From Young Adult Romance to the World’s Deadliest Infectious Disease – Writer John Green takes on TB

Maggie Fox  00:00

Hello and welcome to One World, One Health where we chat with people working to solve the biggest problems facing our world. I am Maggie Fox. This podcast is brought to you by the One Health Trust with bite-sized insights into ways to help address challenges, such as infectious diseases, climate change, and pollution. We take a One Health approach that recognizes that we are all in this together and everything on this planet — the animals, plants, and people, and the climate and environment — are all linked.

One sad thing that connects people everywhere is tuberculosis (TB). No one’s ever been fully safe from this most ancient infectious disease. It’s killed kings and race car drivers, poets, and Samurai. It can infect the rich and poor everywhere, but in modern times, it really has become a disease of the poor and disadvantaged. In 2023, TB infected nearly 11 million people, and it killed one and a quarter million people. It’s probably the single leading cause of death from a single infectious disease agent since COVID-19 stopped killing so many people every year.

It’s a problem that has caught the attention of one of the best-loved authors of our time, John Green, his bestselling 2012 book, “The Fault in Our Stars” inspired teens and young adults around the world and was made into a blockbuster movie. Its story of the love between two young cancer patients was both heartwarming and tragic, and now he’s written a nonfiction book, “Everything Is Tuberculosis: The History and Persistence of Our Deadliest Infection.” It’s a serious title, but it’s a very readable look at this killer disease, and John Green joins us on this episode to talk about the book.

John, thank you so much for joining us.

John Green  01:56

It’s a joy to be with you.

Maggie Fox  01:59

You wrote the much-loved book —The Fault in Our Stars, which was aimed directly at young people—older people, too, but mostly young people. Can you tell us about who you saw as the audience for Everything is Tuberculosis?

John Green  02:13

Well, I’m again writing about a young person living with serious illness, in this case, a young man in Sierra Leone named Henry Ryder living with multi-drug resistant tuberculosis, but it’s a very different book because it’s nonfiction and much more historically grounded. So, I would say that I think the audience for this is adults mostly, but teens as well. So, kind of the inverse of the audience of The Fault in Our Stars, which I wanted to be primarily teens, but also adults.

Maggie Fox  02:41

What do you hope to do with this book?

John Green  02:43

I really hope that I can increase awareness around the world’s deadliest infectious disease. I mean, in 2019 I had no idea that tuberculosis is still killing over a million people every year, and it’s infecting and sickening over 10 million every year. So, I think it’s really important to get the word out about that to help us understand that this is a crisis. This is an ongoing pandemic and one that we have the tools to address effectively.

Maggie Fox  03:05

This really is a subject you’ve taken on. You’re all over social media with this as well.

John Green  03:10

Yeah. I mean, you know, when you care about something like tuberculosis, you can’t just care about it in the form of a book or a single YouTube video. It’s an ongoing crisis, and so there are new problems to address all the time, whether that’s the cost of diagnostics or the cost of medication, especially the newer medications that we have, the best tools that we have to treat tuberculosis, unfortunately, aren’t getting to the places where we most need them to get because of cost.

Maggie Fox  03:38

So, one thing about you is your compelling character, and in “Everything is Tuberculosis,” it’s Henry. Without giving too much away from the book, tell us a little bit about Henry.

John Green  03:48

Yeah. So, I met Henry in 2019 when I visited a tuberculosis hospital in Sierra Leone with my wife. Sarah and I have for many years invested in the maternal health care system in Sierra Leone, but we visited this TB hospital just because some doctors needed to check in on some patients.

When I got there, I was kind of just grabbed by the t-shirt of this young boy who shared the same name as my son, Henry, and he looked to be about the same age as my son, who was nine at the time, and Henry Ryder just walked me around the hospital, showed me the lab, showed me the dorms, showed me the kitchen where the food is made. And eventually we made our way back to the front of the hospital where the doctors were meeting, and somebody kind of lovingly shooed Henry away. I asked, “Whose kid is that?” And they said, “That’s actually one of the patients we’re worried about.” It turned out Henry wasn’t nine like I imagined — he was 17. He’d just been really emaciated by malnutrition and by tuberculosis. So, Henry’s journey would be a very long one, and he would need a lot of treatment in order to survive, unfortunately, in Sierra Leone, such treatment usually isn’t available to patients.

