[ARCHIVAL AUDIO MAXINE WOLFE]: 1, 2, 3, 4. Testing, 1, 2, 3, 4. This is the CDC in Atlanta on November 19th, 1990.
LIZZY RATNER: That’s Maxine Wolfe. She’s 49 years old. And she is fierce. She’s just flown down to Atlanta from New York City to meet with experts from the Centers for Disease Control. Now Maxine, she is not a doctor and she’s not a health professional — she is an activist. And she’s come with a tape recorder.
[ARCHIVAL AUDIO MAXINE WOLFE]: You know, I'll make you a copy that you can have.
LIZZY RATNER: I’m Lizzy Ratner. It’s now 1990, and we are nine years into the epidemic. More than 100,000 people have died. Gay men are been getting sick in mind-boggling numbers, but they are also fighting back. But women — the world is just pretty much ignoring women with HIV. So Maxine, she’s been going to lots of these kinds of meetings.
[ARCHIVAL AUDIO MAXINE WOLFE]: What you may not know is we are women who have been focusing on the issue of women and AIDS for years. Years. We are activists. No offense, but we are not impressed by doctors, nor are we impressed by medicine in general, because we know that those two groups have never cared about women.
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.
KAI WRIGHT: To be clear, women could and did test positive for HIV. And technically, the government knew this. The problem was, it wasn’t doing much about it. But Maxine, she and a bunch of other activists were trying to change this.
LIZZY RATNER: Maxine was part of the Women’s Committee of ACT UP. They had been pushing for a meeting with the CDC for months, and now finally they found themselves in a conference room in Atlanta, giving a presentation to some of the foremost experts on HIV and AIDS.
[ARCHIVAL AUDIO MAXINE WOLFE]: So the way we'd like to do it is that Katrina is gonna talk first about some of the issues that she's seen.
[ARCHIVAL AUDIO KATRINA HASLIP]: Women die like six-times faster than men with HIV or AIDS …
LIZZY RATNER: Katrina Haslip. She’s only 31, but she’s already a veteran activist for women with HIV and AIDS. She’s the only Black woman in the room. She’s small in stature, but she commands attention.
[ARCHIVAL AUDIO KATRINA HASLIP]: I don't trust the CDC or its definition because it appears that from a distance people are watching as we progress on, and knowing that these series of symptoms are, in fact, progression to full-blown AIDS, and they're not responding..
LIZZY RATNER: To give you some context as to why Maxine and Katrina had to work so hard to get those people in that Atlanta conference room to see women with HIV, AIDS had been framed as a man’s disease — a gay man’s disease. And so lots of people — from your average member of the public to high-ups in the medical establishment — they just weren’t thinking about women. A lot of them didn’t even know that women could get HIV.
KAI WRIGHT: And the problem went deeper than that. Medicine was a male profession, had been for about as long as anyone could remember, and sexism came with those white coats. Or most white coats, anyway.
[HOWARD MINKOFF AMBIENT SOUND]
KAI WRIGHT: Howard Minkoff was an OBGYN in Brooklyn.
DR. HOWARD MINKOFF: In the ’80s, women were disposable. In those days, most of the women were just not cared about at all, compared to the frail pale male, as the old white guys are called these days [laughs]. There is a difference in the way society weighs their rights and their values. It just became more apparent during the AIDS epidemic.
DR. KATHY ANASTOS: I saw myself as an inside the system activist.
LIZZY RATNER: Dr. Kathy Anastos. She became an AIDS expert through her work at Montefiore Medical Center in the Bronx.
DR. KATHY ANASTOS: Because I was one of the first doctors to speak up about HIV in women and that we needed to know more.
LIZZY RATNER: That lack of knowledge about women and HIV was obvious. Kathy still remembers being at an AIDS conference years into the epidemic.
DR. KATHY ANASTOS: And someone got up, a man, and said, “It's not regular, heterosexual sex that’s transmitting it. All those women must be having anal sex.” And I said, no, that's not actually what the evidence shows. What the evidence shows is that heterosexual sex transmits HIV to women. I don't think he believed me, but he did shut up. (laughs)
LIZZY RATNER: Kathy was used to men not shutting up. She graduated from medical school in 1980 and at the time, only one in four medical students was a woman — and this showed up in the classroom.
DR. KATHY ANASTOS: Anatomy class, first year of medical school, is like 100 medical students there. There’s someone teaching it, a guy, they were almost all guys, and he puts up to teach anatomy, pin-up photos of naked women and he claimed, “Well this is a medical book.”
DR. HOWARD MINKOFF: Women are just not valued, at all.
