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Nearly every Tuesday for a decade, Steve Siple attended a bar trivia night with friends in Birmingham, Alabama. After moving to North Carolina, he developed a new ritual — on Saturdays to pick up trash along the city’s light rail.

These are more than fun outings to Siple. They help keep him alive.

Siple has battled suicidal thoughts in the past. He lost his father to suicide, and one of his sons has struggled with thoughts of hurting himself.

That’s made Siple vigilant about protecting himself and his family. In addition to seeing a counselor regularly and speaking openly about mental health, he prioritizes social connection.

“Loneliness was, over my lifetime, one of the greatest risk factors” for suicide, said Siple, a for the American Foundation for Suicide Prevention.

To some, this concept may seem obvious. Yet in the overall approach to suicide prevention, it’s often overlooked. Treatment of a serious mental illness that can lead to suicide, such as major depressive disorder, often centers on medication and talk therapy with little or no consideration of factors such as social isolation or financial duress. Now, there’s a growing movement to address loneliness not just through personal choices but also through public policy.

The research is clear: Among the various complex issues that contribute to suicide, is a . It’s a for older adults, who have and for youths, for whom .

Humans are social animals. When we feel cut off from one another, our , our , and ultimately we’re (by suicide or ). An concluded that being socially disconnected is as harmful to one’s health as smoking up to 15 cigarettes a day.

And it’s getting worse.

Mental health researchers and clinicians say a variety of factors are in America, including the , such as smartphones and ; increased ; the since the covid pandemic; and .

With suicide rates remaining stubbornly high — often ranking among the in America — some advocates and people who have lost loved ones to suicide say increasing pathways to social connection could be a new frontier.

In this ongoing series, �������ýҕ�l Health News is examining new approaches to suicide prevention that shift the focus from stopping harm in moments of crisis to efforts that give people reasons to live well before they make fateful choices.

“If we want to reduce suicide rates in our country, which is absolutely essential, then a key part of that has to be fostering social connection,” said who served as surgeon general under Presidents Barack Obama and Joe Biden. “We have more than enough data to support this as being an important area of focus.”

In 2023, Murthy released the first on loneliness as a public health issue, with more than 300 supporting citations. He’s also on the topic and is touring the country discussing the value of social connection.

“To help someone else feel less alone, to help them feel seen and understood and valued,” he told �������ýҕ�l Health News, “that can be one of the most powerful interventions that we make.”

A Role for Elected Officials

Curing loneliness may seem like the responsibility of families and neighbors, people making one-to-one connections. But Murthy says elected officials have work to do, too.

They can use their bully pulpits to turn this into a mainstream issue, he said. They can create microgrants to support grassroots ideas from community entrepreneurs and invest in “social infrastructure,” he added.

That term refers to things in the community that support the development of social connection, from physical spaces, such as libraries and parks, to policies and programs, such as building public transportation and fostering volunteer groups.

“These all matter and impact whether people gather,” Murthy said.

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However, investing in public institutions and infrastructure is a costly endeavor that can seem unreasonable when local officials are struggling to balance budgets without increasing tax burdens.

That’s where creativity can kick in.

A health system and a museum in Charlotte have teamed up to for people to attend art classes or live performances together. In Tennessee, the city of Chattanooga is funding community ideas to increase connection and time in nature, where people can speak with volunteer listeners. And across the country, have popped up as places where men can work on projects side by side and discuss their mental health.

Meal Deliveries and Valentines

Marcie O’Neal knew she wouldn’t have much money at her disposal. She was hired in 2024 to lead suicide prevention efforts in the rural of western Kentucky after local leaders saw a rise in suicides among the elderly. Her grant was about $280,000 — less than .

But she knew the nine-county area had other strengths, such as dedicated meal delivery programs and high school clubs.

Drivers who drop off prepared meals to homebound residents “can be the only person that an older adult sees in the week,” O’Neal said.

The state had already been training some of those drivers to recognize warning signs of suicide among older people and alert county agencies to follow up with them. O’Neal thought there could be another component.

She reached out to high school , which focus on fostering leadership skills and volunteerism, across the nine counties and asked them to write cards that could be distributed to older residents along with meals. The response was swift, O’Neal said.

About 1,200 cards were delivered last May. They repeated the gesture in February for Valentine’s Day and again this May.

O’Neal said one of the older residents told her, “I don’t remember the last time I got a Valentine’s card.”

The students also enjoyed feeling as if they made a difference, O’Neal said. She’s helping one school set up an ongoing pen pal program with a nearby retirement community.

Locals affectionately call O’Neal “the suicide lady” — a term she considers “a badge of honor.”

Suicide prevention “doesn’t have to be sweeping huge things,” she said. “It’s a little thing you can do that can kind of snowball into more things.”

‘The Secret Sauce’

Siple, who has prioritized social connection through the trivia nights and volunteer clean-ups, felt most alone when he transitioned from a job at a commercial bank to working at home.

He spent most of his day analyzing Excel sheets, drafting grant proposals, and compiling recommendations for clients. The work felt important, but it was isolating, Siple said.

“If my wife or kids were around during the evening, I was safe,” he said. Holding meetings at coffee shops helped, too.

But when it was just him at his desk, “that’s where I got the darkest lonely feelings,” he said, including thoughts of suicide.

Breaking out of that required seeking new connections.

Siple said church was a great anchor for him and his wife — not just on Sundays but throughout the week at Bible studies and potlucks. They also go to see a variety of live music, including bluegrass and alternative rock.

“Being with folks that are into the same type of music that we’re into for a concert feels like connection,” he said.

Research suggests sports can play a similar role in some instances. At least two studies have found are associated with . The authors posit it’s because people coming together to support their team or to enjoy the event creates a sense of belonging, which is protective.

That concept resonates with , who has worked on suicide prevention efforts at the state and and helps run Sources of Strength, an upstream prevention program. Fostering that sense of belonging has played a central role in each of those initiatives, she said.

“We can’t eliminate hard stuff in our lives,” said Brummett, who lost five friends to suicide, starting in middle school.

“Belonging is really the secret sauce,” she said, “for how we, as humans, can navigate really hard things.”

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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.

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.”

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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 “.” 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 or . 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 , 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 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 among the sandwich generation. For more, check out the series archive.

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 �������ýҕ�l Health News.

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.

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‘A Breakthrough Moment’

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

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

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

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

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

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

‘You Need A, B, and C’

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

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

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

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

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

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

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

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

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

Hotly Debated, Seldom Used

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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.

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

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

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

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

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

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

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

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

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

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

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

June 2, 2026

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dilapidated Labs

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

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

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

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

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

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

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

Conflict Aids Ebola’s Spread

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Chloé Fostier Hernández helped translate interviews for this report.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

June 4

Arielle Zionts [arr-ee-ELL ZY-ence] reads the week’s news: For some older adults, the risks of certain preventive screenings might outweigh the rewards. Plus, cost spikes for Obamacare plans have consumers seeking cheaper health coverage, which is often less comprehensive.

May 28

Jackie Fortiér [FOR-tee-ay] reads this week’s news: Suicide prevention experts argue that improving Americans’ financial well-being could save lives. Plus, the Trump administration proposes looser artificial intelligence safeguards to speed innovation in healthcare.

The �������ýҕ�l Health News Minute is available every Thursday via direct download or the RSS feed.

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

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

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

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

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

Verite News and �������ýҕ�l 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.

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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.”

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, �������ýҕ�l 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 �������ýҕ�l 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 �������ýҕ�l 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.”

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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 �������ýҕ�l 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.”

�������ýҕ�l Health News data reporter Maia Rosenfeld contributed to this article.

The Trump administration’s rollout of a federal mandate that millions of Americans on Medicaid must work or risk losing health benefits will force states to scrap months of preparation, according to advocates for Medicaid enrollees and consultants advising states.

And they say an overhaul — less than seven months before states must start enforcing the requirement — will be costly.

by the Centers for Medicare & Medicaid Services dictate many granular details about how the new work requirements will play out. They cover how states should check whether Medicaid enrollees are following the rules, and how people can claim an exemption so that their health benefits don’t hinge on work, community service, or going to school.

Next year, President Donald Trump’s One Big Beautiful Bill Act could require roughly across 42 states and the District of Columbia who receive Medicaid benefits to prove they’re working or participating in a similar activity to keep their health coverage — unless they qualify for an exemption.

Much of the verification will run through state computer systems that assess whether low-income people qualify for Medicaid and other safety net programs — technology often built and run by private companies under contracts routinely worth hundreds of millions of dollars. Many of those systems have a history of errors that can cut off benefits to eligible people.

For months, states have been communicating with federal regulators and rushing to build systems to comply with the looming mandates, said Kinda Serafi, a partner at the Manatt Health consulting and legal firm. The rules released this week represent a “significant policy pivot” from what states were expecting, Serafi said.

“The administration has actually taken what we know to be a tough situation and has just made it even worse,” Serafi said. States had already committed to paying contractors tens of millions to adjust their systems.

After Trump signed his signature tax-and-spending bill into law last July, one of the most significant remaining questions was how much discretion the federal government would give states to define exemptions for people too sick to work. The “medical frailty” exemption allows a person to claim they have a health condition that prevents them from working at least 80 hours a month, as the law requires.

