Speaker 1: Hey, this is Leon Napok. I'm the host of Fiasco,
Speaker 1: but you may also know me from the podcasts Slowburn,
Speaker 1: Think Twice, Michael Jackson, and Backfired the Vaping Wars. I'm
Speaker 1: excited to be sharing with you the next season of Backfired,
Speaker 1: titled Attention Deficit, which is now available exclusively on Audible.
Speaker 1: Backfired is a podcast about the business of unintended consequences.
Speaker 1: In the first season, my co host Ril Pardess and
Speaker 1: I dove deep into the world of vaping and how
Speaker 1: the well intentioned quest for a safer cigarette went awry.
Speaker 1: Now we're tackling ADHD and how the push to destigmatize
Speaker 1: this hard to define childhood diagnosis has led to an
Speaker 1: explosion of stimulant use in kids as well as adults.
Speaker 1: It's a story about the promise of psychiatry to fix
Speaker 1: our brains and the power of the pharmaceutical industry to
Speaker 1: shape how we and our doctors think about what's wrong
Speaker 1: with us. To hear both seasons of Backfired, go to
Speaker 1: audible dot com slash Backfired and start a free trial
Speaker 1: that's audible dot com slash Backfired. Fiasco is intended from
Speaker 1: a audiences for a list of books articles and documentaries
Speaker 1: we used in our research. Follow the link in the
Speaker 1: show notes previously on Fiasco.
Speaker 2: Everything I'm reading Everyone age dies.
Speaker 3: We had no other resources but ourselves.
Speaker 1: There was growing sentiment in the White House that Reagan
Speaker 1: should deliver a major address to the nation about AIDS.
Speaker 1: The President gave his first major speech on the subject tonight,
Speaker 1: one that drew both cheers and jeers.
Speaker 4: Demonstrators outside marched in memory of those who died of
Speaker 4: AIDS and called for more research money.
Speaker 5: We got them.
Speaker 6: Jeff died on February eleventh, nineteen eighty six. I remember
Speaker 6: it was the middle of a snowstorm, this huge blizzard
Speaker 6: in New York, and Jeff died in asleep, and I
Speaker 6: woke up in bed and found him dead next to me.
Speaker 1: Robert Vasquez Pacheco and his boyfriend Jeff lived together on
Speaker 1: the Upper West Side of Manhattan. Vasquet Pacheco was an artist.
Speaker 1: He was twenty nine when Jeff died. Jeff was thirty four.
Speaker 2: You know, I shocked. I was crying, and.
Speaker 6: I had quit smoking about a year before, and I
Speaker 6: was sitting on the bed.
Speaker 2: I was actually clutching his foot.
Speaker 6: I was sobbing, and I was holding his foot and
Speaker 6: I thought, you know what, I have to go get
Speaker 6: some cigarettes.
Speaker 2: I'm not going to get through this. I get cigarettes.
Speaker 6: And so I walked out of the apartment and walked
Speaker 6: into this blizzard. And as I walk out, I see
Speaker 6: people on Columbus Avenue on skis well, you know, going
Speaker 6: down Columbus Avenue, and I thought, this is too fucking surreal,
Speaker 6: and you know, picked up cigarettes and then came back
Speaker 6: up and then I called nine one one and my
Speaker 6: friends and everything else.
Speaker 1: Vasquez Pacheco had been taking care of Jeff for more
Speaker 1: than four years at this point. Jeff had gotten sick
Speaker 1: back in nineteen eighty one, before anyone knew what AIDS
Speaker 1: was or how it was spread. According to Vasquez Pacheco,
Speaker 1: even hospital staff treated Jeff like a pariah.
Speaker 6: So he would be in the hospital, they'd put him
Speaker 6: in an isolation room, and then the orderlies would leave
Speaker 6: trays the food for him on the floor outside of
Speaker 6: the room. And the fact that they couldn't even walk
Speaker 6: in to give him the food, but they left it
Speaker 6: out there without even notifying him that the meal had
Speaker 6: you know, it was horrible. So I saw the way
Speaker 6: he was treated by people that were supposed to be
Speaker 6: helping him.
Speaker 1: As Jeff underwent chemotherapy for his Capaci sarcoma, it was
Speaker 1: up to Vasquez Pacheco to keep him comfortable.
Speaker 6: We did a bunch of things. I got Jeff to
Speaker 6: get into acupuncture. I introduced Jeff to marijuana because he
Speaker 6: was on chemo. So it was all sort of a
Speaker 6: struggle to see how we could do this and how
Speaker 6: we could get through it and slowly start watching other
Speaker 6: people dealing with it.
Speaker 1: After Jeff died, fast Cast Pacheco wasn't just devastated, he
Speaker 1: was also furious.
Speaker 2: What I was left with was.
Speaker 6: Equal parts sadness, this profound sadness of this loss, and
Speaker 6: at the same time I was filled with this rage
Speaker 6: because you know, this upheaval in this community that was
Speaker 6: experienced so much loss, and it was so apparent, it
Speaker 6: was visible that what was happening, and people weren't doing anything,
Speaker 6: and people weren't saying anything, and people were ignoring it.
Speaker 2: So I was angry at everybody.
Speaker 1: In his grief, fastcast Pacheko joined what he described to
Speaker 1: me as a conscient business raising group for gay men.
Speaker 1: Their meetings took place at the Lesbian and Gay Community
Speaker 1: Center in the West Village. One night, Vasquez Pacheco and
Speaker 1: a friend were leaving the center after a meeting. As
Speaker 1: they made their way out of the building, they had
Speaker 1: to cut through a large room on the ground floor
Speaker 1: that was full of people.
Speaker 6: I said, look at the amount of cute guys in
Speaker 6: this room. What is this organization?
Speaker 2: And that's when we went, Oh, my god, it's an
Speaker 2: AIDS organization.
Speaker 1: The group called themselves the Aid's Coalition to Unleash Power,
Speaker 1: or act UP for short. They had started meeting in
Speaker 1: March of nineteen eighty seven after the activist and writer
Speaker 1: Larry Kramer gave an impassioned speech at the center calling
Speaker 1: for the establishment of a radical new AIDS organization. Ever since,
Speaker 1: the group had been getting together at the Lesbian and
Speaker 1: Gay Community Center every Monday night. There was no official hierarchy. Instead,
Speaker 1: the hundreds of people who showed up tried their best
Speaker 1: to think and act as one. When Robert Vasquez Pacheco
Speaker 1: passed through that act UP meeting, he saw a room
Speaker 1: of people who seemed to be doing something about AIDS, and,
Speaker 1: with Jeff's death still fresh in his mind, he decided
Speaker 1: to join them.
Speaker 2: I was angry, I was pissed. My lover had just died.
Speaker 6: I was pissed, and I wanted someone to answer for it.
Speaker 6: And I found a group of like minded men who
Speaker 6: were just as pissed.
Speaker 5: As I was.
Speaker 1: I'm Leon Navak from Audible Originals. In prologue projects This
Speaker 1: is Fiasco.
