Hospitals have spent years amassing political influence at the federal and state levels. According to the nonprofit OpenSecrets, hospitals and nursing homes’ federal lobbying spending rose from $35 million in 2000 to more than $133 million last year, a 280% increase. 

They recently had a unique opportunity to flex some of that political muscle in Montana, where the state’s Medicaid expansion program was scheduled to expire in June unless legislators and the governor renewed it. 

Conservative lawmakers and groups saw an opportunity to terminate or narrow the Medicaid expansion program that cost about $1 billion in federal and state taxpayer money last year to cover tens of thousands of low-income adults. Ultimately, the conservative Republican lawmakers who occupy state House and Senate leadership positions sought to add requirements to the program or receive concessions from hospitals, such as a promise to bolster their community benefit spending, in return for continuing the program that provides them with revenue. 

What was expected to be one of the more contentious debates of the legislative session never happened. The Medicaid expansion renewal bill sailed through with little difficulty and few changes. 

The hospitals spent the last year working to form a coalition with businesses, health clinics, physician groups, insurers, and advocates for people with low incomes to push for extension of Medicaid expansion, which provides government health coverage to about 74,500 low-income, nondisabled Montanans. That work paid off when Democratic and moderate Republicans lawmakers joined forces to push the bill through. 

Hospital lobbyists, led by the Montana Hospital Association, not only helped steamroll Medicaid expansion through the legislature, but they also defeated nearly all attempts to add new requirements to the program and to place new regulations on the hospitals themselves. 

The hospitals’ political pull is acknowledged by frustrated conservative lawmakers who contend that the facilities, most of which are nonprofit organizations largely exempt from state and federal taxes, need more oversight and transparency. As Republican state Sen. Greg Hertz put it, “Hospitals don’t seem to want to come to the table to discuss anything, whether it’s transparency, controlling costs, or providing more information to the public on services.” 

Hospitals say they’re willing to debate ways to improve health care in Montana. But when it comes to regulations they regard as onerous — or lawmaker criticism that they are uncooperative — they aren’t shy about pushing back. “I think that we’ve demonstrated that we work on all kinds of health policies,” said Montana Hospital Association president and CEO Bob Olsen.

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When the Trump administration cut more than $11 billion in covid-era funds to states in late March, addiction recovery programs suffered swift losses.

An Indiana organization that employs people in recovery to help peers with substance use disorders and mental illness was forced to lay off three workers. A Texas digital support service for people with addiction and mental illness prepared to shutter its 24/7 call line within a week. A Minnesota program focused on addiction in the East African community curtailed its outreach to vulnerable people on the street.

Although the federal assistance was awarded during the covid-19 pandemic and some of the funds supported activities related to infectious disease, a sizable chunk went to programs on mental health and addiction. The latter are both chronic concerns in the U.S. that were exacerbated during the pandemic and continue to affect millions of Americans. Colorado, for example, received more than $30 million for such programs and Minnesota received nearly $28 million, according to health and human services agencies in those states.

In many cases, this money flowed to addiction recovery services, which go beyond traditional treatment to help people with substance use disorders rebuild their lives. These programs do things that insurers often don’t reimburse, such as driving people to medical appointments and court hearings, crafting résumés and training them for new jobs, finding them housing, and helping them build social connections unrelated to drugs.

A federal judge temporarily blocked the Trump administration’s cuts, allowing the programs to continue — for now — receiving federal funding. But many of the affected programs say they can’t easily rehire people they laid off or resurrect services they curtailed. And they’re unsure they can survive long-term amid an environment of uncertainty and fear, not knowing when the judge’s ruling might be lifted or another funding source cut.

The week it slashed the funding, the Trump administration also announced a massive reorganization of the Department of Health and Human Services, including the consolidation of the main federal agency focused on addiction recovery services. Without a stand-alone office like the Substance Abuse and Mental Health Services Administration, many advocates worry, recovery work — and the funding to support it — will no longer be a priority. Although private foundations and state governments may step in, it’s unlikely they could match the tranches of federal funding.

“Recovery support is treated as optional,” said Racquel Garcia, founder of HardBeauty, a Colorado-based addiction recovery organization.

