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

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

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

“My energy is really limited,” she said.

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

‘A Breakthrough Moment’

On June 9, 2025, after the Assembly approved the bill, Netherland was in the state Senate chamber, watching the aye votes mount, and seeing it pass.  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.”

The New Old Age is produced through a partnership with .

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The Department of Health and Human Services is seeking data from little-known state systems that allow hospitals and clinics to exchange detailed, identifiable patient information, ºÚÁϳԹÏÍø 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 ºÚÁϳԹÏÍø 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 ºÚÁϳԹÏÍø News. Under the proposal, HHS would get data from 90% of the population’s medical records by 2028.

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

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

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

A System To Monitor Chronic Disease

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

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

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

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

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

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

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

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

A Kennedy Partner in Nebraska

At least one state has been cooperative.

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

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

“They’re looking at the data differently and providing some insights back to the CDC,” Bland told ºÚÁϳԹÏÍø 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.”

ºÚÁϳԹÏÍø News data reporter Maia Rosenfeld contributed to this article.

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

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

State health officials aren’t fighting it.

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

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

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

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

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

A Short-Lived Success Story

In 2014, Michigan had the in the country.

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

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

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

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

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

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

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

‘An Unsafe Setting’ for Medical Staff

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

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

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

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

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

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

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

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

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

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

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

The Workaround

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

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

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

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

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

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

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

No judgment. No pressure.

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

Hybrid May Not Be Enough

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

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

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

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

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

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

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

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

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

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

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

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

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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 ºÚÁϳԹÏÍø 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.

ºÚÁϳԹÏÍø 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 .

ºÚÁϳԹÏÍø 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 ºÚÁϳԹÏÍø 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. ºÚÁϳԹÏÍø 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.

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.

Previous Next

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.

Methodology

ºÚÁϳԹÏÍø News and The Associated Press sifted through thousands of immigration habeas corpus claims to find allegations of medical neglect from people detained by U.S. Immigration and Customs Enforcement during the second Trump administration.

Without a comprehensive, publicly available dataset of medical complaints by those in ICE custody, we used immigration habeas corpus claims to identify detainees’ healthcare-related allegations raised in federal court. Although the intended purpose of habeas corpus is to challenge the legality of a petitioner’s detention — rather than conditions of their confinement — these filings sometimes include detainees’ claims of inadequate healthcare.

But habeas corpus filings are not always publicly available. Federal rules restrict how members of the public can access habeas petitions filed by people in immigration detention. For most of these cases, court websites publish only court orders and dockets describing other filings. The initial petitions are available only through in-person visits to federal courthouses across the country. Habeas Dockets, a project of the nonprofit Immigration Justice Transparency Initiative, coordinates a nationwide network of volunteers to gather these petitions and make them available online.

ºÚÁϳԹÏÍø News and AP analyzed the dockets of roughly 33,000 cases filed by detainees from Jan. 20, 2025, through March 2026. The vast majority of cases had only basic procedural information, like dates of court filings and rulings. Only about 4,400 included the original petitions.

We also gathered a few dozen case files from courthouses, lawyers, and the Massachusetts federal district court website, which posts most petitions under a unique standing order.

We ran keyword and semantic searches of court records, including petitions, motions, and orders, for terms and phrases potentially related to medical neglect, such as surgery, medications, inadequate medical care, and treatment for chronic conditions such as diabetes and high blood pressure.

We found about 500 cases potentially alleging medical neglect. At least two reporters reviewed each case manually, yielding more than 300 cases containing specific allegations in sworn filings of delayed, denied, or deficient healthcare.

To be conservative, we excluded dozens of cases that alleged inadequate medical care but lacked specifics, for example a petitioner writing, “I have been sick and don’t get proper treatment,” or a judge noting a petitioner “complains that ICE is ignoring his medical problems.” We also excluded cases in which petitioners claimed only that they were denied special diets, exercise, or other accommodations that they said were key to managing their health conditions, such as a petitioner writing, “I suffer from Parkinson’s and cannot properly exercise,” or claiming that the food provided was unfit for a person with diabetes.

The cases we analyzed were neither randomly selected nor representative of immigration habeas filings nationwide. The claims were not independently verified. Many filings are not publicly available, and not all detainees raise medical concerns in court, so our account of cases represents a limited window into the landscape of claims, rather than a comprehensive picture.

