Don’t Let Hospital Billing Ruin American Lives

Your recent piece “Baffling. Frustrating. Frightening. What It’s Like To Be Sued Over Medical Debt” (June 1) adds to a growing breadth of firsthand patient experiences caused by undue medical debt. These patients understand they need to pay for their care but instead are strapped with baffling medical bills and no direct way to get assistance. That’s exactly what these hospital and insurer billing practices do: make it difficult for patients to understand what they are being charged for, leaving them to navigate uncertainty and frustration while trying to determine what they actually owe.

The National Consumers League has heard from patients and their caregivers who have daunting stories. Patients shouldn’t be at the mercy of unfair hospital practices or be forced to choose between vital medical treatments and other necessities because they’re priced out — but this is happening every day. found that medical debt has affected most U.S. adults, with nearly half incurring this debt after receiving a “surprise” bill from a hospital or provider. These bills not only risk patients’ livelihoods and upend their financial stability, but they also ruin lives. When faced with medical debt, more than  said they skipped future treatments or drained their savings.

There is also a correlation between hospitals that pursue medical debt and those participating in the federal 340B drug-pricing program. The intention behind 340B is to give hospitals and other eligible providers access to discounted medications so they can help reduce costs for low-income, uninsured, or otherwise vulnerable patients. Instead, 340B hospitals pursue aggressive medical debt collection practices at , explicitly failing to meet their end of the deal in 340B. Making matters worse, hospitals with high shares of cancer patients continue to use some of the most aggressive medical debt collection tactics.

Hospitals, especially those with heightened responsibilities to vulnerable patients, need to have transparency and accountability if they have the privilege of getting greatly reduced prices for drugs; the intention is to pass along those discounts to patients, not hoard the discounts. This is a federal program that needs a federal solution. Congress needs to step in and rein in these predatory medical debt collection practices. Until then, patients across the country will continue to suffer.

— Sally Greenberg, CEO of the National Consumers League; Washington, D.C.

We are defending a large number of medical debt cases here in Kansas. The unusual angle for us is the large number of cases brought to court with no attorney representing the debtor; most of those cases are default judgments. When we get involved, we learn most of the cases had improper service, so the party doesn’t know they’ve been sued.

One of our cases involves a by a billion-dollar nonprofit hospital. Her paycheck at McDonald’s was garnished. We challenged their actions, and while the judgment has been set aside, the collection case is continuing.

— Matt Keenan, executive director of Kansas Legal Services; Topeka, Kansas

Spelling It Out: For Shame

I don’t even know what to begin with. Ñî¹óåú´«Ã½Ò•îl Health News is on a tear trying to criticize and humiliate families and spellers who have finally found a reliable method of communication (“MAHA’s Treatments for Autism: Camel’s Milk, Stem Cell Injections — And Spelling Therapy,” June 8).

I don’t understand how the author of this piece was able to justify conflating camel’s milk and anti-vaxxers with people with whole-body apraxia being able to use the alphabet to spell out their thoughts and feelings. I find it incredibly disingenuous to lump together these unrelated topics to discredit or even bully severely disabled people and their families. And especially shameful is using hostile sources like Amy Lutz, who should know better than to try to demean parents who “subject” their children to the alphabet.

Offering a nonspeaker an alternative to silence and frustration that might otherwise lead to self-injurious and aggressive behavior is not dangerous. It’s not as if it’s some invasive, risky, or controversial treatment some parents are choosing to subject their loved ones to. It’s simply the alphabet and an alternative method of communication for individuals with whole-body apraxia. And it is real and not the imagination of pathetic families.

You are on the wrong side of history for all the wrong reasons, and, as the number of spellers and speller advocates grows, you will be ashamed and rightfully so.

— Joanne Curcio; Paramus, New Jersey

I am the father of Stone, a 20-year-old nonspeaking autistic young man who is currently carrying a 3.85 GPA in high school-level classes. Stone communicates using a keyboard, iPad, or letterboard, with support from a trained communication partner. He requires this support because of apraxia, a neurological condition that disrupts the motor pathway between thought and movement. His intelligence and his communication are not in question. His body’s ability to execute motor commands independently is the challenge, and that distinction matters enormously.

I am also the founder of Communicators for Communication Rights (C4CR) and host of The Lighter Side of the Spectrum podcast. I have spent years documenting the legal, scientific, and human case for communication access for nonspeaking individuals.

Your recent article does three things that cause real harm to the community I am part of and represent, and I want to name them directly.

First, it conflates motor-based communication with the Make America Healthy Again movement. This framing implies that letterboards and keyboard-based communication with a communication partner are a new initiative embraced primarily by parents who identify with the MAHA platform. Nothing could be further from the truth. These methods have been used and advocated for by families across the full ideological spectrum for decades. The article provides no data on how many of the families using these methods across the country are MAHA supporters. That is not a framing choice. It is a factual gap that mischaracterizes an entire population.

Second, the article focused on Elizabeth and Noah’s challenges with independent typing rather than examining what communication has actually brought to their lives. The assumption embedded in that framing, that authenticity requires independence, ignores the well-documented neurological reality of apraxia. These are not people choosing not to communicate independently. These are people whose motor systems do not reliably cooperate with their intentions. Holding them to a standard of independence that their neurology makes impossible, and then using that standard to question their communication, is the same mistake school districts make every day when they deny communication access to nonspeaking students.

Third, the article conflates motor-based communication with The Telepathy Tapes. That The Telepathy Tapes became a top podcast speaks to public interest in nonspeaking individuals and the stories told by Ky Dickens. It has nothing to do with whether nonspeaking people can communicate authentically through letterboards and keyboards. Bundling these two things together in the same piece suggests a connection that does not exist and gives ammunition to those who want to dismiss every nonspeaker’s communication as suspect.

When a credible news organization ties access to a political brand and a paranormal-focused podcast, it gives school districts a new weapon to use against nonspeaking students. The people who pay that price are not politicians. They are children sitting in classrooms without communication access right now.

— David Kaufer; Edmonds, Washington

Vexing Vaccine Research

Having read your article “A Danish Couple’s Maverick African Research Finds Its Moment in RFK Jr.’s Vaccine Policy” (May 18), my first question is: Why focus research on infants in Africa, Denmark, or minority populations in the United States rather than studying broader populations? What is the fascination with these groups and the rationale for selecting them?

I understand that vaccines may be administered at different ages in some countries due to limited availability and resources. If vaccine access is the issue, it seems that increasing immunization resources and availability would be a more direct solution.

I was born in 1961 and received the recommended childhood vaccinations of my time, on schedule. During my childhood, my family grew much of our own produce and purchased meat from local butchers and fishermen. Looking back, I do not recall autism being discussed or diagnosed as frequently as it is today. This leads me to wonder whether environmental and dietary changes deserve greater attention as potential contributing factors.

Over the decades, the food supply has changed significantly. Many processed foods now contain added sugars, corn syrup, artificial colorings, preservatives, and industrially produced oils. Modern agriculture and food production also involve pesticides, chemical treatments, and hormone use in some settings. At the same time, rates of obesity, diabetes, and autism diagnoses have increased. While correlation does not prove causation, these trends suggest that further research into environmental exposures, food production practices, and agricultural chemicals may be warranted.

For that reason, I question whether research efforts should focus primarily on vaccines as a possible explanation for autism or early childhood health outcomes. It may be equally important to investigate the food industry, farming practices, seafood production, crop treatments, and the long-term effects of environmental chemicals on children’s health.

I would encourage researchers — including Health and Human Services Secretary Robert F. Kennedy Jr., Denmark’s Christine Stabell Benn and Peter Aaby, and the Centers for Disease Control and Prevention — to pursue a broader examination of potential factors influencing autism rates and other childhood health concerns. Parents deserve research that explores all plausible causes and is conducted with transparency, scientific rigor, and respect for the communities involved.

