June 9, 2023 • 55 mins
A new coalition of AIDS activists takes on the American medical establishment, pushing for access to clinical trials and experimental drugs.
You can find a list of books, articles, and documentaries we used in our research at bit.ly/fiascopod
If you like this series, mark your calendars: a new season of Fiasco is coming July 27, 2023, exclusively on Audible. Fiasco: Vigilante tells the story of a shooting that took place in 1984 on the New York City subway, leaving four Bronx teenagers gravely wounded and turning a man named Bernie Goetz into a national folk hero. Fiasco: Vigilante offers a panoramic but intimate view of how this era-defining story unfolded, giving voice for the first time to key players, and immersing listeners in the gritty, paranoid world of ’80s New York City. Listen to the trailer now at adbl.co/vigilante, only on Audible.
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Transcript
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 from
a 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):
Everything I'm reading Everyone age dies.
Speaker 3 (01:16):
We had no other resources but ourselves.
Speaker 1 (01:18):
There was growing sentiment in the White House that Reagan
should deliver a major address to the nation about AIDS.
The President gave his first major speech on the subject tonight,
one that drew both cheers and jeers.
Speaker 4 (01:28):
Demonstrators outside marched in memory of those who died of
AIDS and called for more research money.
Speaker 5 (01:34):
We got them.
Speaker 6 (01:43):
Jeff died on February eleventh, nineteen eighty six. I remember
it was the middle of a snowstorm, this huge blizzard
in New York, and Jeff died in asleep, and I
woke up in bed and found him dead next to me.
Speaker 1 (02:02):
Robert Vasquez Pacheco and his boyfriend Jeff lived together on
the Upper West Side of Manhattan. Vasquet Pacheco was an artist.
He was twenty nine when Jeff died. Jeff was thirty four.
Speaker 2 (02:14):
You know, I shocked. I was crying, and.
Speaker 6 (02:18):
I had quit smoking about a year before, and I
was sitting on the bed.
Speaker 2 (02:23):
I was actually clutching his foot.
Speaker 6 (02:25):
I was sobbing, and I was holding his foot and
I thought, you know what, I have to go get
some cigarettes.
Speaker 2 (02:31):
I'm not going to get through this. I get cigarettes.
Speaker 6 (02:34):
And so I walked out of the apartment and walked
into this blizzard. And as I walk out, I see
people on Columbus Avenue on skis well, you know, going
down Columbus Avenue, and I thought, this is too fucking surreal,
and you know, picked up cigarettes and then came back
up and then I called nine one one and my
(02:55):
friends and everything else.
Speaker 1 (03:03):
Vasquez Pacheco had been taking care of Jeff for more
than four years at this point. Jeff had gotten sick
back in nineteen eighty one, before anyone knew what AIDS
was or how it was spread. According to Vasquez Pacheco,
even hospital staff treated Jeff like a pariah.
Speaker 6 (03:19):
So he would be in the hospital, they'd put him
in an isolation room, and then the orderlies would leave
trays the food for him on the floor outside of
the room. And the fact that they couldn't even walk
in to give him the food, but they left it
out there without even notifying him that the meal had
you know, it was horrible. So I saw the way
he was treated by people that were supposed to be
(03:43):
helping him.
Speaker 1 (03:46):
As Jeff underwent chemotherapy for his Capaci sarcoma, it was
up to Vasquez Pacheco to keep him comfortable.
Speaker 6 (03:53):
We did a bunch of things. I got Jeff to
get into acupuncture. I introduced Jeff to marijuana because he
was on chemo. So it was all sort of a
struggle to see how we could do this and how
we could get through it and slowly start watching other
people dealing with it.
Speaker 1 (04:13):
After Jeff died, fast Cast Pacheco wasn't just devastated, he
was also furious.
Speaker 2 (04:20):
What I was left with was.
Speaker 6 (04:24):
Equal parts sadness, this profound sadness of this loss, and
at the same time I was filled with this rage
because you know, this upheaval in this community that was
experienced so much loss, and it was so apparent, it
was visible that what was happening, and people weren't doing anything,
(04:47):
and people weren't saying anything, and people were ignoring it.
Speaker 2 (04:51):
So I was angry at everybody.
Speaker 1 (04:55):
In his grief, fastcast Pacheko joined what he described to
me as a conscient business raising group for gay men.
Their meetings took place at the Lesbian and Gay Community
Center in the West Village. One night, Vasquez Pacheco and
a friend were leaving the center after a meeting. As
they made their way out of the building, they had
to cut through a large room on the ground floor
(05:18):
that was full of people.
Speaker 6 (05:20):
I said, look at the amount of cute guys in
this room. What is this organization?
Speaker 2 (05:27):
And that's when we went, Oh, my god, it's an
AIDS organization.
Speaker 1 (05:30):
The group called themselves the Aid's Coalition to Unleash Power,
or act UP for short. They had started meeting in
March of nineteen eighty seven after the activist and writer
Larry Kramer gave an impassioned speech at the center calling
for the establishment of a radical new AIDS organization. Ever since,
the group had been getting together at the Lesbian and
(05:52):
Gay Community Center every Monday night. There was no official hierarchy. Instead,
the hundreds of people who showed up tried their best
to think and act as one. When Robert Vasquez Pacheco
passed through that act UP meeting, he saw a room
(06:12):
of people who seemed to be doing something about AIDS, and,
with Jeff's death still fresh in his mind, he decided
to join them.
Speaker 2 (06:21):
I was angry, I was pissed. My lover had just died.
Speaker 6 (06:25):
I was pissed, and I wanted someone to answer for it.
And I found a group of like minded men who
were just as pissed.
Speaker 5 (06:37):
As I was.
Speaker 1 (06:39):
I'm Leon Navak from Audible Originals. In prologue projects This
is Fiasco.
Speaker 7 (06:45):
Angry demonstrators managed to close down the Food and Drug
Administration today As.
Speaker 8 (06:49):
Fast as they could take one group off the streets,
another group sat down.
Speaker 5 (06:53):
They had signs, you know, fauci, you're killing us.
Speaker 9 (06:56):
You just say let the drug out, then disasters can occur.
Speaker 10 (06:59):
Drug sent about asis? What was the tance of living?
Speaker 6 (07:01):
People need medication now, ten years from now they'll be dead.
Speaker 1 (07:09):
In this episode, how act Up confronted the medical establishment
and demanded an urgent response to the AIDS crisis. The
problem that act UP was created to solve was that
six long years into the epidemic, there was still pretty
(07:31):
much nothing that doctors could do for people who had
AIDS or HIV.
Speaker 3 (07:36):
At the beginning, people with AIDS had no treatments, no
matter who they were.
Speaker 1 (07:39):
This is Sarah Schulman, a member of act UP and
the author of Let the Record Show, A History of
the organization.
Speaker 3 (07:46):
You could be Rock Hudson with access to the White
House and endless money, and you're still going to suffer
and die. Or you could be a homeless person using
drugs and you are still going to suffer and die.
Speaker 1 (07:59):
When HIV V was first identified in nineteen eighty four,
many believed that scientists would develop a vaccine fairly quickly,
the same way they had for other deadly viruses.
Speaker 4 (08:10):
The government says it hopes to develop a vaccine to
prevent AIDS.
Speaker 7 (08:13):
Development of a vaccine is at least two years away.
Speaker 1 (08:16):
But HIV proved to be uniquely complicated, as scientists would
later show the virus had the highest mutation rate of
any organism on record, which made an easy vaccine impossible.
Speaker 11 (08:30):
Doctors still have no way of fighting AIDS. That means
all they can do is hope they'll eventually find something
or some combination of things that will stomp the disease
in its tracks.
Speaker 1 (08:40):
In the absence of a vaccine, scientists had to think
of other ways to attack the virus. In the meantime,
people with AIDS resorted to home remedies like capsules of
powdered garlic, chautaqi mushrooms, and tree SAP. Then, in nineteen
eighty five, one pharmaceutical company started testing an AIDS drug
that showed promise in earth early human trials. The drug
(09:04):
was called AZT. It was originally developed back in the
nineteen sixties as a cancer treatment, and like many chemotherapy drugs,
it acted broadly on the body, destroying a variety of cells,
not just the ones it was meant to target. The
drug had been shelved by its manufacturer because it turned
out to be far too toxic for patients, but in
(09:26):
people with AIDS, AZT appeared to slow the progress of
the disease.
Speaker 11 (09:31):
What we hope to do is to suppress the virus
enough that we may attain every mission.
Speaker 12 (09:37):
I was very excited about the hope of getting something
that would help you maintain myself a little bit longer.
Speaker 1 (09:43):
AZT was the first sign of hope that AIDS could
be thwarted through medicine, and while no one was calling
it a cure, people allowed themselves to be optimistic.
Speaker 12 (09:53):
Marty is one of two hundred and sixty patients in
a nationwide study of a drug known as AZT.
Speaker 13 (10:00):
Very good when I came into the study, I feel
very good now.
Speaker 10 (10:03):
Whatever it is is working.
Speaker 1 (10:05):
For three but the side effects of AZT were brutal.
People participating in trials of the drug complained of fevers, migraine, headaches,
abdominal pain, and nausea. Almost half showed depleted bone marrow cells,
a majority developed anemia, and some required multiple blood transfusions. Still,
(10:26):
the early results on AZT looked promising enough that the
company producing it, Burrows Welcome, ended its clinical trials early,
and in nineteen eighty six, the FDA fast tracked the
drug's release to the public. The cost of AZT was
set at around ten thousand dollars a year, which at
the time made it the most expensive drug ever brought
(10:48):
to market.
Speaker 11 (10:49):
The drug has serious side effects and it is expensive,
but in announcing its release today, the Department of Health
and Human Services called it an important step.
Speaker 1 (10:59):
It so happened that AZT was approved right as act
UP was starting to take shape. From the beginning, members
of the organization were clear that, no matter how promising
the drug looked, they did not believe it would be enough.
Sarah Schulman again.
Speaker 3 (11:14):
The general tenor was that AZT was not the solution.
I think people thought that in certain quantities in combination
with other treatments, it could be beneficial for a certain
period of time, but AZT alone and especially at these
high doses, was not going to do what it claim
(11:37):
to do.
Speaker 1 (11:39):
At actup's first ever public protest, the group gathered on
Wall Street, where they condemned the exorbitant cost of AZT
and accused its manufacture of profiteering. Direct actions like the
Wall Street protest were at the core of actup's methodology.
They were usually staged with a kind of theatre flourish,
(12:01):
and they were almost always tied to a set of
specific demands. Mark Harrington saw a flyer for ACKed UP
about a year after that first protest. It was nineteen
eighty eight and Harrington was working part time at a
film archive in Chelsea.
Speaker 14 (12:20):
I was young and curious and fascinated and worried and
terrified and wanted to learn everything I could, And so
one Monday night I went to the act UP meeting
in the West Village, which was held every Monday at
seven o'clock, and I was just immediately overwhelmed by the beautiful,
powerful energy and solidarity and love in the room from
(12:44):
several generations of gay men, many lesbians, a lot of
straight women and very few of any straight men.
Speaker 1 (12:53):
By the time Harrington joined Act Up, the group had
already worked out a highly disciplined approach to staging protests.
One of their strategies was to get arrested in predetermined waves,
so that once the police rounded up one group of activists,
another would fill the gap, and then another one after that.
It meant the action would last longer and hopefully attract
(13:15):
more attention. In March of nineteen eighty eight, Act Up
organized an action on Wall Street to mark the group's
first anniversary. Harrington joined Wave three as a trainee.
Speaker 14 (13:34):
And we all sat down in an intersection in block
traffic for at least an hour, chanting and waving condoms
in the air.