LIZZY RATNER: As an obstetrician, Howard Minkoff saw that most of the medical community was concerned about women with HIV only when they were pregnant, and even then, they focused mostly just on their babies.
DR. HOWARD MINKOFF: Anybody who cared anything about any of these people cared about the baby. Get the mother out of here, let us take care of the baby. The victim of the epidemic is the baby. They were vectors. They weren't women, they were vectors.
LIZZY RATNER: And what do you think that was about?
DR. HOWARD MINKOFF: People were concerned about the virus getting from a woman. They were completely indifferent to the virus getting to women.
LIZZY RATNER: This might have had something to do with which women were getting sick.
DR. HOWARD MINKOFF: They're people, they're not drug users. They’re people, who lived a normal life, had sexual intercourse, may have had an addiction, and had a tragedy.
KAI WRIGHT: I’m Kai Wright. You’re listening to Blindspot: the Plague in the Shadows: Stories from the early days of AIDS — and the people who refused to stay out of sight.
By the late 1980s and early 1990s, a surge of activism had begun to make progress on AIDS. Public awareness was growing, and elected officials could no longer just ignore it. In 1990, Congress passed the Ryan White CARE Act. This was an enormous milestone in the epidemic, and it provided over $200 million, in its first year, to fund care and treatment for low-income people living with HIV. Today, it remains a crucial part of how care is funded in the United States.
Lizzy Ratner, who’s been reporting this series with me, takes the story from here.
LIZZY RATNER: Here's the problem. Amid all the 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 experienced specifically by women. This story begins inside a maximum security prison for women.
[ARCHIVAL AUDIO KATRINA HASLIP]: We were these supposedly criminals, you know, the outcasts of society that was responding to the epidemic in a way that some communities out here were not even responding. And that made us really hype.
LIZZY RATNER: One name kept coming up at the center of this story.
JUDITH CLARK: Katrina.
MAXINE WOLFE: Katrina.
TERRY MCGOVERN: I kind of became obsessed with, “Who is Katrina Haslip?”
AWILDA GONZALEZ: Katrina was an inspiration to all.
LIZZY RATNER: Katrina Haslip, the woman who spoke at the CDC meeting. She was young. She was only in her 20s 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 she married a religious man and moved to Brooklyn. But by the age 21, she’d moved back to Niagra 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 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, you know, 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.
[ARCHIVE TV NEWS REPORT]: 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.
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: I mean, it sounds kind of terrifying.
JUDITH CLARK: It was.
LIZZY RATNER: In solitary confinement they were allowed one hour a day outside. And most days, Judy would walk laps on the track, alone. 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 ’em.
LIZZY RATNER: And something between the two women clicked. They were both grappling with their lives before prison, what they had done, and so every day they would walk and just talk.
JUDITH CLARK: You know, 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 was 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.
[ARCHIVE AUDIO DR. SHELDON LANDESMAN]: 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.
[ARCHIVE AUDIO DR. SHELDON LANDESMAN]: 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 NYC and surrounding areas are infected with the AIDS virus …
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 entered prison in New York 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 knew what 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: Well, many women bully other women, harass them. Beat them, shame them. Blame them. Their own fear, because at one point, we all looking at these womans 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 everyone knew: if you got infected, you died.
JUDITH CLARK: I mean, 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.
WINDY: My scissors, the knife that I used to do certain, you know, styles in the hair, and woman questioning me, “What are you doing to disinfect this?” And I said, you know what, 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: Well you know, 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.
[ARCHIVE AUDIO KATRINA HASLIP]: So, we like went around introducing ourselves. And about the third woman, she said, “My name is Sonia and I have AIDS,” you know. And I had never heard anybody say that before out loud. And I don't think anybody else in the room had heard anybody say that out loud. And the room went like silent.
[ARCHIVE AUDIO KATRINA HASLIP]: And then people, like, 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,” you know. And I thought to myself, I could never say that.
LIZZY RATNER: Katrina had tested positive for HIV a few months before this meeting, but she wasn’t 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 sort of all or nothing in there. I think really once, once she decided that it was too much effort to keep it secret, it liberated her. Like 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.
[ARCHIVE AUDIO KATRINA HASLIP]: And people's mouths, like, dropped, you know, um, because. Like they see me as this Muslim, you know, they see me as, you know, this girl who jogged in the yard all the time. You know, I was the law library clerk, so no, I was straight, you know, so how did she get infected? You know? Um, and so I said to them, close your mouth.
AWILDA GONZALEZ: Katrina never complained about nothing. She would come with her little fragile self and her little notebook. Feisty. Fair. Soft spoken.
