The federal government doesn’t track what happens to children after their parents are detained or deported, and state data varies. Independent news reports are scarce and likely undercount the issue. But there’s evidence that in many states some of the children are being placed in foster care.Ìý

In Oregon, for example, there have been at least two cases in which children who were separated from their parents were placed into foster care by the state. Jake Sunderland, press secretary for the state Department of Human Services, said that before last fall, this “simply had never happened before.”Ìý

Separation from a parent can be deeply traumatic for children and lead to a broad range of , including post-traumatic stress disorder. Some states have responded by updating their temporary guardianship laws to help immigrant parents better prepare care for their children in the event of their detention or deportation.

Lawmakers in New Jersey are to allow parents to nominate standby, or temporary, guardians in the event of death, incapacity, or debilitation. The proposal adds separation caused by federal immigration enforcement as another allowable reason.Ìý

Nevada and California passed similar laws last year.Ìý

Yet some parents are hesitant to participate, said Cristian Gonzalez-Perez, an attorney at Make the Road Nevada, a nonprofit that provides resources to immigrant communities. The hesitancy is out of fear that Immigration and Customs Enforcement agents could access their personal information and use it to target them for detention or deportation.Ìý

My colleagues Claudia Boyd-Barrett, Renuka Rayasam, and Amanda Seitz reported on a case in which ICE used data from the Department of Health and Human Services’ Office of Refugee Resettlement to detain parents under the impression they were reuniting with their children, highlighting the precarious situation for immigrant parents.Ìý

Additionally, ICE detention makes it difficult to reunite parents with their children if they’ve been placed in foster care because reunification often requires court-ordered programs, said Juan Guzman, director of children’s court and guardianship at the Alliance for Children’s Rights, a legal advocacy organization in Los Angeles. Nominating a guardian is one way to ease immigrants’ feelings of helplessness when facing the threat of detention or deportation, Gonzalez-Perez said.

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El gobierno federal no lleva un registro de cuántos niños han ingresado a este sistema como consecuencia de operativos de control migratorio, lo que dificulta saber con qué frecuencia ocurre.

En Oregon, hasta febrero, dos niños habían sido ubicados en hogares temporales luego de ser separados de sus padres en casos de detención migratoria, según Jake Sunderland, vocero del Departamento de Servicios Humanos del estado.

“Antes del otoño de 2025, esto nunca había ocurrido”, aseguró.

Hasta mediados de febrero, casi por el Servicio de Inmigración y Control de Aduanas (ICE, por sus siglas en inglés).

El récord de 73.000 personas detenidas en enero representó un comparado con el año anterior. Según una , hasta agosto de 2025, padres de 11.000 niños con ciudadanía estadounidense habían sido detenidos desde el inicio del mandato de Trump.

El medio NOTUS que por lo menos 32 niños de padres detenidos o deportados habían sido colocados en hogares temporales en siete estados.

Sandy Santana, director ejecutivo de Children’s Rights, una organización de defensa legal, dijo que sospechan que el número real es mucho mayor.

“Ese número nos parece realmente muy bajo”, dijo.

La separación de sus padres es profundamente traumática para los niños y suele provocar , incluido el trastorno de estrés postraumático. El estrés prolongado e intenso también puede causar infecciones más frecuentes en los niños y problemas en el desarrollo. Ese “estrés tóxico” también se asocia con daños en áreas del cerebro responsables del aprendizaje y la memoria, , una organización sin fines de lucro dedicada a la información en salud que incluye a Ñî¹óåú´«Ã½Ò•îl Health News.

Durante el primer mandato de Trump, . y modificaron algunas leyes para permitir que tutores recibieran derechos parentales temporales en casos relacionados con migración. Ahora, tras el regreso de Trump al poder el año pasado, el aumento en los controles migratorios está impulsando una nueva ola de respuestas estatales.

