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