Ali Foley Shenk still remembers the panic when her 10-year-old son, Dean, finished a 20-ounce box of raisins in the seconds the cupboard was left unlocked. They rushed to the emergency room, fearing a dangerous bowel impaction.

The irony stung: When Dean was born, he was so weak and floppy he survived only with feeding tubes because he couldn’t suck or swallow. He was diagnosed as a baby with Prader-Willi syndrome — a rare disorder sparked by a genetic abnormality. He continued to be disinterested in food for years. But doctors warned that as Dean grew, his hunger would eventually become so uncontrollable he could gain dangerous amounts of weight and even eat until his stomach ruptured.

“It’s crazy,” said Foley Shenk, who lives in Richmond, Virginia. “All of a sudden, they flip.”

Prader-Willi syndrome affects up to 20,000 people in the U.S. The most striking symptom is its most life-threatening: an insatiable hunger known as hyperphagia that prompts caregivers to padlock cupboards and fridges, chain garbage cans, and install cameras. Until recently, the only treatment was growth hormone therapy to help patients stay leaner and grow taller, but it didn’t address appetite.

In March, the Food and Drug Administration approved Vykat XR, an extended-release version of the existing drug diazoxide choline, which eases the relentless hunger and may offer insights into the biology of extreme appetite and binge eating. This breakthrough for these patients comes as other drugs are revolutionizing how doctors treat obesity, which affects more than 40% of American adults. GLP-1 agonist medications Ozempic, Wegovy, and others also are delivering dramatic results for millions.

But what’s becoming clear is that obesity isn’t one disease — it’s many, said Jack Yanovski, a senior obesity researcher at the National Institutes of Health, who co-authored some of the Vykat XR studies. Researchers are learning that obesity’s drivers can be environmental, familial, or genetic. “It only makes sense that it’s complex to treat,” Yanovski said.

Obesity medicine is likely heading the way of treatments for high blood pressure or diabetes, with three to five effective options for different types of patients. For example, up to 15% of patients in the GLP-1 trials didn’t respond to those drugs, and at least one study found the medications didn’t significantly help Prader-Willi patients.

Yet, researchers say, efforts to understand how to treat obesity’s many causes and pathways are now in question as the Trump administration is dismantling the nation’s infrastructure for medical discovery.

While Health and Human Services Secretary Robert F. Kennedy Jr. promotes a “Make America Healthy Again” agenda centered on diet and lifestyle, federal funding for health research is being slashed, including some grants that support the study of obesity. University labs face cuts, FDA staffers are being laid off en masse, and rare disease researchers fear the ripple effects across all medical advances. Even with biotech partnerships — such as the work that led to Vykat XR — progress depends on NIH-funded labs and university researchers.

“That whole thing is likely to get disrupted now,” said Theresa Strong, research director for the Foundation for Prader-Willi Research.

HHS spokesperson Andrew Nixon said in a statement that no NIH awards for Prader-Willi syndrome research have been cut. “We remain committed to supporting critical research into rare diseases and genetic conditions,” he said.

But Strong said that already some of the contacts at the FDA she’d spent nearly 15 years educating about the disorder have left the agency. She’s heard that some research groups are considering moving their labs to Europe.

Early progress in hunger and obesity research is transforming the life of Dean Shenk. During the trial for Vykat XR, his anxiety about food eased so much that his parents began leaving cupboards unlocked.

Jennifer Miller, a pediatric endocrinologist at the University of Florida who co-led the Vykat XR trials, treats around 600 Prader-Willi patients, including Dean. She said the impact she’s seen is life-changing. Since the drug trial started in 2018, some of her adult patients have begun living independently, getting into college, and starting jobs — milestones that once felt impossible. “It opens up their world in so many ways.”

Over 26 years in practice, she’s also seen just how severely the disease hurts patients. One patient ate a four-pound bag of dehydrated potato flakes; another ingested all 10 frozen pizzas from a Costco pack; some ate pet food. Others have climbed out of windows, dived into dumpsters, even died after being hit by a car while running away from home in search of food.

Low muscle tone, developmental delays, cognitive disabilities, and behavioral challenges are also common features of the disorder.

Dean attends a special education program, his mother said. He also has narcolepsy and cataplexy — a sudden loss of muscle control triggered by strong emotions. His once-regular meltdowns and skin-picking, which led to deep, infected lesions, were tied to anxiety over his obsessive, almost painful urge to eat.

In the trial, though, his hyperphagia was under control, according to Miller and Dean’s mother. His lean muscle mass quadrupled, his body fat went down, and his bone mineral density increased. Even the skin-picking stopped, Foley Shenk said.

Vykat XR is not a cure for the disease. Instead, it calms overactive neurons in the hypothalamus that release neuropeptide Y — one of the body’s strongest hunger signals. “In most people, if you stop secreting NPY, hunger goes away,” said Anish Bhatnagar, CEO of Soleno Therapeutics, which makes the medication, the company’s first drug. “In Prader-Willi, that off switch doesn’t exist. It’s literally your brain telling you, ‘You’re starving,’ as you eat.”

GLP-1 drugs, by contrast, mimic a gut hormone that helps people feel full by slowing digestion and signaling satiety to the brain.

Vykat XR’s possible side effects include high blood sugar, increased hair growth, and fluid retention or swelling, but those are trade-offs that many patients are willing to make to get some relief from the most devastating symptom of the condition.

Still, the drug’s average price of $466,200 a year is staggering even for rare-disease treatments. Soleno said in a statement it expects broad coverage from both private and public insurers and that the copayments will be “minimal.” Until more insurers start reimbursing the cost, the company is providing the drug free of charge to trial participants.

Soleno’s stock soared 40% after the FDA nod and has held fairly steady since, with the company valued at nearly $4 billion as of early June.

While Vykat XR may be limited in whom it can help with appetite control, obesity researchers are hoping the research behind it may help them decode the complexity of hunger and identify other treatment options.

