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It's FAQ NYC offsite, where the New Yorkers podcast from the newsroom by and for New Yorkers.
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The city steps back to take different and deeper looks into some of the things that are always happening here in the only place in the world.
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I'm Harry Siegel, our executive producer, and in this episode, you'll be hearing from guest host Richard Kim, editor-in-chief of the city, and previously the executive editor of the nation, where you work with both its features editor, Kaira, who's now a journalist at WNYC, and host of season three of its Blind Spot Podcast, a season being called The Plague in the Shadows.
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That's a six-part deep dive, along with lead reporter and nation deputy editor Lizzie Ratner, into the early years of the HIV AIDS epidemic, focused on overlooked populations, including intravenous drug users, incarcerated people, and the pediatric patients and staff at Harlem Hospital.
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Blind spot, Richard was telling me, emerged in part from a story idea that began at the nation, and in some sense on Heart Island, New York's Pottersfield for unknown, unclaimed, or indigent people.
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Let's jump right in.
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Thank you, Harry, for uh giving me your podcast.
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I um promise not to break it.
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Um and thank you, Lizzie and Kai, for joining us.
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Um it is a really special moment to um be reunited with you here.
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Thank you, Richard, for having us on.
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Yeah, thank you, Richard.
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This feels like a reunion.
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It's really wonderful for the three of us to be together.
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All right, so before we get to the reunion part of this, I just wanted to maybe like, you know, ask you why you folks did this now, right?
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And just to sort of set a little bit of context.
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We are, you know, over 40 years into the AIDS epidemic.
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You know, deaths since 1996 or 7 have, however, radically declined in the in the United States thanks to new therapies that are available.
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Um, you know, transmission um here in the US has has dropped dramatically and continues to drop as PrEP.
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That's um pre-exposure prophylaxis, um, a pill you can take to help prevent the spread of AIDS.
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That's contributed to the drop of of transmission.
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And, you know, I think a lot of people would say, okay, so AIDS may not be over, but it's it's managed, at least here and in in other wealthy nations.
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What do you say to that?
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And and and what why, given that, like, should we go and look back at this at this history now?
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Well, there there is a very particular set of inquiry that started with Lizzie that was our provocation, and I'll let Lizzie talk about that.
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But the bigger picture of what you're asking about there, Richard, is I'd say a couple of things.
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One, all that progress is wonderful.
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There uh this is far from an epidemic that's over.
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So HIV is a is a roadmap of inequity in the United States.
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It has been since it showed up, and it is remains so today.
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And um, and if you look at what remains of the epidemic today, it is a perfect map of the inequity today.
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It's concentrated in the South amongst uh poor people of color, poor Black women and young black gay men and people who have access to the healthcare system.
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Yeah, HIV is in the background, and people who don't, it is not.
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And that that reality was true in 1981 and it's true in 2024.
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And so part of what we're doing is reminding us of that.
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You know, I mean, the the I I like to say, and maybe I'm overstating it, but science has done its job on HIV AIDS.
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Um, you know, there's not much left science to do.
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There's a pill.
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If everybody in the world who is HIV positive had access to that pill, there would never be another HIV infection and there would never be another HIV death.
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Um, but everybody in the world doesn't have access to that pill.
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Um and we can see the people who don't have access to it reflect a lot of things that people that those people don't have access to.
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So that's the that's the why of the big picture.
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Um, but also uh Lizzie just had a bunch of questions.
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Um so Lizzie, to those questions, I think we were in a different office many years ago.
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I mean, could it have been 10 years ago or or so?
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Or so I have a weirdly obsessive memory for dates, and I want to say it was late 2017 or maybe January 2018.
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Um something like that.
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So, you know, I guess that is pushing six years ago.
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All right.
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So so so a long time ago, I I remember you you you coming into my office and and talking about SCB1.
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Um what who is SCB1?
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Yeah, that's a I remember that moment well because it changed so much for me.
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Um, so SCB1 stands for special case baby one.
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And special case baby one is a child who is buried on Heart Island.
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Heart Island, as Harry mentioned in the opening, is New York City's Potter's Field.
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It's public cemetery where the unclaimed, the unidentified, sometimes the indigent are buried.
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And it turns out it's this giant cemetery off the coast of the Bronx.
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As many as a million people were buried there.
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And all the graves on the island are pretty much mass graves.
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But um in around 2009, I found out about this one grave that was alleged at the time to be the only grave where a single person was buried.
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We know that's not the case now, but at the time, that is what I had heard.
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And I had heard that this grave had this unusual marker that says SC-B1, which stands for special case baby one, and that that designation, in turn, stood for or sort of um was the marker letting people know that this was the grave of the first child to have died of AIDS in New York City.
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That was sort of the legend that had grown up around this child.
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Do you know what year that was?
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Oh yes, 1985.
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Sorry, 1985.
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And that is on the marker as well.
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And when I found out about this child, um, it blew my mind a little bit.
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For one thing, I had heard about Ryan White, the absolutely heroic child, um, teenager who in 1985 was diagnosed, or in 84 was diagnosed with HIV and then was kicked out of school, basically, not allowed to attend because of his status.
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And he fought it and he was valiant.
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Um, and he died in 1990.
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But that was pretty much the only child I think I'd heard of who had HIV.
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In my mind, it was a disease that had absolutely decimated communities of gay men.
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But, you know, the idea that it had killed other children or other people, that I didn't so much know.
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And so I was curious, wait, this child died and was buried on Hart Island.
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I grew up in New York City.
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I was alive in 1985.
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How come I didn't hear about this?
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Who is this kid?
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What was going on?
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And since I knew that Hart Island was a place that was often where people who had been cast to the margins of society were then sort of once again cast to the margins in burial, I thought, okay, the story of this child must be pretty heavy.
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And I'm guessing it's gonna tell us something bigger about the era in which this child died, something about the city, about inequality, um, something about this connection between this disease, HIV and AIDS, and uh the sort of inequity of the city at the time.
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And so that was the beginning of my search and quest.
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And Kai jumped along, and more than jumped along, he like invited me on board and encouraged this quest.
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And what's interesting is that while we have yet to find SCB1 and maybe never will, we found a story about New York City, about HIV and AIDS, that is so much vaster, so much richer, so much more troubling, and in ways, I hate to use the word inspiring, but it is filled with people who are so much more inspiring than I ever could have imagined.
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So, so let's let's talk about that sort of journey for you first, because I think both of you bring some real personal stakes to this as well.
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Lizzie, as a as a New Yorker and someone who grew up here and you know, as a child, you know, saw saw this happening around you.
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Kai as, as you say in the podcast, as a gay man who has been reporting on HIV AIDS for um a couple decades.
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Um now, um you know, Lizzie, when you when you put this together, like how does your memory of of what New York was like in the 80s and 90s inform and surprise?
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Like, what did you do, did you, did you discover new things in in doing this?
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And and Kai, from just your your perspective as a reporter, like what did you learn in in putting this together that you might have been surprised about or didn't know um, you know, sort of coming into this?
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Because I I will just also say for me as someone, and I should disclose here that you know my my partner Howard is an advisor on this podcast, not the reason why Harry uh spoke to you folks.
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Um and um, you know, I also have some experience, you know, reporting on HIV AIDS, and yet I I found in every episode many surprising nuggets of information and history and voices that I had not uh heard before.
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But I just wanted to hear from you folks like what was the most sort of surprising element of putting this together.
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You know, I I for me this has involved going back and having conversations with some people I've known for decades, uh, and having the kinds of conversations with them that I nonetheless have never had with them.
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Um, particularly some of the black gay men who are a generation older than me, who were the first responders to this epidemic.
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And um, and I've covered their work, I've done some activism with them in my life, um, I've been friends with them.
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Uh, and I've never really genuinely talked to them about the scars they carry and the relationships they had with one another and with one another who were alive and with those who are gone.
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Um, and just I was just reminded how present tense this is.
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I mean, getting back to why now also, like there are millions of people for whom this is very present tense, you know, um, where it is still something that is a part of their emotional and mental lives every day because they lived through this is not ancient history, you know, these are middle-aged people.
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Um, and um uh and they did these incredible heroic things uh that there's just so much to learn from, their ability to respond and how and why they did.
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Uh and so that has been a both challenging and really special and illuminating part of the process for me is these new kinds of conversations that I've been able to have.
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Wow.
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Uh, what about you, Lizzie?
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Yeah, I mean, I think, you know, part of the reason I really wanted to do this is that my childhood still remains pretty vivid for me.
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And growing up as a kid who was definitely conscious in the 80s, which was a really rough and painful time.
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I mean, it gets kind of glorified now as the gritty go-go era of New York, when things were real and authentic, and maybe that was true.
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Um, but there was a lot of obvious pain.
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And even as a child of absolute privilege growing up in this city, you couldn't be even a half-conscious person and not see that.
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Um, not see that there was this gaping inequality along, you know, racist lines.
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You know, this was the era when homelessness was becoming a real issue in the city.
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And there were vast tracts of the city which were rubble and where people were living in clearly inadequate housing.
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You could just walk down the street and there'd be no windows.
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And as a kid, you're kind of like, what's going on?
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I don't, I'm not living in this situation, but this doesn't feel right.
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And so I wasn't surprised by some of the stories I heard confirming the level of pain and inequality.
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But what I was surprised by was the way in which you can see that HIV and AIDS, that crisis emerged specifically in poor Black and Puerto Rican communities, very much as a result of the political and economic collapse of the late 60s and early 70s and into the 80s.
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And you can kind of see these conditions being created that would then enable this virus to take hold.
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Specifically, you know, I'm speaking in big generalities right now, but specifically if you look to Harlem, if you look to the South Bronx, if you look to the Lower East Side, Nice Village, Central Brooklyn, you know, you can practically like see the red lines glowing around the neighborhoods.
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And um, and these were the same communities that when the economy crashed in the late 60s and 70s, you know, they were working-class communities, city deindustrializes, jobs disappear, you know, a burgeoning heroin economy really takes hold.
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Heroin, it turns out, and injection drug use are the perfect vehicles through which to transmit AIDS, a you know, fluid-borne, blood-borne illness.
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Um, and then on top of that, you have the city just disinvesting, divesting from these neighborhoods, closing clinics, closing methadone clinics, closing hospitals.
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And so these neighborhoods are completely unprepared for what hits.
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And then in the 80s, all that you have coming in are really these private entities trying to patch together some kind of solution.
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So the degree to which you could see this connection between the kind of sickness of the body politic and the sicknesses that were then kind of literally inhabiting people's bodies, that stunned me.
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Um, and the second thing I guess I would say is when I conceived or when I thought about SCB1, I really thought about it as this tragic story.
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And I still do.
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I mean, there is tragedy there, no question.
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But I thought of it purely in terms of victim and a person who is, you know, in a community that was acted upon by the city.
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And that is again, that is true.
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People were victimized.
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But what surprised me was the degree to which you had individual people and sometimes communities and community groups stepping into the void created by the government, well, left by the government, and saying, no, no, no, we are not going to be left out.
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We are not going to be let to die.
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Okay, we are being neglected, but we are going to do whatever we can within our power to make sure that people live, to make sure they get treatment, to prevent people from dying alone.
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And that really is what actually is now, I think, the beating part of the podcast.
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And you see that in episode after episode.
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Um, whether it's in the first episode, this woman, Valerie Reyes Jimenez, who finds out she's HIV positive, she's from the Lower East Side, and she's like, no, no, no, I am not gonna be silenced here.
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I'm gonna come out, I'm gonna say I'm gonna HIV positive, say I'm an HIV positive woman, and I'm going to demand services for me and my community.
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Um can we um, you know, one of the other places of uh as you said, beautiful people, like pain in this city, but also like surprising care and tenderness, right?
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Which is Harlem Hospital, which is which is where you you take blind spot, I think, in episode two.
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And there's a voice in that episode that I had never heard of before.
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There are several voices actually in that episode I had never heard of before, one of which is Dr.
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Haggerty, um, who's a who's just a really amazing character.
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And the other is uh someone named Victor Reyes, who was a boarder, one might say at Harlem Hospital.
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What does that mean, um, Kai?
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Like who who who is a boarder and who is who is Dr.
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Hagerty?
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I mean, the the idea of border babies, b-a B-O-A-R-D-E-R, so boarding at the hospital is actually something that I had heard of, but I had not understood in the detail, uh, even after covering this epidemic for 20 some odd years that we discovered once we looked at Harlem Hospital.
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Um, this was a direct consequence of the drug war.
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There were infants who were born to mothers uh that the state decided had to be separated from their families.
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Um and there's enormous amounts of politics to discuss there.
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Um, but we know we have we have we have more of a conversation now than we have then about it, at least.
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This idea of saying, okay, we're gonna separate these infants from their mothers because they have taken drugs.
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And so in this case, these are infants who were born HIV positive, two mothers who had been HIV positive, and they lived and died their entire lives on the ward of Harlem Hospital, on the pediatric ward of Harlem Hospital.
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And it's such a perfect example of what Lizzie was talking about of this epidemic is a story of individuals and communities stepping in where institutions fail and where institutions are designed to fail.
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And so Harlem Hospital had been through years and years and years of divestment.