To qualify, a person generally must fit into at least one of five categories: They must be blind or disabled; have a substance use disorder; have a disabling mental disorder; have a physical, intellectual, or developmental disability that significantly impairs their daily life; or have a serious medical condition. States are not allowed to add categories.

Under the new regulations, CMS said having a medical condition alone isn’t sufficient to exempt someone from the work requirements. States must assess “the severity of an individual’s condition” to determine whether they can stay on Medicaid without working — a standard that makes it more difficult for enrollees to meet the criteria.

CMS officials did not list specific conditions that qualify for exemptions, but the agency did say homelessness can’t be a reason to claim that exemption because it is not a medical condition.

To implement the law, states “will have to undo work that they did,” said , deputy director of Princeton University’s State Health and Value Strategies program, which works with state governments on various health coverage issues.

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The Trump administration previously acknowledged that the work to upgrade state Medicaid eligibility systems to comply with the law is coming at a cost. In January, top CMS officials said government contractors, including Deloitte, Accenture, and Optum, and reduced rates through 2028 to help states adjust their systems.

The discounts “may be helpful” in some states, but they’re “not going to be helpful across the board” due to variations in state contracts, said , director of the State Health and Value Strategies program.

“Anytime you have to go back and say, ‘Oops, we need to reprogram this one thing,’ there’s a cost,” Howard said.

States were prepared to create lists of conditions and diseases to qualify people for work requirement exemptions, according to health care experts advising them. Mining data to verify someone’s illness was already a tall order for states because the computer systems that determine whether someone is eligible for Medicaid often do not communicate with the systems that track medical claims.

America’s health care payment systems rely on a set of standardized codes that correspond to specific diagnoses.

But there’s no “code that designates that someone is too sick to work — that’s a subjective assessment,” said Rachel Klein, deputy executive director of , a nonpartisan advocacy group for people with HIV. “This is a recipe for disaster.”

The new federal standards pose immediate issues for Nebraska, which launched its Medicaid work requirement on May 1, eight months before the federally mandated deadline. Nebraska handles decisions on medical frailty differently than the Trump administration does.

Nebraska officials had already released a nearly of medical conditions that qualify as exemptions, such as types of cancer, dementia, autism, epilepsy, HIV, and Parkinson’s disease. The state, which relies on government workers to check Medicaid eligibility, doesn’t require a person to prove how sick they are.

But under Trump’s rules, people will have to show their qualifying illness is impeding their ability to work.

Now, Nebraska is “going to have to go back and figure out how to assess whether all of these people are too sick to meet the requirement,” Klein said.

Medicaid enrollees are slated to start losing coverage this summer under Nebraska’s early rollout.

Sarah Maresh, a program director with , an advocacy organization for people with low incomes, said the state should refrain from terminating people’s coverage until next year because of the changes it will need to make. State residents are already confused and scared, she said, and the new rule “makes matters much worse.”

In response to several questions, Jeff Powell, a spokesperson for Nebraska’s Department of Health and Human Services, said the state is reviewing the new federal regulation to determine potential impacts.

The new federal standards will limit people’s ability to attest that they are medically frail starting in 2028 and will require documentation as proof, another change states weren’t expecting, Meuse said. had planned to allow applicants and enrollees to declare conditions themselves to get exemptions, according to KFF.

Striking the right balance of flexibility was an important part of deliberations when crafting these rules, CMS Administrator Mehmet Oz said on a June 1 call with reporters. “The mantra we kept coming back to was that we’re forgiving, but we’re not foolish,” he said.

Trump officials wrote in the regulation that Medicaid work requirements have “the potential to empower Medicaid beneficiaries” by allowing them to “escape isolation and dependency, build confidence, achieve self-sufficiency and prosperity, and improve health.”

Stephanie Burdick, a leader of the Protect Medicaid Utah coalition, disputed the premise.

“If they want to improve work opportunities or connection and decrease isolation and loneliness, they would be starting job programs and volunteer service programs,” Burdick said. “They wouldn’t just be forcing more administrative burden onto people and then saying that it’s good for them.”

An estimated will become uninsured by 2034 due to Medicaid work requirements, according to the nonpartisan Congressional Budget Office.

But with the new regulations, Howard said, there’s a risk of “that number being even higher.”

About a year ago at Erlanger Baroness, the largest hospital in Chattanooga, anesthesia staff noticed that a nurse was slurring his words and struggling to stay awake while on duty in the surgery center, according to a .

In the days that followed, the nurse failed a drug test and was fired, the order states. The nurse later admitted that for months he had pilfered and abused fentanyl left over after surgeries, sometimes daily, according to the order.

Under most circumstances, this would be a routine case of what is known as “drug diversion,” the unlawful taking of controlled substances from healthcare facilities — believed to be so widespread that it occurs at just about every U.S. hospital.

But the Erlanger case stands out because a high-tech watchdog was supposed to be on guard.

The hospital uses the newest line of defense against drug diversion: Sentri7, powered by artificial intelligence and designed to detect missing drugs faster than any human can. But for months at Erlanger, Sentri7 failed to raise alarms, overlooking missing drugs and other “inconsistencies” that “should have been flagged,” the nursing board’s order states.

The Erlanger case, which has not been previously reported, offers a rare glimpse at an apparent failure of AI drug diversion software used in hundreds of U.S. hospitals with little transparency or oversight. Healthcare facilities are not required to disclose their implementation of this kind of software or report malfunctions to anyone, so there is no full account of how widely these programs are used or how often they fail.

Erlanger Baroness, also referred to as Erlanger Medical Center, declined to comment on its use of Sentri7 or on the diverted drugs. André Rebelo, a spokesperson for the health division at Wolters Kluwer, the Dutch technology company behind Sentri7, declined to answer questions about what happened at Erlanger but said the company remained “confident in our software.”

Little Transparency

David Rastall, a Johns Hopkins Medicine neurologist and AI researcher, said that because AI technology is heavily proprietary and hospital officials often don’t understand how it works, this lack of transparency allows for errors to be buried rather than fixed. That means errors could be repeated at other hospitals, he said.

“The ideal for patients, caregivers, and hospital systems would be,” Rastall said, “when an AI is found to be making some type of error, that becomes very transparent and public.”

The Drug Enforcement Administration mandates that hospitals confidentially report lost or stolen drugs. Hospitals can also report stolen drugs to state health agencies, which license medical professionals and investigate wrongdoing.

But these reports are not required to include details about any AI software involved, according to interviews with three drug diversion prevention experts. In interviews, all said they had never seen an AI failure publicly documented like the apparent one at Erlanger.

“I’ve never myself seen these technologies be called out in that specific way,” Jacob Smith, a pharmacist in charge of drug security at Johns Hopkins Medicine, said of the apparent Sentri7 failure. “It doesn’t make sense to me how you could miss it.”

Smith and other experts said the Erlanger case also raises questions because the theft of leftover drugs is one of the most well-known methods of diversion. And fentanyl, a painkiller that can be 50 times as strong as heroin, is one of the most common targets.

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Terri Vidals, the founder of , questioned whether the Erlanger case was the result of user error instead of malfunction.

“This is the most basics of basics for this software,” Vidals said. “I find it interesting that they’re saying it wasn’t flagged by the software. I think there’s maybe more to that story.”

The apparent Sentri7 failure at Erlanger was revealed by the Tennessee Department of Health in a routine release of in December. Among those records was the Board of Nursing order, which summarizes a state investigation into nurse anesthetist John Stevenson, who settled the case against him by signing the document in November.

Stevenson declined to comment through his attorney. He has not been charged with any crime related to the Erlanger case. The nursing board put his license on probation while he went to drug counseling.

Bill Christian, a spokesperson for the Department of Health and Board of Nursing, declined to comment on the Erlanger case or Sentri7. In response to public records requests, the Department of Health and the Tennessee Health Facilities Commission each said it possessed no other documents about the apparent Sentri7 failure at Erlanger.

Erlanger spokesperson Charlie Milburn said earlier this year that the hospital had prepared a written statement about its use of Sentri7 in response to questions from �������ýҕ�l Health News.

That statement was never released.

“Our legal team is debating whether this is something we want to talk about at all,” Milburn said in a March email, before later declining to answer any questions.

Kristy Drollinger, a Wolters Kluwer executive who spoke generally about Sentri7 to �������ýҕ�l Health News in March, said the software is in high demand because so many hospitals have struggled to secure their drugs.

Sentri7 monitors about 60 “attributions of risk” that identify red flags for further investigation by hospital employees, Drollinger said.

“It’s pretty scary,” Drollinger said of widespread drug theft. “Every health system, every health facility, has had diversion at some point — and probably has it now.”

‘The Way of the Future’

Drug diversion is a widespread challenge in U.S. medical facilities. It can lead to patients not receiving medication or getting drugs that are contaminated with blood-borne diseases. It’s estimated as many as 15% of all healthcare workers divert drugs at least once, according to the nonprofit .

Diversion has been linked to at least — causing more than 200 infections, mostly of hepatitis C — since 1985, according to the Centers for Disease Control and Prevention.

To prevent this, hospitals attempt to track each pill or vial from the moment it is dispensed to the moment it is given to a patient, by comparing data from electronic medication cabinets and patients’ health records.

