Speaker 1: Hey, this is Leon Napok. I'm the host of Fiasco,
Speaker 1: but you may also know me from the podcasts Slowburn,
Speaker 1: Think Twice, Michael Jackson, and Backfired the Vaping Wars. I'm
Speaker 1: excited to be sharing with you the next season of Backfired,
Speaker 1: titled Attention Deficit, which is now available exclusively on Audible.
Speaker 1: Backfired is a podcast about the business of unintended consequences.
Speaker 1: In the first season, my co host Ril Pardess and
Speaker 1: I dove deep into the world of vaping and how
Speaker 1: the well intentioned quest for a safer cigarette went awry.
Speaker 1: Now we're tackling ADHD and how the push to destigmatize
Speaker 1: this hard to define childhood diagnosis has led to an
Speaker 1: explosion of stimulant use in kids as well as adults.
Speaker 1: It's a story about the promise of psychiatry to fix
Speaker 1: our brains and the power of the pharmaceutical industry to
Speaker 1: shape how we and our doctors think about what's wrong
Speaker 1: with us. To hear both seasons of Backfired, go to
Speaker 1: audible dot com slash Backfired and start a free trial
Speaker 1: that's audible dot com slash backfired. Fiasco is intended for
Speaker 1: mature audiences. For a list of books, articles and documentaries
Speaker 1: we used in our research. Follow the link in the
Speaker 1: show notes. Previously on fiasco.
Speaker 2: It's mysterious, it's deadly, and it's baffling medical science.
Speaker 3: Federal health officials consider it an epidemic, yet you rarely
Speaker 3: hear a thing about it.
Speaker 4: We had no other resources but ourselves. I thought, well,
Speaker 4: my goodness, we're all dead.
Speaker 5: It's a disease first detected in the gay community that
Speaker 5: has now spread beyond that.
Speaker 1: When most of us get a cut, we start bleeding.
Speaker 1: Then a minute or two later, our blood clots and
Speaker 1: the bleeding stops. Val Bias knew from an early age
Speaker 1: that his blood didn't work like that. Growing up in Buffalo,
Speaker 1: New York, Bias was always told he had to be
Speaker 1: careful in ways that other kids didn't.
Speaker 6: I think the general position was, you can't do this,
Speaker 6: you can't do that. No wrestling with your cousins, that
Speaker 6: kind of thing. So I had an extended family. There
Speaker 6: were about fifty of us in Buffalo, and of course
Speaker 6: they all understood hemophilia because we had had family members
Speaker 6: who had had it in the past and had passed
Speaker 6: away from it.
Speaker 1: Chemophilia is a rare bleeding disorder. That can turn an
Speaker 1: everyday injury into a life threatening crisis. It affects mostly
Speaker 1: men and boys. Those who have it are typically born
Speaker 1: with a gene mutation that affects the body's ability to
Speaker 1: produce certain proteins. These proteins are what make normal clotting possible,
Speaker 1: and without them, even something as minor as a bumped
Speaker 1: knee can cause internal bleeding.
Speaker 6: Some bleeding episodes can feel like you broke the bone,
Speaker 6: but it's really just the bleeding filling the joint or
Speaker 6: the bruise in a way that can be extremely painful.
Speaker 1: When Bias was a kid, the way to treat these
Speaker 1: kinds of injuries was to transfusions of ice cold plasma,
Speaker 1: a tea colored component of blood that helps distribute proteins
Speaker 1: and nutrients throughout the body.
Speaker 6: I would sit there for six eight hours with a
Speaker 6: blanket on me and my teeth chattering, waiting for the
Speaker 6: treatment to be over. It really was like an icy
Speaker 6: being dripped into your veins.
Speaker 1: To get his mind off the pain, Bias would watch
Speaker 1: I Love Lucy and read and reread books about monsters,
Speaker 1: memorizing minute details about Dracua and the creature from the
Speaker 1: Black Lagoon. His grandmother would give him tangled balls of
Speaker 1: thread that he would carefully untie like homemade puzzles. Bias
Speaker 1: was in and out of the hospital for treatments all
Speaker 1: the time.
Speaker 6: I knew that hospital better than many homes I lived in.
Speaker 6: I mean, top to bottom. Even my accent Buffalonians have
Speaker 6: a particular accent was altered because I spent so much
Speaker 6: time in the hospital with professionals who aren't necessarily from
Speaker 6: the area.
Speaker 1: Bias tried to make the best of his situation, but
Speaker 1: the more he learned about hemophilia, the more he realized
Speaker 1: how different his outlook was from that of his peers.
Speaker 1: In sixth grade, he got a new science textbook at
Speaker 1: school and he looked up hemophilia in the index.
Speaker 6: And there was a paragraph on hemophilia, and I was like, wow,
Speaker 6: people actually know what it is. And I read that
Speaker 6: paragraph and it said my life expectancy would be twenty
Speaker 6: years old. And I was devastated.
Speaker 1: For long stretches of his young life, this was Valbias's reality,
Speaker 1: visiting the hospital, managing pain, expecting to die young. Then
Speaker 1: in the late sixties, a new treatment was developed that
Speaker 1: revolutionized life for people with hemophilia.
Speaker 7: You're looking at something that will let a hemophiliac live
Speaker 7: and bleed like a normal person.
Speaker 1: The new treatment was known as clotting factor, or just
Speaker 1: Factor for short. It was a powdered concentrate that came
Speaker 1: in a small vial, and, like the icy transfusions val
Speaker 1: Bias had been receiving for years, Factor was made out
Speaker 1: of plasma. The difference was that Factor could be stored
Speaker 1: in an ordinary refrigerator and was easy to self administer.
Speaker 1: That meant people with chemophilia no longer had to rush
Speaker 1: to the hospital every time they had a bleeding episode.
Speaker 8: It is called Factor eight.
Speaker 5: You probably have never heard of it.
Speaker 2: Frequent costly injections of a product made from the plasma
Speaker 2: of blood donors keeps them from bleeding to death.
