WEBVTT - Episode 4: Blood 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 --> 0:00:59.480 that's audible dot com slash backfired. Fiasco is intended for 0:00:59.600 --> 0:01:03.480 mature audiences. For a list of books, articles and documentaries 0:01:03.520 --> 0:01:05.920 we used in our research. Follow the link in the 0:01:05.920 --> 0:01:12.240 show notes. Previously on fiasco. 0:01:13.800 --> 0:01:18.080 It's mysterious, it's deadly, and it's baffling medical science. 0:01:18.240 --> 0:01:21.399 Federal health officials consider it an epidemic, yet you rarely 0:01:21.400 --> 0:01:22.240 hear a thing about it. 0:01:22.440 --> 0:01:25.520 We had no other resources but ourselves. I thought, well, 0:01:25.560 --> 0:01:26.600 my goodness, we're all dead. 0:01:26.760 --> 0:01:29.440 It's a disease first detected in the gay community that 0:01:29.480 --> 0:01:30.880 has now spread beyond that. 0:01:35.240 --> 0:01:37.480 When most of us get a cut, we start bleeding. 0:01:38.480 --> 0:01:41.440 Then a minute or two later, our blood clots and 0:01:41.480 --> 0:01:45.720 the bleeding stops. Val Bias knew from an early age 0:01:45.760 --> 0:01:49.240 that his blood didn't work like that. Growing up in Buffalo, 0:01:49.280 --> 0:01:52.000 New York, Bias was always told he had to be 0:01:52.040 --> 0:01:54.080 careful in ways that other kids didn't. 0:01:54.760 --> 0:01:59.240 I think the general position was, you can't do this, 0:01:59.400 --> 0:02:02.760 you can't do that. No wrestling with your cousins, that 0:02:02.840 --> 0:02:05.520 kind of thing. So I had an extended family. There 0:02:05.520 --> 0:02:08.720 were about fifty of us in Buffalo, and of course 0:02:08.760 --> 0:02:12.760 they all understood hemophilia because we had had family members 0:02:12.760 --> 0:02:15.560 who had had it in the past and had passed 0:02:15.560 --> 0:02:16.200 away from it. 0:02:18.400 --> 0:02:21.560 Chemophilia is a rare bleeding disorder. That can turn an 0:02:21.639 --> 0:02:26.320 everyday injury into a life threatening crisis. It affects mostly 0:02:26.440 --> 0:02:29.720 men and boys. Those who have it are typically born 0:02:29.800 --> 0:02:32.480 with a gene mutation that affects the body's ability to 0:02:32.520 --> 0:02:37.359 produce certain proteins. These proteins are what make normal clotting possible, 0:02:37.840 --> 0:02:40.480 and without them, even something as minor as a bumped 0:02:40.560 --> 0:02:42.560 knee can cause internal bleeding. 0:02:43.240 --> 0:02:46.320 Some bleeding episodes can feel like you broke the bone, 0:02:47.040 --> 0:02:51.040 but it's really just the bleeding filling the joint or 0:02:51.600 --> 0:02:55.120 the bruise in a way that can be extremely painful. 0:02:56.000 --> 0:02:58.600 When Bias was a kid, the way to treat these 0:02:58.680 --> 0:03:02.600 kinds of injuries was to transfusions of ice cold plasma, 0:03:03.440 --> 0:03:06.800 a tea colored component of blood that helps distribute proteins 0:03:06.800 --> 0:03:08.280 and nutrients throughout the body. 0:03:08.960 --> 0:03:12.600 I would sit there for six eight hours with a 0:03:12.639 --> 0:03:15.880 blanket on me and my teeth chattering, waiting for the 0:03:15.919 --> 0:03:19.440 treatment to be over. It really was like an icy 0:03:19.600 --> 0:03:23.000 being dripped into your veins. 