Season 2, Episode 9: New York Times Best- Selling Author John Green on Global Health Injustice and Tuberculosis

In this episode, Joseph Harris sits down with New York Times best-selling author John Green to talk about his new book, Everything is Tuberculosis. Best known for novels, like Fault in Our Stars and Paper Towns, which have been turned into Hollywood movies, in his latest book Mr. Green turns his attention to a disease for which we have a cure, but which still kills over a million people a year, most in poor countries. They talk about what moved him to write this book, his work on the board of Partners in Health, and his advocacy for addressing global health injustices.

Transcript

Global Health Politics Podcast

Season 2, Episode 9: New York Times Best- Selling Author John Green on Global Health Injustice and Tuberculosis

Joseph Harris: Welcome to the Global Health Politics Podcast, where we go beyond the articles and books and have real intimate conversations with people working in the field of global health today. I’m Joseph Harris. 

Today I'm really pleased to welcome author John Green to the podcast. Mr. Green is the bestselling author of the books, The Fault in Our Stars, Paper Towns, Turtles All the Way Down, and The Anthropocene Reviewed. More than 50 million copies of his books are in circulation globally. In his latest book, Everything is Tuberculosis, he turns his attention to an important global health problem, asking why a disease for which we have long had a cure in TB continues to kill millions of people each year. The book was the number one New York Times bestselling nonfiction book earlier this year and drew a great deal of attention to the problem of tuberculosis in the process. Mr. Green, welcome to the podcast. 

John Green: Thanks so much for having me. 

Joseph Harris: So you're known to many as a wonderfully gifted fiction writer, but you turned your attention in 2021 to the impact humans have had on their planet in your book of essays, The Anthropocene Reviewed. What led to this shift into nonfiction at the time? And how have you found that transition to writing nonfiction?

John Green: Well, I guess the short answer is that I stopped understanding what fiction was supposed to do or supposed to be. I felt like the moment I found myself in by 2021 could only be met with non-fiction. Me writing as myself, I just didn't know what made-up stories could do.  Now, I know as well as anyone the power of made-up stories. I know it in my own life. I know it in my readers' lives. But  I had started to feel like  fiction just felt insufficient to me.  And so I responded with non-fiction. That said, I'm going back to writing fiction now. So obviously, I wasn't done with it completely.  

Joseph Harris: Well, I know your readers will  be excited to hear that you're coming back to that! Your new book, Everything is Tuberculosis, examines the problem of disease that humanity has known for some time in TB. But this obviously isn't the first time you've taken up issues of health and illness before writing your fiction book. The Fault in Our Stars, for example, was inspired by Esther Earl's struggle with cancer. Why did you decide to focus on TB specifically in this book?

John Green: Well, I could have written about any disease of injustice and there are many of them. Malaria is a disease of injustice, HIV is, cancer is...but I wanted to write about tuberculosis because for me it is a barometer  of our ability and willingness to respond to the crisis of health care inequity globally. When more people die of tuberculosis it represents a bigger failure and when fewer people die it represents a smaller failure, I think. Because tuberculosis is not an easy disease to cure it requires months of treatment, daily treatment and that means that we need functioning healthcare systems to deliver those treatments. When we're screening for TB, we're also screening for hypertension, we're also screening for diabetes.  So tuberculosis to me is a marker of injustice  as much as it is an illness itself. I mean, we've known how to  deal with this illness  curatively since the late  1950s, and here we are still losing over a million people of the year to it. That just says so much about the world in which we find ourselves. But I also wrote about TB because of one kid, because I met one kid, Henry Reider, who demanded my attention  on every possible level. And I came home from a trip to Sierra Leone in 2019 having met Henry, obsessed with tuberculosis partly because  it's  a way into understanding what's wrong with the system as a whole but partly because of Henry himself and his extraordinary charisma.  TB has killed over 150 million people and as you know  continues to kill over a million  people per year, about 1.2 to 1.3 million, with the majority of those deaths occurring in poor places where access to treatment and sometimes even diagnostics is limited.

Joseph Harris: And yet you note in the book that the disease was first identified in 1882 and it's been curable since the 1950s and that even in the 1960s, with the advent of two new drugs, there were many who proclaimed TB would soon be eradicated. You just talked about this disease as a marker of injustice.  Why does it continue to persist today?

