From California Healthline.org – Page 6

Millions in US Live in Places Where Doctors Don’t Practice and Telehealth Doesn’t Reach

BOLIGEE, Ala. — Green lights flickered on the wireless router in Barbara Williams’ kitchen. Just one bar lit up — a weak signal connecting her to the world beyond her home in the Alabama Black Belt.

Next to the router sat medications, vitamin D pills, and Williams’ blood glucose monitor kit.

“I haven’t used that thing in a month or so,” said Williams, 72, waving toward the kit. Diagnosed with diabetes more than six years ago, she has developed nerve pain from neuropathy in both legs.

Williams is one of nearly 3 million Americans who live in mostly rural counties that lack both health care and reliable high-speed internet, according to an analysis by KFF Health News, which showed that these people tend to live sicker and die younger than others in America.

Compared with those in other regions, patients across the rural South, Appalachia, and remote West are most often unable to make a video call to their doctor or log into their patient portals. Both are essential ways to participate in the U.S. medical system. And Williams is among those who can do neither.

This year, more than $42 billion allocated in the 2021 Infrastructure Investment and Jobs Act is expected to begin flowing to states as part of a national “Internet for All” initiative launched by the Biden administration. But the program faces uncertainty after Commerce Department Secretary Howard Lutnick last week announced a “rigorous review” asserting that the previous administration’s approach was full of “woke mandates.”

High rates of chronic illness and historical inequities are hallmarks of many of the more than 200 U.S. counties with poor services that KFF Health News identified. Dozens of doctors, academics, and advocates interviewed for this article unanimously agreed that limited internet service hinders medical care and access.

Without fast, reliable broadband, “all we’re going to do is widen health care disparities within telemedicine,” said Rashmi Mullur, an endocrinologist and chief of telehealth at VA Greater Los Angeles. Patients with diabetes who also use telemedicine are more likely to get care and control their blood sugar, Mullur found.

Diabetes requires constant management. Left untreated, uncontrolled blood sugar can cause blindness, kidney failure, nerve damage, and eventually death.

Williams, who sees a nurse practitioner at the county hospital in the next town, said she is not interested in using remote patient monitoring or video calls.

“I know how my sugar affects me,” Williams said. “I get a headache if it’s too high.” She gets weaker when it’s down, she said, and always carries snacks like crackers or peppermints.

Williams said she could even drink a soda pop — orange, grape — when her sugar is low but would not drink one when she felt it was high because she would get “kind of goozie-woozy.”

A close-up image of a woman's hands as she holds a lancing device to the ring finger of her left hand. — Barbara Williams pricks her finger using a home blood glucose monitoring kit. Williams monitors her blood sugar levels and says she can feel when her sugar is high or low.(Andi Rice for KFF Health News)

‘This Is America’

Connectivity dead zones persist in American life despite at least $115 billion lawmakers have thrown toward fixing the inequities. Federal broadband efforts are fragmented and overlapping, with more than 133 funding programs administered by 15 agencies, according to a 2023 federal report.

“This is America. It’s not supposed to be this way,” said Karthik Ganesh, chief executive of Tampa, Florida-based OnMed, a telehealth company that in September installed a walk-in booth at the Boligee Community Center about 10 minutes from Williams’ home. Residents can call up free life-size video consultations with an OnMed health care provider and use equipment to check their weight and blood pressure.

OnMed, which partnered with local universities and the Alabama Cooperative Extension System, relies on SpaceX’s Starlink to provide a high-speed connection in lieu of other options.

A booth with a large screen on the left and a door with a window on the right and the text "OnMed Care Station" at the top. Through the window can be seen a man in a t-shirt, jeans, and cap sitting inside a booth with his right arm in a device. — Greene County resident Samuel Knott tests the OnMed booth during a community event in September. Knott said the booth was “fast and everything” and he planned to use it when he didn’t want to drive “all the way” to his primary care provider. (Sarah Jane Tribble/KFF Health News)

A woman wearing a plaid blazer over a collared shirt and sweater sits behind a desk and smiles at the camera. — Boligee Mayor Hattie Samuels says the tiny rural community needs more health care, especially for older residents. She says the OnMed virtual walk-in booth is “truly a blessing.” (Andi Rice for KFF Health News)

A short drive from the community center, beyond Boligee’s Main Street with its deserted buildings and an empty railroad depot and down a long gravel drive, is the 22-acre property where Williams lives.

Last fall, Williams washed a dish in her kitchen, with its unforgiving linoleum-topped concrete floors. A few months earlier, she said, a man at the community center signed her up for “diabetic shoes” to help with her sore feet. They never arrived.

As Williams spoke, steam rose from a pot of boiling potatoes on the stove. Another pan sizzled with hamburger steak. And on a back burner simmered a mix of Velveeta cheese, diced tomatoes, and peppers.

She spent years on her feet as head cook at a diner in Cleveland, Ohio. The oldest of nine, Williams returned to her family home in Greene County more than 20 years ago to care for her mother and a sister, who both died from cancer in the back bedroom where she now sleeps.

A dirt road leads to single-story white house and a yellow house is to the right. Trees are to the left and behind the houses and a large expanse of grass with a few bushes and plants is in front of the houses. — Barbara Williams, the oldest of nine children, moved back to the family’s home decades ago to take care of her dying mother and sister.(Sarah Jane Tribble/KFF Health News)

Williams looked out a window and recalled when the landscape was covered in cotton that she once helped pick. Now three houses stand in a carefully tended clearing surrounded by tall trees. One belongs to a brother and the other to a sister who drives with her daily to the community center for exercise, prayers, and friendship with other seniors.

All the surviving siblings, Williams said, have diabetes. “I don’t know how we became diabetic,” she said. Neither of their parents had been diagnosed with the illness.

In Greene County, an estimated quarter of adults have diabetes — twice the national average. The county, which has about 7,600 residents, also has among the nation’s highest rates for several chronic diseases such as high blood pressure, stroke, and obesity, Centers for Disease Control and Prevention data shows.

The county’s population is predominately Black. The federal CDC reports that Black Americans are more likely to be diagnosed with diabetes and are 40% more likely than their white counterparts to die from the condition. And in the South, rural Black residents are more likely to lack home internet access, according to the Joint Center for Political and Economic Studies, a Washington-based think tank.

To identify counties most lacking in reliable broadband and health care providers, KFF Health News used data from the Federal Communications Commission and George Washington University’s Mullan Institute for Health Workforce Equity. Reporters also analyzed U.S. Census Bureau, CDC, and other data to understand the health status and demographics of those counties.

The analysis confirms that internet and care gaps are “hitting areas of extreme poverty and high social vulnerability,” said Clese Erikson, deputy director of the health workforce research center at the Mullan Institute.

Digital Haves vs. Have-Nots

Just over half of homes in Greene County have access to reliable high-speed internet — among the lowest rates in the nation. Greene County also has some of the country’s poorest residents, with a median household income of about $31,500. Average life expectancy is less than 72 years, below the national average.

By contrast, the KFF Health News analysis found that counties with the highest rates of internet access and health care providers correlated with higher life expectancy, less chronic disease, and key lifestyle factors such as higher incomes and education levels.

One of those is Howard County, Maryland, between Baltimore and Washington, D.C., where nearly all homes can connect to fast, reliable internet. The median household income is about $147,000 and average life expectancy is more than 82 years — a decade longer than in Greene County. A much smaller share of residents live with chronic conditions such as diabetes.

One is 78-year-old Sam Wilderson, a retired electrical engineer who has managed his Type 2 diabetes for more than a decade. He has fiber-optic internet at his home, which is a few miles from a cafe he dines at every week after Bible study. On a recent day, the cafe had a guest Wi-Fi download speed of 104 megabits per second and a 148 Mbps upload speed. The speeds are fast enough for remote workers to reliably take video calls.

Americans are demanding more speed than ever before. Most households have multiple devices — televisions, computers, gaming systems, doorbells — in addition to phones that can take up bandwidth. The more devices connected, the higher minimum speeds are needed to keep everything running smoothly.

To meet increasing needs, federal regulators updated the definition of broadband last year, establishing standard speeds of 100/20 Mbps. Those speeds are typically enough for several users to stream, browse, download, and play games at the same time.

Christopher Ali, professor of telecommunications at Penn State, recommends minimum standard speeds of 100/100 Mbps. While download speeds enable consumption, such as streaming or shopping, fast upload speeds are necessary to participate in video calls, say, for work or telehealth.

At the cafe in Howard County, on a chilly morning last fall, Wilderson ordered a glass of white wine and his usual: three-seeded bread with spinach, goat cheese, smoked salmon, and over-easy eggs. After eating, Wilderson held up his wrist: “This watch allows me to track my diabetes without pricking my finger.”

Wilderson said he works with his doctors, feels young, and expects to live well into his 90s, just as his father and grandfather did.

Telehealth is crucial for people in areas with few or no medical providers, said Ry Marcattilio, an associate director of research at the Institute for Local Self-Reliance. The national research and advocacy group works with communities on broadband access and reviewed KFF Health News’ findings.

High-speed internet makes it easier to use video visits for medical checkups, which most patients with diabetes need every three months.

Being connected “can make a huge difference in diabetes outcomes,” said Nestoras Mathioudakis, an endocrinologist and co-medical director of Johns Hopkins Medicine Diabetes & Education Program, who treats patients in Howard County.

Paying More for Less

At Williams’ home in Alabama, pictures of her siblings and their kids cover the walls of the hallway and living room. A large, wood-framed image of Jesus at the Last Supper with his disciples hangs over her kitchen table.

Williams sat down as her pots simmered and sizzled. She wasn’t feeling quite right. “I had a glass of orange juice and a bag of potato chips, and I knew that wasn’t enough for breakfast, but I was cooking,” Williams said.

Every night Williams takes a pill to control her diabetes. In the morning, if she feels as if her sugar is dropping, she knows she needs to eat. So, that morning, she left the room to grab a peppermint, walking by the flickering wireless router.

The router’s download and upload speeds were 0.03/0.05 Mbps, nearly unusable by modern standards. Williams’ connection on her house phone can sound scratchy, and when she connects her cellphone to the router, it does not always work. Most days it’s just good enough for her to read a daily devotional website and check Facebook, though the stories don’t always load.

Rural residents like Williams paid nearly $13 more a month on average in late 2020 for slow internet connections than those in urban areas, according to Brian Whitacre, an agricultural economics professor at Oklahoma State University.

“You’re more likely to have competition in an urban area,” Whitacre said.

In rural Alabama, cellphone and internet options are limited. Williams pays $51.28 a month to her wireless provider, Ring Planet, which did not respond to calls and emails.

