Benjamin Han, a geriatrician and addiction medicine specialist at the University of California-San Diego, tells his students a cautionary tale about a 76-year-old patient who, like many older people, struggled with insomnia.

“She had problems falling asleep, and she’d wake up in the middle of the night,” he said. “So her daughter brought her some sleep gummies” — edible cannabis candies.

“She tried a gummy after dinner and waited half an hour,” Han said.

Feeling no effects, she took another gummy, then one more — a total of four over several hours.

Han advises patients who are trying cannabis to “start low; go slow,” beginning with products that contain just 1 or 2.5 milligrams of tetrahydrocannabinol, or THC, the psychoactive ingredient that many cannabis products contain. Each of the four gummies this patient took, however, contained 10 milligrams.

The woman started experiencing intense anxiety and heart palpitations. A young person might have shrugged off such symptoms, but this patient had high blood pressure and atrial fibrillation, a heart arrhythmia. Frightened, she went to an emergency room.

Lab tests and a cardiac work-up determined the woman wasn’t having a heart attack, and the staff sent her home. Her only lingering symptom was embarrassment, Han said. But what if she’d grown dizzy or lightheaded and was hurt in a fall? He said he has had patients injured in falls or while driving after using cannabis. What if the cannabis had interacted with the prescription drugs she took?

“As a geriatrician, it gives me pause,” Han said. “Our brains are more sensitive to psychoactive substances as we age.”

Thirty-nine states and the District of Columbia now allow cannabis use for medical reasons, and in 24 of those states, as well as the district, recreational use is also legal. As older adults’ use climbs, “the benefits are still unclear,” Han said. “But we’re seeing more evidence of potential harms.”

A wave of recent research points to reasons for concern for older users, with cannabis-related emergency room visits and hospitalizations rising, and a Canadian study finding an association between such acute care and subsequent dementia. Older people are more apt than younger ones to try cannabis for therapeutic reasons: to relieve chronic pain, insomnia, or mental health issues, though evidence of its effectiveness in addressing those conditions remains thin, experts said.

In an analysis of national survey data published June 2 in the medical journal JAMA, Han and his colleagues reported that “current” cannabis use (defined as use within the previous month) had jumped among adults age 65 or older to 7% of respondents in 2023, from 4.8% in 2021. In 2005, he pointed out, fewer than 1% of older adults reported using cannabis in the previous year.

What’s driving the increase? Experts cite the steady march of state legalization — use by older people is highest in those states — while surveys show that the perceived risk of cannabis use has declined. One national survey found that a growing proportion of American adults — 44% in 2021 — erroneously thought it safer to smoke cannabis daily than cigarettes. The authors of the study, in JAMA Network Open, noted that “these views do not reflect the existing science on cannabis and tobacco smoke.”

The cannabis industry also markets its products to older adults. The Trulieve chain gives a 10% discount, both in stores and online, to those it calls “wisdom” customers, 55 or older. Rise Dispensaries ran a yearlong cannabis education and empowerment program for two senior centers in Paterson, New Jersey, including field trips to its dispensary.

The industry has many satisfied older customers. Liz Logan, 67, a freelance writer in Bronxville, New York, had grappled with sleep problems and anxiety for years, but the conditions grew particularly debilitating two years ago, as her husband was dying of Parkinson’s disease. “I’d frequently be awake until 5 or 6 in the morning,” she said. “It makes you crazy.”

Looking online for edible cannabis products, Logan found that gummies containing cannabidiol, known as CBD, alone didn’t help, but those with 10 milligrams of THC did the trick without noticeable side effects. “I don’t worry about sleep anymore,” she said. “I’ve solved a lifelong problem.”

But studies in the United States and Canada, which legalized nonmedical cannabis use for adults nationally in 2018, show climbing rates of cannabis-related health care use among older people, both in outpatient settings and in hospitals.

In California, for instance, cannabis-related emergency room visits by those 65 or older rose, to 395 per 100,000 visits in 2019 from about 21 in 2005. In Ontario, acute care (meaning emergency visits or hospital admissions) resulting from cannabis use increased fivefold in middle-aged adults from 2008 to 2021, and more than 26 times among those 65 and up.

“It’s not reflective of everyone who’s using cannabis,” cautioned Daniel Myran, an investigator at the Bruyère Health Research Institute in Ottawa and lead author of the Ontario study. “It’s capturing people with more severe patterns.”

But since other studies have shown increased cardiac risk among some cannabis users with heart disease or diabetes, “there’s a number of warning signals,” he said.

For example, a disturbing proportion of older veterans who currently use cannabis screen positive for cannabis use disorder, a recent JAMA Network Open study found.

As with other substance use disorders, such patients “can tolerate high amounts,” said the lead author, Vira Pravosud, a cannabis researcher at the Northern California Institute for Research and Education. “They continue using even if it interferes with their social or work or family obligations” and may experience withdrawal if they stop.

Among 4,500 older veterans (with an average age of 73) seeking care at Department of Veterans Affairs health facilities, researchers found that more than 10% had reported cannabis use within the previous 30 days. Of those, 36% fit the criteria for mild, moderate, or severe cannabis use disorder, as established in the Diagnostic and Statistical Manual of Mental Disorders.

VA patients differ from the general population, Pravosud noted. They are much more likely to report substance misuse and have “higher rates of chronic diseases and disabilities, and mental health conditions like PTSD” that could lead to self-medication, she said.

Current VA policies don’t require clinicians to ask patients about cannabis use. Pravosud thinks that they should.

Moreover, “there’s increasing evidence of a potential effect on memory and cognition,” said Myran, citing his team’s study of Ontario patients with cannabis-related conditions going to emergency departments or being admitted to hospitals.

Compared with others of the same age and sex who were seeking care for other reasons, research shows these patients (ages 45 to 105) had 1.5 times the risk of a dementia diagnosis within five years, and 3.9 times the risk of that for the general population.

Even after adjusting for chronic health conditions and sociodemographic factors, those seeking acute care resulting from cannabis use had a 23% higher dementia risk than patients with noncannabis-related ailments, and a 72% higher risk than the general population.

None of these studies were randomized clinical trials, the researchers pointed out; they were observational and could not ascertain causality. Some cannabis research doesn’t specify whether users are smoking, vaping, ingesting or rubbing topical cannabis on aching joints; other studies lack relevant demographic information.

“It’s very frustrating that we’re not able to provide more individual guidance on safer modes of consumption, and on amounts of use that seem lower-risk,” Myran said. “It just highlights that the rapid expansion of regular cannabis use in North America is outpacing our knowledge.”

Still, given the health vulnerabilities of older people, and the far greater potency of current cannabis products compared with the weed of their youth, he and other researchers urge caution.

“If you view cannabis as a medicine, you should be open to the idea that there are groups who probably shouldn’t use it and that there are potential adverse effects from it,” he said. “Because that is true of all medicines.”

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

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SACRAMENTO, Calif. — After decades of unsuccessful efforts to improve California prison conditions ruled unconstitutional and blamed for record-high suicides, advocates and a federal judge are betting that bonuses and better work accommodations will finally be enough to attract and keep the mental health providers needed to treat prisoners.

The funds come from nearly $200 million in federal fines imposed because of California’s lack of progress in hiring sufficient mental health staff. They are being used for hiring and retention bonuses, including an extra $20,000 for psychologists and psychiatric social workers — roles with the highest vacancy rates — and $5,000 boosts for psychiatrists and recreational therapists.

“I think it’s important to point out that this is the money that the state saved by not hiring people for these positions,” said Michael Bien, an attorney representing the roughly one-third of California prisoners with serious mental illness in a class action lawsuit. “And we know that not hiring caused suffering, harm, and even death.”

The cash is aimed at countering a scarcity of mental health workers in California and across the country. State officials blame this dearth of workers for their chronic inability to meet hiring levels required by the long-running suit — a failure that led a federal judge to hold top officials in contempt of court last year. The funds are being distributed after an appeals court upheld the contempt order in March, saying staffing shortages affect whether prisoners have access to “essential, even lifesaving, care.” The spending plan was jointly developed by attorneys representing prisoners and state officials.

Janet Coffman, a professor at the University of California-San Francisco Institute for Health Policy Studies, said planned improvements in working conditions should help with hiring, but she was skeptical of the impact of bonuses.

“What I don’t see is the sustained increases, the increases in salaries over the long term, which is what I think is probably more effective for retention than one-time bonuses,” Coffman said.

The state did not take that view. Its expert witness, labor economist Erica Greulich, testifying during the 2023 trial that led to the fines, said that higher salaries were unlikely to meaningfully increase hiring.

Facing a $12 billion deficit, Gov. Gavin Newsom in May proposed $767 million in salary reductions across state government that would “make it extremely difficult to fill chronically vacant mental health positions,” said Abdul Johnson, chief negotiator for the bargaining unit representing health and social service professionals in prisons and other agencies. He said he believes California should add longevity pay to retain veteran workers and pay more in areas with higher costs of living.

On the face of it, the salaries for mental health positions at California prisons are competitive with the private sector’s. For example, the range for a prison psychologist is $133,932 to $162,372, while the annual mean for psychologists in California ranged from $117,630 to $137,540 last year. The most recent state contract with prison psychiatrists already includes 15% bonuses, on top of other sweeteners, with a state salary range topping $360,000, nearly $34,000 above the California mean salary.

But California prisons are competing for behavioral health workers amid a roughly 40% shortage of psychologists and psychiatrists in the state, and that shortfall is expected to get worse. For more than a year before the court’s contempt ruling, the vacancy rate for psychologists never fell below 35% — the state is currently recruiting for nearly 300 such positions — while vacancies among social workers ranged from 17% to 29%.  The court ruling said the state oversaw “adequate” staffing for psychiatrists and recreation therapists but only periodically succeeded in reducing the vacancy rate below the 10% maximum allowed. Officials are in the process of adding several new positions that are eligible for the bonuses.

Further complicating the hiring push is that other organizations recruiting these professionals can offer more competitive packages, which can include signing bonuses and other perks, according to testimony during the 2023 trial.

The state is also adopting a new hybrid work policy that allows mental health staff to spend part of their time working remotely. The policy will let the state better compete with the private sector, particularly in the remote areas where many prisons are located, Coffman said.

Money from the fines will also go to improving a working environment that the appellate decision said “often took the form of windowless converted cells in old and unheated prisons.” One-time payments ranging from $50,000 to $300,000 are going to various prison mental health programs for things like new furniture and improvements to treatment and office spaces.

“Working in a prison is difficult and dangerous work,” Johnson said. “Our members constantly face threats, physical assaults, and extremely high caseloads.”

Angela Reinhold, a supervising psychiatric social worker at the California Correctional Institution in Tehachapi, said during the 2023 hearings that her office was in a closet, featuring furniture from “1970s at best.”

She compared her situation with that of a co-worker who had recently left for a safer, higher-paying job in the private sector.

“She’s very excited that she gets a bathroom with two-ply toilet paper, not to mention the other office equipment that’s state-of-the-art, and treatment space, and an office that has a view,” Reinhold said. “She’s not risking her safety with her patients, and she gets to telework three times a week.”

Alexandra David, chief of mental health at the California Medical Facility in Vacaville, described working in buildings without adequate heating or cooling, with leaky ceilings and flooded clinical offices.

“You know, it’s an old prison. There are smells and sometimes rodents,” David said during the same hearings.

The California Department of Corrections and Rehabilitation did not respond to requests for comment on the spending plan.

In what Bien characterized as a bid to avoid ill will, all prison mental health workers will benefit from the new expenditures, with current employees and new hires each receiving one-time $10,000 bonuses. All corrections department employees, not just mental health workers, are also eligible for $5,000 bonuses for referrals leading to new hires in understaffed areas. The state estimates that the bonuses will cost about $44 million, although the projection does not include the referral bonuses or bonuses paid to new employees hired during the year.

Future bonuses and other incentives are likely to depend on recommendations from a court-appointed receiver who is developing a long-term plan to bring the prison mental health system up to constitutional standards.

“We do think they have to do better with money, but money alone is not the answer here,” Bien said. “And so that’s why we’re trying to do these working-conditions things, as well as bonuses.”

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

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

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KFF Health News chief Washington correspondent Julie Rovner discussed Trump administration cuts to the National Institutes of Health on WNYC’s “The Brian Lehrer Show” on June 3.

