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MAHA’s Treatments for Autism: Camel’s Milk, Stem Cell Injections — And Spelling Therapy

Arthur Allen — Mon, 08 Jun 2026 09:00:00 +0000

Elizabeth Bonker is a silent woman with a loud mission. She wants government agencies to cover the costs of training people with autism in a form of communication called assisted spelling. One problem: Leading professional organizations don’t believe it works.

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

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

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

Supporters say assisted spelling has improved the lives of thousands of people with autism, such as Bonker, and they have powerful allies. Kennedy appointed Bonker and another autistic “speller,” as they call themselves, to a 20-member autism panel made up largely of parents with children whose autism they attribute to vaccinations.

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

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

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

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

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

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

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

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

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

A Patchwork of Perspectives

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

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

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

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

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

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

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

Noah Simmons has spent two years learning to spell and type. At a climbing center in Gaithersburg, Maryland, he communicated with the aid of his mother, Tracy Simmons, who is holding a laminated sheet with the alphabet. (Arthur Allen/�鶹Ů�� Health News)

Noah Simmons glides down the rope at a climbing center. He high-fived his instructor and then beamed as he spelled out, “Im going to crush it again!” (Arthur Allen/�鶹Ů�� Health News)

Noah the Speller

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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By September, Nearly a Third of Americans Will Live in States With Legal Aid in Dying

Paula Span — Mon, 08 Jun 2026 09:00:00 +0000

Jules Netherland traveled from her home in the Bronx to the New York state Capitol in Albany several times in the past few years, hoping to persuade the legislature to pass a medical aid in dying bill, allowing terminally ill patients to end their lives with a lethal prescription.

She spoke at rallies. With other members of the advocacy organization Compassion & Choices, she visited legislators’ offices. In 2024, as the state Assembly was debating the aid in dying bill, she helped unfurl a banner in the chamber gallery that read, “Stop the Suffering.”

Her activism was becoming difficult. Netherland, who is 59 and works for a nonprofit, was diagnosed with breast cancer in 2019. “I did a full year of aggressive treatment,” she said. “Chemotherapy. A mastectomy. Radiation treatment every weekday for five weeks. Six months of two oral medications.”

She recovered and felt well until the cancer returned a few years later. Although metastatic breast cancer is incurable, drugs are keeping her disease at bay for now. Netherland feels fortunate but also fatigued, and she contends with brain fog, gastrointestinal symptoms, and joint pain.

“My energy is really limited,” she said.

As she emailed and called legislators, Netherland feared she might die before the aid in dying bill — first introduced in New York in 2016 — could become law.

‘A Breakthrough Moment’

On June 9, 2025, after the Assembly approved the bill, Netherland was in the state Senate chamber, watching the aye votes mount, and seeing it pass. an amended version in February; it is scheduled to take effect Aug. 5.

A similar law is in September in Illinois, which would become the (plus the District of Columbia) where medical aid in dying is legal.

“A breakthrough moment,” said Kevin Díaz, president of Compassion & Choices, which has spearheaded the long campaign for such laws. After almost 30 years — Oregon’s law, the first in the country, was enacted in 1997 — the addition of two populous states means that almost a third of Americans will live in one where medical aid in dying is legally available. “It shows that there’s broad support for this model,” Díaz said.

Polls consistently back that claim. A last spring found that almost two-thirds of respondents didn’t consider the practice “morally wrong,” either because they thought it was acceptable or not a moral issue. Support crossed many political and religious lines: A narrow majority of Republicans and 76% of Democrats both found “physician-assisted death” (also sometimes called “physician-assisted suicide”) permissible; so did most Catholics, Jews, and nonevangelical white Protestants.

In New York, that 54% of respondents supported aid in dying, including majorities of men and women, of all age groups, and of city, suburban, and upstate residents. A plurality of Latinos supported it; Black respondents narrowly opposed it.

Passing these laws has grown somewhat easier, said Thaddeus Pope, a bioethicist and professor at Mitchell Hamline School of Law in St. Paul, Minnesota, who tracks such policies. “You can say, ‘We have 10 years in California, 18 years in Washington, and 29 years in Oregon, and nothing bad has happened.’ It becomes more accepted.”

‘You Need A, B, and C’

Yet legalizing medical aid in dying, or MAID, has been and remains a long, contentious process. Catholic leadership and many disability organizations staunchly oppose it. (Pope Leo XIV personally not to sign the bill.)

The American Medical Association says that “physician-assisted suicide is fundamentally incompatible with the physician’s role as healer” and poses “serious societal risks,” although a number of state medical organizations have opted to remain neutral or, as in New York, to .

The Patients’ Rights Action Fund, through a sister organization, has lawsuits pending or on appeal in California, Delaware, and Colorado, arguing that aid in dying laws discriminate against people with disabilities by steering them toward physician-assisted suicide instead of treatment.

“This is a litigation strategy we’ve developed to ultimately get to the Supreme Court,” said Matt Vallière, the group’s executive director, who declined to say whether it would sue to block the Illinois and New York laws.

