April 22, 2025 • 56 mins
Tuberculosis, or consumption as it was once known, might conjure up images of huge sanitoriums or writers and artists from the late 1800s (Moulin Rouge, anyone?). But this deadly disease is far from an illness of the past. In many parts of the world, tuberculosis remains an insidious killer, despite the fact that we’ve had effective drugs to treat the infection for decades. In this week’s TPWKY book club episode, we’re thrilled to be joined by the one-and-only John Green to chat about his latest book, Everything Is Tuberculosis. Tune in for a fascinating conversation that tours the past, present, and uncertain future of this devastating illness.
Support this podcast by shopping our latest sponsor deals and promotions at this link: https://bit.ly/3WwtIAu
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:44):
Hi, I'm Aaron Welsh and this is this Podcast Will
Kill You. Welcome to our very first tp w k
Y book Club episode of the season. In these episodes,
I get to chat with authors of popular science and
medicine books about their latest work, and I get it
behind the scenes look at what goes into putting these
(01:06):
books together. I am so excited to be bringing you
more of these episodes over this next year, and we
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
(01:28):
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
episode lineup, and so check in regularly. As always, we
love getting your feedback on the work that we do,
(01:49):
so please reach out via the contact us form on
our website to share your thoughts. I especially appreciate each
and every one of you who has written in about
these episodes or suggested books to cover. I've definitely followed
up on a few of these recommendations, so stay tuned.
Two final things to mention before moving on to the
book of the week. Number one, please rate, review and
(02:13):
subscribe really does help us out. And number two, we're
now on YouTube. You can find full video versions of
most of our newest episodes by going to the Exactly
Right Media YouTube channel. Make sure you subscribes you never
miss an episode. All right, let's get to the real
reason we're here. John Green's Everything Is Tuberculosis. I know
(02:35):
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,
(03:00):
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
(03:24):
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
(03:48):
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
(04:11):
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
(04:34):
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,
(05:14):
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.
Speaker 2 (05:19):
Oh well, thank you, Erin. It's great to be here.
I'm a fan of the pod.
Speaker 1 (05:22):
That is so thrilling. That absolutely made my day. So
usually I start off these book club episodes by asking
someone how did you get the idea for this book
or how did this book come to be? But today,
with you, I'd love to begin by asking about Henry.
Can you tell me how meeting Henry started you on
(05:43):
this journey that led to this book.
Speaker 2 (05:45):
Sure, in twenty nineteen, I had no idea that tuberculosis
is the world's deadliest infectious disease. I would have been
stunned to hear that. I was visiting Sierra Leone with
my wife, where we work with Partners in health on
maternal mortality infant mortality in the Cono region, and on
the last day of the trip, some of the doctors
(06:06):
we were traveling with asked if we could go to
a tuberculosis hospital, and I was like, tuberculosis hospital, that's
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
(06:26):
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
(06:48):
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
(07:10):
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
(07:30):
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.
Speaker 1 (07:39):
Yeah, it is. You know, there's this statistic that you
say early on in your book about one hundred and
fifty million people having died since we've had a cure
for tuberculosis, and that's just been like circulating and echoing
in my head over and over again, and I pull
people aside and I'm like, did you know this? And
I feel like it is so it's such a stark
(08:00):
statistic because it really cuts to this core question of
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?
Speaker 2 (08:19):
Yeah, I think the biggest driver is choice, human choice.
We have chosen to live in a world with tuberculosis.
We've chosen to live in a world where in countries
like Germany or the US or Australia, TB is very rare,
and in countries like sier Leone or even middle income
countries like India and the Philippines, TV is very common.
(08:41):
And some of that is because TV is difficult to cure.
You know, it takes four to six months of daily
antibiotics with the newest regimens it used to take even longer,
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
(09:02):
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.
(09:23):
And that's very much still the case with tuberculosis.
Speaker 1 (09:26):
Yeah, absolutely, And you know, I want to kind of
circle back to the current present and then the potential
future in a bit, but let's take a step back
and look at the deep history of tuberculosis. I mean,
this is a disease that has been with humans for millennia,
and yet, as with many other infectious diseases, it is
(09:47):
rarely acknowledged outside of you know, specific disease history books,
you know on influenza or on cholera, as like this
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?
Speaker 2 (10:07):
Well, I think it's a great mystery. But in the book,
I argue that one of the reasons we do is
that we're so biased toward human agency. We love a
story where humans are in control, and we love a
story where humans make choices rather than have those choices
made for them by micro organisms or viruses. Like that's
an uncomfortable thing to live with. So I speculate in
(10:28):
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.
Speaker 1 (10:45):
Let's take a quick break, and when we get back,
there's still so much to discuss. Welcome back everyone. I've
(11:08):
been chatting with John Green about his latest book, Everything
Is Tuberculosis. Let's get back into things. I mean, especially
when you're when examining wars and the history of wars,
like generals aren't acting in isolation, and neither are the
diseases that are spreading throughout the entire military or through
war torn regions. You can't look at these diseases or
(11:31):
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.
Speaker 2 (11:53):
Sure, I mean it's very unlikely New Mexico would have
become a state, or at least become a state when
it did, without tuberculos, because New Mexico had all the
institutions needed for statehood, and it wanted statehood, but Congress
repeatedly rejected it because it had such a large Spanish
speaking population, for just reasons of outright racism, and also
(12:17):
because it had a large population of indigenous people. And
so New Mexico realized that in order to become a state,
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
(12:40):
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
(13:01):
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,
(13:22):
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.
(13:44):
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
(14:06):
three of them were nineteen died within a couple of
years of tuberculosis after assassinating the Archduke.
Speaker 1 (14:13):
That is wild to think about that this disease could
have such far reaching consequences, and I'd love to hear
more about one of these consequences slightly less extreme than
a World war maybe, And that is why we may
have tuberculosis to think or blame, depending on who you
ask for the cowboy hat.
