Vince Lahey of Carefree, Arizona, embraces chatbots. From Big Tech products to “shady” ones, they offer “someone that I could share more secrets with than my therapist.”

He especially likes the apps for feedback and support, even though sometimes they berate him or lead him to fight with his ex-wife. “I feel more inclined to share more,” Lahey said. “I don’t care about their perception of me.”

There are a lot of people like Lahey.

Demand for mental health care has grown. Self-reported poor mental health days rose by 25% since the 1990s, found one study analyzing survey data. According to the Centers for Disease Control and Prevention, suicide rates in 2022 matched a 2018 high that hadn’t been seen in nearly 80 years.

There are many patients who find a nonhuman therapist, powered by artificial intelligence, highly appealing — more appealing than a human with a reclining couch and stern manner. Social media is replete with videos begging for a therapist who’s “not on the clock,” who’s less judgmental, or who’s just less expensive.

Most people who need care don’t get it, said Tom Insel, former head of the National Institute of Mental Health, citing his former agency’s research. Of those who do, 40% receive “minimally acceptable care.”

“There’s a massive need for high-quality therapy,” he said. “We’re in a world in which the status quo is really crappy, to use a scientific term.”

Insel said engineers from OpenAI told him last fall that about 5% to 10% of the company’s then-roughly 800 million-strong user base rely on ChatGPT for mental health support.

Polling suggests these AI chatbots may be even more popular among young adults. A KFF poll found about 3 in 10 respondents ages 18 to 29 turned to AI chatbots for mental or emotional health advice in the past year. Uninsured adults were about twice as likely as insured adults to report using AI tools. And nearly 60% of adult respondents who used a chatbot for mental health didn’t follow up with a flesh-and-blood professional.

The App Will Put You on the Couch

A burgeoning industry of apps offers AI therapists with human-like, often unrealistically attractive avatars serving as a sounding board for those experiencing anxiety, depression, and other conditions.

KFF Health News identified some 45 AI therapy apps in Apple’s App Store in March. While many charge steep prices for their services — one listed an annual plan for $690 — they’re still generally cheaper than talk therapy, which can cost hundreds of dollars an hour without insurance coverage.

On the App Store, “therapy” is often used as a marketing term, with small print noting the apps cannot diagnose or treat disease. One app, branded as OhSofia! AI Therapy Chat, had downloads in the six figures, said OhSofia! founder Anton Ilin in December.

“People are looking for therapy,” Ilin said. On one hand, the product’s name promises “therapy chat”; on the other, it warns in its privacy policy that it “does not provide medical advice, diagnosis, treatment, or crisis intervention and is not a substitute for professional healthcare services.” Executives don’t think that’s confusing, since there are disclaimers in the app.

The apps promise big results without backup. One promises its users “immediate help during panic attacks.” Another claims it was “proven effective by researchers” and that it offers 2.3 times faster relief for anxiety and stress. (It doesn’t say what it’s faster than.)

There are few legislative or regulatory guardrails around how developers refer to their products — or even whether the products are safe or effective, said Vaile Wright, senior director of the office of health care innovation at the American Psychological Association. Even federal patient privacy protections don’t apply, she said.

“Therapy is not a legally protected term,” Wright said. “So, basically, anybody can say that they give therapy.”

Many of the apps “overrepresent themselves,” said John Torous, a psychiatrist and clinical informaticist at Beth Israel Deaconess Medical Center. “Deceiving people that they have received treatment when they really have not has many negative consequences,” including delaying actual care, he said.

States such as Nevada, Illinois, and California are trying to sort out the regulatory disarray, enacting laws forbidding apps from describing their chatbots as AI therapists.

“It’s a profession. People go to school. They get licensed to do it,” said Jovan Jackson, a Nevada legislator, who co-authored an enacted bill banning apps from referring to themselves as mental health professionals.

Underlying the hype, outside researchers and company representatives themselves have told the FDA and Congress that there’s little evidence supporting the efficacy of these products. What studies there are give contradictory answers — and some research suggests companion-focused chatbots are “consistently poor” at managing crises.

“When it comes to chatbots, we don’t have any good evidence it works,” said Charlotte Blease, a professor at Sweden’s Uppsala University who specializes in trial design for digital health products.

The lack of “good quality” clinical trials stems from the FDA’s failure to provide recommendations about how to test the products, she said. “FDA is offering no rigorous advice on what the standards should be.”

Department of Health and Human Services spokesperson Emily Hilliard said, in response, that “patient safety is the FDA’s highest priority” and that AI-based products are subject to agency regulations requiring the demonstration of “reasonable assurance of safety and effectiveness before they can be marketed in the U.S.”

The Silver-Tongued Apps

Preston Roche, a psychiatry resident who’s active on social media, gets lots of questions about whether AI is a good therapist. After trying ChatGPT himself, he said he was “impressed” initially that it was able to use cognitive behavioral therapy techniques to help him put negative thoughts “on trial.”

But Roche said after seeing posts on social media discussing people developing psychosis or being encouraged to make harmful decisions, he became disillusioned. The bots, he concluded, are sycophantic.

“When I look globally at the responsibilities of a therapist, it just completely fell on its face,” he said.

This sycophancy — the tendency of apps based on large language models to empathize, flatter, or delude their human conversation partner — is inherent to the app design, experts in digital health say.

“The models were developed to answer a question or prompt that you ask and to give you what you’re looking for,” said Insel, the former NIMH director, “and they’re really good at basically affirming what you feel and providing psychological support, like a good friend.”

That’s not what a good therapist does, though. “The point of psychotherapy is mostly to make you address the things that you have been avoiding,” he said.

While polling suggests many users are satisfied with what they’re getting out of ChatGPT and other apps, there have been high-profile reports about the service providing advice or encouragement to self-harm.

And at least one dozen lawsuits alleging wrongful death or serious harm have been filed against OpenAI after ChatGPT users died by suicide or became hospitalized. In most of those cases, the plaintiffs allege they began using the apps for one purpose — like schoolwork — before confiding in them. These cases are being consolidated into a class-action lawsuit.

Google and the startup Character.ai — which has been funded by Google and has created “avatars” that adopt specific personas, like athletes, celebrities, study buddies, or therapists — are settling other wrongful-death lawsuits, according to media reports.

OpenAI’s CEO, Sam Altman, has said up to 1,500 people a week may talk about suicide on ChatGPT.

“We have seen a problem where people that are in fragile psychiatric situations using a model like 4o can get into a worse one,” Altman said in a public question-and-answer session reported by The Wall Street Journal, referring to a particular model of ChatGPT introduced in 2024. “I don’t think this is the last time we’ll face challenges like this with a model.”

An OpenAI spokesperson did not respond to requests for comment.

The company has said it works with mental health experts on safeguards, such as referring users to 988, the national suicide hotline. However, the lawsuits against OpenAI argue existing safeguards aren’t good enough, and some research shows the problems are worsening over time. OpenAI has published its own data suggesting the opposite.

OpenAI is defending itself in court, offering, early in one case, a variety of defenses ranging from denying that its product caused self-harm to alleging that the defendant misused the product by inducing it to discuss suicide. It has also said it’s working to improve its safety features.

Smaller apps also rely on OpenAI or other AI models to power their products, executives told KFF Health News. In interviews, startup founders and other experts said they worry that if a company simply imports those models into its own service, it might duplicate whatever safety flaws exist in the original product.

Data Risks

KFF Health News’ review of the App Store found listed age protections are minimal: Fifteen of the nearly four dozen apps say they could be downloaded by 4-year-old users; an additional 11 say they could be downloaded by those 12 and up.

Privacy standards are opaque. On the App Store, several apps are described as neither tracking personally identifiable data nor sharing it with advertisers — but on their company websites, privacy policies contained contrary descriptions, discussing the use of such data and their disclosure of information to advertisers, like AdMob.

In response to a request for comment, Apple spokesperson Adam Dema sent links to the company’s App Store policies, which bar apps from using health data for advertising and require them to display information about how they use data in general. Dema did not respond to a request for further comment about how Apple enforces these policies.

Researchers and policy advocates said that sharing psychiatric data with social media firms means patients could be profiled. They could be targeted by dodgy treatment firms or charged different prices for goods based on their health.

KFF Health News contacted several app makers about these discrepancies; two that responded said their privacy policies had been put together in error and pledged to change them to reflect their stances against advertising. (A third, the team at OhSofia!, said simply that they don’t do advertising, though their app’s privacy policy notes users “may opt out of marketing communications.”)

One executive told KFF Health News there’s business pressure to maintain access to the data.

“My general feeling is a subscription model is much, much better than any sort of advertising,” said Tim Rubin, the founder of Wellness AI, adding that he’d change the description in his app’s privacy policy.

One investor advised him not to swear off advertising, he said. “They’re like, essentially, that’s the most valuable thing about having an app like this, that data.”

“I think we’re still at the beginning of what’s going to be a revolution in how people seek psychological support and, even in some cases, therapy,” Insel said. “And my concern is that there’s just no framework for any of this.”

