The AIDS Crisis: Episode 6 - Drugs into Bodies

Hey, this is Leon Napok. I'm the host of Fiasco, but you may also know me from the podcasts Slowburn, 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.

Everything I'm reading Everyone age 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 jeers.

Demonstrators outside marched in memory of those who died of AIDS and called for more research money.

We got them.

Jeff died on February eleventh, nineteen eighty six. I remember it was the middle of a snowstorm, this huge blizzard in New York, and Jeff died in asleep, and I woke up in bed and found him dead next to me.

Robert Vasquez Pacheco and his boyfriend Jeff lived together on the Upper West Side of Manhattan. Vasquet Pacheco was an artist. He was twenty nine when Jeff died. Jeff was thirty four.

You know, I shocked. I 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. I get cigarettes.

And so I walked out of the apartment and walked into this blizzard. And as I walk out, I see people on Columbus Avenue on skis well, you know, 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 nine one one 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 nineteen eighty one, before anyone knew what AIDS was or how it was spread. According to 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 trays 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 had 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 Capaci sarcoma, it was up to Vasquez Pacheco to keep him comfortable.

We did a bunch of things. I got Jeff to get into acupuncture. I introduced Jeff to marijuana because he was on chemo. So it was all 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, fast Cast Pacheco wasn't just devastated, he was also furious.

What I was left with was.

Equal parts sadness, this 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 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 were ignoring it.

So I was angry at everybody.

In his grief, fastcast Pacheko joined what he described to me as a conscient business raising 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 Aid's Coalition to Unleash Power, or act UP for short. They had started meeting in March of nineteen eighty seven 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

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 Navak from Audible Originals. In 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, fauci, you're killing us.

You just say let the drug out, then disasters can occur.

Drug sent about asis? What was the tance of 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 are still going to suffer and die.

When HIV V was first identified in nineteen eighty four, 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.

Development 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 stomp 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, chautaqi mushrooms, and tree SAP. Then, in nineteen eighty five, one pharmaceutical company started testing an AIDS drug that showed promise in earth early human trials. The drug

What we hope to do is to suppress the virus enough that we may attain every mission.

I was very excited about the hope of getting something that would help you 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 two hundred and sixty patients in a nationwide study of a drug known as AZT.

Very good when I came into the study, I feel very good now.

Whatever it is is working.

For three 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 nineteen eighty six, the FDA fast tracked the

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 in 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 claim 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 manufacture of profiteering. Direct actions like the Wall Street protest were at the core of actup's methodology. They were usually staged with a kind of theatre flourish, and they were almost always tied to a set of specific demands. Mark Harrington saw a flyer for ACKed UP

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 act UP meeting in the West Village, which was held every Monday at seven 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 Act Up, the group had already worked out a highly disciplined approach to staging protests. One of their strategies was to get arrested in 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. In March of nineteen eighty eight, Act Up organized an action on Wall Street to mark the group's

And we all sat down in an intersection in block traffic for at least an hour, chanting and waving condoms in the air.

And I have been ignoring us all these years, and the only way you get attention from them is to hit 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.

As fast as they could.

Take one group off the streets, another group sat down.

When it was over, one hundred and five age demonstrators took their curtain calls.

And police buses on.

The way to jail, and so I was instantly hooked.

While protests like the Wall Street Action began to give act UP a public profile, members working behind closed doors put just as much effort into something less spectacular, educating themselves and each other. Sarah Schulman again.

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.

Act up'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.

There were regular teachings that you could attend. Whatever it was that you wanted to find out about, you could 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 act UP called Treatment and Data.

It was a small group of people that was led by a pharmaceutical chemist named doctor iris Long, who had somewhat randomly come across an act UP meeting and became inspired by the issue and apply to 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 eighty AIDS treatments are being tested in about one hundred and fifty studies in the US, according to the FDA, and did 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 had 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 ten years, more than eight.

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 turned now to the man who oversees all AIDS treatment research for the federal government.

The government official running this institute during the late nineteen eighties was the same one who runs it today.

He is doctor Anthony Fauci, director of the National Institute of Allergy and Infectious Disease, a.

