“An Arm and a Leg” is collecting stories from listeners about what they’ve done to get the drugs they need when facing sticker shock. 

If you’ve ever faced difficult choices in order to afford your medicine, “An Arm and a Leg” would love to hear about it. If you’re interested in contributing, you can learn more and submit your stories using this form.

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– 

So, first: Whoa. There is a LOT going on. I’m recording this on January 30th. I’m not gonna try to summarize what the Trump administration has been doing so far on health care — because by the time you hear this, I have no idea what else might have happened. 

Oh boy. We will definitely have a lot to talk about as this year goes on. And in the meantime, all the things we’ve been talking on this show … they are still happening. 

So, we’ve got a project cooking, and I need your help with it. It’s about how freaking much we pay for medicine. And what we can maybe do about it. 

This problem is something that hits a lot of us. A big recent survey asked: Have you skipped a medication in the last year because of cost? A quarter of people answered yes. 

And we know that a ton of people spend all kinds of time and energy trying to make sure they don’t have to go without meds that cost more than they can afford, or go broke paying for them. 

Looking for coupons, haggling endlessly with insurance, ordering drugs from online pharmacies — even pharmacies in other countries. And in some cases, undertaking all kinds of epic adventures. 

One of the very first episodes of this show was about Laura Derrick, of Austin Texas. And how she turned her life upside down in 2011. She had just started a new drug. 

A drug that may have saved her life. And then, almost immediately, two things happened. Thing one: Laura found out what that drug cost. 

Laura Derrick: I was covered by insurance. So this is not what I paid, but the first bill was over $55,000. 

Dan (talking to Laura): And this is for like a month supply

Laura: A month’s supply.

Dan (talking to Laura): And how much was your share of that?

Laura: Um, my share was about $20. 

Dan: And then, thing two: her husband was diagnosed with cancer. Late-stage cancer. He needed intensive treatment, which meant he couldn’t work. Which meant, he was about to lose his insurance. 

And this was before the Affordable Care Act was implemented. If you had a pre-existing condition, and you didn’t get insurance from your job, you basically couldn’t buy insurance. 

So Laura Derrick needed a job. She knew people who were eager to hire her, but there was a catch. 

Laura: My, my daughter’s last year of high school, my son’s last year of college. I left our family with my husband in cancer treatment because the only job they could offer was in Ohio. 

And it offered us an insurance policy with a zero deductible that cost $20 a month for the whole family and covered everything we needed. But it meant I had to be gone for almost a year and a half. 

Dan: That job, by the way, was with Barack Obama’s 2012 re-election campaign. Laura was determined to win — so the ACA could get implemented, so that people, including her — and her family, could get insurance without going quite as far as she did. 

But to say the least, having insurance does not mean having no problems. For some people, getting their meds — it may not mean taking a job far away from family — but fighting with insurance can become a very frustrating part-time job of its own. 

When I talked with Lillian Karabaic, in 2022, she was grinding away: trying to avoid a crushing bill for Enbrel. That’s an expensive rheumatoid arthritis drug she’d been taking for years. 

Lillian is a financial journalist, who teaches financial self-help to millennials. So, as you can imagine, she’s very organized. 

And as we talked about the adventure she was on at that point, she pulled up the time-tracking software she uses:

Lillian Karabaic: Okay, so it has been nine hours and 32 minutes in the past two weeks that I have spent on healthcare admin, which is mostly being on phone calls. 

Dan: What kicked off all those phone calls had been a rude awakening. Literally. From her phone. 

Lillian: I just got all of a sudden a text message from my specialty pharmacy saying that I have a $3,000 co-pay. That’s not a text message that anybody wants to wake up to. 

Dan: When we talked — two weeks and almost ten hours of phone calls after that text message — Lillian was … giving up on getting out of that three-thousand dollar copay. And getting to work on figuring out how to pay it. 

Lillian: But I’m kind of delaying the inevitable at least long enough to apply for a credit card that has a decent point signup bonus. So at least I can get something out of this entire situation. 

Dan: So, yes: We know how tough this can be. Has been. Is. 

I have a feeling you may know a bit about this too. Like, you may not have gotten a text message saying you owe three thousand bucks. 

But you definitely may have been in the situation of asking, “Holy crap, I’m supposed to pay THIS MUCH for my meds? What?” 

— and THIS MUCH could be thousands of dollars, or hundreds of dollars, or 60 dollars. If it’s a lot to you, it’s a lot. And that’s why I want your help: 

If you’ve been in that situation, what have you done? And what did you learn? Maybe you learned a strategy that actually worked for you. Maybe it was, “Man, I learned about a new way I’m getting screwed.” 

However things went — however they’re going: What did you learn that you want other people to know? It doesn’t have to be a big secret. Just something you’d tell a friend about if they asked. 

But I’m pretty sure there are strategies not enough people know enough about. I’m also pretty sure there are new ways we’re getting beat up.

And the more we learn about those, the more we can work together to do something about them. So I’m asking you to share all that with me. 

By the way, I know that you may not be doing this for yourself, for your own meds. You may be doing this for a family member, or maybe you’re a health care worker trying to help a patient — or patients. Or an advocate or a social worker. 

You’ve been working on this? You’ve been learning something the rest of us should know about? I wanna hear about it. I’d love it if you head over to https://armandalegshow.com/drugs/ — and tell me about it. You can keep it brief, or go long. 

That’s https://armandalegshow.com/drugs/. We’ll have a link wherever you’re finding this, and you can just click that. 

And if you HAVEN’T been on an adventure like this- – well, one: Good. I actually would love to hear about that too. I do not mind hearing good news about good people. Not everything has to be a nightmare. 

And I would love it if you passed this request around. Because probably, somebody you know has a story we should hear about. 

Please encourage them to bring that story right here. A story with a lesson or a question. Like, “Can they freaking DO that?!? Is there anything I can do about it? Is there anything SOMEBODY can do about that?” 

Over the next month or two, we’ll dig into everything you bring us. We may call you for more details. And we’ll call some experts to get answers to some of your questions. 

Then, this spring, we’ll start sharing what we learn. The place to bring it is https://armandalegshow.com/drugs/. 

We’ll have a link wherever you’re listening. Along with a link to some resources you might find helpful. Thank you SO much! 

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

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.

An Arm and a Leg February 3, 2025 Season 13, Episode 2 p.5 

An Arm and a Leg is produced by me, Dan Weissmann, with help from Emily Pisacreta and Claire Davenport — and edited by Ellen Weiss. 

Adam Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions. Bea Bosco is our consulting director of operations. Lynne Johnson is our operations manager. 

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America — and a core program at KFF: an independent source of health policy research, polling, and journalism. 

Zach Dyer is senior audio producer at KFF Health News. He’s the editorial liaison to this show. We are distributed by KUOW, Seattle’s NPR News Station. 

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor.They allow us to accept tax-exempt donations. You can learn more about INN at INN.org. 

Finally, thank you to everybody who supports this show financially. You can join in any time at armandalegshow.com/support/. 

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 its newsletters. You can also follow the show on Facebook and the social platform X. 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.

USE OUR CONTENT

This story can be republished for free (details).

The “Shkreli Awards” are a kind of Oscars for the most outrageous examples of greed, fraud, and general brokenness in American health care.

The awards are named after Martin Shkreli, a former pharmaceutical executive who infamously raised the price of Daraprim, a lifesaving treatment for toxoplasmosis, from around $13 a pill to $750. The media dubbed him “the pharma bro,” and he became a symbol of brazen pharmaceutical greed.

In this episode of “An Arm and a Leg,” you’ll hear highlights from this year’s ceremony and reflections from the Lown Institute’s president, Vikas Saini.

“Showing all these stories together paints a picture of a health care system in desperate need of transformation,” Saini said at the event. “Not just because the stories are shocking, but because often what they’re depicting, like Martin Shkreli’s infamous price hike, is perfectly legal.”

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. So, awards season has already started …

Nikki Glaser, Golden Globes host: Good evening! And welcome to the 82nd Golden Globes, Ozempic’s biggest night.

Dan: OK, I did not watch the Golden Globes this year. But there is an awards show that’s made basically just for nerds like me. 

Vikas Saini (awards ceremony): Hello, everyone, and welcome to the eighth annual Shkreli Awards. 

Dan: The Shkreli Awards! Named after the “pharma bro” Martin Shkreli. Remember him? 

He became famous — infamous — in 2015, when a company he ran took over the making of an old drug called Daraprim. Old, old. Introduced in 1952, but it later became used to prevent a form of pneumonia that people with HIV can develop. 

So Martin Shkreli jacked up the price — from thirteen-and-a-half dollars a pill to seven hundred and fifty bucks. Rings a bell, right? So, who gives out awards named after that guy? 

Answer: A health care think tank called the Lown Institute. One of their big recent projects was ranking nonprofit hospitals by how much they do to “earn” their tax exemptions, for instance, by giving out charity care. The institute’s president, Dr. Vikas Saini, hosts the awards ceremony.

Vikas Saini (awards ceremony): So if this is your first time at the Shkreli Awards, this is our top 10 list of the most egregious examples of profiteering or dysfunction in health care.

Dan: I’m telling you: this is an awards show for nerds just like me. In fact, it’s also kind of a celebration of nerds kind of like me. Each of the awful stories these awards highlight was dug up and brought to light by … journalists. 

Vikas Saini (awards ceremony): So this year, the journalists behind these stories will be receiving a Shkreli Reporting Award. And I have one in my hand here.

Dan: It’s a bobble head: White guy in a black suit — Clark Kent without the glasses – and it’s in a display box that says 2024 Shkreli Award. Someday, I hope the reporting we do here earns us one of these. The ceremony was held January 7. We’ll bring you some highlights — I mean, is it a highlight when you’re giving awards for the worst things? Well, let’s just say they were some of the most entertaining stories. 

And we’ve got some reflections from a conversation I had with Dr. Saini the next day. The ceremony itself wasn’t fancy — just a Zoom presentation — but we’re gonna dress it up a little bit, so it sounds like other awards shows, with a big crowd, and a stage … 

Vikas Saini (awards ceremony): All right, so. Without further ado, let’s do the countdown. The 2024 Shkreli Awards. Brace yourselves. Here we go. 

Dan: 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 chosen 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.

The Shkreli Awards show is a countdown, starting with number ten. And they started with a doozy this year.

Vikas Saini (awards ceremony):Number ten. Texas Medical School allegedly neglects to notify next of kin before selling body parts of the deceased. 

Dan: NBC News reported that the University of North Texas Health Science Center in Forth Worth was getting unclaimed bodies from the county coroner, and then cutting them up and selling them — without getting anybody’s consent.

Vikas Saini (awards ceremony): The center’s business supplied the body parts to major for-profit ventures like Medtronic and Johnson Johnson. The investigation found repeated failures at the center and at the county level to contact family members who were, in fact, relatively easy to identify and reach. 

Dan: For instance, NBC talked with the family of Carl Honey, a veteran who died homeless, but was entitled to a military burial. Here’s what happened instead.

Vikas Saini (awards ceremony): Swedish medical device maker paid 341 dollars for Honey’s right leg. A Pittsburgh medical education company spent 900 dollars for his torso, and the U.S. Army paid 210 dollars for bones from his skull. It just sounds so macabre. It’s more like a Halloween story.

Dan: When NBC News told the university what they’d found — and that they’d be publishing their findings — the medical school shut down the program and fired the people who had been running it. 

But as Vikas Saini reflected when we talked, this probably wasn’t a story about a few rogue administrators. It sounded to him more like a really grisly example of how health care institutions get run. 

Vikas Saini: They set a tone at the top, that’s, we got to make our numbers. We got to make our bottom line. You know, it’s like the widget factory and, you know, how many cars did Tesla ship, and with that mentality, you set the tone.

Once you set the tone, you can’t keep track of what everybody’s doing. And the people probably thought they were doing the right thing. They’re trying to bring in some revenue.

Dan: If your job is to bring in revenue, help make the numbers, then why would you bother trying to contact next of kin and get consent before selling off somebody’s body parts? 

And this was a state medical school. As we’ll see, as you know, this theme — gotta make our numbers — runs through the whole awards ceremony and through so much of health care. 

Next on the list was another banger. 

Vikas Saini (awards ceremony): Number nine, out of the mouths of babes, a taste for tongue-tie cutting intensifies. 

Dan: I’d never heard of this, but: In some infants the little bit of tissue that connects the tongue to the floor of the mouth is a little thicker, or shorter, and that’s called a tongue tie. The New York Times reported that lactation consultants have sometimes advised new moms to have tongue-tied babies snipped, to help with nursing. 

And the Times reported that the procedure has exploded in popularity. 

Vikas Saini (awards ceremony): Despite a lack of evidence showing effectiveness, baby tongue tie cutting procedures are being touted as a cure for everything from breastfeeding difficulties to sleep apnea, scoliosis, and even constipation. 

Dan: New York Times reporters talked to one doc who said he does this procedure a hundred times a week. At 900 dollars a pop. 

Dentists also do a lot of these, and a medical-device maker named Biolase apparently was encouraging them to do more. Here’s Dr. Saini from the awards ceremony again.

Vikas Saini (awards ceremony): At an April 2024 event for pediatric dentists billed as tequila and tongue ties, representatives for the laser device company trained attendees on the procedure before doing rounds of tequila shots and margaritas. 

I should add that, you know, they had a third annual Phrenectomy Fiesta, which was advertised as “nacho average dental meeting.”

Dan: Later, Vikas Saini told me this story actually stirred some deep reflection, that goes back to the Lown Institute’s origin story, and his own. 

The institute started as the Lown Cardiovascular Research Foundation, founded in 1973 by Dr. Bernard Lown, a cardiologist who advocated for non-invasive management of heart disease — and who became Saini’s mentor. 

Vikas Saini: Dr. Lown’s motto was we do as much as possible for the patient and as little as possible to the patient.

Dan: Saini appreciates how doctors and researchers want to discover new things. But in our system, that desire gets wrapped up in the medical industry’s need to make the numbers — find new products to sell — like procedures. 

Vikas Saini: These procedures take off, especially if there’s a need or a plausible facsimile of a need in this case. And once they take off, you know, it sort of snowballs.

Dan: Tongue-tie cutting looks to him like an especially wild version of the product-development side of things. And an event like tequila and tongue ties just strikes him as a natural extension. 

Vikas Saini: This idea that the manufacturers train people in the technique, that’s not confined to this. This goes on all over the place.

Dan: We could dig up probably a trove of tongue ties and tequila shots-like events.

Vikas Saini: Yeah, yeah, yeah. Gallbladders and gimlets. 

Dan: Here’s another example of a product in search of a market. This story was dug up by Arthur Allen, a reporter with our pals at KFF Health News. And in this case, the product is a drug. 

Vikas Saini (awards ceremony): A drug company pursues high dose of profits despite risk to patients. That’s shocking. Amgen’s lung cancer drug, Lumakras … How do they make these names? Lumakras? There’s Ludacris. Lumakras… was granted accelerated FDA approval in 2021 at a daily dose of 960 milligrams.

Dan: But the company also had to test a lower dose: 240 milligrams. Which turns out to work just about as well, with a lot fewer side effects.

Vikas Saini (awards ceremony): That should be good news for patients looking to reduce the diarrhea, nausea, vomiting, and mouth sores that can occur.

Dan: One patient told KFF Health News, “After two months on that drug, I had lost 15 pounds, had sores in my mouth and down my throat, stomach stuff. It was horrible.”

So yeah, a lower dose sounds like great news. 

But not for Amgen. KFF Health News reported that by selling the higher dose, the company makes an extra 180 thousand dollars per year, per patient. So that’s what they’re doing.

At the awards ceremony, Vikas Saini said the story shows weaknesses in the FDA approval process. It’s long and expensive, but it’s not comprehensive. 

Vikas Saini (awards ceremony): There’s no way of holistically looking at how much does this cost? What are the side effects? What are the trade-offs? And what’s the strength of the evidence? We need different mechanisms and methods than just saying, “Hey, you’re approved. You can charge a thousand bucks and we’ll figure it out later.”

Dan: Before giving “final approval,” the FDA has asked Amgen for extra studies, but meanwhile, the drug is on the market, and the “FDA-approved” dose on the label is … the higher one. 

So, we’ve heard about procedures and drugs getting pushed that may… not be the best for patients. But do make money. And then there’s a story from the New York Times about folks selling products that … don’t seem to even exist.

Vikas Saini (awards ceremony): Here’s a story that’s gonna piss people off, perhaps. In 2023, a massive surge in Medicare billing for urinary catheters left patients shaking their heads. Up to 450,000 beneficiaries had bills for catheters submitted on their behalf.

Representing an 800 percent increase over previous years. Just seven suppliers were responsible for two billion dollars of these suspicious charges. 

Dan: That two billion dollars? The New York Times story says that could amount to a fifth of all Medicare spending on medical supplies for that year. That’s just seven “suppliers.” 

Vikas Saini (awards ceremony): When the New York Times looked into these suppliers, the curiously named Pretty in Pink Boutique, they found no medical business at its address, and its phone number rang a random auto body shop.

Dan: The Times found that Pretty In Pink had billed Medicare for more than a quarter-billion dollars. I said to Saini: This example seems to show, this kind of fraud — maybe you don’t even have to try that hard.​

Vikas Saini: I think it just illustrates, you know, the dollar flows through healthcare are so massive. Multiple trillions of dollars. You know, that a billion here, a billion there, it’s not even real money yet. 

Dan: So, with trillions of dollars moving around, and a LOT of people who need to hit their numbers, we get high-priced drugs that may not be worth the money and body parts sold off without anybody’s consent. Folks getting procedures they may not need. Companies billing for catheters no one seems to have gotten. 

And of course the Shkreli Awards “honored” more winners. Including a doctor accused of giving patients drugs they didn’t need — and which killed them. 

There was an insurance company that denied a claim for an air-ambulance ride for a baby — leaving the family on the hook for more than 97 thousand dollars. [That’s another one reported by our pals at KFF Health News, with NPR this time.]

And there were two stories about hospitals beholden to private equity investors. One has been accused of denying care to cancer patients and demanding payment upfront. 

The hospital denies that allegation, but NBC News found that their charity care policy had been altered in 2023 to exclude cancer treatment.

And as bad and ridiculous as all this sounds, still ahead, we’ve got top two honorees – well, dis-honorees —  and some bigger thoughts from Vikas Saini about what it all means. That’s right after this. 

An Arm and a Leg is a co-production of Public Road Productions and KFF Health News — that’s a nonprofit newsroom covering health issues in America. KFF’s reporters do amazing work — they’ve broken lots of Shkreli Award winning stories. I’m honored to work with them. 

The other private-equity story in this year’s Shkreli Awards involves a chain of hospitals, Steward Healthcare, that ended up bankrupt. The Boston Globe published a heartbreaking story with the headline, “They died in hallways. In line. Alone. Their deaths are the human cost of Steward’s financial neglect.”

The Shkreli Awards gave their number one spot to Steward’s CEO — well, now he’s the former CEO: Ralph de la Torre, who reportedly made a quarter-billion dollars over the four years leading up to the bankruptcy. 

They illustrated the story with a photo of an empty chair with a name card for de la Torre — in a Congressional hearing room. He skipped the hearing — he was reportedly on one of his yachts at the time. And got held in contempt. 

It’s a hell of a story. But if I had gotten to vote for the top spot, I would’ve gone with the company that became the runner up. 

Vikas Saini (awards ceremony): Number two, corporate healthcare behemoth exercises crushing power. So what started out as a small Minnesota health insurer is now the fourth largest business in the nation by revenue, controlling nearly 90,000 physicians and acquiring influence across the breadth and depth of the healthcare industry in the United States.

Dan: Ninety-thousand physicians. That’s more than three times as many doctors as work for the VA. 

Of course that company is UnitedHealth Group. Which also operates the country’s biggest insurance company, United HealthCare. And a BUNCH of other health care businesses. We’ve talked a lot about United on this show in the last couple of years.

And a team at STAT News — that’s a news outlet covering health, medicine and science — they did a massive series on United in 2024, documenting just how big United has grown, and how its tentacles interact.

For instance: UnitedHealth is the biggest player in Medicare Advantage — that’s the privatized version of Medicare. You’re in a United Healthcare Medicare Advantage plan, your in-network doctor is likely to work for United HealthGroup. 

STAT interviewed some of those doctors, who said they felt pressured to, one, spend less time with patients. And two … well, the second part needs a little setup: When you run a Medicare Advantage plan, you get extra money— a bonus — for insuring patients who are less healthy.

So the second thing these docs told STAT was: They felt pressured to use aggressive medical-coding tactics to make their patients look as unhealthy as possible. Which could earn that bonus for the insurance plan.

Vikas Saini (awards ceremony): According to STAT this tactic may have allowed the company to take tens of billions of dollars in additional payments from us, the taxpayers, over the past decade. UnitedHealth faces a federal lawsuit for this behavior, as well as an ongoing antitrust investigation. And of course, the company denies any wrongdoing.

Dan: When we talked, Vikas Saini said: If he were working for United, he might pursue the same kinds of strategies. That’s how you hit your numbers, keep shareholders happy. It’s the logic of so much of our healthcare system. 

It was the logic of Martin Shkreli, the guy who gives these awards their name. Shkreli did eventually spend seven years in jail. But not for jacking up the price of medicine. 

