June 9, 2023 • 47 mins
AIDS spreads through the country's blood supply, endangering people with hemophilia and leading to a breakthrough about the cause of the disease.
You can find a list of books, articles, and documentaries we used in our research at bit.ly/fiascopod
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
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.
(00:20):
In the first season, my co host Ril Pardess 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 the 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
(00:41):
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 dot com slash Backfired and start a free trial
that's audible dot com slash backfired. Fiasco is intended for
mature audiences. For a list of books, articles and documentaries
(01:03):
we used in our research. Follow the link in the
show notes. Previously on fiasco.
Speaker 2 (01:13):
It's mysterious, it's deadly, and it's baffling medical science.
Speaker 3 (01:18):
Federal health officials consider it an epidemic, yet you rarely
hear a thing about it.
Speaker 4 (01:22):
We had no other resources but ourselves. I thought, well,
my goodness, we're all dead.
Speaker 5 (01:26):
It's a disease first detected in the gay community that
has now spread beyond that.
Speaker 1 (01:35):
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.
Speaker 6 (01:54):
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
(02:15):
away from it.
Speaker 1 (02:18):
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
(02:40):
knee can cause internal bleeding.
Speaker 6 (02:43):
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.
Speaker 1 (02:56):
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.
Speaker 6 (03:08):
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.
Speaker 1 (03:27):
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
(03:48):
the time.
Speaker 6 (03:49):
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.
Speaker 1 (04:07):
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.
Speaker 6 (04:23):
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.
Speaker 1 (04:37):
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.
Speaker 7 (04:55):
You're looking at something that will let a hemophiliac live
and bleed like a normal person.
Speaker 1 (05:01):
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.
(05:23):
That meant people with chemophilia no longer had to rush
to the hospital every time they had a bleeding episode.
Speaker 8 (05:29):
It is called Factor eight.
Speaker 5 (05:31):
You probably have never heard of it.
Speaker 2 (05:32):
Frequent costly injections of a product made from the plasma
of blood donors keeps them from bleeding to death.
Speaker 1 (05:39):
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.
Speaker 6 (05:56):
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
(06:18):
made us reach for the stars because we no longer
were tethered to the hospital.
Speaker 1 (06:27):
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
(06:49):
of contamination had long been a risk for people with hemophilia.
Thal Bias had gotten hepatitis B from a blood transfusion
when he was in sixth grade. But with clotting factors,
the risk of contracting a blood borne disease was much
much higher. For Bias and thousands of others like him,
(07:10):
Factor was a life changing treatment. It seemed like a
risk worth taking. I'm leon Neefok from Audible Originals and
prologue projects. This is fiasco.
Speaker 9 (07:26):
Blood banks and plasma centers may be spreading a new
and mysterious ailment called AIDS.
Speaker 8 (07:32):
Cases go from two to four to eight.
Speaker 3 (07:34):
We don't really have any proof that nation's blood supply
is contaminated.
Speaker 10 (07:38):
If there's even one infected unit, it's going to infect
the whole thing.
Speaker 6 (07:43):
There were enough people dying in the community that in
your number was going to come up at some point.
Speaker 1 (07:49):
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
(08:11):
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 keeled over. People with
chemophilia are often referred to as the canaries in the
(08:33):
coal mine of bloodborne diseases.
Speaker 11 (08:36):
If anybody are going to get a blood born disease first,
it's going to be patients with hemophilia, because they get
them all.
Speaker 1 (08:44):
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.
Speaker 11 (09:00):
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.
Speaker 1 (09:14):
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.
Speaker 12 (09:34):
Investigators have examined the habits of homosexuals for clues. The
best guess is that some infectious agent is causing it.
Speaker 1 (09:41):
Some scientists feared from the start that the culprit was
a blood borne virus, but that was just a theory.
Speaker 11 (09:47):
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.
Speaker 12 (10:05):
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.
Speaker 1 (10:13):
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
(10:36):
in Miami thought to call Bruce Evitt was that the
patient also had hemophilia.
Speaker 11 (10:41):
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.
Speaker 1 (10:56):
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
(11:18):
was compromised. Before long, Evatt heard about several more suspected
cases and.
Speaker 11 (11:24):
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.
Speaker 1 (11:42):
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
(12:03):
like the Red Cross, which rely on donations. Then there
are plasma companies that pay people for their blood.
Speaker 7 (12:10):
Through its network of donor centers around the country, the
Red Cross collects over one half of the nation's hull
blood supply.