The federal cuts put at risk a roughly $75,000 grant her team had received to care for pregnant women with substance use disorders in two rural counties in Colorado.

“It’s very easy to make sweeping decisions from the top in the name of money, when you don’t have to be the one to tell the mom, ‘We can’t show up today,’” Garcia said. “When you never have to sit in front of the mama who really needed us to be there.”

Mental health conditions, including substance use disorders, are a leading cause of maternal mortality in the U.S. And although national overdose deaths have decreased recently, rates have risen in many Black and Native American communities. Many people in the addiction field worry these funding rollbacks could reverse hard-earned progress.

U.S. Department of Health and Human Services spokesperson Emily Hilliard told KFF Health News that the department is reorganizing to improve efficiency, foster a more coordinated approach to addiction, and prioritize funding projects that align with the president’s Make America Healthy Again initiative.

“We aim to streamline resources and eliminate redundancies, ensuring that essential mental health and substance use disorder services are delivered more effectively,” she said in a statement.

But to Garcia, it doesn’t feel like streamlining. It feels like abandoning moms in need.

Between the time the cuts were announced and when the federal judge paused them, two women served by Garcia’s program gave birth, she said. Though her grant funding was in limbo, Garcia told her employee to show up at the bedside for both moms. The employee followed up with daily check-ins for the new moms, connected them to treatment or housing services when needed, and helped them navigate the child services system.

“I just can’t leave moms” without services, Garcia said. “I just can’t do it.”

Nor can she abandon that employee, she said. Although the federal funding provided half of that employee’s salary, Garcia has continued to keep her on full time.

Garcia said she primarily employs women in recovery, many of whom spent years trapped in abusive situations, relying on welfare benefits. Now they’re sober and have found meaningful work that allows them to provide for their families, she said. “We created our own workforce of mamas who help other mamas.”

This type of recovery workforce development seems to align with the Republican Party’s goals of getting more people to work and reducing reliance on welfare benefits. The Trump administration’s drug policy priorities, released in early April, identified creating “a skilled, recovery-ready workforce” and strengthening peer recovery support services as crucial efforts to help people “find recovery and lead productive, healthy lives.” Many recovery programs train people for blue-collar jobs, which could support Trump’s goal of reviving the manufacturing industry.

But the administration’s actions appear to conflict with its stated goals, said Rahul Gupta, the nation’s drug czar during the Biden administration.

“You can’t have manufacturing if people can’t pass a urine drug test or continue to suffer from addiction or relapse,” said Gupta, who is now president of GATC Health, a company using artificial intelligence for drug development.

Even if jobs return to rural America, cutting funding for recovery services and the main federal office overseeing such efforts could mean fewer people are employable, Gupta said.

Research on recovery programs, particularly those run by people with personal addiction experience, suggests they can increase engagement in court-ordered treatment, reduce the prevalence of rearrest, bolster attendance at treatment appointments, and improve the likelihood of families reunifying and stabilizing.

Billy O’Bryan sees these benefits daily. As a state director for the national nonprofit Young People in Recovery, O’Bryan oversees about a dozen chapters in Kentucky that teach people in recovery life skills, such as balancing a checkbook and interviewing for jobs, and show them how to have fun in sobriety, through group hikes and glow-in-the-dark Ultimate Frisbee games.

Providing recovery services “is when we really invest in their future,” said O’Bryan, who is in recovery too.

Six of his chapters were affected by the federal funding cuts. That has meant dipping into his organization’s rainy day fund to pay staff and cutting back on community events, including cleanup days in which chapter members gather used syringes off the street, pass out the overdose reversal medication naloxone, and talk to people using drugs about the possibility of recovery.

He’s exploring fundraising efforts now, but not all his chapters have the same ability.

“In a city like Louisville, fundraising is not a problem,” O’Bryan said, “but when you get out into Grayson, Kentucky” — a rural area in the Appalachian Mountains — “there’s not a lot of opportunities.”

