Judgments against patients in these suits can derail someone’s life but, according to experts, they don’t bring hospitals much money.

So why do hospitals do it?

Host Dan Weissmann investigates this practice with The Baltimore Banner and Scripps News and speaks to patients who’ve found themselves on the receiving end of such lawsuits.

Weissmann also speaks with Nick McLaughlin, an entrepreneur who’s making the business case for hospitals to stop trying to collect money from people who simply don’t have it.

Credits

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

[birds singing]

Dan: Hey there. Starting this episode with a field trip.

[dogs barking]

Dan (from field tape): I hear dogs. I’m in the right place.

Dan: Nick McLaughlin lives outside Kalamazoo, Michigan. The email with his address said: Long gravel driveway, blue house. He’d said he’d be outside with his dogs, enjoying a cup of coffee. This is a big lot, with a pond on one side, a lake on the other, and huge trees all around.

Nick: So yeah, when I said I was sitting out enjoying a cup of coffee, this is a pretty good spot to do it. Pretty cool bird action. We had some neat, red headed woodpeckers going this morning.

Dan: He’s lived in the area since he was in high school. His parents still live nearby. So do his in laws. He’s married to his high school sweetheart — they got married while they were still in college. That’s also when Nick started working in medical collections.

Nick: I just saw a part time job listing in the college job website for a patient financial counselor. Didn’t know what that meant. Uh, and next thing I knew I had a, uh, headset on and was talking to patients about two and three year old hospital bills that they had. And my parents about disowned me. My mom’s a nurse, uh, and my dad’s a PhD environmental scientist. And so, um, Their line was, what are you doing calling sick people asking for money?

Dan: He says they came around. After a couple of years, he quit the call center and ended up in sales for a company called AmeriCollect. As the name suggests, they’re a collection agency. Specifically, medical-bill collections. Hospitals and medical groups are their clients. Nick started as Americollect’s first sales rep in Michigan, then after a year or so, branched out.

Nick: It was Michigan, Indiana. Ohio. Pennsylvania, and then North Carolina and, then we’re just kinda all over.

Dan: You were really good at this. 

Nick: I was good at this.

Dan: Nick spent a decade at AmeriCollect. The company’s slogan was, is — and I swear this is true: “ridiculously nice.” It’s on their website — and Nick says it was part of their pitch to clients.

Nick: The pitch was, we’re going to be more effective in connecting with your people, maintaining your reputation, with them and your community, and, oh, by the way, we’re also effective at recovering the dollars that are owed to you, uh, by being ridiculously nice, was the line.

Dan: I’ve come to Nick for insights on one of the most ridiculously nasty parts of American health care: Because some hospitals and medical providers don’t just send bill collectors — nice or otherwise– after patients. Some hospitals sue their patients over unpaid bills — filing lawsuits by the hundreds, or even thousands, every year. And here’s a twist: These lawsuits don’t bring hospitals much money. So why do they do it? I’ve been interested in this question for years. And this year, I’ve had a lot of help chasing it, working with amazing journalists from two incredible news outlets. We had some ideas when we started — hypotheses, that we tested together. And those hypotheses… they were wrong. But we discovered something along the way that, well, no one else seems to have discovered yet. And for once, it’s actually not-bad news. Surprisingly hopeful. Of course we also learned things that made me super-mad… and the whole inquiry absolutely made clear some ways we can all look out for ourselves and each other. It’s a bunch. So we’re bringing it to you in a two-parter. Strap in.

With Scripps News and the Baltimore Banner, this is “An Arm and a Leg” — a show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter, and I like a 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. Before we get into big trends, numbers, all that– let’s start with just one family’s story.

Casey and Ron Gasior live in South Milwaukee. Our summer intern, Bella Czakowski, met them there in August.

Bella Czajkowski: Hi, Bella, nice to meet you. My husband, Ron.

Dan: Casey and Ron met in a bar almost 20 years ago. He was working there, and

then so was she. They were close– as friends.

Ron: A lot of people thought that we were together because we were so close.

Casey: But we never had anything to do with each other and that’s a sore subject. On his part. Because …

Bella: Because you were interested back then?

Ron: Yes. Yeah. Who knows, I mean, if we would have been together back then, it might not have lasted. She was young, I was older, but I still …I didn’t have my stuff together, you know. Whatever.

Dan: They married other people, drifted apart, and reconnected as friends years later –by which time both marriages were in trouble. Casey and Ron both got divorces, then got together, then bought this house eight months later. They got married in 2017. And then came the wave — waves– of medical issues.

Casey: His back, his knee, my heart.

Dan: Atrial fibrillation. That’s three procedures between them. And time off work to recover, less income. Another two procedures for Casey– carpal tunnel– more time away from work.

Casey: And at that time, too, I was also diagnosed with diabetes. So there was, there was a lot.

Dan: And there were lots of bills. They had insurance, but there’s always “Your portion.” It adds up. Plus Casey’s meds for diabetes and a-fib.

Casey: we would dig little bit out of our hole, and then we’d go right back down. And it to the where we we can’t even pay these

Dan: And then they started falling behind on house payments too.

Casey: There was a few nights in the garage, trying to figure out what our next step was.

Dan: In the garage, where Ron’s teenage daughter couldn’t hear.

Casey: We tried to do all of this without our daughter knowing, you know, cause

you don’t want to stress a kid out.

Dan: They decided the best of their bad options was Chapter 13 bankruptcy: Wrapping all their debts into a giant five-year payment plan. It would let them keep the house and their cars, if they were able to make the payments. It was really tough. The pandemic didn’t help. But in the spring of 2023, they were a couple months away from getting discharged, when they got a letter from a law firm– looking to collect money on a medical bill. It said…

Casey: That I needed to call them to make payment arrangements by a certain date Ron: Well, not to make arrangements. They wanted to payments. To make payments.

Casey: By a certain date. Otherwise, we’d be going to court.

Dan: The bill was three thousand dollars– for a medical procedure that happened before the bankruptcy. But the bill had come after. They say they called the lawyer, explained: Until we’re discharged from bankruptcy — which we will be soon — we’re actually not allowed to pay you. According to Casey and Ron, the lawyer was rude and said, essentially: See you in court. When they did, Casey says, the judge told the lawyer on the other side: These folks aren’t allowed to pay you anything until their bankruptcy is done. And told the Gasiors: When you’re discharged, do make arrangements to pay. So that’s one story– a lawsuit against folks who literally weren’t allowed to pay.

And every story is gonna be different, but the big picture: Lawsuits filed against people who — even without a court order — just couldn’t pay — that’s not a one-off. Lots of folks — reporters, researchers, advocates — have been documenting this phenomenon — hospitals suing patients by the hundreds or even thousands– for a long time. For instance, in Maryland, a study from 2020 found a hundred and forty thousand lawsuits that hospitals had filed against patients over a ten-year period. In New York, a series of reports looked at more than 50,000 lawsuits over just five years. 

Elisabeth Benjamin co-wrote those New York reports. She’s the vice president for health initiatives at the Community Service Society of New York. And one of the findings that shocked her was: how small the amounts were that folks were being sued for– like, compared to a hospital’s bottom line. Or even compared to an average hospital bill.

Elisabeth Benjamin: They’re suing people for pennies. right. The average lawsuit is maybe 1900 bucks. So they’re suing them for chump change, but that $1,900 is like life ruining for the patient.

Dan: Because the people getting sued tend to be people who are just getting by– if they’re even getting by. Elisabeth Benjamin found: People whose wages get garnished to pay medical debts tend to work for low-wage employers. And our colleagues at the Baltimore Banner found that in Maryland, people who get sued over medical bills tend to live in census tracts where poverty is high. Elisabeth Benjamin turned up another finding that surprised her: The hospitals filing the most lawsuits were not always the kinds of places that were hard-up for money. And lots of hospitals that were hard up for money weren’t filing any lawsuits.

Elisabeth Benjamin: In other words, there’s many hospitals that are either making it or not making it, but are not suing people. At least in New York, most hospitals are good guys. I mean, they wouldn’t dream of suing people. And then there’s like this cruddy, top 20, top 15 that are responsible for huge amounts of the lawsuits. And it doesn’t seem like the amounts they’re suing for really has any bearing on any hospitals bottom line. So then it begs the question of, well, what are they doing this for in the first place?

Dan: That’s basically the question I started with. What are they doing this for in the first place? And I just want to underline one of Elisabeth Benjamin’s findings: not all hospitals do this– file lawsuits in bulk. Most hospitals don’t. Other studies have found the same thing. So, it’s not a necessity. It’s a choice. And for the majority of hospitals, it’s a choice that seems to run counter to a pretty important fact: They’re organized as non-profit charities. They pay no taxes, and they give donors big tax write-offs. And they’re legally obligated to provide charity care: To have policies saying how they’ll write off bills for folks who can’t pay. 

I mean, even for-profit hospitals tend to have policies like that, without a legal obligation. So, suing people in bulk, … it’s an interesting choice. I wanted to talk with people who were part of the conversations where hospitals give the order: This is how we’re going to collect. And I got to talk with a couple of those people. One of them was Nick McLaughlin. Because Nick says, when a hospital sues patients– especially if they’re filing lawsuits in bulk, by the hundreds or thousands– a lot of the time, they’re not sending a staff attorney, or even picking a lawyer directly. The collection agency handles all that. But as Nick tells me: the strategy, the question of whether or not to sue, how hard to chase people– that all comes from the client, someone like the hospital’s revenue director.

Nick: We had clients at AmeriCollect where, they’d say, collect on it for six months and afterwards cancel it back.

Dan: Cancel it back. Meaning, cancel the assignment. Just don’t even bother trying to collect after six months. We’ll write it off.

Nick: And we’d say, you sure? Six months isn’t very long. And they’d say, “That’s what we want.” it’s more standard to be, two years.

Dan: What’s the recovery like in those intervening 18 months? Like how much more you get?

Nick: Not a ton.

Dan: Because — and this was the part that stuck with me the most– by the time a bill gets sent to a collection agency, it’s unlikely to actually be collected. When Nick was pitching AmeriCollect’s services, the pitch wasn’t, “We collect more than anybody else.” Because: that wasn’t a relevant pitch.

Nick: You’re normally not really gonna move the needle much from one collection agency to another. Meaning one collection agency might collect 10 percent, the next collection agency might collect 12 percent.

Dan: That’s a difference of two percent– but two percent of WHAT? Two percent of what’s already a very narrow slice of hospitals’ income.

I talked with an analyst for a consulting company called Kodiak– they run the numbers on this kind of thing. He said hospitals get about 90 percent of their money from insurance. By the time they send us bills, hospitals have already got 90 percent of their money. And then: a lot of people are able to pay their bills before getting sent to collections. Nick says maybe five or six percent of hospital bills– in dollars– get sent to collections at all. And Nick says, when you’re looking for someone to chase folks for that five or six percent, the difference between one agency and another is… not much.

Nick: One agency is collecting 10 percent of 5 percent and one agency is collecting 12 percent of 5%. We’re talking about a difference of, fractions of a fraction of a percent.

Dan: And even if ALL of the difference — the fractions of a fraction of a percent — is because you went hard after people, took them to court… it really looks like peanuts. 

This lines up with what journalists and advocates have documented in their reports: They compare the total, aggregate amounts hospitals are suing for, and compare it to the institution’s annual surplus. Or pay for top executives. The amounts their suing for– total– always look tiny in comparison. So the decision to do something like sue people in bulk, it doesn’t seem to Nick like it’s based on numbers. In fact, here’s where the mystery gets deeper. Because: You may have noticed, Nick’s been talking about Americollect in the past tense. He doesn’t work there anymore. These days he runs his own business, pitching his old clients — and any other hospital system he can get to listen — on a completely different approach: No matter how ridiculously nice your collections agents may be, he tells them, you should be sending them a lot less business. You’d be better off forgiving those debts, through charity care, before ever sending the first bill. He’s pitching tech to help hospitals do that. And he’s not telling hospitals, you should do this to be nice. He’s telling them: this is better for your bottom line. How he got there, and the pitch he makes now– 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 health care in America. They are amazing journalists, and I learn from them all. The. Time. We’ll have a little more information about KFF Health News at the end of this episode.

This part of Nick’s story starts at a family holiday gathering in 2019. And a conversation with his wife’s grandfather, who was 86 at the time.

Nick: He and grandma were on social security and not a whole lot of extra resources. Pretty much your, standard salt of the earth, awesome people that serve everybody else and don’t have a ton. But are just fine with that.

Dan: But now grandpa had a 750 dollar hospital bill. Not so fine.

Nick: He said, Hey Nick, I know you know a lot about hospital bills. That’s a lot of money for an old guy like me. Do you know if there are any options ? And I said, Well, sure, Grandpa.Have you ever, looked into financial assistance? And he looked at me and said, What’s that?

