The AIDS Crisis: Episode 4 - Blood

Hey, this is Leon Nefak. I'm the host of Fiasco, but you may also know me from the podcast's Slow Burn, Think Twice, Michael Jackson, and Backfired, The Vaping Wars. I'm excited to be sharing with you the next season of Backfired, titled Attention Deficit, which is now available exclusively on Audible. Backfired is a podcast about the business of unintended consequences. In the first season, my co-host Ariel Partes and I dove deep into the world of vaping and how the well-intentioned quest for a safer cigarette went awry. Now, we're tackling ADHD and how to push to destigmatize this hard-to-define childhood diagnosis has led to an explosion of stimulant use in kids as well as adults. It's a story about the promise of psychiatry to fix our brains and the power of the pharmaceutical industry to shape how we and our doctors think about what's wrong with us. To hear both seasons of Backfired, go to audible.com/backfired and start a free trial. That's audible.com/backfired. Fiasco is intended for mature audiences. For a list of books, articles, and documentaries we used in our research, follow the link in the show notes. Previously on Fiasco. It's mysterious, it's deadly, and it's baffling medical science. Federal health officials consider it an epidemic, yet you rarely hear a thing about it. We had no other resources but ourselves. I thought, well, my goodness, we're all dead. It's a disease first detected in the gay community that has now spread beyond that. When most of us get a cut, we start bleeding. Then, a minute or two later, our blood clots and the bleeding stops. Val bias knew from an early age that his blood didn't work like that. Growing up in Buffalo, New York, bias was always told he had to be careful in ways that other kids didn't. I think the general position was, "You can't do this. You can't do that." No wrestling with your cousins, that kind of thing. I had an extended family. There were about 50 of us in Buffalo. Of course, they all understood hemophilia because we had had family members who had had it in the past and had passed away from it. Hemophilia is a rare bleeding disorder that can turn an everyday injury into a life-threatening crisis. It affects mostly men and boys. Those who have it are typically born with a gene mutation that affects the body's ability to produce certain proteins. These proteins are what make normal clotting possible. And without them, even something as minor as a bumped knee can cause internal bleeding. Some bleeding episodes can feel like you broke the bone, but it's really just the bleeding, filling the joint or the bruise in a way that can be extremely painful. When bias was a kid, the way to treat these kinds of injuries was to receive transfusions of ice-cold plasma, a tea-colored component of blood that helps distribute proteins and nutrients throughout the body. I would sit there for six to eight hours with a blanket on me and my teeth chattering, waiting for the treatment to be over. It really was like an icy being dripped into your veins. To get his mind off the pain, bias would watch "I Love Lucy" and read and reread books about monsters, memorizing minute details about Dracula and the creature from the Black Lagoon. His grandmother would give him tangled balls of thread that he would carefully untie like homemade puddles. Bias was in and out of the hospital for treatments all the time. I knew that hospital better than many homes I lived in, I mean, top to bottom. Even my accent bulfoloneans have a particular accent was altered because I spent so much time in the hospital with professionals who weren't necessarily from the area. Bias tried to make the best of his situation, but the more he learned about hemophilia, the more he realized how different his outlook was from that of his peers. In sixth grade, he got a new science textbook at school and he looked up hemophilia in the index. For long stretches of his young life, this was Val Bias' reality. Visiting the hospital, managing pain, expecting to die young. Then, in the late 60s, a new treatment was developed that revolutionized life for people with hemophilia. The new treatment was known as clotting factor, or just factor for short. It was a powdered concentrate that came in a small vial, and like the icy transfusions Val Bias had been receiving for years, factor was made out of plasma. The difference was that factor could be stored in an ordinary refrigerator and was easy to self-administer. That meant people with hemophilia no longer had to rush to the hospital every time they had a bleeding episode. It is called factor eight. You'd probably have never heard of it. Frequent costly injections of a product made from the plasma of blood donors keeps them from bleeding to death. Factor was 100 times more effective at clotting blood than raw plasma. Very quickly, it caused the life expectancy of people with hemophilia to shoot up dramatically. To Val Bias, it was like a miracle. Among other things, it meant that he could now go off to