Dark History - 46: Silence=Death: The Dark History of the AIDs Epidemic
Episode Date: June 1, 2022The AIDs epidemic. We’ve all heard of it. But it seems to be discussed in hushed tones or people are too afraid to really get into it. So although we all know of it, how much do we actually know abo...ut it? Where did it come from? What actually is it? Why did it take so long for the government to figure out what it was that was killing so many? And once they did, why didn’t they do anything about it? Today we get into that and so much more. The stories of AIDs has always been, but today we’re finally clearing up any confusion and telling the whole story. Episode Advertisers Include: Best Fiends, Hello Fresh, Sqaurespace, and Apostrophe. Learn more during the podcast about special offers!
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Hi friends, I hope you're having a wonderful day today.
My name is Bailey Sarian and I'd like to welcome you to the Library of Dark History.
If you're new here, hi, welcome.
This is a safe space for all the curious cats out there who think, hey, this history really
has boring as it's saved in school.
Oh, Nene, this is where we can learn together about all the dark,
mysterious, dramatic stories that maybe we just didn't learn school and a lot of stuff, you know.
Welcome to Brooklyn, New York, 1979. Brooklyn didn't look anything like it does today. The city
was rampant with crime, unemployment, and abandoned buildings. But you still had people like Rick
Welikov trying to build community.
Rick was a great school teacher
and he was a pretty healthy guy,
well, a healthy guy.
He knew tons of people and had a great life
with his partner in Greenwich Village.
Ride round the time school was getting into full swing,
Rick started to feel a bit under the weather.
His lymph nodes were hard and he had this really like weird purple rash.
So Rick does what anybody would do. He went to get checked out, right?
A bunch of tests later, doctors diagnosed Rick with something called Kapasi Sarcoma or KS.
But that diagnosis made no sense because this illness was usually diagnosed in men with Mediterranean ancestry.
Rick was neither old nor Mediterranean.
Now, although his diagnosis made no real sense,
no one was too worried because KS was known to progress slowly.
Not many people actually ended up dying for him either,
but I mean, then things started to get really scary.
The KS,. Rick had developed, was spreading to the rest of his body,
could extremely fast.
The doctors had never seen it progress like that before.
And in a matter of months, Rick's life was in a steep downward spiral,
and there was no one that could help him.
Overcome with exhaustion, Rick became a shudden.
I mean, he had to quit his job at the school, and it just seemed like no matter what the
doctors did, he only got sicker.
It became clear that it wasn't just K.S. at this point, as Rick continued to rapidly decline.
Eventually, on Christmas Eve of 1980, just about a year since Rick first started feeling unwell, Rick Willikov died at
just 37 years old. And the doctors, they had no idea why. But the tragedy didn't stop there.
Shortly after Rick's death, a buddy of his named Nick got sick too. Now he had a seizure and various
other illnesses that were extremely unusual for a healthy young guy.
By the end of his life, Nick had white foam coming out of his nose, ears, and mouth.
Whew! He died on January 15, 1981, after a series of heart attacks.
Soon after their friend West died, then their friend Jack died, and this pattern just kept going.
This was a killer without a name, and no one knew where it had come from.
This was how the pieces started falling into place for what would become known
to the world as the AIDS epidemic. And that's what we're talking about today.
You've probably heard of AIDS and of the epidemic in the late 80s, early 90s,
but how much do you really know? Now, this is a very dark story. I'm giggling because you know it's just uncomfortable.
But definitely one that I think we should talk about. So let's do it. Let's fucking talk about it. Let me open up to chapter 8s.
So before we get started, AIDS and the AIDS epidemic was a global issue.
There wasn't a single region of the globe that was not affected.
But for the purpose of this episode, we'll be focusing on the epidemic in the United States
in the late 80s and early 90s. Okay, got it, good, great. Okay, so when did AIDS start?
Well, researchers have learned through blood samples that the virus states all the way back to
around 1931. But the first officially known case was in a Congolese man in 1959.
That same year, a Haitian man living in New York City died of a rare lung infection called
pneumoacistis pneumonia, or PCP, which is associated with AIDS.
There were some HIV related deaths between 1959 and 1979, but no one knew they were HIV
related because no one knew what the
heck HIV was.
And there was no major outbreaks until Rick and his friends had passed away.
Doctors later discovered that the first person to die from AIDS was a man named Ken Horn.
Historians is less known, maybe because Ken was a sex worker and talking about that makes
people uncomfortable.
So while Rick and his friends were struggling with the illness in New York,
3,000 miles away in Southern California, five men came down with PCP.
Now all five died shortly after. Like KS, PCP shouldn't be killing young, healthy people,
but it was happening, and it was happening a lot.
I mean, it didn't take doctors long to realize there must be some link between KS and PCP.
There had to be some new infectious disease that was making these rare illnesses appear
in otherwise healthy young men. But what the heck was it? By July of 1980, there had been 26 deaths
linked to this mysterious disease,
so the CDC had started task force to investigate.
And around the same time,
the media began to report on these deaths.
One of the biggest reports was written by a doctor
named Lawrence Altman for the New York Times.
