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 鈥� first introduced in New York in 2016 鈥� could become law.

鈥楢 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 鈥� Oregon’s law, the first in the country, was enacted in 1997 鈥� 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, 鈥榃e have 10 years in California, 18 years in Washington, and 29 years in Oregon, and nothing bad has happened.’ It becomes more accepted.”

鈥榊ou 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 鈥榊ou need A, B, and C,’ and Columbia-Presbyterian can say, 鈥榃e 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 鈥� 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 鈥� the relentlessly disabling neurological disorder also known as Lou Gehrig’s disease 鈥� 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, 鈥楶eople should have this option.’ Now, they will.”

The New Old Age is produced through a partnership with .

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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 麻豆女优 Health News and The Associated Press found. Detainees say they didn’t get medications on time 鈥� or at all 鈥� 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.

麻豆女优 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 鈥� with suicides .

麻豆女优 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 鈥� dizziness, a nosebleed, and a headache 鈥� 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.

鈥楤razen 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 麻豆女优 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 鈥� 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. 麻豆女优 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.

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 鈥� before the detained population soared 鈥� 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 鈥� and expensive 鈥� 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 鈥� 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

麻豆女优 Health 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 鈥� rather than conditions of their confinement 鈥� 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.

麻豆女优 Health 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 麻豆女优 Health News correspondent Kate Wells contributed to this report.

This report is a collaboration between The Associated Press and 麻豆女优 Health News.

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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 鈥� 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 鈥� some sold by major insurers, others by small companies or nonprofits 鈥� 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 鈥� 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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A bill in March then by Democratic Gov. Jared Polis allows Colorado to further uncouple itself from federal guidance.

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

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

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

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

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

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

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

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

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

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

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

New Group Steps Up

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

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

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

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

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

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

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

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

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

Increasing Public Trust

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

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

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

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

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

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

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

Preventable Illnesses Surge

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

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

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

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

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

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

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

In March, a federal judge many of the changes.

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

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

Boigon is sometimes incredulous at everything that has happened.

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

This article is from a partnership that includes聽,听, and 麻豆女优 Health News.

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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 鈥� the psychoactive compound in cannabis 鈥� 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 鈥� such as the 0.08% blood alcohol content limit 鈥� 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 鈥� less than half of the current bill’s $1.2 trillion 鈥� 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.”

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He had rolled his wheelchair to the oven to keep himself warm as he tried to regulate his temperature, she recalled, and was drenched in sweat from an apparent infection.

In that moment, Quette knew that she and her son’s grandmother could no longer meet his medical needs on their own at their Illinois home just outside St. Louis. He had become paralyzed when he was shot in 2023, and, despite their efforts, they struggled to take care of him. But she never imagined that her quick call for help that day would turn into a months-long hospital stay for her son 鈥� even after he was well enough to be discharged.

She said their family had been begging hospitals for a home health aide to help care for his wounds, only to be accused of neglect. “They were like, 鈥榃ell, y’all almost killed him,’” she recalled officials telling her. 麻豆女优 Health News agreed to use only her nickname to protect the safety of her son.

“I had to give up. I just couldn’t take care of him anymore,” Quette said. “It was just a lot on me. It was something that I was not ready for.”

Once his immediate medical needs were addressed, her son didn’t leave the hospital. His grandmother, who was his legal guardian, had died and the teen ultimately became a ward of the state. He continued living inside a St. Louis children’s hospital for what’s commonly called a “social stay.” Also referred to as hospital boarding or delayed discharge, the practice of keeping children in hospitals “beyond medical necessity” has become a persistent problem 鈥� flummoxing officials in Missouri, Illinois, Minnesota, Georgia, and beyond 鈥� when there’s no safe place to care for the child.

Finding homes for foster kids is difficult across the country. They have spent nights in casino hotels in Nevada and offices in Georgia . This problem even has a name: “hoteling.” But add medical needs to the mix, and hospitals become the holding station for some kids.

Many children stuck in this limbo have mental health or behavioral issues, while some have chronic physical conditions or disabilities for which they need technology, equipment, or other assistance.