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

This report is a collaboration between The Associated Press and ºÚÁϳԹÏÍø News.

This <a target="_blank" href="/courts/ice-immigration-detention-medical-care-neglect-court-records-ap-investigation/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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

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

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

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

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

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

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

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

Critical Rapid Response

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

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

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

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

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

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

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

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

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

Delicate Conversations

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

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

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

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

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

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

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

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

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

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

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

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On the Road To Find Out

Your article “Efforts To Understand the Nation’s Drugged Driving Problem Stall Under Trump” (May 19) missed the mark.

There is a real lack of data on drug-impaired driving across the country, but it’s not due to federal policy. The fact is, science has not yet found a simple, accurate way to measure if someone is too high to drive. And many local police departments just lack the resources to test drivers for drugs.

The National Highway Traffic Safety Administration under the Trump administration has prioritized countering drug-impaired driving. The agency continues to be a leading funder of drug-impairment research. To address state and local enforcement shortfalls, NHTSA provides ongoing funding, training, and resources. Unlike the previous administration, we’ve vigorously engaged with law enforcement to encourage road stops to combat drug-impaired driving. And, while some employees voluntarily left the agency last year, NHTSA has ensured that staff resources remain focused on this priority.

— Jonathan Morrison, administrator of the National Highway Traffic Safety Administration; Washington, D.C.

Shining Light on Suicide Rates and Poverty

I am a professor of risk and policy analysis at Indiana University who recently read Aneri Pattani’s piece entitled “Low Wages, Empty Plates, Heavy Toll: Rethinking Suicide Prevention” (May 12). I found it gracefully written and emotionally moving in its use of real-world stories. But I think the scientific foundations of your piece are, at best, murky. Please let me explain why.

There is no question that when we compare households of different income levels, the suicide rate is much higher in low-income households than in higher-income households. It is tempting to conclude that people living in a low-income household may be inclined to die by suicide because they lack sufficient resources to access life’s necessities. This is what I take to be the premise of your piece, linking suicide prevention to the minimum wage law and policy around the Supplemental Nutrition Assistance Program.

Scientifically, the cross-sectional household comparison does not establish a causal relationship between poverty and risk of suicide. The obvious reason is that there are many other possible explanations for the association: higher rates of mental illness in low-income households, higher rates of substance misuse in low-income households, lower levels of educational attainment in low-income households, and so forth. Poverty itself may be a causal factor, but these other variables matter and may be much more important than poverty per se.

If poverty is a powerful cause of suicide, we should be able to discern changes in the rate of suicide during periods when the rate of poverty changes substantially. Take the period 2010 to 2019, when the U.S. poverty rate declined steadily and substantially (the period of recovery from the financial crisis and the Great Recession of 2007-09). In 2019 (the last year before the covid-19 pandemic), the overall poverty rate, 10.5% — and the elevated rates among Blacks and Hispanics — were the lowest recorded since federal poverty statistics began in 1960 (when it was about 22%). Yet the decade from 2010 to 2019 saw a surge in the nation’s suicide rate. In fact, if you take the longer period of 2000 to 2022, you find steadily rising rates of suicide in the United States, yet virtually no change in overall poverty rates.

Such temporal comparisons do not prove that poverty does not cause suicide. What they show is that poverty is not a highly potent cause of suicide. My guess is that poverty per se is a relatively minor cause of suicide, but even a minor causal role does not suggest that an increase in SNAP or Temporary Assistance for Needy Families benefits would reduce suicide.

One final point is about the large means-tested safety net in the United States. You are on firm ground in raising questions about what the Trump administration is doing to the safety net. But your readers need to appreciate that U.S. taxpayers are supporting a $1 trillion-a-year suite of anti-poverty programs, excluding Social Security and Medicare. The largest of those programs are Medicaid, coupled with the Children’s Health Insurance Program, and SNAP. But there are also the Affordable Care Act premium subsidies, the state block grants for TANF, childcare, job training, the Department of Housing and Urban Development’s rental vouchers, Pell Grants, federal student loans, and more. The means-tested safety net is much larger than the defense spending and growing rapidly as a share of the federal budget.

My view is that these programs are largely worthwhile, but not because they have played a powerful role in preventing suicide. A few budget numbers on the size of the safety net would have strengthened your piece and signaled to readers that you appreciate our country’s major investment in safety net programs.