I am also concerned about the ethical implications of conducting research in economically disadvantaged populations. Is this part of Project 2025 — or Jim Crow 2026? Any study involving infants and children should ensure informed consent, strong protections for participants, and a clear commitment to their well-being.

Ultimately, my concern comes from a desire to understand why autism diagnoses and other health challenges appear more common today than in previous generations. I hope researchers will continue to investigate all possible contributing factors and prioritize the health and welfare of children everywhere. It saddens me to think that our country is going backward.

— Foxie Clemens; Mansfield, Ohio

Tools To Survive ICU Stays — And Possibly Thrive

As a critical care nurse for 25 years, I appreciated your recent article on post-intensive care syndrome and the lasting effects of critical illness on patients and families (“For Many Patients Leaving the ICU, the Struggle Has Only Just Begun,” April 10).

What you described is something I saw repeatedly at the bedside. Patients often left the ICU with fragmented memories, vivid dreams, confusion, or little understanding of what had happened to them. The article rightly highlights the impact on patients. Equally important is the growing recognition that post-intensive care syndrome can affect families as well, known as PICS-F. They are often left carrying fear, unanswered questions, and the difficult task of trying to make sense of an overwhelming experience.

Your mention of ICU diaries as a potentially helpful tool is important. Research suggests they may help patients reconstruct their ICU experience, fill in memory gaps, and better understand what occurred during their hospitalization.

My observations led me to create a , designed not only to help patients piece together their ICU stay, but also to give families a place to track updates, write down questions, and organize information during a stressful and often confusing time. Later, I created a Hospital Wellness Journal for patients and families navigating hospitalization more broadly.

I created these resources because I repeatedly watched families struggling to remember physician updates and searching for some way to organize an experience that can feel deeply stressful and disorienting.

Although I no longer work at the bedside in critical care, my work continues to be shaped by what I saw there, through both my journals and artwork centered on healing and well-being.

Post-intensive care syndrome deserves broader awareness and continued attention to approaches that support not only survival, but recovery and understanding after critical illness.

— Nicole Cromwell; Carmel-by-the-Sea, California

This <a target="_blank" href="/letter-to-the-editor/readers-defend-spelling-therapy-curse-medical-debt/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

Dowse wore a full-body protective suit with a plastic face mask. As a pediatrician in southern Utah, he couldn’t risk getting even a mild infection, because many of his patients are babies too young for measles vaccines or children whose parents choose not to protect them with immunizations. “I went in looking like a scientist in E.T.,” he said.

Measles can cause brain damage, deafness, or death in newborns. If the baby entered the world with a measles rash and fever, Dowse was prepared to give the infant a spinal tap to assess the risk of neurological damage.

Luckily, flushed and crying, the baby looked healthy. To keep it that way, Dowse wanted to inject the baby with concentrated antibodies against the measles virus. To his surprise, the parents objected, promising to give their child “all kinds of vitamin A,” Dowse said. He begged them not to, saying, “You can’t see it on the surface, but the baby’s body is fighting the measles.” They were afraid of vaccines, so Dowse explained that antibodies were different and that they would stop measles from replicating in the infant.

“That shot is going to basically give the baby ammo to fight,” Dowse said.

The parents relented. A couple of days later, they left the hospital with a child who had narrowly skirted an infection that killed many thousands of babies a century ago. Nonetheless, Dowse said he doubted they would be returning for childhood vaccinations to protect their baby against a bevy of illnesses. Like more than a dozen Utah doctors and health officials who spoke with Ñî¹óåú´«Ã½Ò•îl Health News, Dowse has adjusted his expectations.

He is part of a reluctant cohort of medical professionals now on the front line of America’s regressive next chapter in health history, one in which dangerous and preventable diseases return.

“I wish that people could see what I see,” said Nathan Money, a hospital pediatrician in Utah whose eyes welled up with tears as he described children he’s treated for measles struggling to breathe. “This train is going in the wrong direction, and it can feel like a helpless situation, because we’re just not seeing the public messaging and leadership that’s needed to turn this around.”

Since measles was deemed eliminated in the U.S. a quarter century ago, public health workers have extinguished sporadic outbreaks in close-knit, undervaccinated communities with targeted methods: Isolate people with measles and quarantine their contacts to contain the virus. But as vaccination rates , the virus is moving beyond insulated communities, overwhelming public health departments constrained by shoestring budgets. Larger outbreaks, the kind not seen for a generation, have forced health officials into a new paradigm: They have stopped racing to “contain” infections and shifted gears into what they call “mitigation.”

Utah made that transition early this year, once the outbreak hit “a point where you no longer have control over it,” said state epidemiologist Leisha Nolen. By March, measles had been detected in every health jurisdiction in the state and in northern Arizona. More than 950 people have tested positive in the two states since the outbreak began in August, but many people with measles haven’t been tested. A of measles viruses suggested that the true number of cases last year could have been 6.5 times what was known.

Last year under President Donald Trump, U.S. measles cases exceeded 2,000 for the first time since 1992. Six months into 2026, the U.S. has already surpassed that threshold. Prolonged outbreaks exact a toll on children, who have spent days in hospitals for severe infections and missed weeks of school for mild ones. Adults with measles miss work. Parents delay daycare to keep their babies safe. Doctors in Utah have enacted labor-intensive protocols to keep measles from spreading in clinics. Newborns and people with weakened immune systems who have been exposed to the virus receive infusions of concentrated antibodies costing $500 to $1,000. Medical visits for measles . Health departments spend millions trying to curb infections.

“This is like a snowball that gathers speed as it rolls downhill,” said Emilie Morris, a hospital pediatrician in Salt Lake County and Utah County. A full-throttle campaign to educate communities on the safety of vaccines and the diseases they prevent could turn the situation around, doctors and health officials said. It would require an effort similar to what the anti-vaccine movement has long done in videos, blogs, and podcasts. For example, the anti-vaccine organization that Robert F. Kennedy Jr. founded before taking the helm at the Department of Health and Human Services, Children’s Health Defense, visits , , and has bought that downplay the threat of viruses while wildly exaggerating the risk of vaccine side effects. Kennedy’s and as health secretary are adding to parents’ doubt.

After the development of vaccines and antibiotics in the mid-1900s, virologist and Nobel laureate Frank Macfarlane Burnet wrote, “One can think of the middle of the twentieth century as the end of one of the most important social revolutions in history, the virtual elimination of the infectious diseases as a significant factor in social life.”

He couldn’t have imagined what was coming.

‘Year of Sickness’

In communities nestled among the red sandstone cliffs and riparian forests of southern Utah, measles took hold last summer. At the main school in Hildale, a town along the Arizona border, just 30% of kindergartners are considered adequately immunized by Utah’s health department, meaning they’ve gotten recommended vaccines against measles, tetanus, polio, and more. Exemptions from childhood vaccine requirements are easily acquired in the state: Parents need only claim personal, religious, or medical reasons.

Many people in Hildale and the surrounding towns are connected to the Fundamentalist Church of Jesus Christ of Latter-Day Saints, a sect that has been leery of the government since a police raid in 1953 separated polygamous parents from their children. Shirlee Draper, a southern Utah resident who grew up in the faith, said they became ever more isolated in the early 2000s under the leadership of Warren Jeffs. Before he was sentenced to life in prison for sexual assault against minors, Jeffs instructed his followers to withdraw from public schools and mainstream medicine.

“Growing up, we all got our vaccines,” said Draper, who left the group during Jeffs’ reign. “It wasn’t until Warren Jeffs came along that there started to be more and more resistance.”

After Jeffs went to prison, many people left the faith but remained concerned about vaccines because of online misinformation, such as claims that the shots are toxic. Today a small shop in Hildale sells mouth sprays and oral drops professing to detoxify vaccines. Water, glycerin, and “whole grain alcohol” are listed as ingredients in one called Vxx-Dtx.

