Mason Henderson with his mother, Tabitha Lowe, in November during a visit to New York, where Henderson was participating in a clinical trial to treat his brain cancer. Henderson died in May after a two-year battle with the disease. (Jerry Lowe)

Eighteen months after his initial diagnosis, chemotherapy hadn’t slowed 21-year-old Mason Henderson’s rare brain tumor, which had spread to his spinal fluid. So he left his home in southeastern Texas to spend three weeks in a clinical trial in New York City.

But that failed, too, leaving a murky path for Henderson, whose cancer was so rare the World Health Organization had only given it a name in 2021. So early this year, Henderson’s doctors, evaluating his tumor’s deep genetic language, turned to a drug made by Merck and AstraZeneca called Lynparza.

It was not the standard of care for Henderson’s condition — there wasn’t really any standard, which is not unusual for rare cancers. And Henderson’s insurance would not pay for it, despite the careful justification given by the two specialists treating him.

“They have no guidelines for his cancer,” Henderson’s mother, Tabitha Lowe, said in a March interview with KFF Health News. “They’re discriminating against him because his cancer is so rare.”

Tabitha Lowe and her son Mason Henderson. Lowe spent six weeks trying to get an $8,700-a-month drug for her son that the family’s pharmacy benefit manager wouldn’t cover. (Tabitha Lowe)

Every year, tens of thousands of people — representing about a quarter of all U.S. cancers — are diagnosed with tumors that differ enough from frequently identified ones to be called rare. In determining whether to reimburse treatment for such ailments, insurers turn to Food and Drug Administration labels and expert guidelines.

But these rare afflictions often lack targeted, FDA-approved treatment options, even though in many cases, molecular tests offered by diagnostic companies and university labs can provide a strong suggestion of what will work.

“Insurance coverage routinely trails behind what genomic testing reveals about a patient’s cancer and what the science supports,” said Olivier Elemento, director of Weill Cornell Medicine’s Englander Institute for Precision Medicine.

Henderson’s neuro-oncologists, Jacob Mandel of the Baylor College of Medicine and Jessica Schulte of NYU Langone Health, decided to try Lynparza, also known by the generic name olaparib, in combination with chemotherapy. There wasn’t a wealth of evidence behind the drug but there was a “biologically reasonable” assumption it would help, Schulte said, because cells in tumors like Henderson’s have a flaw that drugs like Lynparza can target. Providers in several previous cases had seen brain cancers like Henderson’s respond well to the drug.

“In general, we try to base our treatment decisions on large patient studies” involving hundreds of patients, Schulte said. But large clinical trials will probably never be conducted for a cancer as rare as Henderson’s.

Schulte, who specializes in brain cancers in young adults, sees only a few of Henderson’s type each year, she said.

Mandel prescribed the drug on Jan. 16. Liviniti, Henderson’s pharmacy benefit manager, responded with a quick refusal on Jan. 30. Two weeks later, the company sent an explanation: “Lynparza is not approved for the diagnosis provided.” Out-of-pocket, the drug would cost about $8,700 per month, Lowe said. Liviniti did not respond to phone calls seeking comment.

Before his diagnosis, Henderson was a healthy, athletic young man with a big heart, faith in Jesus, and a tight group of friends, his mother said. At Evadale High School, north of Beaumont, Texas, Henderson played baseball and football and was homecoming king in 2022. After graduating, he worked at the local paper mill, spending his free time hunting, fishing, and exploring the woods on an all-terrain vehicle. He wanted to be a police officer, Lowe said.

Henderson was 20 on March 15, 2024, when his brother Gunner found him at the top of the stairs in the family home with his head in his hands. “He was in the post-seizure state,” Lowe said. “He couldn’t talk. Was crying. Trying to hug me. Could not communicate.”

At an emergency room in Beaumont, an MRI revealed a large tumor. He was transferred to Baylor St. Luke’s Medical Center in Houston and diagnosed with a form of brain cancer called diffuse hemispheric glioma (H3-G34 mutant).

Surgery a few days later cut out 90% of the tumor, but brain cancers are almost impossible to remove entirely, because of the delicacy of the tissue they’re embedded in, Schulte said.

After 16 months of radiation and chemotherapy, a September 2025 scan showed the cancer had spread to his spinal cord, a condition called leptomeningeal disease that usually proves fatal within a few months. Mandel contacted Schulte about a clinical trial she was leading. It consisted of 11 days of brutal craniospinal irradiation, which left Henderson exhausted. When it was over, the cancer was still there.

“The family was wonderful,” Schulte recalled. “They were trusting in their team, but they asked appropriate questions to make sure that we were thinking about Mason as a person.”

Coverage Refused

Lynparza, approved by the FDA in 2014 for ovarian cancer, works by interfering with tumor cells’ ability to multiply. After Liviniti, the pharmacy benefit manager, refused coverage for Henderson, his family turned to Jefferson County. Henderson’s stepfather, Jerry Lowe, flies helicopters for the county sheriff’s office.

The county, which had the final say on reimbursement because it pays claims directly for its employees’ family health coverage, also refused. When Henderson’s family appealed, the county review board authorized an independent medical reviewer to look at the case. The nonspecialist supported the board’s finding and recommended another drug, but Henderson’s doctors disagreed. The board didn’t respond to a request for comment.

AstraZeneca had also turned down the family’s request for a donation of the drug. By then it was March, six weeks after Lynparza was prescribed.

Cancers that start in the brain are unusual — only about 25,000 cases are diagnosed in the U.S. each year, compared with 320,000 breast cancers and 229,000 lung cancers. Only a few hundred people each year, mostly young adults, are diagnosed with Henderson’s type, according to Schulte.

Treatment options for diffuse hemispheric glioma are few; brain cancers in general are often excluded from clinical trials. They represent a relatively small market for a pharmaceutical company. Testing drugs against them is risky, because of the brain’s sensitivity, and difficult because the drug must pass through the tightly packed cell walls lining the blood vessels, known as the blood-brain barrier.

Patients like Henderson often struggle to get medications that are prescribed off-label based on recent scientific findings. (Tabitha Lowe)

Still, drugmakers are increasingly homing in on narrower and potentially more accurate drug targets as science reveals more of cancer’s remarkable molecular diversity.

Under guidance issued in 2022, the FDA has approved nine drugs to be used for patients whose tumors have specific mutations, regardless of the organ where the cancer first appeared. These “tissue agnostic” drugs are still a tiny minority, but as genome sequencing becomes more common — growing numbers of oncologists order it for patients — insurers will have to keep up, Weill Cornell’s Elemento said.

Several U.S. research groups are hosting clinical experiments known as “basket trials,” in which mostly late-stage cancer patients are put on drug combinations based on tumor genetics, rather than the organ of origin.

The American Society of Clinical Oncology has recruited more than 3,000 patients into one of the biggest efforts, the Targeting Agent and Profiling Utilization Registry, or TAPUR, which began in 2016. It provides off-label treatments at no cost to advanced-staged cancer patients at more than 270 U.S. oncology practices.

About half the participants have benefited, and in rare cases the treatment kept patients alive for a year or more or seemingly cured them, said Richard Schilsky, the program’s founder and its principal investigator until recently. The results have led to changes in several treatment guidelines, he said, and a change in guidelines “usually is sufficient to create a pathway to reimbursement by insurance.”

Research has uncovered “quite a few” cases in which Lynparza was effective against a variety of tumor types, Schilsky said. But like many clinical trials, TAPUR excludes patients with primary brain tumors — like Henderson’s.

Oncologists disagree on how broadly genetics discoveries will transform cancer diagnosis. Cancers are currently identified as breast, colon, lung, etc., because those are the cells that pathologists see when diagnosing a tumor, said Razelle Kurzrock, the associate director of clinical research at the Medical College of Wisconsin Cancer Center.

But that’s a “mistake of history,” she said. “You’re making the diagnosis based on the pathologist’s view of the surface of the cell rather than what’s actually driving the cancer.”

A Dutch father and son invented the first light microscope to peer at cells around 1590. The Human Genome Project finished in 2003. If genome-enabled next-generation sequencing, now used for molecular tumor scans, had come before the light microscope, “no one would look at organ of origin,” she said.

Kurzrock leads I-PREDICT, a clinical trial in which every patient gets individualized cancer therapy based on DNA, RNA, and protein patterns in their tumor. Instead of getting drug combination A or B, “in our trial everyone gets a different set of drugs,” she said. Physicians can instead use standard therapies, she said, and their patients are the study controls.

Other oncologists see limitations to purely genetic diagnosis. Certain cancer centers advertise by saying, “‘We’ll sequence your tumor better than anyone else, and therefore you’ll live longer and do better if you come here,’” said Kathy Miller, a professor of oncology at Indiana University. “But the evidence doesn’t support those claims right now.”

‘I Wouldn’t Give Up’

In Henderson’s case, the problem was never diagnosis; Baylor clinicians identified his cancer type quickly. But its rarity and location made the tumor hard to fight, and the lack of financial help made it even harder.

On March 8, Tabitha Lowe went on Facebook, LinkedIn, and Instagram with photos of her son and descriptions of his plight. She tagged AstraZeneca, Liviniti, and the county board that had denied his reimbursement. “Rare cancer patients are denied treatment simply because their cancers are rare,” she wrote in one of the posts, which were shared hundreds of times.

“I hated to take this route, but when it comes to my kids there’s nothing I won’t do,” she told KFF Health News. “I’ve cried, I’ve stressed out, but I wouldn’t give up.”

Tabitha Lowe took to Facebook to try to get her son Mason Henderson access to the brain cancer treatment his doctors sought for him. (Tabitha Lowe)

The next day, AstraZeneca’s patient assistance program, which had turned down her request for the drug two weeks earlier, emailed her with good news: A bottle of 60 Lynparza pills had been shipped to her pharmacy. Company spokesperson Tara Parsell said patient confidentiality prevented her from commenting on its actions.

Lowe’s six-week battle had paid off. Now, “it’s in God’s hands,” she said in an April interview. By mid-April, however, Henderson could no longer walk. Then came issues with his speech. “It all happened so fast.”

On May 4, in the family’s living room, where his bed had been moved, Henderson died, after taking the drug for nearly two months. Hundreds attended his memorial service; their cars made a procession seven minutes long.

The family has created a college scholarship in Henderson’s name for graduates of the local high school. An online campaign and bass fishing tournament had raised nearly $24,000 by September. Willie Robertson of Duck Dynasty, professional pickleballer Tyson McGuffin, and pro fisherman Hank Parker donated items for a raffle. Country singer Mark Chestnutt sent two signed guitars, Lowe said.

“Faster treatment would have been better,” although it’s hard to know whether it would have extended Henderson’s life, NYU’s Schulte said.

“I will always wonder,” Lowe said in a phone interview this summer. “Cancer don’t pause while the paperwork’s in progress.”

“There’s something especially painful thinking about how much time I spent fighting healthcare instead of being with Mason,” she added. “I was forced to become a PBM, insurer, research expert, all while trying to be his mother.”

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

BOISE, Idaho — Joshua and Ashley Durham run a family medicine practice, and for the first time in their lives, they have no health insurance.

When the Durhams began their practice at the end of 2023 — he as a primary care physician and she as a pharmacist who handles the billing — the couple bought coverage for themselves and their two kids on the Affordable Care Act marketplace. But they said their monthly premiums for a similar health plan for this year rose several hundred dollars to nearly $1,600.

They decided to pay out-of-pocket for their medical expenses instead, leaning on $50,000 they had set aside in a health savings account over several years.

“It’s nerve-racking,” said Joshua Durham, 47. “It just takes, you know, one little accident, and then you got a big fat bill.”

The healthcare industry traditionally has more of its workforce on medical insurance than many other fields. Nationwide, 7% of all healthcare workers were uninsured in 2024, compared with 11% of all adults under 65, according to a KFF analysis of the most recent American Community Survey data. And doctors were especially unlikely to forgo health insurance, with just 2% uninsured.

But even healthcare workers are feeling the pinch as health insurance costs rise each year, with employers expecting that costs will jump an additional 8.2% for 2027.

The Republican-led Congress also opted last year not to renew Affordable Care Act marketplace credits enacted during the covid pandemic. While subsidies remain in place for people with low incomes, the pandemic-era credits helped reduce many consumers’ premium payments, especially those working in small businesses such as independent medical practices. Nearly half of marketplace enrollees worked for small businesses or were self-employed in 2024; some of the most common occupations included chiropractic care and dentistry.

Jack Dillon, executive director of the Association for Independent Medicine, which represents 4,000 physician-led practices, said premium increases have become untenable for small businesses, whether employers seek coverage through the marketplace or directly from insurers.

“The cost has become so astronomical,” Dillon said. “You’re looking at it and saying, ‘What’s the value?’”

As health insurance continues to become less affordable, Dillon said, more healthcare employers may seek alternatives to their standard coverage, such as providing higher hourly wages or providing only minimal plans.

The number of people without insurance in the U.S. is expected to increase by roughly 15 million over 10 years because of the expiration of the expanded ACA subsidies and $1.1 trillion in estimated cuts resulting from President Donald Trump’s signature One Big Beautiful Bill Act, according to the Congressional Budget Office.

Healthier people are the most likely to opt out of insurance. That leaves insurance covering a smaller pool of people who tend to be sicker and need more expensive care. So insurers raise prices to cover the remaining enrollees, which fuels even higher premium costs.

‘Healthcare Is a Business’

Samantha LeGault, a nurse practitioner at a health clinic in Boise, said her employer-offered plan’s premium payment rose from $700 to $1,500 a month this year to insure herself, her husband, and four of their kids. LeGault has Crohn’s disease and two of their daughters also have medical conditions, so she said her family has no choice but to continue to pay for that health coverage.

But she decided to skip dental insurance to save money, and she prioritizes dental visits for her children over herself.

She had already struggled to set aside retirement savings and had switched her children from a private school they liked to public school to cut down on costs. Then the new health insurance costs tightened her budget even more. She estimated that about one-fifth of her income now goes toward her monthly premium payments.

“I know how the clinics work, that I am an expensive patient,” LeGault said. “At the end of the day, healthcare is a business in the United States.”

Samantha LeGault, a nurse practitioner for a health clinic in Boise, says her medical insurance premium costs rose from $700 to $1,500 a month this year to cover her, her husband, and four of their kids. She has Crohn’s disease, and two of her daughters also have medical conditions. She continues to pay for health coverage but opted to skip dental insurance to reduce their monthly expenses. (Hayat Norimine/KFF Health News)

The Durhams have three other employees in their practice. Two of them receive health insurance through their spouses, Ashley Durham said. The Durhams said they pay $420 monthly toward their physician assistant’s premiums.

As a primary care physician, Joshua Durham said he doesn’t need regular doctor visits, because he can diagnose and treat himself — and, if needed, the rest of his family, though he acknowledged that’s frowned upon. The American Medical Association’s code of ethics generally discourages doctors from treating themselves or relatives but makes exceptions for emergency situations or short-term, minor problems. Ashley Durham said she’s filled prescriptions for her family.

Arthur Caplan, a bioethicist and professor emeritus at New York University’s Grossman School of Medicine, said that as more people are “turning toward relatives because they can’t access or easily see a regular doctor,” it may make sense to revisit that aspect of the code of ethics.

Out-of-Pocket Expenses

Healthcare workers with less advanced medical certifications than the Durhams often don’t have the option of treating themselves or family members — or don’t have savings to fall back on for healthcare expenses. And many healthcare professionals, such as Jill Kordick, a 64-year-old retired healthcare executive in Norwalk, Iowa, aren’t willing to go without the safety net of insurance.

In her work, Kordick saw hospitalizations become financially devastating for patients, so she said she would never opt out of health insurance — even for just the 16 months before she’d become eligible for Medicare at age 65.

Last year, she qualified for the enhanced Affordable Care Act tax credits, allowing her to pay $75 a month for health coverage. Her premiums rose to $800 a month this year when those subsidies expired.

Because she has a $10,000 deductible, she put off going to the doctor for weeks when she had a sinus infection this year, until it ultimately evolved into an ear infection. She said she regularly rethinks, and sometimes returns, nonessential groceries in her shopping cart. And she keeps her house’s thermostat at 80 degrees in the summer to cut down on air conditioning costs.

Kordick said healthcare is a universal struggle in this country, regardless of how familiar patients are with the industry. “It’s disheartening that it’s as broken and fragmented as it is,” she said.

The Durhams have seen the impact of unaffordable healthcare on their patients. They said they try to lend some leeway to patients when they can — a luxury they have, operating their own practice. In one case, Ashley Durham said, she wrote off $1,160 in bills for a single father whose son didn’t have health insurance rather than send their bills to a collection agency.

