Nearly half of that money is , to be distributed by county commissioners and city councilors. The idea is that local leaders know their communities best and can do justice to these payouts, often described as “blood money” by people who’ve lost loved ones to an overdose.

But many local leaders have little to no training in addiction policy and may lack robust local health departments and policy guardrails to assist them.

That has resulted in spending decisions that many clinicians, researchers, and addiction recovery advocates say are unlikely to save lives or treat substance use disorders.

In New York, where is directly controlled by local governments, counties have spent tens of thousands of dollars on surveillance cameras, technology to help police access data on locked cellphones, and goggles that simulate being drunk, according to public records obtained by the nonprofit advocacy group and shared exclusively with ºÚÁϳԹÏÍø News. Though the purchases were likely legal, many people consider them a slap in the face because they don’t directly help people struggling with addiction or their families.

Without oversight, counties have the chance “to go rogue” with this money, said , director of drug policy at VOCAL-NY, an advocacy organization that is tracking settlement money as part of its mission to serve people affected by the war on drugs.

When advocates and families of overdose victims raise concerns to the various state agencies that could hold localities accountable, those agencies often punt to one another, Budnella and other local advocates said.

It feels “like the where it’s like everybody’s pointing at each other,” Budnella said. “Somebody needs to be able to have the stick and slam their hand on the table and be like, ‘You’re doing this wrong and this is the consequence.’”

The experience in New York provides a microcosm of regulators evading oversight responsibility nationwide while varied interests vie for the financial windfall.

Years of data collected by ºÚÁϳԹÏÍø News, the Johns Hopkins Bloomberg School of Public Health, and the addiction nonprofit Shatterproof have found that settlement money was spent on law enforcement gear, such as night-vision goggles and bulletproof vests; unproven prevention initiatives, such as a drug-awareness magician for kids; and budget stopgaps.

It’s unclear who should — or will — take action on such expenditures that many people harmed by the crisis consider questionable.

In each state, control of the money is split among various entities, creating a leadership vacuum. The federal government . Advocates and families who’ve lost loved ones have pushed for accountability but have limited power. A few states have passed new laws, but change is slow and uneven.

The require the majority of the money to be spent on “opioid remediation,” with . But the list is broad and open to interpretation. Further complicating the issue, many states — including New York — designate some portion of the settlement dollars as unrestricted, which allows for general spending.

Meanwhile, federal budget cuts have threatened addiction-related services and created more demand for funding. And though overdose deaths have decreased since , they still claim about 186 lives per day.

“We really are wasting this opportunity to use these funds to turn the epidemic around,” said , a Binghamton, New York, resident, whose 28-year-old son, Jeff Dugon, died of a heroin overdose in 2014.

He was a chef who loved to rib Pleus about her bad knife skills. She thinks of him and smiles every time she peels garlic the way he taught her. If the money could spare other families such heartache, that would give her solace.

“We need oversight,” said Pleus, who runs a nonprofit that is receiving opioid settlement cash from her county to serve people who use drugs and provide support groups for families.

In New York, there are three prime watchdog contenders: the Office of Addiction Services and Supports, the attorney general, and the comptroller.

The Lead State Agency

New York’s opioid settlement documents designate the as the “.”

It distributes a portion of settlement dollars via grants, according to recommendations from the state’s . It also has the power to “engage in oversight and audits of projects and programs” funded by settlement cash and “may withhold future funds” from local governments that do not comply with certain requirements, according to the agreement.

Agency spokesperson Jerry Gretzinger told ºÚÁϳԹÏÍø News the office has not yet exercised its power to withhold funds but understands its oversight role.

“OASAS has a duty to ensure these funds are used responsibly and strategically to build programs that will have a lasting impact in reversing this crisis,” Gretzinger wrote in a statement.

The office is currently auditing 19 local governments’ use of the money to ensure compliance with “reporting and recordkeeping requirements,” he said. However, that may not encompass the broader question of whether money was spent on appropriate uses, which many advocates want addressed.