Vikas Saini: People say he went to jail and they link it to the pharma pricing thing, but he didn’t go to jail for that. He went to jail for this other thing, securities fraud. So it may be, raising the price that much was perfectly legal, and then that puts a different spin on his justification, which is he felt it was his duty to his shareholders to maximize what he could make.

Dan: By the same logic, United owes its shareholders maximum return. Grows bigger and bigger. And other players — trying to hit their numbers — they try to grow big enough to compete. 

Vikas Saini: Now, maybe someday, you know, we’ll have three behemoths duking it out. But again, the people left holding the bag and all these healthcare Godzilla-versus-King-Kong fights, the people left holding the bag are patients, communities, smaller hospitals, rural hospitals, and most of us, really.

Dan: When Godzilla and King Kong fight, they stomp on everybody.

Vikas Saini: Yeah, exactly. 

Dan: Meanwhile, United has been in the news recently, in a big way. In December, the CEO of the insurance division, Brian Thompson, was shot to death in New York. You probably heard about it.

Vikas Saini: I’d characterize my mood, or my reaction in response to that shooting to be one of alarm and urgency. The urgency is that we’ve been doing the Shkreli Awards for, you know, years, and years, and years. You know, the kind of anger and the kind of simmering resentments, they have been there for a while. And that’s what I’m alarmed about. Because we got big problems. If nothing else, it’s a flare being shot up to say there is a crisis and to call it anything less than a crisis is not real.

Dan: Vikas Saini sees this crisis as an extension of how our health care system works. Everybody hitting their numbers. And he asks, “Yeah, but, numbers of what?”

Vikas Saini: If we’re going to treat health care as a commodity and we’re going to have the magic of the marketplace solve all these problems, which some people still think is the way forward – I happen to disagree in many dimensions – but according to the logic of the marketplace, what’s the product off the assembly line?  If the product is health care activity, health care procedures, then we have the system we have, but what if the product were health? What if the product were wellness?

Dan: We don’t measure for that. He thinks again about his mentor, Bernard Lown.

Vikas Saini: He was always fond of saying that in most other businesses, the you get more efficient by doing everything faster. And he said, in health care, at least in the doctor patient relationship, you get more efficient by doing everything slower. 

Dan: Meaning, by taking time to really get to know patients. 

Vikas Saini: The quick example is, if I know someone for 10 years and they come in Friday at 4:30 with a headache, I have one response. If I’ve never met this person in my life and they come in Friday at 4:30 with a headache, I’m more likely to send them for a CT scan or see a neurologist or whatever the hell it is.

Dan: In addition — and contrast — to the Shkreli Awards, the Lown Institute gives out a Bernard Lown Award for Social Responsibility. 

It honors a “young clinician” — under the age of 45– who stands out for “bold leadership” in humanitarian work and standing up for justice. 

If you know somebody who could be a match, the deadline to nominate them for the 2025 award is January 31. 

Speaking of deadlines, we had a big one on December 31: The end of our year-end fundraising drive. 

We were racing to hit a big target: Between the Institute for Nonprofit News and a few super-generous donors, there were funds to match 30 thousand dollars in gifts.

Did we make it?

You bet we did. Or should I say, YOU did. Thank you SO much.  Because of your generosity and commitment, we’re starting out 2025 super-strong. 

Starting with: We’re bringing back the First Aid Kit newsletter, and making it WEEKLY. Starting in February. I’m super-excited.

Meanwhile, we’re starting an extremely cool partnership with KUOW, Seattle’s NPR news station. They’ll be helping more people discover this show– as a podcast. 

(No immediate plans for a broadcast version, but this is really big. In just in the first few days, we are seeing lots of new folks listening to An Arm and a Leg — and we’re literally just getting started.)

If you’re one of the folks who’s discovered this show with help from KUOW and the NPR network, welcome aboard!  I’m so glad you’re here.

We’ll be back with a new episode in a few weeks, and meanwhile, feel free to dig around in the hundred-and-some episodes we’ve published in the last six years. I think they’re all pretty good.

Catch you soon.

Till then, take care of yourself.

 This episode of An Arm and a Leg was produced by me, Dan Weissmann, with

help from Emily Pisacreta and Claire Davenport — and edited by Ellen Weiss.

Adam Raymonda is our audio wizard. 

Our music is by Dave Weiner and Blue Dot Sessions. 

Bea Bosco is our consulting director of operations.

Lynne Johnson is our operations manager.

An Arm and a Leg is produced in partnership with KFF Health News. That’s a

national newsroom producing in-depth journalism about health issues in

America and a core program at KFF, an independent source of health policy

research, polling, and journalism.

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

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor.

They allow us to accept tax-exempt donations. You can learn more about INN at

INN.org.

Finally, thank you to everybody who supports this show financially.

You can join in any time at arm and a leg show, dot com, slash: support. 

And here are the names of just some of the people who pitched in before the end of 2024.  Thanks this time to… [names redacted]

“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 its newsletters. You can also follow the show on Facebook and the social platform X. 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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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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Ballard helped write that resolution. He told “An Arm and a Leg” host Dan Weissmann that he first heard about charity care after listening to an episode of the podcast.

Ballard spoke with Weissmann about organizing as a medical student, bringing the resolution to the AMA, and the optimism he feels about the fight for charity care at the hospital where he works.

Credits

Dan: Hey there– 

A few weeks ago, we put out an update about charity care. That’s the commitment by hospitals to lower or just forgive bills for folks who can’t pay them. And our story was partly about how much less charity care hospitals give out than their own policies say they should. 

And a few days later, I got an email from a listener. 

Joey: I’m Joey Ballard, and I’m an internal medicine resident. 

Dan: Joey sent me a link: The American Medical Association — or AMA, the country’s largest group representing doctors, and for a long time one of the most powerful lobbying groups in the country– had just passed a resolution supporting legislation that would require hospitals to do more. 

Joey said he was the original author of that resolution. He had proposed it as a medical student. 

And he had gotten the idea from listening to… this podcast. We talked. Joey says he’s listened to every episode, since early in med school — and he sees it as a supplement to what that curriculum provides. 

Joey: I feel like you really have to seek out other sources to understand the system and sort of what I’m actually joining and what I’m facilitating as a physician… I mean, the podcast, like, really did that, and sort of helps peel back this other layer and sort of show more what it’s like for patients that I don’t always get to see from my perspective. 

Dan: This is, I am sure you can imagine, music to my ears. 

And now, he’s pushing for more changes, closer to home — at the institution where he’s doing his residency, the University of Illinois at Chicago. I wanted to bring you a little bit of his story to close out this year. 

This is An Arm and a Leg– a show about why health care costs so freaking much and what we can maybe do about. I’m Dan Weissmann. I’m a reporter and I like a challenge so the job we’ve chosen on this show is to take one of the

An Arm and a Leg Season 12, Episode 10 December 30, 2024 p.2 

most enraging, terrifying, and depressing parts of American life and bring you something entertaining, empowering, and useful. 

This is not the only time Joey has proposed a resolution to the AMA. And it’s not his only success. 

Joey: I’ve had four that have been adopted by the AMA, which is pretty, yeah, pretty exciting. And then I’ve had over 10 for Indiana, the Indiana State Medical Association. Um, so yeah, that kept me busy for sure. 

Dan: In Joey’s first year of med school at Indiana University, IU, he joined the med-student division of Physicians for a National Health Program — a membership organization that’s been advocating for single-payer health care for almost 40 years. The med-student version is Students for a National Health Program, SNaHP for short. 

Joey: I was pretty lucky. IU is actually the largest med school in the country. In terms of enrollment. And so we had a pretty strong Snap chapter, that had a lot of great events that really piqued my interest early on. 

Dan: Joey says SNaHP encouraged students to get involved with state medical societies, to help noodge the AMA towards supporting single-payer health care. Joey jumped in. 

Joey: And then like through that, I was like, oh, like, it’s not just single payer. I can sort of use this for any kind of thing in medicine I want to highlight or bring up 

Dan: In his first years of med school, Joey had proposed four resolutions that got adopted by the Indiana State Medical Association, including one supporting policies that would prevent some people from getting kicked off Medicaid. . By early 2023, he was ready to set his sights on the AMA itself. 

Joey: and that’s when I started like reaching out to other student contacts and figure out how does this work? How do I actually do this for the AMA in the first place? 

Dan: The answer turned out to be: Posting a suggestion on a dedicated online forum for student AMA members.

An Arm and a Leg Season 12, Episode 10 December 30, 2024 p.3 

Joey: I had posted several and the charity care one was the one that by far and away got the most feedback and people reaching out to me saying that they wanted to work on it and thought it was important. 

Dan: That was almost two years ago. Next came months of online collaboration with other students — Google docs and group chats — to draft and refine the resolution itself. 

Here are a few highlights from what they came up with: 

* Requiring nonprofit hospitals to check to see if any given patient qualifies for charity care BEFORE sending them a bill. 

* Close some loopholes in the federal law: Currently, the law only requires hospitals to HAVE a charity care policy, but it doesn’t set even a minimum standard for how generous that policy has to be. And there’s no mechanism to monitor or enforce even that requirement. 

The resolution says enforcement penalties should even include the loss of tax-exempt status — which is often worth many, many millions of dollars to nonprofit hospitals. 

They worked for months, and there were lots of steps still ahead. 

A big one was a vote by AMA’s student section — November 2023. Then — seven months later — the AMA itself asked a panel called the Council on Medical Service to consider the proposal and make a report. 

And the Council made a tweak: Instead of saying the AMA should “advocate for” policies like this, the Council’s version said the AMA should “support” them. 

Joey: …Which is an important distinction in that it’s not taking active measures to actively seek out these changes or reach out to lawmakers to draft these kinds of things. 

Dan: “Support” is more like, if someone else is pushing this, they can add us to the list of supporters. 

Then in November 2024, the AMA’s house of delegates considered the committee’s report.

Guess what? Not only did they back the resolution, they changed “support” back to “advocate for.” I asked the AMA what that meant they’d actually DO next. A spokesman told me he couldn’t disclose their legislative strategy, so fair enough. 

The meeting was in Florida this year, so Joey — in the middle of residency in Chicago — wasn’t able to be there. 

Joey: these meetings that are days long, you know, different places of the country. It’s especially as like residents that like, I don’t have the time to be able to do that. 

Dan: Joey says residency doesn’t leave him as much time as med school did, to work on AMA resolutions at all. But seeing the resolution pass? That was big. 

Joey: that inspired me to be like, okay, what can I do now? It was like, I feel like I need to take a look at what my institution is doing and what we can improve from that perspective. 

Dan: He’s started working on a proposal to get his hospital, the University of Illinois at Chicago, UIC to screen all patients for charity care before sending a bill, and to swear off practices like suing patients over bills they can’t pay, and seeking to garnish their wages. He says he’s been picking up support as he goes, starting with individual colleagues and other doctors… 

Joey: …and then the big one is our union. 

Dan: Residents at UIC are unionized. Joey says he brought up his pitch at a recent union meeting. His idea is a letter to the chief medical officer, with as many signatures as possible. The union said he could add them to the list. 

Joey says he hopes to have that letter ready in a few weeks. Then what? He’s not sure. 

Joey: There’s things we talked about during the union meeting that, you know, because UIC is a public institution, that there’s a lot more ways that it’s accountable and ways that we can find out things. Which I’m sure we’ll explore. But… optimistic for now. 

Dan: And he’ll keep at it.

Joey: I do find like extreme meaning in my day to day, um, as a physician, but I feel like this advocacy work is just something that’s even in some ways like deeper, and like means more to me. 

Dan: It means so much to me to know that doctors like Joey are making this their work. And it means a lot to me personally that people like Joey are finding the work we do here useful. 

In his initial note, Joey asked me where he might look for certain pieces of data. 

I sent him what I had, and forwarded his note to a couple people. One was Eli Rushbanks, who leads research and policy at Dollar For, the folks who have taught me the most about charity care. 

And the other was Luke Messac, the doctor and historian who wrote the book on some of these issues “Your Money or Your Life: Debt Collection and American Medicine.” You might’ve heard Luke on this show when his book came out in 2023. 

They both wrote back to Joey right away. Luke also wrote to thank me for introducing him to the folks at Dollar For. 

I hope we can keep on making connections for people fighting the good fights. There’s a lot of good fights to be had. 

If you’re catching this the day we release it or the next day– it’s the END of 2024. And our year-end fundraiser is still going. 

Gifts are still being matched. And in fact, we’ve got a new stretch goal. We’ve got backers who will match up to $30,000 in gifts. 

The place to go is arm and a leg show dot com, slash support That’s arm and a leg show, dot com, slash, support. Thank you. We’ll be back in January with more new episodes. 

Till then, take care of yourself. 

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

Adam Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions. Gabrielle Healy is our managing editor for audience. Bea Bosco is our consulting director of operations. 

Lynne Johnson is our operations manager. 

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America and a core program at KFF, an independent source of health policy research, polling, and journalism. 

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

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor. They allow us to accept tax-exempt donations. You can learn more about INN at INN.org. 

Finally, thank you to everybody who supports this show financially. 

“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 its newsletters. You can also follow the show on Facebook and the social platform X. 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).

In 1980, a young father named Denny Buehler was battling leukemia and needed to travel from Ohio to Seattle for treatment. To raise money for the trip, his friends and family organized a softball tournament.

Denny passed away a few months later, but his friends and family turned the softball tournament into a beloved tradition. For more than 40 years, they have hosted the games and sold hot dogs to raise money for other people in the area who need help with medical expenses.

In 2019, the Denny Buehler Memorial Foundation found a way to make a bigger impact, buying up old medical debt — and erasing it. Today, its partner in the effort, now known as Undue Medical Debt, has wiped away billions in debt.

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–

We are bringing back a story we first put out five years ago. We called it “Christmas in July” because it’s a story about giving. 

Some things have changed since 2019 — hi, we’ve had a couple big presidential elections and a pandemic. And there’s been some news on our beat recently. We’ll have some updates and some context to add at the end. 

For now, here’s the story:

In 1980, Denny Buehler was a 24 year old guy with three kids and leukemia.  He needed a bone marrow transplant, and in those days, that was not available in Cincinnati, where he lived. He had to go to Seattle, with his sister, who was the donor. And his wife.

Jenny: Well I remember my dad and I’m the only one of my siblings who does.

This is Denny’s oldest daughter, Jenny Spring. She was four when he went to Seattle.

Jenny: I do remember knowing he was sick. I remember, you know, we lived with his parents, our grandparents, while he and my mom and aunt Cynthia were in Seattle.

It was a long distance relationship:  Letters. Sending tapes back and forth– in those days, long-distance phone calls were expensive. 

Jenny: I remember reading my first book, go dog, go onto a cassette tape and sending it out to Seattle.

Back home, Denny’s other sister, Mary Beth, organized a softball tournament to raise money for all the expenses: Flights to Seattle, places to stay.  

[[ENTER THEME]]

And that softball tournament– that one-off event that was part of one family’s struggle– became the germ of something that is now– 40 years later — starting to help a LOT of people. 

This is An Arm and a Leg, a show about the cost of health care. I’m Dan Weissmann.

[[THEME FADES UNDER NEXT TRACK]]

The bone marrow transplant worked but Denny died of pneumonia a few months later. February 14, 1981

Jenny: We had a Valentine’s day party at school. I was in kindergarten and my mom’s brother, my uncle Tim came to pick me up from school, which was very strange. 

Jenny (cont): And he took me over to my dad’s parents’ house.

Jenny: And I remember I was eating a red heart shaped lollipop sitting in the front seat of the car cause kids were allowed to do that back then. And uh, I remember he stopped hard and I bit down on the lollipop It broke in my mouth and I looked over at him and, and I realized he was trying not to cry. 

[[ENTER MUSIC:  LOW-COAL CAMPER]]

They got there. The whole family was there– both sides– all waiting to give her the news

Jenny: I remember I said, my daddy died?

And that left the family in a tough situation, and not just emotionally.

[MUSIC FADES — OUT AFTER “HE WAS 24]

Jenny: You know, he was 24 and then my mom, you know, same age. Three kids, five and under, high school diploma. Trying to figure out how to make things work.

ED: You know we didn’t have a whole lot. 

This is Jenny’s brother Ed. Four years younger

ED: You know, there were times where we had to go grocery shopping at grandma and grandpa’s house, you know.

Jenny: That is true. I remember– yeah we’d go in and you know, mom would take food from the cabinets in the fridge and we’d take it home. And I’d, you know, they knew she was doing it. But they bought extra and it was just, you know, nobody talked about it. But that was the way it worked for a while.

The grandparents also stepped forward to help out in bigger ways. Like they purchased a house for the family in a close-knit little suburb, Greenhills. Good schools, a sense of community, all thanks to grandma and grandpa.

Jenny: Without them, I don’t know where we would’ve been. You know as a teacher, I work with a lot of kids that come from low income families and they tell me about their lives and I, you know, I reflect on that. That’s so easily how things could have been for my family without support from both sets of grandparents.

[[MUSIC STARTS FADING UP DURING NEXT TRACK:  Heartland Flyer]]

The life Jenny’s grandparents made possible included more than just food and shelter, a sense of safety. Being part of that community meant time for celebration, for PLAY. In Greenhills, it meant… softball.  

Ed: There’s a drive to the left.

Jenny: We kind of grew up at the ball field . You know, my mom played. My aunt Mary Beth, it was just, you know, kind of that softball life and it’s hard to know in my memory where the separation is between just being up there because they were playing in leagues– and when the tournament began.

The tournament. 

After Denny died, his sister Mary Beth and her friends organized a SECOND tournament. This one was to help out a friend who had gotten into a motorcycle accident.

After that, the tournament became an annual tradition. 

Announcer: We’re at Spoils Field in Green Hills for the 15th annual Denny Buehler Memorial Charity Softball Tournament. 

There was pretty much always somebody in the community to help. Somebody with big medical problems, not enough money. Sometimes more than one somebody. 

For Denny Buehler’s kids, the tournament was part of every year’s routine.

ED: My whole life, you know, it’s just been, it’s like Christmas or you know Easter or new years. It’s like a holiday for us in the family. You know, we have, another one that just happens to come in July.

Ed was an athletic kid, couldn’t wait to be able to play in the tournament himself. He had to wait until he was 17.  

[[MUSIC OUT]]

Then, not that many years later, when Ed was 25, the group of friends that had been running the tournament said they were ending it. 

ED: They ran it for 25 years and they were, they were just ready to be done, they were like you know we made it 25 years. It ran its course.

These folks had been young when they started it– in their mid-20s. 

[MUSIC FADES IN:  Perspiration — Lighter Touch (Adam, let’s kill the whistling, via stems please)]]

That was 1980. Now it was 2005. They had enjoyed a lot of good times, they’d worked hard, they’d helped dozens of people, played a LOT of softball, drank a lot of beer. It was a thing they had done for a long, important period in their lives. 

For Denny Buehler’s kids, it was more than that. It was an annual tradition they had always known– not for part of their lives, their whole lives. It was a celebration they could count on, a community event– a chance for their family, a family that had struggled, to be in a position to give back, to be leaders. And it was a legacy from the dad they had grown up without.

Jenny for one was NOT ready for it to end. A couple of her friends, and her husband said they would help. Of course Ed was game too. 

[MUSIC FADES AND OUT]]

Jenny told her Aunt Mary Beth she wanted to take over the tournament.

Jenny: And she was a little skeptical because I’ll tell you what, when I was, Oh gosh, back then, let me think. What was I doing in life? I was singing in a punk band.

[[MUSIC: Shut Up, B—  by the Hypochondriacs]]

Jenny:  [Laughs]  I probably had pink hair.

The band was called the Hypochondriacs!  This is their hit.

These days Jenny is a teacher, and a leader for her daughter’s girl scout troop. She sings with a community choir — with 1200 members — that she helped start. 

But at the time…

Jenny: I didn’t have a big track record for taking on projects and responsibilities. 

Jenny: I had learned to book and promote shows and I guess that would be the first type of project that I took on was promoting punk rock bands, but, you know, to my family, that wasn’t a serious thing. That wasn’t.

[[MUSIC BUMPS IN VOLUME, THEN OUT]]

But of course Jenny’s aunt Mary Beth wasn’t about to tell her no, she couldn’t try. Mary Beth introduced Jenny to the rest of the committee that had run the tournament. They taught her what they could about how the thing worked, and then it was up to her and whoever she could round up. 

Jenny: So I remember the first year we did the tournament, just not being able to sleep, you know?

[MUSIC IN:  Spunk Lit]]

JENNY, cont: Just being so nervous about if we were going to be able to pull it off

Jenny: It was my brother, my sister, my husband, a few of my friends — the guitar player from my band coming up there with purple hair.

They pulled it off. Barely. 

And they had a lot to learn. For instance, for a long time the most important money-maker for the whole event has been running a grill, hot dogs, and burgers, selling food. But the new generation’s first time out, they didn’t make much.  

It turned out their idea for STAFFING the grill had some built in problems. That idea seemed like a way to quickly grab some extra volunteer power:  When a team got eliminated, their players would take a turn staffing the grill. 

ED: And then we realized, wait, we’re not making any money because they’re just giving all the food away you know to their friends. They lost and they’re handing out burgers and hot dogs like they’re candy.

Over time, Jenny and Ed and the rest of their crew tightened things up– and got a LOT more volunteers, and made some new rules. 

These days the tournament raises about ten thousand dollars a year.  

