On tuberculosis (with John Green)

Summary

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Podcast Summary: Drug Story – "On Tuberculosis" (with John Green)

Host: Thomas Goetz
Guests: John Green (author, YouTuber), Dan Weissman (host of An Arm and a Leg), Emily Pisacreta, Tahir Amin, Pumeza Tisile
Date: February 17, 2026

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Episode Overview

This episode of Drug Story investigates the tangled history and present-day challenges of tuberculosis (TB)—with a particular focus on the life-saving drug bedaquiline, the corporate patent system, and the global movement attempting to make TB drugs affordable and accessible. The episode, hosted primarily by Dan Weissman and featuring bestselling author and advocate John Green, highlights how patients, lawyers, and a worldwide community of "nerdfighters" confronted pharmaceutical giant Johnson & Johnson over drug patents that restrict access to vital TB medication.

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Key Discussion Points & Insights

1. The Power and Flaws of Drug Innovation

• Historical Context of TB
  • Host Thomas Goetz recounts the history of TB, referencing his book The Remedy:

    "Since Koch's discovery of the bacteria in 1882, more than a billion people have died of the disease, even with antibiotics. Even today, people die of TB—more than a million people a year." (01:40)

  • TB's initial "cure" by Koch was debunked; true breakthroughs came with streptomycin (1943) and other antibiotics.
  • Despite effective drugs, TB remains deadly, especially in Asia, Africa, and India.

2. John Green's TB Activism and Community Impact

• Personal Connection and Storytelling

  • John Green shares his experience visiting a TB hospital in Sierra Leone, where he met a child, "Henry," who was actually a 16-year-old stunted by TB and desperately needed access to bedaquiline.

    “He was just really stunted and emaciated by tuberculosis... if we can't get the new treatment cocktail to him, he has a very low chance of survival.” (12:20–13:19)

  • This life-and-death encounter drove John Green’s obsession with tackling TB and its global inequities.

• Mobilizing the Nerdfighters

  • Green leveraged his online following to highlight that Johnson & Johnson was using secondary patents to keep monopolizing bedaquiline and thus keeping it out of reach for millions in poorer countries.

    "The only reason Johnson & Johnson executives think they can get away with this is that they think we aren't paying attention..." (04:37)

  • Within a week, Johnson & Johnson responded by allowing a cheaper generic to be distributed more widely—a testament to advocacy’s power but also its limitations.

3. How Pharmaceutical Patenting Works Against Public Health

• Patent Thicketing/Evergreening Explainer

  • Emily Pisacreta and Tahir Amin explain how pharma companies file dozens (or even over a hundred) overlapping patents to extend exclusivity and maximize profits.

    “74 patents could have lasted until 2031.” (17:00) “The 12 best-selling drugs in the US had an average of 131 patents each. If all of those patents stick, that's an average of 38 years of patent protection.” – Tahir Amin (19:18)

  • This "life cycle management" keeps drug prices high and generics off the market—impacting not only Americans but the entire world.

• Bedaquiline’s Case

  • Johnson & Johnson filed a secondary patent on a "salt formulation" of bedaquiline four years after the original, extending their monopoly.

    "The most important was the original formula... the second most important was the salt formulation..." (20:11)

  • Filing secondary patents late in the drug development process is strategic; it delays generic competition.

4. India’s Legal Fight: Section 3D and Global Implications

• Birth of Section 3D

  • Indian activists and lawyers (notably Tahir Amin) secured a law stating additional patents for known drugs must show increased efficacy—making it harder for companies to "evergreen."

    “If you are going to try and patent a new formulation... you have to prove that it increases the drug’s efficacy…” – Emily Pisacreta (27:11)

  • After years of legal struggle, in March 2023, India’s patent office rejected Johnson & Johnson’s secondary patent on bedaquiline, clearing the way for generic manufacture.

    "India rejected Johnson & Johnson’s secondary patent on bedaquiline." (31:01)

• TB Survivors as Advocates

  • Survivors like Pumeza Tisile and Nandita Venkateshan led the fight, bringing personal stakes to the legal battle.

    “Fumesa could see her lips moving, but couldn’t hear her voice... Like about half the people given this treatment, she lost her hearing for good.” (29:46)

5. The Global South's Influence on US Patent Thinking

• Reverse Advocacy
  • Global South’s strategies—like India’s Section 3D—are now informing advocacy efforts in the United States, aiming to reform the US patent landscape that still drives up global drug prices.

    “US drug companies shaped the World Trade Organization policies regarding drug patents, the policies that force places like India to recognize patents…” – Emily Pisacreta (37:08)

  • IMak (Initiative for Medicines Access and Knowledge) has shifted its focus largely to US advocacy.

6. Reflection on Activism, Advocacy, and Hope

• Incremental Gains Matter
  • Both John Green and Tahir Amin note that progress can be slow, and no single victory is ever enough—each step forward matters.

    “It's like you’re trying to move the ocean and you have a little bucket… And I find a lot of beauty in that.” – John Green (40:16)

  • Ultimately, activism needs both immediate direct action (such as the nerdfighter mobilization) and deep structural reform (legal and policy challenges).

