Science & Health

As the debate over vaccine mandates heats up in Florida, there’s a push in the Legislature and the administration of Gov. Ron DeSantis to broaden the use of ivermectin.

A Republican legislator from Spring Hill has filed legislation to allow the over-the-counter sale of ivermectin suitable for human use even though the U.S. Food and Drug Administration has not authorized or approved ivermectin for use in preventing or treating COVID-19 in humans or animals.

Ivermectin is an effective treatment for parasites in animals and for use by humans to treat parasites such as head lice and scabies, according to the National Institutes of Health (NIH).

The FDA has not approved Ivermectin for treatment or prevention of COVID-19, and so far recommends against taking it for COVID-19, instead suggesting people get vaccinated for protection.

Nevertheless, there was buzz during the pandemic about using it for treatment for COVID-19.

HB 29 sponsor Rep. Jeff Holcomb, R-Spring Hill, did not immediately return Florida Phoenix’s request for comment. If approved, Florida would join the ranks of Tennessee, Arkansas, Louisiana, Idaho, and Texas in approving the medication for over the counter sales.

The governor, First Lady Casey DeSantis, state Surgeon General Joseph Ladapo, and Agency for Health Care Administration Secretary Shevaun Harris held a press conference at the University of South Florida Health College of Medicine to recognize World Cancer Research Day and to highlight $60 million in new cancer research grant opportunities.

There, the first lady said she expected some portion of the new grant funding to be used for cancer research on ivermectin.

“I know we should look at it. I know we should look at the benefits of it. We shouldn’t just speculate and guess,” DeSantis said.

Ladapo, seconded the idea.

“There’s been a lot of chatter about it, and this very simple drug that happens to be very safe, by the way, has unfortunately, you know it’s so much it’s been weighed down by all this politics, especially during the Biden administration.”

Ivermectin is not approved by the FDA for cancer treatment.

The FDA also warns large doses of ivermectin can be dangerous. “Even doses of ivermectin for approved human uses can interact with other medications, like blood-thinners. You can also overdose on ivermectin, which can cause nausea, vomiting, diarrhea, hypotension (low blood pressure), allergic reactions (itching and hives), dizziness, ataxia (problems with balance), seizures, coma, and even death.”

Ladapo and DeSantis defend no mandate push

Meanwhile, Ladapo and his boss DeSantis defended their push to eliminate vaccine mandates from Florida law, rules, and regulations.

“I hope that we continue to reject the normal and we pursue a path that feels righteous, that feels like we’re actually, you know, aiming toward the thing that we want to improve,” Ladapo said.

“That opportunity is there. Thankfully, we have leadership, uniquely in this state, to do it. And I hope it spreads like, like all those minor viruses that my critics are afraid of, or something.”

The minor viruses Ladapo referred to includes measles. The Centers for Disease Control and Prevention reports 1,514 confirmed measles cases this year as of Sept. 23. Six of those confirmed cases were in Florida. There were 11 confirmed measles cases in Florida in 2024.

Measles and other disease outbreaks occur as the percentage of school-age children in Florida who are vaccinated against measles, mumps, and rubella dips. While the target rate for MMR vaccination is 95%, Florida’s 2024-2025 rate was 88.8%.

That’s a near 5% point change from the 2019-2020 year, a KFF analysis shows, and well below the targeted 95% needed for herd immunity.

Ladapo and DeSantis avoided directly answering whether their children have been vaccinated. Ladapo said reporters should be asking substantive questions and likened the questions about the children to “silly games.”

“I actually don’t care about sharing information about that. I really don’t care at all. But I won’t. And I won’t because I’m not going to participate in the silly games that so much of the media chooses to partake in instead of the substantive parts of the issues.”

In addition to defending his anti-vaccine mandate push, Ladapo appears on board with the Trump administration’s announcement that autism rates are up because pregnant women are taking acetaminophen, the active ingredient in Tylenol, during their pregnancies.

“They acknowledge that not all the studies show harm, but some of them do show relation. And it’s not a total explanation for autism by any means, but it does appear to be that it’s reasonable to conclude that it may be contributing to the prevalence of autism in children,” Ladapo said.

When asked whether he intended to issue any guidance he said: “We’re still looking at it. So, we may have some more guidance, but it would probably be very much in line with where the FDA is.”

As soon as she fell, Deborah Buttgereit knew she couldn’t avoid going to the hospital.

“I could hear the bones moving around in my elbow,” said Buttgereit, who was 60 when she slipped on a patch of ice in December outside her apartment in Bozeman, Montana.

Emergency room scans showed she had fractured her left arm near the joint. Doctors told her she needed surgery to repair it.

At the time, Buttgereit didn’t have health insurance — she had struggled to afford coverage after her husband’s death. The local health system, Bozeman Health, estimated Buttgereit would have to pay $50,560 out-of-pocket for the outpatient surgery to have her elbow pieced back together.

The estimate noted: “You could be charged more if complications or special circumstances occur.”

Four days after her fall, Buttgereit went in for surgery, which took about three hours. During a follow-up visit, she said, her doctor told her the procedure ended up being more complicated than expected.

Then the bill came.

The Medical Procedure

Buttgereit broke her humerus, the upper-arm bone that meets two other bones and forms the elbow. The way the bone splintered is known as a distal humerus fracture. It’s rare as far as breaks go, accounting for only about 2% of all fractures among adults. But older people, as well as kids in high-contact sports, are more prone to the big falls that lead to such fractures. The injury is painful and can make it impossible to move the elbow.

Some of these types of fractures heal with time in a splint, but most often surgery is the only fix. The patient is put under anesthesia while a surgeon repositions fragmented bones with plates and screws.

The Final Bill

$97,998. That includes at least $44,300 for the operating room and anesthesia administration, plus more than $50,000 for medical supplies and implants, such as screws and plates. After the hospital applied a self-pay discount, Buttgereit was on the hook for $78,398.40.

The Problem: Surprise Complications, Surprising Charges

The hospital said the price for Buttgereit’s surgery increased because doctors encountered complications midprocedure.

In particular, the fall had shattered Buttgereit’s bone into more pieces than her surgeon anticipated, according to operating notes. That meant it took more time, skill, and supplies to reconstruct her elbow. And, since she was uninsured, Buttgereit alone faced the burden to pay the higher costs.

“I’ll make payments the rest of my life to pay it all off,” she said.

Buttgereit’s husband died suddenly in 2023. About a year later, she left her job with the company that had employed them both. The memories of him in that space were too difficult, she said. That also meant leaving behind her health coverage. She moved to Bozeman to be closer to one of her daughters and found a health plan at healthcare.gov that the federal government subsidized because of her limited income.

But she also faced a higher cost of living in Bozeman than her Social Security benefits could cover, and she needed part-time work. While that new income helped pay her bills, Buttgereit said, she no longer qualified for the same level of subsidized coverage and couldn’t afford her plan. So she dropped her health insurance.

About two months later, she fell.

After getting the surgery bill, Buttgereit began calling and emailing the hospital’s customer service team, asking how the price had risen from the $50,560 estimate to nearly $98,000. The hospital had automatically applied the self-pay discount of $19,600 to Buttgereit’s bill — 20% of the total. But that still left her with a tab of more than $78,000.

After more time to think pain-free, she said, she also wanted to know why the initial estimate was much steeper than those she found online for similar procedures.

Specifically, Buttgereit asked how to dispute her bill. When she felt she wasn’t making progress contesting the charges with the hospital, she asked about her options under the No Surprises Act, a federal consumer protection law.

According to emails reviewed by KFF Health News, a Bozeman Health billing employee incorrectly told Buttgereit the law applies only to ER services. The employee later said Buttgereit had the right to dispute the bill but gave her an incorrect deadline.

Hospital staffers recommended Buttgereit set up a payment plan and apply to the health system’s financial aid program.

Erin Schaible, a spokesperson with Bozeman Health, told KFF Health News that online estimates don’t reflect the specific details of a patient’s care. In addition to the shattered bones noted in Buttgereit’s surgery notes, Schaible said the physician identified nerve damage midsurgery that required additional work to fix.

“This situation highlights the importance of clear and compassionate communication,” Schaible said. “In response, our team leaders are revising internal protocols for escalating patient concerns and are reeducating staff on best practices for communicating cost estimate changes.”

The Resolution

Buttgereit refused to apply for financial aid, opting instead to challenge what she sees as inflated pricing. Using Healthcare Bluebook, an online price comparison tool that draws on insurance claims data, Buttgereit found similar procedures ranged from $8,000 to $40,000.

She said she believes that there are also errors on her bill and that the complications didn’t justify the price.

“I felt like going through financial assistance means that I’m OK with the price of the bill,” she said. “I want to get the bill reduced on the front end and then, if I need financial assistance, go through it.”

A billing employee emailed Buttgereit in May to offer an additional $7,000 discount if she set up a payment plan. If she later qualified for financial assistance, “we will adjust the amount accordingly,” the email said.

In June, the employee told Buttgereit her account would be put on hold before a collection process was initiated, “so that you have time to decide what to do.”

Buttgereit agreed to a payment plan of $100 a month, though she continued to contest the total charges.

At that rate, it would take about 60 years to pay off the debt — or longer, if the health system were to charge interest.

Buttgereit made one more bid for help: She emailed the White House.

This month, in the same week she got a detailed letter from the hospital standing by its charges, Buttgereit said she received a call from an official with the Centers for Medicare & Medicaid Services, saying she could dispute the bill to federal health officials.

The Takeaway

The best time to push back against a price is before surgery, upon receiving a hospital’s best guess on costs, known as a “good faith estimate.” Otherwise, undergoing surgery is considered tacit acceptance of that price as a baseline.

Patricia Kelmar, director of health care campaigns at the national consumer advocacy group U.S. PIRG, follows ways in which people get tangled financially in the health industry. She said patients should compare cost estimates by searching their hospital’s online pricing tool (as well as those of nearby hospitals) to see whether the estimates align. But not every procedure makes those lists, especially those for uncommon injuries, nor is every hospital’s list easy to access and navigate.

Post-surgery, patients have few resources to fight big bills, but a little-known rule in the No Surprises Act could help, Kelmar said.

The law, which took effect in 2022, is best known for protecting patients from surprise bills for out-of-network, emergency care. But it also created a formal dispute process for uninsured patients, or those paying completely out-of-pocket for nonemergency procedures, if their final tab is $400 or more than the initial estimate.

“This is a valid, important part of making sure that patients who are cash-pay have a watchdog,” Kelmar said.

People can start the patient-provider dispute process online, through the CMS website, by providing medical records and paying a $25 fee. Patients must initiate the process within 120 days of receiving the bill, and the bill may not be sent to a collection agency while under review.

An independent reviewer evaluates whether the final price is drastically different from what a health insurance company would have paid and whether the complication was predictable. If the review finds that the health provider erred on either front, federal health officials could require them to reduce the bill to match the original estimate or the median price insurers pay.

Buttgereit said she initially opted against pursuing that formal dispute process because, after such a review, the floor would be the hospital’s initial estimate, and she still had questions about how it would work. But after hearing from CMS, Buttgereit said it’s the path she plans to take.

“You’ve got to fight for yourself,” she said. “I don’t know where this is going to end up, but I feel a little bit more hopeful.”

