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

Eight days before my 33rd birthday in April, a social worker at a crisis clinic near Denver determined I was an imminent danger to myself. She placed me on an involuntary 72-hour mental health hold.

What came next wasn’t treatment, but a search for a bed. Clinic staffers called area hospitals with inpatient psychiatric units, asking if they had available beds. They didn’t. So, I was told I had to spend the night at the clinic, which is open 24/7. I settled into a recliner, trying to make myself comfortable as my mind drifted in a blank, disassociated haze. Sleep came in brief bursts.

Since the 1950s, the United States has seen a nationwide due in part to deinstitutionalization and the rise of antipsychotics. But that has created a critical shortage for those needing help. From 2011 to 2023, the number of hospitals with inpatient psychiatric units , according to a 2025 study. Another study from that year found that this country has 28.4 inpatient psychiatric beds per 100,000 people — not even half the 60-bed ratio researchers frequently refer to as the .

The shortage has created what the American Psychiatric Association : emergency rooms overwhelmed with people suffering from severe mental health illnesses, inpatient stays prematurely shortened to speed up bed turnover, and acutely ill individuals left without critical care.

“Where are these people going?” said , an assistant health policy professor at Rutgers University, who co-authored those 2025 studies. “For people who don’t receive this care, they don’t just go away. How is it affecting them? Society? Their families?”

Meanwhile, the White House shut down the part of the national suicide hotline catering to LGBTQ+ youth, President Donald Trump’s 2027 budget proposal calls for cuts to agencies , and Health and Human Services Secretary Robert F. Kennedy Jr. recently announced a plan to .”

A Fractured System

I was already intimately familiar with the country’s fractured mental healthcare system before I was involuntarily committed. What I had yet to experience myself, I saw through my wife: waitlists, outpatient programs stretched beyond capacity, and inpatient psychiatric care so scarce that access often depends on surviving a crisis severe enough to justify it.

She died by suicide after we had separated.

As the years passed, grief and anxiety pushed me from observer to patient.

At the crisis clinic, I woke up the following morning disoriented and groggy. In the bathroom — its door deliberately unable to latch, swinging both ways so staffers could enter in case of an emergency — I stood at the sink and watched the faucet run, trying to piece together how I had ended up here.

America’s history of treating mental illness is long and complicated.

The 19th and 20th centuries saw the removal of people with severe mental disorders from jails and — squalid facilities designed to house the poor — to state asylums that (though they ultimately became ). From the 1860s to the 1930s, the number of psychiatric hospitals increased dramatically, according to the American Psychiatric Association, and by 1955, the number of psychiatric beds in the U.S. peaked at more than half a million.

However, owing to the development of antipsychotics, the belief that psychiatric institutions were inhumane, and President John F. Kennedy’s 1963 to free thousands of Americans from a life in institutions, many state hospitals shut down. An estimated for adults and kids are left in a country where more than 14 million experience severe mental illness each year.

Two years after JFK’s legislation passed, a new policy prohibited federal Medicaid funds from covering inpatient psychiatric care in facilities . The goal was to encourage states to move patients out of large, often substandard psychiatric institutions into community-based care settings.

The consequences of these changes, however, have been far-ranging. People with severe mental illnesses are often forced to as they wait for a bed to open. The length of stay in state psychiatric hospitals , according to research by the Treatment Advocacy Center, a national organization focused on eliminating barriers to the treatment of severe mental illness. And some people with mental illness .

From 1986 to 2014, as the behavioral health crisis intensified, mental health expenditures in the U.S. rose from $32 billion to $186 billion — though the proportion of that spending allocated to inpatient care .

This period also recorded major policy shifts affecting inpatient hospitalization rates, notably the 1999 U.S. Supreme Court decision in Olmstead v. L.C. The ruling shifted care away from psychiatric facilities by mandating states to people with developmental and mental disabilities.

“The road to hell is paved with good intentions,” said Leslie Carpenter, legislative advocacy manager at the Treatment Advocacy Center. “A lot of these bills, including the Community Mental Health Act, were really well intended and ended up with adverse consequences.”

