WEBVTT - Episode 6: Drugs into Bodies 0:00:00.440 --> 0:00:03.000 Hey, this is Leon Napok. I'm the host of Fiasco, 0:00:03.240 --> 0:00:05.640 but you may also know me from the podcasts Slowburn, 0:00:05.840 --> 0:00:09.240 Think Twice, Michael Jackson, and Backfired the Vaping Wars. I'm 0:00:09.280 --> 0:00:11.880 excited to be sharing with you the next season of Backfired, 0:00:12.000 --> 0:00:15.960 titled Attention Deficit, which is now available exclusively on Audible. 0:00:16.800 --> 0:00:20.320 Backfired is a podcast about the business of unintended consequences. 0:00:20.840 --> 0:00:23.279 In the first season, my co host Ril Pardess and 0:00:23.320 --> 0:00:25.680 I dove deep into the world of vaping and how 0:00:25.680 --> 0:00:28.400 the well intentioned quest for a safer cigarette went awry. 0:00:28.960 --> 0:00:32.879 Now we're tackling ADHD and how the push to destigmatize 0:00:32.880 --> 0:00:35.879 this hard to define childhood diagnosis has led to an 0:00:35.920 --> 0:00:38.720 explosion of stimulant use in kids as well as adults. 0:00:39.000 --> 0:00:41.560 It's a story about the promise of psychiatry to fix 0:00:41.640 --> 0:00:44.640 our brains and the power of the pharmaceutical industry to 0:00:44.680 --> 0:00:47.600 shape how we and our doctors think about what's wrong 0:00:47.640 --> 0:00:50.239 with us. To hear both seasons of Backfired, go to 0:00:50.240 --> 0:00:53.600 audible dot com slash Backfired and start a free trial 0:00:54.040 --> 0:00:59.760 that's audible dot com slash Backfired. Fiasco is intended from 0:00:59.760 --> 0:01:03.760 a audiences for a list of books articles and documentaries 0:01:03.760 --> 0:01:06.200 we used in our research. Follow the link in the 0:01:06.200 --> 0:01:12.480 show notes previously on Fiasco. 0:01:13.760 --> 0:01:15.720 Everything I'm reading Everyone age dies. 0:01:16.200 --> 0:01:18.600 We had no other resources but ourselves. 0:01:18.840 --> 0:01:20.800 There was growing sentiment in the White House that Reagan 0:01:20.800 --> 0:01:23.160 should deliver a major address to the nation about AIDS. 0:01:23.280 --> 0:01:26.279 The President gave his first major speech on the subject tonight, 0:01:26.360 --> 0:01:28.360 one that drew both cheers and jeers. 0:01:28.720 --> 0:01:31.440 Demonstrators outside marched in memory of those who died of 0:01:31.480 --> 0:01:33.560 AIDS and called for more research money. 0:01:34.200 --> 0:01:34.880 We got them. 0:01:43.000 --> 0:01:47.280 Jeff died on February eleventh, nineteen eighty six. I remember 0:01:47.640 --> 0:01:50.240 it was the middle of a snowstorm, this huge blizzard 0:01:50.280 --> 0:01:56.680 in New York, and Jeff died in asleep, and I 0:01:56.760 --> 0:01:58.640 woke up in bed and found him dead next to me. 0:02:02.600 --> 0:02:06.040 Robert Vasquez Pacheco and his boyfriend Jeff lived together on 0:02:06.040 --> 0:02:10.120 the Upper West Side of Manhattan. Vasquet Pacheco was an artist. 0:02:10.639 --> 0:02:13.880 He was twenty nine when Jeff died. Jeff was thirty four. 0:02:14.720 --> 0:02:16.520 You know, I shocked. I was crying, and. 0:02:18.000 --> 0:02:22.880 I had quit smoking about a year before, and I 0:02:22.960 --> 0:02:23.840 was sitting on the bed. 0:02:23.960 --> 0:02:25.600 I was actually clutching his foot. 0:02:25.639 --> 0:02:28.079 I was sobbing, and I was holding his foot and 0:02:28.760 --> 0:02:30.720 I thought, you know what, I have to go get 0:02:30.720 --> 0:02:31.320 some cigarettes. 0:02:31.360 --> 0:02:34.400 I'm not going to get through this. I get cigarettes. 0:02:34.760 --> 0:02:37.639 And so I walked out of the apartment and walked 0:02:37.680 --> 0:02:42.920 into this blizzard. And as I walk out, I see 0:02:42.960 --> 0:02:46.880 people on Columbus Avenue on skis well, you know, going 0:02:46.960 --> 0:02:50.800 down Columbus Avenue, and I thought, this is too fucking surreal, 0:02:51.240 --> 0:02:53.720 and you know, picked up cigarettes and then came back 0:02:53.800 --> 0:02:55.960 up and then I called nine one one and my 0:02:55.960 --> 0:02:56.960 friends and everything else. 0:03:03.840 --> 0:03:06.600 Vasquez Pacheco had been taking care of Jeff for more 0:03:06.639 --> 0:03:09.440 than four years at this point. Jeff had gotten sick 0:03:09.480 --> 0:03:12.560 back in nineteen eighty one, before anyone knew what AIDS 0:03:12.760 --> 0:03:16.239 was or how it was spread. According to Vasquez Pacheco, 0:03:16.720 --> 0:03:19.600 even hospital staff treated Jeff like a pariah. 0:03:19.880 --> 0:03:21.880 So he would be in the hospital, they'd put him 0:03:21.919 --> 0:03:26.240 in an isolation room, and then the orderlies would leave 0:03:26.480 --> 0:03:29.200 trays the food for him on the floor outside of 0:03:29.240 --> 0:03:32.160 the room. And the fact that they couldn't even walk 0:03:32.200 --> 0:03:33.920 in to give him the food, but they left it 0:03:33.960 --> 0:03:37.360 out there without even notifying him that the meal had 0:03:37.400 --> 0:03:39.320 you know, it was horrible. So I saw the way 0:03:39.360 --> 0:03:43.480 he was treated by people that were supposed to be 0:03:43.520 --> 0:03:46.840 helping him. 0:03:46.920 --> 0:03:50.960 As Jeff underwent chemotherapy for his Capaci sarcoma, it was 0:03:51.080 --> 0:03:53.320 up to Vasquez Pacheco to keep him comfortable. 0:03:53.920 --> 0:03:56.480 We did a bunch of things. I got Jeff to 0:03:56.480 --> 0:04:01.240 get into acupuncture. I introduced Jeff to marijuana because he 0:04:01.320 --> 0:04:04.200 was on chemo. So it was all sort of a 0:04:04.240 --> 0:04:07.840 struggle to see how we could do this and how 0:04:07.840 --> 0:04:10.720 we could get through it and slowly start watching other 0:04:10.760 --> 0:04:11.880 people dealing with it. 0:04:13.600 --> 0:04:17.919 After Jeff died, fast Cast Pacheco wasn't just devastated, he 0:04:18.040 --> 0:04:19.719 was also furious. 0:04:20.560 --> 0:04:22.840 What I was left with was. 0:04:24.880 --> 0:04:32.240 Equal parts sadness, this profound sadness of this loss, and 0:04:32.440 --> 0:04:36.000 at the same time I was filled with this rage 0:04:36.240 --> 0:04:40.000 because you know, this upheaval in this community that was 0:04:40.080 --> 0:04:44.320 experienced so much loss, and it was so apparent, it 0:04:44.400 --> 0:04:47.720 was visible that what was happening, and people weren't doing anything, 0:04:47.720 --> 0:04:50.160 and people weren't saying anything, and people were ignoring it. 0:04:51.400 --> 0:04:54.640 So I was angry at everybody. 0:04:55.760 --> 0:04:59.240 In his grief, fastcast Pacheko joined what he described to 0:04:59.279 --> 0:05:01.520 me as a conscient business raising group for gay men. 0:05:02.600 --> 0:05:05.320 Their meetings took place at the Lesbian and Gay Community 0:05:05.360 --> 0:05:09.960 Center in the West Village. One night, Vasquez Pacheco and 0:05:10.000 --> 0:05:13.120 a friend were leaving the center after a meeting. As 0:05:13.160 --> 0:05:15.440 they made their way out of the building, they had 0:05:15.480 --> 0:05:17.880 to cut through a large room on the ground floor 0:05:18.080 --> 0:05:19.280 that was full of people. 0:05:20.000 --> 0:05:22.840 I said, look at the amount of cute guys in 0:05:22.880 --> 0:05:25.760 this room. What is this organization? 0:05:27.600 --> 0:05:29.520 And that's when we went, Oh, my god, it's an 0:05:29.520 --> 0:05:30.320 AIDS organization. 0:05:30.800 --> 0:05:34.320 The group called themselves the Aid's Coalition to Unleash Power, 0:05:34.880 --> 0:05:38.560 or act UP for short. They had started meeting in 0:05:38.600 --> 0:05:41.559 March of nineteen eighty seven after the activist and writer 0:05:41.680 --> 0:05:45.120 Larry Kramer gave an impassioned speech at the center calling 0:05:45.160 --> 0:05:49.839 for the establishment of a radical new AIDS organization. Ever since, 0:05:50.160 --> 0:05:52.240 the group had been getting together at the Lesbian and 0:05:52.240 --> 0:05:57.960 Gay Community Center every Monday night. There was no official hierarchy. Instead, 0:05:58.160 --> 0:06:00.760 the hundreds of people who showed up tried their best 0:06:00.920 --> 0:06:09.080 to think and act as one. When Robert Vasquez Pacheco 0:06:09.240 --> 0:06:12.680 passed through that act UP meeting, he saw a room 0:06:12.720 --> 0:06:16.200 of people who seemed to be doing something about AIDS, and, 0:06:16.279 --> 0:06:19.640 with Jeff's death still fresh in his mind, he decided 0:06:19.680 --> 0:06:21.600 to join them. 0:06:21.920 --> 0:06:25.359 I was angry, I was pissed. My lover had just died. 0:06:25.520 --> 0:06:30.040 I was pissed, and I wanted someone to answer for it. 0:06:32.040 --> 0:06:35.680 And I found a group of like minded men who 0:06:35.720 --> 0:06:37.400 were just as pissed. 0:06:37.120 --> 0:06:37.599 As I was. 0:06:39.279 --> 0:06:44.080 I'm Leon Navak from Audible Originals. In prologue projects This 0:06:44.320 --> 0:06:45.000 is Fiasco. 0:06:45.720 --> 0:06:48.480 Angry demonstrators managed to close down the Food and Drug 0:06:48.480 --> 0:06:49.880 Administration today As. 0:06:49.720 --> 0:06:51.760 Fast as they could take one group off the streets, 0:06:51.920 --> 0:06:53.159 another group sat down. 0:06:53.279 --> 0:06:55.880 They had signs, you know, fauci, you're killing us. 0:06:56.080 --> 0:06:58.880 You just say let the drug out, then disasters can occur. 