SALT LAKE CITY — Ben Dowse hadn’t expected to treat measles when he became a doctor, but there he was, examining a newborn exposed to the virus in the womb. The infected mother had given birth just hours earlier. The hospital had alerted Dowse to the case before delivery, and he’d braced himself for the worst.

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 KFF 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 drop nationwide, 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 genetic analysis 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 can cost more than $33,000 per patient. Health departments spend millions trying to curb infections.

A woman sits at a table in front of a children's playground.
Emilie Morris, a hospital pediatrician in Utah, has cared for multiple unvaccinated children who were severely sick with measles. She’s learning how to communicate with parents who hadn’t expected the virus to cause so much harm. (Amy Maxmen/KFF Health News)

“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 vaccine-hesitant communities, produces movies, and has bought advertisements on Facebook that downplay the threat of viruses while wildly exaggerating the risk of vaccine side effects. Kennedy’s words and actions 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’

A view of rocky formations along a road leading into a town in southwest Utah.
A view of St. George, a city in southwest Utah that’s been hit hard by an ongoing measles outbreak that started in August. Nearly 40% of the state’s cases have occurred in the region. (Amy Maxmen/KFF Health News)

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 KFF 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. Large studies published 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 tend to be mild and are relatively rare. Only 4% of 4,300-plus U.S. cases reported this year and last have been 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.”

A photo of vaccines stored in a refrigerator.
The Southwest Utah Public Health Department stocks vaccines against measles, whooping cough, tetanus, hepatitis B, and other diseases. (Amy Maxmen/KFF Health News)

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 were adequately immunized 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 KFF Health News that “alternative health” or “wellness” drives the trend, rather than religion. The state has a thriving supplement industry, worth $6.1 billion in 2023, 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 scholarly articles and industry analyses.

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

“People are suspicious, and it’s well founded,” Draper said. She described dismissive doctors, exorbitant medical bills, hospital systems that put profits over care, and pharmaceutical companies that drove opioid addiction. 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 pickup truck tricked out with digital billboards showed up to covid vaccination sites to advertise Plandemic, a 26-minute viral video rife with conspiratorial claims, 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.

A woman stands outside a building. A sign next to her reads, "288 Department of Health and Human Services."
Utah state epidemiologist Leisha Nolen says that with a larger budget she would invest in connecting with communities. “We have a scientific solution,” she says about measles, “but we need a societal solution, too.” (Amy Maxmen/KFF Health News)

One of the most contagious diseases in the world, measles spreads with astonishing speed among the unvaccinated. One meticulous study 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 recent report.

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.”

A photo of a nurse standing by a folding table inside of a school.
Anna Fajardo, a public health nurse, offers vaccines at a school registration event in Milford, in southwest Utah. A few mothers trickled in to get their children immunized or to find out their child’s vaccination status. (Amy Maxmen/KFF Health News)

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.

A photo of an LDS temple: a large white church. People are gathered in front of it, some of them holding umbrellas to protect from the sun.
The new Lindon Utah Temple, belonging to the Church of Jesus Christ of Latter-Day Saints, was one of many locations listed as a potential measles exposure site in April by the Utah Department of Health and Human Services. (Amy Maxmen/KFF Health News)
A photo of a Trader Joe's parking lot. Mountains are seen peaking out from behind the building.
A Trader Joe’s in Orem, Utah, was also listed as a potential measles exposure site that month. (Amy Maxmen/KFF Health News)
A photo of a university building with several electric scooters parked in front of it.
A science building at the University of Utah in Salt Lake City was also among the potential exposure sites listed in April. (Amy Maxmen/KFF Health News)
An exterior shot of a Utah Valley University building with mountains seen behind it.
Many measles cases traced back to a high school wrestling tournament at Utah Valley University in Orem in February. (Amy Maxmen/KFF Health News)

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 erase the immune system’s memory, 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 hearing loss, a small percentage die, and in rare cases, 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.

A photo of a baby in a carrier sleeping. Next to it is a play mat and a chair.
Emily Chin’s 4-month-old, sleeping here at home, is too young to be vaccinated, and Chin, a doctor in Salt Lake County, Utah, worries that she might acquire measles at work and pass it to him. (Amy Maxmen/KFF Health News)

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 online petition 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 KFF 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 lose its measles elimination status 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.”

A sign in front of a hospital reads, "Please tell us immediately if you are not vaccinated against Measles and have the following symptoms: fever and two or more of the below — cough, rash, recently exposed to measles, runny nose, red and runny eyes, white spots in mouth."
A sign outside a hospital in southwest Utah warns people who haven’t been vaccinated against measles to wait outside if they have a fever and other symptoms, such as coughing or a runny nose. Vulnerable people, including infants too young for vaccination, have been exposed to measles at hospitals and clinics. (Amy Maxmen/KFF Health News)

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 not true. He continues to tout a potential link between autism and vaccines, no matter how many studies conclude there is none. And he oversaw abrupt changes to the recommended childhood vaccine schedule, a move medical societies 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 Deseret News. Cox declined to comment for this article.