[MUSIC OUT]]

[AMBI:  SOFTBALL!!] 

Here’s how it works. 

There’s 18 teams, double elimination. It starts Friday night– like a half a dozen games– then up bright and early on Saturday, there till late at night. Then all day Sunday, maybe into the evening. 

Ed says a couple thousand people might come every year. Alot of games, a lot of beer, burgers and corn on the cob.

[[AMBI FADES]]

In 2015, ten years after the new generation took over, they took a new step: turning this ad-hoc event, this thing that had just somehow kept going for more than 30 years– into an institution: 

They incorporated as the Denny Buehler Memorial Foundation, an official tax-exempt non-profit organization.  

The idea was, they could start to think bigger. 

ED: You know we’re working really hard. We’re doing really good things that we, we all really like and we’re all really bought into. But the impact is, is relatively small for the amount of work that goes into it. You know, I don’t want to say $10,000 is not a lot of money, but life is hard and when something’s gotten in your way, $10,000 doesn’t go really, really far.

Jenny: We would love to help more people. And so we talked for a long time about what that should be. And when I say talk, I mean we argued. (Laughs) 

And when she says a long time, she means two years. The foundation was incorporated in 2015. In the fall of 2017, they were…  still … talking. 

And then one day, inspiration. Inspiration that has led Ed and Jenny and the foundation to help their neighbors to the tune of a million dollars so far. 

That’s right after this.

This episode of An Arm and a Leg is a co-production with KFF Health News. That’s a national nonprofit newsroom producing in-depth journalism about health issues. Their reporters do amazing work — and win all kinds of awards every year. We’re honored to work with them.

So. Fall 2017. Jenny was driving home from seeing a friend– 

Jenny: And I had been talking to her about, you know, the foundation and how we were struggling to come up with an idea.

She passed through a neighborhood dense with hospitals. 

Jenny: So I’m driving through this hospital district and just all of a sudden I thought about what John Oliver did 

The year before, in 2016, the comedian John Oliver had done one of his most famous stunts on his HBO show “Last Week Tonight.” It was about a whole industry lots of us had never heard of: The buying and selling of 

JOHN OLIVER: DEBT.  

Debt. Especially medical debt. It turns out, if you’re hearing from a debt collector about an old debt, they probably don’t represent whoever you originally got in debt to– like say, a hospital. 

At some point, the hospital-or-whoever SOLD your debt — really, the right to collect on it — 

to someone else. For a lot less than you owed. 

JOHN OLIVER: and that debt buyer can then come after you for the full original amount. And if it can’t collect, potentially, it can then resell that debt for a fraction of what it paid to someone else who can still come after you for the original amount

Or sell it to somebody else for even cheaper. To the point where really old debts sell for pennies on the dollar. Actually, less than pennies.

To demonstrate how cheap it was– and how easily debt was bought and sold– John Oliver bought 15 million dollars in old medical debt, for less than half a cent on the dollar.

JOHN OLIVER: We thought: Well, instead of collecting on the money, why not forgive it? Because on one hand it’s obviously the right thing to do, but much more importantly, we’d be staging the largest one time giveaway in television show history. 

JOHN OLIVER: So what do you say? Are you ready to make television history? Let’s do this!

Jenny: It was just like an inspiration –I was like, this is the idea!

She got home and got to work.

Jenny: You know, I pulled out my laptop and I started researching and… 

She found that John Oliver had worked with a non-profit that specializes in raising money to buy and forgive old medical debts. They’re called RIP Medical Debt. 

Jenny: John Oliver had vetted them. 

Check. Good sign. She kept going. A few hours later, she was talking with Jerry Ashton, one of the group’s co-founders.

Jenny: I said, how are you doing this? How does this work?

And she liked what she heard.   

Jenny:  I love their story of how they were debt collectors. And realized how they could use that power for good.

Yep. Jerry Ashton and Craig Antico had been debt collectors for decades. They reversed course after working with volunteers from Occupy Wall Street, who raised money for a project called “Rolling Jubilee” to buy up and forgive old debts.

Jerry Ashton: We were, basically, a back office for them. 

This is Jerry.  

JERRY: They went out, and they raised a $700,000 eventually. 

Jerry says he and Craig helped them use that money to buy up — and forgive — $30 million in debt.  And when the Rolling Jubilee wound down, Jerry and Craig started RIP Medical Debt. That was in 2014. 

Jerry Ashton: The first year or so we starved to death. But then John Oliver discovered us. 

John Oliver brought folks to them– folks like Jenny Spring. 

This year, RIP Medical Debt has raised enough money to pay off a billion dollars in old debt. Craig Antico says two things allow them to do it for about a penny on the dollar. 

[[MUSIC IN: Lobo Lobo]] 

One is: They’re buying old debts. Hard-to-collect-on debts. The companies that own these debts now– the right to collect on those debts– they don’t expect to get 100 percent of what’s owed, or ANYTHING like it and anything they get, they’re going to spend years chasing. 

Craig Antico: Let’s say they’re only going to collect 2% over the next 10 years.

Cash upfront sounds good. The other thing is, RIP Medical Debt is buying in bulk.

Craig Antico: If I went to a hospital and said, “I see you have $1,000 bill here for Jane.” And I offered them $10, they’re gonna laugh. If I put a thousand of those Janes together 

That’s worth talking about. Instead of a thousand negotiations for ten dollars each, it’s one negotiation for ten thousand dollars.

So, it’s only because we abolish so much debt at one time that they’re willing to do this.

Jenny took it all in. It added up. 

[MUSIC STARTS TO FADE]]

Jenny: I came to the board meeting and I, and I said, Hey look, here’s a little bit of research I’ve done and I think purchasing and forgiving medical debt 

[MUSIC OUT] 

… and everybody was like, yes. I mean the consensus was instant.

That was the fall of 2017. In November, Jenny and Ed went to New York to meet the RIP Medical Debts founders in person.

By January 2018, the board had decided: They were in. With some details to work out.

ED: The interesting thing is the, the roadblock that we ran into was, Oh, man, but we love the tournament so much.

They took it slow, waited until that year’s softball tournament–before even announced what they had in mind. 

Jenny: You know, we printed up some flyers that kind of explained it. We wanted to be really sure that everybody knew that we weren’t changing the softball tournament.

That was July 2018. It took almost another year before they actually raised money for the new initiative. 

Finally, in June 2019, they put on an event at a local bar. They called it Blues, Booze and Brunch.

[MUSIC IN:  CHRIS LEE QUARTET, “BACKDOOR STRANGER”]]

They charged twenty bucks– ten for kids– and put out a taco bar for the spread. If you ordered a bloody mary from the bar, a dollar went to the cause. For entertainment, there was a blues band led by one of Jenny’s old punk-rock pals. 

There was a grill on site– and they figured out how to scramble eggs on it– but everything else had to be made in advance.

MUSIC!! 

Jenny: Let’s see: Our board member Tracy spent about an hour cracking eggs before we went up there. My sister baked breakfast muffins and little pastries and things like that for weeks and put them in her freezer 

That raised the first couple of thousand. A few weeks later, the tournament went ahead as usual– raising money for a teacher’s aide at a local school with five kids and kidney cancer. 

And then, it was back to raising money to forgive medical debts. Doing whatever they could think of. Local brew-pubs hosted events — a dollar for every pint sold on a fund-raiser night went to the cause. 

[MUSIC FADES,OUT BY MIDDLE OF NEXT SENTENCE]

And there was a lot of going on facebook, asking friends to chip in five dollars or ten.

Jenny: People work hard and we’re living in a time where wages are not keeping up with, you know, the cost of things. And so it’s hard to give for a lot of families. But when people realize 10 bucks can become $1,000, that helps somebody out in a really impactful way, then they’re willing to donate. 

[[MUSIC, “HELIOTROPE,” STARTED FADING IN UNDER “willing to donate”]]

Ed’s kids made tags for Christmas gifts– you know like, from Dan to whoever

ED: My wife broadcasted it on Facebook, Hey, we’re making gift tags. You can buy six of ’em for $5. Um, and they raised $255 just making Christmas gift tags. 

Which– because of the multiplier effect– means they wiped out more than $20,000 in medical debt. With Christmas tags.

The group did a bunch of asks on Giving Tuesday at the beginning of December. Jenny says they raised $2,000 on Facebook that way, which took them over the top:  They had raised more than twelve thousand bucks– enough money to buy that first million dollars worth of medical debt: 

Jenny: People are just going to get this magic envelope in the mail 

Magic envelopes. 

ED: that say: You had this debt that had gone to collections. And it was purchased and forgiven. You never have to worry about it again.

[[MUSIC SWELLS, THEN FADES UNDER NEXT CUT, OUT BY “MILLION”]

They called RIP Medical Debts and said: We’re ready to pay off that first million. What next?

Jenny: And immediately they come back and say there’s about $37 million in your area. 

DAN: Like if you wanted to take on the whole of Cincinnati, basically. 

JENNY: Uh, well we do. We intend to, we’re going to keep going. There’s no reason to stop. 

Jenny: Medical debt is unlike any other kind of debt.  You choose to take on the debt or you choose to die. 

DAN:  Yeah.

Jenny: And it’s just, it’s not right. It’s not right. And it’s like I tell my kids: When you have everything that you need, it’s your job– it’s your responsibility to help people who don’t. And I believe that to my core because that’s what people did for us when we needed it.  

Jenny says: We’re living in weird times. It is easy to be cynical. But this — making things a little bit better this is what we’re here for. It’s what we owe to each other. 

JENNY: And, why not? What else do you have to do?  

Dan: That’s the story, as we ran it in 2019. 

Some things have changed since then. For one, RIP Medical Debt changed its name, earlier this year, to Undue Medical Debt — that’s spelled U – N – D – U – E. Like this debt is no longer due to anyone. Or as in Medical debt is an undue — improper — thing. 

But it does sound like unDOing medical debt. Which, nice. 

They’ve also gotten a lot bigger since 2019, when they said they’d abolished a billion dollars in debts. By 2021, their website says that number was 5 billion. By 2023, it was 10 billion.

In the last couple years, state and local governments have started partnering with Undue to get old debts forgiven– often using federal money to buy up those debts: New York City, Cook County, Illinois; the state of New Jersey; And in Ohio alone, Cleveland, Akron and Cincinnati.

Recently, I caught up with Jenny Spring. COVID slowed down her family’s work on medical debt. The summer of 2020, when gatherings like softball tournaments were still basically a “no,” they organized a concert of sorts on zoom.

[AUDIO?] 

And in the years since, just running the tournament took pretty much everything they had in them. The pandemic was a big deal.

Jenny: It changed our lives in ways we couldn’t predict. Everyone’s lives had become more complicated.

Dan: And it’s taken a long time to regroup. 

But now, she says, they’re ready to take on more. And seeing how much Undue Medical Debt has grown– it leaves them thinking maybe they should take on something different.

Jenny: It’s great paying off medical debt. We’re really glad we did that. But, um, is there something more immediate that we can do? Is there something that helps people before they’re in medical debt, before they’re facing bankruptcy, before their family is, you know, on the brink of financial ruin?

Dan: One idea they’re thinking about draws inspiration from two sources they’ve drawn on before. 

One is family experience. In this case, professional experience. Jenny’s mom works in medical billing.

The other is… pop culture.

Jenny: I don’t, if you’ve ever seen the Incredibles, there’s this great scene where Mr. Incredible gets himself fired from his health insurance job and they’re mad at him because he’s telling everyone how to get their claims paid

Boss: They’re experts! Experts, Bob!] Exploiting every loophole! Dodging every obstacle! 

Jenny: Bob, they’re navigating the bureaucracy. Um, so, my mom is really good at navigating that bureaucracy

Dan: And over the years, in her spare time, she’s helped a lot of people navigate it. 

Jenny: Her eyes are sharp and when she goes through bills, she picks up on these things, right? And so, what if we could scale that up? What if we could raise enough money to hire contractors to do this for people for free, right? And maybe a lawyer or two to send an occasional threatening letter.

Dan: Jenny says they’re still workshopping this idea. It’ll take time to figure out details. Make a budget, a fundraising plan, all of it. More than a year. But I do love this idea so much. 

As we’re getting ready to release this, Luigi Mangione, who allegedly shot United Healthcare’s CEO, has just been arrested. 

People have been expressing their anger at insurance companies like United all week. 

It’s an anger that we’re deeply, intimately familiar with, around here. 

We say every time: We’ve taken on one of the most enraging, terrifying, depressing parts of American life. 

And no one of us can solve this. 

But that doesn’t mean there’s *nothing* we can do.  

So, among other things, I want to continue talking to people like Jenny Spring and her family. Over decades, they’ve been patiently, creatively doing what they can do. 

Put on a softball tournament. Raise money to relieve old debts. Find a way to help more neighbors stay OUT of debt. They can’t do everything. But they’re doing what they can, one step at a time.

Jenny says the board of the Denny Beuhler Memorial Foundation recently welcomed two new members — in their twenties. A third generation coming together to keep the fight going. 

I’ll catch you in a couple weeks. 

Till then, take care of yourself.  

This episode of An Arm and a Leg was produced by me, Dan Weissmann, with help from Emily Pisacreta. Our story was edited by Ann Hepperman in 2019. Ellen Weiss edited this re-release.

Adam Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions. Gabrielle Healy is our managing editor for audience. 

Lynne Johnson 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 issues in America and a core program at KFF, an independent source of health policy research, polling, and journalism. 

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

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor. They allow us to accept tax-exempt donations. You can learn more about INN at INN.org. 

Finally, thank you to everybody who supports this show financially. You can join in any time at arm and a leg show, dot com, slash: support. 

And here the names of just some of the people who have pitched in since our last episode. Plus, at the end, a little audio thank-you gift.

Thanks this time to… [names redacted]

And now for that audio thank-you gift: Here is Jenny Spring — do gooder, choir nerd, mom, and Girl Scout troop leader, listening to one of her old punk rock songs for the first time in a dozen years. Jenny: It’s kind of violent. Oh my god. So, it was, uh, I’m tired of your s I’m tired of your s And I don’t care if you cry. You better quit before I sock you in the eye. Ha ha ha.

“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 its newsletters. You can also follow the show on Facebook and the social platform X. 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).

“An Arm and a Leg” host Dan Weissmann talks with Dollar For founder Jared Walker about its recent work, and how new state programs targeting medical debt in places like North Carolina may change the way hospitals approach charity care. 

Plus, a listener from New York shares a helpful resource for navigating charity care appeals.

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–

Clara lives in New York City with her husband Remy and their family. And, recently, over the course of a year, they had some … medical encounters. At hospitals.

Nothing super-dramatic: Remy broke his ankle in August of last year. Hello, emergency room. Hello, ER bill.

They had a second baby in November 2023 — a boy! — who ended up needing to spend a day in neonatal intensive care. He’s fine. They named him Isaac.

And one night early this year, Isaac just… wasn’t looking good. Lethargic. Had a fever.

Clara: We decided to give him Tylenol. Um, and he spit it all back out.

Dan: They took his temp again. A hundred and three point five.

Clara: We started Googling, um, what is like dangerously high fever for a baby

Dan: And yep. For a baby that little, a hundred three point five is starting to get iffy. Like possible risk of seizure. But it was late at night. No pediatrician, no urgent care. Hello new, unwelcome questions.

Clara: The last thing you want to be thinking about is, Oh shit, this is going to be really expensive. You want to be thinking about, let’s go to the ER right now, make sure he doesn’t have a seizure.

Dan: So they went. And the folks at the ER gave Isaac more tylenol, he didn’t spit it out, his fever went down. They went home, relieved about Isaac and a little anxious about the bills.

After insurance, they were looking at more than eight thousand dollars. Clara didn’t think her family could afford anything like that.

And the billing office didn’t offer super-encouraging advice.

Clara: basically every time I’ve called, they said, why don’t you start making small payments now so it doesn’t go into collections.

Dan: However. Clara listens to An Arm and a Leg. Where we’ve been talking about something called charity care for years. This summer, we asked listeners to send us their bills – and tell us about their experience with charity care. Clara was one of the folks who responded.

Just to recap: Federal law requires all nonprofit hospitals to have charity care policies, also called financial assistance.

To reduce people’s bills, or even forgive them entirely, if their income falls below a level the hospital sets.

We’ve been super-interested in charity care here for almost four years, ever since a guy named Jared Walker blew up on TikTok spreading the word and offering to help people apply, through the nonprofit he runs, Dollar For.

Since then, we’ve learned a LOT about charity care. Dollar For has grown from an infinitesimally tiny organization — basically Jared, not getting paid much -to a small one, with 15 people on staff.

Jared says they’ve helped people with thousands of applications and helped to clear millions of dollars in hospital bills.

And in the past year, they’ve been up to a LOT and they’ve been learning alot. Before we pick up Clara’s story — which ends with her offering a new resource we can share — let’s get a big download from Jared.

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 chosen on this show is to take one of the most enraging, terrifying, depressing parts of American life- and bring you a show that’s entertaining, empowering and useful.

In early 2024, Dollar For put out a couple of big research reports documenting how much charity care doesn’t get awarded. And why people don’t receive it.

Jared: I feel like for a long time we have been looking around at the experts, right? Who are the experts? And where can we find them and what can we ask them?

Dan: Finally, they undertook a major research project of their own. They analyzed thousands of IRS filings from nonprofit hospitals, and compared what they found to a study from the state of Maryland based on even more precise data.

And they hired a firm to survey a sample of more than 11 hundred people. Then ran focus groups to dig in for more detail.

Jared: I think that what these reports have just revealed is like, we are the experts like dollar for actually knows more than everyone else about this.

Dan: The amount of charity care that hospitals do not give to people who qualify for it?

The data analysis produced a number: 14 billion dollars. Which Jared and his colleagues say is a conservative estimate.

The survey showed that more than half of people who qualify for charity care do not get it. About two thirds of those folks do not know that it exists. Some people who know about it just don’t apply. And some who do get rejected, even though they qualify.

Their conclusion: “We found that only 29% of patients with hospital bills they cannot afford are able to learn about, apply for, and receive charity care.” None of which surprised Jared.

Jared: It’s like, Oh, like our assumptions have been correct on this. Like people don’t know about charity care. The process sucks. Um, a lot of people that should get it, don’t get it. Um, and hospitals have put all the pain and all of the responsibility on the patient

Dan: Those topline findings put Dollar For’s accomplishments in context.

Jared: Like we have submitted over 20, 000 of these financial assistance applications.

Dan: 20, 000 people. That’s spectacular. That’s I know you’re counting the money. How much money is it that you’re talking about so far?

Jared: I think we’re closing in on 70 million, 70 million in medical debt relief. So

Dan: Right. It’s a start.

Jared: there you go.

Dan: It’s a start.

Jared: It sounds great, and then you see the 14 billion number and you’re like, oh, shoot. What are we doing? What are we doing?

Dan: laugh crying emoji.

Jared: Yeah, yeah, yeah.

Dan: And so, for most of the year, Jared and his team have been testing a strategy to take on a 14 billion dollar problem.

Jared: We have spent the year trying to work with hospitals. We came at this – how do we put a dent in the 14 billion? If it’s not going to be through TikTok, and it’s not going to be through individual patient advocacy, then what if we moved further upstream, and instead of patients finding out about us one to three months after they get a bill, what if they heard about us at the hospital?

Dan: Jared envisioned patients getting evaluated for charity care, and getting referred to Dollar For for help applying, before they check out. He thought

Jared: Maybe we could make a bigger dent into that 14 billion. And, I think that that was wishful thinking.

Dan: Wishful thinking. That’s how Jared now describes his hopes that hospitals would see that they could do better by patients, with his help, and sign right up to work with him.

Jared: Um, well they haven’t, Dan. So, we don’t have, uh, you know, we’ve got one hospital.

We’ve got one hospital. I don’t know if there’s a smaller hospital in the United States. It is Catalina Island Health. It is a small hospital on an island off the coast of California

And when patients go in there, they tell them about Dollar For, and they send them over. Um, that was what we were hoping to do with these larger systems.

Dan: Jared talked to a lot of hospitals. He went to conferences for hospital revenue-department administrators. He didn’t get a lot of traction

Jared: You know, this is one thing where I’m like, I don’t want to be totally unfair to the hospitals.

They’re huge entities that you can’t just move quickly like that.

it is going to take a lot more on their end than it would on our end, we could spin up one of these partnerships in a week.

And. They’re going to need a lot of time and it’s going to, you know, how do we implement this? Um, you know, with a small Catalina Island hospital it was easy, but if you’re talking to Ascension

Dan: Ascension Healthcare– a big Catholic hospital system. A hundred thirty-six hospitals. More than a hundred thirty thousand employees. Across 18 states, plus DC. Jared says they might get thousands of charity care applications a month. A deal to steer folks to Jared isn’t a simple handshake arrangement.

Jared: How do you, how do you do that? You know, how do you implement that? I mean, it’s a pain in the ass. And these hospitals, and more so, hospitals are not motivated to figure this out.

Dan: Yeah. Right.

Jared: Unless you’re in North Carolina,

Dan: North Carolina. In 2023, North Carolina expanded Medicaid. In July 2024, Governor Roy Cooper announced a program that would use Medicaid money to reward hospitals for forgiving Medical debt.

Gov. Roy Cooper: under this program. Hospitals can earn more by forgiving medical debt than trying to collect it. This is a win win win.

