The disease we let win

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0:39Now, I was looking for fun ways to tell you that Mint's offer of unlimited premium wireless for$15 a month is back. So I thought it would be fun if we made$15 bills. But it turns out that's very illegal. So there goes my big idea for the commercial. Give it a try at mintmobile.com slash switch. Upfront payment of$45 for three months,$90 for six months, or$180 for 12-month plan required. $15 per month equivalent. Taxes and fees extra. Initial plan term only. Greater than 50 gigabytes may slow when network is busy. See terms. I recently got on a video call with the writer of one of the best-selling books of all time.

1:15It's me. I'm the issue. I'm the problem. It's me. Can you hear me? Yes, I can hear you. All right, I got it. He was having some trouble with his microphone. The waveforms look good. All right, we're good. We're ready to go. John Green writes young adult fiction, YA. His main demographic is teens, hence his casual quoting of Taylor Swift lyrics. He's good at what he does. You inhabit the minds of young people. I mean, talk about unexplainable, right? Our show is called Unexplainable, about unanswered questions in science. And I mean, like, being a teen is very hard to explain. It's the ultimate unexplainable, man.

1:53Yeah, exactly. It really is. Like, it's so strange and overwhelming. And you're doing so many things for the first time. So, like, you're falling in love for the first time in a lot of cases. But you're also grappling with grief a lot of times for the first time. I know I was when I was a teenager. His books like mega bestseller The Fault in Our Stars have brought plenty of readers, even grownups like me, to tears. It's about a 16-year-old girl with terminal cancer and the friendship that she strikes up in a patient support group. It became a Hollywood movie, which had the best debut for a contemporary drama at the box office pretty much ever.

2:31Bollywood also made its own version. It struck a chord worldwide. When people romanticize being an adolescent, I'm always like, no, it sucked. It's very hard. It's intense. There's something wondrous about the intensity of it, but it is very difficult to go through those things for the first time. You're asking those big questions about meaning and the universe independent from your parents for the first time. And why is suffering unjustly distributed? Why is there evil in the world? You know, how have we built such wildly inequitable human systems? It's something I really admire about teenagers, actually, is the way that they grapple with those big questions in such a raw, honest, forthright way.

3:16But the reason I sat down to talk to John is not his teen fiction. I wanted to talk about his latest work. It's his first full-length nonfiction book, but it asks a lot of those same big questions, this time about one of the oldest and deadliest diseases in human history. The book is called Everything is Tuberculosis. What drew you to TB? Like, what's the origin story of this book? Well, I was in Sierra Leone in 2019 to learn about maternal mortality there. My wife and I have been working for many years on maternal and child health in impoverished communities. And we were asked to visit this TB hospital.

3:57And I was surprised to learn that there were TB hospitals. Like I was a little surprised to learn that tuberculosis was still a thing. I thought of tuberculosis as a disease that killed 19th century romantic poets, not as a present tense phenomenon. And so I went to this hospital and the moment we arrived, there was this kid, he looked to be about nine years old. He looked to be about the same age as my son. And he literally grabbed me by the shirt. And while all the doctors went off and started doing doctor things, this kid just walked me around this hospital. What is happening, guys? You are watching me for the first time.

4:30My name is Henry. Henry is also himself a YouTuber these days. Please make sure you subscribe and share. You're not a good YouTuber, Julia, unless you always take an occasion to tell someone to subscribe to your YouTube channel? John would know. He too is a prolific YouTuber. So go subscribe to Henry's YouTube channel. Henry Writer, YouTube, R-E-I-D-E-R. You can see that we are in the Lack Hospital. You can see the building. These are the patients over there. So we're walking all around this hospital, Henry and I, and I tell him that my son is named Henry, and he smiles. And I figured he must be like the kid of a doctor or a nurse or something because he seemed like the mayor of that place.

5:12Everywhere he would go, people would rub his head or shake his hand or give him a high five. And eventually we make our way back to the doctors, and they kind of laughingly shoo him away. And I say, whose kid is that? And they say, he's a patient. Henry wasn't nine years old like my son. He was 17. He was just so emaciated by childhood malnutrition and then by tuberculosis that he looked much younger. And I said, is he going to be OK? And one of the doctors looked at me like, what universe do you live in? Let's imagine you are in a situation one morning, the doctor wake up and tell you that the drugs are not working.

