December 18, 2024 • 36 mins
In the 80s and 90s, Derek Hodel was the executive director of the New York Buyer's Club — also known as the People with AIDS Health Group. When life saving AIDS drugs in America were too expensive or not approved yet, Derek bypassed the American healthcare system and brought them in from abroad. He reflects on his work and its impact, nearly 40 years later.
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Speaker 1 (00:00):
But We Loved is a production of iHeart Podcasts and
the Outspoken podcast Network. Hey it's Jordan. A tiny note.
Will be going on a two week break for the holidays,
but we'll be back on January eighth. I want to
thank you all for all of the amazing support this year,
and I can't wait to share more episodes. Here's today's show.
Speaker 2 (00:22):
We had so many clients who would drag themselves into
the office who were obviously unwell. We had a lot
of people's relatives, like people's mother would come and try
and get drugs for their son. We had people's lovers,
we had famous people, but the story was all the same.
We were their only avenue in a system that had
(00:44):
no better response for people who spent their whole life
in a system that said no, like no, you can't
have that, No we can't do it, No, it's not
going to work. The big thing that we did is
that we created a place that said yeah us.
Speaker 1 (01:06):
As a gay kid, growing up religious and in the South,
I thought being gay was the worst thing I could
ever be. Now as a journalist, I'm trying to unlearn
that by seeking out our history, and what I've found
are people and stories full of courage, perseverance, and love.
In this episode, we'll meet Derek Hodele, who was the
(01:27):
executive director of the New York Buyers Club in the
eighties and nineties, the group that smuggled drugs into America
to save the lives of people dying from AIDS. Will
learn how his operation worked and what he ultimately learned
about America's healthcare system and about himself. From my Heart podcast,
I'm Jordan and Solve This and This is What We Loved. I,
(02:15):
like many people my age, first heard about Buyer's Clubs
when I watched Dallas Buyer's Club. It was a movie
starring Matthew McConaughey that came out in twenty thirteen, and
it's based on a true story about a cowboy diagnosed
with AIDS in the eighties. He travels to Mexico, where
he finds drugs that drastically improve his health, but those
(02:39):
drugs were not yet approved in the United States, so
to make a living, he smuggles them into the country
and directly sells them to desperate AIDS patients for a profit,
and he calls this operation the Dallas Buyer's Club. In
the movie, the system he's working against is the American government,
(03:00):
the Food and Drug Administration or the FDA. And I
remember when I watched it. I was closeted and nineteen,
fresh off my Texas public school education, and I was
shocked that the government could stand in the way of
saving lives. But the idea of skirting the law to
(03:22):
get life saving drugs into the bodies of people who
needed them felt heroic to me. My next guest, Derek Hodle,
was the executive director of the New York Buyers Club
formerly known as the People with Aids Health Group. To
be clear, it was much more official than the Dallas
Buyers Club and actually was led and operated by queer people.
(03:45):
By the time Derek was twenty eight in the late eighties,
he had become one of the nation's foremost experts on AIDS,
drugs and the barriers to getting them to patients. His
two biggest enemies were the FDA and their long approval
process and Big Pharma and their pricing of drugs. He
bulldozed them constantly, smuggling in those drugs from other countries
(04:08):
where they were already approved and or at cheaper prices,
all in an effort to save lives. Derek could have
never known that this would be his life for most
of his twenties, but growing up in Colorado, he did
know exactly who he was from an early age. So, Derek,
(04:34):
why don't we start off by you telling us a
little bit about who you were growing up as a kid.
Speaker 2 (04:41):
I grew up in Boulder, Colorado, which was a kind
of hippie, dippy town in the West in the seventies,
and I was a total nerd. I was really into theater,
and by the age of fifteen, I was out. I
was gay.
Speaker 1 (05:00):
Did you have any role models in real life that
you could point to? I just am pretty astounded at
the fact that you had the confidence to be out
at fifteen, because fifteen is I feel like for the
nineteen seventies. That's that's pretty It was really early.
Speaker 2 (05:17):
Yeah, I did have role models. Eventually, there were teachers
at my school who were gay, and I remember one.
It was very nice. He and I became friends in
a way that I came to learn that he had
a partner and they lived together, and I went to
dinner there, and you know, and so I saw this
(05:39):
sort of wow reality of two men living together, having
a normal house and a fulfilling and happy life. I
also had another teacher who was also very friendly to
me and spent a lot of time with me, and
we did He and I did talk about sort of gayness,
(05:59):
and I remember like spending a lot of time in
his car driving around after school. Eventually he hit.
Speaker 1 (06:06):
On me, are you implying that you guys hooked up?
Speaker 2 (06:11):
Yeah, I mean we you know, we had sort of
one sided sex. I was probably sixteen. I just sort
of laid there, m like, I didn't have sex back.
You know, I knew he could be arrested, but you know,
he was really helpful. He listened to me for a
long time for months and months and months, and ultimately
(06:34):
helped me to feel more normal.
Speaker 1 (06:37):
So it sounds like, you know, even though it was
not necessarily the most celebrated time to be gay in America,
you found some people in your life that were kind
of guiding you in some ways and giving you space
to listen and even giving you images of love.
Speaker 2 (07:02):
Yeah. I had a few people who helped me understand
that it wasn't just completely tragic. It was still it
was a pretty negative time to be gay, at least
in Colorado. It felt pretty negative.
Speaker 1 (07:17):
Well, Derek, I know that you ended up living in
New York. When did you decide to leave Boulder and why?
Speaker 2 (07:25):
I went to New York City for the first time
when I was sixteen years old. I drove across the
country with a friend from the restaurant I worked with,
who was like a really openly gay guy, really openly gay,
And I spent two weeks in New York and I
just like, I just had a blast. He took me
(07:47):
to all these gay places. He also took me to,
you know, the theater and windows on the world. But
I just I knew the first day that I wanted
to be in New York. I loved the energy, the smell,
the speed, the intensity of it. It was just unlike
anything I'd ever seen.
Speaker 1 (08:08):
And did you end up going to school there?
Speaker 2 (08:10):
I decided by the time I was sixteen that I
wanted to go to New York. I applied to a
bunch of theater schools. I auditioned at NYU and got in.
I went there in I think seventy eight. I lived
in a dormitory on Washington Square.
Speaker 1 (08:24):
What was New York City like in those years?
