The state could tackle rural health issues long into the future by investing its awards from the Rural Health Transformation Program, the director of Wyoming’s health department, Stefan Johansson, told state lawmakers.

But it’s unclear whether the maneuver will pass muster with the federal government.

If approved, Wyoming’s Rural Health Transformation Perpetuity fund could provide $28.5 million for the state to spend every year, according to materials presented to lawmakers.

Congressional Republicans created the Rural Health Transformation Program as a last-minute sweetener in their One Big Beautiful Bill Act last summer. The funding was intended to offset concerns about the outsize fallout anticipated in rural communities from the new law, which is expected to reduce Medicaid spending by nearly $1 trillion over the next decade.

Since 2010, 152 rural hospitals in the U.S. have shuttered completely or stopped offering inpatient services, according to the Sheps Center for Health Services Research at the University of North Carolina. The guidelines for the federal rural health program say states can use only 15% of their funding for direct payments to providers, including hospitals.

CMS officials announced first-year funding on Dec. 29 after scoring states’ applications. States had until Jan. 30 to submit revised budgets and other documents that align with their grant awards. CMS has until March 1 to review and approve the updated material.

Wyoming — the least populous state, with about 588,000 residents — will receive $205 million in the program’s first year, $5 million more than it asked for.

States must spend each year’s grants by the end of the following fiscal year, according to CMS rules. If they don’t, unused money will be redistributed to other states. The final deadline for all spending is Oct. 1, 2032, with leftover funds being returned to the federal government.

Given those rules, “how do you square that with squirreling money away in an account?” state Rep. Ken Pendergraft, a Republican, asked during a hearing on Wyoming’s plan.

Johansson said that depositing the federal grants into the perpetuity fund counts as expending them.

He said that CMS called in December to specifically ask questions about the fund and that he believes the agency has formally approved it. But “the devil’s always in the details,” he said, as the state works with CMS during the budget review period.

Emails obtained by KFF Health News through public records requests show CMS told officials in some states in early November that the grant money can’t “fund an endowment, capital fund, or other vehicle resembling an investment fund with the purpose of generating income.”

Wyoming officials wrote in the state’s application that the perpetuity fund won’t be making or keeping any profit.

“All program income from these investments will directly fund” rural health programs, they wrote.

CMS spokesperson Catherine Howden did not directly comment on whether Wyoming’s perpetuity idea is allowed. Instead, she said states must follow regulations related to the program and federal grants.

The Trump administration gave states a mandate to spend their money by fall 2032, but on projects that will continue to help rural patients even after the federal program ends.

The perpetuity fund would ensure just that, said Patrick Hardigan, dean of the College of Health Sciences at the University of Wyoming.

“Rather than spend out now,” Hardigan said, “we would have this available to help fund us over a longer time period.”

The state health department has already presented lawmakers with a bill to create the perpetuity fund and approve other parts of its rural health plan.

The legislation says Wyoming would put 80% of this year’s award — $164 million — and 69.5% of the funding it receives over the next four years into the fund. The state treasurer’s office would invest the fund in equities, including stocks. The health department plans to spend 4% of the fund’s money — in line with its expected return — each year, according to materials presented to lawmakers.

About 41% of the annual fund distribution would be spent on incentive payments for qualifying small hospitals, the bill says. The assistance could include one-time grants, medical debt relief for patients, and ongoing payments to offset fixed costs. This funding could amount to 2.5% to 10% of these hospitals’ annual operating expenses, according to an estimate in Wyoming’s application.

Bennett said it’s unclear whether all those types of payments are allowed under the federal rules.

“I think that states will try to do a lot of creative things like this, and CMS will approve or not on a case-by-case basis,” he said.

The bill says around 27% of annual spending would go to incentive payments to encourage coordination or consolidation among rural ambulance services. The funding could be ongoing or grants that help pay for ambulances, communications equipment, and regional dispatch services.

But these incentives would come with strings attached. Hospitals and ambulance services could receive payments only if they reduce “unprofitable, duplicative or nonessential” services and participate in “cost-containment arrangements,” such as regional collaborations and shared services.

About 22% of the annual spending would provide scholarships to help Wyomingites afford nursing, behavioral health, emergency medical services, and physician education. In exchange, recipients would have to work in the state for five years.

The remaining spending, around 11%, would be for scholarships to help doctors in training afford medical school, residency programs, and fellowships if they agree to work in an “underserved” Wyoming county for five years. The state health department would prioritize scholarships for people pursuing family medicine, obstetrics, or other high-demand specialties.

Johansson told Wyoming lawmakers that CMS could claw back money if a future state legislature decides to spend the fund in ways not allowed under the federal rural health program. He said this “check and balance” could last for decades.

“I can’t predict the future,” Johansson said, but “I think they have the authority to go look at the appropriate use of those funds through their audit parameters.”

Other states proposed funds in their applications, but Wyoming’s appears unique, according to a KFF Health News review of state applications.

For example, Kentucky wants to create a rural health endowment to continue its work once the federal program ends. But it would be backed by charitable donations, not seed money and investments from the federal funding.

Several states mention putting some of their federal award money into what they call rural health “catalyst funds.” But these funds, sometimes augmented with private contributions, would be invested in rural health technology.

Bennett said he’s never heard of a state investing any other federal health grant the way Wyoming wants to.

He said that in setting aside significant portions of its Rural Health Transformation Program awards, Wyoming would have much less money for rural health care in the short term in exchange for an ongoing revenue stream that could last decades.

“Everything has trade-offs,” Bennett said.

The Wyoming House Appropriations Committee unanimously approved the bill on Feb. 12, sending the legislation to the House floor.

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Regulating artificial intelligence, especially its use by health insurers, is becoming a politically divisive topic, and it’s scrambling traditional partisan lines.

Boosters, led by Trump, are not only pushing its integration into government, as in Medicare’s experiment using AI in prior authorization, but also trying to stop others from building curbs and guardrails. A December executive order seeks to preempt most state efforts to govern AI, describing “a race with adversaries for supremacy” in a new “technological revolution.”

“To win, United States AI companies must be free to innovate without cumbersome regulation,” Trump’s order said. “But excessive State regulation thwarts this imperative.”

Across the nation, states are in revolt. At least four — Arizona, Maryland, Nebraska, and Texas — enacted legislation last year reining in the use of AI in health insurance. Two others, Illinois and California, enacted bills the year before.

Legislators in Rhode Island plan to try again this year after a bill requiring regulators to collect data on technology use failed to clear both chambers last year. A bill in North Carolina requiring insurers not to use AI as the sole basis of a coverage decision attracted significant interest from Republican legislators last year.

DeSantis, a former GOP presidential candidate, has rolled out an “AI Bill of Rights,” whose provisions include restrictions on its use in processing insurance claims and a requirement allowing a state regulatory body to inspect algorithms.

“We have a responsibility to ensure that new technologies develop in ways that are moral and ethical, in ways that reinforce our American values, not in ways that erode them,” DeSantis said during his State of the State address in January.

Ripe for Regulation

Polling shows Americans are skeptical of AI. A December poll from Fox News found 63% of voters describe themselves as “very” or “extremely” concerned about artificial intelligence, including majorities across the political spectrum. Nearly two-thirds of Democrats and just over 3 in 5 Republicans said they had qualms about AI.

Health insurers’ tactics to hold down costs also trouble the public; a January poll from KFF found widespread discontent over issues like prior authorization. (KFF is a health information nonprofit that includes KFF Health News.) Reporting from ProPublica and other news outlets in recent years has highlighted the use of algorithms to rapidly deny insurance claims or prior authorization requests, apparently with little review by a doctor.

Last month, the House Ways and Means Committee hauled in executives from Cigna, UnitedHealth Group, and other major health insurers to address concerns about affordability. When pressed, the executives either denied or avoided talking about using the most advanced technology to reject authorization requests or toss out claims.

AI is “never used for a denial,” Cigna CEO David Cordani told lawmakers. Like others in the health insurance industry, the company is being sued for its methods of denying claims, as spotlighted by ProPublica. Cigna spokesperson Justine Sessions said the company’s claims-denial process “is not powered by AI.”

