Autism Archives - Ñî¹óåú´«Ã½Ò•îl Health News /tag/autism/ Ñî¹óåú´«Ã½Ò•îl Health News produces in-depth journalism on health issues and is a core operating program of KFF. Wed, 22 Jul 2026 14:28:56 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.6 /wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=32 Autism Archives - Ñî¹óåú´«Ã½Ò•îl Health News /tag/autism/ 32 32 161476233 MAHA’s Treatments for Autism: Camel’s Milk, Stem Cell Injections — And Spelling Therapy /health-industry/autism-controversial-treatment-spelling-maha-telepathy/ Mon, 08 Jun 2026 09:00:00 +0000 /?p=2240522 Elizabeth Bonker is a silent woman with a loud mission. She wants government agencies to cover the costs of training people with autism in a form of communication called assisted spelling. One problem: Leading professional organizations don’t believe it works.

“All nonspeakers above the age of 5 should be given the opportunity,” typed Bonker, who is 28 and cannot talk. Her mother, Virginia Breen, held a wireless keyboard for her. They sat on a hotel patio before an April 27 meeting with a senior aide to Health and Human Services Secretary Robert F. Kennedy Jr.

“We are misunderstood and underestimated,” Bonker typed, occasionally humming or lightly groaning as she considered where to place a slender forefinger on the keyboard.

Assisted spelling is used to help nonverbal people communicate by pointing to letters on boards or using keyboards with physical help from another person.

Supporters say assisted spelling has improved the lives of thousands of people with autism, such as Bonker, and they have powerful allies. Kennedy appointed Bonker and another autistic “speller,” as they call themselves, to a 20-member autism panel including several parents and others who have attributed autism to childhood vaccinations.

At the reconfigured panel’s first public session on April 28, three other members said their nonspeaking adult children were learning to communicate through spelling. The panel issued a resolution with  stating that “robust” communications programs are essential for autistic people. Bonker has urged the Department of Health and Human Services to support training in assisted spelling for those who want it.

But leading for , as well as those representing and , that these methods — premised on the idea that people with autism have the normal range of cognitive powers but are imprisoned in malfunctioning bodies — are flawed or fraudulent.

Other, validated methods enable nonspeakers to communicate through digital and analog pictures and letter boards. But assisted spelling isn’t autonomous communication, critics say: Consciously or not, the board holder may be influencing or responsible for the typed or pointed-at words — as with a Ouija board.

For many parents in Kennedy’s Make America Healthy Again community, the spelling controversy is angrily ringing the same bells as the notion that vaccines cause autism — which they refuse to consider debunked. As some people see it: Established medicine damaged them with vaccines and now refuses to accept a helpful treatment.

People with autism are “trapped in bodies that have betrayed them because the medical establishment has betrayed them,” said Louis Conte, who has a child with autism, in a of a Kennedy-allied MAHA publication.

By limiting access to spelling, “you are not just limiting expression, you are erasing identity,” said Katie Sweeney, the mother of an autistic adult who is affiliated with an anti-vaccine , at the autism panel meeting.

Mainstream autism experts and advocates in March convened the Independent Autism Coordinating Committee as a counter to Kennedy’s panel. At the new group’s meeting, one member spoke out against the spelling methods.

“In this underfunded disability environment, I don’t want a single penny diverted to debunked interventions like spelling,” said , a senior lecturer in history at the University of Pennsylvania and an who described her 27-year-old son as “profoundly autistic.”

It’s not only a waste of time, she said later in an interview, but “people subjected to spelling are not given access to evidence-based education. Every interaction turns someone like my son into a puppet, and I find that very objectionable.”

A Patchwork of Perspectives

The universe of autistic people, their parents, researchers, advocates, and service providers is a broad, acrimonious spectrum. Some say that vaccines or chemical exposures caused a massive increase in autism, others that diagnostic changes account for most of the increase. Some seek mainstream or alternative treatments, some demand classroom inclusion, and others want residential treatment. Some people with autism say it’s a difference, not a disability.

“When I tell the parents of a young child they have autism, it’s a tragedy,” said Audrey Brumback, a child neurologist at Dell Medical School at the University of Texas-Austin. “When I give the same diagnosis to a teenager, it’s good news. It means, ‘There’s nothing wrong with you; you’re just autistic.’”

Scientific medicine has failed to deliver good treatments for autism. After four decades of concerted research, “the results have for the most part been very disappointing,” said David Mandell, a professor of psychiatry and pediatrics at the University of Pennsylvania.

Severely autistic children — those requiring round-the-clock care with ailments like epilepsy and generally lacking in verbal language — account for of all U.S. autism diagnoses. Caring for them may mean dropping careers and spending vast sums on therapy. “They ought to spell special education with a dollar sign,” said Tracy Simmons, whose 17-year-old son, Noah, has autism.

Many parents of autistic children have tried vitamins and diets that exclude wheat, soy, or dairy. Some have turned to hyperbaric oxygen chambers, others to pig hormones to repair damage spuriously attributed to measles-mumps-rubella vaccines, and infusions of metal-leaching chemicals to remove traces of heavy metals in childhood shots. Recent regimens include camel’s milk, broccoli extract, and stem cell injections obtained at great expense in Panama and India.

In September, the White House touted leucovorin, used in some cancer care and for an ultra-rare genetic condition. Marty Makary, then-commissioner of the FDA, said the drug could help 50% to 60% of kids with autism.

There’s little evidence behind any of these treatments, Brumback said. Many parents try multiple remedies at once; if a child’s condition improves, it’s hard to tell what worked — or whether the child simply grew out of a problem.

Noah Simmons has spent two years learning to spell and type. At a climbing center in Gaithersburg, Maryland, he communicated with the aid of his mother, Tracy Simmons, who is holding a laminated sheet with the alphabet. (Arthur Allen/Ñî¹óåú´«Ã½Ò•îl Health News)
Noah Simmons glides down the rope at a climbing center. He high-fived his instructor and then beamed as he spelled out, “Im going to crush it again!” (Arthur Allen/Ñî¹óåú´«Ã½Ò•îl Health News)

Noah the Speller

During a Zoom session in which he typed on a keyboard held by his mother, Noah Simmons wrote glowingly about the world opened to him by two years of learning to spell and type.

“Im a new person. I have friends, I write, climbing,” he typed. “Conversation. I can have one. I have a say. Im human now.”

Later, at an indoor climbing center in Gaithersburg, Maryland, Noah scrambled nearly to the top of the wall before he slipped. He glided down the rope and slapped a high five with his climbing instructor as his mother approached. She carried a laminated sheet with the alphabet on it.

Tracy Simmons held the paper while Noah stabbed at the letters one by one, ending with a flourishing swipe at the exclamation mark: “Im going to crush it again!”

There, and at a later keyboard session at home, Noah seemed in control. But when Tracy stopped offering verbal prompts and encouragement, or stopped holding the board, Noah often got lost and signaled a need for help.

Tracy Simmons acknowledges that whoever holds the board could be steering a speller’s words. Despite his climbing prowess, Noah lacks fine motor skills, is anxious, and has trouble controlling his body, she said.

“He’s working on becoming an independent typer. He can do it short amounts of time,” she said. “But at times he gets overwhelmed.”

The method used by Noah and his mother came into use in the United States in the early 1990s. At first, trainers guided the arms or hands of the spellers as they pointed to a letter board. The idea was that the intelligence or literacy of severely autistic people was trapped in bodies they couldn’t control. They needed help physically learning to spell, first with a pencil or finger pointing at stenciled or printed letters, and eventually by typing on a keyboard.

Within a few years, however, dozens of experiments had shown that the facilitators, not the autistic people, were doing the spelling. A that the spellers could identify words or objects without their facilitators.

In addition, the technique has resulted in — sometimes in the autistic person’s life skeptical of the spelling process.

Next came the Rapid Prompting Method, devised by Soma Mukhopadhyay, an Indian mother of a boy with profound autism, who brought her system to the United States in 2001. Elizabeth Vosseller, a speech pathologist in Herndon, Virginia, launched a nearly identical method, Spelling to Communicate. In both, the facilitator, not the speller, holds the letter board. But each method relies on prompts.

Mukhopadhyay and Vosseller, who did not respond to requests for comment, have each declined to submit their systems to the kind of testing that disproved facilitated communication. Bonker said calls for such tests show a lack of respect for the disabled.

Asked why, after 23 years as a speller, she couldn’t communicate alone or without her mother holding the board, Bonker typed, “I can do it in certain environments that don’t include interviews with strangers.” Severely autistic people need coaches to help control their anxiety, Breen said.

Another star of the speller world, Woody Brown, spoke through his mother with Jenna Bush Hager on the Today show on April 1. The Browns were promoting his novel, Upward Bound, which became an immediate New York Times bestseller after its March release. During the segment, Mary Brown spoke in complete sentences that she said came from Woody, but the letters he typed, as far as the program’s viewers could see, did not correspond to her words and often looked like gibberish.

This raised questions about how Woody Brown could be the author of what critics described as a brilliant, sensitive novel. They pointed out that Mary Brown has worked as a Hollywood script analyst. The Browns did not respond to efforts to reach them for comment.

“Spellers” are best known to the public through the success of The Telepathy Tapes, which briefly unseated The Joe Rogan Experience as the country’s most popular podcast early last year. In The Telepathy Tapes’ first season, people with profound autism were allegedly revealed as clairvoyant superhumans.

The evidence for their telepathic abilities was produced through spelling. The host showed spellers and facilitators two things, and the speller, with the facilitator present, typed out what the facilitator saw. Viewers had to wonder whether this was evidence of telepathy or confirmation of what critics have said all along: that the facilitator is the one controlling the words, often by feeding the speller subtle cues.

Bonker said she appreciated the Telepathy Tapes’ host for including her nonprofit group’s information on its website. As for telepathic skills, “I believe nonspeakers have many gifts,” she said. “And I believe what they say.”

The debate over spelling is playing out in boards of education and courtrooms, where parents of autistic children seek aid for their children’s spelling lessons.

In New York state in March, anti-vaccine on state Sen. Patricia Fahy, the Democratic chair of the disabilities committee, after she inserted language into a disability rights bill requiring that payments go to “verified” communication methods that assured patient autonomy.

Vikram Jaswal, a University of Virginia psychologist who works with spellers, said he’s seen people with severe autism who can type independently, though only a handful have that ability out of the couple of hundred spellers he’s met. More research is needed to figure out who can best benefit from the technique, he said.

Tracy Simmons believes in the method, and so does her son — assuming he’s in control of what he types.

On a recent morning, Tracy read aloud a beautiful escape-from-Alcatraz story she said Noah had written with her help and that of his spelling trainer. “He writes all the time in his head,” she said, but it could take years for her son to consistently type independently.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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RFK Jr. Seeks To Peek at Americans’ Medical Records for Clues on Autism and Vaccines /mental-health/sharing-patients-medical-records-access-rfk-jr-project-link-autism-vaccine-injuries/ Thu, 04 Jun 2026 09:00:00 +0000 U.S. health secretary Robert F. Kennedy Jr. is pursuing federal government access to most Americans’ medical records, in a quest to research a link between vaccines and autism — a connection the medical establishment studied for decades and flatly rejects.

The Department of Health and Human Services is seeking data from little-known state systems that allow hospitals and clinics to exchange detailed, identifiable patient information, Ñî¹óåú´«Ã½Ò•îl Health News has learned.

In private meetings, some public health leaders have objected to giving Kennedy’s team access to such data, raising doubts that it’s legal or that the information would even be useful.

They have also expressed concerns about allowing the federal government to peer into the minutiae of Americans’ medical records, which could mean viewing anything from doctors’ notes to prescription history. HHS has offered no insight into how it will protect or handle the personal health information it obtains.

But Kennedy told Ñî¹óåú´«Ã½Ò•îl Health News that medical records are key to investigating the cause of autism, vaccine safety, and chronic diseases. And millions of dollars in grant money has poured into a Nebraska nonprofit that has assisted Kennedy’s effort, according to state records.

He and his advisers have been frustrated that federal access to Americans’ medical records has been limited.

“We need a good health record system, and one of the things that really surprised me most when I came into office is that there is — that the systems are broken,” Kennedy said in a May interview. “We’ve had to go to the states and, luckily, we’ve got a lot of cooperation from the states, but we now have databases together that we can actually do the studies on. Those studies are in motion.”

HHS has not publicly announced any new projects involving medical records and autism or vaccine research. Kennedy faced blowback last year when he proposed compiling the medical records of people with autism to create a federal disease registry — which health department officials .

But Kennedy said in May, “We have a whole pipeline of studies that will be done over the next year.”

Though the White House has steered Kennedy away from further changes to U.S. vaccine policy ahead of November’s crucial midterm elections, President Donald Trump has regularly echoed Kennedy’s doubts about vaccine safety and last week signed an executive order calling for the U.S. to reduce the number of vaccines recommended for children.

Kennedy’s political appointees and allies — including William “Reyn” Archer III, a former Texas health official and whom Kennedy hired as a senior adviser — have led the initiative for the health department to collect and examine medical records.

A man sits at a table with a placard with his name on it. Other faces are seen blurred in the foreground in front of him.
William “Reyn” Archer III, a former Texas health commissioner, attends the Advisory Committee on Immunization Practices meeting at Centers for Disease Control and Prevention headquarters on Sept. 20. (Mary Conlon/AP)

Federal officials met with leaders of the state-run health information exchange systems several times over the past year and asked how the personal medical records they maintain could be used for vaccine research, according to seven people who participated in the discussions or were familiar with them.

Craig Behm, who runs the Maryland health information exchange, said Kennedy’s team asked about how the vast trove of medical records they store from hospitals and health systems could be used to study vaccines.

“If this administration wants to conduct research on the effectiveness of vaccines, are you saying you all can help us conduct that research?” Behm recalled being asked by a top official at HHS’ health information technology office.

Last June, Behm and leaders of other state exchanges met with Kennedy’s top advisers to discuss sharing more medical data with federal agencies. The state organizations followed up with a pitch in October for a new surveillance system that would give the federal health department “real-time, 24-hour data feeds on opioid and chronic disease trends” within a year, according to a presentation reviewed by Ñî¹óåú´«Ã½Ò•îl Health News. Under the proposal, HHS would get data from 90% of the population’s medical records by 2028.

Administration officials regularly asked during the meetings how the records could be used to monitor vaccine safety. Kennedy has rejected the federal government’s current vaccine-monitoring systems; decades of research has shown immunizations are safe and effective for most people.

“Vaccine safety, or whatever words you want to use, has come up pretty consistently in those conversations,” said John Kansky, CEO of the Indiana Health Information Exchange.

Kansky sees the potential value of sharing information from the exchanges for public health but is worried about the focus on vaccines: “It’s like, oh man, I wish you would have picked something that pushed fewer buttons for people.”

A System To Monitor Chronic Disease

Nearly every state has at least one health information exchange — often regulated by state laws and run by private companies or nonprofits — that enables hospitals and health systems to immediately share patients’ medical records with one another. The systems allow doctors and nurses to quickly pull up nearly anyone’s medical history and records at emergency rooms or share after-visit summaries and notes with patients’ primary care providers, for example.

In certain circumstances — most often dealing with cases of infectious diseases such as measles or flu — the exchanges notify public health authorities, like the state health department or the Centers for Disease Control and Prevention. Using the exchanges for broader public health purposes is not an unusual idea in itself. But it can present privacy, legal, and ethical complications, health officials say.

In the end, Behm said his organization in Maryland declined to share more data with the federal government for vaccine research, noting that sharing medical records for that purpose would require a rash of approvals from hospitals, state political leaders, and research boards. Any new data-sharing agreement should also have a clear, detailed framework outlining what would be shared and with whom, he added.

“A number of us said, ‘We can’t do anything our agreements don’t allow us to do, so no,’” Behm said. Indeed, most health information exchanges have contractual restrictions on who can access clinical data.

Kansky said Indiana is still weighing whether to provide additional data for Kennedy’s project, and that nothing has yet been shared.

HHS spokesperson Emily Hilliard did not answer questions about how many states are participating in Kennedy’s project, what new data the agency is collecting, how much the federal government is spending on the initiative, how it is protecting patient privacy, or who has access to the data.

“HHS is strengthening public health surveillance and modernizing data systems to better understand and combat the childhood chronic disease epidemic as part of Secretary Kennedy’s Make America Healthy Again agenda,” Hilliard said in an emailed statement. “Americans deserve robust systems to monitor the drivers of chronic illness.”

Kennedy has asserted, without evidence, that vaccines can cause chronic illness.

A Kennedy Partner in Nebraska

At least one state has been cooperative.

The former leader of Nebraska’s state health information exchange has led the effort to share data from medical records with the federal government.

Jaime Bland, former CEO of CyncHealth — the Nebraska health information exchange used by in the state — said several states are looking to “open up channels” to provide more analysis to Kennedy’s team.

“They’re looking at the data differently and providing some insights back to the CDC,” Bland told Ñî¹óåú´«Ã½Ò•îl Health News.

Bland was among a group who proposed that CyncHealth would help kick off the initiative, according to a 43-slide PowerPoint presented to federal officials during an October meeting.

CyncHealth and other state health information exchanges would “ingest data from hospitals, clinics, laboratories, pharmacies, payers, and social services agencies,” then “link claims and clinical records through a master patient index.”

