Carmen Aiken of Chicago made an appointment for an annual physical exam in July 2023, planning to get checked out and complete some blood work.
The appointment was at a family medicine practice run by University of Illinois Health. Aiken said the doctor recommended they undergo a Pap smear, which they hadn't had in more than a year, and testing for sexually transmitted infections. Aiken, who works for a nonprofit and uses the pronoun they, said they were also encouraged to get the HPV vaccine.
They'd tested positive for HPV in 2019 and eventually cleared the virus but had not received the vaccine to prevent future infections.
"Sounds like a good idea," Aiken, 37, recalled telling the doctor.
They also needed some lab work done, part of routine monitoring for one prescription. After being examined, Aiken said, they were directed to a different part of the office building to get blood drawn and receive the first dose of the vaccine before leaving.
Then the bill came.
The Medical Procedure
Services at Aiken's appointment included a pelvic exam, a vaccination, and blood work, checking, in part, glucose levels and liver function.
An annual physical exam typically includes a variety of services, many of which insurers are required to cover under the Affordable Care Act, such as reviewing the patient's health history, screening for high cholesterol, or performing a Pap smear, a procedure to check the cervix for signs of cancer.
Updating immunizations is also a common, covered service at checkups. The vaccine for HPV, or the human papillomavirus, provides protection against an infection that can cause several types of cancer. Federal health officials recommend being immunized for HPV at age 11 or 12, though the vaccine also can be administered later in life.
The Final Bill
$1,430.13: $1,223.22 for lab services and pathology, plus $206.91 for "professional services," which included a charge for a 40-minute "High Mdm" outpatient visit — indicating a high level of "medical decision-making" — as well as charges for immunization administration and vaccines.
The Billing Problem: Diagnostic Blood Work With a Hospital Price Tag
Not all services that may be provided as part of an annual physical are paid for by insurance as preventive care.
A patient who needs blood work for a specific medical concern — as Aiken did, for medication monitoring — could be required to pay part of the bill. That's the case even if the blood work is performed during a checkup alongside preventive services. Some health insurers pay for standard blood work as part of a preventive visit, but that's not always the case.
Aiken had purchased a health insurance plan on the federal marketplace and said they were confident the visit would be covered at no cost to them.
When they got a bill for more than $1,400, Aiken thought, "How did this happen?" They said they called their insurer, BlueCross BlueShield of Illinois, then filed an appeal for the $1,223.22 amount they owed for lab services after their initial inquiry went nowhere. "Surely this is a misunderstanding."
But their insurer sided with UI Health's position that the blood work rendered during the appointment was not preventive. In a letter denying Aiken's appeal, BlueCross BlueShield of Illinois decided that "the labs were billed correctly as diagnostic."
Under the plan's parameters, the insurer determined Aiken remained on the hook for 50% of the cost of outpatient labs performed in a hospital setting.
Dave Van de Walle, a spokesperson for BlueCross BlueShield of Illinois, would not discuss Aiken's bill with KFF Health News.
Francesca Sacco, a spokesperson for UI Health, said in an emailed statement that Aiken scheduled the appointment for "medication monitoring and to obtain a vaccine."
"Medication monitoring is not considered a wellness benefit under the Affordable Care Act," she said.
Sacco also said Aiken's labs were sent for processing to University of Illinois Hospital, more than a mile away from the family medicine practice.
That left Aiken owing more. Hospitals typically charge much more than physicians' offices or independent commercial labs for the same tests.
The distinction between a preventive visit and a diagnostic one is important for billing purposes: It dictates who's on the hook for the bill. A preventive visit generally comes at no cost to patients. But a visit for an ongoing medical issue is usually classified as diagnostic, leaving the patient subject to copays and deductibles — or even charged for two separate appointments.
Patients may not notice a difference in the exam room. Much of that nuance is determined by the medical provider and captured on the bill.
Confusion still persists 15 years after the ACA's preventive services protections took effect, said Sabrina Corlette, a founder and co-director of the Center on Health Insurance Reforms at Georgetown University.
"This is an outrageous bill for what should have been routine care," Corlette said. "People just don't have this kind of money lying around."
The Resolution
After the insurer denied their appeal, they "fell down a hole into despair about it for a while," Aiken said.
