Each year, Amgen, which makes the drug, called , sent the coupon card worth thousands of dollars, and that counted toward Gruber’s health insurance deductible and out-of-pocket maximum.

Using the card, Gruber usually met that maximum by February, leaving his health insurance to fully cover his in-network medical costs and reducing his cost for the drug to $0 for the rest of the year.

But this year, his new health insurer, , pocketed the coupon card and required Gruber to pay for the drug until he satisfied the cost-sharing requirements on his own.

If Oscar Health had applied Amgen’s coupon toward Gruber’s cost sharing, he would have been on the hook for about $3,000 in covered services. Without it, he had to use his savings to meet the plan’s $10,600 out-of-pocket maximum.

“The real insult here is that they’re taking the money that’s intended to help you,” said Gruber, who had planned to buy a home next year with his savings. “I feel desperate, pressed against the wall, and squeezed.”

Oscar Health is one of many commercial health insurers that use what are often called copay accumulator programs to keep funds that are meant to defray patients’ out-of-pocket costs for expensive specialty drugs. Over the past decade, more insurers have to reduce their prescription drug costs, according to Avalere Health, a consulting company.

Patients who rely on copay assistance from drugmakers are typically heavy users of healthcare for whom delays in treatment or worsening conditions can lead to higher costs, according to patient advocates.

, Florida market president for Oscar Health, did not comment on the specifics of Gruber’s case. He said the company uses copay accumulators to manage rising medical and prescription costs and “to keep monthly premiums as low as possible.”

Drugmakers argue that insurers and pharmacy benefit managers use copay accumulators and other strategies to delay or deny care and steer patients toward medicines that insurers prefer instead. Insurers counter that coupon cards and other patient financial assistance from drug manufacturers drive up premiums and encourage patients to use higher-priced, brand-name drugs instead of less-expensive generics.

Meanwhile, patient advocates say it’s difficult for consumers to find out if their plan uses a copay accumulator or to understand how they work. Not only do the programs make medications unaffordable for consumers, critics argue, but they allow insurers to double-dip.

“They’re collecting the money twice and they’re hurting patients,” said , executive director of the HIV+Hepatitis Policy Institute, a patient advocacy group.

“Why does it make a difference to Oscar if they get the money from a drug company or, you know, his mother or him?” he said of Gruber’s experience. “They’re still getting the money.”

Controlling Costs or Harming Patients?

Not all insurance types use copay accumulators. Medicare and Medicaid prohibit copay assistance because federal anti-kickback laws forbid drug manufacturers from offering financial incentives to influence patients’ choices. And the Internal Revenue Service prohibits such help for high-deductible plans with health savings accounts. But individual and commercial group plans can use them.

Regulation of copay accumulator programs has fallen largely to states, which oversee individual and small-group plans sold on the Affordable Care Act marketplace.

For 2026, of ACA marketplace plans have such a program, according to a review from The AIDS Institute, a nonprofit group that opposes the programs. Of the 16 insurers that sell plans on the marketplace in Florida, 10 use copay accumulator programs, the review found.

Patients who take brand-name specialty drugs for conditions such as autoimmune disorders, multiple sclerosis, diabetes, HIV, and cancer are most likely to encounter these programs. Health insurers say that making patients share the costs for specialty drugs encourages them to choose value over brand.

But Gruber doesn’t have a choice because there is no medically equivalent generic for Enbrel. Gruber’s livelihood as a trainer depends on his athleticism. The weekly injections, which he has to take for the rest of his life, prevent his joints from getting stiff. When he was diagnosed in 2010, Gruber said, he couldn’t shake hands or lift his knee to get into bed. Without treatment, he said, “I ache from my neck down to my toes.”

If manufacturers priced their drugs affordably, patients like Gruber wouldn’t need financial assistance, said , a senior vice president for AHIP, a trade association representing insurers.

“Drugmakers offer short-term ‘discounts’ to justify overcharging Americans in the long term, driving up healthcare costs for everyone,” he said in a statement. “Research shows limiting copay coupons can reduce premiums and lower consumers’ out-of-pocket costs.”

Sarah Ryan, a spokesperson for Pharmaceutical Research and Manufacturers of America, a trade association for the pharmaceutical industry, said copay assistance helps patients access medications free of charge or at reduced cost.

“Health insurance is supposed to protect patients,” Ryan said, adding that insurers and pharmacy benefit managers that refuse to count copay assistance toward cost sharing are “leaving patients facing unexpected costs and disrupting their care.”

Insurance companies already have tools to control costs without keeping financial assistance intended for patients, said , deputy executive director for The AIDS Institute.

Insurers choose what drugs to cover, whether they are medically necessary, and if a patient must try a cheaper alternative first.

“They are the ones making the decisions,” Klein said. “Now the individual is left trying to figure out how they’re going to pay for it.”

Consumers Stuck in the Middle

Before moving to Florida in 2024, Gruber said, he had bought coverage on the ACA marketplaces in Illinois and Louisiana, which prohibit copay accumulators. Gruber said he hadn’t encountered one until his experience with Oscar Health.

He complained to the office of Florida’s insurance consumer advocate, which informed him that the practice is legal in the state and that Oscar Health had disclosed its use of a copay accumulator program. Page 127 of his 168-page evidence of coverage states, “Third party assistance will not count towards your out-of-pocket maximum or deductible.”

Gruber said he selected his coverage using a tool on that listed all the Florida ACA plans that cover Enbrel. “I always choose the one with the highest deductible to get the lowest premium,” he said, “because I know I’m going to meet it.” His monthly premium is about $315 after subsidies.

Adding to Gruber’s confusion, he said, was that his patient portal with Oscar Health was counting his coupon card at first. He said he met his out-of-pocket maximum in February, and in March Oscar covered all the cost for the medication.

But when he ordered his refill for April, the pharmacy told him that Oscar would cover only $1,000 of the medication’s cost for that month. He would have to pay the remaining $6,700.

Gruber then received a letter from Oscar Health, telling him that an incorrect amount had been applied to his deductible.

“They sent me a letter that basically stated they made a mistake,” he said. “The fact that they’re allowed to sort of change things midstream is also, I think, a little galling.”

He began rationing the injections, taking them every other week instead of weekly. By May, he had dipped into his savings to pay for the drug.

States Step Up While Federal Oversight Stalls

The first state laws banning copay accumulators were adopted in 2019, and since then more states have moved to regulate the programs, said , public policy director for the Alliance for Patient Access, an advocacy group.

“The goal is to build upon that progress at the federal level and to continue to drive this momentum forward,” he said.

Twenty-six states, Washington, D.C., and Puerto Rico have adopted laws banning copay accumulators or prohibiting them for drugs that do not have a generic equivalent. Colorado also prohibits copay accumulators for drugs without a biosimilar. In states that have not banned or restricted the programs, insurance companies decide whether to use them.

But federal regulation of the programs, which would apply to all states, remains at a standstill.

A federal court in 2023 struck down a policy enacted during President Donald Trump’s first term that had permitted insurers to use copay accumulator programs. As a result, the Department of Health and Human Services reverted to that restricts their use to brand-name drugs with a medically appropriate generic equivalent.

After the court ruling, the Biden administration pledged to address copay accumulators in future rulemaking. But HHS has yet to do so, said Schmid, whose group, the HIV+Hepatitis Policy Institute, led a coalition of patient advocacy groups that sued to overturn the rule.

“The Trump administration can stop this once and for all at the national level,” Schmid said. “If they really care about patient affordability, this is something they can do.”

Bipartisan legislation in Congress called the would require financial assistance to count toward deductibles and other out-of-pocket costs on plans regulated by the federal government, including much employer-sponsored coverage.

Schmid said the bill has not gotten “enough traction on the Hill yet.”

Other ways to obtain medication don’t help patients facing copay accumulators either. The president’s , an online platform through which consumers can buy prescription drugs at a discount, requires patients to pay out-of-pocket, and the cost does not count toward their plan’s cost-sharing requirements.

Christopher Krepich, a Centers for Medicare & Medicaid Services spokesperson, said that HHS, along with the departments of Labor and the Treasury, intend to address the issue of whether copay assistance must apply toward health plan cost sharing.

Until then, he wrote, “the Departments do not intend to take any enforcement action against health insurance issuers or group health plans based on their treatment of such manufacturer assistance.”

Outside of government regulation, consumers have few protections or alternatives.

Patients who rely on expensive medications — and who have a choice in their health insurance plan — should research their coverage options and choose wisely so they’re not caught by surprise, Clingham said.

That may mean reading plan benefit explanation packages, contacting their state’s insurance regulator, or calling an insurance company to ask if their plans use copay accumulator programs.

For Gruber, the extra expense means he won’t take a vacation this year. He’s also concerned that the money he was saving for a home will now go to his medication costs instead.

“It’s the first thing I think of when I wake up in the morning,” he said. “If this happens every year, it would be financially devastating.”

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

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“REMOVE ME FROM YOUR LIST!!!! DO NOT EMAIL OR MAIL ME ANY MORE!

“It is because of your animal based pre-term artificial baby food crap that you peddle to hospital NICU’s that my son is dead from NEC.”

The mother was referring to neonatal intensive care units and necrotizing enterocolitis, an often fatal condition in which intestinal tissue can die and allow infection to spread through the body of an infant born prematurely.

In an internal memo, Mead Johnson cited its “extensive quality and safety checks” and concluded there was “not a reasonable possibility” that the formula caused the baby’s death. “No further investigation is needed. This file can be closed,” the memo said.

And with that decision, the company narrowed the chance that the mother’s anguish could draw attention to any danger the formula might pose to other infants.

The mother’s email and the company’s memo assessing it were used as evidence in the court cases and .

When doctors, hospitals, parents, or others alert manufacturers that babies got sick or died while receiving infant formula, what happens next is left largely to manufacturers such as Abbott Laboratories and Mead Johnson Nutrition, giants of the industry.

Mead Johnson’s handling of the mother’s email showed how that can play out.

Under , if a complaint about an infant formula — such as a report of an adverse event — shows a possible health hazard, the company must investigate.

But it doesn’t always have to inform the government agency that oversees the safety of infant formula.

A company must complete an investigation and notify the Food and Drug Administration within only if it finds “a reasonable possibility of a causal relationship between the consumption of an infant formula and an infant’s death.”

If that happened even once over more than a quarter century, the FDA could find no record of it, according to information obtained through public records requests.

‘Never Reported’

Under the Freedom of Information Act, ºÚÁϳԹÏÍø News asked the FDA for all notifications that manufacturers of infant formula sent the agency per the regulatory requirement since Jan. 1, 2020. The agency’s Human Foods Program “did not receive any,” Kimberly Jones, a government information specialist at the FDA, responded in March.

ºÚÁϳԹÏÍø News then asked the FDA to go back decades further — to Jan. 1, 2000. “After a diligent search of our files, we did not locate any responsive records,” Jones wrote on May 5.

The FDA’s search results were consistent with court testimony.

John Wallingford, a paid expert witness for Abbott, testified in a Missouri court in October 2024 that Abbott had under any regulation for preterm infant formula.

that he was not referring to adverse events in clinical trials, which are studies used for research and development and are subject to different procedures. Abbott informed the FDA about adverse events that occurred during a clinical trial, .