For me, that next day at the clinic passed both painfully slowly and in a blur. A staff member I hadn’t met before told me they were still reaching out to hospitals across the region. The search for a bed continued.

‘No One Wants To Pay for Any of This Care’

Last year, members of Congress introduced two bills to change the 16-bed Medicaid funding cap at inpatient psychiatric facilities, the and the , which would increase the cap to 36 beds. Both have stalled in the House.

According to the Congressional Budget Office, a federal agency that analyzes budgetary and economic issues, eliminating the 16-bed limit would increase Medicaid expenditures from 2024 to 2033.

“No one wants to pay for any of this care that people need,” said Colorado state Sen. , a Democrat who has witnessed limitations to Colorado’s mental healthcare system firsthand because her son has schizoaffective disorder.

In lieu of federal action, states are stepping up to bridge the gaps.

Colorado, 15 other states, and Washington, D.C., now operate under waivers allowing Medicaid to fund inpatient facilities for mental health treatment, according to KFF data. Seven additional states have waivers pending. One 2025 study found that these waivers may be tied to fewer hospitalizations, emergency department visits, and incarcerations .

Yet even local efforts to improve mental healthcare face resistance. In California, Colorado, Iowa, Missouri, Nebraska, and New York, locals have pushed back against proposed psychiatric facilities for minors, claiming such facilities will worsen safety and lower property values. Behavioral health advocates have disputed these claims and argued they are rooted in stigma.

That psychiatric facility in Colorado was . The state has nearly 20 inpatient beds per 100,000 people, , according to 2022 data across all 50 states plus Washington, D.C., collected by the Treatment Advocacy Center. Wyoming ranked first with 47.3 beds per 100,000 residents, although, as the least populous state, it has only 275 total inpatient beds compared with California’s 5,703. Minnesota ranked last, with only 4.3 inpatient beds per 100,000 residents.

While increasing the number of inpatient psychiatric beds is vital, mental health advocates are also calling for , such as peer support specialists and clubhouses, where people with serious mental illnesses can learn life skills and find community.

When it came time for me to use our mental health safety net, I was among the fortunate ones: At noon the day after my hold began, a bed opened at a hospital in Denver — a rare stroke of luck in a system in which many people wait days or weeks for the care they need. An ambulance transferred me to the hospital at 3 p.m., marking 21 hours into my 72-hour hold.

Two days later, on my last day at the psychiatric hospital, I stood outside the nurse’s station awaiting discharge papers.

A man I had not seen before looked at me and asked, “Are you leaving?”

“Yes,” I said. “Are you being admitted?”

“Yeah,” he responded. “This is my third time being hospitalized in a year.”

I shook his hand. “Good luck,” I said, and I walked out the door.

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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 Ñî¹óåú´«Ã½Ò•îl Health News and share your story.

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So he didn’t know he had a bill to pay. After he and Tix returned home to Minnesota in April, they got a letter from Wellcare, the insurer that provided his drug plan, saying his coverage had been terminated after three months of unpaid premiums totaling $28.80. Under Medicare’s rules, he can’t enroll in a plan again until the fall, for coverage beginning in 2027.

Pare takes Xarelto, a blood thinner that reduces his risk of strokes, blood clots, and pulmonary embolism. “He could bleed to death without it,” Tix said. A 90-day supply of the drug costs about $1,800 using a coupon from GoodRx, a discount drug website, she said.

Pare is among tens of thousands of Medicare beneficiaries who were on Wellcare’s Value Script drug plan who will likely go without prescription drug coverage for the rest of the year because they didn’t pay premiums for three months.

Next year, thousands more people in 32 states and Washington, D.C., who are enrolled in zero-premium drug plans from Wellcare and other insurance companies may find themselves in the same situation if their premiums go up and they don’t realize it, according to a Ñî¹óåú´«Ã½Ò•îl Health News analysis of drug plan data. Premiums and other changes for 2027 will be unveiled in September.

Going without medication can be life-threatening, especially for Medicare beneficiaries. take one or more prescription drugs, according to the Centers for Disease Control and Prevention. Almost half live with four or more chronic health conditions that can cause functional or cognitive impairments.