A mother who Ñî¹óåú´«Ã½Ò•îl Health News agreed not to name, because she fears stigmatization, said she considered getting her kids vaccinated when schools in southwest Utah started seeing measles cases last summer. She had split from the fundamentalist group but still worried about vaccines giving her children autism or other complications. in top-tier scientific journals have refuted a link between vaccines and autism, but the anti-vaccine movement has kept the notion alive.

Then the woman’s son told her that his classmate had a rash and spit on him, she said. A few days later, he fell ill with a fever, followed by vomiting, diarrhea, and a head-to-toe rash.

“He felt downright sick for 10 to 14 days,” the woman said. “It was hard to see the end of the tunnel.”

Then her daughters came down with measles. She had a fleeting case, too, even though she had been vaccinated as a child. Breakthrough infections and are relatively rare. Only 4% of reported this year and last have been among people who’ve had two doses of the measles, mumps, and rubella vaccine.

By the time the family recovered, the son had missed nearly three weeks of school, the daughters a month, and the mother had postponed an important family gathering because she didn’t want to spread infections. “I just got my youngest’s missed-school report and it’s super high,” she said. “This is the year of sickness.”

The woman said she regretted not getting her kids vaccinated when the outbreak started. She said she knows about 30 people who have fallen sick with the measles. Except for a few who needed medical care, they haven’t been tested. “I bet there’s been thousands of cases,” she said.

Measles doesn’t have a cure. She and others have tried to ease symptoms with cod liver oil, vitamin C, zinc, and “essential oils,” plant extracts long used in folk medicine that have become a lucrative industry in Utah. People in southwest Utah are trying a lot of things: One resident sells homemade lotion on Facebook, writing, “Breastmilk & Honey has been a life saver for the measles rash.”

Beyond Containment

The outbreak may have started among a fundamentalist community, but it’s spread far beyond because Utah’s vaccination rates have dropped steadily since the covid pandemic. Fewer than 80% of kindergartners in the 2024-25 school year in southwest Utah, with only 87% adequately immunized in the state as a whole — far below the 95% threshold required for herd immunity.

Several Utahns told Ñî¹óåú´«Ã½Ò•îl Health News that “alternative health” or “wellness” drives the trend, rather than religion. The state has a thriving supplement industry, , aided by deregulatory policies supported by the late Utah senator Orrin Hatch and a high concentration of people who earn income from multilevel marketing. These networks of people sell supplements, essential oils, peptides, and other alternative therapies on social media, YouTube, and podcasts, according to and .

Alternative health isn’t necessarily anti-vaccine, but many people who sell unconventional remedies online and in podcasts and mainstream medicine.

“People are suspicious, and it’s well founded,” Draper said. She described dismissive doctors, exorbitant medical bills, hospital systems that over care, and pharmaceutical companies that drove . Communities already wary of government authorities are poised to interpret failings in American healthcare as signs that medical authorities aren’t to be trusted, either, she said.

“Across America, we have entire populations who find safety in clinging to whatever confirms their deeply held beliefs,” she said.

A mistrustful disposition gave way to covid conspiracy theories in 2020 and 2021. In southwest Utah, for example, a tricked out with digital billboards showed up to covid vaccination sites to advertise Plandemic, a rife with , including that masks “activate” the coronavirus and that global elites planned covid-19 to control the population. Misinformation added fuel to anger about public health rules, and there was political backlash under the umbrella of a largely Republican “medical freedom” movement. Utah enacted laws reining in public health, including one that eases exemptions to childhood vaccinations and another that prohibits most employers from requiring vaccines.

In the wake of the covid backlash, health officials tread lightly. Rather than enforce containment measures, “we give our advice and focus on personal responsibility,” said David Heaton, public information officer at the Southwest Utah Public Health Department.

One of the most contagious diseases in the world, measles spreads with astonishing speed among the unvaccinated. One of a New York school outbreak in 1974 found that a second-grader with measles infected 28 other students in 14 classrooms because measles can spread through ventilation systems.

As cases doubled then quadrupled in southern Utah, the regional health department couldn’t keep up with calling the contacts of everyone infected. It shifted its efforts to announcements guiding the public at large. For example, it asks people to call before showing up to clinics with measles symptoms. Still, patients in plenty of hospitals have been exposed. For example, when parents brought a sick, unvaccinated child to a large pediatric hospital in Utah in September, they shared the space with 11 infants too young to be vaccinated. Doctors rushed to give the babies infusions of antibodies and they remained healthy, according to a .

On the radio and in posts on social media, Heaton warns that measles is spreading and that vaccines are the best defense. “If you’re not immunized and you’re anywhere in public,” Heaton said, “you’re fair game for this virus.”

The department doesn’t have the capacity to talk with people directly in the five counties it serves. For a few years, it leaned on community health workers who went to churches, town halls, and other gathering places, listening to people’s concerns and telling them what the science said about covid, vaccines, and other matters of public health. But these workers were laid off early last year, after the Trump administration clawed back more than $12 billion in federal public health grants to states.

“We were starting to get a little bit of traction,” Heaton said of the community workers. “And then we lost all of our team.”

The department offers free measles vaccines to children, but uptake is slow. Nursing director Mindy Bundy said that when she started the job 20 years ago, demand was so high that she would give parents tickets while they waited, as if they were crowding around a deli counter.

“Now even in an outbreak,” she said, “we aren’t seeing a huge increase of people wanting vaccination.”

As officials tried to do the best they could, the outbreak spread north, hopping from one undervaccinated community to the next. When health officials in Utah County spoke with people who had tested positive, they often had no connection to other known cases. “Pretty quickly, we started to lose the links,” said Michael Leman, the county health department’s nursing director. Contact tracing, the cornerstone of containment, was failing.

Every week, the state health department posted a growing list of locations on its website — a Trader Joe’s, a Mormon temple, an aquarium, preschools — that people had visited while contagious. But many people who tested positive hadn’t been to those places, Leman said. “They could have gotten it at Walmart. They could have gotten it walking through a mall,” he said. “I mean, just anywhere in the public they could have been exposed.”

In February, high school students throughout Utah tested positive after a state wrestling tournament at Utah Valley University in Orem. A dashboard monitoring measles viruses in wastewater lit up with notifications around the state. “Wrestling really feels like our turning point,” said Nicholas Rupp, communications director at the Salt Lake County Health Department.

Salt Lake County’s shift from containment to mitigation meant prioritizing high-risk situations and relaxing control everywhere else. When a student has a confirmed case, for example, health officials meet with the school nurse to figure out which kids are most vulnerable. Unvaccinated children in the same classroom as someone infected are asked to stay home for 21 days, but those in other classrooms might not be, said Melanie Crossland, an epidemiologist at the Salt Lake health department. Some schools with high vaccination rates have opted to monitor student temperatures daily instead of requesting quarantines. One school created a separate space for the unvaccinated.

Crossland said such bespoke strategies entail a “huge” amount of effort but have staved off blowback that deflated her during covid.

“We give everything when we’re here,” she said, “but the days of killing ourselves, when legislatively no one is going to give us any help, are done.”

Daycare Dilemma

The outbreak has lasted so long that some children who have recovered from measles have since been hospitalized for what should be mild illnesses from common bugs, said Kerri Smith, a hospital pediatrician in southwest Utah. Measles can , impairing a body’s ability to fight other viruses. “It’s making children very susceptible to getting sick again,” Smith said.

Her eyes were bloodshot, and she looked drained from a week of long shifts. Since the outbreak began, she’s treated more than a dozen babies and children severely sick from measles.

“They’re usually admitted to the hospital with measles pneumonia, so they’re struggling to breathe, pulling for air below their ribs,” she said. “High fevers, 104 to 105, absolutely miserable, extremely fatigued, really dehydrated with sunken eyes.” Most children fully recover from measles, but a fraction develop permanent , a small percentage die, and in , measles kills a person years after the infection.

