The disease we let win

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I recently got on a a video call with the writer of one of the best-selling books of all time.

It's me.

I'm the issue.

I'm the problem.

It's me.

Can you hear me?

Yes, I can hear you.

All right, I got it.

He's having some trouble with his microphone.

The waveforms look good.

All right, we're good.

We're ready to go.

John Green writes young adult fiction, YA.

His main demographic is teens, hence his casual quoting of Taylor Swift lyrics.

He's good at what he does.

You inhabit the minds of young people.

I mean, talk about Unexplainable, right?

Our show is called Unexplainable about unanswered questions in science.

And I mean, like, being a teen, it's very hard to explain.

It's the ultimate unexplainable, man.

It really is.

Like, it's so, it's so strange and overwhelming.

And you're doing so many things for the first time.

So, like, you're falling in love for the first time in a lot of cases, but you're also grappling with grief a lot of times for the first time.

I know I was when I was a teenager.

His books, like Mega Bestseller, The Fault Fault in Our Stars, have brought plenty of readers, even grown-ups like me, to tears.

It's about a 16-year-old girl with terminal cancer and the friendship that she strikes up in a patient support group.

It became a Hollywood movie, which had the best debut for a contemporary drama at the box office pretty much ever.

Bollywood also made its own version.

It struck a chord worldwide.

When people romanticize being an adolescent, I'm always like, no, it sucked.

It's very hard.

It's intense.

There's something wondrous about the intensity of it, but

it is very difficult to go through those things for the first time.

You're asking those big questions about meaning and the universe independent from your parents for the first time.

And why is suffering unjustly distributed?

Why is there evil in the world?

How have we built such wildly inequitable human systems?

That's something I really admire about teenagers, actually, is the way that they grapple with those big big questions in such a raw, honest, forthright way.

But the reason I sat down to talk to John is not his teen fiction.

I wanted to talk about his latest work.

It's his first full-length nonfiction book, but it asks a lot of those same big questions, this time about one of the oldest and deadliest diseases in human history.

The book is called, Everything is Tuberculosis.

What drew you to TB?

Like, what's the origin story of this book?

Well, I was in Sierra Leone in 2019 to learn about maternal mortality there.

My wife and I have been working for many years on maternal and child health in impoverished communities.

And we were asked to visit this TB hospital.

And I was surprised to learn that there were TB hospitals.

Like, I was a little surprised to learn that tuberculosis was still a thing.

I thought of tuberculosis as a disease that killed 19th century romantic poets, not as a present-tense phenomenon.

And so I went to this hospital and the moment we arrived there was this kid he looked to be about nine years old he looked to be about the same age as my son and he he literally grabbed me by the shirt and while all the doctors went off and started doing doctor things this kid just walked me around this hospital what is happening guys you're watching me for the first time my name is henry henry is also himself a youtuber these days please make sure you subscribe and share you're not a good youtuber julia unless you uh always take an occasion to tell someone to subscribe to your YouTube channel.

John would know.

He too is a prolific YouTuber.

So go subscribe to Henry's YouTube channel.

Henry Ryder, YouTube, R-E-I-D-E-R.

You can see that we are in the Lac Hospital.

You can see the building.

These are the patients over there.

So we're walking all around this hospital, Henry and I.

And I tell him that my son is named Henry.

And he smiles.

And I figured he must be like the kid of a doctor or a nurse or something because he seemed like the mayor of that place.

Everywhere he would go, people would rub his head or shake his hand or give him a high five.

And eventually we make our way back to the doctors and they kind of laughingly shoe him away.

And I say, whose kid is that?

And they say,

he's a patient.

Henry wasn't nine years old like my son.

He was 17.

He was just so emaciated by childhood malnutrition and then by tuberculosis that he looked much younger.

And I said, is he going to be okay?

And one of the doctors looked at me like,

what universe do you live in?

Let's imagine you are in a situation where one morning the doctor wake up and told you that the dogs are not working.

How do you feel?

One of the doctors said, we're really concerned about him because even though he's currently responding to the second line drugs, we know that he's not responding well enough.

And so we know that the infection is going to come back.

So John Green started reading up on tuberculosis.

