Special Episode: John Green & Everything Is Tuberculosis

have got such an incredible lineup so far. For a sneak peek of some of the books that will be featured on upcoming episodes, or to check out the ones that we've covered in past seasons, head on over to our website This Podcast will Kill You dot com, where you can find a link to our bookshop dot org affiliate account, which has all sorts of TPWKY related lists, including a book club list. I'll be updating that list throughout this season as I add more books to the

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reason we're here. John Green's Everything Is Tuberculosis. I know that many of you out there, like me, have been eagerly awaiting this book's publication, and let me tell you that it is well worth the wait, and its arrival could not have come at a better time, as tuberculosis cases surge across the globe amidst massive funding cuts to

global health programs such as USAID. In Everything Is Tuberculosis, Green, award winning, internationally best selling author, famous YouTuber, and excellent science communicator, takes a panoramic view of this fascinating and deadly disease, linking its biology and history with the perception and prevalence of tuberculosis today. For many of US, tuberculosis may conjure up Charles Dickens or long abandoned sanatoriums in Upstate New York. But as Green describes, tuberculosis is far

from a disease relegated to the past. Despite the fact that curative treatments for this disease have existed for decades, hence those sanatoriums being abandoned, tuberculosis remains a significant contributor to morbidity and mortality around the world. This is a disease caused by a microorganism, Mycobacterium tuberculosis, but it's also so much more than that. Over the centuries, people have ascribed various meanings to tuberculosis, each of which carries the

significant burden of othering. It has been used to romanticize and stigmatize. It has changed the course of history in untold ways, and it stands today as a deadly consequence of how the global health care decisions that are driven by profit lead to unnecessary death and suffering for millions of people around the world. Through his heartfelt and incisive writing, Green demonstrates the human cost of tuberculosis and how intervention

is not only possible but necessary. It was an absolutely surreal delight to get to chat with John, and I am very excited to share our conversation with you all, So let's get right to it after this short break. John, thank you so much for joining me today. I really can't tell you what a thrill it is to get to chat with you.

still a thing, right. I hadn't listened to enough of the pod, so when we got to the hospital, I was immediately grabbed, like physically grabbed by the shirt by a boy whose name was Henry, which is also my son's name. And this boy appeared to be about the same age as my son, who was nine at the time,

and this boy started walking me around the hospital. Most sier Leonians are multi lingual, but Henry spoke particularly good English for a young child, and so I was able to kind of talk with him and enjoy the conversation with him. And he took me to the lab where he showed me a microscope and told me to look

for TB bacteria in the microscope. He took me around the wards, he took me to the kitchen where the food was being made, and then eventually we made our way back to the entrance of the hospital where the doctors were meeting, and one of the nurses sort of lovingly showed him away, and I was like, whose kid is that? Is that like a doctor's kid, and they were like, no, that's one of the patients we're really worried about. And it turned out he wasn't nine years old,

he was seventeen. He'd just been so emaciated, stunted by mountnourishment and then emaciated, further emaciated by tuberculosis. And it was really through meeting Henry and knowing Henry that I came to be interested in tuberculosis. I came home after that trip and just started reading voraciously about the disease, trying to understand how there'd been this massive hole in my understanding of the world around me.

like how did we allow this to happen? And later in our conversation, I do want to touch on more of like the details of that, but like, broadly speaking, can you kind of take me through what are some of the major drivers in allowing that number to grow every single year?

and so it's it's a hard disease to cure. But my brother had Hodgkin lymphoma a couple of years ago, which is also a hard disease to cure, but curable, and there was no question as to whether or not he would receive treatment, or whether or not we would

do a good job of getting him treatment. Doctor Peter Mugeny, this great Ugandan physician, said in two thousand of HIV drugs, which were still not getting to where they were most needed at the time, he said, where 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 still the case with tuberculosis.

major force that is shaping historical events. I've wondered this so much, like why is that? Why do we not consider the role of an infectious disease in shaping history?

