But Republican lawmakers in some states think the new rules — part of the GOP’s One Big Beautiful Bill Act, signed last July by President Donald Trump — don’t go far enough.

Indiana is leading that charge, with a new law that requires applicants to prove they’ve been working or participating in a similar activity for three consecutive months to get benefits.

Meanwhile, residents in many other states will have to show they’ve been working just one month, the least cumbersome option under Trump’s signature tax-and-domestic-spending law. It instructs states to decide whether to require one, two, or three months of work history.

As in Indiana, Republican Idaho lawmakers approved a three-month requirement, and the state’s governor signed the bill into law on April 10.

The efforts, along with similar moves in Arizona, Missouri, and Kentucky, are aimed at restricting flexibility to implement the federal law at the state level.

“Normally, you would not see state legislators weighing in on these decisions,” said Lucy Dagneau, a senior official with the American Cancer Society’s advocacy arm.

The nonpartisan Congressional Budget Office estimated 18.5 million adults will be subject to the new rules, which will be enforced across 42 states and the District of Columbia. In Indiana, work rules will target about 33% of the state’s Medicaid population. The rules generally wouldn’t apply to children, people 65 or older, or people with disabilities or serious health issues.

Typically, state administrators — not lawmakers — detail how they plan to comply with new federal standards, and they often look to federal regulators for guidance. But officials at the Centers for Medicare & Medicaid Services have yet to tell states how to comply with many aspects of the sweeping budget law, leaving state lawmakers to intervene.

Gov. Mike Braun, a Republican, signed the Indiana bill into law on March 4, making his state the first to set the Medicaid work requirement at three months — the longest period allowed under the federal law.

Republican state Sen. Chris Garten introduced a bill in January, saying it was needed to “align” state law with the new federal Medicaid rules. He also pitched the bill as a way to crack down on “waste, fraud, and abuse” in public programs.

When ineligible people get enrolled, it robs “the truly vulnerable Hoosier who actually needs the help,” Garten said during a January committee hearing.

Democratic state Sen. Fady Qaddoura expressed skepticism during the hearing and questioned the necessity of the legislation. Qaddoura asked Indiana Family and Social Services Administration Secretary Mitch Roob to provide an estimate of the number of ineligible people who enrolled in Medicaid in the state.

“I think very few,” Roob replied. “It’ll never be none.”

After hearing Roob’s answer, Qaddoura said there is no evidence of a widespread problem in Indiana. He accused Republicans of using waste, fraud, and abuse as justification to deny health benefits and food aid to vulnerable Hoosiers.

Garten later called Qaddoura’s accusation a “fundamental mischaracterization” of the bill.

Republicans have said imposing these limits protects the Medicaid program’s longevity.

“We believe in a safety net for our most vulnerable, not a hammock for able-bodied adults that choose not to work,” Garten said. “By tightening these screws, we ensure that our safety net remains sustainable.”

Indiana’s Medicaid enrollment is expected to decrease because of Garten’s legislation, according to an analysis from Indiana’s nonpartisan Legislative Services Agency.

Medicaid helps keep people healthy, so they can continue to work, said Adam Mueller, executive director of the Indiana Justice Project, a nonpartisan legal advocacy organization focusing on health, housing, and food insecurity.

Mueller worries that people will struggle to prove their work history, especially those with nontraditional jobs.

“If the point is to get people engaged, the one month would do it,” Mueller said.

Ultimately, he fears the law will harm Hoosiers with the greatest need for assistance. “They’re going to get tripped up by the bureaucratic hurdles.”

An analysis by the Center on Budget and Policy Priorities predicted that work rules will and that how states choose to implement the rules will “significantly affect the number of people who lose coverage.” State policy decisions will determine just “how intense the burden is,” the left-leaning think tank found, and opting for a shorter look-back period “will enable more people to enroll.”

Lawmakers in multiple states considered limits. And the same right-leaning lobbying group, the Foundation for Government Accountability, testified in favor of these measures in Arizona, Indiana, and Missouri.

In Missouri, FGA lobbyist James Harris said the measure intends to “move people from dependency and give them back that dignity and pride of work.”

Missouri state Rep. Darin Chappell proposed requiring a three-month look-back period like the measure in Indiana. But the latest version of the bill he sponsored would require applicants to show they were working for only one month before enrolling.

Chappell, a Republican, said his initiative would encourage a “working mindset.”

Anna Meyer, owner of a small bakery in Columbia, Missouri, said the implication is that she and others on Medicaid are lazy. “I have been working since I was 15 years old,” she said. “I’m 43 now.”

Meyer, who voiced her opposition, said she previously had problems submitting information to the state Medicaid agency. She fears new reporting requirements will put her and others at risk of losing coverage, even if they meet the work rule.

She has fibromyalgia, a chronic condition that increases overall sensitivity to pain. She also has food allergies. Medicaid helps pay for medications and doctor visits that keep her healthy and allow her to keep working.

“I work very hard,” Meyer said.

In St. Louis, Jessica Norton, an OB-GYN, treats many Medicaid patients at an Affinia Healthcare clinic. She said they struggle to remain insured even though Missouri extends a full year of Medicaid coverage to eligible women after they give birth. Some of her patients are inexplicably kicked off that coverage by the time of their checkups six weeks after birth. She fears red tape from the new work requirements will make it harder to hang on to insurance, even though pregnant women and new mothers are supposed to be exempt.

Norton criticized lawmakers for the message this policy sends to vulnerable patients. They are saying, “Oh, actually, health care is a privilege, and you have to earn it,” she said.

of adults ages 19 to 64 on Medicaid already work, according to Â鶹ŮÓÅ. The reason many of the remaining adults on Medicaid are not working is that they are retired, serving as a caregiver, or too sick, Â鶹ŮÓÅ has found.

Some states are not only setting the strictest requirements but also blocking out the optional leniency built into the federal rules.

For example, states may adopt additional exemptions from work rules, such as allowing people to claim a “short-term hardship,” designed to provide continued Medicaid coverage to people with medical conditions that prevent them from working.

Missouri lawmakers are seeking a constitutional amendment to bar their state from offering such optional exemptions. But patient advocates warn these limits would harm the state’s vulnerable residents when they need coverage the most, particularly Missouri’s rural cancer patients.

Often, rural Missouri patients must travel to Kansas City or St. Louis for treatment, disrupting their ability to work, Emily Kalmer, a lobbyist for the American Cancer Society’s advocacy arm, testified at the January hearing. Recognizing this, the federal law provides certain exemptions for this kind of scenario.

But this short-term hardship exemption would be off the table in Missouri.

Time is “very important in the life of a cancer patient or a cancer survivor,” Kalmer said.

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“La primera vez, el teléfono suena sin parar. La siguiente, te manda al buzón de voz y se corta la llamada”, dijo la mujer de 48 años, que vive en Delaware. “A veces te contesta alguien que dice que no es la persona indicada. Te transfieren y se corta. A veces contestan y no hay nadie en la línea”.

Pasó meses tratando de averiguar si su cobertura de Medicaid había sido renovada. Hasta finales de marzo, todavía no le había llegado la renovación anual para el programa estatal y federal que ofrece seguro de salud a personas con bajos ingresos y con discapacidades.

Crouch, quien sufrió un aneurisma cerebral debilitante hace una década, también tiene Medicare, que cubre a personas de 65 años o más, o a aquellas con discapacidades. Medicaid pagaba sus deducibles mensuales de Medicare de $200, pero en los últimos tres meses ha tenido que cubrirlos ella misma, lo que ha afectado el ingreso fijo de su familia, contó.

Los problemas de Crouch con el centro de llamadas de Medicaid en Delaware no son un caso aislado. Las agencias estatales de Medicaid pueden tener dificultades para mantener suficiente personal que ayude a las personas a inscribirse en los beneficios y atender llamadas de afiliados con preguntas.

La falta de estos trabajadores puede impedir que las personas usen plenamente sus beneficios, dijeron investigadores de políticas de salud.

Ahora, la ley One Big Beautiful Bill Act de los republicanos aprobada por el Congreso, que el presidente Donald Trump firmó el verano pasado, pronto exigirá más al personal de las agencias estatales en los lugares donde los legisladores ampliaron Medicaid a más adultos con bajos ingresos, que son casi todos los estados y el Distrito de Columbia.

Según la ley, que se espera reduzca el gasto de Medicaid en casi $1.000 millones en los próximos ocho años, estos trabajadores deberán no solo determinar si millones de afiliados cumplen con los nuevos requisitos laborales del programa, sino también verificar con mayor frecuencia que califican: cada seis meses en lugar de una vez al año.

Â鶹ŮÓÅ Health News contactó a agencias que deberán implementar estas reglas de trabajo, y muchas dijeron que necesitarán más personal.

Estas exigencias pondrán más presión sobre una fuerza laboral ya sobrecargada, lo que podría dificultar que afiliados como Crouch reciban servicios básicos de atención al cliente. Y muchos podrían perder acceso a beneficios a los que tienen derecho por ley, según afirmaron defensores del consumidor e investigadores de políticas de salud, algunos con experiencia directa trabajando en agencias estatales.

Los estados ya están “teniendo grandes dificultades”, dijo Jennifer Wagner, directora de elegibilidad e inscripción de Medicaid en el Center on Budget and Policy Priorities y ex subdirectora del Departamento de Servicios Humanos de Illinois. “Habrá desafíos adicionales importantes por culpa de estos cambios”.

Largos tiempos de espera para recibir ayuda

Los republicanos sostienen que los cambios en Medicaid, que entrarán en vigencia el 1 de enero de 2027 en la mayoría de los estados, incentivarán a los afiliados a conseguir empleo. Investigaciones sobre otros programas con requisitos laborales en Medicaid han encontrado poca evidencia de que aumenten el empleo.

La Oficina de Presupuesto del Congreso (CBO, por sus siglas en inglés) provocarán que más personas pierdan la cobertura de salud para 2034: indicó que más de 5 millones de personas podrían verse afectadas.

Muchos estados no tienen suficiente personal para procesar solicitudes o renovaciones de Medicaid con rapidez, dijeron defensores.