0:03:27.360 --> 0:03:30.080 To get his mind off the pain, Bias would watch 0:03:30.120 --> 0:03:33.640 I Love Lucy and read and reread books about monsters, 0:03:34.240 --> 0:03:37.520 memorizing minute details about Dracua and the creature from the 0:03:37.560 --> 0:03:41.360 Black Lagoon. His grandmother would give him tangled balls of 0:03:41.440 --> 0:03:46.000 thread that he would carefully untie like homemade puzzles. Bias 0:03:46.120 --> 0:03:48.280 was in and out of the hospital for treatments all 0:03:48.320 --> 0:03:48.720 the time. 0:03:49.440 --> 0:03:54.080 I knew that hospital better than many homes I lived in. 0:03:54.280 --> 0:03:58.800 I mean, top to bottom. Even my accent Buffalonians have 0:03:58.840 --> 0:04:02.400 a particular accent was altered because I spent so much 0:04:02.440 --> 0:04:05.600 time in the hospital with professionals who aren't necessarily from 0:04:05.640 --> 0:04:06.120 the area. 0:04:07.360 --> 0:04:10.280 Bias tried to make the best of his situation, but 0:04:10.320 --> 0:04:13.520 the more he learned about hemophilia, the more he realized 0:04:13.560 --> 0:04:15.960 how different his outlook was from that of his peers. 0:04:17.040 --> 0:04:19.520 In sixth grade, he got a new science textbook at 0:04:19.560 --> 0:04:22.720 school and he looked up hemophilia in the index. 0:04:23.040 --> 0:04:28.200 And there was a paragraph on hemophilia, and I was like, wow, 0:04:28.520 --> 0:04:31.040 people actually know what it is. And I read that 0:04:31.080 --> 0:04:33.760 paragraph and it said my life expectancy would be twenty 0:04:33.839 --> 0:04:36.720 years old. And I was devastated. 0:04:37.240 --> 0:04:42.279 For long stretches of his young life, this was Valbias's reality, 0:04:42.400 --> 0:04:47.320 visiting the hospital, managing pain, expecting to die young. Then 0:04:47.640 --> 0:04:50.720 in the late sixties, a new treatment was developed that 0:04:50.760 --> 0:04:53.360 revolutionized life for people with hemophilia. 0:04:55.160 --> 0:04:58.400 You're looking at something that will let a hemophiliac live 0:04:58.600 --> 0:05:00.000 and bleed like a normal person. 0:05:01.200 --> 0:05:04.680 The new treatment was known as clotting factor, or just 0:05:04.800 --> 0:05:08.599 Factor for short. It was a powdered concentrate that came 0:05:08.680 --> 0:05:12.280 in a small vial, and, like the icy transfusions val 0:05:12.360 --> 0:05:15.680 Bias had been receiving for years, Factor was made out 0:05:15.720 --> 0:05:19.320 of plasma. The difference was that Factor could be stored 0:05:19.360 --> 0:05:22.840 in an ordinary refrigerator and was easy to self administer. 0:05:23.839 --> 0:05:26.840 That meant people with chemophilia no longer had to rush 0:05:26.839 --> 0:05:29.520 to the hospital every time they had a bleeding episode. 0:05:29.800 --> 0:05:31.159 It is called Factor eight. 0:05:31.400 --> 0:05:32.840 You probably have never heard of it. 0:05:32.920 --> 0:05:36.520 Frequent costly injections of a product made from the plasma 0:05:36.560 --> 0:05:39.200 of blood donors keeps them from bleeding to death. 0:05:39.800 --> 0:05:43.240 Factor was one hundred times more effective at clotting blood 0:05:43.279 --> 0:05:47.040 than raw plasma very quickly. It caused the life expectancy 0:05:47.040 --> 0:05:51.240 of people with chemophilia to shoot up dramatically. To val Bias, 0:05:51.279 --> 0:05:54.240 it was like a miracle. Among other things, it meant 0:05:54.240 --> 0:05:56.320 that he could now go off to college on his own. 0:05:56.920 --> 0:06:01.400 It was a reality that I could actually do. He 0:06:01.560 --> 0:06:04.839 even thought. After I talked to other men with heemophilia, 0:06:05.240 --> 0:06:07.120 many of them didn't feel like they could have a 0:06:07.120 --> 0:06:10.880 family or normal life, and I think that clotting factor 0:06:11.040 --> 0:06:14.960 changed that reality for all of us. It made us 0:06:14.960 --> 0:06:18.719 seek professional careers we didn't think we could have. It 0:06:18.839 --> 0:06:22.360 made us reach for the stars because we no longer 0:06:22.400 --> 0:06:23.800 were tethered to the hospital. 