“It’s definitely a national problem,” said , a pediatrician at Boston Children’s Hospital and the chair of the American Academy of Pediatrics’ . “Every state has different options in terms of where kids can go post-acute care. But in general, there’s many of our kids with medical complexity who just don’t have access to the appropriate home nursing to bring them home safely.”

It’s gotten so bad that Missouri lawmakers have repeatedly to try to significantly reduce the number of hospital boarding days each year and eventually end the practice altogether.

Quette said her son was housed in a private hospital room while he waited for the state to find a place for him elsewhere. Other children spend weeks, months, and, in extreme cases, years in acute care hospitals while grown-ups scramble to find them safe places to go, according to Lynn Rasnick, a nurse and vice president at the Missouri Hospital Association. She said some children sleep on emergency room stretchers. They sit in windowless rooms. They miss school. And they’re exposed to all the trauma that comes through the hospital on any given day.

To keep young boarders safe, some hospitals hire “sitters” for kids with no place to go, while other institutions have passed along chaperoning duties to hospital workers.

But all that comes at a cost beyond the toll it takes on kids and families. When a child no longer needs hospital-level care, insurers don’t have to pay for their stay. Some hospitals eat the cost. Others ask the state for reimbursement if the child who is waiting for placement is in state custody.

According to the Missouri Hospital Association, the state’s Department of Social Services reimbursed $16.3 million to 19 hospitals for 9,943 boarding days last year 鈥� more than $1,600 a night. But association spokesperson Dave Dillon said that’s a substantial undercount of the problem and that hospitals often aren’t reimbursed for housing children.

One study found that boarding a child with a complex medical condition in Minnesota a day in 2017. And a 2023 Minnesota Hospital Association survey of about 100 hospitals of “unnecessary” patient stays for adults and kids at $487 million for 195,000 days of care.

Lin, the Boston-based pediatrician, said a shortage of home healthcare workers forces some families to keep their children in the hospital, even though they’re well enough to go home.

State Medicaid programs face new pressure from federal cuts in congressional Republicans’ One Big Beautiful Bill Act. Medicaid, which provides healthcare coverage for those with low incomes or disabilities, is expected to lose nearly $1 trillion in federal funding by 2034, so some states are already threatening to scale back optional home-care programs.

Quette, a single mom who once worked as a paid caregiver and now works as a custodian, said her family repeatedly asked hospitals for a home health aide but was told her son’s insurance wouldn’t cover it. Her son’s paternal grandmother, who had helped raise him, was in a wheelchair herself at that point. Quette’s son needed his bandages changed regularly, and she had to turn him around in his bed every four hours.

“I had to wake up out of my sleep to rotate him,” Quette said. “And I couldn’t do it. I was oversleeping.”

Parents across the country face similar challenges. Last year, Georgia officials said 500 children had been and turned over to the state’s Division of Family & Children Services due to complex behavioral or psychiatric needs.

In Colorado, a hospital worker emailed a state representative for help after an autistic 13-year-old boy at UCHealth Longs Peak Hospital in Longmont. After his father left him there, officials told hospital workers that it would take months to find a safe place for the boy to go.

Last fiscal year, the Illinois Department of Children and Family Services logged 304 cases of youth in psychiatric hospitals beyond medical necessity, according to an released by the state. About 43% of those cases were among patients ages 13 to 16.

This year, Missouri state Sen. , a Republican, introduced a bill that would require his state to move faster and pay for care when a child is stuck in a hospital. Similar bills died in committee and . This year, Burger’s bill remained stuck in committee when the legislative session ended May 15.

According to a attached to the bill, paying for hospital boarding could cost more than $148 million a year in a state that already to fund its upcoming $50.7 billion budget.

Over 18 months, the Mercy hospital system, one of the largest in Missouri, logged 2,687 boarding days, testified Patty Morrow, a Mercy vice president, in a March hearing on the bill. That included adults who also were stuck without a safe place to go.

“That was never really ever the intended purpose of a hospital,” Morrow told 麻豆女优 Health News. “The current state cannot be the ongoing solution.”