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Notable Quotes & Memorable Moments

• On hope and powerlessness:

  “I felt powerless before it... It was the first thing I thought about in the morning and the last thing I thought about before I went to sleep: How did we end up in a world where the world's deadliest infectious disease is largely ignored in the richest parts of the world?” – John Green (22:43–23:02)

• On evergreening:

  “Activists and experts call this kind of thing patent thicketing or evergreening... Drug companies call it life-cycle management.” – Dan Weissman (19:37–19:42)

• On social benefits of patents:

  "The social benefit actually goes up when you get the initial sort of a certain period of protection. But once you start stretching it out, the social benefit goes down." – Tahir Amin (37:56)

• On global influence:

  "The US is the heart of the global patent regime. US drug companies shaped the World Trade Organization policies... and it's U.S. patent officers who train examiners around the world." – Emily Pisacreta (37:08)

• On incremental activism:

  "It's like you're trying to move the ocean and you have a little bucket... but I am going to go ahead and fill up this bucket and walk a hundred feet and pour it in the ditch and then I'm going to walk back to the ocean... and I find a lot of beauty in that." – John Green (40:16)

• On collective action:

  "When tens of thousands of people do something insignificant together, it becomes very significant." – John Green (43:19)

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Key Timestamps for Important Segments

• 00:01–03:40 – Thomas Goetz gives the history of TB and sets the stage for the episode and handoff to Dan Weissman/John Green.
• 03:45–08:09 – Dan Weissman introduces John Green and his online influence; background on the nerdfighter community.
• 10:41–13:19 – John Green recounts his visit to the TB hospital in Sierra Leone and the story of "Henry."
• 16:26–19:18 – Emily Pisacreta and Tahir Amin explain patent thicketing with insulin and other US drug examples.
• 20:11–21:57 – Technical discussion of bedaquiline’s salt formulation patent and patent strategies.
• 24:45–27:23 – History of India's Section 3D and its impact on drug patents.
• 29:03–31:40 – Fumesa Tisile’s account of her TB experience and the MSF-led legal challenge in India.
• 33:25–34:23 – John Green’s “Barely Contained Rage” video and its community impact.
• 36:12–39:11 – Tahir Amin on why India’s precedent must inform global and US patent reform.
• 40:16–41:14 – John Green’s reflection on movement-building and incremental change.
• 43:19 – John Green's call to action for collective bucket-moving activism.

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Takeaways

• The story of bedaquiline and TB is emblematic of the wider global fight over drug patents, access, profit, and innovation.
• "Patent thickets" and evergreening practices keep essential drugs out of reach for millions—even when they could be produced cheaply.
• Grassroots and legal advocacy, as seen in India and through John Green’s nerdfighter community, can create real (if limited) change.
• Deep, systemic reform of the global patent regime, with lessons drawn from the Global South, is necessary for true health equity.

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Transcript

[A]

This is Drug Story. I'm Thomas Goetz. A few years ago, I wrote a book called the Remedy. It was about tuberculosis, which is the deadliest infectious disease in human history. The bacteria that causes TB was first identified in 1882 by a German physician and researcher named Robert Koch. Koch was an amazing scientist, but quite a flawed human being. This discovery was perhaps the biggest breakthrough in the history of medicine up to that time. Because tuberculosis was a horrible disease in the US and other countries, TB was the leading cause of death. At the time, more people died of TB than heart disease or cancer or any non infectious disease. So to finally know what caused tb, a germ, well, that seemed like the first step to towards a cure. Koch's discovery got people hoping that it might be possible to actually vanquish this most deadly disease in human history. And sure enough, a few years after he discovered the bacteria that caused tb, Robert Koch announced that he had also discovered the cure, the remedy. Well, not to spoil the ending of my own book, but in actual fact, Koch's remedy did not work. It was debunked by none other than Arthur Conan Doyle, who was at the time also a doctor and a writer. He had just created a detective character called Sherlock Holmes. This is a crazy story. It's an amazing tale of science and innovation and ego. That's kind of why I wrote a whole book about it. And it's still worth reading, even now that you kind of know the ending. Well, it would actually take more than half a century before a true cure for tuberculosis came along. And that was streptomycin. It was an antibiotic that was discovered in 1943. Streptomycin works. It kills the bacteria that causes TB. And since then, several other antibiotics have been discovered that work even better. Because the thing about TB is it changes. The bacteria adapts to the drugs. It finds a way to evolve around the antibiotic and keep going. Since Koch's discovery of the bacteria in 1882, more than a billion people have died of the disease, even with antibiotics. Even today, people die of tb. More than a million people a year. In fact, they're mostly in Asia, Africa and India. These people die even though there are drugs that work that cure the disease. Well, in today's episode of Drug Story, I'm actually going to let someone else tell that story. John Green, the author of another book about TB called Everything Is Tuberculosis, you may have heard of it. It's been a bestseller for months. And he says some very nice things about my book in there, which I appreciate. So today I'm handing over Drug Story to John Green and the excellent journalist Dan Weissman. He's host of the NPR podcast An Arm and a Leg. In this episode of An Arm and a Leg, Dan does a great job explaining something that we've touched on several times here on Drug Story. The idea of patents for drugs, how that system went off the rails and how patents for a very effective drug for TB kept on being approved and how people with TB kept on dying. I think you're going to enjoy this episode a lot. Here it is.

[B]

Hey there. A little while ago I got to talk with this widely beloved dude.

[C]

My name is John Green and I'm a writer and YouTuber.

