“All nonspeakers above the age of 5 should be given the opportunity,” typed Bonker, who is 28 and cannot talk. Her mother, Virginia Breen, held a wireless keyboard for her. They sat on a hotel patio before an April 27 meeting with a senior aide to Health and Human Services Secretary Robert F. Kennedy Jr.

“We are misunderstood and underestimated,” Bonker typed, occasionally humming or lightly groaning as she considered where to place a slender forefinger on the keyboard.

Assisted spelling is used to help nonverbal people communicate by pointing to letters on boards or using keyboards with physical help from another person.

Supporters say assisted spelling has improved the lives of thousands of people with autism, such as Bonker, and they have powerful allies. Kennedy appointed Bonker and another autistic “speller,” as they call themselves, to a 20-member autism panel made up largely of parents with children whose autism they attribute to vaccinations.

At the reconfigured panel’s first public session on April 28, three other members said their nonspeaking adult children were learning to communicate through spelling. The panel issued a resolution with  stating that “robust” communications programs are essential for autistic people. Bonker has urged the Department of Health and Human Services to support training in assisted spelling for those who want it.

But leading for , as well as those representing and , that these methods — premised on the idea that people with autism have the normal range of cognitive powers but are imprisoned in malfunctioning bodies — are flawed or fraudulent.

Other, validated methods enable nonspeakers to communicate through digital and analog pictures and letter boards. But assisted spelling isn’t autonomous communication, critics say: Consciously or not, the board holder may be influencing or responsible for the typed or pointed-at words — as with a Ouija board.

For many parents in Kennedy’s Make America Healthy Again community, the spelling controversy is angrily ringing the same bells as the notion that vaccines cause autism — which they refuse to consider debunked. As some people see it: Established medicine damaged them with vaccines and now refuses to accept a helpful treatment.

People with autism are “trapped in bodies that have betrayed them because the medical establishment has betrayed them,” said Louis Conte, who has a child with autism, in a of a Kennedy-allied MAHA publication.

By limiting access to spelling, “you are not just limiting expression, you are erasing identity,” said Katie Sweeney, the mother of an autistic adult who is affiliated with an anti-vaccine , at the autism panel meeting.

Mainstream autism experts and advocates in March convened the Independent Autism Coordinating Committee as a counter to Kennedy’s panel. At the new group’s meeting, one member spoke out against the spelling methods.

“In this underfunded disability environment, I don’t want a single penny diverted to debunked interventions like spelling,” said , a senior lecturer in history at the University of Pennsylvania and an who described her 27-year-old son as “profoundly autistic.”

It’s not only a waste of time, she said later in an interview, but “people subjected to spelling are not given access to evidence-based education. Every interaction turns someone like my son into a puppet, and I find that very objectionable.”

A Patchwork of Perspectives

The universe of autistic people, their parents, researchers, advocates, and service providers is a broad, acrimonious spectrum. Some say that vaccines or chemical exposures caused a massive increase in autism, others that diagnostic changes account for most of the increase. Some seek mainstream or alternative treatments, some demand classroom inclusion, and others want residential treatment. Some people with autism say it’s a difference, not a disability.

“When I tell the parents of a young child they have autism, it’s a tragedy,” said Audrey Brumback, a child neurologist at Dell Medical School at the University of Texas-Austin. “When I give the same diagnosis to a teenager, it’s good news. It means, ‘There’s nothing wrong with you; you’re just autistic.’”

Scientific medicine has failed to deliver good treatments for autism. After four decades of concerted research, “the results have for the most part been very disappointing,” said David Mandell, a professor of psychiatry and pediatrics at the University of Pennsylvania.

Severely autistic children — those requiring round-the-clock care with ailments like epilepsy and generally lacking in verbal language — account for of all U.S. autism diagnoses. Caring for them may mean dropping careers and spending vast sums on therapy. “They ought to spell special education with a dollar sign,” said Tracy Simmons, whose 17-year-old son, Noah, has autism.

Many parents of autistic children have tried vitamins and diets that exclude wheat, soy, or dairy. Some have turned to hyperbaric oxygen chambers, others to pig hormones to repair damage spuriously attributed to measles-mumps-rubella vaccines, and infusions of metal-leaching chemicals to remove traces of heavy metals in childhood shots. Recent regimens include camel milk, broccoli extract, and stem cell injections obtained at great expense in Panama and India.

In September, the White House touted leucovorin, used in some cancer care and for an ultra-rare genetic condition. Marty Makary, then-commissioner of the FDA, said the drug could help 50% to 60% of kids with autism.

There’s little evidence behind any of these treatments, Brumback said. Many parents try multiple remedies at once; if a child’s condition improves, it’s hard to tell what worked — or whether the child simply grew out of a problem.

Noah the Speller

During a Zoom session in which he typed on a keyboard held by his mother, Noah Simmons wrote glowingly about the world opened to him by two years of learning to spell and type.

“Im a new person. I have friends, I write, climbing,” he typed. “Conversation. I can have one. I have a say. Im human now.”

Later, at an indoor climbing center in Gaithersburg, Maryland, Noah scrambled nearly to the top of the wall before he slipped. He glided down the rope and slapped a high five with his climbing instructor as his mother approached. She carried a laminated sheet with the alphabet on it.

Tracy Simmons held the paper while Noah stabbed at the letters one by one, ending with a flourishing swipe at the exclamation mark: “Im going to crush it again!”

There, and at a later keyboard session at home, Noah seemed in control. But when Tracy stopped offering verbal prompts and encouragement, or stopped holding the board, Noah often got lost and signaled a need for help.

Tracy Simmons acknowledges that whoever holds the board could be steering a speller’s words. Despite his climbing prowess, Noah lacks fine motor skills, is anxious, and has trouble controlling his body, she said.

“He’s working on becoming an independent typer. He can do it short amounts of time,” she said. “But at times he gets overwhelmed.”

The method used by Noah and his mother came into use in the United States in the early 1990s. At first, trainers guided the arms or hands of the spellers as they pointed to a letter board. The idea was that the intelligence or literacy of severely autistic people was trapped in bodies they couldn’t control. They needed help physically learning to spell, first with a pencil or finger pointing at stenciled or printed letters, and eventually by typing on a keyboard.

Within a few years, however, dozens of experiments had shown that the facilitators, not the autistic people, were doing the spelling. A that the spellers could identify words or objects without their facilitators.

In addition, the technique has resulted in — sometimes in the autistic person’s life skeptical of the spelling process.

