Most of the 24 million people in Affordable Care Act health plans face a potential one-two punch next year — double-digit premium increases along with a sharp drop in the federal subsidies that most consumers depend on to buy the coverage, also known as Obamacare.

Insurers want higher premiums to cover the usual culprits — rising medical and labor costs and usage — but are tacking on extra percentage point increases in their 2026 rate proposals to cover effects of policy changes advanced by the Trump administration and the Republican-controlled Congress. One key factor built into their filings with state insurance departments: uncertainty over whether Congress allows more generous, covid-era ACA tax subsidies to expire at the end of December.

“The out-of-pocket change for individuals will be immense, and many won’t actually be able to make ends meet and pay premiums, so they will go uninsured,” said JoAnn Volk, co-director of the Center on Health Insurance Reforms at Georgetown University.

Especially if the higher subsidies expire, insurance premiums will be among the first financial pains felt by health care consumers after policy priorities put forward by President Donald Trump and the GOP. Many other changes — such as additional paperwork requirements and spending cuts to Medicaid — won’t occur for at least another year. But spiking ACA premiums, as the nation heads into key midterm elections, invites political pushback. Some on Capitol Hill are exploring ways to temper the subsidy reductions.

“I am hearing on both sides — more from Republicans, but from both the House and Senate” — that they are looking for levers they can pull, said Pennsylvania-based insurance broker Joshua Brooker, who follows legislative actions as part of his job and sits on several insurance advisory groups.

In initial filings, insurers nationally are seeking a median rate increase — meaning half of the proposed increases are lower and half higher — of 15%, according to an analysis for the Peterson-KFF Health System Tracker covering 19 states and the District of Columbia. KFF is a national health information nonprofit that includes KFF Health News.

That’s up sharply from the last few years. For the 2025 plan year, for example, KFF found that the median proposed increase was 7%.

Health insurers “are doing everything in their power to shield consumers from the rising costs of care and the uncertainty in the market driven by recent policy changes,” wrote Chris Bond, a spokesperson for AHIP, the industry’s lobbying group. The emailed response also called on lawmakers “to take action to extend the health care tax credits to prevent skyrocketing cost increases for millions of Americans in 2026.”

Neither the White House nor the Department of Health and Human Services responded to requests for comment.

These are initial numbers and insurance commissioners in some states may alter requests before approval.

Still, “it’s the biggest increase we’ve seen in over five years,” said analysis co-author Cynthia Cox, a KFF vice president and director of its Program on the ACA.

Premiums will vary based on where consumers live, the type of plan they choose, and their insurer.

For example, Maryland insurers have requested increases ranging from 8.1% to 18.7% for the upcoming plan year, according to an analysis of a smaller set of insurers by Georgetown University researchers. A much larger swing is seen in New York, where one carrier is asking for less than a 1% increase, while another wants 66%. Maryland rate filings indicated the average statewide increase would shrink to 7.9% from 17.1% — if the ACA’s enhanced tax credits are extended.

Most insurers are asking for 10% to 20% increases, the KFF report says, with several factors driving those increases. For instance, insurers say underlying medical costs — including the use of expensive obesity drugs — will add about 8% to premiums for next year. And most insurers are also adding 4% above what they would have charged had the enhanced tax credits been renewed.

But rising premiums are just part of the picture.

A bigger potential change for consumers’ pocketbooks hinges on whether Congress decides to extend more generous tax credits first put in place during President Joe Biden’s term as part of the American Rescue Plan Act in 2021, then extended through the Inflation Reduction Act in 2022.

Those laws raised the subsidy amounts people could receive based on their household income and local premium costs and removed a cap that had barred higher earners from even partial subsidy assistance. Higher earners could still qualify for some subsidy but first had to chip in 8.5% of their household income toward the premiums.

Across the board, but especially among lower-income policyholders, bigger subsidies helped fuel record enrollment in ACA plans.

But they’re also costly.

A permanent extension could cost $335 billion over the next decade, according to the Congressional Budget Office.

Such an extension was left out of the policy law Trump signed on July 4 that he called the “One Big Beautiful Bill.” Without action, the extra subsidies will expire at the end of this year, after which the tax credits will revert to less generous pre-pandemic levels.

That means two things: Most enrollees will be on the hook to pay a larger share of their premiums as assistance from federal tax credits declines. Secondly, people whose household income exceeds four times the federal poverty level — $84,600 for a couple or $128,600 for a family of four this year — won’t get any subsidies at all.

If the subsidies expire, policy experts estimate, the average amount people pay for coverage could rise by an average of more than 75%. In some states, ACA premiums could double.

“There will be sticker shock,” said Josh Schultz, strategic engagement manager at Softheon, a New York consulting firm that provides enrollment, billing, and other services to about 200 health insurers, many of which are bracing for enrollment losses.

And enrollment could fall sharply. The Wakely Consulting Group estimates that the combination of expiring tax credits, the Trump law’s new paperwork, and other requirements will result in ACA enrollment dropping by as much as 57%.

According to KFF, insurers added premium increases of around 4% just to cover the expiration of the enhanced tax credits, which they fear will lead to lower enrollment. That would further raise costs, insurers say, because people who are less healthy are more likely to grit their teeth and reenroll, leaving insurers with a smaller, but sicker, pool of members.

Less common in the filings submitted so far, but noticeable, are increases pegged to Trump administration tariffs, Cox said.

“What they are assuming is tariffs will drive drug costs up significantly, with some saying that can have around a 3-percentage-point increase” in premiums as a result, she said.

Consumers will learn their new premium prices only late in the fall, or when open enrollment for the ACA begins on Nov. 1 and they can start shopping around.

Congress could still act, and discussions are ongoing, said insurance broker Brooker.

Some lawmakers, he said, are consulting with the CBO about the fiscal and coverage effects of various scenarios that don’t extend the subsidies as they currently exist but may offer a middle ground. One possibility involves allowing subsidies for families earning as much as five or six times the poverty level, he said.

But any such effort will draw pushback.

Some conservative think tanks, such as the Paragon Health Institute, say the more generous subsides led people to fudge their incomes to qualify and led to other types of fraud, such as brokers signing people up for ACA plans without authorization.

But others note that many consumers — Democratic and Republican — have come to rely on the additional assistance. Not extending it could be risky politically. In 2024, 56% of ACA enrollees lived in Republican congressional districts, and 76% were in states won by Trump.

Allowing the enhanced subsidies to expire could also reshape the market.

Brooker said some people may drop coverage. Others will shift to plans with lower premiums but higher deductibles. One provision of Trump’s new tax law allows people enrolled in either “bronze” or “catastrophic”-level ACA plans, which are usually the cheapest, to qualify for health savings accounts, which allow people to set aside money, tax-free, to cover health care costs.

“Naturally, if rates do start going up the way we anticipate, there will be a migration to lower-cost options,” Brooker said.

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.

Last year in Massachusetts, after finding lumps in her breast, Jessica Chen went to Lowell General Hospital-Saints Campus, part of Tufts Medicine, for a mammogram and sonogram.

Before the screenings, she asked the hospital for the estimated patient responsibility for the bill using her insurance, Tufts Health Plan. Her portion, she was told, would be $359 — and she paid it.

She was more than a little surprised weeks later to receive a bill asking her to pay an additional $1,677.51. “I was already trying to stomach $359, and this was many times higher,” Chen, a physician assistant, told me.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Irena Hwang | The New York Times

Rehab hospitals that help people recover from major surgeries and injuries have become a highly lucrative slice of the health care business. But federal data and inspection reports show that some run by the dominant company, Encompass Health Corp., and other for-profit corporations have had rare but serious incidents of patient harm and perform below average on two key safety measures tracked by Medicare.

Yet even when inspections reveal grave cases of injury, federal health officials do not inform consumers or impose fines the way they do for nursing homes. And Medicare doesn’t provide easy-to-understand five-star ratings as it does for general hospitals.

In the most serious problems documented by regulators, rehab hospital errors involved patient deaths.

In Encompass Health’s hospital in Huntington, West Virginia, Elizabeth VanBibber, 73, was fatally poisoned by a carbon monoxide leak during construction at the facility.

At its hospital in Jackson, Tennessee, a patient, 68, was found dead overnight, lying on the floor in a “pool of blood” after an alarm that was supposed to alert nurses that he had gotten out of bed had been turned off.

In its hospital in Sioux Falls, South Dakota, a nurse gave Frederick Roufs, 73, the wrong drug, one of 26 medication errors the hospital made over six months. He died two days later at another hospital.

“I can still see Fred laying in the bed as they shut each little machine off,” said his widow, Susan Roufs. “They clicked four of them, and then the love of my life was gone.”