No one has died so far in Utah’s outbreak. And barring that tragic outcome, Smith and other doctors said, some parents fail to grasp the gravity of measles, even as their own children have tubes inserted into their small nostrils to deliver oxygen. Despite repeated warnings, doctors said, some unvaccinated family members of patients — who could be contagious — walk around the hospital while visiting their loved one. This means the waiting room, the elevator, the cafeteria, and other places need to be shut down for cleaning, and vulnerable people alerted.

“People don’t realize how easily this spreads,” Smith said.

Morris, the pediatrician working in two counties, recalled a conversation with a nonchalant father who didn’t seem to understand the need for quarantine. “I know this is an inconvenience to you,” she said. “It’s also a huge inconvenience to the parent who has an infant who could be severely impacted by this disease.”

On top of feeling depleted, doctors with young children said they are anxious. Emily Chin, a physician in Salt Lake County, worries she’ll bring measles home to her newborn. One evening, she sat in her garage after caring for a child with a rash. The patient’s measles test was still being processed, so Chin isolated herself in a room for the night, wearing an N95 mask instead of holding her infant.

Like many mothers in Utah, Chin plans to give her baby an early dose of the measles vaccine at 6 months old because of the outbreak, in addition to two doses at ages 1 and 4. Several mothers said they avoid travel and public places because they fear their babies could be infected. Some are delaying daycare. Others, like Kandace Hyland, a marketing director in Salt Lake County, don’t have that option.

Hyland was shocked when her daycare told her that it didn’t track the vaccine status of staff, even amid the outbreak. In March, she posted an calling for the state to require daycare staff to be vaccinated against the measles when the virus is spreading. Even if daycare staff file for vaccine exemptions, she said, parents could at least find out what portion of their babies’ caretakers pose a life-threatening risk.

Hyland sent her idea to the state health department. Nolen, the state epidemiologist, said she agreed with the concern, and was “talking with the division of licensing about the issue,” in an email shared with Ñî¹óåú´«Ã½Ò•îl Health News. Hyland also wrote the Division of Licensing and Background Checks. In an email, its director, Shannon Thoman-Black, replied that the division does “not have the legislative authority to implement a mandate.”

“They always talk about parents’ choice,” Hyland said. “But I don’t feel like I have a really good ‘parents’ choice’ right now.”

Measles’ Comeback

The U.S. will almost certainly this year or next, but it could be regained if political leadership backed nationwide campaigns to boost confidence in vaccines, said Demetre Daskalakis, a former director of the Centers for Disease Control and Prevention’s national immunization center and now the chief medical officer at the Callen-Lorde community health center in New York.

“Under Secretary Kennedy’s leadership, that’s unlikely to happen,” he said. “We’re going back to a pre-vaccine era.”

HHS spokesperson Emily Hilliard defended the secretary and his agency in an email, writing that the CDC has “surged resources” to contain measles outbreaks. “The CDC, HHS principles and the Secretary have been vocal that the MMR vaccine is the best way to protect yourself against measles,” she said.

Kennedy’s words and actions suggest otherwise. He’s said that the measles vaccine leads to “deaths every year,” which is . He continues a potential link between autism and vaccines, no matter how many there is none. And he oversaw abrupt changes to the recommended childhood vaccine schedule, a move called dangerous and not backed by science. A federal judge blocked those changes in March, but Trump recently issued an executive order to reexamine the schedule.

“It’s been confusing for the public,” said Dorothy Adams, executive director of the Salt Lake County Health Department.

In May, Kennedy met with Republican Utah Gov. Spencer Cox, who has said little about the state’s ongoing outbreak. Kennedy praised Utah’s action on Make America Healthy Again priorities, such as banning fluoride in public drinking water and easing restrictions on raw milk sales, according to Salt Lake City’s . Cox declined to comment for this article.

Meanwhile, the U.S. public health system has been further weakened by the Trump administration’s cuts and delays to public health grants.

“If you’re in the thick of it and you don’t know if you will be reimbursed, you adjust your response,” said Angela Dunn, a doctor and former Utah state epidemiologist. “This outbreak is a perfect storm of disinformation, trauma from the covid pandemic, and the drop in funding.”

Measles isn’t the only preventable malady making a comeback. As children played nearby in a sun-speckled park in Salt Lake City, Morris talked about a baby in the intensive care unit who was bleeding uncontrollably after a fall. The baby’s parents had refused an injection of vitamin K that helps blood clot in newborns. As they fretted over their infant, Morris said, she felt awful for them and regretted not being able to overcome mistrust in basic, lifesaving interventions. She had the same swirl of emotions when an unvaccinated toddler in her care recently died of whooping cough.

“I was one of the only people in the room with the nurse when the child coded,” she said with tears in her eyes. “You think, ‘I wish this child was vaccinated,’ but it’s hard because I also see how much grief these parents are holding.”

This <a target="_blank" href="/public-health/utah-measles-outbreak-vaccines-preventable-diseases-doctors-strained-new-normal/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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

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

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

Supporters say assisted spelling has improved the lives of thousands of people with autism, such as Bonker, and they have powerful allies. Kennedy appointed Bonker and another autistic “speller,” as they call themselves, to a 20-member autism panel including several parents and others who have attributed autism to childhood vaccinations.

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

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

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

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

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

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

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

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

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

A Patchwork of Perspectives

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

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

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

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

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

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

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

Noah the Speller

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Verite News and Ñî¹óåú´«Ã½Ò•îl Health News agreed to not use Yolibeth’s full name, because she is worried about repercussions related to her immigration status.

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

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

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

Missing Out on Care

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

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

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

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

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

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

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

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

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

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

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

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

‘A Double-Edged Sword’

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

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

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

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

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

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

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

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

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

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

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

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The Department of Health and Human Services is seeking data from little-known state systems that allow hospitals and clinics to exchange detailed, identifiable patient information, Ñî¹óåú´«Ã½Ò•îl Health News has learned.

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

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

But Kennedy told Ñî¹óåú´«Ã½Ò•îl Health News that medical records are key to investigating the cause of autism, vaccine safety, and chronic diseases. And millions of dollars in grant money has poured into a Nebraska nonprofit that has assisted Kennedy’s effort, according to state records.

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

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

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

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

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

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

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

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

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

Last June, Behm and leaders of other state exchanges met with Kennedy’s top advisers to discuss sharing more medical data with federal agencies. The state organizations followed up with a pitch in October for a new surveillance system that would give the federal health department “real-time, 24-hour data feeds on opioid and chronic disease trends” within a year, according to a presentation reviewed by Ñî¹óåú´«Ã½Ò•îl Health News. Under the proposal, HHS would get data from 90% of the population’s medical records by 2028.

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

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

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

A System To Monitor Chronic Disease

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

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

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

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

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

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

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

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

A Kennedy Partner in Nebraska

At least one state has been cooperative.

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

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

“They’re looking at the data differently and providing some insights back to the CDC,” Bland told Ñî¹óåú´«Ã½Ò•îl Health News.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ñî¹óåú´«Ã½Ò•îl Health News data reporter Maia Rosenfeld contributed to this article.

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It’s a situation state officials have spent more than a decade trying to avoid. For years, they’ve been trying to make it harder for parents to send their kids to school unvaccinated.

But those efforts have backfired in places like St. Clair County, in Michigan’s conservative Thumb region. Remington Nevin, the county’s medical director, has declared “a new era of vaccine choice.” Local parents there can now bypass the usual protocols and get school vaccine waivers via email, days after they fill out a brief digital form.

State health officials aren’t fighting it.

In fact, Michigan’s health agency has been helping more than 30 counties move away from a state policy once credited with sharply reducing the number of parents who opted their kids out of shots.

In 2015, the state started requiring parents seeking waivers to first attend a vaccine education session, in person, at their local health department.

But in the post-covid era, local health officials say, the sessions became hostile, ineffective, and sometimes even unsafe for staff. One high school called police last fall over an escalating dispute with parents who refused to obtain a state-recognized waiver for their children, with a sheriff’s deputy warning the parents that they could face criminal charges.

