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An Arm and a Leg: Attack of the Medicare Machines

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Dan Weissmann
Wed, 10 Apr 2024 09:00:00 +0000

Covering the American health care system means we tell some scary stories. This episode of “An Arm and a Leg” sounds like a real horror movie. 

It uses one of Hollywood’s favorite tropes: machines taking over. And the machines belong to the private health insurance company UnitedHealth Group. 

Host Dan Weissmann talks to Stat News reporter Bob Herman about his investigation into Medicare Advantage plans that use an algorithm to make decisions about patient care. The algorithm is owned by a subsidiary of UnitedHealth Group.

Herman tells Weissmann that some of UnitedHealth’s own employees say the algorithm creates a “moral crisis” in which care is unfairly denied.

Scary stuff! Such reporting even has caught the eye of powerful people in government, putting Medicare Advantage plans under scrutiny.

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: Son of Medicare: Attack of the Machines

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–

So this is kind of a horror story. But it’s not quite the kind of story it might sound like at first.

Because at first, it might sound like a horror story about machines taking over, making all the decisions– and making terrible, horrifying choices. Very age-of-Artificial Intelligence.

But this is really a story about decisions made by people. For money.

It’s also kind of a twofer sequel– like those movies that pit two characters from earlier stories against each other. Like Godzilla vs King Kong, or Alien vs Predator.

Although in this case, I’ve gotta admit, the two monsters are not necessarily fighting each other.

Let’s get reacquainted with them. 

On one side, coming back from our very last episode, we’ve got Medicare Advantage: This is the version of Medicare that’s run by private insurance companies. 

It’s got a bright and appealing side, compared to the traditional Medicare program run by the federal government, because: It can cost a lot less, month to month — saving people money on premiums. And it often comes with extra benefits, like dental coverage, which traditional Medicare doesn’t offer. [I know.]

But Medicare Advantage can have a dark side, which is basically: Well, you end up dealing with private insurance companies for the rest of your life. You need something — a test, a procedure, whatever — they might decide not to cover it.

Which can be scary. 

Our other returning monster — am I really calling them a monster? — well, last time we talked about them, in 2023, we had an expert calling them a behemoth. That’s United HealthGroup. You might remember, they’re not only one of the biggest insurance companies 

— and maybe not-coincidentally the very biggest provider of Medicare Advantage plans —

they’ve also got a whole other business– under the umbrella name Optum. And Optum has spent the last bunch of years buying up a gazillion other health care companies of every kind. 

That includes medical practices — they employ more doctors than anyone else, by a huge margin. It includes surgery centers, and home-health companies, and every kind of middleman company you can imagine that works behind the scenes — and have their hands in a huge percentage of doctor bills and pharmacy visits. 

A few years ago, United bought a company called NaviHealth, which provides services to insurance companies that run Medicare Advantage plans. 

NaviHealth’s job is to decide how long someone needs to stay in a nursing home, like if you’re discharged from a hospital after surgery, but you’re not ready to go home yet.

And the horror story– the stories, as dug up by reporters — starts after United bought NaviHealth.

And according to their reports, it involves people getting kicked out of those nursing homes who aren’t ready to go home. 

People getting sent home who can’t walk up the stairs in their house. Who can’t walk at all. Who are on feeding tubes. People who NaviHealth’s own employees are saying, “Wait. This person isn’t ready to go home.”

But their new bosses have told them: You’re not really making these decisions anymore. 

This is where machines do enter the picture.

NaviHealth’s distinctive offering has always been its proprietary algorithm– an algorithm that makes predictions about how long any given patient might need to stay. 

Before United bought the company, that algorithm was used as a guide, a first-guess. Humans weighed in with their own judgment about what patients needed.

After United bought the company, people inside have told reporters, that changed: The new owners basically told their employees, If the algorithm says someone can go home after x days, that’s when we’re cutting them off.

 Like pretty much any horror movie, this story’s got people running around trying to tell everyone: HEY, WATCH OUT! THERE’S SOMETHING BIG AND DANGEROUS HAPPENING HERE.

And in this case, they’ve actually gotten the attention of some people who might have the power to do something about it. Now, what those people will do? We don’t know yet. 

