Dan: Hey there — 

One morning when she was in eighth grade, Caitlin Mai did what she always did when she woke up. 

Caitlyn Mai: Music has always been a big part of my life. And so I immediately put in my headphones and started putting on music as I was about to get out of bed and get ready. And I noticed my earbud in my right ear wasn’t working. 

Dan: It was obvious, because on this Beatles tune she’d cued up, Eleanor Rigby, the vocals are almost all on the right-hand side, and she couldn’t hear them. 

Caitlyn: I was like, that’s kind of weird. So I switched the earbuds and it worked fine. But then it was, the other one wasn’t working in my right ear. And I was like, what? 

Dan: Yeah, confusing. And then she tried getting out of bed. 

Caitlyn: I was so dizzy. It was my first time experiencing vertigo, and it was so severe, I couldn’t walk across the room without getting severely motion sick. 

Dan: With that vertigo, Caitlin could barely walk at all. She had no sense of balance — that actually relies on a mechanism inside our ears. Later, doctors found she had lost 87 percent of her hearing on the right side. 

Caitlyn: They think I just had some sort of virus that settled in my ear, and it damaged my ear. But I went to bed completely healthy the night before. Woke up, couldn’t hear out of my ear. 

Dan: She had to learn how to walk all over again.

Caitlyn: I have to rely on my eyes. My friends still find it hilarious if I close my eyes, I fall over. 

Dan: That was eighth grade. Caitlyn made it through high school, in Tulsa where she grew up without a lot of accommodations. 

Caitlyn: Cause in middle school, early high school, you don’t want to bring attention to your disability. At least I really didn’t want to at the time. I was super anxious about that. 

Dan: Catilyn’s 27 now, she works as a legal assistant in Oklahoma City. Her husband’s a lawyer. And for the longest time, she couldn’t access a tool that helps restore hearing for lots of people: Cochlear implants — small devices that stimulate nerves inside the ear. 

The FDA didn’t approve them for just one ear until a couple of years ago. Last year, Caitlin got her insurance to approve one for her. She had surgery in December to insert the implant. And in January, an audiologist attached an external component to switch on Caitlin’s right-side hearing. 

Caitlyn: She said, okay, at some point, you’re gonna start hearing some beeps, just say yes when you can hear them. And my husband said my face just, out of nowhere, lit up, and I go, yes! It was streaming directly to my cochlear implant. And I definitely started tearing up. 

Dan: Then, two weeks later, Caitlin got an alert from the hospital on her phone. 

Caitlyn: And I open it up, and I immediately started having a panic attack. 

Dan: It was a bill for a hundred and thirty-nine thousand dollars. The full amount for Caitlin’s surgery. 

Which, given that Caitlyn had gotten her insurance company’s OK for the procedure in advance, was a pretty big surprise. NPR featured Caitlyn’s story recently for a series they do with our pals at KFF Health News. 

NPR HOST: Time now for the latest installment in our bill of the month series, where we dissect and explain confusing or outrageous medical bills.

Dan: I interviewed Caitlyn for that story. And we’re bringing you an expanded version here because Caitlin’s situation — well, it was a good story. And it made me curious about a couple things. 

It also reminded me of some good advice we’ve heard here before — and it reminded me of an important colleague and teacher. And the bottom line to Caitlyn’s story? Stand up for yourself. Don’t cave. Make the next call. 

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

To get her insurance company’s approval, Caitlyn had already spent a lot of time — and a lot of money — in the months before surgery. For instance … 

Caitlyn: To prove to insurance that a hearing aid wouldn’t work had to be fitted for a hearing aid and then do a couple hours of testing to prove, yep, it doesn’t help. 

Dan: There were reviews with audiologists, with her surgeon, and an MRI to make sure there wasn’t too much scar tissue for an implant to take. 

Caitlyn: That took a long time to get scheduled, get insurance to approve, pay for, then get back for another appointment. I counted up at one point — it’s like around eight or ten appointments that I had before the final, okay, let’s schedule surgery. 

