HIV/AIDS changed the United States and the world. It has killed some 40 million people and continues to kill today. This week, reporters Kai Wright and Lizzy Ratner from the podcast Blindspot: The Plague in the Shadows take us back to the early years of the HIV epidemic in New York City and show how the virus tore through some of our most vulnerable communities while the wider world looked away.
Wright begins by looking at the initial media coverage of HIV, as well as the first health bulletins circulated by the medical community. Both focused on the spread of the virus within the gay men’s community, creating a feedback loop that resulted in other vulnerable groups being overlooked – including women, communities of color and children.
Then Ratner tells the story of Katrina Haslip, a prisoner at a maximum-security prison in upstate New York in the 1980s. Haslip and other incarcerated women started a support group to educate each other about HIV and AIDS. The group was called ACE – for AIDS Counseling and Education – and it advocated for women, minorities and prisoners who were being overlooked in the nation’s response to the epidemic.
In the final segment, we learn how Haslip took her activism beyond prison walls after her release in 1990. She joined protests in Washington and met with leaders of the Centers for Disease Control and Prevention in Atlanta. One of the main goals was to change the definition of AIDS, which at the time excluded many symptoms that appeared in HIV-positive women. This meant that women with AIDS often did not qualify for government benefits such as Medicaid and disability insurance.
The podcast series Blindspot: The Plague in the Shadows is a co-production of The History Channel and WNYC Studios.
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Listen: Blindspot: The Plague in the Shadows (WNYC Studios and The History Channel)
Credits
Reporters: Kai Wright and Lizzy Ratner | Lead producer: Michael I Schiller | Editor: Taki Telonidis | The Blindspot team: Emily Botein, Karen Frillmann, Ana Gonzalez, Sophie Hurwitz and Christian Reedy | Music and sound design: Jared Paul | Additional music: Isaac Jones | Additional engineering: Mike Kutchman | Sound design for Reveal: Jim Briggs and Fernando Arruda | Executive producers for The History Channel: Jesse Katz, Eli Lair and Mike Stiller | Production managers for Reveal: Steven Rascón and Zulema Cobb | Digital producer for Reveal: Nikki Frick | Interim executive producers for Reveal: Taki Telonidis and Brett Myers | Host: Al Letson
Support for Reveal is provided by the Reva and David Logan Foundation, the John D. and Catherine T. MacArthur Foundation, the Jonathan Logan Family Foundation, the Ford Foundation, the Hellman Foundation, the Robert Wood Johnson Foundation, and the Park Foundation.
Transcript
Reveal transcripts are produced by a third-party transcription service and may contain errors. Please be aware that the official record for Reveal’s radio stories is the audio.
| Al Letson: | From the Center for Investigative reporting and PRX. This is Reveal. I’m Al Letson. Today we’re going back in time to a moment when a deadly virus was spreading in America. No, not the coronavirus. Think a few decades earlier. |
| Speaker 2: | It’s morning again in America. Today more men and women will go to work than ever before in our country’s history. |
| Al Letson: | It’s the early 1980s and Ronald Reagan has just been elected president on the promise that better days were ahead for this country. This famous campaign ad said it all. |
| Speaker 2: | This afternoon, 6,500 young men and women will be married. |
| Al Letson: | We can all prosper if we agree to look away, to look away from the hard stuff and instead to look ahead. |
| Speaker 2: | And with inflation at less than half of what it was just four years ago. They can look forward with confidence to the future |
| Al Letson: | Except that at the same time a mystery illness was spreading that completely confounded scientists, AIDS. The disease killed tens of millions and people are still dying. It’s torn apart families and communities and whole nations. It is hung as a permanent cloud over intimacy, love, and lust for generations. And to this day, when most people think of AIDS, they think about gay men. But according to Kai Wright, host of WNYC’s Notes from America, and Lizzy Ratner, the Nation magazine’s deputy editor, that oversimplification, that AIDS is a gay disease is a dangerous one. They’ve created a series called Blindspot: The Plague in the Shadows. It’s a collaboration between the History channel and WNYC, and it looks at the early days of AIDS and how entire segments of American society were overlooked by researchers and policymakers and what that’s meant for the people who were ignored. Here’s Kai. |
