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Speaker 1: Hey, this is Leon Napok. I'm the host of Fiasco,

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Speaker 1: but you may also know me from the podcasts Slowburn,

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Speaker 1: Think Twice, Michael Jackson, and Backfired the Vaping Wars. I'm

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Speaker 1: excited to be sharing with you the next season of Backfired,

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Speaker 1: titled Attention Deficit, which is now available exclusively on Audible.

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Speaker 1: Backfired is a podcast about the business of unintended consequences.

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Speaker 1: In the first season, my co host Ril Pardess and

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Speaker 1: I dove deep into the world of vaping and how

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Speaker 1: the well intentioned quest for a safer cigarette went awry.

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Speaker 1: Now we're tackling ADHD and how the push to destigmatize

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Speaker 1: this hard to define childhood diagnosis has led to an

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Speaker 1: explosion of stimulant use in kids as well as adults.

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Speaker 1: It's a story about the promise of psychiatry to fix

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Speaker 1: our brains and the power of the pharmaceutical industry to

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Speaker 1: shape how we and our doctors think about what's wrong

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Speaker 1: with us. To hear both seasons of Backfired, go to

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Speaker 1: audible dot com slash Backfired and start a free trial

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Speaker 1: that's audible dot com slash Backfired. Fiasco is intended from

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Speaker 1: a audiences for a list of books articles and documentaries

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Speaker 1: we used in our research. Follow the link in the

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Speaker 1: show notes previously on Fiasco.

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Speaker 2: Everything I'm reading Everyone age dies.

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Speaker 3: We had no other resources but ourselves.

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Speaker 1: There was growing sentiment in the White House that Reagan

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Speaker 1: should deliver a major address to the nation about AIDS.

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Speaker 1: The President gave his first major speech on the subject tonight,

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Speaker 1: one that drew both cheers and jeers.

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Speaker 4: Demonstrators outside marched in memory of those who died of

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Speaker 4: AIDS and called for more research money.

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Speaker 5: We got them.

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Speaker 6: Jeff died on February eleventh, nineteen eighty six. I remember

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Speaker 6: it was the middle of a snowstorm, this huge blizzard

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Speaker 6: in New York, and Jeff died in asleep, and I

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Speaker 6: woke up in bed and found him dead next to me.

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Speaker 1: Robert Vasquez Pacheco and his boyfriend Jeff lived together on

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Speaker 1: the Upper West Side of Manhattan. Vasquet Pacheco was an artist.

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Speaker 1: He was twenty nine when Jeff died. Jeff was thirty four.

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Speaker 2: You know, I shocked. I was crying, and.

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Speaker 6: I had quit smoking about a year before, and I

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Speaker 6: was sitting on the bed.

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Speaker 2: I was actually clutching his foot.

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Speaker 6: I was sobbing, and I was holding his foot and

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Speaker 6: I thought, you know what, I have to go get

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Speaker 6: some cigarettes.

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Speaker 2: I'm not going to get through this. I get cigarettes.

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Speaker 6: And so I walked out of the apartment and walked

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Speaker 6: into this blizzard. And as I walk out, I see

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Speaker 6: people on Columbus Avenue on skis well, you know, going

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Speaker 6: down Columbus Avenue, and I thought, this is too fucking surreal,

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Speaker 6: and you know, picked up cigarettes and then came back

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Speaker 6: up and then I called nine one one and my

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Speaker 6: friends and everything else.

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Speaker 1: Vasquez Pacheco had been taking care of Jeff for more

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Speaker 1: than four years at this point. Jeff had gotten sick

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Speaker 1: back in nineteen eighty one, before anyone knew what AIDS

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Speaker 1: was or how it was spread. According to Vasquez Pacheco,

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Speaker 1: even hospital staff treated Jeff like a pariah.

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Speaker 6: So he would be in the hospital, they'd put him

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Speaker 6: in an isolation room, and then the orderlies would leave

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Speaker 6: trays the food for him on the floor outside of

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Speaker 6: the room. And the fact that they couldn't even walk

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Speaker 6: in to give him the food, but they left it

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Speaker 6: out there without even notifying him that the meal had

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Speaker 6: you know, it was horrible. So I saw the way

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Speaker 6: he was treated by people that were supposed to be

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Speaker 6: helping him.

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Speaker 1: As Jeff underwent chemotherapy for his Capaci sarcoma, it was

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Speaker 1: up to Vasquez Pacheco to keep him comfortable.

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Speaker 6: We did a bunch of things. I got Jeff to

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Speaker 6: get into acupuncture. I introduced Jeff to marijuana because he

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Speaker 6: was on chemo. So it was all sort of a

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Speaker 6: struggle to see how we could do this and how

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Speaker 6: we could get through it and slowly start watching other

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Speaker 6: people dealing with it.

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Speaker 1: After Jeff died, fast Cast Pacheco wasn't just devastated, he

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Speaker 1: was also furious.

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Speaker 2: What I was left with was.

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Speaker 6: Equal parts sadness, this profound sadness of this loss, and

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Speaker 6: at the same time I was filled with this rage

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Speaker 6: because you know, this upheaval in this community that was

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Speaker 6: experienced so much loss, and it was so apparent, it

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Speaker 6: was visible that what was happening, and people weren't doing anything,

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Speaker 6: and people weren't saying anything, and people were ignoring it.

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Speaker 2: So I was angry at everybody.

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Speaker 1: In his grief, fastcast Pacheko joined what he described to

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Speaker 1: me as a conscient business raising group for gay men.

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Speaker 1: Their meetings took place at the Lesbian and Gay Community

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Speaker 1: Center in the West Village. One night, Vasquez Pacheco and

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Speaker 1: a friend were leaving the center after a meeting. As

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Speaker 1: they made their way out of the building, they had

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Speaker 1: to cut through a large room on the ground floor

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Speaker 1: that was full of people.

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Speaker 6: I said, look at the amount of cute guys in

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Speaker 6: this room. What is this organization?

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Speaker 2: And that's when we went, Oh, my god, it's an

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Speaker 2: AIDS organization.

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Speaker 1: The group called themselves the Aid's Coalition to Unleash Power,

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Speaker 1: or act UP for short. They had started meeting in

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Speaker 1: March of nineteen eighty seven after the activist and writer

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Speaker 1: Larry Kramer gave an impassioned speech at the center calling

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Speaker 1: for the establishment of a radical new AIDS organization. Ever since,

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Speaker 1: the group had been getting together at the Lesbian and

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Speaker 1: Gay Community Center every Monday night. There was no official hierarchy. Instead,

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Speaker 1: the hundreds of people who showed up tried their best

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Speaker 1: to think and act as one. When Robert Vasquez Pacheco

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Speaker 1: passed through that act UP meeting, he saw a room

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Speaker 1: of people who seemed to be doing something about AIDS, and,

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Speaker 1: with Jeff's death still fresh in his mind, he decided

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Speaker 1: to join them.

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Speaker 2: I was angry, I was pissed. My lover had just died.

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Speaker 6: I was pissed, and I wanted someone to answer for it.

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Speaker 6: And I found a group of like minded men who

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Speaker 6: were just as pissed.

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Speaker 5: As I was.

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Speaker 1: I'm Leon Navak from Audible Originals. In prologue projects This

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Speaker 1: is Fiasco.

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Speaker 7: Angry demonstrators managed to close down the Food and Drug

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Speaker 7: Administration today As.

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Speaker 8: Fast as they could take one group off the streets,

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Speaker 8: another group sat down.

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Speaker 5: They had signs, you know, fauci, you're killing us.

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Speaker 9: You just say let the drug out, then disasters can occur.

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Speaker 10: Drug sent about asis? What was the tance of living?

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Speaker 6: People need medication now, ten years from now they'll be dead.

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Speaker 1: In this episode, how act Up confronted the medical establishment

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Speaker 1: and demanded an urgent response to the AIDS crisis. The

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Speaker 1: problem that act UP was created to solve was that

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Speaker 1: six long years into the epidemic, there was still pretty

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Speaker 1: much nothing that doctors could do for people who had

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Speaker 1: AIDS or HIV.

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Speaker 3: At the beginning, people with AIDS had no treatments, no

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Speaker 3: matter who they were.

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Speaker 1: This is Sarah Schulman, a member of act UP and

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Speaker 1: the author of Let the Record Show, A History of

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Speaker 1: the organization.

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Speaker 3: You could be Rock Hudson with access to the White

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Speaker 3: House and endless money, and you're still going to suffer

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Speaker 3: and die. Or you could be a homeless person using

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Speaker 3: drugs and you are still going to suffer and die.

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Speaker 1: When HIV V was first identified in nineteen eighty four,

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Speaker 1: many believed that scientists would develop a vaccine fairly quickly,

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Speaker 1: the same way they had for other deadly viruses.

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Speaker 4: The government says it hopes to develop a vaccine to

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Speaker 4: prevent AIDS.

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Speaker 7: Development of a vaccine is at least two years away.

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Speaker 1: But HIV proved to be uniquely complicated, as scientists would

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Speaker 1: later show the virus had the highest mutation rate of

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Speaker 1: any organism on record, which made an easy vaccine impossible.

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Speaker 11: Doctors still have no way of fighting AIDS. That means

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Speaker 11: all they can do is hope they'll eventually find something

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Speaker 11: or some combination of things that will stomp the disease

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Speaker 11: in its tracks.

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Speaker 1: In the absence of a vaccine, scientists had to think

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Speaker 1: of other ways to attack the virus. In the meantime,

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Speaker 1: people with AIDS resorted to home remedies like capsules of

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Speaker 1: powdered garlic, chautaqi mushrooms, and tree SAP. Then, in nineteen

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Speaker 1: eighty five, one pharmaceutical company started testing an AIDS drug

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Speaker 1: that showed promise in earth early human trials. The drug

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Speaker 1: was called AZT. It was originally developed back in the

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Speaker 1: nineteen sixties as a cancer treatment, and like many chemotherapy drugs,

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Speaker 1: it acted broadly on the body, destroying a variety of cells,

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Speaker 1: not just the ones it was meant to target. The

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Speaker 1: drug had been shelved by its manufacturer because it turned

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Speaker 1: out to be far too toxic for patients, but in

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Speaker 1: people with AIDS, AZT appeared to slow the progress of

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Speaker 1: the disease.

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Speaker 11: What we hope to do is to suppress the virus

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Speaker 11: enough that we may attain every mission.

