Author John Green wants to make you care about tuberculosis

NEW YORK – You can roughly guess a person’s age based on how they know John Green.

Older millennials met Green and his brother, Hank, on YouTube in the late 2000s, when they were performing songs about Harry Potter and cultivating a fan base of “Nerdfighters”.

Younger millennials probably know the American as the author of The Fault In Our Stars (2012), and other best-selling young-adult novels that feature complex and frequently tragic teenage characters.

Gen Zs herald Green as a beloved professor. Since 2012, he has hosted video lessons on history, literature and religion for an educational web series called Crash Course.

Members of Generation Alpha now comprise many of his 2.8 million followers on TikTok. Fans are drawn to the brothers’ inside jokes and eclectic interests, such as a holiday centred on a photo of Green with a moustache. But even dedicated Nerdfighters were surprised by Green’s intense focus on eradicating tuberculosis (TB), a disease that kills 1.6 million people annually.

TB is caused by a bacterium that is estimated to infect one-quarter of the world’s population, but the disease receives little attention in wealthy nations.

Green, 47, has emerged as an unlikely spokesman in the global effort to fight the disease. His latest project, a book called Everything Is Tuberculosis, interweaves the social and scientific histories of tuberculosis with the present-day story of a young man from Sierra Leone named Henry Reider.

The book will be published in March by a division of Penguin Random House.

In a recent interview, Green described the book as his attempt to understand how TB could be both entirely curable and the deadliest infectious disease in the world.

It explores what the disease’s persistence as a scourge “says about us as a species – what that says about the worlds we’ve chosen, the world we might choose instead”, he said.

In countries like the United States, where testing and treatments are readily available and the prevalence of the disease remains low, TB is rarely mentioned outside of global-public-health labs and classroom discussions of 20th-century literature.

But it thrives where tests and medication are expensive or otherwise inaccessible, funding is lacking and people are malnourished and live in poorly ventilated quarters.

Henry and Shreya

Green’s interest in TB arose in much the same way as he wrote, in The Fault In Our Stars, about falling in love: slowly, and then all at once.

He had read about the disease, but it was not until a 2019 trip to Sierra Leone that he experienced TB up close. Green and his wife, Sarah, had spent their visit touring maternal clinics and hospitals supported by Partners In Health, a non-profit co-founded by the physician Paul Farmer. On the last day, guides took them to Lakka Government Hospital, the country’s only dedicated TB facility.

“It had been neglected, and like the rest of the healthcare system in Sierra Leone, was deeply impoverished,” Green recalled.

There, he bonded with Henry, a friendly boy who shared his own son’s name.

Henry was “one of those preternaturally charismatic young people who just feels comfortable and walks you around and shows you everything”, Green said.

Assuming that Henry was a staff member’s child, Green asked the doctors about him and was told that he was being treated for multidrug-resistant TB.

“He’s 16 years old, and the only reason you think he’s nine is because he’s so emaciated by tuberculosis,” Green was told.

As Green soon learnt, Henry was one of many patients who desperately needed access to bedaquiline, a life-saving drug manufactured by Johnson & Johnson.

Another was Shreya Tripathi, a 19-year-old TB patient in India. In 2017, she successfully sued her country’s government for access to the medication, but she died in 2018 from irreversible lung scarring.

A doctor who provided expert testimony in Tripathi’s case later told Green that in her final months, Tripathi read and reread The Fault In Our Stars, his novel about terminal cancer patients.

The story stuck with Green. In 2023, after being asked to speak at a high-level meeting at the United Nations, he noted that Tripathi had been alive at the previous iteration of the meeting.

“She didn’t really die of tuberculosis,” he said. “She died of a flawed patent system. She died of government bureaucracy. She died of a court system that moved too slowly.”

Green’s initial foray into advocacy for TB treatment came in July 2023. He posted a video on YouTube berating Johnson & Johnson for its role in inflating the price of brand-name bedaquiline.

“Tell your friends about this injustice,” he implored viewers. “Tell your family. Tell the internet. Because the only reason Johnson & Johnson executives think they can get away with this is that they think we aren’t paying attention in the part of the world where they sell most of their products.”

“When I was making that video,” Green said recently, “I was thinking about Shreya, I was thinking about Henry.”

Beyond philanthropy

The call to action was viewed more than 1.4 million times, and days later, Johnson & Johnson agreed to let generic manufacturing proceed for the drug, effectively cutting the treatment’s price from US$1.50 (S$2) to US$0.50 a day.

Green pointed out that the decision culminated “a very, very long process” between Johnson & Johnson, Partners In Health and Doctors Without Borders. Even so, he added, the timing was notable.

“Johnson & Johnson certainly went to extraordinary lengths to argue that it signed, sealed and delivered this deal X number of weeks before my video,” he said. “But I can’t help but notice that it didn’t announce it until after.”

A Johnson & Johnson spokesperson said that the company’s action was taken “to address the misperception that access to our medicine was limited or restricted”.

Professor of global health and social medicine Carole Mitnick at Harvard Medical School, who is a senior research associate at Partners In Health, described Green as a welcome voice.

“I don’t think anybody has ever captured the attention of such a large number of people when talking about TB until John entered the scene,” she said. “Maybe it’s just more of us screaming into the great void, but I do have to believe that having more voices raising attention about these issues can contribute to changes.”

Green generated another social media storm in September 2023 with a series of videos and graphics on YouTube, TikTok and X pressuring the makers of a TB diagnostic test to lower the price of its test cartridges.

A week later, the test’s makers agreed to reduce the price of the cartridges by 20 per cent. Mr Stijn Deborggraeve, a diagnostics adviser for Doctors Without Borders, said that global health groups like his had mounted similar pressure for years, to no effect.

Other celebrities, including American actors Brad Pitt and Angelina Jolie, have donated large sums to TB eradication efforts. But Green said that he sought to go beyond philanthropy by engaging his fans, the Nerdfighters.

In a 2009 video, he cheekily defined a Nerdfighter as “a person who, instead of being made out of, like, bones and skin and tissue, is made entirely of awesome”.

What began as an online fandom has morphed into an organised collective that takes part in real-life meet-ups and annual charity drives.

So far in 2024, the Nerdfighters have raised US$3.5 million for non-profit organisations including Save The Children and Partners In Health. NYTIMES