Speaker 1 (12:17):
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.
Speaker 2 (12:31):
Hi, this is Bob, Oh, please pretch now to visit
your local hospital or community blood bank.
Speaker 1 (12:36):
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
(12:58):
more than a thousand indivi vidual 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.
Speaker 8 (13:18):
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.
Speaker 1 (13:25):
Douglas Starr is the author of Blood, An Epic History
of Medicine and Commerce.
Speaker 8 (13:31):
Where are they going to find people who are willing
to sell plasma?
Speaker 11 (13:35):
Well?
Speaker 7 (13:35):
Skid Row Los Angeles and on the city's skid row,
a corner of that world blood market.
Speaker 8 (13:41):
The poor, the alcoholics, and the drug addicts sell their plasma,
and that population tends to have higher rates of diseases.
Speaker 1 (13:49):
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.
Speaker 9 (14:01):
Prisoners are able to earn a little money to buy
the nicety, truth based and smacks.
Speaker 6 (14:06):
They buy it with their blood.
Speaker 1 (14:08):
Donna Shaw is a journalist who wrote about this practice
in her book Blood on Their Hands.
Speaker 10 (14:13):
These commercial blood centers were for profit companies that were
allowed to operate inside of these state prisons.
Speaker 9 (14:22):
They're paid about eight dollars a leter. They get six
dollars of the money. The rest goes under the ind
Maade welfare upon.
Speaker 1 (14:28):
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.
Speaker 10 (14:43):
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.
Speaker 1 (15:11):
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
(15:32):
twenty 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 evit 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.
(15:55):
Anyone who went to the hospital and needed a blood
transfusion could be infected to On July twenty seventh, nineteen
eighty two, Evitt 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 for
(16:17):
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. Ewitt gave
a presentation aimed at convincing people that the new disease
was being spread through blood.
Speaker 11 (16:34):
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.
Speaker 1 (16:51):
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.
Speaker 8 (17:12):
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.
Speaker 1 (17:33):
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
(17:54):
would be reminiscent of misagenation blood laws that divided black
blood from white.
Speaker 13 (18:00):
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.
Speaker 1 (18:20):
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
the CDC was overreacting. Perhaps most surprisingly, the leaders of
(18:43):
the National Humophilia Foundation, the country's largest advocacy group for
people with chemophilia, were also not inclined to heed Eviitt's warnings.
Their problem was that if Ebitt was right, it could
mean giving up the clotting factor that had transformed so
many patients.
Speaker 11 (18:59):
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
(19:21):
it again and again and again and again and again again,
and each time you begin to get a few more converts.
But there was a large part of the hemophilic community
didn't want to hear it.
Speaker 1 (19:34):
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.
Speaker 6 (19:43):
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
(20:04):
have an alternative for their patients if they told everybody
to stop treating but to return to that life.
Speaker 1 (20:10):
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
(20:34):
had contracted AIDS. That brought the total number of known
cases to seven.
Speaker 2 (20:39):
Doctors believe they found the first solid evidence this disease
is spreading to new segments of the population by blood transfusion.
Speaker 1 (20:46):
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
(21:07):
adopt new screening procedures because of budget cuts at the CDC,
Evitt paid his own way.
Speaker 11 (21:14):
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.
Speaker 1 (21:29):
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.
Speaker 14 (21:46):
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?
Speaker 1 (22:04):
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
relied on donations for their inventory. One of the most
outspoken critics of donor screening was doctor Joseph Bovee, a
(22:26):
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.
Speaker 3 (22:36):
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.
Speaker 1 (22:46):
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.
Speaker 15 (23:03):
In America, patriotic citizens are giving their blood to save
the lives of their soldiers and sailors.
Speaker 1 (23:10):
Pretty much ever since, blood banks have been struggling to
attract as many donors as they needed.
Speaker 7 (23:15):
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.
Speaker 1 (23:26):
Journalist Douglas Starr again, after World.
Speaker 8 (23:29):
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.
Speaker 1 (23:48):
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
(24:11):
the blood banks continued to resist Bruce Evitt and his
CDC colleagues.
Speaker 3 (24:15):
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.
Speaker 1 (24:26):
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.
Speaker 7 (24:54):
I was worried today that a new and frightening disease
as being spread by blood transfusions. How doctors are seeing
it in children.
Speaker 1 (25:02):
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
(25:24):
blood transfusion.
