Even by rural hospital standards, Keokuk County Hospital and Clinics in southeastern Iowa is small.

The 14-bed hospital, in Sigourney, doesn’t do surgeries or deliver babies. The small 24-hour emergency room is overseen by two full-time doctors.

CEO Matt Ives wants to hire a third doctor, but he said finding physicians for a rural area has been challenging since the covid-19 pandemic. He said several physicians at his hospital have retired since the start of the pandemic, and others have decided to stop practicing certain types of care, particularly emergency care.

Another rural hospital is down the road, about a 40-minute drive east. Washington County Hospital and Clinics has 22 beds and is experiencing similar staffing struggles. “Over the course of the last few years, we’ve had not only the pandemic, but we’ve had kind of an aging physician workforce that has been retiring,” said Todd Patterson, CEO.

The pandemic was difficult for health workers. Many endured long hours, and the stresses on the nation’s health care system prompted more workers than usual to quit or retire.

“There’s a chunk of workers that were lost and won’t come back,” said Joanne Spetz, who directs the Institute for Health Policy Studies at the University of California-San Francisco. “For a lot of the clinicians that decided and were able to stick it out and work through the pandemic, they have burned out,” Spetz said.

Five years after the World Health Organization declared covid a global pandemic and the first Trump administration announced a national emergency, the United States faces a crucial shortage of medical providers, below the projected need for an aging population.

That could have lasting effects on care, particularly in states like Iowa with significant rural populations. Experts say the problem has been building for a while, but the effects of the pandemic accelerated the shortages by pushing many doctors over the edge into early retirement or other fields.

“Some of them made it through covid like ‘Let’s get us through this public health crisis,’ and then they came out of it saying, ‘OK, and now? Now I’m exhausted,’” said Christina Taylor, president of the Iowa Medical Society.

“Iowa is absolutely in the middle of a physician shortage,” Taylor said. “It’s a true crisis for us. We’re actually 44th in the country in terms of patient-to-physician ratio.”

A 2022 survey by the Centers for Disease Control and Prevention found a significant jump in health workers who reported feeling burned out and wanting a new job, compared with 2018. The number of people in health care has grown since the start of the pandemic, said Janette Dill, an associate professor at the University of Minnesota’s School of Public Health, but the growth has not happened fast enough.

“We have an aging population. We have a lot of needs,” she said.

The Association of American Medical Colleges projected last year that the U.S. faces a shortage of up to 86,000 physicians by 2036 — if lawmakers don’t invest more money in training doctors.

These shortages could push more people to seek care in ERs when they can’t see a local doctor, said Michael Dill, director of workforce studies at the AAMC.

“We’re already at a point where tens of millions of Americans every year can’t get medical care when they need it,” said Dill (no relation to Janette Dill). “If the shortage is sustained or gets even worse, then that problem gets worse too, and it disproportionately negatively impacts the most vulnerable amongst us.”

Iowa lawmakers made addressing the shortage a priority in the current legislative session. They introduced bills aimed at increasing medical student loan forgiveness and requesting federal help to add residency training slots for medical students in the state.

Last year, Gov. Kim Reynolds signed a bill into law that drops the residency requirement for some doctors who trained abroad to get a medical license. Lawmakers in at least eight other states have approved similar changes.

Patterson, of the Washington County hospital, appreciates that Iowa lawmakers are trying to increase the pipeline of doctors into Iowa but said it doesn’t address immediate shortages.

“You have a high school student who’s graduating right now; they’re probably nine to 11 years away from entering the workforce as a practicing physician. So it’s a long-term kind of problem,” he said.

For nurses, workforce experts say, the projected national outlook isn’t as dire as in recent years.

“Nursing education is back up. Nursing employment rates are back up. I think, for that workforce, we’ve largely nationally recovered from all the dislocations that occurred,” said Spetz, of the Institute for Health Policy Studies.

But getting nurses to move to the places that need them, like rural communities, will be difficult, she said.

Some rural hospitals in Iowa say an even bigger challenge right now is finding nurses to hire.

Some of that can be traced to the pandemic, said Sara Bruns, nurse manager at Keokuk County Hospital and Clinics. She recalled that some covid patients in critical condition died when they couldn’t be transferred to larger hospitals with more advanced intensive care unit equipment, because those hospitals didn’t have the staff to take on more patients.

“We had to make the horrible decision of ‘You’re probably not going to make it,’” Bruns recalled, saying many patients were then listed as DNR, for “do not resuscitate.”

“That took a big toll on a lot of nurses,” she said.

Another problem is persuading the area’s young nurses to stay, when they would rather live and work in more urban areas, Bruns said.

Her hospital still relies on contracts with travel nurses to fill some night shifts. That’s something the hospital never had to do before the pandemic, Bruns said. Travel nurses are more expensive, adding stress to a small hospital’s budget.

“I think some people just completely got out of nursing,” Bruns said. The pandemic took a special toll “because of the hours that they had to work, the conditions that they had to work.”

Policymakers and health care organizations can’t focus only on recruiting workers, according to Janette Dill at the University of Minnesota. “You also have to retain workers,” she said. “You can’t just recruit new people and then have them be miserable.”

Dill said workers report feeling that patients have been more disrespectful and challenging since the pandemic, and sometimes workers feel unsafe at work. “By ‘unsafe’ I mean physically unsafe. I think that is a very stressful part of the job,” she said.

Research has shown health workers reporting higher levels of burnout and poor mental health since the pandemic — though the risks decreased if workers felt supported by their managers.

Gail Grimes, an intensive care nurse in Des Moines, felt more supported by her employer during the worst parts of the pandemic than she does now, she said. Some hospitals offered pay bumps and more scheduling flexibility to keep nurses on staff.

“We were getting better bonus pay,” Grimes recalled. “We were getting these specialized contracts we could fulfill that were often more worth our time to be able to come in, to miss our families and be there.”

Grimes said she’s seen nurses leave Iowa for neighboring states with better average pay. This creates shortages that she believes affect the care she gives her own patients.

“A nurse taking care of five patients will always be able to provide better care than a nurse taking care of 10 patients,” she said.

She thinks many hospitals have simply accepted staff burnout as a fact, rather than try to prevent it.

“It really is significantly impactful to your mental health when you come home every day and you feel guilty about the things you have not been able to provide to people,” she said.

This article is from a partnership that includes IPR, 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.

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The Host Emmarie Huetteman KFF Health News Emmarie Huetteman, senior editor, oversees a team of Washington reporters, as well as “Bill of the Month” and KFF Health News’ “What the Health?” She previously spent more than a decade reporting on the federal government, most recently covering surprise medical bills, drug pricing reform, and other health policy debates in Washington and on the campaign trail. 

The secretary of Health and Human Services, Robert F. Kennedy Jr., contradicted his agency’s researchers this week with unsubstantiated or outright false claims about autism spectrum disorder and those with the condition. His public remarks were not the only recent example of Kennedy speaking against his employees; during an introductory appearance at the FDA, Kennedy said the staff — reeling from the layoffs of 3,500 colleagues — had become beholden to the industries they regulate.

Meanwhile, President Donald Trump issued an executive order aimed at lowering drug prices as his administration signaled that tariffs on pharmaceuticals and pharmaceutical ingredients could be on deck. And new data shows that the number of abortions performed nationwide increased slightly last year, as travel and telehealth prescribing maintained access for some patients in states with abortion bans.

This week’s panelists are Emmarie Huetteman of KFF Health News, Anna Edney of Bloomberg News, Jessie Hellmann of CQ Roll Call, and Shefali Luthra of The 19th.

Panelists Anna Edney Bloomberg News @annaedney @annaedney.bsky.social Read Anna's stories. Jessie Hellmann CQ Roll Call @jessiehellmann @jessiehellmann.bsky.social Read Jessie's stories. Shefali Luthra The 19th @shefali.bsky.social Read Shefali's stories.

Among the takeaways from this week’s episode:

• Kennedy’s claim that genetics do not play a role in the development of autism contradicts decades of scientific inquiry into the disorder — including the work of his agency’s own researchers, at the Centers for Disease Control and Prevention, who say there is indeed a genetic component to autism. Further, his striking remarks about the severe limitations of those with the disorder do not reflect reality for the many people living with autism.
• Trump’s executive order to lower drug prices calls for changes to the Medicare drug negotiation program that could instead increase costs for the federal government. It also calls for the FDA to make it easier for states to import drugs from other countries, including Canada — but, among other things, the introduction of tariffs on drugs and drug ingredients could negate other efforts to lower prices.
• And the picture of federal health cuts is still coming into focus, as people throughout the health care system grapple with the effects of slashing government efforts to do things like help Americans afford utility bills, monitor the spread of hepatitis, and much — much — more.

Also this week, Julie Rovner of KFF Health News interviews Krista Harrison and Robbie Zimbroff, health policy researchers at the University of California-San Francisco. They share some background on a case before the Supreme Court next week, Kennedy v. Braidwood Management, which challenges the ability of the U.S. Preventive Services Task Force to make expert recommendations for American health.

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

Emmarie Huetteman: KFF Health News’ “States Push Medicaid Work Rules, but Few Programs Help Enrollees Find Jobs,” by Sam Whitehead, Phil Galewitz, and Katheryn Houghton.

Anna Edney: ProPublica’s “Unsanitary Practices Persist at Baby Formula Factory Whose Shutdown Led to Mass Shortages, Workers Say,” by Heather Vogell.

Jessie Hellmann: The Hill’s “Military’s Use of Toxic ‘Forever Chemicals’ Leaves Lasting Scars,” by Sharon Udasin and Rachel Frazin.

Shefali Luthra: The 19th’s “Trump’s Push for ‘Beautiful Clean Coal’ Could Lead to More Premature Births,” by Jessica Kutz.

Also mentioned in this week’s podcast:

• KFF Health News’ “Trump HHS Eliminates Office That Sets Poverty Levels Tied to Benefits for at Least 80 Million People,” by Arthur Allen.
• Wired’s “HHS Systems Are in Danger of Collapsing, Workers Say,” by David Gilbert.
• Wired’s “Elon Musk’s DOGE Is Getting Audited,” by Leah Feiger and Tim Marchman.

Credits Francis Ying Audio producer Stephanie Stapleton Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, 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.

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The National Institutes of Health’s sweeping cuts of grants that fund scientific research are inflicting pain almost universally across the U.S., including in most states that backed President Donald Trump in the 2024 election.

A KFF Health News analysis underscores that the terminations are sparing no part of the country, politically or geographically. About 40% of organizations whose grants the NIH cut in its first month of slashing, which started Feb. 28, are in states Trump won in November.

The Trump administration has singled out Ivy League universities including Columbia and Harvard for broad federal funding cuts. But the spending reductions at the NIH, the nation’s foremost source of funding for biomedical research, go much further: Of about 220 organizations that had grants terminated, at least 94 were public universities, including flagship state schools in places such as Florida, Georgia, Ohio, Nebraska, and Texas.

The Trump administration has canceled hundreds of grants supporting research on topics such as vaccination; diversity, equity, and inclusion; and the health of LGBTQ+ populations. Some of the terminations are a result of Trump’s executive orders to abandon federal work on diversity and equity issues. Others followed the Senate confirmation of anti-vaccine activist Robert F. Kennedy Jr. to lead the Department of Health and Human Services, which oversees the NIH. Many mirror the ambitions laid out in Project 2025’s “Mandate for Leadership,” the conservative playbook for Trump’s second term.

Affected researchers say Trump administration officials are taking a cudgel to efforts to improve the lives of people who often experience worse health outcomes — ignoring a scientific reality that diseases and other conditions do not affect all Americans equally.

KFF Health News found that the NIH terminated about 780 grants or parts of grants between Feb. 28 and March 28, based on documents published by the Department of Health and Human Services and a list maintained by academic researchers. Some grants were canceled in full, while in other cases, only supplements — extra funding related to the main grant, usually for a shorter-term, related project — were terminated.

Among U.S. recipients, 96 of the institutions that lost grants in the first month are in politically conservative states including Florida, Ohio, and Indiana, where Republicans control the state government or voters reliably support the GOP in presidential campaigns, or in purple states such as North Carolina, Michigan, and Pennsylvania that were presidential battleground states. An additional 124 institutions are in blue states.

Sybil Hosek, a research professor at the University of Illinois-Chicago, helps run a network that focuses on improving care for people 13 to 24 years old who are living with or at risk for HIV. The NIH awarded Florida State University $73 million to lead the HIV project.

“We never thought they would destroy an entire network dedicated to young Americans,” said Hosek, one of the principal investigators of the Adolescent Medicine Trials Network for HIV/AIDS Interventions. The termination “doesn’t make sense to us.”

NIH official Michelle Bulls is director of the Office of Policy for Extramural Research Administration, which oversees grants policy and compliance across NIH institutes. In terminating the grant March 21, Bulls wrote that research “based primarily on artificial and nonscientific categories, including amorphous equity objectives, are antithetical to the scientific inquiry, do nothing to expand our knowledge of living systems, provide low returns on investment, and ultimately do not enhance health, lengthen life, or reduce illness.”

Adolescents and young adults ages 13 to 24 accounted for 1 in 5 new HIV infections in the U.S. in 2022, according to the Centers for Disease Control and Prevention.

“It’s science in its highest form,” said Lisa Hightow-Weidman, a professor at Florida State University who co-leads the network. “I don’t think we can make America healthy again if we leave youth behind.”

HHS spokesperson Emily Hilliard said in an emailed statement that “NIH is taking action to terminate research funding that is not aligned with NIH and HHS priorities.” The NIH and the White House didn’t respond to requests for comment.

“As we begin to Make America Healthy Again, it's important to prioritize research that directly affects the health of Americans. We will leave no stone unturned in identifying the root causes of the chronic disease epidemic as part of our mission to Make America Healthy Again,” Hilliard said.

Harm to HIV, Vaccine Studies

The NIH, with its nearly $48 billion annual budget, is the largest public funder of biomedical research in the world, awarding nearly 59,000 grants in the 2023 fiscal year. The Trump administration has upended funding for projects that were already underway, stymied money for new applications, and sought to reduce how much recipients can spend on overhead expenses.

Those changes — plus the firing of 1,200 agency employees as part of mass layoffs across the government — are alarming scientists and NIH workers, who warn that they will undermine progress in combating diseases and other threats to the nation’s public health. On April 2, the American Public Health Association, Ibis Reproductive Health, and affected researchers, among others, filed a lawsuit in federal court against the NIH and HHS to halt the grant cancellations.

Two National Cancer Institute employees, who were granted anonymity because they were not authorized to speak to the press and feared retaliation, said its staff receives batches of grants to terminate almost daily. On Feb. 27, the cancer institute had more than 10,800 active projects, the highest share of the NIH’s roughly two dozen institutes and centers, according to the NIH’s website. At least 47 grants that NCI awarded were terminated in the first month.

Kennedy has said the NIH should take a years-long pause from funding infectious disease research. In November 2023, he told an anti-vaccine group, “I’m gonna say to NIH scientists, ‘God bless you all. Thank you for public service. We’re going to give infectious disease a break for about eight years,’” according to NBC News.

For years, Kennedy has peddled falsehoods about vaccines — including that “no vaccine” is “safe and effective,” and that “there are other studies out there” showing a connection between vaccines and autism, a link that has repeatedly been debunked — and claimed falsely that HIV is not the only cause of AIDS.

KFF Health News found that grants in blue states were disproportionately affected, making up roughly two-thirds of terminated grants, many of them at Columbia University. The university had more grants terminated than all organizations in politically red states combined. On April 4, Democratic attorneys general in 16 states sued HHS and the NIH to block the agency from canceling funds.

Researchers whose funding was stripped said they stopped clinical trials and other work on improving care for people with HIV, reducing vaping and smoking rates among LGBTQ+ teens and young adults, and increasing vaccination rates for young children. NIH grants routinely span several years.

For example, Hosek said that when the youth HIV/AIDS network’s funding was terminated, she and her colleagues were preparing to launch a clinical trial examining whether a particular antibiotic that is effective for men to prevent sexually transmitted infections would also work for women.

“This is a critically important health initiative focused on young women in the United States,” she said. “Without that study, women don’t have access to something that men have.”

Other scientists said they were testing how to improve health outcomes among newborns in rural areas with genetic abnormalities, or researching how to improve flu vaccination rates among Black children, who are more likely to be hospitalized and die from the virus than non-Hispanic white children.