Congress added prescription drug coverage to Medicare in 2003. But the coverage is administered by commercial insurance companies, which compete fiercely with one another for the business of about enrolled in drug plans.

Zero-dollar or very low monthly premiums have helped make Wellcare’s Value Script the bestselling stand-alone prescription drug plan in Medicare, with nearly 6 million customers across the U.S., according to government data. But in 26 states and Washington, D.C., some Value Script members who didn’t have to pay a premium last year were caught off guard by increases in 2026.

After a two-month grace period — which Wellcare extended to three — Medicare drug plans can drop customers who don’t pay their premiums, no matter how small the amount. Some members who lost their coverage in Nevada, for example, owed as little as $8.10 for three months, according to a Ñî¹óåú´«Ã½Ò•îl Health News analysis of Medicare drug plan data.

Wellcare terminated coverage for about 140,000 Value Script beneficiaries in April, according to a person with knowledge of the matter who was not authorized to speak publicly about it and feared reprisals at work for doing so. About 40,000 of the people who were dropped may be able to enroll in new coverage immediately because they have low incomes and receive financial assistance through a program Medicare calls “.”

Multiple state officials said they had heard the same disenrollment figures, including Nevada’s insurance commissioner, Ned Gaines, who chairs the National Association of Insurance Commissioners’ senior issues task force; Rebecca Gouty, director of the State Health Insurance Assistance Program in West Virginia; and Tim Smolen, director of Washington state’s Statewide Health Insurance Benefits Advisors. The West Virginia and Washington initiatives are part of the federally funded , or SHIP, which provides free, unbiased help navigating Medicare.

Surprise Bills

The Centers for Medicare & Medicaid Services, which oversees Medicare drug plans, declined to provide the number of Value Script members who lost coverage due to unpaid premiums. “The agency does not publicly provide plan-specific disenrollment figures or state-level breakdowns related to the non-payment of premiums,” Christopher Krepich, a spokesperson, said in a written statement to Ñî¹óåú´«Ã½Ò•îl Health News.

Centene Corp., Wellcare’s parent company, also declined to provide disenrollment numbers.

“We recognize how disruptive a loss of coverage can be and are committed to helping members understand their options,” said Sarah Baiocchi, senior vice president for specialty and prescription drug plans at Centene. She acknowledged that “some members in our Value Script plan experienced a premium for the first time, or for the first time in several years.”

Baiocchi said all Value Script members received a CMS-required annual notice of changes in September, before the premium increases took effect.

A sent to members in two states and Washington, D.C., is 21 pages long. The new premium is mentioned on pages 3 and 8, along with changes to out-of-pocket costs and how to find updates on covered drugs and network pharmacies.

The company also informed members about 2026 premium changes through phone calls, text messages, regular mail, or email, Baiocchi said.

People who are dropped are not able to reenroll or join another drug plan until the start of the open enrollment period this fall for coverage beginning Jan. 1, unless they qualify for an exception, Krepich said. And because they will have gone without coverage for at least 63 days, they could be hit with a permanent that increases every year for the rest of their lives.

“Medicare should be doing something about this so that we can go ahead and get coverage now,” said Wayne Bennett, 74, who lives in Durham, North Carolina.

In May, he found out that Wellcare had canceled his Value Script plan because he hadn’t paid his $3.60 monthly premiums. He takes nine prescription drugs to treat his blood pressure, glaucoma, chronic obstructive pulmonary disease, and other health problems. He filled most of his prescriptions — including several at no cost — before he lost coverage. He doesn’t know what he’ll have to pay when his supply runs out.

Gouty, the West Virginia program head, said many Medicare beneficiaries arrange for their monthly drug plan premium to be automatically deducted from their Social Security benefits, and that many likely thought that choice remained in place until they changed it.

“They didn’t realize that when the plan was a zero premium in 2025, that stopped the Social Security premium deduction and they would have had to reelect it for 2026,” Gouty said.

In other words, even if they mistakenly thought the premium was still zero, Medicare beneficiaries would have needed to somehow allow Social Security to make deductions — something the agency doesn’t do — or set up a payment plan through their bank or credit card in case payment was necessary.

“That sounds goofy,” Tix said.