Hospital staff once performed this painstaking process manually, but in the past decade the task has become largely automated by anti-diversion software. After years of mergers and buyouts, two programs now dominate the industry: Wolters Kluwer’s Sentri7 and Bluesight’s ControlCheck. Both incorporate AI.

“It’s definitely the way of the future,” said Luke Overmire, owner of .

More than 1,500 hospitals use ControlCheck, according to Bluesight. An additional 700 use Sentri7 Clinical Surveillance programs, which can include its drug diversion software, according to Wolters Kluwer.

Neither company publishes the price of its software. Smith, the drug safety official from Johns Hopkins, said hospitals purchase these “expensive technologies” because a disastrous diversion case could result in a multimillion-dollar fine from the DEA.

“They don’t promise a return on investment,” Smith said. “They promise cost avoidance.”

In 2022, a funded by the National Institutes of Health found that Sentri7, then known as Flowlytics, could uncover drug diversion faster than existing methods. The study’s primary author worked for Invistics, the company that previously owned Sentri7.

According to that study, researchers tested the software by having it comb through medication data spanning two years and 10 hospitals in search of 22 nurses who were already known to have diverted drugs.

The program not only found them all, the study states, but found them faster than humans by as little as a week and as much as a year and a half.

At Erlanger, the humans spotted the signs of trouble first.

According to the Board of Nursing order, co-workers reported that Stevenson appeared impaired “while on duty in the surgery center” on or around June 30, 2025.

Stevenson “had slurred speech, appeared extremely tired, was seen standing with his eyes closed and swaying, exhibited head nodding while standing upright and appeared to have difficulty keeping his eyes open,” according to the order.

When questioned by state investigators, Stevenson admitted that he began diverting “unused fentanyl that would otherwise have been wasted after surgical procedures” in March 2025, according to the order. Stevenson said he used the fentanyl waste once or twice a week at first, then “increasing to daily use” by June of that year, the order states.

Erlanger audited Stevenson’s dispensing record over those four months. It found approximately five instances when Sentri7 didn’t flag missing drugs, according to the order.

It adds that the hospital found “additional inconsistencies between drug dispensing and waste documentation that should have been flagged by the automated monitoring system.”

One possible explanation is provided by the Board of Nursing, which said in the order that Sentri7 was in its “initial learning phase” at Erlanger, though the board provided no details.

In an interview, without discussing Erlanger specifically, Drollinger said Sentri7 has no “learning phase,” because it is trained on nine to 12 months of historical data when implemented at a new hospital.

Smith, of Johns Hopkins, had another theory.

In an interview, Smith said his experience with AI drug diversion software had led him to believe that it is effective at monitoring emergency rooms and intensive care units but less so in operating rooms, where drugs are dispensed and charted differently.

These areas can be harder for AI to track, Smith said, and therefore require humans to keep a closer watch.

“We’ve got people whose entire job is to work with this software,” Smith said. “The software is a piece of it, but if you rely on the software to give you all your signals, you’ll miss stuff. It’s just not 100%.”

PORT HURON, Mich. — State health officials urged parents in several counties to vaccinate babies against measles ahead of schedule this spring as cases multiplied in Michigan. The outbreaks of the highly contagious virus — which can lead to brain swelling, deafness, and death — came as parents are opting school-age kids out of vaccinations at a record-high rate.

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.”

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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 �������ýҕ�l 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.”

An Albanian man’s pain grew so unbearable, he said, he pulled out his own tooth as he languished for months in a New Mexico immigration detention center. A Honduran mother of two said she was hospitalized for a heart problem after she was denied blood pressure medications while held in Florida. A said his leg grew purple and swollen from flesh-eating bacteria when staffers at a Vermont facility did not bring him to a scheduled doctor appointment.

Hundreds of detainees across at least 33 states allege in federal suits that immigration detention facilities are failing to provide adequate medical care, an investigation by �������ýҕ�l Health News and The Associated Press found. Detainees say they didn’t get medications on time — or at all — for conditions including high blood pressure, diabetes, depression, epilepsy, Parkinson’s, and HIV. Requests for help went unanswered for weeks. Blood sugars rose. Infections festered. Cancers remained untreated. Detainees collapsed and had seizures.

U.S. jails and immigration detention centers have to meet the medical needs of the people in their charge. But the system is sagging under an influx of detentions since President Donald Trump returned to office: More than 75,000 immigrants were being detained by U.S. Immigration and Customs Enforcement , up from around 40,000 a year earlier.

�������ýҕ�l Health News and AP analyzed thousands of court cases filed since Trump’s second inauguration that use a legal route known as habeas corpus to argue people are being held illegally by ICE. The records offer a rare window into how those detained say, often under penalty of perjury, ICE is handling their medical needs. Reporters also interviewed more than 50 detainees, family members, and lawyers.

The investigation revealed that medical neglect is alleged across the sprawling detention system, including in offices not designed to house people, county jails, and quickly staged sites with nicknames such as “Alligator Alcatraz.”

ICE custody is deadlier than it has been in two decades, researchers wrote in April. The Department of Homeland Security reported 51 people had died in detention since the start of Trump’s second administration — with suicides .

�������ýҕ�l Health News and AP asked DHS to respond to the findings six days before publication, but it did not provide comment. The department’s acting chief medical officer, Sean Conley, has “it is both policy and longstanding practice for aliens to receive timely and appropriate medical care from the moment they enter ICE custody” and that the agency recruits healthcare professionals to maintain high standards. “This is better, more responsive healthcare than many aliens have ever received in their entire lives,” he has said.

Individual facilities and private prison companies contracting with DHS that responded to requests for comment said they follow ICE standards and detainees receive medical care when it is required. Some said they were unfamiliar with the allegations outlined in court documents; others blamed some detainees for lapses in their medical care.

“I have never seen such disregard or medical neglect like this anywhere,” Vardan Gukasian, a political dissident and former paramedic who spent years behind bars in Armenia, wrote in in March to contest his detention in Henderson, Nevada, as it stretched to 13 months despite health problems.

Madeleine Skains, a spokesperson for the city of Henderson, said medical care is always available at the facility and that the court had not ordered changes to his care.

Last June, as Gukasian experienced the symptoms of uncontrolled high blood pressure — dizziness, a nosebleed, and a headache — his cellmate banged on their door for help.

“When it did not arrive, the rest of the block banged on their doors,” he wrote. Gukasian was hospitalized that day.

‘Brazen Indifference to Really Obvious Problems’

The administration’s mass deportation effort has swept up during routine immigration check-ins, at traffic stops, at their homes, and in hospitals.

About have no criminal conviction. Their immigration proceedings are civil, not criminal.

“I couldn’t understand why they treated me so harshly,” said a father of six in Georgia. He said he was injured while shackled in custody when the vehicle transporting him to an Atlanta facility jolted, throwing him out of his seat and into a metal armrest. His wound became infected with E. coli, he said, because he had to sleep on a dirty concrete floor amid leaking toilets.

Like other detainees interviewed, he spoke on the condition of anonymity; they said they fear for their safety, for the safety of their families, or that speaking out would jeopardize their immigration cases. The AP and �������ýҕ�l Health News are not naming anyone identified in court documents without their consent.

Staffers at Stewart Detention Center in rural Lumpkin, Georgia, didn’t adequately respond to that man’s request for medical help, , until he passed out and was taken to a hospital about an hour away. There, he said, a doctor told him he’d narrowly escaped amputation of his left leg. Medical staff found no records of a case matching this description, according to Brian Todd, a spokesperson for CoreCivic, which runs the facility.

The 48-year-old, who moved to the U.S. from Guatemala more than two decades ago, was released in October and is now a legal permanent resident. But he is unsure if he’ll be able to return to his job in construction because, he said, he can no longer lift heavy things due to his injury.

Some detainees or their lawyers said even basic care was denied: gauze to protect an open foot wound, prenatal care for a high-risk pregnancy, a pillow to ease the pain of sleeping with advanced stomach cancer, sanitary pads for postpartum bleeding.

“I would like to believe the government has the best interest of those it holds in detention for whatever period of time,” Judge Benita Pearson, a federal judge in Ohio, said during a hearing in October concerning a 70-year-old who alleged the government lost her glasses during her arrest. “If one is unable to see due to the loss of glasses when detained, that should be fixed.”

, who worked for ICE and now serves as a special adviser to the American Bar Association, said case law requires the government to treat people in immigration detention with the same care it affords those in traditional jails awaiting trial. But administrators are granted discretion and medical care standards vary.

Detainees are frequently moved across the country, often without warning, interrupting treatment. A woman from El Salvador said she missed a week of HIV medication when she was transferred from Colorado to a county jail in Wyoming.

A Russian man wrote that, while detained in Texas, he saw a gastroenterologist about his painful gallstones and scheduled an appointment with a surgeon. “Unfortunately, I never got to see him, due to my being moved around various detention centers.”

Advocates say that even obvious disabilities, like legal blindness, are ignored.

A detainee who lost one eye and had severe glaucoma in the other required twice-daily drops to maintain what vision remained. But, he said, some days the drops never came.

“Now I can only see a little bit straight in front. It now often looks like I’m seeing through gauze,” the man wrote in a court declaration. “This makes me very afraid that one of these times I am going to open my eyes and not be able to see anything at all.”