Even when aid in dying laws succeed, using them can prove challenging. In every state (except Montana, where it became legal through a court decision, so there is no statute governing eligibility), aid in dying is available only to people with incurable illnesses who are expected to die within six months.

It typically involves oral and written requests to two doctors, with mandated waiting periods between requests. Patients must have the mental capacity to make the decision, which disqualifies those with dementia, and they must ingest the medication without assistance. (An amendment Hochul insisted on adds a psychologist or psychiatrist to the process.)

All but two states require patients to be residents. Oregon and Vermont scrapped their residency requirements brought by Compassion & Choices. ( a .)

Moreover, any doctor, hospital, or healthcare system can legally decline to provide aid in dying, and religiously affiliated institutions often opt out. Those that participate can add their own requirements.

“The state can say ‘You need A, B, and C,’ and Columbia-Presbyterian can say, ‘We also want D, E, and F,’” said Pope, the Minnesota bioethicist.

Hotly Debated, Seldom Used

Perhaps these restrictions, or a lack of public awareness, help explain why, despite the headlines and fervent debates, the number of people who actually use the law is tiny in every state — usually 1% or fewer of the deaths recorded annually. The support for giving patients this kind of autonomy at the end of life remains widespread, but the desire to personally exercise it apparently is not.

Still, after studies showed that many patients seeking MAID were dying , the trend has been to loosen restrictions. California cut its 15-day waiting period to 48 hours; New Mexico allows physician assistants and advanced-practice nurses to write prescriptions along with doctors.

“Most states have now amended their laws two or three times,” Pope said. “We have liberalized.” Telehealth can also facilitate access to participating doctors.

Compassion & Choices is planning legal challenges to end residency requirements in additional states, Díaz said. It is also considering how to “make inroads in jurisdictions with a much different cultural and political environment,” he added, mentioning Florida and other Southern states.

Medical aid in dying represents a shift in power, Díaz said. “The person who has to bear the burden of the suffering should have the ability to decide when it’s enough,” he added.

Anne Gurnett Bander, 72, a retired research scientist in Carmel, New York, cared for her husband for four years as ALS — the relentlessly disabling neurological disorder also known as Lou Gehrig’s disease — rendered him bedridden and dependent on feeding and breathing tubes. “By the time he died, the only thing he could do was nod his head,” she recalled.

So being diagnosed with ALS herself last year was “my worst possible nightmare,” Gurnett Bander said. She was planning to fly to Switzerland, where the nonprofit organization Dignitas provides medical aid in dying, when she learned about the New York bill and began speaking publicly in support of it, her voice faltering as her illness advanced.

Gurnett Bander and Netherland say they’re not certain they’ll use lethal drugs to end their lives as their symptoms intensify. Not infrequently, patients complete the necessary steps, secure the prescribed medication, decide they don’t need it after all, and die of their diseases. But both women insist that the choice should be theirs.

“It can offer so much peace of mind,” Netherland said. “I thought, ‘People should have this option.’ Now, they will.”

The New Old Age is produced through a partnership with .

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Gounder Fills In Details Behind Ebola, GLP-1, and Trump Headlines

Sat, 06 Jun 2026 09:00:00 +0000

Céline Gounder, �鶹Ů�� Health News’ editor-at-large for public health, discussed a recent study that suggests ultraprocessed foods are linked to increased dementia risk on CBS News 24/7’s The Daily Report on June 3. Gounder also discussed the Ebola outbreak in central Africa and the impact of U.S. health funding cuts on CBS News’ CBS Mornings on June 3.

On June 2, Gounder joined CBS News’ CBS Mornings to discuss a study that found women taking GLP-1 drugs had a lower rate of breast cancer diagnoses. She also discussed President Donald Trump’s new medical report and creatine supplements on CBS News 24/7’s Mornings and CBS News’ CBS Mornings, respectively, on June 1.

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Untreated Cancer, Festering Infections: Immigrant Detainees Detail Medical Care Lapses

Rae Ellen Bichell — Fri, 05 Jun 2026 18:30:00 +0000

As the current federal administration rounded up an increasing number of immigrants, with U.S. Immigration and Customs Enforcement holding more than 75,000 in mid-January alone, we heard scattered, localized complaints from detainees alleging medical neglect. We wondered about the extent of the problems and whether the agency and its contractors were keeping pace with detainees’ medical needs nationwide. But no central repository exists, so we had to get creative — and dive into a trove of court records.

Detainees are filing record numbers of habeas corpus petitions in federal court, arguing they’re being held illegally. Sometimes those cases mention medical conditions. But a federal rule makes immigration filings tricky to obtain because they’re usually available only in person at the court where they were filed. The nation has 94 of those courts.

However, a nonprofit collecting such records through a national network of volunteers gave us documents from thousands of those court cases dating to last January. We teamed up with The Associated Press to dive into them.

