Everything Is Tuberculosis

0:00This is 99 % Invisible. I'm Roman Mars. You may know John Green as a YouTuber, a podcaster, or a mega bestselling young adult novelist. But John's writing goes way beyond novels. His latest book is a nonfiction deep dive into one of the oldest and deadliest threats to humankind. You know, if you told me six years ago that my next book would be about tuberculosis, I would have been duly surprised. I did not think of tuberculosis as being really much of anything. I thought it was a disease of the past, like a disease that killed the guy in Red Dead Redemption 2, not a present tense phenomenon. Tuberculosis is in fact the single most lethal infectious disease in the history of the world.

0:47It's been infecting and killing humans for millennia. But what makes the story of TB so maddening and what drew John to the topic is that the disease is still killing over a million people a year, despite the fact that we already have a cure. John's book is called Everything is Tuberculosis, and in it, he describes how foreign policy and corporate greed make TB so hard to eliminate. He also explains the history of tuberculosis and all the unexpected and fascinating ways TB has shaped our world. I really love this book. It is both heartbreaking and triumphant. It is full of fun facts and sober realities.

1:23And I really just want to have John on the show to talk about all the stuff he learned while writing it. So let's start at the very basics. I realized when I was reading this, I didn't have a full grasp of what tuberculosis actually was. So could you tell me about it as a sort of biological entity, what it does to you? How does it spread? Yeah. So it's a bacterial illness, but it's a weird bacteria. It's a bacteria with a really thick cell wall that takes a long time to make. And so relative to other bacteria, it grows very slowly. Like I think in a lab environment, it doubles every day, whereas something like E.

2:00coli will double every 20 minutes. Wow. So it's an unusual bacteria, but it also, that thick cell wall makes it hard for infection fighting cells to penetrate. And so usually what actually happens is that a bunch of white blood cells will surround some bacteria and kind of wall it off in what's called a tubercle, which is why we have the word tuberculosis. I think it's technically pronounced tubercle, but I don't like pronouncing it that way. It seems wrong. But this weirdness is one of the reasons why it's kind of both persisted and sort of inveigled its way into culture over thousands and thousands of years.

2:41And I'm really fascinated by this. And I'm also fascinated by the idea of like how it was, you know, before people knew of it as a bacteria, how it was conceptualized. Could you talk about some of the things that you found about how ancient civilizations treated this odd bacterium? Sure. So we've had tuberculosis or diseases very similar to it for probably all of human history and even further back in the story of people, back to Homo erectus. And so we've had a long time to imagine tuberculosis, and over the years we've imagined it lots of different ways. Some people saw it as a contagious illness from the beginning in ancient China and ancient India.

3:23It was often seen as contagious. Some people saw it as an inherited illness, especially in northern Europe and the United States. It was seen as a genetic disease that was associated with certain personality traits. If we go all the way back, we don't know that much about how we saw tuberculosis, But we know that it's probably responsible for around one in seven of all human deaths of the 120 billion people who've ever lived. About one in seven have died of TB. And this is like by far the championship killer of humans, correct? Yeah, yeah. It's winning the all-time race in terms of infectious diseases.

4:02But it's also winning the current race, which is especially discouraging because this year TB will be our deadliest infectious disease, just as it has been for most of human history. Yeah. So tell me about that period of time where tuberculosis was actually called consumption, when it was perceived as a genetic malady, a poetic and romantic malady. Could you tell me about that? Because the real symptoms of tuberculosis, coughing up blood, extreme weight loss, those don't sound beautiful or poetic. Yeah, so tuberculosis has always been a highly stigmatized disease, like any disease that's seen as very serious and threatening.

4:41But at the height of what one person called the frightful tuberculization of humanity, at the height of the Industrial Revolution, tuberculosis was killing about a third of all people. It was killing rich people, poor people. Charles Dickens called it the disease that wealth never warded off. It was a disease that could strike anyone anywhere. And so we couldn't stigmatize it away. We couldn't say, well, this is just a disease of the poor or just a disease of drunk people or just a disease of this marginalized group or that vulnerable group because it was a disease of everyone. And so for a period of about 150 years, especially in Northern Europe, it was also a hugely romanticized disease.

