1 00:00:00,440 --> 00:00:03,000 Speaker 1: Hey, this is Leon Napok. I'm the host of Fiasco, 2 00:00:03,240 --> 00:00:05,640 Speaker 1: but you may also know me from the podcasts Slowburn, 3 00:00:05,840 --> 00:00:09,240 Speaker 1: Think Twice, Michael Jackson, and Backfired the Vaping Wars. I'm 4 00:00:09,280 --> 00:00:11,880 Speaker 1: excited to be sharing with you the next season of Backfired, 5 00:00:12,000 --> 00:00:15,960 Speaker 1: titled Attention Deficit, which is now available exclusively on Audible. 6 00:00:16,800 --> 00:00:20,320 Speaker 1: Backfired is a podcast about the business of unintended consequences. 7 00:00:20,840 --> 00:00:23,279 Speaker 1: In the first season, my co host Ril Pardess and 8 00:00:23,320 --> 00:00:25,680 Speaker 1: I dove deep into the world of vaping and how 9 00:00:25,680 --> 00:00:28,400 Speaker 1: the well intentioned quest for a safer cigarette went awry. 10 00:00:28,960 --> 00:00:32,879 Speaker 1: Now we're tackling ADHD and how the push to destigmatize 11 00:00:32,880 --> 00:00:35,879 Speaker 1: this hard to define childhood diagnosis has led to an 12 00:00:35,920 --> 00:00:38,720 Speaker 1: explosion of stimulant use in kids as well as adults. 13 00:00:39,000 --> 00:00:41,560 Speaker 1: It's a story about the promise of psychiatry to fix 14 00:00:41,640 --> 00:00:44,640 Speaker 1: our brains and the power of the pharmaceutical industry to 15 00:00:44,680 --> 00:00:47,600 Speaker 1: shape how we and our doctors think about what's wrong 16 00:00:47,640 --> 00:00:50,239 Speaker 1: with us. To hear both seasons of Backfired, go to 17 00:00:50,240 --> 00:00:53,600 Speaker 1: audible dot com slash Backfired and start a free trial 18 00:00:54,040 --> 00:00:59,480 Speaker 1: that's audible dot com slash backfired. Fiasco is intended for 19 00:00:59,600 --> 00:01:03,480 Speaker 1: mature audiences. For a list of books, articles and documentaries 20 00:01:03,520 --> 00:01:05,920 Speaker 1: we used in our research. Follow the link in the 21 00:01:05,920 --> 00:01:12,240 Speaker 1: show notes. Previously on fiasco. 22 00:01:13,800 --> 00:01:18,080 Speaker 2: It's mysterious, it's deadly, and it's baffling medical science. 23 00:01:18,240 --> 00:01:21,399 Speaker 3: Federal health officials consider it an epidemic, yet you rarely 24 00:01:21,400 --> 00:01:22,240 Speaker 3: hear a thing about it. 25 00:01:22,440 --> 00:01:25,520 Speaker 4: We had no other resources but ourselves. I thought, well, 26 00:01:25,560 --> 00:01:26,600 Speaker 4: my goodness, we're all dead. 27 00:01:26,760 --> 00:01:29,440 Speaker 5: It's a disease first detected in the gay community that 28 00:01:29,480 --> 00:01:30,880 Speaker 5: has now spread beyond that. 29 00:01:35,240 --> 00:01:37,480 Speaker 1: When most of us get a cut, we start bleeding. 30 00:01:38,480 --> 00:01:41,440 Speaker 1: Then a minute or two later, our blood clots and 31 00:01:41,480 --> 00:01:45,720 Speaker 1: the bleeding stops. Val Bias knew from an early age 32 00:01:45,760 --> 00:01:49,240 Speaker 1: that his blood didn't work like that. Growing up in Buffalo, 33 00:01:49,280 --> 00:01:52,000 Speaker 1: New York, Bias was always told he had to be 34 00:01:52,040 --> 00:01:54,080 Speaker 1: careful in ways that other kids didn't. 35 00:01:54,760 --> 00:01:59,240 Speaker 6: I think the general position was, you can't do this, 36 00:01:59,400 --> 00:02:02,760 Speaker 6: you can't do that. No wrestling with your cousins, that 37 00:02:02,840 --> 00:02:05,520 Speaker 6: kind of thing. So I had an extended family. There 38 00:02:05,520 --> 00:02:08,720 Speaker 6: were about fifty of us in Buffalo, and of course 39 00:02:08,760 --> 00:02:12,760 Speaker 6: they all understood hemophilia because we had had family members 40 00:02:12,760 --> 00:02:15,560 Speaker 6: who had had it in the past and had passed 41 00:02:15,560 --> 00:02:16,200 Speaker 6: away from it. 42 00:02:18,400 --> 00:02:21,560 Speaker 1: Chemophilia is a rare bleeding disorder. That can turn an 43 00:02:21,639 --> 00:02:26,320 Speaker 1: everyday injury into a life threatening crisis. It affects mostly 44 00:02:26,440 --> 00:02:29,720 Speaker 1: men and boys. Those who have it are typically born 45 00:02:29,800 --> 00:02:32,480 Speaker 1: with a gene mutation that affects the body's ability to 46 00:02:32,520 --> 00:02:37,359 Speaker 1: produce certain proteins. These proteins are what make normal clotting possible, 47 00:02:37,840 --> 00:02:40,480 Speaker 1: and without them, even something as minor as a bumped 48 00:02:40,560 --> 00:02:42,560 Speaker 1: knee can cause internal bleeding. 49 00:02:43,240 --> 00:02:46,320 Speaker 6: Some bleeding episodes can feel like you broke the bone, 50 00:02:47,040 --> 00:02:51,040 Speaker 6: but it's really just the bleeding filling the joint or 51 00:02:51,600 --> 00:02:55,120 Speaker 6: the bruise in a way that can be extremely painful. 52 00:02:56,000 --> 00:02:58,600 Speaker 1: When Bias was a kid, the way to treat these 53 00:02:58,680 --> 00:03:02,600 Speaker 1: kinds of injuries was to transfusions of ice cold plasma, 54 00:03:03,440 --> 00:03:06,800 Speaker 1: a tea colored component of blood that helps distribute proteins 55 00:03:06,800 --> 00:03:08,280 Speaker 1: and nutrients throughout the body. 56 00:03:08,960 --> 00:03:12,600 Speaker 6: I would sit there for six eight hours with a 57 00:03:12,639 --> 00:03:15,880 Speaker 6: blanket on me and my teeth chattering, waiting for the 58 00:03:15,919 --> 00:03:19,440 Speaker 6: treatment to be over. It really was like an icy 59 00:03:19,600 --> 00:03:23,000 Speaker 6: being dripped into your veins. 60 00:03:27,360 --> 00:03:30,080 Speaker 1: To get his mind off the pain, Bias would watch 61 00:03:30,120 --> 00:03:33,640 Speaker 1: I Love Lucy and read and reread books about monsters, 62 00:03:34,240 --> 00:03:37,520 Speaker 1: memorizing minute details about Dracua and the creature from the 63 00:03:37,560 --> 00:03:41,360 Speaker 1: Black Lagoon. His grandmother would give him tangled balls of 64 00:03:41,440 --> 00:03:46,000 Speaker 1: thread that he would carefully untie like homemade puzzles. Bias 65 00:03:46,120 --> 00:03:48,280 Speaker 1: was in and out of the hospital for treatments all 66 00:03:48,320 --> 00:03:48,720 Speaker 1: the time. 67 00:03:49,440 --> 00:03:54,080 Speaker 6: I knew that hospital better than many homes I lived in. 68 00:03:54,280 --> 00:03:58,800 Speaker 6: I mean, top to bottom. Even my accent Buffalonians have 69 00:03:58,840 --> 00:04:02,400 Speaker 6: a particular accent was altered because I spent so much 70 00:04:02,440 --> 00:04:05,600 Speaker 6: time in the hospital with professionals who aren't necessarily from 71 00:04:05,640 --> 00:04:06,120 Speaker 6: the area. 72 00:04:07,360 --> 00:04:10,280 Speaker 1: Bias tried to make the best of his situation, but 73 00:04:10,320 --> 00:04:13,520 Speaker 1: the more he learned about hemophilia, the more he realized 74 00:04:13,560 --> 00:04:15,960 Speaker 1: how different his outlook was from that of his peers. 75 00:04:17,040 --> 00:04:19,520 Speaker 1: In sixth grade, he got a new science textbook at 76 00:04:19,560 --> 00:04:22,720 Speaker 1: school and he looked up hemophilia in the index. 77 00:04:23,040 --> 00:04:28,200 Speaker 6: And there was a paragraph on hemophilia, and I was like, wow, 78 00:04:28,520 --> 00:04:31,040 Speaker 6: people actually know what it is. And I read that 79 00:04:31,080 --> 00:04:33,760 Speaker 6: paragraph and it said my life expectancy would be twenty 80 00:04:33,839 --> 00:04:36,720 Speaker 6: years old. And I was devastated. 81 00:04:37,240 --> 00:04:42,279 Speaker 1: For long stretches of his young life, this was Valbias's reality, 82 00:04:42,400 --> 00:04:47,320 Speaker 1: visiting the hospital, managing pain, expecting to die young. Then 83 00:04:47,640 --> 00:04:50,720 Speaker 1: in the late sixties, a new treatment was developed that 84 00:04:50,760 --> 00:04:53,360 Speaker 1: revolutionized life for people with hemophilia. 85 00:04:55,160 --> 00:04:58,400 Speaker 7: You're looking at something that will let a hemophiliac live 86 00:04:58,600 --> 00:05:00,000 Speaker 7: and bleed like a normal person. 87 00:05:01,200 --> 00:05:04,680 Speaker 1: The new treatment was known as clotting factor, or just 88 00:05:04,800 --> 00:05:08,599 Speaker 1: Factor for short. It was a powdered concentrate that came 89 00:05:08,680 --> 00:05:12,280 Speaker 1: in a small vial, and, like the icy transfusions val 90 00:05:12,360 --> 00:05:15,680 Speaker 1: Bias had been receiving for years, Factor was made out 91 00:05:15,720 --> 00:05:19,320 Speaker 1: of plasma. The difference was that Factor could be stored 92 00:05:19,360 --> 00:05:22,840 Speaker 1: in an ordinary refrigerator and was easy to self administer. 93 00:05:23,839 --> 00:05:26,840 Speaker 1: That meant people with chemophilia no longer had to rush 94 00:05:26,839 --> 00:05:29,520 Speaker 1: to the hospital every time they had a bleeding episode. 95 00:05:29,800 --> 00:05:31,159 Speaker 8: It is called Factor eight. 96 00:05:31,400 --> 00:05:32,840 Speaker 5: You probably have never heard of it. 97 00:05:32,920 --> 00:05:36,520 Speaker 2: Frequent costly injections of a product made from the plasma 98 00:05:36,560 --> 00:05:39,200 Speaker 2: of blood donors keeps them from bleeding to death. 