Centene’s Baiocchi blamed the Social Security Administration for the problem: “We believe this was a key driver of non-payment disenrollments and subsequent complaints.”

Spokespeople for the agency referred questions about the matter to CMS.

Krepich said legal requirements for drug plan enrollment and disenrollment limit what CMS can do to help beneficiaries who lose coverage for not paying their premiums.

‘Pretty Upset’

Now that Pare has no prescription drug coverage, his doctor replaced his blood thinner medication with a much less expensive drug that should be just as effective. Pare paid $111 for four other medications that used to be free under his Value Script plan. He hasn’t had to refill four more prescriptions yet and doesn’t know what they will cost, Tix said.

If Wellcare members knew about the premium increases, they could have set up direct billing or an automatic payment plan early this year before the payment grace period ended April 1. But they would have been able to fill prescriptions during the grace period, so if they didn’t see Wellcare’s notices, they likely assumed there was no problem with their coverage.

Bennett, the North Carolina man, said Wellcare used to send him text messages with health tips and reminders when it was time to pick up a prescription. He didn’t know his premium had increased from $0 to $3.60 until it was too late.

“I was pretty upset,” he said, when he called the company. “The premium wasn’t that much, and I was ready to pay it right off the bat. I had my credit card out ready to make the payment.”

The customer service representative wouldn’t let him pay because his coverage had been canceled, Bennett said.

Hoping to restore it, Bennett called , a Durham nonprofit that advises Medicare beneficiaries and is one of more than 2,200 SHIP sites across the country. He was told he must wait until January to restart his drug coverage, said the group’s executive director, Gina Upchurch.

He doesn’t qualify for the “Extra Help” low-income subsidy or meet other CMS criteria for a , which would allow him to change drug plans during the year. CMS typically allows midyear switches for beneficiaries who, for example, move out of their plan’s service area, experience a natural disaster, or get help paying for drugs from a .

Senior PharmAssist was able to help one of its participants join another drug plan after she lost Value Script coverage because she is in North Carolina’s pharmacy assistance program for people with HIV/AIDS and has limited income, Upchurch said.

A further exception allows any Medicare beneficiary to enroll at any time in a drug plan that has earned five stars, the top grade in Medicare’s performance ratings. However, there are no five-star Medicare drug plans available to the general public. Only two insurers offer five-star plans, and only for retirees from certain employers. Their combined enrollment is about 8,700 as of June 1, according to the insurers.

But Upchurch, with more than two decades of Medicare expertise, doesn’t blame beneficiaries for not paying attention or for assuming Wellcare’s messages were bogus. Older adults are particularly vulnerable to identity theft and other scams and are often advised to ignore junk mail and calls from telemarketers.

Since Value Script members such as Bennett continued to get their prescriptions filled during the payment grace period, “why wouldn’t they think this was a scam?” Upchurch asked. “They are constantly bombarded by people selling them something that’s illegitimate or trying to scam them.”

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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, Ñî¹óåú´«Ã½Ò•îl Health 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.

Ñî¹óåú´«Ã½Ò•îl Health 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 Ñî¹óåú´«Ã½Ò•îl Health 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, Ñî¹óåú´«Ã½Ò•îl Health 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 Ñî¹óåú´«Ã½Ò•îl Health 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.

Ñî¹óåú´«Ã½Ò•îl Health 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.

Ñî¹óåú´«Ã½Ò•îl Health 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 Ñî¹óåú´«Ã½Ò•îl Health 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’

Ñî¹óåú´«Ã½Ò•îl Health 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.

Ñî¹óåú´«Ã½Ò•îl Health 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 Ñî¹óåú´«Ã½Ò•îl Health 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 Ñî¹óåú´«Ã½Ò•îl Health News reporting team.

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We’re expecting our first baby boy in end of August. And when I think about what it’s going to feel like to take care of my wife and my new son and my mom, it’s a bit overwhelming.

If you are taking care of a child and you have a parent over 65, you’re among millions across the U.S. in the same life stage.

Nearly a quarter of all American adults — and half of all adults in their 40s — fall into this “sandwich generation” category, . And being in the middle of that sandwich can feel … intense.

