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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“I work very hard,” Meyer said.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sowing Choices

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

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

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

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

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

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

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

Staying Rooted in Coverage

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

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

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

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

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

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

Meanwhile, policy experts share Howard’s concerns.

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

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

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

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

Are you struggling to afford your health insurance? Have you decided to forgo coverage? to contact ºÚÁϳԹÏÍø News and share your story.

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

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

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

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

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

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

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

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

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

Long Wait Times for Help

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

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

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

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

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

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

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

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

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

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

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

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

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

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

States Short-Staffed for Medicaid

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

ºÚÁϳԹÏÍø News correspondents Katheryn Houghton and Samantha Liss contributed to this report.

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

“Women need this help,” Pipe said.

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

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

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

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

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

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

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

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

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

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

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

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

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

Laboring Alone

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

‘Moccasins on the Ground’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Do you have an experience with prior authorization you’d like to share? to tell ºÚÁϳԹÏÍø News your story.

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

At least one of those complications .

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

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

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

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

ºÚÁϳԹÏÍø 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 ºÚÁϳԹÏÍø 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 ºÚÁϳԹÏÍø 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.”

Share your story with us: Do you have experience with infant formula or any insights about it that you’d like to share? We’d like to hear from you. Click here to contact our reporting team.

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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 ºÚÁϳԹÏÍø 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 ºÚÁϳԹÏÍø News.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

‘We Just Hold Our Breath’

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

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

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

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

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

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

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

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

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

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

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

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

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

‘It Keeps Me Awake at Night’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

ºÚÁϳԹÏÍø News’ Hayat Norimine contributed to this report.

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It was a contrast to how Cole, 18, spent part of the 2024 holiday season. She was in the hospital — a frequent occurrence with sickle cell disease, a genetic condition that damages oxygen-carrying red blood cells and for years caused debilitating pain in her arms and legs. Flare-ups often would force her to cancel plans or miss school.

“With sickle cell it hurts every day,” she said. “It might be more tolerable some days, but it’s a constant thing.”

In May, Cole completed a several-months-long that helps reprogram the body’s stem cells to produce healthy red blood cells.

She was one of the first Medicaid enrollees nationally to benefit from a in which the federal government negotiates the cost of a cell or gene therapy with pharmaceutical companies on behalf of state Medicaid programs — and then holds them accountable for the treatment’s success.

Under the agreement, participating states will receive “discounts and rebates” from the drugmakers if the treatments don’t work as promised, according to the Centers for Medicare & Medicaid Services.

That’s a stark difference from how Medicaid and other health plans typically pay for drugs and therapies — the bill usually gets paid regardless of the treatments’ benefits for patients. But CMS has not disclosed the full terms of the contract, including how much the drug companies will repay if the therapy doesn’t work.

The treatment Cole received offers a potential cure for many of the 100,000 primarily Black Americans with sickle cell disease, which is estimated to shorten lifespans by more than two decades. But the treatment’s cost presents a steep financial challenge for Medicaid, the joint state-federal government insurer for people with low incomes or disabilities. Medicaid covers roughly half of Americans with the condition.

There are two gene therapies approved by the Food and Drug Administration on the market, one costing $2.2 million per patient and the other $3.1 million, with neither cost including the expense of the long hospital stay.

The CMS program is one of the rare health initiatives started under President Joe Biden and continued during the Trump administration. The Biden administration with the two manufacturers, Vertex Pharmaceuticals and Bluebird Bio, in December 2024, opening the door for states to join voluntarily.

“This model is a game changer,” Mehmet Oz, the CMS administrator, said announcing that 33 states, Washington, D.C., and Puerto Rico had signed onto the initiative.

Asked for further details on the contracts, Catherine Howden, a CMS spokesperson, said in a statement that the terms of the agreements are “confidential and have only been disclosed to state Medicaid agencies.”

“Tackling the high cost of drugs in the United States is a priority of the current administration,” the statement said.

Citing confidentiality, two state Medicaid directors and the two manufacturers declined to reveal the financial terms of agreements.

