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

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

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

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

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

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

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

KFF is a health information nonprofit that includes Ñî¹óåú´«Ã½Ò•îl Health News.

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

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

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

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

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

Mehmet Oz, administrator for the federal Centers for Medicare & Medicaid Services, told Ñî¹óåú´«Ã½Ò•îl Health News in an interview this week that “we don’t like self-attesting” and that “documentation is critical.”

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

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

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

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

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

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

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

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“They’re the folks that work at restaurants. They’re the teacher’s aides,” said Starr, a registered nurse who became Open Door’s chief executive more than six years ago. Those patients, he said, are “really the heart and soul of rural America.”

He said if his remote health centers don’t get a share of the billions of dollars Congress earmarked to transform health care in rural America, patients may soon lose services. About 50% of Open Door’s 60,000 patients are on Medicaid, the joint state and federal insurance program that, together with the related Children’s Health Insurance Program, covers with low incomes or disabilities.

When Congress approved the One Big Beautiful Bill Act last summer, it cut nearly $1 trillion from Medicaid over the next decade. Now, Starr hopes the $50 billion Rural Health Transformation Program, which was part of the same bill, will help keep his patients covered.

Yet, small community health care providers, such as Open Door, may find they are sharing the billions with an army of corporate giants before it reaches their patients.

Months after federal leaders announced that all 50 states won first-year awards, ranging from $147 million for New Jersey to $281 million for Texas, state plans reveal that a heavy dose of prescribed spending will go to companies that can increase the use of electronic health records, strengthen cybersecurity, and improve state and health system technology platforms.

And at least four large-scale coalitions of companies are now pitching multipronged services to the states. Many of the companies already work with regional health systems and states through Medicaid contracting or mobile and telehealth operations.

How those services will help improve the health care of rural Americans at places such as Open Door remains an open question.

States Stare Down Reporting Deadlines

Federal regulators were “really interested in seeing digital health investments” when they crafted the five-year rural health program rules last year, said Maya Sandalow, an associate director at the Bipartisan Policy Center, a think tank based in Washington, D.C. She co-authored a recent report on how the 50 states plan to invest in technology, including modernizing health care infrastructure and expanding virtual care options such as telehealth and remote patient monitoring.

“The rural health fund isn’t really designed to directly replace or offset the lost Medicaid funding,” Sandalow said, noting that the federal staffers in charge of the program — money that could help rural hospitals and clinics pay for patient care — at 15% of the total funding awarded to a state.

Federal regulators also established tight reporting deadlines, forcing states to move quickly.

States must file progress reports and obligate all first-year funding , according to the Centers for Medicare & Medicaid Services, the federal agency overseeing the program. States could see their awards decreased or terminated at any time if they fail to follow federal requirements, according to the .

As of early April, CMS had not approved or had only partially approved some state budgets, including those of Wyoming, Colorado, and Vermont, according to state officials. CMS spokesperson Catherine Howden, who declined to say which states still needed revised budgets approved, said the agency does not provide “state-by-state updates.”

In Alaska, the budget is approved but the state has not announced when it will release full grant proposals and awards, said Tricia Franklin, program coordinator for Alaska’s rural health transformation.

“Early summer was the target,” Franklin said. But the response from vendors and applicants has been “much greater than expected, so it may take us a little longer.”

Working with consulting companies is an established way for states to “quickly and effectively” meet federal deadlines and roll out grant money, said , national director for population health at the Milbank Memorial Fund, a nonprofit focused on state health policy work.

Upgrading Technology, Modernizing Rural Health

Science Applications International Corp., a Fortune 500 government contractor, pulled together the . SAIC does a variety of technology work such as cybersecurity and engineering support. The alliance also includes Walgreens and Mission Mobile Medical, which turns RVs into primary care clinics. A data analytics company, a telemedicine and software company, and a company that helps place medical graduates in health systems are also part of the coalition.

The SAIC alliance offers “an ecosystem” of companies that can coordinate the work states have promised, said , SAIC’s Rural Health Transformation Program lead and a former chief information officer for the Virginia Department of Health. Each of the companies has representatives focused on the rural program, he said.

A lack of digital infrastructure — such as electronic health records at different clinics and hospitals that can talk to one another — has been a consistent barrier for rural medical care teams, said the Bipartisan Policy Center’s Sandalow.

“The funding hasn’t always been there in order for rural areas to create the infrastructure that’s needed to fully adopt remote patient monitoring, telehealth, artificial intelligence in ways that will really be supportive,” Sandalow said. “It takes things like updating infrastructure, changing workflows.”

Sandalow’s found that Maine and Utah are investing in cybersecurity; Indiana, Missouri, and New Mexico plan to modernize their electronic health records; Oklahoma plans to buy hardware and software, subsidize subscriptions, and give technical support to rural providers; and states such as Arizona and South Carolina will use funds to create telehealth hubs or buy remote patient monitoring equipment.

Federal regulators, when creating the rural program’s spending rules, also said no more than 5% of a state’s total funding awarded could be used to replace electronic medical records systems that already meet federal standards. Sandalow said that means states will focus on enhancements and upgrades to their current systems.

Gainwell Technologies, which operates the systems for dozens of state Medicaid programs, is spearheading . Rushil Desai, a Gainwell senior vice president, said states’ detailed spending plans are “changing in real time.”

Maine’s Medicaid plan contracts with Gainwell, and the state’s initial application listed four contracts worth more than $16 million over five years for the company. The state confirmed it has received federal approval for only its first year of spending, which includes a to implement changes to the state’s Medicaid claims system.

James Lomastro, a senior-care advocate in rural Massachusetts with the nonprofit , said he worries that large vendors and health systems will get the state’s transformation dollars.

Clinics, home care agencies, and nursing homes that “actually provide day-to-day support in the community are mostly on the margins” of state discussions about how to spend the money, he said. A spokesperson for Massachusetts’ Executive Office of Health and Human Services, Olivia James, said state officials would “ensure that everyone has a seat at the table” with training, financial incentives, and direct investments.

Arizona’s rural fund budget, which is $167 million for the first year, allocates for medical diagnostic equipment and technology upgrades, including to electronic health records, specifically for rural health care facilities.

But it also for county public health departments, said Pima County Public Health Director Theresa Cullen. The approved budget includes up to $4 million for grants to support community health workers.

