“Everything Is Tuberculosis” John Green on Funding Cuts & the Fight to End TB

CHRISTIANE AMANPOUR, CHIEF INTERNATIONAL ANCHOR: Now, a federal judge in Maryland is blocking the Trump-Musk dismantling of USAID, as we mentioned. Author John Green argues the Trump administration’s cuts to foreign aid are making global health outcomes worse, especially for infectious diseases like tuberculosis. Green explains why TB is still so prevalent in his new book. And he joins Hari Sreenivasan to talk about it.

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HARI SREENIVASAN, CORRESPONDENT: Christiane, thanks. John Green, thanks so much for joining us. Most of the folks watching this might remember you from the books that you’ve written, the young adult classics that have been turned into movies and so forth, but you’ve got a new book out, and it is “Everything is Tuberculosis.” This is nonfiction. Why — I know you’ve written nonfiction before, but why tuberculosis? What made you want to go after this topic?

JOHN GREEN, AUTHOR, “EVERYTHING IS TUBERCULOSIS”: Yes, this is certainly a bit of a departure for me, but in other ways, I’m still writing about young people who are interested in poetry, which has always been my jam. I wanted to write about this because I met a kid living with tuberculosis, and after that, the disease became undeniable to me, and I came home obsessed with it. I wanted to understand how it was that I had no idea that TB was still the deadliest infectious disease in the world and why we’re letting a curable disease kill over a million people every year.

SREENIVASAN: You know, the fact that is curable is startling. I mean, what does work? Because we have tried, as you point out, going back in history, we’ve tried everything from, you know, bloodletting to animal sacrifice and everything else that we thought was causing this, it has been around for thousands of years and documented.

GREEN: Yes, I mean, Hippocrates told his students not even to try to treat consumption because it was — it would make them look like bad healers. It’s always been a very difficult disease to deal with. But today, we have powerful antibiotics. Now, it’s not easy to cure tuberculosis. It takes between four and six months generally of antibiotic therapy in order to cure it, but it is very curable. And often, with drugs that have been around since the 1950s or 1960s.

SREENIVASAN: Yes. Maybe a simple science question here, but how does one get tuberculosis? How is it transmitted? What does it do to the body?

GREEN: It’s an airborne disease. And so, it spreads through the air. And the average person who’s untreated with tuberculosis and has active TB will spread it to between 10 and 15 people per year. So, in that sense, it’s a very transmissible disease. It usually settles in the lungs, and that’s where it’s transmitted from, obviously, because of coughing and sneezing and the like. But it can also attack any system in the body. There’s tuberculous meningitis, which probably killed Edgar Allen Poe when it attacks your brain. There’s tuberculosis that attacks your lymph nodes. My friend Henry had his lymph nodes erupt out of his skin because he became so sick with tuberculosis, which is a tremendously painful version of the disease. It can attack the bones. It can really attack anywhere.

SREENIVASAN: And so, what is it that you find weird about this disease? I mean, you call it that. I mean, what makes this so tough to fight?

GREEN: This is a hard disease to fight for a number of reasons, but the biggest reason is a lack of political will and a lack of resources. It’s true that tuberculosis is hard to cure, but my brother had cancer a couple years ago and at no point did anyone say like, oh, I’m sorry, Hank, this is kind of a tough disease to cure. This is going to require several months of chemotherapy and radiation, and we just don’t think it’s worth the cost. And yet, that’s what people in impoverished communities hear all the time when it comes to TB.

SREENIVASAN: So, really, we have the medicines, but there’s a gap between where the diseases and where the medicines are, and that you’re saying is really just politics?

GREEN: It boils down to politics and a will to actually get the cure to the people who need it. Yes. I mean, I think it also boils down — I mean, I argue in the book that tuberculosis is everything and everything is tuberculosis. So, yes, it’s politics, but it’s also history. It’s also colonialism. It’s also strategies of extractive capitalism that just don’t work for impoverished communities.