And, by the way: Yes, I said at the end of our last episode that we’d be talking about Medicaid this time around. That’s coming! But for now, strap in for this one. 

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.

So. I said that, like every horror movie, this one has people who are seeing what’s going on and are trying to warn everybody?

Like those movies, we’re gonna follow one of those people, watch them discover the problem, see how deep it goes, and start ringing alarm bells. Let’s meet our guy.

Bob Herman: My name is Bob Herman. I’m a reporter at STAT News

Dan: Stat is an amazing medical news publication. Bob covers the business of medicine there. Bob started working on this story in November 2022, after talking to a source who runs nursing homes. Bob’s source was complaining about Medicare Advantage. 

Bob Herman: There were a lot of payment denials. They just weren’t able to get paid. And just offhandedly, the source mentioned like, um, you know, and they’re attributing everything to this algorithm. This algorithm said, You know, only 17 days for our patients and then time’s up and I went running to Casey Ross 

Dan: Casey is a reporter at Stat who focuses on tech and AI in healthcare. Bob said, hey, what do you think of this? Wanna team up?

Bob Herman: And he was hooked.

Dan: They started talking to people who worked at nursing homes, talking to experts, and talking to families. And it was clear: They were onto something. 

Bob Herman: It took so many families by surprise to be like, what do you mean we’re going home? The, you know, my husband, my wife, my grandma, my grandpa, they can’t go to the bathroom on their own. Like, what do you? It was just, it was so confusing to people. It seemed like such a, a cold calculation,

Dan: One person they ended up talking with was Gloria Bent. Her husband Gary was sent to a nursing home for rehab after brain surgery for cancer. He was weak. He couldn’t walk. And he had something called “left neglect”: His brain didn’t register that there was a left side of his body. Here’s Gloria testifying before a Senate committee about how — when Gary arrived at the nursing home — the first thing he got was a discharge date. That is…

Gloria Bent: Before the staff of the facility could even evaluate my husband or develop a plan of care, I was contacted by someone who identified themselves as my Navi Health Care Coordinator

Dan: Gloria says when she told the nursing home staff she’d heard from NaviHealth, they groaned. And told her what to expect. 

Gloria Bent: I was told that I had just entered a battlefield, that I could expect a series of notices of denial of Medicare payment accompanied by a discharge date that would be two days after I got that notice.

Dan: Yeah, they said she’d get two days notice. Gloria says the nursing home staff told her she’d have 24 hours to appeal each of those, but even if she won, the denials would keep coming. In fact, they said,

Gloria Bent: If we won a couple of appeals, then we could expect that the frequency with which these denials were going to come would increase.

Dan: All of which happened. NaviHealth started issuing denials July 15, 2022, after Gary had been at the home for a month.

Gloria appealed. She told senators what the doctor who evaluated the appeal found: Gary couldn’t  walk. He couldn’t even move — like from bed to a chair — without help from two people.. That reviewer took Gloria’s side.

Her husband’s next denial came a week after the first. Gloria won that appeal too. She says the reviewer noted that Gary needed maximum assistance with activities of daily living. 

The third denial came four days later, and this time Gloria lost. 

Gary came home in an ambulance: As Gloria testified, he couldn’t get into or out of a car without assistance from someone with special training. 

And when he got into the ambulance, he had a fever. The next morning, he wound up in another ambulance — headed to a hospital with meningitis. He lost a lot of the functioning he’d picked up at the nursing home. 

He died at home a few months later. When Gloria testified in the Senate, all of it was still fresh. She told them that as awful as Gary’s illness and decline had been, the fights with insurance were an added trauma.

Gloria Bent: This should not be happening to families and patients. It’s cruel. Our family continues to struggle with the question that I hear you asking today. Why are people who are looking at patients only on paper or through the lens of an algorithm

making decisions that deny the services judged necessary by health care providers who know their patients.

Dan: Bob Herman calls Gloria’s story heartbreaking, like so many others he’s seen. 

And his attention goes to one part of Gloria’s story beyond denial-by-algorithm. 

Because: It’s not just one denial. It’s that series of denials. You can appeal, but as Gloria testified, the denials speed up. And you have to win every single time. The company only has to win once. 