Some people are frustrated with the narrow role OASAS has carved out.

For example, required local governments for the first time to publicly report how they spent settlement money. OASAS on its site. But it does not review the accuracy or detail of that data, instead relying on “the information as it is provided” by localities, Gretzinger said.

“That doesn’t feel like oversight,” said , a deputy director at the Legal Action Center, which obtained public records about local spending in New York.

Members of the state’s Opioid Settlement Fund Advisory Board have also to provide more data and evaluation of how dollars are being used. But at a , OASAS Commissioner Chinazo Cunningham deflected.

“OASAS has no oversight over these portions of dollars,” she said of the 46% of settlement money that goes directly to counties and cities. “In terms of what kind of data each county collects,” she added, “we cannot dictate exactly what that information is.”

Click for Examples of spending decisions Local Spending That’s Fueling Calls for Oversight in New York

To uncover how opioid settlement cash is being spent, the nonprofit advocacy group filed public records requests with 56 New York counties and New York City, all of which are to disburse as they see fit.

Many of the responses showed spending on addiction treatment, recovery, and prevention initiatives that researchers and clinicians agree are a good use of money. Others surfaced questionable expenditures.

, for example, showed $150,000 in settlement cash directed to “Sheriff Jail” with no further description. The county did not respond to repeated inquiries for more details.

Sullivan County spent more than $30,000 on Cellebrite technology, used to extract data from cellphones, and more than $37,000 on Tasers. Though county officials didn’t respond to requests for comment, explained that those purchases came from unrestricted funds.

Such justifications rankle some families affected by the crisis, who say even if there aren’t legal restrictions on those dollars, there should be moral ones.

“Anything that is not directly tied to people who are struggling with opioid addiction or the loss of someone is a poor use of funds,” said , who lost a son to an overdose and now runs a nonprofit aimed at helping families dealing with addiction. Her organization has received settlement funds from Broome County, New York.

Records also revealed that many jurisdictions have yet to spend a significant portion of their money — a other .

Local officials say thoughtful planning takes time. But some advocates suspect ulterior motives. Millions of settlement dollars in bank accounts can generate sizable interest.

In March, it came to light that Nassau County had in interest accrued from unused opioid settlement funds to the county’s general fund, where it could be used for any purpose. County officials didn’t respond to requests for comment. The money was following public backlash.

Advocates suspect such attempts are happening elsewhere but are difficult to identify within complex budgeting documents.

It feels like “it’s up to us all — the organizers, the advocates, the service providers” — to be constantly watching, said , director of drug policy at the advocacy organization VOCAL-NY. “It’s frustrating.”

That’s why state agencies are being called on to step into an oversight role.

The Top Law Enforcement Officer

New York has been one of the leading national voices on prosecuting pharmaceutical companies that fueled the overdose crisis. Her office has issued on the topic, touting her role in securing billions of opioid settlement dollars for the state.

But when asked about the attorney general’s role in ensuring this windfall is spent appropriately, her office passed the buck to other agencies.

“While our partners in state and local governments distribute and oversee these funds, we will continue our work to hold accountable the companies responsible for fueling the spread of addictions and overdoses,” spokesperson Grant Fox wrote in a statement.

That stance contrasts starkly with many people’s views of the office’s responsibility.

A state senator, a member of the opioid settlement advisory board, and several advocates named the attorney general’s office as a key enforcement entity.

“The money is here because of their efforts,” said Democratic state , who chairs the committee on alcoholism and substance use disorders and has introduced of related to settlement funds. “I believe it is under the Office of the Attorney General to enforce.”

Budnella, the advocate with VOCAL-NY, agreed, saying, “It would be a shame for all of their work that they have done to secure all this funding for it to be misspent.”

Attorneys general in and have taken more active roles, issuing lists of ways opioid settlement money cannot be spent. The lists include many law enforcement expenditures that have raised concerns for advocates in New York.

