When Lawrence and Penny Higgins of Fairfield, Maine, first learned in 2020 that high levels of toxic chemicals called PFAS taint their home’s well water, they wondered how their health might suffer. They had consumed the water for decades, given it to their pets and farm animals, and used it to irrigate their vegetable garden and fruit trees.

“We wanted to find out just what it’s going to do to us,” Penny Higgins said. They contacted a couple of doctors, but “we were met with a brick wall. Nobody knew anything.”

Worse still, she added, they “really didn’t want to hear about it.”

Many clinicians remain unaware of the health risks linked to PFAS, short for perfluoroalkyl and polyfluoroalkyl substances, despite rising medical and public awareness of the chemicals and their toxicity. PFAS can affect nearly every organ system and linger in bodies for decades, raising risks of cancer, immune deficiencies, and pregnancy complications.

These “forever chemicals” have been widely used since the 1950s in products including cosmetics, cookware, clothing, carpeting, food packaging, and firefighting foam. Researchers say they permeate water systems and soils nationwide, with a federal study estimating that at least 45% of U.S. tap water is contaminated. PFAS can be detected in the blood of nearly all Americans, according to the Centers for Disease Control and Prevention.

Maine was among the first states to begin extensive water and soil testing and to try to limit further public exposure to PFAS through policy action, after discovering that farms and residences — like the Higgins’ property — had been contaminated by land-spreading of wastewater sludge containing PFAS. Exposure can also be high for people living near military bases, fire training areas, landfills, or manufacturing facilities.

In regions where testing reveals PFAS hot spots, medical providers can be caught flat-footed and patients left adrift.

Rachel Criswell, a family practice doctor and environmental health researcher, is working to change that. She was completing her residency in Central Maine around the time that the Higginses and others there began discovering the extent of the contamination. Her medical training at Columbia University included more than a year in Norway researching the effects of PFAS and other chemicals on maternal and infant health.

When patients began asking about PFAS, Criswell and the state toxicologist offered primary care providers lunchtime presentations on how to respond. Since then, she has fielded frequent PFAS questions from doctors and patients throughout the state.

Even knowledgeable providers can find it challenging to stay current given rapidly evolving scientific information and few established protocols. “The work I do is exhausting and time-consuming and sometimes frustrating,” Criswell said, “but it’s exactly what I should be doing.”

Phil Brown, a Northeastern University sociology professor and a co-director of the PFAS Project Lab, said the medical community “doesn’t know a lot about occupational and environmental health,” adding that “it’s a very minimal part of the medical school curriculum” and continuing education.

Courtney Carignan, an environmental epidemiologist at Michigan State University, said learning of PFAS exposure, whether from their drinking water or occupational sources, “is a sensitive and upsetting situation for people” and “it’s helpful if their doctors can take it seriously.”

Clinical guidance concerning PFAS improved after the National Academies of Sciences, Engineering, and Medicine released a report on PFAS in 2022. It found strong evidence associating PFAS with kidney cancer, high cholesterol, reduced birth weights, and lower antibody responses to vaccines, and some evidence linking PFAS to breast and testicular cancer, ulcerative colitis, thyroid and liver dysfunction, and pregnancy-induced hypertension.

That guidance “revolutionized my practice,” Criswell said. “Instead of being this hand-wavey thing where we don’t know how to apply the research, it brought a degree of concreteness to PFAS exposure that was kind of missing before.”

The national academies affirmed what Criswell had already been recommending: Doctors should order blood tests for patients with known PFAS exposures.

Testing for PFAS in blood — and for related medical conditions if needed — can help ease patients’ anxiety.

“There isn’t a day that goes by,” Lawrence Higgins said, “that we don’t think and wonder when our bodies are going to shut down on us.”

‘Devastating but Incredibly Helpful’

After finding out in 2021 that his family was exposed to PFAS through sludge spread on their Unity, Maine, farm decades earlier, Adam Nordell discovered that “it was exceedingly difficult” to get tested. “Our family doctor had not heard of PFAS and didn’t know what the test was,” he said. A lab technician needed coaching from an outside expert to source the test. The lab analyzing the samples had a backlog that left the family waiting three months.

“The results were devastating but incredibly helpful,” Nordell said. Their blood serum levels for PFAS were at roughly the 99th percentile nationally, far higher than their well-water levels would have predicted — indicating that additional exposure was probably coming from other sources such as soil contact, dust, and food.

Blood levels of PFAS between 2 and 20 nanograms per milliliter may be problematic, the national academies reported. In highly contaminated settings, blood levels can run upward of 150 times the 20-ng/mL risk threshold.

Nordell and his family had been planning to remain on the farm and grow crops less affected by PFAS, but the test results persuaded them to leave. “Knowledge is power,” Nordell said, and having the blood data “gave us agency.”

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The national academies’ guidance paved the way for more clinicians to order PFAS blood tests. The cost, typically $400 to $600, can be prohibitive if not picked up by insurance, and not all insurers cover the testing. Deductibles and copays can also limit patients’ capacity to get tested. Less costly finger-prick tests, administered at home, appear to capture some of the more commonly found PFAS as accurately as blood serum tests, Carignan and colleagues found.

Maine legislators recently passed, with overwhelming support, a bill — modeled after one in New Hampshire — that would require insurers to consider PFAS blood testing part of preventive care, but it was carried over to the next legislative session.

“In my mind, it’s a no-brainer that the PFAS blood serum test should be universally offered — at no cost to the patient,” said Nordell, who now works as a campaign manager for the nonprofit Defend Our Health. Early screening for the diseases associated with PFAS, he said, is “a humane policy that’s in the best interests of everyone involved” — patients, providers, and insurance companies.

Criswell tells colleagues in family practice that they can view elevated PFAS blood levels as a risk factor, akin to smoking. “What’s challenging as a primary care doctor is the nitty-gritty” of the testing and screening logistics, she said.

In trainings, she shares a handout summarizing the national academies’ guidance — including associated heath conditions, blood testing, clinical follow-up, and exposure reduction — to which she has added details about lab test order codes, insurance costs and coverage, and water filtration.

Criswell served on an advisory committee tasked with allocating $60 million in state funds to address PFAS contamination from past sludge-spreading in Maine. The group recommended that labs analyzing PFAS blood tests should report the results to state public health authorities.

That change, slated to take effect this summer, will allow Maine health officials to follow up with people who have high PFAS blood levels to better determine potential sources and to share information on health risks and medical screening. As with many earlier PFAS policies, Maine is among the first states to adopt this measure.

Screening for PFAS is falling short in many places nationwide, said Kyle Horton, an internist in Wilmington, North Carolina, and founder of the nonprofit On Your Side Health. She estimates that only about 1 in 100 people facing high PFAS exposure are getting adequate medical guidance.

Even in her highly contaminated community, “I’m not aware of anyone who is routinely screening or discussing PFAS mitigation with their patients,” Horton said. Knowledge of local PFAS threats, she added, “hasn’t translated over to folks managing patients differently or trying to get through to that next phase of medical monitoring.”

Patients as Advocates

In heavily affected communities — including in Michigan, Maine, and Massachusetts — patients are pushing the medical field to better understand PFAS.

More doctors are speaking out as well. Testifying before a Maine legislative committee this year in support of a bill that would limit occupational PFAS exposure, Criswell said, “We, as physicians, who are sworn to protect the health of our patients, must pay attention to the underlying causes of the illnesses we treat and stand up for policy solutions that reduce these causes.”

Even where policy changes are instituted, the physical and psychological toll of “forever chemicals” will extend far into the future. Criswell and other Maine doctors have observed chronic stress among patients.

Nordell, the former farmer, described his family’s contamination as “deeply, deeply jarring,” an ordeal that has at times left him “unmoored from a sense of security.”

To assess the mental health consequences of PFAS exposure in rural residents, Criswell and Abby Fleisch, a pediatric endocrinologist at the MaineHealth Institute for Research, teamed up on a study. In its first phase, winding up this summer, they collected blood samples and detailed lifestyle information from 147 people.

Nordell, the Higginses, and other Central Maine residents sit on an advisory board for the study, a step Criswell said was critical to ensuring that their research helps those most affected by PFAS.

“The urgency from the community is really needed,” she said. “I don’t think I would be as fired up if my patients weren’t such good advocates.”

Criswell has faced what she calls “cognitive dissonance,” caught between the deliberate pace of peer-reviewed medical research and the immediate needs of patients eager to lower their PFAS body burden. Initially she considered inviting residents to participate in a clinical trial to test therapies that are considered safe and may help reduce PFAS levels in the body, such as high-fiber diets and a drug designed to reduce cholesterol called cholestyramine. But the clinical trial process could take years.

Criswell and Fleisch are instead planning to produce a case series on PFAS blood-level changes in patients taking cholestyramine. “We can validate the research results and share those,” Criswell said, potentially helping other patients.

Alan Ducatman, an internist and occupational physician who helped design the largest PFAS cohort study to date, said providers should convey that “there is no risk-benefit analysis” for any of the current treatments, although they’re generally well known and low-risk.

“Some people want to be treated, and they should be allowed to be treated,” he said, because knowing they have high PFAS levels in their bodies “preys on them.”

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

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“Almost 5 million able-bodied Medicaid recipients ‘simply choose not to work’ and ‘spend six hours a day socializing and watching television.’”

Scott Jennings on “CNN NewsNight with Abby Phillip” on July 1

Republicans defended the GOP megabill’s Medicaid changes as targeting a group of people they believe shouldn’t qualify: people who can work but instead choose to stay home and chill.

Several Republican politicians and pundits, including CNN senior political commentator Scott Jennings, pegged that group’s size at about 5 million people.

“There are like almost 5 million able-bodied people on Medicaid who simply choose not to work,” Jennings said July 1 on “CNN NewsNight with Abby Phillip.” “They spend six hours a day socializing and watching television. And if you can’t get off grandma’s couch and work, I don’t want to pay for your welfare.”

Centers for Medicare & Medicaid Services Administrator Mehmet Oz picked up on some of these points during a July 14 appearance on Fox News. “When the program was created 60 years ago, it never dawned on anyone that you would take able-bodied individuals who could work and put them on Medicaid. Today the average able-bodied person on Medicaid who doesn’t work, they watch 6.1 hours of television or just hang out,” Oz said.

Medicaid is a federal-state health insurance program that covers medical care for lower-income people.

Jennings cited two pieces of data: an estimate of how many fewer people would have coverage because of the work requirement and an analysis of how nonworking Medicaid recipients spend their time. But he made assumptions that the data doesn’t support.

Jennings Misrepresents CBO Estimate

The 4.8 million figure stems from a June 24 Congressional Budget Office analysis of a preliminary House version of the massive tax and spending package. The office, Congress’ nonpartisan research arm, projected that provisions of the bill would cause 7.8 million fewer people to have health coverage by 2034. They would include 4.8 million people previously eligible for Medicaid described as “able-bodied” adults 19 to 64 years old who have no dependents and who “do not meet the community engagement requirement” of doing “work-related activities” at least 80 hours a month.

Apart from working, doing community service and attending school also fulfill the community engagement requirement.

Jennings paired that statistic with a separate analysis of how nondisabled adult Medicaid recipients without dependent children spend their time.

But the CBO estimate was a projection — it doesn’t represent the current number of nondisabled Medicaid recipients, nor does it say 4.8 million people in this group “choose not to work.” The figure represented how many fewer people would have coverage because of the bill’s community engagement requirement.

“The challenge with Jennings’ comments — and they’ve been echoed elsewhere by elected Republicans — is that CBO never said that 4.8 million people were out of compliance with the proposed work requirements; they said that 4.8 million people would lose coverage because of the work requirements,” said Adrianna McIntyre, an assistant professor of health policy and politics at the Harvard T.H. Chan School of Public Health.

Among the Medicaid expansion population, the law requires most adults without dependent children and parents of children older than 13 to work or participate in other qualifying activities 80 hours every month. States will need to verify that applicants met the work requirement for one to three months before they applied. States will also be required to verify that existing enrollees met the work requirement for at least a month between eligibility determinations, which will be required at least twice a year.

Research into Medicaid work requirements imposed at the state level has shown that people found it difficult to fulfill them and submit documentation, contributing to coverage losses.

In Arkansas, which added a work requirement to Medicaid in 2018, a study based on nearly 6,000 respondents found that about 95% of the target population were already working or qualified for an exemption, but a third of them did not hear about the work requirements. As a result, nearly 17,000 Medicaid recipients subject to work requirements lost coverage.

KFF found that adults ages 50 to 64 are more at risk of losing Medicaid coverage because of the new work requirements. More than 1 in 10 in that age group said they had retired, and among them, 28% reported being disabled, said KFF, a health information nonprofit that includes KFF Health News.