Data from the exchanges “will be deidentified where appropriate,” according to one slide.

The federal government would pay the exchanges for furnishing the records, according to the proposal: $3 a person, annually.

Officials would “frame publicly that this is not a new database, but a federated trust model that delivers real-time data for all HHS missions,” the presentation reads.

After the meeting, Nebraska’s health department was awarded a large grant from the CDC, and CyncHealth in turn got millions of dollars from the state.

On Dec. 19, the CDC announced new funding under its , which sends money to state and local health departments for lab work, health information enhancements, and solutions for outbreaks.

Nebraska’s state health department was awarded $18.7 million — the most of any state last year, though Nebraska is the 38th most populous state. By comparison, Texas received $9.2 million, and California got $10.8 million.

CyncHealth was then awarded three contracts totaling $13.6 million from the state health department just weeks later, on Jan. 9 and Jan. 16, according to a publicly accessible database of state contracts.

Grace McNamara, a spokesperson for CyncHealth, said it retained $2.4 million of the funding for Kennedy’s project; the remaining money was distributed to “other participating states and various vendor organizations for implementation support.”

A former CDC official who was aware of the transaction, but not authorized to speak publicly about it, confirmed the money was intended for CyncHealth to supply data for Kennedy’s initiative to look at vaccines and autism. McNamara said that the “work is focused on improving outcomes related to acute and chronic illnesses.”

“The referenced project is not research, but rather a proof-of-concept project on how health information exchange and public health can work together to improve health outcomes and is not specific to autism,” she said in an emailed statement.

McNamara did not answer questions about what type of medical data is being provided to the federal health department or whether patients’ identifying information is removed.

Bland left her post at CyncHealth — where she was paid nearly — in December. She was named in April as the chief data strategist for the MAHA Institute — a think tank founded by allies of Kennedy and Trump to advance their Make America Healthy Again movement.

Bland agreed with Kennedy that data from state health information exchanges could provide more insight into autism’s causes or vaccine injuries.

“The data is so fragmented, so modeled when it comes to population health and public health, that we lose sight of the individual stories,” Bland said. She told a story she had heard about a woman who had a seizure after receiving the HPV vaccine.

“You know, the vaccine is safe — it absolutely is — but it wasn’t safe for her,” Bland said. “As public health officials, we say the vaccine is safe. But there are cases where it is not.”

Daniel Jernigan, a former top CDC official who left the agency last summer, said he tried to point Kennedy to data that would help the health secretary study vaccine safety and autism.

Dan Jernigan shakes the hand of a man off screen outside of the CDC headquarters.
Former CDC official Daniel Jernigan greets a supporter after resigning from the agency on Aug. 28. (Elijah Nouvelage/Getty Images)

After 31 years at the CDC overseeing public health surveillance, emerging infectious diseases, and the influenza divisions, Jernigan thought the solution was simple. The secretary could work with researchers to obtain huge databases pulled from health systems nationwide and maintained by major electronic health records companies.

Those databases are deidentified, meaning they don’t include patient names or other information that can identify individuals. Jernigan said Kennedy didn’t seem interested.

Instead, as The New York Times first reported, the health secretary dispatched two top advisers — Archer and Hannah Anderson, his former deputy chief of staff — to the CDC’s headquarters in Atlanta last July to download millions of identifiable patient records directly from the Vaccine Safety Datalink, the system the health agency uses to investigate complications from vaccines. The records, though, were decades old.

Jernigan said the federal government has limited legal authority to access medical records from state health information exchanges. In any case, examining those records may provide a view of a person’s medical history that will not necessarily produce answers to Kennedy’s questions about vaccines and autism.

“If they’re just using the electronic health record data, there are limits to that,” Jernigan said. “If they’re only looking at electronic health record data, all you’re going to get is what was captured in the encounter. It’s not going to be very satisfying.”

Ñî¹óåú´«Ã½Ò•îl Health News data reporter Maia Rosenfeld contributed to this article.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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Kids Keep Getting Stuck in Hospitals, Even After Being Cleared for Discharge /health-industry/hospital-boarding-social-stays-children-kids-missouri-illinois/ Mon, 18 May 2026 09:00:00 +0000 Overwhelmed by the demands of caregiving, Quette dialed 911 when she found her teenage son downstairs in their kitchen struggling to breathe.

He had rolled his wheelchair to the oven to keep himself warm as he tried to regulate his temperature, she recalled, and was drenched in sweat from an apparent infection.

In that moment, Quette knew that she and her son’s grandmother could no longer meet his medical needs on their own at their Illinois home just outside St. Louis. He had become paralyzed when he was shot in 2023, and, despite their efforts, they struggled to take care of him. But she never imagined that her quick call for help that day would turn into a months-long hospital stay for her son — even after he was well enough to be discharged.

She said their family had been begging hospitals for a home health aide to help care for his wounds, only to be accused of neglect. “They were like, ‘Well, y’all almost killed him,’” she recalled officials telling her. Ñî¹óåú´«Ã½Ò•îl Health News agreed to use only her nickname to protect the safety of her son.

“I had to give up. I just couldn’t take care of him anymore,” Quette said. “It was just a lot on me. It was something that I was not ready for.”

Once his immediate medical needs were addressed, her son didn’t leave the hospital. His grandmother, who was his legal guardian, had died and the teen ultimately became a ward of the state. He continued living inside a St. Louis children’s hospital for what’s commonly called a “social stay.” Also referred to as hospital boarding or delayed discharge, the practice of keeping children in hospitals “beyond medical necessity” has become a persistent problem — flummoxing officials in Missouri, Illinois, Minnesota, Georgia, and beyond — when there’s no safe place to care for the child.

Finding homes for foster kids is difficult across the country. They have spent nights in casino hotels in Nevada and offices in Georgia . This problem even has a name: “hoteling.” But add medical needs to the mix, and hospitals become the holding station for some kids.

Many children stuck in this limbo have mental health or behavioral issues, while some have chronic physical conditions or disabilities for which they need technology, equipment, or other assistance.

“It’s definitely a national problem,” said , a pediatrician at Boston Children’s Hospital and the chair of the American Academy of Pediatrics’ . “Every state has different options in terms of where kids can go post-acute care. But in general, there’s many of our kids with medical complexity who just don’t have access to the appropriate home nursing to bring them home safely.”

It’s gotten so bad that Missouri lawmakers have repeatedly to try to significantly reduce the number of hospital boarding days each year and eventually end the practice altogether.

A woman, photographed from the shoulders down, holds a piece of medical equipment that was once used by her son.
Quette with the brace that her teenage son needed after he was paralyzed in a shooting. She cared for him in her Illinois home, she says, until it became too difficult to keep him healthy there. Ñî¹óåú´«Ã½Ò•îl Health News agreed to use only her nickname to protect the safety of her son. (Cara Anthony/Ñî¹óåú´«Ã½Ò•îl Health News)
A close up shot of someone's hands holding a box of medical items.
Quette shows some of the medical supplies she needed to care for her teenage son after he was paralyzed in a shooting. It ultimately became too difficult, she says, for her to keep him healthy at home. (Cara Anthony/Ñî¹óåú´«Ã½Ò•îl Health News)

Quette said her son was housed in a private hospital room while he waited for the state to find a place for him elsewhere. Other children spend weeks, months, and, in extreme cases, years in acute care hospitals while grown-ups scramble to find them safe places to go, according to Lynn Rasnick, a nurse and vice president at the Missouri Hospital Association. She said some children sleep on emergency room stretchers. They sit in windowless rooms. They miss school. And they’re exposed to all the trauma that comes through the hospital on any given day.

To keep young boarders safe, some hospitals hire “sitters” for kids with no place to go, while other institutions have passed along chaperoning duties to hospital workers.

But all that comes at a cost beyond the toll it takes on kids and families. When a child no longer needs hospital-level care, insurers don’t have to pay for their stay. Some hospitals eat the cost. Others ask the state for reimbursement if the child who is waiting for placement is in state custody.

According to the Missouri Hospital Association, the state’s Department of Social Services reimbursed $16.3 million to 19 hospitals for 9,943 boarding days last year — more than $1,600 a night. But association spokesperson Dave Dillon said that’s a substantial undercount of the problem and that hospitals often aren’t reimbursed for housing children.

One study found that boarding a child with a complex medical condition in Minnesota a day in 2017. And a 2023 Minnesota Hospital Association survey of about 100 hospitals of “unnecessary” patient stays for adults and kids at $487 million for 195,000 days of care.

Lin, the Boston-based pediatrician, said a shortage of home healthcare workers forces some families to keep their children in the hospital, even though they’re well enough to go home.

State Medicaid programs face new pressure from federal cuts in congressional Republicans’ One Big Beautiful Bill Act. Medicaid, which provides healthcare coverage for those with low incomes or disabilities, is expected to lose nearly $1 trillion in federal funding by 2034, so some states are already threatening to scale back optional home-care programs.

Quette, a single mom who once worked as a paid caregiver and now works as a custodian, said her family repeatedly asked hospitals for a home health aide but was told her son’s insurance wouldn’t cover it. Her son’s paternal grandmother, who had helped raise him, was in a wheelchair herself at that point. Quette’s son needed his bandages changed regularly, and she had to turn him around in his bed every four hours.

“I had to wake up out of my sleep to rotate him,” Quette said. “And I couldn’t do it. I was oversleeping.”

Parents across the country face similar challenges. Last year, Georgia officials said 500 children had been and turned over to the state’s Division of Family & Children Services due to complex behavioral or psychiatric needs.

In Colorado, a hospital worker emailed a state representative for help after an autistic 13-year-old boy at UCHealth Longs Peak Hospital in Longmont. After his father left him there, officials told hospital workers that it would take months to find a safe place for the boy to go.

Last fiscal year, the Illinois Department of Children and Family Services logged 304 cases of youth in psychiatric hospitals beyond medical necessity, according to an released by the state. About 43% of those cases were among patients ages 13 to 16.

This year, Missouri state Sen. , a Republican, introduced a bill that would require his state to move faster and pay for care when a child is stuck in a hospital. Similar bills died in committee and . This year, Burger’s bill remained stuck in committee when the legislative session ended May 15.

According to a attached to the bill, paying for hospital boarding could cost more than $148 million a year in a state that already to fund its upcoming $50.7 billion budget.

Over 18 months, the Mercy hospital system, one of the largest in Missouri, logged 2,687 boarding days, testified Patty Morrow, a Mercy vice president, in a March hearing on the bill. That included adults who also were stuck without a safe place to go.

“That was never really ever the intended purpose of a hospital,” Morrow told Ñî¹óåú´«Ã½Ò•îl Health News. “The current state cannot be the ongoing solution.”

The bill requires the juvenile court system to ensure that children are placed in “an appropriate setting,” which would entail involvement of social workers and other public servants.

Rasnick, with the Missouri Hospital Association, also spelled out the issue during the hearing. “You can’t just discharge a 9-year-old into the street,” she told lawmakers.

Quette’s son is still in state custody but no longer hospitalized. Illinois officials declined to let the teen share his story with Ñî¹óåú´«Ã½Ò•îl Health News.

His mother said she is still holding on to his brace, bandages, ointment, and other medical supplies in her home. “That’s all I have,” Quette said. “That’s the stuff I will never give away.”

This piece was supported by a grant from the Association of Health Care Journalists, with funding from The Joyce Foundation.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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RFK Jr. Made Promises in Order To Become Health Secretary. He’s Broken Many of Them. /health-industry/rfk-jr-robert-kennedy-vaccines-broken-promises-senators-cassidy/ Fri, 13 Feb 2026 10:00:00 +0000 /?post_type=article&p=2153482

One year after taking charge of the nation’s health department, Health and Human Services Secretary Robert F. Kennedy Jr. hasn’t held true to many of he made while appealing to U.S. senators concerned about the longtime anti-vaccine activist’s plans for the nation’s care.

Kennedy squeaked through a narrow Senate vote to be confirmed as head of the Department of Health and Human Services, only after making a number of public and private guarantees about how he would handle vaccine funding and recommendations as secretary.

Here’s a look at some of the promises Kennedy made during his confirmation process.

The Childhood Vaccine Schedule

In two hearings in January 2025, Kennedy repeatedly assured senators that he supported childhood vaccines, noting that all his children were vaccinated.

Sen. Elizabeth Warren (D-Mass.) about the money he’s made in the private sector from lawsuits against vaccine makers and accused him of planning to profit from potential future policies making it easier to sue.

“Kennedy can kill off access to vaccines and make millions of dollars while he does it,” Warren said during the Senate Finance Committee hearing. “Kids might die, but Robert Kennedy can keep cashing in.”

Warren’s statement prompted an assurance by Kennedy.

“Senator, I support vaccines,” he said. “I support the childhood schedule. I will do that.”

Days later, Sen. Bill Cassidy of Louisiana, chair of the Senate Health, Education, Labor, and Pensions Committee, declared Kennedy had pledged to maintain existing vaccine recommendations if confirmed. Cassidy, a physician specializing in liver diseases and a vocal supporter of vaccination, had questioned Kennedy sharply in a hearing about his views on shots.

“If confirmed, he will maintain the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices’ recommendations without changes,” Cassidy said during a speech on the Senate floor explaining his vote for Kennedy.

A few months after he was confirmed, Kennedy fired all the incumbent members of the vaccine advisory panel, known as ACIP, and appointed new members, including several who, like him, oppose some vaccines. The panel’s recommendations soon changed drastically.

Last month, the CDC removed its universal recommendations for children to receive seven immunizations, those protecting against respiratory syncytial virus, meningococcal disease, flu, covid, hepatitis A, hepatitis B, and rotavirus. The move followed a memorandum from the White House calling on the CDC to cull the schedule.

Now, those vaccines, which researchers estimate have prevented thousands of deaths and millions of illnesses, are recommended by the CDC only for children at high-risk of serious illness or after consultation between doctors and parents.

In response to questions about Kennedy’s actions on vaccines over the past year, HHS spokesperson Andrew Nixon said the secretary “continues to follow through on his commitments” to Cassidy.

“As part of those commitments, HHS accepted Chairman Cassidy’s numerous recommendations for key roles at the agency, retained particular language on the CDC website, and adopted ACIP recommendations,” Nixon added. “Secretary Kennedy talks to the chairman at a regular clip.”

Cassidy and his office have repeatedly rebuffed questions about whether Kennedy, since becoming secretary, has broken the commitments he made to the senator.

Vaccine Funding Axed

Weeks after Kennedy took over the federal health department, the CDC pulled back $11 billion in covid-era grants that local health departments were using to fund vaccination programs, among other initiatives.

That happened after Kennedy pledged during his confirmation hearings not to undermine vaccine funding.

Kennedy replied “Yes” when Cassidy asked him directly: “Do you commit that you will not work to impound, divert, or otherwise reduce any funding appropriated by Congress for the purpose of vaccination programs?”

A federal judge later ordered HHS to distribute the money.

The National Institutes of Health, part of HHS, also yanked dozens of research grants supporting studies of vaccine hesitancy last year. Kennedy, meanwhile, ordered the cancellation of a half-billion dollars’ worth of mRNA vaccine research in August.

A Discredited Theory About Autism

Cassidy said in his floor speech that he received a guarantee from Kennedy that the CDC’s website would not remove statements explaining that vaccines do not cause autism.

Technically, Kennedy kept his promise not to remove the statements. The website still says that vaccines do not cause autism.

But late last year, new statements sprung up on the same webpage, baselessly casting doubt on vaccine safety. “The claim ‘vaccines do not cause autism’ is not an evidence-based claim because studies have not ruled out the possibility that infant vaccines cause autism,” the now misleadingly reads.

The webpage also states that the public has largely ignored studies showing vaccines do cause autism.

That is false. Over decades of research, scientific studies have repeatedly concluded that there is no link between vaccines and autism.

A controversial 1998 study that captured global attention did link the measles, mumps, and rubella vaccine to autism. It was retracted for being fraudulent — though not until a decade after it was published, during which there were sharp declines in U.S. vaccination rates.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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Readers Balk at ‘Gold Standard’ of Autism Treatment /letter-to-the-editor/letters-to-the-editor-january-2026-autism-gold-standard-aba/ Tue, 20 Jan 2026 10:00:00 +0000 /?p=2142515&post_type=article&preview_id=2142515 Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.


Ñî¹óåú´«Ã½Ò•îl Health News received dozens of letters in response to an article last month describing how state budget shortfalls have led to cuts targeting therapies that many families of autistic people call essential. Here is a sampling:

Autism Care: Pros and Cons

I am writing to provide additional context and research for your article on state cuts to the autism therapy known as applied behavior analysis, or ABA (“It’s the ‘Gold Standard’ in Autism Care. Why Are States Reining It In?” Dec. 23).

While the piece focused on caps or cuts in service hours being a harmful thing, there have been increased hours of therapy do not lead to better outcomes for autistic children. While different families certainly have different needs that should be addressed individually with clinicians, and while some children may struggle with reduced intervention hours, it’s important to note that dire predictions about families losing hours of services are not borne out by research.

Another important piece of context missing from this article is that ABA is considered a controversial intervention among many in the autism community. While many families have positive experiences, many other families and autistic adults strongly criticize ABA and have described widespread abuse and trauma from it. is beginning to provide empirical confirmation for these reports of trauma from ABA.

