Ep 12 HIV/AIDS: Apathy Will Kill You

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Listen to Boys and Girls starting February 19th on the I-H-R radio app, Apple Podcasts or wherever you get your podcasts. This is Special Agent Regal, Special Agent Bradley Hall. In 2018, the FBI took down a ring of spies working for China's Ministry of State Security, one of the most mysterious intelligence agencies in the world. The Sixth Bureau podcast is a story of the inner workings of the MSS, and how one man's ambition and mistakes opened its vault of secrets. Listen to the Sixth Bureau on the I-Hart Radio app, Apple Podcasts or wherever you get your podcasts. Hi, I'm Erin Welsh. And I'm Erin Almond 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 am 65, gay men. I live outside of Boston. I was about 27, I guess, or 28. When we first started to hear about it, I remember just think we were walking into work one morning. And this woman I worked with, she didn't read the newspaper and she said something about, hey, have you heard about this gay plague that's going on, this gay cancer? And 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 mushroom from there. So within, I would say about a year and a half to two years of reading about it in the paper. It is hit Boston like crazy. So I think in times of crisis, your true self really comes into being. And I've always brought to myself this 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 there only family. And so we took care of them, we cleaned 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, it's with the end. I mean, I can't tell you how many people have sat in and held their hand 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 70s, early 80s, 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 old together. We're all take care of each other as we get older. And they're all gone. The whole family that it created is just gone. I've got like maybe, I don't know, four or five friends left from that time period. And you know, I cherish them. But the larger community, it's just weird to realize that everybody that you love is gone. I even lost my partner to A's too. 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 motion picture business. At the time that I first learned about HIV, I was about, I guess, I was in my late 20s. I was about 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 chemical disease. How can you 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 quash the gay liberation revolution, whatever we were doing. And so, you know, we're easily just counted, 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 told down my pants with my legs shaking and I pointed at them and I said, look, I said, I've got the spots. They're K.S. I'm going to die right. He took a long breath. And he said, "Jui, finally, hello." He said, "What you have on your legs are bruises." But it had really kind of gotten to be enough for me because every time I had a cold and last and next week I'm running to the doctor every time I got out of the shower and get a quick 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, "Hello, we're so happy to give it the A-Test, but you have to be prepared for a result 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 A-Test." 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 1995, eight years after taking that test finally, finally the rain started to fall. I developed HIV-related non-Hogstensal lymphoma, which is lymphatic cancer. And there I was. I wasn't quite 40 years old. I was 39. I've never been in love. I've never been to Israel. I've never done so many of the things that I hope and wish that I would do. And yet, well, you march, you know? So that was 23 almost years ago. And still here, how does he do it? You know? What is the magic formula, the secret weapon that I possess? Well, it's drugs. Not the kind that we took back in day. Oh, no, no, no. These are HIV drugs. So when I ask myself, or 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 Stinglis, Missouri. I am a motivational speaker in light coach. What I could 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 different about how people contract HIV. When I was 11 months old, my father was a phobatymist at a hospital, decided to see your HIV, tainted blood and come over to a hospital that I have. I was staying at, I was admitted for my asthma attack. And he got my mother out of the room and then censoring and injecting me with the HIV virus, hoping I would die off and he wouldn't have to pay child support. Not only was it HIV, the bed it was also uncompatible blood. And so my vitro 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 24 hours later. I was stabilized and everything was okay. So 1996, one from being this playful, happy energetic, five year to this loaded, fever sick kid. And about months, my body began to break down and back to the started testing me for a numerous disease that even really runs down on just another country. In conclusion, they came to say, you know, I know he's not at risk for HIV, but let's test him for HIV. The results came back and I was diagnosed with full blood AIDS, given five months to live. My fetal count was at zero. They put me on 23 oral medications, three IV antibiotics and two injections daily. The majority of those were not available for a shift enough at times. But three months passed, five months passed. And as I stand before you today, wasn't supposed to see my sixth basis, but come next month, we celebrated my 27th 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 the show show, I'm a fear. I was always, I was left out of birthday party, show show event. My oldest sister, who has a different father, her father decided to take out her life because he didn't want to be associated with the HIV family. Two is even