Speaker 12 (13:42):
And I have been ignoring us all these years, and
the only way you get attention from them is to
hit them where it hurts, and in New York City,
of course, traffic hurts.
Speaker 14 (13:56):
I got arrested along with my fellow trainees, and we
were off to the races.
Speaker 5 (14:03):
As fast as they could.
Speaker 3 (14:03):
Take one group off the streets, another group sat down.
Speaker 13 (14:08):
When it was over, one hundred and five age demonstrators
took their curtain calls.
Speaker 2 (14:12):
And police buses on.
Speaker 14 (14:13):
The way to jail, and so I was instantly hooked.
Speaker 1 (14:28):
While protests like the Wall Street Action began to give
act UP a public profile, members working behind closed doors
put just as much effort into something less spectacular, educating
themselves and each other. Sarah Schulman again.
Speaker 3 (14:44):
When you would come into the meeting room, the first
thing you did was pass along the table and it
would be filled with handouts about all kinds of things,
about new medical investigations, about policies, about housing legislation, communications
from incarcerated people with AIDS, issues about mothers, I mean,
(15:07):
all kinds of information, and you would pick up every flyer.
Speaker 1 (15:11):
Act up's philosophy was that people with AIDS and their
allies needed an intimate understanding of what AIDS was, what
was being done about it, and what wasn't.
Speaker 3 (15:20):
There were regular teachings that you could attend. Whatever it
was that you wanted to find out about, you could
go to a teaching and the people who were experts
would give you information to read and they would explain
the basics.
Speaker 1 (15:35):
Mark Harrington, a self proclaimed science nerd, was drawn to
a study group organized by a subcommittee of act UP
called Treatment and Data.
Speaker 14 (15:44):
It was a small group of people that was led
by a pharmaceutical chemist named doctor iris Long, who had
somewhat randomly come across an act UP meeting and became
inspired by the issue and apply to her pharmaceutical knowledge
to helping us understand pharmacology and drug trials.
Speaker 1 (16:01):
With guidance from iris Long, members of Treatment and Data
started learning about the drug development process and formulating new
questions about which drugs were being tested and how they were,
essentially becoming amateur scientists.
Speaker 11 (16:16):
More than eighty AIDS treatments are being tested in about
one hundred and fifty studies in the US, according to
the FDA, and did several of these drugs that AIDS
activists want Immediate access to.
Speaker 1 (16:27):
The process for testing and approving potential new therapies for
AIDS ran through two parts of the federal bureaucracy. The
drug approval process was handled by the Food and Drug Administration,
where they reviewed drugs after they had gone through test
tube and animal studies. If the FDA gave the green light,
a drug could move into clinical trials in humans.
Speaker 11 (16:48):
After minimal study animal studies. The normal FDA approval process
has three phases. Phase three averages four years. The whole
process can take from two to ten years, more than eight.
Speaker 1 (17:00):
So that was the FDA. The other major component of
the drug development bureaucracy was the National Institutes of Health
the NIH, a sprawling agency made up of more than
two dozen federally funded research hubs. The part of NIH
responsible for developing new AIDS treatments was the National Institute
for Allergy and Infectious Disease.
Speaker 4 (17:22):
We turned now to the man who oversees all AIDS
treatment research for the federal government.
Speaker 1 (17:27):
The government official running this institute during the late nineteen
eighties was the same one who runs it today.
Speaker 4 (17:33):
He is doctor Anthony Fauci, director of the National Institute
of Allergy and Infectious Disease, a.
Speaker 1 (17:40):
Division of the National Mark Harrington, through his work with
act UP, would come to know Fauci personally.
Speaker 14 (17:46):
Tony took the HELM as the AIDS crisis was deepening,
and right as Congress began turning on the spigots of
money for AIDS research at the NIH.
Speaker 1 (17:56):
It was under pressure from Fauci that the White House
agreed in nineteen eighty six to give the NAH around
three hundred million dollars in AIDS funding. With that money,
Fauci was able to initiate research on several new drugs,
including AZT.
Speaker 5 (18:11):
At that point, I set up drug discovery units. I
began to build the clinical trial network.
Speaker 1 (18:20):
This is Fauci in an interview we did with him
this winter.
Speaker 5 (18:24):
Subsequent to that first initial infusion of money that we got.
The big challenge was going from a disease in which
you had no treatments at all except treating oppotunistic infections
and tumb is to being able to directly treat the virus.
Speaker 1 (18:43):
It's important to remember that at this time there was
no such thing as an emergency use authorization for a
drug the way there is now. So for a desperate population,
early clinical trials like the ones Fauci was overseeing were
the only way to get act to AIDS drugs, even
if they weren't yet proven to work. Many felt that
(19:05):
taking them was still better than doing nothing. But as
Mark Harrington and his peers saw firsthand, getting into the
trials was complicated, and some people were shut out of
them entirely.
Speaker 14 (19:18):
We would sometimes go to a hospital where a doctor
was running a clinical trial and demand to speak to
him and try to find out why nobody was enrolling
in his clinical trial because nobody knew about it and
its INTR criteria excluded people with a lot of AIDS
defining conditions.
Speaker 1 (19:36):
To understand why certain people were excluded from drug trials,
it helps to remember that AIDS is an umbrella term
for a variety of conditions that stem from the immune
system being destroyed by HIV. Different people experience different AIDS
defining conditions. Some of them you've heard about, like CAPESI sarcoma,
(19:56):
and numicistas pneumonia, but there are dozens of others, and
as Sarah Schulman told me, some AIDS defining conditions that
occurred primarily in women weren't included for years in the
CDC's official definition of the disease.
Speaker 3 (20:11):
The government had an official definition of AIDS that listed
what symptoms you had to have in order to get
an aid's diagnosis, and women were getting symptoms that were
not on the list, so that women were getting AIDS
and dying and never qualifying for benefits and not getting
(20:32):
access to experimental treatments. If women couldn't get into the trials,
the medication could ever be tested on them.
Speaker 1 (20:40):
In practice, drug trials were mostly populated by white men
and few, if any women or people of color. On
top of that, participating in a clinical trial often required
patients to give up the medications they were already using
to treat their symptoms.
Speaker 3 (20:56):
In some trials, people were asked to give up a
medication that kept them from going so that they could
get a medication that would keep them from getting demented.
Like human beings, should not be put in a position
to have to make decisions like that so that science
can have clean data.
Speaker 1 (21:12):
In a vacuum. It makes sense to want to test
a drug under conditions that allow you to isolate its effect.
Any extra variable or interference from other treatments can make
it harder to achieve that ideal.
Speaker 5 (21:25):
Generally, the strict protocols that had been serving the biomedical
and clinical research community well for decades of having highly
controlled clinical trials, which now retrospectively, we see that it
was not ideally suited to the very special circumstances of HIV.
Speaker 1 (21:51):
Fauci, who was never press shy, became the face of
the federal government's efforts on AIDS. This meant answering charges
that he and agency we're moving too slowly. Here's Fauci
being interviewed on PBS in nineteen eighty six.
Speaker 4 (22:06):
Do you ever have any feelings of remorse of regret
that the system works the way it does.
Speaker 9 (22:13):
It certainly is very difficult to see so many young
men suffer and die when we don't have a treatment.
That is the most powerful impetus for us. As contradictory
as it made sound to do the study in as
scientifically a sound way as possible, so.
Speaker 1 (22:28):
That Fauci tried to explain that there were good reasons
the system was set up the way. It was really
concerned that if scientists started cutting corners and rushing drugs
to market that hadn't been rigorously tested, it would only
make things worse.
Speaker 9 (22:41):
Because trying at this point to say, well, we're really
concerned about the patients who have the disease, now which
we are in fact quite concerned, let's modify the scientific
integrity of the study. The real shame and tragedy will
be five years down the pike if because of that compromwise,
we still don't have an agent that's safe and effectively
because we compromised our method of testing it, that would
(23:03):
be the real tragedy.
Speaker 1 (23:05):
Robert Vasquez Pacheco saw a different tragedy. To him, it
appeared the system just wasn't set up to deal with
a new disease that gave most people just eighteen months
to live.
Speaker 6 (23:17):
The reality was that the drug approval process could take
upwards of fifteen years, and so we said, you guys
have to change that process.
Speaker 2 (23:29):
People need medication.
Speaker 6 (23:32):
Now now, not ten years from now.
Speaker 2 (23:37):
They'll be dead.
Speaker 1 (23:46):
Members of act UP had come to believe there were
fundamental problems with the drug development process. In the fall
of nineteen eighty eight, they channeled their outrage into their
biggest public action yet, and.
Speaker 14 (23:58):
So ACTUP was trying to figure out what kind of
national action we wanted to do to kind of heighten
our message in whether it should be like, say, at
the White House or at the mall or somewhere else.
Speaker 11 (24:09):
Now.
Speaker 3 (24:09):
Historically, progressive movements had always chosen symbolic objects like the
White House or the Capitol, but in this case, one
of actup's leaders realized that we should be picking actual obstacles,
not symbolic ones, and propose that the action be in Rockville, Maryland,
at the FDA.
Speaker 1 (24:31):
On October eleventh, nineteen eighty eight, more than a thousand
act UP members arrived at the FDA's campus in Rockville, Maryland.
Many carried signs in the shape of tombstones decorated with
phrases like azy T Isn't enough and killed by the FDA.
Speaker 15 (24:48):
Thank you all for coming.
Speaker 12 (24:49):
You are witnessing the largest demonstration ever in front of
the Food and Drug Administration.
Speaker 1 (24:55):
Some protesters came wearing white lab coats and gloves covered
in red paint to symbolize that the FDA had blood
on its hands. The national media sent reporters to Rockville
to witness act up in action.
Speaker 8 (25:12):
Ronald Reagan was hoisted in effigy this morning as hundreds
of AIDS activists descended on the Food and Drug Administration,
determined to shut it down the charge that while people
are dying, FDA delays the demand that the FDA speed
up approval of drugs that show any promise against AIDS.
Speaker 1 (25:31):
Robert Vasquez Pacheco was at the protest serving as a marshal,
a peacekeeper essentially.
Speaker 6 (25:37):
So marshals were the ones who were in charge of
sort of crowd safety. You would be patrolling the lines
to make sure that people were keeping calm, or like
please do not go up into the cops face, you know,
and scream at him.
Speaker 1 (25:50):
There were about three hundred and fifty police officers on
the scene. Basquez Pacheco was wary.
Speaker 2 (25:56):
Well.
Speaker 6 (25:56):
I had told people I do not get arrested at demonstrations.
I said, I am a Puerto Rican. We disappear into
the prison system, you know, so I am not going
to get arrested. Someone got a little carried away with
themselves and broke a door, a glass door, trying to
(26:18):
get in, and immediately the cops descended on it. Of course,
myself and some marshalls showed up, you know as well
to like, okay, pull people back, you know, keep people safe,
pull people back, and the cops, you know, just started
arresting people. And I remember what cop just looked at
looked at me, said take that one because I had
a walkie talkie.
Speaker 1 (26:38):
Vazquez Pacheco and all the others who were arrested in
Rockville were taken by bus to the Montgomery County Police Academy,
where the police had set up their gym as a
temporary detention center. Eventually they let everyone go. The protest
(26:59):
at the FDA was a success. Act Up had gathered
AIDS activists from around the country in a common cause,
and they had made their demands literally front page news.
Speaker 7 (27:10):
Angry demonstrators managed to close down the Food and Drug
Administration Today, they accused the agency under President Reagan of
wasting time in the war against ADS.
Speaker 6 (27:19):
That sort of changed everything when they said, oh, wait
a minute, you know, these fagots are pissed off and
they're not playing around.