Encompass, which owns 168 hospitals and admitted 248,000 patients last year, has led the transformation of this niche industry. In 2023, stand-alone for-profit medical rehabilitation hospitals overtook nonprofits as the places where the majority of annual patient admissions occur, a KFF Health News and New York Times analysis found. A third of all admissions were to Encompass hospitals. Such facilities are required to provide three hours of therapy a day, five days a week.

Across the nation, there are now nearly 400 stand-alone rehab hospitals, the bulk of which are for-profit. These hospitals collectively generate profits of 10%, more than general hospitals, which earn about 6%, and far more than skilled nursing homes, which make less than 0.5%, according to the most recent data from the Medicare Payment Advisory Commission, an independent congressional agency.

At the same time, the number of small, specialized units within acute care hospitals — where most rehab used to be provided — has dwindled. There are now around 800 of those, and most are nonprofits.

In its latest annual report, Encompass, which is publicly traded, reported an 11% net profit in 2024, earning $597 million last year on revenues of $5.4 billion.

Federal data on the performance of about 1,100 of the rehab facilities show Encompass tends to be better at helping most patients return home and remain there. In a two-year period ending in September 2023, Medicare rated 233 rehab facilities as performing better than the national rate for this major metric, called “discharge to community.” Most rehabs with better community discharge rates are for-profit, and Encompass owns 79 of them.

But data from Medicare also reveals Encompass owns many of the rehabs with worse rates of potentially preventable, unplanned readmissions to general hospitals. Medicare evaluates how often patients are rehospitalized for conditions that might have been averted with proper care, including infections, bedsores, dehydration, and kidney failures.

Encompass accounts for about 1 in 7 rehab facilities nationally, but owned 34 of the 41 inpatient rehab facilities that Medicare rated as having statistically significantly worse rates of potentially preventable readmissions for discharged patients. (Overall, rates of readmission after discharge ranged from 7% to 12%, with a median of 9%.)

And it owned 28 of the 87 rehab facilities — 65 of which were for-profit — that had worse rates of potentially preventable readmissions to general hospitals during patient stays. (The median for these kinds of readmissions was 5%, and rates for individual rehabs ranged from 3% to 9%.)

Patrick Darby, the executive vice president and general counsel of Encompass, strongly defended the company’s record in written responses to questions. He dismissed Medicare’s readmissions ratings of “better,” “worse,” and “no different than the national rate” as “a crude scoring measure” and said “performance is so similar across the board.” He called the violations found during health inspections “rare occurrences” that “do not support an inference of widespread quality concerns.”

“The simplest and most accurate reason for EHC’s success is that our hospitals provide superior care to patients,” he said, referring to Encompass by its corporate initials.

Chih-Ying Li, an associate professor of occupational therapy at the University of Texas Medical Branch at Galveston School of Health Professions, said in an interview that a research study she conducted found the profit status of a rehab facility was the only characteristic associated with higher unplanned readmissions.

“The finding is pretty robust,” she said. “It’s not like huge, huge differences, but there are differences.”

Alarming mistakes

VanBibber was admitted to Encompass’ Huntington hospital in 2021 for therapy to strengthen her lungs. At the time, the hospital was undergoing a $3 million expansion, and state regulators had warned the company that areas of the hospital occupied by patients had to be isolated from the construction “using airtight barriers,” according to a health inspection report.

In her room, which was about 66 feet from the construction zone, she began having trouble breathing, the report said. When she told the staff, they ignored her and shut her door, according to a lawsuit brought by her estate. Staff members eventually noticed that she was “lethargic and gasping for air,” and called 911.

When the emergency medical squad arrived, the carbon monoxide detectors they wore sounded. By that time, VanBibber’s blood oxygen levels were dangerously low, the inspection report said. She died three days later from respiratory failure and carbon monoxide poisoning, according to the inspection report and the lawsuit. A plumber had been using a gas-powered saw in the construction area, but there were no carbon monoxide detectors in the hallways, the report said.

In court papers, Encompass and its construction contractors denied negligence for VanBibber’s death. The case is pending.

Inspectors determined Encompass failed to maintain a safe environment for all patients during construction and didn’t properly evaluate other patients for signs of poisoning, the report said.

Since 2021, the federal Centers for Medicare and Medicaid Services, or CMS, which oversees health inspections, has found that 10 Encompass hospitals, including the one that cared for VanBibber, had immediate jeopardy violations, federal records show. Such violations — like the ones that Medicare also found in connection with the deaths of Roufs and the patient who fell after leaving his bed — mean a hospital’s failure to comply with federal rules has put patients at risk for serious injury, serious harm, serious impairment, or death.

Darby, the general counsel for Encompass, said the company regretted any clinical problems and had promptly addressed all such findings to the satisfaction of inspectors. He said Encompass that has an “excellent compliance record,” including superior results from its accreditation agency, and that its overall number of health citations was tiny given how many hospitals Encompass owns and how many patients it treats.

Six other corporate-operated for-profit hospitals were also cited, while none of the 31 stand-alone nonprofit rehab hospitals received such violations from 2021 to 2024. (Inspection reports for general hospitals do not systematically specify in which part of the building a violation occurred, so rehab unit violations cannot be identified.)

An alert called a bed alarm was at the root of immediate jeopardies at Encompass hospitals in Morgantown, West Virginia, and Jackson, Tennessee. The devices are pressure- and motion-sensitive and emit a sound and display a light to alert staff members that someone at a high risk of falls has left his or her bed.

In its Morgantown hospital, a nurse technician discovered a patient face down on the floor with a large gash on her head after a defective alarm did not go off, an inspection report said. After she died, the nurse told inspectors: “We are having a lot of problems with the bed alarms.”

Medicare is not authorized by law to fine rehab hospitals for safety rule violations, even ones involving deaths uncovered during inspections, as it has done with nearly 8,000 nursing homes during the last three years, imposing average fines of about $28,000.

The only option is to entirely cut off a rehab hospital’s reimbursement for all services by Medicare and Medicaid, which cover most patients. That step would most likely put it out of business and is almost never used because of its draconian consequences.

“Termination is typically a last resort after working with the provider to come back into compliance,” Catherine Howden, a CMS spokesperson, said in an email.

As a result, because there’s no graduated penalty, even the most serious — and rare — immediate jeopardy violations effectively carry no punishments so long as the hospital puts steps in place to avert future problems.

“Only having a nuclear weapon has really hurt patient safety,” said Michael Millenson, a medical quality advocate.

One immediate jeopardy incident did result in a punishment, but only because the hospital was in California, which allows its health department to issue penalties. Encompass’ Bakersfield hospital paid a $75,000 fine last year for failing to control the blood sugar of a patient who died after her heart stopped.

Rapid growth and a troubled history

Encompass has accelerated its expansion in recent years and now operates in 38 states and Puerto Rico. It plans to open 17 more hospitals in Arizona, Connecticut, Florida, Georgia, Maine, Pennsylvania, South Carolina, Texas, and Utah by the end of 2027, according to its latest report.

It frequently moves into new markets by persuading local nonprofit hospitals to shutter their rehab units in exchange for an equity stake in a newly built Encompass hospital, company executives have told investors.

The president of Encompass, Mark Tarr, calls it a “win-win proposition”: The local hospitals can use their emptied space for a more lucrative line of service and Encompass gets a “jump start” into a new market, with partner hospitals often referring patients.

Tarr, who was paid $9.3 million in compensation last year, told investors that Encompass requires that the existing hospitals sign a noncompete deal. Sixty-seven Encompass hospitals are joint ventures, mostly with nonprofit hospitals as investors, according to the company’s June financial filing, the most recent available.

Darby said the company’s profits allow it to build hospitals in areas that lack intensive inpatient rehabilitation and improve existing hospitals. “High-quality patient care is not only consistent with shareholder return, but quality and shareholder return are in fact critical to one another,” he said.

The success of Encompass is particularly notable given that it barely survived what experts said was one of the largest modern accounting scandals in 2003.

The Securities and Exchange Commission charged that the company, then known as HealthSouth, overstated earnings by $2.7 billion to meet Wall Street analyst quarterly expectations, leading to the ouster of its founder and directors. In 2004, the company agreed to pay the government $325 million to settle Medicare fraud allegations without admitting wrongdoing. Darby credited the company’s new leaders for obtaining a $2.9 billion judgment on behalf of shareholders against the company’s founder.

The company changed its name to Encompass in 2018 after acquiring Encompass Home Health and Hospice. In 2019, the Justice Department announced the company had agreed to pay $48 million to settle whistleblower lawsuit claims that it misdiagnosed patients to get higher Medicare reimbursements, and admitted patients who were too sick to benefit from therapy. The company denied any wrongdoing, blaming independent physicians who worked at its hospitals. Darby said Encompass settled the case only to “avoid more years of expense and disruption.” He said the Justice Department never filed a lawsuit despite years of investigation.