“It's important for people to know that — if, you know, they are wondering if this is just a waste of time and money. No, no. It was a beautiful and rare thing that we did,” said Joshua Williams, a pediatric primary care doctor at Denver Health in Colorado who was researching whether sharing stories about harm experienced due to vaccine-preventable diseases — from missed birthdays to hospitalizations and job loss — might inspire caregivers to get their children vaccinated against the flu.

He and his colleagues had recruited 200 families, assembled a community advisory board to understand which vaccinations were top priorities, created short videos with people who had experienced vaccine-preventable illness, and texted those videos to half of the caregivers participating in the study.

They were just about to crack open the medical records and see if it had worked: Were the group who received the videos more likely to follow through on vaccinations for their children? That’s when he got the notice from the NIH.

“It is the policy of NIH not to prioritize research activities that focuses gaining scientific knowledge on why individuals are hesitant to be vaccinated and/or explore ways to improve vaccine interest and commitment,” the notice read.

Williams said the work was already having an impact as other institutions were using the idea to start projects related to cancer and dialysis.

A Hit to Rural Health

Congress previously tried to ensure that NIH grants also went to states that historically have had less success obtaining biomedical research funding from the government. Now those places aren’t immune to the NIH’s terminations.

Sophia Newcomer, an associate professor of public health at the University of Montana, said she had 18 months of work left on a study examining undervaccination among infants, which means they were late in receiving recommended childhood vaccines or didn’t receive the vaccines at all. Newcomer had been analyzing 10 years of CDC data about children’s vaccinations and had already found that most U.S. infants from 0 to 19 months old were not adequately vaccinated.

Her grant was terminated March 10, with the NIH letter stating the project “no longer effectuates agency priorities,” a phrase replicated in other termination letters KFF Health News has reviewed.

“States like Montana don’t get a lot of funding for health research, and health researchers in rural areas of the country are working on solutions to improve rural health care,” Newcomer said. “And so cuts like this really have an impact on the work we’re able to do.”

Montana is one of 23 states, along with Puerto Rico, that are eligible for the NIH’s Institutional Development Award program, meant to bolster NIH funding in states that historically have received less investment. Congress established the program in 1993.

The NIH’s grant terminations hit institutions in 15 of those states, more than half that qualify, plus Puerto Rico.

Researchers Can’t ‘Just Do It Again Later’

The NIH’s research funds are deeply entrenched in the U.S. health care system and academia. Rarely does an awarded grant stay within the four walls of a university that received it. One grant’s money is divvied up among other universities, hospitals, community nonprofits, and other government agencies, researchers said.

Erin Kahle, an infectious disease epidemiologist at the University of Michigan, said she was working with Emory University in Georgia and the CDC as part of her study. She was researching the impact of intimate partner violence on HIV treatment among men living with the virus. “They are relying on our funds, too,” she said.

Kahle said her top priority was to ethically and safely wind down her nationwide study, which included 418 people, half of whom were still participating when her grant was terminated in late March. Kahle said that includes providing resources to participants for whom sharing experiences of intimate partner violence may cause trauma or mental health distress.

Rachel Hess, the co-director of the Clinical & Translational Science Institute at the University of Utah, said the University of Nevada-Reno and Intermountain Health, one of the largest hospital systems in the West, had received funds from a $38 million grant that was awarded to the University of Utah and was terminated March 12.

The institute, which aims to make scientific research more efficient to speed up the availability of treatments for patients, supported over 5,000 projects last year, including 550 clinical trials with 7,000 participants. Hess said that, for example, the institute was helping design a multisite study involving people who have had heart attacks to figure out the ideal mix of medications “to keep them alive” before they get to the hospital, a challenge that’s more acute in rural communities.

After pushback from the university — the institute’s projects included work to reduce health care disparities between rural and urban areas — the NIH restored its grant March 29.

Among the people the Utah center thanked in its announcement about the reversal were the state’s congressional delegation, which consists entirely of Republican lawmakers. “We are grateful to University of Utah leadership, the University of Utah Board of Trustees, our legislative delegation, and the Utah community for their support,” it said.

Hilliard, of HHS, said that “some grants have been reinstated following the appeals process, and the agency will continue to carry out the remaining appeals as planned to determine their alignment.” She declined to say how many had been reinstated, or why the University of Utah grant was among them.

Other researchers haven’t had the same luck. Kahle, in Michigan, said projects like hers can take a dozen years from start to finish — applying for and receiving NIH funds, conducting the research, and completing follow-up work.

“Even if there are changes in the next administration, we’re looking at at least a decade of setting back the research,” Kahle said. “It’s not as easy as like, ‘OK, we’ll just do it again later.’ It doesn’t really work that way.”

Methodology

KFF Health News analyzed National Institutes of Health grant data to determine the states and organizations most affected by the Trump administration’s cuts.

We tallied the number of terminated NIH grants using two sources: a Department of Health and Human Services list of terminated grants published April 4; and a crowdsourced list maintained by Noam Ross of rOpenSci and Scott Delaney of the Harvard T.H. Chan School of Public Health, as of April 8. We focused on the first month of terminations: from Feb. 28 to March 28. We found that 780 awards were terminated in total, with 770 of them going to recipients based in U.S. states and two to recipients in Puerto Rico.

The analysis does not account for potential grant reinstatements, which we know happened in at least one instance.

Additional information on the recipients, such as location and business type, came from the USAspending.gov Award Data Archive.

There were 222 U.S. recipients in total. At least 94 of them were public higher education institutions. Forty-one percent of organizations that had NIH grants cut in the first month were in states that President Donald Trump won in the 2024 election.

Some recipients, including the University of Texas MD Anderson Cancer Center and Vanderbilt University Medical Center, are medical facilities associated with higher education institutions. We classified these as hospitals/medical centers.

We also wanted to see whether the grant cuts affected states across the political spectrum. We generally classified states as blue if Democrats control the state government or Democratic candidates won them in the last three presidential elections, and red if they followed this pattern but for Republicans. Purple states are generally presidential battleground states or those where voters regularly split their support between the two parties: Arizona, Michigan, Nevada, New Hampshire, North Carolina, Pennsylvania, Virginia, and Wisconsin. The result was 25 red states, 17 blue states, and eight purple states. The District of Columbia was also blue.

We found that, of affected U.S. institutions, 96 were in red or purple states and 124 were in blue states.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Michele Andrews had been seeing her internist in Northampton, Massachusetts, a small city two hours west of Boston, for about 10 years. She was happy with the care, though she started to notice it was becoming harder to get an appointment.

“You’d call and you’re talking about weeks to a month,” Andrews said.

That’s not surprising, as many workplace surveys show the supply of primary care doctors has fallen well below the demand, especially in rural areas such as western Massachusetts. But Andrews still wasn’t prepared for the letter that arrived last summer from her doctor, Christine Baker, at Pioneer Valley Internal Medicine.

“We are writing to inform you of an exciting change we will be making in our Internal Medicine Practice,” the letter read. “As of September 1st, 2024, we will be switching to Concierge Membership Practice.”

Concierge medicine is a business model in which a doctor charges patients a monthly or annual membership fee — even as the patients continue paying insurance premiums, copays, and deductibles. In exchange for the membership fee, doctors limit their number of patients.

Many physicians who’ve made the change said it resolved some of the pressures they faced in primary care, such as having too many patients to see in too short a time.

Andrews was floored when she got the letter. “The second paragraph tells me the yearly fee for joining will be $1,000 per year for existing patients. It’ll be $1,500 for new patients,” she said.

Although numbers are not tracked in any one place, the trade magazine Concierge Medicine Today estimates there are 7,000 to 22,000 concierge physicians in the U.S. Membership fees range from $1,000 to as high as $50,000 a year.

Critics say concierge medicine helps only patients who have extra money to spend on health care, while shrinking the supply of more traditional primary care practices in a community. It can particularly affect rural communities already experiencing a shortage of primary care options.

Andrews and her husband had three months to either join and pay the fee or leave the practice. They left.

“I’m insulted and I’m offended,” Andrews said. “I would never, never expect to have to pay more out of my pocket to get the kind of care that I should be getting with my insurance premiums.”

Baker, Andrews’ former physician, said fewer than half her patients opted to stay — shrinking her patient load from 1,700 to around 800, which she considers much more manageable. Baker said she had been feeling so stressed that she considered retiring.

“I knew some people would be very unhappy. I knew some would like it,” she said. “And a lot of people who didn’t sign up said, ‘I get why you’re doing it.’”

Patty Healey, another patient at Baker’s practice, said she didn’t consider leaving.

“I knew I had to pay,” Healey said. As a retired nurse, Healey knew about the shortages in primary care, and she was convinced that if she left, she’d have a very difficult time finding a new doctor. Healey was open to the idea that she might like the concierge model.

“It might be to my benefit, because maybe I’ll get earlier appointments and maybe I’ll be able to spend a longer period of time talking about my concerns,” she said.

This is the conundrum of concierge medicine, according to Michael Dill, director of workforce studies at the Association of American Medical Colleges. The quality of care may go up for those who can and do pay the fees, Dill said. “But that means fewer people have access,” he said. “So each time any physician makes that switch, it exacerbates the shortage.”

His association estimates the U.S. will face a shortage of 20,200 to 40,400 primary care doctors within the next decade.

A state analysis found that the percentage of residents in western Massachusetts who said they had a primary care provider was lower than in several other regions of the state.

Dill said the impact of concierge care is worse in rural areas, which often already experience physician shortages. “If even one or two make that switch, you’re going to feel it,” Dill said.

Rebecca Starr, an internist who specializes in geriatric care, recently started a concierge practice in Northampton.

For many years, she consulted for a medical group whose patients got only 15 minutes with a primary care doctor, “and that was hardly enough time to review medications, much less manage chronic conditions,” she said.

When Starr opened her own medical practice, she wanted to offer longer appointments — but still bring in enough revenue to make the business work.

“I did feel a little torn,” Starr said. While it was her dream to offer high-quality care in a small practice, she said, “I have to do it in a way that I have to charge people, in addition to what insurance is paying for.”

Starr said her fee is $3,600 a year, and her patient load will be capped at 200, much lower than the 1,000 or even 2,000 patients that some doctors have. But she still hasn’t hit her limit.

“Certainly there’s some people that would love to join and can’t join because they have limited income,” Starr said.

Many doctors making the switch to concierge medicine say the membership model is the only way to have the kind of personal relationships with patients that attracted them to the profession in the first place.

“It’s a way to practice self-preservation in this field that is punishing patients and doctors alike,” said internal medicine physician Shayne Taylor, who recently opened a practice offering “direct primary care” in Northampton. The direct primary care model is similar to concierge care in that it involves charging a recurring fee to patients, but direct care bypasses insurance companies altogether.

Taylor’s patients, capped at 300, pay her $225 a month for basic primary care visits — and they must have health insurance to cover care such as X-rays and medications, which her practice does not provide. But Taylor doesn’t accept insurance for any of her services, which saves her administrative costs.

“We get a lot of pushback because people are saying, ‘Oh, this is elitist, and this is only going to be accessible to people that have money,’” Taylor said.

But she said the traditional primary care model doesn’t work. “We cannot spend so much time seeing so many patients and documenting in such a way to get an extra $17 from the insurance company.”

While much of the pushback on the membership model comes from patients and policy experts, some of the resistance comes from physicians.

Paul Carlan, a primary care doctor who runs Valley Medical Group in western Massachusetts, said his practice is more stretched than ever. One reason is that the group’s clinics are absorbing some of the patients who have lost their doctor to concierge medicine.

“We all contribute through our tax dollars, which fund these training programs,” Carlan said.

“And so, to some degree, the folks who practice health care in our country are a public good,” Carlan said. “We should be worried when folks are making decisions about how to practice in ways that reduce their capacity to deliver that good back to the public.”

But Taylor, who has the direct primary care practice, said it’s not fair to demand that individual doctors take on the task of fixing a dysfunctional health care system.

“It’s either we do something like this,” Taylor said, “or we quit.”

This article is from a partnership that includes New England Public Media, 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.

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This story can be republished for free (details).

For many years, Eric Wunderlin’s health issues made it hard to find stable employment.

Struggling to manage depression and diabetes, Wunderlin worked part-time, minimum-wage retail jobs around Dayton, Ohio, making so little he said he sometimes had to choose between paying rent and buying food.

But in 2018, his CareSource Medicaid health plan offered him help getting a job. It connected him to a life coach, who helped him find full-time work with health benefits. Now, he works for a nonprofit social service agency, a job he said has given him enough financial stability to plan a European vacation next year.

“I feel like a real person and I can go do things,” said Wunderlin, 42. “I feel like I pulled myself out of that slump.”

Republicans in Congress and several states, including Ohio, Iowa, and Montana, are pushing to implement work requirements for nondisabled adults, arguing a mandate would encourage enrollees to find jobs. And for Republicans pushing to require Medicaid enrollees to work, Wunderlin’s story could be held up as evidence that government health coverage can help people find employment and, ultimately, reduce their need for public assistance.

Yet his experience is rare. Medicaid typically does not offer such help, and when states do try to help, such efforts are limited.

And opponents point out that most Medicaid recipients already have jobs and say such a mandate would only kick eligible people off Medicaid, rather than improve their economic prospects. Nearly two-thirds of Medicaid enrollees work, with most of the rest acting as caregivers, going to school, or unable to hold a job due to disability or illness, according to KFF, a health information nonprofit that includes KFF Health News.

Existing efforts to help Medicaid recipients get a job have seen limited success because there’s not a lot of “room to move the needle,” said Ben Sommers, a professor of health care economics at the Harvard T.H. Chan School of Public Health. Most Medicaid enrollees already work — just not in jobs with health benefits, he said.

“The ongoing argument that some folks make is that there are a lot of people freeloading in Medicaid,” he said. “That’s just not supported by the evidence.”

Using Health Programs To Encourage Work

The GOP-controlled Congress could allow or require states to implement a Medicaid work requirement as part of revamping and downsizing Medicaid. The first Trump administration encouraged those work mandates, but many were struck down by federal judges who said they were illegal under federal law.

Policy experts and state officials say more attention should be paid to investments that have helped people find better jobs — from personalized life coaching to, in some cases, health plans’ directly hiring enrollees.

They argue work requirements alone are not enough. “The move to economic mobility requires a ladder, not a stick,” said Farah Khan, a fellow with the Brookings Institution, a nonpartisan think tank.

While Medicaid work requirements have been debated for decades, the issue has become more heated as 40 states and Washington, D.C., have expanded Medicaid eligibility under the Affordable Care Act to the vast majority of low-income adults. More than 20 million adults have gained coverage as a result — but Republicans are now considering eliminating the billions in extra federal funding that helped states extend eligibility beyond groups including many children, pregnant women, and disabled people.

Only Georgia and Arkansas have implemented mandates that some Medicaid enrollees work, volunteer, go to school, or enroll in job training. But a study Sommers co-authored showed no evidence work requirements in Arkansas’ program led to more people working, in part because most of those who could work already were.

In Arkansas, more than 18,000 people lost coverage under the state’s requirement before the policy was suspended by a federal judge in 2019 after less than a year. Those who lost their Medicaid health care reported being unaware or confused about how to report work hours. Since 2023, Arkansas has been giving Medicaid health plans financial incentives to help enrollees train for jobs, but so far few have taken advantage.

Some plans, including Arkansas Blue Cross and Blue Shield’s, offer members $25 to $65 to complete a “career readiness” certificate. In 2024, some Arkansas health plans offered enrollees educational videos about topics including taxes and cryptocurrency.

Health plans don’t have an incentive to help someone find a better-paying job, because that could mean losing a customer if they then make too much to qualify for Medicaid, said Karin VanZant, a vice president at Clearlink Partners, a health care consulting company.

Rather than offering incentives for providing job training, some states, such as California and Ohio, require the insurance companies that run Medicaid to help enrollees find work.

In Montana, where some lawmakers are pushing to implement work requirements, a promising optional program nearly collapsed after state lawmakers required it be outsourced to private contractors.

Within the program’s first three years, the state paired 32,000 Medicaid enrollees with existing federally funded job training programs. Most had higher wages a year after starting training, the state found.

But enrollment has plummeted to just 11 people, according to the latest data provided by the state’s labor department.

Sarah Swanson, who heads the department, said several of the nonprofit contractors that ran the program shuttered. “There was no real part in this for us to deliver direct services to the folks that walked through our door,” she said. The state hopes to revive job training by allowing the department to work alongside contractors to reach more people.

The Hunt for Results

State officials say they don’t have much data to track the effectiveness of existing job programs offered by Medicaid plans.