“It’s hard, because as a human I want to help them out,” she said. “At the same time, we need revenue for our office.”

Joshua Durham is more nervous about going uninsured than his wife. As a child, he witnessed his parents struggling to pay medical bills for their family of nine in south-central Idaho. Durham recalled that his dad, who was a carpenter, helped build a surgeon’s house to pay for an operation.

Today, Durham also sometimes exchanges work for care. He said he gets free eye exams from an uninsured optometrist and offers him free primary care.

He worries about a worst-case scenario: a car crash, a sports injury, a serious diagnosis.

“Do I have pancreatic cancer today?” Durham said wryly.

So far, the couple has paid around $9,000 total for expenses out of their health savings account this year, including physical therapy to help with the thoracic outlet syndrome that affects Durham’s neck and shoulder, mental health appointments, and contact lenses. The expenses were higher than the Durhams anticipated. But it was still less than what their monthly premiums would have cost them.

Their decision has paid off, Joshua Durham said. At least for now.

The Durhams used the Affordable Care Act marketplace for health insurance for their family of four last year. This year, they chose to pay out-of-pocket for care instead when the cost of their premium payments jumped. (Hayat Norimine/KFF Health News)

Are you struggling to afford your health insurance? Have you decided to forgo coverage? Click here to contact KFF Health News and share your story.

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

If you or someone you know may be experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.”

Paul Nestadt is about as steeped in suicide prevention as a person can be.

He treats suicidal patients as a psychiatrist, has co-authored scores of research papers on how and why people kill themselves, and teaches graduate courses on the subject.

But he’ll be the first to admit: “I can’t tell you which of my patients is likely to die by suicide in the next six months.”

Almost nobody can.

Research shows predictions of who will be suicidal are only slightly better than a coin toss. And they haven’t improved over 50 years.

But that doesn’t make Nestadt hopeless. Instead, it pushes him to pursue interventions that don’t require pinpointing people at risk.

Chief among them: making it harder for people to carry out the act of killing themselves.

“Instead of asking every doctor to figure out which patient will die by suicide and locking that patient up, it might be that we need to make sure there aren’t loaded guns available,” Nestadt said.

In an ongoing series, KFF Health News is examining approaches to suicide prevention that expand beyond providing people at risk with medication and therapy. Although those are lifesaving measures, many clinicians, researchers, and people who have lost loved ones to suicide agree that more is needed. The challenge is that when it comes to firearms, broad policy approaches quickly become constitutionally complicated and politically polarizing.

Research shows that limiting access to lethal means is one of the most promising approaches to save lives. It can involve erecting barriers on buildings and bridges to prevent people from jumping, as well as decreasing the number of pills someone can buy or be prescribed at once.

And reducing access to guns.

“That’s the one that will save the most lives,” said Nestadt, medical director at the Johns Hopkins Center for Suicide Prevention.

It may also be the most difficult to achieve.

More than 28,000 people killed themselves with a gun last year, representing more than half of all suicide deaths in the U.S., according to preliminary federal data. Even as overall suicide rates have dipped recently, gun suicides have hit record highs for five years in a row.

Most Gun Deaths in the U.S. Are Suicides

From 2021 to 2025, suicide deaths by gun hit record highs each year, even as homicides by gun decreased.

Source: <a href="https://wonder.cdc.gov/&quot; target="_blank" style="color:#0071ce">CDC WONDER</a> <br> Note: 2025 data is provisional. The following ICD-10 codes identify firearm death types: X93-95 (homicide), X72-X74 (suicide), W32-34, Y22-24, and Y35.0 (other, which includes accident, legal intervention, and undetermined). <br> Credit: Aneri Pattani/KFF Health News

Many of the deaths are among middle-aged white men and veterans, two groups that have had high suicide rates for years. But more recently, gun suicides have risen among women and among some Black and Latino men. Researchers say a surge in first-time gun buyers during the covid pandemic underscores the need for prevention efforts that can be applied widely.

Some people assume it’s futile to restrict access to bridges, pills, or guns. The thinking goes: Those who want to kill themselves will simply find another way.

But research refutes that. Creating barriers for one method doesn’t typically push people to another.

Suicide risk can surge quickly, with people spending less than an hour or even five minutes between deciding to die and acting on it. Anything that delays such action — for example, having to unlock a safe to access a gun — gives them time to reconsider or for someone to intervene.

A Sharp Rise in Gun Suicides Among Black Women

White women had the highest rates of gun suicides by women in 2015 and 2024, but among women of other races and ethnicities, the increase was faster and steeper over that time.

Source: <a href="https://publichealth.jhu.edu/sites/default/files/2026-07/2024-CGVS-gun-violence-in-the-united-states.pdf?nvep=&hmac=&emci=8288e977-1e8c-f111-b337-000d3a1558ce&emdi=ea000000-0000-0000-0000-000000000001&ceid=&quot; style="color:#0071ce">The Firearm Mortality Epidemic: Examining the U.S. Data From 2024, Johns Hopkins Center for Gun Violence Solutions</a> <br> Note: Rates represent gun suicide deaths per 100,000 people. <br> Credit: Aneri Pattani/KFF Health News

However, in the U.S., discussion around guns — even in the context of a traditionally bipartisan topic such as suicide prevention — is a political lightning rod. Mentions of background checks, waiting periods, or red flag laws often send people running to their respective corners. Gun owners and the firearm industry say many of the policies suicide prevention advocates seek threaten their Second Amendment rights, and many policymakers see the topic as a nonstarter.

President Donald Trump has been a strong ally of gun owners. His administration has rolled back dozens of firearms regulations and rescinded a previous surgeon general’s warning that called gun violence a public health crisis. It has also revoked grants focused on addressing community gun violence and cut federal staff working on the issue.

The White House did not respond to specific questions about how these actions may affect the nation’s high rate of gun suicides or what it’s doing to prevent such deaths. But spokesperson Lauren Bis said in a statement that “President Trump is committed to Making America Healthy Again and that includes mental health.” She pointed to the administration’s support for developing psychedelic treatments for mental illness and an announcement of $52.5 million in grants for veteran suicide prevention.

The Limits of Red Flag Laws

One gun policy that has gained some traction, despite pushback, is the extreme risk protection order, more commonly known as a red flag law.

Adopted in some form in 22 states and the District of Columbia, these laws allow judges to temporarily remove a person’s guns when evidence suggests they pose a danger to themself or others.

Although such laws are often passed in the wake of mass shootings, research suggests they’re more effective at preventing suicide.

Still, they require identifying someone at risk.

Someone like Dorothy Paugh’s dad.

In 1965, when Paugh was a young girl, her dad lost his job. He was distressed, not knowing how he’d support his wife and five children, Paugh said. He reviewed his life insurance policy, told his wife where he kept important documents, and bought a handgun.

“If my mom had been able to get an extreme risk protection order or if Dad’s best friend had asked to hold his gun for a while, maybe my dad would not have shot himself. He might have lived,” Paugh said.

Decades later, Paugh advocated for a red flag law in Maryland and sat in the legislative gallery when the measure was passed.

She believes the law is saving lives.

Studies across other states show that for every 10 to 20 guns removed under red flag laws, one suicide is averted, saving a life.

But Paugh also recognizes the law’s limitations.

“It wouldn’t have saved my son,” she said.

Dorothy Paugh’s father died by suicide in 1965. She lost her 25-year-old son, Peter, shown in the photo, to suicide in 2012. Both men shot themselves. Paugh has since become an advocate for gun policies that have been shown to reduce suicide deaths, such as red flag laws and mandatory waiting periods before completing a gun purchase. (C. Allen Paugh)

Her 25-year-old son, Peter, fatally shot himself in 2012. He’d recently bought a house with his girlfriend and hosted a birthday celebration for his brother. He’d purchased a gift ahead of Mother’s Day — five novels by Charles Dickens, Paugh’s favorite author — that Paugh received after his death.

Unlike in her father’s case, Paugh said, no one saw warning signs for Peter. “I did not know that my son was suicidal. I didn’t have a clue,” she said. Even if a red flag law existed then, she wouldn’t have thought to use it.

The people most vulnerable to firearm suicide usually aren’t identified as such by family members or clinicians, said Michael Anestis, a clinical psychologist and the executive director of the New Jersey Gun Violence Research Center.

Studies have shown that among people who die by suicide, those who used guns were less likely to have sought mental health care in the past. And most veterans and service members who die by gun suicide never tell anyone about their suicidal thoughts in the months leading to their death.

That’s why red flag laws are just a first step in suicide prevention, Anestis said. They target specific individuals at high risk — the aspect that makes such laws more politically palatable — but they do not apply to the many other people who are quietly suicidal.

Paugh’s son, Peter, fatally shot himself in 2012. Paugh says she didn’t see warning signs that he was suicidal. Peter is pictured here hiking the Appalachian Trail in 2009. (Dorothy Paugh)

Lessons From Road Safety

Nestadt, the Johns Hopkins psychiatrist, said the nation needs to approach suicide prevention the way it approaches car accidents.

“You’re not trying to figure out who’s at risk of an accident” by testing people’s reaction time or cataloging who gets into fender benders, Nestadt said.

Instead, governments implemented speed limits, passed seat belt laws, and required auto manufacturers to install air bags and shatter-resistant windshields. The crash death rate declined significantly.

Applying a similar strategy to suicide might involve requiring permits and background checks to buy a gun, as well as instituting waiting periods before completing the purchase.

One study found that enacting a permit-to-purchase law in Connecticut was associated with a roughly 15% decrease in gun suicide rates, while repealing such a law in Missouri was linked to a 16% increase in firearm suicide rates.

Most Suicides in America Involve a Gun

Suicide deaths by gun have been increasing for several years, even as suicides by suffocation — the second most common method — have been decreasing.

Source: <a href="https://wonder.cdc.gov/mcd-icd10-provisional.html&quot; target="_blank" style="color:#0071ce">CDC WONDER</a> <br> Note: 2025 data is provisional. "All other methods combined" includes cut/pierce, drowning, fall, fire/flame, other land transport, other, and unspecified. <br> Credit: Aneri Pattani/KFF Health News

About three dozen states have enacted laws requiring owners to lock up their guns in homes where children live, a practice shown to reduce youth suicides. That’s an issue of particular importance, with gun suicide rates increasing 245% among Black youths and 98% among Latino youths since 2014.

Anestis said laws requiring permits and safe storage can also reduce homicides and other gun injuries.

Those types of violence not only hurt people directly but also increase their risk of suicide. Research suggests people who are exposed to gun violence in their community experience trauma and become habituated to the idea of injury or death. That “double whammy” makes them more likely to kill themselves, Anestis said.

Responsibility, Rights, and Saving Lives

Gun owners and firearm trade associations generally oppose universal measures, such as requiring permits and waiting periods. They prefer education campaigns that teach people how to recognize warning signs, talk about mental health, and safely store guns — initiatives that place responsibility on individuals.

The National Shooting Sports Foundation, which represents the firearms industry, has partnered with the American Foundation for Suicide Prevention to create flyers and brochures to be posted in gun shops.

“Our purpose is to provide educational materials to the firearm-owning community on how to help prevent suicide and save lives,” Bill Brassard, the NSSF’s senior director of suicide prevention initiatives, said in a statement.

The National Rifle Association said policies focused on guns miss deeper concerns that make someone suicidal, such as mental illness.

“Suicide is a serious issue that deserves serious solutions focused on the underlying causes, not on political efforts to restrict the rights of law-abiding Americans,” NRA spokesperson Justin Davis said in a statement. “A truly dangerous individual needs to be incapacitated, not just deprived of one particular means of harm.”

Some initiatives have managed to bring together unlikely bedfellows — gun store owners, public health experts, and even libraries — to provide free locks to secure firearms at home, identify locations that will temporarily store someone’s guns while they’re in crisis, and educate people on how to avoid selling guns to someone who is suicidal.

Those efforts give Paugh hope and fuel her passion to continue advocating for better mental health care, open conversations about suicide, and policies that decrease access to guns.

“It’s not a cure-all,” Paugh said of those policies. But “it does save lives.”

Having lost a parent and a child, she knows how valuable that can be.

“If you’re that one person or that person’s family, it’s all the difference in the world,” she said.

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

When the FDA was deciding whether to approve the drug Tavneos several years ago to treat a set of rare autoimmune diseases, agency experts argued that would be a mistake, according to FDA records.

One problem cited: The manufacturer had provided only “limited safety data.”

As it often does, the FDA in 2021 approved the drug with a proviso: It required the manufacturer to conduct an additional years-long safety study once the drug was on the market.

Today, like many similar “postmarket” studies mandated by the FDA, that additional study is delayed, according to a federal database. As of last fall, only 21 of the planned 300 patients had been enrolled, the FDA said in an April letter and regulatory posting.

Meanwhile, the FDA has identified dozens of cases of liver damage “possibly” or “probably causally associated” with the drug. That was one of the potential side effects the postmarket study was meant to evaluate.

Tavneos illustrates the perils of the FDA’s approach to many drugs and medical devices — and the frequent lapses in follow-through.

A KFF Health News analysis of Food and Drug Administration data found hundreds of postmarket studies listed as delayed. In some cases, the work was delayed by more than a decade or the manufacturer was still developing a plan for the study.

As a result of delays, patients, doctors, and others could be left in a fog about the risks and benefits of the drugs or devices, even as they stake their money, their health, or their lives on the products.

Postmarket study requirements “have often proven toothless,” said cardiologist Sanket Dhruva, an associate professor of medicine at the University of California-San Francisco who has published related research.

The FDA’s reliance on postmarket studies reflects a balancing act.

Making new treatments available faster can save or improve lives, especially when patients with grim prognoses and no good options have little to lose. The full risks and benefits may be revealed only over the long term, and when therapies are used by far more people than even large clinical trials enroll.

But relying on post-approval studies to resolve questions risks exposing patients to products that do more harm than good. Whoever is paying the bills — patients, insurance companies, employers, or government health programs such as Medicare and Medicaid — can end up wasting money and rewarding manufacturers for useless or risky products.

“Doctors rely on this evidence, patients rely on this evidence, and if that evidence is not there, it’s going to lead to a lot of uncertainty,” Dhruva said.

Trump administration policy changes designed to hasten drugs through FDA review could leave more riding on postmarket studies, medical researchers say.

For example, in February, FDA leaders announced that “the default requirement” for agency approvals will be one clinical trial instead of two.

Reducing pre-approval testing “will inevitably put a lot of pressure on the post-approval system,” said Aaron Kesselheim, a professor at Harvard Medical School who has analyzed postmarket studies.

FDA officials said the new policy would “substantially reduce costs” for manufacturers and “speed drugs to market.” Writing in The New England Journal of Medicine, they denied the change would compromise safety or efficacy, saying that “erroneous conclusions may be reached even with two, three, or four studies.”

In response to questions for this article, a spokesperson for the Department of Health and Human Services, which includes the FDA, said postmarket studies can experience delays for legitimate reasons. “Assessing the significance of any delay requires a case-specific review,” said the spokesperson, Emily Hilliard.

The fact that a study is delayed “should not be treated as evidence that a product has an unresolved safety or effectiveness issue,” Hilliard said.

Amgen, the company that makes Tavneos, is still working on the postmarket research the FDA mandated, company spokesperson Alison Chartan said, adding, “We remain committed to completing this important study.”

Amgen’s headquarters in Thousand Oaks, California, in May 2023. (Mario Tama/Getty Images)

Behind Schedule

An FDA database downloaded by KFF Health News in August tracks the progress of postmarket studies that makers of drugs or biologics — such as vaccines and gene therapies — were required to perform or promised to perform.

The database showed almost 600 were running behind schedule.

Of those, more than 250 originally had final reports due before July 31, 2026 — the date that, according to an FDA webpage, the database last had been updated.

About a third of ongoing studies were listed as delayed.

In some cases, the FDA has granted extensions. In others, it has denied them. And in rare instances, the products were discontinued before the studies ran their course.

Postmarket studies can involve clinical trials or other analyses of patient data. They can look at safety or efficacy. A product can be the subject of more than one postmarket study.

The nearly 600 delayed studies involved almost 350 products, KFF Health News found.

The FDA has defined delayed as behind the original schedule. That can mean off track or overdue.

As of August, other FDA databases tracking medical devices listed dozens of postmarket studies as behind schedule.

Products included:

The CustomFlex Artificial Iris, a prosthesis implanted in the eye in place of damaged, defective, or congenitally missing irises. The protocol for a study in children was accepted in 2019, the database said. The study was meant to follow patients for five years. According to an FDA page downloaded in August, zero patients were enrolled.

