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Even in Blue States, Hospitals Have Continued To Drop Gender-Affirming Care for Youths

Karen Brown, New England Public Media — Wed, 24 Jun 2026 09:00:00 +0000

One afternoon in late 2024, a sixth-grader nicknamed Bug came home from school with an announcement to make. Bug, who was assigned female at birth, told his parents he was a boy — and would be using he/him pronouns.

“OK, cool,” his mother, J, remembered saying. (J asked to be identified by only her first initial, and Bug by his nickname, because the family fears harassment.)

“‘What do you need to be supported?’” she recalled asking next. “He asked to get healthcare.”

This was the kind of moment J had been anticipating since the family had moved earlier that year from Texas to Massachusetts, for its more liberal and inclusive politics. She felt confident they could find the right medical experts. But she hadn’t realized that access to gender-affirming treatment could disappear even when their state’s laws and leaders supported it.

Individual hospitals all over the U.S., in red and blue states, have responded to President Donald Trump’s attacks on transgender healthcare by deciding to withdraw care on their own. At least did so in the first months of the Trump administration as it threatened to pull back federal funding or initiate fraud or wrongful-claim investigations, and such services have continued to drop off since.

Bug and his younger sister were born in Austin, Texas, but J and her husband became worried after the state outlawed abortion; dismantled diversity, equity, and inclusion programs; and limited medical and civil rights for queer and transgender people. The parents worried the support services they needed for the siblings, both of whom have autism, might be affected, too.

“I had a fear of being like the frog in the boiling water and not realizing what was happening until it was too late,” J said. “I needed to get the kids out of Texas.”

So when Bug came out as trans, J was relieved they’d landed in a state that not only has a to who offer but also is requiring commercial insurance, which Bug’s family has, to cover it.

After Bug’s gender announcement, J’s queries led her to the largest hospital system in the region, Springfield, Massachusetts-based , where they began the months-long process of getting set up to start hormone therapy.

Bug, an artistic 14-year-old who loves horses, cats, and making short films with friends, was too old for , but he was excited about the prospect of starting on testosterone. That would cause his voice to deepen, facial hair to grow, and muscles to get bigger.

“Every part of it sounds fun,” he said.

J (right) and her son, Bug, at their home in western Massachusetts. Bug, who came out as a trans boy in 2024, had turned to Baystate Health for treatment until the health system stopped providing gender-affirming medications to youths. (Karen Brown/New England Public Media)

But this past February, two weeks before Bug was scheduled to start testosterone, Baystate announced it would no longer provide gender-affirming medications to minors, offering only counseling. A letter to patients’ families did not explain why.

Baystate spokesperson Heather Duggan sent a statement that said the decision to end treatment for minors reflected the fact that Baystate could lose “hundreds of millions of dollars in government reimbursement” as a result of the Trump administration’s plans. “Nearly 70 percent of Baystate Health’s patients rely on Medicaid and Medicare for coverage,” it said.

All Bug knew was that the care he’d eagerly awaited was about to vanish.

“I felt frustrated that they would do that,” Bug said.

“I bet there’s tons and tons of kids who are like: ‘OK, I’m going for trans-affirming healthcare. Yay!’” he said. “And then, like, tons and tons of kids were disappointed and sad and frustrated.”

J said it felt as if the floor had fallen out from under them. “Maybe this is naive, but I didn’t think that would happen in Massachusetts,” she said.

Baystate is among the providers still choosing not to offer puberty blockers and hormones as the issue wends its way through the courts. This spring, in , a federal judge concluded that it was unlawful for the Department of Health and Human Services to threaten federal funding for providers that offered gender-affirming care to minors. In June, another federal judge cleared 16 states, including Massachusetts, with another lawsuit against the administration over its push to criminalize gender-affirming care.

Baystate Medical Center in Springfield, Massachusetts. The Baystate Health system stopped providing gender-affirming medications to youths in February, after the Trump administration said it would pull Medicaid and Medicare funding from hospitals providing them. (Karen Brown/New England Public Media)

The American Academy of Pediatrics declined an interview request but said in a that young patients and their families should make decisions about gender-affirming care with their doctors, “delivered with compassion, and offered without political interference.”

One mother of a former Baystate patient said that before her child came out as a transgender girl, she had been severely depressed, battling suicidal thoughts. (The mother asked that only her first initial, L, be used, because the family also fears harassment.)

After Baystate doctors prescribed puberty blockers and estrogen, her daughter’s mood and grades rose markedly, L said. So when she received the letter announcing Baystate was ending the medical treatment, she was furious. L said she and other parents filed civil rights complaints with the Massachusetts attorney general.

The attorney general’s office did not respond to a request for comment.

“There’s a sense of, ‘How could you?’” L said. “And there’s also the awareness of the impact just pulling care could have on a youth — from a physical health perspective but also from a mental health perspective.”

L and J both found alternatives for their children. L asked the family’s primary care doctor to take over hormone prescriptions. Bug’s family was referred to in Northampton, Massachusetts, that said it has taken on about 50 of Baystate’s former patients.

“Transhealth has been staffing ourselves up for a while now in anticipation of the fact that this may be happening across the state,” said.

Erwin said Transhealth can weather the funding threats because the clinic gets large private donations and is not as dependent on Medicaid and Medicare as most hospitals. But Erwin said that doesn’t entirely reassure the broader LGBTQ+ community, including transgender adults.

“When you see something like that go down, people get scared that it’s ultimately going to happen to everyone,” Erwin said.

In May, Colorado’s Supreme Court in that state to resume medical treatments for transgender youths, while in Texas compelled a children’s hospital there to do the opposite — start the nation’s first “detransition clinic.” The Trump administration has continued to pressure providers, including by of transgender minors.

After Bug’s false start at Baystate, he was able to start taking testosterone at the new clinic in the spring.

His mother, J, said that the treatment is going smoothly and that Bug has learned how to give himself the injections. But J is nervous that the federal government will find other ways to stop his treatment again. She sometimes second-guesses the family’s move from Texas to Massachusetts, wondering whether they should have gone to Canada instead.

This article is from a partnership that includes , , and ��ϳԹ�� News.

��ϳԹ�� News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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Medicare’s AI Push Snarls Patients and Doctors in Errors and Delays

Darius Tahir — Tue, 23 Jun 2026 09:00:00 +0000

Bill Curry, 65, raises cattle on the same land in rural Oklahoma once owned by his father and generations before him. Each quarter, for several years, he has made the 2½-hour drive to Oklahoma City for an epidural in his spine to treat his back pain.

But this year, because of a new Medicare program, Curry has traveled a little more often.