0:06:27.279 --> 0:06:30.520 But factor came with a caveat. A single batch of 0:06:30.520 --> 0:06:33.839 it contained the combined plasma of as many as twenty 0:06:33.960 --> 0:06:37.360 thousand different people, way more than a dozen or so 0:06:37.440 --> 0:06:40.840 it took to make the old treatment. If just one 0:06:40.880 --> 0:06:44.200 of those twenty thousand donors was carrying a blood borne disease, 0:06:44.960 --> 0:06:49.720 the person receiving the treatment could become infected. This kind 0:06:49.760 --> 0:06:53.080 of contamination had long been a risk for people with hemophilia. 0:06:53.760 --> 0:06:56.800 Thal Bias had gotten hepatitis B from a blood transfusion 0:06:56.800 --> 0:06:59.960 when he was in sixth grade. But with clotting factors, 0:07:00.360 --> 0:07:03.400 the risk of contracting a blood borne disease was much 0:07:03.680 --> 0:07:10.400 much higher. For Bias and thousands of others like him, 0:07:10.640 --> 0:07:14.480 Factor was a life changing treatment. It seemed like a 0:07:14.560 --> 0:07:21.080 risk worth taking. I'm leon Neefok from Audible Originals and 0:07:21.160 --> 0:07:26.640 prologue projects. This is fiasco. 0:07:26.880 --> 0:07:29.720 Blood banks and plasma centers may be spreading a new 0:07:29.720 --> 0:07:32.040 and mysterious ailment called AIDS. 0:07:32.080 --> 0:07:34.600 Cases go from two to four to eight. 0:07:34.920 --> 0:07:37.800 We don't really have any proof that nation's blood supply 0:07:37.960 --> 0:07:38.720 is contaminated. 0:07:38.800 --> 0:07:42.240 If there's even one infected unit, it's going to infect 0:07:42.280 --> 0:07:42.920 the whole thing. 0:07:43.280 --> 0:07:45.440 There were enough people dying in the community that in 0:07:45.680 --> 0:07:48.040 your number was going to come up at some point. 0:07:49.680 --> 0:07:53.520 In this episode. AIDS puts America's blood supply in jeopardy, 0:07:54.240 --> 0:07:56.840 but the absence of a consensus around what causes the 0:07:56.840 --> 0:08:10.920 disease makes it impossible to contain the spread. The term 0:08:11.040 --> 0:08:13.679 canary in the coal mine comes from an old method 0:08:13.720 --> 0:08:18.320 of detecting poisonous gases. Miners used to bring caged canaries 0:08:18.320 --> 0:08:22.119 with them into mines, and because gases kill canaries faster 0:08:22.200 --> 0:08:25.320 than they kill humans, the miners knew to get out 0:08:25.360 --> 0:08:30.640 immediately if one of the canaries keeled over. People with 0:08:30.720 --> 0:08:33.840 chemophilia are often referred to as the canaries in the 0:08:33.840 --> 0:08:35.839 coal mine of bloodborne diseases. 0:08:36.440 --> 0:08:39.520 If anybody are going to get a blood born disease first, 0:08:39.520 --> 0:08:42.679 it's going to be patients with hemophilia, because they get 0:08:42.720 --> 0:08:43.160 them all. 0:08:44.080 --> 0:08:47.680 This is doctor Bruce Evatt in nineteen eighty one. He 0:08:47.840 --> 0:08:50.400 was working at the Centers for Disease Control, where he 0:08:50.480 --> 0:08:53.960 served as a point man on the hemophilia community. Evatt 0:08:54.040 --> 0:08:57.360 had joined the CDC in the mid seventies, a strange 0:08:57.400 --> 0:09:00.640 period when the agencies seemed to be losing its relevant. 0:09:00.840 --> 0:09:04.320 The infectious disease community at that point felt that for 0:09:04.400 --> 0:09:08.880 the most part, infectious diseases were conquered. The arrogance was 0:09:09.080 --> 0:09:12.240 that there were no more infectious diseases. We really didn't 0:09:12.280 --> 0:09:13.880 need a CDC anymore. 0:09:14.400 --> 0:09:17.640 But then a new disease appeared on the CDC's radar. 0:09:18.640 --> 0:09:21.960 As you've heard, the disease was initially observed in gay men. 0:09:22.840 --> 0:09:26.280 Then it started showing up in other populations like injecting 0:09:26.320 --> 0:09:29.920 drug users and people from Haiti. For a long time, 0:09:30.320 --> 0:09:32.960 no one could figure out what was making all these 0:09:32.960 --> 0:09:33.600 people sick. 0:09:34.000 --> 0:09:37.520 Investigators have examined the habits of homosexuals for clues. The 0:09:37.559 --> 0:09:40.400 best guess is that some infectious agent is causing it. 0:09:41.160 --> 0:09:43.839 Some scientists feared from the start that the culprit was 0:09:43.880 --> 0:09:46.960 a blood borne virus, but that was just a theory. 