The latest twist in John Green’s anti-tuberculosis story: working with governments

WASHINGTON — John Green, the popular novelist and YouTube star, gave the health care world a taste of his clout last year when he and his “Nerdfighter” fan base pressured corporations to cut prices for tuberculosis treatment. This week, he announced a more collaborative strategy for fighting tuberculosis — a public-private funding partnership with USAID and the Philippines.

Green and his family are contributing up to $4 million of the $57 million in new funding to test and treat tuberculosis in the Philippines. He is hoping to see an expansion of public-private funding models to accelerate the fight against TB, which kills 1.5 million people globally each year.

Green and his brother, Hank, are members of the 2024 STATUS List, both for their TB campaign and for Hank’s science education around his treatment for Hodgkin’s lymphoma, now in remission. Last July, after John posted a scathing YouTube video and started a media storm on X, Johnson & Johnson agreed not to enforce a secondary patent of its TB pill bedaquiline in 134 low-and middle income countries, allowing for a less-expensive generic version. The diagnostics company Cepheid also lowered the cost of one of its test cartridges for the GeneXpert after John started another online campaign.

STAT caught John Green toward the end of a long day of meetings on Capitol Hill about expanding access to tuberculosis treatment. This transcript has been edited for brevity and clarity.

You have gotten a lot done over the last year. You started raising awareness among your fans, and you also advocated for Cepheid and J&J to lower their prices of diagnostics and therapeutics. And now you’ve entered —

For the record, Cepheid still needs to lower their prices on diagnostics, but yes.

Now you’ve announced that you are entering into a public-private partnership with USAID and the Philippines to fund comprehensive TB care in the Philippines. I’m wondering, what is your ultimate goal or dream for your TB advocacy?

The dream is to live to see a world where tuberculosis is no longer a public health threat. That’s my dream. And there’s no reason why we can’t make it a reality. The only reason anyone dies of tuberculosis is because of failures of human-built systems. And so I really believe we can see a world without TB, or at least a world where no one dies with TB.

So that’s my dream. But, a dream is all fine and good, but you need a road map to get there. And for me, this public-private partnership with the government of the Philippines and USAID is the road map. I really hope that this project can be a beacon and a blueprint for how we radically reduce the burden of tuberculosis globally. We know that comprehensive care works. We know that when you search for cases, treat the people who you find who are sick, and offer preventative care to their close contacts, you drive down rates of tuberculosis. We know that because we did it in the United States in the 1950s. And to me, I just feel like it’s long past time for everyone in the world to have the same opportunities to live in a world where they don’t have to worry about TB.

You mentioned that you believe Cepheid still needs to lower their prices. I’m curious, when it comes to your funding partnership, what is the impact of these company campaigns on how far those dollars will go? How do all of your strategies work together?

I mean, it’s very significant that the price of the standard TB test cartridge has dropped by 20%. That essentially allows us to test 20% more people with molecular testing. Which is amazing, because too often people are still being diagnosed via smear microscopy, which is totally insufficient in 2024. It misses a lot of cases — it especially misses cases among children. And so having more GeneXpert tests is essential to having good tuberculosis care. That said, the prices of those test cartridges are still too high. And Cepheid knows that. That’s an ongoing conversation, and the work there isn’t over.

And when it comes to the bedaquiline, the price of bedaquiline has dropped really dramatically. And it will continue to drop — we expect it to cost half as much or even less than it cost a year ago soon. So the advocacy goes hand in hand for me with the work of bringing governments together and trying to fund TB eradication efforts where we can.

I was thinking about how you can clearly see the seeds of what you are doing right now in your early career, this time before you were even aware of the global burden of tuberculosis. Back in 2012, you and your brother started The Foundation to Decrease World Suck to raise money for charities, including Partners in Health and Save the Children. Today, your major mission seems to be advocating for access to TB care. What brought this into focus for you?

Well, my brother and I have been interested in global health for a long time, and we’re not only interested in tuberculosis. We have a project in Sierra Leone with Partners in Health working on radically reducing maternal and child mortality in the Kono District there. I see global health as the ultimate social justice issue because, to me, these global health inequities are both a form and expression of injustice.

The reason I think I’ve become obsessed with tuberculosis is because it’s such a glaring example of global injustice. This is a disease that is curable, it’s preventable. And yet, it remains the deadliest infectious disease in the world. And I didn’t know that. I didn’t understand that tuberculosis is this present-tense catastrophe. Once I came to understand that, I just felt like I had a responsibility to myself and to the people I know and care about who are TB survivors to try to do what I could.