Ann Bauer, a researcher who studies Tylenol and autism, felt queasy with anxiety in the weeks leading up to the White House’s much-anticipated autism announcement.

In August, Bauer and her colleagues published an analysis of 46 previous studies on Tylenol, autism, and attention-deficit/hyperactivity disorder. Many found no link between the drug and the conditions, while some suggested Tylenol might occasionally exacerbate other potential causes of autism, such as genetics.

Bauer, an epidemiologist at the University of Massachusetts-Lowell, and her team called for more judicious use of the drug until the science is settled.

On Monday, President Donald Trump stood beside Health and Human Services Secretary Robert F. Kennedy Jr. for what he called a “historic” announcement on autism. “If you’re pregnant, don’t take Tylenol, and don’t give it to the baby after the baby is born,” Trump said. “There are certain groups of people that don’t take vaccines and don’t take any pills that have no autism,” he added, without providing evidence. “They pump so much stuff into those beautiful little babies, it’s a disgrace.”

A fact sheet released alongside the White House briefing cited Bauer’s analysis. But she was alarmed by Trump’s comments. If prenatal Tylenol has any association, which it may not, it would help account for only a fraction of cases, she said. Further, research has not deeply examined Tylenol risks in young children, and many rigorous studies refute a link between vaccines and autism.

Bauer worries such statements will cut both ways: People may put themselves at risk to avoid vaccines and Tylenol, the only safe painkiller for use during pregnancy. And she frets that scientists might outright reject her team’s measured concerns about Tylenol in a backlash against misleading remarks from Trump and other members of his “Make America Healthy Again” movement.

“I’m really concerned about how this message is going to play out,” she said. “It’s a sound-bite universe, and everyone wants a simple solution.”

Autism experts at the Centers for Disease Control and Prevention were neither consulted for the White House’s long-awaited autism announcement nor asked to review a draft of the findings and recommendations, CDC scientists told KFF Health News, which agreed not to identify them because they fear retaliation.

“Typically, we’d be asked to provide information and review the report for accuracy, but we’ve had absolutely no contact with anyone,” one CDC researcher said. “It is very unusual.”

Trump and Kennedy promised this year that under their leadership the federal government would swiftly figure out what causes autism. Scientists who work in the field have been skeptical, noting that decades of research has shown that no single drug, chemical, or other environmental factor is strongly linked to the developmental disorder. In addition, both Trump and Kennedy have repeated the scientifically debunked notion that childhood vaccines may cause autism.

Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University, called Trump’s comments dangerous. Fevers can harm the mother and the developing fetus, she said, adding that fevers are more strongly associated with autism than Tylenol.

In an emailed response to queries, HHS spokesperson Andrew Nixon said, “We are using gold-standard science to get to the bottom of America’s unprecedented rise in autism rates.”

White House spokesperson Kush Desai wrote, “President Trump pledged to address America’s rising rate of autism, and to do so with Gold Standard Science.”

Had CDC scientists been allowed to brief Kennedy, they say they would have cautioned that simple fixes won’t make a dent in the number of autism cases in the United States: As many as 1 in 31 8-year-old children had autism spectrum disorder in 2022.

Systemic changes, such as regulations on air pollution, which has been linked to asthma and developmental disabilities including autism, and assistance for parents of disabled children, could improve lives for far more Americans with autism and other conditions than actions taken by the Trump administration on Sept. 22, researchers say.

One federal action is to consider updating the label on Tylenol and to “encourage clinicians to exercise their best judgment in use of acetaminophen for fevers and pain in pregnancy by prescribing the lowest effective dose for the shortest duration.” The American College of Obstetricians and Gynecologists already recommends acetaminophen “as needed, in moderation, and after consultation with a doctor.”

‘Political Crusade’

Despite Kennedy’s many years of speaking about autism, he rarely cites credible autism research or expert recommendations, Tager-Flusberg said. Instead, Kennedy repeats fringe, scientifically debunked theories linking vaccines to autism, despite rigorous studies published in peer-reviewed journals that refute a link.

At the Sept. 22 briefing, Trump said he spoke with Kennedy about autism 20 years ago: “We understood a lot more than a lot of people who studied it,” he said. Ahead of Trump’s first term in 2017, Kennedy said he met with the president to consider a commission on vaccine safety and autism. It didn’t happen then. But soon after Kennedy was confirmed as health secretary, he called autism “preventable,” pointed to “environmental toxins,” and contradicted the results of a CDC study finding that the main driver of rising autism diagnoses was that doctors increasingly recognize the disorder.

At a televised Cabinet meeting in April, Kennedy told Trump, “By September, we will know what has caused the autism epidemic and we’ll be able to eliminate those exposures.”

“You stop taking something, you stop eating something, or maybe it’s a shot,” Trump replied.

“He is on a political crusade,” Tager-Flusberg said of Kennedy, adding that vaccines, Tylenol, aluminum, and food dyes make for simple targets to rally against. “We know genetics is the most significant risk factor,” she said, “but you can’t blame Big Pharma for genetics, and you can’t build a political movement on genetics research and ride to victory.”

“RFK makes our work harder,” said Peter Hotez, a vaccine researcher and the author of a book about his autistic daughter, “Vaccines Did Not Cause Rachel’s Autism.” He said the book stemmed from conversations with Kennedy in 2017, in which Hotez shared studies pinpointing more than a hundred genes linked to autism, and research into the complex interplay between genetics, biological processes, and things that children and fetuses encounter during development.

“I sat down with him and explained what the science says, but he was unwilling or incapable of thinking deeply about it,” Hotez said. “He is extremely careless.”

In addition to its focus on Tylenol, the White House said it would move to update “prescribing information” on leucovorin — a medication related to the B vitamin folate — to reflect its use as an autism treatment. A small clinical trial in 2012-13 suggested the drug may help treat language problems in some children with autism. Tager-Flusberg said the findings warrant further study but clarified these were “old data, not a breakthrough.”

Likewise, studies finding a modest association between autism and prolonged Tylenol use were published years ago. Researchers have suggested the medicine might occasionally exacerbate factors associated with autism, such as genetics and oxidative stress, a biological condition that occurs for a variety of reasons that scientists are still unraveling.

Still, these studies couldn’t rule out the possibility that fevers prompting women to take Tylenol, rather than the medicine itself, might instead be to blame. Fevers and infections — including those prevented by vaccines — have also been linked to autism.

Nonetheless, Bauer’s recommendation would be to pause before taking acetaminophen while pregnant — blanket advice that doctors give for all medications during that period, but which may be ignored. “Try to alleviate discomfort in some other ways, like with a cold compress, hydration, or massage, before taking it,” Bauer said.

She welcomed the White House’s motion to consider labeling Tylenol to emphasize judicious use of the drug but worries about how the MAHA movement might distort a careful message. On Sept. 2, the right-wing news outlet One America News Network posted an interview with newly appointed CDC vaccine adviser Robert Malone, writing that Malone “speculates RFK Jr. may have an important announcement this month regarding a potential link between Tylenol, multiple vaccinations and autism in children.”

“I was sick to my stomach,” Bauer said, concerned that Kennedy would link her study to discredited theories, causing doctors and scientists to reject her far more measured work.

‘The Boy Who Cried Wolf’

Several medical and scientific associations have called for Kennedy’s removal or resignation. Many scientists are skeptical of what he says because much of it has been misleading or wrong. For example, he’s said HIV isn’t the only cause of AIDS (it is), that antidepressant drugs cause mass shootings (they don’t), that older adults don’t have severe autism (some do), that the measles vaccine causes brain swelling (it doesn’t), that covid vaccines were the deadliest vaccines ever made (they aren’t), that vaccines aren’t safety-tested (they are), and that vaccines contribute to autism (they don’t).

“This is like the boy who cried wolf,” said Brian Lee, an epidemiologist at Drexel University. “One day he might be right about something and Americans who are not prone to conspiracies won’t trust it because it’s coming from RFK’s mouth. And that could be a problem.”

What’s more, the Trump administration is eroding scientists’ ability to probe the safety of pharmaceuticals, said Robert Steinbrook, head of health research at Public Citizen, a nonprofit consumer protection group.

“Public Citizen is very supportive of research on medications that could be linked to diseases,” he said. “But it needs to be through an open process, which looks at scientific evidence, and which doesn’t cherry-pick studies to support a preconceived point of view.”

Steinbrook said the administration has undermined his confidence in the government’s ability to conduct credible work. The Food and Drug Administration has held less than a third the number of advisory committee meetings this year as it did last, meaning fewer opportunities for experts to discuss research on the risks and benefits of drugs. The Trump administration has fired hundreds of career scientists at the CDC and FDA and cut millions of dollars in research funds, including to projects studying autism.

In early September, the CDC issued an unusual contract with the Rensselaer Polytechnic Institute to analyze datasets for signs that vaccinated children were more likely to have autism. Unlike with other research initiatives, the CDC didn’t post an open call for applications in advance. This allows agency experts to review proposals and select studies best designed to answer the question at hand.

CDC researchers told KFF Health News that experts in the agency’s autism and disability group weren’t aware of the contract or asked to review the proposal. That’s important, they said, because researchers digging through data to find clues about autism must show how they’ll rule out biological and environmental exposures that muddy the results, and ensure that children have been accurately diagnosed. One researcher said, “It absolutely looks like Kennedy has subverted the grantmaking process.”

The CDC and HHS did not respond to KFF Health News’ requests for information on the grant, including through a Freedom of Information Act request.

The new vaccine study is separate from Kennedy’s autism data-science initiative, which was posted as an open call at the National Institutes of Health. “The hope is that something good comes of it, and that the government won’t cherry-pick or censor what scientists find out,” Lee said.

Bauer said she didn’t apply to be part of the initiative because of Kennedy’s outsize presence at HHS.

“I would not take his funding because it could take away from the credibility of my study,” she said, “in the same way that taking money from pharmaceutical companies does."

Small local organizations called Active Clubs have spread widely across the U.S. and internationally, using fitness as a cover for a much more alarming mission. These groups are a new and harder-to-detect form of white supremacist organizing that merges extremist ideology with fitness and combat sports culture.

Active Clubs frame themselves as innocuous workout groups on digital platforms and decentralized networks to recruit, radicalize and prepare members for racist violence. The clubs commonly use encrypted messaging apps such as Telegram, Wire and Matrix to coordinate internally. For broader propaganda and outreach they rely on alternative social media platforms such as Gab, Odysee, VK and sometimes BitChute. They also selectively use mainstream sites such as Instagram, Facebook, X and TikTok, until those sites ban the clubs. Active Club members have been implicated in orchestrating and distributing neo-Nazi recruitment videos and manifestos. In late 2023, for instance, two Ontario men, Kristoffer Nippak and Matthew Althorpe, were arrested and charged with distributing materials for the neo-Nazi group Atomwaffen Division and the transnational terrorist group Terrorgram. Following their arrests, Active Club Canada’s public network went dark, Telegram pages were deleted or rebranded, and the club went virtually silent. Nippak was granted bail under strict conditions, while Althorpe remains in custody.As a sociologist studying extremism and white supremacy since 1993, I have watched the movement shift from formal organizations to small, decentralized cells – a change embodied most clearly by Active Clubs.