Now Lawrence noted that everybody who was sick with K.S. was a gay
man. The story spread like wildfire, and because K.S. was a form of cancer only seemed to affect gay
men, a nickname for K.S. came onto the scene. They were calling it gay cancer. Really unique.
A few years later, in May of 1982, the New York Times published another report.
The title was New Homosexual Disorder, Worry's Health Officials.
In the report, they gave the disease a name, quote, gay-related immune deficiency.
Oh my god, also known as GRID.
This new name and the media coverage led to a huge stigma around the gay community.
I mean, what do they expect, right?
People weren't being told much about this disease,
but what they were being told was that it somehow related to the gay community,
and that it was killing people.
If you were gay, you were immediately identified as a threat.
An infected person who, like, just should be shunned.
The hysteria wasn't helped by the fact that even before this mystery illness,
the gay community was already ostracized
because of good old-fashioned homophobia,
which would continue to have a large effect
on how the epidemic progressed,
but we'll get into that.
Then in September of 1982, the CDC issued a report
that said they didn't really have an answer
for how to cure the disease.
So it's like great, super helpful, thanks. But this report was very important for a number of reasons. First, it included data that the disease didn't only affect gay men. It was showing up
in heterosexual men as well. In fact, 25% of all cases were found in people who weren't gay or bisexual men.
So calling it a gay man's disease wasn't even accurate, and more importantly was incredibly
problematic.
Obviously, I think we can agree, I hope we can agree on that.
Since it was now known that this disease did not just affect gay men, the CDC gave grid an official name, has an official name now,
acquired immune deficiency syndrome or AIDS for short.
They gave a medical definition of AIDS saying, quote, bear with me, because this is very
proper medical term definition.
You get it.
At least moderately predictive of a defect in cell mediated immunity,
occurring in a person with no known cause for diminished resistance to that disease.
Yeah, that's what I'm talking about. Over my head. Like what? Okay. Basically, a disease that
attacks the immune system, making it too weak to defend against diseases that it would otherwise
making it too weak to defend against diseases that it would otherwise would have been able to.
Great. Some of these symptoms of AIDS included KS and PCP, the diseases that killed the men we talked about earlier. Now these were now classified as something called opportunistic
infections, which are, quote, infections that occur more often or are more severe in people
with weakened immune systems.
So when you hear the term A's related illness, I mean, that's what they're talking about.
People don't really die of AIDS.
They die of the diseases that result because of their compromised immune systems.
So among the many things that were scary about A's in the 80's was the fact that not even
the CDC understood what was going on.
And so people in the gay community, I mean they were freaking scared.
One activist who survived the early days of the epidemic said quote, the obituraries
were like the gay men's sports page.
People were dying so frequently and in such high numbers that the obituary
is where you turn to keep up with who was dying. I mean isn't that super fucked up?
Now despite news reports coming out that the clarified aids was transmitted through the exchange
of bodily fluids like blood and semen, the stereotype that aids only affected gay men still
continue to thrive. Now adding to the problem was the fact that newspapers only affected gay men still continued to thrive.
Now adding to the problem was the fact that newspapers and the government
they weren't correctly communicating like how it was spread.
So this failure escalated the fear, judgment, tensions, and panic.
Then the CDC published a report on January 7, 1983,
that announced the first case of AIDS in
women, which, I mean, this is huge.
But since infection rates were still most prominent among gay men, the women were considered
outlier cases and didn't do anything about the stigma still hanging over gay men.
It seemed like as information was coming to light, things just kept getting worse.
But later that year, a pair of French doctors were able to identify a possible cause for AIDS,
a retrovirus that caused a person's immune system to weaken over time.
In 1984, they presented their findings to the CDC, using samples of blood the CDC had
collected from AIDS patients in the United States, they
successfully identified the retrovirus as the cause.
This retrovirus would later be known as human immunodeficiency virus or HIV.
And if HIV is left untreated, it will lead to the presence of AIDS.
This was a huge breakthrough.
They now knew what caused this mystery disease,
and it was a step to hopefully finding a cure.
The CDC continued to issue additional reports
clarifying individual aspects of the disease.
They even eventually identified needle-sharing as a key way
that the disease spread among drug users.
Plus, they even completely ruled out the transmission via casual contact air, water, food,
or environmental services.
So they were coming out with like a lot of really great information, but the disease was rampant.
In 1981, there were 42,000 people living with HIV. In 1982 that number
quadrupled to 160,000. By 1985 there were 10 times the number of cases that in
1981, 420,000. That's insane. By the end of 1985, every single region on Earth
had reported at least one case of AIDS.
Now, why wasn't anyone doing anything about this?
First, we have to pause for an ad break, BRB.
B-R-B.
So, let's recap.
There's a scary disease running rampant.
Doctors have a vague idea where it comes from, but absolutely no clue how to stop it.
It's primarily affecting gay men, and people in the United States are majorly homophobic.
A survey by the National Gay and Lesbian Task Force found that in 1985, one in five gay
men had been physically assaulted for being gay.
So the stigma of AIDS made gay people
on even bigger target than they were previously.
And all of this was made worse by the man occupying
the White House.
This guy is a problem.
He's always in our stories, is he not?
His name was Ronald Reagan.