Speaker 7: Angry demonstrators managed to close down the Food and Drug
Speaker 7: Administration today As.
Speaker 8: Fast as they could take one group off the streets,
Speaker 8: another group sat down.
Speaker 5: They had signs, you know, fauci, you're killing us.
Speaker 9: You just say let the drug out, then disasters can occur.
Speaker 10: Drug sent about asis? What was the tance of living?
Speaker 6: People need medication now, ten years from now they'll be dead.
Speaker 1: In this episode, how act Up confronted the medical establishment
Speaker 1: and demanded an urgent response to the AIDS crisis. The
Speaker 1: problem that act UP was created to solve was that
Speaker 1: six long years into the epidemic, there was still pretty
Speaker 1: much nothing that doctors could do for people who had
Speaker 1: AIDS or HIV.
Speaker 3: At the beginning, people with AIDS had no treatments, no
Speaker 3: matter who they were.
Speaker 1: This is Sarah Schulman, a member of act UP and
Speaker 1: the author of Let the Record Show, A History of
Speaker 1: the organization.
Speaker 3: You could be Rock Hudson with access to the White
Speaker 3: House and endless money, and you're still going to suffer
Speaker 3: and die. Or you could be a homeless person using
Speaker 3: drugs and you are still going to suffer and die.
Speaker 1: When HIV V was first identified in nineteen eighty four,
Speaker 1: many believed that scientists would develop a vaccine fairly quickly,
Speaker 1: the same way they had for other deadly viruses.
Speaker 4: The government says it hopes to develop a vaccine to
Speaker 4: prevent AIDS.
Speaker 7: Development of a vaccine is at least two years away.
Speaker 1: But HIV proved to be uniquely complicated, as scientists would
Speaker 1: later show the virus had the highest mutation rate of
Speaker 1: any organism on record, which made an easy vaccine impossible.
Speaker 11: Doctors still have no way of fighting AIDS. That means
Speaker 11: all they can do is hope they'll eventually find something
Speaker 11: or some combination of things that will stomp the disease
Speaker 11: in its tracks.
Speaker 1: In the absence of a vaccine, scientists had to think
Speaker 1: of other ways to attack the virus. In the meantime,
Speaker 1: people with AIDS resorted to home remedies like capsules of
Speaker 1: powdered garlic, chautaqi mushrooms, and tree SAP. Then, in nineteen
Speaker 1: eighty five, one pharmaceutical company started testing an AIDS drug
Speaker 1: that showed promise in earth early human trials. The drug
Speaker 1: was called AZT. It was originally developed back in the
Speaker 1: nineteen sixties as a cancer treatment, and like many chemotherapy drugs,
Speaker 1: it acted broadly on the body, destroying a variety of cells,
Speaker 1: not just the ones it was meant to target. The
Speaker 1: drug had been shelved by its manufacturer because it turned
Speaker 1: out to be far too toxic for patients, but in
Speaker 1: people with AIDS, AZT appeared to slow the progress of
Speaker 1: the disease.
Speaker 11: What we hope to do is to suppress the virus
Speaker 11: enough that we may attain every mission.
Speaker 12: I was very excited about the hope of getting something
Speaker 12: that would help you maintain myself a little bit longer.
Speaker 1: AZT was the first sign of hope that AIDS could
Speaker 1: be thwarted through medicine, and while no one was calling
Speaker 1: it a cure, people allowed themselves to be optimistic.
Speaker 12: Marty is one of two hundred and sixty patients in
Speaker 12: a nationwide study of a drug known as AZT.
Speaker 13: Very good when I came into the study, I feel
Speaker 13: very good now.
Speaker 10: Whatever it is is working.
Speaker 1: For three but the side effects of AZT were brutal.
Speaker 1: People participating in trials of the drug complained of fevers, migraine, headaches,
Speaker 1: abdominal pain, and nausea. Almost half showed depleted bone marrow cells,
Speaker 1: a majority developed anemia, and some required multiple blood transfusions. Still,
Speaker 1: the early results on AZT looked promising enough that the
Speaker 1: company producing it, Burrows Welcome, ended its clinical trials early,
Speaker 1: and in nineteen eighty six, the FDA fast tracked the
Speaker 1: drug's release to the public. The cost of AZT was
Speaker 1: set at around ten thousand dollars a year, which at
Speaker 1: the time made it the most expensive drug ever brought
Speaker 1: to market.
Speaker 11: The drug has serious side effects and it is expensive,
Speaker 11: but in announcing its release today, the Department of Health
Speaker 11: and Human Services called it an important step.
Speaker 1: It so happened that AZT was approved right as act
Speaker 1: UP was starting to take shape. From the beginning, members
Speaker 1: of the organization were clear that, no matter how promising
Speaker 1: the drug looked, they did not believe it would be enough.
Speaker 1: Sarah Schulman again.
Speaker 3: The general tenor was that AZT was not the solution.
Speaker 3: I think people thought that in certain quantities in combination
Speaker 3: with other treatments, it could be beneficial for a certain
Speaker 3: period of time, but AZT alone and especially at these
Speaker 3: high doses, was not going to do what it claim
Speaker 3: to do.
Speaker 1: At actup's first ever public protest, the group gathered on
Speaker 1: Wall Street, where they condemned the exorbitant cost of AZT
Speaker 1: and accused its manufacture of profiteering. Direct actions like the
Speaker 1: Wall Street protest were at the core of actup's methodology.
Speaker 1: They were usually staged with a kind of theatre flourish,
Speaker 1: and they were almost always tied to a set of
Speaker 1: specific demands. Mark Harrington saw a flyer for ACKed UP
Speaker 1: about a year after that first protest. It was nineteen
Speaker 1: eighty eight and Harrington was working part time at a
Speaker 1: film archive in Chelsea.
Speaker 14: I was young and curious and fascinated and worried and
Speaker 14: terrified and wanted to learn everything I could, And so
Speaker 14: one Monday night I went to the act UP meeting
Speaker 14: in the West Village, which was held every Monday at
Speaker 14: seven o'clock, and I was just immediately overwhelmed by the beautiful,
Speaker 14: powerful energy and solidarity and love in the room from
Speaker 14: several generations of gay men, many lesbians, a lot of
Speaker 14: straight women and very few of any straight men.
Speaker 1: By the time Harrington joined Act Up, the group had
Speaker 1: already worked out a highly disciplined approach to staging protests.
Speaker 1: One of their strategies was to get arrested in predetermined waves,
Speaker 1: so that once the police rounded up one group of activists,
Speaker 1: another would fill the gap, and then another one after that.
Speaker 1: It meant the action would last longer and hopefully attract
Speaker 1: more attention. In March of nineteen eighty eight, Act Up
Speaker 1: organized an action on Wall Street to mark the group's
Speaker 1: first anniversary. Harrington joined Wave three as a trainee.
Speaker 14: And we all sat down in an intersection in block
Speaker 14: traffic for at least an hour, chanting and waving condoms
Speaker 14: in the air.
