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

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

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

This <a target="_blank" href="/insurance/health-hub-kids-lose-insurance-coverage-gop-healthcare-cuts/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

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

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

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

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

Verite News and ºÚÁϳԹÏÍø News agreed to not use Yolibeth’s full name, because she is worried about repercussions related to her immigration status.

Romero, who works for a local immigrant advocacy group, said that in a single week she received calls from eight immigrant families who had been denied after applying for Medicaid on behalf of children who are citizens.

“Because of the law that passed in Louisiana, children are losing their Medicaid every day,” Romero said in Spanish. “The more time that goes by, the more children are impacted by it.”

Romero said that all children from mixed-status families are likely to be denied Medicaid by the end of the year.

Missing Out on Care

Nationally, many immigrants said they skipped or delayed healthcare last year, citing issues including costs, struggles finding services, and fears about their or a family member’s immigration status, by KFF and The New York Times. Immigrants without legal status were the most likely to skip or delay care for themselves or their children. An increasing number of immigrants avoided applying for programs like Medicaid, too scared to risk drawing attention to their or a family member’s immigration status, even if they were eligible.

In Louisiana, where about a third of residents are enrolled in Medicaid, the has added to those fears. The law requires the Louisiana Department of Health to verify Medicaid applicants’ U.S. citizenship, terminate coverage for applicants with “unsatisfactory” proof of status, and report those applicants to U.S. Immigration and Customs Enforcement. Since the measure passed in Louisiana, similar bills have passed in North Carolina, Wyoming, Indiana, and Tennessee. At least three other states were considering similar measures this year.

State Rep. Chance Keith Henry, a Republican who sponsored the Louisiana bill, did not return calls or emails from Verite News seeking comment on the effects of the law. He said in last year’s state House floor debate that he didn’t anticipate any chilling effect on immigrants seeking healthcare. He also said that children born in the U.S. to parents without legal status would still receive Medicaid.

“This is making sure that American citizens and our taxpayers are taken care of and not illegal immigrants,” he said in the May 2025 floor debate.

State health officials said Medicaid applicants can’t be reported to ICE under the law without a formal investigation request by “the appropriate authorities.” Otherwise, reporting applicants without their consent would violate federal Medicaid and privacy laws.

But immigrant rights advocates say the law has had a chilling effect on applications and has led to immigrant families losing healthcare and resources they qualify for.

They said cutting off that access compounds the fear created by immigration enforcement crackdowns in states including and Minnesota, and by federal policy changes such as between ICE and the Centers for Medicare & Medicaid Services and for Medicaid.

Advocates said it’s unclear whether the new law has led to any detainments or deportations of people applying for Medicaid or other public benefit programs. But Aaron Moseley-Saldívar, a legal and public policy adviser with the Louisiana Organization for Refugees and Immigrants, said the legislative and policy changes act as a deterrent to immigrant families, even if they qualify for Medicaid as a legal resident, refugee, or asylum seeker, or have another form of legal status.

“ People are not applying for things that they probably otherwise would be eligible for, because they are intimidated by these laws and they’re worried that they’re going to get caught up in the system,” Moseley-Saldívar said. “ You have a large amount of people in Louisiana that are not leaving their homes at all, because they’re afraid of policies like this.”

Moseley-Saldívar said he believes the Louisiana law and similar policies are primarily aimed at removing people from state services. The state legislature passed a on May 27 to build on the 2025 law. It seeks to further narrow which noncitizens are qualified for public benefits in Louisiana, even though such restrictions for Medicaid are typically governed at the federal level.

The Louisiana Department of Health’s on the new law does not contain any data on applicants reported to ICE since the law took effect last August. But by February of this year, the state had terminated the coverage of 87% of enrollees who had unverified immigration or citizenship status as of June 2025.

From July 1, 2024, to June 30, 2025, according to the report, 1% of the 1.6 million people in Louisiana enrolled in Medicaid weren’t citizens, and fewer than 4,000 had an unclear immigration status.

‘A Double-Edged Sword’

Late last year, more than 600 people lined up at 4 a.m. outside a Louisiana Organization for Refugees and Immigrants health fair, hoping to receive a free health checkup, said Sharon Njie, the nonprofit’s communications and strategic partners director. The fair was scheduled to begin at 9 a.m.

“ We had to start calling the doctors to see if they could come there at 7 a.m., because these people have been waiting for two hours in the cold,” Njie said. “We were so overwhelmed.”

Romero said some families in the New Orleans area have been waiting six months to vaccinate their children at one of the free events put on by healthcare providers. But she said fewer free health events for children have been scheduled, and even fewer for adults. For many of the residents she works with, Romero said, preventive care such as a Pap smear or prostate screening is out of reach.

“The challenge right now is a double-edged sword of people not going to the doctor out of fear but also ending up in an emergency that is too hard to treat,” Romero said. “It’s a life-or-death situation.”

For families with no other option, Njie and Romero try to connect people to doctors sympathetic to the immigrants’ plight and willing to absorb the cost of care or offer a discount, such as medical providers who are immigrants themselves.

But that does not address the systemic problems of immigrant access to healthcare created by the state law and federal immigration policies, or the lower quality of care for those who seek it. For example, one local New Orleans clinic, Luke’s House, caters to Spanish-speakers and immigrants, though it’s staffed largely by medical students, Romero said, so the level of care isn’t the same.

While she waits for word on three of her kids’ Medicaid applications, Yolibeth secured a free insurance plan for them on the Louisiana Affordable Care Act marketplace, she said. But she hasn’t found any doctors who will accept the coverage, she said, leaving them effectively uninsured.

When her 13-year-old son recently fell ill, she wanted to take him to a pediatrician. But she said she couldn’t afford the $200 the appointment would have cost, plus any tests and medication.

Without a doctor’s note to provide proof of his illness, she said, she had to send her sick son to school, potentially exposing other children to a virus. Earlier in the school year, she was called into the school’s office after he missed five days because of illness. In Louisiana, truancy can be punishable with parental fines, community service, or jail.

Romero said if enough school is missed because of sickness, a criminal case could lead to family separation.

“That is unthinkable,” she said. “All because a family could not afford to take a child to see the doctor as opposed to these things being guaranteed to begin with.”

This <a target="_blank" href="/medicaid/immigrants-medicaid-children-applications-louisiana-crackdown-citizenship/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

One Minnesota lawmaker wants to steer money from an existing healthcare tax back to hospitals so they can expand their charity care programs for patients who can’t afford their bills.

The proposal follows a Minnesota Star Tribune-ºÚÁϳԹÏÍø News investigation that found hospitals across the state spend far less on charity care than hospitals in many other states, and use widely different standards to decide who qualifies for free or discounted care.

State Rep. Steve Elkins said helping hospitals with their own tax contributions makes sense as more Minnesotans are losing health insurance.