Christina Valentine testified in a 2024 deposition that she never sent the FDA a report of death from NEC during her seven years as Mead Johnson’s medical director for North America. In the deposition, used in the Whitfield case, she said she never concluded there was a reasonable possibility that an infant’s death from NEC might have been related to a Mead Johnson product.

As medical director for North America, she was responsible for signing off on those determinations, she testified in the Watson trial.

In the deposition, Valentine said she wasn’t sure whether anyone else at the company sent a death report to the FDA.

In late May and mid-June, Mead Johnson spokesperson Jen O’Neill added to the picture.

“Where there is a physician report that includes an opinion that one of our products caused NEC in a preterm infant, we have treated that as a ‘reasonable possibility of a causal relationship,’ and we submitted an adverse event report to the FDA,” she wrote.

“These physician reports were generally made by plaintiffs’ paid experts, with which we disagree,” she wrote.

O’Neill left unclear whether events Mead Johnson reported to the FDA were raised in lawsuits and, if so, whether the company reported them to the FDA before they surfaced in litigation.

Asked repeatedly when Mead Johnson filed the reports, O’Neill didn’t say.

It’s unclear why the FDA found no record of them.

Nor would O’Neill say whether the company submitted one related to the distraught mother’s September 2016 complaint.

That mother’s name wasn’t publicly disclosed in the court record containing her complaint.

“[P]rior to the current litigation, we received very few reports relating to our products and NEC and even fewer for which our investigation uncovered any evidence supporting a reasonable possibility of a causal relationship,” O’Neill wrote.

Industry personnel have reacted to some complaints with circular reasoning, as shown by court records from the Watson, Whitfield, and cases. Company personnel didn’t think their products caused harm, and they didn’t view new cases as evidence of harm, records show.

‘Reprehensible’ Conduct

About 2,300 newborns died of necrotizing enterocolitis in the United States from 2017 through 2023, the equivalent of almost , according to a ºÚÁϳԹÏÍø News analysis of a for those years. The database doesn’t attempt to explain what caused those babies to develop NEC, and it doesn’t count babies who survived NEC.

A wave of lawsuits has alleged that infant formula made by Abbott or Mead Johnson harmed or killed preterm babies by causing or contributing to cases of NEC. As of late January, 1,760 NEC lawsuits were pending against Abbott, company spokesperson Scott Stoffel said, clarifying a disclosure in a .

This article is based largely on transcripts, deposition videos, and exhibits from three court cases that went to trial in 2024. The lawsuits were filed by parents of babies who suffered or died from NEC.

Abbott and Mead Johnson have denied fault. They, along with various medical authorities including and the , have said that, when nutritional needs can’t be met with human milk, formula is vital.

One of the cases, , led to a against Mead Johnson. , Gill v. Abbott, led to a against Abbott. , Whitfield v. St. Louis Children’s Hospital, et al., led to a jury verdict in favor of Abbott and Mead Johnson, but the judge found errors and misconduct on the part of defense counsel, faulted his own performance, and .

The judge’s ruling in the Whitfield case is on appeal.

On May 5, a Missouri appeals court against Abbott, saying “we find Abbott’s conduct significantly reprehensible.”

“Throughout the trial, the jury heard evidence that Abbott knew its formula posed significant risks to preterm infants weighing under 1500g yet made little effort to mitigate that risk,” the court wrote.

On June 12, an Illinois appeals court against Mead Johnson and sent the case back for a new trial. The trial court risked prejudicing the jury by improperly admitting evidence about Mead Johnson’s finances, including its revenues, profits, and executive compensation, the appeals court said.

In addition, the trial judge gave the jury erroneous instructions, the appeals court ruled. Any negligence on Mead Johnson’s part hinged on a failure to warn, and the company’s duty was not to warn the mother in that case of any danger, as she had claimed, but rather to warn doctors, the appeals court ruled.

In April, after another trial, a jury in Chicago ordered Abbott to pay four plaintiffs a total of $70 million. Abbott is contesting that verdict and the Missouri appeals court’s decision.

In at least four cases, judges have in favor of Abbott — ruling for the company before the lawsuits reached trial.

‘Branding NICU Babies’

Abbott makes Similac products, and Mead Johnson makes the Enfamil line.

The two companies have vied to place their products in neonatal intensive care units, which serve as entry points to hospital contracts and the retail market, ºÚÁϳԹÏÍø News reported in a March article based largely on records from court cases.

For instance, a Mead Johnson slide deck for a 2020 national sales meeting — later used in the Whitfield trial — outlined a plan for “Branding NICU Babies.”

The litigation opened a wider window into the business and regulation of infant formula, including adverse event reports.

“Abbott complies with all applicable FDA regulations on adverse event reporting, including by keeping detailed records of every single complaint/adverse event report Abbott receives and investigating NEC complaints,” Stoffel said in November. “FDA routinely conducts audits that include Abbott’s adverse event investigations and reporting as part of its active regulation of infant nutrition.”

Mead Johnson’s O’Neill echoed that.

“Our adverse event reporting complies with all applicable regulatory requirements,” O’Neill said in a November statement to ºÚÁϳԹÏÍø News. “The FDA audits Mead Johnson on an annual basis and has never identified any issue about our approach to reporting.”

The reports the company filed with the FDA were submitted through the agency’s regional office in Detroit, she said.

It’s unclear whether the FDA looked in Detroit.

FDA rules require manufacturers to send written confirmations in the Washington area that oversees infant formula and other foods.

Asked if the company sent them to that office, O’Neill did not answer.

ºÚÁϳԹÏÍø News requested an interview with Mead Johnson to clarify its statements about how it handled adverse event reports. The company did not grant one.

Plaintiffs have used internal documents from the companies to allege that, in house, people have long recognized a correlation between NEC and the use of preterm formulas made from cow’s milk.

For example, in a 2010 research proposal shown in a deposition used in the Gill case, Abbott scientists wrote that NEC “is the most severe GI complication of prematurity and the use of bovine milk-based fortifiers and formulas are believed to be the primary risk factor.”

A Mead Johnson document used in the Whitfield lawsuit cited “80% necrotizing enterocolitis (NEC) risk reduction when human milk is used in place of formula.”

Abbott that correlation does not equal causation.

“Numerous studies and NEC authorities have made clear that preterm infant formula does not cause NEC; it’s the absence of human milk that increases NEC risk rather than anything harmful in formula,” Abbott spokesperson Stoffel said.

The FDA, the Centers for Disease Control and Prevention, and the National Institutes of Health weighed in with a in October 2024, saying, “There is no conclusive evidence that preterm infant formula causes NEC” and “there is strong evidence that human milk is protective against 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.

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.”

Managing Potential Warnings

Court records from lawsuits shed light on how the manufacturers have managed potential warnings from the field.

Fabrizis Suarez, who was director of medical safety and surveillance at Abbott from 2006 to 2023, said in a January 2024 deposition used in the Gill and Whitfield cases that he knew of no instance in which Abbott notified the FDA that a baby had died of NEC that could have been caused by Abbott’s formula for preterm infants.

There were numerous cases in which healthcare providers told Abbott they believed the formula caused the NEC, but Abbott disagreed every time, Suarez testified.

Abbott tracks and reviews every NEC report it receives and looks for patterns, Suarez testified.

Courtney Colombo, who identified herself in a March 2024 deposition used in the Gill and Whitfield cases as director of postmarketing medical safety and surveillance at Abbott, likewise testified that she knew of no instance in which Abbott reported to any regulatory authority anywhere in the world that one of its preterm infant formulas was possibly related to a death caused by NEC.

Abbott from the FDA, according to testimony from Wallingford, a paid expert witness on regulatory matters who spent 10 years at the FDA. The complaints were in company files FDA inspectors reviewed during annual inspections, he said in the Whitfield case.

Wallingford also testified that inspections are for reporting infant deaths.

Questioning Wallingford in court, plaintiff’s lawyer Kevin Carnie Jr. invoked the cliché about the .

Wallingford declined to comment for this article. Valentine and Colombo did not respond to messages sent via LinkedIn. Valentine and Suarez did not respond to letters mailed to addresses that appeared to be associated with them. A letter to Colombo with signature required, sent to an address apparently associated with her, was returned unopened.

Not Publicly Reported

Adverse event reports can prompt the FDA to take action to protect the public.

For example, in 2011, the parents, caregivers, and healthcare providers not to feed SimplyThick, a thickening gel, to premature infants fitting a particular profile. The product, used to manage swallowing difficulties, might cause NEC, the FDA said.

The FDA first learned about possible problems with SimplyThick from physicians, according to an FDA document that an attorney for Abbott, Sierra Elizabeth, read from during the Whitfield trial.

The stakes for companies and consumers are high.

A finding under the “reasonable possibility” standard could trigger a product recall, said Martin Hahn, a regulatory attorney for Mead Johnson.

The FDA’s handling of adverse event reports for infant formulas — and fortifiers, which are used to nutritionally supplement a mother’s milk when babies are born prematurely — contrasts with its handling of reports about drugs and medical devices.

The FDA posts manufacturers’ adverse event reports on and online in databases available to the public.

But the notifications manufacturers are required to submit about formulas and fortifiers are not publicly reported, said Emily Hilliard, a spokesperson for the Department of Health and Human Services, which includes the FDA.

In addition, the FDA’s reporting requirements for drugs and medical devices are, in key ways, more demanding than those for infant formula.

Device makers not just deaths but also “serious injuries” that the product “may have caused or contributed to.”

Drugmakers are required to report any “” adverse event, “.” That fatal or life-threatening events.

The FDA also maintains a about dietary supplements, foods, and infant formulas, among other products, that includes from consumers and healthcare practitioners.

ºÚÁϳԹÏÍø News searched that database and found one death report that mentioned NEC and a formula made for premature or low-birth-weight babies.

The search turned up seven other reports of infant deaths that mentioned NEC and fortifiers designed for premature or low-birth-weight babies. One of those reports, obtained by ºÚÁϳԹÏÍø News through the Freedom of Information Act, said three preterm babies at the same hospital had NEC and died within a month of one another in 2024.

The FDA cautions that reports are not verified and do not prove causation.

A former attorney for Abbott now leads the FDA.

Before becoming the FDA’s last year and being named acting head of the agency in May, Kyle Diamantas in the and lawsuits, court records show.

Diamantas “complies with all applicable ethics laws and regulations,” said Hilliard, the HHS spokesperson. “That included a specific recusal related to Abbott Laboratories, which concluded in January 2026.”

“During that period, Mr. Diamantas voluntarily recused himself from all matters involving infant formula to avoid any appearance of partiality,” Hilliard said.

‘No Health Hazard’

ºÚÁϳԹÏÍø News asked the FDA a series of questions for this article. The agency left many unanswered.

“Infant formula safety is a top priority of the FDA given the vulnerability of the intended population,” Hilliard said.

ºÚÁϳԹÏÍø News asked Abbott and Mead Johnson for data on all infant death reports the companies received and those they forwarded to the FDA. Neither company provided that information.

Court records provide fragmentary data.

Abbott lawyer Elizabeth said in court that, before Wallingford took the stand as an expert witness, the company gave him from 2005 through 2022 that contained the search term “NEC.”

When Wallingford went through the files, he found that mentioned death and NEC, he testified.

If Similac Special Care products for preterm infants were a problem, and if only 1% of adverse events led to a report, “you would expect to see of complaints,” Wallingford testified.