| Kai Wright: | 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….: | It was a single column story. If I recall correctly, it was page A20. 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….: | 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, but 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 in the way only a New York Times article can do. |
| Dr. Lawrence K….: | The headline read, “Rare Cancer Seen in 41 Homosexuals. Outbreak occurs among men in New York and California. Eight died inside two years.” And 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….: | As a physician, I had time to do medicine, take time from the Times to do that now- |
| Kai Wright: | And 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 and 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. And 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 seventies. |
| Dr. Lawrence K….: | And 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. And 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….: | 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. So to me, I didn’t see that it would be limited to the gay men population. |
| Kai Wright: | But that’s not what he reported. So 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….: | I think they would have to want to know how that fit into a bigger picture. Was this just an oddity? And 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. So 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: | And 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….: | We might have… 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 writing 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.” And 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. And ever since the mid-eighties, 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. So 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.” And the guy says, “Where were you the last time you saw your keys?” And the guy says, “About a block down the road.” And the guy says, “why are you looking here?” And he says, “Because the light’s better.” Basically that’s how we were developing narratives. |
| Tony Fauci: | Most people thought about this as, “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. And so his first public notoriety came as the federal point person on AIDS. He was at the scientific front line 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 when you’re going. |
| Kai Wright: | And he argues, “Look, you 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. And what you know like in June and July of ’81 is very different than what you learn in ’82. Very different what you learned 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. So what it means is that you’re dealing with a moving target and when you finally get enough information, do 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, an estimated 42,000 people were living with HIV in the US alone. But 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 7: | A mystery disease known as the Gay Plague has become an epidemic unprecedented in the history of American medicine. |
| Dan Rather: | It’s mysterious, it’s deadly, and it’s baffling medical science. |
| Speaker 7: | Center 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 health scare to interrupt your morning in America. And even among gay men, you had to be a certain kind of homosexual for this to be your problem. |
| Al Letson: | But it wasn’t just a gay men’s problem, it was women, it was Black people, heterosexuals, it was Latinos, it was children. AIDS did not discriminate. When we come back, more voices from the podcast Blindspot: The Plague in the Shadows. |
| Maxine Wolfe: | We literally had to convince the federal government that there were women getting HIV. We actually had to develop treatment and research agendas that were about women. |
| Al Letson: | How women struggled to be seen as victims of the deadly disease. You’re listening to Reveal. |
| From the Center for Investigative Reporting and PRX, this is Reveal. I’m Al Letson. This episode, we’re bringing you stories from the early days of AIDS and the fight to get policymakers to pay attention to communities that were hit hardest. It’s from a podcast series called Blindspot: The Plague in the Shadows. By the late 1980s and the early 90s a surge of activism had begun to make progress on AIDS. Public awareness was growing and elected officials could no longer ignore it. In 1990, Congress passed the Ryan White CARE Act, which provided over $200 million in its first year to fund care and treatment for low income people living with HIV. It was an enormous milestone, but one that overlooked an important group of people. Lizzy Ratner from the Nation magazine explains. | |
| Lizzy Ratner: | Here’s the problem, amid all these promising new developments, the money that was going to support poor people with HIV, the funding that was going to fight the disease, there were a bunch of people who were being left out, women. Studies on HIV and AIDS clinical trials to test new treatments, medical conferences, those were all about men and the very definition of AIDS itself didn’t include symptoms that were being experienced specifically by women. This story begins inside a maximum security prison for women. |