[B]

Now, John Green, writer may be the most likely to ring a bell. His best known book, the Fault in Our Stars, sold millions of copies, became a movie. But before he was such a big deal as a writer, he and his brother Hank were a big deal on YouTube and they still are. We'll get into the details of that a little bit later. But for now, the thing to know is pretty recently John Green got On the main YouTube channel he and his brother share and started talking to hundreds of thousands of people about how the drug maker Johnson and Johnson was using legalistic drug patent games to deny access to life saving tuberculosis medicine to millions of people in poor countries. And John Green wanted anybody listening to stand up and do something about it.

[D]

Tell your friends about this injustice, tell your family, tell the Internet. Because the only reason Johnson and 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, their band Aids, their Tylenol, their

[B]

Listerine, and a lot of the people who watch John Green's videos, the folks in this community call themselves nerdfighters, made a fair amount of noise. And a few days later, Johnson and Johnson seemed to blink. The company issued a statement saying it would allow a cheaper generic version of that TB drug to be more widely distributed. Here's John's brother Hank from their next YouTube video.

[E]

And this happened in a week. John, you made a video on Tuesday. It's Friday right now. Really proud to be a part of this community and I'm really proud to be your brother.

[B]

I mean that is a super fun story that we're going to get into how a self proclaimed nerd raised an Internet posse to influence a global pharma giant into doing something pretty decent sounding. We're definitely going to tell that story, but that story is Just a first impression because the whole thing is bigger and way more complicated, as John Green would tell you. As he told me, he was just adding his bit to a global movement, to advocates and lawyers in places like India, for instance, that have been doing the heavy, heavy lifting for years. And of course, to understand any of this, we're going to have to get into how pharma companies use drug patents and what it means. And that is part of where this story comes home. As John Green mentioned in his video, the story of this tuberculosis drug wouldn't normally draw a lot of attention in the U.S. tB isn't one of our top health issues, but the mechanisms at play with this tuberculosis drug, the patent games, are some of the same mechanisms that make so many drugs here so expensive. Drugs like Humira and insulin and pretty much everything else. And here's what's actually the most interesting part behind the first impression version of this story. Nerds in the US rally their online posse for people in what's called the Global South. There's a story about people and ideas from the Global south coming here to save the US from our own messed up drug patent system. Because they've figured out that unless we save ourselves, they're screwed too. This is an arm and a leg, a show about why healthcare costs so freaking much and what we can maybe do about it. I'm Dan Weissman, I'm a reporter, I like to challenge. So our job on this show is to take one of the most enraging, terrifying, depressing parts of American life and bring you something entertaining, empowering and useful. And so let's start with John Green. YouTuber. John and his brother Hank were among the people who invented the idea of being a professional, quote unquote creator on the Internet. Maybe kind of by accident at first, but they were hugely successful at it. In 2007 they started posting video messages to each other on this still kinda new website called YouTube. They thought a few hundred people might be interested if they kept it up for a year. And then Hank posted a song about waiting for the last Harry Potter book to come out.

[E]

I'm getting kinda petrified. What would Rob do if Hermione died? Or if Voldemort killed Hedwig?

[B]

Just for yucks, it got a million views, which early YouTube, that was huge. And they were off. Today that original YouTube channel has more than three and a half million subscribers. Hank now manages more than 100 full time employees and a whole bunch of contractors. And you know, it's impossible to sum up the thousands of videos they've created.

[E]

Good morning, John. Today we're gonna be making cinnamon toast two different ways.

[C]

Good morning, Hank. It's Tuesday, so I need your help

[D]

with the thing I'm working on. I need to learn some jokes, but not any jokes, but it's fair to

[B]

say digressive ranty arguments are kind of a staple.

[C]

Good morning, Hank. It's Tuesday. I kind of hate Batman.

[E]

Good morning, John. You pretty much got Batman entirely wrong.

[D]

Batman is just a rich guy with an affinity for bats who's playing out his insane fantasy of single handedly ridding Gotham of crime. How is that heroic?

[E]

Of course I know that your video on Tuesday wasn't really about Batman. It was just using Batman as a tool to say something.

[B]

The arguing may have seen something to do with why they call their community nerdfighters. But the idea is more that this is a community of nerds fighting for something, as they put it. Fighting to reduce the amount of suck in the world, partly by producing things that can be amusing and sweet and thoughtful, but also by giving money to worthy causes and encouraging others to do the same. Every year since the beginning, they've hosted a kind of online telethon called the Project for Awesome.

[A]

Good morning, Hank.

[D]

It's Thursday, December 17, 2009.

[B]

Time for the Project for Awesome. Hooray.

[C]

I got too excited about the awesome.

[B]

And it is super interactive. People upload videos pitching their favorite charities, they vote, they give. They've raised more than $30 million, and a lot of it has gone to an organization called Partners in Health, which provides incredibly effective health services in places like Haiti and Sierra Leone. And just to indulge my own tendency to nerdy digression here, a book about Partners in Health and its founder, Paul Farmer, is one of my favorite books of all time. It's called Mountains Beyond Mountains. And when we finally do start a book club, and I haven't forgotten making that suggestion here, I want to nominate it as one of our first picks. Anyway, the Green brothers are huge supporters of Partners in Health. And then three years ago, John started one of his weekly videos, this Way.

[C]

Good morning, Hank. It's Tuesday.