Next came the Rapid Prompting Method, devised by Soma Mukhopadhyay, an Indian mother of a boy with profound autism, who brought her system to the United States in 2001. Elizabeth Vosseller, a speech pathologist in Herndon, Virginia, launched a nearly identical method, Spelling to Communicate. In both, the facilitator, not the speller, holds the letter board. But each method relies on prompts.

Mukhopadhyay and Vosseller, who did not respond to requests for comment, have each declined to submit their systems to the kind of testing that disproved facilitated communication. Bonker said calls for such tests show a lack of respect for the disabled.

Asked why, after 23 years as a speller, she couldn’t communicate alone or without her mother holding the board, Bonker typed, “I can do it in certain environments that don’t include interviews with strangers.” Severely autistic people need coaches to help control their anxiety, Breen said.

Another star of the speller world, Woody Brown, spoke through his mother with Jenna Bush Hager on the Today show on April 1. The Browns were promoting his novel, Upward Bound, which became an immediate New York Times bestseller after its March release. During the segment, Mary Brown spoke in complete sentences that she said came from Woody, but the letters he typed, as far as the program’s viewers could see, did not correspond to her words and often looked like gibberish.

This raised questions about how Woody Brown could be the author of what critics described as a brilliant, sensitive novel. They pointed out that Mary Brown has worked as a Hollywood script analyst. The Browns did not respond to efforts to reach them for comment.

“Spellers” are best known to the public through the success of The Telepathy Tapes, which briefly unseated The Joe Rogan Experience as the country’s most popular podcast early last year. In The Telepathy Tapes’ first season, people with profound autism were allegedly revealed as clairvoyant superhumans.

The evidence for their telepathic abilities was produced through spelling. The host showed spellers and facilitators two things, and the speller, with the facilitator present, typed out what the facilitator saw. Viewers had to wonder whether this was evidence of telepathy or confirmation of what critics have said all along: that the facilitator is the one controlling the words, often by feeding the speller subtle cues.

Bonker said she appreciated the Telepathy Tapes’ host for including her nonprofit group’s information on its website. As for telepathic skills, “I believe nonspeakers have many gifts,” she said. “And I believe what they say.”

The debate over spelling is playing out in boards of education and courtrooms, where parents of autistic children seek aid for their children’s spelling lessons.

In New York state in March, anti-vaccine on state Sen. Patricia Fahy, the Democratic chair of the disabilities committee, after she inserted language into a disability rights bill requiring that payments go to “verified” communication methods that assured patient autonomy.

Vikram Jaswal, a University of Virginia psychologist who works with spellers, said he’s seen people with severe autism who can type independently, though only a handful have that ability out of the couple of hundred spellers he’s met. More research is needed to figure out who can best benefit from the technique, he said.

Tracy Simmons believes in the method, and so does her son — assuming he’s in control of what he types.

On a recent morning, Tracy read aloud a beautiful escape-from-Alcatraz story she said Noah had written with her help and that of his spelling trainer. “He writes all the time in his head,” she said, but it could take years for her son to consistently type independently.

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

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

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

“My energy is really limited,” she said.

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

‘A Breakthrough Moment’

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

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

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

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

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

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

‘You Need A, B, and C’

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

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

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

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

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

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

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

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

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

Hotly Debated, Seldom Used

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

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

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

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

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

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

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

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

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

The New Old Age is produced through a partnership with .

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“I’m freaking out,” said Wood, who lives in a 1,700-square-foot home in Terryville, a village just outside Bristol, Connecticut. “I don’t understand it.”

Wood, 52, had weight loss surgery at Bristol Hospital in 2022, hoping it would help with her sleep apnea and the pain in her knees and back. Before scheduling the procedure, she checked with her insurer, she said, and was told the surgery would cost $5,000 out-of-pocket. She paid in advance.

More than six months later, Bristol sent Wood another bill that pushed the cost of her surgery to more than $17,000. Wood said she tried to dispute the charge. The hospital sued her.

“That’s ridiculous. I was told so many times by Aetna: ‘$5,000 out-of-pocket,’” Wood said. “I never would have had the surgery had I known it was going to cost almost 20 grand.”

Wood is among more than three dozen Connecticut patients the Connecticut Mirror and ºÚÁϳԹÏÍø News interviewed over the past year who were sued by their hospital or physician over unpaid bills.

The patients include teachers, small-business owners, a postal worker, a retired nursing home aide, a nurse, and a hotel bellhop. Most had jobs and health insurance. Nearly all said they wanted to pay what they owed.

Patients taken to court described baffling bills, confusing health plan rules, and frustrating and fruitless telephone calls to hospital billing offices and health insurers’ customer-service lines. Even when they tried to resolve their outstanding bills, many said they couldn’t get answers.

Their experiences encapsulate breakdowns in the healthcare system that trap patients in debt. Health insurance didn’t cover care for reasons they couldn’t understand. Several patients did not qualify for financial assistance from providers, despite modest incomes. If they committed to pay, patients were hit with liens on their homes or interest payments and court fees that piled new debt onto their medical bills.

The industry’s key players blame one another for a broken system. Providers say insurers’ saddle patients with massive bills even when they have coverage. Insurers say at rates that outpace inflation.

Meanwhile, patients are stuck with the fallout. In 2022, about carrying medical or dental debt.

“It’s bad enough that I have bad health and have to pay mountains of medical bills,” said Samantha Mantiera, whom Danbury Hospital sued in 2024 over $10,000 she said she was erroneously charged. “Then to constantly be dealing with incorrect bills and then a lawsuit on top of it took me over the top.”

Mantiera said she spent months trying to explain to the hospital and then a collection agency that her insurance statements indicated she owed just $260. She was sued anyway.

After Mantiera contested the lawsuit, Danbury Hospital withdrew it, court records show.

Mantiera said she and her husband now travel up to an hour from their Brookfield, Connecticut, home to avoid hospitals owned by Danbury’s parent company, now called Northwell Health.

Kathy Holt, who leads the state Office of the Healthcare Advocate, said that in the past several decades healthcare has only gotten harder for patients to navigate. The agency fields thousands of calls every year from residents looking for help with medical billing questions.

“I’ve talked to too many people who have just given up,” Holt said. “The system has been made so hard for them, and I feel like it’s deliberate.”