AWILDA GONZALEZ: Katrina, little piece of chocolate. Her skin was so chocolate, like, you know, nice and soft. Very analytic. When we all going off, she was sitting down, listening.
LIZZY RATNER: Because Windy 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 in maximum security. They don't care what happened to us. We're 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 Windy leading a workshop at the prison in Bedford.
[ARCHIVE AUDIO AWILDA GONZALEZ]: Okay, so tengo Violeta, Luz, Rosa, Mileni …
[ARCHIVE AUDIO AWILDA GONZALEZ]: OK, en esta esquina con la cámara como podemos ver, vamos hablar de transmisión sexual. [In this corner with the camera, which we can see, we are going to talk about sexual transmission.]
LIZZY RATNER: She’s talking about safe sex.
[ARCHIVE AUDIO AWILDA GONZALEZ]: Exacto! Si no hay condón, no hay sexo! [Exactly! If there’s no condom, there’s no sex!]
AWILDA GONZALEZ: 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.
[ARCHIVE AUDIO 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 kind of 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 gonna bring the voices of women and Black women to that movement, that she saw that it was a predominantly white movement at that point.
LIZZY RATNER: And Katrina would do almost anything to get those voices out there, including breaking her parole. That’s coming up after the break.
LIZZY RATNER: This is Blindspot: The Plague in the Shadows. I’m Lizzy Ratner. On September 10, 1990,, Katrina Haslip was released from the Bedford Hills Correctional facility.
Within three weeks, she breaks her parole by taking a bus to Washington, D.C. to join a massive protest organized by ACT UP.
[ACT UP PROTEST ARCHIVAL FOOTAGE]: Killing by omission! Change the definition!
LIZZY RATNER: And there’s something else there, Terry McGovern of the HIV Law Project.
TERRY MCGOVERN: I had been to many ACT UP demonstrations, but they were never like, you know, predominantly women of color with HIV speaking. So it was a different type of demonstration for sure.
[ACT UP PROTEST ARCHIVAL FOOTAGE]: My name is Iris de la Cruz. I’m a 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.
[ARCHIVAL AUDIO]: I'm Phyllis Sharpe 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 had urinary tract infections, chronic fatigue. And I was denied. It’s time they changed the definition and stopped killing women, denying them welfare and disability. Thank you. [CHEERS]
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: And, uh, 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 shit, you know, of course I'm here.”
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.
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 the 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…
VALERIE REYES-JIMENEZ: Yeast infections, one after the other.
TERRY MCGOVERN: Pelvic inflammatory disease.
SHIRLENE: 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 things like Medicaid and disability. And Katrina was one of them, so she he joined the campaign by ACT UP to get the CDC to change the definition of AIDS.
[ARCHIVAL AUDIO 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, um, 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 D.C. now. And Katrina is down in Atlanta, speaking to a bunch of bigwigs at the CDC. She’s there with Maxine Wolfe, the ACT UP activist, the one who brought her tape recorder. Maxine remembers the meeting.
MAXINE WOLFE TODAY: 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. 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.
DR. ANTHONY FAUCI: I can remember, in fact I'm having a visual film going on in my mind right now, of when I 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: That’s Dr. Anthony Fauci. He was the director of the National Institute of Allergy and Infectious Disease, and that meant 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.
LIZZY RATNER: Do you happen to remember just one woman who was a part of that — Maxine Wolfe?
DR. ANTHONY FAUCI: Oh, yeah. She was a tigress. I mean, she was very proactive, maybe even a little aggressive. But you know, when, when people are not listening to you, retrospectively, you wind up respecting them for being that way.
LIZZY RATNER: Yeah, I mean, we've talked to a number of women who said that, you know, in the late ’80s 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.
DR. ANTHONY FAUCI: I think, yeah, I think you, 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? You know, what was missing in the translation?
DR. ANTHONY FAUCI: You know, 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.
LIZZY RATNER: 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 ANASTOS: There was a conference, finally, because of all this pushing, there was a conference at NIH, about HIV and women.
LIZZY RATNER: Dr. Kathy Anastos was there. She’s the doctor whose teacher brought pin-ups to her anatomy class. It’s almost 10 years into the epidemic and this is the first national conference that focuses on women.
DR. KATHY ANASTOS: A lot of people invited who had been pushing to have more studies of HIV and women, have any study of HIV and women actually.
LIZZY RATNER: Activists, doctors, researchers, they were all there and they were fired up. They were not gonna leave without getting something.
DR. KATHY ANASTOS: 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.
LIZZY RATNER: 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.