SREENIVASAN: You know, you say, it has long — tuberculosis has long exploited human biases and blind spots wriggling its way through the paths, injustice creates. Give me an example.

GREEN: Well, I’ll give you a great example. If you or I were to get tuberculosis tomorrow, we would receive the kind of personalized tailored treatment that everybody should deserve. But my friend Henry in Sierra Leone, when he got sick with tuberculosis, he was told that those treatments were not available to him because they weren’t cost effective. So, instead, he was put on a secondary antibiotic for his drug resistant tuberculosis that they should have known from the beginning wouldn’t work, but they didn’t have the money for good tests either. And so, he ended up hospitalized for over three years, taking over 20,000 pills to be cured of his tuberculosis. And many of those pills and many of those months were simply unnecessary.

SREENIVASAN: Why did Henry affect you so much?

GREEN: Well, he has the same name as my son. And when I first met him, he looked to be about the same age as my son, although — who was nine at the time, although I later learned that Henry was in fact 17. It’s just his body was so stunted by malnutrition and TB that he looked much younger. And he’s one of those uncommonly charismatic people. I’m not the only person who’s unusually charmed by Henry. He was sort of the mayor of LaCa hospital, the tuberculosis hospital in Sierra Leone, everywhere he goes. And even today, he’s beloved by the staff at that hospital. And so, he just — you know, sometimes people come into your life, you don’t totally understand why, and you end up spending the next four years obsessed with an infectious disease and writing a book about it.

SREENIVASAN: Yes, yes, yes. You know, you also wrote about an interesting character, Shreya Tripathi, a 19-year-old TB patient in India, and you have actually called her name out sort of in testimony before she died in 2018. You said, she didn’t really die of tuberculosis. What do you mean by that?

GREEN: Well, I think in the 21st century, it’s safe to say that tuberculosis isn’t really caused by a bacteria anymore because we know how to kill that bacteria. We know how to cure tuberculosis. In the 21st century, we have to accept the reality that tuberculosis is caused. by us. And so, the ultimate cause of Shreya’s death was, yes, it was tuberculosis, but it was also official indifference. It was also a failure to get this life-saving drug, Bedaquiline to her in time. All of these things came together to result in Shreya’s death. And so, I don’t think it’s fair to say that she died only of tuberculosis. I think she also died of human built systems that simply didn’t include people like her.

SREENIVASAN: And in this research, you found kind of historical connections to your own family. What happened?

GREEN: Yes, my great uncle Stokes Goodrich died of tuberculosis. When I told my mom I was writing about tuberculosis, she said, that’s what your great uncle died of. And I had no idea. But I eventually unearthed a memoir written by my great grandfather that talks about Stokes’ story. He was a lineman working at Alabama Power and Light when he contracted tuberculosis, and he ended up dying like so many people in a sanatorium in 1930.

SREENIVASAN: You’ve — you kind of point out that, you know, as the title says, the different ways that tuberculosis has impacted society. On the one hand, it might have led to the beginning of World War I. On the other hand, it might actually be the reason that towns in California sprung up. Give us a scope of these places that we don’t see tuberculosis in the history books, but it clearly played a role.

GREEN: Yes, I mean, from Pasadena, California to Colorado Springs, Colorado, there are so many cities in the American West that were essentially founded as tuberculosis colonies, because at the time in the 19th and early 20th century, it was believed that heading west or drier air could sort of dry out the wet lungs of tuberculosis. California called itself the land of new lungs, and the movement of people there rivaled the gold rush. It was a really significant shift in our human geography here in the United States. I also argue that TB was a cause of World War 1. And I should say, like, not the primary cause, but both of the young men who actively participated in the assassination of Archduke Franz Ferdinand were dying of tuberculosis and knew they were dying. And as a result, they really wanted to die for a great cause.

SREENIVASAN: And you pointed out that two or three of the other co- conspirators who didn’t have that kind of tuberculosis death sentence they — well, they chickened out. They didn’t participate.