Los Centros de Servicios de Medicare y Medicaid (CMS, por siglas en inglés) supervisan si los estados pueden procesar el tipo más común de solicitud de beneficios dentro de un plazo de 45 días.

En diciembre, alrededor del 30% de todas las solicitudes de Medicaid y del Programa de Seguro de Salud Infantil (CHIP, por sus siglas en inglés) en Washington, D.C., y Georgia en procesarse. Más de una cuarta parte tardó ese tiempo en Wyoming. En Maine, una de cada 5 solicitudes no cumplió ese plazo.

Los CMS comenzaron a compartir públicamente datos de los centros de llamadas de Medicaid en 2023, lo que mostró un sistema bajo presión, según investigadores y defensores.

En Hawaii, las personas esperaron más de tres horas al teléfono en diciembre. En Oklahoma, casi una hora, y en Nevada, más de una hora.

En 2023, las agencias estatales de Medicaid comenzaron a verificar que todavía calificaban a los afiliados que habían sido protegidos para que no perdieran su cobertura durante la pandemia de covid. Ese proceso no funcionó bien en muchos estados, y más de .

Investigadores y defensores dicen que implementar las nuevas reglas será un reto mayor. Las reglas laborales requerirán cambios amplios en los sistemas informáticos y capacitación para los trabajadores que verifican la elegibilidad en un plazo ajustado.

“Es un nivel mucho mayor de complejidad administrativa”, señaló Sophia Tripoli, directora de políticas en Families USA, una organización de defensa de salud del consumidor.

Después de meses intentando hablar con alguien, Crouch dijo que finalmente obtuvo respuestas sobre sus beneficios de Medicaid luego de escribir a la oficina de la representante federal Sarah McBride (demócrata de Delaware). La oficina contactó a la agencia estatal de Medicaid, que finalmente la llamó con una actualización, dijo.

Crouch en realidad no calificaba para Medicaid. Dijo que eso nunca había surgido en dos años de interacciones con el estado.

“No tiene ningún sentido que el estado no se haya dado cuenta antes”, dijo.

La agencia de Medicaid de Delaware no respondió a solicitudes de comentarios sobre su caso.

Estados con poco personal para Medicaid

A fines de marzo, algunos estados dijeron a Â鶹ŮÓÅ Health News, que necesitarán más personal para implementar las reglas laborales de manera efectiva.

Idaho informó que tiene 40 vacantes para trabajadores de elegibilidad. Nueva York estimó que necesitará 80 nuevos empleados para manejar el trabajo administrativo adicional, con un costo de $6,2 millones. Pennsylvania tiene casi 400 puestos vacantes en oficinas de servicios humanos de los condados. La agencia de Medicaid de Indiana tiene 94 vacantes. Maine quiere contratar 90 trabajadores adicionales, y Massachusetts busca sumar 70 más. Montana llenó 39 de los 59 puestos que dice que necesitará.

La agencia de servicios sociales de Missouri ha reducido personal y tiene 1.000 trabajadores de primera línea menos que hace aproximadamente una década, esto con más del doble de afiliados en Medicaid y en el Programa de Asistencia Nutricional Suplementaria (SNAP, por sus siglas en inglés), según comentarios de su directora, Jessica Bax,

“El departamento pensó que habría una mejora en la eficiencia gracias a las actualizaciones del sistema de elegibilidad”, dijo Bax. “Muchas de esas mejoras no se concretaron”.

Los estados podrían tener dificultades para encontrar personas interesadas en estos trabajos, que requieren meses de capacitación, pueden ser emocionalmente exigentes y generalmente ofrecen salarios bajos, afirmó Tricia Brooks, investigadora del Centro para Niños y Familias de la Universidad de Georgetown.

“Reciben muchos reclamos y gritos”, dijo Brooks, quien antes dirigió el programa de atención al cliente de Medicaid y CHIP en New Hampshire. “Las personas están frustradas. Lloran. Están preocupadas. Están perdiendo acceso a la atención médica, y no es un trabajo fácil cuando es difícil ayudar”.

Los estados están pagando millones de dólares a contratistas del gobierno para ayudar a cumplir con la nueva ley federal.

Maximus, un contratista de servicios gubernamentales, brinda apoyo en elegibilidad, como la gestión de centros de llamadas, en 17 estados que ampliaron Medicaid y atiende a casi 3 de cada 5 personas inscritas en el programa a nivel nacional, según la empresa.

Durante una llamada de resultados en febrero, la empresa dijo que puede cobrar según el número de gestiones que realiza para los afiliados, independientemente de cuántas personas estén inscritas en el programa en un estado.

Maximus no tiene “un enfoque único” para los servicios que ofrece ni para cómo cobra por ellos, dijo su vocera Marci Goldstein a Â鶹ŮÓÅ Health News.

La empresa, que reportó ingresos de $1.760 millones en 2025 en el área que incluye trabajo relacionado con Medicaid, espera que esos ingresos sigan creciendo, incluso si menos personas permanecen en el programa, “debido a las gestiones adicionales que serán necesarias”, señaló David Mutryn, director financiero y tesorero de Maximus.

Perder la cobertura de Medicaid no es solo una molestia, ya que muchas personas inscritas probablemente no ganan lo suficiente para pagar atención médica por su cuenta y pueden no calificar para ayuda financiera bajo la Ley de Cuidado de Salud a Bajo Precio (ACA), dijo Elizabeth Edwards, abogada del National Health Law Program.

Las personas podrían no poder pagar medicamentos o recibir atención esencial, lo que podría tener impactos “devastadores” en la salud, dijo.

“Lo que está en juego son las vidas de las personas”, concluyó.

Los corresponsales de Â鶹ŮÓÅ Health News Katheryn Houghton y Samantha Liss contribuyeron con este artículo.

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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That monthly total is $200 higher than what he paid last year, due in part to the expiration in December of covid pandemic-era premium tax credits. But the self-employed St. Louis property manager isn’t in any hurry to investigate a new type of coverage that might be cheaper than his marketplace plan: farm bureau health plans.

“Although I’m not a fan of rising costs, I’m not going to sacrifice coverage for my kids to save a buck,” Carlton said.

Carlton finds himself among a growing number of Americans who have confronted difficult choices because of rising Affordable Care Act premiums and other affordability issues. For instance, a found that many returning marketplace enrollees reported higher costs this year.

In addition, most expressed worry about affording routine and unexpected medical care, as well as the cost of prescription drugs. Worries were greater among those with lower incomes and chronic health conditions. And about 5% of respondents said they had switched to some type of non-ACA coverage.

Health policy experts say such concerns are giving new legs to alternative forms of coverage — for instance, farm bureau plans.

As of this year, that allow health coverage through state farm bureaus, grassroots membership organizations that advocate for the agricultural industry and rural interests. An annual membership in the bureau typically costs $30 to $50, and in many of the states anyone can join. With membership comes the option of buying into the health plan.

Plan details vary by state, but they typically share many features of marketplace plans, including coverage of a wide range of services, a broad practitioner network, and a way to file complaints.

But because states have passed laws exempting from health insurance requirements, they don’t offer many of the coverage protections provided by insurance. That means their benefits and coverage rules may be less generous or predictable than Obamacare plans.

Crucially, farm bureau plans don’t have to accept everyone who applies for coverage. People must pass underwriting first, a process in which plans evaluate applicants’ medical history and health conditions and decide whether to offer them coverage. This practice was routine before the ACA passed, and people were often rejected due to preexisting medical conditions.

Because farm bureau plans can turn down people with expensive chronic conditions or a history of cancer or other medical issues, farm bureau plans may be than unsubsidized marketplace plans, plan managers say.

As people struggle to keep family farms afloat, they may face Obamacare premiums totaling thousands of dollars a month, leading some to forgo coverage, said Missouri Farm Bureau president Garrett Hawkins.

“We’re trying to present another option,” he said.

Sowing Choices

In 2026, with the expiration of enhanced premium tax credits, average ACA premium payments were estimated to for subsidized enrollees who retained their marketplace plan, according to Â鶹ŮÓÅ.

Last year, was one of four states that passed laws permitting farm bureau health plans. The others were , , and .

Although the number of states offering them has ticked up in recent years, farm bureau health plans aren’t new. Tennessee has been offering the coverage . Tennessee’s Farm Bureau Health Plans administers the plans in 10 of the 14 states that permit them.

In Missouri, the farm bureau offers with varying deductibles, copayments, and annual limits on out-of-pocket spending. Many of the benefits and cost-sharing amounts look like the coverage someone might get on the state health insurance exchanges or through an employer. They include emergency care and hospitalization, physician office visits, prescription drugs, free preventive care, and dental and vision services. Members have access to providers through the UnitedHealthcare Choice Plus national network.

Hawkins said he’s pleased with the interest the plans are generating. People could apply for coverage through the website starting Jan. 1, and by mid-March, 520 people had submitted applications, he said.

It’s uncertain how many of those people will clear the underwriting hurdle and buy a farm bureau plan, however. Farm bureau health plans can deny coverage for any reason. Even if coverage is offered, plans in Missouri don’t cover any for at least six or 12 months. In addition, plans may exclude coverage of any benefits related to a “known risk” for two to seven years, depending on the issue. So people with a range of conditions, such as diabetes, high cholesterol, heart problems, or successfully treated cancer, may be turned down or have to pay out-of-pocket for any related care for at least a year and possibly as long as seven years.

“People don’t like that we underwrite, but if we did everything like the ACA, we’d be just like an ACA plan,” said , general counsel and chief compliance and privacy officer at Tennessee’s Farm Bureau Health Plans. “We’re trying to be an option for folks that would otherwise not have coverage.”

Staying Rooted in Coverage

Under the Missouri law, once someone is covered by a farm bureau plan, they can’t be kicked off or charged a higher rate if they get sick. That’s also true for the nine other states where Tennessee administers the plans, Beard said.

“We do not contractually have the right to raise premiums or cancel plans based on [an individual’s] health experience,” he said.

And yet, “it can be really confusing to people” because the plans look like insurance products, but they don’t have the same protections, said , principal for policy development, access to, and quality of care at the American Cancer Society Cancer Action Network.

Someone with a history of cancer would be unlikely to get approved for a farm bureau plan in the first place, Howard said. If they were accepted, the services they might need would likely be excluded from coverage, she said.