Benjamin Sommers, a health care economics professor at the Harvard Chan school, said many of the 4.8 million “able-bodied” people in the CBO estimate “will actually be engaged in the activities they are supposed to be doing, and lose coverage because they are not able to navigate the reporting requirements with the state and lose coverage from red tape.”

When Recipients Don’t Work, It’s Rarely From Lack of Interest

There is no universal definition for “able-bodied”; disability can be assessed in different ways. But other studies offer much smaller estimates than 4.8 million Medicaid recipients without dependents who can work but choose not to.

Millions of working-age, nondisabled adults joined the Medicaid ranks in states that expanded eligibility under the Affordable Care Act. There were about 34 million working-age nondisabled Medicaid enrollees in 2024, according to the CBO, 15 million of whom enrolled through the ACA.

A KFF analysis found a smaller figure of 26 million Medicaid-covered adults, ages 19 to 64, who don’t receive Supplemental Security Income, Social Security Disability Insurance, or Medicare benefits.

Among this group, KFF estimated, 64% were working either full time or part time. The reasons the rest were not working included caregiving (12%); illness or disability (10%); retirement, inability to find work, or other reason (8%); and school attendance (7%).

Few people cited lack of interest in working as the reason for their unemployment. An Urban Institute study found 2% of Medicaid expansion enrollees without dependents who neither worked nor attended school — or 300,000 people out of a projected 15 million subject to work requirements — cited a lack of interest in working as the reason they were unemployed.

This was consistent with the Brookings Institution’s June 5 analysis that found that, of 4.3 million adult enrollees who worked fewer than 80 hours a month and did not have any activity limitations or illnesses, about 300,000 reported that they “did not work because they did not want to.”

Mostly Women, Mostly With a High School Degree or Less

When Republicans have described nondisabled adult Medicaid recipients, they have often portrayed them as men in their 30s “playing video games” in their parents’ basement or who “smoke weed all day.” Research paints a different picture.

Jane Tavares and Marc Cohen, of the University of Massachusetts-Boston Gerontology Department, researched Medicaid recipients who are not disabled or working, have no dependent children under 18, and are not in school. They cited 2023 census data from the American Community Survey.

They found:

• The average age of this population is 41, and 26% are older than 50.
• Almost 80% are female.
• Most, 80%, have a high school education or less.
• Their median individual income is $0, and their median household income is $44,800.
• About 56% worked in the past five years, and 23% worked in the prior year. About 30% are looking or available for work.

“They are not healthy young adults just hanging out,” the authors, along with health law experts Sara Rosenbaum and Alison Barkoff, wrote April 30.

“It’s clear based on their prior work history and family size/income that they are exceptionally poor and have likely left the workforce to care for adult children or older adults,” Tavares told PolitiFact. “Even if these individuals could work, they would have very few job opportunities and it would come at the cost of the people they are providing care for.”

AEI Study Not Definitively Linked to CBO Estimate

On the social platform X, Jennings posted the CBO letter and a May 29 analysis by the American Enterprise Institute, a conservative think tank, about “how nondisabled Medicaid recipients without children spend their time.” PolitiFact contacted CNN to reach Jennings but did not receive a reply.

The author of that study, American Enterprise Institute senior fellow Kevin Corinth, analyzed survey data and found that Medicaid recipients who do not report working spend on average 6.1 hours a day “on all socializing, relaxing and leisure activities (including television and video games).”

But it’s uncertain whether the people in the survey population he analyzed overlap with the people included in the CBO analysis, said Jennifer Tolbert, deputy director of KFF’s Program on Medicaid and the Uninsured.

Corinth told PolitiFact “it is difficult to say” how the population he analyzed differs from the CBO’s. Tavares, Cohen, Rosenbaum, and Barkoff said Corinth’s dataset defined disability narrowly, leading to a “serious underestimation of disability” among the population of Medicaid recipients he looked into. It focused on Medicaid recipients who receive Supplemental Security Income or have a health condition that prevents them from working. The researchers said this approach is too narrow because the SSI program accounts for only those “most deeply impoverished adults with severe disabilities.”

The group gave a hypothetical example of a 54-year-old woman with a serious heart condition who can work only a few hours a week. She may not be considered disabled under the SSI program, but she may be limited in the work she can do and may need time to rest.

“Using her ‘leisure time’ to justify a work requirement grossly misrepresents her reality,” the group wrote.

Corinth’s analysis also shows that nonworking Medicaid recipients spend less time socializing, relaxing, or engaged in leisure activities than nonworking people who aren’t covered by Medicaid. Nonworking Medicaid recipients also spend more time looking for work and doing housework and errands, it found.

Our Ruling

Jennings said almost 5 million nondisabled Medicaid recipients “simply choose not to work” and “spend six hours a day socializing and watching television.”

The 5 million figure stems from a CBO projection that 4.8 million people would go without coverage by 2034 as a result of not fulfilling the community engagement requirements. It is not descriptive of current enrollees and does not specify that these people choose not to work.

Jennings cited an American Enterprise Institute analysis on how nondisabled Medicaid recipients with no dependents spend their time, but it is uncertain if the population in that analysis overlaps with that in the CBO estimate.

Current snapshots of the population Jennings described produce a smaller number. A survey by the Urban Institute found that 2% of Medicaid expansion enrollees without dependents who were neither working nor attending school — about 300,000 people — cited a lack of interest in working. Other research has found reasons this group doesn’t work include caregiving, illness or disability, retirement, and inability to find work.

Studies of nonworking Medicaid recipients have found the majority are women and have a high school education or less. Their average age is 41, and more than half have a work history in the past five years.

We rate Jennings’ statement False.

Our Sources

Email interview, Jane Tavares, University of Massachusetts-Boston adjunct instructor in gerontology, July 2, 2025

Email interview, Marc Cohen, University of Massachusetts-Boston professor of gerontology, July 2, 2025

Email interview, Sara Rosenbaum, George Washington University Milken Institute School of Public Health professor emerita of health law and policy, July 2, 2025

Email interview, Alison Barkoff, George Washington University Milken Institute School of Public Health associate professor of health law and policy, July 2, 2025

Email interview, Edwin Park, Georgetown University McCourt School of Public Policy Center for Children and Families research professor, July 2, 2025

Email interview, Benjamin Sommers, Harvard T.H. Chan School of Public Health professor of health care economics, July 2, 2025

Phone interview, Jennifer Tolbert, deputy director of KFF’s Program on Medicaid and the Uninsured, July 2, 2025

Email interview, Adrianna McIntyre, Harvard T.H. Chan School of Public Health assistant professor of health policy and politics, July 2, 2025

Phone interview, Michael Karpman, Urban Institute Health Policy Division principal research associate, July 3, 2025

Email exchange, Congressional Budget Office spokesperson, July 2, 2025

Email interview, Kevin Corinth, American Enterprise Institute senior fellow, July 3, 2025

X post by Rapid Response 47, June 30, 2025

Transcript of “CNN NewsNight with Abby Phillip,” July 1, 2025

Congressional Budget Office, “Re: Information Concerning Medicaid-Related Provisions in Title IV of H.R. 1,” June 24, 2025

Benjamin D. Sommers, M.D., Ph.D., Anna L. Goldman, M.D., M.P.A., M.P.H., Robert J. Blendon, Sc.D., E. John Orav, Ph.D., and Arnold M. Epstein, M.D., “Medicaid Work Requirements — Results From the First Year in Arkansas,” June 19, 2019

Congressional Budget Office, Baseline Projections, Medicaid, June 2024

KFF, “Understanding the Intersection of Medicaid and Work: An Update,” May 30, 2025

Urban Institute, “Many Working People Would Be Shut Out of Medicaid Under Proposed Work Requirements,” June 11, 2025

Wisconsin Watch, “Have Millions of Nondisabled, Working-Age Adults Been Added to Medicaid?” July 2, 2025

CBS News, “Too Sick To Work, Some Americans Worry Trump’s Bill Will Strip Their Health Insurance,” June 26, 2025

Brookings Institution, “Any Way You Look at It You Lose: Medicaid Work Requirements Will Either Fall Short of Anticipating Savings or Harm Vulnerable Beneficiaries,” June 5, 2025

X post by Scott Jennings, July 2, 2025

American Enterprise Institute, “How Nondisabled Medicaid Recipients Without Children Spend Their Time,” May 29, 2025

Congressional Budget Office, “Estimated Budgetary Effects of an Amendment in the Nature of a Substitute to H.R. 1, the One Big Beautiful Bill Act, Relative to CBO’s January 2025 Baseline,” June 29, 2025

Geiger Gibson Program in Community Health, George Washington University Milken Institute School of Public Health, “The Fundamental Flaw in ‘How Workers Spend Their Time’,” June 4, 2025

X post by Aaron Rupar, July 1, 2025

X post by Congressman Brandon Gill, July 2, 2025

LeadingAge LTSS Center @UMass Boston, “Profile of Medicaid Population Age 18-64, Working and Non-Working Medicaid Beneficiaries, and ‘Able-Bodied’ Non-Working Medicaid Beneficiaries,” May 2025

The Milbank Quarterly, “Who’s Affected by Medicaid Work Requirements? It’s Not Who You Think,” April 30, 2025

KFF, “Different Data Source, but Same Results: Most Adults Subject to Medicaid Work Requirements Are Working or Face Barriers to Work,” June 25, 2025

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

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Every time Ashton Alexander sees an ad for Georgia Pathways to Coverage, it feels like a “kick in the face.”

Alexander tried signing up for Pathways, the state’s limited Medicaid expansion, multiple times and got denied each time, he said, even though he met the qualifying terms because he’s a full-time student.

Georgia is one of 10 states that haven’t expanded Medicaid health coverage to a broader pool of low-income adults. Instead, it offers coverage to those who can prove they’re working or completing 80 hours a month of other qualifying activities, like going to school or volunteering. And it is the only state currently doing so.

“Why is this marketing out here?” said the 20-year-old, who lives in Conyers, east of Atlanta. “It’s truly not accessible.”

Each denial used the same boilerplate language, Alexander said, and his calls to caseworkers were not returned. State offices couldn’t connect him with caseworkers assigned to him from the same state agency. And when he requested contact information for a supervisor to appeal his denial, he said, the number rang to a fax machine.

“It’s impenetrable,” Alexander said. “I’ve literally tried everything, and there’s no way.”

Millions of Americans trying to access Medicaid benefits could soon find themselves navigating similar byzantine state systems and work rules. Legislation signed into law by President Donald Trump on July 4 allocates $200 million to help states that expanded Medicaid create systems by the end of next year to verify whether some enrollees are meeting the requirements.

Conservative lawmakers have long argued that public benefits should go only to those actively working to get off of government assistance. But the nation’s only Medicaid work requirement program shows they can be costly for states to run, frustrating for enrollees to navigate, and disruptive to other public benefit systems. Georgia’s budget for marketing is nearly as much as it has spent on health benefits. Meanwhile, most enrollees under age 65 are already working or have a barrier that prevents them from doing so.

What Georgia shows is “just how costly setting up these administrative systems of red tape can be,” said Joan Alker, executive director of Georgetown University’s Center for Children and Families.

Over the past two years, KFF Health News has documented the issues riddling Georgia’s Pathways program, launched in July 2023. More than 100,000 Georgians have applied to the program through March. Just over 8,000 were enrolled at the end of June, though about 300,000 would be eligible if the state fully expanded Medicaid under the terms of the Affordable Care Act.

The program has cost more than $100 million, with only $26 million spent on health benefits and more than $20 million allocated to marketing contracts, according to a KFF Health News analysis of state reports.

“That was truly a pretty shocking waste of taxpayer dollars,” Alker said.

The Government Accountability Office is investigating the costs of the program after a group of Democratic senators — including both members of the Georgia delegation — asked the government watchdog to look into the program. Findings are expected this fall.

A state report to the federal government from March said Georgia couldn’t effectively determine if applicants meet the qualifying activities criteria. The report also said the state hadn’t suspended anyone for failing to work, a key philosophical pillar of the program. Meanwhile, as of March, more than 5,000 people were waiting to have their eligibility verified for Pathways.

The Pathways program has strained Georgia’s eligibility system for other public benefits, such as food stamps and cash assistance.

In April, the state applied to the federal government to renew Pathways. In its application, officials scaled back key elements, such as the requirement that enrollees document work every month. Critics of the program also say the red tape doesn’t help enrollees find jobs.

“Georgia’s experience shows that administrative complexity is the primary outcome, not job readiness,” said Natalie Crawford, executive director of Georgia First, which advocates for fiscal responsibility and access to affordable health care.

Despite the struggles, Garrison Douglas, a spokesperson for Georgia’s Republican governor, Brian Kemp, defended the program. “Georgia Pathways is doing what it was designed to do: provide free healthcare coverage to low-income, able-bodied Georgians who are willing to engage in one of our many qualifying activities,” he said in an emailed statement.