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Um, and it did not have the resources to respond to the AIDS epidemic.
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Um, and so the nurses on that ward, under the leadership of Dr.
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Haggerty, who was in charge of that ward, they literally just created a home for these infants, you know, and like, and for me, one of the things uh one of my learnings, and it's it's very useful for me at this time in our history, is like, what is what is radical interaction?
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Like what is a what is a what is a radical investment of my time?
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What is a radical way to engage politically?
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And it's easy to think about that for some at the level that is visible to us with uh the kind of stuff that Act Up did, which was crucial and important um for changing the narrative.
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But it's also these individual nurses who just said, you know what, I'm gonna, we're gonna turn this hospital into basically a palliative word for these infants that society has discarded.
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And we're gonna not, we're just not gonna let them be discarded, and we'll just make that our our contribution to history.
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And it's just such uh it's such an inspiring for me at this point in life, an inspiring way to think about how I might be able to live differently than I have lived.
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I I think there's a just a really um powerful moment in that episode where the nurses talk about uh actually burying right, hold holding a funeral for a four-year-old, I believe, who had who had lived and died his whole life in that ward, had had never had never been outside of Harlem Hospital in in his whole life.
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And um it just it it it was like a gut punch when like who paid for that funeral when that was when that was sort of re revealed.
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Can you I would I don't know if it was it you, Lizzie, that was doing that interview?
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Can you can you talk about like what yeah?
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Yeah, so basically, so it's interesting.
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Um, one of the doctors we interview is this wonderful man named Stephen Nicholas, and he actually found out early on that there were children from the hospital, probably in the early, early 80s, who sometimes would end up going to Heart Island because be being buried on Heart Island because there were no parents around.
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They were, they were dead or their kids had been taken from them.
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And so the child would become a ward of the state.
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And so then these nurses would organize, they would do two things.
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They would either raise money to bury the kids, or some nurses actually donated their own plots.
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And then they would hold a funeral at Bailey's funeral home across the street from the hospital.
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What's notable about that is really until probably 1987, a lot of funeral homes wouldn't bury people who died of AIDS.
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Um yeah, there was there was so much fear, so much stigma, um, that you couldn't, even in death, people wouldn't touch you.
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Um, and so they this place, Bailey's, became sort of the funeral home of choice for this hospital.
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And as Margaret Haggerty, Dr.
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Haggerty, says in our episode, you know, she realizes that when this child, James, dies just before he turns four, she says, you know, I realized that we were the child's family.
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And so we had to organize a funeral.
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And they did.
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And they the thing is they did that for so many children.
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And as time went on and um the hospital learned to sort of provide at least some treatment for people with HIV, not to cure the HIV or even stem it, but to at least sort of keep people alive through the infections.
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You did have more parents who were surviving.
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Um, and then the community continued to be a community, but one where parents were able to be more involved and they did remarkable things like um the parents and the kids would all go to camp together over the summer.
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Or uh when the children would come in for these immunoglobulin sort of antibody infusions, um, the parents would all bring meals.
00:21:10.319 --> 00:21:16.480
And all the parents brought so many meals that they created a cookbook of all these special meals that parents would bring.
00:21:16.640 --> 00:21:18.640
And you know, I don't want to totally glorify things.
00:21:18.720 --> 00:21:31.119
It was still fundamentally terrible what was happening, but nonetheless, within the space of horror and great need at a hospital which had been radically defunded and they didn't even have Robotusin because there were so few funds.
00:21:31.440 --> 00:21:32.400
It's the city hospital community.
00:21:32.720 --> 00:21:34.000
Harlem Hospital was a city hospital.
00:21:36.160 --> 00:21:44.160
And so you had community, you have people step up and they create family and community out of the chaos and emptiness.
00:21:44.319 --> 00:21:49.279
Um, and that was remarkable and kind of you know really inspiring to hear.
00:21:49.359 --> 00:21:54.640
And as Kai said, I now keep thinking okay, in this moment of so much need, you know, what do I do?
00:21:54.799 --> 00:21:55.440
What can I do?
00:21:55.519 --> 00:21:56.319
Because it's not okay.
00:21:56.480 --> 00:21:58.319
There are people who step up in these moments.
00:21:58.640 --> 00:21:59.680
Was it hard to find?
00:22:00.160 --> 00:22:00.319
Dr.
00:22:00.400 --> 00:22:04.160
Haggerty and and some of these other, you know, the nurses from that ward.
00:22:04.319 --> 00:22:08.880
I mean, like these were people who um I mean Dr.
00:22:09.039 --> 00:22:12.559
Haggerty's case was in her 80s, I believe, when you when you spoke to her.
00:22:12.960 --> 00:22:14.240
She she has since passed.
00:22:14.319 --> 00:22:20.160
And um, she was one of the first people that Lizzie and I went to talk to, actually, um, uh, out in her house in Queens.
00:22:20.480 --> 00:22:26.799
Um, and um, I mean, Lizzie's a fabulous reporter, so um, we were able to find a lot of people.
00:22:27.119 --> 00:22:39.680
Um, but um, I think what is most notable, um, and yeah, I don't know, you speak for yourself on this, Lizzie, but I think what was most notable was less finding them than when we would find them.
00:22:41.839 --> 00:22:48.240
I mean, really to a person, you it was like you poke them and it was just you had opened a floodgate.
00:22:48.480 --> 00:22:54.720
Um, and this is getting back to like where it's just so present tense for so many people still that lived this history.
00:22:55.039 --> 00:22:58.880
Um, they were like, oh, no one has asked me this.
00:22:59.119 --> 00:23:03.039
Um, one, and two, let me tell you everything in great detail.
00:23:03.200 --> 00:23:07.920
Um, because and it just it really felt like you were talking to people who were talking about things that happened yesterday.
00:23:08.640 --> 00:23:25.920
And I'd say, you know, pretty much to a person, everyone cried, which was actually kind of horrible, um, you know, to witness because at least for me, I went in as a reporter being fascinated and thinking there was something meaningful to explore.
00:23:26.000 --> 00:23:30.720
But as Kai has said so eloquently throughout this, this was real for people.
00:23:30.880 --> 00:23:32.720
It is real, it is raw.
00:23:32.799 --> 00:23:50.000
And I think because um we as a society haven't fully reckoned with this, so many people just moved on that there's this scab to use a cliche um that's just kind of formed over this part of people's lives.
00:23:50.400 --> 00:23:52.640
But but the wound is deep.
00:23:52.799 --> 00:23:56.240
The wound is still really deep, and people went through a lot of trauma.
00:23:56.559 --> 00:23:58.559
And unnamed and uncelebrated.
00:23:58.640 --> 00:23:59.599
You know, I mean, that's the thing.
00:23:59.680 --> 00:24:03.599
I mean, there's so much, there's a lot of this epidemic's history that has not been told.
00:24:03.759 --> 00:24:18.799
Um, but particularly the stories that we're telling here in the communities that we're talking to here, these are things that that just people never ask them to say, hey, you know, we think about there's a people I I've had a lot of conversations were uh about comparisons to COVID.
00:24:18.960 --> 00:24:26.160
Um, and one of the big things that is very, very different is there was no essential worker of the HIV epidemic.
00:24:26.319 --> 00:24:29.920
These people were not celebrated as heroes in real time.
00:24:30.079 --> 00:24:33.359
They were actually treated as pariahs and they did the work anyway.
00:24:33.599 --> 00:24:42.240
And and I think something else that comes across is that especially in that first wave in the first years of the early 80s, um, they were not trained for that.
00:24:42.480 --> 00:24:42.640
No.
00:24:42.960 --> 00:24:47.759
I mean, I think repeatedly the healthcare worker, I mean, later generations, you have them people who become HIV specialists.
00:24:47.839 --> 00:24:54.400
They, you know, they they enter that vocation um on purpose and go through med school or nursing school with that in mind.
00:24:55.039 --> 00:25:00.640
You know, I think there's a pediatrician in the podcast that says, like, I didn't come here to take care of dying children.
00:25:00.720 --> 00:25:03.039
Like, that is not a thing that I want to do.
00:25:03.119 --> 00:25:09.440
And yet there he was on the 17th floor of Carmel Hospital doing that for for years, right?
00:25:09.759 --> 00:25:12.880
Yeah, he stayed his whole life, 25, or you know, his whole professional life.
00:25:12.960 --> 00:25:16.960
And interestingly, returned during COVID as a volunteer worker.
00:25:17.039 --> 00:25:24.079
So you have we've we've talked to a number of doctors whose professional lives have been bookended by these two epidemics or pandemics.
00:25:24.720 --> 00:25:34.319
Let's talk about one of the doctors who whose life has also been bookended um by the by this and who I imagine was not a difficult person to track down at all, um, which is Dr.
00:25:34.480 --> 00:25:47.440
uh Tony Fauci, who many years before he became um, you know, one of our leading doctors about COVID and talking about COVID, had his start in public health working on HIV AIDS.
00:25:47.839 --> 00:25:49.839
Can you just briefly describe his role?
00:25:49.920 --> 00:25:56.319
And then I have a very specific question about like your interaction with him, which I found um compelling.
00:25:56.480 --> 00:25:58.079
Let me let me put it that way.
00:25:58.559 --> 00:26:02.559
Uh which so he's the head of the, he was, of course, the head of NIH.
00:26:02.640 --> 00:26:07.680
Um, he was one of the first scientists to respond to HIV as a consequence.
00:26:07.839 --> 00:26:09.599
He has been on the front line since the beginning.
00:26:09.680 --> 00:26:15.279
He's been debating what uh went right and wrong since the beginning as a consequence.
00:26:15.440 --> 00:26:23.599
Uh, I think Lizzie and I, and I think on the team in general, we actually have we don't have consensus on what we think about uh what Tony Fauci told us.
00:26:23.759 --> 00:26:24.400
Oh, all right.
00:26:24.480 --> 00:26:25.680
Well, let's let's get into that.
00:26:26.160 --> 00:26:28.480
Um Lizzie interviewed Tony Fauci.
00:26:28.640 --> 00:26:32.720
So you you know I'm curious to hear what Kai's gonna say too.
00:26:32.880 --> 00:26:33.359
So yeah.
00:26:33.519 --> 00:26:44.559
Well, so I you know, I feel like one of the premises of the podcast, I think you just you say this very explicitly in episode one is like we are going over this history to see what other decisions might have been made, right?
00:26:44.720 --> 00:26:47.839
Um, did did the epidemic have to look this way?
00:26:48.079 --> 00:26:58.240
Who where were some places where blind spots or um you know willful decisions made the epidemic look the way the way it does?
00:26:58.400 --> 00:27:04.079
And um, you do this sort of gentle, sort of tough exchange with with both Dr.
00:27:04.160 --> 00:27:23.119
Fauci and with with um Larry Altman, who was the chief uh medical science reporter at the New York Times at that point about you know word choices they made, um scientific choices they made that shaped the epidemic as a gay male, as a white gay male really disease.
00:27:23.519 --> 00:27:27.039
So, like were you, Lizzie, were you were you satisfied with their answers?
00:27:27.200 --> 00:27:32.319
How how did you find um their they they responded to the to that kind of line of questioning?
00:27:32.640 --> 00:27:33.839
Uh yeah, well it's funny.
00:27:34.000 --> 00:27:35.119
When I asked Dr.
00:27:35.279 --> 00:27:46.799
Fauci about uh the fact that, you know, there were women getting HIV from the very beginning, and we didn't hear much about that.
00:27:46.960 --> 00:27:52.640
There were black men and black women getting HIV um from the very beginning, drug users.
00:27:52.799 --> 00:27:56.480
He was like, Oh, I know where you're going with this line of questioning.
00:27:56.720 --> 00:28:00.000
He was like immediately jumped on me kindly.
00:28:00.079 --> 00:28:05.039
I mean, he was he was really fun to talk to in an interview, I have to say, and very generous with his time.
00:28:05.200 --> 00:28:08.400
But um, but he sort of tried to like cut me off at the past there.
00:28:08.559 --> 00:28:11.759
And, you know, he was sort of like, you know, I don't understand.
00:28:12.000 --> 00:28:14.480
I saw where this was, I wrote an article early on.
00:28:14.559 --> 00:28:22.799
And he did, in fact, write an article early on saying that this would be that HIV, which was then they didn't know about it, so AIDS would be transmitted broadly.
00:28:22.960 --> 00:28:30.400
And so he was like, I think it just there was a communications breakdown, you know, with your average doctor all over the country, and they just didn't really see this.
00:28:30.480 --> 00:28:33.279
And I'm as curious as you are as to what happened.
00:28:33.599 --> 00:28:37.200
He also said that kind of it things were moving really quickly.
00:28:37.279 --> 00:28:39.359
It took a while to figure out what was happening.
00:28:39.599 --> 00:28:41.039
He makes an analogy to COVID, also.
00:28:41.519 --> 00:28:44.880
Like COVID, things evolve very, very rapidly, right?
00:28:45.119 --> 00:28:45.519
Exactly.
00:28:45.680 --> 00:28:51.119
And obviously they evolved much more rapidly in COVID because we had almost 40 more years of expertise.
00:28:51.279 --> 00:28:52.720
Okay, and I totally grant that.
