The ongoing debate over the U.S. health system shouldn’t be based on whether the government or the private sector is the dominant player, billionaire entrepreneur Mark Cuban said this week. The bigger issue, he said, is whether the system’s participants are transparent about what they charge and what they pay.

“I’m not opposed to single-payer or universal healthcare at all,” Cuban said Aug. 18 in an interview with KFF Health News. But “when you don’t know all the costs, when there’s no transparency, it’s impossible to determine if it’s a better solution or not,” he said.

Cuban’s remarks came on the heels of primary election victories by progressive supporters of “Medicare for All” — most notably Abdul El-Sayed, who recently clinched the Democratic Senate nomination in Michigan.

The former majority owner of the Dallas Mavericks and a former investor on the hit TV show Shark Tank, Cuban changed the way generic prescription drugs are sold in 2022 by co-founding Mark Cuban Cost Plus Drugs. The website, which posts all its costs and takes a blanket 15% markup, sells thousands of medications, often at deep discounts compared with buying through private insurance plans or self-pay pharmacies.

“We took the transparent path for an industry where there was zero transparency,” Cuban said. “Everybody else prices to the market; we price to what we thought was fair.”

Cuban said that, in thinking about the broader problems facing the U.S. healthcare system, the key is to rebuild trust. “Trust really is a formula,” he said. “Trust equals transparency divided by self-interest.”

One way to build trust, he said, is to give consumers incentives to find the best price for nonemergency health services. Cuban said that means every medical purchase should count toward health insurance deductibles and out-of-pocket maximums, which is not currently the case.

He also advocates breaking up some of the vertically integrated health companies that have grown so large — owning insurers, care providers, and the companies that serve them — that they can dictate their prices. “If you break up these big, huge conglomerates, everything changes. The price of everything drops like a rock,” he said.

But so far, only a few lawmakers have been brave enough to push that goal, Cuban said, citing the Break Up Big Medicine Act co-sponsored by senators Josh Hawley of Missouri, a Republican, and Elizabeth Warren of Massachusetts, a Democrat.

In the end, Cuban said, what matters is not who is running the system but whether all the cards are on the table — in particular, whether the terms of healthcare contracts are public. Whether it’s the government or private businesses doing the negotiating, “if you don’t know how the deals are structured, it’s impossible to negotiate better ones.”

The interview was part of the “How Would You Fix It?” series featuring Julie Rovner, KFF Health News’ chief Washington correspondent and host of the What the Health? podcast.

An abbreviated version of this interview aired Aug. 20 in Episode 460 of What the Health? From KFF Health News: “Headless FDA Gets a New Nominee.”

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.

Evelyn Griffin had led a life out of the spotlight until she testified at the Louisiana Statehouse five years ago and experienced what she called her “great awakening.”

The state health department wanted to add covid vaccines to the school immunization schedule, a move no state has ever implemented. Robert F. Kennedy Jr., then known as a leading vaccine skeptic, had already claimed the covid shot was “the deadliest vaccine ever made” during a poster board presentation at the legislative hearing.

Griffin, a longtime OB-GYN, relied on nearly identical images during her own blistering testimony against the proposal. After the hearing, she expected splashy headlines about Kennedy’s assertions, shifting the public debate over covid policies and vaccines. But that did not happen; one news outlet dismissed him as a promulgator of propaganda. Griffin was shocked.

That is “when I saw how the world worked,” she recalled in a podcast interview. Griffin said she and her husband, a vascular surgeon, decided to take action and “shine light on things.”

Now, Kennedy is the nation’s health secretary, and Griffin holds prominent roles that position her to help carry out his vision.

Last September, Kennedy appointed her to ACIP, the advisory panel for federal immunization policy, where she voted to recommend limiting access to covid vaccines and ending universal newborn immunizations for hepatitis B, steps that a federal judge has blocked. In December, Gov. Jeff Landry of Louisiana, a conservative Republican and an ally of President Donald Trump’s, named Griffin as the state’s surgeon general.

That makes her the top public health physician in Louisiana, which has the worst health outcomes among states.

She is an unconventional choice. Griffin has no background or specialty training in infectious diseases or public health. She is aligned with alternative health movements — including Make America Healthy Again, or MAHA — and has hosted some speakers promoting fringe medical views.

Griffin declined interview requests for this article. “My vision as Louisiana’s surgeon general is to help shift our healthcare system toward preventing disease, not just managing or treating it,” she said in a statement.

Eight months into her tenure, she has yet to make major changes at the health department. She has faced hurdles in her efforts to tighten access to vaccines and limit public health powers, testifying on several bills that legislators rejected.

Still, Griffin’s political rise reflects the gains of Kennedy’s vaccine agenda at the state level, a vital testing ground for laws aimed at eroding government mandates. State officials have enormous power to set health policy and beat back infectious disease outbreaks. While Griffin’s post is largely a bully pulpit, she could spur real change by advising the governor, state health secretary, and lawmakers.

Some public health and infectious disease experts warned that if Griffin eventually succeeded in curtailing the state’s authority, illnesses and deaths could escalate and Louisiana could be hamstrung in a future pandemic. At one vaccine panel meeting last year, she said it was “unclear” whether vaccines were linked to autism, as Kennedy has suggested. When asked by The New York Times, she declined to say whether she believed any vaccines should be mandated for schoolchildren.

“Someone who has expressed the views she has, who’s now in a public policy position, is very dangerous,” said Georges Benjamin, the chief executive of the American Public Health Association.

But Kirk Milhoan, a pastor and pediatric cardiologist who serves as chair of the federal vaccine panel, defended Griffin as an “excellent choice” for surgeon general. “No one should be afraid of Dr. Evelyn Griffin having the heart’s desire to take care of the population of Louisiana,” he said in an interview.

While Griffin is on a learning curve as a political novice, she has signaled big ambitions.

She called for “dramatic transformational change” during a public meeting in January, promising to focus on women’s health, rural health, and the root causes of disease. An accompanying slide presentation said Louisiana would lead through “family, faith, and fearlessness.”

Griffin, 49, often cites her family background in explaining her trajectory.

She was born Ewelina Bulczynski under Communist rule in Poland in 1976. When she was 5, her family defected to a refugee camp in Austria before immigrating to Canada. She and her two brothers later came to the United States to practice as physicians. She has credited this history with giving her a “different perspective” as a doctor and influencing her skepticism of government mandates.

“My parents escaped Communist Poland so that we could come here for the freedoms, such as medical freedom, that this country has,” she told Louisiana lawmakers in 2022.

Evelyn Griffin, Louisiana’s surgeon general, and her husband, Joseph Griffin, attend a wellness event sponsored by the Northshore Alternative Health Alliance in Mandeville, Louisiana, in June. (Christiana Botic for The New York Times)

She met her husband, Joseph Griffin, while they attended Ross University School of Medicine, then located in Dominica. After residency programs in New Orleans, they settled in Baton Rouge and raised two children.

People who have known Griffin during her 20-year career delivering babies and treating women described her as a kind, caring, and smart physician. “Patients loved her,” said Francis Dauterive, who worked with her.

In the years before the pandemic, Griffin had noticed a rise in chronic health problems among her patients. She began studying how nutrition and lifestyle choices could treat and prevent illness, and pursued online training in functional medicine. She started an Instagram account filled with images of jackfruit sloppy Joes and vegan jambalaya, her dog lounging on a yoga mat, and her backyard strawberry plants.

She also learned of Barbara O’Neill, a Christian wellness figure popular on social media. O’Neill was barred in 2019 from giving medical advice in Australia after claiming that cancer was caused by a fungus and could be treated with baking soda, and that vaccines caused “an epidemic of ADHD, autism, epilepsy and cot death.” In a 2025 podcast, Griffin called O’Neill a “sage” teacher who was ostracized for focusing on lifestyle solutions to medical issues. She said she kept O’Neill’s advice for a healthy life — including exercise, sunshine, and trust in God — posted on her fridge.

But it was the pandemic that transformed her career. In speeches and interviews, she said she began to question public health guidance and that of her former employer, Ochsner Health, Louisiana’s largest health system, on masking, vaccines, and mandates.

Griffin wanted to share research with colleagues that wasn’t “mainstream” science, as she put it, studies she said were from contacts in Europe on early covid treatments. Griffin was repeatedly rebuffed, she said.

Eventually, she resigned. “I’m going to stick to my principles,” she later recalled thinking. She now works at the Baton Rouge General health system. Ochsner officials declined to comment.

Louisiana had been hit hard by the pandemic. By December 2021, more than 14,000 people had died from covid. That summer, the Delta surge had killed six pregnant women there over two months, and maternal health organizations were urging vaccination.

But in her testimony to lawmakers that December, Griffin had questioned the vaccine’s safety after health officials had reported rare adverse reactions. She invoked a public health catastrophe: The drug thalidomide, prescribed during pregnancy in Europe (and tested in the United States) in the 1950s, had left thousands of babies with missing or malformed limbs. She also reminded lawmakers of the Nuremberg trials, where Nazi collaborators had been sentenced to death for medical experimentation.

“So everyone has to be on notice when making these types of decisions,” Griffin said, looking at the politicians. The state later dropped plans to require covid vaccines for students.

Griffin and her husband have since embedded themselves in Louisiana’s right-leaning alternative health communities. They have espoused views that, amid the swirl of social-media-fueled wellness trends, pandemic backlash, and widespread dismay over Americans’ poor health, have become ascendant in the second Trump presidency.

Jay Luneau (top center), a Democrat in Louisiana’s Senate, questions Griffin in May about a bill to prohibit businesses and schools from mandating new vaccines or other medical interventions. (Christiana Botic for The New York Times)

Griffin returned to the state Capitol over the next three years to testify for favored causes, including bills supported by Health Freedom Louisiana, a group aligned with Kennedy. One would have expanded access to ivermectin, an antiparasitic drug popular among vaccine skeptics, though numerous studies have shown it is ineffective in treating covid, and another would have banned future government health mandates, which Griffin has called “a slippery slope.” Neither got out of committee. She also testified in support of a ban on gender-transition treatments for minors, which became law.

After the U.S. Supreme Court overturned Roe v. Wade in 2022 and Louisiana’s near-total abortion ban took effect, Griffin became an ally of Louisiana Right to Life, the state’s leading anti-abortion group. She recorded videos arguing that the law did not impede pregnancy care. The ban was later found to delay miscarriage treatment and lead to unnecessary cesarean sections, according to doctors and reproductive rights groups.

Griffin and her husband struck up a friendship with Tony Spell, the pastor of Life Tabernacle Church in Baton Rouge, sometimes joining him for Bible study. Pastor Spell refused to shut his evangelical church during the pandemic, leading to criminal charges that were overturned by the Louisiana Supreme Court. Griffin called him “an absolute hero.”

Benjamin Clapper, executive director of Louisiana Right to Life (center left), speaks to Griffin at the Louisiana Capitol in May. (Christiana Botic for The New York Times) Tony Spell, the pastor at Life Tabernacle Church in Baton Rouge, is friends with Griffin and her husband. (Christiana Botic for The New York Times)

She has spoken at annual health freedom gatherings on the church’s sprawling grounds and launched her own wellness events there two years ago. Guests have talked about backyard gardening, naturopathic medicine, the benefits of doulas and raw milk — a passion of Kennedy’s — which recently sickened nearly a dozen Louisiana residents.

One speaker, an OB-GYN, said contraception encouraged abortion. Another, an ophthalmologist, questioned the safety of wireless technology, as has Griffin. Quoting O’Neill, the Australian wellness figure, Griffin warned the crowd to “stay away from sunscreen,” adding there were “lots and lots of chemicals” in it.

Spirituality is “the foundation for health,” she said during the event in 2025, and some of her speakers have presented faith in Jesus as essential to being healthy. At the 2024 gathering, Sean Troxclair, an internist who is now her deputy, said that when he was “injured” by a vaccine, “I got with Jesus.” He added, “If you’re not with him, no matter what you do, you’re not going to get better.”

In written comments to the Times, Griffin said that faith was not a prerequisite for good health, and that she “may not share every perspective presented” by her speakers.

Griffin’s appointment is among Gov. Landry’s wider efforts to move Louisiana, already a deeply red state, further to the right. He has supported a crackdown on doctors who mail abortion pills to Louisiana patients and a lawsuit against the Food and Drug Administration to stop the practice nationwide. The U.S. Supreme Court said the pills could still be sent by mail while the FDA case continues in the lower courts.

The governor’s first appointee as surgeon general, Ralph Abraham, another supporter of Kennedy’s, blocked his staff from promoting any vaccines amid an outbreak of whooping cough that killed two babies.

Griffin has begun her tenure more quietly, seeking ties with the state’s medical community while trying to find her place in a health department hierarchy where the secretary still wields much of the power.

Griffin and her deputy, Sean Troxclair (right), attend a women’s wellness event at the Louisiana Capitol in May. (Christiana Botic for The New York Times)

For her staff, she’s recruited figures from wellness and vaccine-skeptical circles, including Troxclair and Kathleen Willis, an internist who has questioned the safety of the childhood vaccine schedule, as has Trump.

A surprising presence in the department is Griffin’s husband, whom she’s called “like-minded.” Though he is not employed by the agency, he has joined her appointments with state and federal officials and participated in department meetings, sometimes providing feedback or asking questions, according to two people present at the sessions. Griffin has also placed him on a Medicaid advisory subcommittee. Griffin said in a statement that he was “not involved in formal decision-making.”

Bruce Greenstein, the state health secretary, introduced the couple during a public meeting in January, saying, “We basically get two doctors for the price of one.” In May, Griffin’s husband joined the governor on a contentious trip to Greenland, which Trump has periodically threatened to control.

Griffin’s beliefs represent a shift away from public health policies that prioritize the protection of the wider community in favor of ones that prioritize individual choice. Like Kennedy, she has said this is necessary to restore faith in public health systems battered by the anger over pandemic restrictions.

Such a reframing of the government’s role would upend long-standing public health principles and risk harming society’s most vulnerable, said Paul Offit, director of the Vaccine Education Center at the Children’s Hospital of Philadelphia.

“Are we in no way responsible for people who we are going to sit next to on a bus or get into a crowded elevator?” he asked. “Do we have no sense of responsibility to other members of society?”

Florida’s former health secretary and surgeon general, Scott Rivkees, whose successor tried to roll back vaccine mandates, said rising vaccine skepticism was already contributing to outbreaks of measles and whooping cough. “This is something that our country will regret as we start seeing our sons, daughters, neighbors, friends, cousins, pay the price,” he said in an interview.

Even though Griffin has allied herself with some lawmakers in the Republican-controlled legislature, she testified on three bills this year that failed to proceed. One would have created new informed-consent requirements for vaccines — including banning mothers from agreeing to vaccines for 12 hours after giving birth, when Griffin said hormones and other factors could impede their thinking.

Another would have significantly limited the government’s ability to require vaccines, testing, or masks in a future outbreak, mandates that Griffin testified infringed on individual rights and were discriminatory. A third bill, her own proposal, would have given her office sweeping access to all medical records in the state, which are now protected by medical privacy laws.

Gov. Landry did not publicly push for the measures, a sign that they may not be priorities for his administration. A majority of Louisiana voters support school vaccine mandates, according to polls by Louisiana Families for Vaccines and the Center for Individual Freedom. Most proposals to weaken vaccine laws also failed in other states this year.

Since her appointment, Griffin has traveled the state to meet with residents. In June, she and her husband wandered through a wellness event, sponsored by the Northshore Alternative Health Alliance, in Mandeville. She had been invited to give the keynote address by Abigail Licatino, a member of Health Freedom Louisiana who has said that vaccines cause “most” autism.

Booths featured local farmers, reiki practitioners, functional medicine doctors, chiropractors, spiritual healers, and purveyors of peptides, supplements, and IV treatments. The event represented some of the “holistic approaches” Griffin said she planned to highlight as surgeon general.

In speeches before her appointment, Griffin had offered a far-reaching vision. While conventional medicine would still play an indispensable role, she said, the current health system was failing Americans and would “collapse.” The health freedom and wellness movements would help show “the path forward.”

The New York Times’ Kitty Bennett, Sheelagh McNeill, and Kirsten Noyes contributed research for this article.

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.

Heidi Overton, a physician and White House domestic policy adviser, is President Donald Trump’s choice to be the next head of the Food and Drug Administration. Overton, an abortion opponent and supporter of Trump’s proposed changes to the childhood vaccine schedule, has made enemies while working on health policy from the White House and could face some tough questioning from senators.

Meanwhile, prescription drug prices are dropping for some people, and the wholesale retailer Costco is entering the Medicare market. Still, overall, the problem of healthcare being too expensive remains stubbornly hard to solve.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, Shefali Luthra of The 19th, and Alice Miranda Ollstein of Politico.

Panelists Joanne Kenen Johns Hopkins University and Politico @JoanneKenen @joannekenen.bsky.social Read Joanne's bio. Shefali Luthra The 19th @shefali.bsky.social Read Shefali's stories. Alice Miranda Ollstein Politico @AliceOllstein @alicemiranda.bsky.social Read Alice's stories.

Among the takeaways from this week’s episode:

• Trump’s selection of Overton to lead the FDA is prompting concerns from a diverse crowd of skeptics that includes Sen. Bill Cassidy (R-La.) and adherents to the Make America Healthy Again movement. Her lack of managerial experience and history of controversial writings could be liabilities during the confirmation process, though Trump has a decent track record of clearing nominees through a hesitant Senate.
• Grant money continues to be held up at the National Institutes of Health pending political reviews, and new reporting sheds light on “zombie programs” at the Centers for Disease Control and Prevention, where money has been appropriated but there’s no staff to use it. Plus, the trend of declining childhood immunizations continues, with vaccine exemptions for kindergartners jumping to another high.
• New data shows the largest drop in prescription drug prices since the 1960s, and while the Trump administration is taking credit, it’s unclear what exactly caused it. Meanwhile, the federal government is investigating major health companies for allegedly dodging taxes or engaging in anticompetitive practices. And the wholesaler Costco is getting into the health insurance game, partnering with a nonprofit insurer to provide Medicare Advantage or Medigap plans in a few states.