And then I find out that tuberculosis is curable.

Like we lose 1.3 million people a year to tuberculosis, and it's curable.

We know how to lose no one to tuberculosis.

And so I came home from that trip just obsessed with tuberculosis because I wanted to understand what was wrong with the world that we were allowing a curable disease to kill over a million people every year.

On today's edition of Unexplainable Book Club, John Green's book, Everything is Tuberculosis.

Howe has one of the oldest diseases recorded in human history, one that's curable, how does it continue to kill the most people every year?

Why?

There are so

many things about the disease that we just don't understand yet.

Every time I meet with a tuberculosis researcher, I emerge with like three or four answers and like three or four hundred new questions.

I'm Julia Longoria.

This is Unexplainable.

If you were to think about, I don't know, like the subjects of your YA novels, like, I wonder, do you think of TB as a character in your book?

I do.

Yeah.

I do think of TB as a character and like such a wily one, you know, a little,

a little trickster,

always, always trying to evade our tools for fighting it.

You know, the ancient Chinese said this is a disease that acupuncture won't work on, and so

good luck.

And Hippocrates, he said that you shouldn't even bother trying to treat tuberculosis because it'll make you look like a bad healer.

You know, I mean, there was an awareness that it was just a very, very difficult disease to treat or cure.

Like, I see the history of tuberculosis as this very long staircase that we've been walking up since we first discovered this disease.

And for the vast majority of human history, we were essentially on the first step of that staircase.

We didn't know anything about the disease.

And yeah, what is tuberculosis in its basic form?

Yeah, it's...

It's a back.

That's a great question.

It's a bacterial illness, and it's really weird because the bacteria

replicates very, very slowly for a bacteria because it has to build this complicated, fatty, very protective cell wall that makes it hard to penetrate and kill.

And because TB kind of co-evolved with us, it's probably been part of the human story since before Homo sapiens were part of the human story.

Because it's been around for so long, it has really developed an ability to coexist with humans and to kill us very slowly that makes it almost the perfect predator.

Why have we not eradicated this disease?

Like, it's old, it's slow.

Like you say, you'd think we would have caught up to it by now if it's so slow moving, but it's like slow and steady has won the deadly race, I guess.

Yeah, it's actually really advantageous that it's slow.

It gives it much more time to spread.

It gives it much more time to make us sick, makes us sick for longer.

I think the average person with active tuberculosis spreads the disease to between 10 and 15 people per year of infection.

And like sometimes people are sick for many years.

There are good reasons why we haven't eradicated it, but then there are the terrible reasons.

And yeah, I was really fascinated by your approach to answering this question of like the sort of slow motion

catastrophe over the years.

And you talk about the mythology around this disease and how that might have kept us from finding an answer.

Yeah.

Well, because tuberculosis is such a weird bacterial infection, it wasn't obviously contagious.

In a lot of Northern Europe, especially, and in the United States in the 18th and 19th centuries, tuberculosis was mostly seen as an inherited condition, as a genetic disease.

Because we didn't call it tuberculosis, right?

Yeah, we called it consumption because it seemed to consume the body, so it was called consumption.

And so it made sense to these folks that, like, if you inherited tuberculosis, you also inherited other traits, which is that you were also born with a tremendous sensitivity to the beauty and suffering and temporariness of everything in the world, right?

Which made you a good poet, for instance.

When people had consumption, they were seen, women especially were seen as very beautiful because it shrunk the body, made the body kind of frail, and this was this became a beauty standard.

Women would apply rouge to their cheeks and paint to their lips to kind of mimic the fever that people with consumption would have where their skin would become very pale and their cheeks and lips would become quite red.

I remember reading lots of Edgar Allan Poe in college and sort of this image of the woman sort of like sallow-faced and ethereal.

Big sunken eyes, that whole Tim Burton aesthetic of the very pale skin and the rosy cheeks.

Those are the classic symptoms of consumption.

And for men especially, but also to some extent for women, it was seen as a disease that made you brilliant, made you a wonderful poet,

you know, made you uniquely sensitive to the fate of the universe.

Wild.