Speaker 16 (25:26):
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.
Speaker 1 (25:46):
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.
Speaker 2 (26:01):
At San Francisco's Moffett Hospital, doctors are treating a twenty
month old boy, possibly the youngest victim ever of AIDE syndrome.
Speaker 16 (26:09):
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.
Speaker 1 (26:20):
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.
Speaker 11 (26:28):
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.
Speaker 1 (26:42):
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.
Speaker 4 (27:02):
These are all people who are interested in and working
on the problem of AIDS acquired immune deficiency syndrome. It
is a disease.
Speaker 1 (27:10):
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.
Speaker 4 (27:19):
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.
Speaker 1 (27:32):
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
idea for screening out high risk donors. Instead of asking
(27:55):
people if they were gay or if they used injecting drugs,
the plasma companies and the blood could conduct a blood
test not for AIDS, since an AIDS test didn't exist,
but for another blood borne disease, hepatitis B. Douglas Starr explains, there.
Speaker 8 (28:10):
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.
Speaker 1 (28:27):
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
(28:48):
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 amated the testing every donor
for hepatitis B would cost the country's beleagued blood banks
one hundred million dollars a year.
Speaker 11 (29:07):
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.
Speaker 1 (29:25):
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.
Speaker 8 (29:46):
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
(30:08):
them and to people in the plasma industry who think
like CEOs, they're thinking eight cases is a concern, but
out of ten million transfusions, it's not that significant. Let's
keep an eye on it, but let's not ring the
alarm bell.
Speaker 1 (30:27):
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.
Speaker 11 (30:41):
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.
Speaker 1 (30:57):
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.
Speaker 8 (31:08):
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
just couldn't believe these guys. It was like having a
(31:28):
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.
Speaker 1 (31:38):
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
(32:01):
could get funding for a new fifteen million dollar virology lab.
When it came to AIDS in the blood supply, the
Red Cross official concluded, we cannot depend on the CDC
to provide scientific, objective, unbiased leadership. Nearly three months after
(32:22):
the meeting in Atlanta, the FDA finally issued guidelines for
the blood industry, but to Evitt 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
(32:44):
merely required to present educational materials about AIDS and ask
those in high risk groups not to give blood or plasma.
Speaker 2 (32:53):
There is a new sign of the times, an appeal
that three diverse groups of potential donors not donate blood
or blood products.
Speaker 1 (33:02):
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
(33:23):
much uncertainty to make any sudden moves.
Speaker 3 (33:26):
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.
Speaker 14 (33:34):
Really, are you.
Speaker 13 (33:35):
Very concerned that if this trend continues there will be
significantly more risk to the blood supply.
Speaker 3 (33:41):
I have trouble seeing a trend as yet.
Speaker 1 (33:47):
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
(34:10):
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.
Speaker 12 (34:29):
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.
Speaker 3 (34:41):
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.
Speaker 1 (34:51):
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.
Speaker 2 (35:12):
In New York. The National Hemophilia Foundation is worried that
patients may forego their normal treatment.
Speaker 17 (35:18):
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.
Speaker 1 (35:30):
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.
Speaker 10 (35:39):
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.
Speaker 1 (35:55):
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.
Speaker 10 (36:05):
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.
Speaker 1 (36:27):
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.
Speaker 6 (36:45):
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.
(37:06):
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.
Speaker 9 (37:28):
This is NBC Nightly News, reported by Tom Brokaw.
Speaker 18 (37:33):
Good Evening.
Speaker 15 (37:34):
Researchers now believe that they have made a monumental breakthrough
in the fight against age.
Speaker 1 (37:39):
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.
Speaker 15 (37:48):
At the CDC, US Government of Scientist announced in Washington
today they have isolated a virus they believe causes age.
Speaker 1 (37:56):
The virus would come to be known as HIV. The
fact that scientists had identified it was hailed as a
major step forward.
Speaker 15 (38:04):
And the French have made a similar breakthrough in our
age research. But this breakthrough makes it possible to identify
AIDS victims and carriers.
Speaker 1 (38:12):
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
(38:34):
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 aid symptoms.
Speaker 12 (38:45):
This means a.
Speaker 19 (38:45):
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.
Speaker 1 (38:57):
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
(39:18):
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.
Speaker 8 (39:29):
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.
Speaker 1 (39:51):
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
(40:13):
who had sex with men.
