Brooke Gladstone: During the height of the COVID pandemic, it was sometimes likened to an earlier plague that affected some communities more than others, tying the medical establishment up in knots. The AIDS epidemic emerged some 40 years ago, and has since killed over 40 million people. Yes, there are now available medicines that prove an AIDS diagnosis need no longer be a death sentence, but thousands of people, including here in the US, still get infected with HIV, and plenty still die of AIDS, and the hurts still lingers, and the questions about why it took the authorities so long to respond to the epidemic.
That's why we decided to share this episode from our colleague here at WNYC, Kai Wright. Kai hosts the weekly show, Notes From America. He also helms a new short-run series called Blindspot: The Plague in the Shadows, which unfolds a powerful story about the media, as much as anything, that helps explain why we as a culture took so long to get who and what was really at risk from AIDS for far too long. Here's Kai.
Valerie Reyes-Jimenez: Hi.
Kai Wright: Yes, Valerie.
Valerie Reyes-Jimenez: So nice to meet you.
Kai Wright: Valerie Reyes-Jimenez remembers how it all started.
Valerie Reyes-Jimenez: This block has changed so much.
Kai Wright: Or at least when they first started to notice it.
Valerie Reyes-Jimenez: We said that people had the monster because they had that look. They had the sucked in cheeks. They were really thin. A lot of folks were saying, "Oh, they had liver cancer. They had cancer, that's what they died from.
Kai Wright: Because you couldn't name it yet, they called it the monster, or grid, or at another part of town, maybe the gay plague. Mostly, though, you avoided talking about it at all, until you just couldn't anymore.
Valerie Reyes-Jimenez: People just started disappearing. One day they were there, then the next day they were gone. These 20 people that used to hang out in this building shooting up, they're all gone, like carwash, [unintelligible 00:02:15], all these people, they're all gone. Where did they go? It was pretty insane. A lot of people died, a lot.
Lizzy Ratner: When you say a lot, how many people, off the top of your head, do you think you knew at that point who had died?
Valerie Reyes-Jimenez: At least 75 people from the block alone.
Lizzy Ratner: I was not expecting that.
Valerie Reyes-Jimenez: Yes, at least 75 people from the block alone, in about maybe a period of 8 to 10 years.
Kai Wright: We don't know the exact details of when and where HIV entered human life, the particular onset of a pandemic that, as of now, has killed over 40 million people, but we do know that Valerie's neighborhood in lower Manhattan was one of the first places on the planet that the virus began to spread rapidly and to kill prolifically. That's for a lot of reasons. There were the political and economic choices that also allowed poverty to spread across places like lower Manhattan.
Valerie Reyes-Jimenez: It was gritty, it was dirty. Every block had abandoned buildings. When I say abandoned, there were burnt-out buildings, there were empty lots.
Kai Wright: There were more intimate evils, shame, depression, addiction. Injection drugs turned out to be one of HIV's most efficient pathways in America. According to one study, within a few years of the epidemic start, about half of all the people who were injecting drugs in New York had contracted HIV.
Valerie Reyes-Jimenez: My husband at the time, he got HIV because he was out on the street. He did a lot of drugs. I wasn't an IV drug user, but he was. By the time we had the kids, he had stopped, but it was already too late.
Kai Wright: I'm Kai Wright, welcome to Blindspot: The Plague in the Shadows, stories from the early days of AIDS, and the people who refuse to stay out of sight.
HIV changed the world. It burst on the scene in the early 1980s as a mystery illness that completely confounded scientists, and it killed, is still killing tens of millions of people. It tore apart families and communities and whole nations. It has hung as a permanent cloud over intimacy, and love, and lust for generations of people like myself, and it is still with us.
In this series, we will revisit the AIDS epidemic at its onset in the United States. You'll hear from people who have lived it, who struggled to sound the alarm when few others would listen. Over the next six episodes, we'll consider what could have been different. What part of the pain and the loss in this history could have been avoided?
Valerie Reyes-Jimenez: My mom still lives here. This is where I grew up. I bet you if I whistle, she'll come up [inaudible 00:05:47] I was a street girl. I grew up right on Avenue C. I'm a lower-side girl. Native New Yorker. I'm a Nuyorican through and through.