Speaker 1 (27:28):
In June of nineteen eighty nine, about nine months after
the protest in Rockville, the FDA approved two drugs to
treat people with AIDS, one for numisistus pneumonia and one
for cytomegalovirus retinitis, a condition that left many AIDS patients blind.
Both were drugs developed for other purposes that act UP
(27:48):
had been demanding access to. According to Mark Harrington, the
fact that they were finally approved was a sign that
the government was starting to listen.
Speaker 14 (27:57):
The FDA began to think about how to do things
differently because they realized that the traditional way of doing
studies was too slow for a pandemic, and the traditional
way of doing very restrictive enrollment criteria was not only
too restrictive for a pandemic like AIDS, but was actually
too restrictive period.
Speaker 1 (28:16):
It was around this time that AIDS activists began to
rally around a new slogan, Drugs into Bodies. It reflected
a mix of hope and desperation, suggesting that if only
scientists could try enough different drugs, one of them would
surely turn out to work. In the meantime, anything was
(28:37):
better than nothing.
Speaker 10 (28:38):
At the time, roughly fifty percent of gay men in
New York City were infected with HIV.
Speaker 1 (28:46):
This is Garan's Frankie Ruda, who joined Act Up in
nineteen eighty eight at the age of seventeen.
Speaker 10 (28:53):
I mean, just imagine if half the people you went
to high school with were suddenly told that they were
probably gonna die in the next three to seven years.
Drugs and the bodies was a chance at living. It
was pretty simple.
Speaker 1 (29:08):
Nobody an act Up seemed to pay much attention to
Frankie Ruda's age. She was outspoken and enthusiastic, and the
fact that she was a teenager probably just made her
a better activist.
Speaker 10 (29:20):
I had two years of high school and a GD
like you know, but I was I had very high
reading skills and apparently an unbounded sense of confidence, so
or at least determination. You know, I wasn't doing anything
in a calculated way. Nobody was doing anything in a
particularly calculated way. It was just this urgent, urgent, urgent need.
(29:45):
And the only question ask of anybody is not like
who are you or how educated you are, or like
do you have money or do you have the right
to do this? The only question act up asked of
anybody is can you help? And if you could help,
then people were really happy to work with you on anything.
Speaker 1 (30:05):
Like Mark Harrington, Frankie Ruda was drawn to the Treatment
and Data Subcommittee. There, she learned about drugs that seemed
like they might be worth testing on AIDS patients, including
some that were approved in other countries but weren't available
in the United States. At one point, Frankie Ruda started
working with a group that was importing such drugs and
setting up underground trials in New York.
Speaker 10 (30:26):
I was part of the team that decided which medications
we would import in this kind of legal gray area.
So the idea there was that, you know, we would
do sort of citizen science research, read the medical literature,
talk to doctors, talk to manufacturers, find out everything that
was known about how a medication and a pathogen might
(30:47):
respond to each other. There was a category we called
what the hell drugs, where we knew that they were
extremely safe, we had no idea if they really worked,
and we were like, well, can hurt might help? What
the hell you know?
Speaker 1 (31:03):
But identifying potential drugs was only part of the equation.
Making them accessible to people who couldn't wait around for
them to be approved was just as important, and during
the summer of nineteen eighty nine, act up rallied around
an idea known as parallel track drug trials. The pitch
was that scientists should conduct their clinical trials as rigorously
(31:24):
as they wanted, but also simultaneously, they should make experimental
drugs more widely available to people who had the disease.
To Harrington and his colleagues, parallel track seemed like a
no brainer.
Speaker 14 (31:37):
Even just from the nine months that it was from
the Sea's control of the FDA. Our understanding and knowledge
about science had grown exponentially in that period of time,
and our demands were much more precise and much more doable.
Speaker 1 (31:51):
To get parallel track in front of the scientific community,
Harrington and the others from act up crashed a medical
conference in Montreal presented their proposal to a group of
scientists that included Anthony Fauci. In addition to parallel track,
act UP sketched out an entire research agenda for which
drugs to test and in what order.
Speaker 14 (32:12):
We rolled out the same demands with each one of
them that we want this parallel track research into the
operat news take infections and cancers, research to allow people
of color, women, drug users, and children into AID clinical trials,
and we want it now.
Speaker 1 (32:27):
Fauci at least was impressed.
Speaker 5 (32:29):
They trained themselves literally to become scientists without I mean,
they were lawyers, they were stockbrokers, they were theatrical people,
and yet they studied the situation and came up with
a research genda that was really very very well founded,
(32:50):
an extraordinary and I read it and it was like, wow,
we got some really serious partners here.
Speaker 1 (33:00):
A few weeks later, Fauci was in San Francisco where
he met an aid's patient who pressed him further on
the need for parallel track.
Speaker 5 (33:07):
It was articulated to me by a person who was
lying in bed, who was on AST, whose virus was controlled,
but it was still very sick.
Speaker 1 (33:17):
The patient had a condition that was making him go blind.
A drug called gencyclovir could prevent him from losing his sight,
but he wasn't allowed to take it at the same
time as AZT if he wanted to stay in the trial.
Speaker 5 (33:31):
And I remember when I went to the person's room
down in the Castro in San Francisco, and I sat
down by his bedside with his partner, and he looked
at me and he said, doctor Fauci, do you see
what the government is doing. You're giving me a choice.
I could either take AZT and not gan cyclovir and
go blind, or I can take gan cyclovir and maintain
(33:53):
my vision and die. What kind of choice is that?
And it became eminently clear to me that we just
were not getting it.
Speaker 1 (34:03):
The next day, Fauci publicly endorsed Parallel Track during a
town hall meeting.
Speaker 5 (34:08):
That's when I decided that I would try and with them,
help to change the system. It wasn't easy for me, because,
on the one hand, there were still those among the
activists who still didn't think we were doing things well
(34:29):
enough and quickly enough. And there were many among the
scientific community who thought I was caving in to the activists.
But I knew deep down that I was doing the
right thing.
Speaker 1 (34:51):
Even as Fauci grew more sympathetic to Actup's demands, many
activists continued to regard him with suspicion.
Speaker 13 (34:58):
We're with treatment in data, with many, and we're going
to facilitate this meeting as soon as doctor and m Fauci.
Speaker 1 (35:05):
In the fall of nineteen eighty nine, Fauci arranged to
attend an act UP meeting in New York to be.
Speaker 13 (35:11):
Respectful of people who were talking, that they're not be
cheering or hissing or booing. That we really tried to
use this meeting as let's call it a working confrontation.
Speaker 5 (35:23):
I went down to the Gay and Lesbian Community Center
down in Greenwich Village literally by myself, I think I
had one of my staff was with me, and got
in the room where there were about one hundred act
UP people who were bristling within many respects, anger and
being upset with how the government was acting.
Speaker 14 (35:44):
Tony came up to a meeting of Treatment and Data
and submitted to basically three hours of tough questions from us,
including accusations of genocide.
Speaker 13 (35:54):
Hey, doctor Fauci, I don't question you about where your
moral commitment did I'm talking about the practicality of how
we get things done.
Speaker 6 (36:04):
You are in a spot which people say, what the
hell is he doing?
Speaker 5 (36:08):
And I said, okay, I'm here, I'm with you, I'm
sitting down among you. I don't have any body sticking
up for me or protecting me. Let's hear what you
have to say.
Speaker 10 (36:19):
What what we're.
Speaker 15 (36:20):
Saying is that people, including yourself, in some levels, must
have one their conscience. These deaths why there is a
more aggressive movement to make sure that the next opportunistic
infections aren't dealt with more effectively and aggressive mood.
Speaker 1 (36:36):
The meeting was quite heavy on the science. Much of
the discussion revolved around which drugs should be tested first
and how Fauci could more effectively use his political muscle.
Fauci agreed with some of the criticism and conceded that
the medical establishment could do better.
Speaker 16 (36:52):
To you, I agree with you completely.
Speaker 5 (36:54):
I told you then, I'll tell you now. Things off better.
Speaker 16 (36:56):
We could send you a list if you don't already
have it, of all of the activities.
Speaker 5 (37:01):
That are going on, but it isn't enough. We obviously still.
Speaker 10 (37:04):
Need to do more.
Speaker 1 (37:05):
At other points, Fauci aggressively corrected what act UP members
were saying to him.
Speaker 5 (37:10):
Now, that's wrong, but you keep saying I'm wrong.
Speaker 7 (37:15):
You see, this is.
Speaker 2 (37:16):
What I mean.
Speaker 5 (37:16):
You make a presumption on them.
Speaker 16 (37:18):
Tell you why you're absolutely wrong.
Speaker 1 (37:19):
You see, in those moments, Fauci could come off as
kind of patronizing.
Speaker 16 (37:24):
I think that you may be naive and understanding how
you can get things done.
Speaker 6 (37:28):
In Washington.
Speaker 16 (37:30):
You don't get many shots of going out like the
lone range, and you get one shot at get something done.
Speaker 14 (37:37):
If you do that, that's the name of the game.
Speaker 1 (37:42):
Despite the tensions that flared up at that first meeting
in New York, over the coming months, Fauci and some
of his colleagues started hosting members of the Treatment and
Data Group in Washington. Both sides remember the experience as
something of a culture clash.
Speaker 5 (37:57):
We learned a lot from them, and they learned a
lot from us. But it wasn't always a very smooth road.
Speaker 10 (38:05):
I remember going to meetings in Washington, DC and like
just getting up to the microphone and asking questions, you know,
wearing my like five dollars miniskirt that I got at
a street fair in some parking lot in Manhattan, you know,
and like they just looked at us, like, who are
you people? It felt like we were from a totally
different world.
Speaker 1 (38:25):
In many ways, they were. For years now, the activists
have been operating in the epicenter of the epidemic. Fauci
and his colleagues, on the other hand, worked in bucolic
suburban communities, far away from the mass death that surrounded
act UP members in New York. By confronting the scientists directly,
act UP was forcing them to perceive the crisis more
(38:48):
clearly and vividly.
Speaker 14 (38:51):
Once the researchers began to know living people with AIDS,
it changed people like Tony Fauci when they began to
meet with us not just as patients but as activists
and antagonists and people who wanted to get them to
do the right thing. And then they would lie awake
at night and toss and turn and think about it
(39:11):
and realize that in some cases we were right. And
meanwhile we would be tossing and turning back in New
York after meeting with them, and we would sometimes learn
things from them that we hadn't thought of before, And
we began going from having an argument to having a conversation,
and from having a conversation to having a partnership.
Speaker 1 (39:41):
The new found alliance between Fauci and the Treatment and
Data Group did not mean that act UP was done
protesting him. There was one issue in particular that the
activists were focused on.
Speaker 14 (39:52):
We started telling Tony that we wanted him to get
us invited to the meeting of the NIH funded clinical
trials network, which was called the AIDS Clinical Trial Group.
Speaker 1 (40:02):
The AIDS Clinical Trial Group at NIH determined which treatments
would be studied, and when activists insisted that their new
partnership with Fauci was little more than lip service until
people with AIDS were part of the group and included
in making those decisions.
Speaker 14 (40:18):
And then he said, yeah, you can come, but the
researchers really don't want you to come, so maybe you
should wait until the next meeting. And we were like, well, no,
that's what you told us about the last meeting. You
told us to hold on.
Speaker 1 (40:30):
And so act UP started organizing another direct action. This
one would be called storm the NIH. The plan was
for hundreds of protesters to flood Fauci's home turf and
demand more say in how the federal government set its
research priorities. The group wanted to give Fauci a chance
to respond to their demands before the protest actually happened,
(40:53):
so Mark Harrington arranged for a meeting along with another
act UP member, Peter Staley.
Speaker 14 (40:58):
Peter had the bright idea of asking Fauci for a dinner.