Speaker 2 (14:34):
Oh yeah, no, that's an interesting one. So this young
hat maker was living in New Jersey, his name was John,
and he got TB and was told that his only
chance of survival was to head west, which young people
were often told, especially young men who got consumption, and
so he headed west. He only made it as far
(14:54):
as Saint Joseph's, Missouri, which might be the most humid,
least dry airplace I've ever been and personally, but nonetheless
that's where he ended up. And while he was there
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
(15:15):
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
(15:38):
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.
Speaker 1 (15:50):
It's amazing that that final reveal of like and then
Stetson was his last name. Yeah, it's really good. Also,
it's just it's so funny that like, it was just
all of these different factors combining. I mean, it's what
I love about history and how we can make these
different connections. But yeah, so humans have long given different
meanings to disease in part to you know, make sense
(16:12):
of the world, to answer why me or why them?
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
(16:34):
was such a devastating disease seen this way?
Speaker 2 (16:37):
Well, I think you make a really good point that
part of it is the outward appearance of the disease,
right like Mycobacterium, tuberculosis is very closely related to the
bacteria that causes leprosy, and leprosy, of course, is perceived
very differently because it's seen as a disfiguring disease rather
than as an ennobling one, although at times leprosy has
also been seen as ennobling because of its connection to Jesus,
(16:59):
at least in the Christian world. But with TV, everybody
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.
Speaker 1 (17:19):
It's a staggering statistic.
Speaker 2 (17:21):
Staggering, I mean, it was completely overwhelming. One writer referred
to it as the frightful tuberculization of humanity and it
was terrifying. Yeah, And so how do you make sense
of a disease that, as Charles Dickens put it, wealth
never warded off. A disease that you can't easily stigmatize,
a disease that doesn't just affect poor people or marginalized people.
(17:42):
I mean, the richest guy of the nineteenth century died
of tuberculosis. How do you make sense of that disease?
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.
(18:03):
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
(18:25):
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,
(18:48):
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,
(19:14):
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.
Speaker 1 (19:36):
The words like tubercular and tuberculized, tubercular, what is it tuberculization.
It's what other infectious diseases have so many derivative words
developed from them. It's remarkable. And you know, I think
this again, these statistics that you bring up one third
of everyone you know dying of tuberculos or who died
(19:58):
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
(20:20):
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.
Speaker 2 (20:35):
Yeah, and this is a really I think that's a
really important point. Tuberculosis was almost universally in Northern Europe
believed to be inherited, and so it was seen as
a hereditary disease that ran in families, and that as
such also came with certain other personality traits the way
that those are also passed down in families, and one
of those personality traits, this was called spez tysika, I
(20:58):
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
(21:20):
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
(21:43):
in fact caused by a bacteria like cholera, like anthrax,
like the other diseases that were coming to be understood
as infectious.
Speaker 1 (21:51):
I want to kind of get into that switch of
what that medicalization of tuberculosis meant. But before I want
to ask how we can see the effects of tuberculosis
in the art and literature of the day. I know
we've mentioned Dickens a couple of times, but it's everywhere
else and Shelley and yeah.
Speaker 2 (22:08):
It's everywherewhere. It's everywhere, and not just in Western art.
It's also I write a lot about the Japanese and
Indian artists and poets who lived with tuberculosis. But in
Northern Europe in the nineteenth century, because there was this
romanticization of tuberculosis, there was also a romanticization that affected
(22:28):
art and poetry. You see paintings by Toulouse Latrek, for instance,
of a woman applying rice powder to her face and
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
(22:49):
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
(23:13):
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
(23:36):
was believed that this disease made you a great artist.
Speaker 1 (23:40):
The name consumption comes from the fact that, like it
is a consuming disease, so how it's just it's fascinating
to think about how that connection was made. How can
you produce novels or plays or pieces of art while
you are being consumed from the inside.
Speaker 2 (23:56):
I think that's exactly right. I mean, look, this romanticization
of consumption, like the romanticization of mental illness today, or
the romanticization of whatever diseases we romanticize or stigmatize, like
it's all hooey. That's really important to note that, like
dying of tuberculosis is horrible and really painful, and it's
(24:16):
not nearly as romantic as it was made out to be.
Speaker 1 (24:19):
Yeah, this ever present threat of death from tuberculosis and
everything else that was happening during in many industrialized regions
of the world during the seventeen hundreds eighteen hundreds. I
was thinking about this in the context of how people
related to their own mortality at any stage, or the
mortality of their friends and family. What did that And
(24:42):
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.
Speaker 2 (24:55):
Yeah, I think tb was and remains really hard because
it it was called the robber of youth. It killed
people in the one time of life when you were
supposed to be relatively insulated from death and dying. Right
like half of all people at the time were dying
before the age of five, and then of course lots
of people were dying over the age of fifty five.
But between the ages of say ten and forty five,
(25:18):
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
(25:40):
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
(26:01):
find an explanation for the unexplainable. And I think that
happened a lot with consumption in the eighteenth and nineteenth century.
Speaker 1 (26:08):
Let's take a quick break here. We'll be back before
you know it. Welcome back, everyone. I'm here chatting with
the incredible John Green about his book Everything Is Tuberculosis.
(26:31):
Let's get into some more questions. People have never dealt
with uncertainty or been able to sit with uncertainty. Even
if we know the mechanism of disease and how the
path of physiology, it's still there's still plenty of room
for blame and stigma and shame. And so you touched
on this a bit with a conflation of tuberculosis and whiteness.
(26:52):
How was the prevailing assumption of tuberculosis as like a
white man's disease shaped by colonialism and white supremacy.
Speaker 2 (27:00):
Profoundly, profoundly, it was really believed by white doctors that
consumption was impossible among people of color. And this was
partly because consumption was so romanticized that it was believed
to be a disease of the great intellects, and a
disease of the very beautiful, and a disease of paleness,
(27:20):
and all of this stuff, and all these ideas that
we had in Europe and the United States around whiteness
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,
(27:42):
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.
Speaker 1 (28:06):
And then how did the discovery of microbacteria tuberculosis sort
of changed that both that aspect but also overall what
tuberculos is, you know, the romanticization and sort of now
this new othering of this disease.
