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- [00:01]
Al Ledson
This episode is brought to you by Progressive Insurance. Do you ever think about switching insurance companies to see if you could save some cash? Progressive makes it easy to see if you could save when you bundle your home and auto policies. Try it@progressive.com Progressive Casualty Insurance Company and affiliates. Potential savings will vary. Not available in all states.
- [00:20]
Al Edson
From the center for Investigative Reporting and prx, this is reveal. I'm Al Edson. 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.
- [00:37]
Dr. Lawrence K. Altman
It's morning again in America. Today. More men and women will go to work than ever before in our country's history.
- [00:45]
Al Edson
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.
- [00:56]
Phil Wilson
This afternoon, 6,500 young men and women will be married.
- [01:00]
Al Edson
We can all prosper if we agree to look away, to look away from the hard stuff and instead to look ahead.
- [01:07]
Dr. Lawrence K. Altman
And with inflation at less than half.
- [01:09]
Phil Wilson
Of what it was just four years.
- [01:10]
Dr. Lawrence K. Altman
Ago, they can look forward with confidence to the future.
- [01:16]
Al Edson
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 has hung as a permanent cloud over intimacy, love and lust for generations. And to this day, when most people think about 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. In 2024, they created a series called the Plague in the Shadows. It was a collaboration between the History Channel and wnyc. It looked 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. Today we're bringing back a version of the story we aired on Reveal. Here's Kai.
- [02:22]
Larry Altman
The virus announced its presence to mainstream America in an article that appeared in the back pages of the New York Times.
- [02:29]
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.
- [02:36]
Larry Altman
There were a story published on July 3, 1981, written by the OG of Medical Journalism.
- [02:44]
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.
- [03:00]
Larry Altman
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 a way only a New York Times article can do.
- [03:30]
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. 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.
- [03:56]
Larry Altman
Now, Larry Altman is writing here as a kind of split personality, as a reporter, but also a doctor who practices and sees patients.
- [04:05]
Dr. Lawrence K. Altman
As a physician, I had time to do medicine, take time from the Times to do that.
- [04:12]
Larry Altman
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 in a publication called the Morbidity and Mortality Weekly Report, or the mmwr. That wonky name is appropriate. It's kind of 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 70s.
- [05:24]
Dr. Lawrence K. Altman
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.
- [05:50]
Larry Altman
At this stage, people weren't seeing beyond gay men what about yourself? What were you seeing at that time? Were you. I mean, the report you wrote was about the 41 men. Could you see more than that?
- [06:06]
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. So to me, I didn't see that it would be limited to the gay men population.
- [06:33]
Larry Altman
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. And, I mean, how do you think that would have been received amongst your editors?
- [07:02]
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? And if it's an oddity, I don't think the Times would have been interested. If you could show that it was part of a broader pattern, then they presumably would have been interested. But we didn't have the evidence, and 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.
- [07:42]
Larry Altman
And the facts were coming from the mmwr, which focused only on gay men. Do you. 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 was, you know, that you couldn't quite prove, but that you were like, something else is going on here too.
- [08:17]
Dr. Lawrence K. Altman
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 I, you know, using the word I and writing first person accounts. It was coming off the news and explaining what was going on.
- [08:53]
Larry Altman
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.
- [09:28]
Al Edson
People were looking where it was Easy for them to look.
- [09:32]
Larry Altman
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-80s, he's been begging people to see this epidemic in broader terms.
- [09:50]
Al Edson
You 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, well, where were you the last time you saw your keys? And the guy says, about a block down the road. And the guy says, well, why are you looking here? And he says, because the light's better. And so basically that's how we were developing narratives.
- [10:24]
Tony Fauci
Most people thought about this as well. It's just a gay disease, you know, so we don't need to worry about it. It's somebody else's problem.
- [10:33]
Larry Altman
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 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.
- [11:02]
Tony Fauci
I see where you're going.
- [11:04]
Larry Altman
And he argues, look, you gotta remember that this was an unprecedented epidemic.
- [11:10]
Tony Fauci
When you're 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 learn in 83, and.
- [11:30]
Larry Altman
Very different than what we understand now, 40 some odd years later.
- [11:34]
Tony Fauci
We experienced this as recently as, 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, 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?
- [12:24]
Larry Altman
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 wide 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.
- [13:16]
Phil Wilson
A mystery disease known as the gay.
- [13:18]
Katrina Haslip
Plague has become an epidemic unprecedented in the history of American medicine.
- [13:22]
Lizzy Ratner
It's mysterious, its deadly and its baffling medical science.
