1 week Ago By Dan Weissmann
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.
Meet Holden Karau: a San Francisco Bay Area software engineer who created an AI tool to help appeal insurance denials. Her project, , is a labor of love. It draws on her tech expertise and years of experience fighting health insurance: for gender-affirming care, for rehab after getting hit by a car, and even for her dog, Professor Timbit.
host Dan Weissmann talked with Karau about what it took to build the tool, how it works, and what she hopes comes next. Hey there– Let’s start with introductions. My name is Carolyn DeSimone, and I have a super cute dog.
His name is Professor Timbit. He’s a professor because he’s always researching something. My name is Holden Caro, and I’m trying to make health insurance suck a little bit less Carolyn and Holden are married, and I talked with them in September because listeners had been sending me links to a story in the San Francisco Standard, with the headline “‘Make your health insurance company cry’: One woman’s fight to turn the tables on insurers.
” That woman was Holden. She works in tech, and the story was about a tool she’d built, to help people fight health insurance: It writes appeal letters, using AI of course. She’s made it available at a web site, “fight health insurance dot com” I lose count of how many of you sent me that link, but SO much.
Holden and Carolyn live in San Francisco. I talked to them on Zoom. A local reporter, Lee Romney, helped set up mics for the two of them in their living room.
The bookshelves in the background had — along with books –lots little stuffed creatures. When I squinted, I could see a pikachu. So there’s a few Pikachu’s actually.
Um, and we have a, we have a stuffed poop. Um, it’s a wombat poop. That’s why it’s square.
Here. And Lee can’t help commenting when she sees the wombat poop because it’s a brown, plushie cube with a face. Let me go grab it.
I’ll show you. Lee can’t help commenting when she sees the wombat poop: it’s a brown, plushy cube, with a face. That’s a very regular looking turd.
Wombats have square poops so they don’t roll away. Oh, I didn’t know that. Yeah, they have like special muscles in their buttholes to make square poops.
This is the most fun zoom I’ve ever been on, actually. And we were just getting started. This is An Arm and a Leg, a show about why health care costs so freaking much, and what we can maybe do about it.
I’m Dan Weissmann. I’m a reporter, and I like a challenge. So the job we’ve chosen here is to take one of the most enraging, terrifying, depressing parts of American life, and bring you a show that’s entertaining, empowering, and useful.
As you might imagine, Holden’s decision to create Fight Health Insurance draws on both her significant professional expertise — she’s worked for Google, IBM, Apple, and now Netflix, and has written several technical books about programming — and her personal experience fighting health insurance– also significant. And the reserves of anger and cussedness she got from those experiences. Holden’s gender transition provided lots of experience.
For instance, early on, Holden says she learned something that I didn’t understand until I’d been working on this show for a while: If you get health insurance from your employer, it’s pretty likely that your state’s insurance laws don’t apply to your plan. Instead, your plan gets regulated by the federal department of Labor, under a federal law called ERISA. Holden knows a LOT about ERISA and had to think for a minute about when she picked it up.
Holden says her fighting-insurance game — and those reserves of anger– leveled up in 2019. Holden had been riding a brand-new Vespa. She was on 16th Street in San Francisco’s Mission District.
Carolyn picks up the story here...
Holden says she had two broken wrists, and some broken bones in her legs. It didn’t take long for her to start thinking about medical bills. Even though she was on very strong painkillers.
She was thinking, this is gonna be...
a lot. But they say the actual haggling with insurance didn’t start for a few days, when it was time for Holden to leave the hospital. And head to rehab.
Her insurance, she says, had a place in mind. Carolyn said she pitched in to help get Holden to a better rehab, but then they say there were battles over how much treatment she’d actually get. By that time, Carolyn says, Holden was ready to go right at it.
Holden says her brain was working, but not her body. She couldn’t hold a laptop, or really type. Or get out of bed to pick up her phone if it fell to the floor.
But even with broken wrists, she was ready to fight for the rehab treatment she needed. Holden says it helped that she could afford a good lawyer. Especially because there were more fights ahead.
She says she had to fight for special crutches – cause she couldn’t use regular ones with broken wrists — and for more physical therapy when she got home. And there was an epic fight to make sure medical bills didn’t completely devour any settlement from the driver’s car insurance. This was a next-level legal education.
Holden says it took three years to get all the legal issues resolved. And, Meanwhile, she discovered that she’d developed a super-power — or call it a special interest. She noticed: If someone at a party, say, started talking about a problem they were having with health insurance, she was ready — eager– to take them down the rabbit hole.
But conversations at parties weren’t much of an outlet. And then, in January of 2023, Holden was talking with a friend at a tech conference. Generative AI.
Chat GPT had been released less than two months before.. Holden and her friend ended up thinking.
. . Could use these new generative-AI tools to fight health insurance.
Like by having it write appeal letters when claims got denied. An idea was one thing. Making something would take more.
Holden used what she knew about herself to make that happen. Then, a few months later, another conference provided an opportunity to combine those motivations: A hackathon — a competition where engineers and developers get a limited amount of time to put a project together. .
That gave her a deadline: 30 days. Her project came in third. Third out of more than 50.
Plus, it worked! Kind of. Getting to the next stage would require a new approach, and some motivation — more rage — which came from a surprising source..
That’s next...
This episode of An Arm and a Leg is a co-production with KFF Health News. That’s a national nonprofit newsroom producing in-depth journalism about health issues. Their reporters do amazing work — and win all kinds of awards every year.