The train crossing of a rural road surrounded by three low buildings. — Once known for its busy railroad depot and cotton mills, the small town of Boligee, Alabama, sits nearly empty today.(Sarah Jane Tribble/KFF Health News)

In Howard County, Maryland, national fiber-optic broadband provider Verizon Communications faces competition from Comcast, a hybrid fiber-optic and cable provider. Verizon advertises a home internet plan promising speeds of 300/300 Mbps starting at $35 a month for its existing mobile customers. The company also offers a discounted price as low as $20 a month for customers who participate in certain federal assistance programs.

“Internet service providers look at the economics of going into some of these communities and there just isn’t enough purchasing power in their minds to warrant the investment,” said Ross DeVol, chief executive of Heartland Forward, a nonpartisan think tank based in Bentonville, Arkansas, that specializes in state and local economic development.

Conexon, a fiber-optic cable construction company, estimates it costs $25,000 per mile to build above-ground fiber lines on poles and $60,000 to $70,000 per mile to build underground.

A mural on the side of a building depicts two scenes with "Boligee" painted between the scenes. — A mural depicting Boligee, Alabama’s agricultural history appears on the side of the small town’s community center, which is a converted school building that houses city offices, a senior center, and event space. (Sarah Jane Tribble/KFF Health News)

Former President Joe Biden’s 2021 infrastructure law earmarked $65 billion with a goal of connecting all Americans to high-speed internet. Money was designated to establish digital equity programs and to help low-income customers pay their internet bills. The law also set aside tens of billions through the Broadband Equity Access and Deployment Program, known as BEAD, to connect homes and businesses.

That effort prioritizes fiber-optic connections, but federal regulators recently outlined guidance for alternative technologies, including low Earth orbit satellites like SpaceX’s Starlink service.

Funding the use of satellites in federal broadband programs has been controversial inside federal agencies. It has also been a sore point for Elon Musk, who is chief executive of SpaceX, which runs Starlink, and is a lead adviser to President Donald Trump.

After preliminary approval, a federal commission ruled that Starlink’s satellite system was “not reasonably capable” of offering reliable high speeds. Musk tweeted last year that the commission had “illegally revoked” money awarded under the agency’s Trump-era Rural Digital Opportunity Fund.

In February, Trump nominated Arielle Roth to lead the federal agency overseeing the infrastructure act’s BEAD program. Roth is telecommunications policy director for the Senate Committee on Commerce, Science, and Transportation. Last year, she criticized the program’s emphasis on fiber and said it was beleaguered by a “woke social agenda” with too many regulations.

Commerce Secretary Lutnick last week said he will get rid of “burdensome regulations” and revamp the program to “take a tech-neutral approach.” Republicans echoed his positions during a U.S. House subcommittee hearing the same day.

When asked about potentially weakening the program’s required low-cost internet option, former National Telecommunications and Information Administration official Sarah Morris said such a change would build internet connections that people can’t afford. Essentially, she said, they would be “building bridges to nowhere, building networks to no one.”

An image of a woman sitting at a table preparing to test her blood glucose. She has short curtly hair and glasses, and wears a black and white striped blouse. A zippered pouch sits on the table beside her. — Barbara Williams pricks her finger using a home blood glucose monitoring kit. Williams monitors her blood sugar levels and says she can feel when her sugar is high or low.(Andi Rice for KFF Health News)

‘That Hurt’

Over a lunch of tortilla chips with the savory sauce that had been simmering on the stove, Williams said she hadn’t been getting regular checkups before her diabetes diagnosis.

“To tell you the truth, if I can get up and move and nothing is bothering me, I don’t go to the doctor,” Williams said. “I’m just being honest.”

Years ago, Williams recalled, “my head was hurting me so bad I had to just lay down. I couldn’t stand up, walk, or nothing. I’d get so dizzy.”

Williams thought it was her blood pressure, but the doctor checked for diabetes. “How did they know? I don’t know,” Williams said.

As lunch ended, she pulled out her glucose monitor. Williams connected the needle and wiped her finger with an alcohol pad. Then she pricked her finger.

“Oh,” Williams said, sucking air through her teeth. “That hurt.”

She placed the sample in the machine, and it quickly displayed a reading of 145 — a number, Williams said, that meant she needed to stop eating.

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

Click to open the Methodology

Methodology

Here’s how KFF Health News did its analysis for the “Dead Zone” series, which pinpointed counties that lag behind the rest of the United States in access to broadband service and health care providers.

To identify “dead zones,” KFF Health News consulted two main data sources.

The Federal Communications Commission National Broadband Map was used to identify broadband deserts as of June 2024. We used the FCC’s minimum speed standard of 100 Mbps download and 20 Mbps upload, and followed its definition of reliable broadband: service accessible via wired (fiber optics, cable, DSL) or licensed fixed wireless technology. It’s the standard for grants awarded through the federal Broadband Equity, Access, and Deployment Program, known as BEAD. The FCC data shows whether such service is available, and not necessarily whether households subscribe to it.
Data from George Washington University’s Fitzhugh Mullan Institute for Health Workforce Equity was used to determine counties with health provider shortages. GWU’s data on primary care providers (family and internal medicine doctors, pediatricians, obstetricians and gynecologists, physician assistants, and nurse practitioners) reflects providers who serve at least one person enrolled in Medicaid. We used the most recent years available: 2020 for 44 states, and 2019 data for Texas. Five states — Delaware, Florida, Maine, Minnesota, and New Hampshire — were excluded from analysis because they lacked reliable data for either year.

GWU’s data for behavioral health providers reflects psychiatrists, psychologists, counselors, therapists, and addiction medicine specialists, regardless of whether their patients receive Medicaid. We used data from 2021, the most recent year available.

We classified counties as “dead zones” if they met these criteria:

Fewer than 70% of homes had access to fast, reliable broadband.
They ranked in the bottom third of Medicaid primary care providers, defined as the number of Medicaid enrollees per provider.
They ranked in the bottom third of behavioral health providers, defined as the number of residents per provider.

A total of 210 counties met those criteria. At the other extreme, we defined 203 counties as “most served” if they had the most residences with broadband access (at least 96.7%) and ranked in the top third of Medicaid primary care and behavioral health provider ratios.

We also compared the health outcomes and demographics of dead zone counties relative to others using several data sources:

MRNA Vaccines, Once a Trump Boast, Now Face Attacks From Some in GOP

Researchers racing to develop bird flu vaccines for humans have turned to a cutting-edge technology that enabled the rapid development of lifesaving covid shots.

There’s a catch: The mRNA technology faces growing doubts among Republicans, including people around President Donald Trump.

Legislation aimed to ban or limit mRNA vaccines was introduced this year by GOP lawmakers in at least seven states. In some cases, the measures would hit doctors who give the injections with criminal penalties, fines, and possible revocation of their licenses.

Some congressional Republicans are also pressing regulators to revoke federal approval for mRNA-based covid shots, which President Donald Trump touted as one of the signature achievements of his first term.

The opposition comes at a critical juncture because vaccines using mRNA have applications well beyond avian flu and covid. They hold the promise of lifesaving breakthroughs to treat many diseases, from melanoma to HIV to Zika, according to clinical trials. The proposed bans could block access to these advances.

MRNA is found naturally in human cells. It is a molecule that carries genetic material and, in a vaccine, trains the body’s immune system to fight viruses, cancer cells, and other conditions. An advantage of mRNA technology is that it can be developed more quickly to target specific variants and is safer than developing a vaccine made from inactivated virus.

“Right now, if we had a bird flu pandemic, we would have a shortage of the vaccine we need,” said Michael Osterholm, director of the University of Minnesota’s Center for Infectious Disease Research and Policy. “The one thing that could save us is mRNA vaccine. The challenge would be if mRNA is banned. This is truly dangerous policy.”

The pushback conflicts with innovations championed by Trump. He assembled tech tycoons at the White House just after his inauguration to announce Stargate, a $500 billion artificial intelligence initiative that could help transform cancer treatment by creating tumor-targeting mRNA vaccines. The fledging partnership between Oracle, SoftBank Corp., and OpenAI, co-founded by Elon Musk, envisions leveraging AI in part to improve health outcomes. Patients would undergo blood tests and AI would be used to find cancer.

Scientists would examine the DNA and RNA (RNA and mRNA serve different functions in a cell) of a specific patient’s tumor to create a vaccine to teach that person’s immune system to target and destroy cells driving cancer growth.

“Imagine early cancer detection, the development of a cancer vaccine for your particular cancer aimed at you, and have that vaccine available in 48 hours,” Oracle co-founder Larry Ellison said at the White House event.

Scores of mRNA clinical trials for cancer vaccines are underway and some have shown dramatic results, cutting the risk of death and recurrence roughly in half for certain patients. In research led by the Yale School of Medicine, for example, patients with advanced kidney cancer remained cancer-free about three years after an mRNA-based treatment in an early-phase trial.

But some politically conservative doctors, lawmakers, and researchers question the safety of mRNA vaccines, especially covid shots made with the technology. Robert F. Kennedy Jr. unsuccessfully petitioned the FDA in 2021 to rescind approval for covid shots and called them “the deadliest vaccine ever made” — a controversial statement that has been refuted.

Now that he’s newly confirmed as Health and Human Services secretary, Kennedy is poised to oversee federal approvals of vaccines, with the power to shape policy such as immunization schedules and appoint vaccine opponents to committees that advise on the approval of shots.

Bloomberg reported late last month that Trump administration health officials were reevaluating a $590 million contract for bird flu shots that the Biden administration awarded to Moderna as part of its push to examine spending on mRNA vaccines.

HHS and White House spokespeople didn’t return emails seeking comment.

Support for an mRNA ban is coming from other sources too. Florida Gov. Ron DeSantis on March 5 urged the Centers for Disease Control and Prevention to stop recommending the covid-19 vaccine for children and called for a state ban on mRNA vaccine mandates. In February, Rep. Thomas Massie (R-Ky.) said on X that the “FDA should immediately revoke approval of these shots,” and Sen. Ron Johnson (R-Wis.) is leading an investigation into the safety of the vaccines. Trump in February signed an order to strip federal funds from schools that require covid shots for attendance.

Vaccine skepticism has become pronounced among Republicans since the pandemic. Four in 10 Republicans who responded to a KFF poll published in January said it was “probably” or “definitely true” that “more people have died from covid-19 vaccines than from the virus itself.” Just a quarter of Republicans reported holding that view in 2023.

The effort is also finding traction at the local level. A district health department outside Boise, Idaho, last year banned its health department from administering covid-19 vaccines, and local lawmakers in Franklin County, Washington, passed a resolution in February against mRNA vaccines.