In February, during one trip, he was told unexpectedly that he needed preapproval for the procedure. Then he went again a month or so later to get the injection, for a total of 10 hours on the road. His clinic wanted him to come in a third time, which they had never asked of him before. That appointment was “just to fill out a piece of paper to tell them how you feel again,” Curry said, so he hasn’t gone.

In January, Oklahoma became one of six states to begin a pilot program testing the use of preapprovals in traditional Medicare, the federal health insurance program for people 65 and older or with disabilities. Medicare had previously eschewed the practice — also known as prior authorization — which requires patients or someone on their medical team to seek insurance approval before proceeding with certain procedures, tests, and prescriptions.

Epidurals like Curry’s are among 13 medical services subject to the new program because the Trump administration says they’re prone to fraud or misuse. Powered by artificial intelligence, the program — called the Wasteful and Inappropriate Service Reduction Model, or WISeR — is intended to save the federal government money and protect patients from potentially unsafe or unneeded care.

Yet early reviews from Oklahoma and the other pilot states — Arizona, New Jersey, Ohio, Texas, and Washington — suggest WISeR’s rollout has not been smooth. Patients, doctors, and other healthcare professionals who spoke with ��ϳԹ�� News say the effort has created confusion, errors, long wait times, and stress. Some described the rollout as “horrendous” and say people enrolled in Medicare in the pilot states are now getting ensnared in the same red tape as those with private insurance.

One key concern is that it all happened too hastily. WISeR was and launched in mid-January.

That was “quicker than normal” for the federal government, said Todd Baker, who recently stepped down as CEO of the Ohio State Medical Association. Doctors “just sort of had to figure it out,” added Jeb Shepard, director of policy at the Washington State Medical Association.

Government contractors have also acknowledged the rapid pace. “We’ve had an aggressive rollout from the time of being notified to going live,” said Jeremy Friese, CEO of Humata Health, the vendor for Oklahoma. Tech executives servicing other states have said they were still adding features to their products in the spring.

Abe Sutton, director of the Center for Medicare and Medicaid Innovation, which is administering the program, didn’t comment on the rollout schedule. But he said in a statement that the goal of these reforms is to ensure that prior authorization is efficient, fast, and streamlined.

“The model aims to reduce inappropriate care without delaying appropriate care,” he said.

Mehmet Oz, the leader of the Centers for Medicare & Medicaid Services, that they were “rolling out some prior authorization on abused practices.”

“The purpose of these is not to deny care,” Oz continued. “It’s to make sure you get the care you need and deserve, not the care some unscrupulous doctor wants to use on you.”

Medicare has struggled in recent years with suspected fraud associated with particular services. The Department of Health and Human Services’ inspector general spending on skin substitutes, for example, had surged nearly 700% over two years, raising “major concerns about fraud, waste, and abuse.” Skin substitutes are among the currently subject to review under WISeR.

The program also imposes prior authorization requirements for kyphoplasty, a surgery for spinal fractures, which a report by the Medicare Payment Advisory Commission .

Sutton acknowledged, however, that “the percentage of providers committing waste, fraud, and abuse is small.”

Consumers and clinicians largely detest prior authorization. Even as federal health officials test the process for Medicare, the Trump administration is for those with private insurance. According to a conducted in January, 69% of insured adults consider prior authorization a burden for care.

Through WISeR, doctors and their staff log in to online portals to submit medical records that justify the procedures. Using artificial intelligence, the systems quickly approve applications that meet the program’s criteria, Friese, Humata’s chief executive, told ��ϳԹ�� News. He said there is an “immediate yes” in 88% of cases for which clinical data supports an approval.

CMS has touted the process as one in which decisions are returned within 72 hours. After that, clinicians receive a “universal tracking number,” which allows them to schedule the procedure and get paid. In practice, however, participants say the process is anything but easy.

The University of Washington’s medical system alone had nearly 100 patients waiting earlier this year for epidural injections due to WISeR-related delays, from the office of U.S. Sen. Maria Cantwell (D-Wash.) that drew on hospital association data. “Now, patients are subject to delays or denials which did not exist prior to the WISeR Model,” the report said.

Curry, the Oklahoma cattle farmer, said he might go to Kansas for future treatments to avoid the approval process. Dorota Gribbin, a New Jersey-based physical medicine and rehabilitation physician, said that by the time authorization came for one of her patients who needed a back pain procedure, the patient had gone to the hospital for more expensive care.

Jennifer Valle, a precertification and insurance supervisor at Clinical Radiology of Oklahoma, said when it comes to kyphoplasties, there has been a lot of “nitpicking” from reviewers. Other times, information her practice provides to CMS gets overlooked, she said, and reviewers ask for imaging that’s already in the file.

Claims with no problems are supposed to be paid within 15 days, said James Webb, a musculoskeletal radiologist in Tulsa, Oklahoma, who has also been frustrated by the prior approval and reimbursement process for kyphoplasties. “Six- to eight-week delays is what we’ve been seeing,” he said.

“It’s been horrendous,” said Jerry Sobel, a Phoenix-area pain management doctor. “Right from the beginning, there seemed to be no organization.” Sobel said that as of May, he hadn’t gotten paid by Medicare for nine epidurals.

“We continuously monitor operations and work closely with stakeholders to address questions and improve the provider experience,” said Sundar Subramanian, the CEO of Zyter, which has the contract for Arizona.

During an April webinar, another Zyter executive acknowledged a large backlog in payments stretching to January. Those backlogs “are currently being resolved,” Medicare’s Sutton said, without providing further detail.

When asked about other issues — including what doctors suspect are AI-driven errors — Medicare’s Sutton said the agency appreciates “feedback on provider experience.” It will be used “to help providers better understand WISeR processes,” he said.

Although CMS vendors say humans make the final decisions on approvals, doctors and their staffs believe artificial intelligence is playing a large role in the process and that denials are sometimes the result of AI hallucinations that garble or make up information.

One Arizona doctor, who wasn’t authorized by his practice to speak, recalled a denial saying his patient wasn’t eligible for procedures in the thoracic region, or mid-back. The patient needed an injection to the neck. Webb, the Oklahoma radiologist, documented four times that a patient lacked numbness, and yet his WISeR application was still denied, citing numbness, which, in the reviewer’s interpretation, would rule out the spinal surgery procedure.

Friese, Humata’s CEO, said he hasn’t heard about any AI hallucinations.

The process is also raising government costs. With more rejections, more appeals are being filed with Medicare’s administrative contractors. The government pays the contractors to handle the appeals, and Medicare’s Sutton acknowledged that the agency has “accounted for potential changes in the volume of Medicare appeals because of the WISeR program and its associated costs.”