5:23And consumption was widely seen as an inherited disease. And it was a disease that made you literally more beautiful, made your skin pale and your cheeks rosy and your eyes wide. Like even as her sister was dying of tuberculosis, Charlotte Bronte wrote, consumption, I am aware, is a flattering malady. And it was also seen as a disease that made you into a genius that, like, I remember Percy Shelley wrote John Keats when Keats was dying and said, well, you know, this consumption is a disease that tends to strike people who write good verses as you have done. You know, which was, which I find especially interesting because Shelley knew that he also had consumption.

6:07So in some ways, Shelley was like, you know who else is good? Me. Okay, so in the US and Europe, consumption made you this beautiful genius. But then there was a shift from that thinking to seeing it as more of an infectious disease experienced by people who are not privileged. And that shift happens starting in the late 1800s, when scientists discover that tuberculosis is actually a bacteria. Yeah, almost like a light switch. Very few things in history are like a light switch. And I'm exaggerating when I say it's like a light switch. It was really like a decade, but that's relatively short. You know, I often have people say to me, I wasn't aware that consumption and tuberculosis were the same disease.

6:51And I tell them that totally makes sense because the way consumption was imagined culturally as this ennobling disease that made you beautiful, it made you sensitive, it made you write beautiful poetry is completely different from the way we imagine tuberculosis today. And those are all cultural constructs, but of course that profoundly shapes not just how people live with the disease, but also who lives with it and who dies of it. And so once we understood that TB was infectious, we started to immediately or almost immediately see it as a disease of poverty, of crowded working and living conditions, of the cities that were called these, you know, these tubercular factories of urbanity or whatever.

7:37Right. And so once people in the US and Europe figure out that TB is contagious, that leads to this sudden fixation on cleanliness. Can you tell us more about that? Oh yeah, an obsession with hygiene. I mean, I think I republish in the book a poster that said, you know, do not kiss babies. Your kiss of affection brings the risk of infection. And that was a big thing. Don't kiss babies, which is, you know, if you've ever had a baby, You want to just gobble them up. But also clean shaves became very popular because there was this so-called revolt against the whisker as people believed that there must be untold number of bacteria crawling in those whiskers.

8:20Little did we know, of course, that half of all human cells are, in fact, microbial that don't even belong to us. Okay, so this is kind of the part of the story, you know, when people have some purchase as to what causes TB and how it spreads. that I feel like the everything is tuberculosis part of your book, everything is tuberculosis, comes about. We're talking the very late 1800s, early 1900s. And we start to see the disease influencing the built world and design. So can you tell me some of the various ways in which everything is tuberculosis? Yeah, I mean, tuberculosis shaped history just as history shapes tuberculosis.

8:57And so everything from the Adirondack chair, which was invented to give people living with TB a chance to sit at a very specific position so they could ostensibly get more oxygen into their lungs, to the great state of New Mexico. New Mexico had all the institutions needed for statehood and was seeking statehood. And the U.S. Congress turned them down again and again because so many people in New Mexico did not speak English as their first language or were indigenous people. And the U.S. just didn't want to include a state like that, to be frank, because of racism. And so people in New Mexico were like, man, we've got to recruit some white people if we're going to become a state.

9:36And the way they did that was by reaching out in cities to people who were living with consumption or tuberculosis and saying to them, hey, come to New Mexico. Big skies, clean air, dry air. You can dry out those wet lungs of yours. And it worked. You know, it was a big part of the reason why, not the only reason, obviously, but a big part of the reason why Congress finally relented and brought New Mexico into the union. And by the time New Mexico did become a state, over 10 percent of all people in the state were people living with tuberculosis. And one of my favorite things from this part of the book is the story about tuberculosis and cowboy hats.