Speaker 1 (41:06):
Fauci invited the activists to the home of his deputy director,
doctor Jim Hill.
Speaker 14 (41:11):
Doctor Jim Hill was a good host and cooked a
good chicken and port a nice glass of wine. And
at that time I was a chain smoker and he
allowed in chain smoking. It was crazy. We're in doctor
Hill's living room and Tony's like, so, why are you
guys here? What brings you down?
Speaker 5 (41:29):
Mark Carrington and Peter Staley said, you know, we still
need more. We want more of the clinical trials, we
want more representation. You're doing great, we love you, but
we still are going to storm the NIH And I said,
oh my goodness, you know, be careful. That might put
us back a bit.
Speaker 14 (41:48):
Tony's like, well, why we're talking. We've been talking for
months and Peter's like, yeah, but you haven't given in
to any of our demands since Parallel Track. You're not
letting people with AIDS and their allies to go to
those meetings.
Speaker 5 (42:01):
He says, no, it's nothing personal against you, but we've
got to storm the NIH. We've got more that we've
got to do.
Speaker 14 (42:08):
We were like, we'll call off the demo if you'd
given to all our demands, but for now, we're just
going to go forward.
Speaker 1 (42:14):
Fauci did not give in to their demands. As much
as his relationship with the activists had deepened, they were
still on opposite sides of a line.
Speaker 5 (42:23):
Even though we became colleagues and in some respects friends,
They would not let that relationship deter them from pushing
even more for what they felt they needed.
Speaker 1 (42:48):
On the morning of May twenty first, nineteen ninety, activists
assembled at a metro station near the NIH. Then they
marched to campus, a quiet, leafy collection of brick buildings
and concrete office blocks.
Speaker 2 (43:01):
People a night won't.
Speaker 9 (43:02):
Be quiet, Oh my drugs treatment.
Speaker 2 (43:05):
Or riot people.
Speaker 1 (43:06):
At one point, an air horn started blasting every twelve
minutes as a memorial to all the people dying of
AIDS on a daily basis.
Speaker 10 (43:23):
This isn't a syche of your molecule.
Speaker 17 (43:24):
It's representing that there's treatments out there that the NIH
isn't testing. They're not testing.
Speaker 1 (43:28):
This is Garan's Frankie Ruda in footage from the protest,
and there's a lot.
Speaker 17 (43:32):
Of different treatments that they're not studying, and they're not
studying them in all populations when they are studying them.
Speaker 1 (43:37):
Frankie Ruda did not hesitate to call Fauci out by name.
Speaker 10 (43:41):
And that building down that way.
Speaker 17 (43:42):
Dr Anthony Fauci and a lot of other hot shot
scientists are having conference deciding the research priorities for the
National Institutes of Valerine and Infectice Diseases. We're down here
because we think we should be deciding the research priorities
for the National Institute of Allergy and in Texted Diseases,
because these are the people who are literally the disease.
These are the people who know what's going on because
they're dealing with it every day. Those people don't they're
(44:02):
fascinated by this little buyers and they don't give a
fuck about the people who are living.
Speaker 10 (44:06):
With thee.
Speaker 17 (44:08):
For dying for right.
Speaker 1 (44:12):
Frankie Ruda was not the only one at the protest
who took direct aim at Fauci. One guy carried a
sign that said doctor Fauci you are killing us. Another
said Anthony Fauci, I piss on you.
Speaker 5 (44:24):
They had my head on a spike. It was it
was really very you know, in some respects poignant and moving,
in some respects almost entertaining.
Speaker 1 (44:36):
Stormed the NIH encapsulated the inside outside strategy that act
up had now perfected. While some members worked on Fauci
and his colleagues from close range, others ratcheted up the
pressure publicly. In some cases it was the same activists
who were doing both.
Speaker 5 (44:55):
Pete promised me Peter Staley that he was going to
be so outland thish he was going to get arrested.
And when when they finally did storm the NIH, he
climbed up on the overhanging panopy of my building and
I saw that the police was starting to get a
(45:16):
little rough, so they grabbed Peter. And I saw that,
and I was afraid they were going to hurt him,
so I ran down. I was looking at it out
my window, and I ran down to the ground floor,
and just as I got to the ground floor, Peter
was in handcuffs being led away by the police. And
Peter looked up and said, with a big smile in
(45:36):
his face, he said, see Tony, I told you I
was going to get arrested, and the police looked at
us like, of both of these guys crazy.
Speaker 2 (45:45):
Here they are.
Speaker 5 (45:45):
Storming the building and they look like they're good friends.
Speaker 1 (45:57):
One month after storm the nih In Gue of nineteen ninety,
Anthony Fauci gave a speech at the sixth International AIDS
Conference in San Francisco.
Speaker 10 (46:06):
It is a.
Speaker 16 (46:07):
Distinct honor and a pleasure to participate in the closing
ceremonies of the sixth International Congress on AIDS and to
share with you my perspective on AIDS research.
Speaker 1 (46:16):
Fauci spent much of his allotted time giving his perspective
on what the new decade would mean for the AIDS
epidemic projection. Then he turned his attention to the relationship
between scientists and activists. Activists bring a very special insight
into the way that we design our scientific approaches. Together,
we are a formidable force with a common goal. Fauci
(46:39):
wanted the activists and attendance to come away with a
clear message.
Speaker 5 (46:43):
I don't agree with everything you're doing, but you need
to understand that we are all together in this. The
scientific community is not your enemy. The scientific community cares
about you. The scientific community has devoted everything that they
do to try and protect you and get your lives
back to some form of normality with the proper drugs.
(47:06):
And it was a real coming together of a realization
that we were all in this together.
Speaker 16 (47:12):
This is the way we serve, but we must never
lose sight of the fact that the people whom we
serve are the HIV infected people throughout the world.
Speaker 1 (47:21):
Thank you.
Speaker 14 (47:27):
Basically, Fauci came up to us and he told us
that he was giving in to all of our demands,
and he was telling the researchers that they had to
do what we asked, and he followed up on that.
Speaker 1 (47:38):
In the months after the conference, it was announced that
people with AIDS would finally be included in the clinical
trials group, positioning them to exert real influence on its
research agenda. Fauci had made good on his word.
Speaker 14 (47:52):
So we got to see him at the height of
his defensiveness and we got to see him change and
that was a wonderful thing. And ever since then, people
with AIDS and their allies and advocates have been part
of the AIDS research clinical trials system and not just
beating up on the outside, but actually helping to shape
(48:13):
it from the inside.
Speaker 1 (48:17):
Harrington's happiness wasn't shared by every member of act UP.
Sarah Schulman, for example, was unimpressed by how slowly Fauci
had come around and what it had taken to change
his mind.
Speaker 3 (48:29):
He was brought around by a combination of pressure that
made him uncomfortable from people he did not understand, like
poor people or women, and a kind of collegiality from
a certain kind of man that he eventually was able
to identify with.
Speaker 1 (48:48):
As Garantz Frankie Ruda told me, many people outside of
Treatment and Data were starting to get antsy about how
close some of their fellow activists were getting to the
people in power.
Speaker 10 (48:58):
People started having arguments about whether or not to continue
meeting with scientists. There was a proposal for a moratorium
on meetings for six months, and I remember very vividly
being at the general meeting where that was discussed, where
someone got up and said, it's only for six months,
it's not like it's the rest of your life, and
someone else said, it might actually be the rest of
my life.
Speaker 1 (49:18):
Meanwhile, some members of act UP had started conceiving of
the organization as being about more than just AIDS activism.
They wanted it to be a vehicle for upending the
entire American healthcare system and tackling what they considered to
be the broader systemic issues, of which AIDS was just
one component.
Speaker 10 (49:36):
The question arose whether or not act UP was a
more general left wing group or whether it was specifically
an HIV organization. And that's I think where things started
to get tense.
Speaker 1 (49:49):
Increasingly, treatment and data members felt like they were operating
independently of their colleagues.
Speaker 14 (49:55):
Instead of, you know, going to demos, we were now
going to scientific meetings and helping to design produc calls,
and so the old famous inside outside strategy where you
negotiate but you also demonstrate. The balance became more going
to science meetings and less to demonstrations, and in retrospect,
dot created tension.
Speaker 1 (50:18):
In the years since its founding, act UP had managed
to get a staggering number of their demands met. They
had won changes to the drug testing and approval process.
They had secured a seat at the table for people
with AIDS when it came to decision making around research funding.
They had secured compassionate use approval for drugs to treat
AIDS related blindness and numicistis pneumonia. Here again is Robert
(50:43):
Vasquez Pacheco.
Speaker 6 (50:44):
We changed the ways research was done in the United
States and brought an element of compassion. I mean that
the process became humanized. We got drugs into bodies.
Speaker 1 (50:59):
But despite their victories, everyone we talked to for this
episode was quick to temper their excitement about what act
UP had achieved. By the end of the nineteen eighties,
for all their efforts, there was still no drug that
could save people from dying of AIDS.
Speaker 14 (51:15):
We began to realize that this thing of hoping for
like a magic bullet, that you know, we would all
be activists for two or three years, and then the
cure would come, the vaccine would come, and we would
all go back to our lives wasn't going to.
Speaker 10 (51:27):
Happenzt forestalled things for a while for some who took
it and were able to take it and tolerate it.
Some people were able to get access to drugs that
prevented opportunistic infections, or they were just were lucky enough
to have immune systems that declined more slowly. But a
lot of people didn't, and just the pace of the
dying picked up.
Speaker 6 (51:45):
This was an epidemic that kept growing, so it wasn't
as if it reached a plateau. We kept seeing more
and more people getting sick.
Speaker 3 (51:53):
It was very hard to be so young and watch
your friends suffer and die on our regular basis aids
is a terrible death. And to watch people in their
twenties and thirties become demented and blind and covered in
skin cancer, I mean, it was horrible.
Speaker 1 (52:15):
The group never completely folded, but around nineteen ninety one
a fallo period started, during which dozens, if not hundreds,
of act UP members burned out and quit. Robert Basquez
Pacheco moved to Philadelphia and tried to focus on his
own life. He still had faith that something eventually would work,
(52:35):
but he also thought about all the people, like his
boyfriend Jeff, who would already be gone when that day arrived.
Speaker 6 (52:41):
And of course what struck me was, oh, God, you
know they're going to find something, and it's going to
be too late for so many people, for so many people.
Speaker 10 (53:23):
Takes a few months.
Speaker 2 (53:25):
But on Bones here for Strong, we tell all.
Speaker 14 (53:31):
Our school friends a sign all the cast in the playground.
Speaker 1 (53:39):
On the next episode of Fiasco, the Tide begins to
turn as a new class of drugs shows promise against HIV.
Speaker 6 (53:47):
The fact that it happened in one patient it tells
us for the first time that it's actually possible.
Speaker 1 (53:53):
Fiasco is presented by Audible Originals and Prologue Projects. The
show is produced by Andrew Parsons, Sam Graham Felson, Madeline Kaplan,
Ulla Kulpa, and me Leon Nafock. Our researcher is Francis Carr.
Editorial support from Jessica Miller and Norah Waswaz, Archival research
by Michelle Sullivan. This season's score is composed by Edith Mudge.
(54:17):
Additional music by Nick Sylvester of God Mode, Joel Saint,
Julian and Dan English, Noah Hackt, and Joe Valley. Our
theme song is by Spatial Relations. Our credit song this
week is the Place Where He Inserted the Blade by
Black Country New Road Music licensing courtesy of Anthony Roman.
Audio mixed by Erica Wong with additional support from Selina Urabe.
(54:41):
Our artwork is designed by Teddy Blanks at Chips and Y.
David Blum is the editor in chief of Audible Originals.