Speaker 12: And I have been ignoring us all these years, and
Speaker 12: the only way you get attention from them is to
Speaker 12: hit them where it hurts, and in New York City,
Speaker 12: of course, traffic hurts.
Speaker 14: I got arrested along with my fellow trainees, and we
Speaker 14: were off to the races.
Speaker 5: As fast as they could.
Speaker 3: Take one group off the streets, another group sat down.
Speaker 13: When it was over, one hundred and five age demonstrators
Speaker 13: took their curtain calls.
Speaker 2: And police buses on.
Speaker 14: The way to jail, and so I was instantly hooked.
Speaker 1: While protests like the Wall Street Action began to give
Speaker 1: act UP a public profile, members working behind closed doors
Speaker 1: put just as much effort into something less spectacular, educating
Speaker 1: themselves and each other. Sarah Schulman again.
Speaker 3: When you would come into the meeting room, the first
Speaker 3: thing you did was pass along the table and it
Speaker 3: would be filled with handouts about all kinds of things,
Speaker 3: about new medical investigations, about policies, about housing legislation, communications
Speaker 3: from incarcerated people with AIDS, issues about mothers, I mean,
Speaker 3: all kinds of information, and you would pick up every flyer.
Speaker 1: Act up's philosophy was that people with AIDS and their
Speaker 1: allies needed an intimate understanding of what AIDS was, what
Speaker 1: was being done about it, and what wasn't.
Speaker 3: There were regular teachings that you could attend. Whatever it
Speaker 3: was that you wanted to find out about, you could
Speaker 3: go to a teaching and the people who were experts
Speaker 3: would give you information to read and they would explain
Speaker 3: the basics.
Speaker 1: Mark Harrington, a self proclaimed science nerd, was drawn to
Speaker 1: a study group organized by a subcommittee of act UP
Speaker 1: called Treatment and Data.
Speaker 14: It was a small group of people that was led
Speaker 14: by a pharmaceutical chemist named doctor iris Long, who had
Speaker 14: somewhat randomly come across an act UP meeting and became
Speaker 14: inspired by the issue and apply to her pharmaceutical knowledge
Speaker 14: to helping us understand pharmacology and drug trials.
Speaker 1: With guidance from iris Long, members of Treatment and Data
Speaker 1: started learning about the drug development process and formulating new
Speaker 1: questions about which drugs were being tested and how they were,
Speaker 1: essentially becoming amateur scientists.
Speaker 11: More than eighty AIDS treatments are being tested in about
Speaker 11: one hundred and fifty studies in the US, according to
Speaker 11: the FDA, and did several of these drugs that AIDS
Speaker 11: activists want Immediate access to.
Speaker 1: The process for testing and approving potential new therapies for
Speaker 1: AIDS ran through two parts of the federal bureaucracy. The
Speaker 1: drug approval process was handled by the Food and Drug Administration,
Speaker 1: where they reviewed drugs after they had gone through test
Speaker 1: tube and animal studies. If the FDA gave the green light,
Speaker 1: a drug could move into clinical trials in humans.
Speaker 11: After minimal study animal studies. The normal FDA approval process
Speaker 11: has three phases. Phase three averages four years. The whole
Speaker 11: process can take from two to ten years, more than eight.
Speaker 1: So that was the FDA. The other major component of
Speaker 1: the drug development bureaucracy was the National Institutes of Health
Speaker 1: the NIH, a sprawling agency made up of more than
Speaker 1: two dozen federally funded research hubs. The part of NIH
Speaker 1: responsible for developing new AIDS treatments was the National Institute
Speaker 1: for Allergy and Infectious Disease.
Speaker 4: We turned now to the man who oversees all AIDS
Speaker 4: treatment research for the federal government.
Speaker 1: The government official running this institute during the late nineteen
Speaker 1: eighties was the same one who runs it today.
Speaker 4: He is doctor Anthony Fauci, director of the National Institute
Speaker 4: of Allergy and Infectious Disease, a.
Speaker 1: Division of the National Mark Harrington, through his work with
Speaker 1: act UP, would come to know Fauci personally.
Speaker 14: Tony took the HELM as the AIDS crisis was deepening,
Speaker 14: and right as Congress began turning on the spigots of
Speaker 14: money for AIDS research at the NIH.
Speaker 1: It was under pressure from Fauci that the White House
Speaker 1: agreed in nineteen eighty six to give the NAH around
Speaker 1: three hundred million dollars in AIDS funding. With that money,
Speaker 1: Fauci was able to initiate research on several new drugs,
Speaker 1: including AZT.
Speaker 5: At that point, I set up drug discovery units. I
Speaker 5: began to build the clinical trial network.
Speaker 1: This is Fauci in an interview we did with him
Speaker 1: this winter.
Speaker 5: Subsequent to that first initial infusion of money that we got.
Speaker 5: The big challenge was going from a disease in which
Speaker 5: you had no treatments at all except treating oppotunistic infections
Speaker 5: and tumb is to being able to directly treat the virus.
Speaker 1: It's important to remember that at this time there was
Speaker 1: no such thing as an emergency use authorization for a
Speaker 1: drug the way there is now. So for a desperate population,
Speaker 1: early clinical trials like the ones Fauci was overseeing were
Speaker 1: the only way to get act to AIDS drugs, even
Speaker 1: if they weren't yet proven to work. Many felt that
Speaker 1: taking them was still better than doing nothing. But as
Speaker 1: Mark Harrington and his peers saw firsthand, getting into the
Speaker 1: trials was complicated, and some people were shut out of
Speaker 1: them entirely.
Speaker 14: We would sometimes go to a hospital where a doctor
Speaker 14: was running a clinical trial and demand to speak to
Speaker 14: him and try to find out why nobody was enrolling
Speaker 14: in his clinical trial because nobody knew about it and
Speaker 14: its INTR criteria excluded people with a lot of AIDS
Speaker 14: defining conditions.
Speaker 1: To understand why certain people were excluded from drug trials,
Speaker 1: it helps to remember that AIDS is an umbrella term
Speaker 1: for a variety of conditions that stem from the immune
Speaker 1: system being destroyed by HIV. Different people experience different AIDS
Speaker 1: defining conditions. Some of them you've heard about, like CAPESI sarcoma,
Speaker 1: and numicistas pneumonia, but there are dozens of others, and
Speaker 1: as Sarah Schulman told me, some AIDS defining conditions that
Speaker 1: occurred primarily in women weren't included for years in the
Speaker 1: CDC's official definition of the disease.
Speaker 3: The government had an official definition of AIDS that listed
Speaker 3: what symptoms you had to have in order to get
Speaker 3: an aid's diagnosis, and women were getting symptoms that were
Speaker 3: not on the list, so that women were getting AIDS
Speaker 3: and dying and never qualifying for benefits and not getting
Speaker 3: access to experimental treatments. If women couldn't get into the trials,
Speaker 3: the medication could ever be tested on them.
Speaker 1: In practice, drug trials were mostly populated by white men
Speaker 1: and few, if any women or people of color. On
Speaker 1: top of that, participating in a clinical trial often required
Speaker 1: patients to give up the medications they were already using
Speaker 1: to treat their symptoms.