Kai Wright: Valerie, like any good New Yorker, wraps her neighborhood hard.
Valerie Reyes-Jimenez: There was Johnny-on-the-Pony. We used to play [unintelligible 00:06:09].
Kai Wright: She loves it still all these years later because it shaped her as a Puerto Rican girl, pounding the streets, hanging around with a hot guy in a sweet ride.
Valerie Reyes-Jimenez: He had a really nice car. It was like a muscle car, red with black stripes, the 1970. It was a sweet ride. It was, yes. [laughs]
Lizzy Ratner: Valerie, what's that laugh?
Kai Wright: This is Lizzy Ratner. She's from The Nation magazine. She's the lead reporter on this project, and is going to join me in telling the story.
Lizzy Ratner: What is that laugh about?
Valerie Reyes-Jimenez: I was just thinking back to just sitting in the car and taking those rides and stuff. In the beginning, it was sweet. It was shiny and fun, but then later on, it wasn't so fun.
Kai Wright: Heroin was cheap and plentiful, and as we know, highly addictive, and it was just everywhere in Valerie's neighborhood.
Valerie Reyes-Jimenez: It was surrounded by drugs everywhere. Every corner you went to, every other building you went to, people were just out there calling out the names of the drugs that they were selling, and people were strung out. There was just no ifs and buts about it. There wasn't a family that wasn't affected by it.
Kai Wright: Valerie thinks in all likelihood, she contracted the virus herself back in December of 1981, when she was 16 years old, and not long after she started riding around in that red muscle car with the guy she would eventually marry.
Valerie Reyes-Jimenez: I got with him in July of 1981. That Christmas, I had gotten so sick. I remember because I couldn't go anywhere. It was like the worst flu I ever had in my life.
Lizzy Ratner: You think that was like the initial HIV infection?
Valerie Reyes-Jimenez: I believe so. I believe so.
Kai Wright: It wasn't until 1989 that she discovered she's HIV positive. That doesn't mean she had AIDS, that's when your immune system fully breaks down, but she had known for years that something was up with her body, with all these constant persistent infections.
Valerie Reyes-Jimenez: [chuckles] I figured, "You know what, let me get tested."
Kai Wright: She went to the doctor's office and asked for a test, but the doctor hesitated because they were following the conventional wisdom, AIDS was a gay disease.
Valerie Reyes-Jimenez: They were like, "Oh, but you don't even fit the criteria, you've been with the same guy." I was like, "Just test me, please. Just give me the damn test." [laughs]
Kai Wright: Valerie's instincts were right.
Lizzy Ratner: Did you have a moment of freak-out?
Valerie Reyes-Jimenez: Not a freak-out. It was more like a, "Come here virus. We're going to have a talk, you and I. We're going to suss this out. We're going to come to an agreement. I'm going to let you live in my body, and you're going to let me live. We're going to hang out. We're going to do this together. You get it? You got it? Good." [chuckles]
Lizzy Ratner: How early on did you have that?
Valerie Reyes-Jimenez: Oh, right away, within the first 72 hours.
Lizzy Ratner: Then what did that mean then in practice in your life?
Valerie Reyes-Jimenez: I guess became a positive woman. [laughs] I'm a positive woman in many aspects. [laughs]
Lizzy Ratner: Seriously.
Valerie Reyes-Jimenez: In many ways.
Kai Wright: Valerie became an AIDS activist, working on addiction and housing in her own community at a group called Housing Works. She dedicated a lot of her life to combating stigma-
Valerie Reyes-Jimenez: We've got a t-shirt, "I'm HIV Positive".
Kai Wright: -to being a positive woman in public.
She took the virus on, and you could say, she won, but that has not been the story for everyone. For so many people, for so much of this country's history with AIDS, this epidemic has been a story of avoidance. After a break, the opening months of AIDS in America, and how a set of perceptions emerged that still define our response to it today.
The AIDS epidemic snuck up on America at a particularly opportune moment in our national history.
President Ronald Reagan: It's morning again in America. Today, more men and women will go to work than ever before in our country's history.