An article about ABA that leaves out this controversy is not a complete picture. At a time when autism is on the national stage and autistic people are routinely dehumanized by our leaders in government, it is critical to think about how coverage about autism is framed and whose voices are centered and included.

In stories about ABA, I believe it is crucial to include autistic voices (such as people who identify as ABA survivors, and autistic parents of autistic children, who are more likely to avoid, quit, or criticize ABA). It is responsible reporting to ask why ABA is widely criticized by so many who have experienced the intervention, and why this criticism is unique to ABA and not seen with other autism interventions, such as speech therapy and occupational therapy. Additionally, it’s essential to investigate the ABA industry’s response to these critiques. (Has the industry collected data or conducted research on what aspects of its past or current interventions have caused harm? Has it changed training or certification requirements for interventionists to address any “bad apples” among therapists? Has the industry engaged with abuse survivors or autistic-led organizations in making changes to practices and policies? Have safeguards been created and required in behavior plans? Have policies and ethical guidelines been updated to address critiques from autistic adults?)

Ethics and safeguards, as well as current research, surrounding an intervention for vulnerable children are a critical part of any article about whether taxpayer money is being used responsibly for a controversial autism intervention.

— Kim-Loi Mergenthaler, Burlington, Vermont


I work with Behaven Kids, a locally owned ABA therapy provider serving families in Omaha, Nebraska. Thank you for your recent article highlighting the impact of Medicaid ABA rate cuts on Nebraska families and providers.

As a local provider, we wanted to offer additional context. Overutilization was cited in the article as a primary driver of rate reductions; much of that overuse in Nebraska was associated with large, out-of-state companies operating with limited long-term investment in the local workforce. Many of these organizations had access to external funding or staffing pipelines, allowing them to absorb the cuts or exit the state altogether.

In contrast, Nebraska-based providers rely almost entirely on local clinicians and local funding streams. The rapid implementation of the rate cuts, with only weeks for providers to adjust, has placed a disproportionate strain on organizations rooted in Nebraska that are committed to long-term care for families here. In some cases, families experienced service disruptions or lost continuity of care as larger providers scaled back or withdrew.

We believe there is an important distinction to be explored between ethical, needs-based service delivery and the practices that contributed to overutilization concerns. A more targeted policy approach, such as improved provider vetting or more rigorous authorization standards, could better protect families while preserving access to high-quality local care.

If not policymakers, then better to inform families and pediatricians. Many people continue to work with out-of-state providers without understanding the ethical use issues or that their services could be at risk due to the ever-changing market and noncommittal companies.

— Whitney Reinmiller, Omaha, Nebraska


Why are states reining in the “gold standard” in autism care? Well, frankly, it’s not the gold standard.

As I wrote in , nations are spending billions on developmental disability interventions that too often lack fidelity, effectiveness, or accessibility. Meanwhile, hundreds of children and youth remain on long waitlists, many in rural areas receive no services, and families with the highest-needs children often go without support.

Decades of research shows that the most effective and cost-efficient interventions occur when care is:

  • Delivered in natural environments and daily routines.
  • Inclusive of parents and natural caregivers.
  • Provided with fidelity to evidence-based practices.

We must restructure the system to financially incentivize contextualized, parent-coached interventions and expand telehealth options. Doing so will increase capacity, improve outcomes, and reduce long-term costs to Medicaid, schools, and corrections.

— CR “Pete” Petersen, Hagerman, Idaho


I serve as the chief clinical officer for one of the largest providers of ABA therapy in the country. In that role, I regularly engage with state Medicaid agencies and managed-care organizations across several states on issues related to access, quality, and cost of autism services.

What I am increasingly seeing is states relying on blunt instruments to control spending, primarily rate reductions and increasingly restrictive utilization management. While these approaches may generate short-term savings on paper, they often create unintended and counterproductive consequences. They do not differentiate between clinical complexity, risk, or progress, and they disproportionately impact providers serving higher-need populations.

In practice, this leads to workforce instability, reduced access to care, longer waitlists, and greater reliance on crisis services and emergency systems. Families experience disruption and uncertainty, and states ultimately absorb higher downstream costs when care becomes less effective or less available.

There is a more sustainable path forward. Instead of focusing narrowly on rate cuts or hour reductions, states can move toward models that incentivize outcomes and appropriate reductions in intensity and length of care over time. This requires standardized, risk-adjusted measures of progress, clear and defensible discharge criteria tied to functional outcomes, and payment structures that reward timely, durable improvement rather than volume alone.

Outcome-aligned approaches create better incentives for providers, greater transparency for families, and more predictable, responsible spending for states. The goal should not be simply to reduce utilization, but to reduce dependency through effective care.

— Timothy Yeager, Fresno, California


The Broader Risks of Body Sculpting

Kudos on an excellent, very important article (“The Body Shops: After Outpatient Cosmetic Surgery, They Wound Up in the Hospital or Alone at a Recovery House,” Dec. 23).

In addition to infections/sepsis and medication overdose, a person may die from fat embolus, in which a piece of fat tissue gains access to a blood vessel and is carried to the heart and lungs. As a pathologist, I’ve seen it (a young woman in her 20s).

People considering body sculpting should also be aware that fat tissue is less well-vascularized than, say, skin or muscle, and therefore is more susceptible to necrosis or infection.

— Gloria Kohut, Grand Rapids, Michigan


ACA Consumers Feel the Pain

The Government Accountability Office’s recent report on fraud in the ACA marketplace should be a wake-up call (“Plan-Switching, Sign-Up Impersonations: Obamacare Enrollment Fraud Persists,” Dec. 10). For those of us working directly with consumers, it merely confirms what we have been reporting to the Centers for Medicare & Medicaid Services for years — with little response.

It must also be acknowledged that Obamacare is broken. Premiums have risen sharply, plan options have narrowed, and affordability remains fragile for millions. Reform is clearly necessary, and reasonable people can debate how best to fix the system.

But consumers should not be punished for these failures — nor forced to absorb higher costs driven in part by CMS’ failure to enforce its own rules. Left unchecked, fraud distorts legitimate enrollment figures, inflates associated program costs, and obscures the true financial performance of the marketplace. The cost of that deception is not borne by fraudsters but ultimately paid by everyday Americans just trying to keep coverage.

We have submitted extensive, evidence-backed complaints on behalf of affected consumers documenting broker-driven fraud across the ACA marketplace. These reports include call recordings, enrollment data, agent National Producer Numbers, timelines, and consumer statements. They identify specific brokers, agencies, dates, and methods of abuse. Yet to our knowledge, CMS has not taken decisive enforcement action against even the most egregious offenders across multiple enrollment cycles. In most cases, CMS has not requested additional documentation at all.

The misconduct is neither isolated nor subtle. We have documented unauthorized agent-of-record changes, fabricated special enrollment periods, and impersonation — brokers posing as consumers to override existing coverage. Often fraudsters abuse the Enhanced Direct Enrollment links, including those powered by platforms such as HealthSherpa, where enrollment pathways are misused to obscure consumer intent, override trusted agents, or facilitate unauthorized enrollments. In some cases, recordings capture consumers explicitly stating they do not want to change plans, only to be enrolled anyway.

Consumers pay the price. Many discover that their coverage has been altered without consent, that their doctors are suddenly out-of-network, or that their premiums have increased. Others lose coverage altogether when fraudulent enrollments collapse under verification reviews. Meanwhile, the brokers responsible often continue operating under new agency names, repeating the same tactics.

The GAO report confirms that ACA broker fraud is systemic. Systems fail when oversight is weak and enforcement is optional. CMS’ inaction has sent a clear message: Documented fraud carries little risk with significant financial gain. Predictably, abuse has expanded.

We can debate.

— Jason Fine, Fort Lauderdale, Florida


A Different Kind of Nursing Home Nightmare

Unfortunately, we learned the hard way that long-term care facilities (nursing homes) saw an opportunity pre-covid to hire a couple of physical therapists and transition a room into a “rehabilitation center” and suddenly become certified LTC/rehab centers (“Broken Rehab: They Need a Ventilator To Stay Alive. Getting One Can Be a Nightmare,” Dec. 2). They could advertise as such to doctors and area hospitals, and they took in a new population of patients. Upon discharge from a hospital, many patients benefit from going to an inpatient rehab facility for a couple of weeks to perhaps a month. Insurance companies decide how long they will pay.

Before the covid pandemic, the LTC facilities had separate wings and rooms just for rehabilitation patients, and they were worked with every day, except weekends, by physical therapists. But then came covid, and the overall attendance of rehab patients went down, so many nursing homes had to close the rehab wings.

But the LTCs still needed the extra revenue, so they just put the rehab patients in with the regular nursing home patients. You can imagine where that went, for not only the patients but the staff. Everyone was a “nursing home patient,” and they were treated as such, especially by the staff.

If you’re a nurse who is used to caring for LTC patients, there’s nothing that is ever “in a hurry.” You schedule activities in with the other time or two you see each LTC patient. Oftentimes, rehab patients are a whole different patient with different, more frequent needs and more frequent medications.

You see the case managers that most hospitals employ to keep the assembly line moving, getting patients in one door and then out the exit door as fast as possible. You have to remember, insurance companies are only going to pay for that hospital patient to be cared for in the hospital for so long. Then the case managers swoop in, have a talk with the attending doctor and everyone (except the patient and family), and agree on a discharge date.

Now comes the list. This is a list that the hospital and the LTC/rehab centers agree on. The family and patient are told nothing about one facility over another. You just better have a facility picked out by the discharge date, or the case managers will do it for you.

So your loved one who needs only physical therapy is off to be most likely mixed in with the regular long-term care patients. And you had better be there every day to watch for your loved one. Twice out of three LTC/rehab visits my wife had, I stepped in and fought with the head of the facility to call the ambulance, because my wife was going downhill, medically, and they didn’t notice it because they weren’t used to noticing when non-LTC patients develop other medical problems, because often the case managers insist on discharging a rehab patient too soon, before they are stable. You need to find a facility that takes care of only rehabilitation patients and is licensed as such.

— Stephen Cripe, Monticello, Indiana


Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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What To Know About the CDC’s Baseless New Guidance on Autism /mental-health/cdc-autism-baseless-new-guidance-website/ Fri, 21 Nov 2025 19:29:23 +0000 /?post_type=article&p=2122315 The rewriting of a page on the CDC’s website to that vaccines may cause autism sparked a torrent of anger and anguish from doctors, scientists, and parents who say Health and Human Services Secretary Robert F. Kennedy Jr. is wrecking the credibility of an agency they’ve long relied on for unbiased scientific evidence.

Many scientists and public health officials fear that the Centers for Disease Control and Prevention’s website, which now baselessly claims that health authorities previously ignored evidence of a vaccine-autism link, foreshadows a larger, dangerous attack on childhood vaccination.

“This isn’t over,” said Helen Tager-Flusberg, a professor emerita of psychology and brain science at Boston University. She noted that Kennedy hired several longtime anti-vaccine activists and researchers to review vaccine safety at the CDC. Their study is due soon, she said.

“They’re massaging the data, and the outcome is going to be, ‘We will show you that vaccines do cause autism,’” said Tager-Flusberg, who leads an of more than 320 autism scientists concerned about Kennedy’s actions.

Kennedy’s handpicked vaccine advisory committee is set to meet next month to discuss whether to abandon recommendations that babies receive a dose of the hepatitis B vaccine within hours of birth and make other changes to the CDC-approved vaccination schedule. Kennedy has claimed — falsely, scientists say — that like asthma and peanut allergies, in addition to autism.

The revised CDC webpage will be used to support efforts to ditch most childhood vaccines, said Angela Rasmussen, a virologist at the University of Saskatchewan and co-editor-in-chief of the journal Vaccine. “It will be cited as evidence, even though it’s completely invented,” she said.

Kennedy personally ordered the website’s alteration, . The CDC’s developmental disability group was not asked for input on the changes, said Abigail Tighe, executive director of the National Public Health Coalition, a group that includes current and former staffers at the CDC and HHS.

Scientists ridiculed the site’s declaration that studies “have not ruled out the possibility that infant vaccines cause autism.” While upward of 25 large studies have shown no link between vaccines and autism, it is scientifically impossible to prove a negative, said David Mandell, director of the Center for Autism Research at Children’s Hospital of Philadelphia.

The webpage’s new statement that “studies supporting a link have been ignored by health authorities” apparently refers to work by vaccine opponent David Geier and his father, Mark, who died in March, Mandell said. Their research has and even ridiculed. David Geier is Kennedy hired to review safety data at the CDC.

Asked for evidence that scientists had suppressed studies showing a link, HHS spokesperson Andrew Nixon pointed to , some of which called for more study of a possible link. Asked for a specific study showing a link, Nixon did not respond.

Expert Reaction

Infectious disease experts, pediatricians, and public health officials condemned the alteration of the CDC website. Although Kennedy has made no secret of his disdain for established science, the change came as a gut punch because the CDC has always dealt in unbiased scientific information, they said.

Kennedy and his “nihilistic Dark Age compatriots have transformed the CDC into an organ of anti-vaccine propaganda,” said Amesh Adalja, a senior scholar at the Johns Hopkins Center for Health Security.

“On the one hand, it’s not surprising,” said Sean O’Leary, a professor of pediatrics and infectious disease at the University of Colorado. “On the other hand, it’s an inflection point, where they are clearly using the CDC as an apparatus to spread lies.”

“The CDC website has been lobotomized,” Atul Gawande, an author and a surgeon at Brigham and Women’s Hospital, told Ñî¹óåú´«Ã½Ò•îl Health News.

CDC “is now a zombie organization,” said Demetre Daskalakis, former director of the National Center for Immunization and Respiratory Diseases at the CDC. The agency has lost about a third of its staff this year. Entire divisions have been gutted and its leadership fired or forced to resign.

Kennedy has been “going from evidence-based decision-making to decision-based evidence making,” Daniel Jernigan, former director of the CDC’s National Center for Emerging and Zoonotic Infectious Diseases, said at a news briefing Nov. 19. With Kennedy and his team, terminology including “radical transparency” and “gold-standard science” has been “turned on its head,” he said.

Cassidy Goes Quiet

The new webpage seemed to openly taunt Sen. Bill Cassidy (R-La.), a physician who chairs the Senate Health, Education, Labor, and Pensions Committee. Cassidy cast the tie-breaking vote in committee for Kennedy’s confirmation after saying he had secured an agreement that the longtime anti-vaccine activist wouldn’t make significant changes to the CDC’s vaccine policy once in office.

The agreement included a promise, he said, that the CDC would not remove statements on its website stating that vaccines do not cause autism.

The new autism page is still headed with the statement “Vaccines do not cause Autism,” but with an asterisk linked to a notice that the phrase was retained on the site only “due to an agreement” with Cassidy. The rest of the page contradicts the header.

“What Kennedy has done to the CDC’s website and to the American people makes Sen. Cassidy into a total and absolute fool,” said Mark Rosenberg, a former CDC official and assistant surgeon general.

On Nov. 19 at the Capitol, before the edits were made to the CDC website, Cassidy answered several unrelated questions from reporters but ended the conversation when he was asked about the possibility Kennedy’s Advisory Committee on Immunization Practices might recommend against a newborn dose of the hepatitis B vaccine.

“I got to go in,” he said, before walking into a hearing room without responding.

Cassidy has expressed dismay about the vaccine advisory committee’s actions but has avoided criticizing Kennedy directly or acknowledging that the secretary has breached commitments he made before his confirmation vote. Cassidy has said Kennedy also promised to maintain the childhood immunization schedule before being confirmed.

The senator criticized the CDC website edits in a Nov. 20 , although he did not mention Kennedy.

“What parents need to hear right now is vaccines for measles, polio, hepatitis B and other childhood diseases are safe and effective and will not cause autism,” he said in the post. “Any statement to the contrary is wrong, irresponsible, and actively makes Americans sicker.”

Leading autism research and support groups, including the Autism Science Foundation, the Autism Society of America, and the , issued statements condemning the website.

“The CDC’s web page used to be about how vaccines do not cause autism. Yesterday, they changed it,” ASAN said in a statement. “It says that there is some proof that vaccines might cause autism. It says that people in charge of public health have been ignoring this proof. These are lies.”

What the Research Shows

Parents often notice symptoms of autism in a child’s second year, which happens to follow multiple vaccinations. “That is the natural history of autism symptoms,” said Tager-Flusberg. “But in their minds, they had the perfect child who suddenly has been taken from them, and they are looking for an external reason.”

When speculation about a link between autism and the measles, mumps, and rubella vaccine or vaccines containing the mercury-based preservative thimerosal surfaced around 2000, “scientists didn’t dismiss them out of hand,” said Tager-Flusberg, who has researched autism since the 1970s. “We were shocked, and we felt the important thing to do was to figure out how to quickly investigate.”

Since then, studies have clearly established that autism occurs as a result of genetics or fetal development. Although knowledge gaps persist, studies have shown that premature birth, older parents, viral infections, and the use of certain drugs during pregnancy — , evidence so far indicates — are linked to increased autism risk.

But other than the reams of data showing the health risks of smoking, there are few examples of science more definitive than the many worldwide studies that “have failed to demonstrate that vaccines cause autism,” said Bruce Gellin, former director of the National Vaccine Program Office.