New Therapies

The gene therapies, approved for people 12 or older with sickle cell disease, offer a chance to live without pain and complications, which can include strokes and organ damage, and avoid hospitalizations, emergency room visits, and other costly care. The Biden administration estimated that sickle cell care already costs the health system almost $3 billion a year.

With many more expensive gene therapies on the horizon, the cost of the sickle cell therapies presages financial challenges for Medicaid. Hundreds of cell and gene therapies are in clinical trials, and dozens could get federal approval in the next few years.

If the sickle cell payment model works, it will probably lead to similar arrangements for other pricey therapies, particularly for those that treat rare diseases, said Sarah Emond, president and CEO of the Institute for Clinical and Economic Review, an independent research institute that evaluates new medical treatments. “This is a worthy experiment,” she said.

Setting up payment for drugs based on outcomes makes sense when dealing with high treatment costs and uncertainty about their long-term benefits, Emond said.

“The juice has to be worth the squeeze,” she said.

Clinical trials for the gene therapies included fewer than 100 patients and followed them for only two years, leaving some state Medicaid officials eager for reassurance they were getting a good deal.

“What we care about is whether services actually improve health,” said Djinge Lindsay, chief medical officer for the Maryland Department of Health, which runs the state’s Medicaid program. Maryland is expected to begin accepting patients for the new sickle cell program this month.

Medicaid is already required to cover almost all FDA-approved drugs and therapies, but states have leeway to limit access by restricting which patients are eligible, setting up a lengthy prior authorization process, or requiring enrollees to first undergo other treatments.

While the gene therapy treatments are limited to certain hospitals around the country, state Medicaid officials say the federal model means more enrollees will have access to the therapies without other restrictions.

The manufacturers also pay for fertility preservation such as freezing reproductive cells, which could be damaged by chemotherapy during the treatment. Typically, Medicaid doesn’t cover that cost, said Margaret Scott, a principal with the consulting firm Avalere Health.

Emond said pharmaceutical companies were interested in the federal deal because it could lead to quicker acceptance of the therapy by Medicaid, compared with signing individual contracts with each state.

States are attracted to the federal program because it offers help monitoring patients in addition to negotiating the cost, she said. Despite some secrecy around the new model, Emond said she expects a federally funded evaluation will track the number of patients in the program and their results, allowing states to seek rebates if the treatment is not working.

The program could run for as long as 11 years, according to CMS.

“This therapy can benefit many sickle cell patients,” said Edward Donnell Ivy, chief medical officer for the Sickle Cell Disease Association of America.

He said the federal model will help more patients access the treatment, though he noted utilization will depend in part on the limited number of hospitals that offer the multimonth therapy.

Hope for Sickle Cell Patients

Before gene therapy, the only potential cure for sickle cell patients was a bone marrow transplant — an option available only to those who could find a suitable donor, about 25% of patients, Ivy said. For others, lifelong management includes medications to reduce the disease’s effects and manage pain, as well as blood transfusions.

About 30 of Missouri’s 1,000 Medicaid enrollees with sickle cell disease will get the therapy in the first three years, said Josh Moore, director of the state’s Medicaid program. So far, fewer than 10 enrollees have received it since the state began offering it in 2025, he said.

Less than a year into the federal program, Moore said it’s too early to tell its rate of success — defined as an absence of painful episodes that lead to a hospital visit. But he hopes it will be close to the 90% rate seen over the course of a couple of years in clinical trials.

Moore said the federal program based on how well the treatment works was preferred over cutting fees for a new and promising therapy, which would put the manufacturers’ ability to develop new drugs at risk. “We want to be good stewards of taxpayer dollars,” he said.

He declined to comment on how much the state may save from the arrangement or disclose other details, such as how much the drug companies might have to pay back, citing confidentiality of the contracts.

Lately Cole, who underwent gene therapy at St. Louis Children’s Hospital, has been able to focus on her hobbies — playing video games, drawing, and painting – and earning her high school diploma.