“We’re just concerned that there’s going to be more people enrolled in these plans now because there’s so many more states that are allowing them,” Howard said.

Carlton, the self-employed property manager, knows firsthand how underwriting can limit coverage options. Before the Affordable Care Act required that anyone be accepted regardless of health status, Carlton, who has diabetes, had to buy coverage through his state’s high-risk pool, which was often the only option for people with preexisting conditions.

Meanwhile, policy experts share Howard’s concerns.

Insurance companies in the ACA marketplaces “have to offer maternity coverage, and they have to give you benefits on day one for a preexisting condition, and they can’t charge you more because you have that condition,” said , vice president for health policy at the Center on Budget and Policy Priorities. This creates an uneven playing field for insurers and drives up premiums for the people who can’t get into farm bureau plans.

Farm bureau plans “get to use, you know, the standard market as a high-risk pool, essentially, if they want to,” Lueck said.

Still, with the huge jump in premiums that many people are facing for ACA coverage, it’s easy to understand the appeal of farm bureau plans.

“I’m not saying it’s a good thing that states have abdicated their regulatory responsibility here,” said , co-director of the Center on Health Insurance Reforms at Georgetown University. “I’m just saying that there are a lot of people out there who are struggling, who need health care, and simply can’t afford the premiums in these ACA marketplaces anymore.”

Are you struggling to afford your health insurance? Have you decided to forgo coverage? Click here to contact Â鶹ŮÓÅ Health News and share your story.

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“The first time, it’ll ring interminably. Next time, it’ll go to a voicemail that just hangs up on you,” said the 48-year-old, who lives in Delaware. “Sometimes you’ll get a person who says they’re not the right one. They transfer you, and it hangs up. Sometimes, it picks up and there’s just nobody on the line.”

She spent months trying to figure out whether her Medicaid coverage had been renewed. As of late March, she hadn’t been reapproved for the year for the state-federal program, which provides health insurance for people with low incomes and disabilities.

Crouch, who suffered a debilitating brain aneurysm a decade ago, also has Medicare, which covers people who are 65 or older or have disabilities. Medicaid had been paying her monthly Medicare deductibles of $200, but she’d been on the hook for them for the past three months, straining her family’s fixed income, she said.

Crouch’s challenges with Delaware’s Medicaid call center aren’t unique. State Medicaid agencies can struggle to keep enough staff to help people sign up for benefits and field calls from enrollees with questions. A shortage of such workers can keep people from fully using their benefits, health policy researchers said.

Now, congressional Republicans’ One Big Beautiful Bill Act, which President Donald Trump signed into law last summer, will soon demand more from staff at state agencies in places where lawmakers expanded Medicaid to more low-income adults — nearly all states and the District of Columbia.

Under the law, which is expected to reduce Medicaid spending by almost $1 trillion over the next eight years, these staffers will have to not only determine whether millions of enrollees meet the program’s new work requirements but also verify more frequently that they qualify for the program — every six months instead of yearly.

Â鶹ŮÓÅ Health News reached out to agencies that will need to stand up the work rules, and many said they’ll need additional staff.

The mandates will put extra strain on an already-stressed workforce, potentially making it harder for enrollees like Crouch to get basic customer service. And many could lose access to benefits they’re legally entitled to, said consumer advocates and health policy researchers, some of them with direct experience working at state agencies.

States are already “struggling significantly,” said Jennifer Wagner, the director of Medicaid eligibility and enrollment at the Center on Budget and Policy Priorities and a former associate director of the Illinois Department of Human Services. “There will be significant additional challenges caused by these changes.”

Long Wait Times for Help

Republicans argue the Medicaid changes, which will take effect Jan. 1, 2027, in most states, will encourage enrollees to find jobs. Research on other Medicaid work requirement programs has found little evidence they increase employment.

The Congressional Budget Office would cause more people to lose health coverage by 2034 than any other part of the GOP budget law. It said last year more than 5 million people could be affected.

Many states don’t have the staff to process Medicaid applications or renewals quickly, said consumer advocates and researchers.

The Centers for Medicare & Medicaid Services tracks whether states can handle the most common type of benefit application within a 45-day window.

In December, about 30% of all Medicaid and Children’s Health Insurance Program, or CHIP, applications in Washington, D.C., and Georgia to process. More than a quarter took that long in Wyoming. In Maine, 1 in 5 applications missed that deadline.

CMS began publicly sharing state Medicaid call center data in 2023, revealing a taxed system, researchers and consumer advocates said.

In Hawaii, people waited on the phone for more than three hours in December. They waited for nearly an hour in Oklahoma, and more than an hour in Nevada.

In 2023, state Medicaid agencies began making sure enrollees who were protected from being dropped from the program during the covid pandemic still qualified for coverage. That Medicaid unwinding process didn’t go well in many states, and lost their benefits.

Health policy researchers and consumer advocates say rolling out the new Medicaid rules will be a bigger challenge. The Medicaid work rules will require extensive IT system changes and training for workers verifying eligibility on a tight timeline.

“It is a much larger scale of administrative complexity,” said Sophia Tripoli, senior director of policy at Families USA, a health care consumer advocacy organization.

After months of trying to get someone on the phone, Crouch said, she finally got answers to questions about her Medicaid benefits after writing to the office of U.S. Rep. Sarah McBride (D-Del.). McBride’s office contacted the state’s Medicaid agency, which eventually called with an update, Crouch said.

Crouch didn’t qualify for Medicaid after all. She said that had never come up in two years of interactions with the state.

“It makes absolutely no sense” that the state never realized she shouldn’t have been on the program, Crouch said.

Delaware’s Medicaid agency didn’t respond to requests for comment on Crouch’s situation.

States Short-Staffed for Medicaid

Some states told Â鶹ŮÓÅ Health News in late March that they’ll need more staff to roll out the work rules effectively.

Idaho said it has 40 eligibility worker vacancies. New York estimated it will need 80 new employees to handle the additional administrative work, at a cost of $6.2 million. Pennsylvania said it has nearly 400 open positions in county human services offices in the state. Indiana’s Medicaid agency has 94 open positions. Maine wants to hire 90 additional staffers, and Massachusetts wants to hire 70 more.

As of early March, Montana had filled 39 of 59 positions state officials projected it would need. The state still plans to roll out the rules early, starting July 1, despite its long struggle with system backlogs that applicants said have delayed benefits.

Missouri’s social services agency has been cutting staff and has 1,000 fewer front-line workers than it did roughly a decade ago — with more than double the number of enrollees in Medicaid and the Supplemental Nutrition Assistance Program, or SNAP, according to comments Jessica Bax, the agency director, made in November.

“The department thought that there would be a gain in efficiency due to eligibility system upgrades,” Bax said. “Many of those did not come to fruition.”

States could have a hard time finding people interested in taking those jobs, which require months-long training, can be emotionally challenging, and generally offer low pay, said Tricia Brooks, a researcher at the Georgetown University Center for Children and Families.

“They get yelled at a lot,” said Brooks, who formerly ran New Hampshire’s Medicaid and CHIP customer service program. “People are frustrated. They’re crying. They’re concerned. They’re losing access to health care, and so sometimes it’s not an easy job to take if it’s hard to help someone.”

States are paying government contractors millions of dollars to help them comply with the new federal law.

Maximus, a government services contractor, provides eligibility support, such as running call centers, in 17 states that expanded Medicaid and interacts with nearly 3 in 5 people enrolled in the program nationally, according to the company.

During a February earnings call, company leadership said Maximus can charge based on the number of transactions it completes for enrollees, independent of how many people are enrolled in a state’s Medicaid program.

Maximus has “no one-size-fits-all approach” to the services it offers or the way it charges for those services, spokesperson Marci Goldstein told Â鶹ŮÓÅ Health News.

The company, which reported bringing in $1.76 billion in 2025 from the part of its business that includes Medicaid work, expects that revenue to continue to grow, even as people fall off the Medicaid rolls, “because of the additional transactions that will need to take place,” David Mutryn, Maximus’ chief financial officer and treasurer, said during the earnings call.

Losing Medicaid health coverage isn’t just an inconvenience, since many people enrolled in the program probably don’t make enough money to pay for health care on their own and may not qualify for financial help for Affordable Care Act coverage, said Elizabeth Edwards, a senior attorney with the National Health Law Program.

People could be unable to afford medications or get essential care, which could lead to “devastating” health impacts, she said.

“The human stakes of this are people’s lives,” she said.

Â鶹ŮÓÅ Health News correspondents Katheryn Houghton and Samantha Liss contributed to this report.

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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A mom of seven, Pipe is a doula on the reservation who supports new and expectant parents. She does that work free, around her day job. That’s because in this town of about 2,000 people, the closest hospital that delivers babies is 100 miles away.

“Women need this help,” Pipe said.

Doulas ready parents for childbirth, support their deliveries, and can be a steady presence in a baby’s first months. their work with lower rates of costly birth and postpartum complications — especially in hard-to-reach places like Lame Deer.

But that help can be scarce. As Pipe put it: “Doula doesn’t pay the bills around here.”

Things were supposed to change this year. Montana was set to join that reimburse doulas through their Medicaid programs to ease gaps in care. Montana lawmakers approved the payments last year, authorizing up to $1,600 per pregnancy. Pipe hoped that money would give her the chance to leave her post office job one day to help more parents.

But the state Department of Public Health and Human Services postponed adding doula services to its Medicaid program in late March, citing a budget shortfall driven in part by higher-than-expected Medicaid costs.

“DPHHS will not be moving forward with the implementation of doula services in the Montana Medicaid benefit package at this time,” department spokesperson Holly Matkin told Â鶹ŮÓÅ Health News.

The news caught Pipe by surprise — she hadn’t heard any updates in a while, but the state had finalized its licensing rules for doulas in January. Last year, she supported three people through their deliveries. She doesn’t have time for much more. That weighs on her. the people on the Northern Cheyenne Indian Reservation , and the people she helps usually can’t afford to pay a doula.

“I was looking forward to serving more people,” Pipe said. “Now that’s not going to happen anytime soon.”