Indeed, companies are at pains to frame AI as a loyal servant. Optum, part of health giant UnitedHealth Group, announced Feb. 4 that it was rolling out tech-powered prior authorization, with plenty of mentions of speedier approvals.

“We’re transforming the prior authorization process to address the friction it causes,” John Kontor, a senior vice president at Optum, said in a press release.

Still, Alex Bores, a computer scientist and New York Assembly member prominent in the state’s legislative debate over AI, which culminated in a comprehensive bill governing the technology, said AI is a natural field to regulate.

“So many people already find the answers that they’re getting from their insurance companies to be inscrutable,” said Bores, a Democrat who is running for Congress. “Adding in a layer that cannot by its nature explain itself doesn’t seem like it’ll be helpful there.”

At least some people in medicine — doctors, for example — are cheering legislators and regulators on. The American Medical Association “supports state regulations seeking greater accountability and transparency from commercial health insurers that use AI and machine learning tools to review prior authorization requests,” said John Whyte, the organization’s CEO.

Whyte said insurers already use AI and “doctors still face delayed patient care, opaque insurer decisions, inconsistent authorization rules, and crushing administrative work.”

Insurers Push Back

With legislation approved or pending in at least nine states, it’s unclear how much of an effect the state laws will have, said University of Minnesota law professor Daniel Schwarcz. States can’t regulate “self-insured” plans, which are used by many employers; only the federal government has that power.

But there are deeper issues, Schwarcz said: Most of the state legislation he’s seen would require a human to sign off on any decision proposed by AI but doesn’t specify what that means.

The laws don’t offer a clear framework for understanding how much review is enough, and over time humans tend to become a little lazy and simply sign off on any suggestions by a computer, he said.

Still, insurers view the spate of bills as a problem. “Broadly speaking, regulatory burden is real,” said Dan Jones, senior vice president for federal affairs at the Alliance of Community Health Plans, a trade group for some nonprofit health insurers. If insurers spend more time working through a patchwork of state and federal laws, he continued, that means “less time that can be spent and invested into what we’re intended to be doing, which is focusing on making sure that patients are getting the right access to care.”

Linda Ujifusa, a Democratic state senator in Rhode Island, said insurers came out last year against the bill she sponsored to restrict AI use in coverage denials. It passed in one chamber, though not the other.

“There’s tremendous opposition” to anything that regulates tactics such as prior authorization, she said, and “tremendous opposition” to identifying intermediaries such as private insurers or pharmacy benefit managers “as a problem.”

In a letter criticizing the bill, AHIP, an insurer trade group, advocated for “balanced policies that promote innovation while protecting patients.”

“Health plans recognize that AI has the potential to drive better health care outcomes — enhancing patient experience, closing gaps in care, accelerating innovation, and reducing administrative burden and costs to improve the focus on patient care,” Chris Bond, an AHIP spokesperson, told KFF Health News. And, he continued, they need a “consistent, national approach anchored in a comprehensive federal AI policy framework.”

Seeking Balance

In California, Newsom has signed some laws regulating AI, including one requiring health insurers to ensure their algorithms are fairly and equitably applied. But the Democratic governor has vetoed others with a broader approach, such as a bill including more mandates about how the technology must work and requirements to disclose its use to regulators, clinicians, and patients upon request.

Chris Micheli, a Sacramento-based lobbyist, said the governor likely wants to ensure the state budget — consistently powered by outsize stock market gains, especially from tech companies — stays flush. That necessitates balance.

Newsom is trying to “ensure that financial spigot continues, and at the same time ensure that there are some protections for California consumers,” he said. He added insurers believe they’re subject to a welter of regulations already.

The Trump administration seems persuaded. The president’s recent executive order proposed to sue and restrict certain federal funding for any state that enacts what it characterized as “excessive” state regulation — with some exceptions, including for policies that protect children.

That order is possibly unconstitutional, said Carmel Shachar, a health policy scholar at Harvard Law School. The source of preemption authority is generally Congress, she said, and federal lawmakers twice took up, but ultimately declined to pass, a provision barring states from regulating AI.

“Based on our previous understanding of federalism and the balance of powers between Congress and the executive, a challenge here would be very likely to succeed,” Shachar said.

Some lawmakers view Trump’s order skeptically at best, noting the administration has been removing guardrails, and preventing others from erecting them, to an extreme degree.

“There isn’t really a question of, should it be federal or should it be state right now?” Bores said. “The question is, should it be state or not at all?”

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After his mom finally saw a specialist in Glasgow, about an hour away, she was diagnosed with stage 4 colon cancer, Bighorn said.

Now, 16 years after his mother’s death, Bighorn has access to regular screenings for cancer and other specialty care that she didn’t have, through a health insurance program the Fort Peck Tribes created in 2016. The program, which covers most of the costs for the roughly 1,000 tribal citizens enrolled, is among a growing number of tribally sponsored health insurance programs.

Such programs vary by tribe, but they essentially screen and enroll people living within tribal boundaries in Affordable Care Act marketplace plans. They allow participating Native Americans flexibility to go to outside doctors and clinics when care through the Indian Health Service is unavailable.

“I’d be in a bind otherwise,” said Bighorn, a 65-year-old tribal game warden and member of the Dakota community.

But the Fort Peck Tribes now limit who has access to that coverage. Other tribal organizations that offer Native Americans similar coverage are struggling with rising costs, too.

The financial crunch began when congressional lawmakers allowed enhanced subsidies under the Affordable Care Act to expire on Dec. 31. Those tax credits, created under the Biden administration during the covid-19 pandemic, expanded subsidized health coverage for millions of people. By late 2025, ACA plans saw about 24 million enrollees, more than twice the number of pre-pandemic annual sign-ups. The cost of coverage shot up for most of those people as the expanded subsidies expired, and enrollment so far has dropped by more than 1 million people, according to federal health officials.

The subsidies had also boosted tribal health insurance programs, like the one Bighorn is enrolled in. The programs pay the price of each person’s share of premiums after subsidies, and the coverage lowers patients’ treatment costs. Now that premium prices have ballooned, so have tribes’ costs.

Rae Jean Belgarde, who directs Fort Peck Tribes’ program, said the higher costs leave the tribes with one option at this point: “Start limiting who gets help.”

The tribes are helping people shift to other insurance options and, in some cases, find state programs to cover their premiums. Tribal leaders also sent a letter to Montana’s all-Republican congressional delegation asking them to support extending the subsidies.

“Our program is saving lives,” the letter read. Belgarde said she didn’t know whether the lawmakers responded.

Scrambling for Solutions

U.S. House members approved a temporary extension of the enhanced subsidies in January. But that measure stalled in the Senate. Lawmakers are scrambling for an alternative after President Donald Trump threatened to veto an extension if a bill reaches his desk. On Jan. 15, the president released an outline of a health care proposal that includes creating savings accounts for people to pay their health costs — an idea Senate Republicans previously floated as an alternative to the subsidies.

A.C. Locklear, CEO of the National Indian Health Board, a nonprofit that works to improve health in Native communities, said tribes are “looking at ways to cut back just as much as everyone else.”

Native Americans as a group continue to face disproportionately high rates of chronic diseases. Their median age at death is 14 years younger than that of white Americans.

“Reducing access to even just general primary care has a significant impact on those disparities,” Locklear said.

Tribal leaders have said letting the subsidies expire further undermines the federal government’s duty to ensure adequate care for Native Americans.

In exchange for taking tribal land through colonization, the U.S. government made long-standing promises to provide for the health and well-being of tribes. Native Americans are guaranteed free health care at clinics and hospitals operated or funded by the Indian Health Service. But that agency’s chronic underfunding has created massive blackouts in care. It sometimes pays for patients’ outside care through its Purchased/Referred Care program, but that’s limited too. Due to funding shortfalls, the agency prioritizes which treatments it will pay for.

To help fill the coverage gaps, some tribal nations have built their own health insurance programs. When tribes pay health premiums, clinics and hospitals in their areas can bill for services that might otherwise go unpaid. Some tribes have leveraged that money to expand services.

“I don’t see tribes getting rid of these programs,” Locklear said. “But it will drastically shift how much tribes can really put back in their community.”