“Understanding how more targeted therapies work in rare genetic obesity helps us better understand the brain pathways behind appetite,” said Jesse Richards, an internal medicine physician and the director of obesity medicine at the University of Oklahoma-Tulsa’s School of Community Medicine.

That future may already be taking shape. For Prader-Willi, two other notable phase 3 clinical trials are underway, led by Acadia Pharmaceuticals and Aardvark Therapeutics, each targeting different pathways. Meanwhile, hundreds of trials for general obesity are currently recruiting despite the uncertainties in U.S. medical research funding.

That brings more hope to patients like Dean. Nearly six years after starting treatment, the now-16-year-old is a calmer, happier kid, his mom said. He’s more social, has friends, and can focus better in school. With the impulse to overeat no longer dominating his every thought, he has space for other interests — Star Wars, American Ninja Warrior, and a healthy appreciation for avocados among them.

“Before the drug, it just felt like a dead end. My child was miserable,” Foley Shenk said. “Now, we have our son back.”

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Weapons dubbed “less lethal” are once again being used in Los Angeles, this time against people protesting the Trump administration’s immigration raids. 

During the 2020 protests sparked by the police killing of George Floyd, KFF Health News and USA Today documented the harm that rubber bullets and other “less lethal” projectiles can cause. Here’s what we found. 

This slide presentation first appeared on KFF Health News’ Instagram account. If you enjoyed this story from the KFF Health News social team, follow us on Instagram @kffhealthnews. 

Related Investigation

• Fractured Skulls, Lost Eyes: Police Often Break Own Rules Using ‘Rubber Bullets’ Jun 19, 2020
• Less-Lethal Weapons Blind, Maim and Kill. Victims Say Enough Is Enough. Jul 24, 2020
• Cities and States Look to Crack Down on ‘Less-Lethal’ Weapons Used by Police Sep 3, 2020

More from this series

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Benjamin Han, geriatra y especialista en adicciones de la Universidad de California-San Diego, cuenta a sus estudiantes la historia de una paciente de 76 años que, como muchas personas mayores, sufría de insomnio.

“Tenía problemas para conciliar el sueño y se despertaba en mitad de la noche”, dijo. “Así que su hija le trajo unas pastillas masticables para dormir”, eranunos caramelos de cannabis.

“Probó una gomita después de cenar y esperó media hora”, explicó Han.

Al no sentir ningún efecto, masticó otra, y luego otra más: cuatro a lo largo de varias horas.

Han aconseja a los pacientes que prueban el cannabis “empezar con una dosis baja y avanzar poco a poco”, comenzando con productos que contengan solo 1 o 2,5 miligramos de tetrahidrocannabinol, o THC, el ingrediente psicoactivo presente en muchos productos de cannabis. Sin embargo, cada una de las cuatro gomitas que tomó esta paciente contenía 10 miligramos.

La mujer comenzó a experimentar ansiedad intensa y palpitaciones. Una persona joven podría haber ignorado estos síntomas, pero esta paciente tenía hipertensión y fibrilación auricular, una forma de arritmia cardíaca. Asustada, fue una sala de emergencias.

Las pruebas de laboratorio y un estudio cardíaco determinaron que la mujer no estaba sufriendo un infarto, y el personal la envió a casa. Su único síntoma persistente era la vergüenza, dijo Han.

Pero ¿y si se hubiera mareado o aturdido y se hubiera lesionado en una caída? Comentó que ha tenido pacientes lesionados al caerse o al conducir después de consumir cannabis. ¿Y si el cannabis hubiera interactuado con los medicamentos recetados que tomaba?

“Como geriatra, me da que pensar”, dijo Han. “Nuestros cerebros se vuelven más sensibles a las sustancias psicoactivas a medida que envejecemos”.

Treinta y nueve estados y el Distrito de Columbia permiten ahora el consumo de cannabis con fines médicos, y en 24 de esos estados, y en el distrito, el consumo recreativo también es legal. A medida que aumenta el consumo entre los adultos mayores, “los beneficios aún no están claros”, dijo Han. “Pero estamos viendo más evidencia de posibles daños”.

Una oleada de investigaciones recientes enfatizan preocupaciones para los consumidores mayores: registran aumentos en visitas a emergencias y hospitalizaciones relacionadas con el cannabis, y un estudio canadiense ha encontrado una asociación entre este tipo de atención aguda y la demencia posterior.

Las personas mayores son más propensas que las jóvenes a probar el cannabis por razones terapéuticas: para aliviar el dolor crónico, el insomnio o problemas de salud mental, aunque la evidencia de su eficacia para tratar de estas afecciones sigue siendo escasa, según expertos.

En un análisis de datos de una encuesta nacional publicado el 2 de junio en la revista médica JAMA, Han y sus colegas informaron que el consumo actual de cannabis (definido como el consumo durante el mes anterior) había aumentado de 4,8% en 2021 a 7% en 2023 entre los adultos de 65 años o más. En 2005, señaló, menos del 1% de los adultos mayores declararon haber consumido cannabis el año anterior.

¿Qué impulsa este aumento? Los expertos citan el avance constante de la legalización estatal —el consumo entre los seniors es mayor en esos estados—, mientras que las encuestas muestran que el riesgo percibido de consumir cannabis ha disminuido.

Una encuesta nacional reveló que una proporción creciente de adultos estadounidenses —el 44 % en 2021— creía erróneamente que era más seguro fumar cannabis a diario que cigarrillos. Los autores del estudio, publicado en JAMA Network Open, señalaron que “estas opiniones no reflejan la evidencia científica existente sobre el cannabis y el humo del tabaco”.

La industria del cannabis también comercializa sus productos entre los adultos mayores. La cadena Trulieve ofrece un 10% de descuento, tanto en tiendas como en internet, a quienes considera clientes “sabios”, de 55 años o más. Rise Dispensaries implementó un programa de educación y empoderamiento sobre el cannabis de un año de duración para dos centros para personas mayores en Paterson, Nueva Jersey, que incluyó visitas a su dispensario.