In 2010, a registered dietitian at a Cincinnati hospital notified Abbott that three babies had died of NEC shortly after starting on an Abbott formula. The dietitian thought there might be a correlation, according to an internal Abbott summary of the complaint shown during Colombo’s deposition. The babies, who were about 17 days old, had no complications other than prematurity, the summary said.

After reviewing the complaint, Abbott’s Colombo wrote, as shown in a deposition video, that she found “NO OTHER REPORTS OF DEATH AND NO TRENDS FOR NEC REPORTED BY OTHER FACILITIES ASSOCIATED WITH THIS STOCK CODE.”

“PREVIOUS COMPLAINT HISTORY INDICATES NO HEALTH HAZARD,” she concluded.

As for Mead Johnson, Valentine “testified that NEC was not one of the top adverse event complaints for Enfamil premature formulas of the 68 received between 2015-2019,” O’Neill, the company spokesperson, told ºÚÁϳԹÏÍø News.

Valentine — who was Mead Johnson Nutrition’s medical director for North America from 2014 to 2021 and parent company Reckitt’s chief medical officer from 2022 to 2023, according to a LinkedIn profile — signed off on the decision to close the 2016 file on the distraught mother’s complaint, according to an exhibit and her deposition testimony played in the Whitfield trial.

When she signed off, Mead Johnson didn’t know which of its products the complaint involved, Valentine said in the deposition.

Asked about it during the Watson trial in February 2024, Valentine testified that, in light of the mother’s request never to contact her again, it wouldn’t have been appropriate to call her back for more information.

Valentine “testified that she believes that the Mead Johnson complaint team appropriately investigated reports of death from NEC based on the information provided,” Mead Johnson’s O’Neill said.

Valentine also testified that the FDA encourages infant formula companies to send in all adverse event reports and that nothing prevented Mead Johnson from doing so.

As reflected in an email thread used in the Watson case, Valentine reacted skeptically in 2019 when a colleague told her a particular hospital wanted to exit its contract with Mead Johnson.

“They had 3 cases of NEC since they started using our formulas. They had 0 cases when they were with Abbott,” the colleague reported.

Valentine agreed to follow up but added: “Sad but please reassure them we are not seeing this with our formula … so no science basis for sure.”

Share your story with us: Do you have experience with necrotizing enterocolitis (NEC) or infant formula that you’d like to share? We’d like to hear from you. Click here to contact the ºÚÁϳԹÏÍø News reporting team.

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Cara Anthony tries to convince her HealthQ co-host Blake Farmer that there are benefits to embracing the caregiver identity when helping an aging parent.

When his father was diagnosed with gallbladder cancer in 2025, William Morrison immediately went into caregiving mode.

“We were in the hospital every day,” he said. “I was really playing the intermediary between the medical staff and our family and kind of helping have those conversations and push for those answers.”

One in 10 Americans say they are a caregiver for a parent 65 or older, . And many people in the sandwich generation — those who have both children and aging parents — start their caregiving journeys like Morrison: stepping up during a medical crisis and becoming a family caregiver essentially overnight.

For other people, taking on the role and identity of a caregiver happens more slowly.

Researchers and experts say the spectrum of caregiving is broader than many people realize and that embracing the caregiver title before there’s a crisis can make a significant difference in this phase of life.

Worry Comes First

Being a caregiver can start long before you go to a doctor appointment with a loved one or move your parents into your house. “Oftentimes what we see out in the world is a very limited definition of who a family caregiver is,” said Denise Brown, a caregiving coach and the founder of Caregiving Years Training Academy in Illinois. Being a caregiver is “not necessarily around defining caregiving by tasks and chores, but about that emotional impact.”

Brown created a framework that defines caregiving as a . She said the first stage — the “expectant caregiver” — begins the moment you start to feel concerned about a loved one.

“ You look into the future and you think, ‘Oh, I think someone’s going to need help in the family,’” Brown said.

When you start to get actively involved in a loved one’s care, that triggers the second stage, what Brown calls the “freshman caregiver”: “You’re learning the lay of the land. You’re learning the language of all the systems that you now manage. The best thing to do in this stage is to get comfortable experimenting.”

Caring for Parents Brings Different Stressors

The kind of care that Morrison provided — responding to an immediate medical crisis — catapulted him into the third stage of caregiving, the “entrenched caregiver.” By the time you hit this point, Brown said, “you can feel completely overwhelmed and swallowed up by the experience.”

that the stress is especially acute for people taking care of parents. The role reversal stresses the relationship: Caregivers who focus solely on children don’t deal with the tension linked to shifting power dynamics and other changes that happen when an adult child starts to care for a parent.

Burnout, defined by physical and psychological fatigue, was higher among caregivers of aging parents than among caregivers caring only for children. And for caregivers in the “sandwich generation,” who were taking care of both children and aging parents, personal burnout scores were even higher.

The Title Makes a Difference

Many people who perform care tasks don’t consider themselves caregivers, , but those who do are more likely to access support services and feel a sense of community with other caregivers.

“Anyone in a caregiving situation deserves support and help,” Brown said.

Embracing the role of caregiver early also allows you to have “really good conversations with people in your life” about their desires — and yours — as you enter this phase, Brown said.

Morrison, whose father died earlier this year, is about to enter his own sandwich generation era: He and his wife are expecting a baby boy in August, and he’s been stepping in to help his mom with housework and administrative tasks.

Morrison and his wife have already had conversations about making time for themselves and each other after their son is born. Morrison also wants to be more intentional with his own health, even if that means just going for walks.

People and Policy

Beyond the emotional strain, caregiving comes with substantial costs. On average, caregivers spend more than $7,000 a year on medical and other expenses to support a loved one, according to in 2021.

Some efforts aim to mitigate the financial burden. In most states, family members can get paid to take care of relatives who qualify for Medicaid. But state Medicaid programs face new pressure from federal cuts, and some states have pulled back funding for home-care programs designed to help residents with disabilities.

Meanwhile, a handful of states for unpaid caregivers. For example, starting in 2027, Connecticut will allow family caregivers who make less than $50,000, or couples who make under $100,000, to apply for a tax credit up to $2,000.

This installment is part of HealthQ’s reporting on caregiving among the sandwich generation. For more, check out the series archive.

Katherine Ruppelt at Nashville Public Radio contributed to this report.

HealthQ is a health series from reporters Cara Anthony and Blake Farmer, approachable guides to an unapproachable healthcare system. It’s a collaboration between Nashville Public Radio and ºÚÁϳԹÏÍø News.

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She spoke at rallies. With other members of the advocacy organization Compassion & Choices, she visited legislators’ offices. In 2024, as the state Assembly was debating the aid in dying bill, she helped unfurl a banner in the chamber gallery that read, “Stop the Suffering.”

Her activism was becoming difficult. Netherland, who is 59 and works for a nonprofit, was diagnosed with breast cancer in 2019. “I did a full year of aggressive treatment,” she said. “Chemotherapy. A mastectomy. Radiation treatment every weekday for five weeks. Six months of two oral medications.”

She recovered and felt well until the cancer returned a few years later. Although metastatic breast cancer is incurable, drugs are keeping her disease at bay for now. Netherland feels fortunate but also fatigued, and she contends with brain fog, gastrointestinal symptoms, and joint pain.

“My energy is really limited,” she said.

As she emailed and called legislators, Netherland feared she might die before the aid in dying bill — first introduced in New York in 2016 — could become law.

‘A Breakthrough Moment’

On June 9, 2025, after the Assembly approved the bill, Netherland was in the state Senate chamber, watching the aye votes mount, and seeing it pass.  an amended version in February; it is scheduled to take effect Aug. 5.

A similar law is  in September in Illinois, which would become the (plus the District of Columbia) where medical aid in dying is legal.

“A breakthrough moment,” said Kevin Díaz, president of Compassion & Choices, which has spearheaded the long campaign for such laws. After almost 30 years — Oregon’s law, the first in the country, was enacted in 1997 — the addition of two populous states means that almost a third of Americans will live in one where medical aid in dying is legally available. “It shows that there’s broad support for this model,” Díaz said.

Polls consistently back that claim. A  last spring found that almost two-thirds of respondents didn’t consider the practice “morally wrong,” either because they thought it was acceptable or not a moral issue. Support crossed many political and religious lines: A narrow majority of Republicans and 76% of Democrats both found “physician-assisted death” (also sometimes called “physician-assisted suicide”) permissible; so did most Catholics, Jews, and nonevangelical white Protestants.

In New York,  that 54% of respondents supported aid in dying, including majorities of men and women, of all age groups, and of city, suburban, and upstate residents. A plurality of Latinos supported it; Black respondents narrowly opposed it.

Passing these laws has grown somewhat easier, said Thaddeus Pope, a bioethicist and professor at Mitchell Hamline School of Law in St. Paul, Minnesota, who tracks such policies. “You can say, ‘We have 10 years in California, 18 years in Washington, and 29 years in Oregon, and nothing bad has happened.’ It becomes more accepted.”

‘You Need A, B, and C’

Yet legalizing medical aid in dying, or MAID, has been and remains a long, contentious process. Catholic leadership and many disability organizations staunchly oppose it. (Pope Leo XIV personally  not to sign the bill.)

The American Medical Association says that “physician-assisted suicide is fundamentally incompatible with the physician’s role as healer” and poses “serious societal risks,” although a number of state medical organizations have opted to remain neutral or, as in New York, to .

The Patients’ Rights Action Fund, through a sister organization, has lawsuits pending or on appeal in California, Delaware, and Colorado, arguing that aid in dying laws discriminate against people with disabilities by steering them toward physician-assisted suicide instead of treatment.

“This is a litigation strategy we’ve developed to ultimately get to the Supreme Court,” said Matt Vallière, the group’s executive director, who declined to say whether it would sue to block the Illinois and New York laws.

Even when aid in dying laws succeed, using them can prove challenging. In every state (except Montana, where it became legal through a court decision, so there is no statute governing eligibility), aid in dying is available only to people with incurable illnesses who are expected to die within six months.

It typically involves oral and written requests to two doctors, with mandated waiting periods between requests. Patients must have the mental capacity to make the decision, which disqualifies those with dementia, and they must ingest the medication without assistance. (An amendment Hochul insisted on adds a psychologist or psychiatrist to the process.)

All but two states require patients to be residents. Oregon and Vermont scrapped their residency requirements  brought by Compassion & Choices. ( a .)

Moreover, any doctor, hospital, or healthcare system can legally decline to provide aid in dying, and religiously affiliated institutions often opt out. Those that participate can add their own requirements.

“The state can say ‘You need A, B, and C,’ and Columbia-Presbyterian can say, ‘We also want D, E, and F,’” said Pope, the Minnesota bioethicist.

Hotly Debated, Seldom Used

Perhaps these restrictions, or a lack of public awareness, help explain why, despite the headlines and fervent debates, the number of people who actually use the law is tiny in every state — usually 1% or fewer of the deaths recorded annually. The support for giving patients this kind of autonomy at the end of life remains widespread, but the desire to personally exercise it apparently is not.

Still, after studies showed that many patients seeking MAID were dying , the trend has been to loosen restrictions. California cut its 15-day waiting period to 48 hours; New Mexico allows physician assistants and advanced-practice nurses to write prescriptions along with doctors.

