Kaiser Health News

A $229,000 Medical Bill Goes to Court

Published

2 years ago

April 20, 2023

by Dan Weissmann
Thu, 20 Apr 2023 09:00:00 +0000

In 2014, Lisa French had spinal surgery. Before the operation, she was told she would have to pay $1,337 in out-of-pocket costs and that her insurance would cover the rest. However, the hospital ended up sending French a bill for $229,000. When she didn’t pay, it sued her.

The case went all the way to the Colorado Supreme Court. In this episode of “An Arm and a Leg,” host Dan Weissmann finds out how the court ruled and how the decision is reshaping the fine print on hospital bills in ways that could cost patients a lot of money.

Dan Weissmann

@danweissmann

Host 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.

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Transcript: A $229,000 Medical Bill Goes to Court

Note: “An Arm and a Leg” 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.

Dan: Hey there–

Lisa French was a clerk for a trucking company in Denver. She’d been in a car crash, and her doctor told her that to keep her spine stable, she ought to get surgery.

She asked the folks at the hospital what it was gonna cost her, out of pocket. They ran her insurance and told her: Your end is going to be one thousand, three hundred thirty-six dollars, and ninety cents.

She said, thanks.

Then, she and her husband sat down at their kitchen table and talked it over: They had a rainy-day fund. A thousand dollars they’d socked away, they kept it at home, in cash. Were they ready to spend it all for this?

They decided they were, and Lisa went to the hospital with a thousand dollars cash.

She had the surgery, it went fine. The hospital had been expecting about 55 thousand dollars from Lisa’s insurance. They actually got more like 74 thousand.

But they decided that wasn’t enough. They decided they wanted their full sticker price: 303 thousand dollars. So they billed Lisa French for the rest: 229 thousand dollars.

And when they didn’t get it, they sued her.

Lisa French had her surgery in 2014. The court case finally got resolved last year, in 2022, by the Colorado Supreme Court.

If you’ve been listening to this show for a while, you probably remember: We have gotten VERY interested in understanding, when we get a wild medical bill, what legal rights do we have? How can we use those rights to fight back? Even on a small scale, like in small claims court?

And even though Lisa French’s case is a LONG way from small claims court, it has a LOT to teach us about these questions.

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.

And I should say upfront: We won’t be hearing from Lisa French directly.

Her case made a lot of headlines– in 2018, when a jury heard it, in YEAR when an appeals court overturned the trial court, and last year when the state supreme court made its ruling.

Not in the kind of detail that we’re gonna go into, but come on: Who can resist the headline?

Male Anchor: Well, tonight we have a story of David versus Goliath. David being a woman who needed spinal surgery in 2014 Goliath, the hospital that charged her more than $200,000 to do it.

Dan: So over the years, a lot of reporters wanted a sound bite from Lisa French. Her attorney used to let her know when there was an inquiry, and she’d say yes or no.

Eventually, she told her lawyer: Don’t even tell me when they call anymore. I just want to live my life.

Fair enough.

So here’s who we’ve got.

Ted Lavender: I’m Ted Lavender. I’m an attorney in Atlanta, Georgia. I’ve been practicing law for 26 years,

Dan: And he spent several of those years representing Lisa French.

It’s probably worth answering one question up front: If Lisa French had to empty her family’s rainy-day fund to pay the hospital a thousand bucks, who’s paying the lawyer from Atlanta?

The insurance from her job. Which had played a role in starting the whole mess.

Ted Lavender: the company that she worked for had a health benefits plan that was slightly different than what you might call run of the mill health insurance.

Dan: It worked this way: They weren’t in-network with any hospitals. Instead, they’d just take whatever bill any hospital sent, make their own evaluation of what a fair price would be, and send the hospital a check.

It’s a somewhat unusual model– one survey says about 2 percent of employers use a plan like this– but Ted Lavender says it often works.

Ted Lavender: a very large percentage of the time , the hospital would accept the check and no one would hear anything more from the hospital, which in legal parlance would mean acceptance

Dan: And as a backstop, in case there was any trouble, the health plan would send a lawyer. That’s Ted.

And here’s what happened that led to all the trouble in Lisa French’s case: Whoever ran her insurance card at the hospital, they didn’t read it very carefully.

If they had, they would’ve seen a little logo under the insurance-company name that said, “provider only” — that is: This plan only has doctors and nurses and other PROVIDERS in network.

With hospitals, there’s no network, no “in-network rate.” We’ll just send a check for what we think is right.

The same health-benefits company has a different plan, one that does have a hospital network. You know how it is. Insurance companies, a million different plans, every one its own snowflake.

The hospital mistook Lisa French’s snowflake for another one, and that’s how they came up with that estimate.

Ted Lavender: based on their calculation, they expected to collect a total of

$56,000, the 1,336 from Ms. French and the remainder from her health plan.

Dan: And they presumably would’ve been happy with 56 thousand. But they got more. They got about 75 thousand dollars.

But once they got it, they wised up to the mistake they had made about Lisa French’s insurance. They had no agreement with the insurance plan to accept 56 thousand.

So, they decided: There’s no reason for us not to charge our full sticker price here.Three hundred and three thousand dollars.

So Lisa French had been expecting a bill for three hundred thirty-six dollars and ninety cents. That’s the difference between what she’d been quoted and the thousand dollars she’d paid in advance. But the bill she got wasn’t what she expected.

Ted Lavender: it turned out to be a whopper of a bill. We ended up with an itemized bill that showed every line item for every charge that totaled this

$303,000

And then at the bottom was, you know, subtracting the thousand she paid, subtracting the money the insurance paid, leaving a balance of 229,000 and change

Dan: Of course, Lisa French did not have 229 thousand dollars, or anything like it.