99 00:05:39,800 --> 00:05:43,240 Speaker 1: Factor was one hundred times more effective at clotting blood 100 00:05:43,279 --> 00:05:47,040 Speaker 1: than raw plasma very quickly. It caused the life expectancy 101 00:05:47,040 --> 00:05:51,240 Speaker 1: of people with chemophilia to shoot up dramatically. To val Bias, 102 00:05:51,279 --> 00:05:54,240 Speaker 1: it was like a miracle. Among other things, it meant 103 00:05:54,240 --> 00:05:56,320 Speaker 1: that he could now go off to college on his own. 104 00:05:56,920 --> 00:06:01,400 Speaker 6: It was a reality that I could actually do. He 105 00:06:01,560 --> 00:06:04,839 Speaker 6: even thought. After I talked to other men with heemophilia, 106 00:06:05,240 --> 00:06:07,120 Speaker 6: many of them didn't feel like they could have a 107 00:06:07,120 --> 00:06:10,880 Speaker 6: family or normal life, and I think that clotting factor 108 00:06:11,040 --> 00:06:14,960 Speaker 6: changed that reality for all of us. It made us 109 00:06:14,960 --> 00:06:18,719 Speaker 6: seek professional careers we didn't think we could have. It 110 00:06:18,839 --> 00:06:22,360 Speaker 6: made us reach for the stars because we no longer 111 00:06:22,400 --> 00:06:23,800 Speaker 6: were tethered to the hospital. 112 00:06:27,279 --> 00:06:30,520 Speaker 1: But factor came with a caveat. A single batch of 113 00:06:30,520 --> 00:06:33,839 Speaker 1: it contained the combined plasma of as many as twenty 114 00:06:33,960 --> 00:06:37,360 Speaker 1: thousand different people, way more than a dozen or so 115 00:06:37,440 --> 00:06:40,840 Speaker 1: it took to make the old treatment. If just one 116 00:06:40,880 --> 00:06:44,200 Speaker 1: of those twenty thousand donors was carrying a blood borne disease, 117 00:06:44,960 --> 00:06:49,720 Speaker 1: the person receiving the treatment could become infected. This kind 118 00:06:49,760 --> 00:06:53,080 Speaker 1: of contamination had long been a risk for people with hemophilia. 119 00:06:53,760 --> 00:06:56,800 Speaker 1: Thal Bias had gotten hepatitis B from a blood transfusion 120 00:06:56,800 --> 00:06:59,960 Speaker 1: when he was in sixth grade. But with clotting factors, 121 00:07:00,360 --> 00:07:03,400 Speaker 1: the risk of contracting a blood borne disease was much 122 00:07:03,680 --> 00:07:10,400 Speaker 1: much higher. For Bias and thousands of others like him, 123 00:07:10,640 --> 00:07:14,480 Speaker 1: Factor was a life changing treatment. It seemed like a 124 00:07:14,560 --> 00:07:21,080 Speaker 1: risk worth taking. I'm leon Neefok from Audible Originals and 125 00:07:21,160 --> 00:07:26,640 Speaker 1: prologue projects. This is fiasco. 126 00:07:26,880 --> 00:07:29,720 Speaker 9: Blood banks and plasma centers may be spreading a new 127 00:07:29,720 --> 00:07:32,040 Speaker 9: and mysterious ailment called AIDS. 128 00:07:32,080 --> 00:07:34,600 Speaker 8: Cases go from two to four to eight. 129 00:07:34,920 --> 00:07:37,800 Speaker 3: We don't really have any proof that nation's blood supply 130 00:07:37,960 --> 00:07:38,720 Speaker 3: is contaminated. 131 00:07:38,800 --> 00:07:42,240 Speaker 10: If there's even one infected unit, it's going to infect 132 00:07:42,280 --> 00:07:42,920 Speaker 10: the whole thing. 133 00:07:43,280 --> 00:07:45,440 Speaker 6: There were enough people dying in the community that in 134 00:07:45,680 --> 00:07:48,040 Speaker 6: your number was going to come up at some point. 135 00:07:49,680 --> 00:07:53,520 Speaker 1: In this episode. AIDS puts America's blood supply in jeopardy, 136 00:07:54,240 --> 00:07:56,840 Speaker 1: but the absence of a consensus around what causes the 137 00:07:56,840 --> 00:08:10,920 Speaker 1: disease makes it impossible to contain the spread. The term 138 00:08:11,040 --> 00:08:13,679 Speaker 1: canary in the coal mine comes from an old method 139 00:08:13,720 --> 00:08:18,320 Speaker 1: of detecting poisonous gases. Miners used to bring caged canaries 140 00:08:18,320 --> 00:08:22,119 Speaker 1: with them into mines, and because gases kill canaries faster 141 00:08:22,200 --> 00:08:25,320 Speaker 1: than they kill humans, the miners knew to get out 142 00:08:25,360 --> 00:08:30,640 Speaker 1: immediately if one of the canaries keeled over. People with 143 00:08:30,720 --> 00:08:33,840 Speaker 1: chemophilia are often referred to as the canaries in the 144 00:08:33,840 --> 00:08:35,839 Speaker 1: coal mine of bloodborne diseases. 145 00:08:36,440 --> 00:08:39,520 Speaker 11: If anybody are going to get a blood born disease first, 146 00:08:39,520 --> 00:08:42,679 Speaker 11: it's going to be patients with hemophilia, because they get 147 00:08:42,720 --> 00:08:43,160 Speaker 11: them all. 148 00:08:44,080 --> 00:08:47,680 Speaker 1: This is doctor Bruce Evatt in nineteen eighty one. He 149 00:08:47,840 --> 00:08:50,400 Speaker 1: was working at the Centers for Disease Control, where he 150 00:08:50,480 --> 00:08:53,960 Speaker 1: served as a point man on the hemophilia community. Evatt 151 00:08:54,040 --> 00:08:57,360 Speaker 1: had joined the CDC in the mid seventies, a strange 152 00:08:57,400 --> 00:09:00,640 Speaker 1: period when the agencies seemed to be losing its relevant. 153 00:09:00,840 --> 00:09:04,320 Speaker 11: The infectious disease community at that point felt that for 154 00:09:04,400 --> 00:09:08,880 Speaker 11: the most part, infectious diseases were conquered. The arrogance was 155 00:09:09,080 --> 00:09:12,240 Speaker 11: that there were no more infectious diseases. We really didn't 156 00:09:12,280 --> 00:09:13,880 Speaker 11: need a CDC anymore. 157 00:09:14,400 --> 00:09:17,640 Speaker 1: But then a new disease appeared on the CDC's radar. 158 00:09:18,640 --> 00:09:21,960 Speaker 1: As you've heard, the disease was initially observed in gay men. 159 00:09:22,840 --> 00:09:26,280 Speaker 1: Then it started showing up in other populations like injecting 160 00:09:26,320 --> 00:09:29,920 Speaker 1: drug users and people from Haiti. For a long time, 161 00:09:30,320 --> 00:09:32,960 Speaker 1: no one could figure out what was making all these 162 00:09:32,960 --> 00:09:33,600 Speaker 1: people sick. 163 00:09:34,000 --> 00:09:37,520 Speaker 12: Investigators have examined the habits of homosexuals for clues. The 164 00:09:37,559 --> 00:09:40,400 Speaker 12: best guess is that some infectious agent is causing it. 165 00:09:41,160 --> 00:09:43,839 Speaker 1: Some scientists feared from the start that the culprit was 166 00:09:43,880 --> 00:09:46,960 Speaker 1: a blood borne virus, but that was just a theory. 167 00:09:47,360 --> 00:09:52,040 Speaker 11: There was no general agreement in the scientific community as 168 00:09:52,160 --> 00:09:55,640 Speaker 11: what this disease was, whether it was even infectious. Okay, 169 00:09:56,160 --> 00:10:00,400 Speaker 11: and there were all kinds of postulations being put on, 170 00:10:01,360 --> 00:10:04,160 Speaker 11: and everybody wanted to win the Nobel Prize by getting 171 00:10:04,160 --> 00:10:05,400 Speaker 11: the correct one out there. 172 00:10:05,600 --> 00:10:08,240 Speaker 12: Researchers are now studying blood and other samples from the 173 00:10:08,280 --> 00:10:11,400 Speaker 12: victims trying to learn what is causing the disease. So 174 00:10:11,480 --> 00:10:12,760 Speaker 12: far they have had no luck. 175 00:10:13,720 --> 00:10:16,400 Speaker 1: This was more or less the situation in January of 176 00:10:16,480 --> 00:10:20,199 Speaker 1: nineteen eighty two when Evitt received an alarming phone call 177 00:10:20,280 --> 00:10:26,240 Speaker 1: from Miami, Florida. The person calling was a doctor who 178 00:10:26,240 --> 00:10:29,839 Speaker 1: had lost a patient to numasistus pneumonia. Unlike so many 179 00:10:29,920 --> 00:10:32,760 Speaker 1: others who had recently died of the same thing, this 180 00:10:32,840 --> 00:10:36,440 Speaker 1: patient was a straight, married man. The reason the doctor 181 00:10:36,440 --> 00:10:38,960 Speaker 1: in Miami thought to call Bruce Evitt was that the 182 00:10:38,960 --> 00:10:41,720 Speaker 1: patient also had hemophilia. 183 00:10:41,320 --> 00:10:43,680 Speaker 11: And he says, I've got a patient I think that 184 00:10:43,920 --> 00:10:49,480 Speaker 11: died from contaminated factor. The patient had all these symptoms, 185 00:10:50,360 --> 00:10:54,600 Speaker 11: and he was not a homosexual, and he died before 186 00:10:54,600 --> 00:10:56,079 Speaker 11: we could make a diagnosis. 187 00:10:56,880 --> 00:11:00,160 Speaker 1: The doctor suspected the source of the infection was clotting factor. 188 00:11:00,960 --> 00:11:04,319 Speaker 1: That put Evit on high alert if more cases of 189 00:11:04,320 --> 00:11:07,559 Speaker 1: pneumacistus were to start showing up in patients with hemophilia. 190 00:11:08,120 --> 00:11:12,120 Speaker 1: The ramifications would be grave for starters, it would bolster 191 00:11:12,200 --> 00:11:14,800 Speaker 1: the theory that the new disease was a blood born virus, 192 00:11:15,720 --> 00:11:18,480 Speaker 1: and it could mean that the country's entire blood supply 193 00:11:18,679 --> 00:11:23,679 Speaker 1: was compromised. Before long, Evatt heard about several more suspected 194 00:11:23,720 --> 00:11:24,559 Speaker 1: cases and. 195 00:11:24,600 --> 00:11:28,679 Speaker 11: Suddenly, bang bang bang, three of them within a short 196 00:11:28,720 --> 00:11:31,600 Speaker 11: period of time. That you could excuse one case of 197 00:11:31,720 --> 00:11:36,319 Speaker 11: hemophilia with this syndrome, but three, and if you got more, 198 00:11:37,000 --> 00:11:40,040 Speaker 11: you know, the odds were going through the roof in 199 00:11:40,160 --> 00:11:41,400 Speaker 11: terms of probability. 