0:06:59.000 --> 0:07:00.960 Drug sent about asis? What was the tance of living? 0:07:01.400 --> 0:07:06.320 People need medication now, ten years from now they'll be dead. 0:07:09.200 --> 0:07:12.920 In this episode, how act Up confronted the medical establishment 0:07:13.240 --> 0:07:24.840 and demanded an urgent response to the AIDS crisis. The 0:07:24.920 --> 0:07:27.920 problem that act UP was created to solve was that 0:07:28.080 --> 0:07:31.640 six long years into the epidemic, there was still pretty 0:07:31.680 --> 0:07:34.360 much nothing that doctors could do for people who had 0:07:34.360 --> 0:07:35.480 AIDS or HIV. 0:07:36.080 --> 0:07:38.120 At the beginning, people with AIDS had no treatments, no 0:07:38.200 --> 0:07:39.040 matter who they were. 0:07:39.840 --> 0:07:42.440 This is Sarah Schulman, a member of act UP and 0:07:42.480 --> 0:07:45.040 the author of Let the Record Show, A History of 0:07:45.080 --> 0:07:45.800 the organization. 0:07:46.440 --> 0:07:49.520 You could be Rock Hudson with access to the White 0:07:49.520 --> 0:07:52.120 House and endless money, and you're still going to suffer 0:07:52.160 --> 0:07:55.720 and die. Or you could be a homeless person using 0:07:55.800 --> 0:07:58.680 drugs and you are still going to suffer and die. 0:07:59.280 --> 0:08:02.480 When HIV V was first identified in nineteen eighty four, 0:08:03.280 --> 0:08:06.880 many believed that scientists would develop a vaccine fairly quickly, 0:08:07.320 --> 0:08:09.880 the same way they had for other deadly viruses. 0:08:10.280 --> 0:08:12.720 The government says it hopes to develop a vaccine to 0:08:12.800 --> 0:08:13.480 prevent AIDS. 0:08:13.640 --> 0:08:16.840 Development of a vaccine is at least two years away. 0:08:16.760 --> 0:08:21.640 But HIV proved to be uniquely complicated, as scientists would 0:08:21.680 --> 0:08:25.200 later show the virus had the highest mutation rate of 0:08:25.320 --> 0:08:29.720 any organism on record, which made an easy vaccine impossible. 0:08:30.120 --> 0:08:33.360 Doctors still have no way of fighting AIDS. That means 0:08:33.400 --> 0:08:35.800 all they can do is hope they'll eventually find something 0:08:35.920 --> 0:08:38.720 or some combination of things that will stomp the disease 0:08:38.760 --> 0:08:39.480 in its tracks. 0:08:40.000 --> 0:08:42.960 In the absence of a vaccine, scientists had to think 0:08:42.960 --> 0:08:46.360 of other ways to attack the virus. In the meantime, 0:08:46.440 --> 0:08:49.559 people with AIDS resorted to home remedies like capsules of 0:08:49.600 --> 0:08:54.560 powdered garlic, chautaqi mushrooms, and tree SAP. Then, in nineteen 0:08:54.640 --> 0:08:58.640 eighty five, one pharmaceutical company started testing an AIDS drug 0:08:58.720 --> 0:09:04.240 that showed promise in earth early human trials. The drug 0:09:04.360 --> 0:09:07.640 was called AZT. It was originally developed back in the 0:09:07.720 --> 0:09:12.280 nineteen sixties as a cancer treatment, and like many chemotherapy drugs, 0:09:12.520 --> 0:09:16.200 it acted broadly on the body, destroying a variety of cells, 0:09:16.800 --> 0:09:20.000 not just the ones it was meant to target. The 0:09:20.120 --> 0:09:22.960 drug had been shelved by its manufacturer because it turned 0:09:23.000 --> 0:09:26.520 out to be far too toxic for patients, but in 0:09:26.559 --> 0:09:30.680 people with AIDS, AZT appeared to slow the progress of 0:09:30.720 --> 0:09:31.240 the disease. 0:09:31.840 --> 0:09:34.760 What we hope to do is to suppress the virus 0:09:35.280 --> 0:09:37.240 enough that we may attain every mission. 0:09:37.520 --> 0:09:40.240 I was very excited about the hope of getting something 0:09:40.280 --> 0:09:42.760 that would help you maintain myself a little bit longer. 0:09:43.440 --> 0:09:46.600 AZT was the first sign of hope that AIDS could 0:09:46.600 --> 0:09:49.520 be thwarted through medicine, and while no one was calling 0:09:49.559 --> 0:09:52.880 it a cure, people allowed themselves to be optimistic. 0:09:53.320 --> 0:09:55.960 Marty is one of two hundred and sixty patients in 0:09:56.000 --> 0:09:59.959 a nationwide study of a drug known as AZT. 0:10:00.160 --> 0:10:01.840 Very good when I came into the study, I feel 0:10:02.000 --> 0:10:03.200 very good now. 0:10:03.320 --> 0:10:05.280 Whatever it is is working. 0:10:05.040 --> 0:10:08.360 For three but the side effects of AZT were brutal. 0:10:09.440 --> 0:10:14.080 People participating in trials of the drug complained of fevers, migraine, headaches, 0:10:14.200 --> 0:10:19.200 abdominal pain, and nausea. Almost half showed depleted bone marrow cells, 0:10:19.880 --> 0:10:25.959 a majority developed anemia, and some required multiple blood transfusions. Still, 0:10:26.200 --> 0:10:29.520 the early results on AZT looked promising enough that the 0:10:29.559 --> 0:10:33.800 company producing it, Burrows Welcome, ended its clinical trials early, 0:10:34.520 --> 0:10:37.599 and in nineteen eighty six, the FDA fast tracked the 0:10:37.679 --> 0:10:41.600 drug's release to the public. The cost of AZT was 0:10:41.640 --> 0:10:45.400 set at around ten thousand dollars a year, which at 0:10:45.400 --> 0:10:48.640 the time made it the most expensive drug ever brought 0:10:48.679 --> 0:10:49.240 to market. 0:10:49.360 --> 0:10:52.400 The drug has serious side effects and it is expensive, 0:10:52.760 --> 0:10:55.480 but in announcing its release today, the Department of Health 0:10:55.480 --> 0:10:57.960 and Human Services called it an important step. 0:10:59.040 --> 0:11:02.400 It so happened that AZT was approved right as act 0:11:02.440 --> 0:11:06.000 UP was starting to take shape. From the beginning, members 0:11:06.000 --> 0:11:09.120 of the organization were clear that, no matter how promising 0:11:09.160 --> 0:11:12.240 the drug looked, they did not believe it would be enough. 0:11:13.360 --> 0:11:14.560 Sarah Schulman again. 0:11:14.760 --> 0:11:19.080 The general tenor was that AZT was not the solution. 0:11:19.800 --> 0:11:24.199 I think people thought that in certain quantities in combination 0:11:24.400 --> 0:11:27.360 with other treatments, it could be beneficial for a certain 0:11:27.360 --> 0:11:33.400 period of time, but AZT alone and especially at these 0:11:33.480 --> 0:11:37.079 high doses, was not going to do what it claim 0:11:37.160 --> 0:11:37.480 to do. 0:11:39.320 --> 0:11:42.880 At actup's first ever public protest, the group gathered on 0:11:42.920 --> 0:11:46.000 Wall Street, where they condemned the exorbitant cost of AZT 0:11:46.600 --> 0:11:53.760 and accused its manufacture of profiteering. Direct actions like the 0:11:53.760 --> 0:11:57.160 Wall Street protest were at the core of actup's methodology. 0:11:58.000 --> 0:12:01.000 They were usually staged with a kind of theatre flourish, 0:12:01.280 --> 0:12:03.400 and they were almost always tied to a set of 0:12:03.440 --> 0:12:12.480 specific demands. Mark Harrington saw a flyer for ACKed UP 0:12:12.559 --> 0:12:16.080 about a year after that first protest. It was nineteen 0:12:16.120 --> 0:12:18.920 eighty eight and Harrington was working part time at a 0:12:18.920 --> 0:12:20.240 film archive in Chelsea. 0:12:20.720 --> 0:12:24.400 I was young and curious and fascinated and worried and 0:12:24.600 --> 0:12:28.120 terrified and wanted to learn everything I could, And so 0:12:28.280 --> 0:12:31.240 one Monday night I went to the act UP meeting 0:12:31.240 --> 0:12:33.240 in the West Village, which was held every Monday at 0:12:33.320 --> 0:12:38.320 seven o'clock, and I was just immediately overwhelmed by the beautiful, 0:12:38.920 --> 0:12:43.280 powerful energy and solidarity and love in the room from 0:12:44.240 --> 0:12:47.840 several generations of gay men, many lesbians, a lot of 0:12:47.840 --> 0:12:51.959 straight women and very few of any straight men. 0:12:53.160 --> 0:12:56.199 By the time Harrington joined Act Up, the group had 0:12:56.240 --> 0:12:59.720 already worked out a highly disciplined approach to staging protests. 0:13:00.720 --> 0:13:03.760 One of their strategies was to get arrested in predetermined waves, 0:13:04.320 --> 0:13:07.160 so that once the police rounded up one group of activists, 0:13:07.520 --> 0:13:11.000 another would fill the gap, and then another one after that. 0:13:11.880 --> 0:13:15.560 It meant the action would last longer and hopefully attract 0:13:15.600 --> 0:13:22.120 more attention. In March of nineteen eighty eight, Act Up 0:13:22.280 --> 0:13:25.000 organized an action on Wall Street to mark the group's 0:13:25.040 --> 0:13:38.120 first anniversary. Harrington joined Wave three as a trainee. 0:13:34.960 --> 0:13:37.120 And we all sat down in an intersection in block 0:13:37.160 --> 0:13:42.240 traffic for at least an hour, chanting and waving condoms 0:13:42.280 --> 0:13:42.720 in the air. 0:13:42.800 --> 0:13:47.120 And I have been ignoring us all these years, and 0:13:47.160 --> 0:13:50.720 the only way you get attention from them is to 0:13:50.960 --> 0:13:53.800 hit them where it hurts, and in New York City, 0:13:53.840 --> 0:13:55.160 of course, traffic hurts. 0:13:56.120 --> 0:14:00.280 I got arrested along with my fellow trainees, and we 0:14:00.280 --> 0:14:02.000 were off to the races. 0:14:03.120 --> 0:14:03.960 As fast as they could. 