00:28:52.799 --> 00:28:57.920
And I have sympathy for kind of the fog of early medical war or whatever you want to call it.
00:28:58.240 --> 00:29:12.559
Nevertheless, um, I think if you looked at things like the um morbidity and mortality weekly report, which is sort of um, you know, kind of the in-flight newsletter or something of the CDC.
00:29:12.799 --> 00:29:21.440
Um, if you went out, you know, went to actual hospitals, talked to doctors, you could see where this was heading.
00:29:21.599 --> 00:29:31.279
Um, and you actually had by the late, mid-late 80s, you had women um going to the CDC and saying we're being left out.
00:29:31.440 --> 00:29:35.839
You had doctors saying women are getting sick and are being left out.
00:29:36.000 --> 00:29:51.839
Um, and you had the CDC kind of actively refusing to um to recognize the degree to which um people, in addition to gay men and often gay white men, were getting sick.
00:29:52.079 --> 00:29:58.400
Um, and so I do think there was just a longtime misogyny and willed blindness here.
00:29:58.480 --> 00:30:06.319
Um, and also I think the fact that many of the women who were getting sick um were, for instance, in this specific case, were low-income women of color.
00:30:06.640 --> 00:30:09.359
I think that just didn't matter too much.
00:30:09.599 --> 00:30:17.599
Um so I think there was a sort of willful blind spot um that we have to acknowledge.
00:30:17.839 --> 00:30:19.039
But I have sympathy.
00:30:19.680 --> 00:30:21.200
Do you see it that way also, Kai?
00:30:22.079 --> 00:30:24.720
I I mean, I yeah, so the short answer is yes.
00:30:24.799 --> 00:30:28.160
I think we're we're talking a matter of degree here in our disagreements.
00:30:28.319 --> 00:30:36.160
Uh uh, I I think I have more sympathy for the fog of not knowing what you don't know.
00:30:36.319 --> 00:30:44.559
Um certainly early on, I think it's inexcusable as long as it took to acknowledge that women were um getting AIDS and to change the definition.
00:30:44.640 --> 00:30:50.400
That's inexcusable as Chris uh very well charts uh in our episode on that subject.
00:30:50.720 --> 00:30:53.839
I don't think there's any there's anything to debate there at this point.
00:30:54.079 --> 00:31:08.559
But um but what but the this early the way in which the early narrative set in, then it was only this particular group, not just white gay men, white game in Los Angeles, San Francisco, and New York City, and primarily New York City, right?
00:31:08.720 --> 00:31:11.920
That that was a very specific group of human beings that were affected.
00:31:12.160 --> 00:31:30.079
And I think what I see in that for me is um the ways in which our institutions, both whether it was the CDC or mainstream journalism, were set up to create self-reinforcing narratives and self-reinforcing sets of facts.
00:31:30.240 --> 00:31:34.480
Um, and I think that you could have fed just about any set of facts.
00:31:34.559 --> 00:31:53.039
Um, in this case, we're talking about race and gender and class, but I think it would have been true if we were talking about like auto auto-reviews, um, the ways in which those institutions were set up to self-to reinforce the beliefs they already had and not prompt you to look beyond those beliefs.
00:31:53.200 --> 00:32:00.559
Um, I think that has certainly in journalism changed meaningfully over the course of my career.
00:32:00.720 --> 00:32:18.079
Um, and so you know, to take the Larry Altman example, you know, I asked him why didn't, you know, he was a doctor who was seeing the cases that we're talking about himself, um, but could not call them and was thinking in real time, this looks an awful lot like they're saying what those gay men have.
00:32:18.240 --> 00:32:26.799
But he couldn't make the step as a reporter of saying, well, wait a minute, I'm gonna ask questions about that, because that's just not what reporting was, in his idea.
00:32:27.039 --> 00:32:38.240
Um, and um, that is not a to me, I have sympathy, like that's not a critique of him uh as much as it is a critique of the way we understood these institutions and the way they were set up at the time.
00:32:38.559 --> 00:32:45.440
Well, I mean, in many, in many ways, sort of the history you tell is of people forcing themselves into the room, right, where decisions are made, right?
00:32:45.519 --> 00:32:52.400
And and you know, we should note that like even at that time in New York, there there were no out gay men in in politics, right?
00:32:52.480 --> 00:32:54.880
Yeah, much less at the New York Times, right?
00:32:55.039 --> 00:33:11.200
Um uh nevermind women, African Americans, like, you know, all of that was not represented in the um sort of elite rooms where this these decisions were made until your subjects force themselves into that conversation.
00:33:11.359 --> 00:33:26.960
I just I want to, you know, ask about one of those like crazy aha moments, right, in the podcast where you you talk about in one year, there is a 45% spike in the number of women formally diagnosed with with AIDS.
00:33:27.440 --> 00:33:34.880
Um and you know, someone might look at that stat and be like, whoa, a lot of women like contracted AIDS that year.
00:33:35.519 --> 00:33:36.720
That's not what happened.
00:33:36.960 --> 00:33:39.759
Um, what what actually happened there, Lizzie?
00:33:40.640 --> 00:33:46.160
Yeah, so it's a it's a really good question, and it's gonna take a minute to kind of unravel, so bear with me.
00:33:46.400 --> 00:33:56.799
But as I said, women were really unrecognized, underrecognized by the government and medical establishment as people who are part of the HIV and AIDS crisis.
00:33:57.039 --> 00:33:59.440
Um, and there are a bunch of reasons for that.
00:33:59.599 --> 00:34:04.640
But what this meant is that the literal definition of AIDS.
00:34:04.799 --> 00:34:16.400
So there's obviously there's HIV, which is the virus, um, and there's AIDS, which is sort of a syndrome that happens when the virus is really, really advanced and your immune system begins to collapse, you get really sick.
00:34:17.360 --> 00:34:53.920
So um basically, by the late 1980s, you had women who were being diagnosed with HIV, but AIDS itself, that that sort of moment when people got really sick, the definition of what AIDS was and the symptoms that caused or that that were AIDS, um, that was predicated entirely pretty much on symptoms that were being seen in gay men, um, in men, really, um, on in male bodies, um, and um and also in slightly more affluent people.
00:34:54.320 --> 00:35:02.159
Um, and so because women didn't fit the criteria for AIDS, they weren't actually getting diagnosed with AIDS.
00:35:02.320 --> 00:35:16.079
So they could have HIV, they could be incredibly sick with, say, a bunch of gynecological symptoms like pelvic inflammatory disease and terrible uh other things, and um, and yet not qualify for an AIDS diagnosis.
00:35:16.239 --> 00:35:17.760
And that had consequences.
00:35:18.000 --> 00:35:19.599
And that had serious consequences.
00:35:19.760 --> 00:35:26.000
It meant that you couldn't qualify for a bunch of government benefits like housing vouchers and unemployment.
00:35:26.159 --> 00:35:29.840
Um, it meant and and and housing and things like that.
00:35:29.920 --> 00:35:34.400
Um, and then that could put women, if they couldn't work, at risk of losing their children.
00:35:34.639 --> 00:35:43.679
So at the moment, these women are literally dying, and as sick as they could be, they had to worry about health benefits and keeping their children and getting a house and all sorts of things like that.
00:35:43.760 --> 00:35:45.039
So the consequences were huge.
00:35:45.199 --> 00:35:53.840
Also, a lot of women just like they didn't think they could get this illness because none of all these things they were experiencing, they weren't what they were being told was AIDS.
00:35:54.239 --> 00:36:17.440
Um and so there was this massive fight beginning in the late 80s through 1993, where a bunch of activists led by women and often led by women with HIV and AIDS, um, they demanded that the federal government change the definition of AIDS so that it included symptoms that were more expansive, symptoms that were being experienced by women, also that were being experienced by drug users.
00:36:17.599 --> 00:36:20.480
Um and they were victorious.
00:36:20.559 --> 00:36:22.159
Uh, victorious is probably the wrong word.
00:36:22.320 --> 00:36:32.960
I mean, it's hard to describe something so basic and essential as a victory, but they um they managed to convince the central the centers for disease control to change the definition of AIDS.
00:36:33.039 --> 00:36:47.840
They also managed to convince the Social Security Administration to update its definition of AIDS so that women that when they were getting, you know, as sick as they were going to get, when they were almost dying, could be counted as having AIDS and um and would get these benefits.
00:36:47.920 --> 00:36:51.440
And so what happened in 1993, the definition changes.
00:36:51.519 --> 00:37:04.960
So all these women who formerly definitely had AIDS, but just weren't meeting the definition for it, all of a sudden, boom, they get sort of uh wrapped up in the definition.
00:37:05.039 --> 00:37:06.559
They qualify for the definition.
00:37:06.639 --> 00:37:12.880
And so that's why the definition all of a sudden, sorry, that's why the number of cases just jump 40, 45%.
00:37:13.360 --> 00:37:23.039
So translate what that means is before that moment, 45, you know, all these women, that 45% had AIDS, but just weren't being counted as having AIDS.
00:37:24.320 --> 00:37:26.800
Um I have one more question for for both of you.
00:37:26.960 --> 00:37:32.239
So, you know, you're researching and reporting this, I imagine, during COVID, right?
00:37:32.480 --> 00:37:50.239
Um through that and and recording it, you know, in in the last few years, and um you know, and and and I, you know, I think as I was also experiencing that pandemic, um, you know, it it struck me that some of this history really informs that moment.
00:37:50.639 --> 00:38:01.360
And um and some of the things like we have learned as a as a city, as a society, as um activists have have have shaped our response.
00:38:01.519 --> 00:38:04.079
Did you find those residences too?
00:38:04.159 --> 00:38:08.079
And what what what sort of struck out um stuck out for you there?
00:38:08.800 --> 00:38:29.519
I have to say, I mean, the more I did it, the more I found not the resonances, but the differences, you know, um in that one, as I said before, the the the the COVID was a play, it was a time in which so there were so many um everybody felt like they had a stake in this.
00:38:29.599 --> 00:38:36.320
That was absolutely not true um throughout the 80s for both the people affected by HIV and the people responding to it.
00:38:36.480 --> 00:38:41.119
It was an isolating experience um in which he retreated as a pariah.
00:38:41.440 --> 00:38:50.320
Um no one was banging wind pots out the window on behalf of anybody with HIV at any point in this epidemic, actually, to this day.
00:38:50.559 --> 00:38:59.920
Um and uh when you talk to people who live through that time, that's the first thing they'll say to me about um the differences with COVID.
00:39:00.159 --> 00:39:09.519
Um and then the similarities, uh, unfortunately, are uh that there are lessons we appear to not have learned.
00:39:10.000 --> 00:39:16.000
Um you know, uh as Lissy said so eloquently, this is a so this was a social disease.
00:39:16.159 --> 00:39:18.480
HIV was and is a social disease.
00:39:18.719 --> 00:39:33.599
Uh there um and um all of the inequities that we see in HIV were repeated in COVID um uh and around race and gender, um and who got it and who died from it and who had access to care and who didn't.
00:39:33.679 --> 00:39:35.440
Um we just did that again.
00:39:35.599 --> 00:39:55.280
Um and I think we have seen something similar in the post-COVID years of um those of us who, when we started with the when the epidemic got manageable for most of us, and we could figure out how to like get the masks out when we needed to and stay home when we needed not to.
00:39:55.519 --> 00:39:59.039
Those who could not do that, the epidemic remained unmanageable.
00:39:59.119 --> 00:40:03.760
Um, if you had to go to work, uh the epidemic remained unmanageable.
00:40:03.920 --> 00:40:08.559
Um, if you had uh pre-existing conditions, um the epidemic remained.
00:40:08.719 --> 00:40:20.400
So there's just unfortunately, um, when I look at the comparisons between COVID and HIV, uh it is one of the hard, it's one of the darker parts of this story to me.
00:40:20.719 --> 00:40:21.840
Lizzie, what about you?
00:40:22.159 --> 00:40:36.559
Yeah, I think I would just add that as I was learning about HIV, I had this constant sense of frustration because I felt like the activists then were telling us what the problems were then and are now.
00:40:36.960 --> 00:40:43.280
And if we had listened, maybe we could have avoided some little margin of the pain of COVID.
00:40:43.519 --> 00:40:52.960
So, what I mean specifically is you had activists then, you had people then, people with AIDS who are saying, it is inequality that is exacerbating this.
00:40:53.039 --> 00:40:55.760
It is stigma that is exacerbating this.
00:40:55.920 --> 00:40:57.440
Um, it is racism.
00:40:57.679 --> 00:41:07.360
And in fact, into the uh the episode that just went live, which is beautiful, um, which is about really focuses on Harlem and the black community's response.
00:41:07.519 --> 00:41:16.719
Um, we hear from this poet Craig Harris, who storms a uh public health meeting, the stage at a public health meeting, or not storms, but he he sort of claims the stage health meeting.
00:41:16.880 --> 00:41:18.000
Yeah, okay, thank you.
00:41:18.159 --> 00:41:22.960
Um, and he basically says, you know, you all are missing the picture.
00:41:23.679 --> 00:41:30.159
Racism and heterosexism and classism are all affecting this illness.