• Click here to hear Rovner on “The Brian Lehrer Show.”

KFF Health News Southern correspondent Sam Whitehead discussed Georgia’s abortion laws on WUGA’s “The Georgia Health Report” on May 30.

• Click here to hear Whitehead on “The Georgia Health Report.”

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Health and Human Services Secretary Robert F. Kennedy Jr. has repeatedly pledged to protect and improve health services for Native Americans — whether speaking during his late-January Senate confirmation hearing or an April trip to Arizona, where he met with tribal leaders. 

In some ways, he has. 

When layoffs were set to hit the Indian Health Service — the federal agency responsible for providing health care to Native Americans and Alaska Natives — Kennedy’s department rescinded the actions hours later. 

In April, while visiting Arizona’s Navajo Nation, Kennedy told KFF Health News he was making sure broader budget cuts and layoffs at HHS do not affect Native American communities. 

But tribal leaders expressed skepticism. They said they’ve already seen fallout from the sweeping reorganization across federal health agencies. Public health data is incomplete and agency communication has become less reliable. Tribes have also lost at least $6 million in grants from other HHS agencies, according to a letter the National Indian Health Board sent to Kennedy in May. 

“There may be a misconception among some of the administration that Indian Country is only impacted by changes to the Indian Health Service,” said Liz Malerba, a tribal policy expert and citizen of the Mohegan Tribe. “That’s simply not true.” 

Native Americans face higher rates of chronic diseases and die younger than other populations. Those inequities stem from centuries of systemic discrimination. The Indian Health Service has been chronically underfunded and understaffed, leading to gaps in care. 

Janet Alkire, chairperson of the Standing Rock Sioux Tribe in the Dakotas, said during a May Senate hearing that the canceled grants paid for community health workers, vaccinations, data modernization, and other public health efforts. 

Other programs — including ones aimed at Native American youth interested in science and medicine and increasing access to healthy foods — were slashed after the government said they violated the Trump administration’s ban on “diversity, equity, and inclusion.” 

Native leaders and organizations have requested tribal consultation, a legal process required when federal agencies consider changes that would affect tribal nations. Alkire and other tribal leaders at the Senate committee hearing said federal officials had not responded. 

“This is not just a moral question of what we owe Native people,” Sen. Brian Schatz (D-Hawaii) said at the hearing. “It is also a question of the law.” 

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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The Trump administration’s cancellation of $766 million in contracts to develop mRNA vaccines against potential pandemic flu viruses is the latest blow to national defense, former health security officials said. They warned that the U.S. could be at the mercy of other countries in the next pandemic.

“The administration’s actions are gutting our deterrence from biological threats,” said Beth Cameron, a senior adviser to the Brown University Pandemic Center and a former director at the White House National Security Council. “Canceling this investment is a signal that we are changing our posture on pandemic preparedness,” she added, “and that is not good for the American people.”

Flu pandemics killed up to 103 million people worldwide last century, researchers estimate.

In anticipation of the next big one, the U.S. government began bolstering the nation’s pandemic flu defenses during the George W. Bush administration. These strategies were designed by the security council and the Biomedical Advanced Research and Development Authority at the Department of Health and Human Services, among other agencies. The plans rely on rolling out vaccines rapidly in a pandemic. Moving fast hinges on producing vaccines domestically, ensuring their safety, and getting them into arms across the nation through the public health system.

The Trump administration is undermining each of these steps as it guts health agencies, cuts research and health budgets, and issues perplexing policy changes, health security experts said.

Since President Donald Trump took office, at least half of the security council’s staff have been laid off or left, and the future of BARDA is murky. The nation’s top vaccine adviser, Peter Marks, resigned under pressure in March, citing “the unprecedented assault on scientific truth.”

Most recently, Trump’s clawback of funds for mRNA vaccine development put Americans on shakier ground in the next pandemic. “When the need hits and we aren’t ready, no other country will come to our rescue and we will suffer greatly,” said Rick Bright, an immunologist and a former BARDA director.

Countries that produced their own vaccines in the covid-19 pandemic had first dibs on the shots. While the United States, home to Moderna and Pfizer, rolled out second doses of mRNA vaccines in 2021, hundreds of thousands of people in countries that didn’t manufacture vaccines died waiting for them.

The most pertinent pandemic threat today is the bird flu virus H5N1. Researchers around the world were alarmed when it began spreading among cattle in the U.S. last year. Cows are closer to humans biologically than birds, indicating that the virus had evolved to thrive in cells like our own.

As hundreds of herds and dozens of people were infected in the U.S., the Biden administration funded Moderna to develop bird flu vaccines using mRNA technology. As part of the agreement, the U.S. government stipulated it could purchase doses in advance of a pandemic. That no longer stands.

Researchers can make bird flu vaccines in other ways, but mRNA vaccines are developed much more quickly because they don’t rely on finicky biological processes, such as growing elements of vaccines in chicken eggs or cells kept alive in laboratory tanks.

Time matters because flu viruses mutate constantly, and vaccines work better when they match whatever variant is circulating.

Developing vaccines within eggs or cells can take 10 months after the genetic sequence of a variant is known, Bright said. And relying on eggs presents an additional risk when it comes to bird flu because a pandemic could wipe out billions of chickens, crashing egg supplies.

Decades-old methods that rely on inactivated flu viruses are riskier for researchers and time-consuming. Still the Trump administration invested $500 million into this approach, which was largely abandoned by the 1980s after it caused seizures in children.

“This politicized regression is baffling,” Bright said.

A bird flu pandemic may begin quietly in the U.S. if the virus evolves to spread between people but no one is tested at first. Indeed, the Centers for Disease Control and Prevention’s dashboard suggests that only 10 farmworkers have been tested for the bird flu since March. Because of their close contact with cattle and poultry, farmworkers are at highest risk of infection.

As with many diseases, only a fraction of people with the bird flu become severely sick. So the first sign that the virus is widespread might be a surge in hospital cases.

“We’d need to immediately make vaccines,” said Angela Rasmussen, a virologist at the University of Saskatchewan in Canada.

The U.S. government could scale up production of existing bird flu vaccines developed in eggs or cells. However, these vaccines target an older strain of H5N1 and their efficacy against the virus circulating now is unknown.

In addition to the months it takes to develop an updated version within eggs or cells, Rasmussen questioned the ability of the government to rapidly test and license updated shots, with a quarter of HHS staff gone. If the Senate approves Trump’s proposed budget, the agency faces about $32 billion in cuts.

Further, the Trump administration’s cuts to biomedical research and its push to slash grant money for overhead costs could undermine academic hospitals, rendering them unable to conduct large clinical trials. And its cuts to the CDC and to public health funds to states mean that fewer health officials will be available in an emergency.

“You can’t just turn this all back on,” Rasmussen said. “The longer it takes to respond, the more people die.”

Researchers suggest other countries would produce bird flu vaccines first. “The U.S. may be on the receiving end like India was, where everyone — rich people, too — got vaccines late,” said Achal Prabhala, a public health researcher in India at medicines access group AccessIBSA.

He sits on the board of a World Health Organization initiative to improve access to mRNA vaccines in the next pandemic. A member of the initiative, the company Sinergium Biotech in Argentina, is testing an mRNA vaccine against the bird flu. If it works, Sinergium will share the intellectual property behind the vaccine with about a dozen other groups in the program from middle-income countries so they can produce it.

The Coalition for Epidemic Preparedness Innovations, an international partnership headquartered in Norway, is providing funds to research groups developing rapid-response vaccine technology, including mRNA, in South Korea, Singapore, and France. And CEPI committed up to $20 million to efforts to prepare for a bird flu pandemic. This year, the Indian government issued a call for grant applications to develop mRNA vaccines for the bird flu, warning it “poses a grave public health risk.”

Pharmaceutical companies are investing in mRNA vaccines for the bird flu as well. However, Prabhala says private capital isn’t sufficient to bring early-stage vaccines through clinical trials and large-scale manufacturing. That’s because there’s no market for bird flu vaccines until a pandemic hits.

Limited supplies means the United States would have to wait in line for mRNA vaccines made abroad. States and cities may compete against one another for deals with outside governments and companies, like they did for medical equipment at the peak of the covid pandemic.

“I fear we will once again see the kind of hunger games we saw in 2020,” Cameron said.

In an email response to queries, HHS communications director Andrew Nixon said, “We concluded that continued investment in Moderna’s H5N1 mRNA vaccine was not scientifically or ethically justifiable.” He added, “The decision reflects broader concerns about the use of mRNA platforms—particularly in light of mounting evidence of adverse events associated with COVID-19 mRNA vaccines.”

Nixon did not back up the claim by citing analyses published in scientific journals.

In dozens of published studies, researchers have found that mRNA vaccines against covid are safe. For example, a placebo-controlled trial of more than 30,000 people in the U.S. found that adverse effects of Moderna’s vaccine were rare and transient, whereas 30 participants in the placebo group suffered severe cases of covid and one died.

More recently, a study revealed that three of nearly 20,000 people who got Moderna’s vaccines and booster had significant adverse effects related to the vaccine, which resolved within a few months. Covid, on the other hand, killed four people during the course of the study.

As for concerns about the heart issue, myocarditis, a study of 2.5 million people who got at least one dose of Pfizer’s mRNA vaccine revealed about 2 cases per 100,000 people. Covid causes 10 to 105 myocarditis cases per 100,000.

Nonetheless, HHS Secretary Robert F. Kennedy Jr., who founded an anti-vaccine organization, has falsely called covid shots “the deadliest vaccine ever made.” And without providing evidence, he said the 1918 flu pandemic “came from vaccine research.”

Politicized mistrust in vaccines has grown. Far more Republicans said they trust Kennedy to provide reliable information on vaccines than their local health department or the CDC in a recent KFF poll: 73% versus about half.

Should the bird flu become a pandemic in the next few years, Rasmussen said, “we will be screwed on multiple levels.”

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Esther Bejarano’s son was 11 months old when asthma landed him in the hospital. She didn’t know what had triggered his symptoms — neither she nor her husband had asthma — but she suspected it was the pesticides sprayed on the agricultural fields near her family’s home.

Pesticides are a known contributor to asthma and are commonly used where Bejarano lives in California’s Imperial Valley, a landlocked region that straddles two counties on the U.S.-Mexico border and is one of the main producers of the nation’s winter crops. It also has some of the worst air pollution in the nation and one of the highest rates of childhood asthma emergency room visits in the state, according to data collected by the California Department of Public Health.

Bejarano has since learned to manage her now-19-year-old son’s asthma and works at Comite Civico del Valle, a local rights organization focused on environmental justice in the Imperial Valley. The organization trains health care workers to educate patients on proper asthma management, enabling them to avoid hospitalization and eliminate triggers at home. The course is so popular that there’s a waiting list, Bejarano said.

But the group’s Asthma Management Academy program and similar initiatives nationwide face extinction with the Trump administration’s mass layoffs, grant cancellations, and proposed budget cuts at the Department of Health and Human Services and the Environmental Protection Agency. Asthma experts fear the cumulative impact of the reductions could result in more ER visits and deaths, particularly for children and people in low-income communities — populations disproportionately vulnerable to the disease.

“Asthma is a preventive condition,” Bejarano said. “No one should die of asthma.”

Asthma can block airways, making it hard to breathe, and in severe cases can cause death if not treated quickly. Nearly 28 million people in the U.S. have asthma, and about 10 people still die every day from the disease, according to the Asthma and Allergy Foundation of America.

In May, the White House released a budget proposal that would permanently shutter the Centers for Disease Control and Prevention’s National Asthma Control Program, which was already gutted by federal health department layoffs in April. It’s unclear whether Congress will approve the closure.

Last year, the program allotted $33.5 million to state-administered initiatives in 27 states, Puerto Rico, and Washington, D.C., to help communities with asthma education. The funding is distributed in four-year grant cycles, during which the programs receive up to $725,000 each annually.

Comite Civico del Valle’s academy in Southern California, a clinician workshop in Houston, and asthma medical management training in Allentown, Pennsylvania — ranked the most challenging U.S. city to live in with asthma — are among the programs largely surviving on these grants. The first year of the current grant cycle ends Aug. 31, and it’s unknown whether funding will continue beyond then.