Medication harms

Rehab hospital inspection reports are not posted on Care Compare, Medicare’s online search tool for consumers. KFF Health News had to sue CMS under the Freedom of Information Act to obtain all its inspection reports for rehab hospitals. In contrast, Care Compare publishes all nursing home inspection reports and assigns each facility a star rating for its adherence to health and safety rules.

So people now choosing a rehab hospital would not know that at the Encompass hospital in Sioux Falls, South Dakota, in 2021, a nurse accidentally gave Roufs a blood pressure drug called hydralazine instead of hydroxyzine, his prescribed anti-anxiety medication, according to an inspection report. Roufs went into cardiac arrest. This type of error, called a “look-alike/sound-alike,” is one hospitals and staff members are supposed to be especially alert to.

Months before, an internal safety committee had identified a trend of medication errors, including when a nurse accidentally gave a patient 10 times the prescribed amount of insulin, sending him to the hospital, the inspection report said. The nurse had misread four units as 40. Since Roufs’s death, inspectors have faulted the hospital six times for various lapses, most recently in April 2024 for improper wound care.

An Encompass hospital in Texarkana, Texas, misused antipsychotic medications to pacify patients, resulting in an immediate jeopardy finding from CMS, the report said. And the company’s hospital in Erie, Pennsylvania, was issued an immediate jeopardy violation for not keeping track of medication orders in 2023, when a patient had a cardiac arrest after not receiving all of his drugs, according to the inspection report.

The federal government’s overall quality oversight efforts are limited. Medicare docks payment to rehab facilities for patients readmitted to a general hospital during shorter-than-average rehab stays, but unlike at general hospitals, there are no financial penalties when recently discharged rehab patients are hospitalized for critical health issues.

The Biden administration announced last year it intended to develop a rating scale of 1 to 5 stars for rehab facilities. The industry’s trade association, the American Medical Rehabilitation Providers Association, requested a delay in the creation of star ratings until the current quality measures were refined. The Trump administration has not determined whether it will continue the effort to rate rehab facilities, according to a CMS spokesperson.

Deadly bedsores

The family of Paul Webb Jr., 74, claimed in a lawsuit that the Encompass hospital in Erie left Webb unattended in a wheelchair for hours at a time, putting pressure on his tailbone, in 2021.

His medical records, provided to reporters by the family, list a sitting tolerance of one hour.

Webb — who had been originally hospitalized after a brain bleed, a type of stroke — developed skin damage known as a pressure sore, or bedsore, on his bottom, the lawsuit said. The suit said the sore worsened after he was sent to a nursing home, which the family is also suing, then home, and he died later that year. In his final weeks, Webb was unable to stand, sit, or move much because of the injury, the lawsuit said.

In court papers, Encompass and the nursing home denied negligence, as Encompass has in some other pending and closed lawsuits that accused it of failing to prevent pressure sores because nurses and aides failed to regularly reposition patients, or notice and treat emerging sores.

Darby said Webb’s death occurred three months after his Encompass stay and was not related to his care at Encompass. He said no hospital with long-term patients could prevent every new or worsening pressure sore, but that Encompass’ rates were similar to the 1% national average.

One of Webb’s sons, Darel Webb, recalled a warning given to the family as they left an appointment their father had with wound specialists: A doctor brought up Christopher Reeve, the actor who played Superman in movies in the 1970s and 1980s.

“He goes, ‘Remember, Superman was paralyzed from falling off the horse, but he died from a bedsore,’” he said.

Jordan Rau has been writing about hospital safety since 2008. Irena Hwang is a New York Times data reporter who uses computational tools to uncover hidden stories and illuminate the news.

METHODOLOGY

To examine the medical rehabilitation hospital industry, we obtained and analyzed a database of inspection reports of freestanding rehabilitation hospitals from the federal Centers for Medicare & Medicaid Services, or CMS. We also obtained inspection reports from several states through public records requests.

We analyzed inpatient rehabilitation facility characteristics and patient volume data contained in hospital data files from the Rand Corp., a nonprofit research organization. This dataset compiles cost reports all hospitals submit each year to CMS. For each facility for the years 2012 to 2023, we categorized annual discharges by facility type (freestanding rehabilitation hospital or unit within an acute care hospital); facility ownership status (for-profit, nonprofit, or government); and which hospitals were owned by Encompass Health under its current or prior name, HealthSouth.

Financial information about Encompass Health was obtained from the company’s Securities and Exchange Commission disclosure filings.

We examined the readmission rates for all inpatient rehabilitation facilities that CMS publishes in its quality data. CMS evaluates the frequency with which Medicare patients were readmitted for potentially preventable reasons to an acute care hospital during their rehab stay. Separately, CMS also evaluates the frequency of potentially preventable readmissions to an acute care hospital within 30 days of discharge from rehab. We also examined the rate of successful return to home or community. Figures for all three metrics were available for about 1,100 of the roughly 1,200 rehab facilities in the CMS data. The most recent readmission data covered Medicare discharges from October 2021 through September 2023.

We examined nursing home penalties from the last three years from CMS’ data on nursing homes.

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.

Nicole Silva’s 4-year-old daughter was headed to a relative’s house near the southern Colorado town of La Jara when a vehicle T-boned the car she was riding in. A cascade of ambulance rides ensued — a ground ambulance to a local hospital, an air ambulance to Denver, and another ground ambulance to Children’s Hospital Colorado.

Silva’s daughter was on Medicaid, which was supposed to cover the cost of the ambulances. But one of the three ambulance companies, Northglenn Ambulance, a public company since acquired by a private one, sent Silva’s bill to a debt collector. It was for $2,181.60, which grew to more than $3,000 with court fees and interest, court records show. The preschool teacher couldn’t pay, and the collector garnished Silva’s wages.

“It put us so behind on bills — our house payment, electric, phone bills, food for the kids,” said Silva, whose daughter recovered fully from the 2015 crash. “It took away from everything.”

Some state legislators are looking to curb bills like the one she received — surprise bills for ground ambulance rides.

When an ambulance company charges more than an insurer is willing to pay, patients can be left with a big bill they probably had no choice in.

States are trying to fill a gap left by the federal No Surprises Act, which covers air ambulances but not ground services, including ambulances that travel by road and water. This year, Utah and North Dakota joined 18 other states that have passed protections against surprise billing for such rides.

Those protections often include setting a minimum for insurers to pay out if someone they cover needs a ride. But the sticking point is where to set that bar. Legislation in Colorado and Montana stalled this year because policymakers worried that forcing insurers to pay more would lead to higher health coverage costs for everyone.

Surprise ambulance bills are one piece of a health care system that systematically saddles Americans with medical debt, straining their finances, preventing them from accessing care, and increasing racial disparities, as KFF Health News has reported.

“If people are hesitating to call the ambulance because they’re worried about putting a huge financial burden on their family, it means we’re going to get stroke victims who don’t get to the hospital on time,” said Patricia Kelmar, who directs health care campaigns at PIRG, a national consumer advocacy group. “It means that person who’s worried it might be a heart attack won’t call.”

The No Surprises Act, signed into law by President Donald Trump in 2020, says that for most emergency services, patients can be billed for out-of-network care only for the same amount they would have been billed if it were in-network. Like doctors or hospitals, ambulance companies can contract with insurers, making them in-network. Those that don’t remain out-of-network.

But unlike when making an appointment with a doctor or planning a surgery, a patient generally can’t choose the ambulance company that will respond to their 911 call. This means they can get hit with large out-of-network bills.

Federal lawmakers punted on including ground ambulances, in part because of the variety of business models — from private companies to volunteer fire departments — and a lack of data on how much rides cost.

Instead, Congress created an advisory committee that issued recommendations last year. Its overarching conclusion — that patients shouldn’t be stuck in the crossfire between providers and payers — was not controversial or partisan. In Colorado, a measure aimed at expanding protections from surprise ambulance bills got a unanimous thumbs-up in both legislative chambers.

Colorado had previously passed a law protecting people from surprise bills from private ambulance companies. This new measure was aimed at providing similar protections against bills from public ambulance services and for transfers between hospitals.

“We knew it had bipartisan support, but there are some people that vote no on everything,” said a pleasantly surprised Karen McCormick, a Democratic state representative.

A less pleasant surprise came later, when Gov. Jared Polis, who is also a Democrat, vetoed it, citing the fear of rising premiums.