En Nueva Jersey, legisladores están considerando un proyecto para modificar estatal que permite que los padres designen tutores temporales para casos de muerte o incapacidad. La nueva versión agregaría como otra razón válida la separación por control migratorio federal.

El año pasado, Nevada y California aprobaron leyes para proteger a las familias separadas por acciones de control migratorio. La ley de California, llamada Ley del Plan de Preparación Familiar (), permite que los padres designen tutores y compartan derechos de custodia, en lugar de que sus derechos se suspendan mientras están detenidos. Si son liberados y pueden reunirse con sus hijos, recuperan sus derechos parentales completos.

Existen importantes obstáculos legales para la reunificación familiar una vez que un niño entra bajo custodia estatal, explicó Juan Guzman, director del tribunal de menores y tutela en Alliance for Children’s Rights, una organización de defensa legal en Los Ángeles.

Si el niño es colocado en cuidado temporal y ni el padre ni la madre pueden participar en los procesos judiciales requeridos porque están detenidos o han sido deportados, es menos probable que puedan volver a reunirse con su hijo, afirmó Guzman.

Se estima que que son ciudadanos estadounidenses viven con un padre u otro familiar que no tiene estatus migratorio legal, según investigaciones de Brookings Institution, un centro de estudios en Washington, D.C. Dentro de ese grupo, 2,6 millones de niños tienen a ambos padres sin estatus legal.

Santana dijo que es probable que el número de casos de separación familiar aumente a medida que el gobierno de Trump avance con su campaña migratoria. Por lo tanto, más niños corren el riesgo de terminar en el sistema de cuidado temporal.

Las exigen que la agencia se esfuerce en facilitar la participación de los padres detenidos en los procedimientos de los tribunales de familia, de bienestar infantil o de tutela, pero Santana indicó que no está claro que el ICE esté cumpliendo con estas normas.

Los funcionarios de ICE no respondieron a las solicitudes de comentarios para este artículo.

Antes de que cambiara la ley de California, la única razón por la que un padre podía compartir derechos de custodia con otro tutor era si tenía una enfermedad terminal, contó Guzman.

Ahora, si los padres preparan un plan con anticipación y designan a alguien de confianza que pueda hacerse cargo de sus hijos si llegara a ser necesario, la agencia estatal de bienestar infantil puede iniciar el proceso para entregar a los niños a esa persona sin tener que abrir un caso formal de cuidado temporal, agregó.

Si bien el año pasado los legisladores de Nevada ampliaron una ley de tutela existente para incluir la aplicación de las leyes de inmigración, la medida exige a los padres dar el paso adicional de presentar documentación notariada ante la oficina del Secretario de Estado, señaló Cristian González-Pérez, abogado de Make the Road Nevada, una organización sin fines de lucro que brinda recursos a las comunidades inmigrantes.

González-Pérez señaló que algunos inmigrantes dudan en completar formularios gubernamentales por temor a que el ICE pueda acceder a esa información y los persiga. Él les asegura a los miembros de la comunidad que los formularios estatales son confidenciales y solo pueden ser consultados por hospitales y tribunales.

El gobierno de Trump ha tomado para acceder a información sensible a través de los Centros de Servicios de Medicare y Medicaid, el Servicio de Impuestos Internos (IRS), el Programa de Asistencia Nutricional Suplementaria (SNAP), el Departamento de Vivienda y Desarrollo Urbano y otras entidades.

González-Pérez y Guzmán consideran que muchos padres inmigrantes no conocen sus derechos. Designar un tutor temporal y crear un plan familiar es una forma de no sentirse impotentes, afirmó González-Pérez.

“La gente no quiere hablar de esa cuestión”, reflexionó Guzman. “Que un padre tenga que hablar con un niño sobre la posibilidad de separarse da miedo. No es algo que nadie quiera hacer”, concluyó.

