She has developed a strategy for addressing high insurance premiums — one that’s based on giving patients reliable information about how much they, and their insurer, would have to pay for care. The system is already working in Massachusetts. Could it be a model for the rest of the country?

Ho explains to Dan Weissmann, host of “An Arm and a Leg,” why she thinks this approach could help curb high prices and how listeners can help prove it by sharing their medical bills.

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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–

Vivian Ho is a health economist at Rice University and the Baylor College of Medicine in Houston. And since early 2024, she’s been giving talks at… HR conferences. Which is not a typical gig for an economist.

Vivian Ho: Um, yes. Economists don’t usually do that. We love to go talk at our own conferences.

Dan: But she’s been eager to spread a pretty big message.

Vivian Ho: There’s a potential to save workers, um, you know, and employees a lot of money.

Dan: And a few weeks ago, she sent me an email asking for help with what she’s trying to do: 

She’s wants folks to send her hospital bills for a study she thinks could be part of saving people a lot of moneys. She wondered if I’d encourage people to pitch in.

And honestly, I wanted to say yes before I even really knew anything specific about the study.

I should say: Vivian Ho has been a donor to this show. That’s actually how I met her and learned about her work. And became kind of a fan. 

Over the last few years, she’s been digging up and publishing evidence we need, to push back against the way health care keeps getting more and more expensive.

This is stuff a lot of us suspected, to say the least — stuff reporters have documented examples of — but she’s demonstrated they’re actual trends, not one-offs. 

For instance: When nonprofit hospitals make big profits — and they often do – they call them surpluses– they don’t generally use that money to help patients, by giving more charity care to reduce people’s bills. 

In one study, she compared hospital finances in the early 2010s and near the end of the decade. As the decade was ending, she found nonprofit hospitals were a LOT more profitable than they’d been before. 

And they’d gotten a lot richer, with like seventy percent more cash in the bank than they’d had earlier.  

But they were actually giving out less charity care.  

 She told me she ran that down after she got help understanding a big set of data that helped her see what hospitals actually do with their money– and started to poke around in it.

Vivian Ho: I say, well, I’m just gonna go have a look at, you know, one of the local hospitals and see what it says and then I pull it up and I go, oh wow.

Dan: She took a peek at one hospital’s “fund balance” — that’s non-profit speak for an institution’s savings, like for a rainy day. 

Vivian Ho: The fund balance for one of the hospitals across the street from Rice University is five and a half billion dollars. And so, you know, then it’s like, well, I need to take a closer look at this.

Dan: Here’s a couple things she found: That fund balance — the “rainy day fund” — was enough to run the hospital for more than two years. And it runs a healthy profit margin. 

And her study showed when she zoomed out: This is not a one-off. Among hospitals that do well, it’s the norm.

And this kind of data — this kind of EVIDENCE of how things work, of who benefits, and how much, from the totally unfair and unaffordable prices we’re all up against — it’s ammunition. 

Vivian Ho is looking for people to share their hospital bills with her, in order to build up her arsenal of information . 

She’s got a strategy in mind for how to deploy that information to save a lot of people a ton of money. It’s interesting.

And: I have no idea if this specific strategy will pay off.

But here’s what I do think: ?If we’re going to fight against the greed and exploitation that make our health care system so unhealthy — so deadly — we’re gonna need all the fighting power we can get.

So, I’ve sent Vivian Ho a hospital bill. And at the end of this episode I’ll encourage you to do the same. 

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.

Dan: Vivian Ho has been a health economist for like 40 years. And you could say she has mixed feelings.

Vivian Ho: Health economists, they work on so many different things and they are all important and interesting. But I do think the issue of the cost of healthcare and the cost of health insurance premiums is the biggest problem putting a burden on the average American citizen. And I don’t think as a profession that we spend enough time on that basic issue. I feel kind of – well, it does make me quite sad because here I am, I’ve worked in this career for this entire time, and things aren’t getting better. They’re actually getting much worse.

Dan: And that, she says, is why she does things like go to HR conferences these days. She’s got the motivation and she’s got the freedom to do it. 

Vivian Ho: So I’m super lucky. I’ve got tenure at Rice and you know, I’m a member of National Academy of Medicine. I’ve sort of achieved everything that I wanted to achieve, and now it’s, it’s all about, well, what can we do?

Dan: She’s decided to go after what she now sees as the biggest problem. Not the ONLY problem, but the biggest driver in prices that only seem to go up more every year.

Hospital systems are consolidating — gobbling each other up. So they get more bargaining power with insurers. They get higher prices without necessarily delivering more value.

Which isn’t what economists always expect. Bigger can mean better, more efficient. That’s what Vivian Ho used to expect.

Vivian Ho: I started this whole research agenda sort of 10-15 years ago, and I thought bigger was going to be better. I thought because of economies of scale and that if you allowed hospitals to acquire physician practices, there would be less duplication of services, you’d save money. But then the problem is there’s no mechanism that forces a provider to pass any savings onto the consumer. So there may be economies of scale, it’s just you and I as consumers aren’t able to enjoy any of those benefits.

Dan: That’s something we’ve talked about on this show. Like a lot. But what Vivian Ho has been able to demonstrate is: At this point, the average profit margins for hospitals — including “non-profit” hospitals — are actually higher than average profit margins for insurance companies.

Vivian Ho: There’s plenty of rural hospitals and smaller hospitals that lose money, but net, when you average on just how much profits the consolidated systems are making and you add them up all over the country, it’s much higher than what you get for the total profits of insurers.

Dan: Which isn’t to say that insurance companies don’t have a BIG role to play in our suffering. 

Vivian Ho: Insurers are, in many ways, not doing what they should be for customers. Certainly the show demonstrates that in many ways and that they are earning high profits. I’ve just looked at the data and concluded that the hospitals are earning much higher profits than the insurers are, and that’s where we’ve gotta focus our attention. 

Dan: I mean, there’s so much to unpack there, right? One is, wow, the hospitals are earning higher profits than insurance companies, and the insurance companies, by and large, are publicly traded entities that answer to shareholders. And the majority of hospitals in the United States are, as far as the IRS is concerned not-for-profit entities.

Vivian Ho: Exactly. We’ve been doing research lately that unfortunately shows that our not-for-profit hospitals behave a lot like for-profit companies.

Dan: So, okay, how do we get at that? 

Vivian Ho: Oh, uh, how do we change the behavior of what’s going on? 

Dan: Yeah.

Vivian Ho: Yeah. So…

Dan: Here’s Vivian Ho’s game plan. It’s complicated, and I’m not in a position to say, “this’ll totally work” — but there’s a lot that’s worth knowing here.

Especially this:

When Vivian Ho talks to business executives or HR managers, she brings out another set of data. And this is data that’s only become available in the last few years. 

Insurers now have to show what they pay hospitals. Not the sticker price, the negotiated price.

So, Vivian Ho’s talk includes a slide showing some details from three Houston hospitals. Blue Cross pays one of them about 22 thousand dollars for spinal fusion surgery. Another one gets 66 thousand — three times as much.. 

And the slide shows: That math is similar for other procedures. 

Vivian Ho: Employers didn’t realize how different the prices could be at their local hospitals. They thought, you know, anyone would think, oh, the prices couldn’t be that different. And now that some of the data is starting to make it out there, it’s becoming clear you really could save a lot of money.

Dan: I mean, you MAYBE could — if you could give your workers a good reason to go to the hospital that charges less.

Vivian Ho has a model for how that could work. It’s — based in part on a story I call Once Upon a Time in Massachusetts. 

That’s next.

This episode of An Arm and a Leg is produced in partnership with KFF Health News. They’re a nonprofit newsroom covering health issues in America. Their reporters do amazing work. They win all kinds of awards every year. We’re honored to work with them. 

So, here’s our story — Once Upon a Time in Massachusetts — straight from the story’s author.

Elena Prager: I am Elena Prager. I’m an assistant professor of economics at the Simon Business School at the University of Rochester.

Dan: And while doing her dissertation, she came across a very unusual set of data. 

Elena Prager: I was like, wow, goldmine.

Dan: Here’s the story: Massachusetts has an agency that basically runs employee health benefits for all state employees, and a lot of local-government workers too.

And once upon a time — starting in 2010– they tried something unusual. 

Elena Prager: Possibly because they were lucky, possibly because they were smart, they designed their health insurance plans – at least when it came to hospital care – based everything on copays. And what that means is that you are given a dollar number. Let’s say $250 or $500 and like that’s it. That’s the number. If you go to hospital A, you pay 250, you go to hospital B, you pay 500. The end.

Dan: Which is totally different from how we’re used to looking at hospitals, right? I mean, regular insurance plans typically say, “You’ll pay like 10 percent, or 20 percent or 30 percent of whatever the total bill turns out to be.” 

Elena Prager: And the patient is left scratching their head being like, well, how do I know what the total bill is gonna be? Even if the hospital tells me something. Like, what if something goes wrong with the anesthesia? They have to call in an extra specialist. There’s a complication. More stuff gets done. Like it’s very, very hard to, for a patient and even really a provider, to predict in advance what’s gonna be done to them and therefore what the price is going to be.

Dan: So there’s no way for me to take price into account if I need to go to the hospital.

But Once Upon a Time in Massachusetts, there was. It was a co-pay. Whatever insurance plan you were on, it worked the same way:

Go to hospital A — where prices are generally higher — your copay might be five hundred dollars.

Go to hospital B — that charges the insurance plan less for stuff — you’d pay two-fifty.

And Elena Prager found the data that showed what happened next.

Long story short, she found that over three years, patients started using lower-priced hospitals more often. Patients saved money, and so did the health plan. 

And actually, Massachusetts still runs its health plans this way, but– 

 Vivian Ho doesn’t think other employers can just get their insurance companies to adopt this same model. 

VIVIAN HO: It’s actually a fair amount of work.

DAN:  Work for the insurance company. Doing the math to figure out which tier is which, and what the copays would be.

Vivian Ho: and of course it gets the hospitals really upset.

Dan:  The folks in Massachusetts had a ton of leverage that most employers don’t have:  

Elena Prager says they represented a huge chunk of the insurance market like a twelfth of it. Enough business that it was worth insurance companies’ while to put in the work.

But now, Vivian Ho has her eye on a couple of new services that are promising to do something similar.

One is actually a subsidiary of everybody’s favorite insurance company: United Healthcare. They make an app called Surest.

Surest Ad: It’s easy to shop for a vacation rental or your next flight, but when it comes to something like healthcare, not so easy. That’s why Surest is a health plan, designed to be simple with clear upfront costs.

Dan: Here’s how Vivian Ho describes the mechanics of this kind of app.

Vivian Ho: Doctor tells you you need to go get an MRI, you punch an MRI, the app knows where you live, and it says, here’s a list of providers where you can go get an MRI. And then if you go to this particular place, there’s no copay and there’s actually no deductible, and then if you go to this MRI place, well, you know, there’s gonna be a $25 copay or a $50 copay. Yeah. Isn’t that kind of mind blowing?

Dan: I tell her: That sounds like I would want that if I trusted that the place that costs my employer less is, you know, gonna take good care of me.

Vivian Ho: Right. Well that’s why I’m trying to get funding to do an analysis to look at the spending and quality implications of using one of these apps.

Dan: That is: Do people using these apps end up choosing lower-cost providers? AND: Do they get good care when they do?

Vivian Ho wants to study that. But first she needs to study something else. 

Vivian Ho: All of these apps and price shopping applications, they all depend on having the correct data. Now, the insurers are required to disclose this information by federal rules. It is slowly coming out. It’s not all there yet, but no one’s actually looked to see whether it’s accurate.

Dan: Oh.

Vivian Ho: So there’s been a lot of focus on, is the price there or is it not there, but not is it the price that the patient is actually getting billed.

Dan: And this is why Vivian Ho wants our hospital bills. 

Because: Whether or not one particular strategy is gonna pan out, the data itself contains ammunition. One hospital gets paid twice as much as the ones across the street? 

I mean, that’s information I want out in the open, and getting put to use. 

But that information can  only be useful if we know the data is accurate. And right now, there’s no way to know. 

Insurers are publishing big data sets, but how  do we *know* somebody at the insurance company didn’t just go to Chat GPT and say, “Make me a giant spreadsheet with these fields on it?”

Vivian Ho says if she has enough ACTUAL bills — a thousand would be good, three thousand would be great — she can check. 

Actually, even better: She wants your itemized bill and, if she can get it, the paperwork you get from your insurance company about what they paid. The thing that says “This is not a bill.” It’s an “explanation of benefits” — or EOB for short.

And, she recognizes, this isn’t a TINY ask.

Vivian Ho: I realize it’s time consuming. It does, you know, because you gotta sit down. It’s like, what’s my password and log in, and then you’ve gotta, you know, find one of these EOBs.

Dan: Oh, and you’ve gotta cover up all your personally identifying information.

Vivian Ho: We don’t wanna see your your name and address and so, you know, it takes time to you, you can sort of print these out and use a Sharpie and cross them out.

Dan: It does sound like a huge drag, but I’m here to tell you: I did it. And it took me maybe five minutes.

I don’t know how Vivian Ho’s specific strategy will play out, and honestly, neither does she.

Vivian Ho: You know, I am going at this at sort of like many different angles.

Dan: Yeah.

Vivian Ho: So just trying to raise people’s awareness of there are huge price differences. This is, this is what it takes to address the issue. 

Dan: If you’ve gotten a hospital bill in the last year or so, and you’ve got five minutes — maybe set a note on your calendar for when you DO have five minutes? — I’d love it if you gave this a shot. 

Grab a sharpie, fire up your printer, dig up your login. Print out a bill and an EOB, scratch out your identifying information, take a picture on your phone — wow, this is sounding long, but honestly, it took me five minutes — so do those things, and send the images to pricecheck@rice.edu. 

Vivian Ho’s got researchers standing by.

Coming up on this show: We’re gonna take some time as the year ends, to look at some things that DIDN’T suck in 2025. 

Which basically means: Places where state governments stepped in to protect us from ripoff prices. Which, it turns out, happened! 

News archive 1: Oregonians burdened by medical bills may soon get a break on their credit scores.

News archive 2: New law aimed at protecting Maine consumers from the impacts of medical debt goes into effect.

News archive 3: Tonight Indiana governor Mike Braun signs 10 health care-related bills into law.

Dan: Happened enough that it’ll take more than just one episode to give you a good sample.

That’s next time on An Arm and a Leg.

Till then, take care of yourself. 

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

An Arm and a Leg is 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 arm and a leg show, dot com, slash: support.

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

For more from the team at “An Arm and a Leg,” subscribe to its weekly newsletter, First Aid Kit. 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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In this mini-episode, host Dan Weissmann talks with Sanford about how handing out charity care information on tiny cards snowballed into an ever-growing list of resources to erase medical debt. They discuss the inspiration behind his project, the role “An Arm and a Leg” listeners played in building it, and how others can contribute. 

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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. So here’s a story — a project — that’s given me more encouragement than anything I can think of lately. It’s driven by you– by listeners to this show.

One of my big dreams for An Arm and a Leg, from almost the beginning, has been to connect people, to help folks learn to help each other. 

And I think I’m seeing the beginnings of a win. 

It started with one listener, trying to do what he could for people right around him. He asked us for advice, we asked folks who get our First Aid Kit newsletter to pitch in. 

And now, with that help, our original listener has started creating a tool I think can ultimately help a LOT of people help each other. 

It seems like the start of a virtuous cycle. And you can help keep it going, and growing.

OK, here’s the story — so far:   

Thomas Sanford goes to medical school in Brooklyn. He says he’s listened to this show for years, but some of the things we talk about here got more vivid for him last fall, as he started his third year.

Thomas Sanford: …where I go out of the classroom and I start spending my days in the hospital interacting with patients and and appreciating that for especially folks in my area — which is one of the poorest parts of Brooklyn– that can be a financial death sentence. It will ruin you in debt that you cannot get out of. And I listened to your episode about Dollar For, the nonprofit that helps people apply for charity care. 

Dan: We’ve talked about Dollar For a lot over the last few years. Their founder, Jared Walker, has helped a lot of people, including me, understand how powerful hospital charity care can be. 

A few months ago, Jared’s small organization hit a big milestone: 

Eliminating more than 100 million dollars in hospital bills, over just a few years.

Jared Walker: And we have been able to do that without charging a single dollar to patients.

Dan: That’s Jared, in a video he posted over the summer to mark the occasion.

Jared Walker: We’re a nonprofit. We help people eliminate hospital bills, mostly by enforcing hospital financial assistance policies,. These programs reduce or eliminate hospital bills for people within certain income requirements. The problem is, is they don’t tell you. So we do.

Dan: Now, working in a hospital himself, Thomas Sanford decided to help spread the word.

He wrote to the folks at Dollar For, and they sent him a PDF for a “touch card” — it’s like the size of a business card. 

It says, “Struggling with hospital bills? Most hospitals offer bill forgiveness programs. On average, a family of four, earning less than 100 thousand dollars a year will qualify. Dollar For can help – for free.”

And then, there’s a web address in big type, and a QR code to scan — and on the back of the card, the whole thing in Spanish.

Thomas Sanford: And I just went and printed out a thousand of them, started handing ’em out to residents and giving them to patients.

Dan: Handing them out to other residents, so they could pass cards to their own patients. 

Thomas says he also left boxes of cards in the break room, so residents could grab as many as they wanted. And then he went to other local hospitals to distribute the cards in bulk.

Thomas Sanford: A lot of little hospitals or community clinics that have like little like business card holders, on the counter in the waiting room, and I just bring a stack and just dump them in.

Dan: And all of this is already extremely cool. And then, Thomas did something else: He wrote to us — to tell us about what he was doing, and to ask for help.

Because over the course of months,as he’d been passing out these cards, Thomas had found: Charity care didn’t necessarily cover everybody’s needs — like paying for prescription drugs. 

Thomas Sanford: And just very frankly, I was busy doing the whole medicine thing, trying to take care of people, and I wish I had the time to sit with them and, you know, search for what would help them specifically, and I just didn’t. So I was looking for, really hoping for, very selfishly, a resource where I could just say, here’s your one-stop shop. It’ll almost certainly cover what you need. I hope this helps.

Dan: He wrote to us, to ask if we knew of anything good. And honestly we didn’t.

So we asked you for help. In our First Aid Kit newsletter, we told Thomas’s story, we added a link to that PDF from Dollar For — because that seemed worth passing around — and we did two more things:

First, we made our own first draft — basically, an annotated list of the resources we would put on a one-page handout.

And second, we asked: Help! What are we missing here? Including: Has anybody actually already made a version of this?

And: You wrote back! 

As it turned out, a couple of you had worked on some great online projects. One was from the nonprofit PIRG — another group I’ve learned a ton from over the years. And the other was actually created by the federal government. 

And, they were great! We wrote about them in First Aid Kit, with links. Other folks had tipped us off to resources that hadn’t been on our original lists — we added those..

And THOMAS took all of that and ran with it. Meaning: He started printing up a rough draft to hand out.

Thomas Sanford: I keep a little stack of them in my backpack, as it’s become somewhat complete and vaguely presentable, and at times I’ve just be like, hold on, leave, come back and be like, here you go.

Dan: And he says: It worked. He told me about this especially dramatic example.

Thomas Sanford: I was in the emergency department and someone come in having a heart attack — very serious. This could kill you. And their only concern when they got there is, what is this going to cost me? And it’s a difficult time to be having that conversation, but being able to say, look, here’s a crummy first draft of something I’ve been working on. I hope this gives you a little relief, but please, right now, let me focus on what’s a little more important, which is keeping you alive 

Dan: Recently Thomas wrote to us AGAIN, to say: Here’s the vaguely-presentable version I’ve been handing out. Can I get more help making it better?

We went back to you — published Thomas’s draft in First Aid Kit, asked if anybody could pitch in, created a sign-up form.

And you’ve been pitching in! Thomas says he’s added more resources, and he’s gotten help making things more presentable.

Thomas Sanford: Just little type things about, you know, me not having to use a period correctly. Big things like maybe you name this document a little more correctly.

Call it help with your medical expenses.

Dan: He’s just shared the most recent version with us, and he says he could still use more help. 

Thomas Sanford: If you know how to copy edit, and you can take my terrible descriptions and make them great. If you know graphic design and can make my, very basic, PDF into something that’s a little more presentable, that would be amazing. Also, if you want to make a version of this, you customize for your own hospitals. instead of a link for dollar four, put in a link to your hospital’s charity care policy. 

Dan: This is actually one of the coolest things. Thomas is using what’s called a “Creative Commons” license. That basically means anybody can take it, make copies of it, make variations on it. 

Thomas Sanford: You can make your own version of it. You don’t need my permission. You can do whatever you want with it. The only thing you have to do is share it under the same license and share it freely

Dan: And give credit to the original creator, so people know where it started. But Thomas wants people to make it their own.

Thomas Sanford: I think that that’s really the ideal: when people start taking it, just make their own version, put it out there and it sort of just evolves on its own, becomes the best thing it can be.

Dan: So, I hope you can see why I’m so excited about this project. I think it’s got incredible potential.  I’m inviting you to pitch in, however you want, and however you can. 

?And at Thomas’s suggestion: We’re posting a PDF of the current version. Print it out, make copies, tell us how you’re using them. 

We’re also posting a google doc that ANYONE can comment on. 

And we’re posting that sign-up form again, so you can volunteer to pitch in. Designers, editors, experts — translators.

And especially: if anyone has a talent for organizing groups of volunteers on a project like this, PLEASE GET IN TOUCH. That would be truly amazing. 

You’ll find these links wherever you’re listening 

And the place where we’re really gonna keep digging in on this project is where it started — in our First Aid Kit newsletter. I’d love for you to sign up. The place for that is www dot arm and a leg show dot com, slash, first aid kit.

That’s arm and a leg show dot com, slash, first aid kit.

This has been a little mini-episode of An Arm and a Leg– a show about why health care costs so freaking much and what we can maybe do about it:  Together– right?

We’ll be back with a full-length episode 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 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. 

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.

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

For more from the team at “An Arm and a Leg,” subscribe to its weekly newsletter, First Aid Kit. 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 search is off to a rocky start. Pisacreta gives listeners a sobering look at how the high price of health insurance plans could change her life and those of millions of others looking for Affordable Care Act plans, as premiums, on average, are projected to increase by more than they have in recent years.

Joined by “An Arm and a Leg” host Dan Weissmann and KFF Health News senior correspondent Julie Appleby, Pisacreta examines how recent budget cuts by the Trump administration for navigators — the people charged with helping individuals, families, and businesses sign up for ACA plans — could make it harder to find the right plan and to pinpoint what people can expect in November when open enrollment kicks off. 

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–

Over the summer, our pals at KFF Health News published a story with the headline: “Insurers and customers brace for double whammy to Obamacare premiums.”

Basically– whammy number one — insurers are planning to raise premiums for 2026 —

And whammy number two: federal subsidies for Obamacare policies are scheduled to get a lot less generous. 

Together, these whammies mean millions of people will be looking at paying a LOT more every month — like hundreds of dollars more. 

Folks are going to need as much advance warning as possible, to figure out how to prepare for a hit like that.

Meaning: This is our kind of story. 

And this one hits a little close to home. Because one of those folks is An Arm and a Leg’s senior producer, Emily Pisacreta.

Emily: Yeah, it’s a wild time. I’ve never had to do this before. Cuz I’ve always had health insurance through work. I’ve totally shaped my life around that because I have diabetes, and without health insurance, I can’t afford what I need.

Dan: But that health insurance has never come from An Arm and a Leg. When Emily started working here as an intern, she was the first person besides me to work more than a few hours a week. We didn’t have an employee health plan because we didn’t have employees.