left out of birthday parties and show show event. I lost a lot of friends. I couldn't place forward some staff growing up, even though I'm a very athletic person. I did find my colleague 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 define me. And I started showing people that I was lobbying and Washington DC. You know, some of the ignorance went away, but still the ignorance is still consistent. But as she died in 18, 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-fisted chance to pass in on the diet. But a lot of people that stigma still live in real so where people don't want to go get tested or when people are contracted by it, they automatically think I'm screwed. I'm going to die. And that's not the truth. Like people who are living with HIV can be used to death for life. And people who hang out with HIV positive, people who are probably going to always remain HIV negative. (soft music) (laughs) - Yeah, wow, wow. Those stories were so incredibly touching. - Yeah. - Thank you again to Frank, to Hillel, and to Brian. - Yeah. - 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, Hillel, 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 drink, whatever you have, and sit back and get ready to learn. - Yeah, I was thinking about it and 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, we'll kill you, this American life edition, the crying episode. - Not really, but kind of. - Well, it's a very serious topic. 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 gonna discuss in it. So. - All right. Business is out of the way. - All right. Biology time. - All right. (upbeat music) (upbeat music) - So it's 1980, October, Los Angeles. - Okay. - You're a physician. - Okay. - A 33 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 side amygdala virus, 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 pneumocystis cariniae. - 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 1981. Cut back to April, 1981. Another patient presents to your hospital in LA with strikingly similar symptoms. Then you find out that in January and February of 1981 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 29 to 36, who were diagnosed with fungal pneumonia and fungal infections of the mouth as well. - A cluster. - A cluster. This is not normal. - No. - By 1982, the CDC had received reports of a cluster of 19 cases of PCP that's pneumocystis cariniae pneumonia and not the drug. - Not the drug. - And something else called caposi sarcoma, which is a viral induced cancer. Caposi sarcoma leaves these characteristic purple lesions on your skin and before this time, pretty much only ever affected much older men or severely immunocompromised 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 19 patients, 11 of them died. - Whoa. - At first, these case reports were almost exclusively popping up in gay men. However, they quickly started seeing cases, similar cases 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. - Mm-hmm. - What was happening was that each of these men and women and children were suffering from what we now know of as AIDS, acquired immune deficiency syndrome, which we now know means they were infected with HIV, human immunodeficiency 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 gonna talk about on this show. So we're gonna do a quick virology 101 course. - All right, okay. - Come on, it's been several years. - Great. - Let's do it. - All right, it's time, then you need to retrovirus. - Yeah, I need to retrovirus 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 yourselves machinery and force yourselves to start making protein. Normally RNA codes for protein. - Okay. - So these RNA viruses basically tell yourselves, "Biz and mech and more of me." And your cells are like, "Oh, okay, whatever. You're so smart 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 and can just swoop its way straight into your DNA. So it's a lot of, 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 101 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 101. All right. Okay. So there are two main subtypes of HIV. HIV1 and HIV2. All right. HIV1 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. HIV2 is pretty much confined to West Africa. Okay. So 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. Yeah. 13 days. Exactly. Well, HIV makes 100 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 overwhelming. 100 billion. Yeah. With a B every day. Every day and because it's an RNA virus and a retro virus 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 AIDS? That's the real question. Yeah. Tell me about it. I just 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. You can't get it by kissing, touching, high-fiving, hugging, 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 CD4 counts in relation to HIV? Yes. Well, CD4 cells are a type of T cell, which is a lymphocyte or a white blood cell. CD4 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. But basically, those are proteins that help in your immune response. So CD4 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 CD4 numbers. Exactly. So when people talk about their CD4 cell counts, they're literally talking about how many CD4 T cells they have left in their body that haven't been destroyed. But the mechanism of CD4 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 replicates in your CD4 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, um, you're making meatballs and the whole bowl of meat is your CD4 cell and you take one meatball out at a time. Like that's HIV. 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 animation. With them budding off, right? Yeah. Like little viral particles budding 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, 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 cytokines 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 10 days, the patient usually has a really high viralemia. 