Kai Wright: The early 1980s marked the onset of President Ronald Reagan's revolution, as it was called, and this famous campaign ad said it all.
President Ronald Reagan: This afternoon, 6,500 young men and women will be married.
Kai Wright: We can all prosper if we just agree to look away, to look away from the hard stuff like the deaths that were happening in Valerie Reyes-Jimenez's neighborhood, and instead, to look ahead.
President Ronald Reagan: With inflation of less than half of what it was just four years ago, they can look forward with confidence to the future.
Kai Wright: It was in this very moment that a new, horrible virus began exploiting all the social ills we chose to no longer see, our bigotries and cruelties around sex, and race, and gender, and poverty. The virus announced its presence to mainstream America in an article that appeared in the back pages of the New York Times.
Dr. Lawrence K. Altman: It was a single-column story. If I recall correctly, it was page 820. I don't remember how many pages there were.
Kai Wright: A story published on July 3rd, 1981, written by the OG of medical journalism.
Dr. Lawrence K. Altman: I am Dr. Lawrence K. Altman, a former science writer and columnist for the New York Times, and covered medicine for the New York Times for nearly 50 years.
Kai Wright: Larry Altman's July 1981 article is often called the first media report on what would become known as AIDS. That's not true. The gay press had already begun talking about an odd series of illnesses that were showing up in the community, and there had been coverage in California newspapers as well. Certainly, Altman's article in the New York Times was a defining moment. It broke the news to the widest audience, made it a real thing, and the way only a New York Times article can do.
Dr. Lawrence K. Altman: The headline read, "Rare Cancer seen in 41 homosexuals. Outbreak occurs among men in New York and California. Eight died inside two years". Then the story began. "Doctors in New York and California have diagnosed, among homosexual men, 41 cases of a rare and often rapidly fatal form of cancer".
Kai Wright: Now, Larry Altman is writing here as a split personality, as a reporter, but also a doctor who practices and sees patients.
Dr. Lawrence K. Altman: As a physician, I had time to do medicine, take time from the times to do that.
Kai Wright: As a doctor, his focus is infectious disease, which is why his antenna is up about this so-called cancer. Over the previous month, Altman had read two notices about it in a publication called The Morbidity and Mortality Weekly Report, or The MMWR. That wonky name is appropriate. It's a biz-to-biz trade publication, but for public health. It's what the federal government uses to update local health departments and doctors in real time about emerging trends. Some doctors who were practicing in cities with big gay populations, they noticed all these young men suddenly getting sick. They didn't know exactly what they were seeing, but right away, they put it in the MMWR.
Heads up, everybody, something's happening. We don't know what it is yet, but here's what it looks like, and let's call it a cancer for the time being. Now, when Larry Altman read about these symptoms, they sounded really familiar. He had practiced medicine at Bellevue, which is a public hospital that treats a lot of poor patients, and he says he'd been seeing these symptoms there since at least the late '70s.
Dr. Lawrence K. Altman: We couldn't determine the cause, and we'd work in the medical jargon. We'd work up every case to the hilt, doing all the tests we knew how to do, and still not being able to determine what they had. We knew what they didn't have, but we didn't know what they had. When we went back and looked, it was clear that they had what we now know as AIDS.
Kai Wright: At this stage, people weren't seeing beyond gay men. What about yourself? What were you seeing at that time? The report you wrote was about the 41 men? Could you see more than that?
Dr. Lawrence K. Altman: Yes, because I had the experience at Bellevue, and we had women who had been former IV drug users, or injecting drug users, and they had the same generalized swollen lymph nodes that men had. To me, I didn't see that it would be limited to the gay men population.
Kai Wright: That's not what he reported. I asked him why he didn't write about what he was seeing in the newspaper.
What do you think, if in the newsroom of 1981, if you had said, "No, I can see it's more than these 41 gay men, and I want to write about women who are drug addicted that I've seen in the past"? How do you think that would've been received amongst your editors?
Dr. Lawrence K. Altman: I think they would have to want to know how that fit into a bigger picture. Was this just an oddity? If it's an oddity, I don't think the Times would've been interested. If you could show that it was part of a broader pattern, then they presumably would've been interested, but we didn't have the evidence then, nobody was reporting it. There was no data reported. Yes, it would be in my mind, but we weren't reporting theory. We were trying to report the facts of what was known.