Speaker 5 (40:14):
The Food and Drug Administration has recommended that any man
who has had sex with another man since nineteen seventy
seven not donate blood.
Speaker 1 (40:22):
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
(40:43):
the United States. Within the community, it is sometimes referred
to as the hemophilia Holocaust.
Speaker 6 (40:56):
I'd always suspected there were enough people dying in the
community in New York number was going to come up
at some point.
Speaker 1 (41:02):
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.
Speaker 6 (41:16):
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
(41:37):
were coming down with HIV and they were not surviving.
Speaker 1 (41:41):
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.
Speaker 6 (41:52):
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.
Speaker 1 (42:04):
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
(42:26):
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.
Speaker 6 (42:36):
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
(43:00):
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.
Speaker 1 (43:17):
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.
Speaker 6 (43:29):
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
(43:51):
favorite night of the year, and avid reader of books,
and it got to the point where she'd get to
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
(44:14):
treat her. And he you know, so she felt a
part of things.
Speaker 1 (44:20):
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.
Speaker 6 (44:31):
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
(44:52):
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
every day. So I sent everybody home, and you know,
(45:13):
within a few hours, I got into bed with her
and she passed quietly, you know, peacefully. And it's all
very sad.
Speaker 18 (45:25):
So I can't explain this, something deep and sadly.
Speaker 1 (45:55):
In our next episode, a movie star helps awaken the
country to the AIDS crisis and convinces the president to
pay attention.
Speaker 5 (46:02):
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.
Speaker 1 (46:15):
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.
(46:36):
Our researcher is Francis Carr. Editorial support from Jessica Miller
and Miller waswas archival research by Michelle Sullivan. The vice
president of Audible Studios is Mike Charzick. The editor in
chief for Audible Originals is David Blum. This season's music
is composed by Edith Mudge. Additional music by Nick Sylvester
(46:57):
of God Mode, Joel Saint, Julian and Dan English, Noah
Hect and Joe Valley. Our theme song is by Spatial Relations.
Our credits song this week is Blood in My Veins
by Elka Robatai. Thanks to the Vanderbilt Television Archive and
ABC News source music licensing courtesy of Anthony Roman. Audio
(47:18):
mixed by Erica Wong with additional support from Selina Urabe.
Our artwork is designed by Teddy Blanks at Chips and y.
Thanks to Peter Yazzi, and thanks to you for listening.
See you next week.
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.
(00:20):
In the first season, my co host Ril Pardess 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 the 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
(00:41):
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 dot com slash Backfired and start a free trial
that's audible dot com slash backfired. Fiasco is intended for
mature audiences. For a list of books, articles and documentaries
(01:03):
we used in our research. Follow the link in the
show notes. Previously on fiasco.
Speaker 2 (01:13):
It's mysterious, it's deadly, and it's baffling medical science.
Speaker 3 (01:18):
Federal health officials consider it an epidemic, yet you rarely
hear a thing about it.
Speaker 4 (01:22):
We had no other resources but ourselves. I thought, well,
my goodness, we're all dead.
Speaker 5 (01:26):
It's a disease first detected in the gay community that
has now spread beyond that.
Speaker 1 (01:35):
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.
Speaker 6 (01:54):
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
(02:15):
away from it.
Speaker 1 (02:18):
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
(02:40):
knee can cause internal bleeding.
Speaker 6 (02:43):
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.
Speaker 1 (02:56):
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.
Speaker 6 (03:08):
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.
Speaker 1 (03:27):
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
(03:48):
the time.
Speaker 6 (03:49):
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.
Speaker 1 (04:07):
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.
Speaker 6 (04:23):
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.
Speaker 1 (04:37):
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.
Speaker 7 (04:55):
You're looking at something that will let a hemophiliac live
and bleed like a normal person.
Speaker 1 (05:01):
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.
(05:23):
That meant people with chemophilia no longer had to rush
to the hospital every time they had a bleeding episode.
Speaker 8 (05:29):
It is called Factor eight.
Speaker 5 (05:31):
You probably have never heard of it.
Speaker 2 (05:32):
Frequent costly injections of a product made from the plasma
of blood donors keeps them from bleeding to death.
Speaker 1 (05:39):
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.
Speaker 6 (05:56):
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
(06:18):
made us reach for the stars because we no longer
were tethered to the hospital.
Speaker 1 (06:27):
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
(06:49):
of contamination had long been a risk for people with hemophilia.