She said she was glad to get the treatment. The worst part was the chemotherapy, she said, which left her unable to talk or eat — and entailed getting stuck with needles.

She said that her condition is “way better” and that she has had no pain episodes leading to a hospital stay since completing the therapy last spring. “I’m just grateful I was able to get it.”

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Now, though, it seems unlikely to become state law. In November, a vote to advance beyond a legislative subcommittee failed. Four out of six Republicans on the Senate Medical Affairs Committee subpanel refused to vote on the measure.

Republican state Sen. Jeff Zell said during a November subcommittee hearing that he wanted to help “move this pro-life football down the field and to save as many babies as we can.” Still, he could not support the bill as written.

“What I am interested in is speaking on behalf of the South Carolinian,” he said, “and they’re not interested in this bill right now or this issue right now.”

While that bill stalled, it signals that abortion will continue to loom large during 2026 legislative sessions. More than three years after the Supreme Court overturned Roe v. Wade, measures related to abortion have already been prefiled in several states, including Alabama, Arizona, Florida, Missouri, and Virginia.

Meanwhile, the South Carolina bill also exposed a rift among Republicans. Some GOP lawmakers are eager to appeal to their most conservative supporters by pursuing more restrictive abortion laws, despite the lack of support for such measures among most voters.

Until recently, the idea of charging women who obtain abortions with a crime was considered “politically toxic,” said Steven Greene, a political science professor at North Carolina State University.

Yet introduced “abortion as homicide” bills during 2024-2025 legislative sessions, many of which included the death penalty as a potential sentence, according to Dana Sussman, senior vice president of Pregnancy Justice, an organization that tracks the criminalization of pregnancy outcomes.

Even though none of those bills was signed into law, Sussman called this “a hugely alarming trend.”

“My fear is that one of these will end up passing,” she said.

Less than a month after the bill stalled in South Carolina, — which would create criminal penalties for “coercion to obtain an abortion” — was prefiled ahead of the Jan. 13 start of the state’s legislative session.

“The issue is not going away. It’s a moral issue,” said state Sen. Richard Cash, who introduced the abortion bill that stalled in the subcommittee. “How far we can go, and what successes we can have, remain to be seen.”

‘Wrongful Death’

Florida law already bans abortion after six weeks of pregnancy. But a Republican lawmaker introduced for the “wrongful death” of a fetus. If enacted, the measure will allow parents to sue for the death of an unborn child, making them eligible for compensation, including damages for mental pain and suffering.

The bill says neither the mother nor a medical provider giving “lawful” care could be sued. But anyone else deemed to have acted with “negligence,” including someone who helps procure abortion-inducing pills or a doctor who performs an abortion after six weeks, could be sued by one of the parents.

In Missouri, a constitutional amendment to legalize abortion passed in 2024 with 51.6% of the vote. In 2026, state lawmakers are asking voters to repeal the amendment they just passed. A new proposed amendment would effectively reinstate the state’s ban on most abortions, with new exceptions for cases of rape, incest, and medical emergencies.

“I think that’s a middle-of-the-road, common sense proposal that most Missourians will agree with,” said , a Republican state representative who to put the measure on the ballot.

Lewis said the 2024 amendment went too far in allowing a legal basis to challenge all of Missouri’s abortion restrictions, sometimes called “targeted regulation of abortion providers,” or TRAP, laws. Even before Missouri’s outright ban, the number of abortions recorded in the state had dropped from to .

Meanwhile, Lewis backed another proposed constitutional amendment that will appear on the 2026 ballot. That measure would make it harder for Missourians to amend the state constitution, by requiring any amendment to receive a majority of votes in each congressional district.

One analysis suggested as few as any ballot measure under the proposal. Lewis dismissed the analysis as a “Democratic talking point.”

‘Gerrymandered’ Districts

Republican lawmakers aren’t necessarily aiming to pass abortion laws that appeal to the broadest swath of voters in their states.

Polling conducted ahead of Missouri’s vote in 2024 showed 52% of the state’s likely voters supported the constitutional amendment to protect access to abortion, a narrow majority that was consistent with the final vote.