“Most states have now amended their laws two or three times,” Pope said. “We have liberalized.” Telehealth can also facilitate access to participating doctors.

Compassion & Choices is planning legal challenges to end residency requirements in additional states, Díaz said. It is also considering how to “make inroads in jurisdictions with a much different cultural and political environment,” he added, mentioning Florida and other Southern states.

Medical aid in dying represents a shift in power, Díaz said. “The person who has to bear the burden of the suffering should have the ability to decide when it’s enough,” he added.

Anne Gurnett Bander, 72, a retired research scientist in Carmel, New York, cared for her husband for four years as ALS — the relentlessly disabling neurological disorder also known as Lou Gehrig’s disease — rendered him bedridden and dependent on feeding and breathing tubes. “By the time he died, the only thing he could do was nod his head,” she recalled.

So being diagnosed with ALS herself last year was “my worst possible nightmare,” Gurnett Bander said. She was planning to fly to Switzerland, where the nonprofit organization Dignitas provides medical aid in dying, when she learned about the New York bill and began speaking publicly in support of it, her voice faltering as her illness advanced.

Gurnett Bander and Netherland say they’re not certain they’ll use lethal drugs to end their lives as their symptoms intensify. Not infrequently, patients complete the necessary steps, secure the prescribed medication, decide they don’t need it after all, and die of their diseases. But both women insist that the choice should be theirs.

“It can offer so much peace of mind,” Netherland said. “I thought, ‘People should have this option.’ Now, they will.”

The New Old Age is produced through a partnership with .

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He had rolled his wheelchair to the oven to keep himself warm as he tried to regulate his temperature, she recalled, and was drenched in sweat from an apparent infection.

In that moment, Quette knew that she and her son’s grandmother could no longer meet his medical needs on their own at their Illinois home just outside St. Louis. He had become paralyzed when he was shot in 2023, and, despite their efforts, they struggled to take care of him. But she never imagined that her quick call for help that day would turn into a months-long hospital stay for her son — even after he was well enough to be discharged.

She said their family had been begging hospitals for a home health aide to help care for his wounds, only to be accused of neglect. “They were like, ‘Well, y’all almost killed him,’” she recalled officials telling her. ºÚÁϳԹÏÍø News agreed to use only her nickname to protect the safety of her son.

“I had to give up. I just couldn’t take care of him anymore,” Quette said. “It was just a lot on me. It was something that I was not ready for.”

Once his immediate medical needs were addressed, her son didn’t leave the hospital. His grandmother, who was his legal guardian, had died and the teen ultimately became a ward of the state. He continued living inside a St. Louis children’s hospital for what’s commonly called a “social stay.” Also referred to as hospital boarding or delayed discharge, the practice of keeping children in hospitals “beyond medical necessity” has become a persistent problem — flummoxing officials in Missouri, Illinois, Minnesota, Georgia, and beyond — when there’s no safe place to care for the child.

Finding homes for foster kids is difficult across the country. They have spent nights in casino hotels in Nevada and offices in Georgia . This problem even has a name: “hoteling.” But add medical needs to the mix, and hospitals become the holding station for some kids.

Many children stuck in this limbo have mental health or behavioral issues, while some have chronic physical conditions or disabilities for which they need technology, equipment, or other assistance.

“It’s definitely a national problem,” said , a pediatrician at Boston Children’s Hospital and the chair of the American Academy of Pediatrics’ . “Every state has different options in terms of where kids can go post-acute care. But in general, there’s many of our kids with medical complexity who just don’t have access to the appropriate home nursing to bring them home safely.”

It’s gotten so bad that Missouri lawmakers have repeatedly to try to significantly reduce the number of hospital boarding days each year and eventually end the practice altogether.

Quette said her son was housed in a private hospital room while he waited for the state to find a place for him elsewhere. Other children spend weeks, months, and, in extreme cases, years in acute care hospitals while grown-ups scramble to find them safe places to go, according to Lynn Rasnick, a nurse and vice president at the Missouri Hospital Association. She said some children sleep on emergency room stretchers. They sit in windowless rooms. They miss school. And they’re exposed to all the trauma that comes through the hospital on any given day.

To keep young boarders safe, some hospitals hire “sitters” for kids with no place to go, while other institutions have passed along chaperoning duties to hospital workers.

But all that comes at a cost beyond the toll it takes on kids and families. When a child no longer needs hospital-level care, insurers don’t have to pay for their stay. Some hospitals eat the cost. Others ask the state for reimbursement if the child who is waiting for placement is in state custody.

According to the Missouri Hospital Association, the state’s Department of Social Services reimbursed $16.3 million to 19 hospitals for 9,943 boarding days last year — more than $1,600 a night. But association spokesperson Dave Dillon said that’s a substantial undercount of the problem and that hospitals often aren’t reimbursed for housing children.

One study found that boarding a child with a complex medical condition in Minnesota a day in 2017. And a 2023 Minnesota Hospital Association survey of about 100 hospitals of “unnecessary” patient stays for adults and kids at $487 million for 195,000 days of care.

Lin, the Boston-based pediatrician, said a shortage of home healthcare workers forces some families to keep their children in the hospital, even though they’re well enough to go home.

State Medicaid programs face new pressure from federal cuts in congressional Republicans’ One Big Beautiful Bill Act. Medicaid, which provides healthcare coverage for those with low incomes or disabilities, is expected to lose nearly $1 trillion in federal funding by 2034, so some states are already threatening to scale back optional home-care programs.

Quette, a single mom who once worked as a paid caregiver and now works as a custodian, said her family repeatedly asked hospitals for a home health aide but was told her son’s insurance wouldn’t cover it. Her son’s paternal grandmother, who had helped raise him, was in a wheelchair herself at that point. Quette’s son needed his bandages changed regularly, and she had to turn him around in his bed every four hours.

“I had to wake up out of my sleep to rotate him,” Quette said. “And I couldn’t do it. I was oversleeping.”

Parents across the country face similar challenges. Last year, Georgia officials said 500 children had been and turned over to the state’s Division of Family & Children Services due to complex behavioral or psychiatric needs.

In Colorado, a hospital worker emailed a state representative for help after an autistic 13-year-old boy at UCHealth Longs Peak Hospital in Longmont. After his father left him there, officials told hospital workers that it would take months to find a safe place for the boy to go.

Last fiscal year, the Illinois Department of Children and Family Services logged 304 cases of youth in psychiatric hospitals beyond medical necessity, according to an released by the state. About 43% of those cases were among patients ages 13 to 16.

This year, Missouri state Sen. , a Republican, introduced a bill that would require his state to move faster and pay for care when a child is stuck in a hospital. Similar bills died in committee and . This year, Burger’s bill remained stuck in committee when the legislative session ended May 15.

According to a attached to the bill, paying for hospital boarding could cost more than $148 million a year in a state that already to fund its upcoming $50.7 billion budget.

Over 18 months, the Mercy hospital system, one of the largest in Missouri, logged 2,687 boarding days, testified Patty Morrow, a Mercy vice president, in a March hearing on the bill. That included adults who also were stuck without a safe place to go.

“That was never really ever the intended purpose of a hospital,” Morrow told ºÚÁϳԹÏÍø News. “The current state cannot be the ongoing solution.”

The bill requires the juvenile court system to ensure that children are placed in “an appropriate setting,” which would entail involvement of social workers and other public servants.

Rasnick, with the Missouri Hospital Association, also spelled out the issue during the hearing. “You can’t just discharge a 9-year-old into the street,” she told lawmakers.

Quette’s son is still in state custody but no longer hospitalized. Illinois officials declined to let the teen share his story with ºÚÁϳԹÏÍø News.

His mother said she is still holding on to his brace, bandages, ointment, and other medical supplies in her home. “That’s all I have,” Quette said. “That’s the stuff I will never give away.”

This piece was supported by a grant from the Association of Health Care Journalists, with funding from The Joyce Foundation.

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Recently divorced, the former stay-at-home mother had started working again in her mid-40s, taking a human resources job that paid $41,000 a year. Then, despite having insurance, she was hit with more than $8,000 in medical bills.

“I had my car and a basket of clothes,” Roberts recalled. “Medical bills were not something I could have afforded.”

Roberts sought financial assistance from CentraCare, the St. Cloud-based health system that treated her. It’s a nonprofit charity that receives millions of dollars in federal, state, and local tax breaks. In exchange, it’s obliged to offer charity care to patients who can’t afford their medical bills. But Roberts said CentraCare told her she made too much to qualify.

Roberts instead scrimped on groceries and Christmas gifts for her kids and paid off more than $6,000 over two years. Then CentraCare sued her last year because she hadn’t paid off all the debt.

“They’re supposed to be a nonprofit,” Roberts said. “It’s like, ‘Come on!’”

CentraCare earmarks a tiny fraction of its budget for helping patients with medical bills they can’t pay, but it’s not alone, a Minnesota Star Tribune-ºÚÁϳԹÏÍø News investigation found.

Minnesota’s hospitals and health systems are among the least charitable in the country, the investigation found, providing less financial aid as a percentage of their operating budgets on average than hospitals in almost every other state, including Illinois, Iowa, Nevada, and Texas.

The investigation drew on a detailed review of every hospital charity care program in the state, an analysis of five years of hospital financial data, and dozens of interviews with patients, hospital executives, and state officials.

Nationally, hospitals spend an average of about 2.4% of their operating budgets on charity care, according to federal hospital data compiled by Hossein Zare, a researcher at Johns Hopkins University. Minnesota hospitals spend about a third of that, on average.

Some spend considerably less. Of Minnesota’s 123 general hospitals, 62 devoted less than 0.5% of their operating budgets to charity care from 2020 through 2024, the Star Tribune-ºÚÁϳԹÏÍø News investigation found.

“The system is not working,” said Erin Hartung, director of legal services at Cancer Legal Care, a Minnesota nonprofit that helps patients with medical debt and other financial challenges. “And the burden is falling hardest on the people who are least able to bear it.”

CentraCare’s flagship St. Cloud Hospital spent less than 0.25%, according to the analysis. That works out to $25 in patient aid for every $10,000 spent on hospital operations.

Charity care will become even more vital in coming years as Minnesotans lose health coverage or can’t afford rising copays and deductibles. The state’s uninsured rate rose sharply last year, since 2017, and it’s expected to increase further as budget cuts pushed by President Donald Trump force states to pare Medicaid and other safety net programs. Charity care is also critical to many people with health insurance who can’t afford their bills.

Hospital officials say it’s unfair to expect them to solve this affordability problem when many of their facilities are financially strained. “No amount of charity care from hospitals will ever fully meet the needs of uninsured or underinsured Minnesotans. The need is simply too great,” Minnesota Hospital Association spokesperson Tim Nelson said in a statement.

But state Attorney General Keith Ellison said hospitals have a duty to boost charitable help for all needy patients in exchange for the tax breaks they receive.

“There is a benefit you get from being a nonprofit hospital in the state of Minnesota,” he said. “But do the people get the benefit?”

Several small Minnesota hospitals give financial aid to fewer than two dozen patients a year. Mahnomen Health Center, which recently converted to a rural emergency center, didn’t provide any charity care in eight years, despite serving one of Minnesota’s . Other hospitals serving large low-income populations were among those providing the least charity care, the analysis found.

