Ethan has autism and attention-deficit/hyperactivity disorder. He was diagnosed with autism in kindergarten after displaying behavior that concerned his relatives: He paced, flapped his arms, and became consumed with highly specific interests, such as Martin Luther King Jr. and dachshunds.

In a meeting with school administrators and the district to develop his individualized education program, a legal agreement that outlines the support Ethan requires, the team agreed he required a trained paraprofessional to help him regulate his emotions and remain in class, according to complaints Smith filed against the school. However, the complaints alleged, administrators were unwilling to provide the dedicated aide. Instead of implementing the supports her son needed, his school repeatedly removed him from instruction, suspended him, and even called police on him when he was in third grade, Smith wrote.

Smith, a seventh grade science teacher, said she first filed complaints with the school district and the state with these allegations. But when problems persisted, she turned to the U.S. Department of Education’s Office for Civil Rights, the federal agency tasked with resolving complaints like hers. Smith’s federal complaint included the same account and alleged that the school discriminated against her son because of his disability and race, including deploying pressure tactics to push her Black son out of the public school. In May, the office said it would investigate several of her allegations.

For families who believe their child’s rights were violated based on race, disability, or gender in school, the federal agency often has been one of the main places to turn. But the White House cut its offices and weakened its ability to follow up with cases, as well as slashed funding to that people of color face in for disabilities.

About 1 in 31 U.S. kids by age 8 had been as of 2022. Although previous research on disparities in childhood autism diagnoses has had mixed results, a recent study from the State University of New York at Albany’s Institute for Social and Health Equity found that race, gender, and socioeconomic . Among fourth graders from 2003 to 2022, students of color, girls, low-income students, and multilingual learners were less likely than peers to be identified with autism in school, even as diagnoses rose among children from historically marginalized groups, the study found. A large forthcoming study by the same researchers found the biggest gaps among overlapping identities. Black and Hispanic girls were especially unlikely to be identified.

All this has happened as President Donald Trump’s second administration has put autism in the spotlight. In early August, Trump to whittle down routine immunizations for kids while falsely tying vaccines to autism. He has presented it as a and one of “the most alarming public health developments in history.” Health and Human Services Secretary Robert F. Kennedy Jr. in April 2025 called autism a and he’s lent credence to , including unfounded links to childhood vaccines and .

“This administration is taking us backwards,” said , founder and executive director of The Color of Autism Foundation.

HHS spokesperson Emily Hilliard said in an email that Kennedy’s statements last spring “emphasized the need for increased research into environmental factors contributing to the rise in autism diagnoses, not to stigmatize individuals with autism or their families.” She added that the agency changes are “about making federal support systems work better for children and families.” White House spokesperson Kush Desai did not respond to a request for comment. Neither did the press office for the Department of Education.

The cuts to agencies and research have affected parts of the federal government focused on students with disabilities. In March 2025, Trump signed an to dismantle the Department of Education and of its Office for Civil Rights’ 12 regional offices. This June, his administration special-education oversight to HHS and the Office for Civil Rights to the Department of Justice.

“On paper, it’s a reorganization,” said , a former supervising attorney at the Office for Civil Rights who now runs her own education law firm. In practice, she said, it could leave families whose complaints involve overlapping harms 鈥� such as race and disability discrimination 鈥� caught between agencies built for different jobs. “The hardest thing to prove in these cases is now the thing with no obvious home.”

In April, a year after the order, a Senate committee report from Sen. Bernie Sanders (I-Vt.) concluded that the Office for Civil Rights had in resolutions to discrimination complaints and had a backlog of nearly 12,000 civil rights cases. A recent Washington Post investigation found that the Trump administration “indefinitely froze” many of these cases.

On top of those cuts, the White House vowed to in areas such as school discipline despite research showing that nonwhite and low-income kids disproportionately face barriers to being identified with autism and and other neurodevelopmental diagnoses.

It the Institute of Education Sciences, the Department of Education’s research arm, canceling roughly $900 million in funding for research, including . The administration further data collection on racial disparities in school discipline. The National Institutes of Health and National Science Foundation have referencing terms including “race” and “gender,” focused on diversity, equity, or inclusion.

“If we’re cutting any data collection that helps us understand the problem, we’re not going to fix it,” said , director of the Institute for Social and Health Equity at SUNY-Albany, who led the studies on disparities in autism diagnoses. “All we’re doing right now is making the situation worse.”

The nation’s also appears to lack prominent scientists and Black members and has fewer autistic self-advocates than before, said Proctor of The Color of Autism Foundation, who served on the panel before the Trump administration took over. The panel has also been criticized for including .

