Hi, I'm erin Welsh and I'm erin Allman Updike.
And this is this podcast will kill you.
Before we start off, we first want to ask you to make sure that if you're not subscribed, that you do so now, because this is our last episode of the season and we don't want you to miss next season's premiere or all the super fun bonus episodes that we're going to have in the interim.
The subject of this week's episode is HIV and AIDS, and we were fortunate enough to interview three individuals who shared their experiences with us.
Well, my name is Frank and my last name is I am Ellie. I'm sixty five, gay man. I live outside of Boston. I was about twenty seven, I guess or twenty eight when we first started to hear about it. I remember distinctly walking into work one morning and this woman I work with, she hadn't read the news, and she said something about, hey, have you heard about this gay plague that's going on, this gay cancer, and I
was I had never heard of it before. You know, you started hearing that, well, this one's not well, and then this one's not well, and it just sort of mushroomed from there, so within I would say about a year and a half to two years of reading about it in the paper, it had hit Boston like crazy. So I think in times of crisis, your true self really comes into being. And I've always thought of myself as kind of a really nurturing kind of a guy.
And it was just my first instinct was when people around me that I loved and cared for were getting sick, that you know, there was nothing that was going to keep me away from helping them. And you also have to keep in mind for a fair number of people, I won't say all of them whose families had abandoned them. You know, we were their only family, and so we
took care of them. We clean them, we fed them, you know, we socialized with them, We tried to keep them in good spirits and all of that and basically just be with them, you know, through the end. I mean, I can't tell you how many people have sat and held their hands until they died. It wasn't easy for me, but I knew I was doing the right thing for them. But the bigger thing is in retrospect, when I was sort of when I was growing up, I always once
I started making friends. I mean, we had a really large circle of friends in a very very strong gay community at the time, and I remember thinking in the late seventies early eighties, I had such a wonderful group of friends that I thought, this is going to be wonderful. You know, we're all going to grow all together, we'll all take care of each other as we get older. And they're all gone. The whole family that you created,
it's just gone. I've got, like, maybe I don't know, four or five friends left from that time period, and you know, I cherished them, but the larger community, it's just weird to realize that everybody that you loved is gone. I even lost my partner to age two, and honestly, that's one of the reasons that I'm doing this today is, you know, if we don't tell our stories about what happened, who will.
My name is Hillel Wasserman. I live in Los Angeles, California, and at present time, I work in the emotion picture business. At the time that I first learned about HIV, I was about I guess I was in my late twenties. We started to hear these whispers about this weird gay cancer that was going around, which you know a lot of us discounted because come on, cancer.
Isn't a communtal disease.
How can you, you know, transfer cancer from one person to another. It must just be a way for the repressive society that we were living in to kind of cuash the gay you know, liberation revolution, whatever we were doing, and so, you know, it was easily discounted. But it was getting harder and harder to overlook. Guys were getting together for funerals more often than we were getting together for brunch, and people were showing up at the gym
that looked like walking skeletons. It very much became a reality for me when I woke up one morning and I saw four purple spots on my legs. I jumped in my car and I ran to my doctor and I marched into his office and I pulled down my pants with my legs and I pointed it at them and I said, look, I said, I've got the spots. They're ks. I'm going to die. Right. He took a long breath and he said to me, finally, hello, He said,
what you have on your legs are bruises. It was kind of, but it had really kind of gotten to be enough for me because every time I had a cold and last the extra week, I'm running to the doctor. Every time I got out of shower and get a check on me and saw something new grown on me, I'm running to the doctor. And every time we had the exact same conversation. And so he said to me, He'll alway says, I'm happy to give it the eighth sests, but you have to be prepared for a results you
may not like. And I said, you know what, I said, I'm a UCLA graduate, I am good at taking tests. Give me the age sest. And so there I was sitting in my beautiful office when I get a phone call from the doctor after those seven days to tell me that the test results came back and they were positive. And he started to talk to me about statistics, about the odds right, about getting my affairs in order, which
is doctor code for get ready to die. And as I sat there and listened to all of that, all I could think of was, oh my god, how am I ever going to tell my parents?
And that was it.
I mean, I controlled that information very very tightly until I couldn't anymore. In nineteen ninety five, eight years after taking that test, finally, finally, the rain started to fall. I developed HIV related non Hodgston's lymphoma, which is luphatic cancer. And there I was. I wasn't quite forty years old. I was thirty nine. I've never been in love, I'd never been to Israel, I'd never been, never done so many of the things that I hoped and wish that
I would do. And yet well your March, you know, and that was twenty three almost years ago, and still here. How how does he do it?
You know?
What is the magic formula of the secret weapon that I possess? Well, it's drugs. Not the kind that we took back in the day. Oh dude, So these are HIV drugs. So when I ask myself for people ask me how HIV has affected my everyday life, I mean, seriously.
How can it not.
At one point I was taking medicine six times in a day. Seriously, who takes that much medicine? Normally no one does six people take medicine. But as I've grown fond of saying, I may have HIV, but it doesn't have me.
My name is Brian Jackson. And I'm from Saint Louis, Missouri. I am a motive based on speaker and life coach. What else is there to say about me? I'm cool and I think one of the most important things, because we're talking about this on the podcast, is I'm HIV positive. My story is a little bit different about how people contract HIV. When I was eleven months old with my father, who was a forbotomist at a hospital, decided to steal HIV painted blood and come over to a hospital that.
I was staying at.
I was admitted for my asthma attack, and he got my mother out of the room and then sinsoring injected me with the HIV bias, hoping I would die off and he wouldn't have to pay shot support. Not only where at HIV, it was also uncompatible blood, and so my BiDi signs started going out of whack. I was screaming and crying. No one could figure out what was going on with me. They transferred me to another hospital. Twenty four hours later, I was stabilized and everything was okay.
In nineteen ninety six, one for being this playful hockey and the jet of five year.
Old to dispload the beavers sick kid.
In the matter of months, my body began to break down and doctor started testing me for numerous diseases even forever and sent another country. In conclusion, they came to say, you know, I know he's not at risk for HIV, but let's text him for HIV. The results came back and I was diagnosed with full blown AIDS. Given five months to this, my tea cell account was at zero. They put me on twenty three or medications through IVY in a Vatican team Jess's daily The majority of those
were not available for SHIVEN at the time. But three months past, five months past, and as I stand before you today, wasn't supposed to see my sixth birthday, but come next month we celebrated my twenty seventh birthday. Well, how people and my family were very receptive towards it. They wanted to get educated and they wanted to, you know, be a part of my life. But on this social atmosphere, I wasn't always I was left at a birthday party,
social event. My oldest sister, who has a different father, Her father decided to take out of her life because he didn't want to be associated with the HIV family who is even left out of birthday parties and social events. I lost a lot of friends. I couldn't play sports and staff growing up, even though I'm a very athletic person. I did find my calling and cheerleading though, and I am a state champion. Even after I came clean with my story and said, hey, I don't care about what
you guys think, like this is who I am. HIV doesn't defy me, and I started showing people that I was lobbying in Washington, DC. You know, some of the ignorance went away, but still the ignorance is still consistent. But in twenty eighteen, there's you know, we have great medications that can help people live long and healthy life
and be undetectable. Most people can have a zero physic chance of passing under by it, but a lot of people the stigma is still live and real, so where people don't want to go get tested, or when people contracted by it, they automatically think I'm I'm going to that, and that's not the true. It's like people who are living with can be successful lives, and people who are not with HIV positive people who are probably gonna always remain HIV negative.
Yeah.
Wow, wow, those I mean, those stories were so incredibly touching. Yeah, thank you again to Frank, to Hillel, and to Brian for for sitting.
Down with us to tell us those stories and for being willing to share your stories with our listeners.