Speaker 3: In some trials, people were asked to give up a
Speaker 3: medication that kept them from going so that they could
Speaker 3: get a medication that would keep them from getting demented.
Speaker 3: Like human beings, should not be put in a position
Speaker 3: to have to make decisions like that so that science
Speaker 3: can have clean data.
Speaker 1: In a vacuum. It makes sense to want to test
Speaker 1: a drug under conditions that allow you to isolate its effect.
Speaker 1: Any extra variable or interference from other treatments can make
Speaker 1: it harder to achieve that ideal.
Speaker 5: Generally, the strict protocols that had been serving the biomedical
Speaker 5: and clinical research community well for decades of having highly
Speaker 5: controlled clinical trials, which now retrospectively, we see that it
Speaker 5: was not ideally suited to the very special circumstances of HIV.
Speaker 1: Fauci, who was never press shy, became the face of
Speaker 1: the federal government's efforts on AIDS. This meant answering charges
Speaker 1: that he and agency we're moving too slowly. Here's Fauci
Speaker 1: being interviewed on PBS in nineteen eighty six.
Speaker 4: Do you ever have any feelings of remorse of regret
Speaker 4: that the system works the way it does.
Speaker 9: It certainly is very difficult to see so many young
Speaker 9: men suffer and die when we don't have a treatment.
Speaker 9: That is the most powerful impetus for us. As contradictory
Speaker 9: as it made sound to do the study in as
Speaker 9: scientifically a sound way as possible, so.
Speaker 1: That Fauci tried to explain that there were good reasons
Speaker 1: the system was set up the way. It was really
Speaker 1: concerned that if scientists started cutting corners and rushing drugs
Speaker 1: to market that hadn't been rigorously tested, it would only
Speaker 1: make things worse.
Speaker 9: Because trying at this point to say, well, we're really
Speaker 9: concerned about the patients who have the disease, now which
Speaker 9: we are in fact quite concerned, let's modify the scientific
Speaker 9: integrity of the study. The real shame and tragedy will
Speaker 9: be five years down the pike if because of that compromwise,
Speaker 9: we still don't have an agent that's safe and effectively
Speaker 9: because we compromised our method of testing it, that would
Speaker 9: be the real tragedy.
Speaker 1: Robert Vasquez Pacheco saw a different tragedy. To him, it
Speaker 1: appeared the system just wasn't set up to deal with
Speaker 1: a new disease that gave most people just eighteen months
Speaker 1: to live.
Speaker 6: The reality was that the drug approval process could take
Speaker 6: upwards of fifteen years, and so we said, you guys
Speaker 6: have to change that process.
Speaker 2: People need medication.
Speaker 6: Now now, not ten years from now.
Speaker 2: They'll be dead.
Speaker 1: Members of act UP had come to believe there were
Speaker 1: fundamental problems with the drug development process. In the fall
Speaker 1: of nineteen eighty eight, they channeled their outrage into their
Speaker 1: biggest public action yet, and.
Speaker 14: So ACTUP was trying to figure out what kind of
Speaker 14: national action we wanted to do to kind of heighten
Speaker 14: our message in whether it should be like, say, at
Speaker 14: the White House or at the mall or somewhere else.
Speaker 11: Now.
Speaker 3: Historically, progressive movements had always chosen symbolic objects like the
Speaker 3: White House or the Capitol, but in this case, one
Speaker 3: of actup's leaders realized that we should be picking actual obstacles,
Speaker 3: not symbolic ones, and propose that the action be in Rockville, Maryland,
Speaker 3: at the FDA.
Speaker 1: On October eleventh, nineteen eighty eight, more than a thousand
Speaker 1: act UP members arrived at the FDA's campus in Rockville, Maryland.
Speaker 1: Many carried signs in the shape of tombstones decorated with
Speaker 1: phrases like azy T Isn't enough and killed by the FDA.
Speaker 15: Thank you all for coming.
Speaker 12: You are witnessing the largest demonstration ever in front of
Speaker 12: the Food and Drug Administration.
Speaker 1: Some protesters came wearing white lab coats and gloves covered
Speaker 1: in red paint to symbolize that the FDA had blood
Speaker 1: on its hands. The national media sent reporters to Rockville
Speaker 1: to witness act up in action.
Speaker 8: Ronald Reagan was hoisted in effigy this morning as hundreds
Speaker 8: of AIDS activists descended on the Food and Drug Administration,
Speaker 8: determined to shut it down the charge that while people
Speaker 8: are dying, FDA delays the demand that the FDA speed
Speaker 8: up approval of drugs that show any promise against AIDS.
Speaker 1: Robert Vasquez Pacheco was at the protest serving as a marshal,
Speaker 1: a peacekeeper essentially.
Speaker 6: So marshals were the ones who were in charge of
Speaker 6: sort of crowd safety. You would be patrolling the lines
Speaker 6: to make sure that people were keeping calm, or like
Speaker 6: please do not go up into the cops face, you know,
Speaker 6: and scream at him.
Speaker 1: There were about three hundred and fifty police officers on
Speaker 1: the scene. Basquez Pacheco was wary.
Speaker 2: Well.
Speaker 6: I had told people I do not get arrested at demonstrations.
Speaker 6: I said, I am a Puerto Rican. We disappear into
Speaker 6: the prison system, you know, so I am not going
Speaker 6: to get arrested. Someone got a little carried away with
Speaker 6: themselves and broke a door, a glass door, trying to
Speaker 6: get in, and immediately the cops descended on it. Of course,
Speaker 6: myself and some marshalls showed up, you know as well
Speaker 6: to like, okay, pull people back, you know, keep people safe,
Speaker 6: pull people back, and the cops, you know, just started
Speaker 6: arresting people. And I remember what cop just looked at
Speaker 6: looked at me, said take that one because I had
Speaker 6: a walkie talkie.
Speaker 1: Vazquez Pacheco and all the others who were arrested in
Speaker 1: Rockville were taken by bus to the Montgomery County Police Academy,
Speaker 1: where the police had set up their gym as a
Speaker 1: temporary detention center. Eventually they let everyone go. The protest
Speaker 1: at the FDA was a success. Act Up had gathered
Speaker 1: AIDS activists from around the country in a common cause,
Speaker 1: and they had made their demands literally front page news.
Speaker 7: Angry demonstrators managed to close down the Food and Drug
Speaker 7: Administration Today, they accused the agency under President Reagan of
Speaker 7: wasting time in the war against ADS.
Speaker 6: That sort of changed everything when they said, oh, wait
Speaker 6: a minute, you know, these fagots are pissed off and
Speaker 6: they're not playing around.
Speaker 1: In June of nineteen eighty nine, about nine months after
Speaker 1: the protest in Rockville, the FDA approved two drugs to
Speaker 1: treat people with AIDS, one for numisistus pneumonia and one
Speaker 1: for cytomegalovirus retinitis, a condition that left many AIDS patients blind.