“I have kind of prided myself on being self-sufficient. And in this season of life, that’s almost been laughable,” said Jason McAnally, a Nashville father of two who helps care for his aging dad.

HealthQ hosts Cara Anthony of Ñî¹óåú´«Ã½Ò•îl Health News and Blake Farmer of Nashville Public Radio, both in the sandwich generation themselves, are your approachable guides to an unapproachable healthcare system. In this one-hour special about navigating health and caregiving, they tap researchers, physicians, experts, and their own personal experience to explore:

• Identity: When to start calling yourself a caregiver, and why it matters.
• FMLA: How to start a conversation with your boss about taking federally protected leave from work.
• Kids and mental health: How to know it’s time to take an anxious child to therapy.
• Early-onset cancer: What you need to know about spotting diseases that are on the rise among people under 50.

The HealthQ team acknowledges the messiness, the humor, and the beauty of this season of life. Come on the journey with us.

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

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 Ñî¹óåú´«Ã½Ò•îl Health News.

This <a target="_blank" href="/aging/healthq-special-sandwich-generation-caregiving-fmla-early-onset-cancer/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

By the end of the month, she was in a hospital bed.

Hvatum, a part-time computer science professor, has a weakened immune system due to a rare condition known as primary immunodeficiency, which makes it difficult for her body to fight infections. Prior to her 2005 diagnosis, she had four bouts of shingles, a painful rash caused by a virus.

For more than a decade she relied on an expensive medicine to treat her chronic condition — and relied on her insurance to pay for it.

Then the denial letters came.

The Medical Service

To give her weakened immune system a boost, she relies on Hizentra, which is made up of antibodies collected from donated blood plasma.

At her home, near St. Louis, Hvatum can administer the complex medicine herself. She uses a large syringe to draw the medicine from a vial and loads the syringe into a plastic apparatus that looks like a toy Nerf gun. She cranks a blue plastic dial that triggers a steady drip of the medicine, and it snakes through plastic tubing until it enters her leg through a needle.

The Bill

$8,141.94: The full charges for a 28-day supply of Hizentra without insurance coverage.

After her Medicare Advantage plan through Humana denied payment for the drug in January, she missed several weekly doses.

The Billing Problem: Prior Authorization

Hvatum got tangled up in the controversial process known as prior authorization, which often requires patients or their medical team to get an insurance company’s approval before obtaining medicines or treatment. 

At the start of the year, after Hvatum switched Medicare Advantage plans, she received a letter saying that Humana, her new carrier, had denied her “prior authorization prescription request” for Hizentra. The authorization from her previous insurer didn’t carry over. 

Without the medicine, Hvatum developed a urinary tract infection that sent her to the emergency room on Jan. 30. Though it is a common infection, her doctor advised her to go there because people with her condition can get sick and deteriorate quickly, she said. 

That ER visit turned into an overnight hospital stay. That turned into hospital charges of more than $18,000, and again her insurance denied payment, saying this time that she wasn’t sick enough to require hospital care.

Hvatum’s experience with prior authorization is not unique.

Medicare Advantage plans reviewed nearly 53 million prior authorization requests in 2024, . That’s equivalent to nearly two reviews for every person enrolled in the program.

It’s common for Medicare Advantage plans to deny payment for care — which helps them make a profit, said Carrie Graham, director of the Medicare Policy Initiative at Georgetown University’s Center on Health Insurance Reforms.

The government pays a monthly sum to Medicare Advantage insurers to cover care for each member. “They make a profit if the care that person receives in that year is less than the amount they receive,” Graham said.

More than half of eligible Medicare beneficiaries choose Medicare Advantage insurance coverage. In 2026, roughly 35 million selected one of these private policies offered by insurance companies.

Humana is a dominant player in the space. Nearly half of all Medicare Advantage enrollees nationwide are covered by UnitedHealth Group or Humana, according to KFF.

The killing of UnitedHealthcare CEO Brian Thompson prompted renewed scrutiny of prior authorization. Last summer, months after his death, the nation’s largest insurers, including Humana, signed a pledge that outlined a handful of commitments to ease the burden on patients.