college on his own. It was a reality that I could actually do. You even thought after I talked to other men with hemophilia, many of them didn't feel like they could have a family or a normal life. I think that clotting factor changed that reality for all of us. It made us seek professional careers we didn't think we could have. It made us reach for the stars because we no longer were tethered to the hospital. But factor came with a caveat. A single batch of it contained the combined plasma of as many as 20,000 different people. Way more than a dozen or so it took to make the old treatment. If just one of those 20,000 donors was carrying a bloodborne disease, the person receiving the treatment could become infected. This kind of contamination had long been a risk for people with hemophilia. Val Bias had gotten hepatitis B from a blood transfusion when he was in sixth grade. But with clotting factor, the risk of contracting a bloodborne disease was much, much higher. For Bias and thousands of others like him, factor was a life changing treatment. It seemed like a risk worth taking. I'm Leon Mayfac. From Audible originals and prologue projects, this is Viasco. Blood banks and plasma centers may be spreading a new and mysterious ailment called AIDS. Paces go from two to four to eight. We don't really have any proof that a nation's blood supply is contaminated. If there's even one infected unit, it's going to infect the whole thing. There were enough people dying in the community that you knew your number was going to come up at some point. In this episode, AIDS puts America's blood supply in jeopardy. But the absence of a consensus around what causes the disease makes it impossible to contain the spread. The term canary in the coal mine comes from an old method of detecting poisonous gases. Miners used to bring caged canaries with them into mines. And because gases kill canaries faster than they kill humans, the miners knew to get out immediately if one of the canaries killed over. People with hemophilia are often referred to as the canaries in the coal mine of blood-borne diseases. This is Dr. Bruce Evett. In 1981, he was working at the Centers for Disease Control, where he served as a point man on the hemophilia community. Evett had joined the CDC in the mid-70s, a strange period when the agencies seemed to be losing its relevance. The infectious disease community at that point felt that for the most part infectious diseases were conquered. The arrogance was that there were no more infectious diseases. We really didn't need a CDC anymore. But then a new disease appeared on the CDC's radar. As you've heard, the disease was initially observed in gay men. Then it started showing up in other populations, like injecting drug users and people from Haiti. For a long time, no one could figure out what was making all these people sick. Investigators have examined the habits of homosexuals for clues. The best guess is that some infectious agent is causing it. Some scientists feared from the start that the culprit was a blood-borne virus. But that was just a theory. This was more or less the situation in January of 1982, when Evett received an alarming phone call from Miami, Florida. The person calling was a doctor who had lost a patient to pneumocystis pneumonia. Unlike so many others who had recently died of the same thing, this patient was a straight married man. The reason the doctor and Miami thought to call Bruce Evett was that the patient also had hemophilia. The doctor suspected the source of the infection was clotting factor. That put Evett on high alert. If more cases of pneumocystis were to start showing up in patients with hemophilia, the roundifications would be grave. For starters, it would bolster the theory that the new disease was a blood-borne virus. And it could mean that the country's entire blood supply was compromised. Before long, Evett heard about several more suspected cases. "In suddenly, bang, bang, bang, three of them within a short period of time. You could excuse one case of hemophilia with this syndrome, but three, and if you got more, the odds were going through the rough in terms of probability." Evett became convinced that the new disease had to be blood-borne. That man, he needed to warn the blood industry right away. The blood industry is made up of two basic silos. On the one hand, there are nonprofits like the Red Cross, which rely on donations. Then, there are plasma companies that pay people for their blood. "Through its network of donor centers around the country, the Red Cross collects over one half of the nation's whole blood supply." If you donate to the Red Cross or another nonprofit blood bank, you're giving what's called whole blood. Whole blood is used for people who are undergoing surgery, or who have lost a lot of their own blood as a result of, say, a car accident. "Hi, this is Bob Hope. Please pledge now to visit your local hospital community blood bank." Unlike the blood banks, the four profit companies in the blood industry pay people