Data suggests that the CDC’s National Asthma Control Program has had a significant impact. The agency’s own research has shown that the program saves $71 in health care costs for every $1 invested. And the asthma death rate decreased 44% between the 1999 launch of the program and 2021, according to the American Lung Association.

“Losing support from the CDC will have devastating impacts on asthma programs in states and communities across the country, programs that we know are improving the lives of millions of people with asthma,” said Anne Kelsey Lamb, director of the Public Health Institute’s Regional Asthma Management and Prevention program. “And the thing is that we know a lot about what works to help people keep their asthma well controlled, and that’s why it’s so devastating.”

The Trump administration cited cost savings and efficiency in its April announcement of the cuts to HHS. Requests for comment from the White House and CDC about cuts to federal asthma and related programs were not answered.

The Information Wars

Fresno, in the heart of California’s Central Valley, is one of the country’s top 20 “asthma capitals,” with high rates of asthma and related emergencies and deaths. It’s home to programs that receive funding through the National Asthma Control Program. Health care professionals there also rely on another aspect of the program that is under threat if it’s shuttered: countrywide data.

The federal asthma program collects information on asthma rates and offers a tool to study prevalence and rates of death from the disease, see what populations are most affected, and assess state and local trends. Asthma educators and health care providers worry that the loss of these numbers could be the biggest impact of the cuts, because it would mean a dearth of information crucial to forming educated recommendations and treatment plans.

“How do we justify the services we provide if the data isn’t there?” said Graciela Anaya, director of community health at the Central California Asthma Collaborative in Fresno.

Mitchell Grayson, chair of the Asthma and Allergy Foundation’s Medical Scientific Council, is similarly concerned.

“My fear is we’re going to live in a world that is frozen in Jan. 19, 2025, as far as data, because that was the last time you know that this information was safely collected,” he said.

Grayson, an allergist who practices in Columbus, Ohio, said he also worries government websites will delete important recommendations that asthma sufferers avoid heavy air pollution, get annual flu shots, and get covid-19 vaccines.

Disproportionate Risk

Asthma disproportionately affects communities of color because of “historic structural issues,” said Lynda Mitchell, CEO of the Asthma and Allergy Network, citing a higher likelihood of living in public housing or near highways and other pollution sources.

She and other experts in the field said cuts to diversity initiatives across federal agencies, combined with the rollback of environmental protections, will have an outsize impact on these at-risk populations.

In December, the Biden administration awarded nearly $1.6 billion through the EPA’s Community Change Grants program to help disadvantaged communities address pollution and climate threats. The Trump administration moved to cut this funding in March. The grant freezes, which have been temporarily blocked by the courts, are part of a broader effort by the Trump EPA to eliminate aid to environmental justice programs across the agency.

In 2023 and 2024, the National Institutes of Health’s Climate Change and Health Initiative received $40 million for research, including on the link between asthma and climate change. The Trump administration has moved to cut that money. And a March memo essentially halted all NIH grants focused on diversity, equity, and inclusion, or DEI — funds many of the asthma programs serving low-income communities rely on to operate.

On top of those cuts, environmental advocates like Isabel González Whitaker of Memphis, Tennessee, worry that the proposed reversals of environmental regulations will further harm the health of communities like hers that are already reeling from the effects of climate change. Shelby County, home to Memphis, recently received an “F” on the American Lung Association’s annual report card for having so many high ozone days. González Whitaker is director of EcoMadres, a program within the national organization Moms for Clean Air that advocates for better environmental conditions for Latino communities.

“Urgent asthma needs in communities are getting defunded at a time when I just see things getting worse in terms of deregulation,” said González Whitaker, who took her 12-year-old son to the hospital because of breathing issues for the first time this year. “We’re being assaulted by this data and science, which is clearly stating that we need to be doing better around preserving the regulations.”

Back in California’s Imperial Valley — where the majority-Hispanic, working-class population surrounds California’s largest lake, the Salton Sea — is an area called Bombay Beach. Bejarano calls it the “forgotten community.” Homes there lack clean running water, because of naturally occurring arsenic in the groundwater, and residents frequently experience a smell like rotten eggs blowing off the drying lakebed, exposing decades of pesticide-tinged dirt.

In 2022, a 12-year-old girl died in Bombay Beach after an asthma attack. Bejarano said she later learned that the girl’s school had recommended that she take part in Comite Civico del Valle’s at-home asthma education program. She said the girl was on the waiting list when she died.

“It hit home. Her death showed the personal need we have here in Imperial County,” Bejarano said. “Deaths are preventable. Asthma is reversible. If you have asthma, you should be able to live a healthy life.”

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The Host Julie Rovner KFF Health News @jrovner @julierovner.bsky.social Read Julie's stories. Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

After narrowly passing in the House in May, President Donald Trump’s “One Big Beautiful Bill” has now arrived in the Senate, where Republicans are struggling to decide whether to pass it, change it, or — as Elon Musk, who recently stepped back from advising Trump, is demanding — kill it. 

Adding fuel to the fire, the Congressional Budget Office estimates the bill as written would increase the number of Americans without health insurance by nearly 11 million over the next decade. That number would grow to approximately 16 million should Republicans also not extend additional subsidies for the Affordable Care Act, which expire at year’s end. 

This week’s panelists are Julie Rovner of KFF Health News, Jessie Hellmann of CQ Roll Call, Alice Miranda Ollstein of Politico, and Lauren Weber of The Washington Post.

Panelists Jessie Hellmann CQ Roll Call @jessiehellmann @jessiehellmann.bsky.social Read Jessie's stories. Alice Miranda Ollstein Politico @AliceOllstein @alicemiranda.bsky.social Read Alice's stories. Lauren Weber The Washington Post @LaurenWeberHP Read Lauren's stories.

Among the takeaways from this week’s episode:

• Even before the CBO released estimates of how many Americans stand to lose health coverage under the House-passed budget reconciliation bill, Republicans in Washington were casting doubt on the nonpartisan office’s findings — as they did during their 2017 Affordable Care Act repeal effort.
• Responding to concerns about proposed Medicaid cuts, Iowa Sen. Joni Ernst, a Republican, this week stood behind her controversial rejoinder at a town hall that “we’re all going to die.” The remark and its public response illuminated the problematic politics Republicans face in reducing benefits on which their constituents rely — and may foreshadow campaign fights to come.
• Journalists revealed that Health and Human Services Secretary Robert F. Kennedy Jr.’s report on children’s health may have been generated at least in part by artificial intelligence. The telltale signs in the report of what are called “AI hallucinations” included citations to scientific studies that don’t exist and a garbled interpretation of the findings of other research, raising further questions about the validity of the report’s recommendations.
• And the Trump administration this week revoked Biden-era guidance on the Emergency Medical Treatment and Active Labor Act. Regardless, the underlying law instructing hospitals to care for those experiencing pregnancy emergencies still applies.

Also this week, Rovner interviews KFF Health News’ Arielle Zionts, who reported and wrote the latest “Bill of the Month” feature, about a Medicaid patient who had an emergency in another state and the big bill he got for his troubles. If you have an infuriating, outrageous, or baffling medical bill you’d like to share with us, you can do that here.

Plus, for “extra credit,” the panelists suggest health policy stories they read (or wrote) this week that they think you should read, too:

Julie Rovner: KFF Health News’ “Native Americans Hurt by Federal Health Cuts, Despite RFK Jr.’s Promises of Protection,” by Katheryn Houghton, Jazmin Orozco Rodriguez, and Arielle Zionts.

Alice Miranda Ollstein: Politico’s “‘They’re the Backbone’: Trump’s Targeting of Legal Immigrants Threatens Health Sector,” by Alice Miranda Ollstein.

Lauren Weber: The New York Times’ “Take the Quiz: Could You Manage as a Poor American?” by Emily Badger and Margot Sanger-Katz.

Jessie Hellmann: The New York Times’ “A DNA Technique Is Finding Women Who Left Their Babies for Dead,” by Isabelle Taft.

Also mentioned in this week’s podcast:

• NOTUS.org’s “The MAHA Report Cites Studies That Don’t Exist,” by Emily Kennard and Margaret Manto.
• The Washington Post’s “White House MAHA Report May Have Garbled Science by Using AI, Experts Say,” by Lauren Weber and Caitlin Gilbert.

Credits Francis Ying Audio producer Emmarie Huetteman Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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

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ST. LOUIS — Violent crime was already trending down from a covid-era spike when President Donald Trump presented a picture of unbridled crime in America on the campaign trail in 2024. Now his administration has eliminated about $500 million in grants to organizations that buttress public safety, including many working to prevent gun violence.

In Oakland, California, a hospital-based program to prevent retaliatory gun violence lost a $2 million grant just as the traditionally turbulent summer months approach. Another $2 million award was pulled from a Detroit program that offers social services and job skills to young people in violent neighborhoods. And in St. Louis, a clinic treating the physical and emotional injuries of gunshot victims also lost a $2 million award.

They are among 373 grants that the U.S. Department of Justice abruptly terminated in April. The largest share of the nixed awards were designated for community-based violence intervention — programs that range from conflict mediation and de-escalation to hospital-based initiatives that seek to prevent retaliation from people who experience violent injuries.

Gun violence is among America’s most deadly public health crises, medical experts say.

Among programs whose grants were terminated were those for protecting children, victims’ assistance, hate-crime prevention, and law enforcement and prosecution, according to an analysis by the Council on Criminal Justice, a nonpartisan think tank. The grants totaled $820 million when awarded, but some of that money has been spent.

“Not only are these funds being pulled away from worthy investments that will save lives,” said Thomas Abt, founding director of the Violence Reduction Center at the University of Maryland, “but the way that this was done — by pulling authorized funding without warning — is going to create a lasting legacy of mistrust."

The Justice Department “is focused on prosecuting criminals, getting illegal drugs off the streets, and protecting all Americans from violent crime,” according to a statement provided by agency spokesperson Natalie Baldassarre. “Discretionary funds that are not aligned with the administration’s priorities are subject to review and reallocation, including funding for clinics that engage in race-based selectivity.”

The Council on Criminal Justice analysis of the terminated grants found that descriptions of 31% of them included references to “diversity,” “equity,” “race,” “racial,” “racism,” or “gender.”

Baldassarre’s statement said the department is committed to working with organizations “to hear any appeal, and to restore funding as appropriate.” Indeed, it restored seven of the terminated grants for victims’ services after Reuters reported on the cuts in April.

But the cuts have already prompted layoffs and reductions at other organizations around the country. Five groups filed a lawsuit on May 21 to restore the grants in their entirety.

Joseph Griffin, executive director of the Oakland nonprofit Youth Alive, which pioneered hospital-based violence intervention in the 1990s, said his organization had spent only about $60,000 of its $2 million grant before it was axed. The grant was primarily to support the intervention program and was awarded for a three-year period but lasted just seven months. The money would have helped pay to intervene with about 30 survivors of gun violence to prevent retaliatory violence. He’s trying to find a way to continue the work, without overtaxing his team.

“We will not abandon a survivor of violence at the hospital bedside in the same way that the federal government is abandoning our field,” he said.

Related Links

• Hospital Gun-Violence Prevention Programs May Be Caught in US Funding Crossfire Mar 13, 2025
• Super Bowl Rally Shooting Victims Pick Up Pieces, but Gun Violence Haunts Their Lives Oct 17, 2024
• ‘Everybody in This Community Has a Gun’: How Oakland Lost Its Grip on Gun Violence Nov 28, 2023

The cuts are also hitting St. Louis, often dogged by being labeled one of the most dangerous cities in America. The city created an Office of Violence Prevention with money available under former President Joe Biden, and various groups received Justice Department grants, too.

Locals say the efforts have helped: The 33% drop in the city’s homicide rate from 2019 to 2024 was the second-largest decrease among 29 major cities examined by the Council on Criminal Justice.

“I don't think there's any doubt that there's some positive impact from the work that's happening,” said University of Missouri-St. Louis criminologist Chris Sullivan, who received a grant from the Justice Department to assess the work of the city’s new Office of Violence Prevention. That research grant remains in place.

But the Justice Department slashed two other grants in St. Louis, including $2 million for Power4STL. The nonprofit operates the Bullet Related Injury Clinic, dubbed the BRIC, which provides free treatment for physical and mental injuries caused by bullets.