He wrote that he was scared he wouldn’t be able to see his infant son grow up.

“It’s just sort of brazen indifference to really obvious problems, things you would have thought absurd a decade ago — like the fact that you can’t see,” the man’s attorney, Brian Hoffman, said. “Before, you could attempt to work with folks on the government side and maybe shame them into doing the right thing. Now, it’s sort of like anything you want done you have to go to court and sue over.”

Even court orders aren’t always enough. One California judge ordered the government to take a man showing signs of prostate cancer to a specialist for diagnosis and treatment. Records show they did not take him.

Lawyers representing ICE told the judge that officials missed the appointment because of an “internal scheduling error.” CoreCivic, which runs that facility, said it was unable to comment on active litigation.

A Surge in Cases

When immigrants file habeas corpus petitions, they exercise a right to challenge unlawful imprisonment that dates to .

More than 40,000 such petitions have been filed during Trump’s second term, fueled by decisions last year to deny bond to many people held on immigration charges. Judges are split on whether that’s legal; the question appears headed to the Supreme Court.

Many habeas claims , but judges typically cite reasons unrelated to the medical neglect described in the petitions, such as detainees’ being held too long before being deported.

The more than 300 medical neglect claims found in this investigation represent a fraction of the problem. The details of habeas corpus cases are often hidden due to a federal rule barring the public from viewing such documents online. �������ýҕ�l Health News and AP obtained some documents from courthouses and received records on 4,400 cases from , a project of the nonprofit Immigration Justice Transparency Initiative. But tens of thousands more remain largely inaccessible.

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Some judges have written that the habeas process is not how to raise allegations of medical neglect and have declined to release detainees over those claims. Not every detainee who believes they experienced medical neglect files a habeas petition or cites their medical issues if they do.

Jose-Antonio Segismundo’s petition made no mention of being unable to see an oncologist for the cancer in his abdomen while detained for more than seven months at the Florida detention facility known as Alligator Alcatraz and Folkston D Ray ICE Processing Center in Georgia. Medical records in his court filings show he was arrested about five weeks before his scheduled appointment with a cancer specialist.

His wife, Maria Jose Gonzalez, said he didn’t receive any treatment even though she sent his medical records and explained his condition to officials at Folkston. When his stomach pain erupted, often suddenly and intensely, she said, they gave him Tylenol.

Geo Group, which runs Folkston, follows ICE standards and provides healthcare and access to off-site medical specialists when needed, spokesperson Christopher Ferreira said.

This spring, Segismundo, 48, was deported to Mexico, a country he left nearly 30 years ago, Gonzalez said. Now, she said, he will have to restart his search for care in the Oaxacan village where he grew up.

Watching Loved Ones Deteriorate

Detainees receiving inadequate healthcare have little recourse. The Department of Homeland Security last year gutted the Office of the Immigration Detention Ombudsman. In early May, it shut the office entirely, arguing that Congress didn’t fund it.

Previously, ombudsman staffers could help facilitate medical care or look into complaints of neglect, according to Matt Boles, an immigration attorney in Georgia. Now, he said, there’s no one to call.

Meanwhile, detainees’ families said they feel helpless, making desperate calls to facilities, the government, and their legislators while watching their loved ones deteriorate.

Riya Khan saw her mother get sicker at the California City Detention Facility, which is owned by CoreCivic. When she visited a week after her mother arrived at the facility in the Mojave Desert, Riya said, the 64-year-old woman stumbled into her seat. She was shaking and her breathing was labored.

Masuma Khan came to the U.S. from Bangladesh in 1997. She has no criminal history, her records say, and was detained in October when she showed up for her regular ICE check-in.

For the month she was detained, according to her daughter, she only intermittently received her medications for conditions including high blood pressure, hypothyroidism, and prediabetes. CoreCivic treats chronic conditions in line with applicable medical standards, Todd said.

“Nothing matters more to CoreCivic than the health, safety and well-being of the people in our care,” Todd said.

Khan said she got her asthma medication for the first time two days before she was released and that her eye drops for glaucoma never arrived. Staffers told Khan she needed to buy some of her medications from the commissary but it didn’t stock them, her daughter said.

Before ICE detained Masuma Khan, she made friends with everyone, her daughter said. She had worked for years at Lucky Boy, an iconic Pasadena fast-food restaurant, and in her free time fed birds and left out fruit for bees that visited her apartment’s balcony.

Now she’s too scared to go outside. She still must regularly check in with ICE, and she’s terrified each time.

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A Stroke on a Video Call

Previously, detainees with serious medical needs would likely have been released on humanitarian parole, in part to avoid the cost of their care, Vermont attorney Andrew Pelcher said.

In fiscal year 2023 — before the detained population soared — ICE spent more than $390 million on healthcare for detained noncitizens, according to its to Congress. In May, Todd Lyons, then acting director of ICE, said at a conference that the agency had already spent “almost half a billion dollars” on detainee healthcare this year.

Now, under “mandatory detention,” people are staying locked up with serious — and expensive — conditions.

A Romanian citizen underwent several heart surgeries, including an emergency triple bypass in April 2025, before he was arrested in July. As part of his recovery, the 52-year-old was required to take 16 daily medications. While at an ICE field office in Baltimore, his court filings allege, he went two days without any medication before officials moved him to a facility in New Jersey.

He was hospitalized three times while detained, complaining of chest pains — in part, medical records and court documents say, because despite “countless requests,” the detention center did not provide all his medications. Hospital discharge papers cited by his lawyer show he received only eight of the 16 medications after his second release from the hospital.

“Can you please talk to the ICE facility to make sure they give him his medications?” his treatment providers wrote in medical records included in his court filings. “He was admitted last week for chest pain and today he was readmitted again for chest pain secondary to non compliance for medications.”

Several weeks later in August, he had a stroke while on a video call with his daughter, according to court filings. “He was struggling to breathe, and was pointing at his chest where he was again experiencing pain, and suddenly stopped speaking.” His daughter screamed for help through the video monitor, according to his petition. “Eventually an officer came in to assist him and cut the feed.”

The man lost his ability to speak for four days, the document says. He was returned to detention, where he remained until a federal judge ordered his release in November.

Impossible Choices

Cassandra Amador waits for the phone to ring every morning, desperate to ask her husband the question that’s woken her up every night for months: “Did you get your medicine?”

Her husband, Pedro Javier Amador Gutierrez, 36, has high blood pressure and depends on the state-run facility in Florida nicknamed “Deportation Depot” to administer the prescriptions that have kept him alive for years. Many mornings, he tells his wife he did not get them.

When she talks to him, she said, he sounds weaker and more scared every day, not like the upbeat man who would take her kids out for ice cream.

“You can hear in his voice how he feels,” she said.

Now, she said, he’s considering returning to Cuba, which he fled because of political persecution, out of fear that he will die in detention without his medicines. Amador and her children would go with him, she said, even though she was born in New Jersey, has never been to Cuba, and doesn’t speak much Spanish.

But he’s already collapsed twice at the Baker Correctional Institution in Sanderson, Florida, his wife said. She’s terrified that the next time, he won’t get up.

Associated Press journalists Garance Burke, Valerie Gonzalez, and Tim Sullivan as well as �������ýҕ�l Health News correspondent Kate Wells contributed to this report.

This report is a collaboration between The Associated Press and �������ýҕ�l Health News.

Jill Woodrow reached a tipping point as a caregiver when her mom began struggling to communicate information about her latest doctor appointments.

Woodrow’s mother, a uterine cancer survivor, was seeing specialists to get to the bottom of several new, concerning symptoms. “When she would try to tell us about what happened or what the conversation was, she couldn’t remember,” Woodrow said.

So Woodrow, a school therapist, started taking her mom to medical appointments. Woodrow was able to ask doctors questions and explain their answers. But it was difficult to juggle her mom’s medical care while working, raising three daughters, and coordinating with her husband’s work schedule.

“I was having to leave work early, take sick time, personal time,” she said. “All of a sudden, my best friend said to me, ‘Jill, have you ever thought about taking FMLA?’ And honestly, I never did.”

FMLA refers to leave protected by the , a federal law that guarantees employees up to 12 weeks of unpaid leave per year for their own serious health condition or to care for a parent, spouse, or child with a serious medical condition.

During eight weeks away from work, Woodrow helped with her mom’s medical care, cooked meals, and helped with housework. Her mom was later diagnosed with breast cancer and died in 2023.

“Taking FMLA really helped me focus on my family and my mom, and it was honestly the best thing that I could have ever done,” she said. “I have no regrets.”

But navigating the intricacies — logistical and emotional — of this federal policy can be challenging. Here’s what to know.

1. Read the fine print.

When FMLA was passed in 1993, it was groundbreaking, said Jocelyn Frye, president of the National Partnership for Women & Families. Before then, there were no federal protections for employees who needed to take time off for medical reasons.

Roughly 60% of workers in the U.S. , according to the Department of Labor. To be eligible, people must have worked for a company with 50 or more employees for at least a year. Within that time, employees must have worked at least 1,250 hours, which translates to working full-time for about seven months.

