The decision by federal officials, citing authority granted under President Donald Trump’s signature tax-and-spending law, suggests the GOP-led state’s predicament could foretell other repercussions in how states are allowed to run the program under federal waivers.

Nearly every state has at least one waiver to run its Medicaid program differently than required by federal law, such as allowing the use of private managed-care plans or expanding eligibility for mental health or long-term care services. Some Medicaid waivers have stretched decades, renewed by presidential administrations of both parties, effectively making the demonstration programs they created permanent.

Arkansas is one of a dozen states with a waiver expiring Dec. 31 that face the additional restrictions the Trump administration has placed on new or renewed waivers.

Though it has yet to finalize its decision, the federal Centers for Medicare & Medicaid Services said Arkansas’ 13-year-old waiver does not comply with new “budget neutrality” rules that take effect in January, said Gavin Lesnick, a spokesperson for the Arkansas Department of Human Services. The rules tighten a policy forbidding Medicaid waivers from increasing federal spending on the program beyond what it would have increased without the waiver.

The state is now seeking a two-year extension after hearing from CMS that its request for a five-year renewal would not be granted. If its Medicaid expansion waiver is not renewed, Arkansas officials have said they will continue offering expanded eligibility through existing Medicaid law, a change that could leave enrollees with access to fewer doctors and other health providers.

Rather than place more people in its traditional Medicaid program serving largely children, pregnant women, and disabled people, Arkansas obtained a waiver to buy Affordable Care Act marketplace policies from private insurers for adults covered by the Medicaid expansion. This “private option” gave enrollees greater choice of doctors and other health providers, because some doctors are more willing to see patients with private coverage, which generally pays more than regular Medicaid.

The move helped cut the state’s uninsured rate by nearly half, but it also ended up costing more than if beneficiaries were covered under Medicaid’s traditional, fee-for-service program.

Critics characterize the new waiver rules as part of a Trump administration effort to dramatically shrink Medicaid, the government program for those who are low-income or disabled, which grew rapidly under Presidents Barack Obama and Joe Biden.

“What we have here is a sneaky way to cut Medicaid expansion and the Medicaid program,” said Nicole Huberfeld, a professor of health law at Boston University.

Medicaid enrollees won’t know whom to blame if they lose coverage because the administration is using arcane regulatory processes to make the changes, Huberfeld said.

At issue are waivers granted by the government that allow states flexibility from existing Medicaid law in how they cover low-income residents, as long as the changes will not increase what Medicaid costs the federal government.

Pivoting from the long-standing practice of checking only retroactively whether states were keeping their budget promises, the Trump administration that it would not renew or approve any waivers unless CMS first certified that they would not increase costs to the federal government.

In its , the agency said the new waiver rules are expected to reduce federal spending.

“Characterizing enforcement of a statutory budget neutrality requirement as a cut misrepresents both the law and this guidance,” CMS spokesperson Timothy Foster said in an email to 吃瓜不打烊. The federal waivers are intended “to test innovative approaches to delivering care, not provide an open-ended mechanism for increasing federal spending.”

Other states with waivers expiring at the end of December include Georgia, which has added about 18,000 low-income people to Medicaid under its waiver, and California, which has used its waiver to expand coverage of social services including food and housing.

California and Georgia Medicaid officials told 吃瓜不打烊 that they are still working with CMS in hopes of renewing their waivers. The loss of federal waiver approval could cause states to curtail benefits or eligibility expansions.

In Arkansas, it would mean redesigning the state’s Medicaid expansion program.

Arkansas’ initial waiver was granted in 2013, when its Democratic governor at the time worked with a Republican-controlled legislature to adopt a pioneering style of Medicaid expansion under the Affordable Care Act.

It was one of the first Southern states to expand Medicaid, granting coverage to many low-income residents. Forty states and Washington, D.C., have also fully expanded Medicaid to cover more low-income adults under the law also known as Obamacare.

The state’s Medicaid expansion enrollees were already facing a confusing time. Starting in January, they will need to prove they work or meet an exemption to be eligible for coverage under Trump’s law, the One Big Beautiful Bill Act. And one of the state program’s two private health insurers 鈥� Centene 鈥� announced in July that it was pulling out at the end of the year.