‘They Would Not Talk to Me’

Debt collection lawsuits against patients have declined in Connecticut since 2019, a CT Mirror-ºÚÁϳԹÏÍø News analysis of state court records found. And court records show most Connecticut hospital systems have stopped suing patients, including the state’s two largest systems, Yale New Haven Health and Hartford HealthCare.

Most hospitals stopped suing patients during the covid-19 pandemic as they reevaluated their collection practices, said Sarah Ginnetti, chief revenue cycle officer at UConn Health. The system ceased lawsuits in 2022, records show.

“In some of those circumstances, it just felt misaligned with our mission as an organization,” Ginnetti said. “For the small handful of cases that we might gain some type of legal victory, we really didn’t feel as though that would be our best path forward.”

Yale New Haven Health and Hartford HealthCare would not discuss why they stopped suing patients, instead issuing statements about their financial assistance programs.

Scores of medical providers — including physician groups, dentists, and hospitals — , data shows. The CT Mirror-ºÚÁϳԹÏÍø News analysis found more than 1,500 healthcare-related debt cases filed in Connecticut courts in 2024.

This included lawsuits by Bristol Health, an independent local health system that includes Bristol Hospital, and Nuvance Health, a chain of seven hospitals recently acquired by Northwell Health, a multibillion-dollar system based in New York.

Nuvance hospitals filed over 4,000 collection lawsuits from 2019 to 2024, records show. Over the five years, the health system accounted for more than a quarter of the roughly 16,300 medical debt collection lawsuits against patients identified in state court records.

Hospital officials and other medical providers say they try to work with patients who have trouble paying their bills. Nikki Schulz, chief revenue officer for Northwell’s Connecticut hospitals, said in a statement that years ago the system “eased” its collection practices, leading to a “precipitous decline” in medical debt referred to collections.

“We fundamentally retooled our approach to align with industry best practices,” Schulz said. Records show the health system sued about 200 patients in 2024, down from 2,200 in 2019.

Healthcare executives also say they have a responsibility to try to collect.

“I don’t have a choice,” said Bristol Hospital CEO Kurt Barwis. “What we’re trying to do is sustain a mission of taking care of this community.”

Bristol Health is one of Connecticut’s most financially strained systems, and executives are currently in talks with the administration of Democratic Gov. Ned Lamont about an . The proposed deal is, in part, an effort to keep the hospital afloat.

Barwis said the hospital has taken steps to help patients with unexpected bills, including enlisting financial counselors to reach out to patients before elective procedures to discuss cost and financial assistance.

But Wood, who was sued by Bristol, said no one from the hospital talked to her before her surgery. When she called the hospital after receiving the $12,000 bill, she said she was told there was nothing they could do because her insurance had denied the claim.

“They would not talk to me about it,” Wood said. “They wanted their money.”

Bristol spokesperson Albert Peguero also blamed Wood’s insurer and said the hospital worked with Wood as she went through numerous insurance appeals with Aetna.

Wood didn’t fare any better with Aetna. It turned out that her health plan covered only $15,000 worth of bariatric surgery, meaning she was responsible for any bills that exceeded that.

Aetna spokesperson Shelly Bandit said Wood had been notified of this provision, though Wood disputes this.

The back-and-forth with the hospital and the insurer enraged Wood. But after she was sued, she concluded she had no more options. She settled with Bristol, agreeing to pay the full balance on a payment plan of $150 a month, court records show. Under the agreement, it would take Wood almost seven years to pay off the debt.

Last year, Wood faced additional financial challenges after her mother died and her husband lost his job and was unemployed for six months.

Wood said she’s regained about a third of the 100 pounds she lost after her surgery because of the stress. Some months she pays Bristol less than $150. In January, the hospital placed a lien on her home.

“We don’t have savings. We don’t have the extra money. We’re living check by check,” Wood said. “We’re working-class people trying to make a living, trying to do the right thing. And we always get screwed.”

‘I Don’t Have Hours on End’

It’s difficult to know how many medical debt lawsuits arise from disputed bills. But most U.S. adults with healthcare debt say they’ve received a bill in the past five years that they thought contained an error, according to a .

The prevalence of disputed medical bills is one reason many advocates for patients say hospitals and other healthcare providers shouldn’t sue people they treat.

“Understanding insurance to begin with and then navigating denials or bills that are not plainly understood leaves patients stuck in an opaque system where they have the least leverage and power,” said Eva Stahl, a vice president of Undue Medical Debt, a nonprofit that has worked with states to buy and retire debt — including for more than 150,000 Connecticut residents.

“Patients understandably are left with questions and confusion,” Stahl said.

Timothy Bigham, who owns a construction company and was sued in 2023 by Danbury Hospital, said he never understood why he was billed more than $64,000 after he was hospitalized following a 2019 heart attack.

Bigham, who lives in Danbury, Connecticut, said he was insured at the time. But soon after he got home, Bigham began getting regular calls from the hospital. He was told his insurer wasn’t paying the bill because he refused to “release medical records,” he recalled.

“I had insurance when I had the heart attack, but it’s my job to get the insurance company to pay?” Bigham said. “I’m self-employed. I work in construction. I don’t have hours on end to sit on the phone trying to talk to somebody at an insurance company.”

Bigham said he ultimately “stopped dealing with it” because he didn’t know what else to do.

Then, in 2023, Danbury Hospital sued him. A judge dismissed the case in 2025, citing the hospital’s “failure to prosecute with reasonable diligence,” according to court records. But by then, the alleged debt had devastated Bigham’s credit score, tanking it by over 100 points, he said.

Northwell’s Schulz declined to comment on any specific patient cases, citing privacy laws.

Connecticut barring medical debt from consumer credit reports.

A handful of states have tried to protect patients from lawsuits through limiting when hospitals can pursue legal action. Illinois, for example, prohibits lawsuits against uninsured patients who prove they can’t afford their unpaid bills. Nevada, New York, North Carolina, Maryland, and Virginia prohibit liens and foreclosures for medical debt.

‘It Was a Nightmare’

Dominique Jean Pierre was equally surprised by the $20,000 bill he got after he was hospitalized at Norwalk Hospital with a urinary tract infection in July 2020.

Jean Pierre, 66, had worked for nearly two decades as a bellhop at a Hilton hotel in Stamford owned and operated by Atrium Hospitality, a Georgia-based company. When he got sick, the hotel was temporarily closed because of covid lockdowns.

What Jean Pierre didn’t realize, he said, was that the hotel had also cut off employee health benefits. He said he was told by the hospital that he’d be responsible for the bill.