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It started building over the summer, fed by news of immigration raids across Southern California, Trump administration plans to share Medicaid data with Immigration and Customs Enforcement, and the passage of state and federal restrictions on immigrant Medicaid eligibility. Then in November, the federal government released a new “public charge” proposal that, if enacted, could block certain immigrants from obtaining permanent legal residency if they or family members have used public benefits, including Medicaid.

Many of González’ clients and their children, often U.S. citizens, still qualify for California’s Medicaid program, known as Medi-Cal, which provides health coverage to over 14 million residents with low incomes or disabilities. But increasingly, they don’t want to enroll or renew their coverage, she said.

“Many people don’t want to apply,” she said. “There are people who say they don’t even want to go outside and water their plants.”

An analysis by KFF Health News found that, from June to December, the latest month for which figures are available, almost 100,000 immigrants without legal status left Medi-Cal, representing about a quarter of all disenrollments in that time frame, even though this group makes up only about 11% of Medi-Cal enrollees.

It marks a reversal in a steady rise in enrollment among immigrants without legal status in California. Until July, sign-ups among this group had risen every month since the state opened Medi-Cal to all low-income residents regardless of immigration status in January 2024.

Tessa Outhyse, a spokesperson for the California Department of Health Care Services, which oversees Medi-Cal, said the enrollment declines can be mostly attributed to the fact that the government restarted eligibility checks that were suspended during the covid-19 pandemic. Indeed, overall Medi-Cal enrollment peaked in May 2023, and has since declined by about 1.6 million.

But two researchers, Leonardo Cuello at Georgetown University’s Center for Children and Families and Susan Babey at the UCLA Center for Health Policy Research, pointed out that California and most other states had fully resumed eligibility checks by mid-2024. In other words, that wouldn’t explain why enrollment has fallen precipitously in the last 12 months or so.

What has changed, Cuello said, is that the federal government passed the One Big Beautiful Bill Act, and executive orders added more changes that are propelling disenrollment.

Surveys Offer Clues

A KFF/New York Times survey found immigrant adults nationally, especially parents, to be increasingly avoiding government programs that help pay for food, housing, or health care, to avoid drawing attention to their or a family member’s immigration status. That included lawfully present residents and naturalized citizens. Parental avoidance of these programs is particularly concerning, Cuello said, because about 1 in 4 children in the U.S. have an immigrant parent, even though most of those children were born in the U.S.

Cuello suspects that may help explain a nationwide enrollment drop of almost 3% in Medicaid and the Children’s Health Insurance Program during the first 10 months of last year, including a 5.6% drop in enrollment among California children, according to data compiled by Georgetown colleagues.

During the first Trump administration, the president broadened public charge criteria to allow consideration of Medicaid use and food and housing assistance. That led many citizen children and other household members to forgo Medicaid and other programs they were eligible for. Some continued to avoid the programs even after several courts blocked implementation and Democratic President Joe Biden rescinded the rule.

“It caused a high level of confusion,” said Louise McCarthy, president and CEO of the Community Clinic Association of Los Angeles County, which represents about 70 health centers in the Los Angeles area. “Community health center staff are still working to undo the effects of the first rule.”

Projected Savings

Currently, only people reliant on cash assistance programs or long-term, government-funded institutionalized care may be considered a public charge risk when applying for a visa to enter the country or to become a legal permanent resident. But under the Trump administration’s proposed rule, Medicaid and other noncash programs could be used to determine whether an immigrant is likely to become dependent on the government. Immigration officers would also have more discretion to label people a public charge.

The Department of Homeland Security’s proposal says the changes are needed because the existing rules hamper the agency’s ability to make decisions about an immigrant’s risk of becoming reliant on government resources. A public comment period for the proposal ended in December.

DHS did not respond to a request about when it plans to make a final decision on the rule. The change would “align with long-standing policy that aliens in the United States should be self-reliant and government benefits should not incentivize immigration,” the proposal states.

The agency projected the change could save federal and state governments almost $9 billion annually from people disenrolling from or forgoing enrollment in public benefit programs.

A KFF analysis of the proposed rule estimated it could result in 1.3 to 4 million people disenrolling from Medicaid or CHIP, including as many as 1.8 million citizen children.

“It’s clearly being weaponized to create fear and anxiety,” said Benyamin Chao, supervising health and public benefits policy manager at the California Immigrant Policy Center. He called the proposal part of an “assault on lawfully present immigrants and U.S. citizens who are family members, and just the general community.”

Public charge fears are expected to decrease enrollment also in anti-hunger programs, such as the Supplemental Nutrition Assistance Program, known in California as CalFresh. Mark Lowry, who heads the Orange County Food Bank, said that that — along with disenrollment related to the One Big Beautiful Bill Act — could overwhelm food pantries, since federal nutrition programs account for the vast majority of food aid.

“There’s no way that the emergency food system has the capacity or resources to address those needs,” he said.

Health Care Needs

Fear of Medi-Cal enrollment doesn’t extend to all immigrants. Juana Zaragoza manages a program in Oxnard that helps mostly Indigenous Mexican farmworkers sign up for Medi-Cal. Overall enrollment and reenrollment has remained steady over the past few months, she said. Neither she nor the community members she serves know much about the public charge proposal, she added.

Often, any concerns they have are outweighed by an immediate need for health care.

“We encounter a lot of people who are balancing: what benefits me now and what benefits me later,” she said. “Some just want to cover their needs in the moment.”

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The federal government doesn’t track how many children have entered foster care because of immigration enforcement actions, leaving it unclear how often it happens. In Oregon, as of February two children had been placed in foster care after being separated from their parents in immigration detention cases, according to Jake Sunderland, a spokesperson for the Oregon Department of Human Services.

“Before fall 2025, this simply had never happened before,” Sunderland said.

As of mid-February, nearly 70,000 people were being held by Immigration and Customs Enforcement. The record 73,000 people in detention in January represented an 84% increase compared with one year before. According to reporting from ProPublica, parents of 11,000 children who are U.S. citizens were detained from the beginning of Trump’s term through August.

The news outlet NOTUS reported in February that at least 32 children of detained or deported parents had been placed in foster care in seven states.

Sandy Santana, executive director of Children’s Rights, a legal advocacy organization, said he thinks the actual number is much higher.

“That, to us, seems really, really low,” he said.

Separation from a parent is deeply traumatic for children and can lead to various health and psychological issues, including post-traumatic stress disorder. Prolonged, intense stress can lead to more-frequent infections in children and developmental issues. That “toxic stress” is also associated with damage to areas of the brain responsible for learning and memory, according to KFF.

Maryland, New York, Washington, D.C., and Virginia amended existing laws during Trump’s first term to allow guardians to be granted temporary parental rights for immigration enforcement reasons. Now the enforcement surge that began after Trump returned to office last year has prompted a new wave of state responses.

In New Jersey, lawmakers are considering a bill to amend a state law that allows parents to nominate standby, or temporary, guardians in the cases of death, incapacity, or debilitation. The bill would add separation due to federal immigration enforcement as another allowable reason.

Nevada and California passed laws last year to protect families separated by immigration enforcement actions. California’s law, called the Family Preparedness Plan Act, allows parents to nominate guardians and share custodial rights, instead of having them suspended, while they’re detained. They regain their full parental rights if they are released and are able to reunite with their children.

There are significant legal barriers to reunification once a child is placed in state custody, said Juan Guzman, director of children’s court and guardianship at the Alliance for Children’s Rights, a legal advocacy organization in Los Angeles.

If a parent’s child is placed in foster care and the parent cannot participate in required court proceedings because they are in detention or have been deported, it’s less likely they will be able to reunite with their child, Guzman said.

An estimated 5.6 million children are U.S. citizens who live with a parent or family member who does not have legal immigration status, according to research from the Brookings Institution, a Washington, D.C.-based think tank. Within that group, 2.6 million children have two parents lacking legal status.

Santana said he expects the number of family separation cases to grow as the Trump administration continues its immigration enforcement campaign, putting more children at risk of being placed in foster care.

ICE directives require the agency to make efforts to facilitate detained parents’ participation in family court, child welfare, or guardianship proceedings, but Santana said it’s uncertain whether ICE is complying with those rules.

ICE officials did not respond to requests for comment for this report.

Before the change in California’s law, the only way a parent could share custodial rights with another guardian was if the parent was terminally ill, Guzman said.

If parents create a preparedness plan and identify an individual to assume guardianship of their children, the state child welfare agency can begin the process of placing the children with that individual without opening a formal foster care case, he added.

While Nevada lawmakers expanded an existing guardianship law last year to include immigration enforcement, the measure requires the parents to take the additional step of filing notarized paperwork with the secretary of state’s office, said Cristian Gonzalez-Perez, an attorney at Make the Road Nevada, a nonprofit that provides resources to immigrant communities.

Gonzalez-Perez said some immigrants are still hesitant to fill out government forms, out of fear that ICE might access their information and target them. He reassures community members that the state forms are secure and can be accessed only by hospitals and courts.