for their blood. Or more accurately, they pay for their plasma. Plasma is the vital ingredient in clotting factor, which means people with hemophilia require a huge amount of it to live healthy lives. Producing a single year's worth of factor for one person can require more than a thousand individual plasma donations. There simply aren't enough altruistic people in the world to meet that level of demand through donations alone. But paying for plasma comes with its own unique risks. "It's the poor who line up before dawn waiting to sell their plasma, raw material for the blood company's products." If you're paying somebody for their blood, you're going to attract people who need the money desperately enough to want to give their blood. Douglas Star is the author of Blood, an epic history of medicine and commerce. Where are they gonna find people who are willing to sell plasma? Well, Skid Row. "Los Angeles, and on the city's Skid Row, a corner of that world blood market, the poor, the alcoholic and the drug addicts sell their plasma." And that population tends to have higher rates of diseases. Throughout the 1960s and 70s, plasma companies opened collection centers in marginalized communities across the country. They also took their operations into America's prisons. "Prisoners are able to earn a little money to buy the niceties. Two things, snacks, they buy it with their blood." Donna Shaw is a journalist who wrote about this practice in her book "Blood on Their Hands." These commercial blood centers were for-profit companies that were allowed to operate inside of these state prisons. "You're paid about eight dollars a liter. They get six dollars of the money. The rest goes into the inmate welfare fund." The prevalence of blood-borne diseases tends to be higher than average among people in prison. If the new disease really was a blood-borne virus, that meant a lot of the plasma being bought and sold by the plasma companies was at high risk for contamination. "They're not combining one or two or a dozen units of plasma. They're combining thousands and thousands of them in these huge vats, right? And so, if there's even one infected unit in that big vat, it's going to infect the whole thing." Bruce Evett at the CDC was deeply concerned about the plasma companies, but he was also worried about nonprofit blood banks like the Red Cross. In cities like New York and San Francisco, gay men were known for being a particularly reliable cohort of blood donors. At Irwin Memorial, the largest nonprofit blood bank in San Francisco, they made up 20 percent of the donor pool. If the new disease was being spread through blood, and it was disproportionately showing up in gay men, it seemed to Evett like a recipe for disaster. And because the whole blood collected by the nonprofits was used in a wide variety of patients, it wasn't just people with hemophilia who were at risk. Anyone who went to the hospital and needed a blood transfusion could be infected too. On July 27, 1982, Evett and a few colleagues from the CDC traveled to Washington for an emergency meeting convened by the Assistant Secretary of Health. It was attended by leaders from the blood industry, as well as the gay community and the hemophilia community. Representatives from the FDA, which had regulatory power over the blood industry, were also there. Evett gave a presentation aimed at convincing people that the new disease was being spread through blood. There was a lot of skepticism. It was a new idea introduced, okay? That this was a new infectious agent, that it was different from all other infectious agents, and that it was being transmitted by blood. Well, the first time anybody hears that, they're going to be skeptical. Evett urged the blood industry to start screening out any donors who came from groups that appeared to be at special risk. That included injecting drug users, gay men, and Haitian Americans, a community that was notably not represented at the hearing. Evett's proposal received immediate pushback. Here again, is journalist Douglas Star. Gay donors happen to be very good donors. They were very civic-minded as a group, and by excluding them, you're casting a pall over their citizenship. And it wasn't right. The other group they wanted to exclude also was Ivy drug users. So gay people were feeling you're lumping us with Ivy drug users when we're good citizens. It's not right. To many, the idea of screening out gay and bisexual men from the donor pool seemed like it would reinforce homophobic assumptions among the general public, that all men who had sex with men were infected and therefore dangerous. After the meeting in Washington, one gay advocacy group issued a statement arguing that screening out gay men as blood donors would be reminiscent of misidination blood laws that divided black blood from white. The gay community is eager to have reason on the project, not the kind of rhetoric and scapegoating that the proposed blood policy seems to indicate. Representatives from the blood industry weren't eager to