Dan: And — you caught that, right? Where she mentioned she had to get her insurance to approve paying for the MRI? Every one of these preliminary steps cost money, and she had to wrangle with her insurance to get their OK. 

But of course even with her insurance saying yes, there were still copays, and deductibles, and what’s called co-insurance — where you pay a percentage of any bill from a hospital. 

Which meant Caitlyn was chipping away at what’s called her out-of-pocket maximum: The most she could be on the hook for in a given calendar year. The surgery got scheduled for December — the same calendar year as all those tests — and she checked to see what she might have to pay. 

Caitlyn: I looked at my little portal for insurance, I’m showing what’s left on my out-of-pocket max for the year is around 2,000, give or take, 200 dollars. 

Dan: She called the insurance company to confirm that estimate. And then she cranked up her due diligence. 

Caitlyn: I called the hospital, and I asked for the names of the anesthesiologist, the radiologist. I asked for all of the details of who is possibly going to be on my case. And then I turned around and I called insurance and I said, I want to make sure all of these physicians are going to be in network on this date. 

Dan: Caitlyn had done her homework. Probably more than a lot of us would have thought to do. I asked her: How’d you get so diligent? And first, like a lot of folks I’ve talked with, she said: Having a major health issue as a kid — losing her hearing — gave her an early heads-up to watch out. 

Caitlyn: A little bit was, uh, experience of my mom dealing with insurance battles with me growing up. I remember her running into issues with that. 

Can: And she’s got some experts in her life now. Her brother and her sister in law work in health care. One of her best friends is a healthcare lawyer and had some tips. 

Caitlyn: But honestly, I think a lot of it is I have anxiety, and so I was just really paranoid. 

Dan: The surgery went great. And a few weeks later, Caitlyn was in the audiologist’s office, getting that external component attached, and hearing on her right side for the first time in 15 years. Caitlyn says it all took some getting used to. 

Caitlyn: I remember those, like, first few days especially, it wasn’t really like I was hearing full sounds. It was kind of just different pitches. I wasn’t hearing the words and everything, it was just the breakdown of the different pitches. And they also were just so much higher than they should be.

Dan: So interesting. Radiolab may have already done this story — [but] I’m just like, let’s find out what that’s about. 

Caitlyn: I love Radiolab. 

Dan: Me too! Anyway, two weeks after she starts getting used to her new hearing situation, Caitlyn gets that alert on her phone. 

Caitlyn: And it tells me I have a new invoice. And I was like, oh, awesome! I’m not stressed at all, I did my due diligence. I know it’s gonna be expensive, but affordable. 

Dan: Except, right: It’s a hundred and thirty-nine thousand dollars! Six figures. The full amount for her surgery. You might remember, Caitlyn said she had a panic attack. That was literal: Heart palpitations, hyperventilating. 

It took her 20 or 30 minutes to get calm enough to start making calls. And she says her insurance told her they hadn’t paid because the hospital had neglected to send something important. 

Caitlyn: The itemized bill. Which has all the codes and everything, 

Dan: Caitlyn says she immediately asked the hospital, in writing to send her insurance the itemized bill, and she says sent a follow-up a week later. But her phone kept pinging with alerts about owing the hospital a hundred and thirty-nine thousand dollars. 

Caitlyn: The app so conveniently told me that I could sign up for monthly payments of 11,000 dollars a month, which is just so absurd. 

Dan: After two weeks, she asked her insurance: Do you have that itemized bill yet? They didn’t. So she called the hospital again. 

Caitlyn: The girl I spoke with said she was putting in a request to have it faxed to my insurance and that would take two to three weeks. And I said, hold on, it takes you two to three weeks to fax a document?

Dan: Answer: Apparently yes? And Caitlyn says even three weeks later, her insurance company still hadn’t gotten that itemized bill the hospital promised to fax. 

And all this time Caitlyn was still getting notices from the hospital billing department. And the latest one said, “past due.” She tried something new: So she called the hospital and demanded they send the itemized bill directly to her, immediately. Which they did. 