Kai Wright: The facts were coming from The MMWR, which focused only on gay men.
Do you wrestle at all with the limitation of reporting on what the CDC is establishing versus being able to raise questions about what you were seeing at Bellevue that you couldn't quite prove, but that you were like, "Something else is going on here too."?
Dr. Lawrence K. Altman: We weren't writing personal opinion. We were reporters. I was a reporter. That kind of journalism didn't exist at that time. I wasn't using the word I and writing first-person accounts. It was coming off the news and explaining what was going on.
Kai Wright: Larry Altman's 1981 article was just one link in a really consequential feedback loop that locked into place over the first year or so of this as yet unnamed epidemic. Each time there was another public comment about the gay cancer, doctors who treated gay men would call the CDC and say, "Hey, I have seen this too". This is a good thing, the whole point was to find more cases, but it also steadily narrowed the focus onto who was affected rather than what was happening.
Phil Wilson: People were looking where it was easy for them to look.
Kai Wright: Phil Wilson has been at the Center of AIDS activism in both the gay and Black communities since the opening days of the epidemic. I've known him for decades, and worked with him for many years. Ever since the mid-80s, he's been begging people to see this epidemic in broader terms.
Phil Wilson: You've probably heard me tell the story about the guy who loses his keys. He loses his keys, and he's looking, and he's looking, and he's looking for his keys and he can't find his keys, and another guy comes up and he says, "What are you doing?" He says, "I lost my keys". The guy says, "Where were you the last time you saw your keys?" The guy says, "About a block down the road". The guy says, "Why are you looking here?" He says, "Because the light's better". [laughs] Basically, that's how we were developing narratives.
Tony Fauci: Most people thought about this as, "Well, it's just a gay disease, so we don't need to worry about it. It's somebody else's problem."
Kai Wright: This is Tony Fauci, yes, of COVID fame, but Fauci was head of the federal agency that leads research on infectious diseases for almost 40 years. His first public notoriety came as the Federal Point person on AIDS. He was at the scientific frontline from the start, which means he's been rehashing what went right and what went wrong for decades, including this narrow focus on gay men at the outset.
Tony Fauci: I see where you're going. [chuckles]
Kai Wright: He argues, "Look, you've got to remember that this was an unprecedented epidemic."
Tony Fauci: When you are dealing with a new disease, it unfolds in front of you in real time. What you know, like in June and July of '81, is very different than what you learn in '82, very different what you learn in '83.
Kai Wright: And very different than what we understand now 40-some odd years later.
Tony Fauci: We experienced this as recently as COVID-19. When the first cases that came out, it wasn't appreciated that it was very easily transmitted from human to human. It thought it was like a very inefficient. Then after a few weeks to a month, we found out it was transmitted extremely efficiently. What it means is that you're dealing with a moving target. When you finally get enough information, you look back and you say, "Wow, how long did it take the general population, the public health population, and other people to realize that the target was moving and expanding?"
Kai Wright: As for AIDS, here's what was officially known about the epidemic in the United States by the end of 1981. There were 337 reported cases of people experiencing a sudden collapse of their immune systems. 130 of those people were already dead. For the cases in which a person's sexual orientation was known, a report that summer found more than 90% were gay or bisexual men, almost exclusively in a few big coastal cities. We now know for certain that the epidemic was far wider than gay men already, and estimated 42,000 people were living with HIV in the US alone.
For at least the first couple of years after that, MMWR and Larry Altman's New York Times article, that's where the public conversation began and ended.
Speaker 1: A mystery disease known as the gay plague has become an epidemic unprecedented in the history of American medicine.
Speaker 2: It's mysterious, it's deadly, and it's baffling medical science.
Speaker 3: For disease control in Atlanta, topping the list of likely victims are male homosexuals who have many partners.
Kai Wright: Which meant if you didn't consider yourself part of that group, you saw no reason for this new healthcare to interrupt your morning in America. Even among gay men, you had to be a certain kind of homosexual for this to be your problem.