Speaker 2 (28:21):
Yeah, it changed everything. Once we understood that TV was infectious,
Suddenly it became a disease that was no longer romanticized
and was heavily stigmatized, associated with poverty, associated with poor
working conditions, crowded living conditions, and especially associated with people
of color. So whereas before white supremacy had held that
(28:42):
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
(29:04):
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.
Speaker 1 (29:18):
Yeah, I was thinking about this transitional period and tuberculosis
had such an impact, as we've talked about on art
and literature and all these different aspects of life. When
that medicalization happened, how did that, like, how quickly did
that disappear from that culture of tuberculosis.
Speaker 2 (29:38):
It disappeared pretty quickly, But it disappeared as quickly as
people started to really agree that the disease was infectious,
that it wasn't hereditary. So it took a couple decades.
A number of people kind of held onto the idea
that the disease was hereditary and therefore that this idea
of the tubercular personality still should hold sway. But as
(30:01):
it became clearer and clearer and the evidence mounted that
this is actually an infectious disease, that started to melt away.
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
(30:22):
the illness, almost as if they're two different illnesses. Because
they're imagined so differently.
Speaker 1 (30:27):
Yeah, it is. It is sort of like, yeah, this
romantic disease to this horror that is tuberculosis.
Speaker 2 (30:33):
And there is something inherently horrific about infectious disease, right, Like,
there's something terrifying about the idea that we can survive
lions and bears and tigers and make all of them
irrelevant to our safety, but we can't survive these tiny
micro organisms that spread through the air. I mean that
is the stuff of a literal horror movie.
Speaker 1 (30:55):
Yep, yeah, absolutely no, it's that period of seeing finally
these things and making a connection is fascinating to think
about how we perceived a cause of disease. But so
this medicalization, this discovery of the fact that tuberculosis was
caused by bacterium, this led to a lot of stigma,
(31:15):
and that stigma is in large part still present today
very much. And so can you talk a little bit
about that. You know, what happens when someone is diagnosed.
How might friends or family or the community broadly respond
to someone's diagnosis with tuberculosis.
Speaker 2 (31:31):
Yeah, so in a different age, in a different time,
someone like Henry would have been really lifted up for
having TB right, I mean, he writes poetry. He's a
very engaged, sensitive kid, and he embodied that idea of
the tubercular personality. And if we'd had an inherited genetic
(31:52):
model for TB, he would have very much fit into
that romanticization of the disease. But because he got to
be in a different time in place, he was instead
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
(32:12):
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
(32:36):
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
(32:56):
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
(33:21):
not the norm, I think it's.
Speaker 1 (33:22):
Safe to say, which is just utterly heartbreaking. I mean,
especially given that the stigmatizing, isolating disease is one that
we've had effective treatments for since the nineteen fifties. How
did the development of those treatments change the perception of tuberculosis.
Speaker 2 (33:40):
Yeah, so it went from being a death sentence to
suddenly being a curable disease. I read a number of
memoirs from people who lived in sanatoria. At the height
of the TB crisis in the United States in the
early nineteen hundreds, there were almost as many hospital beds
for TV patients as there were for all other causes combined,
and there were hundreds of these sanatoria around the country.
(34:04):
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
(34:26):
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,
(34:51):
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.
Speaker 1 (35:07):
And simply due to lack of access. And I think
that we have a tendency, or at least here in
the US, we have a tendency to think of like, oh,
we solved that, we figured that out. Going back to
that Charles Dickens quote of tuberculosis as the great leveler.
But we see these patterns of disease and tuberculosis on
a global scale that really show that it's not the
(35:27):
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?
Speaker 2 (35:37):
I mean, the pattern that we see is the pattern
that you identified at the beginning of this conversation, which
is that since TB became curable, we let one hundred
and fifty million people die of it. Yeah, I mean
probably more than that. That's a conservative estimate, and we
have done that because of systems of resource distribution and
(35:58):
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,
(36:19):
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.
(36:41):
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
(37:02):
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,
(37:25):
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.
(37:46):
And because we haven't done a good job of inventing
new tools over the last sixty years, that's a real issue.
Speaker 1 (37:52):
Yeah, I mean truly, and I appreciate that the global
perspective of sort of how all of these things are
playing together, and I want to kind of narrow in
on Sierra Leone specifically to connect the dots between all
of these different factors that contribute to people, you know,
developing tuberculosis and then not receiving the care that they
(38:13):
should be receiving. And there's you know, there's healthcare infrastructure,
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.
Speaker 2 (38:25):
Yeah, I think that's exactly right. You have to understand
this in historical context. We have to understand that tuberculosis
did not just arrive in Sierra Leone. It did not
just like show up in Henry one day. This happened
because of a series of historical events and historical forces
that go back for centuries. That go back to the
Transatlantic slave trade, in colonialism and the extraction of resources
(38:49):
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
(39:12):
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
(39:33):
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
(39:55):
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
(40:16):
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.
Speaker 1 (40:29):
On at the time. Yeah. And so you mentioned that
Henry had a drug resistant form of tuberculosis, and one
of the primary reasons cited for the rise and spread
of drug resistant tuberculosis is patient on compliance. But there
is so much more nuance to that term patient non
compliance that I really appreciate that you went into in
(40:50):
your book and this how this term unfairly places blame
and burden entirely on the patient without examining the reasons
for non compliance. So can you sort of, you know,
talk a little bit more about that and this nuance
with non compliance sure.
Speaker 2 (41:07):
Well, first off, if you receive a seven day treatment
of antibiotics to cure strep throat and you take it
for six days, you're technically a non compliant patient. So
just bare that in mind. I mean, how many of
us have you know, not taken that last day of
antibiotics because we felt better. Well, imagine having to take
dozens of pills every day for four months, or six
(41:30):
months or a year that make you very sick, that
have side effects that you don't like. That's one thing
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,
(41:51):
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
(42:12):
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
(42:33):
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.