“It was a nightmare,” he said.

Jean Pierre said he begged his manager for help but was told there was nothing the company could do. Atrium Hospitality did not respond to requests for comment.

Two years after Jean Pierre’s hospitalization, Norwalk Hospital sued him for more than $20,000, court records show.

Jean Pierre said he tried twice to apply for financial assistance, but the hospital told him he and his wife made too much to qualify, even though his medical bills totaled almost a quarter of their annual income of about $87,000.

With nowhere to turn, Jean Pierre settled with Norwalk Hospital, now part of the Northwell system, in 2025, agreeing to pay the full bill in $100 monthly installments, records show. At that rate, he will be paying off the debt until 2042.

After the settlement, he said, the judge encouraged him to reach out to elected officials to try to get the debt canceled. Jean Pierre was exhausted.

“He says to me, ‘You have to go to your senators. Go to the governor.’ I said, ‘That’s too much. [I’m just going to] let it go.’”

Jean Pierre has left the Hilton and now works as a personal care attendant, as does his wife. But he said it still nags him that businesses and healthcare providers received millions of dollars in government aid during the pandemic, while he was left with $20,000 in medical debt.

“They gave money for the hotel. They gave money for the hospital. They gave money for a lot of stuff,” he said. “But we don’t see none.”

‘I’m Not Trying To Run Away’

Other patients said they felt trapped, even if they tried to do the right thing.

Deneen Brown, who runs a small daycare out of her home in Norwalk, was sued by Norwalk Hospital in 2024 for $7,200 over bills she allegedly incurred “on or about 2019 and 2020,” according to the lawsuit.

Brown said she was stunned by the lawsuit, as she believed she’d had health insurance at the time. But as a small-business owner who took pride in maintaining good credit and staying on top of her finances, she said she committed to taking care of it.

“I’m not trying to run away from something that may be my responsibility,” Brown said. “If you say I owe it, I’m going to figure it out, and I’m going to pay it.”

In January 2025, she agreed to a nearly 13-year payment plan of $50 a month, court records show. Often she pays more, she said.

The following month, the hospital placed a lien on her home. Brown said she never realized the hospital would continue to penalize her, even after she agreed to a payment plan.

“Had I known that, I would have never settled,” she said.

This article was produced in partnership with , a statewide nonprofit newsroom that covers public policy and politics.

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

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

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

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

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

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

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

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

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

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She was in “reasonably good health,” and the risks of the procedure — bleeding, reaction to anesthesia, perforation of her colon — were fairly low. But she was 85. And she would need to briefly discontinue the blood thinners she took because of the cardiac stents keeping her arteries open; doing so could increase the risks.

Had Itzkowitz and his patient faced this decision five years ago, he might have scheduled the screening “without even thinking about it,” he said. But recent research has shown again that the benefits of a repeat colonoscopy .

Now, he said, “I’m saying to myself, ‘What are we accomplishing here?’”

He’s not the only doctor — or patient — having second thoughts. The risks and benefits of common screenings, procedures, and drugs add up differently at advanced ages, and research continues to point out fresh examples of some that may become unnecessary.

Recently, investigators have taken on questions about common skin lesions that probably don’t need to be removed, a widely used thyroid medication that many older patients can safely discontinue, and colonoscopies that reduce colon cancer mortality so slightly that the risks may outweigh the benefits.

Ugly but Probably Harmless

The reddened or rough patches on the skin are called, in doctor-speak, actinic keratoses. Because they result from long-term sun exposure, they usually appear on faces, scalps, forearms, and the backs of hands.

Such lesions appear most commonly on older patients. One large study of traditional Medicare beneficiaries found that over a five-year period, with an actinic keratosis. Then what?

“The vast majority of the time, they’re removed,” said Allison Billi, a dermatologist at the University of Michigan and an author of on the topic in JAMA Internal Medicine. That typically involves cryosurgery (freezing with liquid nitrogen), topical creams, or laser therapy.

The rationale: The patches could become cancerous. But “for the average patient with no history of skin cancer, there is less than a 1-in-1,000 chance of it progressing to skin cancer,” Billi said, citing . The lesions are far more likely to disappear on their own.

“The treatment may be more burdensome than the condition itself,” she added. Removal “is actually extremely painful, both during and after.” It can cause swelling, irritation, and lasting discoloration.

Besides, an actinic keratosis , or new ones will emerge. “This is a chronic condition,” Billi said.

She has proposed active surveillance, instead: Primary care doctors could observe the lesions annually for warning signs like bleeding, pain, or rapid growth, which might warrant removal. But “in many cases, it’s not necessary,” she said. “We don’t always need to do everything we can do.”

She does recommend using sunscreen, however.

Questionable Treatment

Patients take levothyroxine, one of the world’s most frequently prescribed drugs, when their thyroid glands can’t produce sufficient thyroid hormone.

With this condition, called hypothyroidism, “people gain weight. They have less energy. Their hair and skin are dry,” explained Jacobijn Gussekloo, a primary care doctor and researcher at Leiden University Medical Center in the Netherlands. “Everything slows down.”

Doctors also increasingly prescribe it for a borderline condition called subclinical hypothyroidism, which usually causes no symptoms but can progress to hypothyroidism.

Most patients take the drug for life — but do they have to? Gussekloo’s team has found that in many older adults with subclinical hypothyroidism, on their own.

The researchers have also reported that among older people with the condition, and “no apparent benefit.”

Like any drug, it can also cause harm. It may interact with other medications that older patients typically take. Moreover, “it requires frequent lab tests and follow-ups, more visits and expense,” said Maria Papaleontiou, an endocrinologist at the University of Michigan and an author of in JAMA accompanying the latest Dutch study.

“In high doses, it can cause hyperthyroidism, which can lead to cardiac arrhythmias and bone loss,” she added. Patients taking it also have to adjust their diets and meal schedules.

To determine whether some patients could stop taking levothyroxine, the Dutch researchers devised a protocol that gradually reduced doses over 30 weeks, with ongoing lab testing and consultations with doctors.

After a year, a quarter of the 370 participants, all over 60, while maintaining healthy thyroid function. Most had been on lower doses to begin with.

Patients shouldn’t stop levothyroxine on their own, Papaleontiou cautioned. Discontinuation requires tapering off gradually, with testing and monitoring. Some patients will always need the drug.

But it appears that “a select group of adults over 60 may not require this treatment lifelong,” Papaleontiou said.