The ABCs of mRNA

The CDC recommends covid vaccines for anyone 6 months and older, especially seniors and people who are immunocompromised. About 29 million doses had been administered to adults in the 2024-25 season in retail pharmacies and doctors’ offices through Feb. 8, based on federal data.

Given as a shot, mRNA enters muscle cells and teaches them to produce a spike protein found on the surface of a virus. The body’s immune system then targets the spike protein, priming it to identify and fight the virus — in this case, the coronavirus that causes covid. The body’s cells then break down the mRNA and remove it, according to federal health researchers.

More than 13 billion covid vaccines had been administered worldwide as of August 2024.

Researchers say the vaccinations saved countless lives — estimates for the first year alone go as high as 19.8 million — in the throes of a pandemic that had hospitals ordering refrigerated mobile morgues and deliberating over which patients to put on ventilators. Two University of Pennsylvania scientists credited with developing the mRNA technology behind the shots were awarded the Nobel Prize for medicine in 2023.

The FDA says the covid vaccines are safe, with fewer than 1 in 200,000 vaccinated individuals experiencing a severe allergic reaction or heart problems like myocarditis or pericarditis, and the agency notes that “inaccurate information about these vaccines, particularly the mRNA COVID-19 vaccines, continues to circulate.”

While many people hadn’t heard of the mRNA platform until the covid shots were rolled out, it was discovered in the 1960s. The first mRNA flu vaccines were tested in mice in the 1990s. A clinical trial involving direct injection of mRNA to fight cancer occurred in 2008. Clinical trials involving the covid mRNA vaccines involved tens of thousands of volunteers.

Reviews of mortality data showed “no unusual patterns of death were detected that might suggest a potential safety concern,” based on a September 2024 report by a technical working group that provided guidance to the CDC.

But those calling for a ban on all mRNA vaccines say there is a dearth of long-term safety data, and they say covid vaccines by Pfizer-BioNTech and Moderna were hastily approved without proper vetting. They assert without strong evidence that the vaccines cause serious injuries to the heart, nerves, and immune and reproductive systems, and can lead to cancer.

The vaccine has been linked to rare cases of heart inflammation and inflammation of the sac surrounding the heart, although the severity has varied and most patients fully recovered, the CDC says.

“The allegations are beyond reason,” said Anne Schuchat, a career scientist who worked on covid and who twice served stints as acting director of the CDC. “The mRNA covid vaccines were extensively studied after use and do not have those problems.”

“I’m concerned about the whole mRNA technology. I don’t trust anything that fools the body,” said Stephanie Seneff, a computer scientist and anti-vaccine activist at the Massachusetts Institute of Technology. “I’m really glad people are waking up and realizing it’s not the thing to do anymore.”

Vaccines generally work by tricking the body into producing antibodies to fight illnesses.

Pfizer spokespeople didn’t return an email seeking comment. A Moderna spokesperson, Chris Ridley, said legislative efforts to ban or restrict mRNA medicines are largely driven by misunderstandings about their safety profile and mechanism of action. While mRNA-based shots do not modify DNA, for example, that misconception is frequently cited in support of restrictions, Ridley said.

“If enacted, these measures could hinder important research and limit patient access to innovative treatments, potentially delaying life-changing medical advancements,” Ridley said in a written statement.

Networks of Opposition

Groups opposed to the mRNA technology have built a vast and well-funded legal, marketing, and social media network. Members hold conferences to discuss strategies, fund lawsuits against vaccine mandates, and produce reports on the covid vaccines.

As for state legislative efforts, measures introduced this year have varied and their progress has been mixed. Montana’s measure, for instance, was blocked. Idaho lawmakers in February held a hearing on its bill, which calls for a 10-year moratorium on mRNA vaccines. Idaho’s proposal, likely to be amended, as well as Iowa’s and Montana’s have featured criminal penalties for providers who administer all or certain mRNA vaccines. In addition, some state bills, such as legislation in Pennsylvania and Tennessee, focused on the use of the vaccine in livestock and food production.

Various bills are pending in the Texas Legislature to restrict mRNA vaccines in both livestock and humans. South Carolina’s pending bill would require anyone administering certain covid mRNA vaccines to inform patients that the shot is contaminated with fragments of “bacterial plasmid DNA.”

Covid mRNA shots may have minute amounts of residual DNA from production processes but they are heavily degraded and pose no risk, according to the Global Vaccine Data Network, which evaluates vaccine safety concerns.

Speakers at some legislative proceedings have included representatives from Children’s Health Defense, an activist, anti-vaccine group founded by Kennedy.

The Florida surgeon general in January 2024 called for a halt in the use of covid mRNA vaccines. And in Texas, Attorney General Ken Paxton in January moved to appeal a lawsuit he filed claiming Pfizer misrepresented the safety of its mRNA shot.

Efforts to restrict the shots have raised the profile of groups such as the Independent Medical Alliance, which advocates for mRNA-based covid vaccines to be withdrawn from the market.

“We should stop it and test it more before we move forward,” said pediatric cardiologist Kirk Milhoan, a senior fellow at the alliance.

Groups opposed to mRNA shots are pointing to a recent study to urge more caution. Yale University researchers reported in February that they found spike protein still circulating in a subset of individuals with a debilitating, post-vaccination condition. Some of the individuals who experienced chronic illness after getting the shots had detectable levels of spike protein more than 700 days after vaccination. This study was small — 42 participants — and not peer-reviewed.

Its findings also don’t show the spike protein is a health risk or a cause of vaccine injury.

“It’s an initial, provocative study in which you can’t draw conclusions,” said William Schaffner, past medical director of National Foundation for Infectious Diseases. “This is one of the most widely used vaccines around the globe. It’s the furthest thing from an experimental vaccine.”

But what this growing pushback shows, according to some researchers, is that distrust isn’t coming only from fringe groups anymore.

“There are truly amazing mRNA cancer vaccines out there,” said Kate Broderick, chief innovation officer at Maravai LifeSciences, which works on vaccine development. “My fear as a scientist is that it’s been tainted in the public.”

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

How the FDA Lets Chemicals Pour Into America’s Food Supply

Joseph Shea, who sells athletic wear in Myrtle Beach, South Carolina, wonders and worries about the food he eats.

The chemical ingredients with mystifying names. The references on product labels to unspecified natural or artificial flavors. The junk food that fits his budget but feels addictive and makes him feel unwell.

Shea, one of 1,310 people who responded to a poll the health policy research group KFF conducted on health care priorities, said he assumes the FDA is making sure the ingredients are safe.

In many cases, it is not.

The FDA’s restraints on food ingredients are limited and relatively feeble, especially compared with those in Europe, a KFF Health News examination found. There are at least 950 substances in our food that are not permitted in Europe, according to one expert’s estimate, and chemicals linked to health concerns show up in hundreds of products that line the shelves of American supermarkets.

Robert F. Kennedy Jr., the new head of the Department of Health and Human Services, has railed about the risks of food additives for years and has said he wants to end “the mass poisoning of American children.” At a March 6 confirmation hearing, Marty Makary, President Donald Trump’s nominee to head the FDA, expressed concern about foods “with a lot of molecules that do not appear in nature.”

“These are chemicals that the industry insists are safe, a subset of which are concerning,” he said.

A photo of Martin Makary speaking during a Senate HELP Committee hearing concerning his nomination to lead FDA. He is gesturing with his right hand. — At a March 6 confirmation hearing, Marty Makary, President Donald Trump’s nominee to head the FDA, expressed concern about foods “with a lot of molecules that do not appear in nature.”(Eric Harkleroad/KFF Health News)

But the Trump administration’s initial moves to reduce staff at the FDA led the director of its food safety unit, Jim Jones, to resign last month and raised fears among food safety specialists that the administration could weaken oversight.

To a great extent, the FDA leaves it to food companies to determine whether their ingredients and additives are safe. Companies don’t have to tell the FDA about those decisions, and they don’t have to list all ingredients on their product labels.

Though pharmaceutical companies are required to share research on humans with the FDA, the agency is largely blind to what food-makers know about their products.

“The food industry does massive amounts of research that we have no access to,” Robert Califf told a Senate committee in December on his way out as FDA commissioner.

As a result: The FDA’s oversight of food additives is much weaker than its oversight of prescription drugs.

“There is good reason to be concerned about the chemicals that are routinely included in much of our food,” Califf testified.

Food is a big business. American consumers spend almost $1.7 trillion annually on food and beverages, according to Circana, a research and advisory firm.

Yet American food companies keep secret much of what they put in their products.

KFF Health News asked nine of the largest food manufacturers — The Coca-Cola Co., Conagra Brands, General Mills, Kellanova (successor to Kellogg), The Kraft Heinz Co., Mondelēz International, Nestlé, PepsiCo, and Unilever — for the number of ingredients, if any, that go unnamed on their product labels and the names of those ingredients deemed safe without involvement by the FDA, and substances used in their products in the United States but not in Europe, and vice versa.

None provided answers to those questions.

“We focus on the quality of the ingredients that we use, and all comply with applicable regulatory requirements,” Nestlé spokesperson Dana Stambaugh said.

Chemicals such as titanium dioxide and potassium bromate, whose safety has been debated, are allowed in foods in the United States but not in Europe.

Corporations may turn a blind eye to potential dangers, a July 2024 FDA-funded report warned.

Potentially harmful ingredients “are not necessarily required to be named on a product label,” the Reagan-Udall Foundation for the FDA, an adjunct to the agency, said in the report, which was based largely on interviews with representatives of companies across the food supply chain.

“Companies may choose not to track the presence of these ingredients/compounds due to concern about future litigation,” the report said.

Some additives can remain hidden from the public behind such catchall terms as “spices” and “artificial flavors,” as the Center for Science in the Public Interest has reported, or shrouded by other exemptions from disclosure requirements.

And some ingredients that should have been listed on product labels — potential allergens such as milk, wheat, eggs, and dyes — have at times gone undisclosed, according to a series of food recalls. Gaps in oversight have alarmed political leaders on both sides of the aisle, the U.S. Government Accountability Office, watchdog groups such as the CSPI, and academic researchers.

Adding to the concern: the profusion of ultra-processed foods, which use a wide array of chemicals to add flavor and color, extend shelf life, reduce cost, control texture or consistency, and generally tempt people to eat more. Ultra-processed foods now make up 73% of the U.S. food supply, researchers have estimated. Sen. Bernie Sanders of Vermont, the ranking member of the Senate Health, Education, Labor and Pensions Committee, has said there’s growing evidence they are “deliberately designed to be addictive,” contributing to an epidemic of obesity — a rare point of agreement between him and Kennedy.

At his confirmation hearing, Makary said some ingredients cause a chronic, low-grade inflammatory reaction in the gastrointestinal tract. “And what are we doing? We are drugging our nation’s children at scale,” he said.

