\n\t\t\t\t@danweissmann\t\t\t<\/a><\/p>\n\t\t\tHost and producer of “An Arm and a Leg.” Previously, Dan was a staff reporter for Marketplace and Chicago’s WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting.\t\t<\/p>\n
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\tEmily Pisacreta
\n\tProducer<\/p>\n
\tAdam Raymonda
\n\tAudio wizard<\/p>\n
\tEllen Weiss
\n\tEditor<\/p>\n
\t\t\t\t\tClick to open the Transcript\t\t\t\t<\/p>\n
\t\t\t\t\t\tTranscript<\/strong>: Fight Health Insurance \u2014 With Help From AI<\/strong>\t\t\t\t<\/p>\nNote: \u201cAn Arm and a Leg\u201d 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.<\/em><\/p>\nDan:<\/strong> Hey there\u2013<\/p>\nLet\u2019s start with introductions.<\/p>\n
Carolyn:<\/strong> My name is Carolyn DeSimone, and I have a super cute dog. His name is Professor Timbit. He\u2019s a professor because he\u2019s always researching something.<\/p>\nHolden Karau:<\/strong> My name is Holden Caro, and I\u2019m trying to make health insurance suck a little bit less<\/p>\nDan:<\/strong> 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 \u201c\u2018Make your health insurance company cry\u2019: One woman\u2019s fight to turn the tables on insurers.\u201d<\/p>\nThat woman was Holden. She works in tech, and the story was about a tool she\u2019d built, to help people fight health insurance: It writes appeal letters, using AI of course.<\/p>\n
She\u2019s made it available at a web site, \u201cfight health insurance dot com\u201d\u00a0<\/p>\n
I lose count of how many of you sent me that link, but thank you, <\/em>SO much.\u00a0<\/p>\nHolden 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.\u00a0<\/p>\n
The bookshelves in the background had \u2014 along with books \u2013lots little stuffed creatures. When I squinted, I could see a pikachu.<\/p>\n
Holden Karau:<\/strong> So there\u2019s a few Pikachu\u2019s actually. Um, and we have a, we have a stuffed poop. Um, it\u2019s a wombat poop. That\u2019s why it\u2019s square. Here.\u00a0<\/p>\nDan: <\/strong>And Lee can\u2019t help commenting when she sees the wombat poop because it\u2019s a brown, plushie cube with a face.\u00a0<\/p>\nCarolyn:<\/strong> Let me go grab it. I\u2019ll show you.\u00a0<\/p>\nDan:<\/strong> Lee can\u2019t help commenting when she sees the wombat poop: it\u2019s a brown, plushy cube, with a face.\u00a0<\/p>\nLee Romney:<\/strong> That\u2019s a very regular looking turd.<\/p>\nCarolyn:<\/strong> Wombats have square poops so they don\u2019t roll away.\u00a0<\/p>\nLee Romney:<\/strong> Oh, I didn\u2019t know that.\u00a0<\/p>\nCarolyn:<\/strong> Yeah, they have like special muscles in their buttholes to make square poops.<\/p>\nDan:<\/strong> This is the most fun zoom I\u2019ve ever been on, actually.<\/p>\nDan: <\/strong>And we were just getting started.\u00a0<\/p>\nThis is An Arm and a Leg, a show about why health care costs so freaking much, and what we can maybe do about it.\u00a0<\/p>\n
I\u2019m Dan Weissmann. I\u2019m a reporter, and I like a challenge.\u00a0<\/p>\n
So the job we\u2019ve chosen here is to take one of the most enraging, terrifying, depressing parts of American life, and bring you a show that\u2019s entertaining, empowering, and useful.<\/p>\n
As you might imagine, Holden\u2019s decision to create Fight Health Insurance draws on both her significant professional expertise \u2014 she\u2019s worked for Google, IBM, Apple, and now Netflix, and has written several technical books about programming \u2014\u00a0<\/p>\n
and her personal experience fighting health insurance\u2013 also significant.\u00a0<\/p>\n
And the reserves of anger and cussedness she got from those experiences.<\/p>\n
Holden Karau:<\/strong> I try and be a nice person, but health insurance does not bring out the best in me.\u00a0<\/strong><\/p>\nCarolyn:<\/strong> I don\u2019t think it brings out the best in anyone.\u00a0<\/strong><\/p>\nHolden Karau:<\/strong> Certainly, certainly no one that I know.<\/strong><\/p>\nDan:<\/strong> Holden\u2019s gender transition provided lots of experience.\u00a0<\/p>\nHolden Karau:<\/strong> Being a trans person in America, you have to navigate health insurance.<\/strong><\/p>\nDan:<\/strong> For instance, early on, Holden says she learned something that I didn\u2019t understand until I\u2019d been working on this show for a while:\u00a0<\/p>\nIf you get health insurance from your employer, it\u2019s pretty likely that your state\u2019s insurance laws don\u2019t apply to your plan.\u00a0<\/p>\n