0:09:47.360 --> 0:09:52.040 There was no general agreement in the scientific community as 0:09:52.160 --> 0:09:55.640 what this disease was, whether it was even infectious. Okay, 0:09:56.160 --> 0:10:00.400 and there were all kinds of postulations being put on, 0:10:01.360 --> 0:10:04.160 and everybody wanted to win the Nobel Prize by getting 0:10:04.160 --> 0:10:05.400 the correct one out there. 0:10:05.600 --> 0:10:08.240 Researchers are now studying blood and other samples from the 0:10:08.280 --> 0:10:11.400 victims trying to learn what is causing the disease. So 0:10:11.480 --> 0:10:12.760 far they have had no luck. 0:10:13.720 --> 0:10:16.400 This was more or less the situation in January of 0:10:16.480 --> 0:10:20.199 nineteen eighty two when Evitt received an alarming phone call 0:10:20.280 --> 0:10:26.240 from Miami, Florida. The person calling was a doctor who 0:10:26.240 --> 0:10:29.839 had lost a patient to numasistus pneumonia. Unlike so many 0:10:29.920 --> 0:10:32.760 others who had recently died of the same thing, this 0:10:32.840 --> 0:10:36.440 patient was a straight, married man. The reason the doctor 0:10:36.440 --> 0:10:38.960 in Miami thought to call Bruce Evitt was that the 0:10:38.960 --> 0:10:41.720 patient also had hemophilia. 0:10:41.320 --> 0:10:43.680 And he says, I've got a patient I think that 0:10:43.920 --> 0:10:49.480 died from contaminated factor. The patient had all these symptoms, 0:10:50.360 --> 0:10:54.600 and he was not a homosexual, and he died before 0:10:54.600 --> 0:10:56.079 we could make a diagnosis. 0:10:56.880 --> 0:11:00.160 The doctor suspected the source of the infection was clotting factor. 0:11:00.960 --> 0:11:04.319 That put Evit on high alert if more cases of 0:11:04.320 --> 0:11:07.559 pneumacistus were to start showing up in patients with hemophilia. 0:11:08.120 --> 0:11:12.120 The ramifications would be grave for starters, it would bolster 0:11:12.200 --> 0:11:14.800 the theory that the new disease was a blood born virus, 0:11:15.720 --> 0:11:18.480 and it could mean that the country's entire blood supply 0:11:18.679 --> 0:11:23.679 was compromised. Before long, Evatt heard about several more suspected 0:11:23.720 --> 0:11:24.559 cases and. 0:11:24.600 --> 0:11:28.679 Suddenly, bang bang bang, three of them within a short 0:11:28.720 --> 0:11:31.600 period of time. That you could excuse one case of 0:11:31.720 --> 0:11:36.319 hemophilia with this syndrome, but three, and if you got more, 0:11:37.000 --> 0:11:40.040 you know, the odds were going through the roof in 0:11:40.160 --> 0:11:41.400 terms of probability. 0:11:42.760 --> 0:11:45.760 Ev It became convinced that the new disease had to 0:11:45.800 --> 0:11:49.360 be bloodborne. That meant he needed to warn the blood 0:11:49.360 --> 0:11:59.240 industry right away. The blood industry is made up of 0:11:59.320 --> 0:12:03.439 two basic silos. On the one hand, there are nonprofits 0:12:03.520 --> 0:12:07.319 like the Red Cross, which rely on donations. Then there 0:12:07.320 --> 0:12:09.840 are plasma companies that pay people for their blood. 0:12:10.240 --> 0:12:12.960 Through its network of donor centers around the country, the 0:12:12.960 --> 0:12:15.839 Red Cross collects over one half of the nation's hull 0:12:15.880 --> 0:12:16.560 blood supply. 0:12:17.200 --> 0:12:20.120 If you donate to the Red Cross or another nonprofit 0:12:20.240 --> 0:12:24.720 blood bank, you're giving what's called whole blood. Whole blood 0:12:24.800 --> 0:12:27.480 is used for people who are undergoing surgery or who 0:12:27.520 --> 0:12:29.160 have lost a lot of their own blood as a 0:12:29.200 --> 0:12:31.040 result of, say, a car accident. 