0:14:03.960 --> 0:14:06.720 Take one group off the streets, another group sat down. 0:14:08.720 --> 0:14:11.640 When it was over, one hundred and five age demonstrators 0:14:11.679 --> 0:14:13.040 took their curtain calls. 0:14:12.800 --> 0:14:13.920 And police buses on. 0:14:13.920 --> 0:14:19.960 The way to jail, and so I was instantly hooked. 0:14:28.480 --> 0:14:31.280 While protests like the Wall Street Action began to give 0:14:31.400 --> 0:14:35.680 act UP a public profile, members working behind closed doors 0:14:35.720 --> 0:14:40.240 put just as much effort into something less spectacular, educating 0:14:40.280 --> 0:14:43.960 themselves and each other. Sarah Schulman again. 0:14:44.000 --> 0:14:45.840 When you would come into the meeting room, the first 0:14:45.880 --> 0:14:48.760 thing you did was pass along the table and it 0:14:48.760 --> 0:14:52.640 would be filled with handouts about all kinds of things, 0:14:52.680 --> 0:15:02.320 about new medical investigations, about policies, about housing legislation, communications 0:15:02.320 --> 0:15:07.320 from incarcerated people with AIDS, issues about mothers, I mean, 0:15:07.440 --> 0:15:10.280 all kinds of information, and you would pick up every flyer. 0:15:11.120 --> 0:15:13.760 Act up's philosophy was that people with AIDS and their 0:15:13.800 --> 0:15:17.800 allies needed an intimate understanding of what AIDS was, what 0:15:18.000 --> 0:15:20.000 was being done about it, and what wasn't. 0:15:20.680 --> 0:15:25.880 There were regular teachings that you could attend. Whatever it 0:15:26.000 --> 0:15:28.200 was that you wanted to find out about, you could 0:15:28.200 --> 0:15:31.000 go to a teaching and the people who were experts 0:15:31.040 --> 0:15:34.120 would give you information to read and they would explain 0:15:34.200 --> 0:15:34.840 the basics. 0:15:35.480 --> 0:15:39.040 Mark Harrington, a self proclaimed science nerd, was drawn to 0:15:39.080 --> 0:15:41.800 a study group organized by a subcommittee of act UP 0:15:42.000 --> 0:15:43.440 called Treatment and Data. 0:15:44.000 --> 0:15:45.760 It was a small group of people that was led 0:15:45.800 --> 0:15:49.160 by a pharmaceutical chemist named doctor iris Long, who had 0:15:49.680 --> 0:15:52.480 somewhat randomly come across an act UP meeting and became 0:15:52.560 --> 0:15:56.600 inspired by the issue and apply to her pharmaceutical knowledge 0:15:56.680 --> 0:16:00.840 to helping us understand pharmacology and drug trials. 0:16:01.360 --> 0:16:04.560 With guidance from iris Long, members of Treatment and Data 0:16:04.600 --> 0:16:08.080 started learning about the drug development process and formulating new 0:16:08.160 --> 0:16:11.640 questions about which drugs were being tested and how they were, 0:16:11.720 --> 0:16:14.080 essentially becoming amateur scientists. 0:16:16.760 --> 0:16:19.600 More than eighty AIDS treatments are being tested in about 0:16:19.600 --> 0:16:22.000 one hundred and fifty studies in the US, according to 0:16:22.040 --> 0:16:24.840 the FDA, and did several of these drugs that AIDS 0:16:24.920 --> 0:16:26.800 activists want Immediate access to. 0:16:27.320 --> 0:16:30.560 The process for testing and approving potential new therapies for 0:16:30.640 --> 0:16:34.800 AIDS ran through two parts of the federal bureaucracy. The 0:16:34.880 --> 0:16:38.400 drug approval process was handled by the Food and Drug Administration, 0:16:39.080 --> 0:16:41.560 where they reviewed drugs after they had gone through test 0:16:41.560 --> 0:16:45.400 tube and animal studies. If the FDA gave the green light, 0:16:45.960 --> 0:16:49.160 a drug could move into clinical trials in humans. 0:16:48.960 --> 0:16:53.280 After minimal study animal studies. The normal FDA approval process 0:16:53.320 --> 0:16:56.960 has three phases. Phase three averages four years. The whole 0:16:57.000 --> 0:17:00.000 process can take from two to ten years, more than eight. 0:17:00.160 --> 0:17:04.040 So that was the FDA. The other major component of 0:17:04.119 --> 0:17:07.879 the drug development bureaucracy was the National Institutes of Health 0:17:08.359 --> 0:17:11.800 the NIH, a sprawling agency made up of more than 0:17:11.840 --> 0:17:16.040 two dozen federally funded research hubs. The part of NIH 0:17:16.160 --> 0:17:19.919 responsible for developing new AIDS treatments was the National Institute 0:17:20.000 --> 0:17:21.800 for Allergy and Infectious Disease. 0:17:22.280 --> 0:17:25.119 We turned now to the man who oversees all AIDS 0:17:25.200 --> 0:17:27.240 treatment research for the federal government. 0:17:27.520 --> 0:17:30.560 The government official running this institute during the late nineteen 0:17:30.600 --> 0:17:33.320 eighties was the same one who runs it today. 0:17:33.960 --> 0:17:37.760 He is doctor Anthony Fauci, director of the National Institute 0:17:37.800 --> 0:17:40.200 of Allergy and Infectious Disease, a. 0:17:40.200 --> 0:17:43.040 Division of the National Mark Harrington, through his work with 0:17:43.160 --> 0:17:45.840 act UP, would come to know Fauci personally. 0:17:46.560 --> 0:17:50.160 Tony took the HELM as the AIDS crisis was deepening, 0:17:50.800 --> 0:17:53.600 and right as Congress began turning on the spigots of 0:17:53.640 --> 0:17:55.840 money for AIDS research at the NIH. 0:17:56.160 --> 0:17:58.600 It was under pressure from Fauci that the White House 0:17:58.600 --> 0:18:01.800 agreed in nineteen eighty six to give the NAH around 0:18:01.800 --> 0:18:06.000 three hundred million dollars in AIDS funding. With that money, 0:18:06.440 --> 0:18:09.560 Fauci was able to initiate research on several new drugs, 0:18:09.800 --> 0:18:10.800 including AZT. 0:18:11.640 --> 0:18:15.439 At that point, I set up drug discovery units. I 0:18:15.520 --> 0:18:20.000 began to build the clinical trial network. 0:18:20.800 --> 0:18:23.200 This is Fauci in an interview we did with him 0:18:23.280 --> 0:18:24.000 this winter. 0:18:24.560 --> 0:18:29.919 Subsequent to that first initial infusion of money that we got. 0:18:30.440 --> 0:18:33.160 The big challenge was going from a disease in which 0:18:33.200 --> 0:18:38.240 you had no treatments at all except treating oppotunistic infections 0:18:38.800 --> 0:18:42.360 and tumb is to being able to directly treat the virus. 0:18:43.480 --> 0:18:46.320 It's important to remember that at this time there was 0:18:46.400 --> 0:18:49.639 no such thing as an emergency use authorization for a 0:18:49.720 --> 0:18:53.920 drug the way there is now. So for a desperate population, 0:18:54.640 --> 0:18:58.520 early clinical trials like the ones Fauci was overseeing were 0:18:58.560 --> 0:19:02.440 the only way to get act to AIDS drugs, even 0:19:02.440 --> 0:19:05.679 if they weren't yet proven to work. Many felt that 0:19:05.760 --> 0:19:09.240 taking them was still better than doing nothing. But as 0:19:09.280 --> 0:19:13.080 Mark Harrington and his peers saw firsthand, getting into the 0:19:13.160 --> 0:19:16.600 trials was complicated, and some people were shut out of 0:19:16.640 --> 0:19:17.480 them entirely. 0:19:18.119 --> 0:19:21.600 We would sometimes go to a hospital where a doctor 0:19:21.680 --> 0:19:23.800 was running a clinical trial and demand to speak to 0:19:23.840 --> 0:19:26.000 him and try to find out why nobody was enrolling 0:19:26.040 --> 0:19:29.119 in his clinical trial because nobody knew about it and 0:19:29.359 --> 0:19:33.200 its INTR criteria excluded people with a lot of AIDS 0:19:33.200 --> 0:19:34.159 defining conditions. 0:19:36.160 --> 0:19:39.960 To understand why certain people were excluded from drug trials, 0:19:40.480 --> 0:19:43.120 it helps to remember that AIDS is an umbrella term 0:19:43.320 --> 0:19:45.959 for a variety of conditions that stem from the immune 0:19:45.960 --> 0:19:51.320 system being destroyed by HIV. Different people experience different AIDS 0:19:51.320 --> 0:19:56.200 defining conditions. Some of them you've heard about, like CAPESI sarcoma, 0:19:56.240 --> 0:20:00.560 and numicistas pneumonia, but there are dozens of others, and 0:20:00.600 --> 0:20:04.280 as Sarah Schulman told me, some AIDS defining conditions that 0:20:04.320 --> 0:20:08.479 occurred primarily in women weren't included for years in the 0:20:08.480 --> 0:20:11.040 CDC's official definition of the disease. 0:20:11.640 --> 0:20:16.120 The government had an official definition of AIDS that listed 0:20:16.160 --> 0:20:18.920 what symptoms you had to have in order to get 0:20:18.920 --> 0:20:23.200 an aid's diagnosis, and women were getting symptoms that were 0:20:23.240 --> 0:20:27.639 not on the list, so that women were getting AIDS 0:20:27.720 --> 0:20:32.919 and dying and never qualifying for benefits and not getting 0:20:32.960 --> 0:20:37.160 access to experimental treatments. If women couldn't get into the trials, 0:20:37.200 --> 0:20:39.639 the medication could ever be tested on them. 0:20:40.040 --> 0:20:43.680 In practice, drug trials were mostly populated by white men 0:20:44.000 --> 0:20:47.600 and few, if any women or people of color. On 0:20:47.680 --> 0:20:51.480 top of that, participating in a clinical trial often required 0:20:51.520 --> 0:20:54.320 patients to give up the medications they were already using 0:20:54.400 --> 0:20:55.560 to treat their symptoms. 