"And then someone really wise was like, ‘You can pay it and then just stop thinking about it.'"
So that's what Aiken did: "I put it on my credit card."
UI Health's Sacco said the hospital system is committed to working with insurers to resolve cost-sharing disputes.
"However, it is the insurance company's sole discretion whether a service is fully covered or subject to cost sharing," she said. "In this case, the insurer determined that cost sharing would be applicable to a specific portion of the services provided to the patient. Based on this determination, the patient was billed accordingly by UI Health."
The experience left its mark on Aiken. Last year, they said, they walked out of an urgent-care visit after a doctor recommended a Pap smear — fearing they'd incur another large bill.
Aiken ended up paying the bill by credit card.(Jim Vondruska for KFF Health News)
The Takeaway
Delaying or avoiding care can lead to worse outcomes, which is why lawmakers tried to ensure patients generally would pay nothing for preventive services, such as immunizations, under the ACA.
Annual checkups are a key element of preventive care. For instance, most adults who never received the HPV vaccine do not know they are still eligible, so it's critical to inform them of their options, said Verda Hicks, a gynecologic oncologist based in Kansas City, Missouri.
The vaccine offers protection against nine types of HPV, she said. It also prevents HPV-related cancers in men, so the Centers for Disease Control and Prevention recommends boys receive the immunization, too.
"Get vaccinated," Hicks said. "We just do not have the same tools for many other cancers."
Keep in mind that your coverage may vary — some insurance companies won't cover the cost of the vaccine for some older patients — and the same services may be subject to different cost-sharing rules depending on whether they are conducted for prevention versus diagnosis.
Also, prices can vary depending on where care is delivered and tests are performed. If you need a blood test, ask that your doctor send the requisition to a commercial, in-network lab. Patients may not realize that labs drawn at a clinic may be sent to a hospital for testing, exposing them to greater costs.
There has been a push in Congress to eliminate this price variation through "site-neutral" payment policies. Regardless of location, the price for routine care would be reimbursed at the same amount.
"Site-neutral reforms could potentially have significantly reduced Carmen's expenses," said Christine Monahan, an assistant research professor at Georgetown's Center on Health Insurance Reforms.
Meanwhile, a case before the Supreme Court could upend the health system by eliminating the requirement that insurers cover preventive services like vaccines and annual screenings at no cost to patients. The high court heard oral arguments April 21.
If the justices side with the plaintiffs this term, Georgetown's Corlette said, "then we all potentially lose access to free, high-value preventive care, and that would be a real shame."
Bill of the Month is a crowdsourced investigation by KFF Health News and The Washington Post's Well+Being that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!
For several years, Fred Neary had been seeing five doctors at the Baylor Scott & White Health system, whose 52 hospitals serve central and northern Texas, including Neary's home in Dallas. But in October, his Humana Medicare Advantage plan — an alternative to government-run Medicare — warned that Baylor and the insurer were fighting over a new contract. If they couldn't reach an agreement, he'd have to find new doctors or new health insurance.
"All my medical information is with Baylor Scott & White," said Neary, 87, who retired from a career in financial services. His doctors are a five-minute drive from his house. "After so many years, starting over with that many new doctor relationships didn't feel like an option."
After several anxious weeks, Neary learned Humana and Baylor were parting ways as of this year, and he was forced to choose between the two. Because the breakup happened during the annual fall enrollment period for Medicare Advantage, he was able to pick a new Advantage plan with coverage starting Jan. 1, a day after his Humana plan ended.
Other Advantage members who lose providers are not as lucky. Although disputes between health systems and insurers happen all the time, members are usually locked into their plans for the year and restricted to a network of providers, even if that network shrinks. Unless members qualify for what's called a special enrollment period, switching plans or returning to traditional Medicare is allowed only at year's end, with new coverage starting in January.
But in the past 15 months, the Centers for Medicare & Medicaid Services, which oversees the Medicare Advantage program, has quietly offered roughly three-month special enrollment periods allowing thousands of Advantage members in at least 13 states to change plans. They were also allowed to leave Advantage plans entirely and choose traditional Medicare coverage without penalty, regardless of when they lost their providers. But even when CMS lets Advantage members leave a plan that lost a key provider, insurers can still enroll new members without telling them the network has shrunk.