States can do only so much on this issue, because state laws apply only to state-regulated health plans. That leaves out a lot of workers. According to a 2024 national survey by KFF, a health information nonprofit that includes KFF Health News, 63% of people who work for private employers and get health insurance through their jobs have self-funded plans, which aren’t state-regulated.

“It’s why we need a federal ambulance protection law, even if we passed 50 state laws,” Kelmar said.

According to data from the Colorado secretary of state’s office, the only lobbying groups registered as “opposing” the bill were Anthem and UnitedHealth Group, plus UnitedHealth subsidiaries Optum and UnitedHealthcare.

As soon as the legislative session ended in May, Kevin McFatridge, executive director of the Colorado Association of Health Plans, a trade group representing health insurance companies in the state, sent a letter to the governor requesting a veto, with an estimate that the legislation would result in premiums rising 0.4%.

The Colorado bill said local governments — such as cities, counties, or special districts — would set rates.

“We are in a much better place by not having local entities set their own rates,” McFatridge told KFF Health News. “That’s almost like the fox managing the henhouse.”

Jack Hoadley, an emeritus research professor with Georgetown University’s McCourt School of Public Policy, said it isn’t clear whether state laws approved elsewhere are raising premiums, or if so by how much. Hoadley said Washington state is expected to come out with an impact analysis of its law in a couple of years.

The national trade association for insurance companies declined to provide a comment for this article. Instead, AHIP forwarded letters that its leaders submitted to lawmakers in Ohio, West Virginia, and North Dakota this year opposing measures in each state to set base ambulance rates. AHIP leadership described the proposals as inflated, government-mandated pricing that would reduce insurers’ chance to negotiate fair prices. Ultimately, the association warned, the proposed minimums would increase health care costs.

In Montana, legislators were considering a minimum reimbursement for ground ambulances of 400% of what Medicare pays, or at a set local rate if one exists. The proposal was sponsored by two Republicans and backed by ambulance companies. Health insurers successfully lobbied against it, arguing that the price was too steep.

Sarah Clerget, a lobbyist representing AHIP, told Montana lawmakers in a legislative hearing that it’s already hard to get ambulance companies to go in-network with insurers, “because folks are going to need ambulance care regardless of whether their insurance company will cover it.” She said the state’s proposal would leave those paying for health coverage with the burden of the new price.

“None of us like our insurance rates to move,” Republican state Sen. Mark Noland said during a legislative meeting as a committee tabled the bill. He equated the proposed minimum to a mandate that could lead to people having to pay more for health coverage for an important but nonetheless niche service.

Colorado’s governor was similarly focused on premiums. Polis said in his veto letter that the legislation would have raised premiums between 73 cents and $2.15 per member per month.

“I agree that filling this gap in enforcement is crucial to saving people money on health care,” he wrote. “However, those cost savings are outweighed in my view by the premium increases.”

Isabel Cruz, policy director at the Colorado Consumer Health Initiative, which supported the bill, said that even if premiums did rise, Coloradans might be OK with the change. After all, she said, they’d be trading the threat of a big ambulance bill for the price of half a cup of coffee per month.

©2025 KFF Health News. Distributed by Tribune Content Agency, LLC.

LOS ANGELES — Inside a bright new building in the heart of Skid Row, homeless people hung out in a canopy-covered courtyard — some waiting to take a shower, do laundry, or get medication for addiction treatment. Others relaxed on shaded grass and charged their phones as an intake line for housing grew more crowded.

The Skid Row Care Campus officially opened this spring with ample offerings for people living on the streets of this historically downtrodden neighborhood. Pop-up fruit stands and tent encampments lined the sidewalks, as well as dealers peddling meth and fentanyl in open-air drug markets. Some people, sick or strung out, were passed out on sidewalks as pedestrians strolled by on a recent afternoon.

For those working toward sobriety, clinicians are on site to offer mental health and addiction treatment. Skid Row’s first methadone clinic is set to open here this year. For those not ready to quit drugs or alcohol, the campus provides clean syringes to more safely shoot up, glass pipes for smoking drugs, naloxone to prevent overdoses, and drug test strips to detect fentanyl contamination, among other supplies.

As many Americans have grown increasingly intolerant of street homelessness, cities and states have returned to tough-on-crime approaches that penalize people for living outside and for substance use disorders. But the Skid Row facility shows Los Angeles County leaders’ embrace of the principle of harm reduction, a range of more lenient strategies that can include helping people more safely use drugs, as they contend with a homeless population estimated around 75,000 — among the largest of any county in the nation. Evidence shows the approach can help individuals enter treatment, gain sobriety, and end their homelessness, while addiction experts and county health officials note it has the added benefit of improving public health.

“We get a really bad rap for this, but this is the safest way to use drugs,” said Darren Willett, director of the Center for Harm Reduction on the new Skid Row Care Campus. “It’s an overdose prevention strategy, and it prevents the spread of infectious disease.”

Despite a decline in overdose deaths, drug and alcohol use continues to be the leading cause of death among homeless people in the county. Living on the streets or in sordid encampments, homeless people saddle the health care system with high costs from uncompensated care, emergency room trips, inpatient hospitalizations, and, for many of them, their deaths. Harm reduction, its advocates say, allows homeless people the opportunity to obtain jobs, taxpayer-subsidized housing, health care, and other social services without being forced to give up drugs. Yet it’s hotly debated.

Politicians around the country, including Gov. Gavin Newsom in California, are reluctant to adopt harm reduction techniques, such as needle exchanges or supervised places to use drugs, in part because they can be seen by the public as condoning illicit behavior. Although Democrats are more supportive than Republicans, a national poll this year found lukewarm support across the political spectrum for such interventions.

Los Angeles is defying President Donald Trump’s agenda as he advocates for forced mental health and addiction treatment for homeless people — and locking up those who refuse. The city has also been the scene of large protests against Trump’s immigration crackdown, which the president has fought by deploying National Guard troops and Marines.

Trump’s most detailed remarks on homelessness and substance use disorder came during his campaign, when he attacked people who use drugs as criminals and said that homeless people “have no right to turn every park and sidewalk into a place for them to squat and do drugs.” Health and Human Services Secretary Robert F. Kennedy Jr. reinforced Trump’s focus on treatment.

“Secretary Kennedy stands with President Trump in prioritizing recovery-focused solutions to address addiction and homelessness,” said agency spokesperson Vianca Rodriguez Feliciano. “HHS remains focused on helping individuals recover, communities heal, and help make our cities clean, safe, and healthy once again.”

A comprehensive report led by Margot Kushel, a professor of medicine at the University of California-San Francisco, this year found that nearly half of California’s homeless population had a complex behavioral health need, defined as regular drug use, heavy drinking, hallucinations, or a recent psychiatric hospitalization.

The chaos of living outside, she said — marked by violence, sexual assault, sleeplessness, and lack of housing and health care — can make it nearly impossible to get sober.

Skid Row Care Campus

The new care campus is funded by about $26 million a year in local, state, and federal homelessness and health care money, and initial construction was completed by a Skid Row landlord, Matt Lee, who made site improvements on his own, according to Anna Gorman, chief operating officer for community programs at the Los Angeles County Department of Health Services. Operators say the campus should be able to withstand potential federal spending cuts because it is funded through a variety of sources.

Glass front doors lead to an atrium inside the yellow-and-orange complex. It was designed with input from homeless people, who advised the county not just on the layout but also on the services offered on-site. There are 22 recovery beds and 48 additional beds for mostly older homeless people, arts and wellness programs, a food pantry, and pet care. Even bunnies and snakes are allowed.

John Wright, 65, who goes by the nickname Slim, mingled with homeless visitors one afternoon in May, asking them what they needed to be safe and comfortable.

“Everyone thinks we’re criminals, like we’re out robbing everyone, but we aren’t,” said Wright, who is employed as a harm reduction specialist on the campus and is trying, at his own pace, to stop using fentanyl. “I’m homeless and I’m a drug addict, but I’m on methadone now so I’m working on it,” he said.

Nearby on Skid Row, Anthony Willis rested in his wheelchair while taking a toke from a crack pipe. He’d just learned about the new care campus, he said, explaining that he was homeless for roughly 20 years before getting into a taxpayer-subsidized apartment on Skid Row. He spends most of his days and nights on the streets, using drugs and alcohol.

The drugs, he said, help him stay awake so he can provide companionship and sometimes physical protection for homeless friends who don’t have housing. “It’s tough sometimes living down here; it’s pretty much why I keep relapsing,” said Willis, who at age 62 has asthma and arthritic knees. “But it’s also my community.”

Willis said the care campus could be a place to help him kick drugs, but he wasn’t sure he was ready.