In Minnesota, Kaleab Woldegiorgis and his colleagues at Niyyah Recovery Initiative used to spend hours a day at soup kitchens, community events, mosques, and on the streets of East African and Muslim neighborhoods, trying to connect with people using drugs. They spoke Somali, Amharic, and Swahili, among other languages.

Those outreach efforts allowed them to “find individuals in need of recovery services” who “weren’t seeking it out themselves,” said Woldegiorgis, who previously attended Niyyah’s support groups when he was dealing with addiction.

After building relationships with people, Woldegiorgis could help them connect with formal recovery services that bill their insurance, he said. But help couldn’t always wait for a contract.

One afternoon shortly before the federal funding cuts, Woldegiorgis and his colleagues spoke with a man who began weeping, recounting how he had wanted to get treatment a few days earlier but had lost his belongings, returned to using drugs, and ended up on the street. Woldegiorgis said he helped the man reconnect with a sister and begin exploring treatment options.

With the federal funding cuts, Niyyah may no longer be able to support this type of outreach work. Woldegiorgis fears it means people won’t receive the message of hope that can come from interacting with role models in recovery.

“People don’t pick up pamphlets to receive these messages. And people don’t read emails and people don’t look at billboards and find inspiration,” he said. “People need people.”

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He’s 17 and lives in the Chicago suburbs. He loves theater and recently helped direct a play at his high school. He takes competitive AP courses and is working on his Eagle Scout project.

And he’s been on a journey for four years.

Once a week, the transgender teen injects testosterone into his body. He’s had his eggs frozen in case he wants to have his own biological children one day. He talked with his parents and his psychologist and decided he was ready for the next step of treatment: top surgery to remove breast tissue.

“Getting this treatment isn’t fixing something that’s wrong with me,” the teen said. “It’s just helping me grow more into who I want to be and who I can feel most comfortable existing as.”

KFF Health News and NPR are not identifying the teen by name or using his mother’s last name because both are concerned he could be targeted for being transgender.

The teen’s mom, Jane, waited for a call to schedule the surgery at Ann & Robert H. Lurie Children’s Hospital of Chicago. Then, she received a voicemail from the hospital. She said she knew what the message would be even before she listened to it: The surgery wouldn’t happen.

She had already read on social media that Lurie Children’s, located near downtown Chicago, would pause gender-affirming surgeries for people younger than 19 in the wake of an executive order from President Donald Trump.

Jane called Lurie back to confirm that surgeries were on hold, then told her son when he got home from school that day.

“I said, ‘Hey, we are going to take care of you,'” she recalled. “‘We will make it through this.'”

It was devastating, Jane said.

“We are being threatened,” she said. “The trans community is being threatened, and parents are being threatened.”

Her son said he feels hurt and confused. His doctors told him after Trump was elected in November that they would fight as hard as they legally could to support him, he recalled. But then Lurie’s leaders decided to cancel pending surgeries and stop scheduling new ones.

“I know that it’s not like a personal thing, like they didn’t look at me directly and go, ‘Yeah, you don’t deserve that,'” the teen said. “But it kind of feels like it sometimes, especially when a lot of what the sentiment has been, in general, towards trans people in society.”

On Feb. 7, a Lurie Children’s spokesperson confirmed the hospital would pause gender-affirming surgeries.

KFF Health News and NPR spoke with 10 patients or their parents in the Chicago area about how this affects their lives. They described their disappointment, their loss of hope for one day having a procedure, and their anger at the timing, when they already feel threatened and marginalized by hateful rhetoric around the country.

These families fear that they eventually could lose access to all gender-affirming care, such as therapy, puberty blockers, and hormones. They’ve also questioned why Illinois officials who have vowed to protect transgender rights have been quiet on what’s happening at Lurie Children’s and elsewhere. Northwestern Memorial Hospital in Chicago has also stopped such surgeries for minors, families told KFF Health News and NPR.

Lurie Children’s decision came after Trump’s executive order on Jan. 28 threatened to cut federal funding to health care providers offering gender-affirming medical care.

“Across the country today, medical professionals are maiming and sterilizing a growing number of impressionable children under the radical and false claim that adults can change a child’s sex through a series of irreversible medical interventions,” according to Trump’s order. “This dangerous trend will be a stain on our Nation’s history, and it must end.”

