AILSA CHANG, HOST:
Once a month, NPR and Kaiser Health News take a close look at medical bills that you send us. Today, we're going to hear about a young grad student who worked out a way to afford life-changing surgery, but not without a fight. Elisabeth Rosenthal, the editor-in-chief of Kaiser Health News, is here to tell us more. Welcome.
ELISABETH ROSENTHAL: Great to be here.
CHANG: So this procedure that we're going to talk about is gender confirmation surgery. This is where a person surgically changes his or her external sex organs. And this story here is about someone going from male to female, right?
CHANG: But it sounds like her medical bills tell a much larger story that a lot of us can relate to.
ROSENTHAL: Sure. I mean, gender confirmation surgery is obviously very rare, but the kinds of billing problems Wren Vetens ran into are almost universal when you seek elective surgery in this country these days.
CHANG: OK. Let's hear more about her experience. This is reporter Bram Sable-Smith.
BRAM SABLE-SMITH, BYLINE: Wren Vetens realized she wanted confirmation surgery the way a lot of 22-year-olds realize a lot of things.
WREN VETENS: I had been having an argument with my mom.
SABLE-SMITH: OK. So her mom says it was not an argument, but they were talking about pronouns. Ren was raised male. In college, she began identifying as nonbinary, using the gender-neutral they pronoun. Her mom was accepting, but from time to time, she'd slip up. Ren would correct her. And this time, it led to a discussion. Did Ren identify as female? Did Ren want to have surgery or take feminizing hormones?
VETENS: And I said, no, no, no, no, no. And then I immediately went upstairs and pulled up Google and started actually researching. And I realized, oh, yeah, I want this (laughter).
SABLE-SMITH: Right around the same time, Ren was applying to Ph.D. programs in theoretical physics. She had a few offers, but her mom, Kim Moreland, says one school stood out - The University of Wisconsin.
KIM MORELAND: It's a great program, but they also are friendly to transgender students.
SABLE-SMITH: Graduate students at the university are covered by the state employee insurance. And in the summer of 2016, the board that oversees that insurance decided it needed to cover transgender health to comply with the Affordable Care Act. Wren matriculated that fall. But soon after, Wisconsin's governor, Scott Walker, asked the insurance board to reconsider. And that December, they voted not to cover transgender care. The decision stung, but Wren realized there was another option. The school's undergraduate insurance explicitly covers confirmation surgery again. Again, Kim Moreland.
MORELAND: It's a big print. It's right out there in the front. It says up to $25,000 for transgender surgery.
SABLE-SMITH: So Wren paid to switch to the undergraduate insurance. And she was one of the very first to get a surgery date at the University of Wisconsin Hospital - December 27, 2017. After two years of planning and many more years of gender dysphoria, Wren says it felt like a light at the end of a tunnel. And then...
VETENS: And then, in November, I got a call from the hospital saying that the bill they would submit to insurance was on the order of $100,000.
SABLE-SMITH: That would mean even with insurance, Wren would be on the hook for $75,000 for a surgery that typically only costs about $20,000. Wren's mother, Kim, is an OBGYN. She's got experience working with hospital billing departments and insurance companies. And she coached Wren to push back. Eventually, the hospital gave a new price - $20,000. But they'd have to pay it all out of pocket. That seemed reasonable. Wren's surgery was just weeks away, and they had to pay to keep the date. She figured she could deal with the money after. She called the hospital, credit card in hand.
MORELAND: She said, OK, give me the number. And I said, well, do you have like a written down bill of sale, what you're giving me when I give you this $20,000? He had no idea.
SABLE-SMITH: Eventually, she did get an itemized bill. She paid it, flew to Wisconsin, and Wren got the surgery. It was a success, and for Wren, a huge relief.
VETENS: So in a way, it was like being born again.
SABLE-SMITH: But then, they got a bill. Kim Moreland.
MORELAND: The hospital wanted another $13,000.