Barbara Fant of Clinical Research Consultants, to whom the FDA’s 2018 letter approving the product was addressed, said the rarity of an eye disease called aniridia poses challenges for post-approval studies. The German manufacturer, the U.S. distributor, and Clinical Research Consultants are working with the FDA to identify alternative ways to fulfill the postmarket requirements, Fant said.

“Confirming the long-term safety of the device remains a top priority for both the study team and FDA,” Fant said.

Paxlovid, a treatment for covid. A study to assess its safety in pregnant women was originally to be completed by the end of 2024, the FDA database said. “The trial completion and final report milestones were missed,” the database said.

Pfizer, the manufacturer, is working with the FDA and remains committed to “submitting results as soon as practicable,” Pfizer spokesperson Jerica Pitts said.

The Scandinavian Total Ankle Replacement system. The device and the original protocol for the clinical trial were approved in 2009. The study was meant to include a minimum of 500 subjects, the database said, but the actual number enrolled was 142. Almost half those patients had one or more adverse events, with dozens of “reoperations,” “revisions,” or “removals,” the database said.

Rachel Colloff and Cristina Pasquino — spokespeople for Enovis, which markets STAR Ankle — did not respond to multiple inquiries. Jenny Braga, a spokesperson for Stryker, which previously sold the product, did not answer questions about the postmarket study.

Oxaydo (originally named Oxecta), a form of the potentially addictive opioid painkiller oxycodone touted as designed to deter abuse. When the FDA approved it in 2011, it required the manufacturer, part of Pfizer, to conduct a postmarket study to assess whether it reduces “misuse and abuse, and their consequences: overdose, death and addiction.” The final report was originally scheduled to be submitted in 2016.

The FDA database listing the study as delayed said the agency “issued a failure to respond letter” in 2022.

Today the issue may be all but moot.  

Control of the product passed from company to company over the years until 2023, when Acura Pharmaceuticals said in a Securities and Exchange Commission filing that patents on Oxaydo would begin expiring that year and it didn’t intend to continue marketing the drug.

According to another FDA database, Oxaydo has been discontinued.

The FDA has enforcement powers and uses them “where appropriate,” HHS’ Hilliard said. She did not provide requested details, and she did not answer questions about the studies listed above.

Delay Can Pay

For manufacturers, delay can pay, Harvard’s Kesselheim said. While postmarket studies are ongoing, companies can continue to sell the products.

“Medicare and Medicaid spent more than $18 billion from 2018 to 2021 for accelerated approval drugs with incomplete confirmatory trials past their original planned completion dates,” the HHS Office of Inspector General estimated in 2022.

The FDA can demand postmarket studies for a variety of reasons, including to address concerns that arise after a product has been approved. Some look at uses not covered by the original approval, and some are meant to shed light on serious risks that are already known.

In April, when it approved Foundayo, a weight loss drug made by Eli Lilly, the FDA required the company to conduct additional research to assess a variety of concerns, including “retained gastric contents,” “major adverse cardiovascular events,” and “drug-induced liver injury,” as well as effects of exposure during pregnancy, such as “major congenital malformations,” “spontaneous abortions,” and “stillbirths.”

The FDA said it approved the drug under the new Commissioner’s National Priority Voucher program, intended for products that “address critical national health priorities.” The program strives for an “ultra-fast” review, the FDA has said — one to two months, instead of six months or more with other expedited pathways.

“Postmarketing requirements and enhanced safety monitoring are a routine part of the FDA’s approach to evaluating newly approved medicines,” Eli Lilly spokesperson Kristiane Silva Bello said, “including ongoing monitoring in areas identified during clinical development.”

‘False Hope’

The FDA waded into a world of uncertainty in 2016 when it granted accelerated approval to a drug for Duchenne muscular dystrophy, a degenerative disease that primarily affects boys, disabling them at a young age and ultimately killing them.

Agency scientists had found that the drug, Exondys 51, was unproven and argued against greenlighting it.

Ellis Unger, then a senior drug evaluation official at the FDA, wrote in an internal memo that “thousands of patients and their families would be given false hope in exchange for hardship and risk.”

The manufacturer, Sarepta Therapeutics, conceded the uncertainty. “A clinical benefit of EXONDYS 51 has not been established,” it said when the drug, also known by the generic name eteplirsen, was approved.

The drug, the first FDA-approved treatment for Duchenne muscular dystrophy, targeted a subset of patients with the disease.

The FDA required Sarepta to conduct further studies and warned that it could withdraw approval if postmarket trials failed to verify a clinical benefit or were “not conducted with due diligence.”

Unger issued a warning of his own: “FDA has not succeeded in withdrawing the marketing of a single drug for lack of verification of clinical benefit following accelerated approval. The reality is that if eteplirsen is given accelerated approval, it is highly likely to remain on the market indefinitely, irrespective of whether or not efficacy is verified.”

Sarepta was originally required to submit a final report on a postmarket study by a May 2021 deadline, according to an FDA database and a 2016 FDA letter to the company.

Almost a decade after the drug was approved, and more than five years after that deadline, the study was listed in an FDA database as delayed.

“The final report milestone was missed, because the sponsor requested milestone extensions due to study delays,”  the database said.

Meanwhile, in 2022 the website Pharmaceutical Technology ranked Exondys 51 as the second-most expensive drug in the U.S., at an annual cost of $750,000 to $1.5 million.

Last year, the drug generated $538 million in sales for Sarepta, according to a company presentation to investors.

Sarepta found it difficult to recruit patients for the postmarket clinical trial, company spokesperson Tracy Sorrentino said. The target population is small, patients were hesitant to enroll, and Sarepta was competing with other clinical trials for participants, Sorrentino said.

The study has been fully enrolled since 2023, Sorrentino said, and the company plans to provide an initial look at the data late this year.

‘Manipulated’

Amgen is the maker of the drug Tavneos. (Hannah Yoon/Bloomberg via Getty Images)

Amgen has cited similar challenges, even as Tavneos generated $459 million in global sales last year.

When an approved treatment is available, patients may be reluctant to enroll in a study in which they could be given a placebo, Amgen’s Chartan said.

The clinical trial was originally supposed to be done by the end of 2030. As of July 24, just 49 patients had been enrolled, Chartan said.

The FDA has said the study was to include 300 patients, and each patient enrolled must be followed for five years, said Hilliard, the HHS spokesperson.

Tavneos was approved to treat severe cases of a group of diseases — known by the shorthand ANCA-associated vasculitis — in which, as the Cleveland Clinic explains, the immune system inflicts potentially fatal damage on blood vessels and organs. 

“As of January 2026, estimated real-world exposure” to Tavneos “exceeds 25,000 patient-years globally, consisting of over 6,500 in the United States and 19,000 abroad,” Amgen has said. (For context, one patient taking a drug for five years would amount to five “patient-years.”)

A clinical trial sponsored by ChemoCentryx to secure approval of Tavneos failed to prove it was effective, the FDA now alleges. Instead of disclosing that outcome to the FDA, company personnel “manipulated” the results, the FDA alleged in an April letter to Amgen.

Amgen, the parent company of ChemoCentryx, has denied the results were manipulated and has said the data “remain valid.”

Nonetheless, the European Union recently revoked its approval of Tavneos.

The FDA is trying to pull Tavneos from the market, and Amgen is fighting that effort.

The company has a lot riding on the outcome. Tavneos can cost more than $220,000 per year, according to the drug discount website GoodRx, and when Amgen acquired ChemoCentryx in 2022 for $3.7 billion, Tavneos was the only drug ChemoCentryx had brought to market.

In a June letter to the FDA, Amgen said the benefits of Tavneos outweigh the risks.

The FDA disagrees.

The FDA “can no longer conclude that there is, or has ever been, a valid demonstration of substantial evidence of effectiveness for TAVNEOS,” the agency wrote.

Citing 76 cases of DILI — drug-induced liver injury — the agency said it was “increasingly concerned about the safety profile of TAVNEOS.” Without proof of effectiveness, at least for its approved use, “the drug’s benefits cannot outweigh its known risks,” the FDA wrote.

Data reporter Maia Rosenfeld contributed to this report.

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

The Host Julie Rovner KFF Health News @jrovner @julierovner.bsky.social Read Julie's stories. Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, "What the Health?" A noted expert on health policy issues, Julie is the author of the critically praised reference book "Health Care Politics and Policy A to Z," now in its third edition.

Reports from a top artificial intelligence company that it stopped several attempted uses of its product that could assist in manufacturing a bioweapon caught the attention of lawmakers in Washington this week. But it is still unclear whether or when Congress will act to regulate the fast-moving industry — and the House has left town until after Election Day.

Meanwhile, with many voters expressing anger over the rising cost of healthcare, President Donald Trump is proposing to send $500 checks to some people enrolled in Affordable Care Act insurance plans before the election. But even if those checks materialize, in most cases they will be smaller than the increases many policyholders have already seen.

This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg News, Tami Luhby of CNN, and Alice Miranda Ollstein of Politico.

Panelists Anna Edney Bloomberg News @annaedney @annaedney.bsky.social Read Anna's stories. Tami Luhby CNN @Luhby Read Tami's stories. Alice Miranda Ollstein Politico @AliceOllstein @alicemiranda.bsky.social Read Alice's stories.

Among the takeaways from this week’s episode:

• Anxieties about AI reached a fever pitch this week, with a few leading developers calling to slow the pace of innovation amid troubling reports about AI’s progress and use, including reported attempts to misuse AI for biological warfare. Meanwhile, the Trump administration is pressing to incorporate AI into healthcare.
• Federal lawmakers are exploring changes to the independent arbitration system created by the No Surprises Act, which took effect in 2022. While the law has cut down on patient exposure to surprise out-of-network medical bills in emergencies, the system has resulted in far larger paydays than anticipated for many doctors — which, in turn, has prompted a sizable increase in coverage costs, including for employers.
• Some cities and states are suing to block implementation of the latest public charge rules from the Trump administration, arguing they could have a chilling effect for some who are entitled to public benefits, such as the eligible children of immigrants. They allege that could leave cities and states on the hook and harm local economies.
• Abortion opponents are claiming victory as the Environmental Protection Agency moves to test water for remnants of abortion pills, among other chemicals and drugs. California’s attorney general is wrapping up a lawsuit against two nonprofits offering what they describe as abortion pill reversals, despite a lack of evidence the method works or is safe. And the family of a Texas woman who died after being denied an abortion is suing her doctors and the state’s attorney general, Ken Paxton.

Also this week, Rovner interviews Sabrina Corlette of the Georgetown University Center for Health Insurance Reforms, discussing some potential short-term fixes to the nation’s health system.

Plus, for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too: 

Julie Rovner: KJZZ Phoenix’s “Data Shows DES Failed To Complete Most SNAP Eligibility Interviews, Resulting in Massive Cuts,” by Camryn Sanchez.

Tami Luhby: The Washington Post’s “What ‘Ferritin Face’ Means — And How To Tell If You May Be Iron-Deficient,” by Erica Sloan.  

Anna Edney: Bloomberg News’ “Patients Who Fight Health Insurance Denials Often Win,” by John Tozzi, Tanaz Meghjani, and Ike Swetlitz.

Alice Miranda Ollstein: KFF Health News’ “Indigenous Groups Are Exempt From Medicaid Work Rules, but Native Hawaiians Aren’t,” by Ashley Mizuo.

Also mentioned in this week’s podcast:

• Science’s “‘Chilling’ Warning or Overreaction? AI Bioweapons Report Divides Experts,” by Jocelyn Kaiser.
• The New York Times’ “U.S. Health Officials Move Quickly To Deploy Medical A.I. Despite Concerns,” by Christina Jewett.
• Roll Call’s “Surprise Billing Dispute Process In ‘Crisis,’ Groups Say,” by Ariel Cohen.
• KFF Health News’ “A Generation of Kids Suffer as Trump Destabilizes Immigrant Families,” by Claudia Boyd-Barrett.
• Politico’s “Abortion Opponents Claim ‘Tremendous Victory’ as EPA Tests Water for Abortion Pills,” by Miranda Willson, Alice Miranda Ollstein, Ariel Wittenberg.
• Politico’s “Free Speech or False Advertising? California Judge To Rule on ‘Abortion Pill Reversal’ Claims,” by Rachel Bluth and Alice Miranda Ollstein.

Click to open the transcript Transcript: The Health Risks of AI

[Editor’s note: This transcript was generated using transcription software. It has been edited for style and clarity.] 

Julie Rovner: Hello, from KFF Health News and WAMU Public Radio in Washington, D.C. Welcome to What the Health? I’m Julie Rovner, chief Washington correspondent for KFF Health News. And, as always, I’m joined by some of the best and smartest health reporters covering Washington. We’re taping this week on Thursday, Sept. 17, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. Today we are joined via video conference by Alice Miranda Ollstein of Politico. 

Alice Miranda Ollstein: Hello. 

Rovner: Anna Edney of Bloomberg News. 

Anna Edney: Hi, everybody. 

Rovner: And Tami Luhby of CNN. 

Tami Luhby: Howdy. 

Rovner: Later in this episode, we’ll have my interview with Sabrina Corlette, one of the authors of a new paper from the Georgetown University Center on Health Insurance Reforms, about some possible shorter-term fixes for what ails our dysfunctional healthcare system. But first, this week’s news. 

So I try not to talk too much here about artificial intelligence, partly because we at KFF already have a separate podcast devoted to AI and its implications for the business of health, and partly because I am one of the many, many Americans who doesn’t really understand it. But I feel like we really can’t avoid it this week, with AI leaders all but pleading with Congress for regulation, lest they accidentally, or not, create something that could literally kill all us humans. And while I don’t think any of us has the expertise to comment on whether some future AI might actually be justified in trying to rid the planet of humanity, given what we humans have done to the planet, I’m more interested in reports about humans currently using AI to do things like manipulate viruses to create, you know, a pandemic — but maybe even a more deadly one than the one that we just had. Anthropic, which touts itself as the most ethical and responsible of the big AI companies, said it has already halted several attempts to use its AI bot, Claude, to potentially develop bioweapons. I feel like maybe this is something members of Congress might want to address in the near-term future? 

Edney: Definitely, I think that, like, the timing for this, given what’s going on in the larger AI world with these warnings that we’re seeing, was certainly very ominous for creating that potential worst pandemic that you’re talking about. And it does seem like it could be part of that discussion and what Congress may want to do; it could be sort of its own thing. It’s unclear how that’s going to be handled, especially, I think, we all are aware of the timing as well, with the midterms coming up and Congress not getting a lot done. And this is a really complicated subject, I think — the kind of issues with this report coming out was these could be just regular research queries. You know, it’s really unclear if this was nefarious. If it is, that’s really bad, and if it wasn’t, let’s not get worked up about something that isn’t there yet. But it does show that there’s the potential for that to happen. So …it’s good to think about it early. 

Rovner: And of course, the House, we should mention, has up and left until after the election. So they couldn’t do anything even if they wanted to. Alice, you wanted to add something? 

Ollstein: Yeah. So I was up on Capitol Hill yesterday, and there did not seem to be a groundswell of interest in rapid action and keeping the members in session to deal with this. I mean, when it comes, you know, to technology, especially, often federal policy is decades behind, you know, where the technology is going and moves so much slower. And I don’t know, even if there was the political will to stay in session and do something, if they would even know what to do or be able to come up with something quickly. This is something that could take years. Meanwhile, the technology itself is just leaping ahead in leaps and bounds, and so I am not optimistic about a robust response from Congress, given their record recently, and given what I witnessed on the Hill. Even though there is bipartisan interest in doing something, but what that something is, there is no agreement. 

Luhby: There’s a legitimate concern of how/what China is doing with AI, and even if we control what’s happening within our borders, we can’t control what’s happening with the development in the world. So that is an overarching problem that Congress can’t solve. 

Rovner: Right. 

Ollstein: I also often hear, you know, Oh, we should really pare back AI on everything except healthcare because it has so much promise in the healthcare space. But there’s also a lot of risk in the healthcare space. I mean, you were mentioning the development of potential viruses and bioweapons, but even beyond that, there’s already reports of AI being used to deny people’s claims, to entrench human biases in decision-making. You know, there’s a lot of risk in the healthcare space, too. It’s not all sunshine and rainbows and the risk is only in other areas. 