And next week, listeners, we are going to be releasing a bonus episode in which Frank, Heillel, and Brian will be telling their more of their stories in detail, and we want you guys to tune into that because it's going to be absolutely incredible, So please keep an ear out for that.
Yeah, all right, this week.
We are we don't have a quarantine for you, no, nope. But what we will advise you to do, which is what we're doing, is just make yourself a drink whatever you have, yep, and sit back and get ready to learn.
Yeah.
I was thinking about it before we started recording this. And you know how if you listen to this American Life, sometimes it's like you're laughing and it's a funny one. And sometimes you're like, wow, gosh, that was really interesting. I learned a lot. And then sometimes you just cry. Yeah, like the whole episode you're just bawling. Ours is that one welcome to this podcast. Will tell you this American Life edition the Crying the Crying episode, not really but
kind of. Well, it's a very serious topic. Not that, not that all the ones we've discussed have been serious topics, but because this is so recent, it really does hit a nerve and there are a lot of very serious issues that we're going to discuss in it. So all right, business is out of the way.
All right, Biology time.
All right, So it's nineteen eighty October, Los Angeles. Okay, you're a physician. Okay, a thirty three year old man comes to your hospital complaining of a fever for about two months. His liver enzymes are elevated, which is not good, and his white blood cell count is pretty low, and a fever for two months. Two months, it's a pretty long time. He's also infected, as it turns out, with cidamegalovirus, which is a pretty common virus that generally doesn't cause
any problems unless a person is immunocompromised. You run a whole bunch of tests and you diagnose him with pneumonia caused by a fungus called Pneumaicistus corinnei. Weird it's really not common, especially not in otherwise healthy young people. You also diagnose him with oral candidiasis, which is another fungal infection, this time of the mouth instead of the lungs. Unfortunately, his condition deteriorates despite attempts to treat with antifungals, and
the patient dies. In May of nineteen eighty one. Cut back to April nineteen eighty one, another patient presents to your hospital in LA with strikingly similar symptoms. Then you find out that in January and February of nineteen eighty one at another hospital, two other men presented with the same cluster of symptoms, and in April at yet another hospital,
the same. So that's a total of five otherwise healthy young men aged twenty nine to thirty six who were diagnosed with fungal pneumonia and fungal infections of the mouth as well a cluster A cluster. This is not normal.
No.
By nineteen eighty two, the CDC had received reports of a cluster of nineteen cases of PCP. That's numrosistous carinia pneumonia, not the drug not the drugs, and something else called Caposi's sarcoma, which is a viral induced cancer cooposi. Sarcoma leaves these characteristic purple lesions on your skin, and before this time pretty much only ever affected much older men or severely immunal compromised people, and generally was a very slow progressive disease.
And it wasn't even known at that time that it was caused by a virus.
Right.
Yeah.
Of these nineteen patients, eleven of them died. WHOA. At first, these case reports were almost exclusively popping up in gay men. However, they quickly started seeing cases similar case in patients with hemophilia, in intravenous drug users, in infants, and so something was clearly happening, and at the time physicians and public health professionals had no idea what it was, but we do now.
What was happening was that each of these men and women and children were suffering from what we now know of as AIDES acquired immune deficiency syndrome, which we now know means they were infected with HIV human immuno deficiency virus YEP.
So that's how it begins.
This is how it begins. So what is HIV. HIV is a retrovirus. Okay, the first actual retrovirus that we're going to talk about on this show. So we're going to do a quick virology one on one course.
All right, hey, but come on, it's been several years.
Let's do it. All right, it's time. Then you need a refresher for sure. All right. So, the other RNA viruses that we've talked about on this show, like influenza and yellow fever, when they get into your cells, they basically hijack your cells machinery and force your cells to start making protein. Normally, RNA codes for protein.
Okay, So these.
RNA viruses basically tell your cells get busy, mech and more of me, and your cells are like, okay, whatever, your cells mid and scary, okay. But retroviruses do something a little bit different. Retroviruses, which are also RNA viruses, get into your cells and they bring along an enzyme of their own called reverse transcriptase, and that enzyme makes copies of their RNA, but not just regular copies. It
actually makes DNA copies. And so now this viral DNA is in your cells, I can just swoop its way straight into your DNA.
So it's a lot of a it's a sneakier tactic.
Exactly, And so it literally fits this viral DNA into your genome and that makes it a lot harder for your cells to target. And it basically means that whenever your cells replicate, they'll replicate not only your DNA, but this viral DNA as.
Well, which is like a background replication exactly.
Yes, and then eventually those copies of viral DNA will do what DNA normally does, and that is make an RNA copy, make some protein, and then get to work making more viruses. And HIV is really good once more viruses are made at spreading from cell to cell. It has a bunch of crazy mechanisms that are too complicated for our virology one on one course, okay, So we're just saying that it basically has several different ways that it can perpetuate itself and selectively spread to more and
more cells. So that's HIV one oh one all right, Okay, So there are two main subtypes of HIV, HIV one and HIV two.
All right.
HIV one is what the overwhelming majority of people are infected with, and it's the more virulent strain.
Okay, that's the pandemic strain.
Exactly right, HIV T is pretty much confined to West Africa.
Okay, but within these.
Two strains there's considerable genetic variability. And if you remember all the way back to leprosy.
I think I can remember that far back, which.
Was our slowest reproducing pathogen exactly. Well, HIV makes one hundred billion copies of itself every.
Day, what I know.
Hold on, I feel like I should have double checked that number, because it's really over one hundred billion, yeah, with a B every day, every day, every day day. And because it's an RNA virus and a retrovirus at that, it has a super high mutation rate, so it's constantly replicating and it's constantly changing, and so it's really hard for our immune system to target, and it mutates a
lot faster than our drug development can keep up with. Yeah, okay, So okay, how does this actually end up causing what we know of as eights? That's the real question.
Yeah, tell me about it.
So HIV is spread via extremely close contact with a few bodily fluids, blood, semen, vaginal secretions, that sort of thing. So I'll just say it in case anyone listening doesn't know which I assume all of our listeners do know m You can't get it by kissing, touching, high fiving, hiking hands, hugging, none of that. It's really extremely intimate contact, sex, sharing of needles, blood products, things like that. So when HIV enters your body, it's not just infecting any random cells.
It infects several different immune cells. You've probably heard of CD four counts in relation to HIV, yes, well, CD four cells are a type of T cell, which is a lymphocyte or a white blood cell. CD four T cells are also called helper T cells, so their job in your body normally is to help activate other white blood cells to promote an immune response. They also make something called cytokines, which we've talked a bit before about on this show, right, But basically those are proteins that
help in your immune response. So CD four T cells are basically helper cells that are activating your immune response. And one thing that they do that's really important is activate another type of cell called your B cells, which are the cells that make antibodies.
So it seems like a lot hinges on CD four numbers exactly.
So when people talk about their CD four cell counts they're literally talking about how many CD four T cells they have left in their body that haven't been destroyed. But the mechanism of CD four T cell destruction in HIV is actually unclear at this point, even to this day. Yeah, I think that's so fascinating. So I would have assumed that, like malaria, for example, when malaria parasites replicate in your red blood cells, they burst out and destroy your red
blood cells in the process. Well, that's not what happens in HIV. When HIV re implicates in your CD four T cells, it actually buds out.
Huh.
I tried really hard to think of an analogy for that, but I couldn't come up with one.
Wait, let me think of one for a second, because I know that there's one.
The best I came up with was it's like if a bowl of you're making meatballs, and the whole bowl of meat is your CD four cell and you take one meatball out at a time, Like that's okay, Okay, it's not great. I feel like we could do better.
No, I definitely, I feel like maybe it's just that I have seen a YouTube video with.