Sam Dubke, a spokesperson for Republican Arkansas Gov. Sarah Huckabee Sanders, told 吃瓜不打烊 that the Sanders administration is trying to negotiate a temporary extension of its waiver “to ensure impacted Arkansans maintain access to quality, affordable healthcare during this transition period.”

“Looking ahead to the next legislative session, CMS has provided the state with an opportunity for bold, conservative healthcare reform, and the governor will work with her partners in the legislature to build a sustainable model that maintains the same high quality of care and saves taxpayer dollars,” Dubke said.

The Trump administration’s new restrictions on waivers, implemented under the same law that imposes work requirements as a condition of eligibility and reduces Medicaid spending by about $900 billion over a decade, could affect millions of enrollees and billions in spending. About a third of the almost $600 billion in federal spending on Medicaid and the Children’s Health Insurance Program in 2024 supported programs created by waivers, according to CMS.

In a , the Government Accountability Office found that the three-year spending limit the federal government approved for Arkansas’ Medicaid waiver was nearly $800 million more than what the state would have spent through its traditional Medicaid program.

Arkansas is one of several states that expanded Medicaid under the ACA using a waiver, with others including Indiana, Michigan, New Hampshire, and Iowa.

States will have to clear several more bureaucratic hurdles to retain waivers under the new CMS guidance, said Alice Lam, a managing director with consulting and legal firm Manatt. That could lead to fewer benefits or reduce the number of people eligible for Medicaid, she said.

Robert Nelb, director of policy at America’s Essential Hospitals, which represents safety net hospitals, said he and most experts believed when it passed that the One Big Beautiful Bill Act was merely codifying CMS policy on budget neutrality.

But the Trump administration has interpreted the law to restrict states’ use of waivers, he said.

Nelb said many long-standing waivers that have been renewed multiple times are now at risk and that the loss of state waivers could threaten money hospitals rely on to cover uninsured patients and improve care in their communities.

“There is a real concern that this will put added burdens on states up front and slow down new innovations in Medicaid,” Nelb said.

In 2025, the Trump administration told states it would no longer renew Medicaid waivers to help enrollees with job training or to allow continuous eligibility for adults and children for specific time periods without verifying their income eligibility.

This article first appeared on 吃瓜不打烊 and is republished here under a .

When making the appointment, Zordani said, he’d been told the clinic was in his insurer’s network. Upon arrival, Zordani was summoned to the clinic’s financial office and told he had to make a $5,000 preservice deposit, because Mayo had since determined it did not accept his insurance. He was automatically designated “self-pay,” even though his plan had out-of-network benefits.

Not having that kind of cash on hand 鈥� and angry on principle 鈥� he refused. His appointment was canceled.

“I was so livid,” Zordani said, recalling that day in early April 2024. He later learned that Mayo had sent a message to him in his insurance carrier’s patient portal shortly before his visit with an estimate of the cost: $565, not the larger amount it later demanded.

Traditionally, patients usually receive bills for their share only after getting treatment. But what Zordani faced is becoming increasingly common 鈥� hospitals or other medical providers seeking prepayments.

“We regret that this individual’s experience did not meet the high standard of communication we strive to provide when helping our patients understand their insurance coverage and financial responsibility,” Andrea Kalmanovitz, Mayo’s communications director, said in an emailed statement. “When prospective patients don’t have clarity that Mayo Clinic is not in-network with their health plan, unexpected pre-service deposit requests may result.”

says it requires prepayments in a variety of cases, including for “noncontracted” 鈥� also known as out-of-network 鈥� insurance plans.

The trend of hospitals asking for money up front represents a double whammy for patients.

Medical providers are collecting larger shares of what patients might owe at a time when rising deductibles mean patients are owing more for care. The preservice charge could be all or part of a remaining deductible, for example, or a sizable percentage of what the visit or treatment might cost. Those deductibles go up when hospital prices, drug costs, and labor expenses increase, as insurers try to slow premium growth by shifting more costs to patients.

People are “basically being asked to self-insure,” said Richard Gundling, a senior vice president at the Healthcare Financial Management Association, an organization for finance professionals.

As that happens, hospitals figure more patients will have trouble meeting those deductibles, so they want to get as much up front as possible.

“Things like preservice deposits and those kinds of moves are probably going to become more and more likely,” said Chip Kahn, a visiting senior fellow at KFF and the American Enterprise Institute and former president and CEO of the Federation of American Hospitals. “That will make it harder on the provider, the clinician, and harder on the patients.”

