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 鈥榲accines 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 鈥� though not until a decade after it was published, during which there were sharp declines in U.S. vaccination rates.

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麻豆女优 Health News California correspondent Christine Mai-Duc discussed the expiration of enhanced Affordable Care Act subsidies on LAist’s AirTalk on Jan. 20.

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麻豆女优 Health News chief rural correspondent Sarah Jane Tribble discussed the new Rural Health Transformation Program on Community Health Center Inc.’s Conversations on Health Care on Jan. 8.

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• Read the 麻豆女优 Health News series “Rural Health Payout: Tracking the $50B Rural Health Fund.”

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

Autism Care: Pros and Cons

I am writing to provide additional context and research for your article on state cuts to the autism therapy known as applied behavior analysis, or ABA (“It’s the 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

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Dressed in blue with a big ribbon in her blond curls, the 3-year-old sat in her mother’s lap carefully enunciating a classmate’s first name after hearing the words “best friend.” Just months ago, Gaile Osborne didn’t expect her adoptive daughter would make friends at school.

Diagnosed with autism at 14 months, Aubreigh Osborne started this year struggling to control outbursts and sometimes hurting herself. Her trouble with social interactions made her family reluctant to go out in public.

But this summer, they started applied behavior analysis therapy, commonly called ABA, which often is used to help people diagnosed with autism improve social interactions and communication. A tech comes to the family’s home five days a week to work with Aubreigh.

Since then, she has started preschool, begun eating more consistently, succeeded at toilet training, had a quiet, in-and-out grocery run with her mom, and made a best friend. All firsts.

“That’s what ABA is giving us: moments of normalcy,” Gaile Osborne said.

But in October, Aubreigh’s weekly therapy hours were abruptly halved from 30 to 15, a byproduct of her state’s effort to cut Medicaid spending.

Other families around the country have also recently had their access to the therapy challenged as state officials make deep cuts to Medicaid 鈥� the public health insurance that covers people with low incomes and disabilities. North Carolina attempted to cut payments to ABA providers by 10%. Nebraska cut payments by nearly 50% for some ABA providers. Payment reductions also are on the table in Colorado and Indiana, among other states.

Efforts to scale back come as state Medicaid programs have seen spending on the autism therapy balloon in recent years. Payments for the therapy in North Carolina, which were $122 million in fiscal year 2022, are in fiscal 2026, a 423% increase. Nebraska saw a 1,700% jump in spending in recent years. Indiana saw a 2,800% rise.

Heightened awareness and diagnosis of autism means more families are seeking treatment for their children, which can range from 10 to 40 hours of services a week, according to Mariel Fernandez, vice president of government affairs at the . The treatment is intensive: Comprehensive therapy can include 30-40 hours of direct treatment a week, while more focused therapy may still consist of 10-25 hours a week, released by the council.

It’s also a relatively recent coverage area for Medicaid. The federal government autism treatments in 2014, but not all covered ABA, which Fernandez called the “gold standard,” until 2022.

State budget shortfalls and the nearly $1 trillion in looming Medicaid spending reductions from President Donald Trump’s One Big Beautiful Bill Act have prompted state budget managers to trim the autism therapy and other growing line items in their Medicaid spending.

So, too, have a series of state and federal audits that raised questions about payments to some ABA providers. A of Indiana’s Medicaid program estimated at least $56 million in improper payments in 2019 and 2020, noting some providers had billed for excessive hours, including during nap time. A similar audit in Wisconsin estimated at least $18.5 million in improper payments in 2021 and 2022. In Minnesota, state officials had into autism providers as of this summer, after the late last year as part of an investigation into Medicaid fraud.

Families Fight Back

But efforts to rein in spending on the therapy have also triggered backlash from families who depend on it.

In North Carolina, families of 21 children with autism filed a lawsuit challenging the 10% provider payment cut. In Colorado, a group of providers and parents is over its move to require prior authorization and reduce reimbursement rates for the therapy.

And in Nebraska, families and advocates say cuts of the magnitude the state implemented 鈥� from 28% to 79%, depending on the service 鈥� could jeopardize their access to the treatment.

“They’re scared that they’ve had this access, their children have made great progress, and now the rug is being yanked out from under them,” said Cathy Martinez, president of the , a nonprofit in Lincoln, Nebraska, that supports autistic people and their families.

Martinez spent years advocating for Nebraska to mandate coverage of ABA therapy after her family went bankrupt paying out-of-pocket for the treatment for her son Jake. He was diagnosed with autism as a 2-year-old in 2005 and began ABA therapy in 2006, which Martinez credited with helping him learn to read, write, use an assistive communication device, and use the bathroom.

To pay for the $60,000-a-year treatment, Martinez said, her family borrowed money from a relative and took out a second mortgage before ultimately filing for bankruptcy.

“I was very angry that my family had to file bankruptcy in order to provide our son with something that every doctor that he saw recommended,” Martinez said. “No family should have to choose between bankruptcy and helping their child.”

Nebraska mandated insurance coverage for autism services in 2014. Now, Martinez worries the state’s rate cuts could prompt providers to pull out, limiting the access she fought hard to win.

Her fears appeared substantiated in late September when Above and Beyond Therapy, one of the largest ABA service providers in Nebraska, notified families it planned to terminate its participation in Nebraska’s Medicaid program, citing the provider rate cuts.

Above and Beyond’s website advertises services in at least eight states. The company was paid more than $28.5 million by Nebraska’s Medicaid managed-care program in 2024, according to a . That was about a third of the program’s total spending on the therapy that year and four times as much as the next largest provider. CEO Matt Rokowsky did not respond to multiple interview requests.

A week after announcing it would stop participating in Nebraska Medicaid, the company reversed course, citing a “tremendous outpouring of calls, emails, and heartfelt messages” in a letter to families.

Danielle Westman, whose 15-year-old son, Caleb, receives 10 hours of at-home ABA services a week from Above and Beyond, was relieved by the announcement. Caleb is semiverbal and has a history of wandering away from caregivers.

“I won’t go to any other company,” Westman said. “A lot of other ABA companies want us to go to a center during normal business hours. My son has a lot of anxiety, high anxiety, so being at home in his safe area has been amazing.”

Nebraska officials the state previously had the highest Medicaid reimbursement rates for ABA in the nation and that the new rates still compare favorably to neighboring states’ the services are “available and sustainable going forward.”

States Struggle With High Spending

State Medicaid Director said his agency is closely tracking fallout. Deputy Director said that while no ABA providers have left the state following the cuts, one provider stopped taking Medicaid payments for the therapy. New providers have also entered Nebraska since officials announced the cuts.

One Nebraska ABA provider has even applauded the rate cuts. Corey Cohrs, CEO of , which has seven locations in the Omaha area, has been critical of what he sees as an overemphasis by some ABA providers on providing a blanket 40 hours of services per child per week. He likened it to prescribing chemotherapy to every cancer patient, regardless of severity, because it’s the most expensive.

“You can then, as a result, make more money per patient and you’re not using clinical decision-making to determine what’s the right path,” Cohrs said.

Nebraska put a on the services without additional review, and the new rates are workable for providers, Cohrs said, unless their business model is overly predicated on high Medicaid rates.

In North Carolina, Aubreigh Osborne’s ABA services were restored largely due to her mother’s persistence in calling person after person in the state’s Medicaid system to make the case for her daughter’s care.

