The Department of Health and Human Services is seeking data from little-known state systems that allow hospitals and clinics to exchange detailed, identifiable patient information, Â鶹ŮÓÅ Health News has learned.

In private meetings, some public health leaders have objected to giving Kennedy’s team access to such data, raising doubts that it’s legal or that the information would even be useful.

They have also expressed concerns about allowing the federal government to peer into the minutiae of Americans’ medical records, which could mean viewing anything from doctors’ notes to prescription history. HHS has offered no insight into how it will protect or handle the personal health information it obtains.

But Kennedy told Â鶹ŮÓÅ Health News that medical records are key to investigating the cause of autism, vaccine safety, and chronic diseases. And millions of dollars in grant money has poured into a Nebraska nonprofit that has assisted Kennedy’s effort, according to state records.

He and his advisers have been frustrated that federal access to Americans’ medical records has been limited.

“We need a good health record system, and one of the things that really surprised me most when I came into office is that there is — that the systems are broken,” Kennedy said in a May interview. “We’ve had to go to the states and, luckily, we’ve got a lot of cooperation from the states, but we now have databases together that we can actually do the studies on. Those studies are in motion.”

HHS has not publicly announced any new projects involving medical records and autism or vaccine research. Kennedy faced blowback last year when he proposed compiling the medical records of people with autism to create a federal disease registry — which health department officials .

But Kennedy said in May, “We have a whole pipeline of studies that will be done over the next year.”

Though the White House has steered Kennedy away from further changes to U.S. vaccine policy ahead of November’s crucial midterm elections, President Donald Trump has regularly echoed Kennedy’s doubts about vaccine safety and last week signed an executive order calling for the U.S. to reduce the number of vaccines recommended for children.

Kennedy’s political appointees and allies — including William “Reyn” Archer III, a former Texas health official and whom Kennedy hired as a senior adviser — have led the initiative for the health department to collect and examine medical records.

Federal officials met with leaders of the state-run health information exchange systems several times over the past year and asked how the personal medical records they maintain could be used for vaccine research, according to seven people who participated in the discussions or were familiar with them.

Craig Behm, who runs the Maryland health information exchange, said Kennedy’s team asked about how the vast trove of medical records they store from hospitals and health systems could be used to study vaccines.

“If this administration wants to conduct research on the effectiveness of vaccines, are you saying you all can help us conduct that research?” Behm recalled being asked by a top official at HHS’ health information technology office.

Last June, Behm and leaders of other state exchanges met with Kennedy’s top advisers to discuss sharing more medical data with federal agencies. The state organizations followed up with a pitch in October for a new surveillance system that would give the federal health department “real-time, 24-hour data feeds on opioid and chronic disease trends” within a year, according to a presentation reviewed by Â鶹ŮÓÅ Health News. Under the proposal, HHS would get data from 90% of the population’s medical records by 2028.

Administration officials regularly asked during the meetings how the records could be used to monitor vaccine safety. Kennedy has rejected the federal government’s current vaccine-monitoring systems; decades of research has shown immunizations are safe and effective for most people.

“Vaccine safety, or whatever words you want to use, has come up pretty consistently in those conversations,” said John Kansky, CEO of the Indiana Health Information Exchange.

Kansky sees the potential value of sharing information from the exchanges for public health but is worried about the focus on vaccines: “It’s like, oh man, I wish you would have picked something that pushed fewer buttons for people.”

A System To Monitor Chronic Disease

Nearly every state has at least one health information exchange — often regulated by state laws and run by private companies or nonprofits — that enables hospitals and health systems to immediately share patients’ medical records with one another. The systems allow doctors and nurses to quickly pull up nearly anyone’s medical history and records at emergency rooms or share after-visit summaries and notes with patients’ primary care providers, for example.

In certain circumstances — most often dealing with cases of infectious diseases such as measles or flu — the exchanges notify public health authorities, like the state health department or the Centers for Disease Control and Prevention. Using the exchanges for broader public health purposes is not an unusual idea in itself. But it can present privacy, legal, and ethical complications, health officials say.