“Hospitals are providing a fair amount of charity care, but they kind of have an obligation to do something more than they are doing,” said Elkins, who May 13, in the final days of the legislative session.

Elkins noted recent reports by the and Minnesota’s indicating some hospitals are gaining more in nonprofit tax benefits than they are spending on community benefits, including charity care.

Simply demanding more from hospitals isn’t necessarily the answer, though, Elkins said. Newly released financial data shows 31 Minnesota hospitals meet the state’s definition of financial distress because they lost money on operations in four of the last eight years.

Hennepin County Medical Center in Minneapolis appears poised for a this year to prevent the urban trauma center from closing.

HCMC provided the most charity care of any Minnesota hospital in 2024, an estimated $88 million, which consumed more than 3% of its operating budget. Elkins said he suspects some charity care patients from other hospitals are being diverted to HCMC, which has a process for automatically screening patients for financial needs upon admission.

Incentivizing hospitals to be more generous could take pressure off HCMC, Elkins said. The state gains about $250 million per year from a 1.56% tax on hospital patient revenue, which roughly equates to the $241 million that hospitals spent on charity care in 2024, according to estimates by the Minnesota Department of Health.

“You could pretty much make every Minnesota hospital whole with all of the charity care they’re providing,” he said.

A lack of state standards allows some hospitals to limit free care to people making less than $15,000, while others offer care to people living alone who make as much as $47,000. Being stingy with charity care can be self-defeating for hospitals, which end up wasting money in debt collection efforts from patients who couldn’t afford their bills in the first place, said Eli Rushbanks, director of policy advocacy for Dollar For, a nonprofit that helps U.S. patients apply for charity care.

“It’s not really a question of whether they are doing better than other states. It’s a question of whether they are doing enough” for Minnesota’s patient population, he said. “Minnesota has charity care-eligible patients who are not receiving charity care.”

Some state-by-state disparities in charity care are beyond the control of hospitals, and even signal positive trends. Lower rates of chronic disease mean Minnesotans need less healthcare in the first place. Higher levels of insurance coverage mean they don’t need charity care as much to afford their healthcare.

Elkins’ idea of taking money from hospitals and giving it back with strings seemed unnecessary to leaders of the Minnesota Hospital Association, which would prefer to see the tax disappear.

Joe Schindler, the association’s vice president for finance policy, said one alternative would be moving the money into the Medicaid health insurance program for people with low incomes or disabilities. He said that would unlock more federal matching dollars to benefit patients and help close the reimbursement gap in that program.

Hospital systems have discretion to decide the income and financial thresholds by which patients qualify for financial assistance in the form of free care or partial discounts. Elkins’ proposal wouldn’t change that, but other state leaders and advocates have proposed models that standardize how charity care is offered.

Dollar For recommends policies that at least provide discounts to households with incomes around 400% of the federal poverty level, because there are fewer bad debt cases and lawsuits involving patients with incomes above that level, Rushbanks said. The Star Tribune-ºÚÁϳԹÏÍø News analysis of 123 Minnesota nonprofit or government-run general hospitals showed 52 provide discounts to patients with household incomes at 350% or higher, but the rest fall below that level.

After investigating irregularities in charity care at Mayo Clinic last year, Minnesota Attorney General Keith Ellison recommended that the state set a minimum floor for charity care eligibility across all hospitals. He also recommended all hospitals adopt presumptive eligibility systems that assume patients need financial help until proven otherwise.

This week’s article “makes it clear there is more work in front of us, and I will continue to use the power of my office to help Minnesotans get the medical care they need, no matter what’s in their bank accounts,” Ellison said in a statement.

Charity care is only one category of community benefits reported by hospitals for which they don’t receive direct payment. Other examples include providing medical education services for training doctors and nurses, and maintaining money-losing services such as obstetrics or emergency care in rural and underserved communities.

Whether hospitals gain more in nonprofit tax savings than they spend on community benefits depends on what’s included in the state auditor’s analysis. Hospitals are chronically underpaid for the cost of medical care by Medicaid, and the state hospital association reports that as a community benefit.

The legislative audit found that only 28 Minnesota hospitals spent less on community benefits than they saved in taxes in 2023, when that underpayment was part of the total. When excluded along with other research and education expenses, 62 hospitals spent less on the remaining community benefits than they gained in tax benefits as nonprofits.

Elkins said his idea to redistribute tax revenue could motivate hospitals to spend more on charity care or other community benefits. The state also could recruit more doctors, he said, if Minnesota hospitals increased residency slots for required on-the-job training after medical school.

The idea is an easier sell right now, given Minnesota’s budget surplus, he acknowledged, but could create challenges in future years when lawmakers would have to find ways to replace the lost revenue for other state needs. The lawmaker said he intends to bring it up next year if it doesn’t make it into the state’s health budget this session.

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

The certified professional midwife pressed the button on a handheld Doppler ultrasound machine she placed on Collins’ belly. “That’s her heartbeat,” she said to Collins’ 3-year-old daughter, who sat beside her mom as a whooshing sound filled the room. “I think Mommy’s baby’s right here.”

The midwife is not licensed as a nurse. In Georgia, that makes what she’s doing illegal. ºÚÁϳԹÏÍø News agreed not to identify her by name.

Georgia is one of seven states where delivering babies can earn non-nurse midwives, at minimum, a cease-and-desist letter requiring them to end their careers. In North Carolina, it’s a . In New York, .

Meanwhile, demand for their services is increasing. Intended home births rose by 42% nationally from 2020 to 2024, according to the National Center for Health Statistics, and those births are often overseen by certified professional midwives. In Georgia, they rose by 72%. Midwives who assist with home births typically see clients from prenatal appointments through after childbirth, providing more postpartum checkups than most new mothers receive.

Home births make up nationwide. In the eight states where they were most common in 2024 — Hawai‘i, Idaho, Montana, Pennsylvania, Utah, Vermont, Wisconsin, and Wyoming— they made up 3-5% of births.

As that number rises, midwifery advocates said, regulating the practice with licenses would allow home births to be safer. Free birth — without the help of a skilled professional before or after labor — can be .

“People are going to keep having their babies at home, and they deserve a trained provider,” said Missi Burgess, president of the Georgia chapter of the National Association of Certified Professional Midwives.

For decades, professional midwives have been advocating for laws to legalize and regulate their profession. More lawmakers have supported those efforts in the past 15 years, with 36 states and Washington, D.C., allowing them to get licensed to deliver babies. Last year, a wave of state lawmakers — in Georgia, Mississippi, Nebraska, New York, North Carolina, Ohio, and West Virginia — tried to add their states to the list, although none of their bills has become law.

Certified professional midwives deliver babies in homes or birth centers. Rather than attend nursing school — which many can’t afford — they earn a nationally recognized certificate by attending at least 55 births and demonstrating their knowledge. Nurse-midwives more often deliver babies in hospitals or clinics than in patients’ homes.