The bill requires the juvenile court system to ensure that children are placed in “an appropriate setting,” which would entail involvement of social workers and other public servants.

Rasnick, with the Missouri Hospital Association, also spelled out the issue during the hearing. “You can’t just discharge a 9-year-old into the street,” she told lawmakers.

Quette’s son is still in state custody but no longer hospitalized. Illinois officials declined to let the teen share his story with 麻豆女优 Health News.

His mother said she is still holding on to his brace, bandages, ointment, and other medical supplies in her home. “That’s all I have,” Quette said. “That’s the stuff I will never give away.”

This piece was supported by a grant from the Association of Health Care Journalists, with funding from The Joyce Foundation.

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“They’re the folks that work at restaurants. They’re the teacher’s aides,” said Starr, a registered nurse who became Open Door’s chief executive more than six years ago. Those patients, he said, are “really the heart and soul of rural America.”

He said if his remote health centers don’t get a share of the billions of dollars Congress earmarked to transform health care in rural America, patients may soon lose services. About 50% of Open Door’s 60,000 patients are on Medicaid, the joint state and federal insurance program that, together with the related Children’s Health Insurance Program, covers with low incomes or disabilities.

When Congress approved the One Big Beautiful Bill Act last summer, it cut nearly $1 trillion from Medicaid over the next decade. Now, Starr hopes the $50 billion Rural Health Transformation Program, which was part of the same bill, will help keep his patients covered.

Yet, small community health care providers, such as Open Door, may find they are sharing the billions with an army of corporate giants before it reaches their patients.

Months after federal leaders announced that all 50 states won first-year awards, ranging from $147 million for New Jersey to $281 million for Texas, state plans reveal that a heavy dose of prescribed spending will go to companies that can increase the use of electronic health records, strengthen cybersecurity, and improve state and health system technology platforms.

And at least four large-scale coalitions of companies are now pitching multipronged services to the states. Many of the companies already work with regional health systems and states through Medicaid contracting or mobile and telehealth operations.

How those services will help improve the health care of rural Americans at places such as Open Door remains an open question.

States Stare Down Reporting Deadlines

Federal regulators were “really interested in seeing digital health investments” when they crafted the five-year rural health program rules last year, said Maya Sandalow, an associate director at the Bipartisan Policy Center, a think tank based in Washington, D.C. She co-authored a recent report on how the 50 states plan to invest in technology, including modernizing health care infrastructure and expanding virtual care options such as telehealth and remote patient monitoring.

“The rural health fund isn’t really designed to directly replace or offset the lost Medicaid funding,” Sandalow said, noting that the federal staffers in charge of the program 鈥� money that could help rural hospitals and clinics pay for patient care 鈥� at 15% of the total funding awarded to a state.

Federal regulators also established tight reporting deadlines, forcing states to move quickly.

States must file progress reports and obligate all first-year funding , according to the Centers for Medicare & Medicaid Services, the federal agency overseeing the program. States could see their awards decreased or terminated at any time if they fail to follow federal requirements, according to the .

As of early April, CMS had not approved or had only partially approved some state budgets, including those of Wyoming, Colorado, and Vermont, according to state officials. CMS spokesperson Catherine Howden, who declined to say which states still needed revised budgets approved, said the agency does not provide “state-by-state updates.”

In Alaska, the budget is approved but the state has not announced when it will release full grant proposals and awards, said Tricia Franklin, program coordinator for Alaska’s rural health transformation.

“Early summer was the target,” Franklin said. But the response from vendors and applicants has been “much greater than expected, so it may take us a little longer.”

Working with consulting companies is an established way for states to “quickly and effectively” meet federal deadlines and roll out grant money, said , national director for population health at the Milbank Memorial Fund, a nonprofit focused on state health policy work.

Upgrading Technology, Modernizing Rural Health

Science Applications International Corp., a Fortune 500 government contractor, pulled together the . SAIC does a variety of technology work such as cybersecurity and engineering support. The alliance also includes Walgreens and Mission Mobile Medical, which turns RVs into primary care clinics. A data analytics company, a telemedicine and software company, and a company that helps place medical graduates in health systems are also part of the coalition.