Rovner: Well, you are actually anticipating my next question, which is: Meanwhile, from the “AI might not actually kill us, but it’s going to make a lot of people rich” file, my former colleague Christina Jewett, now at The New York Times, has a story this week about how medical AI entrepreneurs are exercising perhaps undue influence at the Department of Health and Human Services, and, according to the story, worrying some officials that AI adoption in medicine is coming faster than the evidence that it’s safe and effective — never mind money-saving. Again, as you were saying, Alice, I can’t imagine technology in medicine running ahead of attempts to regulate it. That’s only happened basically every time for the last 50 years. 

Edney: I think the attempts to regulate it are — the issue is who’s going to do the regulating. The FDA seems sort of split right now, where you have the traditional medical devices director, and this is Christina’s reporting, as you mentioned, Julie, someone … more in the commissioner’s office who is a tech-connected person wanting to wrest the AI part of regulation from the medical device center, where it normally sits. So I think that that question, too, is still being figured out. 

Rovner: And there’s even the, you know, what is AI? Is it a medical device? What kind of evidence would one need to approve it? Who would approve it? I mean, there’s definitely a lot more to come here. All right. Well … 

Luhby: Looking at healthcare’s role in the economy, it’s a major source of jobs right now and in the future, but it may not be, depending on what happens with AI. I was just actually at a doctor’s appointment at a major New York City medical center, and the doctor was speaking to, you know, a human assistant in the room, which I was — and I said to her, “Thank you so much for actually, you know, using humans.” And she sort of said, “Well, we’ll see how long that lasts,” indicating that her medical center may be really pushing doctors to use more AI scribes. And I was thinking, Wow, that’s going to cost a lot of people their jobs. 

Rovner: Although I just went to the doctor, and he was starting to use an AI scribe. He said he was just trying it out. So we will see how this all moves on. All right. 

Well, back to the pocketbook issues that seem to be driving voter anger this fall, even more than AI and data centers, President [Donald] Trump, the day after he floated the idea of sending all U.S. adults a $5,000 check if they return Republicans to power after the midterms, separately is proposing to send a $500 check before the elections to about a million unsubsidized enrollees in the Affordable Care Act plans. Unlike the $5,000, which would pretty clearly have to be approved by Congress — spoiler: probably won’t happen; it would be really expensive — the $500 ACA checks at least seem plausible. They represent unspent user fees the federal government has already collected. Two questions about this: One, is it really legal? And, if it is, and the administration does it, will it make up for the huge increases that most unsubsidized ACA enrollees saw in 2026 after the Biden-era extra subsidies expired? A lot of people saw increases that were a lot more than $500 just this year. 

Luhby: I mean, I think it’s questionable as to whether it’s legal and also whether it’s fair, because you’re also talking about giving this money only to be unsubsidized. And you can argue that, yes, the people who got subsidies already got, you know, a federal gift. But there are a lot of questions about these checks. But as far as whether they will make up for the massive increase in premium payments that a lot of folks have paid — especially for the people who didn’t receive subsidies, which, who are generally the people who make more than, you know, 400% of poverty, or … even a higher percentage, because the changes in the subsidy structure — those people are probably among the most … the ones who had the highest increases in premiums between ’25 and ’26. And there’s another round of double-digit premium increases on the way in 2027, or for 2027. So Cynthia Cox, one of our favorite experts at KFF, questioned whether $500 would even cover one month of a premium increase, much less one year. But, you know, as we know, healthcare costs are on the top of voters’ minds, and the Trump administration feels like it has to do something to say that it is helping to lower them ahead of the midterm elections. 

Rovner: Yeah, and this would be, I guess, something that they, in theory, could do. Well, moving on, it may be time to revisit one of the few bipartisan pieces of consumer health legislation of the past decade: the No Surprises Act. That law has successfully spared millions of patients from ending up in the middle of payment disputes between health insurers and medical providers. What it hasn’t done such a good job at, though, is settling those disputes in a cost-effective way. Instead, to quote from the Georgetown study that’s the subject of this week’s podcast interview with Sabrina Corlette, “the dispute resolution process created by the law has cost the health system an estimated $22 billion in just four years.” As a result of that, groups from across the ideological spectrum, from the liberal Families USA to the conservative Paragon Institute, as well as Republicans and Democrats on some key committees in Congress, are sounding the alarm that something needs to change. Now this arbitration process that’s gotten so out of whack was the very last thing settled and almost scuttled this law on the launchpad. Is there a suitable alternative available, or will the magnitude of how badly this arbitration process is skewing in favor of providers who are getting enormous payouts going to force some sort of compromise? 

Edney: It seems like there needs to be a compromise. I was a little surprised that that’s being acknowledged. I think when this was first being talked about and coming to light, it seemed like the lawmakers were like, “Well, the law is working for patients,” and, like, “Well, you know, it’ll be OK.” But as you know, those numbers are coming in, that’s … billions of dollars. That’s a huge amount. And, you know, there are options. I think a lot of it was talked about and not agreed upon. But maybe benchmarking these to what Medicare pays or something along those lines when there’s a dispute could be more palatable, given, you know, what’s going on now that they’ve seen the results of what ended up being put into law. 

Rovner: Of course, that was, I mean, that was the hope when they were doing this is that they would set some sort of upward bound of, you know, yes … 

Edney: Right. 

Rovner: And sure, if you’re trying to lowball the provider, we’re going to make sure the provider gets at least something, you know, that’s reasonable if they’re not in-network. Except what’s happening is, with these arbitrations, these providers are getting things that are way more than anticipated, and that’s turning back into these premium increases that we were just talking about. I mean, it’s all sort of one big circle here. 

Luhby: Right, and that’s one thing that, you know, as Politico reported this morning, that’s one thing that employers and insurers want to make sure that people know, and that congresspeople know, is that these increases, these, you know, these payouts that they have to provide for the doctors are going to increase premiums. And you know, as we just discussed, healthcare is on the top of voters’ minds. Already, you know, various consulting groups have said that employer coverage, which is the most prevalent type of coverage, the premiums again are going to increase by a lot for 2027. And, you know, again the employers and insurers are pointing fingers at this arbitration, you know, provision and what doctors are doing and how they’re manipulating it as one of the drivers of these increased healthcare costs and premiums. 

Rovner: All right, we’re going to take a quick break. We will be right back. 

Moving to immigration, this week nearly half the states filed suit in federal court to block the Trump administration’s new, quote, “public charge rule.” That’s what gives immigration officials more leeway to block people from entering the country who they think could eventually qualify for government aid. Tami, you wrote about this. What are the states arguing, and what are they asking for? 

Luhby: Well, the main concern here — they want the rule to be blocked, but it looks like it’s supposed to go into effect tomorrow. And at this point, we know that the judge — there are two lawsuits: there’s states and cities — and the judge — it shouldn’t be probably the same judge, but we don’t know for sure yet. And the judge who has been assigned to the state lawsuit is not holding an initial hearing until, I think, it’s Oct. 9, or it’s early October, so it does look like the new rules will go into effect on Friday. But basically, what the concern is is that this is going to end up causing a lot of immigrants, particularly their families, particularly their U.S. citizen children, who may be eligible for benefits like Medicaid, like CHIP [Children’s Health Insurance Program], like housing vouchers, food stamps, school meals, WIC [Special Supplemental Nutrition Program for Women, Infants, and Children]. There’s, you know, a huge number of safety net programs that these immigrants and their families may choose to drop out of or not enroll in, and this is going to cause, obviously, you know, major concerns for hunger, for health, and housing. And the cities and states are arguing that they’re going to be harmed because they’re going to have to pick up the tabs. And, you know, these people will still need to, you know, obviously have healthcare and housing and food when it comes to it, so they’re concerned about their public costs as well as their local economies. 

Rovner: Yeah, and I mean that’s a really important point, which is that this is not just about people coming into the country. This is about people who are already here. Alice, I know you’ve done some reporting on the whole public charge issue, and we’ve got a really good KFF Health News story that I will link to this week that’s called “A Generation of Kids Suffer as Trump Destabilizes Immigrant Families.” This is really reaching much beyond — you know, they originally, he said we’re just going to deport the worst of the worst — but this is reaching much, much further into immigrant communities here legally in the United States, right? 

Ollstein: Yeah, and I think there are just a lot of downstream consequences of this that we saw the first time they did this in the first Trump administration, and that, you know, folks are predicting will happen again that impacts everyone in the community. So for one, immigrants tend to be younger than the general population, and so removing them from these, you know, insurance systems could raise other people’s premiums — you know, the people who remain, because the costs will be higher. It’ll be an older, sicker population sharing those costs. Also, you are seeing that when these rules go into effect, people who remain eligible for the insurance programs, just out of confusion or fear, don’t enroll, and so it impacts even the people it doesn’t officially apply to, through a chilling effect, which, again, you know, leads to those same higher premiums and worse risk pool. But also, you have, you know, you mentioned risks of infectious diseases; if you deter people from getting preventive care, from getting vaccines, from getting checkups, that puts the whole community at risk. 

Rovner: Yeah. 

Luhby: And even DHS [Department of Homeland Security] itself acknowledges that there’s going to be a chilling effect. They estimated that 950,000 people may opt to leave or not enroll in — they examined six public benefit programs: Medicaid, food stamps, CHIP, federal assistance — and I think nearly a million people who, you know, are eligible for these safety net programs who may not participate. 

Rovner: Well, I guess that is one way to cut the budget. 

Turning to reproductive health, Alice, there’s movement on that story you’ve been following about testing wastewater [drinking water] for remnants of abortion pills. Now, what’s the latest? 

Ollstein: Yeah, so this was a story my colleagues and I broke recently that the EPA [Environmental Protection Agency] itself is now going to do some testing on this front. Of course, they’re not testing just for abortion pills; they’re testing for a bunch of different pharmaceutical medications. But putting abortion pills on that bigger list is, you know, something that anti-abortion groups have been clamoring for years and are counting now as this big victory. Of course, they’re still pushing for a separate process where EPA would require utilities around the country to monitor for certain drugs, including abortion pills. And so they’re still pushing on that front. But they consider this a step towards, you know, potential restrictions. Now, it’s important to know that the test the EPA is using only will show if any amount is detectable in the water; it will not determine the concentration. And so even if they say, “OK, we found traces of this,” it doesn’t mean it has any impact on plants, animals, humans. It does not mean that. So whatever they come up with, it’s important for people to keep that in mind. Environmental experts we talked to stress that this is sort of a bad-faith push. There is no evidence that there’s any actual environmental harm here. Pharmaceutical contamination of water is a real thing, but there are medications that are way more of a threat in their minds than this one. 

Rovner: Yeah, but this is what they’ve been pushing as yet another way to try to go after abortion pills. Well, meanwhile, while the FDA continues to restudy the safety of mifepristone, at the urging of anti-abortion groups, in California, the attorney general is wrapping up a lawsuit against two anti-abortion nonprofits for their proffering of abortion pill reversals that purport to stop a medical abortion partway through. Unlike mifepristone, which has been studied in many clinical trials in the U.S. and internationally, there is no evidence that giving the hormone progesterone can save a pregnancy partway through a medical abortion. Alice, how big an impact could this case have, and when do we expect to hear from the judge? 

Ollstein: So this could really set a precedent. There are a lot of legal battles around the country. There’s another one the New York attorney general is in the middle of that is similar to this one. But it’s getting into this interesting space between protecting patients versus free speech and what clinics, even, you know, less-regulated crisis pregnancy centers, like the ones that are at issue in this case, what they can tell people and whether states are able to regulate that in the name of protecting patients from potential harm. Like you said, this hormone regimen, where after you take mifepristone, which is an anti-progesterone, you know, they’re saying, Oh, if you change your mind and you don’t want to have an abortion after all, you can take a high dose of progesterone to counteract the effects and save the pregnancy. Again, this has been very little studied, and the studies that have happened are methodologically weak. They don’t have control groups. They don’t have random sampling. They’re very, very small numbers. Whereas, like you said, the medical studies of mifepristone itself have been covered millions over the years, and so there’s just a lot more evidence of the safety record. And so, this could be really interesting coming out of California, in terms of these clinics, which have really become a major front in the anti-abortion movement’s larger battle. These centers are very prevalent around the country and have only grown in number since Roe v. Wade was overturned, and so they’re really seen as sort of the forefront of spreading the anti-abortion movement’s message. 

Rovner: Well, speaking of lawsuits that might set a precedent, the family of Tierra Walker, a 37-year-old pregnant woman who died in Texas of multiple complications after being repeatedly denied an abortion, has filed a malpractice suit against her doctors and is also suing Texas Attorney General and Republican Senate candidate Ken Paxton. Paxton, you may remember, personally threatened individual legal action against doctors who performed abortions, even on women whose medical conditions apparently qualified for exceptions to the state’s ban. What does it mean that they’re actually going after Paxton personally — or, I guess, in his role as attorney general in this case? 

Ollstein: Yeah, they’re going after state officials, and they’re going after the hospital, the doctors. There’s a lot of different charges in this one case. There’s medical malpractice charges. There’s [Americans with Disabilities Act] ADA-like discrimination, refusing-of-care charges. There’s the constitutional charges about the law itself. And so this is really sort of getting into new territory. It’s something I covered in my book, that doctors largely have reported that when they’re operating under abortion bans, they’re more afraid of providing what, even what they consider a medically necessary abortion. They’re more afraid of the legal consequences of providing it than the legal consequences of not providing it. And this is an attempt, and there have been some others to try to change that calculus. So I know there’s an ongoing case in Georgia as well, a medical malpractice case. But it’s sort of attempting to make doctors also afraid of the legal consequences of not providing what could be a lifesaving abortion, and we’ll see what the outcome is in this instance. 

Rovner: And we’ll talk more about this, and we’ll talk more about your book in the coming weeks as we get ready for its launch. Well, finally, this week the House may be gone, but the Senate is still here, and two Senate committees held confirmation hearings this week for Chris Klomp, the Medicare official who’s been nominated to be deputy HHS secretary, as well as a hearing for Nicole Saphier, the radiologist and former Fox News contributor, who is the latest nominee for U.S. surgeon general. At both the Finance Committee, which will vote on Clomp, and the health committee, which will vote on Saphier, there were lots of questions about the administration’s position on vaccines. This comes as Pennsylvania announces its third and fourth measles-related death this summer, and as HHS Secretary RFK Jr. [Robert F. Kennedy Jr.] gives a keynote address here in Washington today at his former nonprofit, the anti-vax group Children’s Health Defense. Interestingly, both Klomp, who is not a doctor, and Saphier, who is a doctor, sort of, kind of endorsed the measles vaccine, but neither appeared enthusiastic enough to satisfy HELP [Health, Education, Labor & Pensions] Committee Chair Bill Cassidy, who’s also on the Finance Committee, of their sincerity. Cassidy delivered some of his strongest critiques yet of the damage the administration is doing by promoting vaccine hesitance. Yet I wonder if Cassidy would plan to vote against either of these nominees, or if any Republicans plan to vote against either of these nominees. 

Edney: I think that’s a great question. And Cassidy clearly has not done that in situations where the stakes — you know, it seemed like, you know, he had more reason almost, I mean, there was more, at least, like, outwardly publicly, you know, conflicting with his stance, and he didn’t do it. So he is leaving Congress, so that could change things for him. But I’m not sure that I would expect some sort of vote that really spoke out against Trump at this point. 

Rovner: He voted to confirm the new CDC [Centers for Disease Control and Prevention] director, about whom he had basically the same questions. 

Edney: Yeah, “Boy Who Cried Wolf,” I think is what that was. 

Rovner: All right. Well, that is this week’s news. Now we’ll play my interview with Sabrina Corlette, and then we’ll come back with our extra credits. 

I am pleased to welcome to the podcast Sabrina Corlette. Sabrina is a research professor, founder, and co-director of Georgetown University’s Center on Health Insurance Reforms. She’s also the co-author of a brand-new paper called “A Three-Part Strategy for Better Health Insurance” that includes a series of policy changes Congress could make in the short term that could help patients better navigate our messed-up healthcare system. Sabrina Corlette, thanks for joining us. 

Sabrina Corlette: Oh, it is such a delight, Julie. Thank you for having me. 

Rovner: So, I think a lot of us have been predicting that rising costs, lowering access, and increasing confusion is frustrating patients to the point that the nation is likely headed for another major healthcare debate, probably after the next presidential election. But this paper focuses on smaller changes that could be made in the nearer future. What made you decide to look at that? 