I mean, unless you’re ready to get a lawyer and take your chances in court– which, in addition to being a major undertaking, also means racking up nursing home bills and legal bills you may never get reimbursed for, while the court process plays out. 

Bob Herman: This appeal system is designed in such a way that people will give up. If you have a job, you know, even if you don’t, and you’re, and you’re also trying to take care of a family member, um, it’s a rigorous monotonous process that will chew people up and spit them out and then the people are inevitably going to give up. And I think in some ways insurers know that.

Dan: Going out on a limb to say: I think so too. So Bob and Casey’s first story on NaviHealth came out in March of 2023. They were the characters in the movie who go, “HEY, I THINK THERE’S SOMETHING REALLY BAD HAPPENING HERE.”

And people started paying attention. Like the U.S. Senate. which held that hearing where Gloria Bent told her story. 

And like the federal agency that runs Medicare — the Centers for Medicare and Medicaid Services, CMS. 

CMS finalized a rule that told insurers: You can’t deny care to people just from using an algorithm. 

And something else happened too: Bob and Casey started suddenly getting a lot MORE information. 

Bob Herman: We received so many responses from people and it just opened the floodgates for former employees, just patients and family members, just everyone across the board.

Dan: And not just former employees. Current employees. And what they learned was: There was absolutely a strategy at work in how this algorithm was being used. It was strategy some people on the inside didn’t feel good about. 

And this strategy got developed after United HealthGroup — and its subsidiary, Optum– bought NaviHealth in 2020. And here’s what NaviHealth employees started telling Casey and Bob about that strategy.

Bob Herman: For some of us, it’s creating this moral crisis. Like we know that we are having to listen to an algorithm to essentially kick someone out of a nursing home, even though we know that they can barely walk 20 feet.

Dan: What Bob and Casey learned from insiders– and how it connects to United’s role as a health care behemoth– that’s next.

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering healthcare in America. Their reporters do amazing work, and I’m honored to work with them. We’ll have a little more about KFF Health News at the end of this episode.

So, NaviHealth — the company with the algorithm — got started in 2015.. And the idea behind it was to use data to get people home faster from nursing homes if they didn’t actually need to be there. 

Because there was a lot of evidence that some people were being kept longer than they needed. 

Bob Herman: There is some validity to the idea that there’s, there’s wasteful care in Medicare, like, you know, there’s been cases in the past proving that people stay in a nursing home for way longer than is necessary. And obviously there’s financial incentives for nursing homes to keep people as long as possible. 

Dan: Traditional Medicare does have limits on nursing home care — but if you need “post-acute care” — help getting back on your feet after leaving a hospital traditional Medicare pays in full for 20 days– pretty much no questions asked. One of the selling points of Medicare Advantage — like selling points to policy nerds and politicians — was that it could cut waste, by asking those kinds of questions. NaviHealth and its algorithm were designed to help Medicare Advantage plans ask those questions in a smart way. 

Bob Herman: There were… a lot of believers within NaviHealth that were like, okay, I think we’re doing the right thing. We’re trying to make sure people get home sooner because who doesn’t want to be at home.  

Dan: And as those employees told Bob and Casey: Before United and Optum came in, the algorithm had been there as a guide — a kind of first guess — but not the final word. 

NaviHealth has staff people who interact directly with patients. And back in the day, the pre-United day, Bob and Casey learned that those staff could make their own judgments. 

Which made sense, because the algorithm doesn’t know everything about any individual case. It’s just making predictions based on the data it has.

Bob Herman: And there was just, just this noticeable change after United and OptiMentor that it felt more rigid. There’s no more variation. 

Dan: If the algorithm says you go, you are pretty much going.

Bob Herman: United has said, no, that’s not the case, but obviously these documents and other communications that we’ve gotten kind of say otherwise.

Dan: Because these employees weren’t just talking. They were sharing. Internal memos. Emails. Training materials. All making clear: The company wanted people shipped out on the algorithm’s timetable. 

Bob Herman: Documents came in showing that like this was a pretty explicit strategy. You know, UnitedHealth was telling its employees. Listen, we have this algorithm. We think it’s really good. So when it tells you how many, how many days someone should be in a nursing home, stick to it.