John Green: Well, it's hard to say that the cause of tuberculosis these days is really the bacterium. I mean, obviously we need the bacterium  in order to have the disease, but I think these days the cause is us, the cause is our resource distribution, our choices around who we treat as a full person in the social order and who we see as being worthy of care. And when we exclude people from the systems we build and we see certain people as being unworthy of care, we end up in a world where people are dying of a disease that we've known how to cure for 75 years. And that's the world in which we find ourselves now. I think it's really complicated. It's a really hard problem to solve. There are lots of smart people trying to solve the problem of tuberculosis in lots of different ways, from better diagnostics to better treatments to better prevention. You know, the dream, of course, is to have a great vaccine for tuberculosis, which we've never had. And I think that we'll get to a lot of those dreams. I think we'll see the tools continue to improve. But we also have to do a good job  of reaching across all the divides that separate us to make sure that those tools are actually implemented and the knowledge we learn together is actually effectively disseminated. And so often that's the biggest challenge, you know, the hard part is not necessarily even coming up with the treatment, although that's very, very hard. The hard part is really implementing the treatment in the places where it's most needed. We've seen that with  the malaria vaccine. We've seen it with TB treatment for decades.  We see it all over global health.

Joseph Harris: And can you talk a bit more  about the differential impact  of TB  on the poor and vulnerable?  Some of our  listeners may not understand that sort of impact or why that's the case.  

John Green: Yeah, so about half of people who develop active tuberculosis this year, about 10 million people will get sick with TB, and about half of them, maybe slightly more, are malnourished.  And that's one of the main reasons why they'll develop active TB. We know that's one of the biggest risk factors. We know that poverty in general is a risk factor for TB.  Crowded living conditions, crowded working conditions  lead to the spread of the disease. Being on crowded public transportation can lead to the spread of the disease.  And so in all kinds of ways, poverty is associated with tuberculosis. Of course, rich people can also get it, it's an airborne disease. I've spoken with generals who got tuberculosis. I've spoken with all kinds of people who have gotten tuberculosis. But it is a disease that disproportionately affects the poor  and it disproportionately affects the poor not because of choices that they're making but because of circumstances that they've been forced into. So my friend Henry Reider, who's really the protagonist of Everything Is Tuberculosis, Henry  was almost guaranteed to get TB  from the  facts of his life, from the fact that he grew up in Sierra Leone in absolute poverty, from the fact that he lived in extremely crowded conditions, from the fact that he was profoundly malnourished.  None of that was Henry's fault, of course. Nobody's at fault for a five-year-old getting tuberculosis except for the systems that failed that five-year-old.  But  it's just devastating to watch the disease continue to unfold and frankly to watch, in many cases, people in my community not care that much.

Joseph Harris: You talked about Henry as being a sort of motivating force in writing the book.  And you just mentioned a little bit about who he is. How did you come to meet Henry? And can you tell us more about his place in the story?  

John Green: Sure. So I met Henry in 2019 when I was traveling in Sierra Leone with my wife and with the nonprofit organization Partners in Health to learn about the maternal healthcare system. At the time Sierra Leone had the highest maternal mortality rate in the world. It's since declined over 60 percent, but it was very high when we first visited. And on our last day there some of the doctors we were traveling with asked if we could visit a tuberculosis hospital and  so  I didn't even know there still were tuberculosis hospitals. I thought of a sanatorium as being, you know, from the 19th century. We visited this tuberculosis hospital called the Lakka government hospital and that's where I met Henry who at the time was seventeen although he looked about  eight or nine because he was so stunted by malnourishment and by the facts of itself. And Henry walked me all through the hospital and showed me the wards where I'd never seen people that sick before. I mean I've worked in hospitals, I've known a lot of sick people through my work and been very fortunate to know a lot of people living with serious illness but I've never seen people that sick before,. and it was a really sobering  thing to witness. And eventually, we got a way back to the doctors and asked whose kid Henry was. I figured he must be a child of one of the health care workers and he was a patient in fact  and that he was a patient they were really concerned about because even though his TB was responding to antibiotics they could tell that it wasn't responding well enough which meant the infection would roar back  and when it did there just weren't many tools available for someone like Henry. And  yeah, I mean following Henry's story over the next four years was really what gave me the book.  

Joseph Harris: And tell us a little bit about the impact that the book has had. Have you, for instance, seen the policy conversation around TB change since its release? What hopes did you have for the book?  

John Green: Well, one always dreams that one's work can have an impact. I think a lot of times you don't see that impact immediately. Maybe that impact will be some kid in Iowa going to medical school when otherwise they might not have, and studying infectious disease when otherwise they might not have, who knows. But  I think the tangible impact of the book is that hundreds of thousands of people hopefully now care about tuberculosis who maybe weren't aware of the crisis before.  We have seen some, I don't attribute this to the book, I attribute this to activism and advocates, but we have seen some successes when it comes to getting TB funding out the door that we're not seeing necessarily for other  diseases in this moment of crisis for global health, especially around the US funding of global health.  I think we're seeing increased attention given to TB,  but  we're a very long way from  TB getting the kind of public knowledge that it needs and deserves,  and that would really, I think, fuel an end to the crisis. 

