John Green, widely known as a YouTube star and a young-adult novelist, has written a new, already best-selling nonfiction book on the seemingly unlikely topic of tuberculosis. It’s a hopeful book that asks a pointed question: Why does a fully curable disease still kill more than a million people a year?
Last month, when the Trump administration dismantled the U.S. Agency for International Development, American support for key health programs around the world abruptly ended. I invited Mr. Green to The New York Times for a conversation about where tuberculosis came from, why it hasn’t gone away and where it all goes from here.
The transcript below has been edited for clarity and brevity.
Stephanie Nolen: I really love talking about tuberculosis; I can talk about TB all day. But there aren’t a lot of people in my life who are super happy to sit and talk about TB with me. So this feels like a real luxury. I’m so glad that you’ve come to see us at The Times. Want to sit and talk about TB?
John Green: I do, so badly, not least because I am in the same boat. Like, every time I get three or four words into an observation, my kids will raise their hands and say, “Yeah, Dad, we know: It’s tuberculosis.”
Nolen: The Venn diagram of people that I encounter who also really like to talk about tuberculosis is fairly limited.
Green: Same, same. But it’s my favorite topic of conversation.
Nolen: I would say for me, it’s rivaled by H.I.V.
Green: They’re both sort of the exemplary diseases of injustice: diseases that we know how to deal with, we know how to confront, we know how to live in a world without. And yet we choose not to live in that world.
Nolen: What is tuberculosis?
Green: Tuberculosis is a disease that primarily attacks the lungs but can attack any part of the body. You get tuberculosis the way you get any airborne disease. Usually somebody coughs or sneezes and the particles end up in your lungs. And then you have contracted TB. Its biomedical cause is a bacteria called Mycobacterium tuberculosis. But I would argue that really the cause of it in the 21st century — since we know how to cure the disease — is us.
Nolen: Why did you write a book about tuberculosis?
Green: Ultimately, I wrote the book because I met one human individual named Henry Ryder, who was living with drug-resistant TB. And Henry wanted me to share his story. So this is me sharing it. In some ways, it’s a departure, obviously — I’m writing nonfiction about tuberculosis instead of writing books for teenagers. But in other ways, I mean, the character at the center of the book is a teenager who loves poetry, which has always been my jam.
Nolen: In the book there’s a dawning sense of shock and dismay and then outrage. In real life, was that process a dawning one? Or did you go pretty quickly from zero to outrage?
Green: I mean, I was really surprised to learn that tuberculosis is the deadliest infectious disease in the world. Even though I cared about global health, I would have bet my life that it was malaria or H.I.V., because those diseases get so much more attention. They still don’t get nearly enough attention, it must be said; people don’t pay enough attention in the rich world to problems in the global South. But I started out really surprised by the extent to which tuberculosis had shaped history and was shaping our shared present.
And then I did grow outraged, as I came to understand how curable this disease is. It’s not easy to cure, but neither was my brother’s cancer. My brother had cancer a couple of years ago; it cost about 150 times more to cure than it would have cost to cure a case of drug-resistant tuberculosis in, say, Sierra Leone. And yet nobody at any point said to my brother: “I’m not sure this is cost effective. This doesn’t make sense. We have better uses of resources.”
It’s not wrong to say that focusing on prevention is more cost-effective than treating cancer — but it’s still a good idea to treat cancer. That’s when I became outraged, I think: When I realized how we’re just not acting as if all lives have equal value.
Nolen: It’s also really hard, right? Getting the pills to people. All the logistics, the infrastructure, but particularly the cost of those drugs. And it’s a lot of drugs. They’re hard drugs to take. They’re hard on people. Even when you can get people the meds, it’s really hard.
Green: Yeah, it’s four to six months of antibiotics, and that’s with the newest regimens; it used to be more than that. And it’s taken every day. And those antibiotics have all kinds of side effects. And you have to take medicine even when you don’t feel bad. Everybody knows what it’s like to get strep throat and get a seven-day course of antibiotics and not take the seventh day of antibiotics. Well, now we’re asking people to take 120, 160, 180 days of antibiotics. That’s a serious investment.