200 00:11:42,760 --> 00:11:45,760 Speaker 1: Ev It became convinced that the new disease had to 201 00:11:45,800 --> 00:11:49,360 Speaker 1: be bloodborne. That meant he needed to warn the blood 202 00:11:49,360 --> 00:11:59,240 Speaker 1: industry right away. The blood industry is made up of 203 00:11:59,320 --> 00:12:03,439 Speaker 1: two basic silos. On the one hand, there are nonprofits 204 00:12:03,520 --> 00:12:07,319 Speaker 1: like the Red Cross, which rely on donations. Then there 205 00:12:07,320 --> 00:12:09,840 Speaker 1: are plasma companies that pay people for their blood. 206 00:12:10,240 --> 00:12:12,960 Speaker 7: Through its network of donor centers around the country, the 207 00:12:12,960 --> 00:12:15,839 Speaker 7: Red Cross collects over one half of the nation's hull 208 00:12:15,880 --> 00:12:16,560 Speaker 7: blood supply. 209 00:12:17,200 --> 00:12:20,120 Speaker 1: If you donate to the Red Cross or another nonprofit 210 00:12:20,240 --> 00:12:24,720 Speaker 1: blood bank, you're giving what's called whole blood. Whole blood 211 00:12:24,800 --> 00:12:27,480 Speaker 1: is used for people who are undergoing surgery or who 212 00:12:27,520 --> 00:12:29,160 Speaker 1: have lost a lot of their own blood as a 213 00:12:29,200 --> 00:12:31,040 Speaker 1: result of, say, a car accident. 214 00:12:31,280 --> 00:12:33,920 Speaker 2: Hi, this is Bob, Oh, please pretch now to visit 215 00:12:33,960 --> 00:12:36,000 Speaker 2: your local hospital or community blood bank. 216 00:12:36,679 --> 00:12:39,440 Speaker 1: Unlike the blood banks, the for profit companies in the 217 00:12:39,440 --> 00:12:43,199 Speaker 1: blood industry pay people for their blood, or, more accurately, 218 00:12:43,360 --> 00:12:47,439 Speaker 1: they pay for their plasma. Plasma is the vital ingredient 219 00:12:47,520 --> 00:12:51,160 Speaker 1: in clotting factor, which means people with hemophilia require a 220 00:12:51,280 --> 00:12:55,000 Speaker 1: huge amount of it to live healthy lives. Producing a 221 00:12:55,040 --> 00:12:58,440 Speaker 1: single year's worth of factor for one person can require 222 00:12:58,559 --> 00:13:02,920 Speaker 1: more than a thousand indivi vidual plasma donations. There simply 223 00:13:02,960 --> 00:13:05,839 Speaker 1: aren't enough altruistic people in the world to meet that 224 00:13:05,920 --> 00:13:10,199 Speaker 1: level of demand through donations alone. But paying for plasma 225 00:13:10,360 --> 00:13:13,400 Speaker 1: comes with its own unique risks. It's the poor who 226 00:13:13,440 --> 00:13:16,320 Speaker 1: line up before dawn waiting to sell their plasma raw 227 00:13:16,360 --> 00:13:18,280 Speaker 1: material for the blood company's products. 228 00:13:18,920 --> 00:13:21,520 Speaker 8: If you're paying somebody for their blood, you're going to 229 00:13:21,559 --> 00:13:24,199 Speaker 8: attract people who need the money desperately enough to want 230 00:13:24,240 --> 00:13:25,000 Speaker 8: to give their blood. 231 00:13:25,600 --> 00:13:28,920 Speaker 1: Douglas Starr is the author of Blood, An Epic History 232 00:13:28,960 --> 00:13:30,280 Speaker 1: of Medicine and Commerce. 233 00:13:31,160 --> 00:13:33,520 Speaker 8: Where are they going to find people who are willing 234 00:13:33,559 --> 00:13:34,520 Speaker 8: to sell plasma? 235 00:13:35,040 --> 00:13:35,400 Speaker 11: Well? 236 00:13:35,559 --> 00:13:38,640 Speaker 7: Skid Row Los Angeles and on the city's skid row, 237 00:13:38,920 --> 00:13:40,840 Speaker 7: a corner of that world blood market. 238 00:13:41,040 --> 00:13:44,160 Speaker 8: The poor, the alcoholics, and the drug addicts sell their plasma, 239 00:13:44,280 --> 00:13:47,760 Speaker 8: and that population tends to have higher rates of diseases. 240 00:13:49,720 --> 00:13:53,960 Speaker 1: Throughout the nineteen sixties and seventies, plasma companies opened collection 241 00:13:54,120 --> 00:13:58,400 Speaker 1: centers in marginalized communities across the country. They also took 242 00:13:58,440 --> 00:14:01,280 Speaker 1: their operations into a Matamerica's prisons. 243 00:14:01,240 --> 00:14:03,600 Speaker 9: Prisoners are able to earn a little money to buy 244 00:14:03,640 --> 00:14:05,840 Speaker 9: the nicety, truth based and smacks. 245 00:14:06,000 --> 00:14:07,640 Speaker 6: They buy it with their blood. 246 00:14:08,679 --> 00:14:11,440 Speaker 1: Donna Shaw is a journalist who wrote about this practice 247 00:14:11,480 --> 00:14:13,360 Speaker 1: in her book Blood on Their Hands. 248 00:14:13,880 --> 00:14:18,040 Speaker 10: These commercial blood centers were for profit companies that were 249 00:14:18,040 --> 00:14:21,920 Speaker 10: allowed to operate inside of these state prisons. 250 00:14:22,160 --> 00:14:24,640 Speaker 9: They're paid about eight dollars a leter. They get six 251 00:14:24,680 --> 00:14:26,600 Speaker 9: dollars of the money. The rest goes under the ind 252 00:14:26,640 --> 00:14:27,840 Speaker 9: Maade welfare upon. 253 00:14:28,200 --> 00:14:31,000 Speaker 1: The prevalence of blood born diseases tends to be higher 254 00:14:31,040 --> 00:14:34,360 Speaker 1: than average among people in prison. If the new disease 255 00:14:34,520 --> 00:14:37,800 Speaker 1: really was a blood born virus, that meant a lot 256 00:14:37,840 --> 00:14:40,280 Speaker 1: of the plasma being bought and sold by the plasma 257 00:14:40,280 --> 00:14:42,640 Speaker 1: companies was at high risk for contamination. 258 00:14:43,160 --> 00:14:46,840 Speaker 10: They're not combining one or two or a dozen units 259 00:14:46,840 --> 00:14:51,440 Speaker 10: of plasma. They're combining thousands and thousands of them in 260 00:14:51,480 --> 00:14:55,960 Speaker 10: these huge vats, right, and so if there's even one 261 00:14:56,080 --> 00:15:00,000 Speaker 10: infected unit in that big vat, it's going to infect 262 00:15:00,280 --> 00:15:00,920 Speaker 10: the whole thing. 263 00:15:11,040 --> 00:15:14,200 Speaker 1: Bruce Evett at the CDC was deeply concerned about the 264 00:15:14,240 --> 00:15:18,040 Speaker 1: plasma companies, but he was also worried about nonprofit blood 265 00:15:18,080 --> 00:15:21,400 Speaker 1: banks like the Red Cross. In cities like New York 266 00:15:21,440 --> 00:15:24,400 Speaker 1: and San Francisco, gay men were known for being a 267 00:15:24,440 --> 00:15:29,320 Speaker 1: particularly reliable cohort of blood donors. At Erwin Memorial, the 268 00:15:29,400 --> 00:15:32,880 Speaker 1: largest nonprofit blood bank in San Francisco, they made up 269 00:15:32,960 --> 00:15:36,600 Speaker 1: twenty percent of the donor pool. If the new disease 270 00:15:36,720 --> 00:15:40,480 Speaker 1: was being spread through blood and it was disproportionately showing 271 00:15:40,600 --> 00:15:43,560 Speaker 1: up in gay men, it seemed to evit like a 272 00:15:43,560 --> 00:15:47,680 Speaker 1: recipe for disaster. And because the whole blood collected by 273 00:15:47,720 --> 00:15:50,840 Speaker 1: the nonprofits was used in a wide variety of patients, 274 00:15:51,320 --> 00:15:54,160 Speaker 1: it wasn't just people with hemophilia who were at risk. 275 00:15:55,000 --> 00:15:57,320 Speaker 1: Anyone who went to the hospital and needed a blood 276 00:15:57,320 --> 00:16:06,840 Speaker 1: transfusion could be infected to On July twenty seventh, nineteen 277 00:16:06,880 --> 00:16:10,040 Speaker 1: eighty two, Evitt and a few colleagues from the CDC 278 00:16:10,360 --> 00:16:13,480 Speaker 1: traveled to Washington for an emergency meeting convened by the 279 00:16:13,480 --> 00:16:17,400 Speaker 1: Assistant Secretary of Health. It was attended by leaders for 280 00:16:17,480 --> 00:16:19,880 Speaker 1: the blood industry as well as the gay community and 281 00:16:19,920 --> 00:16:24,720 Speaker 1: the hemophilia community. Representatives from the FDA, which had regulatory 282 00:16:24,760 --> 00:16:28,800 Speaker 1: power over the blood industry, were also there. Ewitt gave 283 00:16:28,840 --> 00:16:31,960 Speaker 1: a presentation aimed at convincing people that the new disease 284 00:16:32,120 --> 00:16:33,880 Speaker 1: was being spread through blood. 285 00:16:34,280 --> 00:16:36,040 Speaker 11: There was a lot of skepticism. It was a new 286 00:16:36,080 --> 00:16:39,720 Speaker 11: idea introduced, okay, that this was a new infectious agent, 287 00:16:40,040 --> 00:16:44,160 Speaker 11: that it was different from all other infectious agents, and 288 00:16:44,320 --> 00:16:47,520 Speaker 11: that it was being transmitted by blood. Well, the first 289 00:16:47,560 --> 00:16:50,400 Speaker 11: time anybody hears that, they're going to be skeptical. 290 00:16:51,120 --> 00:16:54,240 Speaker 1: Eviitt urged the blood industry to start screening out any 291 00:16:54,280 --> 00:16:56,680 Speaker 1: donors who came from groups that appeared to be at 292 00:16:56,720 --> 00:17:01,000 Speaker 1: special risk. That included injecting drug users, gay men, and 293 00:17:01,120 --> 00:17:04,919 Speaker 1: Haitian Americans, a community that was notably not represented at 294 00:17:04,920 --> 00:17:10,159 Speaker 1: the hearing. Evatt's proposal received immediate pushback. Here again is 295 00:17:10,240 --> 00:17:11,560 Speaker 1: journalist Douglas Starr. 296 00:17:12,359 --> 00:17:14,840 Speaker 8: Gay donors happened to be very good donors. They were 297 00:17:14,920 --> 00:17:17,760 Speaker 8: very civic minded, as a group, and by excluding them, 298 00:17:17,800 --> 00:17:20,920 Speaker 8: you're casting a pall over their citizenship, and it wasn't right. 299 00:17:20,960 --> 00:17:23,119 Speaker 8: The other groups they wanted us to exclude also was 300 00:17:23,160 --> 00:17:27,960 Speaker 8: IVY drug users, So gay people were feeling, you're lumping 301 00:17:28,040 --> 00:17:31,760 Speaker 8: us with IVY drug users when we're good citizens. It's 302 00:17:31,760 --> 00:17:32,200 Speaker 8: not right. 