In analyzing those files, we found that hundreds of detainees in at least 33 states told courts they’d received inadequate medical care. They said that they didn’t get their medications on time — or at all — for everything from diabetes to Parkinson’s to HIV. They told courts their requests for medical help had gone unanswered for weeks, that their blood sugars rose, infections festered, and cancers went untreated. Some said they had collapsed and had seizures.

Court filings described how one man had a stroke while on a video call with his daughter and lost his ability to speak for several days. Records show he hadn’t been getting all his medications while detained. Another detainee described standing by the door each day waiting for the eye drops he needed to maintain his waning vision, as he worried whether he would be able to see his infant child grow up. Even after being released, a father of six U.S. citizens told us he feared he wouldn’t be able to support them because of lingering pain in his leg — the leg a doctor told him came close to needing amputation when an infection in ICE custody went untreated until he passed out and was hospitalized.

Such allegations spanned facilities of all types, from county jails to sites like “Alligator Alcatraz,” as the Department of Homeland Security gutted the office in charge of oversight.

�鶹Ů�� Health News and AP asked the agency to respond to our findings, but it did not provide comment. DHS acting Chief Medical Officer Sean Conley has previously said, “It is both policy and longstanding practice for aliens to receive timely and appropriate medical care from the moment they enter ICE custody.”

Detainees’ families said they feel helpless watching their loved ones deteriorate while in custody and hope they don’t join the rising death toll, which has reached 51 since the start of President Donald Trump’s second administration.

Festering Infections to Untreated Cancer: ICE Detainees Describe Medical Neglect Across US

Immigrant detainees have told courts across the nation that detention officials have failed to treat or stabilize their conditions, from pregnancy to prostate cancer, suggesting that systemic lapses in care extend well beyond record deaths in Immigration and Customs Enforcement custody.

By Rae Ellen Bichell, Claire Galofaro, The Associated Press, Maia Rosenfeld, Renuka Rayasam, Aaron Kessler, The Associated Press, and Byron Tau, The Associated Press June 2, 2026

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Millions of Kids Could Lose Insurance as GOP Healthcare Cuts Start To Bite

Julie Rovner — Fri, 05 Jun 2026 09:00:00 +0000

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have lost insurance since President Donald Trump took office in 2025. Another million could lose it amid the Trump administration’s immigration crackdown and new Medicaid eligibility rules. On WAMU’s Health Hub on June 3, �鶹Ů�� Health News chief Washington correspondent Julie Rovner explained how fear and confusion complicate access to health coverage.

(Stefani Reynolds/Bloomberg via Getty Images)

Last year’s big cuts to federal healthcare programs in the Republicans’ One Big Beautiful Bill Act created an affordability crunch for many Americans. They’ve ushered in higher health insurance premiums and confusion about who’s covered under new Medicaid rules.

Another result has been falling enrollment in Affordable Care Act plans and Medicaid. That’s leaving uninsured, according to an analysis by the Georgetown University McCourt School of Public Policy’s Center for Children and Families. �鶹Ů�� Health News chief Washington correspondent Julie Rovner appeared June 3 on WAMU’s Health Hub to explain who’s vulnerable to losing coverage and what it all could mean for the prices Americans pay for health insurance next year.

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Upcoming Billing Change Could Make Pregnancy Pricier

Michelle Andrews — Fri, 05 Jun 2026 09:00:00 +0000

Having a baby in the United States is about to get more complicated.

Under new billing codes that take effect in January, doctors who manage maternity care will start charging à la carte for visits and services related to pregnancy, childbirth, and postpartum care. It’s an about-face from recent years, when doctors have often received a single “bundled” payment for maternity care they provided. Although OB-GYNs strongly and have pushed for it for years, some patient advocates and employers say it’s an open question whether the new system will result in better care or increased patient costs.

The American College of Obstetricians & Gynecologists says the change is crucial to accurately reflect the care OB-GYNs currently provide, with expectant patients — some older and sicker than in decades past — more likely to have complex medical and social needs and receive care in multiple settings from multiple practitioners.

For example, under current bundled obstetrics coding, the number of prenatal visits is set at a fairly arbitrary 13, “which is not really what most people need,” said , chair of the Department of Obstetrics and Gynecology at the University of New Mexico and a member of the ACOG committee that developed the new codes in conjunction with the .

The new fee-for-service codes will better accommodate more or fewer visits, either in person or remotely, based on individual needs.

Under the current system, “if someone comes in for a birth, no matter how long or how short their labor or how complicated or uncomplicated their delivery, the global reporting is the same because we only have one code,” Hofler said.

The new, more precise codes will help the growing number of medical professionals who may play a role in maternity care — such as midwives, hospitalists focused on labor and delivery, and maternal-fetal medicine specialists — to account for, and get paid for, the range of services they provide.

For patients, however, especially the growing number with high-deductible health plans, the new system may result in higher out-of-pocket bills, some maternity experts say.