6:00How do you feel? One of the doctors said we're really concerned about him because even though he's currently responding to the second line drugs, we know that he's not responding well enough. And so we know that the infection is going to come back. So John Green started reading up on tuberculosis. And then I find out that tuberculosis is curable. Like we lose 1.3 million people a year to tuberculosis and it's curable. We know how to lose no one to tuberculosis. And so I came home from that trip just obsessed with tuberculosis because I wanted to understand what was wrong with the world that we were allowing a curable disease to kill over a million people every year.

6:45On today's edition of Unexplainable Book Club, John Green's book, Everything is Tuberculosis. How has one of the oldest diseases recorded in human history, one that's curable, How does it continue to kill the most people every year? Why? There are so many things about the disease that we just don't understand yet. Every time I meet with a tuberculosis researcher, I emerge with like three or four answers and like three or four hundred new questions. I'm Julia Longoria. This is Unexplainable.

7:24If you were to think about, I don't know, like the subjects of your YA novels, like, I wonder, do you think of TB as a character in your book? I do. I do think of TB as a character and like such a wily one, you know, a little trickster, always trying to evade our tools for fighting it. You know, the ancient Chinese said this is a disease that acupuncture won't work on. And so good luck. And Hippocrates, he said that you shouldn't even bother trying to treat tuberculosis because it'll make you look like a bad healer. You know, I mean, there was an awareness that it was just a very, very difficult disease to treat or cure.

8:06Like, I see the history of tuberculosis as this very long staircase that we've been walking up since we first discovered this disease. And for the vast majority of human history, we were essentially on the first step of that staircase. We didn't know anything about the disease. Yeah, what is tuberculosis in its basic form? Yeah, that's a great question. It's a bacterial illness, and it's really weird because the bacteria replicates very, very slowly for a bacteria because it has to build this complicated, fatty, very protective cell wall that makes it hard to penetrate and kill. And because TB kind of co-evolved with us, it's probably been part of the human story since before Homo sapiens were part of the human story.

8:55Because it's been around for so long, it has really developed an ability to coexist with humans and to kill us very slowly that makes it almost the perfect predator. Why have we not eradicated this disease? Like it's old, it's slow, like you say. You'd think we would have caught up to it by now if it's so slow moving, but it's like slow and steady has won the deadly race, I guess. Yeah, it's actually really advantageous that it's slow. It gives it much more time to spread. It gives it much more time to make us sick, makes us sick for longer. I think the average person with active tuberculosis spreads the disease to between 10 and 15 people per year of infection.

9:43And, like, sometimes people are sick for many years. There are good reasons why we haven't eradicated it, but then there are the terrible reasons. And yeah, I was really fascinated by your approach to answering this question of like the sort of slow motion catastrophe over the years. And you talk about the mythology around this disease and how that might have kept us from finding an answer. Yeah. Well, because tuberculosis is such a weird bacterial infection, it wasn't obviously contagious. In a lot of Northern Europe, especially, and in the United States in the 18th and 19th centuries, tuberculosis was mostly seen as an inherited condition, as a genetic disease.

10:27Because we didn't call it tuberculosis, right? Yeah, we called it consumption because it seemed to consume the body, so it was called consumption. And so it made sense to these folks that, like, if you inherited tuberculosis, you also inherited other traits, which is that you were also born with a tremendous sensitivity to the beauty and suffering and temporariness of everything in the world, right, which made you a good poet, for instance. When people had consumption, women especially were seen as very beautiful because it shrunk the body, made the body kind of frail, and this became a beauty standard.

11:04Women would apply rouge to their cheeks and paint to their lips to kind of mimic the fever that people with consumption would have, where their skin would become very pale and their cheeks and lips would become quite red. I remember reading lots of Edgar Allan Poe in college and sort of this image of the woman sort of like sallow-faced and ethereal. Big sunken eyes, that whole Tim Burton aesthetic of the very pale skin and the rosy cheeks. Those are the classic symptoms of consumption. And for men especially, but also to some extent for women, it was seen as a disease that made you brilliant, made you a wonderful poet, made you uniquely sensitive to the fate of the universe.

11:53Wild. When Keats was dying of tuberculosis, the great English poet John Keats, when he was dying, his buddy Percy Shelley wrote him a letter that said, well, you know, this consumption does tend to strike people who write great verses as you have done. And so it was understood as a disease that made you, created a creative flowering, even as it created this bodily wilting.