New federal requirements in the tax and spending legislation mean that the 40 states (plus Washington, D.C.) that expanded Medicaid will need to prepare technology to process the documentation some Medicaid recipients will now have to regularly file.

The federal law includes exemptions for people with disabilities, in addiction treatment, or caring for kids under 14, among others.

The Trump administration said other states won’t face a bumpy rollout like Georgia’s.

“We are fully confident that technology already exists that could enable all parties involved to implement work and community engagement requirements,” said Mehmet Oz, head of the Centers for Medicare & Medicaid Services, in an emailed statement.

In a written public comment on Georgia’s application to extend the program, Yvonne Taylor of Austell detailed the difficulties she faced trying to enroll.

She said she tried to sign up several times but that her application was not accepted. “Not once, not twice,  but 3 times. With no response from customer service,” she wrote in February. “So now I am without coverage.”

Victoria Helmly of Marietta wrote in a January comment that she and her family members take care of their dad, but the state law doesn’t exempt caregivers of older adults.

“Georgia should recognize their sacrifices by supporting them with health insurance,” she wrote. “Let’s simplify this system and in the end, save money and lives.”

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

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Last year in Massachusetts, after finding lumps in her breast, Jessica Chen went to Lowell General Hospital-Saints Campus, part of Tufts Medicine, for a mammogram and sonogram. Before the screenings, she asked the hospital for the estimated patient responsibility for the bill using her insurance, Tufts Health Plan. Her portion, she was told, would be $359 — and she paid it. She was more than a little surprised weeks later to receive a bill asking her to pay an additional $1,677.51. “I was already trying to stomach $359, and this was many times higher,” Chen, a physician assistant, told me.

The No Surprises Act, which took effect in 2022, was rightly heralded as a landmark piece of legislation, which “protects people covered under group and individual health plans from receiving surprise medical bills,” according to the Centers for Medicare & Medicaid Services. And yet bills that take patients like Chen by surprise just keep coming.

With the help of her software-wise boyfriend, she found the complicated “machine-readable” master price list that hospitals are required to post online and looked up the negotiated rate between Lowell General and her insurer. It was $302.56 — less than she had paid out-of-pocket.

CMS is charged with enforcing the law, so Chen sent a complaint about the surprising bill to the agency. She received a terse email in return: “We have reviewed your complaint and have determined that the rights and protections of the No Surprises Act do not apply.”

When I asked the health system to explain how such a surprising off-estimate bill could be generated, Tufts Medicine spokesperson Jeremy Lechan responded by email: “Healthcare billing is complex and includes various factors and data points, so actual charges for care provided may differ from initial estimates. We understand the frustration these discrepancies can cause.”

Here’s the problem: While the No Surprises Act has been a phenomenal success in taking on some unfair practices in the wild West of medical billing, it was hardly a panacea.

In fact, the measure protected patients primarily from only one particularly egregious type of surprise bill that had become increasingly common before the law’s enactment: When patients unknowingly got out-of-network care at an in-network facility, or when they had no choice but to get out-of-network care in an emergency. In either case, before President Donald Trump signed the law late in his first term, patients could be hit with tens or hundreds of thousands of dollars in out-of-network bills that their insurance wouldn’t pay.

The No Surprises Act also provided some protection from above-estimate bills, but at the moment, the protection is only for uninsured and self-pay patients, so it wouldn’t apply in Chen’s case since she was using health insurance.

But patients who do qualify generally are entitled to an up-front, good-faith estimate for treatment they schedule at least three business days in advance or if they request one. Patients can dispute a bill if it is more than $400 over the estimate. (The No Surprises Act also required what amounted to a good-faith estimate of out-of-pocket costs for patients with insurance, but that provision has not been implemented, since, nearly five years later, the government still has not issued rules about exactly what form it should take.)

So, surprising medical bills — bills that the patient could not have anticipated and never consented to — are still stunning countless Americans.

Jessica Robbins, who works in product development in Chicago, was certainly surprised when, out of the blue, she was recently billed $3,300 by Endeavor Health for a breast MRI she had received two years earlier, with prior authorization from her then-insurer, Blue Cross and Blue Shield of Illinois. In trying to resolve the problem, she found herself caught in a Kafkaesque circle involving dozens of calls and emails. The clinic where she had the procedure no longer existed, having been bought by Endeavor. And she no longer had Blue Cross.

“We are actively working with the patient and their insurer to resolve this matter,” Endeavor spokesperson Allie Burke said in an emailed response to my questions.

Mary Ann Bonita of Fresno, California, was starting school this year to become a nursing assistant when, on a Friday, she received a positive skin test for tuberculosis. Her school’s administration said she couldn’t return to class until she had a negative chest X-ray. When her doctor from Kaiser Permanente didn’t answer requests to order the test for several days, Bonita went to an emergency room and paid $595 up front for the X-ray, which showed no TB. So she and her husband were surprised to receive another bill, for $1,039, a month later, “with no explanation of what it was for,” said Joel Pickford, Bonita’s husband.

In the cases above, each patient questioned an expensive, unexpected medical charge that came as a shock — only to find that the No Surprises Act didn’t apply.

“There are many billing problems out there that are surprising but are not technically surprise bills,” Zack Cooper, an associate professor of economics at Yale University, told me. The No Surprises Act fixed a specific kind of charge, he said, “and that’s great. But, of course, we need to address others.”

Cooper’s research has found that before the No Surprises Act was passed, more than 25% of emergency room visits yielded a surprise out-of-network bill.

CMS’ official No Surprises Help Desk has received tens of thousands of complaints, which it investigates, said Catherine Howden, a CMS spokesperson. “While some billing practices, such as delayed bills, are not currently regulated” by the No Surprises Act, Howden said, complaint trends nonetheless help “inform potential areas for future improvements.” And they are needed.

Michelle Rodio, a teacher in Lakewood, Ohio, had a lingering cough weeks after a bout of pneumonia that required treatment with a course of antibiotics. She went to Cleveland Clinic’s Lakewood Family Health Center for an examination. Her X-ray was fine. As was her nasal swab — except for the stunning $2,700 bill it generated.

“I said, ‘This is a surprise bill!’” Rodio recalled telling the provider’s finance office. The agent said it was not.

“So I said, ‘Next time I’ll be sure to ask the doctor for an estimate when I get a nose swab.’”

“The doctors wouldn’t know that,” the agent replied, as Rodio recalled — and indeed physicians generally have no idea how much the tests they order will cost. And in any case, Rodio was not legally entitled to a binding estimate, since the part of the No Surprises Act that grants patients with insurance that right has not been implemented yet.

So she was stuck with a bill of $471 (the patient responsibility portion of the $2,700 charge) that she couldn’t have consented to (or rejected) in advance. It was surprising — shocking to her, even — but not a “surprise bill,” according to the current law. But shouldn’t it be?

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

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In response to the high price of prescription drugs, “An Arm and a Leg” asked listeners to share their strategies for getting the medicine they need at prices they can manage.

Host Dan Weissmann and producers Emily Pisacreta and Claire Davenport share tips from a retired hospital manager who now helps seniors find the right Medicare plans, a pharmaceutical sales rep, an employee benefits adviser, and a battle-worn hospital caseworker. Each brings surprising, maybe even lifesaving, information to the table.

Explore the full crowdsourced series, including five installments of the “First Aid Kit” newsletter: The Prescription Drug Playbook.

Dan Weissmann @danweissmann Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting. Credits Emily Pisacreta Producer Claire Davenport Producer Adam Raymonda Audio wizard Ellen Weiss Editor Click to open the Transcript Transcript: The Prescription Drug Playbook, Part II

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there. Let’s meet Jeanne Chamberlin from North Carolina. She regularly talks with folks who take like 15 different meds every day. 

Jeanne Chamberlin: You are like, oh my gosh. And literally the retail costs are $20,000 a month. 

Dan: Jeanne’s an expert, twice over. Since retiring from a career managing hospitals and medical groups, she’s been helping her fellow seniors figure out how to manage what they pay for health care — as a county-level volunteer coordinator for a program called SHIP. 

Jeanne: And SHIP stands for Seniors Health Insurance Information Program. 

Dan: Actually in some cases it stands for State Health Insurance Assistance Program. 

Whatever you wanna call it — It’s a federally funded program that helps seniors with all things Medicare. Every state has its own version of SHIP. 

During the busy season — that’s in the fall, when people can pick new insurance for the coming year– Jeanne says she and her team speak to more than a hundred people a week. 

And one thing that comes up in basically ALL of those conversations: Can I change things to get my meds for less next year? 

She says one year, her team added up the impact of those conversations. Half of the people changed plans, and on average, they saved 300 dollars. Not bad… 

Jeanne: But there were many, many people who saved a thousand, 2000, even $10,000 by changing from one Medicare plan to another based entirely on the cost of their drugs. 

Dan: Jeanne’s gonna tell us how she helps people get those kinds of savings– with strategies that aren’t just for people on Medicare. 

And Jeanne is just one person who wrote to us when we asked for you, our listeners, to tell us about your tactics and tricks for dealing with the high cost of prescription drugs.

The result: two podcast episodes– this is number two — and four installments of our First Aid Kit newsletter. 

In this episode, we’re gonna hear from Jeanne and three other *incredible* sources who came to us with crucial insider knowledge. Knowledge that — now they we have it– we have to share with you. 

Jeanne’s gonna help us get set up. She’s gonna share what she tells those seniors, and how it can apply to anyone, at any age. 

… Then, a pharma insider is gonna air an open secret. 

An employee benefits advisor — a kind of scout for deals — will tell us where she’d send someone struggling to pay for meds. 

Finally, we’ll meet a battle-worn hospital caseworker. And beyond the specific tip she wrote in with, her work – and life story – are gonna bring us some deeper perspective. 

These people kick ass. 

And for all their advice, there is, of course, a BIG caveat: 

like we said last episode — your mileage will vary. There is no one solution for everyone. This is a set of patches, workarounds, bandaids. 

To be honest, a lot of them are actually weird byproducts of the profit-making machine. Which is a big reason they’re so patchy and unreliable. 

We deserve SO much better. But in the meantime, we can help each other. That’s what this project is about. Including the four newsletter installments I mentioned. And we’ll link to those from wherever you’re listening — so: you don’t need a pencil and paper here. We’ve got you. 

Our hope is that you walk away from all of this armed with a *little* more knowledge that could help you or someone you care about get the meds they need. A kind of leg up. An Arm and a Leg-leg-up. 

This is An Arm and a Leg, a show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann– I’m a reporter, and I like a challenge. So the job we’ve chosen on this show is to take one of the

most enraging, terrifying, depressing parts of American life, and bring you something entertaining, empowering, and useful. 

So, first: Jeanne wrote to us about what she knows from helping people enroll in Medicare. But she also had an instructive personal story to share. Because even experts have to scramble sometimes. 

A while ago, when Jeanne’s husband had a gut infection, he got prescribed two antibiotics. His insurance coverage meant one was gonna cost him thirty bucks. But the other one? His plan didn’t cover it And… . 

Jeanne: It was $1,200. For a 14 day supply it was just obscenely expensive. 

Dan: So immediately, Jeanne says she went into problem solving mode. And her order of operations provides a great template for any of us. 

Step one: Google for discounts. Just taking a quick first pass at the kind of thing we talked about in our last episode. Maybe that’s GoodRx. Maybe that’s a coupon from the drug maker. Results for Jeanne: Not great. 

Jeanne: I could get it down to $800. It’s like, still, you’re like $800. Really? 

Dan: So, on to step two: Tell your provider there’s a problem and ask for advice. 

Jeanne: We went back to the doctor and said, is there something else that you know you can do? 

Dan: Jeanne was thinking: Maybe the doc could recommend another antibiotic — one that insurance would cover. Or help them fight her husband’s insurance to get this drug covered. 

But actually, the doc’s proposal was much simpler. 

Jeanne: She said just take the other one. 

Dan: Just take the one Jeanne’s husband could get for thirty bucks. Skip the second drug. 

Jeanne: So he did, and he was fine!

Dan: END OF STORY. In this case. It’s not always that easy. But the moral is: ASK. If your insurance covers a different drug, your doc can tell you if it’s a good bet for you. If not… well… we’ll come back to other ways your doc could help. 

But right now let’s move on to the biggest, most valuable advice Jeanne gives to seniors– and that applies to everybody. 

Especially anybody with meds they’re taking long term, like blood pressure or cholesterol meds, or whatever. 

And the advice is this: Look ahead, every year. 

In the fall, when it’s time to sign up for next year’s insurance plan: Get a look at the list of which drugs your insurance will cover, and how much they expect you to pay for them. It’s called the formulary. 

Because even if you don’t change anything about your insurance, your insurance could change the formulary. That can happen to anybody. 

Jeanne sees it all the time with seniors, when their plans reboot at New Year’s. 