In Texas, state law offers no exceptions for abortion in cases of rape or incest, even though a 2025 survey found 83% of Texans believe the procedure should be legal under those conditions.

In South Carolina, a 2024 poll found only 31% of respondents supported the state’s existing six-week abortion ban, which prohibits the procedure in most cases after fetal cardiac activity can be detected.

But Republicans hold supermajorities in the South Carolina General Assembly, and some continue to push for a near-total abortion ban even though such a law would probably be broadly unpopular. That’s because district lines have been drawn in such a way that politicians are more likely to be ousted by a more conservative member of their own party in a primary than defeated by a Democrat in a general election, said Scott Huffmon, director of the Center for Public Opinion & Policy Research at Winthrop University.

The South Carolina legislature is “so gerrymandered that more than half of the seats in both chambers were uncontested in the last general election. Whoever wins the primary wins the seat,” Huffmon said. “The best way to win the primary — or, better yet, prevent a primary challenge at all — is to run to the far right and embrace the policies of the most conservative people in the district.”

That’s what some proposals, including the “abortion as homicide” bills, reflect, said Greene, the North Carolina State professor. Lawmakers could vote for such a measure and suffer “very minimal, if any,” political backlash, he said.

“Most of the politicians passing these laws are more concerned with making the base happy than with actually dramatically reducing the number of abortions that take place within their jurisdiction,” Greene said.

Yet the number of abortions performed in South Carolina has dropped dramatically — by 63% from 2023 to 2024, when the state enacted the existing ban, according to data published by the state’s Department of Public Health.

Kimya Forouzan, a policy adviser with the Guttmacher Institute, which tracks abortion legislation throughout the country and advocates for reproductive rights, said South Carolina’s attempt to pass “the most extreme bill that we have seen” is “part of a pattern.”

“I think the push for anti-abortion legislation exists throughout the country,” she said. “There are a lot of battles that are brewing.”

ºÚÁϳԹÏÍø News correspondent Daniel Chang and Southern bureau chief Sabriya Rice contributed to this report.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“I work very hard,” Meyer said.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sowing Choices

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

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

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

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

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

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

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

Staying Rooted in Coverage

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

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

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

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

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

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

Meanwhile, policy experts share Howard’s concerns.

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

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

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

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

Are you struggling to afford your health insurance? Have you decided to forgo coverage? to contact ºÚÁϳԹÏÍø News and share your story.

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

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

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

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

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

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

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

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

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

Long Wait Times for Help

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

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

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

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

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

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

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

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

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

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

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

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

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

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

States Short-Staffed for Medicaid

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

ºÚÁϳԹÏÍø News correspondents Katheryn Houghton and Samantha Liss contributed to this report.

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

“Women need this help,” Pipe said.

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

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

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

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

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

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

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

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

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

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

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

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

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

Laboring Alone

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

‘Moccasins on the Ground’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Do you have an experience with prior authorization you’d like to share? to tell ºÚÁϳԹÏÍø News your story.

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

At least one of those complications .

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

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

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

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

ºÚÁϳԹÏÍø 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 ºÚÁϳԹÏÍø 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 ºÚÁϳԹÏÍø 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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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 ºÚÁϳԹÏÍø 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 ºÚÁϳԹÏÍø News.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

‘We Just Hold Our Breath’

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

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

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

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

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

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

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

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

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

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

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

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

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

‘It Keeps Me Awake at Night’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

ºÚÁϳԹÏÍø News’ Hayat Norimine contributed to this report.

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It was a contrast to how Cole, 18, spent part of the 2024 holiday season. She was in the hospital — a frequent occurrence with sickle cell disease, a genetic condition that damages oxygen-carrying red blood cells and for years caused debilitating pain in her arms and legs. Flare-ups often would force her to cancel plans or miss school.

“With sickle cell it hurts every day,” she said. “It might be more tolerable some days, but it’s a constant thing.”

In May, Cole completed a several-months-long that helps reprogram the body’s stem cells to produce healthy red blood cells.