Stephanie O’Grady, a spokesperson for the Ohio Department of Medicaid, said the state does not track outcomes because “the health plans are not employment agencies.”

Officials with CareSource, which operates Medicaid plans in multiple states, say it has about 2,300 Medicaid and ACA marketplace enrollees in its JobConnect program — about 1,400 in Ohio, 500 in Georgia, and 400 in Indiana.

The program connects job seekers with a life coach who counsels them on skills such as “showing up on time, dressing the part for interviews, and selling yourself during the interview,” said Jesse Reed, CareSource’s director of life services in Ohio.

Since 2023, about 800 people have found jobs through the program, according to Josh Boynton, a senior vice president at CareSource. The health plan itself has hired 29 Medicaid enrollees into customer service, pharmacy, and other positions — nearly all full-time with benefits, he said.

In 2022, California started offering nontraditional health benefits through Medicaid — including help finding jobs — for enrollees experiencing homelessness or serious mental illness, or who are otherwise at risk of avoidable emergency room care. As of September, it had served nearly 280,000 enrollees, but the state doesn’t have data on how many became employed.

The University of Pittsburgh Medical Center, which is among the largest private employers in Pennsylvania, running both a sprawling hospital system and a Medicaid plan, has hired over 10,000 of its Medicaid enrollees since 2021 through its training and support services. Among other jobs, they took positions as warehouse workers, customer service representatives, and medical assistants.

The vast majority left low-paying jobs for full-time positions with health benefits, said Dan LaVallee, a senior director of UPMC Health Plan’s Center for Social Impact. “Our Pathways to Work program is a model for the nation,” he said.

Josh Archambault, a senior fellow with the conservative Cicero Institute, said Medicaid should focus on improving the financial health of those enrolled.

While the first Trump administration approved Medicaid work requirements in 13 states, the Biden administration or federal judges blocked all except Georgia’s.

“I don’t think states have been given ample chance to experiment and try to figure out what works,” Archambault said.

KFF Health News senior correspondent Angela Hart contributed to this report.

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Rural hospital leaders are questioning whether they can continue to afford to do business with Medicare Advantage companies, and some say the only way to maintain services and protect patients is to end their contracts with the private insurers. 

Medicare is the main federal health insurance program for people 65 or older. Participants can enroll in traditional, government-run Medicare or in a Medicare Advantage plan run by a private insurance company. 

The private plans offer lower premiums and out-of-pocket costs for some patients. Nearly all offer extra benefits, such as vision, hearing, and dental coverage. Many also offer perks, such as gym memberships, nutrition services, and allowances for over-the-counter health supplies. 

But in recent years, average Medicare Advantage reimbursements to rural hospitals were about 90% of what traditional Medicare paid, according to a new report from the American Hospital Association. And traditional Medicare already pays hospitals much less than private plans, according to a recent study by Rand Corp., a research nonprofit. 

“The vast majority of our rural hospitals are not in a position where they can take further cuts to payment,” said Carrie Cochran-McClain, chief policy officer at the National Rural Health Association. “There are so many that are just really in a precarious financial spot.” 

Nearly 200 rural hospitals have ended inpatient services or shuttered since 2005. 

Jason Merkley, CEO of Brookings Health System in rural South Dakota, worried reimbursement losses would spark staff layoffs and cuts to patient services. So last year, the system dropped all four contracts it had with major Medicare Advantage companies. 

Great Plains Health, which serves parts of rural Nebraska, Kansas, and Colorado, has dropped all contracts with the private insurers. So has Kimball Health Services, which is based in two small towns in Nebraska and Wyoming. 

Rural hospital leaders are also concerned about Medicare Advantage payment delays and a resistance to authorizing patient care. 

Susan Reilly, a spokesperson for the Better Medicare Alliance, said a recent report published by her group, which promotes Medicare Advantage, found that private plans are more affordable than traditional Medicare for rural beneficiaries. That analysis was conducted by an outside firm and based on a government survey.

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Mass firings at the FDA have decimated divisions tasked with releasing public records generated by the agency’s regulatory activities in sectors including tobacco, food, medical devices, and veterinary medicine.

But as the dust settled on the layoff melee, a notable exception emerged among the agency’s staff charged with responding to Freedom of Information Act requests. The cuts spared at least some workers who furnish documents in response to court orders in FOIA lawsuits involving the FDA division that regulates vaccines, which includes litigation brought by an ally of Health and Human Services Secretary Robert F. Kennedy Jr.’s who represents anti-vaccine interests, according to four current or former agency employees.

KFF Health News agreed not to name the workers because they are not authorized to speak to the press and fear retaliation.

Lawyer Aaron Siri filed the FOIA lawsuits, on behalf of the nonprofit Public Health and Medical Professionals for Transparency, in 2021 and 2022 against the FDA to obtain records related to Pfizer’s and Moderna’s covid-19 vaccines. Siri was Kennedy’s lawyer during his 2024 presidential campaign and has represented prominent anti-vaccine activists in numerous lawsuits.

The FDA has released millions of pages of documents about the vaccines after a federal judge in Texas ruled against the agency and set deadlines for furnishing the records. The judge, Mark Pittman of the U.S. District Court for the Northern District of Texas, wrote in January that the nonprofit’s request seeking materials about Pfizer’s covid vaccine is “arguably the most important FOIA request in American history.”

In a Jan. 3 court filing, Department of Justice lawyers said the lawsuit’s plaintiffs had received roughly 4.5 million pages of covid vaccine records and the agency still had at least 1.2 million pages to process in one of the cases. The agency hired about a dozen workers in 2023 and 2024 to help process the records, in addition to one part-time and nine full-time contractors at a cost of $3.5 million. Public Health and Medical Professionals for Transparency has been posting documents on its website.

The FDA faces a June 30 court-ordered deadline to finish releasing documents. Staff members who work on FOIA litigation in the FDA’s vaccine division “are pretty much exclusively working on Siri litigation,” one worker said.

HHS spokesperson Andrew Nixon declined to answer specific questions from KFF Health News about layoffs of FDA FOIA workers. The questions sought responses to accounts of firings provided by current and former employees.

“These claims are untrue and unfounded,” Nixon said.

“FDA FOIA staff, including those working on litigation involving CBER, were impacted as part of HHS’ reorganization,” Nixon said, using the acronym for the Center for Biologics Evaluation and Research, the FDA division that regulates vaccines. He declined to elaborate.

“The simple fact is that FOIA offices throughout the Department were previously siloed and did not communicate with one another, which is inefficient and not effective. Under Secretary Kennedy’s vision for a more efficient HHS, these offices will be streamlined into one place and the work will continue to increase radical transparency for the American people,” Nixon said in an emailed statement.

Three workers bristled at Nixon’s characterization of the cuts. “There’s plenty of ways they could be impacted without being fired,” one of them said.

Siri did not respond to requests for comment for this article.

Details of the fallout of the firings on FDA’s FOIA operations, which have largely ground to a halt, are based on interviews with half a dozen current or former employees.

The move to keep FDA staff working to furnish government records related to its approval of covid vaccines came amid a purge of FOIA workers across federal health agencies, including the FDA, the National Institutes of Health, and the Centers for Disease Control and Prevention. HHS laid off the entire CDC office handling that agency’s FOIA requests and significantly cut staff at the NIH and FDA, according to eight current or former federal workers. Overall, as part of its plans to shrink the department by 20,000 people, HHS officials said 10,000 employees would be laid off, 3,500 of them from the FDA.

Nikhel Sus, deputy chief counsel at Citizens for Responsibility and Ethics in Washington, a legal advocacy group, said, “It’s very concerning that an agency would be prioritizing requests for political reasons.” For years, Kennedy has peddled falsehoods about vaccines — including that “no vaccine” is “safe and effective,” and that “there are other studies out there” showing a connection between vaccines and autism, a link that has repeatedly been debunked.

“That is not what FOIA is meant to do,” Sus said. CREW this month sued the CDC for firing its entire FOIA office.

The layoffs gutted the workforce that process FOIA requests across FDA centers overseeing vaccines, drugs, tobacco, medical devices, and food, current and former employees said. During the 2024 fiscal year — October 2023 through September 2024 — the FDA provided at least some records in response to more than 12,000 requests, according to HHS’ annual FOIA report.

The firings have been inconsistent across offices. Within the FDA division that regulates vaccines, public records staffers who proactively release certain documents, such as information about approved products, were fired, three of the workers said. But in the FDA’s drug division, they were not, two workers said.

At least some who handle FOIA litigation in the FDA offices regulating vaccines and drugs kept their jobs, according to four workers.

By contrast, FDA workers who handled FOIA litigation in other FDA offices, including those that focus on tobacco and medical devices, were fired as part of the mass layoffs, according to one former and two current employees. The former employee said they had been working on litigation in which a court order required documents to be produced monthly, among other FOIA responsibilities.

“Because we were cut, those things stopped abruptly,” the former employee said. “There was no plan in place to take care of the work.”

FOIA is a transparency law signed in 1966 that guarantees public access to the inner workings of federal agencies by requiring officials to disclose government documents. It has been used by researchers, companies, law firms, advocates, and journalists to review public records and the work of agencies, hold officials accountable, and uncover harm, corruption, and political meddling in policymaking.

Health care experts and transparency advocates have said that HHS’ mass firing of FOIA staff across agencies will hamper public access to government records that document the handling of illnesses, faulty products, and safety lapses at health facilities, putting the health and safety of Americans at risk.

At the height of the covid pandemic, in late 2020, the FDA granted emergency use authorization of Pfizer’s and Moderna’s covid vaccines, before granting full approvals in 2021 and 2022, respectively. Covid vaccines are credited with saving millions of lives in the U.S., but Kennedy has rejected the science behind them and questioned their safety.

While speaking to Louisiana lawmakers in 2021, he falsely claimed that the covid vaccine was “the deadliest vaccine ever made.” During one of his Senate confirmation hearings in January, he said, “I don’t know,” when Sen. Bernie Sanders (I-Vt.) pressed him about whether covid vaccines were good. “We don’t have the science to make that determination,” Kennedy said.

In a June 2021 post on the social platform X, Kennedy publicized a petition to the FDA to remove covid vaccines’ emergency use authorizations that was submitted by Children’s Health Defense, an anti-vaccine nonprofit he founded and chaired until December.

Pittman, the federal judge in Texas considering the two Public Health and Medical Professionals for Transparency cases against the FDA, was appointed in 2019 by President Donald Trump. Pittman ordered the FDA to release records related to approval of Pfizer’s and Moderna’s covid-19 vaccines on an accelerated schedule.

Siri for years has fought vaccination requirements, including challenging a Massachusetts flu shot mandate and a covid vaccine mandate in public schools in San Diego. His clients have included the Informed Consent Action Network, a prominent anti-vaccine group founded in 2016 by activist Del Bigtree. Bigtree worked as communications director for Kennedy’s presidential campaign and is a major player in Kennedy’s “Make America Healthy Again” movement.

 Like Kennedy, Siri has spread misinformation about vaccines and questioned their safety. During a 2023 legislative hearing in South Carolina, Siri said, “There are actually a number of studies that do show correlation between autism and vaccines,” even though claims of such a link have been repeatedly debunked. During one of his Senate confirmation hearings, Kennedy refused to say vaccines do not cause autism.

“We must be able to raise valid questions about vaccines without fear that anyone who deviates from the accepted orthodoxy will be smeared as a radical. There are many issues that divide Americans, but drug and vaccine safety should unite us,” Siri wrote in a Wall Street Journal opinion piece following a story in The New York Times that he had petitioned the FDA on behalf of ICAN to revoke approval of the polio vaccine.

And in early January, Siri responded to a CDC social media post by saying: “CDC’s message for the new year is get a C19 vaccine. Their worship of vaccines as the path to safety and health is a cult.”

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

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Public access to government records that document the handling of illnesses, faulty products, and safety lapses at health facilities will slow after mass firings at the federal Department of Health and Human Services swept out staff members responsible for releasing records, according to transparency advocates and health experts.

HHS Secretary Robert F. Kennedy Jr.’s layoffs across health agencies in recent days eliminated workers who handled Freedom of Information Act requests at the Centers for Disease Control and Prevention and cut FOIA staff at the FDA and the National Institutes of Health, said six current and former federal workers KFF Health News agreed not to name because they fear retaliation and are not authorized to speak to the press.

FOIA is a transparency law that guarantees public access to the inner workings of federal agencies by requiring officials to release government documents. The 1966 law is a crucial tool for law firms, advocates, businesses, journalists, and the general public. It has been used to hold officials accountable and uncover harm, corruption, and political meddling in policymaking.

At HHS, FOIA requests are used to obtain a litany of records, including detailed CDC information about large outbreaks of food and waterborne illnesses, and FDA inspection reports of facilities that make food, drugs, medical devices, and dental products.

Peter Lurie, president of the Center for Science in the Public Interest, said the FOIA cuts would have “an enormous effect on patient safety” and are “antithetical” to Kennedy’s promise to bring “radical transparency” to federal health agencies.

“It is simply not possible to honorably make that claim while decimating the staff,” Lurie said. “Can we rely particularly on this government to be forthcoming about the number of cases in an outbreak? You need FOIA to be able to take the lid off of that.”

HHS officials declined to answer questions about plans for the agencies to fulfill FOIA requests. In an emailed statement, HHS spokesperson Vianca Rodriguez Feliciano said, “The FOIA offices throughout the Department were previously siloed and did not communicate with one another. Under Secretary Kennedy’s vision for a more efficient HHS, these offices will be streamlined, and the work will continue.”

Gunita Singh, staff attorney for the Reporters Committee for Freedom of the Press, said the FOIA layoffs were almost certain to further slow the release of public records, which often took months or years before the cuts.

“What we need to be doing is the opposite of what’s happening now: hiring more staff,” she said.

Many records are disclosed only in response to FOIA requests. For example, during the covid-19 pandemic, FOIA requests forced the FDA to release internal documents showing little evidence to support using hydroxychloroquine to treat covid, even though President Donald Trump heavily promoted the drug.

Scientific researchers have used the law to obtain clinical trial data to assess whether drugs are safe and effective, or to get more details about adverse events associated with drugs and medical devices. Lurie said obtaining more information about adverse events is particularly important in serving as a bulwark against cherry-picking data or manipulating what’s available online to spread disinformation about the safety of vaccines and other products.

All these efforts will be slowed by the purge of FOIA offices, said Michael Morisy, CEO of MuckRock, a nonprofit group that helps journalists and others file public records requests. Scientists will have less to study. Attorneys and advocates will struggle to build cases and fight for causes. Simply, Americans will know less about their government and the industries it regulates and be less able to hold them both to account.

“I think one thing we’ve learned is that if there’s less watchdogging over an issue, that issue gets worse,” Morisy said. “I really do think that we are going to see companies become more lax with food safety, companies become more lax with consumer safety.”

Thousands of pending FOIA requests are likely to be affected.

During fiscal 2024 — from October 2023 through September 2024 — the CDC, FDA, and NIH received more than 15,000 FOIA requests and provided at least some records in response to more than 10,000, according to HHS’ most recent annual FOIA report.

Those requests were submitted by university researchers, state governments, laboratories, pharmaceutical companies, animal rights groups, law firms, and news organizations, including KFF Health News. Records sought by law firms appear related to investigations of illnesses, outbreaks, drugs, medical devices, and products used by countless Americans.

Morisy and Singh said filling requests is more complicated than many realize, often requiring an in-depth understanding of complex agencies. That’s why it’s important to house FOIA staff within each agency rather than consolidate them.

“We are sacking the entire staff and sacking all of that knowledge,” Morisy said. “And I just don’t see how these things continue to function.”

David Rousseau, the publisher of KFF Health News, serves on the board of the Center for Science in the Public Interest.

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

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Since returning to the White House, President Donald Trump has made combating fraud a centerpiece of his administration. Trump has said he will target fraud in Medicare, Medicaid, and Social Security programs, and his Republican allies in Congress have made combating fraud a key argument in their plans to slash Medicaid. Trump also has empowered the Elon Musk-led Department of Government Efficiency to make massive cuts to government spending, often claiming to snuff out fraud and waste in the process. 

Trump’s present-day crackdown starkly contrasts with his history of showing leniency to convicted fraudsters. In his first and second terms, Trump has granted pardons or commutations to at least 68 people convicted of fraud crimes or interfering with fraud investigations, according to a KFF Health News review of court and clemency records, Department of Justice press releases, and news reports. At least 13 of those fraudsters were convicted in cases involving more than $1.6 billion in fraudulent claims filed with Medicare and Medicaid, according to the DOJ. 

