The AIDS Crisis: Episode 6 - Drugs into Bodies

Hey, this is Leon Nefak, I'm the host of Fiasco, but you may also know me from the podcast's Slow Burn, Think Twice, Michael Jackson, and Backfired, The Vaping Wars. I'm excited to be sharing with you the next season of Backfired, titled Attention Deficit, which is now available exclusively on Audible. Backfired is a podcast about the business of unintended consequences. In the first season, my co-host Ariel Pardes and I dove deep into the world of vaping and how the well-intentioned quest for a safer cigarette went awry. Now, we're tackling ADHD and how to push to destigmatize this hard-to-define childhood diagnosis has led to an explosion of stimulant use in kids as well as adults. It's a story about the promise of psychiatry to fix our brains and the power of the pharmaceutical industry to shape how we and our doctors think about what's wrong with us. To hear both seasons of Backfired, go to audible.com/backfired and start a free trial. That's audible.com/backfired. Fiasco is intended for mature audiences. For a list of books, articles, and documentaries we used in our research, follow the link in the show notes. Previously on Fiasco. "Everything I'm reading, everyone with AIDS dies." "We had no other resources but ourselves." There was growing sentiment in the White House that Reagan should deliver a major address to the nation about AIDS. The President gave his first major speech on the subject tonight, one that drew both cheers and "gears." Demonstrators outside marched in memory of those who died of AIDS and called for more research money. "We got the power of you! Fight back!" Jeff died on February 11, 1986. I remember it was the middle of a snowstorm, this huge blizzard in New York. And Jeff died in a sleep and I woke up and bed and found him dead next to me. Robert Vasquez-Pacheco and his boyfriend, Jeff, lived together on the Upper West side of Manhattan. Vasquez-Pacheco was an artist. He was 29 when Jeff died. Jeff was 34. "You know, a shock that was crying and I had quit smoking about a year before and I was sitting on the bed. I was actually clutching his foot, I was sobbing and I was holding his foot. And I thought, "You know what, I have to go get some cigarettes. I'm not going to get through this, so I get cigarettes." And so I walked out of the apartment and walked into this blizzard and as I walked out, I see people on Columbus Avenue on skis going down Columbus Avenue and I thought, "This is too fucking surreal and you know, picked up cigarettes and then came back up and then I called 911 and my friends and everything else." Vasquez-Pacheco had been taking care of Jeff for more than four years at this point. Jeff had gotten sick back in 1981 before anyone knew what AIDS was or how it was spread. During the Vasquez-Pacheco, even hospital staff treated Jeff like a pariah. So he would be in the hospital, they'd put him in an isolation room and then the orderlies would leave, trace the food for him on the floor outside of the room and the fact that they couldn't even walk in to give him the food but they left it out there without even notifying him that the meal, you know, it was horrible. So I saw the way he was treated by people that were supposed to be helping him. As Jeff underwent chemotherapy for his capacities sarcoma, it was up to Vasquez-Pacheco to keep him comfortable. We did a bunch of things like I got Jeff to get into acupuncture. I introduced Jeff to marijuana because he was on chemo. It was sort of a struggle to see how we could do this and how we could get through it and slowly start watching other people dealing with it. After Jeff died, Vasquez-Pacheco wasn't just devastated, he was also furious. What I was left with was equal parts sadness, it's profound sadness of this loss and at the same time I was filled with this rage because, you know, this upheaval in this community that it was experienced so much loss and it was so apparent it was visible that what was happening and people weren't doing anything and people weren't saying anything and people weren't ignoring it. So I was angry at everybody. In his grief, Vasquez-Pacheco joined what he described to me as a consciousness raising a group for gay men. Their meetings took place at the lesbian and gay community center in the West Village. One night, Vasquez-Pacheco and a friend were leaving the center after a meeting. As they made their way out of the building, they had to cut through a large room on the ground floor that was full of people. I said, "Look at the amount of cute guys in this room. What is this organization?" And that's when we went, "Oh my god, it's an AIDS organization." The group called themselves the AIDS Coalition to Unleash Power or Act Up for Short. They had started meeting in March of 1987. After the activist and writer Larry Kramer gave an impassioned speech at the center calling for the establishment of a radical new AIDS organization. Ever since, the group had been getting together at the lesbian and gay community center every Monday night. There was no official hierarchy. Instead, the hundreds of people who showed up tried their best to think and act as one. When Robert Vasquez-Pacheco passed through that act-up meeting, he saw a room of people who seemed to be doing something about AIDS. And with Jeff's death still fresh in his mind, he decided to join them. I was angry. I was pissed. My lover had just died. I was pissed. And I wanted someone to answer for it. And I found a group of like-minded men who were just as pissed as I was. I'm Leon Mayfac. From Audible originals and prologue projects, this is Fiasco. Angry demonstrators managed to close down the Food and Drug Administration today. As fast as they could take one group off the streets, another group sat down. They had signs, you know, "Fouch you, killing us." If you just say, "Let the drug out," then disasters can