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 Ñî¹óåú´«Ã½Ò•îl Health News and The Associated Press found. Detainees say they didn’t get medications on time — or at all — for conditions including high blood pressure, diabetes, depression, epilepsy, Parkinson’s, and HIV. Requests for help went unanswered for weeks. Blood sugars rose. Infections festered. Cancers remained untreated. Detainees collapsed and had seizures.

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

Ñî¹óåú´«Ã½Ò•îl Health News and AP analyzed thousands of court cases filed since Trump’s second inauguration that use a legal route known as habeas corpus to argue people are being held illegally by ICE. The records offer a rare window into how those detained say, often under penalty of perjury, ICE is handling their medical needs. Reporters also interviewed more than 50 detainees, family members, and lawyers.

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

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

Ñî¹óåú´«Ã½Ò•îl Health News and AP asked DHS to respond to the findings six days before publication, but it did not provide comment. The department’s acting chief medical officer, Sean Conley, has “it is both policy and longstanding practice for aliens to receive timely and appropriate medical care from the moment they enter ICE custody” and that the agency recruits healthcare professionals to maintain high standards. “This is better, more responsive healthcare than many aliens have ever received in their entire lives,” he has said.

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

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

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

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

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

‘Brazen Indifference to Really Obvious Problems’

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

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

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

Like other detainees interviewed, he spoke on the condition of anonymity; they said they fear for their safety, for the safety of their families, or that speaking out would jeopardize their immigration cases. The AP and Ñî¹óåú´«Ã½Ò•îl Health News are not naming anyone identified in court documents without their consent.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Surge in Cases

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

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

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

The more than 300 medical neglect claims found in this investigation represent a fraction of the problem. The details of habeas corpus cases are often hidden due to a federal rule barring the public from viewing such documents online. Ñî¹óåú´«Ã½Ò•îl 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 — 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

Ñî¹óåú´«Ã½Ò•îl 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 — 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.

Ñî¹óåú´«Ã½Ò•îl 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 Ñî¹óåú´«Ã½Ò•îl Health News correspondent Kate Wells contributed to this report.

This report is a collaboration between The Associated Press and Ñî¹óåú´«Ã½Ò•îl Health News.

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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 Ñî¹óåú´«Ã½Ò•îl Health 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.

Ñî¹óåú´«Ã½Ò•îl Health News reporter Rachel Spears contributed to this article.

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A from 42 states and the District of Columbia offers insights into key policy decisions state officials face as the Jan. 1, 2027, deadline for implementing the work requirement nears. Lingering questions include which diseases and illnesses will qualify Medicaid beneficiaries for exemptions and how to automate compliance verification. 

Federal guidance is not expected to be released until June. But some states are moving forward with their own definitions of “medical frailty,” which under congressional Republicans’ One Big Beautiful Bill Act will allow Medicaid enrollees to escape the requirement.

The law, President Donald Trump’s signature domestic achievement, revamps Medicaid in more than 40 states that, along with Washington, D.C., fully or partially expanded the program for low-income people to cover adults without children who don’t get insurance through a job. While most adult Medicaid beneficiaries already work or are disabled, caregivers for other people, or in school, many Republicans contend that people enrolled in the program who don’t work sap resources that ought to support low-income children, pregnant women, and disabled people.

gained Medicaid coverage from the expansion, created by the Affordable Care Act — a law that most Republicans still oppose.

The new work rules require that a person be a student at least part-time or work or participate in other qualifying activities, such as community service, for at least 80 hours each month. The requirement could potentially reshape who is eligible for Medicaid and applies to people who are already enrolled.

The Congressional Budget Office will reduce federal Medicaid spending by about $326 billion over 10 years. The agency also estimates that 4.8 million more people will be uninsured in 2034 because of the work requirement.

 “A lot of states are working on a super-condensed timeline,” said Amaya Diana, a policy analyst at KFF who worked on the survey. They are “still making these big decisions with less than a year before implementation.”

KFF is a health information nonprofit that includes Ñî¹óåú´«Ã½Ò•îl Health News.

The law permits short exemptions from work requirements for enrollees experiencing certain hardships — natural disasters, residing in a county with a high unemployment rate, admission to a hospital or nursing home, or having to travel for an extended period to obtain medical care.

While 28 states and Washington, D.C., will offer hardship exemptions, three of those states won’t adopt all four exemptions allowed by the law and two — Iowa and Indiana — don’t plan to adopt any.

People can also be exempted from the work requirements if they are “medically frail.” But the federal government has not told states how to define that term or how to determine whether an enrollee falls into the category.

The survey showed that 21 states, as of March, had not defined medical frailty. Nebraska, which is implementing its work requirement May 1, recently issued a list of thousands of health conditions that could qualify enrollees as “frail” and exempt them from working.

Some states plan to allow patients to self-attest to medical frailty, while others will require confirmation by a medical professional. The most common way of verifying medical frailty, which will be used in just over 30 states, is by examining Medicaid claims data.

Mehmet Oz, administrator for the federal Centers for Medicare & Medicaid Services, told Ñî¹óåú´«Ã½Ò•îl Health News in an interview this week that “we don’t like self-attesting” and that “documentation is critical.”

Many beneficiaries and their advocates have expressed concerns about losing coverage for administrative reasons. When Arkansas briefly implemented Medicaid work rules, for instance, most lost coverage not because they did not meet the requirements but for failing to correctly submit paperwork in time.

Six states plan to use AI to assist with the work requirement implementation in some way, such as for document processing or comparing beneficiary data from different sources, KFF found. Two states, Maryland and New Mexico, plan to use AI to analyze claims data.

Three states — Arkansas, Missouri, and Oklahoma — plan to use AI to interact directly with people on Medicaid and assist them with identifying and uploading verification documents and data.

Adults on Medicaid will have to reverify that they’re working, or that they’re exempt from the requirement, at least every six months. Some states plan to check quarterly.

When possible, states must use available data sources to verify exemptions or compliance with work requirements.

For example, data from the National Student Clearinghouse will be used by about 10 states to verify school attendance. Some states also plan to tap sources including the Department of Veterans Affairs, AmeriCorps, and service commissions.

But more than half of states told KFF’s researchers that they have insufficient time to add new data sources and cited ongoing costs as a challenge.

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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 — money that could help rural hospitals and clinics pay for patient care — 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 — such as electronic health records at different clinics and hospitals that can talk to one another — 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.