Mike Charzik is the vice president of Audible Studios. Zach
Ross is head of acquisition and development for Audible. Thanks
to Chris Roby, Susie Lichtenberg, and the team at Radio
Lab and Peter Yassi. Special thanks to David France, Bill
(55:03):
Balman and Thomas Knauglis for sharing with us the audio
of Fauci's meeting with act UP. Thank you for listening,
and see you back here next week for Episode seven.
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 from
a 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):
Everything I'm reading Everyone age dies.
Speaker 3 (01:16):
We had no other resources but ourselves.
Speaker 1 (01:18):
There was growing sentiment in the White House that Reagan
should deliver a major address to the nation about AIDS.
The President gave his first major speech on the subject tonight,
one that drew both cheers and jeers.
Speaker 4 (01:28):
Demonstrators outside marched in memory of those who died of
AIDS and called for more research money.
Speaker 5 (01:34):
We got them.
Speaker 6 (01:43):
Jeff died on February eleventh, nineteen eighty six. I remember
it was the middle of a snowstorm, this huge blizzard
in New York, and Jeff died in asleep, and I
woke up in bed and found him dead next to me.
Speaker 1 (02:02):
Robert Vasquez Pacheco and his boyfriend Jeff lived together on
the Upper West Side of Manhattan. Vasquet Pacheco was an artist.
He was twenty nine when Jeff died. Jeff was thirty four.
Speaker 2 (02:14):
You know, I shocked. I was crying, and.
Speaker 6 (02:18):
I had quit smoking about a year before, and I
was sitting on the bed.
Speaker 2 (02:23):
I was actually clutching his foot.
Speaker 6 (02:25):
I was sobbing, and I was holding his foot and
I thought, you know what, I have to go get
some cigarettes.
Speaker 2 (02:31):
I'm not going to get through this. I get cigarettes.
Speaker 6 (02:34):
And so I walked out of the apartment and walked
into this blizzard. And as I walk out, I see
people on Columbus Avenue on skis well, you know, going
down Columbus Avenue, and I thought, this is too fucking surreal,
and you know, picked up cigarettes and then came back
up and then I called nine one one and my
(02:55):
friends and everything else.
Speaker 1 (03:03):
Vasquez Pacheco had been taking care of Jeff for more
than four years at this point. Jeff had gotten sick
back in nineteen eighty one, before anyone knew what AIDS
was or how it was spread. According to Vasquez Pacheco,
even hospital staff treated Jeff like a pariah.
Speaker 6 (03:19):
So he would be in the hospital, they'd put him
in an isolation room, and then the orderlies would leave
trays the food for him on the floor outside of
the room. And the fact that they couldn't even walk
in to give him the food, but they left it
out there without even notifying him that the meal had
you know, it was horrible. So I saw the way
he was treated by people that were supposed to be
(03:43):
helping him.
Speaker 1 (03:46):
As Jeff underwent chemotherapy for his Capaci sarcoma, it was
up to Vasquez Pacheco to keep him comfortable.
Speaker 6 (03:53):
We did a bunch of things. I got Jeff to
get into acupuncture. I introduced Jeff to marijuana because he
was on chemo. So it was all sort of a
struggle to see how we could do this and how
we could get through it and slowly start watching other
people dealing with it.
Speaker 1 (04:13):
After Jeff died, fast Cast Pacheco wasn't just devastated, he
was also furious.
Speaker 2 (04:20):
What I was left with was.
Speaker 6 (04:24):
Equal parts sadness, this profound sadness of this loss, and
at the same time I was filled with this rage
because you know, this upheaval in this community that was
experienced so much loss, and it was so apparent, it
was visible that what was happening, and people weren't doing anything,
(04:47):
and people weren't saying anything, and people were ignoring it.
Speaker 2 (04:51):
So I was angry at everybody.
Speaker 1 (04:55):
In his grief, fastcast Pacheko joined what he described to
me as a conscient business raising group for gay men.
Their meetings took place at the Lesbian and Gay Community
Center in the West Village. One night, Vasquez Pacheco and
a friend were leaving the center after a meeting. As
they made their way out of the building, they had
to cut through a large room on the ground floor
(05:18):
that was full of people.
Speaker 6 (05:20):
I said, look at the amount of cute guys in
this room. What is this organization?
Speaker 2 (05:27):
And that's when we went, Oh, my god, it's an
AIDS organization.
Speaker 1 (05:30):
The group called themselves the Aid's Coalition to Unleash Power,
or act UP for short. They had started meeting in
March of nineteen eighty seven after the activist and writer
Larry Kramer gave an impassioned speech at the center calling
for the establishment of a radical new AIDS organization. Ever since,
the group had been getting together at the Lesbian and
(05:52):
Gay Community Center every Monday night. There was no official hierarchy. Instead,
the hundreds of people who showed up tried their best
to think and act as one. When Robert Vasquez Pacheco
passed through that act UP meeting, he saw a room
(06:12):
of people who seemed to be doing something about AIDS, and,
with Jeff's death still fresh in his mind, he decided
to join them.
Speaker 2 (06:21):
I was angry, I was pissed. My lover had just died.
Speaker 6 (06:25):
I was pissed, and I wanted someone to answer for it.
And I found a group of like minded men who
were just as pissed.
Speaker 5 (06:37):
As I was.
Speaker 1 (06:39):
I'm Leon Navak from Audible Originals. In prologue projects This
is Fiasco.
Speaker 7 (06:45):
Angry demonstrators managed to close down the Food and Drug
Administration today As.
Speaker 8 (06:49):
Fast as they could take one group off the streets,
another group sat down.
Speaker 5 (06:53):
They had signs, you know, fauci, you're killing us.
Speaker 9 (06:56):
You just say let the drug out, then disasters can occur.
Speaker 10 (06:59):
Drug sent about asis? What was the tance of living?
Speaker 6 (07:01):
People need medication now, ten years from now they'll be dead.
Speaker 1 (07:09):
In this episode, how act Up confronted the medical establishment
and demanded an urgent response to the AIDS crisis. The
problem that act UP was created to solve was that
six long years into the epidemic, there was still pretty
(07:31):
much nothing that doctors could do for people who had
AIDS or HIV.
Speaker 3 (07:36):
At the beginning, people with AIDS had no treatments, no
matter who they were.
Speaker 1 (07:39):
This is Sarah Schulman, a member of act UP and
the author of Let the Record Show, A History of
the organization.
Speaker 3 (07:46):
You could be Rock Hudson with access to the White
House and endless money, and you're still going to suffer
and die. Or you could be a homeless person using
drugs and you are still going to suffer and die.
Speaker 1 (07:59):
When HIV V was first identified in nineteen eighty four,
many believed that scientists would develop a vaccine fairly quickly,
the same way they had for other deadly viruses.
Speaker 4 (08:10):
The government says it hopes to develop a vaccine to
prevent AIDS.
Speaker 7 (08:13):
Development of a vaccine is at least two years away.
Speaker 1 (08:16):
But HIV proved to be uniquely complicated, as scientists would
later show the virus had the highest mutation rate of
any organism on record, which made an easy vaccine impossible.
Speaker 11 (08:30):
Doctors still have no way of fighting AIDS. That means
all they can do is hope they'll eventually find something
or some combination of things that will stomp the disease
in its tracks.
Speaker 1 (08:40):
In the absence of a vaccine, scientists had to think
of other ways to attack the virus. In the meantime,
people with AIDS resorted to home remedies like capsules of
powdered garlic, chautaqi mushrooms, and tree SAP. Then, in nineteen
eighty five, one pharmaceutical company started testing an AIDS drug
that showed promise in earth early human trials. The drug
(09:04):
was called AZT. It was originally developed back in the
nineteen sixties as a cancer treatment, and like many chemotherapy drugs,
it acted broadly on the body, destroying a variety of cells,
not just the ones it was meant to target. The
drug had been shelved by its manufacturer because it turned
out to be far too toxic for patients, but in
(09:26):
people with AIDS, AZT appeared to slow the progress of
the disease.
Speaker 11 (09:31):
What we hope to do is to suppress the virus
enough that we may attain every mission.
Speaker 12 (09:37):
I was very excited about the hope of getting something
that would help you maintain myself a little bit longer.
Speaker 1 (09:43):
AZT was the first sign of hope that AIDS could
be thwarted through medicine, and while no one was calling
it a cure, people allowed themselves to be optimistic.
Speaker 12 (09:53):
Marty is one of two hundred and sixty patients in
a nationwide study of a drug known as AZT.
Speaker 13 (10:00):
Very good when I came into the study, I feel
very good now.
Speaker 10 (10:03):
Whatever it is is working.
Speaker 1 (10:05):
For three but the side effects of AZT were brutal.
People participating in trials of the drug complained of fevers, migraine, headaches,
abdominal pain, and nausea. Almost half showed depleted bone marrow cells,
a majority developed anemia, and some required multiple blood transfusions. Still,
(10:26):
the early results on AZT looked promising enough that the
company producing it, Burrows Welcome, ended its clinical trials early,
and in nineteen eighty six, the FDA fast tracked the
drug's release to the public. The cost of AZT was
set at around ten thousand dollars a year, which at
the time made it the most expensive drug ever brought
(10:48):
to market.
Speaker 11 (10:49):
The drug has serious side effects and it is expensive,
but in announcing its release today, the Department of Health
and Human Services called it an important step.
Speaker 1 (10:59):
It so happened that AZT was approved right as act
UP was starting to take shape. From the beginning, members
of the organization were clear that, no matter how promising
the drug looked, they did not believe it would be enough.
Sarah Schulman again.
Speaker 3 (11:14):
The general tenor was that AZT was not the solution.
I think people thought that in certain quantities in combination
with other treatments, it could be beneficial for a certain
period of time, but AZT alone and especially at these
high doses, was not going to do what it claim
(11:37):
to do.
Speaker 1 (11:39):
At actup's first ever public protest, the group gathered on
Wall Street, where they condemned the exorbitant cost of AZT
and accused its manufacture of profiteering. Direct actions like the
Wall Street protest were at the core of actup's methodology.
They were usually staged with a kind of theatre flourish,
(12:01):
and they were almost always tied to a set of
specific demands. Mark Harrington saw a flyer for ACKed UP
about a year after that first protest. It was nineteen
eighty eight and Harrington was working part time at a
film archive in Chelsea.
Speaker 14 (12:20):
I was young and curious and fascinated and worried and
terrified and wanted to learn everything I could, And so
one Monday night I went to the act UP meeting
in the West Village, which was held every Monday at
seven o'clock, and I was just immediately overwhelmed by the beautiful,
powerful energy and solidarity and love in the room from
(12:44):
several generations of gay men, many lesbians, a lot of
straight women and very few of any straight men.
Speaker 1 (12:53):
By the time Harrington joined Act Up, the group had
already worked out a highly disciplined approach to staging protests.
One of their strategies was to get arrested in predetermined waves,
so that once the police rounded up one group of activists,
another would fill the gap, and then another one after that.
It meant the action would last longer and hopefully attract
(13:15):
more attention. In March of nineteen eighty eight, Act Up
organized an action on Wall Street to mark the group's
first anniversary. Harrington joined Wave three as a trainee.
Speaker 14 (13:34):
And we all sat down in an intersection in block
traffic for at least an hour, chanting and waving condoms
in the air.
Speaker 12 (13:42):
And I have been ignoring us all these years, and
the only way you get attention from them is to
hit them where it hurts, and in New York City,
of course, traffic hurts.
Speaker 14 (13:56):
I got arrested along with my fellow trainees, and we
were off to the races.
Speaker 5 (14:03):
As fast as they could.
Speaker 3 (14:03):
Take one group off the streets, another group sat down.