Dan: Financial assistance — also known as charity care — is when a hospital agrees to reduce your bill, or just write it off, because you don’t make enough money to pay it.

And Nick knew all about charity care because since he’d started working at Americollect, having a charity care policy had become a legal obligation for nonprofit hospitals — which is to say, the majority of American hospitals — thanks to a provision in the Affordable Care Act.

Nick’s company, AmeriCollect, had kept on top of that new law, and he says they helped hospitals make sure they were complying with it.

Nick: We put together policy templates and sample financial assistance policies and application forms

Dan: He says it was, in its way, a long-game sales strategy. If you develop a reputation among hospitals as someone who’s trustworthy and helpful and smart, then next time they need a new bill collector, they’ll keep you in mind. Anyway, when Nick’s grandpa said, “What’s financial assistance?” Nick was ready to go.

Nick: I said, let’s see if you qualify um, so I pulled up, the hospital’s website and pulled up their financial assistance policy, um, which was 16 pages long. And I thought to myself, how in the world would grandpa get an answer to the question, do I qualify for financial assistance?

Dan: Nick has looked at a lot of super-long financial-assistance forms since then, and he can rattle off the kinds of questions they ask:

Nick: What kind of cars do you drive? Your make and model. How much do you think that it’s worth? And how much do you owe on it? What is the value of your primary residence? How much are you spending each month on house payment, car payment, groceries, cell phone bill, a breakdown of a monthly budget?

Dan: In other words, a LOT. Nick says some of the detailed questions were put there in anticipation of proposed federal laws and regulations that never got adopted. So, Nick was super well versed in all this stuff. He’d helped hospitals design their charity care policies.

Nick: But I hadn’t spent a whole lot of time thinking about what it would be like from the patient’s perspective to try to navigate a hospital’s financial assistance program.

Dan: He was like, before jumping into all this, Grandpa, let’s just figure out if it’s worth it. Are you likely to qualify? And Nick knew how to get an answer: Because he knew, the way hospital charity-care policies work is: They compare your income to a multiple of the federal poverty level. At this hospital it was 250 percent. Nick learned what grandma and grandpa got from social security, compared it to that federal poverty number.

Nick: And so I was like, all right, well, hey grandpa, it looks like you’re going to qualify for financial assistance, let’s print out an application and start filling it out. It was bare because it was a beast of an application. But eventually he was approved for Medicaid and never received another hospital bill for the rest of his life.

Dan: And the 750 bucks? 

Nick: Disappeared.

Dan: It got Nick thinking about a presentation he’d seen a couple of years before. This was when a lot of hospitals were first rolling out their charity-care policies to comply with the new law. One of the national Catholic hospital chains was giving a talk about their policy.

Nick: We offer 75 percent discounts up to 400 percent of the federal poverty level. And I just kind of sat back in my chair and thought, 400 percent of the federal

poverty level.

Dan: That sounded like it might cover a lot of people. Like, how many people in this country make less than that? Maybe a lot. He looked it up later, and I did too:

4 times the federal poverty level for a single person is about 58 thousand a year. And almost 60 percent of Americans make less than that.

Nick: So the next logical step is, Okay, well, uh, People that hospitals send to collections, would you imagine that they have higher incomes or lower incomes than your average American? I think it’s fair to say that we can guess that they’re lower on the income scale than the average American.

Dan: So it would seem like most people who get sent to collections… would’ve qualified for financial assistance. And since, according to industry consultants, most BILLS that get sent to collections never get collected it also seems like: A lot of people who are getting chased by collections agents, maybe getting sued, would have qualified for charity care. Which, duh, maybe. I mean, a lot of reporters and advocates have written a lot of reports showing exactly that. To a lot of people, it looks like an outrage. But with Nick’s knowledge of hospital revenue departments, he saw it as something else: An opportunity. By spending all that effort on chasing folks who wouldn’t and couldn’t pay, hospitals were WASTING MONEY on that effort. And– again, because Nick really knows the nerdy details– he figured hospitals were also leaving other money on the table. Like from Medicaid, which would be paying for Grandpa’s hospital bills– not just for that first 750 dollar charge, but on every bill for the rest of his life. That’s money the hospital would’ve had a hard time getting from grandpa. And Nick thought: A guy could build a business helping hospitals save money over here and pick up money over there. So he quit his job at AmeriCollect to start that business. I asked him to do his pitch for me.

Nick: Uh, pitch. Are you looking for basically what we present to hospitals and stuff like that? Yeah.

Dan: He does this at conferences a few times a year. He pulled up PowerPoint, put it in Presenter View.

Nick: Love presenter view. Hey, let me just fire away. Yeah.

Dan: And we were off.

Nick: So, as the host mentioned, I spent my first 12 years in the industry in the hospital billing and collections world.

Dan: Nick skipped a few details– actually, looking over his shoulder I noticed a key one.

Dan (from field tape): this paragraph that you skipped, like, the cost of sending those bills, you’re saying, like, 2 dollars per.

Nick: Oh, yeah

Dan: Two bucks out of pocket. Even though it’s all automated, you’re spending a lot on the machines, the software, the paper– not to mention postage. And if someone’s headed to collections, you’re not just sending them one bill.

Nick: if you think about three statements and a final notice, and customer service cost for supporting all of that, it’s not insignificant.

Dan: Oh yeah: Customer service cost. That’s the call center. So that’s savings. Then there’s money you pick up. Nick proposes that hospitals basically just ask people their income up front, along with their insurance information. He’s offering them an easy web form to give patients. And he says when hospitals use that form, like ten percent of patients turn out to be eligible for Medicaid. He tells hospitals:

Nick: These are great opportunities to help them get on the Medicaid program, and help you get paid for the care that you provided.

Dan: And Nick says Medicaid isn’t the only opportunity to get paid. Lots of people with regular insurance also have deductibles and other “patient responsibilities” that can get into the thousands of dollars. Which makes a lot of people think twice about going in for care, if they can avoid it. And: Not only could a lot of those people meet the income requirements for charity care– remember, almost 60 percent could meet those requirements at some hospitals — hospitals can adopt charity-care policies that cover people who do have insurance. Which, Nick argues can be a money-making opportunity.

Nick: Um, a question I like to pose is: If a low income patient is on the fence about getting a procedure at your hospital, for example, a knee replacement, that will get you paid 15,000 by their insurance…

Dan: … then wouldn’t it be smart to offer them charity care so they don’t worry about their deductible? You’d be unlocking that 15 thousand dollars from their insurance company. Nick’s pitch sounded pretty solid to me. He’s got some clients, and a backer — a bigger company that’s investing in his work. He says people chat him up after he gives these talks… but he does hear some — not pushback, exactly. More like…

Nick: Eh, we’ll do what we need to do to be compliant, but we’ve got other things to deal with that, we’re not really going to worry about this too much.

Dan: In other words, it’s not a priority. Maybe not where the big money is. But then, lawsuits — especially lawsuits against people who can’t pay– aren’t where the big money is either. Why do these folks allow themselves to be literally party to them?

Nick: It’s really, I would say philosophically-based.

Dan: Philosophically-based. Up to the philosophy of the collection agency and the hospital revenue director. In part two of this story, we’ll hear from someone in the collections world who’s ready to argue, philosophically, that it’s OK to sue people for medical bills they just can’t pay.

Scott Purcell: If you just sued somebody who can’t pay, they’re not out any money. So you made a bad business decision. But truly Dan, what is the harm they’re experiencing?

Dan: And we’ll hear about the case of the disappearing lawsuits’

Ryan Little: So on September 18th, I said, Maryland hospitals are dot, dot, dot…

Basically not suing anyone for medical debt anymore. 

Dan: Yep!

Meanwhile, this is a GREAT time to make a donation to keep this show going. Projects like this take a TON of time and money. And right now, every dollar you give is being MATCHED by other “Arm and a Leg” listeners.

The NewsMatch program from the Institute for Nonprofit News has matched as much as they can for this year, and a few super-generous listeners have put up MORE matching funds. Go take them up on it!

There’s a link in the show notes, wherever you’re listening, or head to arm-and-a-leg-show, dot com, slash, support. (https://armandalegshow.com/support/)

Thank you so much! Your help makes a huge difference. We’ll be back in two weeks with part two. 

Till then, take care of yourself.

This episode of An Arm and a Leg was produced by me, Dan Weissmann, with help from Bella Czakowski and  Emily Pisacreta in partnership with the Scripps News, the Baltimore Banner, and the McGraw Center for Business Journalism at the Craig Newmark Graduate School of Journalism at the City University of New York.

Our work on this story is supported by the Fund for Investigative Journalism, and edited by Ellen Weiss.

Daisy Rosario is An Arm and a Leg’s consulting managing producer.

Gabrielle Healy is our managing editor for audience — she edits the First Aid Kit newsletter.

Sarah Ballema is our Operations Manager. 

Bea Bosco is our Consulting Director of Operations.

An 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.

You can learn more about KFF Health News at arm and a leg show dot com, slash KFF. (https://armandalegshow.com/about-x/partners-and-supporters/kaiserhealthnews/)

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 INN at I-N-N dot org. (https://inn.org/)

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If you haven’t yet, we’d love for you to pitch in to join us. Again, the place for that is arm and a leg show dot com, slash support.(https://armandalegshow.com/support/)

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

This episode was produced in partnership with Scripps News, The Baltimore Banner, and the McGraw Center for Business Journalism at the Craig Newmark Graduate School of Journalism at the City University of New York.

Work by “An Arm and a Leg” on this article is supported by the Fund for Investigative Journalism.

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And Haun was about $800 short.

When she couldn’t book the gigs she needed, Haun, with husband Johnston’s help, came up with a plan: to crowdfund enough money to make their own movie starring Haun, called “Ellen Needs Insurance.”

In this episode of “An Arm and a Leg,” host Dan Weissmann speaks with Haun and Johnston about their short film, how they were affected by the 2023 SAG-AFTRA strike, and their ongoing quest to stay insured.

Credits

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there. OK, here’s something I never expected to say — I’ve got a funny, kind of sweet story about health insurance. OK, maybe sweet and sour. Here it is …

As we record this, it’s November, which means it’s open enrollment for lots of people — time to get next year’s health insurance figured out, both on the Obamacare exchanges and at lots of workplaces. A year ago, Ellen Haun and her husband Dru Johnston were HUSTLING to get their health insurance set up for 2023. In the most creative possible way … by crowdfunding a creative project. They posted a video of course.

Ellen: Hi, I’m Ellen, and I need health insurance. 

Dru: And I’m Dru, and I also need health insurance.

Dan: Ellen and Dru work in Hollywood — acting and writing — and folks in that industry get their insurance through the unions. But only if they’ve racked up enough wages for union work over a 12-month period. They’d been on Ellen’s insurance through the actors’ union, SAG. But last fall, as they explained in their crowdfunding video, that union insurance wasn’t looking like a sure thing for the coming year.

Dru: Right now, Ellen is $804 short. So we’re making a short film. 

Ellen: And that short film is called “Ellen Needs Insurance.”

Dan: The video outlined their plan: to employ not just Ellen but other actors who also needed a little help getting over the finish line to qualify.

Dru: Also, which brings up the next point, are you an actor that’s close to hitting your health insurance? Then please get in touch.

Ellen: Yes, we want to cast you. We want you to have insurance.

Dru: And if we raise more money than our goal, we will use all of that only

towards casting more actors and getting them insurance. 

Ellen: We’ll add parts. We don’t care.

Dru: Yeah, this isn’t Shakespeare. This is a script we wrote. We’ll add parts.

Ellen: We can … We’ll make them up.

Dan: That was a year ago. And spoiler: They did make the film. Of course now they need insurance for 2024. And Ellen’s union spent a lot of 2023 on strike, which has narrowed down the opportunities to earn that insurance again. So… I wanted to talk with them!

[“An Arm and a Leg” theme music plays.]

This is “An Arm and a Leg” — a show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter, and I like a challenge.

So the job we’ve picked here is to take one of the most enraging, terrifying, depressing parts of American life, and bring you something entertaining, empowering and useful.

[“An Arm and a Leg” theme music ends.]

Ellen and Dru met at a wedding.

Ellen: I was friends with the bride and Drew was friends with the groom. And at the bachelorette party, Emily had been, like, talking about all the single guys that were going to be at the wedding, but she had forgot to include Dru on that list. So I was like, just, I was like, why is this guy talking to me so much? He’s probably got a girlfriend somewhere.

Dru: Turns out I didn’t. And then, uh, we ended up, uh, starting to date almost immediately after that wedding.

Dan: By then, Ellen was earning enough as an actor to qualify for health insurance, starting with an ad for Xfinity Internet and a recurring role as a law student on “How to Get Away with Murder.”

Viola Davis: Ms. Chapin, can you tell us what the Fifth Amendment is?

Ellen: The Fifth Amendment? Um, right.

It, um, assures your right to protection from self incrimination.