Ñî¹óåú´«Ã½Ò•îl Health News senior correspondent Phil Galewitz and rural health care correspondent Arielle Zionts contributed to this report.

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“I feel like I’m suffocating inside this shelter, trapped with no way out,” Carlos’ son said, according to one of the teens’ attorneys, when asked to describe how he felt after months at the Houston-area facility. “Every day, the same routine. Every day, feeling stuck. It makes me feel hopeless and terrified.”

During daily video calls, Carlos, who had temporary protected status, urged the siblings to be patient, to trust the process. Federal officials had vetted Carlos before he could be granted custody and told him his case was complete. He believed he would soon be back with his children, who, like him, had sought refuge from political violence in Venezuela.  

An immigration officer called Carlos on a Friday and asked him to attend a meeting at an ICE office the following Monday to discuss reunification with his children. Once Carlos arrived, officers tried to force him to sign documents he said he didn’t understand. When he refused, they stripped off his clothes, seized his ID and belongings, and chained him by the neck, waist, and legs.

“They tricked me,” Carlos said in a phone call from an immigration detention center in El Paso, Texas, where he was held for several months. “They used my children to grab me,” he said.  

In reporting on the family’s story, Ñî¹óåú´«Ã½Ò•îl Health News reviewed court documents, spoke with the family’s immigration attorneys, interviewed Carlos, and reviewed statements from his children, translated from Spanish. Carlos is a pseudonym, being used at the request of attorneys concerned that speaking out could jeopardize Carlos’ immigration case or further delay his reunion with his family.

Using Children to Arrest Parents

Since 2003, the Department of Health and Human Services’ Office of Refugee Resettlement has cared for immigrant children under 18 who arrive in the country without their parents, often fleeing violence, abuse, or trafficking. The office, which in February had more than 2,300 children in shelters or with foster families across the country, is supposed to promptly release them to vetted caregivers, typically parents or other family members already living in the country.

Congress placed this responsibility with the health agency over 20 years ago to prioritize the well-being of unaccompanied children and separate their care from immigration enforcement priorities.

Now the second Trump administration is using migrant children held by the resettlement office to lure their parents, such as Carlos, whether or not they have a criminal record. A Ñî¹óåú´«Ã½Ò•îl Health News investigation found the resettlement office, , coordinates with the Department of Homeland Security to arrest people seeking custody of migrant children.

Arrest documents show Homeland Security Investigations, the arm of the agency that normally focuses on organized criminals and traffickers, will interview parents or other caregivers then arrest them if they are in the country illegally. Before Donald Trump returned to the White House, the resettlement office prohibited data sharing and collaboration with immigration enforcement, and it did not deny caregivers custody of children solely because of their immigration status. Those last year.

It’s unclear exactly how many caregivers have been baited into arrest. LAist indicating more than 100 have been arrested while trying to get their kids out of detention, but Ñî¹óåú´«Ã½Ò•îl Health News could not independently verify that number with federal agencies.

Since February, the Department of Health and Human Services, Department of Homeland Security, and Justice Department have not responded to questions about caregiver arrests. Prior to leaving DHS last month, Assistant Secretary Tricia McLaughlin said the administration protects children from being released to people who shouldn’t care for them. Andrew Nixon, an HHS spokesperson, referred questions related to immigration enforcement to DHS.

At the same time, the resettlement office has that make it harder for caregivers to gain custody of unaccompanied children. These include narrowing the range of accepted documents, requiring fingerprint-based background checks for every adult in the home and backup caregivers, and requiring in-person appointments to verify identification documents, sometimes with ICE agents present. The requirements keep “children safe from traffickers and other bad, dangerous people,” Nixon said.

As of January, the agency had detained at least 300 children already placed with vetted sponsors and asked their caregivers to reapply, according to the National Center for Youth Law and the Democracy Forward Foundation. The advocacy groups filed calling these actions “a quieter, new form of family separation.” 

Reverse Separation

Dulce, a Guatemalan mother in Virginia, said her 8-year-old son was sent to a government shelter after he was detained during a traffic stop last summer while visiting family members in a different state.

At first, Dulce expected to get her son back within days — she had passed the government’s sponsorship requirements in 2024 and was reunited with him three weeks after he first crossed the border. But resettlement agency officials asked her to repeat the entire process and resubmit documents, Dulce said. It took eight months to get him back.

Dulce is a pseudonym being used at her request because she fears speaking out could get her deported.

At one point, Dulce was told to attend an interview at an ICE office to show her identification as part of the process of reuniting with her son. She refused out of fear that she too might be detained, because she doesn’t have legal status. She believes ICE agents visited her home at one point.

“I stopped going home,” Dulce said. “I lived with some of my friends for days.”

Even though she lived just 45 minutes away, Dulce was allowed to visit her son only twice a month.

Until recently, most unaccompanied children landed in government custody after being detained at the border. But border crossings started to fall in 2024, and the number of people coming to the U.S. has dropped precipitously in President Trump’s second term.

Now, hundreds of kids have been taken to government shelters after being swept up inside the country, often during immigration raids or traffic stops, according to the advocates’ lawsuit. Many were already living with relatives, including guardians already vetted by the resettlement agency.

Releases have grinded nearly to a halt. According to the resettlement office, children in its custody stayed in government shelters or foster care for an average of one month in 2024. As of February, that had jumped to more than half a year.

When children do get released, it’s often only after their attorneys file a lawsuit in federal court challenging their detention as unconstitutional.

Authorities released Dulce’s son to her in February after the boy’s attorneys filed such a petition. Dulce said she’s relieved to have him back but still anxious that ICE could show up at their house.

Immigrants at Risk

During Trump’s first term, his administration was criticized for of children who had been released from custody. President Joe Biden was blamed for how his administration processed a surge of unaccompanied children that peaked in 2021 with about 22,000 in the resettlement office’s custody. Though most children were placed with legitimate sponsors, some were placed with people who hadn’t cleared , putting them at risk of .

The Trump administration says it is checking on those , and the Justice Department has prosecuted . On March 1, Homeland Security Secretary Kristi Noem, who is set to leave her role at the , touted a , including the resettlement office, that DHS said had tracked down 145,000 unaccompanied children who had been placed with caregivers during Biden’s term.

Yet internal HHS reports about that initiative obtained by Ñî¹óåú´«Ã½Ò•îl Health News show that nearly 11,800 of those migrant children and nearly 500 of their caregivers were arrested as of Jan. 29. Only 125 of those migrant children and 55 of those caregivers were arrested for alleged criminal activity, suggesting the majority were for immigration violations.