La industria cuenta con muchos clientes mayores satisfechos. Liz Logan, de 67 años, escritora independiente de Bronxville, Nueva York, llevaba años lidiando con problemas de sueño y ansiedad, pero estas afecciones se volvieron particularmente debilitantes hace dos años, cuando su esposo se estaba muriendo a causa del Parkinson. “Con frecuencia me quedaba despierta hasta las 5 o 6 de la mañana”, dijo. “Te enloquece”.

Buscando productos comestibles de cannabis en línea, Logan descubrió que los masticables que contenían cannabidiol, conocido como CBD, por sí solas no ayudaban, pero las que contenían 10 miligramos de THC sí lo hacían sin efectos secundarios notables. “Ya no me preocupa dormir”, dijo. “He resuelto un problema de toda la vida”.

Sin embargo, estudios en Estados Unidos y Canadá, en donde se legalizó el consumo de cannabis no medicinal para adultos a nivel nacional en 2018, muestran un aumento en las tasas de consumo de cannabis relacionadas con la atención médica entre las personas mayores, tanto en entornos ambulatorios como en hospitales.

Por ejemplo en California, las visitas a emergencias relacionadas con el cannabis en personas de 65 años o más aumentaron a 395 por cada 100.000 visitas en 2019, fueron cerca de 21 en 2005. En Ontario, la atención aguda (es decir, las visitas a emergencias o las internaciones) derivada del consumo de cannabis se quintuplicó en adultos de mediana edad entre 2008 y 2021, y más de 26 veces entre las personas de 65 años o más.

“Esto no refleja a todos los que consumen cannabis”, advirtió Daniel Myran, investigador del Instituto de Investigación en Salud Bruyère de Ottawa y autor principal del estudio de Ontario. “Está captando a personas con patrones más graves”.

Sin embargo, dado que otros estudios han demostrado un mayor riesgo cardíaco entre algunos consumidores de cannabis con afecciones cardíacas o diabetes, “existen varias señales de alerta”, afirmó.

n estudio reciente de JAMA Open reveló que una proporción alarmante de veteranos mayores que actualmente consumen cannabis dan positivo en la prueba del trastorno por consumo de cannabis.

Al igual que con otras adicciones, estos pacientes “pueden tolerar grandes cantidades”, afirmó la autora principal, Vira Pravosud, investigadora de cannabis en el Northern California Institute for Research and Education. “Continúan consumiendo incluso si interfiere con sus obligaciones sociales, laborales o familiares” y pueden experimentar síndrome de abstinencia si lo dejan.

Entre 4.500 veteranos mayores (con una edad promedio de 73 años) que buscaron atención en los centros de salud del Departamento de Asuntos de Veteranos (VA), los investigadores descubrieron que más del 10% había reportado consumo de cannabis en los 30 días anteriores. De ellos, el 36% cumplía los criterios de trastorno por consumo de cannabis leve, moderado o grave, según lo establecido en el Manual Diagnóstico y Estadístico de los Trastornos Mentales.

Los pacientes del VA difieren de la población general, señaló Pravosud. Son mucho más propensos a reportar abuso de sustancias y presentan “tasas más altas de enfermedades crónicas y discapacidades, y afecciones de salud mental como el TPEP [trastorno por estrés post traumático]” que podrían impulsar la automedicación, afirmó.

Las políticas actuales del VA no exigen que los médicos pregunten a los pacientes sobre el consumo de cannabis. Pravosud cree que deberían hacerlo.

Además porque “existe cada vez más evidencia de un posible efecto sobre la memoria y la cognición”, afirmó Myran, citando el estudio de su equipo sobre pacientes de Ontario con afecciones relacionadas con el cannabis que fueron a emergencias o fueron hospitalizados.

En comparación con otros pacientes de la misma edad y sexo que buscaron atención por otros motivos, las investigaciones muestran que estos pacientes (de 45 a 105 años) tuvieron un riesgo 1,5 veces mayor de un diagnóstico de demencia en un plazo de cinco años, y 3,9 veces mayor comparado con la población general.

Incluso después de ajustar por afecciones crónicas y factores sociodemográficos, quienes buscaron atención aguda a causa del consumo de cannabis tenían un riesgo un 23% mayor de demencia que los pacientes con enfermedades no relacionadas con el cannabis, y un riesgo 72% mayor que el de la población general.

Ninguno de estos estudios fueron ensayos clínicos aleatorios, indicaron los investigadores; fueron observacionales y no pudieron determinar la causalidad. Algunas investigaciones sobre el cannabis no especifican si los usuarios fuman, vapean, ingieren o se frotan cannabis tópico en las articulaciones doloridas; otros estudios no tienen información demográfica relevante.

“Es muy frustrante que no podamos ofrecer una orientación más individualizada sobre modos de consumo más seguros y sobre las cantidades de consumo que parecen de menor riesgo”, declaró Myran. “Esto simplemente pone de relieve que la rápida expansión del consumo regular de cannabis en Norteamérica está superando nuestro conocimiento”.

Aun así, dadas las vulnerabilidades de salud de los adultos mayores y la potencia mucho mayor de los productos de cannabis actuales en comparación con la marihuana que consumían en su juventud, él y otros investigadores piden cautela.

“Si consideramos el cannabis como una medicina, deberíamos ser receptivos a la idea de que hay grupos que probablemente no deberían consumirlo y que existen posibles efectos adversos”, afirmó. “Porque esto aplica a todas las medicinas”.

The New Old Age se produce en colaboración con The New York Times.

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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.” 

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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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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.

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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.”

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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. 

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In early April, President Donald Trump gathered dozens of hard-hat-clad coal miners around him in the White House East Room. He joked about arm-wrestling them and announced he was signing executive orders to boost coal production, “bringing back an industry that was abandoned,” and to “put the miners back to work.”

Trump said he calls it “beautiful, clean” coal. “I tell my people never use the word ‘coal’ unless you put ‘beautiful, clean’ before it.”