In the end, Behm said his organization in Maryland declined to share more data with the federal government for vaccine research, noting that sharing medical records for that purpose would require a rash of approvals from hospitals, state political leaders, and research boards. Any new data-sharing agreement should also have a clear, detailed framework outlining what would be shared and with whom, he added.

“A number of us said, ‘We can’t do anything our agreements don’t allow us to do, so no,’” Behm said. Indeed, most health information exchanges have contractual restrictions on who can access clinical data.

Kansky said Indiana is still weighing whether to provide additional data for Kennedy’s project, and that nothing has yet been shared.

HHS spokesperson Emily Hilliard did not answer questions about how many states are participating in Kennedy’s project, what new data the agency is collecting, how much the federal government is spending on the initiative, how it is protecting patient privacy, or who has access to the data.

“HHS is strengthening public health surveillance and modernizing data systems to better understand and combat the childhood chronic disease epidemic as part of Secretary Kennedy’s Make America Healthy Again agenda,” Hilliard said in an emailed statement. “Americans deserve robust systems to monitor the drivers of chronic illness.”

Kennedy has asserted, without evidence, that vaccines can cause chronic illness.

A Kennedy Partner in Nebraska

At least one state has been cooperative.

The former leader of Nebraska’s state health information exchange has led the effort to share data from medical records with the federal government.

Jaime Bland, former CEO of CyncHealth — the Nebraska health information exchange used by in the state — said several states are looking to “open up channels” to provide more analysis to Kennedy’s team.

“They’re looking at the data differently and providing some insights back to the CDC,” Bland told Â鶹ŮÓÅ Health News.

Bland was among a group who proposed that CyncHealth would help kick off the initiative, according to a 43-slide PowerPoint presented to federal officials during an October meeting.

CyncHealth and other state health information exchanges would “ingest data from hospitals, clinics, laboratories, pharmacies, payers, and social services agencies,” then “link claims and clinical records through a master patient index.”

Data from the exchanges “will be deidentified where appropriate,” according to one slide.

The federal government would pay the exchanges for furnishing the records, according to the proposal: $3 a person, annually.

Officials would “frame publicly that this is not a new database, but a federated trust model that delivers real-time data for all HHS missions,” the presentation reads.

After the meeting, Nebraska’s health department was awarded a large grant from the CDC, and CyncHealth in turn got millions of dollars from the state.

On Dec. 19, the CDC announced new funding under its , which sends money to state and local health departments for lab work, health information enhancements, and solutions for outbreaks.

Nebraska’s state health department was awarded $18.7 million — the most of any state last year, though Nebraska is the 38th most populous state. By comparison, Texas received $9.2 million, and California got $10.8 million.

CyncHealth was then awarded three contracts totaling $13.6 million from the state health department just weeks later, on Jan. 9 and Jan. 16, according to a publicly accessible database of state contracts.

Grace McNamara, a spokesperson for CyncHealth, said it retained $2.4 million of the funding for Kennedy’s project; the remaining money was distributed to “other participating states and various vendor organizations for implementation support.”

A former CDC official who was aware of the transaction, but not authorized to speak publicly about it, confirmed the money was intended for CyncHealth to supply data for Kennedy’s initiative to look at vaccines and autism. McNamara said that the “work is focused on improving outcomes related to acute and chronic illnesses.”

“The referenced project is not research, but rather a proof-of-concept project on how health information exchange and public health can work together to improve health outcomes and is not specific to autism,” she said in an emailed statement.

McNamara did not answer questions about what type of medical data is being provided to the federal health department or whether patients’ identifying information is removed.

Bland left her post at CyncHealth — where she was paid nearly — in December. She was named in April as the chief data strategist for the MAHA Institute — a think tank founded by allies of Kennedy and Trump to advance their Make America Healthy Again movement.

Bland agreed with Kennedy that data from state health information exchanges could provide more insight into autism’s causes or vaccine injuries.

“The data is so fragmented, so modeled when it comes to population health and public health, that we lose sight of the individual stories,” Bland said. She told a story she had heard about a woman who had a seizure after receiving the HPV vaccine.