Eighty-four percent of commercial insurers already use AI tools, according to a survey released in 2025 by the National Association of Insurance Commissioners, though they have consistently said AI isn’t used to deny prior authorization requests.

Its use in Medicare risks introducing friction and frustration into the program — and piling costs onto its beneficiaries. Prior authorization saves money for insurers partly by making patients pay a price in wait times and inconvenience, said Miranda Yaver, a University of Pittsburgh health policy researcher studying the technique.

“People will end up getting ensnared in a lot of red tape, having to be on hold, and getting rerouted,” she said. She often wonders whether prior authorization simply shifts costs to patients and doctors, rather than saving them.

Some doctors involved in Medicare’s prior authorization experiment believe it will inevitably expand beyond a few services officials in Washington consider fraud-prone.

“Everybody knows that if this pilot project works, it will be prior auth for basically all procedures,” said Mary Clarke, a family practice physician in Stillwater, Oklahoma. “If they can show that they can save money, then that’s going to be extrapolated and rolled out to other procedures and multiple other things in other states.”

When asked whether CMS is considering expansion of its prior authorization pilot, Sutton said in his statement that there are “currently no changes” considered for the list of services subject to the WISeR program, “but CMS continues to assess whether any changes are warranted.”

Do you have an experience with prior authorization you’d like to share? to tell ��ϳԹ�� News your story.

��ϳԹ�� News Southern correspondent Lauren Sausser contributed to this report.

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Tennessee Pharmacies Sell Potent Ivermectin, Led by Anti-Vaccine Doctor Who’s Taken ‘Bucketloads’

Brett Kelman — Wed, 17 Jun 2026 09:00:00 +0000

NASHVILLE, Tenn. — Four years ago, Tennessee became the first state to allow adults to buy the antiparasitic drug ivermectin from a pharmacy without first seeing a doctor. Pharmacies can use a pre-written, blanket prescription to sell to just about anyone who walks through their doors.

The drug is now marketed and sold across the state in roadside shops and small-town strip malls with little oversight from health authorities. Highway billboards advertise ivermectin as “Available Without a Prescription in Tennessee!” while dozens of pharmacies offer highly concentrated pills, sometimes at 10 or 20 times the potency of a standard tablet.

Ivermectin is a approved by the FDA for treating , which can generally be done with a single dose of three or four prescription-strength tablets. It is also used as a dewormer for horses and other livestock.

Its popularity surged during the pandemic as fringe doctors and anti-vaccine activists promoted it as a treatment for covid. have shown that ivermectin is against covid.

Nonetheless, it has since become a symbol of resistance against the medical establishment among conservatives and followers of the Make America Healthy Again movement, championed by Health and Human Services Secretary Robert F. Kennedy Jr.

Timothy Caulfield, a professor at the University of Alberta who studies health misinformation, said ivermectin became an “ideological flag” during the covid pandemic, opening the door for influencers to push the drug for other ailments to a “captured audience” even without proof it works for those conditions.

“This is really about profit. This is about political identity. This is about creating distrust in the existing biomedical community. This is about money,” Caulfield said in an interview with ABC News, which partnered with ��ϳԹ�� News to report on ivermectin.

After a hantavirus outbreak on a cruise ship earlier this year, unproven claims that ivermectin is effective against the virus have been spread by some popular social media accounts and right-wing figures, including former congresswoman . The World Health Organization says it has seen that shows ivermectin is an effective hantavirus treatment.

Tennessee’s ivermectin bill was shepherded by a Republican supermajority in 2022. Its passage blindsided state medical officials and handed a victory to medical groups that spread covid misinformation.

Some pharmacy websites now offer the drug as a treatment for covid, “long haul vax symptoms,” diabetes, or cancer — despite no evidence of its effectiveness for those purposes — while the largely gives pharmacists immunity from lawsuits or professional sanctions related to ivermectin.

The law was also a harbinger of legislation to come: More than two dozen states have since considered look-alike bills that would make the politicized medication available without a requiring a doctor visit.

John Mafi, a UCLA internal medicine physician who has studied the rise of ivermectin among cancer patients, worries it will lure people away from proven treatments. He co-authored a new study in prescribing rates for ivermectin and another antiparasitic drug, particularly in the South. The rise followed a January 2025 episode of the Joe Rogan Experience podcast in which actor Mel Gibson claimed ivermectin and other drugs cured three friends with stage 4 cancer.

“It’s going back to 19th-century quack science,” Mafi said about off-label use of ivermectin. “It is alarming that I’m seeing this really unproven therapy being touted to so many potentially vulnerable Americans.”

Concentrated ivermectin pills like these are sold at compounding pharmacies across Tennessee. Under a 2022 law that made the drug available to people without requiring a doctor visit, some pharmacies offer pills that are 10 or 20 times the strength of standard ivermectin tablets. (Brett Kelman/��ϳԹ�� News)

The FDA says ivermectin can be . Tennessee has seen a small but concerning rise in signs of overuse. The Tennessee Poison Center, which fields calls from people exposed to drugs or toxic substances, received more than 60 calls for possible ivermectin poisoning in 2025, the most since 2021. They included reports of vomiting, blurred vision, neurological problems, and difficulty walking.

“People are taking this because they just feel unwell. It’s almost like a panacea now,” said Rebecca Bruccoleri, the poison center’s medical director. “I’ve heard rumblings on the internet of using ivermectin for an alternative cancer treatment, and we’re seeing it definitely in here.”

Pharmacist Paul Hughey has dispensed ivermectin under the new law at two Tennessee pharmacies: Mt. Juliet Pharmacy and Compound Rx. He estimated that “up to 20 people in a week” are buying ivermectin but that peak demand was double or triple that amount.

For years, Hughey said in an interview, customers have relayed emotional “testimonies” about the drug healing the sick, “especially with the cancer patients.”

“I’ll get a doctor call in and they say: ‘Guess what. So-and-so is cured.’ And it’s just amazing to hear that. So anybody who doubts that,” Hughey said, “I don’t really know that they’re practicing medicine. I think they’re just following the narrative.”

‘I’ve Taken Bucketloads of This Stuff’

The linchpin of Tennessee’s ivermectin market is , a conservative doctor to the creation of the 2022 ivermectin law. She has with pharmacies across the state empowering them to sell the drug.

Tennessee’s law to dispense ivermectin without a specific prescription for each patient, through a “collaborative pharmacy practice agreement” with a doctor who provides what is functionally a pre-written, nonspecific prescription for all potential customers.