Speaker 1: Both were drugs developed for other purposes that act UP
Speaker 1: had been demanding access to. According to Mark Harrington, the
Speaker 1: fact that they were finally approved was a sign that
Speaker 1: the government was starting to listen.
Speaker 14: The FDA began to think about how to do things
Speaker 14: differently because they realized that the traditional way of doing
Speaker 14: studies was too slow for a pandemic, and the traditional
Speaker 14: way of doing very restrictive enrollment criteria was not only
Speaker 14: too restrictive for a pandemic like AIDS, but was actually
Speaker 14: too restrictive period.
Speaker 1: It was around this time that AIDS activists began to
Speaker 1: rally around a new slogan, Drugs into Bodies. It reflected
Speaker 1: a mix of hope and desperation, suggesting that if only
Speaker 1: scientists could try enough different drugs, one of them would
Speaker 1: surely turn out to work. In the meantime, anything was
Speaker 1: better than nothing.
Speaker 10: At the time, roughly fifty percent of gay men in
Speaker 10: New York City were infected with HIV.
Speaker 1: This is Garan's Frankie Ruda, who joined Act Up in
Speaker 1: nineteen eighty eight at the age of seventeen.
Speaker 10: I mean, just imagine if half the people you went
Speaker 10: to high school with were suddenly told that they were
Speaker 10: probably gonna die in the next three to seven years.
Speaker 10: Drugs and the bodies was a chance at living. It
Speaker 10: was pretty simple.
Speaker 1: Nobody an act Up seemed to pay much attention to
Speaker 1: Frankie Ruda's age. She was outspoken and enthusiastic, and the
Speaker 1: fact that she was a teenager probably just made her
Speaker 1: a better activist.
Speaker 10: I had two years of high school and a GD
Speaker 10: like you know, but I was I had very high
Speaker 10: reading skills and apparently an unbounded sense of confidence, so
Speaker 10: or at least determination. You know, I wasn't doing anything
Speaker 10: in a calculated way. Nobody was doing anything in a
Speaker 10: particularly calculated way. It was just this urgent, urgent, urgent need.
Speaker 10: And the only question ask of anybody is not like
Speaker 10: who are you or how educated you are, or like
Speaker 10: do you have money or do you have the right
Speaker 10: to do this? The only question act up asked of
Speaker 10: anybody is can you help? And if you could help,
Speaker 10: then people were really happy to work with you on anything.
Speaker 1: Like Mark Harrington, Frankie Ruda was drawn to the Treatment
Speaker 1: and Data Subcommittee. There, she learned about drugs that seemed
Speaker 1: like they might be worth testing on AIDS patients, including
Speaker 1: some that were approved in other countries but weren't available
Speaker 1: in the United States. At one point, Frankie Ruda started
Speaker 1: working with a group that was importing such drugs and
Speaker 1: setting up underground trials in New York.
Speaker 10: I was part of the team that decided which medications
Speaker 10: we would import in this kind of legal gray area.
Speaker 10: So the idea there was that, you know, we would
Speaker 10: do sort of citizen science research, read the medical literature,
Speaker 10: talk to doctors, talk to manufacturers, find out everything that
Speaker 10: was known about how a medication and a pathogen might
Speaker 10: respond to each other. There was a category we called
Speaker 10: what the hell drugs, where we knew that they were
Speaker 10: extremely safe, we had no idea if they really worked,
Speaker 10: and we were like, well, can hurt might help? What
Speaker 10: the hell you know?
Speaker 1: But identifying potential drugs was only part of the equation.
Speaker 1: Making them accessible to people who couldn't wait around for
Speaker 1: them to be approved was just as important, and during
Speaker 1: the summer of nineteen eighty nine, act up rallied around
Speaker 1: an idea known as parallel track drug trials. The pitch
Speaker 1: was that scientists should conduct their clinical trials as rigorously
Speaker 1: as they wanted, but also simultaneously, they should make experimental
Speaker 1: drugs more widely available to people who had the disease.
Speaker 1: To Harrington and his colleagues, parallel track seemed like a
Speaker 1: no brainer.
Speaker 14: Even just from the nine months that it was from
Speaker 14: the Sea's control of the FDA. Our understanding and knowledge
Speaker 14: about science had grown exponentially in that period of time,
Speaker 14: and our demands were much more precise and much more doable.
Speaker 1: To get parallel track in front of the scientific community,
Speaker 1: Harrington and the others from act up crashed a medical
Speaker 1: conference in Montreal presented their proposal to a group of
Speaker 1: scientists that included Anthony Fauci. In addition to parallel track,
Speaker 1: act UP sketched out an entire research agenda for which
Speaker 1: drugs to test and in what order.
Speaker 14: We rolled out the same demands with each one of
Speaker 14: them that we want this parallel track research into the
Speaker 14: operat news take infections and cancers, research to allow people
Speaker 14: of color, women, drug users, and children into AID clinical trials,
Speaker 14: and we want it now.
Speaker 1: Fauci at least was impressed.
Speaker 5: They trained themselves literally to become scientists without I mean,
Speaker 5: they were lawyers, they were stockbrokers, they were theatrical people,
Speaker 5: and yet they studied the situation and came up with
Speaker 5: a research genda that was really very very well founded,
Speaker 5: an extraordinary and I read it and it was like, wow,
Speaker 5: we got some really serious partners here.
Speaker 1: A few weeks later, Fauci was in San Francisco where
Speaker 1: he met an aid's patient who pressed him further on
Speaker 1: the need for parallel track.
Speaker 5: It was articulated to me by a person who was
Speaker 5: lying in bed, who was on AST, whose virus was controlled,
Speaker 5: but it was still very sick.
Speaker 1: The patient had a condition that was making him go blind.
Speaker 1: A drug called gencyclovir could prevent him from losing his sight,
Speaker 1: but he wasn't allowed to take it at the same
Speaker 1: time as AZT if he wanted to stay in the trial.
Speaker 5: And I remember when I went to the person's room
Speaker 5: down in the Castro in San Francisco, and I sat
Speaker 5: down by his bedside with his partner, and he looked
Speaker 5: at me and he said, doctor Fauci, do you see
Speaker 5: what the government is doing. You're giving me a choice.
Speaker 5: I could either take AZT and not gan cyclovir and
Speaker 5: go blind, or I can take gan cyclovir and maintain
Speaker 5: my vision and die. What kind of choice is that?
Speaker 5: And it became eminently clear to me that we just
Speaker 5: were not getting it.
Speaker 1: The next day, Fauci publicly endorsed Parallel Track during a
Speaker 1: town hall meeting.
Speaker 5: That's when I decided that I would try and with them,
Speaker 5: help to change the system. It wasn't easy for me, because,
Speaker 5: on the one hand, there were still those among the
Speaker 5: activists who still didn't think we were doing things well
Speaker 5: enough and quickly enough. And there were many among the
Speaker 5: scientific community who thought I was caving in to the activists.
Speaker 5: But I knew deep down that I was doing the
Speaker 5: right thing.