The SAIC alliance offers “an ecosystem” of companies that can coordinate the work states have promised, said , SAIC’s Rural Health Transformation Program lead and a former chief information officer for the Virginia Department of Health. Each of the companies has representatives focused on the rural program, he said.

A lack of digital infrastructure 鈥� such as electronic health records at different clinics and hospitals that can talk to one another 鈥� has been a consistent barrier for rural medical care teams, said the Bipartisan Policy Center’s Sandalow.

“The funding hasn’t always been there in order for rural areas to create the infrastructure that’s needed to fully adopt remote patient monitoring, telehealth, artificial intelligence in ways that will really be supportive,” Sandalow said. “It takes things like updating infrastructure, changing workflows.”

Sandalow’s found that Maine and Utah are investing in cybersecurity; Indiana, Missouri, and New Mexico plan to modernize their electronic health records; Oklahoma plans to buy hardware and software, subsidize subscriptions, and give technical support to rural providers; and states such as Arizona and South Carolina will use funds to create telehealth hubs or buy remote patient monitoring equipment.

Federal regulators, when creating the rural program’s spending rules, also said no more than 5% of a state’s total funding awarded could be used to replace electronic medical records systems that already meet federal standards. Sandalow said that means states will focus on enhancements and upgrades to their current systems.

Gainwell Technologies, which operates the systems for dozens of state Medicaid programs, is spearheading . Rushil Desai, a Gainwell senior vice president, said states’ detailed spending plans are “changing in real time.”

Maine’s Medicaid plan contracts with Gainwell, and the state’s initial application listed four contracts worth more than $16 million over five years for the company. The state confirmed it has received federal approval for only its first year of spending, which includes a to implement changes to the state’s Medicaid claims system.

James Lomastro, a senior-care advocate in rural Massachusetts with the nonprofit , said he worries that large vendors and health systems will get the state’s transformation dollars.

Clinics, home care agencies, and nursing homes that “actually provide day-to-day support in the community are mostly on the margins” of state discussions about how to spend the money, he said. A spokesperson for Massachusetts’ Executive Office of Health and Human Services, Olivia James, said state officials would “ensure that everyone has a seat at the table” with training, financial incentives, and direct investments.

Arizona’s rural fund budget, which is $167 million for the first year, allocates for medical diagnostic equipment and technology upgrades, including to electronic health records, specifically for rural health care facilities.

But it also for county public health departments, said Pima County Public Health Director Theresa Cullen. The approved budget includes up to $4 million for grants to support community health workers.

“In these rural communities, you need to be present,” Cullen said.

Alina Czekai, director of the CMS rural health transformation office, said her team plans to visit all 50 states. She spoke at the National Rural Health Association’s policy conference in Washington, D.C., in February and told the audience that her team wants “the money to go to rural communities, rural providers, rural patients.” The association’s members include rural hospitals and clinics, which are expected to suffer big losses under the Medicaid cuts.

In California, Open Door’s Starr said he provided input on his state’s initial application, which won $234 million in first-year funding, but he is not clear on what the next steps will be for getting money from the program.

For his patients, Starr said, money is needed for technology upgrades. After all, he said, updated electronic health systems could operate seamlessly and store the documentation needed to keep a patient enrolled in Medicaid.

Updated technology could be exactly what Open Door and other area clinics need to “help keep people covered,” Starr said.

麻豆女优 Health News senior correspondent Phil Galewitz and rural health care correspondent Arielle Zionts contributed to this report.

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McLeod, who lives near Charleston, South Carolina, is still paying off chemotherapy bills that followed her 2017 diagnosis. She also now faces an onslaught of out-of-pocket costs for follow-up monitoring and care, including regular visits to a pulmonologist and allergist.

McLeod, 45, said she had already spent $2,500 in the first two months of the year and owes an additional $1,300 from a January colonoscopy. That’s on top of the $895 monthly premium for a health insurance plan that covers her family of six.