Jeanne: People come in in January and this happens every year, and say, I just went to the pharmacy and. They want $300 for my medicine. And last year, or last month in December, it was $30. 

Dan: These folks didn’t plan to change anything about their insurance — but their insurance plan changed on them– and stopped covering a drug they’ve been taking. Now they’re getting charged sticker price. 

And Jeanne’s like, ‘Man, I wish you’d have come to see us during the fall sign-up– open enrollment.’ 

Jeanne: We could have probably found a plan that covered that drug still.. 

Dan: Now, it’s true that folks on Medicare tend to have more choices than the rest of us here. In Medicare, drug coverage is its own separate plan — called Part D — and seniors in Jeanne’s county have more than a dozen to pick from. 

If you get insurance from work — and maybe there’s just one plan — this thing of looking ahead is maybe even more important.

At some point, maybe a couple months before the new year, you should get a chance to see that next year’s formulary 

And it could say, “Hey, your drug is gonna be more expensive for you next year” 

That’s your cue to start problem-solving right away. Get a plan in place before that new price kicks in. 

Step one: Check: Can you find discounts online that make this drug affordable? Cool. 

No? Time to get in touch with your provider’s office: start tapping their expertise. 

Jeanne: The provider normally has a lot of people with your condition and probably prescribes this medication a lot. 

Dan: And so, if your insurance company says they’ve got some other drug you could take, one they’ll pay for– your provider will know: could that drug work for you? 

And if you’ve got a choice of plans — but they all require a special approval process now for your drug — your provider will know: Is one of them more likely to actually issue that approval? 

Jeanne: Ask them about a plan where they have an easy time getting it approved for somebody with your condition where it always goes through. 

Dan: And that’s the plan you want to pick. And, speaking of getting your insurance company’s approval: 

We’re about to move from Jeanne’s advice– plan ahead, get your provider to help — to the next step. Because you can’t plan everything. Sometimes you get sick, with something new. No planning for that. 

And sometimes, your insurance is definitely not gonna say yes right away to the drug your doc thinks you need. And your doc thinks you need this particular drug. So, how ELSE can your provider help?

John: I work, uh — work for an industry with an approval rating below Congress. 

Dan: He’s a pharmaceutical sales rep! He asked us to keep his full name and employer confidential. 

He’s also an Arm and a Leg fan. 

John: I love it when, uh, I hear stories of average people just sticking it to the insurance company. It’s nice when the patient wins, cause they don’t get a lot of wins. 

Dan: We reached John in his primary office — also known as his car. 

When we asked listeners a few months ago to share lessons about getting prescription meds without paying an arm and a leg, he wrote right in with tips. 

And one, I love just for the attitude. Here’s John reading from the email he sent us: 

John: Step therapies. Uh, denials and price at pharmacy should be viewed as suggestions. 

Dan: Suggestions. Perfect. The other is much more specific. As a salesman, a big part of John’s job is prepping doctors for the fights they’re gonna have with insurance companies, to get approvals for drugs. He does that because approvals for them mean sales for John. 

Of course, approvals take time. 

John: But one thing that you know doesn’t care about time is diseases. 

The disease of Crohn’s or Bipolar disorder, whatever, isn’t like, look, I’ll hold off on affecting you until this prior authorization is done. 

Dan: So here’s John’s advice: while you’re fighting for that approval– pushing back on the insurance company’s “suggestion” that you try something else– Ask your provider if they can get free samples from the pharma company — from a rep like him.

John: And the provider hopefully will say, yeah, let me call the rep and we’ll leave some at front for you. 

Dan: Actually, your provider may already have some on hand. A study from a few years ago found that TWO THIRDS of primary-care practices had CLOSETS of pharmaceutical samples. Which, wow. 

So, let’s address something big: Like John joked about as we introduced him, pharma sales reps are NOT generally looked upon as model citizens. 

The rap is: Some of them use less-than-scrupulous tactics to encourage doctors to prescribe expensive drugs… even to patients who might not get extra benefit from a specific drug. Or, in the case of opioids — which got pushed really hard — might cause harm. And free samples are part of that process. 

So, some providers won’t meet with sales reps at all. Some health systems don’t allow any of their staff to meet with them. 

But you don’t have to approve of how pharmaceutical companies do their business to take advantage of John’s suggestion. And neither does your doctor. 

John says, to get free samples, your doctor might not even need to talk to anyone. 

They can just make a request online, at the manufacturer’s website. John says it definitely happens. 

John: So even with providers or doctors that I’ve never seen in my nine years, I know that they’ve gotten samples before. 

Dan: But here too, there will be limits. 

John: Some manufacturers don’t even do samples. So it really varies a lot. Dan: But a lot of these samples do exist — 

And the idea of using them as a stopgap while you fight to get your insurance to pay for the meds you need — I had never thought of it until we asked you, our listeners, for your tips.

And you also sent us this: Could a local clinic supply the meds you need for a price you can actually afford? That’s next.. 

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health issues in America. Their journalists do amazing work. We’re honored to be their colleagues. 

OK, a whole new kind of expert here. Like Jeanne, who we heard from earlier. Cristy Gupton also lives in North Carolina. She works as an independent employee benefits designer. You’re probably like, what the hell is that? Here’s how she describes her work. 

Cristy Gupton: Imagine you’re a kid in high school, in shop class, and your teacher puts an old engine on the table, and says, take it apart and put it back together again and make sure it works. 

Dan: Except, the machine is a health benefit program for workers. And– back to the shop-class metaphor — Cristy says she’s the real gear-head in the room . 

Cristy Gupton: By the time I put the engine back together, it works twice as good, but at half the cost. 

Dan: Cristy says she does it by ditching expensive, off-the-shelf parts — standard insurance policies from big companies — for custom solutions. It’s a WHOLE THING, and super-interesting, and worth going into. 

For now, she’s got one big tip that *some* of us could use to get access to meds at super-low prices. Basically it’s this: Look for a community health center that offers a sliding scale. They can get drugs at extremely low prices, through a federal program called 340B. 

How low? 

Cristy Gupton: The drug Humira is one of the most prescribed drugs in America. And the list price is probably somewhere in the neighborhood of 5,000 a month. But a 340B covered entity could purchase it for a penny. 

Dan: So we checked, and actually: Humira’s list price isn’t 5,000 dollars. It’s 7,000 dollars. But YES, a 340B clinic can get it for a penny. Now, they don’t get every drug that cheap, but..

And look: although this is all very much worth knowing about, it’s not guaranteed to work for you. 

340B is complicated in all kinds of ways. Here’s my colleague Emily Pisacreta asking Christy about it. 

Emily: Help me understand what 340B is. 

Cristy Gupton: I’ll give you my best, um, like only know enough to be dangerous answer. 

Dan: After checking some actual experts, here’s what we think you need to know: 

A federal law from the 1990s — section 340B of that law — basically requires drug-makers to give some hospitals and health centers that serve low-income folks super-duper discounts on meds. 

Those discounts don’t always get passed along to patients. The feds say hospitals and clinics can take a profit, to subsidize their other work . 

But the rules say: community health centers DO need to make drugs affordable to people with lower incomes. Specifically, to people who make less than two times the federal poverty level. 

For 2025, that’s just over 64 thousand dollars for a family of four. Not a lot. 

But it’s a lot of people: More than 28 percent of Americans qualify. And some clinics may have sliding scales for people with higher incomes than that. 

So: There’s a search tool. We’ve got a link wherever you’re listening to this. Find a clinic in your area, call them, and see what the deal is. 

One last thing to know: You’ve gotta actually be a patient at the clinic in order to use this program. And actually, if you meet the income requirements, all the clinic’s services are gonna be super-subidized. 

But if you don’t want to engage too deeply with the clinic– don’t want to switch over all your care to a new team — Cristy says, in her experience, you may not have to.

Cristy Gupton: It can be as loose as they just have a virtual visit. I mean, that’s pretty simple. 

Dan: Again, we’ve got a link to the search tool for finding a health center near you. Which of course…near you… not everybody is gonna have. Your mileage may vary, literally. But is it worth checking? Yeah, I think so. 

OK we’ve thrown a LOT at you. I know, I know. And we do have one more set of expert tips. From someone we are really glad to have met. So here’s Erika — and her expertise is part of a lifelong project. 

Erika: You know, as a child with Type one diabetes, I had a very dysfunctional household and I had to take care of myself from a very young age. I have learned that the skills that I developed as a child with a chronic illness are transferable into a career to help people be taken care of. 

Dan: So now, she works as a patient navigator– a kind of case worker, at a hospital in rural Oregon. 

When my colleague Emily talked with Erika, they bonded a little. 

Emily: I live with Type One Diabetes and I really wish that I had had a patient navigator, um, when I was diagnosed. 

Erika: Yeah, I wish I had me as a patient navigator too. 

Dan: Most of the patients Erika does work with are managing chronic conditions and other serious health problems, under tough circumstances. 

Erika: For example, let’s say a patient has an amputation and they’re told on discharge to keep it elevated and keep it clean. Well if they’re living in their car, that can be a challenge. So in that case, case management would try to find them a hotel for a couple weeks. 

Dan: And of course, one of the most common problems she tackles: helping people get their meds at prices they can afford. 

Erika: There are weeks where that’s all I’ll do.

Dan: For insured patients, Erika he starts with drugs-and-insurance 101: Helping them figure out which drugs their insurance covers, at what price to them, and coaching them before they call their insurance company. 

Erika:I offer to be on the call with them if they want. And I will tell you right now that we’re gonna be on hold with that insurance company for 30 minutes 

Dan: Yeah, that sounds familiar. Also, for some patients on Medicaid, Erika runs interference with bureaucracies. 

And, when there’s no way that insurance will make the right drugs affordable for her patients– including folks with no insurance at all– Erika helps them explore one of the options she wrote in to us about. 

“Patient Assistance Programs” based on income. Some are from manufacturers, others come from private foundations. 

Erika: It’s such a matter of somebody knowing who to ask and where to get the stuff. 

Dan: And there are websites to find this kind of thing — we’ve got links and guides for you — and she says the applications aren’t complicated. 

But the people she works with, they need extra help. 

Erika: A lot of my patients don’t even know how to use a computer or to get onto the internet, or they don’t have smart phones, they just have cell phones. So a lot of them, I meet with them. I take my laptop, and we do an online application. I help them fill it out. 

Dan: And then hope it works. Some programs only give out so much assistance per year, so not everybody gets help. 

Erika: It’s a frustrating fight. I feel bad that people have to wage this, you know, to get what they need to be healthy. It’s, it’s not like people are asking for BMW or new clothing. People are asking for, oftentimes medications they need to keep themselves alive. It’s, it’s like asking for oxygen. Like what if you were told you you couldn’t afford oxygen? That’s the way people feel sometimes.

Dan: And that’s why, even though Erika wrote to us about practical specifics, it’s her approach, her presence that we especially wanted to share with you. 

Erika: I advised all my patients to get a tattoo that says, be persistent. I mean, seriously, I don’t expect them to get tattoos. But as a patient who manages a chronic condition, you just have to be. 

Dan: Oh yeah. The ongoing burden of dealing with all this, it’s a bear. And it came up again and again when you wrote in to us. 

Erika: Yeah. Stress management, whew. 

Dan: For Erika’s patients, and for herself too. 

Erika: I have to remember to like, stop, step away, do some breathing. And these are things I teach to my patients a little bit too. Like, okay, let’s stop and do some breathing together on the phone. Okay. 

Dan: She calls her strategy “self compassion.” It’s about helping people see how much they’re already doing. 

Erika: I encourage people to take a moment and appreciate that about yourself. Okay? you’ve been on the phone with your insurance company for 30 minutes. 

You’re trying to get this done. You really need to appreciate that you’re doing that for your health. For your health. Feel good about that, at least. 

Dan: You are taking time to listen to this podcast. We are here, right now, together, doing our best. 

For the practical lessons — all the things to try, that may or may not work — we’ve done our best to write them down for you, and organize them so they’re useful, in our First Aid Kit newsletter. Four installments. 

You can find those newsletters — and these episodes — at Arm and a Leg show, dot com, slash, drugs. 

That’s the address where we first asked you to share what you’d learned by walking through this maze. Now we’re inviting you to come and see what we’ve learned from you.

Arm and a Leg show dot com, slash drugs. There’ll be a link wherever you’re listening to this. 

And you’ll find one more thing there, too. 

To honor the endless and ridiculous process that we sometimes have to go through to get our medicines… my colleague Claire Davenport, who has led the reporting for so much of this series, made an endless and ridiculous song. Well, with the help of an AI. Stay tuned after the credits for a little taste of that. 

We’ll be back with a new episode in a few weeks. 

Till next time, take care of yourself. 

This episode of An Arm and a Leg was produced by Emily Pisacreta and Claire Davenport with help from me, Dan Weissmann, and Lauren Gould. 