In podcast interviews, Sibley has said she has made as many as 40 of these agreements with Tennessee pharmacies, which she said forward her the paperwork on each ivermectin customer. Before selling the drug, pharmacies are required to ask customers questions about medical conditions and medications that could cause complications if taken with ivermectin. Afterward, the collaborating physician also is expected to receive a record for each person who purchases ivermectin.

“We literally have folks coming from all over the world to get our ivermectin,” Sibley said on in February 2025. “As the collaborator for these pharmacies, I get every person’s sheet.”

“They’re from every state,” she said. “They’re from Canada. They’re from Europe.”

Sibley did not respond to requests for comment.

Denise Sibley, a doctor and vaccine opponent, testifies before Tennessee lawmakers in favor of the state’s 2022 bill allowing ivermectin to be offered without a specific prescription for each patient. Sibley has since signed agreements that empower numerous pharmacies to dispense ivermectin this way. (Tennessee General Assembly; screenshot by ��ϳԹ�� News)

��ϳԹ�� News has independently confirmed that Sibley signed agreements with at least 10 pharmacies. The agreements say pharmacists shall dispense ivermectin only in Tennessee, where Sibley is licensed, although one of those pharmacies said friends and family in Tennessee can “.”

Hughey, the Tennessee pharmacist, said Sibley had prescribing agreements ready to go when the law was enacted. He credited her with advancing ivermectin sales throughout the state.

“Had Dr. Sibley not stepped in and really pushed forward, there’s no telling how hard it would have been,” Hughey said. “It would have been a lot less widespread.”

Sibley also works with Children’s Health Defense, the Kennedy-founded group that has become one of the nation’s most influential anti-vaccine organizations. In podcasts, Sibley has referred to the covid vaccine as a “” and “ that’s ever been produced.”

Separately, before Tennessee legislators in 2024 about an alleged plot to change the weather and block sunlight. The New York Times then included her .

Sibley has said in podcast interviews that she was told by God to treat covid patients. She said she has advocated for ivermectin ever since.

“God agrees with what I’m doing,” Sibley said in 2023 on the podcast , which is recorded in Nashville. “I wake up every day and I say: ‘Yes, sir. I’m reporting to duty.’”

In legislative and government hearings throughout 2022, Sibley testified that she had treated around 4,400 people with ivermectin, including some Tennessee lawmakers, all without taking payment. Sibley described ivermectin as “a wonder drug” and said making it more available “.”

“I’ve taken bucketloads of this stuff myself,” Sibley said . “I feel like I’ve been a good test subject.”

Sibley has said she dispenses ivermectin using treatment guidelines developed by Paul Marik, who in 2020 co-founded the Independent Medical Alliance, a medical group that has promoted ivermectin as an effective treatment for , , , and .

Some Tennessee pharmacies now follow those protocols, too. The protocols recommend patients take 1.5 to five times as much ivermectin as is normally prescribed to treat parasites, with the dose taken for days or weeks instead of just once.

Marik and other ivermectin proponents sued the FDA in 2022 after it discouraged the use of the drug for covid by tweeting: “You are not a horse. You are not a cow. Seriously, y’all. Stop it.” The agency settled the lawsuit with no admission of wrongdoing and deleted the viral tweet in 2024.

The American Board of Internal Medicine has revoked Sibley’s and Marik’s board certifications but declined to explain why. Sibley still holds a Tennessee medical license; Marik is based in Virginia and is not licensed. Sibley and Marik the internal medicine board’s actions.

In response to questions from ��ϳԹ�� News, Marik, through an Independent Medical Alliance spokesperson, said medical science benefits from “open discussion of ideas and treatments.”

“Many independent doctors have reported that treatments like Ivermectin, in conjunction with traditional treatments, are showing promise. These ideas should be explored,” alliance spokesperson Lynne Kristensen said in an emailed statement.

Marik testified in favor of Tennessee’s ivermectin legislation in 2022, telling lawmakers that it is necessary because people would otherwise buy animal-grade ivermectin in stronger dosages meant for livestock.

“They’re buying ivermectin from farm stores. We don’t know the quality,” Marik said at a March 2022 legislative hearing on the Tennessee bill. “So this would prevent that from happening.”

One study identified a sharp increase in prescribing rates for ivermectin after a January 2025 episode of the Joe Rogan Experience podcast in which actor Mel Gibson claimed ivermectin and other drugs cured three friends with stage 4 cancer. (Brett Kelman/��ϳԹ�� News)

Tennessee Does Not Track Its Ivermectin Market

Arkansas, Idaho, Louisiana, and Texas enacted similar laws in 2025, and legislation that makes ivermectin available without the need for a doctor visit has been introduced or debated in at least 24 other states, according to a ��ϳԹ�� News analysis. That means half the country could be following Tennessee down an unlit path, because no one knows the full scope of its ivermectin market.

Tennessee does not effectively track which pharmacies offer ivermectin this way, and the state government has been unable to produce some foundational documents that pharmacies are legally required to file before they sell the drug, according to a ��ϳԹ�� News investigation.

Doctors and pharmacies are the Tennessee Department of Health when they sign agreements that allow ivermectin to be dispensed without patient-specific prescriptions, although it is not clear whether this consistently occurs.

In response to a ��ϳԹ�� News public records request for those ivermectin notifications filed by pharmacies, the agency over three months produced records from only 12 pharmacies, half of which have agreements with Sibley. The agency said it did not locate records related to at least 13 others that ��ϳԹ�� News has identified as selling ivermectin without requiring individual prescriptions.

Department of Health spokesperson Dean Flener said the agency would not answer questions about whether or how it regulates ivermectin or the pharmacies that distribute it.

Tennessee has said it does not track how much of the drug is sold in the state, and the amount is not well captured by federal or insurance data sources. That’s because the drug is often sold at compounding pharmacies, which make customized medications that are not FDA-approved and rarely covered by insurance. Drugmakers and wholesalers did not respond to questions about how much ivermectin they supply to pharmacies in the state.

Even the Independent Medical Alliance, one of ivermectin’s , says it doesn’t know how much is flowing through Tennessee.

States are getting pressure from clinicians ”who have had success with the use of ivermectin,” said IMA President Joseph Varon, a physician based in Houston. “That’s what happened in Texas, and that’s what happened in Tennessee.”

‘An Unproven, Potentially Unsafe Drug’

Once signed by Tennessee Gov. Bill Lee, the state’s ivermectin law took effect immediately — even before the state’s physician and pharmacy licensing boards created rules to guide the process, which Tennessee law also requires.

Some board members were shocked.

“We’re talking about an unproven, potentially unsafe drug,” Shant Garabedian, a doctor on the state’s Board of Osteopathic Examination, said of off-label ivermectin use during a . “It’s already law. Somehow it passes without our sort of input.”