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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 Ñî¹óåú´«Ã½Ò•îl Health 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 coverageÌýafter 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 Ñî¹óåú´«Ã½Ò•îl Health 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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State governments rely on such companies to design and operate computer systems that assess whether low-income people qualify for Medicaid or food aid through the Supplemental Nutrition Assistance Program, commonly known as food stamps. Those state systems have a history of errors that can cut off benefits to eligible people, a Ñî¹óåú´«Ã½Ò•îl Health News investigation showed.

States are now racing to update their eligibility systems to adhere to President Donald Trump’s sweeping tax-and-spending law. The changes will add red tape and restrictions. They are coming at a steep price ― both in the cost to taxpayers and coverage losses ― according to state documents obtained by Ñî¹óåú´«Ã½Ò•îl Health News and interviews.

The documents showÌýgovernment agenciesÌýwill spend millionsÌýto saveÌýconsiderablyÌýmoreÌýbyÌýremovingÌýpeople fromÌýhealth benefits.ÌýWhile statesÌýsignÌýeligibility system contracts with companiesÌýandÌýwork with them to manageÌýupdates, the federal governmentÌýfootsÌýmost of the bill.

The law’s Medicaid policies will causeÌýÌýtoÌýbecome uninsuredÌýby 2034, according to the nonpartisan Congressional Budget Office.ÌýRoughlyÌýÌýwill loseÌýaccess toÌýmonthly cashÌýassistanceÌýforÌýfood, including those with children.Ìý

In five statesÌýalone,ÌýÌýfor state officialsÌýand reviewed by Ñî¹óåú´«Ã½Ò•îl Health NewsÌýshow that changesÌýwill cost at least $45.6ÌýmillionÌýcombined.Ìý

The lawÌýrequires most statesÌýtoÌýtieÌýMedicaid coverageÌýfor some adultsÌýtoÌýhavingÌýaÌýjob,ÌýandÌýimposes other restrictions that will make it harder forÌýpeopleÌýwith low incomesÌýto stay enrolled.ÌýSNAP restrictions began to take effect in 2025. Major Medicaid provisionsÌýbeginÌýlater this year.Ìý

DocumentsÌýprepared by consulting company DeloitteÌýestimateÌýthat a pair ofÌýcomputer systemÌýchangesÌýforÌýMedicaid work requirementsÌýin WisconsinÌýwillÌýÌý. Two other changesÌýrelatedÌýto the state’s SNAP program will cost an additional $4.2Ìýmillion, according to the documents, which for the Wisconsin Department of Health Services.

In Iowa, changes to its Medicaid system are expected to cost at least $20 million, , a consulting company thatÌýoperatesÌýthe state’sÌýeligibility system.Ìý

OptumÌý—ÌýwhichÌýoperatesÌýthe platform Vermont residents useÌýfor Medicaid and marketplaceÌýhealthÌýplans under the Affordable Care ActÌý—ÌýÌýÌýÌýÌýtoÌýevaluate andÌýincorporateÌýnewÌýhealthÌýcoverage restrictions.Ìý

Initial changes in Kentucky, which has had a contract with Deloitte since 2012,ÌýÌýÌýÌýÌý. And in Illinois,ÌýÌýwill cost at least $12 million.

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More changes lie ahead that make it important for those getting subsidies in 2026 to track their income and take steps to protect against that kind of financial hit.

First, the basics of how the subsidies work.

Enrollees pay a percentage of their household income toward their health insurance premiums based on a sliding scale, ranging in 2025 from nothing for very low-income people to 8.5% at higher income levels. Subsidies, usually paid directly to insurers, cover the rest.

The income calculation done during open enrollment is an estimate of what a household thinks it will earn in the coming year. At tax time, ACA enrollees must reconcile what they received in subsidies with what they actually earned. If their income rose, they might owe some of the subsidies back.

But don’t skip filing! People who get ACA subsidies must file tax returns no matter their income, and that is becoming even more important: The Trump administration people from subsidy eligibility if they have gone two consecutive years without filing, and it is proposing lowering that to one year.