For example, Tuba City Regional Health Care Corp., in northern Arizona within the Navajo Nation, is unique in providing comprehensive cancer treatment on a reservation, Locklear said. The corporation, he said, estimates its costs to cover patients this year are increasing by roughly 170% to nearly $38,000 per month without the enhanced subsidies.

One of the newer programs is on the Blackfeet reservation in northwestern Montana, where basic health services can be hard to find. Medical visits are often offered on a first-come, first-served basis, and services vanish when staff positions go unfilled, said Lyle Rutherford, a Blackfeet Nation council member.

“Some of it is just getting a regular eye appointment, or a primary care appointment,” Rutherford said.

The tribe has been slowly building its health insurance program since launching it in 2024. Rutherford said the enhanced subsidies made that possible. Fewer than 400 people are enrolled out of an estimated 3,000 who qualify. In January, the tribe paused the employer-sponsored coverage portion of its insurance program, which at the time included 52 people.

He said tribal leaders are seeking extra funding to keep the program afloat, and he hopes Congress finds a solution.

Lives on the Line

The impact goes beyond tribes’ insurance programs. The Urban Institute, a Washington, D.C.-based economic and social policy research nonprofit, estimates that 125,000 Native Americans will become uninsured in 2026 due to the higher costs.

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It’s all part of a drama that roiled the ACA’s 2026 open enrollment period. Congressional debate over whether to extend more generous subsidies made available under the Biden administration led to the longest-ever government shutdown and focused public attention on rising health care costs and the affordability issue.

The enhanced subsidies, which expanded eligibility both by lowering the percentage of household income people had to pay toward their care and removing an income cap, expired at the end of last year. As a result, just about everyone buying ACA coverage saw their costs increase. For some, what they paid toward premiums doubled or more, even though less generous subsidies remain in place.

Many experts expected ACA enrollment, which hit a record 24 million in 2025, to fall this time around.

“If you raise the price of something a whole lot, economics tell us that a lot of people will buy less of it or not buy at all,” said Katherine Hempstead, a senior policy officer with the Robert Wood Johnson Foundation.

Here are things to watch now:

Initial Numbers Aren’t Final

The Congressional Budget Office told lawmakers in December 2024 that not extending the enhanced subsidies would cause 2.2 million people to lose insurance in 2026, with further increases in following years. Analysts with the Wakely Consulting Group also estimated that millions would opt out of insurance for this year.

Data released Jan. 28 by federal officials showed a year-over-year drop of about 1.2 million enrollments across the federal healthcare.gov marketplace and those run by states. Overall, there were 23 million enrollees, including 3.4 million new to ACA coverage.

At about the same time last year, there were 24.2 million sign-ups, with 3.9 million new to the marketplaces.

But there’s more to it than those initial numbers.

For one thing, both years’ data was pegged to Jan. 15 for the federal marketplace, which closed its open enrollment period that day. But, the data for the states that run their own marketplaces included sign-ups in most cases only through Jan. 10 or 11, even though some held open enrollment until the end of the month. Thus, the numbers don’t reflect what might have happened in those last days. Was there a surge in state sign-ups? Or, conversely, did the marketplaces see more enrollees cancel their coverage?

Additionally, those initial numbers are a mix of newly minted ACA enrollees and existing customers, many of whom were auto-reenrolled for 2026 — which raises other issues.

For existing, reenrolled policyholders, the real figures won’t be known for weeks or months, when it becomes clear how many actually pay their premiums. Some consumers may not have focused on their reenrollment costs or may have hoped Congress would extend the subsidies.

That’s an important factor to keep in mind because the CBO and Wakely estimates of millions losing insurance were based on projections for full-year coverage, not initial sign-ups.

In the coming weeks, “consumers may find they really can’t afford the premiums and cancel their plans, while carriers may also cancel coverage for nonpayment,” said Pat Kelly, executive director of Your Health Idaho, a state-based ACA marketplace, during a Jan. 22 call with reporters.

Sharp Differences in State Enrollment Patterns

Changes are also afoot in the 19 other states (and the District of Columbia) that run their own exchanges, some of which have issued more detailed data about enrollment than the federal marketplace.

Most states saw lower enrollment for 2026 than the prior year, with the biggest drop in North Carolina, where sign-ups fell by nearly 22%, federal data shows.

In a few states — including New Mexico, Texas, California, and Maryland, as well as the District of Columbia — the number of people selecting ACA plans increased.

The jump was largest in New Mexico, with its initial number of people selecting plans up by nearly 14%. Increases were in the single digits in the other states and Washington, D.C.

New Mexico — uniquely — used its own tax dollars to fully offset the loss of the more generous federal tax subsidies for all consumers. A few other states, including California, Colorado, Maryland, and Washington, used state money to help some enrollees.

The State Marketplace Network, a collective of 22 state marketplaces supported by the National Academy for State Health Policy, said initial enrollment figures raise concern. Compared with the same time last year, outright plan cancellations are up 83% in Colorado, disenrollments are four times what they were in Idaho, and Virginia has seen cancellations double.

New enrollments are down 32% in California from the same period last year, according to data from the state. In Pennsylvania, people ages 55 to 64, the group with the highest premiums, and young people 26 to 34 are terminating their coverage in higher numbers than other age groups, state data shows.

“We have drastically higher rates of people dropping their coverage,” said Devon Trolley, executive director of the Pennsylvania Health Insurance Exchange Authority. “We had 70,000 drop in the last two months, from early retirees to small-business owners to farmers not knowing how to make ends meet.”

On Feb. 9, Pennsylvania released final numbers, showing enrollment dropped by about 2% from last year, although that figure masks some of the effects. The state says nearly 18% of enrollees dropped coverage altogether, with older and rural residents being the most likely to fall out.

Some Republicans credited Trump-administration-backed anti-fraud measures, which included a range of regulatory and legislative changes, for tightening the system. Although some of those actions were paused by a federal court and have not taken effect, those ACA critics, some of whom have produced controversial estimates that millions may have been improperly enrolled, say that’s behind the decline. They have previously blamed the more generous subsidies for unauthorized enrollments or ACA plan-switching by commission-seeking brokers.

States that run their own ACA marketplaces, however, reported little or no such unauthorized switching. Relative to the federal marketplace, the state-based ACA platforms employ additional safeguards to prevent brokers from accessing consumers’ coverage without authorization.

Among consumers not returning to the marketplace, the main reason is cost, said Mila Kofman, executive director of the DC Health Benefit Exchange Authority, which runs the district’s ACA marketplace.

“When we looked at who these folks are, half are small-business owners,” Kofman said. “They are not folks committing fraud.”

Lower Premiums, Higher Deductibles

Rather than sticking with automatic reenrollment, existing customers in many states shifted sharply into lower-priced “bronze” plans that come with higher deductibles than silver, gold, and platinum plans.

California saw 73% of renewing members who switched plans move to a bronze plan, up from 27% at the same time last year, the State Marketplace Network reported. In Maine, bronze enrollment now represents almost 60% of all plans purchased.

People are “looking at what works in their monthly budget, looking for that lower premium,” said Stacey Pogue, a senior research fellow at the Center on Health Insurance Reforms at Georgetown University. “Some might be crossing their fingers that they won’t need to meet their deductible.”

On average, bronze plans have an annual deductible of $7,500. All ACA plans are required to cover certain preventive services — such as some vaccinations, cancer screenings, and other tests — without a copayment or deductible, but most everything else is covered only after an annual deductible is met.

High deductibles can lead some patients to avoid seeking medical care, Hempstead said.

“People are terrified to use their care,” she said. “They may delay something until it’s more serious.”

She added that medical providers, including hospitals and doctors, are bracing for an increase in the number of insured patients who can’t afford to pay their deductibles.

“Everyone is anticipating that hospitals will have to give out more charity care, which will hurt their bottom lines and might lead them to have to lay off people or close or reduce services,” she said.

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Warning patients could deter them from signing up for a program called Emergency Medicaid, through which the government reimburses hospitals for the cost of emergency treatment for immigrants who are ineligible for standard Medicaid coverage.

But if hospitals don’t disclose that the patients’ information is shared with federal law enforcement, they might not know that their medical coverage puts them at risk of being located by Immigration and Customs Enforcement.