And we’re still so tiny, so tiny. Apart from summer interns, there’s still only ever been one other person working more than a few hours a week besides the two of us. I’m still the only full-time person, and we still don’t have an employee health plan.

Emily: And until recently, that worked for me– I had another part-time job, and it had health benefits.

Except my contract with that job just ended. 

So for the first time, like more than 20 million other people, I’m looking at open enrollment. And I gotta say, it’s one hell of a year to do that. 

Dan: You’re a double-whammy case study. 

And to get a broader perspective, the two of us talked with Julie Appleby, the reporter who wrote that “double-whammy” story, and since then you’ve continued to do more homework. 

Emily: It’s been pretty intense!  

Dan: For real. And I’m a little bit of a case study too:

Suddenly I’m finding out what our country’s “system” — where health insurance gets tied to jobs — looks like … from the employer side. It’s a whole new adventure. 

We don’t know exactly what we’re going to do. Honestly, I don’t think anybody does.

But we’ve learned a ton. About what we’re up against — along with millions of other people — and our options.

And by tackling this right now — six weeks before open enrollment starts — I hope we can help a lot of other people start planning early with solid information. Let’s go.

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

So, we started by checking in with the person whose reporting first got us looking at this story.

Julie Appleby: It’s recording. It looks like it says 10, 11,

Dan in interview: perfect.

Julie Appleby: I have notes and I’ll try not to rattle the papers. 

Emily in interview: I mean, if we have a reporter on tape rattling papers, I feel like that’s probably okay.

Julie Appleby: Okay. That’s a plan, man.

Emily in interview: Yeah. Why don’t we start out, could you just like, tell us your name and what you do and where you work?

Julie Appleby: So this is Julie Appleby. I’m senior correspondent at KFF Health News.

Emily in interview: What sort of stuff do you cover?

Julie Appleby:  I cover healthcare policy, but that’s a broad term. So everything from cost to, the Affordable Care Act, to what’s going on with Medicare, all kinds of different things involving health care programs and insurance.

Emily in interview: So we were really excited to talk with you, because we wanted to cover, you know, all the changes to the marketplace plans, that you’ve been writing about. And, it just so happens that I need to enroll in a marketplace plan.

Julie Appleby: So let’s give you kind of the rundown. There’s like, there’s kind of like two things going on here. One of them is that just premiums are going up as they do every year. Although this year it’s bigger than it’s been since 2018. So the median increase nationwide, and this is according to some data research by KFF, is about 18%. So that’s a big jump, right? 

Emily in interview: Yeah. Yeah. In your reporting you called it a double whammy. Rates are going up, enhanced subsidies are probably going away. 

Julie Appleby: Right. That’s the second half of the double whammy.

Dan: OK, breaking in here– gonna do this a couple of times for Obamacare vocabulary. Emily just mentioned an important term, went by kinda fast: enhanced subsidies. Obamacare has always included subsidies for most people — that’s part of the “Affordable” part of Affordable Care Act. But for lots of people, Obamacare policies still were… pretty expensive!

So, in 2021 — like, as part of a COVID recovery package — Congress added extra subsidies for Obamacare policies: Enhanced subsidies. 

Julie Appleby: Basically, they made the coverage more generous on both ends of the income spectrum. In fact, I think I was looking at some statistics this morning and something like, 80% of people who have coverage right now have a plan that’s $10 a month or less.

Dan: These are folks with lower incomes — where paying sixty or eighty dollars a month is a big bite. With “enhanced” subsidies, that became ten dollars — or even zero.

But people with higher incomes also got help. Before the enhanced subsidies, people with incomes above a certain level didn’t get ANY subsidy. People called it an “income cliff.”

For the last four years these enhanced subsidies, kind of erased that cliff. If your income was higher, you just paid a percentage of your income. Enhanced subsidies picked up the rest.

But the enhanced subsidies weren’t permanent. They’ll expire at the end of this year, unless Congress extends them. Otherwise… 

Julie Appleby: people who make more than the four times the federal poverty level will not qualify for any help with their premiums under the Affordable Care Act. There will be that cliff.

Emily in interview: Right, right. 

Dan: And it turns out Emily is basically standing on that cliff. She shows Julie the numbers.

Emily: We found this calculator from KFF that attempts to show the changes in premiums if the subsidies expire. And maybe I’ll just share my screen and we can look at – we can look at what I’m looking at.

Okay, you guys see KFF? Maybe just reload and I can enter some Emily figures in here. So, they ask you about where you live and your yearly household income. 

Dan in interview: what’s the amount that you’ve entered as income?

Emily in interview: I have entered $63,000. And it says, without enhanced subsidies, you will likely lose financial help. Because my income is 418% of the federal poverty level.

Dan: Oy. a little more Obamacare vocabulary. First: Federal poverty level. Four times that level is where you fall off the income cliff, no subsidies. 400 percent. And the calculator – which we should say, is a year out-of-date, so the numbers aren’t precise, but they give us an idea– that calculator says Emily’s at 418.

And next:  Obamacare plans come in different “levels,” like Olympic medals: Bronze, Silver, Gold… Bronze plans are the cheapest, and cover the least. 

If Emily got a subsidy, the calculator says a silver plan would be like 400-and some dollars a month, but it says Emily wouldn’t GET a subsidy, so… 

Emily in interview: It would be about $880 a month for a silver plan, or $675 a month for a bronze plan. So for me, that is stressful to read. 

Julie Appleby: That’s a lot of money. 880 bucks a month. So you’re in the situation where you don’t get any, subsidies because your income is over that amount. But I played around with one of these calculators too when I wrote a story recently. And I also plugged in somebody, let’s say who’s earnings are kind of at the lower end of the income scale, say just over 150% of the federal poverty level. So they’re still gonna pay more. They’re, it’s gonna go from paying sort of a national average of about $2 a month to 72 bucks a month, or $864 a year. And remember, this is somebody who’s making 23,000 a year. So $864 is a lot of money. 

Dan in interview: Emily, can you put that calculator back up on the screen for us?

Emily in interview: Sure can.

Dan in interview: The scary calculator. I mean, what would happen if your income were just a little bit lower? If you just shave $3,000 from your income, what does it look 

Emily in interview: So maybe like 60? 

Julie Appleby: I bet you could even shave a little bit less. Why didn’t you make it 62?

 (Sfx: Buzzer) 

Dan: How about 61? What does 61 do for us?

Emily in interview: Can I get a 61 

(SFX: Buzzer) 

 Dan: how about $60,500?

 (SFX: Buzzer) 

Dan in interview: I feel like this is like an auction reverse.

Julie Appleby: in reverse.

Emily in interview: I know this is like the auction from hell

Dan in interview: Yeah, we’re, we’re lowering your income. So let’s keep going. $60,200,

 (SFX: Ding!) 

Dan in interview: That is it. Holy crap it’s a giant cliff. It’s a $5,000 cliff

Dan: Breaking in one last time:  Five thousand dollars is how much money Emily might save on Obamacare premiums if her income stays below that 400 percent line.  Put another way: It’s how much more she’d have to pay if she steps over that cliff.

Dan in interview: Julie, what does that look like to you, seeing that?

Julie Appleby: I think this also, this illustrates a lot of things. I mean, people are gonna have to keep in mind that cliff for next year if these tax credits aren’t extended. This is a projection, this is what you think you’re going to earn next year. So that’s one thing that to keep in mind, okay? And something could happen. Emily could, I don’t know, maybe she wins the lottery or she goes to the casino and wins a bunch of money and that puts her over. 

Emily in interview: Or offers me, you know, a freelance job that’s really interesting. It doesn’t pay that much, but just puts me over, you know? 

Dan in interview: You have to say, I’m sorry, that freelance job is gonna cost me more than $5,000 to accept.

Dan: So, Emily: listening back to that conversation now. What are you feeling?

Emily: I mean, I was trying to stay calm but internally I was freaking out. As Gen Z likes to say, I was crashing out.

Dan: It was really emotional. We both needed time to cool off, just to put this story together.

Emily: Yeah, this situation is stressful. I don’t know for sure how much money I’m even going to make next year. And it feels kind of weird to put all this out here. I don’t know how any of this sounds to other people. Because maybe it sounds like 400% of the federal level is a lot of money. And in some parts of the country it definitely is. But I live in New York City. So my income doesn’t go that far. And that $880 bucks a month we were talking about? That’s actually a big hit. 

Dan: Yeah and — not to pile on, but: the data behind the calculator where we got that number, 880 — that’s last year’s data.  So it doesn’t include the big premium increases that Julie was writing about. The actual amount you’d  be paying every month would be bigger. And you looked up the deductible: more than four thousand dollars. 

Emily: Right, which I won’t have lying around at the beginning of next year either. Yeah so honestly, all of it still makes me want to scream. 

Dan: Yeah, and you’re a case study for a LOT of people. Julie read us a really sobering number, where one consulting group estimated that with this double-whammy Obamacare enrollment could drop by like half or more. 

And, in fact, one of the reasons insurers say they’re raising prices this year is– without the enhanced subsidies, they figure a lot of healthy people will just opt out. 

Emily:  I can see why people don’t sign up. I mean,  I don’t have that choice. But in order to get a subsidy, I’d have to lower my income, and to a very specific number – which is less than I live on now. And watch it to make sure I don’t take in a penny more. 

Dan: While still paying hundreds of dollars a month for Obamacare – even with a subsidy.

Emily: And look. This is a thing a lot of people do. All the time. –intentionally limit their income to qualify for assistance.. To keep Medicaid, people skip out on jobs, careers, marriage. 

 So my situation is NOT unique. It’s definitely not the worst.

Dan: You’re our in-house case study. You can’t stand in for everybody.

I mean, just to add one more wrinkle: If you didn’t live in a super-expensive city, your premiums would actually be lower..

I used that calculator to look up what you’d pay for a silver plan in … Chicago, like where I live? Way, way cheaper. Like, unsubsidized? A lot less than a New York plan *with* a subsidy. I’m just saying.

Emily: That’s… wild. No shade on Chicago But I don’t think I’m ready to make a long distance  move for health insurance yet.

Dan: I’m just saying… 

Emily: But while we’ve been looking ahead to 2026 insurance, I’ve actually had a more-immediate decision to make.

Dan: Right.

Emily: LIke I said before, I had insurance through my old employer. But that’s ending. While we were doing this story, I had to figure out health insurance for the last three months of 2025.

Dan: You ended up getting some help from a real expert.

Emily: I sure did.

Dan: And: I called up An Arm and a Leg’s insurance broker.

Because like we said: If Emily’s a case study, so am I. We’re so small, and I’m the only one here who’s needed health insurance from this tiny little enterprise. Now, things are a little different.

What we’ve learned, and what’s next. That’s just ahead.

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health issues in America. Their journalists — like Julie Appleby — do amazing work. We’re honored to be their colleagues.

Emily: Julie Appleby left me with a little advice: Connect with an ACA navigator.

Dan: Navigators: These are folks who can guide you through the process of signing up for Obamacare. They’re not brokers, they don’t make a commission. They’re paid by the government. 

Emily: But they’re not government employees — local organizations work on government-funded contracts.

Dan: Which makes sense– Obamacare plans themselves are basically local: The menu of plans to pick from, they don’t just vary from state to state: They can be different from one county to another.

Emily: And I wanted a little perspective on how the whole navigator program works.

Dan: And it turns out: We know someone at the organization that coordinates all the navigators in New York state.

Elisabeth Benjamin: My name is Elizabeth Benjamin. I’m Vice President for Health Initiatives at the Community Service Society of New York.

Dan: We’ve spoken with Elisabeth before — a bunch of times — about her work pushing hospitals in NY to quit suing people over medical debt.

And yes, it turns out her shop also runs the network of navigators throughout New York.

Emily: But when we talked, it turned out, her connection to the navigator program is a little different than I’d expected.

Elisabeth Benjamin: I don’t, you know, run it day to day, but I, myself do help people individually enroll. Because it’s really important to understand what people are experiencing, what their concerns are. I have like a small group of people that I help every year, Lots of friends, children.

Emily in interview: Oh, that’s awesome. Okay. Yeah, I bet you’re like a great like auntie to have..

Elisabeth Benjamin: You know, people that turn 26 and the parents are like, I know, please, will you help me?

Emily: She was like: Look, everybody needs help.

Elisabeth Benjamin: The bottom line is, you know, it isn’t for the faint of heart. It is hard to work through these websites. I mean, they are as user friendly as possible, but there’s like little kind of little moguls that you have to kind of ski over and it’s easy to kind of miss a mogul and faceplant, and we don’t want that to happen.

Emily: And when I told her about how my story fits into this episode, she was immediately like.

Elisabeth Benjamin: Oh, well, I can help you.

Emily: Not with my whole 2026 dilemma: there’s just no information about 2026 plans out there yet. But for my immediate question — what do I do about the rest of 2025 – she was like, I’m pretty free tomorrow.

Elisabeth Benjamin: You can tape your enrollment.

Emily in interview: Oh my gosh, that would be amazing.

Dan: Seriously amazing. I mean, it sounded like good tape, which we always like. 

But also — we talked that day, you and me: You were really weighing some big decisions. 

Emily: I mean one was: Do I sign up for Obamacare for the rest of the year, or do I stay on my old employer’s plan?

Because a law called Cobra means they have to allow me to buy in — but I’d have to pay the whole monthly premium, which was SUPER high. More than a thousand dollars.

So Obamacare was looking good. Those extra subsidies are still in place through the end of the year.

Dan: There was a downside.

Emily: Yeah — starting a brand-new plan would mean starting with a brand new deductible– money I’d have to pay out of pocket before the new insurance kicked in for most things.

Dan: Those can be like thousands of dollars. 

Emily: Yeah, but then there was an amazing surprise: In New York, where I live, a new state law means that all Obamacare plans include insulin with no copay. Even if you haven’t paid out and hit your deductible. That’s a deal I’ve *never* gotten from any insurance, ever.

AND this deal included other diabetes supplies — like my continuous glucose monitor. That stuff can be hugely expensive.

So my thinking was like: I’ll grab the cheapest Obamacare plan– and get all my diabetes supplies — and I’ll try not to go to the doctor for the rest of the year. 

Elisabeth Benjamin: Okay, so ready?

Emily in interview: I’m ready.

Emily: The next morning, I showed up at Elisabeth Benjamin’s apartment.

Elisabeth Benjamin: All right. So Emily, here you are, you’re on my dashboard. Oh, wait, here I can make this easier for you. Let’s do the big screen. Okay. 

Emily: Elisabeth started walking me through the application.  Name, date of birth, address… pretty routine to start. 

Elisabeth Benjamin: That’s your phone number…

Emily: And at this stage I’m wondering if I should’ve just done it all myself and left poor Elisabeth alone.

But after a while — once we started actually looking at plans, I was like: Oh wow. Elisabeth was able to like really zip through things. It was a whole vibe.

Elisabeth Benjamin: Hold on one second. That’s not, that’s not important I wanna see if this is in network…

Emily: And she spotted things I would have totally missed.

Elisabeth Benjamin: So this is kind of an interesting plan. ’cause you would be able to go to a doctor or a specialist before the deductible.

Dan: Wait, you could do a doctor visit before you spent that deductible? That’s a thing?

Emily: Yeah, in that one plan, I guess? But even Elisabeth had to really dig to figure that out. 

Elisabeth Benjamin: Like see, it’s sort of a little frustrating because you wouldn’t, you couldn’t really tell that from this. This is why it’s helpful to have a navigator

Emily: I mean, super-helpful: With Elisabeth’s help, I got a plan 

Elisabeth Benjamin: and you’re done. 

Emily: where OK, I can’t actually SEE a doctor before the deductible. Not in person. But I CAN do telehealth. So if god forbid I get some kind of weird infection, I could get a prescription. Oh, and my actual doctor, like my endocrinologist, is covered. And the deductible is much, much lower than the other plans I’d been looking at. I mean, it’s still scary as hell, but HALF as scary-as-hell?

Dan: And the only catch is: You have to do this all over again in November or December. Except then — unless Congress extends the extra subsidies — you may be looking at much higher monthly payments.

Emily: Right. Actually, let’s come back to me in a minute. Because the good news in my case: At least I’ll be able to get Elisabeth’s help again. Like, she offered to, which was so nice. But also: even if she’s super-busy, I’ll be able to talk to another navigator. Because I live in New York.

Dan: Yeah. This is one of the things we learned from Elisabeth. It goes back one of the reasons we wanted to talk with her in the first place. Because there’s another big change with Obamacare this year: the federal government is cutting funding for navigators by like 90 percent. We wanted to hear from Elisabeth — how is that gonna affect her group’s work.

Emily: And — this was a surprise: She said it won’t affect her work at all– because New York navigators are funded by the state government. Turns out the same thing is true for about half the states. But I talked with Elisabeth’s counterpart in a state where that is not the case. 

Nicholas Riggs: We are not gonna be able to reach the number of people we did before. That’s just reality. You can’t do more with less. People will lose their coverage because of this.

Emily: That’s Nicholas Riggs. He runs the NC Navigator Consortium.

Nicholas Riggs: We cover all 100 counties. We’re the only navigator entity in North Carolina.

Emily: He says a big piece of their work is actually outreach– finding people who may not know they can get this kind of help.

Nicholas Riggs: You know, there’s no list of the uninsured.

Emily: And they don’t just help people pick Obamacare plans– they help people sign up for Medicaid. A 90 percent budget cut hits all of that. He says they’re looking for more volunteer navigators, but it won’t be the same as having experienced staff. 

Nicholas Riggs: What you’re losing is institutional knowledge. Volunteer navigators are great. But sometimes it takes a few years to really get a handle on some more complex cases.

Dan: I mean, Emily — you experienced first hand how big a deal it was to hae, like,  a real expert walk you through this process.

Emily: Elisabeth spent almost an hour with me!

Dan: A lot of people won’t have access to that kind of help. It’s one more crummy thing we’re trying to help people plan for. You found a map that shows which states fund their own navigators. We’ll post a link — so people can see what the deal is in their state.

And Emily, let’s come back to you for a minute: You’re lucky to have access to the world’s greatest navigator, but unless Congress extends the enhanced subsidies, that next conversation with her is gonna be a lot tougher.

Emily: I mean, unless I get another job with health insurance first. 

Dan: So, about that: While you were having your first conversation with Elisabeth, I was talking with An Arm and a Leg’s health insurance broker, Kurt Kaufman.

Because I was like: What can I do to make it possible for Emily to stick around?

I asked Kurt, could we set things up for Emily to buy into An Arm and a Leg’s plan? Like, at all?

Our insurance is from Blue Cross Blue Shield of Illinois. Could it cover Emily in New York? He was like

Kurt K: Yeah, that’s fine.

Dan: Then she,

Kurt K: a hundred percent.

Dan: She could be insured on our Illinois based plan, 

even though she’s in New York.. Is that right?

Kurt K: All day long.

Dan: All day long,

Kurt K: yep., 

Oh, yeah.

Dan: So I was like: Um, how much would it COST?

He said, based on your age — insurance gets more expensive as you get older — like, five, six hundred.

Emily: That’s a LOT less than what the scary calculator said I’d pay for a Silver plan with no subsidies. That was showing like nine hundred dollars.

Dan: Yeah. I mean: These are 2025 numbers, just like everything else we’ve been looking at. Everything in 2026 is gonna be higher. But it seems like An Arm and a Leg gets a better deal than you’d get with Obamacare. However, there’s a but. You’d need to be full-time.

Emily: Aha!

Dan: Yeah. I mean we’ve got you at 20 hours a week.

Emily: Yeah.

Dan: I was like Oh my god. I’d have to DOUBLE that? But Kurt was like: Actually, no. The way insurance looks at it, if you were working an average of 30 hours a week, then you could qualify.

Kurt K: She could be meeting that definition of quote unquote full-time employee.

Dan:  Which, you know, isn’t in my budget for next year– and I’m still working to make sure some other parts of our scrappy little budget get funded– but it’s not DOUBLE. I’m starting to think about it– like, a stretch goal. I mean, I’d LOVE to have more of your time. I dunno.

Emily: I mean I like the idea a lot! But there are just a lot of unknowns, right?

Dan: Yeah, here’s where we’ve landed: You’ve got health insurance lined up for the rest of 2025. And after that, there’s so much we don’t know. Will I find more money? Will you take another job? 

And: Will Congress extend the enhanced subsidies? When we first started working on this story, over the summer, experts were like, “That’s not gonna happen.”

But in the last few weeks, SOME Republicans have been proposing it. We definitely don’t know — and it’s nothing we can count on.

It’s all, honestly, a little scary.

Emily: Honestly, more than a little.

Dan: BUT: We know more than we did. We’ve started really confronting the scary numbers and the unknowns. You’ve taken a practice run at picking insurance.

Emily: That was actually kind of a big thing.

Dan: It was, right?  And: I’ve started thinking about stretch goals.

We’re more prepared.

And — here was the point of doing this whole case study– I HOPE we’ve just helped a lot of other people get more prepared, to start planning. 

We’ll keep you posted on how things go for us. Some updates will show up in our First Aid Kit newsletter. 

If you’re not getting First Aid Kit, go check it out. 

Emily: While we were reporting this story, we published a guide there: Get ready, emotionally and financially, for 2026 health insurance.

Dan:  It has links to resources we talked about here, and we’ll have more in this week’s First Aid Kit. 

What you wanna do is go tor at Arm and a Leg show dot com, slash, first aid kit.

You’ll find the whole archive there — including notes about honestly, some extremely exciting projects that Arm and a Leg listeners are doing — and how you can pitch in. 

We’ll be back with another podcast episode in a few weeks. Till then, take care of yourself.

Emily: This episode of An Arm and a Leg was produced by me, Emily Pisacreta 

Dan: and me, Dan Weissmann. 

Emily: With help from Janmaris Perez and Lauren Gould.

Dan: And edited by Ellen Weiss.

Dan: Adam Raymonda is our audio wizard. Claire Davenport is our engagement producer.

Dan: Our music is by Dave Weiner and Blue Dot Sessions.

Dan: Bea Bosco is our consulting director of operations.

Big thanks to Lynne Johnson, who just wrapped up her run as our operations manager. Lynne, your work has done SO much to make our work more sustainable. I can’t thank you enough.

Dan: 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.

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

Dan: An Arm and a Leg is Distributed by KUOW — Seattle’s NPR station.

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

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

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

For more from the team at “An Arm and a Leg,” subscribe to its weekly newsletter, “First Aid Kit.” You can also follow the show on Facebook, Instagram, LinkedIn, and Bluesky. 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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This story can be republished for free (details).

In their series “Health Care Hustlers,” Bloomberg reporters Zachary Mider and Zeke Faux revealed how this couple and thousands of other people signed up for health plans by unknowingly agreeing to work fake “jobs.”  

Mider and Faux join “An Arm and a Leg” host Dan Weissmann to peel back the surprising layers of this story, from a TV-sitcom-writer-turned-investor who masterminded the idea to the legal gray area that allows these plans to proliferate.

Credits

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

Dan: Hey there—

This story’s outline may sound familiar, but what’s underneath — what we unravel here: It’s a new kind of thing. And it’s weird. 

And it could become huge.

So: A couple from New York, Sarah and Joe Strohmenger started new businesses, so they needed to buy their own health insurance for the first time..

And Sarah says the New York state marketplace, with Obamacare plans, seemed a little risky: If they got a subsidy, and then their new businesses did well, they might have to pay that subsidy back.

Sarah Strohmenger: As new business owners, we had not a clue of how much we were gonna make in the year.