And for the time being, Gaile Osborne won’t have to worry about the legislative squabbles affecting her daughter’s care. In early December, North Carolina Gov. Josh Stein canceled all the Medicaid cuts enacted in October, citing lawsuits like the one brought by families of children with autism.

“DHHS can read the writing on the wall,” , announcing the state health department’s reversal. “That’s what’s changed. Here’s what has not changed. Medicaid still does not have enough money to get through the rest of the budget year.”

Osborne is executive director of Foster Family Alliance, a prominent foster care advocacy organization in the state, and taught special education for nearly 20 years. Despite her experience, she didn’t know how to help Aubreigh improve socially. Initially skeptical about ABA, she now sees it as a bridge to her daughter’s well-being.

“It’s not perfect,” Osborne said. “But the growth in under a year is just unreal.”

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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.

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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 麻豆女优 Health News.

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

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

Cassidy Goes Quiet

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

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

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

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

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

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

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

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

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

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

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

What the Research Shows

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

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

Since then, studies have clearly established that autism occurs as a result of genetics or fetal development. Although knowledge gaps persist, studies have shown that premature birth, older parents, viral infections, and the use of certain drugs during pregnancy 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.

麻豆女优 Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at 麻豆女优鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

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Millions of people in Republican-dominated states are among those seeing their Affordable Care Act plan premiums spike for 2026 as enhanced, pandemic-era subsidies expire. Yet Republicans in the White House and on Capitol Hill are firming up their opposition to extending those additional payments 鈥� at least for now.

Meanwhile, Democrats may not have achieved their shutdown goal of renewing the subsidies, but they have returned health care 鈥� one of their top issues with voters 鈥� to the national agenda.

This week’s panelists are Julie Rovner of 麻豆女优 Health News, Paige Winfield Cunningham of The Washington Post, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, and Shefali Luthra of The 19th.

Panelists

Among the takeaways from this week’s episode:

• Democrats’ focus on insurance costs has pushed health care back into the national spotlight. But far from a bipartisan compromise, lawmakers remain split over how to address the issue, with the enhanced premium ACA subsidies still set to expire and top Republicans musing about instead putting that money into health savings accounts.
• A new change to the Centers for Disease Control and Prevention website suggests a link between vaccines and autism, amplifying the unsubstantiated claim championed by Health and Human Services Secretary Robert F. Kennedy Jr. Meanwhile, the Trump administration is facing blowback over a major report on transgender health that was written by critics of such care 鈥� and without peer review.
• And some Republicans are seeking to tie ACA subsidies to abortion restrictions, providing only the latest example of how the issue regularly becomes tangled in government spending battles. Democrats are unlikely to agree to such changes, especially if Republicans push to direct subsidies into health savings accounts 鈥� meaning, theoretically, that any abortion limitations there would be targeting citizens’ private funds.

Also this week, Rovner interviews Avik Roy, a GOP health policy adviser and co-founder and chair of the Foundation for Research on Equal Opportunity.

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

Julie Rovner: CNBC’s “,” by Scott Zamost, Paige Tortorelli, and Melissa Lee.听听

Paige Winfield Cunningham: The Wall Street Journal’s “,” by Christopher Weaver, Anna Wilde Mathews, and Tom McGinty.听听

Joanne Kenen: ProPublica’s “,” by Nat Lash.听听

Shefali Luthra: ProPublica’s “,” by Kavitha Surana and Lizzie Presser.听听

Also mentioned in this week’s podcast:

• The Washington Post’s “,” by Riley Beggin and Theodoric Meyer.
• The Wall Street Journal’s “,” by Liz Essley Whyte.

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

Julie Rovner:听Hello from 麻豆女优 Health News and WAMU Public Radio in Washington,听D.C., and welcome to听“What the Health?”听I’m听Julie Rovner,听chief Washington听correspondent for 麻豆女优 Health News, and听I’m听joined by some of the best and smartest health reporters in Washington.听We’re听taping this week on Thursday, Nov.听20,听at 10听a.m. As always, news happens fast,听and things might have changed by the time you hear this. So,听here we go.听

Today,听we are joined via video conference by Paige Winfield Cunningham of听The Washington Post.听

Paige Winfield Cunningham:听Hi,听Julie.听

Rovner:听Shefali Luthra of听The听19th.听

Shefali Luthra:听Hello.听

Rovner:听And听Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine.听

Joanne Kenen:听Hi,听everybody.听

Rovner:听Later in this episode,听we’ll听have my interview with Avik Roy, longtime Republican听health听care听adviser听and听chair of the Foundation for听Research on听Equal听Opportunity.听But first,听this week’s news.听

So,听Democrats may not have听“won the shutdown,”听but they听definitely got听health reform back on the national agenda. The last time we had such a full-scale health debate was in 2017, which听didn’t听end particularly well for Republicans. For a while,听it looked like there might be enough Republicans who were worried about听鈥斕齩h, I听don’t听know听鈥斕齮heir voters seeing their ACA听[Affordable Care Act]听insurance made effectively unaffordable that there might be a compromise in the offing.听But now it seems that听ship听has听sailed,听and the two sides have retreated to their respective corners. That听certainly seemed to be听the case at the Senate Finance Committee hearing on Wednesday,听where Republicans and Democrats听basically talked听past each other for three hours. Am I missing something? Is there some glimmer of hope here that听I’m听not seeing that when they have this vote in a couple of weeks, the Republicans are all going to say,听Yeah,听let’s听extend those subsidies?听

Winfield Cunningham:听It’s听funny, Julie, I was thinking, was it last weekend,听I think,听that Trump tweeted about we need to bypass the insurers and send the money directly to consumers? And for a couple of days,听there was all this buzz around听Is this going to be yet another chance for Republicans to do something big on health听care?听And the whole time I was thinking:听Was anybody around in 2017? This听isn’t听going to go听anywhere.听And especially,听you could sort of predict this just because calls to redirect the subsidies听鈥斕齱hich are a core part of the ACA听鈥斕齛way from the marketplaces, also a core part of the ACA听鈥斕齞irectly听into tax-free savings accounts听obviously听[were]听always going to be a no-go with Democrats.听So听the idea that this was听kind of what听Republicans were talking about, this听isn’t听even in the realm of possibilities that could be a bipartisan agreement on health听care.听

There seems for a little while to be a semi-earnest effort in the Senate to come up with some kind of bipartisan plan.听I know I spoke with folks for Sen.听[Jeanne]听Shaheen听[D-N.H.]听earlier this week who say听they’ve听been talking to 10 to 12 Republican offices who say听they’re听interested in some kind of deal and extending the subsidies.听But honestly, when you start stacking up听all of听the barriers that would be in the way of getting a deal, one of them is abortion funding.听I mean, this seems听鈥斕�

Rovner:听We’ll听get to that later.听Don’t听jump the gun on that.听

Winfield Cunningham:听But听that’s听a huge one. And then also,听just the inability,听and just how far apart the parties听are on听talking about health听care affordability and how you manage to bring down costs for people.听It’s just听really hard听to see this going anywhere.听So,听my prediction is that we see Republicans听kind of coalesce听around their own thing. Democrats coalesce around their own thing.听And ultimately,听we听don’t听see an extension of the subsidies.听

Rovner:听What happens in January,听though,听when people听actually start听coming to town hall meetings and saying:听Hey, we had to give up our health insurance because it was going up $4,000 a month?听Might this build when these cuts听actually occur听in January?听