She was one of the first Medicaid enrollees nationally to benefit from a in which the federal government negotiates the cost of a cell or gene therapy with pharmaceutical companies on behalf of state Medicaid programs — and then holds them accountable for the treatment’s success.

Under the agreement, participating states will receive “discounts and rebates” from the drugmakers if the treatments don’t work as promised, according to the Centers for Medicare & Medicaid Services.

That’s a stark difference from how Medicaid and other health plans typically pay for drugs and therapies — the bill usually gets paid regardless of the treatments’ benefits for patients. But CMS has not disclosed the full terms of the contract, including how much the drug companies will repay if the therapy doesn’t work.

The treatment Cole received offers a potential cure for many of the 100,000 primarily Black Americans with sickle cell disease, which is estimated to shorten lifespans by more than two decades. But the treatment’s cost presents a steep financial challenge for Medicaid, the joint state-federal government insurer for people with low incomes or disabilities. Medicaid covers roughly half of Americans with the condition.

There are two gene therapies approved by the Food and Drug Administration on the market, one costing $2.2 million per patient and the other $3.1 million, with neither cost including the expense of the long hospital stay.

The CMS program is one of the rare health initiatives started under President Joe Biden and continued during the Trump administration. The Biden administration with the two manufacturers, Vertex Pharmaceuticals and Bluebird Bio, in December 2024, opening the door for states to join voluntarily.

“This model is a game changer,” Mehmet Oz, the CMS administrator, said announcing that 33 states, Washington, D.C., and Puerto Rico had signed onto the initiative.

Asked for further details on the contracts, Catherine Howden, a CMS spokesperson, said in a statement that the terms of the agreements are “confidential and have only been disclosed to state Medicaid agencies.”

“Tackling the high cost of drugs in the United States is a priority of the current administration,” the statement said.

Citing confidentiality, two state Medicaid directors and the two manufacturers declined to reveal the financial terms of agreements.

New Therapies

The gene therapies, approved for people 12 or older with sickle cell disease, offer a chance to live without pain and complications, which can include strokes and organ damage, and avoid hospitalizations, emergency room visits, and other costly care. The Biden administration estimated that sickle cell care already costs the health system almost $3 billion a year.

With many more expensive gene therapies on the horizon, the cost of the sickle cell therapies presages financial challenges for Medicaid. Hundreds of cell and gene therapies are in clinical trials, and dozens could get federal approval in the next few years.

If the sickle cell payment model works, it will probably lead to similar arrangements for other pricey therapies, particularly for those that treat rare diseases, said Sarah Emond, president and CEO of the Institute for Clinical and Economic Review, an independent research institute that evaluates new medical treatments. “This is a worthy experiment,” she said.

Setting up payment for drugs based on outcomes makes sense when dealing with high treatment costs and uncertainty about their long-term benefits, Emond said.

“The juice has to be worth the squeeze,” she said.

Clinical trials for the gene therapies included fewer than 100 patients and followed them for only two years, leaving some state Medicaid officials eager for reassurance they were getting a good deal.

“What we care about is whether services actually improve health,” said Djinge Lindsay, chief medical officer for the Maryland Department of Health, which runs the state’s Medicaid program. Maryland is expected to begin accepting patients for the new sickle cell program this month.

Medicaid is already required to cover almost all FDA-approved drugs and therapies, but states have leeway to limit access by restricting which patients are eligible, setting up a lengthy prior authorization process, or requiring enrollees to first undergo other treatments.

While the gene therapy treatments are limited to certain hospitals around the country, state Medicaid officials say the federal model means more enrollees will have access to the therapies without other restrictions.

The manufacturers also pay for fertility preservation such as freezing reproductive cells, which could be damaged by chemotherapy during the treatment. Typically, Medicaid doesn’t cover that cost, said Margaret Scott, a principal with the consulting firm Avalere Health.

Emond said pharmaceutical companies were interested in the federal deal because it could lead to quicker acceptance of the therapy by Medicaid, compared with signing individual contracts with each state.