The Trump administration has taken unprecedented steps to access sensitive information through the Centers for Medicare & Medicaid Services, the IRS, the Supplemental Nutrition Assistance Program, the Department of Housing and Urban Development, and other entities.

Gonzalez-Perez and Guzman said that not enough immigrant parents know their rights. Nominating a temporary guardian and creating a plan for their families is one way they can prevent feelings of helplessness, Gonzalez-Perez said.

“Folks don’t want to talk about it, right?” Guzman said. “The parent having to speak to a child about the possibility of separation, it’s scary. It’s not something anybody wants to do.”

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Dressed in hiking gear and beaded necklaces, Carranza, 67, maneuvered between trees and children on a sunny morning in December. “Hold on to that branch,” she said in Spanish. “You can do it, my love!”

Carranza, a child development professional who grew up swinging through trees and swimming in rivers in El Salvador, said she feels at home in the forest at the outdoor preschool she co-founded. She has worked with children and teens as a caregiver and educator for more than three decades, long enough to know when to lean in and when to step back to let her students find their own footing.

When she transitioned to working part-time last year, Carranza counted on getting Medicare and Social Security checks — benefits given to American workers and lawfully present immigrants when they retire, if they meet work history and age or disability requirements. She’s contributed tens of thousands of dollars into Medicare and Social Security over 24 years, according to her Social Security Administration earnings record, reviewed by El Tímpano and KFF Health News. But Carranza and an estimated 100,000 other lawfully present immigrants will soon be cut out of Medicare.

The GOP’s One Big Beautiful Bill Act, signed last July by President Donald Trump, barred certain categories of lawfully present immigrants — including temporary protected status holders, refugees, asylum-seekers, survivors of domestic violence, trafficking victims, and people with work visas — from Medicare.

Those already in the program, like Carranza, will be disenrolled by Jan. 4 — a move by Republican lawmakers to rein in Medicare spending, as they and Trump have argued that taxpayer dollars should not be used to pay for the health care of immigrants in the U.S. without authorization.

“The Democrats want Illegal Aliens, many of them VIOLENT CRIMINALS, to receive FREE Healthcare,” Trump posted on Truth Social two months after he signed the bill into law. “We cannot let this happen!”

However, the categories of immigrants now losing coverage do have legal status. Neither the White House nor the Department of Health and Human Services responded to a question about whether it was fair to disenroll legal residents from Medicare.

Immigrants without legal status were already ineligible for Medicare or most other federally funded public benefits.

Carranza is worried that she could also lose legal permission to live in the United States if the Trump administration ends temporary protected status for Salvadorans, as it sought to do during his first term.

If that happened, Carranza would lose legal residency, risking time in an immigration detention center or deportation.

“This is like a horror movie, a complete nightmare,” Carranza said. “This is not how I imagined getting old.”

‘Under Constant Attack’

Carranza left El Salvador in 1991 during a brutal civil war, leaving behind three young children, to earn money to send home to her family. She overstayed her visa until 2001, when she qualified for temporary protected status, after two earthquakes struck El Salvador, killing more than 1,100 people and displacing 1.3 million.

Temporary protected status, or TPS, was passed by Congress and signed into law by Republican President George H.W. Bush in 1990.

It allows people such as Carranza, from select nations undergoing armed conflict, civil war, and climate disasters, to live and work in the United States if being in their home country poses a risk.

Carranza missed her youngest daughter’s graduation from kindergarten and first medal-winning performance in track. She worked overnight shifts babysitting newborns and later substitute-taught in public schools in the San Francisco Bay Area to pay for her children’s schooling in El Salvador, and for her own classes at City College of San Francisco, where she earned a degree in child development.

And she cared for dozens of 3-, 4-, and 5-year-olds who gazed in awe as they uncovered little treasures buried in the redwood forest of the Oakland park where she co-founded Escuelita del Bosque, a Spanish immersion preschool that teaches children outdoors.

The trade-off was supposed to be a peaceful retirement. But Congress narrowed Medicare eligibility to citizens, lawful permanent residents, Cuban and Haitian nationals, and people covered under the Compacts of Free Association, agreements between the United States and Pacific island nations.

The move followed Trump’s efforts to bar some lawfully present immigrants from Medicaid, marketplace insurance subsidies, and social support services, such as food assistance, housing subsidies, and medical visits in federally funded health centers. Altogether, 1.4 million lawfully present immigrants were projected to lose health insurance, according to KFF, a health information nonprofit that includes KFF Health News.

A spokesperson for House Speaker Mike Johnson, Taylor Haulsee, did not respond to requests for comment.

Michael Cannon, director of health policy studies at the Cato Institute, a libertarian think tank, said Republicans wanted to enact tax cuts and eliminate health insurance for immigrants because it wouldn’t upset their base.

“They don’t want to turn the United States into a welfare magnet,” he said. “And they resent the government for making them pay for a welfare state.”

While data on lawfully present immigrants is not available, immigrants without legal status paid $6.4 billion into Medicare and $25.7 billion into Social Security in 2022, according to the Institute on Taxation and Economic Policy. The Congressional Budget Office estimated that the Medicare restrictions alone would reduce federal spending by $5.1 billion by 2034.

Health experts say eliminating coverage for immigrants with legal status is unprecedented.

“This is actually the first time that Congress has taken away Medicare from any group,” said Drishti Pillai, director of immigrant health policy at KFF. “This change is impacting immigrants who have lawful presence in the U.S., and many of whom have already worked and paid into the system for decades.”

As older adults like Carranza lose their Medicare coverage, clinicians anticipate that they will delay their care, leading to an increase in severely ill patients, especially in hospital emergency rooms.

Seniors can become sick suddenly and quickly, and they are more vulnerable to cardiovascular diseases such as heart disease and high blood pressure, especially if they put off routine care, said Theresa Cheng, an emergency physician at Zuckerberg San Francisco General Hospital and assistant clinical professor of emergency medicine at the University of California-San Francisco.

“It’s quite easy for them to fall off the cliff,” Cheng said.

Carranza hikes and considers herself healthy, but she acknowledges that she is aging and starting to struggle to keep up with the kids in the forest.

Late last year she was diagnosed with high blood pressure, and in January she woke up with a tight chest and went to urgent care because it had spiked to dangerous levels. A few weeks later, she tripped on a curb while walking and fell to the ground. She woke up the next day with a swollen foot. A doctor at the local hospital told her she had arthritis.

These were scary moments, she said, but she was grateful to have to pay only $10 for the urgent care visit and $5 to see her primary care doctor. However, that will change when she loses Medicare by early next year.

The stress of knowing she will lose health insurance coverage, and potentially her legal status, all while masked federal agents are detaining immigrants like her across the country, has taken a toll on her mental health, she said. She is searching for a therapist and acupuncture services to treat her insomnia and anxiety — and the feeling that she is “under constant attack.”

Nowhere To Turn

In California, home to the largest number of immigrant seniors, Carranza could have enrolled in state-sponsored insurance, but this year the state froze enrollment for adults 19 and older who are a TPS holder, in the U.S. without authorization, or an asylum-seeker. Other states with Democratic governors such as Illinois and Minnesota have also scaled back their health programs for immigrants amid budget pressures.

In January, California Gov. Gavin Newsom proposed a state budget that would not backfill federal health care cuts to about 200,000 lawfully present immigrants, noting the $1.1 billion annual price tag and state budget shortfalls.

“Given these fiscal pressures, the administration cannot backfill for this change in federal policy,” California Department of Finance spokesperson H.D. Palmer said.

But some Democratic lawmakers and consumer advocates say the state should step in. State Assembly member Mia Bonta, who chairs the Assembly’s health committee, said she is working on a legislative budget solution to bring immigrants who will lose health coverage, including older adults, into Medi-Cal, the state’s version of Medicaid.

The East Bay Democrat is especially concerned for people like Carranza, “who have lived here for decades and contributed into this economy, who have given into our cultural fabric and into our communities and who built families and lives and who are now wanting to be able to retire with dignity and live with dignity and have the health care that they need.”

A Sign of the Future

Last April, Carranza got a glimpse of what losing her health coverage and retirement benefits could look like, after the Social Security Administration sent her a letter informing her that she no longer qualified for retirement benefits because she was not lawfully present in the U.S. — even though she was. Then Medicare stopped payments to her health plan, which disenrolled her as a result.

As a TPS holder with a work permit, she knew a mistake had been made. Yet, without her check, Carranza didn’t have money to pay her rent for a month. She worked off her rent by babysitting her landlords’ children. Last May, the office of U.S. Rep. Lateefah Simon, an Oakland Democrat, helped Carranza recover her retirement benefits, but it took months for her to get her health insurance back.

The experience left her reeling.

“It’s like getting slapped on the face after more than 30 years working for the system here,” Carranza said. “And in return, this is what we have now.”

She lies awake at night imagining the future: here, where she’s spent half her life, without health insurance and possibly Social Security benefits; or in El Salvador, where two of her three children remain. Her daughter, a green-card holder who lives in Texas, hopes to become a citizen so she can petition for permanent residency for Carranza, but the process can take years. Then there’s the possibility she fears most: indefinite detention or deportation.

