An Oral History of the AIDS Crisis

But We Loved is a production of iHeart Podcasts and the Outspoken Podcast Network. Hey, this is Jordan with a quick note. After this episode, we just have three more before our season officially ends, and I have two things to ask you. First, if you haven't already, go follow me on Instagram or TikTok at JR Underscoregan Solve this. That's a JR underscore g O N s A l VS. That way we can keep in touch and you can stay with me on this journey. And two, for our

And there was one science magazine that had a cover story on everything that was known about the disease, and I snatched that up and read it on the plane about three times. And when we got to our hotel outside Disney World, I broke down and just started sobbing. And the guy I was dating was also named Peter, and he was so scared for me he didn't know what was going on or how to come for me, and I said, it's part of me. It's genetically integrated. I'm fucked.

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 recap our season's coverage of the AIDS crisis, hearing about the epidemic through the people that lived it, the people that grie through it, and the

In the south part of the park were all getting in and the hills were covered with gay people, well covered with gay people.

Now, we never saw each other before in the daytime.

Really, we're when we knew about each other, We imagined each other, we knew all that, but we never really looked at each other. And multitudes of gay people covering the hills and Bertie looked at me and said, you know what, I think, we're people.

At this point, the gay rights movement began to organize nationally for the first time ever. In the late seventies, the first ever national March for Gay rights happened in DC. The momentum was building. Young queer people from across the nation heard stories about gay life in the big cities of America New York, Chicago, San Francisco, and Atlanta. Moving there seemed like a fantasy, a life where they could finally be unashamed, now that being gay was no longer

Being gay was a party. It was a party. Our whole social life centered around the bar and the disco. My favorite group was.

Abba and With Dancing Queen Dancing Queen. When one of their songs came on, we would take a hit of poppers and just go wild on the dance floor.

It was hot and sweaty, you know, lots of guys dance with their shirts off. It was all joy and happiness, just a big party.

It might seem superficial, but partying was a big deal. Gay people could finally form community with each other without the fear of being arrested. These bonds would quite literally carry them through the AIDS crisis just a few years later. But this time of pleasure and indulgence in the seventies

It was sex without consequence.

That was how Rubinstein, the famous stylist and Studio fifty four regular, talking about sexual freedom. Before AIDS, it.

Was all about flirting. It was all about attraction. You went out to dance and you went out to get laid just because of the sexual revolution. It wasn't like you had the option to go home with all these people. You actually had the responsibility.

I'm not joking. You had the.

Responsibility to go home with as many people as you could because you were just spreading the love. Literally, the whole idea of Going to these clubs was to celebrate. It was to celebrate your liberation, was to celebrate your sexuality. Was to celebrate your desire to sort of express yourself and dance and to listen to them to music that made you really happy.

Bath Houses were grinder back then.

They were you know, it was just a sex place, right, I mean, that's what it was for.

That's Larry Colton, a man whose life was deeply impacted by the AIDS crisis in San Francisco. Here he is talking about the role of the bath houses in the seventies.

They would be given a towe when they came in. They had a locker, they would just rope put their taels on and they'd start walking around. And they had private rooms, and they had public spaces, and they had sanas, and they had steam rooms. And in San Francisco, the original bath house I first went to, which was in an alleyway, was really fancy. They had like a like a mini restaurant. They had a wall, aquarium wall, huge waterfalls. I mean, it was very fancy and people would stay

But at the peak of all this fun, a mysterious illness began affecting gay men, at first a severe flu, but then rashes and fungal infections in the mouth, painful purple lesions all over the body, and severe weight loss called wasting. Here's Geen Carlo Musto, a filmmaker who was part of the small but mighty group of lesbian activists during the AIDS crisis, describing what she saw in New.

York and in the East village where I lived at the time. You would see these guys, these walking skeletons, who had, you know, these markings that they showed ks or who just looked like they were old men, and they were these young guys.

Here's Larry again.