James’ office did not respond to a specific question about whether she’d consider creating a similar list.

The Fiscal Watchdog

Some people have suggested that the state comptroller, as a steward of New York’s finances, could play an oversight role, perhaps by conducting or requiring audits.

Early this year, the Reason Foundation, a libertarian think tank, that would create audit requirements for organizations receiving settlement cash. The blueprint suggests recipients of more than $1 million in opioid settlements be required to undergo an independent review of financial statements and transaction testing to determine whether funds were used for their intended purpose. Smaller grantees, receiving less than $1 million, could simply provide an unaudited accounting of the funds.

It’s “not telling states what is and what isn’t an appropriate use,” said , a co-author of the Reason Foundation plan. “We’re simply trying to ensure recipients follow through with their promises.”

No state has adopted the model law yet. But the office of New York told ºÚÁϳԹÏÍø News it is already conducting an audit.

The process, which began in February, “is looking at OASAS’ oversight” of the opioid settlement money, said spokesperson Mary Mueller. It includes settlement money controlled by the state and local governments.

Mueller said any future enforcement action “will depend on the results of our current work and our ongoing monitoring.”

The office is following in the footsteps of comptrollers and auditors in , , and , Tennessee, who have taken action on settlement cash.

These initial steps have given some advocates and researchers hope for the future of opioid settlement dollars, which are expected to flow for more than a decade.

“We’re already years in and we’ve seen the craziest stories” of this money and a , said , a co-author of the Reason Foundation’s model law. “If we can prevent that at least a little and have these funds be a bit more focused, I don’t think it’s too late.”

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Meanwhile, patients, their advocates, and clinicians say little has improved.

“It has never been this bad for patients,” said U.S. Rep. Greg Murphy (R-N.C.), a physician who co-chairs the GOP Doctors Caucus.

The overarching intent of the June 2025 pledge was to improve a controversial process called prior authorization, which regularly requires patients or someone on their medical team to seek approval from insurers before proceeding with treatment.

According to AHIP, the health insurance industry trade group, health plans have eliminated 6.5 million prior authorizations for patients — equal to an 11% reduction — since the announcement.

But critics remain skeptical. Sally Nix, a patient advocate who has a chronic disease, described the voluntary pledge as “performative.” And Murphy, who participated in the news conference with Health and Human Services Secretary Robert F. Kennedy Jr. announcing the pledge last year, said it has “no teeth.”

Voluntary insurer pledges rarely make things better for patients, said , a research professor at the Center on Health Insurance Reforms at Georgetown University.

“In the absence of clear rules, policies, standards, and mandates,” she said, insurance companies are “going to do what makes sense for them to do financially.”

The Department of Health and Human Services did not respond to questions for this report. It isn’t clear how, or whether, the Trump administration is holding insurers accountable.

‘Zero Faith’

Prior authorization — sometimes called preauthorization or precertification — has been around for decades. The insurance industry has long argued that the practice, which varies by company, helps control costs, reduces waste and fraud, and prevents potential harm to patients. It’s regularly invoked for a huge swath of services, ranging from low-cost urgent care to expensive cancer treatment.

“Prior authorization is a vital patient safeguard,” said Chris Bond, a spokesperson for AHIP.

The 2024 killing of UnitedHealthcare CEO Brian Thompson sparked a national groundswell of anger about insurance denials, with patients and doctors becoming increasingly vocal about the tactics they say insurance companies use to boost profits at the expense of care.

Prior authorization reform is one of the rare healthcare issues Democrats and Republicans tend to agree on. On July 15, the House Ways and Means Committee unanimously that would force Medicare Advantage plans to provide to the federal government a list of all items and services that are subject to prior authorization, and to report data about denials and grievances, among other requirements.

Last year’s industry pledge was organized as a direct response to public anger, Mehmet Oz, administrator of the Centers for Medicare & Medicaid Services, said when it was announced. “There’s violence in the streets over these issues,” he said.