Beware Surprise Tax Bills

All enrollees who received subsidies for ACA coverage in 2025 — — need to include a special form, the , with their tax filings. That form is used to reconcile a person’s actual income with the amount of subsidies they received, information the IRS mails them on a separate, . Subsidy amounts are based in part on the income projections they made when they enrolled in their ACA plans.

And that can lead to surprises. Some may find they get money back if their income was less than they estimated. But, if their income went above their initial or updated estimates, they probably qualify for less in assistance and will have to pay money back.

Groups that help people file their taxes say it’s not always easy for people to accurately estimate their income for the year ahead, especially those who run their own businesses, work multiple jobs, or have work that comes with varying hours.

Clients will say, “I can make anywhere between $20,000 and $45,000 next year. I just don’t know,” said Katie Alexander, director of training and volunteers for the health and economic opportunity program at Pisgah Legal Services, a western North Carolina nonprofit that provides free tax and health insurance help to people with low incomes.

Still, for taxes being filed now for the 2025 tax year, on what many people must repay.

That cap is $375 for a single individual who earned less than $31,300 in 2025, or . The maximum owed under that sliding scale for people whose income is on the higher end of the range is $1,625 for an individual and $3,250 for a family.

There is no repayment cap for people earning more than four times the federal poverty level — totaling $62,600 in 2025 for an individual or $106,600 for a family of three — so they could owe back all amounts that exceeded their eligibility.

“The amount is just so staggering for folks,” Alexander said.

One woman whom Pisgah staff helped with pulling together her taxes for 2025 made just above $50,000, which was more than she initially estimated. Her repayment was capped at $1,625, Alexander said. Without that cap, she would have owed $4,000, a substantial chunk of her annual income.

Plan Ahead: The Rules Will Be Tougher Next Tax Season

Congressional Republicans’ One Big Beautiful Bill Act, signed into law by President Donald Trump last summer, . That means come next year’s tax season, there will be no sliding-scale limit to how much people could owe back in subsidies for 2026 if their income exceeds their projections.

“That’s just going to be absolutely devastating,” Alexander said.

There are at least two other things to keep in mind, both stemming from covid-era enhanced tax credits, which expired at the end of last year because Congress did not extend them. One is that the amount of household income people must pay toward their premiums this year before subsidies kick in has risen to just over 2% on the low end of the income scale and up to nearly 10% for higher-income earners.

The second is that households earning over four times the federal poverty level no longer qualify for ACA subsidies.

The biggest financial hit could be felt by enrollees whose income rises enough during the year to exceed four times the poverty level. In that case, they would owe back all the subsidies they receive in 2026.

And that could be a lot.

In 2025, for example, the average monthly premium for ACA coverage was $619, but the average enrollee received subsidies worth enough to offset all but $74 of that, according to the .

There’s another twist for some. Because the enhanced credits were not extended, people are paying, on average, double the amount toward their premiums this year, so they may be looking to add to their incomes to cover the cost. A found that 43% of people who remained enrolled in coverage this year are planning to work more hours or get additional work to cover those costs.

“That makes sense, but it can also present a risk of being eligible for less subsidy money than they thought, or even mean they would have to repay the entire tax credit,” said Cynthia Cox, senior vice president and director of the Program on the ACA at KFF, a health information nonprofit that includes Ñî¹óåú´«Ã½Ò•îl Health News.

People can update their projected income at the marketplace website as it changes during the year.

Pisgah staff are calling people they’ve worked with and saying, “Please, please, please, if your income changes, call us so we can adjust your income through the marketplace,” Alexander said.

As much as possible, keep track of income during the year. This isn’t easy, especially for workers who don’t have a job with regular paychecks.

“If you’re meeting with a CPA to talk about taxes, have a conversation to make sure you’re making enough money to afford your costs, but not too much to lose eligibility for a subsidy,” Cox said. “Contributing toward a retirement plan or a health savings account can lower part of your income that counts toward subsidy eligibility.”