Dan: Stick to it or maybe be fired. Bob and Casey got documents — employee performance goals– saying: How close you stick to the algorithm’s recommendations? That’s part of how we’re evaluating your job performance. 

Bob Herman: It’s okay. Algorithm said 17 days, you better not really go outside of that because your job is on the line. 

Dan: Here’s how closely people were expected to stick to it. In 2022, employee performance goals shared with STAT showed that workers were expected to keep actual time in nursing homes to within three percent of what the algorithm said it should be. Across the board.

So, say you had 10 patients, and the algorithm said they each should get 10 days. That’s 100 days. Your job was to make sure that the total actual days for those patients didn’t go past 103 days.

Then, in 2023, the expectations got more stringent: Stay within one percent of the algorithm’s predictions. 10 patients, the algorithm says 100 days total? Don’t let it get past a hundred and one. 

Bob Herman: Like that is, almost nothing. Like what, what, your hands are tied. If you’re that employee, what are you going to do? Are you going to get fired? Are you going to do what you’re told?

Dan: And one person who ended up talking, to did get fired. 

Bob Herman: Correct. Yes. Uh, Amber Lynch did get fired And what she said was what we had also heard just more broadly was it, it created this internal conflict, like, Oh my God, what I’m doing doesn’t feel right. 

Dan: Amber Lynch was a case manager. She told Bob and Casey about onepatient who couldn’t climb the stairs in his home after knee surgery. But the algorithm said he was ready. Amber’s supervisor said, “Have you asked the nursing home staff if they’ve tried to teach him butt bumping?” Amber grit her teeth and made the suggestion to the rehab director.

Amber Lynch: And she looked at me like I had two heads. She’s like, he is 78 years old. He’s not going to do that. He’s not safe to climb the stairs yet. He’s not doing it. We’re not going to have it butt bump the stairs.

Dan: Amber told Bob and Casey that when she got fired, it was partly for failing to hit the one percent target and partly for being late with paperwork– which she told Bob and Casey she fell behind because her caseload was so heavy.

She wasn’t the only one with that complaint. 

Bob and Casey’s story shows another NaviHealth case manager– not named in the story because they’re still on the job — in their home office, struggling to keep up. 

That week, they were supposed to work with 27 patients and their families. Gather documents, hold meetings. Another week, shortly before, they’d had 40 patients. 

“Do you think I was able to process everything correctly and call everyone correctly the way I was supposed to?” the case manager asked. “No. It’s impossible. No one can be that fast and that effective and capture all of the information that’s needed.”

Bob and Casey watched this case manager fill out a digital form, feeding the algorithm the information it asked for on a man in his 80s with heart failure, kidney disease, diabetes and trouble swallowing, who was recovering from a broken shoulder. 

A few minutes later, the computer spat out a number: 17 days. 

The case manager didn’t have a lot of time or leeway to argue, but they were skeptical that the algorithm could get that number exactly right based on only the data it had. 

And what data is the algorithm working with? What’s it comparing the data on any given patient TO? Bob Herman says that’s a big question.

Bob Herman: It’s something that for sure, like Casey and I, it’s been bothering us. Like, what, how is this whole system? Like, what is it based on? And we were never really given straight answers on that. NaviHealth and Optum and United have said it’s based on millions of patient records over time. The sources of that, it’s, it’s a little unclear, where all that’s coming from. 

Dan: Bob and Casey talked with an expert named Ziad Obermeyer, a professor at the University of California Berkeley School of Public Health, who is not anti-algorithm. He actually builds algorithmic tools for decision making in public health. 

AND he’s done research showing that some widely-used algorithms just scale up and automate things like racial bias.

He told Bob and Casey: Using an algorithm based on how long other, earlier patients have stayed in a nursing home — that’s not a great idea.

Because people get forced out of nursing homes, in his words, “because they can’t pay or because their insurance sucks.” He said, “So the algorightm is basically learning all the inequalities of our current system.”

And leaving aside that kind of bias, it seems unlikely to Bob that any algorithm could predict exactly what every single patient will need every single time. 

No matter how much data it’s got, it’s predicting from averages.