Ted Lavender: Eventually she got a visit from the sheriff who served her with a lawsuit and she was sued for that $229,000.

Dan: And that’s where Ted Lavender entered the scene.

The jury trial in 2018 took six days. As Ted Lavender says, it wasn’t exactly a splashy murder trial, in terms of drama.

Ted Lavender: this was a six day trial involving hospital billing. So, you know, there was no murder weapon. There was no aha, big, gotcha moment that was really exciting.

Dan: But Ted Lavender did his best. Like one time, when he got a hospital executive on the witness stand.

To stabilize Lisa French’s spine, surgeons had implanted 13 pieces of metal into her body. So Ted Lavender had the hospital executive walk the jury through the price for each of those bits of metal. Or actually, the prices..

Ted Lavender: And I first showed him the itemized bill and asked him to identify what they charged for these 13 pieces of hardware .

I had given him sort of an oversized calculator that was sitting there in front of him on the witness stand, admittedly, for some dramatic effect

And through adding these up on the itemized bill, he arrived at the number which was $197,000.

Dan: A hundred and ninety-seven thousand dollars. So that’s about two-thirds of the three hundred and three thousand dollars the hospital is trying to charge Lisa French.

And then the next thing I did was I handed in the 13 invoices that we had received from the hospital,

Dan: That is, Ted handed the guy the invoices the hospital had received — and paid — when it bought those bits of metal..

Ted Lavender: and I asked him to add up and tell this jury what did the hospital pay for these 13 pieces of hardware.

He’s adding, and he’s adding and he’s punching in numbers, and he’s turning pages and he’s adding, and he’s adding with each addition, with each plus the jury seemed to ease a little closer up to the front of their chair, and ultimately he arrived at the total, which was $31,000 and change.

Dan: So the hospital’s charging like six and a half times what they paid. And that’s two thirds of this 300 thousand dollar bill.

Ted Lavender: It just, you know, the jury seemingly did not like that.

Dan: So that was a good moment for Lisa French’s side. I mean getting the jury mad at the other side, that’s a win.

And the big calculator wasn’t Ted Lavender’s only visual: He also had a giant post-it note, where he wrote down, in magic marker, all the different prices the hospital accepted for the surgery, depending on who was paying.

Ted Lavender: and we got these numbers from the hospital, they would’ve accepted $146,000 from private insurance.

Dan: That’s less than half of what they were trying to charge Lisa French. And they accepted less than that — a LOT less — from government-funded insurance, like Medicare, Medicaid, or Tricare, which covers folks in the military.

Ted Lavender: The average of what they would’ve accepted for these. Procedures that Ms. French had were $63,199. Again, Ms. French and her insurance company combined paid almost $75,000.

Dan: You can hear that post-it rustling around. It was a good prop, he’s held onto it. So, he’d shown the jury that the hospital charged a HUGE markup, and that what they were suing Lisa French for was way, way more than they charged anybody else.

On the hospital’s side, they were like, Yeah, but this is our actual sticker price. And Lisa French signed a piece of paper that said she would pay “all charges of the hospital.”

So the hospital was like, yep, and these are our charges. That 303 thousand dollars, it comes from a list we keep. It’s called the chargemaster. That’s what Lisa French was signing up for.

And this became something the jury had to decide:

When Lisa French signed a piece of paper saying she’d pay “all charges of the hospital” — was she specifically agreeing to pay what was on the chargemaster?

And here’s one thing that might’ve made jurors a little skeptical on that score: The hospital never showed that chargemaster list to Lisa French. Not before her surgery, not after it. They said it was a trade secret.

Ted Lavender: they went all the way through trial. Never producing it though. We, we, we asked at the very beginning, once the lawsuit was filed, , basically you get to ask questions. Give me this information, give me information that supports your case or helps my case.

And we ask specifically for the charge master and they refuse to produce it on the basis that it was confidential and proprietary.

Dan: By withholding that list, the hospital may have helped Ted Lavender make his argument: How could Lisa French have known what she was signing up for, if she couldn’t see the prices?

Ted Lavender: if we can’t get it through our subpoena power, how in the world would Lisa Friendship been able to use it by, had she asked?

And admittedly she didn’t ask for it, but if she had, surely they wouldn’t have given it to her either.

Dan: In the end, the jury agreed: Lisa French had not specifically agreed to pay the hospital’s chargemaster prices.

And the only other alternative was: She agreed to pay something reasonable.

The jury decided she owed the hospital seven hundred seventy six dollars and 74 cents

Basically, that’s the three hundred and some left over from the original estimate, plus some extra — because she wound up staying in the hospital one night more than expected: She owed a fee for late check-out.

Of course the hospital did not take that lying down. They appealed the outcome– and won! Ted Lavender appealed that decision, which is how the case ended up in front of the Colorado Supreme Court.

We’ve actually got tape of those proceedings. They’re kinda juicy. Plus the outcome, and why it matters for the rest of us. That’s right after this.

This episode of An Arm and a Leg is produced in partnership with KFF Health News–formerly known as Kaiser Health News.

They’re a national newsroom producing in-depth journalism about health care in America. We’ll have more information about KFF Health News at the end of this episode.

OK, so Lisa French’s case was headed to the Colorado Supreme Court.

And here’s the big issue. Remember how the jury found that Lisa French hadn’t actually agreed to pay the hospital’s chargemaster price, the three hundred and three thousand dollars?

The hospital argued: The jury never should’ve been asked to consider that question.

The law — legal precedent — makes it open and shut: The appeals court had agreed. And it had cited other cases from courts around the country.