This with this butting off right, Yeah, little viral particles butting off, they take a piece of that plasma membrane with them, so that's again making them harder to see in your body because they're covered in your own lymphocyte tissue, right, so they hide out exactly. Yeah, but at the end of the day, what happens is you have depletion of these T cells. Your body's no longer making citokines or other proteins. You can't make antibodies as effectively because you're
not activating B cells. So usually what happens when you get infected with HIV is this replication happens really quickly, within ten days. The patient usually has really high viremia, so tons of viruses in their bloodstream, and at first this is going to activate a massive immune response.
And just to clarify this is a person who has been infected with HIV exactly that we're not talking about AIDS quite yet, right, we'll get.
To exactly what happens with AIDS exactly. So when you get infected with HIV, at first HIV is going to replicate in your body. You'll have a massive immune response and a large proportion of those virally infected cells will be actually destroyed, which is great. So during this time you'll have a primary HIV infection. You might have a fever, you might feel like you have the flu, but mostly this is a transient illness. You might not even have
any symptoms at all. Your body is doing what your body is supposed to do when you get an infection, and it fights it off. So usually by about twenty eight days after exposure to HIV, your body has controlled or suppressed the initial infection and viriemia is reduced drastically. The problem is it doesn't eliminate it. This virus, like we've said, is really hard for your body to detect, and so you end up with the latent stage of HIV.
Okay, so it's.
Hanging out, it's quietly, slowly replicating, and eventually, albeit slowly, it will deplete your city for T cells, making it impossible for your immune system to fight off opportunistic infection. This can take anywhere from three to twenty years. Wow, but on average about fifty percent of people who are infected with HIV and are untreated will progress to AIDS within ten years.
Ten years.
Yeah, so the incubation period for HIV itself, the virus is only about seven to ten days, but the incubation period for AIDS is about ten years. And one thing that's really important is that the infectivity of HIV really depends on your viremia. So you're far far more infectious at that early stage, say within the first month of infection, because your viral load is insanely high, whereas after that, for a number of years, you're actually not very infectious.
And then again when you reach the aid stage, your viremia increases again and you become extremely infectious. Okay, So there are four recognized stages of an HIV infection, all of which are classified by measuring your CD four T cell count and then also looking for specific symptoms or opportunistic infections associated with AIDS, and that is the ultimate
stage of HIV infection. So that's what those doctors were seeing all the way back in the eighties, and at the time, they had no idea about everything that had been happening in that patient's body for years prior to their presentation with AIDS. So tell me how all of this happened, Darren, Oh, okay, yeah, So how did we end up with this global pandemic.
I'm going to try to answer that. The history of HIV and AIDS is a big one. And I'm dividing the history of this modern plague into four acts. This American life, right, I said so, from its earliest beginnings in Central Africa, to its eruption in the US in the eighties and nineties, then to the failures of the government, and then the heroic actions of advocacy groups, and finally to the development of effective treatments and the emotional fallout
of the pandemic. Let's start Act one, origin nineteen o eight to nineteen eighty two. Let's take a trip in space and time back to Central Africa in the early nineteen hundreds, to a lush rainforest filled with the sounds of exotic birds and a chorus of insects. In this rainforest stood a hunter. He was there to check on the snares he had so carefully laid a few days earlier, and luck in, one of the snares was a chimpanzee.
The hunter quickly and efficiently killed the chimp, But in the process of butchering the chimp, the hunter sliced his own hand, and some of the chimp's blood flowed into the fresh wound. Unbeknownst to the hunter the blood from the chimp. The blood that had just entered the cut on his hand contained the virus that would later become the human immuno deficiency virus HIV. The hunter hauled his killed back home and continued his day to day life.
Over the next few years, the virus continued to integrate itself into the hunter's DNA and more viral particles were produced, but it wasn't for years that he felt any effects of the virus, and by the time he did, he had transmitted the virus to at least one other person. This bloody encounter between the hunter and the chimpanzee killed
is the true ground zero of the AIDS pandemic. We have no way of knowing exactly who this hunter was or exactly when or where it happened, but we have a pretty good guess, which is around nineteen oh eight in Central Africa.
I think that that's a lot earlier than most people think. Definitely, so I think that's an important thing. Like nineteen oh eight, that's a really long time ago. Highlight that double underline, double underline, and it was from most likely a hunter hunting bush meat who caught a chimpanzee yes, not anything else you might have in mind, right, not you, but like the royal you. Yeah.
The virus moved beyond this hunter, eventually making its way to a city where it continued to be transmitted through sexual contact, through reuse of dirty needles or some other root. And that's when it became HIV type one, the pandemic strain of the virus. And slowly, with one one person infecting one or two others, and those people infecting one or two more. In turn, the virus' distribution grew until
it had spread across the globe. Later testing of stored blood samples helped to flesh out a timeline for the spread of HIV. Ooh, I'm going to give you a brief rundown of this timeline to bring us up to speed to the early days of the AIDS pandemic in the US. Great Okay scientists guessed that HIV was circulating in Conshasa, which is the capital of the DRC Democratic Republic of the Congo by the early nineteen twenties. Wow,
circulating circulating in that baking population. Yes, And the first molecular evidence of HIV infection comes from nineteen fifty nine in a man from the DRC. The virus then probably arives in Haiti, which became later a big hot spot, in nineteen sixty six, and it probably arrived first in the US in nineteen sixty eight, though it could have been almost ten years earlier.
Wow.
So the first AIDS related death in the US was in nineteen sixty nine, and that was confirmed by later blood testing. And for that to be the case, that person had to have been infected, who was a young man, had to be infected much earlier, years earlier. So it's kind of it's a shaky ground there, but I would say nineteen sixty eight is at the latest estimate of when the virus arrived.
In the US the US populations.
Later testing of blood samples shows HIV infection in a Norwegian sailor and his family and a Danish physician in the mid to late nineteen seventies. Wow, all of whom died of AIDS related illnesses.
Wow.
By this time, the virus had firmly established itself in major cities in the US, in particular those that would later be identified as the epicenters of the AIDS crisis, New York City, San Francisco, LA In April nineteen eighty, San Francisco resident Ken Horn goes to his doctor complaining of dark purple spots on his skin, which his doctor diagnoses as Kaposi's sarcoma and as we learned earlier, super rare cancer, which is he's not of the right demographic or the typical demographic.
No, not at all. It's like men over the age of sixty six.
Yeah, and of mediterrane or Ashkenazi background.
Oh, I didn't know that part. That's interesting.
And his doctor doesn't know what to make of the diagnosis or of the unusual blood test results which show almost no functional immune system. Something was making ken Horn very sick, but he didn't know what.
So.
Yeah, as we heard earlier, there were a bunch of these other cases, and doctors were baffled. Why were these men in otherwise good health struggling to beat these normally harmless infections and losing. It would be many years and thousands more cases before there would be an answer. By the end of nineteen eighty, fifty five men had been diagnosed with some infection later recognized as characteristic of AIDS.
WOW.
Doctors were beginning to notice a pattern was destroying gay men's immune systems, leaving them open to opportunistic infection. Early nineteen eighty one, the CDC is alerted to the pandemic for the first time by Sandra Ford, a lab tech at the CDC who works to fill prescriptions and notices an unusual increase in requests for a drug used to treat a rare pneumonia.
I found our firms of stem crossover.
Here we go, Sandy Ford.
Andy Ford.
By May, rumors of a mysterious disease attacking and killing gay men are rampant throughout parts of the country. The first article in the world in the world about the disease is published on May eighteenth in The New York Native, which is a gay newspaper, titled Disease Rumors Largely Unfounded. Turns out they were founded. Yeah but yeah, so anyway.