HHS’ Hilliard said the members “bring decades of experience in autism research and clinical care” and are committed to aligning “federal policy with gold-standard science.”

Disability advocates say federal officials are focused on the wrong priorities.

“All of it creates chaos where chaos is not necessary,” said Cameron Lynch, a former policy analyst for the .

Disability rights advocates fear the changes to special education oversight weaken the federal safety net for autistic students and others with disabilities, making these systems more confusing when families need help enforcing students’ rights.

David Sitcovsky, Autism Speaks’ vice president of advocacy, said families, especially those from marginalized communities, already often lack support for their children to receive a timely diagnosis or services in their school systems.

“The common thread across these issues is access,” Sitcovsky said. “If their child’s rights are not being upheld, do they have a clear path to get help?”

Smith awaits a decision about her federal civil rights case, which she was told could take more than a year amid the backlog, as Ethan has started fourth grade. She wants Ethan transferred to a school better equipped to support him. She has also requested an expedited hearing for a due process complaint she filed with the state.

The family is also navigating battery charges against Ethan, the first of which was filed in March after the school called police on him for allegedly hitting staff. A police report and an email provided by Smith showed that police arrived at her door hours after Smith informed the school district in writing that she had filed a federal discrimination complaint. Smith also pointed out the timing in several of her complaints.

A Polk County Public Schools spokesperson declined to comment, citing student confidentiality. The Florida Department of Education did not respond to a request for comment.

“As a Black mom, you dare not complain about anything,” Smith said. “Once you start advocating for your kids, it’s a problem. But it’s not these kids’ fault that they have a disability.”

Without timely assessments and interventions, , children of color with disabilities such as Ethan are disproportionately at risk of being and into the juvenile and criminal justice systems.

led the Education Department’s Office for Civil Rights in the Obama and Biden administrations and is now executive director of the Edley Center on Law & Democracy at the University of California-Berkeley School of Law. She said it’s a scary time for families who want to protect their children’s rights.

“People speed if they don’t see a police car,” Lhamon said. “If they think that there’s no one at the federal government watching them in school, we will see an increase in discrimination.”

This article first appeared on 吃瓜不打烊 and is republished here under a .

While the released Aug. 10 does not directly mention autism, Trump’s demand to limit vaccine recommendations has puzzled leading medical groups, doctors, and political analysts alike. The directive landed less than 90 days before midterm elections, which Trump’s own could be jeopardized by anti-vaccine rhetoric.

“The political timing, particularly for members on the Republican side in swing districts, is not good,” said , a former Republican congressman and retired doctor.

Trump’s willingness to gamble on the issue underscores the president’s impatience for his health secretary to deliver on a promise that he’d pinpoint a culprit for the sharp rise in autism diagnoses.

After more than a year, Kennedy and his close, anti-vaccine allies have blown past a deadline to turn up definitive answers in a multimillion-dollar research mission shrouded in secrecy, leaving the president to recycle debunked notions as he publicly assaults vaccines.

“This is about the most closed project that I’ve ever heard of,” Helen Tager-Flusberg, a renowned psychologist who runs the Coalition of Autism Scientists, said of Kennedy’s autism research efforts. “They’re treating it like the Manhattan Project in the 1940s. This is as opaque as it could possibly be.”

The White House did not answer questions about what research is informing the president’s opinions or which vaccines he believes could be linked to autism.

The Department of Health and Human Services said the president’s action builds on the agency’s January announcement that it was reassessing the nation’s vaccine schedule and recommended reducing childhood immunizations based on peer countries’ guidance. However, no other peer country separates the measles, mumps, and rubella vaccine as the president has now ordered.

“As the secretary said, HHS will examine every biologically plausible hypothesis, follow the evidence wherever it leads, and make findings and actions available as they are ready,” HHS spokesperson Emily Hilliard said in an email.

Trump Dreams of a 鈥楤ig Day’

Trump especially has been enamored with finding autism’s cause, saying in August 2025 that it will be “such a big day” after Kennedy assured his boss that he had identified “clearly, almost certainly” factors causing autism that would soon be publicly revealed.

Decades of existing research and scientific studies show genetics is a leading factor. 鈥� including prenatal exposure to pollution, the age of the father, and maternal health 鈥� can also play a role.

But Kennedy has flatly rejected that science, often calling autism a “.” As health secretary, he has looking for root causes in a research effort that’s offered no public status updates and few details about who, or even which agency, is leading the effort.