Dan: Under the program, hospitals can get more Medicaid dollars if they meet certain conditions. One, forgive a bunch of existing medical debts. Another: Make sure their charity care policies protect patients who meet income threhholds set by the state.

A third: they have to pro-actively identify patients who are eligible for charity care — and notify those patients before sending a bill, maybe even before they leave the hospital.

Jared: I’m very excited to see how that looks in the future. Because if you remember, the big four, like our shit list, is Texas, Florida, Georgia, North Carolina.

Dan: Jared’s shit list. The states where, over the years, he has heard from the greatest number of people who have difficulty getting hospital charity care. Where he often has to fight hardest to help them get it.

Jared’s shit list, the big four, were the four biggest states (by population) that had rejected the expansion of Medicaid under the Affordable Care Act.

Because of how the ACA was written, no Medicaid expansion means a lot more people who don’t have a lot of money and just don’t have ANY insurance at all.

It’s a giant problem. And North Carolina was one of those states where it was toughest.

Jared: And in, you know, the span of a year, North Carolina has expanded Medicaid, and created one of the best medical debt charity care policies in the country.

This law essentially says that they have to identify them early. So that’s like – on paper, you know, it sounds amazing.

Dan: Onpaper it sounds amazing. We’ll come back to that. But first, let’s make clear: This wasn’t a sudden transformation. The governor, Roy Cooper, who we heard in that clip? He spent like seven years pushing the state to expand Medicaid.

The legislature finally agreed in 2023. And then Cooper and his team spent months this year figuring out how to bake medical-debt relief into the plan. It took a ton of maneuvering.

Our pals at KFF Health News covered the process. Here’s Ames Alexander, who reported that story with Noam Levy, describing the process on a public radio show called “Due South.”

Cooper’s team started out by trying to quietly bounce their ideas off a few hospitals..

Ames Alexander KFF Health News: But then word got back to the hospital industry’s powerful lobbying group. That’s the North Carolina Healthcare Association. And the Association was not at all happy about it. .

Dan: They raised a stink. And claimed the whole thing would be illegal, the feds shouldn’t approve it.

Cooper and his health secretary Cody Kinsley got kept going– and they did get the feds to sign off on the plan. So it was legal.

But it wasn’t mandatory. They were offering hospitals money, but those hospitals needed to say yes. And that didn’t happen right away.

Ames Alexander KFF Health News: When Cooper and Kinsley unveiled this plan on July 1st, there wasn’t a single hospital official who would join them there for the press conference. Ultimately, though, all 99 of the state’s hospitals signed on. And it’s not, it’s not really hard to understand why they stood to lose a lot of federal money.

Dan: Lose OUT on a ton of NEW federal money. A ton. According to KFF’s reporting, a single hospital system stands to gain like 800 million dollars a year for participating.

And you know, thinking about that — how much money hospitals were considering turning down — kind of puts into perspective Jared’s experience trying to get them to work with him. He wasn’t offering anybody 800 million dollars a year.I said to Jared: Seems like this would be hard to replicate elsewhere. Other states aren’t going to be able to put that kind of new federal money on the table. And Jared said:

Jared: I think before like, Oh, can we replicate it? I’m just like, how do we make it? How do we make it work in North Carolina?

Dan: That is: How to make sure when it gets implemented, that it really works? Remember, Jared said before: This all sounds amazing ON PAPER. We’ll have some of his caveats after the break. Plus the rest of Clara’s story.

An Arm and a Leg is a co-production of Public Road Productions and KFF Health News — that’s a nonprofit newsroom covering health issues in America. KFF’s reporters do amazing work — you just heard one of them breaking down how North Carolina put that deal together. I’m honored to work with them.

Jared loves the idea behind North Carolina’s initiative on charity care: Hospitals have to screen people while they’re on site, and let them know before they leave the hospital what kind of help they may be eligible for.

Jared: Making sure that a patient knows what is available to them before they leave is very powerful. , like, that’s where the responsibility should be. Um, but how do you do it? And what happens if you don’t? Right?

Dan: In other words, Jared says, the devil is in implementation, and in systems of accountability. He’s seen what happens when those systems are pourous.

Jared: In Oregon, they had that law that was like, Oh, you can’t sue patients without first checking to see if they’re eligible for charity care. . And then you find all these people that are being sued that were never screened.

Dan: Yeah, Oregon passed a law in 2019 that required hospitals to evaluate patients for charity care before they could be sued over a bill. Jared’s colleague Eli Rushbanks analyzed a sample of hospital-bill lawsuits in one county. He could only see patient’s income in a few of them– but in almost half of those, that income was definitely low enough that the debt should’ve been forgiven.

He also took a big-picture look: In the years after the law took effect, two thirds of hospitals gave out LESS charity care than they had given before. Probably not what lawmakers had hoped for.

Hospitals in North Carolina will have two years to fully implement the screening requirement, called “presumptive eligibility.”

Some hospitals around the country already use automated systems for this: They check your credit, pull other data. Some of them use AI.

Jared says he’s seen some hospitals over-rely on the tech.

Jared: Some hospitals that are using presumptive eligibility tools will use that as a way to say, Oh, we already screened you. You can’t apply, but the patient is sitting there going, well, I’m eligible.

Your tool must have got it wrong. Cause these things are not a hundred percent accurate, or think of something like this, you lose your job, or maybe you’re at the hospital because you just gave birth to another human. So now you’re a household of four. It’s a four instead of three.

And obviously the presumptive eligibility tool isn’t going to be able to know that and calculate that. So if you go to the hospital and say, now I want to apply and they say, well, you don’t get to apply because we already screened you and you’re not eligible. That’s bullshit.

Dan: So, as North Carolina hospitals bring their systems online, Jared wants to push for a process where patients can appeal a machine-made decision. Jared: I’d love to be able to test that

how does that impact how many people are getting charity care and that 14 billion?

Dan: What do you think is your best shot for the next year of kind of moving towards 14 billion?

Jared: We are trying to figure that out. Um, obviously the election will play into that, but I think that if I had to guess where we would land, um, I think that we will double down on our patient advocacy work.

Dan: Jared says they’ll definitely also continue to work with advocates and officials on policy proposals. But…

Jared: The only reason anyone cares about what we have to say about policy is because we know what the patient experiences. So I think that if the, the more people we help, the more opportunity we will have to push policies forward that we want to see happen

Dan: So, this is a good place to note: If you or anybody you know has a hospital bill that’s scaring you, Dollar For is a great first stop. We’ll have a link to their site wherever you’re listening to this. They’ve got a tool that can help you quickly figure out if you might qualify for charity care from your hospital. Plus tons of how-tos. And they’ve got dedicated staff to help you if you get stuck.

And we just heard Jared say they’re not backing away from that work, even as they aim to influence policy.

About policy — Jared does have one other thought about their work in that area

Jared: We think that we’re going to get a little bit more feisty, uh, moving forward. So I’m, I’m excited about that.

Dan: I talked with Jared less than a week after the election. We didn’t know yet which party would take the House of Representatives, and of course there’s still a LOT we don’t know about what things look like from here. Jared had just one prediction.

Jared: I think we’re going to be needed, you know, that much more.

Dan: I think we’re all gonna need each other more than ever. Which is why I’m pleased to bring us back to Clara’s story from New York.

You might remember: Her family had three hospital adventures in the space of a year.

The first one, where her husband broke his ankle, got her started. The bill was eighteen hundred dollars, after insurance. A LOT for their family. But she had a few things going for her.

One, she knew charity care existed. Not because the hospital mentioned it.

Clara: No, I know about it from an arm and a leg,

Dan: And two, she had the skills. Because by training, she’s a librarian. And —you may already know this but — people come to libraries looking for a lot more than just books.

Clara: People all the time, will come in and bring in a form or need help navigating different systems and, and even just looking and trying to see where to start.

Dan: So, she went and found her hospital’s financial assistance policy online. Saw that her family met their income requirements. Found the form. Submitted it. Got offered a discount… that still left her family on the hook for more than they could comfortably pay.

And decided to see if she could ask for more. Was there an appeals process? There was.

But she didn’t find all of the information she needed online. The process wasn’t quick.

Clara: A lot of phone tag. And I don’t know if the bill pay phone lines are staffed better than the financial aid phone lines. But, you know, you get an answering machine a lot. You have to call back. The person doesn’t remember you. They’re not able to link your account.

All the things that I just feel like they’re really greasing the wheels of the paying for the bill option, but actually not making it especially accessible to do the financial aid and appeal process.

Dan: Clara hung in there. Here’s what she told my colleague Claire Davenport.

Clara: Being a listener of the podcast, I feel like I’m part of a community of people who are sort of maneuvering through the crazy healthcare system. And I do kind of have Dan’s voice in my head, like, this is nuts. This is not your fault. This is crazy and not right.

Dan: Also, when she was angling for more help on her husband’s ER bill, she knew anything she learned could come in handy: She was due to give birth at the same hospital pretty soon.

Her persistence paid off. In the end, the hospital reduced that 1800 dollar bill to just 500 dollars.

Two weeks later, Isaac was born. And spent an extra day in the NICU. That, plus the late-night fever that sent them to the ER left Clara’s family on the hook for about 6500 dollars.

Clara used what she’d learned the first time through as a playbook. Apply, then appeal to ask for more help. She says that made it a little simpler. But not simple, and not quick.

Isaac was born in November 2023. His ER visit was in April 2024. When Clara talked with our producer in early August 2024, she was still waiting to hear the hospital’s decision about her appeal. Was it gonna be approved?

Clara: In the event that it’s not, I think we just put it on like the longest payment plan we can. Maybe we would ask family for help.

Dan: Update: A few days after that conversation, the hospital said yes to Clara’s appeal. Her new total, 650 dollars. About a tenth of that initial amount.

Which, yes, is a nice story for Clara and her family. But the reason I’m so pleased to share her story is this:

Clara: Actually, I made a template that you can let your listeners use for making an appeal letter. I’ll share it with you.

Dan: Clara thought it might be useful because part of the application and appeal process — not all of it was just facts and figures and pay stubs. There was also an opportunity to write a letter. Which opened up questions.

Clara: I feel like It’s not totally clear what you’re supposed to put in the letter and who you’re appealing to and how emotional you’re supposed to make it versus how technical

Dan: Here’s how she approached it.

Clara: I was trying to think about if I was reading the letter, what would help paint the picture of this bill in context of everything else. trying to put myself in their shoes, reading it, what would be useful to kind of add more depth to our story than just the bill. And then also I just tried to be really grateful and express authentic gratitude for the great care we received.

Dan: She also included a realistic estimate of what her family could actually pay. Which the hospital ended up agreeing with.

And yes, Clara shared that template with us. We’ll post a link to it wherever you’re listening to this. Please copy and paste, and fill in the blanks, and please-tell us if it works for you.

A big lesson here is, don’t take no for a final answer. Don’t take “We’ll help you this much” for a final answer. Clara discovered one other thing: Don’t give up if it looks like you may have missed a deadline. She missed one.

Clara: So I called them and said, I’m really worried. ” I didn’t send it in time. It might be off by a couple days. Is this going to be a huge problem? And they said, No, don’t worry about it.

It’s totally fine. Just send it. So I’m thinking, Okay, wait. There are so many people who are going to get cut off or get their bill and realize, Oh, well, I totally missed the window. So let’s go for the payment plan option. When actually,

Dan: If you’ve got the chutzpah, and the time, and the patience to make the next call and ask… you may get a different answer.

It sucks that it’s this hard. But I appreciate every clue that it’s not impossible. And I appreciate Clara sharing her story — and her template with us.

I told Jared about it.

Jared: Yeah, that’s amazing. I mean, I love, uh, it’s so funny. it’s just the idea of you have this patient that is going through all of this stuff and is so busy trying to focus on their own health, do their own thing, and they’re out here making templates so that other people can , you know, jump through the same hoops because we know We’re all going to have to jump through the hoops, uh, is just, man, how frustrating is that?

But how amazing is it that you have, you have built a community of people that are, you know, willing to, uh, take those kind of crappy, not kind of, very terrible experiences and, um, and turn it into something that is helpful for other people. I think that’s amazing.

Dan: Me too! So this is where I ask you to help keep a good thing going. We’ve got so much to do in 2025, and your donations have always been our biggest source of support. After the credits of this episode, you’ll hear the names of some folks who have pitched in just in the last few weeks.

And this is The Time to help us build. The place to go is arm and a leg show dot com, slash, support.

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

We’ll have a link wherever you’re listening.

Thank you so much for pitching in if you can.

We’ll be back with a brand new episode in a few weeks.

Till then, take care of yourself.

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

Adam Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions. Gabrielle Healy is our managing editor for audience. Bea Bosco is our consulting director of operations.

Lynne Johnson is our operations manager.

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America and a core program at KFF, an independent source of health policy research, polling, and journalism.

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

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor. They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

Finally, thank you to everybody who supports this show financially.

“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 its newsletters. You can also follow the show on Facebook and the social platform X. 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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Her project, Fight Health Insurance, is a labor of love. It draws on her tech expertise and years of experience fighting health insurance: for gender-affirming care, for rehab after getting hit by a car, and even for her dog, Professor Timbit. 

An Arm and a Leg host Dan Weissmann talked with Karau about what it took to build the tool, how it works, and what she hopes comes next.

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–

Let’s start with introductions.

Carolyn: My name is Carolyn DeSimone, and I have a super cute dog. His name is Professor Timbit. He’s a professor because he’s always researching something.

Holden Karau: My name is Holden Caro, and I’m trying to make health insurance suck a little bit less

Dan: Carolyn and Holden are married, and I talked with them in September because listeners had been sending me links to a story in the San Francisco Standard, with the headline “‘Make your health insurance company cry’: One woman’s fight to turn the tables on insurers.”

That woman was Holden. She works in tech, and the story was about a tool she’d built, to help people fight health insurance: It writes appeal letters, using AI of course.

She’s made it available at a web site, “fight health insurance dot com” 

I lose count of how many of you sent me that link, but thank you, SO much. 

Holden and Carolyn live in San Francisco. I talked to them on Zoom. A local reporter, Lee Romney, helped set up mics for the two of them in their living room. 

The bookshelves in the background had — along with books –lots little stuffed creatures. When I squinted, I could see a pikachu.

Holden Karau: So there’s a few Pikachu’s actually. Um, and we have a, we have a stuffed poop. Um, it’s a wombat poop. That’s why it’s square. Here. 

Dan: And Lee can’t help commenting when she sees the wombat poop because it’s a brown, plushie cube with a face. 

Carolyn: Let me go grab it. I’ll show you. 

Dan: Lee can’t help commenting when she sees the wombat poop: it’s a brown, plushy cube, with a face. 

Lee Romney: That’s a very regular looking turd.

Carolyn: Wombats have square poops so they don’t roll away. 

Lee Romney: Oh, I didn’t know that. 

Carolyn: Yeah, they have like special muscles in their buttholes to make square poops.

Dan: This is the most fun zoom I’ve ever been on, actually.

Dan: And we were just getting started. 

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 chosen here is to take one of the most enraging, terrifying, depressing parts of American life, and bring you a show that’s entertaining, empowering, and useful.

As you might imagine, Holden’s decision to create Fight Health Insurance draws on both her significant professional expertise — she’s worked for Google, IBM, Apple, and now Netflix, and has written several technical books about programming — 

and her personal experience fighting health insurance– also significant. 

And the reserves of anger and cussedness she got from those experiences.

Holden Karau: I try and be a nice person, but health insurance does not bring out the best in me. 

Carolyn: I don’t think it brings out the best in anyone. 

Holden Karau: Certainly, certainly no one that I know.

Dan: Holden’s gender transition provided lots of experience. 

Holden Karau: Being a trans person in America, you have to navigate health insurance.

Dan: For instance, early on, Holden says she learned something that I didn’t understand until I’d been working on this show for a while: 

If you get health insurance from your employer, it’s pretty likely that your state’s insurance laws don’t apply to your plan. 

Instead, your plan gets regulated by the federal department of Labor, under a federal law called ERISA. Holden knows a LOT about ERISA and had to think for a minute about when she picked it up. 

Holden Karau: When did I learn about ERISA? I think I knew what an ERISA plan was from IBM. 

Carolyn: Oh yeah, cause IBM got you boobs.

Holden Karau: Yeah. IBM paid for my boobs. Originally I was going to get a tattoo saying like sponsored by, but – I – no. 

Dan: Holden says her fighting-insurance game — and those reserves of anger– leveled up in 2019. 

Holden Karau: Yeah. When I got hit by a car is when I like started reading health insurance regulations because I didn’t have a lot else to do and it was also really important that I figure it out.

Dan: Holden had been riding a brand-new Vespa. She was on 16th Street in San Francisco’s Mission District. Carolyn picks up the story here…

Carolyn: A woman pulled out of the parking lot of the Safeway to turn left without looking. 

Holden Karau: Yeah, across four lanes of traffic.

Dan: Holden says she had two broken wrists, and some broken bones in her legs. It didn’t take long for her to start thinking about medical bills. Even though she was on very strong painkillers.

Holden Karau: I think while I was still on fentanyl, I was thinking about insurance. 

Dan: She was thinking, this is gonna be… a lot.

Carolyn: Out of the trauma bay, but possibly not when you were out of the ER, was the first time we thought about, what’s this gonna cost? 

Dan: But they say the actual haggling with insurance didn’t start for a few days, when it was time for Holden to leave the hospital. And head to rehab. Her insurance, she says, had a place in mind.

Holden Karau: They really wanted to send me somewhere really, really shitty.

Carolyn: We looked at the reviews of them. 

Holden Karau: Yeah. And it’s like, they’re actively being investigated by the state… 

Carolyn: …for like hitting their patients with things. 

Holden Karau: Yeah. It was like, no, I don’t want to go there.

Dan: Carolyn said she pitched in to help get Holden to a better rehab, but then they say there were battles over how much treatment she’d actually get. By that time, Carolyn says, Holden was ready to go right at it. 

Carolyn: Once you got to the rehab, I think you started reading the forms for fun. 

Holden Karau: I didn’t have a lot going on at that point, and I was still on opiates, but the opiates were less strong, so my brain was starting to work again. 

Carolyn: You got bored.

Holden Karau: Yeah.

Dan: Holden says her brain was working, but not her body. She couldn’t hold a laptop, or really type. Or get out of bed to pick up her phone if it fell to the floor. But even with broken wrists, she was ready to fight for the rehab treatment she needed.

Holden Karau: it ended up working out okay, and part of that was my willingness to just, like, take things to an unreasonable length. I was like, really, I have nothing to lose here, so I will sue you. I am bored.

Dan: Holden says it helped that she could afford a good lawyer. 

Especially because there were more fights ahead. She says she had to fight for special crutches – cause she couldn’t use regular ones with broken wrists — and for more physical therapy when she got home. 

And there was an epic fight to make sure medical bills didn’t completely devour any settlement from the driver’s car insurance. This was a next-level legal education.

Holden says it took three years to get all the legal issues resolved. And, Meanwhile, she discovered that she’d developed a super-power — or call it a special interest. 

She noticed: If someone at a party, say, started talking about a problem they were having with health insurance, she was ready — eager– to take them down the rabbit hole. 

Holden Karau: they’d be like, complaining about a thing, and it’s like, oh no, like, yeah, yeah, yeah, this sucks, and they totally do that, but like, there’s actually a thing that you can do, it was like, okay, like, this is a thing that I know how to do. I like helping people

Dan: But conversations at parties weren’t much of an outlet.

Holden Karau: Like, I don’t get invited to a lot of parties, because not a lot of people are like, I would love to hang out with that lady that keeps talking about ERISA regulations or the Affordable Care Act.

Dan: And then, in January of 2023, Holden was talking with a friend at a tech conference.

Holden Karau: He has family that also has perhaps a non standard level of experience with insurance, and so like we were talking about generative AI… 

Dan: Generative AI. Chat GPT had been released less than two months before.. Holden and her friend ended up thinking.. .

Holden Karau: You know what, we could use this to actually, like, make the world suck a little less.

Dan: Could use these new generative-AI tools to fight health insurance. Like by having it write appeal letters when claims got denied. An idea was one thing. Making something would take more. Holden used what she knew about herself to make that happen.

Holden Karau: There’s, there’s different kinds of motivation, right? There’s like, uh, deadline driven, uh, programming, which is like when you agree to give a talk at a conference, you’re like, okay, I need to do this by this date. Otherwise I’m going to look really bad in front of a bunch of people. Uh, so I’ll do that a lot, but the other equally strong motivation, I think, is hate. And I hate insurance companies. Because they’ve just like, they’ve been so mean to me and my friends. 

Dan: Then, a few months later, another conference provided an opportunity to combine those motivations: A hackathon — a competition where engineers and developers  get a limited amount of time to put a project together. . 

Holden Karau: I was like, okay, I’m gonna work on this for the hackathon. 

Dan: That gave her a deadline: 30 days. Her project came in third. 

Holden Karau: which, not fantastic, but, like, not terrible, you know.

Dan: Third out of more than 50. Plus, it worked! Kind of. 

Holden Karau: So like it would say things like, this procedure should be covered because of the llama llama virus, and it’s just like, oh, well that, that’s not a real thing, but like, good try, good try, right? And it was like, you know, like, it’s interesting, and like, it kind of sort of works, but it’s also, it’s not great, right?