Joseph Harris: You've been a supporter of the nonprofit Partners in Health founded by the late Paul Farmer since the early 2010s and became a trustee of Partners in Health in 2022. What drew you to the work of that organization initially? 

John Green: I think it was the idea that systems are at the core of what's wrong and that we need systemic change and that especially long-term systemic problems demand long-term systemic solutions. So Partners in Health's model of working closely with governments, not building parallel systems, but trying to strengthen existing systems is very compelling to me. And also, I think to be honest, initially,  we started supporting Partners in Health because we were responding to a crisis, we were responding to the crisis of the 2010 Haitian earthquake, and when I say we, I mean my  family and I. It was over time that we came to understand that just responding to crises, while it is of course very important,  is insufficient.  Because from the perspective of the Sierra Leonean healthcare system,  after the emergence of Ebola  in 2014,  lots of funding  went towards Sierra Leone and Sierra Leone's healthcare system to build out Ebola treatment units and to build out  Ebola surveillance and contact tracing and all of that, and that was effective. and eventually the Ebola outbreak ended in Sierra Leone.  But from the perspective of the healthcare system, when that money left after the end of the outbreak, the healthcare system was actually worse off.  I mean, 10 % of Sierra Leonean healthcare workers  or about that many had died of Ebola. And  there was no  ongoing money, there was no new funding.  The money went to follow the next crisis.  And so, I watched that happen in real time and folks at Partners in Health watched that happen in real time and I just found it unacceptable and so  when PIH said we're staying in Sierra Leone and we'd like to ask you to stay with us, I  have tried to stay with them.

Joseph Harris: And I understand you actually played a leading role in the advocacy campaign directed at Johnson and Johnson to get them to allow generic versions of the TB drug, Bedaquiline, to be produced.  You published two different op-eds on TB in the Washington Post.  Can you tell us a bit about that campaign and have you ever done anything like that before? 

John Green: I'd certainly never done anything like that before and it was extremely intimidating and I want to emphasize that I was a very small part of that campaign. There were a lot of people in our community. My brother and I make YouTube videos, we have for 19 years, and a lot of people who watched those videos were much more active in that campaign than I was and then the work of MSF and Treatment Action Group and Partners in Health and StopTB Partnership and so many other people really came together to make it possible to expand access to Bedaquiline globally.  But I hope we played our role and I thought our role was to be  loud and to pressure Johnson & Johnson, which  does make a lot of consumer products and so they're relatively easy to pressure, to abandon the attempts to evergreen their patent.  Patent law exists for a reason and I understand that and  I'm somebody who's benefited a lot from intellectual property law and so I understand the complexities involved there. Ultimately, you know, Johnson & Johnson had their time with the patent and what was inappropriate from my mind was trying to evergreen that patent and keep Bedaquiline from the people who need it most longer than necessary. And so we asked Johnson & Johnson pretty frankly not to do that and eventually they did abandon their attempts to evergreen the patent. And as a result, the price of bedaquiline has dropped by over 50% just in the last two years. We knew that would happen whenever Bedaquiline went off patent and it's frustrating to me that it took as long as it did but I am grateful that we've made some progress on access to that critical, critical drug.

Joseph Harris: Now you also urge Cepheid, the maker of a TB diagnostic machine, to lower the cost of the cartridges used in Genexpert machines to $5. That campaign led the parent company, Donahair, to reduce the price of one of the more critical tests by a fifth and to commit to making no profit on the sale of that test in lower and middle income countries. Is that right?  

John Green: That's right. Although they haven't released the audit that they promised they would release proving that they aren't making a profit in low and middle income countries and that's something that we would still very much like to see and we're confused why the Cepheid hasn't chosen to release that.  

Joseph Harris: Well, I hope they're listening.  You and your brother, Hank,  have also agreed to pledge a million dollars annually alongside $10 million from USAID  and $11 million by the Filipino Department Health towards the fight against TB in the Philippines. Why the focus on the Philippines and what has the recent dismantling of USAID  and the cuts to US foreign aid meant in the fight against TB.