It unfolded first and foremost at the bars. People started losing weight. Somebody would come in with a blotch on their face or on their arm. You know that that's carposi sarcoma thrush. People would get rashes in their mouth, and you just saw people. You'd say, well, where's I remember the first one? I'm like, where's Larry? Where is he? I haven't seen it for a while. Oh he's sick. It was like out of a classic movie. Simultaneously, you're

On July third, nineteen eighty one, The New York Times ran a small article on page twenty of the paper titled rare cancer seen in forty one homosexuals. The cases were mostly in New York in San Francisco, but eight people had already died. That article created a caricature of who was being a fan gay men who had up to quote ten sexual encounters each night, up to four times a week. At one point, the disease was called GRID gay related immune deficiency. It would eventually become known

Oh god, it came crashing down. My friends started getting sick. You banded together, but now you were abandoned together. Not in celebration, you abandoned together in fear. And that changed everything.

We'll be right back in the mid eighties. Although most people in the gay community knew about AIDS by this point, it still felt far away, or at least it did for Peter Staley, who would go on to become a legendary AIDS activist.

The first kind of conversation about AIDS I remember was that summer in eighty three at a gay bar with a guy about my age and I'm twenty two, who was also pretty closeted, and he says, are you hearing about age? And I said yeah. He said kind of scary. What are you hearing? And he said, I hear it's only really happening to the older gays who have s up with like a thousand guys.

In the early days of the epidemic, there wasn't much information about the virus, and that led to a lot of conspiracy theories. Richard Burns, the current board chair of the American LGBTQ Museum, says it made everyone scared to go about life the way they once did.

I remember sitting at dinner with some friends in San Francisco, and there were all these theories about how you got AIDS because this is before the discovery of the HIV virus. Okay, like no one knew anything. And there was one theory that like, well, if you have more than a thousand sex partners, your immune system could collapse. Where that came from, or an excessive use of poppers that could cause ace. I mean no, people, you know, we all believed that I stopped using poppers.

It felt far away until suddenly it wasn't. Here's Larry again talking about going on vacation with this partner Joe.

Joe and I used to go to Mikono's. We went each year because we just loved it, and our best friends Gene and Dave would go with us. And they said, come over to our pool and we'll sit around the pool. And so we went, and Joe and David, our friend my best friend actually were and his partner of eight years. You know, it was not a new relationship, although I'd

But things really began to hit home when people partners received diagnoses. Here's Larry again.

So that night we went to bed and when I woke up the next morning, the sheets were soaked and I knew, I knew as that was it. And when that was one of the major symptoms when heard about you know, it's night sweats. And I woke up and Joe wasn't awake yet and I was lying in sweat. I'm like, oh my god, he's got AIDS.

Of course, people who were diagnosed with the virus themselves felt their own lives changed forever. Here's Olympic gold medalist Greg luganis often considered the greatest diver of all time. On the moment he was diagnosed.

I was having some problems with my ear ear infection or something, and then I went into the doctor and I said, oh, by the way, I'd like to do an HIV tests. And it was my thought that if I was HIV positive, then I would pack my bags, go back to California, lock myself in my house, and wait to die, because that's how we thought of HIV AIDS. And so when he came by and gave me the results that I was HIV positive, I mean, it was

Peter again on his diagnosis.

On November fifteenth, nineteen eighty five, I got called at my trading desk by the nurse in my doctor's office at work at work, and he's like, we need you back from more blood work. And I said what is it? And he said A low white budsuck out and I said, well, what could that be? What might that mean? He said, ah, he'll talk to you about that, and I'm up, really, you know, I'm on my trading desk. I'm pushy as all hell. I'm an aggressive bond trader, right, and I'm like, na,

To be diagnosed was terrifying. By the late eighties, tens of thousands of Americans were already dead. The CDC said, if you had AIDS, you'd likely only have five years to live. One particular moment that illustrated just how much death had occurred was in nineteen eighty seven, when the AIDS Quilt was laid out at the National Mall in Washington, d C. For the first time, people across America were asked to send in a quilt for the loved ones

Here was this quilt that you could walk across and look at panels that were intensely personal memorials. Really, and people who were walking across that 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 thirty or forty, and the tragedy just overwhelmed me.

Even though so many were dying and many were already dead. The reaction of the United States government was slow and negligent. The president at the time, Ronald Reagan, was a staunch Conservative who had been elected in a landslide largely due to evangelical Christians, and AIDS was a disease centered around drugs and gay sex. It would be several years into the crisis before the President even said the word AIDS publicly.