HHS referred questions about the figures in the reports to DHS, which did not respond to requests for comment about the data. However, Michelle Brané, who was a DHS official in the Biden administration, said the figures show that most of the arrests were to detain and deport migrants. Previously, the administration targeted parents and caregivers who had paid for children to cross the border, trying to levy smuggling charges against them.

“They have really dropped that pretense in a lot of ways, and they are going for anyone openly,” Brané said. “These numbers clearly reflect that this is not about public safety or about safety of the children.”

Case on Hold

Carlos left Venezuela in 2022 because of death threats and, like thousands of others fleeing that country, was granted what’s called temporary protected status under the Biden administration. That protection for most Venezuelans by the Trump administration.

In January 2025, days before Trump was sworn in for his second term, Carlos’ children crossed the border from Mexico to the U.S., turned themselves over to border authorities, and were immediately placed in the resettlement agency’s custody. Carlos spent months submitting paperwork to reunite with them. He said he’s their only parent, because their mother left when they were toddlers.  

Officials visited his home twice and determined he was fit to care for them, according to court documents petitioning for his release from detention. He passed DNA testing, proving he’s the biological father, one of his attorneys said. His arrest documents show he has “no criminal history.” In July, Carlos was told his reunification case was complete and being sent for approval. But then, with little explanation, the case was put on hold.

Before his arrest by ICE, Carlos said, he drove 14 hours each way from his home to visit his children. Once there, he could see them for only one hour. When he was in detention, he said, he spoke to them about every two weeks in quick, monitored phone calls.

He’s trying to stay hopeful, but it’s hard.

According to documents completed by ICE officers during his arrest and submitted in his court case, Carlos was arrested under an initiative called Operation Guardian Trace, which requires immigration officers to detain potential caregivers if they are in the country without legal authorization and recommend that they be deported.

“This operation is designed to force parents to make an impossible choice between reuniting with their children and seeking safety,” said one of Carlos’ attorneys, Chiqui Sanchez Kennedy of the Galveston-Houston Immigrant Representation Project, a nonprofit that helps low-income immigrants.

‘I’m Going to Wait’

In March, a federal judge said officials had unlawfully detained Carlos and he was released on bond.

But his children still face an uncertain future for now. Government shelters often lack sufficient resources, , and social workers say lengthy stays in these facilities can result in additional trauma.

“Not only is it bad, full stop, but the longer you’re there, the worse it gets,” said Jonathan Beier, associate director of research and evaluation for the Acacia Center for Justice’s Unaccompanied Children Program, which coordinates legal services for unaccompanied minors.

Carlos’ children could also be sent back to the country they fled. Because of his detention, Carlos will have to redo much of the process to reunite with them, according to an attorney for the children, Alexa Sendukas, also with the Galveston-Houston Immigrant Representation Project.

In statements shared through Sendukas, Carlos’ daughter said she no longer wants to be around others and spends most of the time in her room. His son, now 15, described having panic attacks and feeling that he’s missing out on life, whether it’s the opportunities he longs for — to learn English, to study science — or watching basketball with his family.

“I remember when I first arrived at this shelter, I was so hopeful and had faith that I would be reunited with my dad soon,” he said.

Carlos’ daughter spent the day crying in bed when the siblings learned their father had been detained. For days, they didn’t know where he was. Now, they fear the only way out is through adoption or foster care.

“I am afraid,” she said. “I’m going to wait for my dad forever.”

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Raven’s case reveals a little-known gap in the U.S. donation system: There is no clear, nationally binding way to opt out — or to ensure a later “no” overrides an earlier “yes” in a different state.

This gap, along with a range of other issues related to the organ procurement system, has become a point of bipartisan congressional concern. Late last year, the House Ways and Means subcommittee on oversight examining what members described as shortcomings, including alleged consent failures.

The panel’s scrutiny of organ procurement organizations, or OPOs, and their consent practices is a first step toward a more meaningful accountability plan that could help maintain trust across the system, according to some committee staff members.

The trust in our organ procurement and transplant system “has been eroded,” said Rep. Terri Sewell of Alabama, the panel’s senior Democrat, calling for stronger transparency and oversight to rebuild public confidence.

“Respect for autonomy — our ability to make our own decisions (self-determination) — allows for both ‘yes’ and ‘no’ decisions and for changing one’s mind,” Margaret McLean, a bioethicist at Santa Clara University, said in an email.

“Medical decision-making is not well served in a context of ambiguity,” she said.

And if a donor revokes consent, she added, “revocation by that person should carry the same ethical and procedural weight as the initial authorization, perhaps more.”

Raven Kinser Changed Her Mind

Raven was 25 when she died. Her parents, Jeff and Jaime Kinser, were at home in Michigan when they received the phone call that shattered their world. They drove through the night to the Newport News hospital, where they learned Raven’s disposition had been referred to LifeNet Health, the region’s federally designated OPO. LifeNet a failing OPO by the Centers for Medicare & Medicaid Services, meaning it doesn’t meet the government’s standards for how well it finds donors and recovers usable organs for transplant compared with other organizations.

Under federal law, hospitals are required to refer deaths and imminent deaths to OPOs, which take responsibility for donation-related decisions and discussions.

OPOs occupy a hybrid position in the health care system, as private nonprofit entities that hold exclusive, federally authorized contracts to recover organs within defined regions. They are regulated by CMS and overseen by the Health Resources and Services Administration, but that oversight occurs primarily through certification standards, performance metrics, and periodic audits rather than routine public disclosure requirements. With donor registries largely managed at the state level and no unified federal reporting requirement for removals, comprehensive national data on revocations is elusive.

OPOs are meant to separate bedside care from organ procurement decisions — to help prevent conflicts of interest and preserve the trust that decisions about life-sustaining treatment are made solely in the dying patient’s interest. But the , leaving families unsure who is in control if and when conflicts arise.

The Kinsers, for instance, felt their daughter would not have wanted to go through the donation process, but, at the time, had no evidence. Jaime remembers telling her husband that Raven would have been mad at them for letting it happen. In an effort to stop it, Jaime inquired about whether she would be asked to sign a consent form. But a LifeNet staff member told her that wasn’t an option because donation was Raven’s “living will,” Jaime said. Meanwhile, Raven’s parents said, her personal effects, including her Virginia driver’s license, which bore no donor designation, had not yet been turned over to the family, leaving them no meaningful way to challenge LifeNet’s determination in real time.