Another patient, a 16-year-old boy from Chicago, had a surgery date for a double mastectomy procedure — until Lurie Children’s canceled it. KFF Health News and NPR are not identifying him because he fears for his personal safety.

The teen felt betrayed by the cancellation, he said. He has been binding his chest for more than five years, but doing so causes rib and back pain.

Every morning, he faces a choice: bind his chest to fully “pass” as male, or skip that and experience a day without pain. He avoids sports because he can’t breathe as well when his chest is bound. A large part of his gender dysphoria is centered on having breasts, he said.

Lurie Children’s deemed the teen’s surgery “medically necessary,” according to medical documents his family shared with KFF Health News and NPR.

“Lurie’s decision set a precedent not only for other care providers but also for their patients,” said the teen. “They have established that they are no longer the safe haven they have claimed to be for so many years.”

Many of Lurie Children’s patients were referred for surgery to Northwestern Memorial Hospital, a prominent research hospital nearby. Their initial Northwestern appointments were later canceled. A Northwestern spokesperson declined repeated requests to comment.

Parents whose transgender children are receiving other types of medical care at Lurie Children’s, such as hormone therapy, worry about what the hospital might stop providing next.

“If we can’t get estrogen in a year, what do we do?” says the mother of a 15-year-old transgender girl. KFF Health News and NPR are not naming her because she fears retaliation against her daughter if she is identified. “Parents with means are talking about leaving the country.”

The Politics of Pausing Surgeries

In a statement, physician Robert Garofalo said he hears and understands the frustration. He is the founding director of the Gender Development Program at Lurie Children’s.

“My life’s work has been devoted to these children, adolescents, and their families,” Garofalo wrote. “As someone who has spent his entire career at Lurie Children’s, I can assure you these kids and these families matter to this institution. It’s important to know that this decision was painstakingly difficult, and it was made amid unprecedented circumstances and external pressures.”

The hospital’s decision, Garofalo wrote, was based on the belief it could help safeguard most of the clinical services offered by his program.

Surgery among trans youth is rare, researchers have found.

After Trump’s executive order, Illinois Attorney General Kwame Raoul and 14 of his peers in other states vowed to protect access to treatment. In a statement, Raoul said the Illinois Human Rights Act prohibits health care providers from discriminating against patients because of their gender identity.

But recently he told KFF Health News and NPR that it would be hard to make a case that Lurie and Northwestern are violating state law.

“I don’t look at Lurie or Northwestern as a bad actor here,” Raoul, a Democrat, said after an event on April 1, at which he told a packed room of civic leaders in a restaurant near downtown Chicago to stand up against intimidation by the White House. It’s not discrimination, Raoul said, “when the federal government is holding a gun to your head.”

When KFF Health News and NPR asked whether Lurie Children’s is violating the Human Rights Act, Democratic Gov. JB Pritzker didn’t answer. But he did say hospitals are being “blackmailed” into limiting care.

“This is not the hospitals’ fault,” Pritzker said. “Believe me. I know the people at Lurie Children’s Hospital, I know the people who run most of these hospitals, and I can tell you that they want to do the right thing for their patients.”

Lurie Children’s and some hospitals across the country have paused surgeries or other types of gender-affirming treatment despite federal judges who issued rulings blocking Trump’s order.

A Hospital Confronts an Uncertain Legal Future

Lurie Children’s has one of the oldest gender-affirming care programs in the country, launched in 2013, and still offers hormone therapy, puberty blockers, and behavioral health services.

Medical providers, patients, and parents point to research that underscores the crucial and even lifesaving role that transgender medical care can provide, such as helping decrease depression and anxiety. Access to gender-affirming care is supported by the American Academy of Pediatrics and the American Medical Association.

The transgender community is small, and families say they feel targeted because of this. In 2023, around 3% of high school students in the U.S. identified as transgender, and an additional 2% identified as questioning, according to a 2023 study from the federal Centers for Disease Control and Prevention.

Transgender youths experience more violence, bullying, and suicidal thoughts than their non-trans peers, the CDC study found. About 1 in 4 students who were transgender or questioned their gender identity attempted suicide in the past year, the study found.