Dan: Getting to the next stage would require a new approach, and some motivation — more rage — which came from a surprising source.. That’s next… 

This episode of An Arm and a Leg is a co-production with KFF Health News. That’s a national nonprofit newsroom producing in-depth journalism about health issues. Their reporters do amazing work — and win all kinds of awards every year. We’re honored to work with them.

So Holden came out of that hackathon with something that kind of worked. Kind of. 

Then she says she found herself in a fight on behalf of someone else in her household.  

Holden Karau: Timbit, our dog, who’s amazing, I love him, had a bunch of dental work done and the pet health insurance people were jerks about that.

Carolyn: They said he didn’t need anesthesia to have teeth pulled. They rejected the anesthesia. He’s 11 pounds. He can’t be awake during…

Holden Karau: I don’t even know if like, don’t, I don’t know anyone can be awake for that. And so I was like, okay, cool, how can I put the screws to them? Because you were mean to my dog. I’m used to health insurance companies being mean to me to the extent that I’m almost numb to it at this point. But like, my dog is precious and perfect. I read the plan documents because I’m a nerd. And like, this is not, Your obligation, like, you are obligated to do more. You would have to prove that this is not necessary, and I don’t think you can do that.

Dan: Holden says she also read up on state regulations for pet insurance, and let the company know she’d found grounds for some potentially-serious challenges.

Holden Karau: and that, along with, uh, some other, perhaps less than polite words, did result in them changing their opinion about whether or not he should be awake for getting his teeth pulled out. 

Dan: Well done. Well done. 

Holden Karau: And then it s was like, okay, you know what? Yeah, I should put in the time to finish this, right?

Dan: Finish the tool to fight insurance companies.

Holden Karau: Like, I’ve got this thing that’s like kind of half baked, but I should, I should take this over the finish line. Like, screw these insurance companies.

Dan: To do that, she was going to need some data to train her AI — the technical term is “large language model” — or “model” for short. 

Holden Karau: Because the big problem, and part of why we got this like, llama llama virus thing, is like when you don’t have data to train a model, it’s bad, right? It’s like garbage in, garbage out. And this is also part of why like, a lot of large models on the internet are bad, they’re like trained on Reddit.. 

Dan: Yeah, so they learn HOW people use language. But they don’t learn facts. They’re like a really smart 18 year old who hasn’t done the reading but is good at bullshitting. Because they know what “an answer” sounds like in this context.

Holden needed to train her model on a bunch of factual data for health insurance appeals and denials. And she found it. Thanks to the California Department of Insurance. If your insurance denies a claim, and it’s regulated by the state of California, you can request an independent medical review from the Department of Insurance. 

Which decides whether your procedure was medically necessary. Every decision gets published online. Describing the facts. The diagnosis. The procedure. And the reasoning behind the decision.

Holden Karau: And, like, that’s the information that you want, right? You want to know, like, for a diagnosis and procedure, why is this necessary? Why should the insurance company have to cover this?

Dan: And all that information was in this data — for many thousands of appeals, many thousands of decisions.

Holden Karau: I found the independent medical review data. And I was like, okay, cool. I can use this to make the model better.

Dan: Holden started whipping the model into shape. After about six months, she paid a developer to work up a web version — something that you don’t have to be a tech person to actually use. She bought hardware — servers. All told, she thinks she spent maybe ten thousand dollars, plus a year of nights and weekends. 

In August of this year, she had something ready to show the world.

She emailed a local reporter who had been writing about health insurance.

Holden Karau: I’m like, this local kid who’s been working on this thing. It seems like it might be, like, kinda on your beat. If not, like, absolutely no stress, but, like, let me know. And if you wanna chat about it, like, I’m happy to jump on my Vespa and like, swing over and I can talk with you about it and show it to you. And, um, and she emailed me back and was like, yeah, that sounds cool.

Dan: What Holden showed that reporter — pretty much what you see now at fight health insurance dot com — isn’t a magic wand. It doesn’t do EVERYTHING for you.

You’ve gotta make a scan of the denial letter from your insurance company, and run it through “optical character recognition” — turn it from an image of text into actual text. Oh, and zap personally-identifiable information — like your name and address — from the document. So none of that gets captured by any machines.

You can also write up a narrative with any details — that’s optional, but seems like a good idea. And you can upload your documents from your insurance company that describe your benefits. That also seems smart. 

You feed it everything, and it gives you back a draft of an appeal letter — actually, more than one, so you can pick and choose, and make edits. 

So, there’s some homework. And it all still looks kinda early-stage. The site isn’t super-pretty. And you know how early, not-quite-officially-released software gets called a “beta” release?  This one says “alpha” — earlier than that. 

So, no guarantees. But it’s something. 

Holden showed it to that reporter, and the result was the article that a bunch of listeners started sending me.

By the time I talked with Holden and Carolyn, about three weeks later, Holden said about three hundred people had used it. She’d been keeping an eye on how it performed.

Holden Karau: It seems to generate things that look good, right? Which, this is important to me. Um, I also get emails from people saying like, cool, thank you, thanks for doing this, um, so that’s pretty rad. 

But like, I assume that you get some of the same stories there’s some people where they reach out, they’re like, Hey, this is my specific situation. Like, what can I do? And it’s often just like, I wish I could help you. But like, this is just completely fucked.

Dan: I do get those, of course. It never gets easier. [And, I should say: If you’ve written me and I haven’t responded, don’t assume it’s because your situation is completely fucked. It’s just as likely that I can’t keep up with my email, but I REALLY APPRECIATE you writing to me, no matter what. I learn so much. Including things that don’t suck, like when a bunch of you wrote to me about Holden and her project.]

When we talked, Holden said she hadn’t gotten much information about whether these appeals were working. Insurance companies generally give themselves a month to respond to appeals. And it hadn’t been that long.

Meanwhile, there was the question of where this project could go next. 

Holden Karau: Do I do it for like, more than evenings and weekends?Or do I do it for evenings and weekends? And I don’t, I don’t know what the answer to that is yet.

Dan: Holden had ideas about ways it could earn income — maybe by charging doctors and other providers, but keeping the service free for patients? 

When I asked how much it would cost to take Fight Health Insurance to the next level, make it available and useful to — you know, everybody who might need it– and keep it up to date, and keep it reliable and stable — she started thinking, and the numbers kept going up: a hundred thousand, two, four, five, more.

A few weeks later, Holden came to Chicago, where I live, for a conference. I went to meet her! And I got an update from her. 

Holden Karau: there’s some people who, who like sent in their appeals and, and things got approved, and that’s pretty awesome. I’m, I’m pretty stoked with that. I guess the, the other thing is like, people seem generally positive and happy. So yeah…

Dan: Thank you for this thing that didn’t exist before.

Holden Karau: when the alternative is just giving up hope, like, this is so much better than just going, like, God damn it.

Dan: She was still puzzling over how Fight Health Insurance could grow. She said when she asked a friend with experience in the startup world for advice about talking with business or venture capital folks, the friend’s response was pretty immediate.

Holden Karau: What are you doing? No, no. They are gonna like, they’re, hm… they’re gonna lead you down the path that you are trying really hard to avoid.

Dan: Charge patients money, maybe harvest their data for who-knows-what icky purposes. Basically turn into another shark. 

Holden Karau: This is probably just my naivety, but I really I have this belief that the consumer version should be free always. And so one of the tricks is finding someone that agrees with that, who’s willing to give us money. Because, otherwise, It’s like, nah, it’s cool. But then the second question is, like, is there a way to shift the economics of denials, such that, like, insurance companies, like, it just costs them more to be dicks, right?

Dan: Assuming she finds the right kind of partner, there’s a question of how Fight Health Insurance would earn income to keep itself going. 

She’s still interested in the idea of selling a paid version to doctors and other practitioners, and when we talked she’d heard from some folks in that world. 

Holden Karau: Of the professionals reaching out, a lot of them were from the mental health field. That’s something where, that’s an area that I feel strongly about. Like, I would not be here if it was not for access to mental health. 

Dan: Meanwhile, she says she’s squeezing in about a day a week for the project, in between her full-time job and the rest of her life.

Holden Karau: It’s probably not super healthy. Um, yeah. There’s this whole trading sleep thing, which is, in the long run, not a great bargain.

Dan: So you’ve been thinking, at some point, there’ll be some choices to make.

Holden Karau: Yeah, I mean realistically probably January will be when I know if I can like work on this more full time or not. Otherwise it’ll continue to exist as the thing that I do when I have free time and no one’s looking too closely.

Dan: For now, Holden’s taking things one step at a time.

Holden Karau: One of the other things that I’m reminded of what one of my therapists reminds me of so frequently is that we are not responsible for fixing the world, but we must participate in the world’s healing.  

Dan: Yep.

I think that for some of us, our existence is enough, but when we can, I think it’s good to find the small things we can do because otherwise we would do nothing.

Dan: Can I please say, Amen.

If you give Holden’s tool a try, I am SUPER curious to hear how it turns out. 

If you do, I should mention:  The privacy policy on Holden’s site says that if the enterprise ever, say, gets sold, then whoever buys it could end up with any data you give it.  

So Holden actually suggests: maybe create a temporary email address for working with her site. Just in case some shark ends up with this stuff. (It needs AN email to send you its results. The site asks for a name too. You could consider using a fake one.)

We’ll have links to fight health insurance — and to instructions for creating a temporary email address — wherever you’re listening to this.

And we’ll be back in a few weeks with a brand-new episode.

Till then, take care of yourself.

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

Adam Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions. Gabrielle Healy is our managing editor for audience. 

Lynne Johnson 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 issues in America and a core program at KFF, an independent source of health policy research, polling, and journalism. 

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

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor. They allow us to accept tax-exempt donations. You can learn more about INN at INN.org. 

Finally, thank you to everybody who supports this show financially. You can join in any time at arm and a leg show, dot com, slash: support. Thank you so much 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 its newsletters. You can also follow the show on Facebook and the social platform X. 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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Cara Anthony sits down with “An Arm and a Leg” host Dan Weissmann to talk about the health effects of breaking silence and how it could help heal intergenerational trauma.  

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 Weissmann: Hey there. We’re doing something a little different this time. This story is not about the cost of healthcare, not in dollars and cents, and it’s actually not about doctors or hospitals or medicines, but it’s a story about health and about sickness and injury and about how people can care for each other and help each other heal.

And, I will tell you, it is a tough story. This is a story about racism, violence, and ongoing intergenerational trauma. So, you know, however you might need to take care of yourself around a story like this, I want you to do that. But this is a story I’ve been hearing about and looking forward to talking about for years.

Cara Anthony is a Midwest correspondent with our partners at KFF Health News, and she’s been working on a documentary and a podcast about this story since 2020. And now her work, Silence in Sikeston, it’s out in the world. PBS aired the documentary in September and the fourth and final podcast episode came out just last week.

They connect the stories of two young Black fathers who were killed in the small town of Sikeston, Missouri, almost 80 years apart. Cleo Wright was lynched by a white mob in 1942. They dragged him from the jail to the Black section of town, and they doused his body with gasoline and lit the fire in front of a church on a Sunday morning.

In 2020. Denzel Taylor was killed by Sikeston police, he was unarmed. Police fired at least 18 shots. So the podcast Silence in Sikeston, it explores racism, violence, and systemic bias as public health problems, literally making people sick across whole communities and across generations. And it asks, among other things, can breaking silences be healing?

This is “An Arm and a Leg,” and usually it’s 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. I’m thankful to get to talk with Cara Anthony about her work. Cara, thank you so much for joining us.

Cara Anthony: Thanks for having me, Dan.

Dan Weissmann: My pleasure. How, how did you become aware of these stories and how did you decide to pursue them?

Cara Anthony: In 2020, I was sitting on my couch, watching the world erupt, you know, watching what was happening to George Floyd in Minneapolis. And I really wanted to join the conversation that was happening. And I decided, you know what? While the world was paying attention to Minnesota at that time, I knew that there were other stories out there. And so, I’m a Midwest correspondent for KFF Health News. And I thought I should take a look at what’s going on in Missouri. And I decided really to look at rural Missouri and Black communities in rural Missouri and kind of stumbled upon a part of the state known as the Boot Heel. That’s Southeast Missouri. It’s called the Boot Heel because that part of Missouri kind of sticks out like a boot and um, ended up in Sikeston, made a call in 2020 to the city’s first Black clerk there. And she said, look, if you want to know what it’s like to be Black in the Boot Heel, you need to have a conversation with my grandmother, Mabel Cook. And I said, okay, you know, pitched it to my editors. I thought it would maybe be a 900 word story and it ended up being a four year journey. And here we are now.

Dan Weissmann: Wow. Okay. How did you pitch this story initially? I mean, you are working then as now for KFF Health News. How did you pitch this story? ‘Like, well, so here’s a health story.’ How was that part of the pitch?

Cara Anthony: Yeah, I mean, I told my editor, look, the whole country is looking at police violence and police killings, but also I knew that our country had lived through a lynching era, and I just said, look, I want to write a story about racial trauma. You know, at the time I was looking for signs of like PTSD and people who were still living there and had witnessed this lynching that happened in 1942. And my editor you know, at first she was like, okay, you know, go ahead. Why don’t you go down there and see what you can find? And the more I started talking to people, the more I realized that this informed their lives, how they related to each other, how they related to even law enforcement today, and that’s when I decided, ‘you know what? This isn’t just a story about history, but rather we need to look at police killings and police violence today.’ And that’s when I decided to look into the story of Denzel Taylor.

Dan Weissmann: And so his story, his death had happened just a few months before you made your first phone call to Sikeston. It didn’t become part of your reporting project until later.

Cara Anthony: There were a few local news headlines about what happened to Denzel, but mostly, you know, people ignored it. There was a lot of silence around his death as well. And that’s largely because, Dan, people don’t – and still today – people don’t feel comfortable talking about this stuff. It’s hard. Um, for some people they feel as though their, their lives could be in jeopardy. A part of the reason why we call it Silence in Sikeston, you know – at first I was calling it, you know, Black in the Boot Heel. I thought that’s a clever name. And then I thought that’s, that’s just wrong. This is deeper. People are holding in stories and I’m getting more no’s than I am yeses. And I said, you know, I just told my editor, I said, we have to call this Silence in Sikeston.

Dan Weissmann: Like, what reasons did people give for not wanting to talk to you? Why, and, and beyond what people said, like, why do you think so many people didn’t want to talk to you?

Cara Anthony: You know, I think there’s a huge fear still. You know, Sikeston is a town of roughly 16,000 people. And, I mean, if you know small town politics, you understand what it’s like to be in a smaller city. Everybody knows everybody, right? Also damage had been done there before I arrived and decided to start, you know, asking questions and wanting to tell stories. People really feared retaliation because of racial trauma and because they didn’t want their family member to be next. You also have just the weight of what happened to Cleo, right? You know, this is a Black man who was lynched on a Sunday morning in front of the entire community. You know, they drug Cleo Wright to the Black section of town to make a point. That is something that sticks with you. So Black people had their reasons for not wanting to talk other stories, you know, um, things that had happened within the Black community that made them fearful, but also, you know, white residents in town didn’t want the city to look bad. Every town has secrets and, um, some of these secrets need to be unearthed and discussed because, um, they can make you sick if not.

Dan Weissmann: Yeah, we’ll get right to that. What did you learn about the health costs of living with violence in silence?

Cara Anthony: In episode three of the podcast, we talk about something called anticipatory stress, which means like you’re always waiting for the other shoe to drop. So maybe you know, the next generation, they’re like, okay, we’re okay.

Y’all are, you know, we’re new here. Um, but then you have your mothers and fathers and grandmothers who are worried about, well, we want to keep you safe and that is stressful. And we know that, uh, stress can wreak havoc on your body. You could start to see the physical manifestations of that show up as cancer, show up as diabetes, show up with heart issues, anxiety, depression, the list goes on and on. You can even become suicidal. That is hard to say, but when you feel like you have no one to talk to, it’s a terribly isolating feeling, Dan.

And as I kept talking to people in Sikeston that anticipatory stress, that kept coming up.

Dan Weissmann: The anticipatory stress kept coming up. Like what did people say?

Cara Anthony: I mean, mothers were genuinely concerned, genuinely concerned about their children, especially when we think about police violence and police killings. Now in 2020, Denzel Taylor was a young Black father who was shot and killed by Sikeston PD. And even though people really didn’t talk about it openly, the body cam footage appeared on Facebook. People did trade around the video and saw what happened. People whispered about it in the same way people whispered about what happened to Cleo Wright when he was lynched in 1942. And so, they were concerned. I don’t want that to be me. I don’t want that to be my child or grandchild. and this is not just a story that is unique to Sikeston. And let me say that, you know, police violence is is everywhere. Police killings occur across this country. You know, and back in 2020, there was a stat out there that said that Black men had a one in 1000 chance of being killed by the police. And so yeah, anticipatory stress is a huge issue that kept coming up in the reporting and one that we should be talking about even more.

Dan Weissmann: Coming up: As Cara Anthony reported on Silence in Sikeston, her dad broke a long silence of his own. That’s next.

An Arm and a Leg is a co-production of Public Road Productions and KFF Health News. That’s a national, nonprofit newsroom that produces in-depth journalism about health issues — including Cara Anthony’s “Silence in Sikeston.” Now, back to my interview with Cara Anthony about her work.

Dan Weissmann: One thing you do in the podcast is you, um, explore how some of these questions have come up in your own family. And you bring us some intimate conversations and some really tough conversations. Um, what, especially, as you were reporting this story, your dad broke a silence of his own to you. Um, it turned out that years before you started this reporting, he had looked into the death of his own uncle, Leemon, because he’d had a sense, your dad, that the stories he’d gotten from the family weren’t the whole story. And after you had started reporting the story, he showed you what he’d found. You sat together in his home office, and he showed you his uncle’s death certificate saying Leemon Anthony was shot by police and lists the cause of his death as homicide, but nobody was charged with a crime.

Wilbon Anthony: It says, shot by police or resisting arrest. Well, no one ever, I never heard this in my, uh, whole life. Then item 21 enlisted causes of death: accidental suicide or homicide? And enlisted that item as homicide.

Cara Anthony: Okay. Okay. Um, that’s a lot. I need to pause.

Dan Weissmann: So you let us hear your response to that and saying ‘that’s a lot.’ And then you let us hear the click of a tape recorder stopping. Can you tell us more about that moment and what happened next for you?

Cara Anthony: Yeah. I mean, look, my uncle was killed by the police in 1946 in West Tennessee. For most of my father’s life and also mine we were told that he was killed in a wagon and mule accident. You know, and so hearing the facts around what happened to him seeing my dad pull up what I would call almost like a pain diary that was just sitting on his desktop of his computer, where he was just filing away things, collecting things, newspaper clippings, Leemon’s death certificate. Um, there’s a lot to take in in that moment, and I’m still grappling with that and what that means, and how I will even share that story with my daughter one day. But yeah, it’s a ton of process and our family is still processing it. You know, I think the next step for us is trying to go and find where Leemon Anthony is buried in Tennessee for some closure now that we know what actually happened to him.

Dan Weissmann: Why do you think your dad chose that moment to share what he learned with you?

Cara Anthony: He saw me, you know, diving into these stories in Sikeston and I don’t know if he always thought that I was particularly interested in our family story, if I cared, you know, um, we would go to family reunions and I was a kid, you know, so I would want to go out and go bowling or go to the arcade or do whatever my younger cousins were doing. And I heard whispers of people talking about Leemon at family reunions, but I never really stopped to pay attention. And I think as he saw me traveling back and forth to Sikeston and bringing home these stories – because we lived together while I was reporting this out– I think he really saw it as an opportunity for us to have a difficult conversation about our family’s history and our family’s story. And I’m really glad that he did because it changed even my reporting approach once I realized what my dad was keeping to himself for all these years.

Dan Weissmann: Has there been a change in your relationship with your dad?

Cara Anthony: Yeah we’re talking about more and same goes for my mom. You know, my mom just called me last night with a story, because she, we took a family trip down to Sikeston, um, about a year and a half into my reporting and my parents grew up in the rural South. And so I said, well, let’s stop at a cotton field, you know, wouldn’t that be fun? And they’re just like, ‘okay.’ You know being a Black American, I understand that cotton was weaponized and, you know, my enslaved ancestors received nothing for their labor. Now I’m totally aware of that, but I had never been to a cotton field and I thought it would be a good field trip for my daughter and, you know, my mom and I were talking about that last night and she said, well, did you know that, um, sometimes my grandfather when it was cold outside, he would chop down the entire stock of cotton and bring it inside of our home and place it in front of our wood burning stove so that we could pick cotton inside of our house so that we wouldn’t be too cold, you know, um, during the winter months and I’m just like ‘what?’ It’s like she’s been working like she was a grown woman since she was an elementary school student. And that was really hard for me to think about, to process. I was really sad when she shared that story with me. I realized that it informed how she raised me and my siblings and even how she interacts with my daughter. And so, I was grateful, but also just emotionally devastated because these are absolutely necessary conversations and I always think about now, like, what if I hadn’t raised my hand to go to Sikeston? Would I have missed all of this? So I’m really grateful and thankful that they’re now opening up and sharing these stories as tragic and as horrific as they may be. These are necessary conversations.

Dan Weissmann: You’ve mentioned here and you mentioned in the podcast that you have a kind of ongoing inner conversation with yourself about as a parent, how do you share and when do you share, um, these stories with your daughter. You hear a conversation that you have with your daughter that’s, you know, I think an example of aiming to, um, create space for closer communication. I’ll play it here.