an uncomfortable thing to live with. So I speculate in the book that maybe the reason we continue to spread the rumor that Alexander the Great died by poisoning when he almost certainly died of malaria or typhoid, is that we just don't want to reckon with a world where where the most powerful person on earth can be killed by a tiny bacteria or virus.

war torn regions. You can't look at these diseases or these factors leading to disease individually, which is a point that you bring up in your book, that we can't look even at tuberculosis through these narrow lenses. That being said, I'd love to ask you about a few specific influences that tuberculosis has had throughout history, especially on the granting of statehood and early twentieth century global politics.

it needed to attract more white residents. And the way that it did that was making itself sort of a advertising itself as a great place for people with consumption to come and recover. Had the dry air, it had the sunshine, and at the time we believed that sunshine and dry air would sort of heal the wet lungs

of consumption. And so by I think by nineteen hundred, about ten percent of all people living in New Mexico were tuberculosis patients, and there were enough of them that Congress eventually acknowledged that New Mexico should become a state in accordance with its desires, and that's how, or one of the reasons why New Mexico became a state in the first place. Then you have something like World War One. You know, I think you're so right that every war

is shaped by disease. The Franco Prussian War was shaped in part by the fact that one side had access to antiseptics and the other side didn't, and so, you know, injuries that were utterly unsurvivable five years earlier were suddenly survivable. But with TB in particular, I'm fascinated by the role that TV played in World War One because all three of the assassins who sort of semi succeeded in killing the Archduke Frans Ferdinand, knew that they were dying of consumption.

They were all quite sick, and they knew that they were dying, and they wanted to die for a great cause, as young people often do. And they thought this great cause was the nationalism of their community being able to be a nation independent of the Austro Hungarian Empire. And

that's why they assassinated the Archduke Franz Ferdinand. All three of those boys, they were nineteen, and I think all three of them were nineteen died within a couple of years of tuberculosis after assassinating the Archduke.

he recovered. So about twenty five percent of people, for reasons we still don't really understand, recover spontaneously from tuberculosis. One of the things that made it such a difficult disease to deal with societally was its unpredictable and is its unpredictable course? And so John recovered and as he recovered this hat, this young hat maker noticed that the

hats in the West weren't very good. There were the kind of coonskin caps that were bug infested and gross, and then there were straw hats that folk from Mexico and Texas had brought up to Missouri, but those didn't hold up particularly well in the rain. And so eventually John B. Stetson invented what we now know is the stetson or the cowboy hat.

And that meaning seems like it varies a lot depending on how the disease is transmitted, who's affected, or what the disease looks like like on the outside, something like plague compared to tuberculosis, for instance, And for a long period of time, tuberculosis, as you discussed, was romanticized. Why was such a devastating disease seen this way?

started to get it. In the late eighteenth century in England, about a third of all people who died died of tuberculosis. About a third of all death was caused by TV.

And I think one of the ways we made sense of it was through stigma, and another way we made sense of it was through romanticization. And it's easy to think of those things as opposites. One dehumanizes someone, one argues that someone is sort of like more more than human, more beautiful than is possible if you're a regular human.

But they're really alternate ways of othering the sick, you know, just kind of creating a world where the sick exists that isn't the so called normal world or the healthy world or whatever. And the romanticization of tuberculosis was so intense in Northern Europe and the United States that it's really hard to overstate. It was really really weird. Looking back on it, it feels weird to us. Men were said

to become geniuses because they had tuberculosis. I think I write in the book about when Shelley found out that Keats had tuberculosis. He was like, well, you know, this is a disease that affects people who write good verses as you have done, which I think is especially funny or sad or whatever it is, because Shelley also had tuberculosis, and so he was kind of like patting himself on

the back, even if he was complimenting Shohn Keiths. But also like for women, it was seen as this disease that made you really beautiful, you know, it made you very pale, and whiteness of the skin was really kind of worshiped at the time. It gave you rosy cheeks, and so people would use rouge to try to affect the same outcome as tuberculosis. It gave you big sunken eyes, and so people would apply belladonna to their eyelids to

make their pupils look appropriately tubercular. And I think all of this was an attempt to make sense of the crisis, an attempt to just deal in some way with the fact that an overwhelming number of people were dying young.