It’s very common to judge patients who abandon their treatment. My friend Henry, who’s at the center of the book, was somebody who would be termed a noncompliant patient. His father removed him from treatment a few weeks into it and decided that, as his father put it, this wasn’t an illness for the doctors, this was an illness for faith healers. It’s easy to judge that decision. At the same time, nothing that the Sierra Leonean health care system had ever offered Henry’s father would ever instill a minute amount of trust, right? I mean, this is a health care system that’s so profoundly impoverished. If Sierra Leone spent the same percentage of its G.D.P. on health care that is spent in Germany or the United Kingdom, Sierra Leone would have about $48 per person per year to spend on health care. That’s not enough to pay for my Lexapro prescription, let alone a functioning health care system.
I have severe O.C.D. and so I take two medicines every day. Those two medicines are essential for my survival, and yet I struggle to take them. One of the reasons it’s hard is because of the stigma associated with mental illness. And TB is so stigmatized in many impoverished communities that I think people hear a similar story, like: “If you were a proper person, if you were fully integrated into the social order, you wouldn’t have gotten this disease and you wouldn’t be here.” And so it’s hard to take medicine.
Nolen: I’ve been writing about H.I.V. for 25 years, and the stigma remains. I was astonished to meet young women in Kenya last week whose big challenge in taking their drugs has been stigma; they’ve got to hide from their families. Thirty years into the African epidemic, the stigma is still as strong. It’s been there from the beginning, because it was gay men and then Haitians and then Africans who had H.I.V.
But TB didn’t have that. In your book, you paint this really compelling portrait of when TB was kind of glam and made you creative and sort of attractively frail. And then somewhere along the way that flipped, once we recognized that it was mostly poor and racialized people who now had the disease.
Green: In northern Europe, in the U.S., we understood tuberculosis as an inherited disease. At the time, it was believed that you also inherited lots of other personality traits alongside tuberculosis: a certain sensitivity to the world, a creative genius, a physical beauty, especially in women, because tuberculosis made them quite frail and thin and pale-skinned.
Nolen: The alabaster brow, the little dots of red in your cheek.
Green: Exactly: “The hectic glow of consumption,” as Henry David Thoreau put it. Death and decay are often beautiful, he said, like the hectic glow of consumption. This was so common at the time.
But the reason we could believe this was because we didn’t understand that TB was infectious. And so in 1882, when Robert Koch proved that tuberculosis was caused by a bacteria, it went from being this beautiful disease to sort of a body horror. Humans, who had found a way to conquer the tiger and the lion, were suddenly, it turned out, being destroyed from within by these horrifying animals you couldn’t see. And I think that contributed to the reimagining of the disease as one of filth, a disease of poverty, a disease of slums. How we imagine illness is so important. And we mostly talk about illness as a biomedical phenomenon, but how we imagine it socially is really significant. It shapes how people die of TB, but it also shapes who dies of TB.
Nolen: How do we imagine TB, do you think?
Green: Mostly people don’t think about tuberculosis. Or they think of it as the disease that kills the main character of Red Dead Redemption II, the video game. Or as the disease that kills Satine in “Moulin Rouge.” Like, it’s mostly a narrative device these days.
But insofar as we imagine it at all, we see it very much as a disease of poverty and marginalization. And that’s true, right? Tuberculosis does follow the paths of injustice that we blaze for it. But it’s also true that tuberculosis is a disease that anyone can get. One of the biggest stars in Bollywood has spinal TB. George Orwell died of TB. Disease doesn’t have a moral compass, man! It drives me crazy when people try to impose these ethical narratives on a disease like tuberculosis. Tuberculosis doesn’t care if you’re a good person or a bad person. Poverty doesn’t care if you’re a good person or a bad person. You’re right, it outrages me.
Nolen: The book has a kind of hopeful tone to it. I wrote a hopeful TB story last year talking about how, yes, we’re still treating most people who get TB with drugs that have been around for 70 years, which are not great, and we’re still diagnosing lots of TB cases with a technology that was first used 100 years ago and doesn’t work great. But there are some really promising vaccines. There is at least one extremely promising vaccine in a late stage clinical trial. There are more vaccines in the pipeline. There are new treatment regimens in advanced clinical trials. More cases were getting detected early.