Charlie Brereton, who heads the health department, told state lawmakers in March that the agency projected a $146.3 million shortfall in federal Medicaid funds for this year. Health officials predict another deficit next year as states feel the effects of Republicans’ massive tax-and-spending law, the One Big Beautiful Bill Act. Signed last year, that law is projected to reduce federal Medicaid spending by nearly $1 trillion over 10 years.

Matkin said it’s “unclear” whether the agency can authorize doula coverage this year. The deficit will lead the department to seek supplemental funding from state lawmakers. When an agency makes that kind of request for the first year of the state’s two-year budget cycle, requires it to create a plan to reduce its spending.

Around the country, optional Medicaid services — such as doula support, home health care, and dental work — are at risk of losing funding as states brace for federal Medicaid cuts to hit their bottom lines. Already, lawmakers in Idaho are considering their own reductions to Medicaid to balance the state’s budget. cutting tens of millions of dollars in services for people with disabilities.

In Montana, doula services are unlikely to be the only Medicaid cutbacks announced. “All options are on the table,” Brereton told lawmakers in March.

Stephanie Morton, executive director of Healthy Mothers, Healthy Babies-The Montana Coalition, said more than half of Montana’s counties are designated as maternity care deserts.

“Budget cuts will continue to diminish the limited services families rely upon in these counties,” said Morton, whose nonprofit had advocated for doula Medicaid reimbursement. “This decision feels like the first of many rollbacks and cuts Montanans will face.”

Laboring Alone

At the check-in just outside town, Pipe handed a waking newborn to his mother and unwrapped a new swaddle for the child. This would have to be a quick visit — she was already late for work.

The mother, Britney WolfVoice, held her newborn son as her three young daughters stood close by. Pipe has been with WolfVoice and her husband for the birth of their newborn son and youngest daughter.

She helped them create delivery plans. For the birth of WolfVoice’s youngest daughter a few years ago, Pipe brought cedar oil, a sacred plant used for prayer, and calmed WolfVoice through her contractions. For the recent birth of her son, when hospital backlogs delayed WolfVoice’s induction, Pipe encouraged her to advocate for an earlier appointment by routinely calling the hospital. Doctors had recommended the procedure to avoid complications.

“Misty is one person who I can count on to be my voice,” WolfVoice said.

If someone needs a ride to a doctor’s appointment, Pipe takes time off work to drive them. If a client goes into labor when Pipe’s at the post office, she texts two other free doulas she knows of on the reservation to see if they have time to help until her shift ends. But they also have day jobs.

Pipe herself has ridden that 100-mile stretch between home and the hospital in labor and in the back of an ambulance. Twice, she gave birth in emergency rooms along the way. In one of her pregnancies, she miscarried at home and couldn’t get a doctor appointment for days.

The long distance to receive care often meant her husband had to stay behind to tend to their other children at home.

“I labored alone so many times,” Pipe said. “I just want to make sure no one’s alone.”

Rural maternity care deserts are a , especially as labor and delivery units continue to shutter. In many tribal communities, a lack of care coincides with long-standing inequities caused by centuries of .

Predominantly Indigenous communities face the longest distances to obstetric facilities compared with all other racial and ethnic groups, according to a 2024 report from the March of Dimes. That’s part of the reason Indigenous women are far more likely to get sick from pregnancy and as white women.

Indigenous patients are supposed to be guaranteed access to health care through the federal Indian Health Service. But the chronically underfunded agency has severe gaps. A small fraction of its hospitals and clinics offer labor and delivery. As of 2024, only seven states had either an IHS or tribal birth facility, . To help fill in those shortfalls, Medicaid is the for many Native Americans, according to Â鶹ŮÓÅ.

Even where care exists, Native women can experience a distrust of health systems, according to Pipe and other health workers. The U.S. government has a long history of removing children from tribal homes and forcing Native American women to undergo sterilization.

of the Pacific Institute for Research and Evaluation’s Southwest center has studied premature deaths among Native Americans. A member of the Fort Sill-Chiricahua-Warm Springs-Apache Tribe, Haozous said data on maternal health disparities in pregnancy and postpartum often misses a key point.

“It’s not that women are just not taking care of themselves,” Haozous said. “The system is set up for them to not have access to care.”

On top of funding cuts, the One Big Beautiful Bill Act will add more frequent eligibility checks and work requirements to access Medicaid. Those changes, when they take effect later this year and next, will lead an estimated 5.3 million people to lose their coverage by 2034.

Native Americans are exempt from some of the law’s new rules, such as the work requirements. Even so, tribal patients can get tangled in administrative hurdles. That includes struggling to enroll in the first place or to prove their tribal status. A full-time college student, WolfVoice said that when she got pregnant, it took about six months to enroll in the state’s Medicaid program.

Despite Montana’s long struggle with a backlogged Medicaid system, state officials aim to implement work requirements this summer, well before the federal deadline.

‘Moccasins on the Ground’

As Pipe pulled into her driveway one day after a full shift at the post office, her kids ran to her. She was also greeted by Felicia Blindman, a 63-year-old public health nurse who used to work for the tribe. The two sat in lawn chairs into the night and brainstormed ways to connect more women to services — such as free prenatal classes.

Pipe’s four youngest children played around them. Her 14-year-old daughter is already certified as an Indigenous doula. Her 8-year-old daughter has begun helping Pipe pick up prescriptions for moms without a car who live out of town. Pipe hopes one day they could do that work full-time, if they want to.

Because of the lost Medicaid payment, Pipe said, she will continue to balance her job with her birth work, even if it means persuading more people to become doulas, such as family and respected community members, to cover more ground.

“It’s not going to stop me from training more birth workers, more young people, more aunties,” Pipe said. “For now, I guess it’s more about grassroots, moccasins on the ground, helping each other.”

She said that means telling pregnant people who walk into the post office she’s there to help if they need support. At least, as long as she’s not at her day job.

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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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 Â鶹ŮÓÅ 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 Â鶹ŮÓÅ 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 Â鶹ŮÓÅ, a health information nonprofit that includes Â鶹ŮÓÅ 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.

Do you have an experience with prior authorization you’d like to share? to tell Â鶹ŮÓÅ Health News your story.

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The upshot, : Babies fed rival Mead Johnson Nutrition’s acidified liquid human milk fortifier — a nutritional supplement used in neonatal intensive care units — developed certain complications at higher rates than those given an Abbott fortifier, a researcher at the University of Nebraska had found.

At least one of those complications .

The Abbott scientist, Bridget Barrett-Reis, described the results in the email to colleagues, using two exclamation points. Then she proposed that Abbott test the Mead Johnson fortifier, acidified for sterilization, against another Abbott product.

The clinical trial among preterm infants that Abbott subsequently sponsored, , is a case study of corporate warfare in the high-stakes business of infant nutrition, wherein preemies have been coveted like commodities; their anxious, vulnerable parents have been — whether they know it or not — targets of calculated commercial pursuit; and scientific research has been used as a marketing tool.

In hospitals around the country, dozens of babies born an average of 11 weeks early were fed Mead Johnson’s fortifier. Dozens of others were fed an Abbott fortifier that wasn’t acidified.

The clinical trial became a boon for Abbott, which to wrest market share from Mead Johnson. But for some of the babies enrolled, it didn’t turn out so well, a Â鶹ŮÓÅ Health News investigation found.

Far more infants given Mead Johnson’s product developed a buildup of acid in the blood called metabolic acidosis than those fed Abbott’s product — 19 versus four, according to results published in the journal .

Two outside doctors monitoring infants in the study became so alarmed that they refused to enroll any more babies, according to an April 2016 email one of them sent to Abbott.

In a related email to Abbott, neonatologist Robert White of Memorial Hospital in South Bend, Indiana, and Pediatrix Medical Group — an investigator in the study — .

“We had another SAE” — serious adverse event — “today in which a child developed profound metabolic acidosis while on the study fortifier,” White wrote. The severity was “unlike what we would see in most children with these issues.”

A manager at Abbott replied that the company was “taking your concerns very seriously.”

The study continued for almost a year.

At least some of the consent forms used to inform parents about risks did not mention metabolic acidosis or the often-fatal necrotizing enterocolitis, another condition identified in the 2013 email that led to the study.

In a November response to questions for this article, Abbott spokesperson Scott Stoffel said the clinical trial “was safe and ethical” and that the fortifiers it compared were “on the market and widely used.”

The study was “led by 20 non-Abbott investigators,” Stoffel said.

According to a federal website, chaired the study.

Stoffel added that the study was approved “by 14 independent safety review boards at hospitals” and “published in a leading peer-reviewed scientific journal.”

“It is reckless and not credible to suggest that these doctors and institutions conducted and then published the results of an unsafe or unethical study,” Stoffel said.

A spokesperson for Mead Johnson, Jennifer O’Neill, did not comment on Abbott’s clinical trial but said in a November statement to Â鶹ŮÓÅ Health News that existing studies “cannot responsibly support” any connection between the acidified fortifier and conditions such as necrotizing enterocolitis or metabolic acidosis.

Mead Johnson executive Cindy Hasseberg argued in a deposition that Abbott waged a “smear campaign” against the acidified fortifier that was “very hard to come back from.”

In 2024, Mead Johnson discontinued the product.

Winning the ‘Hospital War’

Behind their warm-and-fuzzy marketing, industry giants Abbott, maker of Similac products, and Mead Johnson, maker of the Enfamil line, have turned neonatal intensive care units into arenas of brutal competition.

This article quotes from and is based largely on records from three lawsuits against formula manufacturers that went to trial in 2024 and are now on appeal. The cases are , , and The records include emails, internal presentations, and other company documents used as exhibits in litigation, as well as court transcripts and witness testimony from depositions.

The records provide an inside view of the business of infant formula and fortifier, a nutritional supplement added to a mother’s milk. For example, a Mead Johnson slide deck for a 2020 national sales meeting — later used in the Whitfield trial — outlined a plan for “Branding NICU Babies.”

Urging employees to win more sales from neonatal intensive care units, the document said: “’”

In internal documents and other material from litigation reviewed by Â鶹ŮÓÅ Health News, formula makers described hospitals as gateways to the much larger retail market because parents are likely to stick with the brand their babies started on. Products used in the NICU help win hospital contracts, and hospital contracts help establish brand loyalty, according to court records.