John Green: Well, let me answer your second question first, which is that the dismantling of USAID has been catastrophic. It's been catastrophic for that particular project, which we are continuing , thanks to the generosity of the Filipino government. We are working with the Philippine government to continue to implement broad screening  and comprehensive care  in two regions of the Philippines. And we're really excited about that project, but without USAID it's going to be much less effective. And then the second thing that I'd say about it is that it undermines the world's trust  in America in a long-term, ongoing way.  We were long seen, and I think we worked very hard to be seen as a reliable partner, as someone you can count on, and to see that  money and the systems that supported so much of global health be dismantled in a matter of weeks led to a loss of faith that will last for decades.  And  that's heartbreaking. It's also heartbreaking to know that more people are going to be eventually  living with tuberculosis or struggling to  access treatment. I have friends in Sierra Leone who are already having to ration their HIV medication,  even though supposedly life-saving  commodities are still flowing because in many cases those life-saving commodities might still be moving, but the trucks that actually deliver them the last mile aren't moving because that work isn't supported anymore. And so I think on the ground it's already being felt in profound ways we probably won't see in the statistics for a couple years, and I hope I'm wrong and we never see it in the statistics but it's really difficult. As for why the Philippines, the short answer is because we were asked, we were asked by the Philippine government to help and the Philippines has the fourth highest rate of tuberculosis in the world, really high  rates especially in certain communities, in marginalized communities, in impoverished communities. And so, you know, we wanted to help and they have a really strong healthcare system in many ways and they really, I think, are deeply committed to the fight against tuberculosis, which is refreshing.

Joseph Harris: As someone who's done work  in South Africa, I'm  familiar with  the problem, not just with tuberculosis, but also multi drug resistant tuberculosis and extensively  drug resistant tuberculosis are sizable problems there. Can you say a bit about that? What concerns or worries do you have  about those issues? Were those also drivers in what led you to take up some of these issues?

John Green: Absolutely, I think if we developed drugs, and we don't have the incentive system to do this i understand that, but if we develop drugs in line with the burden of disease rather than in line with the potential profit of the drug we would have plentiful treatments for tuberculosis, I really believe that. It's not that  new treatments are made out of platinum or that they have to be developed by going to the moon or something right. It's that  there's no  incentive structure to create new lines of antibiotics or new lines of anti-tb drugs that may have different mechanisms because we want those drugs to be distributed rarely. I remember when I had an infection between my eye and my brain in 2007, I was hospitalized and the doctor told me, we're on our last line of antibiotics and that it costs $13,000 a pill. And that is how you do it right, that's how you protect the antibiotic in a capitalist healthcare system, it's by making it cost $13,000 a pill. But of course, you make bedaquiline or another critical TB drug  cost $13,000 a pill, it just won't get distributed. And so the incentive structures are all messed up  when it comes to trying to really  address the crisis.  I worry a lot about multi-drug resistant tuberculosis and extensively drug resistant tuberculosis. I worry a lot about the emerging bedaquiline resistance that we're seeing  because the nightmare scenario is that a strain of tuberculosis that's resistant to all our existing medications  somehow develops. As it is, you know my friend Henry had extensively drug resistant tuberculosis. He took almost twenty thousand pills or about that to be cured from TB. That's astonishing, they had all kinds of health care problems that emerged from the side effects of treatment so we need better treatments. You know, this is a curable disease, but we need to be able to cure it more quickly and more efficiently in people.  And we need to be able to deal with the specter of drug resistance.  

Joseph Harris: Do you see the fight against TB being won anytime soon? And what do you think it would take to do so?

John Green: Well, I think we're in a really interesting moment and a hopeful moment in some ways because new treatments are coming online and we have a vaccine for the first time in decades. We have a vaccine in phase three trials that may provide maybe at least part of the solution to the TB crisis where, you know, the promise, and I'm acutely aware as a novelist of the perils, but the promise of AI is that it may speed up some of our drug development.  It certainly has sped up some of our diagnostics around tuberculosis, especially with AI-assisted chest x-rays. And so  there are moments  where I feel hopeful. I do think that i can live, if i'm fortunate, to see a world where TB is not a major public health problem and where TB is rare and and when it when it gets diagnosed it's  it's almost always treated very effectively and efficiently which is you know the frankly the world I live in in the United States. I think we can see that world throughout the world during my lifetime. I don't know if I'll live to see a world without tuberculosis at all, but  I don't need to live in a world without tuberculosis at all, I need to live in a world where everybody has equal access to TB treatment. 

Joseph Harris: Are there other  global health problems or issues that have caught your attention since you began this work on TB?  And beyond TB, what else should the public know about and what would you recommend they do to make an impact?