00:41:30.239 --> 00:41:33.199
They are shaping it and they are leaving people out.
00:41:33.440 --> 00:41:34.559
How dare you?
00:41:34.719 --> 00:41:37.280
And that was 40 years ago almost.
00:41:37.519 --> 00:41:50.000
And I feel like if we had paid more attention, we, whoever we are, you know, uh, we as a community society had paid more attention to the lessons of HIV, to the lessons that people were shouting at us.
00:41:50.880 --> 00:42:01.280
Maybe we would have been a little bit more prepared for um how COVID would strike with so much inequity.
00:42:01.519 --> 00:42:28.880
Um, and so I think for me, this period um of HIV and AIDS that we focus on is filled with lessons like that, um, that just keep echoing through the decades and that I am consistently um both horrified by and in awe of the fact that people understood with a sharpness that is mind-blowing what the solutions needed to be, um, how what we needed to see, what we needed to do.
00:42:28.960 --> 00:42:31.280
And so it's a touchstone for me.
00:42:31.360 --> 00:42:36.159
You know, I can look back at that moment and say, all right, here's how I should behave in the present.
00:42:36.719 --> 00:42:41.199
The podcast is called Blind Spot, The Plague in the Shadows.
00:42:41.440 --> 00:42:46.960
Uh, episode four um is called uh Respectability and the Politics of AIDS.
00:42:47.119 --> 00:42:47.760
Did I get that right?
00:42:47.840 --> 00:42:51.199
Or or Respectability Politics and the AIDS epidemic.
00:42:51.519 --> 00:42:52.719
And the AIDS epidemic.
00:42:52.880 --> 00:43:11.840
Um, I I I encourage all FAQ listeners uh to uh listen to FAQ again, but also to uh to to tune in to this this wonderful, wonderful podcast that um two people that I am very honored to call friends, um Lizzie Ratner and Kai Wright um have brought into this world.
00:43:12.400 --> 00:43:13.440
Thank you, Richard.
00:43:14.079 --> 00:43:15.360
Thank you so much, Richard.
00:43:15.519 --> 00:43:16.639
It's so great talking to you.
00:43:17.039 --> 00:43:17.760
Total pleasure.
00:43:17.840 --> 00:43:18.559
Thank you.
00:43:18.880 --> 00:43:30.159
F A Q FAQ NYC is headquartered of the city, a nonprofit, nonpartisan newsroom dedicated to hard-hitting journalism that serves the people of New York.
00:43:30.400 --> 00:43:34.480
You can find it all freely available to everyone at the city.nyc.
00:43:34.639 --> 00:43:39.039
And chip in to support that work if you'd like at thecity.nyc slash give.
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FAQNYC is an affiliate of the Colin Powell School at QA City College, where our co-host, Dr.
00:44:13.840 --> 00:44:18.400
Christina Greer, is one of the Manahan Public Scholars inaugural fellows.
00:44:18.480 --> 00:44:31.440
And we're an affiliate of the Flaming Hydra newsletter, a collection of 60 writers and artists, including me, Harry Siegel, delivering a cooperatively owned new newsletter to your inbox that you actually want to open.
00:44:31.679 --> 00:44:34.880
See more and subscribe at Flaminghydra.com.
00:44:35.119 --> 00:44:38.480
Our host this episode is Richard Kim, editor-in-chief of the city.
00:44:38.639 --> 00:44:42.639
I'm our executive producer, Harry Siegel, and our engineer is Adam Kamara.
00:44:43.039 --> 00:44:52.880
A special thank you to our guests from The Plague in the Shadows, the new season of the Blind Spot Podcast, Kai Wright of WNYC, and Lizzie Ratner of the Nation.
00:44:52.960 --> 00:44:55.760
And thank you, listener, for joining us and making it this far.
00:44:56.000 --> 00:44:59.199
Be kind, be cool, and we'll be back soon with more.
00:45:02.880 --> 00:45:05.679
Hey, thank you both for a terrific conversation.
00:45:05.760 --> 00:45:09.760
That was fascinating to uh be a flying the wall for.
00:45:10.079 --> 00:45:12.480
I'm excited to listen to the podcast.
00:45:12.719 --> 00:45:13.039
Thank you.
00:45:13.280 --> 00:45:15.920
I'm guilty not having started yet.
00:45:16.159 --> 00:45:18.639
Kai, it's a lot of podcasts, Aaron.
00:45:19.280 --> 00:45:21.440
Oh Lord, and I I don't listen to any of them.
00:45:21.679 --> 00:45:22.400
Don't tell.
00:45:23.199 --> 00:45:39.920
But I did want to ask you, Kai, what you thought of Fauci in this conversation, and as you're thinking about the connections between then and and now or more recently and these these two social epidemics.
00:45:40.400 --> 00:45:41.760
What do I think of Fauci?
00:45:42.559 --> 00:45:54.000
Um you're reacting, Kai, like every AIDS activist I know from Act Up.
00:45:54.400 --> 00:46:02.320
Like Peter, like all of them have that same reaction, which is like they were on the other side of the barricade from him for so long.
00:46:02.559 --> 00:46:10.000
And then there's this sort of weird respect and understanding and also tension and antagonism that kind of remains.
00:46:10.239 --> 00:46:34.320
Well, because this isn't because this is a man who has been willing to listen, like that's the thing is like Tony Fauci has from the beginning of age through COVID been somebody who has been at the center of power for public health and has been willing to say when I am wrong and I need to change and to change.
00:46:34.480 --> 00:46:48.960
Um and so I think he's earned a lot of people's respect as a consequence of that ability to change at the same time as a consequence of having been at the center of power for so long, he has been on the wrong side of a lot of decisions too.
00:46:49.119 --> 00:46:52.559
Um and uh and I think both things are true.
00:46:52.639 --> 00:47:02.719
And I think it's one of those things with this epidemic, with our politics, with life in general, we struggle with the word and um, and both and constructions.
00:47:02.800 --> 00:47:07.599
And I think with Tony Fauci, you really have to embrace the word and.
00:47:08.000 --> 00:47:18.960
You can't do 40 years of uh of public health from the top of the federal government and not have some good, some bad, and some ugly involved.
00:47:19.679 --> 00:47:23.039
And just one more thing I wanted to ask.
00:47:23.519 --> 00:47:29.360
There was that Times piece outing Ed Koch, sort of, after his death.
00:47:29.840 --> 00:47:38.719
Or outing an Ed Koch is complicated, but he never spoke of himself as a gay man publicly.
00:47:40.559 --> 00:47:52.800
And uh with these communities that are doing, that we're doing, and that often continue to, what the government is not, and we're not putting aside common resources for.
00:47:54.159 --> 00:48:14.800
I'm just wondering, and we never get to run these things back, if things could have played out differently if we had a New York like the one uh we have now, where you know, and Koch would have been the highest profile okay politician, not just in New York City, but in America, if he had come out.
00:48:15.280 --> 00:48:17.360
And that's not all that long ago.
00:48:18.079 --> 00:48:31.920
So uh I I think about that, and and if the public recognition could have been different, if the the conversation doctors had and the public had could have been different, if we could have bridged that gap sooner.
00:48:33.360 --> 00:48:56.000
It is certainly the case that as Richard said, the history of this epidemic is people who standing up and saying, actually, here I am, and you have to see me, you have to deal with me, you have to respond to me, and in doing so, changing their own relationship to um the facts and what the epidemic needs to be.
00:48:56.400 --> 00:49:08.960
And um had Ed Koch been able to own his relationship to the gay community at that time, would he have made different choices sooner?
00:49:09.119 --> 00:49:17.199
Um, would he have been uh a global leader in uh changing the conversation and the policy?
00:49:18.159 --> 00:49:20.239
Uh, we'll never know, you know.
00:49:20.400 --> 00:49:21.760
Uh we'll never know.
00:49:22.079 --> 00:49:42.159
But um certainly it's the case that uh many who did come out who weren't many, there were many gay men who were not out at the start of this epidemic, and the epidemic prompted them to change their relationship to their sexuality, and as a consequence, they changed history.
00:49:42.320 --> 00:49:44.639
So maybe Ed Koch would have been one of them.
00:49:45.039 --> 00:50:04.159
You know, um Randy Schultz, the the the journalist and and early AIDS historian makes a uh a really fascinating point in in his book and The Band Plan on, which is that Koch wasn't just like in the closet, he actually was very actively throughout his political career trying to distance himself from the gay community.
00:50:04.320 --> 00:50:10.639
And that included to like not fund gay organizations during the epidemic.
00:50:10.800 --> 00:50:21.199
And and Schultz points to San Francisco, where which Diane Feinstein was the was the mayor of at the time, straight women, who also was like sort of a center liberal person.
00:50:21.360 --> 00:50:28.079
And that city, which was one-tenth the size of New York City, had a budget for AIDS 10 times larger than than New York.
00:50:28.559 --> 00:50:38.400
Um so you know, there are choices um people made and that were were were shaped by you know the the the other decisions they had they had made prior to that.
00:50:40.400 --> 00:50:42.320
Um I have to run, guys.
00:50:42.639 --> 00:50:43.360
This is amazing.
00:50:43.440 --> 00:50:44.239
Thank you, Richard.
00:50:44.639 --> 00:50:46.320
Can we get together in real life?
00:50:46.559 --> 00:50:47.440
Yes, please.
00:00:08.800 --> 00:00:14.240
It's FAQ NYC offsite, where the New Yorkers podcast from the newsroom by and for New Yorkers.
00:00:14.320 --> 00:00:21.679
The city steps back to take different and deeper looks into some of the things that are always happening here in the only place in the world.
00:00:21.839 --> 00:00:43.359
I'm Harry Siegel, our executive producer, and in this episode, you'll be hearing from guest host Richard Kim, editor-in-chief of the city, and previously the executive editor of the nation, where you work with both its features editor, Kaira, who's now a journalist at WNYC, and host of season three of its Blind Spot Podcast, a season being called The Plague in the Shadows.
00:00:44.240 --> 00:01:02.960
That's a six-part deep dive, along with lead reporter and nation deputy editor Lizzie Ratner, into the early years of the HIV AIDS epidemic, focused on overlooked populations, including intravenous drug users, incarcerated people, and the pediatric patients and staff at Harlem Hospital.
00:01:03.600 --> 00:01:14.480
Blind spot, Richard was telling me, emerged in part from a story idea that began at the nation, and in some sense on Heart Island, New York's Pottersfield for unknown, unclaimed, or indigent people.
00:01:14.719 --> 00:01:15.840
Let's jump right in.
00:01:16.319 --> 00:01:19.920
Thank you, Harry, for uh giving me your podcast.
00:01:20.079 --> 00:01:22.560
I um promise not to break it.
00:01:22.719 --> 00:01:26.959
Um and thank you, Lizzie and Kai, for joining us.
00:01:27.120 --> 00:01:32.719
Um it is a really special moment to um be reunited with you here.
00:01:33.120 --> 00:01:35.519
Thank you, Richard, for having us on.
00:01:35.920 --> 00:01:37.040
Yeah, thank you, Richard.
00:01:37.120 --> 00:01:38.560
This feels like a reunion.
00:01:38.799 --> 00:01:41.599
It's really wonderful for the three of us to be together.
00:01:42.000 --> 00:01:49.439
All right, so before we get to the reunion part of this, I just wanted to maybe like, you know, ask you why you folks did this now, right?
00:01:49.519 --> 00:01:51.840
And just to sort of set a little bit of context.
00:01:52.000 --> 00:01:55.840
We are, you know, over 40 years into the AIDS epidemic.
00:01:56.079 --> 00:02:05.040
You know, deaths since 1996 or 7 have, however, radically declined in the in the United States thanks to new therapies that are available.
00:02:05.200 --> 00:02:11.759
Um, you know, transmission um here in the US has has dropped dramatically and continues to drop as PrEP.
00:02:12.000 --> 00:02:17.120
That's um pre-exposure prophylaxis, um, a pill you can take to help prevent the spread of AIDS.
00:02:17.360 --> 00:02:19.680
That's contributed to the drop of of transmission.
00:02:19.759 --> 00:02:28.479
And, you know, I think a lot of people would say, okay, so AIDS may not be over, but it's it's managed, at least here and in in other wealthy nations.
00:02:28.960 --> 00:02:30.159
What do you say to that?
00:02:30.319 --> 00:02:35.759
And and and what why, given that, like, should we go and look back at this at this history now?
00:02:36.560 --> 00:02:46.400
Well, there there is a very particular set of inquiry that started with Lizzie that was our provocation, and I'll let Lizzie talk about that.
00:02:46.639 --> 00:02:52.240
But the bigger picture of what you're asking about there, Richard, is I'd say a couple of things.
00:02:52.479 --> 00:02:55.039
One, all that progress is wonderful.
00:02:55.280 --> 00:02:59.919
There uh this is far from an epidemic that's over.
00:03:00.159 --> 00:03:03.680
So HIV is a is a roadmap of inequity in the United States.
00:03:03.759 --> 00:03:07.439
It has been since it showed up, and it is remains so today.
00:03:07.680 --> 00:03:14.400
And um, and if you look at what remains of the epidemic today, it is a perfect map of the inequity today.