You also have to remember, in the minds of the government and the media, like mainstream media and in corporate America, gay people were completely disposable. And the fact that as it emerged that AIDS affected intravenious drug users and gay men. There was a perception that, like, well, maybe we're better off without those people. William Buckley in the New York Times. He was the editor of the National Review, and you know, one of the leaders of the right in America, the

You remember how you felt when you read that.

We were so enraging, you know, And the fact that the Times would publish that shows you what they thought of us.

But all of the sadness and grief was being transformed into rage. And out of that rage a group was born that would change everything. Act UP. It stood for the AIDS Coalition to Unleash Power, the premier AIDS activism organization, and on March twenty fourth, nineteen eighty seven, Act UP held its first protests on Wall Street during the morning rush hour to capture and direct the attention of Americans

I knew people were angry and I knew people were starting to feel like it wasn't enough. I went down to Wall Street. It was kind of a cold March day, and people are chanting and a leaflitting, and all of a sudden, a bunch of them got in the middle of the road, sat there with their signs and holding hands with each other and just started chanting.

The middle of Wall Street.

In the middle of Wall Street, they stopped traffic. They were protesting. They were doing a dye in. Basically, they were laying in the street, in the middle of Wall Street, and they weren't moving. The police were there, they were trying to get them out.

Of the way.

They basically were hauling them out on stretchers, and people weren't moving. Everybody was determined that they were going to get arrested. I remember this energy just made me go into a different frame of mind. So I was just dodging around them with the camera and I was shooting between the policemen's legs and what not, trying to get trying to document this because it was just so important.

At this point. The top priority for most activists was to keep people alive, since the likelihood of death was so high. People diagnosed were desperate for any experimental drugs, but there were two groups standing in the way. The first was the FDA, who's slow approval process wasted time that AIDS patients didn't have. So activists like Derek Hodle, the leader of the New York Buyers Club, took matters

This system 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, but with the fluconaisol, we set up a system to mail individual packages back through the mail,

The other enemy was the pharmaceutical companies. Activists felt that they made experimental drugs expensive and unaffordable. They could do that because in America, people dying of AIDS was a market and their desperation for life saving drugs was a demand.

They slapped this obscene price, was it. It seems low today, seems cheap, but at that time it was the highest price of any drug in history, ten thousand dollars a year. Country was shocked at the price. Even some government officials were like, this is that's shocking, and.

For contexts, this is the only viable drug right that's treating AIDS.

So in September of eighty nine, we decided to do a huge demonstration on Wall Street in front of the Stock Exchange. But I'm like, hmm, nobody's actually gotten onto the floor of the Stock Exchange. So I made that my mission impossible, and within a few weeks we figured it out how to get in, how to bypass security.

Yeah, How did you figure that out?

You know, the great thing about age activism is that it was a queer movement, queer based, and that gives you the largest by network in the world.

You mean to say, there's a gay person.

We are everywhere. Wow, we are everywhere. There are tons of us in the White House, and there are endless numbers of us on Capitol Hill, in the military, on the stock exchange. I was a bond trader, you know, we are everywhere. And there was an act up member that worked not the stock floor trading floor, but there were commodities floors next to it. He worked on one of the commodity's floors, and he was my spy. We discovered an old antique balcony and nobody was up there,

Wow.

Three days later, Wow, boom, and it never gets better than that, It never feels better than that. It were activism rarely works that fast.

Act up In other AIDS organizations were making good progress and racking up victories, but even though they were winning battles, they were still losing the war. The death toll was growing year after year. By this point, most people in the community knew someone who had died of AIDS, and for many it was their partner. Here's Chris talking about his partner Rogers difficult final days.

So Roger had been home for a few weeks from work, just bedridden, and I was taking care of him, and he was starting to would I want to say babbel kind of talking things that didn't make sense to me, or it was not part of any conversation. I could hear exactly what he was saying, but to me it didn't make sense, and I knew I think. I called the hospital and they said, just get him here to the hospital. I had to carry him. He was not even strong enough to walk. I had to carry him

And here's Danny talking about the moment he said goodbye to his partner Darryl.