Those costs have led McLeod to ration her other care. Despite feeling intense chest pain since February, for example, she is putting off a CT scan and a visit to a heart specialist.

“You’re forced to pick and choose as to where your priorities really need to be,” said McLeod, director of strategic programs and partnerships at the Cancer Hope Network, a nonprofit that supports cancer patients. Even in that role, she struggles to navigate the financial aftermath of surviving the disease.

The cost of postcancer care often “keeps us hostage,” she said.

McLeod is one of nearly 19 million U.S. cancer survivors, many of whom continue to need prescriptions, doctor visits, and procedures to monitor their condition and manage posttreatment side effects. Of more than 1,200 cancer patients and survivors , about 47% said they had carried medical debt, with nearly half having owed more than $5,000, according to the American Cancer Society Cancer Action Network.

Yet health policy researchers and patient advocates said the experiences of cancer survivors reveal the limits of the Trump administration’s proposals to lower premiums, which may not help patients who accumulate large medical bills year after year. The proposals center on increasing the availability of high-deductible health plans, which have lower monthly payments but require patients to pay thousands of dollars out-of-pocket before coverage kicks in.

In addition, the administration has supported allowing insurers more leeway to sell plans that are not compliant with the Affordable Care Act. Such plans could bar people who have preexisting health conditions, like a cancer diagnosis, and exclude that ACA plans are required to cover.

The administration did not answer a request for comment on how its proposals would affect cancer survivors. But its supporters say, in general, people would have more flexibility to personalize coverage and more options for plans with lower monthly fees.

Michael Cannon, director of health policy studies at the Cato Institute, a libertarian think tank, believes patients would have better control over spending, and the option to choose what kind of care gets covered, if health plans were exempted from the ACA’s regulations. A person could opt for a plan that includes cancer treatment but not maternity care, for example.

History proves insurance coverage is not that simple, especially for people with preexisting conditions, said Jennifer Hoque, an associate policy principal with the American Cancer Society Cancer Action Network. When health plans could “pick and choose” enrollees based on preexisting conditions prior to the ACA, people needing the costliest care often struggled to find coverage, she said.

“They’re not going to choose a cancer survivor,” Hoque said of health insurers.

That was the case for Veronika Panagiotou, who said private insurers refused her coverage back in September 2013 because she had a high body mass index. Two months later, as a 25-year-old uninsured graduate student, she was diagnosed with non-Hodgkin lymphoma. The hospital treated her, she recalled, “and sent me all the bills.”

In January 2014, Panagiotou was able to buy one of the first ACA plans that went into effect. It covered chemotherapy and immunotherapy treatment, imaging, medications, hospital stays, weekly blood draws, a blood transfusion, and emergency room visits.

Now Panagiotou, 37, is cancer-free and works as director of advocacy and programs at Cancer Nation, a nonprofit advocacy group. Even though she is covered through her employer, Panagiotou said treatment-related expenses weigh heavily on her life decisions.

“Every choice I make, I think about cancer,” she said.

Chris Bond, a spokesperson for AHIP, the main health insurance trade association, said its members are working to improve access to coverage. But that can be a challenge when doctors and drugmakers are hiking prices, he said. Health plans are trying to “shield Americans from the full impact of those rising costs,” Bond said.

The Lymphoma Research Foundation has seen a 10% increase in applications to its patient aid fund this year, CEO Meghan Gutierrez said. “This trajectory suggests that financial safety nets, when they exist, are straining,” she said.

Rising prices are affecting everyone, regardless of the kind of health insurance they have, if any, said Brian Blase, president of Paragon Health Institute, a Republican-aligned think tank. “The biggest challenge for cancer patients isn’t the type of coverage,” he said. “It’s the underlying cost of care.”

Blase pointed to President Donald Trump’s as potentially helpful to cancer survivors. The Medicare Drug Price Negotiation Program, established by the Inflation Reduction Act of 2022, required the Department of Health and Human Services to negotiate prices for certain high-cost drugs, to lower prices for the federal health insurance program for people ages 65 and older. Drugs for breast, prostate, and kidney cancers are already on that list, .