00:03:14.479 --> 00:03:25.840
It's concentrated in the South amongst uh poor people of color, poor Black women and young black gay men and people who have access to the healthcare system.
00:03:26.000 --> 00:03:29.439
Yeah, HIV is in the background, and people who don't, it is not.
00:03:29.759 --> 00:03:34.400
And that that reality was true in 1981 and it's true in 2024.
00:03:34.479 --> 00:03:38.639
And so part of what we're doing is reminding us of that.
00:03:38.800 --> 00:03:45.919
You know, I mean, the the I I like to say, and maybe I'm overstating it, but science has done its job on HIV AIDS.
00:03:46.159 --> 00:03:48.800
Um, you know, there's not much left science to do.
00:03:48.960 --> 00:03:49.759
There's a pill.
00:03:49.919 --> 00:03:57.680
If everybody in the world who is HIV positive had access to that pill, there would never be another HIV infection and there would never be another HIV death.
00:03:57.840 --> 00:04:01.199
Um, but everybody in the world doesn't have access to that pill.
00:04:01.360 --> 00:04:08.159
Um and we can see the people who don't have access to it reflect a lot of things that people that those people don't have access to.
00:04:08.400 --> 00:04:10.879
So that's the that's the why of the big picture.
00:04:10.960 --> 00:04:14.240
Um, but also uh Lizzie just had a bunch of questions.
00:04:14.479 --> 00:04:20.079
Um so Lizzie, to those questions, I think we were in a different office many years ago.
00:04:20.240 --> 00:04:23.120
I mean, could it have been 10 years ago or or so?
00:04:23.199 --> 00:04:34.639
Or so I have a weirdly obsessive memory for dates, and I want to say it was late 2017 or maybe January 2018.
00:04:35.040 --> 00:04:36.560
Um something like that.
00:04:36.720 --> 00:04:39.279
So, you know, I guess that is pushing six years ago.
00:04:39.519 --> 00:04:39.759
All right.
00:04:39.839 --> 00:04:46.639
So so so a long time ago, I I remember you you you coming into my office and and talking about SCB1.
00:04:47.120 --> 00:04:52.079
Um what who is SCB1?
00:04:52.800 --> 00:04:57.360
Yeah, that's a I remember that moment well because it changed so much for me.
00:04:57.519 --> 00:05:02.639
Um, so SCB1 stands for special case baby one.
00:05:03.439 --> 00:05:09.439
And special case baby one is a child who is buried on Heart Island.
00:05:09.600 --> 00:05:14.240
Heart Island, as Harry mentioned in the opening, is New York City's Potter's Field.
00:05:14.319 --> 00:05:21.600
It's public cemetery where the unclaimed, the unidentified, sometimes the indigent are buried.
00:05:21.839 --> 00:05:26.639
And it turns out it's this giant cemetery off the coast of the Bronx.
00:05:26.720 --> 00:05:29.040
As many as a million people were buried there.
00:05:29.279 --> 00:05:33.839
And all the graves on the island are pretty much mass graves.
00:05:34.240 --> 00:05:45.040
But um in around 2009, I found out about this one grave that was alleged at the time to be the only grave where a single person was buried.
00:05:45.199 --> 00:05:49.120
We know that's not the case now, but at the time, that is what I had heard.
00:05:49.519 --> 00:06:11.040
And I had heard that this grave had this unusual marker that says SC-B1, which stands for special case baby one, and that that designation, in turn, stood for or sort of um was the marker letting people know that this was the grave of the first child to have died of AIDS in New York City.
00:06:11.360 --> 00:06:14.720
That was sort of the legend that had grown up around this child.
00:06:14.959 --> 00:06:16.000
Do you know what year that was?
00:06:16.560 --> 00:06:18.000
Oh yes, 1985.
00:06:18.160 --> 00:06:19.839
Sorry, 1985.
00:06:20.399 --> 00:06:22.240
And that is on the marker as well.
00:06:22.560 --> 00:06:26.959
And when I found out about this child, um, it blew my mind a little bit.
00:06:27.120 --> 00:06:42.560
For one thing, I had heard about Ryan White, the absolutely heroic child, um, teenager who in 1985 was diagnosed, or in 84 was diagnosed with HIV and then was kicked out of school, basically, not allowed to attend because of his status.
00:06:42.639 --> 00:06:44.800
And he fought it and he was valiant.
00:06:44.879 --> 00:06:46.560
Um, and he died in 1990.
00:06:46.639 --> 00:06:50.879
But that was pretty much the only child I think I'd heard of who had HIV.
00:06:50.959 --> 00:06:56.319
In my mind, it was a disease that had absolutely decimated communities of gay men.
00:06:56.480 --> 00:07:01.920
But, you know, the idea that it had killed other children or other people, that I didn't so much know.
00:07:02.079 --> 00:07:07.439
And so I was curious, wait, this child died and was buried on Hart Island.
00:07:07.519 --> 00:07:08.959
I grew up in New York City.
00:07:09.199 --> 00:07:10.720
I was alive in 1985.
00:07:10.800 --> 00:07:12.240
How come I didn't hear about this?
00:07:12.399 --> 00:07:13.360
Who is this kid?
00:07:13.519 --> 00:07:14.480
What was going on?
00:07:14.720 --> 00:07:28.079
And since I knew that Hart Island was a place that was often where people who had been cast to the margins of society were then sort of once again cast to the margins in burial, I thought, okay, the story of this child must be pretty heavy.
00:07:28.319 --> 00:07:45.759
And I'm guessing it's gonna tell us something bigger about the era in which this child died, something about the city, about inequality, um, something about this connection between this disease, HIV and AIDS, and uh the sort of inequity of the city at the time.
00:07:45.920 --> 00:07:49.600
And so that was the beginning of my search and quest.
00:07:49.680 --> 00:07:56.480
And Kai jumped along, and more than jumped along, he like invited me on board and encouraged this quest.
00:07:56.560 --> 00:08:18.879
And what's interesting is that while we have yet to find SCB1 and maybe never will, we found a story about New York City, about HIV and AIDS, that is so much vaster, so much richer, so much more troubling, and in ways, I hate to use the word inspiring, but it is filled with people who are so much more inspiring than I ever could have imagined.
00:08:19.279 --> 00:08:27.040
So, so let's let's talk about that sort of journey for you first, because I think both of you bring some real personal stakes to this as well.
00:08:27.199 --> 00:08:33.600
Lizzie, as a as a New Yorker and someone who grew up here and you know, as a child, you know, saw saw this happening around you.
00:08:33.759 --> 00:08:40.159
Kai as, as you say in the podcast, as a gay man who has been reporting on HIV AIDS for um a couple decades.
00:08:40.320 --> 00:08:52.159
Um now, um you know, Lizzie, when you when you put this together, like how does your memory of of what New York was like in the 80s and 90s inform and surprise?
00:08:52.320 --> 00:08:55.440
Like, what did you do, did you, did you discover new things in in doing this?
00:08:55.519 --> 00:09:05.360
And and Kai, from just your your perspective as a reporter, like what did you learn in in putting this together that you might have been surprised about or didn't know um, you know, sort of coming into this?
00:09:05.679 --> 00:09:15.200
Because I I will just also say for me as someone, and I should disclose here that you know my my partner Howard is an advisor on this podcast, not the reason why Harry uh spoke to you folks.
00:09:15.279 --> 00:09:30.000
Um and um, you know, I also have some experience, you know, reporting on HIV AIDS, and yet I I found in every episode many surprising nuggets of information and history and voices that I had not uh heard before.
00:09:30.159 --> 00:09:36.320
But I just wanted to hear from you folks like what was the most sort of surprising element of putting this together.
00:09:36.960 --> 00:09:51.519
You know, I I for me this has involved going back and having conversations with some people I've known for decades, uh, and having the kinds of conversations with them that I nonetheless have never had with them.
00:09:51.600 --> 00:10:01.519
Um, particularly some of the black gay men who are a generation older than me, who were the first responders to this epidemic.
00:10:01.759 --> 00:10:10.159
And um, and I've covered their work, I've done some activism with them in my life, um, I've been friends with them.
00:10:10.399 --> 00:10:25.600
Uh, and I've never really genuinely talked to them about the scars they carry and the relationships they had with one another and with one another who were alive and with those who are gone.
00:10:25.840 --> 00:10:32.080
Um, and just I was just reminded how present tense this is.
00:10:32.159 --> 00:10:50.720
I mean, getting back to why now also, like there are millions of people for whom this is very present tense, you know, um, where it is still something that is a part of their emotional and mental lives every day because they lived through this is not ancient history, you know, these are middle-aged people.
00:10:50.960 --> 00:11:01.200
Um, and um uh and they did these incredible heroic things uh that there's just so much to learn from, their ability to respond and how and why they did.
00:11:01.440 --> 00:11:11.600
Uh and so that has been a both challenging and really special and illuminating part of the process for me is these new kinds of conversations that I've been able to have.
00:11:11.840 --> 00:11:12.159
Wow.
00:11:12.240 --> 00:11:13.600
Uh, what about you, Lizzie?
00:11:14.320 --> 00:11:21.919
Yeah, I mean, I think, you know, part of the reason I really wanted to do this is that my childhood still remains pretty vivid for me.
00:11:22.080 --> 00:11:29.039
And growing up as a kid who was definitely conscious in the 80s, which was a really rough and painful time.
00:11:29.200 --> 00:11:36.399
I mean, it gets kind of glorified now as the gritty go-go era of New York, when things were real and authentic, and maybe that was true.
00:11:36.559 --> 00:11:38.480
Um, but there was a lot of obvious pain.
00:11:38.639 --> 00:11:46.639
And even as a child of absolute privilege growing up in this city, you couldn't be even a half-conscious person and not see that.
00:11:46.799 --> 00:11:52.480
Um, not see that there was this gaping inequality along, you know, racist lines.
00:11:52.639 --> 00:11:56.879
You know, this was the era when homelessness was becoming a real issue in the city.
00:11:56.960 --> 00:12:03.360
And there were vast tracts of the city which were rubble and where people were living in clearly inadequate housing.
00:12:03.440 --> 00:12:05.360
You could just walk down the street and there'd be no windows.
00:12:05.440 --> 00:12:07.519
And as a kid, you're kind of like, what's going on?
00:12:07.679 --> 00:12:11.360
I don't, I'm not living in this situation, but this doesn't feel right.
00:12:11.759 --> 00:12:20.159
And so I wasn't surprised by some of the stories I heard confirming the level of pain and inequality.
00:12:20.480 --> 00:12:41.120
But what I was surprised by was the way in which you can see that HIV and AIDS, that crisis emerged specifically in poor Black and Puerto Rican communities, very much as a result of the political and economic collapse of the late 60s and early 70s and into the 80s.
00:12:41.279 --> 00:12:48.879
And you can kind of see these conditions being created that would then enable this virus to take hold.
00:12:49.120 --> 00:13:02.879
Specifically, you know, I'm speaking in big generalities right now, but specifically if you look to Harlem, if you look to the South Bronx, if you look to the Lower East Side, Nice Village, Central Brooklyn, you know, you can practically like see the red lines glowing around the neighborhoods.
00:13:03.120 --> 00:13:18.159
And um, and these were the same communities that when the economy crashed in the late 60s and 70s, you know, they were working-class communities, city deindustrializes, jobs disappear, you know, a burgeoning heroin economy really takes hold.
00:13:18.399 --> 00:13:27.120
Heroin, it turns out, and injection drug use are the perfect vehicles through which to transmit AIDS, a you know, fluid-borne, blood-borne illness.
00:13:27.279 --> 00:13:36.399
Um, and then on top of that, you have the city just disinvesting, divesting from these neighborhoods, closing clinics, closing methadone clinics, closing hospitals.
00:13:36.559 --> 00:13:40.480
And so these neighborhoods are completely unprepared for what hits.
00:13:40.639 --> 00:13:47.200
And then in the 80s, all that you have coming in are really these private entities trying to patch together some kind of solution.
00:13:47.360 --> 00:13:58.639
So the degree to which you could see this connection between the kind of sickness of the body politic and the sicknesses that were then kind of literally inhabiting people's bodies, that stunned me.
00:13:58.960 --> 00:14:06.320
Um, and the second thing I guess I would say is when I conceived or when I thought about SCB1, I really thought about it as this tragic story.
00:14:06.399 --> 00:14:07.039
And I still do.
00:14:07.200 --> 00:14:10.159
I mean, there is tragedy there, no question.
00:14:10.399 --> 00:14:16.799
But I thought of it purely in terms of victim and a person who is, you know, in a community that was acted upon by the city.
00:14:16.879 --> 00:14:18.240
And that is again, that is true.
00:14:18.399 --> 00:14:19.840
People were victimized.
00:14:20.080 --> 00:14:34.559
But what surprised me was the degree to which you had individual people and sometimes communities and community groups stepping into the void created by the government, well, left by the government, and saying, no, no, no, we are not going to be left out.
00:14:34.720 --> 00:14:36.240
We are not going to be let to die.
00:14:36.320 --> 00:14:47.039
Okay, we are being neglected, but we are going to do whatever we can within our power to make sure that people live, to make sure they get treatment, to prevent people from dying alone.