“In these rural communities, you need to be present,” Cullen said.

Alina Czekai, director of the CMS rural health transformation office, said her team plans to visit all 50 states. She spoke at the National Rural Health Association’s policy conference in Washington, D.C., in February and told the audience that her team wants “the money to go to rural communities, rural providers, rural patients.” The association’s members include rural hospitals and clinics, which are expected to suffer big losses under the Medicaid cuts.

In California, Open Door’s Starr said he provided input on his state’s initial application, which won $234 million in first-year funding, but he is not clear on what the next steps will be for getting money from the program.

For his patients, Starr said, money is needed for technology upgrades. After all, he said, updated electronic health systems could operate seamlessly and store the documentation needed to keep a patient enrolled in Medicaid.

Updated technology could be exactly what Open Door and other area clinics need to “help keep people covered,” Starr said.

Ñî¹óåú´«Ã½Ò•îl Health News senior correspondent Phil Galewitz and rural health care correspondent Arielle Zionts 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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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 Ñî¹óåú´«Ã½Ò•îl Health News investigation found.

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

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

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

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

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

The study continued for almost a year.

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

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

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

According to a federal website, chaired the study.

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

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

A spokesperson for Mead Johnson, Jennifer O’Neill, did not comment on Abbott’s clinical trial but said in a November statement to Ñî¹óåú´«Ã½Ò•îl Health News that existing studies “cannot responsibly support” any connection between the acidified fortifier and conditions such as necrotizing enterocolitis or metabolic acidosis.

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

In 2024, Mead Johnson discontinued the product.

Winning the ‘Hospital War’

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

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

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

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

In internal documents and other material from litigation reviewed by Ñî¹óåú´«Ã½Ò•îl Health News, formula makers described hospitals as gateways to the much larger retail market because parents are likely to stick with the brand their babies started on. Products used in the NICU help win hospital contracts, and hospital contracts help establish brand loyalty, according to court records.

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

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

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

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

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

Industry documents cited in litigation provide a different perspective.

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

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

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

Mead Johnson has espoused a similar strategy.

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

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

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

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

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

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

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

Why focus on hospitals? “,” it explained.

The document was displayed in the Whitfield case.

In the market for preterm nutrition, Abbott and Mead Johnson compete with each other, not against the use of human milk, the companies told Ñî¹óåú´«Ã½Ò•îl Health News.

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

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

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

On the Defensive

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

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

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

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

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

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

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

The formula makers have repeatedly denied fault.

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

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

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

Neonatologists use the products routinely, O’Neill said.

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

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

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

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

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

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

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

‘At the Table’

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

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

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

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

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

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

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

But Abbott had some changes, the email thread shows.

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

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

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

Hackam did not respond to questions Ñî¹óåú´«Ã½Ò•îl Health News sent by email.

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

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

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

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

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

‘In the Wrong Direction’

Transparency can be subjective.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

‘It Should Not Be in a NICU’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Through a request under a Kentucky open-records law, Ñî¹óåú´«Ã½Ò•îl Health News obtained an informed consent form for the AL16 study used at a public institution, the University of Louisville. The form mentioned risks such as diarrhea, constipation, gas, and fussiness. It did not mention metabolic acidosis or NEC.

Ñî¹óåú´«Ã½Ò•îl Health News also reviewed an informed consent form for the AL16 study used at Memorial Hospital of South Bend. It was largely identical to the one used in Louisville and did not mention metabolic acidosis or NEC.

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

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

Anderson-Berry told Ñî¹óåú´«Ã½Ò•îl Health News that Abbott was “ethically well positioned” to conduct the AL16 clinical trial because her paper was not definitive.

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

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

But White, who went on to be listed as a co-author of the study, told Ñî¹óåú´«Ã½Ò•îl Health News that parents should have been informed that the risks included metabolic acidosis and NEC.

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

Abbott did not directly answer questions about the consent forms.

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

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

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

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

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

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

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

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

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

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

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That’s not stopping Florida lawmakers from trying to adopt Medicaid work requirements anyway. It’s the only legislative body in a nonexpansion state to even consider it so far.

“You need to go to work if you want your friends and neighbors to pay for your health care,” said , the Republican sponsor of a Medicaid work requirement proposal making its way through the legislature.

The move baffles health care advocates and Medicaid experts. Some doubt it’s even legal under President Donald Trump’s signature domestic policy law.

“You cannot change the terms of the work requirement,” said , an attorney and a professor at Georgetown University’s McCourt School of Public Policy, issued by the Centers for Medicare & Medicaid Services. For Cuello, the answer is clear: “It’s a pretty easy no.”

Medicaid work requirements affect Washington, D.C., and the 40 states that have expanded Medicaid eligibility to all nondisabled adults ages 19 through 64 with incomes up to 138% of the federal poverty level, as prescribed under the Affordable Care Act. That’s an income of $22,025 a year for a single person.

Starting next January, those states must require people in their expansion groups to report at least 80 hours a month of work, education, or community service to qualify for and maintain Medicaid coverage.

About 4 million people are enrolled in Florida’s program, and Gaetz estimates that about 147,000 of them are adults who “could work and should work.”

They “are able-bodied and they don’t have small children at home, and they aren’t taking care of an elderly person or a disabled person,” he said. “Yet they receive Medicaid benefits.”

People affected by would primarily be parents of children 14 and older, and some 19- and 20-year-olds, he said. A in the Florida House would apply Medicaid work requirements to parents of children ages 6 and older.

To qualify for Medicaid in Florida, a working-age adult without a disability must generally be caring for a child or an older or disabled family member and cannot earn more than 26% of the federal poverty level, or about $592 a month for a family of three.

Most adults who are not disabled and receive Medicaid already work, and many people in low-paying jobs do not receive health insurance through an employer, , a health information nonprofit that includes Ñî¹óåú´«Ã½Ò•îl Health News. Among single adults ages 19 to 64 in Florida who made under $15,000 a year in 2024, through work.

Critics say Florida’s proposal would likely force some people to become uninsured, even if they meet the work requirement. That’s because the state’s Medicaid income limit is so low that working the mandated 80 hours a month would likely cause those individuals to exceed the income eligibility limit but also leave them earning too little to qualify for subsidized coverage on the Affordable Care Act marketplace.