Keep in mind, FMLA applies only to caregiving if your child, spouse, or parent is facing a “serious medical condition,” like inpatient care or continuing treatment. If you need to take time from work to care for someone with a short-term illness or routine medical care, you will likely need to use sick leave or some other kind of paid time off. And FMLA generally does not apply to caring for in-laws, siblings, or close friends.

2. Getting paid on FMLA is possible — but far from guaranteed.

The federal law requires employers only to provide unpaid leave, which limits how many people consider FMLA. According to the Department of Labor, two-thirds of eligible employees said they wouldn’t take FMLA because they to go without pay.

However, some people can still get a paycheck while taking FMLA. now require employers to provide paid family leave programs. Alternatively, you can apply another form of paid time off, like paid vacation or sick leave, to the time you take away from work. This is called concurrent leave. Some employers require employees to apply any available leave they have during the time they’re taking FMLA, which in practice ensures that employees do not take more than the protected 12 weeks of leave within a year.

So why use FMLA instead of just taking PTO or stringing together sick days? Under the federal requirements, FMLA protects an employee’s job and healthcare, which is not the case for other kinds of leave.

3. Communicating clearly about leave with your employer is key.

In a 2018 survey conducted by the Department of Labor, one-third of FMLA-eligible employees shared that they avoided taking leave because they feared losing their job or being treated differently at work, or because they considered their work too important.

Woodrow had to navigate her own hesitation. “I have a lot of students on my caseload, and I felt so guilty about leaving them,” she said.

But FMLA advocate Frye said employees should remember that FMLA exists to help them “take the time that they need to support their families — and not feel like they have to pretend like that’s not a natural part of life. Because it is.”

Frye suggests employees be proactive when approaching their manager about planning a leave. “I’d say, ‘I want to work with you to make this work for everybody,’” she said. In that conversation, employees could also offer to support their manager or other co-workers when those colleagues face a caregiving need in the future. Doing so could help shift a workplace culture to be more accepting of caregiving realities and FMLA leave over time, Frye added.

People and Policy

The has had no major updates since it was passed in 1993, although there have been modifications to the leave options available to military service members and their families. A from the Pew Research Center found that 69% of Americans support the federal government requiring employers to provide paid family leave for caregiving for an aging family member.

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 �������ýҕ�l Health News.

The Trump administration’s deep cuts to federal health agencies have become a political liability after a deadly outbreak of hantavirus aboard a cruise ship and the spread of an even more fearsome disease, Ebola, in Africa.

At least that’s the way many Democrats see it.

They have seized on the situation to charge that the U.S. is ill prepared to respond to outbreaks — let alone a pandemic — after President Donald Trump and funding for public health infrastructure and pandemic preparedness. Infectious disease specialists have called on the White House to reverse cuts and rejoin the World Health Organization.

The White House, meanwhile, is on the defensive, trying to reassure a pandemic-weary public that the federal government can still mount effective responses to infectious disease outbreaks.

The FDA and the Centers for Disease Control and Prevention as part of an effort led by billionaire businessman Elon Musk and the Department of Government Efficiency, or DOGE, that also resulted in the cancellation of billions of dollars in federal contracts and grants.

“These outbreaks are unfolding at a time when the U.S. public health infrastructure is under significant strain,” said , an emergency medicine physician and former Baltimore health commissioner. “The CDC currently lacks a director, the FDA lacks a director, there is no surgeon general, and many leaders with outbreak response management experience have left the federal government.”

The U.S. government has and is monitoring potential exposures to hantavirus after an outbreak on a cruise ship. It is also implementing new restrictions for foreign travelers amid an Ebola outbreak in Uganda and the Democratic Republic of Congo that has grown to more than . While neither situation is seen as likely to become a global pandemic, Democrats and infectious disease leaders have seized on the outbreaks to criticize the effects of the DOGE cuts and other administration public health policies.

The hantavirus cluster occurred on the , an expedition ship that left Argentina on April 1 for a monthlong sojourn with almost 150 people aboard. The earliest cases, including two deaths, were on May 2. infected passengers have died. Hantavirus is typically spread to people from rodents, but this version, known as the , can be passed person to person.

The Ebola outbreak has captured public attention, though no cases have been confirmed in the U.S. The virus — a rare strain called Bundibugyo, against which there are no proven vaccines or treatments — spread undetected for weeks, prompting WHO Director-General Tedros Adhanom Ghebreyesus to say he’s concerned about the “” of the outbreak. , including a doctor exposed to the virus, were evacuated to Germany by the U.S. State Department.

Democrats Criticize Cuts

Some Democrats are pressing the administration to rejoin the WHO and restore funding to federal agencies. A lawsuit is ongoing over the dismantling of the U.S. Agency for International Development, the primary agency for providing foreign assistance. Core USAID activities included efforts to build local outbreak detection and prevention capacity in vulnerable regions, including in the Democratic Republic of Congo.

Sen. Chris Murphy (D-Conn.) noted the emerging threats associated with the rising Ebola case count, posting : “We know how to stop outbreaks like this. But Trump chose not to stop it. He destroyed our global health team, deliberately exposing us.”

Sen. Dick Durbin (D-Ill.) said May 21 on X that the Trump administration’s “sweeping and self destructive foreign aid cuts” left the U.S. and Congo struggling to contain the Ebola outbreak.

“An utterly predictable result from the chaos of DOGE,” he said.

And, in the wake of the hantavirus outbreak, Senate Minority Leader Chuck Schumer of New York to rehire fired outbreak-response workers, restore funding at the CDC and Department of Health and Human Services, and rejoin the WHO’s global outbreak warning network.

“The Trump administration’s gutting of America’s public health preparedness has made the recent hantavirus outbreak even more alarming,” Schumer said May 12 on the Senate floor.

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Federal agencies pushed back on criticisms about the early response to hantavirus, with officials insisting on social media, at press events, and in TV appearances that their work was appropriate and effective.

The federal government is conducting a coordinated, interagency response, HHS spokesperson Emily Hilliard said. Claims that federal cuts have imperiled the response or future pandemic preparedness are “completely inaccurate,” she said.

The CDC and State Department say they are ensuring rapid viral testing is available for the Ebola outbreak and are actively deploying resources through State Department country offices in Congo and Uganda.

“I want to assure you that CDC and our federal partners are working around the clock to ensure our information is accurate and that action plans are being implemented immediately,” Satish Pillai, who is leading the CDC’s Ebola response, said in a .

Trouble Spots

The criticism isn’t coming just from Democrats. Public health officials also say that Trump administration actions have hampered the response to both outbreaks and that the cuts to USAID helped set the stage for the spread of Ebola.

The International Rescue Committee, which helps people affected by humanitarian crises, has said funding cuts by the administration in March 2025 prompted a reduction in disease surveillance systems in the epicenter of the Ebola outbreak.

The U.S. had funded the surveillance, as well as outbreak preparedness efforts to prevent infections, with hand-washing stations, showers, latrines, and waste management. The committee said it had to cut programming.

“Years of underinvestment and recent funding cuts have left many health facilities without adequate protective equipment, surveillance capacity, or frontline support needed to respond quickly and safely,” Heather Reoch Kerr, the committee’s country director in Congo, .

The federal government’s overall response to the outbreak, including the decision not to fly Americans exposed to Ebola to the U.S. for treatment, stands in sharp contrast with previous responses to Ebola, some epidemiologists and former health officials say. It also could discourage other medical professionals from traveling to the region to help.

During the 2014-15 outbreak in West Africa, the federal government eventually deployed Army and Navy technicians and other service members to process blood tests, build medical labs, and train local healthcare workers.

USAID emergency response teams also played a key role in the on-the-ground response to that Ebola outbreak, from building treatment rooms to handling burial of the dead, Ron Klain, during the Obama administration, said on NPR.

Michael Osterholm, the director of the Center for Infectious Disease Research and Policy at the University of Minnesota, said USAID was “a key support for programs.”

“The infrastructure in Africa has been cut with the cuts at USAID,” he said. “It’s making it more difficult.”

The United States’ ability to respond to a real pandemic is “a mess” because of the cuts and the administration’s stance on mRNA vaccines, the technology behind covid shots, Osterholm said. The White House last year canceled nearly for mRNA vaccine development despite a lack of evidence of any health risks.

The rapid technology would enable faster worldwide vaccine production in the case of a pandemic compared with more traditional vaccine development, Osterholm said.

have also over the U.S. response to hantavirus. For example, the CDC on May 8 issued a about the cluster of hantavirus cases on the cruise ship in the Atlantic, but the alert came after some passengers had already . in late April on commercial flights.

And the agency’s on the outbreak aboard the took place May 9. The phone briefing with reporters came five days after the WHO had alerted the public about the situation.

“The first press conference was after this was international news,” said Wen, the former Baltimore health official.

The CDC has defended its response to hantavirus. It has required U.S. passengers of the cruise ship to remain in a quarantine facility and has assured the public that the overall health risk here at home is low.

“The country is prepared. The CDC is focused on it,” Mehmet Oz, a physician and head of the Centers for Medicare & Medicaid Services, on May 11.

Within 24 hours of injecting the first dose of a weight loss medication she received following a visit with a telehealth doctor, Karleigh McClain was admitted to the hospital, she said.

The 31-year-old compliance consultant from Hendersonville, Tennessee, said she couldn’t stop vomiting.