At least 41 hospital systems have dropped out of 62 Advantage plans serving all or parts of 25 states since July, according to Becker's Hospital Review. Over the past two years, separations between Advantage plans and health systems have tripled, said FTI Consulting, which tracks reports of the disputes.
CMS spokesperson Catherine Howden said it is "a routine occurrence" for the agency to determine that provider network changes trigger a special enrollment period for their members. "It has happened many times in the past, though we have seen an uptick in recent years."
Still, CMS would not identify plans whose members were allowed to disenroll after losing health providers. The agency also would not say whether the plans violated federal provider network rules intended to ensure that Medicare Advantage members have sufficient providers within certain distances and travel times.
The secrecy around when and how Advantage members can escape plans after their doctors and hospitals drop out worries Sen. Ron Wyden of Oregon, the senior Democrat on the Senate Finance Committee, which oversees CMS.
"Seniors enrolled in Medicare Advantage plans deserve to know they can change their plan when their local doctor or hospital exits the plan due to profit-driven business practices," Wyden said.
The increase in insurer-provider breakups isn't surprising, given the growing popularity of Medicare Advantage. The plans attracted about 54% of the 61.2 million people who had both Medicare Parts A and B and were eligible to sign up for Medicare Advantage in 2024, according to KFF, a health information nonprofit that includes KFF Health News.
The plans can offer supplemental benefits unavailable from traditional Medicare because the federal government pays insurers about 20% more per member than traditional Medicare per-member costs, according to the Medicare Payment Advisory Commission, which advises Congress. The extra spending, which some lawmakers call wasteful, will total about $84 billion in 2025, MedPAC estimates. While traditional Medicare does not offer the additional benefits Advantage plans advertise, it does not limit beneficiaries' choice of providers. They can go to any doctor or hospital that accepts Medicare, as nearly all do.
Sanford Health, the largest rural health system in the U.S., serving parts of seven states from South Dakota to Michigan, decided to leave a Humana Medicare Advantage plan last year that covered 15,000 of its patients. "It's not so much about the finances or administrative burden, although those are real concerns," said Nick Olson, Sanford Health's chief financial officer. "The most important thing for us is the fact that coverage denials and prior authorization delays impact the care a patient receives, and that's unacceptable."
The National Association of Insurance Commissioners, representing insurance regulators from every state, Puerto Rico, and the District of Columbia, has appealed to CMS to help Advantage members.
"State regulators in several states are seeing hospitals and crucial provider groups making decisions to no longer contract with any MA plans, which can leave enrollees without ready access to care," the group wrote in September. "Lack of CMS guidance could result in unnecessary financial or medical injury to America's seniors."
The commissioners appealed again last month to Health and Human Services Secretary Robert F. Kennedy Jr. "Significant network changes trigger important rights for beneficiaries, and they should receive clear notice of their rights and have access to counseling to help them make appropriate choices," they wrote.
The insurance commissioners asked CMS to consider offering a special enrollment period for all Advantage members who lose the same major provider, instead of placing the burden on individuals to find help on their own. No matter what time of year, members would be able to change plans or enroll in government-run Medicare.
Advantage members granted this special enrollment period who choose traditional Medicare get a bonus: If they want to purchase a Medigap policy — supplemental insurance that helps cover Medicare's considerable out-of-pocket costs — insurers can't turn them away or charge them more because of preexisting health conditions.
Those potential extra costs have long been a deterrent for people who want to leave Medicare Advantage for traditional Medicare.
"People are being trapped in Medicare Advantage because they can't get a Medigap plan," said Bonnie Burns, a training and policy specialist at California Health Advocates, a nonprofit watchdog that helps seniors navigate Medicare.
Guaranteed access to Medigap coverage is especially important when providers drop out of all Advantage plans. Only four states — Connecticut, Massachusetts, Maine, and New York — offer that guarantee to anyone who wants to reenroll in Medicare.
But some hospital systems, including Great Plains Health in North Platte, Nebraska, are so frustrated by Advantage plans that they won't participate in any of them.
It had the same problems with delays and denials of coverage as other providers, but one incident stands out for CEO Ivan Mitchell: A patient too sick to go home had to stay in the hospital an extra six weeks because her plan wouldn't cover care in a rehabilitation facility.