Bob Herman: It reminds me of, like, a basketball game where let’s say someone averages 27 points per game. They don’t have 27 points every single, the game they go out there. It just varies from time to time.

Dan: But the NaviHealth algorithm doesn’t have to be right every time for United to make money using it. 

Using it to make decisions can allow United to boost profits coming and going.

Bob Herman: United health and the other insurance companies that use Navi health. Are using this technology to more or less kick people out of nursing homes before they’re ready. And that is the claims denial side where it’s like, okay, let’s save as much money as we can instead of having to pay it to a nursing home.

Dan: And that’s just one side of it. The insurance side. Claims denial. But United isn’t just in the insurance business. 

United’s Optum side is in every other part of health care. 

Including — in the years since United took over NaviHealth — home health services. The kind of services you’re likely to need when you leave a nursing home.

In 2022, Optum bought one top home health company in what one trade publication called a “monster, jaw-dropping mega-deal” — more than 5 billion dollars. In 2023, Optum made a deal to buy a second mega-provider. 

Bob and Casey’s story says NaviHealth’s shortening nursing home stays is integral to United’s strategy for these acquisitions. It does seem to open up new opportunities.

Bob Herman: You’re out of the nursing home because our algorithm said so. Now we’re going to send you to a home health agency or we’re going to send some home health aides into your home. And by the way, we own them. 

Dan: Oh, right, because: If you’re in a Medicare Advantage plan, your insurer can tell you which providers are covered. 

Bob Herman: So the real question becomes, how much is United potentially paying itself?

Dan: That is: How much might United end up taking money out of one pocket — the health insurance side — and paying itself into another pocket, Optum’s home-health services?

We don’t know the answer to how much United is paying itself in this way, or hoping to. And United has said its insurance arm doesn’t favor its in-house businesses.

But it seems like a reasonable question to ask. Actually, it’s a question the feds seem to be asking.

Optum hasn’t wrapped up its purchase of that second home-health company yet, and in February 2024, the Wall Street Journal and other outlets reported that the U.S. Department of Justice had opened an anti-trust investigation. 

And you don’t have to be in a Medicare Advantage plan run by United to get kicked out of a nursing home on an algorithm’s say-so. 

Bob Herman says NaviHealth sells its algorithm-driven services to other big insurance companies 

He says, put together, the companies that use NaviHealth cover as many as  15 million people — about half of everybody in Medicare Advantage.

Bob Herman: Odds are, if you’re in a Medicare Advantage plan, there’s a, there’s a really good shot that your coverage policies, if you get really sick and need nursing home care, for example, or any kind of post acute care, an algorithm could be at play at some point.

Dan: This is the dark side of Medicare Advantage. 

Bob Herman: Everyone loves their Medicare Advantage plan when they first sign up, right? Because it’s offering all these bells and whistles. It’s, here’s a gym membership. It’s got dental and vision, which regular Medicare doesn’t have. And it’s also just, it’s, it’s cheaper. Like, if it’s just from a financial point of view, if, if you’re a low income senior, How do you turn it down? There’s, there’s so many plans that offer like free, there’s no monthly premiums in addition to all the bells and whistles. But Nobody understands the trade offs , When you’re signing up for Medicare and Medicare Advantage, you’re on the healthier side of, of being a senior, right?

Dan: And none of us can count on staying healthy forever. When you sign up for Medicare  you’re signing up your future self — whether that’s ten or twenty or more years out. That future you, might really need good medical care. 

And at that point, as we explained in our last episode, if Medicare Advantage isn’t working for you, you may not be able to get out of it.

Bob Herman: You could potentially not fully get the care that you need. We shouldn’t assume that, that this couldn’t happen to us because it can. 

Dan: So, yeah. Kind of a horror story. But: Unlike some horror movies, when Bob and Casey started publishing their stories, they started getting people’s attention.

We mentioned the new rules from the feds and the senate hearings after Bob and Casey’s first story in March 2023

Later in the year, when Bob and Casey published their story with documents and stories from inside NaviHealth, a class-action lawsuit got filed.

Since then, CMS has said it will step up audits under its new rules. 

Bob Herman: There was a memo that CMS sent out to Medicare advantage plans that said, Hey, listen, we’re telling you again, do not deny care solely on any AI or algorithms. Like just don’t do it. 