That same day, the Trump administration paused implementation of a rule that would help protect coal miners from an aggressive form of black lung disease. Enforcement of the new protections is officially halted until at least mid-August, according to a federal announcement that came a few days after a federal court agreed to put enforcement on hold to hear an industry challenge. But even if the rule takes full force after the delay, the federal agency tasked with enforcing it in Appalachia and elsewhere may not be up to the task after sweeping layoffs and office closures.

Deaths from black lung — a chronic condition caused by inhaling coal dust — had been in decline since the introduction of federal regulations over a half-century ago. But in recent decades, cases have risen precipitously. By 2018, the Centers for Disease Control and Prevention estimated that the lungs of about 1 in 5 coal miners in central Appalachia showed evidence of black lung. It is being diagnosed in younger miners. And the deadliest form, progressive massive fibrosis, has increased tenfold among long-term miners.

Silica is the primary culprit. Exposure to it has increased since mining operations began cutting through more sandstone to reach deeper coal deposits. The stone breaks into sharp particles that, when airborne, can become trapped in lung tissue and cause a debilitating, sometimes fatal condition.

The new rule was set to take effect in April, cutting the allowable level of silica dust in the air inside mines by half — to the limit already in place for other industries — and set stricter guidelines for enforcement.

Years in the making, advocates for miners heralded the new standards as a breakthrough. “It is unconscionable that our nation’s miners have worked without adequate protection from silica dust despite it being a known health hazard for decades,” acting Labor Secretary Julie Su said when the rule was announced last spring under the Biden administration.

The rule pause came on top of another blow to mine safety oversight. In March, the Department of Government Efficiency, created by a Trump executive order, announced it would end leases for as many as three dozen field offices of the Department of Labor’s Mine Safety and Health Administration, with the future of those employees undetermined. That agency is responsible for enforcing mining safety laws.

Then in April, two-thirds — nearly 900 — of the workers at the National Institute of Occupational Safety and Health, an agency within the Department of Health and Human Services, were fired. As a result, NIOSH’s Coal Workers’ Health Surveillance Program, which offered miners free screenings from a mobile clinic, ceased operations.

An announcement by MSHA of the silica rule delay cited the “unforeseen NIOSH restructuring and other technical reasons” as catalysts for the pause but didn’t mention the federal court decision in the case seeking to rescind the rule.

Separately, on May 7, attorney Sam Petsonk filed a class-action lawsuit against Health and Human Services and its head, Robert F. Kennedy Jr., to reinstate the program. His client in the case, Harry Wiley, a West Virginia coal miner, was diagnosed with an early stage of black lung and applied to NIOSH for a transfer to an environment with less dust exposure but never received a response. He continues to work underground.

On May 13, U.S. District Judge Irene Berger issued a preliminary injunction to reinstate the surveillance program employees. The next day, Kennedy said the administration would reverse the firings of 328 NIOSH employees. That day, they were back at work.

“Remaining in a dusty job may reduce the years in which Mr. Wiley can walk and breathe unassisted, in addition to hastening his death,” Berger wrote. “It is difficult to imagine a clearer case of irreparable harm.”

MSHA officials declined to respond to specific questions about the silica rule or plans to implement and enforce it, citing the ongoing litigation.

In an emailed statement, Labor Department spokesperson Courtney Parella said, “The Mine Safety and Health Administration is confident it can enforce all regulations under its purview. MSHA inspectors continue to conduct legally required inspections and remain focused on MSHA’s core mission to prevent death, illness, and injury from mining and promote safe and healthful workplaces for U.S. miners.”

Wes Addington is quick to say a career in the mines isn’t necessarily a death sentence. He comes from generations of miners. One of his great-grandfathers worked 48 years underground and died at 88.

But Addington also said protecting the safety and health of miners requires diligence. He’s executive director of the Appalachian Citizens’ Law Center, a Whitesburg, Kentucky, nonprofit that represents and advocates for miners and their families. A study the center conducted found that staffers at the MSHA offices scheduled to close performed almost 17,000 health and safety inspections from January 2024 through February 2025.

Addington said NIOSH provided the data to document worsening conditions over the past few decades.

Addington’s organization has advocated for the new silica rule for 17 years. “We didn’t think it was perfect,” he said. He would have preferred lower exposure limits and more stringent monitoring requirements. “But, as it was, it was going to save lives.”

The cuts to the agency, Addington said, could affect every American worker who might be exposed to harmful elements in the workplace. NIOSH approves respirators prescribed by Occupational Safety and Health Administration regulations.

With fewer inspectors, miners are “more likely to get hurt on the job and those injuries could be fatal,” he said.

“And if you’re a miner that’s lucky enough to navigate that gantlet and make it through a 20-, 25-year career,” Addington said, “the likelihood that you develop disabling lung disease that ultimately kills you at an early age is much increased.”

The black lung clinic at Stone Mountain Health Services in southwestern Virginia has diagnosed 75 new cases of progressive massive fibrosis in the past year, according to its medical director, Drew Harris.

“People are dying from a dust-related disease that’s 100% preventable, and we’re not using all the things we could use to help prevent their disease and save their lives,” Harris said. “It’s just all very disheartening.”

He believes it would be a mistake for Kennedy to reorganize NIOSH as he has proposed, shifting the surveillance program team’s responsibilities to other employees.

“It’s a very unique expertise,” Harris said. The agency would be “losing the people that know how to do this well and that have been doing this for decades.”

Rex Fields first went to work in the mines in 1967, a year before an explosion killed 78 miners near the small town of Farmington, West Virginia. His wife, Tilda Fields, was aware of the hazards her husband would encounter — the safety issues, the long-term health concerns. Her dad died of black lung when she was 7. But it meant a well-paying job in a region that has forever offered precious few.

Rex, 77, now lives with an advanced stage of black lung disease. He’s still able to mow his lawn but is easily winded when walking uphill. It took him several weeks and two rounds of antibiotics to recover from a bout with bronchitis in March.

Throughout his career, Rex advocated for his fellow miners: He stepped in when he saw someone mistreated; he once tried, unsuccessfully, to help a unionization effort. For these efforts, he said, “I got transferred from the day shift to the third shift a time or two.”