The edits to the CDC website and other actions by Kennedy’s HHS will shake confidence in vaccines and lead to more disease, said Jesse Goodman, a former FDA chief scientist and now a professor at Georgetown University.

This opinion was echoed by Alison Singer, the mother of an autistic adult and a co-founder of the Autism Science Foundation. “If you’re a new mom and not aware of the last 30 years of research, you might say, ‘The government says we need to study whether vaccines cause autism. Maybe I’ll wait and not vaccinate until we know,’” she said.

The CDC website misleads parents, puts children at risk, and draws resources away from promising leads, said Paul Offit, director of the Vaccine Education Center at the Children’s Hospital of Philadelphia. “Kennedy thinks he’s helping children with autism, but he’s doing the opposite.”

Many critics say their only hope is that cracks in President Donald Trump’s governing coalition could lead to a turn away from Kennedy, whose team has reportedly tangled with some White House officials as well as Republican senators. Polling has also shown that much of the and does not consider him a health authority, and Trump’s own dramatically since he returned to the White House.

But anti-vaccine activists applauded the revised CDC webpage. “Finally, the CDC is beginning to acknowledge the truth about this condition that affects millions,” Mary Holland, CEO of Children’s Health Defense, the advocacy group Kennedy founded and led before entering politics, told . “The truth is there is no evidence, no science behind the claim vaccines do not cause autism.”

Céline Gounder, Amanda Seitz, and Amy Maxmen contributed to this report.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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Happy Open Enrollment Eve! /podcast/what-the-health-420-open-enrollment-obamacare-aca-shutdown-october-30-2025/ Thu, 30 Oct 2025 19:00:00 +0000 The Host
Julie Rovner photo
Julie Rovner Ñî¹óåú´«Ã½Ò•îl Health News Read Julie's stories. Julie Rovner is chief Washington correspondent and host of Ñî¹óåú´«Ã½Ò•îl Health News’ weekly health policy news podcast, "What the Health?" A noted expert on health policy issues, Julie is the author of the critically praised reference book "Health Care Politics and Policy A to Z," now in its third edition.

Open enrollment for 2026 Affordable Care Act insurance plans starts in most states Nov. 1, with no resolution in Congress about whether to continue more generous premium tax credits expanded under President Joe Biden or let them expire at the end of this year. It is unclear whether the backlash from millions of enrollees seeing skyrocketing premiums will move Democrats or Republicans to back away from entrenched positions that are keeping most of the federal government shut down.

Meanwhile, the Trump administration — having done away earlier this year with a Biden-era regulation that prevented medical debt from being included on consumers’ credit reports — is now telling states they cannot pass their own laws to bar the practice.

This week’s panelists are Julie Rovner of Ñî¹óåú´«Ã½Ò•îl Health News, Paige Winfield Cunningham of The Washington Post, Maya Goldman of Axios, and Alice Miranda Ollstein of Politico.

Panelists

Paige Winfield Cunningham photo
Paige Winfield Cunningham The Washington Post Read Paige's stories.
Maya Goldman photo
Maya Goldman Axios
Alice Miranda Ollstein photo
Alice Miranda Ollstein Politico

Among the takeaways from this week’s episode:

  • Tens of millions of Americans are bracing to lose government food aid on Nov. 1, after the Trump administration opted not to continue funding the Supplemental Nutrition Assistance Program during the shutdown. President Donald Trump and senior officials have made no secret of efforts to penalize government programs they see as Democratic priorities, to exert political pressure as the stalemate continues on Capitol Hill.
  • People beginning to shop for next year’s plans on the ACA marketplaces are experiencing sticker shock due to the expiration of more generous premium tax credits that were expanded during the covid pandemic. The federal government will also take a particular hit as it covers growing costs for lower-income customers who will continue to receive assistance regardless of a deal in Congress.
  • In state news, after killing a Biden-era rule to block medical debt from credit reports, the Trump administration is working to prevent states from passing their own protections. In Florida, doctors who support vaccine efforts are being muffled, and the state’s surgeon general says he did not model the outcomes of ending childhood vaccination mandates before pursuing the policy — a risky proposition as public health experts caution that recent measles outbreaks are a canary in the coal mine for vaccine-preventable illnesses.
  • And in Texas, the state’s attorney general, who is also running for the U.S. Senate as a Republican, is suing the maker of Tylenol, claiming the company tried to dodge liability for the medication’s unproven ties to autism. The lawsuit is the latest problem for Tylenol, with recent allegations undermining confidence in the common painkiller, the only one recommended for pregnant women to reduce potentially dangerous fevers and relieve pain.

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

Julie Rovner: Ñî¹óåú´«Ã½Ò•îl Health News’ “Many Fear Federal Loan Caps Will Deter Aspiring Doctors and Worsen MD Shortage,” by Bernard J. Wolfson.

Alice Miranda Ollstein: ProPublica’s “,” by Eric Umansky.

Paige Winfield Cunningham: The Washington Post’s “,” by Mark Johnson.

Maya Goldman: Ñî¹óåú´«Ã½Ò•îl Health News’ “As Sports Betting Explodes, States Try To Set Limits To Stop Gambling Addiction,” by Karen Brown, New England Public Media.

Also mentioned in this week’s podcast:

Click to open the transcript Transcript: Happy Open Enrollment Eve!

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.] 

Julie Rovner: Hello, from Ñî¹óåú´«Ã½Ò•îl Health News and, starting this week, from WAMU public radio in Washington, D.C., and welcome to “What the Health?” I’m Julie Rovner, chief Washington correspondent for Ñî¹óåú´«Ã½Ò•îl Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Oct. 30, at 10 a.m. As always, news happens fast, and things might’ve changed by the time you hear this. So here we go. Today, we are joined via video conference by Alice Miranda Ollstein of Politico. 

Alice Miranda Ollstein: Hello. 

Rovner: Maya Goldman of Axios News. 

Maya Goldman: Good to be here. 

Rovner: And we welcome back to the podcast one of our original panelists, Paige Winfield Cunningham of The Washington Post. So great to see you again. 

Winfield Cunningham: Hi, Julie. It’s great to be back. 

Rovner: Before we dive in, we have a little of our own news to announce. Starting this week, we’re partnering with WAMU, Washington D.C.’s public radio station, to distribute the podcast. That means you can also now find us on the NPR app. And welcome to all you new listeners. OK, onto the news. We are now 30 days into the federal government shutdown, and there is still no discernible end in sight. And this Saturday is not only the start of open enrollment in most states for the Affordable Care Act health plans, which we’ll talk more about in a minute. It’s also the day an estimated 42 million Americans will lose access to food stamps after the Trump administration decided to stop funding the SNAP [Supplemental Nutrition Assistance] program. That’s something the administration did keep funding during the last Trump shutdown in 2019, and, according to budget experts, could continue to do now. So what’s behind this? As I think I pointed out last week, not such a great look to deprive people of food aid right before Thanksgiving. 

Ollstein: So I think this follows the pattern we’ve seen throughout the shutdown, which is just a lot of picking and choosing of what gets funded and what doesn’t. The angle of this I’ve covered is that out of all of the uniformed forces of the government, the Trump administration dug around and found money to keep paying the armed members, but not the public health officers, who are also part of the uniformed branches of the country. And yeah, you’re seeing this in the SNAP space as well. President Trump and his officials have openly threatened to go after what they see as Democrat programs. So it’s just interesting what they consider in that category. But you’re seeing a lot of choices being made to exert maximum political pressure and force various sides of this fight to cave, but we’re not seeing that yet either. 

Rovner: Yeah, they are. I mean, it seems this is also backwards because it’s usually the Republicans who are shutting down the government, the Democrats who are trying to pressure them to reopen it. And now, of course, we’re seeing the opposite because the Democrats want the Republicans to do something about the Affordable Care Act subsidies, and the Republicans are going after previously what had been kind of sacrosanct bipartisan programs like food stamps and the WIC [the Special Supplemental Nutrition Program for Women, Infants, and Children] program, for pregnant and breastfeeding moms and babies. And now, apparently, they’re going to stop funding for Head Start, the preschool program for low-income families with kids. On the one hand, you’re right, they are programs that are very cherished by Democrats, but I feel like this whole shutdown is now sort of going after the most vulnerable people in America. 

Goldman: It’s also been interesting because [Health and Human Services] Secretary [Robert F.] Kennedy [Jr.] has tried to use SNAP as a vehicle for his Make America Healthy Again agenda, right? Trying to get states to limit the sugary drinks that their SNAP programs offer. And he’s, like, really touted that as part of the agenda. And now there does not seem to be any interest from HHS in speaking out about that. 

Rovner: Well, of course, and SNAP isn’t an HHS program. 

Goldman: Exactly. Exactly. 

Rovner: It’s a program in the Department of Agriculture, which is even more confusing, but you’re absolutely right. I mean, it’s odd that some of the things that he’s been pointing to are things that this administration is kind of trying to lay at the Democrats’ feet, as in, You want this program, reopen the government. So as I mentioned, Saturday is the start of Obamacare open enrollment in most of the states. And, Paige, you got a for plans in the 30 states that use the federal marketplace, which is now open for what we call window-shopping before open enrollment officially begins. What did you find? 

Winfield Cunningham: Yeah. So I got some documents at the end of last week showing that the average premium for the second-lowest-cost silver plan — which, of course, is what, we know … that’s what the subsidies are pegged to — is going up 30%, which is the second-highest premium increase. The highest we saw was 2017 to 2018. But this is a really, really significant increase. And of course, CMS [the Centers for Medicare & Medicaid Services] didn’t include that number in the document that it finally released this week. So the documents I saw had some sort of numbers like that, which were all stripped out of the official documents. But all of this is just so interesting because I was thinking about, back to 2017-2018, and the politics of this are so flipped right now because basically it was the Democrats then who didn’t want to talk about premium increases and the Republicans who were yelling about it. 

So it’s funny how that has changed. But I guess on the politics of this, it seemed for a while like Democrats were thinking maybe the Nov. 1 start of open enrollment would provide this out for them to pass the spending bill because they could say, like, OK, we tried. Now open enrollment has started, or the premiums are kind of baked, so we can’t really do anything to change it now. But I don’t think we’re going to have anything this week. It seems like both sides are pretty dug in still. I mean, I guess the other thing I would say on these costs, it’s really highlighting a weakness that we’ve known for a long time in the Affordable Care Act, which is that, like, yes, it made health insurance affordable for a lot of people, but there’s always been this smaller number of people that are above 400% federal poverty that have had no shield from insurance costs. They have the last four years, and now they’re not going to have one anymore. And it’s funny because Democrats are talking about this, but that’s sort of a problem they hadn’t wanted to acknowledge for a long time in the early years of the Affordable Care Act. And as you guys all know, there’s not going to be any political will for bipartisan work to create affordable options for these folks unless the subsidies get extended, which, of course, that doesn’t seem very likely at the moment from how things stand. 

Rovner: Yeah. Going back to what the Republicans sort of announced, their talking points, is that, well, first the premium increases aren’t that big and that the expiring extra subsidies aren’t that big a piece of it, both of which are actually kind of true. But, of course, that’s not where the sticker shock is coming from. The sticker shock is coming from the expiration of those tax credits that’s going to …  

So people who had been shielded from these very high premiums are no longer going to be shielded from them. And that’s why, if you look at social media, you see all these screenshots now of insurance that costs $3,000 a month for people who were paying $150 a month, which is obviously not affordable. Why is it so difficult to explain the difference? I’ve been working on different ways to explain it for the last three weeks. 

Goldman: I was trying to figure this out last night, when I was writing something for my newsletter today. And I think one of the really confusing parts about this is that, like Paige said, like Paige scooped, premiums are going up a certain amount, and that’s not actually what people are seeing. That’s not what almost anyone is going to actually face. Either you’re getting that huge sticker shock because you’re losing your subsidies that you had this year or you’re continuing to have subsidies, they’re not quite the same, but you’re still not going to pay a 30% increase. And so I think that that’s really confusing for me even, and hard to explain. 

Winfield Cunningham: I think one way to think about this is like the party that is going to bear the brunt of the premium costs to a large degree is the government because for people that are before 400% federal poverty, they are basically guaranteed under the Affordable Care Act that they’re not going to have to pay more for premiums over a certain percentage of their income. And so this just means, like, the subsidies are getting really expensive for the federal government, which goes back to the issue of kind of like why Democrats didn’t extend these enhanced premiums indefinitely — because it’s just expensive to do it. This is the government subsidizing private health insurance. And then it’s also significant again for those people over 400% poverty who had had a cap on what they would pay. I think it was 9.5% of their income under the enhanced … and now they have no cap. 

Rovner: I think 8.5% of their income, actually, under the enhanced premiums. 

Winfield Cunningham: Under the enhanced. OK. 

Rovner: It’s going to go back to 10%. 

Winfield Cunningham: Yeah. Yeah. But there’s no cap if you’re like over, over 400%. 

Rovner: 400%. 

Winfield Cunningham: Right. Yeah. Yeah. 

Rovner: That’s right. 

Winfield Cunningham: Yeah. But that’s why people are confused. And the other thing is, like, the administration is correct, that the vast majority of people in the marketplaces will continue to get subsidies. And we are basically going back to what the situation was before covid, but it’s that smaller number of people that are at the higher income levels. But the other thought I had was, of course, the health care industry and Democrats are talking a lot about this and spreading these huge premium increases far and wide and making sure everybody hears about them, but it’s like a relatively small number of people, if you think about it. 

And I think it’s only like a couple million people in the marketplaces who are at that higher income levels. And I wonder if that factors into Republicans’ calculations here, where they’re looking at how many voters are actually seeing these massive premium increases, having to pay for all of them. And in the whole scheme of the U.S. population, it’s not like a ton of people. So I just wonder if that’s one reason they’re sort of, like, seem to be increasingly dug in on this and very reticent to extend these subsidies. 

Rovner: Although I would point out that when the Affordable Care Act started, it was only a small number of people who lost their insurance, and that became a gigantic political issue. 

Winfield Cunningham: This is very true. 

Rovner: So it’s the people who get hurt who sometimes yell the loudest, although you’re right. I mean, at that point, the Democrats stayed the course and eventually, as Nancy Pelosi said, people came to like it. So it could work out the same way. It does help explain why everybody’s still dug in. Maya, you wanted to say something. 

Goldman: I was just going to say, I think it’ll be interesting to see, if subsidies aren’t extended, how this affects premiums next year for people and for the federal government, because if a couple million people drop out of the ACA marketplace because it’s too expensive, and those people tend to be healthier, then the remaining pool of people is sicker, and then that’s the death spiral, right? So … 

Rovner: Yeah. Although it is … 

Goldman: Obviously, that’s a lot of what ifs, but … 

Rovner: … only the death spiral that goes back to prior to covid, which — it was kind of stable at 12 million. I’m sort of amused by seeing Republicans complaining about subsidizing insurance companies. It’s like, but this was the Republicans’ idea in the first place, going back to the very origin of the ACA. 

Ollstein: And we should not forget that there is a group of people who are going to be losing all of their subsidies, not just the enhanced subsidies. And that’s legal immigrants, and that’s hundreds of thousands of people. So, like Maya said, that will probably mean a lot of younger, healthier people dropping coverage altogether, which will make the remaining pool of people more expensive to insure. So these things have ripple effects, things that impact one part of the population inevitably impact other parts of the population. And again, these are legal tax-paying immigrants with papers — will be subject to the full force of the premium increases because they won’t have any subsidies. 

Rovner: Yes, our health system at work. All right, we’re going to take a quick break. We will be right back with more health news.  

Moving on, the federal government is technically shut down, but the Trump administration is still making policy. You might remember last summer, a federal judge blocked a Biden administration rule that prevented medical debt from appearing on people’s credit reports. The Trump administration chose not to appeal that ruling, thus killing the rule. Now the administration is going a step further — this week, putting out guidance that tries to stop states from passing their own laws to prevent medical debt from ruining people’s credit, and often their ability to rent, or buy a house, or purchase a car, or even sometimes get a job. According to the acting head of the federal Consumer Financial Protection [Bureau], Russell Vought — yes, that same Russell Vought who’s also cutting federal programs as head of the Office of Management and Budget — states don’t have the authority to restrict medical debt from appearing on credit reports, only the federal government does, which of course he has already shown he doesn’t want to do. Who does this help? I’m not sure I see what the point is of saying we’re not going to do it and states, you can’t do it either. Part of this, I know, is Russell Vought has made no secret of the fact that he would like to undo as much of the federal government as he can. In this case, is he doing the bidding of, I guess it’s the people who extend credit, who, I guess, want this information, want to know whether people have medical debt, think that that’s going to impact whether or not they can pay back their loans, or is this just Russell Vought being Russell Vought? 

Goldman: I guess, in theory, maybe it goes back to the idea that if you have consequences for medical debt, then people will pay their bills, and maybe that would help the health systems in the long run. But I also think that — I don’t know what health systems have said about this particular move, to be honest — but I think there’s an interest in making medical debt less difficult for people to bear in the whole health system. So I’m not sure how popular that is. 

Rovner: Yeah. Yes. Another one of those things that’s sort of like, we’re going to hurt the public to thwart the Democrats, which kind of seems to be an ongoing theme here. Well, as we tape this morning, the Senate health committee was supposed to be holding a hearing on the nomination of RFK Jr. MAHA ally Casey Means to be U.S. surgeon general. Casey Means was going to testify via video conference because she is pregnant, but, apparently, she has gone into labor, so that hearing is not happening. We will pick up on it when that gets rescheduled. Perhaps she will appear with her infant. 