Viola Davis: Are you asking me?

Ellen: No, that’s my answer.

Viola Davis: And it’s a correct one.

Dan: Getting that insurance was a big professional milestone. More than 85 percent of SAG members do not book enough union work to qualify– it takes about 26 thousand dollars across a one-year period. (And, you know, of course most actors, Ellen included, pick up other work on the side, or even hold down a day job.) For most of the last few years, Ellen had no worries about making enough money to qualify for insurance. She’d been getting paid for a commercial that ran and ran, because it was so terrific. You may have seen it. Even I have seen it … and I kinda never watch TV. Ellen plays BOTH parts in it. She’s call center employee

Claire in Phoenix: This is Claire in Phoenix, can I help you? 

Dan: And she’s a woman who’s dialed in for customer support. 

Ellen as customer: Yes.

Claire in Phoenix: Great.

Ellen as customer: Correct.

Claire in Phoenix: Ma’am. This isn’t an automated computer.

Ellen as customer: Operator?

Claire in Phoenix: Ma’am? I’m here. I’m live.

Ellen as customer: Wait, you’re real?

Claire in Phoenix: Yeah! With Discover Card, you can talk to a real person.

Dan: Ellen had been getting a “holding fee” — to keep her from auditioning for commercials for competitors.

Ellen: And I kind of knew in the back of my mind that like, okay, eventually this holding fee is going to go away because this commercial isn’t running anymore.

Dan: And then last June, she got the call.

Ellen: My agent was like, Hey, they’re releasing you from the holds. Uh, you’re not getting that payment. You, um, you’re free to audition for other commercials.

And I was like, okay, but what about that health insurance?

Dan: This was in June. She needed to make another 6 thousand dollars, by the end of December, to keep her insurance.

Ellen: And I thought, okay, I’ve got half the year. Like that’s just booking like one other commercial.

Dan: But that wasn’t a sure thing. She’d done it for years and years, but she wanted to hedge her bets. She experimented with working as an extra.

Ellen: And I was getting like, pretty consistent work, but also background work does not pay very well.

Dan: $187 a day. More if there’s overtime, but still. It’s not that it’s not that much, especially if you’re trying to chip away at like a 6,000 balance.

I was like, I don’t know if I’m going to make this, um, I knew that it was definitely going to be down to the wire. So that’s when I was like, you know what, maybe we should think about making a movie about this.

Dan: Actually, this was an idea that had kind of been on Dru’s shelf for a few years. As a comedy writer for a TV talk show, Dru had gotten his insurance from the screenwriter’s union, the WGA. And then in 2018 the show got canceled. Lucky for Drew, he was married to Ellen by then, so they put him on her SAG insurance. And then after that saga had ended, he had a fun idea.

Dru: I was like, oh, you know what I should have done is I should have just made a web series called, “Dru Needs Insurance.” And then I was like, well, it’s too late. I guess that’s an idea that I’m never going to have to do. And then flash forward.

Dan: They’re in the same boat! all over again.

Except now, it’s Ellen who’s short, and nothing to fall back on. I asked if they remembered the day when they decided to try making the film. Dru was like, …

Dru: It was in the OBGYN’s office.

Dan: Yeah. They were pregnant! This was the first doctor visit.

Dru: We had gone to the ultrasound. We saw the baby. We heard the heartbeat. We were like, well, that we were having the baby. It’s coming.

Dan: Now they were gonna see the doctor, talk about next steps.

Dru: And we had about 20 minutes in that waiting room, just sitting there kind of going like, okay, our life’s gonna change.

We got to make some, some choices, or we got to, like, figure out, like, what room are we going to use? All that stuff. But also in the middle of that, we were like, oh, also our health insurance is going … is set to run out.

Dan: Actually, it was going to run out exactly one month before the baby’s due date.

Dru: And I was like, well, shit, we need that health insurance. Um, and, and that’s when Ellen said, I think I need to make a movie and we need to do that.

Dan: So they did! They banged out a script — and brought a friend’s production company on board. (The union doesn’t let you just pay yourself directly.) Which brings us to the point in the story when they made that crowdfunding video

[Bouncy music plays in the background.]

Dru: It’s a comedy about an actress named Ellen, and the things she does to get insurance.

Ellen: Things like begging my agent for a job, praying to the gods for a surprise residual check, and even background work.

Also, the movie’s just about how hard it is to navigate insurance in this country.

[Bouncy music ends.

Dan: How’d it come out? 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 health care in America. Their journalism is terrific– wins all kinds of awards every year– and I’m honored to work with them.

Dan: So, Ellen and Dru did raise the money: more than 33 thousand dollars. They actually did beat their goal. The movie is delightfully meta. It starts with Ellen-the-character in her kitchen in the middle of a conversation with her best friend …

Best Friend: Why can’t you just pay the difference?

Ellen: Oh yeah, I tried. But I called and they told me that’s not allowed.

Best Friend: I thought that was the whole thing about health insurance in this country. You have to pay for it.

Ellen: Apparently, not when you want to. If I want to keep my health insurance, I have to book another SAG job by the end of the year.

Best Friend: Couldn’t you cast yourself in something?

Ellen: Like in what, my own movie? Yeah. I mean, I’d have to get funding,

write a script, hire a production team, get a payroll company, …

Dan: So just like the real Ellen did, movie-Ellen decides to go all out to book another commercial. And if you ever thought it might be fun to take a crack at a career in acting, the audition scene — with Ellen and a casting director — that might dissuade you.

Casting director: Alright, we’ll start on action and, uh, remember, this determines whether or not you can see a doctor in the next year.

Dan: Soon, we see Ellen looking up COBRA — which you may have looked up yourself, like if you ever left a job without your next gig — and your next insurance — lined up.

COBRA pitch: Losing your health insurance?

Don’t worry. It happens all the time. Cobra is here for you. …

Dan: And if you’ve looked at it, you know: COBRA is EXPENSIVE. Like, average employer coverage for a family costs more than 20 thousand dollars a year. So that’s the price range for COBRA.

COBRA pitch: The fact that it’s named after a deadly and venomous snake is just part of the fun, and has nothing to do with the fact that it feels like death. You made less money, and now you have to pay more.

Dan: On her agent’s advice, Ellen tries background work, another case of art imitating life. And, in a scene that really highlights some of the peculiarities about how all of this works,  she debriefs with her friend, over drinks at a bar.

Best Friend: How is it?

Ellen: It’s not as bad as I thought, but it does not pay very well. You get a

lot more if you have a line.

Dan: And suddenly, another patron in the bar leans into the conversation… Bar patron: Excuse me, did you say you get more money if you have a line?

Ellen: Yeah.

Bar patron: Got it.

Dan: And another patron. Bar patron: Just one line?

Ellen: Yeah.

You get more if you have more than five lines, too.

Bar patron: Wow. Wow.

Dan:Now it’s everybody in the bar.

Bar patrons: Wow. Wow. Wow. Wow. Wow. Wow. Wow. Wow. Wow. Wow.

Dan: The bit about a pay bump is real, of course. Including the bump for more-than-five-lines. And just to expand on that for a minute here – Dru experienced the downside of that rule — ridiculously, painfully — when he did a one-shot appearance on Orange Is the New Black. It was a big meaty scene, but somehow wasn’t more than five lines.

Dru: I was a lawyer and every line was about a half of a page of just legalese

Dru as Lawyer: based on copious witness testimony, the U. S. attorney has charged you and four others

[DUCKS UNDER: with inciting the riot. They allege that you created and maintained a secret riot bunker, and there’s also evidence that directly implicates you in the kidnapping and false imprisonment of Officer Desmond Piscatella…]

Dan: But that’s how a “line” gets defined in this situation: As long as nobody interrupts you, a monologue is just one line. A role with five lines or less gets called an “under-five”

Dru: And I was like, this is an under five? I was like, okay, well, there we go. I’ll just lecture for two pages.

Dru as Lawyer: I’ve negotiated a plea deal for you. If you admit to the riot charges, they’re willing to drop everything else. This is very good.

Dan: We have still not gotten to the end of Dru’s first line in this scene Dru as Lawyer: It’ll garner you the shortest possible sentence.

Dru as Lawyer: Do you understand?

Dan: Back in the film, the Ellen character is still freaking out when she shows up for a doctor’s appointment.

Dr Receptionist: Has your insurance changed?

Ellen: No, but it might soon, so I wanted to make sure that you all would still take it.

Dr. Receptionist: Well, we take most insurances, so I’m sure we’ll be fine.

Ellen: Great. Um, I was looking on the California Insurance Exchange. Dr Receptionist: Uh, no.

Ellen: Excuse me?

Dr. Receptionist: No, we, we don’t take that.

Dan: And in the doctor’s office– in another echo of Ellen and Dru’s story– Ellen-the-character gets an ultrasound.

Ellen: Congratulations.

Dan: And she flashes back to the first scene, with her friend…

Best Friend: Couldn’t you cast yourself in something?

Ellen: Like in what? My own movie? (echos) My own movie?

Dan: And of course, that’s where she decides. She’s gonna do this. On her way out, she tells the receptionist…

Ellen: My insurance is not going to change. You can count on it. 

Dr. Receptionist: Um, okay.

Dan: When I saw the movie, I did not know that Ellen Haun had been pregnant when they made it.

Dru: We never brought it up in crowdfunding. But then when we were making the movie, we were like, let’s just use real life. Not only was it real, it felt like the easiest way to explain it.

Dan: They shot the movie over three days in December 2022. Making this film on $33,000 and change was a feat on its own. They paid 15 actors, and a crew. There was a location to rent, and equipment…

Ellen: You’ve got to pay for food to feed your cast and crew. And especially, you know, everyone is kind of working a little bit under their rate so you want to buy them good food.

Dan: You’ve heard some of the results. I won’t spoil the rest. It’s a very-enjoyable 13 minutes. We’ll have a link wherever you’re listening to this. With the movie wrapped by New Years, Ellen qualified for her insurance, so she was on it when their baby Bruce was born a few weeks early.

Ellen: We spent three weeks in the NICU and the entire time that we were in the hospital with him, we just kept saying, I’m so glad we have insurance. I’m so glad we have insurance. I’m so glad we have insurance.

Dan: Just a few weeks after Bruce was born, Dru’s union– the Writer’s Guild– went on strike. Then Ellen’s union went on strike too.

Ellen: We took Bruce to his very first picket when he was like two months old. And I’ve been going, like, about, once a week to, to picket with him. So everybody knows him at 

the Disney Picket location. He’s a little union baby.

Dru: We say the joke, he went straight from labor to labor action.

Dan: No joke, though: the SAG strike meant there was less work for actors in 2023– fewer chances to earn money and qualify for insurance. The health plan extended a grace period to keep folks from getting cut off, and a new law in California lets workers who are on strike get subsidized insurance from the state’s Obamacare exchange. Meanwhile, Ellen managed to book another commercial — only TV shows and movies were targeted by the strike, not ads — so their family is set for next year too. 

It’s a happy ending … for now. 

But this seems like an exhausting merry-go-round to stay on for the rest of your life. I asked Ellen and Dru how they felt about it.

Ellen: So something that has been nice about the strike has been talking to a bunch of our friends about how hard it’s gotten over the last several years to make a living doing this.

I was like in my late twenties when I got the SAG health insurance for the first time. I thought, like, “Great.” Like, “this is it.”

Dan: That was almost ten years ago. But somehow getting consistent work actually got harder over time. And that felt personal.

Ellen: It was like feeling, like, emotionally, like there’s something wrong with me that I am not making the amount of money that I made earlier in my career. And so, honestly, that has been a nice part of the strike has been realizing that, hey, this is happening to all of us. It’s not just happening to me. It’s really hard.

Dan: But it’s not just hard for actors and writers.

Dru: My brother works in tech. Right. And like, I think the nature of employment, across many industries has changed. And like, there isn’t really that same job security that there used to be when, like, my parents were coming up.

Dan: Dru thinks back to the time, years ago, when he first quit his day job, to write and perform full-time. It was touch and go at first. Like, week to week, it could feel precarious.

Dru: I had a kind of a down week and I was like, maybe it’s time to get a real day job like my brother. And right that week, he got laid off. He’s found another job, he’s figured it out, but it was that moment where I was like, oh, there’s no job that you can just get and be like, now I’m set with health insurance. So that’s a long answer to say, I don’t think we’re leaving the entertainment industry anytime soon.

Ellen: Yeah, we’ve kind of put all of our chips on the table.

Dan: And like Dru said: Fewer of us these days have jobs where we don’t have to worry about where our health insurance is coming from, or if it’s gonna be any good. I mean, if more of us had that kind of security, I would literally never have started making this show. There would be no reason to make it. But of course, five years in, I do not expect to run out of material.

As we publish this episode, we’ve also just put out an installment of our First Aid Kit newsletter, this one sums up and updates all our best advice about how to pick the least-crappy health insurance for you.