Division of the National 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 nineteen eighty six to give the NAH around three hundred million dollars 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 oppotunistic infections and tumb 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 act to AIDS drugs, even if they weren't yet proven to work. Many felt that

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 its INTR 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

The government had an official definition of AIDS that listed what symptoms you had to have in order to get an aid's 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 ever 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 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 a 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 well for 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 was never press shy, became the face of the federal government's efforts on AIDS. This meant answering charges that he and agency we're moving too slowly. Here's Fauci being interviewed on PBS in nineteen eighty six.

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 made sound to do the study in as scientifically a sound way as possible, so.

That Fauci tried to explain that there were good reasons the system was set up the way. It was really concerned 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 compromwise, we still don't have an agent that's safe and effectively 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 eighteen months to live.

The reality was that the drug approval process could take upwards of fifteen years, and so we said, you guys have to change that process.

People need medication.

Now now, not ten 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 nineteen eighty eight, they channeled their outrage into their biggest public action yet, and.

So ACTUP was trying to figure out what kind of national action we wanted to do to kind of heighten our message in 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 actup'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 eleventh, nineteen eighty eight, more than a thousand act UP members arrived at the FDA's campus in Rockville, Maryland. Many carried signs in the shape of tombstones decorated with phrases like azy T 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.

So marshals were the ones who were in charge of sort of crowd safety. You would be patrolling the lines to make sure that people were keeping calm, or like please do not go up into the cops face, you know, and scream at him.

There were about three hundred and fifty police officers on the scene. Basquez 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 marshalls 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

Vazquez 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. Act Up had gathered AIDS activists from around the country in a common cause, and they had made their demands literally front page news.

Angry demonstrators managed to close down the Food and Drug Administration Today, they accused the agency under President Reagan of wasting time in the war against ADS.

That sort of changed everything when they said, oh, wait a minute, you know, these fagots are pissed off and they're not playing around.

In June of nineteen eighty nine, about nine months after the protest in Rockville, the FDA approved two drugs to treat people with AIDS, one for numisistus pneumonia 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 fifty percent of gay men in New York City were infected with HIV.

This is Garan's Frankie Ruda, who joined Act Up in nineteen eighty eight at the age of seventeen.

I mean, just imagine if half the people you went to high school with were suddenly told that they were probably gonna die in the next three to seven years. Drugs and the bodies was a chance at living. It was pretty simple.

Nobody an act Up seemed to pay much attention to Frankie Ruda's age. She was outspoken and enthusiastic, and the fact that she was a teenager probably just made her a better activist.

I had two years of high school and a GD like you know, but I was I had very high reading skills and apparently an unbounded sense of confidence, so or at least determination. You know, I wasn't doing anything in a calculated way. Nobody was doing anything in a particularly calculated way. It was just this urgent, urgent, urgent need. And the only question ask of anybody is not like who are you or how educated you are, or like do you have money or do you have the right

Like Mark Harrington, Frankie Ruda 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 Ruda 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, you know, 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,

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 nineteen eighty nine, act up rallied around an 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.

Even just from the nine months that it was from the Sea's 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 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.

We rolled out the same demands with each one of them that we want this parallel track research into the operat news take infections and cancers, research to allow people of color, women, drug users, and children into AID 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 stockbrokers, they were theatrical people, and yet they studied the situation and came up with a research genda that was really very very well founded, an 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 aid's 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 AST, whose virus was controlled, but it was still very sick.

The patient had a condition that was making him go blind. A drug called gencyclovir 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, doctor Fauci, do you see what the government is doing. You're giving me a choice. I could either take AZT and not gan cyclovir and go blind, or I can take gan cyclovir and maintain my 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 Actup's demands, many activists continued to regard him with suspicion.

We're with treatment in data, with many, and we're going to facilitate this meeting as soon as doctor and m Fauci.

In the fall of nineteen eighty nine, Fauci arranged to attend an act UP meeting in New York to be.

Respectful of people who were talking, that they're not be cheering or hissing or booing. That we really tried 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 one hundred act UP people who were bristling within many respects, anger and being upset with how the government was acting.

Tony 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, doctor Fauci, I don't question you about where your moral commitment did 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 any body sticking up for me or protecting me. Let's hear what you have to say.