On a recent morning in her basement studio in Oakland, Carranza pulled a box from the back of her closet. In it was a thick stack of identification cards that included old driver’s licenses, her Social Security card, and dozens of work IDs issued by the federal government.

“My life is in that box,” she said.

This article was produced in collaboration with El Tímpano, a civic media organization serving and covering the Bay Area’s Latino and Mayan immigrant communities.

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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He was already thinking about delaying it — then his monthly Obamacare insurance premium payment tripled this year to $2,460, about a third of his income, he said. And with a $2,700 deductible, he’d be on the hook for most of the diagnostic exam, a financial hit he said he couldn’t stomach.

“It was going to cost close to $3,000,” said Galvin, who lives in North Kingstown, Rhode Island, and recently retired as director of a durable medical equipment company. “I put it off.”

Galvin said his wife, Nancy, is delaying a costly CT scan for a few years until she too qualifies for Medicare, so it can foot the bill. The federal health program offers coverage for all Americans 65 and older.

People on Affordable Care Act plans nearing retirement age experienced some of the largest price increases following the expiration of enhanced federal subsidies at the end of December. Those with incomes above 400% of the federal poverty level — $86,560 for a family of two — had been getting help paying for the plans since the Biden administration expanded the subsidies during the covid-19 pandemic. Adults ages 50 through 64 made up around half of those ACA enrollees.

Now, without that federal financial help, some in this age group say they’re wrestling with whether to delay care until they qualify for Medicare. Not only does that put their physical health at risk, said patient advocates, doctors, and health policy researchers, but it potentially just shifts the costs — and could lead to taxpayers’ footing even bigger bills to fix health issues that worsen amid the delays.

“There’s going to be a lot of pent-up demand and unmet need,” said Jessica Schubel, a health policy consultant who worked in the Obama and Biden administrations. “Medicare is going to have to spend a whole heck of a lot of money covering and dealing with their treatment.”

The Affordable Care Act has been a key source of health care coverage for people 50 through 64. Access to Obamacare plans helped cut the uninsured rate for this age group by half, according to AARP, a lobbying group that represents older adults. That allowed some people to retire early while keeping coverage. It also has provided a safety net for small-business owners and those with jobs that don’t offer health insurance.

Last fall, the longest-ever government shutdown occurred amid an unsuccessful effort by Democrats to extend the enhanced subsidies. Republicans opposing the extension had said the assistance went to insurers, incentivizing fraud and wasteful coverage.

Waiting for Medicare

John Galvin, 64North Kingstown, Rhode Island

John Galvin knows he needs a colonoscopy. But he’s waiting until he turns 65 in December to schedule it, so that Medicare will pick up the tab. His monthly Obamacare premium payment jumped this year — from $800 to more than $2,400 — so he’s burning through a $30,000 retirement account to cover the additional costs. And that’s for a plan with a $2,700 deductible, which means he’d be on the hook for most of the pricey diagnostic exam. “It was going to cost close to $3,000,” Galvin says. “I put it off.”

— Sam Whitehead

The issue will continue to have political relevance, especially in this year’s midterm elections, including among older Americans who reliably show up to the polls, said Republican strategist Gregg Keller, who runs the Atlas Strategy Group.

“Is affordability going to be an issue? Absolutely,” he said. “Are health care prices going to factor into that? Yes.”

Even before the subsidies expired, the costs of medical care, nursing homes, and prescription drugs were among the top health-related concerns for people over 50, a 2024 University of Michigan poll found.

Middle-aged adults with Obamacare plans acutely feel the pinch of the expired subsidies, because the ACA allows insurers to charge adults in their 60s up to three times as much for premiums as those in their 20s, who generally use fewer medical services.

And many middle-aged adults were already enrolled in the lowest-cost plans available, which leaves them without cheaper options to fall back on, said Matt McGough, a policy analyst with KFF, a health information nonprofit that includes KFF Health News.

“This is very dire for the older marketplace enrollees,” he said.

Someone making a few dollars over 400% of the federal poverty level earns too much to get a subsidy now, and in some states average premium payments were due to at least triple for this group. Many people are seeing yearly rate increases of thousands of dollars, with premium payments totaling as much as a quarter of their incomes.

John Ayanian, a primary care physician and health policy researcher at the University of Michigan, said he has regular conversations with older patients who are trying to figure out how to afford their medical care. Some in their early 60s are likely to drop ACA coverage because of rising premiums, he said.

“That’s a gamble,” he added.

Marci Heinbaugh may take that bet. The 63-year-old social services worker, who lives in rural Illinois, said her monthly premium payments more than doubled, from roughly $1,100 to $2,333, for a plan with a $10,150 out-of-pocket maximum.

She knew she’d be paying more, she said, but wasn’t anticipating that kind of increase. A few months in, she’s not sure if she’ll stick with the plan for the rest of the year. She said she may go uninsured.

“I’m petrified to even think about that,” Heinbaugh said.

People want to buy their own insurance on the marketplace, and many middle-aged adults could afford it with just a little federal financial help, said Alan Weil, senior vice president of public policy at AARP. Those who drop coverage or delay care until they reach age 65 might save money now, but that could be more costly for them — and taxpayers — later.

“There’s significant possibility that the purported savings associated with reducing subsidies as people approach retirement end up turning into higher utilization costs for Medicare,” Weil said.

And Medicare enrollees aren’t insulated from rising costs. In January, for example, standard Medicare Part B premiums rose from $185 per month to almost $203.

Until Galvin joins Medicare, he said, he expects to burn through a $30,000 retirement account to cover his marketplace plan’s premium payments and deductible.

A 2024 AARP survey found that 1 in 5 adults over 50 had no retirement savings and 3 in 5 were worried they wouldn’t have enough retirement savings to support themselves.

The expiration of these Obamacare subsidies puts additional financial pressure on Americans as they approach retirement, health policy researchers said.

“It’s forcing people to make impossible choices,” said Natalie Kean, director of federal health advocacy for the national nonprofit Justice in Aging.

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The specific target is Medicaid, the public health insurance program that pairs state and federal money. Federal officials have announced unprecedented actions in Minnesota this year, declaring they could withhold over $2 billion in payments slated for the state and claw back nearly $260 million from last year.

The actions in Minnesota came as part of the administration’s declared crackdown on fraud, but critics have likened them to using a bludgeon instead of a scalpel, probably harming patients who rely on Medicaid for care but are not responsible for fraud in the program.

“It’s going to hurt a lot of people if they end up going through with this,” said Sumukha Terakanambi, a 27-year-old who has Duchenne muscular dystrophy and works as a public policy consultant with the Minnesota Council on Disability.

“Of course we support going after fraud,” Terakanambi said, but “this overly aggressive action is missing the point. It’s not punishing fraudsters. It’s punishing the people.”

Longtime Medicaid observers also doubt the federal actions will achieve their purported objective.

Jocelyn Guyer, a senior managing director with the consulting firm Manatt, recently told reporters that actions of this magnitude by the federal government are unprecedented, partly because punitive measures against states have “really never been an effective way to address fraud.”

Meanwhile, fraud prosecutions have stalled in Minnesota as the U.S. attorney’s office there grapples with the exodus of nearly half its attorneys and a surge in cases from the Trump administration’s immigration crackdown.

Despite these concerns, Centers for Medicare & Medicaid Services head Mehmet Oz said the techniques the federal government is using in Minnesota could be applied to other states, and he has launched social media campaigns alleging high-dollar public benefit fraud in California, Florida, Maine, and New York. And a February release of incomplete Medicaid data by the Trump administration’s Department of Government Efficiency appears to be part of a campaign to paint the program as riddled by fraud, Guyer said.

Andy Schneider, a research professor at Georgetown University’s Center for Children and Families, said that campaign by the administration seems particularly focused on services designed to keep people with disabilities out of institutions, and he described withholding $2 billion from Minnesota’s Medicaid program as “the nuclear option.”

A ‘Political Football’

Scrutiny of Minnesota’s public benefit programs began early in the Biden administration, years before the most recent investigations. The spotlight on the state’s Medicaid system grew after FBI raids targeting two autism treatment providers in December 2024.

The following May, an investigation by a Minneapolis TV station into Medicaid housing stabilization services in Minnesota prompted further scrutiny from federal prosecutors, and from Gov. Tim Walz.

Under the Democratic governor, the state launched investigations into 85 autism providers, ordered a third-party audit of 14 types of Medicaid services deemed to be “high-risk” for fraud, and delayed payments for those services for up to 90 days. Many of the services are ones people with disabilities receive at home, making them more difficult to monitor.  

Terakanambi worried the state’s “heavy-handed approach” would destabilize the entire home care system. While his own care was not disrupted — his parents provide the 10 hours of daily personal care he qualifies for through Medicaid — other Minnesotans with disabilities have said they experienced interruptions and have criticized the delayed payments.

In December, one man was found dead after losing his in-home care services amid the crackdown.