| Speaker 11: | We were these supposedly criminals, the outcast of society that was responding to the epidemic in a way that some communities out here were not even responding and that really made us hype. |
| Lizzy Ratner: | One name kept coming up at the center of this story. |
| Interviewees: | Katrina. |
| Katrina. | |
| Became obsessed with who is Katrina Haslip. | |
| Katrina was an inspiration to all. | |
| Lizzy Ratner: | Katrina Haslip, she was only in her twenties when she arrived at the Bedford Hills Correctional Facility. She grew up in Niagara Falls, one of 11 kids. In her late teens, she found Islam and married a religious man and moved to Brooklyn. But by the age of 21 she’d moved back to Niagara Falls and fallen pretty deep into an addiction to heroin. She could stay out on the streets all night and still somehow managed to go to college in the morning. She soon started doing sex work and stealing, and the word was that she could lift a wallet off of anyone. She ended up getting arrested for pulling a knife on a client, and that is how in 1985 she ended up in a maximum security prison for women in Upstate New York. |
| Judith Clark: | Katrina was very fiery and she had a real temper. |
| Lizzy Ratner: | Judith Clark, she met Katrina in solitary confinement, the prison’s prison at Bedford Hills. |
| Judith Clark: | I think she got into a scuffle with an officer is my memory of what led her there. And I remember her saying something like, “Oh God, it was worth it.” |
| Lizzy Ratner: | Oh my God. |
| Judith Clark: | With this great big smile on her face. |
| Lizzy Ratner: | Judy was also in prison at Bedford and the crime that got her there, it was a big deal. |
| Dan Rather: | News with Dan Rather. Good evening. Echoes of the violent radical underground of the 1960s rolled over the New York suburb of Nanuet today in the botched ambush of an armored car that left one guard and two policemen dead. Among the four suspects. |
| Lizzy Ratner: | The Brinks Robbery. It was a crime committed by an offshoot of the far-left Weather Underground. Three people were killed. Judy was driving the getaway car and she and Kathy Boudin were among the four people arrested. Judy was sentenced to 75 years to life in prison. |
| Judith Clark: | Our cells were very bare cinder block walls and a solid door, and then a small window on the other side that had a lot of mesh on it. |
| Lizzy Ratner: | It sounds terrifying. |
| Judith Clark: | It was. |
| Lizzy Ratner: | In solitary confinement, they were allowed just one hour a day outside. And most days Judy would walk laps around the track alone. And then after a few months, suddenly this woman appears. |
| Judith Clark: | She’s beautiful and very elegant. She wore a head wrap, she wore a long dress. And was incredibly stylish. There are people who managed to be stylish in prison and Katrina was one of them. |
| Lizzy Ratner: | Something between the two women clicked. They were both grappling with their lives before prison. What they had done every day they would walk and just talk. |
| Judith Clark: | She told me a little bit about her life and about her own struggle toward recovery, having gone through a period of addiction. On the one hand, she’s incredibly intelligent. She was a practicing Muslim. But she had this fire and it could get her in trouble. |
| Lizzy Ratner: | And that is what drew them together and got them to start organizing in prison. |
| Dr. Sheldon Lan…: | Let’s take a look at the issue of AIDS in prisons. |
| Lizzy Ratner: | This is Dr. Sheldon Landesman, and he’s speaking at a forum in 1987. |
| Dr. Sheldon Lan…: | A huge percentage of the persons in the prison system, and I can’t get a good handle on the number, anywhere from 70 to 80%, have used drugs prior to coming to prison. We know from a variety of studies that, at a minimum, 50% of the intravenous drug users in the New York City and surrounding area are infected with the AIDS virus. Taking the most conservative estimates- |
| Lizzy Ratner: | AIDS was becoming a huge problem in the prison system and not just among injection drug users. The New York Department of Health tested women as they were entering the prison system in 1988. It found that fully 18.8% of women tested positive for HIV. That is almost one in five women, higher than the rate for men. And these numbers, they were probably an undercount. In Bedford, so many women had fallen sick and disappeared that rumors were running wild. |
| Awilda Gonzalez: | Nobody know the hell was going on. |
| Lizzy Ratner: | Meet Awilda Gonzalez. |
| Awilda Gonzalez: | Everybody calls me Windy. |
| Lizzy Ratner: | Windy, got to Bedford around the same time as Katrina, in 1985. She was in for possessing and selling drugs. And when she arrived, she found everyone on edge. |