So we were nervous about. How much we were gonna have to back pay. 

Dan: Looking elsewhere seemed like a cautious thing to do. Google led them to a site that offered quotes for insurance policies — just enter your phone number. They started getting calls from telemarketers, a lot of them, and eventually they picked a plan one of them offered. 

Sarah and Joe thought they were being reasonably careful. After all, Insurance is a regulated business. 

Sarah Strohmenger: We’re thinking it’s monitored. We had no clue that this was kind of like a free for all.

Dan: So as you’ve probably already guessed: Pretty quickly, and very painfully, Sarah and Joe figured out that they’d been hustled. 

But it took a pair of reporters from Bloomberg News to uncover the nature of that hustle. 

Zach Mider: There’s this kind of new breed of people offering health plans to the public that are not, um, not insurance companies at all, 

Dan: That’s one of those Bloomberg reporters, Zach Mider. As Zach and his reporting partner Zeke Faux revealed, this telemarketer had — on paper — made Joe an employee of a company he’d never heard of until those reporters told him about it.

And according to the legal theory underneath all of this, making Joe a certain kind of employee allowed the salesman to sell Joe an insurance plan so skimpy that— as Zach and Zeke’s story says — it would “normally be illegal.”

Zach Mider says these kinds of plans currently operate in a legal grey area, with nobody regulating it — not states, not the feds. 

Zach Mider: So it really is just kind of this weird legal vacuum where, you know, market actors are free to kind of jump in and start trying to do this.

Dan: Which, Zach says, they seem to be doing, more and more. 

Zach Mider: It looks like the numbers are shooting up

Dan: In their Bloomberg story, Zach and Zeke cite hundreds of complaints to the FTC from people who were sold these kinds of health plans.

They also write about meeting the guy who seems to have invented these plans — a former TV sitcom writer who they say actually believes he’s solving an important problem.

Their reporting — in a series called “Health Care Hustlers” — shows something else too: 

How each hustle gets created by a chain of legally-distinct operators — some of them truly operating completely independently of each other — and how, by being just one link in a chain, each operator can say:

“I was just doing a totally legit thing. It’s not my fault if some other guy is shady.”

Basically: These stories are showing us, more clearly than I’ve ever seen, what we’re up against when we take a call from somebody who says they’ve got a great insurance plan for us.

And it’s a totally wild ride. Here we go.

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

To start, here’s how bad things got for Sarah and Joe Strohmenger.

As they knew: They needed good health insurance. They’ve got pre-existing conditions.

For instance, Joe takes medicine that Sarah says costs 1500 dollars a month. And he’s got a benign brain tumor and has a doctor monitoring it. 

Sarah Strohmenger: That doctor was the most important doctor because it’s a doctor you can’t afford without health insurance.

Dan: Sarah says the monitoring includes periodic bloodwork and MRIs.

So she says when they were picking this plan, they asked about the doctor, about the tests, about the medicine, all their providers.

She says the sales rep for this plan told them, Yes. That is all covered.

Sarah Strohmenger: You know, it sounded great, covered everything that we needed.

Dan: Joe and Sarah paid about 87 hundred dollars upfront— a discount for a full year’s coverage. 

But Sarah says once they tried actually using the plan, things went south. She says their pharmacist told her Joe’s medicine wasn’t covered, and Joe’s doctor said his visits weren’t covered either.

And she says bills arrived that she did not expect.

Sarah Strohmenger: We were getting blood work bills back in the mail, for like $4,000 at a pop at a time, 3000.

Dan: According to the Bloomberg story, Joe called the company they’d bought the policy from— and reached a guy who said upgrading their plan would fix everything. They ultimately paid 20 thousand dollars for insurance that still didn’t cover what they needed.

Sarah says she thinks they also ended up on the hook for 10 to 15 thousand dollars in medical bills. 

Sarah Strohmenger: Within like six months, we stopped going to doctors.

Dan: They couldn’t afford to.

Sarah Strohmenger: We just were like, if we end up in the hospital, we’re basically screwed, you know? So Joe stopped going to all of his doctor’s appointments, he stopped taking his medication, and it was bad.

Dan: Meanwhile, Sarah says they also complained to state regulators about the company that sold them this policy.

The regulators wrote back, saying: We’ve never licensed or approved this entity. So… sorry. Sarah was like, Wait, WHAT? 

Sarah Strohmenger: I lived in a paradox that I didn’t know existed for a year. My mind was blown. 

Dan: I’m telling you — it’s REALLY weird. I’ve seen the letter, that’s what it says. And no: It’s not like there’s some other state office Sarah was supposed to write to. I checked.

Sarah says she and Joe took legal action against the marketing company, but they haven’t recovered any money. She says they paid off all the bills. And she says they signed up for a plan on New York’s Obamacare marketplace, which has been covering what they need. 

But she never understood what the heck had happened — the nature of the hustle — until she sent her story as a tip to Bloomberg News, and Zach Mider got in touch.

As it happened, he’d been digging into exactly this kind of hustle. 

Which has, I have to say, just an amazing number of layers and twists. Starting here:

When Zach looked at Sarah and Joe’s insurance cards, he noticed something that they had missed.

The name of a GROUP at the top — like as if this was a group plan, like you’d get from your job. 

And that was a key to the whole arrangement. That group — Outreach Data Partners Limited Partnership — is not an insurance company.

As Zach puts it, their legal stance is: They haven’t sold insurance to Sarah and Joe — or anybody else. That’s not the relationship.

Zach Mider: They’re claiming they have an employer-employee relationship with the people who buy health plans from them, and therefore, all of the state insurance laws don’t apply. 

Dan: Now, first: It’s actually true that for most people who get health benefits from their employer — like two-thirds — state insurance laws don’t apply. Lots of employers operate plans regulated by the federal Department of Labor.

Which Zach says is how Outreach Data Partners set up the plan Sarah and Joe bought.

All of which was news to Sarah and Joe.

Zach Mider: They just thought they were buying health insurance. 

Dan: And if they’re workers here, what was the JOB supposed to be?

Zach Mider: Yeah, that’s a great question. So, there is some work that is supposed to be done.

Dan: OK, strap in: Zach says to start with, in theory, the company gives you a special browser to use on your phone.

Zach Mider: The idea is if you want to go do something on the internet, you use this special browser and they’re collecting data about people’s browsing habits which then they can turn around and sell that information to advertisers.

Dan: So that’s the “job”: By using this browser, you’re producing value for the company— you’re working for them. Joe and Sarah told Zach they never got any special browser. And of course there’s another thing they might have expected to get from a job, ANY job: A paycheck.

And here’s how Zach says that absence gets explained.

Zach Mider: These data companies have been described to me as sort of, they’re startups, right?

Dan: And here’s where the full name of this company comes into play: ?Outreach Data Partners Limited Partnership. On paper, Joe and Sarah aren’t mere employees, they’re … limited partners— part owners. But in a company that hasn’t started making money yet. 

Zach Mider: Maybe they have a millionth share of the company. And so if the company starts making a lot of money, they will get a check. 

Dan: I don’t think Joe and Sarah are holding their breath for a check from Outreach Data Partners.

According to the Bloomberg story the company doesn’t have a public-facing website, and LinkedIn doesn’t list any employees. But the story also says that in a government filing the company claims 4,800 workers.

Zach and Zeke checked out the company’s headquarters: Box 371 at a UPS store in an Atlanta strip mall — between a dry cleaner and a Vietnamese restaurant. 

They found more than a dozen other companies using the same mailbox as their address — companies with names like Consumer Data Partners. All told, their story says these companies claim more than 30,000 employees.

And when Zach and Zeke started calling people connected to those companies, they ended up talking with the guy who seems to have invented what they call this fake-jobs healthcare setup.

A guy named Bill Bryan.

Zach Mider: Bill Bryan, was a pretty successful sitcom writer in the eighties and nineties. He wrote for Night Court

Judge from Night Court: What’s up Mac?

Mack from Night Court: A little case of disturbing the piece at a Star Trek convention, sir.

Zach Mider: And Coach

Craig Nelson: I didn’t lose the game. The team lost the game. I didn’t.

Zach Mider: And he wrote for a bunch of others. And then he does some real estate deals. He gets involved in some other investments. He ends up being a fairly wealthy guy and looking for new things to invest in, and comes across the idea of doing something with health plans.

Dan: ?Zach says, the idea was this: Obamacare had imposed standards on a lot of health insurance. Minimum stuff that had to be covered. Hospitalization. Mental health services. Prescription drugs. But covering all that stuff is expensive. It means premiums can be high, even with subsidies. And deductibles can be super-high: Thousands of dollars.

So Bill Bryan thought… 

Zach Mider: maybe if there was a way of designing a product that was legal. That covered less stuff than Obamacare, but still gave people what they wanted. You know? Um, it’s a free country. Maybe people should be able to decide what kind of healthcare they wanna buy and not have to meet all these minimum standards that maybe they’re not interested in.

Dan: So the plan that Sarah and Joe got sold, Zach says it does not meet those minimum standards. He says it covers like three doctor visits a year, a couple of lab services, and not a lot else.

Zach Mider: No coverage for hospitalization, no cover for emergency room visits. There is a prescription or there is a pharmacy benefit, but it only covers generics. 

Dan: Zach says Bill Bryan really thinks: that’s a product somebody might prefer to an Obamacare plan with a high deductible. Under the Affordable Care Act, you can’t sell that product as insurance. Actually, if you have a lot of employees, you can’t offer it to them either. 

But as a health-insurance law expert at Georgetown told me: You could maybe offer it to OWNERS of your company.

So by making people like Joe and Sarah LIMITED PARTNERS, maybe you could offer them this kind of super-stripped-down health plan legally.

Zach says: Bill Bryan thinks of this as a way to fix a problem he sees with Obamacare: Full coverage is too expensive for some people. 

Zach Mider: He’s a very smart guy, and so over the years he’s had to fight a lot for this, and I think that’s only kind of strengthened his conviction that it would be a corrective to the Obamacare system to have something that’s more affordable and more accessible for people to get.

Dan:Of course, that’s not what Joe and Sarah wanted – price wasn’t their top concern. They needed insurance that covered their providers, their treatments, their tests, their meds. That’s what they thought they were paying for.

I asked Zach and Zeke, what does Bill Bryan say about the kind of thing that happened to Joe and Sarah? 

Zach Mider: So it, it’s really important to point out here that like Bill Bryan didn’t sell the plan to Joe and Sarah. You know, he doesn’t do the call centers, right? These salespeople are all kind of independent operators who are essentially just selling this stuff for a commission. And so, he certainly doesn’t defend anybody misleading a customer.

Dan: According to Bloomberg’s story, Bryan said he had cut ties with the agency that sold Joe and Sarah their plan — years ago. 

And when he was told that the agency had sold the couple one of his plans much more recently, Bryan said, “That is absolutely news to me. I just don’t have anything more to say about any of these motherfuckers.” 

Zeke Faux: When we were talking with Bryan, though…

Dan: That’s Zach’s reporting partner, Zeke Faux.

Zeke Faux: …he and his colleagues were pretty evasive about exactly how these plans are sold.

Dan: Zeke says the way the plans are sold — specifically, the big commission rates for salespeople — was one of the reasons he and Zach got interested in this story in the first place.

Zeke Faux: Basically, the percentage of whatever the customer’s paying that is going to the salesman and the various middlemen involved is so high that it’s kind of hard to imagine that the customer could be getting a good deal. 

Dan: Even if the plan was cheap. Zach had pulled some data, crunched some numbers. The Bloomberg story says— at least in some cases— all those commissions and fees added up to 74 percent of what people like Joe and Sarah paid for these plans.

Zach Mider: If a person’s paying a dollar almost 74 cents is gonna go to commission to other various middlemen and whatever and only 26 cents is left for actually going into the pool from which medical care is paid out of. 

Dan: 26 cents for medical care. So, just to compare. Obamacare requires insurance plans to spend at least 80 cents of every dollar on medical care.

Everything else — your sales operation, all your admin costs — including the people who deny claims— and your CEO’s pay, and your profits — has to come out of that remaining 20 cents. 

With Bill Bryan’s plans, Zach’s numbers show that ratio can get almost flipped: 26 cents for medical care. 74 cents for commissions, fees, everything else

Zeke says: They brought these issues up to Bill Bryan. 

Zeke Faux: And when we tried to ask about that, Bryan and his colleagues pleaded ignorance, as if it was not really their business how the salesmen got paid.

Dan: And this is a big, big theme in this story: There’s no SINGLE entity doing all of this. It’s a chain of different players, and each one can blame the others.

Bill Bryan blamed the sales outfit for what happened to Joe and Sarah. 

And that company? Their CEO told Zach and Zeke that Outreach Data Partners screwed up, denying claims for the Strohmengers that should’ve been paid. And as the Bloomberg story reports: Bill Bryan dismissed that notion.

But there are more links in this chain than that. For instance, Outreach Data Partners — the company that theoretically made Joe and Sarah limited partners?

Bill Bryan does not run it. He doesn’t run ANY of the companies that employ 30,000 people from a mailbox in an Atlanta strip mall.

Which isn’t to say that he has nothing to do with them. That’s next.

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health issues in America. Their journalists do amazing work. We’re honored to be their colleagues.

So, Bill Bryan seems to be the mastermind behind what Bloomberg calls these 30,000 fake-jobs, and the health plans they offer.

But no, he doesn’t run the data companies behind those jobs. That would be illegal. 

Zach Mider: The data companies themselves wouldn’t be allowed under federal labor law to turn a profit on these health plans.

Dan: I mean, that sounds like a good law: Your boss isn’t supposed to make money by selling you a health plan. 

Zach Mider: So it’s all very segregated. They’re very careful to say these data companies are separate from us. The data companies are employing these people and they are sponsoring these health plans. And Bill Bryan’s role is he runs a series of vendors which provides services to the data companies.

Dan: Services like … running a health plan! Which, for a normal company, is a normal arrangement.

Remember how we said: Lots of employer health plans — ones tied to normal jobs— are exempt from state insurance laws?

The way those plans are set up, the employer normally hires a vendor — typically a big insurance company, like Blue Cross or Aetna — to run their health plan.

These data companies, instead of hiring Aetna to administer a health plan — for their 30 thousand “limited partners” — they’re hiring a company that Bill Bryan happens to run.

Zach Mider: I think he’s done a pretty good job of keeping these things formally separate, right? So he’s not formally in control. He doesn’t own the data companies, doesn’t formally direct their activities.

Dan: But Zach says: Bill Bryan seems to have had a hand in getting them set up. So they could offer health plans. That he could run.

Zach Mider: I think it’s fair to say that this was his and his partner’s idea, this whole kind of construct. But he’s tried pretty hard to, as a formal matter, make it compliant with federal labor law.

Zeke Faux: I feel like we should call the data companies and be like, hey, I can see that you have a lot of complaints about your health plan. It might be hurting recruiting. You know, would you like to switch to Aetna? Then we could find out if, uh — how independent they are.

Dan: That’s Zeke again, and yeah: He and Zach wrote in their story that they found HUNDREDS of complaints to the Federal Trade Commission, and the Better Business Bureau, and Apple’s App store about health plans tied to fake jobs.

A graphic that goes with their story shows dozens of quotes, like: This whole thing feels like a big scam that I fell for.

And: I can’t imagine I am the only person who has been lied to and basically stolen from.

And: Stay away at all costs.

Which raises a big question: Is any of this really legal? Isn’t there someone regulating it?

Zach says Bill Bryan wants answers to those questions too. 

Seven years ago, a data company the Bloomberg story describes as “allied with Bryan” went to the Labor Department for clarification— and validation. Basically, they said:

Zach Mider: We want you to sign off on this and confirm to everyone in the marketplace that this is legit. That these are real employees, these limited partner employees who are downloading the web browser are real employees, and that therefore we can sell ’em, these health plans without any problem. And the Department of Labor when push came to shove said, no, these aren’t employees. You’re just trying to sell insurance.

Dan: Bryan’s allies went to court to fight back. 

Zach Mider: And they’re still fighting over it all these many years later. That was 2018 when they were first trying to get this opinion. And um, now it’s 2025 and it’s still unresolved. 

Dan: ?Here’s what’s happened so far: A district judge ruled against the Labor Department, calling its opinion “arbitrary and capricious.” An appeals court later agreed with that conclusion, but sent the case back to the district court to reconsider other details, including: what should happen next.

Zach Mider: So the way it stands, it’s really in a kind of strange limbo, where the Department of Labor really doesn’t get to say, these are legit, or these are not while we wait for the litigation to play out. But it does open the door for other people like Bill Bryan to come into the marketplace and start selling this kind of stuff. 

Dan: And it looks like they have. The Bloomberg story has a chart, showing the number of households enrolled in “fake jobs” plans. After the appeals court ruled against the labor department, the numbers more than doubled.

And meanwhile, NOBODY is regulating these plans. They’re not traditional insurance plans, so state insurance departments don’t have jurisdiction. So with the federal case on hold, people like Sarah and Joe have no one to turn to.

In a letter to the editor that Bloomberg published, Bill Bryan blames what happened to people like Sarah and Joe on the Labor Department, for not validating his model.

“If the department stepped up and played its proper role,” he wrote, “the fraud reported in your story could have very well been prevented.”

He added: “At a minimum, it would give victims someplace to seek recourse.”

So: everybody’s got somebody else to blame. 

Which is one of the themes that connects Bill Bryan’s story with a totally WILD tale that Zeke traced to Florida. One that doesn’t start out sounding like it has anything to do with health insurance.

In 2024, he writes, “if you were poor and online, certain ads were everywhere you looked.”

These ads featured celebrity deepfakes — promising 6 thousand four hundred dollars, if you call a certain phone number. 

Zeke Faux: I mean, it looks like it’s Taylor Swift, and she’s saying…

Fake Taylor Swift: Remember those stimulus checks? Well, there’s a new thing going viral. 

Zeke Faux: Or it’s Dr. Phil and he’s saying..

Fake Dr. Phil: They’re giving out $6,400 to anyone who makes the call 

Zeke Faux: Or Andrew Tate saying…

Fake Andrew Tate: If you don’t act now, you’re basically throwing away $6,400. That’s just stupid.

Zeke Faux: And these ads didn’t even, they might briefly mention health insurance or maybe they don’t say health insurance at all.

Dan: But if you called that number, you’d end up talking with someone ready to sign you up for health insurance. 

Sign you up so quickly that… you might not have any idea that’s what had just happened. 

Or, for that matter, that no, you would not be getting 64 hundred bucks to spend.

This story goes in some WILD directions, but here’s how Zeke describes the connection with the fake-jobs saga. 

Zeke Faux: in reporting both of these stories, I think what we learned is that there is kind of a subculture of call center operators who have turned what seems like a pretty boring business selling health insurance into a get rich quick kind of operation.

Dan: The call centers, the telemarketers. That’s the connection— Bloomberg paired these stories under the heading “Health Care Hustlers.”And those hustlers are always looking for a new angle. 

Which is to say: Zeke and Zach’s stories reinforce a big Arm and a Leg rule: 

If the internet leads you to a phone call with someone who says they’ve got a GREAT health insurance deal for you… be very, very suspicious.

And a lot of people will be looking for deals on health insurance. 

During the Biden Administration, Congress added more-generous subsidies to Obamacare plans, which made them more affordable. 

Unless Congress re-ups them soon— which seems unlikely— those extra subsidies will expire this year. 

People will look for alternatives, and these call centers will offer them.

In a way, it’s back to the future: 

The first Trump Administration loosened certain rules, making it easier to sell short-term plans that didn’t meet Obamacare standards. Zeke says he reported on the results back then.

Zeke Faux: I spoke with people who had bought these plans and then had medical emergencies and been stuck with 50 or a hundred thousand dollar bills, so we’ll be — we’re kinda watching to see what new products emerge or what these call centers start selling. 

Dan: And meanwhile, just — look:  Don’t buy insurance over the phone from somebody you’ve never met. Don’t bother with google. Healthcare dot gov. That’s basically it. 

What you’ll find there, I’m not saying you’ll love it. It’s probably gonna cost more than you want to pay, and deductibles will likely be high. 

But even though subsidies for Obamacare plans aren’t AS generous this year, they still exist. And these policies are regulated. Anything else… like Sarah Strohmenger said, it’s a free-for-all. And there are some hustlers out there. 

Meanwhile: the Trump Administration and Congress have both set up changes to the ACA marketplaces — administrative hassles that will make it harder to get, and keep, your coverage.

The time to start planning for it is now. And we’re gonna have some help for you, starting with next week’s First Aid Kit newsletter. 

My colleague Claire Davenport has been digging into those changes, what they mean for all of us, and how we can start preparing. 

You can sign up on our website at armandalegshow dot com, slash, first aid kit.

By the way: We just launched a new version of our website — with a brand new feature: Starter Packs. 

Here’s where we bring together our best reporting on questions you need answers to, like: How do I shop for health insurance? 

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

and we’ll be back with a new episode in a few weeks.

Until then, take care of yourself.

This episode of An Arm and a Leg was produced by Emily Pisacreta and me, Dan Weissmann — with help from Lauren Gould—

And edited by Ellen Weiss.

Claire Davenport is our engagement producer. 

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.

An Arm and a Leg is Distributed by KUOW — Seattle’s NPR 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 Arm and a Leg show, dot com, slash: support.

Thanks! And thanks for listening.

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

For more from the team at “An Arm and a Leg,” subscribe to its weekly newsletter, First Aid Kit. 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).

Host Dan Weissmann and producers Emily Pisacreta and Claire Davenport share tips from a retired hospital manager who now helps seniors find the right Medicare plans, a pharmaceutical sales rep, an employee benefits adviser, and a battle-worn hospital caseworker. Each brings surprising, maybe even lifesaving, information to the table.

Explore the full crowdsourced series, including five installments of the “First Aid Kit” newsletter: The Prescription Drug Playbook.

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 meet Jeanne Chamberlin from North Carolina. She regularly talks with folks who take like 15 different meds every day. 

Jeanne Chamberlin: You are like, oh my gosh. And literally the retail costs are $20,000 a month. 

Dan: Jeanne’s an expert, twice over. Since retiring from a career managing hospitals and medical groups, she’s been helping her fellow seniors figure out how to manage what they pay for health care — as a county-level volunteer coordinator for a program called SHIP. 

Jeanne: And SHIP stands for Seniors Health Insurance Information Program. 

Dan: Actually in some cases it stands for State Health Insurance Assistance Program. 

Whatever you wanna call it — It’s a federally funded program that helps seniors with all things Medicare. Every state has its own version of SHIP. 

During the busy season — that’s in the fall, when people can pick new insurance for the coming year– Jeanne says she and her team speak to more than a hundred people a week. 

And one thing that comes up in basically ALL of those conversations: Can I change things to get my meds for less next year? 

She says one year, her team added up the impact of those conversations. Half of the people changed plans, and on average, they saved 300 dollars. Not bad… 

Jeanne: But there were many, many people who saved a thousand, 2000, even $10,000 by changing from one Medicare plan to another based entirely on the cost of their drugs. 

Dan: Jeanne’s gonna tell us how she helps people get those kinds of savings– with strategies that aren’t just for people on Medicare. 

And Jeanne is just one person who wrote to us when we asked for you, our listeners, to tell us about your tactics and tricks for dealing with the high cost of prescription drugs.

The result: two podcast episodes– this is number two — and four installments of our First Aid Kit newsletter. 

In this episode, we’re gonna hear from Jeanne and three other *incredible* sources who came to us with crucial insider knowledge. Knowledge that — now they we have it– we have to share with you. 