Now, if you've listened to Dark History before,
you know that Mr. Ronnie has had his hands
in some of the darkest moments in recent history.
Crap cocaine, here he comes, the prison industrial complex, Ronnie, he was there with us, fucking
over people with disabilities, Ronald, he was there.
But to understand his role in the AIDS epidemic, we have to look back at his presidential
campaign in 1980.
Ronnie ran against the incumbent Jimmy Carter and won big time.
But how does a slick former actor from California beat out a Christian fundamentalist from Georgia?
Well, Ronnie got a group of his own fundamentalists to accuse Carter of catering to the gays. They also played
off the fear that a gay man had been elected to public office in San Francisco. Now if this
kept up, a gay man might be elected president.
Oh no! What are we gonna do? We can't have that happen.
Now remember, this is before the AIDS epidemic
was on anybody's radar.
So a lot of this was just run of the mill homophobia.
During Ronnie's campaign, he flat out said
he was against the so-called gay lifestyle.
So it wouldn't be an understatement to say
Ronnie had homophobic tendencies.
So don't come for me, okay?
In the comment section.
And while these tendencies may have a minor part of his strategy to win office, once he was
there, they had huge ramifications.
So remember all those CDC reports we mentioned?
We LOL.
Me and Joan.
Well, at this time, the head of the CDC had been appointed by Ronald Reagan.
Now this agency, quote, protects the public health.
But unfortunately, this guy was more about protecting Ronnie's own interest.
So how did this play out?
Instead of clearly explaining how HIV was transmitted, which I don't know, maybe would have cleared
up confusion and calmed a lot of people down, this student charged in nothing.
And according to an insider at the agency, the CDC was fully capable of creating a prevention
plan to slow the spread of AIDS in the United States.
And since there was no vaccine or treatment for HIV at the time, this should have been
their primary focus.
I mean, shit, you think, right?
If only people did their jobs, you know?
LOL.
Did administration knew how big a problem this was,
and they chose to do nothing?
Well, not exactly nothing.
They openly mock the victims.
I mean, that's right, they did that.
Which brings us to Ronnie's press secretary.
Larry Speaks.
Honestly, though, that's a good last name.
Mr. Speaks.
Okay. Okay, Laura.
Laura.
So this guy Larry Speaks, he's a major douche canoe.
And you're wondering, well, how douche is this guy, Bailey?
Well, there's actually a recording from October 15, 1982,
between a reporter named Lester Kinsolving and Larry.
Now, here's how that conversation went down.
Lester, quote, does the president have any reaction
to the announcement by the CDC that AIDS is now
an epidemic in over 600 cases.
Larry, AIDS, I haven't got anything on it.
Lester.
Over a third of them had died.
It's known as the gay plague.
And then they laughed.
No shit, but wait, it gets worse.
Lester.
No, it's pretty serious.
One in every three people that get this have died,
and I wonder if the president was aware of this.
Larry.
I don't have it.
Do you?
And then everybody laughed again.
In fact, they burst into laughter
13 times during the press briefing.
Over the next two years,
Lester would show up
time and time again
and ask Larry about AIDS.
But Larry would downplay the problem,
and the press pool would just laugh.
By 1984, Lester asked Larry if Reagan had any opinion
about the AIDS epidemic, and Larry responded, quote, no.
But I must confess, I haven't asked him about it.
Once again, laughter happened.
Meanwhile, there were an estimated 10,000 people with
AIDS in 1984, and 4,200 had died since the beginning of the epidemic. These chuckle
fucks weren't doing anything but cracking jokes about it. Chuckle fucks, chuckle fucks.
I like that.
And Ronnie's press secretary wasn't the only part of the administration helping rode the douche canoes. His communications director, Pat Buchanan, flat out called
AIDS Nature's Revenge on Game Man. Pat straight up said, quote,
the poor homosexuals, they have declared war upon nature and now nature is
exacting an awful retribution."
End quote.
Another one of Reagan's supporters, Reverend Jerry Falwell, said,
quote,
"'Aids is the wrath of God upon homosexuals.
These people are so lame."
And this was the general vibe in the administration for a while.
As the epidemic just continued to get worse and worse.
In 1985, Reagan finally started to give speeches
referring to the AIDS epidemic as the federal government's number one health priority,
which is like an eye roll. I know, you know, okay. But unfortunately, he didn't back up
any of those speeches with funding or public policy. When the CDC went to the White House requesting support
for their plan to educate the public about what AIDS is
and like how can be prevented, they were told like,
look, look pretty and do as little as you can.
In fact, it was an open secret within the administration
that Ronnie wasn't about to put any additional resources
into fighting the AIDS epidemic.
He thought agencies would
skim money from other projects and just make it work. And whenever anybody talked about funding
AIDS research, he just ignored it. So while Ronnie's administration can't be blamed for creating
the AIDS epidemic, they certainly can be credited with amplifying it and not doing much to fix it.
I mean, how convenient that the disease was eradicating something they didn't like.
The gay community?
If all that wasn't bad enough, Ronnie's search in general, C. Everett Cooper, was actively
forbidden to say anything about AIDS.
And he stayed completely silent for the first five and a half years of the presidency.
But he had to know what was going on.
Don't let's not be dumb here.