A Screening With Risks

The question of when older patients can safely stop screening for colon cancer has prompted years of debate. The influential U.S. Preventive Services Task Force gives the screening a lukewarm , calling the benefit “small.”

Yet almost 60% of older patients who have had previous colonoscopies and face limited life expectancies (less than five years) are advised to undergo another screening, found.

As a gastroenterologist at the University of California-San Diego, Samir Gupta regularly encounters this issue with older patients. “I know they really have a low risk of colon cancer, and I’m putting them through more risk,” he said.

The risk of complications following a colonoscopy rise with age. One study found that nearly 7% of patients over 75 had within a month of the procedure.

Is it worth it? Gupta is the lead author of of almost 92,000 Veterans Affairs patients over 75 who had previous colonoscopies. In about 28%, the procedure had found an adenoma, a type of polyp that can become cancerous. Though only a small fraction do, gastroenterologists generally remove them.

The researchers found that after 10 years, veterans with a previous adenoma were more likely to develop colon cancer than those without one, though the rate was extremely low in both groups.

But just 0.5% — yes, one-half of 1% — of those with a previous adenoma died of colon cancer, compared with 0.4% of those without one. “A tiny difference,” Gupta said.

Both groups were dwarfed by the number of veterans — almost half — who died within the decade of other causes.

“Even if the procedure goes well, you’ll either find nothing or you’ll find something that’s not going to have real impact on your longevity,” said Itzkowitz, an author of published alongside the study.

Yet he has found that many patients who have had polyps removed want to continue colonoscopies.

It is hard to shift established medical norms. can meet with opposition from both patients and health care professionals.

Many older women past the point of documented benefit, and older men often beyond the recommended age.

Colonoscopies are less pleasant, so perhaps older patients will be glad to forgo them. “Even with polyps, the chance of dying from colon cancer is so low compared to everything else that can get you,” Itzkowitz said.

So he told his 85-year-old patient that she could skip another colonoscopy. She seemed pleased.

The New Old Age is produced through a partnership with .

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The certified professional midwife pressed the button on a handheld Doppler ultrasound machine she placed on Collins’ belly. “That’s her heartbeat,” she said to Collins’ 3-year-old daughter, who sat beside her mom as a whooshing sound filled the room. “I think Mommy’s baby’s right here.”

The midwife is not licensed as a nurse. In Georgia, that makes what she’s doing illegal. ºÚÁϳԹÏÍø News agreed not to identify her by name.

Georgia is one of seven states where delivering babies can earn non-nurse midwives, at minimum, a cease-and-desist letter requiring them to end their careers. In North Carolina, it’s a . In New York, .

Meanwhile, demand for their services is increasing. Intended home births rose by 42% nationally from 2020 to 2024, according to the National Center for Health Statistics, and those births are often overseen by certified professional midwives. In Georgia, they rose by 72%. Midwives who assist with home births typically see clients from prenatal appointments through after childbirth, providing more postpartum checkups than most new mothers receive.

Home births make up nationwide. In the eight states where they were most common in 2024 — Hawai‘i, Idaho, Montana, Pennsylvania, Utah, Vermont, Wisconsin, and Wyoming— they made up 3-5% of births.

As that number rises, midwifery advocates said, regulating the practice with licenses would allow home births to be safer. Free birth — without the help of a skilled professional before or after labor — can be .

“People are going to keep having their babies at home, and they deserve a trained provider,” said Missi Burgess, president of the Georgia chapter of the National Association of Certified Professional Midwives.

For decades, professional midwives have been advocating for laws to legalize and regulate their profession. More lawmakers have supported those efforts in the past 15 years, with 36 states and Washington, D.C., allowing them to get licensed to deliver babies. Last year, a wave of state lawmakers — in Georgia, Mississippi, Nebraska, New York, North Carolina, Ohio, and West Virginia — tried to add their states to the list, although none of their bills has become law.

Certified professional midwives deliver babies in homes or birth centers. Rather than attend nursing school — which many can’t afford — they earn a nationally recognized certificate by attending at least 55 births and demonstrating their knowledge. Nurse-midwives more often deliver babies in hospitals or clinics than in patients’ homes.

Some hospitals and doctors oppose midwife licensing proposals without certain guardrails. The American College of Obstetricians and Gynecologists showing that infants are twice as likely to die during planned births at home or in birth centers as in hospitals, while acknowledging that the data remains limited. It doesn’t account for several factors, including who assisted in the birth.

Still, prominent stories of home births with midwives gone wrong contribute to the skepticism around licensing laws. In 2023, The Washington Post of a licensed midwife who pleaded guilty to felonies in Virginia after an infant death and assisted with home births in Maryland in which two more babies died.

In Mississippi, a bill that would have regulated and licensed professional midwives died after a state senator blocked a vote in the committee he chaired. Democratic Sen. Hob Bryan he didn’t “wish to encourage that activity.”

But midwives said they have a sympathetic ear now in the Trump administration, with its Make America Healthy Again movement. Cassaundra Jah, executive director of the , said she has been on calls with midwifery groups pushing for the Department of Health and Human Services to provide legal protections for them, and some midwives have been in contact with the agency.

HHS spokesperson Emily Hilliard declined to comment on policy proposals but told ºÚÁϳԹÏÍø News that the administration “regularly meets with a wide range of stakeholders to hear input from the American public.”

Hospitals Want Guardrails

Advocates for the license say allowing certified professional midwives to provide care would help address a shortage of maternity care providers.

“Some midwives are leaving our state,” Rep. , a chiropractor who sponsored the Georgia bill, said during a hearing on the measure last year. “They’re being forced to quit. And now we have a shortage of these providers to take care of our pregnant moms.”

A by the March of Dimes found that 35% of counties in the U.S. have no birthing facility or obstetric provider. Georgia has the 13th-highest maternal mortality rate in the nation, according to the .

After the U.S. Supreme Court’s reversal of Roe v. Wade in 2022 eliminated federal protection for abortion, six-week abortion bans prompted more providers to leave states such as Georgia and Texas. Idaho lost by December 2024, two years after its abortion ban took effect. Doctors who left states with such laws cited fear of prosecution and an inability to provide the standard of care.

Of the 13 states with the fewest maternity care providers per capita, nine had a full or six-week abortion ban as of 2024, .

Licensing midwives won’t solve the larger maternity care shortage, but it’s a first step, said , a professor of midwifery and the principal investigator at the Birth Place Lab at the University of British Columbia. Certified professional midwives currently attend only about 1.4% of births in the U.S., according to federal data.