Some hospitals and doctors oppose midwife licensing proposals without certain guardrails. The American College of Obstetricians and Gynecologists showing that infants are twice as likely to die during planned births at home or in birth centers as in hospitals, while acknowledging that the data remains limited. It doesn’t account for several factors, including who assisted in the birth.

Still, prominent stories of home births with midwives gone wrong contribute to the skepticism around licensing laws. In 2023, The Washington Post of a licensed midwife who pleaded guilty to felonies in Virginia after an infant death and assisted with home births in Maryland in which two more babies died.

In Mississippi, a bill that would have regulated and licensed professional midwives died after a state senator blocked a vote in the committee he chaired. Democratic Sen. Hob Bryan he didn’t “wish to encourage that activity.”

But midwives said they have a sympathetic ear now in the Trump administration, with its Make America Healthy Again movement. Cassaundra Jah, executive director of the , said she has been on calls with midwifery groups pushing for the Department of Health and Human Services to provide legal protections for them, and some midwives have been in contact with the agency.

HHS spokesperson Emily Hilliard declined to comment on policy proposals but told ºÚÁϳԹÏÍø News that the administration “regularly meets with a wide range of stakeholders to hear input from the American public.”

Hospitals Want Guardrails

Advocates for the license say allowing certified professional midwives to provide care would help address a shortage of maternity care providers.

“Some midwives are leaving our state,” Rep. , a chiropractor who sponsored the Georgia bill, said during a hearing on the measure last year. “They’re being forced to quit. And now we have a shortage of these providers to take care of our pregnant moms.”

A by the March of Dimes found that 35% of counties in the U.S. have no birthing facility or obstetric provider. Georgia has the 13th-highest maternal mortality rate in the nation, according to the .

After the U.S. Supreme Court’s reversal of Roe v. Wade in 2022 eliminated federal protection for abortion, six-week abortion bans prompted more providers to leave states such as Georgia and Texas. Idaho lost by December 2024, two years after its abortion ban took effect. Doctors who left states with such laws cited fear of prosecution and an inability to provide the standard of care.

Of the 13 states with the fewest maternity care providers per capita, nine had a full or six-week abortion ban as of 2024, .

Licensing midwives won’t solve the larger maternity care shortage, but it’s a first step, said , a professor of midwifery and the principal investigator at the Birth Place Lab at the University of British Columbia. Certified professional midwives currently attend only about 1.4% of births in the U.S., according to federal data.

The would have granted certified professional midwives licenses through a state board, allowed them to administer lifesaving medications, and required their services to be covered by private insurance and Medicaid. They would not have needed a physician to supervise them. Without that mandate, giving birth outside of a hospital could be an option for more people.

But the Georgia Department of Public Health and the Georgia Hospital Association opposed the licensing bill, primarily because they wanted more regulations than the midwives were willing to accept — including physician supervision.

Anna Adams, a spokesperson for the hospital association, suggested establishing transfer agreements that required all women planning to have a home birth to register at the hospital first. When a laboring woman is transferred to a hospital, which happens in about , “we have no prior knowledge of this patient,” Adams said. “It’s a tricky situation to inherit when you’re trying to save the mother and the baby without any background.”

Georgia midwives said they planned to bring the licensing proposal back next year.

In early April, three midwives for restricting their ability to practice, arguing that the rules violate the state constitution.

“Every pregnant person should be able to choose where they give birth and with whom,” said Jamarah Amani, a plaintiff in the lawsuit and co-founder of the .

Black women are three times as likely to die during or after childbirth as white pregnant patients. In January, a prominent Black nurse-midwife in South Carolina died after unexpected complications from childbirth.

Today, midwives and their clients are predominantly white, but the home birth rate among Black women rose 42% nationally from 2019 to 2024, according to the Centers for Disease Control and Prevention.

“Ultimately the system has failed us as a people,” said Tina Braimah, a Black nurse-midwife who attended home births for a decade. She then opened a in North Carolina, allowing her to see more clients from a variety of backgrounds. “When the system consistently fails you, you look for other options.”

Becoming Part of the System

Many maternal health researchers say mothers fare better when midwives are a key part of the health system. In 2018, researchers at the Birth Place Lab published a study of all 50 states showing that integrating midwives was associated with better outcomes for moms and babies, including lower rates of infant deaths. Integration involves collaboration among all kinds of midwives and doctors so that patients can easily transfer to or from a hospital. It also involves giving all midwives the authority to practice the full range of their skills, including prescribing lifesaving medication.

A by the National Academies of Sciences, Engineering, and Medicine states that data from other countries suggests home births can be as safe as hospital births for low-risk women who are part of an integrated, regulated system.

Washington state has one of the highest rates of in the U.S., according to the . Its home birth rate is consistently higher than the national rate, while its remains lower than the national average.

One in 5 women report being mistreated during maternity care, according to a . Pregnant patients tend to be more satisfied when midwives lead their care, whether at a hospital, a birth center, or home.

Hannah Haynes gave birth to her first three children in a hospital near her home in Jefferson, Georgia. During the third labor, which was induced, she received a catheter that led to a urinary tract infection and then sepsis, a life-threatening condition. She was separated from her newborn for four days while receiving treatment.

“Something has to change,” Haynes said.

Haynes regrets electing to get induced when it wasn’t medically necessary. She gave birth to her fourth child at home, with the help of a certified professional midwife she trusted. She’s pregnant with her fifth and plans to use the same midwife. She said she won’t deliver at a hospital again.

“I was a little nervous,” Haynes said, because she had heard rumors that midwives didn’t know what they were doing. But after meeting the midwife, “I just felt so confident in her.”

This <a target="_blank" href="/health-industry/certified-professional-midwives-home-births-state-licensure-lack-georgia/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

North Carolina, in late April, became the latest member of a growing group of Republican-led states to require their public health agencies to flag recipients of Medicaid to the U.S. Department of Homeland Security if their legal status is in question.

It’s a trend health policy researchers expect to spread among GOP-controlled states eager to join Trump in the federal crackdown on Medicaid fraud and illegal immigration. Already, at least four states — , , , and — have passed similar laws, and lawmakers in others, such as and , are weighing measures. In those six states, Republicans hold a power trifecta — both chambers of the legislature and the governor’s office.

“This is an issue that is very much on the political radar right now,” said , a health policy researcher at Harvard Law School.

More than 75 million people , the federal and state-run public health program for people with disabilities and low incomes, or its related Children’s Health Insurance Program, which provides low-cost coverage for people under 19. Immigrants without legal status are ineligible for Medicaid benefits, but a swath of noncitizens qualify, such as green-card holders, asylees, and refugees. A quarter of children in the U.S., most of them citizens, live with an immigrant.