SABLE-SMITH: The hospital had billed Wren's insurance $92,000 for the surgery. The insurance paid $26,000, and the hospital was billing Wren for some of the remainder, even though they had an itemized receipt saying they'd already paid.
MORELAND: They acknowledged that they'd already paid money, but they thought that was a down payment.
SABLE-SMITH: It was a mistake. Wren never had to pay it. But that mistaken bill gave Kim an idea.
MORELAND: I saw that, and I thought, OK, now the insurance knows that we had surgery there.
SABLE-SMITH: Meaning the surgery was in the insurance system. So Kim helped Wren fill out an appeal, submitting a receipt for reimbursement. And a couple weeks later, a check arrived for $18,000. For NPR News, I'm Bram Sable-Smith in Wisconsin.
CHANG: OK. An $18,000 check, I mean, that sounds like good news, right?
ROSENTHAL: Well, sure. But that check arrived only after a very long fight and after a journalist called the insurer asking about the reimbursement issue. So not so fast.
CHANG: Oh. I guess we don't all have journalists fighting for us on our behalf.
ROSENTHAL: Right. We need a system that works for everyone the first time around without all these hassles and interventions.
CHANG: So what can we learn from Vetens' story?
ROSENTHAL: Well, the big lesson is that there's no real price for anything in our system. I mean, everything is the product of negotiation. I mean, remember, she got estimates that ranged from $19,000 to $100,000.
CHANG: That's a crazy disparity.
ROSENTHAL: Well, it's crazy. And if you're trying to figure out what you should pay, how can you even take the first steps with that kind of range, right? So what happened was the price estimates she'd got online were at the $19,000. And those are cash prices, so they didn't tell her much about what she, in fact, would owe. And in her case, the hospital charged her the insurance price, which was closer to the $100,000.
CHANG: Why didn't the hospital charge her the out-of-pocket cash price?
ROSENTHAL: Well, because the hospitals want to charge as much as they can. And they knew she had insurance, so they thought, well, we'll go with the $100,000, I assume.
CHANG: So what did Vetens do? I mean, besides have a journalist ask a lot of questions on her behalf, what does it teach us about what other people can do about really high medical bills?
ROSENTHAL: She did some really smart things. I mean, first of all, her mom was a physician, right?
CHANG: Oh, that helps (laughter).
ROSENTHAL: So she had someone in the corner arguing on her behalf.
CHANG: Right. Yeah.
ROSENTHAL: But also, she enlisted the help of her surgeon. And your doctors are really on your side in this. And the hospitals need to listen to their staff surgeons. They're the ones who bring in the business. So her surgeon went to bat on her behalf as well.
CHANG: And what other resources are out there?
ROSENTHAL: There are a number of websites that will help you with estimating prices. There's Pratter. There's Clear Health. There's Healthcare Bluebook. There are numerous ones. Those won't tell you the price you have to pay, but they'll give you kind of data points that you can use to argue your case.
CHANG: This seems like so much work, so much research.
ROSENTHAL: It's a really big burden to put on patients who are having surgery, especially something as emotional as gender-confirmation surgery.
ROSENTHAL: You know, you think about all the things that Wren Vetens' family did to help her. They went back and negotiated directly with the hospital, got an out-of-pocket cash price. Then they had to go back and negotiate with both the insurer and the hospital over yet another bill. And yet, in the end, it worked, right? So that's the good news.
CHANG: The very, very end.
ROSENTHAL: Yeah. Persistence is key and be a fighter.
CHANG: That's Elisabeth Rosenthal, the editor-in-chief of Kaiser Health News. Thank you for joining us.
ROSENTHAL: Thanks for having me.
CHANG: That story you heard from Bram Sable-Smith is part of NPR's reporting partnership with Side Effects Public Media, station KBIA and Kaiser Health News. And hey, if you have an interesting medical bill, we would love to see it. Go to NPR's Shots blog to share your bill with us and with Kaiser Health News.
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