In 'Everything Is Tuberculosis,' John Green turns his attention to a deadly disease
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Hey, it's NPR's Book of the Day. I'm Andrew Limbaugh. When I was a young producer at NPR, I did an interview with a scientist working on grain production. And I said something naive about how, oh, if this works, we could fix world hunger. And he went silent on the other end of the phone for a beat and went...

Uh, no, world hunger isn't a science problem. We have the science. It's everything else that's the issue. I thought about that conversation while listening to today's interview with John Green, author of the book, Everything is Tuberculosis. It's a look at a disease that some people might think of as old timey, but still kills more than a million people a year. And in this interview with Hearing Nose Robin Young, Green makes the point that the science exists to cure TB.

But people are still dying anyway. That's coming up. This message comes from Amazon Business. How can you grow your business from idea to industry leader? Bring your vision to life with smart business buying tools and technology from Amazon Business. Simplify how you stock up to get ahead. Go to AmazonBusiness.com for support.

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Author John Green, the guy behind best-selling fiction like The Fault in Our Stars, which was partly inspired by a young girl named Esther Earle who'd been battling cancer. Well, John has a new book out, which also takes inspiration from a young person named Henry, who also had a disease. For millennia, it was the world's most deadly infectious disease, and it still kills more than a million people every year.

It's tuberculosis. And John Green says, yes, this bacteria has plagued humanity. But in recent years, it's because we allow it to. His latest book, Everything is Tuberculosis, The History and Persistence of Our Deadliest Infection,

John Green, welcome back. Hi, it's great to be with you. Nice to have you here. And this book, oh my goodness, you've packed so much in. Start with your obsession, really, with TB. I mean, it was your wife, Sarah, who said, you think everything is about tuberculosis and tuberculosis is about everything. And you know what? When we read this book, she's right. You are right. You go through the history, including in your own family. A great uncle died of it. That's right.

That's right. My great-uncle Stokes Goodrich died of tuberculosis when he was 29 years old. He was working as a lineman for Alabama Power and Light.

And he died in a sanatorium like so many millions of Americans. Yeah, hidden away. Well, and you cheekily, right, but it's true, New Mexico became a state because of TB, other states as well, in the West because it was thought maybe it was the air that could help people with tuberculosis survive, so they moved there? Yeah, that's exactly right. People would move West trying to get that clean mountain air or that clean desert air. Nobody quite agreed on what the clean air was, but it was definitely out West and

It really rivaled the gold rush in terms of the movement of people and was a big reason why California, for example, called itself the land of new lungs. Oh, man. And it gave us cowboy hats. It did, yeah. One of the many people who went west seeking a cure for consumption was a young hat maker named John B. Stetson who went on to develop the cowboy hat when he saw that the hats out west weren't up to snuff. Yeah. So these are, you know, really entertaining stories, entertaining history. Yeah.

But then the truth about it, it's devastating. It's a bacteria that replicates very slowly, but then sufferers can waste away, you know, consumption, not be able to breathe. I mean, as I was reading some of these passages, I mean, it just is, take a deep breath now, people, if you can, because you can't.

When you're doing your TB. Yeah, one person described it to me as trying to breathe through a straw or breathing into a pillow. It's just very hard to get air. And I remember my friend Henry, who's really at the center of the book, told me once that when people are scared, they take a deep breath and that's how they deal with being scared. But when he was really sick with TB, he couldn't take a deep breath. Yeah.

Yeah. Well, and yet, again, in the history, in the 1800s, the disease was called the flattering malady because it was a sign of someone's sensitive intellectual nature. TB patients also faced stigma. But the thing that you land on that you really want us to know is that tuberculosis exists because we let it, because in poorer countries that can't afford the tremendous medications that we have,

People are dying. And that brought you to Henry, who you met in Sierra Leone. Talk about that, the inequity. Yeah, it's hard to even get your head around the extent of the inequity. But since tuberculosis became curable in the mid-1950s, we've allowed over 150 million people to die of the disease. It's one of the great marks of shame in human history, I think.

In 2019, I had no idea about that. I had no idea that tuberculosis was even still a thing. I thought of it very much as that disease of British romantic poets. But then I met Henry at a tuberculosis hospital in Sierra Leone, a boy who had been living with multidrug-resistant tuberculosis. And when I met him, he was doing okay. But the doctors knew that he wasn't responding well enough to his antibiotics and that eventually the infection would roar back. And unfortunately, he was already on the last line of available antibiotics.

As one doctor put it, that's the point where you put the stethoscope down. There was very little at the time that was believed could be done for Henry. Well, but God bless that doctor because he didn't put the stethoscope down. And tell us a little bit more about Henry because when you first introduced him to us, it's when you first met him, he grabbed your shirt and he's giving you a tour of the facility that he is in with his tuberculosis. You think he's a little kid. He's not a little kid. No, I thought he was nine years old, the same age as my son, Henry.

And then we made our way back to the doctors eventually after he toured the facility with me and they kind of shooed him away. And I thought he was one of the kids of the doctors or the nurses or the kitchen staff or someone. And they said, no, he's a patient.