Back at HHS, a U.S. district judge this week indefinitely barred the Trump administration from laying off federal workers during the shutdown, but at the Centers for Disease Control and Prevention, it appears the damage is already done. The New York Times’ global health reporter, Apoorva Mandavilli, reports that the agency appears to have had its workforce reduced by a third and that the entire leadership now consists of political appointees loyal to HHS secretary Kennedy, who has not hidden his disdain for the agency and the fact that he wants to see it dissolved and its activities assigned elsewhere around the department. What would that mean in practice if there, in effect, was no more CDC? 

Winfield Cunningham: Hopefully we don’t have another pandemic. There’s just a lot of stuff the CDC does. And it’s been really confusing to follow these layoffs because in this last round, I remember trying to figure out with my colleague Lena Sun how many people were sent notices and then hundreds were sort of, those were rescinded and they were brought back. But yeah, I mean, I think we’re going to see the effects of this over the next couple of years. When I’ve asked the administration broadly about the reductions to HHS, what they say is that the agency overall has grown quite a lot in its headcount through the pandemic, which is true. I think they got up to like 90,000 or so. And then, according to our best estimates, maybe they’re back around 80,000, although I’m not entirely sure if that’s accurate. Again, it’s really been hard to track this. 

Rovner: Yeah. I’ve seen numbers as low as 60,000. 

Winfield Cunningham: It may be lower. Yeah. Yeah. So I think actually the 80,000, that may have been the headcount before the pandemic. Anyway, all that to say, it did grow during the pandemic, and that’s kind of the argument that they’re making, is that they’re just bringing it back to pre-pandemic levels. 

Rovner: But CDC, I mean, it really does look like they want to just sort of devolve everything that CDC does to the states, right? I mean, that we’re just not going to have as much of a federal public health presence as we’ve had over these past 50, 60 years. 

Winfield Cunningham: For sure. They’ve definitely targeted CDC. I mean, they mostly left CMS alone and FDA because, statutorily, I think it’s easier for them to shrink CDC, but it definitely is going to have massive effects over the next couple of years, especially as we see future pandemics. 

Ollstein: And the whole argument about returning to pre-covid, that doesn’t fit with what they’re actually cutting. I mean, they’re gutting offices that have been around for decades — focused on smoking, focused on maternal health, all these different things. And so this is not just rolling back increases from the past few years. This is going deeper than that. 

Winfield Cunningham: Well, yeah, it’s not like they’re just cutting the roles that were added since the pandemic. 

Ollstein: Exactly. 

Rovner: It’s not a last-in, first-out kind of thing. Well, as I said, since it looks like public health is now mostly going to be devolved to the states, let’s check in on some state doings. In Florida, where state Surgeon General Joseph Ladapo last month announced a plan to end school vaccination mandates. My Ñî¹óåú´«Ã½Ò•îl Health News colleague Arthur Allen has a story about how health officials, including university professors and county health officials, who actually do believe in vaccinating children, are effectively being muzzled, told they cannot speak to reporters without the approval of their supervisors, who are likely to say no. Seeing the rising number of unvaccinated children in a state like Florida, where so many tourists come and go, raising the likelihood of spreading vaccine preventable diseases, this all seems kind of risky, yes? 

Goldman: Yes. That was a fantastic article from your colleague, and there was a really illuminating line, which I think had been reported before, but a reporter asked the surgeon general if he had done any disease modeling before making the decision. And he said, Absolutely not, because this to him was a personal choice issue and not a public health issue. And I think that just goes to show that we have no idea what is going to happen as a result of this public health decision and it could have massive ripple effects. 

Rovner: But what we are already seeing are the rise of vaccine-preventable diseases around the country. I mean, measles, first in Texas, now in South Carolina; whooping cough in Louisiana; I’m sure I am missing some, but we are already seeing the consequences of this dwindling herd immunity, if you will. Alice, you’re nodding your head. 

Ollstein: Yeah. And I’ve heard from experts that measles is really sort of the canary in the coal mine here because it’s so infectious. It spreads so easily. You can have an infected person cough in a room and leave the room, and then a while later, someone else comes in the room and they can catch it. Not all of these vaccine-preventable illnesses are like that. So the fact that we’re seeing these measles outbreaks is an indication that other things are probably spreading as well. We’re just not seeing it yet, which is pretty scary. 

Rovner: And of course, one of the things that the CDC does is collect all of that data, so we’re probably not seeing it for that reason, too. Well, meanwhile, in Texas, Attorney General and Republican Senate candidate Ken Paxton is suing the makers of Tylenol. He’s claiming that Johnson & Johnson spun off its consumer products division — that includes not just Tylenol, but also things like Band-Aids and Baby Shampoo — to shield it from liability from Tylenol’s causing of autism, something that has not been scientifically demonstrated by the way — even Secretary Kennedy admits that has not been scientifically demonstrated. My recollection, though, is that Johnson & Johnson was trying to shield itself from liability when it spun off its consumer products division, but not because of Tylenol, rather from cancer claims related to talc in its eponymous Baby Powder. So what’s Paxton trying to do here beyond demonstrate his fealty to President Trump and Robert F. Kennedy Jr.? 

Ollstein: I was interested to see some GOP senators distancing themselves from the Texas lawsuit and saying like, Look, there is no proof of this connection and this harm. Let’s not go crazy. But as I’ve reported, it’s just very hard to get good information out to people because there just isn’t enough data on the safety of various drugs, because testing drugs on pregnant women was always hard and it’s gotten even harder in recent years. And so, based on the data we have, this is a correlation, not causation. But it would be easier to allay people’s fears if we had more robust and better data. 

Rovner: Yeah. Does a lawsuit like this, though, sort of spread the … give credence to this idea that — I see you nodding, Maya — that there is something to be worried about using Tylenol when pregnant? Which is freaking out the medical community because Tylenol is pretty much the only drug that currently is recommended for pregnant women to deal with fever and pain. 

Goldman: Yeah. I think some of my colleagues have reported on the concern of another death spiral here, right? Where people get concerned, perhaps without basis, of taking Tylenol or any other drugs, vaccines even, because there are lawsuits and then the makers of these drugs say it’s not worth it for us to make these anymore. And then they don’t make them. And then it’s like a bad cascade of events. And so it’s obviously too soon to see if that’s what’s happening here, but it’s certainly something to watch. 

Rovner: But as we’ve pointed out earlier, not treating, particularly, fever can also cause problems. So … 

Ollstein: Right. Basically all of the alternatives are more dangerous. Not taking anything to treat pain and fever in pregnancy can be dangerous and can lead to birth effects. And taking other painkillers and fever reducers are known to have dangerous side effects. Tylenol was the safest option known to science. And now that that’s being questioned in the court of public opinion, people are worried about these ramifications. 

Winfield Cunningham: I think about the effect on moms who have kids with autism who are now thinking back to their pregnancies and thinking, Oh my gosh, how much Tylenol did I take? I know I took, I had pregnancies that I took plenty of Tylenol during. My nephew has autism, and I was talking to my sister about this, and she was like, “I took Tylenol.” And what they’re doing is, I guess, other reflection I have on it is, in general, there’s just less research on most things than we need. And there are some studies showing a correlation, which as we all know is not causation. And what it looks like the administration did was they took those tiny little nuggets of suggestions and have blown them up into this overly confident declaration of Tylenol and pregnancy and probably unnecessarily causing many women to blame themselves or think, Should I have done something differently during my pregnancy? when they were really just doing what their doctor recommended they do. 

Ollstein: I’m surprised that we haven’t seen legal action from Tylenol yet. I imagine we might at some point, especially if there is some kind of government action around this, like a label change. I think we will see some sort of legal action from the company because this is absolutely going to impact their bottom line. 

Rovner: Yeah. All right. Well, finally this week, more news on the reproductive health front. California announced it would help fund Planned Parenthood clinics so they can continue providing basic health services, as well as reproductive health services, after Congress made the organization ineligible for Medicaid funds for a year and the big budget bill passed last summer. California’s the fourth state to pitch in joining fellow blue states Washington, Colorado, and New Mexico. Meanwhile, family planning clinics in Maine are closing today due to that loss of Medicaid funding. And at the same time, the Health and Human Services Office of Population Affairs, which oversees the federal family planning program, Title X, is down apparently from a staff of 40 to 50 to a single employee, . Is contraception going to become the next health care service that’s only available in blue states, Alice? 

Ollstein: So Title X has been in conservatives’ crosshairs for a long time. There have been attempts on Capitol Hill to defund it. There have been various policies of various administrations to make lots of changes to it. Some of those changes have really limited who gets care. And so it’s been a political football for a while. Of course, Title X doesn’t just do contraception. It’s one of the major things they do, providing subsidized and sometimes even free contraception to millions of low-income people around the country. But they also provide STI testing, even some infertility counseling and other things, cancer screenings. And so this is really hitting people at the same time as the anticipated Medicaid cuts, and at the same time Planned Parenthood clinics are closing because they got defunded. And so it’s just one on top of another in the reproductive health space. Each one alone would be really impactful, but taken all together, yeah, there’s a lot of concern about people losing access to these services. 

Winfield Cunningham: I think the politics of this are more interesting to me than the practical effect. I mean, under the ACA, birth control has to be covered, right? by marketplace plans. Generally speaking, if people have insurance, they do have coverage for a range of birth control. But the Title X program is interesting because it seems to like overlap between the MAHA priorities and the social conservatives. Of course, as Alice said, this has long been a target of social conservatives. I think in Project 2025 called for any Title X, I believe. And then there’s this current in the MAHA movement that’s kind of like anti-hormonal birth control and there’s also these kinds of streams of pronatalist people, of have more babies, don’t take birth control. So that’s kind of interesting to me because there’s this larger narrative I think in HHS right now of the RFK MAHA people versus the traditional conservative, anti-abortion people. So that’s just like one program where I see overlap between the two. 

Rovner: One of my favorite pieces of congressional trivia is that Title X has not been reauthorized since 1984, which, by the way, is before I started covering this. But I’ve been doing this 39 years and I have never covered a successful reauthorization of the Title X program. So it’s obviously been in crosshairs for a very, very long time. Maya, did you want to add something? 

Goldman: I was just going to say to Paige’s point, telling women that they can’t take any painkillers during pregnancy is not a good way to raise the birth rate. 

Rovner: Yes. That’s also a fair point. Well, meanwhile, red states are trying to expand the role of crisis pregnancy centers, which provide mostly nonmedical services and try to convince those with unplanned pregnancies not to have abortions. In Wyoming, state lawmakers are pushing a bill that would prohibit the state or any of the localities from regulating those centers “based on the center’s stance against abortion.” This comes after a similar proposal became law in Montana, the efforts being pushed by the anti-abortion group Alliance Defending Freedom. Is the idea here to have crisis pregnancy centers replace these Title X clinics and Planned Parenthoods? 

Ollstein: I think there are a lot of people that would like to see that, but, as you said, they do not provide the same services, so it would not be a one-to-one replacement. Already, there are way more crisis pregnancy centers around the country than there are Planned Parenthood clinics, for example, but that doesn’t mean that everyone has access to all the services they want. 

Rovner: And many of these crisis pregnancy centers don’t have any medical personnel, right? I mean, some of them do, but … 

Ollstein: It’s really a range. I mean, some have a medical director on staff, or maybe there’s one medical person who oversees several clinics, some do not. Some offer ultrasounds, some don’t, some just give pamphlets and diapers and donated items. It’s just really a range around the country. And states have also been grappling with how much to, on the conservative side, support and fund such centers. And on the other side, states like California have really gone to battle over regulating what they tell patients, what they’re required to tell patients, what they can’t tell patients. And that’s gotten into the courts and they’ve fought over whether that violates their speech rights. And so it’s a real ongoing fight. 

Rovner: Yes, I’m sure this will continue. All right, that is the news for this week. Now it’s time for our extra-credit segment. That’s where we each recognize a story we read this week we think you should read too. Don’t worry if you miss it; we’ll put the links in our show notes on your phone or other mobile device. Maya, why don’t you go first this week? 

Goldman: Sure. So this story is from Ñî¹óåú´«Ã½Ò•îl Health News and New England Public Media. It’s called “As Sports Betting Explodes, States Try To Set Limits To Stop Gambling Addiction,” by Karen Brown. And I think this stood out to me because I was just in Vegas last week for health, but this, I think, is a really interesting issue to explore through a public health lens, the issue of sports betting and betting addiction. And there are states that are trying to do a lot of work around this and just organizations. And then of course the gaming companies themselves have their own pushback on that, and I think this story just lays it out really well and it’s an important issue that gets very overlooked. 

Rovner: Yeah, it is a public health issue, an interesting one. Alice? 

Ollstein: I chose a story from ProPublica by reporter, Eric Umansky, and it’s called “.” So this is one of many examples that you could give of policies intended to target transgender folks having spillover effects and impacting cisgender folks, too. In this instance, it’s now harder for male veterans to qualify to get treatment for breast cancer. Men can get breast cancer. Let’s just say that. Men can and do get breast cancer, and it can be harder to detect and very lethal, and obviously very expensive to treat if you don’t have coverage. And so this story has a lot of sad quotes from folks who are losing their coverage, especially because they likely acquired cancer by being exposed during their service to various toxic substances. And so I think, yeah. 

Rovner: Yeah. A combination of a lot of different factors in that story. 

Ollstein: Definitely. 

Rovner: Paige? 

Winfield Cunningham: Yeah. So my story is by, actually, my colleague Mark Johnson. I sit next to him at The [Washington] Post, and the headline is “.” I was really struck by this story because it talks about how patients with advanced lung cancer, they were given the covid vaccines and it somehow had the effect of supercharging their immune systems. And, actually, their median survival rates went up by 17 months compared with those that weren’t given the vaccines. And, of course, this administration has really gone after the covid vaccines and the mRNA research, in particular, and canceled $500 million in funding for mRNA research. And all of the ACIP’s [Advisory Committee on Immunization Practices’] moves on vaccines have gotten so much attention. But I think the thing that also is going to be perhaps even more impactful is pulling back on this really promising research, because it has sort of become politicized because the covid vaccines have become politicized. And it seems a shame that we’re pulling back on this really promising research. So I thought that was a really interesting story by my colleague. 

Rovner: Yes. Yet another theme from 2025. My extra credit this week is from my Ñî¹óåú´«Ã½Ò•îl Health News colleague Bernard J. Wolfson, and it’s called “Many Fear Federal Loan Caps Will Deter Aspiring Doctors and Worsen MD Shortage.” And it’s a good reminder about something we did talk about earlier this year when the Republican budget bill passed. It limits federal grad school loans to $50,000 per year at a time when the median tuition for a year in medical school is more than $80,000. The idea here is to push medical schools to lower their tuition, but in the short run, it’s more likely to push lower-income students either out of medicine altogether or to require them to take out private loans with more stringent repayment terms, which could in turn push them into pursuing more lucrative medical specialties rather than the primary care slots that are already so difficult to fill. It’s yet another example of how everybody agrees on a problem: Medical education is way too expensive in this country. But nobody knows quite how to fix it.  

OK. That is this week’s show. Thanks this week to our editor, Emmarie Huetteman, and our producer-engineer, Francis Ying. A reminder, “What the Health?” is now available on WAMU platforms, the NPR app, and wherever else you get your podcasts, as well as, of course, kffhealthnews.org. If you already follow the show, nothing will change. The podcast will show up in your feed as usual. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can find me at X, , or on Bluesky, . Where are you folks hanging these days? Maya? 

Goldman: I am on X as and I’m also on . 

Rovner: Alice? 

Ollstein: on Bluesky and on X.  

Rovner: Paige? 

Winfield Cunningham: I am still on X. 

Rovner: Great. We will be back in your feed next week. Until then, be healthy. 

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Inside the High-Stakes Battle Over Vaccine Injury Compensation, Autism, and Public Trust /health-industry/autism-vaccine-injury-compensation-program-public-health-trust/ Mon, 06 Oct 2025 09:00:00 +0000 /?post_type=article&p=2097921 Department of Health and Human Services Secretary has floated a seismic idea: adding autism to the list of conditions covered by the Vaccine Injury Compensation Program. The program, known as VICP, provides a system for families to file claims against vaccine providers in cases in which they experience severe side effects. Kennedy has also suggested broadening the definitions of two serious brain conditions — encephalopathy and encephalitis — so that autism cases could qualify.

Either move, experts warn, would unleash a flood of claims, threatening the program’s financial stability and handing vaccine opponents a powerful new talking point.

Legally, HHS “is required to undergo notice and comment rulemaking to revise the table,” said Richard Hughes, a law firm partner who teaches at George Washington University. The that the U.S. government accepts as presumed to be caused by a vaccine if those injuries occur within a certain time window. If someone can show they meet the criteria, they have a simpler path to securing compensation without having to prove fault. Autism is not in the table because a link between vaccines and autism has been .

If autism is added, Hughes explained, the VICP could face “an exorbitant number of claims that would threaten the viability of the program.”

Asked about its possible plans, an HHS spokesperson told CBS News the agency does not comment on future or potential policy decisions.