In recent years, many states have cracked down on access to gender-affirming care for minors, according to KFF, a health information nonprofit that includes KFF Health News. Just over half the country — 27 states — ban or restrict access. Recently, Iowa took the step of stripping civil rights protections from people who are trans or nonbinary.

Elizabeth Mack, a pediatric critical care physician in South Carolina, has witnessed the consequences of a ban in her state. She has treated several children who attempted suicide or died by suicide because they couldn’t access treatment, according to conversations she had with the patients or family members.

“It’s just one of those things that leaves a mark that I can’t unsee,” Mack said of her experience.

This Teen Already Had His Surgery but Still Worries

Ben Garcia, 18, a Chicago high school senior, offers a glimpse into life post-surgery. In 2023, he had a double mastectomy. He believes that without the medical care he’s received for the past several years, he would be a different person, likely more withdrawn and less confident.

“This care has allowed me to be a lot more comfortable in who I am, in the way that I present myself to the world,” Garcia said.

Garcia and his mother, Michelle Vallet, emphasized that his path to surgery was a slow process that proceeded with care and deliberation. Once puberty started, Garcia started to have questions and wanted to explore what it would mean to delay the changes occurring in his body. At that time, he was around 10 or 11 years old.

Vallet reached out to Lurie Children’s Hospital and booked a first appointment for Garcia. It lasted three hours, she said.

Much of the public misunderstands the process, Vallet said, and transgender kids have become some of the most scrutinized patients in America.

“I think they feel like trans kids are just one day waking up saying, ‘I want to be a boy,'” Vallet said. “They go to the gender clinic, wham bam. That’s not how this care happens.”

She, her son, and the medical staff at Lurie Children’s talked through the risks of treatment, the possible side effects, and the next steps.

Garcia went through mental health evaluations over multiple appointments before he could take puberty blockers to stop his body from going through changes. Then he started taking low doses of testosterone, a hormone. Gradually, his voice dropped, and he grew facial hair.

Garcia still takes testosterone shots every week and gets checkups at Lurie Children’s to monitor his hormone levels. He’s now nervous this care could also be affected. His mother is worried that the hospital might suspend all types of gender-affirming care.

“It’s heartbreaking to see hospitals as big as Lurie comply in advance,” Vallet said, referring to the executive order’s threats to cut hospital payments. “It feels like a betrayal. … There’s federal dollars on the line, but at a certain point in the environment we’re in, you have to say, ‘No, I’m not doing this.'”

The suburban 17-year-old who never got a surgery date is waiting to hear back from other hospitals. He has a preliminary appointment booked at one hospital in May, but there’s a waitlist. Surgery is likely months away.

He’s convinced that the medical care he’s already received has saved his life and given him hope for his future. He thinks about studying medicine in college, inspired by the care he’s received.

His mom, Jane, said he’s thriving.

“I’m really proud of him, because he just makes sense,” Jane said as her son described all that’s involved in being able to have surgery. “He makes sense, and people are listening to him make sense and giving him what he needs to exist.”

This article is from a partnership that includes WBEZ, 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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HELENA, Mont. — As Republican legislative leaders in Montana girded for this year’s battle over whether to extend Medicaid expansion in the state, they took aim at one of the program’s biggest backers: hospitals.

If Montana’s hospitals wanted to extend the government health insurance program that cost taxpayers about $1 billion in 2024, and benefit from that revenue, they should give something back, such as additional community health care services and benefits, GOP leaders argued as the session began in January.

But instead, they found out just how formidable a political force the state’s hospitals can be. The hospitals not only helped steamroll Medicaid expansion through the legislature, but they also defeated nearly all attempts to add new requirements to the program and to place new regulations on hospitals themselves.

Hospitals opposed and defeated bills to impose price caps and to prominently post their charges and killed an attempt to redirect Medicaid funds raised by a hospital tax.

Most Montana hospitals are nonprofit organizations that are largely exempt from state income and property taxes. Legislators requested drafts of several bills to scrutinize hospitals’ “community benefits,” the services they provide for free or at discounted costs that justify their nonprofit status, but did not introduce them during the session.