introduce screening procedures either. Not only would it be expensive, it would also reduce their inventory. Plus, there were still only three known cases of people with hemophilia coming down with the new disease. It seemed totally possible that Bruce Evett from the CDC was overreacting. Perhaps most surprisingly, the leaders of the National Hemophilia Foundation, the country's largest advocacy group for people with hemophilia, were also not inclined to heed Evett's warnings. Their problem was that if Evett was right, it could mean giving up the clotting factor that had transformed so many patients' lives. So when you're talking to the hemophilia community, you know, they don't want to hear this. Science has given them a drug that has been a miracle drug for these patients. And now you can tell them it's no good. It may be killing them. And it's only on the basis of three patients. And so you had to repeat it again and again and again again and again and again. And each time you began to get a few more converts, but there was a large part of the hemophilia community that was here. Val Bias, whom you heard from at the beginning of this episode, says he understands why leaders from the hemophilia community were so skeptical at the time. I think people make the best decisions they can with the information they have. And I think another prevailing piece of their experience was they had lived through hemophilia with no treatment. They knew what that was like. You know, they knew what those life inspecciencies were like and they did not want to return to that. They didn't have an alternative for their patients. If they call everybody to stop treating, but to return to that life before. Facing resistance on all sides, Bruce Evett and his CDC colleagues felt sure that the crisis was only going to get worse. By the fall of 1982, the CDC had identified four more people with hemophilia who had contracted AIDS. That brought the total number of known cases to 7. Doctors believe they found the first solid evidence this disease is spreading to new segments of the population by blood transfusion. From Evett's point of view, either the FDA had to tell the blood industry to stop accepting blood and plasma from people who were at high risk for AIDS or the blood industry needed to do it voluntarily. Over the next several months, Evett and his colleagues traveled across the country, privately urging leaders of plasma companies and blood banks to adopt new screening procedures. Because of budget cuts at the CDC, Evett paid his own way. It was really a busy time because I was traveling most of the time and then trying to carry on stuff at the office at the same time. Usually I was so tired. Only one pharmaceutical company that produced factor took Evett's warning seriously. President of Alpha Therapeutics, Tom Dries, said he was knocked off his chair by the data suggesting blood-borne transmission. Dries agreed to begin screening out high-risk donors right away. The difference in our screening program started in December of '82 was it was direct questioning. Usually we'd hand the donor a sheet and he'd check out the things. But this was now looking him in the eye. A rather delicate situation saying, "Are you a male homosexual? Are you a drug abuser?" At first, the heads of other plasma companies were furious with Tom Dries's decision. But eventually, they followed suit. Evett faced more intense resistance from the non-profit sector of the blood industry. The blood banks, like the Red Cross, which relied on donations for their inventory. One of the most outspoken critics of donor screening was Dr. Joseph Bovy, a Yale medical school professor who led one of the largest blood banking associations in the country, and chaired the FDA committee dedicated to blood safety. There's not enough evidence to finger any population or subset of individuals and say, "This group should not be allowed to donate blood." To understand where blood bankers like Bovy were coming from, it's important to consider how difficult it already was for them to find enough donors to satisfy demand. The heyday of blood donation had come during World War II. In America, patriotic citizens are giving their blood to save the lives of their soldiers and sailors. Pretty much ever since, blood banks have been struggling to attract as many donors as they needed. For the past quarter century on government requests, the Red Cross has tried to organize community blood banks with voluntary donors. They've managed to collect less than half of the seven million points needed annually. Journalist Douglas Starr again. After World War II, it was very difficult to collect blood that's tied into the decline of factories, the decline of unions, the fractionating of the American public. We're just not the collective that we used to be. So even in '81, '82, blood bankers were having problems getting enough blood, so it was always a crisis. Making it harder for people to donate blood would inevitably reduce the blood bank's supply. Additionally, some