So when the hospital’s lawyer, Mike McConnell, got up to address the Supreme Court, he led with those citations.

Mike McConnell: All of the questions that you have raised have been addressed in more than a dozen cases around the country. carefully and thoroughly.

Justice Richard L. Gabriel: Well, let me push back on you. Good morning to you, Mr. McConnell.

Mike McConnell: Good morning.

Dan: This is Justice Richard L Gabriel, stepping right in. He notes that these dozen other decisions all rest on one original case, from 2008, where a court had said: We can’t intervene in health care pricing. Courts shouldn’t try. Health care is too complicated.

Justice Gabriel wasn’t convinced.

Justice Richard L. Gabriel: I guess the question I have is why, you know? I, you know, we may not be the smartest people in the world, but this is a contract and why should the hospital industry— different than any other industry on the planet —have different rules for contract principles?

Dan: The hospital lawyer argued that hospitals couldn’t predict everything that would happen in a patient’s care. In fact, the hospital can’t even control it: Only physicians can decide what treatment to order.

Mike McConnell: You can, uh, I guess imagine that hospitals ought to be able to predict in advance what a particular physician is going to order for a particular patient. Um, and, uh, perhaps, you know, obviously you feel that is the way it ought to be. It is not the way it is, but now

Justice Melissa Hart: Mr. Mr. McConnell, I’m sorry, to interrupt…

Dan: Here’s justice Melissa Hart breaking in

Justice Melissa Hart: …the hospital did provide an estimate in this case. They did calculate what they thought this was going to cost and tell her that. So it is, it seems false to me that they can’t do it. Of course, they can’t predict with absolute certainty. In this case, she had the extra night stay in the hospital and she paid for that. But they can predict in a case like this, and they do.

Dan: The justices didn’t seem super-persuaded by McConnell’s response to that. And that left one more big question in front of the justices.

When Lisa French signed a document promising to pay “all charges,” was she definitely agreeing to pay three hundred and three thousand dollars? Or 229 after insurance.

The appeals court found that the chargemaster rate — the 303 thousand — had been “incorporated by reference” to the document she’d signed, officially called the “hospital services agreement.”

The supreme court wasn’t convinced. Here’s Justice Richard Gabriel again.

Justice Richard L. Gabriel: There’s no reference to the charge master on the face of the hospital services agreement.

How could she have assented to something she never even knew existed?

Dan: And here’s how the hospital’s lawyer responded.

Mike McConnell: When she read the provision, all charges not otherwise paid by insurance. She understood that the hospital charges would, she was responsible for paying the hospital charges that her insurance company did it,

Justice Richard L. Gabriel: Whatever it was. They could have charged her a billion dollars and she’s your position to be she’s bound because she agreed. All charges means all charges.

Dan: Huh! There wasn’t a real comeback to that.

The Supreme Court ruled against the hospital, unanimously. Specifically, they ruled that the chargemaster– the 303 thousand dollars– had not been “incorporated by reference” to the piece of paper Lisa French had signed.

She didn’t know those chargemaster list prices even existed. How could she agree to pay them?

So that meant, the court ruled that, quote, “the hospital services agreements left the price term open.”

Which is language that may ring a bell, if you’ve been listening to this show. It’s a legal principle — a bedrock of contract law:

How the law treats an open-price contract — a contract that doesn’t specify a price term.

Here’s a refresher on that principle from Ted Lavender.

Ted Lavender: if you go to McDonald’s and order a, a quarter pounder with cheese and you know, value meal number three, they tell you the price and that is the price that you have to pay. And then they give you your meal.

You enter that contract with an actual price term

Dan: But you can also enter an open-price contract — a contract without a price term.

Ted Lavender: if you have a contract without a price term, without a specific price in it, then the law infer into that contract a reasonable price.

Dan: In other words, a contract with the price term OPEN is not a blank check. I don’t have to pay whatever number the other side makes up.

And that’s what the Colorado Supreme Court found here.

They ruled that, quote, “principles of contract law can certainly be applied to hospital-patient contracts.” They say, a court may have ruled otherwise in 2008, and other courts may have cited that opinion. We disagree.

The Colorado Supreme Court is saying, even in health care, when no price is specified– when the price term is open– you have the right to a reasonable price.

Yes!

And that’s why Lisa French’s case is so interesting to us, here on this show.

Because we’ve talked here about using this legal principle to fight back against outrageous bills.

We’ve heard from one guy, Jeffrey Fox, who actually took a hospital to small claims court to enforce his right to a reasonable price. And won.

We’ve heard from a listener who tried and failed, but said, more of us should try this.

And this Colorado decision seems like good news for anybody interested in doing something like that.

But honestly, it also raises a few concerns that I had not known about before. First:

Well, there ARE all those other cases out there, in other states, that follow the 2008 case, the one that says health care is too complicated for courts to get into.

And yeah, here’s Colorado saying, “No it isn’t.”

But courts in other states aren’t bound by Colorado’s decision. Hm. And second: there’s also something the Colorado court DIDN’T decide:

What if the paper Lisa French signed had specified, “I agree to pay the hospital’s CHARGEMASTER rates?” Could she be required to pay them then? Even if they were a billion dollars?

In their decision, The Colorado court wrote that the chargemaster rates are “increasingly arbitrary” and “inflated” and “have lost any direct connection to hospitals actual cost.”

So Ted Lavender thinks they might’ve said, No, we can’t be held to a billion dollars, just by adding the word “chargemaster.”

Ted Lavender: I think they would’ve answered that. No, but they did not come right out and actually answer that.

Dan: Because they didn’t HAVE to answer that question.