You know, and in 1986, Everett broke his silence and issued a Surgeon General's warning.
Many historians say that if Everett had been more proactive sooner, the CDC could have delivered an
AIDS prevention program years earlier, saved countless lives, and cut off the hysteria
that was like still brewing.
To explain how intense the hysteria was, let me tell you a little story about America's
mom, fucking Nancy Reagan.
She sucks.
Apparently, in 1988, Nancy accidentally took a sip of water from a gay friend's glass,
and she went into an all-out panic. She was so worried she was going to catch AIDS,
and this wasn't just because Nancy was a homophobic ass. I mean, there was very little being done
to change misconceptions like these. In Nancy's case, she even had a White House doctor telling her there was
nothing to worry about, but she still had her doubts. I mean, like, how do you know? How do you
know? Nancy Reagan, I mean, she was questioning a medical professional who had dedicated his entire
life to knowing these kinds of things, but she still like didn't believe him. By this point,
fear-mongering media campaigns about AIDS had started spreading all across the world, and they were unavoidable.
There was a famous ad that had the words,
A bad reputation isn't all you can get from sleeping around.
And underneath the ad was a picture of a tombstone.
There was even an ad from Australia that compares people dying of AIDS to bowling pins being knocked over by the grim reaper.
Oh my god.
These were well-intentioned images meant to encourage people to have safe sex, but instead of raising awareness about AIDS,
the ads fan the flames of fear and homophobia.
Now we're going to pause for an ad break.
I'm gonna get comfortable somehow.
So, the world had come to expect the United States to be a leader in a time of crisis.
And you could definitely say that the AIDS epidemic sweeping the globe had become a time of crisis.
But the CDC, bullied by Ronnie's administration, didn't have a meaningful or successful response.
From 1981 to 1987, HIV and AIDS cases doubled every year.
But not just that,
because during that time,
the number of deaths doubled yearly as well.
So I'm talking thousands of young people,
still primarily gay men are dying.
And the government was busy cracking jokes
about the AIDS epidemic.
So a whole lot of gay people and their allies
were getting super pissed off.
If their government wasn't gonna do anything about it,
they sure as shit weren't gonna stand by
and watch their friends and loved ones die.
They were mobilizing.
And the foundations for this
had actually been put in place years before.
Back in 1981, a group of men got together
and formed the gay men's health crisis,
or GMHC.
They set up an answering machine
that became the world's first AIDS hotline
and got 100 calls on the first night alone.
They also passed out 50,000 copies of their newsletter,
which detailed different methods of treatment for people with AIDS.
Now this pamphlet, it helped doctors, hospitals, and clinics.
They also helped get food and supplies to people.
I mean, this was huge because AIDS was debilitating.
And people needed help through the day.
I mean, my God.
GMHC created a support system for people with AIDS.
They were also responsible for the first major AIDS fundraiser.
And while the federal government was twiddling his,
its thumbs, GMHC also published safer sex guidelines.
Cause just say no works about as well with sex as it does with drugs.
You'd think all of this would have maybe, I don't know, inspired the Reagan administration
to make some meaningful change when it came to the AIDS epidemic, right?
No, of course not, not at all.
Ryan Dan Pay attention to the AIDS epidemic
until a legendary Hollywood star named Rock Hudson
was diagnosed with AIDS.
Now, Rock was one of the biggest sex symbols
in the world in the 1950s and 60s
and always played like this tall, dark handsome,
a mysterious man. Rock was the perfect example of that old saying
men want to be him and women want to be with him. You know what I'm saying? And one of his best
friends in the world was none other than Ronnie Reagan. It turns out that rock was a closeted gay man
his entire life, and he didn't come out until July 25th, 1985,
when he announced an oppressed release
that he had been diagnosed with AIDS.
And remember earlier, when I said Ronnie started mentioning
in 1985 that AIDS was the nation's top priority?
Well, this was because it took his best friend getting sick for Ryan to even give a shit.
Rock died on October 2nd, and the day he died, his estate granted $250,000
to co-found the American Foundation for AIDS Research with Elizabeth Taylor,
which she continued until she died in 2011.
The day Rock Hudson died in 1985, Congress
provided 190 million in funding for AIDS research. But the real change in how the
US government started to deal with the AIDS epidemic came when a 15-year-old
middle school student from Indiana named Ryan White was diagnosed with AIDS. Ryan suffered from hemofilia, which is an illness that causes immense bleeding.
Like if he scraped a knee, he could bleed to death. Holy shit.
Because of his hemofilia, Ryan required weekly transfusions to keep his blood content in his body safe, right?
It was because of one of these transfusions
that Ryan became HIV positive,
which unfortunately is how it was also discovered
that the U.S. blood supply
had been tainted with HIV.
After his diagnosis, Ryan stopped attending school
while he was receiving treatment.
Then a few months later,
he wanted to go back to school to see his friends again.
His mom was kind of worried about him, but she made a formal request to the middle school for him to return.
And on June 30, 1985, the school's superintendent denied their request.
The denial was fueled by a petition that had circulated among 117 parents and
50 teachers who didn't want a kid with AIDS going to school with their kids. Now remember, by this
time the CDC had been very clear that AIDS was not an airborne illness, nor was it something you
could like contract simply by being near someone with it.