Michelle Mastrototaro said she lost her Medicaid coverage in November after taking a part-time job as a teaching assistant at a Tampa elementary school last year. Mastrototaro, 47, cares for a disabled teenage son and likely would not need to meet Florida’s proposed work requirement.

But she said her biweekly wages from working about 17 hours a week pushed her past the Medicaid income limit. She has struggled to afford her prescription medications since.

“What I’m making is nothing,” Mastrototaro said. “I am scavenging just to make ends meet.”

The Gaetz-led proposal ignores “the hard realities of what it takes to be qualifying for Medicaid in Florida,” said , executive director of Florida Voices for Health, a nonprofit that advocates for Medicaid expansion. “On its face,” he said, “it doesn’t make sense.”

Medicaid experts say the holds that nonexpansion states cannot adopt work requirements.

A state that hasn’t added more low-income adults to its Medicaid program can’t impose work requirements on those who are already covered, Cuello said. States must cover specific categories of low-income people — such as children, pregnant women, some parents, older adults, and people with disabilities — to receive federal funding for their programs.

States that have expanded Medicaid eligibility to a limited group of low-income adults, namely Georgia and Wisconsin, will be required to impose work requirements on those enrollees.

, launched in July 2023, already includes a requirement that newly eligible adults report at least 80 hours of work or community engagement. Federal approval for the program expires at the end of December, and the state . will have to implement a work requirement by Jan. 1.

South Carolina applied in June for federal approval to to nondisabled parents and caregivers ages 19 to 64 who earn 67-100% of the federal poverty level. That’s about $18,300 to $27,300 a year for a family of three. The state’s application is pending with CMS, and if approved would implement work requirements for those newly eligible adults.

Gaetz said if the Florida legislation were approved, the state would develop a “business plan” for implementing work requirements and seek CMS approval.

It is unclear how much it would cost, but experience in states with Medicaid work requirements suggests that implementation would be expensive. States must upgrade their eligibility and enrollment systems, hire additional staff, and inform the public of the new mandate.

For its program, Georgia spent about $54.2 million on administrative changes out of $80.3 million in total spending for the program from October 2020 to March 2025, according to from the U.S. Government Accountability Office. Most of the administrative spending — about $47.4 million, or 88% — came from the federal government.

Georgia’s experience echoes others’, according to a 2019 of states that received approval to implement Medicaid work requirements during the first Trump administration. That report focused on five states — Arkansas, Indiana, Kentucky, New Hampshire, and Wisconsin — and estimated costs would total $408 million. They ranged from $6 million in New Hampshire to more than $270 million in Kentucky, though those figures did not reflect all the state costs.

Florida’s computer infrastructure for collecting and verifying information and determining eligibility is more than 30 years old and is being replaced. That is anticipated to be completed in 2028 and cost more than $180 million.

A legislative analysis of Gaetz’s bill estimated that if 1 in 4 people affected by the proposed work requirement were to lose Medicaid coverage, the state could save about $80 million a year.

Darius, with Florida Voices for Health, said those potential savings hardly seem worth the effort.

“It requires the state to build this giant regulatory-like framework and to rebuild systems, and to employ a whole set of people to chase down the very small number of folks who would ultimately be touched by this,” he said.

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That’s the case in New Orleans, where an investigation by Verite News found high lead levels in about half of the playgrounds on city property and found in most homes that tested their drinking water in a voluntary program.

No level of lead exposure is safe, according to federal environmental officials, but undertaking a comprehensive cleanup can be financially prohibitive. New Orleans is facing a $220 million budget deficit that has led to city employee furloughs and layoffs.

Congress allocated $15 billion over five years to lead pipe replacement under the Bipartisan Infrastructure Law, a Biden-era measure set to expire at the end of this year. In 2024, the Environmental Protection Agency also tightened the standards for lead-contaminated soil for the first time in 30 years and mandated that water systems by late 2037.

But passed by Congress and signed by President Donald Trump in January redirected $125 million of that lead remediation money to wildfire prevention. And since October, the EPA has partially rolled back protections against soil contamination, raising the federal hazard level in urban areas and the threshold for removing contaminated soil.

Tom Neltner, the national director of the nonprofit advocacy group Unleaded Kids, said it was the first time an administration had loosened the limits on lead in soil.

“ We’ve seen the Trump administration say positive things about its commitment to lead but then take actions that undermine that,” Neltner said.

But, he added, progress is still being made in some communities.

EPA press secretary Brigit Hirsch said the changes made under the Trump administration have reduced confusion and uncertainty that could hamper cleanup efforts.

“The Trump EPA’s record on protecting Americans — especially American children — from lead is unmatched,” Hirsch said in an emailed statement. “In just the last year, the Trump EPA backed up its commitment to reducing lead exposure in children with BILLIONS of dollars and historic action.”

She cited a of $3 billion available to pay for water pipe replacement. That money is from the passed during the Biden administration.

Verite News spoke with people in Michigan, Indiana, and Rhode Island to learn how they addressed their lead pollution, with the aim of finding options that could be applied in New Orleans and other cities.

“ We don’t need to do research on lead anymore,” said Tulane University professor Felicia Rabito, an epidemiologist who researches the toxic metal and its sources. “What we need are policies to get the lead out of the environment.”

Benton Harbor, Michigan: Lead Pipes Begone

Benton Harbor, a predominantly Black beach town of about 9,000 people on the southeastern shore of Lake Michigan, spent three years out of compliance with federal drinking water standards. The concentration of lead in the water remained dangerously high until residents and organizations petitioned the EPA in 2021, drawing responses from state and federal officials.

“Nobody should be drinking lead in their water for this long,” said Elin Betanzo, an engineer who provided the petitioning residents with technical support.

That year, federal officials issued an for the Michigan city to bring its water supply into compliance, and the state required Benton Harbor to replace all its lead pipes within 18 months. Gov. Gretchen Whitmer, a Democrat, committed to securing funding in the state budget for the $35 million effort, which included bottled water distribution and paying outstanding water bills for low-income residents. The state, alongside the city, allocated money from its general fund, secured regional water loans, and cobbled together grants from several federal programs to cover the total.

By the end of 2023, city officials had completed the project. Now it’s one of 21 municipalities in Michigan that have replaced all their lead pipes. Benton Harbor had more than 4,500 pipes to replace.