The would have granted certified professional midwives licenses through a state board, allowed them to administer lifesaving medications, and required their services to be covered by private insurance and Medicaid. They would not have needed a physician to supervise them. Without that mandate, giving birth outside of a hospital could be an option for more people.

But the Georgia Department of Public Health and the Georgia Hospital Association opposed the licensing bill, primarily because they wanted more regulations than the midwives were willing to accept — including physician supervision.

Anna Adams, a spokesperson for the hospital association, suggested establishing transfer agreements that required all women planning to have a home birth to register at the hospital first. When a laboring woman is transferred to a hospital, which happens in about , “we have no prior knowledge of this patient,” Adams said. “It’s a tricky situation to inherit when you’re trying to save the mother and the baby without any background.”

Georgia midwives said they planned to bring the licensing proposal back next year.

In early April, three midwives for restricting their ability to practice, arguing that the rules violate the state constitution.

“Every pregnant person should be able to choose where they give birth and with whom,” said Jamarah Amani, a plaintiff in the lawsuit and co-founder of the .

Black women are three times as likely to die during or after childbirth as white pregnant patients. In January, a prominent Black nurse-midwife in South Carolina died after unexpected complications from childbirth.

Today, midwives and their clients are predominantly white, but the home birth rate among Black women rose 42% nationally from 2019 to 2024, according to the Centers for Disease Control and Prevention.

“Ultimately the system has failed us as a people,” said Tina Braimah, a Black nurse-midwife who attended home births for a decade. She then opened a in North Carolina, allowing her to see more clients from a variety of backgrounds. “When the system consistently fails you, you look for other options.”

Becoming Part of the System

Many maternal health researchers say mothers fare better when midwives are a key part of the health system. In 2018, researchers at the Birth Place Lab published a study of all 50 states showing that integrating midwives was associated with better outcomes for moms and babies, including lower rates of infant deaths. Integration involves collaboration among all kinds of midwives and doctors so that patients can easily transfer to or from a hospital. It also involves giving all midwives the authority to practice the full range of their skills, including prescribing lifesaving medication.

A by the National Academies of Sciences, Engineering, and Medicine states that data from other countries suggests home births can be as safe as hospital births for low-risk women who are part of an integrated, regulated system.

Washington state has one of the highest rates of in the U.S., according to the . Its home birth rate is consistently higher than the national rate, while its remains lower than the national average.

One in 5 women report being mistreated during maternity care, according to a . Pregnant patients tend to be more satisfied when midwives lead their care, whether at a hospital, a birth center, or home.

Hannah Haynes gave birth to her first three children in a hospital near her home in Jefferson, Georgia. During the third labor, which was induced, she received a catheter that led to a urinary tract infection and then sepsis, a life-threatening condition. She was separated from her newborn for four days while receiving treatment.

“Something has to change,” Haynes said.

Haynes regrets electing to get induced when it wasn’t medically necessary. She gave birth to her fourth child at home, with the help of a certified professional midwife she trusted. She’s pregnant with her fifth and plans to use the same midwife. She said she won’t deliver at a hospital again.

“I was a little nervous,” Haynes said, because she had heard rumors that midwives didn’t know what they were doing. But after meeting the midwife, “I just felt so confident in her.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

‘We Have To Defend Being Paid’

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

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

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

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

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

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

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

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

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

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

Medical Debt’s High Toll

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

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

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

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

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

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

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

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

‘Optimized To Get Payment’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Maze of Standards

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

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

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

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

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

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

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

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

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

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

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

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

Fixing the System

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

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

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

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

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

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

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

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

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

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

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

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

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The waiver program, run by the Department of Health and Human Services, allows physicians who aren’t U.S. citizens to stay in the country while transitioning from the visa they used during their training to temporary worker status. In exchange, the doctors agree to work in underserved areas for at least three years.

“It will be the patients that suffer the most because in about three months, there’s going to be hundreds of places that are not going to have a physician that should have,” said a psychiatrist caught in the delay.

The doctor — whom ºÚÁϳԹÏÍø News agreed not to identify because they fear government reprisal — was among hundreds who applied this year for a J-1 visa waiver through the HHS Exchange Visitor Program.

If they receive one, the psychiatrist — who attended medical school in their home country in Europe before coming to the U.S. for their residency and fellowship — would work with vulnerable and disadvantaged patients in New York.

In recent years, the HHS program reviewed waiver applications in one to three weeks, according to two immigration attorneys.

But it currently has a backlog of hundreds of applications, which still need to be reviewed by the State Department and approved by U.S. Citizenship and Immigration Services, according to four attorneys interviewed by ºÚÁϳԹÏÍø News.

They said the foreign physicians will likely have to return to their home countries if their applications don’t advance to USCIS by July 30.

For them to reenter the U.S., their employers would have to pay a new $100,000 fee associated with the H-1B work visa. It’s a cost that many hospitals and clinics in rural and underserved areas say they can’t afford. “That’s the cliff that this train is headed for,” said Charles Wintersteen, a Chicago-based attorney who specializes in health workforce-related immigration.

HHS spokesperson Emily Hilliard didn’t answer questions about the number of pending applications or explain what caused the delays. But she said the Exchange Visitor Program has reviewed all fiscal year 2025 clinical J-1 waiver applications, as well as some from fiscal 2026.

The department is “implementing key process improvements to prevent future delays” and “working diligently” to evaluate remaining applications ahead of the July 30 deadline, she said.

The psychiatrist in limbo said employers hiring J-1 waiver physicians have to show they were unable to fill positions with American workers. If the doctors they planned to hire can’t arrive on time — or at all — patients will have to wait even longer for those vacancies to be filled, they said.

Wintersteen said postgraduate medical education positions are largely funded through Medicare and that “the taxpayers who pay for that training will not get the benefit of it.”

Physicians and immigration attorneys said HHS hasn’t explained the delays or let them know what to expect from their applications.

“Why would HHS want to take a program that is working — a program that places hundreds of U.S. trained international physicians in highly underserved parts of the country every year — and slow-walk it into non-existence,” Jennifer Minear, a Virginia-based health workforce immigration lawyer, said in an email. “How does that serve the public health? It is baffling.”

Waylaid Waivers

The U.S. healthcare system depends on foreign-born professionals to fill its ranks of doctors, nurses, technicians, and other health providers, particularly in chronically understaffed facilities in rural and low-income urban communities.