| Awilda Gonzalez: | Many women bully other women, harass them, beat them, shame them, blame them. Their own fear because at one point we all looking at this woman and saying, “Wait a minute, how many times did I share a needle?” See, but how many times did you make love to somebody and they didn’t tell you or they didn’t know? |
| Lizzy Ratner: | There was still a lot of confusion around how you got HIV. But there was one thing that everybody knew. If you got infected, you died. |
| Judith Clark: | No one wanted to be seen going to the medical department for anything because they were afraid that people would say, “Oh, she’s an AIDS bitch.” |
| Lizzy Ratner: | Windy worked as a hairdresser in the prison hair salon and she was starting to get lots and lots of questions. |
| Awilda Gonzalez: | My scissors, the knife that I used to do certain styles in the hair and woman questioned me, “What are you doing to disinfect this?” And I say, “I need to educate myself.” |
| Judith Clark: | Either people were going to turn against each other, as was happening, or people were going to be able to seek each other. |
| Lizzy Ratner: | The women started organizing to put together a meeting. You didn’t have to be HIV positive to join. |
| Judith Clark: | We wanted women among the druggies. We wanted women among the good old Christians. We wanted white women, we wanted Hispanic women, we wanted Black women. We wanted religious, we wanted non-religious, we wanted hippies. |
| Lizzy Ratner: | Katrina was part of that initial organizing group. She worked in the law library and so she began spreading the word to other women. Soon they had 30 people who were interested. Here’s how she described that first meeting in a documentary a few years later. |
| Katrina Haslip: | So we went around introducing ourselves and about the third woman, she said, “My name is Sonya and I have AIDS.” And I had never heard anybody say that before out loud, and I don’t think anybody else in the room had heard anybody else say that out loud. And the room went silent and then people engulfed her. And it made me cry because it was like there was so much support in the room for this person who was able to say, “I have AIDS.” And I thought to myself, “I can never say that.” |
| Lizzy Ratner: | Katrina had tested positive for HIV a few months before this meeting, but she was not ready to be public about it. |
| Judith Clark: | She told me, she told a couple of other friends. |
| Lizzy Ratner: | Judy Clark. |
| Judith Clark: | It’s all in nothing there. I think really once she decided that it was too much effort to keep it secret, it liberated her. She then could have a voice and a role. And we were connected by then to people on the outside who were also powerfully raging a struggle, and she loved the idea of that struggle. And so I think it gave her a sense of purpose and identity that was part of her own self-liberation. |
| Lizzy Ratner: | At a meeting one day, Katrina got up in front of everyone and she told them. |
| Katrina Haslip: | And people’s mouths dropped because they seen me as this Muslim. They seen me as this girl who jogs in the yard all the time. I was the law library clerk. So no, I was straight. So how did she get affected? And so I said to them, “Close your mouth.” |
| Awilda Gonzalez: | Katrina never complained about nothing. She would come with her little fragile herself and her little notebook. Feisty, fair, soft-spoken. Katrina, little piece of chocolate. Her skin was so chocolate-like, nice and stuff. Very analytic. While we all going off, she was sitting down listening. |
| Lizzy Ratner: | Because Wendy was a hairdresser. She knew everybody, so she was also recruited to join the group. |
| Awilda Gonzalez: | We were so blessed to really establish something that helped us survive at that time and be creative and be productive because society forgot about us, like they forget. Once you go to prison, that’s it. Especially a maximum security. They don’t care what happened to us, we just dogs. |
| Lizzy Ratner: | But the women, they did care about what happened to each other, and so they would talk openly in these meetings about their fears and their symptoms and how to protect themselves. Here’s Wendy leading a workshop at the prison in Bedford. |
| Awilda Gonzalez: | Okay, [foreign language 00:26:05] Rosa, [foreign language 00:26:10]. Okay, [foreign language 00:26:14]. |
| Lizzy Ratner: | She’s talking about safe sex. |
| Awilda Gonzalez: | [foreign language 00:26:20]. |
| I am the greatest sex educator ever, honey. | |
| Lizzy Ratner: | By this point the group had a name for itself. They called it AIDS Counseling and Education or ACE for short. It was the first known AIDS group for women in the nation and it was formed in a prison. It was the beginning of what would become Katrina Haslip’s life’s work. |
| Katrina Haslip: | I represent the excluded and underrepresented groups of women, minorities, and HIV positive individuals and also prisoners of which I am a member of all of the above. |