Ted Lavender: Courts routinely, in fact, it’s almost an objective of appeals courts. They answer as few a number of questions as possible to get to an answer. ,

Dan: So the Colorado court simpley ruled that in Lisa French’s case, the chargemaster rates weren’t “incorporated by reference” into papers she signed.

Those papers didn’t didn’t mention the chargemaster at all– and the hospital kept that chargemaster as a trade secret. Open, shut.

But… hospitals aren’t supposed to keep those rates secret anymore. For the last couple of years, thanks to an executive order from the Trump administration, federal rules have required them to post their chargemaster to the internet.

And so I had all that in mind when I heard from a listener in Atlanta.

Cindi Gatton: my name is Cindy Gatton and I’ve been an independent patient advocate for 11 years now.

Dan: Cindi’s job is helping people deal with medical bills, but she had actually written to me about her experience as a patient.

Before a medical appointment, she got the usual forms online, including one for “Patient Financial Agreement and Responsibilities”

Cindi Gatton: so I thought, you know what? I’m gonna print it and just see exactly what it says. And I’m reading through the thing it says, patient understands and agrees that he, she will be charge. The Piedmont Healthcare Standard charge master rates for all services not covered by a payer or that are self-pay.

I’ve never seen that before, and it shocked me that there was a reference to charge master rates in the financial disclosure.

Dan: And Cindi has been dealing with medical bills full-time for a decade. She’s seen a lot. So when she says it’s new, and that it’s shocking, that seems worth noting.

Cindi Gatton: it just feels wrong to me. It feels really wrong because it, it reminds me of, you know, you, you go to a website and they give you their terms and conditions. Nobody reads those. I don’t read them. You click yes so that you can move on with what it is you wanna do, which is to get care, to be seen by the doctor to, you know, have your procedure.

And I don’t know this, this feels, um, it feels manipulative to me

Dan: Yeah, and to me, it feels ominous. Like lawyers who work for hospitals have been paying attention to the Lisa French decision and thinking:

There’s a wedge here maybe we could exploit. Like, if we get you to sign a document that says “chargemaster” on it, we’re getting you to sign away your right to a reasonable price. After all, the court in Colorado didn’t come out and say that wouldn’t be kosher.

So, where I’m landing at the end of this story is: I’ve got a couple big homework assignments:

First, if I’m interested in seeing how we can use our legal rights to fight back against outrageous, unreasonable bills — and I am —

I need to learn more about which states recognize our rights to a reasonable price in health care, and which ones … maybe don’t. I’m on it, and if you’ve got any tips, please bring them.

That’s the first assignment, and for the second, I’d love your help: How many hospitals are using this “chargemaster” language these days in those financial responsbility documents they ask us to sign?

Do me a favor: See if you can get a copy of that document from any hospital system or doctor group where you get seen. And send me a copy of it?

Redact anything you need to. And also know: we’re not aiming to share this with anybody outside our reporting team.

Here’s what happened when I tried this.

A hospital where I get seen uses a portal called MyChart– a lot of hospitals use it. I just logged on to MyChart there, and I did a little digging around. I found a link to something called “My Documents.” And I found a form there called Universal Consent.”

It has stuff about financial responsibility.

It doesn’t mention chargemaster rates. But it’s a year old. It also says it’s expired.

And here’s an idea I got from Cindi, which I’m gonna try– and which seems worth passing around.

When Cindi found that chargemaster language in the document from her Hospital, here’s what she did. She printed it out and changed it:

Cindi Gatton: what I did is instead of the standard charge master rates, I drew a line through it and I wrote in two x Medicare rates.

Dan: In other words, instead of saying “I’ll pay the chargemaster rates,” it says, “I’ll pay two times the Medicare rate.”

We’ve heard about this strategy before, from former ProPublica reporter Marshall Allen, who wrote about it in his book, “Never Pay the First Bill.”

Here’s the rationale. Medicare pays less than most commercial insurance; hospitals say that at least sometimes they lose money on Medicare. Doubling it seems … generous enough. But it also sets a limit.

So that’s what Cindi wrote on her printout.

Cindi Gatton: I have been taking it with me when I go to be seen that if they ask me for the document that I can say, you know, here it is.

Dan: So far, she says, nobody’s asked for it.

And, I don’t think anybody will be confused, but just to make sure, I’ll say: This isn’t legal advice. I’m not a lawyer. Cindi’s not a lawyer.

She’s just a person going to the doctor, doing her best not to leave too many openings where she could get really screwed. And I’m gonna try following her example.

And I’ve got another request for you: If you try this trick of printing the thing out, exxing out the chargemaster language and writing 2 x medicare rates– LET ME KNOW WHAT HAPPENS, OK?

The place to do all this is on our website at arm and a leg show dot com, slash contact. That’s arm and a leg show dot com, slash, contact.

You are this show’s secret weapon. You’re our eyes and ears. Cindi Gatton’s a listener who got in touch.

How did I first learn about Lisa French’s case? Email from a listener. [Thank you, Terry N, for that note last year! Took us a minute, but we got to this.]

Thank you for listening. You absolutely rule. I’ll catch you soon.

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 Afi Yellow-Duke.

Daisy Rosario is our consulting managing producer. Adam Raymonda is our audio wizard. Our music is by Dave Winer and Blue Dot Sessions.

Gabrielle Healy is our managing editor for audience. She edits the First Aid Kit Newsletter.

Bea Bosco is our consulting director of operations. Sarah Ballema is our operations manager.

An Arm and a Leg is produced in partnership with KFF Health News–formerly known as Kaiser Health News.

That’s a national newsroom producing in-depth journalism about health care in America, and a core program at KFF — an independent source of health policy research, polling, and journalism.