Dan: And in February 2024, the Senate held another hearing. 

Here’s Senator Elizabeth Warren at that hearing, saying these CMS rules aren’t enough. We need stronger guardrails.

Elizabeth Warren: Until CMS can verify that AI algorithms reliably adhere to Medicare coverage standards by law, then my view on this is CMS should prohibit insurance companies from using them in their MA plans for coverage decisions. They’ve got to prove they work before they put them in place.

Dan: So people — people with at least some power– are paying some attention. 

Bob Herman: I don’t think this is necessarily going to escape. Political scrutiny for a while. 

Dan: So, basically, the story isn’t over. 

This isn’t one of those horror movies where the monster’s been safely defeated at the end, and everybody just starts cleaning up the mess. And it’s not one where the monster is just on the loose, unleashing the apocalypse. 

Because it’s not a movie. There’s no ending. There’s just all of us trying to figure out what’s going on, and what we can maybe do about it.

One last thing: I got a lot of emails after our last episode, where we laid out a lot of information about Medicare Advantage and traditional Medicare. Most of it was along the lines of, Thank you! That was really helpful! Which made me feel really good.

And we got a couple notes about things we could have done better. Especially this: We said Traditional Medicare leaves you on the hook for 20 percent of everything, without an out of pocket limit. 

Which is true — but only for Medicare Part B: Doctor visits, outpatient surgeries and tests. Which can add up, for sure.

Medicare Part A — if you’re actually hospitalized — covers most services at 100 percent, after you meet the deductible. In 2024 that’s one thousand, six hundred thirty-two dollars. 

Thanks to Clarke Lancina for pointing that out. 

There have been a bunch of other, amazing notes in my inbox recently, and I want to say: Please keep them coming. 

If you go to arm and a leg show dot com, slash, contact, whatever you type there goes straight to my inbox. You can attach stuff too: documents… voice memos. 

Please let me hear from you. That’s arm and a leg show dot com, slash contact.

I’ll catch 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 edited by Ellen Weiss. 

Adam Raymonda is our audio wizard. Our music is by Dave Weiner and blue dot sessions. Extra music in this episode from Epidemic Sound.

Gabrielle Healy is our managing editor for audience. She edits the first aid kit newsletter. 

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

And 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 arm and a leg show dot com, slash, support — 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 the newsletter. 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: Attack of the Medicare Machines
Sourced From: kffhealthnews.org/news/podcast/attack-of-the-medicare-machines/
Published Date: Wed, 10 Apr 2024 09:00:00 +0000

Kaiser Health News

The Price You Pay for an Obamacare Plan Could Surge Next Year

Published

on

kffhealthnews.org – Daniel Chang – 2025-06-17 04:00:00


Josefina Muralles, a part-time night receptionist in North Miami Beach, struggles to care for her family while relying on subsidized Obamacare coverage. Her household income is too high for Medicaid but qualifies for Affordable Care Act subsidies, which are set to expire at the end of 2025. Without them, premiums could rise by 75% or more, threatening access to critical care. Over 24 million Americans, especially in Florida and Texas, face similar risks. If the subsidies lapse, the uninsured rate could jump by millions. Advocates warn that without swift congressional action, low- and middle-income families will face devastating coverage losses.


MIAMI — Josefina Muralles works a part-time overnight shift as a receptionist at a Miami Beach condominium so that during the day she can care for her three kids, her aging mother, and her brother, who is paralyzed.

She helps her mother feed, bathe, and give medicine to her adult brother, Rodrigo Muralles, who has epilepsy and became disabled after contracting covid-19 in 2020.

“He lives because we feed him and take care of his personal needs,” said Josefina Muralles, 41. “He doesn’t say, ‘I need this or that.’ He has forgotten everything.”

Though her husband works full time, the arrangement means their household income is just above the federal poverty line — too high to qualify for Florida’s Medicaid program but low enough to make Muralles and her husband eligible for subsidized health insurance through the Affordable Care Act marketplace, also known as Obamacare.

Next year, Muralles said, she and her husband may not be able to afford that health insurance coverage, which has paid for her prescription blood thinners, cholesterol medication, and two surgeries, including one to treat a genetic disorder.