We’re honored to work with them. So Holden came out of that hackathon with something that kind of worked. Kind of.
Then she says she found herself in a fight on behalf of someone else in her household. Holden says she also read up on state regulations for pet insurance, and let the company know she’d found grounds for some potentially-serious challenges. Finish the tool to fight insurance companies.
To do that, she was going to need some data to train her AI — the technical term is “large language model” — or “model” for short. Yeah, so they learn HOW people use language. But they don’t learn facts.
They’re like a really smart 18 year old who hasn’t done the reading but is good at bullshitting. Because they know what “an answer” sounds like in this context. Holden needed to train her model on a bunch of factual data for health insurance appeals and denials.
And she found it. Thanks to the California Department of Insurance. If your insurance denies a claim, and it’s regulated by the state of California, you can request an independent medical review from the Department of Insurance.
Which decides whether your procedure was medically necessary. Every decision gets published online. Describing the facts.
The diagnosis. The procedure. And the reasoning behind the decision.
And all that information was in this data — for many thousands of appeals, many thousands of decisions. Holden started whipping the model into shape. After about six months, she paid a developer to work up a web version — something that you don’t have to be a tech person to actually use.
She bought hardware — servers. All told, she thinks she spent maybe ten thousand dollars, plus a year of nights and weekends. In August of this year, she had something ready to show the world.
She emailed a local reporter who had been writing about health insurance. What Holden showed that reporter — pretty much what you see now at fight health insurance dot com — isn’t a magic wand. It doesn’t do EVERYTHING for you.
You’ve gotta make a scan of the denial letter from your insurance company, and run it through “optical character recognition” — turn it from an image of text into actual text. Oh, and zap personally-identifiable information — like your name and address — from the document. So none of that gets captured by any machines.
You can also write up a narrative with any details — that’s optional, but seems like a good idea. And you can upload your documents from your insurance company that describe your benefits. That also seems smart.
You feed it everything, and it gives you back a draft of an appeal letter — actually, more than one, so you can pick and choose, and make edits. So, there’s some homework. And it all still looks kinda early-stage.
The site isn’t super-pretty. And you know how early, not-quite-officially-released software gets called a “beta” release? This one says “alpha” — earlier than that. So, no guarantees.
But it’s something. Holden showed it to that reporter, and the result was the article that a bunch of listeners started sending me. By the time I talked with Holden and Carolyn, about three weeks later, Holden said about three hundred people had used it.
She’d been keeping an eye on how it performed. I do get those, of course. It never gets easier.
[And, I should say: If you’ve written me and I haven’t responded, don’t assume it’s because your situation is completely fucked. It’s just as likely that I can’t keep up with my email, but I REALLY APPRECIATE you writing to me, no matter what. I learn so much.
Including things that don’t suck, like when a bunch of you wrote to me about Holden and her project.] When we talked, Holden said she hadn’t gotten much information about whether these appeals were working. Insurance companies generally give themselves a month to respond to appeals.
And it hadn’t been that long. Meanwhile, there was the question of where this project could go next. Holden had ideas about ways it could earn income — maybe by charging doctors and other providers, but keeping the service free for patients? When I asked how much it would cost to take Fight Health Insurance to the next level, make it available and useful to — you know, everybody who might need it– and keep it up to date, and keep it reliable and stable — she started thinking, and the numbers kept going up: a hundred thousand, two, four, five, more.
A few weeks later, Holden came to Chicago, where I live, for a conference. I went to meet her! And I got an update from her. She was still puzzling over how Fight Health Insurance could grow.
She said when she asked a friend with experience in the startup world for advice about talking with business or venture capital folks, the friend’s response was pretty immediate. Charge patients money, maybe harvest their data for who-knows-what icky purposes. Basically turn into another shark.
Assuming she finds the right kind of partner, there’s a question of how Fight Health Insurance would earn income to keep itself going. She’s still interested in the idea of selling a paid version to doctors and other practitioners, and when we talked she’d heard from some folks in that world. Meanwhile, she says she’s squeezing in about a day a week for the project, in between her full-time job and the rest of her life.
For now, Holden’s taking things one step at a time. Can I please say, Amen. If you give Holden’s tool a try, I am SUPER curious to hear how it turns out.
If you do, I should mention: The privacy policy on Holden’s site says that if the enterprise ever, say, gets sold, then whoever buys it could end up with any data you give it. So Holden actually suggests: maybe create a temporary email address for working with her site. Just in case some shark ends up with this stuff.
(It needs AN email to send you its results. The site asks for a name too. You could consider using a fake one.
) We’ll have links to fight health insurance — and to instructions for creating a temporary email address — wherever you’re listening to this. And we’ll be back in a few weeks with a brand-new episode. Till then, take care of yourself.
This episode of An Arm and a Leg was produced by me, Dan Weissmann, with help from Emily Pisacreta — and edited by Ellen Weiss. Adam Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions.
Gabrielle Healy is our managing editor for audience. Lynne Johnson is our operations manager. Bea Bosco is our consulting director of operations.
An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America and a core program at KFF, an independent source of health policy research, polling, and journalism. Zach Dyer is senior audio producer at KFF Health News.
He’s editorial liaison to this show. And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor. They allow us to accept tax-exempt donations.
You can learn more about INN at INN.org. Finally, thank you to everybody who supports this show financially.
You can join in any time at arm and a leg show, dot com, slash: support. Thank you so much for pitching in if you can — and, thanks for listening. “An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.
To keep in touch with “An Arm and a Leg,” . 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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