Speaker 2 (08:28):
Crime was really really high and the city was bankrupt
and it had a terrible reputation, but it was a
really lively time for the arts and for gay people
and for nightlife. In probably nineteen seventy eight or seventy nine,
I went to the Christopher Street Pride Parade, which was
(08:51):
enormous and very exciting. I was wearing really, really really
tight jeans and you had to like lay down to
get them on. I had long hair, you know, I
had long, kind of Jesus hair. And it was the
first time I experienced walking down the street as a
(09:12):
gay person and having people cheering like it was just
it was incredibly empowering and exciting for me and for everybody.
I had never seen anything like that.
Speaker 1 (09:23):
Yeah, that's amazing. I want to fast forward a little
bit to nineteen eighty one, when this really famous article
in the New York Times comes out about forty one
homosexuals having a rare cancer. Was that the first time
that you actually heard about AIDS?
Speaker 2 (09:46):
So, to be clear, I didn't read the New York
Times when I was twenty one, and so I never
saw the actual article. I mean, I've seen it a
million times since then, but I never saw the actual article.
I read the New York Native, which was a broadsheet
newspaper that was mostly about nightlife at the time.
Speaker 1 (10:08):
That's like a that was a gay newspaper, in gay newspaper.
Speaker 2 (10:12):
Yeah, the Native started running stories about AIDS, and pretty
soon there was a story that were like a thousand
dead and counting, you know, which was a front page,
you know, huge headline story and you didn't hear it
on TV.
Speaker 1 (10:30):
How did it feel for you to read something like that.
Speaker 2 (10:35):
I didn't understand it. It didn't feel personal. It felt
like a tragedy, and it felt scary at some level,
but it didn't feel personally scary to me. You know,
everybody in the in the newspaper was in their thirties
and I was twenty. I didn't know people with AIDS.
I didn't understand I was personally vulnerable until probably a
(10:58):
couple years later. You know. There were a couple things
that really turned my head. They were all in the
eighty four eighty five time. At some point, friends of
mine and I went to the circus at Madison Square Garden.
Speaker 1 (11:16):
On Saturday, April thirtieth, nineteen eighty three. The Gay Men's
Health Crisis or GMHC, one of the very first AIDS
organizations in the world held a Ringling Brothers in Barnum
and Bailey's circus to raise money and awareness for AIDS.
It was held at Madison Square Garden in New York
and all seventeen thousand, six hundred seats were sold out.
(11:40):
It raised three hundred thousand dollars. That's almost a million
adjusted for inflation today. But even though the event was
a huge success, it was never covered by the New
York Times or any mainstream news outlet.
Speaker 2 (11:56):
The ring master did this like ladies and gentlemen, children
of all ages. If you can imagine how different the
audience response to us circus is when everyone's gay. When
you know, they like they clapped at the headdresses and
the things that people were wearing, the trapeze artists and
(12:19):
their tights and their butts, and you know, like it
was a lot of fun, but you know, it was
a fundraiser, and so there were down moments where people
talked about AIDS. And that's one of the times I
really remember thinking like, this is a real thing, and
it's big, and it's growing and it's scary. The other
(12:41):
thing that really really affected me I went to the
march on Washington the Gay March in the early eighties.
It was a beautiful, beautiful day on the Mall in Washington.
It was sunny and glory, and the Name's Project Quilt
(13:04):
was on the mall and it had at the time
a couple thousand panels that had been handmade by people
who survived, commemorating people who had died.
Speaker 1 (13:17):
The AIDS quilt was conceived by gay activist Cleave Jones.
Many of his friends were dying because of AIDS or
were already dead. He was frustrated with the government's indifference
and wanted to create a visible symbol of all the
lives already lost. He called on people across the nation
to send in a quilt for the loved ones they
(13:40):
lost to AIDS. Each quilt or panel would be a
memorial to that person, decorated with patches and colors and
messages that were meaningful to them. Each panel had to
be three by six feet, the approximate size of a coffin,
and on October eleventh, nineteen eighty seven, the quilt was
(14:01):
displayed for the very first time on the National Mall
in DC. By this point, AIDES had already killed almost
twenty five thousand Americans, nearly two thousand sent in panels
and altogether laid out The AIDS quilt, essentially a patchwork
of coffins, was bigger than a football field.
Speaker 2 (14:22):
Here was this quilt that you could walk across and
look at panels that had been handmade by people who
survived commemorating people who had died, and they were intensely
personal memorials, really, and people who were walking across that
(14:42):
quilt were just uniformly weeping. It was the most emotional
experience I had ever had before, and it really connected
with me that this is about death. These are all
dead people, and they're all third or forty, and the
(15:04):
tragedy just overwhelmed me.
Speaker 1 (15:07):
So you have this really emotional experience, what does that
move you to do? At that point?
Speaker 2 (15:15):
So I just knew AIDS was a defining event of
my life and that I could no longer pursue the theater,
which is sort of the thing that I wanted to do,
and I wanted to do work with HIV, and I
just decided that that's what I was going to do.
Speaker 1 (15:43):
Derek had been changed by witnessing the gravity of AIDS.
First by the circus fundraiser in New York and then
the AIDS Quilt in DC. He decided it was time
to get involved, so he began volunteering with GMHC in
their Crisis Intervention Worker or CIW program. Ciw's helped people
(16:03):
with AIDS with any administrative affairs they might have, helping
them find a dentist, getting enrolled in therapy, and planning
for the end of their life. This threw Derek into
the front lines of the epidemic. He saw all the
frustrating elements of the American healthcare system that were failing
his clients and his community. One of those was the
(16:27):
drug approval process for the FDA. At that point, it
could take up to nine years for experimental drugs to
get into the bodies of people that needed them, but
AIDS patients didn't have that kind of time. They were
dying and dying fast.
Speaker 2 (16:45):
I found a place to volunteer. I volunteered at gay
Mens Health Crisis starting in eighty six. I mean, truthfully,
I didn't last very long as a CIW because it
was really intense, but I kept doing it. And client
I had was Michael Hirsch, who was the founder of
the People with AIDS Coalition. One of the founders, like
one of the you know, big guys with HIV, and
(17:08):
you know, he was a huge diva and he was
very high maintenance. But he was well enough that we
went out for coffee and we went out to the movies,
and I came over to his house and he complained,
but he also, you know, he was very sick. I
realized I actually wanted to work in HIV. There was
(17:30):
this group called the People with Aids Health Group. This
was a spin off from the People with Aids Coalition,
and they were looking for an executive director, and so,
you know, I had a lot of hubris at the
time I applied. I think I was probably the only
candidate they interviewed. They didn't really know what they were doing.