“We’re losing sight of the people that have done nothing wrong, that rely on these supports and services to live in the community,” said Sue Schettle, chief executive of ARRM, a Minnesota nonprofit that represents organizations supporting people with disabilities. “It becomes a political football.”

Schettle said she took her concerns about the crackdown to state officials, who have since met routinely with her and other advocates. The subsequent federal actions, however, have left her “shell-shocked,” she said.

The ‘Nuclear Option’

In December, a video posted by a conservative YouTuber, with help from state Republicans, supercharged the issue in Minnesota, alleging widespread fraud in child care centers owned by members of the Somali community. A follow-up state investigation of the child care centers that were featured in the video determined that all were “operating as expected.”

On Jan. 6, CMS’ Oz sent Walz a letter alleging Minnesota’s Medicaid program was out of compliance with federal rules on fraud, waste, and abuse, setting the stage for the Trump administration’s move to withhold over $2 billion in federal Medicaid funds to Minnesota this year, about 18% of what the state received the year before.

Minnesota is appealing.

The Republican-aligned Paragon Health Institute, a think tank that recently published a policy brief calling for similar enforcement actions across the country, applauded the federal moves.

“That will spur states to take necessary action, thus ensuring that Medicaid funds go to those who are truly eligible,” said Chris Medrano, a legal research analyst who co-authored the brief.

Georgetown’s Schneider questioned the necessity and effectiveness of withholding the money.

“I don’t see any relationship between that and actually reducing fraud against the Minnesota Medicaid program, given the state has already taken a lot of action,” he said.

In late February, Oz went further, announcing that on top of withholding $2 billion in future payments to Minnesota, the administration was also “deferring” about $260 million in federal Medicaid payments to the state.

“We have notified the state that we will give them the money, but we are going to hold it and only release it after they propose and act on a comprehensive corrective action plan to solve the problem,” Oz said at a Feb. 25 news conference with Vice President JD Vance.

Minnesota is challenging the deferment in court.

“We’re waiting for feedback from CMS on our corrective action plan, which is why we were surprised and confused when Dr. Oz said in a news conference with the vice president last week that we needed to provide one,” Minnesota Medicaid director John Connolly said at a March 3 news briefing.

‘Another Minnesota’

Oz and Vance both said during the February news conference that they are not specifically targeting Democratic-led states. Oz noted Florida has a “big fraud problem” and in mid-March sent a letter to state officials with a list of questions about their Medicaid program. Until then, the letters and most of Oz’s social media videos had been limited to California, Maine, and New York, all led by Democrats.

“We might have another Minnesota on our hands,” Oz said in a video posted the same day as a letter sent to Maine Gov. Janet Mills, a Democrat, requesting information on how the state was addressing Medicaid fraud.

“And if we’re not satisfied with their progress, we reserve the right to cut off payments entirely,” Oz said in the video.

The video and letter were prompted by a federal audit of autism services in Maine that found the state had made at least $45.6 million in improper Medicaid payments. Similar audits in Indiana, Wisconsin, and Colorado had comparable findings.

In a statement, Mills called Oz’s letter a “pretense to send ICE and other weaponized federal agents into states led by Democrats.”

CMS spokesperson Chris Krepich said the agency does not take funding actions lightly. “The focus is on strengthening oversight, improving accountability, and ensuring that vulnerable patients receive the services they are entitled to,” Krepich said.

But Terakanambi said it’s not difficult to see how federal actions like those in Minnesota could put services in jeopardy. The amount of money Minnesota could lose from the CMS actions announced this year is already equivalent to about two-thirds of the state’s rainy-day fund.

Many states are looking to reduce or even eliminate funding for home care services over much smaller budget shortfalls. And further cuts are anticipated, with congressional Republicans’ One Big Beautiful Bill Act, signed into law last year, expected to reduce federal Medicaid spending by more than $900 billion over the next decade.

“People will die,” Terakanambi said. “People will lose critical supports and will no longer be able to participate in their community the way they want to.”

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Oz, who heads the U.S. Centers for Medicare & Medicaid Services, alleged that there was approximately $3.5 billion of fraud in the hospice and home health care industry in Los Angeles County alone. “This administration under President [Donald] Trump is not going to tolerate taxpayer dollars being stolen because people aren’t paying attention anymore. We’re focused on this,” Oz said. He claimed the fraud was largely orchestrated by the “Russian, Armenian mafia” and said that most of the money spent on home and community-based services across California “might be fraudulent.”

However, CMS clarified that not all billing activities referenced by Oz were presumed to be improper. And a review of the most recent available data shows that there are hotbeds of health care fraud across the country and across practice areas, most of them allegedly perpetrated by health insurers and other domestic actors, and that California outperforms most other states in recovering fraud dollars.

As the temperature heats up in the conflict between the Trump administration and California, a handful of Republican state lawmakers have entered the fray, accusing Gov. Gavin Newsom in a March letter of allowing “rampant fraud.” Democratic state officials insist they aggressively combat fraud, and Newsom has filed a civil rights complaint against Oz, calling language in the allegations “baseless and racially charged.”

“The Trump Administration is attempting to take the issue of fraud — a very real, and national issue — and weaponize it against Democratic states,” California Attorney General Rob Bonta said in an early February statement.

Oz said on a podcast that he would halt “hundreds of millions of dollars” in payments to California if he didn’t get satisfactory answers from state officials. He and Vice President JD Vance announced in late February that they would delay about $260 million in Medicaid payments to Minnesota, another Democratic-led state, over fraud allegations there, and the state is now suing.

Oz has also launched social media campaigns alleging high-dollar public benefit fraud in Democratic-led Maine and New York. On March 17, he added a Republican-led state to his target list: Florida.

Georgetown University professor Andy Schneider, who served as a senior adviser primarily on Medicaid integrity issues during the Obama administration, said fraud has always been an issue across states, dating back decades. About $3.4 billion in Medicare and Medicaid fraud across the country was recovered in fiscal year 2023, according to the most recent report available. Insurers have paid the highest settlements in alleged health care fraud schemes.

“Bad actors trying to steal public health care funds have been around for a long time,” Schneider said.

How California Stacks Up

The federal government is responsible for Medicare, which primarily benefits older people, while Medicaid, which primarily serves people with lower incomes, is a joint federal-state program. Melissa Rumley, a spokesperson for the Department of Health and Human Services’ Office of Inspector General, said the office could not make state-by-state data on Medicare fraud available because the federal probes often cross jurisdictions.

States file annual reports on actions by Medicaid anti-fraud units that are jointly funded with the federal government and run by state attorneys general. They investigate fraud as well as abuse and neglect of Medicaid patients.

These reports provide a sense of the scale of Medicaid fraud across states. In fiscal 2024, states recovered about $1.4 billion in fraud, compared with $949 billion in total Medicaid spending, according to a report from the HHS Office of Inspector General. California recouped an outsize share, recovering more than 50% of all the criminal recoveries made by the anti-fraud units nationwide in fiscal 2024 even though the state made up only about 17% of enrollment.

California ranked fourth in the U.S. in 2024 in dollars recovered per Medicaid enrollee across civil and criminal investigations, behind the District of Columbia, Montana, and Delaware. It led all the most populous states, followed in order by Texas, Florida, and New York. (California and federal officials noted that state recovery data varies significantly year to year, often because of the length of investigations.)

Vulnerability of Hospice Care

One aspect of health care fraud that has been at the center of Oz’s attack on California is hospice fraud, which has plagued Republican and Democratic administrations.

The use of hospice, intended to provide care to patients expected to die within six months, increased by over 8% from fiscal 2020 to 2024, to about 1.84 million Medicare beneficiaries, driving up costs significantly.

To combat fraud, the Biden administration in 2023 increased oversight of hospices in California, Arizona, Nevada, and Texas. The Trump administration last year added Ohio and Georgia.

CMS spokesperson Chris Krepich did not say specifically what criteria were used to choose which states to monitor, only that the decision was based on “activity typically indicative of hospice-related fraud.” As of June, the agency had revoked the Medicare enrollment of 122 hospices in the original four states, but Krepich said a breakdown by state was not available.

While Oz stated there was some $3.5 billion of fraud in the hospice and home health care industry in Los Angeles County alone, his agency clarified that the number is for overall Medicare billing related to hospice and home health services. Krepich said that “not all billing activity referenced in the remarks is presumed to be improper” and added that the agency could not identify the amount of fraudulent activity until an “evidence-based” investigation was completed.

That’s not to say there is no truth to allegations of hospice fraud.

A state audit published in 2022 found “numerous indicators” of large-scale fraud in Los Angeles County, and a CBS News investigation highlighted nearly 500 hospices within a 3-mile radius, including 89 companies registered to a single building in Van Nuys. Bonta has acknowledged that “hospice fraud has become an epidemic in California.” He noted that state officials have been aggressively combating it for years, including with new laws.

In January, the state charged several people in Monterey County with hospice fraud. That follows hospice scam cases in Los Angeles County and San Bernardino County.

However, California public health officials are overdue in adopting emergency regulations that were supposed to be in place by this year. The state’s Department of Public Health is currently revising the regulations, according to spokesperson Mark Smith.