In meetings that followed, at least five members of Tennessee’s medical boards voiced concerns about the law beyond safety and efficacy. Some said pharmacists could overcharge for a drug that normally costs pennies per pill. Some worried that a loosely regulated, cash-based ivermectin market might attract shady characters, especially because the law also shields prescribers from ivermectin-related civil lawsuits.

“This involves no clinical engagement,” Melanie Blake, then-president of the Board of Medical Examiners, said during a . “If they’re exempt from liability as well, I hate to think of things that individuals could do just to make money, but this would be one.”

Roman Pharmacy is one of the many compounding pharmacies in Tennessee that offer concentrated ivermectin pills. (Brett Kelman/��ϳԹ�� News)

The boards eventually enacted regulations affirming that ivermectin could be dispensed without any diagnosis. Board members said the law left them no choice.

“This is more of a situation where, legally, the legislature has decided for us,” John McGraw, another board member, said in a . “This has sort of tied our hands in a lot of ways.”

The first known sale under the new law occurred in Sibley’s home of Johnson City, a city of about 74,000 people in northeastern Tennessee. According to a , Sibley entered into a collaborative agreement with pharmacist Josh Harrison at The Compounding Lab, which dispenses drugs for people and animals.

The first customer was Bernadette Pajer, an anti-vaccine activist who has worked with Children’s Health Defense. In a of the Nashville podcast Rebunked With Scott Armstrong, Pajer said Sibley was a medical adviser for the group and described the first ivermectin sale.

“On that day, she was the doctor, he was the pharmacist making the sale, and I was the first customer,” Pajer said. “So that was pretty cool.”

Ivermectin pharmacies have spread across the state. In the suburbs of Nashville, Roman Pharmacy advertises ivermectin on at least four billboards along Interstate 65, and is mostly focused on the drug. Outside Knoxville, allows customers to order ivermectin for multiple sclerosis and Parkinson’s disease, or “to use it to detoxify.”

Roman Pharmacy did not respond to interview requests. Fresh Pharmacy declined an interview.

In Chattanooga, the Medicine Counter pharmacy says on its website that ivermectin should be taken “only as prescribed by your healthcare provider.” And yet the pharmacy sells some of Tennessee’s available without a prescription from a doctor — up to 21 times as strong as a standard tablet, for nearly $19 per pill — according to the ��ϳԹ�� News analysis.

Himanshu Patel, Medicine Counter’s head pharmacist, declined to be interviewed. He said in an email that the pharmacy operates in a “very competitive market” and that its strongest pills were below the maximum dose for humans evaluated by the FDA for safety purposes.

And then there is Compound Rx, which, in addition to selling ivermectin in its store, has built a website in preparation to ship nationwide. The site, which is in “test mode,” cannot currently make any sales. It also asks customers how they heard about the pharmacy, with a dropdown menu of answers that features right-wing figures such as Donald Trump Jr., Steve Bannon, Laura Ingraham, and Kevin Sorbo.

Who is not listed as an option? Your doctor.

Compound Rx, in Cookeville, Tennessee, is one of dozens of pharmacies in the Volunteer State that offer ivermectin without patient-specific prescriptions. Some pharmacies advertise the drug as available over the counter, even though customers technically have to request it from a pharmacist. (Brett Kelman/��ϳԹ�� News)

Hughey, the Compound Rx pharmacist, said he wasn’t involved with the website, which he said may never launch.

The highly concentrated pills are a concern for Tennessee state Sen. Richard Briggs, who worries lawmakers have created a “dangerous” ivermectin market rife with “misleading advertising” about what the drug can actually do.

Briggs, who is a surgeon and the only Republican who voted against the ivermectin bill in 2022, said he planned to introduce legislation to rein in the sale of ivermectin when lawmakers reconvene in 2027.

“But it may be a hard sell, because with the anti-vaxxers and some of these other folks,” Briggs said. “We don’t base a lot of things that we do on science, data, or facts. To a lot of folks in the legislature, the facts are just an inconvenience.”

‘Enough Trouble With Ivermectin’

Lawmakers in at least seven states have considered ivermectin legislation this year, including Alabama, Florida, Oklahoma, and South Carolina. If enacted, these bills would allow people to obtain ivermectin without an individual prescription, like in Tennessee, or make it available over the counter.

Kennedy praised such legislation at an event in Texas last August.

“I think it’s a really good bill,” he said of Texas’ ivermectin legislation, according to . “I think Americans should have the choice.”

But proponents have hit roadblocks. A Utah bill failed to advance out of the state House this year. In Oklahoma, some lawmakers have put up a fight.

“I’m a scientific person. I need to see some research and some data that shows what we’re treating,” Oklahoma state Rep. Cynthia Roe, a Republican and nurse practitioner who opposes the state’s ivermectin bill, said in an interview. “And God forbid somebody start giving it to their kid.”

Back in Tennessee, one of the medical boards that was alarmed when the law was enacted in 2022 started to distance itself from ivermectin altogether.

In January, the Board of Medical Examiners grappled with how to punish Ricky Lee Jackson, a doctor who was licensed in Tennessee and had been sanctioned and fined by Washington state’s medical commission. The Tennessee board normally mirrors punishments from other states without hesitation. But the Washington case centered on Jackson prescribing ivermectin for covid, which in Tennessee no longer required a patient to see a doctor.

After a debate, the board voted to reprimand Jackson — but told its staff to ensure the public record made .

“This board has been in enough trouble with ivermectin,” member Keith Anderson said, according to a . “Maybe we ought to just leave that out.”

journalist Blake Farmer and reporter Adam Friedman contributed to this report.

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Democrats Seek To Spotlight Rising Health Costs by Forcing Vote on Trump Regulation

Julie Appleby — Wed, 17 Jun 2026 09:00:00 +0000

In a move that mixes pure politics with weedy congressional procedures, Senate Democrats are seeking to force a vote to overturn a Trump administration rule that they say will make it harder to enroll in Affordable Care Act health plans and sharply raise out-of-pocket costs for those who do stay covered.

The measure is unlikely to pass in the Republican-controlled Congress, but Democrats could use the vote against their opponents on the campaign trail.

When the ACA rule was released in May, the Trump administration as a means to combat enrollment fraud, lower premiums for some people, and offer a wider range of insurance plans, including ones with no set network of doctors or hospitals.

But many Democrats warned the changes would hurt consumers already suffering from high healthcare costs as well as higher prices for gas, groceries, and other household needs. Estimates from the administration found the regulation, called a notice of benefit and payment parameters, could cause to lose ACA coverage.