Nearly a quarter of physicians in the U.S. went to medical school outside the U.S. or Canada, according to .

Once noncitizens complete postgraduate education in the U.S., which typically ends on June 30, they must return to their home country and wait two years before applying for an H-1B work visa. Or, they can seek , which lets them remain in the U.S. on H-1B status in exchange for working for three years in a provider shortage area.

The attorneys said they’re seeing delays only in the Exchange Visitor Program, not in the other federal or state J-1 waiver programs.

The HHS clinical care program received 750 waiver applications last year, Minear and Wintersteen said, and is reserved for doctors working in pediatrics, psychiatry, family and internal medicine, or obstetrics and gynecology.

The program typically needs to forward recommendations to the State Department by mid-March, from John Whyte, CEO of the American Medical Association.

Minear said HHS stopped processing applications in late September or early October before it started forwarding them again a few months ago.

“But the pace is dramatically slower” than usual, she said.

Minear said the State Department usually takes two or three months to review HHS recommendations and must send them to USCIS before July 30 for most of the doctors to stay in the country.

If they don’t make that deadline, Wintersteen said, doctors will have to leave the country unless they obtain another kind of visa, get a J-1 waiver through another program, or extend their current visa by taking board exams or doing additional training.

The psychiatrist, who is supposed to start work on July 1, said they applied for a waiver in order to stay in the U.S with their partner, and because it would let them help the most vulnerable mental health patients. They said their future clients would likely include trafficking survivors, homeless people, and prison or jail inmates. “That’s the population I want to work with,” they said.

Waiver Delay Meets H-1B Dilemma

President Donald Trump issued a that railed against the tech industry’s use of H-1B work visas. The order created the $100,000 fee that applies to workers in all fields — not only tech — living outside the U.S. The payment doesn’t apply to those already in the country.

As of Feb. 15, employers had paid the fee for 85 workers, from USCIS. It’s unclear if any of those payments were for physicians or other medical providers.

The psychiatrist said officials at the hospital that plans to hire them said they can’t afford to pay to bring them back to the U.S. if they must go home.

“A lot of hospitals who hire J-1 waiver physicians are in underserved areas, and so they treat Medicare and Medicaid patients,” they said. “By definition, for the most part, they’re not rich hospitals.”

Barry Walker, an attorney in Tupelo, Mississippi, focused on health workforce-related immigration, said employers have already spent money on recruiters and attorneys like him to help with the waiver process.

Adding the H-1B fee is “just a deal killer, especially for the small, rural hospitals,” he said.

Attorneys said most employers will sponsor physicians in need of an H-1B visa only if they’re in lucrative specialties, such as cardiology or orthopedics, in which they can recover the cost of the fee.

They said healthcare facilities are much less likely to pay the fee to hire foreign nurses, lab technicians, and other healthcare professionals who are more likely than physicians to complete their training outside the U.S.

Employers , but attorneys said they haven’t heard of a hospital or clinic being granted one.

Fighting on Two Fronts

Physicians, hospital leaders, lawmakers, and immigration experts are trying to draw attention to the J-1 waiver delays at HHS while hoping to overturn or limit the new H-1B fee.

The Trump administration hasn’t acted on letters from , , and that requested an exception to the $100,000 fee for physicians or all healthcare workers.

In March, a bipartisan group of lawmakers that would create a healthcare exemption. It has not yet had a hearing.

At least three lawsuits — from the , a , and a that includes a company that recruits foreign nurses and a union that represents medical graduates — are seeking to end the fee entirely.

As for the J-1 waiver delays, the American Medical Association CEO asked the Exchange Visitor Program to use “emergency batch processing” for physicians with contracts to start work this summer.

Efrén Manjarrez, president of the Society of Hospital Medicine, which represents doctors who work in inpatient units, also called for emergency measures.

“Every day this backlog persists is a day that hospitalized patients in these communities face greater risk,” to the program.

Meanwhile, Canadian hospitals have been recruiting foreign physicians completing their training in the U.S, the psychiatrist said. They said one of their friends accepted an offer, withdrawing their HHS waiver application to head north.

The psychiatrist said if they must leave the U.S., they’ll be separated from their partner and out of a job for months as they work to get licensed in their home country.

Even if their employer were able to afford the H-1B fee, they’re not sure they’d want to return.

“This entire process has been so incredibly painful and just soul-crushing,” they said. “I would rather go to a country that would appreciate my motivation to work with patients.”

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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.”

Someone in America dies by suicide every 11 minutes. It’s that common. But not normal.

Humans have evolved over centuries to survive. So when people try to kill themselves, something has gone wrong. Typically, the assumption is that something happened in the person’s mind — a mental illness.

But in recent decades, there’s been a growing movement to ask a different question: What went wrong in the world around that person?

For Chris Pawelski, it was a torrent of factors. His dad — one of his best friends, whom he worked with daily for decades — was diagnosed with renal cancer and died six months later. Pawelski was left as the primary caregiver for his mom, who had dementia.

His family’s in New York’s Orange County — where he first worked as a 5-year-old, collecting onions that fell out of crates — was hemorrhaging money. Pawelski said he was growing roughly $200,000 worth of crops some years but took home only about $20,000, unable to negotiate higher prices with wholesale buyers that dominated the market.

Debt to suppliers and equipment vendors piled up, and the burden strained his marriage. He had little time for friends, working sunup to sundown seven days a week, desperately trying to preserve his family’s legacy.

“It’s all stuff collapsing down upon you,” he said. “It’s weeks, months, years of dealing with all sorts of pressures that you can’t alleviate.”

Pawelski started wondering what it would be like to get hit by a truck on the busy road in front of his house. “You think you’re already on your way out, so why wait?” he said.

Millions of Americans have , and tens of thousands . Suicide repeatedly ranks among the — making the U.S. an .

Prevention efforts have typically focused on connecting individuals in crisis with treatment — despite therapy and medication being , the healthcare system , and a consensus that suicide is caused by a , including but not limited to mental illness.

Now, many people working to prevent suicide, including some who have tried to harm themselves or lost a loved one to it, are calling for a broader approach. Some were galvanized by the covid pandemic, when rates of — not because everyone’s brain chemistry suddenly changed but because the world changed. That led many to believe that, while treatments and crisis care are vital, the goal of suicide prevention needs to expand beyond stopping people from dying to also giving them reasons to live.