And yes, you did hear the name Kaiser in there, and no: KFF isn’t affiliated with the health care giant Kaiser Permanente. You can learn more about KFF Health News at arm and a leg show dot com, slash KFF.

Zach Dyer is senior audio producer at KFF Health News. He is editorial liaison to this show.

Thanks to Public Narrative — That’s a Chicago-based group that helps journalists and nonprofits tell better stories– for serving as our fiscal sponsor, allowing us to accept tax-exempt donations. You can learn more about Public Narrative at www dot public narrative dot org.

And thanks to everybody who supports this show financially.

If you haven’t yet, we’d love for you to join us. The place for that is arm and a leg show dot com, slash support.

Thank you!

“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,” subscribe to the newsletter. You can also follow the show on Facebook and Twitter. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.

To hear all KFF Health News podcasts, click here.

And subscribe to “An Arm and a Leg” on Spotify, Apple Podcasts, Stitcher, Pocket Casts, or wherever you listen to podcasts.

By: Dan Weissmann
Title: A $229,000 Medical Bill Goes to Court
Sourced From: kffhealthnews.org/news/podcast/a-229000-medical-bill-goes-to-court/
Published Date: Thu, 20 Apr 2023 09:00:00 +0000

Did you miss our previous article…
https://www.biloxinewsevents.com/the-cdc-lacks-a-rural-focus-researchers-hope-a-newly-funded-office-will-help/

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HHS spokesperson Andrew Nixon said in a statement that no NIH awards for Prader-Willi syndrome research have been cut. “We remain committed to supporting critical research into rare diseases and genetic conditions,” he said.

But Strong said that already some of the contacts at the FDA she’d spent nearly 15 years educating about the disorder have left the agency. She’s heard that some research groups are considering moving their labs to Europe.

Early progress in hunger and obesity research is transforming the life of Dean Shenk. During the trial for Vykat XR, his anxiety about food eased so much that his parents began leaving cupboards unlocked.

Jennifer Miller, a pediatric endocrinologist at the University of Florida who co-led the Vykat XR trials, treats around 600 Prader-Willi patients, including Dean. She said the impact she’s seen is life-changing. Since the drug trial started in 2018, some of her adult patients have begun living independently, getting into college, and starting jobs — milestones that once felt impossible. “It opens up their world in so many ways.”

Over 26 years in practice, she’s also seen just how severely the disease hurts patients. One patient ate a four-pound bag of dehydrated potato flakes; another ingested all 10 frozen pizzas from a Costco pack; some ate pet food. Others have climbed out of windows, dived into dumpsters, even died after being hit by a car while running away from home in search of food.

Low muscle tone, developmental delays, cognitive disabilities, and behavioral challenges are also common features of the disorder.

Dean attends a special education program, his mother said. He also has narcolepsy and cataplexy — a sudden loss of muscle control triggered by strong emotions. His once-regular meltdowns and skin-picking, which led to deep, infected lesions, were tied to anxiety over his obsessive, almost painful urge to eat.

In the trial, though, his hyperphagia was under control, according to Miller and Dean’s mother. His lean muscle mass quadrupled, his body fat went down, and his bone mineral density increased. Even the skin-picking stopped, Foley Shenk said.

Vykat XR is not a cure for the disease. Instead, it calms overactive neurons in the hypothalamus that release neuropeptide Y — one of the body’s strongest hunger signals. “In most people, if you stop secreting NPY, hunger goes away,” said Anish Bhatnagar, CEO of Soleno Therapeutics, which makes the medication, the company’s first drug. “In Prader-Willi, that off switch doesn’t exist. It’s literally your brain telling you, ‘You’re starving,’ as you eat.”

GLP-1 drugs, by contrast, mimic a gut hormone that helps people feel full by slowing digestion and signaling satiety to the brain.

Vykat XR’s possible side effects include high blood sugar, increased hair growth, and fluid retention or swelling, but those are trade-offs that many patients are willing to make to get some relief from the most devastating symptom of the condition.

Still, the drug’s average price of $466,200 a year is staggering even for rare-disease treatments. Soleno said in a statement it expects broad coverage from both private and public insurers and that the copayments will be “minimal.” Until more insurers start reimbursing the cost, the company is providing the drug free of charge to trial participants.

Soleno’s stock soared 40% after the FDA nod and has held fairly steady since, with the company valued at nearly $4 billion as of early June.

While Vykat XR may be limited in whom it can help with appetite control, obesity researchers are hoping the research behind it may help them decode the complexity of hunger and identify other treatment options.

“Understanding how more targeted therapies work in rare genetic obesity helps us better understand the brain pathways behind appetite,” said Jesse Richards, an internal medicine physician and the director of obesity medicine at the University of Oklahoma-Tulsa’s School of Community Medicine.

That future may already be taking shape. For Prader-Willi, two other notable phase 3 clinical trials are underway, led by Acadia Pharmaceuticals and Aardvark Therapeutics, each targeting different pathways. Meanwhile, hundreds of trials for general obesity are currently recruiting despite the uncertainties in U.S. medical research funding.

That brings more hope to patients like Dean. Nearly six years after starting treatment, the now-16-year-old is a calmer, happier kid, his mom said. He’s more social, has friends, and can focus better in school. With the impulse to overeat no longer dominating his every thought, he has space for other interests — Star Wars, American Ninja Warrior, and a healthy appreciation for avocados among them.

“Before the drug, it just felt like a dead end. My child was miserable,” Foley Shenk said. “Now, we have our son back.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Note: The following A.I. based commentary is not part of the original article, reproduced above, but is offered in the hopes that it will promote greater media literacy and critical thinking, by making any potential bias more visible to the reader –Staff Editor.