Prominent autism advocacy groups, scientists, and researchers have not been consulted on the project. Nor have career scientists working at the federal health agencies, according to two officials 吃瓜不打烊 is not naming because they were not authorized to speak on the record about the matter.

Requests to meet with Kennedy on the issue have been ignored, said Delancy Allred, public policy manager at the Autism Society. Allred said that other federal agencies, such as the Department of Education, have engaged more directly with leading autism advocacy groups during meetings.

“No one has gotten to Kennedy. No one has gotten to the secretary level, that I’m aware of,” Allred said. “I think he likes to isolate himself with folks that are in his domain and group.”

Indeed, Kennedy has relied on allies, who’ve joined him over the years on a crusade against childhood vaccines, to lead the agency’s autism research and strategy efforts. It’s a top priority for his closest adviser, , a former environmental activist and , according to the unnamed sources. Spear did not respond to requests to talk about the autism study.

William “Reyn” Archer III 鈥� a former Texas health official, trained obstetrician-gynecologist, and whom Kennedy hired as a senior adviser 鈥� has spent months acquiring Americans’ medical records for political appointees to research a link between vaccines and autism. The National Institutes of Health under Trump has also issued about $50 million in grants to scientists at universities around the country for autism research, although most of the studies are not scheduled to be completed for a few years.

In January, Kennedy also restocked the Interagency Autism Coordinating Committee 鈥� an under-the-radar but influential group 鈥� with a full new slate of 21 members. His appointees include parents of autistic children, vaccine skeptics, and a doctor who was sued for “dangerous” autism treatment. It has met only once during Trump’s current term.

Late last month, the committee abruptly dropped a 336-page strategic plan that echoes some of Kennedy’s talking points: Federal researchers have focused too much on genetic links to autism, the plan suggests.

Diagnoses of autism, a that affects how people communicate and behave, the past couple of decades. The increase is attributed partly to and screening, a more expansive definition of the disorder, and parents having children at a later age, .

Trump and Kennedy have falsely claimed that the rise in diagnoses is isolated among American children 鈥� though diagnoses have dramatically and .

Despite his efforts to launch new research, Kennedy has provided Trump with no conclusive explanation for these increases. Trump began publicly pressing his health secretary on the issue last month when he asked Kennedy: “How are you doing on the autism research?”

Kennedy replied, “We will have an answer for you,” before Trump cut him off.

“That is so important,” the president pressed.

Kennedy’s vaccine agenda has been stymied, in part, by the White House’s infighting. Behind the scenes, White House officials have spent months waving Kennedy off his vaccine agenda amid a historic wave of measles infections.

With his Aug. 10 Oval Office signing, Trump made clear Kennedy’s vaccine agenda remains a top priority. The signing also came at a politically convenient moment: The Senate broke for a five-week recess, just after the White House secured the votes it needed for crucial confirmations of Centers for Disease Control and Prevention Director Erica Schwartz and Attorney General Todd Blanche.

Kennedy Misfires

Many of Kennedy’s claims so far on autism have not withstood scientific scrutiny. Last year, the health secretary said Tylenol use in pregnancy can lead to autism. A major new study in the peer-reviewed journal JAMA debunked the connection 鈥� a political stumble for Trump, who had publicly repeated the claim and urged women not to take the pain reliever.

Kennedy also offered that circumcision could be a cause during a Cabinet meeting in October. published in August in JAMA Pediatrics found no such evidence. He said in 2025 that a linked the in autism. However, his remarks misrepresented the findings; the he referred to later studied thimerosal exposure in vaccines and .

And Kennedy for research that was underway to search for autism’s causes, including potential environmental sources.

Pressed on details about the administration’s work studying autism, NIH Director Jay Bhattacharya admitted that no conclusion had been reached during an interview .

“If you ask me, as a scientist, do I know why we’ve seen this rise in autism? I’ll tell you I don’t know the answer to that question,” he said Aug. 9.

Seated at his desk in the Oval Office the next day, Trump repeatedly made the connection between autism and vaccines just before signing the executive order calling for fewer childhood shots.

Appearing alongside Trump, Kennedy seemed intent on quelling expectations that HHS would produce results expeditiously. He told the president he was racing to find answers before the end of his term.

“Mr. President, you have told us you want answers. So do I,” Kennedy said. “We have just over two years to finish the work, and I know you’re impatient, and we are moving with an urgency that that deadline demands.”

While Trump has repeatedly claimed there’s a link between autism and vaccines, he has not revealed which of the routine vaccinations he believes might be to blame, and he praised the polio vaccine as “amazing” during the White House event.