In interviews with KFF Health News, two experts on health care fraud said that Trump’s claimed focus appears to be a pretext for slashing spending that was legally appropriated by Congress. 

“What’s been the focal point to date of the administration is not what anybody has ever referred to as health care fraud,” said Jacob Elberg, a former assistant U.S. attorney and law professor at Seton Hall University. “There is a real blurring — a seemingly intentional blurring — between what is actually fraud and what is just spending that they are not in favor of.” 

Jerry Martin, who served as a U.S. attorney for the Middle District of Tennessee under President Barack Obama and now represents health care fraud whistleblowers, said Trump’s stepped-up interest may embolden informants to come forward. 

“I’ve had clients repeat back to me ‘President Trump says fraud is a priority,’” Martin said. “People are listening to it. But I don’t know that what he’s saying translates into what they believe.” 

Even so, Trump’s past leniency to fraudsters might discourage the Justice Department from pursuing the whistleblowers’ claims, Martin said. 

“There are a lot of rank-and-file people who are operating at the lowest point in their professional careers, where they’ve seen a lot of their work essentially be water under the bridge,” Martin said. “That’s got to be really demoralizing.” 

The White House did not respond to requests for comment. 

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Five years ago, the CEO of one of the largest pain clinic companies in the Southeast was sentenced to more than three years in prison after being convicted in a $4 million illegal kickback scheme.

But after just four months behind bars, John Estin Davis walked free. President Donald Trump commuted Davis’ sentence in the last days of his first term. In a statement explaining the decision, the White House said that “no one suffered financially” from Davis’ crime.

In court, however, the Trump administration was saying something very different. As the president let him go, the Department of Justice alleged in a civil lawsuit that Davis and his company defrauded taxpayers out of tens of millions of dollars with excessive urine drug testing. The DOJ alleged that Comprehensive Pain Specialists made such a “staggering” sum from cups of pee that employees had given the testing a profit-minded nickname: “liquid gold.”

Davis and the company denied all allegations in court filings and settled the DOJ’s fraud lawsuit without any determination of liability. Davis declined to comment for this article.

Since returning to the White House, Trump has said he will target fraud in Medicare, Medicaid, and Social Security, and his Republican allies in Congress have made combating fraud a key argument in their plans to slash spending on Medicaid, which provides health care for millions of low-income and disabled Americans. During an address to Congress last month, Trump said his administration had found “hundreds of billions of dollars of fraud” without citing any specific examples of fraud.

“Taken back a lot of that money,” Trump said. “We got it just in time.”

But Trump’s history of showing leniency to convicted fraudsters contrasts with his present-day crackdown. In his first and second terms, Trump has granted pardons or commutations to at least 68 people convicted of fraud crimes or of interfering with fraud investigations, according to a KFF Health News review of court and clemency records, DOJ press releases, and news reports. At least 13 of those fraudsters were convicted in cases involving more than $1.6 billion of fraudulent claims filed with Medicare and Medicaid, according to the Department of Justice.

And as one of the first actions of his second term, Trump fired 17 independent inspectors general responsible for rooting out fraud and waste in government.

“It sends a really bad message and really hurts DOJ efforts at creating deterrence,” said Jacob Elberg, a former assistant U.S. attorney and law professor at Seton Hall University in New Jersey. “In order to reduce health care fraud, you need people both to be afraid of getting in trouble, but also for people to believe in the legitimacy of the system.”

Elberg said considerable fraud in Medicare and Medicaid exists largely because the programs’ “pay-and-chase models” prioritize paying for patient care first and tracking down stolen dollars second. To prevent more fraud, the programs would likely need to be redesigned in ways that would be slower and more cumbersome for all patients, Elberg said.

Regardless, Elberg said the president’s claimed focus on fraud appears to be a pretext for slashing spending that has been legally appropriated by Congress. Trump has empowered the Elon Musk-led Department of Government Efficiency, which he established and named by executive order, to make deep cuts in federal budgets, halting some medical research and aid programs in addition to cutting spending on climate change, transgender health, and diversity, equity, and inclusion programs.

“What’s been the focal point to date of the administration is not what anybody has ever referred to as health care fraud,” Elberg said. “There is a real blurring — a seemingly intentional blurring — between what is actually fraud and what is just spending that they are not in favor of.”

Jerry Martin, who served as a U.S. attorney for the Middle District of Tennessee under President Barack Obama and now represents health care fraud whistleblowers, also said Trump’s focus on fraud appeared to be “just a platform to attack things that they don’t agree with” rather than “a genuine desire to root out and combat fraud.”

Even so, Martin said some of his whistleblower clients have been emboldened.

“I’ve had clients repeat back to me ‘President Trump says fraud is a priority,’” Martin said. “People are listening to it. But I don’t know that what he’s saying translates into what they believe.”

The White House did not respond to requests for comment for this article.

A Billion-Dollar Fraud Case and Needless Eye Injections

Presidents enjoy the unique authority to erase federal convictions and prison sentences with pardons and commutations. In theory, the power is intended to be a final bulwark against injustice or overly harsh punishment. But many presidents have been accused of using the pardon power to reward powerful allies and close associates as they leave the White House.

Trump issued about 190 pardons and commutations in the final two months of his first term, including for some health care fraudsters convicted of schemes with astonishing costs.

For example, Trump granted a commutation to Philip Esformes, a Florida health care executive convicted in 2019 of a $1.3 billion Medicare and Medicaid fraud scheme. After he was sentenced, DOJ announced in a press release that “the man behind one of the biggest health care frauds in history will be spending 20 years in prison.” Trump freed him 14 months later.

Trump also granted a commutation to Salomon Melgen, a Florida eye doctor who was serving a 17-year prison sentence for defrauding Medicare of $42 million. Melgen falsely diagnosed patients with eye diseases, then gave them unnecessary care, including laser treatments and painful eye injections, according to DOJ and court documents.

“Salomon Melgen callously took advantage of patients who came to him fearing blindness,” said a DOJ news release after Melgen was sentenced in 2018. “They received medically unreasonable and unnecessary tests and procedures that victimized his patients and the American taxpayer.”

DOJ: $70 Million Spent on ‘Excessive’ Urine Testing

Despite the flurry of pardons and commutations at the end of Trump’s first term, the leniency he showed Davis was unique. Davis was the only convicted health care fraudster to receive clemency while the Trump administration was simultaneously accusing him of more fraud.

As CEO of Comprehensive Pain Specialists from 2011 to 2017, Davis oversaw a rapid expansion to more than 60 locations across 12 states, according to federal court documents.

He was indicted in 2018 for using his CEO position to refer Medicare patients in need of medical equipment to a conspirator in return for kickbacks paid through a shell company, according to court documents. He was convicted at trial in April 2019 of defrauding Medicare.

Three months later, the DOJ filed a fraud lawsuit against Davis and CPS that piggybacked on the claims of seven whistleblowers. The lawsuit alleged that CPS collected more than $70 million from federal insurance programs for urine drug testing, most of which was “excessive,” and that an audit of a sampling of the tests had found at least 93% “lacked medical necessity.”

Typically, government insurance programs pay for urine testing so pain clinics can verify that patients are taking their prescriptions properly and not abusing any other drugs, which could contribute to an overdose. Patients could be tested as little as once a year or as often as monthly depending on their level of risk, according to the DOJ lawsuit.

But Comprehensive Pain Specialists performed “myriad urine drug testing on virtually every CPS patient on virtually every visit” then conducted “at least 16 different types of tests” on each sample, and sometimes as many as 51, according to the lawsuit.

Trump commuted Davis’ sentence for his criminal conviction in January 2021 as the DOJ was finalizing a settlement in the civil lawsuit. The commutation was supported by country music star Luke Bryan, according to a White House statement.

Months later, with President Joe Biden in office, CPS and its owners agreed to repay $4.1 million — less than 10% of the damages sought in the suit — and the case was closed.

In the settlement, Davis agreed not to take any job where he would ever again bill Medicare or other federal health care programs. He was not required to personally repay anything.

Martin, who represented one of the whistleblowers who first raised allegations against Davis and CPS, said the leniency that Trump showed to him and other health care fraudsters may discourage DOJ employees from pursuing similar investigations during his second term.

“There are a lot of rank-and-file people who are operating at the lowest point in their professional careers, where they’ve seen a lot of their work essentially be water under the bridge,” Martin said. “That’s got to be really demoralizing.”

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HENRICO, Va. — Sheldon Ekirch spends a lot of time on hold with her health insurance company.

Sometimes, as the minutes tick by and her frustration mounts, Ekirch, 30, opens a meditation app on her phone. It was recommended by her psychologist to help with the depression associated with a stressful and painful medical disorder.

In 2023, Ekirch was diagnosed with small fiber neuropathy, a condition that makes her limbs and muscles feel as if they’re on fire. Now she takes more than a dozen prescriptions to manage chronic pain and other symptoms, including insomnia.

“I don’t feel like I am the person I was a year and a half ago,” said Ekirch, who was on the cusp of launching her law career, before getting sick. “Like, my body isn’t my own.”

Ekirch said specialists have suggested that a series of infusions made from blood plasma called intravenous immunoglobulin — IVIG, for short — could ease, or potentially eradicate, her near-constant pain. But Ekirch’s insurance company has repeatedly denied coverage for the treatment, according to documents provided by the patient.

Patients with Ekirch’s condition don’t always respond to IVIG, but she said she deserves to try it, even though it could cost more than $100,000.

“I’m paying a lot of money for health insurance,” said Ekirch, who pays more than $600 a month in premiums. “I don’t understand why they won’t help me, why my life means so little to them.”

For patient advocates and health economists, cases like Ekirch’s illustrate why prior authorization has become such a chronic pain point for patients and doctors. For 50 years, insurers have employed prior authorization, they say, to reduce wasteful health care spending, prevent unnecessary treatment, and guard against potential harm.

The practice differs by insurance company and plan, but the rules often require patients or their doctors to request permission from the patient’s health insurance company before proceeding with a drug, treatment, or medical procedure.

The insurance industry provides little information about how often prior authorization is used. Transparency requirements established by the federal government to shed light on the use of prior authorization by private insurers haven’t been broadly enforced, said Justin Lo, a senior researcher for the Program on Patient and Consumer Protections at KFF, a health information nonprofit that includes KFF Health News.

Yet it’s widely acknowledged that prior authorization tends to disproportionately impact some of the sickest people who need the most expensive care. And despite bipartisan support to reform the system, as well as recent attempts by health insurance companies to ease the burden for patients and doctors, some tactics have met skepticism.

Some insurers’ efforts to improve prior authorization practices aren’t as helpful as they would seem, said Judson Ivy, CEO of Ensemble Health Partners, a revenue cycle management company.

“When you really dive deep,” he said, these improvements don’t seem to touch the services and procedures, such as CT scans, that get caught up in prior authorization so frequently. “When we started looking into it,” he said, “it was almost a PR stunt.”

The ‘Tipping Point’

When Arman Shahriar’s father was diagnosed with follicular lymphoma in 2023, his father’s oncologist ordered a whole-body PET scan to determine the cancer’s stage. The scan was denied by a company called EviCore by Evernorth, a Cigna subsidiary that makes prior authorization decisions.

Shahriar, an internal medicine resident, said he spent hours on the phone with his father’s insurer, arguing that the latest medical guidelines supported the scan. The imaging request was eventually approved. But his father’s scan was delayed several weeks — and multiple appointments were scheduled, then canceled during the time-consuming process — while the family feared the cancer would continue to spread.

EviCore by Evernorth spokesperson Madeline Ziomek wrote in an emailed statement that incomplete clinical information provided by physicians is a leading cause of such denials. The company is “actively developing new ways to make the submission process simpler and faster for physicians,” Ziomek said.

In the meantime, Shahriar, who often struggles to navigate prior authorization for his patients, accused the confusing system of “artificially creating problems in people’s lives” at the wrong time.

“If families with physicians are struggling through this, how do other people navigate it? And the short answer is, they can’t,” said Shahriar, who wrote about his father’s case in an essay published last year by JAMA Oncology. “We’re kind of reaching a tipping point where we’re realizing, collectively, something needs to be done.”

The fatal shooting of UnitedHealthcare CEO Brian Thompson on a New York City sidewalk in December prompted an outpouring of grief among those who knew him, but it also became a platform for public outrage about the methods insurance companies use to deny treatment.

An Emerson College poll conducted in mid-December found 41% of 18- to 29-year-olds thought the actions of Thompson’s killer were at least somewhat acceptable. In a NORC survey from the University of Chicago conducted in December, two-thirds of respondents indicated that insurance company profits, and their denials for health care coverage, contributed “a great deal/moderate amount” to the killing. Instagram accounts established in support of Luigi Mangione, the 26-year-old Maryland suspect accused of murder and terrorism, have attracted thousands of followers.

“The past several weeks have further challenged us to even more intensely listen to the public narrative about our industry,” Cigna Group CEO David Cordani said during an earnings call on Jan. 30. Cigna is focused on “making prior authorizations faster and simpler,” he added.

The first Trump administration and the Biden administration put forth policies designed to improve prior authorization for some patients by mandating that insurers set up electronic systems and shortening the time companies may take to issue decisions, among other fixes. Hundreds of House Democrats and Republicans signed on to co-sponsor a bill last year that would establish new prior authorization rules for Medicare Advantage plans. In January, Republican congressman Jefferson Van Drew of New Jersey introduced a federal bill to abolish the use of prior authorization altogether.

Meanwhile, many states have passed legislation to regulate the use of prior authorization. Some laws require insurers to publish data about prior authorization denials with the intention of making a confusing system more transparent. Reform bills are under consideration by state legislatures in Hawaii, Montana, and elsewhere. A bill in Virginia approved by the governor March 18 takes effect July 1. Other states, including Texas, have established “gold card” programs that ease prior authorization requirements for some physicians by allowing doctors with a track record of approvals to bypass the rules.

No one from AHIP, an insurance industry lobbying group formerly known as America’s Health Insurance Plans, was available to be interviewed on the record about proposed prior authorization legislation for this article.

But changes wouldn’t guarantee that the most vulnerable patients would be spared from future insurance denials or the complex appeals process set up by insurers. Some doctors and advocates for patients are skeptical that prior authorization can be fixed as long as insurers are accountable to shareholders.

Kindyl Boyer, director of advocacy for the nonprofit Infusion Access Foundation, remains hopeful the system can be improved but likened some efforts to playing “Whac-A-Mole.” Ultimately, insurance companies are “going to find a different way to make more money,” she said.

‘Unified Anger’

In the weeks following Thompson’s killing, UnitedHealthcare was trying to refute an onslaught of what it called “highly inaccurate and grossly misleading information” about its practices when another incident landed the company back in the spotlight.

On Jan. 7, Elisabeth Potter, a breast reconstruction surgeon in Austin, Texas, posted a video on social media criticizing the company for questioning whether one of her patients who had been diagnosed with breast cancer and was undergoing surgery that day needed to be admitted as an inpatient.

The video amassed millions of views.

In the days following her post, UnitedHealthcare hired a high-profile law firm to demand a correction and public apology from Potter. In an interview with KFF Health News, Potter would not discuss details about the dispute, but she stood by what she said in her original video.

“I told the truth,” Potter said.

The facts of the incident remain in dispute. But the level of attention it received online illustrates how frustrated and vocal many people have become about insurance company tactics since Thompson’s killing, said Matthew Zachary, a former cancer patient and the host of “Out of Patients,” a podcast that aims to amplify the experiences of patients.

For years, doctors and patients have taken to social media to shame health insurers into approving treatment. But in recent months, Zachary said, “horror stories” about prior authorization shared widely online have created “unified anger.”

“Most people thought they were alone in the victimization,” Zachary said. “Now they know they’re not.”

Data published in January by KFF found that prior authorization is particularly burdensome for patients covered by Medicare Advantage plans. In 2023, virtually all Medicare Advantage enrollees were covered by plans that required prior authorization, while people enrolled in traditional Medicare were much less likely to encounter it, said Jeannie Fuglesten Biniek, an associate director at KFF’s Program on Medicare Policy. Furthermore, she said, Medicare Advantage enrollees were more likely to face prior authorization for higher-cost services, including inpatient hospital stays, skilled nursing facility stays, and chemotherapy.