And edited by Ellen Weiss. 

Adam Raymonda is our audio wizard. 

Our music is by Dave Weiner and Blue Dot Sessions. 

Bea Bosco is our consulting director of operations. 

Lynne Johnson is our operations manager. 

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America — and a core program at KFF: an independent source of health policy research, polling, and journalism. 

Zach Dyer is senior audio producer at KFF Health News. He’s the editorial liaison to this show. 

An Arm and a Leg is Distributed by KUOW — Seattle’s NPR station. And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor. 

They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

Finally, thank you to everybody who supports this show financially. You can join in any time at Arm and a Leg show, dot com, slash: support. 

And NOW….a little treat. 

So: At one point, we were like, “What if we could make like a jingle to help people remember all the tactics we’re talking about?” 

But when our producer Claire tried actually writing one, with AI supplying the melody and the band — it just kinda showed us how endless and ridiculous the list actually is. 

And we found that just adorable. Here’s how it starts… 

AI Song: I am a prescription – medication. And as you might know, I’m Expensive in this nation. Getting me can be confusing. And often quite scary. Since when it comes to meds. The prices can vary. Luckily, there’s some tricks you can try. When you’re in this situation and the price is high… 

Dan: Alright, I think you get the idea — and if you want more, it’s all at Arm and a Leg show dot com, slash, drugs. Along with these podcast episodes and First Aid Kit newsletter installments, and everything we hope you’ll actually find useful. Thanks.

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

For more from the team at “An Arm and a Leg,” subscribe to its weekly newsletter, First Aid Kit. You can also follow the show on Facebook and the social platform X. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.

To hear all KFF Health News podcasts, click here.

And subscribe to “An Arm and a Leg” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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

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Shorter enrollment periods. More paperwork. Higher premiums. The sweeping tax and spending bill pushed by President Donald Trump includes provisions that would not only reshape people’s experience with the Affordable Care Act but, according to some policy analysts, also sharply undermine the gains in health insurance coverage associated with it.

The moves affect consumers and have particular resonance for the 19 states (plus Washington, D.C.) that run their own ACA exchanges.

Many of those states fear that the additional red tape — especially requirements that would end automatic reenrollment — would have an outsize impact on their policyholders. That’s because a greater percentage of people in those states use those rollovers versus shopping around each year, which is more commonly done by people in states that use the federal healthcare.gov marketplace.

“The federal marketplace always had a message of, ‘Come back in and shop,’ while the state-based markets, on average, have a message of, ‘Hey, here’s what you’re going to have next year, here’s what it will cost; if you like it, you don’t have to do anything,’” said Ellen Montz, who oversaw the federal ACA marketplace under the Biden administration as deputy administrator and director at the Center for Consumer Information and Insurance Oversight. She is now a managing director with the Manatt Health consulting group.

Millions — perhaps up to half of enrollees in some states — may lose or drop coverage as a result of that and other changes in the legislation combined with a new rule from the Trump administration and the likely expiration at year’s end of enhanced premium subsidies put in place during the covid-19 pandemic. Without an extension of those subsidies, which have been an important driver of Obamacare enrollment in recent years, premiums are expected to rise 75% on average next year. That’s starting to happen already, based on some early state rate requests for next year, which are hitting double digits.

“We estimate a minimum 30% enrollment loss, and, in the worst-case scenario, a 50% loss,” said Devon Trolley, executive director of Pennie, the ACA marketplace in Pennsylvania, which had 496,661 enrollees this year, a record.

Drops of that magnitude nationally, coupled with the expected loss of Medicaid coverage for millions more people under the legislation Trump calls the “One Big Beautiful Bill,” could undo inroads made in the nation’s uninsured rate, which dropped by about half from the time most of the ACA’s provisions went into effect in 2014, when it hovered around 14% to 15% of the population, to just over 8%, according to the most recent data.

Premiums would rise along with the uninsured rate, because older or sicker policyholders are more likely to try to jump enrollment hurdles, while those who rarely use coverage — and are thus less expensive — would not.

After a dramatic all-night session, House Republicans passed the bill, meeting the president’s July 4 deadline. Trump is expected to sign the measure on Independence Day. It would increase the federal deficit by trillions of dollars and cut spending on a variety of programs, including Medicaid and nutrition assistance, to partly offset the cost of extending tax cuts put in place during the first Trump administration.

The administration and its supporters say the GOP-backed changes to the ACA are needed to combat fraud. Democrats and ACA supporters see this effort as the latest in a long history of Republican efforts to weaken or repeal Obamacare. Among other things, the legislation would end several changes put in place by the Biden administration that were credited with making it easier to sign up, such as lengthening the annual open enrollment period and launching a special program for very low-income people that essentially allows them to sign up year-round.

In addition, automatic reenrollment, used by more than 10 million people for 2025 ACA coverage, would end in the 2028 sign-up season. Instead, consumers would have to update their information, starting in August each year, before the close of open enrollment, which would end Dec. 15, a month earlier than currently.

That’s a key change to combat rising enrollment fraud, said Brian Blase, president of the conservative Paragon Health Institute, because it gets at what he calls the Biden era’s “lax verification requirements.”

He blames automatic reenrollment, coupled with the availability of zero-premium plans for people with lower incomes that qualify them for large subsidies, for a sharp uptick in complaints from insurers, consumers, and brokers about fraudulent enrollments in 2023 and 2024. Those complaints centered on consumers’ being enrolled in an ACA plan, or switched from one to another, without authorization, often by commission-seeking brokers.

In testimony to Congress on June 25, Blase wrote that “this simple step will close a massive loophole and significantly reduce improper enrollment and spending.”

States that run their own marketplaces, however, saw few, if any, such problems, which were confined mainly to the 31 states using the federal healthcare.gov.

The state-run marketplaces credit their additional security measures and tighter control over broker access than healthcare.gov for the relative lack of problems.

“If you look at California and the other states that have expanded their Medicaid programs, you don’t see that kind of fraud problem,” said Jessica Altman, executive director of Covered California, the state’s Obamacare marketplace. “I don’t have a single case of a consumer calling Covered California saying, ‘I was enrolled without consent.’”

Such rollovers are common with other forms of health insurance, such as job-based coverage.

“By requiring everyone to come back in and provide additional information, and the fact that they can’t get a tax credit until they take this step, it is essentially making marketplace coverage the most difficult coverage to enroll in,” said Trolley at Pennie, 65% of whose policyholders were automatically reenrolled this year, according to KFF data. KFF is a health information nonprofit that includes KFF Health News.

Federal data shows about 22% of federal sign-ups in 2024 were automatic-reenrollments, versus 58% in state-based plans. Besides Pennsylvania, the states that saw such sign-ups for more than 60% of enrollees include California, New York, Georgia, New Jersey, and Virginia, according to KFF.

States do check income and other eligibility information for all enrollees — including those being automatically renewed, those signing up for the first time, and those enrolling outside the normal open enrollment period because they’ve experienced a loss of coverage or other life event or meet the rules for the low-income enrollment period.

“We have access to many data sources on the back end that we ping, to make sure nothing has changed. Most people sail through and are able to stay covered without taking any proactive step,” Altman said.

If flagged for mismatched data, applicants are asked for additional information. Under current law, “we have 90 days for them to have a tax credit while they submit paperwork,” Altman said.

That would change under the tax and spending plan before Congress, ending presumptive eligibility while a person submits the information.

A white paper written for Capital Policy Analytics, a Washington-based consultancy that specializes in economic analysis, concluded there appears to be little upside to the changes.

While “tighter verification can curb improper enrollments,” the additional paperwork, along with the expiration of higher premiums from the enhanced tax subsidies, “would push four to six million eligible people out of Marketplace plans, trading limited fraud savings for a surge in uninsurance,” wrote free market economists Ike Brannon and Anthony LoSasso.

“Insurers would be left with a smaller, sicker risk pool and heightened pricing uncertainty, making further premium increases and selective market exits [by insurers] likely,” they wrote.

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Four years before Kimberly Gallagher enrolled in Medicaid herself, the public health insurance program’s rules prompted her to make an excruciating choice — to give up guardianship of her son so she could work as his caregiver.

Now, another proposed twist in the rules could mean that, even though Missouri pays her to do that work, she might still have to prove to the state that she’s not unemployed.

The Kansas City, Missouri, resident has cared for her disabled son, Daniel, for all 31 years of his life. A rare genetic condition called Prader-Willi syndrome, in addition to autism, left him with an intellectual disability; a constant, excessive hunger; and an inability to speak. His needs left Gallagher, an elementary school teacher by training, with little opportunity to work outside her home.

As congressional Republicans slash about $1 trillion in federal Medicaid spending, Gallagher is among the 18.5 million Americans who could be required to prove that they work enough to keep their health insurance.

A budget bill that passed the House and Senate would require 80 hours of work or community service a month for adults who are insured through the Affordable Care Act’s Medicaid expansion program, which has allowed states to extend Medicaid coverage to more adults with low incomes. Forty states, plus Washington, D.C., have expanded their programs, additions that now cover about 20 million Americans, including Gallagher.

She enrolled in the coverage in December 2023, after she could no longer afford her private insurance. Before her husband died of cancer in 2019, the couple paid for private insurance and supported themselves on the income he earned as a master watchmaker. After his death, Gallagher was left to earn a living and find insurance on her own. At 59, she’s too young to collect her husband’s Social Security survivor benefit.

The Medicaid program that pays for in-home care for Daniel and 8,000 other Missourians with disabilities allows family members to be compensated for caregiving, but only if they’re not the legal guardian of the person they care for. So, Gallagher went to court to give up her rights to make decisions for her son and transfer authority to her parents.

“I think it’s appalling that it’s required, but it was necessary,” she said. “There was no way I could work outside of taking care of Daniel.”

Republicans have touted Medicaid work requirements both as a way to reduce federal spending on the program and as a moral imperative for Americans.

“Go out there. Do entry-level jobs. Get into the workforce. Prove that you matter. Get agency into your own life,” Mehmet Oz, administrator of the Centers for Medicare & Medicaid Services, said in a recent interview on Fox Business.

Democrats, meanwhile, have cast the requirements as bureaucratic red tape that won’t meaningfully increase employment but will cause eligible people to lose their health insurance because of administrative hurdles.

Indeed, the vast majority of Americans enrolled in Medicaid expansion are already working, caregiving, attending school, or have a disability, according to an analysis by KFF, a health information nonprofit that includes KFF Health News.

And while the Congressional Budget Office estimates the work requirement included in the House bill would cause 4.8 million Americans to lose their insurance, only about 300,000 of those people are unemployed because of lack of interest in working, according to the Urban Institute, a nonprofit research group. Recent history in states that have tried work requirements suggests technical and paperwork problems have caused a substantial portion of coverage losses.

Still, the provisions are generally popular among Republican lawmakers and the public. Sen. Josh Hawley (R-Mo.), who has repeatedly cautioned against cutting people off from Medicaid, has signaled support for adding work requirements.

And 68% of Americans favor the requirement described in the House bill, according to a recent poll conducted by KFF. But support for work requirements dropped as low as 35% when respondents learned that most Medicaid recipients already work and could lose their coverage because of paperwork requirements.

That’s what happened in Arkansas, where 18,000 people lost their Medicaid coverage in 2018 after the state phased in a work requirement. Thousands more were on pace to lose coverage in 2019 before a federal judge halted the requirement, largely over concerns about coverage losses. In discussions with focus groups, KFF found that many Arkansas Medicaid participants did not fully understand the requirements, despite the state’s outreach efforts, and some people didn’t receive mailed notices. Others were confused because the work-reporting paperwork and separate forms to renew Medicaid coverage asked for similar information.

Many family caregivers would be exempt from the work requirements proposed in Congress, but Gallagher probably would not, since she had to relinquish guardianship of her son to be paid for the work. While the hours she already logs should be enough to satisfy the requirement, she’ll need to report them again — unless the state can identify her through its existing data. But Missouri has a history of procedural problems in the state agency that administers Medicaid.

In early 2022, for example, Missouri was taking more than 100 days on average to process applications for Medicaid expansion, a wait that prompted patients to put off needed care and was more than twice the processing time allowed by federal law.

And 79% of the more than 378,000 Missourians who lost Medicaid coverage when covid-era enrollment protections ended in 2023 did so because of procedural reasons.

The next year, a federal judge ruled that Missourians were illegally being denied food aid by the state, in part because insufficient staffing at call centers left eligible people without assistance.

“They’re historically understaffed,” Timothy McBride, a health economist at Washington University in St. Louis, said of the state agency that administers Medicaid and food assistance. “I think that’s really the underlying problem.”