0:12:31.280 --> 0:12:33.920 Hi, this is Bob, Oh, please pretch now to visit 0:12:33.960 --> 0:12:36.000 your local hospital or community blood bank. 0:12:36.679 --> 0:12:39.440 Unlike the blood banks, the for profit companies in the 0:12:39.440 --> 0:12:43.199 blood industry pay people for their blood, or, more accurately, 0:12:43.360 --> 0:12:47.439 they pay for their plasma. Plasma is the vital ingredient 0:12:47.520 --> 0:12:51.160 in clotting factor, which means people with hemophilia require a 0:12:51.280 --> 0:12:55.000 huge amount of it to live healthy lives. Producing a 0:12:55.040 --> 0:12:58.440 single year's worth of factor for one person can require 0:12:58.559 --> 0:13:02.920 more than a thousand indivi vidual plasma donations. There simply 0:13:02.960 --> 0:13:05.839 aren't enough altruistic people in the world to meet that 0:13:05.920 --> 0:13:10.199 level of demand through donations alone. But paying for plasma 0:13:10.360 --> 0:13:13.400 comes with its own unique risks. It's the poor who 0:13:13.440 --> 0:13:16.320 line up before dawn waiting to sell their plasma raw 0:13:16.360 --> 0:13:18.280 material for the blood company's products. 0:13:18.920 --> 0:13:21.520 If you're paying somebody for their blood, you're going to 0:13:21.559 --> 0:13:24.199 attract people who need the money desperately enough to want 0:13:24.240 --> 0:13:25.000 to give their blood. 0:13:25.600 --> 0:13:28.920 Douglas Starr is the author of Blood, An Epic History 0:13:28.960 --> 0:13:30.280 of Medicine and Commerce. 0:13:31.160 --> 0:13:33.520 Where are they going to find people who are willing 0:13:33.559 --> 0:13:34.520 to sell plasma? 0:13:35.040 --> 0:13:35.400 Well? 0:13:35.559 --> 0:13:38.640 Skid Row Los Angeles and on the city's skid row, 0:13:38.920 --> 0:13:40.840 a corner of that world blood market. 0:13:41.040 --> 0:13:44.160 The poor, the alcoholics, and the drug addicts sell their plasma, 0:13:44.280 --> 0:13:47.760 and that population tends to have higher rates of diseases. 0:13:49.720 --> 0:13:53.960 Throughout the nineteen sixties and seventies, plasma companies opened collection 0:13:54.120 --> 0:13:58.400 centers in marginalized communities across the country. They also took 0:13:58.440 --> 0:14:01.280 their operations into a Matamerica's prisons. 0:14:01.240 --> 0:14:03.600 Prisoners are able to earn a little money to buy 0:14:03.640 --> 0:14:05.840 the nicety, truth based and smacks. 0:14:06.000 --> 0:14:07.640 They buy it with their blood. 0:14:08.679 --> 0:14:11.440 Donna Shaw is a journalist who wrote about this practice 0:14:11.480 --> 0:14:13.360 in her book Blood on Their Hands. 0:14:13.880 --> 0:14:18.040 These commercial blood centers were for profit companies that were 0:14:18.040 --> 0:14:21.920 allowed to operate inside of these state prisons. 0:14:22.160 --> 0:14:24.640 They're paid about eight dollars a leter. They get six 0:14:24.680 --> 0:14:26.600 dollars of the money. The rest goes under the ind 0:14:26.640 --> 0:14:27.840 Maade welfare upon. 0:14:28.200 --> 0:14:31.000 The prevalence of blood born diseases tends to be higher 0:14:31.040 --> 0:14:34.360 than average among people in prison. If the new disease 0:14:34.520 --> 0:14:37.800 really was a blood born virus, that meant a lot 0:14:37.840 --> 0:14:40.280 of the plasma being bought and sold by the plasma 0:14:40.280 --> 0:14:42.640 companies was at high risk for contamination. 0:14:43.160 --> 0:14:46.840 They're not combining one or two or a dozen units 0:14:46.840 --> 0:14:51.440 of plasma. They're combining thousands and thousands of them in 0:14:51.480 --> 0:14:55.960 these huge vats, right, and so if there's even one 0:14:56.080 --> 0:15:00.000 infected unit in that big vat, it's going to infect 0:15:00.280 --> 0:15:00.920 the whole thing. 