The Trump administration has said it would defend the Biden-era mandate for lead pipe replacement by 2037 against a lawsuit challenging it.

Betanzo recommended that utilities in other cities reduce barriers to line replacement to increase efficiency, as Benton Harbor’s water system did.

City officials saved time after assuming most pipes would be lead. They decided to go street by street, digging up, inspecting, and replacing nearly every pipe. If the pipe wasn’t lead, it wasn’t replaced, but nearly all were, Betanzo said.

Concentrating the mass replacement in one zone at a time made the contracts more cost-effective, Betanzo added. Contractors bid on zones in the city, and multiple contractors worked in different neighborhoods simultaneously. For transparency, progress was published on a public database.

The city also passed a law requiring lead lines be replaced, including those on customers’ side of the water meter. All residents had to allow the contractors onto their property or face disconnection. The residents didn’t pay for the line replacements.

“ The health benefits of lead service line replacement are greatest the sooner you get it done,” Betanzo noted, referencing a she co-authored. “If you do it wrong, you can absolutely increase exposure to lead through a lead service line replacement.”

Completion of full pipe replacement is rare in the U.S., because of the cost, poor service line tracking, the time it takes, and the prioritization of other issues. In New Orleans, the process could require up to $1 billion of investment over 10 years, according to the city’s Sewerage and Water Board.

Indianapolis: Safe Dirt for Kids

It’s not just lead pipes that are problematic. In 2024, a in the academic journal GeoHealth estimated that nearly a quarter of homes in the U.S. have unsafe levels of lead in the soil on their properties.

To that end, Indianapolis has taken some actions that other cities can learn from, said Gabriel Filippelli, a professor at the Indiana University-Indianapolis School of Science who led the study and has researched the risk of lead exposure through soil for years.

The Indy Parks & Recreation department partnered with Filippelli’s team to test a dozen parks relatively close to the contaminated site of a shuttered lead smelter.

Out of all the parks tested, Filippelli’s team found only one hot spot, beneath an old bench from which lead-based paint had flaked off into the surrounding soil.

The parks department followed Filippelli’s suggestion to replace the bench and add concrete and a thick layer of mulch and plants on the ground, so kids wouldn’t be able to play directly in the contaminated dirt.

“It was a relatively low-cost intervention,” he said, estimating it cost a few thousand dollars. The ground wasn’t excavated, and new dirt wasn’t brought in. “If you deal with it by dilution and by capping, remove the source, you’re solving the problem for today and probably many, many years to come.”

The contaminated dirt may need to be removed in some cases and replaced with clean soil, such as after severe, widespread pollution from industrial sources. But Filippelli said such extensive remediation can be impractical and too expensive for cities to undertake on their own.

Where full remediation is cost-prohibitive, Filippelli said, there are more creative solutions, like landscaping, covering the area with new dirt, or mulching. These methods won’t eliminate the lead entirely, but they will significantly reduce exposure risk.

“You can eliminate the hazard at a fraction of the cost,” he said.

Cities could also look to New York City’s , which places uncontaminated soil left over from construction projects in neighborhood-level banks for volunteers to distribute, he said.

Rhode Island: Stopping Lead at the Source

New England, home to some of the nation’s oldest homes, has led the U.S. in mitigating one of the largest ongoing sources of lead contamination: paint.

In 2023, the state legislature in Rhode Island, where most of the homes were built before lead paint was banned in 1978, passed strengthening the state’s ability to enforce tenant protections.

Prior to 2023, the state had long required most landlords to have their property inspected to ensure it met “lead safe” guidelines, said DeeAnn Guo, a community organizer for the . Although no level of lead is considered safe, replacing windows and doors that have lead paint, painting over all interior and exterior walls, and mitigating contaminated soil significantly reduce the risk of exposure.

But for years “there was no incentive to do it,” Guo said, “aside from it being the right thing to do.”

Now, landlords can be fined if they don’t have an active lead certificate on file for homes built before 1978, and the property has to be inspected every two years to remain in compliance. Before the new law, less than 15% of rentals were certified. In late 2025, that had increased to 40%, Guo said.

The state has also seen a steady decline in the in children’s blood.

Guo said it helps that the state has federal funding from the Department of Housing and Urban Development to subsidize its If a homeowner or landlord owns an old house, they can apply for the state to send an inspector. If lead is found, the state will then send a certified contractor to address the problem at little to no cost to the property owner.

Rhode Island prioritizes low-income households and homes with pregnant women or children under 6 years old, because of the heightened health risk. It can also help pay to remediate homes if a child living there has elevated levels of lead in their blood.

States and communities looking to start a successful lead paint abatement program using HUD money should combine strong enforcement, public education, and offers of subsidies, Guo said. It also helps to include community members in the planning process, she said.

Under the Trump administration, however, it might become harder for more communities like New Orleans to receive money for a “lead safe” program. Last year, HUD asked Congress to eliminate new funding for its lead hazards program, stating it would be restored in 2027. But advocates for more lead protections argue that once funding is lost, it is unlikely to be approved again.

“It shows the White House’s hypocrisy, where they talk about lead as being important and then propose eliminating the funds that are essential to cleaning up affordable housing,” said Neltner, the Unleaded Kids director. “This administration talks about the importance of children and then seems to be careless about children’s brains.”

This article was produced in collaboration with . The four-month investigation was supported by a Kozik Environmental Justice Reporting grant funded by the National Press Foundation and the National Press Club Journalism Institute. It was also produced as a project for the USC Annenberg Center for Health Journalism’s National Fellowship fund and Dennis A. Hunt Fund for Health Journalism.

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The legislation introduced in , , , , , , , and builds on efforts made in other states in past years. This latest push for patient protections comes as the Trump administration has backed away from federal debt protections, health care has become , and more people are expected to go without medical coverage or but riskier high-deductible insurance plans that could lead them into debt.

“In the wealthiest country on Earth, people are going bankrupt, suffering wage garnishment, just because they get sick,” said Colorado state Rep. , a Democrat who introduced legislation on Feb. 19 that would, among other measures, ban wage garnishment for medical debt.

