Kaiser Health News

An Arm and a Leg: Meet the Middleman’s Middleman

Published

12 months ago

June 25, 2024

Dan Weissmann
Tue, 25 Jun 2024 09:00:00 +0000

Some people who expected their health insurance to cover some out-of-network care have been getting stuck with enormous bills.

One Kansas City, Kansas, couple paid thousands of dollars out-of-pocket and up-front for care. They expected to get a partial reimbursement from their insurer. So, they were shocked when instead they got a bill saying they owed even more than what they’d already paid.

It turns out, a little-known data firm called MultiPlan was working with their insurance company to suggest cuts to their coverage. MulitPlan says it’s helping control ballooning health care costs by keeping hospitals and providers from overbilling. But it’s often patients left paying the difference.In this episode of “An Arm and a Leg,” host Dan Weissmann breaks down this confusing world of out-of-network care with New York Times reporter Chris Hamby, who recently published an investigation into MultiPlan.

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.

Credits

Emily Pisacreta
Producer

Claire Davenport
Producer

Adam Raymonda
Audio wizard

Ellen Weiss
Editor

Click to open the Transcript

Transcript: Meet the Middleman’s Middleman

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! Paul and Kristin live in Kansas City with their two kids. Kristin and their daughter, the older kid– they have some complex medical issues, need to see some specialized folks. And some of those folks don’t take Kristin and Paul’s insurance. They’re “out of network,” so Kristin and Paul pay out of pocket– a lot. Maybe $20,000 a year. BUT their health insurance plan does reimburse some out-of-network care.

o, in January 2023, Kristin called a help line connected with the insurance plan to find out how that was gonna work.

Kristin H: They basically said, sure, easy peasy, you pay and then you get online and you click this form, you show what you paid, and then we send you a check and reimburse you.

Dan: Kristin was on it. She built a whole spreadsheet to track every bill she paid, every reimbursement form she’d submitted. And she waited for the checks. The insurance company gave itself months just to process the claims. And when they finally sent statements, the statements seemed … weird. They were like:

Kristin H: Here’s what you paid, and here’s your discounts, and here’s what you may owe.

Dan: And Kristin was like … what?

Kristin H: Because I was thinking, well, I don’t owe anything. We paid out of pocket, but then I was thinking, well, this must be the portion that they’re paying us back. But then the math didn’t add up.

Dan: Yeah. Not at all. Kristin was expecting to get 50 percent back, like her plan said she would. But this amount wasn’t anything like 50 percent. And what’s this “discount” business?

It took months– and a lot of digging from Paul, and ultimately a talk with a NewYork Times reporter– before Kristin and Paul understood what was going on, and why it was costing them thousands of dollars.

What they didn’t know until that New York Times story came out was: Someone was making a multi-billion dollar business out of experiences like theirs. As that story made clear, LOTS of people who expected their insurance to cover them for expensive out-of-network care ended up on the hook for a lot more than they’d expected.

That story introduced readers to a character who’s become kind of a TYPE on this show. Not a type of person, but a type of business: A middleman that works behind the scenes with insurance companies. So we’ve seen that dynamic with pharmacy benefit managers– the folks who decide what drugs you can get and for how much– and more recently, we looked at a company that uses an algorithm to justify kicking folks out of nursing homes. The middleman in this New York Times story was a company called MultiPlan.

Reporter Chris Hamby found MultiPlan and insurance companies they worked with were leaving patients on the hook for huge amounts that they absolutely had not expected to pay. MultiPlan was also, along with those insurance companies, pocketing big fees. That story got some folks’ attention. A U.S. Senator has called for action from antitrust regulators. Those regulators might get interested. And we may wanna egg them on– so we’re gonna need to understand the whole scheme. Whothis middleman is– MultiPlan– and how they got themselves in the middle of 60 million people’s health insurance, by their own estimate … and how they make a lot of money.

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 a show that’s entertaining, empowering, and useful.

And this time, I’ve got help.

Chris Hamby: My name is Chris Hamby. I’m a reporter on the investigations desk at the New York Times.

Dan: Yeah, and of course, Chris is the one who spent months figuring out the story of this middleman company, MultiPlan.