Also this week, as part of the “How Would You Fix It?” series, Rovner interviews billionaire businessman Mark Cuban, who has already reshaped the generic drug market and now has his eye on the rest of the healthcare system.

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

Julie Rovner: Mother Jones’ “The Orwellian Company Behind ICE’s New Electric Shock Gloves,” by Sophie Hurwitz.

Shefali Luthra: The 19th’s “Tik Tok’s Fake GLP-1 Market Preys on Women Trying To Lose Weight,” by Barbara Rodriguez.

Alice Miranda Ollstein: The Texas Observer’s “Texas Maternal Mortality Committee’s Next Report Will Skip Post-‘Roe’ Deaths. Lawmakers Suspect Political Influence,” by Mary Tuma.

Joanne Kenen: Politico’s “AI Slop Is Swamping a House Office That Drafts US Laws,” by Owen Dahlkamp.

Also mentioned in this week’s podcast:

• NOTUS’ “‘Graveyard for Grants’: NIH Is Holding Up Medical Research Funding,” by Paige Winfield Cunningham.
• The Associated Press’ “The CDC Has Zombie Programs. Congress Funds Them, but Few People Are Left To Do the Work,” by Mike Stobbe.
• KFF Health News’ “Kennedy’s Quiet Hunt for Autism Culprits Stalls as Trump Orders Baseless Changes to Childhood Shots,” by Amanda Seitz and Stephanie Armour.
• The Wall Street Journal’s “Costco Sells Vacations, Gas and, Soon, Medicare Plans,” by Anna Wilde Mathews.
• Stat’s “Epic’s Alleged Anticompetitive Practices Under Scrutiny From Federal, State Investigators,” by Casey Ross and Brittany Trang.
• Stat’s “UnitedHealth Faces IRS Probe Over Potential Tax Avoidance,” by Bob Herman.

Credits Zach Dyer Audio producer Taylor Cook Audio producer Emmarie Huetteman Editor

Click here to find all our podcasts.

And subscribe to “What the Health? From KFF Health News” on Apple Podcasts, Spotify, the NPR app, YouTube, Pocket Casts, or wherever you listen to podcasts.

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.

Northwestern University economist Chuck Manski studies decision-making amid uncertainty. That prepared him better than many other cancer patients to decide whether to stay on an immunotherapy treatment that was making him very ill.

For six months in 2022, Manski received monthly infusions of nivolumab to fight advanced melanoma. The drug ruined his thyroid gland, he said, requiring him to go on a special medication for the rest of his life, and caused severe dryness in his eyes, lips, and mouth. The FDA’s protocol for the drug called for an entire year of treatment, but Manski said his oncologist couldn’t explain why. It’s FDA-approved, “so that’s what we use,” she said.

By that point, Manski showed no cancer signs or symptoms, and after reading a lot of medical journal articles, he concluded that the intense side effects probably meant the treatment had done about all it could do.

“She couldn’t tell me a year was the optimal dose. Nobody could,” he said in a June interview from Spain, where he received an award for his economics work. “So I made my own diagnosis. I took myself off.”

Manski’s decision was in line with what doctors in Canada, Israel, Sweden, and other countries were already doing: giving lower doses of nivolumab, sold under the brand name Opdivo, and of a similar drug, pembrolizumab (Keytruda), or giving them for shorter periods or over longer intervals than the FDA recommended. In India, oncologists found that as little as one-twelfth of the labeled dosage of nivolumab had a powerful impact on several cancers.

“There is incredible uncertainty in drug dosing,” Manski said.

His experience impelled him to join an informal yet determined community of researchers, doctors, and patients pushing for extra studies to help patients and doctors find the right dosage for an array of cancer drugs. They point to evidence suggesting that taking smaller doses of some cancer drugs, or remaining on them for shorter periods, could save billions of dollars and prevent some of the worst side effects.

In a recent KFF survey, 43% of U.S. adults said they had skipped their medication in the past year because of cost. A Vanderbilt University study of Medicare enrollees released in 2022 found that 30% of cancer drug prescriptions went unfilled at the pharmacy.

But dose-optimization studies rarely occur after the early stages of a drug’s development, or once it’s on the market. By then, few parties in the U.S. healthcare system — beyond patients — have a stake in learning that a lower dosage could work as well while causing less harm.

Pharmaceutical companies have shown little interest in dialing back recommended dosages. Once they set the price for a drug, the more sales, the more profit. One study that examined 29 expensive cancer drugs estimated that if minimum necessary dosages had been used in 2024, the U.S. healthcare system could have saved roughly $31 billion.

“Decisions aren’t always made with the best needs of the patients in mind. The bottom line is another reason,” said Matthew Goetz, a breast cancer researcher at the Mayo Clinic Comprehensive Cancer Center.

Doctors in other countries have been giving patients lower doses of nivolumab or giving them for shorter periods or over longer intervals than the FDA recommends. (George Frey/Bloomberg via Getty Images)

Merck last year sold nearly $32 billion worth of pembrolizumab, a drug that’s FDA-approved for more than 40 cancer conditions. It accounted for almost half of Merck’s drug sales. Bristol Myers Squibb, meanwhile, brought in $10 billion from nivolumab, which works similarly to pembrolizumab in tweaking the immune system. Three important but often toxic breast cancer drugs — Ibrance, Verzenio, and Kisqali — boosted revenue at Pfizer, Eli Lilly, and Novartis by $4.1 billion, $5.7 billion, and $4.8 billion, respectively.

Pembrolizumab is usually prescribed at a fixed dosage; nivolumab is sometimes prescribed at a fixed dosage, sometimes based on the patient’s weight. If the patient is dosed less than what’s on the label, drugmakers generally get less money. And they aren’t the only ones who lose out.

Through a federal program known as 340B, created in 1992 to subsidize the treatment of low-income patients, hospitals that treat a certain percentage of low-income patients can buy drugs at a steep discount, while charging insurers or patients more. For Medicare patients, doctors are paid an additional 6% of the drug’s average price for each infusion.

From 2010 to 2024, cancer drug revenue to doctors and hospitals increased from about $9 billion to nearly $36 billion, according to research by Aaron Mitchell of the Memorial Sloan Kettering Cancer Center. About half those profits came from immunotherapy drugs like pembrolizumab and nivolumab.

“Pembrolizumab is the lifeblood of American hospitals,” said Mark Ratain, a professor of medicine and chief hospital pharmacologist at University of Chicago Medicine. “That’s why you don’t see hospitals in this country running to do trials that test lower doses.”

Mark Ratain, a University of Chicago oncologist and clinical pharmacologist, battles what he sees as unnecessarily high dosages of high-cost cancer drugs such as Keytruda and Opdivo. (Taylor Glascock for KFF Health News)

Merck spokesperson Julie Cunningham said the drug’s dosage recommendations were based on extensive testing. “In a life-threatening and challenging disease such as cancer, it is critical that the dosing for a cancer therapy is established through well-designed clinical trials,” she said. “Changes in dose or duration that have not been similarly studied may potentially compromise the therapeutic effect.”

Still, some oncologists start their patients off slowly on any of a variety of cancer drugs, although there may be concerns about lawsuits by a patient or their survivors over a prescription of lower-than-labeled dosages.

Kathy Miller, a professor of oncology at the Indiana University School of Medicine, routinely starts metastatic breast cancer patients with 400 milligrams of Kisqali daily for three weeks (with one week off), rather than the 600 milligrams recommended on the label. Sometimes patients ask for the standard dosage.

“I have to tell them, ‘I don’t want to kill you,’” she said.

Insurers routinely challenge her lower-dosage prescriptions, Miller said, presumably because price rebates from the drug company are set to the standard dosage. To avoid endless phone battles with insurers, she prescribes 600 milligrams but tells her patients to take only two of the 200-mg pills and save the third for the next cycle.

Follow the Cures — And the Money

On May 31, at the annual meeting of the American Society of Clinical Oncology, or ASCO, at Chicago’s McCormick Place convention center, most of the audience of 8,000 rose in a prolonged standing ovation for the experimental drug daraxonrasib. Patients with pancreatic cancer who took the drug, according to the study presented that day, lived nearly twice as long — a median of 13 months — as those receiving chemotherapy.

The next day, in a slightly smaller hall, Amol Patel, a medical oncologist from New Delhi, discussed studies in various cancers in which 20- or 40-mg doses of nivolumab biweekly — one-sixth or one-twelfth the recommended dosage — gave Indian patients several months to a year longer survival than patients who underwent chemotherapy, and with fewer side effects.

Fewer than 100 people attended Patel’s talk.

The ingenious development of daraxonrasib was big news, since pancreatic cancer has been a death sentence until now. But from a global perspective, the news out of India might be just as important.

At the ASCO meeting, “the focus is always on the shiny new drug,” said Daniel Goldstein, an oncologist and drug policy researcher at the Rabin Medical Center in Israel who has fought for a decade, with some success, to lower pembrolizumab dosages in hospitals there and in other countries. “It can be quite lonely to be us,” he said, adding that he’s seen increasing appreciation of his work.

The data from India offered a glimpse of what could be. However, the studies Patel referred to compared ultralow-dosage immunotherapy to older chemo drugs; none compared ultralow doses against standard nivolumab or pembrolizumab treatments. In India, this would be a sterile exercise, because full-dose treatments are beyond the reach of any but the very wealthy, said Vanita Noronha, an oncologist at Tata Memorial Hospital in Mumbai.

Bristol Myers Squibb, or BMS, has a program to make its drugs available in lower-income countries. But the company hasn’t been involved in the lower-dose nivolumab trials and, in a statement to KFF Health News, said the evidence suggested that nivolumab at a lower dosage or shorter duration harmed patients.

While not all U.S. oncologists agree with BMS’ assertion, the Indian data is, to most, a mere curiosity. “Can we really give 20 milligrams as opposed to 240?” asked Jessica Bauman of the Fox Chase Cancer Center in Philadelphia. “The only way we know for sure is a randomized study between the low dose and the highest.”

And such trials are unlikely to occur. That means only poorer countries are going to host “this groundbreaking research,” said Ratain, who is also a cancer doctor at the University of Chicago Medical Center. “The Indians may have better immunotherapy than we do.”

Clinicians in Europe, where maximizing healthcare dollars has long been a priority, have taken a middle course, studying lower, but not ultralow, doses of immunotherapy.

Pulmonologist Michel van den Heuvel at Utrecht University is leading a study comparing the standard nivolumab dosage for lung cancer patients with one that is as much as 50% lower. He also considered giving the low doses half as frequently, but that would have raised ethical concerns and led to a more cumbersome research protocol, van den Heuvel said.

In the United States, researchers led by a group at the Dana-Farber Cancer Institute are taking another tack: evaluating whether patients who’ve done well on 27 weeks of pembrolizumab can stop taking it, rather than doing the additional six months per FDA protocol.

At the Veterans Health Administration, which has more leeway in testing money-saving medical procedures, doctors saved $1.5 million, about 10% of the previous pembrolizumab cost, over two years at three Veterans Affairs hospitals where they implemented a pilot program to dose patients less frequently, said Garth Strohbehn, a University of Michigan oncologist who also works at the VA.

It saves money and requires fewer visits for veterans who often live hours from the hospital, he said. “It also helps other patients because it opens more slots for infusion.”

Julie Gralow, ASCO’s executive vice president and chief medical officer, has made testing dosage a priority. She’s working with scientists in India on an ambitious clinical trial to compare standard nivolumab with four lower dosage levels.

She’s also leading an $11 million trial, supported by the federally funded Patient-Centered Outcomes Research Institute, to see whether breast cancer patients can be effectively started on lower doses of the drugs Kisqali and Ibrance, which, along with Verzenio, are in a class of key breast cancer drugs known as CDK4/6 inhibitors.

“We want to maintain efficacy. But we also want patients to have excellent quality of life,” she said. Especially for patients with advanced cancers, where absolute cure is unlikely, “it’s our job to make sure we’re not compromising quality of life with higher doses that are unnecessary.”

In 2021, at Ratain’s urging, Richard Pazdur, who led the FDA’s cancer drug division for many years, launched Project Optimus, intended to get companies to conduct dosing studies that are more precise before launching the large clinical trials they use to obtain FDA approval for new drugs.

The FDA usually can’t compel a drugmaker to conduct dose-ranging studies after a drug is approved, and by law the agency does not influence drug pricing, says Emily Hilliard, a Department of Health and Human Services spokesperson. (Valerie Plesch/Bloomberg via Getty Images)

The agency issued nonbinding guidelines for dosing studies in 2024 and has incorporated Project Optimus principles into the approval process for new cancer drugs, said Health and Human Services spokesperson Emily Hilliard. For example, two dosing regimens were evaluated for each of four lung cancer drugs (fam-trastuzumab deruxtecan, tarlatamab, zongertinib, sunvozertinib), and the lower dose with fewer toxicities was approved in each case, she said.

The FDA usually can’t compel a drugmaker to conduct dose-ranging studies after a drug’s approval, Hilliard noted. And by law the agency does not influence drug pricing, she said.

Future drugs should have better dosage information, Bauman said, but “newer drugs will probably be just as expensive at lower doses.”

Financial Toxicity

Verzenio’s side effects made Allegra Warfield feel so sick, tired, and bewildered, she said, that she considered suicide. She switched to Kisqali, which was tolerable until last September, when coverage of the drug stopped despite her monthly premium payment of $6,000. The cash price for Kisqali was at least $16,000 a month.

After fighting her insurer for three months, Warfield, 42, sold her house and belongings in Palm Desert, California, and moved with her fiancé to Durham, North Carolina, where they’d found what they considered a reasonable insurance plan.

The cancer, the side effects, and the unpayable bills were bad enough. The lack of good answers for her treatment made everything worse, she said.

“I was left to research these medications on Facebook and Reddit. The only people talking about the daily reality of these drugs were other patients,” she said. “But I wanted the studies. I wanted practical guidance.”

Stories like these launched a new life mission for Kelly Shanahan, who was an OB-GYN in South Lake Tahoe, California, until side effects from a breast cancer drug caused her to lose sensation in her hands. Unable to practice medicine, Shanahan became a patient advocate who works with a group called the Patient-Centered Dosing Initiative. In 2021, Shanahan developed profound fatigue (“worse than caring for a newborn baby while being on call in my solo practice”) within a few weeks of going on Ibrance. Lowering the dosage caused her worst symptoms to lift, she said.

After gathering countless anecdotes, her group has approached drug companies seeking data — so far with little success — that might indicate what percentage of patients have needed dosage reductions, and how they fare on lower doses.

“If going down two dose levels cuts effectiveness by 50%, patients need to know that while making decisions. If it doesn’t, they need to know that,” Shanahan said — even if it means “the companies won’t make as much money.”

Shanahan suggested the data could be found in clinical trials and postmarket studies. But if drug companies won’t provide the necessary studies, Manski said, governments should.

“The knowledge to be gained is a common good,” he said.

Manski’s research, focused on how people deal with conditions of uncertainty, helped him decide whether to stay on a melanoma treatment after it caused severe side effects. (Taylor Glascock for KFF Health News)

Has an insurance company or pharmacy benefit manager refused to cover a drug an oncologist recommended or prescribed for you or a loved one because the cancer is unusual or rare and lacks clear guidelines? Click here to contact KFF Health News’ reporting team.

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.

Nurse Crystal Dhooghe is used to dealing with blood and broken bones in the emergency room. But she didn’t expect to witness so much violence against her own colleagues.

“I’ve seen nurses get shoved, pushed, scratched. The biggest one is bitten,” said Dhooghe, who works at Henry Ford Genesys Hospital in Grand Blanc, Michigan.

The prevalence of workplace violence in healthcare has fueled strikes in states such as Louisiana, New York, Pennsylvania, Rhode Island, and Michigan, where Dhooghe and many of her co-workers have been on the picket line since Labor Day last year.

“People will question me and be like, ‘Why are you still working in a place if you’re treated like this?’” said Dhooghe, who gets by on strike benefits and working extra shifts at another hospital. The problem, she said, is that other hospitals aren’t any better. “It’s the same everywhere I go.”

In a statement, Henry Ford Health spokesperson Dana Jay acknowledged violence against healthcare workers is a “national epidemic” and said the health system’s efforts to address the problem include metal detectors, armed security officers trained to make “misdemeanor arrests,” and de-escalation training.

“We have zero tolerance for violence of any kind,” said Jay, asserting the strike is not about safety but is instead “simply an economic strike.”

Nationwide, hospital workers are seven times as likely to be injured on the job due to violent acts as members of the general working population, according to the most recent data available from the Bureau of Labor Statistics. The outcry over workplace violence in healthcare is pitting workers’ demands for better compensation and staffing against hospital operators pressured to cut costs.

‘A Powder Keg’

Violent outbursts are so common that they’ve been dramatized on the popular medical TV series The Pitt. “Emergency rooms right now are like a powder keg,” said Rachel Odes, an assistant professor at the University of Wisconsin-Madison School of Nursing.

In hospitals, a combative or violent patient is known as a “code gray.” Outbursts can be spontaneous and unpredictable, making some almost impossible to prevent. But research shows the risk of violence increases when hospitals are understaffed or employees are insufficiently trained or experienced.

Mental health worker Andrew Kimball-Mirzaie said he got hurt in February 2024 at Butler Hospital in Providence, Rhode Island.

Andrew Kimball-Mirzaie, a mental health worker at Butler Hospital in Providence, Rhode Island, who says he was assaulted by a patient, participated in a three-month strike in spring and summer 2025. (Lynn Arditi)

He’d been working at the private psychiatric hospital for about six weeks and said he hadn’t yet worked in the ER. He said he was sent there to “monitor” a man in his 20s who was waiting for an inpatient bed.

The patient was alone in a back room watching a Knicks basketball game on TV, he recalled. Kimball-Mirzaie said he got the patient a drink and a snack. They were watching the game when, suddenly, he said, the patient stood up and punched him in the face. He said the assault left him with a concussion and broken nose. His injuries were documented in the hospital’s incident log.