They hired me. I was their first employee, and suddenly
(17:52):
I was working for what was then called a buyer's club.
The People with Aids Health Group was this spin off
that was intended to help people with AIDS get drugs
that they couldn't get otherwise at a time when there
were no there were just no anti HIV treatments, and
so people were dying from all kinds of horrible things.
Speaker 1 (18:16):
Because when you die from AIDS. You're not really dying
from AIDS. You're dying from some sort of opportunistic infection.
Speaker 2 (18:25):
Yeah. Yeah, So you die of the capital C sarcoma,
or the toxoplasmosis or the cryptococcal meningitis or you know,
there was a long list of things that would kill you,
like and they were awful, ugly, horrible ways to die.
And so many people with HIV at that time started
(18:48):
sort of trying to educate themselves about the science, about research,
to learn about drugs, and in the course of that
they learned about things that were understudy and that were promising,
that showed results in the test tube that were, you know,
potentially anti HIV and some of these things you could get.
(19:09):
So the big one at the time was called ALE
seven twenty one. It was this mixture of egg lit
bids that was being studied in Israel seemed promising in
the test tube, and the health group got this idea like, shit,
it's eggs, you know, how bad can it be? Can
we try it? Like, we totally understand it doesn't it
(19:32):
hasn't been proved, But what's the difference, because we're going
to die. That was the argument that started the health group,
and the health Group helped hundreds and hundreds of people
obtain ALE seven twenty one.
Speaker 1 (19:46):
So Derek, just to recaut for a moment here, this
group was basically trying to bring in drugs from foreign
countries that would help solve some of these opportunistic infections
that were coming up. And the reason you were getting
it from foreign countries was because they weren't approved in
(20:10):
the United States yet. Is that right?
Speaker 2 (20:14):
It is right? And that's the first couple of years
of the health group. That was all it was. Once
I had started there, we became aware of, oh, there
are actually drugs that treat fungus or infections or other
problems that people with AIDS have that are that actually work.
(20:34):
And so Michael Hirsch he had some horrible fungal infection
which is like it looks like you have cottage cheese
in your mouth, like it's disgusting and awful, and he
was in terrible pain, and he overlapped with me with
the People with Aids Health Group because he needed this
(20:54):
drug really bad. So the drug was diflucan or flucnaisol,
and of course people with AIDS needed not one, they
needed like hundreds of them. It was not approved in
the US, it was approved in England, and so we
set about importing fluconasol for people, right.
Speaker 1 (21:12):
Like, if you guys could sort of have these drugs
almost put a pause on the progression of the HIV
until a cure came, or until medication came that would
officially suppress or make it undetectable. That you guys were
looking for these small little band aids in the meantime.
Speaker 2 (21:35):
Yeah, and for people who were living with that stuff,
it was huge because it helped to treat the awful
things that people experienced. And I thought at the time,
like this is a way to sort of shove it
in the face of the FDA, to say, this system
(21:58):
is insane where people who are dying of infections can't
get access to an experimental drug because it's experimental and
it might harm them. But in the meantime, we're going
to smuggle this drug in through the mail, and you know,
please do stop us if you're so inclined. And so
we set up a system where at first it's just insane,
(22:22):
but with the fluconaisol, we set up a system to
mail individual packages addressed to people in the health Group,
and so the mail man would come with hundreds of
boxes of drugs and it never got like, it never
got seized.
Speaker 1 (22:41):
Tell me what the stakes were for you to get
this operation done correctly?
Speaker 2 (22:46):
You know, the drugs cost money, like we had to
buy them sometimes at retail levels. We felt like we
had a great responsibility to the people who wanted the
drugs and who gave us their money in order to
get them for them. So I felt like the stakes
were really huge that we because we took money from
people and we couldn't lose it and we couldn't fail them.
Speaker 1 (23:07):
Was there a person that you remember meeting individually that
was impacted by this?
Speaker 2 (23:12):
We had so many clients and kind of all stripes
who had dragged themselves into the office who were obviously unwell.
We had a lot of people's relatives, like people's mother
would come and try and get drugs for their son.
We had people's lovers, we had famous people, but the
story was all the same. We were their only avenue
(23:34):
in a system that had no better response. And so
I guess for me, the health group was about creating
a place where the answer was yes, we can do that,
or we'll do our best for people who spent their
whole life in a system that said no, like no,
you can't have that, No we can't do it, No
(23:55):
it's not going to work. The big thing that we
did is that we created a place that said yeah, yes.
Speaker 1 (24:01):
Now, the other side of this, Derek, was that the
FDA wasn't your only enemy. There were some drugs that
you wanted that they actually did approve, but they were
way too expensive to purchase in America. So tell me
about how your other enemy was the pharmaceutical companies that
(24:21):
were pricing these drugs and profiting off of them.
Speaker 2 (24:25):
I went to the International AIDS Conference in Montreal in
nineteen ninety. Maybe one of the things I remember really
clearly is walking through this exhibit hall, which was totally
dominated by pharmaceutical companies and things like it. And if
you've ever been to a medical conference like it's, you know,
it's like a circus. They're selling drugs basically. And I
(24:48):
saw this booth for a drug called pentamidine and panamdine
was a drug that people took to prevent numerous sisters
creamy eye pneumonia, which is a terrible pneumonia that killed you.
And so they took pentamondin and I asked the guy
(25:09):
it was a British company and they said, oh, yeah,
it's like twenty dollars and I said, it's twenty dollars.
It's one hundred dollars here, Like, how could that possibly
be it's the same drug, and could we buy it
for twenty dollars? And so we figured out how to
(25:34):
buy pentamady in the UK over the counter or at
retail prices on the neighborhood of twenty dollars, and we
sold it to people for twenty dollars because here it
cost one hundred dollars and the company that made panamady
here was really mad. And so not too long after that,
(25:55):
I got a call from the Anti Aging Committee of
the Senate who was doing hearings on prescription drug pricing,
and they found us like in the newspaper, and they
wanted us to testify. And so it was an example
of like, we were never going to be able to
supply enough pontamity to meet anyone's need, but we succeeded
(26:17):
in catching the attention of the Senate. It still didn't
fix prescription drug pricing. If you live in the United States,
you know this, but it pushed the dialogue forward.