With traditional Medicare the only option this year for Great Plains Health patients, Nebraska insurance commissioner Eric Dunning asked for a special enrollment period with guaranteed Medigap access for some 1,200 beneficiaries. After six months, CMS agreed.
Once Delaware's insurance commissioner contacted CMS about the Bayhealth medical system dropping out of a Cigna Advantage plan, members received a special enrollment period starting in January.
Maine's congressional delegation pushed for an enrollment period for nearly 4,000 patients of Northern Light Health after the 10-hospital system dropped out of a Humana Advantage plan last year.
"Our constituents have told us that they are anticipating serious challenges, ranging from worries about substantial changes to cost-sharing rates to concerns about maintaining care with current providers," the delegation told CMS.
CMS granted the request to ensure "that MA enrollees have access to medically necessary care," then-CMS Administrator Chiquita Brooks-LaSure wrote to Sen. Angus King (I-Maine).
Minnesota insurance officials appealed to CMS on behalf of some 75,000 members of Aetna, Humana, and UnitedHealthcare Advantage plans after six health systems announced last year they would leave the plans in 2025. So many provider changes caused "tremendous problems," said Kelli Jo Greiner, director of the Minnesota State Health Insurance Assistance Program, known as a SHIP, at the Minnesota Board on Aging. SHIP counselors across the country provide Medicare beneficiaries free help choosing and using Medicare drug and Advantage plans.
Providers serving about 15,000 of Minnesota's Advantage members ultimately agreed to stay in the insurers' networks. CMS decided 14,000 Humana members qualified for a network-change special enrollment period.
The remaining 46,000 people — Aetna and UnitedHealthcare Advantage members — who lost access to four health systems were not eligible for the special enrollment period. CMS decided their plans still had enough other providers to care for them.
In July 2022, "An Arm and a Leg" listener Meagan experienced a bout of vertigo that landed her in the emergency room. For more than two years after, Meagan endured what felt like a never-ending series of communications with the hospital over a medical bill she knew she didn't owe. Meagan spoke with host Dan Weissmann about what kept her motivated to keep fighting and the legal tactic that finally led to a breakthrough.
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.
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 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.
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."
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.
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 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.
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."
They're the fixers, the ones who step in when Affordable Care Act enrollees have a problem with their coverage, like a newborn incorrectly left off a policy or discovering that a rogue broker had signed them up or switched their plan without consent.
Specially trained caseworkers help resolve such issues, which might otherwise cause consumers to rack up large doctors' bills or prevent them or their family members from getting care. Now, though, the broad federal reduction in force set in motion by the Trump administration has cut the ranks of those caseworkers, slashing two out of six divisions of caseworkers, according to one affected worker and a former Centers for Medicare & Medicaid Services official familiar with the situation, Jeffrey Grant.
Currently, the number of ACA enrollees is at an all-time high of 24 million. The ACA — known as Obamacare — has long drawn disfavor from Republicans and Trump himself. The health law faces additional changes next year that, if adopted, could sow confusion and more problems. Consumers would face a new learning curve with extra paperwork and rules. And the caseworker cuts might extend the time needed to resolve any difficulties.
"It impacts not only our jobs, but all these people we serve," said one New York City-based caseworker, who was let go in a Feb. 14 purge affecting federal employees in their probationary periods. "Usually, we would have on average 14 days to take care of a case that was very difficult, although the urgent cases would be solved within two to three business days. It will now be delayed so much more. Whole teams got wiped out completely."
NPR and KFF Health News are not naming the two affected workers in this article because they fear professional or personal repercussions for speaking to the media.
The two teams of caseworkers were dismantled in a haphazard fashion that left some workers without an official notice but locked out of their computers.
The cuts have demoralized caseworkers, whose jobs demand a grasp of complex and arcane health insurance rules in a little-known government department that most consumers don't interact with — CMS' Exchange Customer Solutions Group — until they need help.
"The loss in staffing is going to reduce the ability for people to get through" to caseworkers after contacting the marketplace or other organizations for help, said Jackie Kiger, executive director of Pisgah Legal Services, a nonprofit that provides legal and ACA help for North Carolina consumers and is facing a budget reduction under a separate effort by the Trump administration to cut "navigator" funding by 90%. Navigators are government-funded nonprofits that help people enroll in the ACA or resolve problems with coverage.