Jaime struggled with this outcome, even mentioning in Raven’s obituary that she was an organ donor. “How would you try to make peace with something that you felt was so wrong but had no proof?” Jaime said.

Two months passed before the Kinsers gained possession of the license, which, as they had expected, showed that Raven had not opted to be an organ donor.

According to the Kinsers, LifeNet staff told them that Raven’s status as a registered donor was established by her designation on her older Michigan license.

An emailed statement attributed to Douglas Wilson, LifeNet executive vice president, said the OPO follows federal law on organ donation, the , and queries applicable state donor registries, relying on time stamps and governing law to determine the , legally valid expression of intent. Under that framework, a prior donor authorization remains enforceable unless a valid revocation is recorded in the regional OPO’s donor registry.

Because of privacy laws, Wilson said, LifeNet could not comment on the specifics of any individual case.

Raven Kinser’s choice not to be a donor when she applied for a Virginia license in July 2024 was not reflected in the registry LifeNet consulted, according to her parents, who said that is what the organization told them. According to Lara Malbon, executive director of Donate Life Virginia, which manages the state’s organ donor registry, if someone changes their donor status while completing a Virginia driver’s license or ID transaction, “that information is sent to our registry, and the registry is updated daily to reflect those changes.” Malbon also said Virginia’s registry includes only people who have “affirmatively said ‘yes’ to becoming an organ, eye, and tissue donor, and it retains records solely for those who have made that decision.”

The Kinsers said they were never told why Raven’s Virginia DMV record was insufficient, or how an older yes from Michigan could outweigh a newer no in Virginia.

In December, the Kinsers filed a complaint with the Health Resources and Services Administration, urging federal regulators to investigate LifeNet’s actions and require OPOs to provide families with documented proof of the donor’s current status at the time of referral. They also called for OPOs, which operate as federally designated regional monopolies but are structured as private nonprofits, to be made subject to public records laws.

When Opting Out Doesn’t Stick

Such confusion is not unique to the Kinser family. It is a consequence of the organ donation consent process in the United States.

“I have also wondered that: why there’s not just one” registry for organ donation, Jaime said. If you go to get a firearm, you have one federal registry, she said.

Here’s how the system works: Americans typically register their organ donation intentions when they apply for driver’s licenses through state DMVs, and that decision remains governed largely by state law. That has led to 50 different sets of rules and very little federal regulation of what has become an in the U.S.

In some states, a donor checkbox is a binding legal document. In other states, the same choice may have different rules about when it takes effect, what it covers, and how it can be revoked.

Those differences can be big. State rules determine whether a person’s “gift” is limited to transplantation or also includes research and education. They determine whether the donation authorization includes tissue. And they can determine what counts as a valid revocation and when it is legally recognized.

Because of the system’s fragmentation, though, signals can cross when someone changes their mind, like Raven; it’s not always reflected from one state system to another.

Under state versions of the Uniform Anatomical Gift Act, a donor’s most recent legally valid expression of intent is meant to control.

“Personal autonomy is paramount to everything,” said Adam Schiavi, a neurointensivist who studies end-of-life decision-making. “If I say I want to be a donor, or if I say I don’t want to be a donor, that has to take precedence over everything else.”

But states differ in how revocation must be recorded and which registry is considered authoritative if someone has lived in more than one state. Those inconsistencies can create uncertainty when records conflict across jurisdictions.

“It has to be the most recent expression, not the most recent yes,” Schiavi said.

In Michigan, a change to someone’s donor status is reflected immediately in the secretary of state’s system, but only affirmative “yes” registrations appear in the registry. Removal information remains in internal motor vehicle records. In Virginia, the state registry includes only those who have affirmatively said “yes,” retaining records solely of donors, creating potential gaps if someone believes a DMV change alone is sufficient.

Elsewhere, processes and volumes differ sharply. New Mexico updates driver records in real time but does not transmit status changes to its donor registry. Instead, donor services receive restricted search access. The state logged nearly 15,000 removals in late 2021 and almost 30,000 in 2022. Florida, which maintains formal removal records through weekly DMV data files, reported 356,161 removals in 2020, more than 1.5 million in 2023, and over 1.2 million in 2025. Kentucky processed 847,371 donor registrations from 2020 to 2025, but only 16,043 icon removals, with registry withdrawal handled separately. In 2025, more than 570,000 Texans opted into the registry, while over 31,000 individuals requested removal.

According to a federal official who asked not to be identified for fear of professional repercussions, OPOs have been highly effective at lobbying states to broaden the definition of consent and authorization — shaping how those terms are applied, whether those statuses must be renewed, and how easy or difficult it is for someone to opt out.

In subsequent correspondence with federal officials, the Kinsers have urged reforms to prevent OPOs from relying on older registry entries when a more recent state DMV record exists, and they have called for criminal penalties in cases in which consent is knowingly misrepresented. Federal regulators have not indicated whether such proposals are under consideration.

Congress Takes a Closer Look

Ethicists have long cautioned that consent must be more than a checkbox and must remain grounded in respect for the donor-patient. In an October on organ transplantation, the American College of Physicians emphasized that clinicians’ primary duty is to the patient in their care, and that maintaining trust requires transparency and safeguards to prevent conflicts of interest from blurring that “bright line.”

Advocates say those steps leave unresolved the core problem raised by the Kinser family: the lack of a clear, legally binding way for people to say “no” and for that decision to follow them across state lines.

The said it “supports strengthening donor registries and enhancing registry interoperability to ensure that an individual’s documented donation decision is honored.” But OPOs have also argued that current policies protect donation as a legally enforceable gift and prevent families from overriding a loved one’s “yes” in the midst of grief. They argue that stronger, more durable consent helps reduce missed donations and saves lives.

Congress and federal regulators are considering changes to the nation’s organ donation system, including how consent is recorded and what should happen when a donor changes their mind.

Sen. Ron Wyden (D-Ore.) last year to create new federal standards for patient safety, transparency, and oversight of organ transplants, including a formal authorization for hospital or OPO staff to pause harvesting if there is any “clinical sign of life.”

HHS press secretary Emily Hilliard said the agency is “committed to holding organ procurement organizations accountable” and to “restoring integrity and transparency” to organ donation policy, calling reforms essential to informed consent and protecting donor rights. CMS issued related March 11, but it does not address the problems highlighted by the Kinsers’ case.