The deposits can’t be viewed in isolation, Gundling said: It’s a bigger issue than just hospitals asking for money up front. The challenge, he said, is: “How do we maintain access to care when more patients can’t absorb the level of out-of-pocket costs?”

Already, consumers are increasingly worried about paying for healthcare. A recent found that lower out-of-pocket costs ranked as the top change insured adults would like to see from their coverage plans. KFF is a health information nonprofit that includes 吃瓜不打烊.

The average deductible in family coverage offered by employers is $3,762 per person, , while the average deductible in Affordable Care Act plans to a similar amount, $3,786.

A Consumer Concern

, a health insurance consumer assistance program in New York state, hears from people who are concerned about prepayments, said Diane Spicer, a supervising attorney.

“We see this mostly with insured folks who are seeking out-of-network care but who have out-of-network coverage,” Spicer said, “and also sometimes for care that is not covered.”

Just how many hospitals collect what are often called point-of-service payments is not known, according to Kodiak Solutions, a technology company that provides services to health systems to help manage their revenue.

“But it is becoming more and more the center of many of our conversations with health systems,” said , a vice president leading Kodiak’s revenue cycle intelligence team.

In addition to Mayo, Baltimore-based says that “it is our policy to collect all amounts owed before services are rendered” for non-emergency care. University of Texas-affiliated in Houston, one of the nation’s premier cancer treatment centers, says patients who pay for their own care “will be asked to pay an initial deposit determined by the care center, based on the type of cancer.”

On average, hospitals collect about a quarter of what they expect the patient will owe, Szaflarski said, based on what they estimate the insurer will pay 鈥� a percentage that has grown in recent years.

For example, if a person is coming in for imaging and the insurer will reimburse $1,000 for that scan, the hospital will seek $250 from the patient up front, he said. “That used to be closer to $150.”

It also varies by hospital, and sometimes by state.

“The state of Indiana has some of the lowest cash collections in the country. They are Midwest nice,” Szaflarski said. He added that California and Texas are among those that collect more.

Even as hospitals increasingly collect more upfront payments, however, their uncollected debt is also rising, according to data Kodiak collected from more than 2,300 hospitals nationwide.

said that’s because of a “fundamental shift” in coverage as plans “increasingly feature higher deductibles, greater coinsurance, and more complex cost-sharing structures: all elements that increase the nominal patient responsibility without improving鈥攁nd often reducing鈥攖he probability of collection.”

While many hospitals are doing fine, some, especially in rural areas, have thin margins 鈥� and things could soon tighten further as cuts to ACA and Medicaid funding lead to more people being uninsured.

As a result, hospitals “have to be concerned” about every cost-sharing dollar, Kahn said.

After Zordani returned to Denver, he said, it took a while to find another specialist. He eventually had a procedure in late June 2024, at a Denver hospital not affiliated with Mayo, to fix a .

The following fall, he filed a in Arizona civil court. He was awarded $47,500 in economic damages and attorney fees after an arbitrator in September 2025 determined Mayo violated a state consumer fraud law because it failed to reach him to say that his plan was not in-network before he traveled. Mayo’s statement to 吃瓜不打烊 did not include any reference to the settlement.

“Had they notified me in timely fashion as required, I would not have flown there,” Zordani said. He’s still angry that the clinic didn’t ask his permission before designating his care as self-pay, which meant he wasn’t going to use his insurance, and he’s still unclear on how they calculated the $5,000 preservice amount.

When Do Consumers Have to Make Preservice Payments?

There is one clear rule: In emergency situations, hospitals that accept federal Medicare financing cannot, , demand upfront payment before stabilizing a patient who arrives at an ER, said , a senior fellow and health policy researcher at the Brookings Institution.

Other consumer protections are less clear.

Patients who get in-network care may have some recourse in their contracts with their insurers, so they should check the fine print, experts told 吃瓜不打烊.

“In out-of-network settings, I’m not aware of any barriers that would prevent a provider from doing this,” Fiedler said of preservice deposits.

How those amounts are calculated also appears widely up to the provider and can be opaque.

“They could just say $1,500 and you’d be like, 鈥極h, is that 10%, or is that how much is left on my deductible?’” said , senior director of healthcare campaigns at PIRG, a national federation of independent consumer advocacy groups.