303 00:17:33,320 --> 00:17:36,720 Speaker 1: To many, the idea of screening out gay and bisexual 304 00:17:36,760 --> 00:17:39,440 Speaker 1: men from the donor pool seemed like it would reinforce 305 00:17:39,520 --> 00:17:43,160 Speaker 1: homophobic assumptions among the general public that all men who 306 00:17:43,160 --> 00:17:47,680 Speaker 1: had sex with men were infected and therefore dangerous. After 307 00:17:47,720 --> 00:17:51,000 Speaker 1: the meeting in Washington, one gay advocacy group issued a 308 00:17:51,040 --> 00:17:54,520 Speaker 1: statement arguing that screening out gay men as blood donors 309 00:17:54,640 --> 00:17:58,160 Speaker 1: would be reminiscent of misagenation blood laws that divided black 310 00:17:58,200 --> 00:17:59,240 Speaker 1: blood from white. 311 00:18:00,000 --> 00:18:04,320 Speaker 13: A community is eager to have reason on the project, 312 00:18:04,800 --> 00:18:07,680 Speaker 13: not the kind of rhetoric and scapegoating that the proposed 313 00:18:08,080 --> 00:18:10,200 Speaker 13: blood policy seems to indicate. 314 00:18:20,200 --> 00:18:23,640 Speaker 1: Representatives from the blood industry weren't eager to introduce screening 315 00:18:23,640 --> 00:18:27,080 Speaker 1: procedures either. Not only would it be expensive, it would 316 00:18:27,119 --> 00:18:31,480 Speaker 1: also reduce their inventory. Plus there were still only three 317 00:18:31,640 --> 00:18:34,520 Speaker 1: known cases of people with heemophilia coming down with the 318 00:18:34,560 --> 00:18:38,600 Speaker 1: new disease. It seemed totally possible that Bruce Evatt from 319 00:18:38,640 --> 00:18:43,720 Speaker 1: the CDC was overreacting. Perhaps most surprisingly, the leaders of 320 00:18:43,760 --> 00:18:47,480 Speaker 1: the National Humophilia Foundation, the country's largest advocacy group for 321 00:18:47,520 --> 00:18:51,960 Speaker 1: people with chemophilia, were also not inclined to heed Eviitt's warnings. 322 00:18:53,000 --> 00:18:55,680 Speaker 1: Their problem was that if Ebitt was right, it could 323 00:18:55,720 --> 00:18:58,840 Speaker 1: mean giving up the clotting factor that had transformed so 324 00:18:59,000 --> 00:18:59,760 Speaker 1: many patients. 325 00:18:59,840 --> 00:19:04,479 Speaker 11: Line, so when you're talking to the hemophila community, you 326 00:19:04,520 --> 00:19:08,040 Speaker 11: know they don't want to hear this. Science has given 327 00:19:08,080 --> 00:19:11,359 Speaker 11: them a drug that has been a miracle drug for 328 00:19:11,440 --> 00:19:14,560 Speaker 11: these patients, and now you're can tell them it's no good, 329 00:19:15,200 --> 00:19:17,800 Speaker 11: it may be killing them. And it's only on the 330 00:19:17,840 --> 00:19:21,840 Speaker 11: basis that three patients. And so you had to repeat 331 00:19:21,880 --> 00:19:23,800 Speaker 11: it again and again and again and again and again again, 332 00:19:24,280 --> 00:19:27,240 Speaker 11: and each time you begin to get a few more converts. 333 00:19:28,000 --> 00:19:30,920 Speaker 11: But there was a large part of the hemophilic community 334 00:19:30,960 --> 00:19:31,679 Speaker 11: didn't want to hear it. 335 00:19:34,760 --> 00:19:36,960 Speaker 1: Val Bias, whom you heard from at the beginning of 336 00:19:36,960 --> 00:19:40,719 Speaker 1: this episode, says he understands why leaders from the hemophilia 337 00:19:40,760 --> 00:19:42,600 Speaker 1: community were so skeptical at the time. 338 00:19:43,440 --> 00:19:46,040 Speaker 6: I think people make the best decisions they can with 339 00:19:46,119 --> 00:19:49,960 Speaker 6: the information they have, and I think another prevailing piece 340 00:19:50,080 --> 00:19:54,600 Speaker 6: of their experience was they had lived through hemophilia with 341 00:19:54,640 --> 00:19:58,560 Speaker 6: no treatment. They knew what that was like, you know, 342 00:19:58,640 --> 00:20:01,600 Speaker 6: they knew what those life inspects sencies were like, and 343 00:20:02,480 --> 00:20:04,720 Speaker 6: they did not want to return to that. They didn't 344 00:20:04,760 --> 00:20:08,640 Speaker 6: have an alternative for their patients if they told everybody 345 00:20:08,640 --> 00:20:11,119 Speaker 6: to stop treating but to return to that life. 346 00:20:10,880 --> 00:20:15,840 Speaker 1: Before facing resistance on all sides, Bruce Evitt and his 347 00:20:15,920 --> 00:20:19,440 Speaker 1: CDC colleagues felt sure that the crisis was only going 348 00:20:19,480 --> 00:20:29,960 Speaker 1: to get worse. By the fall of nineteen eighty two, 349 00:20:30,320 --> 00:20:34,120 Speaker 1: the CDC had identified four more people with hemophilia who 350 00:20:34,119 --> 00:20:38,040 Speaker 1: had contracted AIDS. That brought the total number of known 351 00:20:38,080 --> 00:20:39,119 Speaker 1: cases to seven. 352 00:20:39,680 --> 00:20:42,800 Speaker 2: Doctors believe they found the first solid evidence this disease 353 00:20:42,880 --> 00:20:46,520 Speaker 2: is spreading to new segments of the population by blood transfusion. 354 00:20:46,920 --> 00:20:49,960 Speaker 1: From Evatt's point of view, either the FDA had to 355 00:20:50,000 --> 00:20:53,200 Speaker 1: tell the blood industry to stop accepting blood and plasma 356 00:20:53,200 --> 00:20:56,320 Speaker 1: from people who were at high risk for AIDS, or 357 00:20:56,480 --> 00:21:00,520 Speaker 1: the blood industry needed to do it voluntarily. Over the 358 00:21:00,560 --> 00:21:04,360 Speaker 1: next several months, Evatt and his colleagues traveled across the country, 359 00:21:04,480 --> 00:21:07,639 Speaker 1: privately urging leaders of plasma companies and blood banks to 360 00:21:07,720 --> 00:21:12,000 Speaker 1: adopt new screening procedures because of budget cuts at the CDC, 361 00:21:12,600 --> 00:21:14,000 Speaker 1: Evitt paid his own way. 362 00:21:14,920 --> 00:21:18,000 Speaker 11: It was really a busy time because I was traveling 363 00:21:18,000 --> 00:21:21,760 Speaker 11: most of the time and then trying to carry on 364 00:21:21,840 --> 00:21:25,760 Speaker 11: the stuff at the office at the same time. Usually 365 00:21:25,760 --> 00:21:26,679 Speaker 11: I was so tired. 366 00:21:29,480 --> 00:21:33,960 Speaker 1: Only one pharmaceutical company, the produced Factor, took Evatt's warnings seriously. 367 00:21:34,720 --> 00:21:38,240 Speaker 1: President of Alpha Therapeutics, Tom Drees said he was knocked 368 00:21:38,240 --> 00:21:42,520 Speaker 1: off his chair by the data suggesting bloodborne transmission. Drease 369 00:21:42,640 --> 00:21:45,639 Speaker 1: agreed to begin screening out high risk donors right away. 370 00:21:46,080 --> 00:21:49,840 Speaker 14: The difference in our screening program started in December of 371 00:21:49,880 --> 00:21:54,400 Speaker 14: eighty two was it was direct questioning. Usually we'd handed 372 00:21:54,440 --> 00:21:56,600 Speaker 14: the donor a sheet, he'd check out the things, but 373 00:21:56,680 --> 00:21:59,720 Speaker 14: this was now looking him in the eye rather delicate 374 00:21:59,720 --> 00:22:02,520 Speaker 14: such way should say are you a male homosexual? Are 375 00:22:02,520 --> 00:22:03,520 Speaker 14: you a drug abuser? 376 00:22:04,680 --> 00:22:07,879 Speaker 1: At first, the heads of other plasma companies were furious 377 00:22:07,880 --> 00:22:13,159 Speaker 1: with Tom Treese's decision, but eventually they followed suit. Evatt 378 00:22:13,200 --> 00:22:16,000 Speaker 1: faced more intense resistance from the nonprofit sector of the 379 00:22:16,000 --> 00:22:19,080 Speaker 1: blood industry. The blood banks, like the Red Cross, which 380 00:22:19,119 --> 00:22:22,800 Speaker 1: relied on donations for their inventory. One of the most 381 00:22:22,840 --> 00:22:26,879 Speaker 1: outspoken critics of donor screening was doctor Joseph Bovee, a 382 00:22:26,960 --> 00:22:29,679 Speaker 1: Yale Medical School professor who led one of the largest 383 00:22:29,680 --> 00:22:33,720 Speaker 1: blood banking associations in the country and chaired the FDA 384 00:22:33,760 --> 00:22:35,640 Speaker 1: committee dedicated to blood safety. 385 00:22:36,000 --> 00:22:39,680 Speaker 3: There's not enough evidence to finger any population or a 386 00:22:39,760 --> 00:22:43,439 Speaker 3: subset of individuals and say this group should not be 387 00:22:43,520 --> 00:22:46,760 Speaker 3: allowed to donate blood. 388 00:22:46,880 --> 00:22:50,480 Speaker 1: To understand where blood bankers like Bovy were coming from, 389 00:22:50,600 --> 00:22:53,840 Speaker 1: it's important to consider how difficult it already was for 390 00:22:53,920 --> 00:23:00,560 Speaker 1: them to find enough donors to satisfy demand of blood 391 00:23:00,560 --> 00:23:02,840 Speaker 1: donation had come during World War II. 392 00:23:03,920 --> 00:23:07,840 Speaker 15: In America, patriotic citizens are giving their blood to save 393 00:23:07,880 --> 00:23:09,680 Speaker 15: the lives of their soldiers and sailors. 394 00:23:10,240 --> 00:23:13,320 Speaker 1: Pretty much ever since, blood banks have been struggling to 395 00:23:13,359 --> 00:23:15,320 Speaker 1: attract as many donors as they needed. 396 00:23:15,680 --> 00:23:18,200 Speaker 7: For the past quarter century, on government request, the Red 397 00:23:18,240 --> 00:23:22,160 Speaker 7: Cross has tried to organize community blood banks with voluntary donors. 398 00:23:22,359 --> 00:23:24,720 Speaker 7: They've managed to collect less than half of these seven 399 00:23:24,760 --> 00:23:26,280 Speaker 7: million pints needed annually. 400 00:23:26,560 --> 00:23:29,240 Speaker 1: Journalist Douglas Starr again, after World. 