In response, the state has helped create a hybrid waiver process for dozens of counties, allowing parents to take a brief vaccine education course online while still requiring they get their waivers signed in person. It’s part of a broader shift in strategy in a state that had some of the most polarizing and covid restrictions.

At Michigan schools where only 30% to 40% of students are now vaccinated, it is “simply not possible to keep diseases like measles at bay,” said , the state’s chief medical officer. “And when one of these measles cases ends up in a low-immunization community, that’s when the ember really has a chance to expand and become a wildfire.”

A Short-Lived Success Story

In 2014, Michigan had the in the country.

Health officials suspected some parents were just signing waivers during the stress of school registration, not because of a deeply held conviction.

“‘Oops, I forgot to do this. I’m just going to sign a waiver and be done with it,’” said Norm Hess, executive director of the . “That’s not really the way we want parents to make decisions on this issue.”

Around that time, national headlines were focused on a Disneyland-linked measles outbreak in which were infected. California cracked down, becoming the first state in decades to end .

With Republicans then in control of the Michigan Legislature and governor’s office, health officials found a side door. They created an saying nonmedical waivers required certification by the local health department “that the individual received education on the risks of not receiving the vaccines being waived and the benefits of vaccination to the individual and the community.”

“We were not aware of the rule until the day it happened,” Suzanne Waltman, president of Michigan for Vaccine Choice, . “We thought it was a stealth move.”

At first, it seemed to work. Kindergarten waiver rates in 2015. “Kids were protected more from these vaccine-preventable diseases,” Hess said.

But after that year, waiver rates started rebounding. When the pandemic hit five years later, immunization rates plunged.

‘An Unsafe Setting’ for Medical Staff

Juan Marquez is the medical director of a county where a measles outbreak sickened several people this spring, but even he wouldn’t want to do those in-person sessions again.

“It was really creating an unsafe setting, actually, for our nurses,” said Marquez, the medical director for two counties, Livingston and Washtenaw, just west of Detroit.

“Our nurses are just trying to do their job,” Marquez said. “And you can imagine, to have somebody yell at you or just say not nice things to your face and sit through that for hours is demoralizing.”

Washtenaw has had seven measles cases since March and is believed to be the source of an eighth case in a neighboring county. As of May 28, the state had a total of 14 cases this year.

Since the start of the pandemic, waiver requests in Michigan have been increasing.

Tensions over public health became especially high during the state’s covid lockdowns, which critics lambasted as too long and too strict. Republicans , and Donald Trump flipped the state in the 2024 presidential contest.

Some parents felt it was demeaning to have to go in for counseling sessions they perceived as judgmental.

Republican , who represents a district along the state’s southern border, recalled her session, speaking at a in Lansing last year. “I had a very negative experience there, simply because we made decisions as parents and did the research and made the choices that we felt were best for each one of our children.”

That resentment has also made it harder to do basic public health work, like contact tracing for measles cases, Marquez said.

Of the 10,000 vaccine waivers Marquez’s counties have given out in the past 10 years, he said, the education sessions changed the minds of maybe one or two people.

“If we’re not changing folks’ minds, can we do this in a safe way?” Marquez said. “So that was really the idea behind the hybrid model.”

The Workaround

At first, state immunizations director Ryan Malosh thought dropping the in-person requirement was a bad idea.

He was skeptical when Livingston County health officials said they wanted to replace in-person sessions with a 20-minute online course about the benefits of vaccines and the risks of vaccine-preventable diseases.

State health department staffers were worried that if the waiver process became more convenient, more people would get exemptions, which could lead to more outbreaks. And because parents could get a waiver from any local health department, people from across the state might start flooding Livingston County with requests.

“We were worried that this could be sort of a sinkhole,” Malosh said.

It wasn’t. Parents took the online course, then made an appointment at the health department to get their nonmedical waivers signed. Waiver rates increased in Livingston County, but at the same rate they were rising in the rest of the state.

So the state turned to the University of Michigan to create a standardized, online course that any county could use. Parents would go through a 20- to 30-minute course, answering questions about the content, and then be able to get their waivers signed at their local health department office.

Michael Rubyan, a public health associate professor at the university, worked with some 40 public health nurses from throughout the state to design it. They wanted it to be simple and fact-based: Here’s what you should know about these diseases. Here’s how vaccines work. And if there is an outbreak at your school, your kids may have to stay home if they’re not vaccinated.

No judgment. No pressure.

This needed to be a building block in a much longer relationship with local public health, the nurses said. And while this change alone probably won’t lead to a dramatic decrease in waivers, Malosh said, it may start to rebuild some trust. “That then opens the door for further conversations, which maybe then gets these folks vaccinated,” he said.

Hybrid May Not Be Enough

About a third of the state’s counties have adopted the hybrid approach, but the waiver system is still creating confusion and conflict.

Last fall, a dispute over the waiver process involving a St. Clair County family blew up into a local controversy, and school officials asked local law enforcement to get involved.

Although the family lived in St. Clair, the children attended high school in neighboring Macomb County. Macomb had already switched to the hybrid model, but the parents didn’t want to file the documents, because they didn’t want their children’s vaccination status to be known by local health officials at all.

The father, Andrew Eberly, said at a that getting a certified waiver “forces parents like me to register personal health decisions” with an agency they don’t trust. (Eberly did not respond to multiple attempts to contact him via email, via phone, and at his home.)

At one point during the ongoing conflict, school officials asked the sheriff’s department to intervene. A deputy’s conversation with Eberly on Nov. 5 was captured in body-camera footage obtained by Ñî¹óåú´«Ã½Ò•îl Health News through a public records request.

The deputy described the counseling requirement as a set of “stupid hoops.”

“I know it’s super inconvenient to go into the health department, go through their stupid 10-minute class for them to tell you something you already know, to sign the waiver,” the deputy said.

But the deputy went on to warn Eberly that if they continued taking their kids to school, despite being repeatedly informed they couldn’t be enrolled without a state-recognized waiver, then they could be charged with contributing to the truancy of minors.

The clash became a local cause célèbre. Nevin, the St. Clair medical director, seized on it — and the state’s falling immunization rates — at a public health board meeting as proof that people who mistrust the state’s public health establishment “have sound reasons for doing so.”

So far, state health officials have declined to engage in verbal or legal conflict with Nevin, who has drawn cheers and jeers at public meetings over his vaccine stance. He has also been the subject of at the county health department.

Instead, state officials are stressing the importance of parents understanding the risks that vaccine-preventable diseases, like measles, pose for their kids.

“Local health departments get to decide for themselves in a lot of ways what’s best for their residents,” Malosh said. “And I think that what’s best is to be as upfront as possible, to be as truthful as possible, and to try to give the best information that we have available to us to parents so that they can actually make an informed decision.”

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A patient from his rural Northern California county , a disease so rare there that many physicians have never treated a case.

While California has some of the strictest vaccine laws in the country, conservative Shasta County’s approach during the covid pandemic stood in stark contrast with the state’s guidance. Its local leaders opposed masking and vaccine mandates, and the county public health officer, who had sought to enforce those state policies and other safety measures.

A potential measles outbreak had “always been in my mind,” said Mu, an outspoken family physician who was to sign a opposing covid vaccine mandates. But Mu, the county’s current public health officer, said that when his department identified the first local measles case, it acted decisively: “We forgot about fear.”

They went to work, he and his team said, to painstakingly retrace the steps of sickened with measles, contacting more than 600 people who may have been exposed at Costco, a sushi restaurant, sporting events, a school, or a healthcare clinic. Just one of the nine contracted measles from one of those locations, while the others were characterized by the public health department as “close contacts.”