Today, the Fieldses lobby on behalf of miners and share information about occupational dangers. Tilda organized a support group for families and widows. She worries about the next generation. Two of the Fieldses’ sons also went into mining.

“People in the mountains here, we learn to make do,” Tilda said. “But you want better. You want better for your kids than what we had, and you surely want their safety.”

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Colton George felt sick. The 9-year-old Indiana boy told his parents his stomach hurt. He kept running to the bathroom and felt too ill to finish a basketball game.

Days later, he lay in a hospital bed, fighting for his life. He had eaten tainted salad, according to a lawsuit against the lettuce grower filed by his parents on April 17 in federal court for the Southern District of Indiana.

The E. coli bacteria that ravaged Colton’s kidneys was a genetic match to the strain that killed one person and sickened nearly 90 people in 15 states last fall. Federal health agencies investigated the cases and linked them to a farm that grew romaine lettuce.

But most people have never heard about this outbreak, which a Feb. 11 internal FDA memo linked to a single lettuce processor and ranch as the source of the contamination. In what many experts said was a break with common practice, officials never issued public communications after the investigation or identified the grower who produced the lettuce.

From failing to publicize a major outbreak to scaling back safety alert specialists and rules, the Trump administration’s anti-regulatory and cost-cutting push risks unraveling a critical system that helps ensure the safety of the U.S. food supply, according to consumer advocates, researchers and former employees at the FDA and U.S. Department of Agriculture.

The investigation into the illnesses began near the end of the Biden administration but work on the lettuce outbreak wasn’t completed until Feb. 11. At that time, the decision was made by the Trump administration not to release the names of the grower and processor because the FDA said no product remained on the market.

The administration also has withdrawn a proposed regulation to reduce the presence of salmonella in raw poultry, according to an April USDA alert. It was projected to save more than $13 million annually by preventing more than 3,000 illnesses, according to the proposal.

Officials from the Department of Health and Human Services have said that food safety is a priority, and FDA Commissioner Marty Makary said in an April 29 interview with the newsletter Inside Medicine that the recent job cuts would not affect agency operations.

“The FDA had 9,500 employees in 2007. Last year it was nearly 19,000. Has the 100% increase in employees increased approval times, innovation, AI, food safety, or agency morale?” Makary asked. “No, it hasn’t. In fact, it’s increased regulatory creep.”

The FDA referred questions to HHS, which declined to comment or make Makary available for an interview. In a statement, the agency said “protecting public health and insuring food safety remain top priorities for HHS. FDA inspectors were not impacted [by job cuts] and this critical work will continue.”

Public health advocates warn companies and growers will face less regulatory oversight and fewer consequences for selling tainted food products as a result of recent FDA actions.

The administration is disbanding a Justice Department unit that pursues civil and criminal actions against companies that sell contaminated food and is reassigning its attorneys. Some work will be assumed by other divisions, according to a publicly posted memo from the head of the department’s criminal division and a white paper by the law firm Gibson Dunn.

The Justice Department did not respond to an email requesting comment.

“They need the DOJ to enforce the law,” said Sarah Sorscher, director of regulatory affairs at the Center for Science in the Public Interest, a nonprofit consumer advocacy group. “For an executive investing in food safety, the knowledge they could go to jail if they don’t is a really strong motivator.”

Federal regulators also want states to conduct more inspections, according to two former FDA officials, who spoke on the condition of anonymity out of fear of retaliation. But some Democratic lawmakers say states lack the resources to take over most food safety inspections.

“Handing that duty to state and local agencies is really troubling,” said Rep. Shontel M. Brown (D-Ohio). “They don’t have the resources, and it creates a potentially unsafe situation that puts families in Ohio and America at risk.”

The High Cost of Foodborne Illnesses

Foodborne illnesses exact a major economic toll in the United States, according to federal data, and cost thousands of lives each year. The U.S. Department of Agriculture estimates the deaths, chronic illness, medical treatment, and lost productivity from food-related illnesses amounted to $75 billion in 2023.

Each year, about 48 million people in the U.S. get sick with foodborne illnesses, 128,000 are hospitalized, and 3,000 die, according to the Centers for Disease Control and Prevention.

In its first few months, the administration has suspended a program known as the Food Emergency Response Network Proficiency Testing that ensures food-testing labs accurately identify pathogens that can sicken or kill, according to a former FDA official.

In March, the agency said it would delay from January 2026 to July 2028 compliance with a Biden-era rule that aims to speed up the identification and removal of potentially contaminated food from the market.

However, the FDA is taking aim at foreign food manufacturing, saying in a May 6 notice that it would expand unannounced inspections overseas. “This expanded approach marks a new era in FDA enforcement — stronger, smarter, and unapologetically in support of the public health and safety of Americans,” the notice said.

Some former FDA and USDA officials said that goal isn’t realistic, because U.S. inspectors often need to obtain travel visas that can wind up alerting companies to their arrival.

“It’s really, really difficult to do surprise inspections,” said Brian Ronholm, director of food policy for Consumer Reports and a former USDA deputy undersecretary for food safety. “The visa process can alert the local authority.”

HHS declined to address Ronholm’s concerns.

The FDA hasn’t met the mandated targets for inspecting food facilities in the U.S. since fiscal year 2018, and the agency has consistently fallen short of meeting its annual targets for foreign inspections, according to a January report by the U.S. Government Accountability Office.

Foodborne illness can turn serious. Listeria bacteria in cucumbers sickened dozens of people in April and May and left at least nine people hospitalized, according to the FDA. Salmonella in peanut butter killed nine in 2008 and 2009, resulting in criminal charges against company executives. And E. coli in cookie dough sickened more than 70 people in 2009, including a Nevada mother who died of complications from eating the raw dough.

‘Life or Death for Our Son’

E. coli, commonly found in feces, can be especially dangerous to children like Colton, the boy from Avon, Indiana, who ate contaminated lettuce. The bacteria can damage blood vessels and cause clots that destroy the kidneys, leading to strokes and comas. Consumers sickened by E. coli can pass it along to others, and, in some cases, the bacteria end up killing victims who never consumed the contaminated food.