Research shows harm reduction helps prevent death and can build long-term recovery for people who use substances, said Brian Hurley, an addiction psychiatrist and the medical director for the Bureau of Substance Abuse Prevention and Control at the Los Angeles County Department of Public Health. The techniques allow health care providers and social service workers to meet people when they’re ready to stop using drugs or enter treatment.

“Recovery is a learning activity, and the reality is relapse is part of recovery,” he said. “People go back and forth and sometimes get triggered or haven’t figured out how to cope with a stressor.”

Swaying Public Opinion

Under harm reduction principles, officials acknowledge that people will use drugs. Funded by taxpayers, the government provides services to use safely, rather than forcing people to quit or requiring abstinence in exchange for government-subsidized housing and treatment programs.

Los Angeles County is spending hundreds of millions to combat homelessness, while also launching a multiyear “By LA for LA” campaign to build public support, fight stigma, and encourage people to use services and seek treatment. Officials have hired a nonprofit, Vital Strategies, to conduct the campaign including social media advertising and billboards to promote the expansion of both treatment and harm reduction services for people who use drugs.

The organization led a national harm reduction campaign and is working on overdose prevention and public health campaigns in seven states using roughly $70 million donated by Michael Bloomberg, the former mayor of New York.

“We don’t believe people should die just because they use drugs, so we’re going to provide support any way that we can,” said Shoshanna Scholar, director of harm reduction at the Los Angeles County Department of Health Services. “Eventually, some people may come in for treatment but what we really want is to prevent overdose and save lives.”

Los Angeles also finds itself at odds with California’s Democratic governor. Newsom has spearheaded stricter laws targeting homelessness and addiction and has backed treatment requirements for people with mental illness or who use drugs. Last year, California voters approved Proposition 36, which allows felony charges for some drug crimes, requires courts to warn people they could be charged with murder for selling or providing illegal drugs that kill someone, and makes it easier to order treatment for people who use drugs.

Even San Francisco approved a measure last year that requires welfare recipients to participate in treatment to continue receiving cash aid. Mayor Daniel Lurie recently ordered city officials to stop handing out free drug supplies, including pipes and foil, and instead to require participation in drug treatment to receive services. Lurie signed a recovery-first ordinance, which prioritizes “long-term remission” from substance use, and the city is also expanding policing while funding new sober-living sites and treatment centers for people recovering from addiction.

‘Harm Encouragement’

State Sen. Roger Niello, a Republican who represents conservative suburbs outside Sacramento, says the state needs to improve the lives of homeless people through stricter drug policies. He argues that providing drug supplies or offering housing without a mandate to enter treatment enables homeless people to remain on the streets.

Proposition 36, he said, needs to be implemented forcefully, and homeless people should be required to enter treatment in exchange for housing.

“I think of it as tough love,” Niello said. “What Los Angeles is doing, I would call it harm encouragement. They’re encouraging harm by continuing to feed a habit that is, quite frankly, killing people.”

Keith Humphreys, who worked in the George W. Bush and Barack Obama administrations and pioneered harm reduction practices across the nation, said that communities should find a balance between leniency and law enforcement.

“Parents need to be able to walk their kids to the park without being traumatized. You should be able to own a business without being robbed,” he said. “Harm reduction and treatment both have a place, and we also need prevention and a focus on public safety.”

Just outside the Skid Row Care Campus, Cindy Ashley organized her belongings in a cart after recently leaving a local hospital ER for a deep skin infection on her hand and arm caused by shooting heroin. She also regularly smokes crack, she said.

She was frantically searching for a home so she could heal from two surgeries for the infection. She learned about the new care campus and rushed over to get her name on the waiting list for housing.

“I’m not going to make it out here,” she said, in tears.

©2025 KFF Health News. Distributed by Tribune Content Agency, LLC.

In Connecticut, construction workers in the Local 478 union who complete addiction treatment are connected with a recovery coach who checks in daily, attends recovery meetings with them, and helps them navigate the return to work for a year.

In Pennsylvania, doctors applying for credentials at Geisinger hospitals are not required to answer intrusive questions about mental health care they’ve received, reducing the stigma around clinicians seeking treatment.

The workplace is the new ground zero for addressing mental health. That means companies — employees and supervisors alike — must confront crises, from addiction to suicide. The two seemingly unrelated advances in Connecticut and Pennsylvania have one common factor: They grew out of the work of a little known federal agency called the National Institute for Occupational Safety and Health.

It’s one of the key federal agencies leading workplace mental health efforts, from decreasing alarmingly high rates of suicide among construction workers to addressing burnout and depression among health care workers.

But after gaining considerable traction during the COVID-19 pandemic, that work is now imperiled. The Trump administration has fired a majority of NIOSH staffers and is proposing severe reductions to its budget.

Private industry and nonprofits may be able to fill some of the gap, but they can’t match the federal government’s resources. And some companies may not prioritize worker well-being above profits.

About 60% of employees worldwide say their job is the chief factor affecting their mental health. Research suggests workplace stress causes about 120,000 deaths and accounts for up to 8% of health costs in the U.S. each year.

“Workplace mental health is one of the most underappreciated yet critical areas we could intervene on,” said Thomas Cunningham, a former senior behavioral scientist at NIOSH who took a buyout this year. “We were just starting to get some strong support from all the players involved,” he said. “This administration has blown that apart.”

NIOSH, established in 1970 by the same law that created the better-known Occupational Safety and Health Administration, is charged with producing research that informs workplace safety regulations. It’s best known for monitoring black lung disease in coal miners and for testing masks, like the N95s used during the pandemic.

As part of the mass firing of federal workers this spring, NIOSH was slated to lose upward of 900 employees. After pushback from legislators — primarily over coal miner and first responder safety — the administration reinstated 328. It’s not clear if any rehired workers focus on mental health initiatives.

At least two lawsuits challenging the firings are winding through the courts. Meanwhile, hundreds of NIOSH employees remain on administrative leave, unable to work.

Emily Hilliard, a press secretary for the Department of Health and Human Services, asserted in a statement that “the nation’s critical public health functions remain intact and effective,” including support for coal miners and firefighters through NIOSH. “Improving the mental health of American workers remains a key priority for HHS, and that work is ongoing,” she wrote.

She did not answer specific questions from KFF Health News about whether any reinstated NIOSH employees lead mental health efforts or who is continuing such work.

Reducing Suicides and Addiction in Construction and Mining

Over 5,000 construction workers die by suicide annually — five times the number who die from work-related injuries. Miners suffer high rates too. And nearly a fifth of workers in both industries have a substance use disorder, double the rate among all U.S. workers.

Kyle Zimmer recognized these issues as early as 2010. That’s when he started a members’ assistance program for the International Union of Operating Engineers Local 478 in Connecticut. He hired a licensed clinician on retainer and developed partnerships with local treatment facilities.

At first, workers pushed back, said Zimmer, who recently retired after 25 years in the union, many as director of health and safety.

Their perception was, “If I speak up about this issue, I’m going to be blackballed from the industry,” he said.

General contractors and project owners are increasingly incorporating mental health services on-site and as a normal part of their project budgets, says TJ Lyons, a multidecade construction industry safety professional. But slowly, that changed — with NIOSH’s help, Zimmer said.

The agency developed an approach to worker safety called Total Worker Health, which identifies physical and mental health as critical to occupational safety. It also shifts the focus from how individuals can keep themselves safe to how policies and environments can be changed to keep them safe.

Over decades, the concept spread from research journals and universities to industry conferences, unions, and eventually workers, Zimmer said. People began accepting that mental health was an occupational safety issue, he said. That paved the way for NIOSH’s Miner Health Program to develop resources on addiction and for Zimmer to establish the recovery coaching program in Connecticut.

“We have beat that stigma down by a lot,” Zimmer said.

Other countries have made more progress on mental health at work, said Sally Spencer-Thomas, co-chair of the International Association for Suicide Prevention’s workplace special interest group. But with the growth of the Total Worker Health approach, a 2022 surgeon general report on the topic, and increasing research, the U.S. appeared to finally be catching up. The recent cuts to NIOSH suggest “we’re kind of losing our footing,” she said.

Last year, Natalie Schwatka, an assistant professor at the Colorado School of Public Health’s Center for Health, Work & Environment, received a five-year NIOSH grant to build a toolkit to help leaders in labor-intensive industries, such as construction and mining, strengthen worker safety and mental health.

While many companies connect people to treatment, few focus on preventing mental illness, Schwatka said. NIOSH funding “allows us to do innovative things that maybe industry wouldn’t necessarily start.”

Her team planned to test the toolkit with eight construction companies in the coming years. But with few NIOSH employees left to process annual renewals, the funds could stop flowing anytime.

The consequence of losing such research is not confined to academia, Zimmer said. “Workers’ health and safety is very much in jeopardy.”