That legislation is under consideration after a Ñî¹óåú´«Ã½Ò•îl Health News investigation found that courts approved wage garnishment requests in an estimated 14,000 medical debt cases a year in Colorado. The investigation also showed that it isn’t just urban hospitals or big health care chains allowing their patients’ wages to be garnished. It’s also small rural hospitals, physician groups, and public ambulance services, among other medical care providers. And the reporting showed that wage garnishment can erroneously target patients. For example, one family lost wages — and subsequently power to their home, because they couldn’t pay their electric bill — after an ambulance company incorrectly billed the family instead of Medicaid.

Wage garnishment is one tool creditors can use in most states to recoup money from people with unpaid bills. In many states, they can garnish someone’s bank account or put a lien on their home, too. To garnish a person’s wages, a creditor must typically get permission from a court to make the person’s employer hand over a piece of the debtor’s earnings.

“The creditor is taking the money directly out of somebody’s paycheck, and so it doesn’t leave people with any choice to say, ‘I need to prioritize food for my children,’” said , legal and policy director for the National Center for Access to Justice. The center, based at Fordham Law School, and the District of Columbia on how fair their laws are to consumers who get sued over debt.

It is legal to garnish patients’ wages for medical debt in all but a , according to the Commonwealth Fund, a nonprofit foundation based in New York focused on health care.

Now, lawmakers in additional states seek to ban the practice entirely. Others want to limit it by exempting debtors whose household income falls under a certain threshold or by upping the amount of earnings immune from garnishment.

Such policies on wage garnishment fit into a larger push around the country to address the effect of medical debt on people’s lives and finances. Those efforts include barring medical debt from credit reports, prohibiting liens on people’s homes, capping interest rates, and limiting the ability to file lawsuits against people with low incomes over unpaid medical bills.

Debt collectors have fought against such measures, arguing they don’t solve the problem of health care affordability and hurt the ability of medical providers to continue to provide care.

“The wage garnishment process is already highly regulated at the federal and state level and includes many consumer protection measures,” said Scott Purcell, chief executive of , an association of credit and collection professionals.

Even before the Colorado legislation was introduced, BC Services warning its clients that the legislation “poses an existential threat,” especially to rural health providers. And Bridget Frazier, a spokesperson for the , said Feb. 20 that the bill “could drive up costs and financial risk for health care providers, making it harder to keep hospitals sustainable and ensuring Coloradans have access to care when they need it most.”

The pending Colorado measure would ban wage garnishment for all patients. It also would limit bank garnishments, in which a patient’s financial institution must hand over a chunk of the money in the person’s account. Additionally, among other things, it would prevent payment plans from exceeding 4% of weekly net income, require creditors to check whether uninsured patients are eligible for public health insurance before collecting, bar creditors from collecting on bills that are more than three years old, and leave medical care providers liable to the patient for at least $3,000 if collectors don’t comply.

“No one is saying, ‘Don’t get paid for your services.’ We’re saying getting health care should not lead to financial ruin for people,” said Dana Kennedy, co-executive director at the Denver-based , a health advocacy group that has been working with lawmakers on the Colorado measure.

Kennedy said that Ñî¹óåú´«Ã½Ò•îl Health News’ investigation drove home how many kinds of Colorado health care facilities are willing to let this collection practice happen to their patients, and that the people whose wages are being garnished are often working at Family Dollar, Walmart, Amazon, or gas stations and restaurants.

“Medical debt is typically different from other forms of indebtedness,” said Colorado state Sen. , a Democrat co-sponsoring the legislation. “You could choose to keep driving your old car or buy a new one and take on debt for that. You could upgrade your home. You could buy consumer appliances. There’s not usually that voluntary element in a health care context.”

, a senior attorney with the National Consumer Law Center, said broad laws that don’t require patients to jump through hoops to access protections are the most likely to be effective. Because of that, she and other consumer advocates prefer state policies that get rid of wage garnishment for all debtors and all types of debt.

“It can be hard to identify medical debt as medical debt,” Carter said. “For example, if you have a medical debt and you put it on your credit card, it’s not going to be easy for a court system to identify that debt as medical debt.”

She said another reason is that complexity is the enemy of effectiveness. Carter pointed to a showing that even though people in the state can keep $10,000 in their bank accounts safe from garnishment, few consumers take advantage of the protection. They must know the protection exists, know where to find the relevant form, get the form notarized, file it, and mail copies to creditors. The same report found that garnishments can also be burdensome for employers, who must process garnishments and can find themselves in court if they make an error.

Jones, at the National Center for Access to Justice, said outlawing wage garnishment fully, rather than limiting it, has other benefits. “It’s also to protect people’s jobs, because in most states, if somebody has two or more orders of garnishment, they can lose their job for it,” she said.

Still, some lawmakers are pushing for the intermediate route. In Washington state, Democratic state Sen. is spearheading legislation to rope off a larger portion of low-wage earnings from garnishment. So, for example, a person making $1,000 a week would be able to keep their whole paycheck, as opposed to the $800 that the law would currently protect.

Mindy Chumbley, owner of a Washington-based collections company and an ACA International board member, testified against the bill on Feb. 2. “Washington has made sweeping changes to medical debt policy year after year without pausing to study the cumulative impact,” she told lawmakers. “Our clients are reporting clinic closures, urgent care centers shutting down, staffing shortages, and rural facilities struggling to stay open.”

The Washington State Hospital Association said it is neutral on the legislation. The American Hospital Association said it does not take positions on state policies.

Liias told Ñî¹óåú´«Ã½Ò•îl Health News that lawmakers need to ensure health care providers can recoup their costs while also protecting patients. “We don’t want families either to be driven into bankruptcy or to be driven into under-the-table work to avoid these garnishment thresholds,” he said.

Liias said his measure follows the lead of Arizona, which passed similar consumer protections in 2022. “Obviously, the health care system is still functioning in Arizona, and folks are able to make it work.”

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Dressed in blue with a big ribbon in her blond curls, the 3-year-old sat in her mother’s lap carefully enunciating a classmate’s first name after hearing the words “best friend.” Just months ago, Gaile Osborne didn’t expect her adoptive daughter would make friends at school.

Diagnosed with autism at 14 months, Aubreigh Osborne started this year struggling to control outbursts and sometimes hurting herself. Her trouble with social interactions made her family reluctant to go out in public.