Political Bias Rating: Center-Left

The content focuses on a health and medical research topic, highlighting advances in treating a rare genetic obesity disorder and the broader challenges in obesity research. It criticizes policies under a Trump administration for cutting federal health research funding and disrupting medical discovery, a critique more commonly aligned with center-left perspectives that advocate for strong public investment in science and healthcare. While the piece is largely factual and informative, its framing around funding cuts and administration policies suggests a mild bias to the center-left, emphasizing the importance of government support in medical innovation.

Kaiser Health News

As Federal Health Grants Shrink, Memory Cafes Help Dementia Patients and Their Caregivers

Published

1 week ago

June 10, 2025

Staff Editor

kffhealthnews.org – Lydia McFarlane, WVIA – 2025-06-10 04:00:00

Lydia McFarlane, WVIA

June 10, 2025

Rob Kennedy mingled with about a dozen other people in a community space in Clarks Summit, Pennsylvania.

The room, decorated with an under-the-sea theme, had a balloon arch decked out with streamers meant to look like jellyfish and a cloud of clear balloons mimicking ocean bubbles.

Kennedy comes to this memory cafe twice a month since being diagnosed with early onset Alzheimer’s disease in his late 50s.

Everyone here has a degree of memory loss or is a caregiver for someone with memory loss.

Attendees colored on worksheets with an underwater theme. They drank coffee and returned to the breakfast bar for seconds on pastries.

A quick round of trivia got everyone’s minds working.

“We start out with just little trivia — many of us cannot answer any of the questions,” Kennedy said with a laugh.

“We all have a good time going around,” he added. “You know, we all try to make it fun.”

The northeastern Pennsylvania memory cafe Kennedy attends is one of more than 600 around the country, according to Dementia Friendly America. The gatherings for people with cognitive impairment and their caregivers are relatively cheap and easy to run — often the only expense is a small rental fee for the space.

As state and local health departments nationwide try to make sense of what the potential loss of $11 billion of federal health funding will mean for the services they can offer their communities, memory cafe organizers believe their work may become even more important.

Losing Memory, and Other Things, Too

Kennedy’s diagnosis led him to retire, ending a decades-long career as a software engineer at the University of Scranton.

He recommends memory cafes to other people with dementia and their families.

“If they’re not coming to a place like this, they’re doing themselves a disservice. You got to get out there and see people that are laughing.”

The memory cafes he attends happen twice a month. They have given him purpose, Kennedy said, and help him cope with negative emotions around his diagnosis.

“I came in and I was miserable,” Kennedy said. “I come in now and it’s like, it’s family, it’s a big, extended family. I get to meet them. I get to meet their partners. I get to meet their children. So, it’s really nice.”

More than 6 million people in the U.S. have been diagnosed with some form of dementia. The diagnosis can be burdensome on relationships, particularly with family members who are the primary caregivers.

A new report from the Alzheimer’s Association found that 70% of caregivers reported that coordinating care is stressful. Socializing can also become more difficult after diagnosis.

“One thing I have heard again and again from people who come to our memory cafe is ‘all of our friends disappeared,’” said Beth Soltzberg, a social worker at Jewish Family and Children’s Service of Greater Boston, where she directs the Alzheimer’s and related dementia family support program.

The inclusion of caregivers is what distinguishes memory cafes from other programs that serve people with cognitive impairment, like adult day care. Memory cafes don’t offer formal therapies. At a memory cafe, having fun together and being social supports the well-being of participants. And that support is for the patient and their caregiver — because both can experience social isolation and distress after a diagnosis.

A 2021 study published in Frontiers in Public Health indicated that even online memory cafes during the pandemic provided social support for both patients and their family members.

“A memory cafe is a cafe which recognizes that some of the clients here may have cognitive impairment, some may not,” said Jason Karlawish, a geriatrics professor at the University of Pennsylvania’s Perelman School of Medicine and the co-director of the Penn Memory Center.

Karlawish regularly recommends memory cafes to his patients, in part because they benefit caregivers as well.

“The caregiver-patient dyad, I find often, has achieved some degree of connection and enjoyment in doing things together,” Karlawish said. “For many, that’s a very gratifying experience, because dementia does reshape relationships.”

“That socialization really does help ease the stress that they feel from being a caregiver,” said Kyra O’Brien, a neurologist who also teaches at Penn’s Perelman School of Medicine. “We know that patients have better quality of life when their caregivers are under less stress.”

An Affordable Way To Address a Growing Problem

As the population grows older, the number of available family caregivers is decreasing, according to the AARP Public Policy Institute. The report found that the number of potential caregivers for an individual 80 or older will decrease significantly by 2050.

In 2024, the Alzheimer’s Association issued a report projecting a jump in dementia cases in the U.S. from an estimated 6.9 million people age 65 or older currently living with Alzheimer’s disease to 13.8 million people by 2060. It attributed this increase primarily to the aging of the baby boom generation, or those born between 1946 and 1964.

As cases of memory loss are projected to rise, the Trump administration is attempting to cut billions in health spending. Since memory cafes don’t rely on federal dollars, they may become an even more important part of the continuum of care for people with memory loss and their loved ones.

“We’re fighting off some pretty significant Medicaid cuts at the congressional level,” said Georgia Goodman, director of Medicaid policy for LeadingAge, a national nonprofit network of services for people as they age. “Medicaid is a program that doesn’t necessarily pay for memory cafes, but thinking about ensuring that the long-term care continuum and the funding mechanisms that support it are robust and remain available for folks is going to be key.”