The only such bill introduced has been significantly amended, at the hospitals’ request.

The state hospital lobbyists’ political pull has frustrated conservative lawmakers in leadership positions who are seeking more oversight of and transparency from the hospitals.

“Hospitals don’t seem to want to come to the table to discuss anything, whether it’s transparency, controlling costs, or providing more information to the public on services,” said Republican state Sen. Greg Hertz, who sponsored the price-cap bill that was rejected on the Senate floor this month.

Hospitals say they’re willing to debate ways to improve health care in Montana, and they point to Medicaid expansion as a program whose benefits flow to all corners of the state.

Yet when it comes to regulations they regard as onerous or criticism that they’re uncooperative partners on health care policy, the hospitals aren’t shy about pushing back.

“I don’t think I’ve ever been approached by any of them on reforming the health care system,” Montana Hospital Association president and CEO Bob Olsen said of the hospitals’ critics in the legislature. “I think that we’ve demonstrated that we work on all kinds of health policies.”

Republicans hold big majorities this legislative session and their conservative leaders — most of whom opposed extending Medicaid expansion — have often seen hospitals as a political foe.

But Montana’s hospitals have always been a strong lobby in the state, with bipartisan appeal. The state’s 63 hospitals employ about 30,000 people, according to the MHA, including many of the state’s physicians, and have multiple lobbyists at the Capitol, both on their own and through the hospital association.

They also have a strong ally in state Rep. Ed Buttrey, a moderate Republican who also is on the board of directors of Benefis Health System. Buttrey sponsored the original 2015 Montana Medicaid expansion bill and bills to renew the program in 2019 and this year.

In the past year, hospitals worked to form a coalition with businesses, health clinics, physician groups, insurers, and advocates for people with low incomes to push for extension of Medicaid expansion, which provides government health coverage to about 74,500 low-income, nondisabled Montanans.

Medicaid expansion had been set to expire this June, but the bill extending it breezed through the legislature, passing by comfortable margins in February, with bipartisan support. Republican Gov. Greg Gianforte signed it into law last month.

The MHA has a political action committee that donates to multiple lawmakers of both parties. In 2024, it paid particular attention to allies of Medicaid expansion.

The PAC gave $61,000 to the Montana Democratic Party and $75,000 to a political committee that supported moderate Republicans in contested GOP legislative primaries last June, according to filings with the state commissioner of political practices.

The majorities that passed Medicaid expansion in February included every Democrat in the legislature and many of the moderate Republicans supported by the political committee financed partly by the MHA.

Democrats also have been voting almost universally against bills that would impose new regulations on hospitals.

Hertz’s bill, which would have capped larger hospitals’ prices at 300% of the Medicare rate for most procedures, failed on the Senate floor this month on a 26-24 vote. All but one Democrat and nine Republicans voted against it.

State Sen. Cora Neumann, a Democratic member of the Senate Public Health, Welfare and Safety Committee, also voted against a bill requiring nonprofit hospitals to show that their community benefits meet or exceed the value of their property tax exemptions.

Neumann said she supports better access to affordable care in Montana but that “the policies we have been presented with are not well thought out and raise concerns for me about government overreach.”

State Rep. Jane Gillette, a Republican who chaired the legislative panel overseeing health care spending in the state budget, tried last month to redirect a small portion of Medicaid expansion funds — $7 million a year — to certain hospitals. The money is part of $365 million generated annually by a tax on hospital services, and the corresponding federal match, according to Olsen, the hospital association leader.

Half of the $7 million would go to smaller, independent hospitals and the other half would be distributed to hospitals showing “exceptional health outcomes and efficiencies,” she said.

The House Appropriations Committee agreed March 24 to insert her proposals into the session’s main budget bill.

But a week later — after hospitals lobbied against the change — the same committee torpedoed language in a separate bill that would have implemented the changes. The next day, on the House floor, all but one Democrat and 25 Republicans formed a two-thirds majority to remove the funding change from the budget bill.

“That tells you what a stronghold the hospitals have,” Gillette said. “Even a slight variation to our current system is not acceptable to them.”