12:17So people were like, it was almost this, I don't know, like this desirable thing to have in a way? Yeah. Yeah. Yeah. And I mean, I write a lot in the book about why that was, because it is so weird, right? You certainly didn't see HIV romanticized. You certainly don't see tuberculosis romanticized these days. The argument in the book I make is that the reason it happened was that you couldn't stigmatize it away. That's usually what we do with illness, right? We stigmatize the sick, telling them that somehow their illness is their fault. But with TV, like one in three people were dying of tuberculosis in the United States and Northern Europe in the 18th and 19th centuries.

13:00It killed the richest man of the 19th century. It killed kings. It killed queens. It killed everybody. And so if you can't stigmatize the disease away because it strikes the rich as well as the poor, we romanticize it. You find a way to say that instead of saying these people are less than human, you find a way to say, well, maybe they're more than human. I absolutely think that the romanticization of TB slowed us down in terms of our understanding of the disease. It's almost like we didn't want to get rid of it deep down in our collective hearts. Right. And well, and certainly we thought like, well, this is just the world as it is and there's nothing that you can do about it.

13:36It's the providence of God, not the will of man that decides who gets consumption. And so it didn't become a disease that we could intervene in, at least in Northern Europe, until it became an infectious disease. And we understood that it was caused by a bacteria. And then everything changed.

13:57That's after the break.

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15:29Apple dropped some new upgraded computers this week, like a new Mac Studio for AI stuff, a new Mac Mini for AI stuff, with new faster chips also for AI stuff. Also this week on The Verge Cast, we give a dorm room a smart tech makeover. We get advice on what laptops are worth buying now that everything is more and more expensive. And we break down what happened with this week's big meta settlement about kids' safety. That's this week on The Vergecast, wherever you get your podcasts.

16:07Don't forget to be awesome. It's almost like there are two different diseases. There's the disease of consumption, which is an inherited condition that makes you beautiful and brilliant. And then there's the disease of tuberculosis, which is an infectious disease that is marked by filth and contamination. And so very soon after Robert Koch identified the infectious agent that causes tuberculosis, the disease started to be imagined very differently and understood very differently. It was seen as an illness of the marginalized, and increasingly it was also a racialized illness. So in the days of consumption, it was widely believed by many white doctors that colonized and indigenous and black people couldn't get tuberculosis, that they didn't get the disease at all.

16:57Because how could they get it? It was a disease of civilization. It was pale, the pale, sallow, ethereal, fashionable people. Exactly, exactly. To believe that tuberculosis or consumption could strike these, you know, colonized people would undermine the entire argument of colonialism itself. And then after we understood that it was infectious, that changed dramatically. And white supremacy began to hold that colonized and enslaved people, that there was something in their racial identity uniquely vulnerable to tuberculosis. Now, I will say that we made a lot more progress in this period. Between, you know, 1882 and 1940, the beginning of the antibiotic age, we made some significant progress.

17:46We developed a vaccine. It's not a very good vaccine, but it's a vaccine for tuberculosis. And then also we were using infection controls for the first time. So there's a poster that I reprint in the book that said, like, don't kiss babies. because it was believed that kissing babies could give them tuberculosis. Your kiss of affection means my infection, the posters said. And so, you know, we were coming up with some strategies, including the sanatorium. The rise of the sanatorium was in the 1890s into the 1940s. These places where people would be sent with consumption and would, you know, hopefully recover.

18:29through rest and proper nutrition, which are good treatments for tuberculosis, but also insufficient treatments. And it's a really interesting place to me because one scholar called it too hospital-like to be a prison and too prison-like to be a hospital. A lot of times kids would be put in sanatoria when they were three or four years old, and they would spend their entire childhood inside of this place. By the time they were adolescents, they'd really only known this very strange life of being forced to rest many hours a day, of being told they couldn't cry for fear of exciting emotions, being told they couldn't be visited by their parents for fear of experiencing extreme emotion, which was seen as detrimental to their health.

19:16And so they just grew up in really unusual circumstances, and yet they found a way to express their full humanness. They created newspapers. They created radio stations. They fell in love in difficult circumstances where they would lose their partner or their friend to tuberculosis.

19:36It's a really interesting place. I write about it in the book some, but I would love to return to it someday in fiction. But I don't think I'm, I'll be honest, I don't think I'm quite old enough to write historical fiction yet. I don't think I understand enough of history. Interesting. I like that idea that you'll, when you grow up, you can write some historical fiction. When I grow up, I'll write my sanatorium novel. And so, you know, we were coming up with some strategies, including the sanatorium, for removing people from the social order who had tuberculosis to slow the spread of the disease.

