On the eastern plains of Colorado, in a county of less than 6,000 people, Lincoln Health runs the only hospital within a 75-minute drive. The facility struggles financially, given its small size and the area's tiny population.
But for over a decade, the Hugo, Colorado-based health system has remained afloat partially thanks to a surprising source: special taxes on the state's hospitals.
The taxes Lincoln pays help cover the state's Medicaid costs and — because the federal government matches a portion of what states spend on Medicaid — enable Colorado to claim more federal money. That generally leads to more dollars for the hospital. The tax proceeds also have helped Colorado expand Medicaid under the Affordable Care Act to cover 400,000 more low-income adults, significantly reducing the number of people showing up at hospital doors without insurance.
Last year, Lincoln paid $500,000 in provider taxes but netted more than $3.6 million extra from Medicaid, accounting for about 15% of its budget, said Lincoln CEO Kevin Stansbury.
"These dollars allow me to care for patients who are enrolled in Medicaid and to break even rather than lose money," he said. "Without them, it would significantly impact our ability to survive."
But Republicans who control Congress are looking for potential cuts in the nearly $900 billion Medicaid program to help fund an extension of President Donald Trump's tax cuts — and have sought to portray provider taxes as malicious, sometimes even deriding them as "money laundering." Lawmakers say they may curtail or eliminate provider taxes as part of legislation to enact Trump's domestic agenda.
"It's infuriating," Stansbury said.
Medicaid and the closely related Children's Health Insurance Program together cover roughly 79 million low-income and disabled people and are jointly financed by states and the federal government.
Federal dollars match state payments with no limit. While the split varies based on a state's per capita income, the federal match ranges from 50% to 77% for children, pregnant women, and people with disabilities, who make up most of the enrollment.
States started using provider taxes in the 1980s to help pay their share and gain additional Medicaid funds from the federal government.
Brian Blase, a former Trump health policy adviser who leads the conservative Paragon Health Institute, sees provider taxes as one of the highest forms of waste in Medicaid. States and their hospitals, nursing homes, and other providers aren't held accountable for how the tax money is used, reducing incentives for states to control Medicaid spending, he said.
"This has been a feature of the program for four decades, and it is a feature that is getting worse," Blase said.
The Congressional Budget Office estimates eliminating provider taxes would save the federal government more than $600 billion over a decade.
Rep. Brett Guthrie (R-Ky.), who chairs the House committee that oversees Medicaid, has said provider taxes are on the menu for potential cuts.
Other changes Republicans are considering to cut federal Medicaid spending include requiring adult enrollees to prove they're working as a condition of eligibility, as well as ending higher payments for adults enrolled as part of the Affordable Care Act's expansion of the program.
Since 2014, more than 20 million nondisabled adults in 40 states and Washington, D.C., have gained coverage under the expansion.
House Republicans have set a Memorial Day deadline to come to an agreement on spending cuts, which would help pay for extending about $4 trillion in tax cuts passed during Trump's first administration and set to expire at the end of this year.
But opposition from hospitals, nursing homes, and states snuffed out any move to limit or end the arrangements.
Colorado and other states often use the money to maintain or increase payments to providers, which are often paid less by Medicaid than by Medicare, the federal program primarily for people 65 or older, or private insurers.
States have added provider taxes to help generate federal money to cope with economic downturns and budget constraints.
Hospitals in Idaho last year began paying an additional provider tax to increase pay to hospitals and home- and community-based providers. The tax came as Idaho's Republican-controlled legislature sought to add many conditions that threatened to end the state's Medicaid expansion — which would also eliminate a key source of increased federal funding.
Brian Whitlock, president and CEO of the Idaho Hospital Association, said funding from the hospital tax helps boost Medicaid payments to about 80% of Medicare's rates instead of 60%.
"We still lose money on every Medicare and Medicaid patient," he said. "The state recognizes that this money helps offset the losses we take under Medicaid reimbursement."
While hospitals and nursing homes have been the main beneficiaries of provider tax proceeds, ambulance services have also paid and benefited from Medicaid taxes. States increasingly have also approved Medicaid taxes on private insurers that operate their Medicaid programs to gain more federal funds.