Chris Hamby: I was poking around a number of areas related to health insurance, and this name just kept coming up.

Dan: Like in lawsuits.

Chris Hamby: And it wasn’t always terribly clear what they did exactly or how they were compensated.

Dan: Or how doctors and patients– regular people– were affected.

Chris Hamby: So that’s why I decided to try and figure this out, and it’s sort of an opaque space as so many areas of health care are these days.

Dan: Yeah. In fact, in order to understand this story at all– to understand who’s doing WELL in this scenario– we’ve gotta peel back a layer. It’s something we’ve talked about here before, but not for a while, and you know, not even my mom remembers everything I’ve ever said here.

This is about the mechanics of how most health insurance people get from their job actually works: about who actually pays medical bills when your insurance settles a claim. It’s not the insurance company. It’s actually the employer paying those bills.

Of course, employers don’t know how to actually RUN an insurance plan. [Unless the employer is Aetna, I guess]. So they hire insurance companies to administer them. You get a card that says Cigna or Blue Cross, but your employer’s funds actually pay the medical bills, so these are called “self-funded” plans. But this is all stuff most of us are just not aware of.

Here’s Chris Hamby:

Chris Hamby: I hadn’t, until about a year ago, even heard of a self-funded plan. And I like to think that I’m reasonably well informed on this stuff.

Dan: Yeah, that is putting it mildly. Chris made his name and won a Pulitzer Prize covering workplace health issues. So, just park that for a minute: self-funded plan, where the employer is the “self,” actually paying the bills, and paying the insurance company a fee. The insurance company is a middleman.

OK, now, next layer: The middleman’s middleman. In this case, the company MultiPlan that Chris wrote about. What’s their job? So in this story, the job they’re doing– their middleman job– is to address what is admittedly kind of a tough question: If you go see somebody– a doctor, a therapist– who doesn’t take your insurance, what happens?

Chris Hamby: How do you determine what a fair amount to pay the provider is? And by extension, how much is the patient potentially on the hook for the unpaid balance? And that has long been a contentious issue.

Dan: Because, if they don’t take your insurance, a provider could charge … absolutely anything. So is your insurer– and again, that’s often actually your employer– supposed to pay absolutely anything? How much are they supposed to pay? Figuring that out, it’s a job.

About 15 years ago, another middleman company doing that job got sued by the NewYork state attorney general. The state said this earlier middleman’s way of figuring out what to pay was screwing over both providers and patients. And the state’s lawsuit produced a solution.

Chris Hamby: The insurance companies agreed to fund the creation of a nonprofit entity that was going be sort of an independent, neutral arbiter of fair prices. It was going to collect data from all the insurers and just make it publicly available. Make sure it was transparent to everyone.

Dan: This nonprofit is called FAIR Health, and its data is actually public. It still exists. Like, you can use it yourself — you can look up the going rate for a knee replacement, a blood test, whatever.

Chris Hamby: You can plug in your zip code, plug in your medical procedure and see an estimate of what, you know, typical out-of-network charges and in-network charges would be for these.

Dan: It’s cool! Check it out yourself; it’s useful. And all the major insurance companies agreed to use it– to use FAIR Health’s benchmarks– to decide what to pay for out-of-network stuff. But, those agreements only committed insurance companies to using FAIR Health for … five years. They expired in 2014.

Enter middleman companies like MultiPlan, saying to insurance companies: Hey, you COULD use FAIR Health– or you could route out-of-network bills to us: Hire us to get you an even better deal– better prices.

Chris Hamby: And it’s important to note also that this is a time when private equity is investing in healthcare, and there are some legitimate concerns about driving up those list prices to ridiculously high levels in a lot of cases. So, there were real issues that insurers were saying that they were responding to at the time.

Dan: OK, so that’s the pitch. MultiPlan is saying to insurance companies: We’ll help you hold the line. We can save you more money than if you used FAIR Health. Well, kind of. Because here’s where we come back to the whole thing about self-funded insurance. MultiPlan isn’t saying, “We can save YOU, insurance company, more money than if you used FAIR Health.” They’re saying, “We can help you save your CLIENTS– employers who do self-funded health insurance– more money. And when you save them money, you’re gonna make money. Because you can charge them a percentage of what you’re saving them. And we’ll get a percentage too.” A percentage of the savings. On every single bill. That’s a very different deal than just using FAIR Health’s data.