Yet Hoque fears efforts to weaken ACA protections and financial support for marketplace plans will give cancer survivors 鈥� who she said tend to “hang on to insurance for dear life” 鈥� fewer options, especially between jobs or during career changes.

Erin Jones, a 31-year-old food policy researcher living in Fort Collins, Colorado, who was diagnosed with Hodgkin lymphoma as a young adult, is now cancer-free but still sees two oncologists, visits a high-risk breast clinic, and gets a breast MRI annually. Jones gets health insurance through the university where she works, and said she recently deferred acceptance to a PhD program partly due to uncertainty over affordable coverage.

“I don’t have the freedom to do the things I want to do as easily,” she said, “because I am constantly worried about health insurance.”

Costs related to surviving cancer, including monitoring for recurrence and treatment of side effects, were expected to reach $246 billion by 2030, up from $183 billion in 2015, according to .

Advancements in both detecting and curing cancer have resulted in a higher percentage of people surviving five years or more after diagnosis, according to the American Cancer Society. The number of survivors is expected to grow to more than 22 million people by 2035, .

Despite these advancements, the cost of treatment can steal the spotlight, said Ezekiel Emanuel, a co-director of the Healthcare Transformation Institute at the University of Pennsylvania and a onetime health policy adviser to former President Barack Obama.

An oncologist, Emanuel said he had observed patients make the difficult decision to delay or skip postcancer care as a result.

“Even when we triumph,” he said, “we don’t seem to be able to have a celebration.”

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But seven months later, findings from five states shared with 麻豆女优 Health News show that the reviews have uncovered little evidence of a widespread problem.

Only U.S. citizens and some lawfully present immigrants are eligible for Medicaid, which covers health care costs for people with low incomes and disabilities, and the closely related Children’s Health Insurance Program. Both programs are administered by states.

Spokespeople from Pennsylvania’s and Colorado’s Medicaid agencies said, as of March, the states had found no one who needed to be terminated from Medicaid. That was after checking a combined 79,000 names.

Texas has reviewed records of more than 28,000 Medicaid enrollees at the Trump administration’s request and terminated coverage for 77 of them, according to Jennifer Ruffcorn, a spokesperson for the Texas Department of Human Services.

Ohio has checked 65,000 Medicaid enrollees, of which 260 people were disenrolled from the program, said Stephanie O’Grady, a spokesperson for the Ohio Department of Medicaid.

In Utah, 42 of the 8,000 enrollees identified by the Trump administration had their Medicaid coverage terminated, said Becky Wickstrom, a spokesperson for the state’s Department of Workforce Services.

In announcing the reviews, Health and Human Services Secretary Robert F. Kennedy Jr. said: “We are tightening oversight of enrollment to safeguard taxpayer dollars and guarantee that these vital programs serve only those who are truly eligible under the law.”

Leonardo Cuello, a research professor at Georgetown University’s Center for Children and Families, said the reviews ordered by the federal Centers for Medicare & Medicaid Services were unneeded because states check immigration status when people sign up.

“It is entirely predictable that all of these burdensome reviews that the federal government is forcing upon states would yield no pay dirt,” Cuello said. “The states had already done the reviews once, and CMS was just making them reverify the same information they had already checked. Making states go through the same bureaucratic process twice is incredibly wasteful and inefficient.”

CMS spokesperson Chris Krepich said in a statement to 麻豆女优 Health News that the ongoing checks are verifying eligibility “for certain enrollees whose status could not be confirmed through federal data sources.”

“CMS provides states with regular reports for follow-up review, and states are responsible for independently verifying eligibility and taking appropriate action consistent with federal requirements,” he said.

But the findings shared with 麻豆女优 Health News also suggest that many of the enrollees whose eligibility the Trump administration said it could not confirm are indeed U.S. citizens. O’Grady said Ohio found that, of the 65,000 names referred by the federal government, the state already had information on 53,000 confirming them as citizens and an additional 11,000 showing appropriate immigration status for Medicaid.