California's Medicaid managed care tax began in 2009 and is expected to generate nearly $9 billion in net revenue for the 2024-25 fiscal period — or about 5% of the state's Medicaid budget, according to the California Legislative Analyst's Office.
In recent years, California has extended full Medicaid coverage to immigrants lacking permanent legal status. Federal law prohibits federal Medicaid dollars from being used to cover people in the country without authorization, but states can use their own money.
At a presentation to congressional staffers in April, Blase cited California's strategy as an example of provider tax abuse and claimed the state is effectively laundering federal funds to cover people living in the U.S. without authorization.
In practice, the tax has been a kind of fiscal pressure valve generally offsetting state spending. A ballot measure that passed in November now requires that much of the money from California's tax specifically be used to increase Medicaid reimbursement to doctors, hospitals, and other providers.
Hospital officials and state Medicaid leaders argue the term "money laundering" is an inaccurate way to describe provider taxes, since they are allowed by federal law. But Blase said calling the levies a "tax" is misleading, pointing out that most businesses don't typically advocate to pay one.
Jamie Whitney, chief legal officer for Texas-based Adelanto HealthCare Ventures, a consulting firm, said that provider taxes are a politically neutral way to help states pay for Medicaid and that curtailing their use would harm them all. "This is not a red-state, blue-state issue," she said.
Colorado is one of more than a dozen states that have funded an ACA Medicaid expansion using provider tax money. Others include Arkansas, Louisiana, Missouri, North Carolina, Ohio, and Virginia.
Colorado implemented its Medicaid provider tax effort in 2009. In the 2024 fiscal year, about $5 billion of the state's $15 billion Medicaid program was funded by provider taxes, according to the state.
The money helps the state pay higher Medicaid reimbursements to hospitals, which reduces their need to charge higher rates to private insurers, said Kim Bimestefer, executive director of the Colorado Department of Health Care Policy and Financing, which oversees Medicaid.
Some of the extra payments are dependent on hospitals meeting certain quality and patient-safety metrics, such as reducing readmission rates after patients are discharged — a requirement state officials say improves care for everyone.
The provider taxes also fund a program allowing working residents with disabilities to buy into Medicaid coverage even if their income is as high as 300% of the federal poverty level, or $46,950 for an individual. About 20,000 people are enrolled in the program.
Among them is Alison Sbrana, 31, of Fort Collins, Colorado, who has a type of chronic fatigue syndrome and relies on Medicaid to cover long-term home care.
"It would be devastating if the benefit went away," said Sbrana, who works as a researcher and activist for those with the same disorder. "I would be forced to stop working to keep my income low enough to qualify."
The state's provider taxes also pay for a $60 million fund to support rural hospitals, helping them add telehealth services, recruit surgeons, and hire paramedics, according to a state report.
Konnie Martin, CEO of San Luis Valley Health, a two-hospital system based in Alamosa, Colorado, said her nonprofit paid $5.4 million in provider taxes last year and gained about $15 million in benefits from higher Medicaid payments and the rural grants.
She said the money helps her hospital maintain obstetrical services, so residents don't have to drive 120 miles to the nearest maternity hospital. Without the birthing center, the entire region would suffer, she said.
"It also would gut the economy of the community, because young people will move away," she said.
KFF Health News senior correspondent Bernard Wolfson contributed to this report.
People who work in real-life emergency rooms have raved about how the new TV drama "The Pitt" accurately captures the complex dynamics of their workplaces and the medical details of their cases.
Host Dan Weissmann talks with Alex Janke, an emergency medicine doctor and health policy researcher, about how the show stacks up against his experiences in the ER. They also discuss its depictions of the financial forces that shape day-to-day problems inside ERs.
Sumana Reddy, a primary care physician, struggles on thin financial margins to run Acacia Family Medical Group, the small independent practice she founded 27 years ago in Salinas, a predominantly Latino city in an agricultural valley often called "the salad bowl of the world."
Reddy can't match the salaries offered by larger health systems — a difficulty compounded by a widespread shortage of primary care doctors.
The shortage is tied largely to the lower pay and relative lack of prestige associated with primary care, making recruitment difficult. "It certainly is challenging to expose medical students early in their careers to the joys of this kind of integrated health care," Reddy said. "The relationships we build and the care we provide truly allow people to live longer with a better quality of life."