Speaker 13 (14:08):
When it was over, one hundred and five age demonstrators
took their curtain calls.
Speaker 2 (14:12):
And police buses on.
Speaker 14 (14:13):
The way to jail, and so I was instantly hooked.
Speaker 1 (14:28):
While protests like the Wall Street Action began to give
act UP a public profile, members working behind closed doors
put just as much effort into something less spectacular, educating
themselves and each other. Sarah Schulman again.
Speaker 3 (14:44):
When you would come into the meeting room, the first
thing you did was pass along the table and it
would be filled with handouts about all kinds of things,
about new medical investigations, about policies, about housing legislation, communications
from incarcerated people with AIDS, issues about mothers, I mean,
(15:07):
all kinds of information, and you would pick up every flyer.
Speaker 1 (15:11):
Act up's philosophy was that people with AIDS and their
allies needed an intimate understanding of what AIDS was, what
was being done about it, and what wasn't.
Speaker 3 (15:20):
There were regular teachings that you could attend. Whatever it
was that you wanted to find out about, you could
go to a teaching and the people who were experts
would give you information to read and they would explain
the basics.
Speaker 1 (15:35):
Mark Harrington, a self proclaimed science nerd, was drawn to
a study group organized by a subcommittee of act UP
called Treatment and Data.
Speaker 14 (15:44):
It was a small group of people that was led
by a pharmaceutical chemist named doctor iris Long, who had
somewhat randomly come across an act UP meeting and became
inspired by the issue and apply to her pharmaceutical knowledge
to helping us understand pharmacology and drug trials.
Speaker 1 (16:01):
With guidance from iris Long, members of Treatment and Data
started learning about the drug development process and formulating new
questions about which drugs were being tested and how they were,
essentially becoming amateur scientists.
Speaker 11 (16:16):
More than eighty AIDS treatments are being tested in about
one hundred and fifty studies in the US, according to
the FDA, and did several of these drugs that AIDS
activists want Immediate access to.
Speaker 1 (16:27):
The process for testing and approving potential new therapies for
AIDS ran through two parts of the federal bureaucracy. The
drug approval process was handled by the Food and Drug Administration,
where they reviewed drugs after they had gone through test
tube and animal studies. If the FDA gave the green light,
a drug could move into clinical trials in humans.
Speaker 11 (16:48):
After minimal study animal studies. The normal FDA approval process
has three phases. Phase three averages four years. The whole
process can take from two to ten years, more than eight.
Speaker 1 (17:00):
So that was the FDA. The other major component of
the drug development bureaucracy was the National Institutes of Health
the NIH, a sprawling agency made up of more than
two dozen federally funded research hubs. The part of NIH
responsible for developing new AIDS treatments was the National Institute
for Allergy and Infectious Disease.
Speaker 4 (17:22):
We turned now to the man who oversees all AIDS
treatment research for the federal government.
Speaker 1 (17:27):
The government official running this institute during the late nineteen
eighties was the same one who runs it today.
Speaker 4 (17:33):
He is doctor Anthony Fauci, director of the National Institute
of Allergy and Infectious Disease, a.
Speaker 1 (17:40):
Division of the National Mark Harrington, through his work with
act UP, would come to know Fauci personally.
Speaker 14 (17:46):
Tony took the HELM as the AIDS crisis was deepening,
and right as Congress began turning on the spigots of
money for AIDS research at the NIH.
Speaker 1 (17:56):
It was under pressure from Fauci that the White House
agreed in nineteen eighty six to give the NAH around
three hundred million dollars in AIDS funding. With that money,
Fauci was able to initiate research on several new drugs,
including AZT.
Speaker 5 (18:11):
At that point, I set up drug discovery units. I
began to build the clinical trial network.
Speaker 1 (18:20):
This is Fauci in an interview we did with him
this winter.
Speaker 5 (18:24):
Subsequent to that first initial infusion of money that we got.
The big challenge was going from a disease in which
you had no treatments at all except treating oppotunistic infections
and tumb is to being able to directly treat the virus.
Speaker 1 (18:43):
It's important to remember that at this time there was
no such thing as an emergency use authorization for a
drug the way there is now. So for a desperate population,
early clinical trials like the ones Fauci was overseeing were
the only way to get act to AIDS drugs, even
if they weren't yet proven to work. Many felt that
(19:05):
taking them was still better than doing nothing. But as
Mark Harrington and his peers saw firsthand, getting into the
trials was complicated, and some people were shut out of
them entirely.
Speaker 14 (19:18):
We would sometimes go to a hospital where a doctor
was running a clinical trial and demand to speak to
him and try to find out why nobody was enrolling
in his clinical trial because nobody knew about it and
its INTR criteria excluded people with a lot of AIDS
defining conditions.
Speaker 1 (19:36):
To understand why certain people were excluded from drug trials,
it helps to remember that AIDS is an umbrella term
for a variety of conditions that stem from the immune
system being destroyed by HIV. Different people experience different AIDS
defining conditions. Some of them you've heard about, like CAPESI sarcoma,
(19:56):
and numicistas pneumonia, but there are dozens of others, and
as Sarah Schulman told me, some AIDS defining conditions that
occurred primarily in women weren't included for years in the
CDC's official definition of the disease.
Speaker 3 (20:11):
The government had an official definition of AIDS that listed
what symptoms you had to have in order to get
an aid's diagnosis, and women were getting symptoms that were
not on the list, so that women were getting AIDS
and dying and never qualifying for benefits and not getting
(20:32):
access to experimental treatments. If women couldn't get into the trials,
the medication could ever be tested on them.
Speaker 1 (20:40):
In practice, drug trials were mostly populated by white men
and few, if any women or people of color. On
top of that, participating in a clinical trial often required
patients to give up the medications they were already using
to treat their symptoms.
Speaker 3 (20:56):
In some trials, people were asked to give up a
medication that kept them from going so that they could
get a medication that would keep them from getting demented.
Like human beings, should not be put in a position
to have to make decisions like that so that science
can have clean data.
Speaker 1 (21:12):
In a vacuum. It makes sense to want to test
a drug under conditions that allow you to isolate its effect.
Any extra variable or interference from other treatments can make
it harder to achieve that ideal.
Speaker 5 (21:25):
Generally, the strict protocols that had been serving the biomedical
and clinical research community well for decades of having highly
controlled clinical trials, which now retrospectively, we see that it
was not ideally suited to the very special circumstances of HIV.
Speaker 1 (21:51):
Fauci, who was never press shy, became the face of
the federal government's efforts on AIDS. This meant answering charges
that he and agency we're moving too slowly. Here's Fauci
being interviewed on PBS in nineteen eighty six.
Speaker 4 (22:06):
Do you ever have any feelings of remorse of regret
that the system works the way it does.
Speaker 9 (22:13):
It certainly is very difficult to see so many young
men suffer and die when we don't have a treatment.
That is the most powerful impetus for us. As contradictory
as it made sound to do the study in as
scientifically a sound way as possible, so.
Speaker 1 (22:28):
That Fauci tried to explain that there were good reasons
the system was set up the way. It was really
concerned that if scientists started cutting corners and rushing drugs
to market that hadn't been rigorously tested, it would only
make things worse.
Speaker 9 (22:41):
Because trying at this point to say, well, we're really
concerned about the patients who have the disease, now which
we are in fact quite concerned, let's modify the scientific
integrity of the study. The real shame and tragedy will
be five years down the pike if because of that compromwise,
we still don't have an agent that's safe and effectively
because we compromised our method of testing it, that would
(23:03):
be the real tragedy.
Speaker 1 (23:05):
Robert Vasquez Pacheco saw a different tragedy. To him, it
appeared the system just wasn't set up to deal with
a new disease that gave most people just eighteen months
to live.
Speaker 6 (23:17):
The reality was that the drug approval process could take
upwards of fifteen years, and so we said, you guys
have to change that process.
Speaker 2 (23:29):
People need medication.
Speaker 6 (23:32):
Now now, not ten years from now.
Speaker 2 (23:37):
They'll be dead.
Speaker 1 (23:46):
Members of act UP had come to believe there were
fundamental problems with the drug development process. In the fall
of nineteen eighty eight, they channeled their outrage into their
biggest public action yet, and.
Speaker 14 (23:58):
So ACTUP was trying to figure out what kind of
national action we wanted to do to kind of heighten
our message in whether it should be like, say, at
the White House or at the mall or somewhere else.
Speaker 11 (24:09):
Now.
Speaker 3 (24:09):
Historically, progressive movements had always chosen symbolic objects like the
White House or the Capitol, but in this case, one
of actup's leaders realized that we should be picking actual obstacles,
not symbolic ones, and propose that the action be in Rockville, Maryland,
at the FDA.
Speaker 1 (24:31):
On October eleventh, nineteen eighty eight, more than a thousand
act UP members arrived at the FDA's campus in Rockville, Maryland.
Many carried signs in the shape of tombstones decorated with
phrases like azy T Isn't enough and killed by the FDA.
Speaker 15 (24:48):
Thank you all for coming.
Speaker 12 (24:49):
You are witnessing the largest demonstration ever in front of
the Food and Drug Administration.
Speaker 1 (24:55):
Some protesters came wearing white lab coats and gloves covered
in red paint to symbolize that the FDA had blood
on its hands. The national media sent reporters to Rockville
to witness act up in action.
Speaker 8 (25:12):
Ronald Reagan was hoisted in effigy this morning as hundreds
of AIDS activists descended on the Food and Drug Administration,
determined to shut it down the charge that while people
are dying, FDA delays the demand that the FDA speed
up approval of drugs that show any promise against AIDS.
Speaker 1 (25:31):
Robert Vasquez Pacheco was at the protest serving as a marshal,
a peacekeeper essentially.
Speaker 6 (25:37):
So marshals were the ones who were in charge of
sort of crowd safety. You would be patrolling the lines
to make sure that people were keeping calm, or like
please do not go up into the cops face, you know,
and scream at him.
Speaker 1 (25:50):
There were about three hundred and fifty police officers on
the scene. Basquez Pacheco was wary.
Speaker 2 (25:56):
Well.
Speaker 6 (25:56):
I had told people I do not get arrested at demonstrations.
I said, I am a Puerto Rican. We disappear into
the prison system, you know, so I am not going
to get arrested. Someone got a little carried away with
themselves and broke a door, a glass door, trying to
(26:18):
get in, and immediately the cops descended on it. Of course,
myself and some marshalls showed up, you know as well
to like, okay, pull people back, you know, keep people safe,
pull people back, and the cops, you know, just started
arresting people. And I remember what cop just looked at
looked at me, said take that one because I had
a walkie talkie.
Speaker 1 (26:38):
Vazquez Pacheco and all the others who were arrested in
Rockville were taken by bus to the Montgomery County Police Academy,
where the police had set up their gym as a
temporary detention center. Eventually they let everyone go. The protest
(26:59):
at the FDA was a success. Act Up had gathered
AIDS activists from around the country in a common cause,
and they had made their demands literally front page news.
Speaker 7 (27:10):
Angry demonstrators managed to close down the Food and Drug
Administration Today, they accused the agency under President Reagan of
wasting time in the war against ADS.
Speaker 6 (27:19):
That sort of changed everything when they said, oh, wait
a minute, you know, these fagots are pissed off and
they're not playing around.
Speaker 1 (27:28):
In June of nineteen eighty nine, about nine months after
the protest in Rockville, the FDA approved two drugs to
treat people with AIDS, one for numisistus pneumonia and one
for cytomegalovirus retinitis, a condition that left many AIDS patients blind.
Both were drugs developed for other purposes that act UP
(27:48):
had been demanding access to. According to Mark Harrington, the
fact that they were finally approved was a sign that
the government was starting to listen.
