The World Health Organization says nearly 11 million people around the world were diagnosed with tuberculosis in 2023.
In the early part of the 20th century, some number of those patients would have been sent to the Valley for treatment in the dry air. But today, treatment options are in question for some parts of the world, even though TB is a curable disease.
John Green, author of young adult novels, including “Looking for Alaska” and “The Fault in Our Stars, ”has written about this. His new book is called “Everything is Tuberculosis: The History and Persistence of our Deadliest Infection.”
Green became interested in writing about this disease when he visited a TB hospital in Sierra Leone in 2019.
Full conversation
JOHN GREEN: And it was there that I learned that TB is still the deadliest infectious disease in the world. It kills over 1.25 million people per year. And also while there, I made the acquaintance of a young boy who shared the same name as my son, whose name is Henry. And it was really following Henry’s story that taught me so much about tuberculosis and helped me to see the disease in a different light, and made me want to write the book that I ended up writing.
MARK BRODIE: What kind of different light do you now see it in?
GREEN: Well, I now understand tuberculosis as a present tense phenomenon, not just a past tense phenomenon, but also as a disease that really has followed the trails of injustice that we blazed for it. The way we imagine TB and treat TB has not just shaped how people live and die of it, but also who lives and dies of it.
BRODIE: Is there a lot of research going into treatments or prevention of TB?
GREEN: There is a fair amount of money going into treating and preventing tuberculosis, but not nearly enough. I mean, it’s a paltry, paltry amount compared to the burden of the disease. And my brother had cancer a couple of years ago, he had Hodgkin’s lymphoma. And he was very fortunate to receive the kind of personalized, tailored treatment that you or I would expect and that all of us deserve.
With TB, it’s very different. A lot of times people are treated with drugs that are from the 1950s, 1960s. And the newer drugs — of which there are a few, but only a few — unfortunately are generally reserved for extraordinary cases or for people living in the rich world.
BRODIE: Do people in the rich world tend to still get TB? You mentioned visiting a facility in Sierra Leone. I would imagine that there is some economic disparity in terms of who gets this as well.
GREEN: Oh for sure. So we have about 10,000 cases of active tuberculosis in the U.S. every year — which is a lot, and it’s been going up. But it’s a tiny percentage compared to the overall percentage of burden of the disease. So in a country like Sierra Leone, up to 1% of people will have active tuberculosis at any given time.
BRODIE: Wow. That seems like a lot.
GREEN: It is a lot. I mean, 10 million people get sick with TB every year. It’s a lot. It’s a huge, you know, it’s the biggest infectious disease killer in the world. And it’s really horrifying to me that we don’t spend more money, spend more time, spend more attention trying to fight this scourge.
BRODIE: When you talk about money in terms of research, is that money that’s being affected by recent cuts in research grants and things like that?
GREEN: Yeah, I wouldn’t just say it’s been affected. I would say it’s been devastated by it. Research has been devastated, but also treatment has been devastated because so much of — you know, the U.S. has long been the most generous funder of tuberculosis response globally. And so much of that has gone away.
And because it went away in such a sudden and chaotic way, hundreds of thousands of people have seen their treatment interrupted, which is an absolute catastrophe. Most of those people will die of tuberculosis, but also they’ll spread multidrug resistant tuberculosis through their communities because a lot of those people are already under treatment.
We know that if you stop treatment in the middle of your course, you’re very likely to develop drug resistance. And so we’re going to have a lot more complicated cases of drug resistant tuberculosis floating through our communities, which is, frankly, pretty terrifying.
BRODIE: Is the most common form of treatment still just massive doses of antibiotics?
GREEN: Yeah. So you take antibiotics every day, a cocktail of antibiotics for between 4 and 6 months for most cases of TB. And it’s a really challenging process. But it is a curable disease.
BRODIE: Is this the kind of thing that other countries might be able to pick up, either in the research or in the production of medication?
GREEN: I mean, certainly we all benefit from a world where there are more funders than just the United States government. That said, it’s very difficult to imagine any other country picking up the slack here. It’s just too much infrastructure. It was done so suddenly that other countries haven’t really had an opportunity to pick up the slack or to or to take over some of that infrastructure.
Some of the underlying systems that have been key to distributing tuberculosis medications for the last 50 years, it was always assumed that the U.S. government would continue their commitments to do that. And so the sudden upending of that has really been catastrophic for people living with TB.
BRODIE: So is this the kind of thing — and you kind of alluded to this — that we’re going to start seeing cases of tuberculosis on the rise and maybe this disease coming back in a pretty meaningful way in places like the U.S.?
GREEN: Yeah, cases are already going up in the U.S. And they will go up further as the global burden of the disease rises. So I think the most recent estimate is that we can expect in the next two years to see, instead of 1.25 million people dying of tuberculosis, closer to 2 million people dying every year of tuberculosis.
And seeing hundreds of thousands more people die means we’re seeing many millions more cases of TB. And that doesn’t just affect people living in impoverished communities. It affects all of us.
BRODIE: So Phoenix obviously has a kind of an interesting history with tuberculosis in the sense that a lot of folks were sent here in the earlier part of the 20th century. That clearly doesn’t seem to be the way this is handled anymore. But is that sort of model something that other countries are starting to look at as you know research funding is starting to dry up and medication maybe becomes more unavailable or unaffordable?
GREEN: Yeah, that’s an interesting question. I mean, Phoenix has a really fascinating and long history of being a home for consumptive people, a place where people were told to go when they were living with tuberculosis so that they could recover in dry air.
The idea was that the dry air of Phoenix would kind of dry out the wet lungs of tuberculosis. And that doesn’t really hold up to scrutiny, although it is true that rest and adequate nutrition are good for TB. And so any institution that can offer people adequate rest and adequate nutrition is welcome right now, I think.
BRODIE: So I’ve got to ask, because a lot of this conversation has been, frankly, a little bit of a downer —
GREEN: Yeah, I’m sorry!
BRODIE: No, I mean it makes sense. But I’m curious, during the research for this book and with all the folks you talked to, were there reasons for optimism that you found?
GREEN: There are so many reasons for optimism. There are millions of people working together to try to reduce the burden of tuberculosis, and I find reasons for optimism in every single survivor of TB I talked to, because they, in turn, become advocates for other people living with tuberculosis. Like my friend Henry eventually survived his tuberculosis treatment, and today he’s an advocate for people who are patients at the hospital where he was a patient.
And he’s there to tell them, “You can get better. You can get well. This is a curable disease. We can live in a world without tuberculosis.” And I believe that someday we will live in a world without tuberculosis. It’s just, it may be that the time frame has changed a little bit in the last few months.
BRODIE: Yeah. I’m curious: Prior to, let’s say, the beginning of this year, what were folks who were in this world saying is a reasonable timeline for maybe just getting rid of this disease altogether?
GREEN: Some people said 2030. I think the more realistic goals were closer to 2040. But we can live in a world without tuberculosis. I mean, we’ve seen a 99% reduction in TB in the United States, for instance. So we know how to do this. We do it with active case finding. Like in the 1950s, from Arizona to where I live in Indiana, people sent out these mobile chest x-ray vans that offered people free chest x-rays and then gave them free TB treatment if they had TB.
And that’s basically how we eliminated it. So we know how to do this. It’s just that we have to do it at scale, and we have to do it in countries where the rates of TB are still really, really high.