States are attracted to the federal program because it offers help monitoring patients in addition to negotiating the cost, she said. Despite some secrecy around the new model, Emond said she expects a federally funded evaluation will track the number of patients in the program and their results, allowing states to seek rebates if the treatment is not working.

The program could run for as long as 11 years, according to CMS.

“This therapy can benefit many sickle cell patients,” said Edward Donnell Ivy, chief medical officer for the Sickle Cell Disease Association of America.

He said the federal model will help more patients access the treatment, though he noted utilization will depend in part on the limited number of hospitals that offer the multimonth therapy.

Hope for Sickle Cell Patients

Before gene therapy, the only potential cure for sickle cell patients was a bone marrow transplant — an option available only to those who could find a suitable donor, about 25% of patients, Ivy said. For others, lifelong management includes medications to reduce the disease’s effects and manage pain, as well as blood transfusions.

About 30 of Missouri’s 1,000 Medicaid enrollees with sickle cell disease will get the therapy in the first three years, said Josh Moore, director of the state’s Medicaid program. So far, fewer than 10 enrollees have received it since the state began offering it in 2025, he said.

Less than a year into the federal program, Moore said it’s too early to tell its rate of success — defined as an absence of painful episodes that lead to a hospital visit. But he hopes it will be close to the 90% rate seen over the course of a couple of years in clinical trials.

Moore said the federal program based on how well the treatment works was preferred over cutting fees for a new and promising therapy, which would put the manufacturers’ ability to develop new drugs at risk. “We want to be good stewards of taxpayer dollars,” he said.

He declined to comment on how much the state may save from the arrangement or disclose other details, such as how much the drug companies might have to pay back, citing confidentiality of the contracts.

Lately Cole, who underwent gene therapy at St. Louis Children’s Hospital, has been able to focus on her hobbies — playing video games, drawing, and painting – and earning her high school diploma.

She said she was glad to get the treatment. The worst part was the chemotherapy, she said, which left her unable to talk or eat — and entailed getting stuck with needles.

She said that her condition is “way better” and that she has had no pain episodes leading to a hospital stay since completing the therapy last spring. “I’m just grateful I was able to get it.”

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Now, though, it seems unlikely to become state law. In November, a vote to advance beyond a legislative subcommittee failed. Four out of six Republicans on the Senate Medical Affairs Committee subpanel refused to vote on the measure.

Republican state Sen. Jeff Zell said during a November subcommittee hearing that he wanted to help “move this pro-life football down the field and to save as many babies as we can.” Still, he could not support the bill as written.

“What I am interested in is speaking on behalf of the South Carolinian,” he said, “and they’re not interested in this bill right now or this issue right now.”

While that bill stalled, it signals that abortion will continue to loom large during 2026 legislative sessions. More than three years after the Supreme Court overturned Roe v. Wade, measures related to abortion have already been prefiled in several states, including Alabama, Arizona, Florida, Missouri, and Virginia.

Meanwhile, the South Carolina bill also exposed a rift among Republicans. Some GOP lawmakers are eager to appeal to their most conservative supporters by pursuing more restrictive abortion laws, despite the lack of support for such measures among most voters.

Until recently, the idea of charging women who obtain abortions with a crime was considered “politically toxic,” said Steven Greene, a political science professor at North Carolina State University.

Yet introduced “abortion as homicide” bills during 2024-2025 legislative sessions, many of which included the death penalty as a potential sentence, according to Dana Sussman, senior vice president of Pregnancy Justice, an organization that tracks the criminalization of pregnancy outcomes.

Even though none of those bills was signed into law, Sussman called this “a hugely alarming trend.”

“My fear is that one of these will end up passing,” she said.

Less than a month after the bill stalled in South Carolina, — which would create criminal penalties for “coercion to obtain an abortion” — was prefiled ahead of the Jan. 13 start of the state’s legislative session.

“The issue is not going away. It’s a moral issue,” said state Sen. Richard Cash, who introduced the abortion bill that stalled in the subcommittee. “How far we can go, and what successes we can have, remain to be seen.”