Kenen:听The Republicans have floated health savings accounts for听actually a听couple of decades now.听

Rovner:听Since the 1990s.听

Kenen:听Right, that’s decades.听

Rovner:听The first pilot project was in HIPAA听[Health Insurance Portability and Accountability Act]听in 1996.听

Kenen:听And it is not what people want. I mean, it is what some people want in conjunction with听an听HSA alone. There are plans that are a combination of听鈥斕齣n the exchange it would be a听“bronze”听鈥斕齜ut this is not what the American people have.听鈥� They have not been saying:听Please,听take away my health听care,听and give me a couple of thousand听bucks听instead.听That’s听not what听we’re听hearing,听or my health听insurance,听I should听say,听and听take away.听

Rovner:听That’s听the point. Also,听I’m听seeing all these Republicans now saying we should not be giving money to the big, rich, bloated insurance companies,听who we do know are unpopular instead听鈥斕�

Kenen:听Except for Medicare Advantage.听

Rovner:听Thank you for finishing my听sentence. So,听finish my听sentence听for me, Joanne.听

Kenen:听Medicare Advantage, which has bipartisan support now听鈥斕齨ot without some qualifications and criticism听鈥斕齅edicare Advantage is here. Many Democrats use it,听and many听Democratic lawmakers support it. But Medicare Advantage is private insurers who are being paid more than government-traditional Medicare to pay for people’s health听care.听So听it is not a coherent,听well-thought-out ideologically,听or technically,听or politically savvy plan that is going to solve the Republicans’听problems on Jan.听1, Jan.听2, Jan.听3, and you name the date after that.听People who got subsidies for health听care insurance are going to lose them, and many of them are听[President Donald]听Trump voters. And听that’s听a reality, period.听

Rovner:听Paige, I know you’ve been looking into this听pretty closely.听Is there anything new here? I mean, it does seem that giving people money to go out and bargain on their own has been the Republican mantra,听I know,听since the 1990s.听They’ve听had听all this time. Where is the plan?听

Winfield Cunningham:听Let’s听just think about the numbers here on HSA. So,听I think the average subsidy听[that]听the average marketplace consumer gets is around $6,500. OK,听that’s听fine听鈥� great听鈥斕齣f听you’re听healthy. If you’re sick听鈥斕齣f you have diabetes,听or you have cancer听鈥斕齭ay you have $6,500 in your account, [and] you don’t have health听insurance,听that’s not going to come anywhere close to the cost that you need to cover your cost of care.听So听this whole conversation听isn’t听about听the healthy听people, right? The conversation is about the sick people who听bring up听the costs, who need听the insurance, who听can’t听afford the care. And HSAs and FSAs听[flexible spending听accounts]听鈥斕齟specially HSAs,听though听鈥斕齀听think听are听largely used听by wealthier people, healthier people, and it is a way to听maybe put听a听couple听extra hundred听bucks听in your pocket to pay for health听care. It is not a sweeping long-term solution to making sure that people can afford the cost of care.听

Rovner:听Right.听It’s听a great way听to pay for your eyeglasses and your dental care,听maybe,听if听you听don’t听need a lot of dental care.听

Kenen:听It’s听not just sick people.听It’s听also听pregnancy.听It’s听also people who are healthy until they get sick. You听can听鈥斕�

Rovner:听I keep saying this:听I fell and broke my wrist,听and it cost $30,000. $6,500 would not have begun to put a dent in it. Sorry, Shefali. You wanted to say something?听

Luthra:听No, I was just going to听say to听Joanne’s point about pregnancy听and听your point about breaking bones: Some of the people who are most vulnerable in this kind of situation听[are]听families.听Maybe you听give birth, something the administration really talks about supporting.听Maybe, I听don’t听know,听you use fertility treatment.听Maybe you听have two kids. One gets the flu;听one breaks a bone. These are not expenses you听anticipated. And the very core of this pronatalist,听conservative ideology of supporting families, helping听it听become听easier to raise children,听becomes a lot harder when you听don’t听have affordable health insurance.听

Kenen:听I mean, there are some.听[Louisiana Republican Sen. Bill]听Cassidy’s plan is a little different. Democrats are still not going to love it. It is money in your pocket of a health savings account or a flexible spending听account听鈥斕齀 keep reading different details of what it is听鈥斕齝ombined with some kind of听health insurance so that the exposure is not infinite, but听it’s听also not听nothing.听It’s听not the same as听Trump’s plan.听There’s听more protection for people in his version. But we听haven’t听really seen what his version looks like in detail. I keep reading about all these proposals,听and I听can’t听figure out exactly what they look like because I听don’t听think they know yet.听

Rovner:听Right, I听don’t听think听they’ve听been put on paper yet.听

Winfield Cunningham:听Well,听yeah, I asked Cassidy’s office for details earlier this week,听and they听didn’t听respond. I听don’t听know if听they’re听waiting to see what polls well among colleagues. But I was going to say:听On听the politics,听I’m听never great听on听political analysis because I feel like听I’m听always wrong. But I would say听[the]听last time Republicans tried to go after ACA听in 2017, Democrats听really successfully听leveraged听that in the following year. They talked about trying to go after听protections听for preexisting conditions.听And听you’ve听already seen, I think, [that]听the DCCC听[Democratic Congressional Campaign Committee]听already put out some ads on the subsidies. So,听this is going to be a huge, huge point for Democrats.听They’re听going to be talking about this nonstop next year.听So,听I imagine it would hurt Republicans.听

I’d听also add, I think that Democrats sometimes have more to lose on health听care than Republicans only because health听care is not a top issue for Republican voters in the way that it is for听Democratic voters. So,听sometimes,听Republicans can make missteps,听and then their voters are more forgiving of it than听maybe they听would be of Democrats.听

Rovner:听Although听we’ll听see, because as we keep saying,听there’s听a lot of Republicans in a lot of these states that have been using these extra subsidies. When they go away,听they’re听going to be really ticked off.听

Kenen:听Could听I just say one last thing? And听we’ve听said this听again,听we’ve听said this repeatedly, but it is worth bearing,听repeating听is:听Congress usually gives people benefits. Taking away benefits is not really a politically savvy approach. And then,听yes, Medicaid听isn’t听until after the election, after the 2026 elections.听But there’s going to be repercussions from the Medicaid law that听[are]听also going to be felt in the near term in terms of how听are hospitals听preparing,听and responding,听and cutting back,听and what’s available in communities,听and debates in their state legislatures about how they fill budget holes,听and what services will be cut.听This is turning into a health听care year on both the ACA health costs and affordability and the impact of Medicaid that usually helps Democrats. But we are living听in听a time of intense short attention spans.听We’re听not living in听鈥μ齮he parallels听don’t听always apply to the current situation, but听it’s听a听Democratic issue.听

Rovner:听Yeah. Well,听continuing on听my theme of听maybe Democrats听didn’t听really lose the shutdown despite what many of them said,听I’m听kind of surprised听at all the things that did get into the continuing resolution that passed last week and reopened听the government. Democrats got all the federal workers back pay, which,听despite being the law,听was not a given. They got the federal worker firings during the shutdown reversed with a promise of no more听RIFs [reductions in force]听until at least the end of the next CR at the end of January. Because the CR also included full-year funding for the Department of Agriculture, they also got SNAP听[Supplemental Nutrition Assistance Program]听fully funded through next September.听