[ARCHIVAL AUDIO ACT UP PROTEST]: Y'all ready? Ready, ready. 1, 2, 3. Help me understand what went wrong. I've been living in this country far too long. I need power. I need power …
[ARCHIVAL AUDIO KATRINA HASLIP]: I'm here ’cause I'm an ex-prisoner and I'm also HIV infected. And I learned that status while being confined …
LIZZY RATNER: Katrina is at an ACT UP protest outside the Department of Corrections in Albany, New York. She’s wearing this fake prisoner costume and she’s wearing this black leather hat, tilted to the side, a nose stud, gold hoop earrings.
[ARCHIVAL AUDIO KATRINA HASLIP]: …and because I want adequate healthcare for prisoners that I 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 who, 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 then 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, like, 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, um, ’cause some part of her just couldn't ever be okay with this.
TERRY MCGOVERN: Katrina was not well for very long on the outside, like, 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 like 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 like 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, you know, she used to steal my wallet,. You know, 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 fewest T-cells. I remember having very serious conversations with her.
LIZZY RATNER: Katrina, from her hospital bed.
TERRY MCGOVERN: And, um, she felt strongly that we should take it. That, you know, 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. Um, and yes, there should be many more things in it, but, you know, 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 kind of saying, you know, this never would've happened without women standing up for themselves, without activists. This is not the way this should be. Right. And 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 2, 1992. She was 33 years old.
TERRY MCGOVERN: For Katrina to die and never get AIDS, given who she'd been, it just— 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, you know, walking into the office here and there was those pink messages. Like piles of messages of clients that had died. It kind of felt like everybody was dying and the plaintiffs in the lawsuit were dying, so we were winning, but who cares right?
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, like I teach at a school of public health, so I try to say, here's why science is not neutral. Right? Whenever I show that 45% increased slide, I never feel joy. I feel really angry and sad, you know? Most of these women are not around to, you know, be in the films. On the other hand, you know, as I have, I hope, been able to describe, I carry them, right, 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 González, she was still in prison when Katrina died — she was released a few years later. And she and a group of women stiched a panel for the AIDS Memorial Quilt in memory of Katrina.
AWILDA GONZALEZ: ’Cause, you know, the quilt was also part of our 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.
LIZZY RATNER: Yeah.
AWILDA GONZALEZ: 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 wanna be? Um, which is a challenge that all of us have as we re-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: Ay, Katrina, Katrina de mi vida. Page 10, okay. Let me see.
LIZZY RATNER: Katrina's old friends, Windy and Judy, they’re gonna read her words.
AWILDA GONZALEZ: We were the community that no one thought would help itself. Social outcasts, 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.
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 50s, 60s, even 70s. But, we have so much farther to go.
Among the women who test positive for HIV each year in this country, more than half of them, more than half, are Black. And almost 20% are Latina.
KAI WRIGHT: That racial disparity among women is actually a defining trait of the AIDS epidemic in America. No matter how you slice it, Black people have been shockingly overrepresented since the beginning — in who contracts the virus, in who develops AIDS, and who dies from it. Even if few people acknowledged these facts. And in the years following Katrina Haslip’s death, Black people would begin to account for the majority of all new infections and new AIDS diagnoses each year.
There are so many reasons for this disparity. But one of them, painfully, is the Black community’s reluctance to confront HIV and AIDS when it came for us.
PERNESSA SEELE: You know, “God hates homosexuals,” or “God hates you because you doing drugs” or “this a wrath of God” — or whatever negative, destructive messaging that they got, most times they got it from the pulpit, the most influential place in our community.
KAI WRIGHT: In our next episode, we ask, what broke down in Black America when HIV showed up?
KAI WRIGHT: Blindspot: The Plague in the Shadows is a co-production of The HISTORY® Channel and WNYC Studios, in collaboration with The Nation Magazine.
Our team includes: Emily Botein, Karen Frillmann, Ana Gonzalez, Sophie Hurwitz, Lizzy Ratner, Christian Reidy and myself, Kai Wright. Our advisors are: Amanda Aronczyk, Howard Gertler, Jenny Lawton, Marianne McCune, Yoruba Richen and Linda Villarosa. Music and sound design by Jared Paul. Additional music by Isaac Jones. Additional engineering by Mike Kutchman.
Our executive producers at The HISTORY® Channel are Jessie Katz, Eli Lehrer and Mike Stiller.
Thanks to Miriam Barnard, Lauren Cooperman, Andy Lanset and Kenya Young.
I’m Kai Wright — you can also find me hosting Notes from America live on public radio stations each Sunday. Or check us out wherever you get your podcasts.
And thanks for listening.
Transcripts are created on a rush deadline, often by contractors. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of New York Public Radio’s programming is the audio record.