By the time Colton’s mother brought him to the emergency room that November day, the bacteria were releasing toxins and damaging his blood cells and kidneys, according to his father, Chris George.

Colton was sent to Riley Hospital for Children in Indianapolis. Chris said doctors told him and his wife, Amber George, that their son was in kidney failure and the next 24 to 72 hours would determine whether he would survive, the father recalled.

“They said it was life or death for our son, and I was like, wait, he was just playing basketball,” said Chris, a firefighter. “I told them, ‘You do what you need to do to save my son.’”

Usually, the FDA alerts the public and identifies growers and food manufacturers when there are outbreaks like the one that sickened Colton. The FDA said in its February internal summary that the grower wasn’t named because no product remained on the market.

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

It also gives victims an explanation for their illnesses and helps them determine whom they might take legal action against, he said.

“Normally we would see the information on their websites,” Marler said, adding that the agency’s investigatory findings on the outbreak were “all redacted” and he obtained them through a Freedom of Information Act request.

The FDA, USDA, and CDC play central roles in overseeing food safety, including inspections and investigations. The FDA and CDC have been rocked by job cuts that are part of a reduction of 20,000 staff at HHS, their parent agency. The Agriculture Department has also shrunk its workforce.

Staffing cuts mean delays in publicizing deadly outbreaks, said Susan Mayne, an adjunct professor at Yale School of Public Health who retired from the FDA in 2023.

“Consumers are being notified with delays about important food safety notifications,” she said, referring to a recent outbreak in cucumbers. “People can die if there are pathogens like listeria, which can have a 30% fatality rate.”

Makary has said the cuts wouldn’t touch inspectors, reviewers, or scientists at the agency.

But the FDA laid off scientists in April who worked at food safety labs in Chicago and San Francisco, where they performed specialized analysis for food inspectors, former FDA officials said. The FDA later restored some positions.

“No scientists were fired? That was incorrect,” Mayne said.

Siobhan DeLancey, who worked in the agency’s Office of Foods and Veterinary Medicine for more than 20 years before she also was laid off in April, said new requirements for reviewing agency announcements became so arduous that it took weeks to get approval for alerts that should have been going out much sooner.

She said some employees who were laid off include communications specialists and web staff who do consumer outreach aimed at preventing illness. The USDA and FDA have been bringing some workers back or are asking some who accepted deferred resignations to take back their decisions.

“It’s all about destruction and not about efficiency,” DeLancey said. “We’re going to see the effects for years. It will cost lives.”

HHS did not respond to an email seeking a response to DeLancey’s comments.

For 13 days, Colton stayed on dialysis at the hospital, initially unable to eat or drink. His mother wet a sponge to moisten his lips and tongue.

He turned 10 in the hospital. Chris George bought paint markers to make signs on the windows of his son’s room.

“I am not happy with the CDC and FDA,” Chris George said. “Victims have a right to know who made them sick. This is my kid. He’s my life.”

Colton was able to leave the hospital almost three weeks after first eating the contaminated lettuce but still has nightmares about the ordeal and is seeing a therapist.

“The whole ‘Make America Healthy Again,’ the focus on taking food color dyes out of cereal?” said Chris George, who objects to the Trump administration’s decision to redact information about the grower in the February report. “How about we take E. coli out of our lettuce, so it doesn’t kill our kids?”

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Kristin Kramer woke up early on a Tuesday morning 10 years ago because one of her dogs needed to go out. Then, a couple of odd things happened.

When she tried to call her other dog, “I couldn’t speak,” she said. As she walked downstairs to let them into the yard, “I noticed that my right hand wasn’t working.”

But she went back to bed, “which was totally stupid,” said Kramer, now 54, an office manager in Muncie, Indiana. “It didn’t register that something major was happening,” especially because, reawakening an hour later, “I was perfectly fine.”

So she “just kind of blew it off” and went to work.

It’s a common response to the neurological symptoms that signal a TIA, a transient ischemic attack or ministroke. At least 240,000 Americans experience one each year, with the incidence increasing sharply with age.

Because the symptoms disappear quickly, usually within minutes, people don’t seek immediate treatment, putting them at high risk for a bigger stroke.

Kramer felt some arm tingling over the next couple of days and saw her doctor, who found nothing alarming on a CT scan. But then she started “jumbling” her words and finally had a relative drive her to an emergency room.

By then, she could not sign her name. After an MRI, she recalled, “my doctor came in and said, ‘You’ve had a small stroke.’”

Did those early-morning aberrations constitute a TIA? Might a 911 call and an earlier start on anticlotting drugs have prevented her stroke? “We don’t know,” Kramer said. She’s doing well now, but faced with such symptoms again, “I would seek medical attention.”

Now, a large epidemiological study by researchers at the University of Alabama-Birmingham and the University of Cincinnati, published in JAMA Neurology, points to another reason to take TIAs seriously: Over five years, study participants’ performance on cognitive tests after a TIA drops as steeply as it does among victims of a full-on stroke.

“If you have one stroke or one TIA, with no other event over time and no other change in your medical status, the rate of cognitive decline is the same,” said Victor Del Bene, a neuropsychologist and lead author of the study.

An accompanying editorial by Eric Smith, a neurologist at the University of Calgary, was pointedly headlined “Transient Ischemic Attack — Not So Transient After All!”

The study showed that even if the symptoms resolve — typically within 15 minutes to an hour — TIAs set people on a different cognitive slope later in life, Smith said in an interview: “a long-lasting change in people’s cognitive ability, possibly leading to dementia.”

The study, analyzing findings from data on more than 30,000 participants, followed three groups of adults age 45 or older with no history of stroke or TIA. “It’s been a hard group to study because you lack the baseline data of how they were functioning prior to the TIA or stroke,” Del Bene said.