“I understand that there is an inherent danger with the job,” Kimball-Mirzaie said. He doesn’t blame the patient, who was very ill at the time. “We should have had at least another staff member with us,” he said, “and I should have been adequately trained on the unit.”

The attack emboldened Kimball-Mirzaie to join some 700 other unionized Butler workers last spring and summer in a months-long strike, which forced the hospital to close nearly half of its beds. Service Employees International Union 1199 New England declared the strike a win.

Employees received wage increases that union leaders said would enable the hospital to attract and retain more staff. The hospital also agreed to provide financial support for workers violently injured on the job. And the hospital and union agreed to jointly fund a “time bank” to supplement workers’ compensation for injured workers who need more time to recover.

But five months later, a nurse supervisor at Butler had to call 911 because an unarmed patient in the hospital’s ER was assaulting staff. According to the police report, by the time police arrested the patient, he’d injured two nurses, a security guard, and a police officer.

“Butler recognizes the importance of being proactive in protecting those who provide care,” Mary Marran, Butler’s president and chief operating officer, said in a statement. She added that hospital leadership meets regularly with staff to review safety measures and “identify opportunities to strengthen protection for everyone.”

The patient was charged with four counts of felony assault, including against the two nurses.

The American Hospital Association has said punishment is key to preventing violence. It has been lobbying Congress to make assaulting healthcare workers a federal crime that would carry up to 10 years in prison. At least 45 states, including Michigan and Rhode Island, have enacted similar laws. But workplace safety experts say there is no evidence that such laws have reduced the incidence of violence against healthcare workers.

Catherine Maynard, a nurse at Butler Hospital, speaks at a union rally at the State House in Providence, Rhode Island, on May 23, 2025. (Steve Ahlquist)

Calls for ‘Safe Staffing’

Striking healthcare workers around the country often have demanded “safe staffing” instead of stronger punishments for patients who cause injuries.

The rise in violence against healthcare workers has caught the attention of the Joint Commission, the accreditation organization for more than 80% of U.S. hospitals and health systems. The commission released national performance goals that took effect in January and require hospitals to be properly staffed and that staff be trained “to provide safe, quality care.”

But no federal law limits the number of patients in a nurse’s care across healthcare settings, despite the nation’s largest nurses union, National Nurses United, having pressed for a national standard since 2018. Hospitals must “safely staff all units” to enable nurses to “provide the care that patients need before they get agitated or disoriented,” said Jane Thomason, lead industrial hygienist for National Nurses United.

Some states have passed their own staffing laws. Only California has enacted broad mandatory nurse staffing ratios, which research shows were associated with lower mortality rates and likely higher retention. Oregon enacted a staffing law, with exceptions. Legislators in Massachusetts and New Jersey have introduced similar bills, but they have failed to advance to floor votes.

The American Hospital Association opposes mandatory minimum nurse staffing ratios in hospitals, saying they would “remove real-time clinical judgment and flexibility,” compound staffing shortages, and potentially force some hospitals to turn away patients or delay care, spokesperson Colleen Kincaid said. And she pointed to California, whose new emergency nurse staffing ratios for psychiatric hospitals reportedly forced bed closures in at least four counties.

“There are a lot of other things you can do to prevent workplace violence than just increasing staffing levels,” said Jordan Barab, who was a deputy assistant secretary of labor for the Occupational Safety and Health Administration during the Obama administration and helped develop OSHA’s 2016 guidelines for healthcare and social service workers.

Barab said hospitals can, for example, train employees in de-escalation, install metal detectors, or have specially trained security guards on-site so staff don’t have to wait for police to arrive when an incident happens.

Debbie Berkowitz, a worker safety and health policy expert at Georgetown University, said the health provisions in congressional Republicans’ One Big Beautiful Bill Act will squeeze hospitals’ budgets in the next few years.

When funding dries up, she said, “protecting workers is going to be the first thing that gets cut.”

This article is from a partnership that includes NPR and 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.

Tammy Chalala, a retired dietitian in New York, was thrilled with the results of her cataract surgeries, which left her with close to 20/20 vision.

She said she paid nearly $4,000 out-of-pocket for her two surgeries last year because she opted to have her doctor use a laser to assist with the procedure.

Chalala, 69, chose that method over the traditional scalpel after doing research online and consulting with her doctors, believing it would give her the best outcome. “It seemed like the better option,” she said.

Cataract surgery — one of the most common operations paid for by Medicare — typically leaves enrollees owing a few hundred dollars. Some patients pay more to have their vision corrected during the procedure.

But, like Chalala, a growing number of those patients are paying even more out-of-pocket simply because they agree to have their doctor use a laser rather than the scalpel method.

Both methods are safe and can significantly reduce or eliminate the need for patients to wear glasses.

However, many doctors say the laser helps make more precise cuts than the scalpel. The laser method gives patients more options, they say, and recoups more revenue as Medicare has gradually cut what it pays doctors for cataract surgery.

Others, such as Oliver Schein, an ophthalmologist at Johns Hopkins Medicine, point out the strong financial incentive to use the laser, as the equipment can cost a practice up to $500,000.

Schein said his colleagues used the laser a few years after it came out but did not see any benefit over traditional cataract surgery. Still, the laser doesn’t cause harm and provides patients with good results.

“That’s a powerful combination for a surgeon,” Schein said. But in the end, he added, most patients believe paying more will yield a better result.

Medicare pays doctors about $520 for a standard cataract procedure, down about 20% in the past decade. The fee includes pre- and postoperative visits.

While Medicare generally prohibits doctors from billing patients above what the government program pays, doctors are allowed to bill patients extra when using the laser only when it is used to improve vision, because most vision correction is not covered by traditional Medicare.

Specifically, doctors may bill patients when using the laser to insert premium lenses or fix astigmatism. Doctors typically charge $1,000 to $3,000 per eye for use of the laser.

Medicare enrollees also pay out-of-pocket for the premium lenses that can eliminate their need for reading or distance glasses, with charges ranging from $1,000 to $4,000.

Private insurers, including those operating Medicare Advantage plans, typically follow Medicare benefit rules.

Research shows the laser does not provide better outcomes than the scalpel for a standard cataract procedure.

The American Academy of Ophthalmology, the world’s largest organization of eye physicians and surgeons, says on its website: “Studies do not show that laser surgery results in fewer complications. Also, studies haven’t found that laser surgery provides better outcomes.”

Nearly 12% of the 5 million annual cataract surgeries performed nationally are laser-assisted, and that number has been growing, according to the St. Louis-based ophthalmic market data company Market Scope.

“It’s a win-win for patient and doctor,” said Kevin Miller, a UCLA ophthalmology professor. “Doctor makes a little more money on top of the Medicare reimbursement; the industry gets money to develop new technology; and society benefits because these patients are not going for eyeglasses anymore.”

By age 80, more than half of Americans have had cataracts, a condition that causes blurred vision and poor night vision. Most cataracts develop slowly as part of the aging process when proteins and fibers in the eye’s lens break down and clump together.

Doctors for decades have used scalpels to perform cataract surgery, which involves removing the cataract and replacing the cloudy natural lens with a clear artificial one.

Barbara Cobuzzi, 71, a medical billing consultant with traditional Medicare coverage, needed cataract surgery last year. When her eye doctor in New Jersey recommended she get the surgery using a laser at a cost to her of $1,500 per eye, she went looking for a second opinion. “I felt like he was trying to pull a fast one.”

Cobuzzi said the second doctor performed her procedure without a laser, and she was happy with the results, including no longer needing glasses for distance vision.

“Doctors are using the laser as a moneymaker,” she said.

Vance Thompson, an ophthalmologist who is a past president of the American Society of Cataract and Refractive Surgery, said some patients want the laser because it provides a more precise way of doing the surgery, while others choose it to avoid the need for glasses.

He said he talks to patients about the advantages of the laser and lets them decide which method is right for them. “They deserve to be educated on all their options,” Thompson said.

He said about half his patients at his Sioux Falls, South Dakota, practice choose the laser, up from about 10% a decade ago.

The laser is not suitable for all patients, though, including those who have corneal scarring or a small pupil, Thompson said.

It’s challenging to illustrate the benefit of the laser because traditional cataract surgery is already safe and effective, with low infection rates, said Barrett Eubanks, a U.S.-trained ophthalmologist in Toronto.

He said he’s found that, compared with the older method, using the laser makes it easier to implant premium lenses or remove certain types of cataracts. That’s because the laser can make the exact cut it’s programmed to make, unlike the human hand.

Miller, the UCLA ophthalmologist, said the laser helps bring money to his practice as Medicare reimbursement continues to decline. “One of the problems with ophthalmology is everybody is scrambling to keep the lights on,” he said.

Miller said his practice has offered laser cataract surgery for several years. He compares the choice to buying a Toyota Camry or buying a Lexus. “Both will get you where you want to go, but one will get you there with a premium feel and leather seats,” he said.

He said his patients know they can choose the surgery without a laser. “We do not pressure anybody to do anything,” Miller said.

At his practice in an affluent part of Los Angeles, he said, 80% of patients opt for laser cataract surgery. “What you buy with a laser is precision and reproducibility, as every laser cut looks exactly the same,” he said. “It does not make vision better.”

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.

Connecting people with clinical trials is complicated — even if people identify a promising match, there’s a slew of potentially thorny factors, including geographic incompatibility, and financial and time considerations.

Simply finding an appropriate trial can present an enormous hurdle. In a recent online survey of more than 2,000 adults, 71% of patients with chronic conditions said they would be likely to participate in a clinical trial if given the chance. But two-thirds said that their healthcare provider had never discussed clinical trials with them. According to one study using data from 2020, just 9% of adults reported ever being invited to participate in a clinical trial.

Clinical trials are essential to the development of new and effective medical treatments. But gathering the real-world human data necessary to win Food and Drug Administration approval for drugs, devices, and other interventions can be an arduous task. By one estimate, up to 86% of clinical trials don’t meet their recruitment targets during the trial time frame.

Getting people signed up isn’t the only challenge.

“Recruitment is one thing — retention is another,” said Alan Balch, executive board chair at the Patient Advocate Foundation, which has a clinical trial search tool and maintains extensive educational materials online. “Every touchpoint is an opportunity for access and affordability to be a problem.”

The need to improve patient participation in clinical trials is not a new concern, but it’s attracting new interest.

In June, the Department of Health and Human Services announced an effort to streamline and enhance clinical research in the United States. It included a public request for information about whether to modify federal rules that currently deter some trial sponsors from paying clinical trial participants for expenses such as travel and lodging.

In July, a group of nearly 200 patient advocacy and public health groups sent a letter to the Senate sponsors of the Clinical Trial Modernization Act, urging its passage. The bill would allow trial sponsors to cover trial participants’ medical costs, such as insurance deductibles and copays, and nonmedical expenses like travel and childcare. It would also exclude up to $2,000 in financial support for clinical trial participation from federal taxes, so people wouldn’t risk losing their eligibility for Medicaid or other income-based programs if they signed on.

While these efforts to improve clinical trials and patient participation are ongoing, here are answers to some questions about how the system works now and what patients can do if they want to take part.

Why Be a Guinea Pig? Understand the Facts

In some trials, some participants are given a new drug or therapy that’s being investigated while others receive a placebo with no physical effect.

But there are many types of clinical trials. Some test different drug combinations, for example. They can test medical devices, preventive measures such as vaccines, or lifestyle changes. Others test ways to screen for or diagnose medical conditions.

For people with very serious illnesses, a clinical trial may offer the best hope for extending their life or improving their quality of life.

“Cancer is often a fatal disease, and clinical trials offer an opportunity to try something that may or may not be better,” said Mark Fleury, the policy principal for emerging science at the American Cancer Society Cancer Action Network. “If you know the existing standard of care has an average survival of eight months, you want something with a better opportunity.”

In addition, even if patients don’t receive the therapy being tested in the clinical trial, they are monitored closely throughout and receive the gold standard of care, which they might not receive elsewhere, patient advocates said.

Some people decide to participate in trials to aid in advancing science.

Jim Taylor’s wife, Geri, died of Alzheimer’s disease two years ago, more than a decade after her diagnosis in 2012. The couple became advocates for people with the disease, and Taylor is continuing that effort. He’s currently participating in three observational Alzheimer’s trials that are employing cognitive tests and scans to track how his brain is changing compared with the brains of people who’ve been diagnosed with the disease.

“The reason I’ve done it is so I can explain to people, with some authenticness and experience, what a trial is like,” he said.

Finding a Clinical Trial

Despite widespread interest in clinical trial participation, most patients don’t know how to find one.

They can’t necessarily count on their doctors for help. According to an online survey of just over 500 primary care physicians in March, sponsored by the Patient Advocate Foundation, even though 86% of respondents said they were somewhat or very likely to refer their patients to a trial, only 37% had ever done so. When doctors did discuss clinical trials with their patients, it was usually because they had asked about them (67%), they weren’t responding to standard treatment (65%), or their disease was progressing (55%).

But for time-strapped doctors, identifying clinical trials for which patients might be eligible isn’t a simple task. A community oncologist, for example, would typically have to conduct a search using one of the available clinical trial search engines (clinicaltrials.gov is the most comprehensive), type in all the patient’s characteristics, look at the trials that might be appropriate, and call the site to ask whether the trial is still open, Fleury said.

“And if they’re successful, what happens? They lose their patient,” he said.

Patients may have an even tougher time searching for trials on their own. Some patient advocacy groups have in-person or online navigators that can help people identify trials they might be eligible for.

The American Cancer Society has a clinical trial matching service, for example. Organizations such as the Arthritis Foundation and the National Multiple Sclerosis Society have information about disease-specific trials on their websites.

If a hospital or health facility is part of a clinical trial, patients there are often best positioned to enroll. Patients can ask their doctor or the facility for more information.

“Most recruitment for a trial happens at the site where the trial is happening,” Balch said.

There’s a Trial, but You Can’t Enroll

Much of the clinical research in the U.S. is conducted at large, often urban, academic medical centers. It can be tough for patients to enroll in a trial at a site unless they live nearby or are already being treated there, according to clinical trial experts.

To participate in a trial, people generally have to meet periodically with the researchers conducting it. They may also need to get regular blood draws or imaging, or to answer questionnaires to monitor their progress.

“The number one barrier keeping patients out of trials is a lack of onsite clinical trials,” Fleury said.

A 2019 study that examined 8,893 cancer patients’ participation in clinical trials found that more than half (55.6%) didn’t have an available trial for their type and stage of cancer at the medical facility where they were being treated. An additional 21.5% didn’t meet the eligibility criteria for an available trial.

If a patient identifies a clinical trial at a viable location and wants to be considered, the patient should contact the trial recruiters directly and ask them, Balch said.

“That’s just the beginning,” he said. Patients also need to find out whether they meet a trial’s eligibility requirements and whether it’s covered by insurance, and to consider how they’re going to pay for any medical or nonmedical costs.

Recently there’s been a lot of interest in decentralized access to clinical trials, so patients could do at least some of the trial tasks at home or at their local cancer center, for example.

“It’s not common yet,” Balch said. But if decentralization grows, he said, it will open up the opportunity to more patients — and more representative groups of patients.

There’s a Trial, but You Can’t Afford It

If someone participates in a clinical trial, the trial sponsor picks up the tab for costs stemming directly from the trial, including the drug or device being investigated.

In addition, under the Affordable Care Act, most commercial health plans are required to cover routine patient costs associated with participating in a clinical trial.

But that doesn’t mean members won’t owe anything. They are generally still responsible for any deductibles, copays, or coinsurance amounts for the routine care that they receive during a clinical trial. And the ACA doesn’t require plans to have out-of-network benefits. That means if a clinical trial is sponsored by a provider that is out of someone’s provider network, the plan might not cover those costs.

Medicare and Medicaid have similar requirements for coverage of routine clinical trial costs.

For some patients, incidental expenses can put participation in a clinical trial out of financial reach. Participants may face costs for travel to the trial site, parking, lodging, childcare, or taking time off work.

“There shouldn’t be an added set of concerns and disincentives around costs and financial toxicity,” said Wendy Selig, the founder and CEO of WSCollaborative, a healthcare consultancy. Selig is also the project lead for Equitable Access to Clinical Trials, which aims to eliminate incidental costs for patients in trials.

Some trial sponsors pay for incidental expenses but might not make that clear up front to patients who are considering participating.

Patients should take the initiative and ask, Selig said. “There may in fact be help, and you should take advantage of it if it’s available.”

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.

It had been a rough few months. Cynthia Tompkins was hospitalized in May for osteomyelitis — a bone infection — then spent six weeks in a rehabilitation facility. “It was a struggle,” she said. “I didn’t bounce back too well.”

Tompkins returned to her home in San Diego, but she was still taking antibiotics, along with a host of other drugs for diabetes, pain, and blood clots. The deaths of her husband the previous year and her closest friend more recently had sapped her spirits.

In early July, a new symptom appeared: violent vomiting three times within about 24 hours. “I was so depleted,” she said. “I got weaker and weaker.” A friend who was visiting her called an ambulance.

“It’s the last place you think you want to go, the ER,” said Tompkins, 75, a retired teacher and family program director. She anticipated spending hours on an uncomfortable stretcher in a chilly hallway. Arriving at the emergency department at UC San Diego Health in La Jolla early in the morning, “I was in a knot,” she said.

But the place upended Tompkins’ expectations. Since 2022, this and every other adult ER in San Diego has been accredited as a geriatric emergency department, redesigned to address the specific risks and needs of older patients. It’s an approach, recent studies show, that can reduce hospital admissions and deaths among older adults and lower costs.

“They took me right to a room,” Tompkins said. She was transferred to a gurney with a thicker mattress to prevent bedsores and given blankets. “I got an IV right away because I needed fluids,” she said.

She was pleased that the small, curtained room, with sound-absorbing walls to lower the cacophony of emergency care, had a cushioned chair for her friend, who would stay with her, and a window looking out on trees.