Obviously, your piece stimulated me, which is a good thing.

— John D. Graham; Bloomington, Indiana

Single-Payer vs. All-Payer

I’m curious why Xavier Becerra — or any of the other California gubernatorial candidates, for that matter — aren’t talking about an “all-payer” model, similar to what was in place in Maryland (“In California Governor Race, Single-Payer Is a Litmus Test. There’s Still No Way To Pay for It,” May 8). There are many reasons a single-payer model wouldn’t work in one state, only one of which is the difficulties in figuring out reimbursement for people who travel out of state and receive healthcare while traveling. The all-payer model, which is being replaced by the AHEAD (Achieving Healthcare Efficiency through Accountable Design) model from the Centers for Medicare & Medicaid Services, is something worth considering in California. With the sheer size of the population, having unified billing, coding, and metrics across all payers could save millions in administrative costs.

We need to start with ideas that are feasible and then work our way toward something bigger. Let’s at least have a conversation about something that is possible to do.

— Kathryn Peisert; San Rafael, California

Bolstering the Home Care Workforce

This is another instance of money not being used wisely. In the article “Kids Keep Getting Stuck in Hospitals, Even After Being Cleared for Discharge” (May 18), pediatrician Elaine Lin noted a shortage of home care aides. In some states, private businesses provide home care services. Due to a profit incentive, these businesses often pay home care aides low wages.

This is one of the factors driving worker shortages. Why not try transferring a portion of the money now spent on high-cost hospital stays to better-trained and better-paid home care aides? Of course, each state has its own laws, regulations, and funding sources to navigate. However, it seems the willpower to collaborate is a necessary piece to solve this problem.

Some children could benefit from receiving care in a group home setting or at home with family members. If money can be better spent, let’s start with creating a system to increase the pay of better-trained and better-paid home care aides — a system that should increase the quality of services at reduced costs.

— Russell Anthony; Nashville, Tennessee

Essential Help While We Age

Your recent article “The Help That Many Older Americans Need Most” (April 27) captures something the healthcare system has been slow to accept: What happens to older Americans’ health is determined less by what happens in the clinic than by what happens at home, in the neighborhood, and at the kitchen table.

The evidence is stark. Nearly older adults live in poverty, and persistent food insecurity. These challenges reinforce one another in a devastating cycle: Loneliness worsens food insecurity, food insecurity accelerates functional decline, and functional decline deepens isolation.

Community health workers are doing essential work to interrupt these cycles. But too much of that work remains invisible. Providers refer patients to community resources with no way of knowing whether anyone followed up. Community organizations serve people without a consistent way to report back. The result is a system that means well but cannot learn from itself, and older adults, especially those in rural areas, are left to navigate the challenges alone.

Technology can change that. Leaders nationwide are turning to closed-loop referral networks that enable community health workers and clinical providers to connect individuals with food assistance, transportation, housing support, behavioral health services, and other essential resources. Importantly, technology helps them track whether those services are actually received.

Beyond the initial referral, these networks monitor improvements in specific health metrics, like A1c levels and hospital readmissions. By identifying unmet needs early and coordinating timely support, they help prevent health crises and alleviate

Both Oregon and Missouri offer strong examples of what this looks like at scale. In Oregon, statewide closed-loop referral technology, available across all 36 counties, served . It also delivered $29 million in health-related social needs (HRSN) benefits to 15,000 Medicaid clients under Medicaid’s 1115 waiver last year alone.

In Missouri, the has seen its participating hospitals and clinics achieve a 19.6% increase in individuals with controlled blood pressure and an 18% increase in behavioral health follow-up after visits to the emergency department.

The Rural Health Transformation Program offers a concrete opportunity to build on this model. Policymakers should seize the opportunity to invest in infrastructure that makes social care coordination real: not just referrals sent, but services confirmed, outcomes tracked, and communities strengthened.

For an older adult in rural America, the difference between knowing where to turn and not knowing can be the difference between staying home and ending up in the emergency room. That’s the gap these systems can close.

— Halima Ahmadi-Montecalvo, vice president of research and evaluation for Unite Us; Washington, D.C.

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The 59-year-old retired teacher, who recently moved from Ohio to Michigan, now pays $341 a month for a pair of plans, one that covers routine and urgent care and another that pays fixed amounts for hospital stays. Neither meets federal standards for comprehensive coverage.