“Americans are upset about it,” Oz said, later adding, “I’m looking forward to seeing the results.”

Mike Gartner, founder of Health Access Innovation, an organization that helps patients overturn insurance denials, said he doubts that insurance companies are changing their policies in meaningful ways. The 11% reduction in prior authorization cited by AHIP “hides a lot of nuance,” Gartner said.

Patients who need the costliest services, such as cancer treatment, are still being disproportionately denied access to doctor-recommended care, he said.

AHIP said its data included reductions in prior authorization for medical services, not prescription medicines. The trade group didn’t provide details explaining which services have been dropped from prior authorization or how those reductions differ across individual insurers.

Last year, Oz said the federal government would be “evaluating progress” toward the pledge and “driving accountability,” and he foreshadowed “public dashboards.” But no such dashboards exist, and federal officials did not respond to questions about how they’re holding companies accountable.

Murphy, the North Carolina congressman, said he has “zero faith” in the industry policing itself.

He didn’t believe insurance companies then, he said, “and I don’t believe them now.”

‘At War’ With an Insurer

In February, days after Betsy Adler and Justin Young’s daughter Coco was born with a serious heart defect, the Stillwater, Minnesota, family received paperwork showing they were racking up out-of-network costs.

During Adler’s pregnancy, the family had switched insurers, , which is based in Minnetonka, Minnesota, and one of that initially signed the industry pledge. Adler said she’d checked with her employer’s human resources department and on Medica’s website to make sure her maternal-fetal specialists and hospital were in-network before their new health plan went into effect earlier this year.

But then, the insurance company started processing some claims as out-of-network. By mid-March, the family had accrued more than $4,000 in out-of-network charges, on top of more than $3,000 for in-network bills. And the bills kept coming.

When Adler, a psychotherapist, called to figure out what was going on, she said, an insurance company representative said she hadn’t submitted a referral from her primary care provider beforehand. Attempts to fix the problem went nowhere. At one point, Adler said, Medica required her to visit a clinic she’d never been to before to obtain a referral. But she said a Medica representative told her the referral was never received, because the insurer’s fax machine was down.

“I have a critically ill child,” Adler remembered thinking shortly after Coco was discharged from the cardiovascular intensive care unit. “I can either spend my emotional energy at war with Medica, or I can let it go and just enjoy my time with my daughter.”

Medica spokesperson Greg Bury said he wouldn’t discuss the case, citing patient privacy rules. In an emailed statement, he wrote the company is “committed to working with her to ensure she understands what is covered under her benefits and our responsibilities.”

One of six specific promises all insurers made when they signed the pledge was to honor a 90-day grace period when patients switch insurance plans, starting Jan. 1 of this year. Often called “continuity of care,” this grace period allows patients to temporarily continue receiving services and medications that were authorized under a previous insurer.

But that applies only in some circumstances, Georgetown’s Corlette said. The wording of the pledge suggests that insurance companies aren’t obligated to honor another company’s network parameters. When Adler and Young switched insurers, for example, Medica was not obligated to cover the cost of out-of-network providers as if they were in-network, even though they were in-network under the family’s old plan.

Adler and Young switched insurance companies again when Coco was a month old, to avoid accruing more out-of-network costs.

Denial After Approval

The percentages cited by AHIP don’t tell the whole story, said Nix, the patient advocate. Insurers are “not including the data for the loopholes they create,” she said.

For example, nothing in the pledge prevents insurance companies from retroactively denying payment, even when care is preapproved. “Patients are going to see a lot more retroactive denials,” said Nix, who recently had her insurer process, then later deny, a claim for injections to relieve her nerve pain.

Something similar recently happened to Jocelyn Austin, 49, of Amherst, New York. Over the course of nearly 20 years, she developed an addiction to sleeping and anxiety pills prescribed to her by a doctor. Last year, she spent weeks at an inpatient treatment center for substance abuse. Her insurer, Independent Health, had approved the admission. Austin said she has been substance-free since her discharge.