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.\u00a0<\/p>\n
Holden Karau:<\/strong> When did I learn about ERISA? I think I knew what an ERISA plan was from IBM.\u00a0<\/strong><\/p>\nCarolyn:<\/strong> Oh yeah, cause IBM got you boobs.<\/strong><\/p>\nHolden Karau:<\/strong> Yeah. IBM paid for my boobs. Originally I was going to get a tattoo saying like sponsored by, but \u2013 I \u2013 no.\u00a0<\/strong><\/p>\nDan:<\/strong> Holden says her fighting-insurance game \u2014 and those reserves of anger\u2013 leveled up in 2019.\u00a0<\/p>\nHolden Karau:<\/strong> Yeah. When I got hit by a car is when I like started reading health insurance regulations because I didn\u2019t have a lot else to do and it was also really important that I figure it out.<\/strong><\/p>\nDan: <\/strong>Holden had been riding a brand-new Vespa. She was on 16th Street in San Francisco\u2019s Mission District. Carolyn picks up the story here\u2026<\/p>\nCarolyn:<\/strong> A woman pulled out of the parking lot of the Safeway to turn left without looking.\u00a0<\/strong><\/p>\nHolden Karau:<\/strong> Yeah, across four lanes of traffic.<\/strong><\/p>\nDan:<\/strong> Holden says she had two broken wrists, and some broken bones in her legs. It didn\u2019t take long for her to start thinking about medical bills. Even though she was on very strong painkillers.<\/p>\nHolden Karau:<\/strong> I think while I was still on fentanyl, I was thinking about insurance.\u00a0<\/strong><\/p>\nDan:<\/strong> <\/strong>She was thinking, this is gonna be\u2026 a lot.<\/p>\nCarolyn:<\/strong> Out of the trauma bay, but possibly not when you were out of the ER, was the first time we thought about, what\u2019s this gonna cost?\u00a0<\/strong><\/p>\nDan:<\/strong> But they say the actual haggling with insurance didn\u2019t 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.<\/p>\nHolden Karau:<\/strong> They really wanted to send me somewhere really, really shitty.<\/strong><\/p>\nCarolyn:<\/strong> We looked at the reviews of them.\u00a0<\/strong><\/p>\nHolden Karau:<\/strong> Yeah. And it\u2019s like, they\u2019re actively being investigated by the state\u2026\u00a0<\/strong><\/p>\nCarolyn:<\/strong> \u2026for like hitting their patients with things.\u00a0<\/strong><\/p>\nHolden Karau:<\/strong> Yeah. It was like, no, I don\u2019t want to go there.<\/strong><\/p>\nDan:<\/strong> 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\u2019d actually get. By that time, Carolyn says, Holden was ready to go right at it.\u00a0<\/p>\nCarolyn:<\/strong> Once you got to the rehab, I think you started reading the forms for fun.\u00a0<\/strong><\/p>\nHolden Karau:<\/strong> I didn\u2019t have a lot going on at that point, and I was still on opiates, but the opiates were less strong, so my brain was starting to work again.\u00a0<\/strong><\/p>\nCarolyn:<\/strong> You got bored.<\/strong><\/p>\nHolden Karau:<\/strong> Yeah.<\/strong><\/p>\nDan:<\/strong> Holden says her brain was working, but not her body. She couldn\u2019t 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.<\/p>\nHolden Karau:<\/strong> it ended up working out okay, and part of that was my willingness to just, like, take things to an unreasonable length. I was like, really, I have nothing to lose here, so I will sue you. I am bored.<\/strong><\/p>\nDan:<\/strong> Holden says it helped that she could afford a good lawyer.\u00a0<\/p>\nEspecially because there were more fights ahead. She says she had to fight for special crutches \u2013 cause she couldn\u2019t use regular ones with broken wrists \u2014 and for more physical therapy when she got home.\u00a0<\/p>\n
And there was an epic fight to make sure medical bills didn\u2019t completely devour any settlement from the driver\u2019s car insurance. This was a next-level legal education.<\/p>\n
Holden says it took three years to get all the legal issues resolved. And, Meanwhile, she discovered that she\u2019d developed a super-power \u2014 or call it a special interest.\u00a0<\/p>\n
She noticed: If someone at a party, say, started talking about a problem they were having with health insurance, she was ready \u2014 eager\u2013 to take them down the rabbit hole.\u00a0<\/p>\n