“You know, the vaccine is safe — it absolutely is — but it wasn’t safe for her,” Bland said. “As public health officials, we say the vaccine is safe. But there are cases where it is not.”

Daniel Jernigan, a former top CDC official who left the agency last summer, said he tried to point Kennedy to data that would help the health secretary study vaccine safety and autism.

After 31 years at the CDC overseeing public health surveillance, emerging infectious diseases, and the influenza divisions, Jernigan thought the solution was simple. The secretary could work with researchers to obtain huge databases pulled from health systems nationwide and maintained by major electronic health records companies.

Those databases are deidentified, meaning they don’t include patient names or other information that can identify individuals. Jernigan said Kennedy didn’t seem interested.

Instead, as The New York Times first reported, the health secretary dispatched two top advisers — Archer and Hannah Anderson, his former deputy chief of staff — to the CDC’s headquarters in Atlanta last July to download millions of identifiable patient records directly from the Vaccine Safety Datalink, the system the health agency uses to investigate complications from vaccines. The records, though, were decades old.

Jernigan said the federal government has limited legal authority to access medical records from state health information exchanges. In any case, examining those records may provide a view of a person’s medical history that will not necessarily produce answers to Kennedy’s questions about vaccines and autism.

“If they’re just using the electronic health record data, there are limits to that,” Jernigan said. “If they’re only looking at electronic health record data, all you’re going to get is what was captured in the encounter. It’s not going to be very satisfying.”

Â鶹ŮÓÅ Health News data reporter Maia Rosenfeld contributed to this article.

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And they say an overhaul — less than seven months before states must start enforcing the requirement — will be costly.

by the Centers for Medicare & Medicaid Services dictate many granular details about how the new work requirements will play out. They cover how states should check whether Medicaid enrollees are following the rules, and how people can claim an exemption so that their health benefits don’t hinge on work, community service, or going to school.

Next year, President Donald Trump’s One Big Beautiful Bill Act could require roughly across 42 states and the District of Columbia who receive Medicaid benefits to prove they’re working or participating in a similar activity to keep their health coverage — unless they qualify for an exemption.

Much of the verification will run through state computer systems that assess whether low-income people qualify for Medicaid and other safety net programs — technology often built and run by private companies under contracts routinely worth hundreds of millions of dollars. Many of those systems have a history of errors that can cut off benefits to eligible people.

For months, states have been communicating with federal regulators and rushing to build systems to comply with the looming mandates, said Kinda Serafi, a partner at the Manatt Health consulting and legal firm. The rules released this week represent a “significant policy pivot” from what states were expecting, Serafi said.

“The administration has actually taken what we know to be a tough situation and has just made it even worse,” Serafi said. States had already committed to paying contractors tens of millions to adjust their systems.

After Trump signed his signature tax-and-spending bill into law last July, one of the most significant remaining questions was how much discretion the federal government would give states to define exemptions for people too sick to work. The “medical frailty” exemption allows a person to claim they have a health condition that prevents them from working at least 80 hours a month, as the law requires.

To qualify, a person generally must fit into at least one of five categories: They must be blind or disabled; have a substance use disorder; have a disabling mental disorder; have a physical, intellectual, or developmental disability that significantly impairs their daily life; or have a serious medical condition. States are not allowed to add categories.

Under the new regulations, CMS said having a medical condition alone isn’t sufficient to exempt someone from the work requirements. States must assess “the severity of an individual’s condition” to determine whether they can stay on Medicaid without working — a standard that makes it more difficult for enrollees to meet the criteria.

CMS officials did not list specific conditions that qualify for exemptions, but the agency did say homelessness can’t be a reason to claim that exemption because it is not a medical condition.

To implement the law, states “will have to undo work that they did,” said , deputy director of Princeton University’s State Health and Value Strategies program, which works with state governments on various health coverage issues.

The Trump administration previously acknowledged that the work to upgrade state Medicaid eligibility systems to comply with the law is coming at a cost. In January, top CMS officials said government contractors, including Deloitte, Accenture, and Optum, and reduced rates through 2028 to help states adjust their systems.