blood bankers believed that making a big deal about AIDS during the donation process would create an association between giving blood and contracting the disease. That in turn would scare away donors who weren't even in high-risk groups. So, Joseph Bovy and the blood banks continued to resist Bruce Evett and his CDC colleagues. The evidence for this, in my view, is very weak and very early. We don't really have any proof yet that the nation's blood supply is contaminated. If the blood banks were going to jeopardize their already limited blood supply, they wanted definitive proof that AIDS was being spread through their products. They wanted to see, under a microscope, the infectious agent that was supposedly causing AIDS. Even with seven cases of people with hemophilia catching the disease, all Evett had was a theory. I was worried today that a new and frightening disease is being spread by blood transfusions, and now doctors are seeing it in children. In October of 1982, new evidence emerged that Evett's theory was right. That month, Marcus Konant, the San Francisco doctor you heard from in our previous episode, hosted one of the first national conferences on AIDS. During the conference, one of Konant's colleagues heard a story about a baby boy who appeared to have contracted AIDS after getting a blood transfusion. He had neonatal jaundice, and so they had given him a blood transfusion. And following that transfusion, he became ill, and he developed what appeared to be AIDS. And his only conceivable vector, the only conceivable course of infection, was from the transfusion. When investigators tracked down the baby's donors, they found that one of them was a 48-year-old man who had recently died. Based on his medical history, it was almost certain that he had died of AIDS, and that he had passed it on to the baby boy. At San Francisco's Moffat Hospital, doctors are treating a 20-month-old boy, possibly the youngest victim ever of AIDS syndrome. I mean, that was kind of the final nail in the coffin, if you will. There had been other suggestions that this thing was a blood-borne disease, but that baby's case clinched it. When word about the baby got back to Bruce Evett at the CDC, he thought the conversation around the blood supply was now going to change. That was the case we thought would convince him. We thought that'd be the slam doc. And so we called this meeting, and we thought this would just be pro-former. He thought he wouldn't be any argument. You know, there it is, light up. On January 4, 1983, Evett and his CDC colleagues brought together the same set of stakeholders who had attended that ill-fated meeting in Washington five months earlier. Once again, a group of blood industry leaders gathered alongside gay advocacy groups and representatives of the hemophilia community. These are all people who are interested in and working on the problem of AIDS, acquired immune deficiency syndrome. This time, the meeting took place on the CDC's home turf in Atlanta, Georgia, and it attracted more than 100 journalists and other observers. When doctors and scientists are finished here, they still will not know the cause of AIDS, but they are hoping to come away from this meeting with one thing, and that is a list of preventive measures, ones they hope to target to the high risk groups. The CDC's presentations began at 830 in the morning. Evett carefully laid out the latest evidence indicating that AIDS was bloodborne. In addition to the baby boy, there were now eight people with hemophilia who were known to have developed AIDS. Then, one of Evett's colleagues proposed a new idea for screening out high-risk donors. Instead of asking people if they were gay or if they used injecting drugs, the plasma companies and the blood banks could conduct a blood test. Not for AIDS, since an AIDS test didn't exist, but for another bloodborne disease. Hepatitis B, Douglas Star explains. There was this thought, you know, a lot of people with AIDS have hepatitis B. What if we do the hepatitis test as sort of a surrogate for the AIDS test? So the idea is, could we test donors for the hepatitis core and rule them out even though we don't know it causes AIDS? It wouldn't be a perfect test, but the correlation between people with AIDS and people carrying antibodies for hepatitis B was very high, nearly 90 percent, until a real AIDS test could be developed. It seemed like a strong interim solution. The gay rights advocates of the meeting in Atlanta liked the idea of testing the blood itself. It was better than trying to ban entire groups of people from donating. But the blood bankers rejected it, saying it would be too expensive. One of them estimated the testing every donor for hepatitis B would cost the country's beleaguered blood banks $100 million a year. Well, the blood bankers arguments were that we were asking them to disrupt their whole blood bank screening on the basis of eight patients. And what everybody didn't recognize at the time is how prevalent this disease was already in the population. To