Shortly after that, the Morbidity Immortality Weekly report describing those five the cluster of five cases that Aaron talked about in the biology section, appears and a task force is formed at the CDC. Their immediate goal is to identify what is causing this epidemic. So far, this disease has seemed to primarily hit gay males, in cities with large gay communities, the scientists think, okay, we're dealing with a
common exposure or an infectious agent. Poppers or nitrial inhalance was a contender in the non infectious origin camp, while a sexually transmitted virus new to humans was proposed by epidemiologist and task Force member Don Francis as the cause. Criminally understaffed and suffering from sweeping budget cuts, the CDC Task Force set about trying to isolate a common thread
that would reveal the origin of this epidemic. For those physicians an epidemiologist who were seeing the suffering and devastation caused by aid's first hand. There was no time for a leisurely comprehensive case control study. The house was already on fire. To any others, AIDS was an opportunity to get an article published in science, to patent a test for the disease, or a shot at a Nobel prize.
The CDC task for set out to conduct some shoe leather epidemiology, which, if you remember from the Collar episode, includes interviews with people suffering from the disease and physicians who had treated.
Them and all of their friends and family and contact contacts exactly, especially if you think that it might be something that's transmitted sexually, right, then that's really important to trace contacts exactly.
And two things emerged from these early interviews. One is that heterosexual intravenous drug users were also becoming sick with the disease. The other is that several of the gay men who were among the earliest recognized cases seemed to be linked to one another by their sexual history. Both of these things pointed to an infectious disease transmitted by
blood or bodily fluids, not an environmental exposure. I wasn't going to talk much about the infamous Patient zero, but I feel like I need to just to clear up a few things. Okay, First of all, did you know that the term patient zero comes from the AIDS crisis in the US?
No?
I didn't know that at all.
Yeah, if you've read anything about the early days of the AIDS epidemic, it's likely that you've stumbled upon the name Gaton Duga, or at least his description a handsome, charming gay flat attendant from Montreal, a frequenter of gay bath houses in the cities he visited, and in popular history,
responsible for the AIDS epidemic in the US. In the early days of the CDC Task Force, the epidemiologist took note of interviewees, social network friends, sexual contacts, etc. Gaton had registered on the CDC's radar because he popped up in a few of the networks they had mapped, and because he had been interviewed and provided a sizable list
of past contacts himself. His circle on the network map of sexual contacts was labeled patient oh, as in the letter oh for outside of California, as someone who did not live in the study site.
Huh.
This was later misread and the term patient zero became popularized in And the Band Played On, which was the incredible journalistic work by Randy Schiltz published in nineteen eighty seven.
Dude, yep, that is so interesting. Yeah, so they just meant this is a patient that is outside of California that is interacting with these patient circles, and now we use the term patient zero all the time.
He was absolutely well yes, so not only that, like in terms of the origin of the phrase patient zero, but he was demonized in this Oh yeah, I mean he was basically portrayed as a sociopath, like he.
Was like doing it on purpose or something.
Oh god, absolutely, I don't know anything about the validity of any of the claims that he went against public health advice or whatever. But regardless of that, later genetic analyzes would exonerate him as the US patient zero. The virus had been in the US, as we as we've learned, in New York and California, long before Katan was sexually active. Unfortunately, he would never know that the blame heaped on him was unfairly done. He died of AIDS in nineteen eighty four.
Oh, poor baby.
I just wanted to clear that up. Yeah, okay.
That's also a really interesting way that we have a term now, right, patient zero on a misreading, on a misreading, and then a further victimization. Wow, that is so interesting.
Yeah, I really wanted to include that. Yeah, okay, moving back to the timeline here. Yeah, let's it was clear to many of those studying it that this was an infectious agent transmitted by the exchange of bodily fluids. But where were the front page headlines? Where was the funding requested by the CDC task for worse months earlier?
Who was the president at this time?
Reagan?
Okay, we'll get that. Yeah, we'll get that. I just want to remind myself. Yeah yeah.
By the end of nineteen eighty one, one hundred and twenty one people in the US had died from the disease, with hundreds more infected, likely thousands. And yet among public health officials, among politicians, among those whose very job it is to protect the health and well being of the
people they served, all there was was deadly silence. Compare this silence and lack of funding to the outbreak of Legionnaire's disease in nineteen seventy six, which killed twenty nine and infected one hundred and eighty two people, mostly straight male veterans.
I was just gonna say, you have to say who it killed? Old white men. Yep, straight white old yeah men.
The funding records show that the life of a gay man with AIDS was worth one tenth of the life of a straight legionnaire to those making funding decisions.
Oh my god.
Because legionnaires was not a marginalized group, not a group that was repeatedly told they were sick, homosexuality as a diagnosis, as a pathological diagnosis was not removed from the diagnostic and statistical manual used by the American Psychological Association until nineteen seventy three, at which point it was replaced by quote sexual orientation disturbance.
Well, they just removed transgender very recently, right from the dism five or four or something. Yeah, yeah, it's disgusting.
Yeah, I mean so this means that if you were not heterosexual, you could be diagnosed by a medical professional as being sick.
Right.
This and the general discrimination by so many others led to the complete failure to provide adequate funding and resources quickly enough to slow down this building epidemic. In the early years of the AIDS crisis, the disease was referred to as alternatively gay cancer, gay pneumonia, or GRID for Gay related immune deficiency. This labeling of AIDS as unique
to gay men had profound consequences. First, as Susan Sontag points out in her essay AIDS and its metaphors, people seek meaning in disease and want to find out why me, Oh my god, I know. This labeling allowed people to answer because you're gay or because I'm gay, which perpetuated feelings of shame and.
Guilt, and also is just factually untrue, completely untrue. So that sucks for people who are infected who are not gay or you know.
I mean in this this is a form of victim blaming that were still not passed today. It also allowed home I'm aphobic, bigoted people to look at this as justified as divine punishment for what they viewed as immoral behavior. Many of these bigots, by the way, were politicians who would later actively lobby against funding for AIDS research. Jesse Helms, I'm looking at you, you piece of human garbage.
You your rage chilling, your rage inhaling right now.
Yeah, welcome to the past three weeks life. Finally, these labels made silence acceptable. After all, this was a disease hitting only a small group of people. It would probably burn itself out quickly. What's the point of throwing money away? That's not what I believe. That's what the politicians believe.
Yeah, learn to clear that up.
Yeah.
Yeah, Some, however, refuse to be silent. In January of nineteen eighty two, Larry Kramer, who was the author of the play The Normal Heart, which was just a few years ago, turned into an.
HBO movie Without really beautiful, fantastic.
You need to see it. It's oh my God, I cried a lot. So Larry Kramer, along with Paul Popham, formed the Gay Men's Health Crisis in New York City GMHC to raise money for AIDS awareness and research. The GMHC stepped in where no other public health organization had even attempted. This group of men, mostly gay, set up a crisis counseling hotline, raised awareness, recruited social workers, and provided legal aid and other forms of assistance to gay
men and their friends and family. Remind me what year this is, nineteen eighty.
Two, Okay, because we're in early years, early years. Yeah, No one knows what's causing AIDS, not at all. Yeah, okay.
Later their mission would extend to anyone affected by AIDS. The GMHC would continue to play a big role on HIV and AIDS advocacy throughout present day, and their early organized approach to raising awareness and providing support set an
example that many other organizations would later follow. In its first year, several internal debates raged at GMHC, one of them over whether or not to tell gay men to change their sexual behavior, which mirrored a debate among public health officials over the closing of gay bathhouses it was becoming clear that this disease, whatever it was, was sexually transmitted.
Telling gay men to stop having sex, or at least stop having unprotected sex, even if that message was delivered by another gay man, harkened back to a pre stonewall time when gay people were even more shunned than they were in the eighties. It was viewed by many as finger wagging, moralistic bs that served to only shame people and stall gay liberation, which had gained so much momentum since the sixties. Larry Kramer was on the losing side
of this argument. He wanted to tell people to stop having sex, and this disagreement, along with others, would lead to his departure from the group. The discussion at the public health level was the forced closure of bathhouses, which was supported by some epidemiologists on the CDC Task Force, but was obviously illegal, Plus the owners of the bathhouses didn't want to lose profit and have their institutions labeled
as centers of disease. Whether or not bathhouse closure or telling gay men to stop having unprotected sex was well intentioned, these suggestions replacing the burden of disease prevention not on the medical research community, but on the people who may become infected or already are infected. And that's just not the way to do things.