Senate Minority Leader Chuck Schumer and fellow Democratic Sens. Tammy Baldwin of Wisconsin and Ron Wyden of Oregon plan to introduce on Wednesday a to block the rule.

Baldwin told ��ϳԹ�� News in a statement that the rule is “misguided” and said she was “committed to doing everything she can” to stop Republicans from “kicking Americans off their health care.”

The directive from the Centers for Medicare & Medicaid Services is an annual exercise that sets standards for ACA coverage during the coming year. Some of the changes in the finalized 2027 rule are technical, but many would affect consumers directly.

They include tighter income verification requirements. The rule also stipulates more eligibility checks on people applying outside of the normal annual enrollment period for such reasons as marriage, divorce, or loss of job-based coverage.

ACA plans themselves would look different too. Insurers would be able to offer some plans with 30% higher out-of-pocket limits (the amount consumers may have to pay each year in cost sharing such as copayments and deductibles), with a new ceiling as high as $15,600 for individual coverage or $31,200 for a family plan.

The Democrats’ effort to overturn the rule is the definition of a long shot; it would need a majority of votes in both the House and the Senate. But simply forcing a floor vote is likely to be seen as a win by the minority party.

“What Democrats are trying to do is get Republicans to vote on policies that would be unpopular if they rose to the level of public consciousness,” said Adrianna McIntyre, an assistant professor in the Department of Health Policy and Management at the Harvard T.H. Chan School of Public Health. “Democrats want to showcase that they want to change these policies, even if don’t have the votes to accomplish it.”

Congress has authority under the review act — enacted as part of a larger law in 1996 — to overturn rules issued by federal agencies. such disapproval resolutions have passed, hundreds have been introduced, often mainly to draw attention to an issue.

It is one of the few levers a minority party has to force action on the floor of the Senate.

That’s because if only 30 senators sign a discharge petition to send the measure to the floor, the Democrats get a vote, without needing to go through a Republican-controlled committee or hold a hearing. A companion resolution is expected to be introduced in the House on June 17.

And there’s no doubt that Democrats will try to use any floor vote on health costs as a litmus test for Republicans in the November elections.

“Time and again Democrats have used Republican efforts to undermine the ACA to their political advantage in campaigns, and this year will be no different,” said Larry Levitt, executive vice president for health policy at KFF, a health information nonprofit that includes ��ϳԹ�� News.

Polls show that the GOP could be vulnerable if Democrats can convince voters their party would do better on health costs, which are a top concern among voters.

, for example, found that 73% of adults see healthcare costs as a very big problem for the country, leading both inflation and the federal budget deficit. KFF’s tracking polls have found healthcare costs to be a top concern, even among Make America Healthy Again supporters allied with President Donald Trump.

At least half of people who identify as MAHA voters say those health costs on their decision to vote and which party they support.

Medical costs in general typically rise faster than inflation, driven by increased hospital and doctor bills and use of drugs, devices, and other healthcare. That leads to higher costs for employers that offer health plans to their workers and for taxpayer-supported programs such as Medicare and Medicaid, as well as higher premiums for insurance plans sold under the ACA. The consultancy PwC projects the cost to treat patients this year will , the highest in nearly two decades.

Higher premiums and lower subsidies also hit many ACA enrollees this year, with about 1.2 million fewer sign-ups than for 2025 as of January.

Costs “are a good Democratic talking point,” said Joseph Antos, a former government health official who is now a senior fellow emeritus at the right-leaning American Enterprise Institute. “Trump was going to solve inflation, and instead, what do we have?”

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Backed by Threat of Clawbacks, Feds Wield Tight Grip on $50B Rural Health Fund

Sarah Jane Tribble — Tue, 16 Jun 2026 09:00:00 +0000

In Maine, state health officials hoped to steer a slice of $190 million in new federal rural health funding to shield hospitals and clinics from the fallout caused by cuts to federal health programs.

Their plan would have helped pay to treat low-income, uninsured patients.

But federal leaders overseeing the five-year, $50 billion Rural Health Transformation Program said no.

“It was not our decision,” said Lisa Letourneau, a senior adviser at Maine’s health department.

Letourneau told an audience of healthcare providers, advocates, and community groups during a March webinar that the change was “disappointing.”

Maine isn’t alone in having to make changes to plans pitched to win a share of the Trump administration’s new rural health fund.

Centers for Medicare & Medicaid Services Administrator Mehmet Oz when announcing the rural health program awards last year and said his agency would help states “turn their ideas into lasting improvements for rural families.”

But state officials and healthcare leaders said it’s also clear the agency wants to encourage specific policy changes and hold states accountable to the promises they made and rules they agreed to follow.

During the past six months, as states raced to meet the program’s looming federal deadlines, CMS staffers worked with state health departments to make a flurry of changes, including scrapping some initiatives. The federal agency to rescind existing funding — or reduce future awards — if states don’t follow rules or meet their goals. “We will take the money back” if states “don’t abide by what they wrote, if they don’t do a good job,” Oz said at an event this month in Washington, D.C.

Congressional Republicans created the Rural Health Transformation Program as a last-minute sweetener in their One Big Beautiful Bill Act last summer. The funding was intended to offset concerns about the anticipated in rural communities from the law, which is expected to reduce Medicaid spending by more than $900 billion over a decade.

Read an excerpt from the One Big Beautiful Bill Act.

They’re Uninsured After Obamacare Became Too Costly. And They’re Far From Alone.

Andrew Jones — Mon, 15 Jun 2026 09:00:00 +0000

SUGAR GROVE, N.C. — Year after year, Ross and Rebecca Tobiassen saw their healthcare costs rise, having relied on the Affordable Care Act for federally subsidized health insurance since its start in 2014. Year after year, the couple in western North Carolina kept their coverage, believing the peace of mind was worth the cost.

But in December, that changed. The Tobiassens decided to cancel their insurance when Rebecca saw the cost of their monthly premiums would jump from $130 to more than $550.

“It makes no sense,” she said. “It’s not worth it anymore.”

The couple own and are the only employees of a small auto shop just west of Appalachian State University in the North Carolina mountains. Rebecca worries about her husband, whose work as a mechanic can be dangerous. A spring once shot a metal ball joint into their garage wall like a gun. A heavy object crushed Ross’ thumb. In 2020, Ross became mostly blind in one eye after repeatedly getting metal shards in it and developing an infection in his cornea.

The Tobiassens are among the Americans who canceled their ACA coverage after Congress allowed enhanced tax credits that helped pay for insurance plans to expire at the end of 2025. The Tobiassens benefited from those tax credits — like expected to drop or be dropped from their coverage as the year progresses, unable to keep up with the higher costs.