0:15:11.040 --> 0:15:14.200 Bruce Evett at the CDC was deeply concerned about the 0:15:14.240 --> 0:15:18.040 plasma companies, but he was also worried about nonprofit blood 0:15:18.080 --> 0:15:21.400 banks like the Red Cross. In cities like New York 0:15:21.440 --> 0:15:24.400 and San Francisco, gay men were known for being a 0:15:24.440 --> 0:15:29.320 particularly reliable cohort of blood donors. At Erwin Memorial, the 0:15:29.400 --> 0:15:32.880 largest nonprofit blood bank in San Francisco, they made up 0:15:32.960 --> 0:15:36.600 twenty percent of the donor pool. If the new disease 0:15:36.720 --> 0:15:40.480 was being spread through blood and it was disproportionately showing 0:15:40.600 --> 0:15:43.560 up in gay men, it seemed to evit like a 0:15:43.560 --> 0:15:47.680 recipe for disaster. And because the whole blood collected by 0:15:47.720 --> 0:15:50.840 the nonprofits was used in a wide variety of patients, 0:15:51.320 --> 0:15:54.160 it wasn't just people with hemophilia who were at risk. 0:15:55.000 --> 0:15:57.320 Anyone who went to the hospital and needed a blood 0:15:57.320 --> 0:16:06.840 transfusion could be infected to On July twenty seventh, nineteen 0:16:06.880 --> 0:16:10.040 eighty two, Evitt and a few colleagues from the CDC 0:16:10.360 --> 0:16:13.480 traveled to Washington for an emergency meeting convened by the 0:16:13.480 --> 0:16:17.400 Assistant Secretary of Health. It was attended by leaders for 0:16:17.480 --> 0:16:19.880 the blood industry as well as the gay community and 0:16:19.920 --> 0:16:24.720 the hemophilia community. Representatives from the FDA, which had regulatory 0:16:24.760 --> 0:16:28.800 power over the blood industry, were also there. Ewitt gave 0:16:28.840 --> 0:16:31.960 a presentation aimed at convincing people that the new disease 0:16:32.120 --> 0:16:33.880 was being spread through blood. 0:16:34.280 --> 0:16:36.040 There was a lot of skepticism. It was a new 0:16:36.080 --> 0:16:39.720 idea introduced, okay, that this was a new infectious agent, 0:16:40.040 --> 0:16:44.160 that it was different from all other infectious agents, and 0:16:44.320 --> 0:16:47.520 that it was being transmitted by blood. Well, the first 0:16:47.560 --> 0:16:50.400 time anybody hears that, they're going to be skeptical. 0:16:51.120 --> 0:16:54.240 Eviitt urged the blood industry to start screening out any 0:16:54.280 --> 0:16:56.680 donors who came from groups that appeared to be at 0:16:56.720 --> 0:17:01.000 special risk. That included injecting drug users, gay men, and 0:17:01.120 --> 0:17:04.919 Haitian Americans, a community that was notably not represented at 0:17:04.920 --> 0:17:10.159 the hearing. Evatt's proposal received immediate pushback. Here again is 0:17:10.240 --> 0:17:11.560 journalist Douglas Starr. 0:17:12.359 --> 0:17:14.840 Gay donors happened to be very good donors. They were 0:17:14.920 --> 0:17:17.760 very civic minded, as a group, and by excluding them, 0:17:17.800 --> 0:17:20.920 you're casting a pall over their citizenship, and it wasn't right. 0:17:20.960 --> 0:17:23.119 The other groups they wanted us to exclude also was 0:17:23.160 --> 0:17:27.960 IVY drug users, So gay people were feeling, you're lumping 0:17:28.040 --> 0:17:31.760 us with IVY drug users when we're good citizens. It's 0:17:31.760 --> 0:17:32.200 not right. 0:17:33.320 --> 0:17:36.720 To many, the idea of screening out gay and bisexual 0:17:36.760 --> 0:17:39.440 men from the donor pool seemed like it would reinforce 0:17:39.520 --> 0:17:43.160 homophobic assumptions among the general public that all men who 0:17:43.160 --> 0:17:47.680 had sex with men were infected and therefore dangerous. After 0:17:47.720 --> 0:17:51.000 the meeting in Washington, one gay advocacy group issued a 0:17:51.040 --> 0:17:54.520 statement arguing that screening out gay men as blood donors 0:17:54.640 --> 0:17:58.160 would be reminiscent of misagenation blood laws that divided black 0:17:58.200 --> 0:17:59.240 blood from white. 