Speaker 1: Even as Fauci grew more sympathetic to Actup's demands, many
Speaker 1: activists continued to regard him with suspicion.
Speaker 13: We're with treatment in data, with many, and we're going
Speaker 13: to facilitate this meeting as soon as doctor and m Fauci.
Speaker 1: In the fall of nineteen eighty nine, Fauci arranged to
Speaker 1: attend an act UP meeting in New York to be.
Speaker 13: Respectful of people who were talking, that they're not be
Speaker 13: cheering or hissing or booing. That we really tried to
Speaker 13: use this meeting as let's call it a working confrontation.
Speaker 5: I went down to the Gay and Lesbian Community Center
Speaker 5: down in Greenwich Village literally by myself, I think I
Speaker 5: had one of my staff was with me, and got
Speaker 5: in the room where there were about one hundred act
Speaker 5: UP people who were bristling within many respects, anger and
Speaker 5: being upset with how the government was acting.
Speaker 14: Tony came up to a meeting of Treatment and Data
Speaker 14: and submitted to basically three hours of tough questions from us,
Speaker 14: including accusations of genocide.
Speaker 13: Hey, doctor Fauci, I don't question you about where your
Speaker 13: moral commitment did I'm talking about the practicality of how
Speaker 13: we get things done.
Speaker 6: You are in a spot which people say, what the
Speaker 6: hell is he doing?
Speaker 5: And I said, okay, I'm here, I'm with you, I'm
Speaker 5: sitting down among you. I don't have any body sticking
Speaker 5: up for me or protecting me. Let's hear what you
Speaker 5: have to say.
Speaker 10: What what we're.
Speaker 15: Saying is that people, including yourself, in some levels, must
Speaker 15: have one their conscience. These deaths why there is a
Speaker 15: more aggressive movement to make sure that the next opportunistic
Speaker 15: infections aren't dealt with more effectively and aggressive mood.
Speaker 1: The meeting was quite heavy on the science. Much of
Speaker 1: the discussion revolved around which drugs should be tested first
Speaker 1: and how Fauci could more effectively use his political muscle.
Speaker 1: Fauci agreed with some of the criticism and conceded that
Speaker 1: the medical establishment could do better.
Speaker 16: To you, I agree with you completely.
Speaker 5: I told you then, I'll tell you now. Things off better.
Speaker 16: We could send you a list if you don't already
Speaker 16: have it, of all of the activities.
Speaker 5: That are going on, but it isn't enough. We obviously still.
Speaker 10: Need to do more.
Speaker 1: At other points, Fauci aggressively corrected what act UP members
Speaker 1: were saying to him.
Speaker 5: Now, that's wrong, but you keep saying I'm wrong.
Speaker 7: You see, this is.
Speaker 2: What I mean.
Speaker 5: You make a presumption on them.
Speaker 16: Tell you why you're absolutely wrong.
Speaker 1: You see, in those moments, Fauci could come off as
Speaker 1: kind of patronizing.
Speaker 16: I think that you may be naive and understanding how
Speaker 16: you can get things done.
Speaker 6: In Washington.
Speaker 16: You don't get many shots of going out like the
Speaker 16: lone range, and you get one shot at get something done.
Speaker 14: If you do that, that's the name of the game.
Speaker 1: Despite the tensions that flared up at that first meeting
Speaker 1: in New York, over the coming months, Fauci and some
Speaker 1: of his colleagues started hosting members of the Treatment and
Speaker 1: Data Group in Washington. Both sides remember the experience as
Speaker 1: something of a culture clash.
Speaker 5: We learned a lot from them, and they learned a
Speaker 5: lot from us. But it wasn't always a very smooth road.
Speaker 10: I remember going to meetings in Washington, DC and like
Speaker 10: just getting up to the microphone and asking questions, you know,
Speaker 10: wearing my like five dollars miniskirt that I got at
Speaker 10: a street fair in some parking lot in Manhattan, you know,
Speaker 10: and like they just looked at us, like, who are
Speaker 10: you people? It felt like we were from a totally
Speaker 10: different world.
Speaker 1: In many ways, they were. For years now, the activists
Speaker 1: have been operating in the epicenter of the epidemic. Fauci
Speaker 1: and his colleagues, on the other hand, worked in bucolic
Speaker 1: suburban communities, far away from the mass death that surrounded
Speaker 1: act UP members in New York. By confronting the scientists directly,
Speaker 1: act UP was forcing them to perceive the crisis more
Speaker 1: clearly and vividly.
Speaker 14: Once the researchers began to know living people with AIDS,
Speaker 14: it changed people like Tony Fauci when they began to
Speaker 14: meet with us not just as patients but as activists
Speaker 14: and antagonists and people who wanted to get them to
Speaker 14: do the right thing. And then they would lie awake
Speaker 14: at night and toss and turn and think about it
Speaker 14: and realize that in some cases we were right. And
Speaker 14: meanwhile we would be tossing and turning back in New
Speaker 14: York after meeting with them, and we would sometimes learn
Speaker 14: things from them that we hadn't thought of before, And
Speaker 14: we began going from having an argument to having a conversation,
Speaker 14: and from having a conversation to having a partnership.
Speaker 1: The new found alliance between Fauci and the Treatment and
Speaker 1: Data Group did not mean that act UP was done
Speaker 1: protesting him. There was one issue in particular that the
Speaker 1: activists were focused on.
Speaker 14: We started telling Tony that we wanted him to get
Speaker 14: us invited to the meeting of the NIH funded clinical
Speaker 14: trials network, which was called the AIDS Clinical Trial Group.
Speaker 1: The AIDS Clinical Trial Group at NIH determined which treatments
Speaker 1: would be studied, and when activists insisted that their new
Speaker 1: partnership with Fauci was little more than lip service until
Speaker 1: people with AIDS were part of the group and included
Speaker 1: in making those decisions.
Speaker 14: And then he said, yeah, you can come, but the
Speaker 14: researchers really don't want you to come, so maybe you
Speaker 14: should wait until the next meeting. And we were like, well, no,
Speaker 14: that's what you told us about the last meeting. You
Speaker 14: told us to hold on.
Speaker 1: And so act UP started organizing another direct action. This
Speaker 1: one would be called storm the NIH. The plan was
Speaker 1: for hundreds of protesters to flood Fauci's home turf and
Speaker 1: demand more say in how the federal government set its
Speaker 1: research priorities. The group wanted to give Fauci a chance
Speaker 1: to respond to their demands before the protest actually happened,
Speaker 1: so Mark Harrington arranged for a meeting along with another
Speaker 1: act UP member, Peter Staley.
Speaker 14: Peter had the bright idea of asking Fauci for a dinner.
Speaker 1: Fauci invited the activists to the home of his deputy director,
Speaker 1: doctor Jim Hill.
Speaker 14: Doctor Jim Hill was a good host and cooked a
Speaker 14: good chicken and port a nice glass of wine. And
Speaker 14: at that time I was a chain smoker and he
Speaker 14: allowed in chain smoking. It was crazy. We're in doctor
Speaker 14: Hill's living room and Tony's like, so, why are you
Speaker 14: guys here? What brings you down?