Yet the new reporting laws add a layer of risk for immigrants seeking healthcare in the U.S., where the the use of to help identify and deport people.

Some of the state laws apply only to health agencies, such as in North Carolina. But the bill headed to Tennessee Gov. Bill Lee’s desk , requiring all state agencies to report people suspected of being in the U.S. without legal status. All seven state measures go beyond what’s federally required, which is to cooperate with enforcement officers by providing personal information of recipients when asked.

In Louisiana, families with mixed immigration statuses have reported that the state’s new law, enacted last year, for their kids with U.S. citizenship.

“I expect this law will lead to more families asking whether it is safe to seek healthcare, whether information can be shared with immigration authorities, and whether enrolling a child or seeking treatment could expose them to enforcement consequences,” said , a North Carolina immigration attorney.

North Carolina Republican lawmakers inserted their mandate for the state’s health department as part of a in Medicaid funds, which the legislature cut when it failed to pass a budget last year.

Starting in October, state employees will ask non-U.S. citizens receiving Medicaid for proof of their immigration standing and report those without “satisfactory” legal status to federal authorities. “This bill is designed not only to fund our critical needs today, but to begin looking at fraud, abuse issues we know exist within the system,” Republican state Rep. Donny Lambeth said during a House debate on the bill.

Immigrants than people born in the U.S., according to an analysis by the Cato Institute, a libertarian think tank, which also found noncitizens are much less likely to than citizens. State health agencies are already required to verify whether applicants’ immigration statuses .

Several Republican leaders responsible for the bill did not respond to requests for comment. North Carolina Department of Health and Human Services spokesperson Hannah Jones said the agency is still trying to understand the impact of the new law.

, about half of adults who “likely” lack legal status said someone in their family has avoided seeking medical care because they were concerned their information could draw the attention of immigration enforcement.

, a North Carolina discrimination attorney, said immigrants “in process,” or those waiting for legal authorization, generally already fear using government assistance for themselves.

“What I’ve learned from handling thousands of cases over the years is that most of the individuals who are in process pay for their own medical treatment out-of-pocket,” Rosa said.

Such policies essentially force children who are U.S. citizens to go without health coverage or hospital care, said , a researcher at Georgetown University’s Center for Children and Families.

“When you do policies that target an immigrant, you may think that you are just targeting this one person in the family, but it’s a really imprecise bomb that takes out the whole household,” Cuello said.

The use of states’ public health agencies to find immigrants who lack legal status is not the only strategy states have deployed. Some have passed laws looking to hospitals to collect and report such information. A 2023 Florida law that requires hospital staff to ask about patients’ immigration status has made noncitizens hesitant to seek care, separated families, and caused psychological distress, by the University of South Florida. Texas Gov. Greg Abbott, a Republican, issued an executive order similar to Florida’s law in 2024.

Democratic states have pushed back against Trump administration policies that mine private medical information to target immigrants, with 21 signing on to a filed last year that attempts to prevent DHS from . recipients’ identities could be shared, but medical information could not. Litigation is ongoing.

DHS did not respond to a request for comment on the record.

After he signed the bill into law, North Carolina’s Democratic governor, Josh Stein, urging Republican lawmakers to protect Medicaid coverage for nearly 27,000 pregnant women and children who are lawfully present in the country. He did not respond to questions about the provision that requires the state to report immigrants without legal status.

Polanco-Galdamez said such laws have further eroded trust in healthcare systems among underserved families.

“At the end of the day, public health systems function best when people feel safe seeking medical care,” Polanco-Galdamez said. “Policies that blur the line between healthcare access and immigration enforcement risk pushing vulnerable families further into the shadows.”

This <a target="_blank" href="/medicaid/medicaid-immigrants-deportation-state-data-legislation-north-carolina/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

Still, even with three jobs, she worries about losing her health coverage when Nebraska, on May 1, becomes the first state to require certain Medicaid enrollees to work, train, or go to school under a rule mandated by congressional Republicans’ One Big Beautiful Bill Act.

Simpson, 46, has relied on Medicaid since her divorce in 2014. None of her employers offers health coverage. She said she lost her government food assistance after technical problems caused her to miss renewing in time, and she doesn’t trust the state to implement the new work rules without problems.

“Adding more barriers won’t make the program work any better,” she said.

Nebraska Medicaid officials say they are trying to make it as easy as possible for enrollees to comply, so people don’t lose their coverage for administrative reasons, such as failing to file the proper paperwork.

Enrollees with one of thousands of health conditions detailed by the state would be exempt.

“Our top priority is making sure members clearly understand changes to the program and how to maintain their coverage,” Drew Gonshorowski, the state’s Medicaid director, said in an early-April news release.

In a brief interview with ºÚÁϳԹÏÍø News on April 28 outside the National Press Club in Washington, D.C., Centers for Medicare & Medicaid Services Administrator Mehmet Oz said he applauds Nebraska for being the first state to begin implementing the work requirements. He acknowledged that the state is still “working out the kinks,” adding that his hope is “by the end of this year they will get into a more sophisticated place.”

But health policy analysts, advocates for the poor, and health industry groups remain skeptical, fearing thousands of Nebraska Medicaid enrollees will lose coverage and, with it, their access to health services and protection from medical debt.

Hospitals also worry an increase in uninsured patients will hurt their bottom lines, said Jeremy Nordquist, the president and CEO of the Nebraska Hospital Association.

“There is a lot of concern on many different levels,” he said. Many enrollees are unaware of the changes and might not realize they have to act to stay insured, he said.

The bill President Donald Trump signed last July requires the 42 states, along with the District of Columbia, that fully or partially expanded Medicaid under the 2010 Affordable Care Act to implement a work requirement starting in 2027. The full expansion enables adults with incomes of up to 138% of the federal poverty level — amounting to $22,025 for a single person this year — to be eligible for Medicaid, the government program covering people with low incomes or disabilities.

More than 20 million people gained coverage from Medicaid through expansion, according to KFF, a health information nonprofit that includes ºÚÁϳԹÏÍø News. The Congressional Budget Office estimates 4.8 million will become uninsured over the next decade as a result of the work requirement.

Under the law, enrollees must work or volunteer at least 80 hours a month, attend school at least part-time, or participate in job training. Or they must prove they qualify for certain exemptions, such as caring for a child 13 or younger or a disabled parent, or having a health condition that prevents employment.

Some states explored implementing work rules in the years before the GOP law passed. It gave states the option to launch their programs early.

Nebraska’s Plan

In Nebraska, which is implementing the provision eight months before the law requires, about 70,000 Medicaid enrollees will need to meet the requirement, said Collin Spilinek, a spokesperson for the Nebraska Department of Health and Human Services.

About 72% of them probably won’t have to do anything to keep their coverage, because the state already knows their work or exemption status via state or national databases, Spilinek said.