For example, insurers vowed to reduce the number of services that would require prior authorization approval. They also promised to reduce delays by honoring existing prior authorizations for a 90-day period when patients switched plans.

That’s not what happened in Hvatum’s case.

Humana said this pledge to honor existing approvals comes with limitations. “These commitments are for medical services only and do not apply to prescription medications,” spokesperson Mark Taylor said.  

Humana declined to comment on the specifics of Hvatum’s case, even though she agreed to waive her privacy rights, giving the insurer permission to comment.

While acknowledging that the prior authorization process can be deeply frustrating for patients, Humana said it “builds important checks and balances into the healthcare system by verifying that treatments and care delivery are in the best interest of patient safety and quality of care, while safeguarding taxpayer dollars.”

In July 2025, it would remove one-third of prior authorization requirements for outpatient services.

“We are committed to making the process faster and more seamless for patients and providers,” Humana said in a statement Taylor provided to Ñî¹óåú´«Ã½Ò•îl Health News.

The Resolution

Hvatum appealed, and Humana in late January reversed its initial payment denial for Hizentra, enabling her to afford her medicine again.

But the approval came with a catch: It expires at the end of the year, after which she would need to obtain approval all over again.

Hvatum has since switched to a different drug — and she might not stick around for any more medical-bill fights like this one. She and her husband are considering a move to Norway, a place with universal healthcare. He is a citizen there, which could give her a path to public health coverage.

The industry’s promises to change are too little, too late for Hvatum. 

By her account, she has done her part. Running is her outlet, maybe an obsession, and it keeps her healthy. Scores of medals and trophies are tucked about her home. Some sit on a white wicker end table, next to family photos, candles, and framed St. Louis Cardinals memorabilia. Above a large bay window in the kitchen, medals hang from ribbons of all colors, made to look almost like custom window drapery.

“I have done everything I possibly can to be healthy,” Hvatum said, sitting at her dining room table in her running gear. Her printed T-shirt read, “If found on ground, please drag across the finish line.”

The Takeaway

Data shows patients should appeal prior authorizations, because those who do often get their denials reversed, Graham said. In fact, 81% of Medicare Advantage appeals were partially or fully overturned in 2024, according to KFF.

Relatively few people appeal, because “it’s an exhausting process,” Graham said. It puts the onus on patients — and doctors get frustrated, too.

It’s not just Medicare Advantage plans that subject enrollees to prior authorization approvals. It’s prevalent in other types of coverage, and it has prompted blowback from the public. Graham believes the public outcry instigated the industry’s pledge to change.

Hvatum is well versed in filing appeals. She submitted another appeal to Humana after the insurer denied payment for her January hospital stay. Humana again reversed its denial of payment in her case.

Hvatum blames Humana for her January trip to the hospital. Had Humana approved her Hizentra, she said, she could have avoided hospital care altogether.

In March, she had a stroke. Humana denied coverage of that hospital stay, too.

Humana determined that it was not reasonable for the physician who admitted Hvatum to think she would need to stay at least two nights, the threshold for approval. “You had a small stroke,” Humana’s denial letter stated.

Hvatum noted the letter was dated March 25, two days after she was hospitalized. Humana reversed its denial two weeks after Hvatum appealed.

“They love to send you the denials fast,” Hvatum said. “Approvals take longer.”

Bill of the Month is a crowdsourced investigation by and that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? !

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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 Ñî¹óåú´«Ã½Ò•îl Health News.

This <a target="_blank" href="/health-care-costs/healthq-sandwich-generation-caregiver-title-stages-expectant-aging-parents-tips/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

But this year, because of a new Medicare program, Curry has traveled a little more often.

In February, during one trip, he was told unexpectedly that he needed preapproval for the procedure. Then he went again a month or so later to get the injection, for a total of 10 hours on the road. His clinic wanted him to come in a third time, which they had never asked of him before. That appointment was “just to fill out a piece of paper to tell them how you feel again,” Curry said, so he hasn’t gone.

In January, Oklahoma became one of six states to begin a pilot program testing the use of preapprovals in traditional Medicare, the federal health insurance program for people 65 and older or with disabilities. Medicare had previously eschewed the practice — also known as prior authorization — which requires patients or someone on their medical team to seek insurance approval before proceeding with certain procedures, tests, and prescriptions.