Manufacturers vie for contracts that can be “exclusive” or nearly so, according to records from the litigation, including company documents and testimony by people who have worked in management for the companies.

An undated Abbott presentation used in the Gill case, apparently referring to inroads with hospitals in its rivalry with Mead Johnson, boasted of “MJ Strongholds Broken!”

It saluted two employees who “Own 27K Babies Exclusively,” and said another “Stole 600 formula feeders from MJ.”

Still others were praised for “Playing in Mom’s mailbox” or “kicking … and ‘taking names.’”

In July 2024, Abbott CEO Robert Ford said in a conference call for investors that formula and fortifier for preterm infants generated total annual revenue of about $9 million — a small portion of Abbott’s total sales of $42 billion in 2024 and its $2.2 billion of sales in the United States from pediatric nutritional products.

Industry documents cited in litigation provide a different perspective.

“‘,” stated an Abbott training presentation from about a decade ago used in the Gill and Whitfield trials.

That described a baby’s first formula feeding in the hospital, the document said. Over 74% of the time, an infant fed formula in the hospital stays on that brand at home, the document said.

Abbott’s goal was that the first-bottle-fed strategy , the document showed. A staff training slide displayed during the Whitfield trial showed how that momentum could pay off in bonuses for Abbott sales representatives, leading to a “Happy Rep.”

Mead Johnson has espoused a similar strategy.

The company rolled out a with cash rewards for flipping hospitals from Abbott, according to a 2019 document marked for internal use by Mead Johnson and its parent company, England-based Reckitt Benckiser Group, and admitted into evidence in the Watson case.

“ is critical to contract gains and acquisition,” stated a company plan for 2022 that was cited in the Whitfield case.

One Abbott document shown in the Whitfield trial said more than half of first feedings happen at night, adding, “.”

A “Mead Johnson University” training document described a scenario in which a sales rep overhears patient information in a NICU and encouraged the rep to promote the company’s products. The document, titled “,” was admitted as evidence in the Watson case.

“[Y]ou are walking back into your most important NICU,” it said. “You overhear the HCP’s” — health care providers, apparently — “stating all of the notes,” it said. “There may be some information that may help you to position your products as a resource for this patient and to handle any objections that the HCP may present you with.”

To win parents’ business, companies have supplied formula to hospitals free or at a loss, court records show. That has resulted in such curiosities as a Mead Johnson “purchasing agreement” cited in the Watson case, listing the price for product after product as “no charge.”

In a 2017 strategy document prepared for Mead Johnson, a consulting firm laid out a plan “to win hospital war.”

Why focus on hospitals? “,” it explained.

The document was displayed in the Whitfield case.

In the market for preterm nutrition, Abbott and Mead Johnson compete with each other, not against the use of human milk, the companies told Â鶹ŮÓÅ Health News.

“Thus, references in documents about wanting to ‘win’ or ‘own’ the NICU refer to out-performing Mead Johnson by offering the highest-quality products,” Abbott’s Stoffel said in February.

Asked specific questions about business strategies and internal documents, Mead Johnson’s O’Neill said the company was “concerned that you are presenting a misleading and incomplete picture.”

Mead Johnson’s products “are safe, effective, and recommended by neonatologists when clinically appropriate,” O’Neill added.

On the Defensive

In courthouses around the country, Abbott and Mead Johnson are on the defensive — and have been for years.

In hundreds of lawsuits, parents of sickened or deceased preterm infants have alleged that formula designed for preemies has caused necrotizing enterocolitis, or NEC, a devastating condition in which immature intestinal tissue can become infected and die, spreading infection through the body.

Lawsuits also accuse the manufacturers of failing to warn parents of the risk.

One of the cases on which this article is based, , resulted in a against Mead Johnson. , Gill v. Abbott Laboratories, et al., resulted in a against Abbott. , Whitfield v. St. Louis Children’s Hospital, et al., resulted in a , but the judge found errors and misconduct on the part of defense counsel, faulted his own performance, and .

The cases have involved children like Robynn Davis, who was born at 26 weeks, lost 75% to 80% of her intestine to NEC, suffered brain damage — and, at almost 3 years old, couldn’t walk, couldn’t really talk, and was eating through a tube, as Jacob Plattenberger, an attorney representing her, in 2024.

An attorney for Abbott, James Hurst, that Robynn suffered a catastrophic brain injury at birth, 10 days before she received any Abbott formula, and that her NEC resulted not from formula but from many health problems.

In at least three cases, a federal judge has in favor of Abbott — ruling for the company before the lawsuits even reached trial.

The formula makers have repeatedly denied fault.

Addressing stock analysts in 2024, as “without merit or scientific support” the theory that preterm infant formula or milk fortifier caused NEC.

In a issued in 2024, the FDA, the Centers for Disease Control and Prevention, and the National Institutes of Health said there was “no conclusive evidence that preterm infant formula causes NEC.”

Mead Johnson’s O’Neill said the scientific consensus is that there is no established causal link between the use of specialized preterm hospital nutrition products and NEC.

Neonatologists use the products routinely, O’Neill said.

O’Neill cited a statement by the saying the causes of NEC “are multifaceted and not completely understood.”

In a legal brief filed with an Illinois appeals court in the Watson case, the company said “the NEC-related risks” of a formula for preterm infants “are the subject of medical debate,” adding that trial evidence “demonstrated, at a minimum, uncertainty as to the magnitude of the risk, as well as the causal role of various feeding options in the development of NEC.”

Manufacturers say formula is needed when mother’s milk or human donor milk isn’t an option. Fortifier, a product tailored to preemies, is meant to augment mother’s milk when babies are born prematurely and a mother’s milk alone doesn’t deliver enough nutrition. The Mead Johnson fortifier used in the head-to-head clinical trial sponsored by Abbott was acidified to prevent bacterial contamination.

In March 2025, Health and Human Services Secretary Robert F. Kennedy Jr. announced that his department, which encompasses the FDA, was undertaking a review of infant formula, dubbed “Operation Stork Speed.” It includes and increasing testing for heavy metals and other contaminants, HHS said.

However, is limited. The agency doesn’t approve the products or their labeling. Whether to report adverse events — illnesses or deaths potentially related to the products — to the FDA is largely at manufacturers’ discretion.

The business of infant formula further spotlights a central contradiction in the Trump administration’s health policies. When it comes to food and medical products, the administration has criticized industry-funded research as unworthy of trust. Yet under Kennedy, it has disrupted, defunded, or sought to cut government-funded research, which could leave industry-funded research with a larger and more influential role.

It “is entirely appropriate for the Department to scrutinize research design, conflicts of interest, and funding sources, particularly when research is used to inform public policy,” HHS spokesperson Andrew Nixon said.

‘At the Table’

Company emails cited in litigation shed light on the industry’s approach to research.

In a 2015 email, when Mead Johnson was considering supplying some of its formula to a researcher for a study, a company neonatologist expressed concern that the results could be spun to make the preemie product look unsafe.

“However, we are more likely to have control over final language if we provide the small support and are ‘at the table’ with him,” Mead Johnson’s Timothy Cooper added in the email, which was cited in the Watson trial.

In 2017, Abbott with researchers at Johns Hopkins University about a study on how the composition of infant formula might affect NEC in mice. The email thread became an exhibit in the Whitfield case.

Abbott was both funding and collaborating on the work, shows.

Forwarding a draft of the resulting paper to Abbott, David Hackam, chief of pediatric surgery at the Johns Hopkins University School of Medicine, said in one of the emails, “We hope you like it.” He also requested help from Abbott in filling in information.

“The manuscript looks great!” Abbott’s Tapas Das , after a back-and-forth.

But Abbott had some changes, the email thread shows.

“We (VM & DT) made some edits in the text especially to soften a bit with the statement ‘infant formula seems responsible for developing NEC,’” Das wrote.

“Instead, we thought if we could state as ‘infant formula is linked to severity of NEC’. So we made changes throughout the text emphasizing on severity of NEC by infant formula rather than development of NEC by infant formula,” Das wrote.

Das wrote that “other factors are involved for NEC development as described in the text.”

Hackam did not respond to questions Â鶹ŮÓÅ Health News sent by email.

Efforts to reach Das and Cooper — including by phoning numbers and sending letters to addresses that appeared to be associated with them — were unsuccessful.

When Mead Johnson provided support to scientific researchers, the company would want to make sure they reported the results “in an honest way,” Cooper said in a deposition played in the Watson trial.

The Abbott co-authors “proposed routine edits to the article for scientific accuracy and for the consideration of the other authors, some of the most well-respected NEC researchers in the world,” Abbott’s Stoffel said.

“Abbott regularly collaborates with and publishes studies with leading NEC scientists for the benefit of both premature infants and the entire scientific community,” Stoffel said.

“The research studies Mead Johnson supports are conducted independently and appropriately, with full transparency,” said O’Neill, the Mead Johnson spokesperson.

‘In the Wrong Direction’

Transparency can be subjective.

More than a decade ago, Mead Johnson sponsored a clinical trial testing what was then a new acidified liquid fortifier against a powdered fortifier already on the market.

In the study, which enrolled 150 babies, 5% of infants fed the acidified liquid developed NEC compared with 1% of infants fed the powder, according to deposition testimony and a record of the clinical trial used in the Watson case.

That information was not included in a 2012 that reported the study results.

The article, in the journal Pediatrics, whose authors included two Mead Johnson employees, concluded it was safe to use the new liquid fortifier instead of the powdered one. The article also said that, comparing babies fed the liquid with those fed the powder, the study observed no difference in the incidence of NEC.

The unpublished finding of 5% to 1% represented so few babies that it was not statistically significant.

Nonetheless, retired neonatologist Victor Herson, who ran a NICU in Connecticut and has studied fortifiers, said in an interview he would have wanted to see those numbers.

“The trend was in the wrong direction,” Herson said, “and would have, I think, alerted the typical neonatologist that, well, maybe not to rush in and adopt” the new fortifier.

It’s common for study publications to include tables showing complications even if they aren’t statistically significant so that readers can draw their own conclusions, Herson said.