With this longitudinal study, however, researchers could separate those who went on to have a TIA from a group who went on to suffer a stroke and also from an asymptomatic control group. The team adjusted their findings for a host of demographic variables and health conditions.

Immediately after a TIA, “we don’t see an abrupt change in cognition,” as measured by cognitive tests administered every other year, Del Bene said. The stroke group showed a steep decline, but the TIA and control group participants “were more or less neck and neck.”

Five years later, the picture was different. People who had experienced TIAs were cognitively better off than those who had suffered strokes. But both groups were experiencing cognitive decline, and at equally steep rates.

After accounting for various possible causes, the researchers concluded that the cognitive drop reflected not demographic factors, chronic illnesses, or normal aging, but the TIA itself.

“It’s not dementia,” Del Bene said of the decline after a TIA. “It may not even be mild cognitive impairment. But it’s an altered trajectory.”

Of course, most older adults do have other illnesses and risk factors, like heart disease, diabetes, or smoking. “These things together work synergistically to increase the risk for cognitive decline and dementia over time,” he said.

The findings reinforce long-standing concerns that people experiencing TIAs don’t respond quickly enough to the incident. “These events are serious, acute, and dangerous,” said Claiborne Johnston, a neurologist and chief medical officer of Harbor Health in Austin, Texas.

After a TIA, neurologists put the risk of a subsequent stroke within 90 days at 5% to 20%, with half that risk occurring in the first 48 hours.

“Feeling back to normal doesn’t mean you can ignore this, or delay and discuss it with your primary care doctor at your next visit,” Johnston said. The symptoms should prompt a 911 call and an emergency room evaluation.

How to recognize a TIA? Tracy Madsen, an epidemiologist and emergency medicine specialist at the University of Vermont, promotes the BE FAST acronym: balance loss, eyesight changes, facial drooping, arm weakness, speech problems. The “T” is for time, as in don’t waste any.

“We know a lot more about how to prevent a stroke, as long as people get to a hospital,” said Madsen, vice chair of an American Heart Association committee that, in 2023, revised recommendations for TIAs.

The statement called for more comprehensive and aggressive testing and treatment, including imaging, risk assessment, anticlotting and other drugs, and counseling about lifestyle changes that reduce stroke risk.

Unlike other urgent conditions, a TIA may not look dramatic or even be visible; patients themselves have to figure out how to respond.

Karen Howze, 74, a retired lawyer and journalist in Reno, Nevada, didn’t realize that she’d had several TIAs until after a doctor noticed weakness on her right side and ordered an MRI. Years later, she still notices some effect on “my ability to recall words.”

Perhaps “transient ischemic attack” is too reassuring a label, Johnston and a co-author argued in a 2022 editorial in JAMA. They suggested that giving a TIA a scarier name, like “minor ischemic stroke,” would more likely prompt a 911 call.

The experts interviewed for this column all endorsed the idea of a name that includes the word “stroke.”

Changing medical practice is “frustratingly slow,” Johnston acknowledged. But whatever the nomenclature, keeping BE FAST in mind could lead to more examples like Wanda Mercer, who shared her experience in a previous column.

In 2018, she donated at the bloodmobile outside her office in Austin, where she was a systems administrator for the University of Texas, then walked two blocks to a restaurant for lunch. “Waiting in line, I remember feeling a little lightheaded,” she said. “I woke up on the floor.”

Reviving, she assured the worried restaurant manager that she had merely fainted after giving blood. But the manager had already called an ambulance — this was smart move No. 1.

The ER doctors ran tests, saw no problems, gave Mercer intravenous fluids, and discharged her. “I began to tell my colleagues, ‘Guess what happened to me at lunch!’” she recalled. But, she said, she had lost her words: “I couldn’t articulate what I wanted to say.”

Smart move No. 2: Co-workers, suspecting a stroke, called the EMTs for the second time. “I was reluctant to go,” Mercer said. “But they were right.” This time, emergency room doctors diagnosed a minor stroke.

Mercer has had no recurrences. She takes a statin and a baby aspirin daily and sees her primary care doctor annually. Otherwise, at 73, she has retired to an active life of travel, pickleball, running, weightlifting, and book groups.

“I’m very grateful,” she said, “that I have a happy story to tell.”

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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HAMILTON, Mont. — Scientists are often careful to take off their work badges when they leave the campus of one of the nation’s top research facilities, here in southwestern Montana’s Bitterroot Valley.

It’s a reflection of the long-standing tension caused by Rocky Mountain Laboratories’ improbable location in this conservative, blue-collar town of 5,000 that was built on logging.

Many residents are proud of the internationally recognized research unfolding at the National Institutes of Health facility and acknowledge that Rocky Mountain Labs has become an economic driver for Hamilton. But a few locals resent what they consider the elitest scientists at the facility, which has employed about 500 people in recent years. Or they fear the contagious pathogens studied there could escape the labs’ well-protected walls.

That split widened with the covid-19 pandemic and the divisions that emerged from mask mandates and vaccine development. In 2023, Matt Rosendale, a Republican who was then a U.S. representative from Montana, falsely tied the lab to the origins of covid in an attempt to cut its funding. Now, Hamilton is a prime example of how the Trump administration’s mass federal layoffs and cancellation of research grants are having ripple effects in communities far from Washington, D.C.

On an April afternoon, hundreds of people filled the sidewalks at an intersection of Hamilton’s usually quiet downtown, waving signs that read “Hands Off Federal Workers” and “Stop Strangling Science.” Some driving by honked in support, rolled their windows down, and cheered. Others flipped off the rallygoers and cast insults at them. A passing bicyclist taunted protesters with chants of “DOGE” — short for the Department of Government Efficiency, the federal initiative led by billionaire Elon Musk to cut costs that has driven mass layoffs and slashed programs.

Kim Hasenkrug, a former Rocky Mountain Labs researcher of 31 years, who retired in 2022, joined the crowd. He slammed President Donald Trump’s promise to let Health and Human Services Secretary Robert F. Kennedy Jr. “go wild” on health issues.