The KFF poll found that 58% of respondents want the Trump administration to prioritize setting stricter limits on chemicals in the U.S. food supply.

The Consumer Brands Association, which represents many of the largest food-makers, defends the regulatory system as “rigorous,” “evidence-based,” and “proven.” The system enables companies “to innovate to meet consumer demand,” Sarah Gallo, the association’s senior vice president of product policy, said in a statement to KFF Health News.

“Food manufacturers attest to the safety of an ingredient through the development of extensive scientific evidence and third-party expert review,” Gallo added.

More than a decade ago, Pew Charitable Trusts estimated that there were about 10,000 additives allowed in food in the United States — and that the FDA had not reviewed the safety of about 3,000 of them.

“The system is fundamentally broken,” said Thomas Neltner, one of the authors of the Pew study. “It’s so bad, nobody knows — not even FDA knows — what’s in our food.”

Banned Abroad

The FDA allows titanium dioxide to be used to enhance the appearance of foods, among other purposes. According to an Environmental Working Group database, it’s listed as an ingredient in more than 1,900 products, including many candies.

The European Union takes a more cautious approach. In 2021, an EU regulatory panel concluded that titanium dioxide “can no longer be considered as safe when used as a food additive.” The panel said it couldn’t rule out the possibility that titanium dioxide could damage chromosomes.

The FDA allows potassium bromate to be used in baking, and, according to the EWG database, it’s listed as an ingredient in more than 200 products, including bread, buns, and bagels.

Potassium bromate has been banned from food in many countries, including those of the European Union, Canada, India, and Peru. In 2023, California banned it from food effective in 2027. The United Kingdom prohibited it in 1990. The International Agency for Research on Cancer identified it as possibly carcinogenic more than 25 years ago. A joint committee of the United Nations and the World Health Organization identified it as a “genotoxic carcinogen” in 1992.

On its website, the FDA says it has worked with industry to minimize potassium bromate levels and is reviewing the chemical, among others.

The EWG says that it created the database to help consumers make healthier choices and that the raw data on product labels is supplied by Label Insight — which is owned by NielsenIQ, a major provider of data to industry. The EWG has called for tighter regulation of foods.

Based on a review of FDA and European Commission databases, it appears that at least 950 more additives are used in foods in the United States than are allowed in the European Union, said Erik Millstone, an emeritus professor at the University of Sussex in England who has been studying food safety policy since the 1970s.

Direct comparisons are difficult because the two regulatory systems and the way they keep their records differ greatly.

A definitive count is elusive because the FDA doesn’t require industry to inform it of everything used in foods in the United States.

“That kind of casual neglect totally would be unacceptable in Europe,” Millstone said.

‘Several Decades Behind Europeans’

When the FDA formally approves substances for use in food, it can let decades pass without reassessing them — even when subsequent research raises doubts about their safety.

In January, when the FDA banned Red Dye No. 3 from foods, it cited research published in 1987. (The FDA said it had no evidence the dye puts people at risk; invoking one of the stricter consumer protections, it said a law from 1960 prohibits the use of additives found to induce cancer in animals.)

In the European Union, substances used in foods must pass regulatory approval before being introduced. The EU has also required that its regulators reassess all additives that were on the market before Jan. 20, 2009, a process that is ongoing.

“In the FDA, although we have authorization to do post-market reviews, there’s no statutory mandate to do them,” Jones, the former deputy commissioner of the FDA’s Human Foods Program, told a Senate committee in December. “We are several decades behind Europeans and our Canadian counterparts because they have legal mandates to reevaluate chemicals that have been authorized at some point in the past.”

The FDA website lists 19 post-market determinations since 2010 that substances were not “generally recognized as safe.” Four involve chemical constituents of one mushroom and the mushroom itself. Others include an anabolic steroid, caffeinated alcoholic beverages, cannabidiol (CBD), Ginkgo biloba, melatonin, and partially hydrogenated oils.

Meanwhile, trichloroethylene, banned by the Environmental Protection Agency in December as “an extremely toxic chemical known to cause liver cancer, kidney cancer, and non-Hodgkin’s lymphoma,” is still allowed under FDA rules for use as a solvent in the production of foods.

FDA spokesperson Enrico Dinges said the agency will work with new leadership at HHS “to safeguard the food supply through pre-market and post-market safety evaluations of chemicals in the food supply.”

‘The Loophole Swallowed the Law’

The biggest gap in the FDA’s oversight of foods goes back generations.

In 1958, Congress mandated that, before additives could be used in foods, manufacturers had to prove they were safe and get FDA approval. However, Congress carved out an exception for substances “generally recognized as safe,” which came to be known simply as GRAS.

As conceived, GRAS promised regulatory relief for standard ingredients like salt, sugar, vinegar, and baking powder — along with many chemicals.

Over time, “the loophole swallowed the law,” said a 2014 report by Neltner and Maricel Maffini for the Natural Resources Defense Council.

Companies can unilaterally decide their ingredients are already recognized as safe and use them without asking the FDA for permission or even informing the agency.

A better translation of GRAS would be “Generally Recognized as SECRET,” the Natural Resources Defense Council report said.

A federal watchdog reached a similar conclusion. “GRAS substances can be marketed without FDA’s approval or even its knowledge,” the Government Accountability Office warned in 2010.

That spared the FDA from spending time reviewing countless substances.

For advice on whether ingredients are GRAS, companies may convene panels of specialists. The FDA has noted that panel members could be paid by the companies commissioning the review, but, in guidance to industry, it says “such compensation is not itself an unacceptable conflict.”

About 3,000 flavoring ingredients have been deemed GRAS by a panel of scientists working for an industry group, the Flavor and Extract Manufacturers Association of the United States, known as FEMA, said George Southworth, the organization’s executive director.

The scientists on the FEMA panel “adhere to stringent conflict-of-interest policies,” and their GRAS determinations are submitted to the FDA, which includes them in an online database, Southworth said.

Southworth described the panel as independent, and the FEMA website says panel members have never been employees of companies in the food industry.

Asked how many times FEMA’s panel found that a flavoring didn’t meet the test, Southworth wouldn’t say. He indicated that some reviews are called off before a conclusion is reached.

“Publicly reporting these numbers without full context could lead to misinterpretations about the safety of substances,” he added.

Another Way

Food companies have another option: They can voluntarily notify the FDA that they believe their product is GRAS for its intended use and lay out their reasons — giving the FDA a heads up and essentially seeking its blessing.

If they take that route, they don’t have to wait for an answer from the FDA to begin marketing the product, the agency has said.

And they don’t risk much. If the FDA spots weaknesses in a company’s argument or reasons to worry about a chemical’s safety, it routinely calls off its review instead of declaring the substance unsafe.

FDA records posted on the agency’s website show that the FDA often coaches companies to ask the agency to cease its evaluation. That, too, leaves the company free to sell the product, food watchdogs said.

For companies that voluntarily run their products past the FDA, victory is a letter saying the agency has no questions.

But if companies market products as “generally recognized as safe” without firm grounds, they run the risk that the FDA could one day take enforcement action, such as issuing a warning or stopping sales. That’s if the FDA notices.

Psyched Out

On March 8, 2022, a Canadian company, Psyched Wellness, issued a news release saying it had a green light to market products in the United States.

An “independent review panel of scientific experts” concluded that an extract the company developed, AME-1, was “Generally Recognized As Safe,” paving the way for it to be sold in bulk and used as an ingredient, the company said.

The company described the panel’s judgment as a successful “certification” and “a key milestone.” The extract was derived from a hallucinogenic mushroom, Amanita muscaria, which the company said “has incredible healing and medicinal powers.” As the company later put it in a news release, it had obtained “self-Gras status.”

A photo of an Amanita muscaria mushroom growing in the wild. It is red with white spots. — The *Amanita muscaria* mushroom.(Moment/Getty Images)

In June 2024, the company announced that it would soon release Amanita muscaria watermelon gummies.

However, the FDA later took issue with the company and its product.

In a memo dated Sept. 9, 2024, an FDA toxicologist said Psyched Wellness’ claim of GRAS certification was false. The firm failed to show that its extract was generally recognized as safe, the FDA memo said.

Speaking of the mushroom, its extracts, and its known “pharmacologically active constituents,” the FDA memo posted on the agency’s website said they have “potential for serious harm and adverse effects on the central nervous system.”

The FDA was focusing on the mushroom against the backdrop of a spate of medical problems linked to another company’s “Diamond Shruumz” brand chocolate bars, gummies, and infused cones. When it recalled those products in June 2024, that other company announced that a chemical found in Amanita mushrooms was a possible cause of symptoms, including seizures and loss of consciousness.

The FDA memo discussed that recall and said one death and 30 hospitalizations might have been related.

The memo did not connect Psyched Wellness to the outbreak or the Diamond Shruumz products.

A screenshot of an FDA page showing various Diamond Shruumz products with text underneath that shows reports of hospitalizations and potential deaths associated with their products. — In June 2024, Prophet Premium Blends recalled Diamond Shruumz infused cones, chocolate bars, and gummies. They contained a chemical found in *Amanita* mushrooms, which could cause symptoms such as seizures and loss of consciousness, the recall announcement said. The FDA later posted updates and findings of an investigation along with pictures of Diamond Shruumz products, shown above. Against the backdrop of the recall, the FDA posted a memo that declared false an announcement by another company, Psyched Wellness, that its *Amanita muscaria* extract was generally recognized as safe.(Screengrab of an FDA webpage)

The chief executive of Psyched Wellness, Jeffrey Stevens, did not respond to an interview request or written questions.

As recently as Feb. 1, Psyched Wellness said in a securities filing that it will “continue to market its products in the U.S. using the Self-GRAS designation.”

‘Probably Poisoning Us’

If food ingredients cause acute reactions — sending people to emergency rooms, for example — the potential dangers may be relatively easy to identify, and regulatory action might naturally follow. Some critics of the system say they worry more about health effects that could take years or decades to develop.

Then, when it’s too late, it could be hard to trace the harm to any particular ingredient.

All that leaves Joseph Shea of Myrtle Beach in a tough spot.

For a while, Shea tried shopping at a market that has a lot of organic offerings, he said in an interview. That proved too expensive.

Shea said the entire picture is “incredibly frustrating.”

“They’re probably poisoning us, and we don’t know,” he said. “We’ll figure it out 30 years down the road when we get sick.”

Marty Makary, Often Wrong as Pandemic Critic, Is Poised To Lead the FDA He Railed Against

Panelists at a covid conference last fall were asked to voice their regrets — policies they had supported during the pandemic but had come to see as misguided. Covid contact tracing, one said. Closing schools, another said. Vaccine mandates, a third said.