Two and a half months later, the Shasta County public health department had declared the measles outbreak over. Infectious disease experts say the rapid response executed in the mostly rural, vaccine-hesitant county offers a playbook for public health officers across the nation who are struggling to keep the highly contagious virus from spreading.

“To me, the story of Shasta is one of hope,” said Peter Chin-Hong, an infectious disease specialist at the University of California-San Francisco.

After more than a year of ongoing cases, measles has sickened more than in the U.S., according to the Centers for Disease Control and Prevention. For the first time in two decades, the U.S. is poised to lose its measles elimination status, a designation signaling that outbreaks are rare and rapidly contained.

673 measles cases as of late May while had seen at least 997, according to their state health departments. 74 cases.

Critical Rapid Response

In late January, when Shasta County identified the first case, Mu gathered with more than a dozen communicable-disease nurses, epidemiologists, and emergency and community relations staffers for an “initial threat assessment meeting.”

Measles is an that can linger in a room for two hours after an infected person leaves, so on-call nurses and responders faced a daunting task figuring out exactly when the patient was infectious and where they had been.

“Everything is about speed — speed in identifying the person and finding the sites where measles were occurring,” Chin-Hong said. “If you keep it down to a few cases, it’s much easier. If you wait just a little bit longer, those people would have been in contact with a lot more people.”

Roughly 9 in 10 unvaccinated people exposed to the virus become infected. All nine of Shasta County’s confirmed cases were people who were unvaccinated or had unknown vaccination status, according to the county’s public health department. Before the department called families who may have been exposed, county nurses sometimes enlisted school principals, church staff, clinic managers, or others to make first contact, said Daniel Walker, the county’s supervising epidemiologist.

Erika Piper, the head of Redding Christian School in Palo Cedro, talked to school families wary of requests by public health officials — and government in general — to provide immunization records or other personal information. She said she also had tough but respectful conversations with families to ensure exposed, unvaccinated kids stayed home from school, so their community could abide by public health guidance calling for .

“I would say to them: ‘That’s totally fine. You have a choice. You’ve made your choice. But there are still consequences to the choices we make,’” Piper said, referring to families who had opted not to vaccinate their children. “‘And so you can either be a willing helper and a partner with me in this, and we can make it work and get through it, or you can battle me on it. But either way, you can’t be in school.’”

She allowed work to be sent home to quarantined students and personally took daily attendance at the school to help ensure health guidelines were met.

The California Department of Public Health assisted with case investigation by making calls to exposed people at the county’s request and deployed a covid-era phone system, CalCONNECT, that automates symptom monitoring for exposed contacts.

Shasta officials warned people not to be wary of calls from contract tracers using a 279 area code, worrying they would dismiss them as scams.

Delicate Conversations

In Shasta County, the measles vaccination rate is just below the for community-level protection, but in pockets of the community the rates are lower and vary widely, according to . And in those vulnerable places, an outbreak can spread.

For example, more than a quarter of Shasta schools had rates below 95% in 2024-25, according to the latest state data available. Several were below 90%. Although Redding Christian School reported a kindergarten measles vaccination rate at or above 95% in 2024-25, it was 87.8% three years earlier.

When it came to talking to people who had been exposed to measles, Sharayne Loomis, a supervising public health nurse on Shasta’s communicable-disease team, described the department’s approach as “meeting people where they are.” That included nonjudgmental conversations that supported residents regardless of their stance on vaccination, Loomis said.

Mu said the same philosophy extended across the county’s health agencies, but he publicly “measles parties,” gatherings where unvaccinated children are intentionally exposed to build immunity. And he spoke against receiving high doses of vitamin A without medical supervision. Vitamin A has circulated as a measles treatment in vaccine-skeptical communities and was endorsed last year by Health and Human Services Secretary Robert F. Kennedy Jr., though the CDC website says that vitamin A “does not prevent measles and is not a substitute for vaccination.”

Some community members said Mu’s department could have been more proactive before the outbreak, imploring him to emphasize the importance of vaccination in public messaging.

“Clearly, when the situation was known to be coming into our communities, that would have been a time to advise for vaccines,” Steve Kahn told county supervisors at their February board meeting. “I think he was negligent in that.”

For years, public health has been a political flash point for the region. The Board of Supervisors fired the previous public health officer, Karen Ramstrom, in May 2022 after upset with her enforcement of state covid rules.

In an effort to reach vaccine-hesitant Californians, state officials have been working in a coalition called Public Health for All Californians Together and through an effort nicknamed that uses social media monitoring and other research to tailor messaging to skeptical viewers.

Erica Pan, director of the California Department of Public Health, said the state is preparing for measles to possibly surge when it hosts World Cup soccer matches starting in June, as well as with increased summer travel.

But when it comes to mitigating an outbreak in a community, public health officials say, residents — especially those skeptical of vaccines — need to hear from the people they know.

“Trust is very important for us,” Mu said. “It is critical in getting people to follow our guidance, especially during an outbreak.”

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A bill in March then by Democratic Gov. Jared Polis allows Colorado to further uncouple itself from federal guidance.

The law allows health officials to follow the recommendations of national medical groups when making decisions such as purchasing bulk vaccines for the Medicaid program.

“We are insulating our state from the dysfunction coming out of Washington,” said Democratic state , a co-sponsor of the bill and a registered nurse. “We’re going to rely on science.”

“From fighting during the pandemic for Coloradans to get vaccines as quickly as possible to combating the Trump Administration’s barriers to getting vaccinated, we have expanded access to vaccines for Coloradans who want them,” Polis said in a statement when he signed the law.

Colorado is one of that, along with Washington, D.C., have taken steps to bypass the new federal recommendations amid worries that the changes could chip away at public trust in vaccines and erode .

Previously, Colorado, like most states, had followed federal guidance set by the Centers for Disease Control and Prevention. In January, CDC advisory panelists, selected by Health and Human Services Secretary Robert F. Kennedy Jr., from the agency’s universal recommendation list.

Last year, doctors, scientists, local leaders, and other supporters came together to form an outreach and advocacy coalition called .

The group aims to offer a clear, unified voice on the proven benefits of vaccines and reassure residents confused by the many federal changes.

, a former Denver City Council member, joined the group because she wants more people to hear her own chilling story about vaccine-preventable illness.

“Every summer everybody got sick,” Boigon said, recounting her childhood in 1950s Detroit.

The illness was polio, a highly contagious viral disease that , sometimes causing partial or full paralysis.

During the summer of 1953, “the whole block was sick and some of us got crippled, and that was just the way it was,” she said.

New Group Steps Up

Boigon’s personal history will be part of the new generations about the dangers of infectious diseases that were once common in the U.S. but are now relatively rare.

The group, which formed last September, will also compile vaccine information from medical groups and the state health department and advocate for policy proposals with the state government.

“It was in direct response to the federal threats,” said another coalition member, former state lawmaker . She leads the nonprofit .

Another member, public relations specialist Elizabet Garcia, wants more outreach to Hispanics, whose vaccination rates .

“A lot of time it’s this fear that they’re going to have to pay out-of-pocket, that their insurance doesn’t cover it, that they might not even have insurance in general,” Garcia said.

Boigon was 5 when she got sick and was hospitalized for six weeks with a fever. The virus attacked her spine.

“None of my limbs worked immediately afterwards,” Boigon said.

Although she regained function in her other limbs, her right arm never fully recovered. She had to adapt, relearning everyday tasks such as reaching out to shake hands with people with her left hand.

In 1955, not long after she got sick, the new polio vaccine became more widely available to the public. As vaccinations took off, U.S. cases of polio, once one of the nation’s most feared diseases, .

Increasing Public Trust

State leaders have taken other steps to promote public health. After the Trump administration pulled the U.S. out of the World Health Organization, several states, including Colorado, the WHO’s Global Outbreak Alert and Response Network on their own.

Colorado also challenging the Trump administration’s changes to the childhood vaccine schedule.