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Speaker 12: I was very excited about the hope of getting something

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Speaker 12: that would help you maintain myself a little bit longer.

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Speaker 1: AZT was the first sign of hope that AIDS could

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Speaker 1: be thwarted through medicine, and while no one was calling

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Speaker 1: it a cure, people allowed themselves to be optimistic.

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Speaker 12: Marty is one of two hundred and sixty patients in

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Speaker 12: a nationwide study of a drug known as AZT.

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Speaker 13: Very good when I came into the study, I feel

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Speaker 13: very good now.

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Speaker 10: Whatever it is is working.

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Speaker 1: For three but the side effects of AZT were brutal.

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Speaker 1: People participating in trials of the drug complained of fevers, migraine, headaches,

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Speaker 1: abdominal pain, and nausea. Almost half showed depleted bone marrow cells,

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Speaker 1: a majority developed anemia, and some required multiple blood transfusions. Still,

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Speaker 1: the early results on AZT looked promising enough that the

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Speaker 1: company producing it, Burrows Welcome, ended its clinical trials early,

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Speaker 1: and in nineteen eighty six, the FDA fast tracked the

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Speaker 1: drug's release to the public. The cost of AZT was

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Speaker 1: set at around ten thousand dollars a year, which at

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Speaker 1: the time made it the most expensive drug ever brought

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Speaker 1: to market.

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Speaker 11: The drug has serious side effects and it is expensive,

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Speaker 11: but in announcing its release today, the Department of Health

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Speaker 11: and Human Services called it an important step.

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Speaker 1: It so happened that AZT was approved right as act

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Speaker 1: UP was starting to take shape. From the beginning, members

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Speaker 1: of the organization were clear that, no matter how promising

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Speaker 1: the drug looked, they did not believe it would be enough.

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Speaker 1: Sarah Schulman again.

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Speaker 3: The general tenor was that AZT was not the solution.

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Speaker 3: I think people thought that in certain quantities in combination

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Speaker 3: with other treatments, it could be beneficial for a certain

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Speaker 3: period of time, but AZT alone and especially at these

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Speaker 3: high doses, was not going to do what it claim

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Speaker 3: to do.

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Speaker 1: At actup's first ever public protest, the group gathered on

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Speaker 1: Wall Street, where they condemned the exorbitant cost of AZT

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Speaker 1: and accused its manufacture of profiteering. Direct actions like the

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Speaker 1: Wall Street protest were at the core of actup's methodology.

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Speaker 1: They were usually staged with a kind of theatre flourish,

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Speaker 1: and they were almost always tied to a set of

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Speaker 1: specific demands. Mark Harrington saw a flyer for ACKed UP

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Speaker 1: about a year after that first protest. It was nineteen

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Speaker 1: eighty eight and Harrington was working part time at a

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Speaker 1: film archive in Chelsea.

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Speaker 14: I was young and curious and fascinated and worried and

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Speaker 14: terrified and wanted to learn everything I could, And so

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Speaker 14: one Monday night I went to the act UP meeting

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Speaker 14: in the West Village, which was held every Monday at

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Speaker 14: seven o'clock, and I was just immediately overwhelmed by the beautiful,

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Speaker 14: powerful energy and solidarity and love in the room from

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Speaker 14: several generations of gay men, many lesbians, a lot of

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Speaker 14: straight women and very few of any straight men.

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Speaker 1: By the time Harrington joined Act Up, the group had

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Speaker 1: already worked out a highly disciplined approach to staging protests.

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Speaker 1: One of their strategies was to get arrested in predetermined waves,

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Speaker 1: so that once the police rounded up one group of activists,

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Speaker 1: another would fill the gap, and then another one after that.

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Speaker 1: It meant the action would last longer and hopefully attract

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Speaker 1: more attention. In March of nineteen eighty eight, Act Up

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Speaker 1: organized an action on Wall Street to mark the group's

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Speaker 1: first anniversary. Harrington joined Wave three as a trainee.

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Speaker 14: And we all sat down in an intersection in block

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Speaker 14: traffic for at least an hour, chanting and waving condoms

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Speaker 14: in the air.

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Speaker 12: And I have been ignoring us all these years, and

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Speaker 12: the only way you get attention from them is to

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Speaker 12: hit them where it hurts, and in New York City,

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Speaker 12: of course, traffic hurts.

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Speaker 14: I got arrested along with my fellow trainees, and we

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Speaker 14: were off to the races.

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Speaker 5: As fast as they could.

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Speaker 3: Take one group off the streets, another group sat down.

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Speaker 13: When it was over, one hundred and five age demonstrators

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Speaker 13: took their curtain calls.

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Speaker 2: And police buses on.

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Speaker 14: The way to jail, and so I was instantly hooked.

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Speaker 1: While protests like the Wall Street Action began to give

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Speaker 1: act UP a public profile, members working behind closed doors

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Speaker 1: put just as much effort into something less spectacular, educating

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Speaker 1: themselves and each other. Sarah Schulman again.

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Speaker 3: When you would come into the meeting room, the first

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Speaker 3: thing you did was pass along the table and it

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Speaker 3: would be filled with handouts about all kinds of things,

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Speaker 3: about new medical investigations, about policies, about housing legislation, communications

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Speaker 3: from incarcerated people with AIDS, issues about mothers, I mean,

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Speaker 3: all kinds of information, and you would pick up every flyer.

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Speaker 1: Act up's philosophy was that people with AIDS and their

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Speaker 1: allies needed an intimate understanding of what AIDS was, what

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Speaker 1: was being done about it, and what wasn't.

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Speaker 3: There were regular teachings that you could attend. Whatever it

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Speaker 3: was that you wanted to find out about, you could

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Speaker 3: go to a teaching and the people who were experts

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Speaker 3: would give you information to read and they would explain

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Speaker 3: the basics.

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Speaker 1: Mark Harrington, a self proclaimed science nerd, was drawn to

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Speaker 1: a study group organized by a subcommittee of act UP

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Speaker 1: called Treatment and Data.

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Speaker 14: It was a small group of people that was led

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Speaker 14: by a pharmaceutical chemist named doctor iris Long, who had

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Speaker 14: somewhat randomly come across an act UP meeting and became

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Speaker 14: inspired by the issue and apply to her pharmaceutical knowledge

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Speaker 14: to helping us understand pharmacology and drug trials.

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Speaker 1: With guidance from iris Long, members of Treatment and Data

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Speaker 1: started learning about the drug development process and formulating new

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Speaker 1: questions about which drugs were being tested and how they were,

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Speaker 1: essentially becoming amateur scientists.

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Speaker 11: More than eighty AIDS treatments are being tested in about

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Speaker 11: one hundred and fifty studies in the US, according to

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Speaker 11: the FDA, and did several of these drugs that AIDS

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Speaker 11: activists want Immediate access to.

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Speaker 1: The process for testing and approving potential new therapies for

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Speaker 1: AIDS ran through two parts of the federal bureaucracy. The

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Speaker 1: drug approval process was handled by the Food and Drug Administration,

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Speaker 1: where they reviewed drugs after they had gone through test

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Speaker 1: tube and animal studies. If the FDA gave the green light,

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Speaker 1: a drug could move into clinical trials in humans.

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Speaker 11: After minimal study animal studies. The normal FDA approval process

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Speaker 11: has three phases. Phase three averages four years. The whole

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Speaker 11: process can take from two to ten years, more than eight.

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Speaker 1: So that was the FDA. The other major component of

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Speaker 1: the drug development bureaucracy was the National Institutes of Health

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Speaker 1: the NIH, a sprawling agency made up of more than

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Speaker 1: two dozen federally funded research hubs. The part of NIH

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Speaker 1: responsible for developing new AIDS treatments was the National Institute

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Speaker 1: for Allergy and Infectious Disease.

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Speaker 4: We turned now to the man who oversees all AIDS

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Speaker 4: treatment research for the federal government.

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Speaker 1: The government official running this institute during the late nineteen

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Speaker 1: eighties was the same one who runs it today.

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Speaker 4: He is doctor Anthony Fauci, director of the National Institute

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Speaker 4: of Allergy and Infectious Disease, a.

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Speaker 1: Division of the National Mark Harrington, through his work with

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Speaker 1: act UP, would come to know Fauci personally.

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Speaker 14: Tony took the HELM as the AIDS crisis was deepening,

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Speaker 14: and right as Congress began turning on the spigots of

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Speaker 14: money for AIDS research at the NIH.

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Speaker 1: It was under pressure from Fauci that the White House

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Speaker 1: agreed in nineteen eighty six to give the NAH around

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Speaker 1: three hundred million dollars in AIDS funding. With that money,

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Speaker 1: Fauci was able to initiate research on several new drugs,

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Speaker 1: including AZT.

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Speaker 5: At that point, I set up drug discovery units. I

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Speaker 5: began to build the clinical trial network.

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Speaker 1: This is Fauci in an interview we did with him

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Speaker 1: this winter.

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Speaker 5: Subsequent to that first initial infusion of money that we got.

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Speaker 5: The big challenge was going from a disease in which

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Speaker 5: you had no treatments at all except treating oppotunistic infections

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Speaker 5: and tumb is to being able to directly treat the virus.

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Speaker 1: It's important to remember that at this time there was

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Speaker 1: no such thing as an emergency use authorization for a

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Speaker 1: drug the way there is now. So for a desperate population,

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Speaker 1: early clinical trials like the ones Fauci was overseeing were

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Speaker 1: the only way to get act to AIDS drugs, even

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Speaker 1: if they weren't yet proven to work. Many felt that

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Speaker 1: taking them was still better than doing nothing. But as

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Speaker 1: Mark Harrington and his peers saw firsthand, getting into the

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Speaker 1: trials was complicated, and some people were shut out of

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Speaker 1: them entirely.

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Speaker 14: We would sometimes go to a hospital where a doctor

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Speaker 14: was running a clinical trial and demand to speak to

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Speaker 14: him and try to find out why nobody was enrolling

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Speaker 14: in his clinical trial because nobody knew about it and

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Speaker 14: its INTR criteria excluded people with a lot of AIDS

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Speaker 14: defining conditions.