To check whether enrollees meet the requirement, Nebraska and other states plan to tap into various databases, including Medicaid claims information and data controlled by credit rating agencies. Enrollees for whom Nebraska doesn’t have data will be notified and can complete an online form to confirm they meet the new rules.

While a number of states say they plan to hire extra administrative staff, the Nebraska Medicaid agency is not adding any employees to implement its work requirement.

“The fact that they say they do not need additional resources raises questions” as to whether “they will be able to pull this off without future headaches,” Nordquist said.

Proving employment status will require documentation, but Nebraska officials say they will allow enrollees to self-attest that they volunteer, go to school, or qualify for exemptions, such as for poor health or caring for a disabled parent. “Supporting documentation, such as medical records, will not be required,” Spilinek said.

That could make it easier for enrollees to get exempted under the law’s “medical frailty” exception. The long list of health conditions that can be considered for the exemption was posted last week by the state and includes many types of cancers and mental health and heart conditions.

Kelsey Arends, senior staff attorney for Nebraska Appleseed, an advocacy group, said the state’s long list of medical billing codes for conditions that would be exempted is still not long enough. She said different levels of illness severity are not included.

The exemption is crucial for Crystal Schroer, 30, who has been on Medicaid since 2022 and unemployed since 2024. She said it has been difficult to find work near her home in Kearney, Nebraska, that will allow her to take along her psychiatric service dog, Tarot, who helps her with anxiety.

“I am insanely worried,” said Schroer, who lives with a friend. “It’s made my depression way worse.”

Whether self-attestation will broadly be allowed in other states will depend on CMS’ rules for work requirements, expected to be set this summer. Oz told ºÚÁϳԹÏÍø News that “we don’t like self-attesting” and that “documentation is critical.”

Several advocacy groups had asked the state to exempt enrollees with specific conditions, including the American Diabetes Association, HIV+Hepatitis Policy Institute, and National Bleeding Disorders Foundation. Losing coverage, the groups said, would mean losing access to medications that keep people healthy and out of the hospital.

Adding a work requirement to Medicaid has been a priority for Trump since his first term. In 2018, his administration became the first to allow states to adopt the policy, but only Arkansas implemented it. In the nine months the policy was in place before a federal judge deemed it unlawful, more than 18,000 people lost coverage — nearly 1 in 4 of those subject to the requirement.

Most lost coverage not because they did not meet the requirements but for failing to correctly submit paperwork in time. 

Georgia has had a work requirement under its partial Medicaid expansion since 2023. Only about 8,000 people signed up for the coverage in its first two years — far fewer than the 25,000 that state officials predicted for the first year alone — and many have been denied benefits because of paperwork issues.

National Mandate

During the congressional debate over the law last year, Republicans pushed a work requirement for Medicaid as a way to get “able-bodied” adults benefiting from government assistance into the workforce. House Speaker Mike Johnson said it would help preserve Medicaid “for people who rightly deserve it,” not young men “sitting on their couches playing video games.”

Republicans have argued mandating employment will nudge people into finding work, leaving Medicaid to help children and people who are pregnant or have disabilities.

They were not swayed by studies showing already work or go to school or have health conditions preventing them from doing so.

A in the Annals of Internal Medicine found about one-third of adults at risk of losing coverage under the new work requirement reported that they have a physical or mental illness or disability.

“This is not a case that we have mostly healthy adults choosing not to work,” said Darshali Vyas, a study co-author and health policy researcher at Beth Israel Deaconess Medical Center in Boston. “It’s a vulnerable group, and I am not sure there are clear protections as we begin to roll out work requirements.”

In Nebraska, about two-thirds of Medicaid expansion enrollees , according to KFF. Nebraska’s unemployment rate is 3%, one of the lowest in the nation.

Andrea Skolkin, the CEO of Omaha-based One World Community Health Centers, said it’s an unsettling time for her clinic and their patients. “We are still concerned about the expanded Medicaid folks losing coverage,” she said.

About 4,000 of their 52,000 patients are covered under the Medicaid expansion, Skolkin said. She said many enrollees received letters from the state about the work requirement, but she worries many did not understand them.

Losing 10% of those patients would mean $500,000 less in revenue for the nonprofit centers, she said. To help patients, they plan to add staff to help people fill out the forms to get and maintain coverage.

Nebraska Appleseed’s Arends said she’s skeptical of the state’s promises to use automation to confirm that enrollees meet the work rules. “We remain very concerned about the early implementation,” she said.

People who lose coverage may have a harder time getting health bills covered if they reenroll in the Medicaid program, because the federal law also reduces retroactive eligibility from three months to one month for expansion enrollees.

Because many people sign up for Medicaid when seeking care for an emergency and it can take weeks or months to complete enrollment, hospitals are concerned the change will leave them to cover the costs when people lose coverage, Nordquist said.

Only two other states plan to implement the work requirement early: Montana, which plans to launch in July, and Iowa, which plans to go live in December.

Many states will be closely watching Nebraska’s implementation to see what lessons they can learn ahead of their own launches in January, said Andrea Maresca, a senior principal at Health Management Associates, a consulting firm.

States are better prepared to enact work requirements than they were when Arkansas tried in 2018, she said. After reconfirming millions of enrollees’ eligibility post-covid, they have more experience using public and private databases to automate the process and more practice communicating with enrollees, Maresca said.

Still, “it won’t be perfect,” and states will have to adapt as they go, she said.

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The plan was to begin handing out boxes of groceries at 11, but the truck delivering the food blew a tire en route. No one complained.

Perry Hall was among those waiting. His wife, Lilly Hall, volunteers with the distribution team. Perry has been dealing with a form of cancer called multiple myeloma. The Halls get by on around $1,500 a month from his Social Security benefits, plus assistance from the federal , or SNAP. But because of her age, Lilly, 59, recently became subject to new SNAP work requirements and at risk of losing her benefits.

As part of the federal One Big Beautiful Bill Act, all “able-bodied adults” 64 or younger who don’t have dependents and don’t work, volunteer, or participate in job training at least 80 hours a month are now restricted to three months of benefits every three years from SNAP, formerly known as food stamps. Previously, the federal requirement applied to those 54 or younger. The new rule, which went into effect in November, also applies to parents of children 14 or older. And it removed exemptions for veterans, people experiencing homelessness, and young adults who’ve aged out of foster care.

Proponents of work requirements argue that they incentivize people who are “work-ready” to seek and keep jobs, reducing dependence on government assistance and upholding the “.”

Rhonda Rogombé serves as health and safety net policy analyst for the . She and her colleagues have studied the effects of SNAP work rules and found that requiring recipients to work does not lower an area’s unemployment rate.

Previous work requirements were suspended nationwide during the covid pandemic and reinstated in fall 2023. The researchers found that the average number of people employed in Mingo County each month actually went down after the requirement was reimposed.