The window served a medical purpose, too. Patients “can see whether it’s day or night,” said Denise Valenzuela, the geriatric emergency nurse assigned to Tompkins. “It prevents delirium,” the sudden change in mental status that can arise in hospitalized older patients and increase dementia risk.

Before long, “I just felt a calmness,” Tompkins said. “I felt, I’m where I need to be right now.”

Since 2017, the American College of Emergency Physicians has accredited 624 such geriatric emergency departments across the United States, including 73 in Department of Veterans Affairs medical centers. “A fairly exponential rate of growth,” said Kevin Biese, the emergency doctor who directs the Geriatric Emergency Department Collaborative.

Few of these units are restricted to older patients. Instead, like the ER in La Jolla, they serve all ages but incorporate senior-friendly practices and protocols in an environment aimed at staving off disorientation, falls, and other elder hazards. They’re classified from Level 1, for those fulfilling the highest number of criteria, to Level 3.

Adults 75 and older visit the emergency room at a higher rate than any other age group except infants: 76 visits per 100 people in 2022. Yet standard emergency care “wasn’t correctly designed for the needs of older adults,” Biese said.

The mission of a traditional ER is to speedily identify the central problem and either fix it or admit the patient to the hospital for ongoing care. “We ask, ‘What’s your chief complaint?’” Biese said. “You fell down the stairs and broke your leg.”

Older patients rarely arrive with a single ailment, however. Like Tompkins, most contend with several chronic conditions, take multiple prescriptions, and need a variety of tests and assessments. Trained geriatric emergency teams focus not only on the broken leg but on determining what caused the fall, and how to prevent another one.

“An emergency department doesn’t routinely screen for delirium” and cognitive impairment, said Ula Hwang, an emergency doctor and researcher at NYU Langone Health. “But it’s one of the first things geriatric emergency departments will do,” along with a careful review of all the patient’s medications.

Geriatric ERs also try to counter sensory impairment, another contributor to delirium, by distributing reading glasses and sound-amplifying devices. They dim glaring lights and offer eye masks and earplugs to promote sleep. If Tompkins had forgotten her walker, the unit would have lent her one.

These ERs also aim to address a rising concern in emergency departments: hours or even days spent “boarding,” when admitted patients wait for open beds before they can leave the ER.

“Prolonged boarding has increased among older adults,” said Cameron Gettel, an emergency doctor and researcher at the Yale School of Medicine, referring to waits that last over three hours. He is a co-author of a study on the topic published in Health Affairs Scholar.

Spending more time boarding isn’t merely uncomfortable or inconvenient. Researchers studied patients 75 and older in emergency departments across France. They found that those kept there overnight before moving to an inpatient ward had a higher in-hospital mortality rate (15.7%) than those admitted to a ward before midnight (11.1%). Overnight boarding was associated with more falls and infections, too.

What geriatric emergency staffers prefer, however, is to help patients avoid hospitalization altogether. “Admission may not be the best thing for an older adult,” Hwang said. “It might be the worst.”

Hospital patients, she said, are exposed to infections, staff errors, and the rapid deconditioning that accompanies days spent in bed. All pose a greater threat to older patients.

Previous studies have found reduced admissions from geriatric emergency departments, but most of those studies involved one or two hospitals. Now, Hwang and her team have used nationwide data from the federal “Health and Retirement Study” and Medicare claims for nearly 4,600 adults age 65 or up, comparing those treated in geriatric emergency departments with a matched group seen in standard ERs.

The differences were stark: Patients in the geriatric units had a 39% lower likelihood of hospital admission and a 38% reduction in mortality over 30 days. The geriatric ERs also saved Medicare up to about $3,000 a visit, according to an earlier study Hwang led.

So having more than 600 accredited geriatric emergency departments nationwide represents both great strides and — in a country with more than 5,000 emergency departments — missed opportunities, Biese said.

“I’d encourage people to ask why their hospitals don’t have an accredited GED,” he added, referring to a geriatric emergency department. “We should demand that.”

In La Jolla, Tompkins began feeling stronger. The intravenous fluids supplied anti-nausea medication and corrected the electrolyte abnormalities that her lab work revealed. She was able to sip water and juice and eat a few graham crackers.

A battery of other screens and scans found no serious concerns. After completing a geriatric assessment, Valenzuela, the nurse, suspected Tompkins hadn’t been eating well and was taking medications on a mostly empty stomach.

By about 6 p.m., Tompkins and her doctor agreed she could return home. She left the hospital with numbers to call for further help, and several staff members checked in by phone to see how she was doing.

Better, was her answer. “They took care of the whole me and put me on the right track,” Tompkins said. “I’m progressing. It’s slow, but I’m OK.”

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.

SAN FRANCISCO — At a Walgreens in this city’s bustling Japantown neighborhood, pharmacist Margaret On stocks two boxes of long-acting insulin pens from California’s new prescription drug label, CalRx, emblazoned with the state’s iconic grizzly bear.

Although she hasn’t dispensed any, On plans to keep them on hand. “It’s good to have if a patient comes in and doesn’t have health insurance,” she said. “Or just in case of emergencies.”

Seven months after the launch of its own low-cost insulin brand, state health officials said California has distributed more than 120,000 five-pen packs of insulin glargine priced at $55 each, significantly less than the $89 to $411 that the state says most popular brand names charge before any retail markups or consumer discounts.

While it represents a tiny amount of the state’s insulin pipeline, it marks the first time a state is competing against the three biggest insulin drugmakers — Eli Lilly, Sanofi, and Novo Nordisk — under its own prescription drug label. CalRx, Gov. Gavin Newsom’s experimental initiative, has dual aims: to act as an emergency supplier for people who are uninsured or can’t afford their prescriptions, and to disrupt the nation’s deep-pocketed pharmaceutical industry, which cost the U.S. $467 billion in 2024, the federal government reported in June.

Newsom, a Democrat considering a presidential run in 2028, is expected to make healthcare a central pillar of his national platform as he concludes his second and final term as governor. To create the state brand of generic drugs, California inked a $50 million contract with Civica, a Utah-based nonprofit drugmaker, to develop the CalRx insulin, known as a biosimilar. Though major distributors make the drug available in pharmacies around the state, uptake has been limited.

Newsom’s goal is to saturate the insulin market and offer generic versions of drugs either high in cost or low in supply, or that can improve public health. The state is also distributing free naloxone, used in a nasal spray to reverse opioid overdoses, and trying to bring albuterol inhalers to public schools for students with asthma emergencies. In the next two years, the state plans to launch epinephrine injectables, commonly known by the brand name EpiPen, which are used to treat severe allergic reactions, as well as a state-branded medication to treat tuberculosis.

Before he leaves office in January, Newsom said, he wants to add generic GLP-1 medications to compete with brand-name drugs such as Ozempic and Wegovy. The drugs have exploded in popularity, but employers have raised concerns about their cost.

Taking on drug costs is a winning political issue for both Democrats and Republicans, who have for years tried to rein in soaring healthcare spending as Americans feel the pinch of high prices at pharmacy counters, in doctors’ offices, and from health insurance premiums. The U.S. spends roughly twice as much per capita on prescription drugs as other industrialized countries. Six in 10 adults in the U.S. say they’re worried about being able to afford their prescription drug costs, according to a poll last winter by KFF, and 4 in 10 say they’ve tried to save money such as by skipping doses and not filling prescriptions.

In February, President Donald Trump launched TrumpRx to potentially lower out-of-pocket costs for consumers. But TrumpRx doesn’t produce drugs; rather, it directs consumers to find more affordable medications with coupons or on drugmakers’ websites. Newsom, in contrast, is trying to drive down the underlying price of medicines by increasing the manufacturing and availability of generic drugs.

While some people with diabetes may benefit from CalRx insulin, California’s generic drug effort is largely symbolic at this time, said Geoffrey Joyce, director of health policy at the Schaeffer Center at the University of Southern California. “There is some value, but it’s for a very limited number of drugs for just a fraction of the population,” Joyce said.

And TrumpRx isn’t helping at a large scale either, Joyce added, because many medications it advertises have cheaper generic versions available elsewhere. It would be better, he said, to develop large-scale initiatives that tackle key drivers of the high cost of drugs, for rare cancers for instance, and produce safer and higher-quality medicines.

“What you really need is a national effort that focuses on vulnerabilities like supply shortages and increasing the supply of generic products for higher-priced drugs,” Joyce said.

Market Disruptor

CalRx aims to make insulin more affordable and accessible for the nearly 3.7 million California adults diagnosed with diabetes. Newsom last year singled out the three major drugmakers that control more than 90% of the global insulin market, while also targeting intermediaries known as pharmacy benefit managers for promoting higher-priced drugs over cheaper generic alternatives.

Patients with health insurance often receive discounts at the pharmacy counter and do not pay sticker prices, yet those discount programs can be hard to navigate and patients can face restrictions. While drugmakers and pharmacy benefit managers said they’ve already initiated $35-a-month caps on out-of-pocket costs and pass price discounts on to consumers, Newsom argues that consumers still struggle to afford their medications.

He has criticized pharmaceutical companies for gouging Californians and contended that the industry’s discounting schemes don’t adequately address inflated prescription drug spending, which in the U.S. rose 7.9% in the most recent reporting year.

In his announcement last year that CalRx insulin would go on sale in January 2026, Newsom said the industry had been using discounts to distract consumers from solutions that could bring overall prices own. “One of the things that all of us should be increasingly concerned about is announcements around caps, announcements around discounts,” he said.

In January, California joined dozens of other states in setting insulin price caps. It also passed a law attempting to ban price inflation practices by pharmacy benefit managers.

Representatives for drug companies and pharmacy benefit managers said insulin is largely an affordable medicine in the U.S., arguing that consumers have benefited from discounts.

“While insulin prices, set solely by pharma companies, may be high in some instances, the amount patients are paying out of pocket has declined significantly,” said Christine Rex, senior director of state public affairs for the Pharmaceutical Care Management Association, which represents pharmacy benefit managers.

Reid Porter, a spokesperson for Pharmaceutical Research and Manufacturers of America, which represents brand-name drugmakers, said PBMs have driven up costs for consumers by excluding lower-cost medicines from their lists of covered drugs. “Too often, patients face a system in which insurers and PBMs exclude coverage of those medicines on formularies because of supply-chain incentives,” he said.

Where To Find CalRx Insulin

CalRx insulin has been slow to reach pharmacies around the state, and in interviews, patient advocates said many people with diabetes aren’t aware it’s an option.

In Sacramento, pharmacist Sharon Ngo, who works at a Safeway pharmacy, was surprised to learn that California had a long-acting insulin product on the market. She didn’t know that CalRx insulin was interchangeable with Lantus, which was on back order for roughly two weeks.

“I had no idea this was available,” she said as she took notes on a pad of paper. “We’re going to give this a try.”

CalRx insulin has a suggested retail price of $55 a pack and is available with or without insurance. California has inked deals with four health insurers to cover CalRx insulin on their health plan formularies, potentially making it cheaper, depending on copays. They include Anthem Blue Cross, Blue Shield of California, the Valley Health Plan for Santa Clara County employees, and the Federal Employees Health Benefits Program, according to the state Department of Health Care Access and Information.

Pharmacist Margaret On keeps two boxes of California’s new generic insulin product under the CalRx brand on hand in case of emergencies. (Angela Hart/KFF Health News)

Elizabeth Landsberg, the department’s director, said the state is working to get more insurers to cover CalRx insulin and to provide it at more pharmacies. The state doesn’t know how many boxes have been dispensed. However, Landsberg said it was more meaningful that the state had reached agreements with three major pharmaceutical wholesalers to distribute its product in California. Currently, CalRx insulin is available on Amazon and at Costco, as well as at some retail and grocery store pharmacies including CVS, Walgreens, and Walmart.

“What we’re really trying to do is change market behavior and offer both affordable and transparent pricing,” Landsberg said. “The rebates and discounts are hard for consumers to understand and can change at any time, so we are trying to be straightforward and say, ‘Let’s not play this shell game anymore.’”

Allan Coukell, chief government affairs and public policy officer at Civica, said the company first partnered with the state on long-acting insulin that helps patients keep blood sugar steady for 24 hours or more. Next, it plans to help California develop rapid-acting insulin, which is used to pull elevated glucose down within minutes, to compete with brand names such as Humalog and NovoLog.

Health insurance companies welcomed the state’s efforts, in part because they could help save money they pay out on prescriptions.

“Making this drug available is really about helping people improve their health,” said Paul Markovich, CEO of Blue Shield of California’s parent company. “And the more supply we can get on the market, the more we can get rid of the profit motives in the pharmaceutical industry.”

One July afternoon in the Southern California city of Corona, Chris Noble went to a CVS pharmacy to get a box of CalRx insulin. The pharmacist didn’t have any on hand, but Noble, a healthcare organizer with Type 1 diabetes, was told he could get a prescription filled in 24 hours.

“I have insurance, but I see myself using this if I’m traveling and something happens like my insulin pump malfunctions,” he said. “Now I know I can go to a CVS and get insulin within a day.”

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.

“No more operations,” he said.

It was mid-January 2026, and my then-73-year-old husband, Mike Salmon, had just started bouncing back from a three-month ordeal of three operations related to aortic aneurysms, sepsis, and a terrifying descent into delirium tied to a stay in the intensive care unit. Now, after another potentially fatal aortic aneurysm and ambulance ride, the doctors clustered around his hospital bed said the fix involved two more major, risky operations.

If Mike did nothing, the aneurysm or sepsis would likely kill him, they predicted. How soon? “Weeks,” one doctor said. “I’m astonished I’ve made it this far,” Mike said. So, abruptly, we were shunted onto hospice care — the dead-end spur of the American medical system.

Hospice agencies manage care for patients expected to die within six months. They don’t provide curative procedures or drugs. Instead, they aim to help families make terminally ill patients comfortable, typically at home, as an illness reaches its inevitable conclusion. Families provide most of the day-to-day care, and 85% have suggested they are very satisfied with their hospice’s services, which include supplies of drugs and medical equipment, and visits from nurses, therapists, and aides.

More than 1.9 million Americans were enrolled in hospice in the last fiscal year. Over 80% of those patients stayed on hospice until they died — within four weeks, on average. But each year, about 6% of patients are kicked out because a hospice doctor decides they have stabilized or improved enough that they are no longer likely to die in the next six months.

In May, Mike joined that select group. His experience in and out of the hospice system revealed surprising lessons about how families can manage care. And getting removed from hospice revealed a little-known process that can represent a welcome respite for families like ours — but can be devastating for patients with serious chronic illnesses.

Here’s what we learned in our four months on and off hospice.

Check before you choose.

“Choose one.” A hospital nurse handed me a list of local hospice agencies. The sooner we signed up, the sooner Mike could go home. Stunned by the suddenness of Mike’s health emergency, I just pointed to the name at the top of the alphabetical list, assuming they were pretty much the same.

Big mistake. Medicare sets basic standards for the hospice agencies it reimburses, but some agencies are understaffed or poorly run. Amy Tucci, president of the Hospice Foundation of America, noted that some agencies provide extra therapy, aide support, and other services.

The problems with the organization I had chosen started immediately. Staffers were often late. They entered inaccurate medical information on Mike’s paperwork and didn’t make corrections when alerted. Medicare allows you to quit or change agencies, so I asked neighbors for recommendations.

That was a good start, but Kristina Newport, chief medical officer of the American Academy of Hospice and Palliative Medicine, said I should also have checked the quality ratings on Medicare’s Care Compare site and the National Hospice Locator. Those sites would have alerted me to our first agency’s low ratings. Ideally, Newport said, patients or caregivers should call their area’s top-rated agencies to find those that provide the services you need, such as staff members who speak the patient’s native language, provide spiritual care that aligns with the patient’s beliefs, or are stationed nearby to arrive quickly in an emergency.

The local, long-established nonprofit that neighbors recommended handled the transfer seamlessly. Its staff was punctual, accurate, and kind. The chef’s kiss after we switched: A nurse from the original company we chose called to say she hoped I hadn’t initiated the change because of “concerns about our care of your mother.”

Some people get better on hospice.

Research hasn’t yet fully explored why, but some people actually see their health improve under hospice care. Studies have found, for example, that hospice patients with congestive heart failure or lung cancer live about a month longer, on average, than similar patients in the standard medical system.

Terry Bertholet, who teaches courses on elder law and hospice care at the University of Connecticut, said many patients benefit from hospice’s careful pain management and from leaving hospitals, where they risk infection and overtreatment. Returning home allowed Mike to get up and walk without waiting hours for an overworked nurse to unplug a bunch of monitors, and to enjoy real food. Also, the hospice nurse gave him medicine to help him sleep through the night. He soon started regaining weight and strength.

You can flunk out of hospice for not dying quickly enough.

Medicare and many other insurers pay for hospice services only for patients whom physicians certify are likely to die within six months of the most recent assessment (not the date of enrollment), so hospice staffers regularly reassess patients. Medicare audits agencies to check for fraud and demands repayment of funds provided for care of patients its auditors deem have not proved to be terminal. Hospices, good and bad, worry about their bottom lines and Medicare’s fraud audits. They may feel pressure to discharge patients who threaten the organization’s finances, even though such discharges can remove important care. “Medicare is worried about fraud and abuse, not about people not getting enough care,” Bertholet said.

Especially for diagnoses with uncertain prognoses — such as dementia — if a patient improves or even stabilizes, hospice physicians might discharge the patient because they can no longer certify a likelihood of death within six months.

For some lucky reason, Mike’s aneurysm and sepsis held off. By early May, his wounds had healed, and his strength had improved enough that he returned to gardening, playing bridge, and whipping up his signature lattice-topped blueberry-cinnamon pies. While we appreciated the convenience of the nurse’s visits and the drug and medical supply delivery, we realized Mike no longer needed care, so we agreed with our agency’s decision to discharge him.

For patients suffering from more debilitating diseases, discharges can be a “nightmare,” said Krista Harrison, a hospice researcher at the University of California-San Francisco. Discharges often happen quickly. Medicare requires that patients be given a minimum of two days’ notice.