- [13:27]
Katrina Haslip
For Disease control in Atlanta, topping the list of likely victims are male homosexuals who have many partners.
- [13:33]
Larry Altman
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.
- [13:53]
Al Edson
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 the Plague and the Shadows.
- [14:09]
Phil Wilson
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.
- [14:23]
Al Edson
How women struggle to be seen as victims of the deadly disease. You're listening to Reveal.
- [14:35]
Lizzy Ratner
If you're listening to this show, you care about stories that investigate the truth and impact millions. I'm Danielle Elliott, and on Climbing the Walls, I'm digging into the rise of ADHD diagnoses. I'm exploring what happens now that the world is finally starting to catch up with what women have been saying for decades.
- [14:54]
Katrina Haslip
I don't know what happened, but the algorithm heard the conversation and figured out.
- [14:59]
Awilda Gonzalez
Like you're a black woman with adhd.
- [15:01]
Katrina Haslip
We still get misdiagnosed with depression or they see depression, but they don't see the ADHD component to it or the comorbidity.
- [15:09]
Lizzy Ratner
Join me as we explore why women have been left out of the ADHD conversation for so long. We're talking to mental health experts sharing real stories and uncovering the truths that you need to hear to listen to Climbing the Walls. Search for Climbing the Walls in your favorite podcast app. Right now. Refugees from Ukraine, Sudan, and beyond. Face impossible choices. Pack winter coats or pack more food. Carry extra clothes or carry more water. Take another blanket or take more diapers. These aren't abstract choices. They're decisions families are making. At this very moment, unhcr, the UN refugee agency, is there bringing shelter, protection and food to families whose lives were turned upside down. Your donation will reach a refugee family within 72 hours. Go to unrefugees.org donation to make your gift.
- [15:59]
Katrina Haslip
Hey, this is Misa from Reveal. How many episodes have you listened to? 5, 500? And how many times have you donated? It's free to listen to these shows, but great journalism is anything but free to produce. It takes millions of dollars a year to make reveal. And the truth is it would not be possible if listeners did not support it. So please donate today. Just text the word give give to 88857 reveal. That's 888-577-3832 or visit revealnews.org donate thank you.
- [16:54]
Al Edson
From the center for Investigative Reporting in PRX, this is revealed. Hi, I'm Al Ledson. Today we're bringing back an episode about the early days of AIDS and the fight to get policymakers to pay attention to communities that were hit hardest. It's from the podcast series called the Plague in the Shadows. By the late 1980s and early 90s, a surge of activism had begun to make progress on aids. Public awareness was growing and elected officials could not 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 Radner from the Nation magazine explains.
- [17:48]
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.
- [18:25]
Awilda Gonzalez
We were these supposedly criminals, you know, 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 hyped.
- [18:36]
Lizzy Ratner
One name kept coming up at the center of this story.
- [18:40]
Phil Wilson
Katrina.
- [18:41]
Katrina Haslip
Katrina. I kind of became obsessed with who is Katrina Haslip?
- [18:45]
Judith Clark
Katrina was an inspiration to all.
- [18:50]
Lizzy Ratner
Katrina Haslip. 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 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.
- [19:40]
Phil Wilson
Katrina was very fiery, and she had a real temper.
- [19:45]
Lizzy Ratner
Judith Clark. She met Katrina in solitary confinement, the prison's prison at Bedford Hills.
- [19:53]
Phil Wilson
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. Oh, my God, with this great big smile on her face.
- [20:08]
Lizzy Ratner
Judy was also in prison at Bedford, and the crime that got her there, it was a big deal.
- [20:17]
Katrina Haslip
Good evening. Echoes of the violent radical underground of the 1960s rolled over the New York.
- [20:22]
Lizzy Ratner
Suburb of Nanuet today in the botched ambush of an armored car that left one guard and two policemen dead. Among the four suspects, 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.
- [20:51]
Phil Wilson
Our cells were very bare, you know, cinder block walls and a solid door, and then a small window on the other side that had a lot of mesh on it.
- [21:05]
Lizzy Ratner
I mean, it sounds kind of terrifying. It was 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.
- [21:25]
Phil Wilson
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.
- [21:43]
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.
- [21:54]
Phil Wilson
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's incredibly intelligent. She was A practicing Muslim, but she had this fire, and it could get her in trouble.
- [22:16]
Lizzy Ratner
And that is what drew them together and got them to start organizing in prison.
- [22:21]
Dr. Lawrence K. Altman
Let's take a look at the issue of AIDS in prisons.
- [22:24]
Lizzy Ratner
This is Dr. Sheldon Landesman, and he's speaking at a forum in 1987.