But this summer, they started applied behavior analysis therapy, commonly called ABA, which often is used to help people diagnosed with autism improve social interactions and communication. A tech comes to the family’s home five days a week to work with Aubreigh.

Since then, she has started preschool, begun eating more consistently, succeeded at toilet training, had a quiet, in-and-out grocery run with her mom, and made a best friend. All firsts.

“That’s what ABA is giving us: moments of normalcy,” Gaile Osborne said.

But in October, Aubreigh’s weekly therapy hours were abruptly halved from 30 to 15, a byproduct of her state’s effort to cut Medicaid spending.

Other families around the country have also recently had their access to the therapy challenged as state officials make deep cuts to Medicaid — the public health insurance that covers people with low incomes and disabilities. North Carolina attempted to cut payments to ABA providers by 10%. Nebraska cut payments by nearly 50% for some ABA providers. Payment reductions also are on the table in Colorado and Indiana, among other states.

Efforts to scale back come as state Medicaid programs have seen spending on the autism therapy balloon in recent years. Payments for the therapy in North Carolina, which were $122 million in fiscal year 2022, are in fiscal 2026, a 423% increase. Nebraska saw a 1,700% jump in spending in recent years. Indiana saw a 2,800% rise.

Heightened awareness and diagnosis of autism means more families are seeking treatment for their children, which can range from 10 to 40 hours of services a week, according to Mariel Fernandez, vice president of government affairs at the . The treatment is intensive: Comprehensive therapy can include 30-40 hours of direct treatment a week, while more focused therapy may still consist of 10-25 hours a week, released by the council.

It’s also a relatively recent coverage area for Medicaid. The federal government autism treatments in 2014, but not all covered ABA, which Fernandez called the “gold standard,” until 2022.

State budget shortfalls and the nearly $1 trillion in looming Medicaid spending reductions from President Donald Trump’s One Big Beautiful Bill Act have prompted state budget managers to trim the autism therapy and other growing line items in their Medicaid spending.

So, too, have a series of state and federal audits that raised questions about payments to some ABA providers. A of Indiana’s Medicaid program estimated at least $56 million in improper payments in 2019 and 2020, noting some providers had billed for excessive hours, including during nap time. A similar audit in Wisconsin estimated at least $18.5 million in improper payments in 2021 and 2022. In Minnesota, state officials had into autism providers as of this summer, after the late last year as part of an investigation into Medicaid fraud.

Families Fight Back

But efforts to rein in spending on the therapy have also triggered backlash from families who depend on it.

In North Carolina, families of 21 children with autism filed a lawsuit challenging the 10% provider payment cut. In Colorado, a group of providers and parents is over its move to require prior authorization and reduce reimbursement rates for the therapy.

And in Nebraska, families and advocates say cuts of the magnitude the state implemented — from 28% to 79%, depending on the service — could jeopardize their access to the treatment.

“They’re scared that they’ve had this access, their children have made great progress, and now the rug is being yanked out from under them,” said Cathy Martinez, president of the , a nonprofit in Lincoln, Nebraska, that supports autistic people and their families.

Martinez spent years advocating for Nebraska to mandate coverage of ABA therapy after her family went bankrupt paying out-of-pocket for the treatment for her son Jake. He was diagnosed with autism as a 2-year-old in 2005 and began ABA therapy in 2006, which Martinez credited with helping him learn to read, write, use an assistive communication device, and use the bathroom.

To pay for the $60,000-a-year treatment, Martinez said, her family borrowed money from a relative and took out a second mortgage before ultimately filing for bankruptcy.

“I was very angry that my family had to file bankruptcy in order to provide our son with something that every doctor that he saw recommended,” Martinez said. “No family should have to choose between bankruptcy and helping their child.”

Nebraska mandated insurance coverage for autism services in 2014. Now, Martinez worries the state’s rate cuts could prompt providers to pull out, limiting the access she fought hard to win.

Her fears appeared substantiated in late September when Above and Beyond Therapy, one of the largest ABA service providers in Nebraska, notified families it planned to terminate its participation in Nebraska’s Medicaid program, citing the provider rate cuts.

Above and Beyond’s website advertises services in at least eight states. The company was paid more than $28.5 million by Nebraska’s Medicaid managed-care program in 2024, according to a . That was about a third of the program’s total spending on the therapy that year and four times as much as the next largest provider. CEO Matt Rokowsky did not respond to multiple interview requests.

A week after announcing it would stop participating in Nebraska Medicaid, the company reversed course, citing a “tremendous outpouring of calls, emails, and heartfelt messages” in a letter to families.

Danielle Westman, whose 15-year-old son, Caleb, receives 10 hours of at-home ABA services a week from Above and Beyond, was relieved by the announcement. Caleb is semiverbal and has a history of wandering away from caregivers.

“I won’t go to any other company,” Westman said. “A lot of other ABA companies want us to go to a center during normal business hours. My son has a lot of anxiety, high anxiety, so being at home in his safe area has been amazing.”

Nebraska officials the state previously had the highest Medicaid reimbursement rates for ABA in the nation and that the new rates still compare favorably to neighboring states’ the services are “available and sustainable going forward.”

States Struggle With High Spending

State Medicaid Director said his agency is closely tracking fallout. Deputy Director said that while no ABA providers have left the state following the cuts, one provider stopped taking Medicaid payments for the therapy. New providers have also entered Nebraska since officials announced the cuts.

One Nebraska ABA provider has even applauded the rate cuts. Corey Cohrs, CEO of , which has seven locations in the Omaha area, has been critical of what he sees as an overemphasis by some ABA providers on providing a blanket 40 hours of services per child per week. He likened it to prescribing chemotherapy to every cancer patient, regardless of severity, because it’s the most expensive.

“You can then, as a result, make more money per patient and you’re not using clinical decision-making to determine what’s the right path,” Cohrs said.

Nebraska put a on the services without additional review, and the new rates are workable for providers, Cohrs said, unless their business model is overly predicated on high Medicaid rates.

In North Carolina, Aubreigh Osborne’s ABA services were restored largely due to her mother’s persistence in calling person after person in the state’s Medicaid system to make the case for her daughter’s care.

And for the time being, Gaile Osborne won’t have to worry about the legislative squabbles affecting her daughter’s care. In early December, North Carolina Gov. Josh Stein canceled all the Medicaid cuts enacted in October, citing lawsuits like the one brought by families of children with autism.

