was more complicated. Women couldn't even get an official AIDS diagnosis. The CDC's definition excluded conditions that disproportionately affected them. Without a diagnosis, no disability benefits, no clinical trials, no treatment. Katrina Haslip, a black Muslim woman who co-founded AIDS Counseling and Education inside Bedford Hills Prison, broke her probation to join ActUps protests. She fought for four years to change that definition. On January 1st, 1993, the CDC finally expanded it. Katrina died on December 2nd, 1992, four weeks before the definition she'd fought for took effect. She was 33 years old and officially was never counted. And the lesbians. Women who were not dying of AIDS, but who showed up anyway. They served as nurses when professionals refused to touch AIDS patients. They organized blood drives. They brought decades of organizing experience. Vito Russo reportedly insisted on his deathbed. Remember the lesbians and what they did for us. But here's where the episode turns. The FDA began to crack. Doors started opening, but the community realized something profound. Getting attention wasn't enough. They needed to understand the science well enough to change it from the inside. And they got the government to listen, but they had to prove they were smarter than the scientists. And spoiler alert, they were. And we're going to cover all of that in the next episode. But a little bit where I was coming from with all of this. I was not old enough or aware enough to be a part of Act Up, but I did have a small, small sense of what it must have felt like during that time. It was the summer of 2022, and we were having the time of our lives. Everybody was out. The energy was electric and so full of life. But then Mpox hit. And early on, we knew nothing, no clear answers, and in that silence where information should have been, I watched fear do what fear always does. People pulled away, people stopped going out, people started isolating. And I remember how we found out about the vaccine too. It wasn't from a press conference. It was a text from a friend saying, There's an LA clinic offering shots. Go, go get in line right now. And as we hopped in the car, I did what I had just received. I forwarded the text on, onto my friends, and they they passed it on to their friends, and person to person, through group chats and DMs, the very same networking that had happened before was beginning to happen again. And I remember thinking and feeling, is this what it was like? And I know it's not the same, I won't pretend, but that feeling, that feeling of being left to figure it out for yourself, of knowing the official numbers were wrong because you personally knew more people infected than any website was reporting. It all felt familiar, like a repeat, because in the 1980s it wasn't vaccine locations being whispered through text. It was how do I get the meds? How do I stay alive for one more month? And what hits me is that the queer community of that era didn't just survive the crisis, they studied it, they organized around it, they showed up at the FDA's front door and demanded to be treated like their lives were worth saving. And they did it all while they were sick, while they were grieving, while they were burying their friends daily. And those tools they built, the networks, the direct action, the radical insistence on not being quiet, those tools didn't expire. They didn't die. They're still with us, and they are ours, and we are going to face these challenges again. And that's that's not pessimism, it's just the way that history works. And as they come around again, I want us to remember that we have the tools and the strategies to make change. I'd love to hear from you. Did you know anything about the FDA and Act Up? And please drop your thoughts in the comments down below. I read and respond to all of them. And make sure to come back and watch next episode in this series. Next week, it'll be dropping, and we're gonna be covering how these activists literally taught themselves science and changed how drugs are approved, not only for them, but for everyone. And you can check out some more queer history by clicking this video that's popping up right over here, or join us over on our circle community where we keep the conversation going. We talk about history, we have conversations, there's a book club on there, we watch some movies and respond to movies. So join us over on Circle and we'll just keep making those connections. Until next time, stay strong, stay bold, and keep making history.