John Green: So I don’t live under the delusion that TB is the only important disease or even the most important disease, or at least deadliest infection. You know malaria drives a huge amount of suffering especially among children. HIV still drives a huge amount of suffering, cholera is a profound disease of injustice that we could live in a world without. There are the non communicable diseases you know, cancer causes so much suffering in impoverished communities around the world, impoverished communities here in the U.S., impoverished communities in the developing world in the global south all over. My brother had cancer a couple years ago and  when he got cancer  there was never a question of whether it was cost effective to treat his cancer and yet for many people living in impoverished communities there is a question about whether it's “cost effective” to treat their cancer and so that's an ongoing frustration for me. I think that we need to  reimagine the way we understand  human health. We need to  understand that  healthcare is a human right and we need to build systems that  make that right exist and make it broadly available. I think the first fight is convincing people, people here in the United States, that healthcare actually is a right, that you shouldn't be turned away from a hospital for inability to pay, that we need to build systems that  acknowledge that all human lives have equal value.  But I think extending that out to the rest of the world is is going to be hard work there's no question about it. That said, we've already made progress we've seen that the progress is possible the year i graduated from college twelve million kids died under the age of five and last year fewer than five million did it's the fastest progress in human history and i've lived through that many of us have lived through that and i think that's a real reason to be optimistic. I worry  that the biggest challenge we face is a challenge of attention.  We tend to solve the problems we pay attention to, we tend to ignore and not solve the problems that we don't pay attention to.  And when we are paying attention to the problems of the most vulnerable and marginalized among us, I think our social orders get stronger. And when we aren't paying attention to those problems, I think our social orders tend to get weaker.  And I'm seeing a lot of not paying attention to those problems right now  and it really concerns me.  

Joseph Harris: I know our listeners will want to know  what's up next for you. Can we expect to see more work on global health? And when will you return to fiction and what's on tap in that area?

John Green: Yeah, I mean, this is the work of my life, to be able to work in global health, to try to tell stories around global health and global health equity, to try to amplify the voices of people who are doing the really exciting work in global health. Like that's, that's the privilege of my life. And it's going to be something ongoing. I didn't write the book, Everything Is Tuberculosis, with an eye toward writing a book called Everything is the Beatles or whatever. I'm pretty stuck on tuberculosis and on unequal access to health care more generally. I do want to write fiction though.  I want to go back to writing stories.  I really believe,  I think I said in my book, Fault in Our Stars, that the idea that made up stories can matter is kind of the foundational concept of our species.  And  I lost touch with that for a long time with the idea that made up stories can matter. I lost touch with my feeling that made up stories are important.  And  I'm back in touch with it, which has been really lovely. And I'm reminded of why,  you know, how and why stories make us feel less alone and why we are so deeply reliant upon them. And so I've been writing a new novel. It's about two kids who are in a movie. It's a Hollywood novel, but it's also about trauma and how we survive trauma and the public airing of confession and trauma and all that stuff that's become such a huge part of life and 21st century social internet conversations. So it's been a really fun project to work on and I'm really enjoying it. It probably won't come out for at least a couple more years, but I'm having a good time. 

Joseph Harris: That's great to hear. I can't wait to read it. And what you said about the importance of made up stories really resonated with me and made me think about Paul Farmer's thoughts about the problems of global health being  failures of imagination  and I just really connected nicely to that I thought.

John Green: Yeah, I do believe that, when Paul said that  we have so many failures of imagination, that's so true. When Partners in Health started treating MDR-TB in Peru in the 1990s, it was seen as a terrible use of resources because it cost $30,000 per patient.  And in that sense, it was a terrible use of resources, except there was no reason it needed to cost $30,000 per patient. That was a failure of imagination. Turns out, in fact, just two weeks ago, the Stop TB Partnership announced that curing MDR-TB now costs less than $300 per patient.  We've reduced the price by 99%. And that was hard work. It took a long time. It took too long, frankly. The progress is still insufficient,but the progress is also real.  And that happened because people imagined it might be able to happen because people kept working together to imagine a better world where diseases can be treated more effectively and for less money.  And I really believe that imagining has power. That we can't strictly imagine our way into a better world, but we have to imagine on the path to a better world.

Joseph Harris:  I love that. John Green is the author of the New York Times bestseller, Everything is Tuberculosis, and was named by the CDC as a TB elimination champion last year. John, thank you for joining the podcast.  

John Green: Oh my gosh, thanks so much for having me.

Joseph Harris: This episode of the Global Health Politics Podcast was produced by Joshua Emokpae. Thanks for listening.