Speaker 1 (26:26):
And it seems like your work with the Health Group
was quite influential in getting some of these pharmaceutical companies
to lower their drug prices in America, as well as
pushing the FDA to change their policy. Is that true.
Speaker 2 (26:44):
I think it's true that the Health Group contributed to
the reform of the FDA drug approval process, not just
us lots of activists, but the FDA changed the way
that drugs are approved in America, and that represents a
huge change for HIV and ultimately for medicine because it
(27:05):
didn't it wasn't limited to A's and the Health Group
I think was part of that. It was one little
piece in a cascade of HIV activists. But I think
the victories were really few and far between. If you ask,
like how many people were we able to help? How
(27:25):
many lives did we save? Like those kind of numbers
are really elusive and hard to get at, and the answer, ultimately,
sadly is not enough. Like never were we successful in
that way.
Speaker 1 (27:39):
I wonder if there's a moment for you or story
that you have where it really epitomizes you being in
the middle of those two worlds, like, on the one hand,
you are succeeding a lot in the business that you're in,
in the cause that you're in, and on the other hand,
you're aware that you're still sort of fighting a losing war.
(28:03):
You know.
Speaker 2 (28:04):
I was reminded, I guess, so many times by how
we were losing, by the funerals and how many funerals
there were for people who died, even some of the
people that we helped, like Michael Hurst, you know, like
(28:24):
it was a it was kind of a victory of
sorts because we succeeded in getting this drug for him
and his doctor. His doctor really wanted him to have it.
The drug that he was taking beforehand was this stuff
called amphoterras in which people called amphoterable because you would
infuse the drug and it would and it would cause
(28:46):
you to shake. They called it shake and bake like
it would give you intense fevers and chills. So it
was this It was a big victory in that way.
He was more comfortable, but it wasn't too much longer
before he died. Mychael Hirsch, you know, died with his
fluconaisole in his hand. It didn't save his life. I
remember going to so many funerals where the fact that
(29:08):
we were able to help with you know, drug X,
just didn't matter because ultimately they succumbed to something like
it was just a tragedy. And there were so many
like there was just the number of those examples is
so overwhelming that it puts the health Group's work in
(29:34):
kind of a bleak perspective.
Speaker 1 (29:46):
Fifteen years after the first major AIDS cases and nearly
three hundred and fifty thousand deaths later, a breakthrough happened.
Scientists in the mid nineties found that if you took
more ultiple medications, including a new class of drugs called
protease inhibitors, the HIV would stop replicating and render the
(30:08):
virus undetectable. This was massive news. People were going to live,
people were going to come back from their deathbeds. But
every second up until that point, Derek felt like he
was throwing buckets of water on a forest fire that
seemed to be getting bigger and bigger.
Speaker 2 (30:28):
I think a lot of what kept me going was rage.
I was so angry and I'm still angry by how
the world and the government and people handled HIV and
how it handles gay people it was a scandal. Then
it's still a scandal. But I was so angry at
(30:50):
the system and probably naive as a young man and
thinking that you know, that the system would to take
care of me. And I come from a fairly privileged background,
and so I hadn't been taught as a young person
that knows you know, in fact, the system is not
(31:11):
going to take care of you. And so a lot
of what kept me going through through HIV and you know,
and well passed the health group it's time because I
kept doing other kinds of work for many, many years,
was just rage against the system.
Speaker 1 (31:29):
I can still hear the energy and passion and even
anger in your voice as you talk about some of
these stories. Is it still there for you?
Speaker 2 (31:41):
Oh yeah, yeah, it's you know, it's rage and it's
it's rage and it's grief both and they're all tangled up,
but I I I can't pull them apart. And it's
forty years later and I still have both, Like I'm
(32:09):
just I'm overcome with rage and grief.
Speaker 1 (32:15):
Fast forwarding Derek to the mid to late nineties, when
these life saving drugs begin to come out. What was
going through your mind and your heart? As you begin
to see these drugs literally bring people sometimes back to
(32:39):
life from their deathbed after you've been on the front
lines of trying to put out fire after fire after fire.
Speaker 2 (32:48):
I mean, it was kind of miraculous, the Lazaruth stories
that emerged at that time. And I have to say,
you know, the first news of the Party's inhibitors got
at the Vancouver AIDS conference, and there was a lot
of disbelief, and certainly I was very skeptical, and so
(33:11):
it took a while before we realized, like, oh my god,
people actually are coming back from the dead. And you know,
there's any number of people who nearly died in the
mid nineties who are not only came back from the dead,
but are still alive in twenty twenty four. Like it's crazy,
(33:33):
how amazing that is. And there's a lot of those people,
there's not everybody. And the protease inhibitors, which were really
the first effective drugs, like every other drugs, there are
all kinds of access problems and some people got them
before others, and poor communities got them much less than
(33:54):
other people. And we're not even talking about the international situation,
so there is still just all this inequality everywhere that
that it's the colors the story. But it's fair to
say it was a miracle.
Speaker 1 (34:10):
If you were to sort of take out some of
the scientific element of this and you were left with
community and and all the people in the relationships that
you made along the way, what was your lesson from that?
Speaker 2 (34:26):
In spite of everything, we can take care of each other.
That's true looking from a lot of different perspectives, but
certainly as gay people, we can do a lot for
each other and have done, and we'll need to continue to.
You know, HIV changed everything for gay people, and in
(34:49):
spite of the awfulness of it, it changed a lot
of things for the better. So it's just all kind
of a lesson that we can, you know, we can
take care of each other, and when you're afraid that
the system's not going to take care of you, that's
a good thing to know that.
Speaker 1 (35:08):
You can always turn within. Yeah, What We Loved is
hosted by me Jordan Gonsolvis. New episodes drop every Wednesday.
A Tiny Note will be going on a two week
break for the holidays, but we'll be back on January eighth.
(35:30):
If you want to write in to tell your story,
email us at but We Looved at gmail dot com,
or you can send me a message on Instagram or
TikTok at your underscore Goainsolves. We are a production of
The Outspoken Podcast Network and iHeart Podcasts. But We Loved
was originally developed with Pushkin Industries. Our producers are Joey
(35:52):
pat Emily Meronoff, and Christina Loranger. Our executive producers are
me Maya Howard and Katrina Norville. Original music by Steve
Bone special thanks to Jay Bronson and Roquel Willis. If
you loved this episode, leave us a rating and follow
us on Apple Podcasts and Spotify, and thank you for listening.