Speaker 1: Factor was one hundred times more effective at clotting blood
Speaker 1: than raw plasma very quickly. It caused the life expectancy
Speaker 1: of people with chemophilia to shoot up dramatically. To val Bias,
Speaker 1: it was like a miracle. Among other things, it meant
Speaker 1: that he could now go off to college on his own.
Speaker 6: It was a reality that I could actually do. He
Speaker 6: even thought. After I talked to other men with heemophilia,
Speaker 6: many of them didn't feel like they could have a
Speaker 6: family or normal life, and I think that clotting factor
Speaker 6: changed that reality for all of us. It made us
Speaker 6: seek professional careers we didn't think we could have. It
Speaker 6: made us reach for the stars because we no longer
Speaker 6: were tethered to the hospital.
Speaker 1: But factor came with a caveat. A single batch of
Speaker 1: it contained the combined plasma of as many as twenty
Speaker 1: thousand different people, way more than a dozen or so
Speaker 1: it took to make the old treatment. If just one
Speaker 1: of those twenty thousand donors was carrying a blood borne disease,
Speaker 1: the person receiving the treatment could become infected. This kind
Speaker 1: of contamination had long been a risk for people with hemophilia.
Speaker 1: Thal Bias had gotten hepatitis B from a blood transfusion
Speaker 1: when he was in sixth grade. But with clotting factors,
Speaker 1: the risk of contracting a blood borne disease was much
Speaker 1: much higher. For Bias and thousands of others like him,
Speaker 1: Factor was a life changing treatment. It seemed like a
Speaker 1: risk worth taking. I'm leon Neefok from Audible Originals and
Speaker 1: prologue projects. This is fiasco.
Speaker 9: Blood banks and plasma centers may be spreading a new
Speaker 9: and mysterious ailment called AIDS.
Speaker 8: Cases go from two to four to eight.
Speaker 3: We don't really have any proof that nation's blood supply
Speaker 3: is contaminated.
Speaker 10: If there's even one infected unit, it's going to infect
Speaker 10: the whole thing.
Speaker 6: There were enough people dying in the community that in
Speaker 6: your number was going to come up at some point.
Speaker 1: In this episode. AIDS puts America's blood supply in jeopardy,
Speaker 1: but the absence of a consensus around what causes the
Speaker 1: disease makes it impossible to contain the spread. The term
Speaker 1: canary in the coal mine comes from an old method
Speaker 1: of detecting poisonous gases. Miners used to bring caged canaries
Speaker 1: with them into mines, and because gases kill canaries faster
Speaker 1: than they kill humans, the miners knew to get out
Speaker 1: immediately if one of the canaries keeled over. People with
Speaker 1: chemophilia are often referred to as the canaries in the
Speaker 1: coal mine of bloodborne diseases.
Speaker 11: If anybody are going to get a blood born disease first,
Speaker 11: it's going to be patients with hemophilia, because they get
Speaker 11: them all.
Speaker 1: This is doctor Bruce Evatt in nineteen eighty one. He
Speaker 1: was working at the Centers for Disease Control, where he
Speaker 1: served as a point man on the hemophilia community. Evatt
Speaker 1: had joined the CDC in the mid seventies, a strange
Speaker 1: period when the agencies seemed to be losing its relevant.
Speaker 11: The infectious disease community at that point felt that for
Speaker 11: the most part, infectious diseases were conquered. The arrogance was
Speaker 11: that there were no more infectious diseases. We really didn't
Speaker 11: need a CDC anymore.
Speaker 1: But then a new disease appeared on the CDC's radar.
Speaker 1: As you've heard, the disease was initially observed in gay men.
Speaker 1: Then it started showing up in other populations like injecting
Speaker 1: drug users and people from Haiti. For a long time,
Speaker 1: no one could figure out what was making all these
Speaker 1: people sick.
Speaker 12: Investigators have examined the habits of homosexuals for clues. The
Speaker 12: best guess is that some infectious agent is causing it.
Speaker 1: Some scientists feared from the start that the culprit was
Speaker 1: a blood borne virus, but that was just a theory.
Speaker 11: There was no general agreement in the scientific community as
Speaker 11: what this disease was, whether it was even infectious. Okay,
Speaker 11: and there were all kinds of postulations being put on,
Speaker 11: and everybody wanted to win the Nobel Prize by getting
Speaker 11: the correct one out there.
Speaker 12: Researchers are now studying blood and other samples from the
Speaker 12: victims trying to learn what is causing the disease. So
Speaker 12: far they have had no luck.
Speaker 1: This was more or less the situation in January of
Speaker 1: nineteen eighty two when Evitt received an alarming phone call
Speaker 1: from Miami, Florida. The person calling was a doctor who
Speaker 1: had lost a patient to numasistus pneumonia. Unlike so many
Speaker 1: others who had recently died of the same thing, this
Speaker 1: patient was a straight, married man. The reason the doctor
Speaker 1: in Miami thought to call Bruce Evitt was that the
Speaker 1: patient also had hemophilia.
Speaker 11: And he says, I've got a patient I think that
Speaker 11: died from contaminated factor. The patient had all these symptoms,
Speaker 11: and he was not a homosexual, and he died before
Speaker 11: we could make a diagnosis.
Speaker 1: The doctor suspected the source of the infection was clotting factor.
Speaker 1: That put Evit on high alert if more cases of
Speaker 1: pneumacistus were to start showing up in patients with hemophilia.
Speaker 1: The ramifications would be grave for starters, it would bolster
Speaker 1: the theory that the new disease was a blood born virus,
Speaker 1: and it could mean that the country's entire blood supply
Speaker 1: was compromised. Before long, Evatt heard about several more suspected
Speaker 1: cases and.
Speaker 11: Suddenly, bang bang bang, three of them within a short
Speaker 11: period of time. That you could excuse one case of
Speaker 11: hemophilia with this syndrome, but three, and if you got more,
Speaker 11: you know, the odds were going through the roof in
Speaker 11: terms of probability.
