Yes, tuberculosis is still a thing — John Green's new book tells us why
Green discussed Everything Is Tuberculosis on Bookends with Mattea Roach
American writer John Green is perhaps best known for his blockbuster young adult novels, including The Fault in Our Stars and Paper Towns, that feature compelling, brilliant and sometimes frustrating teenagers as they try and find where they fit in the world.
His latest, a nonfiction book exploring the history and prevalence of tuberculosis, aptly titled Everything Is Tuberculosis, may seem like a major departure.
But for Green, it's not all that different.
"I'm still writing about smart teenagers who like poetry," he said on Bookends with Mattea Roach. "So in that sense, it's actually quite close to the work that I've done over the years."
One of the smart teenagers in question is Henry, a young man who Green met when visiting a tuberculosis hospital Sierra Leone — he's the glue that holds together Everything Is Tuberculosis — and part of the reason Green was inspired to write the book.
"If I hadn't met Henry, I wouldn't have written this book because it's really, in a lot of ways, my attempt to share the story that Henry so generously shared with me."
In 2019, Green and his wife visited the Lakka Government Hospital while traveling with the nonprofit organization Partners In Health.
When Green first got there, a young man named Henry grabbed him by the T-shirt and started showing him around.
"He was the funniest, sweetest kid I could imagine," said Green. "He seemed to be about nine, about the same age as my son, and spoke good English in addition to Creole and other languages. And we had a great conversation as he walked around the hospital."
Initially, Green had assumed that Henry was the son of one of the doctors, but soon learned that he was actually one of the patients they were most concerned about.
"It turned out Henry wasn't nine like my son. He was 17. He'd just been stunted by malnutrition and then by tuberculosis."
Meeting Henry launched Green into a research rabbit hole. He tried to understand why this curable and treatable disease is still the world's deadliest, killing 1.25 million people in 2023, according to the World Health Organization.
"What's wrong with my information feeds that I don't know about this? What's wrong with the structures that we've built for our world when, since tuberculosis became curable in the 1950s, we've allowed over 150 million people to die of it?" he wondered.
Perception is everything
In Everything Is Tuberculosis, Green looks into the different ways tuberculosis has been perceived over centuries — and how that shapes who lives and dies from it today.
Before the 18th century, tuberculosis was seen as something immoral and related to poverty. But as more wealthy people succumbed to it, it became romanticized as an illness of creative genius and beautiful people, so much so that beauty trends evolved to match the symptoms of someone with the illness — pale skin, rosy cheeks and dilated pupils.
"It is very strange to think that this disease that, at the time, was killing one out of every three people became so romanticized," said Green. "But in a way I think it makes sense, because when you don't know how to make sense of an illness, you stigmatize it."
When you don't know how to make sense of an illness, you stigmatize it.- John Green
"But then if you can't stigmatize it away, if it's not just killing marginalized and vulnerable people. It's also killing the rich and the famous and the successful — eventually you have to come up with some other way of imagining it."
The perception shifted yet again when tuberculosis was understood as an infectious disease and not an inherited disease. It became seen once more as a "disease of filth," that affects people in poverty, in difficult living situations.
"When we stigmatize tuberculosis and say it's only a disease of poverty or a disease of filth or whatever … we end up marginalizing the lives of people living with the disease and we end up making their lives even harder," said Green on The Current.
Telling human stories
Throughout Everything Is Tuberculosis, Green tells the stories of people like Henry — other advocates and tuberculosis patients — in an effort to stop this condemnation.
"My own experience is that when it comes to huge statistics, it's very difficult to internalize them," he said.
In telling individual stories, Green hopes that readers will grasp "the emotional reality of what it means to live with this disease in the 21st century and the absolute horror that we continue to allow people to die from it."
Henry, thanks to "extraordinary" efforts from his doctors, the Sierra Leonean Ministry of Health and Partners in Health, was able to get the newest personalized treatments to survive his tuberculosis. However, many patients like don't have access to expensive life-saving medication, said Green.
He compared Henry's experience getting treatment for tuberculosis to that of his brother, who had cancer and went through chemotherapy and radiation.
The assumption is that my brother deserves access to the newest highly personalized medical treatments. The assumption is that Henry doesn't.- John Green
"It cost about 150 times more to cure my brother's cancer than it costs to cure Henry's tuberculosis. And yet my brother was never once told, 'We're not sure if this makes sense. We're not sure if this is a good investment. We're not sure if we can afford this as a community.'"
"But that's what Henry was told when it came to him getting access to the newest and best drugs. The assumption is that my brother deserves access to the newest highly personalized medical treatments. The assumption is that Henry doesn't."
In Everything Is Tuberculosis, Green discusses the privilege of using his platform — garnered by the success of his young adult novels — as a megaphone to amplify stories that are important to him and that motivate him to not give up hope.
"It's really easy to do harm with your megaphone, but I feel like tuberculosis is a good place to use it, not so much because I'm fascinated by the bacteria itself or anything like that, but I think that it is an exemplar of diseases of injustice. And those diseases of injustice are ones that we have the tools now to battle effectively."
By outlining those tools in Everything Is Tuberculosis, Green joins the fight against the stigmatization of the disease and the harm it's caused — all while recognizing how it's shaped the world we live in — and hoping for a future without it.
Interviews produced by Bridget Raymundo and Alison Masemann, with thanks to Ailey Yamamoto.
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