A 2018 federal research project that examined several data sources, including SNAP data from nine states, found that work requirements “have no impact on labor force participation and the number of hours worked.”

There are a number of possible explanations, Rogombé said, “but when people are hungry, they’re not able to support themselves. When people are hungry, it’s harder to focus at work. It’s harder to engage in work activity, and we think that that’s part of it.”

Jobs are scarce in this southern West Virginia county. Lilly Hall found work at a Delbarton restaurant. But it’s unpaid until a waitress position opens — enough to preserve her benefits, but far from ideal.

On that mild Wednesday in late March, House of Hope provided chicken, eggs, bread, potatoes, fresh fruit and vegetables, and milk.

Among those in line were older residents and “some young people that have lost their way and they can’t get work and they just need help,” said Timothy Treleven, who operates the pantry with his wife, Christine, and Gail Lendearo.

House of Hope’s scheduled distribution day is the last Saturday of each month — supplemented by occasional weekday Facing Hunger visits — as money from monthly checks begins to run out and cupboards go bare.

On a typical Saturday, pantry staff and volunteers hand out up to 400 boxes of food.

“It’s an honor to do this,” Lendearo said. “It’s a blessing.”

Perry Hall’s cancer is now in remission, but for a while his treatment required that he and Lilly travel back and forth, 4½ hours each way, to Morgantown. The couple’s van couldn’t make the trip, so they paid a friend for rides.

Mingo’s population is just under 22,000, down from around 27,000 in 2010. It once flourished, fueled by coal. Williamson, the county seat, was home to an opera house and businesses operated by immigrants from Italy, Russia, and Syria. The region is still referred to as “the coalfields,” but little is mined here these days. .

Rogombé and her colleagues found that Mingo County residents face significant barriers to securing what few jobs are available. These include unreported physical and mental impairments, housing insecurity, and a lack of high school diplomas and identification documents.

Filing the paperwork to receive benefits or to confirm compliance is difficult for many residents. The West Virginia Center on Budget and Policy’s research found that about 1 in 4 lack reliable internet access.

Additional changes lie ahead for the SNAP program. Currently, the federal government and the states share administrative costs equally, but in October states will assume 75% of those costs. And beginning in October 2027, they’ll be required to pay additional costs based on .

Kentucky, like West Virginia, is among the poorer states that will be most affected by the new requirements and costs. The Kentucky Center for Economic Policy estimates that with the expanded work requirements.

Jessica Klein, a researcher with the center, worries about the consequences. “We know SNAP has an impact on health, and not just because it decreases food insecurity,” she said. It worsens blood pressure rates, obesity, medication adherence, and more.

With the additional financial burden placed on states, “I think what we’ll see is some states changing rules that impact participation in order to have a smaller, more affordable program,” Klein said. “My fear is that some states will choose not to operate SNAP at all.”

In Mingo County, folks are stepping up. At least eight food pantries offer groceries to those in need.

Janet Gibson runs the Blessing Barn pantry in the Ben Creek community. “I can go from one end of the creek to the other” and tell you everyone’s name and a little something about them, she said. She takes pride in feeding her people.

Gibson said it can be hard to find even volunteer opportunities in the county, largely because of transportation challenges. A look at a local map can be misleading: A couple of dozen miles into a holler or up a ridge could take an hour or more.

“Whether you’re working full-time or not, you’re still spinning out gas to get to work,” Gibson said, “and gas ain’t cheap now.”

A single mother of three, Trista Shankle of Paducah, Kentucky, isn’t subject to the new SNAP requirements, but she worries about the fragility of the social safety net. She overcame challenges, is earning a master’s degree in social work, and works for an organization that connects community college students with benefits. Her family receives SNAP, Medicaid, housing support, and assistance from the USDA’s . If any one of those is cut, she said, she may have to drop out of school.

Shankle is certain she wouldn’t have advanced to where she is today without the benefits she and her family have received: “They bring a sense of calm and comfort. I know that my kids aren’t going to go hungry.”

The first week in April, Lilly Hall reported for work at Black Bear Trails Restaurant. She’s grateful for the opportunity. And when a waitress slot opens, “I’ll snag that position so quick it’ll make your head flip.”

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Two bills moving through the state Senate seek to prevent immigration enforcement officers from isolating patients from their loved ones and interfering with their ability to get legal help. Analyses for both bills cite reporting by ºÚÁϳԹÏÍø News that found family members and attorneys have faced extreme difficulty locating and supporting patients hospitalized while in immigration custody.

ºÚÁϳԹÏÍø News found that some hospitals have facilitated patient isolation through what are known as blackout policies, which can include registering people under pseudonyms, withholding their names from the hospital directory, and preventing staff from contacting patients’ relatives to let them know their location and condition.

A bill by Democratic state Sen. Caroline Menjivar of the San Fernando Valley, , would largely prohibit the use of blackout policies for patients in immigration custody and ensure they retain the right to have their families and others notified of their whereabouts and condition. Blackout policies would be allowed when the health care provider determines the patient is a credible risk to themself or others and the risk is documented in the patient’s medical record. Patients would also be allowed to receive visitors.

It seeks to address reports of Immigration and Customs Enforcement agents guarding patients in their hospital rooms while they undergo medical exams or talk with doctors, interfering with medical decisions, and pushing for patients to be discharged prematurely to detention facilities ill-equipped to provide follow-up care.

“These are actions that have no place in health care, and it is a clear violation of the patients’ rights,” Menjivar said.

Under Menjivar’s proposal, agents would not be allowed into the rooms of patients they bring in for care unless they can show legal authorization to be there. If agents remain in the room, staff would be required to ask them to leave during medical exams and patient care discussions. If agents refuse, health care facility staff would need to document it.

, authored by state Sen. Susan Rubio, a Democrat from the San Gabriel Valley, would require health care providers to inform staff and relevant volunteers to respond when patients want their families to know where they are, and to post a notice at facility entrances with information about visitation and access policies. The law already says patients can agree to have loved ones notified they’re in the hospital, and Rubio’s bill seeks to make sure staff and others know they can do that for patients in immigration custody.

The federal Department of Homeland Security, which oversees immigration enforcement, did not respond to a request for comment.

Both bills were passed by the Senate Health and Judiciary committees along party lines and will be heard next by the Senate Appropriations Committee.

More than 20 immigrant rights advocates and health care workers voiced support for strengthened protections for patients at a hearing last week.

“This state must do everything in its power to protect against these abuses and ensure detainees have the right to contact their loved ones when they are hospitalized and in critical conditions,” said Hector Pereyra, political manager with the Inland Coalition for Immigrant Justice.

However, representatives from the California Hospital Association and California Medical Association told lawmakers last week they had concerns that directing health care workers to document agents’ badge numbers and ask them to leave patients’ rooms could create conflict and pose a safety risk.