The BRIC had about $1.3 million left on its grant when the award was terminated in April. LJ Punch, a former trauma surgeon who founded the clinic in 2020, said it was intended to fund a mobile clinic, expand mental health services, evaluate the clinic’s programs, and pay for a patient advisory board. The BRIC won't abandon those initiatives, Punch said, but will likely need to move slower.

Keisha Blanchard joined the BRIC’s advisory board after her experience as a patient at the clinic following a January 2024 gun injury. Someone fired a bullet into her back from the rear window of a Chevy Impala while Blanchard was out for a lunchtime stroll with a friend from her neighborhood walking group. The shooting was random, Blanchard said, but people always assume she did something to provoke it. “It’s so much shame that comes behind that,” she said.

The 42-year-old said the shooting and her initial medical treatment left her feeling angry and unseen. Her family wasn’t allowed to be with her at the hospital since the police didn’t know who shot her or why. When she asked about taking the bullet out, she was told that the common medical practice is to leave it in. “We're not in the business of removing bullets,” she recalled being told. At a follow-up appointment, she said, she watched her primary care doctor google what to do for a gunshot wound.

“Nobody cares what's going to happen to me after this,” Blanchard recalled thinking.

Before she was referred to the BRIC, she said, she was treated as though she should be happy just to be alive. But a part of her died in the shooting, she said. Her joyful, carefree attitude gave way to hypervigilance. She stopped taking walks. She uprooted herself, moving to a neighborhood 20 miles away.

The bullet stayed lodged inside her, forcing her to carry a constant reminder of the violence that shattered her sense of safety, until Punch removed it from her back in November. Blanchard said the removal made her feel “reborn.”

It’s a familiar experience among shooting survivors, according to Punch.

“People talk about the distress about having bullets still inside their bodies, and how every waking conscious moment brings them back to the fact that that's still inside,” Punch said. “But they're told repeatedly inside conventional care settings that there's nothing that needs to be done.”

The Justice Department grant to the BRIC had been an acknowledgment, Punch said, that healing has a role in public safety by quelling retaliatory violence.

“The unhealed trauma in the body of someone who's gotten the message that they are not safe can rapidly turn into an act of violence when that person is threatened again,” Punch said.

Community gun violence, even in large cities, is concentrated among relatively small groups of people who are often both victims and perpetrators, according to researchers. Violence reduction initiatives are frequently tailored to those networks.

Jennifer Lorentz heads the Diversion Unit in the office of the St. Louis Circuit Attorney, the city’s chief prosecutor. The unit offers mostly young, nonviolent offenders an opportunity to avoid prosecution by completing a program to address the issues that initially led to their arrest. About 80% of the participants have experienced gun violence and are referred to the BRIC, Lorentz said, calling the clinic critical to her program’s success.

“We're getting them these resources, and we're changing the trajectory of their lives,” Lorentz said. “Helping people is part of public safety.”

Punch said the BRIC staffers were encouraged during the Justice Department application process to emphasize their reach into St. Louis’ Black community, which is disproportionately affected by gun violence. He suspects that emphasis is why its grant was terminated.

Punch likened the grant terminations to only partially treating tuberculosis, which allows the highly infectious disease to become resistant to medicine.

“If you partially extend a helping hand to somebody, and then you rip it away right when they start to trust you, you assure they will never trust you again,” he said. “If your intention is to prevent violence, you don't do that.”

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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HHS announces the appointment of Paula M. Stannard as Director of the Office for Civil Rights

Gov. Gavin Newsom wants to block a California law from taking effect next year that will require nursing homes to have a 96-hour backup power supply, potentially giving the industry a reprieve from having to spend over $1 billion in capital investments.

The Democratic governor tucked the suspension into his budget update to address a projected $12 billion state deficit. If lawmakers go along, it will be the second time nursing homes have forestalled spending on generators or other power supplies required to keep ventilators, feeding and IV pumps, and medication dispensing machines running during emergencies, such as wildfires.

“Really? After what just happened earlier this year in Los Angeles, we think fire safety and emergency preparedness is where we want to make cuts?” said Tony Chicotel, a senior staff attorney with the California Advocates for Nursing Home Reform. “The timing is really just shocking.”

California law requires skilled nursing facilities to provide six hours of backup power, from generators or other sources, to run heating and cooling systems and lifesaving medical equipment when utilities shut off power to prevent wildfires or when power is lost. Federal guidelines require nursing homes to have emergency response plans that include backup power or building evacuation.

Starting next year, most of California’s roughly 1,200 facilities must extend their backup power capability to 96 hours under AB 2511, which lawmakers passed and Newsom signed in 2022. The bill was a victory for patient advocates who for years had urged the state to stretch the requirement, with power shutoffs becoming more frequent and lasting longer. Shutoffs in October 2019 lasted days, cutting power to more than 100 nursing homes in the state.

The governor’s office did not return multiple requests for comment.

Since the 96-hour bill became law, the long-term care sector has made multiple requests for an extension, citing costs over $1 billion to make capital investments. They won a two-year extension last year. Only 34 nursing homes comply with the law, according to the California Department of Health Care Access and Information.

Corey Egel, a spokesperson for the California Association of Health Facilities, said nursing facilities are asking for funding to make the changes. He said that between 800 and 900 of the state’s 1,241 nursing facilities will need “substantial modifications,” costing at least $1 million per facility, to meet the requirements of AB 2511. He added that some building upgrades will cost as much as $3.2 million.

Adding backup power supplies often requires big changes to electrical and HVAC systems, all of which need state and local permits. The process can take years, and current supply chain constraints and tariff-related delays could add to those challenges, Egel said.

“A number of facilities, especially those in urban areas, were not constructed with adequate space for generators of this size. In some instances, accommodating a unit comparable in size to a semitruck is not feasible,” Egel said.

Charlene Harrington, a professor and researcher at the University of California-San Francisco who studies nursing homes, said the industry’s lobbying against stricter regulations and enforcement has succeeded largely because nursing home owners have been good at hiding their profits.

“When you have a governor who is running for president, they’re susceptible to tremendous influence,” Harrington said of Newsom, who is widely expected to launch a 2028 presidential bid. And nursing homes, she said, “have been very effective in arguing that they’re losing money.”

Nationally, efforts to more effectively regulate the nursing home industry or enforce tougher standards have often fallen flat, even as the quality of care in skilled nursing facilities has been a concern for years.

In April, a federal judge in Texas blocked a Biden administration rule to increase staffing at nursing homes, even though research has found low staffing to be at the root of many of the quality issues across such facilities. An investigation published in early May by Harrington and other researchers found that most facilities have nurse staffing levels “well below” the expected staffing based on resident needs and federal minimum staffing requirements.

“They’re jeopardizing the safety of their patients,” Harrington said.

While federal regulations require nursing homes to have emergency plans with options for backup power or evacuations, some states demand additional preparedness. After 12 people died in an overheated nursing home after Hurricane Irma knocked out the power, Florida in 2018 enacted legislation requiring nursing homes and assisted living facilities to have a generator capable of keeping patient areas at 81 degrees Fahrenheit or lower for at least four days. One report found most facilities were compliant by 2021.

Maryland requires assisted living facilities to maintain emergency generators that can run for 48 hours, and Virginia requires generators on-site. And this year, Texas lawmakers have filed bills to require generators in nursing homes and assisted living facilities.

In California, it took groups representing about 400,000 nursing home residents several years to secure the rule for extended backup power, overcoming a veto by Newsom in 2020. “Put simply, any loss of electrical power puts nursing home residents in peril, since most are extraordinarily vulnerable, and many rely on electrical-powered life support systems,” state AARP director Nancy McPherson wrote in a December 2020 policy letter to the California Department of Public Health. “Unsafe temperatures, unrefrigerated medications, and medical devices without power can all have deadly consequences for nursing home residents.”

It’s unclear whether lawmakers will go along with Newsom’s request. State senators are advancing separate legislation in committee that would mandate 72 hours of backup power at assisted living facilities that are home to 16 or more residents. Such facilities are not considered health care operations and have different regulations in California.

Democratic Assembly member Jacqui Irwin, who authored the 96-hour law, expressed frustration with the governor for “attempting to bureaucratically veto” her legislation, noting that climate-related threats, such as power shutoffs, have only increased.

Irwin said Newsom’s budget proposal “for an indefinite suspension of the requirement abandons California seniors and those recuperating from an illness or surgery.”

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

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

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JoEllen Zembruski-Ruple, while in the care of New York City’s renowned Memorial Sloan Kettering Cancer Center, swallowed the first three chemotherapy pills to treat her squamous cell carcinoma on Jan. 29, her family members said. They didn’t realize the drug could kill her.

Six days later, Zembruski-Ruple went to Sloan Kettering’s urgent care department to treat sores in her mouth and swelling around her eyes. The hospital diagnosed oral yeast infection and sent her home, her sister and partner said. Two days later, they said, she returned in agony — with severe diarrhea and vomiting — and was admitted. “Enzyme deficiency,” Zembruski-Ruple texted a friend.

The 65-year-old, a patient advocate who had worked for the National Multiple Sclerosis Society and other groups, would never go home.

Covered in bruises and unable to swallow or talk, she eventually entered hospice care and died March 25 from the very drug that was supposed to extend her life, said her longtime partner, Richard Khavkine. Zembruski-Ruple was deficient in the enzyme that metabolizes capecitabine, the chemotherapy drug she took, said Khavkine and Susan Zembruski, one of her sisters. Zembruski-Ruple was among about 1,300 Americans each year who die from the toxic effects of that pill or its cousin, the IV drug fluorouracil known as 5-FU.

Doctors can test for the deficiency — and then either switch drugs or lower the dosage if patients have a genetic variant that carries risk. The FDA approved an antidote in 2015, but it’s expensive and must be administered within four days of the first chemotherapy treatment.

Newer cancer drugs sometimes include a companion diagnostic to determine whether a drug works with an individual patient’s genetics. But 5-FU went on the market in 1962 and sells for about $17 a dose; producers of its generic aren’t seeking approval for toxicity tests, which typically cost hundreds of dollars. Doctors have only gradually understood which gene variants are dangerous in which patients, and how to deal with them, said Alan Venook, a colorectal and liver cancer specialist at the University of California-San Francisco.

By the time Zembruski-Ruple’s doctors told her she had the deficiency, she had been on the drug for eight days, said Khavkine, who watched over his partner with her sister throughout the seven-week ordeal.

Khavkine said he “would have asked for the test” if he had known about it, but added “nobody told us about the possibility of this deficiency.” Zembruski-Ruple’s sister also said she wasn’t warned about the fatal risks of the chemo, or told about the test.

“They never said why they didn’t test her,” Zembruski said. “If the test existed, they should have said there is a test. If they said, ‘Insurance won’t cover it,’ I would have said, ‘Here’s my credit card.’ We should have known about it.”

Guidance Moves at a Glacial Pace

Despite growing awareness of the deficiency, and an advocacy group made up of grieving friends and relatives who push for routine testing of all patients before they take the drug, the medical establishment has moved slowly.

A panel of the National Comprehensive Cancer Network, or NCCN — specialists from Sloan Kettering and other top research centers — until recently did not recommend testing, and the FDA does not require it.

In response to a query from KFF Health News about its policy, Sloan Kettering spokesperson Courtney Nowak said the hospital treats patients “in accordance with NCCN guidelines.” She said the hospital would not discuss a patient’s care.

On Jan. 24, the FDA issued a warning about the enzyme deficiency in which it urged health care providers to “inform patients prior to treatment” about the risks of taking 5-FU and capecitabine.

On March 31 — six days after Zembruski-Ruple’s death — the network’s expert panel for most gastrointestinal cancers took a first step toward recommending testing for the deficiency.

Worried that President Donald Trump’s FDA might do nothing, Venook said, the panel — whose guidance shapes the practices of oncologists and health insurers — recommended that doctors consider testing before dosing patients with 5-FU or capecitabine.

However, its guidance stated that “no specific test is recommended at this time,” citing a lack of data to “inform dose adjustments.”

Sloan Kettering “will consider this guidance in developing personalized treatment plans for each patient,” Nowak told KFF Health News.

The new NCCN guidance was “not the blanket recommendation we were working toward, but it is a major step toward our ultimate goal,” said Kerin Milesky, a public health official in Brewster, Massachusetts, who’s part of an advocacy group for testing. Her husband, Larry, died two years ago at age 73 after a single treatment of capecitabine.