When Harrison’s father-in-law, suffering from a neurodegenerative disease similar to Parkinson’s, was discharged because his health seemed to plateau, the family scrambled to replace and pay for hospice-provided equipment such as a hospital bed and oxygen supply, and they had to quickly find and hire aides to replace the hospice aides. “Just getting his prescriptions reestablished and filled was a big deal,” she said. Her father-in-law died six weeks after discharge, she said.

Do your homework to ensure appropriate care.

Arming yourself with information about your risks and rights can help you get the hospice care you need when you need it.

• Know your diagnosis. Discharges are unlikely for most cancer patients. But patients with dementia, heart disease, and Parkinson’s often plateau. So they are disproportionately likely to be discharged, UCSF’s Harrison said.
• Choose a highly rated hospice. Research shows for-profit hospice agencies are more likely to discharge patients than nonprofits. Medicare’s Care Compare site will alert you to which is which.
• Keep your own records. Caregivers who can document, say, a patient’s growing need for eating assistance can help hospice staff approve continuing care, or build a stronger appeal, UCSF’s Harrison said.
• Keep your family doctor more informed. Doctors “don’t have the financial interest” the hospice faces and could help you dispute a discharge, Bertholet advised.
• Appeal quickly. Hospice agencies must provide information on appealing a discharge. But you must file the appeal (online or by phone) by noon on the day before the termination date, which may mean you have only a few hours if you’ve been given the minimum two days’ notice, said Wey-Wey Kwok, a senior attorney for the Center for Medicare Advocacy.
• Reenroll. Patients can try reenrolling in hospice at any time. Another hospice agency may take you immediately. Or you can wait until the patient’s health declines and try reenrolling with your original hospice agency, the Hospice Foundation’s Tucci advised.

That last option is our plan. For now, Mike and I are enjoying these unexpected bonus days. But whenever fate catches up with him, Mike said, he’s comforted to know he’ll get good care from the hospice’s staff. “They’ll try to improve the quality of what time I have left,” he 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.

Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.

Work Requirements Unfairly Burden Medicaid Applicants

Great story (“A Deloitte-Run System Denied Medicaid Benefits for Michigan’s Disabled. Now Trump’s Law Piles On,” July 21). However, a key point was missed. The wrongly denied recipients have the burden of proving their entitlement. This can cost thousands. They have no money with which to finance the carrying of that burden of proof. Additionally, how does one prove that they cannot do any work? Doctors generally say: I will just provide their work restrictions (e.g., 10-pound lifting restrictions), but I’m not a vocational expert, so I’m not going to opine on “employability” or “non-employability.” Moreover, it takes many months to go through reconsiderations and appeals, so even if the worker wins, they will have lost everything by then. Finally, under the doctrine of “exhaustion of remedies,” the recipient must suffer through the administrative steps before asking a court to help. And even then, the court will defer to the administrative agencies’ findings of fact (i.e., the department’s hired doctor over the treating doctor).

Bottom line: Once there is an incorrect/wrongful denial, it is an unjust horror show that literally destroys lives — all because far-right politicians have stereotyped Medicaid recipients, painting them all as presumptively people who could work but would rather just unjustly receive benefits — a totally false and ignorant paradigm. A partial solution would include placing the burden of proof on the state to prove the recipient can work and that suitable work is available, and to enact a presumption that when a treating doctor has credibly explained a substantial disability, the department must presume qualification absent clear and convincing proof to the contrary.

— N. Dean Nasser Jr.; Sioux Falls, South Dakota

A Reckless Data Grab?

The Office of Personnel Management has already suffered massive data breaches affecting millions of employees and their families.

I am a retired federal civil servant and one of the many whose data was stolen in 2015.

The latest federal actions (“Trump’s Personnel Agency Says It Will Remove Some Identifying Info as It Sweeps Up Medical Records,” July 22) raise the question of how the requested massive dump of health data can be safeguarded any better than the personnel records previously affected.

— Kathryn Edgecomb; Vancouver, Washington

States Need More Than Money To Fight the Opioid Crisis

New Mexico offers a compelling case study in the national conversation about opioid settlement accountability (“Leadership Vacuum: Agencies in New York and Beyond Pass the Buck on Opioid Cash Oversight,” July 21). While much of the public attention has focused on whether settlement dollars are being misspent, the New Mexico Office of the State Auditor’s review of local governments found a different problem: Large amounts of opioid remediation funding remain unspent years after settlements were reached and funds were distributed. The state auditor’s transparency review identified more than $100 million in opioid settlement funds held by local governments, with many entities reporting little or no expenditures as of fiscal year 2025.

That outcome does not point to widespread misuse. Instead, some local officials repeatedly cited workforce shortages, provider capacity constraints, procurement hurdles, and long-term sustainability concerns as barriers to moving dollars into prevention, treatment, and recovery programs.

While these barriers are significant, New Mexico has built structures that may be worth watching. A state law established dedicated opioid settlement funds and a framework intended to ensure resources are used for opioid remediation purposes. State agencies, local governments, behavioral health providers, and policymakers are now working through how best to coordinate spending, measure outcomes, and communicate progress to the public. The New Mexico Office of the State Auditor will continue to provide transparency, reporting on who is spending, what is producing results, and where bottlenecks exist.

The lesson for other states is clear: Securing settlement dollars creates an unprecedented opportunity to remediate harms resulting from the opioid crisis, but it is only the first step. States also need the workforce, infrastructure, and coordination to turn that money into treatment, recovery services, prevention programs, and fewer overdose deaths.

The core question is no longer just where the money is. It is whether states have built the systems to translate settlement dollars into measurable public health gains.

— New Mexico State Auditor Joseph Maestas; Santa Fe, New Mexico

Progress on the Prior Authorization Front

Health plans continue to make steady progress implementing the multiyear series of voluntary commitments to simplify prior authorization. The article “Insurers Hedge on Trump-Backed Pledge To Improve Denials Process” (July 17) paints an incomplete picture of this ongoing work, particularly related to supporting continuity of care for patients and standardized submissions for prior authorization requests.

Participating health plans committed to implementing six reforms aimed at reducing administrative burden and accelerating access to care on a transparent timeline, and that work is on track. In April 2026, participating health plans announced the elimination of 11% of prior authorizations and a standardized approach for submitting electronic prior authorization requests for most medical services starting in 2027.

Health plans will continue adopting common data standards on a rolling basis as the standardization commitment is fully implemented, starting in 2027. As more providers move away from manual, error-prone processes and adopt electronic prior authorization, this standardized approach will mean faster answers, a more consistent experience, and less friction for everyone.

All participating plans have continuity of care programs in place to support member transitions between insurers during an active course of treatment. Under the voluntary commitments, when a patient with an approved authorization for in-network care switches health plans, the previous plan’s authorization is honored for 90 days. Health plans can implement several data exchange options to support patient transitions, and plans are not required to use a specific method to meet the commitment.

The series of voluntary commitments made by the industry requires substantial work, meaningful investment, and strong partnerships. Health plans are making steady progress in meeting these commitments and will continue to do so until they are fulfilled.

— Mike Tuffin; AHIP president and CEO; Washington, D.C.

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.

Thomas Zordani flew from his home in Denver to Phoenix for a consultation with a Mayo Clinic neurosurgeon, hoping to find out what could be done to treat his debilitating headaches after worrisome brain scan findings.

When making the appointment, Zordani said, he’d been told the clinic was in his insurer’s network. Upon arrival, Zordani was summoned to the clinic’s financial office and told he had to make a $5,000 preservice deposit, because Mayo had since determined it did not accept his insurance. He was automatically designated “self-pay,” even though his plan had out-of-network benefits.

Not having that kind of cash on hand — and angry on principle — he refused. His appointment was canceled.

“I was so livid,” Zordani said, recalling that day in early April 2024. He later learned that Mayo had sent a message to him in his insurance carrier’s patient portal shortly before his visit with an estimate of the cost: $565, not the larger amount it later demanded.

Traditionally, patients usually receive bills for their share only after getting treatment. But what Zordani faced is becoming increasingly common — hospitals or other medical providers seeking prepayments.

“We regret that this individual’s experience did not meet the high standard of communication we strive to provide when helping our patients understand their insurance coverage and financial responsibility,” Andrea Kalmanovitz, Mayo’s communications director, said in an emailed statement. “When prospective patients don’t have clarity that Mayo Clinic is not in-network with their health plan, unexpected pre-service deposit requests may result.”

Mayo’s website says it requires prepayments in a variety of cases, including for “noncontracted” — also known as out-of-network — insurance plans.

The trend of hospitals asking for money up front represents a double whammy for patients.

Medical providers are collecting larger shares of what patients might owe at a time when rising deductibles mean patients are owing more for care. The preservice charge could be all or part of a remaining deductible, for example, or a sizable percentage of what the visit or treatment might cost. Those deductibles go up when hospital prices, drug costs, and labor expenses increase, as insurers try to slow premium growth by shifting more costs to patients.

People are “basically being asked to self-insure,” said Richard Gundling, a senior vice president at the Healthcare Financial Management Association, an organization for finance professionals.

As that happens, hospitals figure more patients will have trouble meeting those deductibles, so they want to get as much up front as possible.

“Things like preservice deposits and those kinds of moves are probably going to become more and more likely,” said Chip Kahn, a visiting senior fellow at KFF and the American Enterprise Institute and former president and CEO of the Federation of American Hospitals. “That will make it harder on the provider, the clinician, and harder on the patients.”

The deposits can’t be viewed in isolation, Gundling said: It’s a bigger issue than just hospitals asking for money up front. The challenge, he said, is: “How do we maintain access to care when more patients can’t absorb the level of out-of-pocket costs?”

Already, consumers are increasingly worried about paying for healthcare. A recent KFF health tracking poll found that lower out-of-pocket costs ranked as the top change insured adults would like to see from their coverage plans. KFF is a health information nonprofit that includes KFF Health News.

The average deductible in family coverage offered by employers is $3,762 per person, according to KFF, while the average deductible in Affordable Care Act plans jumped 37% this year to a similar amount, $3,786.

A Consumer Concern

Community Health Advocates, a health insurance consumer assistance program in New York state, hears from people who are concerned about prepayments, said Diane Spicer, a supervising attorney.

“We see this mostly with insured folks who are seeking out-of-network care but who have out-of-network coverage,” Spicer said, “and also sometimes for care that is not covered.”

Just how many hospitals collect what are often called point-of-service payments is not known, according to Kodiak Solutions, a technology company that provides services to health systems to help manage their revenue.

“But it is becoming more and more the center of many of our conversations with health systems,” said Matt Szaflarski, a vice president leading Kodiak’s revenue cycle intelligence team.

In addition to Mayo, Baltimore-based Johns Hopkins Medicine’s website says that “it is our policy to collect all amounts owed before services are rendered” for non-emergency care. University of Texas-affiliated MD Anderson in Houston, one of the nation’s premier cancer treatment centers, says patients who pay for their own care “will be asked to pay an initial deposit determined by the care center, based on the type of cancer.”

On average, hospitals collect about a quarter of what they expect the patient will owe, Szaflarski said, based on what they estimate the insurer will pay — a percentage that has grown in recent years.

For example, if a person is coming in for imaging and the insurer will reimburse $1,000 for that scan, the hospital will seek $250 from the patient up front, he said. “That used to be closer to $150.”

It also varies by hospital, and sometimes by state.

“The state of Indiana has some of the lowest cash collections in the country. They are Midwest nice,” Szaflarski said. He added that California and Texas are among those that collect more.

Even as hospitals increasingly collect more upfront payments, however, their uncollected debt is also rising, according to data Kodiak collected from more than 2,300 hospitals nationwide.

A Kodiak report in June said that’s because of a “fundamental shift” in coverage as plans “increasingly feature higher deductibles, greater coinsurance, and more complex cost-sharing structures: all elements that increase the nominal patient responsibility without improving—and often reducing—the probability of collection.”

While many hospitals are doing fine, some, especially in rural areas, have thin margins — and things could soon tighten further as cuts to ACA and Medicaid funding lead to more people being uninsured.

As a result, hospitals “have to be concerned” about every cost-sharing dollar, Kahn said.

After Zordani returned to Denver, he said, it took a while to find another specialist. He eventually had a procedure in late June 2024, at a Denver hospital not affiliated with Mayo, to fix a spinal fluid leak.

The following fall, he filed a complaint against Mayo in Arizona civil court. He was awarded $47,500 in economic damages and attorney fees after an arbitrator in September 2025 determined Mayo violated a state consumer fraud law because it failed to reach him to say that his plan was not in-network before he traveled. Mayo’s statement to KFF Health News did not include any reference to the settlement.

“Had they notified me in timely fashion as required, I would not have flown there,” Zordani said. He’s still angry that the clinic didn’t ask his permission before designating his care as self-pay, which meant he wasn’t going to use his insurance, and he’s still unclear on how they calculated the $5,000 preservice amount.

When Do Consumers Have to Make Preservice Payments?

There is one clear rule: In emergency situations, hospitals that accept federal Medicare financing cannot, by law, demand upfront payment before stabilizing a patient who arrives at an ER, said Matthew Fiedler, a senior fellow and health policy researcher at the Brookings Institution.

Other consumer protections are less clear.

Patients who get in-network care may have some recourse in their contracts with their insurers, so they should check the fine print, experts told KFF Health News.

“In out-of-network settings, I’m not aware of any barriers that would prevent a provider from doing this,” Fiedler said of preservice deposits.

How those amounts are calculated also appears widely up to the provider and can be opaque.

“They could just say $1,500 and you’d be like, ‘Oh, is that 10%, or is that how much is left on my deductible?’” said Patricia Kelmer, senior director of healthcare campaigns at PIRG, a national federation of independent consumer advocacy groups.

Yet, she added, the patient might be scheduling three months in advance, so the provider wouldn’t know how much was left on the deductible. She recommends consumers ask for an itemized bill and call their insurer to find out whether it has rules regarding the charges.

Also unclear are how and when patients get their money back if they overpay.

Overpayments can happen if patients don’t require the services originally estimated or when insurers pay other bills first, such as the anesthesiology cost or a surgeon’s fees. If those payments are counted toward a patient’s deductible, yet the patient had already made a prepayment to the hospital for the expected deductible, they’ve now paid too much to the hospital.

How soon they get their money back can vary and can depend on state laws, though a small number of states directly address the issue. As of this year, Florida requires medical providers to reimburse patients within 30 days of a determination of an overpayment. Some states, including Maryland, prohibit certain hospitals from requiring prepayment simply to avoid offering financial assistance.

After alleging that some patients had to wait more than a year to get reimbursed, Arizona Attorney General Kris Mayes recently brought a suit under state consumer protection laws against SimonMed Imaging, which has 170 locations in 10 states.

In a settlement, SimonMed agreed to issue refunds within an average of 60 days.

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.

Hospitals across the U.S. are trying to reduce maternal deaths and complications after pregnancies using one small tool: a silicone wristband stamped with the declaration “I Gave Birth.”

The wristbands are part of a growing initiative first launched by North Carolina-based ECU Health as Congress sought to address the nation’s growing maternal mortality crisis during the covid pandemic. Since 2021, nearly 50 North Carolina hospitals and the state’s health department have begun distributing the wristbands, to give mothers and care providers a visual reminder of the life-threatening health risks after birth.

The Connecticut state health department; large health systems in Arkansas, Georgia, and Mississippi; and hospitals in at least 24 other states have also embraced the program. The wristbands are intended to make emergency workers aware of postpartum risks, ensure better treatment, and help lower maternal mortality rates in the U.S., where nearly 70% of pregnancy-related deaths happen after the day of delivery — and nearly 40% happen after the six-week mark.

This year, North Carolina plans to expand the initiative with part of the $213 million it received through the Rural Health Transformation Program, a provision of President Donald Trump’s signature One Big Beautiful Bill Act, also known as HR 1.

Tamika Auguste, a physician and the board chair at the American College of Obstetricians & Gynecologists Foundation, praised the wristbands as a useful tool “to increase awareness and education around postpartum health.” But she and others who focus on maternal health said efforts like the wristband campaigns are only part of what’s needed to combat the broader maternal mortality crisis in the U.S.

And they noted the wristbands’ popularity is emerging as Trump’s 2025 law is expected to reduce Medicaid spending by more than $900 billion over 10 years, according to a Congressional Budget Office analysis. Medicaid, the federal-state program that covers healthcare for low-income families, pays for at least 40% of births nationwide.

Elisabeth Wright Burak, a policy researcher at Georgetown University’s Center for Children and Families, said Trump’s tax-and-spending law is stifling the momentum states had been gaining with maternal care since 2022. That’s when Congress allowed states to extend postpartum Medicaid coverage from 60 days to a year, which nearly every state did.

Now, those extensions could end up on the chopping block, Burak said, as states seek ways to manage Medicaid losses.

“There is no question that HR 1 risks setting the clock back for maternal health,” Burak said.

A report she co-authored in July warned that postpartum patients have more to worry about with the new law than simply cuts to Medicaid. States are also setting up systems that may not adequately track pregnant and postpartum enrollees who should be exempt from the law’s new work requirements, erroneously dropping them from coverage, Burak’s report said.

Maternal Mortality

U.S. maternal mortality rates have risen and fallen over the past seven years, with 649 maternal deaths in 2024, according to the most recent Centers for Disease Control and Prevention data. Tennessee had the worst maternal mortality rate in the nation from 2020 to 2024, around 42 deaths per 100,000 births, according an analysis of CDC data by the Congressional Research Service. North Carolina’s rate was about 29 in 100,000, with a national average of 23.

In its Rural Health Transformation Program application, North Carolina said the initiative creating the “I Gave Birth” wristbands reduced postpartum readmissions by nearly a third at ECU Health Medical Center in Greenville, without elaborating. In online promotions, some hospitals have claimed the wristband campaigns can save lives, though many have recently launched and their impact has yet to be studied.