The discounts “may be helpful” in some states, but they’re “not going to be helpful across the board” due to variations in state contracts, said , director of the State Health and Value Strategies program.

“Anytime you have to go back and say, ‘Oops, we need to reprogram this one thing,’ there’s a cost,” Howard said.

States were prepared to create lists of conditions and diseases to qualify people for work requirement exemptions, according to health care experts advising them. Mining data to verify someone’s illness was already a tall order for states because the computer systems that determine whether someone is eligible for Medicaid often do not communicate with the systems that track medical claims.

America’s health care payment systems rely on a set of standardized codes that correspond to specific diagnoses.

But there’s no “code that designates that someone is too sick to work — that’s a subjective assessment,” said Rachel Klein, deputy executive director of , a nonpartisan advocacy group for people with HIV. “This is a recipe for disaster.”

The new federal standards pose immediate issues for Nebraska, which launched its Medicaid work requirement on May 1, eight months before the federally mandated deadline. Nebraska handles decisions on medical frailty differently than the Trump administration does.

Nebraska officials had already released a nearly of medical conditions that qualify as exemptions, such as types of cancer, dementia, autism, epilepsy, HIV, and Parkinson’s disease. The state, which relies on government workers to check Medicaid eligibility, doesn’t require a person to prove how sick they are.

But under Trump’s rules, people will have to show their qualifying illness is impeding their ability to work.

Now, Nebraska is “going to have to go back and figure out how to assess whether all of these people are too sick to meet the requirement,” Klein said.

Medicaid enrollees are slated to start losing coverage this summer under Nebraska’s early rollout.

Sarah Maresh, a program director with , an advocacy organization for people with low incomes, said the state should refrain from terminating people’s coverage until next year because of the changes it will need to make. State residents are already confused and scared, she said, and the new rule “makes matters much worse.”

In response to several questions, Jeff Powell, a spokesperson for Nebraska’s Department of Health and Human Services, said the state is reviewing the new federal regulation to determine potential impacts.

The new federal standards will limit people’s ability to attest that they are medically frail starting in 2028 and will require documentation as proof, another change states weren’t expecting, Meuse said. had planned to allow applicants and enrollees to declare conditions themselves to get exemptions, according to Â鶹ŮÓÅ.

Striking the right balance of flexibility was an important part of deliberations when crafting these rules, CMS Administrator Mehmet Oz said on a June 1 call with reporters. “The mantra we kept coming back to was that we’re forgiving, but we’re not foolish,” he said.

Trump officials wrote in the regulation that Medicaid work requirements have “the potential to empower Medicaid beneficiaries” by allowing them to “escape isolation and dependency, build confidence, achieve self-sufficiency and prosperity, and improve health.”

Stephanie Burdick, a leader of the Protect Medicaid Utah coalition, disputed the premise.

“If they want to improve work opportunities or connection and decrease isolation and loneliness, they would be starting job programs and volunteer service programs,” Burdick said. “They wouldn’t just be forcing more administrative burden onto people and then saying that it’s good for them.”

An estimated will become uninsured by 2034 due to Medicaid work requirements, according to the nonpartisan Congressional Budget Office.

But with the new regulations, Howard said, there’s a risk of “that number being even higher.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hospitals Want Guardrails

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Becoming Part of the System

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

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

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

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

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

“Something has to change,” Haynes said.

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

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

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

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

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

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

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

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

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

Â鶹ŮÓÅ is a health information nonprofit that includes Â鶹ŮÓÅ Health News.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Nebraska’s Plan

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

National Mandate

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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HAY SPRINGS, Neb.— The sun was just warming the horizon as Mark Pieper left his house near his cattle ranch on a crisp February morning.

It’s not unusual for the rancher to wake up early to tend to livestock, but at 5:45 a.m. this day his cattle wouldn’t come first. For the past 3½ years, three days a week, Pieper has made an early-morning commute to get dialysis at the nearest hospital.