“We’re beginning to see what ‘going wild’ looks like,” Hasenkrug said. “These cuts will not streamline research. They will throttle it.”

As of early May, 41 Rocky Mountain Labs workers had been let go or told their contracts would end this summer, and nine more had retired early, according to researchers employed by the facility. KFF Health News spoke with 10 current or former Rocky Mountain Labs workers who requested anonymity to speak about information that has not been publicly released. The federal government has also slashed billions of dollars for research, including at least $29 million in grants to Montana recipients, ranging from university scientists to the state health department. That’s according to HHS data confirmed by KFF Health News.

Scientists who remain in Hamilton said research has slowed. They’ve struggled to buy basic gear amid federal directives that changed how orders are placed. Now, more cuts are planned for workers who buy and deliver critical, niche supplies, such as antibodies, according to researchers at the labs.

The Department of Health and Human Services didn’t respond to repeated requests for more information on the government’s cuts to research, including questions about the changes in Hamilton. Deputy press secretary Emily Hilliard said the department is committed to the “continuity of essential research.”

Some within the lab feel as if they’ve become public enemies or outcasts, unable to defend themselves without risking their jobs. Postdoctoral scientists just starting their careers are seeing options dwindle. Some workers whose employment contracts expire within days or weeks have been in the dark about whether they’ll be renewed. At least one Rocky Mountain Labs scientist moved to another country to research infectious disease, citing “current turmoil,” according to an email sent from the scientist to co-workers that was reviewed by KFF Health News.

“The remaining staff has been discredited, disrespected, and discouraged from remaining in public service,” Hasenkrug said.

The National Institutes of Health is the largest public funder of biomedical research in the world. It has 27 institutes and centers focused on understanding illness and disabilities and improving health. The agency’s research has helped lead to vaccines against major diseases — from smallpox to covid — and has been behind the majority of medicines approved for the U.S. market. That research also generated more than $94.5 billion in new economic activity nationwide, according to United for Medical Research, a coalition of research groups and advocates.

The Trump administration aims to eliminate roughly 1,200 jobs at the NIH and shrink its budget by 40%. The administration’s budget proposal to cut NIH funding calls the agency’s spending “wasteful,” deems its research “risky,” and accuses it of promoting “dangerous ideologies.”

It’s a dramatic political turnabout for the NIH, which for decades enjoyed bipartisan support in Washington. From 2015 to 2023, its annual budget grew by more than $17 billion.

As of 2023, Rocky Mountain Labs was one of only 51 facilities in the world with the highest level of biosafety precautions, according to the Global BioLabs mapping project. In April, HHS indefinitely stalled work at another of those labs, the Integrated Research Facility in Frederick, Maryland, Wired reported.

Kennedy has said the nation should pause funding infectious disease research, and the White House has said it plans to intensify scrutiny of gain-of-function research, which involves altering a pathogen to study its spread.

Hamilton, in Ravalli County, is a place of scientists, ranchers, and outdoor recreationists. Here, 1 in 8 people live below the federal poverty line. Nearly 70% of county residents who participated in the 2024 presidential election voted for Trump, and Trump signs still dot U.S. Highway 93 leading to town. In the thick of the covid pandemic, the sheriff and county commissioners refused to enforce a statewide mandate to mask in public spaces while Rocky Mountain Labs researchers worked to understand the virus.

The lab’s work dates to 1900, and even early on it was controversial. Rocky Mountain spotted fever was killing people in the valley. Researchers found the cause — ticks — and worked to eradicate the disease-carrying bugs by requiring ranchers to treat their cattle.

That created resentment among locals who “already harbored a healthy distrust of government-imposed programs,” according to an NIH account. The tension came to a head in 1913 when a “dipping vat” used to chemically treat cattle was blown up with dynamite and another damaged with sledgehammers.

Now, some residents and local leaders are worried about the economic consequences of an exodus of federal workers and their salaries. Most of the county is government-managed public land, and the first wave of federal cuts hit U.S. Forest Service workers who do everything from clear trails to fight wildfires.

Rocky Mountain Labs generates hundreds of millions of dollars for the local economy by creating more work for industries including construction and bringing more people into the city’s shops, a 2023 University of Montana study found. The rural community is also a base for international vaccine developer GSK due to the lab’s presence. Kathleen Quinn, a vice president of communications for the company, said GSK’s business with government agencies “continues as usual” for now amid federal changes and that it’s “too early to say what any longer-term impact could be.”

“Our community is impacted more than most,” said City Councilor Darwin Ernst. He spoke during an overflowing March town hall to discuss the federal government cuts. Hundreds of people turned out on the weeknight asking city councilors to do something.

Ernst, a former researcher at the lab who now works as a real estate broker and appraiser, said in an interview he’s starting to see more homes enter the market, which he attributed to the atmosphere of uncertainty and former federal workers’ having to find jobs elsewhere.

“Someone recently left with her entire family. Because of the layoffs, they can’t afford to live here,” he said. “Some people retire here but that’s not everyone.”

Jane Shigley said she’s been a Hamilton resident for more than 30 years and initially thought the government would find “some inefficiencies, no big deal.” But now she’s worried about her hometown’s future.

“Something’s going on that we can’t control,” Shigley said. “And the people that it’s happening to aren’t allowed to talk to us about it.”

The City Council sent a letter to federal officials in April asking for formal consultation prior to any significant changes, given Hamilton’s “interdependence” with Rocky Mountain Labs and the federally controlled lands surrounding Hamilton. As of May, city leaders hadn’t received a response.

People in town are split on how badly the federal cuts will affect Hamilton.

Julie Foster, executive director of the Ravalli County Economic Development Authority, said the community survived the decline of logging, and she thinks Rocky Mountain Labs will survive, too.

“It will be here. There may be bumps in the road, but this is a resilient place,” Foster said.

Even amid the cuts, Rocky Mountain Labs is in the process of a building expansion that, so far, hasn’t stopped. And researchers’ work continues. This spring, scientists there helped make the first identification in Montana of a species of tick known to carry Lyme disease.

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

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

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