“Additional research is needed to conclusively confirm the outcomes of such initiatives,” said Hannah Jones, a spokesperson for the North Carolina health department.

Hospitals provide a wristband to patients who have given birth and instruct them to wear it for weeks or months, hoping they’ll be reminded to check in with a physician if they feel chest pain, have headaches, or start bleeding. The accessory resembles the yellow Livestrong wristband, part of a cancer awareness campaign launched by cyclist Lance Armstrong’s foundation. A nurse also talks through postpartum risks with the patients, and they’re sent home with pamphlets and guidebooks on how to care for their new child and themselves.

“The bracelet itself is simply a reminder of, ‘Hey, I got education,’” said Jessica Noble, a nurse with East Carolina University-connected ECU Health who pioneered the initiative.

It’s also intended to alert first responders and other healthcare providers that a woman has recently given birth and to check for postpartum complications, such as low blood pressure, bleeding, or infections. Emergency department staff and EMS workers sometimes don’t have adequate training to recognize postpartum complications, research shows, which can be dangerous when those patients end up in an emergency room.

North Carolina and other states have embraced “I Gave Birth” wristbands as a way to encourage women to seek help when they have postpartum complications. They’re gaining steam as the Trump administration’s cuts to Medicaid threaten postpartum care. (University of Arkansas for Medical Sciences)

Postpartum wristbands gained traction across the country through health awareness campaigns fueled by social media posts and evening news segments. New mothers appeared in promotional photos and videos wearing the wristband and raving about the accessory, saying it celebrated childbirth.

Some postpartum patients who faced traumatic births or mental health struggles saw it differently.

‘So Many Risks’

Alexandra Mellon gave birth last year. Her daughter was stillborn. Devastated, she sought out a therapist, donated her breast milk, and tried to find meaning in her circumstances. She spent a year feeling isolated, she said, often because people don’t know what to say.

Mellon said wearing one of the wristbands would have been a painful reminder of her loss.

Now she works as a doula in Asheville, North Carolina. Mellon said what she thinks new moms need most is community and emotional support. The wristband could help encourage that for some patients, she said, but isn’t for everyone.

“There are so many risks, and it’s just like you almost become invisible,” she said.

More than 80% of pregnancy-related deaths are preventable, according to the CDC. The Centers for Medicare & Medicaid Services in March published guidance, developed during the Biden administration, that urged hospitals to create better emergency department protocols to catch postpartum complications and to measure their work against state and national maternal health data.

But those efforts faced a major threat last year when the Trump administration sought to cut CDC funding for state-level maternal mortality data in its proposed 2026 budget. While Congress rejected that move, the administration did lay off staff tracking postpartum patients’ health.

The Trump administration tried again to cut $113.5 million in CDC maternal health research in its proposed 2027 budget. Congress has instead proposed increasing funding to $115.5 million.

Without more research, it’s unclear how effective the wristbands are in encouraging postpartum patients to seek care when they need it. A U.K. study of mass media campaigns to improve health outcomes, such as preventing risky substance use or encouraging exercise, found that the campaigns didn’t change behaviors. Another study found that the U.S. “Back to Sleep” campaign, which educates parents on safe sleeping practices with babies, dramatically reduced rates of sudden infant death syndrome for several years after it launched in 1994, though rates plateaued in the early 2000s.

In 2020, the CDC tried a similar national campaign, “Hear Her,” aimed at helping women speak up when something felt wrong after delivery.

The CDC released a study on the campaign years later that said it “had the unintended consequence of appearing to put the burden on the people who are pregnant or postpartum to speak up.”

ECU Health Medical Center created the wristband initiative in 2021 and published a study two years later. In it the authors noted the pregnancy-related readmission rate at the Greenville hospital fell 0.77%. It attributed the change to the “education provided to patients, family members, and medical personnel” in the initiative, without elaborating.

Campaigns like the “I Gave Birth” initiative are far from a final solution to maternal mortality, said Noble, the campaign’s architect and lead author on the ECU Health study. If she “had a magic wand,” she said, North Carolina would not just have better postpartum care but would also address the root causes of pregnancy complications. “But I don’t have one, and I can’t make system-level change immediately.”

ECU Health in eastern North Carolina created the “I Gave Birth” wristband initiative in 2021 at a time when Congress was seeking to address the nation’s maternal mortality crisis during the covid pandemic. (ECU Health) 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.

HOT SPRINGS, S.D. — Two of the nation’s most powerful health officials predict artificial intelligence will play a key role in solving rural America’s health challenges.

Health secretary Robert F. Kennedy Jr. told a panel of U.S. senators that AI nurses can provide “concierge care” to rural patients. Mehmet Oz, who leads the Centers for Medicare & Medicaid Services, has said “the best way to help some of these communities is going to be AI-based avatars” that connect rural patients to mental health services.

And many state health leaders agree. They are using some of their funding from the $50 billion federal Rural Health Transformation Program to expand AI among rural health organizations.

AI is computer technology that performs tasks that typically rely on human intelligence by finding patterns or generating words. It has the potential to improve the healthcare system by automating back-office work or identifying patients at risk, but several reports contend there’s little evidence AI can improve access to care and patient health in rural areas. It’s unclear how well states will track and share outcomes of the tech they invest in.

Meanwhile, some rural Americans are skeptical, according to interviews with people in Hot Springs, South Dakota, a city of about 3,400 residents at the southern end of the Black Hills.

“I get artificial intelligence for certain things, but for personal healthcare — no,” Tara Haffner said while standing outside the American Legion.

Haffner said she’s worried about AI making mistakes and wants healthcare to stay between her and her doctor.

But Phillip Mues, who oversees technology at Cherry County Hospital and Clinic in rural Valentine, Nebraska, said AI is already helping clinicians save time, reduce burnout, and focus more on patient care.

“I think it will help reduce burden on actual staffing,” he said. “It won’t replace people, but I think it will help in rural communities.”

Still, Mues said, AI can’t fix every challenge. Rural hospitals at risk of closing or ending certain services probably can’t use AI to save enough money to prevent those consequences, he said.

Congressional Republicans created the five-year Rural Health Transformation Program last summer as a last-minute sweetener to President Donald Trump’s signature One Big Beautiful Bill Act. The funding was intended to offset concerns about the outsize fallout anticipated in rural communities from the law, which is expected to reduce overall Medicaid spending by more than $900 billion over a decade.

The Word on the Street

Hot Springs, which has a 25-bed independent hospital and a Department of Veterans Affairs hospital, is known for its sandstone buildings, veterans’ services, and, yes, hot springs. Residents must drive at least an hour for more advanced care.

Six people interviewed there by KFF Health News said the biggest problem in rural healthcare is the cost or long wait times caused by staffing shortages.

Doug Nikkila, a heavy equipment operator, said AI and other technology come with benefits and risks.

“If it’s not utilized correctly, it becomes a burden,” he said.

Nikkila, who’s concerned about nursing home residents being neglected amid staffing shortages, said he thinks AI should send reminders to staff when their residents are due for diaper changes or other care. He also wondered whether AI-powered video monitors could send alerts when they detect falls or illness symptoms.

The healthcare industry is rapidly adopting AI despite the tools being “poorly evaluated,” according to a recent report from ARISE, a Stanford- and Harvard-led group that evaluates health-related AI. The report says that while some AI has been successful in controlled settings, there’s less evidence it can perform in the real world. It also said few studies track patient outcomes.

Evidence is especially lacking in rural areas. A recent academic paper found that only 26 peer-reviewed studies about AI in rural healthcare were published from 2010 through April 29, 2025. Few analyzed implementation or outcomes.

Despite the dearth of results, some states appear interested in bold experiments — such as using AI to suggest diagnoses or recommend treatments. Utah officials said in their application to the rural health program that they are interested in funding a controversial experiment in AI-powered prescription refill requests.

Even tools proven to work in urban settings may not work in rural ones, said Qian Huang, an assistant professor at the Center for Rural Health and Research at East Tennessee State University.

She said the technology is usually tested at large, academic hospitals and trained on data from urban patients, who may not have the same health issues and obstacles — such as a lack of transportation — as rural patients.

A KFF Health News review of states’ plans for the Rural Health Transformation Program shows they’re interested in using AI to automate time-consuming, behind-the-scenes tasks, such as medical charting, coding, referrals, and prior authorization requests. Some states also mentioned ways AI can save money, such as Washington, which discussed tools that “identify and recover” money it’s owed.

Mues said the Valentine clinic has been using AI scribes that record appointments and generate notes describing the visit. He said surveys of clinicians before and after they started using the technology show the scribes have helped reduce burnout by letting providers focus on patient care with “eye contact on the patient, not the computer.”

States also mentioned funding AI that directly affects patient care, such as tools that recommend possible diagnoses and treatment options to clinicians. Mississippi wants to use predictive AI algorithms to “guide” emergency medics with “triage, routing, and treatment decisions.”

Several states want to use AI to analyze patients’ medical charts and remote monitoring devices to identify immediate or future health risks. North Dakota’s plans mention AI to “detect early signs of chronic disease and behavioral health conditions,” while New Hampshire’s discusses AI that identifies patients “at high risk of adverse drug events.”

Some states plan to give patients access to chatbots or wearable devices that transmit data to their clinicians. Utah is interested in funding AI-powered fetal-monitoring devices, while Kentucky will explore using AI chatbots to “deliver personalized nudges and education” through “health coaching, gamified incentives, and rewards.”

Whether the technology appeals to consumers is another matter. Hot Springs resident Stephanie Keller wears a smartwatch to track her fitness but has no interest in an AI chatbot using her data to encourage her to reach her health goals.

“I don’t have the time to chat with AI every day. I mean, are you kidding me? I don’t want to spend my time on a cellphone,” she said.

Rural health facilities also face challenges in implementing AI.

Huang, who has written about AI in rural healthcare, said rural hospitals and clinics may not have the hardware or IT staff needed to support the technology. She said clinicians and staff may already be doing three jobs at once and not have time to go through AI training.

Rural health facilities may not have fast-enough internet to use AI, while patients may have slow connections at home — if they have internet at all — or may not feel comfortable using AI, Huang said.

“In rural communities, trust and a personal relationship is essential,” she said.

Roy Ehlers, a Hot Springs resident, said he doesn’t trust AI in healthcare, or anywhere else.

“I’m old-fashioned. I don’t believe in it. Technology is not my forte,” Ehlers said.

Mues said that while some rural patients are “scared of AI,” most have let their clinicians at the Valentine facility use the scribing technology to record patients’ visits.

Will States Share AI Results?

Despite questions about implementation, the boom is on. Jordan Everson, an assistant professor at the Georgetown University Department of Family Medicine, said both urban and rural health facilities are rushing to use AI.

“The risk of signing contracts that rural healthcare organizations come to regret is pretty high,” said Everson, who previously worked in the information technology office at the U.S. Department of Health and Human Services.

Several states are addressing that risk by using their rural health funding to create groups that will help rural health facilities vet, select, or monitor AI tools while offering training, ongoing assistance, or funding for upfront costs.

CMS spokesperson Timothy Foster said the agency doesn’t have any AI-specific reporting requirements but is working on a form for states to report their overall progress and outcomes.

Abraham Pritzker, who works at Julota, a company that helps health organizations track data, said states should measure more than how often AI programs are used.

For example, states can measure whether the tech reduces falls, 911 calls, or hospital admissions, said Pritzker, a former paramedic. Huang said it’s also important to ask clinicians and patients about their experiences using AI.

Yet many states’ applications to the rural health program mention tracking only AI adoption metrics, not what happens after facilities deploy the tech. Some of these states may add further reporting requirements down the road.

Vermont spokespeople did not respond when asked why their state’s funding opportunity for AI scribes requires organizations to report only how many clinicians and patients are served by the tech, not how much time they save.

States requiring recipients to report outcomes include Connecticut, which will track how often AI-powered patient monitoring devices trigger accurate alerts. Texas will require organizations to track cost savings, while Wisconsin lists “patient outcomes” and “productivity and efficiencies” as possible metrics.

Huang said that after collecting results, states need to share them so other states and healthcare organizations can learn from their experiences.

“We do not have a lot of resources to waste on tools that don’t work in rural areas,” 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.

More than a million times a year, a U.S. surgeon slices open a knee, strips out worn cartilage, caps the leg bones with metal, and drops in a plastic spacer to allow the new joint to glide.

While knee replacement procedures have become standard, however, the prices charged have not.

At Catawba Valley Medical Center in Hickory, North Carolina, for example, the cost of the procedure under a Blue Cross Blue Shield health plan this year was about $16,000, according to data from Serif Health, a San Francisco startup that collects recently released data from hospitals and insurers. Little more than an hour’s drive west, however, at Mission Hospital in Asheville, the cost of the procedure under the same health plan was around $40,000, or more than double, the data showed.

Formed by the merger of the two largest hospitals in the region, Mission has little competition and more power to demand the higher price.

This comparison between these two hospitals illuminates how large hospital systems created by a wave of U.S. mergers in recent decades can dominate the competition and push up healthcare costs.

While many factors affect the price of a medical procedure, hospitals with few competitors can charge more, health economists say.

The hospital price hikes mean patients and their insurers must pay more for an episode of healthcare. But there is an important side effect, too, even for people who don’t require medical care. When insurers face higher hospital prices, they pass the costs on and raise the prices they charge for everyone’s health insurance.

Using Serif Health’s pricing data, it is possible to see how mergers like the one that created Mission Hospital influence costs. For years, it was difficult to determine how much hospital monopolies boosted charges. But since 2021, the Centers for Medicare & Medicaid Services has required hospitals to disclose prices, making it possible to gather comprehensive data such as Serif Health’s.

The connection between market power and prices exists across the country. In Melbourne, Florida, Holmes Regional Medical Center is part of a health system, Health First, that dominates surrounding Brevard County. The center has charged Cigna two times what a hospital two hours north did for a knee replacement this year, the Serif Health data shows.

Banner North Colorado Medical Center, which ranks as the leading healthcare provider in Weld County, Colorado, charged a UnitedHealthcare patient $20,000 more for the surgery in Greeley than a health system an hour’s drive south in Denver, according to Serif’s figures.

The American Hospital Association has argued that hospital mergers can improve quality and reduce healthcare costs by creating “a fiscally sustainable environment.” A Mission Hospital spokesperson said comparing hospitals’ prices was unfair or misleading because their practices and constraints vary so much.

For years, economists suspected that the run of mergers beginning in the late 1990s was a main driver of the rising costs of U.S. healthcare. From 2002 to 2020 alone, more than 1,000 hospital mergers unfolded in the United States.

But until the recent federal disclosure rule, the effect of healthcare monopolies on pricing was often overlooked or harder to detect. Hospitals do not advertise their prices, and even when they are revealed on a bill, patients scarcely notice the bottom line because they don’t pay most of it — their insurers do.

“What the data shows pretty clearly is that when hospitals have bargaining leverage, they tend to have higher prices,” said Zack Cooper, an associate professor of public health and economics at Yale University who has spent more than a decade studying hospital monopolies.

Over the last quarter century, Cooper said, hospital prices have risen faster than those for any other economic sector, and “hospital consolidation is one of the primary drivers.”

Federal and state officials have wavered over when to intervene when hospitals are proposing to merge. Last summer, President Donald Trump revoked former President Joe Biden’s 2021 directive that urged federal agencies to challenge mergers that could harm consumers, reversing course from Biden’s more aggressive enforcement of antitrust law. In a March memo, however, Federal Trade Commission Chairman Andrew Ferguson called for a task force on healthcare mergers that are leading to “higher prices” and “decreased quality” of care.

Several states have sought to curb healthcare monopolies. In 2023, Minnesota passed a law banning anticompetitive healthcare mergers and bolstering state oversight. In 2022, California passed a law requiring healthcare businesses to give the state a 90-day notice of large mergers and created an agency to investigate their effects on competition. And Oregon passed a law in 2021 enabling the state health department to block acquisitions and mergers of hospitals.

Nothing has stopped the overall trend, however, as hospitals seek to grow and gain leverage over insurers and competitors. Last year alone, hospital and health systems announced 46 mergers and acquisitions, according to Kaufman Hall, a healthcare business consulting firm. Five ranked as “mega-mergers,” meaning they were valued at more than $1 billion. One merged 28 hospitals across Connecticut and New York into a powerful interstate health system. Another linked Sanford Health and Marshfield Clinic Health System, a deal that created a 56-hospital system across the Midwest — including Iowa, Michigan, Minnesota, Wisconsin, and Wyoming — with combined revenue of about $10 billion.

Other mergers have been proposed in California, Hawai‘i, and Minnesota.

Asheville’s Dominant Hospital

Few places in the United States better exemplify how hospital mergers reshape healthcare than Asheville.

In 1998, the state authorized a deal that joined the city’s two acute-care hospitals, St. Joseph’s Hospital and Memorial Mission Medical Center, to create Mission Hospital. Ever since, its effects have been studied and its prices fiercely contested.

Data shows a strong link between hospital mergers and higher prices for procedures. By 2016, Mission Hospital had secured a monopoly in Buncombe County and successfully lobbied the state to drop limits on its profits. (Katie Linsky Shaw for KFF Health News)

Marcelle Crago, a nurse and lactation consultant, is one of many patients who have accused Mission Health, which operates Mission Hospital, of gouging consumers. Last year, she tweaked her knee while cross-country skiing.

“My knee went ‘pop, pop, pop,’” she recalled. She had torn her meniscus, the rubbery cartilage around the knee that acts as a shock absorber. A doctor advised her to have a portion of it removed.

Two days before the surgery, Mission Health told her the total charge would be over $9,000, according to paperwork on her case filed with the state’s Consumer Protection Division.

“I was shocked at the number,” she said.

Crago’s insurance policy from UnitedHealth Group had a high deductible, so she would have had to pay most of the cost. She decided to postpone the surgery and shop around, eventually arranging to have it done at an outpatient center not affiliated with Mission. There, the bill came to less than a third of the price Mission Health charged, according to paperwork she kept.