Though she practices yoga and is healthy, Miller said she still feels “vulnerable.” If she lands in the hospital, her plan pays a flat $2,000, a fraction of the of an average hospital stay.

“I don’t gamble. But I may as well,” she said. “This is gambling.”

Congress’ decision late last year not to extend enhanced marketplace tax credits has boosted the appeal of alternatives to comprehensive insurance — plans like Miller’s, which have lower premiums but don’t meet ACA standards for coverage or consumer protections. Unlike plans sold on the exchanges, these options — some sold by major insurers, others by small companies or nonprofits — can deny claims with few or no legal rights for consumers to appeal. The plans are not required to cover “essential health benefits,” such as preventive care, and can impose annual or lifetime caps on benefits.

There is debate over whether these options help or harm patients. Consumer advocates dismiss them as “junk insurance,” while proponents say restricting alternatives to pricey marketplace plans risks driving up the number of uninsured. Some states, including Kansas and Florida, and the federal government itself have eased regulations on such plans or created incentives to join them, while other states, including California and Massachusetts, have tried to deter enrollment in alternative insurance. Those regulatory guardrails, however, are now being stress-tested as premiums blow out household budgets.

Alternative insurance takes many forms, including short-term policies, which were designed to bridge temporary gaps in coverage and often exclude preexisting conditions, and fixed-indemnity plans, which pay a flat rate per service regardless of how high costs go and are intended for supplemental use. Arrangements in which people pool their money to cover one another’s bills, including faith-based “healthcare sharing ministries,” also provide a cheaper alternative to the marketplace options. Because they are not considered insurance under federal or state law, they are not legally bound to pay for even .

Enrollment data for alternative plans is mostly confidential, but several indicators point to shifts in the market. Recent estimates suggest marketplace enrollment from 2025, and a of people on the exchanges last year found that 5% switched to private, nonmarketplace individual coverage, including plans that don’t comply with the ACA. Covered California, the state’s marketplace, plans to survey former enrollees to find out where they went.

Insurance industry insiders also report that, amid the expiration of subsidies, alternative plans are making a marketing push. Colorado insurance broker Samantha Albritton said that before ACA open enrollment, she saw more marketing from fixed-indemnity plans than in previous years. One healthcare sharing plan, Zion HealthShare, had more than 75,000 members in February — a 50% increase since last June, it said in a statement.

Critics of these alternative plans say the major issues occur when people use them as primary insurance and don’t realize the coverage is inadequate until they need it most. “Humans have bodies that can fail them,” said Amy Killelea, an assistant research professor at Georgetown University’s Center on Health Insurance Reforms.

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Céline Gounder, ºÚÁϳԹÏÍø News’ editor-at-large for public health, discussed the diversion of a Detroit-bound plane to Canada over Ebola concerns on CBS News’ CBS Mornings on May 21. Gounder also discussed how the Democratic Republic of Congo’s Ebola outbreak has been declared a global health emergency on Fox’s LiveNOW on May 18.

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ºÚÁϳԹÏÍø News senior correspondent Renuka Rayasam discussed Georgia’s debate over licensing midwives on WUGA’s The Georgia Health Report on May 15.

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• Read reporter Lisa Rab’s “License To Deliver: Some Midwives Break the Law To Assist With Home Births.”

ºÚÁϳԹÏÍø News senior correspondent Angela Hart discussed California Gov. Gavin Newsom’s budget rollbacks on KQED’s Political Breakdown on May 14.

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ºÚÁϳԹÏÍø News California correspondent Christine Mai-Duc discussed Medicaid funding in California on LAist’s AirTalk on May 14.

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The workers, Nathan Jones and Trent Umberger, died in the September 2024 crash, as did a passenger in the Jeep. Tests found that the driver, Patrick Sneddon, then 59, had oxycodone and six times Colorado’s presumed impairment threshold for THC — the psychoactive compound in cannabis — in his blood. He pleaded guilty and is serving on three counts of vehicular homicide and other charges.

“Our four children are completely crushed without their Dad,” wrote Kristine Umberger, the wife of Trent, in a victim impact statement for the local district attorney. “We have lost our ability to live life like we used to.”

Federal highway safety officials have long tracked the role of alcohol in fatal crashes, but they don’t track deaths that involve a driver under the influence of drugs or a combination of drugs and alcohol.