When Marty Makary’s turn came, the Johns Hopkins University surgeon said, “I can’t think of anything,” adding, “The entire covid policy of three to four years felt like a horror movie I was forced to watch.”

It was a characteristic response for Makary, President Donald Trump’s nominee to lead the Food and Drug Administration, who looks set to be confirmed after a Senate committee hearing on Thursday. A decorated doctor and a brash critic of many of his medical colleagues, Makary drew Trump’s attention during the pandemic with frequent appearances on Fox News shows such as “Tucker Carlson Tonight,” in which he excoriated public health officials over their handling of covid.

Many former FDA officials and scientists with knowledge of the agency are optimistic about Makary — to a degree.

“He’s a world-class surgeon, and he has health policy expertise,” said Jennifer Nuzzo, a Brown University professor of epidemiology and former colleague of Makary’s at Johns Hopkins. “If you have pancreatic cancer, he’s the person you want to operate on you. The university is probably losing a lot of money to not have him doing that work.”

His critics say he at times exaggerated the harms of the covid vaccine and undersold the dangers of the virus, contributing to a pandemic narrative that led many Americans to shun the shots and other practices intended to curb transmission and reduce hospitalizations and deaths.

Should he take the reins at the FDA, transitioning from gadfly to the head of an agency that regulates a fifth of the U.S. economy, Makary would have to engage in the thorny challenges of governing.

“Makary spent the pandemic raving against the medical establishment as if he were an outsider, which he wasn’t,” said Jonathan Howard, a New York City neurologist and the author of “We Want Them Infected,” a book that criticizes Makary and other academics who opposed government policies. “Now he really is the establishment. Everything that happens is going to be his responsibility.”

At his confirmation hearing, Makary sounded a lower-key tone, extolling the FDA’s professional staff and promising to apply good science and common sense in the service of attacking chronic disease in the U.S., including by studying food additives and chemicals that could be contributing to poor health.

“We need more humility in the medical establishment. You have to be willing to evolve your position as new data comes in,” he testified. What makes a great doctor “is not how much you know; it’s your humility and your willingness to learn, as you go, from patients.”

Colleagues have applauded Makary’s skill and intelligence as a surgeon and medical policy thinker. He contributed to a 2009 surgery checklist believed to have prevented thousands of mistakes and infections in operating rooms. He wrote a widely cited 2016 paper claiming that medical errors were the third-leading cause of death in the United States, although some researchers said the assertion was overblown. He’s also founded or been a director for companies and said in the hearing that a surgical technique he invented eventually could help cure diabetes.

Humility, however, has not been Makary’s most obvious trait.

During the pandemic, he took to op-eds and conservative media with controversial positions on public health policy. Some proved astute, while others look less prescient in hindsight.

In December 2020, Makary defied established scientific knowledge and said that vaccination of 20% of the population would be enough to create “herd immunity.” In a February 2021 Wall Street Journal piece, he predicted that covid would virtually disappear by April because so many people would have become immune through infection or vaccination. The U.S. death toll from covid stood at 560,000 that April, with an additional 650,000 deaths to come. In June 2021, he said he had been unable to find evidence of a single covid death of a previously healthy child. By then there were many reports of such deaths, although children were much less likely than older people to suffer severe disease.

In February 2023, Makary testified in Congress that the lab-leak theory of covid’s origin was a “no brainer,” a surprisingly unequivocal statement for a scientist discussing a scientifically unresolved issue.

Some public health officials felt Makary gratuitously attacked authorities working in difficult circumstances.

“He went from being a pretty reasonable person to saying a lot of things that were over the top and unnecessary,” said Ashish Jha, dean of the Brown University School of Public Health, who was the White House covid-19 response coordinator under President Joe Biden.

And while almost everyone involved in fighting covid has admitted to getting things wrong during the pandemic, Jha said, “I never had any sense from Marty that he did.”

Makary did not respond to requests for comment.

Makary accused Biden administration officials of ignoring emerging evidence that previous infection with covid could be as or more effective against future infection than vaccination. While he was probably right, Nuzzo said, his statements seemed to encourage people to get infected.

“It’s reasonable to say that vaccine mandates weren’t the right approach,” she said. “But you can also understand that people were trying to blindly stumble our way out of the situation, and some people thought vaccine mandates would be expedient.”

At Johns Hopkins, for example, Nuzzo opposed a booster mandate for the campus in 2022 but understood the final decision to require it. School authorities were intent on bringing students back to campus and worried that outbreaks would force them to shut down again, she said.

“You can argue that seat belt laws are bad because they impinge on civil rights,” Howard said. “But a better thing to do would be to urge people to wear seat belts.”

Makary’s statements had “no grace,” he said. “These were people dealing with an overwhelming virus, and he constantly accused them of lying.”

Several public health officials were particularly upset by the way Makary cast aspersions on the Centers for Disease Control and Prevention’s vaccine safety program. In a Jan. 16, 2023, appearance on Tucker Carlson’s Fox News show, Makary said the CDC had “tried to quickly downplay” evidence of an increased risk of stroke in Medicare beneficiaries who got a covid booster. In fact, the CDC had detected a potential signal for additional strokes in one database, and in the interest of transparency it released that information, Nuzzo said. Further investigation found that there was no actual risk.

During Thursday’s hearing, Makary’s pandemic views were mostly left unexplored, but Democratic and Republican senators repeatedly probed for his views on the abortion drug mifepristone, which became easier to use without direct medical supervision because of a 2021 FDA ruling. Many Republicans want to reverse the FDA ruling; Democrats say there are reams of evidence that support the drug’s safety when taken by a woman at home.

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Makary tried to satisfy both parties. He told Sen. Maggie Hassan (D-N.H.) he would be led by science and had no preconceived ideas about mifepristone’s safety. Questioned by Republican Bill Cassidy, chair of the Health, Education, Labor and Pensions Committee and an abortion foe, he said he would examine ongoing data on the drug from the FDA’s risk evaluation system, which gathers reports from the field.

The abortion pill question exemplifies the kind of dilemmas Makary will face at the FDA, Jha said.

“He’s going to have to decide whether he listens to the scientists in his administration, or his boss, who often disagrees with science,” he said. “He’s a smart, thoughtful guy and my hope is he’ll find his way through.”

“The two most important organs for the FDA commissioner are the brain and the spine,” said former FDA deputy commissioner Joshua Sharfstein. “The spine because there’s attempted influence coming from many directions, not just political but also commercial and from multiple advocacy communities. It’s very important to stand up for the agency’s success.”

Medicaid Advocates Say Critics Use Loaded Terms To Gain Edge in Congressional Debate

In Washington’s debate over enacting steep funding cuts to Medicaid, words are a central battleground.

Many Republican lawmakers and conservative policy officials who want to scale back the joint state-federal health program are using charged language to describe it. Language experts and advocates for Medicaid enrollees say their word choice is misleading and aims to sway public opinion against the popular, 60-year-old government program in a bid to persuade Congress to cut funding.

Republicans such as Sen. Bill Cassidy of Louisiana, chair of the Senate Health, Education, Labor and Pensions Committee, are deploying provocative terms such as “money laundering,” rebranding a decades-old — and legal — practice known as provider taxes, which most states use to gain additional federal Medicaid funds.

They say it’s “discrimination” that the federal government matches state funding at a higher rate for adults covered by the Affordable Care Act’s Medicaid expansion than it does for other enrollees, including children, pregnant women, and disabled people.

And many Republicans, including House Speaker Mike Johnson and the director of the Office of Management and Budget, Russell Vought, have described adults who gained Medicaid coverage through the ACA expansion as “able-bodied” as they push for federal work requirements.

The term implies they have less need for government assistance than other Medicaid recipients — even though some have health conditions or caregiving responsibilities that make holding full-time jobs difficult.

“Able-bodied adults without dependents are better off with jobs than with hand-outs, and so are their communities and American taxpayers,” Sen. John Kennedy (R-La.) said in a press release in February.

To be sure, political spin is a practice older than Washington, and Democrats are no spectators in the war of words. But what’s striking about the latest GOP effort is that it is focused on cutting a health program for the nation’s poorest residents to pay, in part, for tax cuts for wealthier Americans.

A KFF poll conducted last month and released Friday found that support for proposed changes to Medicaid can wax or wane depending on what individuals are told about the program.

For example, the poll found about 6 in 10 adults support work requirements, with the same portion of respondents believing incorrectly that most working-age adults on Medicaid are unemployed. In fact, about two-thirds work.

KFF’s poll also showed that support for work requirements drops to about 3 in 10 adults when those who initially supported them hear that most Medicaid enrollees are already working and that, if the requirements were implemented, many would risk losing coverage because of the burden of proving eligibility.

When respondents initially opposed to work requirements were told they could allow Medicaid to be reserved for groups like the elderly, people with disabilities, and low-income children, support for them increased to 77%.

Steven Mintz, a history professor at the University of Texas, said the Medicaid debate likely will be won not on the facts, but instead on which party can describe it in terms that gain the most public support. “Words are wielded as weapons,” he said.

Republicans’ word choices are designed to appeal to people’s prejudices about Medicaid, he said, adding that “loaded” terms help divert attention from a detailed policy discussion.

“Words help reinforce a position that people already lean toward,” he said.

Sara Rosenbaum, professor emerita of health law and policy at George Washington University, said conservatives who have long tried to shrink Medicaid have an obvious motivation.

“These people spend their lives trying to ruin the program by searching for the newest slogans, the newest quips, and the newest nonsensical monikers that they think somehow will persuade Congress to completely upend the program and take benefits away from tens of millions of people,” she said.

Medicaid and the closely related Children’s Health Insurance Program cover nearly 80 million low-income and disabled people — roughly 1 in 5 Americans. Enrollment and spending soared in the past decade due largely to the covid pandemic and the decision by more states to expand Medicaid under the ACA. Polling shows the program is nearly as popular as Medicare, the health program primarily for those 65 or older — with about 3 in 4 Americans holding a favorable opinion of Medicaid.

The House of Representatives’ budget resolution, a blueprint that narrowly passed Feb. 25 with no Democratic support, calls for cuts of at least $880 billion over a decade largely from federal health and energy programs. A separate Senate resolution with no such cuts — so far — is also in play. Any proposal would need to pass both chambers.

Democrats fear most of those cuts will come from Medicaid. Trump has vowed not to touch Medicare, leaving few if any alternatives. He has said he would “cherish” Medicaid and go after only waste, fraud, and abuse in the program without offering details on how those would be interpreted — and he endorsed the House’s blueprint calling for cuts.

States and the federal government share in the financing of Medicaid, with the federal government paying from 50% to 77% of the cost of providing services to most beneficiaries. The rate is 90% for beneficiaries receiving coverage through their state’s Medicaid expansion program.