401 00:23:29,119 --> 00:23:31,880 Speaker 8: War Two, it was very difficult to collect blood. That's 402 00:23:31,960 --> 00:23:34,800 Speaker 8: tied into the decline of factories, the decline of unions, 403 00:23:35,080 --> 00:23:38,359 Speaker 8: the fractionating the American public were just not the collective 404 00:23:38,359 --> 00:23:40,800 Speaker 8: that we used to be, so even in eighty one 405 00:23:40,960 --> 00:23:44,280 Speaker 8: eighty two, blood bankers were having problems getting enough blood, 406 00:23:44,359 --> 00:23:45,520 Speaker 8: so it was always a crisis. 407 00:23:48,200 --> 00:23:51,320 Speaker 1: Making it harder for people to donate blood would inevitably 408 00:23:51,359 --> 00:23:56,080 Speaker 1: reduce the blood banks supply. Additionally, some blood bankers believe 409 00:23:56,119 --> 00:23:58,679 Speaker 1: that making a big deal about AIDS during the donation 410 00:23:58,840 --> 00:24:03,040 Speaker 1: process would create an association between giving blood and contracting 411 00:24:03,080 --> 00:24:07,080 Speaker 1: the disease that in turn would scare away donors who 412 00:24:07,119 --> 00:24:11,480 Speaker 1: weren't even in high risk groups. So Joseph Bovie and 413 00:24:11,520 --> 00:24:14,320 Speaker 1: the blood banks continued to resist Bruce Evitt and his 414 00:24:14,359 --> 00:24:15,400 Speaker 1: CDC colleagues. 415 00:24:15,720 --> 00:24:19,679 Speaker 3: The evidence for this, in my view, is very weak 416 00:24:19,880 --> 00:24:23,040 Speaker 3: and very early. We don't really have any proof yet 417 00:24:23,119 --> 00:24:25,600 Speaker 3: that the nation's blood supply is contaminated. 418 00:24:26,680 --> 00:24:29,440 Speaker 1: If the blood banks were going to jeopardize their already 419 00:24:29,440 --> 00:24:33,560 Speaker 1: limited blood supply, they wanted definitive proof that AIDS was 420 00:24:33,600 --> 00:24:37,600 Speaker 1: being spread through their products. They wanted to see under 421 00:24:37,600 --> 00:24:41,280 Speaker 1: a microscope the infectious agent that was supposedly causing AIDS. 422 00:24:42,359 --> 00:24:45,720 Speaker 1: Even with seven cases of people with hemophilia catching the disease, 423 00:24:46,480 --> 00:24:51,960 Speaker 1: all Evit had was a theory. 424 00:24:54,920 --> 00:24:57,480 Speaker 7: I was worried today that a new and frightening disease 425 00:24:57,600 --> 00:25:00,880 Speaker 7: as being spread by blood transfusions. How doctors are seeing 426 00:25:00,880 --> 00:25:01,600 Speaker 7: it in children. 427 00:25:02,000 --> 00:25:05,760 Speaker 1: In October of nineteen eighty two, new evidence emerged that 428 00:25:05,800 --> 00:25:10,400 Speaker 1: Everett's theory was right. That month, Marcus Conant, the San 429 00:25:10,400 --> 00:25:13,920 Speaker 1: Francisco doctor you heard from in our previous episode, hosted 430 00:25:13,960 --> 00:25:18,560 Speaker 1: one of the first national conferences on AIDS. During the conference, 431 00:25:18,800 --> 00:25:21,600 Speaker 1: one of Conant's colleagues heard a story about a baby 432 00:25:21,640 --> 00:25:24,760 Speaker 1: boy who appeared to have contracted AIDS after getting a 433 00:25:24,760 --> 00:25:25,680 Speaker 1: blood transfusion. 434 00:25:26,200 --> 00:25:29,560 Speaker 16: He had neonatal jaundice, and so they had given him 435 00:25:29,560 --> 00:25:33,440 Speaker 16: a blood transfusion, and following that transfusion, he became ill, 436 00:25:33,800 --> 00:25:37,119 Speaker 16: and he developed what appeared to be AIDS, and his 437 00:25:37,320 --> 00:25:43,480 Speaker 16: only conceivable vector, the only conceivable course of infection, was 438 00:25:43,560 --> 00:25:44,640 Speaker 16: from the transfusion. 439 00:25:46,760 --> 00:25:50,399 Speaker 1: When investigators tracked down the baby's donors, they found that 440 00:25:50,480 --> 00:25:52,400 Speaker 1: one of them was a forty eight year old man 441 00:25:52,440 --> 00:25:56,320 Speaker 1: who had recently died. Based on his medical history, it 442 00:25:56,359 --> 00:25:59,159 Speaker 1: was almost certain that he had died of AIDS and 443 00:25:59,200 --> 00:26:01,080 Speaker 1: that he had passed it up on to the baby boy. 444 00:26:01,680 --> 00:26:05,000 Speaker 2: At San Francisco's Moffett Hospital, doctors are treating a twenty 445 00:26:05,040 --> 00:26:08,800 Speaker 2: month old boy, possibly the youngest victim ever of AIDE syndrome. 446 00:26:09,160 --> 00:26:11,240 Speaker 16: I mean that was kind of the final a nail 447 00:26:11,359 --> 00:26:13,680 Speaker 16: in the coffin, if you will. There had been other 448 00:26:13,960 --> 00:26:17,080 Speaker 16: suggestions that this thing was a bloodborne disease, but that 449 00:26:17,200 --> 00:26:18,800 Speaker 16: baby's case clinched it. 450 00:26:20,119 --> 00:26:22,520 Speaker 1: When worried about the baby got back to Bruce Evitt 451 00:26:22,520 --> 00:26:25,560 Speaker 1: at the CDC, he thought the conversation around the blood 452 00:26:25,560 --> 00:26:28,040 Speaker 1: supply was now going to change. 453 00:26:28,160 --> 00:26:31,119 Speaker 11: That was the case we thought would convince him. We 454 00:26:31,200 --> 00:26:33,280 Speaker 11: thought that'd be the slam doc. And so we called 455 00:26:33,280 --> 00:26:35,919 Speaker 11: this meeting and we thought this would just be pro former. 456 00:26:36,600 --> 00:26:40,680 Speaker 11: Thought he wouldn't be any any argument. You know, there 457 00:26:40,720 --> 00:26:42,560 Speaker 11: it is light out. 458 00:26:42,920 --> 00:26:46,879 Speaker 1: On January fourth, nineteen eighty three, Evitt and his CDC 459 00:26:46,960 --> 00:26:49,879 Speaker 1: colleagues brought together the same set of stakeholders who had 460 00:26:49,880 --> 00:26:53,400 Speaker 1: attended that ill fated meeting in Washington five months earlier. 461 00:26:54,400 --> 00:26:58,040 Speaker 1: Once again, a group of blood industry leaders gathered alongside 462 00:26:58,040 --> 00:27:01,920 Speaker 1: gay advocacy groups and represents of the hemophilia community. 463 00:27:02,720 --> 00:27:05,240 Speaker 4: These are all people who are interested in and working 464 00:27:05,240 --> 00:27:09,919 Speaker 4: on the problem of AIDS acquired immune deficiency syndrome. It 465 00:27:10,000 --> 00:27:10,600 Speaker 4: is a disease. 466 00:27:10,640 --> 00:27:13,560 Speaker 1: This time the meeting took place on the CDC's home 467 00:27:13,600 --> 00:27:16,959 Speaker 1: turf in Atlanta, Georgia, and it attracted more than one 468 00:27:17,000 --> 00:27:18,919 Speaker 1: hundred journalists and other observers. 469 00:27:19,560 --> 00:27:22,239 Speaker 4: When doctors and scientists are finished here, they still will 470 00:27:22,320 --> 00:27:25,120 Speaker 4: not know the cause of AIDS, but they are hoping 471 00:27:25,160 --> 00:27:27,399 Speaker 4: to come away from this meeting with one thing, and 472 00:27:27,440 --> 00:27:30,480 Speaker 4: that is a list of eventive measures once they hope 473 00:27:30,480 --> 00:27:32,040 Speaker 4: to target to the high risk groups. 474 00:27:32,600 --> 00:27:35,840 Speaker 1: The CDC's presentations began at eight thirty in the morning. 475 00:27:36,720 --> 00:27:40,240 Speaker 1: Evitt carefully laid out the latest evidence indicating that AIDS 476 00:27:40,320 --> 00:27:43,680 Speaker 1: was bloodborne. In addition to the baby boy, there were 477 00:27:43,720 --> 00:27:46,399 Speaker 1: now eight people with heemophilia who were known to have 478 00:27:46,440 --> 00:27:50,880 Speaker 1: developed AIDS. Then, one of Evatt's colleagues proposed a new 479 00:27:50,960 --> 00:27:55,119 Speaker 1: idea for screening out high risk donors. Instead of asking 480 00:27:55,119 --> 00:27:57,840 Speaker 1: people if they were gay or if they used injecting drugs, 481 00:27:58,359 --> 00:28:01,480 Speaker 1: the plasma companies and the blood could conduct a blood 482 00:28:01,520 --> 00:28:04,920 Speaker 1: test not for AIDS, since an AIDS test didn't exist, 483 00:28:05,280 --> 00:28:10,960 Speaker 1: but for another blood borne disease, hepatitis B. Douglas Starr explains, there. 484 00:28:10,880 --> 00:28:13,000 Speaker 8: Was this thought, you know a lot of people with 485 00:28:13,160 --> 00:28:17,480 Speaker 8: AIDS have hepatitis B. What if we do the hepatitis 486 00:28:17,560 --> 00:28:20,520 Speaker 8: test as sort of a surrogate for the AIDS test. 487 00:28:20,920 --> 00:28:22,879 Speaker 8: So the idea is, could we test donors for the 488 00:28:22,880 --> 00:28:25,680 Speaker 8: hepatitis core and rule them out even though we don't 489 00:28:25,720 --> 00:28:26,800 Speaker 8: know what causes AIDS. 490 00:28:27,640 --> 00:28:30,879 Speaker 1: It wouldn't be a perfect test, but the correlation between 491 00:28:30,880 --> 00:28:34,040 Speaker 1: people with AIDS and people carrying antibodies for hepatitis B 492 00:28:34,440 --> 00:28:39,080 Speaker 1: was very high nearly ninety percent. Until a real AIDS 493 00:28:39,080 --> 00:28:42,640 Speaker 1: test could be developed, it seemed like a strong interim solution. 