GREEN: Yes. They bailed on the day. They were — they decided that what maybe wasn’t a good idea to assassinate the archduke, which, you know, obviously given what happened, it wasn’t.

SREENIVASAN: You have been online in the past couple of years really active about thinking about tuberculosis and advocating on its behalf, and you’ve also, you know, been very pointed in your critique of how the pharmaceutical industry works and why this drug that we’ve known about, that this cure that we’ve had for so long is still not accessible to people like Henry.

GREEN: It is very frustrating for me that we have the tools to deal with this disease. It’s not only a problem of pharmaceutical companies, it’s also a problem of governments. It’s also a problem of, you know, our nonprofits being as efficient as they can be. But it’s mostly a problem of governments and developing the tools and making those tools available. And too often we develop tools, but we don’t make them available in the places where they’re most needed. In 2000, the doctor, Dr. Peter Mugyenyi, famously said of HIV, where are the drugs? The drugs are where the disease is not. And where is the disease? The disease is where the drugs are not. And that’s very much the case for tuberculosis. The cure is where the disease is not. And that’s infuriating to me. If we really value all human lives equally, if we really believe that every human life has value, we simply have to do a better job of getting these cures to the people who need them.

SREENIVASAN: I’m assuming for someone like you, you love the unknown fact that kind of makes you think about something differently over and over again. But what were some of the things that you kind of stumbled upon in this that you ended up including in the book, but also, that just kind of changed your frame of reference on how you thought about either the disease or the injustices of the world?

GREEN: There are so many things I’ve learned in this journey that have helped me understand contextualize the way that injustice works in our world and the way that health and equity becomes a form and expression of injustice. I think the most shocking statistic to me is that since tuberculosis became curable, we’ve allowed at least 150 million people to die of it. What does that say about us? What does that say about the world we share and what — how does it point to a world we might share that might be better for those people?

SREENIVASAN: You know, when you talk about the role of government, in the last couple of months, we’ve seen an enormous retreat from the U.S. government in terms of tuberculosis treatment that we help fund worldwide. What do you think the consequences are going to be of these actions?

GREEN: The consequences are already profound, and they will become even more profound over time, unfortunately. The United States has long been the most generous supporter of the fight against tuberculosis and a key ally in every country that’s fighting the disease. In a country like Sierra Leone, you know, the — without USAID money thousands of people are losing access to their treatment. Hundreds of thousands of people are seeing their treatment interrupted, which means skyrocketing risks of increased drug resistance. We know that having drug resistant tuberculosis circulating in communities is very bad news. It’s bad news for individuals, but it’s also very dangerous for social orders as a whole because we can eventually get a form of tuberculosis that no longer responds to the tools that we’ve developed to fight it. That’s scary. That should scare us. And it is devastating to watch this unfold. I mean, I never imagined I would be publishing this book in a time where it’s so timely. I never thought the world would be talking about tuberculosis, but it is. Because unfortunately, the machinery that we use to get TB treatment to people has just ground to a halt as a result of these spending cuts.

SREENIVASAN: You know, so I know that there are drug resistant versions of TB in different pockets of the world. I know in Iran, India, other places that, I wonder, do we have, like, if we start to strip away some of the infrastructure that can even track and trace where explosions of tuberculosis might be happening, then there seems to be an increased likelihood then that there might be more drug resistant strains that actually make their way through communities because we’re not really watching them and we’ve interrupted the courses of treatment that might stop them.

GREEN: That’s a great point and a really important one. It’s not just that we’ve stopped treating people with tuberculosis. We have also stopped counting how many people aren’t being treated with tuberculosis. And so there will be untold amounts of suffering that result from this decision. But in some cases, we won’t understand the full scope of that devastation for decades, because we’ve simply stopped counting.