(42:56):
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
(43:16):
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.
Speaker 1 (43:33):
The way that so many people with tuberculosis are treated
just shows this lack of trust in them as individuals
who also want to they don't want to be sick
with this, Like it just sort of is that non
compliance term really kind of has these connotations of like, well,
they just don't care enough. It's like, of course they do.
How could that be the conclusion, yeah right, yeah.
Speaker 2 (43:55):
Right, Or that they're somehow like not dedicated, they're not
adequately you know, they're not out of quickly hard working
or committed to their own health or whatever. But like,
you know, first off, lots of people struggled to take
their medication. I struggled to take my medication. I don't
know exactly why. I think some of it has to
do with stigma, with this idea that you know, somehow
I'm less I take medication to treat OCD in major depression.
(44:18):
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
(44:39):
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
(44:59):
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.
Speaker 1 (45:18):
Yeah, I think these are these are aspects that aren't
don't always come out in medical literature unless it's about
this specific you know, the context of non compliance and
what that what that actually reveals, given that some of
this awful side effects of these tuberculosis medications. Seems like
one way to overcome this would be to develop new
(45:40):
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.
Speaker 2 (46:00):
Yeah, So this is a place of encouragement for me,
And I'm sorry if this has been a largely discouraging conversation,
but this really is a place of encouragement for me.
Between nineteen forty four and nineteen sixty five, we developed
something like eight classes of drugs to treat tuberculosis, and
then between nineteen sixty six and twenty twelve we developed none.
And all those years we could have been developing great
(46:22):
tools to treat TB, but we didn't because the profit
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,
(46:47):
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,
(47:08):
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
(47:29):
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
(47:50):
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
(48:13):
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.
Speaker 1 (48:21):
Yeah, that is really encouraging, and I think that it's
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
(48:43):
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
(49:07):
to matter.
Speaker 2 (49:09):
Every dollar we invest in TV brings forty dollars in
future health benefits, And every time we end a chain
of transmission of TV, it means less TB in the world.
You know, TB is a curable disease, which means that
we could eliminate it. We could live in a world
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,
(49:31):
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
(49:53):
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
(50:15):
and find out the benefits of not having to pay
the cost of not treating TB.
Speaker 1 (50:19):
Not to mention that so many of the structural improvements
that would help to reduce the burden of tuberculosis would
make a major impact in so many other aspects of
infectious disease. It's that totally, especially when there's interactions between
tuberculosis and your immune system, and if you're infected with
this disease and tuberculosis, then that maybe that makes active
(50:42):
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.
Speaker 2 (50:53):
Yeah, and I think you're right that when we invest
in a disease like tuberculosis, we also invest in a
stronger healthcare system. When we're doing active case finding for TB,
we're also checking people's blood pressure. We're also checking for diabetes,
we're also checking, you know, for other noncommunicable diseases. And
that's a really important thing to understand that stronger healthcare
(51:14):
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.
Speaker 1 (51:29):
Yeah, it's it's all, it's all. It's like they're all connected.
Speaker 2 (51:33):
You know, it's almost like they're all connected.
Speaker 1 (51:35):
How about that. Yeah, So I want to wrap up
on a hopeful note and with two with two final
questions for you. The first is Henry. What is what
is Henry up to these days?
Speaker 2 (51:50):
So? Henry was sick for a really long time and
it took a long time to cure Henry. But thanks
to the Sierra Leonian Ministry of Health and the organization
Partners in Health, the medicine that Henry needed was finally
made available to him and he survived TB. He was cured.
He is a healthy, happy young man now. He's twenty
(52:10):
four years old and he's a student at the University
of Sierra Leone. He's studying business and human resources. I'm
immensely proud of him. We're very close and he's just
doing awesome.
Speaker 1 (52:22):
It's amazing. And he has a TikTok channel. Is that right? Oh?
Speaker 2 (52:26):
Yeah, he definitely has a TikTok And he also has
a YouTube channel and he wants you to subscribe, So
google Henry Writer YouTube.
Speaker 1 (52:34):
Good.
Speaker 2 (52:34):
Good.
Speaker 1 (52:36):
So we have this roadmap for how to make things
better with tuberculosis. We know what we can do, we
have people working on it. What are you most hopeful
for in the next in the near future, in the
maybe distant future, what do you most hope to see happen.
Speaker 2 (52:55):
Well, we have a really good roadmap for how to
eliminate TB globally as a public health threat. And it
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
(53:15):
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
(53:36):
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
(53:56):
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
(54:17):
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.
Speaker 1 (54:34):
Yeah, I completely agree, John. It has been so fantastic
to chat with you and an honor to meet you,
truly thrilling. Thank you so much for a great conversation.
Speaker 2 (54:45):
Thank you so much. Erin. It's so cool to be
able to meet you and to be on the pod.
I really appreciate it.
Speaker 1 (55:09):
A huge thanks again to John Green for taking the
time to chat with me. That was such a great conversation.
For more tuberculosis talk, check out our website this podcast
will kill You dot com. We're all post a link
to where you can find Everything is Tuberculosis, as well
as a link to John's site, and don't forget you
can check out our website for all sorts of other
(55:31):
cool things, including but not limited to, transcripts, quarantine and placy,
berita recipes, show notes and references for all of our episodes,
links to merch our bookshop, dot Org, affiliate account, our
Goodreads list, a first hand account, form, and music by Bloodmobile.
Speaking of which, thank you to Bloodmobile for preventing the
music for this episode and all of our episodes. Thank
(55:53):
you to Leana Squilacci and Tom Bryfogel for our excellent
audio mixing. And thank you to you listeners. Listen, I
hope you liked this episode and our loving being part
of the TPWKY book Club. A special thank you, as
always to our fantastic patrons. We appreciate your support so
(56:13):
very much. Well, until next time, keep washing those hands.