Speaker 5: Mark Carrington and Peter Staley said, you know, we still
Speaker 5: need more. We want more of the clinical trials, we
Speaker 5: want more representation. You're doing great, we love you, but
Speaker 5: we still are going to storm the NIH And I said,
Speaker 5: oh my goodness, you know, be careful. That might put
Speaker 5: us back a bit.
Speaker 14: Tony's like, well, why we're talking. We've been talking for
Speaker 14: months and Peter's like, yeah, but you haven't given in
Speaker 14: to any of our demands since Parallel Track. You're not
Speaker 14: letting people with AIDS and their allies to go to
Speaker 14: those meetings.
Speaker 5: He says, no, it's nothing personal against you, but we've
Speaker 5: got to storm the NIH. We've got more that we've
Speaker 5: got to do.
Speaker 14: We were like, we'll call off the demo if you'd
Speaker 14: given to all our demands, but for now, we're just
Speaker 14: going to go forward.
Speaker 1: Fauci did not give in to their demands. As much
Speaker 1: as his relationship with the activists had deepened, they were
Speaker 1: still on opposite sides of a line.
Speaker 5: Even though we became colleagues and in some respects friends,
Speaker 5: They would not let that relationship deter them from pushing
Speaker 5: even more for what they felt they needed.
Speaker 1: On the morning of May twenty first, nineteen ninety, activists
Speaker 1: assembled at a metro station near the NIH. Then they
Speaker 1: marched to campus, a quiet, leafy collection of brick buildings
Speaker 1: and concrete office blocks.
Speaker 2: People a night won't.
Speaker 9: Be quiet, Oh my drugs treatment.
Speaker 2: Or riot people.
Speaker 1: At one point, an air horn started blasting every twelve
Speaker 1: minutes as a memorial to all the people dying of
Speaker 1: AIDS on a daily basis.
Speaker 10: This isn't a syche of your molecule.
Speaker 17: It's representing that there's treatments out there that the NIH
Speaker 17: isn't testing. They're not testing.
Speaker 1: This is Garan's Frankie Ruda in footage from the protest,
Speaker 1: and there's a lot.
Speaker 17: Of different treatments that they're not studying, and they're not
Speaker 17: studying them in all populations when they are studying them.
Speaker 1: Frankie Ruda did not hesitate to call Fauci out by name.
Speaker 10: And that building down that way.
Speaker 17: Dr Anthony Fauci and a lot of other hot shot
Speaker 17: scientists are having conference deciding the research priorities for the
Speaker 17: National Institutes of Valerine and Infectice Diseases. We're down here
Speaker 17: because we think we should be deciding the research priorities
Speaker 17: for the National Institute of Allergy and in Texted Diseases,
Speaker 17: because these are the people who are literally the disease.
Speaker 17: These are the people who know what's going on because
Speaker 17: they're dealing with it every day. Those people don't they're
Speaker 17: fascinated by this little buyers and they don't give a
Speaker 17: fuck about the people who are living.
Speaker 10: With thee.
Speaker 17: For dying for right.
Speaker 1: Frankie Ruda was not the only one at the protest
Speaker 1: who took direct aim at Fauci. One guy carried a
Speaker 1: sign that said doctor Fauci you are killing us. Another
Speaker 1: said Anthony Fauci, I piss on you.
Speaker 5: They had my head on a spike. It was it
Speaker 5: was really very you know, in some respects poignant and moving,
Speaker 5: in some respects almost entertaining.
Speaker 1: Stormed the NIH encapsulated the inside outside strategy that act
Speaker 1: up had now perfected. While some members worked on Fauci
Speaker 1: and his colleagues from close range, others ratcheted up the
Speaker 1: pressure publicly. In some cases it was the same activists
Speaker 1: who were doing both.
Speaker 5: Pete promised me Peter Staley that he was going to
Speaker 5: be so outland thish he was going to get arrested.
Speaker 5: And when when they finally did storm the NIH, he
Speaker 5: climbed up on the overhanging panopy of my building and
Speaker 5: I saw that the police was starting to get a
Speaker 5: little rough, so they grabbed Peter. And I saw that,
Speaker 5: and I was afraid they were going to hurt him,
Speaker 5: so I ran down. I was looking at it out
Speaker 5: my window, and I ran down to the ground floor,
Speaker 5: and just as I got to the ground floor, Peter
Speaker 5: was in handcuffs being led away by the police. And
Speaker 5: Peter looked up and said, with a big smile in
Speaker 5: his face, he said, see Tony, I told you I
Speaker 5: was going to get arrested, and the police looked at
Speaker 5: us like, of both of these guys crazy.
Speaker 2: Here they are.
Speaker 5: Storming the building and they look like they're good friends.
Speaker 1: One month after storm the nih In Gue of nineteen ninety,
Speaker 1: Anthony Fauci gave a speech at the sixth International AIDS
Speaker 1: Conference in San Francisco.
Speaker 10: It is a.
Speaker 16: Distinct honor and a pleasure to participate in the closing
Speaker 16: ceremonies of the sixth International Congress on AIDS and to
Speaker 16: share with you my perspective on AIDS research.
Speaker 1: Fauci spent much of his allotted time giving his perspective
Speaker 1: on what the new decade would mean for the AIDS
Speaker 1: epidemic projection. Then he turned his attention to the relationship
Speaker 1: between scientists and activists. Activists bring a very special insight
Speaker 1: into the way that we design our scientific approaches. Together,
Speaker 1: we are a formidable force with a common goal. Fauci
Speaker 1: wanted the activists and attendance to come away with a
Speaker 1: clear message.
Speaker 5: I don't agree with everything you're doing, but you need
Speaker 5: to understand that we are all together in this. The
Speaker 5: scientific community is not your enemy. The scientific community cares
Speaker 5: about you. The scientific community has devoted everything that they
Speaker 5: do to try and protect you and get your lives
Speaker 5: back to some form of normality with the proper drugs.
Speaker 5: And it was a real coming together of a realization
Speaker 5: that we were all in this together.
Speaker 16: This is the way we serve, but we must never
Speaker 16: lose sight of the fact that the people whom we
Speaker 16: serve are the HIV infected people throughout the world.
Speaker 1: Thank you.
Speaker 14: Basically, Fauci came up to us and he told us
Speaker 14: that he was giving in to all of our demands,
Speaker 14: and he was telling the researchers that they had to
Speaker 14: do what we asked, and he followed up on that.
Speaker 1: In the months after the conference, it was announced that
Speaker 1: people with AIDS would finally be included in the clinical
Speaker 1: trials group, positioning them to exert real influence on its
Speaker 1: research agenda. Fauci had made good on his word.
Speaker 14: So we got to see him at the height of
Speaker 14: his defensiveness and we got to see him change and
Speaker 14: that was a wonderful thing. And ever since then, people
Speaker 14: with AIDS and their allies and advocates have been part
Speaker 14: of the AIDS research clinical trials system and not just
Speaker 14: beating up on the outside, but actually helping to shape
Speaker 14: it from the inside.