Others might choose to dial back their work hours or forgo a new client contract.

“If taking that extra shift means putting you over the line of 400% of the federal poverty level and that’s going to cost you $10,000 in repayments, maybe don’t take that shift,” said Jason Levitis, a senior fellow at the Urban Institute who follows ACA and tax policy issues.

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Six months after a West Virginia man died following a protracted battle with his health insurer over doctor-recommended cancer care, the state’s Republican governor signed a bill intended to curb the harm of insurance denials.

West Virginia’s Public Employees Insurance Agency enrolls nearly 215,000 people — state workers, as well as their spouses and dependents. The new law, which will take effect June 10, will allow plan members who have been approved for a course of treatment to pursue an alternative, medically appropriate treatment of equal or lesser value without the need for another approval from the state-based health plan.

“This legislation is rooted in a simple principle: if a treatment has already been approved, patients should be able to pursue a medically appropriate alternative without being forced to start the process over again — especially when it does not cost more,” Gov. Patrick Morrisey said in a statement after signing the bill into law on March 31.

“This is about common sense, compassion, and trusting patients and their doctors to make the best decisions for their care,” he said.

Delegate Laura Kimble, the Republican from Harrison County who introduced the legislation, told Ñî¹óåú´«Ã½Ò•îl Health News the measure offers “a rational solution” for patients facing “the most irrational and chaotic time of their lives.”

From Arizona to Rhode Island, at least half of all state legislatures have taken up bills this year related to prior authorization, a process that requires patients or their medical team to seek approval from an insurer before proceeding with care. These state efforts come as patients across the country await relief from prior authorization hurdles, as promised by dozens of major health insurers in a pledge announced by the Trump administration last year.

The West Virginia law was inspired by Eric Tennant, a coal-mining safety instructor from Bridgeport who died on Sept. 17 at age 58. In early 2025, the Public Employees Insurance Agency of a $50,000 noninvasive cancer treatment, called histotripsy, that would have used ultrasound waves to target, and potentially shrink, the largest tumor in his liver. His family didn’t expect the procedure to eradicate the cancer, but they hoped it would buy him more time and improve his quality of life. The insurer said the procedure wasn’t medically necessary and that it was considered “experimental and investigational.”

Becky Tennant, Eric’s widow, told members of a West Virginia House committee in late February that she submitted medical records, expert opinions, and data as part of several attempts to appeal the denial. She also reached out to “almost every one of our state representatives,” asking for help.

Nothing worked, she told lawmakers, until Ñî¹óåú´«Ã½Ò•îl Health News and NBC News got involved and posed questions to the Public Employees Insurance Agency about Eric’s case. Only then did the insurer reverse its decision and approve histotripsy, Tennant said.

“But by then, the delay had already done its damage,” she said.

Within one week of the reversal in late May, Eric Tennant was hospitalized. His health continued to decline, and by midsummer he was no longer considered a suitable candidate for the procedure. “The insurance company’s decision did not simply delay care. It closed doors,” his wife said.

Had the new law been in effect, Kimble said, Tennant could have undergone histotripsy without preapproval, because it was a less expensive alternative to chemotherapy, which his insurer had already authorized. The bill was passed unanimously by the state legislature in March.

U.S. health insurers argue that most prior authorization requests are quickly, if not instantly, approved. AHIP, the health insurance industry trade group, says prior authorization acts as an important guardrail in preventing potential harm to patients and reducing unnecessary health care costs. But denials and delays tend to affect patients who need expensive, time-sensitive care, .

The practice has come under intense scrutiny in recent years, particularly after the in New York City in late 2024. Americans rank prior authorization as their biggest burden when it comes to getting health care, according to a by KFF, a health information nonprofit that includes Ñî¹óåú´«Ã½Ò•îl Health News.