(36:13):
I'll see you next week.
But We Loved is a production of iHeart Podcasts and
the Outspoken podcast Network. Hey it's Jordan. A tiny note.
Will be going on a two week break for the holidays,
but we'll be back on January eighth. I want to
thank you all for all of the amazing support this year,
and I can't wait to share more episodes. Here's today's show.
Speaker 2 (00:22):
We had so many clients who would drag themselves into
the office who were obviously unwell. We had a lot
of people's relatives, like people's mother would come and try
and get drugs for their son. We had people's lovers,
we had famous people, but the story was all the same.
We were their only avenue in a system that had
(00:44):
no better response for people who spent their whole life
in a system that said no, like no, you can't
have that, No we can't do it, No, it's not
going to work. The big thing that we did is
that we created a place that said yeah us.
Speaker 1 (01:06):
As a gay kid, growing up religious and in the South,
I thought being gay was the worst thing I could
ever be. Now as a journalist, I'm trying to unlearn
that by seeking out our history, and what I've found
are people and stories full of courage, perseverance, and love.
In this episode, we'll meet Derek Hodele, who was the
(01:27):
executive director of the New York Buyers Club in the
eighties and nineties, the group that smuggled drugs into America
to save the lives of people dying from AIDS. Will
learn how his operation worked and what he ultimately learned
about America's healthcare system and about himself. From my Heart podcast,
I'm Jordan and Solve This and This is What We Loved. I,
(02:15):
like many people my age, first heard about Buyer's Clubs
when I watched Dallas Buyer's Club. It was a movie
starring Matthew McConaughey that came out in twenty thirteen, and
it's based on a true story about a cowboy diagnosed
with AIDS in the eighties. He travels to Mexico, where
he finds drugs that drastically improve his health, but those
(02:39):
drugs were not yet approved in the United States, so
to make a living, he smuggles them into the country
and directly sells them to desperate AIDS patients for a profit,
and he calls this operation the Dallas Buyer's Club. In
the movie, the system he's working against is the American government,
(03:00):
the Food and Drug Administration or the FDA. And I
remember when I watched it. I was closeted and nineteen,
fresh off my Texas public school education, and I was
shocked that the government could stand in the way of
saving lives. But the idea of skirting the law to
(03:22):
get life saving drugs into the bodies of people who
needed them felt heroic to me. My next guest, Derek Hodle,
was the executive director of the New York Buyers Club
formerly known as the People with Aids Health Group. To
be clear, it was much more official than the Dallas
Buyers Club and actually was led and operated by queer people.
(03:45):
By the time Derek was twenty eight in the late eighties,
he had become one of the nation's foremost experts on AIDS,
drugs and the barriers to getting them to patients. His
two biggest enemies were the FDA and their long approval
process and Big Pharma and their pricing of drugs. He
bulldozed them constantly, smuggling in those drugs from other countries
(04:08):
where they were already approved and or at cheaper prices,
all in an effort to save lives. Derek could have
never known that this would be his life for most
of his twenties, but growing up in Colorado, he did
know exactly who he was from an early age. So, Derek,
(04:34):
why don't we start off by you telling us a
little bit about who you were growing up as a kid.
Speaker 2 (04:41):
I grew up in Boulder, Colorado, which was a kind
of hippie, dippy town in the West in the seventies,
and I was a total nerd. I was really into theater,
and by the age of fifteen, I was out. I
was gay.
Speaker 1 (05:00):
Did you have any role models in real life that
you could point to? I just am pretty astounded at
the fact that you had the confidence to be out
at fifteen, because fifteen is I feel like for the
nineteen seventies. That's that's pretty It was really early.
Speaker 2 (05:17):
Yeah, I did have role models. Eventually, there were teachers
at my school who were gay, and I remember one.
It was very nice. He and I became friends in
a way that I came to learn that he had
a partner and they lived together, and I went to
dinner there, and you know, and so I saw this
(05:39):
sort of wow reality of two men living together, having
a normal house and a fulfilling and happy life. I
also had another teacher who was also very friendly to
me and spent a lot of time with me, and
we did He and I did talk about sort of gayness,
(05:59):
and I remember like spending a lot of time in
his car driving around after school. Eventually he hit.
Speaker 1 (06:06):
On me, are you implying that you guys hooked up?
Speaker 2 (06:11):
Yeah, I mean we you know, we had sort of
one sided sex. I was probably sixteen. I just sort
of laid there, m like, I didn't have sex back.
You know, I knew he could be arrested, but you know,
he was really helpful. He listened to me for a
long time for months and months and months, and ultimately
(06:34):
helped me to feel more normal.
Speaker 1 (06:37):
So it sounds like, you know, even though it was
not necessarily the most celebrated time to be gay in America,
you found some people in your life that were kind
of guiding you in some ways and giving you space
to listen and even giving you images of love.
Speaker 2 (07:02):
Yeah. I had a few people who helped me understand
that it wasn't just completely tragic. It was still it
was a pretty negative time to be gay, at least
in Colorado. It felt pretty negative.
Speaker 1 (07:17):
Well, Derek, I know that you ended up living in
New York. When did you decide to leave Boulder and why?
Speaker 2 (07:25):
I went to New York City for the first time
when I was sixteen years old. I drove across the
country with a friend from the restaurant I worked with,
who was like a really openly gay guy, really openly gay,
And I spent two weeks in New York and I
just like, I just had a blast. He took me
(07:47):
to all these gay places. He also took me to,
you know, the theater and windows on the world. But
I just I knew the first day that I wanted
to be in New York. I loved the energy, the smell,
the speed, the intensity of it. It was just unlike
anything I'd ever seen.
Speaker 1 (08:08):
And did you end up going to school there?
Speaker 2 (08:10):
I decided by the time I was sixteen that I
wanted to go to New York. I applied to a
bunch of theater schools. I auditioned at NYU and got in.
I went there in I think seventy eight. I lived
in a dormitory on Washington Square.
Speaker 1 (08:24):
What was New York City like in those years?