Chris Hamby: FAIR Health is not taking a percentage of the savings that they obtain. They’re just selling you their data. And the insurers typically are not charging employers a fee for using FAIR Health’s data. But if they use MultiPlan’s data, both MultiPlan and the insurer typically charge a fee.

Dan: A percentage. In examples from Chris’s story, the insurance company gets 35 percent of those savings.

Chris Hamby: And this has become a significant amount of money for a lot of insurance companies. Overall, UnitedHealthcare, is up to, you know, around a billion dollars per year in recent years.

Dan: UnitedHealthcare collects like a billion dollars in fees for these services, basically, for using MultiPlan specifically?

Chris Hamby: And they couch that by saying some other out-of-network savings programs, but yes.

Dan: Whooh!

Chris Hamby: One thing that the insurers say is that the employers are aware of this; they’ve signed up for it.

Dan: That employers are hiring, say, Cigna, with MultiPlan to find savings. And employers are agreeing to the fees.

Chris Hamby: Where it gets a little bit dicier from the employer’s perspective is when you see claims where, for instance, you end up paying the insurance company more in fees than you paid the doctor for treating your employee.

Dan: yeah, one example from Chris’s story: An out-of-network provider wanted more than $150,000 on one bill. And after the insurance company and MultiPlan did their bit, the employer, a trucking company, ended up paying $58,000. Eight thousand for the provider, and $50,000 to the insurance company and MultiPlan. So, on the one hand, the employer maybe saved $90,000. But paying $50,000 for “cost containment?” Maybe doesn’t sound like such a bargain.

Some employers and a union that runs a health plan have filed lawsuits looking for some of that money back. And there’s also a big irony here because MultiPlan’s pitch is, you need us because sticker prices are super-wildly high. But MultiPlan isn’t doing anything to contain the sticker prices as a systemic problem. In fact, the higher providers crank up their sticker prices, the more money MultiPlan and the insurance companies they work with can make. But then there’s a big question too, which is, what happens to the rest of that bill for the sticker price? Who pays that? That’s next …

This episode of An Arm and a Leg is a co-production of Public Road Productions and KFF Health News. The folks at KFF Health News are amazing journalists. Their work wins all kinds of awards, every year. We’re honored to work with them.

So, a provider sends a bill. MultiPlan and the insurance company say, “Woah, way too much.” And then what happens? Well, it depends. Sometimes, MultiPlan negotiates with the provider. They’ve got people who do this. And those negotiators drive hard bargains. According to Chris’s story, negotiators sometimes tell providers: Here’s my offer, you’ve got a few hours to take it or leave it, and my next offer might be lower.

Chris talked with a pediatric therapist who said an offer based on MultiPlan’s calculation was less than half of what Medicaid pays. Less than half. And Medicaid rates– they’re notoriously pretty low. Chris talked with some of MultiPlan’s negotiators too.

Chris Hamby: It was interesting because some of the negotiators felt that they were doing their part to hold down costs and really sort of stick it to providers and hospitals that were price gouging.

Dan: But …one told Chris she knew the offers she made– they weren’t fair. “It’s just a game,” another one said. “It’s sad.” And maybe the difference is that some of these negotiators were thinking of a big hospital charging $150,000 for something. And maybe some of them were thinking of someone like that therapist– the one who got offered less than half of Medicaid’s rate.

And I’m not gonna get into the question of who should be doing this kind of negotiating, or what’s fair. I mean, not today, anyway. Because: in a lot of cases with MultiPlan, there’s no negotiation at all. Negotiation only happens when the employer has told the insurance company, look, protect my people. Figure out SOMETHING with the provider so they don’t go after my workers for the rest.

But that doesn’t always happen. A lot of the time, what happens is: The provider sends a bill. The insurance company kicks in whatever it decides to … and that’s it.