But Neil Parikh, national chief medical officer for medical management at UnitedHealthcare, explained prior authorization rules apply to fewer than 2% of the claims the company pays. He added that “99% of the time” UnitedHealthcare members don’t need prior authorization or requests are approved “very, very quickly.”

Recently, he said, a team at UnitedHealthcare was reviewing a prior authorization request for an orthopedic procedure when they discovered the surgeon planned to operate on the wrong side of the patient’s body. UnitedHealthcare caught the mistake in time, he recounted.

“This is a real-life example of why prior authorization can really help,” Parikh said.

Even so, he said, UnitedHealthcare aims to make the process less burdensome by removing prior authorization requirements for some services, rendering instant decisions for certain requests, and establishing a national gold card program, among other refinements. Cigna also announced changes designed to improve prior authorization in the months since Thompson’s killing.

“Brian was an incredible friend and colleague to many, many of us, and we are deeply saddened by his passing,” Parikh said. “It’s truly a sad occasion.”

The Final Denial

During the summer of 2023, Ekirch was working full time and preparing to take the bar exam when she noticed numbness and tingling in her arms and legs. Eventually, she started experiencing a burning sensation throughout her body.

That fall, a Richmond-area neurologist said her symptoms were consistent with small fiber neuropathy, and, in early 2024, a rheumatologist recommended IVIG to ease her pain. Since then, other specialists, including neurologists at the University of Virginia and Virginia Commonwealth University, have said she may benefit from the same treatment.

There’s no guarantee it will work. A randomized controlled trial published in 2021 found pain levels in patients who received IVIG weren’t significantly different from the placebo group, while an older study found patients responded “remarkably well.”

“It’s hard because I look at my peers from law school and high school — they’re having families, excelling in their career, living their life. And most days I am just struggling, just to get out of bed,” said Ekirch, frustrated that Anthem continues to deny her claim.

In a prepared statement, Kersha Cartwright, a spokesperson for Anthem’s parent company, Elevance Health, said Ekirch’s request for IVIG treatment was denied “because it did not meet the established medical criteria for effectiveness in treating small fiber neuropathy.”

On Feb. 17, her treatment was denied by Anthem for the final time. Ekirch said her patient advocate, a nurse who works for Anthem, suggested she reach out to the drug manufacturer about patient charity programs.

“This is absolutely crazy,” Ekirch said. “This is someone from Anthem telling me to plead with a pharmacy company to give me this drug when Anthem should be covering it.”

Her only hope now lies with the Virginia State Corporation Commission Bureau of Insurance, a state agency that resolves prior authorization disputes between patients and health insurance companies. She found out through a Facebook group for patients with small fiber neuropathy that the Bureau of Insurance has overturned an IVIG denial before. In late March, Ekirch was anxiously waiting to hear the agency’s decision about her case.

“I don’t want to get my hopes up too much, though,” she said. “I feel like this entire process, I’ve been let down by it.”

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HELENA, Mont. — Montana’s small, independent pharmacies say they’re getting increasingly squeezed on reimbursements by pharmacy benefit managers — and are pushing an ambitious bill to rein in what they say are unfair practices by the powerful industry negotiators known as PBMs.

“Who in their right mind would subject themselves to this sort of treatment in a business relationship?” said Mike Matovich, a part owner of eight small-town pharmacies in Montana. “It’s such a monopoly. We can be the best pharmacy in the world, and they can still put us out of business.”

The bill, which sailed through the Montana House 98-1 in early March and is now before the state Senate, would set a price floor that PBMs must pay pharmacies for each prescription. Currently, there is no mandated minimum rate in contracts with pharmacies, and independent drugstores said the rates are often below what they paid for the drugs.

The measure includes a half-dozen restrictions on other PBM practices the smaller pharmacies call anticompetitive.

Pharmacy benefit managers, employed by health insurers, are powerful intermediaries in the drug-pricing chain. They determine which drugs are covered by health plans, arrange rebates from drugmakers, and dictate payments that pharmacies receive when selling covered drugs.

The six largest PBMs manage more than 90% of the nation’s drug sales. Most are owned by or affiliated with health insurance giants like UnitedHealth Group, Cigna, Humana, and Aetna.

About 90 Montanan-owned pharmacies are not affiliated with national companies or PBMs, and 10 have closed in the past year, according to Josh Morris, who owns several small-town pharmacies in the state. Morris said his pharmacies lost $30,000 on underpaid drug claims last year and that they lose money on 90% of the brand-name drugs they dispense.

Representatives of independent Montana pharmacies say that without the changes provided by the legislation, more of their ranks will close, because they can’t make ends meet on drug reimbursement prices imposed by what they say are “take-it-or-leave-it” contracts from PBMs.

“We’re filling more prescriptions than ever before, but my employees haven’t had a raise in three years,” Morris said. “Our reimbursements are down 60% since 2019.”

PBMs are mounting a concerted effort in the Montana Senate to kill House Bill 740, arguing it could throw a huge wrench into drug pricing in Montana that would increase consumer costs.

“Not only is it going to cost people, it’s going to change fundamentally how prescription drugs are paid for in the state,” said Tonia Sorrell-Neal of the Pharmaceutical Care Management Association, a trade group representing PBMs. “It takes away the options for employers who are paying for these health plans” to keep drug prices low.

The bill restricts mail-order options for drugs, limits when PBMs can audit claims, and imposes excessive reimbursements, she said.

This battle between PBMs and independent pharmacies isn’t playing out just in Montana — it has roiled statehouses across the country, drawn the attention of Congress, and could end up before the U.S. Supreme Court.

Last summer, the federal House Oversight and Accountability Committee and the Federal Trade Commission issued highly critical reports saying PBMs use pricing tactics that keep drug costs high, help pad PBM profits, and harm independent pharmacies.

New federal regulations to crack down on PBMs had been included in a 2024 post-election budget bill before Congress but were stripped out at the last minute after a lobbying push by pharmacy benefit managers.

At least 20 states have passed laws regulating PBM payments to pharmacies and several other states, including California, are considering legislation this year.

Oklahoma passed one of the most expansive laws in 2019. But PBMs sued and won a federal court ruling that said the law does not apply to self-funded health plans, thus removing about two-thirds of the insured population from the law’s jurisdiction.

Oklahoma’s insurance commissioner last year asked the U.S. Supreme Court to overrule the decision, but the court hasn’t decided whether to take the case. Attorneys general from 31 states and the District of Columbia have asked the high court to rule in Oklahoma’s favor; Montana’s AG is not one of them.

In Montana, HB 740’s regulations would apply to PBMs managing self-funded plans, said the state insurance commissioner’s office, which so far supports the bill.

The key element of HB 740 is setting requirements on what PBMs must reimburse pharmacies for each prescription they fill, when that prescription is covered by a health plan using the PBM.

It says the reimbursement can be no less than 106% of the National Average Drug Acquisition Cost, or NADAC — which is determined by a survey of wholesale prices paid by pharmacies — plus a “dispensing fee” for each prescription.

The dispensing fee would be the same as what Montana’s Medicaid program pays pharmacies — $12 to $18 per prescription, depending on the size of the pharmacy. The state Medicaid program also pays the 106% minimum reimbursement.

Montana pharmacies say the dispensing fee covers their basic costs and enables them to make a profit on most sales. Under contracts with most PBMs, the pharmacies say they get no dispensing fee.

The bill also requires other changes in PBM business practices that pharmacies say benefit PBMs and make it harder for independent pharmacies to stay in business.

For example, HB 740 says PBMs cannot offer better prices to pharmacies that they own, cannot charge after-the-fact fees that lower reimbursement rates, cannot slow-walk approval of contracts, and cannot lower payments for drugs sold past a “sell-by” date imposed by the PBMs.

PBM and health plan lobbyists have attacked the bill for its breadth and detail, saying it’s so extensive that nobody truly knows how it may affect prescription-drug markets and prices in Montana.

“This bill has too much,” Bruce Spencer, an attorney for the Mountain Health Co-Op, told the House Business and Labor Committee at the bill’s first hearing in February. “It has unintended consequences that are severe in the financial world.”

Laura Shirtliff, a spokesperson for the state auditor’s office, said the bill’s provisions should be narrowed, to target assistance for smaller pharmacies.

PBM lobbyists are telling lawmakers to kill HB 740 and instead pass a bill to study the prescription-drug market in Montana, with an eye toward possible solutions to help rural pharmacies.

“I would say there are a lot of elements and factors that are impacting rural pharmacies’ business,” said Sorrell-Neal of the PBM trade group.

Supporters, however, said HB 740 needs to closely define exactly what’s happening in the field, between PBMs and pharmacies, so those practices can be regulated.

As for waiting two years for a study? Pharmacy owners say that’s too late, and that the time to fix the problem is now.

“The amount of damage that would be done in two years will never be able to be recovered from, in these communities,” Matovich said. “Ten years ago, we maybe lost money on five prescriptions a month. Now, it’s thousands of prescriptions a month.”

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Mari Villar was slammed by a car that jumped the curb, breaking her legs and collapsing a lung. Amy Paulo was in pain from a femur surgery that wasn’t healing properly. Katie Kriegshauser suffered organ failure during pregnancy, weakening her so much that she couldn’t lift her baby daughter.

All went to physical therapy, but their health insurers stopped paying before any could walk without assistance. Paulo spent nearly $1,500 out of her own pocket for more sessions.

Millions of Americans rely on physical and occupational therapists to regain strength and motor skills after operations, diseases, and injuries. But recoveries are routinely stymied by a widespread constraint in health insurance policies: rigid caps on therapy sessions.

Insurers frequently limit such sessions to as few as 20 a year, a KFF Health News examination finds, even for people with severe damage such as spinal cord injuries and strokes, who may need months of treatment, multiple times a week. Patients can face a bind: Without therapy, they can’t return to work, but without working, they can’t afford the therapy.

Paulo said she pressed her insurer for more sessions, to no avail. “I said, ‘I’m in pain. I need the services. Is there anything I can do?’” she recalled. “They said, no, they can’t override the hard limit for the plan.”

A typical physical therapy session for a privately insured patient to improve daily functioning costs $192 on average, according to the Health Care Cost Institute. Most run from a half hour to an hour.

Insurers say annual visit limits help keep down costs, and therefore premiums, and are intended to prevent therapists from continuing treatment when patients are no longer improving. They say most injuries can be addressed in a dozen or fewer sessions and that people and employers who bought insurance could have purchased policies with better therapy benefits if it was a priority.

Atul Patel, a physiatrist in Overland Park, Kansas, and the treasurer of the American Academy of Physical Medicine and Rehabilitation, said insurers’ desire to prevent gratuitous therapy is understandable but has “gone too far.”

“Most patients get way less therapy than they would actually benefit from,” he said.

Hard caps on rehab endure in part because of an omission in the Affordable Care Act. While that law required insurers to cover rehab and barred them from setting spending restrictions on a patient’s medical care, it did not prohibit establishing a maximum number of therapy sessions a year.

More than 29,000 ACA health plans — nearly 4 in 5 — limit the annual number of physical therapy sessions, according to a KFF Health News analysis of plans sold last year to individuals and small businesses. Caps generally ranged from 20 to 60 visits; the most common was 20 a year.

Health plans provided by employers often have limits of 20 or 30 sessions as well, said Cori Uccello, senior health fellow at the American Academy of Actuaries.

“It’s the gross reality in America right now,” said Sam Porritt, chairman of the Falling Forward Foundation, a Kansas-based philanthropy that has paid for therapy for about 200 patients who exhausted their insurance over the past decade. “No one knows about this except people in the industry. You find out about it when tragedy hits.”

Even in plans with no caps, patients are not guaranteed unlimited treatment. Therapists say insurers repeatedly require prior authorization, demanding a new request every two or three visits. Insurers frequently deny additional sessions if they believe there hasn’t been improvement.

“We’re seeing a lot of arbitrary denials just to see if you’ll appeal,” said Gwen Simons, a lawyer in Scarborough, Maine, who represents therapy practices. “That’s the point where the therapist throws up their hands.”

‘Couldn’t Pick Her Up’

Katie Kriegshauser, a 37-year-old psychologist from Kansas City, Missouri, developed pregnancy complications that shut down her liver, pancreas, and kidneys in November 2023. After giving birth to her daughter, she spent more than three months in a hospital, undergoing multiple surgeries and losing more than 40 pounds so quickly that doctors suspected her nerves became damaged from compression. Her neurologist told her he doubted she would ever walk again.

Kriegshauser’s UnitedHealthcare insurance plan allowed 30 visits at Ability KC, a rehabilitation clinic in Kansas City. She burned through them in six weeks in 2024 because she needed both physical therapy, to regain her mobility, and occupational therapy, for daily tasks such as getting dressed.

“At that point I was starting to use the walker from being completely in the wheelchair,” Kriegshauser recalled. She said she wasn’t strong enough to change her daughter’s diaper. “I couldn’t pick her up out of her crib or put her down to sleep,” she said.

The Falling Forward Foundation paid for additional sessions that enabled her to walk independently and hold her daughter in her arms. “A huge amount of progress happened in that period after my insurance ran out,” she said.

In an unsigned statement, UnitedHealthcare said it covered the services that were included in Kriegshauser’s health plan. The company declined to permit an official to discuss its policies on the record because of security concerns.

A Shattered Teenager

Patients who need therapy near the start of a health plan’s year are more likely to run out of visits. Mari Villar was 15 and had been walking with high school friends to get a bite to eat in May 2023 when a car leaped over a curb and smashed into her before the driver sped away.

The accident broke both her legs, lacerated her liver, damaged her colon, severed an artery in her right leg, and collapsed her lung. She has undergone 11 operations, including emergency exploratory surgery to stop internal bleeding, four angioplasties, and the installation of screws and plates to hold her leg bones together.

Villar spent nearly a month in Shirley Ryan AbilityLab’s hospital in Chicago. She was discharged after her mother’s insurer, Blue Cross and Blue Shield of Illinois, denied her physician’s request for five more days, making her more reliant on outpatient therapy, according to records shared by her mother, Megan Bracamontes.

Villar began going to one of Shirley Ryan’s outpatient clinics, but by the end of 2023, she had used up the 30 physical therapy and 30 occupational therapy visits the Blue Cross plan allowed. Because the plan ran from July to June, she had no sessions left for the first half of 2024.

“I couldn't do much,” Villar said. “I made lots of progress there, but I was still on crutches.”

Dave Van de Walle, a Blue Cross spokesperson, said in an email that the insurer does not comment on individual cases. Razia Hashmi, vice president for clinical affairs at the Blue Cross Blue Shield Association, said in a written statement that patients who have run out of sessions should “explore alternative treatment plans” including home exercises.

Villar received some extra sessions from the Falling Forward Foundation. While her plan year has reset, Villar is postponing most therapy sessions until after her next surgery so she will be less likely to run out again. Bracamontes said her daughter still can’t feel or move her right foot and needs three more operations: one to relieve nerve pain, and two to try to restore mobility in her foot by lengthening her Achilles tendon and transferring a tendon in her left leg into her right.

“Therapy caps are very unfair because everyone’s situation is different,” Villar said. “I really depend on my sessions to get me to a new normalcy. And not having that and going through all these procedures is scary to think about.”

Rationing Therapy

Most people who use all their sessions either stop going or pay out-of-pocket for extra therapy.

Amy Paulo, a 34-year-old Massachusetts woman recovering from two operations on her left leg, maxed out the 40 visits covered by Blue Cross Blue Shield of Massachusetts in 2024, so she spent $1,445 out-of-pocket for 17 therapy sessions.

Paulo needed physical therapy to recover from several surgeries to shorten her left leg to the length of her right leg — the difference a consequence of juvenile arthritis. Her recovery was prolonged, she said, because her femur didn’t heal properly after one of the operations, in which surgeons cut out the middle of her femur and put a rod in its place.

“I went ballistic on Blue Cross many, many times,” said Paulo, who works with developmentally delayed children.”

Amy McHugh, a Blue Cross spokesperson, declined to discuss Paulo’s case. In an email, she said most employers who hire Blue Cross to administer their health benefits choose plans with “our standard” 60-visit limit, which she said is more generous than most insurers offer, but some employers “choose to allow for more or fewer visits per year.”

Paulo said she expects to restrict her therapy sessions to once a week instead of the recommended twice a week because she’ll need more help after an upcoming operation on her leg.

“We had to plan to save my visits for this surgery, as ridiculous as it sounds,” she said.

Medicare Is More Generous

People with commercial insurance plans face more hurdles than those on Medicare, which sets dollar thresholds on therapy each year but allows therapists to continue providing services if they document medical necessity. This year the limits are $2,410 for physical and speech therapy and $2,410 for occupational therapy.