Samantha Knapp, a spokesperson for the West Virginia Department of Administration, would not answer questions about the law’s financial impact on the state. “We prefer to avoid any speculation at this time regarding potential impact or actions,” Knapp said.

In a fiscal note attached to the bill, Jason Haught, the Public Employees Insurance Agency’s chief financial officer, said the law would cost the agency an estimated $13 million annually and “cause member disruption.”

West Virginia isn’t an outlier in targeting prior authorization. By late 2025, 48 other states, in addition to the District of Columbia and Puerto Rico, already had some form of a prior authorization law — or laws — on the books, according to a by the National Association of Insurance Commissioners.

Many states have set up “gold carding” programs, which allow physicians with a track record of approvals to bypass prior authorization requirements. Some states establish a maximum number of days insurance companies are allowed to respond to requests, while others prohibit insurance companies from issuing retrospective denials after a service has already been preauthorized. There are also a crop of new state laws seeking to regulate the use of artificial intelligence in prior authorization decision-making.

Meanwhile, prior authorization bills introduced this year across the country, including in Kentucky, Missouri, and New Jersey, have been supported by politicians from both parties.

“Republicans in conservative states see health care as a vulnerability for the midterm elections, and so, unsurprisingly, you’ll see some action on this,” said Robert Hartwig, a clinical associate professor of risk management, insurance, and finance at the University of South Carolina. “They realize that they’re not really going to get much action at the federal level given the degree of gridlock we’ve already seen.”

Last summer, the Trump administration announced a pledge signed by dozens of health insurers vowing to reform prior authorization. The insurers promised to reduce the scope of claims that require preapproval, decrease wait times, and communicate with patients in clear language when denying a request.

Consumers, patient advocates, and medical providers that companies will follow through on their promises.

Becky Tennant is skeptical, too. That’s why she advocated for the West Virginia bill.

“Families should not have to beg, appeal, or go public just to access time-sensitive care,” she told lawmakers. Tennant, who sees the bill’s passage as bittersweet, said she thought her husband would have been proud.

During Eric’s final hospital stay, Tennant recalled, right before he was discharged to home hospice care, she asked him whether he wanted her to keep fighting to change the state agency’s prior authorization process.

“‘Well, you need to at least try to change it,’” she recalled her husband saying. “‘Because it’s not fair.’”

“I told him I would keep trying,” she said, “at least for a while. And so I am keeping that promise to him.”

NBC News health and medical unit producer Jason Kane and correspondent Erin McLaughlin contributed to this report.

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La legislación prohibiría que los gobiernos estatales y locales obligaran a estos centros a practicar abortos. También a derivar o informar a pacientes sobre estos servicios o a explicar opciones de anticoncepción. Y permitiría que estas organizaciones demandaran a la entidad gubernamental que violara la ley.

Los legisladores de Wyoming el 4 de marzo una ley llamada Center Autonomy and Rights of Expression Act (). Propuestas similares se presentaron este año en y . En una norma de este tipo ya fue promulgada en 2025.

La Ley CARE es una “legislación modelo” creada por la , un grupo de defensa legal cristiano conservador y antiabortista.

Una legislación similar, la , fue presentada en el Congreso el año pasado, pero no ha avanzado fuera del Comité de Energía y Comercio de la Cámara de Representantes.

El proyecto de ley de Wyoming considera que los centros de embarazo, muchos vinculados a organizaciones religiosas, necesitan protección legal porque enfrentan “ataques sin precedentes” después de que la Corte Suprema anulara Roe vs. Wade, la decisión judicial de 1973 que protegía el derecho al aborto en todo el país. Según el texto, varias legislaturas estatales han presentado proyectos de ley que de libertad de expresión y asociación de estos centros.

Sin embargo, quienes los critican afirman que los centros de crisis de embarazo se presentan falsamente ante los consumidores como clínicas médicas, aunque no están sujetos a las leyes estatales y federales que regulan los centros de salud y protegen a los pacientes.