So Chris’s story opens with a woman who had surgery. With MultiPlan’s help, her insurance company decided to pay about $5,400. And she got stuck with a bill for more than $100,000.

And then there’s Kristin and Paul in Kansas City. They paid their bills upfront and then looked to get reimbursed– kept a spreadsheet. But when their claims finally got processed, the numbers didn’t add up. Here’s what they saw: Like pretty much every insurance plan, Kristin and Paul’s had a “deductible”– an amount they had to pay out of pocket before insurance would reimburse anything.

Kristin H: Then I started watching the deductible and you know, when I calculated my spreadsheet of how much we had paid out of pocket, and when we saw what was on like our out-of-network spend, those two weren’t matching.

Dan: She really couldn’t figure this out.

Kristin H: I just kind of handed over all of my spreadsheets to Paul, and so that’s when he started digging into the “your discount.”

Dan: “Your discount…” That was this mysterious number on all the statements from the insurance company. In addition to the provider’s rate, and what insurance might pay, the statements listed, quote, “your discount.”

Paul H: And I’m like, what is this? I don’t understand why it’s talking about a discount. We are paying cash out of pocket to the provider at their billed rate, and our insurance is saying that there’s some sort of discount.

Dan: After a bunch of phone calls, he figured it out: The discount was … the difference between the amount on the bill and what the insurance company– with MultiPlan’s help– had decided was a “fair price.”

Paul H: For example, an occupational therapy bill that might be $125, this third party adjuster might come back and say, essentially what the market rate for that should be is $76. And so, your discount, quote, unquote, is $49.

Dan: Except of course, it wasn’t a discount for Kristin and Paul. They had already paid that $49, when they paid the provider upfront. Once Kristin and Paul learned what the “discount” actually meant, they started to understand who actually got the benefit– the insurer. Because …

Kristin H: That discounted rate is actually what will be applied to your deductible. So you’re not going to hit your deductible nearly as quickly as you think. Right? Because we’ve essentially ignored half of your payment.

Dan: This hits Kristin and Paul in two ways.

First, it means they’re actually spending a lot more before their insurance kicks in. It also means that when their insurance does start reimbursing them a percentage of what they’ve spent, the insurance is only paying a percentage of that lower amount. Overall, it means the reimbursements Kristin and Paul get are gonna be thousands of dollars less than they’d expected.

I mean, it took a LOT of work for Kristin and Paul to figure this out. At one point, Paul posted to Reddit asking for help– that’s where Chris Hamby found him. In Paul’s post, he noted how nobody ever even mentioned this third-party adjuster– not until he had already talked to his insurance company for what he said was “about 18 times.” Frequently on hold for 45 minutes or more.

Kristin says once they finally figured out what was going on, they could figure out how to budget for it. There were sacrifices. She stopped seeing one of her providers as often. But finally figuring out what was going on also allowed them to live with it.

Kristin H: The infuriating part was telling, like doing exactly what we were told to do, following the process, and then feeling like you are crazy. Like why, why doesn’t this make sense? You know? And so I think I’m fortunate that Paul just wouldn’t let it die and was gonna research until he figured it out.

Dan: You did all of the work, you tracked it down, you identified the problem, and you, as you say, kind of resigned yourself to it. You’re like, okay, this Goliath is not– we don’t have the slingshot for this. Goliath is stomping all over our town, and we have to live in that reality. Having the knowledge, having done that work, gives you, it sounds like, an ability to have some peace. Like having tracked it down means that this sucks, but it’s not the same as living in a situation where like, now what? Like anything could happen.

Kristin H: Yeah, you feel crazy or hopeless. You know? Like I’ve done everything and this doesn’t … So there’s just the sense of like, am I missing something? You know, is there anything left for me to do? I recognize that everyone is not like this, but for me, knowledge is a gift.

Dan: Chris Hamby says there’s rarely a way to get this kind of knowledge in advance. He says you’re unlikely to find these kinds of details in your insurance plan document.

