icon_Close
comments
Not seeing your comment? Read our Content Moderation Policy.
Log in or sign up to comment
icon_CheckmarkRed
Please verify your account
Resend verification email
Leave a comment
icon_Bold
icon_Italics
icon_Link
Submit

Lung Story Short

A book about tuberculosis, and everything else

Here’s how John Green turned a forgotten disease into a #1 NYT bestseller.

Bill profile picture

What do Adirondack chairs, Stetson hats, the city of Pasadena, and World War I have in common? According to John Green, all of their origin stories include tuberculosis.

In his new book, John argues that it’s impossible to separate the deadliest disease in history from, well, the rest of history. Adirondack chairs were designed by a man who vacationed in the New York mountains—a popular spot for TB patients seeking fresh air—and soon became staples of sanatorium porches across the country. John B. Stetson, who had TB himself, traveled west for dry mountain air and invented the cowboy hat to protect from sun, wind, and rain. Pasadena became a hub for TB treatment in the late 1800s, and TB “tourism” was a major driver of the city’s early economy, real estate, and identity. And the teenage assassins who killed Archduke Franz Ferdinand, which kicked off World War I? They were more willing to die for their cause since they were already dying of TB. 

No wonder John calls this book Everything Is Tuberculosis. In so many ways, TB shaped the world we live in. Even though the disease is now both rare and treatable in rich countries, in poorer places it’s on the rise and still a death sentence for so many.  

John is best known as the author of some of the best young adult novels of all time (at least according to my daughter Phoebe, whose encouragement led me to read The Fault in Our Stars and Turtles All the Way Down). So a lot of people were surprised when he announced that his next book would be about global health—about a disease most people in the western world think of in the past tense.

I wasn’t. After all, I first met John over a decade ago, when he joined me on a Gates Foundation trip to Ethiopia. While traveling, we talked about a lot of the big questions John wrestles with in Everything Is Tuberculosis—like why the place a person is born influences their odds of surviving childhood (or childbirth), and what people like us can do to increase those odds.

Since then, John has been an invaluable partner to the foundation, bringing his curiosity and clarity to our events and helping raise awareness of our work. But he’s also become a powerful advocate for global health in his own right. I don’t know anyone else who could turn a book about tuberculosis into a number one New York Times bestseller.

Everything Is Tuberculosis is poignant, smart, and at times infuriating. At its heart is the story of a boy named Henry, whom John met at a TB clinic in Sierra Leone. Henry was just six when he started showing classic signs of the disease: fatigue, weight loss, night sweats. But the first tests he got came back negative, so he was sent home from the hospital. By the time he was eventually diagnosed, Henry was already very sick.

He began treatment with the standard cocktail of decades-old antibiotics. It’s a brutal regimen that involves months of pills, painful injections, constant side effects—and, once the infection starts to subside, aching hunger from having an appetite again. The drugs only work if they’re taken consistently and on schedule, but that’s often unrealistic for patients. In much of the world, TB treatment means walking miles to a clinic, missing work or school, going into debt, and facing social stigma and isolation. Even though Henry’s mom did everything she could to support him, there were interruptions to his treatment, and eventually the TB became drug-resistant.

In the end, Henry got lucky. Even as he got sicker and ran out of options, his doctors wouldn’t give up on him. They fought to get him access to a personalized drug regimen—something that’s rarely available to kids in poor countries. That care ended up saving his life, and today Henry is thriving. After years stuck in the hospital, he’s caught up academically and now in university (and even has a YouTube channel where he shares his journey and advocates for other TB patients). John doesn’t romanticize Henry’s story as some kind of miracle. Instead, he uses it as proof: that TB is curable, that good care works, and that the real question isn’t whether we can save lives—but whether we’re willing to make that care available to everyone.

Even though John finished writing the book last year, he nails the urgency of this moment. He shows how a disease that most people in rich countries have forgotten is still killing over a million people a year, and how easily that number could keep climbing. That’s especially true now, as foreign aid cuts disrupt TB care across the globe. Henry might not be alive today if it weren’t for organizations like Partners In Health—funded in part by U.S. health aid—which fought to get him the treatment he needed. These aid cuts will be devastating for kids like him, who may lose access to treatment altogether. They’ll also lead to more interrupted care, more cases, more drug resistance, and more strains of an infectious disease that will be harder and more expensive for the entire world to contain.

This is a book about the central challenge of global health today: the reality that, in John’s words, “the cure is where the disease is not, and the disease is where the cure is not.”

A book about tuberculosis could be pretty boring, but John makes it super compelling by weaving in TB’s long and strange history, from the myth that it only afflicted white people, to the theory that it inspired creative genius, to its influence on Victorian beauty standards. (I didn’t know about those last two… or the Stetson hats.) If you’re familiar with John’s work, this approach won’t surprise you. He has a gift for getting people to care about things they might not think are “for me,” whether that’s poetry, astrophysics, or infectious disease.

John ends Everything Is Tuberculosis with a stirring call to action. He makes the case that saving lives from TB isn’t really a scientific challenge anymore; it’s a moral one. I largely agree. But I also think there are more reasons for hope than the book lets on.

While John is clear-eyed about the failures of the past and present—the slow pace of progress, the sky-high prices of new TB drugs, the inequality that determines who gets treated and who doesn’t—he doesn’t spend much time on what comes next. Having spent the last two-and-a-half decades investing in the science behind TB care through the Gates Foundation, I’ve seen a different side of the story. I know what’s in the pipeline, and I know what’s possible.

Today, we’re closer than ever to breakthroughs that could change everything about how we treat and even prevent TB: shorter drug regimens, better diagnostics, and even vaccines. These tools will only make a difference if they’re affordable enough to reach kids like Henry. But I think it’s important to recognize that the companies often criticized for pricing are also, ironically, the only ones that have been willing to invest in TB at all. We need to keep working with them as partners, keep the innovation coming, and keep bringing costs down.

If we do, we can make Henry’s story of survival the norm, not the exception—and make tuberculosis a disease of the past, not the future.

icon_Share
Share
icon_Comments
Comments
Get my newsletter
icon_ArrowBack
icon_Close
Log in or sign up
Want good news in your inbox? Become a Gates Notes Insider today to get my newsletter and receive updates on inspiring stories and remarkable heroes from around the world. You'll learn about the incredible progress being made in global health, energy innovation, and more.
Your email
Please enter a valid email address
Next
icon_Close
icon_Search
POPULAR SEARCHES