0:20:56.080 --> 0:20:58.199 In some trials, people were asked to give up a 0:20:58.280 --> 0:21:01.640 medication that kept them from going so that they could 0:21:01.680 --> 0:21:04.639 get a medication that would keep them from getting demented. 0:21:05.080 --> 0:21:07.159 Like human beings, should not be put in a position 0:21:07.240 --> 0:21:09.479 to have to make decisions like that so that science 0:21:09.520 --> 0:21:12.520 can have clean data. 0:21:12.000 --> 0:21:14.359 In a vacuum. It makes sense to want to test 0:21:14.400 --> 0:21:17.520 a drug under conditions that allow you to isolate its effect. 0:21:18.520 --> 0:21:22.240 Any extra variable or interference from other treatments can make 0:21:22.320 --> 0:21:24.080 it harder to achieve that ideal. 0:21:25.240 --> 0:21:31.720 Generally, the strict protocols that had been serving the biomedical 0:21:31.880 --> 0:21:36.040 and clinical research community well for decades of having highly 0:21:36.080 --> 0:21:41.159 controlled clinical trials, which now retrospectively, we see that it 0:21:41.280 --> 0:21:48.760 was not ideally suited to the very special circumstances of HIV. 0:21:51.800 --> 0:21:54.760 Fauci, who was never press shy, became the face of 0:21:54.800 --> 0:21:59.400 the federal government's efforts on AIDS. This meant answering charges 0:21:59.440 --> 0:22:03.360 that he and agency we're moving too slowly. Here's Fauci 0:22:03.400 --> 0:22:06.240 being interviewed on PBS in nineteen eighty six. 0:22:06.960 --> 0:22:11.000 Do you ever have any feelings of remorse of regret 0:22:11.040 --> 0:22:12.760 that the system works the way it does. 0:22:13.080 --> 0:22:15.359 It certainly is very difficult to see so many young 0:22:15.400 --> 0:22:17.440 men suffer and die when we don't have a treatment. 0:22:17.520 --> 0:22:22.080 That is the most powerful impetus for us. As contradictory 0:22:22.080 --> 0:22:25.080 as it made sound to do the study in as 0:22:25.160 --> 0:22:28.080 scientifically a sound way as possible, so. 0:22:28.080 --> 0:22:30.840 That Fauci tried to explain that there were good reasons 0:22:30.880 --> 0:22:33.000 the system was set up the way. It was really 0:22:33.080 --> 0:22:36.560 concerned that if scientists started cutting corners and rushing drugs 0:22:36.600 --> 0:22:39.960 to market that hadn't been rigorously tested, it would only 0:22:40.080 --> 0:22:40.920 make things worse. 0:22:41.280 --> 0:22:44.480 Because trying at this point to say, well, we're really 0:22:44.480 --> 0:22:46.920 concerned about the patients who have the disease, now which 0:22:46.960 --> 0:22:50.560 we are in fact quite concerned, let's modify the scientific 0:22:50.600 --> 0:22:54.040 integrity of the study. The real shame and tragedy will 0:22:54.080 --> 0:22:57.440 be five years down the pike if because of that compromwise, 0:22:57.640 --> 0:23:00.639 we still don't have an agent that's safe and effectively 0:23:00.680 --> 0:23:03.600 because we compromised our method of testing it, that would 0:23:03.600 --> 0:23:05.199 be the real tragedy. 0:23:05.640 --> 0:23:10.159 Robert Vasquez Pacheco saw a different tragedy. To him, it 0:23:10.240 --> 0:23:12.959 appeared the system just wasn't set up to deal with 0:23:13.000 --> 0:23:16.639 a new disease that gave most people just eighteen months 0:23:16.720 --> 0:23:17.080 to live. 0:23:17.840 --> 0:23:21.680 The reality was that the drug approval process could take 0:23:21.880 --> 0:23:26.439 upwards of fifteen years, and so we said, you guys 0:23:26.560 --> 0:23:28.800 have to change that process. 0:23:29.840 --> 0:23:32.199 People need medication. 0:23:32.440 --> 0:23:37.320 Now now, not ten years from now. 0:23:37.400 --> 0:23:38.119 They'll be dead. 0:23:46.359 --> 0:23:48.680 Members of act UP had come to believe there were 0:23:48.720 --> 0:23:52.800 fundamental problems with the drug development process. In the fall 0:23:52.880 --> 0:23:56.159 of nineteen eighty eight, they channeled their outrage into their 0:23:56.200 --> 0:23:58.240 biggest public action yet, and. 0:23:58.240 --> 0:24:00.040 So ACTUP was trying to figure out what kind of 0:24:00.119 --> 0:24:03.280 national action we wanted to do to kind of heighten 0:24:03.320 --> 0:24:05.280 our message in whether it should be like, say, at 0:24:05.280 --> 0:24:08.680 the White House or at the mall or somewhere else. 0:24:09.040 --> 0:24:09.240 Now. 0:24:09.400 --> 0:24:14.679 Historically, progressive movements had always chosen symbolic objects like the 0:24:14.680 --> 0:24:17.520 White House or the Capitol, but in this case, one 0:24:17.560 --> 0:24:22.080 of actup's leaders realized that we should be picking actual obstacles, 0:24:22.200 --> 0:24:27.159 not symbolic ones, and propose that the action be in Rockville, Maryland, 0:24:27.359 --> 0:24:31.440 at the FDA. 0:24:31.640 --> 0:24:35.080 On October eleventh, nineteen eighty eight, more than a thousand 0:24:35.119 --> 0:24:38.760 act UP members arrived at the FDA's campus in Rockville, Maryland. 0:24:39.680 --> 0:24:42.879 Many carried signs in the shape of tombstones decorated with 0:24:42.920 --> 0:24:47.000 phrases like azy T Isn't enough and killed by the FDA. 0:24:48.280 --> 0:24:49.399 Thank you all for coming. 0:24:49.440 --> 0:24:52.919 You are witnessing the largest demonstration ever in front of 0:24:52.960 --> 0:24:54.600 the Food and Drug Administration. 0:24:55.359 --> 0:24:59.080 Some protesters came wearing white lab coats and gloves covered 0:24:59.119 --> 0:25:02.679 in red paint to symbolize that the FDA had blood 0:25:02.720 --> 0:25:10.400 on its hands. The national media sent reporters to Rockville 0:25:10.480 --> 0:25:12.120 to witness act up in action. 0:25:12.600 --> 0:25:15.679 Ronald Reagan was hoisted in effigy this morning as hundreds 0:25:15.720 --> 0:25:18.760 of AIDS activists descended on the Food and Drug Administration, 0:25:19.040 --> 0:25:22.760 determined to shut it down the charge that while people 0:25:22.800 --> 0:25:27.399 are dying, FDA delays the demand that the FDA speed 0:25:27.480 --> 0:25:30.720 up approval of drugs that show any promise against AIDS. 0:25:31.359 --> 0:25:34.960 Robert Vasquez Pacheco was at the protest serving as a marshal, 0:25:35.520 --> 0:25:36.800 a peacekeeper essentially. 0:25:37.320 --> 0:25:39.320 So marshals were the ones who were in charge of 0:25:39.359 --> 0:25:43.200 sort of crowd safety. You would be patrolling the lines 0:25:43.240 --> 0:25:46.199 to make sure that people were keeping calm, or like 0:25:46.359 --> 0:25:49.240 please do not go up into the cops face, you know, 0:25:49.320 --> 0:25:50.600 and scream at him. 0:25:50.880 --> 0:25:53.639 There were about three hundred and fifty police officers on 0:25:53.680 --> 0:25:56.280 the scene. Basquez Pacheco was wary. 0:25:56.640 --> 0:25:56.840 Well. 0:25:56.840 --> 0:25:59.560 I had told people I do not get arrested at demonstrations. 0:26:00.119 --> 0:26:03.680 I said, I am a Puerto Rican. We disappear into 0:26:03.720 --> 0:26:07.960 the prison system, you know, so I am not going 0:26:08.040 --> 0:26:16.320 to get arrested. Someone got a little carried away with 0:26:16.320 --> 0:26:18.800 themselves and broke a door, a glass door, trying to 0:26:18.840 --> 0:26:22.680 get in, and immediately the cops descended on it. Of course, 0:26:22.720 --> 0:26:25.800 myself and some marshalls showed up, you know as well 0:26:25.840 --> 0:26:28.480 to like, okay, pull people back, you know, keep people safe, 0:26:28.720 --> 0:26:31.800 pull people back, and the cops, you know, just started 0:26:31.880 --> 0:26:34.040 arresting people. And I remember what cop just looked at 0:26:34.160 --> 0:26:37.280 looked at me, said take that one because I had 0:26:37.280 --> 0:26:38.200 a walkie talkie. 0:26:38.680 --> 0:26:41.440 Vazquez Pacheco and all the others who were arrested in 0:26:41.520 --> 0:26:45.280 Rockville were taken by bus to the Montgomery County Police Academy, 0:26:45.880 --> 0:26:48.000 where the police had set up their gym as a 0:26:48.040 --> 0:26:59.040 temporary detention center. Eventually they let everyone go. The protest 0:26:59.080 --> 0:27:02.760 at the FDA was a success. Act Up had gathered 0:27:02.800 --> 0:27:05.560 AIDS activists from around the country in a common cause, 0:27:06.359 --> 0:27:09.639 and they had made their demands literally front page news. 0:27:10.000 --> 0:27:12.760 Angry demonstrators managed to close down the Food and Drug 0:27:12.800 --> 0:27:16.280 Administration Today, they accused the agency under President Reagan of 0:27:16.359 --> 0:27:18.760 wasting time in the war against ADS. 0:27:19.119 --> 0:27:21.760 That sort of changed everything when they said, oh, wait 0:27:21.800 --> 0:27:24.800 a minute, you know, these fagots are pissed off and 0:27:24.840 --> 0:27:26.000 they're not playing around. 0:27:28.160 --> 0:27:31.480 In June of nineteen eighty nine, about nine months after 0:27:31.520 --> 0:27:35.480 the protest in Rockville, the FDA approved two drugs to 0:27:35.520 --> 0:27:39.480 treat people with AIDS, one for numisistus pneumonia and one 0:27:39.520 --> 0:27:44.760 for cytomegalovirus retinitis, a condition that left many AIDS patients blind. 0:27:45.400 --> 0:27:48.400 Both were drugs developed for other purposes that act UP 0:27:48.440 --> 0:27:52.600 had been demanding access to. According to Mark Harrington, the 0:27:52.680 --> 0:27:55.080 fact that they were finally approved was a sign that 0:27:55.119 --> 0:27:56.720 the government was starting to listen. 