The nonprofit MemoryLane Care Services operates two memory cafes in Toledo, Ohio. They’re virtually free to operate, because they take place in venues that don’t require payment, according to Salli Bollin, the executive director.

“That really helps from a cost standpoint, from a funding standpoint,” Bollin said.

One of the memory cafes takes place once a month at a local coffee shop. The other meets at the Toledo Museum of Art. MemoryLane Care Services provides the museum employees with training in dementia sensitivity so they can lead tours for the memory cafe participants.

The memory cafe that Rob Kennedy attends in Pennsylvania costs about $150 a month to run, according to the host organization, The Gathering Place.

“This is a labor of love,” said board member Paula Baillie, referring to the volunteers who run the memory cafe. “The fact that they’re giving up time — they recognize that this is important.”

The monthly budget goes toward crafts, books, coffee, snacks, and some utilities for the two-hour meetings. Local foundations provide grants that help cover those costs.

Even though memory cafes are inexpensive and not dependent on federal funding, they could face indirect obstacles because of the Trump administration’s recent funding cuts.

Organizers worry the loss of federal funds could negatively affect the host institutions, such as libraries and other community spaces.

Memory Cafe Hot Spot: Wisconsin

At least 39 states have hosted memory cafes recently, according to Dementia Friendly America. Wisconsin has the most — more than 100.

The state has a strong infrastructure focused on memory care, which should keep its memory cafes running regardless of what is happening at the federal level, according to Susan McFadden, a professor emerita of psychology at the University of Wisconsin-Oshkosh. She co-founded the Fox Valley Memory Project, which oversees 14 memory cafes.

“They’ve operated on the grassroots, they’ve operated on pretty small budgets and a lot of goodwill,” she said.

Since 2013, Wisconsin has also had a unique network for dementia care, with state-funded dementia care specialists for each county and federally recognized tribe in Wisconsin. The specialists help connect individuals with cognitive impairment to community resources, bolstering memory cafe attendance.

McFadden first heard about memory cafes in 2011, before they were popular in the United States. She was conducting research on memory and teaching courses on aging.

McFadden reached out to memory cafes in the United Kingdom, where the model was already popular and well connected. Memory cafe organizers invited her to visit and observe them in person, so she planned a trip overseas with her husband.

Their tour skipped over the typical tourist hot spots, taking them to more humble settings.

“We saw church basements and senior center dining rooms and assisted living dining rooms,” she said. “That, to me, is really the core of memory cafes. It’s hospitality. It’s reaching out to people you don’t know and welcoming them, and that’s what they did for us.”

After her trip, McFadden started applying for grants and scouting locations that could host memory cafes in Wisconsin.

She opened her first one in Appleton, Wisconsin, in 2012, just over a year after her transformative trip to the U.K.

These days, she points interested people to a national directory of memory cafes hosted by Dementia Friendly America. The organization’s Memory Cafe Alliance also offers training modules — developed by McFadden and her colleague Anne Basting — to help people establish cafes in their own communities, wherever they are.

“They’re not so hard to set up; they’re not expensive,” McFadden said. “It doesn’t require an act of the legislature to do a memory cafe. It takes community engagement.”

This article is part of a partnership with NPR and WVIA.

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Political Bias Rating: Center-Left

This content focuses on community health and social support programs for individuals with dementia, highlighting concerns about federal funding cuts under the Trump administration, which is a Republican-led government. The article advocates for social programs and notes the potential negative impact of reduced funding on vulnerable populations, aligning it moderately with center-left perspectives that prioritize government-supported social services while maintaining a generally neutral and informative tone.

Kaiser Health News

In a Dusty Corner of California, Trump’s Threatened Cuts to Asthma Care Raise Fears

Published

2 weeks ago

June 6, 2025

Staff Editor

kffhealthnews.org – Miranda Green – 2025-06-06 04:00:00

Miranda Green

June 6, 2025

Esther Bejarano’s son was 11 months old when asthma landed him in the hospital. She didn’t know what had triggered his symptoms — neither she nor her husband had asthma — but she suspected it was the pesticides sprayed on the agricultural fields near her family’s home.

Pesticides are a known contributor to asthma and are commonly used where Bejarano lives in California’s Imperial Valley, a landlocked region that straddles two counties on the U.S.-Mexico border and is one of the main producers of the nation’s winter crops. It also has some of the worst air pollution in the nation and one of the highest rates of childhood asthma emergency room visits in the state, according to data collected by the California Department of Public Health.

Bejarano has since learned to manage her now-19-year-old son’s asthma and works at Comite Civico del Valle, a local rights organization focused on environmental justice in the Imperial Valley. The organization trains health care workers to educate patients on proper asthma management, enabling them to avoid hospitalization and eliminate triggers at home. The course is so popular that there’s a waiting list, Bejarano said.

But the group’s Asthma Management Academy program and similar initiatives nationwide face extinction with the Trump administration’s mass layoffs, grant cancellations, and proposed budget cuts at the Department of Health and Human Services and the Environmental Protection Agency. Asthma experts fear the cumulative impact of the reductions could result in more ER visits and deaths, particularly for children and people in low-income communities — populations disproportionately vulnerable to the disease.

“Asthma is a preventive condition,” Bejarano said. “No one should die of asthma.”

Asthma can block airways, making it hard to breathe, and in severe cases can cause death if not treated quickly. Nearly 28 million people in the U.S. have asthma, and about 10 people still die every day from the disease, according to the Asthma and Allergy Foundation of America.

In May, the White House released a budget proposal that would permanently shutter the Centers for Disease Control and Prevention’s National Asthma Control Program, which was already gutted by federal health department layoffs in April. It’s unclear whether Congress will approve the closure.