“The cost piece is really critical,” said , an OB-GYN and the senior vice president for the Achieving Equitable Outcomes initiative at The Commonwealth Fund, a health research nonprofit. “There will be more line items. Will that be passed along to patients, particularly those that are in commercial plans, in high-deductible plans?”

Whether families will pay more out-of-pocket “really comes down to how payers choose to implement these codes,” Zephyrin said.

Insurance industry representatives said they are concerned with the implementation timeline, which will require significant operational changes.

“Rushed implementation of far-reaching AMA code restructuring will fundamentally change how maternity services are managed and reimbursed,” said Chris Bond, a spokesperson for AHIP, which represents insurers. Under federal law, providers and health plans for diagnoses, procedures, services, and supplies. Doctors and other health professionals bill for their services using Current Procedural Terminology codes, which are developed and maintained by the , the main trade group for doctors. The federal Centers for Medicare & Medicaid Services reviews new and revised codes and reimburses clinicians based on a fee schedule, which is updated every year. The CMS review is going on now, and the proposed fee schedule for next year will be published in July.

“We don’t know” whether CMS will go along with the proposed coding changes, said Barbara Levy, vice chair of the AMA’s CPT Editorial Panel. “They were at the table as observers and had opportunities to give inputs throughout the entire process,” she said. In the meantime, the AMA is educating providers and payers about the new coding structure.

Federal law limits how much expectant parents can be charged in certain instances. Under the ACA, most health plans that is considered preventive at no cost to members. The list of preventive maternity services, set by the federal Health Resources and Services Administration, includes prenatal and postpartum visits and screening for diabetes, anxiety, and HIV, among other things.

The global bundle doesn’t cover everything, though, and pregnant people typically already pay some of the cost for certain services, such as ultrasounds, specialist visits, and lab work. They’re also responsible for their portion of labor and delivery professional fees based on their insurance plan (in addition to hospital charges, which are billed separately).

Still, , in which providers are paid à la carte based on the volume of services they provide rather than on health outcomes, has long troubled health policy experts because of its potential to incentivize providers to do more and pricier services. In fact, one of the reasons policymakers moved away from that arrangement for maternity care in recent years was because they believed had the potential to lower costs and improve quality, including reducing the roughly 30% of births in the United States done by cesarean section, which costs significantly more than vaginal birth. (It hasn’t worked. The proportion of births by C-section hasn’t budged under bundled payment.)

“I always worry about anything that is ‘piecemealing’ our healthcare system even more,” said Caitlin Donovan, a senior director at the Patient Advocate Foundation, a nonprofit that provides case management services for sick people in the U.S., of the return to fee-for-service billing.

Even under the current system, patients can get dinged for extra services they may not need. Donovan recalled that when she was 35 and pregnant with her third child, her obstetrician told her that as a “geriatric” expectant mother she needed weekly ultrasounds after her 20th week.

ACOG recommends a detailed first-trimester ultrasound for pregnant patients 35 or older or with known risk factors, according to spokesperson Jamila Vernon. “Subsequent ultrasounds are also based on findings and risk factors. In other words, there is no set number of ultrasounds for all patients,” Vernon said.

“There was nothing that indicated I needed those scans,” Donovan said. “It was just a money grab.”

With roughly babies born every year in the United States, childbirth is one of the most common medical events that people experience.

Still, having a baby isn’t cheap. It costs families with employer coverage , according to an analysis of data from 2021 to 2023 by researchers with the Peterson-�鶹Ů�� Health System Tracker.

About in the U.S. are covered by the federal-state Medicaid program for low-income people. These families don’t generally face out-of-pocket costs for maternity care, and the new billing system won’t affect them financially.

However, ACOG hopes that the new system will help doctors and other medical professionals improve maternity care, particularly after a baby is born.

With a bundled system, it’s often unclear what services were provided during the maternity process, hampering researchers’ ability to evaluate whether specific services move the needle on maternal mortality rates, in which the U.S. .

Maternity care experts are particularly interested in postpartum care. Forty-eight states and Washington, D.C., now provide a after childbirth, up from 60 days. Under the new codes, physicians will be paid to provide extended postpartum care, rather than the two visits that were recommended under bundled coding.

It’s important to track a number of medical issues after birth, including screening for depression, substance use, whether a pregnant mother’s gestational diabetes turned into diabetes, or whether cardiac changes returned to normal after birth, said , a Medicaid and maternal-child health expert who is president of Johnson Policy Consulting.

With the new codes, “you have that opportunity for ongoing care, and you have a way to finance it,” she said.

Experts who represent employers say they understand why ACOG has been pushing for these changes, but they are concerned that they will result in higher costs.

“ACOG is saying that obstetricians are being underpaid, and there’s probably some truth to that,” said Jeff Levin-Scherz, population health leader at WTW’s health management practice and an assistant professor at Harvard’s T.H. Chan School of Public Health.