0:27:57.280 --> 0:27:59.280 The FDA began to think about how to do things 0:27:59.320 --> 0:28:02.440 differently because they realized that the traditional way of doing 0:28:02.520 --> 0:28:07.400 studies was too slow for a pandemic, and the traditional 0:28:07.480 --> 0:28:11.680 way of doing very restrictive enrollment criteria was not only 0:28:11.720 --> 0:28:14.920 too restrictive for a pandemic like AIDS, but was actually 0:28:14.960 --> 0:28:16.080 too restrictive period. 0:28:16.760 --> 0:28:19.520 It was around this time that AIDS activists began to 0:28:19.640 --> 0:28:24.720 rally around a new slogan, Drugs into Bodies. It reflected 0:28:24.720 --> 0:28:28.639 a mix of hope and desperation, suggesting that if only 0:28:28.720 --> 0:28:32.480 scientists could try enough different drugs, one of them would 0:28:32.480 --> 0:28:37.000 surely turn out to work. In the meantime, anything was 0:28:37.040 --> 0:28:37.959 better than nothing. 0:28:38.840 --> 0:28:42.880 At the time, roughly fifty percent of gay men in 0:28:43.160 --> 0:28:45.320 New York City were infected with HIV. 0:28:46.280 --> 0:28:49.720 This is Garan's Frankie Ruda, who joined Act Up in 0:28:49.800 --> 0:28:52.560 nineteen eighty eight at the age of seventeen. 0:28:53.080 --> 0:28:56.440 I mean, just imagine if half the people you went 0:28:56.480 --> 0:29:00.520 to high school with were suddenly told that they were 0:29:00.560 --> 0:29:03.920 probably gonna die in the next three to seven years. 0:29:04.640 --> 0:29:07.280 Drugs and the bodies was a chance at living. It 0:29:07.360 --> 0:29:08.080 was pretty simple. 0:29:08.880 --> 0:29:11.320 Nobody an act Up seemed to pay much attention to 0:29:11.320 --> 0:29:16.000 Frankie Ruda's age. She was outspoken and enthusiastic, and the 0:29:16.040 --> 0:29:18.640 fact that she was a teenager probably just made her 0:29:18.680 --> 0:29:19.600 a better activist. 0:29:20.040 --> 0:29:21.840 I had two years of high school and a GD 0:29:23.840 --> 0:29:26.560 like you know, but I was I had very high 0:29:26.640 --> 0:29:29.760 reading skills and apparently an unbounded sense of confidence, so 0:29:32.320 --> 0:29:36.240 or at least determination. You know, I wasn't doing anything 0:29:36.240 --> 0:29:38.120 in a calculated way. Nobody was doing anything in a 0:29:38.120 --> 0:29:44.520 particularly calculated way. It was just this urgent, urgent, urgent need. 0:29:45.320 --> 0:29:48.640 And the only question ask of anybody is not like 0:29:48.920 --> 0:29:51.520 who are you or how educated you are, or like 0:29:51.560 --> 0:29:53.680 do you have money or do you have the right 0:29:53.720 --> 0:29:55.960 to do this? The only question act up asked of 0:29:55.960 --> 0:29:59.880 anybody is can you help? And if you could help, 0:30:00.120 --> 0:30:04.120 then people were really happy to work with you on anything. 0:30:05.080 --> 0:30:08.280 Like Mark Harrington, Frankie Ruda was drawn to the Treatment 0:30:08.320 --> 0:30:12.080 and Data Subcommittee. There, she learned about drugs that seemed 0:30:12.080 --> 0:30:14.960 like they might be worth testing on AIDS patients, including 0:30:15.000 --> 0:30:17.800 some that were approved in other countries but weren't available 0:30:17.840 --> 0:30:21.240 in the United States. At one point, Frankie Ruda started 0:30:21.240 --> 0:30:23.600 working with a group that was importing such drugs and 0:30:23.600 --> 0:30:25.800 setting up underground trials in New York. 0:30:26.640 --> 0:30:29.840 I was part of the team that decided which medications 0:30:29.840 --> 0:30:32.479 we would import in this kind of legal gray area. 0:30:33.080 --> 0:30:36.080 So the idea there was that, you know, we would 0:30:36.160 --> 0:30:39.320 do sort of citizen science research, read the medical literature, 0:30:39.840 --> 0:30:44.000 talk to doctors, talk to manufacturers, find out everything that 0:30:44.080 --> 0:30:47.200 was known about how a medication and a pathogen might 0:30:47.240 --> 0:30:50.680 respond to each other. There was a category we called 0:30:50.720 --> 0:30:53.400 what the hell drugs, where we knew that they were 0:30:53.400 --> 0:30:56.640 extremely safe, we had no idea if they really worked, 0:30:56.800 --> 0:30:59.520 and we were like, well, can hurt might help? What 0:30:59.600 --> 0:31:00.280 the hell you know? 0:31:03.000 --> 0:31:06.200 But identifying potential drugs was only part of the equation. 0:31:07.240 --> 0:31:09.800 Making them accessible to people who couldn't wait around for 0:31:09.840 --> 0:31:13.080 them to be approved was just as important, and during 0:31:13.080 --> 0:31:16.320 the summer of nineteen eighty nine, act up rallied around 0:31:16.360 --> 0:31:20.960 an idea known as parallel track drug trials. The pitch 0:31:21.120 --> 0:31:24.200 was that scientists should conduct their clinical trials as rigorously 0:31:24.240 --> 0:31:28.840 as they wanted, but also simultaneously, they should make experimental 0:31:28.920 --> 0:31:32.120 drugs more widely available to people who had the disease. 0:31:32.840 --> 0:31:36.400 To Harrington and his colleagues, parallel track seemed like a 0:31:36.440 --> 0:31:37.440 no brainer. 0:31:37.800 --> 0:31:40.560 Even just from the nine months that it was from 0:31:40.600 --> 0:31:44.160 the Sea's control of the FDA. Our understanding and knowledge 0:31:44.160 --> 0:31:47.120 about science had grown exponentially in that period of time, 0:31:47.120 --> 0:31:51.120 and our demands were much more precise and much more doable. 0:31:51.840 --> 0:31:54.760 To get parallel track in front of the scientific community, 0:31:55.200 --> 0:31:57.840 Harrington and the others from act up crashed a medical 0:31:57.880 --> 0:32:01.640 conference in Montreal presented their proposal to a group of 0:32:01.640 --> 0:32:06.120 scientists that included Anthony Fauci. In addition to parallel track, 0:32:06.520 --> 0:32:09.960 act UP sketched out an entire research agenda for which 0:32:10.040 --> 0:32:11.880 drugs to test and in what order. 0:32:12.560 --> 0:32:14.560 We rolled out the same demands with each one of 0:32:14.600 --> 0:32:17.400 them that we want this parallel track research into the 0:32:17.400 --> 0:32:21.440 operat news take infections and cancers, research to allow people 0:32:21.480 --> 0:32:25.040 of color, women, drug users, and children into AID clinical trials, 0:32:25.680 --> 0:32:26.560 and we want it now. 0:32:27.160 --> 0:32:28.880 Fauci at least was impressed. 0:32:29.480 --> 0:32:35.640 They trained themselves literally to become scientists without I mean, 0:32:35.720 --> 0:32:40.520 they were lawyers, they were stockbrokers, they were theatrical people, 0:32:41.400 --> 0:32:45.560 and yet they studied the situation and came up with 0:32:45.640 --> 0:32:50.080 a research genda that was really very very well founded, 0:32:50.760 --> 0:32:53.600 an extraordinary and I read it and it was like, wow, 0:32:54.360 --> 0:32:56.800 we got some really serious partners here. 0:33:00.160 --> 0:33:03.240 A few weeks later, Fauci was in San Francisco where 0:33:03.240 --> 0:33:05.720 he met an aid's patient who pressed him further on 0:33:05.760 --> 0:33:07.080 the need for parallel track. 0:33:07.640 --> 0:33:11.040 It was articulated to me by a person who was 0:33:11.120 --> 0:33:15.920 lying in bed, who was on AST, whose virus was controlled, 0:33:15.920 --> 0:33:17.240 but it was still very sick. 0:33:17.840 --> 0:33:20.440 The patient had a condition that was making him go blind. 0:33:21.280 --> 0:33:24.760 A drug called gencyclovir could prevent him from losing his sight, 0:33:25.320 --> 0:33:27.200 but he wasn't allowed to take it at the same 0:33:27.280 --> 0:33:30.360 time as AZT if he wanted to stay in the trial. 0:33:31.040 --> 0:33:33.160 And I remember when I went to the person's room 0:33:33.600 --> 0:33:37.680 down in the Castro in San Francisco, and I sat 0:33:37.720 --> 0:33:40.760 down by his bedside with his partner, and he looked 0:33:40.800 --> 0:33:43.040 at me and he said, doctor Fauci, do you see 0:33:43.080 --> 0:33:46.280 what the government is doing. You're giving me a choice. 0:33:46.720 --> 0:33:49.680 I could either take AZT and not gan cyclovir and 0:33:49.720 --> 0:33:53.479 go blind, or I can take gan cyclovir and maintain 0:33:53.600 --> 0:33:56.640 my vision and die. What kind of choice is that? 0:33:57.640 --> 0:34:01.040 And it became eminently clear to me that we just 0:34:01.160 --> 0:34:02.280 were not getting it. 0:34:03.280 --> 0:34:07.040 The next day, Fauci publicly endorsed Parallel Track during a 0:34:07.080 --> 0:34:07.960 town hall meeting. 0:34:08.880 --> 0:34:12.880 That's when I decided that I would try and with them, 0:34:13.800 --> 0:34:20.720 help to change the system. It wasn't easy for me, because, 0:34:20.760 --> 0:34:24.359 on the one hand, there were still those among the 0:34:24.400 --> 0:34:29.719 activists who still didn't think we were doing things well 0:34:29.840 --> 0:34:33.400 enough and quickly enough. And there were many among the 0:34:33.480 --> 0:34:38.959 scientific community who thought I was caving in to the activists. 0:34:39.840 --> 0:34:42.400 But I knew deep down that I was doing the 0:34:42.480 --> 0:34:42.960 right thing. 