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 28 days after exposure to HIV, your body has controlled or suppressed the initial infection. And viralemia 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 CD4T cells, making it impossible for your immune system to fight off opportunistic infection. This can take anywhere from three to 20 years. But on average, about 50% of people who are infected with HIV and are untreated will progress to AIDS within 10 years. 10 years. Yeah. So the incubation period for HIV itself, the virus, is only about seven to 10 days. But the incubation period for AIDS is about 10 years. And one thing that's really important is that the infectivity of HIV really depends on your viralemia. 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 AIDS stage, your viralemia 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 CD4T 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 80s. 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, Darian. 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. A la American life. Right. I said so. From its earliest beginnings in Central Africa to its eruption in the US in the 80s and 90s, into 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. 1908 to 1982. Let's take a trip in space and time. Back to Central Africa in the early 1900s 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 chim, but in the process of butchering the chim, the hunter sliced his own hand and some of the chim's blood flowed into the fresh wound. Unbeknownst to the hunter, the blood from the chim. The blood that had just entered the cut on his hand contained the virus that would later become the human immunodeficiency 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 he 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 1908. 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 1908, that's a really long time ago. Highlight that double underline. Double underline and it was from most likely a hunter hunting bushmeat who caught a chimpanzee. Yes. Not anything else you might have in mind. Right. Not you, but like the royal you. The rea. 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 route. And that's when it became HIV type one, the pandemic strain of the virus. And slowly with one person infecting one or two others and those people infecting one or two more in turn, the virus's 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. I'm going to give you a brief run down in this timeline to bring us up to speed to the early days of the AIDS pandemic in the US. Great. Okay. Scientists guess that HIV was circulating in Kanchasa, which is the capital of the DRC, Democratic Republic of the Congo, by the early 1920s. Wow. Circulating. Circulating. In that big city. In the population. Yes. And the first molecular evidence of HIV infection comes from 1959 in a man from the DRC. The virus then probably arrives in Haiti, which became a later a big hot spot in 1966. Okay. And it probably arrived first in the US in 1968, though it could have been almost 10 years earlier. Wow. So the first AIDS related death in the US was in 1969. And that was confirmed by later blood testing. Okay. And for that to be the case, that person had to have been infected, who was a young, a young man had to be infected. Not earlier. Not earlier. Years earlier. So it's kind of a shaky ground there. But I would say 1968 is at the latest estimate of when the virus arrived in the US. In 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 1970s. 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. Yep. In April 1980, San Francisco resident Ken Horn goes to his doctor, complaining of dark purple spots on his skin, which his doctor diagnoses as Kaposi Sarcoma. Yep. And as we learned earlier, a super rare cancer, which is, and he's not of the, the right demographic, or the typical demographic. No, not at all. It's like men over the age of 66. Yeah. And of Mediterranean or not Ashkenazi background. Oh, I didn't know that part. Yeah. 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 1980, 55 men had been diagnosed with some infection later recognized as characteristic of AIDS. Wow. Doctors were beginning to notice a pattern. Something was destroying gay men's immune systems, leaving them open to opportunistic infection. Early 1981, 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 use to treat a rare pneumonia. I found our fums of stem crossover. There we go. Sandy Ford. Sandy 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 18th 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 and mortality weekly report describing those five, the cluster of five cases that Aaron talked about in the biology section, right? Yeah. 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. Yes. Poppers or nitrile and halense 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. Wow. Creminally 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 in epidemiologists who were seeing the suffering and devastation caused by AIDS firsthand, there was no time for a leisurely comprehensive case control study. The house was already on fire. But to so many 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 force set out to conduct some shoe leather epidemiology, which if you remember from the cholera episode, includes interviews with people suffering from the disease and physicians who had treated them. And all of their friends and family and contacts. Close 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 seem 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, Gatam, Duga, or at least his description. A handsome, charming gay, flat attendant from Montreal. A frequenter of gay bath houses in the CDC 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 interviewies, social network, friends, sexual contacts, etc. Gatam 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 sizeable list of past contacts himself. His circle on the network map of sexual contacts was labeled patient O, as in the letter O, 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 Schultz published in 1987. 