But two other听really nerdy听things were tucked into the bill that could turn into a big deal.听One is the explicit rejection of a proposal to cut in half the budget of the听Government听Accountability听Office, GAO, and preserving the right of the GAO’s head, the听comptroller听general,听to sue the administration for violating the Impoundment Act, which is what protects Congress’听power of the purse. This is really the fight over the funding bills, right?听We’ve听got the Trump administration saying,听Congress, we听don’t听actually care听what you do in these spending bills.听We’re听going to decide how to spend this money.听鈥斕齱hich is not what the Constitution says.听

Kenen:听But the Congress has its听objective. I mean as the administration听鈥斕�

Rovner:听The GAO has,听and听they’re听suing.听

Kenen:听Right. But at the end of the day,听what’s听happening in the courts is not really changing behavior all that much, so听it’s听still听鈥斕�

Rovner:听Because it听hasn’t听all been resolved yet.听

Kenen:听It’s听a TBD听[to be听determined]. I think听we’ll听know more after the听tariffs听ruling.听But when they do suffer a defeat in court, they just sort of find another way around.听Even if they do something, the court says they just find another way of doing what they wanted to听accomplish.听

Rovner:听Yes, which we have seen.听And听apparently听they did.听I saw a story this week that they were trying to put in a provision that would stop what we call听the pocket听rescissions. Right now, the administration can say,听We听don’t want to spend this money,听and then Congress votes on听whether or not听to agree with the administration.听But if they do it at the end of the fiscal year,听it’s听too late. And听that’s听called听a pocket听rescission. There was some language to stop that,听which also appears on its face to be illegal. And apparently Russell听Vought听of OMB听[Office of Management and Budget]听complained,听and it was taken out of the bill before it was passed. So that fight听[is]听going听to听still听continue.听

Well,听there’s听another even more nerdy provision that resets something called the PAYGO听[pay-as-you-go]听scorecard to zero. Among other things, this cancels the required cuts to Medicare that听would’ve听been the result of the Republicans听failing to offset听the cost of the tax cuts in last summer’s听big听budget听bill. You may have heard Democrats referring to these cuts and thought they meant Medicaid,听thought they were misspeaking.听They were not.听There actually was a half-a-billion-dollar cut to Medicare that was in the offing.听But canceling this kind of cuts both ways because it takes away a talking point for Democrats, right?听

Kenen:听Yes, but I听don’t听know that that听one’s听going to matter so much in听six, 10, 12 months. Because also,听we’re听used to them not听doing听the cuts to Medicare that听they’ve听said.听I mean, they walk to the very edge听of the plank and jump back into the boat听over and over again听since 2012 at least, probably before that.听So听I听don’t听know听that听that has听the staying听power.听It’s听hard. Like the word sequester, unfortunately we understand it, but a lot of people think听it’s听a jury. I mean cuts that听didn’t听happen听鈥斕�

Rovner:听Right, and cuts that are not going to happen.听We’ll听see how long it takes the Democrats to wipe the Medicare cuts out of their talking points, which they now听have to听do because that was in the bill.听Well, meanwhile, even with the government back open, the听chaos听continues at Robert F. Kennedy Jr.’s听Department of Health and Human Services, where just this morning听we’ve听seen a change to the CDC听[Centers for Disease Control and Prevention]听website suggesting that vaccines might cause autism. They do not. And a new large-scale study听showing听that fluoride in typical doses听doesn’t听lower kids’听IQs, which is the exact opposite of what RFK听Jr. has been saying. Paige and Shefali,听you’re听following this report on transgender care, which is another sort of big controversial issue over at HHS.听

Winfield Cunningham:听Yeah.听So听what we saw yesterday was听basically the听final release of this report, which was ordered up by Trump via executive order earlier this year. And they had released听an initial听draft last spring, but at that time, they听didn’t听release the names of the authors on the report, nor did听it听have any peer reviewers. And that was the focus of a lot of the criticism of the report听鈥斕齮hat there听wasn’t听transparency there to see who was听actually reviewing听all of听this evidence around gender-transition care for kids. So,听we saw the names of the nine authors听were released听yesterday,听as well as about eight peer reviewers. This also, not shockingly, did not engender a lot of wide confidence in the medical community about this report. And the authors of the report all have prior histories of criticizing how gender-transition care is delivered in the U.S. And critics have pointed to that saying:听Well, the report’s not legitimate because听basically the听people were handpicked by the administration to deliver a particular conclusion.听

And听so听I’ve听been talking to some of the authors. They are of course defensive. They say,听Look听at the research.听Look at the report.听The report does听skew听very critical听of transition care and recommends counseling first, which is something that some of the leading medical organizations are pushing back against. So,听I听don’t听know where all this is going to go. I think the debate听[is]听going to continue, but certainly听we’re听going to see the administration use this report to try to听undergird听its arguments for听a听dramatic crackdown on transition care.听They’re听actually working听on two rules at CMS听[Centers for Medicare & Medicaid Services]听right now which would penalize hospitals for providing transition care for kids. Those rules are being reviewed I think by the White House right now, but听we’re听probably going听to see those听finalized听sometime next year.听

Luthra:听I think some really important context for us to consider here听鈥斕齣n this conversation as well as what the actual reality of health听care looks like for trans youth听鈥斕齛nd in particular, the thing that really stands out to me as we look at this report and look at these criticisms that these authors are levying,听is that already, for young people who are getting gender-affirming care, it’s a very involved process. There听aren’t听a lot of providers who offer this to begin with. There is a lot of counseling. The idea that young people are getting these gender-affirming surgeries at听a young age听without any sort of long-thought,听long conversation听just听isn’t听really borne out by evidence. There is a lot of conversation, a听lot of counseling. A lot of youth听start听with things that are reversible. You start with听maybe something听that听doesn’t听have that same level of permanence before ensuring that this is something that people truly do want. And I think听that’s听really important.听

The other thing that really sits with me in this conversation听鈥斕齱hich I think this is a conversation that has been really built up by a lot of social conservatives who are looking for a new target after they sort of lost the war on gay marriage听鈥斕齣s that young people are sort of a starting point. And听we’ve听already听seen a lot of efforts in some states to expand restrictions on gender-affirming care听鈥斕齨ot only for young people, but for people of all ages who are trans. It reminds me a lot,听actually,听of听the conversation around abortion,听where you began with restrictions for young people as a pathway to restricting it writ large.听And I think we听have to听be听really aware听of that context when we look at how this political and policy fight unfolds.听

Rovner:听Yeah,听there’s听also a lot less of this care听you’re听saying. It is hard to听get.听There’s听less available than there was at the start of the year.听We’ve听seen so many of these universities and hospitals knuckle under and say,听We听just听don’t听want to be part of this because听they’re听threatening to take away听all of听our funding.听There’s听a new study in JAMA Internal Medicine this week that found that HHS cuts from earlier this year disrupted more than 400 clinical trials,听and treatment for more than 74,000 patients who were听participating听in those trials. Most impacted, according to the report, were trials on infectious diseases and prevention. But a second study chronicled the deep cuts to gender-affirming care. So,听it’s听not even how听it’s听being听delivered,听it’s听if听it’s听being delivered at this point, right?听

Luthra:听The people who are getting this health听care have gone through a lot of hoops to get this care already. They have shown a real听鈥μ齞esire is the wrong word. They have worked听very, very hard听to get here in a way that you听don’t听do if this听isn’t听something you have thought about a lot.听