Established by the Biden administration’s American Rescue Plan Act during the covid pandemic, the expanded subsidies reduced monthly premiums for many families and prompted a tidal wave of new sign-ups, doubling ACA enrollment to .

The Centers for Medicare & Medicaid Services is expected to on how many people are no longer covered under the ACA, but an , citing Wakely Consulting Group research, showed enrollment could drop from over 22 million at the end of 2025 to as low as 16.5 million in 2026.

In North Carolina, individual ACA sign-ups for 2026 were down 22% compared with the year before, a greater drop than any other state, amounting to a decrease of more than 213,000 people, . While the Tobiassens’ two teenage daughters remain on Medicaid, Rebecca said the new prices showed that the federal government doesn’t care about families like hers.

“We’ve known that you don’t care about us,” she said, “but you’re making it plain and simple now.”

Ross Tobiassen became mostly blind in his left eye after repeatedly getting metal shards in it while at work in his auto shop and developing an infection in the cornea. (Andrew Jones/��ϳԹ�� News)

The couple’s insurance hadn’t helped them cover all their medical needs. When the pain from Ross’ eye infection worsened five years ago, Rebecca insisted he go to a specialist, who told them that fixing the eye through cornea replacement surgery and require Ross to take six months off.

Ross chose a less expensive treatment to kill nerves in the eye instead.

The couple know they’re taking a risk by not being insured. If something were to happen, they could face an enormous medical bill.

Ross, 47, said the blindness in the one eye doesn’t significantly affect his job. He works long hours, sometimes into the night to keep up with demand.

“I try not to think about it too much,” he said. “I just work.”

Uninsured, With No Backup Plan, After Obamacare Became Unaffordable

Rebecca Tobiassen, 44
Sugar Grove, North Carolina

Rebecca Tobiassen owns a small auto repair shop with her husband, Ross, in the western North Carolina mountains. She says their family could no longer afford Affordable Care Act insurance after tax credits expired last year and their monthly premiums shot up from $130 to more than $550. They have no immediate plans to sign up for coverage elsewhere and are saving up for out-of-pocket expenses instead. “We just need to be able to afford to get help when we seriously hurt ourselves,” she said of the U.S. healthcare system.

Katie Alexander oversees volunteers for Pisgah Legal Services, a western North Carolina nonprofit that helps low-income people secure health insurance. Alexander has helped North Carolina and Tennessee residents try to get ACA marketplace plans since Obamacare’s launch. She said she’s never seen anything like this year.

Nearly 100 Pisgah clients, out of about 700 that Alexander’s team worked with during open enrollment, decided to drop insurance this year, and many others chose cheaper ACA plans with less coverage, Alexander said.

Alexander said the people who have dropped their coverage include Lyft and Uber drivers. They’re trying to start their own businesses. They are artists and people who can work only part-time, because they’re chronically ill. Some are unable to get insurance through their employers, or they make too much to be on Medicaid.

“Even for folks who don’t have chronic illnesses,” Alexander said, “there’s just this nagging at the back of your mind, kind of constantly, of: ‘Don’t get hurt. Don’t get sick. Because you can’t afford that.’”

ACA premiums and deductibles steadily increased for years starting in 2022, then spiked during the enrollment period for 2026 plans, . The Tobiassens have seen every dip and rise in plan costs since 2014 when the plans launched. They joined immediately and paid about $30 a month, Rebecca Tobiassen said.

“You actually felt like you were benefiting,” she said.

But through the years as the marketplace became more expensive, the couple made concessions, switching at one point from a silver plan — historically the — to a bronze. The plan mostly provided for the couple’s basic needs.

As they saw their deductibles and premiums rise over more than a decade, Rebecca feared the day would come when they could no longer afford even the cheapest plan.

“Plans are unaffordable, no matter how you cut it,” said , a healthcare policy researcher at the University of Colorado Anschutz School of Medicine. “It’s just who is shouldering the unaffordability.”

Ross Tobiassen built his auto shop, which he owns with his wife, next to his home on his property in western North Carolina. (Andrew Jones/��ϳԹ�� News)

Ross Tobiassen says his job as a mechanic can be dangerous — he works late into the evenings sometimes to keep up with demand. (Andrew Jones/��ϳԹ�� News)

Gidwani and health economist , in a , found that most bronze plans, the cheapest ACA options for many, would be unaffordable without subsidies for the average person using the federal healthcare coverage.

Without subsidies, many families using these plans don’t make enough to afford premiums or deductibles, Gidwani’s research shows.

People who drop health insurance also change what’s known as the “risk pool,” Gidwani said, when a group of people share financial hazards.

If healthier people drop out of the risk pool, fewer people subsidize the people who get sick, Gidwani said. That means premiums for the people who get sick will increase again in the future, she added.

“That becomes what we call a death spiral,” Gidwani said.

Even if the subsidies hadn’t expired, taxpayers would have borne an estimated over the next decade to cover them, Gidwani’s study noted.

After dropping coverage they’d relied on for 11 years, the Tobiassens have no plans to return to the ACA marketplace. They looked into alternative options through a faith-based healthcare organization but decided to go without.

For now, they don’t have a plan B. They’ve set aside some money for a medical emergency. And if their savings run out, Rebecca Tobiassen said, they have a couple of last resorts to lean on: credit cards or family members.

Are you struggling to afford your health insurance? Have you decided to forgo coverage? Click here to contact ��ϳԹ�� News and share your story.

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Trump Bought Tobacco Stocks and Raked In Industry Donations as FDA Eased Standards

Darius Tahir — Thu, 11 Jun 2026 09:00:00 +0000

President Donald Trump, who once declared he had “saved” flavored vapes, grew his stock holdings this year to as much as $1.64 million in tobacco giant Philip Morris.

He also had holdings in Altria and a third leading tobacco company, though an apparent discrepancy in his disclosures clouds the extent of his investments. In 2025, tobacco interests donated $6 million to MAGA Inc., a super PAC that supports the president, and Trump’s inauguration. And, on April 30, a week before FDA guidance that provided a critical boost to the industry, Reynolds American dropped an additional $5 million into the super PAC’s coffers.

The stock trades and political contributions occurred as the Trump administration pursued a broadly pro-tobacco agenda: Its FDA piloted a fast-track program to approve nicotine pouches. It unveiled a program to allow vapes on the market more rapidly, despite resistance from career civil servants and leadership, culminating this year in guidance waving through flavored electronic cigarettes. It cut public health employees focusing on anti-tobacco policy. And it broadened enforcement against illicit e-cigarettes, competitors to the big industry players with a financial relationship to Trump.