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, yeah. So not only that, like as term in terms of the origin, yeah, of the phrase patient zero, but he was demonized in this book. 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 analyses would exonerate him as the US patient zero. Yeah. Virus had been in the US as we as we've learned in New York and California long before Katan was sexually active. Wow. Unfortunately, he would never know that the blame he'd done him was unfairly done. Oh, yeah. He died of AIDS in 1984. 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. 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 Force months earlier? Yeah. Who was the president at this time? Reagan. Okay. Just wanted to look at that. Yeah. We'll get there. Just wanted to remind myself. Yeah. Hmm, by the end of 1981, 121 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 Legionnaires' disease in 1976, which killed 29 and infected 182 people, mostly straight male veterans. I was just going to say you have to say who it killed, old white men, straight white old 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 1973. I'm going to throw up. At which point it was replaced by "sexual orientation disturbance." Well, they just removed transgender very recently. Right from the DSM 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. AIDS 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 in its Metaphores," 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 we're still not passed today. It also allowed homophobic, 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're rage-chilling. You're rage-enhaling right now. Welcome to the past three weeks in my life. Yeah. 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, let it clear that up. Yeah. But, however, refused to be silent. In January of 1982, 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 and 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? 1982. Okay. Because we're in early years still. Early years, yeah. No one knows what's causing AIDS. Not at all. Yeah. Okay. So their mission would extend to anyone affected by AIDS. The GMHC would continue to play a big role in 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 bath houses. 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-stone wall time when gay people were even more shunned than they were in the 80s. 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 60s. 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 bath houses, which was supported by some epidemiologists on the CDC task force, but was obviously illegal. Plus, the owners of the bath houses didn't want to lose profit and have their institutions labeled as centers of disease. Whether or not bath house closure or telling gay men to stop having unprotected sex was well-intentioned, these suggestions were placing 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. It'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 1982, buried deep beyond the first page was the headline, quote, "New, often fatal illness in 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 90s and 2000s. 1982 saw no slowing of AIDS diagnoses. Instead, epidemiologists and doctors were using the word "exponential" to describe its growth. Yeah. And looking at a lot of numbers and well through the 90s, 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 1982, the disease's name had been officially changed from grid to AIDS, though grid would continue to be used well into the 90s. Wow. Yeah. And the estimated number of people with AIDS in the US was around 900. The last year, that number would be in the triple digits. In 1982. 1982. Wow. And already in 1982, it was 900. I know. I know we're at the beginning of the history here. I know. I'm so touched. It's a long one. And 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 2. Explosion. 1983 to 1987. 1983 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. And then the next thing is that the next thing is that the National Cancer Institute announced in April of 1983 that it was committed to finding the cause of the disease, 1,295 Americans had contracted AIDS and 492 had died. 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 seem 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 in a reason to care. God. Yeah. It's really human's man. Horrible. 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 infected blood banks was according to one official less than one in a million. - Oh my gosh, it's over 90%. - Yeah. - So the infectivity of HIV from what we'll call maybe standard roots of transmission, sexual contact, intravenous drug use, or needle sticks is extremely low. Like well under 1%, usually per contact, it's only about 0.3%. But with blood transfusions, it's over 90%. 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 - You know the blood they think. - That were infected with HIV or whatever they'd, yeah, but that's not crazy. - Oh, 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 find the motivation. Scraining was too expensive. - Well, and what were they gonna screen for? - Well, actually, there wasn't a test for the disease itself, but there still was a test for hepatitis B for screenings of hepatitis B. And it was found, I think, that those who weren't, had AIDS or were diagnosed with AIDS, 88% of them also had a disease. 