Extra subsidies put in place during the pandemic — which reduced the premiums Muralles and her husband paid by more than half, to $30 a month — are in place only through Dec. 31. Without enhanced subsidies, Affordable Care Act insurance premiums would rise by more than 75% on average, with bills for people in some states more than doubling, according to estimates from KFF, a health information nonprofit that includes KFF Health News.

Florida and Texas would be hit especially hard, as they have more people enrolled in the marketplace than other states. Some of their congressional districts alone, especially in South Florida, have more people signed up for Obamacare than entire states.

Like many of the more than 24 million Americans enrolled in the insurance marketplace this year, Muralles was unaware that the enhanced subsidies are slated to expire. She said she cannot afford a premium hike because inflation has already eaten into her household’s budget.

“The rent is going up,” she said. “The water bill is going up.”

Low-income enrollees like the Muralles couple would see the biggest percentage increases in premiums if enhanced subsidies expire.

Middle-income enrollees who earn more than four times the federal poverty line would no longer be eligible for subsidies at all. Those middle-income enrollees (who earn at least $62,600 for a single person in 2025) are disproportionately older, self-employed, and living in rural areas.

Julio Fuentes, president of the Florida State Hispanic Chamber of Commerce, said many of his organization’s members are small business owners who rely on Obamacare for health coverage.

“It’s either this or nothing,” he said.

The Congressional Budget Office estimated that letting the enhanced subsidies expire would, by 2034, increase the number of people without health insurance by 4.2 million. In tandem with changes to Medicaid in the House of Representatives’ reconciliation bill and the Trump administration’s proposed rules for the marketplace, including toughening income verification and shortening enrollment periods, it would increase the number of uninsured people by 16 million over that time period.

A study by the Urban Institute, a nonprofit think tank, found that Hispanic and Black people would see greater coverage losses than other groups if the extra subsidies lapse.

Fuentes noted that about 5 million Hispanics are enrolled in the ACA marketplace, and that Donald Trump won the Hispanic vote in Florida in 2024. He hopes the president and congressional Republicans see extending the enhanced subsidies as a way to hold on to those voters.

“This is probably a good way, or a good start, to possibly grow that base even more,” he said.

Enrollment in the marketplace has grown faster since 2020 in the states won by Trump in 2024. A recent KFF survey found that 45% of Americans who buy their own health insurance identify as or lean Republican, including 3 in 10 who identify as Make America Great Again supporters. Smaller shares identify as Democrats or Democratic-leaning independents (35%) or do not lean toward either party (20%).

Kush Desai, a White House spokesperson, said the rules proposed by the Trump administration, combined with the provisions in the House-passed budget bill, would “strengthen the ACA marketplace.” He noted that the CBO projects the legislation would reduce premiums for some plans about 12% on average by 2034 — but out-of-pocket costs would rise or remain the same for most subsidized ACA consumers.

“Democrats know Americans broadly support ending waste, fraud, and abuse, as The One, Big, Beautiful Bill does, which is why they are desperately trying to change the conversation,” Desai said.

But Lauren Aronson, executive director of Keep Americans Covered, a group in Washington, D.C., representing health insurers, hospitals, physicians, and patient advocates, said it is critical to raise awareness about the likely impact of losing the enhanced subsidies, which are also known as advanced premium tax credits. She is encouraged that Democrats have proposed legislation to extend the enhanced tax credits, and that some Republican senators have voiced support.

What worries Aronson most is that the Republican-controlled Congress is more focused on extending tax cuts than enhanced subsidies, she said. The current bill extending the 2017 tax cuts would increase the federal deficit by about $2.4 trillion over the next decade, according to the CBO, while making the enhanced subsidies permanent would increase the deficit by $358 billion over roughly the same period.

“Congress is moving forward on a tax reconciliation package that purports to benefit working families,” Aronson said. “But if you don’t take care of the tax credits, working families will be left holding the bag.”

Brian Blase, president of Paragon Health Institute, a conservative health policy think tank, said the enhanced subsidies were supposed to be a temporary measure during the covid-19 pandemic to help people at risk of losing coverage.