Rovner:听It’s听not like quitting smoking.听

Winfield Cunningham:听But I also add, this听isn’t听a conversation听that’s听only happening in the U.S.听This is happening around the world. You have seen a huge surge of young people seeking this care.听So听it’s听kind of a听relatively new听thing. And in a way, just in terms of the number of听people, and听you’ve听seen. 鈥μ齀 think New Zealand听actually this听week announced that听they’re听putting new restrictions on puberty blockers for young people.听You’ve听also seen similar things in the U.K.听[United Kingdom]听and the Netherlands. And听they’ve听also conducted reviews, just raising questions around how much evidence we have around the long-term benefits or harms of giving these treatments to kids.听So听I think听it’s听an important conversation for researchers to听be having. And I think听it’s听unfortunate听it’s听gotten so politicized,听because this is,听to Shefali’s point,听really important听for a lot of children in the U.S.听and around the world.听And yeah, it’s听really important听for researchers to have a听really clear听picture of the best way to help them.听

Rovner:听Yeah, I was going to say this is one of those things听that’s听both a culture war issue,听and a legitimate medical scientific issue that听we’re听looking at.听听

Well, meanwhile,听it’s听not just policy听that’s听a little chaotic at HHS. According to听The Wall Street Journal, the secretary听reportedly considered听sidelining FDA听[Food and Drug Administration]听Commissioner Marty Makary because of his inability to control infighting between some of his division directors. Yet it feels like听FDA听is听kind of the听least of Kennedy’s worries right now. Also ongoing听are听fights between supporters of MAGA, the Make America Great Again movement,听and MAHA, the Make America Healthy Again movement,听over who should听be in charge of听health policy. Is this just usual听infighting,听or is this sort of new and different and听[at]听a more significant level than we听often听see?听

Kenen:听I’m not sure we know yet,听because some of this stuff is boiling up听pretty quickly.听But听we’re听seeing all sorts of splits and fractures on the Republican side that we have not been accustomed to seeing. Trump is听very good听at unifying his party,听and papering over things,听and changing the subject.听He’s听a very, very gifted controller of narrative.听And the fact that听we’re听seeing policy splits as well as the听[Jeffrey]听Epstein scandal,听and all sorts of other things,听it’s听not one crack.听There’s听a bunch. And crack might be too听strong听a word听鈥斕齱e听don’t听know yet听鈥斕齜ut听we’re听seeing more dissent,听and more disagreement bubbling over in public than we had before.听

Rovner:听Yes, and听that’s听what’s听so unusual to me.听Have these people had long knives out for each other?听Absolutely. Have we seen big front-page stories about it? Not so much.听

Kenen:听And听it’s听heightened since the New Jersey and Virginia races.听It’s听more blame-gaming going around.听So听I think听we’re听seeing a slightly different internal landscape among Republicans, as we just said,听it’s听apparent听how much these health听care versus public health versus vaccine versus MAHA versus MAGA, these听鈥μ齢ow much they splinter and stay splintered.听It’s听interesting to watch right now. I mean,听Kennedy听hasn’t听been that engaged on the health policy side, the insurance fight, the HSAs, FSAs, subsidies.听That’s听not where his public energy is.听

Rovner:听He’s听left that to Dr.听[Mehmet]听Oz mostly.听

Kenen:听Right. And we know听what’s听important to him.听There’s听a long list听of changes he wants to make on that side. So, I think听it’s听interesting. I think听it’s听significant. I听don’t听know what听it’s听going to look like in a month.听

Rovner:听OK.听We’re听going to take a quick break,听and we will听be right听back.听

OK.听We’re听back. Well, there is also news,听finally,听this week on the reproductive health front,听as you tried to jump the gun, Paige. Circling back for a minute to the impending vote on extending the enhanced ACA subsidies, abortion turns out to be a big obstacle to any potential compromise, even if there was one to be had. This听shouldn’t听really be surprising. Abortion very nearly scuttled the passage of the ACA itself in 2010听鈥斕�

Luthra:听At the very last minute.听

Rovner:听At the very last minute. And anti-abortion forces still think the law is too lenient, even though听it’s听a lot more restrictive than abortion-rights backers had wanted and fought for. Shefali, are Republicans really going to refuse to stop premium increases for voters just to please the anti-abortion movement?听

Luthra:听I听don’t听see听why not. It seems like this is听鈥� I mean, really,听though,听the anti-abortion movement in some ways took a听pretty big听loss getting Trump as the Republican president. This is someone who does not really want to capitalize on the post-ops听momentum with a national ban. And听so听they’re听looking where they听can to听try and restrict abortion through other means听鈥斕齱hether that meant the Planned Parenthood defunding, whether that means trying to get this mifepristone reviewed,听or if it means trying to enact more restrictions through ACA subsidies. It really听seems like听kind of听a no-brainer. If you听can’t听get this win for听a very important听constituency from the president, you do what you can听everywhere听else to try and get听it,听or听get at least what you can.听

Rovner:听OK. Paige, now you get to say what you wanted to say before.听

Winfield Cunningham:听Well, no,听I guess I听was just going to say again,听I’ve听just been thinking a lot about 2017 and how health reform never seems to go forward. But听yeah, this is a perennial issue.听It’s听all about the听Hyde听[Amendment]听language and anti-abortion folks,听and Republicans have always been very resentful of how the debate about the ACA went about. And they are upset because they think these plans are that taxpayer dollars are still going to abortions,听et cetera, et cetera.听And actually, I听was thinking with this HSA idea of rerouting the subsidies to the HSAs, the problem would听actually be听even more pronounced,听because they’re going to demand that you attach then abortion restrictions to money that people have in their own accounts that they’re supposed to be using for health听care. And that just seems like even more of a no-go with Democrats. I think all of us knew this was a big obstacle, but it takes a little bit of time for people听on听[Capitol]听Hill to figure this out, but I think听it’s听becoming听more and more听clear that this is just a听really massive听barrier.听

Rovner:听Yeah, it is. All听right,听well the abortion fight also continues in the states. South Carolina lawmakers this week held a hearing on what听would’ve听been the strictest abortion ban in the country, allowing judges to send women who have abortions to prison,听and potentially restricting IVF听[in vitro fertilization]听and some forms of birth control.听Apparently,听that听bill went a little too far, even for some Republicans on the subcommittee. The bill听failed to听advance, at least for now. Are we likely to see more laws like this,听though,听as states try to top one another听in听pleasing what the anti-abortion forces want?听

Luthra:听I think we will. This is a听really long-standing听and deep debate in the state-based anti-abortion movement,听and in particular听the debates over contraception, the debates over IVF,听and especially around whether you send someone who gets an abortion to prison, whether听they’re听held criminally liable. And there is a very extreme movement;听they call themselves abortion abolitionists. They听are introducing听bills and growing numbers every year,听trying to听build up听support. Even some of the pretty conservative abortion opponents say,听Oh, those people are too extreme for me.听But听they’re听gaining influence. And I see this as a conversation and a debate that the anti-abortion movement only continues to have, especially as this is something that progresses on the state level and not necessarily the federal one.听

