The AIDS Crisis: Episode 4 - Blood

Hey, this is Leon Napok. I'm the host of Fiasco, but you may also know me from the podcasts Slowburn, 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.

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. So I had an extended family. There were about fifty of us in Buffalo, and 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.

Chemophilia 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 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 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 Dracua and the creature from the Black Lagoon. His grandmother would give him tangled balls of thread that he would carefully untie like homemade puzzles. 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 Buffalonians have a particular accent was altered because I spent so much time in the hospital with professionals who aren'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.

And there was a paragraph on hemophilia, and I was like, wow, people actually know what it is. And I read that paragraph and it said my life expectancy would be twenty years old. And I was devastated.

For long stretches of his young life, this was Valbias's reality, visiting the hospital, managing pain, expecting to die young. Then in the late sixties, a new treatment was developed that revolutionized life for people with hemophilia.

You're looking at something that will let a hemophiliac live and bleed like a normal person.

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 chemophilia no longer had to rush to the hospital every time they had a bleeding episode.

It is called Factor eight.

You 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 one hundred times more effective at clotting blood than raw plasma very quickly. It caused the life expectancy of people with chemophilia 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. He even thought. After I talked to other men with heemophilia, many of them didn't feel like they could have a family or normal life, and 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 twenty thousand different people, way more than a dozen or so it took to make the old treatment. If just one of those twenty thousand donors was carrying a blood borne disease, the person receiving the treatment could become infected. This kind of contamination had long been a risk for people with hemophilia. Thal Bias had gotten hepatitis B from a blood transfusion

Blood banks and plasma centers may be spreading a new and mysterious ailment called AIDS.

Cases go from two to four to eight.

We don't really have any proof that 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 in 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

If anybody are going to get a blood born disease first, it's going to be patients with hemophilia, because they get them all.

This is doctor Bruce Evatt in nineteen eighty one. He was working at the Centers for Disease Control, where he served as a point man on the hemophilia community. Evatt had joined the CDC in the mid seventies, a strange period when the agencies seemed to be losing its relevant.

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.

There was no general agreement in the scientific community as what this disease was, whether it was even infectious. Okay, and there were all kinds of postulations being put on, and everybody wanted to win the Nobel Prize by getting the correct one out there.

Researchers are now studying blood and other samples from the victims trying to learn what is causing the disease. So far they have had no luck.

This was more or less the situation in January of nineteen eighty two when Evitt received an alarming phone call from Miami, Florida. The person calling was a doctor who had lost a patient to numasistus pneumonia. Unlike so many others who had recently died of the same thing, this patient was a straight, married man. The reason the doctor in Miami thought to call Bruce Evitt was that the patient also had hemophilia.

And he says, I've got a patient I think that died from contaminated factor. The patient had all these symptoms, and he was not a homosexual, and he died before we could make a diagnosis.

The doctor suspected the source of the infection was clotting factor. That put Evit on high alert if more cases of pneumacistus were to start showing up in patients with hemophilia. The ramifications would be grave for starters, it would bolster the theory that the new disease was a blood born virus, and it could mean that the country's entire blood supply was compromised. Before long, Evatt heard about several more suspected cases and.

Suddenly, bang bang bang, three of them within a short period of time. That you could excuse one case of hemophilia with this syndrome, but three, and if you got more, you know, the odds were going through the roof in terms of probability.

Ev It became convinced that the new disease had to be bloodborne. That meant 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 hull 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, Oh, please pretch now to visit your local hospital or community blood bank.

Unlike the blood banks, the for 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 indivi vidual plasma donations. There simply aren't enough altruistic people in the world to meet that

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 Starr is the author of Blood, An Epic History of Medicine and Commerce.

Where are they going to 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 alcoholics, and the drug addicts sell their plasma, and that population tends to have higher rates of diseases.

Throughout the nineteen sixties and seventies, plasma companies opened collection centers in marginalized communities across the country. They also took their operations into a Matamerica's prisons.

Prisoners are able to earn a little money to buy the nicety, truth based and smacks.

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.

They're paid about eight dollars a leter. They get six dollars of the money. The rest goes under the ind Maade welfare upon.

The prevalence of blood born diseases tends to be higher than average among people in prison. If the new disease really was a blood born 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 Erwin Memorial, the largest nonprofit blood bank in San Francisco, they made up

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.

Eviitt 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. Evatt's proposal received immediate pushback. Here again is journalist Douglas Starr.

Gay donors happened 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 groups they wanted us 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 misagenation blood laws that divided black blood from white.

A 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 heemophilia coming down with the new disease. It seemed totally possible that Bruce Evatt from

Line, so when you're talking to the hemophila 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're can tell them it's no good, it may be killing them. And it's only on the basis that three patients. And so you had to repeat it again and again and again and again and again again, and each time you begin to get a few more converts.

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 inspects sencies were like, and they did not want to return to that. They didn't have an alternative for their patients if they told everybody to stop treating but to return to that life.

Before facing resistance on all sides, Bruce Evitt and his CDC colleagues felt sure that the crisis was only going to get worse. By the fall of nineteen eighty two, the CDC had identified four more people with hemophilia who had contracted AIDS. That brought the total number of known cases to seven.

Doctors believe they found the first solid evidence this disease is spreading to new segments of the population by blood transfusion.

From Evatt'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, Evatt 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, Evitt paid his own way.

It was really a busy time because I was traveling most of the time and then trying to carry on the stuff at the office at the same time. Usually I was so tired.