And the new state law has provisions besides allowing the state to diverge from federal recommendations. It codifies pharmacists’ ability to prescribe and give vaccines themselves. It also increases legal protections for healthcare workers who give vaccines.

“This law will provide more clarity to guide all Coloradans, including providers who administer vaccines,” Lontine said.

But the legislation has opponents who say it would interfere with parental choice and claim vaccines might be unsafe or ineffective.

“I just want to make sure we’re not just getting into a big political dispute between the federal recommendations — the CDC and so forth — and different political views in Colorado here,” said Republican state , who voted against the vaccine bill.

NPR contacted the U.S. Department of Health and Human Services about Colorado’s new law. Spokesperson Emily Hilliard answered in an email: “The updated CDC childhood schedule continues to protect children against serious diseases.”

Preventable Illnesses Surge

The flurry of statewide activity comes as Colorado and the nation have seen surges in illnesses .

As of mid-May, Colorado had recorded 22 measles cases this year. In 2025, it registered , according to the state health department, far surpassing totals from previous years.

Across Colorado, for measles were 88% last school year — with only a few counties achieving rates of 95%, the level needed for herd immunity, according to data in December.

This has also been Colorado’s worst flu season in recent years.

Vaccination rates for both flu and covid-19 have dropped slightly in Colorado, according to the state health department.

Eight children in Colorado have died this season ; one from covid; and one from RSV, or respiratory syncytial virus. are available for children and recommended by the state’s health department.

Kennedy, a longtime anti-vaccine activist, has defended his decisions to overhaul the recommended schedule for childhood vaccinations.

In March, a federal judge many of the changes.

“We’re not taking vaccines away from anybody. If you want to get the vaccine, you could get it. It’s going to be fully covered by insurance just like it was before,” Kennedy in January.

When a reporter suggested the new changes could result in fewer people getting a flu vaccine, Kennedy said: “Well, that may be, and maybe that’s a better thing.”

Boigon is sometimes incredulous at everything that has happened.

“It’s like we’re going backwards,” she said. “It’s like we have decided we don’t want a modern life; we want to be back in the 1950s, where children are sick and dying.”

This article is from a partnership that includes ,Ìý, and Ñî¹óåú´«Ã½Ò•îl Health News.

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Aaby and his partner, Christine Stabell Benn, believed that the years of research in the impoverished country had yielded a major discovery about vaccines — and what they described as “non-specific effects”: The measles and tuberculosis vaccines, which were derived from live, weakened viruses and bacteria, they said, boosted child survival beyond protecting against those particular pathogens.

But, the scientists said, shots made from deactivated whole germs, or pieces of them, such as the diphtheria-tetanus-pertussis shot, caused more deaths — especially in little girls — than getting no vaccine at all.

The World Health Organization repeatedly and inconclusively examined these astonishing findings, which tended to elicit shrugs from the researchers’ colleagues in global health.

Then came Donald Trump, covid, and the administrative reign of anti-vaccine advocate Robert F. Kennedy Jr.

Suddenly, Aaby and Benn weren’t just sending up distant smoke signals from a far corner of the planet. They were and policy prescriptions online and in medical journals. The “framework” for “testing, approving, and regulating vaccines needs to be updated to accommodate non-specific effects,” their team wrote in .

And the Trump administration has taken notice.

“They became more strident in saying that their findings were real and that the world needed to do something about it,” said Kathryn Edwards, a Vanderbilt University vaccinologist who has been aware of Aaby’s work since the 1990s. “And they became more aligned with RFK.”

Kennedy, as secretary of the Department of Health and Human Services, to justify slashing $2.6 billion in U.S. support for Gavi, a global alliance of vaccination initiatives. The cut could result in 1.2 million preventable deaths over five years in the world’s poorest countries, the nonprofit agency has estimated. Kennedy has in current Gavi funding over largely debunked vaccine safety claims.

Kennedy described as a “landmark study” by “five highly regarded mainstream vaccine experts” that found that girls who received a diphtheria-tetanus-pertussis, or DTP, shot were 10 times as likely as unvaccinated children to die from all causes.

In fact, the study was far too small to confidently make such assertions, as Benn later acknowledged. In a study of historical data that included about 500 girls, four of those vaccinated against DTP in a three-month period of infancy died of unrelated causes, while one unvaccinated girl died during that period. A in 2022 found that the DTP shot by itself had no effect on mortality. Critics say the 2017 study, rather than being a landmark, exemplified the troubling shortfalls they perceive in the Danish team’s research.

As Aaby and Benn’s U.S. profile has risen, scientists in Denmark have set upon the work of their compatriots. In news and journal published over the past 18 months, Danish statisticians and infectious disease experts have said the duo’s methods were , even , and structured to support . A national scientific board is investigating their work.

Stensballe, who worked with Aaby and Benn for 20 years, has been among those voicing doubts.

“It took years to see what I see clearly today, that there is a strange concerning pattern in their work,” Stensballe said in a phone interview from Copenhagen, where she treats children at Rigshospitalet, the city’s largest teaching hospital. She said their work is full of confirmation bias — favoring interpretations that fit their hypotheses.

Those hypotheses overlap, in important areas, with the notions of Kennedy and other vaccine-skeptical officials at HHS.

In December, HHS announced the agency would award the scientists’ Bandim Health Project in Guinea-Bissau $1.6 million to study whether the birth dose of hepatitis B vaccine weakens babies’ immune systems or causes neurological issues.

The researchers plan to withhold the vaccine from half of the 14,000 newborns in the study, although the long-established vaccine is 90% effective in preventing infection. The Bandim group justifies this decision by noting that impoverished Guinea-Bissau does not yet routinely vaccinate infants against hepatitis B. Given that 1 in 5 Guinea-Bissauan adults carry the hepatitis B virus, however, and many say it is unethical to withhold the birth dose.

Aaby and Benn did not respond to repeated requests for comment. They have elsewhere.

A Mixed Reputation

Many Danes admire the two for their decades of work in Guinea-Bissau, a nation of over 2 million people where, as in much of Africa, infant mortality has plunged over the past five decades. There’s even a novel, the 2013 Danish thriller The Arc of the Swallow, featuring a corporate plot to murder a scientist character clearly based on Aaby. The company’s goal: to keep him from publishing data showing deadly effects from the DTP shot. Benn the idea for the book.

Aaby and Benn have trained around 30 scientists through their Bandim Health Project, named for a district of Bissau, Guinea-Bissau’s capital. The research group has published over 1,000 academic papers and won scientific prizes. The Danish king knighted Benn last year. Their notion of non-specific vaccine effects gained enough traction to merit a short chapter in the 2023 edition of Plotkin’s Vaccines, the authoritative text of vaccinology.

Yet Danish health authorities have never followed Aaby and Benn’s vaccine advice. They still offer vaccines based on inactivated viruses and bacteria, that Kennedy largely shifted the U.S. to in January. (A federal judge on March 16 temporarily blocked those changes.) Danish vaccine authorities are considering the addition of two of the shots Kennedy sought to drop from the U.S. schedule — against rotavirus and respiratory syncytial virus, or RSV.

“What’s important is that Christine doesn’t have influence on our vaccine policy,” said Anders Hviid, chief epidemiologist at Statens Serum Institut, the Danish equivalent of the Centers for Disease Control and Prevention.

Hviid — who knows Benn, as do most members of the tiny Danish vaccine fraternity — has contributed to many vaccine safety studies, including a that found no link between measles-mumps-rubella, or MMR, vaccination and autism. Kennedy to get a journal to retract showing no link between aluminum-adsorbed vaccines and allergies or neurodevelopmental disorders.

In a with Tracy Beth Høeg, the Danish American sports medicine doctor and covid vaccine skeptic who led the FDA’s drug regulation from December until she was , Benn said she had vaccinated her son and daughter, now in their late 20s, under the complete Danish schedule of vaccines. Like the U.S. schedule, Denmark’s includes a less reactive form of the DTP shot known as DTaP.