Winfield Cunningham:听I do wonder,听though,听how much more room there is for state bans, because you saw this huge surge in red states placing bans after听Dobbs听[Dobbs v. Jackson Women’s Health Organization].听At this point, I think around 17 or so states have听almost-complete听bans on abortion.听So听in a way,听I think听there’s听been a lot of work done there. And I think the opportunity that the anti-abortion folks see is at the federal level, but of course they’re running into top appointees听鈥斕齂ennedy, some of the others at HHS,听who,听for them,听this is really not a priority听鈥斕齛nd it doesn’t sound like anti-abortion folks would love to see them roll back access to mifepristone, for example.听I’m听not convinced听that’s听going to happen anytime soon because the folks pulling the levers there听aren’t听necessarily in the camp.听

Rovner:听Yeah,听apparently one听of the reasons that people听aren’t听angry with Marty Makary at FDA is because he appears to be听slow-walking听this mifepristone study,听and he approved, even though听he had to, another generic of the medication. So,听I know that that’s also part of this.听

Luthra:听If I can add one more thing, Julie?听

Rovner:听Yes, please.听

Luthra:听Frankly, a听really good听litmus test听for where states are heading is coming in only a few weeks when Texas’听new abortion law takes effect.听And this is one of the most ambitious efforts to stop telehealth and shield听law听provision of abortion. And this is an area where state-based abortion opponents are very听frustrated,听because听they see it as breaking or fundamentally incapacitating their abortion bans when people can still get medication through the mail from doctors who have not been successfully prosecuted for doing so. And so,听when this law takes effect, it enables civil lawsuits against people who make medication abortion available in Texas. I think we will see:听Are there civil suits filed by abortion opponents, for听instance.听Is there any really concerted effort to use this new tool to stop telehealth? And if so, does that spread to other states? Especially since Texas has for so long been a real pioneer in abortion restrictions and making听it听even harder to get.听

Rovner:听Yeah, where Texas goes, so听go听the rest of the red states.听

All right, that is all the time we have for the news this week. Now we will play my interview with Republican health expert Avik Roy, and then we will come back and do our extra credits.听

I am so pleased to听welcome to听the podcast Avik Roy here in person in our studio at 麻豆女优. Avik is co-founder and听chairman听of the Foundation for Research on Equal Opportunity, which studies and recommends social policies for the half of the population that earns less than the U.S.听median. But听he’s听also a longtime health policy wonk and health adviser to Republicans,听including several Republican presidential candidates over the years. And full听disclosure,听he is, like me, a fellow Michigan Wolverines fan.听

Avik Roy:听Go,听Blue.听

Rovner:听Avik, welcome to听“What the Health?”听

Roy:听Great to see you, Julie.听

Rovner:听So,听how did you come to health policy? It was a bit of a听winding听road, wasn’t it?听

Roy:听Yeah, I听kind of fell听into it.听I was working as a health听care investor,听actually,听at听Bain Capital听and听a couple听of听other places like that,听as a health听care investor.听In 2008,听[Barack]听Obama gets听elected听and starts to talk about what we now call the Affordable Care Act,听or Obamacare. And I听wasn’t听reading anything I agreed with. At that time, you had Ezra Klein,听then at听The Washington Post, and you had Jonathan Cohn at听The New Republic. You had that group of young bloggers who are writing,听Hey,听there’s听this brilliant MIT economist named Jonathan Gruber,听and听he’s听got it all figured out,听and听everything’s听going to work great,听and premiums are going to go down.听And Obama himself promised that premiums for the average family of four would decline by $2,500 per year.听That’s听what he campaigned听on听in 2008. Then on the conservative side, you had a lot of people writing things like,听It’s听big听government.听It’s听unconstitutional.听It’s听welfare.听

And I found these arguments听kind of like听empty calories,听because for the average American听who’s听struggling to afford health insurance and health听care, I just听don’t听see how that person is going to respond to that kind of argument.听They’re听going to be like,听Look, if one side is telling me听they’re听going to reduce my premiums by $2,500 per family per year, and the other side is just saying, ignore this all because听it’s听big government, which side is the average听person听going to choose?听They’re听going to choose a side听that’s听going to try to reduce their health听care bills. And my point of view was not aligned with either of those positions. My point of view was actually:听Health听care bills are going to continue to increase,听and the design of the ACA has听a number of听flaws that are not being called out because the conservative critics just听weren’t听digging into the technical design听鈥斕齮he architecture of the bill.听And even though听I’m听not as eminent as Jonathan Gruber, I did go to MIT. And听so听I听maybe听felt a little more willing to engage in that debate.听

Rovner:听And听you’re听a doctor.听

Roy:听Well, I went to med school.听I never practiced,听don’t听have a license.听

Rovner:听But you have,听at least,听the medical听education.听So听you have a good听bit of background听in this. I want to think broadly. Every other developed country has some sort of national health insurance scheme. Most of them are hybrids of public and听private. Some of them听more听public;听some of them听more听private. Why hasn’t the U.S.听been able to solve this problem that every other developed country has?听

Roy:听We听actually do听a lot of work on this at the听Foundation for听Research on听Equal听Opportunity.听We have a whole annual research product we put out called the World Index of Healthcare Innovation, where we compare 32 countries around the world with the highest GDP听[gross domestic product]听per capita that have a population over 5 million on quality, choice, science and technology, and fiscal sustainability. So,听a number of听other people听do听these kinds of comparisons, but our听study is听different for two reasons. One, we听don’t听just look at OECD听[Organization for Economic Co-operation and Development]听countries, which is typically where most academics get their data. We look at countries that are outside the OECD, particularly in Asia. And we also again score countries not merely on health outcomes and equity-type measures, but we also look at things like fiscal sustainability, which we think听matters for听long-term equity,听and science and technology. One of the defenses of the American system that you always hear is,听Well, yes, our system is so expensive, but听we’re听also the innovation center of the world,听and you听can’t听have one without the other.听

So,听one thing that we wanted to study was:听Is that听really true?听Can you have innovation at a U.S.-like level but with a universal system that covers everybody and has听good quality? And the system that has ranked听No. 1听in our study every year is Switzerland. The reason听that’s听really interesting听is because听there’s听a misconception,听both on the left听and听the right,听that to achieve universal health insurance you听have to听have a single-payer system.听And that’s not actually true.听There are plenty of countries听鈥斕齮hey听are a minority of the industrialized countries, but听it’s听a robust and significant minority听鈥斕齮hat have achieved universal coverage using private insurance, not necessarily a single-payer,听government-run insurer. And Switzerland is, in our view, the best example of that because Switzerland is a place where听there’s听an innovative pharmaceutical and biotech,听and med devices ecosystem. They have universal coverage.听It’s听basically like听Medicare Advantage for all,听or Obamacare for all.听It’s听a universal individual market where the market is regulated and subsidized, but it works.听

Rovner:听I would say big subsidies.听I’ve听been to Switzerland.听I’ve听studied the Swiss health听care system.听

Roy:听Big subsidies.听It depends on your听vantage point.听Relative听to the American system, the subsidies are听actually quite听low.听So听what Switzerland spends subsidizing health听care is about 45% of what the U.S.听spends per capita subsidizing health听care. We听actually subsidize听health听care per capita more than any other country in the听world,听because听the cost of health听care is so high in America that the cost of subsidizing health听care听is听so high.听

Rovner:听Which was going to be my second point about Switzerland听is听that听it’s听way more regulated than a lot of Republicans think.听