“While we understand that this is an important issue, we want to ensure the bill strikes the right balance and does not create conflicting or unclear obligations for hospitals and their staff and clinicians, particularly in real-time interactions with federal officers,” said Vanessa Gonzalez, a vice president of state advocacy for the hospital association.

ºÚÁϳԹÏÍø News reported that one man, 43-year-old Julio César Peña, was held at a hospital in Victorville for almost two weeks before his attorney and family found out where he was. Peña, who had terminal kidney disease, was shackled to his hospital bed, guarded by immigration agents, and told he wasn’t allowed to disclose his location, according to his wife. He then suffered a seizure that left him intubated and unconscious, but no one notified his family. Peña died Feb. 25, less than two months after he was released to go home.

Advocates for immigrants and health care workers, as well as lawmakers, fear similar incidents are happening around the state.

Menjivar said her bill “seeks to close the gap between existing law and practice by empowering health care provider entities with the tools to uphold the privacy, health, and visitation rights of a patient brought in under immigration custody.”

SB 915 would prohibit hospitals and clinics from allowing immigration officers to make medical decisions for the patient or provide interpretation. Health care facilities would be required to document and verify, “to the extent possible,” the identities of immigration officers; provide patients access to communication tools; and inform patients of their rights. They would also need to complete discharge planning that includes attempts to coordinate with any receiving facility, such as a detention center, to ensure patients receive follow-up care.

The bills come on the heels of legislation passed last year that sought to limit immigration enforcement at health care facilities, including by prohibiting medical establishments from allowing federal agents without a valid search warrant or court order into private areas. However, that bill did not address situations in which patients are already in immigration custody.

“ICE has instilled fear in our hospitals and has kept us from doing our job,” said SatKartar Khalsa, an emergency medicine resident at a safety net hospital in San Francisco who has treated detained patients and testified in support of SB 915. “This has all led to worse care for our patients and has added another layer of fear among health care workers.”

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The federal government doesn’t track how many children have entered foster care because of immigration enforcement actions, leaving it unclear how often it happens. In Oregon, as of February two children had been placed in foster care after being separated from their parents in immigration detention cases, according to Jake Sunderland, a spokesperson for the Oregon Department of Human Services.

“Before fall 2025, this simply had never happened before,” Sunderland said.

As of mid-February, nearly by Immigration and Customs Enforcement. The record 73,000 people in detention in January represented an compared with one year before. According to , parents of 11,000 children who are U.S. citizens were detained from the beginning of Trump’s term through August.

The news outlet NOTUS that at least 32 children of detained or deported parents had been placed in foster care in seven states.

Sandy Santana, executive director of Children’s Rights, a legal advocacy organization, said he thinks the actual number is much higher.

“That, to us, seems really, really low,” he said.

Separation from a parent is deeply traumatic for children and can lead to , including post-traumatic stress disorder. Prolonged, intense stress can lead to more-frequent infections in children and developmental issues. That “toxic stress” is also associated with responsible for learning and memory, according to KFF.

, and amended existing laws during Trump’s first term to allow guardians to be granted temporary parental rights for immigration enforcement reasons. Now the enforcement surge that began after Trump returned to office last year has prompted a new wave of state responses.

In New Jersey, lawmakers are considering to amend a state law that allows parents to nominate standby, or temporary, guardians in the cases of death, incapacity, or debilitation. The bill would add separation due to federal immigration enforcement as another allowable reason.

Nevada and California passed laws last year to protect families separated by immigration enforcement actions. California’s law, called the , allows parents to nominate guardians and share custodial rights, instead of having them suspended, while they’re detained. They regain their full parental rights if they are released and are able to reunite with their children.

There are significant legal barriers to reunification once a child is placed in state custody, said Juan Guzman, director of children’s court and guardianship at the Alliance for Children’s Rights, a legal advocacy organization in Los Angeles.

If a parent’s child is placed in foster care and the parent cannot participate in required court proceedings because they are in detention or have been deported, it’s less likely they will be able to reunite with their child, Guzman said.

are U.S. citizens who live with a parent or family member who does not have legal immigration status, according to research from the Brookings Institution, a Washington, D.C.-based think tank. Within that group, 2.6 million children have two parents lacking legal status.

Santana said he expects the number of family separation cases to grow as the Trump administration continues its immigration enforcement campaign, putting more children at risk of being placed in foster care.

the agency to make efforts to facilitate detained parents’ participation in family court, child welfare, or guardianship proceedings, but Santana said it’s uncertain whether ICE is complying with those rules.

ICE officials did not respond to requests for comment for this report.

Before the change in California’s law, the only way a parent could share custodial rights with another guardian was if the parent was terminally ill, Guzman said.

If parents create a preparedness plan and identify an individual to assume guardianship of their children, the state child welfare agency can begin the process of placing the children with that individual without opening a formal foster care case, he added.

While Nevada lawmakers expanded an existing guardianship law last year to include immigration enforcement, the measure requires the parents to take the additional step of filing notarized paperwork with the secretary of state’s office, said Cristian Gonzalez-Perez, an attorney at Make the Road Nevada, a nonprofit that provides resources to immigrant communities.

Gonzalez-Perez said some immigrants are still hesitant to fill out government forms, out of fear that ICE might access their information and target them. He reassures community members that the state forms are secure and can be accessed only by hospitals and courts.

The Trump administration has taken through the Centers for Medicare & Medicaid Services, the IRS, the Supplemental Nutrition Assistance Program, the Department of Housing and Urban Development, and other entities.

Gonzalez-Perez and Guzman said that not enough immigrant parents know their rights. Nominating a temporary guardian and creating a plan for their families is one way they can prevent feelings of helplessness, Gonzalez-Perez said.

“Folks don’t want to talk about it, right?” Guzman said. “The parent having to speak to a child about the possibility of separation, it’s scary. It’s not something anybody wants to do.”

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Bassan slept sitting up because it hurt to lie down, and she would flinch at the slightest touch.

“I remember thinking I was losing my mind,” said Bassan, 43. “One time I was in so much pain that I had to take off my top, and then my cat’s tail brushed against my back. I screamed.”

Mastectomies are lifesaving surgeries that remove a patient’s breasts to treat breast cancer, which affects over their lifetimes, according to the American Cancer Society. Some women also undergo mastectomies as a preventive measure after a genetic test shows they have an increased risk for breast cancer.

In the months following surgery, many women are afflicted by , or PMPS, which spans from uncomfortable to disabling and can last years.

Yet PMPS is inconsistently diagnosed and treated, leaving women like Bassan in agony as they hunt for relief and struggle to find doctors who take their pain seriously, according to a ºÚÁϳԹÏÍø News review of peer-reviewed research studies and interviews with pain specialists, surgeons, patients, and patient advocates.

Another problem is that PMPS is poorly defined, which contributes to the wide range of estimates for how common it is, reaching as high as more than 50% of mastectomy patients, according to studies. Even the low-end estimates, around 10%, would amount to tens of thousands of women.