Private Medicare Advantage plans don’t have visit or dollar caps, but they often require prior authorization every few visits. The U.S. Senate Permanent Subcommittee on Investigations found last year that MA plans deny requests for physical and occupational therapy at hospitals and nursing homes at higher rates than they reject other medical services.

Therapists say many commercial plans require prior authorization and mete out approvals parsimoniously. Insurers often make therapists submit detailed notes, sometimes for each session, documenting patients’ treatment plans, goals, and test results showing how well they perform each exercise.

“It’s a battle of getting visits,” said Jackee Ndwaru, an occupational therapist in Jacksonville, Florida. “If you can’t show progress they’re not going to approve.”

An Insurer Overruled

Marjorie Haney’s insurance plan covered 20 therapy sessions a year, but Anthem Blue Cross Blue Shield approved only a few visits at a time for the rotator cuff she tore in a bike accident in Maine. After 13 visits in 2021, Anthem refused to approve more, writing that her medical records “do not show you made progress with specific daily tasks,” according to the denial letter.

Haney, a physical therapist herself, said the decision made no sense because at that stage of her recovery, the therapy was focused on preventing her shoulder from freezing up and gradually expanding its range of motion.

“I went through those visits like they were water,” Haney, now 57, said. “My range was getting better, but functionally I couldn’t use my arm to lift things.”

Haney appealed to Maine’s insurance bureau for an independent review. In its report overturning Anthem’s decision, the bureau’s physician consultant, William Barreto, concluded that Haney had made “substantial improvement” — she no longer needed a shoulder sling and was able to return to work with restrictions. Barreto also noted that nothing in Anthem’s policy required progress with specific daily tasks, which was the basis for Anthem’s refusal.

“Given the member’s substantial restriction in active range of motion and inability to begin strengthening exercises, there is remaining deficit that requires the skills and training of a qualified physical therapist,” the report said.

Anthem said it requires repeated assessments before authorizing additional visits “to ensure the member is receiving the right care for the right period of time based on his or her care needs.” In the statement provided by Stephanie DuBois, an Anthem spokesperson, the insurer said this process “also helps prevent members from using up all their covered treatment benefits too quickly, especially if they don’t end up needing the maximum number of therapy visits.”

In 2023, Maine passed a law banning prior authorization for the first 12 rehab visits, making it one of the few states to curb insurer limitations on physical therapy. The law doesn’t protect residents with plans based in other states or plans from a Maine employer who self-insures.

Haney said after she won her appeal, she spaced out the sessions her plan permitted by going once weekly. “I got another month,” she said, “and I stretched it out to six weeks.”

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The Host Julie Rovner KFF Health News @jrovner 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.

As had been rumored for weeks, Health and Human Services Secretary Robert F. Kennedy Jr. unveiled a plan to reorganize the department. It involves the downsizing of its workforce, which formerly was roughly 80,000 people, by a quarter and consolidating dozens of agencies that were created and authorized by Congress.

Meanwhile, in just the past week, HHS abruptly cut off billions in funding to state and local public health departments, and canceled all research studies into covid-19, as well as diseases that could develop into the next pandemic.

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

Panelists Maya Goldman Axios @mayagoldman_ Read Maya's stories Joanne Kenen Johns Hopkins University and Politico @JoanneKenen Read Joanne's stories. Alice Miranda Ollstein Politico @AliceOllstein Read Alice's stories.

Among the takeaways from this week’s episode:

• As federal health officials reveal the targets of a significant workforce purge and reorganization, the GOP-controlled Congress has been notably quiet about the Trump administration’s intrusions on its constitutional powers. Many of the administration’s attempts to revoke and reorganize federally funded work are underway despite Congress’ previous approval of that funding. And while changes might be warranted, reviewing how the federal government works (or doesn’t) — in the public forums of congressional hearings and floor debate — is part of Congress’ responsibilities.
• The news of a major reorganization at HHS also comes before the Senate finishes confirming its leadership team. New leaders of the National Institutes of Health and the FDA were confirmed just this week; Mehmet Oz, the nominated director of the Centers for Medicare & Medicaid Services, had not yet been confirmed when HHS made its announcement; and President Donald Trump only recently named a replacement nominee to lead the Centers for Disease Control and Prevention, after withdrawing his first pick.
• While changes early in Trump’s second term have targeted the federal government and workforce, the impacts continue to be felt far outside the nation’s capital. Indeed, cuts to jobs and funding touch every congressional district in the nation. They’re also being felt in research areas that the Trump administration claims as priorities, such as chronic disease: The administration said this week it will shutter the office devoted to studying long covid, a chronic disease that continues to undermine millions of Americans’ health.
• Meanwhile, in the states, doctors in Texas report a rise in cases of children with liver damage due to ingesting too much vitamin A — a supplement pushed by Kennedy in response to the measles outbreak. The governor of West Virginia signed a sweeping ban on food dyes and additives. And a woman in Georgia who experienced a miscarriage was arrested in connection with the improper disposal of fetal remains.

Also this week, Rovner interviews KFF senior vice president Larry Levitt about the 15th anniversary of the signing of the Affordable Care Act and the threats the health law continues to face.

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

Julie Rovner: CNN’s “State Lawmakers Are Looking To Ban Non-Existent ‘Chemtrails.’ It Could Have Real-Life Side Effects,” by Ramishah Maruf and Brandon Miller. 

Alice Miranda Ollstein: The New York Times Wirecutter’s “23andMe Just Filed for Bankruptcy. You Should Delete Your Data Now,” by Max Eddy. 

Maya Goldman: KFF Health News’ “‘I Am Going Through Hell’: Job Loss, Mental Health, and the Fate of Federal Workers,” by Rachana Pradhan and Aneri Pattani. 

Joanne Kenen: The Atlantic’s “America Is Done Pretending About Meat,” by Yasmin Tayag. 

Also mentioned in this week’s podcast:

• The New York Times’ “West Virginia Bans 7 Artificial Food Dyes, Citing Health Concerns,” by Alice Callahan.
• The Washington Post’s “Why I Left My Job Leading Public Health Messaging for the CDC,” by Kevin Griffis.
• Politico’s “The Limits of RFK Jr.’s Power,” by Joanne Kenen.

Click to open the transcript Transcript: The Ax Falls at HHS

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

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, March 27, at 10 a.m. As always, news happens fast — really fast this week — and things might well have changed by the time you hear this. So, here we go. 

Today we are joined via videoconference by Alice Miranda Ollstein of Politico. 

Alice Miranda Ollstein: Hello. 

Rovner: Maya Goldman of Axios News. 

Maya Goldman: Great to be here. 

Rovner: And Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine. 

Joanne Kenen: Hi everybody. 

Rovner: Later in this episode we’ll have my interview with KFF Senior Vice President Larry Levitt, who will riff on the 15th anniversary of the signing of the Affordable Care Act and what its immediate future might hold. But first, this week’s news. 

So for this second week in a row, we have news breaking literally as we sit down to tape, this time in the form of an announcement from the Department of Health and Human Services with the headline “HHS Announces Transformation to Make America Healthy Again.” The plan calls for 10,000 full-time employees to lose their jobs at HHS, and when combined with early retirement and other reductions, it will reduce the department’s workforce by roughly 25%, from about 82,000 to about 62,000. It calls for creation of a new “Administration for a Healthy America” that will combine a number of existing HHS agencies, including the Health Resources and Services Administration, the Agency for Toxic Substances and Disease Registry, and the National Institute for Occupational Safety and Health under one umbrella. 

Reading through the announcement, a lot of it actually seems to make some sense, as many HHS programs do overlap. But the big overriding question is: Can they really do this? Isn’t this kind of reorganization Congress’ job? 

Ollstein: Congress has not stood up for itself in its power-of-the-purse role so far in the Trump administration. They have stood by, largely, the Republican majorities in the House and Senate, or they’ve offered sort of mild concerns. But they have not said, Hey guys, this is our job, all of these cuts that are happening. There’s talk of a legislative package that would codify the DOGE [Department of Government Efficiency] cuts that are already happening, rubber-stamping it after the fact. But Congress has not made moves to claw back its authority in terms of saying, Hey, we approved this funding, and you can’t just go back and take it. There’s lawsuits to that effect, but not from the members — from outside groups, from labor unions, from impacted folks, but not our dear legislative branch. 

Rovner: You know, Joanne, you were there for a lot of this. We covered the creation of a lot of these agencies. Agency for Healthcare Research and Quality, I covered the creation of its predecessor agency, which there were huge compromises that went into this, lots of policymaking. It just seems that RFK [Robert F. Kennedy] Jr. going to say: We don’t actually care all these things you did. We’re just going to redo the whole thing. 

Kenen: As many of the listeners know, many laws that Congress passes have to be reauthorized every five years or every 10 years. Five is the most typical, and they often don’t get around to it and they extend and blah, blah, blah, blah, blah. But basically the idea is that things do change and things do need to be reevaluated. So, normally when you do reauthorization — we all just got this press release announcing all these mergers of departments and so forth at HHS. None of us are experts in procurement and IT. Maybe those two departments do need to be merged. I mean, I don’t know. That’s the kind of thing that, reauthorization, Congress looks at and Congress thinks about. Well, and agencies and legislation do get updated. Maybe the NIH [National Institutes of Health] doesn’t need 28 institutes and they should have 15 or whatever. But it’s just sort of this, somebody coming in and waving a magic DOGE wand, and Congress is not involved. And there’s not as much public input and expert input as you’d have because Congress holds hearings and listens to people who do have expertise. 

So it’s not just Congress not exercising power to make decisions. It’s also Congress not deliberating and learning. I mean all of us learned health policy partly by listening to experts at congressional panels. We listen to people at Finance, and Energy and Commerce, and so forth. So it’s not just Congress’ voice being silenced. It’s this whole review and fact-based — and experts don’t always agree and Congress makes the final call. But that’s just been short-circuited. And I mean we all know there’s duplication in government, but this isn’t the process we have historically used to address it. 

Rovner: You know, one other thing, I think they’re merging agencies that are in different locations, which on the one hand might make sense. But if you have one central IT or one central procurement agency in Washington or around Washington, you’ve got a lot of these organizations that are outside of Washington. And they’re outside of Washington because members of Congress put them there. A lot of them are in particular places because they were parochial decisions made by Congress. That may or may not make sense, but that’s where they are. It might or might not make sense. Maya, sorry I interrupted you. 

Goldman: No, I was just going to add to Joanne’s point. Julie, I think before we started recording you mentioned that the administration is saying: We’ve thought this all out. These are well-researched decisions. But they’ve been in office for two months. How much research can you really do in that time and how intentional can those decisions really be in that time frame? 

Ollstein: Especially because all of the leaders aren’t even in place yet. Some people were just confirmed, which we’re going to talk about. Some people are on their way to confirmation but not there yet. They haven’t had the chance to talk to career staff, figure out what the redundancies are, figure out what work is currently happening that would be disrupted by various closures and mergers and stuff. So Maya’s exactly right on that. 

Goldman: You know there’s — the administration chose a lead for HRSA and other offices. And so what happens to those positions now? Do they just get demoted effectively because they’re no longer heads of offices? I would be pretty— 

Rovner: But we have a secretary of education whose job is to close the department down, so—. 

Goldman: Good point. 

Rovner: That’s apparently not unprecedented in this administration. Well, as Alice was saying, into this maelstrom of change comes those that President [Donald] Trump has selected to lead these key federal health agencies. The Senate Tuesday night confirmed policy researcher Jay Bhattacharya to head the NIH and Johns Hopkins surgeon and policy analyst Marty Makary to head the Food and Drug Administration. Bhattacharya was approved on a straight party-line vote, while Makary, who I think it’s fair to say was probably the least controversial of the top HHS nominees, won the votes of three Democrats: Minority Whip Dick Durbin of Illinois and New Hampshire’s Democrats, [Sens.] Maggie Hassan and Jeanne Shaheen, along with all of the Republicans. What are any of you watching as these two people take up their new positions? 

Kenen: Well, I mean, the NIH, Bhattacharya — who I hope I’ve learned to pronounce correctly and I apologize if I have not yet mastered it — he’s really always talked about major reorganization, reprioritization. And as I said, maybe it’s time to look at some overlap, and science has changed so much in the last decade or so. I mean are the 28 — I think the number’s 28 — are the 28 current institutes the right— 

Rovner: I think it’s 27. 

Kenen: Twenty-seven. I mean, are there some things that need to be merged or need to be reorganized? Probably. You could make a case for that. But that’s just one thing. The amount of cuts that the administration announced before he got there, and there is a question in some things he’s hinted at, is he going to go for that? His background is in academia, and he does have some understanding of what this money is used for. We’ve talked before, when you talk to a layperson, when you hear the word “overhead,” “indirect costs,” what that conjures up to people as waste, when in fact it’s like paying for the electricity, paying for the staff to comply with the government regulations about ethical research on human beings. It’s not parties. It’s security. It’s cleaning the animal cages. It’s all this stuff. So is he going to cut as deeply as universities have been told to expect? We don’t know yet. And that’s something that every research institution in America is looking at. 

The FDA, he’s a contrarian on certain things but not across the board. I mean, as you just said, Julie, he’s a little less controversial than the others. He is a pancreatic surgeon. He does have a record as a physician. He has never been a regulator, and we don’t know exactly where his contrarian views will be unconventional and where — there’s a lot of agreement with certain things Secretary Kennedy wants to do, not everything. But there is some broad agreement on, some of his food issues do make sense. And the FDA will have a role in that. 

Rovner: I will say that under this reorganization plan the FDA is going to lose 3,500 people, which is a big chunk of its workforce. 

Kenen: Well things like moving SAMHSA [the Substance Abuse and Mental Health Services Administration], which is the agency that works on drug abuse within and drug addiction within HHS, that’s being folded into something else. And that’s been a national priority. The money was voted to help with addiction on a bipartisan basis several times in recent years. The grants to states, that’s all being cut back. The subagency with HHS is being folded into something else. And we don’t know. We know 20,000 jobs are being cut. The 10 announced today and the 10 we already knew about. We don’t know where they’re all coming from and what happens to the expertise and experience addressing something like the addiction crisis and the drug abuse crisis in America, which is not partisan. 

Rovner: All right. Well we’ll get to the cuts in a second. Also on Tuesday, the Senate Finance Committee voted, also along party lines, to advance to the Senate floor the nomination of Dr. Mehmet Oz to head the Centers for Medicare & Medicaid Services. And while he would seem likely to get confirmed by the full Senate, I did not have on my bingo card Dr. Oz’s nomination being more in doubt due to Republicans than Democrats. Did anybody else? 

Ollstein: Based on our reporting, it’s not really in doubt. [Sen.] Josh Hawley has raised concerns about Dr. Oz being too squishy on abortion and trans health care, but it does not seem that other Republicans are really jumping on board with that crusade. It sort of reminds me of concerns that were raised about RFK Jr.’s background on abortion that pretty much just fizzled and Republicans overwhelmingly fell in line. And that seems to be what’s going to happen now. Although you never know. 

Rovner: At least it hasn’t been, as you point out, it hasn’t failed anybody else. Well, the one nominee who did not make it through HHS was former Congressman Dave Weldon to head the CDC [Centers for Disease Control and Prevention]. So now we have a new nominee. It’s actually the acting director, Susan Monarez, who by the way has a long history in federal health programs but no history at the CDC. Who can tell us anything about her? 

Goldman: She seems like a very interesting and in some ways unconventional pick, especially for this administration. She was a career civil servant, and she worked under the Obama administration. And it’s interesting to see them be OK with that, I think. And she also has a lot of health care background but not in CDC. She’s done a lot of work on AI in health care and disaster preparedness, I think. And clearly she’s been leading the CDC for the last couple months. So she knows to that extent. But it will be very interesting when she gets around to confirmation hearings to hear what her priorities are, because we really have no idea. 

Rovner: Yeah, she’s not one of those good-on-Fox News people that we’ve seen so many of in this administration. So while Monarez’s nomination seems fairly noncontroversial, at least so far, the nominee to be the new HHS inspector general is definitely not. Remember that President Trump fired HHS IG Christi Grimm just days after he took office, along with the IGs of several other departments. Grimm is still suing to get her job back, since that firing violated the terms of the 1978 Inspector General Act. But now the administration wants to replace her with Thomas Bell, who’s had a number of partisan Republican jobs for what’s traditionally been a very nonpartisan position and who was fired by the state of Virginia in 1997 for apparently mishandling state taxpayer funds. That feels like it might raise some eyebrows as somebody who’s supposed to be in charge of waste, fraud, and abuse. Or am I being naive? 