White House officials declined to answer questions about the status of Kennedy’s efforts to identify the cause of autism during a call a few hours later.

This article first appeared on 吃瓜不打烊 and is republished here under a .

“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聽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 鈥� premised on the idea that people with autism have the normal range of cognitive powers but are imprisoned in malfunctioning bodies 鈥� 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 鈥� 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 鈥� 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, 鈥楾here’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 鈥� those requiring round-the-clock care with ailments like epilepsy and generally lacking in verbal language 鈥� 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 鈥� or whether the child simply grew out of a problem.

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 鈥� 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 鈥� 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.

This article first appeared on 吃瓜不打烊 and is republished here under a .

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, 吃瓜不打烊 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 吃瓜不打烊 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 鈥� 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 鈥� 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 鈥� including William “Reyn” Archer III, a former Texas health official and whom Kennedy hired as a senior adviser 鈥� have led the initiative for the health department to collect and examine medical records.

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 吃瓜不打烊. 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 鈥� often regulated by state laws and run by private companies or nonprofits 鈥� 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 鈥� most often dealing with cases of infectious diseases such as measles or flu 鈥� 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, 鈥榃e 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 鈥� the Nebraska health information exchange used by in the state 鈥� 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 吃瓜不打烊.

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 鈥� 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 鈥� where she was paid nearly 鈥� in December. She was named in April as the chief data strategist for the MAHA Institute 鈥� 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 鈥� it absolutely is 鈥� 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.

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 鈥� Archer and Hannah Anderson, his former deputy chief of staff 鈥� 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.”

吃瓜不打烊 data reporter Maia Rosenfeld contributed to this article.

This article first appeared on 吃瓜不打烊 and is republished here under a .

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 鈥� 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, 鈥榃ell, y’all almost killed him,’” she recalled officials telling her. 吃瓜不打烊 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 鈥� flummoxing officials in Missouri, Illinois, Minnesota, Georgia, and beyond 鈥� 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.

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 鈥� 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 吃瓜不打烊. “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 吃瓜不打烊.

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.

This article first appeared on 吃瓜不打烊 and is republished here under a .

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.

This article first appeared on 吃瓜不打烊 and is republished here under a .

吃瓜不打烊 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 鈥楪old 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.

鈥� 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.

鈥� 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.

鈥� 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.

鈥� 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.

鈥� 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 鈥� 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 鈥� 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 鈥� 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.

鈥� 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.

鈥� Stephen Cripe, Monticello, Indiana

This article first appeared on 吃瓜不打烊 and is republished here under a .

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, 鈥榃e 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 鈥� falsely, scientists say 鈥� 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 吃瓜不打烊.

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 鈥� , evidence so far indicates 鈥� 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, 鈥楾he 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.

This article first appeared on 吃瓜不打烊 and is republished here under a .

Julie Rovner 吃瓜不打烊 Read Julie's stories. Julie Rovner is chief Washington correspondent and host of 吃瓜不打烊’ 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 鈥� having done away earlier this year with a Biden-era regulation that prevented medical debt from being included on consumers’ credit reports 鈥� is now telling states they cannot pass their own laws to bar the practice.

This week’s panelists are Julie Rovner of 吃瓜不打烊, Paige Winfield Cunningham of The Washington Post, Maya Goldman of Axios, and Alice Miranda Ollstein of Politico.

Panelists

Paige Winfield Cunningham The Washington Post Read Paige's stories.

Maya Goldman Axios

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 鈥� 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: 吃瓜不打烊’ “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: 吃瓜不打烊’ “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:

• The Washington Post’s “,” by Paige Winfield Cunningham
• 吃瓜不打烊’ “Doctors Muffled as Florida Moves To End Decades of Childhood Vaccination Mandates,” by Arthur Allen.
• CBS News’ “,” by Céline Gounder.

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And subscribe to “What the Health? From 吃瓜不打烊” on , , , , , or wherever you listen to podcasts.

This article first appeared on 吃瓜不打烊 and is republished here under a .

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. 鈥� 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 鈥� 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 鈥� between law, science, and public perception 鈥� 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 鈥� , 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 鈥� 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. 鈥� 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 鈥� 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 鈥� 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 鈥� 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 鈥� 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. 鈥� We never conquer germs, we wrestle them to a draw. That’s the best we do. And so this is a real 鈥� 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 鈥� 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 鈥� 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. 鈥� And it’s really important that everyone understands that compensation does not mean that the vaccine actually caused the injury. 鈥� 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 鈥� 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.

This article first appeared on 吃瓜不打烊 and is republished here under a .