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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The idea echoes a policy implemented during his first term, when Trump suggested that requiring hospitals to post their charges online could ease one of the most common gripes about the health care system — the lack of upfront prices. To anyone who’s gotten a bill three months after treatment only to find mysterious charges, the idea seemed intuitive.

“You’re able to go online and compare all of the hospitals and the doctors and the prices,” Trump said in 2019 at an event unveiling the price transparency policy.

But amid low compliance and other struggles in implementing the policy since it took effect in 2021, the available price data is sparse and often confusing. And instead of patients shopping for medical services, it’s mostly health systems and insurers using the little data there is, turning it into fodder for negotiations that determine what medical professionals and facilities get paid for what services.

“We use the transparency data,” said Eric Hoag, an executive at Blue Cross Blue Shield of Minnesota, noting that the insurer wants to make sure providers aren’t being paid substantially different rates. It’s “to make sure that we are competitive, or, you know, more than competitive against other health plans.”

Not all hospitals have fallen in line with the price transparency rules, and many were slow to do so. A study conducted in the policy’s first 10 months found only about a third of facilities had complied with the regulations. The federal Centers for Medicare & Medicaid Services notified 27 hospitals from June 2022 to May 2025 that they would be fined for lack of compliance with the rules.

The struggles to make health care prices available have prompted more federal action since Trump’s first effort. President Joe Biden took his own thwack at the dilemma, by requiring increased data standardization and toughening compliance criteria. And in early 2025, working to fulfill his promises to lower health costs, Trump tried again, signing a new executive order urging his administration to fine hospitals and doctors for failing to post their prices. CMS followed up with a regulation intended to up the fines and increase the level of detail required within the pricing data.

So far, “there’s no evidence that patients use this information,” said Zack Cooper, a health economist at Yale University.

In 2021, Cooper co-authored a paper based on data from a large commercial insurer. The researchers found that, on average, patients who need an MRI pass six lower-priced imaging providers on the way from their homes to an appointment for a scan. That’s because they follow their physician’s advice about where to receive care, the study showed.

Executives and researchers interviewed by KFF Health News also didn’t think opening the data would change prices in a big way. Research shows that transparency policies can have mixed effects on prices, with one 2024 study of a New York initiative finding a marginal increase in billed charges.

The policy results thus far seem to put a damper on long-held hopes, particularly from the GOP, that providing more price transparency would incentivize patients to find the best deal on their imaging or knee replacements.

These aspirations have been unfulfilled for a few reasons, researchers and industry insiders say. Some patients simply don’t compare services. But unlike with apples — a Honeycrisp and a Red Delicious are easy to line up side by side — medical services are hard to compare.

For one thing, it’s not as simple as one price for one medical stay. Two babies might be delivered by the same obstetrician, for example, but the mothers could be charged very different amounts. One patient might be given medications to speed up contractions; another might not. Or one might need an emergency cesarean section — one of many cases in medicine in which obtaining the service simply isn’t a choice.

And the data often is presented in a way that’s not useful for patients, sometimes buried in spreadsheets and requiring a deep knowledge of billing codes. In computing these costs, hospitals make “detailed assumptions about how to apply complex contracting terms and assess historic data to create a reasonable value for an expected allowed amount,” the American Hospital Association told the Trump administration in July 2025 amid efforts to boost transparency.

Costs vary because hospitals’ contracts with insurers vary, said Jamie Cleverley, president of Cleverley and Associates, which works with health care providers to help them understand the financial impacts of changing contract terms. The cost for a patient with one health plan may be very different than the cost for the next patient with another plan.

The fact that hospital prices might be confusing for patients is a consequence of the lack of standardization in contracts and presentation, Cleverley said. “They’re not being nefarious.”

“Until we kind of align as an industry, there’s going to continue to be this variation in terms of how people look at the data and the utility of it,” he said.

Instead of aiding shoppers, the federally mandated data has become the foundation for negotiations — or sometimes lawsuits — over the proper level of compensation.

The top use for the pricing data for health care providers and payers, such as insurers, is “to use that in their contract negotiations,” said Marcus Dorstel, an executive at price transparency startup Turquoise Health.

Turquoise Health assembles price data by grouping codes for services together using machine learning, a type of artificial intelligence. It is just one example in a cottage industry of startups offering insights into prices. And, online, the startups’ advertisements hawking their wares often focus on hospitals and their periodic jousts with insurers. Turquoise has payers and providers as clients, Dorstel said.