Goldman: My eyebrows were definitely raised when I saw that news. I, to be honest, don’t know very much about him but will be very interested to see how things go, especially given that fraud, waste, and abuse and rooting out fraud, waste, and abuse are high priorities for this administration, but also things that are very up to interpretation in a certain way. 

Ollstein: Yes, although it’s clearly been very mixed on that front because the administration is also dismantling entire agencies that go after fraud and abuse— 

Goldman: Exactly. 

Ollstein: —like the Consumer Financial Protection Bureau. So there is some mixed messaging on that front for sure. 

Rovner: Well, as Joanne mentioned, the DOGE cuts continue at the NIH. In just the last week, billions of dollars in grants have been terminated that were being used to study AIDS and HIV, covid and other potential pandemic viruses, and climate change, among other things. The NIH also closed its office studying long covid. Thank you, Alice, for writing that story. This is, I repeat, not normal. NIH only generally cancels grants that have been peer reviewed and approved for reasons of fraud or scientific misconduct, yet one termination letter obtained by Science Magazine simply stated, quote, “The end of the pandemic provides cause to terminate COVID-related grant funds.” Why aren’t we hearing more about this, particularly for members of Congress whose universities are the ones that are being cut? 

Kenen: I mean, the one Republican we heard at the very beginning was [Sen.] Katie Britt because the University of Alabama is a big, excellent, and well-respected national medical and science center, and they were targeted for a lot of cuts. She’s the only Republican, really, and she got quiet. I mean, she raised her voice very loud and clear. We may go into a situation — and everybody sort of knows this is how Washington sometimes works — where individual universities will end up negotiating with NIH over their funds and that— 

Rovner: Columbia. Cough, cough. 

Kenen: Right. And Alabama may come out great and Columbia might not, or many other leading research institutions. But these job cuts affect people in every congressional district across the country. And the funding cuts affect every congressional district across the country. So it’s not just their constitutional responsibilities. It’s also, like, their constituents are affected, and we’re not hearing it. 

Rovner: And as I point out for the millionth time, it’s not a coincidence that these things are located in every congressional district. Members of Congress, if not the ones who are currently in office then their predecessors, lobbied and worked to get these funds to their states and to their district. And yet the silence is deafening. 

Ollstein: To state the obvious, one, covid is not over. People are still contracting it. People are still dying from it. But not only that, a lot of this research was about preparing for the inevitable next pandemic that we know is coming at some point and to not be caught as unawares as we were this past time, to be more prepared, to have better tools so that there don’t have to be widespread lockdowns, things can remain open because we have more effective prevention and treatment efforts. And that’s what’s being defunded here. 

Kenen: The other thing is that long covid is in fact a chronic disease and even though it’s caused by an infectious disease, a virus. But people have long covid but it is a chronic disease, and HHS says that’s their priority, chronic disease, but they’re not including long covid. And there’s also more and more. When we think of long covid, we think of brain fog and being short of breath and tired and unable to function. There’s increasing evidence or conversation in the medical world about other problems people have long-term that probably stem from covid infections or multiple covid infections. So this is affecting millions of Americans as a chronic disease that is not well understood, and we’ve just basically said, That one doesn’t count, or: We’re not going to pay attention to that one. We’re going to, you know, we’re looking at diabetes. Yeah, we need to look at diabetes. That’s one of the things that Kennedy has bipartisan support. This country does not eat well. I wrote about this about a week ago. But what he can and can’t do, because he can’t wave a magic wand and have us all eating well. But it’s very selective in how we’re defining both the causes of diseases and what diseases we’re prioritizing. We basically just shrunk addiction. 

Goldman: In the press release announcing the reorganization this morning, there was a line talking about how the HHS is going to create this new Administration for a Healthy America to investigate chronic disease and to make sure that we have, I think it was, wholesome food, clean water, and no environmental toxins, in order to prevent chronic disease. And those are the only three things that it mentions that lead to chronic disease. 

Rovner: And none of which are under HHS’ purview. 

Goldman: Right, right. Yeah. 

Rovner: With the exception of— 

Goldman: There are things that HHS does in that space. But yeah, we’re being very selective about what constitutes a chronic disease and what causes a chronic disease. If you’re trying to actually solve a problem, maybe you should be more expansive. 

Kenen: So HHS has some authority over food, not significant authority of it, but it is shared with the USDA [U.S. Department of Agriculture]. Like school lunches are USDA, the nutritional guidelines are shared between USDA and HHS, things like that. So yeah, it has some control about, over food but not entirely control over food. 

And then EPA [Environmental Protection Agency], which has also been completely reoriented to be a pro-fossil-fuel agency, is in charge of clean water and the environmental contaminants. That’s not an HHS bailiwick. And Kennedy is not aligned with other elements of the administration on environmental issues. And also genetics, right? Genetics is also, you know, who knows? That’s NIH? But who knows what’s going to happen to the National Cancer Institute and other genetic research at NIH? We don’t know. 

Rovner: Yes. Clearly much to be determined. Well, speaking of members of Congress whose states and districts are losing federal funds, federal aid is also being cut by the CDC. In a story first reported by NBC News, CDC is reportedly clawing back more than $11 billion in covid-related grants. Among other things, that’s impacting funding that was being used in Texas to fight the ongoing measles outbreak. How exactly does clawing back this money from state and local public health agencies make America healthy again? 

Goldman: That’s a great question, and I’m curious to see how it plays out. I don’t have the answer. 

Rovner: And it’s not just domestic spending. The fate of PEPFAR [the President’s Emergency Plan for AIDS Relief], the international AIDS/HIV program that’s credited with saving more than 20 million lives, remains in question. And The New York Times has gotten hold of a spreadsheet including more global health cuts, including those for projects to fight malaria and to pull the U.S. out of Gavi. That’s the global vaccine alliance that’s helped vaccinate more than 1.1 billion children in 78 countries. Wasn’t there a court order stopping all of these cuts? 

Ollstein: So there was for some USAID [U.S. Agency for International Development] work, but not all of these things fall under that umbrella. And that is still an ongoing saga that has flipped back and forth depending on various rulings. But I think it’s worth pointing out, as always, that infectious diseases don’t respect international borders, and any pullback on efforts to fight various things abroad inevitably will impact Americans as well. 

Rovner: Yeah. I mean, we’ve seen these measles cases obviously in Texas, but now we’re getting measles cases in other parts of the country, and many of them are people coming from other countries. We had somebody come through Washington, D.C.’s Union Station with measles, and we’ve had all of these alerts. I mean, this is what happens when you don’t try and work with infectious diseases where they are, then they spread. That’s kind of the nature of infectious disease. 

Well, at the same time, HHS Secretary RFK Jr. is putting his Make America Healthy Again agenda into practice in smaller ways as well. First up, remember that study that Kennedy promised again to look into any links between childhood vaccines and autism? It will reportedly be led by a vaccine skeptic who was disciplined by the Maryland Board of Physicians for practicing medicine without a license and who has pushed the repeatedly debunked assertion that autism can be caused by the preservative thimerosal, which used to be used in childhood vaccines but has long since been discontinued. One autism group referred to the person who’s going to be running this study as, quote, “a known conspiracy theorist and quack.” Sen. [Bill] Cassidy seemed to promise us that this wasn’t going to happen. 

Kenen: Well, we think that Sen. Cassidy was promised it wouldn’t happen, and it’s all happening. And in fact, when a recent hearing, he was very outspoken that there’s no need to research the autism link, because it’s been researched over and over and over and over and over again and there’s a lot of reputable scientific evidence establishing that vaccination does not cause autism. We don’t know what causes autism, so— 

Rovner: But we know it’s not thimerosal. 

Kenen: Right, which has been removed from many vaccines, in fact, and autism rates went up. So Cassidy has not come out and said, Yeah, I’m the guy who pulled the plug on Weldon. But it’s sort of obvious that he had, at least was, a role in. It is widely understood in Washington that he and a few other Republicans, [Sens. Lisa] Murkowski and [Susan] Collins, I believe — I think Murkowski said it in public — said that the CDC could not go down that route. 

Rovner: Well, I would like to be inadvertently invited to the Signal chat between Secretary Kennedy and Sen. Cassidy. I would very much wish to see that conversation. 

Meanwhile, in Texas, where HHS just confiscated public health funding, as we said, a hospital in Lubbock says it’s now treating children with liver damage from too much vitamin A, which Secretary Kennedy recommended as a way to prevent and or treat measles. Which it doesn’t, by the way. But that points to, that some of these — I hesitate of how to describe these people who are “making America healthy again.” But some of the things that they point to can be actively dangerous, not just not helpful. 

Goldman: Yeah. And I think it also shows how much messaging from the top matters, right? People are listening to what Secretary Kennedy says, which makes sense because he’s the secretary of health and human services. But if he’s pedaling misinformation or disinformation, that can have real harmful effects on people. 

Kenen: And his messages are being amplified even if some people are not, their parents, who aren’t maybe directly tuned in to what Kennedy personally is saying, but they follow various influencers on health who are then echoing what Kennedy’s saying about vitamin A. Yeah, we all need vitamin A in our diet. It’s something, part of healthy nutrition. But this supplement’s unnecessary, or excess supplements, vitamin A or cod liver oil or other things that can make them sick, including liver damage. And that’s what we’re seeing now. Vitamin A does have a place in measles under very specific circumstances, under medical supervision in individual cases. But no, people should not be going to the drugstore and pouring huge numbers of tablets of vitamin C down their children’s throat. It’s dangerous. 

Rovner: And actually the head of communications at the CDC not only quit his job this week but wrote a rather impassioned op-ed in The Washington Post, which I will post in our show notes, talking about he feels like he cannot work for an agency that is not giving advice that is based in science and that that’s what he feels right now. Again, that’s before we get a new head of the CDC. Well, MAHA is apparently spreading to the states as well. West Virginia Republican Gov. Patrick Morrisey this week signed a bill to ban most artificial food coloring and two preservatives in all foods sold in the state starting in 2028. Nearly half the rest of the states are considering similar types of bans. But unless most of those other states follow, companies aren’t going to remake their products just for West Virginia, right? 

Kenen: West Virginia is not big enough, but they sometimes do remake their products for California, which is big. The whole food additive issue is, traditionally the food manufacturers have had a lot of control over deciding what’s safe. It’s the industry that has decided. Kennedy has some support across the board and saying that’s too loose and we should look at some of these additives that have not been examined. There are others, including some preservatives, that have been studied and that are safe. Some preservatives have not been studied and should be studied. There are others that have been studied and are safe and they keep food from going rotten or they can prevent foodborne disease outbreaks. Something that does make our food healthy, we probably want to keep them in there. So, and are there some that— 

Rovner: I think people get mixed up between the dyes and the preservatives. Dyes are just to make things look more attractive. The preservatives were put there for a reason. 

Kenen: Right. And there’s some healthy ways of making dyes, too, if you need your food to be red. There’s berry abstracts instead of chemical extracts. So things get overly simplified in a way that does not end up necessarily promoting health across the board. 

Rovner: Well, not all of the news is coming from the Trump administration. The Supreme Court next week will hear a case out of South Carolina about whether Medicaid recipients can sue to enforce their right to get care from any qualified health care providers. But this is really another case about Planned Parenthood, right, Alice? 

Ollstein: Yep. If South Carolina gets the green light to kick Planned Parenthood out of its Medicaid program, which is really what is at the heart of this case, even though it’s sort of about whether beneficiaries can sue if their rights are denied. A right isn’t a right if you can’t enforce it, so it’s expected that a ruling in that direction would cause a stampede of other conservative states to do the same, to exclude Planned Parenthood from their Medicaid programs. Many have tried already, and that’s gone around and around in the courts for a while, and so this is really the big showdown at the high court to really decide this. 

And as I’ve been writing about, this is just one of many prongs of the right’s bigger strategy to defund Planned Parenthood. So there are efforts at the federal level. There are efforts at the state level. There are efforts in the courts. They are pushing executive actions on that front. We can talk. There was some news on Title X this week. 

Rovner: That was my next question. Go ahead. 

Ollstein: Some potential news. 

Rovner: What’s happening with Title X? 

Ollstein: Yeah. So HHS told us when we inquired that nothing’s final yet, but they’re reviewing tens of millions of Title X federal family planning grants that currently go to some Planned Parenthood affiliates to provide subsidized contraception, STI [sexually transmitted infection] screenings, various non-abortion services. And so they are reviewing those grants now. They are supposed to be going out next week, so we’ll have to see what happens there. There was some sort of back-and-forth in the reporting about whether they’re going to be cut or not. 

Rovner: What surprises me about the Title X grant, and there has been, there have been efforts, as you point out, going back to the 1980s to kick Planned Parenthood out of the Title X program. That’s separate from kicking Planned Parenthood out of Medicaid, which is where Planned Parenthood gets a lot more money. 

But the first Trump administration did kick Planned Parenthood out of Title X, and they went through the regulatory process to do it. And then the Biden administration went through the regulatory process to rescind the Trump administration regulations that kicked them out. Now it looks like the Trump administration thinks that it can just stop it without going through the regulatory process, right? 

Ollstein: That’s right. So not only are they going around Congress, which approves Title X funding every year, they are also going around their own rulemaking and just going for it. Although, again, it has not been finally announced whether or not there will be cuts. They’re just reviewing these grants. 

Rovner: But I repeat for those in the back, this is not normal. It’s not how these things are supposed to work it. 

Kenen: It’s normal now, Julie. 

Rovner: Yeah, clearly it’s becoming normal. Well, finally this week, another case of a woman arrested for a poor pregnancy outcome. This happened in Georgia where the woman suffered a natural miscarriage, not an abortion, which was confirmed by the medical examiner, but has been arrested on charges of improperly disposing of the fetal remains. Alice, this is turning into a trend, right? 

Ollstein: Yes. And it’s important for people to remember that this was happening before Dobbs. This was happening when Roe v. Wade was still in place. This has happened since then in states where abortion is legal. Some prosecutors are finding other ways to charge people. Whether it’s related to, yeah, the disposal of the fetus, whether it’s related to substance abuse, substance use during pregnancy, even sometimes the use of substances that are actually legal, but people have been charged, arrested for using them during pregnancy. So yes, it’s important to remember that even if there’s not a quote-unquote “abortion ban” on the books, there are still efforts underway in many places to criminalize pregnancy loss however it happens, naturally or via some abortifacient method. 

Rovner: Well, something else we’ll be keeping an eye on. All right, that’s as much news as we have time for this week. Now, we will play my interview with KFF’s Larry Levitt. Then we’ll come back and do our extra credits. 

So, last Sunday was the 15th anniversary of President Barack Obama’s signing of the original Affordable Care Act. And before you ask, yes, I was there in the White House East Room that day. Anyway, to discuss what the law has meant to the U.S. health system over the last decade and a half and what its future might be, I am so pleased to welcome back to the podcast my KFF colleague Larry Levitt, executive vice president for health policy. 

Larry, thanks for joining us again. 

Larry Levitt: Oh, thanks for having me. 

Rovner: So, [then-House Speaker] Nancy Pelosi was mercilessly derided when she said that once the American people learned exactly what was in the ACA, they would come to like it. But that’s exactly what’s happened, right? 

Levitt: It is. Yes. I think people took her comments so out of context, but the ACA was incredibly controversial and divisive when it was being debated. Frankly, after a pass, the ACA became pretty unpopular. If you go back to 2014, just before the main provisions of the ACA were being implemented, there was all this controversy over the individual mandate, over people’s plans being canceled because they didn’t comply with the ACA’s rules. And then, of course, healthcare.gov, the website, didn’t work. So the ACA was very underwater in public opinion. And even after it first went into effect and people started getting coverage, that didn’t necessarily turn around immediately, there was still a lot of divisiveness over the law. 

What changed is, No. 1, over time, more and more people got covered, people with preexisting conditions, people who couldn’t afford health insurance, people who turned 26 or could stay on their parents’ plans until 26 and then could enroll in the ACA or Medicaid after turning 26. All these people got coverage and started to see the benefits of the law. The other thing that happened was in 2017, Republicans tried unsuccessfully to repeal and replace the ACA, and people really realized what they could be missing if the law went away. 

Rovner: So what’s turned out to be the biggest change to the health care system as a result of the ACA? And is it what you originally thought it would be? 