0:34:51.000 --> 0:34:55.120 Even as Fauci grew more sympathetic to Actup's demands, many 0:34:55.160 --> 0:34:57.680 activists continued to regard him with suspicion. 0:34:58.200 --> 0:35:00.719 We're with treatment in data, with many, and we're going 0:35:00.760 --> 0:35:04.280 to facilitate this meeting as soon as doctor and m Fauci. 0:35:05.400 --> 0:35:08.719 In the fall of nineteen eighty nine, Fauci arranged to 0:35:08.719 --> 0:35:11.239 attend an act UP meeting in New York to be. 0:35:11.280 --> 0:35:14.279 Respectful of people who were talking, that they're not be 0:35:14.400 --> 0:35:17.920 cheering or hissing or booing. That we really tried to 0:35:18.080 --> 0:35:22.120 use this meeting as let's call it a working confrontation. 0:35:23.200 --> 0:35:25.920 I went down to the Gay and Lesbian Community Center 0:35:26.680 --> 0:35:30.440 down in Greenwich Village literally by myself, I think I 0:35:30.480 --> 0:35:33.040 had one of my staff was with me, and got 0:35:33.080 --> 0:35:35.200 in the room where there were about one hundred act 0:35:35.280 --> 0:35:40.800 UP people who were bristling within many respects, anger and 0:35:41.880 --> 0:35:44.200 being upset with how the government was acting. 0:35:44.719 --> 0:35:48.200 Tony came up to a meeting of Treatment and Data 0:35:49.080 --> 0:35:52.799 and submitted to basically three hours of tough questions from us, 0:35:53.000 --> 0:35:54.840 including accusations of genocide. 0:35:54.960 --> 0:35:58.960 Hey, doctor Fauci, I don't question you about where your 0:35:59.000 --> 0:36:02.640 moral commitment did I'm talking about the practicality of how 0:36:02.680 --> 0:36:03.800 we get things done. 0:36:04.120 --> 0:36:06.239 You are in a spot which people say, what the 0:36:06.280 --> 0:36:07.120 hell is he doing? 0:36:08.120 --> 0:36:10.799 And I said, okay, I'm here, I'm with you, I'm 0:36:10.800 --> 0:36:15.320 sitting down among you. I don't have any body sticking 0:36:15.400 --> 0:36:18.040 up for me or protecting me. Let's hear what you 0:36:18.120 --> 0:36:18.840 have to say. 0:36:19.920 --> 0:36:20.600 What what we're. 0:36:20.440 --> 0:36:25.280 Saying is that people, including yourself, in some levels, must 0:36:25.320 --> 0:36:29.920 have one their conscience. These deaths why there is a 0:36:30.000 --> 0:36:33.120 more aggressive movement to make sure that the next opportunistic 0:36:33.160 --> 0:36:36.000 infections aren't dealt with more effectively and aggressive mood. 0:36:36.040 --> 0:36:39.319 The meeting was quite heavy on the science. Much of 0:36:39.360 --> 0:36:42.480 the discussion revolved around which drugs should be tested first 0:36:42.920 --> 0:36:46.160 and how Fauci could more effectively use his political muscle. 0:36:47.320 --> 0:36:50.480 Fauci agreed with some of the criticism and conceded that 0:36:50.480 --> 0:36:52.400 the medical establishment could do better. 0:36:52.640 --> 0:36:54.160 To you, I agree with you completely. 0:36:54.200 --> 0:36:56.479 I told you then, I'll tell you now. Things off better. 0:36:56.560 --> 0:36:59.000 We could send you a list if you don't already 0:36:59.040 --> 0:37:01.839 have it, of all of the activities. 0:37:01.239 --> 0:37:04.240 That are going on, but it isn't enough. We obviously still. 0:37:04.040 --> 0:37:04.919 Need to do more. 0:37:05.520 --> 0:37:09.160 At other points, Fauci aggressively corrected what act UP members 0:37:09.160 --> 0:37:09.919 were saying to him. 0:37:10.239 --> 0:37:13.919 Now, that's wrong, but you keep saying I'm wrong. 0:37:15.880 --> 0:37:16.560 You see, this is. 0:37:16.480 --> 0:37:16.839 What I mean. 0:37:16.920 --> 0:37:18.040 You make a presumption on them. 0:37:18.080 --> 0:37:19.839 Tell you why you're absolutely wrong. 0:37:19.920 --> 0:37:22.959 You see, in those moments, Fauci could come off as 0:37:23.120 --> 0:37:24.080 kind of patronizing. 0:37:24.400 --> 0:37:27.200 I think that you may be naive and understanding how 0:37:27.280 --> 0:37:28.520 you can get things done. 0:37:28.560 --> 0:37:29.320 In Washington. 0:37:30.320 --> 0:37:33.560 You don't get many shots of going out like the 0:37:33.600 --> 0:37:37.040 lone range, and you get one shot at get something done. 0:37:37.080 --> 0:37:39.320 If you do that, that's the name of the game. 0:37:42.239 --> 0:37:44.800 Despite the tensions that flared up at that first meeting 0:37:44.840 --> 0:37:48.080 in New York, over the coming months, Fauci and some 0:37:48.120 --> 0:37:50.520 of his colleagues started hosting members of the Treatment and 0:37:50.600 --> 0:37:54.919 Data Group in Washington. Both sides remember the experience as 0:37:54.920 --> 0:37:56.240 something of a culture clash. 0:37:57.200 --> 0:37:59.360 We learned a lot from them, and they learned a 0:37:59.360 --> 0:38:04.360 lot from us. But it wasn't always a very smooth road. 0:38:05.400 --> 0:38:08.840 I remember going to meetings in Washington, DC and like 0:38:09.040 --> 0:38:11.799 just getting up to the microphone and asking questions, you know, 0:38:12.200 --> 0:38:14.920 wearing my like five dollars miniskirt that I got at 0:38:14.920 --> 0:38:18.839 a street fair in some parking lot in Manhattan, you know, 0:38:19.080 --> 0:38:21.439 and like they just looked at us, like, who are 0:38:21.480 --> 0:38:24.360 you people? It felt like we were from a totally 0:38:24.360 --> 0:38:25.040 different world. 0:38:25.920 --> 0:38:29.719 In many ways, they were. For years now, the activists 0:38:29.719 --> 0:38:33.520 have been operating in the epicenter of the epidemic. Fauci 0:38:33.600 --> 0:38:36.200 and his colleagues, on the other hand, worked in bucolic 0:38:36.280 --> 0:38:40.520 suburban communities, far away from the mass death that surrounded 0:38:40.560 --> 0:38:45.120 act UP members in New York. By confronting the scientists directly, 0:38:45.800 --> 0:38:48.839 act UP was forcing them to perceive the crisis more 0:38:48.880 --> 0:38:50.120 clearly and vividly. 0:38:51.480 --> 0:38:56.400 Once the researchers began to know living people with AIDS, 0:38:57.600 --> 0:39:00.960 it changed people like Tony Fauci when they began to 0:39:00.960 --> 0:39:03.839 meet with us not just as patients but as activists 0:39:03.880 --> 0:39:06.880 and antagonists and people who wanted to get them to 0:39:06.920 --> 0:39:09.759 do the right thing. And then they would lie awake 0:39:09.800 --> 0:39:11.640 at night and toss and turn and think about it 0:39:11.680 --> 0:39:14.759 and realize that in some cases we were right. And 0:39:14.840 --> 0:39:17.520 meanwhile we would be tossing and turning back in New 0:39:17.600 --> 0:39:21.120 York after meeting with them, and we would sometimes learn 0:39:21.320 --> 0:39:25.560 things from them that we hadn't thought of before, And 0:39:25.640 --> 0:39:29.520 we began going from having an argument to having a conversation, 0:39:30.360 --> 0:39:32.799 and from having a conversation to having a partnership. 0:39:41.640 --> 0:39:44.520 The new found alliance between Fauci and the Treatment and 0:39:44.600 --> 0:39:47.160 Data Group did not mean that act UP was done 0:39:47.160 --> 0:39:50.480 protesting him. There was one issue in particular that the 0:39:50.520 --> 0:39:51.719 activists were focused on. 0:39:52.560 --> 0:39:55.120 We started telling Tony that we wanted him to get 0:39:55.200 --> 0:39:58.760 us invited to the meeting of the NIH funded clinical 0:39:58.760 --> 0:40:01.360 trials network, which was called the AIDS Clinical Trial Group. 0:40:02.080 --> 0:40:06.280 The AIDS Clinical Trial Group at NIH determined which treatments 0:40:06.320 --> 0:40:10.319 would be studied, and when activists insisted that their new 0:40:10.360 --> 0:40:13.720 partnership with Fauci was little more than lip service until 0:40:13.760 --> 0:40:16.840 people with AIDS were part of the group and included 0:40:16.960 --> 0:40:18.239 in making those decisions. 0:40:18.880 --> 0:40:21.520 And then he said, yeah, you can come, but the 0:40:21.600 --> 0:40:23.440 researchers really don't want you to come, so maybe you 0:40:23.440 --> 0:40:26.719 should wait until the next meeting. And we were like, well, no, 0:40:26.760 --> 0:40:29.040 that's what you told us about the last meeting. You 0:40:29.080 --> 0:40:29.920 told us to hold on. 0:40:30.760 --> 0:40:35.200 And so act UP started organizing another direct action. This 0:40:35.239 --> 0:40:38.920 one would be called storm the NIH. The plan was 0:40:38.960 --> 0:40:42.640 for hundreds of protesters to flood Fauci's home turf and 0:40:42.719 --> 0:40:45.799 demand more say in how the federal government set its 0:40:45.800 --> 0:40:49.480 research priorities. The group wanted to give Fauci a chance 0:40:49.520 --> 0:40:52.680 to respond to their demands before the protest actually happened, 0:40:53.440 --> 0:40:56.560 so Mark Harrington arranged for a meeting along with another 0:40:56.600 --> 0:40:58.320 act UP member, Peter Staley. 0:40:58.960 --> 0:41:03.160 Peter had the bright idea of asking Fauci for a dinner. 