[D]

So over the next five years, our

[C]

families are donating six and a half million dollars to Partners in Health, Sierra Leone. Also, we need your help. But.

[B]

And here's where we get to tuberculosis. In the run up to that commitment, John Green visited Sierra Leone with his wife Sarah, and met some of the folks there from Partners in Health. And here's how he told the story to me. I'm not Going to interrupt on the

[C]

last day, two of the physicians from Partners in Health who we were visiting with said, hey, if it's not a big deal to you, we'd really like to stop by this TB hospital on the way back to the capital because we have a case we're really concerned about. I said, yeah, of course I'm not going to get in the way of actual doctoring, but I didn't think much of it at the time. We get to this TB hospital and immediately upon arriving the doctors go off to do doctor stuff and Sarah and I are just sitting there and this little nine year old Bo, who tells me his name is Henry, which is my son's name at the time, my son was 9, kind of grabs me by the shirt and starts walking me around and he takes me to the lab, shows me how to look into the microscope to see if a specimen has tuberculosis, introduces me to the lab technician, he takes me to the patient wards, he takes me to the kitchen where they make the food, he takes me all over the hospital and then eventually I end up in the room where the doctors are and the kid has departed. And I said, I just spent 30 minutes with an extraordinary child named Henry and he gave me a tour of the whole facility and I have no idea who he is. Is he somebody's kid? Is he a doctor's kid? And one of the doctors said, you know, that's what I thought when I

[F]

first got here about Henry because he

[C]

does seem like that.

[F]

And actually he's the case that we're so concerned about that we needed to come here.

[C]

And he wasn't nine, he was 16.

[F]

He was just really stunted and emaciated by tuberculosis.

[C]

And even though he was feeling pretty

[F]

good at the time, the doctors knew that his treatment for multi drug resistant TB was failing and that he needed access to a new cocktail that included bedaquiline, this drug that's been around in the US since 2013 but was at the time totally unavailable in Sierra Leone. And so that was my introduction to tb. And we were on our way to the airport and I said, what's going to happen? What's going to happen to that kid? And they were like, it's going to be a difficult path for him. If we can't get, if we can't get the new treatment cocktail to him, he has a very low chance of survival.

[C]

So that's the beginning of the story for me is meeting Henry.

[B]

I'm going to skip to the end of this part of the story. Henry's okay. He's alive because he did get the drug cocktail that included bedaquiline. But after that visit, John Green did not know that. And he started obsessing a bit about tuberculosis, reading about it, thinking about it. And over the last year or so, he started occasionally sharing, making videos about tb. And some of them were fun, short, nerdy explainers.

[F]

What if I told you that tuberculosis

[D]

gave us the cowboy hat? How did TB reinvigorate women's shoe fashions? How did tuberculosis help New Mexico become a state? I'm so glad you asked.

[B]

But he also dug into the deeper reason he'd become obsessed with tb. Cause it's a surprisingly big deal.

[D]

Still, it's almost certain that in the last 2,000 years, more people died just from tuberculosis than died from all wars combined. And before you think like, oh, but that's ancient history. No more people died last year from tuberculosis than died in war. And every year going back to World

[B]

War II, we fact checked that he is actually understating things by a lot. TB is a growing problem. In the middle of the 20th century, new medicines took TB off the list of diseases that most people in the rich parts of the world had to worry about. But it never got wiped out. And in less rich parts of the world, where access to the best treatments was spottier, drug resistant strains of TB developed and developed. But no new drugs came out. No drugs for drug resistant TB until Bedaquin, produced by Johnson and Johnson, the drug that did eventually help save Henry, the kid that John Green met in Sierra Leone. But bedaqualine is expensive, so people in less rich parts of the world often can't get it. One study estimated that eight out of nine people who needed treatment with a drug like Bedaquin weren't getting it. And of course, medicines stay expensive when they are under patent protection. Once the patent on a drug expires, anybody can make and sell a generic version of the drug, which, you know, competition usually allows prices to fall. And in one way, as John Green started making tuberculosis videos in 2022, it might have seemed like there was hope coming up because Bedaqualene was patented in 2003. Patents last 20 years, so by 2023, that patent would expire. Except not really, because it turns out patents on drugs have ways of living for way more than 20. So let's talk about drug patents and how they work and why they don't last just 20 years. And this is something my colleague Emily Pisa Creta has been interested in for a long time.

[G]

It's true. As I've said before on the show, I'm an insulin dependent diabetic. If I can't get insulin, I'm literally dead. And the insulin out there now is super expensive. And it got that way in part because of the kinds of patents on it, even though some of those patents are way more than 20 years old.

[B]

So, Emily, you've got a big interest in this question. How can a patent last more than 20 years?

[G]

And Dan, my answer to that question is a riddle. When is a patent not a patent?

[B]

Uh, okay, I give up. When is a patent not a patent?

[G]

When it's 74 patents.

[B]

Okay, yeah, this riddle's gonna need some explaining.

[G]

Okay, so for a while, I used an insulin called Lantus. It's a once a day long acting insulin made by the French company Sanofi. Sanofi first patented Lantus in 1994. So that should mean it's out of patent protection by the end of 2014. Right, except according to a report from a few years back, Sanofi actually filed for 74 patents on Lantus. And a lot of those patents were filed way after 1994. So one patent from 1994 would have lasted until 2014. 74 patents could have lasted until 2031.