Corlette: Well, I’ll be honest, Julie, one inspiration was the KFF [Health News] “Bill of the Month” series. You know, I follow that series, and I just saw story after story about patients encountering just the craziest billing situations, coverage challenges, and it just struck me — particularly in this last year, where we had this big debate over Medicaid and the Affordable Care Act marketplaces, and a number of groups and lawmakers were defending a status quo that, quite frankly, nobody was happy with — and so I got together with some of my colleagues, you know, what are some concrete things that would have a tangible impact on people’s experience with their health insurance that can be done quickly, would not require a lot of money — because as you know, Julie, all too well, anytime you want to improve coverage, immediately employers and others say, “Well, this is just going to raise premiums.” So we wanted to come up with something that could immediately improve coverage without raising costs, and learn from some state actions that, you know, are quite frankly happening on a bipartisan basis. So, things that felt achievable. 

Rovner: Right. So, your first part is looking at immediate ways to reduce healthcare costs. What are some of those proposals? 

Corlette: Yeah. Sort of a marquee proposal in here is to bring down deductibles. Deductibles have risen 43% over the last decade or so, and they’re just [an] insurmountable cost barrier for so many American families. So that’s No. 1. But as you know, Julie, if you were to try to lower deductibles across the board, it’s like pushing on a balloon, right? Immediately, premiums are going to go up. So the second part of that proposal is to reduce spending on excessive hospital prices that are, you know, many, many multiples of the Medicare rates. And we’ve seen real progress on that at the state level, with states as diverse as Indiana and Vermont starting to rein in most hospital prices. 

Rovner: And we’ve seen both Democrats and Republicans pointing their fingers at hospitals. We’ve talked about that a lot on the podcast — that hospitals are clearly one of the big drivers right now. That seems to be getting through to policymakers, if not to patients. 

Corlette: That’s right. Yep. 

Rovner: That’s the cost part. Next is reducing unnecessary complexity, which I know is something that everybody would appreciate. What are a couple of the things that we could do there? 

Corlette: Yeah, I mean the main thing that we looked at there was the prolific use of what’s called prior authorization, which is, like, before you can get a healthcare good or service, you have to run it by your health plan and get their advance approval. And that’s just, you know, it used to be that that was really used for certain experimental or very, very high-cost types of services, and now it’s just endemic. And so we propose a number of reforms to — not eliminate that practice because, you know, you do need some checks on the system — but to really try to streamline it and reduce the burden for not only patients but physicians as well. 

Rovner: So last is protecting patients from corporate abuses — again, something that seems to have some bipartisan backing and that people get really furious about? 

Corlette: Yeah, and here the list is pretty long, but I’ll just [home] in on one element, which is reining in some of the more egregious financial practices of private equity, which has really entered the healthcare space in a big way in the last decade or so. And so trying to limit some of the transactions that they engage in that sort of strip assets from a healthcare provider to line the pockets of the investors and really drain away the infrastructure of the, say, the hospital or health system, so that it’s not able to provide as high-quality care. 

Rovner: Things like buying the hospital and then selling the real estate out from underneath, so the hospital now has to pay rent. 

Corlette: Exactly. 

Rovner: And you want to fix the dispute resolution system from something that Congress already tried to fix on a bipartisan basis, which is stopping surprise bills, right? 

Corlette: Oh my gosh, yeah. I mean, you know, that’s one of those issues, again, I think could be very bipartisan. And it’s not every provider in the system, but largely private equity-backed physician group practices really taking advantage of the dispute resolution process under the No Surprises Act to the tune of $22 billion in costs. All that is being passed on in the form of higher premiums for employers and policyholders. So, yeah, we propose some significant reforms to that process. 

Rovner: So, all of these things together are what we health policy types like to refer to as low-hanging fruit, in that it would be less controversial, say, than “Medicare for All.” But we’ve seen that even incremental changes like these that have bipartisan support can be really hard to push through. How optimistic are you that this Congress and this administration, both of which have said they want to do stuff about healthcare and healthcare costs, might be able to actually get any of this stuff done? 

Corlette: Well, I think you and I both, Julie, have been doing this work for long enough. It’s true, nothing is easy. But I will also say that if you look at the polling, Americans now rank healthcare costs higher than groceries and housing as their No. 1 cost concern. I, quite frankly, think that if you’re a politician and you’re not listening to that data and thinking about ways you can reduce costs for people, then you’re committing political malpractice. 

Rovner: We will see if any of this gets picked up. But thank you for doing the paper, Sabrina Corlette, and thank you for joining us. 

Corlette: Thank you for having me. 

Rovner: OK, we’re back. It’s time for our extra-credit segment. That’s where we each recognize a story we read this week we think you should read, too. Don’t worry if you miss it. We will post the links in our show notes on your phone or other mobile device. Anna, why don’t you go first this week? 

Edney: Sure. This is a story from a few of my colleagues: “Patients Who Fight Health Insurance Denials Often Win.” And they took a look at some recently released data about prior authorizations and denials, and, essentially, you know, seeing how often people are able to overturn those when they try. Not a lot of people know that they can try to appeal that. And so I really encourage everybody to take a look at it. Check out where your insurer is. I think that that was interesting for me because, you know, they did it by insurer, so you can see what their stance is and how often they’re denying things. 

Rovner: Yeah, and that reminder that we always have with the “Bill of the Month.” It’s, like, don’t pay the first bill, and if you get a bill, don’t be afraid to appeal it. Tami. 

Luhby: My extra credit is a Washington Post story titled “What ‘Ferritin Face’ Means — And How To Tell If You May Be Iron-Deficient,” by Erica Sloan. The story stood out to me, personally, because I was actually diagnosed with low ferritin 14 years ago, but it took time for the doctor to figure out why I was feeling so tired. So I, actually, I had blood tests, and then I actually went to a sleep doctor because I was figuring, Well, I must not be, you know, sleeping well at night. Maybe I have sleep apnea. But he actually asked to see the blood tests, and he was the one who pointed out my low ferritin levels. So, for those who don’t know, ferritin is a protein that stores iron in the body. And the story cautioned people — the ferritin face, I think, is what got, you know, is trying to get people into the story because apparently this is a thing, although I had not heard of it before this. 

Rovner: A thing on social media. 

Luhby: Yeah, a thing on social media, and I don’t think I actually ever had ferritin face. I asked my husband. But the story cautioned people from trying to diagnose themselves with iron deficiency based on social media and influencers. But the attention, they said, is raising awareness about iron deficiency, which is really important and which is the, you know, the step before anemia. So I thought the story was important because it highlights how common iron deficiency is — nearly one-third of U.S. adults are affected — but how, I was surprised, it’s not part of regular screenings. And the article goes on to explain how to test for iron deficiency, which is to check your ferritin level, and how to treat it, which is to eat more iron-rich food, like spinach, beans, red meat, fortified cereals — or, if your iron levels are very low, to take iron supplements, which I also personally know are not the most fun because they can cause GI [gastrointestinal] issues. So, and if you’re curious about what ferritin face is, which I was, is apparently it falls under the, you know, “looking tired” umbrella: a dull complexion, dry skin, cracked lips, under-eye circles. But, you know, I think those are symptoms of many things other than iron deficiencies. 

Rovner: And yet still news you can use. Alice. 

Luhby: Yes. 

Ollstein: I have a story from KFF [Health News]. It is by Ashley Mizuo, and it’s called “Indigenous Groups Are Exempt From Medicaid Work Rules, but Native Hawaiians Aren’t.” And it examines how, you know, lacking official federal recognition of your tribal status is making Indigenous Hawaiians, who are facing a lot of the same challenges as other Native groups in the mainland U.S., are not exempt from these new Medicaid work requirements that are starting on Jan. 1. And that could be a big barrier to care, and they already have a lot of barriers to care, including sometimes needing to travel from one island to another in order to access services. And so this could really prevent a lot of people who have a lot of health challenges from getting care they need. And so it, you know, looking at a sort of niche overlooked consequence of these new rules. 

Rovner: My extra credit is also about an overlooked consequence. It’s a local story from KJZZ Phoenix public radio called “Data Shows DES Failed To Complete Most SNAP Eligibility Interviews, Resulting in Massive Cuts,” by Camryn Sanchez. And in a situation reminiscent of people in Arkansas losing their Medicaid back in 2018 because the state couldn’t stand up a system allowing them to report their work hours, it seems Arizona can’t figure out how to keep eligible SNAP [Supplemental Nutrition Assistance Program] beneficiaries on that program. Turns out that the state agency that runs the program reported that nearly 9 in 10 interviews with applicants were abandoned, dropped, or otherwise incomplete. The agency itself said it dropped more than 3 million calls due to call-center error or lack of call-center capacity. As a result of that, 53.7% of Arizonans attempting to recertify their food benefits were denied for failing to complete the interview. It is just a really wow story, and, you know, the point that, really, it is incumbent on the states to make these things available. That’s part of why they are supposed to be there. 

All right, that is this week’s show. Thanks to our editor, Emmarie Huetteman, and our producer-engineer, Francis Ying. A reminder: What the Health? is now available on WAMU platforms, the NPR app, and wherever you get your podcasts — as well as, of course, kffhealthnews.org. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can find me on X @jrovner, or on Bluesky @julierovner. Where are you guys hanging out on social media these days? Anna? 

Edney: @annaedney on X or Bluesky. Also on LinkedIn. 

Rovner: Alice? 

Ollstein: @alicemiranda on Bluesky and @AliceOllstein on X. 

Rovner: Tami. 

Luhby: I’m just at CNN.com these days. 

Rovner: That’s fine. We’ll be back in your feed next week. Until then, be healthy. 

Credits Francis Ying Audio producer Emmarie Huetteman Editor

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The scenario often unfolds like this: Medical researchers investigate a frequently used drug and report that it’s less effective for older patients than previously thought, or that its risks outweigh its benefits in older adults. More studies follow, confirming those findings.

After a few years, medical associations revise their guidelines, warning that the drug in question should be avoided or at least prescribed more selectively. It might be added to the Beers Criteria, an influential list of potentially inappropriate medications for older patients, published by the American Geriatrics Society.

If the drug’s role is preventive, the U.S. Preventive Services Task Force, an independent expert panel, may weigh in with cautions. The FDA may issue “black box” warnings about concerning side effects.

After a few more years, researchers look at broad national data to see whether use of this drug declined. Often, the answer is: Yes, but not enough. Sometimes, though, use didn’t decline much at all or actually increased.

“Medications are like barnacles,” said Michael Steinman, a geriatrician at the University of California-San Francisco and co-director of the U.S. Deprescribing Research Network. “They’re easy to start, but they can be hard to stop.”

This medical inertia partly reflects the time lag involved in disseminating findings. “Clinicians have a million things they need to know and attend to, and information may take a while to get to them,” Steinman said.

But it also reflects the way “clinicians and patients get used to treating conditions in certain ways,” he said. “They become ingrained habits.” Finding alternative approaches is challenging, so “it’s easy to go with what you know.”

Recent studies of three medications or classes of drugs widely used among older Americans illustrate the problem.

The Drawbacks of Benzodiazepines

Scientists began raising alarms about benzodiazepines more than 20 years ago. Prescribed for insomnia and anxiety, “they offer prompt relief,” said Mark Olfson, a psychiatrist and epidemiologist at Columbia University.

The problem? Benzodiazepines (including Valium, Xanax, and Ativan) and the related “Z” drugs (Ambien, Lunesta) “may impair balance, coordination, and cognition that can translate into falls and fractures and motor vehicle accidents,” Olfson said. In patients also taking opioids for pain, benzodiazepines can cause overdoses.

Moreover, “once you’ve taken them for a period of time, you develop a dependence,” Olfson added. “When you come off them, you may develop withdrawal symptoms.”

So what’s happened to benzo use among older adults, who are more sensitive to these effects? In a recent examination of prescribing trends, published in the Annals of Internal Medicine, Olfson and his team reported progress. Among people 65 and older, the rate of patients filling prescriptions for benzos dropped to 11.5% in 2024, from about 14% in 2015.

But that decline has stalled since 2020, perhaps related to the covid-19 pandemic. Moreover, prescribed use actually rose among those over 75, from 12% in 2020 to about 13% four years later. Dispensing through pharmacies in long-term care facilities more than doubled. And about a third of users were taking the drug for longer than six months, increasing the likelihood of dependence. “It’s worrisome,” Olfson said.

But he cautioned that patients shouldn’t stop benzodiazepines suddenly or on their own, which can provoke withdrawal. “It requires supervised tapering” with a medical professional, he said. “It takes many weeks.”

Overprescribing Antibiotics

For years, the standard treatment for diverticulitis, the inflammation or infection of small pouches that form in the colon, was antibiotics, primarily fluoroquinolones (like Cipro and Levaquin) or amoxicillin-clavulanate (Augmentin).

“It was unquestioned,” said Jesse Sutton, a pharmacist and researcher at the Minneapolis Veterans Affairs healthcare system. “Antibiotics are safe and effective, great, lifesaving drugs, so the mindset was: When in doubt, use them.”

But in 2015, the American Gastroenterological Association recommended against routinely prescribing antibiotics for “uncomplicated” diverticulitis, which represents a great majority of cases. Other medical groups followed suit.

Clinical trials had shown that, for this condition, antibiotics had little or no effect on mortality, the need for surgery, complications, or recurrences. “They hadn’t improved anything,” Sutton said.

And as with any drug, “there are downsides, unintended consequences,” he said. “Side effects from antibiotics account for a substantial amount of emergency room visits” for symptoms like nausea, vomiting, and diarrhea. Antibiotics heighten the risk of the virulent C. difficile infection, too.

Plus, “the more you use antibiotics, the less they work in the future,” Sutton said. The World Health Organization has deemed antimicrobial resistance “a major global health threat.”

So Sutton and his colleagues, studying treatment in 70,000 visits to 120 VA facilities, expected to see antibiotic use for uncomplicated diverticulitis decline over 10 years.

Instead, they reported recently in the Annals of Internal Medicine that antibiotic prescriptions remained nearly universal at 97% of visits, guidelines or no guidelines. The patients would most likely have done as well with a few days of Tylenol and a clear liquid diet.

Antibiotic overuse remains common for other conditions of later life, too, including the kind of urinary tract infections that cause no troublesome symptoms and upper respiratory infections that are typically viral, not bacterial.

In such cases, when a doctor prescribes an antibiotic, “I’d encourage patients to say, ‘Please explain the rationale for doing this,’” Sutton said. “If they don’t, it’s OK to press pause.”

When Aspirin Isn’t the Answer

Aspirin is different. Because it’s cheap and sold over the counter, anybody can start taking it on their own — and millions of older Americans do, thinking it will help prevent cardiac problems.

For people who’ve already had a heart attack, stroke, or cardiac intervention like a stent or bypass surgery, daily low-dose aspirin for “secondary prevention” does lower the odds of another event, studies have demonstrated.

But for “primary prevention” in people who haven’t had one, the guidelines changed in 2019, when the American College of Cardiology and the American Heart Association recommended against aspirin for this purpose in those 70 or older. The U.S. Preventive Services Task Force went further, warning against aspirin for primary prevention starting at age 60.

Large clinical trials had shown scant benefit for aspirin as a primary prevention measure, but there were harms, notably gastrointestinal bleeding. “As we age, the risks of bleeding go up,” said Timothy Anderson, an internist at the University of Pittsburgh who co-directs its Prescribing Wisely Lab. More rarely, but more seriously, aspirin can cause bleeding in the brain.

In a JAMA study published last year, Anderson and his co-author found the message was getting through: Aspirin use for primary prevention, as reported in the National Health and Nutrition Examination Survey, had dropped substantially from 2011 to 2023. But more than a third of those 70 or older were still taking it.

Some caveats: A subgroup of older adults with high risk factors for cardiovascular disease may benefit from aspirin for primary prevention. And, confusingly, some evidence suggests that older patients already taking aspirin face a higher risk of cardiovascular disease if they discontinue it.

“Step 1 is a conversation with your primary care physician” about aspirin, Anderson said. “‘Is this still right for me as I get older?’”

Older patients taking aspirin, many without any medical guidance, “are interested in reducing their risk of heart attack and stroke,” he said. “They’re trying to be proactive and healthy.” But with blood pressure medications and statins for cholesterol, “we have better strategies than aspirin for that.”

The New Old Age is produced through a partnership with The New York Times.

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

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When Josh Fleig, Louisiana’s chief innovation officer, learned his state had set aside $20 million a year, for five years, to invest in startup rural health companies, his reaction was not surprising: “Wow!”

In rural America, where people are often reported to be sicker with poor access to healthcare, the cash influx is a relief. In the economic development space where Fleig operates, it’s an opportunity.

“Look, that’s a lot of money for what we do,” said Fleig, whose state-funded economic development office invests in corporate launches, ranging from software startups to shipbuilders.