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Speaker 1: To understand why certain people were excluded from drug trials,

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Speaker 1: it helps to remember that AIDS is an umbrella term

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Speaker 1: for a variety of conditions that stem from the immune

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Speaker 1: system being destroyed by HIV. Different people experience different AIDS

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Speaker 1: defining conditions. Some of them you've heard about, like CAPESI sarcoma,

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Speaker 1: and numicistas pneumonia, but there are dozens of others, and

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Speaker 1: as Sarah Schulman told me, some AIDS defining conditions that

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Speaker 1: occurred primarily in women weren't included for years in the

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Speaker 1: CDC's official definition of the disease.

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Speaker 3: The government had an official definition of AIDS that listed

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Speaker 3: what symptoms you had to have in order to get

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Speaker 3: an aid's diagnosis, and women were getting symptoms that were

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Speaker 3: not on the list, so that women were getting AIDS

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Speaker 3: and dying and never qualifying for benefits and not getting

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Speaker 3: access to experimental treatments. If women couldn't get into the trials,

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Speaker 3: the medication could ever be tested on them.

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Speaker 1: In practice, drug trials were mostly populated by white men

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Speaker 1: and few, if any women or people of color. On

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Speaker 1: top of that, participating in a clinical trial often required

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Speaker 1: patients to give up the medications they were already using

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Speaker 1: to treat their symptoms.

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Speaker 3: In some trials, people were asked to give up a

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Speaker 3: medication that kept them from going so that they could

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Speaker 3: get a medication that would keep them from getting demented.

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Speaker 3: Like human beings, should not be put in a position

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Speaker 3: to have to make decisions like that so that science

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Speaker 3: can have clean data.

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Speaker 1: In a vacuum. It makes sense to want to test

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Speaker 1: a drug under conditions that allow you to isolate its effect.

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Speaker 1: Any extra variable or interference from other treatments can make

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Speaker 1: it harder to achieve that ideal.

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Speaker 5: Generally, the strict protocols that had been serving the biomedical

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Speaker 5: and clinical research community well for decades of having highly

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Speaker 5: controlled clinical trials, which now retrospectively, we see that it

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Speaker 5: was not ideally suited to the very special circumstances of HIV.

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Speaker 1: Fauci, who was never press shy, became the face of

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Speaker 1: the federal government's efforts on AIDS. This meant answering charges

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Speaker 1: that he and agency we're moving too slowly. Here's Fauci

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Speaker 1: being interviewed on PBS in nineteen eighty six.

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Speaker 4: Do you ever have any feelings of remorse of regret

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Speaker 4: that the system works the way it does.

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Speaker 9: It certainly is very difficult to see so many young

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Speaker 9: men suffer and die when we don't have a treatment.

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Speaker 9: That is the most powerful impetus for us. As contradictory

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Speaker 9: as it made sound to do the study in as

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Speaker 9: scientifically a sound way as possible, so.

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Speaker 1: That Fauci tried to explain that there were good reasons

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Speaker 1: the system was set up the way. It was really

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Speaker 1: concerned that if scientists started cutting corners and rushing drugs

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Speaker 1: to market that hadn't been rigorously tested, it would only

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Speaker 1: make things worse.

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Speaker 9: Because trying at this point to say, well, we're really

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Speaker 9: concerned about the patients who have the disease, now which

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Speaker 9: we are in fact quite concerned, let's modify the scientific

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Speaker 9: integrity of the study. The real shame and tragedy will

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Speaker 9: be five years down the pike if because of that compromwise,

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Speaker 9: we still don't have an agent that's safe and effectively

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Speaker 9: because we compromised our method of testing it, that would

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Speaker 9: be the real tragedy.

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Speaker 1: Robert Vasquez Pacheco saw a different tragedy. To him, it

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Speaker 1: appeared the system just wasn't set up to deal with

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Speaker 1: a new disease that gave most people just eighteen months

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Speaker 1: to live.

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Speaker 6: The reality was that the drug approval process could take

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Speaker 6: upwards of fifteen years, and so we said, you guys

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Speaker 6: have to change that process.

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Speaker 2: People need medication.

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Speaker 6: Now now, not ten years from now.

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Speaker 2: They'll be dead.

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Speaker 1: Members of act UP had come to believe there were

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Speaker 1: fundamental problems with the drug development process. In the fall

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Speaker 1: of nineteen eighty eight, they channeled their outrage into their

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Speaker 1: biggest public action yet, and.

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Speaker 14: So ACTUP was trying to figure out what kind of

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Speaker 14: national action we wanted to do to kind of heighten

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Speaker 14: our message in whether it should be like, say, at

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Speaker 14: the White House or at the mall or somewhere else.

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Speaker 11: Now.

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Speaker 3: Historically, progressive movements had always chosen symbolic objects like the

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Speaker 3: White House or the Capitol, but in this case, one

415
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Speaker 3: of actup's leaders realized that we should be picking actual obstacles,

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Speaker 3: not symbolic ones, and propose that the action be in Rockville, Maryland,

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Speaker 3: at the FDA.

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Speaker 1: On October eleventh, nineteen eighty eight, more than a thousand

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Speaker 1: act UP members arrived at the FDA's campus in Rockville, Maryland.

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Speaker 1: Many carried signs in the shape of tombstones decorated with

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Speaker 1: phrases like azy T Isn't enough and killed by the FDA.

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Speaker 15: Thank you all for coming.

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Speaker 12: You are witnessing the largest demonstration ever in front of

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Speaker 12: the Food and Drug Administration.

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Speaker 1: Some protesters came wearing white lab coats and gloves covered

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Speaker 1: in red paint to symbolize that the FDA had blood

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Speaker 1: on its hands. The national media sent reporters to Rockville

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Speaker 1: to witness act up in action.

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Speaker 8: Ronald Reagan was hoisted in effigy this morning as hundreds

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Speaker 8: of AIDS activists descended on the Food and Drug Administration,

431
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Speaker 8: determined to shut it down the charge that while people

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Speaker 8: are dying, FDA delays the demand that the FDA speed

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Speaker 8: up approval of drugs that show any promise against AIDS.

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Speaker 1: Robert Vasquez Pacheco was at the protest serving as a marshal,

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Speaker 1: a peacekeeper essentially.

436
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Speaker 6: So marshals were the ones who were in charge of

437
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Speaker 6: sort of crowd safety. You would be patrolling the lines

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Speaker 6: to make sure that people were keeping calm, or like

439
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Speaker 6: please do not go up into the cops face, you know,

440
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Speaker 6: and scream at him.

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Speaker 1: There were about three hundred and fifty police officers on

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Speaker 1: the scene. Basquez Pacheco was wary.

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Speaker 2: Well.

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Speaker 6: I had told people I do not get arrested at demonstrations.

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Speaker 6: I said, I am a Puerto Rican. We disappear into

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Speaker 6: the prison system, you know, so I am not going

447
00:26:08,040 --> 00:26:16,320
Speaker 6: to get arrested. Someone got a little carried away with

448
00:26:16,320 --> 00:26:18,800
Speaker 6: themselves and broke a door, a glass door, trying to

449
00:26:18,840 --> 00:26:22,680
Speaker 6: get in, and immediately the cops descended on it. Of course,

450
00:26:22,720 --> 00:26:25,800
Speaker 6: myself and some marshalls showed up, you know as well

451
00:26:25,840 --> 00:26:28,480
Speaker 6: to like, okay, pull people back, you know, keep people safe,

452
00:26:28,720 --> 00:26:31,800
Speaker 6: pull people back, and the cops, you know, just started

453
00:26:31,880 --> 00:26:34,040
Speaker 6: arresting people. And I remember what cop just looked at

454
00:26:34,160 --> 00:26:37,280
Speaker 6: looked at me, said take that one because I had

455
00:26:37,280 --> 00:26:38,200
Speaker 6: a walkie talkie.

456
00:26:38,680 --> 00:26:41,440
Speaker 1: Vazquez Pacheco and all the others who were arrested in

457
00:26:41,520 --> 00:26:45,280
Speaker 1: Rockville were taken by bus to the Montgomery County Police Academy,

458
00:26:45,880 --> 00:26:48,000
Speaker 1: where the police had set up their gym as a

459
00:26:48,040 --> 00:26:59,040
Speaker 1: temporary detention center. Eventually they let everyone go. The protest

460
00:26:59,080 --> 00:27:02,760
Speaker 1: at the FDA was a success. Act Up had gathered

461
00:27:02,800 --> 00:27:05,560
Speaker 1: AIDS activists from around the country in a common cause,

462
00:27:06,359 --> 00:27:09,639
Speaker 1: and they had made their demands literally front page news.

463
00:27:10,000 --> 00:27:12,760
Speaker 7: Angry demonstrators managed to close down the Food and Drug

464
00:27:12,800 --> 00:27:16,280
Speaker 7: Administration Today, they accused the agency under President Reagan of

465
00:27:16,359 --> 00:27:18,760
Speaker 7: wasting time in the war against ADS.

466
00:27:19,119 --> 00:27:21,760
Speaker 6: That sort of changed everything when they said, oh, wait

467
00:27:21,800 --> 00:27:24,800
Speaker 6: a minute, you know, these fagots are pissed off and

468
00:27:24,840 --> 00:27:26,000
Speaker 6: they're not playing around.

469
00:27:28,160 --> 00:27:31,480
Speaker 1: In June of nineteen eighty nine, about nine months after

470
00:27:31,520 --> 00:27:35,480
Speaker 1: the protest in Rockville, the FDA approved two drugs to

471
00:27:35,520 --> 00:27:39,480
Speaker 1: treat people with AIDS, one for numisistus pneumonia and one

472
00:27:39,520 --> 00:27:44,760
Speaker 1: for cytomegalovirus retinitis, a condition that left many AIDS patients blind.

473
00:27:45,400 --> 00:27:48,400
Speaker 1: Both were drugs developed for other purposes that act UP

474
00:27:48,440 --> 00:27:52,600
Speaker 1: had been demanding access to. According to Mark Harrington, the

475
00:27:52,680 --> 00:27:55,080
Speaker 1: fact that they were finally approved was a sign that

476
00:27:55,119 --> 00:27:56,720
Speaker 1: the government was starting to listen.

477
00:27:57,280 --> 00:27:59,280
Speaker 14: The FDA began to think about how to do things

478
00:27:59,320 --> 00:28:02,440
Speaker 14: differently because they realized that the traditional way of doing

479
00:28:02,520 --> 00:28:07,400
Speaker 14: studies was too slow for a pandemic, and the traditional

480
00:28:07,480 --> 00:28:11,680
Speaker 14: way of doing very restrictive enrollment criteria was not only

481
00:28:11,720 --> 00:28:14,920
Speaker 14: too restrictive for a pandemic like AIDS, but was actually

482
00:28:14,960 --> 00:28:16,080
Speaker 14: too restrictive period.