“If hospitals tell people that their Emergency Medicaid information will be shared with ICE, it is foreseeable that many immigrants would simply stop getting emergency medical treatment,” said Leonardo Cuello, a research professor at Georgetown University’s Center for Children and Families. “Half of the Emergency Medicaid cases are for the delivery of U.S. citizen babies. Do we want these mothers avoiding the hospital when they go into labor?”

For more than a decade, hospitals and states have assured patients that their personal information, including their home addresses and immigration status, would not be shared with immigration enforcement officials when they apply for federal health care coverage. A 2013 ICE policy memo guaranteed the agency would not use information from health coverage applications for enforcement activities.

But that changed last year, after President Donald Trump returned to the White House and ordered one of the most aggressive immigration crackdowns in recent history. His administration began funneling data from a variety of government agencies to the Department of Homeland Security, including tax information filed with the IRS.

The Centers for Medicare & Medicaid Services, part of the Department of Health and Human Services, agreed last spring to give ICE officials direct access to a Medicaid database that includes enrollees’ addresses and citizenship status.

Twenty-two states, all but one led by Democratic governors, sued to block the Medicaid data-sharing agreement, which the administration did not formally announce until a federal judge ordered it to do so last summer. The judge ruled in December that in those states, ICE could access information in the Medicaid database only about people in the country unlawfully. KFF Health News contacted more than a dozen hospitals and hospital associations in states and cities that have been targets of ICE sweeps. Many declined to comment on whether they’ve updated their disclosure policies after the ruling.

Of those that responded, none said they are directly warning patients that their personal information may be shared with ICE when they apply for Medicaid coverage.

“We do not provide legal advice about federal government data-sharing between agencies,” Aimee Jordon, a spokesperson for M Health Fairview, a Minneapolis-based hospital system, said in an email to KFF Health News. “We encourage patients with questions about benefits or immigration-related concerns to seek guidance from appropriate state resources and qualified legal counsel.”

Information on Applications

Some states’ Emergency Medicaid applications specifically ask for a patient’s immigration status — and still assure people that their information will be kept secure and out of the hands of immigration enforcement officials.

For example, as of Feb. 3, California’s application still included language advising applicants that their immigration information is “confidential.”

“We only use it to see if you qualify for health insurance,” states the 44-page form, which the state’s Medicaid program, known as Medi-Cal, posted on social media in January.

California Department of Health Care Services spokesperson Anthony Cava said in a statement that the agency, which oversees Medi-Cal, will “ensure that Californians have accurate information on the privacy of their data, including by revising additional publications as necessary.”

Until late January, Utah’s Medicaid website also claimed its Emergency Medicaid program did not share its information with immigration officials. After KFF Health News contacted the state agency, Kolbi Young, a spokesperson, said Jan. 23 that the language would be taken down immediately. It was removed that day.

Oregon Health & Science University, a hospital system based in Portland, offers immigrant patients a Q&A document developed by the state Medicaid program for those with concerns about how their information might be used. The document does not directly say that Medicaid enrollees’ information is shared with ICE officials.

Hospitals rely on Emergency Medicaid to reimburse them for treating people who would qualify for Medicaid if not for their citizenship status — those in the country illegally and lawfully present immigrants, such as those with a student or work visa. The coverage pays only for emergency medical and pregnancy care. Typically, hospital representatives help patients apply while they are still in the medical facility.

The main Medicaid program, which covers a much broader range of services for over 77 million low-income and disabled people, does not cover people living in the country illegally.

Examining Emergency Medicaid enrollment is the most obvious way, then, for deportation officials to identify immigrants, including those who might not reside in the U.S. lawfully.

HHS spokesperson Rich Danker said in an email that CMS — which oversees Medicaid, a joint state-federal program — is sharing data with ICE after the judge’s ruling. But he would not answer how the agency is ensuring it is sharing information only on people who are not lawfully present, as the judge required.

With ICE now getting direct access to the personal information of millions of Medicaid enrollees, hospitals — while “definitely in a tough position” — should be up-front about the changes, said Sarah Grusin, an attorney at the National Health Law Program, an advocacy group.

“They need to be telling people that the judge has permitted sharing of information, including their address, for people who are not lawfully residing,” she said. “Once this information is submitted, you can’t protect it from disclosure at this point.”

Grusin said she advises families to weigh the importance of seeking medical care against the risk of having their information shared with ICE.

“We want to give candid, honest information even if it means the decision people have to make is really hard,” she said.

Those who have previously enrolled in Medicaid or can easily search their address online should assume that immigration officials already have their information, she added.

Emergency Medicaid

Emergency Medicaid coverage was established in the mid-1980s, when a federal law began requiring hospitals to treat and stabilize all patients who show up at their doors with a life-threatening condition.

Federal government spending on Emergency Medicaid accounted for nearly $4 billion in 2023, or about 0.4% of total federal spending on Medicaid.

States send monthly reports to the federal government with detailed information about who enrolls in Medicaid and what services they receive. The judge’s ruling in December limited what CMS can share with ICE to only basic information, including addresses, about Medicaid enrollees in the 22 states that sued over the data-sharing arrangement. ICE officials are not supposed to access information about the medical services people receive, per the judge’s order.

The judge also prohibited the agency from sharing the data of U.S. citizens or lawfully present immigrants from those states.

Deportation officials have access to personal Medicaid information of all enrollees in the remaining 28 states.

The federal health agency has not clarified how it is ensuring that certain states’ information on citizens and legal residents is not shared with ICE. But Medicaid experts say it would be nearly impossible for the agency to separate the data, raising questions about whether the Trump administration is complying with the judge’s order.

The Trump administration’s efforts to deport immigrants living in the country illegally have had implications on immigrant families seeking care. About a third of adult immigrants reported skipping or postponing health care in the past year, according to a KFF/New York Times poll released in November. (KFF is a health information nonprofit that includes KFF Health News.)

Bethany Pray, the chief legal and policy officer at the Colorado Center on Law and Policy, warned that sharing Medicaid data directly with deportation officials will force even tougher decisions upon some families.

“This is very concerning,” Pray said. “People should not have to choose between giving birth in a hospital and wondering if that means they risk deportation.”

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A week earlier, immigration agents had grabbed Julio César Peña from his front yard in Glendale, California. Now, he was in a hospital after suffering a ministroke. He was shackled to the bed by his hand and foot, he told Romero, and agents were in the room, listening to the call. He was scared he would die and wanted his wife there.

“What hospital are you at?” Romero asked.

“I can’t tell you,” he replied.

Viridiana Chabolla, Peña’s attorney, couldn’t get an answer to that question, either. Peña’s deportation officer and the medical contractor at the Adelanto ICE Processing Center refused to tell her. Exasperated, she tried calling a nearby hospital, Providence St. Mary Medical Center.

“They said even if they had a person in ICE custody under their care, they wouldn’t be able to confirm whether he’s there or not, that only ICE can give me the information,” Chabolla said. The hospital confirmed this policy to KFF Health News.

Family members and attorneys for patients hospitalized after being detained by federal immigration officials said they are facing extreme difficulty trying to locate patients, get information about their well-being, and provide them emotional and legal support. They say many hospitals refuse to provide information or allow contact with these patients. Instead, hospitals allow immigration officers to call the shots on how much — if any — contact is allowed, which can deprive patients of their constitutional right to seek legal advice and leave them vulnerable to abuse, attorneys said.

Hospitals say they are trying to protect the safety and privacy of patients, staff, and law enforcement officials, even while hospital employees in Los Angeles, Minneapolis, and Portland, Ore., cities where Immigration and Customs Enforcement has conducted immigration raids, say it’s made their jobs difficult. Hospitals have used what are sometimes called blackout procedures, which can include registering a patient under a pseudonym, removing their name from the hospital directory, or prohibiting staff from even confirming that a patient is in the hospital.

“We’ve heard incidences of this blackout process being used at multiple hospitals across the state, and it’s very concerning,” said Shiu-Ming Cheer, the deputy director of immigrant and racial justice at the California Immigrant Policy Center, an advocacy group.

Some Democratic-led states, including California, Colorado, and Maryland, have enacted legislation that seeks to protect patients from immigration enforcement in hospitals. However, those policies do not address protections for people already in ICE custody.