But the damage caused by all this fear mongering of the earlier years, I mean, that's, it was done, you know.
And the stereotypes and bigotry were no longer reserved just for people who were gay,
but now anyone living with AIDS. Ryan and his mom pushed back, and on November 25, 1985,
the Indiana Department of Education declared that Ryan had to be let back, and on November 25, 1985, the Indiana Department of Education
declared that Ryan had to be let back into his school.
You know, yay, but unfortunately,
the school board appealed the decision to keep him out.
A few months later, the department forced their hands,
and Ryan was let back into school.
But a few weeks later, a circuit judge for the state
of Indiana had him thrown out again.
He went on like this for a while.
Ryan would get to go back into school.
The school would cry about it,
and he would be thrown out.
Repeat, repeat.
It was just like, what the fuck?
He's a child.
Grown, you know, the worst people are the grown-ass adults are the worst acting people.
Not children, you know. Ryan's story made national news. The impact of the AIDS crisis was finally
hitting home with the average person in the United States. Ryan was seen as a squeaky, clean, innocent victim.
Now, this completely changed the public perception
of what a person living with AIDS looked like. Reporters lined up to interview Ryan and
get his thoughts on what the government could do. Oh my god. Aren't they asked the fucking
government what they could do and not a 15 year old child? My god.
Slyri's like Sir Elton John came out and supported him. Ryan's story helped inspire Elton to later create the Elton John AIDS Foundation, which since has raised over $600 million
to support HIV prevention, education, programs, and care for those who need it. On July 15,
the Indiana Court of Appeals officially ended their case against Ryan.
So he was finally allowed to go back to school.
Unfortunately, his time in school didn't last much longer because Ryan passed away on April 8,
1990, at the age of 18. Ryan's legacy has lived on long after him, though.
Four months after he died, Congress enacted the Comprehensive AIDS Resources Emergency Act,
or Care for Short.
This finally provided federal funding of $220 million for AIDS treatment.
But Ronald wasn't the one who signed the bill.
His successor, George H.W. Bush did.
At the same time, he passed the Americans with Disabilities Act,
and this included federal protections for people with AIDS.
So finally, we are seeing some action being taken by the government
to help deal with the epidemic.
But you know who was still being overlooked when it came
to how the federal government viewed AIDS?
Women with AIDS.
Let's pause for a quick little word from today's sponsor.
One of the most under-discussed parts of the AIDS epidemic was how it affected women,
especially women of color. Remember earlier when I talked about opportunistic infections,
which is actually what killed people with AIDS? Many of the opportunistic infections that affected women who are HIV positive do not affect men.
And for a good chunk of the early 80s, they weren't even listed in any of the CDC's reports.
There was a saying at the time, quote,
women don't get AIDS, we just die from it.
Oh my god.
Plus, I guess women were dying faster too.
And then there were the kids to think about. The CDC reported that 50% of all pediatric AIDS cases in
1983 were among black Americans. So pregnant women with HIV were passing it on to their children
in alarming numbers. So there was a lack of women specific resources all around.
Most people still considered AIDS to be a gay man's disease. And even after the CDC confirmed
in 1983 that women could contract this virus and had different symptoms and men such as
cervical cancer or bacterial pneumonia. But perceptions finally started to change
because of a black woman who lobbied tirelessly
for those diseases to be included in a CDC's list
of opportunistic infections.
Say hello to our new friend, Katrina Haslip.
Katrina was born in Niagara Falls in 1959
and was one of 11 children.
When she was in her 20s, she had run into some difficult times
and ended up getting into some hard drugs. In 1983, she started doing sex work for money,
but got stabbed and required a blood transfusion. Not too long after, she was convicted of
pickpocketing and sent to Bedford Hills Correctional Center. On her first day in prison, Katrina was given a physical
and was informed that she had AIDS.
Now, Katrina was shocked.
I mean, at the time,
there was still the stereotype
that only gay men could get AIDS.
But when she did a little digging,
she found out that nearly 20% of the women
entering her prison were HIV positive.
Now, according to Katrina,
quote,
women were dying in their cells
and in the hospitals because they were giving up
and because they felt there was no hope.
End quote.
Since there weren't any treatments for women,
especially female prisoners,
she knew she needed to get to work to make a change.
Katrina educated herself and became a jailhouse lawyer.
Fucking, good for her.
There was an assumption at the time that if you went to prison, you were definitely going
to get AIDS, and if you got it, you were ostracized.
Even if you went to get tested for HIV, you were ostracized.
Katrina's work helped fight back against the stigma.
She also founded something called the AIDS Counseling and Education Program, or ACE, for short,
to organize prisoners infected with HIV who were being ignored.
After she was released, her advocacy work continued.
Her first goal was to change the CDC's definition of ACE to include opportunistic infections,
specific to women.
The reason it was so important for the definition of AIDS to include opportunistic infections, specific to women.
The reason it was so important for the definition of AIDS to change was because, without it,
women couldn't get the treatment and support that might save their lives.
One lawyer said it took her one to three years to get her client's benefits.
Benefits that people living with AIDS received automatically.
So many of her clients died before she could even get them help.