Critics of the organ transplant system say it is difficult for families to obtain documentation or independently verify how consent determinations were made in disputed cases.

HRSA has launched a sweeping modernization of the Organ Procurement and Transplantation Network, the national system that oversees organ allocation and transplant policy. Federal officials have described the overhaul as the most significant restructuring of the transplant system in decades, aimed at breaking up a long-standing contractor monopoly, strengthening patient safety oversight, and replacing aging technology infrastructure.

Central to that effort is modernizing the OPTN’s data systems: improving interoperability, audit trails, and transparency in how decisions are documented and reviewed. A more modern federal data architecture could make it easier to trace which registry was queried, what time stamp controlled, and how a consent determination was reached in disputed donations that span multiple states. But the modernization effort would not change the underlying state-by-state legal framework for donor authorization and what counts as a valid “no.”

Meanwhile, Donate Life America, a national nonprofit that supports state donor registries, also runs the , a central database that allows people to sign up as organ donors directly. Unlike many DMV systems, the national registry lets people log in at any time to view, update, or remove their registration and print proof of their decision. The group is also starting a project to let participating states send registrations directly into the national system, creating one place to track donor sign-ups and removals across state lines.

Each of the proposals comes with trade-offs, and both advocates and OPOs have raised concerns about how they would work in practice.

“Just doing a dump truck dump of information is not going to do much unless you really apply it through checking and auditing,” said Arthur Caplan, a professor of bioethics at New York University’s Grossman School of Medicine. “It could be like the IRS. They don’t have to audit everybody. Just do a spot audit once in a while.”

The Kinsers aren’t opposed to organ donation itself. They celebrated Raven’s donation in her obituary, and in their complaint to federal regulators, they wrote, “We are NOT anti-organ donation, and we will never take away the gift of life our oldest daughter gave to others. However, that was not LifeNet’s choice to make.”

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Jamie Estrada of Albuquerque, New Mexico, twice received injections of lidocaine in his upper spine to test if a permanent nerve ablation would treat his chronic neck pain. His pain vanished — until the numbing agent wore off about six hours later. The real zinger: His insurer was billed $28,000 for each 10-minute procedure.

Mark McCullick of Longmont, Colorado, was sent for a whole-body PET scan to find out whether his prostate cancer was back. The two-hour scan showed no evidence of cancer, but the $77,000 bill sent to the company that administered his insurance alarmed him.

Medical inflation has general inflation for years, with bills for many brief, routine procedures reaching tens of thousands of dollars.

These cases highlight the questions that haunt the American health system and the patients caught in its grip: What is a reasonable price for any health care visit or procedure, and how is it determined? How hard do insurers, the purported stewards of the patient’s hard-earned health dollars, fight to lower charges, and how closely do they scrutinize bills for accuracy?

Smith, Estrada, and McCullick’s cases are all “chargemaster” bills, calculated from the master price list that health providers place on services. Patients who have insurance don’t generally pay them. But they matter because they are often the starting point for the negotiated price the insurer agrees is reasonable to pay for the services. Patients are typically responsible for 10% to 20% of the negotiated price, their coinsurance — and when prices are this high, that can be a big number. What’s more, those negotiated rates are difficult for patients to access (until they get the bill) and seemingly arbitrary.

Also, because health insurers can offset high outlays one year by raising premiums and deductibles the next, they have little incentive to bargain hard for good deals for the patients they cover. So patients all pay unknowingly, indirectly.

In the cases of Smith and Estrada, their insurers paid the majority without questions. Penn State’s Hershey Medical Center, which treated Smith, received $61,000, or 62% of what it charged. New Mexico Surgery Center Orthopaedics, which treated Estrada, received $46,000, or 82%.

McCullick’s insurer, on the other hand, said it would pay Intermountain Health just 28% of his $77,000 bill. Then came another curveball: The hospital, which said it had gotten preauthorization, discovered after the fact that his scan was not covered. So it billed McCullick the full chargemaster rate of $77,000 — or, it offered, he could pay the cash rate of $14,259.

In an emailed statement, Chris Bond, a spokesperson for AHIP, the leading trade group for health insurers, blamed hospitals for the trouble, saying that plans are “focused on making benefits and coverage as affordable as possible for their members,” and that: “As the largest single category per premium dollar spent, increases in the cost of hospital-based care have an outsized impact on premiums.”

In a health system in which prices can vary exponentially with little transparency, how can patients afford to get sick?

‘It Makes No Sense’

Americans as a top priority for government in 2026, according to an Associated Press-NORC poll, expressing particular concern about cost, access, and insurance coverage.

The first Trump administration required insurers and hospitals to publish files containing cash, gross, and negotiated prices for various items and services. These raw, machine-readable price lists — often hundreds of pages filled with medical billing codes — to patient-customers.

Five years later, they’ve been ingested, parsed, and enriched by academics and startups, shedding light on the often-shocking disparities in prices and how they’ve come to exist.

“When we look at the data, whether it’s from a chargemaster or what insurers paid, it’s all over the map — it makes no sense,” said Marcus Dorstel, senior vice president of operations at Turquoise Health, a price transparency startup with payers and providers as clients. “The variation is huge, even in a specific area.”

When researchers at the Johns Hopkins Bloomberg School of Public Health looked at the data, they discovered that the price different insurers pay for the same billed charges “can be three or more times different at the same hospital,” said Ge Bai, a professor of health care accounting who was among the researchers.

The prices insurers pay are determined by numerous factors, including what’s in their contracts with health systems. Some health plans, such as Smith’s, automatically pay a percentage of the hospital’s billed charges, incentivizing hospitals to increase their rates. Hershey Medical Center increased its prices for 11 common hospital billing codes by an average of about 30% from 2023 to 2025, Dan Snow, a data scientist at Turquoise Health, calculated for this article. But those prices were not much different than those of other hospitals in Pennsylvania.

In other cases, an insurer might agree to pay a health system a case rate — a standard rate for a type of care, say a colonoscopy or an inpatient stay for pneumonia.

But there’s a lucrative catch, called a “carve-out,” which refers to a particular benefit that’s negotiated and paid separately. If the hospital used expensive drugs or devices, for instance, they can be billed in addition to the bundled case rate, with no limits on hospital markups. That was the case with McCullick’s PET scan; about 80% of the charge was not for the scan, but for a new kind of drug injected before the scan to detect cancer.

Most often the final prices depend on the relative negotiating power of the insurer and the health system: Which side has enough market sway to walk away if the other doesn’t meet its demands?