Health Care Sector Braces for Fallout From NIOSH Cuts

For a long time, clinicians have had troubling rates of addiction and suicide risk. Just after the height of the pandemic, a NIOSH survey found nearly half of health workers reported feeling burned out and nearly half intended to look for a new job. The agency declared a mental health crisis in that workforce.

NIOSH received $20 million through the American Rescue Plan Act to create a national campaign to improve the mental health of health workers.

The results included a step-by-step guide for hospital leaders to improve systems to support their employees, as well as tips and suggested language for leaders to discuss well-being and for workers to advocate for better policies.

Cunningham, the behavioral scientist who left NIOSH this year, helped lead the effort. He said the goal was to move beyond asking health workers to be resilient or develop meditation skills.

“We’re not saying resilience is bad, but we’re trying to emphasize that’s not the first thing we need to focus on,” he said.

Instead, NIOSH suggested eliminating intrusive questions about mental health that weren’t relevant to keeping patients safe from hospital credentialing forms and offering workers more input on how their schedules are made.

The agency partnered on this work with the Dr. Lorna Breen Heroes’ Foundation, named after an emergency medicine doctor who died by suicide during the pandemic. The foundation extended the campaign by helping health systems in four states implement pieces of the guide and learn from one another.

Foundation leaders recently appeared on Capitol Hill with Noah Wyle, who plays an emergency physician on the TV series “The Pitt,” to advocate for renewed federal funding for this work.

Corey Feist, foundation CEO and co-founder, said renewing that funding to NIOSH is crucial to get this guide out to all hospitals.

Without those resources, “it’s just going to really delay this transformation of health care that needs to happen,” he said.

Who Can Fill the Gap?

TJ Lyons, a multidecade construction industry safety professional who has worked at big-name companies such as Gilbane, Turner, and DPR Construction, is confident that workplace mental health will remain a priority despite the NIOSH cuts.

General contractors and project owners have been incorporating budget lines for mental health support for years, he said, sharing an example of a $1 billion project that included a mental health clinician on call for four hours several days a week. Workers would make appointments to sit in their pickup trucks during lunch breaks and talk to her, he said.

Now when these big companies subcontract with smaller firms, they often ask if the subcontractors provide mental health support for workers, Lyons said.

But others are skeptical that industry can replace NIOSH efforts.

Several workplace safety experts said smaller companies lack the means to commission research studies and larger companies may not share the results publicly, as a federal agency would. Nor would they have the same credibility.

“Private industry is going to provide what the people paying them want to provide,” said a NIOSH employee and member of the American Federation of Government Employees union, currently on administrative leave, who was granted anonymity for fear of professional retaliation.

Without federal attention on workplace mental health, “people may leave the workforce,” she said. “Workers may die.”

©2025 KFF Health News. Distributed by Tribune Content Agency, LLC.

By Rachana Pradhan and Arthur Allen | KFF Health News

The Trump administration’s broadsides against scientific research have caused unprecedented upheaval at the National Cancer Institute, the storied federal government research hub that has spearheaded advances against the disease for decades.

NCI, which has long benefited from enthusiastic bipartisan support, now faces an exodus of clinicians, scientists, and other staffers — some fired, others leaving in exasperation.

After years of accelerating progress that has reduced cancer deaths by a third since the 1990s, the institute has terminated funds nationwide for research to fight the disease, expand care, and train new oncologists. “We use the word ‘drone attack’ now regularly,” one worker said of grant terminations. “It just happens from above.”

The assault could well result in a perceptible slowing of progress in the fight against cancer.

Nearly 2 million Americans are diagnosed with malignancies every year. In 2023, cancer killed more than 613,000 people, making it the second-leading cause of death after heart disease. But the cancer fight has also made enormous progress. Cancer mortality in the U.S. has fallen by 34% since 1991, according to the American Cancer Society. There are roughly 18 million cancer survivors in the country.

That trend “we can very, very closely tie to the enhanced investment in cancer science by the U.S. government,” said Karen Knudsen, CEO of the Parker Institute for Cancer Immunotherapy and a globally recognized expert on prostate cancer.

“We’re winning,” Knudsen said. “Why we would let up, I really don’t understand.”

This article is based on interviews with nearly two dozen current and former NCI employees, academic researchers, scientists, and patients. KFF Health News agreed not to name some government workers because they are not authorized to speak to the news media and fear retaliation.

“It’s horrible. It’s a crap show. It really, really is,” said an NCI laboratory chief who has worked at the institute for three decades. He’s lost six of the 30 people in his lab this year: four scientists, a secretary, and an administrator.

“If we survive I will be somewhat surprised,” he said.

After a mandate by the Department of Health and Human Services and the Department of Government Efficiency to slash contract spending by more than a third, the cancer institute is cutting contracts to maintain precious biological specimens used in its research, according to three scientists. “The required contract cuts are going to be devastating,” a senior scientist said.

On the NCI campus in Bethesda, Maryland, scientists describe delays in getting essential supplies — “literally anything that goes into a test tube or a petri dish,” a recently departed clinician said — because of staffing cuts and constant changes in policies about what they can order.

Even the websites that publish new evidence on cancer treatment and diagnosis aren’t being updated, because HHS fired workers who managed them. And when NCI scientists do communicate with outsiders, what they say has been severely restricted, according to documents viewed by KFF Health News. Forbidden topics include mass firings, President Donald Trump’s executive orders, and “DEIA” – diversity, equity, inclusion, and accessibility.

The turmoil at the National Institutes of Health’s largest arm could haunt the country and the world for years to come.

“I really, really don’t understand what they’re trying to achieve,” said Sarah Kobrin, chief of NCI’s health systems and interventions research branch. “It just doesn’t make sense.”

“Efforts that are lifesaving now are being curtailed,” one scientist said. “People will die.”

Years of bipartisan support

Initially, some workers said, they thought the cancer institute might be spared. HHS Secretary Robert F. Kennedy Jr. has called chronic disease — cancer is one — “an existential threat” to the country. Cancer research, with multiple NCI-funded breakthroughs in genetics and immunotherapy, has sidestepped the political minefields around other public health issues, like vaccination.

“People who care about cancer might be the biggest lobby in the country,” said Paul Goldberg, editor and publisher of The Cancer Letter, which has monitored oncology science and policy since 1973.

Count Mike Etchamendy, 69, of Big Bear Lake, as part of that lobby. Since 2013 he’s flown to the East Coast scores of times to participate in five clinical trials at the cancer wing of NIH’s Clinical Center.

“They call it the House of Hope,” Etchamendy said. Between drugs, therapeutic vaccines, and expert treatment for his rare bone cancer, called chordoma, he said, he believes he’s gained at least 10 years of life. He’s proud to have served as a “lab rat for science” and worries about NCI’s future.

“People come from all over the world to learn there,” Etchamendy said. “You cut funding there, you’re going to cut major research on cancer.”

In response to a list of detailed questions from KFF Health News about the cuts and chaos at NCI, HHS spokesperson Andrew Nixon said the reporting amounted to a “biased narrative” that “misrepresents a necessary transformation at the National Cancer Institute.” Nixon declined to elaborate but said research into cancer and other health conditions continues to be a high priority “for both NIH and HHS.”

“We are refocusing resources on high-impact, evidence-based research — free from ideological bias or institutional complacency. While change can be uncomfortable for those invested in the status quo, it is essential to ensure that NCI delivers on its core mission,” he said.

Much of NCI’s work is authorized by the National Cancer Act of 1971, which expanded its mandate as part of President Richard Nixon’s “War on Cancer.” Three of four of the cancer institute’s research dollars go to outside scientists, with most of the remainder funding more than 300 scientists on campus.

And Congress was generous. Harold Varmus, one of more than 40 Nobel laureates whose work was funded by NCI, said budgets were usually handsome when he was NIH director from 1993 through 1999. President Bill Clinton “would say to me, ‘I’d like to give you a bigger increase, Harold, but your friends in Congress will bring it up.’ He’d offer me a 5% increase,” Varmus recalled, but “I’d end up getting more like 10%” from Congress.

Congress appropriated $2 billion to NCI in fiscal 1993. By 2025, funding had risen to $7.22 billion.

Rat on your colleagues

During a May 19 town hall meeting with NIH staff members, Jay Bhattacharya, the institute’s new director, equivocated when asked about funding cuts for research into improving the health of racial and ethnic minorities — cuts made under the guise of purging DEI from the government.

According to a recording of the meeting obtained by KFF Health News, Bhattacharya said the agency remained “absolutely committed to advancing the health and well-being of every population, including minority populations, LGBTQ populations, and every population.”