Speaker 1: Ev It became convinced that the new disease had to
Speaker 1: be bloodborne. That meant he needed to warn the blood
Speaker 1: industry right away. The blood industry is made up of
Speaker 1: two basic silos. On the one hand, there are nonprofits
Speaker 1: like the Red Cross, which rely on donations. Then there
Speaker 1: are plasma companies that pay people for their blood.
Speaker 7: Through its network of donor centers around the country, the
Speaker 7: Red Cross collects over one half of the nation's hull
Speaker 7: blood supply.
Speaker 1: If you donate to the Red Cross or another nonprofit
Speaker 1: blood bank, you're giving what's called whole blood. Whole blood
Speaker 1: is used for people who are undergoing surgery or who
Speaker 1: have lost a lot of their own blood as a
Speaker 1: result of, say, a car accident.
Speaker 2: Hi, this is Bob, Oh, please pretch now to visit
Speaker 2: your local hospital or community blood bank.
Speaker 1: Unlike the blood banks, the for profit companies in the
Speaker 1: blood industry pay people for their blood, or, more accurately,
Speaker 1: they pay for their plasma. Plasma is the vital ingredient
Speaker 1: in clotting factor, which means people with hemophilia require a
Speaker 1: huge amount of it to live healthy lives. Producing a
Speaker 1: single year's worth of factor for one person can require
Speaker 1: more than a thousand indivi vidual plasma donations. There simply
Speaker 1: aren't enough altruistic people in the world to meet that
Speaker 1: level of demand through donations alone. But paying for plasma
Speaker 1: comes with its own unique risks. It's the poor who
Speaker 1: line up before dawn waiting to sell their plasma raw
Speaker 1: material for the blood company's products.
Speaker 8: If you're paying somebody for their blood, you're going to
Speaker 8: attract people who need the money desperately enough to want
Speaker 8: to give their blood.
Speaker 1: Douglas Starr is the author of Blood, An Epic History
Speaker 1: of Medicine and Commerce.
Speaker 8: Where are they going to find people who are willing
Speaker 8: to sell plasma?
Speaker 11: Well?
Speaker 7: Skid Row Los Angeles and on the city's skid row,
Speaker 7: a corner of that world blood market.
Speaker 8: The poor, the alcoholics, and the drug addicts sell their plasma,
Speaker 8: and that population tends to have higher rates of diseases.
Speaker 1: Throughout the nineteen sixties and seventies, plasma companies opened collection
Speaker 1: centers in marginalized communities across the country. They also took
Speaker 1: their operations into a Matamerica's prisons.
Speaker 9: Prisoners are able to earn a little money to buy
Speaker 9: the nicety, truth based and smacks.
Speaker 6: They buy it with their blood.
Speaker 1: Donna Shaw is a journalist who wrote about this practice
Speaker 1: in her book Blood on Their Hands.
Speaker 10: These commercial blood centers were for profit companies that were
Speaker 10: allowed to operate inside of these state prisons.
Speaker 9: They're paid about eight dollars a leter. They get six
Speaker 9: dollars of the money. The rest goes under the ind
Speaker 9: Maade welfare upon.
Speaker 1: The prevalence of blood born diseases tends to be higher
Speaker 1: than average among people in prison. If the new disease
Speaker 1: really was a blood born virus, that meant a lot
Speaker 1: of the plasma being bought and sold by the plasma
Speaker 1: companies was at high risk for contamination.
Speaker 10: They're not combining one or two or a dozen units
Speaker 10: of plasma. They're combining thousands and thousands of them in
Speaker 10: these huge vats, right, and so if there's even one
Speaker 10: infected unit in that big vat, it's going to infect
Speaker 10: the whole thing.
Speaker 1: Bruce Evett at the CDC was deeply concerned about the
Speaker 1: plasma companies, but he was also worried about nonprofit blood
Speaker 1: banks like the Red Cross. In cities like New York
Speaker 1: and San Francisco, gay men were known for being a
Speaker 1: particularly reliable cohort of blood donors. At Erwin Memorial, the
Speaker 1: largest nonprofit blood bank in San Francisco, they made up
Speaker 1: twenty percent of the donor pool. If the new disease
Speaker 1: was being spread through blood and it was disproportionately showing
Speaker 1: up in gay men, it seemed to evit like a
Speaker 1: recipe for disaster. And because the whole blood collected by
Speaker 1: the nonprofits was used in a wide variety of patients,
Speaker 1: it wasn't just people with hemophilia who were at risk.
Speaker 1: Anyone who went to the hospital and needed a blood
Speaker 1: transfusion could be infected to On July twenty seventh, nineteen
Speaker 1: eighty two, Evitt and a few colleagues from the CDC
Speaker 1: traveled to Washington for an emergency meeting convened by the
Speaker 1: Assistant Secretary of Health. It was attended by leaders for
Speaker 1: the blood industry as well as the gay community and
Speaker 1: the hemophilia community. Representatives from the FDA, which had regulatory
Speaker 1: power over the blood industry, were also there. Ewitt gave
Speaker 1: a presentation aimed at convincing people that the new disease
Speaker 1: was being spread through blood.
Speaker 11: There was a lot of skepticism. It was a new
Speaker 11: idea introduced, okay, that this was a new infectious agent,
Speaker 11: that it was different from all other infectious agents, and
Speaker 11: that it was being transmitted by blood. Well, the first
Speaker 11: time anybody hears that, they're going to be skeptical.
Speaker 1: Eviitt urged the blood industry to start screening out any
Speaker 1: donors who came from groups that appeared to be at
Speaker 1: special risk. That included injecting drug users, gay men, and
Speaker 1: Haitian Americans, a community that was notably not represented at
Speaker 1: the hearing. Evatt's proposal received immediate pushback. Here again is
Speaker 1: journalist Douglas Starr.
Speaker 8: Gay donors happened to be very good donors. They were
Speaker 8: very civic minded, as a group, and by excluding them,
Speaker 8: you're casting a pall over their citizenship, and it wasn't right.
Speaker 8: The other groups they wanted us to exclude also was
Speaker 8: IVY drug users, So gay people were feeling, you're lumping
Speaker 8: us with IVY drug users when we're good citizens. It's
Speaker 8: not right.