Carole Johnson, former administrator of the Health Resources and Services Administration, which oversees VICP, cautioned that the system is already overburdened: “The backlog is not just a function of management, it’s built into the statute itself. That’s important context for any conversation about adding new categories of claims.”

Dorit Reiss, a law professor at the University of California College of the Law-San Francisco, said that any such : “This can, and likely will, be used to cast doubt on vaccines.”

Compensation Without Causation

The Vaccine Injury Compensation Program was born of crisis. In 1982, “,” a television documentary, aired nationwide, alleging routine childhood shots were causing seizures, brain damage, and even sudden infant death. The program alarmed parents and triggered a surge of lawsuits against vaccine makers.

“That led to a flood of litigation against vaccine makers,” recalled Paul Offit, a pediatric infectious disease specialist and vaccine inventor at the University of Pennsylvania. “I mean, to the point that it drove them out of the business. … By the mid-1980s, there were $3.2 billion worth of lawsuits against these companies.”

Were it not for the VICP, Offit said, “We wouldn’t have vaccines for American children. The companies — it wasn’t worth it for them.”

The National Childhood Vaccine Injury Act of 1986 created a no-fault system. Families who believed a vaccine caused harm could file a claim; if the injury appeared on the table within a set time frame, compensation was automatic. If not, claimants could present medical evidence. The system had two purposes: provide compensation and protect the vaccine supply.

From the beginning, the table was understood not as a scientific document but as a legal tool.

“It’s a legal document and things can be included for policy reasons even if the causation evidence is weak,” Reiss said. She explained, “The program is designed to be generous, to compensate in cases of doubt.”

But, she said, “autism is not in that category. The science is clear. Adding it would be pure politics.”

This tension — between law, science, and public perception — has defined the program for nearly four decades.

What Expansion Would Mean in Practice

Since 1988, shows more than 25,000 petitions to the VICP have been adjudicated; of those, 12,019 were granted compensation and 13,007 were dismissed. About 60% of compensated cases involved negotiated settlements in which HHS drew no conclusion about the cause. Over the same period, billions of vaccine doses were safely administered to millions of Americans.

Adding autism to the VICP table would change that picture overnight.

Federal estimates suggest up to 48,000 children could qualify immediately under a “profound autism” standard, with potential payouts averaging $2 million per case, at an initial cost of nearly $100 billion, followed by annual totals of about $30 billion a year — , a new analysis finds.

“Any case where the symptoms appeared in the past eight years and the parents blame vaccines,” Reiss said. “I don’t know how many that would be. The fund has a surplus of over $4 billion. One seriously disabled child’s care can cost millions, so a significant number, say 100,000 compensations, might exhaust it.”

Furthermore, with only eight special masters handling cases, the system would also be paralyzed by backlogs.

The stakes are not just fiscal. If the fund collapses under the weight of autism claims, vaccine makers may question whether producing vaccines for the U.S. market is worth the risk. That would mirror the crisis of the 1980s, which led to the establishment of the VICP.

Autism and the Courts

In the late 1990s and early 2000s, Andrew Wakefield’s now-retracted paper alleging a link between the MMR vaccine and autism fueled a surge of VICP claims. By 2002, the VICP was swamped with petitions alleging vaccines had caused autism. The court consolidated thousands of cases into the Omnibus Autism Proceedings, selecting a handful of test cases to decide them all.

After years of hearings and expert testimony, the conclusion was unequivocal: vaccines do not cause autism. In 2010, the court ruled against petitioners on every theory of causation. The U.S. Court of Federal Claims affirmed, and the Court of Appeals upheld, the decision.

“That precedent is binding,” said Richard Hughes, a vaccine law expert at George Washington University and former VICP legal counsel. “Autism was litigated thoroughly and rejected. That still carries weight in the court today.”

The Ghost of Hannah Poling

Yet, the vaccine-autism debate has never quite faded. In 2008, the government conceded a case involving Hannah Poling, a girl with a rare mitochondrial disorder who developed autism-like symptoms after vaccination. Officials stressed the concession was specific to her condition, not evidence of a general link. But headlines told another story: “.”

The Poling case fueled years of confusion.

Autism Science Today

The science is clearer than ever. Autism begins early in pregnancy, not in toddlerhood when most vaccines are given.

“Vaccinations … happened around the time families were recognizing symptoms of autism in their children,” said Catherine Lord, a UCLA clinical psychologist and specialist in autism diagnosis. “However, we now know that autism begins much earlier, likely as the fetus develops during pregnancy, so it cannot be an explanation.”

Peter Hotez, a pediatric infectious disease specialist and vaccine scientist at the Baylor College of Medicine who is also the father of a young adult with autism, underscores that point: “The drivers of autism are genetics and, in rare cases, environmental exposures during pregnancy, not vaccines. We’ve been over this ground for decades, and the evidence is overwhelming.”

Sarah Despres, former legal counsel to the secretary of Health and Human Services in the Biden administration and now a consultant to nonprofit organizations on immunization policy, adds that the compensation program itself is often misunderstood.

“The table was originally written as a political document,” she said. “The purpose of the program was to be swift, generous, and fair. … There would be cases that may not be caused by the vaccine but would be compensated if you went through this table injury scheme, where you don’t have to prove causation.”

What’s at risk: Harm From the Diseases Themselves

The stakes are not abstract. Measles, one of the on Earth, spreads so efficiently that one infected child can transmit it to 90% of susceptible contacts. Before vaccinations began in the 1960s, annually in the U.S., killing hundreds and causing thousands of cases of encephalitis and lifelong disability. Complications included pneumonia, brain swelling, and, in rare cases, a fatal degenerative brain disorder called subacute sclerosing panencephalitis, or SSPE, that can strike years later. This year, a after contracting measles in infancy, before being eligible for vaccination.

Mumps was once a near-universal childhood illness. Though often dismissed as mild, it can cause sterility in men, meningitis, and permanent hearing loss. Outbreaks on college campuses, as recently as the 2000s, showed how quickly it can return when vaccination rates slip.

Rubella, also known as German measles, is mild in most children, but can be devastating during pregnancy. Congenital Rubella Syndrome, or CRS, caused waves of tragedy before the development of the vaccine: Thousands of babies each year were born blind, deaf, with heart defects, or with intellectual disabilities. In medical texts, autism itself is listed as one of CRS’ sequelae, or possible consequences — proof that rubella infection, not vaccination, can contribute to developmental disorders.

Measles, mumps, and rubella “are not trivial,” said Walt Orenstein, former head of the Centers for Disease Control and Prevention’s immunization program. “Fever, high fever, is common … and they have frequent complications.”

And yet, as these diseases fade from living memory, a counternarrative has gained traction. On Sept. 29, the nonprofit Physicians for Informed Consent, a group that disputes the scientific consensus on vaccines, announced it had mailed its “Silver Booklet” on vaccine safety to every member of Congress, as well as to President Donald Trump and Vice President JD Vance. The book claims that “vaccines are not proven to be safer than the diseases they intend to prevent,” and calls on federal leaders to punish states that restrict vaccine exemptions. (The booklet isn’t free. The group sells copies for $25 on Amazon.)

Scientists say this framing misrepresents the basic math of risk. “Measles is one of the most important infectious diseases in human history,” notes “,” the field’s authoritative textbook. “The widespread use of measles vaccines in the late 20th and early 21st centuries led to a further marked reduction in measles deaths. Measles vaccination averted an estimated 31.7 million deaths from 2000 to 2020.”

Kennedy’s possible move to expand the Vaccine Injury Compensation Program hinges on casting doubt — on suggesting that science is unsettled, that vaccines may be riskier than diseases.

“One tactic used to argue that vaccines cause autism is the use of compensation decisions from the National Vaccine Injury Compensation Program to claim such a link,” said Reiss of UC Law-San Francisco. “Even the cases that most closely address the question of vaccines and autism do not show the link that opponents claim exists, and many of the cases used are misrepresented and misused.”

Offit underscores the danger on the perception side. “When people see the Vaccine Injury Compensation program, they assume that any money that is given is because there was a vaccine injury,” he said.

Kathryn Edwards, an expert in pediatric infectious diseases and vaccine safety at Vanderbilt University, said, “Expanding compensation for issues that are not clearly related to vaccines … suggests that these conditions are related to vaccines when they are not.” She compared it to the , a preservative dropped from most childhood vaccines to ease public fears, despite no evidence of harm. “Now, we are still suffering from that action.”

Public health experts stress that such narratives invert reality. The very diseases being downplayed once killed or disabled tens of thousands of American children each year. As pediatrician, psychiatrist, and medical historian Howard Markel put it: “Back a hundred years ago, everybody lost a kid or knew a kid who died of one of these diseases. … We never conquer germs, we wrestle them to a draw. That’s the best we do. And so this is a real … handicap to the other side, the microbes who live to infect.”

Families and the Future

The hardest voices to reckon with are . Parents of autistic children often feel abandoned — unsupported by disability programs, exhausted by care needs, searching for answers. Kennedy’s appeal to them is emotional, not scientific.

Reiss noted that families deserve far more support but argues that it shouldn’t come through VICP.

“The program is to award compensation to those injured by vaccines,” she said. “We should have more direct support — disability funding, disability aid. Kennedy has been taking HHS in the opposite direction, cutting services where we need more.”

Despres made the same point: “The goal of the program really was if there’s a close call, we’re going to err on the side of compensation. … And it’s really important that everyone understands that compensation does not mean that the vaccine actually caused the injury. … And I think we have seen statistics around the compensation program misused by those who would want to sow distrust in vaccines, to say vaccines are unsafe, when in fact … that’s not what this is.”

UCLA’s Lord urged a shift in focus. “For the last 50 years, science has focused on the biological causes of autism, which has led to great progress, especially in genetics,” she said. Of Secretary Kennedy, she said, “He could help more by acknowledging the value of science, but also the need to better attend to the actual lives of autistic people and their families.”

What Comes Next?

If Kennedy decides to move forward with such a plan, HHS would need to draft a rule, open it to public comment, and then defend the change in court. The pushback will be fierce: from scientists, from public health leaders, and from families who fear being misled yet again.

The debate over adding autism to the Vaccine Injury Table is not just a policy debate. The program was built on the principle of compensation without causation, a fragile balance designed to sustain both trust and supply. Adding autism could collapse that distinction entirely.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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Off-Label Drug Helps One Boy With Autism Speak, Parents Say. But Experts Want More Data. /health-industry/autism-treatment-off-label-generic-drug-leucovorin-fda-children-health/ Fri, 26 Sep 2025 09:00:00 +0000 /?p=2094453&post_type=article&preview_id=2094453

Caroline Connor’s concerns about her son’s development began around his 1st birthday, when she noticed he wasn’t talking or using any words. Their pediatrician didn’t seem worried, but the speech delay persisted. At 2½, Mason was .

The Connors went on a mission, searching for anything that would help.

“We just started researching on our own. And that’s when my husband Joe came across Dr. Frye in a research study he was doing,” Caroline said.

Richard Frye, a pediatric neurologist, is one of many doctors searching for treatments that can help . He’s studying leucovorin, an inexpensive, generic drug derived from folic acid, also known as folate or vitamin B9. Leucovorin is currently prescribed to ease the side effects of cancer chemotherapy. Pregnant women are prescribed multivitamins with folic acid to prevent neural tube defects. The neural tube develops into the brain and spinal cord.

Leucovorin isn’t a cure for autism, but “it could really have a substantial impact on a very good percentage of children with autism,” Frye said.

This week, the FDA began the process of approving leucovorin as a treatment for autism, despite a lack of any large, phase 3 clinical trials.

“We do have some good preliminary evidence that leucovorin helps,” Frye said. “But normally, the FDA would want to see at least a couple of large phase 3, placebo-controlled, randomized clinical trials. Right now, we only have phase 2B studies, and more research is needed to answer key questions, like how to dose it correctly, when to start, and which children will benefit most.”

The theory behind the drug’s use for autism postulates that some children have a blockage in the transport of folic acid into the brain that potentially contributes to some of the neurological problems associated with the disorder. Leucovorin bypasses that blockage and can help some autistic kids improve their ability to speak. Three randomized controlled trials of leucovorin to treat autism have shown positive effects on speech.

Frye cited five blinded controlled studies to date, all positive, although at different doses and in different populations. Still, he said, “the evidence isn’t yet where it would normally be for a drug.”

Frye said he was “disappointed” that his group had not received funding from the National Institutes of Health’s new and that he was not consulted on the design of upcoming leucovorin trials. “It’s strange, because I’ve been leading this work for decades,” he noted.

The Science of Cerebral Folate Deficiency

Cerebral folate deficiency, or a deficiency of folate in the brain, was . Ramaekers found that some kids with neurodevelopmental disorders had normal levels of folic acid in the blood, but low levels in their spinal fluid. He then teamed up with researcher Edward Quadros, who had been studying how an autoimmune disorder might lead to a blockage of folic acid transport into the brain. Ramaekers and Quadros found that autoantibodies against the folate receptor alpha (FR⍺), which transports folic acid from the blood into the brain and the placenta, might cause abnormal fetal brain development and some autism spectrum disorders.

One study found that over 75% of children with autism spectrum disorder , compared with 10%-15% of healthy kids. There is evidence of a for developing FR⍺ autoantibodies. While environmental and immune system dysregulation may also play a role, there’s no evidence to suggest that vaccines cause the development of FR⍺ autoantibodies.

The brain has a backup system to the FR⍺ known as the reduced folate carrier, or RFC. The RFC isn’t as efficient a transporter as the FR⍺, but it can transport leucovorin, also known as folinic acid, into the brain. Enzymes in the brain convert leucovorin into the active form of folate.

Treatment with leucovorin in kids with cerebral folate deficiency, or CFD. In one study led by Frye, one-third of such kids in their speech and other behavior when treated with leucovorin. Two randomized trials conducted in France and India showed similar results. A is available to help may most likely respond to leucovorin treatment.

Frye’s team has also identified new potential biomarkers, such as the soluble folate receptor protein, that could predict which children require higher doses.

Frye noted that there are many nuances to treating CFD with leucovorin, including the addition of adjunctive treatments to optimize mitochondrial function.

The side effects associated with leucovorin are mild. Some children experience hyperactivity during the first few weeks of treatment, but that typically subsides within a month or two. A similar pattern is seen with other B vitamins.

Mason’s ‘Little Bottle of Hope’

Mason Connor’s first words came just three days after he started taking leucovorin at age 3, his parents say.

Doctors can currently prescribe the drug only for autism off-label, which means repurposing a drug approved for one condition to treat another.

“We’ve done the science, and the next step is that we want to get more funding so we can actually get it FDA-approved,” Frye said.

He welcomed the but cautioned that it “may have been a little premature,” given the gaps in knowledge and the need for physician education on how to prescribe leucovorin correctly in autism.

There’s one big problem. “Leucovorin’s an old drug, and you can get it for a very low price. So nobody is going to make a lot of money on it. So there’s no reason for them to invest,” Frye said.

Compounding the challenge: supply and quality vary. “Leucovorin is a generic, and different manufacturers use different additives,” Frye explained. “Some formulations children with autism don’t tolerate well.”

Frye used to recommend that patients use the generic form of leucovorin manufactured by West-Ward Pharmaceuticals, a U.S. subsidiary of Hikma, but, he said, “it ran out early this year. Right now, the only reliable source is through a high-quality compounding pharmacy that knows how to make it for kids with autism.” Frye is in the process of establishing a for-profit company to manufacture the right form of leucovorin for kids with autism.

An estimated 20%-30% of all prescriptions in the U.S. are off-label, according to the nonprofit . This is often done as there are more than 14,000 known human diseases with no FDA-approved drugs to treat them. Drugs like leucovorin are frequently used off-label because doctors believe that the benefits outweigh the risks. However, there is often limited awareness about these treatments, so they may go unused.

, Every Cure’s co-founder and president, said he’s “literally alive today from a repurposed drug” after he was diagnosed with a rare cancer-like disease that almost killed him. His research into his disease led to a drug meant for another condition.

“It’s heartbreaking to think about drugs being on the pharmacy shelf while someone suffers from a disease,” Fajgenbaum said.

Every Cure uses AI to scour available medical data on diseases and treatments to uncover potential matches. the work of Frye, Ramaekers, Quadros, and others on leucovorin in the treatment of autism.

“I think our system is just flawed and there’s this major gap where drug companies are great at developing new drugs for new diseases, and we as a system are really lousy at looking for new diseases for old drugs. That’s why we started Every Cure — to unlock these hidden cures,” Fajgenbaum said.

Mason is now 5, and the plan is for him to start mainstream kindergarten this fall — helped toward a new path by an old medicine.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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Public Health Further Politicized Under the Threat of More Firings /podcast/what-the-health-415-public-health-politicized-federal-firings-threat-september-25-2025/ Thu, 25 Sep 2025 18:15:00 +0000 The Host
Julie Rovner photo
Julie Rovner Ñî¹óåú´«Ã½Ò•îl Health News Read Julie's stories. Julie Rovner is chief Washington correspondent and host of Ñî¹óåú´«Ã½Ò•îl Health News’ weekly health policy news podcast, "What the Health?" A noted expert on health policy issues, Julie is the author of the critically praised reference book "Health Care Politics and Policy A to Z," now in its third edition.