Several factors help explain why Minnesota hospitals provide so little financial aid. For one, job-based insurance and an expanded Medicaid program offer broad coverage. Hospitals in states with less government assistance and more uninsured people typically spend more on charity care.

But Minnesota patients also face significant barriers accessing financial aid at many hospitals, including inconsistent eligibility standards and extensive applications, the Star Tribune-ºÚÁϳԹÏÍø News investigation found.

To qualify at many hospitals, patients must submit detailed personal information, including bank statements, retirement accounts, mortgage documents, and estimates of other assets such as cars, homes, or livestock.

And because Minnesota has not standardized the criteria for charity care, patients might receive aid at one hospital but not another. The investigation found that some hospitals give free care to patients with an annual household income of $47,000, while others cap it at about $15,000.

Had Roberts driven 30 miles east to Princeton or 35 miles north to Little Falls, she would have found medical providers with more generous financial aid policies than CentraCare. But she didn’t know to look.

Roberts, now 49, has remarried and lives in a split-level home in St. Cloud decorated with inspirational plaques such as “Faith, Family, Friends.” CentraCare recently dropped the lawsuit against her, but only after she took out a loan against her retirement plan to pay off the medical debt. “It just feels very unfair,” she said.

‘We Have To Defend Being Paid’

CentraCare spokesperson Karna Fronden said medical privacy laws prevented her from discussing Roberts’ case. She also declined interview requests about the health system’s charity care spending.

In a statement, Fronden said CentraCare provides assistance in addition to charity care, such as helping enroll patients in insurance. “This helps provide broader, longer-term protection for patients,” she said.

Other hospital leaders said they serve their communities in ways besides forgiving medical bills, including training doctors and nurses and preserving money-losing services such as obstetrics and mental health care.

“Rural hospitals like ours are often portrayed as though we are sitting on piles of cash and simply choosing not to spend it on charity care. That is far from the reality,” said Robert Pastor, chief executive of Rainy Lake Medical Center in International Falls.

“We are the second- or third-largest employer in town, running on razor-thin margins while navigating escalating labor and supply costs and routine underpayment by public programs,” Pastor said. “Meanwhile, many health insurers post billions in profits.”

Hospitals typically are paid less for care provided to Medicare and Medicaid patients. More than 80% of Rainy Lake’s patients are on one of those government programs.

Minnesota hospitals collectively write off about $200 million of what’s deemed bad debt every year after trying unsuccessfully to collect unpaid bills from patients through calls, letters, and even lawsuits. By comparison, they devote about $163 million annually to charity care, state figures show. In 2024, hospitals collectively posted $2.4 billion in net income.

“I feel like I’m put in the position, being the hospital, where we have to defend being paid,” said Patti Banks, the head of Ely-Bloomenson Community Hospital and a senior Minnesota Hospital Association board member.

Some hospitals face intense financial pressures. Thirty-one have lost money on operations in four of the past eight years. HCMC in Minneapolis — the state’s largest safety net hospital, which provides the most charity care — is losing so much money that, without additional taxpayer support, .

But larger health systems such as Mayo Clinic, Essentia Health, and Sanford Health have remained financially sound. And the operating margins at most CentraCare hospitals exceeded 10% in 2024, state data shows.

Medical Debt’s High Toll

Nationwide, health care debt — much of it from hospitals — burdens an estimated 100 million people, increasing their stress and even leading to premature deaths, .

Abby Kelley-Hands, a special education coordinator in St. Paul, has a rare immune condition that causes frequent, severe allergic reactions. Her illness can be controlled only with a costly drug, which a Mayo Clinic doctor prescribed.

When Kelley-Hands briefly lost health coverage in 2021 in an insurance mix-up, she was hit with more than $20,000 in bills. And although she and her husband earned less than $100,000 a year, Kelley-Hands said Mayo denied her financial assistance because she earned too much.

“I was in tears,” Kelley-Hands said. “It was so scary and so hard. And it causes all of this additional stress, which then makes you sicker and less able to even figure things out.”

Kelley-Hands and her husband sold a car and agreed to a payment plan before Mayo would resume her treatment, she said. Her husband now bikes 5 miles to work. They have no dishwasher. And she and her husband took a honeymoon only last fall, seven years after their wedding. “We live very simply,” she said.

Mayo spokesperson Kristyn Jacobson declined to discuss Kelley-Hands’ case.

In 2024, state lawmakers from denying care to patients with outstanding debt. And in 2025, Attorney General Ellison reached an agreement with Mayo to overhaul its charity care program after an investigation found the multibillion-dollar institution was systematically discouraging patients from applying.

After the state began investigating Mayo, the system’s , topping 1.5% of operating expenses in 2024.

‘Optimized To Get Payment’

Complying with a 2023 , Minnesota hospitals now post their financial aid policies online, although several, including CCM Health in Montevideo and Northfield Hospital, did so only after being contacted by the Star Tribune or ºÚÁϳԹÏÍø News.

But many hospitals make financial aid more difficult to find than information about paying bills, said Jared Walker, founder of Dollar For, a nonprofit that helps patients nationally apply for charity care.

“Hospitals have optimized to get payment,” he said. “If you want to get on a payment plan, if you want to get on a credit card, it’s so easy.”

Glacial Ridge Health System in Glenwood posts a “Bill Pay” tab at the . But it takes several clicks to find the hospital’s financial assistance plan. The information couldn’t be found on the site searching for “charity care” or “financial assistance.” The public hospital 130 miles northwest of Minneapolis devoted less than 0.7% of its operating budget to charity care from 2019 to 2024.

Patients in interviews frequently said they weren’t told about charity care.

Joe Robling, 29, was treated at St. Francis Regional Medical Center in Shakopee for a broken pelvis and fractured spine after a 2024 motorcycle accident. His mother, Janet, who helped him navigate the bills, said the hospital never informed him about financial aid.

“They didn’t offer any of that,” she said.

Robling, a construction worker in Henderson, was between jobs and uninsured. “He had zippo,” Janet Robling said. “What he had in reserves were all depleted.”

The Allina Health-affiliated hospital billed him more than $19,000, the Roblings said.

An internet ad connected the family to Dollar For, which helped Robling qualify for charity care five months after his accident.

Allina spokesperson Jennifer Steingas declined to comment on the case, citing medical privacy restrictions, but said the health system has since reached out to the family.

In another case, M Health Fairview’s University of Minnesota Medical Center didn’t offer financial aid to an unemployed and uninsured man from Idaho while he was hospitalized for two months for psychiatric care and amassed $150,000 in bills.

Attorney Margaret Henehan, who represented the man, said the hospital instead offered him a two-year payment plan at $6,500 a month. “He had no income, which he told Fairview,” Henehan said.

The man, who is not identified because of his mental health condition, eventually received charity care after his sister, a doctor, reached out to Henehan for help.

Aimee Jordan, a Fairview spokesperson, said she couldn’t comment on the case because of patient privacy laws, but she said patients who are offered payment plans can always apply for charity care, even after a hospitalization.

A Maze of Standards

State law prohibits hospitals from making “unreasonable” demands of patients when they apply for charity care. But the law sets few specific standards.

The result is a dizzying array of policies, including 11 income thresholds used by Minnesota hospitals to determine whether patients qualify for free care, the Minnesota Star-Tribune-ºÚÁϳԹÏÍø News review found.

HCMC parent company in Minneapolis and Olmsted Medical Center in Rochester offer the highest threshold for free care, at — almost $48,000 a year for an individual.

Sometimes standards vary even between neighboring hospitals. Madelia Health in south-central Minnesota to patients who make less than twice the federal poverty level. About 13 miles away at Mayo’s hospital in St. James, can qualify for aid.

To determine eligibility, some Minnesota hospitals consider only income, but most demand information about patients’ bank accounts as well. More than two-thirds require even more information, including the value of retirement accounts, life insurance policies, property, and vehicles. Madelia’s “may be required to sell recreational vehicles.”

Stringent requirements ensure that limited resources go to patients who need them, said Travis Olsen, chief executive of Hendricks Community Hospital, near the South Dakota border. “We don’t feel it’s fair for someone with lower annual income but yet owns numerous acres of land, debt-free, to be able to qualify for charity care.”

In addition to copies of tax returns, W-2 forms, pay stubs, and bank statements, 53 questions about their finances. These include questions about the make, model, and value of vehicles; the current market value of farm equipment, livestock, and land; and the purchase price and square footage of homes.

Other hospital applications ask patients to detail their monthly spending on food, utilities, and other medical bills.

Olsen said community pressure is more of a deterrent to applying for aid than the application: “People are too proud to pick up an application. We all know each other.”

But Walker at Dollar For said the biggest barrier is complexity. “The drop-off rates are much higher the more questions you ask and the more documentation you have to provide,” he said.

Arleen Mullenax had a cancerous tumor removed from her neck at Mayo in Rochester. Assembling her aid application and following up with the hospital billing department amid her “cancer fog” was almost more than she could take, she said.

“I knew as a former office manager I had to stay on top of it,” she said. “But it was the most daunting thing I had to do as a patient.”

Fixing the System

Ellison and several state lawmakers say Minnesota’s hospitals should make it simpler for patients to access charity care.

They’ve called for, among other things, common eligibility standards and a standard application across hospitals. New York and Maryland already have both.

“Eliminating as many barriers as possible for people is really important,” said state Sen. Liz Boldon, who also said she hopes lawmakers can enact these standards next session.

The Minnesota Hospital Association has opposed standardizing financial assistance, saying hospital boards are in the best position to assess the need for charity care in their communities. “Adding mandates for providers across the state will not close that gap, and will only increase bureaucratic and procedural barriers to patient care,” spokesperson Nelson said.

Ellison also has pushed to require hospitals to use a process that automatically screens and qualifies low-income patients for financial aid without requiring an application.

Some hospital systems, including South Dakota-based Sanford Health, already use software that checks patients’ eligibility based on information such as their credit history, said Nick Olson, the system’s chief financial officer. At Sanford Health’s 10 hospitals in Minnesota, about a quarter of the patients who receive financial aid get it this way, he said.

Nearly all Sanford hospitals devote more than 1% of their operating expenditures to charity care — higher than most hospitals in the state.

Screening software can be costly. Several executives at small Minnesota hospitals said they can’t afford it. But there are other options. In California, Los Angeles County is developing a public system to allow hospitals to quickly assess patients’ eligibility so they don’t have to buy a system themselves.

Other states — including Texas and Nevada — have laws requiring hospitals to provide minimum amounts of charity care.

Back in St. Cloud, Roberts said that when she drives past CentraCare’s $200 million expansion at its Plaza campus in St. Cloud, she wonders why Minnesota hospitals don’t live up to higher standards themselves.

“They have all the money,” she said. “But they can’t grant a good person some grace?”

Minnesota Star Tribune staff writers Bill Lukitsch and Victor Stefanescu contributed to this report.

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The 152-bed hospital, which sits on a sprawling medical campus close to the predominantly Latino and Black neighborhood of Watts, is struggling for financial stability. Its patients are poorer and sicker than average, many of them are uninsured, and three-quarters of MLK’s patient care revenue comes from Medi-Cal, the state’s version of the Medicaid program, which pays low rates. For hospitals statewide, by comparison, less than one-third of patient revenue comes from Medi-Cal.