When Keats was dying of tuberculosis, the great English poet John Keats, when he was dying, his buddy Percy Shelley wrote him a letter that said, well, you know, this consumption does tend to strike people who write great verses as you have done.

And so it was understood as a disease that made you, created a creative flowering, even as it created this bodily wilting.

So people were like, it was almost this,

I don't know, like this desirable thing to happen away.

Yeah.

Yeah.

Yeah.

And I mean, I write a lot in the book about why that was because it is so weird, right?

You certainly didn't see

HIV romanticized.

You certainly don't see tuberculosis romanticized these days.

The argument in the book I make is that the reason it happened was that you couldn't stigmatize it away.

That's usually what we do with illness, right?

We stigmatize the sick, telling them that somehow their illness is their fault.

But with TV, like one in three people were dying of tuberculosis in the United States and Northern Europe in the 18th and 19th centuries.

It killed the richest man of the 19th century.

It killed kings.

It killed queens.

It killed everybody.

And so if you can't stigmatize a disease away because it strikes the rich as well as the poor, we romanticize it.

You find a way to say that instead of saying these people are less than human, you find a way to say, well, maybe they're more than human.

I absolutely think that the romanticization of TV slowed us down in terms of our understanding of the disease.

It's almost like we didn't want to get rid of it deep down in our collective hearts.

Right.

And well, and certainly we thought like, well, this is just the world as it is, and there's nothing that you can do about it.

It's the providence of God, not the will of man, that decides who gets consumption.

And so it didn't become a disease that we could intervene in, at least in Northern Europe, until it became an infectious disease and we understood that it was caused by a bacteria.

And then everything changed.

That's after the break.

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It's almost like there are two different diseases.

There's the disease of consumption, which is an inherited condition that makes you beautiful and brilliant.

And then there's the disease of tuberculosis, which is an infectious disease that is marked by filth and contamination.

And so

very soon after Robert Koch identified the infectious agent that causes tuberculosis, the disease started to be imagined very differently and understood very differently.

It was seen as an illness of the marginalized, and increasingly it was also a racialized illness.

So in the days of consumption, it was widely believed by many white doctors that colonized and indigenous and black people couldn't get tuberculosis, that they didn't get the disease at all, because how could they get it?

It was a disease of civilization.

It was pale.

Pale, sallow, ethereal, fashionable people.

Exactly, exactly.

To believe that tuberculosis or consumption could strike

these

colonized people would undermine the entire argument of colonialism itself.

And then after we understood that it was infectious, that changed dramatically.

And white supremacy began to hold that colonized and enslaved people, that there was something in their racial identity uniquely vulnerable to tuberculosis.

Now, I will say that we made a lot more progress in this period.

Between 1882 and 1940, the beginning of the antibiotic age, we made some significant progress.

We developed a vaccine.

It's not a very good vaccine, but it's a vaccine for tuberculosis.

And then also, we were using infection controls for the first time.

So there's a poster that I reprint in the book that said, like, don't kiss babies, because it was believed that kissing babies could give them tuberculosis.

Your kiss of affection means my infection,

the poster said.

And so, you know,

we were coming up with some strategies, including the sanatorium.

The rise of the sanatorium was in the 1890s into the 1940s.

These places where people would be sent with consumption and would, you know, hopefully recover through rest and proper nutrition, which are good treatments for tuberculosis, but also insufficient treatments.

And it's a really interesting place to me because one scholar called it too hospital-like to be a prison and too prison-like to be a hospital.

A lot of times, kids would be put in sanatoria when they were three or four years old, and they would spend their entire childhood inside of this place.

By the time they were adolescents, they'd really only known this very strange life of being forced to rest many hours a day, of being told they couldn't cry for fear of exciting emotions, being told they couldn't be visited by their parents for fear of experiencing extreme emotion, which was seen as detrimental to their health.

And so they just grew up in really unusual circumstances, and yet they found a way to express their full humanness.

They created newspapers, they created radio stations, they fell in love in difficult circumstances where they would lose their partner or their friend to tuberculosis.

It's a really interesting place.

I write about it in the books on, but I would love to return to it someday in fiction.

But I don't think I'm

I'll be honest, I don't think I'm quite old enough to write historical fiction yet.

I don't think I understand enough of history.