European drug regulators began urging oncologists to test patients for deficiency in May 2020. Patients with potentially risky genetics are started on a half-dose of the cancer drug. If they suffer no major toxicity, the dose is increased.

A Lifesaving Ultimatum?

Emily Alimonti, a 42-year-old biotech salesperson in upstate New York, chose that path before starting capecitabine treatment in December. She said her doctors — including an oncologist at Sloan Kettering — told her they didn’t do deficiency testing, but Alimonti insisted. “Nope,” she said. “I’m not starting it until I get the test back.”

The test showed that Alimonti had a copy of a risky gene variant, so doctors gave her a lower dose of the drug. Even that has been hard to tolerate; she’s had to skip doses because of low white blood cell counts, Alimonti said. She still doesn’t know whether her insurer will cover the test.

Around 300,000 people are treated with 5-FU or capecitabine in the United States each year, but its toxicity could well have prevented FDA approval were it up for approval today. Short of withdrawing a drug, however, U.S. regulators have little power to manage its use. And 5-FU and capecitabine are still powerful tools against many cancers.

At a January workshop that included FDA officials and cancer specialists, Venook, the NCCN panel’s co-chair, asked whether it was reasonable to recommend that doctors obtain a genetic test “without saying what to do with the result.”

But Richard Pazdur, the FDA’s top cancer expert, said it was time to end the debate and commence testing, even if the results could be ambiguous. “If you don’t have the information, how do you have counseling?” he asked.

Two months later, Venook’s panel changed course. The price of tests has fallen below $300 and results can be returned as soon as three days, Venook said. Doubts about the FDA’s ability to further confront the issue spurred the panel’s change of heart, he said.

“I don’t know if FDA is going to exist tomorrow,” Venook told KFF Health News. “They’re taking a wrecking ball to common sense, and that’s one of the reasons we felt we had to go forward.”

On May 20, the FDA posted a Federal Register notice seeking public input on the issue, a move that suggested it was considering further action.

Venook said he often tests his own patients, but the results can be fuzzy. If the test finds two copies of certain dangerous gene variants in a patient, he avoids using the drug. But such cases are rare — and Zembruski-Ruple was one of them, according to her sister and Khavkine.

Many more patients have a single copy of a suspect gene, an ambiguous result that requires clinical judgment to assess, Venook said.

A full-gene scan would provide more information but adds expense and time, and even then the answer may be murky, Venook said. He worries that starting patients on lower doses could mean fewer cures, especially for newly diagnosed colon cancer patients.

Power Should Rest With Patients

Scott Kapoor, a Toronto-area emergency room physician whose brother Anil, a much-loved urologist and surgeon, died of 5-FU toxicity at age 58 in 2023, views Venook’s arguments as medical paternalism. Patients should decide whether to test and what to do with the results, he said.

“What’s better — don’t tell the patient about the test, don’t test them, potentially kill them in 20 days?” he said. “Or tell them about the testing while warning that potentially the cancer will kill them in a year?”

“People say oncologists don’t know what to do with the information,” said Karen Merritt, whose mother died after an infusion of 5-FU in 2014. “Well, I’m not a doctor, but I can understand the Mayo Clinic report on it.”

The Mayo Clinic recommends starting patients on half a dose if they have one suspect gene variant. And “the vast majority of patients will be able to start treatment without delays,” Daniel Hertz, a clinical pharmacologist from the University of Michigan, said at the January meeting.

Some hospitals began testing after patients died because of the deficiency, said Lindsay Murray, of Andover, Massachusetts, who has advocated for widespread testing since her mother was treated with capecitabine and died in 2021.

In some cases, Venook said, relatives of dead patients have sued hospitals, leading to settlements.

Kapoor said his brother — like many patients of non-European origin — had a gene variant that hasn’t been widely studied and isn’t included in most tests. But a full-gene scan would have detected it, Kapoor said, and such scans can also be done for a few hundred dollars.

The cancer network panel’s changed language is disappointing, he said, though “better than nothing.”

In video tributes to Zembruski-Ruple, her friends, colleagues, and clients remembered her as kind, helpful, and engaging. “JoEllen was beautiful both inside and out,” said Barbara McKeon, a former colleague at the MS Society. “She was funny, creative, had a great sense of style.”

“JoEllen had this balance of classy and playful misbehavior,” psychotherapist Anastatia Fabris said. “My beautiful, vibrant, funny, and loving friend JoEllen.”

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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Millions would lose Medicaid coverage. Millions would be left without health insurance. Signing up for health plans on the Affordable Care Act marketplaces would be harder and more expensive.

President Donald Trump’s domestic policy legislation, the One Big Beautiful Bill Act that cleared the House in May and now moves to the Senate, could also be called Obamacare Repeal Lite, its critics say. In addition to causing millions of Americans to lose their coverage under Medicaid, the health program for low-income and disabled people, the measure includes the most substantial rollback of the ACA since Trump’s Republican allies tried to pass legislation in 2017 that would have largely repealed President Barack Obama’s signature domestic accomplishment.

One difference today is that Republicans aren’t describing their legislation as a repeal of the ACA, after the 2017 effort cost them control of the House the following year. Instead, they say the bill would merely reduce “waste, fraud, and abuse” in Medicaid and other government health programs.

“In a way, this is their ACA repeal wish list without advertising it as Obamacare repeal,” said Philip Rocco, an associate professor of political science at Marquette University in Milwaukee and co-author of the book “Obamacare Wars: Federalism, State Politics, and the Affordable Care Act.”

The GOP, Rocco said, learned eight years ago that the “headline of Obamacare repeal is really bad politics.”

Democrats have tried to frame Trump’s One Big Beautiful Bill Act as an assault on Americans’ health care, just as they did with the 2017 legislation.

“They are essentially repealing parts of the Affordable Care Act,” Rep. Frank Pallone Jr. (D-N.J.) said as the House debated the measure in May. “This bill will destroy the health care system of this country.”

Nearly two-thirds of adults have a favorable view of the ACA, according to polling by KFF, a national health information nonprofit that includes KFF Health News.

In contrast, about half of people polled also say there are major problems with waste, fraud, and abuse in government health programs, including Medicaid, KFF found.

“We are not cutting Medicaid,” House Speaker Mike Johnson said May 25 on CNN’s “State of the Union,” describing the bill’s changes as affecting only immigrants living in the U.S. without authorization and “able-bodied workers” whom he claimed are on Medicaid but don’t work.

The program is “intended for the most vulnerable populations of Americans, which is pregnant women and young single mothers, the disabled, the elderly,” he said. “They are protected in what we’re doing because we’re preserving the resources for those who need it most.”

The 2025 legislation wouldn’t cut as deeply into health programs as the failed 2017 bill, which would have led to about 32 million Americans losing insurance coverage, the Congressional Budget Office estimated at the time. By contrast, the One Big Beautiful Bill Act, with provisions that affect Medicaid and ACA enrollees, would leave nearly 9 million more people without health insurance by 2034, according to the CBO.

That number rises to nearly 14 million if Congress doesn’t extend premium subsidies for Obamacare plans that were enhanced during the pandemic to help more people buy insurance on government marketplaces, the CBO says. Without congressional action, the more generous subsidies will expire at the end of the year and most ACA enrollees will see their premiums rise sharply.

The increased financial assistance led to a record 24 million people enrolled in ACA marketplace plans this year, and health insurance experts predict a large reduction without the enhanced subsidies.

Loss of those enhanced subsidies, coupled with other changes set in the House bill, will mean “the ACA will still be there, but it will be devastating for the program,” said Katie Keith, founding director of the Center for Health Policy and the Law at Georgetown University.   

Republicans argue that ACA subsidies are a separate issue from the One Big Beautiful Bill Act and accuse Democrats of conflating them.

The House-passed bill also makes a number of ACA changes, including shortening by a month the annual open enrollment period and eliminating policies from Joe Biden’s presidency that allowed many low-income people to sign up year-round.

New paperwork hurdles the House bill creates are also expected to result in people dropping or losing ACA coverage, according to the CBO.

For example, the bill would end most automatic reenrollment, which was used by more than 10 million people this year. Instead, most ACA enrollees would need to provide updated information, including on income and immigration status, to the federal and state ACA marketplaces every year, starting in August, well before open enrollment.

Studies show that additional administrative hurdles lead to people dropping coverage, said Sabrina Corlette, a research professor and co-director of the Center on Health Insurance Reforms at Georgetown University.

“Not only do people drop out of the process, but it tends to be healthier, younger, lower-income folks who drop out,” she said. “That’s dumb because they go uninsured. Also, it is bad for the insurance market.”

Supporters of the provision say it’s necessary to combat fraudulent enrollment by ensuring that ACA beneficiaries still want coverage every year or that they are not being enrolled without their permission by rogue sales agents. Most of the Medicaid coverage reductions in the bill, the CBO says, are due to new work requirements and directives for the 21 million adults added to the program since 2014 under an expansion authorized by the ACA.

One new requirement is that those beneficiaries prove their eligibility every six months, instead of once a year, the norm in most states.

That would add costs for states and probably lead to people who are still eligible falling off Medicaid, said Oregon Medicaid Director Emma Sandoe. Oregon has one of the most liberal continuous eligibility policies, allowing anyone age 6 or older to stay on for up to two years without reapplying.

Such policies help ensure people don’t fall off for paperwork reasons and reduce administrative burden for the state, Sandoe said. Requiring more frequent eligibility checks would “limit the ability of folks to get care and receive health services, and that is our primary goal,” Sandoe said.

The 2017 repeal effort was aimed at fulfilling Trump’s promises from his first presidential campaign. That’s not the case now. The health policy provisions of the House bill instead would help to offset the cost of extending about $4 trillion in tax cuts that skew toward wealthier Americans.

The Medicaid changes in the bill would reduce federal spending on the program by about $700 billion over 10 years. CBO has not yet issued an estimate of how much the ACA provisions would save.

Timothy McBride, a health economist at Washington University in St. Louis, said Republican efforts to make it harder for what they term “able-bodied” adults to get Medicaid is code for scaling back Obamacare.

The ACA’s Medicaid expansion has been adopted by 40 states and Washington, D.C. The House bill’s work requirement and added eligibility checks are intended to drive off Medicaid enrollees who Republicans believe never should have been on the program, McBride said. Congress approved the ACA in 2010 with no Republican votes.

Most adult Medicaid enrollees under 65 are already working, studies show. Imposing requirements that people prove they’re working, or that they’re exempt from having to work, to stay on Medicaid will lead to some people losing coverage simply because they don’t fill out paperwork, researchers say.

Manatt Health estimates that about 30% of people added to Medicaid through the ACA expansion would lose coverage, or about 7 million people, said Jocelyn Guyer, senior managing director of the consulting firm.

The bill also would make it harder for people enrolled under Medicaid expansions to get care, because it requires states to charge copayments of up to $35 for some specialist services for those with incomes above the federal poverty level, which is $15,650 for an individual in 2025.

Today, copayments are rare in Medicaid, and when states charge them, they’re typically nominal, usually under $10. Studies show cost sharing in Medicaid leads to worse access to care among beneficiaries.

Christopher Pope, a senior fellow with the conservative Manhattan Institute, acknowledged that some people will lose coverage but rejected the notion that the GOP bill amounts to a full-on assault on the ACA.

He questioned the coverage reductions forecast by the CBO, saying the agency often struggles to accurately predict how states will react to changes in law. He said that some states may make it easy for enrollees to satisfy new work requirements, reducing coverage losses.

By comparison, Pope said, the ACA repeal effort from Trump’s first term a decade ago would have ended the entire Medicaid expansion. “This bill does nothing to stop the top features of Obamacare,” Pope said.

But McBride said that while the number of people losing health insurance under the GOP bill is predicted to be less than the 2017 estimates, it would still eliminate about half the ACA’s coverage gains, which brought the U.S. uninsured rate to historical lows. “It would take us backwards,” he said.

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WINDOW ROCK, Ariz. — Navajo Nation leaders took turns talking with the U.S. government’s top health official as they hiked along a sandstone ridge overlooking their rural, high-desert town before the morning sun grew too hot.