died of tuberculosis. This is so it's so fascinating because in contrast with other infectious diseases during that time, you know, in the pre antibiotic, pre an acceptive, pre vaccine era, they the spread was so different too, you know, plague tour through a community caller, a tour through a community, typhus, all these things, and to some degree or another, maybe they weren't quite as what does Dick and say, they

weren't quite as wealth never warded off. But at the same time, like, how do you think that that played a role the way that tuberculosis spread so insidiously in a way.

think the burular spirit. And one of these personality traits was that you were very sensitive, if you're a very deep thinker, you were attuned to the suffering in the world, and you were also quite quite beautiful and wispy. This idea that as the body shrank, the spirit grew was

very powerful at the time. But because it was seen as hereditary, as opposed to a disease like cholera or typhus or plague that would just tear through a community, and even if it wasn't quite understood to be infectious, it was certainly understood to be something weird and not inherited.

That changed the way that consumption was imagined in the eighteenth and nineteenth centuries, which is why it was such a big deal when Robert Coch discovered that tuberculosis was in fact caused by a bacteria like cholera, like anthrax, like the other diseases that were coming to be understood as infectious.

she's very pale. The great actor Eliza Poe, who was Edgar Allan Poe's mother, looked stereotypically tubercular and was sort of worshiped for her beauty. And you see it a lot in poetry. I mean, Keats writes about youth growing specter, thin and dying, which is of course precisely what happened to him when he was just twenty five years old. And so I think from poetry to visual art to theater. Tuberculosis played a huge role in shaping the both what we sort of thought of as beautiful but also what

we thought of as very fragile. You know, at the time, we really associated beauty with a kind of fragility, of fleetingness, you know, that the idea that maybe you won't be in the world for very long, but you'll be very beautiful while you're here. Victor Hugo, I remember his friends would joke with him that he would become a great novelist if only he got tuberculosis. That's how much it was believed that this disease made you a great artist.

mortality of their friends and family. What did that And I know that tuberculosis is one part of this, but what did that look like and how did that sort of lead to people creating these concepts or perceptions of what an ideal death should be.

you were supposed to be relatively healthy. You were supposed to be in the prime of life, and consumption often killed people in that prime of life, which made it really hard to make sense of and I think especially devastating for families. And so I'm convinced that when we do not have an answer, we find one, we make

one up. And I remember my dad had cancer twice when I was a little kid in the nineteen eighties, and people would tell my dad that it was commonly believed at the time that cancer came from bottling up your feelings. I mean, people told my dad that, you know that he got cancer because he hadn't been expressive enough about his own emotions. And that's us trying to find an explanation for the unexplainable. And I think that happened a lot with consumption in the eighteenth and nineteenth century.

for blame and stigma and shame. And so you touched on this a bit with a conflation of tuberculosis and whiteness. How was the prevailing assumption of tuberculosis as like a white man's disease shaped by colonialism and white supremacy.

penetrated our understanding of disease as well. And so, you know, Frank Ryan writes very movingly about how tuberculosis in black and brown people was considered to be a different disease, a disease that was not even given a name, which speaks, i think, both to healthcare access and to the total racism of the medical establishment at the time. And so until TB became understood as an infectious disease. It was generally believed to be rare or impossible among people of color.

of color. So whereas before white supremacy had held that only white people could get this disease of civilization, now white supremacy held that disproportionately this disease would affect quote unquote less civilized people, and that had devastating consequences for the way that the medical establishment treated people with TV, for the way the medical establishment understood TV and people

of color. And even today there's still a huge disproportionate bias toward people of color when it comes to the burden of tuberculosis, even in rich countries, but all throughout the world.