Holden Karau:<\/strong> they\u2019d be like, complaining about a thing, and it\u2019s like, oh no, like, yeah, yeah, yeah, this sucks, and they totally do that, but like, there\u2019s actually a thing that you can do, it was like, okay, like, this is a thing that I know how to do. I like helping people<\/strong><\/p>\nDan:<\/strong> But conversations at parties weren\u2019t much of an outlet.<\/p>\nHolden Karau:<\/strong> Like, I don\u2019t get invited to a lot of parties, because not a lot of people are like, I would love to hang out with that lady that keeps talking about ERISA regulations or the Affordable Care Act.<\/strong><\/p>\nDan:<\/strong> And then, in January of 2023, Holden was talking with a friend at a tech conference.<\/p>\nHolden Karau:<\/strong> He has family that also has perhaps a non standard level of experience with insurance, and so like we were talking about generative AI\u2026\u00a0<\/strong><\/p>\nDan:<\/strong> Generative AI. Chat GPT had been released less than two months before.. Holden and her friend ended up thinking.. .<\/p>\nHolden Karau:<\/strong> You know what, we could use this to actually, like, make the world suck a little less.<\/strong><\/p>\nDan:<\/strong> 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.<\/p>\nHolden Karau:<\/strong> There\u2019s, there\u2019s different kinds of motivation, right? There\u2019s like, uh, deadline driven, uh, programming, which is like when you agree to give a talk at a conference, you\u2019re like, okay, I need to do this by this date. Otherwise I\u2019m going to look really bad in front of a bunch of people. Uh, so I\u2019ll do that a lot, but the other equally strong motivation, I think, is hate. And I hate insurance companies. Because they\u2019ve just like, they\u2019ve been so mean to me and my friends.\u00a0<\/strong><\/p>\nDan:<\/strong> Then, a few months later, another conference provided an opportunity to combine those motivations: A hackathon \u2014 a competition where engineers and developers\u00a0 get a limited amount of time to put a project together. .\u00a0<\/p>\nHolden Karau:<\/strong> I was like, okay, I\u2019m gonna work on this for the hackathon.\u00a0<\/strong><\/p>\nDan:<\/strong> That gave her a deadline: 30 days. Her project came in third.\u00a0<\/p>\nHolden Karau:<\/strong> which, not fantastic, but, like, not terrible, you know.<\/strong><\/p>\nDan:<\/strong> Third out of more than 50. Plus, it worked! Kind of.\u00a0<\/p>\nHolden Karau:<\/strong> So like it would say things like, this procedure should be covered because of the llama llama virus, and it\u2019s just like, oh, well that, that\u2019s not a real thing, but like, good try, good try, right? And it was like, you know, like, it\u2019s interesting, and like, it kind of sort of works, but it\u2019s also, it\u2019s not great, right?<\/strong><\/p>\nDan:<\/strong> Getting to the next stage would require a new approach, and some motivation \u2014 more rage \u2014 which came from a surprising source.. That\u2019s next\u2026\u00a0<\/p>\nThis episode of An Arm and a Leg is a co-production with KFF Health News. That\u2019s a national nonprofit newsroom producing in-depth journalism about health issues. Their reporters do amazing work \u2014 and win all kinds of awards every year. We\u2019re honored to work with them.<\/p>\n
So Holden came out of that hackathon with something that kind of worked. Kind of.\u00a0<\/p>\n
Then she says she found herself in a fight on behalf of someone else in her household.\u00a0\u00a0<\/p>\n
Holden Karau:<\/strong> Timbit, our dog, who\u2019s amazing, I love him, had a bunch of dental work done and the pet health insurance people were jerks about that.<\/strong><\/p>\nCarolyn:<\/strong> They said he didn\u2019t need anesthesia to have teeth pulled. They rejected the anesthesia. He\u2019s 11 pounds. He can\u2019t be awake during\u2026<\/strong><\/p>\nHolden Karau:<\/strong> I don\u2019t even know if like, don\u2019t, I don\u2019t know anyone can be awake for that. And so I was like, okay, cool, how can I put the screws to them? Because you were mean to my dog. I\u2019m used to health insurance companies being mean to me to the extent that I\u2019m almost numb to it at this point. But like, my dog is precious and perfect. I read the plan documents because I\u2019m a nerd. And like, this is not, Your obligation, like, you are obligated to do more. You would have to prove that this is not necessary, and I don\u2019t think you can do that.<\/strong><\/p>\nDan:<\/strong> <\/strong>Holden says she also read up on state regulations for pet insurance, and let the company know she\u2019d found grounds for some potentially-serious challenges.