“Sunday morning, it all hits,” McClain recalled, as she described what happened that weekend in January. “I can’t keep anything down.”

McClain said she thought the dosage the telehealth company had prescribed seemed too high. She tried to contact her doctor, but when she didn’t get an immediate response, she said she called the company and a “care team” representative confirmed the instructions — which said to inject 2.21 milligrams of the semaglutide medication once a week — were correct.

It turned out, however, that was nearly nine times the amount patients are typically told to take for their first dose.

Nearly a month after she was diagnosed with an overdose, McClain said she was “still dealing with the residual side effects,” including an elevated heart rate and vision problems she felt were tied to the medication.

Most patients who have taken a GLP-1 received their prescription through a primary care doctor or a specialist, shows. But as the uptake of telehealth has grown substantially since the start of the covid pandemic, McClain is one of millions of Americans who have used online companies to meet a variety of their medical needs.

Many of the companies have started offering GLP-1 medications for weight loss as demand for these drugs has exploded. But certain medication errors tied to GLP-1s have exploded too, according to a �������ýҕ�l Health News review of Food and Drug Administration data, and physicians and telemedicine researchers worry that adverse experiences tied to telehealth companies are becoming more common.

Bad outcomes aren’t unique to telehealth providers or to the compounded weight loss drugs many of them offer. In fact, product liability lawsuits alleging patient injuries have been filed overwhelmingly against pharmaceutical giants Eli Lilly and Novo Nordisk, which manufacture name-brand weight loss drugs, court data shows. The drugmakers have defended their products.

However, some critics are also concerned that getting a weight loss prescription online is usually much easier than getting one through an in-person appointment. Not only do many telehealth companies write quick prescriptions for GLP-1s, but they often sell the medications, too, allowing patients to bypass in-person pharmacy visits. This one-stop shopping isn’t necessarily a good thing, according to critics who say some telehealth providers are writing prescriptions for people who should not be taking GLP-1s and then providing little or no follow-up care.

“It gives a black eye to telemedicine,” said Elizabeth Krupinski, an experimental psychologist at Emory University who has conducted research on the effectiveness of telehealth.

Telemedicine stands to benefit “so many people,” Krupinski said, particularly when the technology is integrated within a larger healthcare system. That way, patients benefit from the convenience of telehealth while maintaining a connection with their in-person providers.

But some telehealth companies are marketing GLP-1s as an easy way to lose weight — sometimes with the help of paid celebrity endorsements — without emphasizing the importance of healthy eating and exercise, she said.

They may be following the letter of the law, Krupinski said. But writing prescriptions while skimping on care “is not in the Hippocratic oath.”

The Perfect Storm

Starting around 2020, many states loosened restrictions on telehealth, which allowed online companies to proliferate. This helped accommodate patients who could not, or chose not to, be seen in person at the height of covid transmission.

Expanded telehealth access was also intended to lower barriers in rural communities, as well as mitigate doctor and nurse shortages. In many places, telehealth doctors and nurses are legally allowed to treat patients across state lines. But the way telemedicine is practiced , and state laws largely dictate rules that telehealth providers must follow.

Some companies, such as Mochi Health, require patients to meet virtually with a provider, such as a doctor, nurse practitioner, or physician assistant, before they can get a GLP-1 prescription.

But others, including Ro, sometimes require nothing more of patients than an “asynchronous” evaluation, which does not include a live conversation with a healthcare provider. During this type of evaluation, customers are typically asked to fill out an intake form and answer a medical history questionnaire before they are evaluated for a prescription. Ro requires a conversation in real time when required by state law, or when requested by a patient or clinician, said Nicholas Samonas, a spokesperson for the company.

“Every patient is counseled by their provider on the potential benefits and risks of treatment based on their individual medical history,” Samonas said. Ro’s clinicians can order lab work when necessary and, when appropriate, may recommend patients seek in-person care, he said.

But some medical experts are concerned that virtual care may be insufficient for prescribing weight loss drugs.

Patients with a history of pancreatitis, for example, should be counseled about potential complications, medical studies show. The same goes for people with a condition called gastroparesis, which affects stomach nerves and muscles, and those susceptible to medullary thyroid cancer.

Some patients may also benefit from blood work or muscle mass screening before starting a GLP-1.

But not all telehealth companies are adequately evaluating patients before writing prescriptions, said Marc-Andre Cornier, an endocrinologist at the Medical University of South Carolina and the immediate past president of The Obesity Society.

When it comes to parsing the good from the bad, “whose job is it to police that?” he asked. The problem, he said, is there aren’t criteria written by a government agency or a medical society to determine which providers are treating patients appropriately and which aren’t.

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While the first GLP-1 was approved by the FDA more than 20 years ago, to treat Type 2 diabetes, the use of these drugs took off in 2021 when Novo Nordisk received approval for a semaglutide drug to treat obesity, with the brand name Wegovy. In a 2025 KFF poll, said they had taken a GLP-1.

In a in The New England Journal of Medicine, physician Amanda Banks noted that the proportion of GLP-1 prescriptions written for people who were not diabetic, obese, or overweight increased from 4.5% in 2018 to 17% in 2023.

In the paper, Banks called it “troubling” how easy it is to obtain a prescription for weight loss drugs and worried they might exacerbate existing eating disorders or cause new cases, including of anorexia.

Cornier, who has received compensation from Novo Nordisk for serving as a consultant, echoed some of Banks’ concerns. “It’s not just filling out a form online and then having some random healthcare provider sign off on it,” he said. “There are concerns with some of these online programs that there’s not a proper evaluation, there’s not a baseline, and there’s not proper supervision.”

The American Telemedicine Association, which advocates for the expansion of “digitally enabled care,” has not addressed how telehealth providers prescribe GLP-1s, spokesperson Gina Cella said.

“This is a bit out of our scope,” Cella said, when asked if the association had addressed the topic of telehealth providers and GLP-1 prescriptions.

The lack of clarity makes choosing a company potentially confusing for patients, and the medical profession is partly to blame, said Jamy Ard, an obesity doctor and researcher at Wake Forest University School of Medicine in Winston-Salem, North Carolina.

Doctors have historically done a bad job counseling patients about weight loss, and many people aren’t comfortable talking to their primary care doctor about it, Ard said. Patients think, “Why would I go to my doctor and have them say, ‘Eat less and move more,’ when I have heard that a million times and I don’t want to have that lecture again?” Ard said.

This problem, combined with past shortages of name-brand versions of GLP-1s, such as Ozempic, Mounjaro, and Trulicity, has created a “perfect storm” for telehealth companies to flourish, said Ard, who has received support from pharmaceutical and telehealth companies.

While some telehealth companies prescribe only name-brand weight loss drugs, many also offer cheaper, compounded versions. They act as intermediaries between customers and mail-order compounding pharmacies, which create GLP-1s by mixing active ingredients, such as semaglutide, with additives. The ingredients for compounded drugs are commonly sourced from overseas suppliers, and the formulations are not reviewed by the FDA for safety.

The environment is “very much uncontrolled and poorly, if at all, regulated,” Ard said. “There is just no standard of care.”

Emily Hilliard, a spokesperson for the Department of Health and Human Services, told �������ýҕ�l Health News that compounded drugs “should only be used in patients whose medical needs cannot be met by an FDA-approved drug.”

Hilliard said the agency urges “consumers to be vigilant and know the source of their medicine.”

Understanding the Risks

While weight loss drugs have helped millions of people lose weight, they’re not without risk, the data shows.

A �������ýҕ�l Health News data analysis of the FDA’s Adverse Event Monitoring System found that medication errors made by providers or patients with popular weight loss drugs exploded from just over 2,000 reports in 2020 to over 25,000 in 2025. Those self-reported events involved semaglutide, tirzepatide, dulaglutide, and liraglutide, the generic names for leading GLP-1s.

Among frequent issues cited in the adverse event reports were administration of an extra or incorrect dose, issues with communication about a product, and prescribing errors.

Since 2019, the National Poison Data System has fielded a related to overdoses or side effects from injectable weight loss drugs. The data does not distinguish between overdoses tied to a telehealth prescription and those stemming from an in-person medical appointment, but it is a reflection of how prevalent these drugs have become.

Yet data on potential medication errors and adverse reactions to GLP-1 medications is incomplete, because many issues are never reported to federal officials.

For example, in a , the FDA accused drugmaker Novo Nordisk, the maker of Wegovy and Ozempic, of failing to report some adverse events to the federal government, including suicidal ideation and death.

Nobody knows how often adverse events occur, said Kristen Nixon, a Johns Hopkins University researcher who has studied posts about weight loss drugs on Reddit, a popular online forum.

Her team analyzed hundreds of Reddit posts from 2020 through last August and identified frequent mentions of drug reactions and user errors, such as patients’ not knowing how to correctly dose and inject the medication.

But another finding also stood out to her.

“Wow, there are a lot of people talking about telehealth,” Nixon recalled thinking. Reddit commenters said they got GLP-1 prescriptions from scores of telehealth platforms, Nixon found. Commenters also mentioned several dozen compounding pharmacies — often in the same posts about telehealth.

Pharmacies are typically required to counsel patients on medications they receive. But Nixon’s research found that telehealth companies often mail the medications directly, meaning patients do not need to go to a pharmacy.