Levitt: Well, yeah, in this case it was not a surprise, I think. The biggest change was the number of people getting covered and a big decrease in the number of people uninsured. We have been at the lowest rate of uninsurance ever recently due to the ACA and some of the enhancements, which we’ll probably talk about. And that was what the law was intended to do, was to get more people covered. And I think you’d have to call that a success, in retrospect. 

Rovner: I will say I was surprised by how much Medicaid dominated the increased coverage. I know now it’s sort of balanced out because of reductions in premiums for private coverage, I think in large part. But I think during the 2017 fight to undo the ACA, that was the first time since I’ve been covering Medicaid that I think people really realized how big and how important Medicaid is to the health care system. 

Levitt: No, that’s right. I mean the ACA marketplace, healthcare.gov, the individual mandate, preexisting condition protections, I mean, those are the things that got a lot of the public attention. But in fact, yeah, in the early years of the ACA, I mean really up until just the last couple years, the Medicaid expansion in the ACA was really the engine of coverage. And that’s not what a lot of people expected. In fact, Congressional Budget Office in their original projections kind of got that wrong, too. 

Rovner: So what was the biggest disappointment about something the ACA was supposed to do but didn’t do or didn’t do very well? 

Levitt: Yeah, I mean, I would have to point to health care costs as the biggest disappointment. The ACA really wasn’t intended to address health care costs head-on. And that was both a policy judgment but also a political decision. If you go back to the debate over the Clinton health plan in the early ’90s, which failed spectacularly — you and I were both there — it addressed health care costs aggressively, took on every segment of the health care industry, and died under that political weight. The political judgment of Obama and Democrats in Congress with the ACA was to not take on those vested health care interests and not really address health care costs head-on. That’s what enabled it to get passed. But it sort of lacked teeth in that regard. There were some things in the ACA like expansion of ACOs, accountable care organizations, which maybe had some promise but frankly have not done a whole lot. 

Rovner: And of course, Congress undoing what teeth there were in the ensuing years probably didn’t help very much, either. 

Levitt: No. I mean there was this provision in the ACA called the Cadillac plan tax, right? The idea was to tax so-called Cadillac health plans, very generous health plans. That probably would’ve had an effect. I’m not sure it would’ve done what people intended for it to do. I mean, I think it would’ve actually shifted costs to workers and caused deductibles to rise even higher. But no one but economists liked that Cadillac plan tax, and it was repealed. 

Rovner: So, as you mentioned, you and I are both also veterans of the 1993, 1994 failed effort by President Bill Clinton to overhaul the nation’s health care system, which, like the fight over the ACA, featured large-scale, deliberate mis- and disinformation by opponents about what a major piece of health legislation could do. In fact, and I have done lots of stories on this, scare tactics about the possible impact of providing universal health insurance coverage date back to the early 1900s and have been a feature of every single major health care debate since then. What did we learn from the ACA debate about combating this kind of deliberate misinformation? 

Levitt: Yeah, you’re so right about the disinformation, and I was actually looking yesterday — we have a timeline of health policy over the decades in our KFF headquarters in San Francisco, and we have an ad up there from the debate over the Truman health plan. You and I were not there for that debate. 

Rovner: Thank you. 

Levitt: And the AMA [American Medical Association] opposed that as socialized medicine and ran these ads featuring robots who were going to be your doctor if the Truman plan passed. So this is certainly nothing new. And we saw it in the ACA with death panels, right? I mean, which just spread like wildfire through the media and over social media. I would kind of hope we learned some lessons from the ACA. I’m not sure we have. And I kind of worry that with declining trust in institutions, particularly government institutions, I just wonder whether we’ll get back to a place where, yeah, we’ll disagree about policy. There will be spin, there will be scare tactics, but at least there’s some trusted source of facts and data that we can rely on, and I’m not so hopeful there. 

Rovner: Somebody asked former [HHS] Secretary Kathleen Sebelius at a 15th-anniversary event what she regretted most about not having in the ACA, and she said, With all the talk of our actually taking over the health care system, we should have just taken over the health care system, since that’s what everybody was accusing it of. It might’ve worked better. 

Levitt: Yeah, there is — we could have a whole other session on “Medicare for All” and single payer and the pros and cons of that. But one thing I think we did learn from the ACA, that complexity is just a huge problem. Even what’s supposed to be the simplest part of our health care system now, Medicare, has become incredibly complex with Part A and Part B and Part C and Part D. Seniors kind of scratch their heads trying to figure out what to do, and the ACA even more so. 

And I think back to your original question, part of what made the ACA so hard for people to grasp is there was not one single, Oh, I’m going to sign up for the ACA. There were so many pieces of it. And over time, I’m not even sure people identify those pieces with the ACA anymore. 

Rovner: Yeah. Oh, no, I am surprised at how many younger people have no idea of what the insurance market was like before the ACA and how many people were simply redlined out of getting coverage. 

Levitt: Right. No. I mean, once you fix those problems, then people don’t see them anymore. 

Rovner: So let’s look forward quickly. It seemed at least for a while after the Republicans failed in 2017 to repeal and replace the law that efforts to undo it were finally over. But while this administration isn’t saying directly that they want to end it, they do have some big targets for undoing big pieces of it. What are some of those and what are the likelihood of them happening? 

Levitt: Yeah, in some ways we have an ACA repeal-and-replace debate going on right now, just not in name. And there are really kind of two big pieces on the table. One, of course, is potential cuts to Medicaid. The House has passed a budget resolution calling for $880 billion in cuts, by the Energy and Commerce Committee, which has jurisdiction over Medicaid. The vast majority of those cuts would have to be in Medicaid. The math is simply inescapable. And a big target on the table is that expansion of Medicaid that was in the ACA. 

And interestingly, you’re even hearing Republicans on the Hill talking about repealing the enhanced federal matching payments for the ACA Medicaid expansion and saying: Well, that’s not Medicaid cuts. That’s Obamacare. That’s not Medicaid. But 20 million people are covered under that Medicaid expansion. So it would lead to the biggest increase in the number of people uninsured we’ve ever had, if that gets repealed. 

The other issue really has not gotten a lot of attention yet this year, which is the extra premium assistance that was passed under [President Joe] Biden and by Democrats in Congress. And that’s led to a dramatic increase in ACA marketplace enrollment. ACA enrollment has more than doubled to 24 million since 2020. Those subsidies expire at the end of this year. So if Congress does nothing, people would be faced with very big out-of-pocket premium increases. And I suspect it’s going to get more attention as we get closer to the end of the year, but so far there hasn’t been a big debate over it yet. 

Rovner: Well, we’ll continue to talk about it. Larry Levitt, thank you so much. 

Levitt: Oh, thanks. Great conversation. 

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

Kenen: There’s a piece in The Atlantic this week called “America Is Done Pretending About Meat,” by Yasmin Tayag, and it’s basically saying that half of the people who said they were vegan or vegetarian were lying and that meat is very much back in fashion. That the new pejorative term — some of us may remember from 20 years or so ago, the “quiche eaters” —now it’s the “soy boy.” And that one of the new “in” foods, and I think this is the first for the podcast to use the phrase, raw beef testicles. So when we’re talking about political red meat, it’s not just political red meat. America is, we’re eating a lot more meat than we said we did, and we’re no longer saying that we’re not eating it. 

Rovner: Real red meat for the masses. 

Ollstein: For what it’s worth, “soy boy” has been a slur since the Obama administration. 

Kenen: Well, it’s just new to me. Thank you. I welcome the— 

Ollstein: I unfortunately have been in the online fever swamps where people say things like that. 

Kenen: Thank you, Alice. Now I know. 

Rovner: Maya, why don’t you go next? 

Goldman: My extra credit is a KFF Health News article by Rachana Pradhan and Aneri Pattani called “‘I Am Going Through Hell’: Job Loss, Mental Health, and the Fate of Federal Workers.” And I think it’s just worth remembering that there are real consequences, real mental health consequences to mass upheaval at the scale of what’s going on in the federal government right now with so many people losing their jobs and just not sure if their jobs are stable, especially in light of this morning’s news about HHS reorganizations. But also I think this article does a really good job of highlighting how this chaos and instability is only going to exacerbate already ongoing mental health crises that some of these workers that have been laid off were trying to help solve. And so it’s just this cycle that keeps running through. It’s worth remembering. 

Rovner: The chaos is the point. Alice. 

Ollstein: So, I have a piece from the New York Times Wirecutter section called “23andMe Just Filed for Bankruptcy. You Should Delete Your Data Now.” And it’s what it says. The company that millions and millions of people have sent samples of their DNA to over the years to find out what percent European they are and all this stuff and their propensity for various inherited diseases, that company is going bankrupt, and there is the expectation that it will be sold off for parts, including people’s very sensitive DNA. And the article points out that because they are not a health care provider, they are not subject to HIPAA [Health Insurance Portability and Accountability Act]. And so many elected officials and privacy advocates are recommending that people, very quickly, if they have given their DNA to this company, go and delete their information now before it gets sold off to who knows who. 

Rovner: And for who knows what reason. My extra credit this week is something I really did think at first was from The Onion. It’s actually from CNN, and it’s called “State Lawmakers Are Looking to Ban Non-Existent ‘Chemtrails.’ It Could Have Real-Life Side Effects,” by Ramishah Maruf and Brandon Miller, who’s a CNN meteorologist. It seems that several states are moving to ban those white lines the jets leave behind them, on the theory that they are full of toxic chemicals and/or intended to manipulate the weather. In fact, they’re mostly just water vapor. They’re called contrails because the con is for condensation. But these laws could outlaw some new types of technologies that are aimed at addressing things like climate change. Clearly we need to teach more science along with more civics. 

OK, that is this week’s show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcast. We’d appreciate it if you left us a review. That helps other people find us, too. Thanks, as always, to our producer, Francis Ying, and our editor, Emmarie Huetteman. As always, you could email us your comments or questions. We’re at whatthehealth@kff.org. Or you can still find me at X, @jrovner, and at Bluesky, @julierovner. Where are you folks hanging these days? Maya? 

Goldman: I am on X and Bluesky. If you search Maya Goldman, you’ll find me. And also increasingly on LinkedIn. Find me there. 

Rovner: Hearing that a lot. Alice. 

Ollstein: I am on X, @AliceOllstein, and Bluesky, @alicemiranda. 

Rovner: Joanne. 

Kenen: I’m mostly at Bluesky, and I’m also using LinkedIn a lot. @joannekenen at Bluesky. LinkedIn is reverberating more. 

Rovner: All right, we’ll be back in your feed next week with still more breaking news. Until then, be healthy. 

Credits Francis Ying Audio producer Emmarie Huetteman Editor

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HELENA, Mont. — Mark Nay’s first client had lost the van she was living in and was struggling with substance use and medical conditions that had led to multiple emergency room visits.

Nay helped her apply for Medicaid and food assistance and obtain copies of her birth certificate and other identification documents needed to apply for housing assistance. He also advocated for her in the housing process and in the health care system, helping her find a provider and get to appointments.

After a year of “steady engagement,” Nay said, the client has a place to live, is insured, is connected to the health care system, and has the resources needed to “really start to be successful and stable” in her life.

Nay is one of two community health workers in a program that St. Peter’s Health of Helena started in 2022, focusing on people experiencing or at risk of homelessness who had five or more ER visits in a year. Nay and his colleague, Colette Murley, link their clients to services to meet basic needs, whether it’s health care, food, housing, or insurance. The goal is to provide stability and, ultimately, to improve health outcomes.

Similar work is done in hospitals, community health centers, and other settings across Montana by people with titles such as case manager, outreach worker, navigator, and care manager. State Rep. Ed Buttrey, a Great Falls Republican, is sponsoring a bill in Montana’s legislative session to put a common title — community health worker — to the type of work they do and define in law what the role entails. The bill also would provide for licensure and allow, but not require, Medicaid to cover the service.

“Health care is just a very difficult system to navigate, especially when you’re trying to sign up for service and you’re trying to get access to coverage for service,” Buttrey said. “So that’s where I see the biggest benefit.”

Buttrey’s HB 850 is one of several bills still alive this session that are related to Montana’s health care workforce, which is stretched thin throughout the state, the fourth-largest by land area. According to the U.S. Health Resources and Services Administration, more than one-fourth of the state’s residents live in an area with a shortage of primary care health professionals.

Other pending workforce bills include three interstate compact bills, to recognize licenses issued in other states for physician assistants, psychologists, and respiratory therapists. Then there are bills to prohibit noncompete clauses for physicians and some categories of mid-level practitioners. Other measures would allow more unsupervised activities by certain aides and assistants, let nurses provide low-cost home visits to low-income patients, allow licensure of doulas, and let physician assistants and physical therapists be considered “treating physicians” for workers’ compensation purposes.

State Rep. Jodee Etchart, a Billings Republican and a physician assistant, is sponsoring two of the interstate compact licensure bills and one of the bills to limit noncompete clauses.

Etchart termed the compact bills “a no-brainer” because they allow people to get licensed, get a job, and start working in Montana right away.

In 2023, Etchart sponsored successful bills to allow physician assistants to practice without physician supervision and to expand the scope of practice for direct-entry midwives. Those bills, she said, helped pave the way for the progress this year’s workforce bills have made this session.

“It opened a lot of people’s eyes about how we can increase access to health care all over Montana,” she said.

The 2023 bill allowing independent practice by physician assistants drew opposition from physicians, with the Montana Medical Association saying it extended their scope of practice without requiring additional training. This session, the MMA has supported the bills to remove noncompete provisions but opposed bills on expanding the scope of practice for chiropractors and optometrists. MMA CEO Jean Branscum said the group generally believes scope-of-practice changes don’t fix workforce problems if the expanded practice isn’t supported by evidence or training.

Buttrey said this session’s bills to extend unsupervised practice and enact licensure compacts are an acknowledgment of the difficulty that small, rural communities have in attracting doctors. Physician assistants and nurse practitioners have been filling those gaps, he said.

Community health workers fill a different type of gap. They don’t provide direct medical care, instead helping people find the health care and support services they need to become and remain healthy.

Many states have already adopted definitions for community health workers and started providing Medicaid reimbursement for their services.

The requests to add to the list of Medicaid-covered services come at a time when Congress is considering significant budget cuts that could affect the amount of funding the federal government contributes to the Medicaid program. Although the legislature this session continued Montana’s Medicaid expansion program for low-income adults without disabilities, some legislators expressed concern about potential federal changes that could lower the amount of federal funds available for the program.

State Sen. Carl Glimm, a Kila Republican, was one of those legislators. He said he has similar concerns about increasing the types of services covered by Medicaid.

“The more stuff we add,” he said, “the more responsibility the state has” if the federal government shifts more of the program’s costs to the states.

Buttrey’s bill would define a community health worker as a “frontline public health worker” who helps people obtain medical and social services, advocates for their health, and educates individuals, providers, and the community about health care needs. Workers could be licensed after completing training and supervision requirements.

Most medical providers don’t have time to delve into all the outside factors influencing a patient’s health, said Cindy Stergar, CEO of the Montana Primary Care Association, which is supporting Buttrey’s bill. Community health workers can assist with that, she said, adding that research shows people with complex needs become healthier faster when their basic nonmedical needs, such as food and housing, are met.

“At the end of the day, the patient is better,” Stergar said. “That’s first and foremost.”

The Area Health Education Center at Montana State University has been offering community health worker training since 2018, and the University of Montana’s Center for Children, Families and Workforce Development began a training program in 2023. Together, the programs have trained nearly 500 people in how to identify the medical and social factors influencing a person’s health and in strategies for connecting the person with the right community resources.

“Ideally, what community health workers are doing is getting out of the clinic walls, meeting people where they are, and addressing the priorities of the client to get to the root cause of their health conditions and health needs,” said Mackenzie Petersen, project director for the training program at the University of Montana.

Supporters of the community health worker role say the workers are uniquely positioned to observe, understand, and address the barriers preventing a person from getting and staying healthy.

The barriers might be a lack of transportation or insurance or, for a homeless person, the inability to refrigerate a prescribed medication. A community health worker can arrange rides to appointments, help with insurance applications, or make sure a health care provider prescribes a medication that doesn’t need refrigeration.

Murley, with the St. Peter’s Health program, recalled that one of her clients was making frequent trips to the ER with suicidal ideation. Murley learned that he faced bullying in his apartment building and helped him relocate. The ER visits dropped off.

As Nay put it: “It’s really about helping the people that we work with create a path to their 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.

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This story can be republished for free (details).