Josh Fleig, chief innovation officer for the Louisiana Economic Development agency, says he’s excited to help fund startup technology companies that could improve the health of rural residents in the state. (Margot McNeely/Louisiana Innovation)

Louisiana and a handful of other states set aside money from their share of the $50 billion federal Rural Health Transformation Program to quickly invest in new technologies, mirroring private industry moves. Lawmakers added the rural health program to offset more than $900 billion in reduced Medicaid spending expected over 10 years from Republicans’ sweeping 2025 tax and spending law.

But rather than filling the budget hole, the rural program’s assignment is to find new approaches for revitalizing rural communities where doctors are in short supply and hospitals have been downsizing and closing for decades. The federal government doled out the first-year rural health program awards to states this year, with pots ranging from $147 million in New Jersey to $281 million in Texas.

Modernizing technology infrastructure is a key pillar of the federal rural health program, and the catalyst money epitomizes the administration’s strategy to move fast and experiment with untested technology — much like the “move fast and break things” mantra during the heyday of Silicon Valley.

Instead of breaking things, though, the goal is to “move fast, fast-fail, innovate quickly, and move to sustainability,” said Aaron Bujnowski, a managing director with the healthcare industry group at the consultancy Alvarez & Marsal. “This is a transformation that is still meant to serve the people.”

Rigorous Rules and Tight Deadlines

Beyond Louisiana, Timothy Foster, a spokesperson for the Centers for Medicare & Medicaid Services, confirmed that Delaware, Georgia, Massachusetts, Nebraska, South Carolina, Virginia, and West Virginia are also creating rural health tech catalyst funds.

Every year, states must compete for rural funding in the five-year federal program. Federal regulators will take money away from states that do not meet the goals promised in their applications, including whether they designated money to companies for tech innovations.

CMS, which is overseeing the program, released a seven-step guidance document for states to follow when creating the tech catalyst operations. No more than 10% of each state’s award can be spent on a rural tech catalyst fund.

States’ initial annual progress reports for the rural fund were due at the end of August. CMS has declined to publicly post those reports; it plans to publish an annual report on state progress. States must show that first-year funds will be obligated — but not necessarily spent — by Oct. 30, according to the CMS guidance document.

Daniel X. O’Neil, a technology consultant who advocates for open data and open government, created a state tracker and parsed the original state applications to find dozens that mention catalyst awards and technology funds.

O’Neil said he is “looking forward to the clawbacks and the craziness of October because, you know, that’s serious stuff.”

For the rural health catalyst funds, CMS requires states to submit the list of finalists “at least 15 business days” before announcing winners, along with “sufficient information” for the agency to “assess each proposed project,” according to the guidance document.

The document outlines intellectual property and federal rights but does not provide guidance or standards for patient rights or protections. CMS spokesperson Foster stated in an email that the technology investments must comply with federal “privacy, security, interoperability, and patient safety” requirements.

Protecting Patients

Maya Sandalow, director of the health program at the Bipartisan Policy Center and one of the leading analysts watching the rural fund, said the catalyst funds are “public dollars” and has called for more transparency in the overall rural health program. The center is a nonprofit think tank in Washington, D.C.

Accurate and timely reporting must be done to ensure “the necessary guardrails are in place” to protect patients, she said, adding that the innovation needs to be “tested in a way that’s safe for the patients that they are going to be used on.”

To apply, startups must be less than 10 years old and have raised less than $50 million in early funding. Companies that win a portion of state catalyst funds must meet predetermined milestones before being paid — and federal officials will make “targeted reviews as needed,” according to the guidance document.

Louisiana officials announced the state’s tech catalyst fund with an event in rural Natchitoches, known as the filming location of the 1989 film Steel Magnolias. The fund quickly drew more than 200 companies competing for between $250,000 and $3 million in seed money.

Tiny startup Greens Health was invited to the event. The 2-year-old company analyzes Medicare claims to identify patients with chronic diseases, such as diabetes, and works with local home health nurses and senior facilities to improve care.

“We’ve been looking for a way to launch in Louisiana,” said Kehlin Swain, co-founder and chief executive of Greens Health. The company serves about 100 patients across Texas, Alabama, and Florida and hopes to get a $250,000 investment from Louisiana.

Louisiana’s Fleig said his state is “at a really interesting turning point.” The state secured $208.4 million for the first year of the rural health program and quickly created its catalyst fund using the state’s already established innovation department.

At the same time, nearly 1.1 million people live in Louisiana’s rural parishes and the state ranks as the “least healthy” in the nation, according to its own application. State rates of diabetes, obesity, and cardiovascular disease are among the highest in the nation.

Fleig believes Louisiana is an ideal place to test technology solutions. So, while Silicon Valley has “not needed much of what Louisiana has had to offer” for much of its existence, it does now, he said.

Caret Health is one of those companies. Co-founders Riya Pulicharam, who is a physician-researcher, and Kevin Zhao, an engineer, met in Silicon Valley. Together, they created a technology platform that identifies patients who need help getting to their appointments, having scans done, or picking up prescriptions. That technology flags a human, who then contacts the patient with a call or text.

Zhao said Caret had successful pilots at large health systems, but those places also had other vendors and “it was a pretty big uphill battle” to get in and scale. Then, in 2024, the company began paying attention to rural places.

“There wasn’t a lot of existing infrastructure. And that was really good for us because we were able to come in very quickly,” Zhao said. “A lot of the hospitals really needed this kind of service.”

Fast-forward to 2026: Caret Health is about 4 years old and has contracted with about 60 hospitals in 16 states. Pulicharam and Zhao hope to win $3 million to expand into Louisiana.

Louisiana’s Fleig said the state will take an equity stake in each company it invests in. “The dream” is that selected startup companies will also help the state make money to reinvest. If some companies fail — or fail fast — that’s to be expected, but the state should still make money because of “the law of averages,” he said.

“If we are good, we’ll make more money than we spent,” Fleig said. “Either way, it’s going to go back into improving healthcare outcomes.”

Rural Tech-Catalyst Funds: Fast-Moving, High-Pressure

First-year progress reports were due at the end of August. Using the annual report, federal officials will recalculate and potentially claw back money from underperforming states, according to reporting requirements created by the Centers for Medicare & Medicaid Services, which oversees the program.

States will be scored on a multitude of initiatives and plans, plus whether they earmark their first-year spending by Oct. 30. Year 2 funding will be determined by the end of October.

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Taya Hailstone has been in remission from childhood Hodgkin lymphoma for five years. But the cancer’s lasting damage to her organs and nerves can make basic tasks, like loading a dishwasher, hard.

Still, Montana’s health department decided last year that Hailstone is no longer eligible for low-cost disability health coverage through Medicaid. The department switched her coverage to the state’s Children’s Health Insurance Program, another Medicaid program — three months before she aged out.

Before making the decision, the state didn’t seek records from the medical team treating Hailstone, according to letters from those doctors reviewed by KFF Health News. Rather, the administrative ruling came after state officials learned the now-19-year-old had stopped receiving Social Security disability payments. She said she did that because she hoped to get healthy enough to work and save some money — beyond what’s allowed under the strict income caps tethered to those payments. But her health changes day to day, and she said for now she’s still too sick to consistently work.

Hailstone, who lives with her mom, has been able to keep Medicaid coverage while they appeal the case. She said that without Medicaid she can’t afford the treatment to manage the aftermath of her cancer.

“It feels like this process was made to make you give up,” Hailstone said.

Patients with disabilities have long struggled with administrative hoops, blunders, and confusion when trying to qualify for federally subsidized health coverage because of their illness. Now, new federal Medicaid work requirements mean states face the additional task of deciding who qualifies for a medical exemption. That means reviewing medical cases for an even larger swath of Medicaid enrollees.

Attorneys, researchers, and advocates who specialize in public aid said disability cases like Hailstone’s — though separate from the incoming work requirements — are an indication that states aren’t ready. As a result, they said, more people will be denied coverage in an opaque process.

“This will be the story of millions of people,” said Anthony Wright, who heads Families USA, a national nonprofit that advocates for ways to make healthcare more accessible.

Jon Ebelt, a spokesperson with the Montana Department of Public Health and Human Services, said the state doesn’t comment on individual Medicaid cases.

An estimated 18.5 million people will have to meet the new rules requiring them to prove they’re working, going to school, or volunteering to keep their Medicaid coverage, according to the Congressional Budget Office. More than 40% of those enrollees live with a chronic health condition, according to KFF. Some will be excused from those rules if they can prove they’re too sick to work.

More than 5 million people are expected to lose Medicaid coverage by 2034 because of the work requirements, according to the CBO.

Work Requirements Become Law

Many Republican policymakers and the Trump administration have touted Medicaid work requirements to preserve coverage for the neediest. Congress made that national policy through last year’s One Big Beautiful Bill Act and gave states until January 2027 to implement work-for-coverage rules.

Some states are starting those checks early. Montana began in July. Nebraska initiated work requirements in May.

In the federal law creating the work requirements, Congress allowed states to exempt people who have an illness that qualifies them as “medically frail.” Many states created plans for those judgment calls, only to be surprised when federal officials released rules for the requirements that went beyond what Congress outlined, by also requiring enrollees to prove their illness makes it too hard to work.

Families USA and other organizations have argued the new rules force states to set up a patchwork of systems that, together, would be larger and more complicated than the Social Security Administration’s own disability review system. Last year, that federal program cost more than $5 billion to administer to roughly 7 million people nationally. For comparison, Wright said, the federal law provided $200 million for states to share as they implement the work requirements. States are paying contractors millions of dollars to prepare often already flawed public aid systems to meet the new standards.

In June, 25 states sued the Trump administration over the medical frailty rules, arguing they’re too hard for patients to meet and for states to assess. That case is ongoing.

Hailstone was diagnosed with blood cancer at age 10. Her intestines tore, which led to their partial removal. As a result, her body struggles to process food and she can face severe dehydration. She said lingering side effects from her cancer treatment can leave her mind foggy and cause her hands and feet to swell enough that it’s hard to grip a fork or walk across a room.

Cancer dominated nearly half her life. It left mental scars, too.

“Some days you feel fine and then you suddenly crash,” Hailstone said.

Hailstone during her treatment for Hodgkin lymphoma. Though she has been in remission for five years, she deals with lasting effects from the disease. Now she is trying to convince the state of Montana that she should still qualify for Medicaid’s disability coverage. (Kyla Hailstone)

Hailstone and her mom live in Roundup, a central Montana town of roughly 2,000 people. They regularly make the nearly two-hour round-trip drive to Billings for specialized care. She typically has three medical appointments a week to see her physical and occupational therapists and a mental health counselor.

Hailstone said she’s lucky she has her mother’s help navigating Medicaid. Her mom, Kyla Hailstone, said that the state hasn’t clearly defined how it determined her daughter’s disability status and that its appeal process has been slow and dysfunctional.

Taya Hailstone would qualify for Medicaid based on her income if she can’t prove her eligibility for disability coverage. But that would mean proving she’s too sick to meet the work requirement — putting her in the same position of having to rely on a state review of her illness.

“If I lose this, this is life-changing,” Hailstone said.

‘Things Fall Through the Cracks’

Hailstone qualified as disabled through the federal government as recently as 2024, about a year before the state said it was dropping her coverage. State officials can do their own medical review to determine whether someone meets the federal definition of a disability to access Medicaid.

“Whether that happens is always a bit of a crapshoot just based on state capacity,” said Megan Dishong, deputy director of the Montana Legal Services Association, which helps low-income people navigate public programs. “Things fall through the cracks.”

Ebelt said the state health department accepts disability decisions from the Social Security Administration. The state agency can conduct an internal disability determination if a person doesn’t have one from the SSA, but Ebelt said it doesn’t have to if a person qualifies for coverage another way.

“We are committed to treating every client with respect and helping those who are eligible receive appropriate Medicaid coverage,” Ebelt said.

Montana instituted a three-month grace period for the work requirements. State officials won’t begin disenrolling people for noncompliance until October.

Pamela Herd, a University of Michigan social policy professor who has studied bureaucratic obstacles to public benefits, said convoluted disability cases are common enough for attorneys to specialize in accessing aid.

“When we’ve designed public programs in ways that people can’t figure out whether they’re eligible without consulting lawyers, we’ve done something wrong,” Herd said. “That has huge, huge implications for what’s to come.”

Montana officials have said they’ll automatically review medical records that could help patients qualify for an exemption. Even so, the federal guidelines released in June mean patients will probably still face additional steps to guarantee an exemption.

Meanwhile, already overstretched doctors worry they’ll face the burden of judging whether someone’s illness qualifies them for a work exemption.

Dishong said that between now and October, Montana officials could offer more clarity on how the process will work. She said she’s worried the state will end up “with a slow-roll mess” instead.

“This is a problem that’s just starting,” Dishong said.

As for Hailstone, she’s now reapplying for Social Security disability payments. That aid would limit how much she can work. But it would also guarantee access to Medicaid.

Have you tried to prove your eligibility for Medicaid under new rules that require people to show they are working, going to school, or participating in another qualifying activity? Click here to contact KFF Health News.

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Employer-sponsored health insurance covers more than 165 million Americans. It can entice someone to work at one company over another, or be a set of golden handcuffs that keeps them locked into a job they may not enjoy.

But rising costs are straining that system like never before. As premiums balloon, employers have started to pass on more costs to their workers, and the percentage of small businesses offering employees health insurance has dropped significantly.

Stat reporter Bob Herman has been covering this in his series “Out of Pocket, Out of Reach.” An Arm and a Leg host Dan Weissmann and Herman break down how businesses big and small handle the skyrocketing cost of providing health insurance and what it means for workers.

Dan Weissmann @danweissmann @danweissmann.bsky.social 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% Invisible," and "Reveal," from the Center for Investigative Reporting. Credits Emily Pisacreta Producer Claire Davenport Producer Adam Raymonda Audio wizard Ellen Weiss Editor Click to open the Transcript Transcript: System meltdown: employer-sponsored health insurance

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. Rachel Bernier-Green runs Thrive-O Financial Advisory on Chicago’s South Side. She describes herself as a fractional CFO for small businesses, offering strategic financial advice along with accounting services. And she says employee health insurance was part of her business plan from the beginning.

Before she even had employees, she built extra money into her prices, and at first, she put that extra money into a rainy day fund. But by late 2024, she thought the time had come. 

Rachel Bernier-Green: I’d been in business for a while. I had a few team members, and things were moving along. 

Dan: She wanted to keep those team members around, and she knew health insurance would help do that

Rachel Bernier-Green: And so that’s when I actually started to think, “How do we actually get this in place?”

Dan: She says she moved quickly– and by January 2025, her six-person team had health insurance.  Then things got wobbly.

Early in the year, a major client left. Income took a hit, and by spring she could see big trouble coming toward her. Insurance for 2026 was going to be way more expensive. And she could tell because some of her clients were already seeing rate hikes from their health insurance companies.

They had policies that renewed early in the year, . And these were much steeper increases than they’d been expecting, so they came to Rachel, their fractional CFO, to help them figure out how to adjust, and Rachel knew she would have to do the same.

Rachel Bernier-Green: It was almost like standing on a train tracks and you’re just kind of staring down the impending doom because you know you’re going to be in the exact same situation in a couple of months.

Dan: She says she shared the bad tidings with her team as data came in right from the start, and she said she makes a practice of sharing the company’s finances, details and all, with her colleagues. She calls it open book accounting.

Rachel Bernier-Green: We have regular team meetings where we’re discussing these things and we could all look at the numbers and the writing was on the wall. So when we kind of got to the end of the road, it wasn’t me saying, “Surprise, here’s what’s going on with the health insurance.” It was more, okay, we’ve reached the point where we have to make a decision and call it.

Dan: They made the call at a regular team meeting, which doesn’t mean the meeting was routine.

Rachel Bernier-Green: My heart was just in my stomach. Um, Because like I knew what we needed to do and I just didn’t want to, want to do it. 

Dan: But they’d gotten their renewal notice for 2026. Health insurance was gonna go up by more than 10%. Rachel says everybody agreed the business couldn’t afford it. 

Rachel Bernier-Green: The numbers were pretty clear in black and white. the entire team was on the same page that what was most important was that the business continues to survive so that we could bring back those benefits in the future. 

The thing I remember the most is that another team member who relied on the insurance reassuring me that that was the right thing to do.

Dan: Even with that kind of consensus, and even with a plan in place to bring back those benefits for 2027, Rachel describes the whole episode as devastating. She’s gone on a plan from her husband’s employer. Some other colleagues have done the same, one has left the firm, and two are uninsured. Rachel and her colleagues aren’t alone.