That's not the way we do public health, or not the way we should do public health right.
Shortly after the creation of the GMHC, AIDS gets its first mention in the Wall Street Journal February nineteen eighty two. Buried deep beyond the first page was the headline quote new often fatal illness and homosexuals turns up in women heterosexual males. If you read between the lines, that headline reads, you know, we've known about this disease killing gay people for a while, but now that it's also killing straight people,
we care enough to tell you about it. Yeah, And this exemplifies how mainstream news outlets framed HIV and AIDS well into the nineties and two thousands. Nineteen eighty two saw no slowing of AIDS diagnoses. Instead, epidemiologists and doctors were using the word exponential to describe its growth.
Yeah.
I was looking at a lot of numbers, and well through the nineties it was terrifying just how much not only diagnoses but deaths were increasing.
Oh.
Absolutely, Yeah, whatever was causing this disease. It had been spreading silently for years, and the worst was clearly yet to come.
Yep.
By the end of nineteen eighty two, the disease's name had been officially changed from GRID to AIDS, though GRID would continue to be used well into the nineties.
Wow.
Yeah, and the estimated number of people with AIDS in the US was around nine hundred. The last year that number would be in the triple digits.
In nineteen eighty two.
Nineteen eighty two.
Wow, and already in nineteen eighty two, nine hundred.
I know we're I know we're at the beginning of our history here so much. It's a long one in it.
Buckle up for three more hours.
I it is so important. I wanted to tell it. I wanted to tell all parts of it.
Good.
Act two Explosion nineteen eighty three to nineteen eighty seven. Nineteen eighty three would later be viewed as a turning point for AIDS research and AIDS awareness. But don't expect any great advancements or justice yet. The before is just that AIDS wasn't recognized as a problem by the general public, while the after was that it was suddenly making the news and popping up on scientist radar as the hottest new thing to research.
Oh god, don't we all know about that. You get funding for like a day, and then your funding is taken away. Uh huh, that's what the next new thing is.
Yeah.
By the time that the National Cancer Institute announced in April of nineteen eighty three that it was committed to finding the cause of the disease, one thousand, two hundred and ninety five Americans had contracted AIDS and four hundred and ninety two had died.
Wow.
Add in the extremely long latent period of the virus, which was still undiscovered at this point, and the estimates of current and future infections ran into the tens and hundreds of thousands. Contributing to the recognition of AIDS as a public health problem were reports of people with AIDS who seemed to have gotten it from a blood transfusion, people who tended to not belong to marginalized groups. Suddenly, to many Americans, this became a it could happen to you disease and a reason to care.
God, yeah, it's really humans man, horrible.
Uh huh.
The CDC had been wary of blood transfusion cases for several years and their fears were confirmed. Bringing their reports to the heads of the blood banks, the CDC was met with scorn and resistance. The chances of developing AIDS from infective blood banks was, according to one official, less than one in a million.
Oh my gosh, it's over ninety percent.
Yeah.
So, the infectivity of HIV from what we'll call maybe standard roots of transmission, sexual contact, intravenous drug use, or needlesticks is extremely low, like, well under one percent. Usually per contact it's only abou zero point three percent, but with blood transfusions it's over ninety percent. Like, I can't believe that people would be like, don't worry about it, it's fine.
Uh huh uh huh.
Oh my god.
Well, I think that that one in a million was referring to the number of bags of blood that were infected with HIV or whatever they Yeah, but that's crazy. I mean, it was an incredible, incredible underestimate.
They had no idea what they were dealing with at that time, so to just throw a number out there is so incredibly.
Well, let's let's find the motivation. Screening was too expensive?
Well, and what were they going to screen for? Well, actually, there.
Wasn't a test for the disease itself, but there still was a test for hepatitis B for screens of hepatitis, and it was found I think that those who weren't had AIDS or were diagnosed with AIDS, eighty eight percent of them also had that makes sense be so it was like one way to do it. Yeah, it was a proxy.
Yeah, interesting, Okay, And so.
A very small minority did screen, okay, but so many didn't. Yeah, And so many just waited until the cost of being sued by infected transfusion recipients outweighed the cost of testing. Oh my god, money, money money, Wow. And about that cause of agent thing, Yeah, let's get to that.
Let's talk about it.
It's nineteen eighty three. Where do we stand? Where do we Well, let me fill you in. Are you ready for your daily dose of toxic masculinity?
Oh my god, we need it every episode? Can we have a toxic masculinity jingle? Toxic masculinity time?
Love it?
I hate it? Actually? Yeah? Love your jingle? Hate toxic masculinity? Yeah?
Okay.
Well, here it comes in the form of old Bob Gallo, former researcher for the National Cancer institute still alive.
By the way, Wow Gallo.
When Gallo first heard about AIDS, and in particular the high rate of Caposi's sarcoma, immediately thought retrovirus. He happened to be right, and he would go to great length to show this. Although the vast majority of what I've talked about so far has taken place in the US, that does not mean that AIDS wasn't being diagnosed or
researched across the world, because it was. And one of those places is France, where a team of researchers had in May nineteen eighty three, published their discovery of a virus they called lav Bob Gallo had read the article heck. Bob Gallo had reviewed the article.
Heck.
And now Gallo was paralyzed with fear that he would get no credit for the discovery. He made angry, threatening calls to Don Francis at the CDC, pledging to withhold funds and refusing to send any specimens or antibodies because he feared that the CDC was collaborating with this French team behind his back. Oh my god, All this while
people were dying, and this narcissism slowed research considerably. Oh my god, rumors began circulating, probably started by Gallo himself, that the French specimens were contaminated and that the true virus could only come from Gallo's lab.
Oh my god, I hate this person.
Oh yeah.
So, even though there was a likely candidate for the virus that caused AIDS, testing or development of anti virals wouldn't start for another year, when Gallo would announce that he had discovered the cause of AIDS, a virus he called HTLV three.
Oh my god, I hate people who just care about themselves and their own How are you going to research cancer and diseases and this and not care about human being like lives.
Well, he's doing research for himself. Yeah, he's doing research for the people that the research should be done for.
No, not at all.
Yeah, it's a messed up system and messed up people.
Yea.
So, when Gallo finally got his discovery papers safely published, he included images of his virus, which looked, oddly enough, exactly like the French lav But the real revelation and scandal wouldn't come until nineteen eighty five. What at a press conference came the announcement that tests had revealed that when comparing Gallow's HTLV three and the French la v they were shown to be less than one percent different.
He stole their samples.
Yeah, oh my god, yeah he basically Gallo had simply re isolated the lav that the French virus that the French team had sent him on previous samples are a year before.
Okay, So not only is he a horrible person who cares only about himself, but he's not even fast and good at science because it takes him forever. Are you serious?
I'm one hundred percent serious.
That's infuriating.
Whether this was an intentional theft by Gallo or just an accidental bs BRO contamination remains unclear. No, I know, Oh I know, I know, I know deep in my heart of heart.
Yep.
A nineteen ninety one federal inquiry did find Gallo guilty of misconduct during this research.
Misconduct was I get you absolutely nothing.
I'll tell you.
Except a lot of hate on this podcast and kill you.
There is a little bit of justice, wait for it. The relationship between the French and US research teams had soured, and tensions continued to build, with a legal dispute over a patent for an antibody test.
I hate these people.
I know. It got so bad that in nineteen eighty five the US President Reagan and the French President Jacques Schiac had to settle this Oh my person. The result, Gallo and the French researchers would share co discoverer credit and the virus would be called HIV, which is how it got its name.