And you can almost see it in the language, like before eighteen eighty two, consumption is almost always referred to as consumption, and after eighteen eighty two, it's almost always referred to as tuberculosis. So you see the medicalization of it even in the language that we use to describe the illness, almost as if they're two different illnesses. Because they're imagined so differently.

How might friends or family or the community broadly respond to someone's diagnosis with tuberculosis.

hugely stigmatized. It's very common for people who have TB to be dropped off at the hospital and completely abandoned by their families, in some cases to never see their families again. One of the most heartbreaking things I've heard from nurses working in TB hospitals is how they often have to be the only person at the funeral for someone who dies of TB, where that person is buried alone and the nurse or the nurses are the only people who are there. And you know that's because TB

is seen as a disease of poverty. It's sometimes seen as a disease of demon possession, even a disease that's associated with all kinds of wrongly I think it's safe to say associated with all kinds of moral failings, and so it's really a hugely stigmatizing experience Henry talks about in a memoir that he wrote. He talks about the experience of being abandoned by his cousins, being abandoned by his friends. He was very fortunate not to be abandoned

by his mother. So his mother I saw to stayed incredibly close to him, visited him almost every day for three years while he was hospitalized, and that made a huge difference in his life. But for many people that's not the norm, I think it's.

There were cities like Asheville, North Carolina, Pasadena, California, that were essentially founded as tuberculosis colonies, and all of a sudden, these places just emptied out. I mean, you read about these people who lived in sanatoria. I read one memoir by a woman who lived in a sanatorium from the age of three until she was seventeen and suddenly strepped to micin made it so that she could go home, and she didn't even remember what it was like to

be lovingly touched. She didn't remember what it was like to be with friends and family, be in that kind of like loud, boisterous environment of a home. But for many millions of people that was the case. I mean, the antibiotic era really dramatically reduced the burden of TV, but it also made it so that we imagined TV differently. Instead of being an incurable, chronic, terrifying condition, it became

something that we know how to cure. The problem is that in many communities it remained an incurable chronic condition.

disease that wealth never warded off anymore. What are these patterns that we see and how do they kind of reveal global priorities in public health?

where we allocate our resources. I have to tell you as we're recording this, I just received a message from my friend Attol Gawande, who was the head of Global health at USAID and saying that there are boxes of TV medication right now rotting in warehouses waiting to be distributed, and there's no way to distribute them. And that's the kind of thing that we have seen really for decades

on various levels. You know, we've seen sometimes there are systematic attempts to get tuberculosis treatment to lots of people. A lot of times those attempts are very haphazard and consistent. They are you know, funded by small nonprofits or by individuals, and you know, not in a way that's long term sustainable or can deal with the size of the crisis that we face. And tb anywhere is a threat to

people everywhere. I mean, I think it's really important to acknowledge that, Like, yes, we have dealt with TV in the United States, but we have had a TV outbreak in Kansas earlier this year. We have over ten thousand cases of active tuberculosis every year in the United States and probably over one hundred thousand cases of latent TV that we don't always identify, and so it's a truly

global problem. Now it's very rare to die of tuberculosis in the United States because people can generally access healthcare, but it does happen. And as if we continue to let this disease spread among millions of people every year and we're inconsistent with treatment regimens, we are allowing the disease to have millions and millions of opportunities to evolve further resistance to the tools that we have to fight it.

And because we haven't done a good job of inventing new tools over the last sixty years, that's a real issue.

there's funding inconsistency, there's an overall lack of access. Can you sort of help me connect to the dots for how all of these things lead to tuberculosis as the end result.

from Sierra Leone's economy, and so many other factors. But you know, Henry in the end got sick because TB has been allowed to thrive in Sierra Leone for the last several hundred years and has been allowed to thrive since we developed tools to fight it. Henry developed drug resistant tuberculosis, and so for someone like him, treatment is

very difficult. Not because it's impossible or because it's the treatment is made of gold, or we have to go to the moon to get it or something, but because the global health system thinks of tuberculosis as being very expensive to treat, and especially of drug resistant tuberculosis as being very expensive to treat. Now that's starting to change.