The federal matching rate varies based on a state’s per capita income relative to the national average; states with lower per capita incomes have higher matching rates. The remaining share of program funding comes from state and local sources.

The words “discrimination” and “money laundering” have been used in reports from the Paragon Health Institute, a conservative think tank led by a former Trump adviser, Brian Blase. Two former Paragon executives now advise Trump, and a former Paragon analyst advises Johnson.

Blase said there’s no ulterior motive in the group’s word choices. “This is us trying to describe the issue in a way that makes the most sense to members of Congress and policymakers,” he said.

Paragon analysts have argued for ending the federal government’s “discrimination” in matching state dollars for those covered under the ACA’s Medicaid expansion at a higher rate than for other enrollees. They also propose giving states a set amount of federal money per year for the program, rather than the open-ended federal funds that always have been a hallmark of Medicaid.

One way states raise funds for their share of Medicaid spending is through provider taxes that hospitals or nursing homes pay. States often reimburse the providers through the extra federal money.

Blase acknowledges that provider taxes used by states to draw down more federal money — which Paragon has referred to as “money laundering” — are legal. He said calling the practice a “tax” is misleading because the providers financially benefit from it.

“Money laundering is the best term we can think of for the schemes providers and states come up with to get federal reimbursement for artificial expenditures that benefits states and providers,” he said.

Joan Alker, executive director of the Center for Children and Families at Georgetown University, defended provider taxes as a legal way states raise money to cover low-income people. She noted most states with provider taxes are controlled at least partly by Republicans.

Alker rejected the notion that enhanced funding to expand enrollment is “discrimination.” The ACA included the higher rates for covering more low-income enrollees because that was the only way states could afford it, she said.

Without providing a specific example, Blase said advocates have said cuts would “leave people dying in the streets.”

During a brief funding freeze to Medicaid providers in January, Sen. Ron Wyden of Oregon, the top Democrat on the Senate Finance Committee, said, “This is a blatant attempt to rip away health insurance from millions of Americans overnight and will get people killed.”

She Co-Founded the Office That Became DOGE. Now, She Sees ‘Irresponsible Transformation.’

Jennifer Pahlka is perhaps best known as the founder of Code for America, a widely respected nonprofit that helped formalize the principles of civic tech, a movement leveraging design and technology expertise to improve public access to government services and data. Notably, the organization reimagined the online application for California’s food assistance program, which once had one of the country’s lowest participation rates, transforming it from a 45-minute endeavor requiring a computer to a mobile-friendly process that can be completed in under 10 minutes.

Pahlka’s 2023 book, “Recoding America,” outlines her views on why the government so often fails to achieve its policy goals in the digital age. In it, she argues that “archaeological” layers of policies, regulations, and processes center the bureaucracy, not the public.

As a deputy chief technology officer under President Barack Obama, Pahlka helped launch the United States Digital Service, a unit within the White House that paired top technology talent with federal agencies to make government services more efficient and user-friendly. It was the predecessor to Elon Musk’s “Department of Government Efficiency,” or DOGE. On Feb. 25, 21 employees resigned from the renamed service, saying they would not “carry out or legitimize DOGE’s actions.”

Pahlka believes bolstering the government’s tech chops and relying less on contractors could save taxpayer dollars. However, as the administration looks to slash spending, she worries that DOGE’s “very indiscriminate” approach to date could wind up harming people who rely on public benefits such as Medicaid.

KFF Health News spoke to Pahlka, now a senior fellow at the nonpartisan Niskanen Center, about what she sees as “irresponsible transformation” and how best to fast-track government reform. This interview, conducted in mid-February, has been edited for length and clarity.

Q: You’ve made a career of bringing Silicon Valley talent into the public sector to improve the delivery of government services. What have you learned from mixing tech with government?

A: It’s really easy to look from the outside of government and say, “That’s crazy it works that way. I’m going to go in and fix it.” And when you get in, it’s that way for a reason, and you gain so much more empathy and sympathy for people in public service. You realize that people who you thought were obstructionists actually are just trying to do their jobs.

Civil servants deserve respect. We’re just not transforming government fast enough.

Q: What are the key changes you think would speed things up?

A: One, you have to be able to hire the right people and fire the wrong ones.

You also have to be able to reduce procedural bloat. When the unemployment insurance crisis hit, every state’s labor commissioner got called in front of the legislature and yelled at for the backlog. Rob Asaro-Angelo in New Jersey brought boxes and boxes of paper — 7,119 pages of active regs. And when they kept yelling, he kept pointing them to them and saying, “You can’t be scalable with 7,119 pages of regulations.”

The third pillar is investment in digital and data infrastructure.

And the fourth is closing the loop between policy and implementation. In California, you get thousands of bills introduced every year in the legislature. We don’t need that many. We need legislators to follow up on bills that have already been passed, see if they’re working, tweak them if they’re not. They need to go into agencies and say, “If this is hard for you to do, what mandates and constraints can we remove so you can make this a priority?”

Q: Civic technologists pushed through layers of bureaucracy in California to boost participation in the Supplemental Nutrition Assistance Program. How did that process unfold?

A: When we started working on California’s SNAP application, it was 212 questions. It started from, “What are all the policies that we need to comply with?” Instead of, “How would this be easy for someone to use?”

I think it can always be helpful to have fresh eyes on something. If those eyes have experience in consumer technology, they’re going to see through that lens of, “How do we deliver something that is easy for people to use?”

Q: House Republicans are considering deep financial cuts to safety net programs such as SNAP and Medicaid, and restricting eligibility. In recent years, organizations including Code for America have received hundreds of millions in private funding to modernize social safety net programs and make them more accessible. How optimistic do you feel that these efforts will progress over the next four years?

A: Let me say what I hope for: I hope that the states now get that when we don’t transform fast enough in a responsible way, you are inviting irresponsible transformation. I hope this gives governors and mayors all over the country a kick in the butt to say, “Whatever we have done so far, it has been insufficient. We really need to work on the capacity of our state to deliver in a modern era.”

Q: What do you mean by irresponsible transformation?

A: Maybe there is good stuff that DOGE is doing now that I don’t know about or good stuff that they will do in the future. I don’t have a crystal ball. But I do see that there is a huge difference between illegally stopping payments without Congress’ permission and making an IT system work better.

Q: To that point, DOGE’s purview seems to have shifted from modernizing government systems to, ostensibly, rooting out fraud, waste, and abuse. What do you make of that change?

A: I think the thesis that better technology could reduce waste, fraud, and abuse is sound, but you want to see both better use of technology to ensure that taxpayer dollars aren’t wasted, and that people who need their benefits are going to get them. You need a North Star that includes both of those things.

Q: And you’re not seeing that in DOGE?

A: They have not expressed great care for what damage can happen to people who rely on benefits. I’m just seeing large, very indiscriminate cuts.

They have signaled that government needs its own internal tech capacity and that it’s shocking how reliant on contractors our government is. I would agree with that.

We have a very dysfunctional government technology contracting ecosystem. There’s this set of big firms that we’ve outsourced our technology to that get to charge taxpayers a shocking amount of money to implement changes.

Q: Thousands of federal workers are now being pushed out. In light of your view that we outsource too much, what are your feelings on that?

A: We’ve overrelied on the idea that we should bring people in from the outside and underinvested in helping career civil servants to do transformation work themselves.

When I wrote my book, the biggest hero was Yadira Sánchez, who I think now has been at the Centers for Medicare & Medicaid Services for 25 years. She’s a leader who really pushes for the kinds of decisions that are going to make a service for doctors that’s going to be usable. She gets pushback and comes back and says, “If you make that decision, we are going to alienate doctors. They’re going to stop taking Medicare patients. And we’ve got to do it this different way.”

We need more of her, and we need to empower lots of people like that.

KFF Health News’ ‘What the Health?’: The State of Federal Health Agencies Is Uncertain

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Can the Trump administration refuse to spend money appropriated through Congress by firing federal workers and canceling existing contracts? And if the courts say it cannot, will the administration obey those directives? That key confrontation crept closer this week as the Supreme Court weighed in, suggesting the federal government could not refuse to pay for services already provided.

Meanwhile, the measles outbreak that started in Texas continues to expand, while the secretary of Health and Human Services, Robert F. Kennedy Jr., a longtime anti-vaccine activist, offers a less-than-full-throated endorsement of the vaccine that has long checked the spread of measles in the U.S.

This week’s panelists are Julie Rovner of KFF Health News, Stephanie Armour of KFF Health News, Joanne Kenen of the Johns Hopkins University School of Public Health and Politico Magazine, and Lauren Weber of The Washington Post.

Also this week, Rovner interviews Sandy West, who reported and wrote the latest KFF Health News’ “Bill of the Month” feature, about a runner hit by a car — and then by a very expensive ambulance bill.

Among the takeaways from this week’s episode:

The Supreme Court rejected the Trump administration’s attempt to continue its freeze on foreign aid. One notable lesson of the administration’s efforts to shutter the U.S. Agency for International Development is that health spending abroad not only supports foreign communities but also helps protect Americans from infectious diseases.
Meanwhile, Jay Bhattacharya, Trump’s pick to lead the National Institutes of Health, appeared before a Senate committee this week as big changes at the agency rippled through the nation. NIH grants pump key research funding into every state, and turning off funding is expected to have significant economic ramifications. Some universities are pausing or revoking graduate student acceptances, potentially shutting down research avenues and a key source of future educators.
As expected, the Trump administration said it would no longer pursue a legal effort to block Idaho’s abortion ban for its lack of compliance with the federal Emergency Medical Treatment and Active Labor Act, known as EMTALA. But the state ban remains on hold because the state’s largest hospital system has stepped in to replace the federal government in challenging it.

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

Julie Rovner: KFF Health News’ “Future of Cancer Coverage for Women Federal Firefighters Uncertain Under Trump,” by Kylie Mohr.

Joanne Kenen: ProPublica’s “How Illinois’ Hands-Off Approach to Homeschooling Leaves Children at Risk,” by Molly Parker and Beth Hundsdorfer, Capitol News Illinois.

Stephanie Armour: The New York Times’ “Organ Transplant System ‘in Chaos’ as Waiting Lists Are Ignored,” by Brian M. Rosenthal, Mark Hansen, and Jeremy White.

Lauren Weber: The Washington Post’s “Amid West Texas Measles Outbreak, Vaccine Resistance Hardens,” by Fenit Nirappil and Elana Gordon.

Also mentioned in this week’s podcast:

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.

For Seniors With Hoarding Disorder, a Support Group Helps Confront Stigma and Isolation

A dozen people seated around folding tables clap heartily for a beaming woman: She’s donated two 13-gallon garbage bags full of clothes, including several Christmas sweaters and a couple of pantsuits, to a Presbyterian church.