“I think nine times out of 10 you will hear them say that the price transparency data is a vital piece of the contract negotiation now,” he said.

Of course, prices aren’t the only variable that negotiations hinge on. Hoag said Blue Cross Blue Shield of Minnesota also considers quality of care, rates of unnecessary treatments, and other factors. And sometimes negotiators feel as if they have to keep up with their peers — claiming a need for more revenue to match competitors’ salaries, for example.

Hoag said doctors and other providers often look at the data from comparable health systems and say, “‘I need to be paid more.’”

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To ensure it tastes good and is safe to drink, a small team of scientists and technicians is constantly testing the water for pH, odors, heavy metals, and microbes.

But unlike many smaller municipal utilities in the U.S., Louisville Water regularly checks for PFAS — per- and polyfluoroalkyl substances.

That’s a class of chemicals used by manufacturers for decades to make things like nonstick pans, cosmetics, raincoats, food wrappers, and firefighting foam.

Research studies have linked PFAS to health risks like cancer, reduced immune system functioning, high cholesterol, and developmental delays in children.

They’re also known as “forever chemicals” because their strong chemical structures make them degrade incredibly slowly in the environment.

Today, they litter soil and water sources around the world and can be found in the blood of almost everyone in the U.S.

One type of PFAS that the Louisville water technicians are tracking is HFPO-DA, also known by a trade name, GenX.

Just over a year ago, workers noticed an unexpected increase in the level of GenX detected in a sample of the raw, untreated water drawn from the Ohio River for filtering and processing.

The GenX levels Louisville found in December 2024 were 15 times the reading from the previous month: 52 parts per trillion versus 3.4 ppt.

“A part per trillion is like one second in 32,800 years. Put your head around that, right?” said Peter Goodmann, the city utility’s director of water quality and research.

He offered another way to think of it: One part per trillion would be a single drop of water in 20 Olympic swimming pools.

Goodmann told KFF Health News and NPR he wasn’t worried about local customers’ safety, because the increased levels were still pretty low.

Risks posed by low PFAS concentrations are measured over a lifetime of exposure, he said. And recent data from Louisville shows the PFAS levels in city drinking water fell back within planned federal safety limits.

Plus, water is just one way people can be exposed to PFAS, Goodmann added. “Because you get a lot more of these pollutants from packaging, from prefixed food, cake mixes, weird things, you know, popcorn boxes,” he said.

Louisville Water’s data showed that the elevated levels of GenX in the water sample drawn in December 2024 fell once the water underwent typical treatment and filtering.

Federal Regulation Fight

The federal government has long regulated the levels of certain contaminants in drinking water, such as arsenic, E. coli, and lead.

But the Environmental Protection Agency didn’t issue regulations regarding PFAS until 2024, during the final year of the Biden administration. The new limits applied to six types of PFAS in drinking water. Starting in 2029, utilities that exceeded the limits would have been required to treat the water to reduce the contamination.

But after Donald Trump’s reelection, new EPA administrator Lee Zeldin announced the agency will keep the rules for only two types of PFAS, called PFOA and PFOS, but drop the restrictions on the other four types, including GenX.

In addition, the EPA announced it will give water utilities two additional years, until 2031, to comply with the remaining rules, attributing the change in part to the financial burden on rural water plants.

Many utilities, large and small, may need to invest in infrastructure to remove PFAS.

A federal study estimated about 45% of U.S. tap water contains at least one type of PFAS.

When it announced the final PFAS limits, the Biden administration anticipated that up to 10% of the estimated 66,000 U.S. public drinking water systems affected by these regulations might have PFAS levels high enough to require them to take action to reduce the contamination.

Finding the Source

Goodmann’s team traced the increased levels of PFAS up the Ohio River, past Cincinnati, and through Appalachian forests, all the way to a West Virginia factory about 400 miles upstream.

There, the Chemours Co. uses GenX to make fluoropolymers, a plastic critical to the semiconductors that power phones.

Its Washington Works facility near Parkersburg, West Virginia, has a history of PFAS pollution.

A lawyer, Robert Bilott, fought the plant’s previous owner, DuPont, in court, ultimately revealing the company knew that a type of PFAS it was using, PFOA, was toxic but didn’t disclose that information.