In a highly unusual White House news conference this week, President Donald Trump — without evidence — boldly blamed the painkiller Tylenol and a string of childhood vaccines for causing a recent rise in autism. That came just days after the newly reconstituted Advisory Committee on Immunization Practices, now populated with vaccine skeptics and opponents, voted to change long-standing recommendations.

Podcast host Julie Rovner interviews Demetre Daskalakis, who until last month was the head of the Centers for Disease Control and Prevention’s National Center for Immunization and Respiratory Diseases, about the reaction to these unprecedented actions.

Meanwhile, as the government approaches a likely shutdown, with Congress at a standoff over funding for the new fiscal year that starts Oct. 1, the Trump administration is ordering federal agencies not to just furlough workers but to fire them if their jobs do not align with the president’s priorities.

This week’s panelists are Julie Rovner of Ñî¹óåú´«Ã½Ò•îl Health News, Anna Edney of Bloomberg News, and Sandhya Raman of CQ Roll Call.

Panelists

Anna Edney photo
Anna Edney Bloomberg News
Sandhya Raman photo
Sandhya Raman CQ Roll Call

Among the takeaways from this week’s episode:

  • The federal Office of Management and Budget on Wednesday night sent a memo to government agencies asking for contingency plans in the event of a government shutdown starting Oct. 1. Such a memo isn’t unusual when it comes to pre-shutdown planning. This time around, it took an unprecedented turn in informing agency personnel that they should prepare for mass firings of employees whose programs lack alternative funding sources or who are working on a program whose mission doesn’t directly align with Trump’s priorities. Though federal RIFs, or reductions in force, and government shutdowns have each happened before, the combined RIF/shutdown threat is a first.
  • It seems we are headed for a shutdown. Before adjourning until after the fiscal year ends Sept. 30, the House approved a stopgap funding measure. But, because House members do not plan to return to Washington until Oct. 6, that leaves the Senate in a jam. If senators change anything in the bill, it would require another House vote, which, because of the House schedule, might not happen before the month ends.
  • There’s also interparty strife. Republicans say they want a clean bill to provide short-term funding, while Democrats have other ideas. Their prevailing attitude is that they went along with this approach in March and got burned. This week, Trump also canceled a meeting with Democratic leaders. The bottom line is that both sides are jockeying for a position that would allow them to cast shutdown blame across the aisle. Some call it a game of three-dimensional chess, while others call it a game of chicken. Either way, there will be consequences.
  • Confusion and chaos have emerged as buzzwords to describe two recent events: last week’s meeting of the CDC’s Advisory Committee on Immunization Practices and this week’s White House press conference about autism. Both were marked by mixed messages. At the White House event, for instance, Trump warned pregnant women not to take Tylenol. But the FDA information that shortly followed downplayed the Tylenol risk.
  • The Trump administration’s new $100,000 fee for H-1B visas could have an impact on health care. Such visas are often used by graduating medical students and other health professionals who come to the U.S. for training, then stay to practice. That $100,000 fee is steep and generated an almost immediate backlash from hospitals and health systems, especially those in rural areas — a reaction that caught administration officials off guard. Administration officials have suggested that health professionals would qualify for an exemption from this fee. What is not yet clear is what hoops the sponsoring hospitals would have to jump through to qualify for it.
  • Trump has given 17 drug companies a Sept. 29 deadline by which they will have to commit to adopting his “most favored nation” pricing policy. It’s intended to increase the cost drugmakers charge in other countries while lowering prices in the U.S. Talks between the administration and the drugmakers are ongoing. So far, indications are that Trump might end up with half a loaf. Some large drugmakers have announced they will raise the prices of specific medications in other countries but have not agreed to reduce prices in the U.S.

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

Julie Rovner: NBC News’ “,” by Liz Szabo.

Anna Edney: The Washington Post’s “,” by Kevin B. Blackistone.

Sandhya Raman: ProPublica’s “,” by Eli Cahan.

Also mentioned in this week’s podcast:

  • Axios’ “,” by Peter Sullivan.
  • Bloomberg Law’s “,” by Rachel Cohrs Zhang, John Tozzi, and Jessica Nix.
Click to open the transcript Transcript: Public Health Further Politicized Under the Threat of More Firings

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.] 

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for Ñî¹óåú´«Ã½Ò•îl Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Sept. 25, at 10 a.m. As always, news happens fast, and things might’ve changed by the time you hear this, so here we go. 

Today, we are joined via videoconference by Sandhya Raman of CQ Roll Call. 

Sandhya Raman: Good morning. 

Rovner: And Anna Edney of Bloomberg News. 

Anna Edney: Hey, everybody. 

Rovner: So we’re going to do something a little different today. I got a chance to speak on Wednesday with Dr. Demetre Daskalakis, the former head of the Centers for Disease Control and Prevention’s National Center for Immunization and Respiratory Diseases. I asked him to respond to the White House announcement on autism and last week’s rather muddled meeting of the Advisory Committee on Immunization Practices. So we’ll play that interview first, and then we’ll come back for our panel discussion. Here’s the interview. 

I am so pleased to welcome Dr. Demetre Daskalakis to the podcast. Until last month, Dr. Daskalakis was the head of the Centers for Disease Control and Prevention’s National Center for Immunization and Respiratory Diseases in Atlanta. He quit, along with three other senior career CDC officials, after Health and Human Services Secretary Robert F. Kennedy Jr. fired their boss, Susan Monarez, for refusing to approve in advance changes to the childhood vaccine schedule. Dr. Daskalakis, thank you so much for joining us. 

Demetre Daskalakis: Thank you so much for having me. 

Rovner: So, for those who haven’t been plugged into the public health doings over the past month, remind us what exactly your job was at CDC and why you felt you needed to resign following the dismissal of Dr. Monarez. 

Daskalakis: So CDC is made up of centers, and so I ran one of the centers, called the National Center for Immunization and Respiratory Diseases. CDC’s not known for its pithy titles. So what that is is the center that is responsible for a lot of what you think about when you think about vaccines and vaccine-preventable diseases. That includes the resources that go out to local jurisdictions. 

Rovner: And when Dr. Monarez was fired, what did that signal to you? 

Daskalakis: Yeah. I think the last eight months had been hard. I think that we had other things that happened before Dr. Monarez’s resignation. I think we saw the Advisory Committee on Immunization Practices be zombified into something that was not science, we saw recommendations around covid vaccine come out on Twitter rather than through any scientific process. So those were the things that were on the way. But as ACIP was made zombified — and what I mean by that was CDC has nothing to do with it, these folks who have been installed, who are frankly anti-vaxxers for the most part, they’re the ones that are driving the agenda, the membership, all of it — so it wasn’t really doing anything of scientific consequence anymore. 

But when Dr. Monarez was there, we had a scientific leader whose job it was to really be a diplomat to Secretary Kennedy and Health and Human Services, but also to really make sure that the science is what leads the policy. And so, when I saw that organization, the Advisory Committee on Immunization Practices, become some strange ideology machine, and then also saw that I wouldn’t have a scientific leader at CDC who would be able to defend the science, the game was over for me, because I couldn’t see any way that we would be leading with science. Instead, I could only see ideology. I read RFK’s books, and I know what’s coming, which is the dismantling of vaccines for the United States. 

Rovner: So can you talk a little bit about how the career scientists and doctors at the CDC normally interact with the political appointees at the agency and the political folks at the top of HHS, and how that was so different in this administration? 

Daskalakis: Yeah. I worked with — now that would be — four CDC directors and two secretaries of health. And so, the way that we normally interacted as career scientists was that we would produce materials; if there were questions, we would create memos and other materials to be able to present to our politicals around those issues. We would be responsive to any issues that they wanted to talk about. So for instance, if somebody said, “I want to talk about the birth dose of hepatitis B vaccine,” we would create briefing materials and opportunities for the politicals, both at HHS and CDC, to be able to have time with career scientists to really learn about the story. And that’s not what’s happened in this newest regime. 

Now, let me be clear, Dr. Monarez did ask for briefings, and she did get them, so that is not the person I’m talking about. Above that, the secretary had never been briefed by anyone from the National Center of Immunization and Respiratory Diseases while I was there, so he never heard about measles, never heard about bird flu, didn’t hear about covid, though he made decisions about covid, didn’t hear about any of the things that we normally brief about. Didn’t hear anything about seasonal flu, RSV, and covid. We had been briefing folks on a monthly basis, because this was the epidemic that we have every year. So to say that there’s a glitch in the matrix is an understatement. This is an extremely atypical environment, where the head of people’s health for America doesn’t talk to people who know the science. 

Rovner: So I want to ask you about the ACIP meeting, but since then, we’ve had the White House announcement on the causes of autism and a potential new treatment for it. Can you give us your take on that entire event, both the press conference announcing it and the documentation, such as it was, that was provided afterwards? I have to say, I watched all of the covid press conferences with President [Donald] Trump in 2020, and this made even my eyes cross a little bit. 

Daskalakis: So let’s rehash what happened with the acetaminophen and autism issue. So they took one study and elevated that study and did this Orwellian doublespeak around it, where they said that it showed that there was a link, quote, “link,” between acetaminophen and autism. The study didn’t show that; the study showed that there was an association, and so an association does not mean cause. And so, my example that I use is when you are meeting people who have lung cancer and you ask them if they have matches in their pocket, they very often do. It’s not the matches that cause the lung cancer, it’s the tobacco; it’s the smoking. 

So very similarly, there’s an association with acetaminophen, that’s the matchbook. Autism is a spectrum and it’s not a disorder or a disability for some people, it’s just part of their normal neurocognitive story, but it’s like the equivalent in my analogy of lung cancer. And so, there’s something in between there that we don’t really see, and that could be genetics and other environmental exposures. So they put all of their eggs in one basket that should make nobody feel comfortable that they have the answer for autism because they found an association that people kind of already knew about and made an announcement, mainly because the secretary promised a September announcement. And so, science can’t be rushed, this was a rush job, and I don’t like my policy fast and loose, and that’s what you’re seeing, fast-and-loose policy. 

They also talked about leucovorin, which is a drug that I think many people use or know about, usually used in cancer chemotherapies that involve some kind of antifolate, so it is a rescue. So if people are getting a medicine that makes their folate low, the folinic acid is kind of like super folate that really replaces the deficiency. And so, they made big statements about this being a potential treatment for autism, but then subsequently in the writing that they put out, they were very focused on a very specific circumstance of people who have some sort of cerebral folate deficiency. 

So that’s the big picture. They announced a bunch of stuff, and it didn’t go through any process, we don’t know the quality of the data, the entirety of the data was not reviewed in any systematic way, and then announcements were made without any process of actually demonstrating what work was done to get there. We’ve all been in math class — the answer to an equation isn’t just 25, you have to show the work to get there, and so it’s like they just said, “The answer is 25.” 

Rovner: And in this case, this could cause all kinds of actual consequences for people, particularly for pregnant women who have pain or fever. 

Daskalakis: Which is associated with poor outcome for the pregnant woman, as well as for the fetus or the child after they’re born. So there’s that reality, that it’s not inconsequential, and then you have someone saying, “Avoid it, don’t do it, at all costs, don’t do it,” and then what the FDA puts out that says, “Should use judiciously.” 

So I’m going to answer the second part of your question, what did I think of the press conference? I’m going to be honest, I don’t blame the president for anything that he said. I blame RFK Jr. and the other people on that stage. Their job is to make sure that their principal knows what they’re talking about, and so they have failed their job because what happened was we had a principal who was talking about things that were, I think, beyond his scope. And then also, we thought we were just talking acetaminophen, and then all of a sudden, in a non sequitur, we heard about the vaccine schedule for kids with some very strange places that we visited, including the notion that hepatitis B is a sexually transmitted infection, and rather than the birth dose that prevents vertical transmission, mother to child, as well as household transmission, we should wait until age 12, which will manifest itself as liver cancer, liver transplant, and cirrhosis for a lot of children, especially those who maybe are at higher risk because of their social circumstance. 

So that’s what I thought. I was, like, poor guy, he’s being briefed by people who don’t know anything, and so maybe they should take care of him. 

Rovner: All right. Well, I want to also ask you about your reaction to the Advisory Committee on Immunization Practices’ meeting last week, where the committee voted to change recommendations for both the measles-mumps-rubella and chickenpox vaccines and the covid vaccine. At the end, it felt like everyone was confused, including the members of the committee. What stood out to you about that meeting? 

Daskalakis: I felt like an oracle, because in my resignation letter, I told you this was going to happen, and it’s exactly what I thought. And so, what happened was they did no process and just did stuff. And so, let me just give you what normal is, because that’s really important, and then I’ll walk you through each one and tell you why they were abnormal. 

So generally speaking, something happens, and there’s a question related to vaccine policy, there’s a new vaccine, there’s new data around safety, something happens. And that’s elevated either by ACIP members, CDC, or the working groups that live within the ACIP that do all the work on the side before the meeting. So that question comes to the work group, and the CDC folks work really hard and poll all the data in the world about the question. They in effect work to do what is, for lack of a better word, a meta-analysis, a study of studies, and they go through a process called GRADE, where they look at all the data and say, “This is good data, this is OK data, there’s bias,” really to contextualize all of the data. They then put that onto a clear table that tells you what’s happening. Now, they did that for a couple of things. 

The next thing is that there are long discussions. They’re long because they’re complicated, and they go through something that’s called an Evidence to Recommendations Framework. Now, that’s jargony, but what it means is that there’s this process where they ask, “Is this an important public health question? What are the implications for equity? Do the risks and the benefits … what is the equation there? Is there more harm or more good? Is this something that is going to improve the health of people? And is this cost-effective?” There’s a lot of domains, but they go through it really methodically because they want to get all of the domains that are needed for decisions. Once they do that, they produce a recommendation. That is taken to ACIP and it’s discussed. And then they vote. 

So what happened was that they didn’t do it, because RFK Jr., I know this from the inside, said, “I want on the agenda hepatitis B birth dose and MMRV.” What you saw there was politicization of the committee, ideology dominating, conspiracy theories being elevated to the level of data, and then decisions being made based on that. So if the data’s no good, if the foundation of the house is rotten, that house shouldn’t be standing, so that’s what we saw. 

And I want to go back to that hepatitis B thing. So they may go and do something that’s more process. But one of the reasons that I left was that CDC is not allowed to dictate who is on the work group anymore. So if they stack the work group with people that are anti-vax people, who are naysayers, who are not basing conversations on data, but on the anecdote or unvetted studies, it won’t matter, because that process will also be rotten if there’s not a diversity of opinion and scientific expertise on the work group. So that’s what happened at ACIP. 

Rovner: So following some pretty unusual public health actions just in the week since you’ve resigned, what’s your biggest concern about public health going forward? 

Daskalakis: So I think that there’s a couple of things that happened that I didn’t talk about yet that are very concerning. I’ll tell you that the book that I picked up to start reading when I finished my time at CDC was [George] Orwell’s “1984,” and the reason that I picked it up was because really soon after I left, I have nothing to do with stopping it or starting it, but just saying temporally speaking, CDC changed their webpage, that was the “About CDC” webpage, into, in effect, what is a manifesto as opposed to a description of an agency that is supposed to be balanced and scientific. So it really, in effect, speaks about compliance to ideology as the principal motivator for what CDC is and will do. There were other things wrong with that document, but we don’t have the time to go into that one. 

And so, I feel like — first chapter of “1984” that talks about ministries that are using doublespeak to be able to say what they do, I think we are now living it. And so that’s my fear, that everything that’s going to be coming out of CDC is going to be colored by ideology, or that data is going to be released from CDC without scientists able to explain it so that it can be used for other means or that will allow folks who are more ideologically motivated to be able to make conclusions based on inadequate analyses. So that’s what I’m worried about. 

Rovner: So how do we proceed from here, both public health professionals and Americans who are just looking for health guidance? 

Daskalakis: Yeah. I think we’re at a dark time, but I also think that there’s going to be light in the darkness, it just may not be today. So the first thing is trauma-informed care, your feelings are valid: This is not normal, something not good is going on, and it’s hard to figure out who to trust. And so, my recommendation to people is, and I know that this is a hard one because not everybody has access to care, is if you do have access to care, you really need to lean into your doctors — doctors, nurses, nurse practitioners, physician assistants, pharmacists — taken widely and broadly, health care professionals. So even if you don’t have a primary care doctor, you have a pharmacist, and so go to that pharmacist and talk to them. It’s not as good as having one word for the land, as had been standard for CDC, but in this environment, I think you need to go with people that you trust. 

I’ll also say one of the things that should be a red flag for everybody out there is — I’m a doctor, I take care of patients — and I do actually believe that the relationship between a clinician, a health care provider, whoever they are, and their patient is very sacred. And so, whenever you hear anyone in the world trying to destabilize that relationship, saying that, “Doctors don’t know what they’re talking about, don’t listen to the pediatricians,” that is not someone you should be taking medical advice from, because they’re actually at their core trying to get you to not listen to the people who are your best allies and advocates in the health space. 

Rovner: Dr. Demetre Daskalakis, thank you so much for joining us. 

Daskalakis: My pleasure. 