Jeanne’s gonna help us get set up. She’s gonna share what she tells those seniors, and how it can apply to anyone, at any age. 

… Then, a pharma insider is gonna air an open secret. 

An employee benefits advisor — a kind of scout for deals — will tell us where she’d send someone struggling to pay for meds. 

Finally, we’ll meet a battle-worn hospital caseworker. And beyond the specific tip she wrote in with, her work – and life story – are gonna bring us some deeper perspective. 

These people kick ass. 

And for all their advice, there is, of course, a BIG caveat: 

like we said last episode — your mileage will vary. There is no one solution for everyone. This is a set of patches, workarounds, bandaids. 

To be honest, a lot of them are actually weird byproducts of the profit-making machine. Which is a big reason they’re so patchy and unreliable. 

We deserve SO much better. But in the meantime, we can help each other. That’s what this project is about. Including the four newsletter installments I mentioned. And we’ll link to those from wherever you’re listening — so: you don’t need a pencil and paper here. We’ve got you. 

Our hope is that you walk away from all of this armed with a *little* more knowledge that could help you or someone you care about get the meds they need. A kind of leg up. An Arm and a Leg-leg-up. 

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. 

So, first: Jeanne wrote to us about what she knows from helping people enroll in Medicare. But she also had an instructive personal story to share. Because even experts have to scramble sometimes. 

A while ago, when Jeanne’s husband had a gut infection, he got prescribed two antibiotics. His insurance coverage meant one was gonna cost him thirty bucks. But the other one? His plan didn’t cover it And… . 

Jeanne: It was $1,200. For a 14 day supply it was just obscenely expensive. 

Dan: So immediately, Jeanne says she went into problem solving mode. And her order of operations provides a great template for any of us. 

Step one: Google for discounts. Just taking a quick first pass at the kind of thing we talked about in our last episode. Maybe that’s GoodRx. Maybe that’s a coupon from the drug maker. Results for Jeanne: Not great. 

Jeanne: I could get it down to $800. It’s like, still, you’re like $800. Really? 

Dan: So, on to step two: Tell your provider there’s a problem and ask for advice. 

Jeanne: We went back to the doctor and said, is there something else that you know you can do? 

Dan: Jeanne was thinking: Maybe the doc could recommend another antibiotic — one that insurance would cover. Or help them fight her husband’s insurance to get this drug covered. 

But actually, the doc’s proposal was much simpler. 

Jeanne: She said just take the other one. 

Dan: Just take the one Jeanne’s husband could get for thirty bucks. Skip the second drug. 

Jeanne: So he did, and he was fine!

Dan: END OF STORY. In this case. It’s not always that easy. But the moral is: ASK. If your insurance covers a different drug, your doc can tell you if it’s a good bet for you. If not… well… we’ll come back to other ways your doc could help. 

But right now let’s move on to the biggest, most valuable advice Jeanne gives to seniors– and that applies to everybody. 

Especially anybody with meds they’re taking long term, like blood pressure or cholesterol meds, or whatever. 

And the advice is this: Look ahead, every year. 

In the fall, when it’s time to sign up for next year’s insurance plan: Get a look at the list of which drugs your insurance will cover, and how much they expect you to pay for them. It’s called the formulary. 

Because even if you don’t change anything about your insurance, your insurance could change the formulary. That can happen to anybody. 

Jeanne sees it all the time with seniors, when their plans reboot at New Year’s. 

Jeanne: People come in in January and this happens every year, and say, I just went to the pharmacy and. They want $300 for my medicine. And last year, or last month in December, it was $30. 

Dan: These folks didn’t plan to change anything about their insurance — but their insurance plan changed on them– and stopped covering a drug they’ve been taking. Now they’re getting charged sticker price. 

And Jeanne’s like, ‘Man, I wish you’d have come to see us during the fall sign-up– open enrollment.’ 

Jeanne: We could have probably found a plan that covered that drug still.. 

Dan: Now, it’s true that folks on Medicare tend to have more choices than the rest of us here. In Medicare, drug coverage is its own separate plan — called Part D — and seniors in Jeanne’s county have more than a dozen to pick from. 

If you get insurance from work — and maybe there’s just one plan — this thing of looking ahead is maybe even more important.

At some point, maybe a couple months before the new year, you should get a chance to see that next year’s formulary 

And it could say, “Hey, your drug is gonna be more expensive for you next year” 

That’s your cue to start problem-solving right away. Get a plan in place before that new price kicks in. 

Step one: Check: Can you find discounts online that make this drug affordable? Cool. 

No? Time to get in touch with your provider’s office: start tapping their expertise. 

Jeanne: The provider normally has a lot of people with your condition and probably prescribes this medication a lot. 

Dan: And so, if your insurance company says they’ve got some other drug you could take, one they’ll pay for– your provider will know: could that drug work for you? 

And if you’ve got a choice of plans — but they all require a special approval process now for your drug — your provider will know: Is one of them more likely to actually issue that approval? 

Jeanne: Ask them about a plan where they have an easy time getting it approved for somebody with your condition where it always goes through. 

Dan: And that’s the plan you want to pick. And, speaking of getting your insurance company’s approval: 

We’re about to move from Jeanne’s advice– plan ahead, get your provider to help — to the next step. Because you can’t plan everything. Sometimes you get sick, with something new. No planning for that. 

And sometimes, your insurance is definitely not gonna say yes right away to the drug your doc thinks you need. And your doc thinks you need this particular drug. So, how ELSE can your provider help?

John: I work, uh — work for an industry with an approval rating below Congress. 

Dan: He’s a pharmaceutical sales rep! He asked us to keep his full name and employer confidential. 

He’s also an Arm and a Leg fan. 

John: I love it when, uh, I hear stories of average people just sticking it to the insurance company. It’s nice when the patient wins, cause they don’t get a lot of wins. 

Dan: We reached John in his primary office — also known as his car. 

When we asked listeners a few months ago to share lessons about getting prescription meds without paying an arm and a leg, he wrote right in with tips. 

And one, I love just for the attitude. Here’s John reading from the email he sent us: 

John: Step therapies. Uh, denials and price at pharmacy should be viewed as suggestions. 

Dan: Suggestions. Perfect. The other is much more specific. As a salesman, a big part of John’s job is prepping doctors for the fights they’re gonna have with insurance companies, to get approvals for drugs. He does that because approvals for them mean sales for John. 

Of course, approvals take time. 

John: But one thing that you know doesn’t care about time is diseases. 

The disease of Crohn’s or Bipolar disorder, whatever, isn’t like, look, I’ll hold off on affecting you until this prior authorization is done. 

Dan: So here’s John’s advice: while you’re fighting for that approval– pushing back on the insurance company’s “suggestion” that you try something else– Ask your provider if they can get free samples from the pharma company — from a rep like him.

John: And the provider hopefully will say, yeah, let me call the rep and we’ll leave some at front for you. 

Dan: Actually, your provider may already have some on hand. A study from a few years ago found that TWO THIRDS of primary-care practices had CLOSETS of pharmaceutical samples. Which, wow. 

So, let’s address something big: Like John joked about as we introduced him, pharma sales reps are NOT generally looked upon as model citizens. 

The rap is: Some of them use less-than-scrupulous tactics to encourage doctors to prescribe expensive drugs… even to patients who might not get extra benefit from a specific drug. Or, in the case of opioids — which got pushed really hard — might cause harm. And free samples are part of that process. 

So, some providers won’t meet with sales reps at all. Some health systems don’t allow any of their staff to meet with them. 

But you don’t have to approve of how pharmaceutical companies do their business to take advantage of John’s suggestion. And neither does your doctor. 

John says, to get free samples, your doctor might not even need to talk to anyone. 

They can just make a request online, at the manufacturer’s website. John says it definitely happens. 

John: So even with providers or doctors that I’ve never seen in my nine years, I know that they’ve gotten samples before. 

Dan: But here too, there will be limits. 

John: Some manufacturers don’t even do samples. So it really varies a lot. Dan: But a lot of these samples do exist — 

And the idea of using them as a stopgap while you fight to get your insurance to pay for the meds you need — I had never thought of it until we asked you, our listeners, for your tips.

And you also sent us this: Could a local clinic supply the meds you need for a price you can actually afford? That’s next.. 

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health issues in America. Their journalists do amazing work. We’re honored to be their colleagues. 

OK, a whole new kind of expert here. Like Jeanne, who we heard from earlier. Cristy Gupton also lives in North Carolina. She works as an independent employee benefits designer. You’re probably like, what the hell is that? Here’s how she describes her work. 

Cristy Gupton: Imagine you’re a kid in high school, in shop class, and your teacher puts an old engine on the table, and says, take it apart and put it back together again and make sure it works. 

Dan: Except, the machine is a health benefit program for workers. And– back to the shop-class metaphor — Cristy says she’s the real gear-head in the room . 

Cristy Gupton: By the time I put the engine back together, it works twice as good, but at half the cost. 

Dan: Cristy says she does it by ditching expensive, off-the-shelf parts — standard insurance policies from big companies — for custom solutions. It’s a WHOLE THING, and super-interesting, and worth going into. 

For now, she’s got one big tip that *some* of us could use to get access to meds at super-low prices. Basically it’s this: Look for a community health center that offers a sliding scale. They can get drugs at extremely low prices, through a federal program called 340B. 

How low? 

Cristy Gupton: The drug Humira is one of the most prescribed drugs in America. And the list price is probably somewhere in the neighborhood of 5,000 a month. But a 340B covered entity could purchase it for a penny. 

Dan: So we checked, and actually: Humira’s list price isn’t 5,000 dollars. It’s 7,000 dollars. But YES, a 340B clinic can get it for a penny. Now, they don’t get every drug that cheap, but..

And look: although this is all very much worth knowing about, it’s not guaranteed to work for you. 

340B is complicated in all kinds of ways. Here’s my colleague Emily Pisacreta asking Christy about it. 

Emily: Help me understand what 340B is. 

Cristy Gupton: I’ll give you my best, um, like only know enough to be dangerous answer. 

Dan: After checking some actual experts, here’s what we think you need to know: 

A federal law from the 1990s — section 340B of that law — basically requires drug-makers to give some hospitals and health centers that serve low-income folks super-duper discounts on meds. 

Those discounts don’t always get passed along to patients. The feds say hospitals and clinics can take a profit, to subsidize their other work . 

But the rules say: community health centers DO need to make drugs affordable to people with lower incomes. Specifically, to people who make less than two times the federal poverty level. 

For 2025, that’s just over 64 thousand dollars for a family of four. Not a lot. 

But it’s a lot of people: More than 28 percent of Americans qualify. And some clinics may have sliding scales for people with higher incomes than that. 

So: There’s a search tool. We’ve got a link wherever you’re listening to this. Find a clinic in your area, call them, and see what the deal is. 

One last thing to know: You’ve gotta actually be a patient at the clinic in order to use this program. And actually, if you meet the income requirements, all the clinic’s services are gonna be super-subidized. 

But if you don’t want to engage too deeply with the clinic– don’t want to switch over all your care to a new team — Cristy says, in her experience, you may not have to.

Cristy Gupton: It can be as loose as they just have a virtual visit. I mean, that’s pretty simple. 

Dan: Again, we’ve got a link to the search tool for finding a health center near you. Which of course…near you… not everybody is gonna have. Your mileage may vary, literally. But is it worth checking? Yeah, I think so. 

OK we’ve thrown a LOT at you. I know, I know. And we do have one more set of expert tips. From someone we are really glad to have met. So here’s Erika — and her expertise is part of a lifelong project. 

Erika: You know, as a child with Type one diabetes, I had a very dysfunctional household and I had to take care of myself from a very young age. I have learned that the skills that I developed as a child with a chronic illness are transferable into a career to help people be taken care of. 

Dan: So now, she works as a patient navigator– a kind of case worker, at a hospital in rural Oregon. 

When my colleague Emily talked with Erika, they bonded a little. 

Emily: I live with Type One Diabetes and I really wish that I had had a patient navigator, um, when I was diagnosed. 

Erika: Yeah, I wish I had me as a patient navigator too. 

Dan: Most of the patients Erika does work with are managing chronic conditions and other serious health problems, under tough circumstances. 

Erika: For example, let’s say a patient has an amputation and they’re told on discharge to keep it elevated and keep it clean. Well if they’re living in their car, that can be a challenge. So in that case, case management would try to find them a hotel for a couple weeks. 

Dan: And of course, one of the most common problems she tackles: helping people get their meds at prices they can afford. 

Erika: There are weeks where that’s all I’ll do.

Dan: For insured patients, Erika he starts with drugs-and-insurance 101: Helping them figure out which drugs their insurance covers, at what price to them, and coaching them before they call their insurance company. 

Erika:I offer to be on the call with them if they want. And I will tell you right now that we’re gonna be on hold with that insurance company for 30 minutes 

Dan: Yeah, that sounds familiar. Also, for some patients on Medicaid, Erika runs interference with bureaucracies. 

And, when there’s no way that insurance will make the right drugs affordable for her patients– including folks with no insurance at all– Erika helps them explore one of the options she wrote in to us about. 

“Patient Assistance Programs” based on income. Some are from manufacturers, others come from private foundations. 

Erika: It’s such a matter of somebody knowing who to ask and where to get the stuff. 

Dan: And there are websites to find this kind of thing — we’ve got links and guides for you — and she says the applications aren’t complicated. 

But the people she works with, they need extra help. 

Erika: A lot of my patients don’t even know how to use a computer or to get onto the internet, or they don’t have smart phones, they just have cell phones. So a lot of them, I meet with them. I take my laptop, and we do an online application. I help them fill it out. 

Dan: And then hope it works. Some programs only give out so much assistance per year, so not everybody gets help. 

Erika: It’s a frustrating fight. I feel bad that people have to wage this, you know, to get what they need to be healthy. It’s, it’s not like people are asking for BMW or new clothing. People are asking for, oftentimes medications they need to keep themselves alive. It’s, it’s like asking for oxygen. Like what if you were told you you couldn’t afford oxygen? That’s the way people feel sometimes.

Dan: And that’s why, even though Erika wrote to us about practical specifics, it’s her approach, her presence that we especially wanted to share with you. 

Erika: I advised all my patients to get a tattoo that says, be persistent. I mean, seriously, I don’t expect them to get tattoos. But as a patient who manages a chronic condition, you just have to be. 

Dan: Oh yeah. The ongoing burden of dealing with all this, it’s a bear. And it came up again and again when you wrote in to us. 

Erika: Yeah. Stress management, whew. 

Dan: For Erika’s patients, and for herself too. 

Erika: I have to remember to like, stop, step away, do some breathing. And these are things I teach to my patients a little bit too. Like, okay, let’s stop and do some breathing together on the phone. Okay. 

Dan: She calls her strategy “self compassion.” It’s about helping people see how much they’re already doing. 

Erika: I encourage people to take a moment and appreciate that about yourself. Okay? you’ve been on the phone with your insurance company for 30 minutes. 

You’re trying to get this done. You really need to appreciate that you’re doing that for your health. For your health. Feel good about that, at least. 

Dan: You are taking time to listen to this podcast. We are here, right now, together, doing our best. 

For the practical lessons — all the things to try, that may or may not work — we’ve done our best to write them down for you, and organize them so they’re useful, in our First Aid Kit newsletter. Four installments. 

You can find those newsletters — and these episodes — at Arm and a Leg show, dot com, slash, drugs. 

That’s the address where we first asked you to share what you’d learned by walking through this maze. Now we’re inviting you to come and see what we’ve learned from you.

Arm and a Leg show dot com, slash drugs. There’ll be a link wherever you’re listening to this. 

And you’ll find one more thing there, too. 

To honor the endless and ridiculous process that we sometimes have to go through to get our medicines… my colleague Claire Davenport, who has led the reporting for so much of this series, made an endless and ridiculous song. Well, with the help of an AI. Stay tuned after the credits for a little taste of that. 

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

Till next time, 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 Lauren Gould. 

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. 

An Arm and a Leg is Distributed by KUOW — Seattle’s NPR 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 Arm and a Leg show, dot com, slash: support. 

And NOW….a little treat. 

So: At one point, we were like, “What if we could make like a jingle to help people remember all the tactics we’re talking about?” 

But when our producer Claire tried actually writing one, with AI supplying the melody and the band — it just kinda showed us how endless and ridiculous the list actually is. 

And we found that just adorable. Here’s how it starts… 

AI Song: I am a prescription – medication. And as you might know, I’m Expensive in this nation. Getting me can be confusing. And often quite scary. Since when it comes to meds. The prices can vary. Luckily, there’s some tricks you can try. When you’re in this situation and the price is high… 

Dan: Alright, I think you get the idea — and if you want more, it’s all at Arm and a Leg show dot com, slash, drugs. Along with these podcast episodes and First Aid Kit newsletter installments, and everything we hope you’ll actually find useful. Thanks.

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

For more from the team at “An Arm and a Leg,” subscribe to its weekly newsletter, First Aid Kit. 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).

Dozens of listeners responded with their stories, including Bob, who is being identified only by his first name to guard his family’s privacy and whose daughter has epilepsy. When Bob changed jobs, the price tag for his daughter’s medication went through the roof. In this first installment of a two-part series, “An Arm and a Leg” shares lessons from Bob’s experience navigating a maze of pharmacies and insurance companies to get his daughter the medicine she needs.

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. 

When I tell friends that we’ve been working on a series about how to pay less for prescription drugs, I find myself telling them about a guy named Cole Schmidtknecht. 

In January of last year, Cole went to a Walgreens in Appleton, Wisconsin, to get refills on the medication he used to control his asthma. 

He’d been taking it for years, and he expected to pay about seventy bucks. 

But — this is all according to a lawsuit filed by Cole’s folks– the pharmacy said his insurance didn’t cover his medicine anymore. He’d have to pay more than 500 dollars. 

He left without it. 

A few days later, he had a massive asthma attack. He died after a few days on life support. He was 22 years old. 

In their lawsuit, Cole’s folks say the pharmacist at Walgreens could’ve told him right then and there about comparable drugs his insurance would’ve paid for. 

This is the kind of information we all need, all deserve. 

In surveys, a quarter of Americans say they’ve skipped taking meds in the past 12 months because of cost. 

And maybe we can put a little dent in that. 

Because there are actually a lot of things to know, and a lot of things– a lot of strategies we can try when it looks like our medicine is gonna cost an arm and a leg. 

Over the last few months, you’ve actually been helping us learn about more of these strategies, and here we’re gonna start tying those lessons together. 

Back in February, we asked you, our listeners, to tell us how you’ve managed when your prescriptions got really expensive.

And we heard back from a LOT of you. 

Person 1: We went to go pick up the prescription and we were like, holy moly, that is so expensive. 

Person 2: We’ve been given estimates of $30,000 a dose 

Person 3: The pharmacist would burst out laughing every time I showed up 

Dan: And … you told us what you did next. The strategies you learned for fighting back, and sometimes winning. 

A lot of those strategies, we knew about. Some, we were like, whoa, that’s a new one on us! 

I mean, with all of this, there’s no guarantee that your particular problem has a good solution. 

Our whole system sucks. These are patches, workarounds. 

Cole’s dad– he now works full time trying to change the whole system of how we get charged for meds. Which is a must– and is gonna be a long haul. 

But in the meantime, these patches and workarounds — honestly, they can really help a lot of people. 

So here’s what we’re gonna do. 

We’re gonna break down what we’ve learned into chunks you can digest, and share. We’re gonna take TWO episodes of this show to do it. 

And we’re NOT expecting you to take out a pen and paper: We’re gonna share everything in writing, in our First Aid Kit newsletter. Including stuff that doesn’t fit on the podcast. 

It’ll take four installments. I’m telling you, there’s a lot. 

Meanwhile, we’re starting here with one guy’s story– a listener named Bob. 

Bob’s journey is going to help us show you — well, the journey. How the trial and error works. The obstacles.

And we’ll show you the strategies Bob worked to get through those obstacles. Including a tool he developed, that we’re gonna share with you. 

And I’ve got some help telling Bob’s story. Our producer Claire Davenport did most of the reporting for this episode. Hey, Claire! 

Claire: Hi, Dan! 

Dan: You’re gonna tell us Bob’s story, and then at some points, we’ll zoom out — like tour guides, pointing out the big lessons 

Claire: Yep! I’m super excited to get into it. 

Dan: Let’s go. 

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

Okay Claire, where should we start with Bob’s story? 

Claire: First, let’s meet Bob. He’s got a lot going on… 

Bob: Between me and my wife, we have five kids and uh, three dogs, and two cats and two lizards. 

Claire: Did you ever anticipate you’d be a dad to so many, Bob: Nobody plans to have many kids, Claire. 

Claire: By the way, Bob asked us just to use his first name for privacy reasons. But we’ve checked out his story — he sent us lots of documentation. 

Bob’s journey here begins in 2019 — the first day of high school for his daughter, Mary. 

After she got home, he wanted to hear how it went, so he called her.

Bob: We were talking and, I would say she’s being a little spacey, but, uh, talking to a 14-year-old on a cell phone, right? 

And, and I’ll never forget this, she, we were talking and all of a sudden she said, the ceiling looks so funny. 

And then, um, and then she was sort of gone. 

Claire: At first, he assumed Mary had just set the phone down — maybe to talk with one of her sisters. 

Bob: I text her mom and say, Hey, I was talking to our oldest daughter, and, uh, she just sort of disappeared now she’s not answering the phone. Can you go check on her? 

And I still get even choked up talking about this. But, I get a text back in about two minutes saying she’s unconscious. 

Claire: They end up calling an ambulance. Bob is scared. 

Bob: All kinds of thoughts were running through my mind in terms of what could possibly have happened here. Epilepsy was not one of them. 

Claire: Epilepsy. It’s a condition that causes seizures. And Mary was having one while her dad was on the phone with her. 

Mary and her folks worked with a pediatric neurologist. They started trying out different medications and dosages. 

Bob: We were told, we’re going to figure out what the right medications are for her. This is gonna be a process. 

Claire: And it was. It took years of trial and error: they had to experiment with different drug combinations. 

Finally they landed on the right mix. That mix included a drug called Clobazam. Bob: And that seemed to be the magic bullet 

Claire: A magic bullet with a reasonable price tag.

Bob: the three drugs she was on were well under a hundred dollars for all three of them together 

and she went over a year without a seizure. 

(beat) 

Bob: And then I changed jobs. 

Claire: Which had an unexpected consequence. As Bob learned when it was time to refill Mary’s prescription for Clobazam. 

Bob was used to paying around 15 dollars. 

Bob: This time the pharmacist comes out and says, Hey, your, your Clobazam is gonna be $500. 

Claire: Ok, so…Dan, let’s take a step back. Bob changed jobs, and suddenly Mary’s Clobazam is $500. Because… 

Dan: Bob’s new job meant… a new insurance plan for the family. And… 

Claire: Every insurance plan has its own list of how much you pay for which drugs. And which drugs they don’t cover at all. That list is called “the formulary.” 

Dan: That list, that formulary, is based in part on business deals that plans and drug-makers hash out behind closed doors. 

Claire: So when you change jobs, change insurance: the difference between what’s on one formulary and what’s on the next: It can be… 

Dan: unpredictable at best. 

And even if you don’t change jobs, your job may change your insurance plan. That happens a lot. 

Claire: And even if your insurance plan doesn’t change, that plan’s formulary can change from year to year.

Dan: So, Claire, this seems like the first big lesson from Bob’s story — the first big obstacle: The deal can change on you. And MAYBE, in this new deal, your insurance offers another drug they say is just as good. 

But it may not be just as good for YOU. That’s a thing. 