Such factors “can explain the price variations and patterns that we see,” Dorstel said. “In some markets insurers are price-makers, and in others they are price-takers.”

For Insurers, Paying More Is Profitable

Insurers aren’t incentivized to lower prices, because high prices mean they “get a slice of a bigger pie,” Bai said.

By law, insurers must spend 80% or 85% of premiums on patient care. But when prices rise, they can pass on the increase to customers in the form of higher premium costs and still meet their legal obligation. So higher premiums mean less money for the patient and more profit for the insurer.

For each spinal injection Estrada received, his insurance company’s contracted rate was $23,237.50. Estrada’s coinsurance was $5,166.20. With a high-deductible plan, he was asked to pay all of that more than $5,000 bill.

When he called to challenge the big bill, he said, the surgery center’s administrator told him the charges were the result of a “legacy contract” with the insurer that is “advantageous” and “favorable” to the center.

New Mexico Surgery Center Orthopaedics’ charges are many times those of the hospital where the center’s doctors admit patients, for example; there, Estrada’s insurance company’s contracted rate for the same spinal injection is just $2,058.67. And compared with the roughly $20,000 the insurer paid for each of Estrada’s injections, other insurers pay the center about $700 for the same procedure, Snow found.

The surgery center is part of a national group that owns more than 535 surgical facilities, United Surgical Partners International, which in turn is owned by Tenet Healthcare, a for-profit health conglomerate. That kind of market dominance can lend companies the negotiating power to charge — and get paid — what they want, Bai said.

The surgery center, United Surgical Partners International, and Tenet Healthcare did not reply to multiple requests for comment from Ñî¹óåú´«Ã½Ò•îl Health News.

With charges prenegotiated, insurers have little incentive to scrutinize questionable bills. When Smith asked for an itemized bill for her surgery, she discovered that she had been billed for two surgeries: one for the ectopic pregnancy removal and another because the surgeon noticed signs of endometriosis and performed a biopsy. Both were billed at the contracted rate of $37,923.

She was livid at the charges, which to her seemed like double-dipping. “That was one surgery,” she said. “There was one incision.”

A Yale University-trained lawyer, Smith consulted the federal Centers for Medicare & Medicaid Services’ , which note the two billing codes used for her surgery generally can’t be “billed together for the same patient encounter” because one more or less is bundled with the other.

Smith said she reached out to the Penn State hospital, the insurer, and even the state attorney general without resolution. So she expects she will, reluctantly, have to pay the $5,250 coinsurance that the hospital and insurer say she owes.

In response to questions from Ñî¹óåú´«Ã½Ò•îl Health News, Scott Gilbert, a spokesperson for the health system, did not respond to the specifics of this case, but wrote: “Penn State Health recognizes that health care billing can be confusing and often overwhelming for patients. The process involves many factors, including the type of care provided, where it’s delivered and the details of a patient’s insurance coverage.”

A ‘Reasonable’ Price?

After a reporter sent multiple inquiries to Intermountain Health, McCullick said an agent asked him what would be “a reasonable amount to resolve the situation.”

Sara Quale, a spokesperson for Good Samaritan Hospital, the Intermountain affiliate where he got the PET scan, wrote: “We sincerely regret the frustration this situation has caused Mr. McCullick,” noting that “we have been in consistent contact with him and will continue to follow up as needed.”

McCullick said he wants to pay his fair share but is still trying to figure out what that is — certainly less than the different self-pay prices he’s been offered, which all top $10,000. “The fluid nature of these numbers is mind blowing,” he wrote in an email.

As for Estrada, he was so angry that he decided not to go ahead with the nerve ablation. While he was being prepped for the procedure, Estrada recalled, the physician said he had “heard he might sue” and chastised him for being a troublemaker. The hospital did not respond to a request for comment on the allegations, and Estrada said he had never threatened legal action.

Estrada got off the table and put his shirt back on. “I’m not going to let this person put a big needle into my back.”

Bill of the Month is a crowdsourced investigation by and that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? !

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The boys sat in one waiting room and then another. Two hours and 20 minutes passed before the two were isolated, according to obtained by Ñî¹óåú´«Ã½Ò•îl Health News. Then two more hours ticked by.

As the sun rose, an emergency room doctor called the state epidemiologist and described the symptoms. The public health official told him to keep the kids in the hospital and quarantine them. Shortly after that call, the patients were diagnosed.

It was measles.

Hospital staff gave the father instructions on how to quarantine the family and sent them home.

The virus exposed at least 26 other people in the hospital that January day, federal investigators determined. Health inspectors for CMS investigated the measles infections and other failures in care and concluded that the twins’ symptoms should have triggered an isolation procedure for which Mission Hospital staffers had trained seven months earlier. CMS designated Mission in “” for the exposures and other unrelated issues, one of the most severe sanctions a hospital can face, threatening to pull federal funding unless it remedied the problems.

A spokesperson for Mission said its staff was trained to manage airborne sickness and is following federal rules.

As U.S. hospitals face an increasing risk of encountering measles, and pressure to immediately spot it, health care workers face an unusual barrier: Many don’t know what it looks like.

“There’s a word, ‘morbilliform’ — it means measles-like, and there are lots of viruses that can cause a rash that looks like a measles rash in children,” said Theresa Flynn, a pediatrician in Raleigh and the president of the North Carolina Pediatric Society. In 30 years in health care, she’s never seen a measles case, she said.

North Carolina has reported more than 20 cases since mid-December, and more than 3,000 people nationwide have been infected since the beginning of 2025.

Children in areas with low immunization rates to outbreaks, triggering public health campaigns to promote the measles vaccine. CMS Administrator Mehmet Oz encouraged vaccination in a .

, mumps, and rubella vaccine, a person has a 3% chance of getting the virus after exposure. If exposed, an unvaccinated person has a 90% chance of being infected, according to the CDC. It can take a week or two before someone infected with measles shows symptoms.

But for the past year, the Trump administration has . Health and Human Services Secretary Robert F. Kennedy Jr. was a longtime anti-vaccine activist before taking office, and under his leadership the Centers for Disease Control and Prevention has reduced the number of shots recommended to children.

After measles erupted in West Texas last year, Kennedy publicly for the virus, including steroids, antibiotics, and cod liver oil.

Infectious disease experts and doctors said federal policies have left health care workers to lean on their own experience or guidance from their state public health systems to fight a disease that many are preparing to see for the first time and that initially may behave like the common cold.