Thal Bias had gotten hepatitis B from a blood transfusion
when he was in sixth grade. But with clotting factors,
the risk of contracting a blood borne disease was much
much higher. For Bias and thousands of others like him,
(07:10):
Factor was a life changing treatment. It seemed like a
risk worth taking. I'm leon Neefok from Audible Originals and
prologue projects. This is fiasco.
Speaker 9 (07:26):
Blood banks and plasma centers may be spreading a new
and mysterious ailment called AIDS.
Speaker 8 (07:32):
Cases go from two to four to eight.
Speaker 3 (07:34):
We don't really have any proof that nation's blood supply
is contaminated.
Speaker 10 (07:38):
If there's even one infected unit, it's going to infect
the whole thing.
Speaker 6 (07:43):
There were enough people dying in the community that in
your number was going to come up at some point.
Speaker 1 (07:49):
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
(08:11):
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 keeled over. People with
chemophilia are often referred to as the canaries in the
(08:33):
coal mine of bloodborne diseases.
Speaker 11 (08:36):
If anybody are going to get a blood born disease first,
it's going to be patients with hemophilia, because they get
them all.
Speaker 1 (08:44):
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.
Speaker 11 (09:00):
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.
Speaker 1 (09:14):
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.
Speaker 12 (09:34):
Investigators have examined the habits of homosexuals for clues. The
best guess is that some infectious agent is causing it.
Speaker 1 (09:41):
Some scientists feared from the start that the culprit was
a blood borne virus, but that was just a theory.
Speaker 11 (09:47):
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.
Speaker 12 (10:05):
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.
Speaker 1 (10:13):
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
(10:36):
in Miami thought to call Bruce Evitt was that the
patient also had hemophilia.
Speaker 11 (10:41):
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.
Speaker 1 (10:56):
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
(11:18):
was compromised. Before long, Evatt heard about several more suspected
cases and.
Speaker 11 (11:24):
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.
Speaker 1 (11:42):
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
(12:03):
like the Red Cross, which rely on donations. Then there
are plasma companies that pay people for their blood.
Speaker 7 (12:10):
Through its network of donor centers around the country, the
Red Cross collects over one half of the nation's hull
blood supply.
Speaker 1 (12:17):
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.
Speaker 2 (12:31):
Hi, this is Bob, Oh, please pretch now to visit
your local hospital or community blood bank.
Speaker 1 (12:36):
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
(12:58):
more than a thousand indivi vidual 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.
Speaker 8 (13:18):
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.
Speaker 1 (13:25):
Douglas Starr is the author of Blood, An Epic History
of Medicine and Commerce.
Speaker 8 (13:31):
Where are they going to find people who are willing
to sell plasma?
Speaker 11 (13:35):
Well?
Speaker 7 (13:35):
Skid Row Los Angeles and on the city's skid row,
a corner of that world blood market.
Speaker 8 (13:41):
The poor, the alcoholics, and the drug addicts sell their plasma,
and that population tends to have higher rates of diseases.
Speaker 1 (13:49):
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.
Speaker 9 (14:01):
Prisoners are able to earn a little money to buy
the nicety, truth based and smacks.
Speaker 6 (14:06):
They buy it with their blood.
Speaker 1 (14:08):
Donna Shaw is a journalist who wrote about this practice
in her book Blood on Their Hands.
Speaker 10 (14:13):
These commercial blood centers were for profit companies that were
allowed to operate inside of these state prisons.
Speaker 9 (14:22):
They're paid about eight dollars a leter. They get six
dollars of the money. The rest goes under the ind
Maade welfare upon.
Speaker 1 (14:28):
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.
Speaker 10 (14:43):
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.
Speaker 1 (15:11):
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
(15:32):
twenty 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 evit 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.
(15:55):
Anyone who went to the hospital and needed a blood
transfusion could be infected to On July twenty seventh, nineteen
eighty two, Evitt 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 for
(16:17):
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. Ewitt gave
a presentation aimed at convincing people that the new disease
was being spread through blood.
Speaker 11 (16:34):
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.
Speaker 1 (16:51):
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.
Speaker 8 (17:12):
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.
Speaker 1 (17:33):
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
(17:54):
would be reminiscent of misagenation blood laws that divided black
blood from white.
Speaker 13 (18:00):
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.
Speaker 1 (18:20):
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
the CDC was overreacting. Perhaps most surprisingly, the leaders of
(18:43):
the National Humophilia Foundation, the country's largest advocacy group for
people with chemophilia, were also not inclined to heed Eviitt's warnings.