Rovner: OK. We are back with our panel, and I want to ask both of you about your reactions to the ACIP meeting and the autism announcement. But let’s turn first to the breaking news about the potential government shutdown that’s less than a week away. Last night, the Office of Management and Budget, which traditionally sets the rules for who stays on the job in a shutdown and who doesn’t, issued a memo of the sort I’ve never seen before. Rather than directing agencies to prioritize which activities are needed to preserve, quote, “life and property,” and thus who’s required to work without pay for the duration and who gets furloughed until funding is restored, this memo basically says if the activity doesn’t have another source of funding and it’s not within the administration’s priorities, agencies should prepare to fire not furlough workers. This is obviously a big ramping up of this shutdown. I know this just happened, but what kind of reaction are you guys seeing? 

Raman: This to me just seems very, very highly unprecedented. We’ve had shutdowns, we’ve had near shutdowns, many of them in the past, and it has not escalated to this at any time that I’ve seen. 

Rovner: Forty years, I’ve been doing this 40 years, I have never seen anything quite like this. We’ve had rifts and we have shutdowns, but we’ve never had them combined. 

Raman: Yeah. And so, I think it’ll be really interesting how the next few days play out. The Senate is in for a couple of days before we would hit the shutdown, if there’s anything they can come together on. It is really difficult when you escalate to this level when they’ve been trying to negotiate so far. It’s hard. The House isn’t supposed to come back until Oct. 6. 

Rovner: Oops. 

Raman: So if the Senate changes anything or wants to change anything compared to what the House had passed, they’re stuck. Either the House has to come back in or they shut down until they come to a compromise on something. So I think from everyone that I’ve been talking with over the past few weeks, it seems like we’re really headed to a shutdown. It’s possible they get a few Democrats to fold and go with what’s there, but I think this last move, and then also President Trump saying that he was going to meet with Democrats earlier this week, and then saying, “No, I don’t want to,” they’ve been saying there’s not good-faith efforts to negotiate, so they’re in a pickle at this point. 

Rovner: Let’s get real: This is about not whether we’re going to have a shutdown, but who gets blamed for the shutdown. Traditionally, it’s been the Democrats, and the Republicans keep saying this, who say, “Look, we’re just having a clean extension of funding, we’re just going to basically roll out the clock, kick the can down the road, so we can continue to negotiate over funding for next year. Why won’t Democrats go along with that?” And Democrats are responding, “Well, we went along with it in March, and look at what’s happened in the interim, and our base didn’t like that, so we think we should fight this time.” And then, you had the president agreeing to meet with Democratic leaders, but then the Republican leaders in Congress telling the president, “No, don’t meet with them.” It’s all strategy at this point. You’re nodding, Anna. 

Edney: Yeah, yeah. I was just thinking, I think a lot of times, talking about this administration, people are saying, “There’s no plan.” But I do see the 3D game of chess at this point, and that letter very clearly mentioned if the Democrats shut down the government, that was lobbying that into the court of the Democrats saying, “This is your fault if it happens.” And I do think that the Democrats were burned last time in the sense that it seemed like they might allow a shutdown and then backtracked pretty quickly and the base just didn’t like it, and I think we’re seeing a lot from the, I don’t know what exactly to call them, thought leaders on the more liberal side saying, “Just do it, let it rip.” If it shuts down, they’re going to try to find a way to blame it on the Republicans. 

So I think it’s a game of chicken at this point, but there are real consequences. These are people’s jobs who aren’t necessarily going to all want to come back to the government if things suddenly, it works out. These are activities that we rely on for everyday life that will be hurt. 

Rovner: Yeah. We’ve already seen the administration trying to hire back some of the people that they laid off earlier this year because it turns out they were needed to do important jobs. I saw House Democratic Whip Katherine Clark this morning on CNN describing this letter as, “The beatings will continue until morale improves.” This really is playing with the lives of government workers who basically have come to these jobs because either they believe in them or because they usually have been stable jobs. They might, may be able to make more in the private sector, but government jobs tended to be secure, and boy, that’s not what’s happening right now. They don’t seem to be guilty parties in all of this, and yet they’re the ones who are being used as pawns. 

Raman: I think one thing that I have been thinking about in reading that OMB memo is that it says that the rifts are going to affect people that aren’t also really aligned with carrying out President Trump’s priorities and mission. What does that entail? Within HHS, what falls in that bucket? We have some ideas based on previous executive orders and things that he’s made some remarks on, but there’s plenty that we don’t know. 

Rovner: They could theoretically shut down the entire NIH [National Institutes of Health] or the entire CDC, which I think Secretary Kennedy might not mind. 

Raman: How that would go about, I don’t know. I think that we’ll all be really looking to see what kind of contingency documents they put out. They usually put those out before, when we’re in this waiting period about a shutdown, and it would definitely be very different than the ones that we’ve had in the past for a department down or agencies. What that’ll say, I just don’t know. 

Rovner: Yeah, that’s right. To be clear, the OMB memo is to the agencies saying, “Send us your contingency plans.” Normally, that would’ve happened by now, it usually comes out a couple of weeks ahead of a potential shutdown and everything. We’re playing brinksmanship here. Anna, you wanted to say something before we move on? 

Edney: Oh, I don’t remember what that was. But just on the last point, I think the agencies, they usually have that contingency plan at the ready, but they can’t — I don’t think that this would’ve been the one that they had drawn up. I think they have to tear that up and start over again. And like you mentioned, the CDC, the NIH, you can, through this mandate, possibly see how you could just wipe out an entire agency. 

I think on the FDA side, I just wanted to add, there are some user fees on that side that may keep the drug review side afloat, anything where they’re looking at approvals and things like that is funded, at least for a while. If this devolves for months and months, that’s not the case. But there are a lot of other parts where they’re doing inspections and keeping the drug supply and the food supply safe that could be impacted. 

Rovner: Yeah. And we should point out that this does not affect things that have mandatory funding, like Medicare and Medicaid and Social Security, and, as you say, user fee funding, like the review activities at FDA. 

Well, while we’re on the subject of things that are unprecedented, let’s turn back to that ACIP meeting and the White House autism announcement. One of the things that ties them together is the fact that both leave the public with more confusion than clarity over what to do about vaccines and Tylenol and, once again, leaves Americans wondering who or what they can trust. What’s the biggest takeaway from each of you? Anna, why don’t you go first, about both the autism announcement and the ACIP meeting? 

Edney: Yeah, I think there just is a ton of confusion. I can’t count how many times people are like, “Remind me again, who can get a covid shot and who can’t? And what are we doing with RSV now?” There was a lot of talk before the ACIP meeting about hepatitis B and that even the ACIP members were confused. 

So I think that one thing that I think this makes crystal clear is that when I know that this administration and many of the people at the top in health care don’t appreciate the medical establishment and they don’t feel that it is operated in a way that is open to modernization. But you can’t just break it all and then start over, these are guidelines and things that people rely on, and it has to be, I think, a much more thoughtful process than what we’re seeing right now. You have a lot of people who are pregnant or have young children who are freaking out, because they’re like, well, I took Tylenol for three days because I had a fever, and I think that it creates more fear-mongering, because the guidance really isn’t that different, what the FDA actually said isn’t that different from what was already out there, you’re just really scaring people now. 

Raman: So I think I would say something along similar lines, the mixed messaging and the confusion of that both events is pretty stark. So I think the thing that struck me with ACIP is just the second day, we have a re-vote on something that you voted on the first day, and if you watch just one, you would assume that what happened there is done, and then going back, it’s just very unusual and makes it even more confusing. 

And I think the second thing that struck me was that we had this whole shake-up of ACIP in general to be like, we don’t want conflicts of interest, we want people that are able to vote on everything. And then, here, when we have the votes, we have someone on ACIP not be able to vote on something because they’re disclosing a conflict of interest. So it struck me that we went through this whole process that was to eliminate that, and then here we are back to that, which people have been saying for a long time, it’s difficult to find anyone in this space that doesn’t have other things that are connected to vaccines. 

For the autism announcement, the thing that was really interesting to me was that this was done on the White House level rather than just HHS is having an event, it’s with some agency folks there, and then them putting out information, whatever they’re talking about. This was predominantly Trump speaking in a much more aggressive, this is what is what tone, compared to the agency folks who mostly were downplaying a little bit of what he’s saying. He repeatedly said, over and over again, “Don’t take Tylenol, don’t take Tylenol, no Tylenol for pregnant women.” And then, even when you look at the FDA release that came out a little bit after really downplayed it, it said that there was an association, but there wasn’t a causal relationship that they had found between acetaminophen and autism in children. It goes back to that mixed messaging, where even if the majority of scientific professionals are saying that this goes against what a lot of the research that they’ve been doing, you’re going to be confused. 

Rovner: Yes. Another thing that seems to tie together both the ACIP meeting and the autism announcement is to basically put all medical responsibility on individuals, which many consider to be blaming the victim and increasing stigma by basically saying, “Whatever you decide, whatever happens is your fault.” I feel like we’ve careened from maybe too much reliance on experts to too little. That was certainly the president’s message at that press conference, it’s like, “Well, this is just common sense.” It’s like, I thought we were supposed to be relying on gold-standard science. 

Edney: That was a very stark point, where it was like, what do you mean you feel this? It’s like, I think you’re supposed to know that through research and scientific data. 

But I wanted to go back, you mentioned blaming the patient, I think specifically on the autism side, this is something we see with expecting mothers a lot, because I interviewed professor Emily Oster about the autism announcement, and she dives very deep into data on a lot of things parents are concerned about, and she was telling me about “refrigerator moms” in the 1950s, and I didn’t realize this, but apparently women were blamed for different mental illnesses if they were too cold, not freezing-cold, but emotionally not available for their children enough, and so they must be causing their schizophrenia and there was a big link to that. And that continues, they’re telling the women, “If you have a fever or enough pain that you would consider popping a Tylenol, then that’s on you, just either deal with it or be responsible for the fate of your child.” 

I think that’s what the medical establishment has been trying to avoid, is giving women options, and there are a lot of reasons you need to take care of that fever or you need to take care of that pain, and some of them have to do with the health of the child, the baby that they’re carrying, so … 

Rovner: Right, fever is also a potential cause of problems. 

Edney: Exactly. 

Rovner: All right. Well, in a health-related story that doesn’t seem like a health-related story, the Trump administration late last week announced a new $100,000 application fee for H-1B visas. Now, those are usually associated with tech workers, but it turns out that an awful lot of medical professionals, particularly doctors from other countries, use them to come here to fill residency positions that American medical school graduates don’t fill — often low-paying primary care slots in rural areas. And, according to , it seems that medical personnel might be exempt from this new fee, but it’s not clear how many hoops hospitals might have to jump through to get those exemptions. At best, it doesn’t feel like this was very thoroughly thought through, particularly for an administration that says that rural health is a priority. 

Edney: Right, yes. I think they may have been a little surprised by the amount of pushback from the hospital and doctor associations, saying, “We really rely on these to get doctors to rural areas.” And they almost immediately tried to massage that and say, “Oh, well, they could be included in exemptions.” But that’s all we know, “can be included” is not extremely reassuring. It’s not saying, “We’re giving you a blanket waiver for doctors,” or anything like that, and nobody knows, like you said, the hoops they might have to jump through. I would say it’s a start, and maybe they’re thinking about it, more aware of it, at this point. 

Rovner: Sandhya, is there any pushback from Congress? Can the president even do this? 

Raman: I think the pushback I’ve seen has been broader, not just on how this is going to affect hospitals that clearly cannot afford this in the same way that maybe some of the Big Tech companies may be able to. But I will be really interested when they come back just how lawmakers might look at this, because hospitals are the biggest employer in so many congressional districts, that if they’re pushing back, I could see people that normally don’t push back on this kind of thing saying, “If the biggest employer in my district is going to tank because of this,” it rises up as an issue for them. 

Rovner: On the other hand, we haven’t seen a lot of pushback from Congress for things that we expected to see pushback on, so I guess we’ll have to watch that space. 

Raman: Yeah. 

Rovner: Well, finally this week, there’s good news and bad news on drug prices, which President Trump has vowed to reduce by, and I looked this up to get the quote correct, 1,400% to 1,500%. He said it many other ways, by the way. The idea of his, quote, “most-favored-nation” executive order that he issued last spring is to get drugmakers to lower U.S. prices to those charged in other countries that have price controls that we don’t have. Well, Trump is getting half of what he wanted, . Several large drugmakers say they’re going to equalize what they charge here and overseas, but not by lowering prices for Americans, rather by raising them for Europeans and others. On the other hand, there’s still a few more days until the Sept. 29 deadline for them to do this. Anna, are you hearing anything new on this? 

Edney: I haven’t heard anything new. I think we just saw, like you mentioned, what Bristol Myers Squibb did, which was a newer schizophrenia drug they raised, they said they were going to introduce that in the U.K. [United Kingdom] at the same price in the U.S., extremely convenient for the pharmaceutical companies to be able to have this reason to raise prices elsewhere. But then, of course, they can find reasons not to bring them down so far in the U.S., and we’ve seen — the only other company I can think of was Eli Lilly did this earlier this summer, saying they would do the same for their drug Mounjaro, and there was maybe some hoarding that started because people in Europe don’t want to pay the higher price. 

Rovner: Mounjaro being a diabetes drug that is also the weight loss drug. 

Edney: Right, right, yeah, so the weight loss drugs have seen a lot of ups and downs. But you’re right, there’s only a few days left, and it’s interesting that it hasn’t leaked … any kind of plan that the pharmaceutical companies are talking about or anything like that. Sometimes, I feel like because this administration is operating more by telling people through letters and demanding it at the podium rather than doing actual regulations — remember, the most-favored-nation policy did not work out well after challenged in court the first administration. So I think they’re often happy to get half of what they asked for in a way. But this could be tough, because it lets Trump say, “We’re no longer carrying all the water,” but it doesn’t let him say, “We decreased prices for the American people.” So we’ll have to see … 

Rovner: By 1,400% to 1,500%. 

Edney: Right, right, get those economists to figure that out. But we’ll just have to see what’s going on even … so much. The shutdown may take all his fire. 

Rovner: Yeah. This is one of those issues that is bipartisan, that it is popular on Capitol Hill, and that lawmakers keep saying they’re going to do something about, but so far, we’re not seeing it, are we? 

Raman: I think that there’s so much that they have on their plate right now and just so much that they have been at odds with each other right now, it’s something that would’ve gotten more attention in normal times, has just gotten really delayed at this point. 

Rovner: These are definitely not normal times. 

Raman: Yep. 

Rovner: All right. Well, that is the news for this week. Now, it’s time for our extra-credit segment. That’s where we each recognize a story we read this week we think you should read too. Don’t worry, if you miss it; we will put the links in our show notes on your phone or other mobile device. Anna, why don’t you go first this week? 

Edney: Sure. So mine is in The Washington Post, and it’s: “.” It was a really interesting look at basically how women athletes, specifically in basketball, and they discuss others lower down, are choosing college based on abortion laws — the states where they have less restrictive abortion laws, or more abortion rights, I guess I should say — then they’re tending to go there. And then, you have the schools more in the South, where they’re more restrictive, where they’re choosing not to go there for the four years of their college life. And it was something that I think was just a really interesting look at a topic that has been on everyone’s mind, but with so much going on, not exactly focusing on it. And it talks about other trends in college admissions and things too. So something to think about. 

Rovner: Yeah. I know we’ve talked a lot about health workers avoiding states with abortion restrictions. This is the first time I’ve seen this link to younger women and sports and college, and we’ll see whether some of the states react to that. Sandhya? 

Raman: My extra credit is called “],” and it’s in ProPublica by Eli Cahan. And I think what drew me to this is EMTALA [the Emergency Medical Treatment and Labor Act] has been one of those things where we have been thinking about it a lot in terms of abortion, when we’ve seen it in the news in the last few years, it’s been very abortion-focused. But this story looks at a psychiatric hospital in Colorado that got taken to task for not providing stabilizing care to patients at risk for suicide, and CMS [the Centers for Medicare & Medicaid Services] didn’t penalize them in reducing funding or imposing any penalties. It’s part of a broader thing, where over 90 psychiatric hospitals have violated EMTALA in the past 15 years. I don’t want to give away the whole thing of the story, but it goes more into this. 

Rovner: Yeah, it’s a really good story. All right. My extra credit this week is from NBC News by my friend and former colleague Liz Szabo, and it’s called “” It’s a really good roundup about what’s likely to be the HHS secretary’s next target: the program that compensates the very small number of Americans who are injured or killed by vaccine side effects. There are risks to all vaccines, although they are very much outweighed by the benefits, and this program was created by Congress during the Reagan administration to compensate those who have suffered from those rare adverse reactions. 

The program was created to keep vaccine manufacturing alive in the United States because product liability suits were threatening to shut it down entirely, while the program also makes it easier for those who are injured to receive compensation. The program is far from perfect and it could use some revisions, which Congress has tried and failed to do over the last couple of decades. But it seems clear that that’s not what Secretary Kennedy has in mind. It’s a great preview of what the next likely battle is going to be in the vaccine wars. 

OK, that is this week’s show. Thanks this week to our editor, Stephanie Stapleton, and our producer-engineer, Francis Ying. If you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us too. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can find me on X, , or on Bluesky, . Where are you folks these days? Sandhya? 

Raman: At and on : @SandhyaWrites. 

Rovner: Anna? 

Edney: Same places, or . 

Rovner: We will be back in your feed next week. Until then, be healthy. 

Credits

Francis Ying Audio producer
Stephanie Stapleton Editor

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Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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