And on Christmas Eve of nineteen ninety three, he said, we have to go to the hospital and I started crying and he just he put his hand on my shoulder and he said, not from you, not from you. I'll take tears from everyone else, but not from you. We had to carry him to the car and then take him to the emergency room and we knew what that meant. He was going to die. And we sat there watching that little machine on the wall that beeps, and it got lower and lower and lower until it

Others, like ballroom Legendarcine Pendarvis, lost their chosen families. She remembered the moment she said goodbye to her legendary house mother, Avis Pandavis.

But losing Avis took so much out of me. The wind was knocked out of me. But I remember her telling me that she was tired and she wanted to be with her mother and her sisters. And in that moment, I knew that she was going to leave me. And she said to me, it's alright, Racing, it's all right. And I said, Avis, if you're tired, let go, Let go you and got to hold or no more. Your job has been done. You served us as an excellent mother. Well,

Aids had shaped an entire generation of queer people. Grieving the loss of your partner at twenty thirty or even forty years old was not normal. Not to mention the grief of losing friends, the chosen family you finally made after escaping your old life after years of loss, the AIDS crisis began to take its toll on everyone. Here's

We lost one a week, so in the seven years I was there that he lost about three hundred and fifty clients. We created a chapel and we took I eight by eleven photographs of everybody who we called a member, anyone who came into the group, and men and women who IT died. We put their pictures up, began the ceiling, and when I left, every instant space in that chapel was covered with pictures of men and women.

Who IT died.

I had to stop. That was forty and exhausted, and I was at a retreat, Trappist religious retreat center in Oregon, and I found myself on the floor of my little room in the fetal position, crying, and I knew I had to stop. I didn't want to I felt some way I was betrayed, but I'd given fifteen years to it. I was psychically exhausted by the death, and because the death came at our agency and my my friends so often, you can't fully grieve.

That some had to face the harsh reality of planning for their own death. Here's Olympic diver Greg luganis again.

I'm not much for surprises. I'm not crazy about surprises. But my thirty third birthday, I was wasting, you know, I was losing weight. We couldn't figure out what was going on. We didn't know, and so I gave my address book to my then partner and my mom and said, naked, throw me a surprise birthday party. The surprise was going to be I didn't know who was going to show up, but I thought I was saying goodbye to everybody.

I was prepared to die.

I wasn't prepared to live.

By the mid nineties, the community was exhausted. Nineteen ninety four was the worst year of death yet. But even through their fatigue, activists kept fighting for treatment, fundraising for research, and persevering for all the loved ones who were lost. Peter Staley, who was an act UP was now a member of TAG, short for Treatment Action Group. They were working very closely with scientists and the Clinton administration when a breakthrough happened in nineteen ninety six at the annual

We were getting over a billion dollars a year. We had money to burn, and we just had to spend it wisely and do the right research. And the TAG was intimately involved with the development of this new class of antivirals called protease inhibitors. And then many of us were in the room when the results got released. We had been through so many moments of dashed hope, so many moments that it was it was very hard to believe. But we also at that point were very adept at

Today, the landscape around HIV and AIDS is completely different. It's no longer a death sentence, and it's largely preventable with breakthrough drugs like prep All. This means that the fear of HIV is slowly fading away. Amazingly. Experts say a cure isn't as far away as we think. In fact, it might be here in the next ten years. One of my favorite moments of this entire series was when I asked Peter Staley what he thinks that day is going to be like for him when they find a cure.

Oh?

My god, amazing. There's a scene at the end of Longtime Companion, a beautiful tear jerker AIDS film, where they ending in like a dreamlike sequence when AIDS is cured and it's all on fire Island's beach and all the characters who have died during the film. They're all back and everybody's hugging each other, so I think there'll be a lot of remembering of those we lost.

But We Loved is hosted by me Jordan Gonsolves. New episodes drop every Wednesday. If you want to write in to tell your story, email us at Butweloved at gmail dot com, or you can send me a message on Instagram or TikTok at your underscore goosolves. 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 pat Emily Meronoff, and Christina Loranger. Our executive