DuPont went on to settle various lawsuits that claimed it contaminated local environments with forever chemicals. The company has repeatedly denied wrongdoing.

Chemours was spun off from DuPont in 2015.

The Louisville Water team’s calculations eventually showed that the December 2024 spike in GenX levels corresponded to publicly available data from Chemours about its chemical discharges into the Ohio River.

In Chemours’ responses to a lawsuit filed by a West Virginia environmental group, the company denied its discharges were connected to Louisville’s GenX spike. (Louisville is not a party in the lawsuit.)

The company also contended that sampling data showed levels of GenX in the river and in downstream utilities’ treated drinking water are “indisputably safe.”

PFAS Removal Will Challenge Water Utilities

Under current federal environmental regulations, Chemours can release some chemicals into the Ohio River. But it has exceeded the legal limits repeatedly over several years, according to court filings and the EPA.

That’s why the West Virginia Rivers Coalition filed its lawsuit in 2024.

The EPA took enforcement action in 2023, when it said it found Chemours’ West Virginia factory had repeatedly exceeded permit limits for two types of forever chemicals, GenX and PFOA.

But the West Virginia Rivers Coalition said in a court filing that the EPA’s consent order for Chemours “is not being diligently prosecuted.”

Chemours declined to answer questions from KFF Health News and NPR, citing ongoing litigation, except to point out that Louisville’s “finished drinking water is safe for consumption,” with PFAS levels below the EPA’s regulatory limits, as stated on Louisville Water’s website and in the annual water quality report from Cincinnati, which also draws from the Ohio River.

As research into the health effects of PFAS exposure continues, environmental advocates say it’s imperative for companies to meet the limitations set by government permits.

“Environmental regulatory permitting is a license to pollute,” said Nick Hart, the water policy director for the Kentucky Waterways Alliance.

“You’re permitting someone to put something into the atmosphere, into water, into soil that would not be there otherwise. And so when we talk about the safe levels,” he said, “stop using the word ‘safe,’ right? This is the maximum allowable limit.”

It is possible to remove PFAS from drinking water. For example, Louisville’s utility is spending about $23 million to redesign its powdered activated carbon system, which is one method used to take out PFAS.

But PFAS removal can get expensive, especially for small, rural towns, Hart said. Preventing contaminants such as PFAS from getting into a community’s drinking water supply is easier and less costly compared with removing it on the back end, he added.

In Chemours’ responses to the lawsuit, the company acknowledged that its violating its current permit but noted it’s working with government regulators on an eventual fix.

The federal judge in the case, Joseph Goodwin, decided that wasn’t fast enough.

In August, he ordered Chemours to immediately stop overpolluting. The company quickly filed an appeal.

The West Virginia Rivers Coalition declined to speak with KFF Health News and NPR but did point to its August news release on the judge’s ruling.

“This is a victory for public health and the Ohio River,” Autumn Crowe, the organization’s deputy director, said in the statement. “The Court recognized what communities have known for years: Chemours has been polluting our water and ignoring its legal obligations.”

In a court filing for the case, Goodmann said that elevated levels of GenX could make it more challenging for water utilities such as Louisville’s to comply with federal rules for safe drinking water.

In regard to Chemours specifically, Goodmann told KFF Health News and NPR that when government regulators issue the company’s next permit, he wants them to take into account the water treatment plants downstream.

“So what we do is manage risk, and we start that at the river,” he said. “It sounds weird, but source water protection — keeping the stuff out of the river — is a big deal.”

This article is from a partnership that includes Louisville Public Media, NPR, and KFF Health News.

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

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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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“There are enough reports of it, enough interest in it, that we actually did — ivermectin, in particular — did engage in sort of a better preclinical study of its properties and its ability to kill cancer cells,” said Anthony Letai, a physician the Trump administration appointed as NCI director in September.

Letai did not cite new evidence that might have prompted the institute to research the effectiveness of the antiparasitic drug against cancer. The drug, largely used to treat people or animals for infections caused by parasites, is a popular dewormer for horses.

“We’ll probably have those results in a few months,” Letai said. “So we are taking it seriously.”

He spoke about ivermectin at a Jan. 30 event, “Reclaiming Science: The People’s NIH,” with National Institutes of Health Director Jay Bhattacharya and other senior agency officials at Washington, D.C.’s Willard Hotel. The MAHA Institute hosted the discussion, framed by the “Make America Healthy Again” agenda of Health and Human Services Secretary Robert F. Kennedy Jr. The National Cancer Institute is the largest of the NIH’s 27 branches.