I’ve learned a lot in five years. And we’re able to share what we’ve learned because you’ve been supporting us. And if you can, this is the absolute best moment to pitch in, because right now, every dollar you give — up to a thousand dollars per person! — get matched. Thanks to NewsMatch from the Institute for Nonprofit News, every dollar you give us counts for double. The place to go is arm and a leg show, dot com, slash support. That’s https://armandalegshow.com/support/.

We’ll be back in three weeks with part one of a big investigative story we’ve been working on … pretty much all year. Talk about learning a ton. It’s been a wild ride. We’ve been able to do that — and we’ll be able to share the results with you– because of your support, and I am super-thankful. I’ll leave you with that address one more time: arm and a leg show dot com, slash, support. Thanks! I’ll catch you in three weeks. Till then, take care of yourself.

This episode of “An Arm and a Leg” was produced by Emily Pisacreta and me, Dan Weissman and edited by Ellen Weiss.

Daisy Rosario is our consulting managing producer. 

Adam Raymonda is our audio wizard. 

Our music is by Dave Winer and Blue Dot Sessions.

Gabrielle Healy is our managing editor for audience. She edits the First Aid Kit Newsletter.

Bea Bosco is our consulting director of operations. 

Sarah Ballema is our operations manager.

“An Arm and a Leg” is produced in partnership with KFF Health News — formerly known as Kaiser Health News. That’s a national newsroom producing in-depth journalism about healthcare in America, and a core program at KFF — an independent source of health policy research, polling, and journalism. You can learn more about KFF Health News at: https://armandalegshow.com/about-x/partners-and-supporters/kaiserhealthnews/

Zach Dyer is senior audio producer at KFF Health News. He is editorial liaison to this show.

Big 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 INN at INN.org

And now for one of my favorite parts of the gig … giving a shout out to some of the people who’ve come aboard to support this show in the last few weeks. Thanks at this time to our supporters (Dan lists donors.) Thank you so much! 

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

To keep in touch with “An Arm and a Leg,” subscribe to the newsletter. You can also follow the show on Facebook and X, formerly known as Twitter. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.

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It turns out they were.

“The care I was delivering to patients was resulting in them showing up in court, or having their wages garnished, or signing up for a payment plan that they would be paying for the better part of a decade,” said Messac.

In this episode of “An Arm and a Leg,” host Dan Weissmann speaks with Messac about his book, “Your Money or Your Life: Debt Collection in American Medicine,” and how people working in health care can try to reform these practices.

Credits

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there. A couple years ago, I got in touch with a guy who’d been posting about this show on Twitter.

Luke Messac: Hi, yeah, my name is Luke Messac.

Dan: Luke is a doctor. He’s an instructor of emergency medicine at Harvard. And he’s a Ph.D. historian.

He told me he was writing a history of something we cover a lot on this show. Medical debt.

Luke Messac: It’s a problem I couldn’t avoid and therefore couldn’t avoid writing about.

Dan: And now that book is out. It’s called Your Money or Your Life. It tells the story of how the collection of medical debt in the US became so aggressive, the real impact it has on patients and – especially important for us – a different way to do things.

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 Weissmann. I’m a reporter, and I like a challenge. So, our job on this show, it’s to take one of the most enraging, terrifying, depressing parts of American life and bring you something entertaining, empowering, and useful.

Dan: Luke Messac says his journey begins with this guy.

Paul Farmer: It’s not intellectually shallow to have hope. That’s a profound thing, you know…

Dan: That’s Paul Farmer – and YES, you may have heard me mention him recently, like when we talked about the writer John Green. Paul Farmer was a doctor who founded an amazing global health organization called Partners in Health.

He’s the subject of a book called Mountains Beyond Mountains, which focuses a lot on his work in Haiti, and which, I’m gonna say again here: When we start a book club on this show, that’s my vote for our first read.

Anyway, Luke started watching Paul Farmer’s videos as a kid. And ended up as

his student.

Luke Messac: I knew I wanted to be in medicine. I knew I wanted to be a doctor. When I first got into Harvard as a 17 year old kid, I, I think YouTube was just starting at that point. I’m going to date myself. And I saw some of his lectures and this was right around the time when Mountains Beyond Mountains came out. And I started to learn more about his work. My father was born in Haiti and I’ve always had a special affinity for the country. And, and so I, I heard about him. I really lucked out. In that one year, he was teaching a freshman seminar, uh, for 12 kids and I, ended up taking this class with him as freshmen and then kind of clung for dear life to, to work with the organization, uh, after that, because we were hooked.

Dan: Yeah, I mean, what an incredible opportunity. And, you know, I’ve only, I only know him right through his kind of public persona and mostly through reading that book, which is now like 20 years old, I think, um but you know, he seems like such an incredibly inspiring person who doesn’t accept half measures.

Luke Messac: Yeah, he, he insisted on a few things, and one of them was that the poor patient shouldn’t get care any less, uh, decent than the care that anyone else would expect, that the care that we deliver at Brigham and Women’s Hospital, where he also worked, should be the standard of care that should be delivered everywhere, including rural Haiti, including rural Rwanda. And he would call that an aspirational goal sometimes, but it’s one that he was extremely serious about and devoted. This guy did not stop working. Uh, you couldn’t keep up with him, but he also made space for students, especially younger students, people who weren’t even in their medical training yet. He made so much time for me. So much time for us. He’d always respond to our emails and text messages.

Dan: So did you, like, apply to MD PhD programs, like, at the same time, like you’re, like, finishing undergrad and you’re like, okay, uh, all right, here’s the, here’s the plan for the next 15 years. Or did, things evolve? Like, how did that work?

Luke Messac: Yeah, essentially. I mean, I’m somewhat loathe to give up a little secret, which is that the MD PhD programs in the United States are paid for by the federal government. At least that still remains the case. And so if you want to get a medical degree in the United States, most of the time you’re going to come out unless you’re independently wealthy with six figures in debt. And I’m not talking low six figures. If you want to get an MD-PhD in the United States, that is still funded by the federal government. So you’re going to graduate with 0 in debt from medical school or graduate school, and you’ll get a stipend on top of that. So it is a long road, but it is one that comes with some benefits and doesn’t leave you tremendously in the hole when you come out feeling like you can’t do anything but try to pay back that debt.

Dan: That is really, really wild. It’s really interesting that it’s, I mean, There’s something very poetic about you entering this program that allows you to, uh, emerge from it without debt, and then using that resource to build an understanding of and campaign against debt.

So, it’s fall 2019 and this is your story. This is how you arrived here. You are yourself basically debt free, and you’ve been following a path. And you note that you had been reading about, medical debt lawsuits.

Luke Messac: Yeah, I’d seen it in ProPublica, Kaiser Family Foundation, um, and in various newspapers across the country. And I had friends in training at Johns Hopkins hospitals, in Baltimore, and I saw them post pictures of their protests against their own hospitals, practice of suing patients, oftentimes their own low paid employees for medical debts they couldn’t afford to pay. Their work was really an inspiration to me to find out if this kind of thing was going on elsewhere. I thought it didn’t. I thought it was very anomalous practice. I didn’t think I’d find too much, uh, in the way of it happening in my neck of the woods, but I was, I was wrong about that.

Dan: So in the book, you tell the story that you went to the courthouse in Providence, Rhode Island, where you were working as a medical resident to look up medical debt lawsuits, And you’re still imagining this as like, well, this is some kind of outlier thing. I’m not going to find it. But you’re like, you’re just a little curious?

Luke Messac: Being a historian is a very solitary and quiet existence. And that is something that you cannot say of the emergency department, neither solitary nor quiet ever. And so I was I had a day off. I wanted to relive my days in the archive. And I wanted to answer this question, and I went to the courthouse. And I asked to be led into the court records. And so basically they let you into this back room, uh, looks like, uh, an office from office space, like the movie, uh, a lot of UV light and white walls. And a very old computer that looks like it came out of the late 1990s, early 2000s, and you pull up the database, also a very clunky looking old database, and you can type in your hospital or type in your business or type in an individual and see if they’ve ever been involved in the court system. And so I did that, I looked up, uh, my hospital system, other hospital systems in the state, and some of the lawsuits were what you’d expect.

Dan: Like medical malpractice suits. And run of the mill employment disputes. But he also saw lawsuits against the hospital’s patients. A lot of lawsuits.

Luke: And when they were filed, oftentimes they would get a response from the defendant, and these responses would show me that some of the defendants were single mothers. Some of the defendants were living on social security disability. Some of the defendants were recent immigrants who had trouble responding in English and so wrote back in their native languages, pleading for leniency. And when they asked for such, they would get some in the form of usually a payment plan. Maybe they would be asked to pay some amount every month for the next five years, six years, seven years to cover the cost of a single visit. And if they signed up for those payment plans, then they would be told that if they missed any payments, that they would be charged double digit interest rates. And if they didn’t respond, as many didn’t, then they would lose the case by default. And oftentimes have their wages garnished, have 25% of their wages taken from them every month. And so these were really punitive measures being taken against really vulnerable patients. The vast majority of lawsuits in the state were filed by the hospitals in which I worked,. And this was really disturbing to me. I always comforted my patients who worried about the cost of their care when they came in and said, oh boy, am I going to be able to afford this? Um, you know, should I have come in at all? And I always tried to comfort them and say, oh, don’t worry about it. Even if you’re uninsured, we have financial assistance. You’ll, you know, we don’t, we don’t go after people. And I was wrong. I was dead wrong about that. And that made me feel, uh, pretty awful.

Dan: In the book, you say you felt shame.

Luke Messac: Yeah, it was a mixture of anger and surprise and shame, because I always knew that our healthcare system was full of injustice, that so many people can’t afford insurance, even those who do, aren’t always able to afford their care, that the distribution of resources runs along steep gradients of inequality. But I didn’t realize that I was such a direct participant in that injustice, that the care I was delivering to patients was resulting in them showing up in court or having their wages garnished or signing up for a payment plan that they would be paying for the better part of a decade. So that was really the source of my shame.

Dan: And what did you do? Like, I know eventually you took lots of actions, but like, what did you do immediately?

Luke Messac: Yeah, I talked to my friends. I talked to some mentors. I talked to my wife, who is also in medicine, but was working elsewhere. And all of us shared the same sense of shock and anger and shame, because none of us wanted to be doing that to our patients. We all kind of shared the same sense of shock but. I didn’t know what to do at first. I didn’t know where to turn.

Dan: At first you tried Twitter, right? Or Facebook or…

Luke Messac: uh, yeah, I did. I just started using Twitter the year before I put out a couple of, you know, impotently angry tweets about it and said, someone’s got to do something about this. This shouldn’t exist. And, uh, didn’t get much of a response. You know, a few friends of mine said, right on. But, you know, it, it wasn’t, it wasn’t making much of a dent.

Dan: So he wrote an op ed. Submitted everywhere he could think of – New York Times, Wall Street Journal, Washington Post, even his hometown paper, the Providence Journal.

Luke Messac: No one was interested. No bites. And then there was a small, uh, lefty blog run by this guy, Steve Alquist, a real muckraking crusader here in Providence. And I sent it to him and he said, this is really interesting. Absolutely., I’ll run it. I didn’t know if it would make any difference whether this blog post on Uprise Rhode Island, uh, uh, you know, would, would cause any waves, but sure enough, the morning it went up, I got a call from my superiors of the hospital saying they definitely wanted to meet. So it had, it had something of its desired effect. Although, uh, I won’t recommend the approach to everybody because it, it, it did imperil my job.

Dan: Because that first meeting was not set up as a friendly chat. The message also said he could face public correction or worse, dot dot dot.

Luke Messac: So I wondered what that or worse could be.

Dan: You met with a top administrator who was like, you’re just wrong buddy, we don’t do that, that never happens, I would know.

Luke Messac: Yeah, they did tell me that they didn’t sue patients, that I was wrong. And to be honest, it raised a couple other questions in my mind, saying… Is this guy just lying to me or does he literally not know? And so when I was able to prove to the folks who I was meeting with that were indeed suing patients, in fact, some of these lawsuits were filed in the last few weeks, they quickly changed course, they severed their relationship with the debt collector who was filing the lawsuits on their behalf and dismissed the remainder of the cases. So that was a, that was a sanguine outcome from that one thing, but it did make me realize a few things. One was that, you know, I’d really only started to understand what on earth was going on and how so many patients were being sued and how it was being done in a way that, uh, most of us who were involved in delivering care and even a lot of the people who were involved in running the hospital didn’t seem to know that this was happening.

Dan: So Luke Messac, the doctor, now knew that hospitals, including his, were suing patients to collect debt. Luke Messac, the historian, wanted to figure out when this practice started and why. That’s after this…

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health care in America. Their work is terrific. Wins all kinds of awards every year. So proud to work with them.