But the facility sent her a bill for more than $12,000 in December showing her insurer had not paid for the treatment she received, according to documents Austin shared with ºÚÁϳԹÏÍø News. This was in addition to the $10,000 she paid at the beginning of her treatment to satisfy her out-of-network deductible. The approval letters from Independent Health had specified that “authorization is not a guarantee of claim payment.”

Frank Sava, a spokesperson for Independent Health, said a denial was issued and upheld in this case because the services provided “were inconsistent with the care that was authorized” and “the medical record did not sufficiently support what was billed.” He said those findings were reviewed and confirmed by an outside consultant.

An explanation of benefits issued by the insurer last summer indicated the “provider,” not the patient, was responsible for the cost of her treatment. And yet the treatment facility has continued to pressure her for payment, she said.

Austin, who has not paid her outstanding bill, said insurance companies “should be held accountable.”

‘Significant Work Ahead’

Another one of the six commitments insurers made last year was to adopt new technology that would standardize the electronic submission of prior authorization requests. During the news conference announcing the pledge last summer, Chris Klomp, the director of Medicare and a deputy CMS administrator, said more than 50% of prior authorizations are still paper-based and processed by phone or fax machine.

In April, AHIP related to that technology initiative, explaining that participating insurers would adopt the new standards on a rolling basis. Health insurers agreed to implement the pledge’s various commitments by predetermined deadlines, and this initiative is scheduled to be operational by Jan. 1, 2027. But eight insurers that initially signed the pledge last year didn’t sign the technology update when it was announced in April, AHIP told ºÚÁϳԹÏÍø News.

Those insurers are Alignment Health Plan, EmblemHealth, HealthFirst, Independent Health, Medica, MVP Health Care, Point32Health, and SummaCare. Their beneficiaries span the country, from California to New York. None of those eight insurers agreed to interviews for this report, but most sent ºÚÁϳԹÏÍø News emailed statements indicating that they remain committed to prior authorization reform.

AHIP’s approach to continuity of care “would have required the transfer of confidential member health information through a non-standardized process involving third-party participation,” wrote Jerry Slowey, a spokesperson for , which offers Medicare Advantage policies in Arizona, California, Nevada, North Carolina, and Texas. “We do not believe that level of data sharing was contemplated in the original commitment.”

Bury, the spokesperson for Medica, which covers beneficiaries in Iowa, Kansas, Minnesota, Missouri, Nebraska, North Dakota, Oklahoma, South Dakota, and Wisconsin, said the company “supports the goal of these standardization efforts.” But the April update “raised a significant technical and operational hurdle that we are not able to commit to at this time,” he said.

Alex Gomez, a spokesperson for EmblemHealth, said in late June the company “will sign onto the commitment” after ºÚÁϳԹÏÍø News posed questions about why it had not endorsed the April update.

“We anticipate more plans will be added over the coming months,” said Bond, the AHIP spokesperson. Health plans are “working continuously to implement their commitments to simplify and improve the experience.” He acknowledged that “there is still significant work ahead.”

The original pledge also included a promise that insurance companies would enhance transparency and use “clear, easy-to-understand explanations” when communicating to patients — something they were already supposed to be doing under the Affordable Care Act.

Yet companies still regularly neglect to explain why care has been denied, and their communications often contain “inconsistent and contradictory information,” said Gartner, of Health Access Innovation. He and Murphy also said they suspect insurance companies are increasingly using artificial intelligence to generate denials.

“They craft the pathways to basically deny things immediately with the hope that people will give up,” Murphy said.

The congressman said he wishes President Donald Trump would sign executive orders addressing some of these issues. “The problem is the insurance industry is the strongest lobby in this town.”