An investigation by the Canadian Broadcasting Corporation tracks down two Ontario-based Active Clubs that recruit and train young men to fight.

White nationalism 3.0

An actor reconstructs how British broadcaster ITV News infiltrated and secretly filmed inside Active Club England, documenting its recruiting process, activities and goals.

‘You need to learn how to fight’
Active Club messaging glorifies discipline, masculinity and strength – a “warrior identity” designed to attract young men. “The active club is not so much a structural organization as it is a lifestyle for those willing to work, risk and sweat to embody our ideals for themselves and to promote them to others,” Rundo explained via his Telegram channel. “They never were like, ‘You need to learn how to fight so you can beat up people of color.’ It was like, ‘You need to learn how to fight because people want to kill you in the future,’” a former Active Club member told Vice News in 2023.These cells are deliberately small – often under a dozen members – and self-contained, which gives them greater operational security and flexibility. Each club operates semi-autonomously while remaining connected to the broader ideology and digital network.

Expanding globally and deepening ties
Active Clubs maintain strategic and ideological connections with formal white supremacist groups, including Patriot Front, a white nationalist and neofascist group founded in 2017 by Thomas Rousseau after the Unite the Right rally in Charlottesville, Virginia.Active Clubs share extremist beliefs with these organizations, including racial hierarchy and the “Great Replacement” theory, which claims white populations are being deliberately replaced by nonwhite immigrants. While publicly presenting as fitness groups, they may collaborate with white supremacist groups on recruitment, training, propaganda or public events. Figures connected to accelerationist groups – organizations that seek to create social chaos and societal collapse that they believe will lead to a race war and the destruction of liberal democracy – played a role in founding the Active Club network. Along with the Rise Above Movement, they include Atomwaffen Division and another neo-Nazi group, The Base – organizations that repackage violent fascism to appeal to disaffected young white men in the U.S.

Brotherhood as a cover
By downplaying explicit hate symbols and emphasizing strength and preparedness, Active Clubs appeal to a new generation of recruits who may not initially identify with overt racism but are drawn to a culture of hypermasculinity and self-improvement.Anyone can start a local Active Club chapter with minimal oversight. This autonomy makes it hard for law enforcement agencies to monitor the groups and helps the network grow rapidly. Shared branding and digital propaganda maintain ideological consistency. Through this approach, Active Clubs have built a transnational network of echo chambers, recruitment pipelines and paramilitary-style training in parks and gyms.Club members engage in activities such as combat sports training, propaganda dissemination and ideological conditioning. Fight sessions are often recorded and shared online as recruitment tools.Members distribute flyers, stickers and online content to spread white supremacist messages. Active Clubs embed themselves in local communities by hosting events, promoting physical fitness, staging public actions and sharing propaganda. Potential members first see propaganda on encrypted apps such as Telegram or on social media. The clubs recruit in person at gyms, protests and local events, vetting new members to ensure they share the group’s beliefs and can be trusted to maintain secrecy.

From fringe to functioning network
Based on current information from the Global Project Against Hate and Extremism, there are 187 active chapters within the Active Club Network across 27 countries – a 25% increase from late 2023. The Crowd Counting Consortium documented 27 protest events involving Active Clubs in 2022-2023. However, precise membership numbers remain difficult to ascertain. Some groups call themselves “youth clubs” but share similar ideas and aesthetics and engage in similar activities. Active Club members view themselves as defenders of Western civilization and masculine virtue. From their perspective, their activities represent noble resistance rather than hate. Members are encouraged to stay secretive, prepare for societal collapse and build a network of committed, fit men ready to act through infiltration, activism or violence.

Hiding in plain sight
Law enforcement agencies, researchers and civil society now face a new kind of domestic threat that wears workout clothes instead of uniforms.Active Clubs work across international borders, bound by shared ideas and tactics and a common purpose. This is the new white nationalism: decentralized, modernized, more agile and disguised as self-improvement. What appears to be a harmless workout group may be a gateway to violent extremism, one pushup at a time.

Art Jipson, Associate Professor of Sociology, University of Dayton This article is republished from The Conversation under a Creative Commons license. Read the original article.

ST. LOUIS — Lying on top of an operating room table with his chest exposed, Larry Black Jr. was moments away from having his organs harvested when a doctor ran breathlessly into the room.

“Get him off the table,” the doctor recalled telling the surgical team at SSM Health Saint Louis University Hospital as the team cleaned Black’s chest and abdomen. “This is my patient. Get him off the table.”

At first, no one recognized Zohny Zohny in his surgical mask. Then he told the surgical team he was the neurosurgeon assigned to Black’s case. Stunned by his orders, the team members pushed back, Zohny said, explaining that they had consent from the family to remove Black’s organs.

“I don’t care if we have consent,” Zohny recalled telling them. “I haven’t spoken to the family, and I don’t agree with this. Get him off the table.”

Black, his 22-year-old patient, had arrived at the hospital after getting shot in the head on March 24, 2019. A week later, he was taken to surgery to have his organs removed for donation — even though his heart was beating and he hadn’t been declared brain-dead, Zohny said.

Black’s sister Molly Watts said the family had doubts after agreeing to donate Black’s organs but felt unheard until the 34-year-old doctor, in his first year as a neurosurgeon, intervened.

Today, Black, now 28, is a musician and the father of three children. He still needs regular physical therapy for lingering health issues from the gun injury. And Black said he is haunted by what he remembers from those days while he was lying in a medically induced coma.

“I heard my mama yelling,” he recalled. “Everybody was there yelling my name, crying, playing my favorite songs, sending prayers up.”

He said he had tried to show everyone in his hospital room that he heard them. He recalled knocking on the side of the bed, blinking his eyes, trying to show that he was fighting for his life.

Organ transplants save a growing number of lives in the U.S. every year, with more than 48,000 transplants performed in 2024, according to the Organ Procurement and Transplantation Network, which oversees the nation’s transplant system. And thousands die awaiting donations that never come.

But organ donation has also faced ongoing criticism, including reports of patients showing alertness before planned organ harvesting. The results of a federal investigation into a Kentucky organ donation nonprofit, first disclosed by The New York Times in June, found that during a four-year period, medical providers had planned to harvest the organs of 73 patients despite signs of neurological activity. Those procedures ultimately didn’t take place, but federal officials vowed in July to overhaul the nation’s organ donation system.

“Our findings show that hospitals allowed the organ procurement process to begin when patients showed signs of life, and this is horrifying,” Health and Human Services Secretary Robert F. Kennedy Jr. said in a statement. “The entire system must be fixed to ensure that every potential donor’s life is treated with the sanctity it deserves.”

Even before this latest investigation, Black’s case showed Zohny that the organ donation system needed to improve. He was initially hesitant to talk to KFF Health News when contacted in July about Black. But Zohny said his patient’s story had stuck with him for years, highlighting that while organ donation must continue, little is understood about human consciousness. And determining when someone is dead is the critical but confusing question at play.

“There was no bad guy in this. It was a bad setup. There’s a problem in the system,” he said. “We need to look at the policies and make some adjustments to them to make sure that we’re doing organ donation for the right person at the right time in the right place, with the right specialists involved.”

LJ Punch, a former trauma surgeon who was not involved with the case but reviewed Black’s medical records for KFF Health News, questioned whether Black’s injury — from gunfire — possibly contributed to how he was treated. Young Black men like Larry Black are disproportionately victims of gun trauma in the United States, and research on such violence is scant. His experience exemplifies “the general neglect” of Black men’s bodies, Punch said.

“That’s what comes up for me,” Punch said. “Structurally, not individually. Not any one doctor, not any one nurse, not any one team. It’s a structural reality.”

The hospital declined to comment on the details of Black’s case. SSM Health’s Kim Henrichsen, president of Saint Louis University Hospital and St. Mary’s Hospital-St. Louis, said the hospital system approaches “all situations involving critical illness or end-of-life care with deep compassion and respect.”

Mid-America Transplant, the federally designated organ procurement organization serving the St. Louis region, does not comment on individual donor cases, according to Lindsey Speir, executive vice president for organ procurement. She did tell KFF Health News that her organization has walked away from cases when patients’ conditions change — though not as late as when they are in the operating room for harvesting.

“Let me be clear about that. It happens way before then,” she said. “It definitely happens multiple times a year where we get consent. The family has made the decision, we approach, we get consent, it’s all appropriate, and then a day or so later they improve and we’re like, ‘Whoa.’”

But Speir said the recent media stories about the nation’s donation system are prompting a lot of questions about a process that also does a lot of good.

“We’re losing public trust right now,” Speir said of the industry. “And we’re going to have to regain that.”

Blink Twice for a Chance at Life

It was a Sunday afternoon when gunshots rang out in downtown St. Louis. Black had been on his way to his sister’s apartment.

“I didn’t know I was shot at first,” Black said, sitting in his living room six years later. “I literally ran like a block or two away.”

He collapsed moments later, he said, crawling to the back door of a woman’s home, where he asked for help. He said he asked the woman to give him two large towels, one covered in rubbing alcohol and another soaked with hydrogen peroxide. He wrapped those towels around the back of his head.

When his sister Macquel Payne found him, he was lying on the ground near the leasing office of her apartment complex, a crowd gathered around him.

Before an ambulance took him to the hospital, Black told his sister not to worry about him.

“I’m hearing Larry say, ‘I’m good, sis,’” Payne recalled. “‘I’m OK.’”

Black said he went in and out of consciousness on the way to the hospital and once he was there.

“I got to hitting my hand on the side of the ICU bed,” Black said. “They was like: ‘That’s just the reaction, the side effects of the medicine. Ask him some questions.’”

Payne said she asked her brother to blink twice if he could remember his first pet, a dog named “Little Black” that looked like the Chihuahua from the Taco Bell commercials.

Black said he remembers blinking twice. His sisters remember the same.

Payne asked him another question. This time she wanted to know whether her brother recognized their family. Black said he blinked twice when he saw his mom and sister standing nearby.

Black said his sister then asked him “the main question” that everyone needed him to answer.

“She’s like, ‘If you want them to pull a plug, if you tired and you giving up, blink once,’” Black recalled. “‘If you still got some fight in you, blink more than once.’”

Black said he started blinking and hit the bed to let his family know that he was still with them.

The sisters said hospital staffers told them the movements were involuntary.

‘Not Right Now’

In a waiting room steps away from the hospital’s intensive care unit, a woman carrying brochures explained to Payne and the rest of the family that Black had identified himself as a possible organ donor on his ID.

The woman wanted to know whether the family wished to move forward with the process if Black died, Payne said.

“I remember my mom saying, ‘Not right now,’” Black’s sister recalled. “‘It’s kind of too soon.’”

Payne said the woman persisted.

“She was like, ‘Well, can I at least leave you some brochures or something?’” Payne recalled. “Then my mom got a little agitated because it felt like she was being, like, pushy.”

The family was already acquainted with the organ donation process. In 2007, Black’s teenage brother Miguel Payne drowned at a local lake. His organs were donated, Macquel Payne said, noting the family was told that his body parts and tissues helped multiple people.

“I believe in saving lives,” Payne said. “But don’t be pushy about it.”

Mid-America Transplant handles the organ transplant process for 84 counties in parts of Illinois, Arkansas, and Missouri, including St. Louis. Like the Kentucky organization, it is one of 55 federally designated nonprofits that facilitate organ donations throughout the country.