During the covid pandemic, ivermectin’s popularity surged as fringe medical groups promoted it as an effective treatment. Clinical trials have found it isn’t effective against covid.

Ivermectin has become a symbol of resistance against the medical establishment among MAHA adherents and conservatives. Like-minded commentators and wellness and other online influencers have hyped — without evidence — ivermectin as a miracle cure for a host of diseases, including cancer. Trump officials have pointed to research on ivermectin as an example of the administration’s receptiveness to ideas the scientific establishment has rejected.

“If lots of people believe it and it’s moving public health, we as NIH have an obligation, again, to treat it seriously,” Bhattacharya said at the event. According to The Chronicle at Duke University, Bhattacharya recently said he wants the NIH to be “the research arm of MAHA.”

The decision by the world’s premier cancer research institute to study ivermectin as a cancer treatment has alarmed career scientists at the agency.

“I am shocked and appalled,” one NCI scientist said. “We are moving funds away from so much promising research in order to do a preclinical study based on nonscientific ideas. It’s absurd.”

KFF Health News granted the scientist and other NCI workers anonymity because they are not authorized to speak to the press and fear retaliation.

HHS and the National Cancer Institute did not answer KFF Health News’ questions on the amount of money the cancer institute is spending on the study, who is carrying it out, and whether there was new evidence that prompted NCI to look into ivermectin as an anticancer therapy. Emily Hilliard, an HHS spokesperson, said NIH is dedicated to “rigorous, gold-standard research,” something the administration has repeatedly professed.

A preclinical study is an early phase of research conducted in a lab to test whether a drug or treatment may be useful and to assess potential harms. These studies take place before human clinical trials.

The scientist questioned whether there is enough initial evidence to warrant NCI’s spending of taxpayer funds to investigate the drug’s potential as a cancer treatment.

The FDA has approved ivermectin for certain uses in humans and animals. Tablets are used to treat conditions caused by parasitic worms, and the FDA has approved ivermectin lotions to treat lice and rosacea. Two scientists involved in its discovery won the Nobel Prize in 2015, tied to the drug’s success in treating certain parasitic diseases.

The FDA has warned that large doses of ivermectin can be dangerous. Overdoses can cause seizures, comas, or death.

Kennedy, supporters of the MAHA movement, and some conservative commentators have promoted the idea that the government and pharmaceutical companies quashed ivermectin and other inexpensive, off-patent drugs because they’re not profitable for the drug industry.

“FDA’s war on public health is about to end,” Kennedy wrote in an October 2024 X post that has since gone viral. “This includes its aggressive suppression of psychedelics, peptides, stem cells, raw milk, hyperbaric therapies, chelating compounds, ivermectin, hydroxychloroquine, vitamins, clean foods, sunshine, exercise, nutraceuticals and anything else that advances human health and can’t be patented by Pharma.”

Previous laboratory research has shown that ivermectin could have anticancer effects because it promotes cell death and inhibits the growth of tumor cells. “It actually has been studied both with NIH funds and outside of NIH funds,” Letai said.

However, there is no evidence that ivermectin is safe and effective in treating cancer in humans. Preliminary data from a small clinical trial that gave ivermectin to patients with one type of metastatic breast cancer, in combination with immunotherapy, found no significant benefit from the addition of ivermectin.

Some physicians are concerned that patients will delay or forgo effective cancer treatments, or be harmed in other ways, if they believe unfounded claims that ivermectin can treat their disease.

“Many, many, many things work in a test tube. Quite a few things work in a mouse or a monkey. It still doesn’t mean it’s going to work in people,” said Jeffery Edenfield, executive medical director of oncology for the South Carolina-based Prisma Health Cancer Institute.

Edenfield said cancer patients ask him about ivermectin “regularly,” mostly because of what they see on social media. He said he persuaded a patient to stop using it, and a colleague recently had a patient who decided “to forgo highly effective standard therapy in favor of ivermectin.”

“People come to the discussion having largely already made up their mind,” Edenfield said.

“We’re in this delicate time when there’s sort of a fundamental mistrust of medicine,” he added. “Some people are just not going to believe me. I just have to keep trying.”