“En todo el país, los funcionarios del gobierno apuntan cada vez más, cada vez más, contra los centros de atención para embarazadas”, argumentó Valerie Berry, directora ejecutiva de en Cheyenne, durante una audiencia en la Legislatura sobre el proyecto de ley de Wyoming. “Esta legislación no busca crear división. Busca proteger las libertades constitucionales, la libertad de expresión y la libertad de conciencia”.

Por su parte, durante la audiencia, el expresó su preocupación por otorgar a los centros de embarazo un nivel de protección que otras empresas privadas no tienen.

“Ya cuentan con medidas de protección”, reflexionó. “Lo que me preocupa es que se les otorguen medidas de protección adicionales”.

En 2022, Wellspring Health Access, la única clínica en Wyoming que realiza abortos, en un ataque intencional.

“Nosotros somos los que proporcionamos información precisa sobre salud reproductiva y por eso sufrimos las consecuencias”, dijo a Ñî¹óåú´«Ã½Ò•îl Health News Julie Burkhart, presidenta y fundadora de Wellspring Health Access.

, profesora de la Facultad de Derecho de la Universidad de California en Davis, dijo que la legislación propuesta eximiría a los centros de crisis de embarazo de tener que cumplir con los estándares a los que están obligadas las organizaciones médicas. También borraría la línea entre la defensa de una causa y la práctica médica, agregó. Y agregó que iniciativas de este tipo pueden ofrecer a los republicanos un mensaje de campaña potencialmente útil de cara a las elecciones legislativas de mitad de mandato.

“El Partido Republicano necesita una estrategia de comunicación para mostrar que se preocupa por las mujeres, incluso si prohíbe el aborto y aunque no quiera destinar recursos estatales a ayudar a las personas antes y después del embarazo”, explicó Ziegler. “La estrategia consiste en delegar eso en los centros de asesoramiento sobre el embarazo, lo que, por supuesto, aumenta el incentivo para protegerlos”.

Legislación modelo

La Alliance Defending Freedom es el mismo grupo que , que desde 1973 protegía el derecho al aborto a nivel nacional. El grupo redactó la , una legislación modelo para prohibir el aborto desde las 15 semanas, que fue la base de una ley de Mississippi de 2018 que condujo al caso Dobbs v. Jackson Women’s Health Organization a partir de la cual la Corte Suprema anuló el fallo Roe.

La alianza dijo que sus abogados no estaban disponibles para comentar la estrategia de la organización respecto al CARE Act. En el proyecto de ley, el grupo afirmó que los esfuerzos federales, estatales y locales están apuntando contra los centros de atención del embarazo en un “claro intento de socavar y obstaculizar” su trabajo y cerrarlos.

En los últimos años, algunos han sido blanco de vandalismo y amenazas.

Pero los ataques que la legislación modelo se propone abordar principalmente son los esfuerzos legales y regulatorios de algunos estados que buscan mayor supervisión de estos centros, incluida una ley de California que exige que informen claramente a los pacientes sobre sus servicios. Esa ley fue anulada cuando la Corte Suprema falló a favor de los centros de crisis, avalando el argumento de que la norma violaba sus derechos de la Primera Enmienda.

Este año, la Corte Suprema que decidirá si los estados pueden citar a estas organizaciones para obtener información sobre donantes y datos internos.

De todos modos, es poco probable que los centros de crisis de embarazo enfrenten ese tipo de medidas regulatorias en los estados conservadores donde se está considerando esta legislación. Un legislador de Wyoming lo reconoció durante la audiencia del comité en febrero.

Diferentes servicios

En esa misma audiencia, quien encabeza el comité que patrocina el proyecto de ley, presentó la medida como “muy importante, especialmente con nuestro ‘desierto de maternidad’”, refiriéndose a la falta de acceso a servicios de atención de salud materna.