And MLK Community Healthcare, which comprises the hospital and two nearby clinics, is independent, so it cannot fall back on a larger chain to absorb some of the financial pressure.  

Similar problems plague hospitals around the country, in rural and urban areas. And their financial woes are about to get worse.

The Republican budget measure known as the One Big Beautiful Bill Act, signed into law by President Donald Trump last July, is expected to cut federal Medicaid spending by $911 billion over 10 years. And it could contribute to an increase of in the number of uninsured people, many of whom will go to already crowded emergency rooms to get care they can’t pay for.

The law does include a special fund to boost rural healthcare, totaling $50 billion over five years. But that’s far less than it is expected to cut from rural health spending over the next decade. And the rural health fund does little or nothing to help the numerous that also face serious financial troubles.

MLK, like many other hospitals, is scrambling to secure outside financing to avert serious disruptions of medical services when the brunt of the policies contained in the federal law begins to hit early next year. The hospital’s leadership team projects a revenue hole of $80 million to $100 million annually for the foreseeable future. It would be MLK’s largest budget gap since it opened in 2015.

“Even if we cut services that our community needs — maternity care, behavioral healthcare, diabetes management — it wouldn’t make a significant dent in the gap we’re facing,” said Elaine Batchlor, the CEO of MLK Community Healthcare. ”Many of those same people would still come to us through our emergency department, only they’d be in worse shape and might need more expensive care.”

Across the U.S., hospitals and patient advocates are looking to state lawmakers and local officials to help shore up shaky finances. In California, Assembly member Esmeralda Soria, a Democrat representing Fresno, is to expand a 2023 “distressed hospital loan fund” that allocated nearly $300 million in zero-interest loans to in the state, including $14 million to MLK. The state would pony up another $300 million under Soria’s bill.

At least two other states are weighing similar programs. A would create a $100 million “distressed hospital grant” program. And a funding bill for the Illinois Department of Healthcare and Family Services contains a provision to create for troubled hospitals.

Carmela Coyle, the CEO of the California Hospital Association, said the original $300 million disbursed by the state legislature helped but was not enough.

“This program is focused on those who are standing on the edge of that financial cliff, and it’s intended to give them a little space, brush them a little bit back from the edge,” Coyle said. “But we’ve got many more hospitals that are taking giant leaps toward the edge of that cliff every day.”

Despite the association’s influence, an expansion of the loan program is far from certain, given fiscal constraints that have already induced state leaders to roll back California’s ambitious healthcare agenda, with restrictions on coverage for immigrants and funding cuts for community clinics. Democratic Gov. Gavin Newsom recently warned lawmakers to expect more cuts in his revised May budget — and that’s before the main federal spending reductions kick in.

“This is a very difficult budget environment,” said Kristof Stremikis, director of market analysis and insight at the California Health Care Foundation, a nonprofit that advocates for healthcare improvement. “It is hard to come up with funding for new programs and even existing programs right now.”

Some lawmakers noted skeptically that the initial loans are now on their way to at which is allowed under existing law. Soria’s bill spells out a clearer path to loan forgiveness.

“Are these loans or are these grants? Because they seem to be turning, really, into grants,” Assembly member Pilar Schiavo, a Democrat in Santa Clarita, said during an April 21 hearing on the bill.

Ultimately, it might not be desirable to save struggling institutions by pouring dollars into them, because care is increasingly offered outside of hospitals, Stremikis said.

In the short term, though, the financial health of hospitals that received loans appears to have improved, according to a ºÚÁϳԹÏÍø News analysis of state data. The average operating margin of the 15 loan recipients for which comparable data is available shifted from a loss of 15.4% the year before the program to a gain of 2.3% after the money was disbursed.

It is unclear how much of the improvement can be attributed to the loans. Hospitals also secured other sources of funding, and they adopted efficiencies as a condition for the interest-free money.

MLK reduced the use of high-cost temporary labor by hiring more permanent staff, cut the average length of patient hospital stays to decrease staffing hours, streamlined billing, and negotiated more-favorable contracts with insurers, said Atul Nakhasi, a practicing physician who is also MLK’s vice president of government affairs and community relations. Batchlor said that the loan helped MLK get through a cash flow crunch and that a second loan, if it became available, would be used for the same purpose.

This summer, MLK expects to open a psychiatric assessment unit, where patients in mental distress can be stabilized in an environment replete with plush reclining chairs and “calming” rooms. Hospital executives hope the new unit will provide a significant new source of revenue, while taking pressure off the emergency department.

in Visalia, California, suspended some services, temporarily stopped contributing to employees’ retirement, and briefly froze wages in exchange for a loan of just under $21 million, said the organization’s CEO, Marc Mertz.

Madera Community Hospital got a $57 million loan — the largest disbursement from the state fund — to reopen after being shuttered for more than two years. The hospital reopened early last year, but it has not yet stabilized financially, said Matthew Beehler, the chief strategy officer at American Advanced Management, a privately held company that bought Madera out of bankruptcy.

“You can definitely say the hospital would not have been opened without the distressed hospital loan,” though the company has also invested more than $50 million, Beehler said. He said Madera would hope for another loan if the program were extended.

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More than 80 of his customers who were enrolled in the same Medicare supplemental plan from the insurer Chubb got hit last August with a 45% increase.

“In my 49 years of doing biz as a broker, I’ve never seen a premium increase be effective immediately on everyone, instead of on their policy anniversary,” said Jaggi, whose brokerage scrambled to find more affordable options for clients. The policies pick up deductibles and other costs not covered in traditional Medicare, and without one there is no upper limit on how much a consumer might owe each year.

While 45% was an unusually big jump, Jaggi and other brokers say double-digit premium increases for Medicare supplemental, or Medigap, policies are becoming the norm.

A Chubb spokesperson did not respond to requests for comment on the increase.

More than 12 million people — of those in traditional Medicare — buy a Medigap policy. Others rely on some sort of retiree employer coverage or a different backup. About 13% of people in traditional Medicare don’t have supplemental coverage, according to KFF, meaning they could be vulnerable to large costs if they have a serious illness.

In the supplemental market, following big increases last year, rates appear to be rising again. In early 2026 filings with state insurance commissioners from Aetna, Blue Cross Blue Shield, Cigna, Humana, Mutual of Omaha, and UnitedHealthcare, rate increases for Plan G policies — the most commonly purchased supplement type — ranged from just in the first quarter, according to Nebraska-based consulting firm Telos Actuarial.

“While this is a small dataset across a select number of states, it’s an indication that carriers are looking to correct their premium rates in light of upward pressure on their claims experience,” said Brett Mushett, a consulting actuary with Telos.

Climbing Numbers

Premium rates vary based on the type of coverage chosen, where a beneficiary lives, and their age. For Plan G coverage, beneficiaries paid an in 2023, according to KFF. That amount has likely risen since.

“In some states, like Ohio, Medicare supplements for years would have a 3% to 5% year-over-year increase. Now it’s 10% to 15%,” said Amanda Brewton, owner of Medicare Answers Now, a marketing organization whose clients are sales agents.

In Alaska, Premera Blue Cross raised the premiums on its Plan G policies by nearly 12% for this year, according to rate sheets provided to ºÚÁϳԹÏÍø News by insurance agent Patricia Mack, who said another insurer raised rates by nearly 13%.

For example, a 65-year-old woman who last year would have been charged $172 a month for a Plan G policy would now face a monthly rate of $192, said Mack, who owns Alaska Insurance Benefits in Wasilla.

Premera spokesperson Courtney Wallace said in an email that Medicare makes changes to deductible and copayment rates each year, which affects supplemental plans that cover those increasing amounts.

Wallace also noted that the insurer saw higher medical service use among its members, “which further drove claims costs and ultimately impacted premiums.”

Agents and policy experts blame a range of factors for rising premiums: an increase in the use of medical services by beneficiaries; the aging of the population; increases in labor and medical costs; rules in some states governing Medigap plans; and people’s enrolling in — or getting out of — private Medicare Advantage plans.

“Five years ago, it was exceedingly uncommon to have a carrier with a rate increase of more than 10%. Now it’s very uncommon to see a rate increase below 10%, and it’s not uncommon to see it over 20%,” said Chalen Jackson, vice president for government affairs at Integrity, a Dallas-based company that sells life and health insurance.

Jaggi, who co-owns Jaggi Petry Insurance & Investments in Forsyth, Illinois, along with his daughter, said he eventually found other options for many of those 80-plus clients with the large increase, which came from an insurer that had previously been the lowest-cost option. But it wasn’t easy — and continuing increases are expected.

“These are unbelievable increases,” said Jaggi, who said he is seeing premium hikes exceeding 15% this year across a range of insurers.

Policy experts have outlined possible solutions, including for Congress to cap out-of-pocket costs for Medicare beneficiaries or subsidize the purchase of Medigap coverage.

“Traditional Medicare is the only federal health insurance program without an out-of-pocket cap,” Sen. Ron Wyden (D-Ore.) wrote in an email, adding that the program “needs to be updated and strengthened to protect the Medicare guarantee for American seniors.”

But making changes to Medicare that require congressional approval is unlikely in the current legislative environment, especially because adding an out-of-pocket cap would add costs to the federal budget.

How This Plays Out

People generally qualify for Medicare when they turn 65. Beneficiaries after they initially enroll in the traditional fee-for-service program to purchase a Medigap plan at standard rates without having to answer health-related questions.

Strict rules then kick in around when beneficiaries can enroll in or switch Medigap coverage and options become much more limited, with each one generally involving trade-offs or tough choices.

have what’s known as a “birthday rule,” which requires insurers once a year to allow people enrolled in a Medigap plan to change to different supplemental coverage — usually around their birthdays — without being medically underwritten. Those rules can help consumers, including those with health conditions, to switch.

An additional — Connecticut, Massachusetts, Maine, and New York — require insurers to offer at least one Medigap policy to all applicants either year-round or during an annual enrollment period, depending on the state. Changes are allowed no matter the person’s health.

Another option for those facing high Medigap costs is to leave traditional Medicare and enroll in a private-sector Medicare Advantage plan, which have out-of-pocket caps. But joining one means beneficiaries must generally rely on a set of in-network doctors and hospitals. And if they change their mind and want to go back to traditional Medicare, they have only a 12-month window in which to purchase a Medigap plan without passing health questions. After that, it can be more difficult.

“A lot of people don’t know that if they are in Medicare Advantage for a year, they can get turned down by a Medigap plan or charged really high premiums because of a preexisting condition, which for many people effectively traps them in MA plans,” said , a research associate at the liberal Center for American Progress and co-author of a on the issue.

There are some exceptions. For example, if a Medicare Advantage plan withdraws from a market or leaves the Medicare program, its enrollees can qualify for a supplemental plan without being asked health questions or charged more for having preexisting conditions.

For this year alone, about 2.6 million people when their insurer pulled out of their markets, according to KFF, and more than a million lost coverage for 2025. Many switched to other MA plans, but “somewhere around 440,000 of those people did go to a Medicare supplement policy,” sometimes because there was no other MA plan in their area, said George Dippel, president of Deft Research, a Minneapolis-based market research organization focused on insurance for older people. Deft is part of Integrity, the Dallas company.