the blood bankers, the chance of getting AIDS through the blood supply looked tiny and preserving access to a life-saving product outweighed the risk. But to ev it, it was clear that the eight patients were only the tip of the iceberg, a terrifying proxy for all the as-yet-undiagnosed cases out there. When he saw cases go from two to four to eight, that expresses a doubling rate. Epidemiologists in CDC don't just look at raw numbers, they look at what is the curve doing, and this curve was very steep. Whereas blood bankers think of the word bank, they act like bankers. They think of things like inventory and supply. So to them and to people in the plasma industry who think like CEOs, they're thinking eight cases is a concern, but out of 10 million transfusions, it's not that significant. Let's keep an eye on it, but let's not ring the alarm bell. As the meeting in Atlanta dragged on, things got increasingly tense. At one point, the president of a blood bank warned Evet not to overstate the facts. Evet felt he was being called a bad scientist to his face. That just made me absolutely furious. After all, we went in and expecting to get one, at least something we didn't get anything. I really got furious, I was very difficult to hold my temper, but I never doubted that we weren't right. Evet realized that yet another meeting was going to end in a stalemate. Then one of his CDC colleagues, an epidemiologist named Don Francis, lost his cool. We famously banked his fist on the table and hollered how many people have to die. Is three enough, six, ten, is a hundred enough? Just give us the number so we could set the threshold. And years later, I connected with Francis and he was still furious. He said, I just couldn't believe these guys. It was like having a bend in the train track and sitting there and you hear the whistles and the singles are blinking and the tracks are beginning to shake and they're saying there's no train coming. After the meeting, a red cross-official wrote an internal memo questioning not just Evet and his colleagues, but the entire CDC as an institution. It has long been noted the official wrote that CDC increasingly needs a major epidemic to justify its existence. The memo suggested the CDC had selfishly exaggerated the threat of AIDS in part so it could get funding for a new fifteen million dollar virology lab. When it came to AIDS and the blood supply, the red cross-official concluded, we cannot depend on the CDC to provide scientific, objective, unbiased leadership. Nearly three months after the meeting in Atlanta, the FDA finally issued guidelines for the blood industry. But to Evet, they looked tepid, a half-step that fell far short of what he and his colleagues have been calling for. Instead of mandating surrogate tests to screen for hepatitis B or even questionnaires designed to screen out high-risk donors. The blood industry was merely required to present educational materials about AIDS and ask those in high-risk groups not to give blood or plasma. There is a new sign of the times and appeal that three diverse groups of potential donors not donate blood or blood products. Some blood banks did experiment with hepatitis B tests and tougher questioning of donors. But for the most part, they did little to prevent high-risk groups from giving blood. In June of 1983, nearly six months after the meeting in Atlanta, blood banks spokesman and FDA advisor Joseph Boevey insisted once again that there was just too much uncertainty to make any sudden moves. If anyone has gotten AIDS from these transfusions, it's a mere handful of people. Of course, in medicine you can never be sure of anything, really. Are you very concerned that if this trend continues, there will be significantly more risk to the blood supply? I have trouble seeing a trend as yet. The four profit companies that produced clotting factor also seemed to want to do as little as they could get away with. Instead of testing donors for hepatitis B, most commercial plasma centers continued to rely on questionnaires. This had the effect of furthering stigma against gay men, drug users, and Haitian immigrants, while also holding individual donors responsible for protecting the blood supply. Remember, at this point, there was still no AIDS test available, and therefore no way to know if you had the disease unless you were showing symptoms. More than once, people who sold plasma were later discovered to have AIDS, leading to recalls of entire batches of factor. What field donated here about 50 times last year until he died of AIDS? When it learned of Whitfield's death, Cutter Laboratory is recalled 64,000 vials which may contain Whitfield's blood. If further of these kinds of incidents occur, there is some risk that this product, which is necessary for the good health of the hemophiliacs, might become unavailable. In spite of these recalls, the factor companies still did not change their practices. Meanwhile, the National Hemophilia Foundation continued to encourage the use of clotting factor. One