[B]

Ah, hence the very specific answer for your riddle. I mean, I knew the principle. These insulin products have multiple patents on them, but 74 is more than I'd imagined. What are 74 things you even could patent?

[G]

I mean, for Lantus, there are patents on formulations to improve stability, like. All right, but there are also patents on the pen cartridge that Lantus comes in. And inside of that, a whole bunch of patents on the drive mechanisms, like the little plastic piston that lets you pick the right dose, these kinds of things.

[B]

Okay, now I noticed you said those 74 patents could have lasted till 2031.

[G]

That's right. As it turns out, in the case of Lantus, another drug maker actually did fight some of Sanofi's later patents and won. But more often, and I mean a lot more often, simply filing for a patent is enough to keep generic makers away.

[B]

Oh, yeah, well, sure. Like, who wants to spend money fighting a patent lawsuit when you could just, you know, manufacture some other generic drug?

[G]

And of course, this is not just insulin.

[H]

Oh, this is the standard practice. This happens with every drug.

[G]

That's Tahir Amin, one of the big global experts on drug patents. Tahir is the CEO and co founder of a nonprofit called iMac, which stands

[H]

for the Initiative for Medicines Access and Knowledge. We work on building a more just and equitable access to medicine systems.

[G]

The report that documented 74 patents on Lantus, that one insulin I used to use. Tahir's group wrote it. And Tahir says this is business as usual because it means big money, particularly

[H]

when you're talking about some of the drugs that you see in the US market, like for rheumatoid arthritis. These are worth billions of dollars.

[G]

Tahir's group did a study on the 12 best selling drugs in the US they had an average of 131 patents each. If all of those patents stick, that's an average of 38 years of patent protection.

[B]

So maybe we should update your riddle. When is a patent not a patent? When it's 131 patents.

[G]

Yeah. Activists and experts call this kind of thing patent thicketing or evergreening.

[B]

You know, I've been reading up on this too. Drug companies have their own name for this practice. They call it life cycle management.

[G]

Wow, what a term of art. And actually, bedaquiline, the TB drug, is a great example. In 2014, Tahir did what they call a patent landscape on bedaquiline, mapping all of the different patents that JJ filed around the world.

[H]

We all knew that with the advent of multiple drug resistance tb, we needed to know how we're going to get these drugs to the communities and the countries that they need them most.

[G]

He identified a long list of patents that JJ filed. And the most important was the original formula for the drug, set to expire in 2023. And the second most important patent was on something called the salt formulation for the drug.

[B]

Salt formulation.

[G]

Yep. And it's kind of worth getting into the weeds here just for a second, because this sort of thing is at the absolute heart of these drug patent games. When you develop a drug, the first step is finding a molecule that works in a test tube that does the thing you want, like kills the germ. That's going to be the first patent, that molecule. But the molecule isn't medicine.

[H]

You have to develop it formulated so that it's actually more bioavailable that it can get into the bloodstream and, and do whatever biological activity that it does. And this is classic organic chemistry stuff that is routine.

[G]

It's routine. So what he's saying here and other experts agree, by the way, identifying a salt formulation that can work as medicine isn't where the innovation is. And most importantly, it doesn't have to take a long time. But JJ didn't apply for their secondary patent on it until a full Four years after their initial patent, I have

[B]

started reading about life cycle management. You know, what the pharma industry calls all this. And what you're talking about here is literally the playbook. Like one lawyer has advice about when to file this kind of secondary patent. Here's what he says. You'll want to do this as late as possible, but before clinical trials. If Company X can hold off filing for two or three years during the drug discovery phase, it will buy more time on the back end of the patent's term.

[G]

Yeah, and JJ waited four years, so a little extra.

[B]

And we asked Johnson and Johnson, hey, did you put off filing a secondary patent on the salt formulation to stretch out your patent rights? We haven't heard back. So TB advocates kind of had their eye on July 2023, because in July 2023, the original patent that Johnson and Johnson had on Badacuin was set to expire. And the secondary patent, the sort of basic add on, was going to be the next big obstacle. So back to John Green. He's learning all this stuff about tb, including about how the secondary patent on Bedaquin is going to keep clamping down access. And he's making all these TB videos, but it's not like he has some kind of big plan

[C]

for me. You know, this is all I was thinking about. It was the first thing I thought about in the morning and the last thing I thought about before I went to sleep is how did we end up in a world where the world's deadliest infectious disease is largely ignored in the richest parts of the world?

[B]

And he was getting kind of discouraged.

[C]

I felt powerless before it. And this is one of the real lessons for me is that I felt like, well, what are we going to do? It's not like Johnson Johnson is going to like abandon the idea of secondary patents. Right?

[B]

I mean, he knew secondary patents can be worth billions of dollars.

[C]

And so they're not going to abandon these attempts to make their patents last longer than they should because they're a for profit company. And I felt really, Yeah, I just felt powerless.

[B]

And then earlier this year, something changed. It was not something that John Green or an army of nerds could have done or could have done anything about. It was done by India's patent office, responding to a legal challenge brought by two young women who had survived tuberculosis, one from India, one from South Africa. And it was based on legal work that our new pal Tahir Amin and others did in India almost 20 years ago. And it gave John Green an idea of how an army of nerd fighters could join this battle. That's next. This episode of An Arm and a Leg is produced in partnership with KFF Health News. That's a nonprofit newsroom covering healthcare in America. The journalists at KFF Health News are amazing. Their work wins all kinds of awards every year. We are honored to work with them. Emily, will you sketch out this 20 year patent fight and why India is at the center of it?