00:14:47.120 --> 00:14:52.559
And that really is what actually is now, I think, the beating part of the podcast.
00:14:52.639 --> 00:14:55.759
And you see that in episode after episode.
00:14:55.919 --> 00:15:07.600
Um, whether it's in the first episode, this woman, Valerie Reyes Jimenez, who finds out she's HIV positive, she's from the Lower East Side, and she's like, no, no, no, I am not gonna be silenced here.
00:15:07.759 --> 00:15:14.639
I'm gonna come out, I'm gonna say I'm gonna HIV positive, say I'm an HIV positive woman, and I'm going to demand services for me and my community.
00:15:14.799 --> 00:15:24.159
Um can we um, you know, one of the other places of uh as you said, beautiful people, like pain in this city, but also like surprising care and tenderness, right?
00:15:24.559 --> 00:15:30.240
Which is Harlem Hospital, which is which is where you you take blind spot, I think, in episode two.
00:15:30.879 --> 00:15:34.159
And there's a voice in that episode that I had never heard of before.
00:15:34.320 --> 00:15:39.039
There are several voices actually in that episode I had never heard of before, one of which is Dr.
00:15:39.200 --> 00:15:43.360
Haggerty, um, who's a who's just a really amazing character.
00:15:43.600 --> 00:15:50.080
And the other is uh someone named Victor Reyes, who was a boarder, one might say at Harlem Hospital.
00:15:50.240 --> 00:15:52.480
What does that mean, um, Kai?
00:15:52.960 --> 00:15:56.159
Like who who who is a boarder and who is who is Dr.
00:15:56.240 --> 00:15:57.039
Hagerty?
00:15:57.360 --> 00:16:14.559
I mean, the the idea of border babies, b-a B-O-A-R-D-E-R, so boarding at the hospital is actually something that I had heard of, but I had not understood in the detail, uh, even after covering this epidemic for 20 some odd years that we discovered once we looked at Harlem Hospital.
00:16:14.639 --> 00:16:17.919
Um, this was a direct consequence of the drug war.
00:16:18.399 --> 00:16:29.360
There were infants who were born to mothers uh that the state decided had to be separated from their families.
00:16:29.440 --> 00:16:32.960
Um and there's enormous amounts of politics to discuss there.
00:16:33.120 --> 00:16:37.759
Um, but we know we have we have we have more of a conversation now than we have then about it, at least.
00:16:38.000 --> 00:16:43.919
This idea of saying, okay, we're gonna separate these infants from their mothers because they have taken drugs.
00:16:44.159 --> 00:16:57.919
And so in this case, these are infants who were born HIV positive, two mothers who had been HIV positive, and they lived and died their entire lives on the ward of Harlem Hospital, on the pediatric ward of Harlem Hospital.
00:16:58.000 --> 00:17:13.039
And it's such a perfect example of what Lizzie was talking about of this epidemic is a story of individuals and communities stepping in where institutions fail and where institutions are designed to fail.
00:17:13.200 --> 00:17:17.599
And so Harlem Hospital had been through years and years and years of divestment.
00:17:17.680 --> 00:17:21.839
Um, and it did not have the resources to respond to the AIDS epidemic.
00:17:21.920 --> 00:17:25.599
Um, and so the nurses on that ward, under the leadership of Dr.
00:17:25.680 --> 00:17:42.160
Haggerty, who was in charge of that ward, they literally just created a home for these infants, you know, and like, and for me, one of the things uh one of my learnings, and it's it's very useful for me at this time in our history, is like, what is what is radical interaction?
00:17:42.240 --> 00:17:45.440
Like what is a what is a what is a radical investment of my time?
00:17:45.599 --> 00:17:48.480
What is a radical way to engage politically?
00:17:48.720 --> 00:18:00.640
And it's easy to think about that for some at the level that is visible to us with uh the kind of stuff that Act Up did, which was crucial and important um for changing the narrative.
00:18:00.960 --> 00:18:12.720
But it's also these individual nurses who just said, you know what, I'm gonna, we're gonna turn this hospital into basically a palliative word for these infants that society has discarded.
00:18:12.880 --> 00:18:18.079
And we're gonna not, we're just not gonna let them be discarded, and we'll just make that our our contribution to history.
00:18:18.319 --> 00:18:27.599
And it's just such uh it's such an inspiring for me at this point in life, an inspiring way to think about how I might be able to live differently than I have lived.
00:18:27.759 --> 00:18:46.960
I I think there's a just a really um powerful moment in that episode where the nurses talk about uh actually burying right, hold holding a funeral for a four-year-old, I believe, who had who had lived and died his whole life in that ward, had had never had never been outside of Harlem Hospital in in his whole life.
00:18:47.519 --> 00:18:56.000
And um it just it it it was like a gut punch when like who paid for that funeral when that was when that was sort of re revealed.
00:18:56.160 --> 00:18:59.440
Can you I would I don't know if it was it you, Lizzie, that was doing that interview?
00:18:59.599 --> 00:19:02.160
Can you can you talk about like what yeah?
00:19:02.640 --> 00:19:04.720
Yeah, so basically, so it's interesting.
00:19:04.799 --> 00:19:22.960
Um, one of the doctors we interview is this wonderful man named Stephen Nicholas, and he actually found out early on that there were children from the hospital, probably in the early, early 80s, who sometimes would end up going to Heart Island because be being buried on Heart Island because there were no parents around.
00:19:23.039 --> 00:19:26.000
They were, they were dead or their kids had been taken from them.
00:19:26.160 --> 00:19:28.240
And so the child would become a ward of the state.
00:19:28.480 --> 00:19:33.759
And so then these nurses would organize, they would do two things.
00:19:33.839 --> 00:19:39.200
They would either raise money to bury the kids, or some nurses actually donated their own plots.
00:19:39.839 --> 00:19:44.799
And then they would hold a funeral at Bailey's funeral home across the street from the hospital.
00:19:44.960 --> 00:19:51.519
What's notable about that is really until probably 1987, a lot of funeral homes wouldn't bury people who died of AIDS.
00:19:51.680 --> 00:20:02.079
Um yeah, there was there was so much fear, so much stigma, um, that you couldn't, even in death, people wouldn't touch you.
00:20:02.240 --> 00:20:09.440
Um, and so they this place, Bailey's, became sort of the funeral home of choice for this hospital.
00:20:09.680 --> 00:20:11.440
And as Margaret Haggerty, Dr.
00:20:11.519 --> 00:20:22.160
Haggerty, says in our episode, you know, she realizes that when this child, James, dies just before he turns four, she says, you know, I realized that we were the child's family.
00:20:22.319 --> 00:20:24.400
And so we had to organize a funeral.
00:20:24.480 --> 00:20:25.119
And they did.
00:20:25.200 --> 00:20:29.119
And they the thing is they did that for so many children.
00:20:29.440 --> 00:20:46.000
And as time went on and um the hospital learned to sort of provide at least some treatment for people with HIV, not to cure the HIV or even stem it, but to at least sort of keep people alive through the infections.
00:20:46.160 --> 00:20:48.400
You did have more parents who were surviving.
00:20:48.720 --> 00:21:00.880
Um, and then the community continued to be a community, but one where parents were able to be more involved and they did remarkable things like um the parents and the kids would all go to camp together over the summer.
00:21:01.279 --> 00:21:10.079
Or uh when the children would come in for these immunoglobulin sort of antibody infusions, um, the parents would all bring meals.
00:21:10.319 --> 00:21:16.480
And all the parents brought so many meals that they created a cookbook of all these special meals that parents would bring.
00:21:16.640 --> 00:21:18.640
And you know, I don't want to totally glorify things.
00:21:18.720 --> 00:21:31.119
It was still fundamentally terrible what was happening, but nonetheless, within the space of horror and great need at a hospital which had been radically defunded and they didn't even have Robotusin because there were so few funds.
00:21:31.440 --> 00:21:32.400
It's the city hospital community.
00:21:32.720 --> 00:21:34.000
Harlem Hospital was a city hospital.
00:21:36.160 --> 00:21:44.160
And so you had community, you have people step up and they create family and community out of the chaos and emptiness.
00:21:44.319 --> 00:21:49.279
Um, and that was remarkable and kind of you know really inspiring to hear.
00:21:49.359 --> 00:21:54.640
And as Kai said, I now keep thinking okay, in this moment of so much need, you know, what do I do?
00:21:54.799 --> 00:21:55.440
What can I do?
00:21:55.519 --> 00:21:56.319
Because it's not okay.
00:21:56.480 --> 00:21:58.319
There are people who step up in these moments.
00:21:58.640 --> 00:21:59.680
Was it hard to find?
00:22:00.160 --> 00:22:00.319
Dr.
00:22:00.400 --> 00:22:04.160
Haggerty and and some of these other, you know, the nurses from that ward.
00:22:04.319 --> 00:22:08.880
I mean, like these were people who um I mean Dr.
00:22:09.039 --> 00:22:12.559
Haggerty's case was in her 80s, I believe, when you when you spoke to her.
00:22:12.960 --> 00:22:14.240
She she has since passed.
00:22:14.319 --> 00:22:20.160
And um, she was one of the first people that Lizzie and I went to talk to, actually, um, uh, out in her house in Queens.
00:22:20.480 --> 00:22:26.799
Um, and um, I mean, Lizzie's a fabulous reporter, so um, we were able to find a lot of people.
00:22:27.119 --> 00:22:39.680
Um, but um, I think what is most notable, um, and yeah, I don't know, you speak for yourself on this, Lizzie, but I think what was most notable was less finding them than when we would find them.
00:22:41.839 --> 00:22:48.240
I mean, really to a person, you it was like you poke them and it was just you had opened a floodgate.
00:22:48.480 --> 00:22:54.720
Um, and this is getting back to like where it's just so present tense for so many people still that lived this history.
00:22:55.039 --> 00:22:58.880
Um, they were like, oh, no one has asked me this.
00:22:59.119 --> 00:23:03.039
Um, one, and two, let me tell you everything in great detail.
00:23:03.200 --> 00:23:07.920
Um, because and it just it really felt like you were talking to people who were talking about things that happened yesterday.
00:23:08.640 --> 00:23:25.920
And I'd say, you know, pretty much to a person, everyone cried, which was actually kind of horrible, um, you know, to witness because at least for me, I went in as a reporter being fascinated and thinking there was something meaningful to explore.
00:23:26.000 --> 00:23:30.720
But as Kai has said so eloquently throughout this, this was real for people.
00:23:30.880 --> 00:23:32.720
It is real, it is raw.
00:23:32.799 --> 00:23:50.000
And I think because um we as a society haven't fully reckoned with this, so many people just moved on that there's this scab to use a cliche um that's just kind of formed over this part of people's lives.
00:23:50.400 --> 00:23:52.640
But but the wound is deep.
00:23:52.799 --> 00:23:56.240
The wound is still really deep, and people went through a lot of trauma.
00:23:56.559 --> 00:23:58.559
And unnamed and uncelebrated.
00:23:58.640 --> 00:23:59.599
You know, I mean, that's the thing.
00:23:59.680 --> 00:24:03.599
I mean, there's so much, there's a lot of this epidemic's history that has not been told.
00:24:03.759 --> 00:24:18.799
Um, but particularly the stories that we're telling here in the communities that we're talking to here, these are things that that just people never ask them to say, hey, you know, we think about there's a people I I've had a lot of conversations were uh about comparisons to COVID.
00:24:18.960 --> 00:24:26.160
Um, and one of the big things that is very, very different is there was no essential worker of the HIV epidemic.
00:24:26.319 --> 00:24:29.920
These people were not celebrated as heroes in real time.
00:24:30.079 --> 00:24:33.359
They were actually treated as pariahs and they did the work anyway.
00:24:33.599 --> 00:24:42.240
And and I think something else that comes across is that especially in that first wave in the first years of the early 80s, um, they were not trained for that.
00:24:42.480 --> 00:24:42.640
No.
00:24:42.960 --> 00:24:47.759
I mean, I think repeatedly the healthcare worker, I mean, later generations, you have them people who become HIV specialists.
00:24:47.839 --> 00:24:54.400
They, you know, they they enter that vocation um on purpose and go through med school or nursing school with that in mind.
00:24:55.039 --> 00:25:00.640
You know, I think there's a pediatrician in the podcast that says, like, I didn't come here to take care of dying children.
00:25:00.720 --> 00:25:03.039
Like, that is not a thing that I want to do.
00:25:03.119 --> 00:25:09.440
And yet there he was on the 17th floor of Carmel Hospital doing that for for years, right?
00:25:09.759 --> 00:25:12.880
Yeah, he stayed his whole life, 25, or you know, his whole professional life.
00:25:12.960 --> 00:25:16.960
And interestingly, returned during COVID as a volunteer worker.
00:25:17.039 --> 00:25:24.079
So you have we've we've talked to a number of doctors whose professional lives have been bookended by these two epidemics or pandemics.
00:25:24.720 --> 00:25:34.319
Let's talk about one of the doctors who whose life has also been bookended um by the by this and who I imagine was not a difficult person to track down at all, um, which is Dr.