More Detainees Hospitalized

Peña is among more than 350,000 people arrested by federal immigration authorities since President Donald Trump returned to the White House. As arrests and detentions have climbed, so too have reports of people taken to hospitals by immigration agents because of illness or injury — due to preexisting conditions or problems stemming from their arrest or detention.

ICE has faced criticism for using aggressive and deadly tactics, as well as for reports of mistreatment and inadequate medical care at its facilities. Sen. Adam Schiff (D-Calif.) told reporters at a Jan. 20 news conference outside a detention center he visited in California City that he spoke to a diabetic woman held there who had not received treatment in two months.

While there are no publicly available statistics on the number of people sick or injured in ICE detention, the agency’s news releases point to 32 people who died in immigration custody in 2025. Six more have died this year.

The Department of Homeland Security, which oversees ICE, did not respond to a request for information about its policies or Peña’s case.

According to ICE’s guidelines, people in custody should be given access to a telephone, visits from family and friends, and private consultation with legal counsel. The agency can make administrative decisions, including about visitation, when a patient is in the hospital, but should defer to hospital policies on contacting next of kin when a patient is seriously ill, the guidelines state.

Asked in detail about hospital practices related to patients in immigration custody and whether there are best practices that hospitals should follow, Ben Teicher, a spokesperson for the American Hospital Association, declined to comment.

David Simon, a spokesperson for the California Hospital Association, said that “there are times when hospitals will — at the request of law enforcement — maintain confidentiality of patients’ names and other identifying characteristics.”

Although policies vary, members of the public can typically call a hospital and ask for a patient by name to find out whether they’re there, and often be transferred to the patient’s room, said William Weber, an emergency physician in Minneapolis and medical director for the Medical Justice Alliance, which advocates for the medical needs of people in law enforcement custody. Family members and others authorized by the patient can visit. And medical staff routinely call relatives to let them know a loved one is in the hospital, or to ask for information that could help with their care.

But when a patient is in law enforcement custody, hospitals frequently agree to restrict this kind of information sharing and access, Weber said. The rationale is that these measures prevent unauthorized outsiders from threatening the patient or law enforcement personnel, given that hospitals lack the security infrastructure of a prison or detention center. High-profile patients such as celebrities sometimes also request this type of protection.

Several attorneys and health care providers questioned the need for such restrictions. Immigration detention is civil, not criminal, detention. The Trump administration says it’s focused on arresting and deporting criminals, yet most of those arrested have no criminal conviction, according to data compiled by the Transactional Records Access Clearinghouse and several news outlets.

Taken Outside His Home

According to Peña’s wife, Romero, he has no criminal record. Peña came to the United States from Mexico in sixth grade and has an adult son in the U.S. military. The 43-year-old has terminal kidney disease and survived a heart attack in November. He has trouble walking and is partially blind, his wife said. He was detained Dec. 8 while resting outside after coming home from dialysis treatment.

Initially, Romero was able to find her husband through the ICE Online Detainee Locator System. She visited him at a temporary holding facility in downtown Los Angeles, bringing him his medicines and a sweater. She then saw he’d been moved to the Adelanto detention center. But the locator did not show where he was after he was hospitalized.

When she and other relatives drove to the detention facility to find him, they were turned away, she said. Romero received occasional calls from her husband in the hospital but said they were less than 10 minutes long and took place under ICE surveillance. She wanted to know where he was so she could be at the hospital to hold his hand, make sure he was well cared for, and encourage him to stay strong, she said.

Shackling him and preventing him from seeing his family was unfair and unnecessary, she said.

“He’s weak,” Romero said. “It’s not like he’s going to run away.”

ICE guidelines say contact and visits from family and friends should be allowed “within security and operational constraints.” Detainees have a constitutional right to speak confidentially with an attorney. Weber said immigration authorities should tell attorneys where their clients are and allow them to talk in person or use an unmonitored phone line.

One of his clients was Bayron Rovidio Marin, a car wash worker injured during a raid in August. Immigration agents surveilled him for over a month at Harbor-UCLA Medical Center, a county-run facility, without charging him.

In November, the Los Angeles County Board of Supervisors voted to curb the use of blackout policies for patients under civil immigration custody at county-run hospitals. In a statement, Arun Patel, the chief patient safety and clinical risk management officer for the Los Angeles County Department of Health Services, said the policies are designed to reduce safety risks for patients, doctors, nurses, and custody officers.

“In some situations, there may be concerns about threats to the patient, attempts to interfere with medical care, unauthorized visitors, or the introduction of contraband,” Patel said. “Our goal is not to restrict care but to allow care to happen safely and without disruption.”

Leaving Patients Vulnerable

Thompson-Lleras said he’s concerned that hospitals are cooperating with federal immigration authorities at the expense of patients and their families and leaving patients vulnerable to abuse.

“It allows people to be treated suboptimally,” Thompson-Lleras said. “It allows people to be treated on abbreviated timelines, without supervision, without family intervention or advocacy. These people are alone, disoriented, being interrogated, at least in Bayron’s case, under pain and influence of medication.”

Such incidents are alarming to hospital workers. In Los Angeles, two health care professionals who asked not to be identified by KFF Health News, out of concern for their livelihoods, said that ICE and hospital administrators, at public and private hospitals, frequently block staff from contacting family members for people in custody, even to find out about their health conditions or what medications they’re on. That violates medical ethics, they said.

Blackout procedures are another concern.

“They help facilitate, whether intentionally or not, the disappearance of patients,” said one worker, a physician for the county’s Department of Health Services and part of a coalition of concerned health workers from across the region.

At Legacy Emanuel Medical Center in Portland, nurses publicly expressed outrage over what they saw as hospital cooperation with ICE and the flouting of patient rights. Legacy Health has sent a cease and desist letter to the nurses’ union, accusing it of making “false or misleading statements.”

“I was really disgusted,” said Blaire Glennon, a nurse who quit her job at the hospital in December. She said numerous patients were brought to the hospital by ICE with serious injuries they sustained while being detained. “I felt like Legacy was doing massive human rights violations.”

Handcuffed While Unconscious

Two days before Christmas, Chabolla, Peña’s attorney, received a call from ICE with the answer she and Romero had been waiting for. Peña was at Victor Valley Global Medical Center, about 10 miles from Adelanto, and about to be released.

Excited, Romero and her family made the two-hour-plus drive from Glendale to the hospital to take him home.

When they got there, they found Peña intubated and unconscious, his arm and leg still handcuffed to the hospital bed. He’d had a severe seizure on Dec. 20, but no one had told his family or legal team, his attorney said.

Tim Lineberger, a spokesperson for Victor Valley Global Medical Center’s parent company, KPC Health, said he could not comment on specific patient cases, because of privacy protections. He said the hospital’s policies on patient information disclosure comply with state and federal law.

Peña was finally cleared to go home on Jan. 5. No court date has been set, and his family is filing a petition to adjust his legal status based on his son’s military service. For now, he still faces deportation proceedings.

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Federal officials in May 2023 declared an end to the national covid pandemic. But more than two years later, a growing body of research continues to reveal information about the virus and its ability to cause harm long after initial infections resolve, even in some cases when symptoms were mild.

The discoveries raise fresh concerns about the Trump administration’s covid policies, researchers say. While some studies show covid vaccines offer protective benefits against longer-term health effects, the Department of Health and Human Services has drastically limited recommendations about who should get the shot. The administration also halted Biden-era contracts aimed at developing more protective covid vaccines.

The federal government is curtailing such efforts just as researchers call for more funding and, in some cases, long-term monitoring of people previously infected.

“People forget, but the legacy of covid is going to be long, and we are going to be learning about the chronic effects of the virus for some time to come,” said Michael Osterholm, an epidemiologist who directs the University of Minnesota’s Center for Infectious Disease Research and Policy.

The Trump administration said that the covid vaccine remains available and that individuals are encouraged to talk with their health providers about what is best for them. The covid vaccine and others on the schedule of the Centers for Disease Control and Prevention remain covered by insurance so that individuals don’t need to pay out-of-pocket, officials said.

“Updating CDC guidance and expanding shared clinical decision-making restores informed consent, centers parents and clinicians, and discourages ‘one size fits all’ policies,” said HHS spokesperson Emily Hilliard.