Hi, I'm Aaron Welsh and this is this Podcast Will
Kill You. Welcome to our very first tp w k
Y book Club episode of the season. In these episodes,
I get to chat with authors of popular science and
medicine books about their latest work, and I get it
behind the scenes look at what goes into putting these
(01:06):
books together. I am so excited to be bringing you
more of these episodes over this next year, and we
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
(01:28):
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
episode lineup, and so check in regularly. As always, we
love getting your feedback on the work that we do,
(01:49):
so please reach out via the contact us form on
our website to share your thoughts. I especially appreciate each
and every one of you who has written in about
these episodes or suggested books to cover. I've definitely followed
up on a few of these recommendations, so stay tuned.
Two final things to mention before moving on to the
book of the week. Number one, please rate, review and
(02:13):
subscribe really does help us out. And number two, we're
now on YouTube. You can find full video versions of
most of our newest episodes by going to the Exactly
Right Media YouTube channel. Make sure you subscribes you never
miss an episode. All right, let's get to the real
reason we're here. John Green's Everything Is Tuberculosis. I know
(02:35):
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,
(03:00):
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
(03:24):
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
(03:48):
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
(04:11):
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
(04:34):
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,
(05:14):
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.
Speaker 2 (05:19):
Oh well, thank you, Erin. It's great to be here.
I'm a fan of the pod.
Speaker 1 (05:22):
That is so thrilling. That absolutely made my day. So
usually I start off these book club episodes by asking
someone how did you get the idea for this book
or how did this book come to be? But today,
with you, I'd love to begin by asking about Henry.
Can you tell me how meeting Henry started you on
(05:43):
this journey that led to this book.
Speaker 2 (05:45):
Sure, in twenty nineteen, I had no idea that tuberculosis
is the world's deadliest infectious disease. I would have been
stunned to hear that. I was visiting Sierra Leone with
my wife, where we work with Partners in health on
maternal mortality infant mortality in the Cono region, and on
the last day of the trip, some of the doctors
(06:06):
we were traveling with asked if we could go to
a tuberculosis hospital, and I was like, tuberculosis hospital, that's
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
(06:26):
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
(06:48):
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
(07:10):
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
(07:30):
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.
Speaker 1 (07:39):
Yeah, it is. You know, there's this statistic that you
say early on in your book about one hundred and
fifty million people having died since we've had a cure
for tuberculosis, and that's just been like circulating and echoing
in my head over and over again, and I pull
people aside and I'm like, did you know this? And
I feel like it is so it's such a stark
(08:00):
statistic because it really cuts to this core question of
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?
Speaker 2 (08:19):
Yeah, I think the biggest driver is choice, human choice.
We have chosen to live in a world with tuberculosis.
We've chosen to live in a world where in countries
like Germany or the US or Australia, TB is very rare,
and in countries like sier Leone or even middle income
countries like India and the Philippines, TV is very common.
(08:41):
And some of that is because TV is difficult to cure.
You know, it takes four to six months of daily
antibiotics with the newest regimens it used to take even longer,
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
(09:02):
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.
(09:23):
And that's very much still the case with tuberculosis.
Speaker 1 (09:26):
Yeah, absolutely, And you know, I want to kind of
circle back to the current present and then the potential
future in a bit, but let's take a step back
and look at the deep history of tuberculosis. I mean,
this is a disease that has been with humans for millennia,
and yet, as with many other infectious diseases, it is
(09:47):
rarely acknowledged outside of you know, specific disease history books,
you know on influenza or on cholera, as like this
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?
Speaker 2 (10:07):
Well, I think it's a great mystery. But in the book,
I argue that one of the reasons we do is
that we're so biased toward human agency. We love a
story where humans are in control, and we love a
story where humans make choices rather than have those choices
made for them by micro organisms or viruses. Like that's
an uncomfortable thing to live with. So I speculate in
(10:28):
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.
Speaker 1 (10:45):
Let's take a quick break, and when we get back,
there's still so much to discuss. Welcome back everyone. I've
(11:08):
been chatting with John Green about his latest book, Everything
Is Tuberculosis. Let's get back into things. I mean, especially
when you're when examining wars and the history of wars,
like generals aren't acting in isolation, and neither are the
diseases that are spreading throughout the entire military or through
war torn regions. You can't look at these diseases or
(11:31):
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.
Speaker 2 (11:53):
Sure, I mean it's very unlikely New Mexico would have
become a state, or at least become a state when
it did, without tuberculos, because New Mexico had all the
institutions needed for statehood, and it wanted statehood, but Congress
repeatedly rejected it because it had such a large Spanish
speaking population, for just reasons of outright racism, and also
(12:17):
because it had a large population of indigenous people. And
so New Mexico realized that in order to become a state,
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
(12:40):
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
(13:01):
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,
(13:22):
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.
(13:44):
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
(14:06):
three of them were nineteen died within a couple of
years of tuberculosis after assassinating the Archduke.
Speaker 1 (14:13):
That is wild to think about that this disease could
have such far reaching consequences, and I'd love to hear
more about one of these consequences slightly less extreme than
a World war maybe, And that is why we may
have tuberculosis to think or blame, depending on who you
ask for the cowboy hat.
Speaker 2 (14:34):
Oh yeah, no, that's an interesting one. So this young
hat maker was living in New Jersey, his name was John,
and he got TB and was told that his only
chance of survival was to head west, which young people
were often told, especially young men who got consumption, and
so he headed west. He only made it as far
(14:54):
as Saint Joseph's, Missouri, which might be the most humid,
least dry airplace I've ever been and personally, but nonetheless
that's where he ended up. And while he was there
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
(15:15):
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
(15:38):
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.
Speaker 1 (15:50):
It's amazing that that final reveal of like and then
Stetson was his last name. Yeah, it's really good. Also,
it's just it's so funny that like, it was just
all of these different factors combining. I mean, it's what
I love about history and how we can make these
different connections. But yeah, so humans have long given different
meanings to disease in part to you know, make sense
(16:12):
of the world, to answer why me or why them?
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
(16:34):
was such a devastating disease seen this way?