That discrepancy is partly due to the challenges of proving impairment, since some drugs remain detectable for weeks after use. Sneddon’s attorney, Jennifer Gregory, said a driver can be presumed impaired under Colorado law if their blood contains 5 nanograms of THC or higher per liter. But that “permissible inference” threshold is different from a legal limit — such as the 0.08% blood alcohol content limit — and the level set by Colorado is not supported by published scientific studies, Gregory said.

Such information could prove useful as the nation struggles with , the on marijuana, and more than 40 states have legalized or decriminalized some forms of cannabis and .

“Impaired driving is a top public safety issue that extends beyond alcohol,” said Sean Rushton, a spokesperson for the federal highway safety agency, which is tackling the issue collaboratively, with resources to ensure a “comprehensive and coordinated approach.”

But President Donald Trump’s cuts to the federal workforce since he returned to office in 2025, along with dwindling federal investments, mean that efforts to expand and improve the tracking of impaired-driving deaths nationwide have slowed.

The gap in data can be significant. In Mesa County, Colorado, where Jones and Umberger were killed, the coroner’s office tracks various forms of impaired-driving fatalities. From 2017 through 2024, a third of traffic deaths involved alcohol alone, according to data from the county coroner’s office.

When drugs are factored in, nearly half of Mesa County’s traffic deaths over the same period involved a driver intoxicated with alcohol, drugs, or a combination, according to the coroner’s reports.

“If you want to solve a problem, you need to understand the problem,” National Transportation Safety Board researcher Jana Price said. “If you only know that alcohol is present, then it limits your ability to fully understand what might have been impairing a person or a population of people. It trickles into the countermeasures that we use as a society to address the problem.”

Identifying a Hidden Issue

NTSB researchers that, across four geographical samples of roughly 26,000 drivers, about half of those arrested for impaired driving and more than a quarter of drivers killed in crashes tested positive for more than one substance, such as cocaine, sedatives, and antidepressants. The analysis also found that only four states and the District of Columbia drug-tested more than 60% of fatally injured drivers in 2020.

Those findings led the NTSB, an independent federal agency that investigates major incidents, to make a series of recommendations to the and states to establish a comprehensive, nationwide dataset on impaired driving.

But hurdles remain to creating such a system. Fatality and injury reports submitted to the NHTSA database often feature missing or erroneous data, according to a .

Varying state laws around testing arrestees and decedents for drugs make getting uniform data difficult, according to , a former employee of NHTSA’s impaired-driving division, as does a lack of proven metrics like blood alcohol content to measure drug impairment, not just the presence of a drug.

“It’s a slow process, which is incredibly difficult when you know that each day that passes is risking a lack of safety for however many people facing the potential of a drug-impaired-driving crash,” Cash said. “But some progress is better than no progress.”

Acknowledging how long those efforts will take, the NTSB also recommended that NHTSA build an interim surveillance system that would use data from trauma centers to create a national sample of crash-involved impaired drivers.

The agency made some headway, reporting in 2023 that it was conducting its own study with the help of 11 trauma centers and medical examiner offices. It also helped California establish a 19-month statewide surveillance system, which NHTSA will use to evaluate the feasibility of a nationally representative system.

Such programs are useful for public awareness and for improving the ability of police to understand drugged driving patterns that can help them tailor enforcement, said , a University of California-Davis associate professor who researches toxicology and was involved in the California program. But some trauma centers, especially in rural areas, often lack the research infrastructure necessary for round-the-clock drug testing and participation.

Still, it’s possible, and he said the benefit is apparent in the findings from California’s surveillance system.

“If you go out there and tell people that 44% of drivers who ended up in the ER from a car accident had at least one potentially impairing substance in their blood at the time of the accident, that gets people’s attention,” Chenoweth said.

Shrinking Research Teams

Since NHTSA’s update to the NTSB three years ago, however, the agency has yet to follow up on the recommendation. Staff cuts and departures at NHTSA last year paint a poor outlook for change.

From 2021 to 2024, the agency . At the end of Trump’s first year in office, NHTSA had dropped to about 550 people due to government-wide cuts and people leaving on their own.

Cash, who now works for the nonprofit Governors Highway Safety Association, was one of five employees who left NHTSA’s last year. That leaves just two staff members in the division, she said.