McBride’s analysis of Missouri’s Medicaid recipients found that fewer than 45,000 of the people enrolled in expansion in 2023 were unemployed for reasons other than caregiving, disability, attending school, or retirement. But more than twice that many Missourians could lose their insurance if work requirements prompt disenrollment rates similar to Arkansas’ implementation, according to a study from the Center on Budget and Policy Priorities, a left-leaning think tank that analyzes government policies.

The estimate assumes many otherwise eligible people would still lose coverage as a result of falling through the cracks, McBride said.

Hawley, who backed the Senate bill, declined to comment for this article. The senator previously told reporters that “we can sort that out” when asked about eligible people inadvertently losing Medicaid because of work requirements.

Gallagher worries about her coverage, because she recently was diagnosed with Hashimoto’s disease, an autoimmune disorder that attacks the thyroid gland. She said she had to search for her Medicaid card to fill the prescription that followed, having barely used it in the year in a half she’s been covered.

She also worries about her son’s Medicaid. A nursing home is not a realistic option, considering his needs. His coverage doubles as Gallagher’s only source of income and also pays for other caregivers, when she can find them, who give her breaks to tend to her own health and to her aging parents.

But nearly all in-home services like those Daniel receives are optional programs that states are not required to include in their Medicaid programs. And the magnitude of the cuts being proposed have prompted fears that the optional programs could be chopped.

“It would destroy our lives,” Gallagher said. “The only income we would have would be Daniel’s Social Security.”

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The last time a Republican-controlled Congress and President Donald Trump moved to slash Medicaid spending, in 2017, a key political force stood in their way: GOP governors.

Now, as Congress steamrolls toward passing historic Medicaid cuts of about $1 trillion over 10 years through Trump’s tax and spending legislation, red-state governors are saying little publicly about what it does to health care — even as they face reductions that will punch multibillion-dollar holes in their states’ budgets.

Medicaid, a program jointly run by states and the federal government, covers more than 70 million low-income or disabled people, including nearly half of the nation’s children. Republicans say the $900 billion-a-year program was allowed to grow too large under Democrats Barack Obama and Joe Biden by adding nondisabled adults they say don’t deserve government assistance, and they have long sought to scale it back.

Some of the biggest health cuts in the legislation Trump calls the “One Big Beautiful Bill” are achieved through new policies that would reduce enrollment by imposing more paperwork demands on enrollees, including a requirement that many prove they’re working. Those policies would affect only states that expanded Medicaid to more low-income people under the Affordable Care Act.

Nineteen of those states are led by Republican governors. Their silence on the bill’s health measures is giving political cover to GOP lawmakers from their states as they seek to cut Medicaid coverage for millions of people who gained it within the last decade.

KFF Health News contacted all 19 governors for comment on the legislation’s Medicaid cuts. Only six responded. Most said they backed imposing a work requirement on adult Medicaid enrollees.

“Implementing work requirements for able-bodied adults is a good and necessary reform so that Medicaid is being used for temporary assistance and not a permanent entitlement,” said Drew Galang, a spokesperson for Gov. Patrick Morrisey of West Virginia.

“Governor Rhoden supports workforce participation as a requirement of Medicaid expansion eligibility,” said Josie Harms, a spokesperson for South Dakota Gov. Larry Rhoden, adding that congressional lawmakers have the governor’s support: “South Dakota has an excellent federal delegation, and Governor Rhoden trusts them to fight for South Dakota’s priorities while delivering on President Trump’s promises.”

In a sign of how the political winds have changed, none of the governors said anything about another of the legislation’s significant cuts, to provider taxes — a tool that nearly all of their states use to help pay their share of Medicaid and gain additional funds from the federal government. That change is expected to cost states billions.

No Longer a Bipartisan Issue

In contrast to the radio silence from GOP governors, Democratic governors have campaigned against the megabill for weeks.

Pennsylvania Gov. Josh Shapiro posted on the social platform X that Trump and congressional Republicans were misleading Americans by saying they were cutting only waste, fraud, and abuse in Medicaid.

“They’re rushing to kick hundreds of thousands of Pennsylvanians off their healthcare — and lying about it,” he posted. “The damage this will do here in Pennsylvania and across America is staggering and will be felt for years to come.”

In New York, Gov. Kathy Hochul on July 1 charged that Trump’s legislation would devastate hospitals and could lead to more than 34,000 job cuts in her state.

“The collective impact of the GOP reconciliation bill in Washington, D.C., could force hospitals to curtail critically needed services such as maternity care and psychiatric treatment, not to mention to downsize operations, and even close entirely,” she said in a statement.

In 2017, the chorus was bipartisan, as Republican governors in Ohio, Nevada, and Massachusetts spoke out against cutting Medicaid. Trump’s bill to repeal much of the Affordable Care Act and roll back its Medicaid expansion narrowly failed in the Senate.

“It’s been surprising that red-state governors, particularly those in Medicaid expansion states, haven’t spoken out against Medicaid cuts,” said Larry Levitt, executive vice president for health policy at KFF, a health information nonprofit that includes KFF Health News. “Republican governors were a potent political force in the failed 2017 effort to repeal and replace the ACA, including Medicaid expansion.”

What’s changed since 2017, policy experts say, is that there are fewer moderate Republican governors, and GOP state executives who advocated for Medicaid expansion over a decade ago are no longer in office.

Additionally, seven of the then-red states that expanded Medicaid did so via ballot initiative, mostly over opposition from their governors.

In fact, the Medicaid work requirement is backed by many Republican governors, even if it means less federal Medicaid money and leads to fewer people covered.

Several states, including Arkansas and Ohio, have already passed state laws to implement a requirement that adults enrolled under the ACA’s Medicaid expansion work, volunteer, go to school, or participate in job training. Most states have yet to bring work requirement programs to fruition because they are waiting for federal government approval.

Charles “Chip” Kahn, president of the Federation of American Hospitals, a trade group of investor-owned hospitals, said that while fewer governors have engaged publicly in trying to block Medicaid cuts under the bill, federal lawmakers are hearing from legislators in their states.

A political dilemma for Republican governors is that, unlike in 2017, the bill before Congress is not legislation aimed expressly at repealing Obamacare. With a scope broader than health care, it would extend many of Trump’s tax cuts and direct billions in new spending toward border security, immigration enforcement, and the military, while also cutting health care spending.

“It’s like playing multidimensional chess rather than focusing on one issue,” Kahn said.

Larry Jacobs, director of the Center for the Study of Politics and Governance at the University of Minnesota, said some Republican governors may have expressed concerns privately to their states’ GOP senators but are not speaking out publicly for fear of drawing Trump’s wrath.

“Why are they being cagey? Trump and not wanting to be ‘Liz Cheney’d,’” Jacobs said, referring to the Republican former Wyoming lawmaker whom Trump helped oust after she served as vice chair of an inquiry into his attempts to overturn the results of the 2020 election.

Walking Political Tightropes

The political peril Republican lawmakers face in publicly challenging Trump remains explicit. On June 29, Sen. Thom Tillis (R-N.C.) announced he would not run for reelection after he voiced concerns about the bill and the president threatened to back a primary challenger. Tillis was one of three GOP senators to vote against it on July 1, though it still narrowly passed.

In addition to the work requirement, the biggest Medicaid cuts in the bill stem from its restrictions on provider taxes — levies that states impose on hospitals, nursing homes, and other health care institutions to help increase their federal reimbursement. Much of the additional money is then returned to the health care providers in the form of higher payments for their Medicaid patients.

The practice, which has been adopted in every state but Alaska, has been criticized by some Beltway Republicans as “money laundering” — even though the taxes are approved by state lawmakers and the federal Centers for Medicare & Medicaid Services and have been allowed under federal law for decades.

The Senate bill would limit the money states could raise — a move that would mean billions in funding cuts to states and their hospitals.

The states with Republican governors that expanded Medicaid are Alaska, Arkansas, Idaho, Indiana, Iowa, Louisiana, Missouri, Montana, Nebraska, New Hampshire, Nevada, North Dakota, Ohio, Oklahoma, South Dakota, Vermont, Virginia, West Virginia, and Utah.

One of the governors who expressed concerns about repealing the Obamacare Medicaid expansion in 2017 was Jim Justice of West Virginia, a Democrat at the time.

In a June 2017 letter to West Virginia Sen. Shelley Moore Capito, a Republican, Justice wrote: “Since so many of our people count on Medicaid, any cut to Medicaid would destroy families in West Virginia.” He added that “the consequences would be beyond catastrophic.”

On July 1, Justice — elected to the Senate as a Republican last year — voted for Trump’s megabill, including its Medicaid cuts.

“The Senator believes this bill strikes a good balance between protecting the most vulnerable and those who rely on the program while rooting out waste, fraud, and abuse to ensure the program is run efficiently for those deserving,” William O’Grady, a Justice spokesperson, said in an email July 2.

KFF Health News correspondent Arielle Zionts contributed to this report.

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

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President Donald Trump’s “One Big Beautiful” budget reconciliation bill would make some of the most sweeping changes in health policy in years, largely affecting Medicaid and Affordable Care Act plans — with reverberations felt throughout the health care system.

With only a few exceptions, the budget reconciliation process — which allows the political party in control to pass a bill with only 51 votes in the Senate, rather than the usual 60 — is how nearly every major piece of health legislation has passed Congress since the 1980s.

But using reconciliation to constrict rather than expand health coverage, as the GOP is attempting now? That is unusual.

One of the best-known programs born via reconciliation is the “COBRA” health insurance continuation, which allows people who leave jobs with employer-provided insurance to keep it for a time, as long as they pay the full premium.

That is one of dozens of health provisions tucked into COBRA, or the Consolidated Omnibus Budget Reconciliation Act of 1985. Also included was the Emergency Medical Treatment and Active Labor Act, which requires hospitals that take Medicare to treat or transfer patients with medical emergencies, regardless of their insurance status — a law that’s become a focus of abortion opponents as they seek to limit access to the procedure.

A key reason so much health policy has passed this way has to do with how Congress manages the federal budget. Federal government spending falls into two categories: mandatory, or spending required by existing law, and discretionary, which traditionally is allocated and renewed each year as part of the appropriations process.

Lawmakers use the reconciliation process to make changes to mandatory spending programs — Medicare and Medicaid are among the largest — as well as tax policy. (For complicated political reasons, reconciliation bills cannot touch Social Security, the last prong in the entitlement program trifecta.)

Reconciliation comes into play only if it is needed to reconcile taxes or mandatory spending to comply with the terms Congress sets for itself each year, through the annual budget resolution. This year the GOP’s focus is finding the cash to renew Trump’s expiring tax cuts, which largely benefit wealthier Americans, and boost military and border security spending.

In years when Congress orders a reconciliation bill, health policy almost always plays a major part. Usually, reconciliation instructions call for reductions in payments to health providers under Medicare — which costs the most of the federal health programs.

For much of the 1980s and 1990s, Democrats in Congress quietly used reconciliation to expand eligibility for the Medicaid program, often by cutting more than the budget called for from Medicare. For every $5 cut from Medicare, about $1 would be redirected to provide Medicaid to more low-income people.

But budget reconciliation has also become a convenient way to make policy changes to the nation’s major health programs, as it is usually considered a “must-pass” bill likely to be signed by the president and not subject to filibuster in the Senate.

As a result, all manner of now-familiar health programs were created by budget reconciliation bills, many of which provided health coverage to more Americans.

The 1989 reconciliation bill created a new system for paying doctors who treat Medicare patients, as well as a new federal agency to study the cost, quality, and effectiveness of health care, today known as the Agency for Healthcare Research and Quality.

Children’s health has been a popular add-on over the years, including the gradual expansion of Medicaid coverage to more children based on family income. The 1993 reconciliation bill created the Vaccines for Children program, which ensures the availability and affordability of vaccines nationwide for uninsured and underinsured kids. The 1997 reconciliation bill created the Children’s Health Insurance Program, which today provides insurance to more than 7 million children.

In fact, the list of major health bills of the past 50 years not passed using budget reconciliation is short. For instance, the 2003 Medicare Modernization Act, which added a prescription drug benefit to the program for the first time, attracted just enough bipartisan support to pass on its own.

The biggest health care law of recent decades — the Affordable Care Act — didn’t start out as a reconciliation bill, but it ended up using the process to clear its final hurdles.

After initial passage of the bill in December 2009, a special election cost Democrats their 60th seat in the Senate — and with it, the supermajority they needed to pass the bill without Republican votes. In the end, the two chambers used a separate reconciliation measure, the Health Care and Education Reconciliation Act of 2010, to negotiate a compromise that included the ACA.

HealthBent, a regular feature of KFF Health News, offers insight into and analysis of policies and politics from KFF Health News chief Washington correspondent Julie Rovner, who has covered health care for more than 30 years.

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

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Durante meses, María, de 55 años, cuidadora de adultos mayores en el condado de Orange, se ha esforzado por no sonreír.