In the interim, the state has revoked the licenses of more than 280 hospices over the past two years and is evaluating an additional 300 hospices, according to the governor’s office. California had more than 2,800 licensed hospice agencies as of 2022, according to the state audit.

Civil Rights Complaint

Meanwhile, Newsom is pushing back on Oz. The governor filed his discrimination complaint with the Office of Civil Rights at HHS, which oversees CMS. The office said it will first decide whether it has the authority to investigate, then, if so, will gather information through interviews and documents. However, the process seems designed to aid individuals who have lost a job to discrimination, or to correct a specific policy, and it is unclear whether there could be any real-world consequences.

The governor wants the agency to address “systematic bias from their leadership,” said Newsom spokesperson Marissa Saldivar.

Krepich said CMS “does not target communities, ethnic groups, or states” and bases its decisions on “confirmed investigative findings.” The allegations of organized fraud refer to “documented criminal cases,” Krepich said, providing a link to a hospice fraud case in which California residents were convicted of using the identities of foreign nationals to steal almost $16 million from Medicare.

It’s unclear what cases Oz was referring to when he spoke of the Russian and Armenian mafia.

Ciaran McEvoy, a spokesperson for the U.S. attorney’s office for the Central District of California, which includes Los Angeles County, said it doesn’t track whether hospice fraud defendants are alleged to be foreign nationals, but he pointed to the office’s online prosecution announcements. None alleged involvement by foreign influences or organized crime.

The state audit references allegations in 2010 by the U.S. Justice Department under President Barack Obama that an “Armenian-American organized crime enterprise” was behind a nationwide health care scam.

Federal officials at the time described an “international organized crime enterprise” based in Los Angeles and New York but with roots in Russia and Armenia. The scheme involved billing for unneeded medical treatments, not hospice fraud.

A 2020 Los Angeles Times investigation revealed fraud schemes in which hospice operators recruited patients who were not actually terminally ill, then paid kickbacks to doctors who falsely certified these patients as dying so the hospices could bill Medicare. There was no mention of foreign involvement.

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Lingering pain from a car crash two months ago, on top of an already hardscrabble life, has Angulo worried about her pregnancy. So, she was relieved when a mobile street medicine van from St. John’s Community Health pulled up near her encampment last month.

“Thank God that we have them,” she said.

St. John’s, which operates 28 clinics, mostly in L.A. County, is part of the nation’s network of nonprofit community clinics that care for the poorest Americans. Around 80% of its 144,000 patients, including Angulo, have Medi-Cal, California’s version of the Medicaid program for people with low incomes or disabilities.

But federal cuts to Medicaid spending under the Republican-passed One Big Beautiful Bill Act, compounded by fiscal belt-tightening in Sacramento, could cost St. John’s up to one-third of its $240 million annual revenue, requiring cuts to services that might include street medicine, said Jim Mangia, the president and CEO.

Smaller, more cash-strapped clinics in L.A. County could face harsher consequences, including closure, if the lost funding is not replaced.

That’s why Mangia, along with a coalition of community clinics, health care workers, and advocates, is pushing for a five-year, half-cent sales tax in the nation’s most populous county to help backfill the projected loss of federal and state dollars. St. John’s has contributed at least $2 million to the campaign so far.

Louise McCarthy, president and CEO of the Community Clinic Association of Los Angeles County, said there aren’t a lot of options to save the health care system from disaster.

“Our backs are up against the wall,” she said. “This has the potential to be a game changer. It will be an absolutely significant offset to the losses.”

The L.A. County Board of Supervisors approved the proposal last month for inclusion on the June 2 primary ballot, over the objection of some cities within the county. Their leaders argued the tax would put a strain on consumers and business owners. Most of an estimated $1 billion in annual revenue generated would be used to protect safety-net health care at community clinics, hospitals, and schools.

Scrambling To Stay Afloat

Nationally, the GOP budget law is expected to cut federal Medicaid spending by $911 billion over 10 years, and it could lead to an increase of over 14 million in the number of people left uninsured. The L.A. ballot proposal is among many local and state initiatives nationwide, as clinics, hospitals, health care workers, advocates, and legislators scramble for new money to help offset the spending cuts.

In Michigan, where the federal law is projected to cost the state $32 billion over 10 years, Democratic Gov. Gretchen Whitmer’s office has proposed new or increased taxes on tobacco, vape products, online gambling, sports betting, and digital advertising, which it projects would raise hundreds of millions of dollars annually.

In Rhode Island, a group of state legislators hopes to ease some of the pain caused by the federal cuts with a package of bills that includes a tax on digital ads and a 3% surcharge on taxable incomes above roughly $640,000.

“The goal is not to replace the revenue; it’s to mitigate the damage,” said Democratic state Rep. Brandon Potter, one of the legislators involved.

In Washington, Democratic state Rep. Shaun Scott recently introduced legislation to address the loss of federal dollars with a 5% payroll tax on large companies, applied to employee salaries exceeding $125,000 a year.

In California, the GOP law will slash the federal contribution to Medi-Cal by an estimated $30 billion a year, or 25%. Enrollment in Medi-Cal could drop by 3 million by 2028 as a result of the federal and state spending cuts, according to an analysis by the UCLA Center for Health Policy Research and the University of California-Berkeley Labor Center.

In July, California will slash Medi-Cal payments that community clinics receive for certain services provided to patients with “unsatisfactory” immigration status by about $1 billion a year. Those patients include permanent residents in the country for less than five years, refugees, asylees, and other lawfully present people.

Bracing for a ‘New Reality’?

Advocates and health care experts say finding new revenue is the only way to avoid a crisis in California’s health care system.

“Are we going to let the gaps created by federal policies and state budget cuts leave millions of people uninsured?” said Laurel Lucia, deputy executive director of programs at the UC Berkeley Labor Center. “I think a lot of that question comes down to revenues.”

Some medical professionals say that new revenue is needed in the short term but that the country needs to address its notoriously expensive health care system.

“This new reality is that we have to do our work with less money going into the future,” said Hector Flores, president-elect of the Los Angeles County Medical Association. “So, this is an opportunity for us to look at how we can do things better.”

In the meantime, efforts to raise taxes for health care abound.

Voters in Santa Clara County, home to Silicon Valley, last November approved a five-year 0.625% sales tax increase to offset federal Medicaid cuts. A similar measure will be on the June ballot in Contra Costa County.

The best-known initiative, and a hotly contested one, is a union-sponsored ballot proposal in California for a one-time 5% tax on the state’s more than 200 billionaires. Democratic Gov. Gavin Newsom strongly opposes it; Sen. Bernie Sanders (I-Vt.) stumped for it in California recently and has promised to introduce a national version in Congress.

Proponents of the temporary wealth tax say it would raise $100 billion, which would mostly be used to backfill lost federal and state dollars in Medi-Cal and other safety-net programs. Proponents are trying to collect nearly 875,000 signatures needed to get it on the November ballot.

“We are on the precipice of a collapse of our health care system. So the most fortunate among us pay a modest tax that will hold us over and allow us to figure out a long-term solution,” said Suzanne Jimenez, chief of staff for Service Employees International Union-United Healthcare Workers West, the measure’s chief sponsor. “They would still be incredibly wealthy after that.”

Billionaires Push Back

The plan has stirred considerable controversy, not just in the Golden State but nationwide, and has generated strong resistance from billionaires and others.

Critics argue the measure could prompt billionaires to leave California, putting a damper on innovation, jobs, and tax receipts. And, some warn, the measure could end up in a legal quagmire, as those deemed liable to pony up challenge it on multiple fronts.

“If this passed, you would expect it to be tied up in court for some time,” said Jared Walczak, a visiting fellow at the California Tax Foundation. “It is fairly plausible that no revenue could come in for a number of years, if there’s ever any revenue at all.”

The prospect of such complications has led some health care advocates to focus instead on local initiatives that could start generating revenue more quickly, such as the proposed sales tax in L.A. County.

That one has critics too, including leaders of multiple cities within the county who pleaded with supervisors to reject a proposal they argued would add to the affordability worries of consumers and put a strain on businesses.

Kathryn Barger, a Republican and the only L.A. County supervisor to oppose putting the measure on the June ballot, said in a statement that the proposed tax would make the county “less affordable for families and less appealing for consumers to shop and businesses to operate.”

But supporters say safety-net health care is already feeling the impact of diminished funding. Last month, for example, L.A. County’s Department of Public Health announced it was closing seven clinics due to $50 million in federal, state, and local funding cuts.

Medi-Cal enrollees are worried, too. “We get a lot of calls from panicked patients afraid they’re going to lose their Medi-Cal. Dozens of calls a day, hundreds of calls a week,” said St. John’s Mangia.

“We tell them that we’re working on a solution and hopefully we’ll have that solution come June.”

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Relatives described the unicorn-loving child as smart, affectionate, and occasionally rascally. Before she learned the alphabet, she had figured out how to find her favorite show, Blippi, on a phone. She was known to sneak butter from the fridge to enjoy a few finger licks.