Pieper lives outside Hay Springs, which has 599 residents, according to a sign at the edge of town. He makes sure not to forget his chocolate-brown cowboy hat before starting up his pickup truck for the half-hour drive to Chadron.

That February morning was one of his last dialysis sessions there before the hospital shuttered the service at the end of March.

“I guess I’ll just bloat up and die in a month,” Pieper remembered thinking when he learned the center was closing, eliminating the only option near his home.

He needs dialysis to survive after cancer treatment damaged his kidneys.

Pieper and 16 other patients relied on Chadron Hospital for the life-sustaining therapy that filters waste and fluid from their blood — a job their failing kidneys could no longer do. Treatment lasts about four hours.

The closure is just one example of the long decline of health care services in rural America, where people have higher rates of many chronic conditions but less access to care than elsewhere.

The Trump administration promised to address this problem, when it launched the $50 billion federal Rural Health Transformation Program in September. It may not be enough to stop the trend.

“[President Donald] Trump says he is going to help the rural health care,” Pieper said. Dialysis “is one thing that we really need here.”

Some patients have moved to live closer to care, including several nursing home residents. Their new facilities may be farther from their families.

Others are making long drives to dialysis centers. Pieper eventually found treatment in Scottsbluff, which, with about 14,000 residents, is the biggest city in the rural Panhandle region of western Nebraska. The hour-and-a-half drive will triple his time on the road to more than nine hours each week.

Jim Wright and his wife reduced their drive time — but are spending more money — by renting a small home near Rapid City, South Dakota, and living there on weekdays so he can get dialysis. Wright said he understands that rural hospitals face financial challenges.

“But we’re talking about something that’s lifesaving. It’s not a matter of, ‘Oh, I would like to be there’” getting treatment, he said. “It’s a case that if you don’t, you die.”

An Influx of Money That’s Out of Reach

Jon Reiners, CEO of the independent, nonprofit Chadron Hospital, wrestled with the decision to end dialysis services. He and several patients said that the closure was announced as the $219 million the state will receive in first-year funding from the .

But the five-year program is aimed at exploring new, creative ways to improve rural health, not to help existing services stay afloat. States can use only up to 15% of their funding to pay providers for patient care.

At least 11 states — Nebraska is not among them — have mentioned using funding for rural dialysis programs, according to a Â鶹ŮÓÅ Health News review of applications. Their ideas include starting a mobile dialysis unit and helping people get treatment at home or in long-term care facilities.

Reiners said Chadron Hospital lost $1 million a year on its dialysis service due to low reimbursement rates that didn’t cover operational costs.

The facility is a critical access hospital, a designation that allows certain small, mostly rural hospitals to get increased reimbursement rates for their Medicare patients. While most of the affected patients were on Medicare, the critical access program doesn’t cover outpatient dialysis, Reiners said.

Reiners said the hospital worked for more than a year to find solutions, such as reaching out to four private companies to potentially take over the center. But he said they all passed after realizing they would lose money.

Nephrologist Mark Unruh said the dialysis closure in Chadron reflects a wider trend of staffing and funding challenges.

“You do end up in situations where you have people who are displaced like this, and it’s just sad,” said Unruh, chair of the Internal Medicine Department at the University of New Mexico.

People in rural America face significant disparities in kidney health and treatment, published in 2024 in the American Journal of Nephrology. They’re and face after diagnosis, according to data from the National Institutes of Health.

The best way to address this is to focus on prevention, Unruh said. He pointed to a that helps primary care doctors in rural and other underserved areas prevent end-stage renal failure.

Another idea, Unruh said, is boosting the rate of kidney transplantation for rural patients. He’s looking at whether it’s helpful to “fast-track” tests patients need to get approved for a transplant by scheduling all of them over a couple of days to limit travel time.

Unruh said the U.S. health system also needs to recruit more staff who can train patients and their caregivers to administer dialysis at home.

Exploring the Option of Home Dialysis

Rural dialysis patients are more likely than urban ones to get home dialysis, according to . In 2023, the rate was nearly 18% for rural patients and about 14% for urban ones.