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

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Now she worries the cost of those drugs could rise — not because of price increases, but because of a tax system revamp put on the ballot by the state’s Republican-dominated legislature and backed by the Republican governor.

Prescription drugs and doctor visits are currently exempt from taxes in the state. But in August, Missouri voters will weigh in on a proposed constitutional amendment to give the legislature the power to replace the state’s income tax with expanded sales taxes, including on goods and services currently exempt.

“Politicians want Missourians to trust them when they say not to worry about our medications and healthcare being up for grabs,” Ortbals said at a June press event organized by Progress MO, a progressive advocacy group.

“I have spent enough time in Jefferson City to know better,” said Ortbals, who works for a Democratic state legislator but was speaking in her personal capacity. “I have watched them speak about protecting life while making lifesaving healthcare less accessible.”

Taxes on healthcare are unusual in the United States but not unprecedented. Most states over-the-counter drugs. Illinois, Missouri’s neighbor, prescription drugs. Delaware, Hawai‘i, New Mexico, and Washington all on services by physicians, dentists, out-of-hospital nursing providers, and medical laboratories.

Critics of the amendment to eliminate income tax in Missouri say it’d be difficult to make up the lost revenue without also imposing taxes on healthcare. Nearly two-thirds of the state’s general revenue budget comes from income taxes, about $8.7 billion in 2026. Failing to make up that revenue could lead to steep cuts in state services.

The proposed tax cut comes at an already precarious time for the state budget. Missouri Gov. Mike Kehoe in spending in this year’s budget over concerns of lagging revenues. The state legislature has passed a since 2022, including . Federal covid aid has propped up the budget in recent years, but the that the surplus is dwindling. And the state is projected to in federal Medicaid funding over 10 years due to cuts from President Donald Trump’s signature One Big Beautiful Bill Act.

Proponents of the Missouri income tax proposal, such as of the Show-Me Institute, a conservative think tank, say the cut would in the state, both of which have been flat in recent years. He doubts healthcare would be among the things subject to sales tax. But even if it were, he said, it could be done in ways that wouldn’t target lower-income residents. New Jersey, for example, (excluding reconstructive surgeries), which tend to be performed on wealthier people.

In a statement to ºÚÁϳԹÏÍø News, Kehoe spokesperson Gabby Picard said the governor “will never support extending sales taxes on agriculture, healthcare, or real estate,” noting that the legislature would have to decide what to exempt if the ballot measure passes.

Federal law already prohibits states from imposing taxes on many healthcare services covered by government programs such as Medicare, the federal health insurance program for seniors, and Medicaid, the joint state-federal health insurance program for people with low incomes or disabilities, Picard wrote. More than were insured through those two programs in 2024.

But Jay Hardenbrook, advocacy director for AARP Missouri, argued that raising taxes on healthcare, real estate, and agriculture is the for the amendment, considering the legislature doesn’t need special permission to cut income taxes. He cautioned that because the amendment opens the door to new taxes on anything, it could unleash a “weird feeding frenzy” with special-interest groups lobbying for exemptions.

“Let’s say we do protect prescription drugs from a tax increase; does that mean that the cost of food goes up?” Hardenbrook said.

And if the Missouri measure passes and the legislature exempts healthcare and real estate from new taxes, Hardenbrook worries about cuts to state-funded services like home and community-based care.

“When I talk about taxes going up, and the price of every good and services going up, that’s the best-case scenario,” Hardenbrook said. “The worst-case scenario is that the income tax just goes away, and we just don’t have the money to do the things that we need to do.”

have no income tax, and Washington taxes only capital gains, but of the Institute on Taxation and Economic Policy, a progressive think tank, said the way Missouri is going about its elimination is nearly unprecedented. Only Alaska has repealed a broad-based personal income tax that had previously accounted for a significant portion of the state budget, Davis said.

“The situation in Alaska was they struck oil, and they had this gusher of economic activity and tax revenue that resulted from that,” Davis said. “Missouri has not struck oil.”