483
00:28:16,760 --> 00:28:19,520
Speaker 1: It was around this time that AIDS activists began to

484
00:28:19,640 --> 00:28:24,720
Speaker 1: rally around a new slogan, Drugs into Bodies. It reflected

485
00:28:24,720 --> 00:28:28,639
Speaker 1: a mix of hope and desperation, suggesting that if only

486
00:28:28,720 --> 00:28:32,480
Speaker 1: scientists could try enough different drugs, one of them would

487
00:28:32,480 --> 00:28:37,000
Speaker 1: surely turn out to work. In the meantime, anything was

488
00:28:37,040 --> 00:28:37,959
Speaker 1: better than nothing.

489
00:28:38,840 --> 00:28:42,880
Speaker 10: At the time, roughly fifty percent of gay men in

490
00:28:43,160 --> 00:28:45,320
Speaker 10: New York City were infected with HIV.

491
00:28:46,280 --> 00:28:49,720
Speaker 1: This is Garan's Frankie Ruda, who joined Act Up in

492
00:28:49,800 --> 00:28:52,560
Speaker 1: nineteen eighty eight at the age of seventeen.

493
00:28:53,080 --> 00:28:56,440
Speaker 10: I mean, just imagine if half the people you went

494
00:28:56,480 --> 00:29:00,520
Speaker 10: to high school with were suddenly told that they were

495
00:29:00,560 --> 00:29:03,920
Speaker 10: probably gonna die in the next three to seven years.

496
00:29:04,640 --> 00:29:07,280
Speaker 10: Drugs and the bodies was a chance at living. It

497
00:29:07,360 --> 00:29:08,080
Speaker 10: was pretty simple.

498
00:29:08,880 --> 00:29:11,320
Speaker 1: Nobody an act Up seemed to pay much attention to

499
00:29:11,320 --> 00:29:16,000
Speaker 1: Frankie Ruda's age. She was outspoken and enthusiastic, and the

500
00:29:16,040 --> 00:29:18,640
Speaker 1: fact that she was a teenager probably just made her

501
00:29:18,680 --> 00:29:19,600
Speaker 1: a better activist.

502
00:29:20,040 --> 00:29:21,840
Speaker 10: I had two years of high school and a GD

503
00:29:23,840 --> 00:29:26,560
Speaker 10: like you know, but I was I had very high

504
00:29:26,640 --> 00:29:29,760
Speaker 10: reading skills and apparently an unbounded sense of confidence, so

505
00:29:32,320 --> 00:29:36,240
Speaker 10: or at least determination. You know, I wasn't doing anything

506
00:29:36,240 --> 00:29:38,120
Speaker 10: in a calculated way. Nobody was doing anything in a

507
00:29:38,120 --> 00:29:44,520
Speaker 10: particularly calculated way. It was just this urgent, urgent, urgent need.

508
00:29:45,320 --> 00:29:48,640
Speaker 10: And the only question ask of anybody is not like

509
00:29:48,920 --> 00:29:51,520
Speaker 10: who are you or how educated you are, or like

510
00:29:51,560 --> 00:29:53,680
Speaker 10: do you have money or do you have the right

511
00:29:53,720 --> 00:29:55,960
Speaker 10: to do this? The only question act up asked of

512
00:29:55,960 --> 00:29:59,880
Speaker 10: anybody is can you help? And if you could help,

513
00:30:00,120 --> 00:30:04,120
Speaker 10: then people were really happy to work with you on anything.

514
00:30:05,080 --> 00:30:08,280
Speaker 1: Like Mark Harrington, Frankie Ruda was drawn to the Treatment

515
00:30:08,320 --> 00:30:12,080
Speaker 1: and Data Subcommittee. There, she learned about drugs that seemed

516
00:30:12,080 --> 00:30:14,960
Speaker 1: like they might be worth testing on AIDS patients, including

517
00:30:15,000 --> 00:30:17,800
Speaker 1: some that were approved in other countries but weren't available

518
00:30:17,840 --> 00:30:21,240
Speaker 1: in the United States. At one point, Frankie Ruda started

519
00:30:21,240 --> 00:30:23,600
Speaker 1: working with a group that was importing such drugs and

520
00:30:23,600 --> 00:30:25,800
Speaker 1: setting up underground trials in New York.

521
00:30:26,640 --> 00:30:29,840
Speaker 10: I was part of the team that decided which medications

522
00:30:29,840 --> 00:30:32,479
Speaker 10: we would import in this kind of legal gray area.

523
00:30:33,080 --> 00:30:36,080
Speaker 10: So the idea there was that, you know, we would

524
00:30:36,160 --> 00:30:39,320
Speaker 10: do sort of citizen science research, read the medical literature,

525
00:30:39,840 --> 00:30:44,000
Speaker 10: talk to doctors, talk to manufacturers, find out everything that

526
00:30:44,080 --> 00:30:47,200
Speaker 10: was known about how a medication and a pathogen might

527
00:30:47,240 --> 00:30:50,680
Speaker 10: respond to each other. There was a category we called

528
00:30:50,720 --> 00:30:53,400
Speaker 10: what the hell drugs, where we knew that they were

529
00:30:53,400 --> 00:30:56,640
Speaker 10: extremely safe, we had no idea if they really worked,

530
00:30:56,800 --> 00:30:59,520
Speaker 10: and we were like, well, can hurt might help? What

531
00:30:59,600 --> 00:31:00,280
Speaker 10: the hell you know?

532
00:31:03,000 --> 00:31:06,200
Speaker 1: But identifying potential drugs was only part of the equation.

533
00:31:07,240 --> 00:31:09,800
Speaker 1: Making them accessible to people who couldn't wait around for

534
00:31:09,840 --> 00:31:13,080
Speaker 1: them to be approved was just as important, and during

535
00:31:13,080 --> 00:31:16,320
Speaker 1: the summer of nineteen eighty nine, act up rallied around

536
00:31:16,360 --> 00:31:20,960
Speaker 1: an idea known as parallel track drug trials. The pitch

537
00:31:21,120 --> 00:31:24,200
Speaker 1: was that scientists should conduct their clinical trials as rigorously

538
00:31:24,240 --> 00:31:28,840
Speaker 1: as they wanted, but also simultaneously, they should make experimental

539
00:31:28,920 --> 00:31:32,120
Speaker 1: drugs more widely available to people who had the disease.

540
00:31:32,840 --> 00:31:36,400
Speaker 1: To Harrington and his colleagues, parallel track seemed like a

541
00:31:36,440 --> 00:31:37,440
Speaker 1: no brainer.

542
00:31:37,800 --> 00:31:40,560
Speaker 14: Even just from the nine months that it was from

543
00:31:40,600 --> 00:31:44,160
Speaker 14: the Sea's control of the FDA. Our understanding and knowledge

544
00:31:44,160 --> 00:31:47,120
Speaker 14: about science had grown exponentially in that period of time,

545
00:31:47,120 --> 00:31:51,120
Speaker 14: and our demands were much more precise and much more doable.

546
00:31:51,840 --> 00:31:54,760
Speaker 1: To get parallel track in front of the scientific community,

547
00:31:55,200 --> 00:31:57,840
Speaker 1: Harrington and the others from act up crashed a medical

548
00:31:57,880 --> 00:32:01,640
Speaker 1: conference in Montreal presented their proposal to a group of

549
00:32:01,640 --> 00:32:06,120
Speaker 1: scientists that included Anthony Fauci. In addition to parallel track,

550
00:32:06,520 --> 00:32:09,960
Speaker 1: act UP sketched out an entire research agenda for which

551
00:32:10,040 --> 00:32:11,880
Speaker 1: drugs to test and in what order.

552
00:32:12,560 --> 00:32:14,560
Speaker 14: We rolled out the same demands with each one of

553
00:32:14,600 --> 00:32:17,400
Speaker 14: them that we want this parallel track research into the

554
00:32:17,400 --> 00:32:21,440
Speaker 14: operat news take infections and cancers, research to allow people

555
00:32:21,480 --> 00:32:25,040
Speaker 14: of color, women, drug users, and children into AID clinical trials,

556
00:32:25,680 --> 00:32:26,560
Speaker 14: and we want it now.

557
00:32:27,160 --> 00:32:28,880
Speaker 1: Fauci at least was impressed.

558
00:32:29,480 --> 00:32:35,640
Speaker 5: They trained themselves literally to become scientists without I mean,

559
00:32:35,720 --> 00:32:40,520
Speaker 5: they were lawyers, they were stockbrokers, they were theatrical people,

560
00:32:41,400 --> 00:32:45,560
Speaker 5: and yet they studied the situation and came up with

561
00:32:45,640 --> 00:32:50,080
Speaker 5: a research genda that was really very very well founded,

562
00:32:50,760 --> 00:32:53,600
Speaker 5: an extraordinary and I read it and it was like, wow,

563
00:32:54,360 --> 00:32:56,800
Speaker 5: we got some really serious partners here.

564
00:33:00,160 --> 00:33:03,240
Speaker 1: A few weeks later, Fauci was in San Francisco where

565
00:33:03,240 --> 00:33:05,720
Speaker 1: he met an aid's patient who pressed him further on

566
00:33:05,760 --> 00:33:07,080
Speaker 1: the need for parallel track.

567
00:33:07,640 --> 00:33:11,040
Speaker 5: It was articulated to me by a person who was

568
00:33:11,120 --> 00:33:15,920
Speaker 5: lying in bed, who was on AST, whose virus was controlled,

569
00:33:15,920 --> 00:33:17,240
Speaker 5: but it was still very sick.

570
00:33:17,840 --> 00:33:20,440
Speaker 1: The patient had a condition that was making him go blind.

571
00:33:21,280 --> 00:33:24,760
Speaker 1: A drug called gencyclovir could prevent him from losing his sight,

572
00:33:25,320 --> 00:33:27,200
Speaker 1: but he wasn't allowed to take it at the same

573
00:33:27,280 --> 00:33:30,360
Speaker 1: time as AZT if he wanted to stay in the trial.