Neonatologist Fernando Moya, a co-author of the Pediatrics article, had a different perspective.

“You may not be very familiar with medical literature but when there are no ‘statistically significant’ differences, we do not comment on whether something was increased or decreased,” Moya said by email. He referred questions to Mead Johnson.

Mead Johnson’s O’Neill gave several reasons why “the data you cite was not included in the publication.” She said the study was designed to examine infant nutrition and growth, NEC was a “secondary outcome,” the NEC numbers weren’t statistically significant, and the size of the study, “while appropriate, was not powered to draw any conclusions with respect to any potential differences in NEC.”

In a deposition used in the Watson trial, Carol Lynn Berseth — a co-author of the paper and Mead Johnson’s director of medical affairs for North America when the study was completed — testified that the article was peer-reviewed and that no reviewer asked for additional data.

“Had they asked for it, we would have shown it,” Berseth testified.

Berseth did not respond to a phone message or to an email or letter sent to addresses apparently associated with her.

‘It Should Not Be in a NICU’

The Abbott scientist who flagged research on Mead Johnson’s acidified fortifier in 2013, Bridget Barrett-Reis, was later of AL16, the follow-up clinical trial Abbott sponsored, and of .

In a deposition, she was asked why she conducted the study.

“I conducted that study because I thought [the acidified fortifier] could be dangerous,” she said, “and I thought it would be a good idea to find out if it really was because nobody was doing anything about it.”

Elaborating on the thinking behind the study, she testified: “It should not be in a NICU in the United States. That product should not be anywhere for preterm infants.”

In her 2013 email recommending that Abbott conduct a study, Barrett-Reis cited findings by “an independent investigator,” Ann Anderson-Berry, that showed, compared with preterm infants fed an Abbott powder, those on Mead Johnson’s acidified liquid “had slower growth, higher incidence of metabolic acidosis and NEC!!”

Asked about the exclamation points, Barrett-Reis testified in a January 2024 deposition used in the Gill case that she wasn’t excited about the findings. “I am known to put exclamation points instead of question marks and everything anywhere, so I have no idea at the time what those meant,” she testified.

The research that caught her eye in 2013 reviewed patient records from the Nebraska Medical Center. The institution had switched to the acidified fortifier with high hopes but stopped using it after four months because it was concerned about patient outcomes, Anderson-Berry and Nebraska co-authors .

In an interview, Anderson-Berry said she set out to analyze why, during those four months, babies’ growth “fell apart in our hands.”

Abbott was “very pleased” with Anderson-Berry’s findings and paid her to go around the country discussing them, she said.

Metabolic acidosis can be fatal, Anderson-Berry said. But typically it can be managed, she said, adding that she didn’t know of deaths from metabolic acidosis caused by the acidified fortifier.

Research has found that metabolic acidosis “is associated with poor developmental and neurologic outcomes in very low birth weight infants,” according to . In addition, it is “a risk factor for neonatal necrotizing enterocolitis,” the paper said.

Barrett-Reis did not respond to inquiries for this article, including a message sent via LinkedIn and a letter sent to an address that appeared to be associated with her.

In court, Abbott representative Robyn Spilker testified that metabolic acidosis and that nobody should knowingly put kids at risk for getting NEC in an effort to make money.

Before infants were enrolled in the AL16 study, their parents or guardians had to sign consent forms disclosing, among other things, the risks that clinical trial subjects would face.

International ethical principles for medical research on humans, known as the , say each participant must be adequately informed of the “potential risks.”

Questioning Abbott’s Spilker in litigation, plaintiff’s attorney Timothy Cronin said, “Ma’am, despite the hypothesis going in, are you aware Abbott on the informed consent form given to parents that signed their kids up for that study?” Spilker, who identified herself in court as a senior brand manager, said she didn’t know what was on the consent forms.

Through a request under a Kentucky open-records law, Â鶹ŮÓÅ Health News obtained an informed consent form for the AL16 study used at a public institution, the University of Louisville. The form mentioned risks such as diarrhea, constipation, gas, and fussiness. It did not mention metabolic acidosis or NEC.

Â鶹ŮÓÅ Health News also reviewed an informed consent form for the AL16 study used at Memorial Hospital of South Bend. It was largely identical to the one used in Louisville and did not mention metabolic acidosis or NEC.

Cronin, the plaintiff’s attorney, said in an interview that Abbott showed disregard for the health and safety of premature babies participating in the AL16 clinical trial.

“I think it’s unethical to do a study if you know you are subjecting participants in the study to an increased risk of a potentially deadly disease and you don’t at least tell them that,” Cronin said.

Anderson-Berry told Â鶹ŮÓÅ Health News that Abbott was “ethically well positioned” to conduct the AL16 clinical trial because her paper was not definitive.

Yet she said she was unwilling to enroll any of her patients in the Abbott clinical trial because she didn’t want to take the chance that they would be given the acidified liquid.

White, the neonatologist who stopped enrolling patients in the study, defended the decision to conduct it. In an interview, he said it was appropriate to conduct a large, properly controlled clinical trial to see whether concerns raised in earlier research were borne out. The two babies whose serious adverse events he reported to Abbott ended up doing fine, he said.

But White, who went on to be listed as a co-author of the study, told Â鶹ŮÓÅ Health News that parents should have been informed that the risks included metabolic acidosis and NEC.

“In retrospect, obviously, that is something that we, I think, should have informed parents of,” he said.

Abbott did not directly answer questions about the consent forms.

The results of AL16 were in 2018. The conclusion: Infants fed the acidified product — in other words, the Mead Johnson fortifier — had higher rates of metabolic acidosis and poorer feeding tolerance. Plus, poorer “initial weight gain.”

The title of the article trumpeted “Improved Outcomes in Preterm Infants Fed a Nonacidified Liquid Human Milk Fortifier” — in other words, the Abbott product.

Eight of the 78 infants receiving the Mead Johnson fortifier were treated for metabolic acidosis, compared with none of the 82 receiving the Abbott product, the article said. Four infants on Mead Johnson’s product experienced serious adverse events, compared with one on the Abbott product, the article reported.

One infant receiving the Mead Johnson product died — from sepsis, the article said. One had a case of NEC, and infants on Mead Johnson’s fortifier “had significantly more vomiting,” the article said.

However, in a pair of letters to the editor published in the Journal of Pediatrics, the article as hyped. Writers said the article emphasized findings that were .

In its business battle with Mead Johnson, Abbott deployed the study. It produced an annotated copy for its sales force, which was shown in the Whitfield trial.

Abbott’s use of AL16 as a marketing tool worked.

In 2019, when Barrett-Reis applied for a promotion at Abbott, she wrote that the results of the study had been “leveraged to secure whole hospital contracts which have increased hospital share to > 70%.”

Her letter was displayed in a deposition video filed in the Gill litigation.

Internally, Mead Johnson conceded it had been beaten in the fight over fortifiers. In the slide deck for a 2020 national sales meeting, the company said, “Abbott won the narrative.”

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En pocos días, Reynolds estaba tan desesperada que ella y su esposo tuvieron que sujetar físicamente a Jonah para obligarlo a tomar el remedio, echándoselo en la garganta mientras él gritaba de dolor.

“Nos rompió el corazón”, contó Reynolds, que en ese momento vivía en Georgetown, Kentucky. “Y recuerdo que pensé que no debería tener que llegar a eso”.

Reynolds no pudo encontrar un dentista con una cita disponible que pudiera atender a Jonah, que es autista y a menudo se resiste a los exámenes dentales por hipersensibilidad y ansiedad. Durante cinco días, Reynolds llevó a Jonah dos veces a una sala de emergencias cercana, mientras el niño lidiaba con un dolor persistente y fiebre por lo que probablemente fuera un diente infectado con un nervio expuesto.

En la sala de emergencias no había dentistas; las dos veces la familia regresó a casa solo con analgésicos y una bolsa de hielo.

En todo el país, cada vez más niños llegan a las salas de emergencias por problemas dentales prevenibles. Dentistas, higienistas e investigadores atribuyen esa tendencia a la falta de profesionales de odontología pediátrica en zonas rurales y a un deterioro de la higiene bucal desde la pandemia de covid-19.

Decenas de miles de niños terminan en el hospital por emergencias dentales cada año, según Melissa Burroughs, directora sénior de políticas y defensa del paciente de la organización nacional sin fines de lucro CareQuest Institute for Oral Health.

Las visitas a salas de emergencias por problemas dentales no relacionados con lesiones físicas aumentaron en niños menores de 15 años entre 2019 y 2022, según un informe publicado a finales del año pasado por CareQuest.

Los datos locales reflejan esa tendencia nacional.

En el Hospital de Niños de Colorado, en el área de Denver, los casos dentales no traumáticos —como caries o infecciones de encías— atendidos en la sala de emergencias aumentaron un 175% entre 2010 y 2025, según Sarah Bonar, vocera del hospital.

En Kentucky, donde vive Jonah, las visitas de niños a salas de emergencia por problemas dentales aumentaron un 72 % entre 2020 y 2024, según los registros del estado.

Los cambios de política ejecutados por el gobierno de Donald Trump podrían empeorar la tendencia.

La ley de reconciliación presupuestaria federal de 2025 impulsada por el presidente, conocida como One Big Beautiful Bill Act, pidió recortes de miles de millones de dólares a Medicaid, lo que podría obligar a los estados a limitar o eliminar la cobertura dental del programa de salud pública para personas con bajos ingresos o con discapacidades.

Nuevos requisitos de elegibilidad de Medicaid en algunos estados podrían afectar el acceso de los niños a la atención dental, aunque el programa les garantiza esa cobertura. Investigaciones muestran que cuando los padres pierden Medicaid, incluso los niños que mantienen su cobertura tienen más probabilidades de tener y de ir al dentista.

La administración Trump también ha promovido el escepticismo sobre el flúor. muestran que el flúor en el agua potable y los tratamientos tópicos con flúor previenen y reducen de forma importante la caries dental.

En meses recientes, la Administración de Alimentos y Medicamentos (FDA, por sus siglas en inglés) contra el uso de suplementos de flúor y la Agencia de Protección Ambiental (EPA, por sus siglas en inglés) sobre “posibles riesgos para la salud del flúor en el agua potable”.