| Lizzy Ratner: | Pretty soon people outside of Bedford began hearing about Katrina’s work. One of them was Terry McGovern. She founded the HIV Law Project in Lower Manhattan. |
| Terry McGovern: | So when these women started to come in, a number of them had been incarcerated at Bedford Hills and they were all talking about this jailhouse lawyer who had helped them, Katrina Haslip. And whenever they said Katrina Haslip, they would get these broad smiles. So I became obsessed with who is Katrina Haslip? |
| Lizzy Ratner: | Terry would soon get to find out because it was September of 1990 and Katrina was about to be released from prison. Judy Clark was still inside. |
| Judith Clark: | She was very clear that when she left Bedford, she was going to be part of the movement outside. She was going to bring the voices of women and Black women to that movement, that she saw that it was a predominantly white movement at that point. |
| Al Letson: | Katrina would do almost anything to get those voices out there, including breaking her parole. |
| Protesters: | Killing by omission. Change the definition. |
| Al Letson: | When we come back more from Blindspot: the Plague in the Shadows. You’re listening to Reveal. |
| From the Center for Investigative Reporting and PRX, this is Reveal. I’m Al Letson. Katrina Haslip was a prisoner in New York state when she helped organize an AIDS group for women. She was determined to take her advocacy to the national stage as soon as she got out. Reporter Lizzy Ratner from the podcast Blindspot: the Plague in the Shadows explains how Katrina went about doing that. | |
| Lizzy Ratner: | On September 10th, 1990, Katrina Haslip was released from the Bedford Hills Correctional Facility. Within three weeks, she breaks her parole by taking a bus to Washington DC to join a massive protest organized by ACT UP. |
| Protesters: | Killing by omission. Change the definition. |
| Lizzy Ratner: | And there’s someone else there, Terry McGovern of the HIV Law Project. |
| Terry McGovern: | I had been to many ACT UP demonstrations, but they were never predominantly women of color with HIV speaking, so it was a different type of demonstration for sure. |
| Iris de la Cruz: | My name is Iris de la Cruz. I’m 37-year-old woman with AIDS. One of the reasons why women remain untreated is because they don’t have Medicaid and they have no access to healthcare. They can’t afford it. |
| Lizzy Ratner: | Terry had just submitted a lawsuit that dealt with precisely that she was suing the federal government for discrimination. Her argument was that the government’s definition of AIDS left out symptoms that affected women. |
| Phyllis Sharp: | I’m Phyllis Sharp from New York. I’m also a plaintiff in this lawsuit against the social security charging them with discrimination against Women. I applied April 1989. I couldn’t work. I constantly have urinary tract infections, chronic fatigue, and I was denied. It’s time they changed the definition of stop killing women denying them all their disability. Thank you. |
| Terry McGovern: | And then suddenly somebody said, “Katrina Haslip is getting off the bus.” |
| Lizzy Ratner: | Terry and Katrina had never actually met before in person. |
| Terry McGovern: | I remember I looked over and there she was and I walked over and we hugged and I said, “Are you nuts? What are you doing here? You’re going to get in trouble with your parole.” And she said, “I don’t give a… Of course I’m here.” |
| Protesters: | US health care [inaudible 00:31:06]. |
| Lizzy Ratner: | ACT UP had organized this demonstration to pressure the federal public health system to recognize women with HIV. Their focus was the fight to change the definition of AIDS. |
| Protesters: | Change the definition. |
| Lizzy Ratner: | Now, to understand this fight, it’s important to remember the basic difference between HIV and AIDS. HIV or human immunodeficiency virus is, well, a virus. It disables your immune system and when it gets really advanced, it can lead to a bunch of illnesses that are collectively known as AIDS or acquired immunodeficiency syndrome. Now, when Centers for Disease Control first came up with its list of AIDS-defining illnesses, it based that list on what they were seeing in men. And it excluded illnesses that were showing up in women like- |
| Interviewees: | Yeast infections one after the other. |
| Pelvic inflammatory disease. | |
| Cervical cancer. | |
| Lizzy Ratner: | And this led to a lot of problems. First, it meant that a lot of women with these symptoms, they didn’t know that they had AIDS or that they might have AIDS, but it also meant that even when a woman knew she was HIV positive and when she was really, really sick, she still couldn’t get an AIDS diagnosis. And this meant that she couldn’t qualify for government benefits like Medicaid and disability and Katrina was one of them. So she joined the campaign by ACT UP to get the CDC to change the definition of AIDS. |