Levin-Scherz noted reports of increasing visit intensity, reflecting the time and resources a doctor spends on a patient and resulting in higher payment. “It’s not likely that this new set of visit codes will be exempt from that,” he said. Even though patients may not be on the hook directly for the cost of prenatal and postpartum visits, to the extent that there are more visits and they’re coded at a higher level, “if their plan is paying more next year, their insurance premiums will go up more,” he said.

Magda Rusinowski, a vice president of the Business Group on Health, which represents midsize and large employers that self-fund employee health benefits, said she is concerned that the new system will encourage the use of additional and more frequent tests and more expensive providers rather than doulas, for example.

“Fee-for-service in every discipline incentivizes more tests and higher-level providers because that’s what generates higher billing,” she said.

Still, “it’s early days,” Rusinowski said. “Many in the industry are trying to think about how this will unfold.”

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‘We Live With Fear’: In Congo, Doctors Face Ebola With Little Protection

Amy Maxmen — Fri, 05 Jun 2026 09:00:00 +0000

Harrowing scenes are unfolding at health facilities at the epicenter of an Ebola outbreak in the Democratic Republic of Congo.

A 25-year-old midwife and a doctor in his early 30s are sick with Ebola symptoms, including fevers and severe joint pain, said their colleague Elisabeth Furaha, the medical director at in the northeastern province of Ituri.

They had cared for patients with similar symptoms in early May, before the outbreak was detected. One of the patients is now dead, Furaha said, and none of them has been tested for Ebola, even though samples were taken. The hospital still lacks access to tests, and an adequate supply of protective gowns and plastic masks to keep doctors and nurses safe.

“We live with fear in our stomachs,” Furaha said, speaking in French. “Every day, there are healthcare providers and patients dying.”

The outbreak took the world by surprise, with nearly 250 suspected Ebola cases and 80 deaths by the time Ebola was confirmed in Congo. Disturbed by the extent of silent transmission, and by cases in neighboring Uganda, the head of the World Health Organization sounded the group’s highest alarm on May 17, declaring the outbreak a “public health emergency of international concern.” That triggered donations from around the globe, of more than $162 million from the U.S. State Department to “stop the outbreak at its source and ensure Ebola does not reach the United States.”

But despite international attention, doctors in northeastern Congo say that many clinics lack even rudimentary supplies: gloves, protective gowns, masks, Ebola tests, and even clean water. Without rapid action to bolster those on the front line, researchers say, the outbreak will grow exponentially, costing even more money and risking lives far beyond Congo.

“All signs point to this becoming the biggest outbreak we’ve ever seen in the DRC,” said Nahid Bhadelia, the director of Boston University’s Center on Emerging Infectious Diseases. “That could lead to regional instability, and that has repercussions for the world.”

Some supplies from the country’s Ministry of Health, the WHO, and other United Nations agencies have landed in northeastern Congo, but not nearly enough to stock hundreds of health facilities where Ebola patients may seek care. Furaha has spent her own money on gloves, masks, and a tarp to build a makeshift tent to isolate patients with Ebola symptoms from the rest of the hospital. But she said it’s “inhumane” to put patients there before she can afford a mattress for them to rest on, or reliable access to tests.

Without testing, patients who turn out to have Ebola can infect those who don’t. Malaria and other diseases have initial symptoms similar to Ebola, causing fevers, soreness, and gastrointestinal problems.

Aid workers say shipments of medical supplies have been delayed by logistical hurdles, such as suspended flights within Congo and between Congo and neighboring countries.

“We need flights to move a lot of things, so this is a big challenge,” said Chikwe Ihekweazu, executive director of the WHO Health Emergencies Program. Small planes used in humanitarian crises have been permitted to move, but Ihekweazu said those are insufficient, expensive, and unsustainable.

Moving between remote clinics can be an impossible task because roads are often badly eroded or blocked by armed groups, said Rafaramalala Volanarisoa, a doctor with Catholic Relief Services in Kinshasa, Congo’s capital. Conflict, combined with the Trump administration’s abrupt withdrawal of funds from the U.S. Agency for International Development, has made Congo’s already ailing health system dysfunctional, Volanarisoa said.

“It’s very dangerous,” she said. “There is no medicine, no equipment, no surveillance.”

Dilapidated Labs

Researchers at Congo’s National Institute of Biomedical Research had built a sophisticated molecular biology laboratory for surveillance in Goma, the country’s eastern economic hub. But the lab stopped functioning last year after the Rwandan-backed violently of Goma and , stunting the flow of international aid.

A soldier with the armed group M23 stands guard outside a molecular biology laboratory in Goma, in the Democratic Republic of Congo. The lab, built by Congo’s National Institute of Biomedical Research, stopped functioning after M23 seized the city last year, but the group is now cooperating with aid organizations to get the lab running and supply hospitals. (Jospin Mwisha/AFP via Getty Images)

Other cities in Congo lack well-stocked molecular biology labs, so they have instead relied on simple, automated tests that detect only one type of Ebola virus, said Eddy Kinganda-Lusamaki, a microbiologist at the biomedical institute. The shortcomings of these simple tests became obvious when the first samples tested in early May were negative for Ebola. Doctors were still worried, so they collected more samples, packed them in an icebox, and sent them to the institute’s main lab, in Kinshasa.