Claire: And it was definitely a thing for Bob and his daughter Mary. Remember, they had spent YEARS of trial and error, finding the perfect regimen. 

Just switching to whatever random thing the insurance company approves, that’s not on the table. 

So first, Bob thinks, hey maybe there was just some kind of mistake here. New insurance company, right? Maybe the pharmacy got confused. Bob calls his insurance just to ask, and they’re like: 

Bob: Oh, well that medication, , is only covered for a certain type of, of epilepsy 

Claire: Which isn’t the type they think Mary has. They’re not gonna cover it. So, now we have arrived at the point where Bob busts out his first big strategy: Haggling with his insurance. They’ve said “no,” but that doesn’t mean he has to accept this as their final answer. 

Dan: Yep, we heard from so many people — have heard over the years: This is a whole dance, a whole fight. 

Claire: Yep, and Bob’s gonna take us through it. In fact, in this very same phone call where his insurance company said they wouldn’t cover Mary’s Clobazam, they basically invited him to this dance. They said: 

Bob: Well, there’s a prior authorization that can be filled out. We’ll send that to your doctor. 

Dan: There’s a prior authorization for that! We’ll send that to your doctor!” The way Bob says that, it sounds like the insurance person was so cheerful. Making things sound so easy. 

But prior authorization…

Claire: That’s a hurdle, a hoop for Bob — and Mary’s doctor — to jump through. 

Dan: This will be familiar to a lot of folks already, but: Prior authorization… PRIOR: 

Claire: Before the insurance company will pay for Mary’s Clobazam, Dan: They have to AUTHORIZE it. 

Claire: her doctor has to make a case that she needs this particular treatment — and the insurance company has to decide the argument is good enough. 

Dan: We see it all the time. 

Claire: Bob isn’t thrilled by this requirement. 

Bob: Seems unnecessary. This is a, you know, board certified pediatric neurologist who’s been seeing this patient for years. 

Claire: And who took her through a whole long trial-and-error process to find the right meds. 

Dan: Because of Bob’s confidentiality, his insurance company said they couldn’t respond directly to his story — fair enough. But a lot of the time, Insurance companies say: Hey, we’re just discouraging waste with these prior authorizations! Sometimes doctors do just prescribe an expensive thing, when something cheaper would be just as good. Okay. 

But a lot of patients say, like Bob would: My doctors and I had already DONE all this checking. 

Claire: Bob gets form sent in, but now he’s got another problem. The insurance company needs time to evaluate the prior authorization. And Mary needs her drugs right now. 

Bob: She starts to panic a little bit of like, Hey, I, I need my medication. If I miss a couple doses, I could have a seizure. 

Dan: That’s a bad problem.

Claire: Luckily: Bob found a way to get Mary’s Clobazam for less than five hundred dollars a week. We’ll get into that a little later. 

But for now, just to note: It’s lucky he found that workaround. Because when Bob calls to check on the prior authorization– PA for short– Well, here’s how he says the conversation went… 

Bob: ‘Yes, we got the PA information. It was denied.’ 

‘It was denied? What, uh, why was it denied?’ 

‘Oh, well, again, it looks like it’s only approved for this one particular type of epilepsy.’ 

Claire: Which was just what they’d said before. Bob gets ready to appeal. 

And he says this is getting to him. When we talked, he mentioned a lesson from this show: 

Bob: I think you guys recommend this of like not losing your cool with the customer service people, in the insurance companies. 

Dan: We do. Everybody says: It really helps. 

Claire: And everybody knows. It’s not actually always possible. Here’s what happened the next time Bob calls his insurance. 

Bob: They asked me, oh, how’s your daughter doing? And I just remember saying like, you don’t care how my daughter’s doing. She’s terrified. She’s gonna be walking to class and have a seizure because she doesn’t have the medication. So don’t give me this BS about how’s my daughter doing. 

Dan: Bob seems like a pretty level-headed guy. 

Also — we’ve kind of withheld this until now– but Claire, you told me Bob works in health care, so he knows a little more about this world than most of us do. Insurance, appeals.

He’s got the advantage, in terms of keeping his cool, of not being in totally foreign terrain. 

Claire: Yep, and he says he recovered his cool pretty quickly. 

Bob: I pulled back at when I realized what I was doing. Like this isn’t this person’s fault. They’re just probably reading a script. 

Dan: But this is kind of the lesson here: No matter what kind of advantages you have, this stuff is so frustrating. Anybody can lose their cool. The key — and maybe we should do a whole show on this — is recovering. Because you’re gonna have to get up and go again. 

Claire: Yeah, and we’re just getting to the most frustrating part. Dan: Right. 

Claire: After more than a month– and two rounds of appeals– Bob says Mary’s Clobazam finally gets approved. 

Dan: And this is the frustrating part because… 

Claire: Insurance will cover it now. But they tell him his share is going to be $150. Remember, Bob said under his old insurance, it used to only cost $15. 

Bob: So 10 times the price now, plus the price you know, of the other medications she’s on. 

Dan: Yep. All this waiting, all this fighting, everything. And it’s ten times more than he used to pay under his old insurance. 

Claire: It’s less bad– this insurance originally was gonna make him pay more than 500 bucks. But yeah. Not great. 

Dan: But Claire: this is not the end of Bob’s story, right? 

Claire: Not even close. 

Bob: What this sparked us to do is to look at, well okay, if it’s not going to get approved, what are the other options?

Claire: We’ll get into those options– after the break. 

Dan:This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health issues in America. Their reporters win all kinds of awards every year. We are honored to work with them. 

So, Bob has worked the strategy of Haggling With His Insurance. And he won. Kind of. Except that winning still leaves him paying ten times more than he used to. 

Claire: Yes, and now he’s going to work a whole different strategy: Ignoring his insurance. Because there can be better deals elsewhere. Bob starts with GoodRx. 

Dan: Lots of people know it — it’s a website where you tell them what drug you need, and they’ll show you deals — discounts — at local pharmacies. 

Which does not always work. Saving 50 percent on a thousand dollar drug does not make it affordable. I know people who get mad when you mention it. 

Claire: Bob says he got mad because of who recommended it to him: a rep from his insurance company. 

Bob: Like you’re my insurance company. Why? You’re, that’s what I pay you for. 

Claire: Right? he pays them premiums so he can pay less for health care, including medicine. But he didn’t write it off. And he says now, it was actually useful: even though he knew about GoodRx before, he wouldn’t have thought to go there. 

Bob: like I almost, and this is gonna sound crazy, but I almost thought of GoodRx as like Medicaid. Like, I think I thought of it as like, oh, well that’s what you use if you don’t have insurance. 

Dan: Interesting! And in one sense, he wasn’t wrong: When you use a GoodRx discount, you can’t use your insurance too. But it turns out, even when you have insurance, GoodRx can be worth looking at.

Claire: Yes, and here’s what makes Bob’s story stand out — the reason we wanted to really dig in. It’s what he did next. Because he didn’t just look at GoodRx. He started exploring a whole world of options. Actually, worlds. 

One is the world of sites LIKE GoodRx. 

Dan: Ooh, I’m googling “sites like GoodRx” — here’s SingleCare, RxSaver, BuzzRx… 

Claire: Yep, and for any given drug, each of these sites may show you different prices. So now that he was looking at this world, he started mapping it. 

Bob: I created this spreadsheet that had each of those options, the different medications and then the different pharmacies and where we could kind of get the best price for things. 

Claire: And: Once Bob started looking at THIS outside-insurance world, started exploring others. Like Cost Plus Drugs. 

Bob: And –What was really sort of eye-opening to me is they did so much better than our insurance company did. 

Dan: We should really talk about Mark Cuban Cost Plus Drugs, to use its full name. It’s pretty different. 

Claire: Right. The celebrity owner. 

Dan: Mark Cuban is basically famous for being rich. Like he owns the Dallas Mavericks basketball team. 

Claire: And he’s spent 15 years on the reality show Shark Tank. [THEME] 

Dan: It’s like American Idol for startups. People pitch their business to investors who might offer to buy in, on camera. 

TV announcer: Mark Cuban has just made the largest offer in Shark Tank history.

Mark Cuban: Lemme ask you a question. If I offered you $30 million for the company, would you take it? 

Claire: All of that, but the celebrity factor isn’t really what makes Cost Plus different: The company buys meds direct from manufacturers, and adds 15 percent to their wholesale cost. 

Dan: Plus shipping fees, and five bucks for “pharmacy labor”. Claire: Bob added CostPlus to his spreadsheet. And he liked what he saw. Bob: It’s very transparent and super low cost. 

Claire: He asked Mary’s doctors to transfer two of Mary’s prescriptions. 

Dan: But not all of them. Cost Plus doesn’t carry everything. For one thing, they mostly only carry generic drugs. 

Claire: And — what matters in Bob’s case: they don’t carry controlled substances. Nobody sells them online because it’s illegal to ship them. And Mary’s Clobazam? It’s a type of controlled substance: They’re called Benzos. 

Dan: Like Valium and Xanax. 

Claire: So for Clobazam, the best price he can find is 85 bucks, using GoodRx at Walmart. 

Dan: A LOT less than his insurance was gonna have him pay. go spreadsheet! Head to WalMart, use GoodRx there. 

Claire: Just one thing: Mary’s off at college now, and there’s no Walmart right nearby. And Mary, doesn’t drive. 

Bob: Well, she has epilepsy. She can’t have a driver’s license, so it’s uh, she can’t drive anywhere. Right? We had a Walmart near our house at home. I’m two and a half hours away from her. 

Claire: And he says he made the drive.

Dan: Dad of the decade. For ALL of this. Bob fought down the insurance companies. He shopped around. He made the spreadsheets. And he made a bunch of round trips to his daughter’s college. 

Claire: Yeah, Bob rules. But he’s not exactly happy about all of it. 

Bob: I pay an insurance company every month outta my paycheck for prescription drug benefit that I don’t feel like I get, right? Like I’m having to go outside of that in order to get them the medications that are nothing special. Like, clobazam has been on the market since like the seventies. 

Dan: Yeah, fair. 

Claire: But he may be game to take the win on that Dad of the Decade award. 

Bob: Would say I did a magnificent job of, you know, staying, staying calm, and hiding that stress from Mary 

Mary: I assumed he was gonna figure it out. Um.. [laughs] Bob: Total confidence in me, right? [laughs] 

Dan: That’s Mary? 

Claire: That’s her. 

Dan: OK, so let’s review these lessons: Yes, you can fight your insurance, but you may get a better deal going outside of it. All of which suck — this was a LOT of work, and not a total victory — but is better than NOT knowing any of this. 

Claire: Yes. And this story ends up going full circle. Back to the first lesson. The deal can change on you. For worse. Or for better. 

Bob changed jobs again recently — so, new insurance. 

And actually, it’s good this time! Under Bob’s new insurance, Mary’s clobazam is … back to 15 dollars. 

Which she learned when she went to pick it up recently.

Mary: I was like, this is amazing. Definitely a weight lifted off my chest when I saw a two digit number. 

Dan: And speaking of how the deal can change on you… this reminds me: went looking at GoodRx recently, and saw a new price for Mary’s Clobazam there, too. 

Claire: Yes. The lowest price on GoodRx is now: Thirty dollars, at a CVS she can walk to. 

I showed the current GoodRx prices to Bob and Mary, and what struck Mary at first was this: how different the prices at different pharmacies were. 

GoodRx said CVS had Clobazam for 30 dollars but… 

Mary: It said Walgreens was like over $300.over. It was like 300 and then everything else is between 25 and 35, maybe 40, but I don’t understand that. 

Dan: I KNOW! Man, I had this exact experience a few years ago. I was like, WHY ARE THESE SO DIFFERENT? 

I ended up learning about companies called pharmacy benefit managers or PBMs. They’re the ones that actually decide which drugs our insurance covers, and how much we pay for them. 

We did a WHOLE episode about them (it was SOO complicated, but I learned a huge amount) 

Claire: So we are NOT gonna get into here, but we’ll leave a link in the show notes in case people want to nerd out. 

Because today we’re just looking at how to get things to work better for YOU. 

So: Mary was curious about the 300 Walgreens price from GoodRx. And by the way, she’s also furious with the whole system. 

But here’s one thing she was filing away: She could now use GoodRx to get Clobazam for 30 dollars at CVS.

Mary: It was not like that a couple years ago. And it is reassuring to know, like, if I show up and it’s, you know, $150, there are places that would have a price I could actually afford. 

Dan: Let’s take that glass half full and add a little bit to it. Because in addition to their story, Bob gave us one more thing: His spreadsheet. And we’ve been adding to it. 

Claire: Yep. We’ve got a template you can download — it’s in the show notes for this episode, and it’s in our First Aid Kit newsletter. And in addition to GoodRx, and some similar sites, and CostPlus, we’re adding lines where you can log prices from a world Bob didn’t explore. 

Dan: I mean, he’s just one guy. 

Claire: So, one thing we’re adding: ordering from pharmacies outside the U.S. 

Drug prices are lower basically everywhere else, and some pharmacies in Canada will ship to the U.S. To avoid shady internet stuff, a tool called Pharmacy Checker will steer you to ones that are above board. 

Dan: Another addition: Manufacturer coupons. SOMETIMES, especially with brand-name drugs, pharma companies offer coupons that can make drugs affordable. 

Claire: There are a lot of caveats with those too. 

Dan: Oh man, tell me about it. But not right now. There are TOO MANY possible workarounds, too many caveats, for any one person to keep in mind. That’s why we are doing this across two episodes and FOUR installments of our First Aid Kit newsletter. 

It’s all exhausting, and there’s no guarantees. But it’s all worth knowing. And with help from Bob, and a lot of listeners who chimed in, we are boiling things down and putting them in forms we hope you’ll find useful. 

As always, DEFINITELY please let us know how the stuff we provide can be even better. 

You can find the First Aid Kit newsletter at arm and a leg show dot com, slash first aid kit. New installments there every week. We’ll have a link wherever you’re listening to this.

And in our next episode, we’ll dive into some tips that really surprised us, from folks who do this kind of thing for a living. 

Erika: I guess in my heart of hearts, I want everyone to be taken care of. Dan: For now, Claire: Thank you so much for bringing us Bob’s story. Claire: My pleasure! 

Dan: And we’ll be back with the second episode in this series in a few weeks. Till then, take care of yourself. 

This episode of An Arm and a Leg was produced by Claire Davenport with help from me, Dan Weissmann, and Emily Pisacreta. And our new intern: Welcome Lauren Gould! It was 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. 

An Arm and a Leg is Distributed by KUOW — Seattle’s NPR 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 arm and a leg show, dot com, slash: support.

Thanks! And thanks for listening.

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

For more from the team at “An Arm and a Leg,” subscribe to its weekly newsletter, First Aid Kit. 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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Eugene Litvak.

The Soviet intelligence agency and the children’s hospital have each separately looked to the Ukrainian émigré with a PhD in mathematics for help. He turned down the KGB, but Litvak saved Cincinnati Children’s Hospital more than $100 million a year. 

For decades, Litvak has been on a mission to save U.S. hospitals money and improve the lives of doctors, nurses, and patients. He says he has just the formula to do it.

Prominent experts vouch for his model, and he has documented impressive results so far: financial savings, fewer hospital-related deaths, lower staff turnover, and shorter wait times. Still, Litvak and his allies have struggled to persuade more hospitals to try his method.

Host Dan Weissmann speaks with Litvak about his unique life story, how he found the fix that he says could revolutionize American hospitals, and why he won’t stop fighting for it.

Credits

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

Dan: Hey there. Mark Taylor is a reporter, and when he started covering health care in the 1990s, the beat wasn’t his first choice.

Mark Taylor: I thought it was a punishment. I thought, I don’t know anything about healthcare. I was bad at science, I was bad at math. I didn’t understand any of this stuff, but I just was determined not to fail at it. And I dove into it head first and my wife said, you know, you used to read novels in bed and now you’re reading the CDCs mortality and morbidity report.

Dan: About twenty years in, he picked up some medical journals — like you do — and looked at some studies about work by a guy named Eugene Litvak.

Mark Taylor: I started reading these and going, wow, that’s a good story.

Dan: Litvak was a math PhD, with a background in operations management, systems engineering. He’d spent the first chunk of his career making telecommunications networks more efficient and reliable.

Many years later, One hospital that had implemented Litvak’s program had saved more than a hundred million dollars a year.

But the results were about more than money. Mark Taylor kept reading…

Mark Taylor: Reduces mortality rates in-hospital. That’s a good story. Improves nurse retention. We’ve got a nursing shortage. Reduces waiting times in ER and patient boarding.

Dan: Patient boarding sounds nerdy, but: We talked about this a couple of episodes ago, when we looked at the new HBO/Max medical drama “The Pitt.”

When hospital ERs get crowded — and way less effective — it’s generally because of crowding upstairs.

ER patients who need a bed upstairs can’t get one, so they wait in the ER. And clog it up. Wait times get longer. Medical mistakes happen. People die. 

On “The Pitt,” and in lots of hospitals, this gets treated as a fact of life.

Hospital administrators say they can’t afford to build the new wings or hire extra nurses to meet peak demands.

But Litvak’s work showed: They don’t need to.

Because — it turns out — random ER visits don’t cause those peaks.

Scheduled surgeries do. They get bunched up on certain days. Un-bunch them, and the peaks get smoother.

Nurses and doctors get less burned out. Fewer patients die. Hospitals waste less money.

In other words, Litvak’s work addressed some of the biggest problems Mark Taylor had been writing about for decades.

Mark Taylor: There’s a solution here. It’s been proven to work, and it’s been validated in the best medical journals in the country and in the world. How come this isn’t in every hospital?

Dan:  That was ten years ago. It’s still a good question. 

Mark wrote some newspaper stories about Litvak’s work, starting with one in the Chicago Tribune, and eventually started working on a book.

It came out in 2024, and it’s called “Hospital, Heal Thyself: One Brilliant Mathematician’s Proven Plan for Saving Hospitals, Many Lives and Billions of Dollars.”

By the time Eugene Litvak started working with hospitals, he was in his mid-40s. He had grown up in the Soviet Union, where he earned a PhD in math and worked as a systems engineer.

His career there came to a halt when he asked for an exit visa — and his request was refused for almost a decade. There was a word for people in that predicament, lots of them, like Litvak, Soviet Jews: refuseniks. 

Eventually he got to the U.S. — where he’s now spent decades trying to get hospitals to try his methods.

Eugene Litvak: I recently started telling people that I am a double refusenik, for 10 years refusing for the exit visa in Soviet Union, and now for 25 years in healthcare decision makers.

Dan: He’s not giving up any time soon. And he thinks eventually hospitals will come around. He thinks they’re gonna have to.

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 something entertaining, empowering and useful.

Eugene Litvak was born in Kiev in 1949. Mark Taylor reports in his book that Eugene Litvak’s work in engineering and math attracted international attention in the 1970s.

Litvak also faced frustrating obstacles. A controlling boss. Semi-official antisemitism.

But what finally spurred him to try to leave the Soviet Union was an offer. From the secret police– the KGB. 

Eugene Litvak: And they were so nice, you know, like you’re talking to your long lost brother. They said, you have a lot of friends. You communicate with many people. How about you work for us?

Dan: Eugene says the offer terrified him. Because he knew immediately he couldn’t accept it.

Eugene Litvak: I would not be any longer in peace with myself. In addition to that,  I can tell you my father probably would stop talking to me if he would learn that I did something like that. So, these two factors –  look,  I didn’t think whether I should accept it or not. I didn’t think about that. The only thing that was immediately in my mind–  how can I avoid it to minimize the consequence for myself?

Dan: As he told Mark Taylor, he didn’t face immediate consequences for declining, but he knew he’d always be at risk. He and his wife decided to leave.

As they expected, they got fired from their jobs the day they applied for exit visas.

He says they were prepared to wait out a process that they figured would take months, maybe a year.

But their timing was bad. While they were waiting, in December 1979, the Soviet Union invaded Afghanistan. The Cold War got hotter, and exit visas basically stopped getting approved. 

Eugene Litvak: So we, and many thousands of others, became victims of that.

Dan: Eugene says for most of the next decade, police and the KGB called him in, searched his house, threatened him with prison — while he and his wife worked basic jobs: she washed floors in a factory. He delivered telegrams.

When they finally got to the U.S., in 1988, with Eugene’s parents in tow, Eugene’s job prospects weren’t much better.

He says he had contacts with well-known scientists, but not great English. He worked in a hotel gift shop, then behind the desk.

And practiced his English by cold-calling stores from the Yellow Pages.

Eugene Litvak: Like Home Depot. Asking may I buy, you know, the air conditioner? And then the supermarket. The CVS. I was doing that on a regular basis until people started understanding what I want from them.

Dan: He eventually got some consulting work. And he found his calling — his obsession — bringing his training as an operations engineer to U.S. hospitals — when his father’s health went downhill.

Eugene Litvak: I saw the failures in operations at the hospital by spending a lot of time with my father.

Dan: And his chutzpah — and his persistence — all of that, really shows itself in what he did next:

Eugene Litvak: I sent a letter actually to every hospital president in Massachusetts, offering my services to help. 

Dan: No takers. No responses. But in 1995, the vice president of a big local hospital, Mass General, gave a lecture about how new market conditions meant hospitals would need to get more efficient.

Afterwards, Litvak stepped up, introduced himself– and got an invitation to drop by for a chat. In that meeting, his new pal the Vice President gave him a small assignment — one that Eugene didn’t get to finish. 

Eugene Litvak: He interrupted me before even implementation. He said, we have a more important project and that is operating room.

Dan: Operating room. Surgeries.

Eugene Litvak: So that’s how it started.

Dan: A doctor named Mike Long, who ran logistics for the hospitals surgeries, had been pushing to get things more efficient.

Some days, surgical patients crowded the hospital, so doctors and nurses sweated through expensive overtime. Others, the place was quiet and the hospital lost money staffing empty beds. Nobody could figure out why. 

Long and Litvak became a team, with two big strengths: One, they were kindred spirits.

Eugene Litvak: As he described it, you know, long lost twins.

Dan: And two, they had complimentary expertise:

Eugene Litvak: He knew healthcare very well, which I didn’t, and I knew operations management, that he didn’t know.

Dan: They dove in together, pulling data, talking to people, and observing. The two of them worked and worked. For months, Litvak watched the weekly 6am meetings where surgeons would set their schedules.

They had a hypothesis: Sometimes more people just showed up in the ER: More broken legs, more burst appendixes. The ER got crowded, and so did the rest of the hospital.

So they searched their data for ways to predict or manage that problem.

And then one day, a totally different answer literally showed itself to them.

This was the 1990s, before PowerPoint. To share their data, they printed charts onto transparencies — plastic sheets for an overhead projector.

One day, in Mike Long’s office, they noticed a couple of these sheets sitting one on top of the other.

One had a line showing scheduled surgeries — more this day, fewer that day. The other had a line showing, day by day, how many hospital beds were full. 

Eugene Litvak: And we look. Wow, it’s almost the same. We put it against the light in the window and they almost coincided. That was an aha moment. 

Dan: When the line showing scheduled surgeries went up, so did  the line showing full beds — crowding. They went down together too. 

Eugene Litvak: It was clear message.

Dan: The question they’d been working on– why does the hospital get so jammed sometimes?

The answer wasn’t random at all. It had nothing to do with random surges in patients showing up in the ER.

The hospital got jammed — and the ER got backed up with patients waiting for a bed upstairs — when there were more surgeries scheduled.

And there was a definite pattern: There were a LOT more scheduled surgeries early in the week, on Mondays and Tuesdays.

He’s taken to calling it “weekday-related disease”

Eugene Litvak: Weekday related disease that manifests on a particular week days. 