494 00:28:45,800 --> 00:28:48,240 Speaker 1: The gay rights advocates of the meeting in Atlanta liked 495 00:28:48,280 --> 00:28:51,480 Speaker 1: the idea of testing the blood itself. It was better 496 00:28:51,520 --> 00:28:54,160 Speaker 1: than trying to ban entire groups of people from donating, 497 00:28:55,080 --> 00:28:57,560 Speaker 1: but the blood bankers rejected it, saying it would be 498 00:28:57,560 --> 00:29:01,480 Speaker 1: too expensive. One of them amated the testing every donor 499 00:29:01,520 --> 00:29:04,960 Speaker 1: for hepatitis B would cost the country's beleagued blood banks 500 00:29:05,200 --> 00:29:07,160 Speaker 1: one hundred million dollars a year. 501 00:29:07,760 --> 00:29:11,000 Speaker 11: Well, the blood bankers arguments were that here we were 502 00:29:11,040 --> 00:29:14,920 Speaker 11: asking them to disrupt their whole blood bank screening on 503 00:29:14,960 --> 00:29:19,440 Speaker 11: the basis of eight patients, and what everybody didn't recognize 504 00:29:19,480 --> 00:29:23,720 Speaker 11: at the time is how prevalent this disease was already 505 00:29:23,840 --> 00:29:24,680 Speaker 11: in the population. 506 00:29:25,880 --> 00:29:28,680 Speaker 1: To the blood bankers, the chance of getting aid through 507 00:29:28,680 --> 00:29:32,640 Speaker 1: the blood supply looked tiny, and preserving access to a 508 00:29:32,680 --> 00:29:37,120 Speaker 1: life saving product outweighed the risk. But to Ebitt, it 509 00:29:37,160 --> 00:29:39,720 Speaker 1: was clear that the eight patients were only the tip 510 00:29:39,800 --> 00:29:43,520 Speaker 1: of the iceberg, a terrifying proxy for all the as 511 00:29:43,600 --> 00:29:45,480 Speaker 1: yet undiagnosed cases out there. 512 00:29:46,240 --> 00:29:50,160 Speaker 8: When he saw cases go from two to four to eight, 513 00:29:50,480 --> 00:29:55,200 Speaker 8: that expresses a doubling rate. Epidemiologists in CDC don't just 514 00:29:55,240 --> 00:29:57,160 Speaker 8: look at raw numbers. They look at what is the 515 00:29:57,280 --> 00:30:01,360 Speaker 8: curve doing, and this curve was very steep. Whereas blood 516 00:30:01,360 --> 00:30:04,640 Speaker 8: bankers think of the word bank, they act like bankers. 517 00:30:05,040 --> 00:30:08,200 Speaker 8: They think of things like inventory and supply. So to 518 00:30:08,320 --> 00:30:11,000 Speaker 8: them and to people in the plasma industry who think 519 00:30:11,120 --> 00:30:16,880 Speaker 8: like CEOs, they're thinking eight cases is a concern, but 520 00:30:17,000 --> 00:30:21,080 Speaker 8: out of ten million transfusions, it's not that significant. Let's 521 00:30:21,160 --> 00:30:22,920 Speaker 8: keep an eye on it, but let's not ring the 522 00:30:22,960 --> 00:30:23,560 Speaker 8: alarm bell. 523 00:30:27,400 --> 00:30:31,160 Speaker 1: As the meeting in Atlanta dragged on, things got increasingly tense. 524 00:30:32,080 --> 00:30:34,480 Speaker 1: At one point, the president of a blood bank warned 525 00:30:34,520 --> 00:30:38,400 Speaker 1: Evitt not to overstate the facts. Eviitt felt he was 526 00:30:38,440 --> 00:30:40,680 Speaker 1: being called a bad scientist to his face. 527 00:30:41,600 --> 00:30:45,160 Speaker 11: That just made me absolutely furious. After all, we went 528 00:30:45,200 --> 00:30:47,760 Speaker 11: in and expecting to get well at least something. We 529 00:30:47,800 --> 00:30:51,160 Speaker 11: didn't get anything. I really got furious. I was very 530 00:30:51,160 --> 00:30:55,800 Speaker 11: difficult to hold my temper, but I never doubted that 531 00:30:55,840 --> 00:30:56,520 Speaker 11: we weren't right. 532 00:30:57,760 --> 00:31:00,640 Speaker 1: Eviitt realized that yet another meeting was going to end 533 00:31:00,640 --> 00:31:04,600 Speaker 1: in a stalemate. Ben one of his CDC colleagues, an 534 00:31:04,600 --> 00:31:07,960 Speaker 1: epidemiologist named Don Francis, lost his cool. 535 00:31:08,520 --> 00:31:11,440 Speaker 8: He famously banked his fist on the table and hollered, 536 00:31:11,760 --> 00:31:16,160 Speaker 8: how many people have to die? Is three enough? Six ' ten? 537 00:31:16,760 --> 00:31:19,200 Speaker 8: Is one hundred enough? Just give us the number so 538 00:31:19,240 --> 00:31:23,040 Speaker 8: we could set the threshold. And years later I connected 539 00:31:23,080 --> 00:31:25,880 Speaker 8: with Francis and he was still furious. He said, I 540 00:31:26,000 --> 00:31:28,880 Speaker 8: just couldn't believe these guys. It was like having a 541 00:31:28,920 --> 00:31:31,360 Speaker 8: bend in the train track and sitting there and you 542 00:31:31,440 --> 00:31:34,000 Speaker 8: hear the whistles and the singles are blinking, and the 543 00:31:34,040 --> 00:31:36,400 Speaker 8: tracks are beginning to shake, and they're saying there's no 544 00:31:36,480 --> 00:31:37,080 Speaker 8: train coming. 545 00:31:38,000 --> 00:31:41,080 Speaker 1: After the meeting, a Red Cross official wrote an internal 546 00:31:41,120 --> 00:31:44,200 Speaker 1: memo questioning not just Evatt and his colleagues, but the 547 00:31:44,360 --> 00:31:48,680 Speaker 1: entire CDC as an institution. It has long been noted. 548 00:31:48,760 --> 00:31:52,880 Speaker 1: The official wrote that CDC increasingly needs a major epidemic 549 00:31:53,000 --> 00:31:57,640 Speaker 1: to justify its existence. The memo suggested the CDC had 550 00:31:57,680 --> 00:32:01,040 Speaker 1: selfishly exaggerated the threat of AIDS in part so he 551 00:32:01,080 --> 00:32:04,760 Speaker 1: could get funding for a new fifteen million dollar virology lab. 552 00:32:05,840 --> 00:32:07,920 Speaker 1: When it came to AIDS in the blood supply, the 553 00:32:07,960 --> 00:32:11,880 Speaker 1: Red Cross official concluded, we cannot depend on the CDC 554 00:32:12,160 --> 00:32:22,280 Speaker 1: to provide scientific, objective, unbiased leadership. Nearly three months after 555 00:32:22,320 --> 00:32:26,040 Speaker 1: the meeting in Atlanta, the FDA finally issued guidelines for 556 00:32:26,080 --> 00:32:30,080 Speaker 1: the blood industry, but to Evitt they looked tepid, a 557 00:32:30,160 --> 00:32:32,600 Speaker 1: half step that fell far short of what he and 558 00:32:32,680 --> 00:32:36,840 Speaker 1: his colleagues have been calling for. Instead of mandating surrogate 559 00:32:36,880 --> 00:32:41,040 Speaker 1: tests to screen for hepatitis B or even questionnaires designed 560 00:32:41,040 --> 00:32:44,600 Speaker 1: to screen out high risk donors, the blood industry was 561 00:32:44,680 --> 00:32:49,200 Speaker 1: merely required to present educational materials about AIDS and ask 562 00:32:49,400 --> 00:32:52,880 Speaker 1: those in high risk groups not to give blood or plasma. 563 00:32:53,360 --> 00:32:56,440 Speaker 2: There is a new sign of the times, an appeal 564 00:32:56,520 --> 00:33:00,640 Speaker 2: that three diverse groups of potential donors not donate blood 565 00:33:00,800 --> 00:33:01,800 Speaker 2: or blood products. 566 00:33:02,360 --> 00:33:05,360 Speaker 1: Some blood banks did experiment with hepatitis B tests and 567 00:33:05,480 --> 00:33:09,080 Speaker 1: tougher questioning of donors, but for the most part, they 568 00:33:09,080 --> 00:33:11,880 Speaker 1: did little to prevent high risk groups from giving blood. 569 00:33:12,840 --> 00:33:16,160 Speaker 1: In June of nineteen eighty three, nearly six months after 570 00:33:16,200 --> 00:33:19,880 Speaker 1: the meeting in Atlanta, Blood Bank spokesman and FDA advisor 571 00:33:20,000 --> 00:33:23,400 Speaker 1: Joseph Bovie insisted once again that there was just too 572 00:33:23,480 --> 00:33:26,120 Speaker 1: much uncertainty to make any sudden moves. 573 00:33:26,680 --> 00:33:29,640 Speaker 3: If anyone has gotten AIDS from these transfusions, it's a 574 00:33:29,680 --> 00:33:32,920 Speaker 3: mere handful of people. Of course, in medicine, you can 575 00:33:32,960 --> 00:33:34,360 Speaker 3: never be sure of anything. 576 00:33:34,440 --> 00:33:35,480 Speaker 14: Really, are you. 577 00:33:35,600 --> 00:33:38,440 Speaker 13: Very concerned that if this trend continues there will be 578 00:33:38,680 --> 00:33:41,200 Speaker 13: significantly more risk to the blood supply. 579 00:33:41,640 --> 00:33:44,040 Speaker 3: I have trouble seeing a trend as yet. 580 00:33:47,080 --> 00:33:50,720 Speaker 1: The four profit companies that produced clotting factor also seemed 581 00:33:50,720 --> 00:33:52,320 Speaker 1: to want to do as little as they could get 582 00:33:52,320 --> 00:33:56,680 Speaker 1: away with. Instead of testing donors for hepatitis B, most 583 00:33:56,720 --> 00:34:01,680 Speaker 1: commercial plasma centers continue to rely on questionnaires. This had 584 00:34:01,680 --> 00:34:05,240 Speaker 1: the effect of furthering stigma against gay men, drug users, 585 00:34:05,280 --> 00:34:09,960 Speaker 1: and Haitian immigrants, while also holding individual donors responsible for 586 00:34:10,000 --> 00:34:13,799 Speaker 1: protecting the blood supply. Remember, at this point, there was 587 00:34:13,840 --> 00:34:17,239 Speaker 1: still no AIDS test available, and therefore no way to 588 00:34:17,320 --> 00:34:20,200 Speaker 1: know if you had the disease unless you were showing symptoms. 589 00:34:21,280 --> 00:34:24,960 Speaker 1: More than once people who sold plasma were later discovered 590 00:34:24,960 --> 00:34:29,160 Speaker 1: to have AIDS, leading to recalls of entire batches of factor. 591 00:34:29,640 --> 00:34:33,160 Speaker 12: Whitfield donated here about fifty times last year until he 592 00:34:33,239 --> 00:34:36,400 Speaker 12: died of AIDS. When I learned of Whitfield's death, Cutter 593 00:34:36,480 --> 00:34:40,520 Speaker 12: Laboratory is recalled sixty four thousand vials which may contain 594 00:34:40,560 --> 00:34:41,520 Speaker 12: Whitfield's blood. 595 00:34:41,840 --> 00:34:44,440 Speaker 3: If further of these kinds of incidents occurred, there is 596 00:34:44,520 --> 00:34:47,560 Speaker 3: some risk that this product, which is necessary for the 597 00:34:47,880 --> 00:34:51,000 Speaker 3: good health of the hemophiliacs, might become unavailable. 