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 1983. Where do we stand? - We're do we. - Well, let me fill you in. Are you ready for your daily dose of toxic masculine? - Oh my God. - We need it every episode. Can we have a toxic masculinity jingle? ♪ Tuxic masculine anytime ♪ - Love it. - I hate it. - I actually have, yeah. - Love your jingle. Hate toxic masculinity. - Okay. Well, here it comes. - Yes. - In the form of old Bob Gallo. (laughing) Former researcher for the National Cancer Institute. Still alive, by the way. - Wow. Gallo. - Maybe he'll listen. - He'll listen. - When Gallo first heard about AIDS, and in particular the high rate of Kaposi Sarcoma, he 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 1983 published their discovery of a virus they called L.A.V. Bob Gallo had read the article. Heck, Bob Gallo had reviewed the article. - Hmm. (laughing) Heck. - And now Gallo is 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 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 antivirals wouldn't start for another year when Gallo would announce that he had discovered the cause of AIDS, a virus he called HTLV3. - Oh my God. I hate people who just care about themselves and their own. How are you gonna research cancer and diseases and this and not care about human beings like lives? - Well, he's doing research for himself. - Yeah, clearly. - He's not 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. - Yeah, dude. 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 in Scandal wouldn't come until 1985. - What? - At a press conference came the announcement that tests had revealed that when comparing Gallos, HTLV3 and the French LAV, they were shown to be less than 1% different. - Oh, he stole their samples. - Yeah. - Oh my God. - Yeah. - He basically, Gallo had simply re-isolated the LAV, the French virus, that the French team had sent him from previous samples 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. - No. - 'Cause it takes him forever. Are you serious? - I'm 100% serious. - It's infuriating. - Whether this was an intentional theft by Gallo or just an accidental BS, bro. - Contamination remains unclear. - No, but-- - Oh, I know. I know, I know deep in my heart of heart. - Yep. - A 1991 federal inquiry did find Gallo guilty of misconduct during this research. - Misconduct was I get you absolutely nothing. - I'll tell you what. - Except a lot of hate on this podcast will 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 1985, the US president Reagan and the French president, Jacques Cheroc, had to settle this. - Oh my god. - Person. The result, Gallo and the French researchers would share co-discover a 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 2008, which was granted not to him, but to the French discovers of the viral cause of AIDS. - Oh my god. - I don't want either of them to get it to be honest. They both annoyed me. - Yeah, well, whatever. And while all this posturing and shameless self promotion was going on, people were dying by the thousands. Although the mid 1980s 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, morgues refused to handle the bodies of those who had succumbed 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 wellbeing 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. - 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. - 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. - And when in 1985, Rock Hudson announced to the world that he was suffering from AIDS, finally, infuriatingly, finally, the world paid attention. - Who's Rock Hudson? - He'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, I roll. And I do, I feel really bad, of course, that he died of AIDS. He eventually did die of AIDS in 1985. It just is such a shame that it took that a 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 1985. - 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? - 1987. - '80. 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. 36,000 and 58 Americans had been diagnosed with AIDS and 20,849 had died. Oh my God. Members don't include the global figures, which by now we're climbing into the hundreds of thousands. Yeah. Act three, outrage. I'm already feeling that, so my God. 1987 to 1996. The year was 1987. 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 500,000 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 10 years. Yeah, that's still true. Yeah, still true today. Yeah. That's current numbers. Oh, 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 1987, Larry Kramer, remember him from GMHC? I do. Game and South 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 AIDS Coalition to Unleash Power. The actions of act up are the subject of the 2012 documentary, How to Survive a Plague, and the 2016 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. (laughs) We'll wait. Yeah. You really should. By 1987, 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 1985, two treat AIDS, and shown some promise, although many patients experienced strong negative reactions like anemia. It was narrowly uncontrollable, yeah. Yeah. When FDA approval went through in March of 1987, the pharmaceutical company that held the single patent on the drug, Burrows Welcome, announced that it would charge $10,000 a year for the treatment. A price well out of reach for many people with AIDS. Not just many like literally everyone. That's absurd. Yeah. I hate money. I hate people. Yeah. I hate people and money. People and money together. Like if you took the money away from the people, then there 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 $8,000. Oh my God. Yeah. But still, it was, I mean, it was, that's amazing to me that this advocacy group actually 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. Well, we've got glass half full, glass half empty. There we go. We need both savings. Why would this together? Yeah, that is. When one of us is up, the