And these women had children who also tested HIV positive
and they were not getting services either.
Sally Katrina died in late 1992.
She was just 33 years old,
but her work and legacy live on.
Because in January of 1993,
the CDC finally expanded the definition of AIDS,
and it wasn't just women who benefited from Katrina's work. I mean, the new
definition of AIDS also had a huge impact on people of color, poor people, and
injection drug users. So Katrina's work was literally life-changing. From 1992 to 1993, reported AIDS cases in the United States went from 48,000
to almost 107,000. This wasn't only because more people were contracting HIV, but because people
who already had the virus were now being recognized officially. It gave more people automatic access to
medication, treatment, benefits, housing, Medicare, and civil rights protections.
People living with AIDS were vulnerable in pretty much any way you can imagine, so
the significance of expanding more resources to more people can't be overstated.
And though things were starting to move in the right direction to help those with the disease, there was still a lot of shitty stuff going on. I mean, one thing we haven't discussed
much is how hard it was for people with HIV or AIDS to get life-saving treatment. People living
with AIDS, they were freaking fed up about it. Tons of organizations like GMHC had already sprung up
by the late 80s. But one of the most notorious ones was a group of in-your-face activists that evolved
from GMHC.
They were called the AIDS Coalition to Unleash Power, or Act Up.
And that's exactly what they did.
Love that.
Act Up took to the streets in protest of the government's inaction, and when I say they
took to the streets, I mean, they literally took to the streets in protest of the government's inaction. And when I say they took to the streets, I mean they literally took to streets. Actup's mission was to carry out acts of civil disobedience
every day to focus national attention on the AIDS crisis. They were known for loud,
aggressive tactics like marching through the streets holding signs and shouting silence
equals death. They wanted to encourage people to not only come out as HIV positive, but to come out
period.
In other words, more visibility would lead to more being done about AIDS.
In June of 1987, they scored their first huge victory when they protested Northwest Orient
Airlines, which was barring people with AIDS from their flights.
ACT UP occupied their corporate office, protested, and eventually brought two lawsuits against
the airline.
They won, and the policy was reversed.
Over the next few years, they led further protests against any media that spread misinformation
on AIDS.
ACT UP was out there doing the work to dispel the bullshit.
One of Actup's biggest fights came after the release of a brand new drug meant to treat AIDS,
called Azida Yamei-Litin, or what most people refer to it as AZT.
AZT was the first known treatment for HIV and AIDS, but it wasn't a miracle cure.
Think about anyone you know who has ever had cancer treatment.
Yeah, they're getting something
that is getting rid of their disease,
but it is doing damage to the body at the same time.
I mean, the trade-off becomes experiencing
a shitty quality of life right now
to maybe extending your life, you know?
I mean, that's a bit what ACT was like.
ACT was actually first tried as cancer treatment,
but when it didn't work, they shelved it.
But then it started working for HIV and AIDS,
and after suffering all the side effects,
it only prolonged a patient's life for about a year.
I mean, if they were lucky.
But most people didn't have to debate
whether or not they were willing to take AZT because the cost was astronomical. Okay. To be on the
medicine for a full year, it cost a patient $10,000. For reference, the median United States income
at the same time was just $26,000.
So just under half of all the money a person made in a year would have to go to this.
And that's assuming a person living with AIDS hadn't already been fired and was still physically capable of holding a job.
And if you were lucky enough to make it through the year, you'd have to come up with another $10,000
because HIV treatment wasn't a one-time thing. I mean this is an ongoing thing. So yes, this
was an important medical advancement, but it was too expensive for most people.
Combine this with years of government and action and paranoia, people were
ready to take two districts and act up led that charge.
On September 14, 1989, act up rallied 350 people in front of the New York Stock Exchange
to protest Burroughs Welcome, a company that manufactured and set the price of AZT.
The protesters sounded hundreds of fog horns as they ran through the streets of Manhattan,
encouraging supporters from surrounding buildings to come join in the fight.
While this was happening, other members of ACT UP broke into the New York Stock Exchange
and chained themselves to the VIP balcony, dropping fake $100 bills onto the floor.
This act of civil disobedience disrupted the stocks exchange opening bell for the first
time in history.
Ooh, I love that.
There were two photographers within the group who took pictures of the entire event.
Actup sent the photos to the Associated Press, and the protest quickly became national news. Within four days, Burroughs welcomed drop the price
of AZT by nearly $4,000,
which is great.
I mean, it's progress, we love progress,
but the fact that they could drop it so easily
and the fact that it's still like, it's still expensive,
you know, shh, stupid, fucking people.
And for about seven years, AZT was the go to treatment for AIDS.
It was really the first ray of hope during this horrible epidemic.
And it didn't just help people living with AIDS, it helped their children too.
Before AZT, if a woman with HIV or AIDS was pregnant or got pregnant, her baby would
be born HIV positive.
AZT changed that. Would administer to a pregnant woman,
AZT would often prevent the transmission of HIV. I mean, it didn't work for everyone.
In fact, the high dosage at the time, which was like 1200 milligrams,
which is three times what is actually needed, made it impossible for a lot of
people to take it.
But something even more revolutionary eventually was developed.
In 1996, scientists invented heart, which stands for highly active anti-retroviral therapy.