Gil Gerald: At the end of the face of HIV/AIDS at that point in time was a white gay man, as far as what you read about or heard about, and we didn't see ourselves in that information.
Kai Wright: This is Gil Gerald. He was an early and influential voice of alarm about HIV and AIDS in the gay community, but even if you're familiar with the history of that part of the epidemic, people like Larry Kramer, you've likely never heard Gil's name.
Gil Gerald: I was an accidental leader. I saw myself as somebody who could do the stuff that the charismatic leaders didn't do. I saw, okay, we need a constitution. We need bylaws. I was willing to do the paperwork.
Kai Wright: While Essex and Phil is out here writing waxing poetic, you're like, "Well, I'll make sure the lights are on."
Gil Gerald: Yes, that's exactly right.
Kai Wright: By the late 1970s, LGBT people from around the country had created space for themselves in big cities like New York and San Francisco. Gil Gerald was one of them, but for him and for many Black people, the mecca of queer freedom was Washington, DC. Washington was mired in a similar urban decay as Valerie Reyes-Jimenez describes in Lower Manhattan. In DC, official [unintelligible 00:24:53] neglect created space in which a distinctly Black zeitgeist erupted, and politics and culture and music. Washington emerged in the '70s as Black America's capital city. George Clinton even made an anthem for the moment.
George Clinton: Oh, what's happening, CC? They still call it the White House, but that's a temporary condition too. Can you dig at, CC?
Kai Wright: CC, Chocolate City? Inside this milieu, a specifically Black queer movement emerged as well.
Gil Gerald: People did refer to it as a, this is a new Harlem renaissance that it was happening.
Kai Wright: What brought you into organizing in the community in the first place?
Gil Gerald: The best answer I could come up with is, nobody should take as long as I did to figure out that you're okay.
Kai Wright: Gil was raised in Panama, a child of relative privilege. His dad was a renowned physician there, but his mom was from New York City, and the family settled in Harlem when Gil was a teenager. He went to college in New York, and it was the early '70s, the opening years of the post Stonewall Gay Liberation Movement, just heady days for queer people lay ahead. Young Gil, like probably millions of other college kids at that moment, told his parents, I'm gay. They responded by sending him to a psychiatrist.
Gil Gerald: I went to see Dr. Pauline Edwards in Harlem. She examined me and she saved my life. On my exit interview, she said to me, "Gil, you have problems, but being gay isn't one of them." My father remained convinced that I was sick for most of his life. When he was in his late '80s, he finally invited my husband and myself to Thanksgiving dinner. I was then headed for 60 years of age.
Kai Wright: Wow.
Gil Gerald: This fight went on. I felt a need to change the world, let's put it that way. No kid, no person growing up needed to go through that pain, and so here I am.
Kai Wright: Here I am. That's almost the mission statement of the movement that Gil and his friends initiated in DC. They looked around and they realized, even in George Clinton's Chocolate City, everything about this exciting post Stonewall queer liberation was lily-white.
Gil Gerald: We were confronted with the reality that the political face of the LGBTQ+ community were white gay men. We were invisible.
Kai Wright: The community was no more racially integrated than the rest of the country.
Gil Gerald: What were so-called gay meccas, the DuPont circles, the West Village, the Castro, those were places where we were not very welcome in those parts of America where the gay white community had gone for safety. We weren't that welcome, period.
Kai Wright: In this segregation, these competing and distinct versions of gay liberation, this was the context in which the new gay cancer emerged in 1981. In Gil's circle, when the news broke, what they heard was white gay cancer.
What about in your own lives? Were people seeing their Black gay male friends, and lovers, and associates get sick? Wasn't the epidemic visible to them yet?
Gil Gerald: It was not quite as visible. Certainly people felt very vulnerable at that point in time if they in fact came down with HIV, and so families hid that. There wasn't a whole lot of information about people circulating in the community.
Kai Wright: Gil remembers the moment he made contact with reality though. It was 1983, a year in which the Black LGBT organizing that began back in the late '70s had really matured. They were doing stuff like getting meetings with Coretta Scott King. One evening, Gil was hosting a reception for some Black queer activists at his place in DC, and just before the gathering that day, a white gay activist pulled him aside.