“As measles becomes more common, all of us are leveling up in our ability to recognize and immediately respond to suspected measles,” Flynn said.

Three C’s

Officially, the U.S. has maintained “measles elimination status” since 2000, meaning the U.S. has avoided significant spread of the virus. After outbreaks in Texas, Arizona, Utah, and now South Carolina, the nation is on track to lose that designation before the year is out. tie elimination status to a lack of a continuous viral spread persisting for 12 months.

One county in South Carolina, an hour’s drive from Asheville, has had in the current outbreak — more than Texas reported in all of 2025.

Symptoms of measles, a virus that , can include fever, cough, a blotchy rash, and red, watery eyes. Researchers consider measles among the most contagious diseases, and the virus may remain active for up to two hours after an infected person leaves a room.

It can be lethal, with .

In 2025, two children in Texas and one adult in New Mexico died of measles.

Along with tracking data, the CDC on its website for diagnosing measles. State public health agencies and some counties have developed dashboards tracing the disease as it surfaces in such places as hospitals, schools, grocery stores, and airports. Large hospital systems developed staff training protocols last year and shared them with area clinics.

Look for the three C’s, : cough, coryza (cold symptoms), and conjunctivitis (pink eye). According to CMS inspection records, HCA Healthcare, which owns Mission Hospital, trained Mission staff on the three C’s early last year. On top of failing to isolate the twin patients right away, Mission staff didn’t have a designated area for patients with respiratory symptoms, federal inspectors found.

The CDC advises health workers to immediately place patients with measles or suspicious symptoms in a special isolation room, where airflow is controlled inward. The Mission patients were separated from other patients only by plastic partitions, according to the CMS records.

Mission spokesperson Nancy Lindell said the hospital was equipped and staffed to manage airborne illnesses like measles.

“Our hospital has been working with state and federal health officials on proactive preparedness, and we are following guidance provided by the CDC,” Lindell said.

(Dogwood Health Trust, a private foundation established as part of HCA’s purchase of Mission Health, helps fund Ñî¹óåú´«Ã½Ò•îl Health News coverage.)

Most U.S. clinics and hospitals have never experienced measles cases, said Patsy Stinchfield, a former president of the National Foundation for Infectious Diseases and a nurse practitioner. She called CMS’ Immediate Jeopardy penalty for Mission “extreme,” given the virus can be so difficult to identify.

“In the middle of winter right now, measles looks like every other viral respiratory infection that kids come in with,” Stinchfield said.

The CDC has been less communicative in the past year with clinics about their response to outbreaks, said health workers and infectious disease experts. This disconnect began soon after Trump took office, according to a Ñî¹óåú´«Ã½Ò•îl Health News investigation finding that health officials in West Texas were unable to talk with CDC scientists as measles surged last February and March.

“We certainly do not feel the support or guidance from the CDC right now,” said Brigette Fogleman, a pediatrician at Asheville Children’s Medical Center, where staff members have come up with their own method of staving off the virus: screening patients over the phone and in their cars before a visit.

In response to questions about how the CDC is supporting health care organizations during the measles resurgence, spokesperson Andrew Nixon said that “state and local health departments have the lead in investigating measles cases and outbreaks” and that the CDC provides support “as requested.” He pointed to numerous guides and simulation tools the agency has developed as the virus has spread.

Jennifer Nuzzo, an epidemiologist and director of the Pandemic Center at Brown University, acknowledged that diagnosing measles is a major challenge, emphasizing that coordination among public health agencies is critical in overcoming that challenge.

Stinchfield attributed the spread of measles to CDC leaders’ lack of communication to clinics and to the public — no ads on buses, no social media campaigns, no sense of urgency. “When you are at the highest level of measles cases in 30 years, we should be seeing lots more from our federal government,” Stinchfield said. “And I think it’s harming kids and causing an inordinate amount of work and expense that really doesn’t belong in health care right now.”

State Prepares for More Measles Cases

In North Carolina’s Buncombe County, home to Asheville and Mission Hospital, health officials had counted seven measles cases by mid-February and anticipated many more, according to state epidemiologist Zack Moore. It’s unclear how many of those are connected to the Mission exposure.

“We are preparing for a future in which we follow a trajectory like South Carolina,” Moore said, “where we see sort of a gradual accumulation of cases, and then all of a sudden it reaches kind of a tipping point, and we see a more explosive growth in the outbreak and spread across the state.”

Fogleman, who is also a pediatrician, and Buncombe health department director Jennifer Mullendore spoke during a hosted by the county, urging families to get their children vaccinated, debunking vaccine misinformation, and updating parents on local case numbers.

Days before, a local private school had quarantined about 100 students after an exposure. were immunized, according to state data.

At Fogleman’s clinic, parents are asked to wait in their vehicles with their children, and staffers come out to screen them there. Some parents resist vaccination and note recently weakened federal recommendations around measles vaccines , she said.

Kennedy handpicked the committee members who made those recommendations, with several members having spread medical misinformation in the past.

One parent recently told a nurse, “It’s only measles. It doesn’t kill anybody,” Fogleman said.

That’s not true, her team must explain.

As the clinic holds families in the parking lot, trying to figure out whether symptoms point to the dangerous virus, it’s difficult to get the message across, Fogleman said, especially when the nation’s top disease agency hasn’t conducted a widespread information campaign about the risks from measles — or the vaccine’s ability to almost entirely prevent it.

“We can’t change the past,” Fogleman said. “All we can do is try to educate and move forward.”

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Those preliminary numbers from the open enrollment period that ended in January are less than a third of what state officials had projected. Nevada is the third state so far to launch a public option plan, along with Colorado and Washington state. The idea is to offer lower-cost plans to consumers to expand health care access.

But researchers said plans like these are unlikely to fill the gaps left by sweeping federal changes, including the expiration of enhanced subsidies for plans bought on Affordable Care Act marketplaces.

The public option gained attention in the late 2000s when Congress considered but ultimately rejected creating a health plan funded and run by the government that would compete with private carriers in the market. The programs in Washington state, Colorado, and Nevada don’t go that far — they aren’t government-run but are private-public partnerships that compete with private insurance.

In recent years, states have considered creating public option plans to make health coverage more affordable and to reduce the number of uninsured people. Washington was the first state to launch a program, in 2021, and Colorado followed in 2023.