Their problem was that if Ebitt was right, it could
mean giving up the clotting factor that had transformed so
many patients.
Speaker 11 (18:59):
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
(19:21):
it again and again and again and again and again again,
and each time you begin to get a few more converts.
But there was a large part of the hemophilic community
didn't want to hear it.
Speaker 1 (19:34):
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.
Speaker 6 (19:43):
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
(20:04):
have an alternative for their patients if they told everybody
to stop treating but to return to that life.
Speaker 1 (20:10):
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
(20:34):
had contracted AIDS. That brought the total number of known
cases to seven.
Speaker 2 (20:39):
Doctors believe they found the first solid evidence this disease
is spreading to new segments of the population by blood transfusion.
Speaker 1 (20:46):
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
(21:07):
adopt new screening procedures because of budget cuts at the CDC,
Evitt paid his own way.
Speaker 11 (21:14):
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.
Speaker 1 (21:29):
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.
Speaker 14 (21:46):
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?
Speaker 1 (22:04):
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
relied on donations for their inventory. One of the most
outspoken critics of donor screening was doctor Joseph Bovee, a
(22:26):
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.
Speaker 3 (22:36):
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.
Speaker 1 (22:46):
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.
Speaker 15 (23:03):
In America, patriotic citizens are giving their blood to save
the lives of their soldiers and sailors.
Speaker 1 (23:10):
Pretty much ever since, blood banks have been struggling to
attract as many donors as they needed.
Speaker 7 (23:15):
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.
Speaker 1 (23:26):
Journalist Douglas Starr again, after World.
Speaker 8 (23:29):
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.
Speaker 1 (23:48):
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
(24:11):
the blood banks continued to resist Bruce Evitt and his
CDC colleagues.
Speaker 3 (24:15):
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.
Speaker 1 (24:26):
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.
Speaker 7 (24:54):
I was worried today that a new and frightening disease
as being spread by blood transfusions. How doctors are seeing
it in children.
Speaker 1 (25:02):
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
(25:24):
blood transfusion.
Speaker 16 (25:26):
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.
Speaker 1 (25:46):
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.
Speaker 2 (26:01):
At San Francisco's Moffett Hospital, doctors are treating a twenty
month old boy, possibly the youngest victim ever of AIDE syndrome.
Speaker 16 (26:09):
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.
Speaker 1 (26:20):
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.
Speaker 11 (26:28):
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.
Speaker 1 (26:42):
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.
Speaker 4 (27:02):
These are all people who are interested in and working
on the problem of AIDS acquired immune deficiency syndrome. It
is a disease.
Speaker 1 (27:10):
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.
Speaker 4 (27:19):
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.
Speaker 1 (27:32):
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
idea for screening out high risk donors. Instead of asking
(27:55):
people if they were gay or if they used injecting drugs,
the plasma companies and the blood could conduct a blood
test not for AIDS, since an AIDS test didn't exist,
but for another blood borne disease, hepatitis B. Douglas Starr explains, there.
Speaker 8 (28:10):
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.
Speaker 1 (28:27):
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
(28:48):
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 amated the testing every donor
for hepatitis B would cost the country's beleagued blood banks
one hundred million dollars a year.
Speaker 11 (29:07):
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.
Speaker 1 (29:25):
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.
Speaker 8 (29:46):
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
(30:08):
them and to people in the plasma industry who think
like CEOs, they're thinking eight cases is a concern, but
out of ten million transfusions, it's not that significant. Let's
keep an eye on it, but let's not ring the
alarm bell.
Speaker 1 (30:27):
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.
Speaker 11 (30:41):
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.
Speaker 1 (30:57):
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.
Speaker 8 (31:08):
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
just couldn't believe these guys. It was like having a
(31:28):
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.
Speaker 1 (31:38):
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
(32:01):
could get funding for a new fifteen million dollar virology lab.
When it came to AIDS in the blood supply, the
Red Cross official concluded, we cannot depend on the CDC
to provide scientific, objective, unbiased leadership. Nearly three months after
(32:22):
the meeting in Atlanta, the FDA finally issued guidelines for
the blood industry, but to Evitt 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
(32:44):
merely required to present educational materials about AIDS and ask
those in high risk groups not to give blood or plasma.
Speaker 2 (32:53):
There is a new sign of the times, an appeal
that three diverse groups of potential donors not donate blood
or blood products.