Meanwhile, the chronically depleted 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.”

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

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HealthQ’s Cara Anthony and Blake Farmer share know-how for parents navigating the decision to seek out mental healthcare for a child.

(Candice Evers for WPLN and KFF Health News)

Divorce rocked the lives of Marcela Cabay and her daughter, who was a preschooler at the time. But counseling didn’t come until years later, when Cabay noticed her daughter was tensing up every time a storm rolled through or whenever they were preparing to be apart.

“She was experiencing just a lot of anxiety, really starting to think worst-case scenarios all the time, just really struggling in her daily life,” said Cabay, who is a life insurance broker outside Austin, Texas.

At first, Cabay attempted to help her daughter herself. She suggested coping strategies for the 8-year-old to regulate her emotions. She hoped the behavior would pass. But, over time, the anxiety got worse.

“That’s when I finally was like, ‘I think it would be really good for her to talk to a licensed third-party person — that’s not me,’” Cabay said.

Her daughter’s counseling journey started off shaky because she was seeing a counselor weekly for two months with no results, while paying out-of-pocket. So they found a counselor who was a much better fit. Within six months, Cabay’s daughter had made so much progress that Cabay decided to suspend her weekly visits.

Determining when it’s time for professional help can be hard, especially because counseling can require a significant commitment of time and money. Therapists offer three easy-to-remember criteria to help assess challenging behavior: frequency, duration, and intensity.

1. Frequency: Is the behavior happening over and over?

Frequency is the easiest of the three to measure. Say you roll up to the park to find a hive of activity on the playground, but your child refuses to get out of the car because they’re anxious about playing with other kids. If it happens once or twice, it could be because they had a hard day and weren’t ready to be with other kids, said licensed clinical social worker and play therapist Paris Goodyear-Brown. But avoidance behavior that occurs regularly indicates a child may need extra support.

2. Duration: Does the behavior last a long time?

Goodyear-Brown is clinical director of Nurture House in Franklin, Tennessee, where parents often come with concerns when their children start preschool and are anxious about saying goodbye to them, she said. Some amount of separation anxiety is developmentally appropriate. If it regularly lasts hours, however, she generally recommends pulling in professional support.

“The child may be crying, ‘Mommy, don’t leave me,’ but as soon as the parent has departed, they enjoy the day and they’re engaged with their teachers,” she said. “That’s a really different presentation than the child who cries for three hours at school, is inconsolable, and isn’t able to learn.”

3. Intensity: Does the behavior disrupt everyday life?

Intensity can be harder to quantify because it’s less likely to be measured in hours or days. Goodyear-Brown offers obsessive-compulsive behaviors as an example: If a child won’t leave the house without making sure all their toys are lined up just right or checking 10 times to make sure the doors are locked before bed, their behavior signals a need for professional help.

Children can also show intensity in their lack of emotions. “To be numbed out, shut down, dissociated, it’s just as big,” she said. “It’s just quieter.”

Goodyear-Brown said some life events are intense enough to merit counseling even if a child isn’t behaving differently, including those considered one of the 10 “adverse childhood experiences.” ACEs, as they’re more commonly known, include child abuse, neglect, suicide or depression in the household, or divorce.

Guidance, Not Certainty

Ultimately, the three criteria help parents assess whether behavior is overly disruptive to daily life. Becky Evans, a licensed professional counselor supervisor in Fort Worth, Texas, advised being on alert for the times when “you are not able to go and do what you would normally go and do because of whatever is happening with them emotionally.”

But whether the verdict points to counseling also depends on household dynamics and family history.

“It is kind of subjective to the person. What feels frequent? What feels intense? And how long is too long for this to have been going on?” Evans said.

When in doubt, she said, therapy is usually helpful. And parents can also benefit from having a “teammate,” to ensure they’re not inadvertently reinforcing the anxiety, Goodyear-Brown said.

However, some psychologists have raised concerns about “pathologizing” children or interpreting routine struggles as disorders. Parents can be quick to think developmentally appropriate behavior is abnormal, said Christina Confroy, a licensed marriage and family therapist in Nashville, Tennessee. During consultation calls, she’s grown comfortable telling parents when she doesn’t see a need for counseling while also urging them to “trust their sense.”

People and Policy

Like many counselors across the country, Confroy has stopped accepting health insurance. For her, the decision hinged on the requirement to make an official diagnosis in order to get paid. The administrative burden and low reimbursement rates have driven many others to leave insurance networks behind.

Paying for counseling out-of-pocket averaged nearly $150 per session in 2023, according to research published in Health Affairs Scholar. Confroy charges $195 per 50-minute session. She lowers the fee when the need arises, she said.