Speaker 2 (16:37):
Well, I think you make a really good point that
part of it is the outward appearance of the disease,
right like Mycobacterium, tuberculosis is very closely related to the
bacteria that causes leprosy, and leprosy, of course, is perceived
very differently because it's seen as a disfiguring disease rather
than as an ennobling one, although at times leprosy has
also been seen as ennobling because of its connection to Jesus,
(16:59):
at least in the Christian world. But with TV, everybody
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.
Speaker 1 (17:19):
It's a staggering statistic.
Speaker 2 (17:21):
Staggering, I mean, it was completely overwhelming. One writer referred
to it as the frightful tuberculization of humanity and it
was terrifying. Yeah, And so how do you make sense
of a disease that, as Charles Dickens put it, wealth
never warded off. A disease that you can't easily stigmatize,
a disease that doesn't just affect poor people or marginalized people.
(17:42):
I mean, the richest guy of the nineteenth century died
of tuberculosis. How do you make sense of that disease?
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.
(18:03):
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
(18:25):
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,
(18:48):
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,
(19:14):
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.
Speaker 1 (19:36):
The words like tubercular and tuberculized, tubercular, what is it tuberculization.
It's what other infectious diseases have so many derivative words
developed from them. It's remarkable. And you know, I think
this again, these statistics that you bring up one third
of everyone you know dying of tuberculos or who died
(19:58):
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
(20:20):
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.
Speaker 2 (20:35):
Yeah, and this is a really I think that's a
really important point. Tuberculosis was almost universally in Northern Europe
believed to be inherited, and so it was seen as
a hereditary disease that ran in families, and that as
such also came with certain other personality traits the way
that those are also passed down in families, and one
of those personality traits, this was called spez tysika, I
(20:58):
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
(21:20):
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
(21:43):
in fact caused by a bacteria like cholera, like anthrax,
like the other diseases that were coming to be understood
as infectious.
Speaker 1 (21:51):
I want to kind of get into that switch of
what that medicalization of tuberculosis meant. But before I want
to ask how we can see the effects of tuberculosis
in the art and literature of the day. I know
we've mentioned Dickens a couple of times, but it's everywhere
else and Shelley and yeah.
Speaker 2 (22:08):
It's everywherewhere. It's everywhere, and not just in Western art.
It's also I write a lot about the Japanese and
Indian artists and poets who lived with tuberculosis. But in
Northern Europe in the nineteenth century, because there was this
romanticization of tuberculosis, there was also a romanticization that affected
(22:28):
art and poetry. You see paintings by Toulouse Latrek, for instance,
of a woman applying rice powder to her face and
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
(22:49):
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
(23:13):
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
(23:36):
was believed that this disease made you a great artist.
Speaker 1 (23:40):
The name consumption comes from the fact that, like it
is a consuming disease, so how it's just it's fascinating
to think about how that connection was made. How can
you produce novels or plays or pieces of art while
you are being consumed from the inside.
Speaker 2 (23:56):
I think that's exactly right. I mean, look, this romanticization
of consumption, like the romanticization of mental illness today, or
the romanticization of whatever diseases we romanticize or stigmatize, like
it's all hooey. That's really important to note that, like
dying of tuberculosis is horrible and really painful, and it's
(24:16):
not nearly as romantic as it was made out to be.
Speaker 1 (24:19):
Yeah, this ever present threat of death from tuberculosis and
everything else that was happening during in many industrialized regions
of the world during the seventeen hundreds eighteen hundreds. I
was thinking about this in the context of how people
related to their own mortality at any stage, or the
mortality of their friends and family. What did that And
(24:42):
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.
Speaker 2 (24:55):
Yeah, I think tb was and remains really hard because
it it was called the robber of youth. It killed
people in the one time of life when you were
supposed to be relatively insulated from death and dying. Right
like half of all people at the time were dying
before the age of five, and then of course lots
of people were dying over the age of fifty five.
But between the ages of say ten and forty five,
(25:18):
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
(25:40):
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
(26:01):
find an explanation for the unexplainable. And I think that
happened a lot with consumption in the eighteenth and nineteenth century.
Speaker 1 (26:08):
Let's take a quick break here. We'll be back before
you know it. Welcome back, everyone. I'm here chatting with
the incredible John Green about his book Everything Is Tuberculosis.
(26:31):
Let's get into some more questions. People have never dealt
with uncertainty or been able to sit with uncertainty. Even
if we know the mechanism of disease and how the
path of physiology, it's still there's still plenty of room
for blame and stigma and shame. And so you touched
on this a bit with a conflation of tuberculosis and whiteness.
(26:52):
How was the prevailing assumption of tuberculosis as like a
white man's disease shaped by colonialism and white supremacy.
Speaker 2 (27:00):
Profoundly, profoundly, it was really believed by white doctors that
consumption was impossible among people of color. And this was
partly because consumption was so romanticized that it was believed
to be a disease of the great intellects, and a
disease of the very beautiful, and a disease of paleness,
(27:20):
and all of this stuff, and all these ideas that
we had in Europe and the United States around whiteness
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,
(27:42):
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.
Speaker 1 (28:06):
And then how did the discovery of microbacteria tuberculosis sort
of changed that both that aspect but also overall what
tuberculos is, you know, the romanticization and sort of now
this new othering of this disease.
Speaker 2 (28:21):
Yeah, it changed everything. Once we understood that TV was infectious,
Suddenly it became a disease that was no longer romanticized
and was heavily stigmatized, associated with poverty, associated with poor
working conditions, crowded living conditions, and especially associated with people
of color. So whereas before white supremacy had held that
(28:42):
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
(29:04):
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.
Speaker 1 (29:18):
Yeah, I was thinking about this transitional period and tuberculosis
had such an impact, as we've talked about on art
and literature and all these different aspects of life. When
that medicalization happened, how did that, like, how quickly did
that disappear from that culture of tuberculosis.
Speaker 2 (29:38):
It disappeared pretty quickly, But it disappeared as quickly as
people started to really agree that the disease was infectious,
that it wasn't hereditary. So it took a couple decades.
