The Many, Many Ways Tuberculosis Shaped Human Life

FLORA LICHTMAN: This is Science Friday. I’m Flora Lichtman.

As the US retreats from global health, withdrawing from the WHO, dismantling USAID, experts say we can expect implications for the spread of certain diseases around the globe. Today we’re talking about one of them, tuberculosis.

Now, tuberculosis may not be on your radar. In the US, it’s rare, and if you do get it, there are effective treatments. But America’s relationship with TB today is very different than it used to be, and it’s vastly different from how people in other parts of the world relate to this illness, and that’s because TB remains the deadliest infectious disease in the world, killing over a million people every year.

My next guest, who you may know from his novels, including The Fault in our Stars and Turtles All the Way Down, explores our relationship with TB and what its path reflects about our society and culture in a new book. John Green is the author of Everything is Tuberculosis– The History and Persistence of our Deadliest Infection. John, welcome to Science Friday.

JOHN GREEN: Thank you so much, Flora.

FLORA LICHTMAN: John, you’re mostly a novelist.

JOHN GREEN: I am.

FLORA LICHTMAN: This book is a departure. Why a medical history? Why TB?

JOHN GREEN: Well, it is a very different kind of book for me, but on the other hand, I’m still writing about smart teenagers who love poetry, which has always been an interest for me. Why this book? I guess the short answer is that in 2019, I was traveling in Sierra Leone with my wife and the global health organization Partners in Health, and they asked us to go to a TB hospital on the last day of our visit, and I didn’t even know that there were still TB hospitals. I was astonished to learn that TB is still the deadliest infectious disease in the world.

And while we were at that TB hospital, I met a boy named Henry, who shares a name with my son and who, when I met him, looked to be about the same age as my son. And he took me all around the hospital and showed me the laboratory in the kitchen and the wards. And, eventually, when we got back to the doctors, they sort 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 a patient, and he’s one that we’re really concerned about. And that was the beginning of my four-year journey to try to understand how someone like Henry could end up with a life-threatening case of tuberculosis.

FLORA LICHTMAN: The title of the book is striking, Everything is Tuberculosis. Will you explain it?

JOHN GREEN: Yeah. I mean, politics is tuberculosis, as has been much in the news lately. Fashion is tuberculosis. One of the reasons I’m clean shaven right now is because of TB. There was a revolt against the whisker in the early 20th century when we figured out that tuberculosis was caused by bacteria. So the idea was–

FLORA LICHTMAN: I’m still revolting against the whisker.

JOHN GREEN: Yeah, I don’t blame you. And so everything really is tuberculosis. But to actually answer your question, I have to tell you a secret, which is that I submitted the book to my publisher with the title Everything is About Tuberculosis. And my publisher wrote back and said, I really enjoyed your book, Everything is Tuberculosis. And I said, that’s a much better title.

FLORA LICHTMAN: [LAUGHS] Tell me a little bit about the disease. If you were going to give a character sketch of TB, how should we get to know it?

JOHN GREEN: Well, TB has been with us for a very long time, probably for all of human history. And it has been one of the deadliest diseases we’ve ever known. By one estimate, it’s killed about one in seven people who ever lived.

FLORA LICHTMAN: Wow.

JOHN GREEN: But today, tuberculosis is a disease that really travels the paths of injustice that we blazed for it. TB is rare in the rich world. It’s rare among wealthy people. It is primarily a disease that affects the most marginalized and vulnerable among us.

As for how the disease itself works, it’s a pretty fascinating disease because the bacteria itself has this thick, fatty cell wall that’s very difficult for infection-fighting cells to penetrate, and so that’s a great advantage for it. The big disadvantage is that because it has that thick cell wall, it takes a long time to replicate, as bacteria go, and so it can only move through the body fairly slowly, which is one of the reasons we often associate TB with long-term illness, with illness that can last years or even decades.

FLORA LICHTMAN: It also has this mysterious feature that it can sort of lay dormant, right, and then roar to life.

JOHN GREEN: Yeah. So about a quarter of all living humans right now have been infected by TB, but in the vast majority of cases, those people will never become sick. They’ll have what’s sometimes known as latent TB, which is where the bacteria is still in the body, but it’s surrounded by these tubercles, these groups of white blood cells that basically surround the bacteria and make it so that it can’t sick in the body. And as long as those tubercles can cover all the bacteria, it’s fine. But if the bacteria somehow break out or if the immune system isn’t strong enough to hold the infection in check, then people can develop active tuberculosis, which is a life-threatening emergency.

FLORA LICHTMAN: I thought one of the most fascinating parts of your book was this idea of how we imagine illness. You write about how we think a lot about how we treat illness but not so much about how we imagine it. Will you break that down for us?

JOHN GREEN: Sure. Before 1882, when we knew for sure that TB was caused by a microorganism and that it was infectious, it was widely believed in northern Europe and the US that TB was an inherited condition, and it wasn’t called tuberculosis. It was called consumption, usually, colloquially because of the way it consumed the body.