It took the samples six days to get there, traveling over bumpy roads and between storage facilities, Kinganda-Lusamaki said, and many were degraded by the time they reached the institute on May 14. Still, researchers identified an unusual variety of Ebola caused by the Bundibugyo virus, with a fatality rate of up to 50% and with no vaccines or drugs existing to treat it. They alerted authorities.

Later, investigators traced the first confirmed cases back to several deaths from unknown causes in a gold-mining town in Ituri. The Ebola was spreading there as early as March, with three of the group’s volunteers dying of unknown causes after burying bodies as part of their humanitarian work.

As of June 3, 363 Ebola cases and 62 deaths had been confirmed in the country, according to Congo’s . Tallies of suspected cases have fluctuated dramatically, a reflection of gaps in surveillance.

Researchers at the biomedical institute urgently want to improve labs in eastern Congo so they can test for Bundibugyo.

“We need support for local staff, training, equipment, consumables, and fuel,” for cars and backup generators, Kinganda-Lusamaki said. He also worries that expensive lab equipment could be stolen or destroyed by roving militias if war is permitted to continue in the east. “My brothers and sisters are perishing,” he said.

Conflict Aids Ebola’s Spread

Violence abets Ebola in other ways. As the outbreak was silently spreading in Ituri in late April, caught in the crossfire of armed groups fled, potentially carrying the virus with them. South of Ituri, Maurice Kakule Mutsunga, a doctor at a large general hospital, said he’s seen a surge of people by members of the Allied Democratic Forces, an linked to the Islamic State. “Every day this week we’ve received patients massacred by the ADF,” Kakule Mutsunga said in French, adding that bodies carried into the hospital have been decapitated by machetes.

A body is carried in Beni, a city in northeastern Congo, on May 31 after an attack attributed to the Allied Democratic Forces, an armed group linked to the Islamic State. (Seros Muyisa/AFP via Getty Images)

People displaced by attacks are living in dense quarters that provide perfect conditions for a virus that spreads through touch. A person sick with Ebola, or recently killed by it, excretes sweat, blood, and other liquids packed with viruses that cause the disease.

Unpredictable attacks have also prevented health workers from tracking down people who may be infected in remote villages, to offer them care and keep the virus from spreading to others, Kakule Mutsunga said. Less than a quarter of contacts that Ebola responders identified had been monitored for signs of infection, the WHO reported on May 21.

Contact tracing and isolation — the cornerstones of an Ebola response — are also fraught because of the slow turnaround time on tests. Kakule Mutsunga said samples from his hospital in the town of Oicha are shipped to Kinshasa on humanitarian flights that take off only once they are at capacity. Many patients can’t or won’t isolate themselves for a week while they wait on results, he said, so they may pass the deadly virus to those closest to them.

Congolese researcher Gang Karume said that scientific information about Ebola isn’t reaching many communities, partly because of the trauma of daily life. On top of years of conflict, more than 220,000 young children are in provinces where Ebola is spreading. He wasn’t surprised to learn that angry youths have set fire to Ebola treatment centers and stolen corpses from morgues.

“An empty stomach does not have ears to listen,” he said.

To reach people, the is relying on its network of some 250 priests in Ituri. “They’re deeply rooted,” said Volanarisoa, with Catholic Relief Services, which partners with Caritas. “They understand how to approach communities who refuse to seek treatment.”

Through this network, Volanarisoa and her colleagues have gotten in touch with health workers seeking medical advice and protective equipment. With private donations, the Catholic charities have transferred money to priests in the northeast who arrange for jeeps to carry cash and supplies to clinics.

“What we’ve provided will only last for a few weeks,” Volanarisoa said. “The need is really immense.”

Another crippling factor is that the United States is far less involved than in the past, aid workers said. The Trump administration left the WHO, dissolved USAID, and downsized the Centers for Disease Control and Prevention.

“The U.S. is just not the player it used to be,” said Jeremy Konyndyk, a former USAID official who led the agency’s response to the world’s largest Ebola outbreak, in West Africa from 2013 to 2016. “We used to have a stockpile of gear for an Ebola response that we could throw on an airplane and get it to where it needs to go,” he said.

The U.S. used to give hundreds of millions of dollars to the WHO and nongovernmental organizations with experience fighting outbreaks. Under President Donald Trump, the State Department has announced that it will give $350 million to a pooled fund maintained by the U.N. Office for the Coordination of Humanitarian Affairs, which will then distribute funds to aid groups.

“This adds steps,” Konyndyk said. “The organizations that are ready to roll now are not confident that they will get money, so they’re kind of frozen.”

Déborah Nzale leaves her shelter on May 28 in a camp for people displaced by violence in Ituri province. (Glody Murhabazi/AFP via Getty Images)

Even then, aid can take weeks to materialize on the front line. During the West Africa outbreak, more than two months passed between the WHO’s declaration of an international emergency and significant help arriving. In the interim, the Ebola death count more than quadrupled. Nurses, doctors, and ambulance drivers .