<\/p>\nHolden Karau: <\/strong>and that, along with, uh, some other, perhaps less than polite words, did result in them changing their opinion about whether or not he should be awake for getting his teeth pulled out.\u00a0<\/strong><\/p>\nDan:<\/strong> Well done. Well done.\u00a0<\/strong><\/p>\nHolden Karau:<\/strong> And then it s was like, okay, you know what? Yeah, I should put in the time to finish this, right?<\/strong><\/p>\nDan:<\/strong> Finish the tool to fight insurance companies.<\/p>\nHolden Karau:<\/strong> Like, I\u2019ve got this thing that\u2019s like kind of half baked, but I should, I should take this over the finish line. Like, screw these insurance companies.<\/strong><\/p>\nDan:<\/strong> To do that, she was going to need some data to train her AI \u2014 the technical term is \u201clarge language model\u201d \u2014 or \u201cmodel\u201d for short.\u00a0<\/p>\nHolden Karau:<\/strong> Because the big problem, and part of why we got this like, llama llama virus thing, is like when you don\u2019t have data to train a model, it\u2019s bad, right? It\u2019s like garbage in, garbage out. And this is also part of why like, a lot of large models on the internet are bad, they\u2019re like trained on Reddit..\u00a0<\/strong><\/p>\nDan:<\/strong> Yeah, so they learn HOW people use language. But they don\u2019t learn facts. They\u2019re like a really smart 18 year old who hasn\u2019t done the reading but is good at bullshitting. Because they know what \u201can answer\u201d sounds like in this context.<\/p>\nHolden 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\u2019s regulated by the state of California, you can request an independent medical review from the Department of Insurance.\u00a0<\/p>\n
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.<\/p>\n
Holden Karau:<\/strong> And, like, that\u2019s the information that you want, right? You want to know, like, for a diagnosis and procedure, why is this necessary? Why should the insurance company have to cover this?<\/strong><\/p>\nDan:<\/strong> And all that information was in this data \u2014 for many thousands of appeals, many thousands of decisions.<\/p>\nHolden Karau:<\/strong> I found the independent medical review data. And I was like, okay, cool. I can use this to make the model better.<\/strong><\/p>\nDan:<\/strong> Holden started whipping the model into shape. After about six months, she paid a developer to work up a web version \u2014 something that you don\u2019t have to be a tech person to actually use. She bought hardware \u2014 servers. All told, she thinks she spent maybe ten thousand dollars, plus a year of nights and weekends.\u00a0<\/p>\nIn August of this year, she had something ready to show the world.<\/p>\n
She emailed a local reporter who had been writing about health insurance.<\/p>\n
Holden Karau:<\/strong> I\u2019m like, this local kid who\u2019s been working on this thing. It seems like it might be, like, kinda on your beat. If not, like, absolutely no stress, but, like, let me know. And if you wanna chat about it, like, I\u2019m happy to jump on my Vespa and like, swing over and I can talk with you about it and show it to you. And, um, and she emailed me back and was like, yeah, that sounds cool.<\/strong><\/p>\nDan:<\/strong> What Holden showed that reporter \u2014 pretty much what you see now at fight health insurance dot com \u2014 isn\u2019t a magic wand. It doesn\u2019t do EVERYTHING for you.<\/p>\nYou\u2019ve gotta make a scan of the denial letter from your insurance company, and run it through \u201coptical character recognition\u201d \u2014 turn it from an image of text into actual text. Oh, and zap personally-identifiable information \u2014 like your name and address \u2014 from the document. So none of that gets captured by any machines.<\/p>\n
You can also write up a narrative with any details \u2014 that\u2019s 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.\u00a0<\/p>\n
You feed it everything, and it gives you back a draft of an appeal letter \u2014 actually, more than one, so you can pick and choose, and make edits.\u00a0<\/p>\n
So, there\u2019s some homework. And it all still looks kinda early-stage. The site isn\u2019t super-pretty. And you know how early, not-quite-officially-released software gets called a \u201cbeta\u201d release?\u00a0 This one says \u201calpha\u201d \u2014 earlier than that.\u00a0<\/p>\n
So, no guarantees. But it\u2019s something.\u00a0<\/p>\n
Holden showed it to that reporter, and the result was the article that a bunch of listeners started sending me.<\/p>\n