Olsen said the change would have taken money from some larger hospitals and moved it elsewhere, and not necessarily to the smaller hospitals Gillette hoped to help.

“She approached us, but never tried to work with us,” he said. “It wasn’t going to reach those hospitals that she wanted to reach.”

Senate President Matt Regier, a Republican, made a last attempt to insert Gillette’s amendment into the state budget bill on the Senate floor on April 17, but it was rejected on a 27-23 vote, with all 18 Democrats and nine Republicans voting no.

Hospitals are, however, working with Regier on his community-benefit reporting measure — the last-standing bill that might impose new regulations on hospitals.

The bill says if the community benefits reported by nonprofit hospitals don’t equal or exceed the value of their exemption from property taxes, they must pay the difference into a fund that would be distributed to small, “critical access” hospitals.

During the bill’s initial hearing April 2, Regier — a Medicaid expansion opponent and sometimes sharp critic of the hospitals — said he was open to amendments that hospitals might find acceptable.

The original bill cleared the Senate April 5 on a party-line, 30-18 vote, with Republicans in favor. Then, in a House committee meeting on April 17, Republicans attached amendments that had the hospitals’ blessing and sent the bill to the House floor.

The changes delay the law’s effective date until 2027 and more specifically define the community benefits that must be reported and the potential property tax liability to which hospitals must match their benefit.

Olsen said the MHA will support the amended bill.

“The truth of it is, hospitals have always far exceeded the tax exemption for community benefits, on the spending they do,” he said. “Some might fall short, from time to time — but over the long haul, they exceed those exemptions.”

Regier’s attempt to quantify the amount and compare it to nonprofit hospitals’ tax exemption is not unreasonable, Olsen said: “I’m confident hospitals can do it.”

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The assisted living facility in Edina, Minnesota, where Jean Peters and her siblings moved their mother in 2011, looked lovely. “But then you start uncovering things,” Peters said.

Her mother, Jackie Hourigan, widowed and developing memory problems at 82, too often was still in bed when her children came to see her midmorning.

“She wasn’t being toileted, so her pants would be soaked,” said Peters, 69, a retired nurse-practitioner in Bloomington, Minnesota. “They didn’t give her water. They didn’t get her up for meals.” Her mother dwindled to 94 pounds.

Most ominously, Peters said, “we noticed bruises on her arm that we couldn’t account for.” Complaints to administrators — in person, by phone, and by email — brought “tons of excuses.”

So Peters bought an inexpensive camera at Best Buy. She and her sisters installed it atop the refrigerator in her mother’s apartment, worrying that the facility might evict her if the staff noticed it.

Monitoring from an app on their phones, the family saw Hourigan going hours without being changed. They saw and heard an aide loudly berating her and handling her roughly as she helped her dress.

They watched as another aide awakened her for breakfast and left the room even though Hourigan was unable to open the heavy apartment door and go to the dining room. “It was traumatic to learn that we were right,” Peters said.

After filing a police report and a lawsuit, and after her mother’s 2014 death, Peters in 2016 helped found Elder Voice Advocates, which lobbied for a state law permitting cameras in residents’ rooms in nursing homes and assisted living facilities. Minnesota passed it in 2019.

Though they remain a contentious subject, cameras in care facilities are gaining ground. By 2020, eight states had joined Minnesota in enacting laws allowing them, according to the National Consumer Voice for Quality Long-Term Care: Illinois, Kansas, Louisiana, Missouri, New Mexico, Oklahoma, Texas, and Washington.

The legislative pace has picked up since, with nine more states enacting laws: Connecticut, North Dakota, South Dakota, Nevada, Ohio, Rhode Island, Utah, Virginia, and Wyoming. Legislation is pending in several others.

California and Maryland have adopted guidelines, not laws. The state governments in New Jersey and Wisconsin will lend cameras to families concerned about loved ones’ safety.

But bills have also gone down to defeat, most recently in Arizona. For the second year, a camera bill passed the House of Representatives overwhelmingly but, in March, failed to get a floor vote in the state Senate.