Dan: On those days, there was no give in the operating-room schedule, a lot fewer open beds on the wards. When a normal day’s batch of emergency cases showed up– wham. Things got jammed.

I told Eugene: Hearing all this after the fact, it just seems — obvious. You schedule a bunch of surgeries, you’re gonna fill up the hospital, right? He was like, well, yeah.

Eugene Litvak: As one of the hospital’s chief medical officers said, Eugene pointed us to absolutely unexpected event that during the winter we have snow.

Dan: Right, but this hadn’t kind of occurred to anybody before.

Eugene Litvak: No. And the first people reaction was practically calling me names.

Dan: People in the hospital did not want to believe what Eugene’s data showed. 

Which is easier to understand given what Eugene had seen when he observed the surgeons doing their 6 a.m. scheduling meetings for those six months.

Each surgeon basically called dibs on a block of time for each week. And certain blocks were highly coveted: 

Eugene Litvak: Every surgeon wanted to do the surgery Monday morning.

Dan: The intensity of the scramble for those times had puzzled Eugene. He asked his partner Mike Long about it.

Eugene Litvak: I said, Mike, I hear they’re fighting for this morning, block times as they would fight for their spouses. And he said, Eugene, you don’t get it. He said they would rather give up their spouses than the morning, Monday, block time. 

Dan: Would rather give up their spouses than Monday morning block times. There were reasons– beyond just wanting the rest of the week clear.

Like: Surgeons wanted to come in and do their best work when they were fresh from the weekend.

They wanted the early-morning slot for the same reason frequent travelers want early flights: Later in the day, your schedule could get delayed because of some problems that happened earlier.

And if you operated on somebody later in the week, they might have to spend the weekend in the hospital. When, yeah, you might get called in to check on them.

But also: hospitals operate with skeleton crews on weekends. Fewer nurses, less staff around for services like physical therapy. 

Surgeons may have been looking out for themselves, Eugene says, but they were also trying to look out for their patients. And failing on both counts.

Eugene Litvak: They’re the first and foremost victim along with their patients of this mismanaged operation. They’re trying to do their best, but, but the system is screwed up.

Dan: And they did NOT want to hear some engineer telling them when they should operate.

Eugene Litvak: I talked to one of the prominent cardiac surgeon, really talented person. And, he told me, Eugene, how dare you are to teach me when I supposed to operate on my patients. Even my patients do not know when they should be operated on. How can you do that? And I said, okay, uh, your point is well taken. May look at your data, talk to your data people. He said, sure. So I talked to the data people. I came back and I said, look, I would like to be your student. As such, I would like to learn what kind of a disease your patients have that manifests itself every Tuesday 

Dan: And how did he respond?

Eugene Litvak: From that point, he avoided talking with me.

Dan: In his book, Mark Taylor reports that resistance like this from surgeons prevented Mass General from actually implementing Eugene Litvak and Mike Long’s recommendations.

Mike Long retired from Mass General in 2000, and Litvak’s consulting contract ended.

But by then they had compiled enough evidence to start publishing their findings in medical journals. And attracting allies in the field.

At Boston University, Litvak set up a tiny research center with big names in medicine on the advisory committee: Like the CEO of the organization that accredits most U.S. hospitals.

Hospitals brought Litvak in to consult — including the Mayo Clinic and Johns Hopkins. Mark Taylor’s book says they undertook limited projects that achieved impressive results –but never expanded.

And then in 2004 a couple of doctors from Cincinnati Children’s Hospital went to one of Litvak’s talks, and came away… impressed. Litvak ended up talking with the hospital’s CEO, Jim Anderson.

Jim Anderson CCH: And I thought this would be a fun adventure to pursue.

Dan: So he did. The adventure they undertook at Cincinnati Children’s remains Eugene Litvak’s biggest success to date. That’s next.

This episode of An Arm and a Leg is produced in partnership with KFF Health News– that’s a nonprofit newsroom covering health issues in America. Their reporters do amazing work and win all kinds of awards every year. We’re honored to work with them.

As a first step, Cincinnati Children’s Hospital had Eugene Litvak do an evaluation and present recommendations to the lead medical staff.

Eugene Litvak: Vice president, chief of surgery, chief of anesthesia, et cetera, et cetera.

Dan: Eugene’s prescription: Change how you schedule surgeries, spread them out across the week. As he recalls, everybody seemed agreeable, and the CEO Jim Anderson made a proposal on the spot.

Eugene Litvak: So he asked me, Eugene, okay, would you do that for us now to implement what you are preaching for? And I said, no. And he said, how come? I said, because these very people who smile at me would create roadblocks, and I’m not sure I would overcome it. So he look around the room and said, okay, if you face any resistance, you call me directly. He looked at me again and said, would you do it now? I said, absolutely.

Dan: Jim Anderson recalls that part of the exchange a little differently.

Jim Anderson CCH: I remember telling them and said, look, we’re gonna do this anyway. We’d love to have you involved if you’re not. That’s fine. Go away. But, uh, we’re committed.

Dan: However that exchange went, the follow up was real.

With Litvak’s guidance, the hospital reorganized the way it scheduled surgeries– and saved a hundred thirty-seven million dollars a year. They’d been planning to build a hundred-million dollar new tower to increase capacity, but with their new systems, they decided they didn’t need to.

Actually, Jim Anderson told another interviewer: without adding a single bed, the hospital took on more cases, AND wait times for patients went down by 28 percent. Nurses, surgeons, and anesthesiologists reported they were able to take better care of patients.

Jim Anderson says the hospital was making other changes too, but he gives Litvak lots of credit. 

Jim Anderson CCH: Eugene was a wonderful stimulus, to helping us, think outside the box and reorganize and really, uh, be more effective at what we did. 

Dan: And yet, almost twenty years later, he’s had clients here and there. But few institutions have gone as far as Cincinnati Children’s in following Litvak’s advice.

Jim Anderson CCH: It’s been a mystery to me for decades now. I’m astonished by the lack of response. 

Dan: That’s the mystery Mark Taylor stumbled across when he started reading about Eugene Litvak’s work years later. He started calling sources for a reality check.​

Mark Taylor: Most people in the hospital business knew nothing of him, hadn’t heard of him at all. But some of my best sources as a healthcare journalist, told me, you know, this guy is really onto something. and it was like, Jesus, this guy’s right. How come nobody else knows this?

Dan: He started reporting his first story on Litvak for the Chicago Tribune and basically asked Litvak himself: Who are your opponents?

Eugene Litvak: He said, Eugene, I’m health care reporter. I should be objective. You have the names of supporters and coauthors. I would like to know the names of naysayers so I can interview them, and I said, here is what I can do. If you find the one, I owe you a dinner.

Dan: He’s had a lot of time since then. Since that was like what, seven, eight years ago?

Eugene Litvak: Yeah.

Mark Taylor: I talked to well over a hundred sources and I called all kinds of hospital executives, consulting firms, and I couldn’t find anyone who said, a, this doesn’t work. B, his, algorithms are wrong. C this is a fraud. They’re making up details in that.

Dan: So what’s the holdup? In my first conversation with Eugene Litvak, we talked about why more hospitals don’t go with his recommendations– even after they hear about successes at institutions like Cincinnati Children’s.

Eugene Litvak: I’ve been told by other hospital leadership, those are special hospitals. Our hospital is different. Our patients are sicker. Uh, at one hospital, they asked me, it was in South Carolina. They asked me whether I ever implemented that in South Carolina.

Dan: Implemented his idea that by reorganizing surgeries, hospitals can save money and take better care of patients. 

Eugene Litvak: And I said, that’s a management law has nothing to do with the state. And they said, no, no, no, it does. Uh, and I said, then let, let me, I’m curious whether gravitation law works in South Carolina.

Dan: How did they respond to that? 

Eugene Litvak: Uh, people just get angry from some of my comments. 

Dan: Political maneuvering, may not be your strong suit, not to tell you anything you may not have heard before. 

Eugene Litvak: Yeah.

Dan: So I left that conversation with a hypothesis: Maybe this guy just doesn’t have the diplomatic skills for this kind of work.

But when I ran that hypothesis by Mark Taylor, he had a counter-example from Litvak’s work at Cincinnati Children’s Hospital.

The administration was backing him, but they said eventually the various department heads would vote his specific plan up or down– so he needed to secure *yes* votes.

Mark Taylor: He said, Mark, I, I lied a little bit. I would meet with these different constituencies, the orthopedic surgeons, the anesthesiologists, the nurses, the administration, and each one I would go to, I would tell now don’t tell anyone else, but your group is gonna benefit disproportionately from this

Dan: And then — as Eugene told me — the leaders met to vote on his plan.

Eugene Litvak:  So everybody raise his or her hand and look at his peers around with a slight smile. Say, oh guys, I know something you don’t, you know, I benefit more than you.

Dan: Eugene Litvak’s diplomatic skils — or lack thereof — maybe aren’t the whole issue. 

He and his supporters have another hypothesis. 

Namely: It’s hard to change institutions. 

Surgeons are trained to fight for those Monday morning block times– and in hospitals, they have a lot of clout. They bring in patients, and administrators are afraid to cross them.

Here’s one of Eugene Litvak’s most vocal allies

Peter Viccellio: My name is Peter Viccellio. I work at Stony Brook on Long Island, and I’m an. Emergency physician

Peter Viccellio:  and I am in my 48th year of practicing emergency medicine

Dan: Peter’s published big studies with Litvak, goes on conference panels with him.

And he’s got a very long view on medicine and hospitals. Not only has Peter himself been practicing for decades, his dad was a doctor.  Peter used to go with him on house calls when he was a kid. He says in those days

Peter Viccellio: If you had a stroke, you stayed at home. If you had heart attack, you stayed at home. ’cause the hospitals had nothing to offer you. So it made sense to have a hospital nine to five, Monday through Friday with a skeleton crew on evenings, nights, and weekends.

Dan: He’s seen the role of medicine and hospitals change dramatically

Peter Viccellio: When I was in medical school, if you had lupus, you died when you were 18 years old. Now I see 70 year olds with lupus. It’s amazing what I’ve seen. I think when I graduated from medical school, the only cancer that you could really cure was Hodgkin’s Lymphoma. That was it. And there are so many cancers now that can be cured, or at least can be substantially slowed down and contained. So it’s just a dramatic change.

Dan: But even though hospitals do so much more now, they haven’t changed their basic schedule.

Peter Viccellio: We have a seven day a week problem, and we’re still trying to solve it with a five day a week. Solution. And when I say five days a week, I mean eight hours each day of those five days a week. So that’s 24% of the week that we are running full fledged. 

Dan: And just changing the schedules for surgeons wouldn’t be enough– as Peter says a surgeon would tell you.

Peter Viccellio:If you wanna do a hip case on a Thursday or Friday, is there enough physical therapy present on weekends to get the patient up and walking around? Do you have the needed ancillary services and whatnot to get stuff done?

Dan: And he says hiring extra staff for weekends may sound expensive. But…

Peter Viccellio: if you’re doing more stuff on the weekends. But you have the same volume. It means you’re doing less somewhere else. So it’s called redistributing the load.

Dan:And people’s lives get more predictable — less emergency overtime. And according to Eugene Litvak’s modeling, you don’t necessarily need to go twenty-four seven. 

Peter Viccellio: if you went at this for six days a week, so that a Saturday was just like a Tuesday, then you’d get a huge gain.

Dan: But Peter says the old five-day-a-week schedule — and the problems that come with it– aren’t just U.S. phenomena.

Peter Viccellio: I’ve been to Italy and Korea and England and Scotland and all sorts of different places talking about the same exact problems that we have here. 

Dan: So while the capacity of medicine has exploded, the culture of hospitals is entrenched. 

Instead of asking, Why haven’t more hospitals done what Cincinnati Children’s did, it might have been smarter to ask: How did Cincinnati Children’s decide to jump in with both feet?

The answer turns out to be: Jim Anderson, the CEO, had taken a fairly unusual path. Before becoming the CEO, he had never worked for a hospital before.

He’d been a lawyer for most of his career — but had taken a few years out to run a local manufacturing company. While in that job, he joined the board at Children’s — and stayed on it for almost twenty years.

Jim Anderson: I ended up being chairman of the board and we needed a new CEO. And, um, we looked around and I lost control of the search committee and they turned on me and wanted me to do it. And so I agreed.

Dan: That was in 1996. By the time Eugene Litvak came to Children’s, Jim Anderson had been the CEO for ten years. He had been part of the organization’s leadership for a quarter century. 

Jim Anderson: I am much more comfortable, much more comfortable taking risks and pursuing adventures, than the typical medical community.

Dan: And even though he had that outsider’s perspective, he had the insiders’ trust.

Jim Anderson: The presumption was because we all knew each other and had worked together for so long that I wasn’t gonna do crazy things.

Dan: And to Jim Anderson, there was nothing crazy or unfamiliar about operations management. Because like Eugene Litvak — and, as far as he knows, unlike most health care executives — he had worked in industry, in manufacturing. 

Jim Anderson: I mean, if you went out and laid those out as criteria for your next CEO, you’d have a hard time filling it. It’s a lot, a lot of luck involved. 

Dan: Eugene Litvak has continued to attract clients one at a time — a hospital in Toronto, a clinic in New Orleans — and sometimes more. He says he’s currently working with the Canadian province of Alberta.

His ideas haven’t been adopted at that kind of scale in the U.S., but he thinks eventually hospitals will come around. Because they’ll have to. Many of them are in trouble financially. 

Litvak compares hospital CEOs to a guy falling from a skyscraper.

Eugene Litvak: And, in the middle of his fall, he said, oh, where I’m going, but touching his arms and legs are so far so good. 

Dan: Republicans in Congress are talking about cutting hundreds of billions of dollars from Medicaid. That’s a lot less money for hospitals.

Eugene Litvak says the government could save much more by offering hospitals technical support to adopt his program. He couldn’t do it all himself. 

Eugene Litvak: We are a small organization, but we can teach many other big sharks like Optum, Ernst & Young consulting company, Deloitte, McKinsey, how to do that. We could certify them and teach them how to do that. They have thousand, hundred thousand boots on the ground, so you can do that.

Dan: One way or another, he’ll keep at it. He tells me about an exchange with one of his advisory board members, a guy named Bill.

Eugene Litvak: At one of our board meetings, he told me, Eugene, I admire your persistence. And my answer was, Bill, if at one point, you feel like you want to call me an idiot, don’t mince your words.

Dan: If Eugene Litvak is an idiot, I would like to meet a lot more idiots like this.  

Meanwhile: We’ve been working hard on a two part series for next month.  About dealing with the high cost of drugs. 

A while back, we asked you to share your stories about sticker shock at the pharmacy

Listener:  The pharmacist would burst out laughing every time I showed up to pick up the prescription and he saw the charge.

Dan: And we asked you what you’d learned. You came through in a big way. Your responses taught us things we hadn’t understood before. And in our next two episodes, we’ll be sharing it all.

That starts 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. 

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.

An Arm and a Leg is 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 arm and a leg show, dot com, slash: support. 

Thanks! And thanks for listening.

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

For more from the team at “An Arm and a Leg,” subscribe to its weekly newsletter, First Aid Kit. 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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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).

So in this episode of “An Arm and a Leg,” host Dan Weissmann speaks with KFF Health News chief Washington correspondent Julie Rovner to try to get a handle on what’s happened so far. Rovner has been covering health care in Washington for nearly 40 years and hosts the weekly health policy podcast “What the Health?”They talk about what the end of a little-known federal health regulatory agency could mean for the health care benefits of millions of Americans, with some help from KFF Health News senior correspondent Arthur Allen. Then, Rovner talks about efforts to cut Medicaid and why it may not be so easy to take apart.

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– 

2025 has been a LOT so far, especially since the second Trump Administration got started. We hear about a lot of sudden moves, a lot of cuts, maybe some reversals — in health care (and everywhere else). With bigger moves maybe still to come. 

What’s ACTUALLY happened so far? I can’t keep up. 

But I know some people who might. Our pals at KFF Health News have a whole NEWSROOM — dozens and dozens of people — publishing stories every day. 

And one person in particular there is as plugged-in as can be. 

Julie Rovner has been covering health care in Washington, DC for longer than anybody. Close to four decades. 

When we first start talking, Julie gestures behind her. On a bookshelf in her office are copies of Congressional Quarterly, where she started reporting in the 1980s. 

Julie Rovner: I mean. Literally every time somebody in Congress sneezed on healthcare, I wrote a story. That was my job. For eight years. It was sort of the beginning of my career, but I’ve sort of thought about it ever since. 

Dan: Over the decades, she’s watched big changes happen incrementally, one sneeze at a time. 

Julie covered health care for NPR for more than 15 years, and since 2017, she’s hosted KFF’s podcast What the Health. 

Every week, she convenes a roundtable of top health-care reporters for a total inside-the-beltway nerd-fest. 

And it turns out: Even Julie Rovner has a hard time maintaining an up-to-date scorecard.

Julie Rovner: I’m trying to keep a running list of what’s been cut and what’s been restored, and it’s virtually impossible ’cause there’s 20 things every day. I mean, basically the way I do my news podcast now is I spend four days a week making a list, and then on the fifth day, I cut it in half about the things we can talk about. 

Dan: Oh my gosh. 

Julie Rovner: And on the day of the podcast, I usually cut it in half again. Dan: So, the scorecard keeps changing too fast. But Julie does see a big picture. 

And because she knows all the details– four decades of them– she can help us see it by telling us two stories: 

One about a teeny part of the health care system that most of us have never heard about. Which is now one of the too-many-to-keep-track-of offices that the Trump Administration has taken a chainsaw to. 

Then we’ll look at something everybody’s heard about — and lots of people are worried about: Medicaid. And Julie’s gonna show us why it may not be so easy to take apart. 

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. 

Our first story — this little agency — teeny, by government standards — Julie actually watched it get built, early in her career. And it turns out to be a great example for this show to look at. 

I mean, here’s how Julie starts telling its origin story: 

Julie Rovner: In the late 1980s, there was kind of an agreement between Republicans and Democrats that healthcare costs were going up really fast and we didn’t know why. And one of the reasons is that we didn’t actually know what worked. 

Dan: That is, everybody wanted to know: Why does health care cost so freaking much, and what can we maybe do about it?

And they thought: Maybe somebody should do some research about what’s actually worth paying for. Between Medicare, Medicaid, and health benefits for government workers and veterans, the federal government does a lot of the paying. 

Julie Rovner: There was consensus that the federal government is spending all of this money on healthcare, they should spend at least a little bit of it, trying to figure out what works. And there should be some kind of, you know, referee, like a government agency. 

Dan: And of course that agency would need a name.. 

Julie Rovner: It was originally gonna be the Agency for Healthcare Research and Policy, but somebody figured out at the last minute that that would make its acronym AH-CRAP and they decided that was a bad idea. 

Dan: So they reversed the last two bits and called it the Agency for Healthcare Policy and Research. 

Julie Rovner: My favorite piece of health policy trivia. 

Dan: What can you tell me about the various sneezes and hiccups and coughs along the way? 

Julie Rovner: Oh, well there was quite a fight in creating “ah-crap.” 

Dan: Even though the idea had backers among both Democrats and Republicans, they had to deal with constituencies — interest groups — with turf to protect. 

Julie Rovner: There were medical organizations and insurance companies and they did not want the government dictating how medicine would be practiced. So it was not, you know, it was not a done deal. It took a lot of negotiating. 

Dan: And in 1989, the first year of George H.W. Bush’s presidency, neither political party could muscle anything through. 

Julie Rovner: Democrats are in charge of Congress. Republicans are in charge of the White House. Hence, anything that’s gonna happen is gonna be bipartisan. Unless they’re gonna try to override a veto. And hint hint, there were a couple of attempts to override George HW Bush vetoes, and

they all failed by a couple of votes, mostly on abortion stuff. And there was an NIH bill because I remember obscure things like this. 

Dan: I mean, you see why Julie is THE person to give us this story, right? 

So the agency gets created in 1989. and one of its jobs is creating practice guidelines. Official federal recommendations about treatments: Which ones worked, which ones don’t. 

Julie Rovner: It puts out an awful lot of guidelines and surprise, some of them were really controversial. 

Dan: Some eye doctors didn’t like a guideline on cataracts. The Pharma industry hated A guideline that recommended reducing the use of brand-new drugs. 

Julie Rovner: Then mid nineties they come out with one on back pain, on acute back pain. And one of the things this guideline found at looking at. All of the evidence is that. Back surgery doesn’t actually work very well for acute back pain. Um, needless to say, the nation’s spine surgeons were not thrilled. 

Dan: That guideline came out in 1994. That November, Republicans scored big majorities in both houses of Congress. 

NEWS ANCHOR 1: We begin tonight with the most straightforward reaction we’ve heard all day to the results of yesterday’s election. The Democratic chairman David Wilhelm said simply,“We got our butts kicked.” 

NEWS ANCHOR 2: Republicans called their promises a contract. 

GOP MEMBER: Today, we Republicans are signing a contract with America. 

Dan: A contract that required, among other things, big budget cuts. And this little agency ended up on their hit list. 

Julie Rovner: they were representing their spine surgeon constituents, and they were ready to just get rid of the whole thing. they tried to just wipe it out in the appropriation bill and they came very close, but didn’t quite

Dan: They did cut funding — including the money for creating guidelines. And they didn’t forget. In 1999, Congress passed legislation that formally kicked the agency out of the guidelines business altogether 

And gave it a new name: The Agency for Healthcare Research and Quality. AHRQ (arc), for short. 

Julie Rovner: Congress loves to give health agencies new names – even when they’re the same agency– because they want to sort of rid it of its baggage from the past. So we’ve renamed it, gotten it out of the guidelines business, but it is still the main Federal agency that looks at the quality of healthcare and how healthcare works. 

Dan: For example, Julie says AHRQ runs the Healthcare Cost and Utilization Project. HUP for short, of course.Which keeps track of some important numbers: 

Julie Rovner: How many people were in the hospital for how long? How many of them were kids? How many people got ambulatory surgery? How many hospital readmissions were there? This is that database 

Dan: And maintaining that database is part of AHRQs job. 

Julie Rovner: So it’s very small. But it’s the only agency that basically does what it does, which is to say we spend a fifth of our economy on healthcare. We should try to figure out how well it works. [ 

Dan: Or rather it was, until now. In March, officials from the Trump Administration’s Department of Government Efficiency — DOGE for short — held their first meeting with AHRQ’s leaders. 

Arthur Allen: it was a meeting in person at, at their office where this was done 

Dan: Julie’s KFF Health News colleague Arthur Allen talked with one of those ARQ staffers. 

Arthur Allen: It was just told, we don’t know what you do. We’re gonna cut you 80, 90%. 

Dan: Arthur says he found out about the whole thing by following up on a tip in a LinkedIn post. He says pitching the story wasn’t the easiest sell, even at KFF.

Arthur: Everybody was making jokes about it, They were like, yeah, good luck making an interesting story out of this. You know, good luck explaining what AHRQ does or making it into something anybody would want to read. 

Dan: He did, and they published it. And it led to a new tip: As Arthur reported, ARQ was getting merged with another office in the department of Health and Human Services– the Assistant Secretary for Planning and Evaluation. 

Sources from that office saw his ARQ story and told him: Their office was getting cut dramatically too. 

According to his sources, between the two agencies, almost three quarters of the people are gone. 

Including: everybody who was involved in calculating the federal poverty line. 

As the headline for Arthur’s story says: eighty million people qualify for benefits based on that number. 