10:13Yeah. Cowboy hats definitely wouldn't exist, or at least not as we have them today, because John B. Stetson was a hat maker living in New Jersey when he got sick with tuberculosis and was told to go west. And when he went west, he eventually recovered. We don't know why about 25 % of people will eventually recover from their active disease and go on to live long, healthy lives, but some do. We've never understood that and still don't fully. But John B. Stetson was one of those who recovered. And when he recovered, the first thing he thought was, I think I can improve these hats. And that's how he came up with the Stetson hat.

10:48Because heretofore, what were hats like in the West? So they had like, they had coonskin caps in the West, which were literally bug infested, right? Like disgusting. And then they had straw hats that were brought up from people who lived in Mexico or Texas, which worked great, except when it rained, when they weren't particularly waterproof. And so John B. Stetson was like, oh, I can solve this problem easy. I'm literally a hat maker. I know how to do this. Okay. So another invention that you write about that's related to TB is the sanatorium, which is a type of building that we don't see built or used anymore, but was a huge part of society during the late 1800s.

11:28Can you talk about the sanatorium boom in Europe and the U.S.? I mean, nowadays, these sanatoria, I don't know if this is your relationship with them, but they're primarily like urban exploring spaces. Exactly. Yeah. You know, like they're mostly sort of abandoned buildings in the middle of weird places that 27-year-olds go to feel alive. That's right. But at the height of the sanatorium craze, there were almost as many hospital beds in the United States in sanatoria as there were in all hospitals combined. These huge buildings where people living with TB would be sent or would go in order to try to recover their health.

12:08These places were often in rural places or in mountain air was one way that people tried to respond to TB. Dry air was another way. Like California advertised itself as the land of new lungs to try to encourage people. I think almost as many people went to California seeking treatment for TB as went to California during the gold rush, actually. So it was quite a movement of people all around. And all they're doing inside the sanatoria is just sequestering people to rest with their tuberculosis. It's not really a treatment center. No, it was a rest center. So they would call it curing and you would have to cure for eight or 10 hours a day.

12:47And when you were curing, you'd often be outside trying to take in the sunshine, but you couldn't move. You were discouraged from talking in many cases. You were discouraged from having visitors because that could excite your nervous system, which was seen as worsening TB. and so it was a really highly, highly controlled life. So let's talk about the cure for tuberculosis. At what point did people figure out how to fight it rather than just live with it? We didn't have a cure until the 1940s when the first antibiotics were synthesized and that was just a game changer for tuberculosis. I mean, when my great uncle died of TB in 1930, his name was Stokes Goodrich.

13:30And when he died of TB, there was just nothing that could be done. They put him in a sanatorium. He had the best care that money could buy and he died anyway. And that was the story over and over again. But once we started developing antibiotics in the 1940s and then eventually by the early 1950s, realized that we could use these antibiotics in concert with each other as a kind of cocktail that we could not only treat the disease and have it retreat, but we could cure it. And in that moment, you know, hundreds of thousands of people who were living in sanatoria were suddenly able to go home, live their lives.

14:08It was an utter miracle, a scientific miracle of the highest order. And between 1945 and 1965, we developed seven or eight different classes of antibiotics that can fight TB. It was this hugely successful period in the fight against the disease.

14:29In the 70 years since we found a cure, tuberculosis has been effectively wiped out in Western countries thanks to a combination of prevention, widespread TB testing, and powerful antibiotics. But throughout the global South, not only has TB persisted, it is thriving. After the break, we'll talk about how a disease with a cure can still be killing millions of people and what the future of TB might hold.

15:07We are back with John Green talking about his new book, Everything is Tuberculosis, The History and Persistence of Our Deadliest Infection. So you read about how even though TB has been deadly for so long and still is, we have developed some very effective ways for preventing TB and surviving the infection. So can you talk about that? So there's just the functional advance of the drugs themselves, but there's also advances in terms of how we distribute that stuff. So in the 25 years since I graduated from college, TB deaths have dropped by about 50%. And a lot of that's due to investment, especially by the U.S.