Speaker 1: To many, the idea of screening out gay and bisexual
Speaker 1: men from the donor pool seemed like it would reinforce
Speaker 1: homophobic assumptions among the general public that all men who
Speaker 1: had sex with men were infected and therefore dangerous. After
Speaker 1: the meeting in Washington, one gay advocacy group issued a
Speaker 1: statement arguing that screening out gay men as blood donors
Speaker 1: would be reminiscent of misagenation blood laws that divided black
Speaker 1: blood from white.
Speaker 13: A community is eager to have reason on the project,
Speaker 13: not the kind of rhetoric and scapegoating that the proposed
Speaker 13: blood policy seems to indicate.
Speaker 1: Representatives from the blood industry weren't eager to introduce screening
Speaker 1: procedures either. Not only would it be expensive, it would
Speaker 1: also reduce their inventory. Plus there were still only three
Speaker 1: known cases of people with heemophilia coming down with the
Speaker 1: new disease. It seemed totally possible that Bruce Evatt from
Speaker 1: the CDC was overreacting. Perhaps most surprisingly, the leaders of
Speaker 1: the National Humophilia Foundation, the country's largest advocacy group for
Speaker 1: people with chemophilia, were also not inclined to heed Eviitt's warnings.
Speaker 1: Their problem was that if Ebitt was right, it could
Speaker 1: mean giving up the clotting factor that had transformed so
Speaker 1: many patients.
Speaker 11: Line, so when you're talking to the hemophila community, you
Speaker 11: know they don't want to hear this. Science has given
Speaker 11: them a drug that has been a miracle drug for
Speaker 11: these patients, and now you're can tell them it's no good,
Speaker 11: it may be killing them. And it's only on the
Speaker 11: basis that three patients. And so you had to repeat
Speaker 11: it again and again and again and again and again again,
Speaker 11: and each time you begin to get a few more converts.
Speaker 11: But there was a large part of the hemophilic community
Speaker 11: didn't want to hear it.
Speaker 1: Val Bias, whom you heard from at the beginning of
Speaker 1: this episode, says he understands why leaders from the hemophilia
Speaker 1: community were so skeptical at the time.
Speaker 6: I think people make the best decisions they can with
Speaker 6: the information they have, and I think another prevailing piece
Speaker 6: of their experience was they had lived through hemophilia with
Speaker 6: no treatment. They knew what that was like, you know,
Speaker 6: they knew what those life inspects sencies were like, and
Speaker 6: they did not want to return to that. They didn't
Speaker 6: have an alternative for their patients if they told everybody
Speaker 6: to stop treating but to return to that life.
Speaker 1: Before facing resistance on all sides, Bruce Evitt and his
Speaker 1: CDC colleagues felt sure that the crisis was only going
Speaker 1: to get worse. By the fall of nineteen eighty two,
Speaker 1: the CDC had identified four more people with hemophilia who
Speaker 1: had contracted AIDS. That brought the total number of known
Speaker 1: cases to seven.
Speaker 2: Doctors believe they found the first solid evidence this disease
Speaker 2: is spreading to new segments of the population by blood transfusion.
Speaker 1: From Evatt's point of view, either the FDA had to
Speaker 1: tell the blood industry to stop accepting blood and plasma
Speaker 1: from people who were at high risk for AIDS, or
Speaker 1: the blood industry needed to do it voluntarily. Over the
Speaker 1: next several months, Evatt and his colleagues traveled across the country,
Speaker 1: privately urging leaders of plasma companies and blood banks to
Speaker 1: adopt new screening procedures because of budget cuts at the CDC,
Speaker 1: Evitt paid his own way.
Speaker 11: It was really a busy time because I was traveling
Speaker 11: most of the time and then trying to carry on
Speaker 11: the stuff at the office at the same time. Usually
Speaker 11: I was so tired.
Speaker 1: Only one pharmaceutical company, the produced Factor, took Evatt's warnings seriously.
Speaker 1: President of Alpha Therapeutics, Tom Drees said he was knocked
Speaker 1: off his chair by the data suggesting bloodborne transmission. Drease
Speaker 1: agreed to begin screening out high risk donors right away.
Speaker 14: The difference in our screening program started in December of
Speaker 14: eighty two was it was direct questioning. Usually we'd handed
Speaker 14: the donor a sheet, he'd check out the things, but
Speaker 14: this was now looking him in the eye rather delicate
Speaker 14: such way should say are you a male homosexual? Are
Speaker 14: you a drug abuser?
Speaker 1: At first, the heads of other plasma companies were furious
Speaker 1: with Tom Treese's decision, but eventually they followed suit. Evatt
Speaker 1: faced more intense resistance from the nonprofit sector of the
Speaker 1: blood industry. The blood banks, like the Red Cross, which
Speaker 1: relied on donations for their inventory. One of the most
Speaker 1: outspoken critics of donor screening was doctor Joseph Bovee, a
Speaker 1: Yale Medical School professor who led one of the largest
Speaker 1: blood banking associations in the country and chaired the FDA
Speaker 1: committee dedicated to blood safety.
Speaker 3: There's not enough evidence to finger any population or a
Speaker 3: subset of individuals and say this group should not be
Speaker 3: allowed to donate blood.
Speaker 1: To understand where blood bankers like Bovy were coming from,
Speaker 1: it's important to consider how difficult it already was for
Speaker 1: them to find enough donors to satisfy demand of blood
Speaker 1: donation had come during World War II.
Speaker 15: In America, patriotic citizens are giving their blood to save
Speaker 15: the lives of their soldiers and sailors.
Speaker 1: Pretty much ever since, blood banks have been struggling to
Speaker 1: attract as many donors as they needed.
Speaker 7: For the past quarter century, on government request, the Red
Speaker 7: Cross has tried to organize community blood banks with voluntary donors.
Speaker 7: They've managed to collect less than half of these seven
Speaker 7: million pints needed annually.
Speaker 1: Journalist Douglas Starr again, after World.