Algunos centros de crisis de embarazo pueden contar con pocos profesionales con licencia, pero son la minoría. Muchos ofrecen recursos gratuitos, como pañales, ropa para bebé y otros artículos, a veces a cambio de aceptar asesorías o clases de crianza.

Las clínicas de Planned Parenthood, en contraste, ofrecen una variedad de servicios de salud, como pruebas y tratamiento para infecciones de transmisión sexual, atención primaria y exámenes para detectar cáncer cervical. Además, están reguladas como organizaciones con licencia médica.

Desde que el fallo Roe fue anulado, el movimiento por el derecho al aborto ha enfrentado desafíos importantes. La ley de los republicanos, One Big Beautiful Bill Act, que el presidente Donald Trump promulgó el verano pasado, a proveedores de abortos. Esa medida contribuyó a que Planned Parenthood tuviera que cerrar el año pasado.

Para 2024, operaban en todo el país, según un mapa creado por investigadores de la Universidad de Georgia, en comparación con las que ofrecían abortos a finales de 2025.

, una organización de investigación afiliada a la organización contra el aborto SBA Pro-Life America, ha sugerido que los centros de embarazo podrían ayudar a llenar el vacío dejado por el cierre de clínicas de Planned Parenthood.

Ziegler aseguró que eso dejaría a las pacientes expuestas a riesgos médicos.

El creciente poder de los centros

Las iniciativas anteriores en , Colorado y Vermont para regular los centros de crisis de embarazo surgieron a raíz de la preocupación por denuncias de , y dudas sobre la .

En 2024, un en cinco estados que investigaran si los centros estaban engañando a las pacientes haciéndoles creer que su información personal estaba protegida bajo la Health Insurance Portability and Accountability Act (HIPAA), y que averiguaranÌý cómo estaban utilizando la información de los pacientes.

Los tribunales, incluida la Corte Suprema, han fallado con frecuencia que argumentan que estos intentos de regulación violan sus derechos de la Primera Enmienda a la libertad de expresión y la libertad religiosa.

Los centros de crisis para embarazadas también han recibido una avalancha de fondos desde que se revocó Roe.

Al menos incluidos centros de crisis de embarazo, según el Lozier Institute.

Seis estados distribuyen una parte de sus fondos federales del programa Temporary Assistance for Needy Families (TANF) —pagos en efectivo destinados a familias de bajos ingresos con niños— a centros de crisis de embarazo. Texas, Florida, Tennessee y Oklahoma han proporcionado decenas de millones de dólares para estas organizaciones.

Un análisis encontró que los centros de crisis de embarazo también recibieron entre 2017 y 2023, incluidos fondos del paquete de ayuda de 2020 promulgado como ley durante el primer mandato de Trump en medio de la pandemia de covid.

A pesar de los desafíos que enfrentan las clínicas que ofrecen abortos, Burkhart, directora del centro Wellspring en Wyoming, dijo que es importante seguir garantizando la atención a quienes la necesitan. Ella ha ayudado a abrir clínicas en zonas rurales de otros estados conservadores y ha señalado que esas clínicas siguen recibiendo pacientes.

“Eso me demuestra que, sin importar tu religión o tu partido político, hay momentos en la vida de las personas en los que necesitan atención de salud reproductiva brindada por profesionales calificados”, dijo. “Eso incluye el aborto”.

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The legislation would prohibit state and local governments from requiring crisis pregnancy centers to perform abortions, provide referrals for abortion services, or inform patients about such services or contraception options. It also would allow crisis pregnancy centers to sue the violating government entity.

Wyoming lawmakers of the Center Autonomy and Rights of Expression Act, or , on March 4. Other versions have advanced in and this year. One was in 2025. The CARE Act is “model legislation” created by the , an anti-abortion, conservative Christian legal advocacy group.

A similar proposal, the , was introduced in Congress last year but hasn’t moved out of the House Energy and Commerce Committee.

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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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