598 00:34:51,400 --> 00:34:54,520 Speaker 1: In spite of these recalls, the factor companies still did 599 00:34:54,600 --> 00:34:59,960 Speaker 1: not change their practices. Meanwhile, the National Hemophilia Foundation continued 600 00:35:00,080 --> 00:35:03,760 Speaker 1: to encourage the use of clotting factor. One top medical 601 00:35:03,800 --> 00:35:07,080 Speaker 1: advisor to the NaHF said that his position was business 602 00:35:07,080 --> 00:35:10,400 Speaker 1: as usual. There is no evidence, he said, that treatment 603 00:35:10,520 --> 00:35:12,840 Speaker 1: per se is the cause of AIDS. 604 00:35:12,960 --> 00:35:15,880 Speaker 2: In New York. The National Hemophilia Foundation is worried that 605 00:35:16,000 --> 00:35:18,000 Speaker 2: patients may forego their normal treatment. 606 00:35:18,200 --> 00:35:22,319 Speaker 17: It is extremely important that hemophiliacs continue to use the 607 00:35:22,480 --> 00:35:26,520 Speaker 17: much needed blood clotting factor products because the risk of 608 00:35:26,680 --> 00:35:30,160 Speaker 17: not using it is greater than the risk of AIDS itself. 609 00:35:30,920 --> 00:35:33,960 Speaker 1: Donna Shaw, the author of Blood on Their Hands, says 610 00:35:34,000 --> 00:35:36,919 Speaker 1: it was no coincidence that the NaHF received a lot 611 00:35:36,920 --> 00:35:39,080 Speaker 1: of its funding from the factor companies. 612 00:35:39,680 --> 00:35:43,320 Speaker 10: A lot of patient advocacy groups are in that position 613 00:35:43,680 --> 00:35:47,479 Speaker 10: where they're accepting money from the pharmaceutical industry in order 614 00:35:47,560 --> 00:35:51,520 Speaker 10: to advocate for their patients, and the NAHEF was in 615 00:35:51,600 --> 00:35:54,239 Speaker 10: bed with pharma a little more than most, I think. 616 00:35:55,120 --> 00:35:57,960 Speaker 1: Shaw says that leaders in the hemophilia community took their 617 00:35:58,000 --> 00:36:01,480 Speaker 1: cues from companies making blood product and because of that, 618 00:36:01,960 --> 00:36:04,600 Speaker 1: they saw the situation through rose colored glasses. 619 00:36:05,000 --> 00:36:07,399 Speaker 10: They gave them the old one in a million speech. Right, Oh, 620 00:36:07,480 --> 00:36:10,440 Speaker 10: only gay men are getting aids. One in a million hemophiliacs. 621 00:36:10,480 --> 00:36:14,279 Speaker 10: Don't worry. Don't worry. They diluted themselves into believing this. 622 00:36:14,760 --> 00:36:16,960 Speaker 10: They wanted to do the right thing, but you know, 623 00:36:17,080 --> 00:36:22,360 Speaker 10: they bought the literally the company line. 624 00:36:27,120 --> 00:36:29,960 Speaker 1: Val Bias, who eventually became the head of the National 625 00:36:30,040 --> 00:36:34,840 Speaker 1: Hemophilia Foundation, says it wasn't necessarily that simple. While the 626 00:36:34,960 --> 00:36:39,120 Speaker 1: NHF certainly had some agenda setting power, Bias says that 627 00:36:39,160 --> 00:36:41,440 Speaker 1: it was the local chapters of the organization that were 628 00:36:41,480 --> 00:36:44,320 Speaker 1: the main points of contact for patients and their families. 629 00:36:45,080 --> 00:36:50,560 Speaker 6: Individual chapters control the information that's given out to their patients, 630 00:36:50,920 --> 00:36:53,960 Speaker 6: and I know in the Bay Area, the mom who 631 00:36:54,080 --> 00:36:57,239 Speaker 6: ran the chapter was just like, I wasn't going to 632 00:36:57,280 --> 00:37:01,560 Speaker 6: send out a letter saying to stop treating because I 633 00:37:01,640 --> 00:37:06,040 Speaker 6: knew what treatment was like before we didn't have clotting factor. 634 00:37:06,800 --> 00:37:11,920 Speaker 6: And maybe that was selfish, inappropriate, uneducated, whatever you want 635 00:37:11,920 --> 00:37:17,120 Speaker 6: to call it, but you know that is an emotionally 636 00:37:17,680 --> 00:37:21,000 Speaker 6: affected decision because you're living with the disease. 637 00:37:28,600 --> 00:37:32,920 Speaker 9: This is NBC Nightly News, reported by Tom Brokaw. 638 00:37:33,280 --> 00:37:33,840 Speaker 18: Good Evening. 639 00:37:34,440 --> 00:37:37,640 Speaker 15: Researchers now believe that they have made a monumental breakthrough 640 00:37:37,640 --> 00:37:38,920 Speaker 15: in the fight against age. 641 00:37:39,600 --> 00:37:43,759 Speaker 1: On April twenty third, nineteen eighty four, explosive news came 642 00:37:43,760 --> 00:37:46,960 Speaker 1: out of Washington that finally broke the stalemate between the 643 00:37:46,960 --> 00:37:48,520 Speaker 1: blood industry and its critics. 644 00:37:48,560 --> 00:37:52,080 Speaker 15: At the CDC, US Government of Scientist announced in Washington 645 00:37:52,120 --> 00:37:56,120 Speaker 15: today they have isolated a virus they believe causes age. 646 00:37:56,760 --> 00:38:00,120 Speaker 1: The virus would come to be known as HIV. The 647 00:38:00,160 --> 00:38:02,839 Speaker 1: fact that scientists had identified it was hailed as a 648 00:38:02,880 --> 00:38:04,279 Speaker 1: major step forward. 649 00:38:04,200 --> 00:38:06,480 Speaker 15: And the French have made a similar breakthrough in our 650 00:38:06,560 --> 00:38:10,239 Speaker 15: age research. But this breakthrough makes it possible to identify 651 00:38:10,320 --> 00:38:11,920 Speaker 15: AIDS victims and carriers. 652 00:38:12,400 --> 00:38:15,520 Speaker 1: Here finally was the definitive evidence. The blood industry had 653 00:38:15,560 --> 00:38:20,879 Speaker 1: been demanding the infectious agent visible under a microscope, and 654 00:38:21,000 --> 00:38:23,520 Speaker 1: to be clear, this was not just a big deal 655 00:38:23,600 --> 00:38:26,960 Speaker 1: in the context of the blood supply debate. The identification 656 00:38:27,080 --> 00:38:30,560 Speaker 1: of HIV confirmed once and for all that AIDS was 657 00:38:30,600 --> 00:38:34,280 Speaker 1: spread through blood and other bodily fluids. It was also 658 00:38:34,360 --> 00:38:38,040 Speaker 1: an important step towards developing a blood test, one that 659 00:38:38,040 --> 00:38:41,080 Speaker 1: would allow doctors to detect signs of the disease much 660 00:38:41,120 --> 00:38:44,680 Speaker 1: earlier in people who had not yet developed aid symptoms. 661 00:38:45,320 --> 00:38:46,040 Speaker 12: This means a. 662 00:38:45,960 --> 00:38:48,200 Speaker 19: Blood test can be developed within a few months to 663 00:38:48,239 --> 00:38:52,880 Speaker 19: detect AIDS. First, this could identify victims earlier, and secondly, 664 00:38:52,920 --> 00:38:55,440 Speaker 19: this could prevent the spread of AIDS by testing blood 665 00:38:55,440 --> 00:38:56,920 Speaker 19: and blood banks or donors. 666 00:38:57,360 --> 00:38:59,960 Speaker 1: So it ended up taking another year before the AIDE 667 00:39:00,160 --> 00:39:03,919 Speaker 1: test became available, but by the summer of nineteen eighty five, 668 00:39:04,600 --> 00:39:07,520 Speaker 1: all blood banks and commercial plasma centers were using the 669 00:39:07,560 --> 00:39:14,000 Speaker 1: test to screen donations. Somehow, that wasn't the end of 670 00:39:14,040 --> 00:39:18,759 Speaker 1: the crisis. Astonishingly, when the FDA required the AIDS test 671 00:39:18,840 --> 00:39:21,920 Speaker 1: for all new blood and plasma donations, it did not 672 00:39:22,080 --> 00:39:25,400 Speaker 1: require all existing units of blood and plasma products in 673 00:39:25,480 --> 00:39:29,279 Speaker 1: storage to be tested. Here again is Douglas Star. 674 00:39:29,920 --> 00:39:33,440 Speaker 8: There were still tons of vials of factory in the 675 00:39:33,480 --> 00:39:37,280 Speaker 8: pipeline and in the refrigerators of people with hemophilia ready 676 00:39:37,320 --> 00:39:40,240 Speaker 8: to be used. There were millions of units of blood, 677 00:39:40,400 --> 00:39:43,960 Speaker 8: plasma and clotting factory collected in the old way that 678 00:39:44,160 --> 00:39:46,440 Speaker 8: was waiting to be used all over the country. So 679 00:39:46,719 --> 00:39:48,799 Speaker 8: I compare it to trying to make a U turn 680 00:39:48,840 --> 00:39:49,719 Speaker 8: with a titanic. 681 00:39:51,520 --> 00:39:55,479 Speaker 1: At least one American company continued selling those untested blood 682 00:39:55,520 --> 00:40:01,279 Speaker 1: products to other countries, resulting in new infections around the world. Meanwhile, 683 00:40:01,360 --> 00:40:06,160 Speaker 1: the FDA instituted a new policy. Despite the availability of 684 00:40:06,200 --> 00:40:09,680 Speaker 1: the new HIV test, there would now be a donation 685 00:40:09,840 --> 00:40:13,160 Speaker 1: ban on recent immigrants from Haiti, as well as men 686 00:40:13,200 --> 00:40:14,319 Speaker 1: who had sex with men. 687 00:40:14,560 --> 00:40:17,239 Speaker 5: The Food and Drug Administration has recommended that any man 688 00:40:17,280 --> 00:40:20,080 Speaker 5: who has had sex with another man since nineteen seventy 689 00:40:20,120 --> 00:40:21,920 Speaker 5: seven not donate blood. 690 00:40:22,400 --> 00:40:27,000 Speaker 1: That ban remained unchanged until twenty fifteen, and it still 691 00:40:27,040 --> 00:40:31,319 Speaker 1: exists in a modified form today. We now know that 692 00:40:31,440 --> 00:40:35,520 Speaker 1: thirty five thousand Americans were infected with HIV through blood 693 00:40:35,560 --> 00:40:39,680 Speaker 1: and blood products. Among them were nearly ten thousand people 694 00:40:39,719 --> 00:40:43,840 Speaker 1: with hemophilia, more than half of their entire population. In 695 00:40:43,880 --> 00:40:48,160 Speaker 1: the United States. Within the community, it is sometimes referred 696 00:40:48,200 --> 00:40:51,640 Speaker 1: to as the hemophilia Holocaust. 