I was a little bit hopeful 18 months ago when I wrote that piece. Maybe when you were finishing the book, you felt similarly. But I feel like in the last two months we’re living in a new place.
Green: I imagine it as a very long staircase that ends with the eradication of TB and starts hundreds of years ago, when one in seven people were dying of TB. And we’ve been walking up that staircase. We can take steps forward or we can take steps back. And — I’m sorry. I got a little emotional.
We didn’t take a step back. We fell down the staircase. And it is devastating. You report that hundreds of thousands of people have seen their treatment interrupted. The majority of those people will die. Elon Musk tweeted yesterday, “I’ve never physically hurt anyone.” And I just disagree with that. Hundreds of thousands of people are going to die, and they’re going to die for no good reason. They’re not even going to die because we decided to stop providing foreign aid. They’re going to die because we decided to stop providing foreign aid in the most chaotic, unpredictable, inconsistent, radical way possible. It seems merely punitive to me.
I am still hopeful. I’m probably more hopeful than you are. It’s easy for me to be more hopeful than you are, because I’m further from the ground than you are. But it’s beyond any horror that I can imagine to just fall down that staircase. And all the progress that we’ve made, all the work that we’ve done — we were maybe months away from a tongue swab test that would have made it vastly easier to diagnose TB. And now we just canceled that. We already spent almost all the money. You report about how there are TB medications sitting in warehouses that we already paid for that aren’t getting to people because we stopped paying for the transportation to get them there. And as a result, many, many people are — it’s not just that they’re going to die. They’re dying right now.
Nolen: Among the many heartbreaking conversations I had in Kenya was one with the doctor who runs the TB program in Kisumu County, which has the highest or the second highest burden of TB in Kenya. And he was talking about exactly the chaos that you’re describing. They haven’t received any money. And so they have some medicines in stock, but others haven’t arrived and they don’t know what to tell people, and they don’t know where to send people for their tests. And he said to me: “You know, we actually had a plan. We were going to train people to take over these responsibilities. And over the course of three years, we were planning to bring this all in-house and be doing it ourselves and no longer be relying on the U.S. government.” I said, “When was that plan supposed to start?” And he said, “Oh, this month.”
Green: Exactly. If we’d executed the same plan in a less chaotic and punitive way then we would be living in a different world. So I think it’s important for listeners to understand that we could live in a world without tuberculosis. We know how. We reduced tuberculosis by over 99 percent in the United States and other rich countries, and we did it with a comprehensive approach where you actively search for cases. You don’t just wait until people are so sick that they’re coming into the hospital. In the U.S., we sent out all these mobile chest X-ray machines in the 1950s and ’60s in vans and gave people free chest X-rays, and then offered them free treatment and then offered their close contacts preventative care. So we know how to prevent TB with a shorter course of antibiotics. We know how to do this. We know how to live in a world without where TB is not a huge public health concern. We just haven’t done it.
The U.N. estimates it would cost about $25 billion a year. That’s a lot of money, obviously, but it’s also not that much money in the context of global health. We could be walking farther up this staircase that leads us to a world without tuberculosis. And instead we just — things are getting so much worse. And they will now get so unimaginably worse, especially with more drug-resistant tuberculosis circulating in communities. Now that so many people have seen their treatment interrupted, they’re much more likely to get drug-resistant TB. One estimate holds that drug-resistant TB will go up by about 30 percent. It’s a crisis.
Nolen: The first TB patient that I sat down with in Nairobi was a man who had extensively drug-resistant tuberculosis, or XDR-TB — essentially there’s a just a very slim chance that the only drugs we know about will actually cure him. We’re out of options. And he’d come in that day, like he had very optimistically every day for a week, to pick up his delamanid. And it was out of stock.
Green: Oh my god.
Nolen: And I just was, like, “This is terrible for you, Barack. This is terrible for your wife and for your five children.” They’d all been screened, and so far everybody was TB-free. But like so many people, he had been bankrupted by his infection. He’d had to send his wife and his kids back to the village because he couldn’t afford to keep them in the city.