These vaccines aren’t dangerous to kids in well-off countries like the U.S. and Denmark, she said. But she said she would “never vaccinate my child according to the U.S. program.” She singled out the hepatitis B vaccine birth dose, which her group plans to test in Guinea-Bissau, saying she was “appalled” that the CDC recommended a universal birth dose.

Kennedy’s handpicked vaccine advisory committee — which a federal judge in , questioning its members’ qualifications — withdrew the birth dose recommendation last year.

Compatriots Grow Skeptical

Kennedy’s championing of Aaby and Benn prompted criticism from Danish scientists that has extended to the . “It is disturbing that Danish researchers could carry out such actions involving African children,” Stensballe said.

As of early March, the study was paused while officials from Guinea-Bissau and the African Centers for Disease Control examined it. Public Health Minister Quinhin Nantote, who took office after a November coup in Guinea-Bissau, said in January he had no evidence that the six-member ethics committee that signed off on the study earlier had ever met to discuss it.

HHS spokesperson Andrew Nixon told Ñî¹óåú´«Ã½Ò•îl Health News the proposed study was “based on the highest scientific and ethical standards” and “represents the world’s first and perhaps only opportunity to test the overall health effects” of the hepatitis B vaccine.

It’s only one area of the couple’s research that is under scrutiny.

In 2024, Danish physician and journalist Charlotte Strøm noting that the Bandim group scientists had failed to publish data they’d collected that contradicted their frequent claims that the vaccine caused high mortality in infants.

Strøm called it “an ethical and scientific scandal,” and it led to an by the news outlet Weekendavisen. In February, the University of Southern Denmark forwarded its probe into the duo’s possible withholding of DTP data to the Danish Agency for Higher Education and Science’s Board on Research Misconduct.

In response to the Weekendavisen articles, Aaby and Benn pushed out a . They said they hadn’t sought to publish it earlier because one co-author died in a boating accident and another left the project after getting pregnant.

“This is a bit fishy,” said Henrik Støvring, a statistician at the University of Southern Denmark and Aarhus University who co-authored with Strøm and others an of clinical trials conducted by Benn and Aaby.

In January, a and three other Danish infectious disease researchers questioned whether Aaby and Benn had actually proved that vaccines had bad or good “non-specific effects” beyond preventing the diseases they were designed to counter.

Scholars also have questions about Aaby and Benn’s studies of the tuberculosis vaccine, BCG. The pair recently began a study in which babies received a second vaccination with the live bacterial vaccine, although a they conducted some 15 years earlier was stopped after , compared with four in the control group, during a four-month span.

The study was aimed at testing Aaby and Benn’s hypothesis that the alleged dangers of DTP vaccination could be ameliorated by a shot soon after with live BCG.

Although there is some evidence that BCG provides a systemic boost to infant immune systems, the WHO does not recommend a second BCG dose, Vanderbilt’s Edwards noted. “Given the suspicion engendered with this group, there should be heightened attention to this protocol, with meticulous review of their work in Africa by the African authorities,” she said.

The Big Controversy

Aaby and Benn’s most controversial position is their stance on DTP, perhaps the most widely provided vaccine in the world. True evidence of its harm would be vitally important. And experts argue that research by others has not supported Benn and Aaby’s thesis.

One involving nearly 55,000 newborns in Ghana and Tanzania, found that both BCG and DTP vaccines enhanced the survival of babies. The authors of the paper submitted it to a journal and fought long and hard with Benn, who happened to be a peer reviewer. They eventually resubmitted the paper to another journal to get it published in 2022, said co-author Emily Smith, an assistant professor of global health at the Milken Institute School of Public Health at George Washington University.

Benn’s approach “involves splitting up trial data a bunch of different ways using a bunch of different methods,” she said.

“If you split up the data” enough ways, she said, “you’re going to end up with maybe thinking you found something.”

Hviid said that Benn and Aaby continuously modify their hypotheses to fit new data even when the patterns they detect may have popped up by chance. Most of the footnotes in their studies and opinion pieces refer to their own work, he noted.

“They’ve been talking about their paradigm for years,” Hviid said. “But when you look at the numbers, it’s just a house of cards. There’s nothing there.”

To examine their many hypotheses about the interactions of vitamins and vaccines, “hundreds of thousands of African babies have been tested,” Stensballe said. “Is that ethical?”

Aaby and Benn asked the editors of the journal Vaccine to retract Strøm and Støvring’s paper. The request was denied.

The Danish Influence in America

The Bandim group’s influence on U.S. policy has roots in the covid pandemic, when Benn befriended Høeg, who had earned a PhD in epidemiology and public health from the University of Copenhagen in 2014 for a study of eye disease. In a series of YouTube videos, they bonded over skepticism about covid vaccines and lockdowns. Benn argued that mRNA vaccines were insufficiently studied and that covid should be allowed to run its course among kids. Høeg landed an adjunct professorship at the University of Southern Denmark, where Benn holds a senior position, in April 2023.

Høeg did not respond to a question about whether she was involved in the CDC decision to fund Benn’s hepatitis B study. Benn and Aaby also received $1.8 million from the Pershing Square Foundation, co-founded by Bill Ackman, an ally of President Trump who .

Ackman did not respond to requests for comment.

from the University of Southern Denmark showed that Benn secured the grant after communicating with anti-vaccine CDC officials Lyn Redwood and Stuart Burns around the time the agency’s Advisory Committee on Immunization Practices was preparing to stop recommending hepatitis B vaccination for U.S. newborns.

Yet during a public debate with Støvring on Dec. 4, Benn said news reports had dried up all funding for her research. “You have literally closed our field station,” she said.

Aaby’s History

An anthropologist by training, Aaby, 81, has cultivated the image of a persecuted Galileo, Hviid said, “with us in the role of the dogmatic clergy.”

Aaby wrote in 1998 that he was “exploring and making sense of the unknown” while most of his colleagues’ work was “trivial.” At the December debate, he said Støvring’s work was “incredibly stupid.”

The Bandim Health Project’s study area covers six poor districts, now with about 200,000 inhabitants, around a third of the capital. The researchers say they have collected health and socioeconomic data from residents for more than 30 years.

Stensballe’s conflict with Benn and Aaby came to a head in 2015 as the team of 4,262 Danish babies comparing those who got a BCG vaccine at birth with those who didn’t. that his African research on vaccines would be duplicated in the developed world.

The Danish BCG study showed no difference in hospitalization rates between the two groups. But Benn and Aaby combed the data for other answers, known as secondary findings, and leaped upon a comparison that showed lower hospitalization rates in babies whose mothers had been vaccinated against BCG decades earlier, Stensballe recalled.

She found that troubling. “If the primary outcome is negative, the trial is negative,” she said.

The manner in which Aaby and Benn pose questions sows unnecessary doubt, said Arthur Reingold, a professor emeritus of epidemiology at the University of California-Berkeley.

“Some of the questions they propose to answer are important but can never be answered in my lifetime,” he said, “and not by an ethical study done in the real world.”

“And in the meantime,” he added, “babies will miss vaccines and get sick and die of preventable illness.”

This <a target="_blank" href="/public-health/rfk-kennedy-vaccines-denmark-danish-scientists-africa-aaby-benn-dtap-dtp/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

Ñî¹óåú´«Ã½Ò•îl Health News chief Washington correspondent Julie Rovner discussed federal policy on vaccine research, vaping, and drug access on Science Friday on May 8. Rovner also discussed the Supreme Court decision on the abortion pill mifepristone on NPR’s Morning Edition on May 5.

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Céline Gounder, Ñî¹óåú´«Ã½Ò•îl Health News’ editor-at-large for public health, discussed the rising cost of drug prices, despite hopes about TrumpRx, on CBS News’ The Daily Report on May 7.

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This <a target="_blank" href="/on-air/on-air-may-16-2026-vaccines-vaping-mifepristone-trumprx/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">