Speaker 2 (08:28):
Crime was really really high and the city was bankrupt
and it had a terrible reputation, but it was a
really lively time for the arts and for gay people
and for nightlife. In probably nineteen seventy eight or seventy nine,
I went to the Christopher Street Pride Parade, which was
(08:51):
enormous and very exciting. I was wearing really, really really
tight jeans and you had to like lay down to
get them on. I had long hair, you know, I
had long, kind of Jesus hair. And it was the
first time I experienced walking down the street as a
(09:12):
gay person and having people cheering like it was just
it was incredibly empowering and exciting for me and for everybody.
I had never seen anything like that.
Speaker 1 (09:23):
Yeah, that's amazing. I want to fast forward a little
bit to nineteen eighty one, when this really famous article
in the New York Times comes out about forty one
homosexuals having a rare cancer. Was that the first time
that you actually heard about AIDS?
Speaker 2 (09:46):
So, to be clear, I didn't read the New York
Times when I was twenty one, and so I never
saw the actual article. I mean, I've seen it a
million times since then, but I never saw the actual article.
I read the New York Native, which was a broadsheet
newspaper that was mostly about nightlife at the time.
Speaker 1 (10:08):
That's like a that was a gay newspaper, in gay newspaper.
Speaker 2 (10:12):
Yeah, the Native started running stories about AIDS, and pretty
soon there was a story that were like a thousand
dead and counting, you know, which was a front page,
you know, huge headline story and you didn't hear it
on TV.
Speaker 1 (10:30):
How did it feel for you to read something like that.
Speaker 2 (10:35):
I didn't understand it. It didn't feel personal. It felt
like a tragedy, and it felt scary at some level,
but it didn't feel personally scary to me. You know,
everybody in the in the newspaper was in their thirties
and I was twenty. I didn't know people with AIDS.
I didn't understand I was personally vulnerable until probably a
(10:58):
couple years later. You know. There were a couple things
that really turned my head. They were all in the
eighty four eighty five time. At some point, friends of
mine and I went to the circus at Madison Square Garden.
Speaker 1 (11:16):
On Saturday, April thirtieth, nineteen eighty three. The Gay Men's
Health Crisis or GMHC, one of the very first AIDS
organizations in the world held a Ringling Brothers in Barnum
and Bailey's circus to raise money and awareness for AIDS.
It was held at Madison Square Garden in New York
and all seventeen thousand, six hundred seats were sold out.
(11:40):
It raised three hundred thousand dollars. That's almost a million
adjusted for inflation today. But even though the event was
a huge success, it was never covered by the New
York Times or any mainstream news outlet.
Speaker 2 (11:56):
The ring master did this like ladies and gentlemen, children
of all ages. If you can imagine how different the
audience response to us circus is when everyone's gay. When
you know, they like they clapped at the headdresses and
the things that people were wearing, the trapeze artists and
(12:19):
their tights and their butts, and you know, like it
was a lot of fun, but you know, it was
a fundraiser, and so there were down moments where people
talked about AIDS. And that's one of the times I
really remember thinking like, this is a real thing, and
it's big, and it's growing and it's scary. The other
(12:41):
thing that really really affected me I went to the
march on Washington the Gay March in the early eighties.
It was a beautiful, beautiful day on the Mall in Washington.
It was sunny and glory, and the Name's Project Quilt
(13:04):
was on the mall and it had at the time
a couple thousand panels that had been handmade by people
who survived, commemorating people who had died.
Speaker 1 (13:17):
The AIDS quilt was conceived by gay activist Cleave Jones.
Many of his friends were dying because of AIDS or
were already dead. He was frustrated with the government's indifference
and wanted to create a visible symbol of all the
lives already lost. He called on people across the nation
to send in a quilt for the loved ones they
(13:40):
lost to AIDS. Each quilt or panel would be a
memorial to that person, decorated with patches and colors and
messages that were meaningful to them. Each panel had to
be three by six feet, the approximate size of a coffin,
and on October eleventh, nineteen eighty seven, the quilt was
(14:01):
displayed for the very first time on the National Mall
in DC. By this point, AIDES had already killed almost
twenty five thousand Americans, nearly two thousand sent in panels
and altogether laid out The AIDS quilt, essentially a patchwork
of coffins, was bigger than a football field.
Speaker 2 (14:22):
Here was this quilt that you could walk across and
look at panels that had been handmade by people who
survived commemorating people who had died, and they were intensely
personal memorials, really, and people who were walking across that
(14:42):
quilt were just uniformly weeping. It was the most emotional
experience I had ever had before, and it really connected
with me that this is about death. These are all
dead people, and they're all third or forty, and the
(15:04):
tragedy just overwhelmed me.
Speaker 1 (15:07):
So you have this really emotional experience, what does that
move you to do? At that point?
Speaker 2 (15:15):
So I just knew AIDS was a defining event of
my life and that I could no longer pursue the theater,
which is sort of the thing that I wanted to do,
and I wanted to do work with HIV, and I
just decided that that's what I was going to do.
Speaker 1 (15:43):
Derek had been changed by witnessing the gravity of AIDS.
First by the circus fundraiser in New York and then
the AIDS Quilt in DC. He decided it was time
to get involved, so he began volunteering with GMHC in
their Crisis Intervention Worker or CIW program. Ciw's helped people
(16:03):
with AIDS with any administrative affairs they might have, helping
them find a dentist, getting enrolled in therapy, and planning
for the end of their life. This threw Derek into
the front lines of the epidemic. He saw all the
frustrating elements of the American healthcare system that were failing
his clients and his community. One of those was the
(16:27):
drug approval process for the FDA. At that point, it
could take up to nine years for experimental drugs to
get into the bodies of people that needed them, but
AIDS patients didn't have that kind of time. They were
dying and dying fast.
Speaker 2 (16:45):
I found a place to volunteer. I volunteered at gay
Mens Health Crisis starting in eighty six. I mean, truthfully,
I didn't last very long as a CIW because it
was really intense, but I kept doing it. And client
I had was Michael Hirsch, who was the founder of
the People with AIDS Coalition. One of the founders, like
one of the you know, big guys with HIV, and
(17:08):
you know, he was a huge diva and he was
very high maintenance. But he was well enough that we
went out for coffee and we went out to the movies,
and I came over to his house and he complained,
but he also, you know, he was very sick. I
realized I actually wanted to work in HIV. There was
(17:30):
this group called the People with Aids Health Group. This
was a spin off from the People with Aids Coalition,
and they were looking for an executive director, and so,
you know, I had a lot of hubris at the
time I applied. I think I was probably the only
candidate they interviewed. They didn't really know what they were doing.