574
00:33:31,040 --> 00:33:33,160
Speaker 5: And I remember when I went to the person's room

575
00:33:33,600 --> 00:33:37,680
Speaker 5: down in the Castro in San Francisco, and I sat

576
00:33:37,720 --> 00:33:40,760
Speaker 5: down by his bedside with his partner, and he looked

577
00:33:40,800 --> 00:33:43,040
Speaker 5: at me and he said, doctor Fauci, do you see

578
00:33:43,080 --> 00:33:46,280
Speaker 5: what the government is doing. You're giving me a choice.

579
00:33:46,720 --> 00:33:49,680
Speaker 5: I could either take AZT and not gan cyclovir and

580
00:33:49,720 --> 00:33:53,479
Speaker 5: go blind, or I can take gan cyclovir and maintain

581
00:33:53,600 --> 00:33:56,640
Speaker 5: my vision and die. What kind of choice is that?

582
00:33:57,640 --> 00:34:01,040
Speaker 5: And it became eminently clear to me that we just

583
00:34:01,160 --> 00:34:02,280
Speaker 5: were not getting it.

584
00:34:03,280 --> 00:34:07,040
Speaker 1: The next day, Fauci publicly endorsed Parallel Track during a

585
00:34:07,080 --> 00:34:07,960
Speaker 1: town hall meeting.

586
00:34:08,880 --> 00:34:12,880
Speaker 5: That's when I decided that I would try and with them,

587
00:34:13,800 --> 00:34:20,720
Speaker 5: help to change the system. It wasn't easy for me, because,

588
00:34:20,760 --> 00:34:24,359
Speaker 5: on the one hand, there were still those among the

589
00:34:24,400 --> 00:34:29,719
Speaker 5: activists who still didn't think we were doing things well

590
00:34:29,840 --> 00:34:33,400
Speaker 5: enough and quickly enough. And there were many among the

591
00:34:33,480 --> 00:34:38,959
Speaker 5: scientific community who thought I was caving in to the activists.

592
00:34:39,840 --> 00:34:42,400
Speaker 5: But I knew deep down that I was doing the

593
00:34:42,480 --> 00:34:42,960
Speaker 5: right thing.

594
00:34:51,000 --> 00:34:55,120
Speaker 1: Even as Fauci grew more sympathetic to Actup's demands, many

595
00:34:55,160 --> 00:34:57,680
Speaker 1: activists continued to regard him with suspicion.

596
00:34:58,200 --> 00:35:00,719
Speaker 13: We're with treatment in data, with many, and we're going

597
00:35:00,760 --> 00:35:04,280
Speaker 13: to facilitate this meeting as soon as doctor and m Fauci.

598
00:35:05,400 --> 00:35:08,719
Speaker 1: In the fall of nineteen eighty nine, Fauci arranged to

599
00:35:08,719 --> 00:35:11,239
Speaker 1: attend an act UP meeting in New York to be.

600
00:35:11,280 --> 00:35:14,279
Speaker 13: Respectful of people who were talking, that they're not be

601
00:35:14,400 --> 00:35:17,920
Speaker 13: cheering or hissing or booing. That we really tried to

602
00:35:18,080 --> 00:35:22,120
Speaker 13: use this meeting as let's call it a working confrontation.

603
00:35:23,200 --> 00:35:25,920
Speaker 5: I went down to the Gay and Lesbian Community Center

604
00:35:26,680 --> 00:35:30,440
Speaker 5: down in Greenwich Village literally by myself, I think I

605
00:35:30,480 --> 00:35:33,040
Speaker 5: had one of my staff was with me, and got

606
00:35:33,080 --> 00:35:35,200
Speaker 5: in the room where there were about one hundred act

607
00:35:35,280 --> 00:35:40,800
Speaker 5: UP people who were bristling within many respects, anger and

608
00:35:41,880 --> 00:35:44,200
Speaker 5: being upset with how the government was acting.

609
00:35:44,719 --> 00:35:48,200
Speaker 14: Tony came up to a meeting of Treatment and Data

610
00:35:49,080 --> 00:35:52,799
Speaker 14: and submitted to basically three hours of tough questions from us,

611
00:35:53,000 --> 00:35:54,840
Speaker 14: including accusations of genocide.

612
00:35:54,960 --> 00:35:58,960
Speaker 13: Hey, doctor Fauci, I don't question you about where your

613
00:35:59,000 --> 00:36:02,640
Speaker 13: moral commitment did I'm talking about the practicality of how

614
00:36:02,680 --> 00:36:03,800
Speaker 13: we get things done.

615
00:36:04,120 --> 00:36:06,239
Speaker 6: You are in a spot which people say, what the

616
00:36:06,280 --> 00:36:07,120
Speaker 6: hell is he doing?

617
00:36:08,120 --> 00:36:10,799
Speaker 5: And I said, okay, I'm here, I'm with you, I'm

618
00:36:10,800 --> 00:36:15,320
Speaker 5: sitting down among you. I don't have any body sticking

619
00:36:15,400 --> 00:36:18,040
Speaker 5: up for me or protecting me. Let's hear what you

620
00:36:18,120 --> 00:36:18,840
Speaker 5: have to say.

621
00:36:19,920 --> 00:36:20,600
Speaker 10: What what we're.

622
00:36:20,440 --> 00:36:25,280
Speaker 15: Saying is that people, including yourself, in some levels, must

623
00:36:25,320 --> 00:36:29,920
Speaker 15: have one their conscience. These deaths why there is a

624
00:36:30,000 --> 00:36:33,120
Speaker 15: more aggressive movement to make sure that the next opportunistic

625
00:36:33,160 --> 00:36:36,000
Speaker 15: infections aren't dealt with more effectively and aggressive mood.

626
00:36:36,040 --> 00:36:39,319
Speaker 1: The meeting was quite heavy on the science. Much of

627
00:36:39,360 --> 00:36:42,480
Speaker 1: the discussion revolved around which drugs should be tested first

628
00:36:42,920 --> 00:36:46,160
Speaker 1: and how Fauci could more effectively use his political muscle.

629
00:36:47,320 --> 00:36:50,480
Speaker 1: Fauci agreed with some of the criticism and conceded that

630
00:36:50,480 --> 00:36:52,400
Speaker 1: the medical establishment could do better.

631
00:36:52,640 --> 00:36:54,160
Speaker 16: To you, I agree with you completely.

632
00:36:54,200 --> 00:36:56,479
Speaker 5: I told you then, I'll tell you now. Things off better.

633
00:36:56,560 --> 00:36:59,000
Speaker 16: We could send you a list if you don't already

634
00:36:59,040 --> 00:37:01,839
Speaker 16: have it, of all of the activities.

635
00:37:01,239 --> 00:37:04,240
Speaker 5: That are going on, but it isn't enough. We obviously still.

636
00:37:04,040 --> 00:37:04,919
Speaker 10: Need to do more.

637
00:37:05,520 --> 00:37:09,160
Speaker 1: At other points, Fauci aggressively corrected what act UP members

638
00:37:09,160 --> 00:37:09,919
Speaker 1: were saying to him.

639
00:37:10,239 --> 00:37:13,919
Speaker 5: Now, that's wrong, but you keep saying I'm wrong.

640
00:37:15,880 --> 00:37:16,560
Speaker 7: You see, this is.

641
00:37:16,480 --> 00:37:16,839
Speaker 2: What I mean.

642
00:37:16,920 --> 00:37:18,040
Speaker 5: You make a presumption on them.

643
00:37:18,080 --> 00:37:19,839
Speaker 16: Tell you why you're absolutely wrong.

644
00:37:19,920 --> 00:37:22,959
Speaker 1: You see, in those moments, Fauci could come off as

645
00:37:23,120 --> 00:37:24,080
Speaker 1: kind of patronizing.

646
00:37:24,400 --> 00:37:27,200
Speaker 16: I think that you may be naive and understanding how

647
00:37:27,280 --> 00:37:28,520
Speaker 16: you can get things done.

648
00:37:28,560 --> 00:37:29,320
Speaker 6: In Washington.

649
00:37:30,320 --> 00:37:33,560
Speaker 16: You don't get many shots of going out like the

650
00:37:33,600 --> 00:37:37,040
Speaker 16: lone range, and you get one shot at get something done.

651
00:37:37,080 --> 00:37:39,320
Speaker 14: If you do that, that's the name of the game.

652
00:37:42,239 --> 00:37:44,800
Speaker 1: Despite the tensions that flared up at that first meeting

653
00:37:44,840 --> 00:37:48,080
Speaker 1: in New York, over the coming months, Fauci and some

654
00:37:48,120 --> 00:37:50,520
Speaker 1: of his colleagues started hosting members of the Treatment and

655
00:37:50,600 --> 00:37:54,919
Speaker 1: Data Group in Washington. Both sides remember the experience as

656
00:37:54,920 --> 00:37:56,240
Speaker 1: something of a culture clash.

657
00:37:57,200 --> 00:37:59,360
Speaker 5: We learned a lot from them, and they learned a

658
00:37:59,360 --> 00:38:04,360
Speaker 5: lot from us. But it wasn't always a very smooth road.

659
00:38:05,400 --> 00:38:08,840
Speaker 10: I remember going to meetings in Washington, DC and like

660
00:38:09,040 --> 00:38:11,799
Speaker 10: just getting up to the microphone and asking questions, you know,

661
00:38:12,200 --> 00:38:14,920
Speaker 10: wearing my like five dollars miniskirt that I got at

662
00:38:14,920 --> 00:38:18,839
Speaker 10: a street fair in some parking lot in Manhattan, you know,

663
00:38:19,080 --> 00:38:21,439
Speaker 10: and like they just looked at us, like, who are

664
00:38:21,480 --> 00:38:24,360
Speaker 10: you people? It felt like we were from a totally

665
00:38:24,360 --> 00:38:25,040
Speaker 10: different world.

666
00:38:25,920 --> 00:38:29,719
Speaker 1: In many ways, they were. For years now, the activists

667
00:38:29,719 --> 00:38:33,520
Speaker 1: have been operating in the epicenter of the epidemic. Fauci

668
00:38:33,600 --> 00:38:36,200
Speaker 1: and his colleagues, on the other hand, worked in bucolic

669
00:38:36,280 --> 00:38:40,520
Speaker 1: suburban communities, far away from the mass death that surrounded

670
00:38:40,560 --> 00:38:45,120
Speaker 1: act UP members in New York. By confronting the scientists directly,

671
00:38:45,800 --> 00:38:48,839
Speaker 1: act UP was forcing them to perceive the crisis more

672
00:38:48,880 --> 00:38:50,120
Speaker 1: clearly and vividly.