But when Henry got sick in twenty eighteen, when he first was really diagnosed with drug resistant tuberculosis and became very very ill, there were very few options available to people like him in a country like Sierra Leone. If I'd gotten the exact same strain of drug resistant tuberculosis at the exact same time, I would have received an immediate molecular test to identify not just whether I had TV, but which antibiotics my TV would respond to. I would

have been put on appropriate treatment immediately. I would have been isolated, and within a few months I would have been able to go home, and within a year I would have been healthy and cured. But that wasn't the case for Henry. Henry had to go to Leaca, to this tuberculosis hospital and he had to be put on

second line antibiotics, which it turned out didn't work. And we would have known that they wouldn't work if he could have afforded that molecular test, but they weren't available in sierily.

for non compliance. So can you sort of, you know, talk a little bit more about that and this nuance with non compliance sure.

to consider. But then also I remember once I was in Sierra Leone and I was making a home visit with a doctor and a community health worker, and the community health worker asked the young patient, have you been able to take your TV meds today? And she said, no, I don't have any food, and if I take them without food, I just throw up. I just throw them

up immediately. And so the doctor said, well, you know, sometimes if you pour a little bit of sugar into your water, it can settle your stomach a little and allow you to take the medication. And that was the only thing that he was able to say to her because there were no resources to buy her food in that moment. And so is that a non compliant patient? I mean, if you throw up immediately after taking your medication because you don't have access to food, are you

a non compliant patient? Are you a non compliant patient if you can't afford the transportation to get to the clinic every single day? Because still often patients have to be physically observed, it's called directly observed therapy. They have to be physically observed taking their medication every single day

to make sure that they're quote unquote compliant. But that the burden of having to get to a healthcare facility every day, affording transportation, affording childcare, whatever the complexities are in your particular life, that burden is often overwhelming for people. So there are a number of reasons why people might be deemed non compliant or deemed loss to follow up,

which is another phrase I find horrifying. And we have to make space for the healthcare system to meet the needs of patients rather than requiring patients to meet the needs of the healthcare system. We do a bad job of that everywhere. I mean, I don't think we do a particularly good job of it in the United States. I know that, like I struggle sometimes to get access to mental health care that I need, even though I

have lots of resources available to me. But I think we need to do a much better job of it, especially in impoverished communities.

And some of it has to do with this idea that somehow, like I'm less whole or self sufficient or complete or whatever. If I need medication in order to be myself or in order to be well, some of it has to do with the burden of getting the medication, you know, And my burden of getting the medication is just calling up the pharmacy and getting a refill. It couldn't be easier for me. And yet still like that

barrier sometimes feels overwhelming to me. And then you have to remember that a lot of people living with tuberculosis are also living with other health problems, including severe mental health problems. I remember meeting with a young man who'd been completely abandoned by his family, who struggled to take his medicaation, who'd been abandoned by his friends, who was utterly alone in the world, who felt absolutely hopeless, who

was you know, consumed by depression. And you know, we're asking this person to make his way to a clinic every day so that he can take his medication. Like that's that's asking a lot.

drugs for the disease. Yet, as you discuss, very few tuberculosis drugs have been developed in recent years, and these newer drugs even are prohibitively expensive despite mostly being funded with, you know, with public funds. So what are some of the ways that people are working on this problem.