But then her limbs started jerking. A spinal tap revealed measles in her cerebrospinal fluid. The virus she probably had as an infant had secretly made its way to her brain. Now 8 years old, Deepanwita is paralyzed, unable to talk.

Measles causes complications — ranging from diarrhea to death — in 3 in 10 infected people, according to the Infectious Diseases Society of America. Some are immediate, while others take weeks or months to appear. The one Deepanwita is experiencing, subacute sclerosing panencephalitis, or SSPE, typically takes years to rear its head.

“People think, ‘Oh, you know, if we get measles, then we’ll be fine, because I know my neighbor had it and they’re fine,’” said Yasmin Khakoo, who leads the national Child Neurology Society but spoke to KFF Health News in her capacity as a New York City doctor with expertise in neurologic conditions.

Measles, though, can be dangerous: A 7-year-old in South Carolina will have to relearn how to walk after enduring one of the more immediate complications, brain swelling. And every so often, the virus plants a ticking time bomb in the nervous system. A person can recover from measles and continue life as usual, no longer contagious and without any identifiable symptoms — sometimes for a decade or more — before problems appear. While some patients end up severely disabled for a while, Khakoo said, the condition is almost always fatal.

Before the advent of widespread and effective vaccines, the complication occurred enough in the U.S. that in the 1960s a doctor created a national registry of SSPE patients. Researchers now estimate about 1 in 10,000 people who get measles will develop SSPE, but the risk is significantly higher for those who contract measles before age 5. Populous nations where the virus is endemic, including India, see cases routinely.

Now, doctors and researchers fear that as vaccination rates drop and measles spreads in the U.S., cases of this debilitating complication will also rise here. Since the start of 2025, the Centers for Disease Control and Prevention has recorded over 3,500 measles cases — more than in the entire preceding decade — mostly people who were unvaccinated. Many were children. Last year, Connecticut doctors diagnosed a 6-year-old with SSPE, and in California, a school-age child who’d had measles as an infant died of it.

“We are likely to see SSPE cases going forward, especially if we don’t get this under control,” said Adam Ratner, a member of the American Academy of Pediatrics’ Committee on Infectious Diseases and author of the book Booster Shots.

Concern about SSPE was great enough that in January, the Child Neurology Society published a video to educate U.S. clinicians about the condition, and doctors who have seen such cases are warning their peers.

“We don’t have a way of knowing who’s going to get it, and we don’t have a way of very effectively treating it,” said Aaron Nelson, a professor of neurology with the New York University Grossman School of Medicine. “The one best thing that we can do, ideally, is to prevent children from having to go through it in the first place.”

The recommended two-dose measles vaccine slashes an exposed person’s risk of getting the contagious virus from 90% to 3% — and thus reduces the chance of SSPE. The vaccines carry small risks of febrile seizure and a bleeding condition, but measles itself has a higher risk of causing both.

Cases in the U.S.

A 2017 study of California children who developed SSPE after a measles outbreak there years ago determined that 1 case is diagnosed for about every 1,400 known cases of measles in children under age 5, and 1 for every 600 infected babies.

The researchers also found that, over the years, doctors had missed some cases among patients who had died with undiagnosed neurologic illness.

The possibility that future cases could go undiagnosed spurred Nava Yeganeh and her colleagues to publish a news release in September when a Los Angeles County child died of SSPE.

“We’ve had very few cases of measles in the last 25 years in this country,” said Yeganeh, who is the medical director with the Vaccine Preventable Disease Control Program at the Los Angeles County public health department and has had two patients with SSPE. “Unfortunately, that’s changing, and so we wanted to make sure that everyone was aware of this long-term complication.”

The California child who died had gotten measles as an infant, Yeganeh said, before the child could receive the vaccine. Measles is highly contagious, so at least 95% of the population must be immune to it to protect vulnerable people — including babies too young to vaccinate and people who are immunocompromised — from infection.

“This is an example of someone who did everything right, wanted to protect their child against this infection, and unfortunately ended up losing their child because we didn’t have herd immunity for them,” Yeganeh said.

Shortly after Yeganeh’s group published the news release in California, Nelson was working to get the word out, too.

He had recently seen a 5-year-old whose family had traveled to the U.S. for medical care after the child started stumbling, jerking, hallucinating about bugs and animals, and having seizures. The child had contracted measles as an infant and had been too young to be vaccinated. Nelson diagnosed the child with SSPE.

“Imagine that: Having a child who is healthy and happy, moving to talking less and less, eventually not able to walk,” Nelson said. “It’s a very sad thing.”

He thought he would encounter the condition only in medical school textbooks, as a relic of the past. Instead, in October he found himself presenting the case at the Child Neurology Society’s national conference and participating in the society’s video about the condition. “I’ve now seen something I shouldn’t have ideally seen ever in my career,” he said.

Warning Signs From India

Globally, the number of measles outbreaks has increased in recent years, and physicians in places including the U.K. and Italy have recently seen clusters of SSPE.

The high human cost of measles’ spread is especially evident in India. While total cases aren’t tracked, about 200 families caring for people with SSPE, including Deepanwita’s, are in a single chat group in the Bangalore area.

In New Delhi, Sheffali Gulati studies SSPE and sees about 10 new patients a year with the condition, what she calls the “delayed echo” of measles outbreaks. The youngest she has seen was 3 years old.

“The ages are coming down, and a death or a vegetative state can develop as soon as in six months to five years of onset,” said Gulati, who leads the pediatric neurology program at the All India Institute of Medical Sciences and until recently led India’s Association of Child Neurology.

Gulati hasn’t found any treatments that reverse SSPE’s course, only some that slow its progress. She’s found herself counseling parents: It’s catastrophic, it’s not their fault, and they can do nothing but accept it.

Deepanwita’s relatives try to find joy where they can. They think they noticed the girl smiling when her favorite cousin called recently. Anindita Dasgupta, her mother, said Deepanwita moves her hands and feet on her own and sometimes turns her head, especially when her father enters the room. The girl communicates with her parents through her eyes and a few sounds.

But it’s far from where she was in 2022: At a cousin’s birthday, a few months before noticeable symptoms started, Deepanwita started the birthday song and sang the loudest.

At her own 8th-birthday gathering last year, Deepanwita, wearing a pink eyelet dress and a nasal tube, could only blink and move her eyes as she sat propped up before two cakes that she would not be able to eat. She can no longer swallow, so her mom dabbed a bit of icing on her tongue.

Research That Shouldn’t Be Needed

Roberto Cattaneo, a molecular biologist at the Mayo Clinic in Rochester, Minnesota, has been studying SSPE for years. He recently used postmortem brain tissue to map how the measles virus can spread from the frontal cortex to colonize the entire brain. Still, he said it’s a “black box” what exactly measles is doing in those dormant years between the initial infection and when the symptoms of neurologic damage crop up.

It’s possible the virus replicates in the brain that whole time, undetected, killing off neurons. But with so many neurons in the human brain — 10 times as many as people living on the planet — the brain may find a way to adjust, Cattaneo said, until finally it can’t anymore.

He’s applying for funding to continue research on the disease and possible treatments, though ultimately, he wishes he didn’t have to. The tools to obliterate the condition already exist.

“The problem could be solved with vaccination,” Cattaneo said. The U.S. should have no cases of SSPE, he said. “It’s just painful.”

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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Engineered quartz countertops have surged in popularity in the home renovation market, with industry analysts estimating the global engineered stone market at around $30 billion. It’s continuing to expand as quartz surfaces replace natural stone in kitchens in the United States and worldwide.

When González was working, the dust that rose from his saw didn’t look extraordinary. It settled on his clothes, in his hair, across the shop floor. In a small countertop fabrication shop, he cut marble and granite before shifting to engineered stone after the 2008-09 recession, when demand for cheaper quartz countertops surged.

But the crystalline silica released while the engineered stone was cut and polished also settled into his lungs, scarring them beyond repair. What began as breathlessness hardened into silicosis, an irreversible disease that stiffens the lungs until even ordinary movement becomes effort.

A lung transplant was his path forward. The procedure can extend survival, but it redraws the boundaries of a life: anti-rejection drugs every day, constant monitoring, vulnerability to infection, the knowledge that breathing depends on the fragile acceptance of another person’s donated organ.

González, who was diagnosed with silicosis in 2023, is not alone in dealing with a disease that once was associated with miners at the end of long careers. It’s now prevalent among the much younger, often Hispanic men who work in this industry, physicians and public health officials say.

In the United States, cases are appearing in countertop fabrication shops from California to Texas, Florida, and the Northeast. Because silicosis is not a nationally reportable disease and surveillance varies by state, no comprehensive national count exists. But clinicians who treat occupational lung disease say the number of workers — often men in their 30s and 40s — diagnosed after cutting engineered stone has risen sharply over the past decade.

As of early March, California had identified 519 confirmed cases of engineered-stone-associated silicosis and 29 deaths since 2019. The median age at diagnosis is 46; at death, 49.

Doctors don’t debate whether working with engineered stone can scar lungs.