Luke writes: “Medical debts have long spurred people to desperate acts: theft, suicide, plane hijacking,” And yes, the story of the hijacking is in the book. But, he also writes quote: “the modern era of pay-up-or-else health financing and aggressive debt collection began in earnest during the last two decades of the twentieth century, as threats to their own survival made hospitals less financially forgiving toward their patients.” Unquote. He writes about the eighties, how changes to Medicare and Medicaid left hospitals strapped for cash. And how they tried to make up the difference by charging higher prices to private insurers– which meant higher prices for the

uninsured too. And how in the nineties, private insurers started pushing back hard on how much they’d pay, and what they’d pay for. And that hit hospitals in the pocketbook hard.

Luke Messac: And really the question is when those cost pressures start, who’s going to make up the difference? And for a lot of places, it was patients. It was patients paying in the form of higher deductibles, higher copays, or for the uninsured, more aggressive debt collection measures. And so a lot of hospitals would leave debts on the books for years, even decades, until this time when they started saying, we’re done waiting for our money. Literally, we’re done waiting for our money was the line. And so they turned to third party debt collectors to whom they would either assign debts or sell debts, and those debt collectors really introduced a whole new series of tactics that involved the court system that involved, uh, wage garnishment and reporting debt to credit bureaus and placing liens on property and foreclosing on homes and sometimes even seeking the arrest of patients who didn’t show up to hearings. So this was a really brave new world of medical debt collection that we continue to live with today.

Dan: So here’s what I don’t really get, um, this comes up whenever you see stories about hospitals sue patients over debts. It’s like how little money this actually generates for hospitals. And this is evident from like your very, your accounts of the very first sales of debts that hospitals are selling you know, these very large collections of debts for tiny, tiny amounts and like, so, what’s the point?

Luke Messac: That is the persisting mystery of all of this. I think I have a few reasons why this might’ve happened. One is that it is a revenue garnering tactic, even as small as it is, it puts you a little more in the black or a little less in the red. And if you are a hospital financial administrator who’s charged with making sure that you remain as much in the black as possible or less in the red, then you’re going to take every tool in your toolkit until someone tells you not to. And without doctors and nurses and healthcare professionals really being involved in the process or aware that the process is going on, there’s really nothing to stop them. And the only people who you’re hearing from are debt collectors themselves. They are selling their wares at your door. They are at all your conferences. They are promising you that they will help your situation so

why not? I mean, your billing and collections office doesn’t want to deal with these bills. Folks who work in hospital billing offices, they’re used to dealing with insurers. They don’t mind that at all, right? This trench warfare trying to get insurers to pay up and dealing with all of their rigmarole in the reimbursement process is something in which they are well trained. But very few people want to deal with what are called self pay patients. They don’t want to be on the phone with poor folks trying to get them to pay up. And so you’re taking a headache off their hands by handing it to a third party debt collector who’s telling you that they’ll bet they’re better at it anyway. So I think a lot of

that has to do with kind of just the, the headache saved and the promised resources, however small they are from turning to this tactic. It just is too easy to do at this point.

Dan: Luke’s book profiles some of the early trailblazers in this headache saving business.

A guy named Michael Barrist founded NCO Financial Systems. A company that bought so much medical debt that they became known as the Walmart of debt collection.

A salesman for the company named Charles Piola was so good at selling the company’s services to doctors offices and hospitals that Inc magazine dubbed him the king of cold calls.

Luke writes that the company’s tactics included contacting patients up to 50 times in four or five months, and finding them at their workplaces. And these were not folks whose training started with a hippocratic oath: Do no harm. That was not their context.

Luke Messac: Their reference points are really other forms of consumer debt. When people don’t pay for their cars, their cars get impounded. When people don’t pay their credit card bills, they get double digit interest rates too. When people don’t pay for their homes, those homes get foreclosed. So when people don’t pay their medical bills, then use the tools at your disposal, including the legal system. 

There was also some concern that if hospitals were too lenient on patients, that they might be running afoul of some Medicare rules about kickbacks. Um, and this is an interesting concern, one that I saw raised in some legal papers, but it’s one that, at least for the last 20 years, the Department of Health and Human Services has tried to allay. And some hospitals have forsworn the practice. There are hundreds of hospitals out there who just do not sue patients, will not sue patients, and will tell you straight out, we don’t do it, we won’t do it. And they’re not getting sued by the federal government for kickbacks, right? So it’s not necessary. You don’t have to do it. And yet hospitals still do.

Dan: Towards the end of the book, you talk about like, how do we reform this system and that this issue of these kind of aggressive debt collection practices kind of rouse the conscience of most everyone. When individual institutions get the spotlight shown on, they generally stop doing it. But it’s not enough. Like it still leaves people with so, so many people with so much debt, with so many bills they can’t pay.

Luke Messac: Yeah. I have a lot of sympathy for people who feel like this problem is just too big. Or that they have other things that they need to do. For patients, often the patients who face this problems, you know, they’re often dealing with their own illnesses and their own debts and their own problems and to ask them to solve the problem themselves doesn’t seem a reasonable solution. But then I also have sympathy for the people who work in hospitals, the doctors, the nurses, the respiratory technicians, the janitors, the administrators, even who feel like their work is harder than ever and that they have enough trouble trying to make sure their patients get decent care and that they’re able to keep their own heads above water while doing it and not burn out and ask them to really look upon a really ugly feature of the healthcare system. And not only imbibe it and make sense of it, but do something about it. That’s asking a lot. And I’m really cognizant of the fact that we’re already asking so much of healthcare workers around the country. But I do think it’s something we need to take on. The best efforts are really the collective ones. And so I would say any possibility of joining up with other like minded folks who are already doing this work is going to be so much more fun, so much more effective.

Dan: Find your people,

Luke Messac: Amen. And then look around and see what your own place is doing your own hospital system because I regret to inform you that some of them won’t be what you hoped, but they are susceptible to pressure. They are capable of shame. And so there is a lot you can do close to home to make sure that your own institution is doing right by patients. Find out if your institution is suing patients. Look up your own hospital’s financial assistance policy and see what sort of extraordinary collection actions they will take against patients. See how patients qualify for free and discounted care and ask yourself is that as much as the hospital system could be doing given their resources. So there’s a lot you could do. Some of it involves grand systemic change, and some of it involves just making sure that where you go to work every day, where you’re training, where you’re studying is a place that you can believe in.

Dan: Luke Messac’s book is “Your Money or Your Life: Debt Collection in American Medicine.” It is out NOW from Oxford University Press. And speaking of right now: NEWSMATCH– is in effect. This is where we raise the biggest piece of our budget for next year, with your help. And the NewsMatch program matches every dollar you give us. The place to go is arm and a leg show dot com, slash, support. 

Next time on “An Arm and a Leg:” For a lot of us, November is open enrollment for next year’s health insurance.

Last year around this time, Ellen Hahn was absolutely scrambling — super creatively.

Ellen Hahn: When I was a kid, I dreamed about being an actor. I didn’t dream about having health insurance. I just kind of thought I would have it.

Dan: She decided to make a short film and cast herself in it. And she raised the money by crowdsourcing online. The title: Ellen Needs Insurance.

Now, the movie’s out, We’ll hear all about it.

And: of course this year, she needs insurance all over again. Plus her union has

been on strike since May. Whoa. We’ll find out what she’s got planned.

That’s in two weeks. Meanwhile, I am saying please do take a minute to pitch in to help us make this show. Every dollar gets matched.

The place to do that is arm and a leg show, dot com, slash support.

That’s arm and a leg show dot com, slash: support

Thank you so much. Catch you in a couple weeks, with  “Ellen Needs Insurance.” Till then, take care of yourself.

This episode of “An Arm and a Leg” was produced by Emily Pisacreta and me, Dan Weissman and edited by Ellen Weiss.

Daisy Rosario is our consulting managing producer. 

Adam Raymonda is our audio wizard. 

Our music is by Dave Winer and Blue Dot Sessions.

Gabrielle Healy is our managing editor for audience. She edits the First Aid Kit Newsletter.

Bea Bosco is our consulting director of operations. 

Sarah Ballema is our operations manager.

“An Arm and a Leg” is produced in partnership with KFF Health News — formerly known as Kaiser 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.

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And 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 INN at INN.org

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For nearly two decades, activists there have been organizing for patent reform. Host Dan Weissmann and producer Emily Pisacreta speak with one of them, drug patent expert Tahir Amin, about how legal victories in India (and some extra pressure from John Green’s online community of fans) have set the stage for generic manufacturing and lower-priced TB drugs.  

Now, those same patent-reform activists are turning their attention to the U.S. in hopes of lowering prices here and influencing global standards. 

Credits

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there — This is part two of a two-part story, and although I think it’s great on its own, I also think you’re gonna enjoy it a LOT more if you listen to the first part. I’m just saying.

Here’s where we left off last time: The writer John Green — author of the mega-seller The Fault in Our Stars and unbeknownst to a whole lot of people, an absolute LEGEND on YouTube, which will become a big part of this story before we’re done — was feeling something like despair.

About drug prices. Especially the price of a particular drug — one that’s needed to treat tuberculosis in other countries, a drug that’s literally life and death for millions of people, made by — and priced out of reach by — Johnson & Johnson.

He knew that 8 out of 9 people who need this drug don’t get it.

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

John Green: This is all I was thinking about: 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? But I felt powerless before it.

Dan: The drug was under patent protection. So Johnson & Johnson had a legal monopoly, and they could set the price. Even so, John Green knew there were people trying to find a way.

John Green: I would look at these, um, activists and I would say, this is amazing what they’re doing. This is incredible. Like, I don’t understand how they have the energy to fight these fights where the chance of winning is so, so, so slim.

Dan: But he was about to find out — thanks to a successful patent challenge in India.

That patent challenge built on 20 years of legal and political work to craft the drug patent system in India.

And NOT ONLY did that challenge open the door to unlocking cheaper prices for that TB drug John Green is obsessed with.

But the people who fought for those changes in India — have turned their attention to the United States for the past few years.

They think they’ve got a shot at helping us reform our own drug patent system. And boy, do we need their help.

You might have heard — like in our last episode: One thing that makes drugs in the U.S. so expensive is the way pharma companies here work the patent system. Extending their monopolies way past 20 years, sometimes by decades.

But you know, it’s not like these global activists are here in the U.S. on a charitable mission.

They know if we don’t get our patent act together, they’re screwed too.

Here’s the story of what they’ve won so far. How they busted John Green out of his despair, and what it could mean for us.

This is “An Arm and a Leg.” A show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter, and I like a challenge. So our job on this show is to take one of the most enraging, terrifying, depressing parts of American life and to bring you something entertaining, empowering, and useful.

And the person who has really been running down this part of the story is our producer Emily Pisacreta.

Emily: 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 U.S. and Europe — including for drugs.

It was an interesting time to be a patent lawyer. Tahir Amin, whom we met last episode, was a young one at the time, living in London — on a partnership track at a law firm.

But that wasn’t what he’d hoped for.

Tahir Amin: You know, 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.

Emily: But working for big corporate clients, with deep pockets to hire lawyers, meant arguments were … less relevant.

Tahir Amin: It wasn’t really an argument, it was just that I’ve got more money and I’m just gonna sort of, you know, railroad you into a submission.

Emily: 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. The new laws threatened to make anti-retrovirals 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.

Tahir Amin: 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.

Emily: So the stakes were high! And India wasn’t going to back out of its commitment to enforcing drug patents. But activists in Tahir’s circle managed to get an important concession written into the law. It’s called Section 3D. “D” as in standing for “Don’t try to double-dip on a drug patent in India.” ’Cuz what Section 3D says is basically this: If you’re gonna try and patent a new formulation of an already existing drug, then you have to prove it increases the drug’s efficacy — makes it more effective.

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

Emily: 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 IMAK — I-M-A-K: the Initiative for Medicines, Access and Knowledge. And in [its] very first year of existence, IMAK successfully challenged seven patents on HIV medicines in India. In some cases, drug companies even withdrew their patents once the challenges were filed, knowing they wouldn’t hold up.

Dan: 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 U.S., and what that means.

Because here, like we talked about last time, drug companies file all kinds of extra patents on existing drugs — often dozens and dozens of them. 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 kind 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, then you’re done.

And TB advocates have been watching that 20-year clock tick down on a really important drug called — you might remember from last time — 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.

Emily: Someone like the TB survivor I spoke to recently on Zoom 

Phumeza Tisile: OK, so my name is Phumeza Tisile.

Emily: Phumeza’s in Cape Town, South Africa, and our Zoom connection wasn’t fabulous.

Phumeza Tisile: Can we turn the video off because i think there’s a glitch?

Emily: So I’m going to relay what she told me. Phumeza first got 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.

Phumeza Tisile: I know she was speaking. I know this because her lips were moving.

Emily: Phumeza could see her lips moving — but couldn’t hear her voice. 

Phumeza Tisile: It felt like a dream.