The federal force reduction aims to decrease the number of employees at agencies within the Department of Health and Human Services from 82,000 to 62,000, including the Centers for Disease Control and Prevention, the Food and Drug Administration, the National Institutes of Health, and CMS.
CMS, which oversees the ACA and other government health programs, will lose about 300 workers, including about 30 caseworkers scattered nationwide. The cuts come amid thousands of other federal job losses, including front-line workers across an array of agencies, from Social Security field offices to the National Park Service.
In a press release, HHS estimated its reduction in force will save taxpayers $1.8 billion a year. No one from CMS responded to KFF Health News' questions about the caseworker reductions.
What Will Be Affected?
When consumers have a problem with their ACA plan, their first step is usually to call the federal or state marketplace on which they purchased coverage.
Those call centers can handle basic questions about plans purchased on the federal exchange, which serves 31 states. (State marketplaces handle their own complex cases and don't rely on federal caseworkers.)
When someone calls the federal marketplace 800 number with coverage problems, the inquiry probably winds up on a caseworker's desk, said one affected caseworker. That employee received a reduction-in-force notice several days after losing access to their work computer on April 1.
Caseworkers usually don't speak directly with consumers, the worker said. Using information sent over by the federal marketplace — including notes taken when consumers called in with problems, as well as ACA applications — they handle or oversee consumer requests, such as canceling a plan or adding a member.
One of the last problems handled by that caseworker involved a child born in November who was not added correctly to the family's plan for 2024, meaning any care the child received during the last two months of the year was not covered and the family risked being stuck with the bills.
"This person did everything right, including calling the marketplace within 60 days to report the birth and add the newborn to their coverage," said the worker, who was quickly able to resolve it because it was a marketplace error.
The worker, who is now soured on federal employment and will look for a new job in the private sector, said caseworkers handled an average of 30 issues a day, but that in recent months the number kept climbing, heading past 45, and grew even more intense after the Feb. 14 dismissal of probationary employees.
"It's not an easy job," the worker said, noting the challenge of constantly evolving rules and policies governing health plans.
Ferreting Out Fraud
In the past year, caseworkers have dealt with cases involving unauthorized enrollments or switching, a problem that ticked up in late 2023, according to KFF Health News investigations, and continued through much of last year, resulting in at least 274,000 complaints to CMS through August. The complaints centered on practices by rogue brokers who enrolled or switched coverage for consumers without their express knowledge. That could leave them without access to their health provider networks or drug coverage, or even facing a tax bill.
Though it is unclear how many such complaints fell to a federal caseworker, some improperly switched consumers want to be restored into plans they had originally chosen, while others want them canceled.
"I have seen people who were enrolled and every two or three months a broker would switch them to a different plan," said the caseworker who was locked out in early April. "The more health plans they were enrolled in, the more difficult it was to handle on the back end."
New hires spend months learning the ropes.
The New York-based worker let go in February during her probationary period said she had joined CMS in October and spent three months in training. Just about a month after completing that training, she was let go — a bitter irony, she said, because she had sought stability in a job with the federal government, having experienced a layoff during her private-sector career.
"I took a huge pay cut — over $40,000 — when I went from the private sector into the government," said the mother of three whose husband serves in the military. Her federal salary was about $76,000, which is not high for an expensive market like the New York metropolitan area. "But I took it as an opportunity to get in the door and move up. Then, boom, I get hit with another layoff."
"I can only imagine how hard it is for people with 10 to 15 years with the government who are banking on it for retirement," she said.
Starting next year, the Trump administration has proposed several changes to the ACA, including ending year-round eligibility for very low-income applicants, requiring additional financial and eligibility documentation, and charging some people a monthly $5 fee when auto-reenrolled in coverage until they confirm their eligibility.
Such changes will "make things harder, so there you will have more things that go wrong," said Grant, the former CMS official, who founded Schedule F Healthcare Strategies after leaving CMS. "You will then also have fewer caseworkers to handle the work."
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.
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.
"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.
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.