Roy:听Well,听it’s听about as regulated as Medicare Advantage,听or the ACA plans in terms of the insurance plan to sign. There are other things听鈥斕齛nd we听don’t听have to spend听all of听our time on Switzerland here听鈥斕齜ut you ask the question,听it’s听like,听Why听can’t we do this in America?听That was your original question,听and there’s听a number of听reasons for that.听One is path dependence. With any health听care system, once听you’ve听established听it,听it’s听hard to change. The one thing听I’ll听say that we did in the mid-20th century that really put us on this path was when we听excluded from听taxation听employer-sponsored听insurance,听because in World War II there were wage and price controls. Employers figured out how to get around that by offering employer-sponsored insurance that听wasn’t听regulated by wage and price controls. And then after the war,听[Dwight D.]听Eisenhower said,听Yeah,听let’s听not tax those insurance policies because they听seem to be听important for people.听

And听it was听kind of an听offhanded听decision. No one really knew that that was going to be this听big thing. But sure enough听鈥斕�80 years later,听or 70 years later听鈥斕齢ere we are. And I would argue听that’s听the biggest听driver of health听care inflation, because we听don’t听merely have third-party payment for health听care. Every country has third-party听payment听for health听care. But we have third-party payment of third-party payment of health听care. We have ninth-party payment of health听care basically. And no wonder that no one has any sense of why everything is so expensive. But听that’s听the core driver.听And unfortunately,听Medicare,听in particular,听built听on that system.听When the Medicare law was passed in 1965, a key element of Medicare was to build upon and drive the benefits based on the traditional Blue Cross employer-based plan, which had by that point already ballooned into something resembling what we have now.听

Rovner:听So why has health听care been such a low priority for Republicans? I always hear,听Well, Republicans听don’t听really work on this because听it’s听not important to their voters.听That听can’t听possibly be听true anymore.听

Roy:听I think everything you said is听just right. I think that historically,听Republicans听didn’t听feel that it was relevant to their voters. And their voters听weren’t听really pushing for it because their voters were听鈥斕齬elative听to the median constituent听鈥斕齪erhaps more听likely to be employed,听or more likely to be on Medicare听鈥斕齛nd therefore听didn’t听feel like they had to worry about affordability. But affordability, as everybody at 麻豆女优 knows, and the audience that listens to your program knows, affordability听is a big deal听for everyone. Premiums in the employer-sponsored market have gone up, and people听don’t听necessarily notice that.听But they notice that their paychecks have been flat. They notice their deductibles going up,听and their copays going up,听and听that’s听been a big problem both in the ACA markets,听and the employer market.听

But affordability听is a big deal. And now that the Trump GOP has become more of a working听man and woman’s party听鈥� and you see it in all the exit polls that if you actually look at who’s voting for Democrats and who’s voting听for听Republicans in presidential election years听鈥斕齮he Republican electorate is now a bit more lower-income than the Democratic constituency, which has a lot more of those college grads,听and grad school grads. I think听you’re听starting to see more of that听populist听concern about the affordability of health听care, but听there’s听still an enormous amount of intellectual catch-up to get there. And I think because of this experience of studying the international health听care world,听I’ve听been much more optimistic about the ability to achieve universal coverage in a way听that’s听friendly to free marketeers, people who believe in private-sector competition.听

Whereas I think the traditional Republican view, which you听kind of alluded听to earlier听鈥斕齛nd I ran into this a lot in the 2017 repeal-and-replace debate听鈥斕齱as听it’s听not the federal government’s job to ensure that everybody has affordable health insurance.听That’s听what I heard from a lot of the kind of old-line Republicans and Republican staffers in the 2010s.听It’s听not the federal government’s job to guarantee affordable health insurance for people.听That听should be up to ordinary people to make enough money to afford health insurance. And I disagree with that very strongly. And the reason I disagree with that very strongly is because it was the federal government that screwed it up in the first place. It was the tax exclusion for employer-sponsored insurance, and then some of the things around the design of Medicare that drive all the health听care inflation that听we’ve听seen over the last 80 years.听

So听the federal government created the mess, and it is the federal government’s job to clean up the mess. And I guess you could say a big purpose of my work is to try to convince more Republicans to agree with me on that.听

Rovner:听So why has it been so hard for Republicans to come together on anything? The Democrats have big divisions,听too,听on health听care. They have听a big chunk听of Democrats who would like听“Medicare for听All,”听and another chunk of Democrats who would like to build on the existing system. Republicans听presumably have听the same kinds of divisions,听just in the other direction, and yet we almost never see Republican proposals,听and we do see听Democratic proposals.听

Roy:听Well, I will quibble with you a little bit, Julie, in that there are Republican proposals. They听don’t听always get the same amount of media coverage that the Democratic proposals get. There is a bill听that’s听been introduced in both the House and the Senate,听based on our work at FREOPP,听called the Fair Care听Act, which would achieve voluntary universal coverage. It听wouldn’t听force anyone to buy coverage, but everyone who wants to buy health insurance would be guaranteed to have an affordable听option.听It would reduce the deficit, increase coverage by about听9听to 10 million,听and also听reduce federal spending.听It would reduce taxes,听and reduce federal spending,听because it would reduce the underlying cost of health听care.听

Rovner:听How?听

Roy:听By,听in particular,听tackling听the power of hospital monopolies,听and being more aggressive about high drug prices.听And it would also听means-test the subsidies. And by means-testing,听I听don’t听just mean means-testing Medicare, which is often what people talk about, but also means-testing the employer tax break for health insurance, for example, and really having听鈥斕�

Rovner:听So more like Switzerland.听

Roy:听Exactly.听So听all these random digressions that听I’ve听been coming听鈥μ齮here is听actually a听coherent idea here that听I’m听trying to get to, and I thank you for reminding me on that.听

Rovner:听Well,听we’re听back in听the thick听of it. Avik Roy,听hope听we can have you back again.听

Roy:听Thanks, Julie.听I’d听love it.听

Rovner:听OK.听We’re听back.听It’s听time for our听extra-credit听segment.听That’s听where we each recognize听a听story we read this听week听we think you should read,听too.听Don’t听worry if you miss it. We听will听put the links in our show notes on your phone or other mobile device. Paige, why don’t you听go听first this week?听

Winfield Cunningham:听Sure.听Yeah. Well, I was really struck by this story in听The Wall Street Journal called听“.”听And this was just a really, really intensive look at some of the struggles faced by Medicaid patients when they go to their plan, they look up doctors, they try to get appointments, but it turns out that a lot of the doctors listed in the directories for these Medicaid plans don’t see patients anymore,听or they’re far away.听And there’s a real mismatch here between the providers’听insurer networks’听claim to offer and what is听actually available听to people.听And of course, a lot of Medicaid patients live in medically underserved areas.听So听I just thought this article, they had听actually looked听at some patients that live near St. Louis, my hometown, and how difficult it was for them to find听a timely听appointment with a specialist. I just thought it was a听really good,听intensive look at some of the听real challenges听here in the Medicaid program.听

Rovner:听Yeah, provider directories are听sort of an听underappreciated huge problem in the entire health听care system. Joanne?听