Arthur Allen: It’s used by, you know, literally thousands of agencies, private, public, state, local, federal, to decide whether people qualify for benefits: food stamps, Medicaid, subsidies for childcare– you know, pretty much anything you can think of where there’s assistance to lower income people. 

Dan: One of the fired workers told Arthur, quote: “There’s literally no one in the government who knows how to calculate the guidelines. And because we’re all locked out of our computers, we can’t teach anyone how to calculate them.” 

Arthur Allen: The guy had been doing it for like 20 years. He was just thrown out the door and email removed. No way to reach him. 

Dan: He told Arthur that using a different methodology would produce different results. If the new calculation didn’t fully account for inflation, for one example, some people could end up losing benefits. And there are a lot of other examples. 

Arthur Allen: Over years, you know, you’re trying to develop the best way to do this. Any kind of number like this, which you’re trying to hone down and make it as accurate as possible, you develop this sort of fingerspitzengefühl…

Dan: What’s fingerspitzengefühl? 

Arthur Allen: Well, it’s a German word that means like, feeling at the end of your fingers, where it’s like, it, it’s an undefinable ability to do something like 

Dan: Like pick a lock? 

Arthur Allen: Yeah. Yeah. Like Right. Exactly. 

Dan: An HHS spokesperson told Arthur the department would continue to comply with statutory requirements and maintain critical programs. After the article was published, another spokesperson called KFF to say “the idea that this will come to a halt is totally incorrect. Eighty million people will not be affected.” 

Arthur Allen: They were like, there are other people at HHS who can do that and, you know, it’s, it’s true. It’s just, you could have made it so much easier. And also they haven’t been the most reliable always in terms of, you know, saying something and then following through on it. So, you know, there’s reason to be skeptical. 

Dan: Well, it’s, it’s a reporter’s credo, right? If your mom says she loves you, get another source. 

Arthur Allen: Yeah. 

Dan: So now we’ve actually looked at a COUPLE of small examples. And there are so many more. Julie Rovner sees them as part of the bigger picture.. 

Julie Rovner: How I’ve been thinking about this is that our healthcare system is a giant Jenga tower and it’s a little wobbly and what holds it up is everything that happens from the Department of Health and Human Services, it’s all the rules of the road. It’s all the enforcement, it’s all the protections. In many cases, it’s actually the funding. It’s what funds a lot of programs for people with low incomes, the training of, not just doctors, but future researchers. And they’re yanking out sticks from this Jenga tower as fast as they possibly can, and when the whole thing comes down, it’s gonna be very, not pretty. 

Dan: She sees all those blocks getting pulled from the Jenga tower. She knows why they’re there. And what could happen as they get yanked away.

Julie Rovner: I feel a lot like I did during the early parts of the pandemic. It’s just that feeling of, oh my God, what fresh hell is next? And will we ever be able to fix it? I’m, and I’m really worried about that. And you know, at least during the pandemic, I felt like everybody felt that way. 

Dan: With cuts and changes we’ve seen so far, the administration has acted on its own– and courts may or may not stop or reverse some of them. 

But then there’s one of the big things lots of people worry about: huge cuts to Medicaid, which insures something like 79 million people.Cuts on the scale we’re hearing about would requires Congress to act. To pass legislation. 

Which Julie Rovner thinksCongress will find very hard to do. 

Julie Rovner: Not so much because it’s hard to cut Medicaid, which it is, but because it’s gonna be really hard for this Congress with these little tiny Republican majorities to agree on anything. 

Dan: Julie, of course, has some very specific reasons these particular cuts will be so difficult for these particular Republican majorities. That’s next. 

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health issues in America. Their journalists — like Julie Rovner and Arthur Allen — do amazing work. We’re honored to be colleagues. 

So just to recap, here’s why cuts to Medicaid loom so large. 

NEWS ANCHOR 3: Republicans are looking to slash $2 trillion with a T in long-term spending. And Medicaid could be a target 

Dan: Congressional Republicans have passed a budget framework— basically, an outline — with big cuts spread across ten years. 

They’ve assigned committees to find specific cuts, and they’ve given more than 800 billion dollars in cuts to a committee that doesn’t have a lot of other options 

NEWS ANCHOR 4: A new analysis from the Congressional budget office shows the proposed budget would require MASSIVE cuts to Medicaid spending.

NEWS ANCHOR 5: It’s mathematically impossible for Republicans to meet their own target without cutting Medicaid. 

Dan: And Julie says, cuts on this scale could hurt a lot of people. 

Julie: I’ve seen estimates that 20 million people could lose their Medicaid coverage,…it’s maybe a quarter of the people on Medicaid. 

Dan: Julie says Republicans want to avoid saying they’ll make these kinds of cuts. So… 

Julie Rovner: You know, now Republicans are saying we’re not gonna cut Medicaid, puts the air quotes. 

Dan: What they’re saying they WILL do, that’s gonna require some unpacking. Here’s the official line, as Julie puts it 

Julie Rovner: We’re just gonna reduce the extra money that Medicaid pays states for the Medicaid expansion, under the Affordable Care Act. 

Dan: OK. Extra money for states. Medicaid Expansion. Affordable Care Act. 

Let’s break that down. The Affordable Care Act is best known for “Obamacare” marketplaces, where people can buy health insurance even if they have pre-existing conditions. 

But another big thing it did was to expand Medicaid: It raised income cut-off so more people could qualify. 

Now, the way Medicaid is designed, states share the cost with the federal government. But under the ACA, the feds send extra money to states, to pay for most of that expansion. Like 90 percent of it. 

That’s the context for this line that Congress wouldn’t cut Medicaid, just the “extra” money to states for the expansion. 

Julie Rovner: And we see a lot of Republicans saying, oh, if states wanna continue it. They can just pay their regular share. Well, that regular share is $626 billion over the next 10 years that states would cumulatively have to come up with. Um, states, unlike the federal government, pretty much have to balance their budgets every year. They don’t have 626 billion extra dollars hanging around to do that. 

Dan: Julie thinks a lot of states would end up cutting Medicaid. Some would do it automatically, with laws that are already on the books. 

Julie Rovner: We have 12 states that say if Congress reduces that threshold from 90%, we immediately cancel our Medicaid expansion. They’re called trigger laws and there’s 12 states with trigger laws. 

Dan: But some states — not only do they not have trigger laws. They have a big problem. 

Julie Rovner: Three states, three very red states, Missouri, Oklahoma, and South Dakota. Expanded Medicaid, not just by ballot measure, but by amending their state constitutions. 

Dan: Yeah, this was kind of interesting: All the states that initially rejected the Medicaid expansion were led by Republican politicians. 

It seems like a big reason they opposed it was because, well, it was part of the ACA– ya know, “OBAMA-care”? Their legislators would never vote for it. 

But expanding Medicaid is popular with a lot of people. The legislatures in these states didn’t vote for the expansion, the people did — they voted for ballot initiatives that actually added Medicaid expansion into their state constitutions.. 

Julie Rovner: These three states, that change their constitutions, don’t have trigger laws because they have changed their constitution. That maybe helps explain why Senator Hawley from Missouri, who is not known as a big defender of Medicaid, uh, has said he’s not gonna vote for Medicaid cuts because his is one of the states that could be left holding a very large and expensive bag if they’ve rolled back this additional federal match. So that’s just one example. You know, when he first said it, it’s like, why is Josh Hawley suddenly so gung-ho for Medicaid? Um, that helps explain why. 

Dan: That is very interesting. So this is an example of why it’s hard to cut Medicaid. Um, 

Julie Rovner: Very, yes.

Dan: And Julie says, there are other reasons too. 

Julie Rovner: I mean, if you go back to 2017, when the Republicans try to repeal and replace the Affordable Care Act for the first time, Medicaid turned out to be a main reason why they couldn’t, because suddenly people discovered that Medicaid is not just for, you know, moms and kids on welfare, medicaid pays. The vast majority of the nation’s nursing home bills, so everybody’s grandparents who were in nursing homes were probably getting Medicaid. Suddenly we discovered how many people were getting Medicaid and people discovered how many people were getting Medicaid, and they came to Congress. 

NEWS ANCHOR 6: On Capitol Hill where there were protests and many arrests today 

Crowd: Kill the bill. 

News reporter: Senate Republicans today received a bruising. Welcome back to Capitol Hill… 

Crowd: Kill the bill. Health care is a human right. 

Julie Rovner:I was there and they said, we don’t want you to do this, you know, it, it was very close, but in the end, I think Medicaid was really a major reason why Congress proved unable to repeal the ACA, if anything, Medicaid is now more entrenched and there are more people on it than there were in 2017. Um, and Congress has even smaller majorities. You judge how hard it’s gonna be. 

Dan: And as you’ve said, three states with two Republican senators each. Julie Rovner: Each. That’s correct. So there’s six. 

Dan: Republicans hold 53 Senate seats. They could lose three votes and call in Vice President JD Vance to break a tie. They need 50 votes. 

Julie Rovner: So they have 53 votes and six of those votes come from states. That would be left holding a very expensive bag. And another three or four senators who voted against it in 2017 are still there. So even counting to 50 is hard.

Dan: First, that’s one of Julie’s beloved Corgis in the background, amped up because he hears a neighbor dog outside. 

Wally: Woof! 

Julie Rovner: Wally, are you barking at Churchy? I’ll let you go play with him later. 

Second, of course we don’t know what Congress will actually do in this very-unusual year. 

But no matter what, it is fun talking about politics with Julie Rovner. 

And even if it does not seem like a fun time to be Julie Rovner, to be doing the job she does — drinking from the firehose, as she says — I don’t think she’s going anywhere. 

Julie Rovner: Yeah, I mean, you know, my mom was a journalist. My dad was a, a political staffer, basically. He worked at the state, federal, and local level in his career and basically, you know, made policy happen. And, , that is my legacy and I really care about it. 

Dan: And, she is not taking in absolutely EVERYTHING. For instance, she has not been watching “The Pitt.” The super-exciting– and super-stressful–new medical drama we talked about last time–the one that chronicles an especially-intense day in a busy urban emergency room. 

Julie Rovner: I started to watch it –and I watched every episode of ER. I mean, I’m one of those people. I’ve also seen every episode of Grey’s Anatomy which is insane. Um, but I started to watch the Pitt and I got about three quarters of the way into the first episode, and I thought, I cannot deal with this right now. And I turned it off. 

Dan: Yeah. 

Julie Rovner: I just– and I watched severance! I’m like,‘Why am I watching severance? I do not need anything creepy in my life right now.’ But it was very good. It’s funny, I could get through severance, but I could not get through The Pitt. 

Dan: So, even Julie Rovner has her limits. Which I think is great.

She is doing the thing I remind everyone to do at the end of every episode of this show: Taking care of herself. 

If you have not subscribed to our First Aid Kit newsletter yet, I think this is a great time to check it out. 

It’s where we boil down some of the practical things we’ve learned about taking care of ourselves and each other: 

My colleague Claire Davenport has been helping her roommate fight back against more than 14 thousand dollars in medical bills. They wiped out ten thousand with some due diligence. 

And I’m collecting advice for what could be a one-page resource: Some quick advice and links that everybody should get before the first hospital bill arrives. 

You can sign up– and read everything we’ve done so far — at arm and a leg show dot com, slash first aid kit. 

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

Until then, take care of yourself. 

This episode of An Arm and a Leg was produced by me, Dan Weissmann–, with help from Emily Pisacreta, Claire Davenport, and Zach Dyer of KFF Health News –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. 

An Arm and a Leg is Distributed by KUOW– Seattle’s NPR 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 arm and a leg show, dot com, slash: support. Thanks! And thanks for listening.

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

For more from the team at “An Arm and a Leg,” subscribe to its weekly newsletter, First Aid Kit. 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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Host Dan Weissmann talks with Alex Janke, an emergency medicine doctor and health policy researcher, about how the show stacks up against his experiences in the ER. They also discuss its depictions of the financial forces that shape day-to-day problems inside ERs.

Credits

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

Dan: Hey there. I’ve got a new favorite TV show: “The Pitt.” I signed up for HBO — Max, whatever –thats what my editor says I’m supposed to call it. The show takes place in a Pittsburgh emergency room, and the first season follows the staff through a single, jam-packed day, hour by hour. It’s riveting. Noah Wyle, who got famous playing a young doctor on the show ER in the 1990s, stars here as the senior doc on duty. And people who work in emergency rooms say it gets a lot of things right, including medical details that fly past most of us in scenes like this… 

Doctor 1: Bring me up to speed? 

Doctor 2: Intubated for agonal respirations. GCS five, probably anticoagulated. Doctor 1: With what? 

Doctor 3: First time here. There’s no medical records. 

Doctor 1: Call for FFP. 

Doctor 2: No, we got four factors… 

Dan: And yeah, I basically did not catch any of that. But when I played it for an actual ER doctor, Alex Janke, he kept smiling and nodding along. In any case, those were not the kinds of scenes I called Alex Janke to talk about. Because what drew me to the Pitt — for professional purposes at least — are scenes that show the bigger-picture forces — the financial forces — that MAKE this day, and every day, so difficult for the people who work in big-city ERs, and for the people who show up needing care. Forces that make ERs more crowded, and more chaotic. Less safe, and more expensive. I called Alex Janke because on top of working shifts at ERs, he does research on those forces as a professor at the University of Michigan. 

Alex Janke: I care a lot about. Emergency medicine. Like I think that what we do is really, really special. And I also think that if you want to understand the problems in the world, you should come to the emergency department,’cause that’s where people go when they have problems. 

Dan: Problems like gun violence, homelessness, sex trafficking,drug addiction, and a likely hate crime bring patients to The Pitt throughout the season. The Pitt also looks at questions that Alex studies: Why do people have to wait so long to get seen at ERs? How badly can those long wait-times affect our health? So, we watched some scenes that address those questions together and Alex was like… 

Alex Janke: I’ve gotta find the people that made this show. This is so crazy. They, they’ve gotta have some docs working for them. 

Dan: There’s a whole team. There’s a whole team. 

Dan: Alex Janke thinks the producers picked the right team… because, he says: This is too real. So here comes a debrief. Basically free of spoilers — in terms of the MEDICAL drama. And I’ll tell you right now: The financial problems? Those storylines do not get wrapped up on The Pitt, or in real life. But the show does help us understand them, and what they cost all of us– doctors, patients, everybody– in money, in our health, and in our emotional well-being. 

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 folks who made “The Pitt” made a super-canny choice: The show follows a single day in this ER — and it happens to be the first day for a crew of new residents and interns. So while we watch them get shown around, we get a tour. First stop, the waiting room. It’s PACKED. A second-year resident explains how patients register, get a quick assessment… 

Doctor: And then they come back to waiting room till bed opens up Doctor 2: For how long? 

Doctor: Eight hours if they’re lucky. A lot of times 12. 

Doctor 3: Ah, is it always this busy? 

Doctor: Uh, no. It gets a lot busier. 

Dan: Here’s Alex’s take on that snapshot.

Alex Janke: I think this is entirely real. And we can really expect this to be true going into the future that, uh, you know, eight hour waits, 12 hour waits, very high rates of left without being seen are just gonna keep happening all over the country. And it’s not gonna be every day that you walk in the door. but it’s gonna keep happening. 

Dan: Why? 

Alex Janke: That’s a great question. 

Dan: Alex has a couple of answers. One is about demographics: We’ve got more folks now who are old, with complex medical issues than ever before, and that’s only gonna get more true for a long time to come. The other basically gets dramatized in the next couple scenes we watch. First, Noah Wyle’s character, the senior MD on this shift, Dr. Michael Rabinovich — everybody calls him Doctor Robby – gives the newbies his briefing. Here’s the first thing he tells them. 

Robby: As you can see, our house is always packed and our department is mostly clogged up with borders. Those are admitted patients waiting for a room upstairs sometimes for days. 

Dan: OK, that went by quick, but Dr Robby basically just described WHY people wait eight hours, twelve hours, why this ER and its waiting room is so full. I’ll let Alex explain. 

Alex Janke: The emergency department is not full because folks with the sniffles came in when they could have gone to an urgent care. That is not the reason that the ER is crowded. Those patients are so easy, we see ’em out in triage. I love seeing those patients ’cause that’s somebody that I can 

get in and out. I can take really good care of that patient sometimes just from the waiting room. The ER is full because there are folks that need to be in the hospital or folks that need to be in skilled nursing facilities or in rehab and we can’t get them to that next step. 

Dan: So those patients become “boarders” — get stuck: they can’t get moved to the next step, but of course they can’t go home either. 

Alex Janke: And so they wait in the ER and that creates crowding all around all the other patients.

Dan: The “boarders” fill up the ER beds. So everybody else piles up in the waiting room. Things get super-crowded. That sucks for those of us who show up as patients — a lot of us wait a super-long time. And that crowding — and the chaos that comes with it — creates burnout for people who work in ERs. 

Alex Janke: The thing that burns you out is feeling like you’re not able to do a good job or you’re not in control of your working environment. And this is the reason. It is because it is crowded. Like an old lady comes in with belly pain. I can’t take care of that patient in the waiting room that I need that lady back in the department. I wanna get a CAT scan on that lady. I need some time with her. And it’s just, it’s, it’s dangerous and unpleasant all around. 

Dan: Because you, because you don’t have space to see her. You don’t have a bed, you don’t have capacity to see her. And so she’s in danger. 

Alex Janke: Absolutely. Without a doubt. And, you know, there’s a deep, there’s a deep literature on this, crowding impacts the quality of care along every possible dimension. It makes you more likely to screw up. I’m an ER doctor. My whole job is to not screw up. I’m like playing this game and the game is to not miss something really bad. And the faster you make me go with fewer resources, your ER doctor’s just a little more likely to screw up and not handle that correctly. I have gray hairs from a couple of cases. 

Dan: He tells me about one of them. A woman who came in with a rash. When he finally examined her, twelve hours later, it turned out that rash was from flesh-eating bacteria. Those twelve hours meant that bacteria did a lot of damage. Alex says that woman spent a long time in the ICU, and took months to fully recover. 

Alex Janke: I mean, those are the, you know, that’s one of the cases I know about, like how many patients have I been on shift and I don’t even know what happened,’cause there’s so much chaos going on that I don’t have insight into what might have missed or what we might not have done very well? 

Dan: So the ER doesn’t work because it’s too crowded. And it’s crowded because of “boarders” — patients waiting for beds elsewhere. And in the next scene, we get Dr. Robbie’s perspective on WHY that’s happening. That’s when a hospital administrator, Gloria, shows up to give him a hard time. She says, WE NEED TO TALK ABOUT YOUR NUMBERS. Meaning, patient satisfaction numbers.

Gloria: Do you know how likely patients are to recommend this hospital? Robby: Um, this is an emergency department, not a Taco Bell. Gloria: 11%. 

Robby: Well, if you want people to be happier, don’t make ’em wait for 12 hours. 

Gloria: There’s a nursing shortage across the country. 

Robby: Most of our patients are boarders who are waiting for a bed upstairs. 

Gloria: We don’t have the beds. 

Robby: That’s bullshit. The beds are up there. You just don’t want to hire the staff. You need to care for ‘em. 

Dan: Alex has one little problem with this scene. He’s like, these conversations definitely happen, but not on shift, on the ER floor. But you know, OK it’s a TV show, and the whole premise is that we’re on the floor the whole time. And Alex has a second problem. Dr. Robby maybe does too good a job keeping his cool. 

Alex Janke: You know, Dr. Robby is rushing from one dying patient to another, and someone shows up in a suit and says, you know, your patients aren’t very satisfied with your care. I think he handles it like an angel. If it were me, I think I would lose my job that day. 

Dan: Otherwise, Alex is like: This is dead on. 

Alex Janke: There’s so much going on here. This is wild. It’s so wild. 

Dan: And he unpacks it. Yes, there’s a nursing shortage. Yes, there’s an actual shortage of hospital beds. And to a degree, these shortages are … business decisions. 

Alex Janke: There’s some real truth, there’s a real hook to the idea that the emergency department waiting room and the emergency department beds as a place to keep folks waiting for a bed upstairs in the hospital — it is an optimization problem.

Dan: An optimization problem. That’s what Alex says people who study hospital administration have called this situation. The question is, what are you optimizing for? If you’re a hospital administrator, Alex says, you’re trying to optimize … your budget. You’re asking yourself: How do you get the most return for what you spend? You don’t do it by paying nurses to staff beds with no patients in them. Nobody’s paying you for empty beds. 

Alex Janke: I mean, we want our hospital beds full. we’ve gotta pay these enormous costs for inputs, like, uh, nurses and, every single hour of nursing care that you pay for, you wanna make sure that, uh, it’s getting used. Every hospital bed day that you have staffed, you better fill up that bed. 

Dan: So, now you’ve got a new equation to balance. Here’s how Alex describes the question: 

Alex Janke: How do you maximize your patient bed days —that’s how you get paid — without ever having to turn away business? 

Dan: OK, let’s unpack that: You want to maximize patient bed days. The number of beds that actually have patients in them, beds you’re getting paid for, on any given day. But you’ve limited the supply of beds upstairs. You don’t want to pay for something you might not be able to sell. And yet: You don’t want to turn away business.You’ve got a patient who needs a hospital room — a potential paying customer –you don’t wanna tell ‘em, hey we don’t have room for you on our cardiac ward. You gotta go somewhere else. So, how do you make room for patients — for customers — when there’s more demand? 

Alex Janke: Well, one way to do that is to queue those patients, put them in a in a slot so that they’re ready to fill up that bed as soon as that bed becomes available. Where does that happen? The emergency department. 

Dan: So this is why Alex is so enthusiastic about this scene: It dramatizes this whole analysis — and Dr. Robby’s perspective– the boarders who crowd up the ER and the waiting room: They’re the results of the hospital’s financial strategy. No wonder Dr. Robby’s mad. 

Coming up: How doctors get caught in the processes that end up with awful bills for patients. 

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health issues in America. Their reporters win all kinds of awards every year. We are honored to work with them.

We’re gonna skip ahead to episode six of The Pitt. No spoilers here. This scene stands alone, and it’s all business. Robby stops by a computer terminal where one of the newbies is charting– writing up her notes after seeing a patient. Listen for a key term right up top: Medical Decision Making. A little later we’ll hear Robby use its initials: MDM. 

Dr. Robby: Four-year-old with a fever. Your medical decision making says otitis media. 

Dr. Javadi: Yeah, she had an ear infection. 

Robby: Did you also consider and rule out meningitis, mastoiditis, malignant otitis external? 

Dr. Javadi: I did. 

Dr. Robby: Then you should document your cognitive work in the MDM. Dr. Javadi: You want me to pad my chart? 

Dr. Robby: No. I want you to show your work. Billing is the side effect of that. 

Dan: “Billing is a ‘side effect’ of adding details” to the chart. When I watched that scene with Alex, he was like, Yup: charting is where our work turns into medical bills. 

Alex Janke: So when we bill for care, we bill an insurer for care, we bill the chart, right? 

Dan: The billing department translates the work described in the chart into 5-digit codes, and each one has a price tag. MDM, medical decision-making, contributes to codes for “evaluation and management” like 99281 or 99285. 

Alex Janke: And if you bill for 99285, you get a whole bunch of money. And if you bill for, uh, 99281, then you get a little bit of money. 

Dan: The only difference is that last number. It reflects a scale — 1 to 5 — how much work went into this visit. Was this straightforward? That’s a one. Was it high-level? Really complex? That could be a five. Researchers have found that “upcoding” — like billing a level four for something that’s really probably a two — is one reason why, as a country, we spend more on ER bills every year. I tell Alex: In one of the very first episodes of this podcast, we heard from a listener who had brought his son to the local ER — only place open at night — for what turned out to be …and ear infection. The hospital coded the visit a “4” out of 

five. Pretty expensive. Our listener said, if that’s a four, what is it when you bring your leg in a bag? Alex was like, Yeah. 