Ian O’Dowd, a former employee in NHTSA’s , said he was part of a team of 16 people who studied, in part, impaired driving. Only three or four team members are still with the agency, he said.

“At some point, it becomes unwieldy for a handful of people to be managing all of the research work going on,” O’Dowd said.

NHTSA communications director Sean Rushton said the agency has “both the financial and personnel resources necessary to support its programs with multiple offices carrying out this work collaboratively, ensuring a comprehensive and coordinated approach.”

The 2021 infrastructure law, passed under the Biden administration, increased funding for NHTSA’s state highway safety program from about $667 million in 2021 to nearly $953 million this year.

The law included $750 million to modernize crash-data programs, but as of January over $475 million was unused. The funds expired in September unless they were obligated through a signed agreement.

A report by the U.S. Government Accountability Office found that nearly a quarter of entities awarded grants in 2022 had not received a signed agreement when surveyed between December 2024 and March 2025. It also found that over 1 in 5 grantees reported that obtaining timely replies from Department of Transportation staff was moderately or very challenging.

With the Biden-era infrastructure law expiring later this year, Congress could extend the unused crash-data fund or implement a new approach to impaired driving.

In mid-April, House Transportation and Infrastructure Committee Chairman Sam Graves (R-Mo.) said proposed legislation — less than half of the current bill’s $1.2 trillion — with a more “traditional” focus on roads and bridges.

The bill has amid negotiations for more funding, leaving future support uncertain.

“Certainly, we are always hoping that there will be an increase in the amount of money available to do this work,” Cash said. “Whether or not that will happen this year, I don’t know.”

This <a target="_blank" href="/public-health/drugged-driving-impairment-research-stalled-trump-policies/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

Sign-ups were already down in January by about from last year’s . For this year, enrollees then faced premiums that increased, on average, . On top of that, subsidies that help people purchase coverage shrank or vanished.

Now experts are watching how many of the approximately 23 million people who enrolled will fail to pay their share of premiums.

While available data on premium payments is mainly from January, a few states that run their own ACA markets have released information for later months. The sharpest drop in people paying premiums, based on limited data, is , which saw a 28% drop in April compared with the same period a year ago, according to an analysis by Charles Gaba, a healthcare policy analyst and blogger who specializes in the ACA.

The news website NOTUS that it had internal Centers for Medicare & Medicaid Services data showing that roughly 21% of people using the federal ACA marketplace — — failed to pay their share of January premiums, which, if correct, is far higher than at the same time last year.

CMS did not answer questions from ºÚÁϳԹÏÍø News about the enrollment data.

In looking at the early numbers analysts released, “we can’t yet quantify how much worse it will be than in previous years, but it will absolutely be worse because of the sticker shock,” said Ellen Montz, a managing director with the Manatt Health consultancy, who helped oversee the ACA during her tenure with the Biden administration.

The initial results come amid rising public concern about affordability, that are often .

A KFF analysis , for instance, found that the average ACA plan deductible saw the steepest increase in history — growing by 37%, or over $1,000, from $2,759 in 2025 to $3,786 in 2026 as enhanced premium tax credits expired.

Those rising costs pose a political challenge for President Donald Trump and the broader GOP, which has opposed enhanced subsidies to help people purchase Obamacare coverage. Republican lawmakers also passed a spending package last year — enacted as the One Big Beautiful Bill Act — that included provisions expected to reduce ACA enrollment and fueling higher premiums this year.

The enrollment reductions “are real people with real consequences,” Montz said. “The Affordable Care Act is a political lightning rod, but it’s a critical component of the coverage landscape.”

Following the Numbers

Right now, the drop-off rate aligns with what some policy experts predicted, partly because Congress did not extend generous benefits that expired at the end of last year. Those enhanced subsidies had been in place since 2021.

“Overall, the individual market does appear to be trending toward a significant contraction in 2026, and may well resemble” drops projected by the , said a , an analysis arm of the HMA Co.

Based on its analysis, drawn from data provided by 75 insurers, Wakely estimates that average ACA enrollment will end up being 17% to 26% lower this year than last.

So far, the Wakely report says, an average 86% of enrollees made their first payment in January.

Failure to pay premiums varied by state. Those with the lowest drop-off rates had enacted additional help — such as backfilling part or all of the reduced subsidy amounts with state money — or experienced lower premium increases. States that run their own exchanges had higher payment rates (92%) than those served by the federal marketplace (82% to 84%).