The nonprofit has never pressured a family into organ donation, Speir said. Registering to be an organ donor is legally binding, she said, but Mid-America has walked away from cases when families didn’t want to move forward.

She said her staff tries to dispel myths about organ donation and alleviate concerns. “We want to have the families leave with a positive experience,” Speir said.

Despite the family’s initial ambivalence, they ultimately consented to moving forward with donating Black’s organs. Watts said members of her brother’s care team had told the family that her brother was at “the end of the road.”

The family was told to prepare for Black’s “last walk of life,” Payne said. Also known as an honor or hero’s walk, the tradition honors the life of an organ donor before the harvesting process begins.

At the time, Payne said, she thought her brother still had a fighting chance. She asked the hospital staffers to take another look at him before he was wheeled down the hall.

“I’m like, ‘My brother’s in there tapping on the bed,’” Payne said. “They said, ‘That’s just his nerves.’ But I’m like, ‘No, something’s not right.’ It’s like he was too alert. He was letting us know: ‘Please don’t let them do this to me. I’m here. I can fight this.’ They were saying that’s what the medicine will do, it affects his nerves.”

After the family had agreed to move forward with the organ donation process, the two sisters said, an especially helpful member of Black’s medical team no longer treated them the same way. She became standoffish, they said.

“You could tell the dynamics had changed,” Watts said.

‘#RIPMyBrother’

The family put on blue jumpers for the walk of life. “We just walked around the floor, and everybody was, like, acknowledging him,” Payne said. “We just thought this was the end.”

A friend Black went to high school with filmed part of the ritual. In a short clip, Black is seen being wheeled on a stretcher down a hallway in the hospital. His eyes are half-open. People are crying.

False rumors then started to swirl outside the hospital.

Brianna Floyd said she went into shock when she heard that her friend was dead. She knew that Black had been shot in the head. But a few days earlier, a local newspaper had reported that he was in stable condition.

Floyd checked Facebook to see whether the news of his death was true. Her timeline was flooded with farewell posts for Black, so she decided to write one, too.

“I Love You So Much Brother,” Floyd wrote. “#RIPMyBrother. Never Thought I Would Say That.”

Black’s father rushed to the hospital when he heard a rumor that his son was being wheeled to the morgue.

“‘He’s gone,’” Lawrence Black Sr. recalled being told. “‘He’s going to the freezer now.’”

Black Sr. said he refused to believe that his son was dead. The thought was devastating. He had already experienced that kind of loss to gun violence.

“You wake up and nothing’s the same,” Black Sr. said. “The spirit is lingering for about a week, and you can feel it, you know?”

Overwhelmed with emotion, he prayed for his son to live.

‘I Can’t Kill Your Son’

Zohny, the neurosurgeon, said he heard an announcement about a “hero’s walk” over a loudspeaker in the hospital. He wasn’t familiar with the term, so he asked about it. Medical residents in the hospital explained and told Zohny that the walk was possibly for his patient Larry Black.

“No, that can’t be my patient,” Zohny said he told them. “I didn’t agree.”

That’s when Zohny called the ICU to check on Black’s status. A person who answered the phone told him that Black was being wheeled to an operating room, he said.

“This is my first year,” Zohny said. “Your first year out as a neurosurgeon is the riskiest time for you. Any mistakes, anything small, basically derails your career. So the moment this happened, my legs went weak and I was very nervous because, at the end of the day, your job as a doctor is to be perfect.”

KFF Health News, Zohny, and Punch all reviewed the medical files given to Black from his hospitalization. It’s not clear from the records what led to that moment.

“In every case, the patient must be declared legally dead by the hospital’s medical team before organ procurement begins. This is not negotiable,” Mid-America Transplant’s CEO and president, Kevin Lee, wrote in an Aug. 21 blog post on the nonprofit’s website, responding to the news and federal comments about the investigation centered in Kentucky. “Mid-America Transplant strictly follows all laws, regulations, and hospital protocols throughout the process.”

He said in a statement to KFF Health News that a person can be pronounced dead in two ways. A person is legally dead if their heart stops beating and they stop breathing, which is when donation after cardiac death can occur. A person can also become an organ donor if their brain, including the brain stem, has irreversibly ceased functioning, which is when brain death donation can occur.

“Every hospital has their own process in declaring both types of death,” Speir said in a statement. “Mid-America Transplant ensures hospitals follow their policies.”

But Black didn’t fall into either category, Zohny said. And, he said, Black hadn’t had what is known as a brain death exam.

Zohny said he immediately informed his chairman about the situation, then started running to the operating room. Black’s family was waiting in the hallway, unaware of the drama happening behind a set of closed silver doors.

Then Zohny emerged, pulling Black’s family into an empty operating room that was nearby.

“I remember he told my mama, ‘I can’t kill your son,’” Payne recalled. “She said, ‘Excuse me?’”

Zohny put an image of Black’s brain on a screen. Then he circled the part of his brain that was damaged. He explained that Black’s gunshot wound was something that he could possibly recover from, though he might need therapy. He asked the family whether they were willing to give Black more time to heal from the injury, instead of withdrawing care.

“In my opinion, no family would ever consent to organ donation unless they were given an impression that their family member had a very poor prognosis,” Zohny said. “I never had a conversation with the family about the prognosis, because it was too early to have that discussion.”

Zohny knew that he was taking a professional risk when he ran into the operating room.

“The worst-case scenario for me is that I lose my job,” he recalled thinking. “Worst-case scenario for him, he wrongfully loses his life.”

Later, Zohny said, a hospital worker who transported Black from the ICU to the operating room told Zohny that something had seemed off.

 “I remember him looking at me and saying, ‘I’m so glad you stopped that,’” Zohny recalled. “And I said, ‘Why?’ And he said: ‘I don’t know. His eyes were open the whole time, and I just felt like he was looking at me. His eyes didn’t move, but it felt like he was looking at me.’”

‘Back From the Dead’

After Zohny’s intervention, Black was wheeled back to the ICU. Zohny said the medical team held back all medications that caused his sedation.

Black woke up two days later, Zohny said, and started speaking. Within a week, the neurosurgeon said, he was standing.

“I had to learn how to walk, how to spell, read,” Black said. “I had to learn my name again, my Social, birthday, everything.”

Zohny continued to care for Black during what remained of his 21 days in the hospital. During a follow-up appointment, he posed for a photo with Black and his older sister, Watts. Next to Zohny, Black is standing up, a brace on his leg.

“It’s a miracle that despite flawed policy we were able to save his life,” Zohny said. “It was an absolute miracle.”

Zohny, who was working as a fellow and assistant professor at the time, left Saint Louis University Hospital for another job later that year when his fellowship ended. He said Black’s story made him question what we know about consciousness.

He’s now working on a new method that quantifies consciousness. Zohny said it could possibly be used to help measure consciousness from brain signals, such as with an electroencephalogram, or EEG, a test that measures electrical activity in the brain. Zohny said his method still needs rigorous validation, so he recently started a medical research company called Zeta Analytica, separate from his work at the West Virginia University Rockefeller Neuroscience Institute, which he’ll begin in October.

“We don’t understand the brain to the level that we should, especially with all of the technology we have now,” Zohny said.

Today, Black is trying to move forward. He said he has seizures if the bullet fragments in his head move around too much. He said he easily overheats because of the injury.

He doesn’t blame his family for their decision. But he questions the organ transplantation process. “It’s like they choose people’s destiny for them just because they have an organ donor ribbon on their ID,” Black said. “And that’s not cool.”

To help him process everything that happened to him in 2019, he makes music under the name BeamNavyLooney. “I am back from the dead,” he recently wrote in a song about his experience.

Earlier this year, Black celebrated the birth of another son, who was sleeping peacefully at home as Black recounted his story.

“He doesn’t really cry,” Black said. “He just makes noises.”

Black sat with a firearm within reach. He said he keeps the gun close to protect his family. It’s still hard for him to sleep at night. Nightmares about what happened — both on the street and in the hospital — keep him awake.

He said he no longer wants to be on the organ donor registry.

As Republican lawmakers attempt to rebrand the budget law that slashed $1 trillion for Medicaid to help pay for tax cuts for the rich—unable to ignore the blaring message from angry town hall participants and polls showing Americans do not support the so-called One Big Beautiful Bill Act—research released Friday suggests the GOP should brace for even more outrage from voters across the country.

According to the analysis by the Center for American Progress (CAP), no state or congressional district will be spared from the cuts the OBBBA makes to healthcare, and every district in the US is projected to see a rise in the number of uninsured people by 2034.

"Every member of Congress, regardless of party or geography, will see tens of thousands of their constituents lose coverage under this law," said the group.

CAP's report builds on analysis from the nonpartisan Congressional Budget Office (CBO), which found last month that the law's Medicaid work requirements, expiration of the Affordable Care Act's enhanced premium tax credits, and termination of reforms that benefit low-income Medicare beneficiaries will increase the number of uninsured Americans by 14.2 million over the next decade.

"Families, communities, and health systems nationwide will feel the consequences of these cuts."

The center-left think tank also expanded on a subsequent KFF report that showed how the 14.2 million figure would be spread out across states, finding that the uninsured rate would rise by at least 3% in 34 states and Washington, DC.

CAP's district-by-district analysis found that congressional districts will have an average of 33,000 more people who are uninsured by 2034 due to the OBBBA's healthcare provisions. Those with more than 30% of their under-65 population enrolled in Medicaid are projected to see particularly large increases in the number of uninsured constituents, with Democratic Rep. Yassamin Ansari's district in Arizona expected to have about 80,000 more uninsured residents by 2034—the most of any district in the country.

Ansari launched an "Accountability Summer" town hall tour in her state in July, holding events in Republican-led districts where she spoke with Arizonans about how their "Republican representatives have failed" them by supporting the OBBBA, in some cases after having expressed concerns about the impact it would have on their constituents.

One district Ansari visited, represented by Rep. Eli Crane (R-Ariz.), is also among the districts expected to see a major increase in the number of uninsured residents, at 54,000.

Other Republicans are expected see people they represent lose their coverage in large numbers due to the law, including Reps. Daniel Newhouse (R-Wash.) and Hal Rogers (R-Ky.). About 66,000 of Newhouse's constituents are projected to lose coverage, along with 64,000 of people in Rogers' district.

Rep. Randy Fine (R-Fla.), who touted the OBBBA as a "generational win for working families," will see 54,000 of his constituents lose their insurance, according to CAP.

The think tank found that California, Florida, and Texas will have the highest increases in their uninsured population, with more than 1 million people in each state losing coverage.

The losses caused by the OBBBA are projected to reverse "more than a decade of progress in expanding coverage," said CAP.

"Every lawmaker will see thousands of constituents lose coverage under this law," added the group. "Families, communities, and health systems nationwide will feel the consequences of these cuts."

In addition to attempting to reframe the OBBBA to boost its popularity, some Republicans are attempting to backpedal on the provision ending ACA tax credits that have helped millions of Americans afford their health coverage, which is scheduled to go into effect at the end of the year.