Front-line workers in Congo face a similar fate if help doesn’t arrive soon. Furaha said her hospital is running out of clean water. “All of this accumulates,” she said. “Healthcare workers will reach a breaking point.”

Chloé Fostier Hernández helped translate interviews for this report.

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Louisiana’s Reporting Law Chills Immigrant Medicaid Applications

Halle Parker, Verite News — Thu, 04 Jun 2026 09:00:00 +0000

Yolibeth’s 4-year-old daughter scrambled headfirst onto a cushy leather love seat at their home near New Orleans and pushed a hairbrush into the hands of Miriam Romero, a health coordinator who works with the family. Romero placed the girl in her lap and started brushing her dark hair.

Yolibeth, a 38-year-old single mother who moved to South Louisiana from Honduras 15 years ago, watched them, smiling. The daughter is the youngest of five children living in this mixed-status household. Yolibeth and her two oldest kids don’t have legal immigration status, but the other three — ages 4, 9, and 13 — were born in the U.S. and are citizens.

All of her U.S.-born kids were enrolled in Medicaid at birth, which made it affordable for her to take them to the doctor for regular checkups when they were little. Her oldest two, ages 15 and 17, have never had health insurance, so Yolibeth relies on low-cost community clinics when she can afford it.

But now she worries that healthcare access for all of her children is slipping away. Yolibeth has been waiting for months to hear whether any of her children’s Medicaid renewal applications has been approved. She fears they will be denied because of a new Louisiana law targeting noncitizen Medicaid enrollees, even though she isn’t applying for herself. She worries particularly about her 4-year-old’s access to routine care and required childhood vaccines.

“ I cannot access the same services, and so my child is not getting what she needs to grow healthy,” Yolibeth said in Spanish as her daughter giggled on the love seat.

Verite News and �鶹Ů�� Health News agreed to not use Yolibeth’s full name, because she is worried about repercussions related to her immigration status.

Romero (left) welcomes a community member to Familias Unidas en Acción’s office in New Orleans in April. (Christiana Botic/Verite News and CatchLight Local/Report for America)

Romero, who works for a local immigrant advocacy group, said that in a single week she received calls from eight immigrant families who had been denied after applying for Medicaid on behalf of children who are citizens.

“Because of the law that passed in Louisiana, children are losing their Medicaid every day,” Romero said in Spanish. “The more time that goes by, the more children are impacted by it.”

Romero said that all children from mixed-status families are likely to be denied Medicaid by the end of the year.

Missing Out on Care

Nationally, many immigrants said they skipped or delayed healthcare last year, citing issues including costs, struggles finding services, and fears about their or a family member’s immigration status, by �鶹Ů�� and The New York Times. Immigrants without legal status were the most likely to skip or delay care for themselves or their children. An increasing number of immigrants avoided applying for programs like Medicaid, too scared to risk drawing attention to their or a family member’s immigration status, even if they were eligible.

In Louisiana, where about a third of residents are enrolled in Medicaid, the has added to those fears. The law requires the Louisiana Department of Health to verify Medicaid applicants’ U.S. citizenship, terminate coverage for applicants with “unsatisfactory” proof of status, and report those applicants to U.S. Immigration and Customs Enforcement. Since the measure passed in Louisiana, similar bills have passed in North Carolina, Wyoming, Indiana, and Tennessee. At least three other states were considering similar measures this year.

State Rep. Chance Keith Henry, a Republican who sponsored the Louisiana bill, did not return calls or emails from Verite News seeking comment on the effects of the law. He said in last year’s state House floor debate that he didn’t anticipate any chilling effect on immigrants seeking healthcare. He also said that children born in the U.S. to parents without legal status would still receive Medicaid.

“This is making sure that American citizens and our taxpayers are taken care of and not illegal immigrants,” he said in the May 2025 floor debate.

State health officials said Medicaid applicants can’t be reported to ICE under the law without a formal investigation request by “the appropriate authorities.” Otherwise, reporting applicants without their consent would violate federal Medicaid and privacy laws.

But immigrant rights advocates say the law has had a chilling effect on applications and has led to immigrant families losing healthcare and resources they qualify for.

They said cutting off that access compounds the fear created by immigration enforcement crackdowns in states including and Minnesota, and by federal policy changes such as between ICE and the Centers for Medicare & Medicaid Services and for Medicaid.

Advocates said it’s unclear whether the new law has led to any detainments or deportations of people applying for Medicaid or other public benefit programs. But Aaron Moseley-Saldívar, a legal and public policy adviser with the Louisiana Organization for Refugees and Immigrants, said the legislative and policy changes act as a deterrent to immigrant families, even if they qualify for Medicaid as a legal resident, refugee, or asylum seeker, or have another form of legal status.