occur. Drugs and Tobodies was a chance at living. People need medication now. Ten years from now, they'll be dead. In this episode, how act-up confronted the medical establishment and demanded an urgent response to the AIDS crisis. The problem that act-up was created to solve was that six long years into the epidemic, there was still pretty much nothing that doctors could do for people who had AIDS or HIV. At the beginning, people with AIDS had no treatments no matter who they were. This is Sarah Schulman, a member of ACT-UP and the author of Let The Record Show, a history of the organization. You could be rock Hudson with access to the White House and endless money, and you're still going to suffer and die, or you could be a homeless person using drugs, and you're still going to suffer and die. When HIV was first identified in 1984, many believed that scientists would develop a vaccine fairly quickly, the same way they had for other deadly viruses. The government says it hopes to develop a vaccine to prevent AIDS. One of a vaccine is at least two years away. But HIV proved to be uniquely complicated. As scientists would later show, the virus had the highest mutation rate of any organism on record, which made an easy vaccine impossible. Doctors still have no way of fighting AIDS. That means all they can do is hope they'll eventually find something or some combination of things that will stump the disease in its tracks. In the absence of a vaccine, scientists had to think of other ways to attack the virus. In the meantime, people with AIDS resorted to home remedies, like capsules of powdered garlic, shatake mushrooms, and tree sap. Then in 1985, one pharmaceutical company started testing an AIDS drug that showed promise in early human trials. The drug was called AZT. It was originally developed back in the 1960s as a cancer treatment. And like many chemotherapy drugs, it acted broadly on the body, destroying a variety of cells, not just the ones it was meant to target. The drug had been shelved by its manufacturer because it turned out to be far too toxic for patients. But in people with AIDS, AZT appeared to slow the progress of the disease. What we hope to do is to suppress the virus enough that we may attain a remission. I was very excited about the hope of getting something that would help me maintain myself a little bit longer. AZT was the first sign of hope that AIDS could be thwarted through medicine. And while no one was calling it a cure, people allowed themselves to be optimistic. Marty is one of 260 patients in a nationwide study of a drug known as AZT. I saw good. very good when I came into the study. I feel very good now. Whatever it is is working. But the side effects of AZT were brutal. People participating in trials of the drug complained of fevers, migraine headaches, abdominal pain, and nausea. Almost half showed depleted bone marrow cells. A majority developed anemia, and some required multiple blood transfusions. Still, the early results on AZT looked promising enough that the company producing it, Burrows Welcome, ended its clinical trials early. And in 1986, the FDA fast-tracked the drug's release to the public. The cost of AZT was set at around $10,000 a year, which, at the time, made it the most expensive drug ever brought to market. The drug has serious side effects, and it is expensive. But in announcing its release today, the Department of Health and Human Services called it an important step. It so happened that AZT was approved right as act up was starting to take shape. From the beginning, members of the organization were clear that no matter how promising the drug looked, they did not believe it would be enough. Sarah Schulman again. The general tenor was that AZT was not the solution. I think people thought that in certain quantities and combination with other treatments, it could be beneficial for a certain period of time. But AZT alone, and especially at these high doses, was not going to do what it claimed to do. At ACTUP's first-ever public protest, the group gathered on Wall Street where they condemned the exorbitant cost of AZT and accused its manufacturer of profiteering. We are angry, we are action. Direct actions like the Wall Street protest were at the core of ACTUP's methodology. They were usually staged with a kind of theatrical flourish, and they were almost always tied to a set of specific demands. Glory, drugs, it's what we need. All we have is property, we need. Mark Harrington saw a flyer for ACTUP about a year after that first protest. It was 1988, and Harrington was working part-time at a film archive in Chelsea. I was young and curious and fascinated and worried, and terrified, and wanted to learn everything I could. And so one Monday night, I went to the ACTUP meeting in the West Village, which was held every Monday at 7 o'clock. And I was just immediately overwhelmed by the beautiful, powerful energy and solidarity and love in the room from several generations of gay men, many lesbians, a lot of straight women, and very few of any straight men. By the time Harrington joined ACTUP, the group had already worked out a highly disciplined approach to staging protests. One of their strategies was to get arrested and predetermined waves, so that once the police rounded up one group of activists, another would fill the gap, and then another one after that. It meant the action would last longer, and hopefully attract more attention. [CHEERING] In March of 1988, ACTUP organized an action on Wall Street to mark the group's first anniversary. Harrington joined Wave 3 as a trainee. [CHEERING] And we all sat down in an intersection and blocked traffic for at least an hour, chanting and waving condoms in the air. We have been ignoring us all these years, and the only way you get attention from them is to get them where it hurts. And in New York City, of course, traffic hurts. I got arrested, along