A June letter by clinicians at Cincinnati Children’s Hospital Medical Center in Ohio detailed how an adolescent patient with metastatic bone cancer started taking ivermectin “after encountering social media posts touting its benefits.” The patient — who hadn’t been given a prescription by a clinician — experienced ivermectin-related neurotoxicity and had to seek emergency care because of nausea, fatigue, and other symptoms.

“We urge the pediatric oncology community to advocate for sensible health policy that prioritizes the well-being of our patients,” the clinicians wrote.

The lack of evidence about ivermectin and cancer hasn’t stopped celebrities and online influencers from promoting the notion that the drug is a cure-all. On a January 2025 episode of Joe Rogan’s podcast, actor Mel Gibson claimed that a combination of drugs that included ivermectin cured three friends with stage 4 cancer. The episode has been viewed more than 12 million times.

Lawmakers in a handful of states have made the drug available over the counter. And Florida — which, under Republican Gov. Ron DeSantis, has become a hotbed for anti-vaccine policies and the spread of public health misinformation — announced last fall that the state plans to fund research to study the drug as a potential cancer treatment.

The Florida Department of Health did not respond to questions about that effort.

Letai, previously a Dana-Farber Cancer Institute oncologist, started at the National Cancer Institute after months of upheaval caused by Trump administration policies.

“What you’re hearing at the NIH now is an openness to ideas — even ideas that scientists would say, ‘Oh, there’s no way it could work’ — but nevertheless applying rigorous scientific methods to those ideas,” Bhattacharya said at the Jan. 30 event.

A second NCI scientist, who was granted anonymity due to fear of retaliation, said the notion that NIH was not open to investigating the value of off-label drugs in cancer is “ridiculous.”

“This is not a new idea they came up with,” the scientist said.

Letai didn’t elaborate on whether NCI scientists are conducting the research or if it has directed funding to an outside institution. Three-quarters of the cancer institute’s research dollars go to outside scientists.

He also aimed to temper expectations.

“At least on a population level,” Letai said, “it’s not going to be a cure-all for cancer.”

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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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For a second year, the Democrat has asked state lawmakers to roll back coverage for some immigrants in the face of federal Medicaid spending cuts and a roughly $3 billion budget deficit that analysts warn could worsen if the artificial intelligence bubble bursts. Newsom has proposed that the state not step in when, starting in October, the federal government stops providing health coverage to an estimated 200,000 legal residents — comprising asylees, refugees, and others.

Progressive legislators and activists said the cost-saving measures are a departure from Newsom’s “health for all” pledge, while Republicans continue to skewer Newsom for using public funds to cover any noncitizens.

Newsom’s latest move would save an estimated $786 million this fiscal year and $1.1 billion annually in future years in a proposed budget of $349 billion, according to the Department of Finance.

State Sen. Caroline Menjivar, one of two Senate Democrats who voted against Newsom’s immigrant health cuts last year, said she worried the governor’s political ambition could be getting in the way of doing what’s best for Californians.

“You’re clouded by what Arkansas is going to think, or Tennessee is going to think, when what California thinks is something completely different,” said Menjivar, who said previous criticism got her temporarily removed from a key budget subcommittee. “That’s my perspective on what’s happening here.”

Meanwhile, Republican state Sen. Tony Strickland criticized Newsom for glossing over the state’s structural deficit, which state officials say could balloon to $27 billion the following year. And he slammed Newsom for continuing to cover California residents in the U.S. without authorization. “He just wants to reinvent himself,” Strickland said.

It’s a political tightrope that will continue to grow thinner as federal support shrinks amid ever-rising health care expenses, said Guian McKee, a co-chair of the Health Care Policy Project at the University of Virginia’s Miller Center of Public Affairs.

“It’s not just threading one needle but threading three or four of them right in a row,” McKee said. Should Newsom run, McKee added, the priorities of Democratic primary voters — who largely mirror blue states like California — look very different from those in a far more divided general electorate.

Americans are deeply divided on whether the government should provide health coverage to immigrants without legal status. In a KFF poll last year, a slim majority — 54% — were against a provision that would have penalized states that use their own funds to pay for immigrant health care, with wide variation by party. The provision was left out of the final version of the bill passed by Congress and signed by President Donald Trump.