0:41:06.000 --> 0:41:09.160 Fauci invited the activists to the home of his deputy director, 0:41:09.400 --> 0:41:10.319 doctor Jim Hill. 0:41:11.320 --> 0:41:14.680 Doctor Jim Hill was a good host and cooked a 0:41:14.680 --> 0:41:18.439 good chicken and port a nice glass of wine. And 0:41:18.480 --> 0:41:20.160 at that time I was a chain smoker and he 0:41:20.200 --> 0:41:23.120 allowed in chain smoking. It was crazy. We're in doctor 0:41:23.160 --> 0:41:26.799 Hill's living room and Tony's like, so, why are you 0:41:26.800 --> 0:41:28.799 guys here? What brings you down? 0:41:29.040 --> 0:41:32.560 Mark Carrington and Peter Staley said, you know, we still 0:41:32.680 --> 0:41:36.160 need more. We want more of the clinical trials, we 0:41:36.200 --> 0:41:39.759 want more representation. You're doing great, we love you, but 0:41:39.920 --> 0:41:44.919 we still are going to storm the NIH And I said, 0:41:44.920 --> 0:41:47.080 oh my goodness, you know, be careful. That might put 0:41:47.160 --> 0:41:47.879 us back a bit. 0:41:48.080 --> 0:41:51.359 Tony's like, well, why we're talking. We've been talking for 0:41:51.400 --> 0:41:54.440 months and Peter's like, yeah, but you haven't given in 0:41:55.000 --> 0:41:58.200 to any of our demands since Parallel Track. You're not 0:41:58.280 --> 0:42:00.400 letting people with AIDS and their allies to go to 0:42:00.440 --> 0:42:01.000 those meetings. 0:42:01.160 --> 0:42:04.319 He says, no, it's nothing personal against you, but we've 0:42:04.360 --> 0:42:07.399 got to storm the NIH. We've got more that we've 0:42:07.400 --> 0:42:07.920 got to do. 0:42:08.640 --> 0:42:10.319 We were like, we'll call off the demo if you'd 0:42:10.400 --> 0:42:12.680 given to all our demands, but for now, we're just 0:42:12.719 --> 0:42:13.440 going to go forward. 0:42:14.000 --> 0:42:17.440 Fauci did not give in to their demands. As much 0:42:17.480 --> 0:42:20.680 as his relationship with the activists had deepened, they were 0:42:20.719 --> 0:42:22.920 still on opposite sides of a line. 0:42:23.040 --> 0:42:27.840 Even though we became colleagues and in some respects friends, 0:42:29.160 --> 0:42:33.880 They would not let that relationship deter them from pushing 0:42:34.000 --> 0:42:37.720 even more for what they felt they needed. 0:42:48.480 --> 0:42:51.920 On the morning of May twenty first, nineteen ninety, activists 0:42:51.920 --> 0:42:55.600 assembled at a metro station near the NIH. Then they 0:42:55.600 --> 0:42:59.200 marched to campus, a quiet, leafy collection of brick buildings 0:42:59.200 --> 0:43:00.480 and concrete office blocks. 0:43:01.200 --> 0:43:02.960 People a night won't. 0:43:02.719 --> 0:43:05.440 Be quiet, Oh my drugs treatment. 0:43:05.160 --> 0:43:06.200 Or riot people. 0:43:06.640 --> 0:43:09.520 At one point, an air horn started blasting every twelve 0:43:09.520 --> 0:43:12.799 minutes as a memorial to all the people dying of 0:43:12.840 --> 0:43:21.640 AIDS on a daily basis. 0:43:23.080 --> 0:43:24.640 This isn't a syche of your molecule. 0:43:24.840 --> 0:43:27.399 It's representing that there's treatments out there that the NIH 0:43:27.480 --> 0:43:28.600 isn't testing. They're not testing. 0:43:28.680 --> 0:43:31.480 This is Garan's Frankie Ruda in footage from the protest, 0:43:31.960 --> 0:43:32.759 and there's a lot. 0:43:32.640 --> 0:43:34.480 Of different treatments that they're not studying, and they're not 0:43:34.520 --> 0:43:37.439 studying them in all populations when they are studying them. 0:43:37.640 --> 0:43:41.160 Frankie Ruda did not hesitate to call Fauci out by name. 0:43:41.280 --> 0:43:42.560 And that building down that way. 0:43:42.800 --> 0:43:45.040 Dr Anthony Fauci and a lot of other hot shot 0:43:45.120 --> 0:43:48.320 scientists are having conference deciding the research priorities for the 0:43:48.400 --> 0:43:51.799 National Institutes of Valerine and Infectice Diseases. We're down here 0:43:51.840 --> 0:43:54.000 because we think we should be deciding the research priorities 0:43:54.000 --> 0:43:56.120 for the National Institute of Allergy and in Texted Diseases, 0:43:56.360 --> 0:43:58.280 because these are the people who are literally the disease. 0:43:58.560 --> 0:44:00.279 These are the people who know what's going on because 0:44:00.280 --> 0:44:02.839 they're dealing with it every day. Those people don't they're 0:44:02.840 --> 0:44:04.719 fascinated by this little buyers and they don't give a 0:44:04.760 --> 0:44:06.280 fuck about the people who are living. 0:44:06.080 --> 0:44:06.760 With thee. 0:44:08.400 --> 0:44:11.279 For dying for right. 0:44:12.040 --> 0:44:14.520 Frankie Ruda was not the only one at the protest 0:44:14.520 --> 0:44:18.080 who took direct aim at Fauci. One guy carried a 0:44:18.120 --> 0:44:21.680 sign that said doctor Fauci you are killing us. Another 0:44:21.840 --> 0:44:24.120 said Anthony Fauci, I piss on you. 0:44:24.560 --> 0:44:27.840 They had my head on a spike. It was it 0:44:27.920 --> 0:44:32.840 was really very you know, in some respects poignant and moving, 0:44:32.920 --> 0:44:35.680 in some respects almost entertaining. 0:44:36.800 --> 0:44:40.959 Stormed the NIH encapsulated the inside outside strategy that act 0:44:41.040 --> 0:44:44.760 up had now perfected. While some members worked on Fauci 0:44:44.840 --> 0:44:48.360 and his colleagues from close range, others ratcheted up the 0:44:48.360 --> 0:44:52.160 pressure publicly. In some cases it was the same activists 0:44:52.160 --> 0:44:52.959 who were doing both. 0:44:55.760 --> 0:44:59.279 Pete promised me Peter Staley that he was going to 0:44:59.280 --> 0:45:01.880 be so outland thish he was going to get arrested. 0:45:03.080 --> 0:45:07.400 And when when they finally did storm the NIH, he 0:45:07.560 --> 0:45:13.120 climbed up on the overhanging panopy of my building and 0:45:13.200 --> 0:45:16.160 I saw that the police was starting to get a 0:45:16.200 --> 0:45:20.279 little rough, so they grabbed Peter. And I saw that, 0:45:20.400 --> 0:45:22.040 and I was afraid they were going to hurt him, 0:45:22.560 --> 0:45:25.000 so I ran down. I was looking at it out 0:45:25.040 --> 0:45:28.720 my window, and I ran down to the ground floor, 0:45:28.840 --> 0:45:30.919 and just as I got to the ground floor, Peter 0:45:31.120 --> 0:45:33.799 was in handcuffs being led away by the police. And 0:45:33.880 --> 0:45:36.759 Peter looked up and said, with a big smile in 0:45:36.800 --> 0:45:39.000 his face, he said, see Tony, I told you I 0:45:39.040 --> 0:45:41.879 was going to get arrested, and the police looked at 0:45:41.960 --> 0:45:45.319 us like, of both of these guys crazy. 0:45:45.360 --> 0:45:45.959 Here they are. 0:45:45.880 --> 0:45:48.560 Storming the building and they look like they're good friends. 0:45:57.440 --> 0:46:01.000 One month after storm the nih In Gue of nineteen ninety, 0:46:01.760 --> 0:46:04.960 Anthony Fauci gave a speech at the sixth International AIDS 0:46:05.000 --> 0:46:06.360 Conference in San Francisco. 0:46:06.680 --> 0:46:07.160 It is a. 0:46:07.040 --> 0:46:09.840 Distinct honor and a pleasure to participate in the closing 0:46:09.920 --> 0:46:13.680 ceremonies of the sixth International Congress on AIDS and to 0:46:13.719 --> 0:46:16.240 share with you my perspective on AIDS research. 0:46:16.680 --> 0:46:19.920 Fauci spent much of his allotted time giving his perspective 0:46:19.960 --> 0:46:22.120 on what the new decade would mean for the AIDS 0:46:22.120 --> 0:46:26.040 epidemic projection. Then he turned his attention to the relationship 0:46:26.160 --> 0:46:31.720 between scientists and activists. Activists bring a very special insight 0:46:31.920 --> 0:46:35.640 into the way that we design our scientific approaches. Together, 0:46:35.680 --> 0:46:39.200 we are a formidable force with a common goal. Fauci 0:46:39.280 --> 0:46:41.880 wanted the activists and attendance to come away with a 0:46:41.960 --> 0:46:42.920 clear message. 0:46:43.160 --> 0:46:46.160 I don't agree with everything you're doing, but you need 0:46:46.200 --> 0:46:49.440 to understand that we are all together in this. The 0:46:49.520 --> 0:46:54.040 scientific community is not your enemy. The scientific community cares 0:46:54.080 --> 0:46:58.040 about you. The scientific community has devoted everything that they 0:46:58.120 --> 0:47:02.000 do to try and protect you and get your lives 0:47:02.560 --> 0:47:06.680 back to some form of normality with the proper drugs. 0:47:06.719 --> 0:47:09.920 And it was a real coming together of a realization 0:47:10.239 --> 0:47:12.040 that we were all in this together. 0:47:12.920 --> 0:47:15.680 This is the way we serve, but we must never 0:47:15.760 --> 0:47:18.279 lose sight of the fact that the people whom we 0:47:18.360 --> 0:47:21.520 serve are the HIV infected people throughout the world. 0:47:21.560 --> 0:47:21.880 Thank you. 0:47:27.680 --> 0:47:30.799 Basically, Fauci came up to us and he told us 0:47:30.800 --> 0:47:32.680 that he was giving in to all of our demands, 0:47:33.360 --> 0:47:35.279 and he was telling the researchers that they had to 0:47:35.320 --> 0:47:37.400 do what we asked, and he followed up on that. 0:47:38.920 --> 0:47:41.600 In the months after the conference, it was announced that 0:47:41.640 --> 0:47:44.480 people with AIDS would finally be included in the clinical 0:47:44.520 --> 0:47:48.239 trials group, positioning them to exert real influence on its 0:47:48.239 --> 0:47:52.239 research agenda. Fauci had made good on his word. 0:47:52.640 --> 0:47:54.520 So we got to see him at the height of 0:47:54.520 --> 0:47:59.560 his defensiveness and we got to see him change and 0:47:59.600 --> 0:48:03.320 that was a wonderful thing. And ever since then, people 0:48:03.320 --> 0:48:06.279 with AIDS and their allies and advocates have been part 0:48:06.320 --> 0:48:10.600 of the AIDS research clinical trials system and not just 0:48:10.680 --> 0:48:13.120 beating up on the outside, but actually helping to shape 0:48:13.160 --> 0:48:17.480 it from the inside. 