Interesting.

I like that idea that you'll, when you grow up, you can write some historical fiction.

When I grow up, I'll write my sanatorium novel.

And so, you know,

we were coming up with some strategies, including the sanatorium, for removing people from the social order who had tuberculosis to slow the spread of the disease.

And all of that worked because it's important to note that like we were we were investing a ton of money and resources into tuberculosis because rich people still got tuberculosis.

It was really only when it became a disease of poverty that we stopped paying attention to it.

And when would you say that happened?

I would say that happened once we had a cure for TB.

The cure is antibiotics,

these drug compounds that target bacteria and kill them.

We found the first antibiotic, which was called penicillin.

We found penicillin, just casual.

Yeah, yeah, the old, the old penicillin.

You've heard of them.

And so the first patient to receive penicillin, whose daughter is still alive, that's how recent penicillin is.

But with the arrival of penicillin, people got really excited, obviously, for good reason.

So between 1945 and 1965, we developed seven or eight different classes of drugs that could fight TB.

And people who'd been on their deathbeds in these sanatoria were miraculously cured by these new antibiotics.

I mean,

it was an absolute golden age of confronting the tuberculosis crisis.

Unfortunately, we did not extend these tools to the world's poorest people and the world's most marginalized and vulnerable communities.

And as a result, as a direct result, we ended up with an explosion of TB in those communities because nothing was being done to respond to the disease at all by colonial authorities.

And just to understand how profound this was, between 1965, when we developed that seventh or eighth class of drugs to treat TB, and 2012, we developed no new drugs to treat tuberculosis.

So it just fell off the concern list of humans in the rich world, largely because it stopped being a profitable disease to treat and cure.

And as a result, we just lost decades in the fight against TB.

Yeah, what is the chapter of the TB story that we're in right now?

Unfortunately, this is a bad chapter.

So the U.S.

has long been the main funder of tuberculosis response in partnership with governments around the world, but we have made choices that result in far more people getting tuberculosis and far fewer people having access to treatment.

And that's just the reality.

You're talking about the cuts to USAID.

Yeah, yeah.

I mean, cuts to USAID, cuts to NIH, cuts to CDC.

All of this has affected the ability of people to access their treatment.

The problem is that a lot of the work that the U.S.

was funding was the kind of background work.

I'll give you one example, like the truck that took the drugs from the warehouse to the clinic.

Very early on in this crisis, a friend of mine sent me a picture of a warehouse in Kinshasa where drugs that we'd already paid for were just rotting because there was nobody to take them to the clinics and the patients where they're needed.

Wow.

You know, the most recent estimate I saw is that within five years, instead of 1.3 million people dying of tuberculosis, we're looking at a world where 2 million people die every year of tuberculosis.

And the idea...

of like looking at that graph in the future and seeing it regress, seeing those millions of people die who we know don't need to die, it just infuriates me.

If you think of the history of tuberculosis as that long staircase that starts out with Hippocrates saying, don't even bother treating TB and ends with

walking up the staircase and finding a way to cure this ancient disease, we have fallen down the staircase.

Ultimately, in the 21st century, you can't say that tuberculosis is caused by a bacteria.

It's caused by us because we know how to kill the bacteria.

It's not easy to kill.

Maybe a sinus infection takes seven to 10 days of antibiotics to cure.

With TB, we're talking about four to six months of antibiotics taken every day in a certain order, and that's with the newest drug regimens.

It's not easy to cure, but lots of diseases aren't easy to cure that we still cure.

Welcome, welcome, welcome to my channel.

My name is Henry.

My friend Henry, in order to be cured from TB, he took medicine for years, every single day.

In the course of his TB treatment, he took more than 20,000 pills.

Since I entered the hospital,

hope was lost.

So Henry had a very complicated case of drug resistance.

So we have these four drugs, all of which are from the 1940s, 50s, or 60s, that we use to treat most cases of tuberculosis.

Some cases will be resistant to one or more of those drugs, and then it gets complicated.

So the reason Henry developed drug resistance, we don't know for sure.

It's another unexplained thing.