Chris Hamby: It typically will not say when you go out of network, we’re going to send your claim to a third party that you’ve never heard of to price it. It will just give some sort of vague language about competitive rates in your geographic area. And if you call up in advance of seeking the care to try and get an estimate, most of the time you will not get much more specifics than that. They tell you you have to just go and they’ll process the claim and you’ll see when the explanation of benefits comes through.

Dan: Yeah, and look, I hate to get you even angrier, but Chris says the rules can change on you, without notice.

Chris Hamby: A lot of people that I talk with also have seen no change in their insurance plan, but they’ve seen their reimbursement rates decline over time.

Dan: Turns out, behind the scenes, their insurance made a switch from a service like FAIR Health, which looks at what’s getting paid in general, to a service like MultiPlan, which looks for the steepest possible price cuts.

Chris Hamby: And the difference between those two amounts can be vast. So you have people who in some cases stop seeing their doctors because their costs doubled almost overnight.

Dan: Oh god. And still. Better to know. Better that as many of us know as possible. That’s why Chris reviewed more than 50,000 pages of documents, and interviewed more than a hundred people for that story. And why lawyers for the New York Times helped get courts to agree to give him documents that had been under seal.

Kristin and Paul– who had figured most of this out for themselves– they definitely appreciated all that work.

Paul H: When Chris published the article that he did, it was very validating to know we’re not the only ones who are in this same boat. And there’s actually people who have had far worse experiences than ours. Like, ours kind of pale in comparison. And then immediately, like, within 24 hours to see 1,500 or 1,600 comments on the article talking about it. It’s like, okay, I might not have the stone that can slay the giant, but maybe The NewYork Times has the right sling and they might have the right stone to at least start the conversation.

Dan: A few weeks after Chris’s article came out, U.S. Senator Amy Klobuchar sent the top federal antitrust regulators a letter: She wanted them to take a hard look at MultiPlan.

Chris Hamby: She expressed concern about the potential for price fixing here.

Dan: Actually, Chris says some providers have already filed lawsuits against MultiPlan based on antitrust allegations.

Chris Hamby: The idea is that all the insurance companies outsource their pricing decisions to a common vendor. They’re essentially fixing prices via algorithm is the allegation.

Dan: As we noted here a few episodes ago, these antitrust regulators in the Biden administration have gotten pretty feisty. [That was the episode about the cyberattack on a company called Change Healthcare. It was called “The Hack,” if you missed it. Pretty fun!]

And I mean, those antitrust regulators have their work cut out for them. And a lot of targets. But I do want to egg them on here. I suspect you do too. Meanwhile, you’re egging US on.

Listener 1: The first thought that went through my head was I’m going to fight this because this is absolutely ridiculous. I’ve already paid for this.

Dan: A few weeks ago, we asked you for stories about your experiences with sneaky fees, often called facility fees.

Listener 2: When the facility fee is twice the office visit fee, it’s just crazy. I mean, it’s a 10-minute appointment for a prescription.

Dan: You came through, and now we’re making some calls, digging in for more details, and learning so much. We’re gonna have a sneak preview for you in a few weeks. Till then, take care of yourself.

This episode of An Arm and a Leg was produced by me, Dan Weissmann, with help from Emily Pisacreta and Claire Davenport– our summer intern. Welcome aboard, Claire!– 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. Gabe Bullard is our engagement editor. Bea Bosco is our consulting director of operations. Sarah Ballama is our operations manager.

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about healthcare in America and a core program at KFF, an independent source of health policy research, polling and journalism. Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show.

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor, allowing us to accept tax-exempt donations. You can learn more about INN at INN.org. Finally, thanks to everybody who supports this show financially. You can join in any time at https://armandalegshow.com/support/

Thanks 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,” subscribe to its newsletters. You can also follow the show on Facebook and the social platform X. 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, Pocket Casts, or wherever you listen to podcasts.