Le preocupa que si abre demasiado la boca, la gente vea sus dientes astillados y cubiertos de placa. Inmigrante sin papeles, María no tiene seguro médico ni dental. Cuando le empiezan a doler los dientes, toma analgésicos. El verano pasado, un dentista le dijo que arreglarle la dentadura le costaría $2.400. Es más de lo que puede permitirse.

“Es carísimo”, dijo María, quien generalmente trabaja 12 horas al día subiendo y bajando de la cama a clientes y ayudándolos con la higiene, a tomar los medicamentos y con las tareas del hogar. “Necesito dinero para mis hijos, para el alquiler, para el transporte, para la comida. A veces, no me queda nada para mí”.

Una organización de defensa de los trabajadores inmigrantes puso en contactó a KFF Health News con María. Por temor a la deportación, pidió que solo se usara su nombre de pila en este artículo.

María se encuentra entre los 2.6 millones de inmigrantes que viven en California sin estatus legal, según estimaciones del gobierno federal.

El estado había buscado gradualmente incorporar a estos inmigrantes a su programa de Medicaid, conocido como Medi-Cal.

Pero ahora, ante el congelamiento de las inscripciones estatales, los residentes californianos de bajos ingresos que se encuentran en el país sin papeles, junto con los proveedores y trabajadores comunitarios que los ayudan, evalúan con inquietud los beneficios de avanzar con las solicitudes de Medi-Cal frente a los riesgos de ser descubiertos y deportados por el gobierno federal.

La Legislatura de California, que busca cerrar un déficit presupuestario proyectado de $12 mil millones, aprobó una propuesta del gobernador demócrata Gavin Newsom para finalizar la inscripción en Medi-Cal en enero de 2026 para los mayores de 19 años sin estatus legal. Los legisladores están en proceso de definir los detalles finales del acuerdo presupuestario antes de que entre en marcha el nuevo año fiscal.

Mientras tanto, las redadas federales de inmigración, que parecen haber afectado al menos a una clínica de salud en el estado, ya están provocando que algunas personas teman buscar atención médica, según defensores de los inmigrantes y proveedores de salud.

Y se espera que la reciente noticia de que funcionarios de la administración Trump están compartiendo datos de los beneficiarios de Medicaid, incluyendo su estatus migratorio, con las autoridades de inmigración erosione aún más la confianza en el programa.

Andrew Nixon, vocero del Departamento de Salud y Servicios Humanos de Estados Unidos (HHS), afirmó que la agencia, que supervisa los Centros de Servicios de Medicare y Medicaid (CMS), tenía la autoridad legal para compartir los datos y abordar la “negligencia sistémica sin precedentes bajo la administración Biden-Harris, que permitió que inmigrantes indocumentados explotaran Medicaid mientras millones de estadounidenses luchaban por acceder a la atención médica, particularmente en estados como California”.

Para complicar aún más la situación, la administración Trump ha amenazado con retener los fondos de estados que ofrecen cobertura médica a personas sin estatus legal.

Actualmente, alrededor de 1.6 millones de personas que residen en el país sin documentos están inscritas en Medi-Cal.

En 2016, California comenzó a ampliar Medi-Cal a personas de bajos ingresos sin estatus legal, comenzando con los niños, y luego lo expandió gradualmente a jóvenes, adultos mayores y, en enero de este año, a personas de entre 26 y 49 años. El Departamento de Servicios de Atención Médica del estado, que supervisa Medi-Cal, se asoció con clínicas de salud comunitarias para ayudar a inscribir a las personas elegibles.

Es demasiado pronto para determinar el impacto que las últimas acciones estatales y federales estén teniendo en las cifras de inscripción, ya que los datos solo están disponibles hasta marzo. Sin embargo, muchos proveedores y defensores afirmaron que prevén un efecto negativo en la inscripción de inmigrantes, por miedo.

Seciah Aquino es directora ejecutiva de la Latino Coalition for a Healthy California, que apoya a los promotores de salud comunitarios, quienes ayudan a difundir la expansión de Medi-Cal a los adultos sin papeles. Poco más de la mitad de los beneficiarios del seguro médico público en California son latinos, en comparación con solo el 30% de los beneficiarios de Medicaid en todo el país.

Aquino afirmó que su coalición les pedirá a los promotores que informen sobre los riesgos de compartir datos para que los miembros de la comunidad puedan tomar decisiones informadas. “Se toman muy en serio que el consejo que le dieron a un miembro de la comunidad ahora pueda perjudicarlos”, expresó.

Newsom condenó el intercambio de datos, calificándolo de “legalmente dudoso”, mientras que los senadores nacionales Adam Schiff y Alex Padilla, ambos demócratas, han exigido que el Departamento de Seguridad Nacional (DHS) destruya cualquier dato compartido.

El Departamento de Servicios de Atención Médica de California anunció el 13 de junio que estaba solicitando más información al gobierno federal. La agencia dijo que enviaba informes mensuales a los CMS con información demográfica y de elegibilidad, incluyendo nombre y dirección, según lo exige la ley.

De acuerdo a lo informado, también se compartieron con el DHS datos de los afiliados a Medicaid de Illinois, el estado de Washington y Washington, D.C.

Jamie Munks, vocera del Departamento de Atención Médica y Servicios de Familia de Illinois, la agencia estatal de Medicaid, afirmó que el departamento estaba “profundamente preocupado” por la noticia, y que los datos se transmitían regularmente a los CMS con el entendimiento de que estaban protegidos.

En Sacramento, los legisladores demócratas se encontraron en la incómoda situación de tener que reducir los beneficios de salud para residentes de bajos ingresos con un estatus migratorio insatisfactorio, incluyendo personas sin estatus legal, personas con residencia permanente (green card o tarjeta verde) por menos de cinco años, y algunas otras que están en proceso de solicitar un estatus legal o tienen estatus que los protege de la deportación.

Además de apoyar el congelamiento de la inscripción a Medi-Cal para inmigrantes mayores de 19 años que residen en el país sin documentos, los legisladores acordaron cobrar primas mensuales a todos los residentes con un estatus migratorio insatisfactorio de entre 19 y 59 años. Newsom propuso una prima mensual de $100 a partir de enero de 2027; los legisladores estatales contraofertaron una de $30 a partir de julio de 2027.

“Lo que escucho en los sitios es que la gente me dice que les va a resultar muy difícil realizar estos pagos de primas, ya sean de $100 o $30”, dijo Carlos Alarcón, analista de políticas de salud y beneficios públicos del California Immigrant Policy Center, un grupo de defensa. “La realidad es que la mayoría de la gente ya tiene presupuestos limitados”.

La Legislatura rechazó una propuesta del gobernador para prohibir que los inmigrantes con un estatus migratorio insatisfactorio reciban atención de largo plazo en residencias de adultos mayores y atención domiciliaria a través de Medi-Cal, pero aceptó la eliminación de los beneficios dentales a partir de julio de 2026.

Los proveedores de atención médica afirmaron que, sin cobertura de Medi-Cal, muchos inmigrantes se verán obligados a buscar atención de emergencia, que es más costosa para los contribuyentes que la atención preventiva y de nivel primario.

Sepideh Taghvaei, directora dental de Dientes Community Dental Care del condado de Santa Cruz, presenció este fenómeno en 2009, cuando el estado recortó los beneficios dentales de Medi-Cal para adultos. Los pacientes llegaban con la cara hinchada y un dolor insoportable, con afecciones tan avanzadas que requerían tratamiento hospitalario. “No es rentable”, afirmó.

El senador estatal Roger Niello, republicano y vicepresidente del comité de presupuesto del Senado, afirmó que cree que California no debería financiar Medi-Cal para personas sin estatus legal, especialmente considerando los desafíos fiscales del estado. También expresó su preocupación por la posibilidad de que la cobertura para quienes residen en el país sin papeles anime a otros a mudarse a California.

“Si mantenemos ese gasto para los no ciudadanos, tendremos que recortar en otras áreas, y eso sin duda afectará a los ciudadanos”, aseguró.

Los californianos también están cambiando de opinión. En una encuesta realizada en mayo por el Public Policy Institute of California, el 58% de los adultos se opuso al beneficio.

Para María, los cambios en las políticas de salud la han dejado paralizada. Desde que llegó aquí hace cinco años, su prioridad ha sido ganar dinero para mantener a sus tres hijos, a quienes dejó con sus padres en su país de origen, contó.

La mujer no se enteró de que podría ser elegible para Medi-Cal hasta principios de este año y no había tenido tiempo de completar el papeleo. Después que una amiga le dijera que el estado podría congelar la inscripción en enero, comenzó a apresurarse para completar el proceso de inscripción.

Pero entonces se enteró de que los datos de Medi-Cal se habían compartido con las autoridades de inmigración. “Decepcionada y asustada”, así describió su reacción.

De repente, inscribirse en Medi-Cal ya no le parece buena idea, dijo.

Phil Galewitz y Bram Sable-Smith contribuyeron con este artículo.

Esta historia fue producida por KFF Health News, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.

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

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For months, Maria, 55, a caregiver to older adults in California’s Orange County, has been trying not to smile.

If she opens her mouth too wide, she worries, people will see her chipped, plaque-covered front teeth. An immigrant without legal status, Maria doesn’t have health or dental insurance. When her teeth start to throb, she swallows pain pills. Last summer, a dentist said it would cost $2,400 to fix her teeth. That’s more than she can afford.

“It’s so expensive,” said Maria, who often works 12-hour days lifting clients in and out of bed and helping them with hygiene, medication management, and housework. “I need money for my kids, for my rent, for transport, for food. Sometimes, there’s nothing left for me.”

KFF Health News connected with Maria through an advocacy organization for immigrant workers. Fearing deportation, she asked that only her first name be used.

Maria is among what the federal government estimates are 2.6 million immigrants living in California without legal status. The state had gradually sought to bring these immigrants into its Medicaid program, known as Medi-Cal. But now, facing a state enrollment freeze, low-income California residents in the U.S. without legal permission — along with the providers and community workers that help them — are anxiously weighing the benefits of pushing forward with Medi-Cal applications against the risks of discovery and deportation by the federal government.

Seeking to close a projected $12 billion budget deficit, California Gov. Gavin Newsom, a Democrat, signed a balanced state budget on June 27 that will end new Medi-Cal enrollment in January 2026 for those over 19 without legal status.

Meanwhile, federal immigration raids — which appear to have targeted at least one health clinic in the state — are already making some people afraid to seek medical care, say immigrant advocates and health providers. And the recent news that Trump administration officials are sharing Medicaid enrollee data, including immigration status, with deportation authorities is expected to further erode trust in the program.

U.S. Department of Health and Human Services spokesperson Andrew Nixon said the agency, which oversees the Centers for Medicare & Medicaid Services, had the legal authority to share the data to address “unprecedented systemic neglect under the Biden-Harris administration that allowed illegal immigrants to exploit Medicaid while millions of Americans struggle to access care, particularly in states like California.”

Further complicating matters, the Trump administration has threatened to withhold funds from states that provide health coverage to people without legal status. Currently, about 1.6 million people in the country without authorization are enrolled in Medi-Cal.

In 2016, California began opening Medi-Cal to low-income people lacking legal status, starting with children, then gradually expanded it to young people, older adults, and — in January 2024 — those ages 26 to 49. The state Department of Health Care Services, which oversees Medi-Cal, partnered with community health clinics to help get eligible people enrolled.

It’s too early to tell what impact the latest state and federal developments are having on enrollment numbers, since data is available only through March. But many health care providers and advocates said they expect a chilling effect on immigrant enrollment.

Seciah Aquino is executive director of the Latino Coalition for a Healthy California, which supports community health workers — also called promotores — who help spread awareness about Medi-Cal’s expansion to adults lacking legal status. Just over half of public health insurance recipients in California are Latino, compared with just 30% of Medicaid enrollees nationwide.

Aquino said her coalition will tell promotores to disclose data-sharing risks so community members can make informed decisions. 

“They take it very personally that advice that they provided to a fellow community member could now hurt them,” Aquino said.

Newsom condemned the data sharing, calling the move “legally dubious,” while U.S. Sens. Adam Schiff and Alex Padilla, both Democrats, have demanded that the Department of Homeland Security destroy any data shared.  

California’s Department of Health Care Services announced June 13 that it is seeking more information from the federal government. The agency said it submitted monthly reports to CMS with demographic and eligibility information, including name and address, as required by law.

Medicaid enrollee data from Illinois, Washington state, and Washington, D.C., was also reportedly shared with DHS. Jamie Munks, a spokesperson for the Illinois Department of Healthcare and Family Services, the state’s Medicaid agency, said the department was “deeply concerned” by the news and that the data was regularly passed along to CMS with the understanding that it was protected.