Sometimes people have drug-resistant TB from the beginning, but in Henry's case, it most likely happened because he had TB when he was five or six years old and he received some treatment and then his treatment was interrupted because his dad took him off treatment and said, this is not a disease for the doctors.

This is a disease for faith healers.

And

I write in the book about that decision because it, of course, troubles me.

I wish he'd made a different decision.

But at the same time, I have to see this this from Henry's father's perspective and understand that, you know, Henry's father was living with a healthcare system that had never given him a reason to trust it.

But it's very, very common when people see their treatment paused that they develop drug resistance.

And that's probably most likely what happened to Henry.

And as a result of that,

when he got sick again and they came back and treated him with those same first-line drugs that had been working fairly well before, suddenly they didn't work anymore.

And my friend Thompson passed away.

Henry knew that these drugs were failing, and his roommate at La Caw Government Hospital, who had a similar form of drug resistance, died of tuberculosis.

His name was Thompson.

Let us have one silence

for my friend.

When Thompson died is really when Henry started to believe, as he told me once, I am next.

And over the next few years, I thought about Henry often and would reach out to folks at Le Caw and hear updates and stuff.

But I didn't see him again until 2023.

So four years later, I got to go back to Sierra Leone

and I got to go back to La Ca.

And by this time, I'd been reading and writing about tuberculosis obsessively for almost four years, ever since I got home my first question was how's henry and one of the nurses said oh he's here he wanted to see you my name is enui

you can see the difference now

it's a good difference in the world out comes this young man who looks utterly utterly different from the last time i'd seen him when he looked like a little boy and he gives me a huge hug and i find myself in tears immediately.

And what I learned is that Henry, as a result of an extraordinary effort by Partners in Health, the great NGO, and also by his doctor, Dr.

Jeroum Tefera, Henry received this highly personalized, tailored treatment that was just for him and that worked.

Dr.

Tefera worked with the Ministry of Health and with an organization called Partners in Health to say, look, this kid is curable.

We just need to get him like a very specific set of drugs, many of which are not available in Sierra Leone at all.

They're the newest drugs, they're expensive, they're whatever, but like we can cure this kid, and he could be the first of many.

He could be the first kid who survives this level of drug resistance in Sierra Leone, but he doesn't have to be the last kid.

I'm so happy to be among my people, among the worldly kids.

And today Henry is a college student at the University of Sierra Leone.

He just started his senior year a couple weeks ago.

I see the subscribers.

I see your turn up on my channel.

I'm so happy.

Thank you to you all.

Thank you very much.

I'm so happy.

I had a TB researcher say to me once, like, the problem with TB is that it's not sexy.

And I was like, used to be.

But yeah, I mean, on some level, I think that's probably true that like, you know, we think of TB as a solved problem in the rich world because it largely is a solved problem.

I mean, we have 10,000 cases of active TB in the United States every year.

So it's not that TB doesn't exist in the United States, but again, it tends to strike the most marginalized, the most vulnerable, the most impoverished people, and the people who are least likely to make themselves heard.

I wonder if when you were learning about this, like

maybe I'm naive, but I am kind of

struck by how just how

this disease is and our ability to fight it is determined by like social factors instead of like the biological ones.

Like, did that surprise you?

Yeah, I really wanted to tell a science story.

I wanted to tell a story about bio medical lenses through which to view disease and how completely good they are and how sufficient they are and how other lenses just don't work.

And then as I was researching it, I just came to understand that how we imagine illness is extremely important and the changing ways we've imagined tuberculosis is extremely important.

And there's no getting around that.

There's no easy solution for that.

I felt like I had to write about the so-called social determinants of health because they are a huge factor in not just how people live and die of TB, but also who lives and dies of it.

You can learn more about the history of tuberculosis in John Green's book, Everything is Tuberculosis.

This episode was produced by me, Julia Longoria, with editing by Meredith Hodenat, who also runs the show, mixing and sound design by Christian Ayala, and music by Noam Hasenfeld.

Jorge Justin and I are editorial directors, and Bird Pinkerton's voice shook as she struggled to confront the platypus.

You betrayed me after everything I did for you.

Why?

Thank you, as always, to Brian Resnick for co-creating the show.

And if you have thoughts about the show, send us an email.

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