——————————
By: Dan Weissmann
Title: An Arm and a Leg: Meet the Middleman’s Middleman
Sourced From: kffhealthnews.org/news/podcast/meet-the-middleman-for-middlemen/
Published Date: Tue, 25 Jun 2024 09:00:00 +0000

Up Next

US Surgeon General Declares Gun Violence ‘a Public Health Crisis’

Don't Miss

Medicaid for Millions in America Hinges on Deloitte-Run Systems Plagued by Errors

Kaiser Health News

A Revolutionary Drug for Extreme Hunger Offers Clues to Obesity’s Complexity

Published

19 hours ago

June 16, 2025

Staff Editor

kffhealthnews.org – Claire Sibonney – 2025-06-16 04:00:00

Claire Sibonney

June 16, 2025

Ali Foley Shenk still remembers the panic when her 10-year-old son, Dean, finished a 20-ounce box of raisins in the seconds the cupboard was left unlocked. They rushed to the emergency room, fearing a dangerous bowel impaction.

The irony stung: When Dean was born, he was so weak and floppy he survived only with feeding tubes because he couldn’t suck or swallow. He was diagnosed as a baby with Prader-Willi syndrome — a rare disorder sparked by a genetic abnormality. He continued to be disinterested in food for years. But doctors warned that as Dean grew, his hunger would eventually become so uncontrollable he could gain dangerous amounts of weight and even eat until his stomach ruptured.

“It’s crazy,” said Foley Shenk, who lives in Richmond, Virginia. “All of a sudden, they flip.”

Prader-Willi syndrome affects up to 20,000 people in the U.S. The most striking symptom is its most life-threatening: an insatiable hunger known as hyperphagia that prompts caregivers to padlock cupboards and fridges, chain garbage cans, and install cameras. Until recently, the only treatment was growth hormone therapy to help patients stay leaner and grow taller, but it didn’t address appetite.

In March, the Food and Drug Administration approved Vykat XR, an extended-release version of the existing drug diazoxide choline, which eases the relentless hunger and may offer insights into the biology of extreme appetite and binge eating. This breakthrough for these patients comes as other drugs are revolutionizing how doctors treat obesity, which affects more than 40% of American adults. GLP-1 agonist medications Ozempic, Wegovy, and others also are delivering dramatic results for millions.

But what’s becoming clear is that obesity isn’t one disease — it’s many, said Jack Yanovski, a senior obesity researcher at the National Institutes of Health, who co-authored some of the Vykat XR studies. Researchers are learning that obesity’s drivers can be environmental, familial, or genetic. “It only makes sense that it’s complex to treat,” Yanovski said.

Obesity medicine is likely heading the way of treatments for high blood pressure or diabetes, with three to five effective options for different types of patients. For example, up to 15% of patients in the GLP-1 trials didn’t respond to those drugs, and at least one study found the medications didn’t significantly help Prader-Willi patients.

Yet, researchers say, efforts to understand how to treat obesity’s many causes and pathways are now in question as the Trump administration is dismantling the nation’s infrastructure for medical discovery.

While Health and Human Services Secretary Robert F. Kennedy Jr. promotes a “Make America Healthy Again” agenda centered on diet and lifestyle, federal funding for health research is being slashed, including some grants that support the study of obesity. University labs face cuts, FDA staffers are being laid off en masse, and rare disease researchers fear the ripple effects across all medical advances. Even with biotech partnerships — such as the work that led to Vykat XR — progress depends on NIH-funded labs and university researchers.

“That whole thing is likely to get disrupted now,” said Theresa Strong, research director for the Foundation for Prader-Willi Research.

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.

Subscribe to KFF Health News’ free Morning Briefing.

This article first appeared on KFF Health News and is republished here under a Creative Commons license.

The post A Revolutionary Drug for Extreme Hunger Offers Clues to Obesity’s Complexity appeared first on kffhealthnews.org

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.

USE OUR CONTENT

This story can be republished for free (details).

Subscribe to KFF Health News’ free Morning Briefing.

This article first appeared on KFF Health News and is republished here under a Creative Commons license.

The post As Federal Health Grants Shrink, Memory Cafes Help Dementia Patients and Their Caregivers appeared first on kffhealthnews.org

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.”

Subscribe to KFF Health News’ free Morning Briefing.

This article first appeared on KFF Health News and is republished here under a Creative Commons license.

The post In a Dusty Corner of California, Trump’s Threatened Cuts to Asthma Care Raise Fears appeared first on kffhealthnews.org

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.