Reps. Tom Kean Jr. (R-NJ), Rob Bresnahan (R-Penn.), and Juan Ciscomani (R-Ariz.) have proposed a bill to extend the credits for one year, hoping to delay until after the midterm elections the provision that could cause some monthly premiums to skyrocket by 75% and leave more than 4 million Americans without health coverage.

"Congressional Republicans voted to rip health coverage from millions of Americans. They don't get brownie points for attempting to kick the can down the road on their own harmful and unpopular agenda because it's convenient for them," said Leor Tal, campaign director for Unrig Our Economy.

"If Republicans in Congress were serious about protecting people's care," added Tal, "they would vote to make these vital healthcare tax credits permanent and they wouldn't have passed the largest cut to Medicaid in history to pay for tax breaks for billionaires."

NOW READ: Trump's horrific cult contains the seeds of its own destruction

Public health and access to lifesaving vaccines are on the line in a high-stakes leadership battle at the Centers for Disease Control and Prevention.

Health and Human Services Secretary Robert F. Kennedy Jr.’s push to fire CDC director Susan Monarez is more than an administrative shake-up. The firing marks a major offensive by Kennedy to seize control of the agency and impose an anti-vaccine, anti-science agenda that will have profound effects on the lives and health of all Americans, public health leaders say.

Kennedy wants to see the Pfizer and Moderna messenger RNA-based covid-19 vaccines pulled from the market, according to two people familiar with the planning who asked not to be identified because they’re not authorized to speak to the press. He’s also set his sights on restricting or halting access to some pediatric immunizations, some public health leaders say.

His actions have already reduced federal help to states, creating the potential for more infectious disease outbreaks and incidences of foodborne illness. Some public health leaders say they expect Kennedy will use the CDC to publicize health information that isn’t grounded in science.

“It’s crazy season,” said Richard Besser, former acting CDC director during the Obama administration. “People want information they can trust to make critical decisions about their health. Until now, we’ve been able to say look at the CDC. Unfortunately, we’re not able to do that anymore.”

HHS spokesperson Emily Hilliard disputed the criticism.

“Secretary Kennedy remains firmly committed to delivering on President Trump’s promise to Make America Healthy Again, dismantling the failed status quo that fueled a nationwide chronic disease epidemic and eroded public trust in our public health institutions,” Hilliard said in a statement.

White House spokesperson Kush Desai said Kennedy and Commissioner of Food and Drugs Marty Makary have reiterated that covid shots will remain available for Americans who need and want them.

“The Trump administration is restoring Gold Standard Science as the sole guiding principle of health decision-making,” Desai said in an email. “Only the Fake News could ignore these facts to continue pushing Democrat talking points and hysteria.”

Behind the Ouster

The shake-up began last week, when Kennedy sought to fire Monarez, a microbiologist who’d just been confirmed by the Senate in July. She refused to leave the position, and her lawyers said Kennedy sought to oust her because she wouldn’t fire senior staff or follow unscientific directives. Four top career officials at the CDC resigned on Aug. 27 in protest.

Career staffers at the CDC and some public health groups had hoped President Donald Trump would intervene and put the brakes on Kennedy. Instead, the White House backed Kennedy, saying Monarez was fired.

Trump on Sept. 1 demanded that drug companies show that covid vaccines work, in a further sign he’s not set on defending the shots.

“I hope OPERATION WARP SPEED was as ‘BRILLIANT’ as many say it was. If not, we all want to know about it, and why???” Trump said on Truth Social.

Operation Warp Speed was the initiative that Trump himself announced in 2020 to accelerate the development of covid vaccines, including the Pfizer and Moderna shots. The vaccines have proved safe and effective in multiple clinical trials; a study published in JAMA Health Forum estimated that they saved about 2.5 million lives worldwide.

CDC staffers are worried the agency’s next director won’t fight for science, according to an employee who asked not to be identified for fear of professional retaliation.

Trump’s support for Monarez’s ouster was a watershed moment that signaled there are no checks on Kennedy and his agenda, public health advocates say. Leading congressional Democrats such as Senate Minority Leader Chuck Schumer called for Kennedy’s firing. Hundreds of HHS staffers have also implored Congress to intervene, saying Kennedy threatens science and public health. He is slated to testify Sept. 4 before the Senate Finance Committee.

Kennedy said in a message to CDC staff that his focus is on boosting the agency’s reputation and leadership. The Atlanta-based agency was already reeling after the Trump administration pushed out thousands of its staff and a gunman who reportedly believed the covid vaccine had caused him health problems fired hundreds of rounds at its campus last month, killing a police officer.

“The CDC must once again be the world’s leader in communicable disease prevention. Together, we will restore trust,” Kennedy wrote. “Together, we will rebuild this institution into what it was always meant to be: a guardian of America’s health and security.” He said his deputy, Jim O’Neill, would serve as acting CDC director.

Nine former CDC directors or acting directors who served under both Republicans and Democrats criticized Kennedy in the aftermath of the Monarez firing, saying in an op-ed in The New York Times that the impact on public health is “unacceptable, and it should alarm every American, regardless of political leanings.”

HHS spokesperson Hilliard took exception with this point, listing four covid vaccines that continue to get the nod for use.

However, the Food and Drug Administration last

week approved updated covid mRNA boosters only for people 65 or older and others at high risk of complications. The CDC has also stopped recommending the shots for healthy children and pregnant women. Previously, the shots had been advised for anyone 6 months or older.

As a result, many people who don’t meet the criteria but want the vaccine will have to get prescriptions or consult with their doctors. Insurance may not always cover the shots, which can run around $200. Major drugstores such as Walgreens and CVS have said the shots may not be available at all pharmacies and may require a prescription.

The American Academy of Pediatrics on Aug. 19 broke with the administration, recommending that all young children get the covid vaccine. Insurance still may not cover the cost in some cases and parents could face obstacles in getting the vaccines without a prescription.

Next Move: The Advisory Committee

Kennedy and his team changed official covid vaccine recommendations even though there have been no new safety issues. A dose of the 2023-24 covid mRNA vaccine prevented significant illness and death across all age groups, according to a study published in August led by a University of Michigan researcher. The virus killed about 1,000 people a week in the U.S. in mid-January, and cases are rising again and expected to accelerate this winter.

Kennedy has handpicked a vaccine advisory committee for the CDC that is reviewing mRNA-based covid vaccines, which he falsely claimed in 2021 were “the deadliest vaccine ever made.” The covid vaccine review is being led by Retsef Levi, a professor of operations management at the Massachusetts Institute of Technology who has said without evidence that the shots cause serious harm, including death. If the committee recommends against them, Kennedy and the FDA could then begin the process of removing them from the market.

Taking mRNA-based covid shots off the market would leave consumers with fewer options for protection. Paxlovid, an antiviral medication that treats the infection in high-risk adults, would be available.

The CDC advisory committee reviewing the covid shots is also probing a long-debunked link between aluminum, used in many childhood immunizations such as those for hepatitis A and pneumonia, and autism or allergies.

The group’s findings are expected to support the erroneous link, some public health officials say. HHS could then require drugmakers to undertake costly reformulations of the shots or stop manufacturing them altogether.

“That would set up the elimination of all childhood vaccines,” Besser said.

The advisory group’s next meeting is set for Sept. 18, although Sen. Bill Cassidy (R-La.) has called for the meeting to be indefinitely delayed. Cassidy, a physician who chairs the Senate Health, Education, Labor and Pensions Committee, voted for Kennedy’s confirmation as HHS secretary after receiving assurances, he said, that the longtime vaccine opponent wouldn’t disrupt the U.S. vaccination system. Kennedy’s promises, Cassidy said, included that he wouldn’t change the CDC’s Advisory Committee on Immunization Practices.

Kennedy removed all of the panel’s members in June and replaced them with his own appointees, including anti-vaccine activists.

Kennedy’s move to put his stamp on the CDC means states that have long relied on the agency’s expertise and help in crises such as disease outbreaks will largely be left to fend for themselves, said Ashish Jha, who served as President Joe Biden’s covid response coordinator from 2022 to 2023.

“States are going to be left on their own,” Jha said. “States will struggle with the CDC incapable and dysfunctional. Our system is not designed for states to go it alone.”

The CDC typically plays a critical role by assisting states with disease surveillance, public health interventions, and outbreak response, especially when a crisis spills across state lines. An outbreak of measles this year led to more than 1,400 cases nationwide, and states including Texas, where the outbreak was identified, struggled to get help from the CDC.

A CDC program that has long tracked pathogens in food has already reduced the number of hazards it looks for from eight to two, which public health leaders say is making it harder to identify outbreaks. Staff overseeing a CDC program that tracks outdoor pollution that can exacerbate asthma also have been cut.

The agency runs a hotline that doctors around the country can call to get treatment and other types of advice. Under Kennedy’s watch, the CDC has had to pare assistance because of staffing reductions, said Wendy Armstrong, vice president at the Infectious Diseases Society of America.

“Lives are 100% at stake, no question about it,” Armstrong said. “That you can no longer trust the recommendations out of the CDC is just devastating. It’s appalling to think we can’t trust that information is science-based anymore.”

Kennedy wants to shake up CDC leadership because he sees the agency as the heart of corruption and resistance within the federal health bureaucracy, according to people familiar with his planning. Kennedy has said the agency suffers from malaise and bias.

Many public health leaders, however, view the CDC as under siege by an administration they say is corrupting science for its own ends. HHS staffers signed onto a letter that now has more than 6,800 signatures, saying Kennedy is “endangering the nation’s health by repeatedly spreading inaccurate health information.”

Kennedy has also been fending off mounting criticism of his response to the shooting at the CDC’s headquarters. He responded to the attack on social media, hours later, after first posting pictures of himself fly-fishing.

Some younger staffers are considering leaving and some workers feel like the shooting accelerated Kennedy’s overhaul of the agency, the CDC employee said.

With the battle for control of the CDC still raging, public health leaders are now looking to Congress to put the brakes on Kennedy. Some Republican lawmakers have called for a review of Kennedy’s actions.

“These high profile departures will require oversight by the HELP Committee,” Cassidy said Aug. 27 on the social platform X. Cassidy had backed Monarez to lead the agency.

It makes sense to approach some marketing efforts with skepticism. Scams, deepfakes, and deceptive social media posts are common, with people you don’t know seeking to profit from your behavior.

But should people extend this same skepticism to pediatricians who advise vaccines for children? Health and Human Services Secretary Robert F. Kennedy Jr. said financial bonuses are driving such recommendations.

“Doctors are being paid to vaccinate, not to evaluate,” Kennedy said in an Aug. 8 video posted on the social platform X. “They’re pressured to follow the money, not the science.”

Doctors and public health officials have been fielding questions on this topic for years.

A close look at the process by which vaccines are administered shows pediatric practices make little profit — and sometimes lose money — on vaccines. Four experienced pediatricians told us evidence-based science and medicine drive pediatricians’ childhood vaccination recommendations. Years of research and vaccine safety data also bolster these recommendations.

Christoph Diasio, a pediatrician at Sandhills Pediatrics in North Carolina, said the argument that doctors profit off vaccines is counterintuitive.

“If it was really about all the money, it would be better for kids to be sick so you’d see more sick children and get to take care of more sick children, right?” he said.

Is Your Pediatrician Profiting Off Childhood Vaccines?

It costs money to stock, store, and administer a vaccine.