“The way Mission Health handled the whole thing felt predatory,” Crago recalled, noting that when she balked at the $9,000 figure, the hospital offered a 20% discount if she paid upfront. “It makes you wonder how much they are playing with prices.”

In responding to Crago’s complaint with the state, an attorney for Mission and HCA Healthcare, which owns the hospital, wrote that hospital charges “represent the cost for supporting the entire episode of care” and must cover the hospital’s investments in advanced technology, training, staff, and other critical needs.

“Patients are certainly entitled to ‘shop around’ for surgical procedures,” wrote the attorney, Phillip Jackson.

Marcelle Crago was cross-country skiing when she hurt her knee. She needed surgery and says she “was shocked” at the estimated $9,000 cost from Mission Health. (Katie Linsky Shaw for KFF Health News)

It is not just patients who bear the burden of rising hospital prices.

Over time, anyone who pays for health insurance pays a price for hospital monopolies, as insurers boost premiums as medical costs rise. The full cost for an employer to pay for an average family health insurance plan rose to more than $27,000 in 2025, up from $21,000 just six years ago, according to figures from KFF.

Around Asheville, employers and employees complain that their insurance premiums are higher because Mission’s prices are so high.

As the chef and co-founder of Cúrate restaurant in Asheville, a business with about 100 employees, Katie Button provides employee health coverage and believes she has been paying for Mission Hospital’s excessive prices, according to a pending class-action lawsuit she filed in 2021 with five residents who say the monopoly has harmed them.

Any insurance plan in Asheville must include Mission Hospital, she said, because it is the only one around. This makes the burden of its prices unavoidable.

“We are where we are because we don’t have a choice of hospitals,” Button said. “There is no other option.”

The steady creep of healthcare costs is top of mind not just in Asheville but for most U.S. voters, according to an April KFF poll. Nearly two-thirds of U.S. adults were worried about being able to afford healthcare, the poll found.

Yet while federal law allows regulators to step in and block mergers deemed to create monopolies, the FTC intervened in only about 1% of such cases from 2002 to 2020 to stop a hospital merger, according to a Yale University study. The FTC has since announced challenges to five other hospital mergers.

Birth of a Monopoly

When Mission Health was formed by a merger in 1998, state officials recognized that Asheville’s new dominant hospital system would have the power to raise prices and required Mission to sign an agreement to limit spending and profit margins.

Even with these restrictions, the hospital substantially hiked prices, according to economic research cited by the FTC. But Mission’s prices were about to go up even more. In 2015, Mission Health lobbied the state legislature to drop the state restrictions, abandoning the profit limits.

“After 20 years of the hospital behaving itself, the state decided to terminate its oversight,” said Mark Hall, a professor emeritus at Wake Forest University who has written an account of the hospital’s merger history. Then, three years later, HCA, the largest hospital corporation in the country, bought Mission Health. (The Dogwood Health Trust, a nonprofit established as part of HCA’s purchase of Mission Health, helps fund KFF Health News’ coverage.)

“This put a prepackaged monopoly into the hands of the world’s largest for-profit hospital corporation,” Hall said.

Across a range of services, Mission Hospital charges more than other North Carolina hospitals, according to figures from Serif Health.

Consider the prices that Mission negotiated with UnitedHealthcare compared with those the insurer pays at Catawba Valley Medical Center. For a breast biopsy, UnitedHealth pays $7,500 at Mission and $1,700 at Catawba, according to Serif. For a hernia repair, it pays $17,700 at Mission and $9,600 at Catawba.

“The prices hospitals charge are one of the leading drivers of rising healthcare costs,” according to a UnitedHealthcare statement sent by spokesperson Cole Manbeck.

Crago filed a complaint with the state’s Consumer Protection Division accusing Mission Health of excessive pricing when she needed knee surgery. (Katie Linsky Shaw for KFF Health News)

Mission spokesperson Katie Czerwinski, in a statement, said that it can be misleading to compare one hospital with another.

Mission Hospital is almost three times as large as Catawba Valley Health and is a Level 1 trauma center serving a different population, Czerwinski said. She also said that pulling individual rates for comparison paints an incomplete picture.

But other figures indicate that prices at Mission Hospital are relatively high, even when viewed collectively.

A team at the think tank Rand, led by Christopher Whaley, now a Brown University health economist, uses commercial insurance records to compare average hospital prices across the U.S. relative to those paid by Medicare. According to the Rand figures, Mission Hospital in 2024 charged prices that were 334% of prices set by Medicare. Catawba Valley Medical Center charged 237%. The state benchmark for prices is 280% of Medicare, Rand figures showed.

“The prices we pay for healthcare vary tremendously and are uncorrelated to the value we receive,” according to the Rand website.

For many in Asheville, the primary complaints about Mission Hospital focus on the quality of patient care. This is consistent with academic studies showing that the quality of care declines when hospitals have little competition.

Amid rising complaints about hospital services, North Carolina state Sen. Julie Mayfield, a Democrat, helped launch a nonprofit organization two years ago called Reclaim Healthcare WNC to hold Mission “accountable for its harmful practices.”

“Within a year of the HCA sale, I started hearing stories from physicians and other friends about all the terrible things that were happening there,” Mayfield said, most of them caused by severe staff cuts and physicians leaving.

Three times since 2024, state health inspectors working on behalf of CMS have issued “immediate jeopardy” findings to Mission Hospital, indicating problems so severe that they posed an imminent risk of serious injury or death to patients.

In the most recent CMS report, an 88-year-old woman recovering from a fall and hip surgery at Mission Hospital died after going a night without receiving a blood transfusion.

Czerwinski, the Mission Hospital spokesperson, said a proposed plan of correction “allows Mission to address the findings from the survey and complete a comprehensive review of operations.”

As more hospitals across the United States plan to merge, Mayfield said, the experience in Asheville represents a cautionary tale.

“Unregulated monopolies have never gone well for the public.”

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.

Democratic primary voters in Michigan chose former Detroit public health director Abdul El-Sayed as their Senate nominee this week. El-Sayed is one of several high-profile candidates around the country who have been pushing “Medicare for All,” again elevating the issue, at a time when millions of Americans are losing their health coverage because of high costs.

Meanwhile, the Senate this week confirmed Erica Schwartz to lead the Centers for Disease Control and Prevention, which has been without a permanent leader for almost a year. But it remains unclear whether her support for childhood vaccinations will run afoul of her boss, Health and Human Services Secretary Robert F. Kennedy Jr.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, Alice Miranda Ollstein of Politico, and Amanda Seitz of KFF Health News.

Panelists Joanne Kenen Johns Hopkins University and Politico @JoanneKenen @joannekenen.bsky.social Read Joanne's bio. Alice Miranda Ollstein Politico @AliceOllstein @alicemiranda.bsky.social Read Alice's stories. Amanda Seitz KFF Health News @AmandaSeitz Read Amanda's stories.

Among the takeaways from this week’s episode:

• El-Sayed’s primary victory in Michigan means a vocal supporter of Medicare for All will be on the ballot this fall. Progressives again are rallying behind universal healthcare as costs spike and more people lose their coverage — although there are few details so far to explain how they would implement such a policy.
• New polling shows more people are experiencing “job lock” because of limited options to obtain healthcare coverage outside employer-sponsored insurance. Meanwhile, more hospitals are reporting a sharp rise in the number of uninsured and in the costs to cover them.
• A federal judge recently declined to halt the implementation of Medicaid work requirements while considering a case brought by several states challenging the policy’s burden on sick people. And early reports out of Nebraska, the first state to implement the work requirements, show eligible people are losing coverage for administrative reasons.
• Kennedy sat down for an interview with CNN, during which he could not articulate specific plans to address disease outbreaks — as multiple outbreaks are ongoing. And a Senate committee voted along party lines Thursday to hold former public health official Anthony Fauci in contempt of Congress over his appearance before the committee last week.

Also this week, as part of the “How Would You Fix It?” series, Rovner interviews Sen. Andy Kim (D-N.J.), who has a new bill that would provide universal health coverage for all children.

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

Julie Rovner: The New York Times’ “Spotlight on Fauci Said To Boost Book Sales for Kennedy and His Publisher,” by Sheryl Gay Stolberg.  

Alice Miranda Ollstein: NOTUS’ “Rand Paul’s Fauci Diary Dump Exposed People’s Medical Histories,” by Margaret Manto.  

Joanne Kenen: The New York Times Magazine’s “The U.S. Relies on Family Caregivers. Millions of Them Are Kids,” by Helen Ouyang.  

Amanda Seitz: The Wall Street Journal’s “A Florida Surrogate, a Father in China, and the Babies Caught Between,” by Katherine Long.  

Also mentioned in this week’s podcast:

• The Bulwark’s “The ‘Medicare for All’ Test for Michigan Democrats,” by Jonathan Cohn.
• The New York Times’ “Uninsured Patients Rise Sharply, Hospitals Report, Citing Obamacare Cuts,” by Reed Abelson.
• Politico’s “Blanche Assures Anti-Abortion Supporters That Dobbs Will Be ‘Permanent in Every Single State,’” by Alice Miranda Ollstein and Josh Gerstein.
• Underlying Conditions’ “RFK Jr. on CNN: Fact-Checking the Measles and Autism Claims,” by Céline Gounder.

Credits Francis Ying Audio producer Taylor Cook Audio producer Emmarie Huetteman Editor

Click here to find all our podcasts.

And subscribe to “What the Health? From KFF Health News” on Apple Podcasts, Spotify, the NPR app, YouTube, Pocket Casts, or wherever you listen to podcasts.

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.

In this “How Would You Fix It?” interview, Julie Rovner, KFF Health News’ chief Washington correspondent and host of the What the Health? podcast, sat down with Sen. Andy Kim, a New Jersey Democrat, to discuss his proposal to grant all kids access to health coverage.

Kim, who serves on the Senate Health, Education, Labor and Pensions Committee, said it is “a real dereliction of our duty that we have not found a way to be able to ensure that every child is able to go see a doctor when they need to without breaking the bank.”

Under the senator’s proposal, children would be automatically enrolled at birth in the public program, which he has dubbed MediKids. Parents would have the option to opt their kids out, though they could reenroll them at any time until age 26, Kim told Rovner.

“You want to make sure that all of these kids are able to get the care that they need as their bodies are and their brains are developing and that you don’t see the kind of withdrawal of or restriction of care that could have real consequences down the road,” he said.

Kim said offering comprehensive, universal coverage to American children would help them avoid chronic conditions in adulthood, in addition to providing broader societal benefits, such as a healthier workforce.

He added that he hopes his idea could gain traction should Democrats claim a majority in Congress in the midterm elections, as well as foster an important discussion about healthcare in the 2028 presidential race.

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.

Vanessa Barahona received a call this past spring from Angelica at Kern Family Health Care in Bakersfield, California, telling her it was time to renew her coverage under Medi-Cal, the state’s version of Medicaid.

Angelica helped Barahona, 41, schedule an appointment to complete her paperwork in person at Kern Family’s offices before she submitted it to Kern County officials for approval. When Barahona had a conflict with her office-cleaning job, Angelica rescheduled the appointment. Barahona finished the process a little later than she’d planned but early enough to avoid an interruption in her coverage.

“It was easy. The fact that Angelica spoke Spanish when we were on the phone made it better,” Barahona, whom KFF Health News met through Kern Family Health Care, said via a translator. “It felt like I was talking to a real person.”

She definitely wasn’t.

“Angelica” is the name assigned to an AI program deployed last year by Kern Family Health Care, the largest provider of Medi-Cal services in Kern County. An estimated 52% of residents there rely on the safety net program for health coverage, among the highest enrollment rates in the state.

Kern Family has spent about $370,000 on the software from Careforce, a San Francisco startup, to facilitate rapid and repeated outreach to members when it’s time to renew their coverage — a process that is about to become more complex under new Medicaid eligibility rules established under Republicans’ One Big Beautiful Bill Act, signed into law last year by President Donald Trump. Mandatory work requirement documentation will take effect nationally beginning in 2027, and under the GOP’s new rules, most Medicaid patients will now have to renew their enrollment twice a year, rather than once a year.

Kern Family and other similar health plans have an interest in keeping people enrolled, since they’re paid through managed care contracts with Medi-Cal. They can also save money by using AI software to do what Kern says would otherwise require it to hire 40 full-time workers. Angelica does it at a fraction of the cost and without increasing payroll — or requiring Kern Family to navigate workers’ rights issues or government-mandated workplace protections.

Although Kern Family officials say no workers have lost jobs, the health plan, which is not unionized, estimated it would have had to spend $2.4 million in staffing costs to match the program’s more than 800,000 calls to its 387,000 members since Kern Family began using Angelica late last year.

As the federal government ended pandemic-era protections and states resumed screening people for Medicaid eligibility, health plans such as Kern Family began looking to technology to keep eligible people enrolled. Kern Family officials say that Angelica helps people, in their preferred language, set up appointments with the plan’s staffers, who make sure that applications are filled out correctly and delivered to county health officials for verification and processing.

Careforce CEO Huzaifa Sial said Kern Family is one of a few health insurers using his company’s software to help boost its Medi-Cal enrollment, and the company is also working with the Central California Alliance for Health in much the same way. “Most people don’t know what they need, and if they do, they have a hard time getting there,” Sial said. “That’s the hidden execution problem that nobody sees.”

“Angelica” is the name assigned to a conversational AI program deployed last year by California’s Kern Family Health Care, the largest provider of Medi-Cal services in Kern County. Kern Family has spent about $370,000 on the software by Careforce, a San Francisco startup, to facilitate rapid and repeated outreach to members when it’s time to renew their coverage. (Screengrab of Careforce.ai)

The rise of AI in the healthcare industry has prompted worries about who’s overseeing these tools and whether people are being improperly denied treatments or cut off from care. Unions have raised concerns about workplace surveillance and the prioritizing of savings over safety. Polling shows widespread fear over AI-driven job losses and growing income inequality, while health policy researchers have also raised red flags about algorithmic biases, transparency, data privacy, and safety risks.

Mark Duggan, a Stanford University economics professor who has studied the Medicaid system for 30 years, said one long-standing fear is that insurers could use such software to cherry-pick patients for coverage.

“When you have a new technology like this, you need to police it,” Duggan said.

Complying With Regulations

California health plan regulators say they are tracking AI use closely, and the state attorney general’s office has sent reminders to healthcare entities about their obligation to follow consumer protection rules.

Anthony Cava, a spokesperson for the state’s Department of Managed Health Care, said Medi-Cal health plans have flexibility in how they handle member renewals, including with the use of AI tools. But plans are responsible for ensuring that technology complies with state and federal regulations, including patient privacy and data security, he said.

Last year, the agency, foreseeing the huge volume of reenrollments that were going to be required in the state, began allowing managed care plans to contact members about renewals. State rules still prohibit Medi-Cal health plans from soliciting new enrollees, and only county health officials determine eligibility.

Emily Duran, CEO of Kern Health Services (which administers Kern Family), said that the plan worked closely with the Kern County Department of Human Services to obtain some data, allowing Kern Family to know when a member’s Medi-Cal eligibility will expire.

The health plan, in turn, lets the county know anytime it receives updated demographic or contact information for its Medi-Cal members. And the county has stationed workers inside Kern Family Health Care’s main facility in Bakersfield to answer enrollment questions for people who walk in to finish their paperwork.

“They have a leadership group that is very innovative and forward-thinking,” Vanessa Frando, the chief deputy director of Kern County Human Services, said of Kern Family. The agency also works closely with other Medi-Cal providers in the county, Frando said.

Duran said the health plan was initially concerned about how Angelica would be received.

“We had to set the tone to really be open to the idea, because you hear ‘AI’ and you’re like, ‘Oh, yeah, Jeff Bezos laid off 100,000 people because of that,’” Duran said. “But we are already stretched thin. We need this functionality to be much more effective and augment our efforts.”

Duran said Kern Family’s leadership and staff bought in after seeing a demonstration.

Today, it would take 40 Kern Family employees, each working 40 hours a week, to match Angelica’s calls to remind people to reenroll and talk them through what is involved, according to Jackie Byrd, a spokesperson for the health plan. The AI program’s settings are constantly adjusted to match the capacity of Kern Family’s full-time staff.

Full Conversations With AI

Barahona said she received a Medi-Cal packet in the mail but didn’t think about it until Angelica called days later. That exchange highlights one of local and state health officials’ biggest concerns — that people who’ve grown accustomed to automatic renewals aren’t aware of the reenrollment requirements.

Angelica speaks more than 30 languages and can answer lengthy questions. In samples of actual conversations provided to a reporter, Angelica sounded lifelike at first, although more than once cross-talk with a patient caused the program to pause suddenly. Barahona said it took her a minute before she realized she wasn’t speaking with a human, but she ended up having a full conversation with Angelica.

Duran said Kern Family was able to redirect full-time staff to focus on the more complex parts of the Medi-Cal process, such as making sure the patients’ information is complete and up to date. The Angelica software also operates at all hours, making it easier for patients to call back at their convenience. Another version, David, is used internally to help staffers navigate the technology.

“This will always be, in my opinion, an AI-human combination,” said Careforce’s Sial. Working with AI solutions for more than a decade at UnitedHealthcare and Optum, Sial said, he saw an opportunity to improve the enrollment process by helping people organize their paperwork.

Kern Family’s Medi-Cal renewal rate in April was 94.9%, delighting the plan’s officials, who feared a significant drop-off from patients who’d gotten used to being automatically renewed over the past several years. By comparison, Duran said that about 80% of enrollments had automatically renewed under federal pandemic-era rules, but that figure was cut in half as those protections began to expire.

Kern Family officials say there could be other uses for Careforce’s software in the future; Angelica, like other generative-AI large language models, can learn and adapt to new situations and requests.

Cesar Delgado, Kern Family’s chief information officer, said Angelica is already being used to make general greeting calls to new members and can discuss plan benefits and answer basic questions. But Kern Family officials say the program’s primary purpose, for now, is limited to contacting patients whose Medi-Cal eligibility is coming up for review.

Duggan, the Stanford professor, said Angelica could help Kern Family minimize the number of Medi-Cal enrollees who lose coverage as federal requirements take effect.