15:44government. The U.S. government has long been the leading funder of TB research and also TB response overall. Also, other governments stepping up have played an important role in places from Sierra Leone to the Philippines. So that's the key to distributing this stuff at scale. But there's also been other major innovations in terms of our ability to detect TB earlier and then also to offer preventative care. So we can offer a shorter course of antibiotics to somebody who's been exposed to TB to make sure they never get sick. And that can be a very effective way of stopping chains of transmission.

16:21Yeah. Another key component to tuberculosis, because the way it functions biologically, is like detection is almost as important as the drugs to treat it. Can you talk about the role of detection when it comes to tuberculosis? Yeah, detection is super, super important. It helps to detect the disease earlier because then you don't have permanent lung damage. And we have these wonderful tools that we've had for a long time called chest X-rays, where you can tell pretty quickly if someone has tuberculosis. We also have now, over the last 10 or 15 years, developed these incredible molecular tests that in about two hours can tell you not just if someone has TB, but which antibiotics their TB will respond to.

17:06Total game changers. Unfortunately, they're really expensive. I was in a lab once in Sierra Leone and I saw their gene expert machine and I said, oh, you have a gene expert machine, that's so cool. And he was like, yeah, if only we could afford the tests. Oh my God. Well, what really struck me when I was reading your book is that there's a real contrast between the West and the rest of the world. 1.25 million people still die of TB every year, mostly in the global South. And that number is insane to me because this is a disease that we cured. So why is TB still a problem for so much of the world?

17:40Right. So there's a lot that goes into this question. TB is a curable disease, but it's not easy to cure. Like when we think about antibiotic related bacterial infections, a lot of times we're thinking about like a strep infection in our throats. or that kind of thing, which can be treated with seven to 10 days of antibiotics. TB requires at least four months of daily antibiotics taken in a very specific cocktail, often six months, sometimes longer. And it is onerous because we still often use a strategy called directly observed therapy, where you have to be seen by someone who isn't in your family taking your medication each day.

18:20And if for some reason you couldn't get to the clinic, If you were too sick, if you couldn't afford transportation, whatever that is, then you wouldn't be able to access your medication and you could experience an interruption in treatment. Right. And you actually talk about one patient that you met at a TB hospital in Sierra Leone. And you get into how his story shows exactly how incredibly expensive and hard it can be to access good treatment. So tell me about meeting Henry. Yeah, so in 2019, my wife Sarah and I were visiting Sierra Leone with Partners in Health to learn about the maternal healthcare system there, which Sarah and I have been working on with PIH on strengthening with the government for a long time.

19:03And on the last day of our trip, a couple of the doctors we were traveling with asked if we could visit the TB hospital. And when I got there, I opened the car door and this kid was right there and he just physically grabbed me by the t-shirt and started walking me around the hospital. And I learned that his name was Henry and that's also my son's name. And he looked about the same age as my son. And I just, I was immediately taken with this kid. He was so charming and charismatic and he took me to the lab. He took me to the wards. I was astonished by how sick people were. I had never, you know, I've worked in hospitals and stuff, but I'd never seen that many people that sick in one place before.

19:49And he took me to the kitchen where the food was made. And then eventually we made our way back to the doctors and they kind of shooed him away. And I said, whose kid is that? Is that one of y 'all's kids? And they said, no, that's one of the patients we're really concerned about actually. And it turns out that Henry wasn't nine like my son was. He was 17. His body had just been stunted by malnutrition and then by TB. and I mean, Henry probably first got sick when he was five or six with TB and he started to get treatment, but then that treatment was interrupted, which happens sometimes. And when that happens, you have a much higher chance of developing drug-resistant TB and that's what happened to Henry.

20:27He developed a strain of tuberculosis that was resistant to our first-line antibiotics. And when I met him, he seemed to be in good health, but the doctors already knew that the second-line antibiotics were failing, that they'd succeeded in pushing back the disease, but now the disease was beginning to roar back. When those second line antibiotics fail, it was called the injectable regimens. When those injectables fail, you know, I had one doctor tell me that's when you put the stethoscope down. There's just not much you can do. And, you know, that is the case for the vast majority of people who are like Henry.