Caitlyn: So I turned around and faxed it to my insurance. 

Dan: Yeah but, this did not end things, not yet. Caitlyn says she got more notices labeled past due. She fought her way to a direct conversation with a supervisor. 

Caitlyn: They kept saying,‘well, a supervisor’s not available right now.’ I said, No, you’re finding a supervisor. I don’t care if they’re cutting their lunch short. I’m talking to a supervisor right now. I don’t care if I sound like a Karen. It’s been a long, long year already. 

Dan: Eventually, Caitlyn got a supervisor on the line and got the supervisor to get permission from a manager to stop sending her bills while the hospital waited for insurance to pay. 

By this time, it was late March, almost two months after that first bill gave Caitlyn that panic attack. Also by this time, Caitlyn had sent her bill to the folks at NPR and KFF Health News for that Bill of the Month feature they do. 

Caitlyn: I was like, I just need to vent. And so I submitted it just to vent it out. Never expecting anyone to reach out. 

Dan: But they did. And on April 9th, Caitlyn got a call from a regional Patient Service Center manager. 

Caitlyn: And she was super nice and tried to be really apologetic, but never actually accepting any blame. Or outright saying,‘we’re so sorry.’ Just said, ‘I’m sorry for your frustration, that sounds awful.’ 

Dan: She DID tell Caitlyn that the hospital had received payment from her insurance. And that Caitlyn could expect a final bill within a week. And that instead of a hundred thirty nine thousand, it was gonna be one thousand, nine hundred eighty-two dollars and twenty-five cents. 

Caitlyn: I said,‘yep, that actually matches what my insurance said,’ and she said,‘oh, you know what was left on your out-of-pocket, most people don’t,’ and I said,‘I’m very well versed in every dollar sign at this point in this entire case.’ 

Dan: Caitlyn says she got that bill four days later and paid it immediately. 

Caitlyn: And I saved the receipt of that, I have saved everything. It feels like it’s resolved, but there’s part of me that’s still waiting for the other shoe to drop 

Dan: So, Caitlyn’s story brings up a LOT. Of course, I loved the way she kept fighting, and ultimately took control of the situation. And I hated how she got trapped between these two big entities and how much time and stress the whole thing cost her. 

Because, you know, the hospital could’ve resolved this so quickly by just sending that itemized bill to Caitlyn’s insurance company. 

Caitlyn: And the hospital did not do that. They just turned around and billed me. Which was a stupid idea, since the insurance company is more likely to have the money. Not the legal assistant in Oklahoma. 

Dan: Caitlyn’s story raised a few questions, and brought back a lot of themes we’ve touched on before. We dug in also found some new tips, and some memories I want to share. That’s coming right up. 

This episode of An Arm and a Leg is a co-production of Public Road Productions and KFF Health News, a nonprofit newsroom covering healthcare in America. Their senior contributing editor, Elisabeth Rosenthal, reported Caitlyn’s story for KFF and NPR. She wrote a book about U.S. healthcare. It’s called “An American Sickness,” and it was an inspiration for this show. 

One question we ask sometimes on this show when we see a bill that’s so wildly ridiculous and unfair is: Can they freaking DO that?!? Like, is that even legal?

Like in this instance, can they just keep billing you while they’re apparently not even playing ball with your insurance? And: Do we have any legal weapons to fight back with? 

We asked a bunch of legal experts, and they pretty much all said: Yes, they probably can do that, and no, we probably don’t have any easy legal weapons we can fight with. But then I talked with Berneta Haynes. She’s a senior attorney with the National Consumer Law Center. 

And she had some practical thoughts that are super-worth sharing. She used to work for a nonprofit called Georgia Watch — that’s a state-level consumer protection group. They operated a hotline people could call for help. 

Berneta Haynes: Consumers and patients would call us with all kinds of hospital billing issues and medical debt issues. And we’ve had these kinds of weird questions where really, there wasn’t a particular lever at the legal level to actually help them. But if they feel like they’re experiencing what could be considered potentially an unfair business practice, it is totally within their right to file a complaint within their state A. G.’s office. 