It amounts to the most pro-tobacco, pro-nicotine presidency in some time — a remarkable policy given the tens of millions of deaths cigarettes caused during the 20th century. Even in recent years, anti-smoking groups say a half-million Americans a year die from cigarettes. Industry advocates say the toll helps justify a shift to e-cigarettes and nicotine pouches, which they say are less harmful. However, public health advocates say these products carry their own risks, such as addiction.

Lawmakers and public health leaders have criticized the recent FDA guidance and approvals as a “” that ignored scientific evidence to deliver what investment analysts have described as “very positive” steps for influential tobacco companies.

The scale of the money is “unprecedented and problematic,” said Brian King, who was pushed out of the FDA’s tobacco office last April and now works as an executive at the Campaign for Tobacco-Free Kids. He fears that steering public policy toward tobacco — still addictive and harmful to health — puts Americans at risk.

“It’s a gift on a platter with a side of public health malpractice,” he said.

The White House did not comment on the president’s investments or industry donations to MAGA Inc. Spokesperson Kush Desai said, “The only guiding factor behind the Trump administration’s health policymaking is Gold Standard Science. FDA’s regulatory treatment of nicotine pouches and vapes is rooted in recent evidence that has found that these products can help adults quit smoking.”

Philip Morris disputed any connection. Company representatives “regularly attend events and forums where we share our commitment to improving public health in the United States,” spokesperson Samuel Dashiell said, “starting with providing better options to America’s 45 million legal-age nicotine consumers.”

“We do not comment on individual engagements or on the personal financial matters or disclosures of public officials,” he added.

Other tobacco companies whose stock Trump has bought and sold during his second term or that donated to groups aligned with Trump — Juul, Reynolds American, and Altria — did not respond to requests for comment.

The financial stakes are huge. Investment analysts at Goldman Sachs say the newer products, touted as safer, make more money per sale than traditional cigarettes. Philip Morris expects Zyn pouches, for example, to make eight times the gross profits of its cigarettes, Goldman Sachs analysts said in March 2025.

When he ran for his second term, Trump promoted himself as a pro-tobacco candidate, posting that he had and that President Joe Biden and Democratic nominee Kamala Harris “want everything banned.”

Since late 2023, MAGA Inc. has received over $20 million in funding from the industry, federal campaign records show. Trump’s inauguration garnered nearly $4 million more. His ballroom project donations of an unknown amount from Altria and Reynolds American.

Recent Trump administration actions show he’s followed through with his campaign rhetoric. In May, the FDA released that allows manufacturers to market their vapes and nicotine pouches while awaiting agency approval. It also approved several vaping products. The month before, the Vapor Technology Association, which donated $1.25 million to Trump’s inauguration, it had met with the White House to discuss its concerns.

By that point, Trump had gone on a stock-purchasing spree. In March he made eight separate purchases of Philip Morris or Altria stock, worth as much as $275,000, according to a disclosure form that bears Trump’s signature.

It is difficult to be precise about Trump’s tobacco investments, because the financial disclosures show only ranges of investment amounts. They also have an apparent discrepancy. In January, the president sold $500,000 to $1,000,000 in Altria stock. But that’s confusing because previous disclosures didn’t show Trump held that much equity in Altria. The White House declined to comment on the matter.

The FDA’s May guidance and approvals drew condemnation from public health leaders, who worry that the agency is allowing products with flavors especially appealing to young people. “After years of recognizing the dangers flavored e-cigarettes pose to youth, it is deeply troubling to see FDA ignore the scientific evidence and reverse course,” American Lung Association CEO Harold Wimmer said .

“I think it’s blatantly illegal, both on its merits and also procedurally, because it was issued as a final guidance without even giving the public an opportunity to comment on it,” said Mitch Zeller, a former head of the FDA’s tobacco center.

A group of Democratic senators called the decision a “a free pass to addictive and harmful vapes” in letters to Reynolds American and Altria. It would lead to “a lucrative payday after years of unsuccessful legislative and regulatory efforts to weaken federal tobacco oversight,” they concluded.

Members of Congress are barred from insider trading, and many legislators would like to see trading of individual company stocks banned for all members. In the wake of Trump’s most recent financial disclosures, with revelations that he often traded in companies manufacturing GLP-1 drugs before his administration steered policy in a favorable direction, some members are calling for the president, too, to be barred from stock trading.

Trump’s tobacco policies have garnered favorable grades from investors. At Goldman Sachs, bankers described the May FDA guidance as “very positive” for Philip Morris and “a significant step in the FDA’s positioning toward enforcement and acceptance of nic pouch (as well as e-vapor) innovation generally.”

And Barclays analysts said the FDA’s guidance was good news for Juul, a leading vape producer. (In November, the company contributed $1 million to MAGA Inc.)

FDA resistance to speeding up approvals for these products reportedly contributed to the ouster of agency commissioner Marty Makary, who did not respond to requests for comment. According to and , the White House repeatedly intervened in the approval process.

“I served during the entire first Trump administration as center director, and there was never any pressure from any political appointee at FDA, at HHS, or the White House when it came to application review,” Zeller said.

But recent changes in FDA policy can be traced to the access tobacco firms have had to the White House, he said.

By and large, the Trump administration has delivered on industry priorities. Soon after the inauguration — which tobacco companies had donated heavily to — the administration withdrew a Biden-era proposal to ban menthol cigarettes. The administration has eased the path for nicotine pouches like Zyn, which were first approved under Biden. Investment analysts viewed government crackdowns on illicit e-cigarettes positively: Barclays wrote in January that “company commentary on enforcement has also been upbeat, suggesting that the tide could begin to turn in favour of the legal players in the market.”

What’s more, the Trump administration’s government layoffs have decimated public health’s tobacco control offices. The work of the Centers for Disease Control and Prevention’s office of smoking has been sharply curtailed; its flagship “Tips From Former Smokers” campaign, which seeks to persuade viewers not to smoke, has been off the air for months, King said.

“It’s not difficult to see that less dollars invested in prevention and control is going to lead to more tobacco product use and tobacco-related disease,” King said, especially given the government’s decades-long success in reducing cigarette usage.

The shift is particularly ironic given the administration’s focus — through its Make America Healthy Again slogan — on chronic disease. “Attempting to combat chronic disease without tobacco control is like attempting a triathlon without a bicycle: You are destined for failure before leaving the starting line,” King concluded.

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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 including several parents and others who have attributed autism to childhood vaccinations.

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

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

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

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

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

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

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

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

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

A Patchwork of Perspectives

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

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

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

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

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

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

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

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

��ϳԹ�� News data reporter Maia Rosenfeld contributed to this article.

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