‘Wrongful Death’

Florida law already bans abortion after six weeks of pregnancy. But a Republican lawmaker introduced for the “wrongful death” of a fetus. If enacted, the measure will allow parents to sue for the death of an unborn child, making them eligible for compensation, including damages for mental pain and suffering.

The bill says neither the mother nor a medical provider giving “lawful” care could be sued. But anyone else deemed to have acted with “negligence,” including someone who helps procure abortion-inducing pills or a doctor who performs an abortion after six weeks, could be sued by one of the parents.

In Missouri, a constitutional amendment to legalize abortion passed in 2024 with 51.6% of the vote. In 2026, state lawmakers are asking voters to repeal the amendment they just passed. A new proposed amendment would effectively reinstate the state’s ban on most abortions, with new exceptions for cases of rape, incest, and medical emergencies.

“I think that’s a middle-of-the-road, common sense proposal that most Missourians will agree with,” said , a Republican state representative who to put the measure on the ballot.

Lewis said the 2024 amendment went too far in allowing a legal basis to challenge all of Missouri’s abortion restrictions, sometimes called “targeted regulation of abortion providers,” or TRAP, laws. Even before Missouri’s outright ban, the number of abortions recorded in the state had dropped from to .

Meanwhile, Lewis backed another proposed constitutional amendment that will appear on the 2026 ballot. That measure would make it harder for Missourians to amend the state constitution, by requiring any amendment to receive a majority of votes in each congressional district.

One analysis suggested as few as any ballot measure under the proposal. Lewis dismissed the analysis as a “Democratic talking point.”

‘Gerrymandered’ Districts

Republican lawmakers aren’t necessarily aiming to pass abortion laws that appeal to the broadest swath of voters in their states.

Polling conducted ahead of Missouri’s vote in 2024 showed 52% of the state’s likely voters supported the constitutional amendment to protect access to abortion, a narrow majority that was consistent with the final vote.

In Texas, state law offers no exceptions for abortion in cases of rape or incest, even though a 2025 survey found 83% of Texans believe the procedure should be legal under those conditions.

In South Carolina, a 2024 poll found only 31% of respondents supported the state’s existing six-week abortion ban, which prohibits the procedure in most cases after fetal cardiac activity can be detected.

But Republicans hold supermajorities in the South Carolina General Assembly, and some continue to push for a near-total abortion ban even though such a law would probably be broadly unpopular. That’s because district lines have been drawn in such a way that politicians are more likely to be ousted by a more conservative member of their own party in a primary than defeated by a Democrat in a general election, said Scott Huffmon, director of the Center for Public Opinion & Policy Research at Winthrop University.

The South Carolina legislature is “so gerrymandered that more than half of the seats in both chambers were uncontested in the last general election. Whoever wins the primary wins the seat,” Huffmon said. “The best way to win the primary — or, better yet, prevent a primary challenge at all — is to run to the far right and embrace the policies of the most conservative people in the district.”

That’s what some proposals, including the “abortion as homicide” bills, reflect, said Greene, the North Carolina State professor. Lawmakers could vote for such a measure and suffer “very minimal, if any,” political backlash, he said.

“Most of the politicians passing these laws are more concerned with making the base happy than with actually dramatically reducing the number of abortions that take place within their jurisdiction,” Greene said.

Yet the number of abortions performed in South Carolina has dropped dramatically — by 63% from 2023 to 2024, when the state enacted the existing ban, according to data published by the state’s Department of Public Health.

Kimya Forouzan, a policy adviser with the Guttmacher Institute, which tracks abortion legislation throughout the country and advocates for reproductive rights, said South Carolina’s attempt to pass “the most extreme bill that we have seen” is “part of a pattern.”

“I think the push for anti-abortion legislation exists throughout the country,” she said. “There are a lot of battles that are brewing.”

ºÚÁϳԹÏÍø News correspondent Daniel Chang and Southern bureau chief Sabriya Rice contributed to this report.

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