A number of people kind of held onto the idea
that the disease was hereditary and therefore that this idea
of the tubercular personality still should hold sway. But as
(30:01):
it became clearer and clearer and the evidence mounted that
this is actually an infectious disease, that started to melt away.
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
(30:22):
the illness, almost as if they're two different illnesses. Because
they're imagined so differently.
Speaker 1 (30:27):
Yeah, it is. It is sort of like, yeah, this
romantic disease to this horror that is tuberculosis.
Speaker 2 (30:33):
And there is something inherently horrific about infectious disease, right, Like,
there's something terrifying about the idea that we can survive
lions and bears and tigers and make all of them
irrelevant to our safety, but we can't survive these tiny
micro organisms that spread through the air. I mean that
is the stuff of a literal horror movie.
Speaker 1 (30:55):
Yep, yeah, absolutely no, it's that period of seeing finally
these things and making a connection is fascinating to think
about how we perceived a cause of disease. But so
this medicalization, this discovery of the fact that tuberculosis was
caused by bacterium, this led to a lot of stigma,
(31:15):
and that stigma is in large part still present today
very much. And so can you talk a little bit
about that. You know, what happens when someone is diagnosed.
How might friends or family or the community broadly respond
to someone's diagnosis with tuberculosis.
Speaker 2 (31:31):
Yeah, so in a different age, in a different time,
someone like Henry would have been really lifted up for
having TB right, I mean, he writes poetry. He's a
very engaged, sensitive kid, and he embodied that idea of
the tubercular personality. And if we'd had an inherited genetic
(31:52):
model for TB, he would have very much fit into
that romanticization of the disease. But because he got to
be in a different time in place, he was instead
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
(32:12):
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
(32:36):
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
(32:56):
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
(33:21):
not the norm, I think it's.
Speaker 1 (33:22):
Safe to say, which is just utterly heartbreaking. I mean,
especially given that the stigmatizing, isolating disease is one that
we've had effective treatments for since the nineteen fifties. How
did the development of those treatments change the perception of tuberculosis.
Speaker 2 (33:40):
Yeah, so it went from being a death sentence to
suddenly being a curable disease. I read a number of
memoirs from people who lived in sanatoria. At the height
of the TB crisis in the United States in the
early nineteen hundreds, there were almost as many hospital beds
for TV patients as there were for all other causes combined,
and there were hundreds of these sanatoria around the country.
(34:04):
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
(34:26):
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,
(34:51):
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.
Speaker 1 (35:07):
And simply due to lack of access. And I think
that we have a tendency, or at least here in
the US, we have a tendency to think of like, oh,
we solved that, we figured that out. Going back to
that Charles Dickens quote of tuberculosis as the great leveler.
But we see these patterns of disease and tuberculosis on
a global scale that really show that it's not the
(35:27):
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?
Speaker 2 (35:37):
I mean, the pattern that we see is the pattern
that you identified at the beginning of this conversation, which
is that since TB became curable, we let one hundred
and fifty million people die of it. Yeah, I mean
probably more than that. That's a conservative estimate, and we
have done that because of systems of resource distribution and
(35:58):
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,
(36:19):
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.
(36:41):
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
(37:02):
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,
(37:25):
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.
(37:46):
And because we haven't done a good job of inventing
new tools over the last sixty years, that's a real issue.
Speaker 1 (37:52):
Yeah, I mean truly, and I appreciate that the global
perspective of sort of how all of these things are
playing together, and I want to kind of narrow in
on Sierra Leone specifically to connect the dots between all
of these different factors that contribute to people, you know,
developing tuberculosis and then not receiving the care that they
(38:13):
should be receiving. And there's you know, there's healthcare infrastructure,
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.
Speaker 2 (38:25):
Yeah, I think that's exactly right. You have to understand
this in historical context. We have to understand that tuberculosis
did not just arrive in Sierra Leone. It did not
just like show up in Henry one day. This happened
because of a series of historical events and historical forces
that go back for centuries. That go back to the
Transatlantic slave trade, in colonialism and the extraction of resources
(38:49):
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
(39:12):
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
(39:33):
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
(39:55):
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
(40:16):
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.
Speaker 1 (40:29):
On at the time. Yeah. And so you mentioned that
Henry had a drug resistant form of tuberculosis, and one
of the primary reasons cited for the rise and spread
of drug resistant tuberculosis is patient on compliance. But there
is so much more nuance to that term patient non
compliance that I really appreciate that you went into in
(40:50):
your book and this how this term unfairly places blame
and burden entirely on the patient without examining the reasons
for non compliance. So can you sort of, you know,
talk a little bit more about that and this nuance
with non compliance sure.
Speaker 2 (41:07):
Well, first off, if you receive a seven day treatment
of antibiotics to cure strep throat and you take it
for six days, you're technically a non compliant patient. So
just bare that in mind. I mean, how many of
us have you know, not taken that last day of
antibiotics because we felt better. Well, imagine having to take
dozens of pills every day for four months, or six
(41:30):
months or a year that make you very sick, that
have side effects that you don't like. That's one thing
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,
(41:51):
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
(42:12):
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
(42:33):
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.
(42:56):
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
(43:16):
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.
Speaker 1 (43:33):
The way that so many people with tuberculosis are treated
just shows this lack of trust in them as individuals
who also want to they don't want to be sick
with this, Like it just sort of is that non
compliance term really kind of has these connotations of like, well,
they just don't care enough. It's like, of course they do.
How could that be the conclusion, yeah right, yeah.
Speaker 2 (43:55):
Right, Or that they're somehow like not dedicated, they're not
adequately you know, they're not out of quickly hard working
or committed to their own health or whatever. But like,
you know, first off, lots of people struggled to take
their medication. I struggled to take my medication. I don't
know exactly why. I think some of it has to
do with stigma, with this idea that you know, somehow
I'm less I take medication to treat OCD in major depression.
(44:18):
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
(44:39):
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
(44:59):
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.