21:03Yeah. It's really heartbreaking. One of the other obstacles that countries run into is the exorbitant cost of care. Like the GeneXpert TB testing machine that you talked about, which costs about$25 to test one person, that's more than half of what Sierra Leone spends on healthcare per person each year. And then there's the greed of the pharmaceutical companies, which can charge whatever they want to for life-saving drugs. But you also say that there's been some successful pushback against that. Yeah. Yeah. So between 1966 and 2012, we didn't develop any new drugs to treat tuberculosis, which was a real catastrophe.

21:41But then in 2012, we did develop some new ones, the most important of which is probably bedaquilin, which is a drug that was, the research and trials for it were funded primarily by public money, primarily by the U.S. government. But the patent is actually owned by Johnson & Johnson, a pharmaceutical company. And when their patent expired, they tried to file a secondary patent, not on the drug itself, but on a compound that makes the drug more effective. And TB activists in India very smartly went to court and said, look, this is not real innovation. This is just a company trying to extend its patent forever.

22:23And after they extend their patent because of this compound, they'll find another compound to extend the patent for. And, you know, we'll never get this drug's price down. And price is a huge barrier. I mean, a huge, huge barrier. This is why people are dying, is because of price. I mean, getting the drugs where they need to be is a challenge, but price is the biggest barrier. And the Indian court was like, yeah, there's no real innovation in this compound. This is just an attempt to evergreen a patent. And so in India, it became possible to get generic bodaculin. But in almost all of the world, there was still these secondary patents stopping generic production.

23:00and lots of people came together and pressured Johnson & Johnson to abandon their secondary patents, which to their credit, they eventually did completely so that now the price of binaculine in just two years has gone down by over 60%. So we're living in a particularly devastating moment right now for tackling TB. Since January, the Trump administration has cut USAID and pulled the U.S. out of the World Health Organization. We've eviscerated international aid programs that funded treatment for tuberculosis. And there's also looming threats to drug research. And even here in the US, where we'd almost eliminated TB, we've been seeing cases rise in the last several years.

23:41And as someone who's been looking closely at the history of TB, I'm curious how this moment is landing for you. Yeah, I mean, not to put too fine a point on it, but I would like to live in a world where whatever the deadliest infectious disease is, is one we don't know how to cure, right? Because at least then it's a technology problem, not a culture problem, not a failure of human-built systems, not a failure of extractive capitalism. It's just that we don't have something figured out yet. With TB, we have it figured out. We know what to do. We've done it before. And then almost all at once, there's been this absolute devastation of watching us walk away from that progress.

24:28And the real problem is that you don't just walk away from progress, you embrace regression. That's what we're doing right now. We're embracing an actively worse world. And how do you see these cuts hitting people in the world with TB? It's just devastating. I mean, we're going to see the number of people who die from TB go up. Every single person right now who's had their treatment interrupted, and we don't even know how many people that is, but it's tens of thousands, hundreds of thousands. Every single one of those people, even if they get back on medication in the next few weeks, it's likely that in many of those cases, that medication won't work anymore because the bacteria will have had an opportunity to evolve resistance.

25:10And to have done that so chaotically, so suddenly, without any warning, across the board, with an axe rather than a scalpel, I don't know how to express the devastation I feel. I mean, I don't feel hopeless. I don't feel despair. I refuse to feel hopeless. But it's been a long time since I was this discouraged. What are some of the things that have happened specifically that you've seen? What has been shut and changed? What protocols have been altered? What is it that is causing this regression? So almost immediately, there were stop work orders issued related to almost all TB response, HIV response, malaria response.

25:53But the word was that there were exceptions for life-saving medication. That's what everyone was told. Now, functionally, as far as I could tell, and I have a lot of friends in this space, and I work with a lot of people, very little money was actually moving, if any. And so you can say that life-saving medication is flowing, but it wasn't. Instead, you know, I would get pictures from friends of warehouses full of TB medication just rotting in the warehouse for want of a continued work order. And then more recently, all or almost all TB response was just cut completely. just ended. And that's the case for malaria response as well, for a huge percentage of our HIV response.