673
00:38:51,480 --> 00:38:56,400
Speaker 14: Once the researchers began to know living people with AIDS,

674
00:38:57,600 --> 00:39:00,960
Speaker 14: it changed people like Tony Fauci when they began to

675
00:39:00,960 --> 00:39:03,839
Speaker 14: meet with us not just as patients but as activists

676
00:39:03,880 --> 00:39:06,880
Speaker 14: and antagonists and people who wanted to get them to

677
00:39:06,920 --> 00:39:09,759
Speaker 14: do the right thing. And then they would lie awake

678
00:39:09,800 --> 00:39:11,640
Speaker 14: at night and toss and turn and think about it

679
00:39:11,680 --> 00:39:14,759
Speaker 14: and realize that in some cases we were right. And

680
00:39:14,840 --> 00:39:17,520
Speaker 14: meanwhile we would be tossing and turning back in New

681
00:39:17,600 --> 00:39:21,120
Speaker 14: York after meeting with them, and we would sometimes learn

682
00:39:21,320 --> 00:39:25,560
Speaker 14: things from them that we hadn't thought of before, And

683
00:39:25,640 --> 00:39:29,520
Speaker 14: we began going from having an argument to having a conversation,

684
00:39:30,360 --> 00:39:32,799
Speaker 14: and from having a conversation to having a partnership.

685
00:39:41,640 --> 00:39:44,520
Speaker 1: The new found alliance between Fauci and the Treatment and

686
00:39:44,600 --> 00:39:47,160
Speaker 1: Data Group did not mean that act UP was done

687
00:39:47,160 --> 00:39:50,480
Speaker 1: protesting him. There was one issue in particular that the

688
00:39:50,520 --> 00:39:51,719
Speaker 1: activists were focused on.

689
00:39:52,560 --> 00:39:55,120
Speaker 14: We started telling Tony that we wanted him to get

690
00:39:55,200 --> 00:39:58,760
Speaker 14: us invited to the meeting of the NIH funded clinical

691
00:39:58,760 --> 00:40:01,360
Speaker 14: trials network, which was called the AIDS Clinical Trial Group.

692
00:40:02,080 --> 00:40:06,280
Speaker 1: The AIDS Clinical Trial Group at NIH determined which treatments

693
00:40:06,320 --> 00:40:10,319
Speaker 1: would be studied, and when activists insisted that their new

694
00:40:10,360 --> 00:40:13,720
Speaker 1: partnership with Fauci was little more than lip service until

695
00:40:13,760 --> 00:40:16,840
Speaker 1: people with AIDS were part of the group and included

696
00:40:16,960 --> 00:40:18,239
Speaker 1: in making those decisions.

697
00:40:18,880 --> 00:40:21,520
Speaker 14: And then he said, yeah, you can come, but the

698
00:40:21,600 --> 00:40:23,440
Speaker 14: researchers really don't want you to come, so maybe you

699
00:40:23,440 --> 00:40:26,719
Speaker 14: should wait until the next meeting. And we were like, well, no,

700
00:40:26,760 --> 00:40:29,040
Speaker 14: that's what you told us about the last meeting. You

701
00:40:29,080 --> 00:40:29,920
Speaker 14: told us to hold on.

702
00:40:30,760 --> 00:40:35,200
Speaker 1: And so act UP started organizing another direct action. This

703
00:40:35,239 --> 00:40:38,920
Speaker 1: one would be called storm the NIH. The plan was

704
00:40:38,960 --> 00:40:42,640
Speaker 1: for hundreds of protesters to flood Fauci's home turf and

705
00:40:42,719 --> 00:40:45,799
Speaker 1: demand more say in how the federal government set its

706
00:40:45,800 --> 00:40:49,480
Speaker 1: research priorities. The group wanted to give Fauci a chance

707
00:40:49,520 --> 00:40:52,680
Speaker 1: to respond to their demands before the protest actually happened,

708
00:40:53,440 --> 00:40:56,560
Speaker 1: so Mark Harrington arranged for a meeting along with another

709
00:40:56,600 --> 00:40:58,320
Speaker 1: act UP member, Peter Staley.

710
00:40:58,960 --> 00:41:03,160
Speaker 14: Peter had the bright idea of asking Fauci for a dinner.

711
00:41:06,000 --> 00:41:09,160
Speaker 1: Fauci invited the activists to the home of his deputy director,

712
00:41:09,400 --> 00:41:10,319
Speaker 1: doctor Jim Hill.

713
00:41:11,320 --> 00:41:14,680
Speaker 14: Doctor Jim Hill was a good host and cooked a

714
00:41:14,680 --> 00:41:18,439
Speaker 14: good chicken and port a nice glass of wine. And

715
00:41:18,480 --> 00:41:20,160
Speaker 14: at that time I was a chain smoker and he

716
00:41:20,200 --> 00:41:23,120
Speaker 14: allowed in chain smoking. It was crazy. We're in doctor

717
00:41:23,160 --> 00:41:26,799
Speaker 14: Hill's living room and Tony's like, so, why are you

718
00:41:26,800 --> 00:41:28,799
Speaker 14: guys here? What brings you down?

719
00:41:29,040 --> 00:41:32,560
Speaker 5: Mark Carrington and Peter Staley said, you know, we still

720
00:41:32,680 --> 00:41:36,160
Speaker 5: need more. We want more of the clinical trials, we

721
00:41:36,200 --> 00:41:39,759
Speaker 5: want more representation. You're doing great, we love you, but

722
00:41:39,920 --> 00:41:44,919
Speaker 5: we still are going to storm the NIH And I said,

723
00:41:44,920 --> 00:41:47,080
Speaker 5: oh my goodness, you know, be careful. That might put

724
00:41:47,160 --> 00:41:47,879
Speaker 5: us back a bit.

725
00:41:48,080 --> 00:41:51,359
Speaker 14: Tony's like, well, why we're talking. We've been talking for

726
00:41:51,400 --> 00:41:54,440
Speaker 14: months and Peter's like, yeah, but you haven't given in

727
00:41:55,000 --> 00:41:58,200
Speaker 14: to any of our demands since Parallel Track. You're not

728
00:41:58,280 --> 00:42:00,400
Speaker 14: letting people with AIDS and their allies to go to

729
00:42:00,440 --> 00:42:01,000
Speaker 14: those meetings.

730
00:42:01,160 --> 00:42:04,319
Speaker 5: He says, no, it's nothing personal against you, but we've

731
00:42:04,360 --> 00:42:07,399
Speaker 5: got to storm the NIH. We've got more that we've

732
00:42:07,400 --> 00:42:07,920
Speaker 5: got to do.

733
00:42:08,640 --> 00:42:10,319
Speaker 14: We were like, we'll call off the demo if you'd

734
00:42:10,400 --> 00:42:12,680
Speaker 14: given to all our demands, but for now, we're just

735
00:42:12,719 --> 00:42:13,440
Speaker 14: going to go forward.

736
00:42:14,000 --> 00:42:17,440
Speaker 1: Fauci did not give in to their demands. As much

737
00:42:17,480 --> 00:42:20,680
Speaker 1: as his relationship with the activists had deepened, they were

738
00:42:20,719 --> 00:42:22,920
Speaker 1: still on opposite sides of a line.

739
00:42:23,040 --> 00:42:27,840
Speaker 5: Even though we became colleagues and in some respects friends,

740
00:42:29,160 --> 00:42:33,880
Speaker 5: They would not let that relationship deter them from pushing

741
00:42:34,000 --> 00:42:37,720
Speaker 5: even more for what they felt they needed.

742
00:42:48,480 --> 00:42:51,920
Speaker 1: On the morning of May twenty first, nineteen ninety, activists

743
00:42:51,920 --> 00:42:55,600
Speaker 1: assembled at a metro station near the NIH. Then they

744
00:42:55,600 --> 00:42:59,200
Speaker 1: marched to campus, a quiet, leafy collection of brick buildings

745
00:42:59,200 --> 00:43:00,480
Speaker 1: and concrete office blocks.

746
00:43:01,200 --> 00:43:02,960
Speaker 2: People a night won't.

747
00:43:02,719 --> 00:43:05,440
Speaker 9: Be quiet, Oh my drugs treatment.

748
00:43:05,160 --> 00:43:06,200
Speaker 2: Or riot people.

749
00:43:06,640 --> 00:43:09,520
Speaker 1: At one point, an air horn started blasting every twelve

750
00:43:09,520 --> 00:43:12,799
Speaker 1: minutes as a memorial to all the people dying of

751
00:43:12,840 --> 00:43:21,640
Speaker 1: AIDS on a daily basis.

752
00:43:23,080 --> 00:43:24,640
Speaker 10: This isn't a syche of your molecule.

753
00:43:24,840 --> 00:43:27,399
Speaker 17: It's representing that there's treatments out there that the NIH

754
00:43:27,480 --> 00:43:28,600
Speaker 17: isn't testing. They're not testing.

755
00:43:28,680 --> 00:43:31,480
Speaker 1: This is Garan's Frankie Ruda in footage from the protest,

756
00:43:31,960 --> 00:43:32,759
Speaker 1: and there's a lot.

757
00:43:32,640 --> 00:43:34,480
Speaker 17: Of different treatments that they're not studying, and they're not

758
00:43:34,520 --> 00:43:37,439
Speaker 17: studying them in all populations when they are studying them.

759
00:43:37,640 --> 00:43:41,160
Speaker 1: Frankie Ruda did not hesitate to call Fauci out by name.

760
00:43:41,280 --> 00:43:42,560
Speaker 10: And that building down that way.

761
00:43:42,800 --> 00:43:45,040
Speaker 17: Dr Anthony Fauci and a lot of other hot shot

762
00:43:45,120 --> 00:43:48,320
Speaker 17: scientists are having conference deciding the research priorities for the

763
00:43:48,400 --> 00:43:51,799
Speaker 17: National Institutes of Valerine and Infectice Diseases. We're down here

764
00:43:51,840 --> 00:43:54,000
Speaker 17: because we think we should be deciding the research priorities

765
00:43:54,000 --> 00:43:56,120
Speaker 17: for the National Institute of Allergy and in Texted Diseases,

766
00:43:56,360 --> 00:43:58,280
Speaker 17: because these are the people who are literally the disease.