They’re a case study. A reporter named Bob Herman featured them recently in a story for STAT — a news outlet dedicated to health and medicine.  The headline for Bob’s story: America’s Small Businesses are Giving Up on Health Insurance. And the crisis Bob is reporting on goes beyond small employers. That story kicked off an eight-part series called Out of Pocket, Out of Reach, with a subtitle that tells you how big and how deep this crisis goes.

It’s “How America’s Employer-Based Healthcare System Continues to Crumble in Slow Motion,” which sounds scary and absolutely sucks, but it’s the kind of big picture look we really need, and Bob is exactly the person to break it down. He’s the Business of Healthcare Reporter at Stat. He has done the most comprehensive reporting on the giant UnitedHealth Group.

And for years, he’s published a list of the top paid CEOs in healthcare. These compensation packages go to the hundreds of millions of dollars a year in some cases. It’s completely wild. And he knows how to bring a huge story down to earth. He’s coming right up. This is An Arm and a Leg, a show about why healthcare costs so freaking much and what we can maybe do about it.

I’m Dan Weissmann, I’m a reporter. I like a challenge, so the job we’ve chosen here is to take one of the most enraging, terrifying, depressing parts of American life and bring you something entertaining, empowering, and useful. Bob Herman joined me from a closet. One of his kids had a friend over, it was the quietest place in his house.

He was sitting on the floor. I should’ve been recording the whole time. But we did have the recorder on when I asked him, “How did you come to the conclusion that employer health insurance doesn’t just suck, it’s crumbling?”

Bob Herman: Well, here, maybe it’ll help if I explain kind of the origins of why we even started it. Um, so I’d gotten back from parental leave last year around November. My wife and I just had our second kid, and literally the first thing I have to do, both of us, we both have to do when we get back, is we have to figure out what health insurance plans we’re gonna enroll for the next year, which, as I’m sure you and every one of your listeners knows, is a miserable experience. Um, and I… And we cover healthcare, and it’s still miserable. It’s tedious but also it’s, it, it is high stakes. And at that time, we had seen all the headlines that employer-sponsored health insurance was experiencing double-digit increases ac- everywhere. It is one of the primary ways that Americans are covered, and we’re all getting slammed in the face with historically high premium increases. It turned into, like, this needs to be a project at Stat. Let’s go after it. Let’s figure out what’s going on. And I think it just became very clear that employer-sponsored health insurance is not, you know, the robust product that I think a lot of people think it is.

Dan: And your conclusion here is, like, there’s a structural problem here, starting with how fast the cost of employer-sponsored insurance is going up. 

There’s a, there’s a really big number in your story where you kind of compare how much more health insurance costs now than it did 40 years ago comparing it to the rate of inflation. And basically, health insurance prices have risen almost four times as much as inflation in general. 

Bob: ?Right. And like, you know, we’re talking over the past several decades, almost 1,000% increase versus wages that were much, much lower than that., 

Dan:  So, one takeaway there is:  This huge increase amounts to something like a hidden pay cut for all of us. 

Bob Herman: Hopefully that’s one thing that this series can accomplish is for all workers out there, when you enroll in your health plan every year, how your employer’s paying for it, how much is getting taken out of your own paycheck. These are things that ultimately affect how someone can pay for their day-to-day things, like groceries feel expensive, rent feels expensive. Why? I think part of it is because your employer health plan, it’s become such a financial burden for everybody

Dan: Yeah. Yeah. That is, I, yes. I mean, you, you’ve said to me, I, I think about all the time, which is like, even if your employer covers your health insurance, , like every dollar that your employer is putting toward health insurance is a dollar they could be paying you. It’s a dollar that’s on the budget line for your position

Bob Herman: It’s exactly right, Dan, and this is like, you know, it’s like an iceberg. I think a lot of people see, like, what’s, what gets taken out of their paycheck every month. Like, okay, I’m paying, you know, a couple hundred dollars toward my health- health insurance premium. That is only, like, 20 to 25% of what your actual premium is.

Your employer’s paying most of it. You just don’t see it. But, like, there is so, like, this big block of compensation that you get, a big and growing chunk of it is for the h- for your health plan, and it’s so hidden, and I think that’s what kind of makes the whole p- the, the whole thing so difficult, uh, for Americans to afford.

Dan: I mean the amounts are really striking. The average employer plan for a family now costs 27 thousand dollars a year. That’s average, not the most expensive. And that’s like? It’s a new car, right? These days it’s y- and not, I mean, not a top-of-the-line car, but a Toyota Corolla is, you know, a car yeah 

Bob Herman: Yeah, it, it’s that new, it’s that new car every year, but the employer’s paying the tens of thousands that makes up most of the car. That’s the part that is hidden and that’s what, you know, I think makes the healthcare system, you know, really take advantage of everything

Dan: And, um, you know I notice you’re saying that the fact that it’s hidden helps the health care SYSTEM take advantage of everything.  Not just the health insurance companies. Because they make profits, band they’re the conduit through which everyone else also gets paid.

Bob: You’re right, like it is the health, the health insurance company often takes some for itself, yes, but majority of that money is, it goes out the door to hospitals, to drug companies, to doctors, to device makers, drug distributors, whoever else. Like, all those different companies know that the employer-sponsored system is like their golden goose. 

Dan: So that wild inflation in health insurance premiums — it’s driven by how much more everything in health care costs. How much prices keep going up.  You’ve said — I mean, everybody knows — we pay more for health care in the US than anywhere in the world. Knee replacement, MRI, any meds you can name, we pay a lot more. And I hear you saying: The fact that some of these costs are hidden — they’re bundled into employer health plans — that actually creates opportunities for price gouging, for all kinds of gaming the system. 

Bob Herman: there’s all this money that employers are dumping into these, you know, health insurance premiums for their workers, and it is, it’s like a feeding frenzy. Uh, you know, years ago I remember going to JP, the JP Morgan conference, uh, out in San Francisco. It’s just like the confab where all the big healthcare industry players, you know, gush about how much money they’re making. And commercial insurance, the employer-based insurance is their golden goose, and they know it. And, I, I went around talking to people, and it’s not like they were dismissing that idea. They know that the commercial insurance market, the, what we get, what we all pay for and through our employers, that’s where they make hay. They could charge whatever they want, they being hospitals, doctors, drugs, doesn’t matter. They know that there’s that massive pool of money there. It is, you know, just imagine, like, Scrooge McDuck, right, where there’s this massive pile of coins, and he’s kinda swimming through it. And

Dan: That image has come up before on this show. 

Bob Herman: Yeah, it, it’s just that is, that is the employer market. And, you know, it’s, it’s a lot easier to make money when, you know, the people who are paying into it don’t understand how much they’re paying into it

Dan: Yeah. So you came into this project ’cause you cover the whole business of healthcare. You were already thinking like, “This is a huge story people need to know about. It’s a hidden pay cut. It keeps making insurance and healthcare more expensive every year. Keeps getting worse.” But it, it sounds like you didn’t realize at first the kind of trouble that small businesses were in

Bob Herman: As I was just doing research and talking with people and reading up, you know, there was a KFF employer health benefits survey, I and just buried deep th- within this, very detailed report, there was this chart showing for companies with 200 or fewer employees, you know, a little bit less than 60% of these small companies were offering health insurance now. Historic low, it’s the lowest it, it had ever been . And I was like, And I was like, oh my God, like, that is a shift. It’s this idea that small companies are giving up on this grand American idea of offering health insurance. It’s actually unraveling right now. 

Dan: and so, you concluded small businesses are giving up on health insurance what does that mean they’re actually doing?

Bob Herman: Yeah. I think when we think about employer-sponsored health insurance, companies do it because it’s a retention tool. And , it could be a deciding factor for an employee to come work for you, right?

Like, “Oh, my gosh,” like, “this health plan looks pretty good. Sign me up.” but if, if it’s actually eating into your bottom line, especially as a small business where you don’t have a whole lot of margin to begin with, like that is, that is huge.

 Small companies, they already kind of live on the bleeding edge, right? They just, you know, if you’re at a Fortune 100 company, you have more money than you know what to do with. If you’re a small company, just by your nature, you don’t, you know, your business is small. And it means that the cost of health insurance eat into your expenses so much more.

 And, you know, if you’re just a company of like, for example, 25 people, and you have one really big medical claim, your insurance company can, could come back to you next year and say, “We gotta raise rates 20% because of that one medical claim.”  and, and you know what the crazy thing is? It’s like a 20% is a, a g- gigantic amount, and it’s not, like, that uncommon for a small business to get slapped with that. Like, I, I spoke with, a business in Pennsylvania, and they were staring down the barrel of, like, a 50% increase.

 It’s not uncommon for premiums to, like, double, which, what are you gonna do then? You have to look for other options.

Dan: A-and what you knew when you started was things are getting bad, like rates have been going up even faster than we’re used to, right?

Bob Herman: And the, the past two years in particular have been really bad because, you know, insurers, like they endured a lot of losses. Not a lot of losses, but like they, this … The, the losses were more than they had expected over the past couple years, and so they’re making up for it now. They made up for it in 2026, and they’re making up for it again in 2027, and that’s exactly what you and others are feeling right now

Dan: C- I mean, they’re the house. It’s a casino and they set the odds, and the house never loses. Like, it’s, it’s made that way. Like, you can’t… Like, the, the bookmaker never loses. Like, , they employ a lot of actuaries, and actuaries are just bookmakers, right?

Bob Herman: Yeah. The actuaries, they are the, the very smart people that analyze, like, how much care everyone’s getting and how much they can predict that that will go up next year. , and they’re pretty good at it. And, you know, obviously the past couple years they were less good at it, but They know if there is a bad year, they can easily adjust the premiums to make up for that bad year. There is no, there’s no multiple years of losing money in health insurance. That, that just doesn’t happen

Dan: Unlike, unlike the rest of us. Yeah. So, if you’re really big, you’re spreading the risk out across a whole bunch of people, and you have reserves, and you have long-term plans.

 And if you’re a tiny little business you don’t have all of the tools to kind of sock money away for something or pull money out of your budget someplace else. Is that, is that basically the, the deal?

Bob Herman: I thi- yeah, I think you have it spot on. If you’re a big company, you can weather these things better.The more people you have, the more money you have to pay out when someone does have to file some kind of claim.

Dan: So but so what did your reporting show you about what small businesses are doing instead and what workers are doing instead?

Bob Herman: Yeah. I mean, none of it is ideal, right? ‘Cause, like, m- a lot of small businesses, they… The ones that I spoke with, and I think this is generally true, like, they wanna offer health insurance. And when they can’t do that, some are just saying, like, “You’re just gonna have to figure it out yourself,” which is, like, it’s a great way to lose an employee, right? Like, “Oh my God, I don’t have the safety net anymore.”

Others are doing, you know, maybe giving their employees extra cash that they can say, “Hey, go buy a health plan on the ACA marketplace.” And you know, it’s not ideal because if you think, you know, when, if you have a employer plan, usually it’s, you know, there’s a, a pretty big network or there’s, like, lower out-of-pocket costs, and when you go to the exchanges, it is a world of difference.

 Like, your doctor may or may not be in-network. Out-of-pocket costs and deductibles are generally much higher, and it’s just, it’s a completely different product. 

Dan: It’s worse. That what you find on the exchanges as an individual is worse than what you’d

Bob Herman: It is. 

Dan: I, I have, I, I, I know this firsthand. Like, the first episode of our podcast, I’m shopping on the exchange. I’m like, “This is bad.”

Bob Herman: Yeah, and like, don’t get me wrong, the ACA provided some kind of baseline level of protection for people who would otherwise be uninsurable. Like b- like, it’s crazy to think about 20 years ago, if you had some kind of preexisting condition, you just couldn’t get insurance. Like, sorry. And, um, but, uh, like the ACA plans are, they’re rough.

Like, it, like it’s, it almost… Like, if you have a $9,000 deductible, is that even insurance at that point? I think that’s a fair question to ask

Dan: And, a- and just to zoom out from there, like that chart you found, the one that showed smaller employers are down to just like 60% offering health insurance, it, it also showed that for larger employers, that number hasn’t changed much, right? It’s like still like 97%.

Bob Herman: Yeah, it’s, um, I think this question’s important because, um, it, it does kind of help explain the economy in terms of haves and have-nots, right? Where the biggest companies are always gonna be able to offer health insurance if they really want to. They just, they have the money to do it. Small businesses, like, we’re living in the shift right now where small businesses are not thriving anymore in terms of offering health insurance, . Well, guess what? Like, I don’t s- foresee this reversing course anytime soon. Ask any small business, and more of them are gonna be like, “You know, my time is, like, up.”

 And, you know, is it, does this, does this spur companies to shut down? I don’t know. Like, it’s totally plausible. Um, it’s not good. It’s not good for the economy, and it, there was even a recent survey that shows that it’s not good for workers either. Like, a lot of people just stick in their jobs, jobs that they hate, because they’re just doing it for the health insurance.

 Like, what kind of economy is that where you’re doing something, you’re collecting a paycheck really to just also get health insurance? It’s not, doesn’t feel particularly productive. So, like, these are all problems that are happening right now

Dan: The, I, I saw that survey and you wrote about it. Like twenty four percent of people in that survey said, “I would leave my job except for the health insurance.” A quarter of people

Bob Herman: Yeah. And what a term, right? Job lock. Like it’s, it’s this well-known economic term, job lock. Like you’re s- you’re locked into your job not because you want to, because, but because you feel like you need to. It’s, 

Dan: And you dug into some of those numbers. You were like, “Yeah, and job lock does not hit all people equally,” right? That people are… Who’s, who’s more vulnerable to job lock?

Bob Herman: It’s, it’s oftentimes it’s people who have more chronic health conditions, right? It’s like, “Oh my God, I know I’m going to be a user of my health insurance.” So like, that makes more s- like especially women because, um, you know, especially if, if you’re planning on having a baby or if you just have any kind of chronic condition, it’s like you are… If you know you’re gonna be using your health plan, you can’t afford to leave your job even if you think it sucks

Dan: , you said at the top of our conversation that, you know, this system is collapsing and that, that health insurance isn’t, employer health insurance is not the kind of robust product we thought it was. And not just for small businesses, even though it’s more obvious for them. But you did report this spring briefly on a survey that said, like, some large number of CFOs were like, “Yeah, we didn’t hire people,” or, “We raised our prices,” uh, because of the cost of health insurance, right?

Bob Herman: Yeah, this is still affecting larger businesses, and it’s happening in all the usual ways that we’ve seen over the past, you know, two decades. It’s making deductibles higher for employees. It’s making them contribute more from their paychecks. It’s changing the health plans. And, you know, I, I just spoke with someone the other day. They said that their out-of-pocket max, it’s the term like after you reach this amount, you don’t have to pay any more for the rest of the year, like it doubled. Like that is a health benefit design change where it actually functions like a wage cut too, right? So th- big companies will always be able to do it, but they have been making changes, and most of the times it just means that the worker and their dependents are taking it on the chin somehow.

Dan: Making health insurance worse. So, I mean, there’s a big story that’s just coming out right now: Did you see the story that Disney is saying, “Actually, your spouse can’t be on your plan anymore if they have an offer from their employer”?

Bob Herman: Yeah, , Disney’s basically saying if your spouse has an offer of insurance through their own employer, they have to take that. They can’t join the Disney plan, which is just, honestly, it’s batshit crazy.

For a company that is, like, supposed to be very family-friendly, this is a very anti-family-friendly thing that they’re doing

Dan: The analysis that I saw was like, look, uh, who chooses our insurance when they have an offer from their insurance? It’s somebody who thinks our insurance is better and is, and thinks they’re likely to use it.

Bob Herman: Right. 

Dan: We think we’re gonna be paying out claims. 

Bob Herman: Right. Yeah, I mean, if you think about it, um, if, if you are sick and you know you’re gonna use insurance, you’re gonna choose the plan that, uh, that offers you more protection. Um, so I mean, like actuarily, like it makes sense. Like they’re, they, they have data showing that like when people join or when dependents join the plan, it is costing them more money, and now they’re going to actively stop it. Like if, if the entire social fabric of employer-based insurance is you, if you have a job, you can get an offer of insurance and your, you and your family can join it, even that is starting to unravel. Like what happens if every other employer did this?

Dan: Yeah, it sounds like the idea you started with — that big employers will keep offering health insurance — they’re not gonna walk away but it sounds like you’re reconsidering this?

