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.

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.

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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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.