Kaiser Health News, An Arm and A Leg Podcast

This is part two of our globe-spanning story about drugs, patents, and YouTube megastar John Green. 

Quick recap: In our last episode, we learned how writer and YouTube star John Green kicked up a fight with Johnson & Johnson over a medicine called bedaquiline. And appeared to score a victory.

Here, we dig into the backstory: How everything John Green and his fans won was built on activism going back 20 years, and spanning multiple continents. 

All of it illustrates how pharma companies work the patent system to extend their legal monopolies on medicine way beyond the standard 20 years, and how that leads to high drug prices here and abroad. 

And what we can maybe do about it. 

This episode starts in 2004, when India began the process of changing its patent laws to align with global trade rules. Activists there managed to carve out exceptions to the law to prevent some of the worst patent abuses. 

Fast forward to this year, when those legal safeguards become key to unlocking new doors in the fight against TB. 

Meanwhile, the proponents of those Indian safeguards are here in the U.S., pushing for drug patent reform here. Which not only could help Americans, but also influence global standards. 

Here's a transcript of this episode. 

Send your stories and questions. Or call 724 ARM-N-LEG.

And of course we'd love for you to support this show.

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This episode  is special. When we heard that widely-beloved writer John Green was rallying his online community  around a fight over drug prices — and apparently making a difference — we were pumped. And this story took us in so many different directions:  Literally around the world, and then straight back home.

The drug in question is bedaquiline, made by Johnson & Johnson. It treats drug-resistant tuberculosis, and its price has been a huge obstacle to getting it to places it’s needed most — primarily places far away from the U.S.

But the reason this TB drug costs so much overseas is also one of the main reasons that important drugs here are so expensive — drugs like insulin, Humira and… well, just about everything:  

Legalistic patent games that pharma companies have mastered. 

So, in addition to John Green — and yes, we talked with John Green — we also talked with one of the world’s leading experts on drug-patent games, Tahir Amin.

Also, John Green is a great storyteller. So hearing him tell the story of how he became obsessed with tuberculosis is bittersweet.

And in order to make sense of any of this, we had to dig into the story of how John Green and his brother Hank became (and remain) YouTube superstars. 

For more than 16 years, they’ve been building a community of “nerdfighters” — nerds fighting to make the world a better place. It’s a profoundly sweet and fun story, and everything we’re trying to do here owes them a debt. 

Oh, finally:  This is, as you’re probably guessing by now, an epic story.  It’s gonna take two full episodes of An Arm and a Leg to tell it all.  

So, we hope you enjoy part one. There’s more coming in a few weeks.

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Hey there— our next story is gonna take a little more time to cook, but it is going to be SO worth it.

It involves John Green, author of The Fault in Our Stars — and yes, we've got an interview with him — and a global fight against multi-drug resistant tuberculosis.

... which turns out to be directly related to fights over the prices of drugs like insulin and humira in this country.

Meanwhile, let me recommend a story from ProPublica that's related to a story we did here a few months ago.

You might remember our recent episode about United HealthGroup, and how it's become a behemoth in recent years. That story started with a complaint from a doc in New York.

... who had a lot more tips than I could run down — or fit in one episode — and they weren't all just about United.

ProPublica's Cezary Podkul took the time to verify a big one: About zillions of dollars in fees that docs are paying — dollars that ultimately come out of our pockets — just to get paid.

Oh, and: If you aren't getting our First Aid Kit newsletter, this is a great time to sign up. We've started a series about how to fight with insurance that, unfortunately, a lot of us are gonna need at some point.

We'll be back in a few weeks, with John Green, TB, and the fight over drug prices.

Send your stories and questions. Or call 724 ARM-N-LEG.

And of course we’d love for you to support this show.

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For a year and a half now, the No Surprises Act has protected patients from some of the most outrageous out-of-network medical bills. But Congress left something pretty crucial out of the law — bills from ground ambulances. 

We look at just how wild ambulance bills can be, with a story about three siblings who took identical ambulance rides — from the same car wreck to the same hospital — and got completely different bills. (Thanks to Bram Sable-Smith who reported the story for the Bill of the Month, a series from NPR and KFF Health News.). 

And we find out how ambulance bills ended up being so random — a story that takes us back to the 1970’s. 

Plus, what you can do if you get hit with an out-of-network ambulance bill:

• See if you can negotiate a better deal
• See if you might qualify for financial assistance. (Here’s some detailed guidance from Jared Walker of Dollar For.)
• See if you’re protected under state law. At least ten states have passed laws protecting some patients from surprise ambulance bills. Check here to see if yours is one of them. 

Want to share your thoughts on how Congress should deal with out-of-network ambulance bills? A federal advisory committee wants to hear them. You can email them here.

Here’s a transcript of this episode. 

Send your stories and questions. Or call 724 ARM-N-LEG.

And of course we’d love for you to support this show.

Hosted on Acast. See acast.com/privacy for more information.

If you’ve been told your insurance won’t cover your meds — or that you’re gonna have to pay an arm and a leg for them — you’ve met a PBM: a pharmacy benefits manager. 

And: Experts say they play a big role in jacking up drug prices overall. 

But how, exactly? We took a deep dive.

This episode first went out in 2019. We’re bringing it back because PBMs are in the news these days: Congress is targeting them, in an effort to to be seen doing something about prescription drug prices. And PBMs’ sometimes-rival, the powerful pharmaceutical industry lobby, is flooding the airwaves with ads attacking them. 

There’s been a little news since 2019: Although Congress is still catching up, all 50 states have passed some laws pertaining to how PBMs work. We’ve got an update on that. 

Here’s a transcript of this episode. 

Send your stories and questions. Or call 724 ARM-N-LEG.

And of course we’d love for you to support this show.

Correction: A previous version of this episode misidentified the parent company of Express Scripts.

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A listener’s doctor wanted her credit card info up front — before her appointment. She wondered: Do I need to give it to them? We did too. 

After all, who wants the risk of being overcharged — and then having to fight for money back?

Experts gave us their best advice, including a couple of tricks to try, and a legal protection you may be able to rely on. 

Meanwhile, Elisabeth Rosenthal, senior contributing editor at KFF Health News, filled us in on the rapid growth of medical debt as a financial product, including specialized credit cards and financing plans pushed by hospitals and other providers.

They can come with steep interest rates, and (surprise, surprise) the terms aren’t always spelled out clearly. 

The federal Consumer Financial Protection Bureau has been issuing reports, including a handy FAQ, but hasn’t taken enforcement action in a decade.

Here’s a transcript of this episode. 

Send your stories and questions. Or call 724 ARM-N-LEG.

And of course we’d love for you to support this show.

Hosted on Acast. See acast.com/privacy for more information.