“DHHS can read the writing on the wall,” , announcing the state health department’s reversal. “That’s what’s changed. Here’s what has not changed. Medicaid still does not have enough money to get through the rest of the budget year.”

Osborne is executive director of Foster Family Alliance, a prominent foster care advocacy organization in the state, and taught special education for nearly 20 years. Despite her experience, she didn’t know how to help Aubreigh improve socially. Initially skeptical about ABA, she now sees it as a bridge to her daughter’s well-being.

“It’s not perfect,” Osborne said. “But the growth in under a year is just unreal.”

Do you have an experience with cuts to autism services that you’d like to share? Click here to tell Ñî¹óåú´«Ã½Ò•îl Health News your story.

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In Alaska and Michigan, legislators are nonetheless advancing bills to keep medical debt off consumer credit reports.

The attorneys general of California and Colorado said they would stand behind credit reporting laws enacted in those states in recent years, even as Colorado faces a lawsuit from debt collectors contesting such laws.

Indiana and Ohio lawmakers have dropped proposals to remove medical debt from credit reports but are pushing legislation that would extend other protections to patients who cannot pay their medical bills.

“ of Alaska voters don’t think credit reports should include medical debt,” said state Rep. , a Democrat there. “I’m not going to wait on the courts on the medical debt issue.”

An estimated 100 million Americans are . And a growing number of red and blue states have enacted laws to protect patients.

But federal policy on such debt boomeranged this year when President Donald Trump’s administration chose not to defend that would have removed medical debt from all Americans’ credit scores. And in October, Trump’s Consumer Financial Protection Bureau do not have the authority to regulate consumer credit reports.

“It’s sort of a head-spinning, 180-degree reversal,” said , an attorney with the National Consumer Law Center, which advocates for people with low incomes. She called the Consumer Financial Protection Bureau, now led by Project 2025 architect , the “evil twin” of its predecessor under President Joe Biden.

The bureau did not respond to requests for comment.

Eight days after the new federal guidance, debt collectors filed a lawsuit contesting Colorado’s 2023 medical debt credit reporting law, the first to require removal of some or all medical debt from credit reports.

Scott Purcell, CEO of , which is a debt collection trade group and a plaintiff in the Colorado suit, said removing the debt makes it harder to gauge creditworthiness, which he said would lead creditors to assume everyone is a riskier bet.

His also argues the Colorado law violates the First Amendment by suppressing “truthful commercial speech.”

Colorado Attorney General Phil Weiser, a Democrat, called the lawsuit outrageous in a statement to Ñî¹óåú´«Ã½Ò•îl Health News. His office, he said, “will strongly oppose all efforts to strip away critical medical debt protections.”

In California, Attorney General Rob Bonta, too, is standing firm on his state’s law regardless of how federal officials now interpret state rights. The Democrat told constituents in a : “Let me be clear: This remains the law in California.”

In other states still contemplating credit reporting laws, legislators are adjusting their strategy to account for the lawsuit and the Trump administration’s moves, by either ditching the plan to remove medical debt from credit reports or modifying such legislation.

Wu said her organization saw the federal change coming and had already urged state lawmakers to make pending legislation on credit reporting more lawsuit-proof by looking upstream and downstream of the credit reporting agencies. For example, Wu said, states can tell landlords, employers, or other credit report perusers that they cannot use a person’s medical debt history in their decision-making. And states can require health providers to include, in their contracts with debt collectors, limits on what they can tell credit reporting agencies about the bills they’re collecting.

“You’ll often hear providers say, ‘Oh, well, we don’t want to hurt our patients’ credit,’” she said. “Tell the debt collectors, ‘Don’t report this.’”

Alaska’s legislation has both elements: It bars landlords from making decisions about potential renters based on their medical debt history, and it bars providers and collectors from telling credit reporting agencies about patient debt.

Elsewhere, state lawmakers have opted out of trying to pass credit reporting provisions in proposed legislation. Indiana state Sen. , a Democrat, that tries to, among other things, cap interest rates, limit wage garnishment, and keep people from losing their homes over unpaid bills from medically necessary procedures. But he and his colleagues made a tactical decision to leave out credit reporting, after unsuccessfully including it in a similar bill last year.

“It’s out of legislative pragmatism,” Qaddoura said. “We want to be sure that you don’t get a piece of legislation killed with many benefits to tens of thousands of families just because one provision can’t go in.”

In Ohio, Democratic state Rep. made a similar calculation. She has been working on to ban wage garnishment over medical debt, cap interest rates for such debt at 3%, and scratch it from credit reports. She said she and other lawmakers recently removed the credit reporting portion.

“It’s better to pass something than nothing at all,” Grim said. “It still bans wage garnishment, which is a very aggressive, more-common-than-you-think practice. And it caps the interest rate.”

A recent found that, in Colorado alone, thousands of people each year have their wages garnished to pay back medical bills, and some people taken to court for medical debts never actually owed the money.

Legislative efforts to protect people from the effects of medical debt are often bipartisan, but that doesn’t mean they pass easily. Even before the Consumer Financial Protection Bureau reversed its stance on credit reports, several measures this year, and legislation failed in Wyoming and South Dakota that aimed to take medical debt off credit reports.

Americans are largely protected from having their credit scores dinged by small medical debts. In 2023, the three big credit bureaus — TransUnion, Equifax, and Experian — to remove medical debts under $500 from their credit reports, and the Consumer Data Industry Association, a trade group for the companies, confirmed they are still doing so.

Even so, lawmakers in several states said they are deciding whether and how to get ahead of the federal guidance with legislation that tackles additional, larger medical debt on credit reports.

“We know that this will need to get beefed up,” said , a Democratic state senator in Michigan, of . She isn’t sure what that will look like, though consumer advocates including Libby Benton hope to see the measure follow Wu’s strategy.

“These aren’t debts that people choose to take on. People might choose to buy a huge pickup truck and that’s a bad financial decision,” said Benton, director of the Michigan Poverty Law Program. “People don’t choose to have emergency heart bypass surgery.”

Yet both can end up on a credit report.

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The 27-year-old resident of Bloomington, Indiana, has a pacemaker and a painful joint disease. She also has fused vertebrae in her neck from a spinal injury, preventing her from turning her head.