Even in California, support for the idea has waned amid ongoing budget problems. In a May survey by the Public Policy Institute of California, 41% of adults in the state said they supported providing health coverage to immigrants who lack legal status, a sharp drop from the 55% who supported it in 2023.

Trump, Vice President JD Vance, other administration officials, and congressional Republicans have repeatedly accused California and other Democratic states of using taxpayer funds on immigrant health care, a red-meat issue for their GOP base. Centers for Medicare & Medicaid Services Administrator Mehmet Oz has accused California of “gaming the system” to receive more federal funds, freeing up state coffers for its Medicaid program, known as Medi-Cal, which has enrolled roughly 1.6 million immigrants without legal status.

“If you are a taxpayer in Texas or Florida, your tax dollars could’ve been used to fund the care of illegal immigrants in California,” he said in October.

California state officials have denied the charges, noting that only state funds are used to pay for general health services for those without legal status because the law prohibits using federal funds. Instead, Newsom has made it a “point of pride” that California has opened up coverage to immigrants, which his administration has noted keeps people healthier and helps them avoid costly emergency room care often covered at taxpayer expense.

“No administration has done more to expand full coverage under Medicaid than this administration for our diverse communities, documented and undocumented,” Newsom told reporters in January. “People have built careers out of criticizing my advocacy.”

Newsom warns the federal government’s “carnival of chaos” passed Trump’s One Big Beautiful Bill Act, which he said puts 1.8 million Californians at risk of losing their health coverage with the implementation of work requirements, other eligibility rules, and limits to federal funding to states.

Nationally, 10 million people could lose coverage by 2034, according to the Congressional Budget Office. Health economists have said higher numbers of uninsured patients — particularly those who are relatively healthy — could concentrate coverage among sicker patients, potentially increasing premium costs and hospital prices overall.

Immigrant advocates say it’s especially callous to leave residents who may have fled violence or survived trafficking or abuse without access to health care. Federal rules currently require state Medicaid programs to cover “qualified noncitizens” including asylees and refugees, according to Tanya Broder of the National Immigration Law Center. But the Republican tax-and-spending law ends the coverage, affecting an estimated 1.4 million legal immigrants nationwide.

With many state governors yet to release budget proposals, it’s unclear how they might handle the funding gaps, Broder said.

For instance, Colorado state officials estimate roughly 7,000 legal immigrants could lose coverage due to the law’s changes. And Washington state officials estimate 3,000 refugees, asylees, and other lawfully present immigrants will lose Medicaid.

Both states, like California, expanded full coverage to all income-eligible residents regardless of immigration status. Their elected officials are now in the awkward position of explaining why some legal immigrants may lose their health care coverage while those without legal status could keep theirs.

Last year, spiraling health care costs and state budget constraints prompted the Democratic governors of Illinois and Minnesota, potential presidential contenders JB Pritzker and Tim Walz, to pause or end coverage of immigrants without legal status.

California lawmakers last year voted to eliminate dental coverage and freeze new enrollment for immigrants without legal status and, starting next year, will charge monthly premiums to those who remain. Even so, the state is slated to spend $13.8 billion from its general fund on immigrants not covered by the federal government, according to Department of Finance spokesperson H.D. Palmer.

At a press conference in San Francisco in January, Newsom defended those moves, saying they were necessary for “fiscal prudence.” He sidestepped questions about coverage for asylees and refugees and downplayed the significance of his proposal, saying he could revise it when he gets a chance to update his budget in May.

Kiran Savage-Sangwan, executive director of the California Pan-Ethnic Health Network, pointed out that California passed a law in the 1990s requiring the state to cover Medi-Cal for legal immigrants when federal Medicaid dollars won’t. This includes green-card holders who haven’t yet met the five-year waiting period for enrolling in Medicaid.

Calling the governor’s proposal “arbitrary and cruel,” Savage-Sangwan criticized his choice to prioritize rainy day fund deposits over maintaining coverage and said blaming the federal government was misleading.

It’s also a major departure from what she had hoped California could achieve on Newsom’s first day in office seven years ago, when he declared his support for single-payer health care and proposed extending health insurance subsidies to middle-class Californians.

“I absolutely did have hope, and we celebrated advances that the governor led,” Savage-Sangwan said. “Which makes me all the more disappointed.”

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When she noticed an unusual craving for hot dogs, Matte’a Brooks suspected her body was telling her something, so she decided to take a pregnancy test. She took two just to be sure. Both were positive.