Gil Gerald: He says, "There's something you need to see. There is something called The MMWR report from the Centers of Disease Control. You should see this. This is something that you might want to bring to the attention of the organization."
Kai Wright: This latest report broke down the most recent numbers on AIDS cases in the country, and it said 26%, or the 1 in 4 of the reported cases, were among Black people. If you compare that to the Black share of the overall population, that's more than double. Which means even in the official narrative, never mind all the unreported cases, the story of AIDS was already about way more than white gay men in a couple of cities, but nobody wanted to hear that. Certainly not the people gathered at Gil's reception.
Gil Gerald: I read this report to them. I said, "This is what the report says," and I was totally dismissed. Was totally dismissed. I got told, "Only if you sleep with white men." They all spoke to the possibility that this was a government plot to change our sexuality. It was the first indication to me that there was a lot of work to be done. Some of the people who were in that room became, by 1986, they were really, really mobilized, but by then, most of the men in the room were infected, and most of them are passed away, unfortunately.
Kai Wright: In our bodies, AIDS represents a total collapse of the immune system. The HIV and AIDS epidemic reflected something similar in American life, just a system's wide failure. AIDS was not just a medical crisis, it was, and it remains, a social disease, one that exploits the inequities that already defines so much of American life.
Speaker 4: We literally had to convince the federal government that there were women getting HIV.
Kai Wright: In this series, you will hear from extraordinary people, priests and doctors and nurses and activists, people who were told to stay out of sight to remain in the shadows of America's dawn, and who refused?
Speaker 4: It was activists, we changed the world.
Speaker 5: Stigma was high. Stigma was so high that people were almost abused.
Speaker 6: They're people. They're not drug users, they're not patients, they're not hemophiliacs, they're people.
Speaker 7: Yes, we are being victimized, but we are not victims, we're models of resistance.
Speaker 8: I remember one little boy said, "If I didn't have HIV, I wouldn't have met you guys.
Kai Wright: One thing that I've been reminded of while revisiting this history, is that the people who lived it, they are protective of it. There are sacrifices that have never been named, let alone celebrated, wounds that have never healed. This was evident when we sat down with Dr. Margaret Heagerty who ran the pediatrics department at Harlem Hospital in the 1980s.
Dr. Margaret Heagerty: What are you going to do with this? When you get all done and reach heaven, and Peter says, "What did you do with AIDS?" What is it you're going to do with him, or what do you hope will happen from it?
Kai Wright: I don't know.
Dr. Margaret Heagerty: I want to make sure you're not exploiting.
Kai Wright: I can speak for me. I spent from '96 until probably about 2008, all I did was report on AIDS, but it was at a time when people had decided, and I'm gay, I'm a gay man, and people had decided that the epidemic was over. I don't know if you remember that New York Times magazine covers piece in 1996, right after the meds came out, that said, "The end of the plague."
Dr. Margaret Heagerty: No, I didn't see it.
Kai Wright: It just pissed me off.
Dr. Margaret Heagerty: I can imagine. That would piss me off too.
Kai Wright: The short story is that it became a bit of my life mission to tell a story that it wasn't over, and that it's not over, and that there's a lot to be learned, particularly about when we think about the epidemic amongst Black people and poor people. That's the farthest as I've got in my life to think about what I'm going to do with it, but I just feel like I have to keep telling it.
Dr. Margaret Heagerty: Good enough. Go and get through the day. Let's start at the beginning.
Kai Wright: Please.
Dr. Margaret Heagerty: You ever been to Harlem Hospital?
Kai Wright: We go there next, inside a pediatric ward in Central Harlem on Blindspot: The Plague in the Shadows.
Speaker 9: This is 136 [inaudible 00:34:54] This is an accessible station. The alligator is back [inaudible 00:35:02]
Brooke Gladstone: That's Kai Wright with an episode from the series called Blindspot: The Plague in the Shadows, about the early days of HIV/AIDS, available everywhere. On this week's show, the end of the Ron DeSantis campaign has some lessons to teach us about how to cover presidential candidates. See you Friday. I'm Brooke Gladstone.
[00:35:46] [END OF AUDIO]
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