[G]

So here's something I learned. Twenty years ago in India, they didn't actually recognize any patents on medicine. In fact, that's what allowed India to build a big generic drug industry. People called it the pharmacy of the world, cranking out cheap generic drugs. But all that was about to change. The World Trade Organization was tightening the screws on intellectual property like patents. If India wanted to be part of the big global trade club, it had to agree to enforce the same patent protections as places like the US And Europe, including for drugs. It was an interesting time to be a patent lawyer. Tahir Amin was a young one at the time, living in London on partnership track at a law firm. But the work wasn't what he hoped for.

[H]

You practice law because you feel you have a legal case and you're using your brain to kind of find the right arguments and the best arguments.

[G]

But working for big corporate clients who had deep pockets meant arguments were less relevant.

[H]

Well, in this case, it wasn't really an argument. It was just that I've got more money and I'm just going to railroad you into a submission.

[G]

As a patent attorney, he wanted to be on the other side of that fight, maybe in a place like India where they were creating a new patent system for drugs. By 2004, he had a new job in Bangalore with a group called the Alternative Law Forum. One big issue was how India's new patent laws would affect people with hiv. It was the height of the epidemic in India, and those laws threatened to make antiretrovirals more expensive and out of reach for a lot of people who needed them. Tahir was outraged. Just listen to him talking to a reporter back then.

[H]

So you're telling me that actually preventing such an epidemic occurring in India is not as important as maintaining the pharmaceutical industry and giving out patents on essential medicines and drugs?

[G]

So the stakes were high, and India wasn't going to back out of its commitment to enforcing drug patents. But activists in Tahir circle managed to get an important concession written into the law. It's called section 3D. D as in don't try to double dip on a drug patent in India. Because what section 3D says is basically if you are going to try and patent a new formulation of an already existing drug, then you have to prove that it increases the drug's efficacy, makes it more effective.

[H]

The burden became much heavier on the patent holder or the applicant to show that it had better efficacy. And that was the burden bridge that a lot of the pharmaceutical companies really did not like about India's law. And they still don't like to this day.

[G]

And here's why people started using it. India passed its new patent law in 2005. The very next year, Tahir and another lawyer founded IMAC IMAK, the Initiative for medicines access and knowledge. And in their very first year of existence, IMAK successfully challenged seven patents on HIV medicines in India. In some cases, the drug companies even withdrew their patents once the challenges were filed, knowing they wouldn't hold up.

[B]

So for sure, getting Section 3D was a big victory in India 15, 20 years ago. And let's talk about how different it is from our patent deal in the US and what that means, because here, drug companies file all kinds of extra patents on existing drugs, often dozens and dozens of them, and a single patent lasts 20 years. But those extra patents can add years and years of patent protection, even decades, which allows those companies to keep their monopolies, keep prices high. Tahir Amin calls this sort of thing over patenting. Other experts call it evergreening. Pharma companies have their own term life cycle management and India's patent law, Section 3D set a limit on this sort of thing. Your new add on to your existing drug doesn't make the drug work better. Sorry, no additional patent for you. You get your 20 years, you're done. And TB advocates have been watching that 20 year clock tick down on a really important drug called Bedaquiline. There are extra patents on it that they hoped to use section 3D to challenge and they wanted TB survivors to be the faces of that patent challenge.

[G]

Someone like the TB survivor I spoke to recently on Zoom.

[I]

Okay, so my name is Pumeza Tisile

[G]

Fumesa's in Cape Town, South Africa. And our Zoom connection wasn't fabulous.

[I]

Maybe we can turn video off because I think there's a glitch.

[G]

So I'm going to relay to you a lot of what she told me.

[I]

So for me, for Fumesa first got

[G]

sick with TB in 2010 when she was 19. It took a long time for doctors to realize what she had, and once they did, she had to quit university and move into the hospital. For treatment for drug resistant tuberculosis. And the treatment was rough. There were literally thousands of pills plus lots of injections. And then one day she woke up and a nurse came by.

[I]

No, she was speaking. I know this because her lips were moving.

[G]

Fumesa could see her lips moving, but couldn't hear her voice.

[I]

It felt like a dream.

[G]

Like about half the people given this treatment, she lost her hearing for good. In some ways, she was lucky she recovered from tb. And when she did, she got involved in TB advocacy and wrote a blog for Doctors Without Borders, also known as msf. That's how she learned about a newer drug called Bedaquiline, A drug that didn't cause hearing loss, and a drug that had the potential to save millions of lives. Growing numbers of people have multidrug resistant forms of TB that can't be cured without bedequilin. And in 2019, MSF invited her to team up on a project to make

[B]

Bedaquilin more available by using Section 3D of India's Patent law. Because they knew the initial patent on Bedaklan was set to expire in 2023. And Johnson and Johnson had filed one of those extra patents, a patent that would maintain their monopoly on Padaquin for another four years.

[G]

But in India, that extra patent hadn't yet been granted.

[J]

MSF saw an opportunity to challenge it based on section 3D. MSF asked Fumesa to be the public face of that challenge, along with another TB survivor from India named Nandita Venkateshan, to make this case against the secondary patent. That case went on for years, Until March of 2023, when Fumesa's side totally won based on Section 3D, India rejected Johnson and Johnson's secondary patent on bedaquilin.