Buu Nygren, president of the Navajo Nation, paused at the edge with Health and Human Services Secretary Robert F. Kennedy Jr. Below them, tribal government buildings, homes, and juniper trees dotted the tan and deep-red landscape.

Nygren said he wanted Kennedy to look at the capital for the nation of about 400,000 enrolled members. The tribal president pointed toward an antiquated health center that he hoped federal funding would help replace and described life for the thousands of locals without running water due to delayed government projects.

Nygren said Kennedy had already done a lot, primarily saving the Indian Health Service from a round of staffing cuts rippling through the federal government.

“When we started hearing about the layoffs and the freezes, you were the first one to stand up for Indian Country,” he told Kennedy, of his move to spare the federal agency charged with providing health care to Native Americans and Alaska Natives.

But Nygren and other Navajo leaders said cuts to federal health programs outside the Indian Health Service are hurting Native Americans.

“You’re disrupting real lives,” Cherilyn Yazzie, a Navajo council delegate, told KFF Health News as she described recent changes.

Kennedy has repeatedly promised to prioritize Native Americans’ health care. But Native Americans and health officials across tribal nations say those overtures are overshadowed by the collateral harm from massive cuts to federal health programs.

The sweeping reductions have resulted in cuts to funding directed toward or disproportionately relied on by Native Americans. Staffing cuts, tribal health leaders say, have led to missing data and poor communication.

The Indian Health Service provides free health care at its hospitals and clinics to Native Americans, who, as a group, face higher rates of chronic diseases and die younger than other populations. Those inequities are attributable to centuries of systemic discrimination. But many tribal members don’t live near an agency clinic or hospital. And those who do may face limited services, chronic underfunding, and staffing shortages. To work around those gaps, health organizations lean on other federally funded programs.

“There may be a misconception among some of the administration that Indian Country is only impacted by changes to the Indian Health Service,” said Liz Malerba, a tribal policy expert and citizen of the Mohegan Tribe. “That’s simply not true.”

Tribes have lost more than $6 million in grants from other HHS agencies, the National Indian Health Board wrote in a May letter to Kennedy.

Janet Alkire, chairperson of the Standing Rock Sioux Tribe in the Dakotas, said at a May 14 Senate committee hearing that those grants paid for community health workers, vaccinations, data modernization, and other public health efforts.

The government also canceled funding for programs it said violated President Donald Trump’s ban on “diversity, equity, and inclusion,” including one aimed at Native American youth interested in science and medicine and another that helps several tribes increase access to healthy food — something Kennedy has said he wants to prioritize.

Tribal health officials say slashed federal staffing has made it harder to get technical support and money for federally funded health projects they run.

The firings have cut or eliminated staff at programs related to preventing overdoses in tribal communities, using traditional food and medicine to fight chronic disease, and helping low-income people afford to heat and cool their homes through the Low Income Home Energy Program.

The Oglala Sioux Tribe is in South Dakota, where Native Americans who struggle to heat their homes have died of hypothermia. Through mid-May the tribe hadn’t been able to access its latest funding installment from the energy program, said John Long, the tribe’s chief of staff.

Abigail Echo-Hawk, director of the Urban Indian Health Institute at the Seattle Indian Health Board, said the government has sent her organization incomplete health data. That includes statistics about Native Americans at risk for suicide and substance use disorders, which the center uses to shape public health policy and programs.

“People are going to die because we don’t have access to the data,” Echo-Hawk said.

Her organization is also having trouble administering a $2.2 million federal grant, she said, because the agency handling the money fired staffers she worked with. The grant pays for public health initiatives such as smoking cessation and vaccinations.

“It is very confusing to say chronic disease prevention is the No. 1 priority and then to eradicate the support needed to address chronic disease prevention in Indian Country,” Echo-Hawk said.

HHS spokesperson Emily Hilliard said Kennedy aims to combat chronic diseases and improve well-being among Native Americans “through culturally relevant, community-driven solutions.”

Hilliard did not respond to questions about Kennedy’s specific plans for Native American health or concerns about existing and proposed funding and staffing changes.

As Kennedy hiked alongside Navajo Nation leaders, KFF Health News asked how he would improve and protect access to care for tribal communities amid rollbacks within his department.

“That’s exactly what I’m doing,” Kennedy responded. “Making sure that all the cuts do not affect these communities.”

Kennedy has said his focus on Native American health stems from personal and family experience, something he repeated to Navajo leadership. As an attorney, he worked with tribes on environmental health lawsuits. He also served as an editor at ICT, a major Native American news outlet.

The secretary said he was also influenced by his uncle, President John F. Kennedy, and his father, U.S. Attorney General Robert F. Kennedy, who were both assassinated when Robert F. Kennedy Jr. was a child.

“They thought that America would never live up to its moral authority and its role as an exemplary nation around the world if we didn’t first look back and remediate or mitigate the original sin of the American experience — the genocide of the Native people,” Kennedy said during his visit.

Some tribal leaders say the recent cuts, and the way the administration made them, violate treaties in which the U.S. promised to provide for the health and welfare of tribes in return for taking their land.

“We have not been consulted with meaningfully on any of these actions,” said Malerba, director of policy and legislative affairs for the United South and Eastern Tribes Sovereignty Protection Fund, which advocates for tribes from Texas to Maine.

Alkire said at the congressional hearing that many Native American health organizations sent letters to the health department asking for consultations but none has received a response.

Tribal consultation is legally required when federal agencies pursue changes that would have a significant impact on tribal nations.

“This is not just a moral question of what we owe Native people,” Sen. Brian Schatz (D-Hawaii) said at the hearing. “It is also a question of the law.”

Tribal leaders are worried about additional proposed changes, including funding cuts to the Indian Health Service and a reorganization of the federal health department.

Esther Lucero, president and CEO of the Seattle Indian Health Board, said the maneuvers remind her of the level of daily uncertainty she felt working through the covid-19 pandemic — only with fewer resources.

“Our ability to serve those who are desperately in need feels at risk,” Lucero said.

Among the most pressing concerns are congressional Republicans’ proposed cuts to Medicaid, the primary government health insurance program for people with low incomes or disabilities.

About 30% of Native American and Alaska Native people younger than 65 are enrolled in Medicaid, and the program helps keep Indian Health Service and other tribal health facilities afloat.

Native American adults would be exempt from Medicaid work requirements approved by House Republicans last month.

After Kennedy summited Window Rock with Navajo Nation leaders, the tribe held a prayer ceremony in which they blessed him in Diné Bizaad, the Navajo language. President Nygren stressed how meaningful it was for the country’s health secretary to walk alongside them. He also reminded Kennedy of the list of priorities they’d discussed. That included maintaining the federal low-income energy assistance program.

“We look forward to reestablishing and protecting some of the services that your department provides,” Nygren said.

As of mid-May, the Trump administration had proposed eliminating the energy program, which remains unstaffed.

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Despite years of patient complaints and quality-of-care concerns, Ballad Health — the nation’s largest state-sanctioned hospital monopoly — will now be held to a lower standard by the Tennessee government, and state data that holds the monopoly accountable will be kept from the public for two years.

Ballad is the only option for hospital care for most of the approximately 1.1 million people in a 29-county swath of Appalachia. Such a monopoly would normally be prohibited by federal law. But under deals negotiated with Tennessee and Virginia years ago, the monopoly is permitted if both states affirm each year that it is an overall benefit to the public.

However, according to a newly renegotiated agreement between Ballad and Tennessee, the monopoly can now be considered a “clear and convincing” benefit to the public with performance that would earn a “D” on most A-to-F grading scales.

And the monopoly can be allowed to continue even with a score that most would consider an “F.”

“It’s an extreme disservice to the people of northeast Tennessee and southwest Virginia,” said Dani Cook, who has organized protests against Ballad’s monopoly for years. “We shouldn’t have lowered the bar. We should be raising the bar.”

The Ballad monopoly, which encompasses 20 hospitals and straddles the border of Tennessee and Virginia, was created in 2018 after lawmakers in both states, in an effort to prevent hospital closures, waived federal antitrust laws so two rival health systems could merge. Although Ballad has largely succeeded at keeping its hospitals open, staffing shortages and patient complaints have left some residents wary, afraid, or unwilling to seek care at Ballad hospitals, according to an investigation by KFF Health News published last year.

In Tennessee, the Ballad monopoly is regulated through a 10-year Certificate of Public Advantage agreement, or COPA — now in its seventh year — that establishes the state’s goals and a scoring rubric for hospital performance. Tennessee Department of Health documents show Ballad has fallen short of about three-fourths of the state’s quality-of-care goals over the past four fiscal years. But the monopoly has been allowed to continue, at least in part, because the scoring rubric doesn’t prioritize quality of care, according to the documents.

Angie Odom, a county commissioner in Tennessee’s Carter County, where leaders have clashed with Ballad, said she has driven her 12-year-old daughter more than 100 miles to Knoxville to avoid surgery at a Ballad hospital.

After years of disappointment in Tennessee’s oversight of the monopoly, Odom said she was “not surprised” by Ballad’s new grading scale.

“They’ve made a way that they can fail and still pass,” she said.

Virginia regulates Ballad with a different agreement and scoring method, and its reviews generally track about one or two years behind Tennessee’s. Both states have found Ballad to be an overall benefit in every year they’ve released a decision.

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Neither Ballad Health nor the Tennessee Department of Health, which has the most direct oversight of the monopoly, answered questions submitted in writing about the renegotiated agreement. In an emailed statement, Molly Luton, a Ballad spokesperson, said the company’s quality of care has steadily improved in recent years, and she raised repeated complaints from the hospital system about KFF Health News’ reporting. The news organization has reviewed every complaint from Ballad and has never found a correction or clarification to be warranted in the coverage.

Tennessee Health Commissioner Ralph Alvarado, who has more than once described the regulation of Ballad Health as a matter of national importance, has declined or not responded to more than a dozen interview requests from KFF Health News to discuss the monopoly.

“Our effort and progress serve as a model for health care in Tennessee, the Appalachia Region, and the entire nation,” Alvarado said in a May news release about the monopoly, adding, “We do not take our role lightly as we remain committed to transparency in our COPA oversight.”

Tennessee’s revised agreement was negotiated behind closed doors for more than a year and announced to the public in early May. As part of that announcement, Tennessee said it wouldn’t score Ballad next year, to give the company time to adjust to the new scoring process.

Under that process, the minimum score Ballad needs to meet to show a “clear and convincing” public benefit has been lowered from 85 out of 100 to 70 out of 100. The new agreement also awards Ballad up to 20 points for providing Tennessee with data and records — for example, a report on patient satisfaction — regardless of the level of performance documented. The state can also raise or lower Ballad’s overall score by up to 5 points in light of “reputable information” that is not spelled out in the scoring rubric.

Therefore, Ballad can score as low as 65 out of 100, with nearly a third of that score awarded for merely giving information to the state, and still be found to be a “clear and convincing” benefit to the public, which is the highest finding Tennessee can bestow, according to the agreement. And Ballad could score as low as 55 out of 100 without the monopoly facing a risk of being broken up, according to the new agreement.

The agreement also increases how much of Ballad’s annual score is directly attributed to the quality of care provided in its hospitals, from 5% to 32%. But the agreement obscures how this will be measured.

Tennessee sets “baseline” goals for Ballad across dozens of quality-of-care issues — like infection rates and speed of emergency room care — and then tracks whether Ballad meets the goals. The new agreement resets these baselines to values that were not made public, leaving it unclear how much the goals for Ballad have changed. Health department spokesperson Dean Flener said the new baselines would not be disclosed until 2027.

Cook, the longtime leader of protests against Ballad, said she believes Tennessee is attempting to silence data-supported criticism until the final year of the 10-year COPA agreement, which ends in 2028.

By then, any outrage would be largely moot, she said.

“If you are going to wait until the last year to tell us the new measurements, why bother?” Cook said. “It is clear, without a shadow of a doubt, that the Tennessee Department of Health is putting the needs and concerns of a corporation above the health and well-being of people.”

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ST. PAUL, Minn. — High school senior Joshua Yang understands sacrifice. When he was midway through 10th grade, his mom survived a terrible car crash. But her body developed tremors, and she lost mobility. After countless appointments, doctors diagnosed her with Parkinson’s disease, saying it was likely triggered by brain injuries sustained in the wreck.