Washington and Colorado’s programs , including a lack of participation from clinicians, hospitals, and other care providers, as well as insurers’ rate reduction benchmarks or lower premiums compared with other plans offered on the market.

Nevada law requires that the carriers of the public option plans — Battle Born State Plans, named after a state motto — lower premium costs compared with a benchmark “silver” plan in the marketplace by 15% over the next four years.

But that amount might not make much difference to consumers with rising premium payments from the loss of the ACA’s enhanced tax credits, said Keith Mueller, director of the Rural Policy Research Institute.

“That’s not a lot of money,” Mueller said.

Three of the eight insurers on the state’s exchange, Nevada Health Link, offered the state plans during the open enrollment period.

Insurance companies plan to meet the lower premium cost requirement in Nevada by , which prompted opposition from insurance brokers in the state. In response, Nevada marketplace officials told state lawmakers in January that they will give a flat-fee reimbursement to brokers.

The public option has faced opposition among state leaders. In 2024, a state judge dismissed a lawsuit, brought by a Nevada state senator and a group that advocates for lower taxes, that challenged the public option law as unconstitutional. They have appealed to the state Supreme Court.

Federal Policy Impacts

Recent federal changes create more obstacles.

Nevada is consistently among the states with the of people who do not have health insurance coverage. Last year, in the state received the enhanced ACA tax credits, averaging $465 in savings per month, according to KFF, a health information nonprofit that includes Ñî¹óåú´«Ã½Ò•îl Health News.

But the enhanced tax credits expired at the end of the year, and it that lawmakers will bring them back. Nationwide ACA enrollment has decreased by so far this year, down from record-high enrollment of 24 million last year.

About 4 million people are expected to lose health coverage from the expiration of the tax credits, according to the . An additional 3 million are because of other policy changes affecting the marketplace.

, an associate research professor at the Center on Health Insurance Reforms at Georgetown University, said the changes to the ACA in the Republicans’ One Big Beautiful Bill Act, which President Donald Trump signed into law last summer, will make it more difficult for people to keep their coverage. These changes include more frequent enrollment paperwork to verify income and other personal information, a shortened enrollment window, and an end to automatic reenrollment.

In Nevada, the changes would amount to an losing coverage, according to KFF.

“All of that makes getting coverage on Nevada Health Link harder and more expensive than it would be otherwise,” Giovannelli said.

State officials projected ahead of open enrollment that about 35,000 people would purchase the public option plans. Of the 104,000 people who had purchased a plan on the state marketplace as of mid-January, 10,762 had enrolled in one of the public option plans, according to Nevada Health Link.

Katie Charleson, communications officer for the state health exchange, said the original enrollment estimate was based on market conditions before the recent increases in customers’ premium costs. She said that the public option plans gave people facing higher costs more choices.

“We expect enrollment in Battle Born State Plans to grow over time as awareness increases and as Nevadans continue seeking quality coverage options that help reduce costs,” Charleson said.

According to KFF, nationally the enhanced subsidies an average of $705 annually in 2024, and enrollees would save an estimated $1,016 in premium payments on average in 2026 if the subsidies were still in place. Without the subsidies, people enrolled in the ACA marketplace could be seeing their premium costs more than double.

Insights From Washington and Colorado

Washington and Colorado are not planning to alter their programs due to the expiration of the tax credits, according to government officials in those states.

Other states that had recently considered creating public options have backtracked. Minnesota officials a public option in 2024, citing funding concerns. Proposals to create public options in Maine and New Mexico also sputtered.

Washington initially saw meager enrollment in its Cascade Select public option plans; only 1% of state marketplace enrollees chose a public option plan in 2021. But that changed after lawmakers with at least one public option plan by 2023. Last year the state reported that 94,000 customers enrolled, accounting for 30% of all customers on the state marketplace. The public option plans were the lowest-premium silver plans in 31 of Washington’s 39 counties in 2024.

found that since Colorado implemented its public option, called the Colorado Option, coverage through the ACA marketplace has become more affordable for enrollees who received subsidies but more expensive for enrollees who did not.

Colorado requires all insurers offering coverage through its marketplace to include a public option that follows state guidelines. The state set premium reduction targets of 5% a year for three years beginning in 2023. Starting this year, premium costs are medical inflation.

Though the insurers offering the public option did not meet the premium reduction targets, enrollment in the Colorado Option has increased every year it has been available. Last year, the state saw record enrollment in its marketplace, with purchasing a public option plan.

Giovannelli said states are continuing to try to make health insurance more affordable and accessible, even if federal changes reduce the impact of those efforts.

“States are reacting and trying to continue to do right by their residents,” Giovannelli said, “but you can’t plug all those gaps.”

Are you struggling to afford your health insurance? Have you decided to forgo coverage? Click here to contact Ñî¹óåú´«Ã½Ò•îl Health News and share your story.

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While more Americans enrolled than , the number was  what it was at the same time last year. And experts say it will be months until the numbers are final. The timing will depend on how many of those people who signed up for coverage actually pay their premiums and remain enrolled. 

In coming weeks, “consumers may find they really can’t afford the premiums and cancel their plans, while carriers may also cancel coverage for nonpayment,” said Pat Kelly, executive director of Your Health Idaho, a state-based ACA marketplace, during a Jan. 22 call with reporters. 

The drop comes after several years of record-breaking enrollment, with 24.2 million sign-ups for the 2025 enrollment year. Enrollment growth took off after enhanced subsidies â€” which lowered the amount most households had to pay out of their own income toward premiums and removed an upper-income cap â€” went into effect during the Biden administration. Lawmakers, in adopting the enhanced subsidies, set an expiration date of Dec. 31, 2025. 

Congressional debate over extending those more generous subsidies was heated, even . Now, the subsidies are back to their original level, and people who earn more than four times the federal poverty rate (about $62,600 for an individual or $84,600 for a couple) can’t qualify for any at all. 

 in most states this year, with the biggest drop in North Carolina, where sign-ups fell by nearly 22%, . 

In a few places — including New Mexico, Texas, and Maryland, as well as the District of Columbia — the number of people selecting ACA plans increased. 

The jump was largest in New Mexico, with its tally of people selecting plans up by nearly 18%. Increases were in the single digits in the other states and Washington, D.C. 

New Mexico — uniquely — used its own tax dollars to fully offset the loss of the more generous federal tax subsidies for all consumers. , including California, Colorado, Maryland, and Washington, used state money to help some enrollees. 

We’ll keep watching to see how this unfolds over the coming weeks.

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