Yet, she added, the patient might be scheduling three months in advance, so the provider wouldn’t know how much was left on the deductible. She recommends consumers ask for an itemized bill and call their insurer to find out whether it has rules regarding the charges.

Also unclear are how and when patients get their money back if they overpay.

Overpayments can happen if patients don’t require the services originally estimated or when insurers pay other bills first, such as the anesthesiology cost or a surgeon’s fees. If those payments are counted toward a patient’s deductible, yet the patient had already made a prepayment to the hospital for the expected deductible, to the hospital.

How soon they get their money back can vary and can depend on state laws, though a small number of states directly address the issue. As of this year, medical providers to reimburse patients within 30 days of a determination of an overpayment. Some states, including Maryland, prohibit certain hospitals from requiring prepayment simply to avoid offering financial assistance.

After alleging that some patients had to wait more than a year to get reimbursed, Arizona Attorney General Kris Mayes recently under state consumer protection laws against SimonMed Imaging, which has 170 locations in 10 states.

, SimonMed agreed to issue refunds within an average of 60 days.

This article first appeared on 吃瓜不打烊 and is republished here under a .

Source: <a href=”; target=_”blank”>Centers for Medicare & Medicaid Services</a>

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吃瓜不打烊 will update this database as more states respond to emails and public records requests for their documents.

Note: Data collected as of Aug. 18, 2026. 吃瓜不打烊 reporters searched state websites, requested documents, and filed public records requests. 吃瓜不打烊 continues to collect documents.

Sources: Documents publicly posted online or released in response to 吃瓜不打烊 requests; <a href=”; target=_”blank”>Centers for Medicare & Medicaid Services</a>

This article first appeared on 吃瓜不打烊 and is republished here under a .

Under a law enacted last year, five of Indiana’s largest nonprofit hospital systems cannot charge patients covered by job-based health plans more than an established price cap. Hospitals that fail to keep prices below the threshold by 2029 risk losing their tax-exempt status 鈥� which would mean owing millions of dollars in state taxes.

Even before that penalty kicks in, the law requires these hospitals, which control nearly half the state’s hospital market, to offer direct-to-employer contracts 鈥� bypassing insurers 鈥� and stay within limits set by the state. Hospitals that don’t comply face a $10,000-a-day penalty.

Many other Indiana hospitals must comply with this provision beginning in September.

Indiana’s law comes amid growing frustration with rising insurance costs and hospital prices, the of growing healthcare costs.

Government price controls, of course, are nothing new in healthcare. Since the mid-1960s, the federal government has set prices it pays hospitals for treating Medicare enrollees, as states do for Medicaid patients. Those two government programs cover more than 135 million people nationwide.

But hospitals face no such government limit on what they charge for the more than 165 million Americans covered by employer-paid insurance.

Indiana isn’t the only state targeting hospital prices. Vermont also limits how much hospitals can charge for people covered by employer plans.

Washington and Oregon have made similar attempts, on a smaller scale, targeting state employee health plans. Oregon’s hospitals cannot charge the state employee plan more than two times the Medicare rate for services. This caps the state payment for a service at $200 if Medicare pays $100. Within the first two years, the plan saved more than $100 million.

Legislation has been proposed in Colorado and New York to enact similar price controls.

Hospital leaders and other opponents of price controls argue that the strategy doesn’t address the root causes of high hospital prices, such as rising labor, drug, and technology costs, and that the caps will force hospitals to cut services. Another challenge is that few employers contract directly with hospitals.

On most policy issues, Indiana and Vermont likely agree on very little, “except for this is one area where they both see that hospital prices are high,” said Brown University economist Christopher Whaley.

Wielding state power to control prices is a strategy typically led by Democrats. But Mike Braun, the Republican governor who helped muscle through the changes over the objections of the Indiana hospital industry, said the healthcare system is too broken to leave alone.

“Government has to intervene, because healthcare is run like an unregulated utility,” he told 吃瓜不打烊.

The five Indiana nonprofit hospital systems involved are Ascension St. Vincent, Community Health Network, Franciscan Health, Indiana University Health, and Parkview Health.

The price cap will be based on the statewide average for inpatient and outpatient hospital prices. Indiana will use Medicare as a yardstick by which to measure commercial prices, a comparison commonly used by researchers. This will show how much higher commercial prices are than the government program’s.

By June 30, the state is expected to issue a report showing average hospital prices in the state and where individual hospitals fall on the spectrum.