20:13And all of that worked because it's important to note that like we were investing a ton of money and resources into tuberculosis because rich people still got tuberculosis. It was really only when it became a disease of poverty that we stopped paying attention to it. And when would you say that happened? I would say that happened once we had a cure for TB. The cure is antibiotics, these drug compounds that target bacteria and kill them. We found the first antibiotic, which was called penicillin. We found penicillin, just casual. Yeah, yeah, the old penicillin. You've heard of him. And so the first patient to receive penicillin, whose daughter is still alive, that's how recent penicillin is.

21:01But with the arrival of penicillin, people got really excited, obviously, for good reason. So between 1945 and 1965, we developed seven or eight different classes of drugs that could fight TB. And people who'd been on their deathbeds in these sanatoria were miraculously cured by these new antibiotics. I mean, it was an absolute golden age of confronting the tuberculosis crisis. Unfortunately, we did not extend these tools to the world's poorest people and the world's most marginalized and vulnerable communities. And as a result, as a direct result, we ended up with an explosion of TB in those communities because nothing was being done to respond to the disease at all by colonial authorities.

21:50And just to understand how profound this was, between 1965, when we developed that seventh or eighth class of drugs to treat TB, and 2012, we developed no new drugs to treat tuberculosis. Wow. So it just fell off the concern list of humans in the rich world, largely because it stopped being a profitable disease to treat and cure. And as a result, we just lost decades in the fight against TB. Yeah. What is the chapter of the TB story that we're in right now? Unfortunately, this is a bad chapter. So the U.S. has long been the main funder of tuberculosis response in partnership with governments around the world.

22:35But we have made choices that result in far more people getting tuberculosis and far fewer people having access to treatment. And that's just the reality. You're talking about the cuts to USAID. Yeah, yeah. I mean, cuts to USAID, cuts to NIH, cuts to CDC. All of this has affected the ability of people to access their treatment. The problem is that a lot of the work that the U.S. was funding was the kind of background work. I'll give you one example, like the truck that took the drugs from the warehouse to the clinic. very early on in this crisis. A friend of mine sent me a picture of a warehouse in Kinshasa where drugs that we'd already paid for were just rotting because there was nobody to take them to the clinics and the patients where they're needed.

23:28You know, the most recent estimate I saw is that within five years, instead of 1.3 million people dying of tuberculosis, we're looking at a world where 2 million people die every year of tuberculosis. And the idea of like looking at that graph in the future and seeing it regress, seeing those millions of people die who we know don't need to die, it just infuriates me. If you think of the history of tuberculosis as that long staircase that, you know, starts out with Hippocrates saying, don't even bother treating TB and ends with, you know, walking up the staircase and finding a way to cure this, this ancient disease, we have fallen down the staircase.

24:09Like, ultimately, in the 21st century, you can't say that tuberculosis is caused by a bacteria. It's caused by us, because we know how to kill the bacteria. It's not easy to kill. You know, maybe a sinus infection takes seven to 10 days of antibiotics to cure. With TB, we're talking about four to six months of antibiotics taken every day in a certain order. And that's with the newest drug regimens. It's not easy to cure, but lots of diseases aren't easy to cure that we still cure.

24:38Welcome, welcome, welcome to my channel. My name is Henry. My friend Henry, in order to be cured from TB, he took medicine for years, every single day. In the course of his TB treatment, he took more than 20 ,000 pills. Since I entered the hospital, hope was lost. So Henry had a very complicated case of drug resistance. So we have these four drugs, all of which are from the 1940s, 50s, or 60s, that we use to treat most cases of tuberculosis. Some cases will be resistant to one or more of those drugs, and then it gets complicated. So the reason Henry developed drug resistance, we don't know for sure.

25:18It's another unexplained thing. Sometimes people have drug-resistant TB from the beginning, but in Henry's case, it most likely happened because he had TB when he was five or six years old, and he received some treatment, and then his treatment was interrupted because his dad took him off treatment and said, this is not a disease for the doctors, this is a disease for faith healers. And I write in the book about that decision because it, of course, troubles me. I wish he'd made a different decision. But at the same time, I have to see this from Henry's father's perspective and understand that, you know, Henry's father was living with a health care system that had never given him a reason to trust it.

25:57But it's very, very common when people see their treatment paused that they develop drug resistance. And that's probably most likely what happened to Henry. And as a result of that, when he got sick again and they came back and treated him with those same first line drugs that had been working fairly well before, suddenly they didn't work anymore.