“ People are not applying for things that they probably otherwise would be eligible for, because they are intimidated by these laws and they’re worried that they’re going to get caught up in the system,” Moseley-Saldívar said. “ You have a large amount of people in Louisiana that are not leaving their homes at all, because they’re afraid of policies like this.”

Moseley-Saldívar said he believes the Louisiana law and similar policies are primarily aimed at removing people from state services. The state legislature passed a on May 27 to build on the 2025 law. It seeks to further narrow which noncitizens are qualified for public benefits in Louisiana, even though such restrictions for Medicaid are typically governed at the federal level.

The Louisiana Department of Health’s on the new law does not contain any data on applicants reported to ICE since the law took effect last August. But by February of this year, the state had terminated the coverage of 87% of enrollees who had unverified immigration or citizenship status as of June 2025.

From July 1, 2024, to June 30, 2025, according to the report, 1% of the 1.6 million people in Louisiana enrolled in Medicaid weren’t citizens, and fewer than 4,000 had an unclear immigration status.

Romero says that all children from mixed-status families in Louisiana are likely to be denied Medicaid by the end of the year. (Christiana Botic/Verite News and CatchLight Local/Report for America)

‘A Double-Edged Sword’

Late last year, more than 600 people lined up at 4 a.m. outside a Louisiana Organization for Refugees and Immigrants health fair, hoping to receive a free health checkup, said Sharon Njie, the nonprofit’s communications and strategic partners director. The fair was scheduled to begin at 9 a.m.

“ We had to start calling the doctors to see if they could come there at 7 a.m., because these people have been waiting for two hours in the cold,” Njie said. “We were so overwhelmed.”

Romero said some families in the New Orleans area have been waiting six months to vaccinate their children at one of the free events put on by healthcare providers. But she said fewer free health events for children have been scheduled, and even fewer for adults. For many of the residents she works with, Romero said, preventive care such as a Pap smear or prostate screening is out of reach.

“The challenge right now is a double-edged sword of people not going to the doctor out of fear but also ending up in an emergency that is too hard to treat,” Romero said. “It’s a life-or-death situation.”

For families with no other option, Njie and Romero try to connect people to doctors sympathetic to the immigrants’ plight and willing to absorb the cost of care or offer a discount, such as medical providers who are immigrants themselves.

But that does not address the systemic problems of immigrant access to healthcare created by the state law and federal immigration policies, or the lower quality of care for those who seek it. For example, one local New Orleans clinic, Luke’s House, caters to Spanish-speakers and immigrants, though it’s staffed largely by medical students, Romero said, so the level of care isn’t the same.

Romero says some families in the New Orleans area have been waiting six months to vaccinate their children at one of the free events put on by healthcare providers. (Christiana Botic/Verite News and CatchLight Local/Report for America)

While she waits for word on three of her kids’ Medicaid applications, Yolibeth secured a free insurance plan for them on the Louisiana Affordable Care Act marketplace, she said. But she hasn’t found any doctors who will accept the coverage, she said, leaving them effectively uninsured.

When her 13-year-old son recently fell ill, she wanted to take him to a pediatrician. But she said she couldn’t afford the $200 the appointment would have cost, plus any tests and medication.

Without a doctor’s note to provide proof of his illness, she said, she had to send her sick son to school, potentially exposing other children to a virus. Earlier in the school year, she was called into the school’s office after he missed five days because of illness. In Louisiana, truancy can be punishable with parental fines, community service, or jail.

Romero said if enough school is missed because of sickness, a criminal case could lead to family separation.

“That is unthinkable,” she said. “All because a family could not afford to take a child to see the doctor as opposed to these things being guaranteed to begin with.”

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RFK Jr. Seeks To Peek at Americans’ Medical Records for Clues on Autism and Vaccines

Amanda Seitz — Thu, 04 Jun 2026 09:00:00 +0000

U.S. health secretary Robert F. Kennedy Jr. is pursuing federal government access to most Americans’ medical records, in a quest to research a link between vaccines and autism — a connection the medical establishment studied for decades and flatly rejects.

The Department of Health and Human Services is seeking data from little-known state systems that allow hospitals and clinics to exchange detailed, identifiable patient information, �鶹Ů�� Health News has learned.

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

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

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

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

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

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

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

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

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

William “Reyn” Archer III, a former Texas health commissioner, attends the Advisory Committee on Immunization Practices meeting at Centers for Disease Control and Prevention headquarters on Sept. 20. (Mary Conlon/AP)

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

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

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

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

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

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

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

A System To Monitor Chronic Disease

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

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

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

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

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

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

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

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

A Kennedy Partner in Nebraska

At least one state has been cooperative.

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

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

“They’re looking at the data differently and providing some insights back to the CDC,” Bland told �鶹Ů�� Health News.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Former CDC official Daniel Jernigan greets a supporter after resigning from the agency on Aug. 28. (Elijah Nouvelage/Getty Images)

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

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

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

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

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

�鶹Ů�� Health News data reporter Maia Rosenfeld contributed to this article.

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