with my fellow trainees, and we were off to the races. When it was over 105, AIDS demonstrators took their curtain calls in police buses on the way to jail. [CHEERING] And so he was instantly hooked. [MUSIC PLAYING] While protests like the Wall Street Action began to give ACTUP a public profile, members working behind closed doors put just as much effort into something less spectacular, educating themselves and each other. When you would come into the meeting room, the first thing you did was pass along the table, and it would be filled with handouts about all kinds of things, about new medical investigations, about policies, about housing, legislation, communications from incarcerated people with AIDS, issues about mothers, I mean, all kinds of information and you would pick up every flyer. ACTUP's philosophy was that people with AIDS and their allies needed an intimate understanding of what AIDS was, what was being done about it, and what wasn't. But there were regular teachings that you could attend. Whatever it was that you wanted to find out about, you who go to a teaching, and the people who were experts would give you information to read, and they would explain the basics. Mark Harrington, a self-proclaimed science nerd, was drawn to a study group organized by a subcommittee of ACTUP called Treatment and Data. It was a small group of people that was led by a pharmaceutical chemist named Dr. Iris Long, who had somewhat randomly come across an ACTUP meeting and became inspired by the issue and applied her pharmaceutical knowledge to helping us understand pharmacology and drug trials. With guidance from Iris Long, members of Treatment and Data started learning about the drug development process, and formulating new questions about which drugs were being tested and how. They were essentially becoming amateur scientists. More than 80 AIDS treatments are being tested in about 150 studies in the US, according to the FDA, and at several of these drugs that AIDS activists want immediate access to. The process for testing and approving potential new therapies for AIDS ran through two parts of the federal bureaucracy. The drug approval process was handled by the Food and Drug Administration, where they reviewed drugs after they'd gone through test tube and animal studies. If the FDA gave the green light, a drug could move into clinical trials in humans. After minimal study, animal studies, the normal FDA approval process has three phases. Phase three averages four years. The whole process can take from two to 10 years, more than 80. So that was the FDA. The other major component of the drug development bureaucracy was the National Institutes of Health, the NIH. A sprawling agency made up of more than two dozen federally funded research hubs. The part of NIH responsible for developing new AIDS treatments was the National Institute for Allergy and Infectious Disease. We turn now to the man who oversees all AIDS treatment research for the federal government. The government official running this institute during the late 1980s was the same one who runs it today. He is Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Disease. A division of the National Institute-- Mark Harrington, through his work with ACT UP, would come to know Fauci personally. Tony took the helm as the AIDS crisis was deepening. And right as Congress began turning on the spigots of money for AIDS research at the NIH. It was under pressure from Fauci that the White House agreed in 1986 to give the NIH around $300 million in AIDS funding. With that money, Fauci was able to initiate research on several new drugs, including AZT. At that point, I set up drug discovery units. I began to build the clinical trial network. This is Fauci. In an interview we did with him this winter. Subsequent to that first initial infusion of money that we got, the big challenge was going from a disease in which you had no treatments at all, except treating opportunistic infections. And to him is to being able to directly treat the virus. It's important to remember that at this time, there was no such thing as an emergency use authorization for a drug the way there is now. So for a desperate population, early clinical trials, like the ones Fauci was overseeing, were the only way to get access to AIDS drugs. Even if they weren't yet proven to work, many felt that taking them was still better than doing nothing. But as Mark Harrington and his peers saw first hand, getting into the trials was complicated, and some people were shut out of them entirely. We would sometimes go to a hospital where a doctor was running a clinical trial and demand to speak to him and try to find out why nobody was enrolling in his clinical trial, because nobody knew about it. And it's entry criteria excluded people with a lot of AIDS-defining conditions. To understand why certain people were excluded from drug trials, it helps to remember that AIDS is an umbrella term for a variety of conditions that stem from the immune system being destroyed by HIV. Different people experience different AIDS-defining conditions. Some of them you've heard about, like capacities sarcoma and pneumocystis pneumonia, But there are dozens of others. And as Sarah Schulman told me, some AIDS defining conditions that occurred primarily in women weren't included for years in the CDC's official definition of the disease. The government had an official definition of AIDS that listed what symptoms you had to have in order to get an AIDS diagnosis. And women were getting symptoms that were not on the list. So that women were getting AIDS and dying and never qualifying for benefits and not getting access to experimental treatments. If women couldn't get into the trials, the medication could never be tested on them. In practice, drug trials were mostly populated by white men and few, if any, women or people of color. On top of that, participating