Although covid has become less deadly, because of population immunization and mutations making the virus less severe, researchers say the politicization around the infection is obscuring what science is increasingly confirming: covid’s potential to cause unexpected, possibly chronic health issues. That in turn, these scientists say, drives the need for more, rather than less, research, because over the long term, covid could have significant economic and societal implications, such as higher health care costs and more demands on social programs and caregivers.

The annual average burden of the disease’s long-term health effects is estimated at $1 trillion globally and $9,000 per patient in the U.S., according to a report published in November in the journal NPJ Primary Care Respiratory Medicine. In this country, the annual lost earnings are estimated to be about $170 billion.

One study estimates that the flu resulted in $16 billion in direct health costs and $13 billion in productivity losses in the 2023-2024 season, according to a Dec. 30 report in medRxiv, an online platform that publishes work not yet certified by peer review.

Covid’s Growing Reach

Much has been learned about covid since the virus emerged in 2019, unleashing a pandemic that the World Health Organization reports has killed more than 7 million people. By the spring of 2020, the term “long covid” had been coined to describe chronic health problems that can persist post-infection.

More recent studies show that infection by the virus that causes covid, SARS-CoV-2, can result in heightened health risks months to more than a year later.

For example, researchers following children born to mothers who contracted the virus while pregnant have discovered they may have an increased risk for autism, delayed speech and motor development, or other neurodevelopmental challenges.

Another study found babies exposed to covid in utero experienced accelerated weight gain in their first year, a possible harbinger of metabolic issues that could later carry an increased risk for cardiovascular disease.

These studies suggest avoiding severe covid in pregnancy may reduce risk not just during pregnancy but for future generations. That may be another good reason to get vaccinated when pregnant.

“There are other body symptoms apart from the developing fetal brain that also may be impacted,” said Andrea Edlow, an associate professor of obstetrics, gynecology, and reproductive biology at Harvard Medical School who was involved in both studies. “We definitely need more research.”

Epidemiologists point to some specific, emerging challenges.

A U.K. study in the New England Journal of Medicine found people who fully recovered from mild covid infections experienced a cognitive deficit equal to a three-point drop in IQ. Among the more than 100,000 participants, deficits were greater in people who had persistent symptoms and reached the equivalent of a nine-point IQ drop for individuals admitted to intensive care.

Ziyad Al-Aly, a clinical epidemiologist who has studied longer-term health effects from covid, did the math. He estimated covid may have increased the number of adults in the U.S. with an IQ of less than 70 from 4.7 million to 7.5 million — a jump of 2.8 million adults dealing with “a level of cognitive impairment that requires significant societal support,” he wrote.

“People get covid-19, some people do fine and bounce back, but there are people who start experiencing problems with memory, cognition, and fuzzy brain,” he said. “Even people with mild symptoms. They might not even be aware.”

Diane Yormark, 67, of Boca Raton, Florida, can relate. She got covid in 2022 and 2023. The second infection left her with brain fog and fatigue.

“I felt like if you had a little bit too much wine the night before and you’re out of it,” said Yormark, a retired copywriter, who said the worst of her symptoms lasted for about three months after the infection. “Some of the fog has lifted. But do I feel like myself? Not like I was.”

Data from more than a dozen studies suggests covid vaccines can help reduce risk of severe infection as well as longer-lasting health effects, although researchers say more study is needed.

But vaccination rates remain low in the U.S., with only about 17% of the adult population reporting that they got the updated 2025-2026 shot as of Jan. 16, based on CDC data.

Trump administration officials led by Health and Human Services Secretary Robert F. Kennedy Jr. have reduced access to covid vaccines despite the lack of any new, substantiated evidence of harm. Though the shots were a hallmark achievement of the first Trump administration, which led the effort for their development, Kennedy has said without evidence that they are “the deadliest vaccine ever made.”

In May he said on X that the CDC would stop recommending covid shots for healthy children and pregnant women, citing a lack of clinical data. The Food and Drug Administration has since issued new guidelines limiting the vaccine to people 65 or older and individuals 6 months or older with at least one risk factor, though many states continue to make them more widely available.

The Trump administration also halted almost $500 million in funding for mRNA-based vaccines. Administration officials and a number of Republicans question the safety of the Nobel Prize-winning technology — heralded for the potential to treat many diseases beyond covid — even though clinical trials with tens of thousands of volunteers were performed before the covid mRNA vaccines were made available to the public.

And numerous studies, including new research in 2025, show covid vaccine benefits include a reduction in the severity of disease, although the protective effects wane over time.

Following the Findings

Researchers say more and broader support is important because much remains unknown about covid and its impact on the body.

The growing awareness that, even in mild covid cases, the possibility exists for longer-term, often undetected organ damage also warrants more examination, researchers say. A study published this month in eBioMedicine found people with neurocognitive issues such as changes in smell or headaches after infection had significant levels of a protein linked to Alzheimer’s in their blood plasma. EBioMedicine is a peer-reviewed, open-access journal published by The Lancet.

In the brain, the virus leads to an immune response that triggers inflammation, can damage brain cells, and can even shrink brain volume, according to research on imaging studies that was published in March 2022 in the journal Nature.

An Australian study of advanced brain images found significant alterations even among people who had already recovered from mild infections — a possible explanation for cognitive deficits that may persist for years. Lead study author Kiran Thapaliya said the research suggests the virus “may leave a silent, lasting effect on brain health.”

Al-Alay agreed.

“We don’t know what will happen to people 10 years down the road,” he said. “Inflammation of the brain is not a good thing. It’s absolutely not a good thing.”

That inflammatory response has also been linked to blood clots, arrhythmias, and higher risk of cardiovascular issues, even following a mild infection.

A University of Southern California study published in October 2024 in the journal Arteriosclerosis, Thrombosis, and Vascular Biology found the risk for a major cardiac event remains elevated nearly three years after covid infection. The findings held even for people who were not hospitalized.

“We were surprised to see the effects that far out” regardless of individual heart disease history, said James R. Hilser, the study’s lead author and a postdoctoral fellow at the UCLA David Geffen School of Medicine.

Covid can also reactivate cancer cells and trigger a relapse, according to research published in July in the journal Nature. Researchers found that the chance of dying from cancer among cancer survivors was higher among people who’d had covid, especially in the year after being infected. There was nearly a twofold increase in cancer mortality in those who tested positive compared with those who tested negative.

The potential of the covid virus to affect future generations is yielding new findings as well. Australian researchers looked at male mice and found that those who had been infected with and then recovered from covid experienced changes to their sperm that altered their offspring’s behavior, causing them to exhibit more anxiety.

Meanwhile, many people are now living — and struggling — with the virus’ after-effects.

Dee Farrand, 57, of Marana, Arizona, could once run five miles and was excelling at her job in sales. She recovered from a covid infection in May 2021.

Two months later, her heart began to beat irregularly. Farrand underwent a battery of tests at a hospital. Ultimately, the condition became so severe she had to go on supplemental oxygen for two years.

Her cognitive abilities declined so severely she couldn’t read, because she’d forget the first sentence after reading the second. She also had to leave herself reminders that she is allergic to shrimp or that she likes avocados. She said she lost her job and returned to her previous occupation as a social worker.

“I was the person who is like the Energizer bunny and all of a sudden I’d get so tired getting dressed that I had to go back to bed,” Farrand said.

While she is better, covid has left a mark. She said she’s not yet able to run the five miles she used to do without any problems.

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Finally, after decades of advocacy, the Biden administration in 2023 tackled the problem of perennial understaffing of long-term care facilities. Officials backed a Medicare regulation that would mandate at least 3.48 hours of care from nurses and aides per resident, per day, and would require a registered nurse on-site 24 hours a day, seven days a week.

The mandated hours were lower than supporters hoped for, said Hunter, who directs Washington state’s long-term care ombudsman program. But “I’m a pragmatic person, so I thought, this is a good start,” she said. “It would be helpful, for enforcement, to have a federal law.”

In 2024, when the Centers for Medicare & Medicaid Services adopted the standards, advocates celebrated. But industry lawsuits soon blocked most of the rule, with two federal district courts finding that Medicare had exceeded its regulatory authority.