For years, have found that Indiana hospital prices are some of the highest in the nation.

The , produced in November, found three of the five nonprofit hospital systems exceeded a voluntary benchmark when excluding practitioner services, such as doctor fees.

However, all five hospital systems were below the voluntary benchmark when doctor services were wrapped into the overall score. This finding illustrates how prices for doctor visits may obscure overall hospital prices by bringing down the average, researchers and lobbyists for employers told 吃瓜不打烊.

Rand researchers found that while Indiana is home to some of the highest-paid hospitals, its doctors are among the lowest paid in the nation. That’s partly because the doctors don’t have the same negotiating leverage as the handful of large health systems.

This disparity has sparked a debate over which prices should be used to calculate the upcoming cap. Including doctor services would likely allow hospitals to keep prices high because they would be offset by low doctor prices, said Whaley, who has co-authored Rand’s pricing reports. This would let hospitals off the hook from doing the work to “move the needle” on lowering prices, he said.

Indiana Hospital Association President Scott Tittle said it’s unfair to exclude doctor services.

Hospitals often acquire physician practices to help drive admissions, . But Tittle said it also helps keep doctor offices open and preserves access for residents. That comes at a cost, he said.

“We know it is absolutely part of the complete cost of care,” Tittle said.

Despite the hospital lobby’s efforts, Tittle said, the state will exclude doctor services from the cap.

Regardless, Tittle said it’s unnecessary to put price caps in state law. “Hospitals can and have done the hard work to reduce their pricing,” he said.

For employers, rising healthcare costs are a headache. They’re unpredictable and make it difficult to budget each year.

Doug Bawel, chairman of Jasper Holdings, an automotive parts company based in Jasper, Indiana, has tried various strategies to wrestle high healthcare costs. For his workers, he’s purchased diabetes drugs from New Zealand and housed on-site health clinics.

Under the law enacted last year, Indiana hospitals must offer direct contracts to employers for a variety of procedures priced at or below 260% of what Medicare pays for hospital care. That’s setting a ceiling at slightly more than 2.5 times what Medicare pays.

Bawel expects the state’s price controls on direct deals to significantly strengthen his negotiating leverage with hospitals. He belongs to a consortium of southern Indiana employers that buy services directly from area hospitals.

This move represents a departure from the status quo for the business lobby. Ashton Eller, a healthcare lobbyist for the Indiana Manufacturers Association, said the group generally opposes government price controls. But it believes this is a step in the right direction, he said.

“Is this a silver bullet that will bring down prices overnight? We don’t pretend it is,” he said.

No matter what happens in the Hoosier State, Indiana’s experiment with price controls has attracted attention.

“As employers and states are dealing with double-digit premium increases, there is tremendous interest in healthcare affordability, and what happens in Indiana is being closely watched by many states and Washington, D.C.,” Whaley said.

This article first appeared on 吃瓜不打烊 and is republished here under a .

The Department of Health and Human Services is seeking data from little-known state systems that allow hospitals and clinics to exchange detailed, identifiable patient information, 吃瓜不打烊 has learned.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A System To Monitor Chronic Disease

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

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

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

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

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

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

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

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

A Kennedy Partner in Nebraska

At least one state has been cooperative.

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

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

“They’re looking at the data differently and providing some insights back to the CDC,” Bland told 吃瓜不打烊.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

吃瓜不打烊 data reporter Maia Rosenfeld contributed to this article.

This article first appeared on 吃瓜不打烊 and is republished here under a .

The 59-year-old retired teacher, who recently moved from Ohio to Michigan, now pays $341 a month for a pair of plans, one that covers routine and urgent care and another that pays fixed amounts for hospital stays. Neither meets federal standards for comprehensive coverage.

Though she practices yoga and is healthy, Miller said she still feels “vulnerable.” If she lands in the hospital, her plan pays a flat $2,000, a fraction of the of an average hospital stay.

“I don’t gamble. But I may as well,” she said. “This is gambling.”

Congress’ decision late last year not to extend enhanced marketplace tax credits has boosted the appeal of alternatives to comprehensive insurance 鈥� plans like Miller’s, which have lower premiums but don’t meet ACA standards for coverage or consumer protections. Unlike plans sold on the exchanges, these options 鈥� some sold by major insurers, others by small companies or nonprofits 鈥� can deny claims with few or no legal rights for consumers to appeal. The plans are not required to cover “essential health benefits,” such as preventive care, and can impose annual or lifetime caps on benefits.