Wow.
This ugly chapter in AIDS research would cost Gallo the Nobel Prize in two thousand and eight, which was granted not to him but to the French discoverers of the viral cause of AIDS.
I don't want either of them to get it, to be honest, they both annoyed me.
Yeah.
Well, and while all this posturing and shameless self promotion was going on, people were dying by the thousands. Although the mid nineteen eighties saw increased awareness of AIDS and news reports, this wasn't accompanied by increased compassion or treatment. Quite the opposite. Violence toward gay men increased enormously and fear took hold. Hospitals refused to treat AIDS patients. Morge refused to handle the bodies of those who had succumb
to AIDS. Schools refused to admit children who were HIV positive, and the availability of an antibody test, while hugely valuable for an individual who could now keep an eye out for their own well being and for also for public health officials to try to get an idea of the number of people that were HIV positive, but on the other side of things, this test brought with it the fear that huge screening campaigns would be forced upon the populations that had been hardest hit by AIDS.
Right, and it's not like they're offering anything like, Okay, you know you're positive.
Now what now we can give you drugs for free to treat it. No, no, there was nothing. Yeah, countries were closing their borders to those who tested HIV positive, including the US.
Really, Oh yeah, I didn't know that. Oh my god.
So yeah, so there was a test, there was no treatment. Right when in nineteen eighty five, Rock Hudson announced to the world that he was suffering from AIDS, finally, in fury, aidingly, finally the world paid attention.
Who's Rock Hudson.
Who's a movie star? Yeah, So, all of a sudden, there were articles in the New York Times in Newsweek, all of a sudden people cared. Rock Hudson was handsome and all American movie star, good friends with Ronald and Nancy Reagan. Oh my god, yeah, iye roll and I do like I feel, I feel really bad of course that he controlled that he died of AIDS. He eventually did diet of AIDES in nineteen eighty five. It just is such a shame that it took that famous person for people to care about it.
It so often does, I mean still to this day?
I know?
And where was the president in all of this? What was he doing about the disease that was killing thousands of US citizens? Reagan would first publicly say the word AIDS in nineteen eighty five, Wow, And that was only in response to a reporter's question. It would be another two years before Reagan would deliver his first speech on the AIDS epidemic.
Are you serious?
Nineteen eighty seven, eighty seven. He had been president for seven years at this point.
That's disgusting. The entirety of the AIDS epidemic to that point was during his presidency.
Yes, at the time of his speech, which did not mention gay men as one of the hardest hit groups. Thirty six thousand and fifty eight Americans had been diagnosed with AIDS and twenty thousand, eight hundred and forty nine had died. Oh, those numbers don't include the global figures, which by now are climbing into the hundreds of thousands.
Yeah.
Act three outrage.
I'm already feeling that. So, my god.
Nineteen eighty seven to nonineteen ninety six. The year was nineteen eighty seven. The AIDS crisis in the US was in its seventh year. Scientists had identified the virus that caused the disease and even developed a test to determine the infection status, but with five hundred thousand cases of AIDS worldwide and still no reliable, effective treatment, the diagnosis of AIDS was basically a death sentence.
Yeah.
Years of delays in starting research on the disease and providing adequate funding in isolating its cause had a cascading effect on the development, testing, and approval of treatment to manage or cure the disease. The timeline for a pharmaceutical drug to be approved by the FDA is on average ten years.
Yeah that's still true. Yeah, still true today?
Yeah?
Oh was that's current numbers? Yeah, Yeah, that's an incredibly long time for people who are dying within a year of diagnosis. The later this process started, the more people died without ever receiving treatment. It's not exaggerating to say that tens or hundreds of thousands of lives were lost due to the apathy which with the US government responded to the AIDS crisis in its early years, and people
saw this and they would not stand for it. In March nineteen eighty seven, Larry Kramer, remember him from GMHC Ideal Gay Mens Health Crisis, helped to found act UP, an advocacy group focused on improving the lives of people with AIDS by direct actions aimed at changing policy, affecting the medical research pipeline, and helping to get treatment to those in needs. Act UP, by the way, stands for
Aid's Coalition to Unleash Power. The actions of act UP are the subject of the twenty twelve documentary How to Survive a Plague in the twenty sixteen book of the same name. If you haven't seen or read it, go do that immediately. If you have seen or read it, go do it again. We'll wait, Yeah, you really should. By nineteen eighty seven, one drug had been approved to treat AIDS. AZT in the US.
Yep.
Developed initially as an anti cancer drug.
I didn't know that. So that explains how they were able to get it on the market faster than they would have if it had already been developed. Yep.
Yeah, and so yeah. It had gone through clinical trials in nineteen eighty five to treat AIDS and shown some promise, although many patients experienced strong negative reactions like anemia, it was uncontrollable. Yeah.
Yeah.
When FDA approval went through in March of nineteen eighty seven, the pharmaceutical company that held the single patent on the drug, Burrows Welcome, announced that it would charge ten thousand dollars a year for the treatment, a price well out of reach of many.
People with AIDS, not just many, like literally everyone. Uh huh, that's absurd.
Yeah.
I hate money.
I hate I hate people.
Yeah, I hate people and money, people and money together. Like if you took the money away from the people then and then would be too much? Okay continue.
This announcement inspired one of the earliest actions of Act UP, a demonstration on Wall Street to protest this criminally high cost of AZT. Though it would take a couple of years and many more demonstrations, act UP would finally get Burrows Welcome to reduce that price to eight thousand dollars.
Oh my god.
Yeah, but still it was, I mean it was. That's amazing to me that this advocacy group actually made like made a change, made an impact on a pharmaceutical company.
I know.
But that's still just like so infuriating that they can just charge whatever the hell they want. I know.
Well, it's we've got glass half full, glass half there we go. We need both say, that's why we do this together. It is when one of us is up to the other, one is the way in the whole.
Oh.
True.
But even when AZT was more easily accessible, many people with aids couldn't take it. As I mentioned, So what other drugs were being researched? What else was out there?
Yeah?
Not very much, it turns out no. No, So a lot of the US research efforts seemed to be focused on honing AZT without developing new drugs. It was well, it was money making, right, and that's where the incentives were. Yeah, but there were some drugs. In their early infancy, act UP members read the latest medical journals to do their own research on the status of new drugs to treat HIV or AIDS, educating themselves reading textbooks about pharmacology, immunology, virology.
In the words of Derek Hotle, who's one of the act UP members, quote, in the absence of adequate healthcare, we have learned to become our own clinicians, researchers, lobbyists, drug smugglers, pharmacists. We have our own libraries, newspapers, drug stores, and laboratories. And that's exactly what they did.
Dude.
This is why I'm sorry to get off topic for a second, but I'm feeling the outrage, so I just need.
Too that we're in Act three outrage.
Yeah, I feel like this is such a beautiful example of why it is so important that we have diverse people in diverse roles, because then you wouldn't end up in this situation in the first place. If it wasn't all old white men in politics, research, medicine, everything at this point in time, I don't think you would have
seen the same situation, you know what I mean. Like, that's so, it's just because if everyone in your office in your lab is the same, then you all have the same viewpoint then no one is going, hey, but what about this thing, what about this new drug, or what about looking at it from this perspective?
And yes, multidisciplinary is such a word that's thrown around, you know, but it actually is can really make a big impact in terms of thinking reframing things in a way that you wouldn't have thought of earlier.
Well, and just having like like intersectional workplaces where you have multiple literal people of different colors and different creeds and different genders and everything, you know, And that's that's very true.
The problem though, that is that still remains is the fact that the money is all held primarily and the policies are all held primarily by old rich exactly men. Yeah, an agenda that is only self serving.
Yep, exactly totally And so yeah, one hundred percent on board with hating that.