They hired me. I was their first employee, and suddenly
(17:52):
I was working for what was then called a buyer's club.
The People with Aids Health Group was this spin off
that was intended to help people with AIDS get drugs
that they couldn't get otherwise at a time when there
were no there were just no anti HIV treatments, and
so people were dying from all kinds of horrible things.
Speaker 1 (18:16):
Because when you die from AIDS. You're not really dying
from AIDS. You're dying from some sort of opportunistic infection.
Speaker 2 (18:25):
Yeah. Yeah, So you die of the capital C sarcoma,
or the toxoplasmosis or the cryptococcal meningitis or you know,
there was a long list of things that would kill you,
like and they were awful, ugly, horrible ways to die.
And so many people with HIV at that time started
(18:48):
sort of trying to educate themselves about the science, about research,
to learn about drugs, and in the course of that
they learned about things that were understudy and that were promising,
that showed results in the test tube that were, you know,
potentially anti HIV and some of these things you could get.
(19:09):
So the big one at the time was called ALE
seven twenty one. It was this mixture of egg lit
bids that was being studied in Israel seemed promising in
the test tube, and the health group got this idea like, shit,
it's eggs, you know, how bad can it be? Can
we try it? Like, we totally understand it doesn't it
(19:32):
hasn't been proved, But what's the difference, because we're going
to die. That was the argument that started the health group,
and the health Group helped hundreds and hundreds of people
obtain ALE seven twenty one.
Speaker 1 (19:46):
So Derek, just to recaut for a moment here, this
group was basically trying to bring in drugs from foreign
countries that would help solve some of these opportunistic infections
that were coming up. And the reason you were getting
it from foreign countries was because they weren't approved in
(20:10):
the United States yet. Is that right?
Speaker 2 (20:14):
It is right? And that's the first couple of years
of the health group. That was all it was. Once
I had started there, we became aware of, oh, there
are actually drugs that treat fungus or infections or other
problems that people with AIDS have that are that actually work.
(20:34):
And so Michael Hirsch he had some horrible fungal infection
which is like it looks like you have cottage cheese
in your mouth, like it's disgusting and awful, and he
was in terrible pain, and he overlapped with me with
the People with Aids Health Group because he needed this
(20:54):
drug really bad. So the drug was diflucan or flucnaisol,
and of course people with AIDS needed not one, they
needed like hundreds of them. It was not approved in
the US, it was approved in England, and so we
set about importing fluconasol for people, right.
Speaker 1 (21:12):
Like, if you guys could sort of have these drugs
almost put a pause on the progression of the HIV
until a cure came, or until medication came that would
officially suppress or make it undetectable. That you guys were
looking for these small little band aids in the meantime.
Speaker 2 (21:35):
Yeah, and for people who were living with that stuff,
it was huge because it helped to treat the awful
things that people experienced. And I thought at the time,
like this is a way to sort of shove it
in the face of the FDA, to say, this system
(21:58):
is insane where people who are dying of infections can't
get access to an experimental drug because it's experimental and
it might harm them. But in the meantime, we're going
to smuggle this drug in through the mail, and you know,
please do stop us if you're so inclined. And so
we set up a system where at first it's just insane,
(22:22):
but with the fluconaisol, we set up a system to
mail individual packages addressed to people in the health Group,
and so the mail man would come with hundreds of
boxes of drugs and it never got like, it never
got seized.
Speaker 1 (22:41):
Tell me what the stakes were for you to get
this operation done correctly?
Speaker 2 (22:46):
You know, the drugs cost money, like we had to
buy them sometimes at retail levels. We felt like we
had a great responsibility to the people who wanted the
drugs and who gave us their money in order to
get them for them. So I felt like the stakes
were really huge that we because we took money from
people and we couldn't lose it and we couldn't fail them.
Speaker 1 (23:07):
Was there a person that you remember meeting individually that
was impacted by this?
Speaker 2 (23:12):
We had so many clients and kind of all stripes
who had dragged themselves into the office who were obviously unwell.
We had a lot of people's relatives, like people's mother
would come and try and get drugs for their son.
We had people's lovers, we had famous people, but the
story was all the same. We were their only avenue
(23:34):
in a system that had no better response. And so
I guess for me, the health group was about creating
a place where the answer was yes, we can do that,
or we'll do our best for people who spent their
whole life in a system that said no, like no,
you can't have that, No we can't do it, No
(23:55):
it's not going to work. The big thing that we
did is that we created a place that said yeah, yes.
Speaker 1 (24:01):
Now, the other side of this, Derek, was that the
FDA wasn't your only enemy. There were some drugs that
you wanted that they actually did approve, but they were
way too expensive to purchase in America. So tell me
about how your other enemy was the pharmaceutical companies that
(24:21):
were pricing these drugs and profiting off of them.
Speaker 2 (24:25):
I went to the International AIDS Conference in Montreal in
nineteen ninety. Maybe one of the things I remember really
clearly is walking through this exhibit hall, which was totally
dominated by pharmaceutical companies and things like it. And if
you've ever been to a medical conference like it's, you know,
it's like a circus. They're selling drugs basically. And I
(24:48):
saw this booth for a drug called pentamidine and panamdine
was a drug that people took to prevent numerous sisters
creamy eye pneumonia, which is a terrible pneumonia that killed you.
And so they took pentamondin and I asked the guy
(25:09):
it was a British company and they said, oh, yeah,
it's like twenty dollars and I said, it's twenty dollars.
It's one hundred dollars here, Like, how could that possibly
be it's the same drug, and could we buy it
for twenty dollars? And so we figured out how to
(25:34):
buy pentamady in the UK over the counter or at
retail prices on the neighborhood of twenty dollars, and we
sold it to people for twenty dollars because here it
cost one hundred dollars and the company that made panamady
here was really mad. And so not too long after that,
(25:55):
I got a call from the Anti Aging Committee of
the Senate who was doing hearings on prescription drug pricing,
and they found us like in the newspaper, and they
wanted us to testify. And so it was an example
of like, we were never going to be able to
supply enough pontamity to meet anyone's need, but we succeeded
(26:17):
in catching the attention of the Senate. It still didn't
fix prescription drug pricing. If you live in the United States,
you know this, but it pushed the dialogue forward.
Speaker 1 (26:26):
And it seems like your work with the Health Group
was quite influential in getting some of these pharmaceutical companies
to lower their drug prices in America, as well as
pushing the FDA to change their policy. Is that true.