Emily: Like about half the people given this treatment, she had 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 bedaquiline. And in 2019, MSF invited her to team up on a project to make bedaquiline more available

Dan: … by using Section 3D of India’s patent law! Because they knew: The initial patent on bedaquiline was set to expire in 2023. And Johnson & Johnson had filed one of those extra patents — a patent that would maintain their monopoly on bedaquiline for another four years.

Emily: But in India, that EXTRA patent hadn’t yet been granted. MSF saw an opportunity to challenge it based on Section 3D. MSF asked Phumeza to be the public face of that challenge, along with another TB survivor from India named Nandita Venkatesen, to make this case against the secondary patent.

That case went on for years — until March of this year. When Phumeza’s side totally won.

Based on Section 3D, India rejected Johnson & Johnson’s secondary patent on bedaquiline.

Dan: And in the U.S. and around the world, John Green and other TB advocates were watching closely. They saw some big opportunities beyond India. 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 health care in America. Their work is terrific — wins all kinds of awards every year — and I am so proud to work with them.

AND if this story about the effort to wipe out TB speaks to you at all, you might enjoy the latest podcast from KFF: In a new season of “Epidemic,” Dr. Céline Gounder looks at the effort to eradicate smallpox. Which a lot of people thought couldn’t be done. And which wasn’t easy.

Yogesh Parashar: Any outbreak was an emergency because if you don’t move within hours and contain it, you do not know how many contacts will be there, how much it would spread, and your work would increase exponentially.

Dan: But guess what? They did it. Céline Gounder talked to some of the people who actually made it happen, on the ground. Look for “Epidemic” Season 2, wherever you get podcasts.

So back in the U.S., John Green sees the victory that Phumeza and Nandita have won, and what it can mean. For one thing, there’s an immediate practical effect.

John Green: From that moment, that meant that Indian generic medication manufacturers, of whom there are a lot, could start to develop their, their own generic versions of bedaquiline almost immediately so that, like, almost immediately after this patent expired in India, there would be generic bedaquiline available in India.

Dan: And if generic bedaquiline — cheaper bedaquiline — can be MADE in India, then maybe it could be DISTRIBUTED in other countries. Johnson & 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.

John Green: 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, OK, well, maybe working the system and being patient and, and, and, 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.

Dan: He says, “What we can do,” because, you know, we mentioned this last time: John Green and his brother Hank have millions of YouTube subscribers. And a lot of these folks are not casual viewers.

The Green brothers have spent more than 15 years cultivating an active community. They call themselves “nerdfighters.”

So Phumeza and Nandita won their case in March of 2023. And the original patent on bedaquiline — in India, the ONLY important patent on bedaquiline — was set to expire just a few months later, in July.

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.

John Green: Good morning, Hank, it’s Tuesday. 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.

Dan: And then he does a quick double-take, like someone’s whispered to him from off-camera.

John Green: Wait, what’s that? Oh, well, that’s unfortunate.

What will actually happen next Tuesday is that the company Johnson & Johnson will begin enforcing a secondary patent, thus denying access to bedaquiline to around 6 million people over the next four years.

Dan: The video is called “Barely Contained Rage: An Open Letter to Johnson & Johnson.”

And, in it, John Green lays out how Johnson & Johnson’s secondary patent on bedaquiline could keep generics off the market for four more years.

Keeping bedaquiline too expensive for an estimated 1.4 million people who would likely die without it.

John Green: 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, there are, right now, generic manufacturers, ready to go, making bedaquiline.

Dan: 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 & Johnson seemed to blink. The company announced that they were striking a deal with global-health agencies, to make generic bedaquiline more widely available, beyond India.

It was a cool moment for the nerdfighters — but John Green will tell you, they weren’t the whole story.

John Green: 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 for the last years to make it happen.

Dan: And, as John Green says: It’s not the END of the story. For one thing, this deal excluded 11 countries — including ironically, South Africa, where Phumeza is from. All of them have high rates of TB.

John Green: The deal is good news. Um, 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.

Dan: A few weeks after the initial deal was announced, Johnson & Johnson made a new announcement: They were cutting their own price on bedaquiline in ALL low- and middle-income countries by more than half. Which meant even more people would have access to bedaquiline.

Emily: Which we love! But Tahir Amin says a deeper problem just doesn’t get addressed this way: It’s still Johnson & Johnson that gets to dictate virtually everything about bedaquiline — who makes it, who distributes it, and how much it should cost. That’s because, except in India, all their patent rights still stand.

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

Emily: Which sort of brings us to what he’s up to now.

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

Emily: … for the last few years they’ve taken a different approach: He says 80% of IMAK’s work is now focused here.

Dan: This is that really interesting turn we talked about right at the top of this episode: The global activists who have been fighting patent challenges around the world have focused their attention, their work, here in the United States. And it’s not because they feel bad for us, because drug prices in the U.S. are so wildly high, which they are.

Emily: Right. It’s because of what policies in the U.S. mean for people around the world. The U.S. is the heart of the global patent regime. U.S. drug companies shaped the World Trade Organization policies regarding drug patents — the policies that forced 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 IMAK is here now.

Tahir Amin: What we felt was we need to educate people and policymakers, other stakeholders, other groups who are interested in these issues, basically popularize the issue.

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

Tahir Amin: There’s an interesting graph that I sometimes use in my presentations. It’s like, um, you know, 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.

Emily: He says not only does over-patenting keep prices super-high, it actually prevents the thing that patents are supposed to do — 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?

Dan: Yeah. There was a horrifying example of this in a recent New York Times story. Back in 2004, the drugmaker Gilead knew it had discovered a promising improvement to one of its HIV drugs — this new version that was less likely to damage patients’ kidneys and bones. But Gilead decided to shelve it until the patents had run dry on the old version — as part of what executives explicitly called a “patent extension strategy.”

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

Tahir Amin: No one’s denying that people shouldn’t be rewarded for whatever investment and capital they put in. But I think the returns are just way greater than we are led to believe that they’re investing in them.

Dan: So, of course we reached out to Johnson & Johnson to ask them their opinion of these arguments. They didn’t respond, but pharmaceutical companies will often say our ability to enforce our patent rights — the big profits those monopolies make us — is what gives us the resources to innovate, to create new medicines.

Emily: 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.

Dan: Yeah, including bedaquiline. But look, getting into that debate would take a whole ’nother episode. Or five.

Emily: Totally. And encouraging that debate — popularizing the issue — is why Tahir’s sticking around in the United States.

Dan: Yeah — and, 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 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. He told me about a conversation he’d had with his brother Hank.

John Green: I remember years ago, my brother was doing something stupid like he always is. He was up to some, you know, big world-changing plan. And I was like, this just isn’t gonna work, man. Like, 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 a hundred feet.

And then you pour it in a ditch. 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 … OK, but I am going to go ahead and fill up this bucket and walk 100 feet and pour it in the ditch, and then I’m going to walk back to the ocean. And I’m going to do that. And that’s just what I’m going to 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.

Dan: 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 Phumeza and Nandita’s successful challenge — which created leverage for advocates [and John Green’s nerdfighters] to use in actually pushing Johnson & Johnson to make generic bedaquiline more widely available.

That fight’s not over, but guess what? The updates are not discouraging.

The pressure campaign against Johnson & Johnson happened in July 2023. As we write this, it’s September 2023, and here are three things happening this actual month:

One: The South African government launched an investigation into Johnson & Johnson for price-gouging on bedaquiline and for gaming the patent system to unfairly maintain its rights to the drug.

Two: John Green and the nerdfighters teamed up with global health agencies again to blast the internet with demands that a company called Danaher lower the price of its diagnostic tests for tuberculosis.

They were like: Make this test $5. And within a week — literally, just in time for John Green to post his next weekly video to YouTube — Danaher said, um, how about $7.97?

John Green: Which isn’t the 50% reduction we hoped for, but is extremely, extremely significant. And it’s significant in part because Danaher has committed to making no profit in poor countries from their standard TB cartridge.

Dan: And three: The Federal Trade Commission threatened to crack down on pharma companies for some abuses of patent system rules.

And you know who was there, egging them on? Tahir Amin.

Tahir Amin: This allows branded drugmakers to pocket extra revenue, often in the billions at the expense of Americans.

Dan: Again, all these updates are, as I’m writing this, just in the last month. Could be worse.

I’ll catch you in a few weeks. Till then, take care of yourself.

This episode of “An Arm and a Leg” was produced by Emily Pisacreta and me, Dan Weissmann — with help from Bella Cjazkowski — and edited by Ellen Weiss.

Daisy Rosario is our consulting managing producer. 

Adam Raymonda is our audio wizard. Our music is by Dave Winer and Blue Dot Sessions.

Gabrielle Healy is our managing editor for audience. She edits the First Aid Kit Newsletter.

Bea Bosco is our consulting director of operations. 

Sarah Ballema is our operations manager.

“An Arm and a Leg” is produced in partnership with KFF Health News — formerly known as Kaiser 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.

And yes, you did hear the name Kaiser in there, and no: KFF isn’t affiliated with the health care giant Kaiser Permanente. You can learn more about KFF Health News at armandalegshow.com/KFF.

Zach Dyer is senior audio producer at KFF Health News. He is editorial liaison to this show.

Thanks to Public Narrative — that’s a Chicago-based group that helps journalists and nonprofits tell better stories — for serving as our fiscal sponsor, allowing us to accept tax-exempt donations. You can learn more about Public Narrative at www.publicnarrative.org.

And thanks to everybody who supports this show financially.

If you haven’t yet, we’d love for you to join us. The place for that is armandalegshow.com/support. That’s armandalegshow.com/support. 

Thanks for pitching in if you can, and thanks for listening!

That’s next time, on “An Arm and a Leg.” Till then, take care of yourself.

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

To keep in touch with “An Arm and a Leg,” subscribe to the newsletter. You can also follow the show on Facebook and Twitter. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.

To hear all KFF Health News podcasts, click here.

And subscribe to “An Arm and a Leg” on Spotify, Apple Podcasts,Pocket Casts, or wherever you listen to podcasts.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Pharmaceutical giant Johnson & Johnson’s patents on a drug called bedaquiline have a lot to do with it.

In this episode of “An Arm and a Leg,” host Dan Weissmann speaks with writer and YouTube star John Green about how he mobilized his massive online community of “nerdfighters” to change the company’s policy and help make the drug more accessible.

But not every lifesaving drug has a champion with a platform as big as Green’s. Drug companies’ patents limit access to affordable treatments as well.

Weissmann also speaks with drug-patent expert Tahir Amin about how companies keep their drugs under patent for so long and the legal challenges that have been made to these policies around the world.

Credits

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there — A little while ago, I got to talk with this widely-beloved dude. 

John Green: My name is John Green, and I’m a writer and YouTuber.

Dan: 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 and 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 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 & 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.

John Green: Tell your friends about this injustice, 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, their Band Aids, their Tylenol, their Listerine.

Dan: And a lot of the people who watch John Green’s videos– the community calls themselves “nerdfighters” — made a fair amount of noise.

And a few days later, Johnson & 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.

Hank Green: And this happened in a week, John, you made a video on Tuesday, “it’s Friday right now! I’m really proud to be a part of this community I’m really proud to be your brother…”

Dan: I mean, that’s a super-fun story that we’re gonna get into: How a self-proclaimed nerd raised an internet posse to influence a global pharma giant to do something pretty decent-sounding.

We are 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 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 are 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 U.S. and 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 U.S. from our own messed-up drug patent system.

Because they’ve figured out that unless we save ourselves, they’re screwed too. That’s a LOT! And it’s gonna take us two episodes to connect all the dots. 

You ready? Here we go…

This is An Arm and a Leg. A show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter, and I like a challenge. So our job on this show is to take one of the most enraging, terrifying, depressing parts of American life, and to 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.

Then Hank posted a song about waiting for the last Harry Potter book to come out.

Hank Green: [Singing] … I’m getting kind of petrified. What would Ron do if Hermione died or if Voldemort killed Hedwig, Just for yucks? …

Dan: 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 a hundred full-time employees and a whole bunch of contractors.

And, you know, it’s impossible to sum up the thousands of videos they’ve shared.

Hank Green: Good morning, John. Today we’re gonna be making cinnamon toast two different ways.

John Green: Good morning, Hank, it’s Tuesday. So I need your help with the thing I’m working on. I need to learn some jokes, but not just any jokes.

Dan: But it’s fair to say digressive, ranty arguments are kind of a staple.

John Green: Good morning Hank, it’s Tuesday. I kind of hate Batman.

Hank Green: Good morning, John, you pretty much got Batman entirely wrong.

John Green: 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?

Hank Green: 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.

Dan: The arguing may have something to do with why they call their community nerd-fighters.

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 have hosted a kind of online telethon called the Project for Awesome.

John Green: Good morning, Hank. It’s Thursday, December 17th, 2009. Time for the Project for Awesome! Hooray! Oh! [crashing sound] Ow! Whoa! I got too excited about the awesome.