Dan: The A.G. The state attorney general. Whoever’s doing you wrong, you can file a complaint. 

Berneta: Whether or not there’s any real hook that your AG could use to hold them accountable is always a question that’s up in the air. But even just the act of filing a complaint is very likely to get that entity, that company, to behave correctly. 

Dan: Basically, go up the chain. Whether to a government watchdog, or in the organization that’s bugging you. We’ve heard this before, but I loved the specifics that Berneta Haynes shared with me about her own experiences. 

Berneta: I will tell you, one of the mechanisms my husband and I have had to utilize repeatedly, not in a hospital context, but in various other service contexts is to reach out or threaten to reach out to the CEO or president. And it gets results every time. It gets results every time! 

Dan: Oh, and here’s the pro tip.

Berneta: My husband has repeatedly, when he’s had to do it, set up a LinkedIn premium account just to find the CEO and message them directly. 

Dan: Ooh, that’s good! 

Berneta: That has been the way we’ve gotten resolution on all kinds of issues related to insurance companies not wanting to do right by us. And so forth. 

Dan: So that was fun. Now, I do want to talk a little bit about what Caitlyn did, and what allowed her to do it. Caitlyn figures she made at least a dozen phone calls. And she says she’s lucky — privileged — to have a job where she could do that. Here’s the first thing she says she did once she got over that panic attack when the bill arrived. 

Caitlyn: I just went to my boss’s office and I said, I’m going to have to make some phone calls. There’s a problem with my hospital bill. She’s like, don’t worry about it. Do what you need to. 

Dan: And she had people in her corner, like the friend who’s a healthcare lawyer. And legal advice wasn’t the big thing that friend gave Caitlyn. 

Caitlyn: Most of the time I was just venting to her, and she was like,‘you need to keep pushing, like, keep going at them. Don’t let them win. Don’t roll over. Just keep pushing. They should be paying.’ 

Dan: And at that point, I told Caitlyn, she and her story were really reminding me of someone. 

Dan: There’s a reporter named Marshall Allen. He worked for ProPublica for a long time. He wrote on healthcare, and he wrote on stuff like this. And eventually he wrote a book, giving advice to people. And the title of the book was, Never Pay the First Bill. 

Caitlyn: Oh! 

Dan: And I told Caitlyn, Marshall was on my mind at the time because when Caitlyn and I talked in May, Marshall had just died, like less than two weeks before. And he was young — 52. He had three kids.

Caitlyn: So sad. 

Dan: Super, super, super sad. 

Dan: And of course the title of Marshall’s book — Never Pay the First Bill — that’s exactly how Caitlyn played things. She wasn’t going to think about paying anything until she got her questions answered. And it is worth remembering. 

When we were talking with legal experts, one thing a few of them said was: If you pay something that insurance was supposed to cover, and then insurance comes through, you’re supposed to get a refund. But who wants to chase that? 

Yeah. Don’t pay that first bill until you’ve made sure this is money you really owe. So, this seems like a good time to memorialize Marshall Allen a little bit. He liked to compare the healthcare system to a schoolyard bully. Here’s what he told me when he was on this show in 2021 when his book had just come out. 

Marshall Allen: What I think we need to do is stand up to the bully. We need to stop being afraid. We need to stop thinking someone else is going to stick up for us. And I wrote the book to equip and empower people to stand up to the bullies. 

And I think it’s tremendously empowering, but it’s hard, and standing up to a bully takes incredible courage. It takes fortitude. It takes persistence. You might get beat up in the process. There’s no guarantee of victory. It’s risky, right? But if we don’t try, we don’t have a chance. 

Dan: Marshall was a Christian minister before he became a reporter. He wrote a thoughtful essay about how his work as an investigative reporter fit with his faith. The gist was: The Bible is pretty clear that cheating people and exploiting them is wrong. 