767
00:43:58,560 --> 00:44:00,279
Speaker 17: These are the people who know what's going on because

768
00:44:00,280 --> 00:44:02,839
Speaker 17: they're dealing with it every day. Those people don't they're

769
00:44:02,840 --> 00:44:04,719
Speaker 17: fascinated by this little buyers and they don't give a

770
00:44:04,760 --> 00:44:06,280
Speaker 17: fuck about the people who are living.

771
00:44:06,080 --> 00:44:06,760
Speaker 10: With thee.

772
00:44:08,400 --> 00:44:11,279
Speaker 17: For dying for right.

773
00:44:12,040 --> 00:44:14,520
Speaker 1: Frankie Ruda was not the only one at the protest

774
00:44:14,520 --> 00:44:18,080
Speaker 1: who took direct aim at Fauci. One guy carried a

775
00:44:18,120 --> 00:44:21,680
Speaker 1: sign that said doctor Fauci you are killing us. Another

776
00:44:21,840 --> 00:44:24,120
Speaker 1: said Anthony Fauci, I piss on you.

777
00:44:24,560 --> 00:44:27,840
Speaker 5: They had my head on a spike. It was it

778
00:44:27,920 --> 00:44:32,840
Speaker 5: was really very you know, in some respects poignant and moving,

779
00:44:32,920 --> 00:44:35,680
Speaker 5: in some respects almost entertaining.

780
00:44:36,800 --> 00:44:40,959
Speaker 1: Stormed the NIH encapsulated the inside outside strategy that act

781
00:44:41,040 --> 00:44:44,760
Speaker 1: up had now perfected. While some members worked on Fauci

782
00:44:44,840 --> 00:44:48,360
Speaker 1: and his colleagues from close range, others ratcheted up the

783
00:44:48,360 --> 00:44:52,160
Speaker 1: pressure publicly. In some cases it was the same activists

784
00:44:52,160 --> 00:44:52,959
Speaker 1: who were doing both.

785
00:44:55,760 --> 00:44:59,279
Speaker 5: Pete promised me Peter Staley that he was going to

786
00:44:59,280 --> 00:45:01,880
Speaker 5: be so outland thish he was going to get arrested.

787
00:45:03,080 --> 00:45:07,400
Speaker 5: And when when they finally did storm the NIH, he

788
00:45:07,560 --> 00:45:13,120
Speaker 5: climbed up on the overhanging panopy of my building and

789
00:45:13,200 --> 00:45:16,160
Speaker 5: I saw that the police was starting to get a

790
00:45:16,200 --> 00:45:20,279
Speaker 5: little rough, so they grabbed Peter. And I saw that,

791
00:45:20,400 --> 00:45:22,040
Speaker 5: and I was afraid they were going to hurt him,

792
00:45:22,560 --> 00:45:25,000
Speaker 5: so I ran down. I was looking at it out

793
00:45:25,040 --> 00:45:28,720
Speaker 5: my window, and I ran down to the ground floor,

794
00:45:28,840 --> 00:45:30,919
Speaker 5: and just as I got to the ground floor, Peter

795
00:45:31,120 --> 00:45:33,799
Speaker 5: was in handcuffs being led away by the police. And

796
00:45:33,880 --> 00:45:36,759
Speaker 5: Peter looked up and said, with a big smile in

797
00:45:36,800 --> 00:45:39,000
Speaker 5: his face, he said, see Tony, I told you I

798
00:45:39,040 --> 00:45:41,879
Speaker 5: was going to get arrested, and the police looked at

799
00:45:41,960 --> 00:45:45,319
Speaker 5: us like, of both of these guys crazy.

800
00:45:45,360 --> 00:45:45,959
Speaker 2: Here they are.

801
00:45:45,880 --> 00:45:48,560
Speaker 5: Storming the building and they look like they're good friends.

802
00:45:57,440 --> 00:46:01,000
Speaker 1: One month after storm the nih In Gue of nineteen ninety,

803
00:46:01,760 --> 00:46:04,960
Speaker 1: Anthony Fauci gave a speech at the sixth International AIDS

804
00:46:05,000 --> 00:46:06,360
Speaker 1: Conference in San Francisco.

805
00:46:06,680 --> 00:46:07,160
Speaker 10: It is a.

806
00:46:07,040 --> 00:46:09,840
Speaker 16: Distinct honor and a pleasure to participate in the closing

807
00:46:09,920 --> 00:46:13,680
Speaker 16: ceremonies of the sixth International Congress on AIDS and to

808
00:46:13,719 --> 00:46:16,240
Speaker 16: share with you my perspective on AIDS research.

809
00:46:16,680 --> 00:46:19,920
Speaker 1: Fauci spent much of his allotted time giving his perspective

810
00:46:19,960 --> 00:46:22,120
Speaker 1: on what the new decade would mean for the AIDS

811
00:46:22,120 --> 00:46:26,040
Speaker 1: epidemic projection. Then he turned his attention to the relationship

812
00:46:26,160 --> 00:46:31,720
Speaker 1: between scientists and activists. Activists bring a very special insight

813
00:46:31,920 --> 00:46:35,640
Speaker 1: into the way that we design our scientific approaches. Together,

814
00:46:35,680 --> 00:46:39,200
Speaker 1: we are a formidable force with a common goal. Fauci

815
00:46:39,280 --> 00:46:41,880
Speaker 1: wanted the activists and attendance to come away with a

816
00:46:41,960 --> 00:46:42,920
Speaker 1: clear message.

817
00:46:43,160 --> 00:46:46,160
Speaker 5: I don't agree with everything you're doing, but you need

818
00:46:46,200 --> 00:46:49,440
Speaker 5: to understand that we are all together in this. The

819
00:46:49,520 --> 00:46:54,040
Speaker 5: scientific community is not your enemy. The scientific community cares

820
00:46:54,080 --> 00:46:58,040
Speaker 5: about you. The scientific community has devoted everything that they

821
00:46:58,120 --> 00:47:02,000
Speaker 5: do to try and protect you and get your lives

822
00:47:02,560 --> 00:47:06,680
Speaker 5: back to some form of normality with the proper drugs.

823
00:47:06,719 --> 00:47:09,920
Speaker 5: And it was a real coming together of a realization

824
00:47:10,239 --> 00:47:12,040
Speaker 5: that we were all in this together.

825
00:47:12,920 --> 00:47:15,680
Speaker 16: This is the way we serve, but we must never

826
00:47:15,760 --> 00:47:18,279
Speaker 16: lose sight of the fact that the people whom we

827
00:47:18,360 --> 00:47:21,520
Speaker 16: serve are the HIV infected people throughout the world.

828
00:47:21,560 --> 00:47:21,880
Speaker 1: Thank you.

829
00:47:27,680 --> 00:47:30,799
Speaker 14: Basically, Fauci came up to us and he told us

830
00:47:30,800 --> 00:47:32,680
Speaker 14: that he was giving in to all of our demands,

831
00:47:33,360 --> 00:47:35,279
Speaker 14: and he was telling the researchers that they had to

832
00:47:35,320 --> 00:47:37,400
Speaker 14: do what we asked, and he followed up on that.

833
00:47:38,920 --> 00:47:41,600
Speaker 1: In the months after the conference, it was announced that

834
00:47:41,640 --> 00:47:44,480
Speaker 1: people with AIDS would finally be included in the clinical

835
00:47:44,520 --> 00:47:48,239
Speaker 1: trials group, positioning them to exert real influence on its

836
00:47:48,239 --> 00:47:52,239
Speaker 1: research agenda. Fauci had made good on his word.

837
00:47:52,640 --> 00:47:54,520
Speaker 14: So we got to see him at the height of

838
00:47:54,520 --> 00:47:59,560
Speaker 14: his defensiveness and we got to see him change and

839
00:47:59,600 --> 00:48:03,320
Speaker 14: that was a wonderful thing. And ever since then, people

840
00:48:03,320 --> 00:48:06,279
Speaker 14: with AIDS and their allies and advocates have been part

841
00:48:06,320 --> 00:48:10,600
Speaker 14: of the AIDS research clinical trials system and not just

842
00:48:10,680 --> 00:48:13,120
Speaker 14: beating up on the outside, but actually helping to shape

843
00:48:13,160 --> 00:48:17,480
Speaker 14: it from the inside.

844
00:48:17,520 --> 00:48:20,680
Speaker 1: Harrington's happiness wasn't shared by every member of act UP.

845
00:48:21,640 --> 00:48:25,120
Speaker 1: Sarah Schulman, for example, was unimpressed by how slowly Fauci

846
00:48:25,200 --> 00:48:28,120
Speaker 1: had come around and what it had taken to change

847
00:48:28,120 --> 00:48:28,560
Speaker 1: his mind.

848
00:48:29,200 --> 00:48:33,600
Speaker 3: He was brought around by a combination of pressure that

849
00:48:33,719 --> 00:48:37,440
Speaker 3: made him uncomfortable from people he did not understand, like

850
00:48:37,520 --> 00:48:43,600
Speaker 3: poor people or women, and a kind of collegiality from

851
00:48:43,840 --> 00:48:46,520
Speaker 3: a certain kind of man that he eventually was able

852
00:48:46,520 --> 00:48:47,440
Speaker 3: to identify with.

853
00:48:48,160 --> 00:48:51,680
Speaker 1: As Garantz Frankie Ruda told me, many people outside of

854
00:48:51,680 --> 00:48:54,480
Speaker 1: Treatment and Data were starting to get antsy about how

855
00:48:54,520 --> 00:48:56,880
Speaker 1: close some of their fellow activists were getting to the

856
00:48:56,880 --> 00:48:57,760
Speaker 1: people in power.

857
00:48:58,120 --> 00:49:02,360
Speaker 10: People started having arguments about whether or not to continue

858
00:49:02,400 --> 00:49:04,960
Speaker 10: meeting with scientists. There was a proposal for a moratorium

859
00:49:05,000 --> 00:49:07,480
Speaker 10: on meetings for six months, and I remember very vividly

860
00:49:07,520 --> 00:49:10,000
Speaker 10: being at the general meeting where that was discussed, where

861
00:49:10,000 --> 00:49:12,479
Speaker 10: someone got up and said, it's only for six months,

862
00:49:12,480 --> 00:49:14,319
Speaker 10: it's not like it's the rest of your life, and

863
00:49:14,360 --> 00:49:16,719
Speaker 10: someone else said, it might actually be the rest of

864
00:49:16,760 --> 00:49:18,000
Speaker 10: my life.