Last year, the program allotted $33.5 million to state-administered initiatives in 27 states, Puerto Rico, and Washington, D.C., to help communities with asthma education. The funding is distributed in four-year grant cycles, during which the programs receive up to $725,000 each annually.

Comite Civico del Valle’s academy in Southern California, a clinician workshop in Houston, and asthma medical management training in Allentown, Pennsylvania — ranked the most challenging U.S. city to live in with asthma — are among the programs largely surviving on these grants. The first year of the current grant cycle ends Aug. 31, and it’s unknown whether funding will continue beyond then.

Data suggests that the CDC’s National Asthma Control Program has had a significant impact. The agency’s own research has shown that the program saves $71 in health care costs for every $1 invested. And the asthma death rate decreased 44% between the 1999 launch of the program and 2021, according to the American Lung Association.

“Losing support from the CDC will have devastating impacts on asthma programs in states and communities across the country, programs that we know are improving the lives of millions of people with asthma,” said Anne Kelsey Lamb, director of the Public Health Institute’s Regional Asthma Management and Prevention program. “And the thing is that we know a lot about what works to help people keep their asthma well controlled, and that’s why it’s so devastating.”

The Trump administration cited cost savings and efficiency in its April announcement of the cuts to HHS. Requests for comment from the White House and CDC about cuts to federal asthma and related programs were not answered.

The Information Wars

Fresno, in the heart of California’s Central Valley, is one of the country’s top 20 “asthma capitals,” with high rates of asthma and related emergencies and deaths. It’s home to programs that receive funding through the National Asthma Control Program. Health care professionals there also rely on another aspect of the program that is under threat if it’s shuttered: countrywide data.

The federal asthma program collects information on asthma rates and offers a tool to study prevalence and rates of death from the disease, see what populations are most affected, and assess state and local trends. Asthma educators and health care providers worry that the loss of these numbers could be the biggest impact of the cuts, because it would mean a dearth of information crucial to forming educated recommendations and treatment plans.

“How do we justify the services we provide if the data isn’t there?” said Graciela Anaya, director of community health at the Central California Asthma Collaborative in Fresno.

Mitchell Grayson, chair of the Asthma and Allergy Foundation’s Medical Scientific Council, is similarly concerned.

“My fear is we’re going to live in a world that is frozen in Jan. 19, 2025, as far as data, because that was the last time you know that this information was safely collected,” he said.

Grayson, an allergist who practices in Columbus, Ohio, said he also worries government websites will delete important recommendations that asthma sufferers avoid heavy air pollution, get annual flu shots, and get covid-19 vaccines.

Disproportionate Risk

Asthma disproportionately affects communities of color because of “historic structural issues,” said Lynda Mitchell, CEO of the Asthma and Allergy Network, citing a higher likelihood of living in public housing or near highways and other pollution sources.

She and other experts in the field said cuts to diversity initiatives across federal agencies, combined with the rollback of environmental protections, will have an outsize impact on these at-risk populations.

In December, the Biden administration awarded nearly $1.6 billion through the EPA’s Community Change Grants program to help disadvantaged communities address pollution and climate threats. The Trump administration moved to cut this funding in March. The grant freezes, which have been temporarily blocked by the courts, are part of a broader effort by the Trump EPA to eliminate aid to environmental justice programs across the agency.

In 2023 and 2024, the National Institutes of Health’s Climate Change and Health Initiative received $40 million for research, including on the link between asthma and climate change. The Trump administration has moved to cut that money. And a March memo essentially halted all NIH grants focused on diversity, equity, and inclusion, or DEI — funds many of the asthma programs serving low-income communities rely on to operate.

On top of those cuts, environmental advocates like Isabel González Whitaker of Memphis, Tennessee, worry that the proposed reversals of environmental regulations will further harm the health of communities like hers that are already reeling from the effects of climate change. Shelby County, home to Memphis, recently received an “F” on the American Lung Association’s annual report card for having so many high ozone days. González Whitaker is director of EcoMadres, a program within the national organization Moms for Clean Air that advocates for better environmental conditions for Latino communities.

“Urgent asthma needs in communities are getting defunded at a time when I just see things getting worse in terms of deregulation,” said González Whitaker, who took her 12-year-old son to the hospital because of breathing issues for the first time this year. “We’re being assaulted by this data and science, which is clearly stating that we need to be doing better around preserving the regulations.”

Back in California’s Imperial Valley — where the majority-Hispanic, working-class population surrounds California’s largest lake, the Salton Sea — is an area called Bombay Beach. Bejarano calls it the “forgotten community.” Homes there lack clean running water, because of naturally occurring arsenic in the groundwater, and residents frequently experience a smell like rotten eggs blowing off the drying lakebed, exposing decades of pesticide-tinged dirt.

In 2022, a 12-year-old girl died in Bombay Beach after an asthma attack. Bejarano said she later learned that the girl’s school had recommended that she take part in Comite Civico del Valle’s at-home asthma education program. She said the girl was on the waiting list when she died.

“It hit home. Her death showed the personal need we have here in Imperial County,” Bejarano said. “Deaths are preventable. Asthma is reversible. If you have asthma, you should be able to live a healthy life.”

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Political Bias Rating: Center-Left

This content emphasizes environmental justice, public health protections, and critiques of budget cuts under the Trump administration, framing them as harmful to vulnerable and low-income communities. It highlights the negative impact of deregulation and funding reductions on asthma programs, particularly those benefiting marginalized groups. While it maintains a factual and measured tone, its focus on environmental regulation, public health funding, and social equity aligns with center-left perspectives that prioritize government intervention to address health disparities and environmental issues.