And after the 2024 elections, Hunter said, “I was concerned about the changing of the guard.” Her concerns proved well founded.

In July, as part of Republicans’ One Big Beautiful Bill Act, Congress prohibited Medicare from implementing the staffing standards before 2034. Last month, CMS repealed the standards altogether. They never took effect.

“It was devastating,” Hunter said.

As with environmental law and consumer protections, the Trump administration’s enthusiasm for deregulation has undone long-sought rules to improve care for the aged. And it has introduced a Medicare experiment for prior authorizations, now getting underway in six states, that has alarmed advocates, congressional Democrats, and a good number of older Americans.

Taken together, the moves will affect many of the facilities and workers providing care and introduce complications in health coverage in several states.

On the nursing home front, “it’s clear CMS has no interest in ensuring adequate staffing,” said Sam Brooks, the director of public policy for the National Consumer Voice for Quality Long-Term Care.

“They’re repealing a regulation that could have saved 13,000 lives a year,” he added, citing an analysis by University of Pennsylvania researchers.

Industry groups argued that nursing homes, with high rates of staff turnover, were already struggling to fill vacancies.

The staffing mandate “was requiring nursing homes to hire an additional 100,000 caregivers that simply don’t exist,” said Holly Harmon, a senior vice president at the American Health Care Association.

The organization had brought one of the suits that largely vacated the rule. “Facilities would have been forced to limit admissions or downsize to comply with the requirements, or close altogether,” Harmon said.

For supporters, the action is now likely to shift to updating requirements in 35 states, along with the District of Columbia, that have already established some nursing home staff standards, and to developing them in those that haven’t.

Rules for Home Help

A second rescinded regulation, this one more unexpected, brought about upheaval in July, when the Labor Department announced a return to a policy excluding home care workers from the federal Fair Labor Standards Act.

Some history: Dating back to the New Deal, the FLSA mandated that workers receive the federal minimum wage (currently $7.25 an hour) and overtime pay. It exempted most “domestic service workers” until 1975, when a new Labor Department regulation included them — with the exception of home care workers.

“There was a misinterpretation of home care work as being casual, nonprofessional, non-skilled,” the equivalent of teenage babysitting, said Kezia Scales, a vice president at PHI, a national research and advocacy organization. “Just someone popping into your mother’s house now and then and keeping her company.”

For almost 40 years, workers and their supporters lobbied to change the rule, seeing it as a contributor to the low wages and meager benefits of a swiftly growing workforce, one made up primarily of women and minority groups, with many immigrants.

In 2013, the Labor Department responded with a rule that brought home care workers under the labor act, entitled to minimum wage, time and a half for overtime work, and payment for travel time between clients.

After industry lawsuits failed to overturn it, “everything settled down,” Scales said. “It was in place successfully for a decade.”

Home care workers brought hundreds of compliance complaints annually. In 87% of them, the Labor Department found violations of the labor act, according to a 2020 Government Accountability Office report.

Since 2013, home care agencies have paid about $158 million in back wages, PHI has calculated.

Then in July, the Labor Department abruptly announced that it would return to the 1975 regulations and stop enforcing the 2013 rule, which it said “had negative effects on the ground” and hindered consumer access to care.

The agencies employing most home care workers, primarily funded through Medicaid, would agree. “Many workers never got any benefit from this,” said Damon Terzaghi, a vice president at the National Alliance for Care at Home.

“States made a lot of moves to essentially absolve themselves of any responsibility,” he said. A 2020 federal report, for example, found that 16 states had capped Medicaid-covered home care hours at 40, thus averting overtime payment.

The alliance, which estimates that the number of impacted agencies and businesses has declined by 30% since 2013, supported the rescission. Scales, who hopes for congressional action, called it “a shocking step backward.”

Where they concur is that the United States has never really committed to sufficiently funding long-term care at home. With the July legislation setting the stage for a $914 billion cut to Medicaid over the coming decade, that seems unlikely to change anytime soon.

Medicare’s AI Referee

Beyond rolling back policies for care of the aged, the Trump administration has established a pilot program to introduce one to traditional Medicare: prior authorization, using artificial intelligence and machine learning technologies.

Touting it as a boon to taxpayers, Medicare calls it WISeR — Wasteful and Inappropriate Service Reduction.

Prior authorization, in which private insurers review proposed treatments before agreeing to pay for them, is widely used in Medicare Advantage plans despite its unpopularity with patients, doctors, and health care organizations. It has rarely been used in traditional Medicare.

This month, however, WISeR debuts in six states (Arizona, New Jersey, Ohio, Oklahoma, Texas, Washington) in a six-year trial to determine whether review by tech companies can reduce costs and improve efficiency, while maintaining or improving quality of care.

Initially, WISeR targets 17 items and services that CMS said “historically have had a higher risk of waste, fraud and abuse.” The list includes knee arthroscopy for arthritis, electrical nerve stimulation devices for several conditions, and treatment for impotence.

The pilot program excludes emergency services and inpatient hospital care, or care where delay poses “a substantial risk.” Algorithmic denials will trigger review by “an appropriately licensed human clinician.” The tech companies get “a share of averted expenditures.”

“It injects some of the worst of Medicare Advantage into traditional Medicare,” said David Lipschutz, co-director of the Center for Medicare Advocacy. The six vendors that approve or reject treatments “have a financial stake in the outcomes,” he said, and therefore “an incentive to deny care.”

Moreover, the CMS Innovation Center overseeing the pilot could theoretically bypass Congress and expand prior authorization to include more medical services in more states.

The agency did not respond to questions about what kind of human clinicians would review denials, except to say that they would have “relevant experience” and that tech companies would be “financially penalized for inappropriate denials, high appeal rates or poor performance.”

It plans an “independent, federally funded evaluation” and will release public reports annually.

Democrats in Congress have introduced bills in both houses to repeal WISeR. “We should be reducing red tape in Medicare, not creating new hurdles that second-guess health care providers,” said Rep. Suzan DelBene of Washington, one of the bill’s sponsors.

For now, though, WISeR has opened for business, receiving prior authorization requests through its electronic portals.

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

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“It’s just the cost of doing business with our borders being somewhat porous for global and international travel,” Abraham said. “We have these communities that choose to be unvaccinated. That’s their personal freedom.”

Infections from other countries, however, accounted for only about 10% of measles cases detected since Jan. 20, 2025, the official start of the deadly measles outbreak in West Texas, which spread to other states and Mexico. The rest were acquired domestically. This marks a change since the U.S. eliminated measles in 2000. Measles occasionally popped up in the U.S. from people infected abroad, but the cases rarely sparked outbreaks, because of extremely high rates of vaccination. Two doses of the measles, mumps, and rubella vaccine strongly prevent infection and halt the virus’s spread.

To maintain its measles elimination status, the U.S. must prove that the virus has not circulated continuously in the nation for a year, between Jan. 20, 2025, and Jan. 20, 2026. To answer the question, scientists are examining whether the major outbreaks in South Carolina, Utah, Arizona, and Texas were linked.

Health officials confirmed that the main measles virus strain in each of these outbreaks is D8-9171. But because this strain also occurs in Canada and Mexico, CDC scientists are now analyzing the entire genomes of measles viruses — about 16,000 genetic letters long — to see whether those in the United States are more closely related to one another than to those in other countries.

The CDC expects to complete its studies within a couple of months and make the data public. Then the Pan American Health Organization, which oversees the Americas in partnership with the World Health Organization, will decide whether the U.S. will lose its measles elimination status. And that would mean that costly, potentially deadly, and preventable measles outbreaks could become common again.

“When you hear somebody like Abraham say ‘the cost of doing business,’ how can you be more callous,” said pediatrician and vaccine specialist Paul Offit, in an online discussion hosted by the health blog Inside Medicine on Jan. 20. “Three people died of measles last year in this country,” Offit added. “We eliminated this virus in the year 2000 — eliminated it. Eliminated circulation of the most contagious human infection. That was something to be proud of.”

Abraham said vaccination remains the most effective way to prevent measles but that parents must have the freedom to decide whether to vaccinate their children. Several states have loosened school vaccine requirements since 2020, and vaccine rates have dropped. A record rate of kindergartners, representing about 138,000 children, obtained vaccine exemptions for the 2024-25 school year.