PMPS care could improve if lawmakers pass the Advancing Women’s Health Coverage Act, which was introduced in October to ensure insurance coverage after breast cancer treatment, including preventive mastectomies. The bill, which does not mention PMPS by name, covers complications including chronic pain. More research would help, but pain research has long been fractured across several and, more recently, has been undermined by the administration of President Donald Trump, who last year proposed deep cuts to research funding at the National Institutes of Health. After Congress rejected those cuts earlier this year, the White House slowed the release of NIH grant money, hindering ongoing and future scientific research.

“I’ve known women who’ve had chronic pain — itching, burning, stabbing pain — for years after mastectomies,” said Kathy Steligo, an on breast cancer who said she has spoken with hundreds of patients. “Of all the problems, that is probably the one least talked about by surgeons.”

Four mastectomy patients interviewed by ºÚÁϳԹÏÍø News told similar stories. In separate interviews, patients said their presurgery consultations did not raise the possibility of post-mastectomy pain syndrome, although each said they had signed forms that may have disclosed the chance of this complication. All said that they felt blindsided by the chronic pain, and some said their doctors dismissed their symptoms.

“Women don’t know about this, and when they have complications, the doctors act like it is so rare, like they’re so baffled,” Bassan said. “But this is statistically predictable.”

Jennifer Drubin Clark, 42, struggled with pain after her mastectomy in 2018, and it worsened after reconstructive breast surgery in 2019.

But her surgeon seemed to focus only on the appearance of her breast implants, she said.

“I couldn’t play the piano. I wanted to blow-dry my hair, but I couldn’t hold my arm above my head for more than two seconds. I couldn’t hold my kids,” Clark said. “Everything made me cry.”

Pain Often Dismissed

Breast cancer survival rates have steadily increased since the 1980s thanks to improved cancer screening, genetic testing, better treatments, and a rise in mastectomy surgeries.

Post-mastectomy pain syndrome is a consequence of that success, according to recent research papers from anesthesiologists at Baylor University in Texas and surgeons in Chicago and New York. Both papers called for an increased focus on PMPS so that breast cancer patients can not only live longer but live well.

“In the past, when concern was predominantly on patient survival, this pain was often considered acceptable,” plastic surgeons Jonathan Bank and Maureen Beederman wrote in , adding that mastectomies and other breast surgeries “should be considered truly successful only if patients are pain-free.”

Treatment for post-mastectomy pain has a long way to go, said anesthesiologist Sean Mackey, who leads the pain medicine division at Stanford University. Mackey said this “undertreated” condition has no consistent definition for diagnosis, no standardized screening, and no treatment approved by the Food and Drug Administration.

Even the name is a misnomer, Mackey said, since the same pain can arise among women who’ve had other procedures, including lumpectomies and lymph node surgeries.

“The condition was historically dismissed,” Mackey said. “Basically women were told: ‘You’re lucky to be alive. Some pain is expected. Suck it up and deal with it.’”

“That attitude has been slow to change,” he said.

Bank, a New York surgeon who focused on post-mastectomy pain, said the pain is believed to be triggered by nerves that are severed during surgery and then left that way.

The nerves can be sutured back together to minimize pain, Bank said, but most breast surgeons haven’t been trained to do this. So it is not surprising, he said, that some patients say their surgeons were dismissive of their pain after mastectomies.

“When doctors don’t have an answer or don’t know the solution, the easiest thing to do is say there is no problem,” Bank said.

PMPS has been documented among cancer patients since the 1970s. Although the condition does not have an official definition, many researchers describe it as frequent pain in the chest, shoulder, arm, or armpit lasting at least three months after surgery.

Mastectomies intended to prevent breast cancer have become more common among women with elevated risks, including genetic mutations and a family history of the disease.

Bassan’s grandmother died of breast cancer when she was 40. After her father died of cancer in 2023, a genetic test showed that she was at risk. Grieving and afraid, Bassan sought a preventive mastectomy without hesitation, she said.

Bassan said she was also inspired by actor Angelina Jolie, who disclosed her own preventive mastectomy in a in The New York Times. Her account had such a significant impact on rates of genetic testing and preventive mastectomies that medical researchers have studied what they call the “.”

“I was really swayed by that,” Bassan said. “She made it sound, in a way, quite effortless.”

The aftermath of Bassan’s surgery was far worse than she expected. Using a computer for hours triggered paralyzing pain, so she lost her job and has been out of work for more than a year. Prescription pills dulled the pain but left her in a fog, she said. Desperate, she consulted with multiple doctors until one suggested a nerve stimulation machine, which provided fleeting relief.

About nine months after her mastectomy, a breast reconstruction surgery lessened Bassan’s pain, although she said it still returns in occasional waves. Even though her surgeries were covered by insurance, Bassan estimated her pain has cost her more than $200,000 in lost wages and drained savings.

“I did not expect to pay this price to have this surgery,” Bassan said. “I don’t know if it was worth it.”

Other women have no real choice.

No ‘Gold Standard’ Solution

Jeni Golomb, 48, was diagnosed with stage 2 cancer in both breasts in 2023 and had a double mastectomy as soon as she could.

Doctors made boilerplate disclosures of possible complications, Golomb said, but she never heard the words “post-mastectomy pain syndrome” until after she had it.

Golomb now manages her chronic pain by taking 1,500 milligrams a day of gabapentin, an anti-seizure drug that can also be used to treat nerve pain. Golomb said she expects to take the drug for years. If she misses a dose, her pain comes roaring back.

“It was the worst pain I ever felt,” Golomb said. “I labored to 10 centimeters, unmedicated, with one of my children, and that was not as bad as this. It was excruciating.”

Gabapentin has proved effective at helping some mastectomy patients with stubborn pain, while others have responded to electrodes implanted in their spinal column, according to , published in 2024.

But that study also said there is “no current gold standard” for how to treat post-mastectomy pain and a scarcity of high-level evidence for what treatments are effective.

Baylor anesthesiologist Krishna Shah, who co-authored the report, said many patients eventually find a helpful treatment, but it often takes “a bit of trial and error” to identify what works for each.

And sometimes they never find it.

Susan Dishell, 67, said that after her 2017 mastectomy for breast cancer and reconstruction surgery, she struggled for five years with pain in both shoulders, plus a burning sensation that her medical records identified as nerve pain.

Another surgery swapped out her breast implants to erase her shoulder pain in 2022, Dishell said, but doctors warned her then that her other pain was unlikely to improve.

Since then, she has tried prescription drugs, steroid injections, CBD oil, acupuncture, physical therapy, and chiropractor treatments.

None of it worked, she said, so she stopped trying.

“I have not slept through the night since I’ve had this,” Dishell said. “But it’s OK. It’s not the most terrible price to pay to not have breast cancer.”

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