00:25:34.480 --> 00:25:47.440
uh Tony Fauci, who many years before he became um, you know, one of our leading doctors about COVID and talking about COVID, had his start in public health working on HIV AIDS.
00:25:47.839 --> 00:25:49.839
Can you just briefly describe his role?
00:25:49.920 --> 00:25:56.319
And then I have a very specific question about like your interaction with him, which I found um compelling.
00:25:56.480 --> 00:25:58.079
Let me let me put it that way.
00:25:58.559 --> 00:26:02.559
Uh which so he's the head of the, he was, of course, the head of NIH.
00:26:02.640 --> 00:26:07.680
Um, he was one of the first scientists to respond to HIV as a consequence.
00:26:07.839 --> 00:26:09.599
He has been on the front line since the beginning.
00:26:09.680 --> 00:26:15.279
He's been debating what uh went right and wrong since the beginning as a consequence.
00:26:15.440 --> 00:26:23.599
Uh, I think Lizzie and I, and I think on the team in general, we actually have we don't have consensus on what we think about uh what Tony Fauci told us.
00:26:23.759 --> 00:26:24.400
Oh, all right.
00:26:24.480 --> 00:26:25.680
Well, let's let's get into that.
00:26:26.160 --> 00:26:28.480
Um Lizzie interviewed Tony Fauci.
00:26:28.640 --> 00:26:32.720
So you you know I'm curious to hear what Kai's gonna say too.
00:26:32.880 --> 00:26:33.359
So yeah.
00:26:33.519 --> 00:26:44.559
Well, so I you know, I feel like one of the premises of the podcast, I think you just you say this very explicitly in episode one is like we are going over this history to see what other decisions might have been made, right?
00:26:44.720 --> 00:26:47.839
Um, did did the epidemic have to look this way?
00:26:48.079 --> 00:26:58.240
Who where were some places where blind spots or um you know willful decisions made the epidemic look the way the way it does?
00:26:58.400 --> 00:27:04.079
And um, you do this sort of gentle, sort of tough exchange with with both Dr.
00:27:04.160 --> 00:27:23.119
Fauci and with with um Larry Altman, who was the chief uh medical science reporter at the New York Times at that point about you know word choices they made, um scientific choices they made that shaped the epidemic as a gay male, as a white gay male really disease.
00:27:23.519 --> 00:27:27.039
So, like were you, Lizzie, were you were you satisfied with their answers?
00:27:27.200 --> 00:27:32.319
How how did you find um their they they responded to the to that kind of line of questioning?
00:27:32.640 --> 00:27:33.839
Uh yeah, well it's funny.
00:27:34.000 --> 00:27:35.119
When I asked Dr.
00:27:35.279 --> 00:27:46.799
Fauci about uh the fact that, you know, there were women getting HIV from the very beginning, and we didn't hear much about that.
00:27:46.960 --> 00:27:52.640
There were black men and black women getting HIV um from the very beginning, drug users.
00:27:52.799 --> 00:27:56.480
He was like, Oh, I know where you're going with this line of questioning.
00:27:56.720 --> 00:28:00.000
He was like immediately jumped on me kindly.
00:28:00.079 --> 00:28:05.039
I mean, he was he was really fun to talk to in an interview, I have to say, and very generous with his time.
00:28:05.200 --> 00:28:08.400
But um, but he sort of tried to like cut me off at the past there.
00:28:08.559 --> 00:28:11.759
And, you know, he was sort of like, you know, I don't understand.
00:28:12.000 --> 00:28:14.480
I saw where this was, I wrote an article early on.
00:28:14.559 --> 00:28:22.799
And he did, in fact, write an article early on saying that this would be that HIV, which was then they didn't know about it, so AIDS would be transmitted broadly.
00:28:22.960 --> 00:28:30.400
And so he was like, I think it just there was a communications breakdown, you know, with your average doctor all over the country, and they just didn't really see this.
00:28:30.480 --> 00:28:33.279
And I'm as curious as you are as to what happened.
00:28:33.599 --> 00:28:37.200
He also said that kind of it things were moving really quickly.
00:28:37.279 --> 00:28:39.359
It took a while to figure out what was happening.
00:28:39.599 --> 00:28:41.039
He makes an analogy to COVID, also.
00:28:41.519 --> 00:28:44.880
Like COVID, things evolve very, very rapidly, right?
00:28:45.119 --> 00:28:45.519
Exactly.
00:28:45.680 --> 00:28:51.119
And obviously they evolved much more rapidly in COVID because we had almost 40 more years of expertise.
00:28:51.279 --> 00:28:52.720
Okay, and I totally grant that.
00:28:52.799 --> 00:28:57.920
And I have sympathy for kind of the fog of early medical war or whatever you want to call it.
00:28:58.240 --> 00:29:12.559
Nevertheless, um, I think if you looked at things like the um morbidity and mortality weekly report, which is sort of um, you know, kind of the in-flight newsletter or something of the CDC.
00:29:12.799 --> 00:29:21.440
Um, if you went out, you know, went to actual hospitals, talked to doctors, you could see where this was heading.
00:29:21.599 --> 00:29:31.279
Um, and you actually had by the late, mid-late 80s, you had women um going to the CDC and saying we're being left out.
00:29:31.440 --> 00:29:35.839
You had doctors saying women are getting sick and are being left out.
00:29:36.000 --> 00:29:51.839
Um, and you had the CDC kind of actively refusing to um to recognize the degree to which um people, in addition to gay men and often gay white men, were getting sick.
00:29:52.079 --> 00:29:58.400
Um, and so I do think there was just a longtime misogyny and willed blindness here.
00:29:58.480 --> 00:30:06.319
Um, and also I think the fact that many of the women who were getting sick um were, for instance, in this specific case, were low-income women of color.
00:30:06.640 --> 00:30:09.359
I think that just didn't matter too much.
00:30:09.599 --> 00:30:17.599
Um so I think there was a sort of willful blind spot um that we have to acknowledge.
00:30:17.839 --> 00:30:19.039
But I have sympathy.
00:30:19.680 --> 00:30:21.200
Do you see it that way also, Kai?
00:30:22.079 --> 00:30:24.720
I I mean, I yeah, so the short answer is yes.
00:30:24.799 --> 00:30:28.160
I think we're we're talking a matter of degree here in our disagreements.
00:30:28.319 --> 00:30:36.160
Uh uh, I I think I have more sympathy for the fog of not knowing what you don't know.
00:30:36.319 --> 00:30:44.559
Um certainly early on, I think it's inexcusable as long as it took to acknowledge that women were um getting AIDS and to change the definition.
00:30:44.640 --> 00:30:50.400
That's inexcusable as Chris uh very well charts uh in our episode on that subject.
00:30:50.720 --> 00:30:53.839
I don't think there's any there's anything to debate there at this point.
00:30:54.079 --> 00:31:08.559
But um but what but the this early the way in which the early narrative set in, then it was only this particular group, not just white gay men, white game in Los Angeles, San Francisco, and New York City, and primarily New York City, right?
00:31:08.720 --> 00:31:11.920
That that was a very specific group of human beings that were affected.
00:31:12.160 --> 00:31:30.079
And I think what I see in that for me is um the ways in which our institutions, both whether it was the CDC or mainstream journalism, were set up to create self-reinforcing narratives and self-reinforcing sets of facts.
00:31:30.240 --> 00:31:34.480
Um, and I think that you could have fed just about any set of facts.
00:31:34.559 --> 00:31:53.039
Um, in this case, we're talking about race and gender and class, but I think it would have been true if we were talking about like auto auto-reviews, um, the ways in which those institutions were set up to self-to reinforce the beliefs they already had and not prompt you to look beyond those beliefs.
00:31:53.200 --> 00:32:00.559
Um, I think that has certainly in journalism changed meaningfully over the course of my career.
00:32:00.720 --> 00:32:18.079
Um, and so you know, to take the Larry Altman example, you know, I asked him why didn't, you know, he was a doctor who was seeing the cases that we're talking about himself, um, but could not call them and was thinking in real time, this looks an awful lot like they're saying what those gay men have.
00:32:18.240 --> 00:32:26.799
But he couldn't make the step as a reporter of saying, well, wait a minute, I'm gonna ask questions about that, because that's just not what reporting was, in his idea.
00:32:27.039 --> 00:32:38.240
Um, and um, that is not a to me, I have sympathy, like that's not a critique of him uh as much as it is a critique of the way we understood these institutions and the way they were set up at the time.
00:32:38.559 --> 00:32:45.440
Well, I mean, in many, in many ways, sort of the history you tell is of people forcing themselves into the room, right, where decisions are made, right?
00:32:45.519 --> 00:32:52.400
And and you know, we should note that like even at that time in New York, there there were no out gay men in in politics, right?
00:32:52.480 --> 00:32:54.880
Yeah, much less at the New York Times, right?
00:32:55.039 --> 00:33:11.200
Um uh nevermind women, African Americans, like, you know, all of that was not represented in the um sort of elite rooms where this these decisions were made until your subjects force themselves into that conversation.
00:33:11.359 --> 00:33:26.960
I just I want to, you know, ask about one of those like crazy aha moments, right, in the podcast where you you talk about in one year, there is a 45% spike in the number of women formally diagnosed with with AIDS.
00:33:27.440 --> 00:33:34.880
Um and you know, someone might look at that stat and be like, whoa, a lot of women like contracted AIDS that year.
00:33:35.519 --> 00:33:36.720
That's not what happened.
00:33:36.960 --> 00:33:39.759
Um, what what actually happened there, Lizzie?
00:33:40.640 --> 00:33:46.160
Yeah, so it's a it's a really good question, and it's gonna take a minute to kind of unravel, so bear with me.
00:33:46.400 --> 00:33:56.799
But as I said, women were really unrecognized, underrecognized by the government and medical establishment as people who are part of the HIV and AIDS crisis.
00:33:57.039 --> 00:33:59.440
Um, and there are a bunch of reasons for that.
00:33:59.599 --> 00:34:04.640
But what this meant is that the literal definition of AIDS.
00:34:04.799 --> 00:34:16.400
So there's obviously there's HIV, which is the virus, um, and there's AIDS, which is sort of a syndrome that happens when the virus is really, really advanced and your immune system begins to collapse, you get really sick.
00:34:17.360 --> 00:34:53.920
So um basically, by the late 1980s, you had women who were being diagnosed with HIV, but AIDS itself, that that sort of moment when people got really sick, the definition of what AIDS was and the symptoms that caused or that that were AIDS, um, that was predicated entirely pretty much on symptoms that were being seen in gay men, um, in men, really, um, on in male bodies, um, and um and also in slightly more affluent people.
00:34:54.320 --> 00:35:02.159
Um, and so because women didn't fit the criteria for AIDS, they weren't actually getting diagnosed with AIDS.
00:35:02.320 --> 00:35:16.079
So they could have HIV, they could be incredibly sick with, say, a bunch of gynecological symptoms like pelvic inflammatory disease and terrible uh other things, and um, and yet not qualify for an AIDS diagnosis.
00:35:16.239 --> 00:35:17.760
And that had consequences.
00:35:18.000 --> 00:35:19.599
And that had serious consequences.
00:35:19.760 --> 00:35:26.000
It meant that you couldn't qualify for a bunch of government benefits like housing vouchers and unemployment.
00:35:26.159 --> 00:35:29.840
Um, it meant and and and housing and things like that.
00:35:29.920 --> 00:35:34.400
Um, and then that could put women, if they couldn't work, at risk of losing their children.
00:35:34.639 --> 00:35:43.679
So at the moment, these women are literally dying, and as sick as they could be, they had to worry about health benefits and keeping their children and getting a house and all sorts of things like that.
00:35:43.760 --> 00:35:45.039
So the consequences were huge.
00:35:45.199 --> 00:35:53.840
Also, a lot of women just like they didn't think they could get this illness because none of all these things they were experiencing, they weren't what they were being told was AIDS.
00:35:54.239 --> 00:36:17.440
Um and so there was this massive fight beginning in the late 80s through 1993, where a bunch of activists led by women and often led by women with HIV and AIDS, um, they demanded that the federal government change the definition of AIDS so that it included symptoms that were more expansive, symptoms that were being experienced by women, also that were being experienced by drug users.
00:36:17.599 --> 00:36:20.480
Um and they were victorious.
00:36:20.559 --> 00:36:22.159
Uh, victorious is probably the wrong word.
00:36:22.320 --> 00:36:32.960
I mean, it's hard to describe something so basic and essential as a victory, but they um they managed to convince the central the centers for disease control to change the definition of AIDS.
00:36:33.039 --> 00:36:47.840
They also managed to convince the Social Security Administration to update its definition of AIDS so that women that when they were getting, you know, as sick as they were going to get, when they were almost dying, could be counted as having AIDS and um and would get these benefits.
00:36:47.920 --> 00:36:51.440
And so what happened in 1993, the definition changes.
00:36:51.519 --> 00:37:04.960
So all these women who formerly definitely had AIDS, but just weren't meeting the definition for it, all of a sudden, boom, they get sort of uh wrapped up in the definition.
00:37:05.039 --> 00:37:06.559
They qualify for the definition.