Cara Anthony: Sit over, come over here, come over here, seriously, do you remember a couple of weeks ago when you were crying and I told you to fix your what?

Lily: Face.

Cara Anthony: That wasn’t very nice. I want you to know that we. Can talk about things, because when we talk about things, we often feel better, right?

Lily: Yes.

Cara Anthony: Can we keep talking to each other while you grow up, in life, about stuff, even hard stuff?

Lily: Like, doing 100 math facts?

Cara Anthony: Sure. That’s the biggest thing in your life right now, but yes, all of that. We’re just going to keep talking to each other. So can we make a promise?

Lily: Yeah.

Dan Weissmann: It’s such a lovely conversation and you choose to end that second episode with that. Why is that the end of that episode?

Cara Anthony: First of all, I just want to point out that I hope everyone heard like the hesitation in my daughter’s voice when I said, can we make a promise, like building trust is like so important and I think we ended the episode that way, partly because Lily represents the next generation that will come up and, and lead us, but also because it’s just raw and real. And I don’t want my daughter to ‘hush and fix her face,’ but rather to express her emotions, say what’s wrong if something’s wrong. And so we wanted people to feel the authenticity of that moment and to have people understand that it starts young and it starts now. And I’m not going to get it right all of the time, but a professor who’s in that episode. Her name is Aiesha Lee. She’s at Penn State University.

And one of the quotes that she gives us is so profound where she says, and I’m paraphrasing a little here but she says like, each generation has like a piece of the work to do because these issues and problems have compounded over generations, over time. And so, you know, even a small conversation like that and what we’re doing now here, Dan, this is a piece of the work, you know, and if we think about it like that, that really gives me a lot of peace, knowing that, okay, I can’t fix it overnight. I can’t do it all, but I can at least do my part and that’s what we’re trying to do.

Dan Weissmann:Near the end of the documentary, right, there’s — there’s a ceremony, essentially in Sikeston of people filling jars with soil– to the kind of museum and Institution that Bryan Stevenson created in Montgomery, Alabama. It’s called the Legacy Museum, is that right? It connects these hundreds of years of history from enslavement, mass incarceration, including lynching. And there’s an exhibit there, hundreds of jars filled with soil and each one is from a place where lynchings happened. And so here we see people from Sikeston filling jars to send there. As I saw it, you know, in the documentary, the way that scene is presented. You see people smiling. Um, you know, you see people experiencing some kind of satisfaction. Satisfaction is not the right word. I mean what is behind those smiles…

Cara Anthony: It’s redemption. It’s redemption. You know, it’s like, um, early on in the process, I was watching a lot of different, um, TED talks about communities that had similar, you know, racial reckoning experiences. And I ran across one that talked about The three R’s of history, which is, you know, the three R’s are recognize, repair, redeem. You have to recognize what happened, you know, in order to repair it. So you have to say, yes, you are wounded. Now let’s figure out how to fix the wound so that you can have days of redemption and move forward. And that’s really what you saw in that particular scene but that doesn’t mean the work is complete. And there are people that don’t want a marker for Cleo Wright in the city, even today. So let’s not, you know– I just don’t want to paint a picture of perfection or that everything is fine now, because there’s still so much that needs to be done. that’s my biggest thing with this, is that this is a starting point. Um, we’re not at the finish line yet.

Dan Weissmann: Cara, thank you so much.

Cara Anthony: Thank you. [music]

Dan Weissmann: Cara Anthony is Midwest Correspondent for KFF Health News. You can find the documentary Silence in Sikeston on the PBS app, or on YouTube.

Silence in Sikeston, the podcast, is available — wherever you get your podcasts. We’ll have a link wherever you’re listening.

We’ll be back in a few weeks with a story I think you’ll definitely want to hear. Holden Karau has been building a tool that’ll let you use artificial intelligence to write appeals when health insurance denies a claim. Her tool is called Fight Health Insurance, and the slogan is: Make your insurance company cry, too.

That’s next time. Till then, take care of yourself.

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

Adam Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions. Gabrielle Healy is our managing editor for audience.

Lynne Johnson 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 healthcare in America and a core program at KFF, an independent source of health policy research, polling, and journalism.

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

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor. They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

Finally, thank you to everybody who supports this show financially. You can join in any time at arm and a leg show, dot com, slash: support. Thank you so much 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.

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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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In states like Connecticut and Indiana, legislators have passed bills restricting these so-called “facility fees.”

In this episode of “An Arm and a Leg,” host Dan Weissmann takes a close look at Kari’s bill, alongside Christine Monahan, an attorney and assistant research professor focused on facility fees and state efforts to limit them.

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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– 

Kari Greene lives in Portland. She’s got a couple of auto-immune disorders– mostly under control these days. She sees her rheumatologist a couple times a year — just to check in. 

And last year she noticed a charge on top of the $40 copay she was used to. 

$88 for an “observation room fee.” 

She says she called her insurance. 

Kari Greene: And the person I spoke with was like, this seems weird. 

Dan: She says they promised to investigate, but Kari never heard back. Eventually, she paid the bill and moved on with her life. 

After Kari’s appointment at the start of this year, the fee was there again. But instead of $88, now it was $99. Kari was pissed. She still is. 

Kari Greene: I’m like, how? How dare you? it’s such a slap in the face where you’re like, I already paid my copay 

Dan: Now they want a hundred bucks on top of that. For no reason Kari can see. And Kari’s pretty sure it’s not just her. 

Kari Greene: That’s the part that galls me it’s like, there’s this Scrooge McDuck back there going, Oh, we’ve got this doctor who works her little tushy off and she sees, five patients an hour. 

And, we can add this charge on to every single one of these office visits. 

Dan: Kari’s definitely right that this isn’t just her. We haven’t found Scrooge McDuck and his swimming pool full of currency — yet. 

But researchers and advocates have been talking for years about these kinds of extra charges — called “facility fees.” 

They can get tacked onto office visits by hospitals, when the hospital owns the doctor’s office. 

And with hospitals buying more and more doctors’ offices, those researchers say these fees keep popping up more and more often. 

So we asked: Would anybody who had gotten a bill for one please share it with us? Kari was one of a bunch of people who responded. 

And took time to talk with us. 

Teresa: oh, it made me so mad, so mad. 

Anne Gaffney: I mean, it’s a 10 minute appointment for a prescription. Amanda: I don’t understand any of it. 

where did this number come from? 

Dan: We dug a little deeper with Kari’s story, partly because it fit so closely with what we’d been hearing about: A fee that wasn’t there one year, and the next it was. For a brief office visit — Kari thinks maybe ten minutes– in a normal setting. 

Kari Greene: It’s a regular doctor’s office room. it’s got the little bed with the paper on it, you know. And it’s got the like blood pressure cuff thing on the wall, there’s nothing that makes it special, 

Dan: Except, when it comes time to bill, for the fact that a hospital owns it. 

And our first question, of course, was: Can they really freaking DO that?!? How is that even allowed? 

The “how” is long and complicated and honestly boring. But by and large, it’s legal. They can do that. 

Except, as far as we can tell — for the most part — in a few states. Especially Connecticut.

Legislators and policy-makers there have been working on this issue for a decade. And bit by bit, they’ve worked to outlaw charges like the ones on Kari’s bills. 

And other states have started working on following Connecticut’s lead. We talked with someone who’s been tracking those efforts. 

Christine Monahan: My name is Christine Monahan. I’m an assistant research professor at the Center on Health Insurance Reforms, which is part of Georgetown University’s McCourt School of Public Policy. 

Dan: Christine and her colleagues issued a report over the summer looking at efforts to restrict facility fees like these across all fifty states. 

And she has some good news: 

Christine Monahan: there’s bipartisan interest in this issue. We are seeing these reforms bubble up across the states. 

Dan: The less-good news: It could take other states a lot of years to catch up. And they’re hitting opposition every step of the way. 

We’ll have a progress report. But first we’ll go deeper with Kari’s story, which turns out to have a twist. 

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 chosen here is to take one of the most enraging, terrifying, depressing parts of American life, and bring you a show that’s entertaining, empowering, and useful. 

Kari’s in her mid-fifties, works in public health. For a long time, she’d had problems that no doctor ever found a cause for: Joint pain, migraines, fatigue. 

Then in 2020, she got COVID, and things took a turn. Weird sores. She says her fingers swelled up like sausages. 

Kari Greene: when these like Sores were showing up and like I couldn’t move my hands and they were super fat that was at least something that I could be like, see, it’s not just the joint pain. It’s not just the fatigue. It’s not just the migraines. It’s not just the, like, look at my hand. This is not normal. Right. 

Dan: Friends helped her find her rheumatologist. 

Kari Greene: She was able to figure out what was going on. And, she’s, I, I mean, I will get weepy talking about her because she is just, rheumatologists are like detective doctors, you know, they are amazing diagnosticians, they’re incredible listeners 

Dan: After a bunch of listening, a bunch of labs, this doctor got Kari a diagnosis — diagnoses — and some meds that help a lot. So, Kari is pretty devoted to this doctor. 

Kari Greene: Anytime I consider switching, you know, when open enrollment comes around, I’m like, Okay, I see that I could spend a lot less money on a different plan, but there’s no way I’m giving her up. 

Dan: These extra fees aren’t enough to send her away either. But Kari is doing what she can to avoid charges like this with another specialist she sees. 

Kari Greene: My, my neurologist is in the same building and last year he was like, we can switch to telehealth. You don’t have to come in. 

Dan: But Kari says the rheumatology consult is different. More hands-on. 

Kari Greene: Rheumatologists really need to be able to touch your joints and manipulate. To be able to, see, disease progression or even just be able to do, like, diagnostics. 

Dan: So Kari’s back at that office every six months, paying that extra fee. 

She says she’s lucky it’s more of an annoyance than a real financial hardship for her, but when she’s in the waiting room, she worries about the other folks she sees there.

Kari Greene: these are not young, healthy people who are like out in the workforce, like just live in their best lives. 

Dan: After her January visit this year, when the “observation room fee” went up from $88 to $99, Kari called her insurance again, looped in the benefits person from her work. 

The upshot: The insurer didn’t have a problem with the charge. They said the hospital had the right to bill for it. 

Kari Greene: But just because you have the right to do it, does that mean you should be able to do it? 

Dan: And actually, here’s the thing: Maybe the hospital DIDN’T have the right to do it, either. 

Christine Monahan — the Georgetown researcher who’s been tracking efforts to clamp down on these kinds of fees? 

She’s also an attorney — and she’s a bulldog. She helped us really dig into Kari’s bills and insurance paperwork. We waded deep into the alphabet soup. 

Christine Monahan: She has a um, E/M CPT code on her EOB. Hospital’s billing a G 0 4 6 3 

Dan: I’ll spare you more of that. But here’s where Christine patiently led us: Based on written policies from Kari’s insurance company, Christine thinks Kari probably never should have gotten charged for anything beyond that 40 dollar copay. 

Christine Monahan: I think there’s a good argument to kind of question why she should be paying more 

Dan: Mmhmm. Dang. 

Dan: Now, our producer Emily Pisacreta was on the call with Christine too — to help make sure I didn’t get lost.

And then it was time for Emily and me to test how well we’d followed Christine through that strong argument: By summing it up and running it by Kari’s insurance company and the hospital. 

We went back to documents Christine had dug up. 

Emily: This is… 

Dan: This is the, uh, this is the reimbursement policy manual. 

Emily: The reimbursement policy manual. 

Dan: YEP. That one. It’s a section from the insurer’s REIMBURSEMENT POLICY MANUAL– which spells out what they do and don’t pay for. 

Christine had grabbed policy number 0h-Six-one: Clinic Services in the Outpatient Setting. Like Kari’s doctor’s office. 

And it turned out to tell basically the whole story. Emily and I got excited, talking over each other. 

Dan: Now that we’re looking at it. 

Emily: And they’re like not allowed to this. 

Dan: I mean, like I got confused even talking through it with Christine, but this seems crystal clear. They’re like not allowed to do this. 

Emily: Mmhmm. 

Dan: Here’s what it says: 

“For clinic visits and services performed in the hospital outpatient setting, we do not allow split-billing” 

And a couple sentences down that gets spelled out even more clearly: 

“Do not split-bill clinic-based services, billing part of the service as a facility charge, and part of the service as a professional charge”

That sure looks like it means: Don’t double-dip with a professional charge– a bill for the doctor’s service — AND a facility fee. 

We reached out to Kari’s insurance company and the hospital that sent the bills. Asking them: Are we missing something here? 

We haven’t heard back. 

Which leads me to think somebody may owe Kari some kind of refund. Which feels very satisfying to know. But it’s not exactly satisfactory. 

Because as Christine said when we talked with her: This is not the sort of thing a regular person could be expected to run down, on their own time. 

Christine Monahan: Most consumers are not going to know to look up the reimbursement policy. 

Dan: Or how to interpret it. I mean, Emily and I look at this kid of stuff as part of our jobs. We’re not brand new at it. But even with Christine leading us every step of the way, it took us some time to follow it all. 

Christine Monahan: I think it, really just highlights how opaque all of this is and there may well be some insurers that are not paying these facility fees, or at least that say on paper that they are not going to, but it’s a whole mishmash of different policies and they’re not always followed. And the consumer is really left in the dark. 

Dan: Which is why legislators in states from Connecticut to Colorado have started saying: Hey, maybe this shouldn’t be a fight that individual people have to get into. 

Maybe there should be RULES about fees like this. 

Maybe there should be rules against them. 

That’s next. 

This episode of An Arm and a Leg is a co-production of Public Road Productions and KFF Health News. That’s a national newsroom that produces in-depth journalism about health issues. Their reporters do incredible work, and I’m honored to work with them. 

Before we start talking about efforts to regulate facility fees, we wanted to hear the case FOR them. We asked the American Hospital Association to make that case. 

They sent us a statement from Molly Smith, their group vice president for policy, and she recorded it as a voice memo. Here’s the bulk of it: 

Molly Smith: The cost of care delivered in hospitals and health systems and any associated sites of care operated by the hospital takes into account the many unique services that only they provide to their communities. This includes the cost of maintaining standby capacity for traumatic events and delivering 24/7 care to all who come through the emergency department, regardless of ability to pay or insurance status. 

They provide access to critical healthcare services that may not be otherwise available, especially in low income, rural, and other medically underserved communities. Hospital facilities also treat patients who are sicker and have more chronic conditions than non hospital facilities, which requires a greater use of resources. 

In addition, hospital facilities must comply with a much more comprehensive scope of licensing, accreditation, and other regulatory requirements than do other sites of care. Facility fees are one way that hospitals may bill for overhead costs to maintain all of the essential services they provide to their patients and communities 

Dan: Molly Smith also takes a long swipe at insurers, including Medicare, for not paying enough. 

And I think it’s fair to sum this up as: Operating a hospital is expensive. Facility fees are one way we try to get money to meet those expenses. 

Which, according to Christine Monahan from Georgetown, is what hospitals tell state legislators when facility-fee regulations get proposed. 

Christine Monahan: Hospitals will come in and tell horror stories about how devastating it will be to their finances if we were to do even the itsy bitsiest of reforms, and it can be hard for advocates and policy makers to go in and fact check those statements by the hospitals.

An Arm and a Leg Season 12, Episode 4 September 26, 2024 p.9 

Dan: Because they don’t have the data. Hospitals have it, but there’s a lot they’re not required to share. 

Christine Monahan: The hospitals continue to have all of that information kind of in a black box about like exactly how much revenue are they getting, where are the facility fee revenues going, how much are going to profits, how much are going to cost, and if so, what are the costs, 

Dan: That’s a LOT of unknowns. 

Christine Monahan: It can be scary to policymakers when a hospital industry comes in and says, this is going to ruin us and they don’t have the data to come back and say, well, no, it really won’t. Even if they may be very skeptical that that what the hospitals are saying is accurate. 

Dan: Mm. That is super interesting. There’s like this information asymmetry. 

Christine Monahan: Yes. Yeah, we’ve been calling it an information monopoly . 

Dan: Look, here’s just one example: How often are hospitals charging facility fees for visits to doctors offices? Like actual offices that aren’t anywhere near the hospital, but that the hospital now owns? 

Where could you find that out, if you were a state official? Well, a lot of states have databases with all insurance claims that got paid. Maybe you could look at insurance claims that included facility fees. 

But how would you know where a particular appointment happened? The claim has a provider number. But a hospital doesn’t have to use a new provider number for every location, every doctor’s office. 

Christine Monahan: Often they will be using a single identifier number for all their claims, or maybe a single health system might have a handful of identifier numbers. And they’ll put those identifier numbers on the claims forms. And they might use the same identifier for if you’re at the hospital, or if you’re out 20 miles away in a physician’s practice that they’ve recently acquired.

Dan: So to start with, policy-makers may have no way of knowing where these fees are even being charged. 

So when Connecticut started passing laws in 2014, the first ones were really just about information. Requiring hospitals to post signs about them. And commissioning a study. 

The next year, Connecticut passed a much bigger bill. It prohibited a lot of facility fees for regular office visits — what’s called “evaluation and management” services on insurance forms. And required hospitals to make annual reports on facility fees. 

And in a separate law, Connecticut banned facility fees for telehealth. That’s a step Christine says a lot of other states have followed. 

Christine Monahan: I mean, how egregious is it to get a facility charge for a telehealth visit where you did not leave your home? 

Um, that just does not make any sense. And so that’s really easy pickings as far as hospital reforms go for regulated policymakers to look at and say, this, this doesn’t make sense 

Dan: Since then, Connecticut has passed a dozen more laws– requiring new disclosures here, tightening loopholes there. 

And the state still may not have closed them all. We heard from a listener in Connecticut who was trying — and failing — to find a place he could get a stress test that wouldn’t charge him a facility fee. 

But even if more loopholes get closed, there’s a problem. One economist we talked with said: Outlawing fees like this, it’s like squeezing part of a balloon. Other parts of it just get bigger. 

Christine Monahan agreed. 

Christine Monahan: hospitals, particularly those with more market power, are best able to then, you know, shift their revenue somewhere else. If you say you can’t impose a facility fee for XYZ services, okay, we’re going to start imposing facility fees on these other services, or maybe we’re just going to increase rates overall. And so it may not necessarily contain total system costs because of the balloon effect.

Dan: the, if I’m running a hospital, I’m like, well, my costs are this. Like, I’m gonna like, my, my, my, my revenue goal is this. Like, you’re telling me I can’t charge that. What else can I charge? How else am I gonna get that money? 

Christine Monahan: Yeah. 

Dan: And as Christine alluded to in that exchange: not all hospitals are created equal. Some are big and rich, running surpluses — profits — in the hundreds of millions of dollars a year. Others — smaller hospitals, rural hospitals — struggle to keep their doors open. Some do close every year. 

Christine and her colleagues found, the big ones can use their poorer counterparts as political shields. 

Christine Monahan: We spoke with a few hospital executives as part of our research last year. And, you know, one hospital executive we spoke with, he, represents kind of a smaller, less market powerful hospital, and he expressly acknowledged they carry the water for other hospitals in their state before the state legislature. 

Dan: So, when a state like Indiana passed restrictions on facility fees in 2023, the law only applied to the state’s biggest hospitals. 

Indiana’s story illustrates Christine’s point that this isn’t a partisan issue — where Democrats hold majorities in Connecticut, Indiana is solidly Republican. The Employers Forum of Indiana has led the charge there. 

Their story also illustrates Christine’s point that change happens slowly. 

Gloria Sachdev is executive director of the Employers Forum of Indiana. When she started the job in 2015, she went around to meet with employers.. 

Gloria Sachdev: I asked them, what is your biggest pain point? And all of them said, healthcare costs, they’re not sustainable. They’ve been going up, you know, four or five, six, seven, 8 percent every year. 

Dan: The group spent years conducting studies. Among their finidngs: Indiana hospitals charged more than hospitals in other states. And more than independent medical practices that offered some of the same services. Oh, also: Hospitals were buying up those practices, and jacking up prices.

Gloria Sachdev: And nothing was changing about the service. It was just that they owned it now and were able to tack on a hospital facility fee. 

Dan: In 2020, the Employers Forum started lobbying for changes. Restricting facility fees was one of several issues. And it got maybe the most pushback. 

Gloria Sachdev: the Indiana Hospital Association was fairly masterful at, uh, bringing forward Physicians from all across the state, they had school nurses showing up. 

Dan: School nurses who were employed by local hospitals. 

Gloria Sachdev: They said, Oh my gosh, you know, the, we’d have to shut down the school nurse program. 

Dan: The Employers Forum lost that round. Getting a win took three years. And the bill that passed was narrowly tailored. It wouldn’t apply to smaller, financial-strapped hospitals: Just the state’s five largest hospital systems. And it only applied to “off-campus” locations — like a doctors office the hospital just happened to own. 

Gloria Sachdev: So if they’re in a strip mall, you know, 20 miles away. They can’t charge a hospital facility fee. 

Dan: According to this year’s report from Christine Monahan’s team at Georgetown, Indiana is now one of nine states with some restrictions on facility fees. 

Another dozen states have passed other laws, including ones that require hospitals to disclose data. Data that may help advocates and policy-makers chip away at the information monopoly– the one that Christine calls an obstacle to change. 