Caseworkers then worked on the remaining 1,000 names to review their information or reach out for more details, she said.

CMS did not answer questions about the findings from the states sampled by 麻豆女优 Health News or provide information about responses it received from all 50 states and the District of Columbia, which were instructed to perform verification checks.

The agency also did not respond to a question about whether it’s forwarding the names of those whose Medicaid coverage was terminated to federal immigration officials.

In June, advisers to Kennedy ordered CMS to share information about Medicaid enrollees with the Department of Homeland Security, prompting a lawsuit by some states alarmed that the administration would use the information for its deportation campaign against residents living in the U.S. without authorization.

A federal judge that Immigration and Customs Enforcement workers could access information only about people in the country unlawfully in the Medicaid databases of the states that sued.

CMS continues to send states lists of names at least every few months, though state officials say the numbers have declined since the first batch last summer.

People without legal status are ineligible for federally funded health coverage, including Medicaid, Medicare, and plans through the Affordable Care Act marketplaces. Medicaid does reimburse hospitals for providing emergency care to people without legal status if they meet income and other program requirements.

Seven states and the District of Columbia provide health coverage regardless of immigration status, funding the programs with their own money.

In March 2025, CMS began financial reviews of those programs. “CMS has identified over $1.8 billion in federal funds that are being recouped through voluntary returns and deferrals of future federal Medicaid payments,” Krepich said. He did not answer how much has been collected so far or from which states.

Medicaid’s overall spending topped $900 billion in fiscal year 2024.

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It’s one of the many parts of the 25-bed rural hospital that need updating, former CEO Ron Wiens said.

He said the hospital, an essential service in its namesake town of nearly 800 residents in the state’s sprawling north-central high plains, needs at least $1 million for deferred maintenance, including a failing HVAC system. But the facility has struggled to make payroll each month and can’t afford to make all the fixes, Wiens said.

Built by farmers and ranchers in 1965, Big Sandy Medical Center began with nine beds. Today, a similar community effort 鈥� donations and grants to plug financial holes each year 鈥� keeps it afloat.

Wiens, who recently left his position at the hospital, said he wishes Big Sandy could get funding from Montana’s share of the $50 billion federal Rural Health Transformation Program to renovate the hospital and direct payments to help secure its future. The state received more than $233 million in its first-year award.

But the hospital may not get the kind of help he sought.

That’s because the five-year program focuses on new, creative ways to improve access to rural health care, not on directly funding services and renovations. And Montana is one of at least 10 states whose leaders say projects launched under the federal program could lead rural hospitals to cut services so they can continue to afford to offer emergency and other essential care.

Congressional Republicans created the fund as a last-minute sweetener to their One Big Beautiful Bill Act, signed into law last summer. The funding was intended to offset disproportionate fallout anticipated in rural communities from the law, which is expected to slash Medicaid spending .

includes programs to make it easier for rural residents to get medical care and live a healthy lifestyle. For example, it says funding can be used to start community gardens, train paramedics to make home visits, open school-based clinics, or bring mobile clinics to rural areas.

rural Montana hospitals can receive payments for implementing recommendations, “including right-sizing select inpatient services” to match demand. In some cases, it says, right-sizing might mean “downsizing.” The state says hospitals will have input and recommendations will be specific to each facility.

“That’s what has all the hospitals on pins and needles, words like restructuring, reducing inpatient beds. Everybody is going, 鈥榃hat is this going to look like?’” Wiens said.

The Montana Department of Public Health and Human Services declined to answer questions about how it will carry out its right-sizing efforts.

A Lifeline of Care

Big Sandy cattle rancher Shane Chauvet doesn’t want any services cut.

He credits Big Sandy Medical Center with saving his life after a flying piece of metal nearly cut off his arm during a windstorm a few years back.

“I looked over, saw it coming, and whack!” Chauvet recalled.

His wife drove him to the hospital, where they frantically pounded on the ER door while Chauvet’s blood pooled on the ground.

Because of the storm, staffers worked on Chauvet with no power and no ability to summon a helicopter. He was then taken by ambulance 80 miles through intense rain and hail to a larger hospital.