XDR-TB is terrifying for him and for his family and all the people who care about him. But it is also terrifying for the rest of us, for this man to be going to this clinic every day and then back to this apartment building, where he lives crammed in cheek-by-jowl with 500 other people, with TB that he can no longer treat. That is very, very bad for him. But it is also very, very bad for everybody else.
Green: Yeah. I think it’s important to understand that this is a tragedy on an individual level, on hundreds of thousands of individual levels, but it’s also — I don’t know how I feel about the phrase “global health” sometimes, because I think it sounds like we’re only talking about health in impoverished communities. The truth is, this is a crisis for human health, for humans everywhere. A person was exposed to an antibiotic that was hopefully working. And then, due to a stock-out that the United States government caused, their infection now has a chance to develop resistance to that drug, in addition to having developed resistance to so many other drugs.
We could very easily end up in a situation where we don’t have any tools to fight tuberculosis. And that takes us back to the early 20th century. It takes us back to when my great-uncle died of tuberculosis when he was 29 years old. He was working as a lineman at Alabama Power and Light. His dad was a doctor, and there was absolutely nothing that his dad or anyone else could do to save his life.
Nolen: Does anyone in the U.S. get it anymore?
Green: Yeah, we’re going to have about 10,000 cases of active tuberculosis in the United States this year. In fact, the rate of tuberculosis in the U.S. is going up.
Nolen: Why?
Green: We under-fund public health care systems, and also we do a terrible job of getting the cure to the places where the cure is needed.
Nolen: Earlier you said that we know exactly how to live in a world without tuberculosis, but we choose not to. Why do you think we’ve been so content to live in that world?
Green: We treat certain human lives like they’re just not as important. I also think there’s something about the way that tuberculosis works. Maybe it’s that it’s slow-moving. Maybe it’s that it doesn’t attack a community the way a cholera outbreak or other diseases would. I do think that a big part of it is that we just don’t do a good job of including people who live at the margins, and that allows tuberculosis to thrive in the places where human systems fail.
We also still don’t understand why some people develop active TB and others don’t. We know that there are a lot of risk factors for it, like malnutrition, diabetes, H.I.V. infection, which make the immune system weaker. But in a lot of individual cases, we don’t understand why somebody developed active TB and somebody else didn’t.
Nolen: You’ll have one person who’s had untreated TB for a long time, but not the other four people in the room.
Green: Yeah, it’s very weird. King Louis XIII died of it, and his wife didn’t — and they hung out a lot.
Nolen: I mean, did they?
Green: That’s a great point. They did have some kids, though. So I think a little.
Nolen: In that optimistic story that I wrote a couple of years ago, I talked about how there was progress on vaccines and treatment and about the different factors that contributed to that. In my list, I included a reference to, the young adult novelist John Green and his TikTok account, which was the first time I’d had occasion to put a sentence like that in a global health story. We talked earlier about hope or lack of hope. You’ve identified some things that people can do on a short-term timeline.
Green: Yeah. I mean, we don’t have to live in a world where TB medicines are so expensive. I think that’s the biggest thing. They cost too much. They they’re not as good as they need to be, and they’re not as available as they need to be. So many people are responsible for lowering the price of Bedaquiline and lowering the price of the genetic tests for TB. I think that our community has had a role to play in that story, but it was a small role.
Nolen: When you first came in here, I laughed right through the part where I said, “I’m so glad I get to talk to you about TB.” Every time I’m on The Daily talking about something really awful, many people write in and say, “You laugh too much.” I get that a lot as a global health reporter.
Green: I used to work in a children’s hospital. It was the saddest place I’ve ever been, but it was also the funniest place I’ve ever been. Like, people are fully human, and even when they’re sick they’re capable of astonishing levels of gallows humor. That should be part of what we acknowledge about humanness: We’re all funny. Even amid horror, there is laughter, and we have to make space for both those things.
This is beyond a bummer, right? The level of human devastation is almost impossible for us to engage with. But it’s really important not to essentialize the lives of people living in poverty or the lives of people living with TB, because their lives are as complex and multitudinous as anyone else’s. My friend Henry is hilarious. He’s a funny kid — I mean, he’s 24 now. He’s a funny young man. People should be allowed to be funny. Life is everything: Life is tragic and it’s hilarious and it’s a farce and it’s a drama. It’s everything.
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