“The best-case scenario is helping people to stay on when they don’t realize that things are changing,” Duggan said. “It’s not an easy program to navigate.”

This article was produced in collaboration with Capital & Main, an independent, California-based nonprofit investigative news publication that reports on inequality, climate change and other issues.

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.

A century-old hospital near Michigan’s southern border was one of the nation’s first to convert into a new emergency-focused model Congress created to save rural care.

Afterward, though, use of Sturgis Hospital’s emergency department fell, according to data collected at the state level. In June, three years after taking the federal lifeline, the hospital closed, leaving residents of Sturgis, a town of about 11,000 people, without critical healthcare. Its leaders had tried “every reasonable option” to remain open, including seeking a buyer, according to a hospital news release.

The closure “could be kind of a canary in the coal mine” for rural healthcare, said Lauren LaPine-Ray, the vice president of policy and rural health at the Michigan Health & Hospital Association.

Federal leaders have spent decades trying to prop up rural hospitals, which face persistent staffing shortages, low federal payment rates, and declining patient numbers.

About 1,700 hospitals nationwide are eligible to convert to the stripped-down Rural Emergency Hospital model. So far, more than 50 rural hospitals in over 20 states have signed on, but LaPine-Ray and other hospital leaders nationwide fear Sturgis’ failure is a sign the new model won’t be enough to keep doors open when the anticipated federal funding losses arrive from President Donald Trump’s signature One Big Beautiful Bill Act.

Last year, the survival of rural hospitals became a central negotiating point as Congress debated the massive tax and spending law, which is expected to reduce Medicaid funding by more than $900 billion over 10 years. The reductions are expected to have a substantial impact in rural areas that often have high Medicaid enrollment. Republicans added the new $50 billion Rural Health Transformation Program to win votes from a few holdouts in their ranks.

Sturgis’ facility is the only rural U.S. hospital to completely close in 2026. The day before it shuttered, four senators — including Maine Republican Susan Collins, an architect of the rural health fund — sent a letter to Mehmet Oz, administrator of the Centers for Medicare & Medicaid Services. The letter said the way his agency structured the fund “may unintentionally disadvantage many of the rural hospitals and clinics the program was intended to support.”

Congress created the emergency hospital model, which took effect in 2023, as “a whole new way of providing care,” said George Pink, a senior research fellow at the Cecil G. Sheps Center for Health Services Research at the University of North Carolina-Chapel Hill. The Sheps Center tracks rural hospital closures and conversions, and Pink recently released early research showing converted hospitals reporting improved finances, though some are not yet in the black.

Hospitals that convert to the emergency model get a 5% boost in Medicare payments plus an extra monthly facility payment, totaling about $3.6 million a year, according to the Rural Health Redesign Center. In return, the hospitals must offer emergency services and give up their inpatient beds. They can continue offering outpatient services.

Janice Walters, CEO of the Rural Health Redesign Center, which has received federal funding to help hospitals change to the new model, said dozens of hospitals had reached out about converting during the first five months of 2026. It’s reasonable, she said, to presume that 10 or 11 might convert this year.

‘No Easy Answers’

More than 40% of all rural hospitals lose money, and hundreds have eliminated obstetrics, general surgery, and chemotherapy services, according to the healthcare consulting group Chartis.

Sen. Chuck Grassley (R-Iowa) sponsored the legislation that created the emergency hospital model. He touted the program last fall, pointing to hospitals such as Landmann-Jungman Memorial Hospital Avera in South Dakota, which he said would be able to use the model to enhance local health services.

Melissa Gale, the chief executive of the Scotland, South Dakota, hospital, said the facility averaged less than one inpatient a day and was “a little above or below break-even year-over-year for decades.”

Today, with additional federal funding from the emergency model, Gale said, the hospital could try to draw in more patients for mammograms and may add a wound care program. In the past year, the hospital has improved employee benefits and reinvested in the building, upgrading plumbing and the heating and air conditioning, she said.

“No one wants to see rural health fail,” Gale said, adding, “There’s no easy answers.”

Federal lawmakers have tried, and thus far failed, to update the emergency hospital model. One proposal, which is expected to be reintroduced, would allow converted hospitals to offer new services, such as beds for patients who need short-term recovery and in-house obstetric labor and delivery units. Another, which is in committee, would allow hospitals to use a federal drug discount program that many facilities use to generate revenue.

The current law is a “critical start, but it must evolve,” said Carrie Cochran-McClain, the chief policy officer for the National Rural Health Association, whose members include hospitals and clinics.

Residents of the southeastern Iowa town of Keokuk continue to hope their shuttered hospital will reopen under the program. The effort has been plagued by delays.

The Keokuk hospital went out of business in 2022 and was later purchased by a Michigan company that pledged to reopen it.

“It’s been a slower process than we envisioned,” said Insight Health Systems Vice President Dayne Walling. Many of the delays have been related to improvements needed to the aging building, he said. Without the emergency hospital model, Walling said, his company would not see a realistic path to reviving the hospital.

Walling said the emergency model would be even better if Congress approved the bill that would allow hospitals to make extra income from prescription medications.

Dierdra Sorrell, the CEO of Clifton-Fine Hospital in Star Lake, New York, said converting to an emergency hospital was not a “silver-bullet, magic pill.” But it “put us in a much better place.”

The 20-bed hospital lost more than $2.5 million annually before 2024, when it became New York’s first emergency hospital, Sorrell said. While converting, the hospital shut down inpatient beds and cut 20 employees.

The first year, Clifton-Fine lost only $600,000, and its emergency patient visits were “rock solid,” Sorrell said. The hospital also won state grant money to update its two-bed emergency room and pay for additions that could house visiting specialty doctors or new lines of services, such as a dental hygienist.

If Clifton-Fine had not converted, Sorrell said, anticipated Medicaid losses could have “put us under.”

‘One Important Tool’

Timothy Foster, a spokesperson for the Centers for Medicare & Medicaid Services, said the emergency model is “one important tool” for rural hospitals, “but each facility must determine whether this care model is appropriate.” Foster also said that the new five-year, $50 billion rural health fund was created to support “innovative, system-wide reforms” that strengthen the rural healthcare delivery system.

Of the 56 hospitals that have converted to the rural emergency model, two have closed, and three remain open but have changed what services they offer, according to Sheps.

In Holly Springs, Mississippi, Alliance HealthCare System was one of the first to convert to the emergency hospital designation, laying off staff and shutting down inpatient beds.

Then, federal officials said they made a mistake and required the hospital to recertify as a new hospital, a delay that cost an estimated $1.5 million in federal reimbursement, CEO Kenneth Williams said.

The hospital is “a shell of what it once was,” Williams said. The ER remains closed.

“We have survived, but survival has come at a tremendous cost,” he said.

Williams said he is closely watching the impact of upcoming Medicaid changes because cuts in insurance coverage or payments “ultimately affect patient access,” he said.

Sen. Josh Hawley (R-Mo.), who voted for the One Big Beautiful Bill Act — which included both the rural health fund and the Medicaid spending reductions — has asked for more support for rural hospitals. Ten full-service rural hospitals in Missouri have closed in the past 12 years, according to the Sheps Center.

Last year, Hawley introduced legislation to repeal the future Medicaid spending cuts. This June, he held a news conference to announce that he wanted to pay rural hospitals $1 million annually, or more if needed, to keep emergency rooms operating. A spokesperson said the bill would apply to all rural hospitals, including those using the emergency model.

Michigan’s Sturgis Hospital faced “some significant challenges” in 2023 when it converted to the emergency hospital model, said LaPine-Ray, of the state hospital association. In the news release, hospital officials said the closure was due to declining reimbursement rates, rising costs, and declining patient numbers. Bobby Morin, a former chief operating and financial officer at the hospital, declined to comment.

The hospital’s ER patient volume dropped 13% in the two years after it converted, LaPine-Ray said. Five rural hospitals have closed in the past 20 years in Michigan, and LaPine-Ray said she doubts the rural health fund Congress approved last year will stop the closures. The association, which worked with the governor’s office on the funding, expects less than 10% of Michigan’s $173 million in first-year rural health funding to trickle down to rural hospitals.

That money will pay for “very specific programs where rural hospitals have to create basically a new program and implement it with no funding on the front end,” LaPine-Ray said.

At the same time, she said, the association expects Michigan hospitals to lose $6 billion in Medicaid payments over the next decade because of the One Big Beautiful Bill Act.

“What’s it going to look like in the coming years?” LaPine-Ray 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.

LUMBERTON, N.C. — Soybean fields surround Angie Lowery’s home in Robeson County, on a plot of rural land in southeastern North Carolina. Dozens of antique gas station signs, 20 feet tall, dominate her front yard. A framed re-creation of The Last Supper, Lone Ranger posters, and a 3-foot-wide tobacco harvesting basket adorn the walls of her home. A collector, Lowery over the years has amassed remnants of her region’s past.

But behind the house, the 44-year-old’s backyard garden showcases her goals for the future, one that involves a long, healthy life with her kids: collard greens, bell peppers, onions, tomatoes, red and white potatoes, kale.

Like Lowery, many in the small towns of Lumberton and nearby Pembroke are citizens of the Lumbee Tribe who have dealt with heart conditions. The mother of four struggled with obesity and had to take insulin pills and shots daily. By when her first grandchild was born, in 2024, Lowery imagined her own life ending the way her biological father’s did: Daily insulin shots for diabetes. Kidney dialysis treatments at home. Dead of a heart attack at 63. She wanted her grandkids to remember her.

“If I don’t get this weight off me, if I don’t change my eating habits, it’s going to take me over,” she recalled thinking.

So, she expanded her garden. She cut fatty foods and sugary drinks out of her diet, stopped eating fried and fast food, and started moving more. She lost 120 pounds in two years and weaned herself off the daily insulin pills.

The Lumbee Tribe of North Carolina late last year became the 575th tribe to secure federal recognition as a sovereign nation, a milestone that leaders and citizens celebrated in tears. The designation provides federal funding for an array of services, including for healthcare. John Lowery, chairman of the tribe and a state representative, declared that “the biggest benefit” would be access to the Indian Health Service — its clinics and hospitals, as well as funding that it could provide for the tribe to create its own health system.

But Lumbee researchers and healthcare providers say that money won’t be enough. For decades, IHS has been chronically underfunded, with the agency’s budget workgroup estimating that it’s nearly $55 billion short of what it needs this year. And that was before the Trump administration’s cuts to other federal agencies further pinched IHS. Slashes to the Centers for Disease Control and Prevention last year initially included laying off nearly 1,000 IHS employees, and President Donald Trump’s proposed 2027 budget cuts more than $150 million for a program to address diabetes in Native American tribes.

The nearest IHS facility is more than a two-hour drive to another state for most of the 55,000 Lumbee citizens in Robeson County. The county is one of the poorest in the U.S. and has some of the worst health outcomes.

Robeson County is mostly rural, agricultural land. Most of the members of the Lumbee Tribe live in the small towns of Lumberton and Pembroke, both about a half-hour drive from the South Carolina border. (Andrew Jones/KFF Health News)

The Congressional Budget Office in 2022 estimated that the tribe could increase IHS spending by $247 million over four years.

The tribe will have to rely on other revenue sources that are now allowed through recognition, such as a casino, to reverse the health disparities their people have faced for decades, Lumbee researchers said.

“None of us can depend on IHS alone, because we just don’t have the resources within that system,” said Donald Warne, a physician, a researcher at the Johns Hopkins Center for Indigenous Health, and a member of the Oglala Lakota tribe. “But it’s a great starting point.”

The IHS did not respond to questions about plans for the tribe’s health system. John Lowery did not respond to requests for an interview or a list of questions, but he said on a June podcast that he expected healthcare to be the largest portion of the tribe’s budget.

Lowery makes beaded earrings, teaches culture classes, owns a gravestone business, and makes engravings in her Pembroke, North Carolina, shop. (Andrew Jones/KFF Health News) Antiques hang on Lowery’s walls at her home. She and her husband, Grant Hunt, are avid collectors. (Andrew Jones/KFF Health News)

‘Not Just Statistics’

Eighteen years ago, Andrea Blackburn, a doctor in Lumberton and a citizen of the tribe, was working at a nearby medical center. There, she said, she was taught that patients with certain last names “are often referred directly to cardiac catheterization,” a procedure to diagnose heart conditions.

Blackburn said she realized that common Lumbee surnames carried an expectation of disease.

“Nearly two decades later, I can tell you that reality has not changed,” she told assembled tribal leadership and citizens at a public hearing.

Robeson County’s rates of heart disease, diabetes, and risky substance use continue to rank among the highest in the state, Blackburn noted. In 2025, more than half of the county’s residents were Medicaid enrollees, the highest percentage of all counties in the state.

“But these are not just statistics to me,” she said. “These are my patients. These are our families.”

Andrea Blackburn, a citizen of the Lumbee Tribe, is a physician in Robeson County. (Andrew Jones/KFF Health News)

For Angie Lowery, breaking free from those statistics meant taking her health into her own hands.

She hopes a healthy diet is the answer to breaking her family’s cycle and living long enough to form relationships with her grandkids. And she brought the rest of the family with her. Her teenage daughter lost about 35 pounds. Two of her other children are now “health fanatics,” Lowery said.

Her granddaughter will be 2 in November. One Sunday morning in March, Lowery served up macaroni, cauliflower, and chickpeas for her as they spent the day together.

Lowery had supported building a casino, believing it would provide better education, infrastructure, and healthcare for her family.

“That vote, I’m thinking of my children’s future,” she said.

Lowery grows squash, onions, potatoes, and other produce in her backyard garden. Later this year, she’ll can some of the harvest for her family. (Andrew Jones/KFF Health News)

Casino Dreams in Limbo

Tribal citizens are deeply divided over how to reverse decades of economic decline that have led to poor living conditions, unaffordable health services, and chronic disease.

Four months after Trump signed the Lumbee Fairness Act — declaring “I love the Lumbee Tribe” — tribal leaders gathered at a business meeting to take the first steps toward building a casino and establishing gaming as a new revenue source. Hundreds of federally recognized tribes across 29 states have used gaming as a source of revenue, bringing in $43.9 billion in fiscal 2024, according to the latest report from the National Indian Gaming Commission.

The approach has been popular among tribal nations looking for more dollars to build up healthcare. The Choctaw Nation of Oklahoma in 1999 became the first tribe to build its own hospital, using roughly $25 million in gaming money, and the Eastern Band of Cherokee Indians in western North Carolina funded its own hospital in 2015 mostly with $82 million in gaming funds.

But the Lumbee Tribe’s effort to establish a casino collapsed in June.

More than 60% of voters rejected a Lumbee constitutional amendment that would have allowed tribal leaders to create infrastructure needed for a gaming business. John Lowery said on Facebook that he doesn’t plan on bringing back the initiative now that it was rejected “by the majority of Lumbee voters.” His term as chairman ends in two years.

A portrait of Lumbee Tribe Chairman John Lowery hangs beside a rendering of a proposed casino and resort meant to help bring in revenue for the newly federally recognized tribe. Citizens voted against the project. (Andrew Jones/KFF Health News)

Other funding sources to provide health services for the tribe could include gas stations or hotels, he said in a call with citizens before the vote.

Lumbee and other Native health researchers said they believe a twofold system — using IHS money and additional revenue — is necessary. Funds from gaming could compensate for what IHS can’t support.

Casinos’ impact on tribal health has been debated in research for decades. Studies show that the money from gaming helps tribes build more facilities, hire more doctors, and improve social services, but unhealthy substance use and smoking increase.

“There’s going to be negative impacts,” Brittany Locklear, a social work professor at the University of North Carolina and citizen of the Lumbee Tribe, said at a June panel discussion on gaming.

Ronny Bell, 62, a Lumbee citizen and a researcher studying Native health at UNC, said the community has felt ripple effects from systemic racism, having not been acknowledged as a tribal nation for so long, and the economic downturn following the loss of Robeson County’s manufacturing and tobacco jobs.

That history plays a part in the health statistics in Robeson today, Bell said. But with federal recognition, he said, the Lumbee people have achieved a victory they’ve fought for since 1888.

“I think about the resilience of the Lumbee people and how they’ve gone through this 100-plus-year fight for federal recognition,” Bell said. “I sort of see that as a continuation of this resilience, and how now we have this opportunity with federal recognition to bring in resources to help address those issues.”

The Lumbee Tribe government offices and citizen housing in Pembroke, North Carolina, stand amid long stretches of agricultural countryside. (Andrew Jones/KFF Health News)

Resolution and Uncertainty

Jada Brooks, a Lumbee citizen and UNC researcher who studies Indigenous health and lives in Robeson County, is conducting a study about heart health among Lumbee women. The initiative includes classes in which Lumbee women ages 18 to 50 signed up to discuss their health. That’s where she met Angie Lowery, who talked about her lifestyle changes with the group.

“I was just floored by, like, just the extent to which she went,” Brooks said.

She and other Lumbee researchers said federal recognition allows Lumbee citizens to be set apart in census data, paving a way to get clear information on heart health, cancer rates, diabetes diagnoses, and mental health risks.

“There’s challenges in even understanding the nuances of these complex health disparities, because a lot of data isn’t out there,” said Ryan Dial, a public health researcher at UNC and a member of the Lumbee Tribe.

But access and confidence may be the biggest barriers Lumbee people will have to overcome, Brooks said.

“I think what really matters is people feeling like they can trust the healthcare system.”

Brooks said she worried that a casino would encourage bad health habits, such as smoking and drinking.

“Let’s not create more problems for ourselves than we already have,” she said. She voted against the casino.

Like others in the tribe, Angie Lowery believes in her people’s power to help themselves, regardless of whether government steps in to help.

“Just because we’re federally recognized don’t mean that the doors are going to open up and money’s going to fall through the door like dirt,” she said.

Angie Lowery sits in her Ford F-250 reading the Lumbee Constitution on a hot June day. The tribe secured federal recognition in December 2025. (Andrew Jones/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.