motive wasn't there. Now, and some of this has become complicated of late, but now there are more mechanisms in place to try to incentivize the creation of anti TB drugs and drugs in general that I consider diseases of injustice, diseases that are caused not primarily by whatever the pathogen is, but really by human choice, by human built systems, like tuberculosis, like cholera I think is another great example. Typhoid's a good example. Malaria is one of the big examples. In

the twenty first century. All those diseases, I think they still don't receive nearly the amount of attention that they should, nearly the funding that they should, but they receive more funding. And so in the last ten or twelve years, we've developed some powerful new medications to treat TB, including bedaculin

and dilaminid, which are really good drugs. Now, as you point out, they have historically been too expensive, and so we're using a lot of times second line antibiotics that are from the sixties that we know aren't very good and that are highly toxic, that can cause total hearing loss and up to twenty percent of people who take them lots of other adverse effects. But we're starting to

see the better regimens roll out and more encouraging. Still, the amount of time that people need to be treated for tuberculosis is going down, so we're starting to see the NTB trials, which were funded by partners in health and doctors without borders. Those saw that we can cure TB in less time than we thought we could, and that's encouraging. So I think we have better tools than ever. We have better diagnostic tools than ever. We're on the cusp of maybe having a tongue swab test for TV

that would be game changing and very inexpensive. We have better drugs than ever, we have shorter regimens than ever, and on all those fronts we are starting to see real progress in the last ten years.

easy to get wrapped up in all of that. The challenge is ahead of us, but it is so important to remember that there are people who are doing really excellent work and really trying to change things when it comes to the way that we treat and deal with tuberculosis, and these sustained improvements that we would be able to make when it comes to tuberculosis, you know, requires investment in healthcare infrastructure, in treatment and early detection and active

case finding. And if we did a better job with tuberculosis, that would be money saving in the long run, like tremendously so, and I hate could always bring it to money. But that is such a crucial part of every single like public health decision. Why does that calculation not seem to matter.

without TV. If you think about how much we used to spend on tuberculosis in the United States, when we had seven hundred thousand hospital beds devoted to the disease, and how much we spend on it now, you see that impact right Like you can just see it intuitively that we used to spend a ton of money on TV in the US and now we have to spend much less. Although we're having to start to spend more

because we're seeing more TV in the US. I think the reason we don't make those investments is because we're quite shortsighted when it comes to public health, and so we think, I mean, Paul Farmer used to rail against this. He used to talk about the everybody talks about the cost of treating TB, and nobody talks about the cost of not treating TV, and the cost of not treating TV is so high, but we're accustomed to paying that cost. We've been paying that cost in an ongoing way for generations.

It's time to start paying the cost to treat TB and find out the benefits of not having to pay the cost of not treating TB.

tuberculosis more likely. It's it all is interconnected, and we are able to make large scale changes that would impact tuberculosis and many many other things.

we're also checking, you know, for other noncommunicable diseases. And that's a really important thing to understand that stronger healthcare systems overall, they get stronger healthcare systems overall, and investment in healthcare that really strengthens the system is not just good for tuberculosis. It's also good for malaria. It's also good for HIV. It's also good for diabetes and any other disease that people get.

immensely proud of him. We're very close and he's just doing awesome.

goes by an acronym. Like everything in the world of global health, like everything in the world of tuberculosis, the acronym is STP Search Treat Prevent So first, large scale active case finding like we did in the US in the nineteen forties and fifties, where we had mobile vans with chest X rays inside of them fan out across the country, offer people free chest X rays and then find cases that way, so you're not only finding cases when people are so sick that they come into the hospital.

You're identifying the disease earlier, when it's easier to treat and there's less risk of long term disability. And then there's the second letter T for treat. Treat every single person with tuberculosis, offer them the kind of care that they need in order to get well. And then the last letter P stands for prevent preventative therapy. So we have a way of making sure that somebody who's exposed to TB never gets sick. It's one month of preventative antibiotics.

And so if we offer preventative therapy to all the close contacts of the people we identify with TB, we can end that chain of transmission completely. This is a bold,

ambitious plan. You know. Some of the estimates say that it would cost twenty five billion dollars a year, but as you pointed out, each of those dollars would result in forty dollars of future benefit to our species, and more importantly, it would result in six point six by some estimates, million fewer deaths over the next seven years. And there is hardly a better bet in global health than that.

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