Hoping to increase revenue so Acacia can afford to pay more, Reddy has signed the practice up for alternative payment methods with health plans that offer bonuses for meeting certain primary care goals tied to child vaccinations, blood pressure control, and screenings for breast cancer, colorectal cancer, and mental health. Such pay-for-performance arrangements are among the many efforts by industry players and state officials to confront the problems plaguing primary care.
Medical students frequently opt not to go into primary care, and that's not good for patients. People with regular primary care providers are more likely to get preventive care that avoids serious illnesses and feel more empowered to advocate for themselves. They're also less likely to encounter language barriers, resort to costly emergency room visits, or forgo care.
Six years after the influential California Future Health Workforce Commission made a series of recommendations to plug a projected shortage of 4,100 primary care providers in 2030, a number of public and private initiatives have proliferated around the state to address the problem. They include new residency slots, debt forgiveness, waived medical school tuition, new ways of paying doctors, expanded nurse practitioner roles, and a statewide target to increase primary care spending. Hundreds of millions of taxpayer dollars have been allocated for some of these efforts.
But numerous academic experts and medical professionals believe those moves, while well intended, have been scattershot and insufficient. "The pieces are there," said Monica Soni, chief medical officer of Covered California, the state's Affordable Care Act health insurance marketplace. "I am worried we started a little too late, and I think it's a little too siloed."
A study published in 2022 by the California Health Care Foundation found that substantial progress had been made on some of those goals, including recruitment of students from low-income households and communities of color. A separate analysis from the foundation showed that, from 2020 to 2023, California jumped about 10 spots in a ranking of states by primary care residents and fellows per capita.
However, the latest state data shows nearly 15 million Californians live in areas without enough primary care providers to meet patient needs.
State budget constraints and potential federal spending cuts, especially to Medicaid, could exacerbate shortages in areas already desperate for clinicians and dampen hopes of building a robust primary care system that state officials and virtually everyone in the industry agree would be a strong defense against serious — and costly — illnesses. Federal cuts could also hit medical training and hospital systems.
"Many of us are very scared about threats from both the Trump administration and Republicans in Congress," said Kevin Grumbach, a family community medicine professor at the University of California-San Francisco.
California's lack of primary care providers, including doctors, nurse practitioners, and physician assistants, is most acute in rural parts of the state, particularly in the north and the Central Valley. Entire rural counties, including Del Norte, Madera, Tulare, and Yuba, are designated shortage areas, according to state data. Some densely populated urban areas, including parts of Los Angeles, also confront shortages.
Many Californians face months-long waits for appointments or have to travel long distances or go to emergency rooms for nonurgent medical needs, which means hours spent in crowded waiting rooms for unnecessarily expensive care.
In Chico, 90 miles north of Sacramento, the emergency room at the only hospital in town has seen a sharp increase in patients over the past decade, due in part to a lack of primary care providers in the area.
"People who don't have a primary care provider — which is a lot, because there are not enough — end up in the ER when they need routine care," said David Alonso, a local internal medicine doctor. "The ER then says, ‘OK, you should follow up with your primary care provider,' and they're like, ‘We don't have one.'"
Yalda Jabbarpour, director of the Robert Graham Center for Policy Studies, a health policy think tank, said failure to invest robustly in primary care has robbed the public of its benefits.
The field has historically been underfunded, accounting for less than 5% of national health care spending in 2022, according to the Milbank Memorial Fund, a national nonprofit focused on population health and health equity.
The Consequences Are Clear.
The U.S. spends significantly more per capita on health care than other industrialized nations, and yet Americans aren't any healthier. Chronic conditions such as heart disease, diabetes, arthritis, and Alzheimer's, as well as mental illness, account for 90% of the $4.5 trillion spent on health care every year.
Medical students, often faced with staggering educational debt, are increasingly choosing higher-paid specialties over primary care. The average salary of a family medicine physician is slightly over $300,000, compared with more than $565,000 for a cardiologist and over $763,000 for a neurosurgeon, according to one study.