- [22:29]
Dr. Lawrence K. Altman
A huge percentage of the persons in the prison system, and I can't get a good handle on the number, for 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 surroundings area are infected with the AIDS virus. Taking the most conservative estimates, AIDS was.
- [22:52]
Lizzy Ratner
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. In these numbers, they were probably an undercount. In Bedford, so many women had fallen sick and disappeared that rumors were running wild.
- [23:22]
Judith Clark
Nobody knew what the hell was going on.
- [23:25]
Lizzy Ratner
Meet Awilda Gonzalez.
- [23:27]
Judith Clark
Everybody calls me Wendy.
- [23:30]
Lizzy Ratner
Wendy 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.
- [23:41]
Judith Clark
Well, many women bully other women, harassed them, beat them, shame them, blame them, their own fear. Because at one point, we all looking at these women and saying, wait a minute, how many times did I share a needle? See? But how many times did you made love to somebody and they didn't tell you or they didn't know?
- [24:07]
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.
- [24:16]
Phil Wilson
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.
- [24:25]
Lizzy Ratner
Wendy worked as a hairdresser in the prison hair salon, and she was starting to get lots and lots of questions.
- [24:32]
Judith Clark
My scissors, the knife that I use to do certain, you know, styles in the hair. And women questioning me, what are you doing to disinfect this? And I say, you know what? I need to educate myself.
- [24:46]
Phil Wilson
Either people were going to turn against each other, as was happening, or people were going to be able to seek each other.
- [24:56]
Lizzy Ratner
The women started organizing to put together a meeting. You didn't have to be HIV positive to join.
- [25:02]
Phil Wilson
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.
- [25:15]
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.
- [25:31]
Awilda Gonzalez
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 else say that out loud. And the room went like silent. 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.
- [26:07]
Lizzy Ratner
Katrina had tested positive for HIV a few months before this meeting, but she was not ready to be public about it.
- [26:14]
Phil Wilson
She told me, she told a couple of other friends. Judy 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 waging 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.
- [26:53]
Lizzy Ratner
At a meeting one day, Katrina got up in front of everyone and she.
- [26:58]
Awilda Gonzalez
Told them, and people's mouths like dropped, you know, because like I said, 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? And so I said to them, close your mouth.
- [27:23]
Judith Clark
Katrina never complained about nothing. She would come with her little fragile self and her little notebook. Feisty, fair, soft spoken Katrina, little piece of chocolate. Her skin was so chocolate, like, you know, nice and soft. Very analytic. While we all going off, she was sitting down listening.
- [27:56]
Lizzy Ratner
Because Wendy was a hairdresser, she knew everybody. So she was also recruited to join the group.
- [28:01]
Judith Clark
We were so blessed to really establish something that help 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 maximum security. They don't care what happened. To us, we're just dogs.
- [28:27]
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.
- [28:40]
Judith Clark
Okay, so I bring up.
- [28:52]
Lizzy Ratner
She'S talking about safe sex.
- [28:59]
Judith Clark
I am the greatest sex educator ever, honey.
- [29:05]
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.
- [29:24]
Awilda Gonzalez
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.
- [29:37]
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.
- [29:49]
Katrina Haslip
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?
- [30:08]
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.
- [30:18]
Phil Wilson
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.
- [30:36]
Al Edson
Katrina would do almost anything to get those voices out there, including breaking her parole, killing, biomission.
- [30:44]
Phil Wilson
Change the definition.
- [30:47]
Al Edson
When we come back, more from the plague in the shadows. You're listening to Reveal.
- [31:03]
Al Ledson
This program is brought to you by Audible. Listen to the new Audible original. The big A Jack Bergen mystery. Starring Jon Hamm as the hard boiled private eye cracking his latest case of murder and mystery stories. Four years after he left the FBI, Jack Bergen is pulled back into the fray by an old flame who persuades him to investigate a homicide and clear the name of an immigrant accused of murder. Conspiracy abounds as a Mexican American community is pushed out in order to build Dodgers stadium. In this story inspired by the real life battle of Chavez Ravine. Co starring Ana de la Regera as an activist out for justice. Omar Epps is Jack's partner in solving crime. And Alia Shawkat as an intrepid reporter racing to break the story. Plus a Cameo from John Slattery as a shady executive. Created by Jon Mankiewicz and directed by Aaron Lipstadt. Listen to a gritty and winding tale that delivers both meaning and mayhem with a solid punch. Go to audible.com the Big Fix and listen now.