Epidurals like Curry’s are among 13 medical services subject to the new program because the Trump administration says they’re prone to fraud or misuse. Powered by artificial intelligence, the program — called the Wasteful and Inappropriate Service Reduction Model, or WISeR — is intended to save the federal government money and protect patients from potentially unsafe or unneeded care.

Yet early reviews from Oklahoma and the other pilot states — Arizona, New Jersey, Ohio, Texas, and Washington — suggest WISeR’s rollout has not been smooth. Patients, doctors, and other healthcare professionals who spoke with Ñî¹óåú´«Ã½Ò•îl Health News say the effort has created confusion, errors, long wait times, and stress. Some described the rollout as “horrendous” and say people enrolled in Medicare in the pilot states are now getting ensnared in the same red tape as those with private insurance.

One key concern is that it all happened too hastily. WISeR was and launched in mid-January.

That was “quicker than normal” for the federal government, said Todd Baker, who recently stepped down as CEO of the Ohio State Medical Association. Doctors “just sort of had to figure it out,” added Jeb Shepard, director of policy at the Washington State Medical Association.

Government contractors have also acknowledged the rapid pace. “We’ve had an aggressive rollout from the time of being notified to going live,” said Jeremy Friese, CEO of Humata Health, the vendor for Oklahoma. Tech executives servicing other states have said they were still adding features to their products in the spring.

Abe Sutton, director of the Center for Medicare and Medicaid Innovation, which is administering the program, didn’t comment on the rollout schedule. But he said in a statement that the goal of these reforms is to ensure that prior authorization is efficient, fast, and streamlined.

“The model aims to reduce inappropriate care without delaying appropriate care,” he said.

Mehmet Oz, the leader of the Centers for Medicare & Medicaid Services, that they were “rolling out some prior authorization on abused practices.”

“The purpose of these is not to deny care,” Oz continued. “It’s to make sure you get the care you need and deserve, not the care some unscrupulous doctor wants to use on you.”

Medicare has struggled in recent years with suspected fraud associated with particular services. The Department of Health and Human Services’ inspector general spending on skin substitutes, for example, had surged nearly 700% over two years, raising “major concerns about fraud, waste, and abuse.” Skin substitutes are among the currently subject to review under WISeR.

The program also imposes prior authorization requirements for kyphoplasty, a surgery for spinal fractures, which a report by the Medicare Payment Advisory Commission .

Sutton acknowledged, however, that “the percentage of providers committing waste, fraud, and abuse is small.”

Consumers and clinicians largely detest prior authorization. Even as federal health officials test the process for Medicare, the Trump administration is for those with private insurance. According to a conducted in January, 69% of insured adults consider prior authorization a burden for care.

Through WISeR, doctors and their staff log in to online portals to submit medical records that justify the procedures. Using artificial intelligence, the systems quickly approve applications that meet the program’s criteria, Friese, Humata’s chief executive, told Ñî¹óåú´«Ã½Ò•îl Health News. He said there is an “immediate yes” in 88% of cases for which clinical data supports an approval.

CMS has touted the process as one in which decisions are returned within 72 hours. After that, clinicians receive a “universal tracking number,” which allows them to schedule the procedure and get paid. In practice, however, participants say the process is anything but easy.

The University of Washington’s medical system alone had nearly 100 patients waiting earlier this year for epidural injections due to WISeR-related delays, from the office of U.S. Sen. Maria Cantwell (D-Wash.) that drew on hospital association data. “Now, patients are subject to delays or denials which did not exist prior to the WISeR Model,” the report said.

Curry, the Oklahoma cattle farmer, said he might go to Kansas for future treatments to avoid the approval process. Dorota Gribbin, a New Jersey-based physical medicine and rehabilitation physician, said that by the time authorization came for one of her patients who needed a back pain procedure, the patient had gone to the hospital for more expensive care.

Jennifer Valle, a precertification and insurance supervisor at Clinical Radiology of Oklahoma, said when it comes to kyphoplasties, there has been a lot of “nitpicking” from reviewers. Other times, information her practice provides to CMS gets overlooked, she said, and reviewers ask for imaging that’s already in the file.