After the Senate voted to confirm Robert F. Kennedy Jr. as Health and Human Services secretary, supporters of his "Make America Healthy Again" movement cheered at having a champion in the federal government.
Now the grumbling has begun. Some of Kennedy's allies say he's become almost inaccessible since his confirmation and complain that he's made glacial progress advancing MAHA goals, such as halting mRNA-based covid shots and removing fluoride from drinking water.
The fractures underscore the clash between Kennedy's movement and President Donald Trump's "Make America Great Again" agenda. Kennedy is pulled between his supporters who want swift action to disrupt traditional health care and Trump, who is focused more on tariffs and increasing deportations than on disease, according to four people close to Kennedy who asked not to be identified because they weren't authorized to speak to the press. Many of the priorities driving Kennedy's MAHA program are not top priorities of his boss.
Kennedy's capacity to navigate those tensions has been further strained by a measles outbreak and the threat of a bird flu pandemic, the people said.
Some of his deputies are still being vetted and other key positions remain unfilled. That, along with resignations of top HHS leaders and sweeping staffing reductions, has created a gap in expertise. Kennedy sometimes calls close informal advisers on the run before meetings, and the crises have put him in a reactionary stance, working on weekends and marshaling staff for Sunday meetings, according to the people.
More churn is coming because of an HHS reorganization set to eliminate about 20,000 jobs, including a 19% cut to the workforce at the FDA, which oversees food, nutrition, and vaccines.
HHS spokespeople didn't respond to emails seeking comment.
To be sure, Kennedy's ascendance represents a breakthrough for the MAHA movement, a broad collection of gadflies, groups, and wellness influencers who extol raw milk, metabolic health, and sustainable farming while lambasting Big Pharma, vaccines, and processed foods.
The coming months will test Kennedy's ability to juggle the challenges and achieve Trump's goals without losing the support of MAHA adherents, especially special interest and advocacy groups that helped him reach his influential perch overseeing one of the nation's largest federal agencies. HHS, with a budget of almost $2 trillion, includes the Centers for Disease Control and Prevention, the National Institutes of Health, and the Centers for Medicare & Medicaid Services.
But the MAHA goals aren't top agenda items for GOP voters, who tend to be focused more on the price of eggs than whether they're organic.
The MAHA faithful "expect action" but their to-do list is not necessarily a high priority for voters or lawmakers, said Robert Blendon, a professor emeritus of health policy and political analysis at Harvard. "And should there be a big measles outbreak or avian flu, it would hurt the White House if there was a big conflict over vaccines going on," he said.
An additional challenge for Kennedy is that not all MAHA and MAGA goals overlap. Trump wants to slash the workforce, which Kennedy has embraced. But fulfilling MAHA wishes will require more regulation, which runs counter to MAGA dogma favoring a smaller federal government.
MAHA wants fluoride out of water because followers say it leads to lower IQ levels in children, as well as arthritis and bone cancer. Kennedy said on X that fluoride is dangerous and that the Trump administration would recommend it be removed from America's drinking water. Fluoridated water is credited for vastly reducing rates of tooth decay in the U.S. In 2015, the CDC called water fluoridation one of the 10 greatest public health achievements of the 20th century, and only 15% of Americans think fluoride is harmful or detrimental to the public, based on a poll in January by market research company Ipsos.
MAHA adherents believe in the debunked claim that vaccines cause autism, and Kennedy just tapped a vaccine opponent to work on a study on possible connections. In fact, HHS has launched an effort that Kennedy said will determine by September what has caused the "autism epidemic." Many autism researchers say this timeline sows doubts about the study's seriousness. Most voters support vaccines and believe in their benefits. Eight in 10 parents with children under age 18 say they normally keep them up to date with recommended childhood vaccines, according to a KFF poll in January.
And MAHA wants to replace seed oils, which the movement's followers claim without evidence are unhealthy, with animal fats such as beef tallow, which is high in saturated fat, which can contribute to high cholesterol and heart disease. Only 13% of Americans believe seed oils are unhealthy to consume, based on a poll by the industry-backed International Food Information Council.
Perhaps no goal is more important to many MAHA followers, however, than banning the mRNA technology behind covid vaccines by Moderna and Pfizer.