in a clinical trial often required patients to give up the medications they were already using to treat their symptoms. In some trials, people were asked to give up a medication that kept them from going blind so that they could get a medication that would keep them from getting demented. Like, human beings should not be put in a position to have to make decisions like that so that science can have clean data. In a vacuum, it makes sense to want to test the drug under conditions that allow you to isolate its effect. Any extra variable or interference from other treatments can make it harder to achieve that ideal. Generally, the strict protocols that had been serving the biomedical and clinical research community welfare decades of having highly controlled clinical trials, which now retrospectively we see that it was not ideally suited to the very special circumstances of HIV. Fauci, who has never pressed shy, became the face of the federal government's efforts on AIDS. This meant answering charges that he and his agency were moving too slowly. Here's Fauci being interviewed on PBS in 1986. Do you ever have any feelings of remorse, of regret that the system works the way it does? It certainly is very difficult to see so many young men suffer and die when we don't have a treatment. That is the most powerful impetus for us as contradictory as it might sound to do the study in a scientifically a sound way as possible. Fauci tried to explain that there were good reasons the system was set up the way it was. That if scientists started cutting corners and rushing drugs to market that hadn't been rigorously tested, it would only make things worse. Because trying at this point to say, well, we're really concerned about the patients who have the disease now, which we are in fact quite concerned, let's modify the scientific integrity of the study. The real shame and tragedy will be five years down the pike. If because of that compromise, we still don't have an agent that's safe and effective, we because we compromised our method of testing it. That would be the real tragedy. Robert Vasquez Pacheco saw a different tragedy. To him, it appeared the system just wasn't set up to deal with a new disease that gave most people just 18 months to live. The reality was that the drug approval process could take upwards of 15 years. And so we said, you guys have to change that process. Now, not 10 years from now, they'll be dead. Members of ACT UP had come to believe there were fundamental problems with the drug development process. In the fall of 1988, they channeled their outrage into their biggest public action yet. And so ACT UP was trying to figure out what kind of national action we wanted to do to kind of heighten our message. And whether it should be like say at the White House or at the mall or somewhere else. Now, historically progressive movements had always chosen symbolic objects like the White House or the Capitol. But in this case, one of ACT UP's leaders realized that we should be picking actual obstacles, not symbolic ones, and propose that the action be in Rockville, Maryland at the FDA. On October 11, 1988, more than 1,000 ACT UP members arrived at the FDA's campus in Rockville, Maryland. Many carried signs in the shape of tombstones, decorated with phrases like "Easy Tea" isn't enough, and "Killed" by the FDA. "Thank you all for coming. You are witnessing the largest demonstration ever in front of the Food and Drug Administration." Some protesters came wearing white lab coats and gloves covered in red paint to symbolize that the FDA had blood on its hands. The National Media sent reporters to Rockville to witness ACT UP in action. Ronald Reagan was hoisted in effigy this morning as hundreds of AIDS activists descended on the Food and Drug Administration, determined to shut it down. The charge that while people are dying, FDA delays. The demand that the FDA speed up approval of drugs that show any promise against AIDS. Robert Vasquez-Pacheco was at the protest serving as a marshal, a peacekeeper, essentially. The marshals were the ones who were in charge of sort of crowd safety. We would be patrolling the lines to make sure that people were keeping calm or like, please do not go up into the cop's face, you know, and scream at him. There were about 350 police officers on the scene. Vasquez-Pacheco was wary. Well, I had told people I do not get arrested at demonstrations. I said, I am a Puerto Rican. We disappear into the prison system, you know, so I am not going to get arrested. Someone got a little carried away with themselves and broke a door, a glass door, trying to get in. And immediately the cops descended on it. Of course, myself and some marshals showed up, you know, as well to like, okay, pull people back, you know, keep people safe, pull people back. And the cops, you know, just started arresting people and I remember when the cops just looked at me and said, take that one. Because I had a walkie-talkie. Vasquez-Pacheco and all the others who were arrested in Rockville were taken by bus to the Montgomery County Police Academy, where the police had set up their gym as a temporary detention center. Eventually, they let everyone go. The protest at the FDA was a success. Actup had gathered AIDS activists from around the country in a common cause. And they had made their demands, literally, front-page news. They accused the agency under President Reagan of wasting time in the war against AIDS. That sort of changed everything when they said, oh, wait a minute, you know, these faggots are pissed off. And they're not playing around. In June of 1989, about nine months after the protest in Rockville, the FDA approved two drugs to treat people with AIDS, one for New Mrs. DiSnemonia and one for Cytomegalovirus Retinitis, a condition that left many AIDS patients blind. Both were drugs developed for other purposes that act up had been