Only one pharmaceutical company, the produced Factor, took Evatt's warnings seriously. President of Alpha Therapeutics, Tom Drees said he was knocked off his chair by the data suggesting bloodborne transmission. Drease agreed to begin screening out high risk donors right away.

The difference in our screening program started in December of eighty two was it was direct questioning. Usually we'd handed the donor a sheet, he'd check out the things, but this was now looking him in the eye rather delicate such way should say are you a male homosexual? Are you a drug abuser?

At first, the heads of other plasma companies were furious with Tom Treese's decision, but eventually they followed suit. Evatt faced more intense resistance from the nonprofit sector of the blood industry. The blood banks, like the Red Cross, which

There's not enough evidence to finger any population or a 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 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 request, the Red Cross has tried to organize community blood banks with voluntary donors. They've managed to collect less than half of these seven million pints needed annually.

Journalist Douglas Starr again, after World.

War Two, it was very difficult to collect blood. That's tied into the decline of factories, the decline of unions, the fractionating the American public were just not the collective that we used to be, so even in eighty one eighty two, 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 banks supply. Additionally, some blood bankers believe 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 Bovie and the blood banks continued to resist Bruce Evitt 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 Evit had was a theory.

I was worried today that a new and frightening disease as being spread by blood transfusions. How doctors are seeing it in children.

In October of nineteen eighty two, new evidence emerged that Everett's theory was right. That month, Marcus Conant, 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 Conant'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 forty eight 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 up on to the baby boy.

At San Francisco's Moffett Hospital, doctors are treating a twenty month old boy, possibly the youngest victim ever of AIDE syndrome.

I mean that was kind of the final a nail in the coffin, if you will. There had been other suggestions that this thing was a bloodborne disease, but that baby's case clinched it.

When worried about the baby got back to Bruce Evitt 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. Thought he wouldn't be any any argument. You know, there it is light out.

On January fourth, nineteen eighty three, Evitt 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 represents of the hemophilia community.

These are all people who are interested in and working on the problem of AIDS acquired immune deficiency syndrome. It is a disease.

This time the meeting took place on the CDC's home turf in Atlanta, Georgia, and it attracted more than one hundred 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 eventive measures once they hope to target to the high risk groups.

The CDC's presentations began at eight thirty in the morning. Evitt carefully laid out the latest evidence indicating that AIDS was bloodborne. In addition to the baby boy, there were now eight people with heemophilia who were known to have developed AIDS. Then, one of Evatt's colleagues proposed a new

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 what 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 ninety 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

Well, the blood bankers arguments were that here 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 aid through the blood supply looked tiny, and preserving access to a life saving product outweighed the risk. But to Ebitt, 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

As the meeting in Atlanta dragged on, things got increasingly tense. At one point, the president of a blood bank warned Evitt not to overstate the facts. Eviitt 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 well 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.

Eviitt realized that yet another meeting was going to end in a stalemate. Ben one of his CDC colleagues, an epidemiologist named Don Francis, lost his cool.

He famously banked his fist on the table and hollered, how many people have to die? Is three enough? Six ' ten? Is one 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

After the meeting, a Red Cross official wrote an internal memo questioning not just Evatt 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 he could get funding for a new fifteen million dollar virology lab.

There is a new sign of the times, an 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 nineteen eighty three, nearly six months after the meeting in Atlanta, Blood Bank spokesman and FDA advisor Joseph Bovie 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 continue 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

Whitfield donated here about fifty times last year until he died of AIDS. When I learned of Whitfield's death, Cutter Laboratory is recalled sixty four thousand vials which may contain Whitfield's blood.

If further of these kinds of incidents occurred, 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 NaHF 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 the 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 NaHF 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 NAHEF 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 product 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 diluted 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 the 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 age.

On April twenty third, nineteen eighty four, explosive news came out of Washington that finally broke the stalemate between the blood industry and its critics.

At the CDC, US Government of Scientist announced in Washington today they have isolated a virus they believe causes age.

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 our age 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

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.

So it ended up taking another year before the AIDE test became available, but by the summer of nineteen eighty five, all blood banks and commercial plasma centers were using the test to screen donations. Somehow, that wasn't the end of the crisis. Astonishingly, 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 nineteen seventy seven not donate blood.

That ban remained unchanged until twenty fifteen, and it still exists in a modified form today. We now know that thirty five thousand Americans were infected with HIV through blood and blood products. Among them were nearly ten thousand 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 in New York 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 eighties, 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 two thousand and eight he became the first black CEO of the National Hemophilia Foundation. In that post, Bias worked to reform an organization that some twenty five 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 humophilia, 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 nineteen eighty eight 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 pneumaicistis pneumonia. A few months later, she had another one now 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, Oscar night was our favorite night of the year, and avid reader of books, and it got to the point where she'd get to

When he was a kid, bias his 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 the hospital, so she could only sort of smile, 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 his friends, and the doctor called me out of the room one afternoon. You got to make these people go home. Your wife is ready to go, and she can't go because you're all here

So I can't explain this, something deep and sadly.

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 bow Bias, who died in December of twenty twenty one, about six months after we interviewed him. Fiasco is produced by Andrew Parsons, Sam Grahm Felsen, Madeline kaplan Ula Kalpa, and me Leon Napock. Our researcher is Francis Carr. Editorial support from Jessica Miller and Miller waswas archival research by Michelle Sullivan. The vice