“Anecdotally, it seems like the telehealth companies are really facilitating access to compounded medications,” Nixon said.

Leslie Gammon, 54, an office manager from Wendell, North Carolina, said she turned to a telehealth company called Amble Health for a weight loss drug prescription. She was given a GLP-1 after filling out an online form, she said.

Like McClain, when she received her mail-order compounded medication in late October, she thought the dosage that accompanied it seemed too high. She’d received a box of semaglutide earlier in the month with a much lower dose. But the refill she received was a stronger formulation, and the instructions told Gammon to inject three times the volume she had been taking in previous weeks.

Even though she injected slightly less than that recommended amount before bed on a Sunday evening, she woke up in the middle of the night “throwing up every 20 to 25 minutes,” she said. And it didn’t stop until Tuesday. She was eventually admitted to a hospital in Raleigh and now owes the hospital over $9,000, a medical bill shows.

Amble Health did not respond to questions for this article.

The delivery system for injectable versions of weight loss drugs is more complicated than for a pill. In its National Poison Data System alert, America’s Poison Centers noted that some people reported “accidentally taking 10-times the recommended dose due to confusing measurement units while using a syringe.”

And people who are eager to lose extra weight — before a wedding or a vacation, for example — may choose to self-administer a higher-than-recommended dose, said Arthur Caplan, a bioethics professor at New York University’s Grossman School of Medicine.

Some telehealth companies aren’t doing enough, he said, to make sure patients understand the risks or the complex delivery system associated with the injectable drugs.

“The consent is not adequate,” Caplan said. “There’s no probing to see if you understood anything.”

Cella, with the American Telemedicine Association, said the group has not addressed the difficulty of educating patients about the risks of injecting weight loss drugs. But she pointed to the association’s “,” which states that telehealth business models “must put the patient first.”

Proceed With Caution

Pharmaceutical companies must list potentially harmful side effects when they advertise the name-brand versions of their FDA-approved medications. Potential include nausea, vomiting, changes in vision, low blood sugar, and, in rare cases, thyroid cancer. Meanwhile, telehealth companies have not historically followed the same rules that drugmakers have in disclosing medication risks in advertisements. But the FDA has started cracking down on misleading drug ads.

A national shortage of weight loss medications in 2022 opened the door for compounding pharmacies to manufacture these drugs. But since the FDA declared the shortage over last year, companies that offer compounded drugs are increasingly facing legal and regulatory challenges related to their marketing tactics.

Mounjaro manufacturer Eli Lilly and other drugmakers are suing multiple telehealth companies for promoting compounded versions of their drugs. In one legal complaint, Eli Lilly alleged Mochi Health had engaged in “deceptive” business tactics. In a motion to dismiss the lawsuit last year, lawyers for Mochi Health called the complaint part of a “nationwide campaign to bolster Lilly’s profits by dictating patient care through the elimination of compounded drugs as a treatment option for weight management.” The lawsuit is ongoing.

Eli Lilly spokesperson Michael Jamison said in a written comment that telehealth companies sued by the drug manufacturer threaten “patient safety by falsely promoting supposedly ‘personalized’ compounded tirzepatide” and mislead “consumers about the safety, clinical testing, and effectiveness of their compounded knockoffs.”

Meanwhile, Novo Nordisk has filed 130 lawsuits against “entities engaged in unlawful marketing and sale of knockoff semaglutide drugs,” said Liz Skrbkova, a spokesperson for the drugmaker.

She said the company is committed to “protecting patients from unapproved knockoff drugs made with foreign, inauthentic active pharmaceutical ingredients that pose significant safety and efficacy risks.”

The Trump administration sent a in September and February to online companies such as , , , and . The FDA said these and other companies had made false or misleading claims related to compounded versions of weight loss drugs.

“Your claims imply that your products are the same as an FDA-approved product when they are not,” the agency’s Center for Drug Evaluation and Research on Sept. 9. HHS later referred the company to the Department of Justice after it announced the launch of a $49 version of Novo Nordisk’s Wegovy pill.

When asked about the FDA warning, Abby Reisinger-Moley, a spokesperson for Hims & Hers, pointed to a announcing a shift away from compounded weight loss drugs. The company said in the press release that it had entered into an agreement with Novo Nordisk to sell name-brand versions.

Alex Smith, CEO of Join Josie, an online platform that helps women in menopause lose weight by prescribing GLP-1s, said his company also made changes in response to an FDA letter, to include removing Join Josie’s name from medication vials. “Which I agree with,” Smith said, “because you don’t want patients thinking you’re the compounding pharmacy.”

SkinnyRx and Genesis Health International did not respond to requests for comment.

But these warnings aren’t the first time the federal government has stepped in to ensure that telemedicine is being used appropriately, said Mei Wa Kwong, executive director of the Center for Connected Health Policy.

Prior cases involved attention-deficit/hyperactivity disorder medications and other controlled substances prescribed by telehealth providers, she said. While those drugs pose more risk to patients than GLP-1s, the companies were also accused of improperly screening potential customers.

The onus still falls on consumers to research companies before signing up for their services, Kwong said.

“Always approach anything on the internet with a hint of skepticism,” Kwong said.

‘Keeps Getting Worse’

McClain, the Tennessee woman hospitalized this year after a GLP-1 overdose, said she lost 50 pounds a few years ago by taking a name-brand GLP-1 prescribed by her doctor.

At the time, the medication was covered by her health insurance. This year, when she was ready to take a GLP-1 again following a pregnancy, the drug was no longer covered for weight loss.

To save money by obtaining a cheaper, compounded GLP-1, McClain signed up for Mochi Health after doing her own research. “That was just the most affordable option,” she said.

But within hours of her first dose, she said, she found herself on the phone with poison control.

After her overdose, McClain said, she spoke to a clinical director at Mochi Health, once by phone but mostly via email, about her lingering symptoms before communication paused.

David Pilip, a spokesperson for Mochi Health, said in a statement that the company would not discuss individual patients due to privacy obligations. But he said adverse events are “immediately flagged” and “investigated with extreme precision.”

“Mochi Health takes patient safety extremely seriously,” Pilip wrote in an email. “We promptly initiated a review and have been in direct and ongoing communication with the patient to reach a resolution. We remain committed to doing so.”

McClain anticipates her healthcare bills related to the hospital stay will total at least $900. She said that to get the $159 refund for her three-month membership and reimbursement for the hospital expenses, she has been asked to sign a document saying she won’t take legal action against the company. Her experience, she said, “just keeps getting worse.”

NBC News producer Jessica Herzberg and �������ýҕ�l Health News senior correspondent Fred Schulte contributed to this report.

Do you have an experience using an online company for healthcare services or medicinal products that you think others should know about? Click here to contact our reporting team.

When Christine Wood received a $12,000 bill from Bristol Hospital, she thought it must be a mistake. It was more than she and her husband made in a month combined.

“I’m freaking out,” said Wood, who lives in a 1,700-square-foot home in Terryville, a village just outside Bristol, Connecticut. “I don’t understand it.”

Wood, 52, had weight loss surgery at Bristol Hospital in 2022, hoping it would help with her sleep apnea and the pain in her knees and back. Before scheduling the procedure, she checked with her insurer, she said, and was told the surgery would cost $5,000 out-of-pocket. She paid in advance.

More than six months later, Bristol sent Wood another bill that pushed the cost of her surgery to more than $17,000. Wood said she tried to dispute the charge. The hospital sued her.

“That’s ridiculous. I was told so many times by Aetna: ‘$5,000 out-of-pocket,’” Wood said. “I never would have had the surgery had I known it was going to cost almost 20 grand.”

Wood is among more than three dozen Connecticut patients the Connecticut Mirror and �������ýҕ�l Health News interviewed over the past year who were sued by their hospital or physician over unpaid bills.

The patients include teachers, small-business owners, a postal worker, a retired nursing home aide, a nurse, and a hotel bellhop. Most had jobs and health insurance. Nearly all said they wanted to pay what they owed.

Patients taken to court described baffling bills, confusing health plan rules, and frustrating and fruitless telephone calls to hospital billing offices and health insurers’ customer-service lines. Even when they tried to resolve their outstanding bills, many said they couldn’t get answers.

Their experiences encapsulate breakdowns in the healthcare system that trap patients in debt. Health insurance didn’t cover care for reasons they couldn’t understand. Several patients did not qualify for financial assistance from providers, despite modest incomes. If they committed to pay, patients were hit with liens on their homes or interest payments and court fees that piled new debt onto their medical bills.

The industry’s key players blame one another for a broken system. Providers say insurers’ saddle patients with massive bills even when they have coverage. Insurers say at rates that outpace inflation.

Meanwhile, patients are stuck with the fallout. In 2022, about carrying medical or dental debt.

“It’s bad enough that I have bad health and have to pay mountains of medical bills,” said Samantha Mantiera, whom Danbury Hospital sued in 2024 over $10,000 she said she was erroneously charged. “Then to constantly be dealing with incorrect bills and then a lawsuit on top of it took me over the top.”

Mantiera said she spent months trying to explain to the hospital and then a collection agency that her insurance statements indicated she owed just $260. She was sued anyway.

After Mantiera contested the lawsuit, Danbury Hospital withdrew it, court records show.