demanding access to. According to Mark Harrington, the fact that they were finally approved was a sign that the government was starting to listen. The FDA began to think about how to do things differently because they realized that the traditional way of doing studies was too slow for a pandemic. And the traditional way of doing very restrictive enrollment criteria was not only too restrictive for a pandemic like AIDS, but was actually too restrictive period. It was around this time that AIDS activists began to rally around a new slogan, drugs into bodies. It reflected a mix of hope and desperation, suggesting that if only scientists could try enough different drugs, one of them would surely turn out to work. In the meantime, anything was better than nothing. At the time, roughly 50% of gay men in New York City were infected with HIV. This is Geron's Frankie Ruta, who joined ACT UP in 1988 at the age of 17. I mean, just imagine if half the people you went to high school with were suddenly told that they were probably going to die in the next three to seven years. Drugs into bodies was a chance at living. It was pretty simple. Nobody in ACT UP seemed to pay much attention to Frankie Ruta's age. She was outspoken and enthusiastic, and the fact that she was a teenager probably just made her a better activist. I had tears of high school and a GED. But I had very high reading skills and apparently an unbounded sense of confidence, or at least determination. I wasn't doing anything in a calculated way. Nobody was doing anything in a calculated way. It was just this urgent, urgent, urgent need. And the only question asked of anybody is not like, "Who are you or how educated you are or do you have money or do you have the right to do this?" The only question ACT UP asked of anybody is, "Can you help?" if you could help. And people were really happy to work with you on anything. - Like Mark Harrington, Frankie Ruta was drawn to the Treatment and Data Subcommittee. There, she learned about drugs that seemed like they might be worth testing on AIDS patients, including some that were approved in other countries, but weren't available in the United States. At one point, Frankie Ruta started working with a group that was importing such drugs and setting up underground trials in New York. - I was part of the team that decided which medications we would import in this kind of legal gray area. So the idea there was that, we would do sort of citizen science research, read the medical literature, talk to doctors, talk to manufacturers, find out everything that was known about how a medication and a pathogen might respond to each other. There was a category we called what the hell drugs, where we knew that they were extremely safe. We had no idea if they really worked. And we were like, well, can't hurt, might help, what the hell, you know? - But identifying potential drugs was only part of the equation. Making them accessible to people who couldn't wait around for them to be approved was just as important. And during the summer of 1989, act up, rowied around, and idea known as parallel track drug trials. The pitch was that scientists should conduct their clinical trials as rigorously as they wanted. But also, simultaneously, they should make experimental drugs more widely available to people who had the disease. To Harrington and his colleagues, parallel track seemed like a no-brainer. - Even just from the nine months that it was from the CES control of the FDA, our understanding and knowledge about science had grown exponentially in that period of time and our demands were much more precise and much more doable. - To get parallel track in front of the scientific community, Harrington and the others from ACT UP crashed a medical conference in Montreal. It presented their proposal to a group of scientists that included Anthony Fauci. In addition to parallel track, ACT UP sketched out an entire research agenda for which drugs to test and in what order. - When we rolled out the same demands with each one of them that we want this parallel track, research into the opportunistic infections and cancers, research to allow people of color, women, drug users, and children into AIDS clinical trials. And we want it now. - Fauci, at least, was impressed. - They trained themselves, literally to become scientists without, I mean, they were lawyers, they were stock brokers, they were theatrical people, and yet they studied the situation and came up with a research agenda that was really very, very well-founded and extraordinary. And I read it and it was like, wow, we got some really serious partners here. - A few weeks later, Fauci was in San Francisco where he met an AIDS patient who pressed him further on the need for parallel track. - It was articulated to me by a person who was lying in bed, who was on AZT, whose virus was controlled, but it was still very sick. - The patient had a condition that was making him go blind. A drug called Gensai clavier could prevent him from losing his sight, but he wasn't allowed to take it at the same time as AZT if he wanted to stay in the trial. - And I remember when I went to the person's room down in the Castro in San Francisco, and I sat down by his bedside with his partner, and he looked at me and he said, "Dr. Fauci, do you see what the government is doing? You're giving me a choice. I could either take AZT and not Gensai clavier and go blind or I can take Gensai clavier and get maintained by vision and die. What kind of choice is that?" And it became eminently clear to me that we just were not getting it. - The next day, Fauci publicly endorsed parallel track during a town hall meeting. - That's when I decided that I would try and with them help to change the system. It wasn't easy for me, because on the one hand, there were still those among the activists who still didn't think we were doing things well enough and