Pediatricians sometimes store thousands of dollars’ worth of vaccines in specialized medical-grade refrigeration units, which can be expensive. They pay to insure vaccines in case anything happens to them. Some practices buy thermostats that monitor vaccines’ temperature and backup generators to run the refrigerators in the event of a power outage. They also pay nursing staff to administer vaccines.

“Vaccines are hugely expensive,” said Jesse Hackell, a retired general pediatrician and the chair of the American Academy of Pediatrics’ Committee on Pediatric Workforce. “We lay out a lot of money up front.”

When a child with private insurance gets a vaccine, the pediatrician is paid for the vaccine product and its administration, Hackell said.

Many pediatricians also participate in a federal program that provides vaccines free of charge to eligible children whose parents can’t afford them. Participating in that program isn’t profitable because even though they get the vaccines for free, pediatricians store and insure them, and Medicaid reimbursements often don’t cover the costs. But many choose to participate and provide those vaccines anyway because it’s valuable for patients, Hackell said.

When discussing vaccine recommendations, pediatricians don’t make different recommendations based on how or if a child is insured, he said.

Jason Terk, a pediatrician at Cook Children’s Health Care System in Texas, said a practice’s ability to make a profit on vaccines depends on its situation.

Terk’s practice is part of a larger pediatric health care system, which means it doesn’t lose money on vaccines and makes a small profit, he said. Some small independent practices might not be able to secure terms with insurance companies that adequately pay for vaccines.

Suzanne Berman, a pediatrician at Plateau Pediatrics, a rural health clinic in Crossville, Tennessee, said that 75% of her practice’s patients have Medicaid and qualify for the Vaccines for Children program, which the practice loses money on. When she factored in private insurance companies’ payments, she estimated her practice roughly breaks even on vaccination.

“The goal is to not lose money on vaccines,” Terk said.

So What’s Driving Your Pediatrician’s Vaccine Recommendations?

Pediatricians typically recommend parents vaccinate their children following either the American Academy of Pediatrics’ or the Centers for Disease Control and Prevention’s recommended vaccine schedule.

Diasio said the driving force behind pediatric vaccine recommendations is straightforward: Trained physicians have seen kids die of vaccine-preventable diseases.

“I saw kids who died of invasive pneumococcal disease, which is what the Prevnar vaccine protects against,” Diasio said. “We remember those kids; we wouldn’t wish that on anyone.”

Still, your pediatrician will consider your child’s health holistically before making vaccine recommendations.

For example, a few children — less than 1% — have medical reasons they cannot receive a particular vaccine, Hackell said. This could include children with severe allergies to certain vaccine components or children who are immunosuppressed and could be at higher risk from live virus vaccines such as the measles or chickenpox vaccine.

“When people have questions about whether their kids should get vaccines, they really need to talk to their child’s doctor,” Diasio said. “Don’t get lost down a rabbit hole of the internet or on social media, which is programmed and refined to do whatever it can to keep you online longer.”

The Trump administration’s cuts to Centers for Disease Control and Prevention funding for state and local health departments had vastly uneven effects depending on the political leanings of a state, according to a KFF Health News analysis. Democratic-led states and select blue-leaning cities fought back in court and saw money for public health efforts restored — while GOP-led states sustained big losses.

The Department of Health and Human Services in late March canceled nearly 700 Centers for Disease Control and Prevention grants nationwide — together worth about $11 billion. Awarded during the covid-19 pandemic, they supported efforts to vaccinate people, reduce health disparities among demographic groups, upgrade antiquated systems for detecting infectious disease outbreaks, and hire community health workers.

Initially, grant cancellations hit blue and red states roughly evenly. Four of the five jurisdictions with the largest number of terminated grants were led by Democrats: California, the District of Columbia, Illinois, and Massachusetts.

But after attorneys general and governors from about two dozen blue states sued in federal court and won an injunction, the balance flipped. Of the five states with the most canceled grants, four are led by Republicans: Texas, Georgia, Oklahoma, and Ohio.

In blue states, nearly 80% of the CDC grant cuts have been restored, compared with fewer than 5% in red states, according to the KFF Health News analysis. Grant amounts reported in an HHS database known as the Tracking Accountability in Government Grants System, or TAGGS, often don’t match what states confirmed. Instead, this analysis focused on the number of grants.

The divide is an example of the polarization that permeates health care issues, in which access to safety-net health programs, abortion rights, and the ability of public health officials to respond to disease threats diverge significantly depending on the political party in power.

In an emailed statement, HHS spokesperson Andrew Nixon said the agency “is committed to protecting the health of every American, regardless of politics or geography. These funds were provided in response to the COVID pandemic, which is long over. We will continue working with states to strengthen public health infrastructure and ensure communities have the tools they need to respond to outbreaks and keep people safe.”

The money in question wasn’t spent solely on covid-related activities, public health experts say; it was also used to bolster public health infrastructure and help contain many types of viruses and diseases, including the flu, measles, and RSV, or respiratory syncytial virus.

“It really supported infrastructure across the board, particularly in how states respond to public health threats,” said Susan Kansagra, chief medical officer of the Association of State and Territorial Health Officials.

The Trump cutbacks came as the U.S. recorded its largest measles outbreak in over three decades and 266 pediatric deaths during the most recent flu season — the highest reported outside of a pandemic since 2004. Public health departments canceled vaccine clinics, laid off staff, and put contracts on hold, health officials said in interviews.

After its funding cuts were blocked in court, California retained every grant the Trump administration attempted to claw back, while Texas remains the state with the most grants terminated, with at least 30. As the CDC slashed grants in Texas, its measles outbreak spread across the U.S. and Mexico, sickening at least 4,500 people and killing at least 16.

Colorado, which joined the lawsuit, had 11 grant terminations at first, but then 10 were retained. Meanwhile, its neighboring states that didn't sue — Wyoming, Utah, Kansas, Nebraska, and Oklahoma — collectively lost 55 grants, with none retained.

In Jackson, Ohio, a half-dozen community health workers came to work one day in March to find the Trump administration had canceled their grant five months early, leaving the Jackson County Health Department half a million dollars short — and them without jobs.

“I had to lay off three employees in a single day, and I haven’t had to do that before. We don’t have those people doing outreach in Jackson County anymore,” Health Commissioner Kevin Aston said.

At one point, he said, the funding helped 11 Appalachian Ohio counties. Now it supports one.

Marsha Radabaugh, one employee who was reassigned, has scaled back her community health efforts: She’d been helping serve hot meals to homeless people and realized that many clients couldn’t read or write, so she brought forms for services such as Medicaid and the Supplemental Nutrition Assistance Program to their encampment in a local park and helped fill them out.

“We would find them rehab places. We’d get out hygiene kits, blankets, tents, zero-degree sleeping bags, things like that,” she said. As a counselor, she’d also remind people “that they're cared for, that they're worthy of being a human — because, a lot of the time, they're not treated that way.”

Sasha Johnson, who led the community health worker program, said people like Radabaugh “were basically a walking human 411,” offering aid to those in need.

Radabaugh also partnered with a food bank to deliver meals to homebound residents.

Ashton said the abrupt way they lost the funds — which meant the county unexpectedly had to pay unemployment for more people — could have ruined the health district financially. Canceling funding midcycle, he said, “was really scary.”

HHS Secretary Robert F. Kennedy Jr., a longtime anti-vaccine activist and promoter of vaccine misinformation, has called the CDC a “cesspool of corruption.” At HHS, he has taken steps to undermine vaccination in the U.S. and abroad.

Federal CDC funding accounts for more than half of state and local health department budgets, according to KFF, a health information nonprofit that includes KFF Health News. States that President Donald Trump won in the 2024 election received a higher share of the $15 billion the cCDC allocated in fiscal 2023 than those that Democrat Kamala Harris won, according to KFF.

The Trump administration’s nationwide CDC grant terminations reflect this. More than half were in states that Trump won in 2024, totaling at least 370 terminations before the court action, according to KFF Health News’ analysis.

The Columbus, Ohio, health department had received $6.2 million in CDC grants, but roughly half of it — $3 million — disappeared with the Trump cuts. The city laid off 11 people who worked on investigating infectious disease outbreaks in such places as schools and nursing homes, Columbus Health Commissioner Mysheika Roberts said.

She also said the city had planned to buy a new electronic health record system for easier access to patients’ hospital records — which could improve disease detection and provide better treatment for those infected — but that was put on ice.

“We’ve never had a grant midcycle just get pulled from us for no reason,” Roberts said. “This sense of uncertainty is stressful.”

Columbus did not receive its money directly from the CDC. Rather, the state gave the city some funds it received from the federal government. Ohio, led by Republican Gov. Mike DeWine and a Republican attorney general, did not sue to block the funding cuts.

Columbus sued the federal government in April to keep its money, along with other Democratic-led municipalities in Republican-governed states: Harris County, Texas, home to Houston; the Metropolitan Government of Nashville and Davidson County in Tennessee; and Kansas City, Missouri. A federal judge in June blocked those cuts.

As of mid-August, Columbus was awaiting the funds. Roberts said the city won’t rehire staff because the federal funding was expected to end in December.

Joe Grogan, a senior scholar at the University of Southern California’s Schaeffer Institute and former director of the White House Domestic Policy Council in Trump’s first term, said state and local agencies “are not entitled” to the federal money, which was awarded “to deal with an emergency” that has ended.

“We were throwing money out the door the last five years,” Grogan said of the federal government. “I don’t understand why there would ever be a controversy in unspent covid money coming back.”

Ken Gordon, Ohio Department of Health spokesperson, wrote in an email that the $250 million in grants lost had helped with, among other things, upgrading the disease reporting system and boosting public health laboratory testing.

Some of the canceled HHS funding wasn’t slated to end for years, including four grants to strengthen public health in Indian Country, a grant to a Minnesota nonprofit focused on reducing substance use disorders, and a few to universities about occupational safety, HIV, tuberculosis, and more.

Brent Ewig, chief policy and government relations officer for the Association of Immunization Managers, said the cuts were “the predictable result of ‘boom, bust, panic, neglect’ funding” for public health.

The association represents 64 state, local, and territorial immunization programs, which Ewig said will be less prepared to respond to disease outbreaks, including measles.

“The system is blinking red,” Ewig said.

Methodology

KFF Health News’ analysis of Centers for Disease Control and Prevention grants sought to answer four questions: 1) How many grants have been terminated in the U.S. under the Trump administration since March? 2) Which states saw the most grants cut? 3) What were the grants for? and 4) Did the grant terminations affect blue, red, and purple states differently? This follows a similar analysis by KFF Health News for an article on nationwide NIH grant terminations.

Our primary data source was a Department of Health and Human Services website showing grant terminations. We compared an initial list of grant terminations from April 3 with one from July 11 to determine how many grants had been restored. The USAspending.gov database helped us track grants by state.

To classify states politically, we followed the same steps from our April coverage of National Institutes of Health grant terminations. States were “blue” if Democrats had complete control of the state government or if the majority of voters favored Democratic presidential candidates in the last three elections (2016, 2020, 2024). “Red” states were classified similarly with respect to the Republican Party. “Purple” states had politically split state governments and/or were generally considered to be presidential election battleground states. The result was 25 red states, 17 blue states, and eight purple states. The District of Columbia was classified as blue using similar methods.