SREENIVASAN: What was also interesting to me, reading the book, was just the kind of biology of how it worked, which I frankly didn’t really know. But what you point out is really how this thing develops in our body, and how many hundreds of millions of people have it and they just, it’s just latent. And it’s kind of, our body’s decent in keeping it at bay. But for people, some people, that’s not the case.

GREEN: Yeah, that’s exactly right. Tuberculosis divides incredibly slowly for a bacteria, hundreds of times slower than something like E. Coli, because it has this thick fatty cell wall that makes it really hard to penetrate. So it’s both very slow moving and hard to kill. The way our bodies deal with that is by surrounding the bacteria with these clumps of white blood cells that we call tubercles, which is how the disease gets its name. And often those tubercles can hold the infection in check for a lifetime. Usually in fact something like 25% of people in the world right now have experienced a tuberculosis infection, but the vast majority of them will never get sick. We don’t fully understand why people do become sick, but we do know that there are important risk factors that include malnutrition, HIV infection, other health conditions like diabetes. So all of those are risk factors for developing active disease. But a lot of times people develop active disease and we still don’t understand why.

SREENIVASAN: So, what you’re also kind of pointing out is it’s not just the fact that we could get a medicine in, but there’s sort of this holistic approach when you look at what makes a person sick. You’re talking about, hey, if you decrease your chances of HIV transmission or diabetes, you are also going to decrease your chances of dying from tuberculosis.

GREEN: Yes.

SREENIVASAN: Now, those are all kind of big societal issues to wrap our head — arms around.

GREEN: That’s absolutely right. We can’t separate tuberculosis or really any disease of injustice from its biomedical nature and its social nature. Both of those interact. I argue in the book that the way we imagine illness is just as important as the nature of the illness itself, because we are very powerful as a species. And so, how we imagine illness shapes how people live and die of those illnesses. But it also shapes who ends up living and dying of those illnesses.

SREENIVASAN: And so, what do you see, I mean, as a way kind of forward? I mean, obviously, you know, you’re on a book tour right now and you’re talking about this. What do you hope people take away?

GREEN: Well, I hope people feel hopeful at the end of the book, which I know is a little bit hard to come by for a lot of folks right now, but I really wanted to write a hopeful book because I think the story of tuberculosis is hopeful and that it can be more hopeful. You know, the year I graduated from high school, about 2.7 million people died of tuberculosis and last year, 1.25 million did. Now, all of those deaths were needless. But the fact that we’ve reduced the deaths by tuberculosis by over 50 percent since I graduated from high school should be a source of hope for us because that progress wasn’t natural. It wasn’t inevitable. It wasn’t always going to happen. It happened because millions of people, including millions of taxpayers came together to make that happen. And together we accomplish something extraordinary. Now, we can reduce tuberculosis by another 50 percent or 99 percent if we want to, but we have to decide that we want to. We have to decide that we’re going to value the lives of people who are likely to get tuberculosis just as we would value my brother’s life or my life.

SREENIVASAN: And so how do you convince governments, hospitals, communities to take this seriously? Because in a way, obviously the whole world paid attention to Covid as they rightfully should have. But tuberculosis, as you point out, is killing more people on an annual basis over and over and over again, while we just kind of let it drift.

GREEN: Yeah, we accept it, but we don’t have to accept it. I mean, I think that human attention is incredibly powerful. I think that when we pay attention to problems, we are far more likely to solve them. Think of the way that we think of when we started paying attention to, in the rich world, to the problem of HIV, AIDS in impoverished communities. As a result of PEPFAR and other investments, we’ve saved over 25 million lives in the last 20 years. It’s an incredible accomplishment. If we can have a similar support for tuberculosis, we can see similar results. If we fund things like the Global Fund, if we fund things like USAID, if other countries step up and help us in that fight, all of that can come together to lead to a world without tuberculosis. But it does require political will and it requires resources.

SREENIVASAN: The book is called “Everything is Tuberculosis” by author John Green. Thanks so much for your time.

GREEN: Thank you, Hari.