quickly enough, and there were many among the scientific community who thought I was caving in to the activists, but I knew deep down that I was doing the right thing. - Even as Fauci grew more sympathetic to act up demands, many activists continued to regard him with suspicion. - We're with treatment and data committee, and we're going to facilitate this meeting. This is Dr. Anthony Fauci. - In the fall of 1989, Fauci arranged to attend an act up meeting in New York. - Be respectful of people who are talking, that they're not maturing or hissing or booing, that we really try to use this meeting as, let's call it a working confrontation. - I went down to the gay and lesbian community center down in Greenwich Village, literally by myself. I think I had one of my staff was with me, and got in the room where there were about 100 act up people who were bristling within many respects anger and being upset with how the government was acting. - Anthony came up to a meeting of treatment and data, and submitted to basically three hours of tough questions from us, including accusations of genocide. - Hey Dr. Fauci, I don't question you about where your moral commitment is. I'm talking about the practicality of how we get things done. You are in a spot which people say, what the hell is he doing? - And I said, okay, I'm here, I'm with you. I'm sitting down among you. I don't have anybody sticking up for me or protecting me. Let's hear what you have to say. - What we're saying is that people, including yourself in some levels, must have one their conscience, these deaths, why there is a more aggressive movement to make sure that the next opportunistic infections aren't dealt with more effectively and aggressively. - The meeting was quite heavy on the science. Much of the discussion revolved around which drugs should be tested first and how Fauci could more effectively use his political muscle. Fauci agreed with some of the criticism and conceded that the medical establishment could do better. - I agree with you completely. I told you then I'll tell you now, things are better. We could send you a list if you don't already have it, of all of the activities that are going on, but it isn't enough. We obviously still need to do more. - At other points, Fauci aggressively corrected what act up members were saying to him. - No, that's wrong. You gotta keep saying I'm wrong, I'll tell you what I'm going for that hurt. - You see, this is what I mean. You're making presumption, and I'll tell you why you're absolutely wrong. You say-- - In those moments, Fauci could come off as kind of patronizing. - I think that you may be naive and understanding how you can get things done in Washington. You don't get many shots of going out like the lone ranger. You get one shot and get something done if you do that. That's the name of the game. - Oh, I remember that. - Despite the tensions that flared up at that first meeting in New York, over the coming months, Fauci and some of his colleagues started hosting members of the treatment and data group in Washington. Both sides are member of the experience as something of a culture clash. - We learned a lot from them and they learned a lot from us, but it wasn't always a very smooth road. - I remember going to meetings in Washington, D.C., and just getting up to the microphone and asking questions, wearing my $5 mini skirt that I got at the street fair and some parking lot in Manhattan. And they just looked at us like, who are you people? It felt like we were from a totally different world. - In many ways they were. For years now, the activists have been operating in the epicenter of the epidemic. Fauci and his colleagues, on the other hand, worked in bucolic suburban communities far away from the mass death that surrounded ACT UP members in New York. By confronting the scientists directly, ACT UP was forcing them to perceive the crisis more clearly and vividly. - Once the researchers began to know living people with AIDS, it changed people like Tony Fauci, when they began to meet with us, not just his patients, but his activists and antagonists, and people who wanted to get them to do the right thing. And then they would lie awake at night and toss and turn and think about it and realize that in some cases, we were right. And meanwhile, we would be tossing and turning back in New York after a meeting with them. And we would sometimes learn things from them that we hadn't thought of before. And we began going from having an argument to having a conversation and from having a conversation to having a partnership. (gentle music) The newfound alliance between Fauci and the treatment and data group did not mean that ACT UP was done protesting him. There was one issue in particular that the activists were focused on. - We started telling Tony that we wanted him to get us invited to the meeting of the NIH-funded Clinical Trials Network, which was called the AIDS Clinical Trial Group. The AIDS Clinical Trial Group at NIH determined which treatments would be studied and when activists insisted that their new partnership with Fauci was little more than lip service until people with AIDS were part of the group and included in making those decisions. And then he said, yeah, you can come, but the researchers really don't want you to come so maybe you should wait until the next meeting. And we were like, well, no, that's what you told us about the last meeting. It all has to hold on. And so act up started organizing another direct action. This one would be called Storm the NIH. The plan was for hundreds of protesters to flood Fauci's home turf and demand more say in how the federal government set its research priorities. The group wanted to give Fauci a chance to respond to their demands before the protest actually happened. So Mark Harrington arranged for a meeting, along with another act up member, Peter Staley. Peter had the