And to me, it seems like there was an element of ministry– not just evangelism — to what he did after his book came out. Here’s what he told me in 2021: 

Marshall: I’ve started taking calls, and I’m responding to emails that I get from people and I’m saying,‘call me, let’s talk it through, let me help you with this. Let’s work through this together.’ And now I’m helping people work through their bills, work through these situations where they’re being cheated. It’s super satisfying and gratifying, so it’s my new hobby. 

Dan: He kept at it. He left ProPublica and took a job with the Office of the Inspector General at the federal department of Health and Human Services. And he published a newsletter — it was free, but he encouraged people to pay if they could, and he used the money to hire medical-bill advocates to help people with especially tricky cases. 

And Marshall was funny. I want to close out this episode with a story he told me the first time we talked, in 2019. It’s kind of an origin story. 

Marshall: So when I was 16 years old, um, I worked for this dinner theater in Golden, Colorado, where I grew up. One day I show up for work, and they’ve closed down the business. They owed me like three weeks of pay. 

The guy had closed the place without paying us and said,‘there’s no money. We shut down the business. We can’t afford to pay you. You’re out of luck.’ Well, we were all pretty angry about that. We were really angry because they had opened a sister dinner theater under the same company umbrella across town. And we all knew that. And we were like, well, if you can afford to keep your other place open, you can afford to pay us. And they said,‘sorry, kids, you’re out of luck.’ 

Dan: Marshall goes home, tells his mom what’s going on. 

Marshall: And my mom tells me you should sue him. I’m like, mom, what do you mean? I can barely drive. How can I sue the guy? She goes,‘you should take him to small claims court.’ So lo and behold, I go down, I fill out the paperwork. 

It’s a few paragraphs. It’s easy to fill out the paperwork in small claims court. I fill out the paperwork and turn in like 10 bucks at the time or whatever it costs. It’s not that expensive to file one of these cases. And I get a notice in the mail like six weeks later. And I have a court date, and I’m like geared up for this big Perry Mason moment. 

Dan: Perry Mason was a lawyer on this super old TV show — courtroom drama. But this wasn’t a courtroom.

Marshall: It’s more like a conference room and there’s some administrative hearing judge in there. And lo and behold, the owner of the company and his attorney had to show up in court there with me. 

And I thought we’d have a big argument all the administrative judge did is he read my few paragraphs on the little thing I’d written up and he looks over at the owner and he goes,‘is what this kid saying true?’And the owner’s like, ‘well, yeah.’ And the judge is like,‘give this kid his money.’ And I was like, This is amazing. You know what? Maybe the court system does actually work every now and then maybe every now and then the little guy can win. 

Dan: Marshall and I both stayed interested in how people can use the legal system to get our rights. I learned a lot from Marshall, and like a lot of people, I just loved his spirit. Marshall Allen, thank you. And here’s the end of my conversation with Caitlyn. 

Dan: Marshall Allen would have been extremely proud of you. 

Caitlyn: Yeah. 

Dan: Caitlyn has the final word here. 

Caitlyn: I got to the point where I was like, it’s my fight. I’ve got gasoline in the fire. I’m, I’m going for it. 

Dan: We’ll be back with a new episode in a few weeks. Till then, take care of yourself. 

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

KFF senior contributing editor Elisabeth Rosenthal reported Caitlyn’s story for KFF and NPR. She was editor in chief there when she invited me to collaborate with KFF to make this show’s second season, and we’ve been colleagues ever since. I’ve never felt so lucky or so thankful. 

Special thanks to Christopher Robertson at Boston University’s School of Law, Wendy Epstein of the College of Law at DePaul University, Sabrina Corlette at Georgetown University’s Center on Health Insurance Reforms, and Elisabeth Benjamin from the Community Service Society of New York for pitching in with legal expertise here. 

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

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

Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show. And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor. They allow us to accept tax-exempt donations. You can learn more about INN at INN.org. Finally, thank you to everybody who supports this show financially. You can join in any time at https://armandalegshow.com/support/. Thank you so much for pitching in if you can — and, thanks for listening.