This analysis does not account for potential grant reinstatements in local jurisdictions where the funds were awarded indirectly rather than directly from the CDC; it accounts only for the recipients’ location, and excludes grants terminated from Compacts of Free Association states and other foreign entities that received grants directly from the CDC. At least 40 CDC grants were terminated that were meant for global health efforts or assisting public health activities in other nations following the Trump administration’s order for the CDC to withdraw support for the World Health Organization.

As measles surged in Texas early this year, the Trump administration’s actions sowed fear and confusion among CDC scientists that kept them from performing the agency’s most critical function — emergency response — when it mattered most, an investigation from KFF Health News shows.

The outbreak soon became the worst the United States has endured in over three decades.

In the month after Donald Trump took office, his administration interfered with Centers for Disease Control and Prevention communications, stalled the agency’s reports, censored its data, and abruptly laid off staff. In the chaos, CDC experts felt restrained from talking openly with local public health workers, according to interviews with seven CDC officials with direct knowledge of events, as well as local health department emails obtained by KFF Health News through public records requests.

“CDC hasn’t reached out to us locally,” Katherine Wells, the public health director in Lubbock, Texas, wrote in a Feb. 5 email exchange with a colleague two weeks after children with measles were hospitalized in Lubbock. “My staff feels like we are out here all alone,” she added.

A child would die before CDC scientists contacted Wells.

“All of us at CDC train for this moment, a massive outbreak,” one CDC researcher told KFF Health News, which agreed not to name CDC officials who fear retaliation for speaking with the press. “All this training and then we weren’t allowed to do anything.”

Delays have catastrophic consequences when measles spreads in undervaccinated communities, like many in West Texas. If a person with measles is in the same room with 10 unvaccinated people, nine will be infected, researchers estimate. If those nine go about their lives in public spaces, numbers multiply exponentially.

The outbreak that unfolded in West Texas illustrates the danger the country faces under the Trump administration as vaccination rates drop, misinformation flourishes, public health budgets are cut, and science agencies are subject to political manipulation.

While the Trump administration stifled CDC communications, health secretary Robert F. Kennedy Jr. fueled doubt in vaccines and exaggerated the ability of vitamins to ward off disease. Suffering followed: The Texas outbreak spread to New Mexico, Oklahoma, Kansas, Colorado, and Mexico’s Chihuahua state — at minimum. Together these linked outbreaks have sickened more than 4,500 people, killed at least 16, and levied exorbitant costs on hospitals, health departments, and those paying medical bills.

“This is absolutely outrageous,” said Jennifer Nuzzo, director of the Pandemic Center at Brown University. “When you’re battling contagious diseases, time is everything.”

‘The CDC Is “Stressed” Currently’

Wells was anxious the moment she learned that two unvaccinated children hospitalized in late January had the measles. Hospitals are legally required to report measles cases to health departments and the CDC, but Wells worried many children weren’t getting tested.

“I think this may be very large,” she wrote in a Feb. 3 email to the Texas Department of State Health Services. Wells relayed in another email what she’d learned from conversations around town: “According to one of the women I spoke with 55 children were absent from one school on 1/24. The women reported that there were sick children with measles symptoms as early as November.”

In that email and others, Wells asked state health officials to put her in touch with CDC experts who could answer complicated questions on testing, how to care for infants exposed to measles, and more. What transpired was a plodding game of telephone.

One email asked whether clinics could decontaminate rooms where people with measles had just been if the clinics were too small to follow the CDC’s recommendation to keep those rooms empty for two hours.

“Would it be possible to arrange a consultation with the CDC?” Wells wrote on Feb. 5.

“It never hurts to ask the CDC,” said Scott Milton, a medical officer at the Texas health department. About 25 minutes later, he told Wells that an information specialist at the CDC had echoed the guidelines advising two hours.

“I asked him to escalate this question to someone more qualified,” Milton wrote. “Of course, we know the CDC is ‘stressed’ currently.”

Local officials resorted to advice from doctors and researchers outside the government, including those at the Immunization Partnership, a Texas nonprofit.

“The CDC had gone dark,” said Terri Burke, executive director of the partnership. “We had anticipated a measles outbreak, but we didn’t expect the federal government to be in collapse when it hit.”

Technically, the Trump administration’s freeze on federal communications had ended Feb. 1. However, CDC scientists told KFF Health News that they could not speak freely for weeks after.

“There was a lot of confusion and nonanswers over what communications were allowed,” one CDC scientist said.

Georges Benjamin, executive director of the American Public Health Association, said the situation was not unique to measles. “Like most public health organizations, we weren’t able to get ahold of our program people in February,” he said. Information trickled out through the CDC’s communications office, but CDC scientists gave no press briefings and went dark on their closest partners across the country. “The CDC was gagged,” he said.

Through private conversations, Benjamin learned that CDC experts were being diverted to remove information from websites to comply with executive orders. And they were afraid to resume communication without a green light from their directors or the Department of Health and Human Services as they watched the Trump administration lay off CDC staffers in droves.

“It’s not that the CDC was delinquent,” Benjamin said. “It’s that they had their hands tied behind their backs.”

To work on the ground, the CDC needs an invitation from the state. But Anne Schuchat, a former CDC deputy director, said that during her 33 years with the agency, federal health officials didn’t need special permission to talk freely with local health departments during outbreaks. “We would always offer a conversation and ask if there’s anything we could do,” she said.

Lara Anton, a press officer at the Texas health department, said the state never prevented the CDC from calling county officials. To learn more about the state’s correspondences with the CDC, KFF Health News filed a public records request to the Texas health department. The department refused to release the records. Anton called the records “confidential under the Texas Health and Safety Code.”

Anton said the state sent vaccines, testing supplies, and staff to assist West Texas in the early weeks of February. That’s corroborated in emails from the South Plains Public Health District, which oversees Gaines County, the area hit hardest by measles.

“Texas will try to handle what it needs to before it goes to the CDC,” Zach Holbrooks, the health district’s executive director, told KFF Health News.

Responding to an outbreak in an undervaccinated community, however, requires enormous effort. To keep numbers from exploding, public health workers ideally would notify all people exposed to an infected person and ask them to get vaccinated immediately if they weren’t already. If they declined, officials would try to persuade them to avoid public spaces for three weeks so that they wouldn’t spread measles to others.

Holbrooks said this was nearly impossible. Cases were concentrated in close-knit Mennonite communities where people relied on home remedies before seeking medical care. He said many people didn’t want to be tested, didn’t want to name their contacts, and didn’t want to talk with the health department. “It doesn’t matter what resources I have if people won’t avail themselves of it,” Holbrooks said.

Historically, Mennonites faced persecution in other countries, making them leery of interacting with authorities, Holbrooks said. A backlash against covid restrictions deepened that mistrust.

Another reason Mennonites may seek to avoid authorities is that some live in the U.S. illegally, having immigrated to Texas from Canada, Mexico, and Bolivia in waves over the past 50 years. Locals guess the population of Seminole, the main city in Gaines County, is far larger than the U.S. Census count.

“I have no idea how many cases we might have missed, since I don’t know how many people are in the community,” Holbrooks said. “There’s a lot of people in the shadows out here.”

Public health experts say the situation in Gaines sounds tough but familiar. Measles tends to take hold in undervaccinated communities, and therefore public health workers must overcome mistrust, misinformation, language barriers, and more.

About 450 people — including local health officials, CDC scientists, nurses, and volunteers — helped control a measles outbreak sparked in an Eastern European immigrant community in Clark County, Washington, in 2018.

Alan Melnick, Clark County’s public health director, said his team spoke with hundreds of unvaccinated people who were exposed. “We were calling them basically every day to see how they were doing and ask them not to go out in public,” he said.

Melnick spoke with CDC scientists from the start, and the intensity of the response was buoyed by emergency declarations by the county and the state. Within a couple of months, the outbreak was largely contained. No one died, and only two people were hospitalized.

In New York, hundreds of people in the city’s health department responded to a larger measles outbreak in 2018 and 2019 concentrated among Orthodox Jewish communities. The work included meeting with dozens of rabbis and distributing booklets to nearly 30,000 households to combat vaccine misinformation.

The effort cost more than $7 million, but Jane Zucker, New York City’s assistant health commissioner at the time, said it yielded immense savings. The average medical bill for measles hospitalizations is roughly $18,500, according to data from prior outbreaks. Then there’s the cost of diverting hospital resources, of children missing school, of parents staying home from work to care for sick kids, and the lasting toll of some measles infections, including deafness or worse.

“I don’t think there’s a price tag to put on a child’s death that would otherwise be prevented,” Zucker said.

Local health departments in West Texas were understaffed from the start. About 18 people work at the South Plains health department, which oversees four vast rural counties. About 50 staff the department in Lubbock, where patients were hospitalized and health workers struggled to figure out who was exposed. In mid-February, Wells emailed a colleague: “I’m so overwhelmed.”

A Death Ignites a Response

On Feb. 26, Texas announced that a 6-year-old child had died of measles. Wells heard from CDC scientists for the first time the following day. Also that day, the CDC issued a brief notice on the outbreak. The notice recommended vaccines, but it worried public health specialists because it also promoted vitamin A as a treatment under medical supervision.

In emails, Texas health officials privately discussed how the CDC’s notice might exacerbate a problem: Doctors were treating children with measles for toxic levels of vitamin A, suggesting that parents were delaying medical care and administering the supplements at home. A local Lubbock news outlet reported on a large drugstore where vitamin A supplements and cod liver oil, which contains high levels of vitamin A, were “flying off the shelf.”

Too much vitamin A can cause liver damage, blindness, and dire abnormalities during fetal development.

Milton worried that parents were listening to misinformation from anti-vaccine groups — including one founded by Kennedy — that diminished the need for vaccination by inaccurately claiming that vitamin A staved off the disease’s worst outcomes.

“How many people will choose Vitamin A and not a vaccine because it appears to them there are two options?” Milton asked in an email.

Scientists at the CDC privately fretted, too. “HHS pressed us to insert vitamin A into all of our communications with clinicians and health officials,” one CDC scientist told KFF Health News, referring to the agency’s notices and alerts. “If pregnant women took too much vitamin A during the outbreak, their babies could be profoundly disabled. We haven’t seen those babies born yet.”

Another CDC official said they’ve had to “walk a fine line” between protecting the public based on scientific evidence and aligning with HHS.

While CDC scientists held their tongues, Kennedy exaggerated the power of nutrition and vitamin A while furthering mistrust in vaccines. “We’re providing vitamin A,” Kennedy said in an interview on Fox News. “There are many studies, some showing 87% effectiveness,” he claimed, “against serious disease and death.”

The studies Kennedy referenced were conducted in low-income countries where children are malnourished. Evidence suggests that vitamin A supplementation is seldom useful against measles in the United States, because deficiency is exceedingly rare.

Kennedy deflected criticism from those who call him anti-vaccine, saying that any parent in Texas who wants a measles vaccine can get one. He followed this with dangerously inaccurate statements. “There are adverse events from the vaccine. It does cause deaths every year,” he said. “It causes all the illnesses that measles itself causes, encephalitis and blindness, et cetera.” There is no evidence that measles vaccines “cause deaths every year.” Scores of studies show that the vaccine doesn’t cause encephalitis, that most potential side effects resolve quickly on their own, and serious adverse reactions are far rarer than measles complications.

