When Alyne Diamond fell off a horse in August 2023 and broke her back, her employer-based health plan through UnitedHealthcare covered her emergency care in Aspen, Colorado. It also covered related pain management and physical therapy after she returned home to New York City. The bills totaled more than $100,000.

The real estate lawyer, now 67, was eligible for Medicare at the time but hadn’t enrolled. Since she was still working, she thought her employer health insurance plan would cover her.

That misunderstanding has had financial repercussions that she continues to deal with today.

More than a year after her riding accident, Diamond was back at the emergency room after she tripped on a step while entering a New York restaurant. Her face covered in blood, Diamond was examined by staff, who did multiple CT scans. The bill for that care: $12,000.

This time, though, the insurance coverage wasn’t routine. Nearly all her claims were denied.

Diamond was caught in a fairly common coverage snag: People who have group health insurance when they become eligible for Medicare sometimes find themselves on the hook for their medical bills because their group plan stops paying.

Diamond contacted several people at UnitedHealthcare before she found out why the insurer refused to pay her claims.

When Diamond turned 65 in 2022, Medicare — unbeknownst to her — became the “primary payer” for her claims, meaning the federal health program for older or disabled people was supposed to take the lead in covering her medical bills, before other insurers paid anything. (As secondary payer, Diamond’s employer policy picked up 20% of what Medicare would have paid.)

Had she signed up for the government insurance plan when she turned 65, Diamond could have avoided a financially perilous situation that left her unexpectedly responsible for the medical costs she incurred during that time.

She began to understand what had happened as she made inquiries about the denied claims.

Diamond said she was told that UnitedHealthcare audited her claims last year and determined it had been improperly paying for her care, perhaps because her pricey medical claims after her fall from the horse raised a red flag.

The insurer not only stopped paying current claims but also moved to claw back tens of thousands of dollars it had paid to providers in the two years since she turned 65. Some of those providers are now seeking payment from her.

“It’s horrifying,” she said. “For about two months I was devastated. I thought, ‘Where am I going to get the money to pay all these people? There goes my retirement.’”

The mistake has already cost her $25,000 and may cost her much more if providers continue to bill her for amounts that UnitedHealthcare has clawed back for care she received before signing up for Medicare in February.

A UnitedHealthcare spokesperson declined to provide an on-the-record statement, citing safety concerns.

Patient advocates say they frequently hear from people who, like Diamond, thought they didn’t need to sign up for Medicare upon turning 65 because they had group health coverage.

That assumption is generally correct if they or their spouse is working at a company with at least 20 employees. In that case, employer coverage is considered primary and they can delay signing up for Medicare as long as they or their spouse continues to be employed there.

But if someone has employer coverage through a company with fewer than 20 workers, Medicare generally becomes the primary payer when they turn 65. The real estate law firm at which Diamond is a partner has a handful of employees.

Similarly, if someone is older than 65 and has retiree health coverage or has left their job and opted to continue their employer coverage under the Consolidated Omnibus Budget Reconciliation Act, also known as COBRA, Medicare pays first. The issue can also arise for people who are younger than 65 if they are eligible for Medicare because of a disability. In those instances, Medicare pays first if they or their family member works at a company with fewer than 100 employees.

If people in these groups don’t sign up for Medicare when they become eligible, they can find themselves responsible for all their medical bills for years. (They may also owe a penalty for late enrollment in the Medicare program.)

“It’s very alarming and there’s no current fix to the situation,” said Fred Riccardi, president of the New York-based Medicare Rights Center, a national patient advocacy organization.

The Centers for Medicare & Medicaid Services did not respond to a request for comment.

Mark Scherzer, a lawyer in Germantown, New York, who helps people with insurance problems, and who advised Diamond, said he gets calls a couple of times a month from people who face this issue.

“What I see constantly now is that insurers go back and they claw back the money from the doctor and the doctor then claws the money back from the patient,” he said.

Costly claims may trigger an insurer to examine someone’s coverage.

Those big claims “seem to get on the insurer’s radar,” said Casey Schwarz, senior counsel for education and federal policy at the Medicare Rights Center.

UnitedHealthcare has recouped over $50,000 in medical bills from some of the providers who treated Diamond in New York after her riding accident. She’s paid them about $25,000 so far. Some have agreed to let her pay the amount Medicare would have paid.

But there may be more bills to come. Under New York law, health plans have two years after claims are paid to claw back payments from providers, and providers have three years to sue patients for medical debt. So, while there is still time for Diamond to be billed, the clock will eventually run out.

Diamond plans to sue the broker who manages her company’s health plan and other benefits for negligence.

“The Medicare secondary payment rules basically say that if you didn’t sign up because you didn’t know Medicare was supposed to be primary, that’s on you,” said Melanie Lambert, senior Medicare advocate at the Center for Medicare Advocacy in Connecticut.

Lambert said she has seen the issue “many, many times.” In some instances, if a beneficiary can demonstrate they were misled by an employer or a federal employee, they may qualify for relief or a special enrollment period, she said.

In a 2023 letter to the acting secretary of the Department of Labor, the National Association of Insurance Commissioners advocated applying a “commonsense rule to COBRA plans, individual health insurance, and other coverage sources: those entitled to Medicare Part B but not enrolled in it should not lose benefits they pay for from a non-Medicare coverage source.”

The Department of Labor didn’t respond to a request for comment.

In earlier times, people started collecting Social Security benefits then automatically got Medicare when they turned 65.

Now, enrolling in Medicare is more complicated for many people, said Tricia Neuman, a senior vice president and the executive director of the Program on Medicare Policy at KFF, a health information nonprofit that includes KFF Health News.

“As more people are delaying going on Social Security and delaying going on Medicare, there’s more opportunities for people to make mistakes, and those mistakes are costly,” Neuman said.

Coverage experts say there are no clear requirements for insurers, employers, or the federal government to notify people about how the payment rules governing coordination of benefits between health plans may change when they become eligible for Medicare.

The information appears in a chart in the government’s “Medicare & You” handbook, if someone knows to look for it. But it is not easy to find.

A straightforward fix could solve many of the problems people face in this area, Scherzer said. Since every health plan knows its enrollees’ ages, why not require them to notify people approaching 65 of possible benefit coordination issues with Medicare? “It’s so simple and such a no-brainer.”

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 Have Job-Based Health Coverage at 65? You May Still Want To Sign Up for Medicare 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: Centrist

This content provides a detailed and fact-based account of the complexities and pitfalls associated with Medicare enrollment and coordination of benefits with employer health plans. The tone is neutral, focusing on patient experiences, insurance practices, and systemic challenges without advocating for specific partisan policies. It presents information from multiple stakeholders, including patient advocates, insurers, and government entities, aiming to inform readers rather than promote a political agenda. Such balanced reporting aligns with a centrist perspective that highlights practical issues in healthcare administration without ideological bias.

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.