Health care — and how much it costs — is scary. But you’re not alone with this stuff, and knowledge is power. “An Arm and a Leg” is a podcast about these issues, and is co-produced by KFF Health News.
Caitlyn Mai thought she did everything right. She called ahead to make sure her insurer would cover her cochlear implant surgery. She thought everything went according to plan but she still got a bill for the full cost of the surgery: more than $139,000.
What Caitlyn did next is a reminder of why a beloved former guest once said you should “never pay the first bill.” This episode of “An Arm and a Leg” is an extended version of the July installment of the series, created in partnership with NPR. Hey there — One morning when she was in eighth grade, Caitlin Mai did what she always did when she woke up.
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. Yeah, confusing. And then she tried getting out of bed.
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.
She had to learn how to walk all over again. That was eighth grade. Caitlyn made it through high school, in Tulsa where she grew up without a lot of accommodations.
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. Then, two weeks later, Caitlin got an alert from the hospital on her phone. 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.
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 .
.. 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.
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. She called the insurance company to confirm that estimate. And then she cranked up her due diligence.
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.
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.
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.
Me too! Anyway, two weeks after she starts getting used to her new hearing situation, Caitlyn gets that alert on her phone. 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 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.
After two weeks, she asked her insurance: Do you have that itemized bill yet? They didn’t. So she called the hospital again. 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. 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. 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. But they did. And on April 9th, Caitlyn got a call from a regional Patient Service Center manager.
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 says she got that bill four days later and paid it immediately. 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’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. The A.
G. The state attorney general. Whoever’s doing you wrong, you can file a complaint.
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.
Oh, and here’s the pro tip. 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.
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. And at that point, I told Caitlyn, she and her story were really reminding me of someone.
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.
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 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 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: 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 goes home, tells his mom what’s going on. Perry Mason was a lawyer on this super old TV show — courtroom drama.
But this wasn’t a courtroom. 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. Caitlyn has the final word here.
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 . Thank you so much for pitching in if you can — and, thanks for listening. “An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.
To keep in touch with “An Arm and a Leg,” . You can also follow the show on and the . And if you’ve got stories to tell about the health care system, the producers .
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