El secretario de Salud y Servicios Humanos, Robert F. Kennedy Jr., ha llamado al flúor un “” y un “”. Un estudio de 2025 en JAMA Pediatrics vinculó niveles altos de flúor con un coeficiente intelectual más bajo en niños, pero solo con concentraciones del nivel recomendado en el agua potable pública.

, un dentista pediátrico en la University of Washington que estudia la reticencia al flúor, teme que las posturas anti flúor erosionen aún más la confianza en los tratamientos con flúor.

Desde el comienzo de 2026, legisladores en por lo menos 15 estados han presentado proyectos de ley para prohibir o limitar el flúor en el agua potable pública. Utah y Florida se convirtieron en 2025 en los primeros estados en aprobar esas prohibiciones.

“¿Eso va a tener un efecto en las tasas de caries? Absolutamente”, sostuvo Chi.

Aumentan los casos dentales graves

Las dentistas pediátricas Katherine Chin y Chaitanya Puranik dijeron que están atendiendo a más pacientes como Jonah en el hospital infantil de Colorado. Los casos graves también se han vuelto más frecuentes. Puranik agregó que antes, por lo general, veía pacientes con una sola caries, pero ahora a menudo llegan con caries en toda la boca.

Durante la pandemia, muchos consultorios dentales . Además, estudios muestran que los niños también , un factor de riesgo importante para los problemas dentales.

Las caries graves que llevan a la extracción de dientes pueden afectar el y, a veces, causar problemas a largo plazo para o .

Millones de personas viven en zonas de Estados Unidos donde , con pocos dentistas a una distancia razonable en auto. Además, según la American Dental Association, solo atiende a pacientes de Medicaid, debido a las bajas tasas de reembolso, que en promedio son de lo que cobran habitualmente.

Los niños con discapacidades intelectuales o del desarrollo pueden tener aun más dificultades para acceder a atención dental de calidad.

Pocos dentistas generales tienen suficiente formación pediátrica para atender a niños con discapacidades como Jonah, que se agobian con facilidad o necesitan sedación para un examen, una organización sin fines de lucro de información de salud que incluye a Â鶹ŮÓÅ Health News.

tienen necesidades especiales de atención médica, y esos niños tienen de no tener cubiertas sus necesidades dentales. Sus padres también de tener problemas para .

Cuando era más pequeño, Jonah no dejaba que sus papás le cepillaran los dientes. Esto le generó caries en sus dientes de leche, explicó su mamá.

Después de la primera visita de Jonah a la sala de emergencias, Reynolds encontró un dentista general que tenía una cita disponible. Pero, a diferencia de un dentista pediátrico capacitado, dijo, el dentista no supo cómo examinar a Jonah de una forma que él pudiera tolerar y no estaba preparado para sedarlo. Jonah se fue sin tratamiento y pronto, cuando volvió la fiebre, regresó a la sala de emergencias.

Las salas de emergencias rara vez ofrecen soluciones

, pediatra en el condado de Washington, en Maine, aseguró que está viendo “las caries más horribles” en Down East Community Hospital.

Las salas de emergencia a menudo no están preparadas para tratar problemas dentales, explicó Weitz. Como a la que fue Jonah en Kentucky, Down East no tiene dentistas entre su personal. Weitz a menudo termina recetando antibióticos como medida temporal. “Pero un mes después, los pacientes regresan porque la situación vuelve a agravarse”, dijo Weitz.

Como posible solución, estados como Maine y Alaska están proponiendo usar fondos del , dotado con $50.000 millones, para desarrollar la fuerza laboral de salud bucal o crear centros especializados de atención dental que puedan atender mejor y más rápido a niños con necesidades especiales de atención médica.

Pero esas iniciativas no resolverán la pérdida de cobertura que se anticipa por  los recortes a Medicaid.

El año pasado, California otorgó $47 millones en subvenciones estatales para desarrollar o ampliar más de 120 centros odontológicos destinados a atender a pacientes con necesidades especiales de atención médica.

La emergencia dental de Jonah le costó a Reynolds una semana sin trabajar en su empleo como peluquera de perros y a Jonah tres días de tercer grado, además de los cientos de dólares que tuvieron que pagar de su propio bolsillo.

Finalmente, Reynolds encontró a un especialista en cirugía oral que le extrajo el diente. Pero incluso eso salió mal. Cuando Jonah se alteró por el pinchazo de una aguja, el cirujano amenazó con sujetarlo por la fuerza, contó Reynolds. Agregó que el profesional se fue rápidamente después del procedimiento sin darle un diagnóstico claro de qué había causado el dolor de Jonah.

La extracción terminó con el dolor de muelas, pero Reynolds opinó que más profesionales deberían saber cómo manejar casos como el de Jonah, con más sensibilidad hacia las familias.

Cuatro años después, todavía sigue fresco en su memoria el momento en que tuvo que obligar a Jonah a tomar el medicamento para el dolor. “Eso nunca se me va a olvidar”, concluyó Reynolds.

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Sam Walker, 35, has severe autism and other disabilities. He is deaf and cannot speak. Sometimes when he’s frustrated, he hits himself or others.

Medicaid provides about $8,500 a month for health workers who visit his apartment in the basement of his parents’ home. The staffers help him with everyday tasks, including dressing, bathing, and eating. They also take Walker on outings, such as dining at restaurants, volunteering at Goodwill, and exercising at a recreation center or on park trails. They stick to a strict routine, which soothes him.

His parents say that without the in-home services, their son would need to move to a specialized residential facility in another state. Sending him away would break their hearts and cost taxpayers much more money. They strive to keep him home because they know change makes him anxious.

“The last thing I want is to put him into some kind of care facility, where he’ll just get kicked out,” said his mother, Leisa. The Iowa Department of Health and Human Services did not respond to Â鶹ŮÓÅ Health News’ questions about the Walkers’ case.

Federal Cuts Raise Pressure

Patient advocates say state administrators in Iowa appear to be reining in Medicaid spending by cutting what are known as home and community-based services for people with disabilities, and they’ve heard of multiple families facing battles like the Walkers’.

Disability rights advocates expect the pressure to intensify as states respond to reductions in federal Medicaid funding called for under the Trump administration’s signature tax and spending law, which passed last year.

June Klein-Bacon, CEO of the Brain Injury Association of Iowa, said the cuts and proposed rule changes appear to be part of a quiet attempt to save money in response to the state’s budget deficit and expected reductions in federal Medicaid funding.

Medicaid, jointly financed by the federal and state governments, covers people with low incomes or disabilities. Walker is one of served by “Medicaid waiver” programs, which pay for care that allows people with disabilities or who are at least 65 to live at home.

Unlike most parts of Medicaid, waiver programs are optional for states. Idaho’s governor noted that fact in January, when he suggested legislators consider cutting them. Disability rights groups fear other states will do the same. Leaders in , , and have considered such cuts this year.

Leisa Walker has heard Trump administration officials claim the national Medicaid cuts are intended to reduce waste, fraud, and abuse. That’s not how it will play out, she said. “These are real people, real families, and this causes real suffering when you do this to people,” she said. “It’s a very scary time.”

a private insurance company that manages Sam Walker’s Medicaid benefits, intends to cut his in-home care coverage by about $3,200 per month, his mother said. Company leaders told a judge they are following state officials’ direction, but they did not dispute Leisa Walker’s math.

Walker has been on the waiver program for three decades. It covers assistance from workers known as “direct service providers” — one of whom has been with him for 25 years. His parents receive no pay for the hours they spend caring for him when the aides aren’t working.

On a February morning, Leisa and Kent Walker drove an hour and a half to Des Moines for an appeal hearing. An administrative law judge sat behind a wooden desk in a conference room as the Walkers and their lawyer faced off against three representatives from Iowa Total Care, a subsidiary of the national insurer Centene Corp.

Leisa testified that her son is 6 feet tall and weighs 230 pounds. Although he knows some sign language, he has trouble communicating, she said. When he becomes frustrated or his routine is interrupted, he sometimes wails and hits himself or other people. “It’s devastating to watch,” she testified.

He’s not a bad person, she said. “He doesn’t understand how strong he is.”

She said her family would try to keep his main caregiver employed under the planned Medicaid reduction but would have to drop others who cover nights and weekends. She said no residential facility near their southern Iowa home could address her son’s complicated needs. She said a case manager told her that a Florida facility might be the closest one that could safely handle him.

Leisa Walker testified that the state’s Medicaid program would pay about $22,000 per month to put him in an institution, more than double what the program spends on his home care.

Sam Walker’s longtime psychiatrist, Christopher Okiishi, testified that Walker’s family and their support staff spent years developing a “fragile” but stable existence for him.

Lori Palm, a senior manager for Iowa Total Care, testified that Sam Walker gets about 16 hours of daily assistance financed by Medicaid. Palm said much of that time amounts to “supervision.” She said state officials recently advised her company that the program should pay mainly for “skill-building” time, not supervision.

The Walkers showed the judge a 2018 document in which a previous Iowa Medicaid director stipulated that supervision of people with disabilities is an allowable service for workers paid under the program.

Judge Rachel Morgan asked the Iowa Total Care representatives if the recent policy change was made in writing by the state Department of Health and Human Services. They said it was not and that they couldn’t specify who at the department had given them the new guidance.

The judge suggested during the hearing that for someone like Sam Walker, learning to regulate emotions could be an important form of skill-building. Three days later, the judge ruled in the Walkers’ favor, writing that the insurer’s attempt to cut care hours was improper. The insurer appealed the decision to the director of the Iowa Department of Health Human Services, who could overrule it. The dispute could eventually wind up in district court.

Iowa Total Care and the state Department of Health and Human Services did not respond to questions about the reports that many other Iowans with disabilities face reductions in care hours covered by Medicaid. Department spokesperson Danielle Sample said in an email that the agency supports home and community-based services, which, she noted, help “states save money by avoiding expensive long-term facility care.”

Spokespeople for the federal Department of Health and Human Services, which oversees Medicaid nationally, did not respond to a request for comment on the issue.