[B]

So back in the us, John Green sees the victory that Fumesa and Mandita have won and what it can mean. For one thing, there's an immediate practical

[C]

effect from that moment. That meant that Indian generic medication manufacturers, of whom there are a lot, could start to develop their own generic versions of Bedaqualene almost immediately. So that like almost immediately after this patent expired in India, there would be generic Bedacoline available in India.

[B]

And if generic Bedaquin, cheaper bedaquin could be made in India, then maybe it could be distributed in other countries. Johnson and Johnson would still somehow have to get pressured into allowing that distribution, which would not be a small thing. But the legal victory in India had just expanded John Green's idea of what advocacy could accomplish.

[C]

And I was like, that is incredible. Like, maybe it is possible, you know, seeing these two young women who didn't have the audience that I had or the power that I have or any of that succeed, I was like, okay, well, maybe working the system and being patient and, you know, fighting for incremental progress matters. And that's when I started to think, well, let's see what I can do, or let's see what we can do.

[B]

He says, what we can do. Because, of course, John Green and his brother Hank have spent more than 15 years cultivating a community of nerdfighters. So Fumes and Nandita won their case. On March of 2023. The original patent on Bedaquin in India. Now the only important patent on Bedakwan was set to expire just a few months later in July. And exactly a week before that deadline, John Green posted a video that began, as lots of his videos do, in the form of an address to his brother Hank.

[C]

Good morning, Hank. It's Tuesday.

[D]

So a week from today marks a huge moment of progress for human health as the patent on the drug Bedaquiline expires, allowing less expensive generic versions to be produced that can cure far more people living with multidrug resistant tuberculosis.

[B]

And then he does a quick double take, like someone's whispered to him from off camera, Wait, what's that?

[D]

Oh, well, that's unfortunate. What will actually happen next Tuesday is that the company Johnson and Johnson, will begin enforcing a secondary patent, thus denying access to bedaqualene to around 6 million people over the next four years.

[B]

The video is called Barely Contained Rage, an open letter to Johnson and Johnson. In it, John Green lays out how Johnson and Johnson's secondary patent on Bedaquin could keep generics off the market for four more years, keeping Bedaquin too expensive for an estimated 1.4 million people who would likely die without it.

[D]

So if it sounds like I'm angry, that's because I'm angry. But I think we can make change here. Thanks to lawsuits filed by TB survivors led by two extraordinary young women, Their there are right now generic manufacturers ready to go making Beddine.

[B]

And he urges everybody watching and that's a lot of people to start making some noise. Lots of nerdfighters did exactly that. And before the week was over, Johnson and Johnson seemed to blink. The company announced that they were striking a deal with global health agencies to make generic Bodaquin more widely available beyond India. It was a cool moment for the nerdfighters, but John Green will tell you they weren't.

[C]

The whole story the heroes of this story are not me or the people who watched that video, although I think our contribution was important. The heroes of the story are the people who worked on this for the last 10 years to make it happen.

[B]

And as John Green says, it wasn't the end of the story. For one thing, this deal excluded 11 countries, including ironically, South Africa, where Fumesa's from. All those countries have high rates of tb.

[C]

The deal is good news. It's just not the news that we need yet. And everybody who it leaves out, it's unacceptable. It's unacceptable to leave anyone out.

[B]

A few weeks after the initial deal was announced, Johnson and Johnson made a new announcement. They were cutting their own price on Bedaquin in all low and middle income countries by more than half, which meant that even more people would have access to Bodaquin, which we love.

[G]

But Tahir Amin says a deeper problem just doesn't get addressed this way. It's still Johnson and Johnson that gets to dictate virtually everything about who makes it, who distributes it and how much it should cost. That's because except for in India, all their patent rights still stand.

[H]

Yes, they're trying to make a voluntary arrangement that can help patients get TB drugs, but the key is who keeps the power and J and J keeps the power. And that's what the real issue should be about in this conversation.

[G]

Which sort of brings us to what he and his outfit, iMac, are up to now.

[H]

As an organization, we've pivoted a little bit because we, for the best part of 16 years, we did challenges country by country, drug by drug. And while we felt that it was very important because it helped tell the story and it helped notch some victories,

[G]

for the last few years they've taken a different approach. He says 80% of IMAX work is now focused here.

[B]

Yeah, this is the really interesting turn we talked about right at the top of this story. The global activists who've been fighting patent challenges around the world have focused their attention their work here in the United States. And you know, it's not because they feel bad for us because, you know, drug prices in the US are so wildly high, which they are.

[G]

Right. It's because of what policies in the US mean for people around the world. The US is the heart of the global patent regime. US drug companies shaped the World Trade Organization policies regarding drug patents, the policies that force places like India to recognize patents on drugs in the first place. And it's U.S. patent officers who train examiners around the world. How we think about and award patents here has global implications. That's why iMac is here now.

[H]

We felt was we need to educate people and policymakers, other stakeholders, other groups who are interested in these issues. Basically popularized issue.

[G]

He wants to popularize the case against over patenting, evergreening, lifecycle management, whatever you want to call stretching a 20 year patent into, say a 38 year patent.