Gaba’s initial analysis of data includes more recent numbers from nine of the 20 states that run their own Obamacare marketplaces.

“Georgia could be fairly representative” of other states that did not enact additional protections, Gaba said. For example, payment failure rates, year over year, were 11.6% as of April in New Jersey, and, as of February, 15.7% in Washington state and 8.5% in California.

Only one state in his sample — New Mexico — saw an increase in the percentage of people making premium payments, according to the latest available monthly data. Unlike most, it to fully make up for the lower federal subsidy amounts.

Enrollment figures for the ACA are never static. Traditionally, more people sign up — either through auto reenrollment or by taking initiative to shop — than actually pay premiums, so the numbers tend to be higher at the start of the year.

People drop out over the course of a year for many reasons, such as finding other coverage through a job or by marrying someone with insurance.

Cost, of course, is a factor. This year, because premiums went up and subsidies went down, many people faced what they previously paid toward their coverage.

And the Trump administration ended a special enrollment program that let low-income people enroll year-round.

drops should not be seen solely in the context of rising costs. Paragon Health Institute, a free-market think tank that has become influential among conservatives on Capitol Hill, has long argued that record enrollment numbers in recent years were fueled by fraudulent sign-ups, perhaps in the millions.

, , and policy experts took issue with the methodology Paragon used to estimate improper enrollments, saying they likely were vastly overestimated.

In a , the organization’s president, Brian Blase, doubled down on the fraud findings. Using data that detailed how many people failed to make premium payments each year, on average, from 2014 to 2019 — the year before covid emerged and two years before enhanced subsidies kicked in — he offered this prediction for 2026: About 19 million people would be enrolled by year’s end. Even at that, the note says, the “market would be 90% higher than the pre-COVID average.”

For other experts, however, the biggest explanation for falling enrollment is cost.

Some people had never experienced the ACA before the enhanced tax credits kicked in, so they faced extra sticker shock.

“In economic theory, no matter whether one is left, right, or center, it’s a simple fact that when you raise prices of something, fewer people will buy it,” said Sabrina Corlette, co-director of the Center on Health Insurance Reforms at Georgetown University.

The Long View

The expectation of a lower enrollment trend holding up is one of the key factors likely to translate into higher cost estimates as insurers draw up 2027 rates.

For one thing, though it is still unclear how many people will stay enrolled, it is also unknown whether those enrollees will submit more medical claims than insurers projected. It’s generally thought that younger or healthier people are more likely to drop coverage when faced with growing premiums.

Secondly, there has been a sharp shift by consumers to purchase bronze-level plans, which have smaller monthly premiums but higher deductibles — the amount people must pay out-of-pocket for most treatment, except preventive care, before insurers pitch in. The found that sign-ups for bronze plans jumped from 30% to 40% of total plan selections — growing from 7.3 million in 2025 to 9.2 million people this year. Will they pay? Or will hospitals and doctors be on the hook for uncollected copays or deductibles, and then raise prices to compensate?

Insurers base their premiums, in part, on such analyses.

Another troubling factor for actuaries is the late posting of a key regulation that sets the next year’s rules for ACA health plans. The initial 2027 proposal from the Trump administration came out in mid-February and included aggressive new ideas — such as sharply increasing deductibles for certain types of ACA plans or allowing insurers to offer plans with no set networks of medical providers. It was , well into the time when insurers are calculating premiums for the following year. Many of the proposed changes, with some modifications, were approved, such as allowing for higher annual deductibles in some types of coverage.

“This is definitely a challenging year to be an actuary,” said Louise Norris, a health policy analyst for healthinsurance.org, a consumer information and referral website affiliated with Trove Group, an insurance agency.

“We know for sure that the individual market has gotten smaller and almost certainly sicker, as the people dropping coverage are more likely to be healthy.”

While they “aren’t waving huge red flags” yet, insurers are closely watching trends, said Michelle Anderson, a director at Wakely and co-author of the recent report.

Anderson does not expect an average 26% premium increase like the one seen this year.

Still, Anderson expects the ongoing uncertainty and predicted decline in enrollment, which will vary by state and insurer, to play a role in setting next year’s premium rates.

“It would not surprise me if there were some double-digit increases,” Anderson said.

ºÚÁϳԹÏÍø News reporter Rachel Spears contributed to this article.

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