And when we thought that TB was an inherited disease, we imagined it very differently. We imagined it as a beautiful disease, in many ways, a disease that was associated with intelligence and sensitivity, a disease that was associated, especially in women, with beauty.

FLORA LICHTMAN: Consumption chic, you write about.

JOHN GREEN: Consumption chic, yeah. It was seen as a disease that made you more beautiful. Even as her sister was dying of tuberculosis, Charlotte Bronte wrote, “Consumption, I am aware, is a flattering malady.”

FLORA LICHTMAN: Because why?

JOHN GREEN: Well, I mean, some of it is because of racism. At the time, white skin was seen as beautiful skin, and tuberculosis does make you very pale and gives you rosy cheeks from the fever that you often have with the disease. But I also think something else was at work, which is that so many people were sick. I mean, at the time, about one in three people in England were dying of tuberculosis. And so you couldn’t stigmatize it away. You couldn’t say, well, this is only a disease of the poor or the drunk or the whatever. You had, instead, to acknowledge that it was a disease of everyone, and so one way to do that is to romanticize the disease, and I think that’s what really happened.

We often think of romance as being the opposite of stigma, but they’re both strategies for othering the person living with an illness. They’re both strategies for saying, well, these people are fundamentally different from the social order. And so whether it’s romanticizing someone or dehumanizing them, they’re both strategies for saying, well, that person is other. That person is different.

FLORA LICHTMAN: This is the problem with creating meaning around an illness.

JOHN GREEN: Absolutely. Yeah. I mean, Susan Sontag famously wrote that nothing is more punitive than to give a disease a meaning, and yet we go on giving meanings to disease anyway. We can’t help but imagine meanings to disease because we’re pattern-seeking creatures. And so, of course, tuberculosis doesn’t care about morality. My dad had cancer twice when I was a little kid, and I saw some of that up close, the way people would try to moralize my dad’s illness, tell him it was because he didn’t exercise enough or didn’t eat this food or that food or because his parents smoked or whatever the reason was. But my dad didn’t get cancer because he didn’t eat vegetables. My dad got cancer because he was unlucky.

FLORA LICHTMAN: Do you feel like you’re trying to make meaning around TB with this book?

JOHN GREEN: I think I’m trying to strip away some of the ways we’ve imagined TB and argue that we might imagine it a different way. We might imagine it as a disease that is optional for us, a disease that we’re choosing to live with and that we could make a different choice.

FLORA LICHTMAN: After we learned that TB was caused by a bacteria, that it wasn’t inherited or the disease of sensitive souls, how did the narrative around it change?

JOHN GREEN: Well, it was almost like a light switch. If consumption was a disease of beautiful people and sensitive souls, tuberculosis was this horror of being invaded by a microorganism. It was an absolute terror to people at the time and, I would argue, should still kind of terrify us. I’m confused why we aren’t freaking out all the time about the fact that half the cells inside our body are microorganisms.

FLORA LICHTMAN: There’s just so much to freak out about, John. It’s really hard to sort, you know?

JOHN GREEN: [LAUGHS] You’re not wrong. It’s hard to know where to put your “freakyoutedness” right now.

FLORA LICHTMAN: You wrote that when TB wasn’t so romantic anymore, the narrative around it became racialized.

JOHN GREEN: Yeah, very much so. So it was widely believed in the US and Europe in the 18th and 19th centuries that Black people and people of color generally could not get tuberculosis, precisely because it was seen as a disease of civilization, and so racism dictated that it would be seen as a white person’s disease. And then after we understood that TB was infectious, it immediately switched to being seen as a disease that affected primarily Black people and other people of color, and it was racialized that way.

FLORA LICHTMAN: Give me an example of how this played out.

JOHN GREEN: One example is that some white doctors argued that there was some something inherent among people of color that caused them to be racially susceptible to tuberculosis. Now, we knew this was hogwash from the beginning. Lots of people were pushing back against it, which I think is really important to remember. When we talk about scientific racism, we’re not talking about all of the scientific community. We’re talking about the big scientific institutions and people who had a lot of power, but there were people pushing back against it.

But you would read that it was about lung capacity or it was about skull size or it was about this or it was about that when, of course, it was really about the fact that because of racism, people of color were more likely to live in crowded spaces. They were more likely to work in crowded factories, and so they were more likely to get tuberculosis.

FLORA LICHTMAN: It’s interesting to think about disease as a mirror just for society’s point of view, people’s point of view. What you’re saying is that we were mapping a lot onto this disease.

JOHN GREEN: Yeah, it’s both that– I mean, obviously, human history has profoundly shaped tuberculosis, and tuberculosis has profoundly shaped human history, but I think looking at the history of TB does give us a mirror. It does show us ourselves. It says a lot about humanity, first, that we discovered a cure for tuberculosis, which was incredibly hard work and involved a stunning, beautiful collaboration of thousands or even millions of people over many decades. And yet it also says a lot about humanity that in the 70 years since we discovered that cure, we’ve allowed over 150 million people to die of tuberculosis.

FLORA LICHTMAN: Let’s talk about that cure. How did it come about? What is it?