Christine Monahan: we are making baby steps, um, in a very difficult environment. And so I count that as progress. 

Dan: We’ll have links to Christine Monahan’s reports in our newsletter. You can check to see what steps your state has taken so far. We’ll also link to reports on facility fees from the Public Interest Research group, which has also been pushing for reforms. 

We’ll also highlight some other stories we’re watching right now. I’m telling you: Our newsletter is pretty good. You might want to sign up! You can do that at arm and a leg show dot com, slash, newsletters. 

Thank you for sharing your stories, and your bills, with us for this series. We’ve learned more from you than we’ve been able to share so far. We’ll keep looking for ways to bring that to you. 

We’ll have a new episode for you in a few weeks right here. 

Till then, take care of yourself. 

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

Big thanks to the many experts who talked with us about facility fees, especially Patricia Kelmar of the Public Interest Research Group and medical-bill coding expert Shelley Safian. 

Adam Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions. Gabrielle Healy is our managing editor for audience. Bea Bosco is our consulting director of operations. 

Sarah Ballama, who has been our operations manager since early 2022, just left to take a very cool full-time job in another state. Sarah, we’ll miss you so much! 

Lucky for us, the amazing Lynne Johnson has come aboard to run the operations side for us. Welcome, Lynne! And thanks so much for joining us. 

An Arm and a Leg is produced in partnership with KFF 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. 

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

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor. They allow us to accept tax-exempt donations. You can learn more about INN at INN.org. 

Finally, thank you to everybody who supports this show financially. You can join in any time at arm and a leg show, dot com https://armandalegshow.com/support/. Thank you so much 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.

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This story can be republished for free (details).

What Caitlyn did next is a reminder of why a beloved former guest once said you should “never pay the first bill.” This episode of “An Arm and a Leg” is an extended version of the July installment of the “Bill of the Month” series, created in partnership with NPR.

Credits

Dan: Hey there — 

One morning when she was in eighth grade, Caitlin Mai did what she always did when she woke up. 

Caitlyn Mai: Music has always been a big part of my life. And so I immediately put in my headphones and started putting on music as I was about to get out of bed and get ready. And I noticed my earbud in my right ear wasn’t working. 

Dan: It was obvious, because on this Beatles tune she’d cued up, Eleanor Rigby, the vocals are almost all on the right-hand side, and she couldn’t hear them. 

Caitlyn: I was like, that’s kind of weird. So I switched the earbuds and it worked fine. But then it was, the other one wasn’t working in my right ear. And I was like, what? 

Dan: Yeah, confusing. And then she tried getting out of bed. 

Caitlyn: I was so dizzy. It was my first time experiencing vertigo, and it was so severe, I couldn’t walk across the room without getting severely motion sick. 

Dan: With that vertigo, Caitlin could barely walk at all. She had no sense of balance — that actually relies on a mechanism inside our ears. Later, doctors found she had lost 87 percent of her hearing on the right side. 

Caitlyn: They think I just had some sort of virus that settled in my ear, and it damaged my ear. But I went to bed completely healthy the night before. Woke up, couldn’t hear out of my ear. 

Dan: She had to learn how to walk all over again.

Caitlyn: I have to rely on my eyes. My friends still find it hilarious if I close my eyes, I fall over. 

Dan: That was eighth grade. Caitlyn made it through high school, in Tulsa where she grew up without a lot of accommodations. 

Caitlyn: Cause in middle school, early high school, you don’t want to bring attention to your disability. At least I really didn’t want to at the time. I was super anxious about that. 

Dan: Catilyn’s 27 now, she works as a legal assistant in Oklahoma City. Her husband’s a lawyer. And for the longest time, she couldn’t access a tool that helps restore hearing for lots of people: Cochlear implants — small devices that stimulate nerves inside the ear. 

The FDA didn’t approve them for just one ear until a couple of years ago. Last year, Caitlin got her insurance to approve one for her. She had surgery in December to insert the implant. And in January, an audiologist attached an external component to switch on Caitlin’s right-side hearing. 

Caitlyn: She said, okay, at some point, you’re gonna start hearing some beeps, just say yes when you can hear them. And my husband said my face just, out of nowhere, lit up, and I go, yes! It was streaming directly to my cochlear implant. And I definitely started tearing up. 

Dan: Then, two weeks later, Caitlin got an alert from the hospital on her phone. 

Caitlyn: And I open it up, and I immediately started having a panic attack. 

Dan: It was a bill for a hundred and thirty-nine thousand dollars. The full amount for Caitlin’s surgery. 

Which, given that Caitlyn had gotten her insurance company’s OK for the procedure in advance, was a pretty big surprise. NPR featured Caitlyn’s story recently for a series they do with our pals at KFF Health News. 

NPR HOST: Time now for the latest installment in our bill of the month series, where we dissect and explain confusing or outrageous medical bills.

Dan: I interviewed Caitlyn for that story. And we’re bringing you an expanded version here because Caitlin’s situation — well, it was a good story. And it made me curious about a couple things. 

It also reminded me of some good advice we’ve heard here before — and it reminded me of an important colleague and teacher. And the bottom line to Caitlyn’s story? Stand up for yourself. Don’t cave. Make the next call. 

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. 

To get her insurance company’s approval, Caitlyn had already spent a lot of time — and a lot of money — in the months before surgery. For instance … 

Caitlyn: To prove to insurance that a hearing aid wouldn’t work had to be fitted for a hearing aid and then do a couple hours of testing to prove, yep, it doesn’t help. 

Dan: There were reviews with audiologists, with her surgeon, and an MRI to make sure there wasn’t too much scar tissue for an implant to take. 

Caitlyn: That took a long time to get scheduled, get insurance to approve, pay for, then get back for another appointment. I counted up at one point — it’s like around eight or ten appointments that I had before the final, okay, let’s schedule surgery. 

Dan: And — you caught that, right? Where she mentioned she had to get her insurance to approve paying for the MRI? Every one of these preliminary steps cost money, and she had to wrangle with her insurance to get their OK. 

But of course even with her insurance saying yes, there were still copays, and deductibles, and what’s called co-insurance — where you pay a percentage of any bill from a hospital. 

Which meant Caitlyn was chipping away at what’s called her out-of-pocket maximum: The most she could be on the hook for in a given calendar year. The surgery got scheduled for December — the same calendar year as all those tests — and she checked to see what she might have to pay. 

Caitlyn: I looked at my little portal for insurance, I’m showing what’s left on my out-of-pocket max for the year is around 2,000, give or take, 200 dollars. 

Dan: She called the insurance company to confirm that estimate. And then she cranked up her due diligence. 

Caitlyn: I called the hospital, and I asked for the names of the anesthesiologist, the radiologist. I asked for all of the details of who is possibly going to be on my case. And then I turned around and I called insurance and I said, I want to make sure all of these physicians are going to be in network on this date. 

Dan: Caitlyn had done her homework. Probably more than a lot of us would have thought to do. I asked her: How’d you get so diligent? And first, like a lot of folks I’ve talked with, she said: Having a major health issue as a kid — losing her hearing — gave her an early heads-up to watch out. 

Caitlyn: A little bit was, uh, experience of my mom dealing with insurance battles with me growing up. I remember her running into issues with that. 

Can: And she’s got some experts in her life now. Her brother and her sister in law work in health care. One of her best friends is a healthcare lawyer and had some tips. 

Caitlyn: But honestly, I think a lot of it is I have anxiety, and so I was just really paranoid. 

Dan: The surgery went great. And a few weeks later, Caitlyn was in the audiologist’s office, getting that external component attached, and hearing on her right side for the first time in 15 years. Caitlyn says it all took some getting used to. 

Caitlyn: I remember those, like, first few days especially, it wasn’t really like I was hearing full sounds. It was kind of just different pitches. I wasn’t hearing the words and everything, it was just the breakdown of the different pitches. And they also were just so much higher than they should be.

Dan: So interesting. Radiolab may have already done this story — [but] I’m just like, let’s find out what that’s about. 

Caitlyn: I love Radiolab. 

Dan: Me too! Anyway, two weeks after she starts getting used to her new hearing situation, Caitlyn gets that alert on her phone. 

Caitlyn: And it tells me I have a new invoice. And I was like, oh, awesome! I’m not stressed at all, I did my due diligence. I know it’s gonna be expensive, but affordable. 

Dan: Except, right: It’s a hundred and thirty-nine thousand dollars! Six figures. The full amount for her surgery. You might remember, Caitlyn said she had a panic attack. That was literal: Heart palpitations, hyperventilating. 

It took her 20 or 30 minutes to get calm enough to start making calls. And she says her insurance told her they hadn’t paid because the hospital had neglected to send something important. 

Caitlyn: The itemized bill. Which has all the codes and everything, 

Dan: Caitlyn says she immediately asked the hospital, in writing to send her insurance the itemized bill, and she says sent a follow-up a week later. But her phone kept pinging with alerts about owing the hospital a hundred and thirty-nine thousand dollars. 

Caitlyn: The app so conveniently told me that I could sign up for monthly payments of 11,000 dollars a month, which is just so absurd. 

Dan: After two weeks, she asked her insurance: Do you have that itemized bill yet? They didn’t. So she called the hospital again. 

Caitlyn: The girl I spoke with said she was putting in a request to have it faxed to my insurance and that would take two to three weeks. And I said, hold on, it takes you two to three weeks to fax a document?

Dan: Answer: Apparently yes? And Caitlyn says even three weeks later, her insurance company still hadn’t gotten that itemized bill the hospital promised to fax. 

And all this time Caitlyn was still getting notices from the hospital billing department. And the latest one said, “past due.” She tried something new: So she called the hospital and demanded they send the itemized bill directly to her, immediately. Which they did. 

Caitlyn: So I turned around and faxed it to my insurance. 

Dan: Yeah but, this did not end things, not yet. Caitlyn says she got more notices labeled past due. She fought her way to a direct conversation with a supervisor. 

Caitlyn: They kept saying,‘well, a supervisor’s not available right now.’ I said, No, you’re finding a supervisor. I don’t care if they’re cutting their lunch short. I’m talking to a supervisor right now. I don’t care if I sound like a Karen. It’s been a long, long year already. 

Dan: Eventually, Caitlyn got a supervisor on the line and got the supervisor to get permission from a manager to stop sending her bills while the hospital waited for insurance to pay. 

By this time, it was late March, almost two months after that first bill gave Caitlyn that panic attack. Also by this time, Caitlyn had sent her bill to the folks at NPR and KFF Health News for that Bill of the Month feature they do. 

Caitlyn: I was like, I just need to vent. And so I submitted it just to vent it out. Never expecting anyone to reach out. 

Dan: But they did. And on April 9th, Caitlyn got a call from a regional Patient Service Center manager. 

Caitlyn: And she was super nice and tried to be really apologetic, but never actually accepting any blame. Or outright saying,‘we’re so sorry.’ Just said, ‘I’m sorry for your frustration, that sounds awful.’ 

Dan: She DID tell Caitlyn that the hospital had received payment from her insurance. And that Caitlyn could expect a final bill within a week. And that instead of a hundred thirty nine thousand, it was gonna be one thousand, nine hundred eighty-two dollars and twenty-five cents. 

Caitlyn: I said,‘yep, that actually matches what my insurance said,’ and she said,‘oh, you know what was left on your out-of-pocket, most people don’t,’ and I said,‘I’m very well versed in every dollar sign at this point in this entire case.’ 

Dan: Caitlyn says she got that bill four days later and paid it immediately. 

Caitlyn: And I saved the receipt of that, I have saved everything. It feels like it’s resolved, but there’s part of me that’s still waiting for the other shoe to drop 

Dan: So, Caitlyn’s story brings up a LOT. Of course, I loved the way she kept fighting, and ultimately took control of the situation. And I hated how she got trapped between these two big entities and how much time and stress the whole thing cost her. 

Because, you know, the hospital could’ve resolved this so quickly by just sending that itemized bill to Caitlyn’s insurance company. 

Caitlyn: And the hospital did not do that. They just turned around and billed me. Which was a stupid idea, since the insurance company is more likely to have the money. Not the legal assistant in Oklahoma. 

Dan: Caitlyn’s story raised a few questions, and brought back a lot of themes we’ve touched on before. We dug in also found some new tips, and some memories I want to share. That’s coming right up. 

This episode of An Arm and a Leg is a co-production of Public Road Productions and KFF Health News, a nonprofit newsroom covering healthcare in America. Their senior contributing editor, Elisabeth Rosenthal, reported Caitlyn’s story for KFF and NPR. She wrote a book about U.S. healthcare. It’s called “An American Sickness,” and it was an inspiration for this show. 

One question we ask sometimes on this show when we see a bill that’s so wildly ridiculous and unfair is: Can they freaking DO that?!? Like, is that even legal?

Like in this instance, can they just keep billing you while they’re apparently not even playing ball with your insurance? And: Do we have any legal weapons to fight back with? 

We asked a bunch of legal experts, and they pretty much all said: Yes, they probably can do that, and no, we probably don’t have any easy legal weapons we can fight with. But then I talked with Berneta Haynes. She’s a senior attorney with the National Consumer Law Center. 

And she had some practical thoughts that are super-worth sharing. She used to work for a nonprofit called Georgia Watch — that’s a state-level consumer protection group. They operated a hotline people could call for help. 

Berneta Haynes: Consumers and patients would call us with all kinds of hospital billing issues and medical debt issues. And we’ve had these kinds of weird questions where really, there wasn’t a particular lever at the legal level to actually help them. But if they feel like they’re experiencing what could be considered potentially an unfair business practice, it is totally within their right to file a complaint within their state A. G.’s office. 

Dan: The A.G. The state attorney general. Whoever’s doing you wrong, you can file a complaint. 

Berneta: Whether or not there’s any real hook that your AG could use to hold them accountable is always a question that’s up in the air. But even just the act of filing a complaint is very likely to get that entity, that company, to behave correctly. 

Dan: Basically, go up the chain. Whether to a government watchdog, or in the organization that’s bugging you. We’ve heard this before, but I loved the specifics that Berneta Haynes shared with me about her own experiences. 

Berneta: I will tell you, one of the mechanisms my husband and I have had to utilize repeatedly, not in a hospital context, but in various other service contexts is to reach out or threaten to reach out to the CEO or president. And it gets results every time. It gets results every time! 

Dan: Oh, and here’s the pro tip.

Berneta: My husband has repeatedly, when he’s had to do it, set up a LinkedIn premium account just to find the CEO and message them directly. 

Dan: Ooh, that’s good! 

Berneta: That has been the way we’ve gotten resolution on all kinds of issues related to insurance companies not wanting to do right by us. And so forth. 

Dan: So that was fun. Now, I do want to talk a little bit about what Caitlyn did, and what allowed her to do it. Caitlyn figures she made at least a dozen phone calls. And she says she’s lucky — privileged — to have a job where she could do that. Here’s the first thing she says she did once she got over that panic attack when the bill arrived. 

Caitlyn: I just went to my boss’s office and I said, I’m going to have to make some phone calls. There’s a problem with my hospital bill. She’s like, don’t worry about it. Do what you need to. 

Dan: And she had people in her corner, like the friend who’s a healthcare lawyer. And legal advice wasn’t the big thing that friend gave Caitlyn. 

Caitlyn: Most of the time I was just venting to her, and she was like,‘you need to keep pushing, like, keep going at them. Don’t let them win. Don’t roll over. Just keep pushing. They should be paying.’ 

Dan: And at that point, I told Caitlyn, she and her story were really reminding me of someone. 

Dan: There’s a reporter named Marshall Allen. He worked for ProPublica for a long time. He wrote on healthcare, and he wrote on stuff like this. And eventually he wrote a book, giving advice to people. And the title of the book was, Never Pay the First Bill. 

Caitlyn: Oh! 

Dan: And I told Caitlyn, Marshall was on my mind at the time because when Caitlyn and I talked in May, Marshall had just died, like less than two weeks before. And he was young — 52. He had three kids.

Caitlyn: So sad. 

Dan: Super, super, super sad. 

Dan: And of course the title of Marshall’s book — Never Pay the First Bill — that’s exactly how Caitlyn played things. She wasn’t going to think about paying anything until she got her questions answered. And it is worth remembering. 

When we were talking with legal experts, one thing a few of them said was: If you pay something that insurance was supposed to cover, and then insurance comes through, you’re supposed to get a refund. But who wants to chase that? 

Yeah. Don’t pay that first bill until you’ve made sure this is money you really owe. So, this seems like a good time to memorialize Marshall Allen a little bit. He liked to compare the healthcare system to a schoolyard bully. Here’s what he told me when he was on this show in 2021 when his book had just come out. 

Marshall Allen: What I think we need to do is stand up to the bully. We need to stop being afraid. We need to stop thinking someone else is going to stick up for us. And I wrote the book to equip and empower people to stand up to the bullies. 

And I think it’s tremendously empowering, but it’s hard, and standing up to a bully takes incredible courage. It takes fortitude. It takes persistence. You might get beat up in the process. There’s no guarantee of victory. It’s risky, right? But if we don’t try, we don’t have a chance. 

Dan: Marshall was a Christian minister before he became a reporter. He wrote a thoughtful essay about how his work as an investigative reporter fit with his faith. The gist was: The Bible is pretty clear that cheating people and exploiting them is wrong. 

And to me, it seems like there was an element of ministry– not just evangelism — to what he did after his book came out. Here’s what he told me in 2021: 

Marshall: I’ve started taking calls, and I’m responding to emails that I get from people and I’m saying,‘call me, let’s talk it through, let me help you with this. Let’s work through this together.’ And now I’m helping people work through their bills, work through these situations where they’re being cheated. It’s super satisfying and gratifying, so it’s my new hobby. 

Dan: He kept at it. He left ProPublica and took a job with the Office of the Inspector General at the federal department of Health and Human Services. And he published a newsletter — it was free, but he encouraged people to pay if they could, and he used the money to hire medical-bill advocates to help people with especially tricky cases. 

And Marshall was funny. I want to close out this episode with a story he told me the first time we talked, in 2019. It’s kind of an origin story. 

Marshall: So when I was 16 years old, um, I worked for this dinner theater in Golden, Colorado, where I grew up. One day I show up for work, and they’ve closed down the business. They owed me like three weeks of pay. 

The guy had closed the place without paying us and said,‘there’s no money. We shut down the business. We can’t afford to pay you. You’re out of luck.’ Well, we were all pretty angry about that. We were really angry because they had opened a sister dinner theater under the same company umbrella across town. And we all knew that. And we were like, well, if you can afford to keep your other place open, you can afford to pay us. And they said,‘sorry, kids, you’re out of luck.’ 

Dan: Marshall goes home, tells his mom what’s going on. 

Marshall: And my mom tells me you should sue him. I’m like, mom, what do you mean? I can barely drive. How can I sue the guy? She goes,‘you should take him to small claims court.’ So lo and behold, I go down, I fill out the paperwork. 

It’s a few paragraphs. It’s easy to fill out the paperwork in small claims court. I fill out the paperwork and turn in like 10 bucks at the time or whatever it costs. It’s not that expensive to file one of these cases. And I get a notice in the mail like six weeks later. And I have a court date, and I’m like geared up for this big Perry Mason moment. 

Dan: Perry Mason was a lawyer on this super old TV show — courtroom drama. But this wasn’t a courtroom.

Marshall: It’s more like a conference room and there’s some administrative hearing judge in there. And lo and behold, the owner of the company and his attorney had to show up in court there with me. 

And I thought we’d have a big argument all the administrative judge did is he read my few paragraphs on the little thing I’d written up and he looks over at the owner and he goes,‘is what this kid saying true?’And the owner’s like, ‘well, yeah.’ And the judge is like,‘give this kid his money.’ And I was like, This is amazing. You know what? Maybe the court system does actually work every now and then maybe every now and then the little guy can win. 

Dan: Marshall and I both stayed interested in how people can use the legal system to get our rights. I learned a lot from Marshall, and like a lot of people, I just loved his spirit. Marshall Allen, thank you. And here’s the end of my conversation with Caitlyn. 

Dan: Marshall Allen would have been extremely proud of you. 

Caitlyn: Yeah. 

Dan: Caitlyn has the final word here. 

Caitlyn: I got to the point where I was like, it’s my fight. I’ve got gasoline in the fire. I’m, I’m going for it. 

Dan: We’ll be back with a new episode in a few weeks. Till then, take care of yourself. 

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

KFF senior contributing editor Elisabeth Rosenthal reported Caitlyn’s story for KFF and NPR. She was editor in chief there when she invited me to collaborate with KFF to make this show’s second season, and we’ve been colleagues ever since. I’ve never felt so lucky or so thankful. 

Special thanks to Christopher Robertson at Boston University’s School of Law, Wendy Epstein of the College of Law at DePaul University, Sabrina Corlette at Georgetown University’s Center on Health Insurance Reforms, and Elisabeth Benjamin from the Community Service Society of New York for pitching in with legal expertise here. 

Adam Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions. Gabrielle Healy is our managing editor for audience. Bea Bosco is our consulting director of operations. Sarah Ballama is our operations manager. 

An Arm and a Leg is produced in partnership with KFF 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. 

Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show. And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor. They allow us to accept tax-exempt donations. You can learn more about INN at INN.org. Finally, thank you to everybody who supports this show financially. You can join in any time at https://armandalegshow.com/support/. Thank you so much 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 its newsletters. You can also follow the show on Facebook and the social platform X. 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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But these fees have grown and become more common in recent years. And as hospitals buy up outpatient facilities, patients are starting to get charged facility fees for routine tests, procedures, and visits to the doctor’s office.