A closet cleanout might not seem a significant accomplishment. But as the people in this Sunday-night class can attest, getting rid of stuff is agonizing for those with hoarding disorder.

People with the diagnosis accumulate an excessive volume of things such as household goods, craft supplies, even pets. In extreme cases, their homes become so crammed that moving between rooms is possible only via narrow pathways.

These unsafe conditions can also lead to strained relationships.

“I’ve had a few relatives and friends that have condemned me, and it doesn’t help,” said Bernadette, a Pennsylvania woman in her early 70s who has struggled with hoarding since retiring and no longer allows guests in her home.

People who hoard are often stigmatized as lazy or dirty. NPR, Spotlight PA, and KFF Health News agreed to use only the first names of people with hoarding disorder interviewed for this article because they fear personal and professional repercussions if their condition is made public.

As baby boomers age into the group most affected by hoarding disorder, the psychiatric condition is a growing public health concern. Effective treatments are scarce. And because hoarding can require expensive interventions that drain municipal resources, more funding and expertise is needed to support those with the diagnosis before the issue grows into a crisis.

For Bernadette, the 16-week course is helping her turn over a new leaf.

The program doubles as a support group and is provided through Fight the Blight. The Westmoreland County, Pennsylvania, organization started offering the course at a local Masonic temple after founder Matt Williams realized the area lacked hoarding-specific mental health services.

A photo of a man lifting a trash bag filled with clutter into a box truck. — Tristen Williams helps remove clutter from the home of someone with hoarding disorder in Greensburg, Pennsylvania. The homeowner asked for help with the cleanout after attending a course and support group offered by the nonprofit Fight the Blight, founded by Williams’ father.(Matt Williams/Fight the Blight)

Fight the Blight uses a curriculum based on cognitive behavioral therapy to help participants build awareness of what fuels their hoarding. People learn to be more thoughtful about what they purchase and save, and they create strategies so that decluttering doesn’t become overwhelming.

Perhaps more importantly, attendees say they’ve formed a community knitted together through the shared experience of a psychiatric illness that comes with high rates of social isolation and depression.

“You get friendship,” said Sanford, a classmate of Bernadette’s.

After a lifetime of judgment, these friendships have become an integral part of the changes that might help participants eventually clear out the clutter.

Clutter Catches Up to Baby Boomers

Studies have estimated that hoarding disorder affects around 2.5% of the general population — a higher rate than schizophrenia.

The mental illness was previously considered a subtype of obsessive-compulsive disorder, but in 2013 it was given its own diagnostic criteria in the Diagnostic and Statistical Manual of Mental Disorders, the DSM-5.

The biological and environmental factors that may drive hoarding are not well understood. Symptoms usually appear during the teenage years and tend to be more severe among older adults with the disorder. That’s partly because they have had more time to acquire things, said Kiara Timpano, a University of Miami psychology professor.

“All of a sudden you have to downsize this huge home with all the stuff and so it puts pressures on individuals,” she said. In Bernadette’s case, her clutter includes a collection of VHS tapes, and spices in her kitchen that she said date back to the Clinton administration.

But it’s more than just having decades to stockpile possessions; the urge to accumulate strengthens with age, according to Catherine Ayers, a psychiatry professor at the University of California-San Diego.

Researchers are working to discern why. Ayers and Timpano theorize that age-related cognitive changes — particularly in the frontal lobe, which regulates impulsivity and problem-solving — might exacerbate the disorder.

“It is the only mental health disorder, besides dementia, that increases in prevalence and severity with age,” Ayers said.

A photo of a woman filling a trash bag in a basement surrounded by clutter and debris. — Eva Williams, wife of Fight the Blight founder Matt Williams, works to clean the basement of someone with hoarding disorder.(Matt Williams/Fight the Blight)

As the U.S. population ages, hoarding presents a growing public health concern: Some 1 in 5 U.S. residents are baby boomers, all of whom will be 65 or older by 2030.

This population shift will require the federal government to address hoarding disorder, among other age-related issues that it has not previously prioritized, according to a July report by the Democratic staff of the U.S. Senate Special Committee on Aging, chaired then by former Sen. Bob Casey (D-Pa.).

Health Hazards of Hoarding

Clutter creates physical risks. A cramped and disorderly home is especially dangerous for older adults because the risk of falling and breaking a bone increases with age. And having too many things in one space can be a fire hazard.

Last year, the National Fallen Firefighters Foundation wrote to the Senate committee’s leadership that “hoarding conditions are among the most dangerous conditions the fire service can encounter.” The group also said that cluttered homes delay emergency care and increase the likelihood of a first responder being injured on a call.

The Bucks County Board of Commissioners in Pennsylvania told Casey that hoarding-related mold and insects can spread to adjacent households, endangering the health of neighbors.

Due to these safety concerns, it might be tempting for a family member or public health agency to quickly empty someone’s home in one fell swoop.

That can backfire, Timpano said, as it fails to address people’s underlying issues and can be traumatic.

“It can really disrupt the trust and make it even less likely that the individual is willing to seek help in the future,” she said.

It’s more effective, Timpano said, to help people build internal motivation to change and help them identify goals to manage their hoarding.

For example, at the Fight the Blight class, a woman named Diane told the group she wanted a cleaner home so she could invite people over and not feel embarrassed.

Sanford said he is learning to keep his documents and record collection more organized.

Bernadette wants to declutter her bedroom so she can start sleeping in it again. Also, she’s glad she cleared enough space on the first floor for her cat to play.

“Because now he’s got all this room,” she said, “he goes after his tail like a crazy person.”

Ultimately, the home of someone with hoarding disorder might always be a bit cluttered, and that’s OK. The goal of treatment is to make the space healthy and safe, Timpano said, not to earn Marie Kondo’s approval.

Lack of Treatment Leaves Few Options

A 2020 study found that hoarding correlates with homelessness, and those with the disorder are more likely to be evicted.

Housing advocates argue that under the Fair Housing Act, tenants with the diagnosis are entitled to reasonable accommodation. This might include allowing someone time to declutter a home and seek therapy before forcing them to leave their home.

But as outlined in the Senate aging committee’s report, a lack of resources limits efforts to carry out these accommodations.

Hoarding is difficult to treat. In a 2018 study led by Ayers, the UCSD psychiatrist, researchers found that people coping with hoarding need to be highly motivated and often require substantial support to remain engaged with their therapy.

The challenge of sticking with a treatment plan is exacerbated by a shortage of clinicians with necessary expertise, said Janet Spinelli, the co-chair of Rhode Island’s hoarding task force.

A photo of a box truck's cargo area filled with boxes and other items. — Items removed by nonprofit Fight the Blight from a home in Greensburg, Pennsylvania.(Matt Williams/Fight the Blight)

Could Changes to Federal Policy Help?

Casey, the former Pennsylvania senator, advocated for more education and technical assistance for hoarding disorder.

In September, he called for the Substance Abuse and Mental Health Services Administration to develop training, assistance, and guidance for communities and clinicians. He also said the Centers for Medicare & Medicaid Services should explore ways to cover evidence-based treatments and services for hoarding.

This might include increased Medicare funding for mobile crisis services to go to people’s homes, which is one way to connect someone to therapy, Spinelli said.

Another strategy would involve allowing Medicaid and Medicare to reimburse community health workers who assist patients with light cleaning and organizing; research has found that many who hoard struggle with categorization tasks.

Williams, of Fight the Blight, agrees that in addition to more mental health support, taxpayer-funded services are needed to help people address their clutter.

When someone in the group reaches a point of wanting to declutter their home, Fight the Blight helps them start the process of cleaning, removing, and organizing.

The service is free to those earning less than 150% of the federal poverty level. People making above that threshold can pay for assistance on a sliding scale; the cost varies also depending on the size of a property and severity of the hoarding.

Also, Spinelli thinks Medicaid and Medicare should fund more peer-support specialists for hoarding disorder. These mental health workers draw on their own life experiences to help people with similar diagnoses. For example, peer counselors could lead classes like Fight the Blight’s.

Bernadette and Sanford say courses like the one they enrolled in should be available all over the U.S.

To those just starting to address their own hoarding, Sanford advises patience and persistence.

“Even if it’s a little job here, a little job there,” he said, “that all adds up.”

This article is from a partnership that includes Spotlight PA, NPR, and KFF Health News.

Spotlight PA is an independent, nonpartisan, and nonprofit newsroom producing investigative and public-service journalism that holds power to account and drives positive change in Pennsylvania. Sign up for its free newsletters.

To Patients, Parents, and Caregivers, Proposed Medicaid Cuts Are a Personal Affront

TUSTIN — Cynthia Williams is furious with U.S. House Republicans willing to slash Medicaid, the government-run insurance program for people with low incomes or disabilities.

The 61-year-old Anaheim resident cares for her adult daughter, who is blind, and for her sister, a military veteran with severe post-traumatic stress disorder and other mental health conditions. Medi-Cal, the state’s version of Medicaid, pays Williams to care for them, and she relies on that income, just as her sister and daughter depend on her.

“Let’s be real. We shouldn’t have to be here tonight,” Williams told a raucous standing-room crowd of over 200 people at a recent town hall. “We should be home, spending time with our loved ones and our families, but we’re here. And we’re here to fight, because when politicians try to take away our health care, we don’t have the option to sit back and let it happen.”

The House last week approved a Republican budget plan that could shrink Medicaid spending by $880 billion over 10 years, only partially paying for an extension of expiring tax cuts from President Donald Trump’s first term, plus some new ones he has promised, totaling as much as $4.5 trillion.

A spending cut of that magnitude would have a huge impact in California, with nearly 15 million people — more than a third of the population — on Medi-Cal. Over 60% of Medi-Cal’s $161 billion budget comes from Washington.

Attendees sitting in a crowded room at a town hall event applaud. — Attendees applaud speakers during the town hall at the Clifton C. Miller Community Center in Tustin on Feb. 20.(Jenna Schoenefeld for KFF Health News)

Williams was among about a dozen providers, patient advocates, disabled people, and family members who stood up one after the other to tell their stories. Rep. Young Kim, a Republican whose district includes this relatively affluent Orange County city, declined an invitation for her or a staff member to attend. But her constituents delivered their message loud and clear to her and the other Republicans in Congress: Hands off Medicaid.

Josephine Rios, a certified nursing assistant at a Kaiser Permanente surgical center in Irvine, said her 7-year-old grandson, Elijah, has received indispensable treatments through Medi-Cal, including a $5,000-a-month medication that controls his seizures, which can be life-threatening. Elijah, who has cerebral palsy, is among the more than 50% of California children covered by Medi-Cal.