Instead, he said, the enhanced subsidies facilitated fraud because enrollees did not need to verify their income eligibility to receive zero-premium plans if they reported incomes at or near the federal poverty level.

The enhanced subsidies also worsen health inflation, discourage employers from offering health insurance benefits, and crowd out alternative models, such as short-term insurance and Farm Bureau plans, Blase said.

“Permitting these subsidies to expire would just be going back to Obamacare as it was written,” Blase said. “That is a more efficient program than the program that we have now.”

New rules for the marketplace proposed by the Trump administration in March are already designed to address fraud, said Anna Howard, a policy expert with the American Cancer Society Cancer Action Network, which advocates for increased health insurance coverage. Howard said extending the enhanced tax credits would help ensure that people who are legitimately eligible for coverage can get it.

“We don’t want to see over 5 million people be kicked off their health insurance coverage out of fears of fraud when the policies being proposed don’t necessarily address fraud,” she said.

Without affordable premiums, many consumers will turn to short-term health plans, health care cost-sharing ministries, and other forms of coverage that do not have the benefits or protections of the health law, she said.

“These are plans that don’t provide coverage for prescription drugs, or they have lifetime and annual limits,” she said. “For a cancer patient, those plans don’t work.”

Though the enhanced subsidies do not expire until the end of the year, the Blue Cross Blue Shield Association would prefer Congress to act by fall to avoid confusion during open enrollment, said David Merritt, a senior vice president. Insurers are preparing rates to meet state deadlines. By October, consumers will receive 60-day plan renewal notices with their 2026 premiums.

Without enhanced subsidies, Merritt said, competition in the marketplace will wither, leading to fewer coverage options and higher prices, especially in states that have not expanded Medicaid eligibility and where Obamacare enrollment spiked during the past four years, like Florida and Texas. “Voters and patients are really going to see the impact,” he said.

Republican and Democratic representatives for some of the Florida congressional districts with the highest numbers of people in the marketplace did not respond to repeated interview requests.

Muralles, of North Miami, Florida, said she wants her representatives to work in the interest of constituents like herself, who need health insurance coverage to care for their families.

“Now is the time to prove to us that they are with us,” Muralles said. “When everybody’s healthy, everybody goes to work, everybody can pay taxes, everybody can have a better life.”

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 The Price You Pay for an Obamacare Plan Could Surge Next Year 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 primarily advocates for the continuation of enhanced subsidies under the Affordable Care Act, highlighting the potential negative impacts on low- and middle-income Americans if these subsidies expire. It includes voices concerned about healthcare affordability and coverage losses, emphasizing the human and economic consequences. While it does present perspectives from conservative sources criticizing the subsidies and noting fraud concerns, the overall tone and framing favor sustaining or expanding government healthcare support, which aligns with center-left policy priorities. The article avoids overt partisan rhetoric, aiming for a balanced but slightly progressive leaning on health policy matters.

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

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


Dean Shenk, a teen with Prader-Willi syndrome—a rare genetic disorder causing insatiable hunger—found life-changing relief through Vykat XR, a new FDA-approved drug that regulates hunger signals in the brain. Once at constant risk of life-threatening binge episodes, Dean now experiences calmer behavior, increased muscle mass, and a healthier life. Though the drug costs over \$466,000 annually, its impact is profound. Vykat XR marks progress in obesity treatment, revealing obesity’s complex roots and aiding broader research. However, federal funding cuts threaten such breakthroughs, prompting concerns from researchers who rely on NIH-backed support to continue developing treatments for rare and genetic disorders.


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.

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

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


Rob Kennedy, diagnosed with early onset Alzheimer’s, attends a memory cafe twice monthly in Clarks Summit, Pennsylvania. These cafes, found nationwide, provide social support for people with cognitive impairment and their caregivers through low-cost activities like trivia and crafts. Kennedy credits the gatherings with giving him purpose and easing isolation. With dementia cases rising, memory cafes offer affordable community-based relief, especially as federal health funding faces cuts. Wisconsin leads the nation in memory cafes, supported by grassroots efforts and state dementia care networks. The model emphasizes hospitality and community, benefiting both patients and caregivers by fostering connection and reducing stress.


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.

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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This story can be republished for free (details).

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

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.

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