In this episode of “An Arm and a Leg,” host Dan Weissmann speaks with Georgann Boatright, a retired speech pathologist from Oxford, Mississippi, who was told by her local hospital that she needed to pay an $8,000 “operating room fee” for a routine test. She was determined not to get overcharged, even if it meant driving hours out of state to get the test someplace cheaper.

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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 of months ago, we asked you to help us report on a type of fee that seems to be sneaking onto more and more medical bills. They’re often called “facility fees.” It’s like a cover charge just for walking in the door. And these kinds of fees are familiar to a lot of folks from places like emergency rooms, which do have a LOT of specialized equipment and staff in the facility behind that door. That’s basically the case for a cover charge: Once you get in the door, there’s a lot of stuff there. But in some cases, with facility fees, the door is just the entrance to a doctor’s office. Because facility fees– they’re often charged by hospitals. And hospitals own a lot of doctors’ offices these days. And once they take over, there’s no law that says they can’t just call that doctor’s office part of their facility and start charging. 

We asked what you’d been seeing. A bunch of you sent us stories, and copies of your bills, and your insurance statements. And when we called to follow up, you took our calls. You had A LOT to say. 

Teresa: Oh, it made me so mad, so mad. Anne: I mean, it’s a 10-minute appointment for a prescription. 

Amanda: I don’t understand any of it. Where did this number come from? 

Dan: We learned a bunch. Especially from those of you who are not new to this kind of thing. 

Francesca: It was a running joke with my husband and myself that like, okay, it’s time for my weekly, one-to-two hour phone call with Cigna. 

Dan: People who’ve been contending with the health care system for a while, dealing with chronic illnesses, or going to the doctor for monitoring, or having some kind of ongoing treatment. 

Anne: I see her once a year. I’ve seen her once a year for 18 years at the time. And then they started charging the facility fee. 

Dan: And I’ve always said here, we have a lot to learn from each other. And what we learned here is a lot more than is gonna fit in one episode. So we’re gonna start here with one story that really stood out. Partly because it involved the biggest dollar amount we saw: An eight-thousand dollar facility fee. And partly because the person we heard from … didn’t end up paying it. And partly because of what it took for her to avoid paying it. She had what I might call a lifetime of preparation– including lessons I think a lot of us can learn from. And she has the kind of grit that not all of us have. But I’m hoping that some of it might rub off. So let’s meet her. 

Georgann Boatright: My name is Georgann Boatright, and I am a retired speech pathologist. 

Dan: Georgann lives in Oxford, Mississippi. She works for the university there, Ole Miss, coordinating special events. 

Georgann Boatright: It’s lots of fun. Never a dull moment. Everything from weddings to conferences. 

Dan: The day we talked, she had made coffee for 500 people. Before eight am. And here’s how she describes her response to that eight-thousand dollar charge. 

Georgann Boatright: I was like, that’s insane. And of course, being the obnoxious human being that I can be at times, and a little bit pushy, you know; sometimes you got to do that. I’ve always been that advocate for everybody else, so sometimes I have to advocate for me.

Dan: Georgann pushed back– we will talk about how far she had to go. And among other things, we’re talking about actual miles she had to travel. It was not easy. But it was worth it. Let’s take a ride. 

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 chosen here is to take one of the most enraging, terrifying, depressing parts of American life, and bring you a show that’s entertaining, empowering, and useful. 

Georgann Boatright grew up in Oxford, went to Ole Miss– the University of Mississippi, right in town. And after a decade and change in places like Huntsville, Arkansas, and towns near Springfield, Missouri, she moved back to Oxford about 15 years ago. 

Georgann Boatright: My mom came ill. And so I moved back to Mississippi to be with her for the end. 

Dan: Georgann herself had a health scare not long after– it turned out to be a non-cancerous tumor. Her local doctors couldn’t figure out the problem, but she found good treatment at West Cancer Center in Memphis, about an hour and a half away. And then, in 2022, an actual breast cancer diagnosis. She went back to the West Cancer Center in Memphis for treatment. And while she was being treated for breast cancer, her doctors found a thyroid problem. 

Georgann Boatright: But they were kind of like, okay, we’ll put that on a back burner for right now because we got to take care of this first. 

Dan: So, they did! And you know, that took months, of course. Once she was done– and no evidence of cancer for a few months!– they picked up the thyroid thread. Her endocrinologist in town suggested what’s called a needle biopsy: no incision, just pulling a sample with basically a syringe, guided by ultrasound. And Georgann was plenty familiar with the procedure because she’d had two of them for her breast cancer.

Georgann Boatright: Well, of course, having just done all this other stuff, I was kind of like, oh, okay, just another biopsy. No big deal. 

Dan: Her endocrinologist suggested the local hospital, Baptist Memorial, North Mississippi. And started getting her scheduled there. 

Georgann Boatright: I was just sitting in my office doing my thing and, you know, answering emails, trying to get people to sign up and do a wedding. So, they called me and said, “Hey, you know, we need a thousand dollars up front.” And I’m like, why? I’ve already met my deductible. Da, da, da. You know, and they’re like, Oh, well, this is just this is just your copay.” 

Dan: None of this sounded right to Georgann, based on her experience. 

Georgann Boatright: I’d had two biopsies done in the past year, just in the process of doing the breast stuff. And I was like, that’s not normal. 

Dan: At the cancer center in Memphis, a thousand dollars was in the ballpark for the whole procedure, like before insurance paid anything. And Georgann’s share, after insurance, was like a fraction of that. 

Georgann Boatright: And I went, excuse me, because of course I was expecting, you know, under a hundred bucks, you know. And they acted very offended that I questioned. She was like, “Well, this is standard.” And I was like, “But I’m confused,” and, you know, and the more questions, she got kind of defensive. 

Dan: Georgann says she quickly developed a little sympathy for the woman on the other side of the call. 

Georgann Boatright: I was like, this person has no clue. This is their job. They’re given this information. They’re given my phone number. They’re told to collect a thousand dollars from me. You know, I mean, it’s not her fault. 

Dan: So, Georgann quickly made a new plan. First step: get a line-item version of that estimate, in writing. And next: find somebody else to talk with. 

Georgann Boatright: I was like, “Well, hey, how about you just do me a printout and I’ll come by the hospital and pick that up. If you’ll just leave it with somebody near the desk …” 

Dan: … Then Georgann figured she can actually see what these charges are for and you know, maybe talk to somebody who’ll know a little more. She went that same day. 

Georgann Boatright: I wanted to get the biopsy done. I wanted to find out what was going on. You know, once you’ve had cancer, it kind of, that C word just does not sit well with your brain. You kind of, it starts eating at you and you’re like, I really want to know. 

Dan: And she wanted to know why the hospital wanted a thousand dollars from her. She got that printout– the line item estimate. It showed thirteen thousand dollars in charges. And the single biggest charge– more than half of the whole bill– eight thousand dollars– was for an “operating room” charge. It wasn’t labeled “facility fee,” but that’s exactly what it was. Georgann sent us this line-item estimate. We showed it to a medical-bill coding expert; she confirmed– this is a facility fee. And I’ll just mention again: Of all the people who sent us bills with facility fees on them, this was the highest by a LOT. Alot a lot. And seeing this “operating room” charge really set off alarm bells for Georgann. Because Georgann had just had TWO needle biopsies. And they sure as heck had not taken place in an operating room. 

Georgann Boatright: It’s a needle aspiration. It is ultrasound-guided. So it’s done in radiology. This is not in an operating room. 

Dan: When she got to Baptist, Georgann did get to talk in person with a billing specialist. It wasn’t a satisfying heart-to-heart, but it gave Georgann the clarity she needed. 

Georgann Boatright: At a certain point in the conversation, I was just kind of like, “You do realize that there is not an operating room involved in this?” And she said, “Well, of course, there is.” I was like, “No, there really isn’t.” “Oh, well, that’s just our standard procedure.” And so she stuck with that. And so I was like, okay, well, since you’re going to just stick with this, I’m going to just let this go. Because if I can’t seem to get you to understand that I’m not going to pay you 8,000 dollars for an operating room that I’m not going to go in, we’re not going to get anywhere. 

Dan: And Georgann knew she had an alternative: She could go back to the cancer center in Memphis. It was a bit of a drive, but she trusted them to do good work and not to overbill her. So that’s what she did. Her out of pocket cost was eighty dollars. We asked Baptist all about Georgann’s experience, and what was behind this eight-thousand dollar charge. Especially since medical and surgical supplies were listed as separate line items. 

A hospital spokesperson wrote back: “The price a patient sees on the hospital bill also reflects all the people who care for them and keep the hospital operating, not just the services provided, such as nurses and caregivers at the bedside, pharmacists, lab technicians, food service staff, environmental service professionals and security personnel who, among many others, keep the hospital running 24/7. We believe we charge fair and reasonable prices for our expert care.” 

Of course, we also asked Baptist why there would be an operating room charge at all, when the patient didn’t expect to be seen in an operating room. The spokesperson wrote back: “I’m not sure why there was a discrepancy. But, in general, the pricing information we share with patients is only an estimate, and the final bill can vary. We encourage patients to contact us with any questions.” OK, then. And I just want to say: I think– well, I KNOW– that I’ve undersold what it took for Georgann to make that decision. I mean, yeah, we’ve seen, Georgann showed a lot of initiative, and savvy, and decisiveness, and a certain amount of grace in navigating a couple of conversations with her local hospital’s billing department. But we haven’t seen EXACTLY what made her so prepared for those conversations, and to make her decision so quickly. And if we’re gonna learn from Georgann’s example, we’ve gotta look at that. That’s coming right up. 

This episode of An Arm and a Leg is a co-production of Public Road Productions and KFF Health News. Public Road is the organization I founded to make this show. The name comes from Walt Whitman; I’ll tell you about it sometime. KFF Health News is a nonprofit newsroom covering healthcare in America. Their journalists do amazing work– win all kinds of awards, every year. I’m honored to work with them. So, what allowed Georgann Boatright to navigate those conversations with her hospital billing department so skillfully? And to quickly decide to drive to another city for care? Well, let’s start with her old job as a speech pathologist. You might remember, when she did that job, she was living in places like Huntsville, Arkansas. Or, as Georgann describes it … 

Georgann Boatright: … Absolutely the middle of nowhere, Arkansas. 

Dan: It’s not like a speech therapist is gonna have a ton of clients in town. Georgann worked for an agency that sent her all over the place. 

Georgann Boatright: I was driving about three- to five-hundred miles a day when I retired. 

Dan: A day! 

Georgann Boatright: Yeah, well, they’re spread a little thin in that area. 

Dan: Yeah. Yeah. Right. How fast were you driving? Like, how many hours are we talking about being on the road? 

Georgann Boatright: I was usually on the road 12 to 14 hours a day. 

Dan: Oh my god. 

Georgann Boatright: Yeah, but that’s because, you know, I was bouncing in and out everywhere from Liberty, Missouri, which is outside of Kansas City, all the way down into Arkansas. 

Dan: So, we start to get the idea that driving an hour and a half from Oxford to Memphis is, you know, not such a big deal to Georgann. But there’s this other thing. Which is what Georgann spent all those hours in her car actually doing. Because she was not listening to podcasts, I can tell you that. She was dealing with health insurance. On behalf of her colleagues and her patients. 

Georgann Boatright: I was the person in our company that would do all the appeals. I got really good at getting Medicare, Medicaid, Blue Cross Blue Shield– all the insurances to pay. 

Dan: Georgann did all this by phone, with somebody back at the home office transcribing for her. It was part of her gig– because she had all that time in the car. The agency she worked with also employed physical therapists and occupational therapists, sending them out to nursing homes. And those colleagues would have multiple appointments a day at the same spot. 

Georgann Boatright: I would only have like, maybe one or two patients during the course of the day, and then I would end up doing paperwork the rest of the day or helping someone else do paperwork. 

Dan: Because not only did Georgann have time with all those hours in the car. She had something else: language skills. 

Georgann Boatright: The crew that I worked with, they were mostly from the Philippines, and we partied very well. And I ate a lot of good food, and I gained weight. And no fault of their own, English wasn’t their first language. So that was part of my job was to make sure that the language barrier wasn’t the problem for the physical and occupational therapists getting paid. 

Dan: So for five years, she spent most of her long workday dealing with insurance. 

Georgann Boatright: That was what I did, and I was really, really good at it. You know, when you get on a first name basis with the reps in your area, you know that you’re a thorn in their side. When they would see my name, they’d be like, “We might as well just go ahead and pay this one because she’s going to find a way to get it through.” 

Dan: So when Georgann ended up talking with those folks at her local hospital’s billing office– the folks who were trying to tell her that an eight-thousand-dollar operating-room fee was just standard– she had a pretty good idea of what their jobs were: Just getting the hospital’s money. 

Georgann Boatright: I get that. And I understand that, but you know, you have to understand when you’re calling people and asking them for money that you have to know why they’re paying you money and whether or not you can justify how much they’re paying you. 

Dan: So, just to recap: When Georgann was in those conversations with the local hospital billing department, she had years and years of experience in medical billing. She was, by her account, really really good at it. It doesn’t seem like a stretch to guess that when she talked with these folks at the local hospital’s billing department, she knew a lot more about medical billing than they did. And she knew that this hospital wasn’t her only option. She had just done cancer treatment at West Cancer Center in Memphis. She trusted them, and they hadn’t overbilled her. And she wasn’t afraid of a road trip. That 300-mile, 500-mile-a-day job was a while ago, but just in the last year she’d made the trek to Memphis for cancer treatments, several times. In fact, the story of the wrap-up to that treatment gave me real appreciation for Georgann Boatright’s brand of cheerful grit and determination. For more than a year, Georgann had been planning a big family reunion for Christmas: Her kids, their kids, gathered from across the country, to a lodge near her husband’s mom. 

Georgann Boatright: I wanted his mom who has been getting on in age to get a chance to see the great grands and this kind of stuff. 

Dan: Georgann had made the reservation for the lodge months before her cancer diagnosis. And then, the last day of her radiation treatment got scheduled for December 23. The reunion was scheduled to start that very night. In Branson, Missouri– a five-hour drive from Memphis. 

Georgann Boatright: And I was like, I am not canceling this. Everybody’s like, “Mom, you don’t have to do this,” blah, blah, blah. I was like, “No, I’m going to be healthy and done with this treatment. By the time of this reservation.” I said, “I don’t care what happens!” 

Dan: The procedure that last day was to remove a device that had been delivering targeted radiation doses. And when the day came, an ice storm knocked out the power at West Cancer Center. The medical staff suggested, you know, rescheduling. 

Georgann Boatright: They’re like, “Well, do you want to come … No! I want this done. I am not coming back tomorrow. 

Dan: Wow. 

Georgann Boatright: I am going to make this reservation. I’m going to spend the night in a very nice place in Branson, Missouri and play in the snow. 

Dan: It wasn’t gonna be easy. 

Georgann Boatright: There was no power. There was no lights. There was only the little emergency generator lights that come on in a hospital. 

Dan: But they made it work. 

Georgann Boatright: I had it taken out that day. By the flashlights of the nurses 

Dan: The flashlights on the nurses phones! Georgann says she slept in the car while her husband drove them to Branson that day. Mission accomplished. 

Georgann Boatright: It was a great trip, and everybody was there, and it was wonderful to kind of celebrate at the end of that. I was done with radiation. I was like, I’m going to get well now and just keep kicking cancer’s butt. Because I was like, I am not giving up. 

Dan: I said right at the top: This story is epic, right? And I said that whatever’s powering Georgann Boatright, I hope just a little bit of it can rub off on us– on me. So, when Georgann talked with the folks in the billing department at her local hospital, she knew just what she was capable of. Also, it’s worth mentioning, she knew she had some other things that not everybody has: She knew she had excellent insurance because she’d seen it at work when she got the bills for her breast cancer treatment. And she knew she had someone to drive her to Memphis and back. Uber? That would’ve cost a LOT. Actually, Georgann says she priced it recently for her job. 

Georgann Boatright: It’s 145 dollars, and I was like, you got to be kidding me! 

Dan: I believe I could fly to Memphis from Chicago for 145 dollars one way. 

Georgann Boatright: I could get a flight to Southwest for 120. Believe me, I do it. That’s my thing. If I do it during the week, I can go from here to Midway. Yeah. 

Dan: Wait, why is flying to Chicago’s Midway airport Georgann’s thing? Well, the answer actually relates to one more thing Georgann had going for her in this whole scenario. Something– someone– I left out before. 

Melissa McChesney: My name is Melissa McShesney. I live in Chicago, Illinois. 

Dan: Melissa is Georgann’s daughter. She is the mom of two of Georgann’s grandkids. Melissa’s brother– dad to three more grandkids– he also lives in Chicago. Those kids and grandkids are, all of them, the reason Georgann has that airfare at the tip of her tongue. But it’s Melissa who plays a role in this story. Because Melissa works for CMS, the Centers for Medicare and Medicaid Services– the federal agency that oversees Medicaid and Medicare. So health insurance is her job. I mean, at least government-funded insurance. 

Melissa McChesney: I only know enough to be dangerous on the private side. But, you know, I have colleagues that know a lot more. 

Dan: Melissa and her mom– two health-insurance experts– can back each other up. 

Melissa McChesney: It’s always great to have another set of eyes. So, sometimes I call her, sometimes she calls me. 

Dan: This time– after those conversations with the hospital billing department– it was Georgann who did the dialing. 

Melissa McChesney: She called me to say, “This doesn’t make any sense. Why is this the most expensive procedure I’ve seen in a year when I just went through breast cancer treatment? At least from the out-of-pocket cost. And I quite frankly didn’t fully know either. 

Dan: So some poking around led Melissa to a story from the Bill of the Month series our pals at KFF Health News do with NPR. 

NPRHost: For our September bill of the month, we’re taking a close look at facility charges … 

Dan: And this story was a pretty exact match with Georgann’s situation: An operating room charge for a needle biopsy. NPR’s website even had a PDF of the original bill, with the billing codes.  

Melissa McChesney: Which was very helpful, actually, because I was able to see the fee that the article was focused on. And I was like, “This is the exact same thing, mom.” 

Dan: And that bit of context? It confirmed for Georgann that she could trust her initial impression: That this “operating room” fee seemed out of whack. And that she could do better. So she had that biopsy at West Cancer Center in Memphis before the week was out. And good news: She’s OK! The biopsy came back benign. Her local endocrinologist has been monitoring her bloodwork. 

Georgann Boatright: And so right at the moment, my thyroid levels are all staying normal. So they’re not concerned that it’s throwing off everything unless it becomes like a huge thing that grows in my neck. 

Dan: And she gets an occasional ultrasound at a local clinic. No needle, no hospital, no facility fees– and keeping an eye on the bills. 

Georgann Boatright: They have been very reasonable. That’s why I was like, okay, well I’ll continue doing this as long as y’all don’t screw me over anymore. 

Dan: One last thing I should tell you about Georgann and how she handled that eight thousand dollar charge the hospital had wanted: This is something she did after her daughter Melissa sent her that NPR story– you know, the one that helped her decide she was definitely going to Memphis. Melissa’s got this part of the story. 

Melissa McChesney: She sent the NPR article and her estimate to her endocrinologist and said, “Just so you know, this is what happens when you refer individuals to this hospital. And you know, it would cost them a lot of money.” I was so proud of her for doing that. it just speaks to my mom and trying to be a person who’s not just worried about her own experience, but the experience of others in her community.

 Dan: I’m telling you, we all want some of Georgann Boatright to rub off on us.An ArmandaLeg Season 12, Episode 1 July, 11, 2024 p.14 You sent us SO MANYstories about facility fees. I hope you can see why we wanted to bring you this one first, but we are not done. We talked with a bunch of you– and we talked with some experts who gave us some insights … and some lessons. 

Shelley Safian: Sometimes you talk to the physician, sometimes you talk to the facility, sometimes you got to go to the president and say, “You know what? This is not right.” 

Dan: And we talked to experts who gave us a look at what policy makers all over the country are doing– or trying to do– about these fees. Because they’re definitely paying attention. Because a lot of people are recognizing: You should not need to be Georgann Boatright to find a way around fees like this. Most of us aren’t. 

Christine Monahan: There’s bipartisan interest in this issue. We are seeing these reforms bubble up across the states. 

Dan: So over the next couple of months, we’ll be sharing a LOT more of what you’ve been helping us learn. Meanwhile, because you’ve been so incredibly helpful here, I’m going to come back to you soon asking for more help on a different story. That’s coming next time. Till then, take care of yourself. 

This episode of An Arm and a Leg was produced by Emily Pisacreta and Claire Davenport, with help from me, Dan Weissmann, and edited by Ellen Weiss. Adam Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions. Gabrielle Healy is our managing editor for audience. Gabe Bullard is our engagement editor. Bea Bosco is our consulting director of operations. Sarah Ballama is our operations manager. 

An Arm and a Leg is produced in partnership with KFF 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. Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show. 

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor. They allow us to accept tax-exempt donations. You can learn more about INN at INN.org. 

Finally, thank you to everybody who supports this show financially. You can join in any time at https://armandalegshow.com/support/. Thanks so much 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 its newsletters. You can also follow the show on Facebook and the social platform X. 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).