Heart is what people commonly refer to as the drug cocktail used to treat people with
AIDS. It's called a drug cocktail used to treat people with AIDS.
It's called a drug cocktail because it's constantly being adjusted based on how your body responds
to it.
Add a little bit of this, subtract a little bit of that, but I mean, I'm a little, little
little, little, little, you know.
It controlled the amount of the virus and the patient's blood.
This increased the life expectancy of people infected with HIV.
Now from there, there were two huge advancements
in the fight against HIV and AIDS.
The first was something called post-exposure prophylaxis.
Yeah, our pep!
Yeah, yeah, yeah, yeah, yeah, yeah, yeah.
It was a pill someone could take
if they came into contact with the body fluis
of someone who was HIV positive.
And this was like groundbreaking because it didn't only pertain to unprotected sex, but also victims of sexual assault. People experiencing occupational hazards like nurses or police
officers. And children born to HIV positive mothers. It wasn't 100% effective, but if treatment began
within 72 hours of exposure,
it was highly likely a person wouldn't contract the virus.
But there's one major flaw with this reactive strategy.
That being, you'd need to know if that person,
if someone was like HIV positive.
So what if there was a treatment that was proactive
and prior knowledge wasn't even necessary?
Well, researchers were thinking the same exact thing, okay?
And that's when they came up with prep
or pre-exposure prophylaxis.
This is a pill you can take before your day even starts,
which reduces the risk of getting HIV from
sex by about 99% as huge.
While less is known about how effective it is for drug users, it is known that PREP will
reduce the risk of getting HIV by at least 74% when taking appropriately.
One of the most incredible advancements in HIV and AIDS treatment is that it has
evolved to the point where the virus is no longer detectable with a regular blood test. And just this
past December, the FDA approved the very first injectable prep treatment. So instead of taking a pill
every single day, people can get a couple of shots every couple of months, which means AIDS is no longer a death sentence.
It is now viewed as a chronic, but manageable, disease.
I mean, that's huge, wow! That's huge.
Let's pause for one last ad break.
There were so many game changers who put their lives and careers on the line in order
to stand up for what was right during the paranoid frenzy that surrounded the onset of
AIDS.
In 1985, informed by grassroots community activism, the AIDS walk was started in Los Angeles.
The very first one actually happened three days after Rock Hudson went public with his AIDS
diagnosis.
This is a walkathon fundraiser that has drawn hundreds of thousands of supporters and millions
of dollars in donations since it began.
It now takes place every year all over the world.
The same year the AIDS Walk started, an activist named Cleve Jones had learned that over 1000
San Francisco's had lost their lives to AIDS.
So he set up a candlelight march through the streets of San Francisco, where he asked local
activists to write the names of everyone who died on cards.
At the end of the march, the activists taped the cars to the wall of the San Francisco
Federal Building.
Cleve said there were so many cards that the building now looked like a quilt.
This inspired him and his activist friends to start an AIDS Awareness Group, known as
the Names Project.
Now the goal here was to ensure nobody would ever forget the names of anybody lost during
the epidemic.
By September of 1987, the N's project had begun work on something called
the AIDS Bermorial Quilt, which consisted of over 1,900 individual quilts sewn together.
Each quilt was three feet by six feet to represent the size of a grave. On Stark.
At each panel represented somebody who died of AIDS. On October 11, 1987, the quilt was unfolded on the National Mall in Washington, DC, and
was visited by half a million people in its first weekend.
Word spread quickly through the news, inspiring a continuation of the project across the
entire globe.
And in just four months, Cleve and the other activists
managed to raise $500,000 for AIDS research.
Today, this quilt is still being added to
with over 50,000 panels sewn in
and over 100,000 names of people
who have died of AIDS on the panels.
This quilt is now so huge
that the entire display can't be shown publicly.
But if you wanna see the AIDS Memorial quilt, The quilt is now so huge that the entire display can't be shown publicly.
But if you want to see the AIDS Memorial Quilt, the National AIDS Memorial Foundation
has an interactive version online, definitely check it out.
The same year the quilt was shown in DC, Princess Diana made headlines when she shook hands
with an HIV positive person.
At a time when the idea still existed that casual contact with a person with AIDS
could lead to infection.
If you remember from earlier,
the CDC had already disproven this like three years before,
but the myth had continued to live on.
Princess Dye knew this was bullshit
and wanted to do something about it.
So she went out of her way to publicly hug and
touch people living with AIDS at a time when they were being treated like outcasts. Then we have
people like Keith Haring who brought activism to the art world. He was an openly HIV positive gay
man who literally used his body as a canvas, painting and photographing himself in the nude as a kind of social commentary.
His bravery as an activist is even more impactful when you know he was a successful commercial artist.
Even today you can find his work adorning popular brands. Before he died in 1990, he set up the
Keith Haring Foundation to help fund HIV and AIDS prevention and education.
There were popular plays and movies like The Normal Heart and The Band Plaint on, Angels
in America and Philadelphia, which brought more attention to the crisis.
Broadway itself formed Broadway Cares Equity Fights AIDS, which collected donations from
theatergoers as they entered and left the theater.
We also have tennis icon Arthur Ash.