Mantiera said she and her husband now travel up to an hour from their Brookfield, Connecticut, home to avoid hospitals owned by Danbury’s parent company, now called Northwell Health.

Kathy Holt, who leads the state Office of the Healthcare Advocate, said that in the past several decades healthcare has only gotten harder for patients to navigate. The agency fields thousands of calls every year from residents looking for help with medical billing questions.

“I’ve talked to too many people who have just given up,” Holt said. “The system has been made so hard for them, and I feel like it’s deliberate.”

‘They Would Not Talk to Me’

Debt collection lawsuits against patients have declined in Connecticut since 2019, a CT Mirror-�������ýҕ�l Health News analysis of state court records found. And court records show most Connecticut hospital systems have stopped suing patients, including the state’s two largest systems, Yale New Haven Health and Hartford HealthCare.

Most hospitals stopped suing patients during the covid-19 pandemic as they reevaluated their collection practices, said Sarah Ginnetti, chief revenue cycle officer at UConn Health. The system ceased lawsuits in 2022, records show.

“In some of those circumstances, it just felt misaligned with our mission as an organization,” Ginnetti said. “For the small handful of cases that we might gain some type of legal victory, we really didn’t feel as though that would be our best path forward.”

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Yale New Haven Health and Hartford HealthCare would not discuss why they stopped suing patients, instead issuing statements about their financial assistance programs.

Scores of medical providers — including physician groups, dentists, and hospitals — , data shows. The CT Mirror-�������ýҕ�l Health News analysis found more than 1,500 healthcare-related debt cases filed in Connecticut courts in 2024.

This included lawsuits by Bristol Health, an independent local health system that includes Bristol Hospital, and Nuvance Health, a chain of seven hospitals recently acquired by Northwell Health, a multibillion-dollar system based in New York.

Nuvance hospitals filed over 4,000 collection lawsuits from 2019 to 2024, records show. Over the five years, the health system accounted for more than a quarter of the roughly 16,300 medical debt collection lawsuits against patients identified in state court records.

Hospital officials and other medical providers say they try to work with patients who have trouble paying their bills. Nikki Schulz, chief revenue officer for Northwell’s Connecticut hospitals, said in a statement that years ago the system “eased” its collection practices, leading to a “precipitous decline” in medical debt referred to collections.

“We fundamentally retooled our approach to align with industry best practices,” Schulz said. Records show the health system sued about 200 patients in 2024, down from 2,200 in 2019.

Healthcare executives also say they have a responsibility to try to collect.

“I don’t have a choice,” said Bristol Hospital CEO Kurt Barwis. “What we’re trying to do is sustain a mission of taking care of this community.”

Bristol Health is one of Connecticut’s most financially strained systems, and executives are currently in talks with the administration of Democratic Gov. Ned Lamont about an . The proposed deal is, in part, an effort to keep the hospital afloat.

Barwis said the hospital has taken steps to help patients with unexpected bills, including enlisting financial counselors to reach out to patients before elective procedures to discuss cost and financial assistance.

But Wood, who was sued by Bristol, said no one from the hospital talked to her before her surgery. When she called the hospital after receiving the $12,000 bill, she said she was told there was nothing they could do because her insurance had denied the claim.

“They would not talk to me about it,” Wood said. “They wanted their money.”

Bristol spokesperson Albert Peguero also blamed Wood’s insurer and said the hospital worked with Wood as she went through numerous insurance appeals with Aetna.

Wood didn’t fare any better with Aetna. It turned out that her health plan covered only $15,000 worth of bariatric surgery, meaning she was responsible for any bills that exceeded that.

Aetna spokesperson Shelly Bandit said Wood had been notified of this provision, though Wood disputes this.

The back-and-forth with the hospital and the insurer enraged Wood. But after she was sued, she concluded she had no more options. She settled with Bristol, agreeing to pay the full balance on a payment plan of $150 a month, court records show. Under the agreement, it would take Wood almost seven years to pay off the debt.

Last year, Wood faced additional financial challenges after her mother died and her husband lost his job and was unemployed for six months.

Wood said she’s regained about a third of the 100 pounds she lost after her surgery because of the stress. Some months she pays Bristol less than $150. In January, the hospital placed a lien on her home.

“We don’t have savings. We don’t have the extra money. We’re living check by check,” Wood said. “We’re working-class people trying to make a living, trying to do the right thing. And we always get screwed.”

‘I Don’t Have Hours on End’

It’s difficult to know how many medical debt lawsuits arise from disputed bills. But most U.S. adults with healthcare debt say they’ve received a bill in the past five years that they thought contained an error, according to a .

The prevalence of disputed medical bills is one reason many advocates for patients say hospitals and other healthcare providers shouldn’t sue people they treat.

“Understanding insurance to begin with and then navigating denials or bills that are not plainly understood leaves patients stuck in an opaque system where they have the least leverage and power,” said Eva Stahl, a vice president of Undue Medical Debt, a nonprofit that has worked with states to buy and retire debt — including for more than 150,000 Connecticut residents.

“Patients understandably are left with questions and confusion,” Stahl said.

Timothy Bigham, who owns a construction company and was sued in 2023 by Danbury Hospital, said he never understood why he was billed more than $64,000 after he was hospitalized following a 2019 heart attack.

Bigham, who lives in Danbury, Connecticut, said he was insured at the time. But soon after he got home, Bigham began getting regular calls from the hospital. He was told his insurer wasn’t paying the bill because he refused to “release medical records,” he recalled.

“I had insurance when I had the heart attack, but it’s my job to get the insurance company to pay?” Bigham said. “I’m self-employed. I work in construction. I don’t have hours on end to sit on the phone trying to talk to somebody at an insurance company.”

Bigham said he ultimately “stopped dealing with it” because he didn’t know what else to do.

Then, in 2023, Danbury Hospital sued him. A judge dismissed the case in 2025, citing the hospital’s “failure to prosecute with reasonable diligence,” according to court records. But by then, the alleged debt had devastated Bigham’s credit score, tanking it by over 100 points, he said.

Northwell’s Schulz declined to comment on any specific patient cases, citing privacy laws.

Connecticut barring medical debt from consumer credit reports.

A handful of states have tried to protect patients from lawsuits through limiting when hospitals can pursue legal action. Illinois, for example, prohibits lawsuits against uninsured patients who prove they can’t afford their unpaid bills. Nevada, New York, North Carolina, Maryland, and Virginia prohibit liens and foreclosures for medical debt.

‘It Was a Nightmare’

Dominique Jean Pierre was equally surprised by the $20,000 bill he got after he was hospitalized at Norwalk Hospital with a urinary tract infection in July 2020.

Jean Pierre, 66, had worked for nearly two decades as a bellhop at a Hilton hotel in Stamford owned and operated by Atrium Hospitality, a Georgia-based company. When he got sick, the hotel was temporarily closed because of covid lockdowns.

What Jean Pierre didn’t realize, he said, was that the hotel had also cut off employee health benefits. He said he was told by the hospital that he’d be responsible for the bill.

“It was a nightmare,” he said.

Jean Pierre said he begged his manager for help but was told there was nothing the company could do. Atrium Hospitality did not respond to requests for comment.

Two years after Jean Pierre’s hospitalization, Norwalk Hospital sued him for more than $20,000, court records show.

Jean Pierre said he tried twice to apply for financial assistance, but the hospital told him he and his wife made too much to qualify, even though his medical bills totaled almost a quarter of their annual income of about $87,000.

With nowhere to turn, Jean Pierre settled with Norwalk Hospital, now part of the Northwell system, in 2025, agreeing to pay the full bill in $100 monthly installments, records show. At that rate, he will be paying off the debt until 2042.

After the settlement, he said, the judge encouraged him to reach out to elected officials to try to get the debt canceled. Jean Pierre was exhausted.

“He says to me, ‘You have to go to your senators. Go to the governor.’ I said, ‘That’s too much. [I’m just going to] let it go.’”

Jean Pierre has left the Hilton and now works as a personal care attendant, as does his wife. But he said it still nags him that businesses and healthcare providers received millions of dollars in government aid during the pandemic, while he was left with $20,000 in medical debt.

“They gave money for the hotel. They gave money for the hospital. They gave money for a lot of stuff,” he said. “But we don’t see none.”

‘I’m Not Trying To Run Away’

Other patients said they felt trapped, even if they tried to do the right thing.

Deneen Brown, who runs a small daycare out of her home in Norwalk, was sued by Norwalk Hospital in 2024 for $7,200 over bills she allegedly incurred “on or about 2019 and 2020,” according to the lawsuit.

Brown said she was stunned by the lawsuit, as she believed she’d had health insurance at the time. But as a small-business owner who took pride in maintaining good credit and staying on top of her finances, she said she committed to taking care of it.

“I’m not trying to run away from something that may be my responsibility,” Brown said. “If you say I owe it, I’m going to figure it out, and I’m going to pay it.”

In January 2025, she agreed to a nearly 13-year payment plan of $50 a month, court records show. Often she pays more, she said.

The following month, the hospital placed a lien on her home. Brown said she never realized the hospital would continue to penalize her, even after she agreed to a payment plan.

“Had I known that, I would have never settled," she said.

This article was produced in partnership with , a statewide nonprofit newsroom that covers public policy and politics.