Speaker 1: Harrington's happiness wasn't shared by every member of act UP.
Speaker 1: Sarah Schulman, for example, was unimpressed by how slowly Fauci
Speaker 1: had come around and what it had taken to change
Speaker 1: his mind.
Speaker 3: He was brought around by a combination of pressure that
Speaker 3: made him uncomfortable from people he did not understand, like
Speaker 3: poor people or women, and a kind of collegiality from
Speaker 3: a certain kind of man that he eventually was able
Speaker 3: to identify with.
Speaker 1: As Garantz Frankie Ruda told me, many people outside of
Speaker 1: Treatment and Data were starting to get antsy about how
Speaker 1: close some of their fellow activists were getting to the
Speaker 1: people in power.
Speaker 10: People started having arguments about whether or not to continue
Speaker 10: meeting with scientists. There was a proposal for a moratorium
Speaker 10: on meetings for six months, and I remember very vividly
Speaker 10: being at the general meeting where that was discussed, where
Speaker 10: someone got up and said, it's only for six months,
Speaker 10: it's not like it's the rest of your life, and
Speaker 10: someone else said, it might actually be the rest of
Speaker 10: my life.
Speaker 1: Meanwhile, some members of act UP had started conceiving of
Speaker 1: the organization as being about more than just AIDS activism.
Speaker 1: They wanted it to be a vehicle for upending the
Speaker 1: entire American healthcare system and tackling what they considered to
Speaker 1: be the broader systemic issues, of which AIDS was just
Speaker 1: one component.
Speaker 10: The question arose whether or not act UP was a
Speaker 10: more general left wing group or whether it was specifically
Speaker 10: an HIV organization. And that's I think where things started
Speaker 10: to get tense.
Speaker 1: Increasingly, treatment and data members felt like they were operating
Speaker 1: independently of their colleagues.
Speaker 14: Instead of, you know, going to demos, we were now
Speaker 14: going to scientific meetings and helping to design produc calls,
Speaker 14: and so the old famous inside outside strategy where you
Speaker 14: negotiate but you also demonstrate. The balance became more going
Speaker 14: to science meetings and less to demonstrations, and in retrospect,
Speaker 14: dot created tension.
Speaker 1: In the years since its founding, act UP had managed
Speaker 1: to get a staggering number of their demands met. They
Speaker 1: had won changes to the drug testing and approval process.
Speaker 1: They had secured a seat at the table for people
Speaker 1: with AIDS when it came to decision making around research funding.
Speaker 1: They had secured compassionate use approval for drugs to treat
Speaker 1: AIDS related blindness and numicistis pneumonia. Here again is Robert
Speaker 1: Vasquez Pacheco.
Speaker 6: We changed the ways research was done in the United
Speaker 6: States and brought an element of compassion. I mean that
Speaker 6: the process became humanized. We got drugs into bodies.
Speaker 1: But despite their victories, everyone we talked to for this
Speaker 1: episode was quick to temper their excitement about what act
Speaker 1: UP had achieved. By the end of the nineteen eighties,
Speaker 1: for all their efforts, there was still no drug that
Speaker 1: could save people from dying of AIDS.
Speaker 14: We began to realize that this thing of hoping for
Speaker 14: like a magic bullet, that you know, we would all
Speaker 14: be activists for two or three years, and then the
Speaker 14: cure would come, the vaccine would come, and we would
Speaker 14: all go back to our lives wasn't going to.
Speaker 10: Happenzt forestalled things for a while for some who took
Speaker 10: it and were able to take it and tolerate it.
Speaker 10: Some people were able to get access to drugs that
Speaker 10: prevented opportunistic infections, or they were just were lucky enough
Speaker 10: to have immune systems that declined more slowly. But a
Speaker 10: lot of people didn't, and just the pace of the
Speaker 10: dying picked up.
Speaker 6: This was an epidemic that kept growing, so it wasn't
Speaker 6: as if it reached a plateau. We kept seeing more
Speaker 6: and more people getting sick.
Speaker 3: It was very hard to be so young and watch
Speaker 3: your friends suffer and die on our regular basis aids
Speaker 3: is a terrible death. And to watch people in their
Speaker 3: twenties and thirties become demented and blind and covered in
Speaker 3: skin cancer, I mean, it was horrible.
Speaker 1: The group never completely folded, but around nineteen ninety one
Speaker 1: a fallo period started, during which dozens, if not hundreds,
Speaker 1: of act UP members burned out and quit. Robert Basquez
Speaker 1: Pacheco moved to Philadelphia and tried to focus on his
Speaker 1: own life. He still had faith that something eventually would work,
Speaker 1: but he also thought about all the people, like his
Speaker 1: boyfriend Jeff, who would already be gone when that day arrived.
Speaker 6: And of course what struck me was, oh, God, you
Speaker 6: know they're going to find something, and it's going to
Speaker 6: be too late for so many people, for so many people.
Speaker 10: Takes a few months.
Speaker 2: But on Bones here for Strong, we tell all.
Speaker 14: Our school friends a sign all the cast in the playground.
Speaker 1: On the next episode of Fiasco, the Tide begins to
Speaker 1: turn as a new class of drugs shows promise against HIV.
Speaker 6: The fact that it happened in one patient it tells
Speaker 6: us for the first time that it's actually possible.
Speaker 1: Fiasco is presented by Audible Originals and Prologue Projects. The
Speaker 1: show is produced by Andrew Parsons, Sam Graham Felson, Madeline Kaplan,
Speaker 1: Ulla Kulpa, and me Leon Nafock. Our researcher is Francis Carr.
Speaker 1: Editorial support from Jessica Miller and Norah Waswaz, Archival research
Speaker 1: by Michelle Sullivan. This season's score is composed by Edith Mudge.
Speaker 1: Additional music by Nick Sylvester of God Mode, Joel Saint,
Speaker 1: Julian and Dan English, Noah Hackt, and Joe Valley. Our
Speaker 1: theme song is by Spatial Relations. Our credit song this
Speaker 1: week is the Place Where He Inserted the Blade by
Speaker 1: Black Country New Road Music licensing courtesy of Anthony Roman.
Speaker 1: Audio mixed by Erica Wong with additional support from Selina Urabe.
Speaker 1: Our artwork is designed by Teddy Blanks at Chips and Y.
Speaker 1: David Blum is the editor in chief of Audible Originals.
Speaker 1: Mike Charzik is the vice president of Audible Studios. Zach
Speaker 1: Ross is head of acquisition and development for Audible. Thanks
Speaker 1: to Chris Roby, Susie Lichtenberg, and the team at Radio
Speaker 1: Lab and Peter Yassi. Special thanks to David France, Bill
Speaker 1: Balman and Thomas Knauglis for sharing with us the audio
Speaker 1: of Fauci's meeting with act UP. Thank you for listening,
Speaker 1: and see you back here next week for Episode seven.