Speaker 14 (27:57):
The FDA began to think about how to do things
differently because they realized that the traditional way of doing
studies was too slow for a pandemic, and the traditional
way of doing very restrictive enrollment criteria was not only
too restrictive for a pandemic like AIDS, but was actually
too restrictive period.
Speaker 1 (28:16):
It was around this time that AIDS activists began to
rally around a new slogan, Drugs into Bodies. It reflected
a mix of hope and desperation, suggesting that if only
scientists could try enough different drugs, one of them would
surely turn out to work. In the meantime, anything was
(28:37):
better than nothing.
Speaker 10 (28:38):
At the time, roughly fifty percent of gay men in
New York City were infected with HIV.
Speaker 1 (28:46):
This is Garan's Frankie Ruda, who joined Act Up in
nineteen eighty eight at the age of seventeen.
Speaker 10 (28:53):
I mean, just imagine if half the people you went
to high school with were suddenly told that they were
probably gonna die in the next three to seven years.
Drugs and the bodies was a chance at living. It
was pretty simple.
Speaker 1 (29:08):
Nobody an act Up seemed to pay much attention to
Frankie Ruda's age. She was outspoken and enthusiastic, and the
fact that she was a teenager probably just made her
a better activist.
Speaker 10 (29:20):
I had two years of high school and a GD
like you know, but I was I had very high
reading skills and apparently an unbounded sense of confidence, so
or at least determination. You know, I wasn't doing anything
in a calculated way. Nobody was doing anything in a
particularly calculated way. It was just this urgent, urgent, urgent need.
(29:45):
And the only question ask of anybody is not like
who are you or how educated you are, or like
do you have money or do you have the right
to do this? The only question act up asked of
anybody is can you help? And if you could help,
then people were really happy to work with you on anything.
Speaker 1 (30:05):
Like Mark Harrington, Frankie Ruda was drawn to the Treatment
and Data Subcommittee. There, she learned about drugs that seemed
like they might be worth testing on AIDS patients, including
some that were approved in other countries but weren't available
in the United States. At one point, Frankie Ruda started
working with a group that was importing such drugs and
setting up underground trials in New York.
Speaker 10 (30:26):
I was part of the team that decided which medications
we would import in this kind of legal gray area.
So the idea there was that, you know, we would
do sort of citizen science research, read the medical literature,
talk to doctors, talk to manufacturers, find out everything that
was known about how a medication and a pathogen might
(30:47):
respond to each other. There was a category we called
what the hell drugs, where we knew that they were
extremely safe, we had no idea if they really worked,
and we were like, well, can hurt might help? What
the hell you know?
Speaker 1 (31:03):
But identifying potential drugs was only part of the equation.
Making them accessible to people who couldn't wait around for
them to be approved was just as important, and during
the summer of nineteen eighty nine, act up rallied around
an idea known as parallel track drug trials. The pitch
was that scientists should conduct their clinical trials as rigorously
(31:24):
as they wanted, but also simultaneously, they should make experimental
drugs more widely available to people who had the disease.
To Harrington and his colleagues, parallel track seemed like a
no brainer.
Speaker 14 (31:37):
Even just from the nine months that it was from
the Sea's control of the FDA. Our understanding and knowledge
about science had grown exponentially in that period of time,
and our demands were much more precise and much more doable.
Speaker 1 (31:51):
To get parallel track in front of the scientific community,
Harrington and the others from act up crashed a medical
conference in Montreal presented their proposal to a group of
scientists that included Anthony Fauci. In addition to parallel track,
act UP sketched out an entire research agenda for which
drugs to test and in what order.
Speaker 14 (32:12):
We rolled out the same demands with each one of
them that we want this parallel track research into the
operat news take infections and cancers, research to allow people
of color, women, drug users, and children into AID clinical trials,
and we want it now.
Speaker 1 (32:27):
Fauci at least was impressed.
Speaker 5 (32:29):
They trained themselves literally to become scientists without I mean,
they were lawyers, they were stockbrokers, they were theatrical people,
and yet they studied the situation and came up with
a research genda that was really very very well founded,
(32:50):
an extraordinary and I read it and it was like, wow,
we got some really serious partners here.
Speaker 1 (33:00):
A few weeks later, Fauci was in San Francisco where
he met an aid's patient who pressed him further on
the need for parallel track.
Speaker 5 (33:07):
It was articulated to me by a person who was
lying in bed, who was on AST, whose virus was controlled,
but it was still very sick.
Speaker 1 (33:17):
The patient had a condition that was making him go blind.
A drug called gencyclovir could prevent him from losing his sight,
but he wasn't allowed to take it at the same
time as AZT if he wanted to stay in the trial.
Speaker 5 (33:31):
And I remember when I went to the person's room
down in the Castro in San Francisco, and I sat
down by his bedside with his partner, and he looked
at me and he said, doctor Fauci, do you see
what the government is doing. You're giving me a choice.
I could either take AZT and not gan cyclovir and
go blind, or I can take gan cyclovir and maintain
(33:53):
my vision and die. What kind of choice is that?
And it became eminently clear to me that we just
were not getting it.
Speaker 1 (34:03):
The next day, Fauci publicly endorsed Parallel Track during a
town hall meeting.
Speaker 5 (34:08):
That's when I decided that I would try and with them,
help to change the system. It wasn't easy for me, because,
on the one hand, there were still those among the
activists who still didn't think we were doing things well
(34:29):
enough and quickly enough. And there were many among the
scientific community who thought I was caving in to the activists.
But I knew deep down that I was doing the
right thing.
Speaker 1 (34:51):
Even as Fauci grew more sympathetic to Actup's demands, many
activists continued to regard him with suspicion.
Speaker 13 (34:58):
We're with treatment in data, with many, and we're going
to facilitate this meeting as soon as doctor and m Fauci.
Speaker 1 (35:05):
In the fall of nineteen eighty nine, Fauci arranged to
attend an act UP meeting in New York to be.
Speaker 13 (35:11):
Respectful of people who were talking, that they're not be
cheering or hissing or booing. That we really tried to
use this meeting as let's call it a working confrontation.
Speaker 5 (35:23):
I went down to the Gay and Lesbian Community Center
down in Greenwich Village literally by myself, I think I
had one of my staff was with me, and got
in the room where there were about one hundred act
UP people who were bristling within many respects, anger and
being upset with how the government was acting.
Speaker 14 (35:44):
Tony came up to a meeting of Treatment and Data
and submitted to basically three hours of tough questions from us,
including accusations of genocide.
Speaker 13 (35:54):
Hey, doctor Fauci, I don't question you about where your
moral commitment did I'm talking about the practicality of how
we get things done.
Speaker 6 (36:04):
You are in a spot which people say, what the
hell is he doing?
Speaker 5 (36:08):
And I said, okay, I'm here, I'm with you, I'm
sitting down among you. I don't have any body sticking
up for me or protecting me. Let's hear what you
have to say.
Speaker 10 (36:19):
What what we're.
Speaker 15 (36:20):
Saying is that people, including yourself, in some levels, must
have one their conscience. These deaths why there is a
more aggressive movement to make sure that the next opportunistic
infections aren't dealt with more effectively and aggressive mood.
Speaker 1 (36:36):
The meeting was quite heavy on the science. Much of
the discussion revolved around which drugs should be tested first
and how Fauci could more effectively use his political muscle.
Fauci agreed with some of the criticism and conceded that
the medical establishment could do better.
Speaker 16 (36:52):
To you, I agree with you completely.
Speaker 5 (36:54):
I told you then, I'll tell you now. Things off better.
Speaker 16 (36:56):
We could send you a list if you don't already
have it, of all of the activities.
Speaker 5 (37:01):
That are going on, but it isn't enough. We obviously still.
Speaker 10 (37:04):
Need to do more.
Speaker 1 (37:05):
At other points, Fauci aggressively corrected what act UP members
were saying to him.
Speaker 5 (37:10):
Now, that's wrong, but you keep saying I'm wrong.
Speaker 7 (37:15):
You see, this is.
Speaker 2 (37:16):
What I mean.
Speaker 5 (37:16):
You make a presumption on them.
Speaker 16 (37:18):
Tell you why you're absolutely wrong.
Speaker 1 (37:19):
You see, in those moments, Fauci could come off as
kind of patronizing.
Speaker 16 (37:24):
I think that you may be naive and understanding how
you can get things done.
Speaker 6 (37:28):
In Washington.
Speaker 16 (37:30):
You don't get many shots of going out like the
lone range, and you get one shot at get something done.
Speaker 14 (37:37):
If you do that, that's the name of the game.
Speaker 1 (37:42):
Despite the tensions that flared up at that first meeting
in New York, over the coming months, Fauci and some
of his colleagues started hosting members of the Treatment and
Data Group in Washington. Both sides remember the experience as
something of a culture clash.
Speaker 5 (37:57):
We learned a lot from them, and they learned a
lot from us. But it wasn't always a very smooth road.
Speaker 10 (38:05):
I remember going to meetings in Washington, DC and like
just getting up to the microphone and asking questions, you know,
wearing my like five dollars miniskirt that I got at
a street fair in some parking lot in Manhattan, you know,
and like they just looked at us, like, who are
you people? It felt like we were from a totally
different world.
Speaker 1 (38:25):
In many ways, they were. For years now, the activists
have been operating in the epicenter of the epidemic. Fauci
and his colleagues, on the other hand, worked in bucolic
suburban communities, far away from the mass death that surrounded
act UP members in New York. By confronting the scientists directly,
act UP was forcing them to perceive the crisis more
(38:48):
clearly and vividly.
Speaker 14 (38:51):
Once the researchers began to know living people with AIDS,
it changed people like Tony Fauci when they began to
meet with us not just as patients but as activists
and antagonists and people who wanted to get them to
do the right thing. And then they would lie awake
at night and toss and turn and think about it
(39:11):
and realize that in some cases we were right. And
meanwhile we would be tossing and turning back in New
York after meeting with them, and we would sometimes learn
things from them that we hadn't thought of before, And
we began going from having an argument to having a conversation,
and from having a conversation to having a partnership.
Speaker 1 (39:41):
The new found alliance between Fauci and the Treatment and
Data Group did not mean that act UP was done
protesting him. There was one issue in particular that the
activists were focused on.
Speaker 14 (39:52):
We started telling Tony that we wanted him to get
us invited to the meeting of the NIH funded clinical
trials network, which was called the AIDS Clinical Trial Group.
Speaker 1 (40:02):
The AIDS Clinical Trial Group at NIH determined which treatments
would be studied, and when activists insisted that their new
partnership with Fauci was little more than lip service until
people with AIDS were part of the group and included
in making those decisions.
Speaker 14 (40:18):
And then he said, yeah, you can come, but the
researchers really don't want you to come, so maybe you
should wait until the next meeting. And we were like, well, no,
that's what you told us about the last meeting. You
told us to hold on.
Speaker 1 (40:30):
And so act UP started organizing another direct action. This
one would be called storm the NIH. The plan was
for hundreds of protesters to flood Fauci's home turf and
demand more say in how the federal government set its
research priorities. The group wanted to give Fauci a chance
to respond to their demands before the protest actually happened,
(40:53):
so Mark Harrington arranged for a meeting along with another
act UP member, Peter Staley.
Speaker 14 (40:58):
Peter had the bright idea of asking Fauci for a dinner.
Speaker 1 (41:06):
Fauci invited the activists to the home of his deputy director,
doctor Jim Hill.
Speaker 14 (41:11):
Doctor Jim Hill was a good host and cooked a
good chicken and port a nice glass of wine. And
at that time I was a chain smoker and he
allowed in chain smoking. It was crazy. We're in doctor
Hill's living room and Tony's like, so, why are you
guys here? What brings you down?