Manufacturers argue, though, that proper ventilation, wet cutting, and respirators can make fabrication safe. Workers, physicians, and plaintiffs’ attorneys counter that a material composed almost entirely of crystalline silica may be impossible to handle safely at scale.

“This is comparable to the tobacco industry saying cigarettes are safe,” said epidemiologist David Michaels, an assistant labor secretary under President Barack Obama who led the Occupational Safety and Health Administration.

More than 370 lawsuits have been filed by workers who say engineered stone manufacturers failed to warn employees about the risks or sold a product that cannot be fabricated safely. At the same time, members of Congress are considering legislation that would largely shield manufacturers from liability in those cases, turning a workplace health crisis into a national debate over regulation, responsibility, and the limits of civil litigation.

Gustavo Reyes, 36, is part of that debate. Like González, he spent the early years of his career cutting marble and granite before shifting to engineered stone, a quartz-based material that can contain up to 95% silica and generates far more hazardous dust when cut.

In the shop, he said, cutting was done with water to control the dust. But finishing work — sanding and shaping — generated heavy dust. He said he wore disposable respirator masks or a reusable elastomeric respirator with filters. A door was kept open. Fans ran overhead.

When he was diagnosed in 2021, he did not know what silicosis meant. The doctor told him that there was no medication and that he had three to five years to live. He received a lung transplant in 2023.

Asked who he believes is responsible, Reyes answered: “The industries who created the artificial stone, the product.” Manufacturers dispute that characterization. Major companies say engineered stone can be fabricated safely when employers follow OSHA dust controls, including wet cutting, ventilation, and respirator use.

An Old Disease, Reengineered

Silicosis is not new. It was synonymous with mining disasters and sandblasting, most notoriously in the Hawks Nest Tunnel tragedy, when hundreds of workers drilling through silica-rich rock in West Virginia in the early 1930s developed acute silicosis after months of unprotected exposure to dust. In 1938, Labor Secretary Frances Perkins advised that the disease could be prevented if dust controls were conscientiously applied.

What is new is the industry in which it has resurfaced.

Engineered stone, often marketed as “quartz,” is typically composed of crushed quartz bound with resins and pigments. Unlike marble, which contains little crystalline silica, engineered slabs contain very high levels of the substance.

Cutting changes the material.

“When you grind it, when you cut it, you’re pulverizing it,” said Robert Blink, an occupational and environmental medicine specialist who treats patients with advanced silicosis in Chicago and is a member of the Western Occupational and Environmental Medical Association. “You’re weaponizing the silica.”

Power tools fracture the surface into respirable particles small enough to lodge deep in the lungs. Repeated exposure triggers inflammation and fibrosis. Once scarring begins, it doesn’t reverse.

What Happens When You Look for It

In California, physicians say the pattern emerged gradually.

Robert Harrison, an occupational medicine physician at the University of California-San Francisco, helped identify the first cluster of engineered stone silicosis cases in California in 2019 after several workers from the same countertop fabrication shop died or were diagnosed with the disease. He described the crisis as “the largest outbreak of silicosis in decades.” What initially appeared as isolated cases of unexplained lung scarring in young men resolved into a recognizable occupational epidemic once work histories were examined.

Jane Fazio, a pulmonologist at UCLA, recalls seeing advanced fibrosis in otherwise healthy workers. “They have families. They were working full-time,” she said. Some experienced respiratory failure within a few years.

When doctors compared work histories, the pattern became unmistakable: Many of the men had worked in small shops cutting and polishing engineered stone countertops.

Sheiphali Gandhi, an occupational and environmental pulmonologist at UCSF, warned that the true burden remains uncertain. “We’re missing cases,” she said. “There’s no national surveillance system for this.”

California designated silicosis a reportable disease in 2025. Since 2019, statewide surveillance has identified hundreds of cases linked to engineered stone. The numbers probably underestimate the toll, though California’s dashboard makes the illness visible.

Outside California, there is no comparable tracking.

Early Warnings

California was not the first place this happened.

The earliest modern alarm came from Israel. Caesarstone, a company founded on a kibbutz in the late 1980s, helped popularize quartz countertops globally.

Israeli physicians began documenting aggressive silicosis in young countertop workers as early as 1997.

“We had never seen this before,” said Mordechai Kramer, a retired pulmonologist who previously worked at Rabin Medical Center in Israel. “In classic silicosis, you expect long exposure, decades. Here, it was much shorter.”

Several patients required lung transplantation.

Despite the warning signs, the market continued to expand.

Australia confronted the same pattern in the late 2010s.

Rather than wait for sporadic diagnoses, Australian regulators launched systematic CT-based screening of artificial-stone workers. Disease prevalence was far higher than anticipated.

Ryan Hoy, a respiratory physician and occupational health researcher at Australia’s Monash University, described severe disease in workers with relatively short exposures.

Authorities examined whether wet cutting, ventilation, and respirators could reduce exposure sufficiently. They ultimately concluded that even with controls, fabrication of high-silica engineered stone posed unacceptable risk.

In 2024, Australia prohibited the manufacture, supply, and installation of engineered stone containing high levels of crystalline silica. Manufacturers pivoted toward lower- and zero-silica formulations.

In the United States: Who’s To Blame?

Fabrication in the U.S. continues under OSHA’s silica standard, which relies on exposure limits, wet cutting, ventilation, and respiratory protection. Manufacturers argue that compliance works and that the problem lies with shops that fail to follow the rules.

OSHA first adopted silica limits in 1971 based on research from mining, quarrying, and foundry work. Although the agency updated the rule in 2016, it regulates crystalline silica broadly and does not distinguish between natural stone and high-silica engineered quartz.

The regulatory debate has now spilled into Congress. The Protection of Lawful Commerce in Stone Slab Products Act, introduced in September by Rep. Tom McClintock (R-Calif.), would largely shield manufacturers and distributors of engineered stone from civil lawsuits arising from the manufacture or sale of their products. McClintock’s office did not respond to a request for comment.

The bill was the subject of a January House Judiciary subcommittee hearing.

Supporters of the measure argue that manufacturers should not be held liable for injuries caused by employers who fail to follow OSHA standards. Opponents warn that removing litigation pressure would eliminate one of the few mechanisms capable of driving product reform if the material itself cannot be safely handled.

Michaels, the former OSHA official, sees the stakes as historical. “Litigation drives change,” he said, pointing to past battles over asbestos and tobacco.

Plaintiffs’ attorneys argue that compliance with the OSHA silica standard does not eliminate risk.

“It’s not a few bad actors,” said Raphael Metzger, a product liability attorney who has filed roughly 200 silicosis-related injury cases and a class action seeking medical monitoring. He said the issue is the product’s composition, not isolated regulatory noncompliance.

James Nevin, a tort attorney representing workers in silicosis cases, framed the congressional debate as a fight over accountability. “When it comes to causation, there’s no question,” he said, arguing that the wave of cases explains why manufacturers are now seeking what he calls “a manufacturer bailout.”

In mid-2025, Caesarstone US introduced its first products containing less than 1% silica. In response to questions, Irene Williams, a spokesperson for Caesarstone, said, “The company is not responding as these are matters of pending litigation.”

The U.S. engineered stone market is dominated by a handful of large brands — including Caesarstone, Spain-based Cosentino, and U.S.-based Cambria — while the volume of slabs imported from Asian manufacturers is growing.

Cosentino, too, is moving to low-silica products: “One third of the portfolio, including most new collections, contain less than 10% of crystalline silica,” said Kamela Kettles, a Cosentino spokesperson. “Cosentino will not be providing additional commentary at this time,” she said.

Commenting on behalf of Cambria, Mark Duffy, a communications consultant for the company, wrote, “Reckless employers are criminally violating the law, exposing workers to deadly working conditions.” He added that engineering and administrative controls, when properly used, are effective in reducing exposures below OSHA limits and said Cambria maintains exposures below the OSHA Action Level in its own facilities.

While Caesarstone and Cosentino are headquartered overseas, Cambria is based in Minnesota. Its chief executive, Marty Davis, has been a major Republican political donor, contributing millions of dollars to President Donald Trump’s election campaigns as well as to other Republican candidates and political action committees, according to federal campaign finance records. Davis has also contributed to the campaign of Rep. Brad Finstad (R-Minn.), a co-sponsor of the legislation. Finstad’s office did not respond to a request for comment.

Nevin, the attorney, said the bill would give manufacturers “free rein” from civil liability.

He also questions whether regulatory enforcement alone can address the problem. Even before the Trump administration’s funding and staffing cuts, “you had a better chance of being struck by lightning than being visited by OSHA,” he said, arguing that inspections are too infrequent to prevent disease in an industry composed largely of small shops.

Breathing on Borrowed Time

For González, the debate arrives after the fact. The dust he inhaled has already reshaped his life.

And Reyes’ transplanted lungs may last years, but not decades. The median survival time for transplanted lungs is about eight years, UCSF’s Gandhi said.

Reyes said he hopes people shopping for countertops understand that buying artificial stone “will harm the worker. The one who cuts it, the one who manufactures 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.

USE OUR CONTENT

This story can be republished for free (details).