Yeah, I mean we could go on forever talking about the injustice. Yeah and yeah, yep, okay, So so yeah, the members of act UP affected real measurable change in the turnaround time for experimental HIV or AIDS drugs.
That's awesome.
They made it like, let's get it to the market faster, yet's get these these experiments done faster. They also brought about the early the long long overdue approval of drugs used to treat AIDS related opportunistic infections in terms of preventatives, the development of educational materials about AIDS for people with
AIDS and their advocates. So a lot of distribution of materials and compiling it into packets that were accessible, that that could be read by people without a PhD In biophysics and molecular genetics.
So that the research is actually reaching the people they need.
Yea, what They're bridged the gap from primary research to communication so amazingly. It was really it's so.
Inspiring sycom at its finest.
Yeah.
Their demonstrations were unignorable, shutting down the FDA for a day during one awesome protest. In another, some members chained themselves to a balcony at the New York Stock Exchange.
Wow.
My personal favorite is when thag Tag Treatment Action Group, which had split off from act UP, put a giant inflatable condom over North Carolina Republican Senator Jesse Helms House what Yeah, Oh my god. Helms was one of the politicians actively campaigning on the Senate floor against federal funding for AIDS related research or treatment on the basis of moral outrage.
Oh my god, I hate him. How did they get an inflatable condom that big?
There's an entire story that actually, like Peter Staley tells the story in a blog. I can't remember the exact website, but he tells the story. It's in the documentary.
We'll link to it. We'll find that it's so great because that sounds amazing.
Yeah, yeah, so, Jesse Helms was an enormous piece of garbage. On the condom was written quote, a condom to stop unsafe politics. Helms is deadlier than a virus.
Oh my god. I love that.
And I don't think they got in trouble for it, which is the best part. I think they got like a parking ticket or something.
Oh that's so funny, so happy.
Perhaps the most recognizable demonstration, or the most the one that you may have heard of from the late eighties was the second National March on Washington for Lesbian and Gay Rights, an event which marked the first national media coverage of act UP and which revealed the AIDS quilt three and a half tons one nine hundred squares.
Oh my god.
At the time, it's since grown. Yeah, with each square representing someone who had died of AIDS. This march was attended by an estimated seven hundred and fifty thousand people. Wow, way more, way more than attended Trump's inauguration.
By the way, there's like seven people there, so oh so probably it could be as many as three times more than attended Trump's inauguration. Throughout the late eighties and early nineties, Act UP chapters started in cities across the US and continued to educate, demonstrate, and advocate. Meanwhile, the number of people with AIDS around the world was steeply climbing. By nineteen ninety one, it was at an estimated ten million, wow, ten million, ten.
Million people with AIDS, not just with HIV mm hmm wow, and.
An estimated one hundred thousand people in the US had died from AIDS since the start of the epidemic by nineteen ninety one, eleven years.
Oh my god.
It is during these years that we see the highest death tolls in the US. Yeah, with fifteen thousand, twenty twenty five thousand dead each year in.
The early nineties, Yeah, I saw some numbers es made it even higher than that, Like in the thirties and forty five.
Yeah, thirties and forties were around ninety four to ninety five. Ninety six, Yeah, Jesus. New experimental antivirals came onto the scene, sometimes cooked up at home, sometimes brought into the country. Buyers clubs are all over, providing people with experimental drugs, which, if they didn't offer a cure, may be offered hope. Real measurable qualified hope didn't come until nineteen ninety five,
the year the first proteas inhibitors were approved. People with AIDS who seemed to be nearing the end of their days rebounded after taking these drugs.
Wow.
Doctors called it the Lazarus effect. It was very dramatic. Within two years, death rates in the US and in much of Europe plummeted. But this miracle cure would come too late for so so many people, For over three hundred thousand dead in the US, for the millions dead worldwide. The members of act UP number in the thousands. But I want to mention the names of just some of those who were instrumental in the fight to improve the
lives of people with AIDS through act UP. David Barr, Spencer Cox, David France, jim Igo Grants, Frank Ruda, Larry Kramer, Iris Long, Mark Harrington, Bob Rafsky, Peter Staley. These people are heroes. Act for Persistence nineteen ninety seven to two thousand. The first few years in gay communities after the release of proteas inhibitors have been compared to coming up from the trenches only to realize that the world had no idea you were even fighting a war. Entire neighborhoods in
San Francisco and New York City were empty. People had watched as hundreds of their friends died. It wasn't uncommon to attend one or more funerals a week. These were young men, and so many of them died. PTSD and survivor's guilt were prevalent among those who had escaped the epidemic, But escape isn't really an appropriate word. There was no escape from the experience and it would stay with them forever.
As we heard in our first hand account, there was no parade, no march, no rally to signify the end of the AIDS crisis. In the US. Slowly, AIDS treatment centers closed their doors, demonstrations became more infrequent, although an HIV positive result no longer carried the death sentence it had before proteas inhibitors, AIDS diagnoses continued to c i'm
worldwide and in regions where treatment is completely unaffordable. In nineteen ninety seven, the worldwide death count is six point four million and current cases twenty million.
Wow.
Before getting in to current status of HIV and AIDS today, I want to say one more thing. At the end of each episode, we usually ask the question how scared to you need to be of X disease? But researching the history of HIV and AIDS made me realize that that's not the question we should have been asking all along.
Yeah.
Instead we should be asking what should scare you about this disease? For smallpox, I would have said that it was historical accounts of intentional infection or the future threat of bio warfare. For leprosy, it's the mistreatment of people with leprosy. In every case, the answer has something to do with the failings of humanity, and the story of AIDS is no different. There are towering villains in this story, the people that you would have thought you could have
trusted to do something about the disease. The thing that we should be most scared about in terms of HIV and AIDS is not the disease itself, but the response or lack of response of the government and public health agencies to this crisis, the discrimination and disregard for this disease because in the US it happened to pop up in a marginalized and long ostracized group of people. For every villain in this story, though, there is a hero or several heroes, those brave men and women who took
it upon themselves to organize, mobilize, and effect change. And while the history of AIDS is full of heartbreak and injustice, these heroes should give you hope and a belief that some people will have the courage to fight and prevail. And with that handing off to you, how.
On earth am I supposed to follow that? Oh God, that was beautifully written there.
Thanks, that was That was the first thing I wrote. Actually, it was really the end.
You have little cries in your eyes.
I do little cries of my ass.
Oh my god, I just like.
Mm okay, So, so what's happening today?
What's happening? I want to know about it?
Well, I could sit here and hit you with number after number, which is what I did to myself while I was researching this. Yeah, it was like table table infections, deaths, deaths.
Death It's it kind of detaches you real it does.
So I really appreciate what you said because that's it's very true, and it's yeah, sometimes it's there's two too many numbers when I'm just staring at them to deal with. So here's what I want to say. HIV AIDS is still a huge problem today. It's not a problem of the past. Like tens of thousands of people in the US are diagnosed with HIV and with AIDS every year, and thousands are still dying from it in the US
my gosh. But what I think is the most important thing to realize is that this risk still to this day, is not homogeneous. And if you thought that we learned from how marginalized groups were treated at the start of
the HIV AIDS eponemic, you're very much mistaken. Because while advocacy groups did a lot to raise awareness, and it's true that HIV AIDS research is very well funded in comparison to many other very inadequately funded diseases, and while CDC and who say things on their website, like rates of HIV infections are decreasing and aid's debts are decreasing,
it's not happening across the board. By far, the largest population at risk and getting diagnosed with HIV every year in the US are gay African American men, followed by gay Hispanic and Latino men. And for years, while the number of new diagnoses in other groups, especially in white gay men, were declining, they've been increasing in African American men and Latino men. And just finally, over the last year or two have these numbers seem to have stabilized.
Stabilized exactly. They're not decreasing by any rate. African Americans men and women represent only twelve percent of the US population, but accounted for forty four percent of HIV diagnoses last year.