- [32:04]
Al Edson
This program is brought to you by iPass. I pass works around the world to protect reproductive freedom because everyone deserves the ability to make decisions about their body and their future. When reproductive health care is available, accessible and affordable, people and communities thrive. Right now, our fundamental rights are being threatened. For more than 50 years, I pass has resisted and persisted, and we need your support. Join our global movement. Donate today to double your impact and support reproductive freedom. A generous I Pass supporter has offered to match donations up to $50,000. From new support. Go to ipas.org resist visit www.ipas.org resist. From the center for Investigative Reporting and PRX, this is Reveal. I'm Al Edson. 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 the Plague in the Shadows explains how Katrina went about doing that.
- [33:27]
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. And there's someone else there. Terry McGovern of the HIV Law Project.
- [33:52]
Katrina Haslip
I had been to many Act up demonstrations, but they were never like, you know, predominantly women of color with HIV speaking, you know, so it was a different type of demonstration, for sure.
- [34:05]
Lizzy Ratner
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 health care. They can't afford it. 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.
- [34:37]
Awilda Gonzalez
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.
- [34:48]
Lizzy Ratner
I couldn't work.
- [34:49]
Awilda Gonzalez
I constantly have urinary tract infections, chronic fatigue, and I was denied. It's time they changed the definition and stop killing women, denying them of their disability.
- [34:58]
Lizzy Ratner
Thank you.
- [35:02]
Katrina Haslip
And then suddenly somebody said, katrina Haslip is getting off the bus.
- [35:06]
Lizzy Ratner
Teri And Katrina had never actually Met before in person.
- [35:10]
Katrina Haslip
And 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 gonna get in trouble with your parole. And she said, I don't give a. You know, of course I'm here.
- [35:35]
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. Change the definition. 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 yeast infections, one after.
- [36:27]
Katrina Haslip
The other, pelvic inflammatory disease, cervical cancer.
- [36:32]
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.
- [37:01]
Awilda Gonzalez
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.
- [37:21]
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 Wolf. Now, Maxine, she is not a doctor, and she's not a health professional. She is an activist.
- [37:36]
Phil Wilson
I had to give a whole list of the assumptions that were underlying the fact that women were not being treated.
- [37:45]
Lizzy Ratner
Did you feel like you accomplished stuff and you actually managed to move them in that meeting?
- [37:49]
Katrina Haslip
No, we didn't feel like we moved them.
- [37:50]
Phil Wilson
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.
- [38:17]
Tony Fauci
I can remember, in fact, I'm having a visual film going in on 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.
- [38:34]
Lizzy Ratner
That's 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 Wolf?
- [39:00]
Tony Fauci
Oh, yeah, she was a tigress. I mean, she was very proactive, maybe even a little aggressive. But, you know, when people are not listening to you retrospectively, you wind up respecting them for being that way.
- [39:15]
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, I think.
- [39:32]
Tony Fauci
Yeah, 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.
- [39:56]
Lizzy Ratner
Where do you think the bridge fell apart? You know, what was missing in the translation?
- [40:02]
Tony Fauci
You know, if I had a clear cut answer, Lizzie, I would tell you.
- [40:05]
Dr. Lawrence K. Altman
I don't know.
- [40:06]
Tony Fauci
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.
- [40:27]
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 in the medical establishment. It was stubborn. It wasn't moving. And then in December 1990, activists scored a breakthrough.
- [40:52]
Katrina Haslip
There was a conference. Finally, because of all this pushing, there was a conference at NIH about HIV in women.
- [40:59]
Lizzy Ratner
Dr. Kathy Anastas 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 a lot of people.
- [41:14]
Katrina Haslip
Invited who had been pushing to have more studies of HIV and women, have any study of HIV in women.
- [41:20]
Lizzy Ratner
Actually, activists, doctors, researchers, they were all there, and they were fired up. They were not going to leave without getting something.
- [41:29]
Katrina Haslip
During that meeting is when Tony Fauci decided that they needed a study of women.
- [41:40]
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. Y' all ready?
- [42:24]
Larry Altman
Ready.
- [42:24]
Katrina Haslip
Ready. Do this.
- [42:27]
Al Edson
Let's do this.
- [42:30]
Lizzy Ratner
Understand what went wrong.
- [42:31]
Al Edson
I've been living in this country far too long.
- [42:34]
Judith Clark
I need power.
- [42:35]
Awilda Gonzalez
Condoms, too.
- [42:36]
Al Edson
It's a gift of life.
- [42:38]
Larry Altman
I need power.
- [42:41]
Lizzy Ratner
Why are you here?
- [42:42]
Awilda Gonzalez
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 him.