Speaker 1 (45:18):
Yeah, I think these are these are aspects that aren't
don't always come out in medical literature unless it's about
this specific you know, the context of non compliance and
what that what that actually reveals, given that some of
this awful side effects of these tuberculosis medications. Seems like
one way to overcome this would be to develop new
(45:40):
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.
Speaker 2 (46:00):
Yeah, So this is a place of encouragement for me,
And I'm sorry if this has been a largely discouraging conversation,
but this really is a place of encouragement for me.
Between nineteen forty four and nineteen sixty five, we developed
something like eight classes of drugs to treat tuberculosis, and
then between nineteen sixty six and twenty twelve we developed none.
And all those years we could have been developing great
(46:22):
tools to treat TB, but we didn't because the profit
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,
(46:47):
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,
(47:08):
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
(47:29):
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
(47:50):
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
(48:13):
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.
Speaker 1 (48:21):
Yeah, that is really encouraging, and I think that it's
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
(48:43):
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
(49:07):
to matter.
Speaker 2 (49:09):
Every dollar we invest in TV brings forty dollars in
future health benefits, And every time we end a chain
of transmission of TV, it means less TB in the world.
You know, TB is a curable disease, which means that
we could eliminate it. We could live in a world
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,
(49:31):
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
(49:53):
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
(50:15):
and find out the benefits of not having to pay
the cost of not treating TB.
Speaker 1 (50:19):
Not to mention that so many of the structural improvements
that would help to reduce the burden of tuberculosis would
make a major impact in so many other aspects of
infectious disease. It's that totally, especially when there's interactions between
tuberculosis and your immune system, and if you're infected with
this disease and tuberculosis, then that maybe that makes active
(50:42):
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.
Speaker 2 (50:53):
Yeah, and I think you're right that when we invest
in a disease like tuberculosis, we also invest in a
stronger healthcare system. When we're doing active case finding for TB,
we're also checking people's blood pressure. We're also checking for diabetes,
we're also checking, you know, for other noncommunicable diseases. And
that's a really important thing to understand that stronger healthcare
(51:14):
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.
Speaker 1 (51:29):
Yeah, it's it's all, it's all. It's like they're all connected.
Speaker 2 (51:33):
You know, it's almost like they're all connected.
Speaker 1 (51:35):
How about that. Yeah, So I want to wrap up
on a hopeful note and with two with two final
questions for you. The first is Henry. What is what
is Henry up to these days?
Speaker 2 (51:50):
So? Henry was sick for a really long time and
it took a long time to cure Henry. But thanks
to the Sierra Leonian Ministry of Health and the organization
Partners in Health, the medicine that Henry needed was finally
made available to him and he survived TB. He was cured.
He is a healthy, happy young man now. He's twenty
(52:10):
four years old and he's a student at the University
of Sierra Leone. He's studying business and human resources. I'm
immensely proud of him. We're very close and he's just
doing awesome.
Speaker 1 (52:22):
It's amazing. And he has a TikTok channel. Is that right? Oh?
Speaker 2 (52:26):
Yeah, he definitely has a TikTok And he also has
a YouTube channel and he wants you to subscribe, So
google Henry Writer YouTube.
Speaker 1 (52:34):
Good.
Speaker 2 (52:34):
Good.
Speaker 1 (52:36):
So we have this roadmap for how to make things
better with tuberculosis. We know what we can do, we
have people working on it. What are you most hopeful
for in the next in the near future, in the
maybe distant future, what do you most hope to see happen.
Speaker 2 (52:55):
Well, we have a really good roadmap for how to
eliminate TB globally as a public health threat. And it
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
(53:15):
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
(53:36):
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
(53:56):
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
(54:17):
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.
Speaker 1 (54:34):
Yeah, I completely agree, John. It has been so fantastic
to chat with you and an honor to meet you,
truly thrilling. Thank you so much for a great conversation.
Speaker 2 (54:45):
Thank you so much. Erin. It's so cool to be
able to meet you and to be on the pod.
I really appreciate it.
Speaker 1 (55:09):
A huge thanks again to John Green for taking the
time to chat with me. That was such a great conversation.
For more tuberculosis talk, check out our website this podcast
will kill You dot com. We're all post a link
to where you can find Everything is Tuberculosis, as well
as a link to John's site, and don't forget you
can check out our website for all sorts of other
(55:31):
cool things, including but not limited to, transcripts, quarantine and placy,
berita recipes, show notes and references for all of our episodes,
links to merch our bookshop, dot Org, affiliate account, our
Goodreads list, a first hand account, form, and music by Bloodmobile.
Speaking of which, thank you to Bloodmobile for preventing the
music for this episode and all of our episodes. Thank
(55:53):
you to Leana Squilacci and Tom Bryfogel for our excellent
audio mixing. And thank you to you listeners. Listen, I
hope you liked this episode and our loving being part
of the TPWKY book Club. A special thank you, as
always to our fantastic patrons. We appreciate your support so
(56:13):
very much. Well, until next time, keep washing those hands.
Hosts And Creators
Erin Welsh
Erin Allmann Updyke
Popular Podcasts
The Breakfast Club
The World's Most Dangerous Morning Show, The Breakfast Club, With DJ Envy And Charlamagne Tha God!
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
Decisions, Decisions
Welcome to "Decisions, Decisions," the podcast where boundaries are pushed, and conversations get candid! Join your favorite hosts, Mandii B and WeezyWTF, as they dive deep into the world of non-traditional relationships and explore the often-taboo topics surrounding dating, sex, and love. Every Monday, Mandii and Weezy invite you to unlearn the outdated narratives dictated by traditional patriarchal norms. With a blend of humor, vulnerability, and authenticity, they share their personal journeys navigating their 30s, tackling the complexities of modern relationships, and engaging in thought-provoking discussions that challenge societal expectations. From groundbreaking interviews with diverse guests to relatable stories that resonate with your experiences, "Decisions, Decisions" is your go-to source for open dialogue about what it truly means to love and connect in today's world. Get ready to reshape your understanding of relationships and embrace the freedom of authentic connections—tune in and join the conversation!