Speaker 8: War Two, it was very difficult to collect blood. That's
Speaker 8: tied into the decline of factories, the decline of unions,
Speaker 8: the fractionating the American public were just not the collective
Speaker 8: that we used to be, so even in eighty one
Speaker 8: eighty two, blood bankers were having problems getting enough blood,
Speaker 8: so it was always a crisis.
Speaker 1: Making it harder for people to donate blood would inevitably
Speaker 1: reduce the blood banks supply. Additionally, some blood bankers believe
Speaker 1: that making a big deal about AIDS during the donation
Speaker 1: process would create an association between giving blood and contracting
Speaker 1: the disease that in turn would scare away donors who
Speaker 1: weren't even in high risk groups. So Joseph Bovie and
Speaker 1: the blood banks continued to resist Bruce Evitt and his
Speaker 1: CDC colleagues.
Speaker 3: The evidence for this, in my view, is very weak
Speaker 3: and very early. We don't really have any proof yet
Speaker 3: that the nation's blood supply is contaminated.
Speaker 1: If the blood banks were going to jeopardize their already
Speaker 1: limited blood supply, they wanted definitive proof that AIDS was
Speaker 1: being spread through their products. They wanted to see under
Speaker 1: a microscope the infectious agent that was supposedly causing AIDS.
Speaker 1: Even with seven cases of people with hemophilia catching the disease,
Speaker 1: all Evit had was a theory.
Speaker 7: I was worried today that a new and frightening disease
Speaker 7: as being spread by blood transfusions. How doctors are seeing
Speaker 7: it in children.
Speaker 1: In October of nineteen eighty two, new evidence emerged that
Speaker 1: Everett's theory was right. That month, Marcus Conant, the San
Speaker 1: Francisco doctor you heard from in our previous episode, hosted
Speaker 1: one of the first national conferences on AIDS. During the conference,
Speaker 1: one of Conant's colleagues heard a story about a baby
Speaker 1: boy who appeared to have contracted AIDS after getting a
Speaker 1: blood transfusion.
Speaker 16: He had neonatal jaundice, and so they had given him
Speaker 16: a blood transfusion, and following that transfusion, he became ill,
Speaker 16: and he developed what appeared to be AIDS, and his
Speaker 16: only conceivable vector, the only conceivable course of infection, was
Speaker 16: from the transfusion.
Speaker 1: When investigators tracked down the baby's donors, they found that
Speaker 1: one of them was a forty eight year old man
Speaker 1: who had recently died. Based on his medical history, it
Speaker 1: was almost certain that he had died of AIDS and
Speaker 1: that he had passed it up on to the baby boy.
Speaker 2: At San Francisco's Moffett Hospital, doctors are treating a twenty
Speaker 2: month old boy, possibly the youngest victim ever of AIDE syndrome.
Speaker 16: I mean that was kind of the final a nail
Speaker 16: in the coffin, if you will. There had been other
Speaker 16: suggestions that this thing was a bloodborne disease, but that
Speaker 16: baby's case clinched it.
Speaker 1: When worried about the baby got back to Bruce Evitt
Speaker 1: at the CDC, he thought the conversation around the blood
Speaker 1: supply was now going to change.
Speaker 11: That was the case we thought would convince him. We
Speaker 11: thought that'd be the slam doc. And so we called
Speaker 11: this meeting and we thought this would just be pro former.
Speaker 11: Thought he wouldn't be any any argument. You know, there
Speaker 11: it is light out.
Speaker 1: On January fourth, nineteen eighty three, Evitt and his CDC
Speaker 1: colleagues brought together the same set of stakeholders who had
Speaker 1: attended that ill fated meeting in Washington five months earlier.
Speaker 1: Once again, a group of blood industry leaders gathered alongside
Speaker 1: gay advocacy groups and represents of the hemophilia community.
Speaker 4: These are all people who are interested in and working
Speaker 4: on the problem of AIDS acquired immune deficiency syndrome. It
Speaker 4: is a disease.
Speaker 1: This time the meeting took place on the CDC's home
Speaker 1: turf in Atlanta, Georgia, and it attracted more than one
Speaker 1: hundred journalists and other observers.
Speaker 4: When doctors and scientists are finished here, they still will
Speaker 4: not know the cause of AIDS, but they are hoping
Speaker 4: to come away from this meeting with one thing, and
Speaker 4: that is a list of eventive measures once they hope
Speaker 4: to target to the high risk groups.
Speaker 1: The CDC's presentations began at eight thirty in the morning.
Speaker 1: Evitt carefully laid out the latest evidence indicating that AIDS
Speaker 1: was bloodborne. In addition to the baby boy, there were
Speaker 1: now eight people with heemophilia who were known to have
Speaker 1: developed AIDS. Then, one of Evatt's colleagues proposed a new
Speaker 1: idea for screening out high risk donors. Instead of asking
Speaker 1: people if they were gay or if they used injecting drugs,
Speaker 1: the plasma companies and the blood could conduct a blood
Speaker 1: test not for AIDS, since an AIDS test didn't exist,
Speaker 1: but for another blood borne disease, hepatitis B. Douglas Starr explains, there.
Speaker 8: Was this thought, you know a lot of people with
Speaker 8: AIDS have hepatitis B. What if we do the hepatitis
Speaker 8: test as sort of a surrogate for the AIDS test.
Speaker 8: So the idea is, could we test donors for the
Speaker 8: hepatitis core and rule them out even though we don't
Speaker 8: know what causes AIDS.
Speaker 1: It wouldn't be a perfect test, but the correlation between
Speaker 1: people with AIDS and people carrying antibodies for hepatitis B
Speaker 1: was very high nearly ninety percent. Until a real AIDS
Speaker 1: test could be developed, it seemed like a strong interim solution.
Speaker 1: The gay rights advocates of the meeting in Atlanta liked
Speaker 1: the idea of testing the blood itself. It was better
Speaker 1: than trying to ban entire groups of people from donating,
Speaker 1: but the blood bankers rejected it, saying it would be
Speaker 1: too expensive. One of them amated the testing every donor
Speaker 1: for hepatitis B would cost the country's beleagued blood banks
Speaker 1: one hundred million dollars a year.