- [42:49]
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 kind of to the side, a nose stud, gold hoop earrings.
- [43:03]
Awilda Gonzalez
And because I want adequate health care 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 due to hiv, because that's like double jeopardy, and it becomes a death sentence for those individuals. And if they pose a no threat to society, let them out and let them die in dignity. So that's why I'm here.
- [43:34]
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.
- [43:57]
Katrina Haslip
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 being victims. Were models of resistance.
- [44:25]
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.
- [44:35]
Katrina Haslip
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. Cause some part of her just couldn't ever be okay with this. 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 even.
- [45:06]
Lizzy Ratner
Katrina couldn't get an AIDS diagnosis, only hiv.
- [45:10]
Katrina Haslip
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.
- [45:31]
Lizzy Ratner
Katrina was in and out of the hospital.
- [45:33]
Katrina Haslip
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? Not. She did it a few times. So she was so lively, actually, and funny and so wanted to live.
- [46:03]
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.
- [46:16]
Katrina Haslip
And they were offering this compromise of bacterial pneumonia, tuberculosis, cervical cancer, and 200 or fewer T cells. I remember having very serious conversations with.
- [46:28]
Lizzy Ratner
Her, Katrina from her hospital bed.
- [46:31]
Katrina Haslip
And 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. And yes, there should be many more things in it, but, you know, there's no time for this, as I remember her saying.
- [46:54]
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.
- [47:03]
Katrina Haslip
Katrina 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 have happened without women standing up for themselves, themselves, without activists. This is not the way this should be. Right? And, you know, 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.
- [47:46]
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.
- [48:15]
Katrina Haslip
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.
- [48:28]
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.
- [48:38]
Katrina Haslip
I really have this recurrent memory of, you know, walking into the office here, and it 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. Who cares, right?
- [49:01]
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.
- [49:21]
Katrina Haslip
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? And I. 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 like. But nothing about this is okay.
- [50:07]
Lizzy Ratner
Did you have a memorial for her in the prison?
- [50:10]
Judith Clark
Yes, we did. And I think we also had the quilt for Katrina.
- [50:16]
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.
- [50:30]
Judith Clark
Because, you know, the quilt was also part of our therapy every time somebody passed away. So we would 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, yeah, that was part of our therapy. Katrina was a powerful, determined woman. She fought to the end, and that's what counts.
- [51:07]
Phil Wilson
She got the chance to be a movement leader, an eloquent, powerful, incredibly impactful movement.
- [51:16]
Lizzy Ratner
That's Judith Clark again. She was released from Bedford in 2019.
- [51:20]
Phil Wilson
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 reenter life outside of prison.
- [51:41]
Lizzy Ratner
Before she died, Katrina wrote the introduction to an oral history of AIDS 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.
- [51:54]
Judith Clark
Hi Katrina. Catrina de mi vida, page 10.
- [51:59]
Lizzy Ratner
Okay, let me see Katrina's old friends Wendy and Judy. They're going to read her words.
- [52:07]
Judith Clark
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.
- [52:22]
Phil Wilson
Some of us, 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 a AIDS.
- [52:40]
Judith Clark
To my PS In Bedford Hills Correctional Facility. You have truly made a difference.
- [52:47]
Phil Wilson
I can now go anywhere and stand openly alone without the silence.
- [52:54]
Judith Clark
Katrina Haslip, 1990.
- [53:08]
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.
- [53:36]
Al Edson
To hear other stories from the early days of the HIV and AIDS epidemic, like a hospital ward 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 the Plague in the Shadows from the History Channel and WNYC Studios. Our episode was produced by Michael I. Schiller and edited by Taki Telenides. The Blind Spot team includes Emily Bottin, Karen Frohman, Anna Gonzalez, Sophie Hurowitz, 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 Jesse Katz, Eli Lehrer and Mike Stiller. Victoria Baranetsky is our general counsel. Our production managers are Steven Rascone and Zulema Cobb. Additional score and sound design for this episode by Jay Breezy, Mr. Jim Briggs and Fernando My Man Yo Arruda. Our interim executive producers are Brett Myers and Taki Telenides. Our theme music is by Camarado Lightning. Support for reveals provided by the Riva and David Logan foundation, the John D. And Kathryn T. MacArthur foundation, the Jonathan Logan Family foundation, the Robert Wood Johnson foundation, the park foundation, the Schmidt Family foundation, and the Hellman Foundation. Support for Reveal is also provided by you, our listeners. We are a co production of the center for Investigative Reporting in prx. I'm Al Ledson and remember, there is always more to the story.
- [55:25]
Judith Clark
From prx.