bright idea of asking Fauci for a dinner. Fauci invited the activists to the home of his deputy director, Dr. Jim Hill. Dr. Jim Hill was a good host and cooked a good chicken, and poured a nice glass of wine. And at that time I was a chain smoker and he allowed in chain smoking, it was crazy. We're in Dr. Hill's living room. And Tony's like, so why are you guys here? What brings you down? Mark Harrington and Peter Staley said, you know, we still need more. We want more of the clinical trials. We want more representation. You're doing great. We love you. But we still are going to storm the NIH. And I said, oh my goodness, be careful. That might put us back a bit. Tony's like, well, why? We're talking. We've been talking for months. Peter's like, yeah, but you haven't given in to any of our demands. Since parallel track, you're not letting people with AIDS and their allies to go to those meetings. He says, no, it's nothing personal against you, but we've got to storm the NIH. We've got more than we've got to do. We were like, we'll call off the demo if you've given to all our demands. But for now, we're just going to go forward. Fauci did not give in to their demands. As much as his relationship with the activists had deepened, they were still on opposite sides of a line. Even though we became colleagues and, in some respects, friends, they would not let that relationship deter them from pushing even more for what they felt they needed. On the morning of May 21st, 1990, activists assembled at a metro station near the NIH. Then they marched to campus, acquired leafy collection of brick buildings and concrete office blocks. At one point, an air horn started blasting every 12 minutes, as a memorial to all the people dying of AIDS on a daily basis. This is an a cycle of your molecule. It's representing that there's treatments out there, that the NIH isn't testing. This is Geron's Frankie Ruta, in footage from the protest. And there's a lot of different treatments out there not studying and not studying them in all populations when they are studying. Frankie Ruta did not hesitate to call Fauci out by name. And that building down that way, Dr. Antony Fauci and a lot of other hot shot scientists have in conference deciding the research priorities for the National Institutes of Aluminum and Infectious Diseases. We're down here because we think we should be deciding the research priorities for the National Institute of Allergy and Infectious Diseases because these are the people who are living in these. These are the people who know what's going on because they're dealing with it every day. Those people don't. They're fascinated by this little virus and they don't give a fuck about the people who are living with it. Frankie Ruta was not the only one at the protest who took direct aim at Fauci. One guy carried a sign that said, "Dr. Fauci, you are killing us." Another said, "Antony Fauci, I piss on you." They had my head on a spike. It was really very, in some respects, poignant and moving, in some respects, almost entertaining. Storm the NIH encapsulated the inside-outside strategy that ACT UP had now perfected. While some members worked on Fauci and his colleagues from close range, others ratcheted up the pressure publicly. In some cases, it was the same activists who were doing both. Peter promised me, Peter Staley, that he was going to be so outlandish he was going to get arrested. When they finally did storm the NIH, he climbed up on the overhanging panopy of my building, and I saw that the police was starting to get a little rough, so they grabbed Peter and I saw it and I was afraid they were going to hurt him. So I ran down, I was looking at it out my window, and I ran down to the ground floor, and just as I got to the ground floor, Peter was in handcuffs being led away by the police, and Peter looked up and said, "With the big smile in his face," he said, "See, Tony, I told you I was going to get arrested, and the police looked at us like a vote of these guys crazy, here they are storming the building, and they look like they're good friends." One month after storm the NIH in June of 1990, Anthony Fauci gave a speech at the 6th International AIDS Conference in San Francisco. It is a distinct honor and a pleasure to participate in the closing ceremonies of the 6th International Congress on AIDS and to share with you my perspective on AIDS research. Fauci spent much of his a lot of time giving his perspective on what the new decade would mean for the AIDS epidemic. Then he turned his attention to the relationship between scientists and activists. Activists bring a very special insight into the way that we design our scientific approaches together we are a formidable force with a common goal. But Fauci wanted the activists in attendance to come away with a clear message. I don't agree with everything you're doing, but you need to understand that we are all together in this. The scientific community is not your enemy, the scientific community cares about you, the scientific community is devoted everything that they do to try and protect you and get your lives back to some form of normality with the proper drugs, and it was a real coming together of a realization that we were all in this together. This is the way we serve, but we must never lose sight of the fact that the people whom we serve are the HIV infected people throughout the world. Thank you. Basically, Fauci came up to us and he told us that he was giving in to all of our demands and he was telling the researchers that they had to do what we asked and he followed up on that. In the months after the conference, it was announced that people with AIDS would finally be included in the clinical trials group, positioning them to exert real influence on its research agenda. Fauci had made good on his word. So we got to see him at the height of his defensiveness and we got to see him change