“People don’t plan for counseling the way they plan for groceries. It’s an enormous responsibility financially and time-wise,” said Confroy, who often recommends school-based counseling and other lower-cost first steps.

“You might not want another podcast to listen to or a book to read,” she said. “But I’m really big on accessing existing support.”

This installment is part of HealthQ’s reporting on caregiving in the Sandwich Generation. For more, check out the series archive.


Katherine Ruppelt and Emily Siner at Nashville Public Radio contributed to this report.


HealthQ is a health series from reporters Cara Anthony and Blake Farmer, approachable guides to an unapproachable healthcare system. It’s a collaboration between Nashville Public Radio and KFF Health News.

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

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

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

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

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

“My energy is really limited,” she said.

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

‘A Breakthrough Moment’

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

A similar law is slated to take effect in September in Illinois, which would become the 13th state (plus the District of Columbia) where medical aid in dying is legal.

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

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

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

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

‘You Need A, B, and C’

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

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

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

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

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

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

All but two states require patients to be residents. Oregon and Vermont scrapped their residency requirements to settle lawsuits brought by Compassion & Choices. (Courts ruled against a similar suit in New Jersey.)

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

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

Hotly Debated, Seldom Used

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

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

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

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

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

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

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

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

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

The New Old Age is produced through a partnership with The New York Times.

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

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His five-volume “Children of Crisis” series, published between 1967 and 1977, drew on his conversations with American children whose voices were not often heard.

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Health Secretary Robert F. Kennedy Jr. has demonstrated little interest in managing his sprawling department as he focuses on food and vaccine policies, according to colleagues.

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

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


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Mining has been the lifeblood of this remote Congolese hill town for decades. Now, it is fueling the spread of a devastating outbreak.

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

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

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

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

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

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

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

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

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

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

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

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

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

Dilapidated Labs

Researchers at Congo’s National Institute of Biomedical Research had built a sophisticated molecular biology laboratory for surveillance in Goma, the country’s eastern economic hub. But the lab stopped functioning last year after the Rwandan-backed armed group M23 violently seized control of Goma and shuttered its airport, stunting the flow of international aid.

An armed guard stands in front of a building behind a barbed wire fence. A medical worker wearing a gauze cap, mask, and gown, looks at the building.
A soldier with the armed group M23 stands guard outside a molecular biology laboratory in Goma, in the Democratic Republic of Congo. The lab, built by Congo’s National Institute of Biomedical Research, stopped functioning after M23 seized the city last year, but the group is now cooperating with aid organizations to get the lab running and supply hospitals. (Jospin Mwisha/AFP via Getty Images)

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

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

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

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

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

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

Conflict Aids Ebola’s Spread

Violence abets Ebola in other ways. As the outbreak was silently spreading in Ituri in late April, nearly 200 people caught in the crossfire of armed groups fled, potentially carrying the virus with them. South of Ituri, Maurice Kakule Mutsunga, a doctor at a large general hospital, said he’s seen a surge of people injured or killed by members of the Allied Democratic Forces, an armed group linked to the Islamic State. “Every day this week we’ve received patients massacred by the ADF,” Kakule Mutsunga said in French, adding that bodies carried into the hospital have been decapitated by machetes.

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

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

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

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

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

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

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

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

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

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

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

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

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

A woman walks out of a tent set up during the Ebola outbreak in Congo.
Déborah Nzale leaves her shelter on May 28 in a camp for people displaced by violence in Ituri province. (Glody Murhabazi/AFP via Getty Images)

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

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

Chloé Fostier Hernández helped translate interviews for this report.

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

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Researchers relied on a newer gene-editing technique that may make it possible to engineer embryos, a prospect that has long alarmed bioethicists.

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He mapped the herpes simplex virus genome, revealing how it invades cells. His work also helped lay the groundwork for potential vaccines and gene therapies.

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

The Department of Health and Human Services is seeking data from little-known state systems that allow hospitals and clinics to exchange detailed, identifiable patient information, KFF 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 KFF 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 later disputed was underway.

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 vaccine critic whom Kennedy hired as a senior adviser — have led the initiative for the health department to collect and examine medical records.

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

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

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

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

Last June, Behm and leaders of other state exchanges met with Kennedy’s top advisers to discuss sharing more medical data with federal agencies. The state organizations followed up with a pitch in October for a new surveillance system that would give the federal health department “real-time, 24-hour data feeds on opioid and chronic disease trends” within a year, according to a presentation reviewed by KFF 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 most hospitals and health systems 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 KFF 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 Epidemiology and Laboratory Capacity program, 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 $420,000 a year — 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.

Dan Jernigan shakes the hand of a man off screen outside of the CDC headquarters.
Former CDC official Daniel Jernigan greets a supporter after resigning from the agency on Aug. 28. (Elijah Nouvelage/Getty Images)

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

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

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

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

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

KFF Health News data reporter Maia Rosenfeld contributed to this article.

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

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