Some Medicare experts note that anytime insurers enroll people whose health status they can’t consider — whether because of birthday rules or because their Medicare Advantage plan left the market and thus qualified them for an exemption from medical underwriting — it potentially exposes them to more health care utilization and higher costs, making them more likely to increase premiums across the board to offset the possible financial hit.

Another option mentioned by brokers for people looking to lower their costs is to consider one of the two types of Medigap plans that come with a deductible, which is currently just under $3,000 for a year. Those plans charge far lower monthly premiums than Medigap plans that pick up a much larger portion of annual amounts people must pay toward their Medicare services.

Still, “a lot of people are not comfortable with a $3,000 deductible,” Mack said.

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The lawsuit, settled on confidential terms last year, blamed not only the managers of City Creek Post-Acute and Assisted Living but also the building’s owner, a real estate investment trust, or REIT.

In the year Darby died, City Creek paid CareTrust REIT more than $1 million in rent, while the Sacramento, California, nursing home ran a deficit, court records show.

Federal tax rules ban REITs from running health care facilities, but CareTrust was not an absentee landlord either, according to internal records filed in the case. It chose the nursing home’s management company and required through the lease that the home keep at least 80% of beds occupied. CareTrust granularly tracked how well the home kept to its financial plan, down to the money spent monthly on nurses and food, the records said. And the documents showed that the real estate company kept tabs on government safety inspection findings and Medicare quality ratings.

Both CareTrust and the nursing home operator denied liability for Darby’s death. CareTrust officials said in court papers that it is not involved in day-to-day nursing home decisions or patient care, and that it monitors facilities to ensure nothing jeopardizes rent payments. In a written statement, CareTrust Corporate Counsel Joseph Layne told ºÚÁϳԹÏÍø News: “We are the property owners, not the operators.”

Landlords With Influence

Over the past decade, real estate investment trusts have bought thousands of buildings that house nursing homes, hospitals, assisted living facilities, and medical offices. A ºÚÁϳԹÏÍø News examination of court filings and corporate records shows that these landlords have more influence than the health care facilities publicly acknowledge.

The documents reveal REITs often select the management who oversee the operations and leave them in place even when they are aware of threadbare staffing, floundering governance, repeated safety violations, or other problems that hamper quality of care. A California jury in March awarded $92 million in punitive damages against a former REIT over the death of a 100-year-old resident with dementia who froze to death outside her assisted living facility.

“The REITs are in charge,” said Laraclay Parker, one of the lawyers who represent Darby’s daughter.

Absence of Oversight

Despite their ubiquity, REITs remain invisible to state and federal health regulators. Hospitals and nursing homes are not required to disclose rent payments or landlord identities in the annual reports they submit to Medicare.

Under President Donald Trump, the Centers for Medicare & Medicaid Services a Biden-era requirement that nursing homes . Catherine Howden, a CMS spokesperson, said in a statement that the agency does not regulate facilities based on their tax status or corporate form and instead focuses on the quality of the care they provide.

REITs now of the nation’s senior housing, which includes assisted living, memory care, and independent living, according to an industry analysis. REITs also hold investments in nursing homes. Publicly traded REITs that focus on health care are now worth nearly a quarter of a trillion dollars, according to Nareit, an industry association.

While one research study found REIT investments were associated with , another concluded that after being bought by REITs, nursing homes frequently with less skilled nurses and aides. A concluded that health inspection results were worse after REIT investment.

Researchers also found that investor-owned hospital chains that sold buildings to REITs were or go bankrupt, with Steward Health Care. Often, private equity investors kept the sale proceeds as profits while the hospitals were burdened with new rent costs. “There were no improvements in clinical outcomes,” said Thomas Tsai, an associate professor at the Harvard T.H. Chan School of Public Health.

REITs are required to distribute most of their income and don’t have to pay the 21% federal corporate income tax on it. There is a catch: A REIT that “directly or indirectly operates or manages” a health care facility for five years. Typically, a REIT leases the property to another company that runs the nursing home or assisted living facility and maintains its tax break. Nareit said health care REITs distributed more than $7 billion in dividends in 2024.

Michael Stroyeck, head of health care analysis at Green Street, a real estate research company, said “there’s definitely a symbiotic relationship” between REITs and facility managers because they have the same goals. He said he has seen REITs replace operators that are having difficulties or go bankrupt.

John Kane, a senior vice president at the American Health Care Association and the National Center for Assisted Living, an industry group that represents nursing homes, said in a statement: “Given government funding often falls short, REITs have been valuable partners in helping to invest in long term care without influencing daily operations.”

Low Staffing at a Chain

Strawberry Fields REIT, which like CareTrust trades on the New York Stock Exchange, owns or controls the buildings of 131 nursing home facilities. The nursing home operations inside 66 of those facilities are owned by Moishe Gubin, Strawberry Fields’ chief executive, and Michael Blisko, one of its directors, according to Strawberry Fields’ for last year.

Gubin and Blisko also jointly own , which manages their nursing homes; Blisko is Infinity’s CEO. On average, Infinity-affiliated nursing homes provided an hour and a quarter less nursing care per resident per day than the national average of four hours, a ºÚÁϳԹÏÍø News analysis of federal records found.

Infinity and several of its nursing homes have recently settled 30 death and injury lawsuits in Cook County, Illinois, totaling more than $4 million, said Margaret Battersby Black, a Chicago lawyer. A jury last year awarded $12 million in a lawsuit brought against Infinity and one of its Chicago nursing homes over the 2023 death of Shirley Adams. A retired candy factory worker, Adams died after developing infected bedsores at Lakeview Rehabilitation and Nursing Center, according to the lawsuit.

“She had wounds that no one could explain,” one of her adult children, Leslie Adams, testified at trial. Medicare its lowest quality rating, one star out of five.

Paul Connery, a lawyer for Adams’ family, said they are still trying to collect on the judgment against the nursing home and management company, which now totals $17 million with interest and attorney fees.

“If I get caught speeding and I went to court, they issue me a ticket and I’ve got a fine to pay,” Adams said in an interview. “How are they able to still continue to move on with business like nothing has happened?”

In a phone interview and an email, Gubin said Strawberry Fields, Infinity, and the nursing homes are all legally distinct and that he has not played an active role in Infinity in more than a decade. He said nursing homes get sued all the time but that the verdict against Lakeview is so large that it will force the home to declare bankruptcy or shut down.

“The whole thing is unfortunate,” Gubin said by phone. “For 15 years they were a perfectly good guardian” and “a well-run building,” he said. “You wouldn’t think it was fair to be judged on your worst day.”

Blisko and an Infinity lawyer did not respond to requests for comment.

Strawberry Fields, which owns 10 assisted living facilities and two long-term care hospitals in addition to the nursing homes, earned net income last year of from $155 million in rent, a 21% profit margin, securities filings show. Gubin said those weren’t excessive returns.

A $110 Million Verdict

Traditionally, REIT leases make the operating companies responsible for paying property taxes, insurance premiums, and maintenance costs. In 2008, Congress gave health care REITs a new option to make money: On top of collecting rents, they could set up subsidiaries and take profits directly from health care businesses. They still must have independent management overseeing care decisions. Many REITs have embraced the role even though the subsidiaries must pay corporate taxes and risk losing money if the businesses do poorly.

Colony Capital was a REIT that through layers of shell corporations owned both the building and the operation of Greenhaven Estates, a Sacramento assisted living and memory care facility. In 2018 Greenhaven paid Colony $1.4 million in rent, nearly a third of its $4.5 million in revenue that year, according to financial records filed in court.

Greenhaven also was on the verge of losing its license, according to a revocation notice filed in November 2018 by the California Department of Social Services. Greenhaven had racked up years of health violations, including from letting untrained workers administer medications, lacking enough employees to care for people with dementia, and neglecting a resident who smeared feces over his body, bed, floor, and bathroom, the notice said.

In February 2019, a few weeks after celebrating her 100th birthday, Mildred Hernandez, a resident with Alzheimer’s, wandered out of Greenhaven in the middle of the night. Her assisted living wing had no exit door alarms even though it housed several residents with dementia, court records showed. Berta Lepe, one of Greenhaven’s caregivers, found Hernandez under a bush, wearing only a shirt and underwear. The temperature was in the 30s.

“She was talking, but I couldn’t understand what she was saying,” Lepe testified at trial over a lawsuit from Hernandez’s family. Hernandez died of hypothermia a few hours later, according to her death certificate.

Frontier Management, the company that Colony had hired to manage Greenhaven, denied liability and settled the lawsuit on undisclosed terms.

Since the lawsuit, Colony has changed its name to DigitalBridge, which no longer owns Greenhaven and gave up its REIT status. At trial earlier this year, DigitalBridge said resident care was the responsibility of Frontier and that Colony “encouraged” Frontier to address problems. Richard Welch, a former Colony executive, testified that replacing management is disruptive. “I viewed it as a last resort,” he said.

In March, a jury awarded Hernandez’s family $110 million: $10 million in compensatory damages, $92 million in punitive damages against DigitalBridge, and $8 million in punitive damages against Formation Capital, an asset management company.

“REIT money is very detached from knowing about or caring about patient or resident outcomes, because it’s not in their business model,” Ed Dudensing, a lawyer for the family, said in an interview. “Their allegiance is to their investors.”

DigitalBridge has asked the judge to delay finalizing the judgment while its legal challenges to the lawsuit and the verdict are evaluated. A DigitalBridge attorney and a corporate spokesperson did not respond to requests for comment, a Formation attorney declined comment, and a Frontier attorney and a spokesperson did not respond to a request for comment.

‘Wet From Head to Toe’

When CareTrust bought City Creek Post-Acute and Assisted Living in 2019, the Sacramento nursing home where Pearlene Darby lived had a one-star Medicare rating and was losing money. CareTrust leased the building to a management company called Kalesta Healthcare Group based on the business plan Kalesta submitted.

While CareTrust was not the operator, it held periodic phone calls with Kalesta, which provided “a full update of what’s happening at the facility,” including changes in leadership, financial progress, and health inspection survey results, according to deposition testimony by Ryan Williams, a Kalesta co-founder.

According to a state inspection report, in 2020, the year Darby died, City Creek left a resident in soiled linens “wet from head to toe lying in bed” for more than eight hours. During a different visit, a health inspector cited the home after watching a nurse put a dirty diaper back onto a resident after caring for a wound. “It was just a small stool and it is far from where the wound is,” the nurse told the inspector, according to the report.

James Callister, CareTrust’s chief investment officer, said in his deposition that CareTrust officials “review results of regulatory surveys provided to us by the tenant. We review the five-star rating.” He said, “We evaluate results of care, but we do not evaluate types of care given or how or when, no.”

Darby had been living in City Creek since 2011 after a stroke left her in a wheelchair. She needed help getting in and out of bed. From September through November 2020, Darby lost 30 pounds, her family’s lawsuit alleged. During those months, employees dropped her three times as one worker rather than the required two operated the mechanical lift, the lawsuit said.

The suit alleged City Creek failed to reposition her every two hours in bed or her wheelchair, which is the clinical standard for people at risk of bedsores, and to promptly order devices to protect her skin.

In November, the nursing home sent Darby to the hospital. A blood test found bacteria had entered her bloodstream from her feces’ touching open skin wounds, according to the lawsuit. The hospital diagnosed her with sepsis. A surgeon said she needed an operation to redirect fecal waste from her intestines but concluded she wasn’t medically stable enough for surgery, the suit said.