Speaker 5 (41:29):
Mark Carrington and Peter Staley said, you know, we still
need more. We want more of the clinical trials, we
want more representation. You're doing great, we love you, but
we still are going to storm the NIH And I said,
oh my goodness, you know, be careful. That might put
us back a bit.
Speaker 14 (41:48):
Tony's like, well, why we're talking. We've been talking for
months and Peter's like, yeah, but you haven't given in
to any of our demands since Parallel Track. You're not
letting people with AIDS and their allies to go to
those meetings.
Speaker 5 (42:01):
He says, no, it's nothing personal against you, but we've
got to storm the NIH. We've got more that we've
got to do.
Speaker 14 (42:08):
We were like, we'll call off the demo if you'd
given to all our demands, but for now, we're just
going to go forward.
Speaker 1 (42:14):
Fauci did not give in to their demands. As much
as his relationship with the activists had deepened, they were
still on opposite sides of a line.
Speaker 5 (42:23):
Even though we became colleagues and in some respects friends,
They would not let that relationship deter them from pushing
even more for what they felt they needed.
Speaker 1 (42:48):
On the morning of May twenty first, nineteen ninety, activists
assembled at a metro station near the NIH. Then they
marched to campus, a quiet, leafy collection of brick buildings
and concrete office blocks.
Speaker 2 (43:01):
People a night won't.
Speaker 9 (43:02):
Be quiet, Oh my drugs treatment.
Speaker 2 (43:05):
Or riot people.
Speaker 1 (43:06):
At one point, an air horn started blasting every twelve
minutes as a memorial to all the people dying of
AIDS on a daily basis.
Speaker 10 (43:23):
This isn't a syche of your molecule.
Speaker 17 (43:24):
It's representing that there's treatments out there that the NIH
isn't testing. They're not testing.
Speaker 1 (43:28):
This is Garan's Frankie Ruda in footage from the protest,
and there's a lot.
Speaker 17 (43:32):
Of different treatments that they're not studying, and they're not
studying them in all populations when they are studying them.
Speaker 1 (43:37):
Frankie Ruda did not hesitate to call Fauci out by name.
Speaker 10 (43:41):
And that building down that way.
Speaker 17 (43:42):
Dr Anthony Fauci and a lot of other hot shot
scientists are having conference deciding the research priorities for the
National Institutes of Valerine and Infectice Diseases. We're down here
because we think we should be deciding the research priorities
for the National Institute of Allergy and in Texted Diseases,
because these are the people who are literally the disease.
These are the people who know what's going on because
they're dealing with it every day. Those people don't they're
(44:02):
fascinated by this little buyers and they don't give a
fuck about the people who are living.
Speaker 10 (44:06):
With thee.
Speaker 17 (44:08):
For dying for right.
Speaker 1 (44:12):
Frankie Ruda was not the only one at the protest
who took direct aim at Fauci. One guy carried a
sign that said doctor Fauci you are killing us. Another
said Anthony Fauci, I piss on you.
Speaker 5 (44:24):
They had my head on a spike. It was it
was really very you know, in some respects poignant and moving,
in some respects almost entertaining.
Speaker 1 (44:36):
Stormed the NIH encapsulated the inside outside strategy that act
up had now perfected. While some members worked on Fauci
and his colleagues from close range, others ratcheted up the
pressure publicly. In some cases it was the same activists
who were doing both.
Speaker 5 (44:55):
Pete promised me Peter Staley that he was going to
be so outland thish he was going to get arrested.
And when when they finally did storm the NIH, he
climbed up on the overhanging panopy of my building and
I saw that the police was starting to get a
(45:16):
little rough, so they grabbed Peter. And I saw that,
and I was afraid they were going to hurt him,
so I ran down. I was looking at it out
my window, and I ran down to the ground floor,
and just as I got to the ground floor, Peter
was in handcuffs being led away by the police. And
Peter looked up and said, with a big smile in
(45:36):
his face, he said, see Tony, I told you I
was going to get arrested, and the police looked at
us like, of both of these guys crazy.
Speaker 2 (45:45):
Here they are.
Speaker 5 (45:45):
Storming the building and they look like they're good friends.
Speaker 1 (45:57):
One month after storm the nih In Gue of nineteen ninety,
Anthony Fauci gave a speech at the sixth International AIDS
Conference in San Francisco.
Speaker 10 (46:06):
It is a.
Speaker 16 (46:07):
Distinct honor and a pleasure to participate in the closing
ceremonies of the sixth International Congress on AIDS and to
share with you my perspective on AIDS research.
Speaker 1 (46:16):
Fauci spent much of his allotted time giving his perspective
on what the new decade would mean for the AIDS
epidemic projection. Then he turned his attention to the relationship
between scientists and activists. Activists bring a very special insight
into the way that we design our scientific approaches. Together,
we are a formidable force with a common goal. Fauci
(46:39):
wanted the activists and attendance to come away with a
clear message.
Speaker 5 (46:43):
I don't agree with everything you're doing, but you need
to understand that we are all together in this. The
scientific community is not your enemy. The scientific community cares
about you. The scientific community has devoted everything that they
do to try and protect you and get your lives
back to some form of normality with the proper drugs.
(47:06):
And it was a real coming together of a realization
that we were all in this together.
Speaker 16 (47:12):
This is the way we serve, but we must never
lose sight of the fact that the people whom we
serve are the HIV infected people throughout the world.
Speaker 1 (47:21):
Thank you.
Speaker 14 (47:27):
Basically, Fauci came up to us and he told us
that he was giving in to all of our demands,
and he was telling the researchers that they had to
do what we asked, and he followed up on that.
Speaker 1 (47:38):
In the months after the conference, it was announced that
people with AIDS would finally be included in the clinical
trials group, positioning them to exert real influence on its
research agenda. Fauci had made good on his word.
Speaker 14 (47:52):
So we got to see him at the height of
his defensiveness and we got to see him change and
that was a wonderful thing. And ever since then, people
with AIDS and their allies and advocates have been part
of the AIDS research clinical trials system and not just
beating up on the outside, but actually helping to shape
(48:13):
it from the inside.
Speaker 1 (48:17):
Harrington's happiness wasn't shared by every member of act UP.
Sarah Schulman, for example, was unimpressed by how slowly Fauci
had come around and what it had taken to change
his mind.
Speaker 3 (48:29):
He was brought around by a combination of pressure that
made him uncomfortable from people he did not understand, like
poor people or women, and a kind of collegiality from
a certain kind of man that he eventually was able
to identify with.
Speaker 1 (48:48):
As Garantz Frankie Ruda told me, many people outside of
Treatment and Data were starting to get antsy about how
close some of their fellow activists were getting to the
people in power.
Speaker 10 (48:58):
People started having arguments about whether or not to continue
meeting with scientists. There was a proposal for a moratorium
on meetings for six months, and I remember very vividly
being at the general meeting where that was discussed, where
someone got up and said, it's only for six months,
it's not like it's the rest of your life, and
someone else said, it might actually be the rest of
my life.
Speaker 1 (49:18):
Meanwhile, some members of act UP had started conceiving of
the organization as being about more than just AIDS activism.
They wanted it to be a vehicle for upending the
entire American healthcare system and tackling what they considered to
be the broader systemic issues, of which AIDS was just
one component.
Speaker 10 (49:36):
The question arose whether or not act UP was a
more general left wing group or whether it was specifically
an HIV organization. And that's I think where things started
to get tense.
Speaker 1 (49:49):
Increasingly, treatment and data members felt like they were operating
independently of their colleagues.
Speaker 14 (49:55):
Instead of, you know, going to demos, we were now
going to scientific meetings and helping to design produc calls,
and so the old famous inside outside strategy where you
negotiate but you also demonstrate. The balance became more going
to science meetings and less to demonstrations, and in retrospect,
dot created tension.
Speaker 1 (50:18):
In the years since its founding, act UP had managed
to get a staggering number of their demands met. They
had won changes to the drug testing and approval process.
They had secured a seat at the table for people
with AIDS when it came to decision making around research funding.
They had secured compassionate use approval for drugs to treat
AIDS related blindness and numicistis pneumonia. Here again is Robert
(50:43):
Vasquez Pacheco.
Speaker 6 (50:44):
We changed the ways research was done in the United
States and brought an element of compassion. I mean that
the process became humanized. We got drugs into bodies.
Speaker 1 (50:59):
But despite their victories, everyone we talked to for this
episode was quick to temper their excitement about what act
UP had achieved. By the end of the nineteen eighties,
for all their efforts, there was still no drug that
could save people from dying of AIDS.
Speaker 14 (51:15):
We began to realize that this thing of hoping for
like a magic bullet, that you know, we would all
be activists for two or three years, and then the
cure would come, the vaccine would come, and we would
all go back to our lives wasn't going to.
Speaker 10 (51:27):
Happenzt forestalled things for a while for some who took
it and were able to take it and tolerate it.
Some people were able to get access to drugs that
prevented opportunistic infections, or they were just were lucky enough
to have immune systems that declined more slowly. But a
lot of people didn't, and just the pace of the
dying picked up.
Speaker 6 (51:45):
This was an epidemic that kept growing, so it wasn't
as if it reached a plateau. We kept seeing more
and more people getting sick.
Speaker 3 (51:53):
It was very hard to be so young and watch
your friends suffer and die on our regular basis aids
is a terrible death. And to watch people in their
twenties and thirties become demented and blind and covered in
skin cancer, I mean, it was horrible.
Speaker 1 (52:15):
The group never completely folded, but around nineteen ninety one
a fallo period started, during which dozens, if not hundreds,
of act UP members burned out and quit. Robert Basquez
Pacheco moved to Philadelphia and tried to focus on his
own life. He still had faith that something eventually would work,
(52:35):
but he also thought about all the people, like his
boyfriend Jeff, who would already be gone when that day arrived.
Speaker 6 (52:41):
And of course what struck me was, oh, God, you
know they're going to find something, and it's going to
be too late for so many people, for so many people.
Speaker 10 (53:23):
Takes a few months.
Speaker 2 (53:25):
But on Bones here for Strong, we tell all.
Speaker 14 (53:31):
Our school friends a sign all the cast in the playground.
Speaker 1 (53:39):
On the next episode of Fiasco, the Tide begins to
turn as a new class of drugs shows promise against HIV.
Speaker 6 (53:47):
The fact that it happened in one patient it tells
us for the first time that it's actually possible.
Speaker 1 (53:53):
Fiasco is presented by Audible Originals and Prologue Projects. The
show is produced by Andrew Parsons, Sam Graham Felson, Madeline Kaplan,
Ulla Kulpa, and me Leon Nafock. Our researcher is Francis Carr.
Editorial support from Jessica Miller and Norah Waswaz, Archival research
by Michelle Sullivan. This season's score is composed by Edith Mudge.
(54:17):
Additional music by Nick Sylvester of God Mode, Joel Saint,
Julian and Dan English, Noah Hackt, and Joe Valley. Our
theme song is by Spatial Relations. Our credit song this
week is the Place Where He Inserted the Blade by
Black Country New Road Music licensing courtesy of Anthony Roman.
Audio mixed by Erica Wong with additional support from Selina Urabe.
(54:41):
Our artwork is designed by Teddy Blanks at Chips and Y.
David Blum is the editor in chief of Audible Originals.
Mike Charzik is the vice president of Audible Studios. Zach
Ross is head of acquisition and development for Audible. Thanks
to Chris Roby, Susie Lichtenberg, and the team at Radio
Lab and Peter Yassi. Special thanks to David France, Bill
(55:03):
Balman and Thomas Knauglis for sharing with us the audio
of Fauci's meeting with act UP. Thank you for listening,
and see you back here next week for Episode seven.
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