In another interview, Kennedy said, “The MMR vaccine contains a lot of aborted fetus debris.” The measles, mumps, and rubella, or MMR, vaccine does not contain an iota of fetal cells.

HHS spokesperson Andrew Nixon and spokespeople at the CDC did not respond to queries from KFF Health News.

‘Staff Are Exhausted’

Despite national attention after the country’s first measles death in a decade, West Texas was overwhelmed. In late February and March, hospital administrators and health officials exchanged emails about how to lobby for resources.

“Local hospitals are at capacity,” wrote Jeffrey Hill, a senior vice president at the University Medical Center Health System in Lubbock. “The state reports emergency funds that typically cover a response like the measles outbreak are not available from the federal government right now,” he added.

“I am writing to express our urgent need for additional staff and funding,” Ronald Cook, medical director for Lubbock, said in an email, drafted with other Lubbock health authorities, to the deputy city manager. “Our Capacity is Stretched Thin: The health department has been operating seven days a week since February 2nd. Staff are exhausted.”

The city of Lubbock fronted money to help the local health department hire temporary staff. The state did not provide money, but it asked the CDC to send epidemiologists. Some came to Texas in early March. Then Texas requested federal funds.

None arrived, even as the outbreak approached 500 cases. It spread to Mexico when an unvaccinated Mennonite child returned home after visiting family in Seminole. This would fuel the largest outbreak Mexico has seen in decades, with at least 3,700 cases and 13 deaths in the state of Chihuahua.

Then another child in West Texas died of measles.

In a rare moment of openness, CDC scientist David Sugarman mentioned the outbreak at a vaccine advisory meeting in late April. “There are quite a number of resource requests coming in, in particular from Texas,” Sugarman said. “We are scraping to find the resources and personnel needed to provide support to Texas and other jurisdictions.”

Federal funds arrived in Texas on May 21, said Anton, the state health department spokesperson. By then, the crisis was fading. The outbreak seemed to have burned until every unvaccinated person in Seminole was infected, said Richard Eby, a doctor at Permian Regional Medical Center who treated some measles patients. Hundreds, if not thousands, of cases have probably gone undetected, he said. “A lot of people presumed their kids had measles,” he said, “and didn’t see the need to confirm it.”

On Aug. 18, health officials declared the West Texas outbreak over, but the consequences of the catastrophe will be lasting.

The outbreaks it sparked across the U.S. and Mexico are still spreading.

More are inevitable, Nuzzo said. A growing number of parents are deciding not to vaccinate their kids, worried over unfounded rumors about the shots. Misinformation is flourishing, especially after Kennedy fired vaccine experts who advise the CDC and replaced them with doctors and researchers on the fringes of the scientific establishment. For example, one of his recent appointees, Robert Malone, blamed the deaths of children with measles on “medical mismanagement,” without evidence.

At the same time, states are downsizing programs for emergency response, disease surveillance, and immunization after the Trump administration clawed back more than $11 billion in public health funds earlier this year.

Amid Lubbock’s toughest months, Wells sent an email to the department’s exhausted staff. “The future is uncertain, and I know this is an unsettling time for many of us,” she wrote. “Every day we show up and do our jobs is an act of resilience.”

Two big assumptions underlie President Donald Trump’s attack on diversity, equity and inclusion policies. The first is that discrimination against people of color is a thing of the past. The second is that DEI policies and practices discriminate against white people – especially white men – in what’s sometimes called “reverse discrimination.”

Hours after savoring that perfectly grilled steak on a beautiful summer evening, your body turns traitor, declaring war on the very meal you just enjoyed. You begin to feel excruciating itchiness, pain or even swelling that can escalate to the point of requiring emergency care.

In retrospect, Erica Kahn realizes she made two big mistakes.

The first was choosing to temporarily forgo health insurance when she was laid off from her job.

The second was screaming when a wild bat later landed on her face.

The bizarre encounter happened last August, while the Massachusetts resident was photographing the night sky during a vacation at the Glen Canyon National Recreation Area in Arizona. Kahn, now 33, noticed a few bats flying around but didn’t worry about them — until one flew up to her and got tangled between her camera and her face.

She screamed, and part of the bat went in her mouth. She doesn’t know which part or for how long, though she estimates it was only a few seconds. “It seemed longer,” she said.

The bat flew away, leaving Kahn shaken.

She didn’t think the animal had bitten her. Regardless, her father, who is a physician and was traveling with her, said she should go to a hospital within a day or so and begin vaccinations against rabies.

Figuring she would be covered as long as she obtained insurance before going to the hospital, Kahn said, she found a policy online the day after the bat incident. She said she called the company before she bought its policy and was told services related to an accident or “life-threatening” emergency would be covered.

Kahn went the next day to a hospital in Flagstaff, Arizona, where she started rabies prevention treatment. Over the next two weeks, she received the rest of the rabies shots at clinics in Arizona and Massachusetts and at a hospital in Colorado.

Then the bills came.

The Medical Procedure

Kahn received a total of four doses of the rabies vaccine. The doses are administered over the course of 14 days. Along with her first vaccination, she received three shots of immunoglobulin, which boosts antibodies against the virus.

Rabies is typically transmitted through bites or scratches from an infected animal. Experts recommend precautionary measures when a person has been potentially exposed to rabies, because once the neurological disease causes symptoms, it is fatal. The Centers for Disease Control and Prevention says postexposure rabies treatment has reduced the number of human fatalities to fewer than 10 a year in the U.S.

The Final Bill

According to explanation-of-benefits statements, Kahn owed a total of $20,749 for her care at the four facilities. Most of the charges were from the hospital where she was first treated, Flagstaff Medical Center: $17,079, including $15,242 for the rabies and immunoglobulin shots.

The Billing Problem: Most Insurance Doesn’t Start Immediately

Kahn’s policy did not pay for any of the services. “The required waiting period for this service has not been met,” said an explanation-of-benefits letter she received in December.

Kahn was stunned. “I thought it must have been a mistake,” she said. “I guess I was naive.”

When Kahn was laid off from her job as a biomedical engineer last summer, she had the option to temporarily stay on her former employer’s insurance under a COBRA plan, at a cost of about $650 a month. But as a young, healthy person, she gambled that she could get by without insurance until she found another job. She figured that if she needed medical care, she could quickly buy a private policy.

According to the Centers for Medicare & Medicaid Services, those who qualify for COBRA must be given at least 60 days to sign up — and if they do, the coverage applies retroactively. Kahn, who was still within that period at the time of the incident, said recently that she did not realize she had that option.

The policy she purchased after the bat episode, which cost about $311 a month, was from a Florida company called Innovative Partners LP. Documents Kahn provided to KFF Health News say the policy has a 30-day waiting period, which “does not apply to benefits regarding an accident or loss of life.”

Kahn said that after receiving notice that her claims were denied, she called the company to ask how she could appeal and was told a doctor would have to file paperwork. She said she wrote a letter that was signed by a doctor at Flagstaff Medical Center and submitted it in March but was unable to reach doctors at the other facilities.

Kahn said she was given conflicting answers about where to send the paperwork. She said a representative with the company recently told her it had not received any appeals from her.

Benefits statements Kahn received in early July show Innovative Partners had not paid the claims. The company did not respond to requests for comment for this article.

Sabrina Corlette, co-director of the Center on Health Insurance Reforms at Georgetown University, said most health coverage plans take effect on the first day of the month after a customer enrolls.

“The insurance companies — for good reason — don’t want people to wait to sign up for coverage until they are sick,” she said, noting the premiums healthy people pay help balance the costs of paying for health care.

The Affordable Care Act requires insurers to cover preexisting conditions, such as diabetes or heart issues. But that doesn’t mean they have to pay for treatment of an injury sustained shortly before a person enrolls in coverage, she said.

Corlette, who reviewed a brief benefits overview provided by Kahn, said the policy appears to have been a limited, “fixed indemnity” plan, which would pay only set amounts toward treatments per day or other period regardless of total expenses incurred. Such plans have been around for decades and aren’t required to meet ACA standards, she said.

But she said even if Kahn had bought comprehensive health insurance, it probably wouldn’t have covered treatment received so soon after she purchased it.

David Shlim, a travel medicine specialist in Wyoming who studies rabies, said Kahn made the right choice by promptly seeking treatment, even though she didn’t feel the bat bite her. The disease is deadly, and the fact that the bat went into her mouth meant she could have been infected from its saliva, he said: “You could hardly have a more direct exposure than that.”

Shlim, who recently co-wrote a federal advisory about rabies prevention, added that healthy bats don’t normally fly into people, as the one in this case did. The animal’s entanglement with Kahn suggests it could have been sick, possibly with rabies, he said.

Rabies prevention treatment is much more expensive in the United States than in most other countries, Shlim said. The priciest part is immunoglobulin, which is made from the blood plasma of people who have been vaccinated against rabies.

The treatment is often administered in hospital emergency rooms, which add their own steep charges, Shlim noted.

The Resolution

Kahn said she is employed again and has good health insurance but is still facing most of the bills from her misadventure at Glen Canyon. She said she paid a doctor bill from Flagstaff Medical Center after negotiating it down from $706 to $420. She said she’s also arranged a $10-a-month plan to pay off the $530 she owes for one of her rabies shots at another facility.

She said she plans to continue appealing the denials of payment for the rest of the bills, which total more than $19,000.

In a statement on behalf of the Flagstaff hospital — where Kahn incurred the highest charges — Lauren Silverstein, a spokesperson at Northern Arizona Healthcare, said the health system does what it can to limit costs. “We have less ability to control the prices of critical supplies that we use to treat patients, including pharmaceuticals, biologics, diagnostics and medical devices made by other companies,” she said.

Silverstein said the hospital needs to keep immunoglobulin on hand to prevent rabies, even though such cases are relatively rare and the drug is expensive.

The Takeaway

COBRA insurance policies, named for the Consolidated Omnibus Budget Reconciliation Act of 1985, enable many people who lose job-based coverage to pay to stay on those plans temporarily. There is a 60-day window to choose COBRA coverage, and once a beneficiary pays for it, the coverage applies retroactively — meaning that medical care is covered even if it occurred when the person was uninsured.

Corlette said Kahn’s predicament illustrates why people need to make sure they have health insurance.

She said people who lose employer-based coverage should consider enrolling in individual insurance plans sold on federal or state marketplaces. Many people who buy such policies qualify for substantial ACA subsidies to help pay premiums and other costs.

“If you are losing your job, COBRA is not your only option,” Corlette said.

Kahn wishes she had signed up for insurance coverage when she was laid off, even though she felt confident she would find another job within a few months. “That’s a very big lesson I learned the hard way,” she said.

Her wildlife encounter did not destroy her love of the outdoors. She even sees humor in it.

“I know what bats taste like now. It’s an earthy, sweet kind of flavor,” she joked. “It’s actually a pretty funny story — if it weren’t for the horrible medical bill that came with it.”

Bill of the Month is a crowdsourced investigation by KFF Health News and The Washington Post’s Well+Being that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

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

Today at about 11:30am local time, a magnitude 8.8 earthquake struck off the coast of Russia’s Kamchatka Peninsula in the country’s far east.