“To cut Medicaid, Medi-Cal, that’s like saying he can’t live. He can’t thrive. He’s going to lie in bed and do nothing,” Rios said. “Who are they to judge who lives and who doesn’t?”

A woman wearing glasses stands at a podium and points her finger as she speaks. — Josephine Rios, a Kaiser Permanente employee, worries about grandson Elijah, who has cerebral palsy and relies on Medicaid for his care, including a $5,000-a-month medication to control seizures that can be life-threatening. Here, Rios speaks at the town hall in Tustin.(Jenna Schoenefeld for KFF Health News)

Two thirds of Californians across party lines oppose cuts to Medi-Cal, according to a new survey by the California Health Care Foundation and NORC at the University of Chicago.

The town hall here was one of three organized late last month by “Fight for Our Health,” a coalition of health advocacy groups and unions, to target Republican House members whose California districts are considered politically competitive. The other two were in Bakersfield, part of which is represented by Rep. David Valadao, and Corona, home to Rep. Ken Calvert. Multiple other town halls and protests have sprung up across the country in recent weeks.

The coalition has reprised a campaign — part of a broader national movement — that fought against the GOP’s unsuccessful 2017 effort to repeal the Affordable Care Act.

The Republicans’ loss of House control in the 2018 midterm elections has been widely attributed to their stance on health care. Valadao was among the GOP members who lost their seats in 2018, though he took his back two years later.

Still, he voted for the House budget proposal last week, despite the fact that about two-thirds of the population in his district is on Medicaid — the highest in the state — and even though he is one of eight GOP House members who sent a letter to Speaker Mike Johnson warning about the “serious consequences” of deep cuts to Medicaid. Valadao’s office did not respond to requests for comment.

Calvert, who’s been in the House for 32 years and eked out reelection last November, also voted for the budget, as did Kim. All nine GOP members of California’s congressional delegation supported it, as did all House Republicans except one.

A woman writes a postcard. — Estela Hernandez writes a postcard urging Republican Rep. Young Kim to vote against cuts to Medicaid. (Jenna Schoenefeld for KFF Health News)

A woman with short, gray hair, wearing a navy sweater, speaks at a podium. — Beth Martinko, a resident of Anaheim, worries about what Medicaid cuts would mean for her disabled adult son, Josh, who relies on California’s version of the program for full medical coverage and for the 24/7 care he receives at home. (Jenna Schoenefeld for KFF Health News)

Critics of the budget plan say it helps the rich at the expense of society’s most vulnerable — an argument that was vigorously repeated at the Tustin town hall. But supporters of the plan say that extending the tax cuts, key provisions of which are set to expire at the end of this year, would avoid a large tax hike for average Americans and benefit low-income families the most.

“American families are facing a massive tax increase unless Congress acts by the end of the year,” Calvert said in a statement to KFF Health News before the vote. He vowed the GOP would not touch Social Security or Medicare. He did not offer similar assurances on Medicaid, but said, “We are not interested in cutting the social and healthcare safety net for children, disabled, and low-income Americans. We are focused on eliminating waste, fraud, and abuse.”

The document greenlit last Tuesday does not specify spending cut details, though it instructs the Energy and Commerce Committee, which oversees Medicaid and Medicare spending, to cut $880 billion — a large chunk of the up to $2 trillion in total cuts. The GOP’s razor-thin majority means Johnson will have a narrow path to get a more detailed budget passed. Republican support, whether from fiscal hawks who want deeper spending cuts or House members worried about slashing Medicaid, could ebb and flow as the details are hashed out.

Moreover, the House must reach a compromise with the Senate, which has passed a much narrower budget resolution that leaves the big tax cuts out for now.

Like Kim, Valadao and Calvert declined invitations to attend or send staffers to the town hall meetings in their regions. At the Tustin meeting, multiple speakers chided Kim for her absence. At one point, the large screen behind the podium flashed a picture of an empty chair with the words, in large block letters, “Congresswoman Kim, we saved you a seat.”

Kim spokesperson Callie Strock said in an email that Kim and her local staff had preexisting commitments that night. She added that Kim is “committed to protecting and strengthening our health care system.”

But those in attendance were clearly worried.

“It’s a moral obligation for all of us to look at the most disadvantaged people in our country and take good care of them,” said Beth Martinko, whose 33-year-old son, Josh, has autism and relies on Medi-Cal for his care. “This has no place in politics.”

A woman holds a protest sign in support of Medicaid. — Outside the Tustin town hall, organized by a coalition called “Fight for Our Health,” a woman holds up a protest sign criticizing President Donald Trump and urging Congress not to cut Medicaid.(Jenna Schoenefeld for KFF Health News)

CDC Firings Undermine Public Health Work Far Beyond Washington

The Trump administration’s sudden firing of Centers for Disease Control and Prevention employees gutted training programs across the nation whose participants bolstered the workforce of state and local public health departments that for decades have been starved of resources.

The programs are designed to cultivate a new generation of public health leaders, many of whom have gone on to work at the CDC. That was far from its only purpose. Local and state officials said the departures threaten to undermine the nation’s constant effort to identify and control infectious disease outbreaks.

The terminated CDC employees helped prevent and respond to outbreaks such as dengue fever and the flu. They worked with local officials to quickly test for viruses and ensure that testing in public health labs complies with federal regulations. Others monitored potential cases of tuberculosis or provided health education to adolescents to prevent sexually transmitted infections, according to interviews with fired workers and local public health officials.

As a CDC public health adviser, Gaël Cruanes had been working at New York City’s Department of Health and Mental Hygiene to detect cases of tuberculosis, a serious illness that spreads through the air and usually attacks the lungs.

The Public Health Associate Program deploys recent college graduates and other early-career workers for two years. After starting his job in October, Cruanes said, he contacted newly arrived immigrants and refugees potentially at risk of spreading TB in hopes of getting them into the city’s clinics for screening.

“It’s purely for the safety of the public at the end of the day,” Cruanes said. He and other trainees were fired in mid-February.

“It’s unconscionable,” he said.

A spokesperson for the Department of Health and Human Services, Andrew Nixon, declined to comment. The White House and CDC didn’t respond to requests for comment.

The Trump administration’s swift staff reductions in February targeted probationary employees, many hired in the past two years, who lack civil service protections against firings. The administration on Feb. 26 ordered federal agencies to submit plans by mid-March for large-scale layoffs, a move that could encompass a much broader swath of workers.

After CNN published this article, at least some fired CDC workers in the training programs were notified on March 4 that their terminations had been rescinded.

Affected employees were cleared to work on March 5, according to emails viewed by KFF Health News. “You should return to duty under your previous work schedule. We apologize for any disruption that this may have caused,” said the emails, which were unsigned and sent from an internal CDC email address.

The reversal came less than a week after a federal judge ruled that the Trump administration’s widespread terminations of probationary employees were likely illegal.

Seven CDC employees — including from the associate program — assigned to the New York City health department were originally terminated, Michelle Morse, the agency’s acting commissioner, testified during a City Council hearing Feb. 19.

In an interview, Morse said the health department was exploring how to retain them.

“We’re looking into what the CDC could do,” she said, “but we are really just trying to use our own levers that we have within the health department to see what’s possible for those staff.”

Since its creation in 2007, the Public Health Associate Program has placed 1,800 people in nearly every state and territory, plus the District of Columbia, according to the CDC.

The sudden firings meant “there was no lead time to try to figure out what we’re going to do,” said Anissa Davis, the city health officer at the Long Beach Department of Health and Human Services.

Three participants of the associate program worked at the Long Beach department, Davis said. A CDC public health adviser was one of four employees working on sexually transmitted infections and HIV surveillance. Two others were with the 13-person communicable disease control team, which includes staff who respond to outbreaks in nursing homes, hospitals, restaurants, and schools, Davis said.

“They are invaluable,” Davis said. “Public health is always under-resourced so having these people really helps us.”

The U.S. public health system was already under severe strain at the onset of the covid-19 pandemic — tens of thousands of jobs disappeared after the 2007-09 recession hit, and spending also dropped significantly for state and local health departments, according to a KFF Health News investigation. The backlash against pandemic-era restrictions drove many more officials to resign or retire. Others were fired. Still, officials said the pandemic also inspired some to pursue public health careers.

Scientists in the CDC’s Laboratory Leadership Service program were also fired in February. The CDC in 2015 started the two-year training fellowship to improve lab safety and quality following a series of failures, including in 2014 when CDC staff in Atlanta were potentially exposed to anthrax. The program each year recruits a small number of doctorate-level scientists; several work in state or local health departments.

At least 16 of 24 fellows in the program were fired in mid-February, according to two scientists who were terminated and spoke on the condition of anonymity for fear of professional retaliation. “Now we can’t be a resource for these labs anymore,” one of them said.

Public health labs need the CDC scientists “because they’re underfunded, understaffed,” the other said. “They are at their capacity already.”

Lab fellows’ responsibilities included helping with outbreak investigations and responses, including by training local staff on how to safely run tests or analyzing samples to identify the cause of an illness. Fellows were recently involved in setting up a new test in Florida to detect Oropouche, a relatively unknown insect-borne disease that has no vaccine or effective treatment. The World Health Organization in December said more than 11,600 cases had been reported in 2024 in South America, the Caribbean, the U.S., Europe, Canada, and Panama. The Florida Department of Health didn’t respond to a request for comment.

Fellows also helped develop the capacity to test for dengue fever in American Samoa, one of them said.

“When new stuff happens that’s urgent, it’s almost all the time we get pivoted to it,” the person said.

Participants in different training programs received the same form letter notifying them of their terminations, according to documents viewed by KFF Health News.

The letters said that terminated people had shown poor performance: “Unfortunately, the Agency finds that you are not fit for continued employment because your ability, knowledge and skills do not fit the Agency’s current needs, and your performance has not been adequate to justify further employment at the Agency.”

However, the fellows’ supervisors had written memos and emails saying they were in good standing, according to documents viewed by KFF Health News. Cruanes said he had not had a performance evaluation when he was terminated — his first was supposed to be Feb. 18, three days after he received his notice. He was among the CDC staff reinstated on March 4.

In Minneapolis, a CDC public health adviser had been providing sexual and reproductive health education in two high schools, as well as doing citywide work on STI testing, said Barbara Kyle, the city’s school-based clinic manager. The department was trying to shift those responsibilities to remaining personnel. “We’re right now just scrambling,” she said.

The city has relied on trainees through the CDC program for more than a decade, Kyle said.

“These two years of learning public health, on-the-ground experience, has really been such a positive move for our country,” she said. “So that concerns me if we lose that pipeline.”

Healthbeat reporter Eliza Fawcett contributed to this report from New York City.

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