A 2012 tax cut in Kansas that reduced income taxes for individuals and eliminated them for some types of businesses created a large budget hole, prompting lawmakers there to the cuts five years later.

Tsapelas of the Show-Me Institute said Missouri’s income tax elimination wouldn’t happen overnight but would instead be more akin to in the state: phased in and tied to revenue targets that would shield the state from massive budget gaps.

“It’s not as doom and gloom as some people are worried about,” Tsapelas said.

But Ortbals, the healthcare advocate, said too many Missourians are already delaying medical care because of costs.

“I want a Missouri where young people can afford to stay, where families can afford to grow, where chronic illness does not become financial ruin,” Ortbals said.

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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.”

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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“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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More and more Americans are being exposed to these parasites as climate change expands the range where they can survive. That means more people are also exposed to the bevy of health conditions they can cause, such as Rocky Mountain spotted fever, the alpha-gal-triggered red meat allergy, and, most common of all, Lyme disease.

For the latter, there may be some additional protection on the horizon. Pharmaceutical companies Pfizer and Valneva they plan to seek regulatory approval for a vaccine to protect against Lyme disease. A for Lyme became available in the late 1990s but was pulled only three years later due to lawsuits, public fear of side effects, and a lack of interest.

It’s unclear whether this latest stab at a Lyme disease vaccine will get a warmer reception if it’s approved, especially in the postcovid era of vaccine skepticism.

For a sense of how it might go over with rural populations at high risk of Lyme, ºÚÁϳԹÏÍø News spoke with a group of hunters.

Few people spend more time in the woods exposed to ticks.

At the same time, as a collective, hunters , according to a survey from the Theodore Roosevelt Conservation Partnership. And these are identities increased or vaccines, according to Ashley Kirzinger, associate director for Public Opinion and Survey Research at KFF, a health information nonprofit that includes ºÚÁϳԹÏÍø News.

At the same time, few people spend more time in the woods exposed to ticks and the possibility of Lyme disease.

Left untreated, Lyme can cause a , from fevers, chills, and headaches to arthritis, shooting pains, and inflammation of the brain and spinal cord, according to the Centers for Disease Control and Prevention. About in the U.S. may be diagnosed and treated for Lyme disease each year, the CDC says; that’s at least in part because the where cases have been reported has “expanded significantly” since 1995.

So would hunters get the Lyme vaccine if it became available?

“Given my proclivity for the outdoors, absolutely,” said Jess Manganelli, one of seven hunters (and one hiker) who spoke with ºÚÁϳԹÏÍø News on a recent Saturday at the Busch Shooting Range in Weldon Spring, Missouri, just outside of St. Louis.

Of the eight, Manganelli, who had been hunting turkeys the weekend before, was the most positive toward the vaccine. Six others said they would consider it but would want more information about its safety and effectiveness as well as their risk for contracting the disease.

But Manganelli was the only one who believed she may have previously contracted Lyme disease, although she was never formally diagnosed with it. Two years ago, she experienced muscle weakness, tiredness, fatigue, swelling, and headaches after a tick bite, but when she went to urgent care she was told they didn’t test for Lyme.

Nearly all the hunters knew someone who had had Lyme disease — an old roommate, a family member, friends, a former student. Lyme can be and to treat and is often misdiagnosed at first. Many of the hunters witnessed their acquaintances navigating those challenges and struggling with sometimes debilitating symptoms.

That familiarity among the hunters in Missouri was unsurprising to author and conservationist Steven Rinella, host of the hunting show MeatEater.

“I’m a turkey hunter. In talking about turkey hunting, you talk about ticks as much as you talk about turkeys,” Rinella said. “Just the nature of turkey hunting puts you into exposure. You’re sitting for long periods of time trying to use vegetation for concealment.”