Chauvet understands the state’s plan doesn’t call for eliminating emergency care, but he worries that reducing other services would set off a downward spiral for the hospital and his town.

In Oklahoma, realigning clinical services could mean “shutting down service lines,” to the federal program. And in Wyoming, any facility that receives funding must agree to “reduce unprofitable, duplicative or nonessential service lines,” .

Monique McBride, business operations administrator at the Wyoming Department of Health, said the department interprets right-sizing as helping rural hospitals provide essential services 鈥� such as emergency departments, ambulance services, and labor and delivery units 鈥� while maintaining long-term, financial stability.

“This might involve limiting some elective procedures that could be done at lower cost in higher-volume facilities. The main distinction here is time-sensitive emergencies vs. 鈥榮hoppable’ services,” she said.

A New Lease on Life?

Seven of the 10 states 鈥� Nebraska, North Dakota, Tennessee, Kansas, Nevada, South Carolina, and Washington 鈥� where rural hospital service cuts are on the table say they’ll help pay for hospitals to convert to Rural Emergency Hospitals. The recently created federal designation requires hospitals to halt inpatient services and offers enhanced payments to help them maintain emergency and outpatient care.

At least 15 additional states wrote that they’ll use the federal funding to right-size, evaluate, or adjust services 鈥� which could mean adding or taking away services, or transitioning them to a telehealth or outpatient setting.

Brock Slabach, chief operations officer of the National Rural Health Association, said, “There’s a proper concern from rural hospital administrators that this funding is not going to where it was intended.”

He said cutting services that lose money could backfire in the long run. For example, he said, halting labor and delivery care might drive more people out of small towns, further reducing hospitals’ patient numbers and revenue.

The type of hospital services that states will assess matters, said Tony Shih, a senior adviser at the Commonwealth Fund, a nonprofit focused on making health care more equitable.

“If the end result is that high-margin services are taken away from local hospitals with nothing given back in return, it can be financially harmful,” he said.

Shih noted that states’ plans to add more outpatient care could prove beneficial for patients. It’ll take time to know which states help stabilize rural hospitals, he said.

Rural hospital leaders say they know which changes would keep their facilities open and that states shouldn’t suggest or mandate service cuts and other changes on their behalf.

Josh Hannes, who oversees rural health policy at the Colorado Hospital Association, said “top-down” directives won’t work.

He said the association’s members believe they can find efficiencies and are eager to collaborate. But “a state agency shouldn’t be making those determinations,” he said.

Hannes said members are worried Colorado’s plan to classify rural health facilities as a “hub, spoke, or telehealth node” will compel service reductions. The classification will help determine “which services are sustainable locally and which are best provided regionally or through telehealth,” .

Spokespeople for the Colorado and Oklahoma health departments said no facility will be forced to end services. But Oklahoma spokesperson Rachel Klein said some facilities might choose to do so as part of a broader effort to make sure they’re meeting community needs while remaining financially stable.

“A hospital might shift certain services to a nearby regional provider with higher patient volume and specialized staff while expanding other local services,” such as primary, outpatient, or community-based care, she said.

Wiens and Darrell Messersmith, CEO of Dahl Memorial Hospital in the southeastern Montana town of Ekalaka, said they worry the only way hospitals will get their share of funding is to cut services or become Rural Emergency Hospitals that don’t offer inpatient services.

“I would hate to see things shift toward a pack-and-ship facility,” Messersmith said. “Right now, we function quite well as an inpatient facility.”

Not all Montana health leaders are worried.

Ed Buttrey, president and CEO of the Montana Hospital Association, said he thinks his state’s plan could help rural hospitals become financially sustainable and survive Medicaid cuts. Buttrey is also a Republican state lawmaker.

Chauvet, the Big Sandy rancher, said his perspective on whether remote towns like his should have a hospital is forever changed because of his accident.

“I always would say, 鈥極h, they’re nice to have,’ but now I look at the hospital and say, 鈥楾hat’s essential to our community,’” he said.

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