0:48:17.520 --> 0:48:20.680 Harrington's happiness wasn't shared by every member of act UP. 0:48:21.640 --> 0:48:25.120 Sarah Schulman, for example, was unimpressed by how slowly Fauci 0:48:25.200 --> 0:48:28.120 had come around and what it had taken to change 0:48:28.120 --> 0:48:28.560 his mind. 0:48:29.200 --> 0:48:33.600 He was brought around by a combination of pressure that 0:48:33.719 --> 0:48:37.440 made him uncomfortable from people he did not understand, like 0:48:37.520 --> 0:48:43.600 poor people or women, and a kind of collegiality from 0:48:43.840 --> 0:48:46.520 a certain kind of man that he eventually was able 0:48:46.520 --> 0:48:47.440 to identify with. 0:48:48.160 --> 0:48:51.680 As Garantz Frankie Ruda told me, many people outside of 0:48:51.680 --> 0:48:54.480 Treatment and Data were starting to get antsy about how 0:48:54.520 --> 0:48:56.880 close some of their fellow activists were getting to the 0:48:56.880 --> 0:48:57.760 people in power. 0:48:58.120 --> 0:49:02.360 People started having arguments about whether or not to continue 0:49:02.400 --> 0:49:04.960 meeting with scientists. There was a proposal for a moratorium 0:49:05.000 --> 0:49:07.480 on meetings for six months, and I remember very vividly 0:49:07.520 --> 0:49:10.000 being at the general meeting where that was discussed, where 0:49:10.000 --> 0:49:12.479 someone got up and said, it's only for six months, 0:49:12.480 --> 0:49:14.319 it's not like it's the rest of your life, and 0:49:14.360 --> 0:49:16.719 someone else said, it might actually be the rest of 0:49:16.760 --> 0:49:18.000 my life. 0:49:18.200 --> 0:49:21.200 Meanwhile, some members of act UP had started conceiving of 0:49:21.239 --> 0:49:24.440 the organization as being about more than just AIDS activism. 0:49:25.520 --> 0:49:28.000 They wanted it to be a vehicle for upending the 0:49:28.160 --> 0:49:32.319 entire American healthcare system and tackling what they considered to 0:49:32.320 --> 0:49:35.239 be the broader systemic issues, of which AIDS was just 0:49:35.360 --> 0:49:36.160 one component. 0:49:36.680 --> 0:49:39.400 The question arose whether or not act UP was a 0:49:39.440 --> 0:49:42.719 more general left wing group or whether it was specifically 0:49:42.719 --> 0:49:46.920 an HIV organization. And that's I think where things started 0:49:46.920 --> 0:49:48.040 to get tense. 0:49:49.480 --> 0:49:52.920 Increasingly, treatment and data members felt like they were operating 0:49:52.960 --> 0:49:54.560 independently of their colleagues. 0:49:55.200 --> 0:49:57.319 Instead of, you know, going to demos, we were now 0:49:57.360 --> 0:50:00.480 going to scientific meetings and helping to design produc calls, 0:50:01.400 --> 0:50:04.920 and so the old famous inside outside strategy where you 0:50:04.960 --> 0:50:09.160 negotiate but you also demonstrate. The balance became more going 0:50:09.239 --> 0:50:13.640 to science meetings and less to demonstrations, and in retrospect, 0:50:13.680 --> 0:50:14.880 dot created tension. 0:50:18.640 --> 0:50:21.760 In the years since its founding, act UP had managed 0:50:21.800 --> 0:50:25.160 to get a staggering number of their demands met. They 0:50:25.200 --> 0:50:27.840 had won changes to the drug testing and approval process. 0:50:28.640 --> 0:50:30.680 They had secured a seat at the table for people 0:50:30.680 --> 0:50:34.040 with AIDS when it came to decision making around research funding. 0:50:34.960 --> 0:50:38.000 They had secured compassionate use approval for drugs to treat 0:50:38.040 --> 0:50:43.200 AIDS related blindness and numicistis pneumonia. Here again is Robert 0:50:43.239 --> 0:50:44.160 Vasquez Pacheco. 0:50:44.920 --> 0:50:49.720 We changed the ways research was done in the United 0:50:49.760 --> 0:50:55.200 States and brought an element of compassion. I mean that 0:50:55.320 --> 0:50:58.800 the process became humanized. We got drugs into bodies. 0:50:59.480 --> 0:51:02.560 But despite their victories, everyone we talked to for this 0:51:02.640 --> 0:51:05.839 episode was quick to temper their excitement about what act 0:51:05.920 --> 0:51:08.440 UP had achieved. By the end of the nineteen eighties, 0:51:09.560 --> 0:51:12.440 for all their efforts, there was still no drug that 0:51:12.480 --> 0:51:14.680 could save people from dying of AIDS. 0:51:15.600 --> 0:51:18.160 We began to realize that this thing of hoping for 0:51:18.360 --> 0:51:20.360 like a magic bullet, that you know, we would all 0:51:20.440 --> 0:51:22.880 be activists for two or three years, and then the 0:51:22.960 --> 0:51:24.799 cure would come, the vaccine would come, and we would 0:51:24.800 --> 0:51:27.120 all go back to our lives wasn't going to. 0:51:27.080 --> 0:51:30.799 Happenzt forestalled things for a while for some who took 0:51:30.840 --> 0:51:32.560 it and were able to take it and tolerate it. 0:51:32.960 --> 0:51:34.880 Some people were able to get access to drugs that 0:51:34.920 --> 0:51:39.200 prevented opportunistic infections, or they were just were lucky enough 0:51:39.200 --> 0:51:42.360 to have immune systems that declined more slowly. But a 0:51:42.360 --> 0:51:44.080 lot of people didn't, and just the pace of the 0:51:44.120 --> 0:51:44.879 dying picked up. 0:51:45.440 --> 0:51:49.080 This was an epidemic that kept growing, so it wasn't 0:51:49.120 --> 0:51:51.560 as if it reached a plateau. We kept seeing more 0:51:51.680 --> 0:51:53.200 and more people getting sick. 0:51:53.760 --> 0:51:57.720 It was very hard to be so young and watch 0:51:57.760 --> 0:52:01.840 your friends suffer and die on our regular basis aids 0:52:01.960 --> 0:52:05.239 is a terrible death. And to watch people in their 0:52:05.239 --> 0:52:10.160 twenties and thirties become demented and blind and covered in 0:52:11.000 --> 0:52:13.560 skin cancer, I mean, it was horrible. 0:52:15.200 --> 0:52:19.040 The group never completely folded, but around nineteen ninety one 0:52:19.400 --> 0:52:23.080 a fallo period started, during which dozens, if not hundreds, 0:52:23.080 --> 0:52:27.240 of act UP members burned out and quit. Robert Basquez 0:52:27.239 --> 0:52:30.319 Pacheco moved to Philadelphia and tried to focus on his 0:52:30.360 --> 0:52:34.680 own life. He still had faith that something eventually would work, 0:52:35.480 --> 0:52:37.680 but he also thought about all the people, like his 0:52:37.719 --> 0:52:41.560 boyfriend Jeff, who would already be gone when that day arrived. 0:52:41.960 --> 0:52:44.960 And of course what struck me was, oh, God, you 0:52:45.000 --> 0:52:48.080 know they're going to find something, and it's going to 0:52:48.120 --> 0:52:53.120 be too late for so many people, for so many people. 0:53:23.360 --> 0:53:25.239 Takes a few months. 0:53:25.280 --> 0:53:31.840 But on Bones here for Strong, we tell all. 0:53:31.880 --> 0:53:39.200 Our school friends a sign all the cast in the playground. 0:53:39.560 --> 0:53:42.840 On the next episode of Fiasco, the Tide begins to 0:53:42.920 --> 0:53:46.680 turn as a new class of drugs shows promise against HIV. 0:53:47.400 --> 0:53:49.959 The fact that it happened in one patient it tells 0:53:50.000 --> 0:53:52.520 us for the first time that it's actually possible. 0:53:53.680 --> 0:53:57.799 Fiasco is presented by Audible Originals and Prologue Projects. The 0:53:57.840 --> 0:54:01.680 show is produced by Andrew Parsons, Sam Graham Felson, Madeline Kaplan, 0:54:01.920 --> 0:54:06.920 Ulla Kulpa, and me Leon Nafock. Our researcher is Francis Carr. 0:54:07.640 --> 0:54:12.280 Editorial support from Jessica Miller and Norah Waswaz, Archival research 0:54:12.320 --> 0:54:17.560 by Michelle Sullivan. This season's score is composed by Edith Mudge. 0:54:17.680 --> 0:54:20.960 Additional music by Nick Sylvester of God Mode, Joel Saint, 0:54:21.040 --> 0:54:25.439 Julian and Dan English, Noah Hackt, and Joe Valley. Our 0:54:25.480 --> 0:54:28.600 theme song is by Spatial Relations. Our credit song this 0:54:28.640 --> 0:54:31.000 week is the Place Where He Inserted the Blade by 0:54:31.040 --> 0:54:35.760 Black Country New Road Music licensing courtesy of Anthony Roman. 0:54:36.480 --> 0:54:40.560 Audio mixed by Erica Wong with additional support from Selina Urabe. 0:54:41.239 --> 0:54:44.080 Our artwork is designed by Teddy Blanks at Chips and Y. 0:54:45.400 --> 0:54:48.160 David Blum is the editor in chief of Audible Originals. 0:54:48.840 --> 0:54:52.520 Mike Charzik is the vice president of Audible Studios. Zach 0:54:52.600 --> 0:54:56.280 Ross is head of acquisition and development for Audible. Thanks 0:54:56.280 --> 0:54:59.160 to Chris Roby, Susie Lichtenberg, and the team at Radio 0:54:59.239 --> 0:55:03.359 Lab and Peter Yassi. Special thanks to David France, Bill 0:55:03.400 --> 0:55:06.280 Balman and Thomas Knauglis for sharing with us the audio 0:55:06.320 --> 0:55:09.880 of Fauci's meeting with act UP. Thank you for listening, 0:55:10.080 --> 0:55:12.320 and see you back here next week for Episode seven.