By the time I talked with Holden and Carolyn, about three weeks later, Holden said about three hundred people had used it. She\u2019d been keeping an eye on how it performed.<\/p>\n
Holden Karau:<\/strong> It seems to generate things that look good, right? Which, this is important to me. Um, I also get emails from people saying like, cool, thank you, thanks for doing this, um, so that\u2019s pretty rad.\u00a0<\/strong><\/p>\nBut like, I assume that you get some of the same stories there\u2019s some people where they reach out, they\u2019re like, Hey, this is my specific situation. Like, what can I do? And it\u2019s often just like, I wish I could help you. But like, this is just completely fucked.<\/strong><\/p>\nDan:<\/strong> I do get those, of course. It never gets easier. [And, I should say: If you\u2019ve written me and I haven\u2019t responded, don\u2019t assume it\u2019s because your situation is completely fucked. It\u2019s just as likely that I can\u2019t keep up with my email, but I REALLY APPRECIATE you writing to me, no matter what. I learn so much. Including things that don\u2019t suck, like when a bunch of you wrote to me about Holden and her project.]<\/p>\nWhen we talked, Holden said she hadn\u2019t gotten much information about whether these appeals were working. Insurance companies generally give themselves a month to respond to appeals. And it hadn\u2019t been that long.<\/p>\n
Meanwhile, there was the question of where this project could go next.\u00a0<\/p>\n
Holden Karau:<\/strong> Do I do it for like, more than evenings and weekends?Or do I do it for evenings and weekends? And I don\u2019t, I don\u2019t know what the answer to that is yet.<\/strong><\/p>\nDan:<\/strong> Holden had ideas about ways it could earn income \u2014 maybe by charging doctors and other providers, but keeping the service free for patients?\u00a0<\/p>\nWhen I asked how much it would cost to take Fight Health Insurance to the next level, make it available and useful to \u2014 you know, everybody who might need it\u2013 and keep it up to date, and keep it reliable and stable \u2014 she started thinking, and the numbers kept going up: a hundred thousand, two, four, five, more.<\/p>\n
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.\u00a0<\/p>\n
Holden Karau:<\/strong> there\u2019s some people who, who like sent in their appeals and, and things got approved, and that\u2019s pretty awesome. I\u2019m, I\u2019m pretty stoked with that. I guess the, the other thing is like, people seem generally positive and happy. So yeah\u2026<\/strong><\/p>\nDan:<\/strong> Thank you for this thing that didn\u2019t exist before.<\/strong><\/p>\nHolden Karau:<\/strong> when the alternative is just giving up hope, like, this is so much better than just going, like, God damn it.<\/strong><\/p>\nDan:<\/strong> 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\u2019s response was pretty immediate.<\/p>\nHolden Karau:<\/strong> What are you doing? No, no. They are gonna like, they\u2019re, hm\u2026 they\u2019re gonna lead you down the path that you are trying really hard to avoid.<\/strong><\/p>\nDan:<\/strong> Charge patients money, maybe harvest their data for who-knows-what icky purposes. Basically turn into another shark.\u00a0<\/p>\nHolden Karau:<\/strong> This is probably just my naivety, but I really I have this belief that the consumer version should be free always. And so one of the tricks is finding someone that agrees with that, who\u2019s willing to give us money. Because, otherwise, It\u2019s like, nah, it\u2019s cool. But then the second question is, like, is there a way to shift the economics of denials, such that, like, insurance companies, like, it just costs them more to be dicks, right?<\/strong><\/p>\nDan:<\/strong> Assuming she finds the right kind of partner, there\u2019s a question of how Fight Health Insurance would earn income to keep itself going.\u00a0<\/p>\nShe\u2019s still interested in the idea of selling a paid version to doctors and other practitioners, and when we talked she\u2019d heard from some folks in that world.\u00a0<\/p>\n
Holden Karau:<\/strong> Of the professionals reaching out, a lot of them were from the mental health field. That\u2019s something where, that\u2019s an area that I feel strongly about. Like, I would not be here if it was not for access to mental health.\u00a0<\/strong><\/p>\nDan:<\/strong> Meanwhile, she says she\u2019s squeezing in about a day a week for the project, in between her full-time job and the rest of her life.<\/p>\n