| Katrina Haslip: | So I’ve watched and as an HIV positive woman, I too have suffered some of these symptoms. It’s important for you to know that women are ill prior to any diagnosis of HIV and that they often die of HIV complications without ever meeting the CDC definition of AIDS. |
| Lizzy Ratner: | It’s just a few weeks after the march in DC now, and Katrina is down in Atlanta speaking to a bunch of bigwigs at the CDC. She’s there with Maxine Wolfe. Now, Maxine, she’s not a doctor and she’s not a health professional. She is an activist. |
| Maxine Wolfe: | I had to give a whole list of the assumptions that were underlying the fact that women were not being treated. |
| Lizzy Ratner: | Did you feel like you accomplished stuff and you actually managed to move them in that meeting? |
| Maxine Wolfe: | No, we didn’t feel like we moved them, we felt like we told them what they needed to know. But when we were walking out, Katrina just turned around and looked at them and she said, “I hold you responsible for every woman with HIV who dies, including myself,” and we left. They didn’t say anything, they were just standing there with their mouths open. |
| Tony Fauci: | I can remember, in fact, I’m having a visual film going in my mind right now of when I’ve had a number of women activists come into my conference room on the seventh floor of Building 31 on the NIH campus decades ago. |
| Lizzy Ratner: | Dr. Anthony Fauci, he was the director of the National Institute of Allergy and Infectious Disease, and that meant that he ran AIDS research in the United States. It also made him a target for criticism from activists like the ACT UP people who were in this meeting who were really, really frustrated with how many people were dying and how little the government seemed to be doing about it. |
| Do you happen to remember just one woman who was part of that, Maxine Wolfe? | |
| Tony Fauci: | Oh, yeah. She was a tigress. She was very proactive, maybe even a little aggressive, but when people are not listening to you, retrospectively, you wind up respecting them for being that way. |
| Lizzy Ratner: | Yeah, we’ve talked to a number of women who said that in the late eighties they really had to work to convince their doctors to test them because this idea that women could get HIV just wasn’t out there in the general public that much. |
| Tony Fauci: | I think you somehow or other the message was either not getting to or the general very, very busy private physician who was in a region of the country or who has a population of patients that you would not intuitively feel would be at risk. |
| Lizzy Ratner: | Where do you think the bridge fell apart? What was missing in the translation? |
| Tony Fauci: | If I had a clear-cut answer, Lizzy, I would tell you. I don’t know. It’s as puzzling to me. I think there are multiple complicated reasons why that happens, the lack of people connecting the dots. I’ve been saying it now for 42 years that everybody can be at risk. |
| Lizzy Ratner: | Fauci wasn’t exaggerating. He actually did write an article that was published years earlier and it said that he expected the disease to go beyond gay men. Even so women were still being excluded from treatments and studies. And the medical establishment, it was stubborn, it wasn’t moving. And then in December 1990 activists scored a breakthrough. |
| Dr. Kathy Anast…: | There was a conference finally. Because of all this pushing, there was a conference at NIH about HIV in women. |
| Lizzy Ratner: | Dr. Kathy Anastos was there. She became an AIDS expert through her work at Montefiore Medical Center in the Bronx. It’s almost 10 years into the epidemic, and this is the first national conference that focuses on women. |
| Dr. Kathy Anast…: | A lot of people invited who had been pushing to have more studies of HIV, have any study of HIV in women actually. |
| Lizzy Ratner: | Activists, doctors, researchers, they were all there and they were fired up. They were not going to leave without getting something. |
| Dr. Kathy Anast…: | During that meeting is when Tony Fauci decided that they needed a study of women. |
| Lizzy Ratner: | Finally, a study about women. It didn’t begin until 1993, but it continues to this day and it is the largest study on the progression of HIV in women in this country. |
| But studies take a long time, especially when you have an incurable disease. Katrina had tested positive for HIV three years earlier and her immune system was getting weaker. She was getting sicker. She didn’t have a lot of time and there was a lot that still needed to change, so she kept speaking out. | |
| Protesters: | Y’all ready? |
| Ready. | |
| Ready. Do this, do this. | |
| Y’all ready for this? | |
| Yeah. | |
| So let’s do this. | |
| Help me understand what went wrong. [inaudible 00:38:05] country far too long. I need power. | |
| [Inaudible 00:38:06]. | |
| [inaudible 00:38:09]. I need power. | |
| Why are you here? | |