Speaker 11: Well, the blood bankers arguments were that here we were
Speaker 11: asking them to disrupt their whole blood bank screening on
Speaker 11: the basis of eight patients, and what everybody didn't recognize
Speaker 11: at the time is how prevalent this disease was already
Speaker 11: in the population.
Speaker 1: To the blood bankers, the chance of getting aid through
Speaker 1: the blood supply looked tiny, and preserving access to a
Speaker 1: life saving product outweighed the risk. But to Ebitt, it
Speaker 1: was clear that the eight patients were only the tip
Speaker 1: of the iceberg, a terrifying proxy for all the as
Speaker 1: yet undiagnosed cases out there.
Speaker 8: When he saw cases go from two to four to eight,
Speaker 8: that expresses a doubling rate. Epidemiologists in CDC don't just
Speaker 8: look at raw numbers. They look at what is the
Speaker 8: curve doing, and this curve was very steep. Whereas blood
Speaker 8: bankers think of the word bank, they act like bankers.
Speaker 8: They think of things like inventory and supply. So to
Speaker 8: them and to people in the plasma industry who think
Speaker 8: like CEOs, they're thinking eight cases is a concern, but
Speaker 8: out of ten million transfusions, it's not that significant. Let's
Speaker 8: keep an eye on it, but let's not ring the
Speaker 8: alarm bell.
Speaker 1: As the meeting in Atlanta dragged on, things got increasingly tense.
Speaker 1: At one point, the president of a blood bank warned
Speaker 1: Evitt not to overstate the facts. Eviitt felt he was
Speaker 1: being called a bad scientist to his face.
Speaker 11: That just made me absolutely furious. After all, we went
Speaker 11: in and expecting to get well at least something. We
Speaker 11: didn't get anything. I really got furious. I was very
Speaker 11: difficult to hold my temper, but I never doubted that
Speaker 11: we weren't right.
Speaker 1: Eviitt realized that yet another meeting was going to end
Speaker 1: in a stalemate. Ben one of his CDC colleagues, an
Speaker 1: epidemiologist named Don Francis, lost his cool.
Speaker 8: He famously banked his fist on the table and hollered,
Speaker 8: how many people have to die? Is three enough? Six ' ten?
Speaker 8: Is one hundred enough? Just give us the number so
Speaker 8: we could set the threshold. And years later I connected
Speaker 8: with Francis and he was still furious. He said, I
Speaker 8: just couldn't believe these guys. It was like having a
Speaker 8: bend in the train track and sitting there and you
Speaker 8: hear the whistles and the singles are blinking, and the
Speaker 8: tracks are beginning to shake, and they're saying there's no
Speaker 8: train coming.
Speaker 1: After the meeting, a Red Cross official wrote an internal
Speaker 1: memo questioning not just Evatt and his colleagues, but the
Speaker 1: entire CDC as an institution. It has long been noted.
Speaker 1: The official wrote that CDC increasingly needs a major epidemic
Speaker 1: to justify its existence. The memo suggested the CDC had
Speaker 1: selfishly exaggerated the threat of AIDS in part so he
Speaker 1: could get funding for a new fifteen million dollar virology lab.
Speaker 1: When it came to AIDS in the blood supply, the
Speaker 1: Red Cross official concluded, we cannot depend on the CDC
Speaker 1: to provide scientific, objective, unbiased leadership. Nearly three months after
Speaker 1: the meeting in Atlanta, the FDA finally issued guidelines for
Speaker 1: the blood industry, but to Evitt they looked tepid, a
Speaker 1: half step that fell far short of what he and
Speaker 1: his colleagues have been calling for. Instead of mandating surrogate
Speaker 1: tests to screen for hepatitis B or even questionnaires designed
Speaker 1: to screen out high risk donors, the blood industry was
Speaker 1: merely required to present educational materials about AIDS and ask
Speaker 1: those in high risk groups not to give blood or plasma.
Speaker 2: There is a new sign of the times, an appeal
Speaker 2: that three diverse groups of potential donors not donate blood
Speaker 2: or blood products.
Speaker 1: Some blood banks did experiment with hepatitis B tests and
Speaker 1: tougher questioning of donors, but for the most part, they
Speaker 1: did little to prevent high risk groups from giving blood.
Speaker 1: In June of nineteen eighty three, nearly six months after
Speaker 1: the meeting in Atlanta, Blood Bank spokesman and FDA advisor
Speaker 1: Joseph Bovie insisted once again that there was just too
Speaker 1: much uncertainty to make any sudden moves.
Speaker 3: If anyone has gotten AIDS from these transfusions, it's a
Speaker 3: mere handful of people. Of course, in medicine, you can
Speaker 3: never be sure of anything.
Speaker 14: Really, are you.
Speaker 13: Very concerned that if this trend continues there will be
Speaker 13: significantly more risk to the blood supply.
Speaker 3: I have trouble seeing a trend as yet.
Speaker 1: The four profit companies that produced clotting factor also seemed
Speaker 1: to want to do as little as they could get
Speaker 1: away with. Instead of testing donors for hepatitis B, most
Speaker 1: commercial plasma centers continue to rely on questionnaires. This had
Speaker 1: the effect of furthering stigma against gay men, drug users,
Speaker 1: and Haitian immigrants, while also holding individual donors responsible for
Speaker 1: protecting the blood supply. Remember, at this point, there was
Speaker 1: still no AIDS test available, and therefore no way to
Speaker 1: know if you had the disease unless you were showing symptoms.
Speaker 1: More than once people who sold plasma were later discovered
Speaker 1: to have AIDS, leading to recalls of entire batches of factor.
Speaker 12: Whitfield donated here about fifty times last year until he
Speaker 12: died of AIDS. When I learned of Whitfield's death, Cutter
Speaker 12: Laboratory is recalled sixty four thousand vials which may contain
Speaker 12: Whitfield's blood.
Speaker 3: If further of these kinds of incidents occurred, there is
Speaker 3: some risk that this product, which is necessary for the
Speaker 3: good health of the hemophiliacs, might become unavailable.