Information on vaccines has been muddied by Health and Human Services Secretary Robert F. Kennedy Jr., who previously founded an anti-vaccine organization. He has undermined vaccines throughout his tenure. On national television, he has repeated scientifically debunked rumors that vaccines may cause autism, brain swelling, and death.

Jennifer Nuzzo, director of the Pandemic Center at Brown University, disparaged the Trump administration’s focus on finding genetic technicalities that may spare the country’s measles-free status. “This is the wrong thing to pay attention to. Our attention has to be on stopping the outbreaks,” she said.

“If we keep our status, it should be because we have stopped the spread of measles,” she said. “It’s like they’re trying to be graded on a curve.”

The Trump administration impeded the CDC’s ability to assist West Texas during the first critical weeks of its outbreak and slowed the release of federal emergency funds, according to KFF Health News investigations. However, the agency stepped up its activity last year, providing local health departments with measles vaccines, communication materials, and testing. Abraham said HHS would give South Carolina $1.5 million to respond to its outbreak, which began nearly four months ago and had reached 646 cases as of Jan. 20.

If the CDC’s genomic analyses show that last year’s outbreaks resulted from separate introductions from abroad, political appointees will probably credit Kennedy for saving the country’s status, said Demetre Daskalakis, a former director of the CDC’s national immunization center, who resigned in protest of Kennedy’s actions in August.

And if studies suggest the outbreaks are linked, Daskalakis predicted, the administration will cast doubt on the findings and downplay the reversal of the country’s status: “They’ll say, who cares.”

Indeed, at the briefing, Abraham told a reporter from Stat that a reversal in the nation’s status would not be significant: “Losing elimination status does not mean that the measles would be widespread.”

Data shows otherwise. Case counts last year were the highest since 1991, before the government enacted vaccine policies to ensure that all children could be protected with measles immunization.

Lauren Sausser contributed reporting.

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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Then 25 years old and six months pregnant, she drove herself to the emergency room in Ronan, Montana, on the Flathead Indian Reservation, where an ambulance transferred her to a larger hospital 60 miles away in Missoula. Once she arrived, the staff couldn’t detect her baby’s heartbeat. Swaney began to bleed heavily. She delivered a stillborn baby and was hospitalized for several days. At one point, doctors told her to call her family. They didn’t expect her to survive.

“It certainly changed my life — the experience — but my life has not been a bad life,” she told KFF Health News.

Though her experiences were nearly 50 years ago, Swaney, a member of the Confederated Salish and Kootenai Tribes, said Native Americans continue to receive inadequate maternal care. The data appears to support that belief.

In 2024, the most recent year for which data for the population is available, Native American and Alaska Native people had the highest pregnancy-related mortality ratio among major demographic groups, according to the Centers for Disease Control and Prevention.

In response to this disparity, Native organizations, the CDC, and some states are working to boost tribal participation in state maternal mortality review committees to better track and address pregnancy-related deaths in their communities. Native organizations are also considering ways tribes could create their own committees.

State maternal mortality review committees investigate deaths that occur during pregnancy or within a year after pregnancy, analyze data, and issue policy recommendations to lower death rates.

According to 2021 CDC data, compiled from 46 maternal mortality review committees, 87% of maternal deaths in the U.S. were deemed preventable. Committees reported that most, if not all, deaths among Native American and Alaska Native people were considered preventable.

Our matriarchs, our moms, are what carries a nation forward.

Kim Moore-Salas

State committees have received federal money through the Preventing Maternal Deaths Act, which President Donald Trump signed in 2018.

But the money is scheduled to dry up on Jan. 31, when the short-term spending bill that ended the government shutdown expires.

Funding for the committees is included in the Labor, Health and Human Services, Education, and Related Agencies appropriations bill for fiscal year 2026. That bill must be approved by the House, Senate, and president to take effect.

Native American leaders said including members of their communities in maternal mortality review committee activities is an important step in addressing mortality disparities.

In 2023, tribal leaders and federal officials met to discuss four models: a mortality review committee for each tribe, a committee for each of the 12 Indian Health Service administrative regions, a national committee to review all Native American maternal deaths, and the addition of Native American subcommittees to state committees.

Whatever the model, tribal sovereignty, experience, and traditional knowledge are important factors, said Kim Moore-Salas, a co-chair of the Arizona Maternal Mortality Review Committee. She’s also the chairperson of the panel’s American Indian/Alaska Native mortality review subcommittee and a member of the Navajo Nation.

“Our matriarchs, our moms, are what carries a nation forward,” she said.

Mental health conditions and infection were the leading underlying causes of pregnancy-related death among Native American and Alaska Native women as of 2021, according to the CDC report analyzing data from 46 states.

The CDC found an estimated 68% of pregnancy-related deaths among Native American and Alaska Native people happened within a week of delivery to a year postpartum. The majority of those happened between 43 days and a year after birth.

The federal government has a responsibility under signed treaties to provide health care to the 575 federally recognized tribes in the U.S. through the Indian Health Service. Tribal members can receive limited services at no cost, but the agency is underfunded and understaffed.

A study published in 2024 that analyzed data from 2016 to 2020 found that approximately 75% of Native American and Alaska Native pregnant people didn’t have access to care through the Indian Health Service around the time of giving birth, meaning many likely sought care elsewhere. More than 90% of Native American and Alaska Native births occur outside of IHS facilities, according to the agency. For those who did deliver at IHS facilities, a 2020 report from the Department of Health and Human Services’ Office of Inspector General found that 56% of labor and delivery patients received care that did not follow national clinical guidelines.

The 2024 study’s authors also found that members of the population were less likely to have stable insurance coverage and more likely to have a lapse in coverage during the period close to birth than non-Hispanic white people.

Cindy Gamble, who is Tlingit and a tribal community health consultant for the American Indian Health Commission in Washington, has been a member of the state’s maternal mortality review panel for about eight years. In the time she’s been on the state panel, she said, its composition has broadened to include more people of color and community members.

The panel also began to include suicide, overdose, and homicide deaths in its data analysis and added racism and discrimination to the risk factors considered during its case review process.

Solutions need to be tailored to the tribe’s identity and needs, Gamble said.

“It’s not a one-size-fits-all,” Gamble said, “because of all the beliefs and different cultures and languages that different tribes have.”

Gamble’s tenure on the state committee is distinctive. Few states have tribal representation on maternal mortality review committees, according to the National Indian Health Board, a nonprofit organization that advocates for tribal health.

The National Council of Urban Indian Health is also working to increase the participation of Urban Indian health organizations, which provide care for Native American people who live outside of reservations, in state maternal mortality review processes. As of 2025, the council had connected Urban Indian health organizations to state review committees in California, Kansas, Oklahoma, and South Dakota.

Native leaders such as Moore-Salas find the current efforts encouraging.

“It shows that state and tribes can work together,” she said.

In March 2024, Moore-Salas became the first Native American co-chair of Arizona’s Maternal Mortality Review Committee. In 2025 she and other Native American members of the committee developed guidelines for the American Indian/Alaska Native subcommittee and reviewed the group’s first cases.

The subcommittee is exploring ways to make the data collection and analysis process more culturally relevant to their population, Moore-Salas said.

But it takes time for policy changes to create widespread change in the health of a population, Gamble said. Despite efforts around the country, other factors may hinder the pace of progress. For example, maternity care deserts are growing nationally, caused by rapid hospital and labor and delivery unit closures. Health experts have raised concerns that upcoming cuts to Medicaid will hasten these closures.

Despite her experience and the ongoing crisis among Native American and Alaska Native people, Swaney hopes for change.

She had a second complicated pregnancy soon after her stillbirth. She went into labor about three months early, and the doctors said her son wouldn’t live to the next morning. But he did, and he was transferred about 525 miles away from Missoula to the nearest advanced neonatal unit, in Salt Lake City.

Her son, Kelly Camel, is now 48. He has severe cerebral palsy and profound deafness. He lives alone but has caregivers to help with cooking and other tasks, said Swaney, 73.

He “has a good sense of humor. He’s kind to other people. We couldn’t ask for a more complete child.”

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).