| Katrina Haslip: | I’m here because I’m an ex-prisoner and I’m also HIV-infected and I learned that status while being confined and I want- |
| Lizzy Ratner: | Katrina’s at an ACT UP protest outside the Department of Corrections in Albany, New York. She’s wearing this fake prisoner costume and she’s got this black leather hat tilted to the side, a nose stud, gold hoop earrings. |
| Katrina Haslip: | And because I want adequate healthcare for prisoners that are left there, and it shouldn’t be a death sentence that they have HIV. I want education for them, peer education. I want them to let out terminally ill individuals due to HIV because that’s like double jeopardy and it becomes a death sentence for those individuals. And if they pose no threat to society, let them out and let them die in dignity. So that’s why I’m here. |
| Lizzy Ratner: | Katrina was a force during this period. She started an HIV support group for women who were getting released from prison and she called it ACE-OUT. She also kept fighting to change the definition of AIDS, and she did this on the one hand with ACT UP through its campaign against the CDC, but she also worked with Terry McGovern on her lawsuit, the one against the government. |
| Terry McGovern: | So I feel like she taught me this concept of joyful resistance. It’s joyful that we get to fight this together. It’s joyful that we’re standing up and resisting. Yes, we are being victimized, but we are not victims, we’re models of resistance. |
| Lizzy Ratner: | But Katrina was more than a model of resistance, she was also an advisor. As the lawsuit was winding its way through the courts, Terry would go to her for guidance. |
| Terry McGovern: | She was my primary strategy advisor. I think she really loved the other women that she saw being mistreated and saw dying. She really was drawn to the law and justice because some part of her just couldn’t ever be okay with this. |
| Katrina was not well for very long on the outside. She kept getting pneumonia and lots of gynecological problems and couldn’t qualify for Medicaid or disability. | |
| Lizzy Ratner: | Even Katrina couldn’t get an AIDS diagnosis, only HIV. |
| Terry McGovern: | So that meant as she got weaker, she didn’t have a home care attendant. And here was, in my view, one of the biggest heroes, I hate that word, but really, and she was falling on the floor with nobody to pick her up. We were sending clients, patients, volunteers to go help her. |
| Lizzy Ratner: | Katrina was in and out of the hospital. |
| Terry McGovern: | She was at St. Luke’s-Roosevelt a lot, and she’d have high boots on and in the bed and I’d be like, “Why are you wearing these high boots?” She said, “I snuck out and went shopping.” And then every time I went to see her, she used to steal my wallet. She’d say, “You missing anything?” She did it a few times. So she was so lively actually and funny and so wanted to live. |
| Lizzy Ratner: | Finally, after years of fighting in the fall of 1992, the CDC offered the activists a deal. They were going to change the definition of AIDS, but it wouldn’t include every symptom the activists had asked for. |
| Terry McGovern: | And they were offering this compromise of bacterial pneumonia, tuberculosis, cervical cancer, and 200 or fewer T-cell. I remember having very serious conversations with her. |
| Lizzy Ratner: | Katrina, from her hospital bed. |
| Terry McGovern: | She felt strongly that we should take it, that it was too important to not take it at this point, especially with the 200 T-cells, that that would bring a lot of people in. And yes, there should be many more things in it, but there’s no time for this, as I remember her saying. |
| Lizzy Ratner: | In October 1992 Terry and the coalition of activists decided to accept the CDC’s offer. Terry raced to the hospital to tell Katrina. |
| Terry McGovern: | Because I wanted Katrina to make a statement. So I told her that the definition was being expanded. And then she gave this statement that was saying, “This never would’ve happened without women standing up for themselves, without activists. This is not the way this should be.” I couldn’t say she was happy, she was dying. She was so angry and wanted the record to reflect that we had to fight tooth and nail to be acknowledged of dying of AIDS. |
| Lizzy Ratner: | The new CDC definition was set to go into effect in January 1993. So if Katrina lived into the new year, she would get the AIDS diagnosis. But she didn’t live. |
| Katrina Haslip died on December 2nd, 1992. She was 33 years old. | |
| Terry McGovern: | For Katrina to die and never get AIDS, given who she’d been, I started to just feel just like shell shocked and sick. |
| Lizzy Ratner: | After three years of fighting, Terry and the activists had won, but Katrina had died and it was too late for scores of other women with AIDS. |
| Terry McGovern: | I really have this recurrent memory of walking into the office here, and it was those pink messages, piles of messages of clients that had died. It felt like everybody was dying and the plaintiffs in the lawsuit were dying, so we were winning, who cares? |