In fact, both Rinella and his older son contracted Lyme disease 13 years ago during a bluegill fishing trip in the Hudson Valley in New York. His son developed Bell’s palsy, a sudden paralysis on one side of the face, but recovered quickly after a course of oral antibiotics. Steven Rinella’s symptoms, on the other hand, lingered for months, leaving him unable to walk down stairs without a handrail or to ride a bike. He ended up receiving intravenous antibiotic treatments for a month.

“I thought my life had changed,” Rinella said, “but I recovered, as far as I know.”

That experience is one reason Rinella said he would absolutely consider getting a Lyme vaccine if it proved safe and provided considerable protection against the disease. Unlike with some other diseases, prior infection does not provide permanent immunity, so a person who has had Lyme could still benefit from a vaccine.

Knowledge of similar challenges influenced the thinking of the hunters in Missouri as well.

Jeremy Hollingshead said he may be less inclined to take a vaccine owing to his former roommate’s experience with Lyme disease, which is not to say the experience was pleasant. In fact, Hollingshead said he thinks his old pal is still dealing with lingering effects of it 10 years later. But Hollingshead has spent his whole life in the woods, and of hundreds of people he knows who have done the same, he knows of only one of them contracting Lyme.

“I know it was a bad outcome for him,” Hollingshead said, but he thinks the odds of getting Lyme himself seem pretty slim.

Meanwhile, Julian Barnes said seeing a relative struggle with Lyme makes him more open to a potential vaccine. It took a long time for doctors to come to that diagnosis, and finding a good treatment has been equally difficult.

“I would say I am vaccine-hesitant, generally speaking,” Barnes said. “But Lyme, I’ve seen the way it affects people in my life.”

“I would definitely have to really understand the vaccine, how it works,” Barnes added.

The new, four-dose vaccine candidate technically missed one of the bars set out in trials because Lyme. Still, the companies say it’s about 75% effective in reducing cases, and they plan to submit it to regulators for approval. A Pfizer spokesperson said there were no updates to share on the company’s regulatory efforts when contacted by ºÚÁϳԹÏÍø News in June.

Health and Human Services Secretary Robert F. Kennedy Jr. was a noted anti-vaccine activist before taking over as head of the agency that oversees vaccine approvals, and he’s remade it in ways that have prompted some vaccine makers to on development.

But he’s also been an advocate on Lyme disease. In May, he announced an . And during his Senate confirmation hearings, he said his family had been deeply affected by Lyme disease and that than he would to find a vaccine or treatment.

If the vaccine is approved by the FDA, an endorsement from Kennedy would go a long way, according to KFF’s Kirzinger, particularly among supporters of his Make America Healthy Again movement, who tend to be more vaccine-skeptical.

“They trust him as much as they trust their own doctors to tell them what to do with their health and for health information,” Kirzinger said. “If he comes out as a strong proponent of this vaccine and says, ‘Look what my administration did, and we made this available,’ I would imagine there would be less vaccine resistance among that group.”

Kirzinger also said this vaccine could be ripe for misinformation. New polling from KFF shows people who don’t have a trusted medical provider as well as those who use social media and AI for health information are common vaccine myths.

Only one of the hunters who spoke with ºÚÁϳԹÏÍø News said they definitely would not be interested in a Lyme vaccine if it became available.

“I kind of hand it off to God and the body he gave me. I’m pretty durable,” JP Cummings said. But even while he’s not interested in it for himself, he’s curious to see what his fellow hunters do as more information comes out.

“Hunters care about the wildlife; hunters care about health,” Cummings said. “They love the wildlife, they love their deer, and they love their fellow hunters.”

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

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

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

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

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

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

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

States Stare Down Reporting Deadlines

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

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

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

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

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

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

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

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

Upgrading Technology, Modernizing Rural Health

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

ºÚÁϳԹÏÍø News senior correspondent Phil Galewitz and rural health care correspondent Arielle Zionts contributed to this report.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“I work very hard,” Meyer said.

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

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

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

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

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

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

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

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

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

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