0:18:00.000 --> 0:18:04.320 A community is eager to have reason on the project, 0:18:04.800 --> 0:18:07.680 not the kind of rhetoric and scapegoating that the proposed 0:18:08.080 --> 0:18:10.200 blood policy seems to indicate. 0:18:20.200 --> 0:18:23.640 Representatives from the blood industry weren't eager to introduce screening 0:18:23.640 --> 0:18:27.080 procedures either. Not only would it be expensive, it would 0:18:27.119 --> 0:18:31.480 also reduce their inventory. Plus there were still only three 0:18:31.640 --> 0:18:34.520 known cases of people with heemophilia coming down with the 0:18:34.560 --> 0:18:38.600 new disease. It seemed totally possible that Bruce Evatt from 0:18:38.640 --> 0:18:43.720 the CDC was overreacting. Perhaps most surprisingly, the leaders of 0:18:43.760 --> 0:18:47.480 the National Humophilia Foundation, the country's largest advocacy group for 0:18:47.520 --> 0:18:51.960 people with chemophilia, were also not inclined to heed Eviitt's warnings. 0:18:53.000 --> 0:18:55.680 Their problem was that if Ebitt was right, it could 0:18:55.720 --> 0:18:58.840 mean giving up the clotting factor that had transformed so 0:18:59.000 --> 0:18:59.760 many patients. 0:18:59.840 --> 0:19:04.479 Line, so when you're talking to the hemophila community, you 0:19:04.520 --> 0:19:08.040 know they don't want to hear this. Science has given 0:19:08.080 --> 0:19:11.359 them a drug that has been a miracle drug for 0:19:11.440 --> 0:19:14.560 these patients, and now you're can tell them it's no good, 0:19:15.200 --> 0:19:17.800 it may be killing them. And it's only on the 0:19:17.840 --> 0:19:21.840 basis that three patients. And so you had to repeat 0:19:21.880 --> 0:19:23.800 it again and again and again and again and again again, 0:19:24.280 --> 0:19:27.240 and each time you begin to get a few more converts. 0:19:28.000 --> 0:19:30.920 But there was a large part of the hemophilic community 0:19:30.960 --> 0:19:31.679 didn't want to hear it. 0:19:34.760 --> 0:19:36.960 Val Bias, whom you heard from at the beginning of 0:19:36.960 --> 0:19:40.719 this episode, says he understands why leaders from the hemophilia 0:19:40.760 --> 0:19:42.600 community were so skeptical at the time. 0:19:43.440 --> 0:19:46.040 I think people make the best decisions they can with 0:19:46.119 --> 0:19:49.960 the information they have, and I think another prevailing piece 0:19:50.080 --> 0:19:54.600 of their experience was they had lived through hemophilia with 0:19:54.640 --> 0:19:58.560 no treatment. They knew what that was like, you know, 0:19:58.640 --> 0:20:01.600 they knew what those life inspects sencies were like, and 0:20:02.480 --> 0:20:04.720 they did not want to return to that. They didn't 0:20:04.760 --> 0:20:08.640 have an alternative for their patients if they told everybody 0:20:08.640 --> 0:20:11.119 to stop treating but to return to that life. 0:20:10.880 --> 0:20:15.840 Before facing resistance on all sides, Bruce Evitt and his 0:20:15.920 --> 0:20:19.440 CDC colleagues felt sure that the crisis was only going 0:20:19.480 --> 0:20:29.960 to get worse. By the fall of nineteen eighty two, 0:20:30.320 --> 0:20:34.120 the CDC had identified four more people with hemophilia who 0:20:34.119 --> 0:20:38.040 had contracted AIDS. That brought the total number of known 0:20:38.080 --> 0:20:39.119 cases to seven. 0:20:39.680 --> 0:20:42.800 Doctors believe they found the first solid evidence this disease 0:20:42.880 --> 0:20:46.520 is spreading to new segments of the population by blood transfusion. 