Darby began receiving comfort care measures and was sent back to City Creek. She died two weeks later. In court filings, CareTrust and Kalesta denied the allegations.

In a phone interview, Williams, the Kalesta co-founder, said Darby’s death occurred during the most challenging point of the covid pandemic, when California rules required any nurses testing positive for the virus to be sent home and nurses were quitting out of fear for their health. “It was the most herculean of professional efforts to secure enough staff,” he said.

While expressing sympathy for Darby and her family, he said it was “unconscionable” that personal injury lawyers sued nursing homes over care failures during “the worst of times.”

In court, CareTrust petitioned Judge Richard Miadich to dismiss it from the lawsuit before trial. “This case does not concern a property condition,” CareTrust’s lawyers wrote. “CareTrust is simply a landlord.” But the judge ruled last year a jury should decide whether CareTrust “exercised actual control over City Creek.”

The case was settled out of court a few months later. All parties declined to reveal the settlement terms.

A 67% Profit

As recently as November 2023 — four years after its acquisition — City Creek earned one star from Medicare. It was cited for failing to have the minimum nursing home staffing required by California law during five of 24 randomly selected days in 2022, according to an inspection report. Williams said in the interview that Kalesta had increased spending on nursing over the course of its ownership, including boosting wages, but that it takes a year or two to turn around a troubled nursing home. He said the home’s star rating in 2023 was dragged down by its poor inspection history from before Kalesta took over.

City Creek’s rating has climbed in the past two years, and it now has the top overall rating of five, according to Medicare. Medicare rates City Creek’s current staffing levels as average. That’s better than most nursing homes in more than 200 buildings CareTrust bought before 2025, according to a ºÚÁϳԹÏÍø News analysis of federal data. On average, CareTrust nursing homes provided a half hour less nursing care per resident per day than the national average of four hours.

In its statement to ºÚÁϳԹÏÍø News, CareTrust’s counsel Layne said the REIT worked to “identify quality operators as tenants,” and that the homes the REIT rents out have more nurses and aides than the minimum required for nursing homes by their state governments. “The operators are licensed by state regulators and retain sole responsibility for operations,” the statement said.

CareTrust, which now owns more than 500 senior housing and nursing home buildings, reported net income last year of $320 million from in rents and other revenue — a 67% profit margin. By comparison, HCA Healthcare, one of the nation’s largest for-profit hospital and health care chains, for last year.

Lesley Ann Clement, one of Darby’s lawyers, said cases like hers show the nursing home industry is wrong to complain it lacks financial resources for more staffing.

“There’s plenty of money,” Clement said. “They’re just not spending it on patient care.”

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If you or someone you know may be experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.”

Vince Lahey of Carefree, Arizona, embraces chatbots. From Big Tech products to “shady” ones, they offer “someone that I could share more secrets with than my therapist.”

He especially likes the apps for feedback and support, even though sometimes they berate him or lead him to fight with his ex-wife. “I feel more inclined to share more,” Lahey said. “I don’t care about their perception of me.”

There are a lot of people like Lahey.

Demand for mental health care has grown. Self-reported poor mental health days rose by 25% since the 1990s, analyzing survey data. According to the Centers for Disease Control and Prevention, suicide rates in 2022 that hadn’t been seen in nearly 80 years.

There are many patients who find a nonhuman therapist, powered by artificial intelligence, highly appealing — more appealing than a human with a reclining couch and stern manner. with begging for a therapist who’s “not on the clock,” who’s less judgmental, or who’s just less expensive.

Most people who need care don’t get it, said Tom Insel, former head of the National Institute of Mental Health, citing his former agency’s research. Of those who do, 40% receive “minimally acceptable care.”

“There’s a massive need for high-quality therapy,” he said. “We’re in a world in which the status quo is really crappy, to use a scientific term.”

Insel said engineers from OpenAI told him last fall that about 5% to 10% of the company’s then-roughly 800 million-strong user base rely on ChatGPT for mental health support.

Polling suggests these AI chatbots may be even more popular among young adults. A KFF poll found about 3 in 10 respondents ages 18 to 29 for mental or emotional health advice in the past year. Uninsured adults were about twice as likely as insured adults to report using AI tools. And nearly 60% of adult respondents who used a chatbot for mental health didn’t follow up with a flesh-and-blood professional.

The App Will Put You on the Couch

A burgeoning industry of apps offers AI therapists with human-like, often unrealistically attractive avatars serving as a sounding board for those experiencing anxiety, depression, and other conditions.

ºÚÁϳԹÏÍø News identified some 45 AI therapy apps in Apple’s App Store in March. While many charge steep prices for their services — one listed an annual plan for $690 — they’re still generally cheaper than talk therapy, which can cost hundreds of dollars an hour without insurance coverage.

On the App Store, “therapy” is often used as a marketing term, with small print noting the apps cannot diagnose or treat disease. One app, branded as OhSofia! AI Therapy Chat, had downloads in the six figures, said OhSofia! founder Anton Ilin in December.

“People are looking for therapy,” Ilin said. On one hand, the product’s name ; on the other, it warns in that it “does not provide medical advice, diagnosis, treatment, or crisis intervention and is not a substitute for professional healthcare services.” Executives don’t think that’s confusing, since there are disclaimers in the app.

The apps promise big results without backup. its users “immediate help during panic attacks.” it was “proven effective by researchers” and that it offers 2.3 times faster relief for anxiety and stress. (It doesn’t say what it’s faster than.)

There are few legislative or regulatory guardrails around how developers refer to their products — or even whether the products are safe or effective, said Vaile Wright, senior director of the office of health care innovation at the American Psychological Association. Even federal patient privacy protections don’t apply, she said.

“Therapy is not a legally protected term,” Wright said. “So, basically, anybody can say that they give therapy.”

Many of the apps “overrepresent themselves,” said John Torous, a psychiatrist and clinical informaticist at Beth Israel Deaconess Medical Center. “Deceiving people that they have received treatment when they really have not has many negative consequences,” including delaying actual care, he said.

States such as Nevada, Illinois, and California are trying to sort out the regulatory disarray, enacting laws forbidding apps from describing their chatbots as AI therapists.

“It’s a profession. People go to school. They get licensed to do it,” said Jovan Jackson, a Nevada legislator, who co-authored an enacted bill banning apps from referring to themselves as mental health professionals.

Underlying the hype, outside researchers and company representatives themselves have told the FDA and Congress that there’s little evidence supporting the efficacy of these products. What studies there are — and some companion-focused chatbots are “consistently poor” at managing crises.

“When it comes to chatbots, we don’t have any good evidence it works,” said Charlotte Blease, a professor at Sweden’s Uppsala University who specializes in trial design for digital health products.

The lack of “good quality” clinical trials stems from the FDA’s failure to provide recommendations about how to test the products, she said. “FDA is offering no rigorous advice on what the standards should be.”

Department of Health and Human Services spokesperson Emily Hilliard said, in response, that “patient safety is the FDA’s highest priority” and that AI-based products are subject to agency regulations requiring the demonstration of “reasonable assurance of safety and effectiveness before they can be marketed in the U.S.”

The Silver-Tongued Apps

Preston Roche, a psychiatry resident who’s , gets lots of questions about whether AI is a good therapist. After trying ChatGPT himself, he said he was “impressed” initially that it was able to use techniques to help him put negative thoughts “on trial.”

But Roche said after seeing posts on social media discussing people developing psychosis or being encouraged to make harmful decisions, he became disillusioned. The bots, he concluded, are sycophantic.

“When I look globally at the responsibilities of a therapist, it just completely fell on its face,” he said.

This sycophancy — the tendency of apps based on large language models to empathize, flatter, or delude their human conversation partner — is inherent to the app design, experts in digital health say.

“The models were developed to answer a question or prompt that you ask and to give you what you’re looking for,” said Insel, the former NIMH director, “and they’re really good at basically affirming what you feel and providing psychological support, like a good friend.”

That’s not what a good therapist does, though. “The point of psychotherapy is mostly to make you address the things that you have been avoiding,” he said.

While polling suggests many users are satisfied with what they’re getting out of ChatGPT and other apps, there have been about the service or encouragement to self-harm.

And or have been filed against OpenAI after ChatGPT users died by suicide or became hospitalized. In most of those cases, the plaintiffs allege they began using the apps for one purpose — like schoolwork — before confiding in them. These cases are being .

Google and the startup Character.ai — which has been funded by Google and has created “avatars” that adopt specific personas, like athletes, celebrities, study buddies, or therapists — are settling other wrongful-death lawsuits, .

OpenAI’s CEO, Sam Altman, has said up to may talk about suicide on ChatGPT.

“We have seen a problem where people that are in fragile psychiatric situations using a model like 4o can get into a worse one,” Altman said in a public question-and-answer session reported by , referring to a particular model of ChatGPT introduced in 2024. “I don’t think this is the last time we’ll face challenges like this with a model.”

An OpenAI spokesperson did not respond to requests for comment.

The company has said it on safeguards, such as referring users to 988, the national suicide hotline. However, the lawsuits against OpenAI argue existing safeguards aren’t good enough, and some research shows the problems are . OpenAI its own data suggesting the opposite.

OpenAI is , offering, early in one case, a variety of defenses ranging from denying that its product caused self-harm to alleging that the defendant misused the product by inducing it to discuss suicide. It has also said it’s working to .

Smaller apps also rely on OpenAI or other AI models to power their products, executives told ºÚÁϳԹÏÍø News. In interviews, startup founders and other experts said they worry that if a company simply imports those models into its own service, it might duplicate whatever safety flaws exist in the original product.

Data Risks

ºÚÁϳԹÏÍø News’ review of the App Store found listed age protections are minimal: Fifteen of the nearly four dozen apps say they could be downloaded by 4-year-old users; an additional 11 say they could be downloaded by those 12 and up.

Privacy standards are opaque. On the App Store, several apps are described as neither tracking personally identifiable data nor sharing it with advertisers — but on their company websites, privacy policies contained contrary descriptions, discussing the use of such data and their disclosure of information to advertisers, like AdMob.

In response to a request for comment, Apple spokesperson Adam Dema to the company’s App Store policies, which bar apps from using health data for advertising and require them to display information about how they use data in general. Dema did not respond to a request for further comment about how Apple enforces these policies.

Researchers and policy advocates said that sharing psychiatric data with social media firms means patients could be profiled. They could be targeted by dodgy treatment firms or charged different prices for goods based on their health.

ºÚÁϳԹÏÍø News contacted several app makers about these discrepancies; two that responded said their privacy policies had been put together in error and pledged to change them to reflect their stances against advertising. (A third, the team at OhSofia!, said simply that they don’t do advertising, though their app’s notes users “may opt out of marketing communications.”)

One executive told ºÚÁϳԹÏÍø News there’s business pressure to maintain access to the data.

“My general feeling is a subscription model is much, much better than any sort of advertising,” said Tim Rubin, the founder of Wellness AI, adding that he’d change the description in his app’s privacy policy.

One investor advised him not to swear off advertising, he said. “They’re like, essentially, that’s the most valuable thing about having an app like this, that data.”

“I think we’re still at the beginning of what’s going to be a revolution in how people seek psychological support and, even in some cases, therapy,” Insel said. “And my concern is that there’s just no framework for any of this.”

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