“My temperature is a little high right now,” said state Rep. Quang Nguyen, a Republican who is the bill’s primary sponsor and plans to reintroduce it. He blamed opposition from industry groups, which in Arizona included LeadingAge, which represents nonprofit aging services providers, for the bill’s failure to pass.

The American Health Care Association, whose members are mostly for-profit long-term care providers, doesn’t take a national position on cameras. But its local affiliate also opposed the bill.

“These people voting no should be called out in public and told, ‘You don’t care about the elderly population,’” Nguyen said.

A few camera laws cover only nursing homes, but the majority include assisted living facilities. Most mandate that the resident (and roommates, if any) provide written consent. Some call for signs alerting staffers and visitors that their interactions may be recorded.

The laws often prohibit tampering with cameras or retaliating against residents who use them, and include “some talk about who has access to the footage and whether it can be used in litigation,” added Lori Smetanka, executive director of the National Consumer Voice.

It’s unclear how seriously facilities take these laws. Several relatives interviewed for this article reported that administrators told them cameras weren’t permitted, then never mentioned the issue again. Cameras placed in the room remained.

Why the legislative surge? During the covid-19 pandemic, families were locked out of facilities for months, Smetanka pointed out. “People want eyes on their loved ones.”

Changes in technology probably also contributed, as Americans became more familiar and comfortable with video chatting and virtual assistants. Cameras have become nearly ubiquitous — in public spaces, in workplaces, in police cars and on officers’ uniforms, in people’s pockets.

Initially, the push for cameras reflected fears about loved ones’ safety. Kari Shaw’s family, for instance, had already been victimized by a trusted home care nurse who stole her mother’s prescribed pain medications.

So when Shaw, who lives in San Diego, and her sisters moved their mother into assisted living in Maple Grove, Minnesota, they immediately installed a motion-activated camera in her apartment.

Their mother, 91, has severe physical disabilities and uses a wheelchair. “Why wait for something to happen?” Shaw said.

In particular, “people with dementia are at high risk,” added Eilon Caspi, a gerontologist and researcher of elder mistreatment. “And they may not be capable of reporting incidents or recalling details.”

More recently, however, families are using cameras simply to stay in touch.

Anne Swardson, who lives in Virginia and in France, uses an Echo Show, an Alexa-enabled device by Amazon, for video visits with her mother, 96, in memory care in Fort Collins, Colorado. “She’s incapable of touching any buttons, but this screen just comes on,” Swardson said.

Art Siegel and his brothers were struggling to talk to their mother, who, at 101, is in assisted living in Florida; her portable phone frequently died because she forgot to charge it. “It was worrying,” said Siegel, who lives in San Francisco and had to call the facility and ask the staff to check on her.

Now, with an old-fashioned phone installed next to her favorite chair and a camera trained on the chair, they know when she’s available to talk.

As the debate over cameras continues, a central question remains unanswered: Do they bolster the quality of care? “There’s zero research cited to back up these bills,” said Clara Berridge, a gerontologist at the University of Washington who studies technology in elder care.

“Do cameras actually deter abuse and neglect? Does it cause a facility to change its policies or improve?”

Both camera opponents and supporters cite concerns about residents’ privacy and dignity in a setting where they are being helped to wash, dress, and use the bathroom.

“Consider, too, the importance of ensuring privacy during visits related to spiritual, legal, financial, or other personal issues,” Lisa Sanders, a spokesperson for LeadingAge, said in a statement.

Though cameras can be turned off, it’s probably impractical to expect residents or a stretched-thin staff to do so.

Moreover, surveillance can treat those staff members as “suspects who have to be deterred from bad behavior,” Berridge said. She has seen facilities installing cameras in all residents’ rooms: “Everyone is living under surveillance. Is that what we want for our elders and our future selves?”

Ultimately, experts said, even when cameras detect problems, they can’t substitute for improved care that would prevent them — an effort that will require engagement from families, better staffing, training and monitoring by facilities, and more active federal and state oversight.

“I think of cameras as a symptom, not a solution,” Berridge said. “It’s a band-aid that can distract from the harder problem of how we provide quality long-term care.”

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

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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.

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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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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.

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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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.

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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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.”

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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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.”

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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