Research addressing the health needs of women and minorities is “an absolute priority of mine,” he said. “We’re going to keep funding that.” But a study considering whether “structural racism causes poor health in minority populations” is “not a scientific hypothesis.”

“We need scientific ideas that are actionable, that improve the health and well-being of people, not ideological ideas that don’t have any chance of improving the health and well-being of people,” he said. That comment angered many staffers, several said in interviews. Many got up and walked out during the speech, while others, watching remotely, scoffed or jeered.

Several current and former NCI scientists questioned Bhattacharya’s commitment to young scientists and minorities. Staffing cuts early in the year eliminated many recently hired NCI scientists. At least 172 National Cancer Institute grants, including for research aimed at minimizing health disparities among racial minorities or LGBTQ+ people, were terminated and hadn’t been reinstated as of June 16, according to a KFF Health News analysis of HHS documents and a list of grant terminations by outside researchers.

Those populations have higher rates of certain cancer diagnoses and are more likely to receive diagnoses later than white or heterosexual people. Black people are also more likely to die of many cancer types than all other racial and ethnic groups.

Jennifer Guida, a researcher who focuses on accelerated aging in cancer survivors, said she recently left NCI after a decade in part because of the administration’s DEI orders. According to several workers and internal emails viewed by KFF Health News, those included an HHS edict in January to report their colleagues who worked on such issues, and flagging grants that included DEI-related terms because they didn’t align with Trump’s priorities.

‘I’m not going to put my name attached to that. I don’t stand for that. It’s not OK,” said Guida, who added that it amounted to a “scrubbing of science.”

Racial discrimination is one factor that contributes to accelerated aging. “There are a growing number of cancer survivors in the U.S.,” Guida said, and “a significant number of those people who will become cancer survivors are racial and ethnic minorities.”

“Those people deserve to be studied,” she said. “How can you help those people if you’re not even studying them?”

In May, NCI informed leaders of the Comprehensive Partnerships to Advance Cancer Health Equity, a program that links 14 large U.S. cancer centers with minority-serving colleges and universities, that their funding would be cut. The project’s Notice of Funding Opportunity — the mechanism the government uses to award grants — had been suddenly taken offline, meaning NCI staffers couldn’t award future funding, according to three sources and internal communications viewed by KFF Health News. These “unpublishings” have often occurred without warning, explanation, or even notification of the grantee that no more money would be coming.

The cancer partnerships have trained more than 8,500 scientists. They’re designed to address widely documented disparities in cancer care by having top medical schools place students from rural, poor, and minority-serving schools and community clinics in research, training, and outreach.

Research shows that patients from racial and ethnic minorities receive better medical care and have improved outcomes when their clinicians share their background.

“I’m from an immigrant family, the first to graduate in my family,” said Elena Martinez, a professor of family medicine and public health at the University of California-San Diego, who leads one of the partnerships with colleagues at largely Hispanic San Diego State University. “I wouldn’t be here without this kind of program, and there won’t be people like me here in the future if we cut these programs.” *

Silencing the science communicators

In early April, when the dust settled after mass firings across HHS, workers in NCI’s communications office were relieved they still had their jobs.

It didn’t last. A month later, HHS fired nearly all of them, three former workers said. Combined with retirements and other departures, a skeleton crew of six or seven remain of about 75 people. “We were all completely blindsided,” a fired worker said. NCI leadership “had no idea that this was happening.”

As a result, websites, newsletters, and other resources for patients and doctors about the latest evidence in cancer treatment aren’t being updated. They include Cancer.gov and NCI’s widely used Physician Data Query, which compile research findings that doctors turn to when caring for cancer patients.

Gary Kreps, founding director of the Center for Health and Risk Communication at George Mason University, said he relied on Physician Data Query when his father was diagnosed with advanced stomach cancer, taking PDQ printouts when he met with his dad’s doctors. “It made a huge difference,” Kreps said. “He ended up living, like, another three years” — longer than expected — “and enjoyed the rest of his life.”

As of May 30, banners at the top of the Cancer.gov and PDQ websites said, “Due to HHS restructuring and reduction in workforce efforts, the information on this website may not be up to date and pages will indicate as such.” The banners are gone, but neither website was being updated, according to a fired worker with knowledge of the situation.

Outdated PDQ information is “really very dangerous,” Kreps said.

Wiping out NCI’s communications staff makes it harder to share complex and ever-changing information that doctors and patients need, said Peter Garrett, who headed NCI’s communications before retiring in May. Garrett said he left because of concerns about political interference.

“The science isn’t finished until it’s communicated,” he said. “Without the government playing that role, who’s going to step in?”

A budget to ‘destroy clinical research’

Following court decisions that blocked some NIH grant cancellations or rendered them “void” and “illegal,” NIH official Michelle Bulls in late June told staffers to stop terminating grants. However, NCI workers told KFF Health News they continue to review grants flagged by NIH to assess whether they align with Trump administration priorities. Courts have ordered NIH to reinstate some terminated grants, but not all of them.

At NCI and across NIH, staffers remain anxious.

The White House wants Congress to slash the cancer institute’s budget by nearly 40%, to $4.53 billion, as part of a larger proposal to sharply reduce NIH’s fiscal 2026 coffers.

Usually the president’s budget is dead on arrival in Congress, and members of both parties have expressed doubt about Trump’s 2026 proposal. But agency workers, outside scientists, and patients fear this one may stick, with devastating impact.

It would force NCI to suspend all new grants or cut existing grants so severely that the gaps will close many labs, said Varmus, who ran NCI from 2010 to 2015. Add that to the impact on NCI’s contracts, clinical trials, internal research, and salaries, he said, and “you can reliably say that NCI will be unable to keep up in any way with the promise of science that’s currently underway.”

The NCI laboratory chief, who has worked at the institute for decades, put it this way: “If the 40% budget cut passes in Congress, it will destroy clinical research at NCI.”

Correction: This article was updated July 14, 2025, to reflect that Elena Martinez leads a cancer partnership at San Diego State University

KFF Health News correspondent Rae Ellen Bichell contributed to this report.

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

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As summer ushers in peak mosquito season, health and vector control officials are bracing for the possibility of another year of historic rates of dengue. And with climate change, the lack of an effective vaccine, and federal research cuts, they worry the disease will become endemic to a larger swath of North America.

About 3,700 new dengue infections were reported last year in the contiguous United States, up from about 2,050 in 2023, according to the Centers for Disease Control and Prevention. All of last year’s cases were acquired abroad, except for 105 cases contracted in California, Florida, or Texas. The CDC issued a health alert in March warning of the ongoing risk of dengue infection.

“I think dengue is here with us to stay,” said infectious disease specialist Michael Ben-Aderet, associate medical director of hospital epidemiology at Cedars-Sinai in Los Angeles, about dengue becoming a new normal in the U.S. “These mosquitoes aren’t going anywhere.”

Dengue is endemic — a label health officials assign when diseases appear consistently in a region — in many warmer parts of the world, including Latin America, India, and Southeast Asia. Dengue cases increased markedly last year in many of those places, especially in Central and South America.

The disease, which can spread when people are bitten by infected Aedes mosquitoes, was not common in the contiguous United States for much of the last century. Today, most locally acquired (meaning unrelated to travel) dengue cases in the U.S. happen in Puerto Rico, which saw a sharp increase in 2024, triggering a local public health emergency.

Most people who contract dengue don’t get sick. But in some people symptoms are severe: bleeding from the nose or mouth, intense stomach pain, vomiting, and swelling. Occasionally, dengue causes death.

California offers a case study in how dengue is spreading in the U.S. The Aedes aegypti and Aedes albopictus mosquitoes that transmit dengue weren’t known to be in the state 25 years ago. They are now found in 25 counties and more than 400 cities and unincorporated communities, mostly in Southern California and the Central Valley.

The spread of the mosquitoes is concerning because their presence increases the likelihood of disease transmission, said Steve Abshier, president of the Mosquito and Vector Control Association of California.

From 2016 through 2022, there were an average of 136 new dengue cases a year in California, each case most likely brought to the state by someone who had traveled and been infected elsewhere. In 2023, there were about 250 new cases, including two acquired locally.

In 2024, California saw 725 new dengue cases, including 18 acquired locally, state data shows.

Climate change could contribute to growth in the Aedes mosquitoes’ population, Ben-Aderet said. These mosquitoes survive best in warm urban areas, often biting during the daytime. Locally acquired infections often occur when someone catches dengue during travel, then comes home and is bitten by an Aedes mosquito that bites and infects another person.

“They’ve just been spreading like wildfire throughout California,” Ben-Aderet said.

Dengue presents a challenge to the many primary care doctors who have never seen it. Ben-Aderet said doctors who suspect dengue should obtain a detailed travel history from their patients, but confirming the diagnosis is not always quick.