At 15, Yang, an aspiring baseball player and member of his school’s debate team, took on a new role: his mother’s caregiver.

Researchers estimate that Yang, now 18, counted among at least 5.4 million U.S. children who provide care to an adult in their home. As state officials eye federal Medicaid funding cuts that could drastically reduce home care services for those who are disabled or have chronic health conditions, many predict that number will rise.

That’s bad news for kids: Studies show that when young people take on care for adults with medical conditions, their health and academic outcomes decline. At the same time, their loved ones receive untrained care.

“It all fell to me,” said Yang, whose sisters were 9 and 10 at the time of their mom’s accident, and whose stepdad worked nights. His grades fell and he quit after-school activities, he said, unable to spare the time.

Early on, Yang found reprieve from a personal care nurse who gave them supplies, such as adult diapers, and advice on items to purchase, such as a chair for the shower. And for about a year, Yang was able to work for a personal care agency and earn $1,000 a month caring for his mom — money that went toward her medication and family needs.

But at the beginning of 11th grade, a change to his mom’s insurance ended her personal care benefit, sending him into a runaround with his county’s Medicaid office in Minnesota. “For a solid month I was on my phone, on hold, in the back of the class, waiting for the ‘hello,’” he said. “I’d be in third period, saying, ‘Mr. Stepan, can I step out?’”

A report published in May by the U.S. Government Accountability Office reminded states that National Family Caregiver Support Program grants can be used to assist caregivers under 18. However, the future of those grants remains unclear: They are funded through the Older Americans Act, which is awaiting reauthorization; and the Administration for Community Living, which oversees the grants, was nearly halved in April as part of the reorganization of the Department of Health and Human Services under President Donald Trump.

Additionally, if Congress approves proposed cuts to Medicaid, one of the first casualties likely will be states’ home- and community-based service programs that provide critical financial relief to family caregivers, said Andrew Olenski, an economist at Lehigh University specializing in long-term health care.

Such programs, which differ by state but are paid for with federal dollars, are designed to ensure that Medicaid-eligible people in need of long-term care can continue living at home by covering in-home personal and nursing care. In 2021, they served almost 5% of all Medicaid participants, costing about $158 billion.

By law, Medicaid is required to cover necessary long-term care in a nursing home setting but not all home or community care programs. So, if states are forced to make cuts, those programs are vulnerable to being scaled back or eliminated.

If an aide who makes daily home visits, for example, is no longer an option, family caregivers could step in, Olenski said. But he pointed out that not all patients have adult children to care for them, and not all adult children can afford to step away from the workforce. And that could put more pressure on any kids at home.

“These things tend to roll downhill,” Olenski said.

Some studies show benefits to young people who step into caregiving roles, such as more self-confidence and improved family relationships. Yang said he feels more on top of things than his peers: “I have friends worrying about how to land a job interview, while I’ve already applied to seven or eight other jobs.”

But for many, the cost is steep. Young caregivers report more depression, anxiety, and stress than their peers. Their physical health tends to be worse, too, related to diet and lack of attention to their own care. And caregiving often becomes a significant drag on their education: A large study found that 15- to 18-year-old caregivers spent, on average, 42 fewer minutes per day on educational activities and 31 fewer minutes in class than their peers.

Schools in several states are taking notice. In Colorado, a statewide survey recently included its first question about caregiving and found that more than 12% of high schoolers provide care for someone in their home who is chronically ill, elderly, or disabled.

Rhode Island’s education department now requires every middle and high school to craft a policy to support caregiving students after a study published in 2023 found 29% of middle and high school students report caring for a younger or older family member for part of the day, and 7% said the role takes up most of their day. Rates were higher for Hispanic, Asian, and Black students than their white peers.

The results floored Lindsey Tavares, principal of Apprenticeship Exploration School, a charter high school in Cranston. Just under half her students identified as caregivers, she said. That awareness has changed conversations when students’ grades slip or the kids stop showing up on time or at all.

“We know now that this is a question we should be asking directly,” she said.

Students have shared stories of staying home to care for an ill sibling when a parent needs to work, missing school to translate doctors’ appointments, or working nights to pitch in financially, she said. Tavares and her team see it as their job to find an approach to help students persist. That might look like connecting the student to resources outside the school, offering mental health support, or working with a teacher to keep a student caught up.

“We can’t always solve their problem,” Tavares said. “But we can be really realistic about how we can get that student to finish high school.”

Rhode Island officials believe their state is the first to officially support caregiving students — work they’re doing in partnership with the Florida-based American Association for Caregiving Youth. In 2006, the association formed the Caregiving Youth Project, which works with schools to provide eligible students with peer group support, medical care training, overnight summer camp, and specialists tuned in to each student’s specific needs. This school year, more than 700 middle and high school students took part.

“For kids, it’s important for them to know they’re not alone,” said Julia Belkowitz, a pediatrician and an associate professor at the University of Miami who has studied student caregivers. “And for the rest of us, it’s important, as we consider policies, to know who’s really doing this work.”

In St. Paul, Joshua Yang had hoped to study civil engineering at the University of Minnesota, but decided instead to attend community college in the fall, where his schedule will make it simpler to continue living at home and caring for his mom.

But he sees some respite on the horizon as his sisters, now 12 and 13, prepare to take on a greater share of the caregiving. They’re “actual people” now with personalities and a sense of responsibility, he said with a laugh.

“It’s like, we all know that we’re the most meaningful people in our mom’s life, so let’s all help out,” he 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.

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Céline Gounder, KFF Health News’ editor-at-large for public health, discussed covid-19 vaccines and prostate cancer on WAMU’s “1A” on May 27.

• Click here to hear Gounder on “1A.”

Senior correspondent Sarah Jane Tribble discussed how internet dead zones deepen chronic health issues in rural communities on The Commonwealth Fund’s “The Dose” on May 23.

• Click here to hear Tribble on “The Dose.”
• Read Tribble’s “Dead Zone” series.

Rural editor and correspondent Tony Leys discussed how Medicaid cuts affect hospital mental health units on Iowa Public Radio’s “River to River” on May 23.

• Click here to hear Leys on “River to River.”
• Read Leys’ “Medicaid Payments Barely Keep Hospital Mental Health Units Afloat. Federal Cuts Could Sink Them.”

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

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The Trump administration’s anti-regulatory approach and cost-cutting moves risk unraveling a critical system of checks and balances that helps ensure the safety of the U.S. food supply, industry experts told KFF Health News. 

An E. coli outbreak that occurred late last year — for which the investigation was concluded in February — signals how, with the FDA changes, more people could get sick with foodborne illnesses as companies and growers face less regulatory oversight and fewer consequences for selling tainted food products, according to interviews with consumer advocates, researchers, and former employees at the FDA and U.S. Department of Agriculture. 

In addition, the administration withdrew a proposed regulation to reduce the presence of salmonella in raw poultry, a plan that could have saved more than $13 million annually by preventing roughly 3,000 illnesses. It is also disbanding a Department of Justice unit that pursues civil and criminal actions against companies that sell contaminated food and is reassigning its attorneys, according to a former FDA official, a publicly posted memo from the head of the department’s criminal division, and a white paper by the law firm Gibson Dunn. 

“It’s all about destruction and not about efficiency,” said Siobhan DeLancey, who worked in the agency’s Office of Foods and Veterinary Medicine for more than 20 years before being laid off in April. “We’re going to see the effects for years. It will cost lives.” 

Officials from the Department of Health and Human Services did not comment on the record for this article but have maintained that food safety is a priority. 

Staffing cuts mean delays in publicizing deadly outbreaks, said Susan Mayne, an adjunct professor at the Yale School of Public Health who retired from the FDA in 2023. DeLancey said new requirements from the Trump administration for reviewing agency announcements became so arduous that it took weeks to get approval for alerts that should have been going out much sooner. 

The November 2024 outbreak caused by E. coli bacteria in lettuce sickened nearly 90 people and killed one person. But after the investigation was completed under the Trump administration, the FDA redacted any information identifying the grower or processor. The FDA said in its February internal summary that the grower wasn’t named because no product remained on the market. 

The information is still important because it can prevent further cases, pressure growers to improve sanitation, and identify repeat offenders, said Bill Marler, a Seattle lawyer who specializes in food-safety litigation. 

“The whole ‘Make America Healthy Again,’ the focus on taking food color dyes out of cereal?” said Chris George, of Avon, Indiana, whose son was hospitalized in the outbreak. “How about we take E. coli out of our lettuce, so it doesn’t kill our kids?”

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A principios de este año, cuando el presidente Donald Trump comenzaba a remodelar el gobierno, Michael, un médico de emergencias nacido, criado y formado en Estados Unidos, hizo las maletas y se marchó con su familia.

Michael trabaja ahora en un pequeño hospital de un pueblo de Canadá. KFF Health News y NPR le han concedido el anonimato por temor a que pueda sufrir represalias por parte de la administración Trump si regresa a Estados Unidos.

Afirma que se siente culpable por no haberse quedado para resistir la agenda de Trump, pero está convencido de su decisión de marcharse. Dice que una gran parte del país se ha acostumbrado a un ambiente de violencia y crueldad.

“Parte de ser médico tiene que ver con el afecto hacia las personas que se encuentran en una situación de mayor debilidad”, afirmó Michael. “Creo que en estos momentos nuestro país ha retrocedido y pisotea a las personas débiles y vulnerables”.

Michael forma parte de una nueva ola de médicos que ha decidido abandonar Estados Unidos para escapar de la administración Trump.

En los meses transcurridos desde que Trump fue reelegido y regresó a la Casa Blanca, los médicos estadounidenses han mostrado un interés creciente por obtener la licencia en Canadá, donde ya se ha autorizado a ejercer a un número mayor de lo habitual, según funcionarios canadienses encargados de la concesión de licencias y empresas de contratación.

El Consejo Médico de Canadá afirmó en un comunicado por correo electrónico que el número de médicos estadounidenses que han creado cuentas en physiciansapply.ca, que suele ser el “primer paso” para obtener la licencia en Canadá, ha aumentado más del 750% en los últimos siete meses en comparación con el mismo período del año pasado, pasando de 71 solicitantes a 615.

Por otra parte, las organizaciones de concesión de licencias médicas de las provincias más pobladas de Canadá informaron de un aumento de los estadounidenses que solicitan o reciben licencias canadienses, y algunos de esos médicos revelaron que se mudaban específicamente por Trump.

“Los médicos con los que hablamos se avergüenzan de decir que son estadounidenses”, dijo John Philpott, CEO de CanAm Physician Recruiting, que recluta médicos para Canadá. “Lo dicen nada más llegar: ‘Tengo que irme de este país. Ya no es lo que era’”.

Canadá, que tiene un sistema de salud universal financiado con fondos públicos, ha sido durante mucho tiempo una opción para los médicos formados en Estados Unidos que buscan una alternativa al sistema de salud estadounidense.

Aunque antes era más difícil para los médicos estadounidenses ejercer en Canadá debido a las diferencias en los estándares de formación médica, las provincias canadienses han relajado algunas normas para la concesión de licencias en los últimos años y algunas están agilizando el otorgamiento de licencias a los médicos formados en Estados Unidos.

En cuestión de meses, la administración Trump ha puesto en peligro la economía con su política de aranceles, ha ignorando órdenes judiciales y el debido proceso, y ha amenazado la soberanía de los aliados de Estados Unidos, incluido Canadá.

La administración también ha tomado medidas que pueden inquietar específicamente a los médicos, como nombrar a Robert F. Kennedy Jr. para dirigir las agencias federales de salud, desviar fondos destinados a la preparación para pandemias, desalentar la atención de la salud para los procedimientos de afirmación de género, demonizar el flúor y apoyar recortes profundos a Medicaid.

La administración Trump no ha querido hacer ningún comentario para este artículo. Cuando se le pidió que respondiera a la fuga de médicos de Estados Unidos a Canadá, el vocero de la Casa Blanca, Kush Desai, preguntó si KFF Health News conocía el número exacto de médicos y su “estatus de ciudadanía”, y luego no hizo ningún comentario más. KFF Health News no tenía ni proporcionó esa información.

Philpott, que fundó CanAm Physician Recruiting en la década de 1990, dijo que el movimiento transfronterizo de médicos estadounidenses y canadienses ha fluctuado durante décadas en respuesta a las circunstancias políticas y económicas, pero que el interés en Canadá nunca había sido tan fuerte como ahora.