other one is all the way in the hole. Oh, true. But even when AZT was more easily accessible, many people with AIDS couldn't take it, as I mentioned. So what are the drugs we're being researched? What else was out there? Yeah. Not very much. It turns out. Oh no. So a lot of the US research efforts seem to be focused on honing AZT without developing new drugs. It was absolutely-- Well, it was money-making, right? And what's where the incentives were? Yeah. But there were some drugs in their early infancy. Actup 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 Hodel, who's one of the ACT-UP members, quote, "In the absence of adequate health care, 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 this. Yeah. But I'm feeling the outrage. So I just need to-- We're in ACT-3 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? It's just because if everyone in your office, in your lab, is the same, then you all have the same viewpoint than no one is going, "Hey, but what about this thing? What about this new drug?" Or what about looking at it from this perspective? Anyways, multi-disciplinary is such a word that's thrown around. But it actually can really make a big impact in terms of thinking reframing things in a way that you wouldn't have thought of earlier. Well, I'm just having like intersectional workplaces, where you have multiple literal people of different colors and different creeds and different genders and everything. And that's very true. The problem, though, that still remains is the fact that the money is all held primarily and the policies are all held primarily by old, rich, white men with a agenda that is only self-serving. Yep, exactly, totally. So yeah, 100% on board with hating that. I mean, we could go on forever talking about the injustice. Yeah. And yeah. Yep. OK. So yeah, the members of ACTUP 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. Yeah. 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 preventative-- That's great. --that's for an event. 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 could be read by people without a PhD in biophysics and molecular genetics and-- So that the research is actually reaching the people that you need. Yeah. What they're-- Yeah. --breached the gap from primary research to communication so amazingly. It was really-- it's so inspiring to me. So I come at its finest. Yeah. Their demonstrations were unignorable, shutting down the FDA for a day during one awesome protest. In another, some members chain themselves to a balcony at the New York Stock Exchange. My personal favorite is when TAG 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? Well, there's an entire story that actually-- Peter Staley tells the story in a blog. I can't remember the exact website. Oh, man. He tells the story. It's in the documentary. We'll link to it. We'll find it. Oh, my God. It's so great. Because that sounds amazing. Yeah, yeah, so Jesse Holmes was an enormous piece of garbage. Yeah 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 I 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 80s 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 1900 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 750,000 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. Oh my god. Then attended Trump's inauguration Throughout the late 80s and early 90s 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 1991. It was at an estimated 10 million 10 million 10 million people with AIDS not just with HIV Mm-hmm And an estimated 100,000 people in the US had died from AIDS since the start of the epidemic by 91 11 years My god, it is during these years that we see the highest death tolls in the US. Yeah with 15,000 20,000 25,000 dead each year in the early 90s Yeah, I saw some numbers estimated even higher than that like in the 30s and 40s Yeah 30s and 40s were around 94 to 95 96. Yeah 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 1995 the year the first protease 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. Wow 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 300,000 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 bar Spencer Cox David France Jim I go Garant's Frank Ruta Larry Kramer Iris Long Mark Harrington Bob Raffsky Peter Staley these people are heroes Act for persistence 1997 to 2000 The first few years in gay communities after the release of protease 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 in 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 survivors 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 Instrations became more infrequent although an HIV positive result no longer carried the death sentence It had before protease inhibitors AIDS diagnoses continued to climb worldwide and in regions where treatment is completely unaffordable In 1997 the worldwide death count is 6.4 million and current cases 20 million Before getting into 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 do you need to be of X disease? Yeah 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 Yeah 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 an 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 an 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? God That was beautifully written there Oh thanks That was the first thing I wrote actually It was really at the end You have little cries in your eyes I do a little cries of eyes Oh my god, I just. Okay, so. So what's happening today? What's happening? I wanna 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, deaths It kind of. detaches you It does It does, it does So I really appreciate what you said because that's. it's very true and it's Yeah, sometimes there's too many numbers when I'm just staring at them to deal with so Here's what I wanna 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 Oh my gosh But what I think is the most important thing to realize is that this risk still to this day is not homogenous And if you thought that we learned from how marginalized groups were treated at the start of the HIV AIDS epidemic 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 AIDS deaths are decreasing It's not happening across the board Mm-hmm 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 12% of the US population but accounted for 44% of HIV diagnoses last year Oh my god And to make it even worse, because why not? Oh yeah The most neglected group that has the worst outcomes 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 2013 that will link to estimated that infection prevalence in transgender women worldwide was 17% and in high income countries including the United States, 22% what's yeah that's ridiculous. 