top medical advisor to the NHF said that his position was "business as usual." "There is no evidence," he said, that treatment per se is the cause of AIDS. "In New York, the National Hemophilia Foundation is worried that patients may forego their normal treatment." "It is extremely important that hemophiliacs continue to use their much-needed blood clotting factor products because the risk of not using it is greater than the risk of AIDS itself." Donna Shaw, the author of Blood on Their Hands, says it was no coincidence that the NHF received a lot of its funding from the factor companies. A lot of patient advocacy groups are in that position where they're accepting money from the pharmaceutical industry in order to advocate for their patients. And the NHF was in bed with pharma a little more than most, I think. Shaw says that leaders in the hemophilia community took their cues from companies making blood products. And because of that, they saw the situation through rose-colored glasses. "They gave them the old one-in-a-million speech, right? Oh, only gay men are getting AIDS, one-in-a-million hemophiliacs. Don't worry, don't worry. They deluded themselves into believing this. They wanted to do the right thing, but you know, they bought the literally the company line." Val Bias, who eventually became the head of the National Hemophilia Foundation, says it wasn't necessarily that simple. While the NHF certainly had some agenda setting power, Bias says that it was the local chapters of the organization that were the main points of contact for patients and their families. "Individual chapters control the information that's given out to their patients. And I know in the Bay Area, the mom who ran the chapter was just like, 'I wasn't going to send out a letter saying to stop treating because I knew what treatment was like before we didn't have clotting factor.' And maybe that was selfish, inappropriate, uneducated, whatever you want to call it. But you know, that is an emotionally affected decision because you're living with a disease. This is NBC Nightly News reported by Tom Brokaw. Good evening. Researchers now believe that they have made a monumental breakthrough in the fight against AIDS. On April 23rd, 1984, explosive news came out of Washington that finally broke the stalemate between the blood industry and its critics at the CDC. "The virus would come to be known as HIV. The fact that scientists had identified it was hailed as a major step forward. And the French have made a similar breakthrough in their AIDS research, but this breakthrough makes it possible to identify AIDS victims and carriers." Here, finally, was the definitive evidence the blood industry had been demanding, the infectious agent visible under a microscope. And to be clear, this was not just a big deal in the context of the blood supply debate. The identification of HIV confirmed once and for all that AIDS was spread through blood and other bodily fluids. It was also an important step towards developing a blood test. One that would allow doctors to detect signs of the disease much earlier, in people who had not yet developed AIDS symptoms. "This means a blood test can be developed within a few months to detect AIDS. First, this could identify victims earlier, and secondly, this could prevent the spread of AIDS by testing blood and blood banks or donors." It ended up taking another year before the AIDS test became available. But by the summer of 1985, all blood banks and commercial plasma centers were using the test to screen donations. Somehow, that wasn't the end of the crisis. Estonishingly, when the FDA required the AIDS test for all new blood and plasma donations, it did not require all existing units of blood and plasma products in storage to be tested. Here again is Douglas Star. "There were still tons of vials of factory in the pipeline and in the refrigerators of people with hemophilia, ready to be used. There were millions of units of blood, plasma, and clotting factory collected in the old way that was waiting to be used all over the country, so I compare it to trying to make a U-turn with a Titanic." At least one American company continued selling those untested blood products to other countries, resulting in new infections around the world. Meanwhile, the FDA instituted a new policy. Despite the availability of the new HIV test, there would now be a donation ban on recent immigrants from Haiti, as well as men who had sex with men. "The Food and Drug Administration has recommended that any man who has had sex with another man since 1977 not donate blood." That ban remained unchanged until 2015, and it still exists in a modified form today. We now know that 35,000 Americans were infected with HIV through blood and blood products. Among them were nearly 10,000 people with hemophilia, more than half of their entire population in the United States. Within the community, it is sometimes referred to as the hemophilia Holocaust. "I'd always suspected there were enough people dying in the community that