Philpott afirmó que CanAm registró un aumento del 65% en el número de médicos estadounidenses que buscaban trabajo en Canadá entre enero y abril, y que la empresa estuvo recibiendo hasta 15 solicitudes de médicos estadounidenses al día.

Rohini Patel, reclutadora de CanAm y médica, dijo que algunos están dispuestos a aceptar salaries más bajos para poder mudarse rápidamente.

“Están listos para mudarse a Canadá mañana mismo”, afirmó. “No les preocupa cuál será su salario”.

El Colegio de Médicos y Cirujanos de Ontario, que se encarga de la concesión de licencias en la provincia más poblada de Canadá, dijo en un comunicado que registró a 116 médicos formados en Estados Unidos en el primer trimestre de 2025, lo que supone un aumento de al menos 50% con respecto a los dos trimestres anteriores.

British Columbia, otra provincia muy poblada, experimentó un aumento de las solicitudes de licencia de médicos formados en Estados Unidos después del día de las elecciones, según un comunicado enviado por correo electrónico del Colegio de Médicos y Cirujanos de British Columbia. El comunicado también indicaba que la organización había concedido la licencia a 28 médicos de este tipo en el año fiscal que finalizó en febrero, el triple que el año anterior.

El Colegio de Médicos de Quebec afirmó que las solicitudes de médicos formados en Estados Unidos han aumentado, al igual que el número de médicos canadienses que regresan de Estados Unidos para ejercer en la provincia, pero no proporcionó datos concretos. En un comunicado, la organización afirmó que algunos solicitantes estaban tratando de obtener permiso para ejercer en Canadá “específicamente debido a la actual administración presidencial”.

Michael, el médico que se mudó a Canadá este año, dijo que llevaba mucho tiempo temiendo lo que describió como una escalada de la retórica política de derecha y la violencia armada sin control en Estados Unidos, de esta última fue testigo directo durante una década trabajando en salas de emergencias.

Michael contó que empezó a plantearse la mudanza cuando Trump se presentó a la reelección en 2020. Su punto de inflexión llegó el 6 de enero de 2021, cuando una violenta turba de seguidores de Trump asaltó el Capitolio de Estados Unidos en un intento de impedir la certificación de la elección de Joe Biden como presidente.

“El discurso civil se estaba desmoronando”, afirmó. “Tuve una conversación con mi familia sobre cómo Biden iba a ser un presidente de un solo mandato y cómo seguíamos avanzando hacia una radicalización cada vez mayor hacia la derecha y la aceptación del vigilantismo (donde las personas se toman la justicia por su mano)”.

Luego, Michael tardó aproximadamente un año en obtener la licencia en Canadá, y aún más en concretar su trabajo y mudarse, contó. Aunque el proceso para obtener la licencia “no fue difícil”, según él, requirió obtener documentos certificados de su facultad de medicina y de su programa de residencia.

“El proceso no fue más difícil que obtener la primera licencia en Estados Unidos, que también es muy burocrático”, señaló Michael. “La diferencia es que creo que la mayoría de las personas que ejercen en Estados Unidos están tan cansadas de los trámites administrativos que no quieren volver a pasar por ese proceso”.

Michael dijo que ahora recibe casi a diario correos electrónicos o mensajes de texto de colegas que buscan asesoramiento para mudarse a Canadá.

Este deseo de marcharse también ha llamado la atención de Hippocratic Adventures, una pequeña empresa que ayuda a los médicos estadounidenses a ejercer la medicina en otros países.

La empresa fue cofundada por Ashwini Bapat, una doctora formada en Yale que se mudó a Portugal en 2020, en parte porque “le aterrorizaba que Trump volviera a ganar”. Durante años, Hippocratic Adventures atendió a médicos con espíritu viajero, guiándolos a través de la burocracia para obtener licencias en otros países o realizar telemedicina a distancia, explicó Bapat.

Pero después de la reelección de Trump, los clientes ya no buscaban grandes viajes por todo el mundo. Ahora buscan la salida de emergencia más cercana, según Bapat.

“Antes se trataba de la aventura”, explicó Bapat. “Pero el mayor aumento que vimos, sin duda alguna, fue cuando Trump ganó la reelección en noviembre. Y luego, el día de la toma de posesión. Y básicamente todos los días desde entonces”.

Al menos una provincia canadiense se está promocionando activamente entre los médicos estadounidenses.

Doctors Manitoba, que representa a los médicos de esta provincia rural que sufre una de las peores escaseces de médicos de Canadá, lanzó una campaña de reclutamiento tras las elecciones para capitalizar el rechazo a Trump y al auge de la política de extrema derecha en Estados Unidos.

La campaña se centra en Florida y Dakota del Norte y del Sur, y anuncia como “cero interferencias políticas en la relación médico-paciente”.

Alison Carleton, médica de familia que se mudó de Iowa a Manitoba en 2017, dijo que se marchó para escapar de la rutina diaria del sistema de salud estadounidense, orientado al lucro, y porque le horrorizó que Trump fuera elegido por primera vez.

Carleton dijo que ahora dirige una clínica en un pequeño pueblo con poco estrés, menos papeleo y sin miedo a que sus pacientes se vean ahogados por las deudas médicas.

El año pasado renunció a su ciudadanía estadounidense.

“La gente que conozco me dice: ‘Te fuiste justo a tiempo’”, afirmó Carleton. “Yo les respondo: ‘Lo sé. ¿Cuándo te vas a mudar tú?’”.

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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HHS and Comstar, LLC reached a settlement to resolve HIPAA violations from a ransomware breach that affected 585,621 individuals.

Earlier this year, as President Donald Trump was beginning to reshape the American government, Michael, an emergency room doctor who was born, raised, and trained in the United States, packed up his family and got out.

Michael now works in a small-town hospital in Canada. KFF Health News and NPR granted him anonymity because of fears he might face reprisal from the Trump administration if he returns to the U.S. He said he feels some guilt that he did not stay to resist the Trump agenda but is assured in his decision to leave. Too much of America has simply grown too comfortable with violence and cruelty, he said.

“Part of being a physician is being kind to people who are in their weakest place,” Michael said. “And I feel like our country is devolving to really step on people who are weak and vulnerable.”

Michael is among a new wave of doctors who are leaving the United States to escape the Trump administration. In the months since Trump was reelected and returned to the White House, American doctors have shown skyrocketing interest in becoming licensed in Canada, where dozens more than normal have already been cleared to practice, according to Canadian licensing officials and recruiting businesses.

The Medical Council of Canada said in an email statement that the number of American doctors creating accounts on physiciansapply.ca, which is “typically the first step” to being licensed in Canada, has increased more than 750% over the past seven months compared with the same time period last year — from 71 applicants to 615. Separately, medical licensing organizations in Canada’s most populous provinces reported a rise in Americans either applying for or receiving Canadian licenses, with at least some doctors disclosing they were moving specifically because of Trump.

“The doctors that we are talking to are embarrassed to say they’re Americans,” said John Philpott, CEO of CanAm Physician Recruiting, which recruits doctors into Canada. “They state that right out of the gate: ‘I have to leave this country. It is not what it used to be.’”

Canada, which has universal publicly funded health care, has long been an option for U.S.-trained doctors seeking an alternative to the American health care system. While it was once more difficult for American doctors to practice in Canada due to discrepancies in medical education standards, Canadian provinces have relaxed some licensing regulations in recent years, and some are expediting licensing for U.S.-trained physicians.

In mere months, the Trump administration has jeopardized the economy with tariffs, ignored court orders and due process, and threatened the sovereignty of U.S. allies, including Canada. The administration has also taken steps that may unnerve doctors specifically, including appointing Robert F. Kennedy Jr. to lead federal health agencies, shifting money away from pandemic preparedness, discouraging gender-affirming care, demonizing fluoride, and supporting deep cuts to Medicaid.

The Trump administration did not provide any comment for this article. When asked to respond to doctors’ leaving the U.S. for Canada, White House spokesperson Kush Desai asked whether KFF Health News knew the precise number of doctors and their “citizenship status,” then provided no further comment. KFF Health News did not have or provide this information.

Philpott, who founded CanAm Physician Recruiting in the 1990s, said the cross-border movement of American and Canadian doctors has for decades ebbed and flowed in reaction to political and economic fluctuations, but that the pull toward Canada has never been as strong as now.

Philpott said CanAm had seen a 65% increase in American doctors looking for Canadian jobs from January to April, and that the company has been contacted by as many as 15 American doctors a day.

Rohini Patel, a CanAm recruiter and doctor, said some consider pay cuts to move quickly.

“They’re ready to move to Canada tomorrow,” she said. “They are not concerned about what their income is.”

The College of Physicians and Surgeons of Ontario, which handles licensing in Canada’s most populous province, said in a statement that it registered 116 U.S.-trained doctors in the first quarter of 2025 — an increase of at least 50% over the prior two quarters. Ontario also received license applications from about 260 U.S.-trained doctors in the first quarter of this year, the organization said.

British Columbia, another populous province, saw a surge of licensure applications from U.S.-trained doctors after Election Day, according to an email statement from the College of Physicians and Surgeons of British Columbia. The statement also said the organization licensed 28 such doctors in the fiscal year that ended in February — triple the total of the prior year.

Quebec’s College of Physicians said applications from U.S.-trained doctors have increased, along with the number of Canadian doctors returning from America to practice within the province, but it did not provide specifics. In a statement, the organization said some applicants were trying to get permitted to practice in Canada “specifically because of the actual presidential administration.”

Michael, the physician who moved to Canada this year, said he had long been wary of what he described as escalating right-ring political rhetoric and unchecked gun violence in the United States, the latter of which he witnessed firsthand during a decade working in American emergency rooms.

Michael said he began considering the move as Trump was running for reelection in 2020. His breaking point came on Jan. 6, 2021, when a violent mob of Trump supporters besieged the U.S. Capitol in an attempt to stop the certification of the election of Joe Biden as president.

“Civil discourse was falling apart,” he said. “I had a conversation with my family about how Biden was going to be a one-term president and we were still headed in a direction of being increasingly radicalized toward the right and an acceptance of vigilantism.”

It then took about a year for Michael to become licensed in Canada, then longer for him to finalize his job and move, he said. While the licensing process was “not difficult,” he said, it did require him to obtain certified documents from his medical school and residency program.

“The process wasn’t any harder than getting your first license in the United States, which is also very bureaucratic,” Michael said. “The difference is, I think most people practicing in the U.S. have got so much administrative fatigue that they don’t want to go through that process again.”

Michael said he now receives near-daily emails or texts from American doctors who are seeking advice about moving to Canada.

This desire to leave has also been striking to Hippocratic Adventures, a small business that helps American doctors practice medicine in other countries.

The company was co-founded by Ashwini Bapat, a Yale-educated doctor who moved to Portugal in 2020 in part because she was “terrified that Trump would win again.” For years, Hippocratic Adventures catered to physicians with wanderlust, guiding them through the bureaucracy of getting licensed in foreign nations or conducting telemedicine from afar, Bapat said.

But after Trump was reelected, customers were no longer seeking grand travels across the globe, Bapat said. Now they were searching for the nearest emergency exit, she said.

“Previously it had been about adventure,” Bapat said. “But the biggest spike that we saw, for sure, hands down, was when Trump won reelection in November. And then Inauguration Day. And basically every single day since then.”

At least one Canadian province is actively marketing itself to American doctors.

Doctors Manitoba, which represents physicians in the rural province that struggles with one of Canada’s worst doctor shortages, launched a recruiting campaign after the election to capitalize on Trump and the rise of far-right politics in the U.S.

The campaign focuses on Florida and North and South Dakota and advertises “zero political interference in physician patient relationship” as a selling point.

Alison Carleton, a family medicine doctor who moved from Iowa to Manitoba in 2017, said she left to escape the daily grind of America’s for-profit health care system and because she was appalled that Trump was elected the first time.

Carleton said she now runs a small-town clinic with low stress, less paperwork, and no fear of burying her patients in medical debt.

She dropped her American citizenship last year.

“People I know have said, ‘You left just in time,’” Carleton said. “I tell people, ‘I know. When are you going to move?’”

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

USE OUR CONTENT

This story can be republished for free (details).