"If you are going to pay over $300,000 to go to medical school, you want to be a neurosurgeon; you don't want to be a family practice doctor," said William Barcellona, executive vice president of government affairs at America's Physician Groups, a Los Angeles-based professional association representing 360 medical groups and independent practice associations nationwide.
Barcellona said the Golden State's high housing costs also make recruiting difficult.
But it's not only pay that tempers enthusiasm for primary care. It's also burnout from so many unpaid hours spent recording details of medical visits in electronic health records; haggling with insurance companies for treatment authorization; answering phone calls and emails from patients; or searching far and wide — often in a health care desert — for specialists with the right expertise.
Debby Lee, the daughter of Hmong immigrants from Laos, experienced this kind of frustration firsthand.
Cultural and linguistic barriers faced by her family motivated her to pursue internal medicine. Lee worked part of her residency at a community clinic serving Hmong in the Sacramento area. She loved the patients, as well as her co-workers. But she was burdened by outdated technology that limited the number of patients she could see. "I just saw myself kind of burning out being in that setting," Lee said.
When the clinic invited her to stay, she declined, taking a job with a bigger health system.
Solutions to the Shortage
Besides residencies, other efforts support primary care.
The Health Plan of San Mateo offers grants to help medical practices retain and add to primary care staff. In exchange, the practices — some single physicians serving patients in California's Medicaid program, Medi-Cal — must show they have increased their patient load and retained newly hired providers for five years.
The idea is to provide capital so doctors can hire the staff they need to run their practices efficiently, increase salaries, offer bonuses, and even take sabbaticals. Such efforts are consistent with one of the main thrusts of the 2019 workforce report: to increase investment in primary care.
California recently joined several other states, including Connecticut, Oklahoma, and Rhode Island, in setting a target to increase primary care spending. So far, those policies have yielded mixed results.
Late last year, California's Office of Health Care Affordability set a target to make primary care account for 15% of total health care spending by 2034, more than double the current proportion. It imposes no requirements, relying on the goodwill of health plans to work with medical providers.
Greater spending on primary care would mean better pay and more people working in the field, said Richard Kronick, a public health professor at UC-San Diego and a member of the OHCA board. "That's a big change. Will it happen? I don't think anyone can predict the future with any certainty."
Stephen Shortell, a professor emeritus of health policy and management at UC-Berkeley, said "some of that increase might occur, but at some point, it might need to be made mandatory."
In its report, the workforce commission also cited the importance of alternative forms of primary care payment that offer extra cash for quality care. The affordability office has set targets to encourage such payment methods. The aim is to transform the system from one in which every medical service has a price tag to one that treats people holistically, and in which adherence to medical standards brings more money to doctors and their office staff.
Such arrangements are common among HMOs, though less so in primary care practices. Where they do exist, different health plans and other payers generally design them differently, which means primary care practices manage multiple payment models, adding to their administrative burden.
Reddy's family practice is participating in a one-year demonstration project launched in January intended to reduce that burden by having multiple insurers work together in one payment plan.
The project brings together three large insurers — Health Net, Aetna, and Blue Shield of California — and 10 independent practices across the state with the goal of improving care while boosting revenue for the medical groups. It is administered by two industry groups, the Integrated Healthcare Association and the California Quality Collaborative.
On top of customary payments, either for services rendered or monthly per-member allotments, the medical practices receive bonuses for meeting targets or improving their performance on core measures.
Participating practices also receive monthly per-patient payments for "population health management," which means managing the collective health of their patients. And they can search a single platform to find all their patients covered by one of the three plans.
In addition to extra payments and fewer administrative hassles, the health plans pay for a "practice coach," whose job is to help primary care groups meet their targets and provide more seamless care.
The idea is to add more insurers and medical groups over time, said Todd May, Health Net's medical director for commercial health plans, who is among those driving the project. "In addition to better outcomes, we'd like to see a stronger, more robust, and more satisfied primary care workforce," he said.
Reddy hopes she can increase Acacia's revenue by 20%, using the extra money from this and other pay-for-performance arrangements. That, she said, would enable her to raise pay for her staff and hire clinicians.
For many years, her practice has limited the number of patients it has accepted. But after searching for the better part of five years, Reddy has hired a doctor on a half-time basis and another is coming on board in June.
"This is the most hopeful I have felt in decades," Reddy said.
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.