Speaker 1 (33:02):
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
(33:23):
much uncertainty to make any sudden moves.
Speaker 3 (33:26):
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.
Speaker 14 (33:34):
Really, are you.
Speaker 13 (33:35):
Very concerned that if this trend continues there will be
significantly more risk to the blood supply.
Speaker 3 (33:41):
I have trouble seeing a trend as yet.
Speaker 1 (33:47):
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
(34:10):
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.
Speaker 12 (34:29):
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.
Speaker 3 (34:41):
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.
Speaker 1 (34:51):
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.
Speaker 2 (35:12):
In New York. The National Hemophilia Foundation is worried that
patients may forego their normal treatment.
Speaker 17 (35:18):
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.
Speaker 1 (35:30):
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.
Speaker 10 (35:39):
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.
Speaker 1 (35:55):
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.
Speaker 10 (36:05):
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.
Speaker 1 (36:27):
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.
Speaker 6 (36:45):
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.
(37:06):
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.
Speaker 9 (37:28):
This is NBC Nightly News, reported by Tom Brokaw.
Speaker 18 (37:33):
Good Evening.
Speaker 15 (37:34):
Researchers now believe that they have made a monumental breakthrough
in the fight against age.
Speaker 1 (37:39):
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.
Speaker 15 (37:48):
At the CDC, US Government of Scientist announced in Washington
today they have isolated a virus they believe causes age.
Speaker 1 (37:56):
The virus would come to be known as HIV. The
fact that scientists had identified it was hailed as a
major step forward.
Speaker 15 (38:04):
And the French have made a similar breakthrough in our
age research. But this breakthrough makes it possible to identify
AIDS victims and carriers.
Speaker 1 (38:12):
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
(38:34):
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 aid symptoms.
Speaker 12 (38:45):
This means a.
Speaker 19 (38:45):
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.
Speaker 1 (38:57):
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
(39:18):
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.
Speaker 8 (39:29):
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.
Speaker 1 (39:51):
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
(40:13):
who had sex with men.
Speaker 5 (40:14):
The Food and Drug Administration has recommended that any man
who has had sex with another man since nineteen seventy
seven not donate blood.
Speaker 1 (40:22):
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
(40:43):
the United States. Within the community, it is sometimes referred
to as the hemophilia Holocaust.
Speaker 6 (40:56):
I'd always suspected there were enough people dying in the
community in New York number was going to come up
at some point.
Speaker 1 (41:02):
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.
Speaker 6 (41:16):
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
(41:37):
were coming down with HIV and they were not surviving.
Speaker 1 (41:41):
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.
Speaker 6 (41:52):
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.
Speaker 1 (42:04):
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
(42:26):
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.
Speaker 6 (42:36):
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
(43:00):
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.
Speaker 1 (43:17):
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.
Speaker 6 (43:29):
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
(43:51):
favorite night of the year, and avid reader of books,
and it got to the point where she'd get to
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
(44:14):
treat her. And he you know, so she felt a
part of things.
Speaker 1 (44:20):
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.
Speaker 6 (44:31):
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
(44:52):
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
every day. So I sent everybody home, and you know,
(45:13):
within a few hours, I got into bed with her
and she passed quietly, you know, peacefully. And it's all
very sad.
Speaker 18 (45:25):
So I can't explain this, something deep and sadly.
Speaker 1 (45:55):
In our next episode, a movie star helps awaken the
country to the AIDS crisis and convinces the president to
pay attention.
Speaker 5 (46:02):
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.
Speaker 1 (46:15):
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.
(46:36):
Our researcher is Francis Carr. Editorial support from Jessica Miller
and Miller waswas archival research by Michelle Sullivan. The vice
president of Audible Studios is Mike Charzick. The editor in
chief for Audible Originals is David Blum. This season's music
is composed by Edith Mudge. Additional music by Nick Sylvester
(46:57):
of God Mode, Joel Saint, Julian and Dan English, Noah
Hect and Joe Valley. Our theme song is by Spatial Relations.
Our credits song this week is Blood in My Veins
by Elka Robatai. Thanks to the Vanderbilt Television Archive and
ABC News source music licensing courtesy of Anthony Roman. Audio
(47:18):
mixed by Erica Wong with additional support from Selina Urabe.
Our artwork is designed by Teddy Blanks at Chips and y.
Thanks to Peter Yazzi, and thanks to you for listening.
See you next week.
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