One type of home dialysis requires surgery to get a catheter placed in the abdomen and . The other kind requires . The nearest facility to Chadron that offers training for the first option is in Scottsbluff. The nearest that offers training for the latter kind is three hours away in Cheyenne, Wyoming.

Pieper said doctors told him he’s not a candidate for home dialysis or a transplant. The Panhandle has a nonprofit, rural transit system, but its schedule won’t work for Pieper. He said that leaves him with no choice but to get treatment in Scottsbluff, a 200-mile round trip.

It takes Linda Simonson even longer — more than four hours round trip — to drive her husband, Alan, from their ranch to his treatment in Scottsbluff.

Linda sat in the waiting room with a yellow legal pad during one of Alan’s final treatments in Chadron. The paper was scrawled with phone numbers of politicians to call and driving distances to dialysis centers in the region. She said facilities closer to their ranch either don’t have room for new patients or lack good spots along the route to take a driving break in bad weather.

“It’s just unreal,” she said.

She said even if Alan took a bus, she’d have to ride along to support him during the trip and his treatment.

Jim and Carol Wright, the couple staying near Rapid City on weekdays, said they can’t afford to rent a second home forever. Their weekly commute is already taking a physical and emotional toll. They said they’ll eventually have to move to a bigger city, giving up the house they love in the scenic Nebraska National Forest.

Carol said she feels for the dialysis staffers in Chadron, who are wonderful.

“It just doesn’t seem right to sacrifice one unit that’s so vital,” she said while standing next to a pile of moving boxes stacked inside their rental.

The Wrights wrote letters to politicians and hospital leaders to share their concerns and ideas for keeping the unit open, including using the federal rural health funding.

Simonson said she spoke with aides for the governor and her state representatives but none of the leaders called her back.

“It feels like they don’t know that we exist at this end of the state,” she said.

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And CEO Brad Meyer fears times will soon get worse for the clinic and its 21,000 patients. That’s because Nebraska is set to become the first state to require certain Medicaid enrollees to work or lose their coverage under new rules in President Donald Trump’s One Big Beautiful Bill Act.

“This will have a huge financial impact on us,” Meyer said. On May 1, seven months before the law requires, the state will begin imposing work requirements on eligible adult Medicaid enrollees.

Most of Bluestem’s patients are covered by the government program for people with low incomes or disabilities. Meyer estimates up to 15% of them may be kicked off Medicaid, which could cost his center about $600,000 a year. That could mean cutting services or staff.

Nationwide, about 17,000 federally funded community health centers like Bluestem . They’re bracing for fallout from the law Trump signed last year, which could cost the nonprofit health centers $32 billion collectively over five years, according to the Commonwealth Fund, a health research foundation.

Health centers receive annual federal grants but depend on Medicaid reimbursements for patient care as their largest source of revenue. The government insurance program covered about half of their roughly 33 million patients in 2024.

Commonwealth estimates that 5.6 million patients of health centers will lose Medicaid coverage over the next decade as most states enact work requirements — a provision of Trump’s law that requires nondisabled enrollees to work, volunteer, or perform another approved activity for at least 80 hours a month.

Most are expected to lose coverage not because they don’t work but because of paperwork errors, like failing to document their hours or verify that they qualify for an exemption.

Health center officials say there’s no easy way to make up for the lost revenue other than cutting staff or services, which would affect all their patients. The cuts will coincide with an expected increase in patients, as people who lose coverage turn to the clinics for low-cost care.

By law, health centers are required to treat all patients regardless of their ability to pay.

A Double Whammy

Overall, about 10 million fewer Americans will have insurance by 2034, the Congressional Budget Office estimates, both because of Trump’s law and congressional Republicans’ decision to scale back premium subsidies for Affordable Care Act health plans.

“We are incredibly worried,” said Jeffrey McKee, CEO of Community Health Centers of Burlington in Vermont. His clinics treat about 35,000 patients a year, nearly a third covered by Medicaid.

He predicts a surge in uninsured patients will cost another $3 million in lost revenue. That revenue crash could imperil street medicine programs and home care for patients 65 and older, he said.