And he's one of the patients we're really concerned about. And it turned out he wasn't nine, he was 17. He'd just been so stunted by malnutrition and by tuberculosis that he looked much younger. And talk a little bit about that because in his case, oh my God, it's heartbreaking. You will have a worse case of anything, no matter what it is, if you also don't have food, if you also... Yes. Yeah, and so in his case, he didn't have any food. No, he didn't have nearly enough food to recover his health. And this is a common problem with TB survivors.

A lot of the medication needs to be taken with food, and food too often isn't treated as medicine by global health authorities. And so he just didn't have enough food. He was very fortunate that his mom, I saw too, an incredible, incredible woman who's really, I think, responsible for Henry's survival, would bring him food every time she had a chance. And that's a big part of the reason why he's still here with us. But what a soul. I mean, what you thought was this little kid, even if he was 17, the things he would say...

And he takes you around like he's the mayor, you know? Well, he was the mayor of that place. Yeah. And he still is. He goes back a lot and visits with patients there to encourage them. And he's an incredible kid. I say kid. He's, in fact, 25. So I should say young man. Well, he's doing incredibly well. Yeah. This is where it gets complicated. But if you could synopsize, there's drug-resistant TB because of antibiotics, which are a blessing, but also sometimes if you use them too much,

The bacteria can become used to them, resistant to them. But also there are certain lines that are better than others, but they're not affordable in poor countries. I mean, what's the problem? Well, you've identified the problem, which is that we have really good tools to cure tuberculosis, even most forms of drug-resistant tuberculosis. But the drugs are where the disease is not, and the disease is where the drugs are not, as the great Ugandan Dr. Peter Mugeni put it about HIV-AIDS.

Too often, those drugs that are the best drugs in the world are near you in Boston or near me in Indianapolis and not near the people who need them. Yeah. Well, we'll get to what you and others did to jumpstart a change in that. But you write about a young Indian activist. She sued the Indian government to get access to a modern TB drug. She won that case, but it came too late. Her lungs were gone.

She loved your book, The Fault in Our Stars. She read it while she was dying. What did her experience mean to you? Well, it broke my heart. It made me feel like I hadn't heard Shreya's call early enough in my life. And if I'd heard it earlier, her story might have been different and the story of other TB patients might have been different.

But I'm also very grateful to Shreya for everything that she did to make this drug, which is called bedaquiline, available to many more people. As a direct result of Shreya suing her government for access to bedaquiline, today tens of thousands or even hundreds of thousands of people are able to access that drug and

and see their lives saved as a result. Her legacy is rippling through each of those people's lives. Well, when you say, if you had heard her call, I will never play the game Marco Polo in the pool the same way again, because that's how you describe it. You know, someone says, Marco, someone answers Polo, they try to locate each other at night.

You felt like she was calling you, you know, reading your book as she was dying, but you didn't respond. Well, later you did. You and your many fans succeeded in pressuring Johnson & Johnson to lower the price of one of their tuberculosis drugs. They wanted to extend...

patents so that they could keep it to themselves and raise the prices. But in fact, ultimately, there are generic drugs being made, which is what needs to happen to get them cheaper. Paul Farmer, of course, the late Paul Farmer and Partners in Health does such magnificent work, still does around the world. You know, you and he and others pushed companies to lower the cost of a rapid testing technology. You're very humble about your role in this.

But you've invited people to do this with you. What are they called? TB Fighters? Yeah, TB Fighters. You can find them at tbfighters.org, and they're an incredible group of people.

I want to be clear, and you'll say that I'm being humble, but I'm just being honest that, you know, in both those cases, we had a small part to play. But I think, you know, we were happy to play our small part trying to pressure companies to do the right thing, lower their profit margins so that people can access these drugs, especially and diagnostics, especially given that so much of the funding for those drugs was actually paid for.

by us, by the people of the United States or by people living in other countries where public money goes toward drug development. That's really the story of bedaquiline. But Johnson & Johnson had the patent and wanted to evergreen their patent. And through the work of so many different people, we were able to eventually get J&J to abandon all attempts to evergreen that patent. And as a result, the price of bedaquiline is now over 50% lower than it was just a couple of years ago. Well, it is also your book,

even though it was written before what we've been experiencing in the last month, it's a story of USAID. It's the story of why we do this. And to those saying, and we're hearing it, why are we investing in these other countries? Well,

Well, because TB doesn't care about a border, and it's here. Oh, yeah. TB is very much here. There are 10,000 cases of active TB in the United States every year. That number has been going up for the last several years. And TB anywhere is a threat to people everywhere. This is an airborne disease. But I think we also have an obligation to understand that we are part of one human story, that the story of human health is deeply interconnected, that it knows no political borders, and

and that our obligations extend throughout the world. Well, and that people like Henry are worth our attention. And, you know, I just fell in love with them. That's exactly right. I mean, people like Henry are worth our attention. And if we believe, as I think we all do, that every human life has equal value, we must live that belief. We must find ways to live that value. For instance, I mean, my brother had cancer a year and a half ago. And at no point in my brother's cancer treatment, even though it cost over 150 times more to cure Hank than it

cost to cure Henry. At no point did anyone say this is a bad investment or this isn't cost effective. We would never say that to someone like Hank. And so why are we saying it to someone like Henry? John Green, his latest book, Everything is Tuberculosis, the history and persistence of our deadliest infection still with us. John, thank you so much. Oh, thanks for having me.

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