What 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 aggressive mood.

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.

To you, I agree with you completely.

I told you then, I'll tell you now. Things off 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.

Now, that's wrong, but you keep saying I'm wrong.

You see, this is.

What I mean.

You make a presumption on them.

Tell you why you're absolutely wrong.

You see, 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 range, and you get one shot at get something done.

If you do that, that's the name of the game.

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 remember 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, DC and like just getting up to the microphone and asking questions, you know, wearing my like five dollars miniskirt that I got at a street fair in some parking lot in Manhattan, you know, and like 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 as patients but as 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

The new found 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. You told us 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, doctor Jim Hill.

Doctor Jim Hill was a good host and cooked a good chicken and port 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 doctor Hill's living room and Tony's like, so, why are you guys here? What brings you down?

Mark Carrington 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, you know, be careful. That might put us back a bit.

Tony's like, well, why we're talking. We've been talking for months and 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 that we've got to do.

We were like, we'll call off the demo if you'd 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 twenty first, nineteen ninety, activists assembled at a metro station near the NIH. Then they marched to campus, a quiet, leafy collection of brick buildings and concrete office blocks.

People a night won't.

Be quiet, Oh my drugs treatment.

Or riot people.

At one point, an air horn started blasting every twelve minutes as a memorial to all the people dying of AIDS on a daily basis.

This isn't a syche of your molecule.

It's representing that there's treatments out there that the NIH isn't testing. They're not testing.

This is Garan's Frankie Ruda in footage from the protest, and there's a lot.

Of different treatments that they're not studying, and they're not studying them in all populations when they are studying them.

Frankie Ruda did not hesitate to call Fauci out by name.

And that building down that way.

Dr Anthony Fauci and a lot of other hot shot scientists are having conference deciding the research priorities for the National Institutes of Valerine and Infectice Diseases. We're down here because we think we should be deciding the research priorities for the National Institute of Allergy and in Texted Diseases, because these are the people who are literally the disease. These are the people who know what's going on because

With thee.

For dying for right.

Frankie Ruda was not the only one at the protest who took direct aim at Fauci. One guy carried a sign that said doctor Fauci you are killing us. Another said Anthony Fauci, I piss on you.

They had my head on a spike. It was it was really very you know, in some respects poignant and moving, in some respects almost entertaining.

Stormed 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.

Pete promised me Peter Staley that he was going to be so outland thish he was going to get arrested. And when 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 that, 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

Here they are.

Storming the building and they look like they're good friends.

One month after storm the nih In Gue of nineteen ninety, Anthony Fauci gave a speech at the sixth International AIDS Conference in San Francisco.

It is a.

Distinct honor and a pleasure to participate in the closing ceremonies of the sixth International Congress on AIDS and to share with you my perspective on AIDS research.

Fauci spent much of his allotted time giving his perspective on what the new decade would mean for the AIDS epidemic projection. 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. Fauci wanted the activists and 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 has 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 Garantz Frankie Ruda 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 healthcare 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, you know, going to demos, we were now going to scientific meetings and helping to design produc calls, and so the old famous inside outside strategy where you negotiate but you also demonstrate. The balance became more going to science meetings and less to demonstrations, and in retrospect, dot 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 numicistis 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 nineteen eighties, 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 like a magic bullet, that you know, 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.

Happenzt forestalled 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 were 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 our regular basis aids is a terrible death. And to watch people in their twenties and thirties become demented and blind and covered in skin cancer, I mean, it was horrible.

The group never completely folded, but around nineteen ninety one a fallo period started, during which dozens, if not hundreds, of act UP members burned out and quit. Robert Basquez 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 would already be gone 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.

Takes a few months.

But on Bones here for Strong, we tell all.

Our school friends a sign all the cast in the playground.

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, Ulla Kulpa, and me Leon Nafock. Our researcher is Francis Carr. Editorial support from Jessica Miller and Norah Waswaz, Archival research by Michelle Sullivan. This season's score is composed by Edith Mudge. Additional music by Nick Sylvester of God Mode, Joel Saint, Julian and Dan English, Noah Hackt, and Joe Valley. Our