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 36 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 50% of adults and 43% of children that currently live with HIV are actually receiving any sort of anti-vertroviral therapy. Why is that number 50% why is that number not 100% oh right yes so I think accessibility yes 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 WHO also estimates that only about 70% of people living with HIV or 70% of people who are HIV positive actually know their status. And even today in 2018 now 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 disease is so interesting and if part of the the fear of getting tested and it's a completely legitimate fear is that if even 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 are and if you have no symptoms or seem perfectly healthy. And if you are part of an already marginalized group you just then further marginalized and potentially ostracize or are ostracized by that. 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. So frustrating is that you know public health officials or government officials complain about this lack of people testing themselves but they are the ones who created the stigma. They're the ones who created these these conditions. Yeah. Which being tested is is not a desirable thing to do. Right. It's so frustrating. Yep. So is there anything to do? 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. This has actually been around for at least 10 years. It was really started in 2005 was the earliest that I saw. It wasn't licensed oral use of prep. The trade name I think is true Vada or something. Wasn't licensed in the US until 2012 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 90%. That's more effective than condom use. Condoms are about 85% effective when used correctly. Wow. Yeah. So that's great. Yeah. 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. It's an anti-retroviral gel, not a sperm acetyl 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, fuck you. 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. 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. Could people practice safe sex in general? 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 and 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. It's just plain wrong. We're looking at you, conservatives. Get 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 $1,600 for 30 tablets. So that's for a one month 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 policies. Most government insurance? Oh my. Which means guess what? The most vulnerable sections of our populations aren't. Don't have access. Exactly. Oh, 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. Sorry. There is a ton. Everything from better rapid diagnostic tools, more effective anti-retroviral therapies, and of course, a vaccine. That would 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 1981 or 1980, until 2016, there have been an estimated 1,232,346 people diagnosed with AIDS in the US. Wow. Cumulatively, 692,789 people have died since the beginning of the epidemic. In the US. So that's in the US. Yes. Oh my God. Millions and millions more worldwide. And that is a 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. And again, thank you so, so much to the providers of our first hand accounts. Brian, Hillel, 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 Schultz. How to survive a plague by David France. I mentioned. And the final book on mention is called AIDS and its metaphors and it's really more of an essay by Susan Sontag. Cool. I've got But honestly, too many things to cite here. So we will post just because they're too long to read. You can find all of these books and articles on a Google Doc list that we have a link to on our Podbean 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. [MUSIC PLAYING] 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, fill the animals and be kind. [MUSIC PLAYING] What is something you've had to unlearn about love? That it's earned. Whether you're in a relationship, casually dating, or proudly single, it's a great time to reflect on yourself and what you want. I'm Hope Woodard, host of the Boyz Over podcast. And each week, we're looking at love from every angle. Listen to Boyz Over. Only I, Heart Radio app, Apple podcasts, or wherever you get your podcasts. Then she says, have you seen a photo of my son? And I'm like, who is this person? Welcome to the Boys and Girls podcast. A ranged marriage is basically a reality show. And you're auditioning for your soulmate. And who's judging? Only your entire family. I sacrificed myself to this ancient tradition, hoping to find love the right way. And instead, I found chaos, comedy, and a lot of cringe. Listen to Boyz and Girls starting February 19th on the I Heart Radio app, Apple Podcast, or wherever you get your podcasts. Listen to the Sixth Bureau on the I Heart Radio app, Apple Podcasts, or wherever you get your podcasts.