Dan: It is SUPER-interactive: People upload videos pitching their favorite charities, they vote, they give. They’ve raised more than 30 million dollars. 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.

John Green: Good morning, Hank, it’s Tuesday. So over the next five years, our families are donating six and a half million dollars to Partners in Health Sierra Leone. Also we need your help…

Dan: 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.

Here’s how he told the story to me. I’m not gonna interrupt:

John Green: On the 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 capitol because we have a case we’re really concerned about.” And I said, “Yeah, of course, I’m not going to get in the way of actual doctoring.” So … But I, you know, I didn’t think much of it at the time.

So we get to this TB hospital. And immediately upon arriving, the doctors go off to do doctor stuff. And Sarah and I are just sort of sitting there in this little nine year old boy who tells me his name is Henry, which is my son’s name, at the time, my son was nine, 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 with where the doctors are, and, uh, and the, and the kid has departed and I said, you know, “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 first got here, uh, about Henry because he does seem like that. And actually he’s the case that we’re so concerned about that we, um, needed to come here.” And he wasn’t nine. He was 16. He was just really stunted and emaciated by tuberculosis. 

And, um, even though he was feeling pretty good at the time, the doctors knew that his treatment for multidrug resistant TB was failing, and that he needed access to a new cocktail that included bedaquiline, this drug that’s been around in the U.S. since 2013, but was, 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 gonna, what’s gonna happen to that kid?” And they were like, “it’s going to be a difficult path for him um, if we can’t get, if we can’t get the new treatment cocktail to him, he has a very low chance of survival.”

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

Dan: I’m going to skip to the end of this part of the story: Henry’s OK. 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. Some of them were fun, short, nerdy explainers.

John Green: What if I told you that tuberculosis gave us the cowboy hat? 

John Green: How did TB reinvigorate women’s shoe fashions?

John Green: How did tuberculosis help New Mexico become a state? I’m so glad you asked.

Dan: But he also dug into the deeper reason he’d become obsessed with TB. Because it’s a surprisingly big deal, still.

John Green: 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 War II

Dan: We fact checked that. He’s 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 bedaquiline, produced by Johnson & Johnson. The drug that did eventually help save Henry, the kid that John Green met in Sierra Leone.

But bedaquiline 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 bedaquiline weren’t getting it.

And of course medicines stay expensive when they’re 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:

Bedaquiline was patented in 2003. Patents last twenty years. By 2023, that patent would expire.

Except, not really. Because it turns out, patents on drugs have ways of living for way more than twenty years.

That’s next.

MIDROLL: This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom that covers health care in America. KFF Health News are amazing journalists – their work wins all kinds of awards every year – and I’m honored to work with them. We’ll have a little more information about KFF at the end of this episode.

Dan: So, let’s talk about drug patents and how they work– and why they don’t just last 20 years. And this is something my colleague Emily Pisacreta has been interested in for a long time.

Emily: 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, insulin is super expensive. And insulins have became so expensive in part because of the kinds of patents on them – even though those patents are way more than twenty years old! ..

Dan: Right, so you’ve got a big interest in this question: How can a patent last more than twenty years?

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

Dan: OK, I give up. When is a patent not a patent. 

Emily: When it’s 74 patents.

Dan: Yeah, this riddle is going to need some explaining.

Emily: Right. 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 2014, right?

Dan: Uh-huh

Emily: 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’ve lasted till 2014. 74 patents could’ve lasted until 2031.

Dan: 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?

Emily: 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.

Dan: OK. Now, I notice you said, those 74 patents COULD’ve lasted until 2031?

Emily: 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.

Dan: Sure. Who wants to spend money fighting a patent lawsuit when you could just y’know, manufacture some other drug?

Emily: Right. And of course this is not just insulin.

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

Emily: That’s Tahir Amin – one of the big global experts on drug patents. Tahir the CEO and cofounder of a non-profit called I-MAK, which stands for …

Tahir Amin: The Initiative for Medicines Access and Knowledge. We work on building a more just and equitable access to medicine system.

Emily: The report that documented 74 patents on Lantus, that one insulinI used to use? Tahir’s group wrote it. And Tahir says this is business as usual, because it means big money.

Tahir Amin: Particularly 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.

Emily: Tahir’s group did a study on the 12 best-selling drugs in the U.S. They had an average of 131 patents each. If all the patents stick, that’s an average of 38 years of patent protection.

Dan: So maybe we can update your riddle: 

When is a patent not a patent? 

When it’s 131 patents.

Emily: Yeah, activists and experts call this kind of thing “patent thicketing” or “evergreening.”

Dan: I’ve been reading up on this too. Drug companies have their own name for this practice. They call it  “life-cycle management.”

Emily: 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 the different patents J&J filed around the world.

Tahir Amin: We all knew that with the advent of multiple drug resistance TB, we needed to know how we’re gonna get these drugs to the communities and the countries that need them most.

Emily: He identified a long list of patents J&J filed. And the most important being 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.

Dan: Salt formulation.

Emily: 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 gonna be the first patent, that molecule. But the molecule isn’t medicine.

Tahir Amin: You have to develop it, formulate it 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.

Emily: 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 J&J didn’t apply for their secondary patent on it until a full four years after their initial patent.

Dan: I’ve started reading about “lifecycle management,” you know, what the pharma industry calls all this. And this is literally the playbook. One lawyer has advice about when to file this kind of secondary patent, here’s what he says, quote:

“You 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.”

Emily: Yep, and J & J waited four years. A little extra.

Dan: And we asked Johnson & Johnson: Hey, did you put off filing this 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 & Johnson had on bedaquiline was set to expire. And the secondary patent, this sort of basic add on, was to become the next big obstacle.

So, back to John Green. He’s learning all this stuff about TB – including about how the secondary patent on bedaquiline is gonna keep clamping down access.

And he’s making all these TB videos, but it’s not like he has some kind of big plan:

John Green: But the, 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?

Dan: And he was getting kind of discouraged.

John Green: I felt powerless before it. And this is one of the real lessons for me is that I felt like, well, what … what are we going to do? It’s not like Johnson & Johnson is going to abandon the idea of secondary patents, right?

Dan: He knew: secondary patents can be worth billions of dollars.

John Green: 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.

Dan: And then, earlier this year, something changed. It was not something that John Green, or an army of nerds could have done, or could’ve 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 and one from South Africa.

It was based on legal work that our new pal Tahir Amin and others did in India almost twenty years ago.

And gave John Green an idea of how an army of nerdfighters could join this battle.

That’s next time, on An Arm and a Leg. Till then, take care of yourself.

This episode of An Arm and a Leg was produced by me, Dan Weissmann, and Emily Pisacreta – with help from Bella Cjazkowski, and edited by Ellen Weiss.

Daisy Rosario is our consulting managing producer. 

Adam Raymonda is our audio wizard. 

Our music is by Dave Winer and Blue Dot Sessions.

Gabrielle Healy is our managing editor for audience. She edits the First Aid Kit Newsletter.

Bea Bosco is our consulting director of operations. 

Sarah Ballema is our operations manager.

An Arm and a Leg is produced in partnership with KFF Health News–formerly known as Kaiser 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.

And yes, you did hear the name Kaiser in there, and no: KFF isn’t affiliated with the health care giant Kaiser Permanente. You can learn more about KFF Health News at armandalegshow.com/KFF.

Zach Dyer is senior audio producer at KFF Health News. He is editorial liaison to this show.

Thanks to Public Narrative — that’s a Chicago-based group that helps journalists and nonprofits tell better stories — for serving as our fiscal sponsor, allowing us to accept tax-exempt donations. You can learn more about Public Narrative at www.publicnarrative.org.

And thanks to everybody who supports this show financially.

If you haven’t yet, we’d love for you to join us. The place for that is armandalegshow.com/support. That’s armandalegshow.com/support. 

It helps us out a lot, so thanks for pitching in if you can! And thanks for listening!

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

To keep in touch with “An Arm and a Leg,” subscribe to the newsletter. You can also follow the show on Facebook and Twitter. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.

To hear all KFF Health News podcasts, click here.

And subscribe to “An Arm and a Leg” on Spotify, Apple Podcasts,Pocket Casts, or wherever you listen to podcasts.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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This story can be republished for free (details).

That law has protected patients from some of the most outrageous out-of-network medical bills since it took effect in 2022 — except when it comes to ground ambulances. Host Dan Weissmann and producer Emily Pisacreta unpack the story with Bram Sable-Smith of KFF Health News and PIRG’s Patricia Kelmar and share what to do if you get hit with an out-of-network ambulance bill.

Credits

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there —

I have been following the world of medical bills for more than four years now — which makes me still a newbie, really. And here’s one thing that’s surprised me — beyond how much there is to know, and how deep the problems go.

It’s this: Sometimes, some things do actually change for the better.

Like, when I started, one of the most outrageous problems was something called “surprise bills”:

That’s when you go someplace, like a hospital, that takes your insurance, and then, SURPRISE! You get a bill from somebody there who says they DON’T take your insurance, and they feel free to charge you ANY ridiculous amount they want, and your insurance may cover a LITTLE of it, or none of it.

I was like, “I will be making episodes about this outrage for a long time.”

Except, at the end of 2020, about two years in for me, Congress actually did something about this outrage. They passed a law called the No Surprises Act.

It said, if you went somewhere in network — someplace your insurance covers — then any bill you get from anybody there? You should be covered as if they were in network. So, they don’t take your insurance? Not your problem. They’ve gotta work something out with your insurer. And if they can’t, an arbitrator steps in.

The law went into effect at the beginning of 2022. And: Surprise! In a lot of ways, it’s working. One study shows that it’s preventing a million of these surprise bills every month. A million. Every month.

Except, of course, nothing’s perfect. There are a lot of nuances we could look into, but one thing really stands out: There’s actually a hole written into the law that you could drive an ambulance through.

We’re gonna look at how that hole got there, what it means, and what MAYBE could get done about it.

This is “An Arm and a Leg,” a show about why health care costs so freaking much and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter, and I like a 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 today we’re talking about ambulances. With help from producer Emily Pisacreta.

Emily: Wee-oo-wee-oo

Dan: Haha! Emily you have spent the last few weeks looking at this whole deal

with ambulances. Why don’t you take it away?

Emily: Here’s a story that illustrates how weird ambulance bills can be. It’s a totally wild installment of “Bill of the Month,” the series from NPR and our co-producers KFF Health News.

I talked to the KFF reporter who did the story, Bram Sable-Smith, a Midwest correspondent there.

Bram Sable-Smith: I kind of focus on issues that face consumers, people who are living their lives.

Emily: One person who was just living her life was a woman named Peggy.

Bram Sable-Smith: She’s 55 years old. She works in a fine jewelry store in the Chicago suburbs. And her two siblings, Jim and Cynthia, were coming to visit her.

Emily: So Peggy and her siblings are in the car. They’re driving out into the country, going to see some horses. They’re out on this country road, they come up to an intersection, and all of sudden, bam, the car gets hit by a truck.

Bram Sable-Smith: It spun around and slammed into an electrical box right there on the side of the highway.

Emily: They survive, but they do get pretty banged up. Someone calls 911, and ambulances arrive. And here’s where the story goes from being scary to kinda weird. Peggy and her brother and sister need to go to the hospital.

But because an ambulance is not a bus, with seats for everyone, each sibling needs their own ambulance, and: Each of those ambulances is run by a different ambulance service. They end up at the same hospital, they get billed for the exact same services.

Bram: They were all charged for a life support fee and they were all charged a mileage fee.

Emily: However …

Bram: Months later when the bills came for the three of them, they got billed

three very different amounts for the exact same services.

Emily: And the bills were all out of network, and all pretty substantial. Especially Peggy’s. Cynthia’s bill was $1,250, Jim’s $1,415, and poor Peggy? Who invited her siblings on this ill-fated drive?

Bram Sable-Smith: Peggy’s bill was for $3,606.

Emily: That’s almost three times what her sister got charged. And these are all heavy-duty bills. Higher than what research shows is the average out-of-network ambulance bill.

But the fact that they’re out of network, like not billed to their insurance? That’s not an outlier. It’s estimated that 71% of ambulance bills are out of network on commercial plans. Which means 71% of the time …

Bram Sable-Smith: … ambulances are essentially able to charge whatever they want.

Emily: Result? These random ass charges.

Dan: Hold up. So this is exactly the kind of thing the No Surprises Act was supposed to prevent: out-of-network bills from someone you didn’t pick yourself. You know, like an ambulance. And you’re saying ambulances are especially unlikely to be covered by your insurance. But they’re not governed by the No Surprises Act. 

Emily: That’s right.

Dan: OK, so why did Congress leave ambulances out of the No Surprises Act?