“I was definitely scared,” said Brooks, 23, who was uninsured. “I was like, OK … I’m pregnant, so where do I go from here?”

Until then she hadn’t thought much about health care, but that changed when she found out that her daughter was on the way.

Brooks got that news last winter. The mix of joy, anxiety, and excitement she felt mirrors what many new parents feel at this time of year. Many Americans find out in January or February that they’re expecting, because in the U.S., August has consistently high birth rates.

A growing body of research shows that prenatal care can make a huge difference to the long-term health of both the parent and baby. This is part of why every state offers health coverage to pregnant women who meet income requirements and might otherwise go uninsured.

As a result, Medicaid pays for more than 40% of births in the U.S. and an even higher percentage in rural areas, according to KFF. But Medicaid also comes with limitations, and providers may restrict how many Medicaid patients they take, since the payments are substantially lower than other insurers’.

Here are three things to know about signing up for Medicaid when pregnant.

1. Pregnancy Makes You a Priority

To sign up for government health care, you have to meet a number of requirements that vary widely by state. Most importantly, your income has to be below a certain threshold. In several states, most adults cannot qualify, regardless of income, if they’re not disabled or the parent of a child.

But the math is different for pregnancy. In Tennessee, for example, the eligibility cutoff in pregnancy is more than double the income threshold for some other residents. So if you didn’t qualify for Medicaid previously and are now pregnant, it’s worth double-checking your state’s requirements.

2. Getting Covered Can Be Surprisingly Easy

To apply, you’ll likely need to provide proof of income, your Social Security number, and proof of residency. Brooks, an Illinois resident, told HealthQ that she found the sign-up process surprisingly easy. She learned about Medicaid from the provider at her initial prenatal visit.

“They asked if I had insurance. I didn’t know anything at the time,” she said. The nonprofit clinic gave her some phone numbers for the state Medicaid agency. She called and went to an in-person appointment to complete her application. She walked out of the office with coverage. In 28 states, pregnancy results in “presumptive eligibility,” which provides immediate coverage — even without confirmation of the pregnancy — while the application goes through the approval process.

3. Coverage Can Go Beyond Standard Medical Care

Medicaid provides all prenatal care at no out-of-pocket cost and usually a full year of postpartum care. That’s what happened to Brooks: Her appointments, medications, and delivery were free.

States cover dental, vision, and mental health care to varying degrees. Ashley Farrell, who lost her job when she was pregnant and applied to Medicaid in Georgia, said she received “rewards for going to your appointments,” including grocery cards and a breast pump. Benefits vary by state.

People and Policy

Some maternal health advocates are worried about how Medicaid cuts in the One Big Beautiful Bill Act will affect pregnancy coverage. Though it’s unclear when or how, states might scale back eligibility or offerings for expectant mothers.

Katherine Ruppelt at Nashville Public Radio contributed to this report.

HealthQ is a health series from reporters Cara Anthony and Blake Farmer — approachable guides to an unapproachable health care system. It’s a collaboration between Nashville Public Radio and KFF Health News.

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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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The retiree, 70, was diagnosed with glaucoma in her right eye in 2019. She had a laser procedure to treat it in 2022, and she uses medicated drops in both eyes to prevent more damage. She is supposed to be checked regularly, she said.

During the May appointment, Tuszynski’s optometrist examined her eyes and reassured her that the glaucoma had not worsened.

Tuszynski, who lives in central Wisconsin, had looked up beforehand whether the clinic in nearby Madison participated in her insurance plan. The insurer’s website listed the optometrist’s name with a green check mark and the words “in-network.” She assumed that meant her policy would cover the appointment.

Then the bill came.

The Medical Procedure

An optometrist tested Tuszynski’s vision and took pictures of her optic nerves.

The Final Bill

$340, which included $120 for vision testing and $100 for optic nerve imaging.

The Billing Problem: Vision Coverage vs. Medical Coverage

Tuszynski’s UnitedHealthcare Medicare Advantage plan declined to pay for her eye appointment. “The member has no out of network benefits,” the company’s denial letter said.

Tuszynski felt like she was seeing double. How could an eye doctor be in-network and out-of-network at the same time? She said she sent the insurer a screenshot of its own webpage showing the clinic listed as in-network.