0:20:46.920 --> 0:20:49.960 From Evatt's point of view, either the FDA had to 0:20:50.000 --> 0:20:53.200 tell the blood industry to stop accepting blood and plasma 0:20:53.200 --> 0:20:56.320 from people who were at high risk for AIDS, or 0:20:56.480 --> 0:21:00.520 the blood industry needed to do it voluntarily. Over the 0:21:00.560 --> 0:21:04.360 next several months, Evatt and his colleagues traveled across the country, 0:21:04.480 --> 0:21:07.639 privately urging leaders of plasma companies and blood banks to 0:21:07.720 --> 0:21:12.000 adopt new screening procedures because of budget cuts at the CDC, 0:21:12.600 --> 0:21:14.000 Evitt paid his own way. 0:21:14.920 --> 0:21:18.000 It was really a busy time because I was traveling 0:21:18.000 --> 0:21:21.760 most of the time and then trying to carry on 0:21:21.840 --> 0:21:25.760 the stuff at the office at the same time. Usually 0:21:25.760 --> 0:21:26.679 I was so tired. 0:21:29.480 --> 0:21:33.960 Only one pharmaceutical company, the produced Factor, took Evatt's warnings seriously. 0:21:34.720 --> 0:21:38.240 President of Alpha Therapeutics, Tom Drees said he was knocked 0:21:38.240 --> 0:21:42.520 off his chair by the data suggesting bloodborne transmission. Drease 0:21:42.640 --> 0:21:45.639 agreed to begin screening out high risk donors right away. 0:21:46.080 --> 0:21:49.840 The difference in our screening program started in December of 0:21:49.880 --> 0:21:54.400 eighty two was it was direct questioning. Usually we'd handed 0:21:54.440 --> 0:21:56.600 the donor a sheet, he'd check out the things, but 0:21:56.680 --> 0:21:59.720 this was now looking him in the eye rather delicate 0:21:59.720 --> 0:22:02.520 such way should say are you a male homosexual? Are 0:22:02.520 --> 0:22:03.520 you a drug abuser? 0:22:04.680 --> 0:22:07.879 At first, the heads of other plasma companies were furious 0:22:07.880 --> 0:22:13.159 with Tom Treese's decision, but eventually they followed suit. Evatt 0:22:13.200 --> 0:22:16.000 faced more intense resistance from the nonprofit sector of the 0:22:16.000 --> 0:22:19.080 blood industry. The blood banks, like the Red Cross, which 0:22:19.119 --> 0:22:22.800 relied on donations for their inventory. One of the most 0:22:22.840 --> 0:22:26.879 outspoken critics of donor screening was doctor Joseph Bovee, a 0:22:26.960 --> 0:22:29.679 Yale Medical School professor who led one of the largest 0:22:29.680 --> 0:22:33.720 blood banking associations in the country and chaired the FDA 0:22:33.760 --> 0:22:35.640 committee dedicated to blood safety. 0:22:36.000 --> 0:22:39.680 There's not enough evidence to finger any population or a 0:22:39.760 --> 0:22:43.439 subset of individuals and say this group should not be 0:22:43.520 --> 0:22:46.760 allowed to donate blood. 0:22:46.880 --> 0:22:50.480 To understand where blood bankers like Bovy were coming from, 0:22:50.600 --> 0:22:53.840 it's important to consider how difficult it already was for 0:22:53.920 --> 0:23:00.560 them to find enough donors to satisfy demand of blood 0:23:00.560 --> 0:23:02.840 donation had come during World War II. 0:23:03.920 --> 0:23:07.840 In America, patriotic citizens are giving their blood to save 0:23:07.880 --> 0:23:09.680 the lives of their soldiers and sailors. 0:23:10.240 --> 0:23:13.320 Pretty much ever since, blood banks have been struggling to 0:23:13.359 --> 0:23:15.320 attract as many donors as they needed. 0:23:15.680 --> 0:23:18.200 For the past quarter century, on government request, the Red 0:23:18.240 --> 0:23:22.160 Cross has tried to organize community blood banks with voluntary donors. 0:23:22.359 --> 0:23:24.720 They've managed to collect less than half of these seven 0:23:24.760 --> 0:23:26.280 million pints needed annually. 0:23:26.560 --> 0:23:29.240 Journalist Douglas Starr again, after World. 0:23:29.119 --> 0:23:31.880