Speaker 1: In spite of these recalls, the factor companies still did
Speaker 1: not change their practices. Meanwhile, the National Hemophilia Foundation continued
Speaker 1: to encourage the use of clotting factor. One top medical
Speaker 1: advisor to the NaHF said that his position was business
Speaker 1: as usual. There is no evidence, he said, that treatment
Speaker 1: per se is the cause of AIDS.
Speaker 2: In New York. The National Hemophilia Foundation is worried that
Speaker 2: patients may forego their normal treatment.
Speaker 17: It is extremely important that hemophiliacs continue to use the
Speaker 17: much needed blood clotting factor products because the risk of
Speaker 17: not using it is greater than the risk of AIDS itself.
Speaker 1: Donna Shaw, the author of Blood on Their Hands, says
Speaker 1: it was no coincidence that the NaHF received a lot
Speaker 1: of its funding from the factor companies.
Speaker 10: A lot of patient advocacy groups are in that position
Speaker 10: where they're accepting money from the pharmaceutical industry in order
Speaker 10: to advocate for their patients, and the NAHEF was in
Speaker 10: bed with pharma a little more than most, I think.
Speaker 1: Shaw says that leaders in the hemophilia community took their
Speaker 1: cues from companies making blood product and because of that,
Speaker 1: they saw the situation through rose colored glasses.
Speaker 10: They gave them the old one in a million speech. Right, Oh,
Speaker 10: only gay men are getting aids. One in a million hemophiliacs.
Speaker 10: Don't worry. Don't worry. They diluted themselves into believing this.
Speaker 10: They wanted to do the right thing, but you know,
Speaker 10: they bought the literally the company line.
Speaker 1: Val Bias, who eventually became the head of the National
Speaker 1: Hemophilia Foundation, says it wasn't necessarily that simple. While the
Speaker 1: NHF certainly had some agenda setting power, Bias says that
Speaker 1: it was the local chapters of the organization that were
Speaker 1: the main points of contact for patients and their families.
Speaker 6: Individual chapters control the information that's given out to their patients,
Speaker 6: and I know in the Bay Area, the mom who
Speaker 6: ran the chapter was just like, I wasn't going to
Speaker 6: send out a letter saying to stop treating because I
Speaker 6: knew what treatment was like before we didn't have clotting factor.
Speaker 6: And maybe that was selfish, inappropriate, uneducated, whatever you want
Speaker 6: to call it, but you know that is an emotionally
Speaker 6: affected decision because you're living with the disease.
Speaker 9: This is NBC Nightly News, reported by Tom Brokaw.
Speaker 18: Good Evening.
Speaker 15: Researchers now believe that they have made a monumental breakthrough
Speaker 15: in the fight against age.
Speaker 1: On April twenty third, nineteen eighty four, explosive news came
Speaker 1: out of Washington that finally broke the stalemate between the
Speaker 1: blood industry and its critics.
Speaker 15: At the CDC, US Government of Scientist announced in Washington
Speaker 15: today they have isolated a virus they believe causes age.
Speaker 1: The virus would come to be known as HIV. The
Speaker 1: fact that scientists had identified it was hailed as a
Speaker 1: major step forward.
Speaker 15: And the French have made a similar breakthrough in our
Speaker 15: age research. But this breakthrough makes it possible to identify
Speaker 15: AIDS victims and carriers.
Speaker 1: Here finally was the definitive evidence. The blood industry had
Speaker 1: been demanding the infectious agent visible under a microscope, and
Speaker 1: to be clear, this was not just a big deal
Speaker 1: in the context of the blood supply debate. The identification
Speaker 1: of HIV confirmed once and for all that AIDS was
Speaker 1: spread through blood and other bodily fluids. It was also
Speaker 1: an important step towards developing a blood test, one that
Speaker 1: would allow doctors to detect signs of the disease much
Speaker 1: earlier in people who had not yet developed aid symptoms.
Speaker 12: This means a.
Speaker 19: Blood test can be developed within a few months to
Speaker 19: detect AIDS. First, this could identify victims earlier, and secondly,
Speaker 19: this could prevent the spread of AIDS by testing blood
Speaker 19: and blood banks or donors.
Speaker 1: So it ended up taking another year before the AIDE
Speaker 1: test became available, but by the summer of nineteen eighty five,
Speaker 1: all blood banks and commercial plasma centers were using the
Speaker 1: test to screen donations. Somehow, that wasn't the end of
Speaker 1: the crisis. Astonishingly, when the FDA required the AIDS test
Speaker 1: for all new blood and plasma donations, it did not
Speaker 1: require all existing units of blood and plasma products in
Speaker 1: storage to be tested. Here again is Douglas Star.
Speaker 8: There were still tons of vials of factory in the
Speaker 8: pipeline and in the refrigerators of people with hemophilia ready
Speaker 8: to be used. There were millions of units of blood,
Speaker 8: plasma and clotting factory collected in the old way that
Speaker 8: was waiting to be used all over the country. So
Speaker 8: I compare it to trying to make a U turn
Speaker 8: with a titanic.
Speaker 1: At least one American company continued selling those untested blood
Speaker 1: products to other countries, resulting in new infections around the world. Meanwhile,
Speaker 1: the FDA instituted a new policy. Despite the availability of
Speaker 1: the new HIV test, there would now be a donation
Speaker 1: ban on recent immigrants from Haiti, as well as men
Speaker 1: who had sex with men.
Speaker 5: The Food and Drug Administration has recommended that any man
Speaker 5: who has had sex with another man since nineteen seventy
Speaker 5: seven not donate blood.
Speaker 1: That ban remained unchanged until twenty fifteen, and it still
Speaker 1: exists in a modified form today. We now know that
Speaker 1: thirty five thousand Americans were infected with HIV through blood
Speaker 1: and blood products. Among them were nearly ten thousand people
Speaker 1: with hemophilia, more than half of their entire population. In
Speaker 1: the United States. Within the community, it is sometimes referred
Speaker 1: to as the hemophilia Holocaust.