JOHN GREEN: Well, tuberculosis is a bacterial infection, and the initial drugs used to treat it were antibiotics. And a lot of the push toward creating antibiotics was oriented around concern about TB. And so we developed about seven or eight classes of antibiotics that can successfully fight tuberculosis between 1945 and the mid 1960s. That was an incredibly productive 20-year period for developing anti-TB drugs. And as a result, in communities that had access to those drugs, TB became, at first, a treatable condition and then, eventually, a curable one so that millions of people who had lived in sanatoria and thought that their lives would be over or at least shortened by this disease found themselves walking out of those sanatoria as healthy, cured people.

FLORA LICHTMAN: Let’s talk about some of the limitations to treatment today. Tell me a little bit about Henry and his recovery.

JOHN GREEN: Yeah, so Henry got sick with tuberculosis initially when he was about five or six years old, and he received some treatment. But then his treatment was interrupted for a while, and as a result, he developed drug-resistant tuberculosis, which is a much more serious, much more difficult-to-treat beast entirely. And by the time he was 14 or 15, he was really, really sick, and he was eventually admitted to the only tuberculosis hospital in Sierra Leone, and that’s when I met him, when he was first trying to get access to drugs to treat multidrug-resistant tuberculosis.

Unfortunately, even the second line of antibiotics failed Henry, and so he was in a truly dire situation, and the vast majority of people globally who are in that situation eventually die of their disease. But Henry was very fortunate to have the support of the Sierra Leonean Ministry of Health and also an extraordinary doctor, Dr. Girum Tefera, who saw to it that Henry would get access to the newest, best medications we have, as we have developed a couple new medications for TB since 2012 since we changed some of the incentives around developing those drugs. And as a result, after nearly three years of daily treatment– I mean, Henry probably took 20,000 pills during the course of his treatment, but eventually he was cured of TB, and today he’s a student at the University of Sierra Leone.

FLORA LICHTMAN: This is Science Friday from WNYC Studios. If you’re just joining us, I’m speaking with John Green, author of Everything is Tuberculosis. What needs to happen to get rid of TB?

JOHN GREEN: We know how to get rid of TB from communities because we’ve done it. We’ve done it in the United States. We’ve done it in much of the wealthy world. And what needs to happen is a three-step process. It’s, of course, known by an acronym, like everything in science, and that acronym is STP, Search, Treat, Prevent.

You actively search for cases of tuberculosis so that you don’t find people only when they’re so sick that they’re already coming into the hospital. You treat every person who you find who’s sick, and you offer preventative therapy. We have a great strategy for preventing the emergence of TB in people through a short course of antibiotics. You offer preventive therapy to their close contacts.

And we know that with that search, treat, and prevent strategy, you can drive TB down to essentially zero where it’s just not a public health threat anymore. We just need to marshal the resources to do it where the disease is still prevalent.

FLORA LICHTMAN: Well, that’s also the point you make in the book, that it’s kind of disgusting to talk about whether it’s economically feasible to cure people when we have a cure.

JOHN GREEN: Yeah, my brother just had cancer last year. He had Hodgkin’s lymphoma, and it cost about a hundred times more to cure my brother than it cost to cure Henry of his tuberculosis. And not once did anyone ever suggest that it was a bad idea to treat Hank. Not once did anybody ever say to me, I’m not sure that the healthcare system can realistically afford that. I don’t know if that’s a cost-effective treatment. The assumption was that my brother’s life is valuable and that my brother should be allowed to live a long and happy life, and thanks to his treatment team and the treatment that he received, we have every expectation that he will live a long and happy life. For someone like Henry to have their life so devalued that they’re told that it’s not cost effective to treat their tuberculosis, I think it reveals a lot about the world that we’re sharing, but it also points me to a world we might share instead, a better and more inclusive world.

FLORA LICHTMAN: I know you love moody, poetry-writing teens, but has your–

JOHN GREEN: The most.

FLORA LICHTMAN: Has your foray into science medical history infected you? I mean, do you think that science will be part of your next project?

JOHN GREEN: I love this stuff, and I love talking to scientists. It’s such a high for me to talk to scientists. It’s just so thrilling to talk to people who have dedicated their lives to understanding something in real, profound depth.

And so one of the great things about writing about tuberculosis is that I could email a tuberculosis researcher who I came across in a book and just say, hey, I read about your work, and I’m really interested in it, but I didn’t understand this. And then they’ll call me at 10:30 at night and be like, thank you for your email.

[LAUGHTER]

FLORA LICHTMAN: We live that dream every week here on Science Friday.

JOHN GREEN: It’s so fun, isn’t it?

FLORA LICHTMAN: It’s really fun. It’s one of the best parts of the job. John, thank you so much for talking with me today.

JOHN GREEN: Oh, it’s been a real pleasure. Thank you.

FLORA LICHTMAN: John Green is the author of Everything is Tuberculosis, which is also the Sci Fri Book Club pick for May. You can find out more about the book club and enter to win a free book on our website, sciencefriday.com/bookclub. That’s sciencefriday.com/bookclub.

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