Maggie Fox  04:52

Henry, his story is woven throughout the book. There are other interesting characters too, both past and present, because. As you really could not escape tuberculosis. It seems like everybody had it in the past.

John Green  05:04

Yeah, absolutely. I mean, in 18th century Britain and the United States, tuberculosis was killing around one out of every three people, and so it was overwhelmingly the leading cause of death.

Overwhelmingly, by one estimate, one out of every seven people who’ve ever lived died of tuberculosis. So, this is a disease that’s been with us for a very long time and has had a huge impact on human history. And I wanted to pursue and understand some of the ways that it shaped our history.

Maggie Fox  05:31

What originally sparked your interest in TB?

John Green  05:34

I think I care about it because I care about Henry. All the data in the world and all the statistics in the world matter. You know, it matters that this is the world’s deadliest infectious disease. It matters that it’s been curable since the 1950s and since it’s been curable, we’ve allowed 150 million people to die of it. But what really matters is caring about individuals and the human-to-human work that we do as humans. And so, if it weren’t for Henry, I don’t think I could have written this book. I’m very grateful to him for making it possible.

Maggie Fox  06:00

The book is chock-full of other interesting tidbits. You talk about how weird TB is, and how it lies dormant in the body.

John Green  06:08

Yeah, it is a very strange disease. It has a very thick, fatty cell wall that makes it (any particle) really hard to penetrate, which means that usually the immune system responds by surrounding the bacteria in a tubercle, which is a clump of white blood cells, and then the bacteria just kind of slowly survives inside that tubercle, and that allows there to be this almost sense of balance where you’re infected with TB, but you don’t get sick from TB. The vast majority of people who have this — we call a latent TB infection, will never become sick.

But in about 10 percent of cases, eventually, the disease will become active, and it will start to escape these tubercles. It’ll overwhelm the immune system, and then that’s when it becomes an emergency. Active tuberculosis is a huge threat to human health, and once the disease is active, if left untreated, about 75 percent of people will eventually die from it.

Maggie Fox  06:56

Again, in the book, you talk about because of how hard it was to treat some of the crazy treatments people came up with in the past.

John Green  07:03

Yeah, we’ve had a lot of different strategies for treating TB. I mean, obviously, in the history of the United States, many people will know about sanatoriums. At the height of the sanatorium craze, there were as many hospital beds for TB patients as there were for all other causes combined. But also, you know, everything from rubbing badger fat to drinking human milk has been used as a treatment for tuberculosis. Ultimately, this is a disease that has impacted us very deeply around the world, and so we’ve had lots of different responses to it, but it’s only since the 1950s that we’ve really had effective treatments.

Maggie Fox  07:36

Yet, these effective treatments aren’t getting everywhere they need to be, and you have not been shy about pressuring companies to make their TB drugs available generically and just, you know, therefore more cheaply. I wanted to ask you about this because while this podcast is meant to be about solutions, it is really good to see successful people use their influence to make a difference. How have you gone about choosing your battles?

John Green  08:04

Well, I’ve chosen my battles mostly by listening to experts. It was experts who told me that Johnson & Johnson’s attempt to evergreen their patent for the TB drug Bedaquiline would be catastrophic for the ability of people like Henry to afford that drug. It was experts who told me that Cepheid, the diagnostics company was charging way too much for their TB tests which are really miraculous — that can tell you within an hour, not just if you have TB, but what kind of drugs your TB is going to be resistant to. So, I feel it’s important to kind of lead by following, if that makes sense, to listen to the experts in the field. But it’s very frustrating that we have these great tools, but so often the tools do not get to the disease.

In (the early) 2000s, Dr. Peter Ndimbirwe Mugyenyi, the great Ugandan physician, 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 with TB now. I mean, we have better tools than ever to treat and diagnose TB, but too often, those tools aren’t getting where the disease is.

Maggie Fox  09:04

So, what else can companies and governments do to make TB treatment more available?

John Green  09:11

Well, I mean, the first and most important thing right now is that there’s been a total freeze on the vast majority of TB funding in the world.

So, you know, earlier today, I was sent a picture of a warehouse in Kinshasa that’s full of TB drugs that have already been paid for but can’t be distributed right now because of stop-work orders. That’s happening all over the world, and it’s absolutely horrifying. Even a couple of weeks without access to TB treatment can be catastrophic because the disease has a chance to evolve resistance, and then multi-drug resistant tuberculosis is a catastrophe, not only individually because it’s much harder to cure, but also societally, because it means that far more people will be exposed to drug-resistant forms of the disease that we just don’t have the same quality of tools to deal with. So, I think that’s the first and most important thing.