| Lizzy Ratner: | But the victory did matter. The number of women diagnosed with AIDS went up 45% after the CDC changed its definition. And that’s because all of a sudden, HIV-positive women suffering from one of the newly included symptoms, they were being counted as having AIDS. |
| Terry McGovern: | It’s ultimately really weird to win lawsuits for people who are dead. Even when I teach it, I teach at a school of public health. So I try to say, “Here’s why science is not neutral.” Whenever I show that 45% increase slide, I never feel joy. I feel really angry and sad. Most of these women are not around to be in the films. On the other hand, as I have, I hope, been able to describe, I carry them. But nothing about this is okay. |
| Lizzy Ratner: | Did you have a memorial for her in the prison? |
| Awilda Gonzalez: | Yes, we did. And I think we also had the quilt for Katrina. |
| Lizzy Ratner: | Awilda Gonzalez. She was still in prison when Katrina died. She was released a few years later. And she and a group of women, they stitched a panel for the AIDS Memorial Quilt in memory of Katrina. |
| Awilda Gonzalez: | Because the quilt was also part of a therapy every time somebody passed away. So we will get together and design the quilt, and we will sit around a big table to design it and to talk about the person and to share beautiful memories, and just… That was part of our therapy. Katrina was a powerful, determined woman. She fought to the end, and that’s what counts. |
| Judith Clark: | She got the chance to be a movement leader, an eloquent, powerful, incredibly impactful movement leader. |
| Lizzy Ratner: | That’s Judith Clark again. She was released from Bedford in 2019. |
| Judith Clark: | But she didn’t get the chance to then say, “Okay, that’s great, but what about my life and who I want to be?” Which is a challenge that all of us have as we enter life outside of prison. |
| Lizzy Ratner: | Before she died, Katrina wrote the introduction to an oral history of ACE called Breaking the Walls of Silence. And it’s the story of how these women came together and began changing the story of AIDS for women. |
| Awilda Gonzalez: | Katrina, Katrina [foreign language 00:47:28]. Page 10. Okay. Let me see. |
| Lizzy Ratner: | Katrina’s old friends, Wendy and Judy, they’re going to read her words. |
| Awilda Gonzalez: | We were the community that no one thought will help in self, social outcast because of our crimes against society in spite of what society inflicted upon some of us. |
| Judith Clark: | We emerged from the nothingness with a need to build consciousness and to save lives. We made a difference in our community behind the wall, and that difference has allowed me to survive and thrive as a person with AIDS. |
| Awilda Gonzalez: | To my peers in Bedford Hills Correctional Facility, you have truly made a difference. |
| Judith Clark: | I can now go anywhere and stand openly alone without the silence violence. |
| Awilda Gonzalez: | Katrina Haslip, 1990. |
| Lizzy Ratner: | Today, the medical establishment in the United States fully recognizes that women can get HIV and AIDS. The field of women’s health is much more robust, and women with HIV are surviving and, yes, thriving into their fifties, sixties, even seventies. But we have so much farther to go. |
| Al Letson: | To hear other stories from the early days of the HIV and AIDS epidemic, like a hospital that became a makeshift home for kids with AIDS and a woman who set up a DIY needle exchange program in her South Bronx neighborhood. Subscribe to the podcast series Blindspot: the Plague in the Shadows from the History Channel and WNYC Studios. |
| Our episode was produced by Michael I Schiller and edited by Taki Telonidis. The Blindspot team includes Emily Botein, Karen Frillmann, Ana Gonzalez, Sophie Hurwitz and Christian Reedy. Music and sound design for the podcast by Jared Paul. Additional music by Isaac Jones. And additional engineering by Mike Kutchman. The executive producers at the History Channel are Jessie Katz, Eli Lair and Mike Stiller. Victoria Baranetsky is our general counsel. Our production managers are Steven Rascón and Zulema Cobb. Additional score and sound design for this episode by Jay Breezy, Mr. Jim Briggs and Fernando “My Man Yo” Arruda. Our CEO is Robert Rosenthal. Our COO is Maria Feldman. Our interim executive producers are Brett Myers and Taki Telonidis. Our theme music is by [inaudible 00:50:15] Lightning. | |
| Support for Reveal is provided by the Reva and David Logan Foundation, the Ford Foundation, the John D. and Catherine T. MacArthur Foundation, the Jonathan Logan Family Foundation, the Robert Wood Johnson Foundation, the Park Foundation, and the Hellman Foundation. Reveal is a co-production of the Center for Investigative Reporting and PRX. I’m Al Letson. And remember, there’s always more to the story. |