Bob Herman: I am kind of reconsidering, and honestly, it’s the GLP-1s that have really started making me reconsider this. Like, Pepsi just this week said, “We’re not offering GLP-1 coverage for weight loss anymore for our employees.” Like, it’s not to say, like, that big… I still think big companies are always gonna offer health insurance, but e- but something like GLP-1 coverage, where it is o- so much money and so many people are using it, 

[00:29:46] Even for that, they’re saying, “No, we can’t do it anymore.” they’re still gonna offer coverage that will, that will try to attract people that they wanna attract. But stuff like this shows that, and, like, it is very clear the employer-sponsored health insurance system is unraveling more than perhaps I’ve ever seen.

Dan:  And yet: The experts Bob talked to all said, they don’t expect this system to change anytime soon.  And Bob ended up with some pretty clear ideas about just why that is. That’s coming right up.

This episode of An Arm and a Leg is a co-production of Public Road Productions and KFF Health News. That’s a nonprofit newsroom covering health issues in America. It’s a newsroom full of superstar reporters; we are honored to work with them.. 

Dan: The sense I got, you know, from your reporting is it, like, big employers aren’t happy about it. They’re, they’re mad. Um, they’re unhappy, but that this system is not likely to go away, So, if everybody’s like, “This sucks,” why doesn’t somebody do something? And you had, like, you had a kind of analysis of like, who’s getting things out of it. Who’s benefiting from, from the way things are?And who would get hurt if, if things changed?

Bob Herman: Getting rid of the employer sponsored health insurance system is just vehemently opposed by big business. They know, especially the largest businesses, if they offer an attractive health plan, they could get anybody they want.And then going back to the job lock, those people could also stay with them for a long time because they know that they have the health plan. Um, and the, the largest tax break in the entire code is employer sponsored health insurance, so it’s great for, you know, middle and upper class p- you know, people. It’s great for the businesses. They don’t… Like, nobody pays any taxes on it. 

Dan: I was really struck by the note that it’s the biggest, it’s the biggest tax break in the entire tax code, , we’re talking hundreds of billions of dollars that otherwise would go into the federal kitty that don’t. Um, so businesses, they see all of these, things that are beneficial to them, and even though it costs them so much money, it is not worth giving that up. like, “We, we still have way too many advantages from it, even though it costs us an arm and a leg.” You had a specific example, but like the Affordable Care Act was, part of its design was like super suped up, workplace health plans would incur a tax, and that this did 

Bob Herman: Yes. I, I don’t know if you remember that debate, Dan, but it wa- it was called the Cadillac tax, and it was this idea that, you know, if it’s a really, really super generous plan, we’re gonna start to tax a little bit. Everyone lost their minds about it, and it was across the board. It was businesses, it was unions, who obviously fight very hard to, you know, to, to negotiate for their health plans. It was just universally reviled. But the idea was we need to start taxing these. It went terribly. It got killed, and that w- it was honestly, it was a pretty modest change, and look at, look what happened there

Dan: A- and so I think what, what that example shows is there are people with something to lose, and then of course there’s all the people who, uh, you know, make money in healthcare, not just insurance companies, right? 

Bob Herman: Yeah. The healthcare industry is very powerful. If you look at like, like lobbying dollars, like healthcare companies and their trade groups are always at the top. And like, yeah, they want inertia. As they, you know, vacuum up another, you know, $6 trillion this year and exponentially more next yearIt is a feeding frenzy. And again, this was, this is money that otherwise would be in your paycheck.

Dan: Yeah. I mean, it’s just one of the things I think about of like, we become aware of how much things cost, a lot of us, when, like, we get a giant bill, or people we know, and we’re like, “That’s wild.” But as what you’re reporting is showing, like, no, all of this wildness is paid by all of us , a lot of us get insurance from our jobs, that’s money that could be our wages. We’re paying it there. Um, in places where the government pays for healthcare and it, we are paying that through our taxes. Um, and that is a part that I don’t think, I get to enough on this show, is that like, we’re vulnerable individually, but we’re also each of us individually paying a collective price.

Bob Herman: I remember years ago I was interviewing Don Berwick. He used to be the CMS administrator, uh, during President Obama’s term for a short while, and he made the good point that was like, workers pay for every dime of healthcare in this country, either through your wages or through what is owed to you through compensation or through taxes. Um, and I think if you, if your listeners just think of it that way, it’s actually pretty simple. Like, we’re all paying for this. It just doesn’t, it might not seem like it, but that is the reality

Dan: Um, this is a little bit risky, uh, just for our emotional health, but like, as a parent, as you report on these things, do you think about your kids as adults navigating an economy that’s another 20 and change years along this path?

Bob Herman: It’s, oh yeah. I mean, I’ve, uh, I, I don’t know. Maybe a lot of parents are worriers. I’m one of them. , I think about, like, my kids when they eventually have to go off our health insurance, right? When they have to find their own, and, you know, maybe they have their own healthcare needs at that point and they have to find something. Like, is it gonna be affordable for them? Are they gonna be one of those people who gets job locked, where they’re, they find a job but they absolutely hate every minute of it because they’re just doing it for the health insurance? Um, yeah. I, I mean, 20 years from now is a long time. Like, costs aren’t going down, and how will it affect their, you know, basic, uh, standards of living?

I have no idea. I, I mean, it’s hard not to think about it. Um, but it is far in the future, and I think that’s what also prevents people from changing things. Like, we know it’s bad, it’s gonna get worse, but, like, you know, when it’s that far in the future you can’t really address it right now. But I think that’s the perfect time to address, is before it gets so bad that our own kids can’t even, you know, afford their rent or their groceries or whatever else

Dan: I’m, I’m reminded, right, of the saying like, “The best time to plant a tree is 30 years ago, and the second best time to plant a tree is today.”

Bob Herman: Today. Exactly right 

 

Rachel Bernier-Green: I’m a little anxious about what we’ll be paying, but it, you know, it’s not keeping me up at night.

Dan: Back on the South Side of Chicago, Rachel Bernier-Green tells me she’s on track to bring insurance back for her team in 2027. She says changes they made to their business strategy last year have been paying off, so she’s got the money lined up

Rachel Bernier-Green: I mean, we hope that there are not, you know, more sky-high increases because yes, they do drastically, impact, um, our ability to operate the business But, ?I know that we’ll be well positioned to absorb the cost

Dan: as I, I’m preparing for today’s reporting, I’m like, “Oh yeah, this would be a good time for me to email our insurance broker and be like, ‘Hey Kurt, so what are we looking at for next year? Uh, I think it’s gonna be bad.’” And he’s like, “It’s gonna be bad.” He thinks for the plan that we’re on, which because of our needs for networks and stuff, is we don’t have a whole lot of choices. He’s like, “Yeah, you’re looking at like 14 to 18%, I think, for the next year.” 

Rachel Bernier-Green: Yeah. Yep Yeah. And, and the crazy thing is, like, I’m… Which sounds obscene, but I’m thinking is between 20 and 25%, um, that we need to be prepared for jumps of that magnitude. And I hope that that is not the case, but that’s what we are building into our, um, our models moving forward

Dan: And are you advising clients the same way?

Rachel Bernier-Green: Yeah. Yeah

Dan: I’m curious about, um, what it was like reading Bob’s story. What was it like, I mean, whether it was surprising or not, like what was it like seeing all of that kind of put together?

Rachel Bernier-Green: Oh, I was, um, just like silently cheering, um, because those are the, uh, exact conclusions that I, you know, I can’t inform the conclusions that he reaches, but that is exactly where, um, where I am. That the system is fundamentally broken and it is harming people in re- irreparable ways and that we need a significant overhaul,

Dan: Amen to that. Which is the thing about a story like this. On the one hand, it’s full of terrible news. On the other hand: Most of us — maybe all of us — are already experiencing the effects of all this terrible news. And I think it’s helpful, it’s good, to see it all tied together. To know:  We’re not alone. We’re not imagining things.  The whole system truly is completely broken — and as bob says, continuing to actually crumble.  

Even if we don’t have a *solution*, it’s good to know what we’re up against, to peel back the curtain.  

Next time on An Arm and a Leg, we take another look at Medicare Advantage. And, um… it’s more broken than we thought. 

News anchor: Many health insurance providers are dropping their Medicare Advantage plans.

Female voice: I heard that — I was just in tears.

Female voice 2: I don’t know any way to describe it other than total chaos. 

Dan: I’m hoping that you’re right here with me when I say:  It is so much better to know.  We do not want to get taken by surprise.

This episode of An Arm and a Leg was produced 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. 

Claire Davenport is our engagement producer.

Amanda Boyd is our Operations Manager. Bea Bosco is our consulting director of operations. 

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues 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.

An Arm and a Leg is distributed by KUOW, Seattle’s NPR news station.

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor.

They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

Finally, thank you to everybody who supports this show financially.

You can join in any time at arm and a leg show, dot com, slash: support.

An Arm and a Leg is a co-production of KFF Health News and Public Road Productions.

For more from the team at An Arm and a Leg, subscribe to its weekly newsletter, First Aid Kit. You can also follow the show on Facebook, Instagram, LinkedIn, and Bluesky. And if you’ve got stories to tell about the healthcare system, the producers would love to hear from you.

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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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

WAIANAE, Hawai‘i — Native Hawaiians will need to comply with new work requirements to qualify for Medicaid after being excluded from exemptions carved out for other Indigenous groups, an omission that clinicians fear will exacerbate the challenges the marginalized population already faces in getting healthcare.

In 43 states and the District of Columbia, President Donald Trump’s signature One Big Beautiful Bill Act will require most adults to work, go to school or enter a training program, or volunteer for at least 80 hours a month. Native Americans and Alaska Natives are exempt from the mandates, which take effect in January.

Of the nearly 700,000 Native Hawaiians in the U.S., around 47% live in Hawai‘i. Within the contiguous United States, California, Washington, Nevada, Texas, and Oregon have the largest populations of Native Hawaiians.

Hawaiʻi’s Medicaid administrator, Meredith Nichols, said the Centers for Medicare & Medicaid Services didn’t respond to the state’s request to include an exemption for Native Hawaiians but said she believes the decision came down to the population’s lack of recognition as a tribal nation. Hawai‘i has about 390,000 Medicaid enrollees, 15% of whom identify as Native Hawaiian, Nichols said.

“We know that when we’ve asked similar questions in the past, it all comes down to federal recognition,” she said.

Hawaiʻi health administrators met with Trump administration officials in June. Some unsuccessfully pushed to add an exemption to the new law, which would need congressional approval.

White House spokesperson Kush Desai did not respond to requests for comment. In a statement, CMS spokesperson Timothy Foster confirmed that the agency met with 16 health centers in Hawai‘i about Medicaid changes but didn’t respond to other questions.

Barriers to Care

Native Hawaiians face many of the same health disparities as Native Americans and Alaska Natives, including higher risks during pregnancy, higher infant mortality rates, and higher rates of being uninsured than the white population. And in Hawaiʻi, Native Hawaiians have the second-lowest life expectancy among ethnic groups after other Pacific Islanders.

Kapono Chong-Hanssen is the medical director of Ho‘ōla Lāhui, the Native Hawaiian healthcare system on Kaua‘i that also serves the privately owned island of Ni‘ihau, whose 170 full-time residents are predominantly Native Hawaiian. Chong-Hanssen said he anticipates many of his patients will no longer receive the care they need once the new work requirements take effect.

Chong-Hanssen says new Medicaid work requirements will erode the trust healthcare providers worked hard to build among Native Hawaiian patients. (Ashley Mizuo/KFF Health News) Ho‘ōla Lāhui, the Native Hawaiian healthcare system on Kaua‘i, operates out of multiple locations, including its clinic in Waimea on the west side of the island. Kaua‘i and Ni‘ihau were impacted by Hurricane Lowell this week, forcing Ho‘ōla Lāhui to temporarily close facilities. (Ashley Mizuo/KFF Health News)

The new requirements will erode the trust healthcare providers worked hard to build among Native Hawaiian patients, who, in response to historical disenfranchisement, are more likely to disengage and “throw the whole system out” when they run into barriers, Chong-Hanssen said. “It just flies in the face of everything that we’re trying to do.”

Beyond medical services, Medicaid covers transportation expenses when patients travel between islands for care. A round-trip ticket between Kaua‘i and O‘ahu, for example, can cost hundreds of dollars.

Congress placed over 200,000 acres of land in a trust for Hawaiian homesteads in 1921 to bring Hawaiians back to their native lands after the U.S. backed the 1893 illegal overthrow of the Hawaiian kingdom. Nearly 30,000 Native Hawaiians are still waiting for land, while, as of the 2020 census, more than 34,000 people lived on Hawaiian homelands. The homesteads are often far from Honolulu, where most health services are located.

Waianae Coast Comprehensive Health Center primarily serves the west side of O‘ahu, which is home to the island’s largest Native Hawaiian population, near four Hawaiian homesteads.

Waianae Coast Comprehensive Health Center CEO Rich Bettini (right) and Vice President Leinaala Kanana demonstrate how to use pods throughout the campus that connect patients via phone to an employee who will help them submit needed information and applications to the state’s Medicaid program. (Ashley Mizuo/KFF Health News)

The center’s vice president, Leinaala Kanana, said that many of its patients are geographically isolated and that few jobs are available in the area. Patients also have trouble securing transportation to get to work or finding affordable childcare.

The center’s CEO, Rich Bettini, said Hawai‘i’s high living costs and depressed wages have pushed many people into homelessness, creating another barrier to complying with the new Medicaid requirements. Native Hawaiian and Pacific Islanders make up about 60% of O‘ahu’s homeless population. The center estimated about 2,800 of its patients may be affected by the requirements, half of whom are Native Hawaiian.

The annual “cost of living for a family of four in Hawaiʻi on O‘ahu is $100,000-plus. The average income of our patients is under $30,000 a year,” he said. “That is an enormous gap.”

‘Bigger Fish To Fry’

Native Hawaiians face obstacles to being granted the same exemptions as other Indigenous groups. While several federal laws refer to Native Hawaiians as an Indigenous group, they are not among the 575 tribes recognized by the federal government. Federal recognition can be granted either by Congress or administratively through a process established by the Department of the Interior. Native Hawaiians remain divided about whether they would even want federal recognition, with some fearing it would jeopardize their ability to restore Hawaiian independence.

Laws governing Medicaid also don’t acknowledge Native Hawaiians, aside from the 2021 American Rescue Plan Act, signed by former President Joe Biden. In the covid-era law, the federal government fully reimbursed Native Hawaiian health centers for Medicaid services for two years. However, all the qualifying Native Hawaiian health centers were in Hawai‘i, where fewer than half of Native Hawaiians in the country now live.

The federal government fully reimburses Indian Health Service and tribal facilities for healthcare services provided to Native Americans and Alaska Natives. Native Hawaiian healthcare systems instead receive the same reimbursement rate as in the rest of Hawaiʻi.

Waianae Coast Comprehensive Health Center CEO Rich Bettini said Hawai‘i’s high cost of living and depressed wages have pushed many people into homelessness, creating another barrier for Native Hawaiians to comply with new Medicaid requirements. (Ashley Mizuo/KFF Health News)

Keolamaikalani Dean, the CEO of the King Lunalilo Trust, which provides services for Native Hawaiian elders, pointed to the new Medicaid requirements as just one of many federal policies limiting Native Hawaiians’ healthcare.

“It’s horrible as a policy, but there are bigger fish to fry,” he said.

Dean said he’d rather advocate for giving Native Hawaiian healthcare systems the same full Medicaid reimbursement that the Indian Health Service receives. The change would have greater impact on patients seeking care, he said.

Native Hawaiian advocates said they have been overextended as they work to guard against an onslaught of threats to revoke other federal funding by the Trump administration.

In Trump’s proposed 2027 budget, cuts to Native Hawaiian programs cited the group’s lack of federal recognition as a “tribal nation.” The proposed cuts coincide with lawsuits from conservative groups challenging Native Hawaiian education programs and long-standing legislation that provides homestead land to some Native Hawaiians at almost no cost, alleging the programs racially discriminate against other groups.

Papa Ola Lōkahi, a nonprofit that oversees the Native Hawaiian healthcare systems in the state, declined to comment for this article. The group is involved in a lawsuit filed by a conservative group aiming to stop a university scholarship for Native Hawaiians pursuing healthcare careers.

U.S. Rep. Jill Tokuda (D-Hawaiʻi) viewed the exclusion of Native Hawaiians from the exemptions to Medicaid work requirements as an attempt to further erode Native Hawaiians’ Indigenous status, pointing to recent challenges by the Trump administration and lawsuits.

“These are not one-offs,” Tokuda said. “This is a targeted, coordinated attack to undercut the Indigenous status of Native Hawaiians.”

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.