Speaker 2 (26:44):
I think it's true that the Health Group contributed to
the reform of the FDA drug approval process, not just
us lots of activists, but the FDA changed the way
that drugs are approved in America, and that represents a
huge change for HIV and ultimately for medicine because it
(27:05):
didn't it wasn't limited to A's and the Health Group
I think was part of that. It was one little
piece in a cascade of HIV activists. But I think
the victories were really few and far between. If you ask,
like how many people were we able to help? How
(27:25):
many lives did we save? Like those kind of numbers
are really elusive and hard to get at, and the answer, ultimately,
sadly is not enough. Like never were we successful in
that way.
Speaker 1 (27:39):
I wonder if there's a moment for you or story
that you have where it really epitomizes you being in
the middle of those two worlds, like, on the one hand,
you are succeeding a lot in the business that you're in,
in the cause that you're in, and on the other hand,
you're aware that you're still sort of fighting a losing war.
(28:03):
You know.
Speaker 2 (28:04):
I was reminded, I guess, so many times by how
we were losing, by the funerals and how many funerals
there were for people who died, even some of the
people that we helped, like Michael Hurst, you know, like
(28:24):
it was a it was kind of a victory of
sorts because we succeeded in getting this drug for him
and his doctor. His doctor really wanted him to have it.
The drug that he was taking beforehand was this stuff
called amphoterras in which people called amphoterable because you would
infuse the drug and it would and it would cause
(28:46):
you to shake. They called it shake and bake like
it would give you intense fevers and chills. So it
was this It was a big victory in that way.
He was more comfortable, but it wasn't too much longer
before he died. Mychael Hirsch, you know, died with his
fluconaisole in his hand. It didn't save his life. I
remember going to so many funerals where the fact that
(29:08):
we were able to help with you know, drug X,
just didn't matter because ultimately they succumbed to something like
it was just a tragedy. And there were so many
like there was just the number of those examples is
so overwhelming that it puts the health Group's work in
(29:34):
kind of a bleak perspective.
Speaker 1 (29:46):
Fifteen years after the first major AIDS cases and nearly
three hundred and fifty thousand deaths later, a breakthrough happened.
Scientists in the mid nineties found that if you took
more ultiple medications, including a new class of drugs called
protease inhibitors, the HIV would stop replicating and render the
(30:08):
virus undetectable. This was massive news. People were going to live,
people were going to come back from their deathbeds. But
every second up until that point, Derek felt like he
was throwing buckets of water on a forest fire that
seemed to be getting bigger and bigger.
Speaker 2 (30:28):
I think a lot of what kept me going was rage.
I was so angry and I'm still angry by how
the world and the government and people handled HIV and
how it handles gay people it was a scandal. Then
it's still a scandal. But I was so angry at
(30:50):
the system and probably naive as a young man and
thinking that you know, that the system would to take
care of me. And I come from a fairly privileged background,
and so I hadn't been taught as a young person
that knows you know, in fact, the system is not
(31:11):
going to take care of you. And so a lot
of what kept me going through through HIV and you know,
and well passed the health group it's time because I
kept doing other kinds of work for many, many years,
was just rage against the system.
Speaker 1 (31:29):
I can still hear the energy and passion and even
anger in your voice as you talk about some of
these stories. Is it still there for you?
Speaker 2 (31:41):
Oh yeah, yeah, it's you know, it's rage and it's
it's rage and it's grief both and they're all tangled up,
but I I I can't pull them apart. And it's
forty years later and I still have both, Like I'm
(32:09):
just I'm overcome with rage and grief.
Speaker 1 (32:15):
Fast forwarding Derek to the mid to late nineties, when
these life saving drugs begin to come out. What was
going through your mind and your heart? As you begin
to see these drugs literally bring people sometimes back to
(32:39):
life from their deathbed after you've been on the front
lines of trying to put out fire after fire after fire.
Speaker 2 (32:48):
I mean, it was kind of miraculous, the Lazaruth stories
that emerged at that time. And I have to say,
you know, the first news of the Party's inhibitors got
at the Vancouver AIDS conference, and there was a lot
of disbelief, and certainly I was very skeptical, and so
(33:11):
it took a while before we realized, like, oh my god,
people actually are coming back from the dead. And you know,
there's any number of people who nearly died in the
mid nineties who are not only came back from the dead,
but are still alive in twenty twenty four. Like it's crazy,
(33:33):
how amazing that is. And there's a lot of those people,
there's not everybody. And the protease inhibitors, which were really
the first effective drugs, like every other drugs, there are
all kinds of access problems and some people got them
before others, and poor communities got them much less than
(33:54):
other people. And we're not even talking about the international situation,
so there is still just all this inequality everywhere that
that it's the colors the story. But it's fair to
say it was a miracle.
Speaker 1 (34:10):
If you were to sort of take out some of
the scientific element of this and you were left with
community and and all the people in the relationships that
you made along the way, what was your lesson from that?
Speaker 2 (34:26):
In spite of everything, we can take care of each other.
That's true looking from a lot of different perspectives, but
certainly as gay people, we can do a lot for
each other and have done, and we'll need to continue to.
You know, HIV changed everything for gay people, and in
(34:49):
spite of the awfulness of it, it changed a lot
of things for the better. So it's just all kind
of a lesson that we can, you know, we can
take care of each other, and when you're afraid that
the system's not going to take care of you, that's
a good thing to know that.
Speaker 1 (35:08):
You can always turn within. Yeah, What We Loved is
hosted by me Jordan Gonsolvis. New episodes drop every Wednesday.
A Tiny Note will be going on a two week
break for the holidays, but we'll be back on January eighth.
(35:30):
If you want to write in to tell your story,
email us at but We Looved at gmail dot com,
or you can send me a message on Instagram or
TikTok at your underscore Goainsolves. We are a production of
The Outspoken Podcast Network and iHeart Podcasts. But We Loved
was originally developed with Pushkin Industries. Our producers are Joey
(35:52):
pat Emily Meronoff, and Christina Loranger. Our executive producers are
me Maya Howard and Katrina Norville. Original music by Steve
Bone special thanks to Jay Bronson and Roquel Willis. If
you loved this episode, leave us a rating and follow
us on Apple Podcasts and Spotify, and thank you for listening.
(36:13):
I'll see you next week.
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