There is debate over whether these options help or harm patients. Consumer advocates dismiss them as “junk insurance,” while proponents say restricting alternatives to pricey marketplace plans risks driving up the number of uninsured. Some states, including Kansas and Florida, and the federal government itself have eased regulations on such plans or created incentives to join them, while other states, including California and Massachusetts, have tried to deter enrollment in alternative insurance. Those regulatory guardrails, however, are now being stress-tested as premiums blow out household budgets.

Alternative insurance takes many forms, including short-term policies, which were designed to bridge temporary gaps in coverage and often exclude preexisting conditions, and fixed-indemnity plans, which pay a flat rate per service regardless of how high costs go and are intended for supplemental use. Arrangements in which people pool their money to cover one another’s bills, including faith-based “healthcare sharing ministries,” also provide a cheaper alternative to the marketplace options. Because they are not considered insurance under federal or state law, they are not legally bound to pay for even .

Enrollment data for alternative plans is mostly confidential, but several indicators point to shifts in the market. Recent estimates suggest marketplace enrollment from 2025, and a of people on the exchanges last year found that 5% switched to private, nonmarketplace individual coverage, including plans that don’t comply with the ACA. Covered California, the state’s marketplace, plans to survey former enrollees to find out where they went.

Insurance industry insiders also report that, amid the expiration of subsidies, alternative plans are making a marketing push. Colorado insurance broker Samantha Albritton said that before ACA open enrollment, she saw more marketing from fixed-indemnity plans than in previous years. One healthcare sharing plan, Zion HealthShare, had more than 75,000 members in February 鈥� a 50% increase since last June, it said in a statement.

Critics of these alternative plans say the major issues occur when people use them as primary insurance and don’t realize the coverage is inadequate until they need it most. “Humans have bodies that can fail them,” said Amy Killelea, an assistant research professor at Georgetown University’s Center on Health Insurance Reforms.

This article first appeared on 吃瓜不打烊 and is republished here under a .

North Carolina, in late April, became the latest member of a growing group of Republican-led states to require their public health agencies to flag recipients of Medicaid to the U.S. Department of Homeland Security if their legal status is in question.

It’s a trend health policy researchers expect to spread among GOP-controlled states eager to join Trump in the federal crackdown on Medicaid fraud and illegal immigration. Already, at least four states 鈥� , , , and 鈥� have passed similar laws, and lawmakers in others, such as and , are weighing measures. In those six states, Republicans hold a power trifecta 鈥� both chambers of the legislature and the governor’s office.

“This is an issue that is very much on the political radar right now,” said , a health policy researcher at Harvard Law School.

More than 75 million people , the federal and state-run public health program for people with disabilities and low incomes, or its related Children’s Health Insurance Program, which provides low-cost coverage for people under 19. Immigrants without legal status are ineligible for Medicaid benefits, but a swath of noncitizens qualify, such as green-card holders, asylees, and refugees. A quarter of children in the U.S., most of them citizens, live with an immigrant.

Yet the new reporting laws add a layer of risk for immigrants seeking healthcare in the U.S., where the the use of to help identify and deport people.

Some of the state laws apply only to health agencies, such as in North Carolina. But the bill headed to Tennessee Gov. Bill Lee’s desk , requiring all state agencies to report people suspected of being in the U.S. without legal status. All seven state measures go beyond what’s federally required, which is to cooperate with enforcement officers by providing personal information of recipients when asked.

In Louisiana, families with mixed immigration statuses have reported that the state’s new law, enacted last year, for their kids with U.S. citizenship.

“I expect this law will lead to more families asking whether it is safe to seek healthcare, whether information can be shared with immigration authorities, and whether enrolling a child or seeking treatment could expose them to enforcement consequences,” said , a North Carolina immigration attorney.

North Carolina Republican lawmakers inserted their mandate for the state’s health department as part of a in Medicaid funds, which the legislature cut when it failed to pass a budget last year.

Starting in October, state employees will ask non-U.S. citizens receiving Medicaid for proof of their immigration standing and report those without “satisfactory” legal status to federal authorities. “This bill is designed not only to fund our critical needs today, but to begin looking at fraud, abuse issues we know exist within the system,” Republican state Rep. Donny Lambeth said during a House debate on the bill.