“There’s no easy test for it,” he said. “The only test that we have for dengue is antibody tests.” He added that “most labs probably aren’t doing it commercially, so it’s usually like a send-out test from most labs. So you really have to suspect someone has dengue.”

Best practices for avoiding dengue include eliminating any standing pools of water on a property — even small pools — and using mosquito repellent, Abshier said. Limiting activity at dusk and dawn, when mosquitoes bite most often, can also help.

Efforts to combat dengue in California became even more complicated this year after wildfires ripped through Los Angeles. The fires occurred in a hot spot for mosquito-borne illnesses. San Gabriel Valley Mosquito and Vector Control District officials have worked for months to treat more than 1,400 unmaintained swimming pools left in the wake of fire, removing potential breeding grounds for mosquitoes.

San Gabriel vector control officials have used local and state resources to treat the pools, said district spokesperson Anais Medina Diaz. They have applied for reimbursement from the Federal Emergency Management Agency, which has not historically paid for vector control efforts following wildfires.

In California, vector control agencies are often primarily funded by local taxes and fees on property owners.

Some officials are pursuing the novel method of releasing sterilized Aedes mosquitoes to reduce the problem. That may prove effective, but deploying the method in a large number of areas would be costly and would require a massive effort at the state level, Abshier said. Meanwhile, the federal government is pulling back on interventions: Several outlets have reported that the National Institutes of Health will stop funding new climate change-related research, which could include work on dengue.

This year, reported rates of dengue in much of the Americas have declined significantly from 2024. But the trend in the United States likely won’t be clear until later in the year, after the summer mosquito season ends.

Health and vector control researchers aren’t sure how bad it will get in California. Some say there may be limited outbreaks, while others predict dengue could get much worse. Sujan Shresta, a professor and infectious disease researcher at the La Jolla Institute for Immunology, said other places, like Nepal, experienced relatively few cases of dengue in the recent past but now regularly see large outbreaks.

There is a vaccine for children, but it faces discontinuation from a lack of global demand. Two other dengue vaccines are unavailable in the United States. Shresta’s lab is hard at work on an effective, safe vaccine for dengue. She hopes to release results from animal testing in a year or so; if the results are positive, human trials could be possible in about two years.

“If there’s no good vaccine, no good antivirals, this will be a dengue-endemic country,” she said.

Phillip Reese is a data reporting specialist and an associate professor of journalism at California State University-Sacramento.

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

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

©2025 KFF Health News. Distributed by Tribune Content Agency, LLC.

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

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

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

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

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

California’s legislature, seeking to close a projected $12 billion budget deficit, has agreed with a proposal by Gov. Gavin Newsom to end Medi-Cal enrollment in January 2026 for those over 19 without legal status. Lawmakers are in the process of hashing out the final contours of the budget deal before the new fiscal year begins July 1.

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

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

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

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

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

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

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

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

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

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

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

In Sacramento, Democratic lawmakers found themselves in the uncomfortable position of rolling back health benefits for low-income residents with unsatisfactory immigration status, including people without legal status, people who’ve held green cards for under five years, and some others who are in the process of applying for legal status or have statuses meant to protect them from deportation. In addition to supporting the Medi-Cal enrollment freeze for immigrants 19 and older in the country illegally, legislators agreed to charge monthly premiums for all residents with unsatisfactory immigration status between the ages of 19 and 59. Newsom proposed a $100 monthly premium beginning in January 2027; state lawmakers countered with $30 starting in July 2027.

“What I’m hearing on the ground is folks are telling me they’re going to have a really hard time making these premium payments, whether it’s $100 or $30,” said Carlos Alarcon, health and public benefits policy analyst with the California Immigrant Policy Center, an advocacy group. “The reality is most people already have limited budgets.”

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

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

State Sen. Roger Niello, a Republican who serves as vice chair of the Senate budget committee, said he believes California shouldn’t be funding Medi-Cal for people who lack legal status, particularly given the state’s fiscal challenges. He also said he worries that coverage of people in the country illegally could encourage others to move to California.

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

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

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

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

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

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

Correction: This article was revised at on July 1, 2025, to correct the year Medi-Cal coverage was expanded to adults ages 26 to 49 without legal status.

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

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

California lawmakers are poised to delay the state’s much-ballyhooed new law mandating in vitro fertilization insurance coverage for millions, set to take effect July 1. Gov. Gavin Newsom has asked lawmakers to push the implementation date to January 2026, leaving patients, insurers, and employers in limbo.

The law, Senate Bill 729, requires state-regulated health plans offered by large employers to cover infertility diagnosis and treatment, including IVF. Nine million people will qualify for coverage under the law. Advocates have praised the law as “a major win for Californians,” especially in making same-sex couples and aspiring single parents eligible, though cost concerns limited the mandate’s breadth.

People who had been planning fertility care based on the original timeline are now “left in a holding pattern facing more uncertainty, financial strain, and emotional distress,” Alise Powell, a director at Resolve: The National Infertility Association, said in a statement.

During IVF, a patient’s eggs are retrieved, combined with sperm in a lab, and then transferred to a person’s uterus. A single cycle can total around $25,000, out of reach for many. The California law requires insurers to cover up to three egg retrievals and an unlimited number of embryo transfers.

Not everyone’s coverage would be affected by the delay. Even if the law took effect July 1, it wouldn’t require IVF coverage to start until the month an employer’s contract renews with its insurer. Rachel Arrezola, a spokesperson for the California Department of Managed Health Care, said most of the employers subject to the law renew their contracts in January, so their employees would not be affected by a delay.

She declined to provide data on the percentage of eligible contracts that renew in July or later, which would mean those enrollees wouldn’t get IVF coverage until at least a full year from now, in July 2026 or later.

The proposed new implementation date comes amid heightened national attention on fertility coverage. California is now one of 15 states with an IVF mandate, and in February, President Donald Trump signed an executive order seeking policy recommendations to expand IVF access.

It’s the second time Newsom has asked lawmakers to delay the law. When the Democratic governor signed the bill in September, he asked the legislature to consider delaying implementation by six months. The reason, Newsom said then, was to allow time to reconcile differences between the bill and a broader effort by state regulators to include IVF and other fertility services as an essential health benefit, which would require the marketplace and other individual and small-group plans to provide the coverage.

Newsom spokesperson Elana Ross said the state needs more time to provide guidance to insurers on specific services not addressed in the law to ensure adequate and uniform coverage. Arrezola said embryo storage and donor eggs and sperm were examples of services requiring more guidance.

State Sen. Caroline Menjivar, a Democrat who authored the original IVF mandate, acknowledged a delay could frustrate people yearning to expand their families, but requested patience “a little longer so we can roll this out right.”

Sean Tipton, a lobbyist for the American Society for Reproductive Medicine, contended that the few remaining questions on the mandate did not warrant a long delay.

Lawmakers appear poised to advance the delay to a vote by both houses of the legislature, likely before the end of June. If a delay is approved and signed by the governor, the law would immediately be paused. If this does not happen before July 1, Arrezola said, the Department of Managed Health Care would enforce the mandate as it exists. All plans were required to submit compliance filings to the agency by March. Arrezola was unable to explain what would happen to IVF patients whose coverage had already begun if the delay passes after July 1.

The California Association of Health Plans, which opposed the mandate, declined to comment on where implementation efforts stand, although the group agrees that insurers need more guidance, spokesperson Mary Ellen Grant said.

Kaiser Permanente, the state’s largest insurer, has already sent employers information they can provide to their employees about the new benefit, company spokesperson Kathleen Chambers said. She added that eligible members whose plans renew on or after July 1 would have IVF coverage if implementation of the law is not delayed.

Employers and some fertility care providers appear to be grappling over the uncertainty of the law’s start date. Amy Donovan, a lawyer at insurance brokerage and consulting firm Keenan & Associates, said the firm has fielded many questions from employers about the possibility of delay. Reproductive Science Center and Shady Grove Fertility, major clinics serving different areas of California, posted on their websites that the IVF mandate had been delayed until January 2026, which is not yet the case. They did not respond to requests for comment.

Some infertility patients confused over whether and when they will be covered have run out of patience. Ana Rios and her wife, who live in the Central Valley, had been trying to have a baby for six years, dipping into savings for each failed treatment. Although she was “freaking thrilled” to learn about the new law last fall, Rios could not get clarity from her employer or health plan on whether she was eligible for the coverage and when it would go into effect, she said. The couple decided to go to Mexico to pursue cheaper treatment options.

“You think you finally have a helping hand,” Rios said of learning about the law and then, later, the requested delay. “You reach out, and they take it back.”

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

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