Kenen:听This is a piece from ProPublica,听听by Nat Lash,听with pretty cool graphics by Chris Alcantara.听And basically,听they’re听arguing that the USDA听[United States Department of Agriculture]听for three and others prior to Trump听鈥斕齣t’s听not just a Trump administration policy听鈥斕齢as been emphasizing sanitation,听and what they call biosecurity practices to stop bird flu entering. They blame听it on听sort of bad听control,听like the farms听let听bad stuff听in.听And in fact,听there’s听increasing evidence听鈥斕齛nd ProPublica worked with researchers and experts on climate and wind patterns听and everything听鈥斕齮hat听it’s听airborne.听That听it’s听coming in on wind and dust.听That听it’s听not just听what’s听tracked on the floor.听It’s听on the feathers. And that the whole approach is therefore inadequate. And听also听the USDA has refused to do vaccination, which many European countries are doing.听So听the combination of underemphasizing the role of wind and air current,听and the reluctance has to do with import policies and the economy of poultry and eggs,听is really putting us at greater risk.听

Rovner:听Yeah, very scary story. Shefali?听

Luthra:听My piece is from ProPublica. It is by Kavitha听Surana听and Lizzie Presser. It is called听听The听story really wrecked me.听It’s听really important听journalism.听It is a story about one woman,听in particular, but听then gets into the fact that there are many cases like this of people who are pregnant, have medical conditions that make their pregnancy听very high听risk.听So听their health is threatened but not their lives. And as such, they听don’t听qualify for an exception under an abortion ban like听Texas’.听And the woman in this story, Tierra听Walker, died. She already had a kid who now does not have his mom because she听couldn’t听get听an abortion.听

And I think what this story really gets at is a few important things.听One is that the exceptions that states have passed don’t account for the fact that pregnancy can make your health really at risk, even if there’s not something听really dramatic听like sepsis.听It is just simply all the other things that make you at greater risk of dying.听The other thing that’s听really important听is that all these doctors who treated her never suggested an abortion.听That’s important because it underscores that years later,听there听is still a lot of fear for health听care providers operating in these听states听that听is听very obvious听that being pregnant was a risk for this patient. And there was a conversation that she could have had with her medical provider, a choice that she and her family could have made about her circumstances and what was best for her.听Doctors听didn’t听feel safe having that conversation because of state laws. And now听she’s听dead.听

Rovner:听And听yeah, this is a continuation of a ProPublica series that won a Pulitzer this year.听So听they’ve听been tracking this through several states and lots of patients, unfortunately.听

All right, my extra credit this week is from CNBC.听It’s听by Scott听Zamost, Paige Tortorelli, and Melissa Lee. It’s called听听and it’s a lovely take on how the U.S.听health system has become such a mess that employers can now hire third-party companies who pay for patients to take all-expense paid trips to听the Bahamas or the Cayman Islands to buy expensive prescription drugs at a price that still saves enough money from what’s charged in the U.S.听to pay for the trip.听There’s听just one catch,听though. While听it’s听not illegal to go to another country to get your own medication, some of these third parties also import drugs themselves, and that听is听illegal. For the umpteenth time, if the U.S regulated drug prices the way all these other countries do, drugs here would be a lot less expensive. Although I will say,听I have been to both听the Bahamas and to the Caymans, and they are both lovely.听

OK, that is this week’s show. Thanks as always to our editor, Emmarie Huetteman,听and our producer-engineer,听Francis Ying. A reminder,听“What the Health?”听is now available on WAMU platforms, the NPR听app, and wherever you get your podcasts,听as well听as, of course,听kffhealthnews.org. Also, as always, you can email听us听your comments or questions.听We’re听at听whatthehealth@kff.org. Or you can find me on听X听, or听on Bluesky听. Where are听you guys听hanging around these days? Shefali?听

Luthra:听I’m听on Bluesky听.听

Rovner:听Paige?听

Winfield Cunningham:听I am on X听.听

Rovner:听Joanne?听

Kenen:听I’m听either at听听or听听@JoanneKenen.听

Rovner:听We’ll听be back in your听feed听early next week for the Thanksgiving holiday. Until then, be healthy.听

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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 麻豆女优 Health News, Paige Winfield Cunningham of The Washington Post, Maya Goldman of Axios, and Alice Miranda Ollstein of Politico.

Panelists

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:听

Julie Rovner: 麻豆女优 Health News’ “Many Fear Federal Loan Caps Will Deter Aspiring Doctors and Worsen MD Shortage,” by Bernard J. Wolfson.

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

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

Maya Goldman: 麻豆女优 Health News’ “As Sports Betting Explodes, States Try To Set Limits To Stop Gambling Addiction,” by Karen Brown, New England Public Media.

Also mentioned in this week’s podcast:

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

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

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

Alice Miranda Ollstein: Hello.听

Rovner: Maya Goldman of Axios News.听

Maya Goldman: Good to be here.听

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

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

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

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

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

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

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

Goldman: Exactly. Exactly.听

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

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

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

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

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

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

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

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

Winfield Cunningham: Under the enhanced. OK.听

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

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

Rovner: 400%.听

Winfield Cunningham: Right. Yeah. Yeah.听

Rovner: That’s right.听

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

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

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

Winfield Cunningham: This is very true.听

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

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

Rovner: Yeah. Although it is 鈥μ�

Goldman: Obviously, that’s a lot of what ifs, but 鈥μ�

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ollstein: Exactly.听

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ollstein: Definitely.听

Rovner: Paige?听

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

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

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

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

Rovner: Alice?听

Ollstein: on Bluesky and on X.听听

Rovner: Paige?听

Winfield Cunningham: I am still on X.听

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

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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.

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At the start of this month, people close to the MAHA movement suggested that Kennedy’s upcoming autism announcement would link Tylenol use during pregnancy with the condition. Researchers worried it would veer into vaccines. Both Kennedy and Trump have about an association between vaccines and autism in the past, despite many .听

Ann Bauer at the University of Massachusetts-Lowell, an epidemiologist who co-wrote a recent analysis about Tylenol and autism, told me, “I was sick to my stomach,” worrying that Kennedy would distort her team’s conclusions. She also feared scientists would reject her team’s measured concerns about Tylenol in a backlash against politicized or misleading remarks.听

Bauer and her colleagues had on Tylenol, autism, and attention-deficit/hyperactivity disorder. Many found no link, while some suggested Tylenol might occasionally exacerbate other potential causes of autism, such as genetics.听

Since Tylenol is the only safe painkiller for use during pregnancy and fevers during pregnancy can be agonizing as well as dangerous, the team suggested judicious use of the medicine until the science was settled.听

That’s not what Trump advised. “Don’t take Tylenol,” he said. “Don’t give Tylenol to the baby. When the baby’s born, they throw it at you. Here, throw, give him a couple of Tylenol. They give him a shot. They give him a vaccine. And every time they give him a vaccine, they’re throwing Tylenol. And some of these babies, they, you know, they, they’re long born, and all of a sudden, they’re gone.”听

In emailed statements, HHS and White House spokespeople said Trump is using “gold-standard science” to address rising autism rates.听

Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University, called Trump’s comments dangerous. Centers for Disease Control and Prevention scientists told me they were never asked to brief Kennedy or the White House on autism, or to review the recommendations. Had researchers been asked, they would have explained that no single drug, chemical, or other environmental factor is strongly linked to the developmental disorder.听

Quick fixes 鈥� the kind promised by Kennedy 鈥� won’t make a dent, Tager-Flusberg said. “We know genetics is the most significant risk factor,” she said, “but you can’t blame Big Pharma for genetics, and you can’t build a political movement on genetics research and ride to victory.”听

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

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

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

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

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

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

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

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

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

The Science of Cerebral Folate Deficiency

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

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

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

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

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

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

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

Mason’s 鈥楲ittle Bottle of Hope’

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

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

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

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

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

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

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

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

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

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

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

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

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

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