You know, the US government has long been a very generous and really the main funder of tuberculosis response globally, and that has been imperiled over the last few weeks, in a way that is, frankly, quite frightening for those of us who worry about TB, not just abroad, but also here, where there have been over 10,000 cases of active tuberculosis this year in the United States.

So that’s the first and most important thing. But in general, I think attention matters. Where we put our attention matters, we tend to solve the problems we pay attention to, and so the more people who are paying attention to TB, the more likely we are to address the crisis.

Maggie Fox  10:29

This was a problem even before the current political situation. People were paying attention to TB. And you note this in your book as well. This is an ongoing problem. It’s not very profitable to make the antibiotics that treat this disease. So that was a problem. Do you see a solution there, even outside the current political situation?

John Green  10:48

I think the solution has to be a public investment of some kind because we have to incentivize the development of drugs that treat the problems of human health. And you know, in a perfect world, maybe we would completely reimagine the system of drug distribution and drug creation to match the needs of human health to the market, but that’s going to be very hard to do in private markets without public investment. So, the great new drugs we have, such as “Delamanid” and “Bedaquiline,” were all developed primarily with public money and primarily through publicly funded trials and research, and so I just think that’s absolutely essential to solving the TB crisis.

Maggie Fox  11:26

That as you say, what’s going on with the U.S. government right now? Can you overstate how important the U.S. role in all of this is, and what is happening now in Washington, the effect it will have on the rest of the world?

John Green  11:40

It’s very hard to overstate how serious it is. I mean, Bedaquiline, which is now our main tool against drug-resistant tuberculosis, was created and synthesis was funded primarily by the U.S. government.

Delamanid also received a lot of U.S. government funding for research and trials. These often take place in the United States and benefit people living there. I mean, they employ people in the United States. So, the hollowing out of all our research grants and our scientific exploration grants and all that stuff is really quite catastrophic, in my opinion, and it’s going to have a profound impact. We’re going to see a lot more people die of tuberculosis this year, unfortunately.

Maggie Fox  12:16

And I guess you can even look at it selfishly, tuberculosis is an infectious disease. People can bring it to the U.S.

John Green  12:23

Absolutely! Tuberculosis anywhere is a threat to all humans everywhere. This is an airborne disease. It spreads through the air, through coughs and exhalations, and we’re going to see more TB this year in the United States than we have over the last several years. We saw that last year as well. TB has been rising in the U.S., and it’s going to continue to rise. And we’re going to, unfortunately, see a rise in drug-resistant tuberculosis, which is much scarier and much harder to treat.

Maggie Fox  12:47

John, you have a strong relationship with Partners in Health. I think you’re a member of their board of trustees. Tell us about that and how that helps.

John Green  12:55

Well, Partners in Health has been leading the charge on TB since the 1990s when they established that it could be cost-efficient and effective to treat multi-drug resistant tuberculosis in Peru, and they’ve been ever since, treating people with TB around the world. I’m really proud to be a small part of that organization, but it’s a group of 10s of 1000s of people working together to make the world better expand access to healthcare, and build healthcare systems. It’s really, really inspirational to me, the work that they do.

Maggie Fox  13:23

Some people might argue that nonprofits can fill the role of the U.S. government and other governments. Why do we need the government to do this?

John Green  13:30

That’s a great question, and I think it’s really important to address that. There is no way that even an organization like Partners in Health which spends over $400 million a year strengthening healthcare systems, can operate at the scale and with the efficiency that governments can.

I think that’s a really important thing to understand with just less than 1 percent of our tax dollars, governments are able to save vastly more lives than nonprofits ever could.

The example of this that I think of the most is the 25 million lives, including several million children’s lives that have been saved through the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) program, which addresses HIV AIDS and impoverished communities. But around the world there, you know, simply just as government, there are things that governments are good at and things that private industry is good at, and one of the things that government is good at is strengthening healthcare systems.

Maggie Fox  14:16

John, thank you so much for joining us.

John Green  14:20

Thank you for having me. I appreciate it.

Maggie Fox  14:23

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