Alex Janke: There’s this fight between like physician groups on the one hand, and insurers on the other hand about like how hard our job is and how much they should pay us, and the only one who consistently loses in that fight is the patient. 

Dan: Yeah. Well said. Well said. 

Alex Janke: You’re absolutely right. It’s definitely true in emergency medicine. And you know, like I, I’ve written on this topic our patients are more medically complex than they have ever been. The complexity of the evaluation management that happens in the emergency department is higher than it has ever been. But that’s no excuse for, you know, leaving the patient with an absurd bill that’s out of proportion to what she did for them. This is one of the ways in which you’re like, put in all of these like little situations where like you’re in a lose-lose situation. 

Dan: Lose-lose situation. Alex tells me a story. He was working in triage one day, and a guy came in with a bug bite. 

Alex Janke: …and his buddy had convinced him that he might have like a really bad problem. He was like, this is a black widow spider bite. And it was a crazy day and I’m just like floating around at triage, slinging orders. And, he like stopped me in the hallway as he was like thinking about leaving. And he was like, do I really need to be seen for this? Do I really need to be seen for this? And I’m like, well, you have been seen. I am a doctor. And, and he walked out the door and I had this moment where I was like, do I go write a note on this guy? If I write a note, then we’ll bill him. 

Dan: And Alex says he knew: That guy didn’t have insurance. Whatever that bill was, he could get stuck paying for it. 

Alex Janke: I don’t know what that bill looks like. I don’t have insight into that. I don’t know how the place that I work at operates on that end. I’m almost never involved in it at all.

Dan: What’d you do? 

Alex Janke: Nah, I didn’t write a note. 

Dan: I said to Alex: Geez, some hospitals have folks who help people in these situations, who go: “Hey, let’s see if we can sign you up for Medicaid. Or a super-subsidized Obamacare plan. Or maybe you qualify for charity care here.” But of course not every hospital has those folks. Alex was like, oh yeah, for sure. 

Alex Janke: One of the places where I currently work, our registration staff know like a ton of stuff about insurance and patients will like ask me, and I’m like, oh, no, no, no. This is the person you gotta talk to. They actually know how to enroll whether it’s Medicaid or something else. Yeah. 

Dan: It’s great that there’s somebody , and you know, who the somebody is, for them to talk to,’cause that is not everybody’s experience. 

Alex Janke: Yeah. And also, I’ve worked at other places where you look around in the department and no one knows. And like, that’s always a bummer. Like there was a little while where I was handing out a phone number ’cause I didn’t like really know what I was supposed to be doing. And so I would, I would give people this phone number. I’d be like, what you’re telling me makes it sound like you qualify for Medicaid. But like, I don’t really know anything about Medicaid. This is the website, this is the phone number. It’s so bad. 

Dan: Alex says he hopes people who don’t work in ER’s watch The Pitt. 

Alex Janke: This show is good for people like me because it like humanizes us in a lot of ways and the show definitely makes us out —at least the first two episodes — they make us out in lots of heroic ways, and I think that’s great. And I think lots of emergency physicians are heroes. Lots of us are not heroes. You know, we’re just people. 

Dan: He thinks it’ll help people like him — in his role as a researcher and advocates — make a case for policies that’ll help ERs. And he’s not mad about seeing the business questions get dramatized. 

Alex Janke: We need to have those conversations way out in the open with bright lights and that’s the only way that they won’t ultimately have the patient be the only one who loses in the exchange. So, yeah.

Dan: As if we know a little bit more about the whole, about the game that we’re in the middle of. Yeah. 

Alex Janke: Exactly. Yeah. 

Dan: But as happy as he is that The Pitt is out there — having watched the first two episodes so we could have this conversation– he’s not inclined to watch more of it. 

Alex Janke: I think a lot of people, a lot of, like my friends, we don’t, we don’t have to watch it. I just go to work. It’s so spot on, so often, it feels like you’re at work. I’m like, well, I do this. I’ll tell you, I’m watching Abbott Elementary. 

Dan: The network sitcom about a Philadelphia grade school. 

Alex Janke: It’s pretty good. It’s pretty good. There’s some strong dialogue, there’s some really strong characters. 

Dan: Teacher friends of mine love that show. And it’s another, I mean, it’s interesting ’cause that’s another show about people who, part of their job is it like they’re in the path of suffering that other people are headed for and doing their best. 

Alex Janke: I sometimes say this to residents, but like you can go give as much as you want in the job of emergency medicine. You can give everything to the people who come in the door. It’s the same thing with teachers, right? If you’re a teacher, you can just keep giving. They’ll never stop asking for more, and a lot of ’em do. It seems like a hard gig to me and considerably less remunerative than my job, so… 

Dan: I will let my teacher friends know Alex said that. Meanwhile, about fifteen hours after we release this episode, HBO — I mean, Max — will release the last episode of The Pitt. For now. The show has been renewed for a second season, starting January 2026. Producers said recently that season two is gonna take place over a Fourth of July weekend… which, a study from Pew Research shows, means the busiest days of the year, by far, for emergency rooms. 

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, 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. An Arm and a Leg is Distributed by KUOW– Seattle’s NPR 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 arm and a leg show, dot com, slash: support. Thanks! And thanks for listening.

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

For more from the team at “An Arm and a Leg,” subscribe to its weekly newsletter, First Aid Kit. 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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Meagan spoke with host Dan Weissmann about what kept her motivated to keep fighting and the legal tactic that finally led to a breakthrough.

Credits

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

Dan: Hey there– 

A few months ago, we got a note from a listener named Meagan in California. It started like this: 

“Last month, I successfully had a provider pull back a bill from collections and stop billing me for an ER visit from July 2022. 

Meagan was writing to us in fall of 2024– that bill had not gotten resolved until more than two years after the ER visit. 

Meagan, um, wanted to thank us! Her note said she’d picked up some tactical advice, but she said the show had helped her keep going. Here’s how she put it when we talked with her. 

Meagan: I could listen to the podcast and kind of hear some community and say, I’m not alone. This is a possible thing, right? 

Dan: Of course Meagan’s story is epic. Because parts of it are personal, she’s asked us not to use her full name. 

This tale has some comically wild twists. And some important tactical lessons. 

And it’s Meagan’s reflections on the whole journey that I especially want to share with you. 

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. 

July 28, 2022 was a Thursday. Meagan woke up to a brand new experience: Vertigo. Nausea. Dizzyness, the works. 

Meagan: I just couldn’t see straight, couldn’t stand up… basically made it to the bathroom and laid on the bathroom floor for like four hours.

Dan: She called in sick to work, waited to feel better. But she didn’t. And she got frightened. 

Meagan: I think what was scariest about it is that I didn’t know why I had it. What if I have a brain tumor and that’s why I can’t see straight, or like, what if something’s going on with my eyes? 

Dan: Meagan lives alone. 

Meagan: So like the number of people that you want to call in that situation, that are like, ‘hi, can you like, help me?’ 

Dan: That number was zero. 

She called an ambulance, went to the closest hospital. 

The ER docs ruled out the scariest possibilities, gave her meds for dizziness and nausea, sent her home. And she recovered. 

That was the easy part. On to the bills. 

The fight over the first bill was really kind of a warm-up. This one arrived a couple months after her ER visit, from the ambulance service. Two thousand, seven hundred twenty-two dollars and forty-two cents. 

Which Meagan did not expect to pay. She’d been to the ER earlier in the year, paid a whole lot of money — which she knew meant she’d hit her insurance plan’s out-of-pocket maximum. 

Every insurance plan has this: It’s the number that, after you hit it, insurance picks up everything else. 

So she called her insurance company. 

Meagan: I was like,‘Hey, I’ve hit my out of pocket max. This doesn’t make any sense. I’m getting billed.’ And they kind of said,‘Okay, yeah, we’re on it. We’ll handle it. We’ll reprocess everything.’ 

Dan: And she did get paperwork from her insurance that said she owed the ambulance company nothing.

But she kept getting bills. And after a few months, a collection agency called about them. Meagan says she told them: My insurance company says I don’t owe this. 

And she says their response was, Well, do you have documentation? 

Meagan: And they said it in this tone that was like, you don’t know what you’re talking about and you can’t be right. Here’s a very specific document that you’re gonna need to prove this. And I was like, Yeah, I have that. 

Dan: You may have caught a second person laughing there. That’s our producer Claire Davenport, who talked with Meagan and did most of the reporting for this story. Meagan says she emailed the collections folks right away. 

Meagan: I was like,‘per our discussion, here is all the documents that say, I do not owe you any money.’ And then they said,‘okay,’ and I never heard from them again. 

Dan: So, Meagan was like, OK cool! That totally worked. 

But like I mentioned: That ambulance bill was just the warmup. 

By the time it got resolved, it was March 2023, almost eight months after her vertigo attack. Meagan says the hospital still hadn’t sent her a bill for the actual ER visit. 

But she had gotten documents from her insurance company, United Healthcare. They show that United had paid the hospital, run by Kaiser Permanente, a few thousand dollars. 

By the way: We know all this because Meagan shared dozens of pages of paperwork with us 

United seemed to think Meagan would owe Kaiser about five hundred seventy dollars.. 

Meagan says she finally heard from Kaiser in July 2023. Just short of a year since her ER visit. They sent a bill for three thousand, three hundred eight-one dollars and 62 cents. This is almost six times United’s estimate.

Meagan: I’m like, this is a massive amount of money. I know I don’t owe it. What is going on? 

Dan: Getting that resolved would take more than 15 months. And a lot of phone calls. From the start, she says she kept in mind tips from this show. 

Meagan: One of the things that y’all talk about on the podcast is just having that, like, pretty cordial tone, like not getting angry at the people. So every time I’m calling, like I’m frustrated, I’m tired, but I’m having a pleasant conversation with the person on the other end of the line who is not personally responsible for what’s going on. 

Dan: Here’s how she says those conversations tended to go. 

Meagan: I’d call United and I’d say,‘Hey, United. This provider is billing me. Can you guys reprocess this claim?’ And they would say,‘yep, we’re on it. We see your file.’ 

Dan: And by the time Meagan says she started making these calls United’s file showed Meagan only owed Kaiser about sixty-four bucks. Meagan says United would promise to tell Kaiser the deal. 

Meagan: I would also immediately call Kaiser and say,‘Hey, Kaiser. I just spoke to United. I’m protesting this claim. Please do not keep billing me.’ 

Dan: And so on. 

Meagan: Every single person that I talked to was trying to be helpful. Everyone was like, Oh yeah, like, I’ve looked through your notes, this looks like a mistake. 

Dan: She says, they’d tell her, just give us 10 to 14 business days to process this. 

Meagan: And then I would just go on with my life. 

Dan: But month after month, she says: those fixes just did not stick. 

Meagan: And so every time I got a bill, it was like, this person failed me. Like they weren’t able to do this and get it fixed for me. And it was just

super-disappointing. And I was like, I’m back in exactly the same position. Like, I didn’t feel like I had any other tools. 

Dan: But she found ways to keep going, make the next call. Like remembering how she’d fought off the ambulance bill. 

Meagan: I was like, okay, I’m so confident that I do not owe this because I have been successful before And so that would get me, like, really amped up and angry about it. 

Dan: That was one kind of energy. Meagan says she also got a lot of support and inspiration from her best friend. 

Meagan: Her mom had recently had to go in for knee surgery. Dan: And some of the bills, they hadn’t looked right to Meagan’s friend. 

Meagan: And her mom doesn’t speak a lot of English. She’s not very high income. So she’s got a lot fewer privileges than my friend or myself. And so my friend is the one who took on the responsibility of her bills. And so my friend was really helpful in that because we would talk about, like, it’s the principle of it for the people who can’t do this. 

Dan: Meagan says that principle gave her a different kind of energy: It let her imagine that there might be a bigger point to her fight. 

Meagan: Maybe if I can fight this, they can find some issue that this won’t happen again and it won’t happen to somebody else. 

Dan: And Meagan knew: This was happening to a lot of other people. 

Meagan: People have been fighting for harder stuff. People have had harder or longer chronic conditions, I was healthy, right? It’s not like I was fighting cancer bills or different providers or just the complexity that billing can get into. And I feel like your show was part of that inspiration for me where it’s like people out there are going through tougher things than just a single hospital visit where one bill is wrong. And so, yeah, I can keep doing this. This is easy. 

Dan: So month after month, Meagan says she just kept making that next call. And after a while, she tried some new tactics.

An Arm and a Leg Season 13, Episode 5 3/20/25 p.6 

After she got a bill dated December 24 — Christmas eve — she tried something new: 

She sent Kaiser a fax of the statement from her insurance saying she owes 64 dollars, not three thousand. 

And she says she called Kaiser to follow up. Got a guy on the phone. 

Meagan: I was like, did you get and he was like, I can’t confirm that we’ve received it. It takes X amount of days. 

Dan: By the time those days had passed, it was January 2025 — a year and a half after Meagan’s ER visit. She’d been fighting the bill for six months. 

And by the end of January, yet another bill arrived. 

So… Meagan thinks it’s around this time when she tried to get Kaiser and United on the phone together herself. United had given her a number to pass along to Kaiser’s billing office. 

Instead, this time Meagan got a Kaiser billing rep to stay on the line while Meagan started a three-way call. 

But she says United didn’t want that three way call. 

Meagan: They were like,‘Oh, the customer is on the line. You can’t use this phone number. Like this is only for businesses.’ 

Dan: No patients allowed. Meagan says United transferred the call to their customer-service line for patients. 

There was a menu to navigate.. Meagan was used to it. The Kaiser rep, not so much. 

Meagan: So we did the whole like click, you know, click number six click number one enter your you know Whatever and we’d maybe been on hold for like three or four minutes And she’s like,‘this is ridiculous. What are they doing? Why have we been here for so long?’ I’m like,‘ma’am, it’s been three minutes. Like, let me tell you what my life has been like lately. I was like, I know this music. I can tell you everything that’s coming.’

Dan: The problem did not get solved. Bills kept arriving. Meagan says she kept making calls. 

And then in June, a United Healthcare rep gave Meagan a suggestion that turned things around. 

That’s next. 

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health issues in America. Their reporters win all kinds of awards every year. We are honored to work with them. 

Meagan’s big call with a United Healthcare rep didn’t start with a very hopeful-sounding prognosis. She says the rep told her: 

Meagan: ‘I don’t think there’s anything more that we can do, like we’ve. We’ve provided all this information to Kaiser. We don’t know why they’re getting it. We’ve followed all of their instructions.’ 

Dan: But she says the rep did have something to offer. Legal recourse — right in the paperwork United had sent Meagan: 

Meagan: The United representative was like,‘Yeah, look at your explanation of benefits.’ There was language that she pointed out to me that said,‘you do not owe this bill and you have rights.’ 

Dan: And Meagan says the United rep told her about a free legal hotline. Meagan says she ended up talking with a lawyer who gave her a template for a Cease and Desist letter: A letter that says, if you don’t cut this out, I might sue you. 

The template cited state and federal laws. Meagan filled in details about how Kaiser may be violating them — by billing her for money she didn’t owe. The letter demanded that they stop contacting her.. 

And it said how if they violated her rights– for instance, sending her another bill or calling her — the law gave her the right to sue for damages. Up to a thousand dollars for each instance. 

Meagan sent her letter certified mail. She shared the receipt with us.

And, as she told Claire, this was actually the emotional high point of the whole epic. 

Meagan: I was walking around and I was like telling a couple folks, I’m like,‘I just sent a cease and desist letter to Kaiser’ and they would be like, ‘Oh my gosh, I’m so sorry,’ but for me, I was so excited. It’s the first point at which I felt that I had the power. Like, all of this situation the whole time along the way was like, I’m reliant on Kaiser. I’m reliant on United for these people to do things. And so that was flipping the script for me where I’m like, no, I’m a badass. 

Dan: And then two months later, she got another bill. This one said FINAL NOTICE. It said if she doesn’t pay up, Kaiser will send her to collections. 

So Meagan says she made the next phone call– and almost by accident — she found herself saying what turned out to be the magic words. 

Meagan: I laugh at how I handled this because I called Kaiser, I said – it was a really, again, very cordial conversation. I was like, Hey, um, I sent you guys a cease and desist. Uh, I received another bill. Um, what’s going on? And they’re like,‘Not sure. Don’t have it in your file that we ever received anything. Don’t have any record of that here with this claim.’ I asked it as a question. This is what’s so funny to me. I was like,‘So like, do I have any other options than to sue y’all?’ 

Claire: That’s awesome. That’s the kindest way I’ve ever heard of someone threatening to sue. 

Meagan: It’s so funny in retrospect, cause in the moment, it didn’t feel like a threat. It was just like. This is the next step, right? Like, I’ve done all the things that I’m supposed to do and it’s not working. And I think now we have to go to court. And that’s where Kaiser came back and was like, no, no, no, no, no. Like, we don’t, we don’t have to go to court. They immediately were like,‘I’m going to go ahead and transfer you to someone.’ 

Dan: Meagan says the woman she talked to — “Angie” in her notes — seemed to take her seriously. 

Meagan: She was like, I will pull your letter out of collections. I will call you in three days. And it was just after that, everything was boom, boom, boom, boom, boom

Dan: It took a few weeks. Meagan says Angie kept giving her status reports. 

Meagan: until finally one day I got the call and she was like,‘It’s done. It’s settled. You owe us 64 dollars,’ which is like, a huge win, but also I was like, could I also not pay that 64 dollars at this point? 

Dan: Not quite. Meagan says Angie transferred her to someone who would take that sixty-four dollar payment. 

Meagan: And she goes,‘Is this hospital visit from 2022?’ She was shocked. She was like,‘this might be the oldest bill that I’ve ever processed.’ Like, I was like,‘yeah.’ 

Dan: So, it’s done. 

We asked both United and Kaiser about Meagan’s story. They responded by email. United said they were glad their staff were ultimately able to help. 

Kaiser said Meagan’s “experience was unusual, and should not have happened. It was understandably frustrating for her, and we offer our apology.” 

Kaiser also blamed United for everything. They said ALL the bills they sent Meagan “were based on incorrect information from her insurer, which repeatedly provided us with wrong amounts for the patient’s responsibility, all while providing different information to the patient.” 

Which conflicts with Meagan’s recollections, and the documents she shared with us. 

For instance, there’s paperwork Meagan got from United saying, basically, “Hey, just FYI — here’s a copy of a letter we just sent Kaiser.” That letter shows Meagan’s responsibility as being — exactly the amount Kaiser ultimately accepted. OK. 

Meanwhile, Meagan is definitely still working through her feelings about the whole thing. 

One of them is actually disappointment. Meagan says that one of the things that kept her going was the hope that she could help Kaiser identify a systemic problem, and fix it.

By the end, it wasn’t really about the money. 

After the first six months, Kaiser actually reduced the amount they were billing her for — Meagan says she still doesn’t know why — from three thousand and some dollars, to five hundred and some, which she says she could have paid, no problem. 

Meagan: 500 for me was easy. But I know it’s not for someone else and that’s where I would always like pull back that strength and be like,‘this is all about an opportunity to get something fixed.’ I want this to not happen to other people. I mean, it’s, it’s almost a little bit of a pipe dream to hope that that’s going to happen, but I know for a fact it never happened because one person handled my case, and then that was it. 

Dan: So disappointment is one feeling. Another one is fear. 

Meagan says she may be more scared now than when she was fighting the bill. She compares it to the day she called the ambulance, her vertigo attack. 

Meagan: I almost didn’t have the mental capacity on that day to be scared. Everything that I did that day was about putting one foot in front of the other. I was like, okay, like, this is not good. I have to get to the hospital. If I have to get to the hospital, like, I need to call an ambulance. If I need to call an ambulance, I need to find out where my phone is. Okay, I’ve gotten to my phone. But if I call an ambulance, my front door is locked. And I really – I don’t want them to break my door down. I, like, crawled to my front door to unlock it and I just laid it in my front door until the EMTs were there, right? That progression that I just told you probably took about six hours, right? Like, it was just terrible but I didn’t have time to be scared. 

Dan: Meagan says while she was actually fighting the bill, she was just taking the next step, each time. 

Meagan: The scary part for me is actually today. Like, I don’t actually – I don’t believe that it’s over. I am still scared that I’m going to get another bill in the mail, that they’re going to make some other mistake that says, Oh no, she still owes this money. And I don’t know when that ends. 

Dan: Meagan says she asks herself if she would do it all again. And given the disappointment, all the work, and even the fear she still carries– she’s not sure.

Meagan: it’s hard in retrospect to know if any of it was worth it ‘cause I could have just paid 500 and never thought about it again. And that’s really, really hard to wrestle with. 

Dan: But she’s not sure she WOULDN’T do it again. She’s definitely got things she’s learned to appreciate. Like consumer-protection laws. 

Meagan didn’t learn about some of her rights until a United Healthcare worker pointed them out. But they were printed on the paperwork she’d been getting every month. 

Meagan: When push came to shove, it was written right there, and you could point to it. And someone somewhere in California fought for that and made that a law. And I don’t know who they are, but like every little element of that law coming through to support me, I’m very thankful for because it helped me so much. 

Dan: And as Meagan told my colleague Claire, when friends mention medical bills they’re fighting, she likes to encourage them. 

Meagan: I like to tell my friends the story of like, oh, I fought a medical bill and I And I kind of just leave it at that, right? I want to give them the fact like there is a data point that says sometimes you can fight medical bills successfully. And if you need to talk about anything like I’m here for you, 

Claire: We should create like a little badge saying, I fought a medical bill and I won or something like that. Like a little, like, I’m thinking of like a Girl Scout badge, like something you could put on your backpack. 

Meagan: Exactly. 

Claire: Like iron-on 

Meagan: Like, ask me about fighting medical bills. 

Claire: I love that idea. That’s something we should totally do. I’m going to tell Dan about that. 

Dan: I love it too! This is what I especially love about Meagan’s story: Meagan says our show encouraged her to take action and to keep going. And now she wants to give encouragement to other people. 

And: A friend of mine pointed out one time what’s so cool about the word encouragement. 

Break it down, en-courage — it’s like, filling someone up with COURAGE. It makes me so happy to think that this show encouraged Meagan. It makes me encouraged. That is what I want to keep going, keep passing along. 

Of course, I also want to share some of the tools that Meagan discovered along the way. 

For starters, there’s the sample cease-and-desist letter that lawyer shared with her. Some of the laws it cites are California-specific. But California’s a big state, maybe you live there! 

Wherever you live, you’ll have some of your own work to do, making sure the circumstances there apply to you. I’m not a lawyer, and we don’t give legal advice here. But this is a darned interesting place to start! 

I also want to shout out a hack that Meagan developed: Using the notes app on her phone to make a cheat-sheet that she’d always have with her. 

Meagan: I did most of these phone calls from work. And so what I realized is, oh, the bills at home. And I have an account number and it’s written on the bill. And I don’t know how to find that while I’m at my office or just like walking around, taking a phone call. 

Dan: So she made a place for them, on her phone. That’s a tip I definitely intend to copy. We’ll share more take-aways in our first aid kit newsletter — if you’re not signed up, the place to go is arm and a leg show dot com, slash first aid kit. 

And we’ll have a new episode for you in a few weeks. Till then, take care of yourself. 

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

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. 

An Arm and a Leg is Distributed by KUOW– Seattle’s NPR 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 arm and a leg show, dot com, slash: support. Thanks! 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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