"The big threat is that we still have covid-19 vaccines on the market," said Peter McCullough, a former cardiologist who has been criticized for spreading covid misinformation and has informally advised Kennedy. "It's horrendous. I would not hesitate; I would just pull it. What's he waiting for?"
The FDA says covid shots are safe. They are credited for saving millions of lives worldwide during the pandemic, and two NIH-funded scientists who advanced mRNA technology were awarded the Nobel Prize in physiology or medicine in 2023.
Yanking authority for mRNA-based covid vaccines could backfire because Trump sees "Operation Warp Speed," the federal effort to develop the shots, as one of his signature achievements, according to one of the people close to Kennedy. And it would have been impolitic to take action before the confirmation of an FDA commissioner, the person said. Marty Makary, a Johns Hopkins University researcher, was confirmed on March 25 to the post.
Kennedy also isn't calling all the shots. He was initially unaware of the appointment of Gerald Parker, a veterinarian who recently chaired an NIH advisory board, to head the White House's pandemic office, according to one of the people.
Kennedy did choose Susan Monarez, a former deputy director of the Advanced Research Projects Agency for Health, as acting CDC director. Trump nominated her for Senate confirmation to lead the agency on March 24. Kennedy felt she had worked well with Trump's job-cutting Department of Government Efficiency and did a great job in her acting director position, one of the people close to him said.
Kennedy is also in a difficult position regarding Trump's Make America Healthy Again commission, which Kennedy chairs. The panel's charge to investigate and deliver an action plan on the nation's decades-long increase in chronic illness, with a special emphasis on children, is a clear pitch to the MAHA movement. But Trump has told Kennedy, according to one of the people, that he wants to see measurable progress in a year to 18 months — which is hard both to define and to achieve.
While Kennedy is a scion of the country's most famous Democratic family, he is widely distrusted in the medical community because of his fringe views on vaccines and his rejection of established science. Since taking office, he has tried to cultivate relationships with MAGA-leaning state officials, including West Virginia's governor, Republican Patrick Morrisey. And his alliance with Trump is new. When Kennedy was running for president in 2024, Trump took to his Truth Social platform to say, "Kennedy is a Radical Left Democrat, and always will be!!!" — though Trump's administration includes other onetime adversaries such as Secretary of State Marco Rubio.
Many of Kennedy's nutrition and health goals would require regulation, which clash with Trump's anti-regulatory agenda and his focus on a lean federal government.
Meanwhile, he's relied on his principal deputy chief of staff, Stefanie Spear, a longtime Kennedy aide who has taken on the role of traffic cop in the department. He's also leaned on HHS chief of staff Heather Flick Melanson for expertise. She was a senior adviser to former HHS Secretary Alex Azar in Trump's first term.
Kennedy's close circle of informal advisers includes nontraditional doctors, fellow vaccine opponents, media personalities, and self-appointed health gurus. Some have gained unprecedented influence and access to the innermost workings of federal health agencies.
Calley Means, for example, is a Kennedy ally whose business sells wellness products such as saunas and supplements. His statements have dismayed some scientists, such as when he called covid vaccine mandates for children a "war crime" and said without evidence that "metabolically healthy" people don't die from covid. In March, Means joined the White House as a special government employee and MAHA adviser.
Others in Kennedy's orbit include Del Bigtree, a television producer who founded the anti-vaccination group Informed Consent Action Network, and some officials from the previous Trump administration. Aaron Siri, a lawyer for Kennedy, is no longer involved in vetting candidates for HHS positions, one of the people said.
"‘Nontraditional' as a description for these people is not enough. We're talking about beyond the outer fringes of medicine," said Irwin Redlener, senior adviser for the National Center for Disaster Preparedness at Columbia University, of Kennedy's inner circle. "This faux expertise is really dangerous."
Even as some MAHA adherents press for swifter action, Kennedy's recent comments and actions suggest public health ideas once dismissed as fringe or unscientific now have an advocate at HHS.
Kennedy claimed without evidence that cod liver oil is an effective treatment for measles. He's suggested letting the bird flu virus rip unchecked through infected chicken flocks even though scientists say that could unleash dangerous mutations.
And he's backed cellphone bans in schools, saying phones cause cancer in kids. Most studies have found no such link.
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.
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."
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."