Speaker 6: I'd always suspected there were enough people dying in the
Speaker 6: community in New York number was going to come up
Speaker 6: at some point.
Speaker 1: Val Bias ended up moving to San Francisco and working
Speaker 1: at a camp for kids with hemophilia. Throughout the eighties,
Speaker 1: his campers and counselors were dying of AIDS, and Bias
Speaker 1: became involved with a support group for friends and family.
Speaker 6: You know, it became a real solemn, emotional thing to
Speaker 6: attend those meetings, because as those support groups grew, it
Speaker 6: was first one person, and then three people, and then
Speaker 6: five people, and then ten people. And the kids were
Speaker 6: getting sick too, seven eight nine year old kids who
Speaker 6: were coming down with HIV and they were not surviving.
Speaker 1: During this same period, there were thousands of gay men
Speaker 1: in San Francisco who were also dying of AIDS. As
Speaker 1: the crisis tore through both communities, they came together.
Speaker 6: And as we began to look for answers. That's when
Speaker 6: we became seriously involved with the gay community. They were
Speaker 6: the only ones that had literature and information about what
Speaker 6: this was, how it.
Speaker 1: Progressed Bias went on to be a leading spokesman for
Speaker 1: the hemophilia community, and in two thousand and eight he
Speaker 1: became the first black CEO of the National Hemophilia Foundation.
Speaker 1: In that post, Bias worked to reform an organization that
Speaker 1: some twenty five years earlier had repeatedly encouraged its members
Speaker 1: to take a deadly product. Bias approached the task with
Speaker 1: the understanding of a person who himself suffered from hemophilia
Speaker 1: and who understood the trade offs.
Speaker 6: Intuitively, although the Foundation could have made different decisions, they
Speaker 6: were not the same kind of experts that you had
Speaker 6: on when the CDC and the FDA. They were individuals
Speaker 6: with hemophilia, and they were parents of children with humophilia,
Speaker 6: and they did not, in my opinion, gain anything from
Speaker 6: the decisions that they made. In fact, most of them
Speaker 6: either died themselves or their children died. And you know,
Speaker 6: I always feel for those who would paint them as
Speaker 6: villains when they were also the victims.
Speaker 1: It was back in nineteen eighty eight that Bias found
Speaker 1: out that he had at some point contracted HIV from factor.
Speaker 1: He had also unwittingly passed it along to his wife Katie.
Speaker 6: Within a few months, she had a first bout with
Speaker 6: pneumaicistis pneumonia. A few months later, she had another one
Speaker 6: now and her health continued to deteriorate over the next
Speaker 6: few years, and it was hard to watch her lose
Speaker 6: the ability to do things. You know, she was a
Speaker 6: great lover of movies, you know, Oscar night was our
Speaker 6: favorite night of the year, and avid reader of books,
Speaker 6: and it got to the point where she'd get to
Speaker 6: the book and she couldn't remember the beginning. She lost
Speaker 6: interest in being able to sit through a whole movie.
Speaker 6: And you know, I just I cared for her, you know,
Speaker 6: I did everything I could to make her comfortable and
Speaker 6: treat her. And he you know, so she felt a
Speaker 6: part of things.
Speaker 1: When he was a kid, bias his family, doctors, nurses,
Speaker 1: and friends made his time in the hospital more bearable.
Speaker 1: Years later, he tried to do the same for his wife.
Speaker 6: And when she went into the hospital for that last time,
Speaker 6: she lost her ability to speak while she was in
Speaker 6: the hospital, so she could only sort of smile, and
Speaker 6: you know, you could see the recognition in her eyes
Speaker 6: when all of the friends came together and we sat
Speaker 6: in that room and we just told stories about the
Speaker 6: good times we had had his friends, and the doctor
Speaker 6: called me out of the room one afternoon. You got
Speaker 6: to make these people go home. Your wife is ready
Speaker 6: to go, and she can't go because you're all here
Speaker 6: every day. So I sent everybody home, and you know,
Speaker 6: within a few hours, I got into bed with her
Speaker 6: and she passed quietly, you know, peacefully. And it's all
Speaker 6: very sad.
Speaker 18: So I can't explain this, something deep and sadly.
Speaker 1: In our next episode, a movie star helps awaken the
Speaker 1: country to the AIDS crisis and convinces the president to
Speaker 1: pay attention.
Speaker 5: President Reagan said today that Rock Hudson would always be
Speaker 5: remembered for his humanity, and on hearing of his death,
Speaker 5: the House of Representatives agreed to double the amount of
Speaker 5: AIDS funds for research next year.
Speaker 1: Fiasco is presented by Audible Originals and Prologue Projects. This
Speaker 1: episode is dedicated to the memory of bow Bias, who
Speaker 1: died in December of twenty twenty one, about six months
Speaker 1: after we interviewed him. Fiasco is produced by Andrew Parsons,
Speaker 1: Sam Grahm Felsen, Madeline kaplan Ula Kalpa, and me Leon Napock.
Speaker 1: Our researcher is Francis Carr. Editorial support from Jessica Miller
Speaker 1: and Miller waswas archival research by Michelle Sullivan. The vice
Speaker 1: president of Audible Studios is Mike Charzick. The editor in
Speaker 1: chief for Audible Originals is David Blum. This season's music
Speaker 1: is composed by Edith Mudge. Additional music by Nick Sylvester
Speaker 1: of God Mode, Joel Saint, Julian and Dan English, Noah
Speaker 1: Hect and Joe Valley. Our theme song is by Spatial Relations.
Speaker 1: Our credits song this week is Blood in My Veins
Speaker 1: by Elka Robatai. Thanks to the Vanderbilt Television Archive and
Speaker 1: ABC News source music licensing courtesy of Anthony Roman. Audio
Speaker 1: mixed by Erica Wong with additional support from Selina Urabe.
Speaker 1: Our artwork is designed by Teddy Blanks at Chips and y.
Speaker 1: Thanks to Peter Yazzi, and thanks to you for listening.
Speaker 1: See you next week.