In 2024, community health centers because of rising costs and the expiration of covid pandemic-era relief funds, according to a Â鶹ŮÓÅ analysis.

Centers with high rates of uninsured patients typically struggle more financially, while some centers are sustained through private donations.

People without insurance — who made up about 18% of all health center patients in 2024 — pay on a sliding scale. Those amounts are a fraction of what insurers pay.

The new Medicaid work requirements apply to Washington, D.C., and 40 states that expanded Medicaid eligibility under the ACA, and to adults with incomes up to 138% of the federal poverty level — $22,025 for a single person this year.

Republicans say the work requirements will nudge people into the workforce and help preserve Medicaid for children and people who are pregnant or have disabilities. Studies by Â鶹ŮÓÅ and others show most enrollees already work, go to school, or have a health condition that prevents them from working.

Nebraska Is First Up

The Trump administration approved Nebraska’s early launch of its work requirement program, which could affect about . State Medicaid officials say they plan to use state and national databases to check whether people are already working or meeting an exemption so that most won’t have to do anything to keep coverage. But thousands will need to prove they satisfy the requirements.

At Bluestem in Lincoln, Meyer worries many of his Medicaid patients won’t take the steps needed to keep coverage.

Angelisa Corum, 57, said she loves the care she has gotten from her regular doctor at Bluestem Health over the past dozen years, particularly in dealing with breast cancer. “I am cancer-free, and they helped me get through that,” she said.

She said the care was the same when she was covered by her husband’s commercial insurance through his employer and when she was on Medicaid while he wasn’t working.

The work requirements are just one part of the Republican law passed last year that could hurt the health centers. It also requires more frequent eligibility checks for adults enrolled under Medicaid expansion, which advocates say could also lead people to lose coverage. Many states now require eligibility checks only once a year.

The law also reduces overall federal Medicaid funding to states, which may prompt them to cut reimbursements to centers and other health providers.

The National Association of Community Health Centers, the largest advocacy group for the clinics, has tried to walk a tightrope, warning about impending cuts from the law while still working with the Trump administration. The group praised Congress for increasing base grant funding for health centers in the federal budget approved in January.

Kyu Rhee, CEO of the national association, said the clinics enjoy strong bipartisan support in Washington despite the Medicaid cuts.

He has met with Trump administration officials to discuss how health centers can play a role in keeping people from losing coverage due to work requirements. He said they can help meet other priorities of the administration’s, like improving American diets, expanding primary care, and focusing on chronic diseases — though it’s unclear how any of that would result in more funding.

To further show the reach of health centers, the association recently funded a study that found 52 million people visited the clinics over a three-year-period. “It makes a statement we serve a lot more Americans than those from just a single year,” Rhee said.

Health center officials are hopeful they will get some of the funding from the included in the GOP-passed law. States will begin spending the first tranche of that money this spring.

Rhee said he is encouraged that states will have technology to help tap into databases to verify many enrollees’ work status or health conditions to meet “medical frailty” rules that could help them avoid being disenrolled.

Others are less optimistic.

“Health centers are bracing for a major financial impact,” said Sara Rosenbaum, a health law and policy professor at George Washington University and Medicaid expert who co-authored the Commonwealth Fund study. “The way they cope is the same way health systems usually cope as they go through mass layoffs, site closures, and service reductions.”

Amanda Pears Kelly, CEO of Advocates for Community Health, a trade group representing 52 health centers, said health centers are also worried about rising costs, especially for prescription drugs. The impending financial challenges will make it more difficult to hire staff both in rural areas where doctors and nurses are scarce and in more populated areas, where competition for workers is more acute, she told Â鶹ŮÓÅ Health News.

“The challenge is health centers are being hit from every direction,” Pears Kelly said.

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

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

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

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

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

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

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

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

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

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

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

A Lifeline of Care

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

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

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

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

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

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

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

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

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

A New Lease on Life?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Not all Montana health leaders are worried.

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

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

“I always would say, ‘Oh, they’re nice to have,’ but now I look at the hospital and say, ‘That’s essential to our community,’” he said.

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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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