Claims with no problems are supposed to be paid within 15 days, said James Webb, a musculoskeletal radiologist in Tulsa, Oklahoma, who has also been frustrated by the prior approval and reimbursement process for kyphoplasties. “Six- to eight-week delays is what we’ve been seeing,” he said.

“It’s been horrendous,” said Jerry Sobel, a Phoenix-area pain management doctor. “Right from the beginning, there seemed to be no organization.” Sobel said that as of May, he hadn’t gotten paid by Medicare for nine epidurals.

“We continuously monitor operations and work closely with stakeholders to address questions and improve the provider experience,” said Sundar Subramanian, the CEO of Zyter, which has the contract for Arizona.

During an April webinar, another Zyter executive acknowledged a large backlog in payments stretching to January. Those backlogs “are currently being resolved,” Medicare’s Sutton said, without providing further detail.

When asked about other issues — including what doctors suspect are AI-driven errors — Medicare’s Sutton said the agency appreciates “feedback on provider experience.” It will be used “to help providers better understand WISeR processes,” he said.

Although CMS vendors say humans make the final decisions on approvals, doctors and their staffs believe artificial intelligence is playing a large role in the process and that denials are sometimes the result of AI hallucinations that garble or make up information.

One Arizona doctor, who wasn’t authorized by his practice to speak, recalled a denial saying his patient wasn’t eligible for procedures in the thoracic region, or mid-back. The patient needed an injection to the neck. Webb, the Oklahoma radiologist, documented four times that a patient lacked numbness, and yet his WISeR application was still denied, citing numbness, which, in the reviewer’s interpretation, would rule out the spinal surgery procedure.

Friese, Humata’s CEO, said he hasn’t heard about any AI hallucinations.

The process is also raising government costs. With more rejections, more appeals are being filed with Medicare’s administrative contractors. The government pays the contractors to handle the appeals, and Medicare’s Sutton acknowledged that the agency has “accounted for potential changes in the volume of Medicare appeals because of the WISeR program and its associated costs.”

Eighty-four percent of commercial insurers already use AI tools, according to a survey released in 2025 by the National Association of Insurance Commissioners, though they have consistently said AI isn’t used to deny prior authorization requests.

Its use in Medicare risks introducing friction and frustration into the program — and piling costs onto its beneficiaries. Prior authorization saves money for insurers partly by making patients pay a price in wait times and inconvenience, said Miranda Yaver, a University of Pittsburgh health policy researcher studying the technique.

“People will end up getting ensnared in a lot of red tape, having to be on hold, and getting rerouted,” she said. She often wonders whether prior authorization simply shifts costs to patients and doctors, rather than saving them.

Some doctors involved in Medicare’s prior authorization experiment believe it will inevitably expand beyond a few services officials in Washington consider fraud-prone.

“Everybody knows that if this pilot project works, it will be prior auth for basically all procedures,” said Mary Clarke, a family practice physician in Stillwater, Oklahoma. “If they can show that they can save money, then that’s going to be extrapolated and rolled out to other procedures and multiple other things in other states.”

When asked whether CMS is considering expansion of its prior authorization pilot, Sutton said in his statement that there are “currently no changes” considered for the list of services subject to the WISeR program, “but CMS continues to assess whether any changes are warranted.”

Do you have an experience with prior authorization you’d like to share? to tell Ñî¹óåú´«Ã½Ò•îl Health News your story.

Ñî¹óåú´«Ã½Ò•îl Health News Southern correspondent Lauren Sausser contributed to this report.

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

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

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

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

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

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

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

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

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

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

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

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

“Government has to intervene, because healthcare is run like an unregulated utility,” he told Ñî¹óåú´«Ã½Ò•îl Health News.

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

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

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

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

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

However, all five hospital systems were below the voluntary benchmark when doctor services were wrapped into the overall score. This finding illustrates how prices for doctor visits may obscure overall hospital prices by bringing down the average, researchers and lobbyists for employers told Ñî¹óåú´«Ã½Ò•îl Health News.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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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