Indiana’s Medicaid agency currently considers Brader “medically frail,” giving her access to an expanded set of benefits, such as physical therapy.

New federal rules will require more than 18 million Medicaid enrollees nationwide to show they’re working, volunteering, or going to school for 80 hours a month starting in 2027 to keep their coverage. Brader is exempt as long as she’s deemed medically frail.

But lacking sufficient federal guidance, states are wrestling with how to define medical frailty — a consequential decision that could cut Medicaid coverage for many people, said state officials, consumer advocates, and health policy researchers.

“It’s terrifying,” Brader said. “I already have fought so hard to get my health care.”

‘Incredibly High’ Stakes

President Donald Trump’s One Big Beautiful Bill Act slashes nearly $1 trillion from Medicaid over the next decade, with much of the savings projected to come from no longer covering those who don’t qualify under the new work rules. Those spending cuts help offset the costs of GOP priorities, such as extra border security and tax cuts that mainly benefit the wealthy.

Conservative lawmakers have argued that Medicaid, the government health insurance program for people with low incomes or with disabilities, has grown too large and expensive, especially in the wake of its expansion to more low-income adults under the Affordable Care Act. They also say that requiring participants to work is common sense.

The work rules in Trump’s tax-and-spending law offer exemptions for several groups who might struggle to meet them, including people deemed “medically frail.” The law spells out certain “medically frail” conditions such as blindness, disability, and substance use disorder. But it does not list many others.

Instead, the law exempts those with a “serious or complex medical condition,” a term whose interpretation could vary by state.

State officials say they need more clarity to ensure that people who cannot work for health reasons retain rightful access to Medicaid. They also worry that, even with a clear definition, people will face the onerous task of having to regularly vouch for being medically frail, which is a challenge without reliable access to medical care.

“The stakes are incredibly high,” said Kinda Serafi, a partner at consulting firm Manatt Health.

The new work requirements will affect Medicaid recipients in 42 states and Washington, D.C. Eight states — Alabama, Florida, Kansas, Mississippi, South Carolina, Tennessee, Texas, and Wyoming — did not expand their Medicaid programs to cover additional low-income adults, so they won’t have to implement the work rules.

The Medicaid work rules are expected to be the over the next decade, according to the nonpartisan Congressional Budget Office.

Forty-four percent of all adults covered by states’ expanded Medicaid programs , according to KFF.

A Challenge for States

State Medicaid agencies are scrambling to implement the rules with little direction from the U.S. Department of Health and Human Services, which has yet to issue specific guidance. Federal officials will clarify the “medically frail” definition next year, said Andrew Nixon, an agency spokesperson.

Ultimately, states will have to decide who is unhealthy enough to be exempt from work rules. And it won’t be easy for state workers and their computer systems to track.

Every year, state eligibility systems screen millions of applicants to check if they qualify for Medicaid and other government programs. Now, these same systems must screen applicants and existing enrollees to determine whether they meet the new work rules.

Jessica Kahn, a partner at consulting firm McKinsey & Co., has urged states to start planning how to adapt eligibility systems to verify work status. States can do a “tremendous amount” of work without direction from the federal government, said Kahn, a former federal Medicaid systems official, who spoke during a recent Medicaid advisory panel hearing. “Time is a-wasting already.”

State Medicaid directors are pondering the challenge.

“Medical frailty gets so complex,” Emma Sandoe, Oregon’s Medicaid director, said during a recent panel discussion. Conditions that can keep people from working, such as mental health disorders, can be hard to prove, she said.

A state might try to use data pulled from a person’s health records, for instance, to determine medical frailty. But information from a patient’s chart may not paint a clear picture of someone’s health, especially if they lack regular access to medical care.

It’s a tall order for eligibility systems that historically have not had to scrape medical records to screen applicants, said Serafi of Manatt Health.

“That is an incredibly new thing that eligibility enrollment systems are just not fluent in at all,” Serafi said.

Lobbying groups for the private health insurance companies that help run Medicaid in many states also have urged federal regulators to clearly define medical frailty so it can be applied uniformly.

In a Nov. 3 letter to federal officials, the Medicaid Health Plans of America and the Association for Community Affiliated Plans advocated for allowing enrollees to qualify for the exemption by saying on their applications that they have conditions that make them medically frail. Successfully implementing exemptions for the medically frail will be “crucial” given the “severe health risks of coverage loss for these populations,” the groups said.

Some state officials worry about unintended consequences of the work rules for people with chronic conditions.

Jennifer Strohecker, who recently resigned as Utah’s Medicaid director, reiterated the high stakes, especially for those with diabetes on Medicaid. They may be very healthy and functional with insulin, but if they fail to complete the work requirements, that may change, Strohecker said during a recent Medicaid advisory hearing.

Whether someone is deemed medically frail already depends heavily on where they live.

For example, in Arkansas, people indicate on their Medicaid applications that they’re disabled, blind, or need help with daily living activities.

Approximately 6% of the roughly 221,000 people enrolled in Arkansas’ Medicaid expansion program are deemed medically frail, according to Gavin Lesnick, a spokesperson for the Arkansas Department of Human Services.

In West Virginia, the state accepts a medical frailty designation when an applicant self-reports it.

The burden of proof is higher in North Dakota. Applicants there must answer a questionnaire about their health and submit additional documentation, which may include medical chart notes and treatment plans. More than half of applicants were denied last year, according to Health and Human Services Department spokesperson Mindy Michaels.

Indiana’s Family and Social Services Administration, which runs its Medicaid program, declined an interview and said it could not comment on individual cases, like Brader’s.

Brader worries the additional red tape will cause her to lose Medicaid again. She said she was temporarily kicked off the program in 2019 for failing to meet the state’s work rules when Indiana said her work-study job didn’t count as employment.

“Anytime I have tried to receive help from the state of Indiana, it has been a bureaucratic nightmare,” she said.

As states await federal guidance, Kristi Putnam, a senior fellow at the conservative Cicero Institute and former secretary of the Arkansas Department of Human Services, which oversees the state Medicaid program, said even if a state creates an extensive list of qualifying “medically frail” conditions, the line must be drawn somewhere.

“You can’t possibly create a policy for exemptions that will catch everything,” she said.

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