697 00:40:56,320 --> 00:40:58,520 Speaker 6: I'd always suspected there were enough people dying in the 698 00:40:58,520 --> 00:41:01,080 Speaker 6: community in New York number was going to come up 699 00:41:01,080 --> 00:41:01,840 Speaker 6: at some point. 700 00:41:02,480 --> 00:41:05,399 Speaker 1: Val Bias ended up moving to San Francisco and working 701 00:41:05,480 --> 00:41:09,360 Speaker 1: at a camp for kids with hemophilia. Throughout the eighties, 702 00:41:09,560 --> 00:41:13,280 Speaker 1: his campers and counselors were dying of AIDS, and Bias 703 00:41:13,360 --> 00:41:16,080 Speaker 1: became involved with a support group for friends and family. 704 00:41:16,760 --> 00:41:20,480 Speaker 6: You know, it became a real solemn, emotional thing to 705 00:41:20,520 --> 00:41:26,239 Speaker 6: attend those meetings, because as those support groups grew, it 706 00:41:26,440 --> 00:41:30,279 Speaker 6: was first one person, and then three people, and then 707 00:41:30,440 --> 00:41:34,200 Speaker 6: five people, and then ten people. And the kids were 708 00:41:34,200 --> 00:41:37,960 Speaker 6: getting sick too, seven eight nine year old kids who 709 00:41:37,960 --> 00:41:40,719 Speaker 6: were coming down with HIV and they were not surviving. 710 00:41:41,440 --> 00:41:44,399 Speaker 1: During this same period, there were thousands of gay men 711 00:41:44,440 --> 00:41:48,480 Speaker 1: in San Francisco who were also dying of AIDS. As 712 00:41:48,520 --> 00:41:52,040 Speaker 1: the crisis tore through both communities, they came together. 713 00:41:52,800 --> 00:41:56,080 Speaker 6: And as we began to look for answers. That's when 714 00:41:56,080 --> 00:41:58,719 Speaker 6: we became seriously involved with the gay community. They were 715 00:41:58,760 --> 00:42:01,960 Speaker 6: the only ones that had literature and information about what 716 00:42:02,040 --> 00:42:03,399 Speaker 6: this was, how it. 717 00:42:04,000 --> 00:42:10,560 Speaker 1: Progressed Bias went on to be a leading spokesman for 718 00:42:10,600 --> 00:42:14,120 Speaker 1: the hemophilia community, and in two thousand and eight he 719 00:42:14,200 --> 00:42:18,120 Speaker 1: became the first black CEO of the National Hemophilia Foundation. 720 00:42:19,040 --> 00:42:22,560 Speaker 1: In that post, Bias worked to reform an organization that 721 00:42:22,680 --> 00:42:26,680 Speaker 1: some twenty five years earlier had repeatedly encouraged its members 722 00:42:26,719 --> 00:42:30,799 Speaker 1: to take a deadly product. Bias approached the task with 723 00:42:30,840 --> 00:42:33,960 Speaker 1: the understanding of a person who himself suffered from hemophilia 724 00:42:34,440 --> 00:42:36,040 Speaker 1: and who understood the trade offs. 725 00:42:36,040 --> 00:42:42,520 Speaker 6: Intuitively, although the Foundation could have made different decisions, they 726 00:42:42,560 --> 00:42:45,399 Speaker 6: were not the same kind of experts that you had 727 00:42:45,440 --> 00:42:49,359 Speaker 6: on when the CDC and the FDA. They were individuals 728 00:42:49,360 --> 00:42:52,920 Speaker 6: with hemophilia, and they were parents of children with humophilia, 729 00:42:53,560 --> 00:43:00,120 Speaker 6: and they did not, in my opinion, gain anything from 730 00:43:00,560 --> 00:43:04,000 Speaker 6: the decisions that they made. In fact, most of them 731 00:43:04,120 --> 00:43:09,080 Speaker 6: either died themselves or their children died. And you know, 732 00:43:10,520 --> 00:43:14,040 Speaker 6: I always feel for those who would paint them as 733 00:43:14,120 --> 00:43:17,080 Speaker 6: villains when they were also the victims. 734 00:43:17,960 --> 00:43:20,720 Speaker 1: It was back in nineteen eighty eight that Bias found 735 00:43:20,719 --> 00:43:24,320 Speaker 1: out that he had at some point contracted HIV from factor. 736 00:43:25,440 --> 00:43:28,920 Speaker 1: He had also unwittingly passed it along to his wife Katie. 737 00:43:29,560 --> 00:43:31,839 Speaker 6: Within a few months, she had a first bout with 738 00:43:31,880 --> 00:43:36,000 Speaker 6: pneumaicistis pneumonia. A few months later, she had another one 739 00:43:36,360 --> 00:43:40,879 Speaker 6: now and her health continued to deteriorate over the next 740 00:43:40,960 --> 00:43:43,680 Speaker 6: few years, and it was hard to watch her lose 741 00:43:43,920 --> 00:43:47,760 Speaker 6: the ability to do things. You know, she was a 742 00:43:47,800 --> 00:43:51,719 Speaker 6: great lover of movies, you know, Oscar night was our 743 00:43:51,760 --> 00:43:55,839 Speaker 6: favorite night of the year, and avid reader of books, 744 00:43:55,920 --> 00:43:59,640 Speaker 6: and it got to the point where she'd get to 745 00:44:00,080 --> 00:44:03,960 Speaker 6: the book and she couldn't remember the beginning. She lost 746 00:44:04,000 --> 00:44:06,640 Speaker 6: interest in being able to sit through a whole movie. 747 00:44:07,440 --> 00:44:11,120 Speaker 6: And you know, I just I cared for her, you know, 748 00:44:11,280 --> 00:44:14,600 Speaker 6: I did everything I could to make her comfortable and 749 00:44:14,880 --> 00:44:17,960 Speaker 6: treat her. And he you know, so she felt a 750 00:44:18,040 --> 00:44:19,160 Speaker 6: part of things. 751 00:44:20,640 --> 00:44:24,240 Speaker 1: When he was a kid, bias his family, doctors, nurses, 752 00:44:24,280 --> 00:44:26,960 Speaker 1: and friends made his time in the hospital more bearable. 753 00:44:27,960 --> 00:44:30,799 Speaker 1: Years later, he tried to do the same for his wife. 754 00:44:31,280 --> 00:44:33,920 Speaker 6: And when she went into the hospital for that last time, 755 00:44:34,320 --> 00:44:37,160 Speaker 6: she lost her ability to speak while she was in 756 00:44:37,160 --> 00:44:41,440 Speaker 6: the hospital, so she could only sort of smile, and 757 00:44:43,600 --> 00:44:47,160 Speaker 6: you know, you could see the recognition in her eyes 758 00:44:47,200 --> 00:44:49,000 Speaker 6: when all of the friends came together and we sat 759 00:44:49,000 --> 00:44:52,279 Speaker 6: in that room and we just told stories about the 760 00:44:52,320 --> 00:44:57,040 Speaker 6: good times we had had his friends, and the doctor 761 00:44:57,320 --> 00:45:01,759 Speaker 6: called me out of the room one afternoon. You got 762 00:45:01,760 --> 00:45:04,640 Speaker 6: to make these people go home. Your wife is ready 763 00:45:04,640 --> 00:45:07,239 Speaker 6: to go, and she can't go because you're all here 764 00:45:07,360 --> 00:45:13,279 Speaker 6: every day. So I sent everybody home, and you know, 765 00:45:13,400 --> 00:45:16,879 Speaker 6: within a few hours, I got into bed with her 766 00:45:17,719 --> 00:45:24,879 Speaker 6: and she passed quietly, you know, peacefully. And it's all 767 00:45:25,000 --> 00:45:25,480 Speaker 6: very sad. 768 00:45:25,760 --> 00:45:53,080 Speaker 18: So I can't explain this, something deep and sadly. 769 00:45:55,200 --> 00:45:58,040 Speaker 1: In our next episode, a movie star helps awaken the 770 00:45:58,080 --> 00:46:01,640 Speaker 1: country to the AIDS crisis and convinces the president to 771 00:46:01,640 --> 00:46:02,240 Speaker 1: pay attention. 772 00:46:02,520 --> 00:46:04,839 Speaker 5: President Reagan said today that Rock Hudson would always be 773 00:46:04,880 --> 00:46:08,480 Speaker 5: remembered for his humanity, and on hearing of his death, 774 00:46:08,520 --> 00:46:11,480 Speaker 5: the House of Representatives agreed to double the amount of 775 00:46:11,640 --> 00:46:14,080 Speaker 5: AIDS funds for research next year. 776 00:46:15,560 --> 00:46:20,160 Speaker 1: Fiasco is presented by Audible Originals and Prologue Projects. This 777 00:46:20,239 --> 00:46:23,600 Speaker 1: episode is dedicated to the memory of bow Bias, who 778 00:46:23,600 --> 00:46:26,760 Speaker 1: died in December of twenty twenty one, about six months 779 00:46:26,800 --> 00:46:31,160 Speaker 1: after we interviewed him. Fiasco is produced by Andrew Parsons, 780 00:46:31,280 --> 00:46:35,760 Speaker 1: Sam Grahm Felsen, Madeline kaplan Ula Kalpa, and me Leon Napock. 781 00:46:36,560 --> 00:46:40,920 Speaker 1: Our researcher is Francis Carr. Editorial support from Jessica Miller 782 00:46:41,040 --> 00:46:45,919 Speaker 1: and Miller waswas archival research by Michelle Sullivan. The vice 783 00:46:45,920 --> 00:46:49,400 Speaker 1: president of Audible Studios is Mike Charzick. The editor in 784 00:46:49,440 --> 00:46:53,360 Speaker 1: chief for Audible Originals is David Blum. This season's music 785 00:46:53,440 --> 00:46:57,240 Speaker 1: is composed by Edith Mudge. Additional music by Nick Sylvester 786 00:46:57,360 --> 00:47:01,040 Speaker 1: of God Mode, Joel Saint, Julian and Dan English, Noah 787 00:47:01,120 --> 00:47:05,160 Speaker 1: Hect and Joe Valley. Our theme song is by Spatial Relations. 788 00:47:06,120 --> 00:47:08,520 Speaker 1: Our credits song this week is Blood in My Veins 789 00:47:08,560 --> 00:47:12,239 Speaker 1: by Elka Robatai. Thanks to the Vanderbilt Television Archive and 790 00:47:12,360 --> 00:47:18,000 Speaker 1: ABC News source music licensing courtesy of Anthony Roman. Audio 791 00:47:18,040 --> 00:47:21,640 Speaker 1: mixed by Erica Wong with additional support from Selina Urabe. 792 00:47:22,280 --> 00:47:26,160 Speaker 1: Our artwork is designed by Teddy Blanks at Chips and y. 793 00:47:26,400 --> 00:47:29,000 Speaker 1: Thanks to Peter Yazzi, and thanks to you for listening. 794 00:47:29,400 --> 00:47:30,160 Speaker 1: See you next week.