Oh my god.
And to make it even worse, because why not, the most neglected group that has the worst out comes are transgender women. In the US, transgender women are diagnosed with HIV at rates three times higher than the general population.
Wow.
And a meta analysis in twenty thirteen that will link to estimated that infection prevalence and transgender women worldwide was seventeen percent and in high income countries, including the United States twenty two percent.
What.
Yeah, that's ridiculous. Two, it's ridiculous. It's unacceptable. And there is essentially no research being done on how to stop this from happening in these communities.
We haven't I mean, we haven't learned anything.
Yeah.
Yeah, And now we've talked a lot today about HIV AIDS in the US, but this is by no means a disease of the US. This is a global pandemic. The WHO currently estimates that there are over thirty six million people globally living with HIV wow, including two million children. And there were almost two million cases new cases diagnosed.
Last year, two million new cases.
And remember that these new cases don't necessarily represent new infections. They just mean that people are finally coming and seeking treatment or getting.
Tested, and so those are HIV.
Those are HIV cases, right. The saddest statistic is that only around fifty percent of adults and forty three percent of children that currently live with HIV are actually receiving any sort of antiretroviral therapy.
Why, like, why is that number fifty percent? Why is that number not one hundred percent? Oh right, Yeah, So I think accessibility.
Yeah, I think it's lack of access.
And this lack of access means oftentimes not just logistics but actual financial.
Yes, definitely, definitely financials. And the WHL also estimates that only about seventy percent of people living with HIV or seventy percent of people who are HIV positive actually know their status. And even today in twenty it's twenty eighteen. Now, Yeah, one in three people that present with HIV for the first time are presenting with advanced disease, which means they're
not getting tested early. They're waiting, you know, they don't know that they're infected until the disease has already progressed to either AIDS or you know, stage two or something like that. So wow.
And the thing about getting tested, which I didn't I didn't talk much about, but the term disease is so or diseased is so interesting. And if part of the fear of getting tested, and it's a completely legitimate fear, is that if, even if, if you get an HIV positive result, even though that's no longer the death sentence that it used to be, you are automatically lumped into this diseased category. Yeah, and if you and if you have no symptoms or seem perfect health, and.
If you are part of an already marginalized group, you just then further marginalize and potentially ostracize ourself are ostracized by that. Yeah, and yeah, it's it's horrible. And even though I mean, with treatment you can effectively reduce the risk of transmission to other people to very small and treatment is not perfect by any means. Drug resistance is very real, and treatment has serious side effects and complications, but it does greatly prolong your life expectancy and decreases
the risk of progressing to AIDS if you are HIV positive. So, I mean, yeah, it sucks that there's such such a huge stigma associated with it, where there might be many people out there who don't get tested because they don't want to know.
What's so frustrated is that, you know, public health officials or government officials complain about this lack of people testing themselves, but they're the ones who created the stigma. They're the ones who created these conditions which being tested is not a desirable thing to do, right, It's so frustrating. Yep, So is there anything? Is there any not silver lighting, but is there any sort of like, what about PREP.
Yeah, so let's talk about PREP. So PREP is pre exposure prophylaxis, which is it's when zero negative people, so HIV negative people are taking retrovirals to prevent infection with HIV. The good news is it's very effective.
Awesome.
This has actually been around for at least ten years. Trials started in two thousand and five, was the earliest that I saw. It wasn't licensed. Oral use of PREP, the trade name I think is Truevada or something wasn't licensed in the US until twenty twelve. But it's been around since long before that, and it's really effective. Dozens and dozens of clinical trials and cohort studies have shown that the use of these oral antiretrovirals can reduce risk
of infection by around ninety percent. That's more effective than condom use. Condoms are about eighty five percent effective when used correctly.
Wow.
Yeah, so that's great. There is also a gel that is an antiretroviral gel that is used. I don't think that it's licensed that I know of. Someone can correct me if I'm wrong in the US, but it is used in a lot of other countries that you can use either before or sometime during I think I would assume before sexual intercourse. And that is an anti retroviral gel, not a spermicidal gel. And that's also very effective, so it's not something that you have to take all the time.
Very cool.
Yeah, And so I want to point out that there have been a lot of criticisms of this drug PREP because people claim that since it can prevent HIV infection, it will then lead to an increase in the rates of other STDs because people are no longer using condoms essentially, And to that, I just want to say, yeah, like, that's the same that's the same BS argument that people try to use to say that women shouldn't have access to birth control options.
Uh huh.
Any option that is available that can prevent the spread of a disease as gnarly and devastating as HIV should be available to people who could benefit from it.
Yep.
Should people practice safe sex in general, da da da da. Of course, yeah, that would be great, but also they should use PREP if they can benefit from it. Yeah, I mean I was reading that. I was just it's so demeaning. It's insulting to assume that humans aren't capable of making our own decisions about our own healthcare and what is best for us. Uh uh, it's just plain wrong.
We're looking at you, conservatives, yet out of our bedrooms.
I also want to point out that this is a very expensive drug. I was looking for coupons for it. It's like sixteen hundred dollars for thirty tablets, So that's for a one month's supply. What it is covered by most health insurance.
That's awesome.
Yes, I didn't know that, and it seems like it is. It's not covered under Medicaid or Medicare or any other government insurance policy.
Government insurance, oh my mm hmm.
Which means guess what the most vulnerable sections of our populations aren't don't have access?
Exactly cool yet again, thumbs up, thumbs up government.
We give you something good and then we take it back. So it's not surprising to know that these are the same populations that we see having the highest rates of HIV and AIDS.
Right.
So, honestly, because of all this, I feel like we don't even have time to talk about the research that is being done on HIV. Sorry, there is a ton everything from better rapid diagnostic tools more effective anti retroviral therapies, and of course a vaccine.
That'd be awesome.
It would be great. There are tons of different strategies that people are exploring, and I'm sure there's a podcast episode out there somewhere about all of these different options, and maybe we can find it and link to it. But just to end it off with some numbers, yeah,
because I didn't do a lot of numbers. In total, from the beginning of the epidemic in nineteen eighty one or nineteen eighty until twenty sixteen, there have been an estimated one million, two hundred and thirty two thousand, three hundred and forty six people diagnosed with AIDS in the US.
Wow.
Cumulatively, six hundred and ninety two thousand and seven hundred and eighty nine people have died since the beginning of the epidemic in the US. In the US, yes, oh my god, millions and millions more worldwide. And that is the state of HIV today.
Well, i'd say that's a pretty sorry state.
Yep, I'd agree.
Okay, Well, there you have it, the biology, history, and current status of HIV and AIDS in the world.
Thanks for sticking with us.
Thank you. So much for listening.
We really really appreciate it.
Yeah.
I hope that you guys feel that you learned something new. I know I definitely did. I didn't know a lot about this history.
So yeah, and again, thank you so so much to the providers of our first hand accounts.
Brian, hellel and Frank. We really really appreciate it. It was wonderful talking to you and listeners. Hold your breath for next week because you're going to get to hear more of these stories. So should we talk about what our sources were?
Let's do it. I have a few books here. The first is The Chimp and the River by David Kwaman and the Band Played On by Randy Schiltz, How to Survive a Plague by David France I mentioned, And the final book I'll mention is called Aids and it's metaphors and it's really more of an essay by Susan Sontag.
Cool.
I've got honestly too many things to cite here, so we will post just because they're too long to read. Yeah.
You can find all of these books and articles on a Google doc list that we have a link to on our podbeam website.
Yeah, and We'll also make sure that that's posted on Facebook, so if you're interested in getting a list of everything that we've ever cited from all of our episodes, that'll be.
There as always. Thanks for listening, Yeah, thank you so much, we really like it. And thanks to Bloodmobile for providing the music in this episode. And finally, wash your hands.
Yeah, filthy animals and be kind of relationsh