Medicaid waiver programs started in the 1980s, after President Ronald Reagan heard about an Iowa girl with a disability who was forced to live in a hospital for months because Medicaid wouldn’t pay for home care. The Republican president thought it was outrageous that the girl, had to live that way, even though home care would have been cheaper.

Members of Congress approved allowing states to use their Medicaid programs to pay for in-home care. But they made the change optional, to offer states flexibility and encourage innovation.

Designating such spending as optional “waiver programs” also made the change more politically palatable, said Kim Musheno, senior director of Medicaid policy for , which represents people with intellectual and developmental disabilities.

Prospects were much different for babies born with serious disabilities before the change, Musheno said. “Doctors instructed families to forget they existed, and to put them in an institution.”

Waivers Have Been Cut Before

All states have Medicaid waiver programs, but benefits and the number of people covered vary significantly. Applicants often wait months or years to get into the programs because of limited funding. More than 600,000 Americans were on waiting lists or “interest lists” for waiver services in 2025, , a health information nonprofit that includes Â鶹ŮÓÅ Health News.

Disability rights advocates and care providers have fought for decades to maintain funding for the programs, but a national leader said the threat feels especially severe now.

“When Medicaid is cut, people with disabilities are at the center of the impact,” said Barbara Merrill, CEO of the American Network of Community Outcomes and Resources, which represents agencies that care for people with intellectual disabilities or autism.

That’s what happened after Congress reduced Medicaid funding in 2011, according to a recent paper published by .

States could again rein in waiver programs by limiting enrollment, reducing covered services, or cutting pay for caregivers, who already are in short supply.

However, states that try to cut the in-home care programs could face legal challenges, Musheno said. The U.S. Supreme Court declared in 1999 that people with disabilities have a right to live outside of institutions if possible. The decision, in the case of , has been cited in lawsuits against states that fail to provide care options apart from nursing homes and similar facilities.

Several Iowans who belong to a Facebook group for Medicaid participants have posted in recent weeks that their families were notified of impending cuts in coverage of home care services for people with disabilities.

Sam Walker’s main caregiver, Andy Koettel, has worked with him since Walker was in fourth grade. Koettel, who works full-time, knows how to keep Walker calm in most situations and soothe him during a blowup. Their relationship took years to build, and it is a key reason Walker can continue to live at home with his parents, Koettel said.

“If I was not there, it would be incredibly difficult for all of them,” he said.

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Services at risk include the 24/7 care that allows a 39-year-old with cerebral palsy to live independently; the in-home caregiving that lets a 26-year-old with brain damage from a hemorrhage at birth stay in his family home; and private duty nursing for a 19-year-old with cerebral palsy who has qualified for hospice care for complications including pulmonary decline from a spinal cord injury.

Concerns for such care arose when Idaho Gov. Brad Little, a Republican, proposed cutting $22 million from Medicaid — the joint state-federal health insurance program for people with low incomes or disabilities — to balance the state budget. Home- and community-based services such as caregiving, nursing, and residential rehabilitation are optional under Medicaid, and Little for the cuts.

Across the country, people with disabilities and their families are confronting similar plans to cut Medicaid as states grapple with budget challenges compounded by congressional Republicans’ One Big Beautiful Bill Act, which is expected to reduce federal spending on Medicaid by nearly $1 trillion over the next decade.

A four-hour town hall on the proposal in Idaho drew to the state capitol. Colorado lawmakers heard from concerned residents before pausing a pay cut for family caregivers. In Missouri, families raised alarms about a to services for people with disabilities.

“We saw this coming. We’ve tried to educate members of Congress,” said Kim Musheno, the senior director of Medicaid policy at The Arc, a national disability rights organization.

“Whenever there’s pressure on state budgets like those that are caused by the One Big Beautiful Bill Act, they go after Medicaid, and then they go after optional services,” Musheno said.

Many cuts included in the GOP bill, which President Donald Trump signed into law in July, haven’t yet taken effect, but the law is already impacting state budgets, particularly in states that align their tax rules with federal regulations.

Conforming to the federal law is expected to cost Idaho this year. Colorado lawmakers were called into a special session last year to address a created by the law. Those shortfalls — combined with national trends of increased Medicaid costs, , and further tax cuts passed by some state legislatures — are putting pressure on Medicaid programs.

Still, Musheno said she was surprised by how quickly Idaho targeted services for people with disabilities. “I couldn’t believe it.”

Little had already ordered Medicaid cuts last year as part of an effort to address a budget shortfall after years of and increasing program costs. That led to a in September for medical providers’ work with Medicaid patients. Little’s new proposed would be on top of those previous rate cuts.

“We were told by the legislature that they want to save some money in Medicaid, and so what we put together was a list of seven different options that were there,” Little said at a Feb. 17 press event. “There’s only so many levers we can pull in the Medicaid area that doesn’t jeopardize our funding.”

‘We Just Hold Our Breath’

Amber Grant said any further cuts for the nursing agency that provides care for her 19-year-old son, Matty, could be catastrophic.

He was born with brain damage and cerebral palsy before suffering a spinal cord injury when he was 10. In 2024, he briefly received hospice care before the family decided to work with a palliative care team to help him live out his life.

Through Medicaid, Matty qualifies for 120 hours of in-home private duty nursing care per week. But because of a nursing shortage, he typically receives only about half of that care, and Grant said it would get worse if the nursing agency is subjected to any more reductions.

“The reality is that any of us at any point in time could become disabled,” Grant said. “What kind of quality of care would we want?”

The potential cuts run even deeper for Grant’s family. Through another optional in-home Medicaid program, she and her husband, Jason, are both eligible to be paid for caring for their older son, Luke. The 24-year-old has autism, epilepsy, and an autoimmune condition and requires supervision 24 hours a day.

Jason primarily works as a self-employed remodeler, but Grant’s only income is the $21 an hour she gets to care for Luke. But she can be compensated only for the time she has him one-on-one, meaning when someone else is taking care of Matty, such as Jason or his nurses.

Grant said keeping up with the family’s house payments will be nearly impossible if they lose that income, and she said it seems like only a matter of time before some or all of her sons’ in-home care is disrupted. Idaho is in federal Medicaid funding over the next decade as a result of the One Big Beautiful Bill Act, according to Â鶹ŮÓÅ, a national health information nonprofit that includes Â鶹ŮÓÅ Health News.

“We just hold our breath every legislative session,” Grant said. “I feel like I’m always trying to prove their worth, to prove their value, and it’s exhausting.”

State Rep. Josh Tanner, a Republican who co-chairs the legislature’s powerful budget committee, said he opposed cutting home- and community-based services, but it was up to a separate committee and workgroup to finalize cuts to the Medicaid program.

Medicaid covers . , the federal government picked up 80% of the state program’s $3.6 billion tab in 2023. Tanner said tapping the state’s $1.3 billion in reserves to fill the $22 million gap was a nonstarter.

“We don’t really have an overall revenue problem in the state right now,” Tanner said, “but we do have a spending problem, and part of that has been Medicaid in general.”

Senate Minority Leader Melissa Wintrow, a Democrat on the budget committee, disagreed, pointing instead to five years of tax cuts passed by the Republican supermajority that have in lost revenue, including last year.

“What we need to do is restore the revenue that we cut and put it back and admit the mistake and stop harming people and the very services that Idahoans depend on,” Wintrow said.

‘It Keeps Me Awake at Night’

It’s also unclear whether cuts to community-based care would save Idaho money, something Tanner acknowledged. For optional Medicaid programs to be approved by the federal government, states must demonstrate that they are cheaper than existing alternatives, such as being cared for in a nursing home. Cutting community-based care would probably push many people with disabilities into more costly institutional care.

That’s what Toni Belknap-Brinegar fears for her son Antahn Brinegar.

A brain hemorrhage at birth left Antahn, now 26, with severe brain damage, physical and developmental issues, and a seizure disorder. Belknap-Brinegar is his primary caregiver, but she realized when Antahn was 8 or 9 that she wasn’t physically capable of caring for her growing son. Now 200 pounds, he has two paid in-home caregivers, Belknap-Brinegar said, both single mothers whose own livelihoods may be in the balance amid talks of cuts.

Nursing homes aren’t equipped to properly care for Antahn, Belknap-Brinegar said. He needs to be constantly monitored for seizures. He can’t communicate his needs well, for example when he has to go to the bathroom.

“Without the services that he has and the care that he gets now, he would end up in a care center, and frankly, he would die,” Belknap-Brinegar said.

While home and community-based services are technically optional parts of Medicaid, a required states to provide them to people with disabilities when appropriate. A Justice Department investigation in the waning days of the Biden administration found that Idaho was into nursing homes, in violation of that ruling. The Trump administration is attempting to slash access to the lawyers who help ensure those rules are followed.

Documents also show the state agency that oversees Medicaid does not think the state has enough space in its residential facilities to care for all the people whose home- and community-based services could be cut under the governor’s plan.

That’s Ned Fowkes’ worry for his 39-year-old daughter, Eva.

A brain bleed when she was an infant left Eva with severe cerebral palsy and significant developmental disabilities. Although Eva is unable to speak, she has a “wonderful awareness,” Fowkes said, and is able to communicate through her expressions and convey her preferences.

After being cared for by her parents for 21 years, Eva was eager for the chance to move into a supported living home, where she could get round-the-clock care while living with another person with disabilities.

“Like most 21-year-olds, she probably wanted to hit the road and not be under the roof of her parents anymore,” Fowkes recalled. “She’s always been courageous in that sense.”

Fowkes and his wife visit at least three times a week, but at 79 and 76, they are no longer able to provide their daughter’s direct care.

The staff at Eva’s home already barely make a living wage, Fowkes said. Cuts to the program that pays for her care would trigger more turnover — or, worse, shutter the agency that staffs the home.

“I don’t know what we would do,” Fowkes said. “Eventually we’d lose our home. We would be bankrupt. Where would Eva go? Where would her roommate go? Who would care for them?”

“It keeps me awake at night,” he said. “Believe me.”

Â鶹ŮÓÅ Health News’ Hayat Norimine contributed to this report.

Â鶹ŮÓÅ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Â鶹ŮÓÅ—an independent source of health policy research, polling, and journalism. Learn more about .

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