Emily: I mean, I had the same question. It’s like … Congress was able to juggle all the demands of the insurance lobby and health care providers including, I should mention, AIR ambulance companies

Dan: Wait, that’s helicopter rides?

Emily: Yep. Helicopters, air ambulances, that were charging tens of thousands of dollars a ride. Congress dealt with them here, but, like … not regular degular ambulances? So yeah, why not?

And the answer has to do with who actually runs ambulances in the U.S. And how they get their funding.

That story starts decades ago. You ready for this?

Dan: What, a ride in the Wayback Machine? Yeah, I mean have you met me? I was born ready for this.

Emily: OK, sea tbelts on. Once upon a time, about 60 years ago …

Patricia Kelmar: We really didn’t have an emergency transportation system for

medical care in the U.S.

Emily: That’s Patricia Kelmar. She runs health care campaigns at a consumer-advocacy organization called the Public Interest Research Group. She lobbied for the No Surprises Act. And when we talked, we got into the history of ambulances, because everything has an origin story. She says a national ambulance system started with a big federal report in 1966. And here’s what it said:

Patricia Kelmar: We were losing a lot of people who were having medical emergencies at home or out in the community and didn’t get to the hospital fast enough.

Emily: The report identified accidental injuries as the leading cause of death for Americans in the first half of their life span. It said more Americans died from motor vehicle accidents in 1965 than American troops in the Korean War.

Patricia Kelmar: So this report really opened the eyes of public health officials, and there was a movement in the early Seventies to create a national emergency transportation system.

Dan: Wait! This reminds me of a show that was on when I was a kid called Emergency! with an exclamation point.

Emily: Yeah totally!

[Emergency! theme]

[Clip from Emergency! plays]

Dispatcher: Rampart Emergency? 

Paramedic 1: Rampart, this is Squad 51.

Dan: Yeah! Kids I knew had Emergency! lunchboxes

Emily: Yeah, it was a whole cultural moment. It seems like this apparently had American audiences on the edge of their seats.

[Clip from Emergency! plays]

Dispatcher: Go ahead, 51.

Paramedic 1: Rampart, we have a male patient here, age 17. He has, uh, acute abdominal pain.

Emily: That first aired in 1972.

[Clip from Emergency! plays]

Paramedic 1: Patient’s, uh, ingested two loaves of raw dough. Ambulance has just arrived.

[Emergency! Sound]

Emily: Lawmakers had a vision to match. In 1973, Congress passed the Emergency Medical Services Systems Act, to bring high-quality emergency care to every part of the country.

Patricia Kelmar: It was developed thinking about regions so that we didn’t have too many ambulances, but we had enough ambulances to serve different populations, and the best part was there was federal funding to make this happen.

Emily: But then in the ’80s … the structure of that funding changed. Now states would get block grants, big chunks of federal health care dollars that they would decide for themselves how to use.

Patricia Kelmar: And so every community then, throughout our country, responded to this change in the funding system by … understanding that we still need ambulances, but funding it in different ways.

Emily: Which is why in some places you’d never get a bill for an ambulance. The local city or county governments owns and operates it, and a mix of funding streams, including local taxes just cover it.

And in other places, you certainly would get a bill. And it wouldn’t be from the county, but it’d be from a hospital, or a for-profit EMS company. Because they run about 40% of this landscape too, and some of those companies are even owned by private equity.

And still in other places, you get volunteer ambulance companies running bake sales or even raising money on GoFundMe.

In the case of Peggy and her siblings, just by virtue of where they got into the accident, they ended up in publicly run ambulances from three different jurisdictions, each with their own funky funding, each with their own unique pricing scheme.

Dan: Huh. So that’s where things stood with ambulances when Congress was cooking up the No Surprises Act. Coming right up: Why did that lead Congress to punt? And what might come next?

[midroll]

Dan: This episode of “An Arm and a Leg” is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health care in America. Their work is absolutely terrific; I love partnering with them. We’ll have a little more information about KFF Health News at the end of this episode.

[midroll music fades out]

Dan: OK … So, since the 1960s, we’ve got ambulance care around the country that meets certain standards — great. But how the ambulances get funded, who owns them, and how much you get billed after it drops you off, all these things depend on location — not so great.

But, you know: hospital funding, hospital bills … that’s not standard across the country, either. Why did Congress apply the No Surprises Act to hospitals, but not ambulance rides? Emily, looking at you here.

Emily: Hey, look, even experts have a tough time with that one. Here’s an economist named Loren Adler from the Brookings Institution. He researches health insurance and he watched the whole No Surprises Act take shape.

I asked him: So, no ambulances. Why’s that?

Loren Adler: So, I’m not sure I can give you a super satisfactory answer. I don’t really think there’s a great reason. Uh, I can give the sort …

Emily: You don’t have to … you certainly don’t have to defend …

Loren Adler: Yeah, um, that’s true.

Emily: Actually he did have a couple of reasons. He started with: who actually runs ambulance services most of the time.

Loren Adler: About 60% of emergency ground ambulance transport is actually billed by local governments or fire departments.

Dan: So “Big Ambulance Incorporated” didn’t steamroll Congress? 

Emily: Not according to Loren.

Loren Adler: As much as observers might think that lobbyists and sort of stakeholder industry have a lot of say over Congress, I’m not objecting to that characterization. Uh, you know, calls from local lawmakers and mayors and fire department chiefs have even more weight.

Dan: So, OK. We’re talking local public servants. Like, Leslie Knope from Parks and Rec, if she were a fire chief.

Emily: Yeah, and as Loren might say: A high ambulance bill looks like an outrage to you, but to her it looks like something else.

Loren Adler: It is effectively a source of local government revenue.

Dan: So Congress was hearing from Leslie Knope, “Are you trying to bankrupt

my little town of Pawnee?” And they were like, “OK. So, no ambulances then.”

Emily: Right. Loren also sees a much nerdier factor at play.

Dan: Hit me.

Emily: Remember, whether it’s Leslie Knope or “Big Ambulance Inc.” running them, local ambulance services are overwhelmingly out of network.

And so according to Loren, the mechanisms that make the No Surprises Act work would be hard to apply.

Loren Adler: The sort of structure of the No Surprises Act is all kind of based around this median in-network price,

Emily: Did you catch that? Median in-network price.

That is, Congress had to decide: If we’re gonna make a law where an out-of-network provider can’t just charge Whatever They Want anymore in these situations, then … what are they supposed to get paid? Congress said …

Loren: We’re gonna tell insurers you have to pay whatever your sort of average in-network price was for the service.

Emily: But with so few in-network providers, there is no reliable, average in-network price.

Dan: OK. That was super-nerdy. And I’m gonna note that even if Leslie Knope and a bunch of nerds led the charge here, Big Ambulance Inc. got the benefit too. So what now?

Emily: Well, Congress did recognize that they were leaving this giant sign up at the door that said “Welcome Surprise Ambulance Bills.” And they said, OK, we can’t figure this shit out now. But let’s have a bunch of experts get together and let’s have them write us some recommendations for later. They told the Department of Health and Human Services: Go form a committee.

And now Loren is on that committee. So is Patricia Kelmar — the consumer advocate we heard from earlier.

Patricia Kelmar: The advisory committee is called the Ground Ambulance and Patient Billing Advisory Committee. If that’s not a mouthful, I don’t know …

Emily: Yeah. Yep. 

Patricia Kelmar: But it’s, it’s probably indicative of how complicated finding solutions to surprise billing can be.

Emily: Patricia and the panel, they first met in early May, and the law says they have 180 days after that to come up with some policy recommendations for lawmakers to take under advisement. After that, it’ll be up to Congress to take action again.

Dan: And, I mean, not to be a cynic, but it took years to get the No Surprises Act passed. What if I decide not to hold my breath until Congress does something about ambulances?

Emily: You’ll be forgiven, my dude.

Dan: So, where does that leave us? Scrounging for in-the-meantime advice, right? 

Emily: Yep. Patricia has some tips.

Patricia Kelmar: The first thing we recommend is that you talk to both your insurer and the ambulance company and try to negotiate better coverage or lowering of the bill.

Emily: If you get your insurance through work, your HR department may be able to help. Let them know what happened and see whether they can get insurance to pay it off.

If that’s not an option, try to negotiate with the ambulance provider.

Patricia Kelmar: Always explain your financial situation. Try to work out something. I have. Patients who called me about their ambulance bills, and when they call and explain, sometimes they get a discount.

Emily: And finally, there might actually be state local laws in your area that pertain to balance bills, that include ambulances.

Dan: Ooh, I’ve got one more tip!

Emily: Mmmhm?

Dan: This one is from our pal Jared Walker. He runs a group called Dollar For. Their whole thing is helping people get financial assistance, or charity care. ‘Cause, you know, nonprofit hospitals are required to give price breaks to at least SOME people with low incomes.

And Jared says: Ambulance companies aren’t required to have those kinds of policies, but A LOT OF THEM DO.

He also says: You should look them up. Like, the specific policy for whatever company you are dealing with. Because these policies can have funny names … like “Compassionate Care Policy.” And if you don’t ask for them by name, the person you call may pretend they don’t know what you’re talking about. That’s what Jared says. So, Jared, if you’re listening, big thanks to you for those crucial details.

Emily: Cool cool cool. But none of these solutions work for everyone.

Peggy, the woman who got into an accident with her siblings? Her bill went to collections, and she had a hell of a time fighting back. The bill disappeared only after her story aired on national radio.

Dan: That one’s definitely not gonna work for everybody.

Emily: No. Which reminds me of another thing Patricia told me.

Patricia: For the ambulance committee, there’s a public portion. People can log in, they can listen, people can share their stories, tell us something about what they want us to do, and if they don’t get called on that time, they can just write a note, and let us know.

Dan: Wherever you’re listening to this, we’ll post information about how you can chime in.

Also, I found a list of 10 states that have surprise-billing protections for ambulances — including Illinois, Ohio, New York, Colorado. We’ll have a link to the list of all 10 states as well.

Emily, thank you so much for telling us all about ambulances.

Emily: My pleasure.

Dan: And I’ve got a request here. Something I could use everybody’s help with:

We are planning an upcoming episode about AI. ‘Cause we’re wondering: Can we train ChatGPT to make it easier to appeal stupid insurance denials?

And we’re gonna need … some raw material. Some stupid insurance denials.

If you’ve gotten one recently, and you’d like some help from a chatbot — and an actual human expert that we will recruit — can you please get in touch? Go to armandalegshow.com/contact.

Let us know the story. Please include the relevant documents. We won’t share your personal information without your OK, but if we use your story, we will want to talk with you, maybe put your voice on the show.

Are you game? Or: Do you know somebody who might be? Let’s get our new robot overlords working for us, you know, while we can.

And besides: I’m pretty sure the folks at the insurance companies are already trying to do the same. Let’s start catching up.

Again: The place to share is: armandalegshow.com/contact.. Thank you so much. This should be fun.

We’ll have another episode for you in a few weeks.

Till then, take care of yourself.

This episode of “An Arm and a Leg” was produced by Emily Pisacreta — with help from Lucy Little, Bella Cjazkowski, and me, Dan Weissmann — and edited by Ellen Weiss.

Daisy Rosario is our consulting managing producer. Adam Raymonda is our audio wizard. Our music is by Dave Winer and Blue Dot Sessions.

Gabrielle Healy is our managing editor for audience. She edits the First Aid Kit Newsletter.

Bea Bosco is our consulting director of operations. Sarah Ballema is our operations manager.

“An Arm and a Leg” is produced in partnership with KFF Health News — formerly known as Kaiser 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.

And yes, you did hear the name Kaiser in there, and no: KFF isn’t affiliated with the health care giant Kaiser Permanente. You can learn more about KFF Health News at armandalegshow.com/KFF.

Zach Dyer is senior audio producer at KFF Health News. He is editorial liaison to this show.

Thanks to Public Narrative — that’s a Chicago-based group that helps journalists and nonprofits tell better stories — for serving as our fiscal sponsor, allowing us to accept tax-exempt donations. You can learn more about Public Narrative at www.publicnarrative.org.

And thanks to everybody who supports this show financially.

If you haven’t yet, we’d love for you to join us. The place for that is armandalegshow.com/support.

Thank you!

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

To keep in touch with “An Arm and a Leg,” subscribe to the newsletter. You can also follow the show on Facebook and Twitter. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.

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KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Experts say they play a big role in raising prescription drug prices.

So, what is being done to regulate PBMs?

In this episode of “An Arm and a Leg,” host Dan Weissmann explores how PBMs work and looks into government efforts to check their power. Since this episode originally aired in 2019, widespread legislation to regulate PBMs has been introduced at the state level. Weissmann gives an update.

Credits

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there —

You may have seen ads recently about access to drugs. Here’s one that starts with a woman trying to fill a prescription, but the pharmacist says…

[Clip from an ad plays]

Pharmacist: I’m sorry, this medicine isn’t covered by your insurance. 

PBM: Yeah…