She said that after she complained, UnitedHealthcare representatives explained that the eye clinic was in-network under her vision plan, so her policy would cover the clinic’s services related to glasses or contact lenses. But they said the clinic was not in-network for her medical insurance plan, and glaucoma treatment is considered a medical issue.

Tuszynski was baffled that care for a patient’s eyes would not be covered by vision insurance. She said she didn’t realize that insurers can have contracts with eye clinics to provide some services but not others.

UnitedHealthcare spokesperson Meg Sergel said such arrangements are common, including with non-Medicare insurance provided by employers or purchased by individuals. “I looked up my eye doctor, and it’s the same thing,” she said in an interview with KFF Health News.

Sergel said she understood how a customer could mistakenly think vision insurance would cover all care for the eyes. She said UnitedHealthcare recommends that before undergoing treatment, patients ask care providers whether they are in-network for specific services.

Otherwise, she said, to know whether a test or treatment is covered by vision insurance, “you’d have to read the nitty-gritty” of a policy.

Leaders at Steinhauer Family Eye Clinic, where Tuszynski saw the optometrist, declined to comment.

Casey Schwarz, senior counsel for education and federal policy at the nonprofit Medicare Rights Center, said such complications frequently come up when Medicare Advantage members try to use their insurance at eye clinics or dental offices.

The federal government pays insurers to run Medicare Advantage plans for people who choose them instead of traditional Medicare. More than half of Medicare beneficiaries sign up for the private plans. Many offer routine vision and dental coverage that isn’t included with traditional Medicare.

“We hear from people who choose these plans because of those supplemental benefits, but there is not a lot of transparency around them,” Schwarz said.

The Resolution

After receiving the rejection letter, Tuszynski repeatedly contacted UnitedHealthcare to question the decision and filed an appeal with the company. Then, she said, she called a Medicare hotline to complain to federal officials. She also wrote to KFF Health News, which asked the insurer about the case.

UnitedHealthcare eventually agreed to cover the bill as if the service had been in-network. “In good faith, we made an exception,” Sergel said. However, Tuszynski was warned that if she received medical care from the clinic again, it would not be covered, because the clinic remains out-of-network for such services, Sergel said. “It doesn’t sound like that pleased her.”

Tuszynski confirmed that she is not pleased.

She said she lost sleep over the dispute and felt that it shouldn’t have taken so much effort to obtain a fair outcome. “It’s just been a horrible, difficult whirlwind,” she said.

The Takeaway

Schwarz said regulators should require insurance companies to clearly explain to customers and care providers how different procedures and services will be covered under vision, dental, and health plans. “They’re tricky,” she said.

In an ideal world, Schwarz said, Medicare would consider things like dental cleanings, eye checkups, and hearing aids as basic health care that would be covered in the same way as other medical care. But until that happens, she said, patients with any doubt should call their insurers beforehand to check whether services will be covered.

Tricia Neuman, a senior vice president with KFF, a health information nonprofit that includes KFF Health News, noted that Medicare’s website now includes a tool that can help people determine whether their doctors participate in a Medicare Advantage plan.

“This is helpful and a step forward, but information about provider networks is not always correct,” Neuman said. “Errors can come at a cost to enrollees, unless they are willing and able to take on their insurer.”

Tuszynski worked for 30 years as a secretary in hospitals and at doctors’ offices, so she’s familiar with billing issues, she said. “If I can’t sort through all this, how can anybody else do it?”

She knows her $340 bill was much smaller than the medical debts many other people face. But she said it was a serious amount of money to her, and she was glad she objected to the insurer’s contention that the bill shouldn’t be covered.

“I have a strong feeling about right and wrong — and this is just wrong,” she said.

For 2026, she decided to shift out of her Medicare Advantage plan. She now is enrolled in traditional Medicare, plus a supplemental plan to help with copays and other costs. She pays $184 a month for that plan, compared with paying no separate premium for her old Medicare Advantage plan.

Now she won’t have to worry about private insurers’ limited networks of contracted care providers, she said. Her glaucoma treatment will be covered at the Madison eye clinic.

However, she no longer has insurance coverage for eyeglasses, just a discount plan if she buys glasses from certain stores. She used her Medicare Advantage insurance to buy new glasses shortly before switching. “Hopefully, those will last me a while,” she said.

Bill of the Month is a crowdsourced investigation by KFF Health News and The Washington Post’s Well+Being that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

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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