and that was a wonderful thing. And ever since then, people with AIDS and their allies and advocates have been part of the AIDS research clinical trials system and not just beating up on the outside, but actually helping to shape it from the inside. Harrington's happiness wasn't shared by every member of ACT UP. Sarah Schulman, for example, was unimpressed by how slowly Fauci had come around and what it had taken to change his mind. He was brought around by a combination of pressure that made him uncomfortable from people he did not understand, like poor people or women, and a kind of collegiality from a certain kind of man that he eventually was able to identify with. As Garan's Frankie Ruta told me, many people outside of treatment and data were starting to get antsy about how close some of their fellow activists were getting to the people in power. People started having arguments about whether or not to continue meeting with scientists there was a proposal for a moratorium on meetings for six months, and I remember very vividly being at the general meeting where that was discussed, where someone got up and said it's only for six months, it's not like it's the rest of your life. And someone else said it might actually be the rest of my life. Meanwhile, some members of ACT UP had started conceiving of the organization as being about more than just AIDS activism. They wanted it to be a vehicle for upending the entire American health care system, and tackling what they considered to be the broader systemic issues of which AIDS was just one component. The question arose whether or not ACT UP was a more general left-wing group or whether it was specifically an HIV organization, and that's, I think, where things started to get tense. Increasingly, treatment and data members felt like they were operating independently of their colleagues. Instead of going to demos, we were now going to scientific meetings and helping to design protocol. And so the old famous insight outside strategy where you negotiate but you also demonstrate. The balance became more going to science meetings and less to demonstrations and in retrospect that created tension. In the years since its founding, ACT UP had managed to get a staggering number of their demands met. They had won changes to the drug testing and approval process. They had secured a seat at the table for people with AIDS when it came to decision-making around research funding. They had secured compassionate use approval for drugs to treat AIDS-related blindness and numusis to pneumonia. Here again is Robert Vasquez-Pacheco. We changed the ways research was done in the United States and brought an element of compassion. I mean that the process became humanized. We got drugs into bodies. But despite their victories, everyone we talked to for this episode was quick to temper their excitement about what ACT UP had achieved by the end of the 1980s. For all their efforts, there was still no drug that could save people from dying of AIDS. We began to realize that this thing of hoping for a magic bullet that we would all be activists for two or three years and then the cure would come, the vaccine would come and we would all go back to our lives, wasn't going to happen. ACT for still things for a while, for some who took it and were able to take it and tolerate it. Some people were able to get access to drugs that prevented opportunistic infections or they were just lucky enough to have immune systems that declined more slowly. But a lot of people didn't and just the pace of the dying picked up. This was an epidemic that kept growing. So it wasn't as if it reached a plateau. We kept seeing more and more people getting sick. It was very hard to be so young and watch your friends suffer and die on a regular basis. AIDS is a terrible death. And to watch people in their 20s and 30s become demented and blind and covered in skin cancer, I mean it was horrible. The group never completely folded, but around 1991 a fallow period started during which dozens of patients, if not hundreds of ACT up members, burned out and quit. Robert Vasquez-Pacheco moved to Philadelphia and tried to focus on his own life. He still had faith that something eventually would work. But he also thought about all the people, like his boyfriend Jeff, who had already begun when that day arrived. And of course what struck me was, oh God, you know, they're going to find something and it's going to be too late for so many people, for so many people. On the next episode of Fiasco, the tide begins to turn as a new class of drugs shows promise against HIV. The fact that it happened in one patient, it tells us for the first time that it's actually possible. Fiasco is presented by Audible originals and prologue projects. The show is produced by Andrew Parsons, Sam Graham Felson, Madeline Kaplan, Ula Culpa, and me, Leon Nafok. Our researcher is Francis Carr, editorial support from Jessica Miller and Noor Waswas, archival research by Michelle Sullivan. This season's score is composed by Edith Mudge. Additional music by Nick Sylvester of God Mode, Joel St. Julian, and Dan English, Noah Hackett, and Joe Valley. Our theme song is by Spatial Relations. Our credit song this week is the place where he inserted the blade by Black Country New Road. Music licensing courtesy of Anthony Roman, audio mix by Erica Wong with additional support from Selena Urabe, our artwork is designed by Teddy Blanks at Chips NY. David Blum is the editor-in-chief of Audible originals. Mike Charzek is the vice president of Audible Studios. Zach Ross is head of acquisition and development for Audible. Thanks to Chris Roby, Susie Lichtenberg, and the team at Radio Lab, and Peter Yasi. Special thanks to David France, Bill Baulman, and Thomas Naglus for sharing with us the audio of Fauci's meeting with ACT UP. Thank you for listening, and see you back here next week for episode 7.