Immigrants than people born in the U.S., according to an analysis by the Cato Institute, a libertarian think tank, which also found noncitizens are much less likely to than citizens. State health agencies are already required to verify whether applicants’ immigration statuses .

Several Republican leaders responsible for the bill did not respond to requests for comment. North Carolina Department of Health and Human Services spokesperson Hannah Jones said the agency is still trying to understand the impact of the new law.

, about half of adults who “likely” lack legal status said someone in their family has avoided seeking medical care because they were concerned their information could draw the attention of immigration enforcement.

, a North Carolina discrimination attorney, said immigrants “in process,” or those waiting for legal authorization, generally already fear using government assistance for themselves.

“What I’ve learned from handling thousands of cases over the years is that most of the individuals who are in process pay for their own medical treatment out-of-pocket,” Rosa said.

Such policies essentially force children who are U.S. citizens to go without health coverage or hospital care, said , a researcher at Georgetown University’s Center for Children and Families.

“When you do policies that target an immigrant, you may think that you are just targeting this one person in the family, but it’s a really imprecise bomb that takes out the whole household,” Cuello said.

The use of states’ public health agencies to find immigrants who lack legal status is not the only strategy states have deployed. Some have passed laws looking to hospitals to collect and report such information. A 2023 Florida law that requires hospital staff to ask about patients’ immigration status has made noncitizens hesitant to seek care, separated families, and caused psychological distress, by the University of South Florida. Texas Gov. Greg Abbott, a Republican, issued an executive order similar to Florida’s law in 2024.

Democratic states have pushed back against Trump administration policies that mine private medical information to target immigrants, with 21 signing on to a filed last year that attempts to prevent DHS from . recipients’ identities could be shared, but medical information could not. Litigation is ongoing.

DHS did not respond to a request for comment on the record.

After he signed the bill into law, North Carolina’s Democratic governor, Josh Stein, urging Republican lawmakers to protect Medicaid coverage for nearly 27,000 pregnant women and children who are lawfully present in the country. He did not respond to questions about the provision that requires the state to report immigrants without legal status.

Polanco-Galdamez said such laws have further eroded trust in healthcare systems among underserved families.

“At the end of the day, public health systems function best when people feel safe seeking medical care,” Polanco-Galdamez said. “Policies that blur the line between healthcare access and immigration enforcement risk pushing vulnerable families further into the shadows.”

This article first appeared on 吃瓜不打烊 and is republished here under a .

“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 鈥� money that could help rural hospitals and clinics pay for patient care 鈥� 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 鈥� such as electronic health records at different clinics and hospitals that can talk to one another 鈥� 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.

吃瓜不打烊 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 鈥� part of the GOP’s One Big Beautiful Bill Act, signed last July by President Donald Trump 鈥� 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 鈥� not lawmakers 鈥� 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 鈥� 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 鈥� a nutritional supplement used in neonatal intensive care units 鈥� 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 鈥� whether they know it or not 鈥� 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 吃瓜不打烊 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 鈥� 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 鈥� an investigator in the study 鈥� .

“We had another SAE” 鈥� serious adverse event 鈥� “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 吃瓜不打烊 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 鈥楬ospital 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 鈥� later used in the Whitfield trial 鈥� 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 吃瓜不打烊, 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 鈥� and 鈥榯aking 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 鈥� 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.

“鈥�,” 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” 鈥� health care providers, apparently 鈥� “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 吃瓜不打烊.

“Thus, references in documents about wanting to 鈥榳in’ or 鈥榦wn’ 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 鈥� 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 鈥� 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 鈥� 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 鈥� illnesses or deaths potentially related to the products 鈥� 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.

鈥楢t 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 鈥榓t 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 鈥榠nfant formula seems responsible for developing NEC,’” Das wrote.

“Instead, we thought if we could state as 鈥榠nfant 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 吃瓜不打烊 sent by email.

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

鈥業n 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 鈥榮tatistically 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 鈥� a co-author of the paper and Mead Johnson’s director of medical affairs for North America when the study was completed 鈥� 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.

鈥業t 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, 吃瓜不打烊 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.

吃瓜不打烊 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 吃瓜不打烊 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 吃瓜不打烊 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 鈥� in other words, the Mead Johnson fortifier 鈥� 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” 鈥� 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 鈥� 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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