865
00:49:18,200 --> 00:49:21,200
Speaker 1: Meanwhile, some members of act UP had started conceiving of

866
00:49:21,239 --> 00:49:24,440
Speaker 1: the organization as being about more than just AIDS activism.

867
00:49:25,520 --> 00:49:28,000
Speaker 1: They wanted it to be a vehicle for upending the

868
00:49:28,160 --> 00:49:32,319
Speaker 1: entire American healthcare system and tackling what they considered to

869
00:49:32,320 --> 00:49:35,239
Speaker 1: be the broader systemic issues, of which AIDS was just

870
00:49:35,360 --> 00:49:36,160
Speaker 1: one component.

871
00:49:36,680 --> 00:49:39,400
Speaker 10: The question arose whether or not act UP was a

872
00:49:39,440 --> 00:49:42,719
Speaker 10: more general left wing group or whether it was specifically

873
00:49:42,719 --> 00:49:46,920
Speaker 10: an HIV organization. And that's I think where things started

874
00:49:46,920 --> 00:49:48,040
Speaker 10: to get tense.

875
00:49:49,480 --> 00:49:52,920
Speaker 1: Increasingly, treatment and data members felt like they were operating

876
00:49:52,960 --> 00:49:54,560
Speaker 1: independently of their colleagues.

877
00:49:55,200 --> 00:49:57,319
Speaker 14: Instead of, you know, going to demos, we were now

878
00:49:57,360 --> 00:50:00,480
Speaker 14: going to scientific meetings and helping to design produc calls,

879
00:50:01,400 --> 00:50:04,920
Speaker 14: and so the old famous inside outside strategy where you

880
00:50:04,960 --> 00:50:09,160
Speaker 14: negotiate but you also demonstrate. The balance became more going

881
00:50:09,239 --> 00:50:13,640
Speaker 14: to science meetings and less to demonstrations, and in retrospect,

882
00:50:13,680 --> 00:50:14,880
Speaker 14: dot created tension.

883
00:50:18,640 --> 00:50:21,760
Speaker 1: In the years since its founding, act UP had managed

884
00:50:21,800 --> 00:50:25,160
Speaker 1: to get a staggering number of their demands met. They

885
00:50:25,200 --> 00:50:27,840
Speaker 1: had won changes to the drug testing and approval process.

886
00:50:28,640 --> 00:50:30,680
Speaker 1: They had secured a seat at the table for people

887
00:50:30,680 --> 00:50:34,040
Speaker 1: with AIDS when it came to decision making around research funding.

888
00:50:34,960 --> 00:50:38,000
Speaker 1: They had secured compassionate use approval for drugs to treat

889
00:50:38,040 --> 00:50:43,200
Speaker 1: AIDS related blindness and numicistis pneumonia. Here again is Robert

890
00:50:43,239 --> 00:50:44,160
Speaker 1: Vasquez Pacheco.

891
00:50:44,920 --> 00:50:49,720
Speaker 6: We changed the ways research was done in the United

892
00:50:49,760 --> 00:50:55,200
Speaker 6: States and brought an element of compassion. I mean that

893
00:50:55,320 --> 00:50:58,800
Speaker 6: the process became humanized. We got drugs into bodies.

894
00:50:59,480 --> 00:51:02,560
Speaker 1: But despite their victories, everyone we talked to for this

895
00:51:02,640 --> 00:51:05,839
Speaker 1: episode was quick to temper their excitement about what act

896
00:51:05,920 --> 00:51:08,440
Speaker 1: UP had achieved. By the end of the nineteen eighties,

897
00:51:09,560 --> 00:51:12,440
Speaker 1: for all their efforts, there was still no drug that

898
00:51:12,480 --> 00:51:14,680
Speaker 1: could save people from dying of AIDS.

899
00:51:15,600 --> 00:51:18,160
Speaker 14: We began to realize that this thing of hoping for

900
00:51:18,360 --> 00:51:20,360
Speaker 14: like a magic bullet, that you know, we would all

901
00:51:20,440 --> 00:51:22,880
Speaker 14: be activists for two or three years, and then the

902
00:51:22,960 --> 00:51:24,799
Speaker 14: cure would come, the vaccine would come, and we would

903
00:51:24,800 --> 00:51:27,120
Speaker 14: all go back to our lives wasn't going to.

904
00:51:27,080 --> 00:51:30,799
Speaker 10: Happenzt forestalled things for a while for some who took

905
00:51:30,840 --> 00:51:32,560
Speaker 10: it and were able to take it and tolerate it.

906
00:51:32,960 --> 00:51:34,880
Speaker 10: Some people were able to get access to drugs that

907
00:51:34,920 --> 00:51:39,200
Speaker 10: prevented opportunistic infections, or they were just were lucky enough

908
00:51:39,200 --> 00:51:42,360
Speaker 10: to have immune systems that declined more slowly. But a

909
00:51:42,360 --> 00:51:44,080
Speaker 10: lot of people didn't, and just the pace of the

910
00:51:44,120 --> 00:51:44,879
Speaker 10: dying picked up.

911
00:51:45,440 --> 00:51:49,080
Speaker 6: This was an epidemic that kept growing, so it wasn't

912
00:51:49,120 --> 00:51:51,560
Speaker 6: as if it reached a plateau. We kept seeing more

913
00:51:51,680 --> 00:51:53,200
Speaker 6: and more people getting sick.

914
00:51:53,760 --> 00:51:57,720
Speaker 3: It was very hard to be so young and watch

915
00:51:57,760 --> 00:52:01,840
Speaker 3: your friends suffer and die on our regular basis aids

916
00:52:01,960 --> 00:52:05,239
Speaker 3: is a terrible death. And to watch people in their

917
00:52:05,239 --> 00:52:10,160
Speaker 3: twenties and thirties become demented and blind and covered in

918
00:52:11,000 --> 00:52:13,560
Speaker 3: skin cancer, I mean, it was horrible.

919
00:52:15,200 --> 00:52:19,040
Speaker 1: The group never completely folded, but around nineteen ninety one

920
00:52:19,400 --> 00:52:23,080
Speaker 1: a fallo period started, during which dozens, if not hundreds,

921
00:52:23,080 --> 00:52:27,240
Speaker 1: of act UP members burned out and quit. Robert Basquez

922
00:52:27,239 --> 00:52:30,319
Speaker 1: Pacheco moved to Philadelphia and tried to focus on his

923
00:52:30,360 --> 00:52:34,680
Speaker 1: own life. He still had faith that something eventually would work,

924
00:52:35,480 --> 00:52:37,680
Speaker 1: but he also thought about all the people, like his

925
00:52:37,719 --> 00:52:41,560
Speaker 1: boyfriend Jeff, who would already be gone when that day arrived.

926
00:52:41,960 --> 00:52:44,960
Speaker 6: And of course what struck me was, oh, God, you

927
00:52:45,000 --> 00:52:48,080
Speaker 6: know they're going to find something, and it's going to

928
00:52:48,120 --> 00:52:53,120
Speaker 6: be too late for so many people, for so many people.

929
00:53:23,360 --> 00:53:25,239
Speaker 10: Takes a few months.

930
00:53:25,280 --> 00:53:31,840
Speaker 2: But on Bones here for Strong, we tell all.

931
00:53:31,880 --> 00:53:39,200
Speaker 14: Our school friends a sign all the cast in the playground.

932
00:53:39,560 --> 00:53:42,840
Speaker 1: On the next episode of Fiasco, the Tide begins to

933
00:53:42,920 --> 00:53:46,680
Speaker 1: turn as a new class of drugs shows promise against HIV.

934
00:53:47,400 --> 00:53:49,959
Speaker 6: The fact that it happened in one patient it tells

935
00:53:50,000 --> 00:53:52,520
Speaker 6: us for the first time that it's actually possible.

936
00:53:53,680 --> 00:53:57,799
Speaker 1: Fiasco is presented by Audible Originals and Prologue Projects. The

937
00:53:57,840 --> 00:54:01,680
Speaker 1: show is produced by Andrew Parsons, Sam Graham Felson, Madeline Kaplan,

938
00:54:01,920 --> 00:54:06,920
Speaker 1: Ulla Kulpa, and me Leon Nafock. Our researcher is Francis Carr.

939
00:54:07,640 --> 00:54:12,280
Speaker 1: Editorial support from Jessica Miller and Norah Waswaz, Archival research

940
00:54:12,320 --> 00:54:17,560
Speaker 1: by Michelle Sullivan. This season's score is composed by Edith Mudge.

941
00:54:17,680 --> 00:54:20,960
Speaker 1: Additional music by Nick Sylvester of God Mode, Joel Saint,

942
00:54:21,040 --> 00:54:25,439
Speaker 1: Julian and Dan English, Noah Hackt, and Joe Valley. Our

943
00:54:25,480 --> 00:54:28,600
Speaker 1: theme song is by Spatial Relations. Our credit song this

944
00:54:28,640 --> 00:54:31,000
Speaker 1: week is the Place Where He Inserted the Blade by

945
00:54:31,040 --> 00:54:35,760
Speaker 1: Black Country New Road Music licensing courtesy of Anthony Roman.

946
00:54:36,480 --> 00:54:40,560
Speaker 1: Audio mixed by Erica Wong with additional support from Selina Urabe.

947
00:54:41,239 --> 00:54:44,080
Speaker 1: Our artwork is designed by Teddy Blanks at Chips and Y.

948
00:54:45,400 --> 00:54:48,160
Speaker 1: David Blum is the editor in chief of Audible Originals.

949
00:54:48,840 --> 00:54:52,520
Speaker 1: Mike Charzik is the vice president of Audible Studios. Zach

950
00:54:52,600 --> 00:54:56,280
Speaker 1: Ross is head of acquisition and development for Audible. Thanks

951
00:54:56,280 --> 00:54:59,160
Speaker 1: to Chris Roby, Susie Lichtenberg, and the team at Radio

952
00:54:59,239 --> 00:55:03,359
Speaker 1: Lab and Peter Yassi. Special thanks to David France, Bill

953
00:55:03,400 --> 00:55:06,280
Speaker 1: Balman and Thomas Knauglis for sharing with us the audio

954
00:55:06,320 --> 00:55:09,880
Speaker 1: of Fauci's meeting with act UP. Thank you for listening,

955
00:55:10,080 --> 00:55:12,320
Speaker 1: and see you back here next week for Episode seven.