[H]

There's an interesting economic graph that I sometimes use in my presentations. It's like the duration of a patent. The social benefit actually goes up when you get the initial sort of a certain period of protection. But once you start stretching it out, the social benefit goes down.

[G]

He says not only does overpatenting keep prices super high, it actually prevents the thing that patents are supposed to promote. Innovation, getting newer, better drugs to market faster. Because why bother making something newer and better when you have a lock on what's selling now?

[B]

Yeah, you know, there is a horrifying example of this in a recent New York Times story. Back in 2004, the drug maker Gilead knew it had discovered a promising improvement to one of its HIV drugs. Like this new version was less likely to damage patients, kidneys and bones. But Gilead decided to shelve it till the patents had run dry on the old version. It was part of what executives explicitly called a quote, patent extension strategy, unquote.

[G]

So Tahir thinks we should rethink our patent system for drugs.

[H]

I think there are other ways we can reward companies. No one's denying that people shouldn't be rewarded for whatever investment in capital they put in. But I think the returns are just way greater then we're led to believe that they're investing in them.

[B]

So of course we reached out to Johnson and Johnson to ask them their opinion of these arguments and they didn't respond. But pharmaceutical companies will often say, look, our ability to enforce our patent rights, you know, the big profits those monopolies make us, that's what gives us the resources to innovate to create new medicines.

[G]

And of course, there are a lot of reasons to be skeptical of that rhetoric. For one, lots of people will point to the fact that much of the research that goes into making new medicines is actually funded by the public.

[B]

Yeah, like including bedaquin. But look, getting into that debate would take a whole nother episode or, you know, five of them.

[G]

Totally. And encouraging that debate, popularizing the issue is why Tahir's sticking around here in the United States.

[B]

Yeah, you know, he's fighting a giant battle. The scope of these battles is something I think about a lot Making this show. The systems we're up against, and, you know, pharma is just one of them, are really big and the solutions we need are really sweeping. I brought that up with John Green, actually, and he told me about a conversation he'd had with his brother Hank.

[C]

I remember years ago, my brother was doing something stupid like he always is. He was up to some big world changing plan. And I was like, this just isn't going to work, man. It's like you're trying to move the ocean and you have a little bucket and you fill up the bucket and you walk like 100ft and then you pour it in a ditch and. And then you walk back and then you fill up the bucket again and it's the ocean, Hank. Like, we're not gonna move the ocean. And he was like, all right, well, okay, but I am gonna go ahead and fill up this bucket and walk a hundred feet and pour it in the ditch and then I'm gonna walk back to the ocean and I'm gonna do that, and that's just what I'm gonna do. And I find a lot of beauty in that. I think a lot of times we can only see how much of the ocean we've moved when we look back. And for now, we go on and we go on together.

[B]

And what we're talking about in this story is not Sisyphean. It's not random activity. It's strategic and purposeful, even if it's slow. About 20 years ago, Tahir Amin was in India joining the fight to influence that country's drug patent laws. And because he and his colleagues succeeded, those laws became the basis for Fumesa and Nandita's successful challenge, which created leverage for advocates and John Green's nerdfighters to use in actually pushing Johnson and Johnson to make generic bedaquin more widely. Since we first published this episode in 2023, a lot has happened, especially this year. In January, the Trump administration effectively shut down usaid, a leader in the worldwide fight against tuberculosis. You've probably heard about it. Staff got fired, funds got frozen, and more than 100 grants to outside organizations for TB control were reportedly canceled. An internal USAID memoir warns that stopping their TB control programs could lead to a substantial increase in global TB incidents, including drug resistant cases like 28 to 32%. It is a serious setback. And at exactly the same time these cuts got made, John Green was getting ready to publish a book he'd been working on for four years about his obsession with TB and the fight against it. And of course, Henry's story Everything Is Tuberculosis. The History and Persistence of Our Deadliest Infection came out in March and immediately hit the top of the bestseller list. It has stayed on that list ever since. In June, President Trump asked Congress to rescind about $9 billion in spending it had already approved for public media and foreign aid, including about $900 million supporting global health programs. John Green posted a Call to action urging his followers to call members of Congress and tell them why global health funding matters.

[D]

When tens of thousands of people do something insignificant together, it becomes very significant.

[B]

Congress ended up approving most of Trump's cuts, except for $400 million to fight HIV. It's impossible to say how much impact John Green and the Nerdfighters had, but I expect them and Tahir Amin and a lot of other people to keep going one bucketful at a time. I'll catch you with our next episode soon. Till then, take care of yourself. This episode of An Arm and a Leg was produced by Emily Pisacreta and me, Dan Weissman, with help from Bella Czechosi and edited by Ellen Weiss. Claire Davenport is our engagement producer. Anna Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions. Bea Bosco is our Consulting Director of Operations operations Lynn Johnson is our Operations Manager and Arm and a Leg is produced in partnership with KFF Health News. That's a national newsroom producing in depth journalism about health care in America and a core program at kff, an independent source of health policy research, polling and journalism. Zach Dyer is Senior Audio Producer at KFF Health News. He is Editorial Liaison to this show. Thanks to the Institute for Nonprofit News for serving as our fiscal sponsor, allowing us to accept tax exempt donations. You can learn more about [e-mail] finally, thanks to everybody who supports this show financially. If you haven't yet, we'd love for you to join in. The place for that is armandalegshow.com support. Thanks for pitching in if you can, and thanks for listening.