00:37:06.639 --> 00:37:12.880
And so that's why the definition all of a sudden, sorry, that's why the number of cases just jump 40, 45%.
00:37:13.360 --> 00:37:23.039
So translate what that means is before that moment, 45, you know, all these women, that 45% had AIDS, but just weren't being counted as having AIDS.
00:37:24.320 --> 00:37:26.800
Um I have one more question for for both of you.
00:37:26.960 --> 00:37:32.239
So, you know, you're researching and reporting this, I imagine, during COVID, right?
00:37:32.480 --> 00:37:50.239
Um through that and and recording it, you know, in in the last few years, and um you know, and and and I, you know, I think as I was also experiencing that pandemic, um, you know, it it struck me that some of this history really informs that moment.
00:37:50.639 --> 00:38:01.360
And um and some of the things like we have learned as a as a city, as a society, as um activists have have have shaped our response.
00:38:01.519 --> 00:38:04.079
Did you find those residences too?
00:38:04.159 --> 00:38:08.079
And what what what sort of struck out um stuck out for you there?
00:38:08.800 --> 00:38:29.519
I have to say, I mean, the more I did it, the more I found not the resonances, but the differences, you know, um in that one, as I said before, the the the the COVID was a play, it was a time in which so there were so many um everybody felt like they had a stake in this.
00:38:29.599 --> 00:38:36.320
That was absolutely not true um throughout the 80s for both the people affected by HIV and the people responding to it.
00:38:36.480 --> 00:38:41.119
It was an isolating experience um in which he retreated as a pariah.
00:38:41.440 --> 00:38:50.320
Um no one was banging wind pots out the window on behalf of anybody with HIV at any point in this epidemic, actually, to this day.
00:38:50.559 --> 00:38:59.920
Um and uh when you talk to people who live through that time, that's the first thing they'll say to me about um the differences with COVID.
00:39:00.159 --> 00:39:09.519
Um and then the similarities, uh, unfortunately, are uh that there are lessons we appear to not have learned.
00:39:10.000 --> 00:39:16.000
Um you know, uh as Lissy said so eloquently, this is a so this was a social disease.
00:39:16.159 --> 00:39:18.480
HIV was and is a social disease.
00:39:18.719 --> 00:39:33.599
Uh there um and um all of the inequities that we see in HIV were repeated in COVID um uh and around race and gender, um and who got it and who died from it and who had access to care and who didn't.
00:39:33.679 --> 00:39:35.440
Um we just did that again.
00:39:35.599 --> 00:39:55.280
Um and I think we have seen something similar in the post-COVID years of um those of us who, when we started with the when the epidemic got manageable for most of us, and we could figure out how to like get the masks out when we needed to and stay home when we needed not to.
00:39:55.519 --> 00:39:59.039
Those who could not do that, the epidemic remained unmanageable.
00:39:59.119 --> 00:40:03.760
Um, if you had to go to work, uh the epidemic remained unmanageable.
00:40:03.920 --> 00:40:08.559
Um, if you had uh pre-existing conditions, um the epidemic remained.
00:40:08.719 --> 00:40:20.400
So there's just unfortunately, um, when I look at the comparisons between COVID and HIV, uh it is one of the hard, it's one of the darker parts of this story to me.
00:40:20.719 --> 00:40:21.840
Lizzie, what about you?
00:40:22.159 --> 00:40:36.559
Yeah, I think I would just add that as I was learning about HIV, I had this constant sense of frustration because I felt like the activists then were telling us what the problems were then and are now.
00:40:36.960 --> 00:40:43.280
And if we had listened, maybe we could have avoided some little margin of the pain of COVID.
00:40:43.519 --> 00:40:52.960
So, what I mean specifically is you had activists then, you had people then, people with AIDS who are saying, it is inequality that is exacerbating this.
00:40:53.039 --> 00:40:55.760
It is stigma that is exacerbating this.
00:40:55.920 --> 00:40:57.440
Um, it is racism.
00:40:57.679 --> 00:41:07.360
And in fact, into the uh the episode that just went live, which is beautiful, um, which is about really focuses on Harlem and the black community's response.
00:41:07.519 --> 00:41:16.719
Um, we hear from this poet Craig Harris, who storms a uh public health meeting, the stage at a public health meeting, or not storms, but he he sort of claims the stage health meeting.
00:41:16.880 --> 00:41:18.000
Yeah, okay, thank you.
00:41:18.159 --> 00:41:22.960
Um, and he basically says, you know, you all are missing the picture.
00:41:23.679 --> 00:41:30.159
Racism and heterosexism and classism are all affecting this illness.
00:41:30.239 --> 00:41:33.199
They are shaping it and they are leaving people out.
00:41:33.440 --> 00:41:34.559
How dare you?
00:41:34.719 --> 00:41:37.280
And that was 40 years ago almost.
00:41:37.519 --> 00:41:50.000
And I feel like if we had paid more attention, we, whoever we are, you know, uh, we as a community society had paid more attention to the lessons of HIV, to the lessons that people were shouting at us.
00:41:50.880 --> 00:42:01.280
Maybe we would have been a little bit more prepared for um how COVID would strike with so much inequity.
00:42:01.519 --> 00:42:28.880
Um, and so I think for me, this period um of HIV and AIDS that we focus on is filled with lessons like that, um, that just keep echoing through the decades and that I am consistently um both horrified by and in awe of the fact that people understood with a sharpness that is mind-blowing what the solutions needed to be, um, how what we needed to see, what we needed to do.
00:42:28.960 --> 00:42:31.280
And so it's a touchstone for me.
00:42:31.360 --> 00:42:36.159
You know, I can look back at that moment and say, all right, here's how I should behave in the present.
00:42:36.719 --> 00:42:41.199
The podcast is called Blind Spot, The Plague in the Shadows.
00:42:41.440 --> 00:42:46.960
Uh, episode four um is called uh Respectability and the Politics of AIDS.
00:42:47.119 --> 00:42:47.760
Did I get that right?
00:42:47.840 --> 00:42:51.199
Or or Respectability Politics and the AIDS epidemic.
00:42:51.519 --> 00:42:52.719
And the AIDS epidemic.
00:42:52.880 --> 00:43:11.840
Um, I I I encourage all FAQ listeners uh to uh listen to FAQ again, but also to uh to to tune in to this this wonderful, wonderful podcast that um two people that I am very honored to call friends, um Lizzie Ratner and Kai Wright um have brought into this world.
00:43:12.400 --> 00:43:13.440
Thank you, Richard.
00:43:14.079 --> 00:43:15.360
Thank you so much, Richard.
00:43:15.519 --> 00:43:16.639
It's so great talking to you.
00:43:17.039 --> 00:43:17.760
Total pleasure.
00:43:17.840 --> 00:43:18.559
Thank you.
00:43:18.880 --> 00:43:30.159
F A Q FAQ NYC is headquartered of the city, a nonprofit, nonpartisan newsroom dedicated to hard-hitting journalism that serves the people of New York.
00:43:30.400 --> 00:43:34.480
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00:44:13.840 --> 00:44:18.400
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00:44:18.480 --> 00:44:31.440
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00:44:31.679 --> 00:44:34.880
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00:44:35.119 --> 00:44:38.480
Our host this episode is Richard Kim, editor-in-chief of the city.
00:44:38.639 --> 00:44:42.639
I'm our executive producer, Harry Siegel, and our engineer is Adam Kamara.
00:44:43.039 --> 00:44:52.880
A special thank you to our guests from The Plague in the Shadows, the new season of the Blind Spot Podcast, Kai Wright of WNYC, and Lizzie Ratner of the Nation.
00:44:52.960 --> 00:44:55.760
And thank you, listener, for joining us and making it this far.
00:44:56.000 --> 00:44:59.199
Be kind, be cool, and we'll be back soon with more.
00:45:02.880 --> 00:45:05.679
Hey, thank you both for a terrific conversation.
00:45:05.760 --> 00:45:09.760
That was fascinating to uh be a flying the wall for.
00:45:10.079 --> 00:45:12.480
I'm excited to listen to the podcast.
00:45:12.719 --> 00:45:13.039
Thank you.
00:45:13.280 --> 00:45:15.920
I'm guilty not having started yet.
00:45:16.159 --> 00:45:18.639
Kai, it's a lot of podcasts, Aaron.
00:45:19.280 --> 00:45:21.440
Oh Lord, and I I don't listen to any of them.
00:45:21.679 --> 00:45:22.400
Don't tell.
00:45:23.199 --> 00:45:39.920
But I did want to ask you, Kai, what you thought of Fauci in this conversation, and as you're thinking about the connections between then and and now or more recently and these these two social epidemics.
00:45:40.400 --> 00:45:41.760
What do I think of Fauci?
00:45:42.559 --> 00:45:54.000
Um you're reacting, Kai, like every AIDS activist I know from Act Up.
00:45:54.400 --> 00:46:02.320
Like Peter, like all of them have that same reaction, which is like they were on the other side of the barricade from him for so long.
00:46:02.559 --> 00:46:10.000
And then there's this sort of weird respect and understanding and also tension and antagonism that kind of remains.
00:46:10.239 --> 00:46:34.320
Well, because this isn't because this is a man who has been willing to listen, like that's the thing is like Tony Fauci has from the beginning of age through COVID been somebody who has been at the center of power for public health and has been willing to say when I am wrong and I need to change and to change.
00:46:34.480 --> 00:46:48.960
Um and so I think he's earned a lot of people's respect as a consequence of that ability to change at the same time as a consequence of having been at the center of power for so long, he has been on the wrong side of a lot of decisions too.
00:46:49.119 --> 00:46:52.559
Um and uh and I think both things are true.
00:46:52.639 --> 00:47:02.719
And I think it's one of those things with this epidemic, with our politics, with life in general, we struggle with the word and um, and both and constructions.
00:47:02.800 --> 00:47:07.599
And I think with Tony Fauci, you really have to embrace the word and.
00:47:08.000 --> 00:47:18.960
You can't do 40 years of uh of public health from the top of the federal government and not have some good, some bad, and some ugly involved.
00:47:19.679 --> 00:47:23.039
And just one more thing I wanted to ask.
00:47:23.519 --> 00:47:29.360
There was that Times piece outing Ed Koch, sort of, after his death.
00:47:29.840 --> 00:47:38.719
Or outing an Ed Koch is complicated, but he never spoke of himself as a gay man publicly.
00:47:40.559 --> 00:47:52.800
And uh with these communities that are doing, that we're doing, and that often continue to, what the government is not, and we're not putting aside common resources for.
00:47:54.159 --> 00:48:14.800
I'm just wondering, and we never get to run these things back, if things could have played out differently if we had a New York like the one uh we have now, where you know, and Koch would have been the highest profile okay politician, not just in New York City, but in America, if he had come out.
00:48:15.280 --> 00:48:17.360
And that's not all that long ago.
00:48:18.079 --> 00:48:31.920
So uh I I think about that, and and if the public recognition could have been different, if the the conversation doctors had and the public had could have been different, if we could have bridged that gap sooner.
00:48:33.360 --> 00:48:56.000
It is certainly the case that as Richard said, the history of this epidemic is people who standing up and saying, actually, here I am, and you have to see me, you have to deal with me, you have to respond to me, and in doing so, changing their own relationship to um the facts and what the epidemic needs to be.
00:48:56.400 --> 00:49:08.960
And um had Ed Koch been able to own his relationship to the gay community at that time, would he have made different choices sooner?
00:49:09.119 --> 00:49:17.199
Um, would he have been uh a global leader in uh changing the conversation and the policy?
00:49:18.159 --> 00:49:20.239
Uh, we'll never know, you know.
00:49:20.400 --> 00:49:21.760
Uh we'll never know.
00:49:22.079 --> 00:49:42.159
But um certainly it's the case that uh many who did come out who weren't many, there were many gay men who were not out at the start of this epidemic, and the epidemic prompted them to change their relationship to their sexuality, and as a consequence, they changed history.
00:49:42.320 --> 00:49:44.639
So maybe Ed Koch would have been one of them.
00:49:45.039 --> 00:50:04.159
You know, um Randy Schultz, the the the journalist and and early AIDS historian makes a uh a really fascinating point in in his book and The Band Plan on, which is that Koch wasn't just like in the closet, he actually was very actively throughout his political career trying to distance himself from the gay community.
00:50:04.320 --> 00:50:10.639
And that included to like not fund gay organizations during the epidemic.
00:50:10.800 --> 00:50:21.199
And and Schultz points to San Francisco, where which Diane Feinstein was the was the mayor of at the time, straight women, who also was like sort of a center liberal person.
00:50:21.360 --> 00:50:28.079
And that city, which was one-tenth the size of New York City, had a budget for AIDS 10 times larger than than New York.
00:50:28.559 --> 00:50:38.400
Um so you know, there are choices um people made and that were were were shaped by you know the the the other decisions they had they had made prior to that.
00:50:40.400 --> 00:50:42.320
Um I have to run, guys.
00:50:42.639 --> 00:50:43.360
This is amazing.
00:50:43.440 --> 00:50:44.239
Thank you, Richard.
00:50:44.639 --> 00:50:46.320
Can we get together in real life?
00:50:46.559 --> 00:50:47.440
Yes, please.