you knew your number was going to come up at some point." Val Bias ended up moving to San Francisco and working at a camp for kids with hemophilia. Throughout the 80s, his campers and counselors were dying of AIDS, and Bias became involved with a support group for friends and family. You know, it became a real solemn, emotional thing to attend those meetings because as those support groups grew, it was first one person, and then three people, and then five people, and then ten people, and the kids were getting sick too. Seven, eight, nine-year-old kids who were coming down with HIV, and they were not surviving." During this same period, there were thousands of gay men in San Francisco who were also dying of AIDS. As the crisis tore through both communities, they came together. "And as we began to look for answers, that's when we became seriously involved with the gay community. They were the only ones that had literature and information about what this was, how it progressed." Bias went on to be a leading spokesman for the hemophilia community, and in 2008, he became the first black CEO of the National Hemophilia Foundation. In that post, Bias worked to reform an organization that some 25 years earlier had repeatedly encouraged its members to take a deadly product. Bias approached the task with the understanding of a person who himself suffered from hemophilia, and who understood the trade-offs intuitively. Although the foundation could have made different decisions, they were not the same kind of experts that you had on when the CDC and the FDA. They were individuals with hemophilia, and they were parents of children with hemophilia. And they did not, in my opinion, gain anything from the decisions that they made. In fact, most of them either died themselves or their children died. And, you know, I always feel for those who would paint them as villains when they were also the victims. It was back in 1988 that Bias found out that he had, at some point, contracted HIV from factor. He had also unwittingly passed it along to his wife, Katie. Within a few months, she had a first bout with new assistous pneumonia. A few months later, she had another one, and now there are, and her health continued to deteriorate over the next few years. And it was hard to watch her lose the ability to do things. You know, she was a great lover of movies, you know. I asked her night was our favorite night of the year, and Abbott read her books, and it got to the point where she get to went into the book, and she couldn't remember the beginning. She lost interest in being able to sit through a whole movie. And, you know, I just, I cared for her. You know, I did everything I could to make her comfortable and treat her, and then, you know, so she felt a part of things. When he was a kid, Bias' family, doctors, nurses, and friends, made his time in the hospital more bearable. Years later, he tried to do the same for his wife. And when she went into the hospital for that last time, she lost her ability to speak while she was in hospital. So she could only sort of smile and, and, you know, you could see the recognition in her eyes when all of the friends came together, and we sat in that room and we just told stories about the good times we had had us friends. And the doctor called me out of the room one afternoon and said, he got to make these people go home. Your wife is ready to go, and she can't go because you're all here every day. So I sent everybody home. And, you know, within a few hours, I got in the bed with her. And she passed quietly, you know, peacefully. And, all very sad, so. In our next episode, a movie star helps awaken the country to the AIDS crisis and convinces the president to pay attention. President Reagan said today that Rock Hudson would always be remembered for his humanity. And, on hearing of his death, the House of Representatives agreed to double the amount of AIDS funds for research next year. Fiasco is presented by Audible originals and prologue projects. This episode is dedicated to the memory of Val Bias, who died in December of 2021, about six months after we interviewed him. Fiasco is produced by Andrew Parsons, Sam Graham-Felson, Madeline Kaplan, Lulacolpa, and me, Leon Nefok. Our researcher is Francis Carr, editorial support from Jessica Miller and Noor Waswas, archival research by Michelle Sullivan. The vice president of Audible Studios is Mike Charsick, the editor-in-chief for Audible originals is David Blum. This season's music is composed by Edith Mudge, additional music by Nick Sylvester of God Mode, Joel St. Julian, and Dan English, Noah Hecht, and Joe Valley. Our theme song is by Spatial Relations. Our credit song this week is "Blood in My Vains" by Elka Robotai, thanks to the Vanderbilt television archive and ABC news source. Music licensing courtesy of Anthony Roman, audio mix by Erica Wong with additional support from Selena Urabe. Our artwork is designed by Teddy Blanks at Chips and Y. Thanks to Peter Yasi, and thanks to you for listening. See you next week.