In Sacramento, Democratic lawmakers found themselves in the uncomfortable position of rolling back health benefits for low-income residents with unsatisfactory immigration status, including people without legal status, people who’ve held green cards for under five years, and some others who are in the process of applying for legal status or have statuses meant to protect them from deportation. In addition to the Medi-Cal enrollment freeze for immigrants 19 and older in the country without authorization, all enrolled residents with unsatisfactory immigration status from 19 to 59 years old will be charged $30 monthly premiums starting in July 2027.

“What I’m hearing on the ground is folks are telling me they’re going to have a really hard time making these premium payments,” said Carlos Alarcon, health and public benefits policy analyst with the California Immigrant Policy Center, an advocacy group. “The reality is most people already have limited budgets.”

The legislature rejected a proposal from the governor to bar immigrants with unsatisfactory immigration status from receiving long-term nursing home and in-home care through Medi-Cal but went along with eliminating dental benefits starting in July 2026.

Health care providers said that without Medi-Cal coverage, many immigrants will be forced to seek emergency care, which is more expensive for taxpayers than preventive and primary-level care. Sepideh Taghvaei, chief dental officer at Santa Cruz County’s Dientes Community Dental Care, saw this play out in 2009 when the state cut adult Medi-Cal dental benefits. Patients came in with swollen faces and excruciating pain, with conditions so advanced that they required hospital treatment. “It’s not cost-effective,” she said.

State Sen. Roger Niello, a Republican who serves as vice chair of the Senate budget committee, said he believes California shouldn’t be funding Medi-Cal for people who lack legal status, particularly given the state’s fiscal challenges. He also said he worries that coverage of people in the country without authorization could encourage others to move to California.

“If we maintain that expense to the noncitizen,” he said, “we’re going to have to cut someplace else, and that’s undoubtedly going to affect citizens.”

Californians, too, are going through a change of heart. In a May poll conducted by the Public Policy Institute of California, 58% of adults opposed the benefit.

For Maria, shifting health care policies have left her feeling paralyzed. Since she arrived here five years ago, the caregiver’s focus has been on earning money to support her three children, whom she left with her parents in her home country, she said.

Maria didn’t learn she might be eligible for Medi-Cal until earlier this year and hadn’t yet found time to complete the paperwork. After a friend told her that the state could freeze enrollment in January, she began rushing to finish the sign-up process. But then she learned that Medi-Cal data had been shared with immigration authorities.

“Disappointed and scared” was how she described her reaction.

Suddenly, she said, enrolling in Medi-Cal doesn’t seem like a good idea.

Phil Galewitz and Bram Sable-Smith contributed to this report.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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

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This story can be republished for free (details).

CLARKESVILLE, Ga. — Last September, Alton Fry went to the doctor concerned he had high blood pressure. The trip would result in a prostate cancer diagnosis.

So began the stress of trying to pay for tens of thousands of dollars in treatment — without health insurance.

“I’ve never been sick in my life, so I’ve never needed insurance before,” said Fry, a 54-year-old self-employed masonry contractor who restores old buildings in the rural Appalachian community he’s called home nearly all his life.

Making sure he had insurance was the last thing on his mind, until recently, Fry said. He had been rebuilding his life after a prison stay, maintaining his sobriety, restarting his business, and remarrying his wife. “Things got busy,” he said.

Now, with a household income of about $48,000, Fry and his wife earn too much to qualify for Georgia’s limited Medicaid expansion. And he said he found that the health plans sold on the state’s Affordable Care Act exchange were too expensive or the coverage too limited.

In late April, a friend launched a crowdfunding campaign to help Fry cover some of the costs. To save money, Fry said, he’s taking a less aggressive treatment route than his doctor recommended.

“There is no help for middle-class America,” he said.

More than 26 million Americans lacked health insurance in the first six months of 2024, according to the Centers for Disease Control and Prevention.

The uninsured are mostly low-income adults under age 65, and people of color, and most live in the South and West. The uninsured rate in the 10 states that, like Georgia, have not expanded Medicaid to nearly all low-income adults was 14.1% in 2023, compared with 7.6% in expansion states, according to KFF, a health information nonprofit that includes KFF Health News.

Health policy researchers expect the number of uninsured to swell as the second Trump administration and a GOP-controlled Congress try to enact policies that explicitly roll back health coverage for the first time since the advent of the modern U.S. health system in the early 20th century.

Under the “One Big Beautiful Bill Act” — budget legislation that would achieve some of President Donald Trump’s priorities, like extending tax cuts mainly benefiting the wealthy — some 10.9 million Americans would lose health insurance by 2034, according to estimates by the nonpartisan Congressional Budget Office based on a House version of the budget bill.

A Senate version of the bill could result in more people losing Medicaid coverage, with reductions in federal spending and rules that would make it harder for people to qualify. But that bill suffered a major blow June 26 when the Senate parliamentarian, a nonpartisan official who enforces the chamber’s rules, rejected several health provisions — including the proposal to gradually reduce provider taxes, a mechanism that nearly every state uses to increase its federal Medicaid funding.

The number could rise to 16 million if proposed rule changes to the ACA take effect and tax credits that help people pay for ACA plans expire at the end of the year, according to the CBO. In KFF poll results released in June, nearly two-thirds of people surveyed viewed the bill unfavorably and more than half said they were worried federal funding cuts would hurt their family’s ability to obtain and afford health care.

Like Fry, more people would be forced to pay for health expenses out-of-pocket, leading to delays in care, lost access to needed doctors and medications, and poorer physical and financial health.

“The effects could be catastrophic,” said Jennifer Tolbert, deputy director of KFF’s Program on Medicaid and the Uninsured.

The House-passed bill would represent the largest reduction in federal support for Medicaid and health coverage in history, she said. If the Senate approves it, it would be the first time Congress moved to eliminate coverage for millions of people.

“This would take us back,” Tolbert said.

A Patchwork System

The United States is the only wealthy country where a substantial number of citizens lack health insurance, due to nearly a century of pushback against universal coverage from doctors, insurance companies, and elected officials.

“The complexity is everywhere throughout the system,” said Sherry Glied, dean of New York University’s Wagner School of Public Service, who worked in the George H.W. Bush, Clinton, and Obama administrations. “The big bug is that people fall between the cracks.”

This year, KFF Health News is speaking to Americans about the challenges they face in finding health insurance and the effects on their ability to get care; to providers who serve the uninsured; and to policy experts about why, even when the nation hit its lowest recorded uninsured rate in 2023, nearly a tenth of the U.S. population still lacked health coverage.

So far, the reporting has found that despite decades of policies designed to increase access to care, the very structure of the nation’s health insurance system creates the opposite effect.

Government-backed universal coverage has eluded U.S. policymakers for decades.

After lobbying from physician groups, President Franklin D. Roosevelt abandoned plans to include universal health coverage in the Social Security Act of 1935. Then, because of a wage and salary cap used to control inflation during World War II, more employers offered health insurance to lure workers. In 1954, health coverage was formally exempted from income tax requirements, which led more employers to offer the benefit as part of compensation packages.

Insurance coverage offered by employers came to form the foundation of the U.S. health system. But eventually, problems with linking health insurance to employment emerged.

“We realized, well, wait, not everybody is working,” said Heidi Allen, an associate professor at the Columbia School of Social Work who studies the impact of social policies on access to care. “Children aren’t working. People who are elderly are not working. People with disabilities are not working.”

Yet subsequent efforts to expand coverage to all Americans were met with backlash from unions who wanted health insurance as a bargaining chip, providers who didn’t want government oversight, and those who had coverage through their employers.

That led policymakers to add programs piecemeal to make health insurance accessible to more Americans.

There’s Medicare for older adults and Medicaid for people with low incomes and disabilities, both created in 1965; the Children’s Health Insurance Program, created in 1997; the ACA’s exchange plans and Medicaid expansion for people who can’t access job-based coverage, created in 2010.

As a result, the U.S. has a patchwork of health insurance programs with numerous interest groups vying for dollars, rather than a cohesive system, health policy researchers say.

Falling Through the Cracks

The lack of a cohesive system means that, even though Americans are eligible for health insurance, they struggle to access it, said Mark Shepard, an associate professor of public policy at the Harvard Kennedy School of Government. No central entity exists in the U.S. to ensure that all people have a plan, he said.

Over half of the uninsured might qualify for Medicaid or subsidies that can help cover the costs of an ACA plan, according to KFF. But many people aren’t aware of their options or can’t navigate overlapping programs — and even subsidized coverage can be unaffordable.

Those who have fallen through the cracks said it feels like the system has failed them.

Yorjeny Almonte of Allentown, Pennsylvania, earns about $2,600 a month as an inspector in a cabinet warehouse. When she started her job in December 2023, she didn’t want to spend nearly 10% of her income on health insurance.

But, last year, her uninsured mom chose to fly to the Dominican Republic to get care for a health concern. So Almonte, 23, who also needed to see a doctor, investigated her employer’s health offerings. By then she had missed the deadline to sign up.

“Now I have to wait another year,” she said.

In January, Camden, Alabama, resident Kiana George, who’s uninsured, landed in an intensive care unit months after she stopped seeing a nurse practitioner and taking blood pressure medications — an ordeal that saddled her with nearly $7,000 in medical bills.

George, 30, was kicked off Medicaid in 2023 after she got hired by an after-school program. It pays $800 a month, an income too high to qualify her for Medicaid in Alabama, which hasn’t expanded to cover most low-income adults. She also doesn’t make enough for a free or reduced-cost ACA plan.

George, who has a 9-year-old daughter, said she “has no idea” how she can repay the debt from the emergency room visit. And because she fears more bills, she has given up on treatment for ovarian cysts.

“It hurts, but I’m just gonna take my chances,” she said.

Widening the Gaps

Health insurance is fundamentally a financial product, intended to protect the policyholder’s pocketbook from accidents or illnesses.

Researchers have known for decades that a lack of insurance coverage leads to poor access to health care, said Tom Buchmueller, a health economist at the University of Michigan Ross School of Business.

“It’s only more recently we’ve had really good, strong evidence that shows that health insurance really does improve health outcomes,” Buchmueller said.

Research released this spring by the National Bureau of Economic Research found that expanding Medicaid reduced low-income adults’ chances of dying by 2.5%. In 2019, a separate study published by that nonpartisan think tank provided experimental evidence that health insurance coverage reduced mortality among middle-aged adults.

In late May, the House narrowly advanced the budget legislation that independent government analysts said would result in millions of Americans losing health insurance coverage and reduce federal spending on programs like Medicaid by billions of dollars.

A key provision would require some Medicaid enrollees to work, volunteer, or complete other qualifying activities for 80 hours a month, starting at the end of 2026. Most Medicaid enrollees already work or have some reason they can’t, such as a disability, according to KFF.

House Speaker Mike Johnson has defended the requirement as “moral.”

“If you are able to work and you refuse to do so, you are defrauding the system. You’re cheating the system,” he told CBS News in the wake of the bill’s passage.

A Senate version of the bill also includes work requirements and more frequent eligibility checks for Medicaid recipients.

Fiscal conservatives argue a solution is needed to curb health care’s rising costs.

The U.S. spends about twice as much per capita on health care as other wealthy nations, and that spending would grow under the GOP’s budget bill, said Michael Cannon, director of health policy studies at the Cato Institute, a think tank that supports less government spending on health care.

But the bill doesn’t address the root causes of administrative complexity or unaffordable care, Cannon said. To do that would entail, for instance, doing away with the tax break for employer-sponsored care, which he said fuels excessive spending, raises prices, and ties health insurance to employment. He said the bill should cut federal funding for Medicaid, not just limit its growth.

The bill would throw more people into a high-cost health care landscape with little protection, said Aaron Carroll, president and CEO of AcademyHealth, a nonpartisan health policy research nonprofit.

“There’s a ton of evidence that shows that if you make people pay more for health care, they get less health care,” he said. “There’s lots of evidence that shows that disproportionately affects poor, sicker people.”

Labon McKenzie, 45, lives in Georgia, the only state that requires some Medicaid enrollees to work or complete other qualifying activities to obtain coverage.

He hasn’t been able to work since he broke multiple bones after he fell through a skylight while on the job three years ago. He got fired from a county road and bridge crew after the accident and hasn’t been approved for Social Security or disability benefits.

“I can’t stand up too long,” he said. “I can’t sit down too long.”

In February, McKenzie started seeing double, but canceled an appointment with an ophthalmologist because he couldn’t come up with the $300 the doctor wanted in advance. His cousin gave him an eye patch to tide him over, and, in desperation, he took expired eye drops his daughter gave him. “I had to try something,” he said.

McKenzie, who lives in rural Fort Gaines, wants to work again. But without benefits, he can’t get the care he needs to become well enough.

“I just want my body fixed,” he said.

Have you recently lost your health insurance coverage? Have you been uninsured for a while? Click here to contact KFF Health News and share your story.

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

USE OUR CONTENT

This story can be republished for free (details).