Now in a sport dominated by white people, Arthur was the first black man to win the US Open
and Wimbledon titles.
But after a blood transfusion, Arthur was diagnosed as HIV positive.
Now wasting no time, he immediately created the Arthur Ash
endowment for the defeat of AIDS. And after his death in 1993, President Bill Clinton awarded
him the Presidential Medal of Freedom and the arena where the U.S. Openest held every year
was renamed in his honor. Arthur Ash Stadium is the largest tennis stadium in the world. Finally, in 1994, a gay
man living with AIDS named Pedro Zamora appeared on MTV's The Real World. You know, where people
start being polite and start getting real. Real where I wanted to be on the show so bad.
So Pedro was cast in the show at a time when most families had never had a gay person
in their home.
Okay, much less appearing on their TV on a weekly basis.
He used the opportunity as a platform to be open and honest about what it's like to
be a gay man living with AIDS in the United States.
And he really humanized people living with AIDS.
Now remember, people were so very afraid to come out of the closet.
Anyone who was gay, and especially people who were HIV positive, I mean they could lose their jobs, their homes, their health insurance,
their families. So Pedro's decision to go on the real world?
Huge. Amazingly brave. And it served as a huge inspiration to so many.
I mean, the list goes on and on and on, and I wish I could name each and every one of them until everyone's stories.
I didn't even get into people like Magic Johnson, Freddie Mercury, Greg Lugannis, Billy Porter, Jonathan Van Ness, Charlie Sien, Alexis Arquette, Anthony Perkins, Robert Reed, Howard Ashman,
EZE, Jill Scott Herron, Trinity Bonet, Isaac Asimov, Liberacee, and those are just like some famous
names, right? There's no way I can see her name, everyone. The biggest problem with the AIDS
epidemic is and has always been the failings of the government to contain it early on.
Think about it like this.
The first traces of AIDS spreading started around 1981, and protections and treatments didn't
go mainstream until about 1990.
That's the entirety of both of Ronald Reagan's terms and the start of George H.W. Bushes.
Since the epidemic began, 110 million people have been infected with the HIV virus, and 36 million people have died.
Most of those infections and deaths have occurred in the United States.
Even though the U.S. government started AIDS awareness programs in the late 80s, many of them didn't target black men. The National
Task Force on AIDS Prevention found in 1990 that these programs had almost completely failed
to reach black men at all. Just five years later, AIDS transmissions were the highest among
black men at around 37% of the population. And the problem persists today because even though African Americans make up
13% of the US population, they account for 40% of all people with HIV. And as far as how AIDS
affected women, as recently as 2017, 70% of AIDS cases in the US were African American women.
I mean, there's no way of knowing exactly how many of these infections could have been
prevented, but one thing we know for sure is fuck Ronald Reagan.
For a while, the US was considered the epicenter of the A's epidemic, especially gay mechas
like New York, San Francisco and Los Angeles, but the nature of the epidemic has evolved over time,
and Africa remains the most severely affected. Nearly one in every 25 African adults are living with
HIV. The number accounts for more than two-thirds of the people living with HIV worldwide. It doesn't
help that the anti-retrovirals were available in Western countries in 1995,
but for the most part, not available in Africa until 2003.
Today, 77% of men, women and children who develop AIDS and sub-Saharan Africa are expected
to die.
So even though things seem to be under control in the United States and other wealthy countries,
this disease is far, far from over.
You may think AIDS is a thing of the past, but it's not. I mean, as of 2020, there are still
37.7 million people on the planet living with HIV and AIDS. And AIDS is perhaps the only terminal
illness that comes with shame. Even the expression,-risk behavior implies the person who's suffering is to blame for their
health condition. Smoking is high-risk behavior, but when someone gets cancer, people don't blame
them for getting sick. And the shame is reiterated by the government as well. Back in 1983, the FDA banned gay men from donating blood,
and this ban is still in effect today.
The stigma around HIV and AIDS forces many people
to hide their status even from family and friends,
which makes it harder for them to get help.
I think it's important that we still remember HIV
and AIDS is around two days. So, download the description box, I'm going to leave a bunch of resources
where we can further educate ourselves also where we can help how we can help and
help. Well everyone, thank you so much for learning with me today. Remember,
don't be afraid to ask and like get the whole story because we deserve that,
don't we? Now Now I'd love to hear
your guys' reactions to this story so make sure to use the hashtag dark history so I can follow
along. Join me over on my YouTube where you can watch these episodes on Thursday after the podcast
airs and also catch my murder mystery makeup which drops every Monday. I hope you have a wonderful rest of your day.
You make good choices and I'll be talking to you next week.
Goodbye.
Dark History is an audio boom original.
This podcast is executive produced by Bailey Sarian, Kim Jacobs, Jr. McNeely from Three
Arts, Ed Simpson and Claire Turner from Wilhaust, DNA.
Hey!
Produced by Lexi Kiven, research provided by Ramona Kivitt, writers, Jed Bookout, Joysk
Vuzo and Kim Yegid, edited by Jim Lucey and shot by Tafazwa Nemirundwey.
Special thank you to our historical consultant, Walt Odets.
And I'm your host, Bailey Sarian.
Goodbye.