“It’s not rocket science,” said , a psychologist and internationally recognized suicide prevention researcher who lost her brother to suicide. If “you have happier, healthier people, they live longer, happier lives.”

That means suicide prevention shouldn’t be limited to answering hotlines or treating patients in psychiatric wards, she said. It should also involve running food banks to ensure families don’t go hungry or hosting weekly book clubs for homebound seniors to make friends. It can take the form of school programs that build resilience in children or housing policies that prevent evictions.

shows these — even if they don’t have the words “mental health” or “suicide” in the title — can reduce the number of people who kill themselves. They often lower rates of crime, addiction, and poverty, too.

The U.S. has lagged other countries in adopting this approach, Spencer-Thomas said, perhaps because it’s easier — and more politically palatable — to tell someone to go to therapy than it is to enact sweeping policy changes, such as an .

“As long as we have that convenient narrative that it’s just a bunch of broken people needing medicine and treatment, then we’re never accountable for fixing the broken things in our communities,” Spencer-Thomas said.

The Trump Administration’s Approach

Overhauling suicide prevention efforts to focus on broad social and economic policies might seem overwhelming and unrealistic — especially right now. This approach requires large upfront investments that lack across-the-board support, either because of budgeting realities or ideological bents.

President Donald Trump and his appointees have said little about suicide directly, but many of their policies do the opposite of what shows .

The administration has championed and the that are projected to leave and in coming years. It has injected uncertainty into the economy through , , and . It has for school-based mental health initiatives, gutted federal programs that focus on at-risk blue collar workers, and . (Suicides are the in America.)

“All of these changes are creating a firestorm,” said , the chief advocacy officer for the National Alliance on Mental Illness. They can cause “extreme stress and anxiety” in people’s lives, she added, and “when people feel desperate, that’s when crises can emerge.”

Federal health officials insist that suicide prevention remains a priority.

, director of the Centers for Disease Control and Prevention’s injury center, said the agency is focused on creating systems that can support people “no matter what may be happening” in the world around them. “There’s always going to be turmoil in people’s lives,” she added.

Arwady and , who leads suicide prevention work at the Substance Abuse and Mental Health Services Administration, said several of the Trump administration’s priorities align with an upstream approach.

For example, they said, its could help address the , since exercise is proven . Similarly, people who are homeless have , and the administration has been . Federal officials have also encouraged , and research shows members of faith communities are .

However, the Trump administration has made at and and has for , leading to questions about whether or how this work will continue.

A History of Medical and Crisis Care

Suicide prevention reached the national stage in the late 1990s, said , who worked at the CDC for 15 years before joining the , a nonprofit focused on teen and young-adult mental health.

As suicide rates grew among young people, a group of government officials, clinicians, and advocates gathered in Reno, Nevada, in 1998 to discuss the pressing issue. Over the next few years, the surgeon general and the federal government published its .

These documents acknowledged the role of society and economics in suicide risk but focused heavily on identifying people in crisis and increasing access to medical treatment.

Those are critical steps to suicide prevention, many mental health researchers and clinicians say. They’re also politically favorable. For elected officials, who have a few years to demonstrate their achievements before the next campaign, it’s easier to count the number of people receiving therapy than the number of people who never developed suicidal thoughts because long-term economic and social investments helped them maintain steady jobs and strong friendships.

The push for individual treatment also comes from a pervasive misconception that suicide is always the result of an underlying mental illness, said , who is the senior director of population health at Mental Health America and contributed to a .

Although how many people who die by suicide — with estimates from to — the takeaway is that mental illness is not the sole cause, Reinert said. That means treating it can’t be the sole response.

Plus, mental illnesses can be by life circumstances. Treating depressive symptoms without looking at factors such as childhood trauma, the loss of a loved one, or being laid off from a job is an incomplete approach, many mental health researchers and clinicians say.

The covid pandemic, especially, made people in the field recognize “we really need to address all of these conditions that are creating stress, anxiety, and crises,” Stone said.

In July 2022, the federal government — a shorter number for the national suicide crisis line, meant to provide an alternative to 911 for mental health emergencies.

, who led federal work on 988, said the infusion of money and attention on the hotline helped states build better crisis response systems, from centers that answer calls to mobile crisis units.

But that’s not enough to solve America’s suicide problem, she said. “You’ll never be able to build a system based on crisis alone.”

Help for the Farm and the Farmer

Pawelski, the onion farmer in New York, hit his breaking point in 2020.

He had a decent crop that year, but Canadian exporters were into American markets, making it difficult for him to sell his product.

“I was having to beg people” to buy, he said. And when he managed to sell, prices were comparable to prices in the 1980s.

By the end of the season, he had incurred losses of a few hundred thousand dollars.

He said he and his wife decided, “We couldn’t afford to grow onions again.”

The idea that his family’s onion farm would end with him was “soul-crushing,” Pawelski said. He lost weight rapidly and thought about ending his life.

He and his wife called for help. Founded at Cornell University in 1986, the free program connects farmers with two consultants: a financial analyst specializing in farm planning and a social worker focused on emotional concerns and family dynamics.

The financial specialist helped Pawelski develop a new business plan. Instead of farming onions for wholesale, he could grow greens, tomatoes, peppers, and eggplants at a small scale to sell directly to consumers. He could upgrade an old truck with a cooler and deliver produce to people’s doors. He would supplement that income with teaching, speaking engagements, and other work that took advantage of his master’s degree in communications.

The social worker helped him accept that new reality — equally crucial, Pawelski said. “If you’re pissed off” about the change, “no matter what kind of proposal or idea they have, it’s not going to go anywhere.”

The adjustment took months. Pawelski also saw a therapist during that time.

Then one day a neighbor noted that Pawelski seemed much happier. That “caught me off guard,” Pawelski recalled. He didn’t realize his inner transformation was so apparent.

Today, Pawelski’s business has stabilized, and he and his wife are paying down debt. Pawelski advocates for programs to help farmers’ mental health and address their .

That can mean crisis hotlines and access to affordable therapy, Pawelski said. But what he really wants are policy changes that help farmers get fair prices for their produce, debt relief, and the installation of broadband internet in rural areas so farm families and employees can be connected.

“We need to think broader and longer-term than a helpline,” he said. That’s “a band-aid on a gunshot wound.”

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“I will not go to the emergency room” — emphasis on not — were his first words after passing out, having a seizure, or regurgitating the protein smoothies I made to pass his narrowed esophagus. He said it again and again, even as fluid built up in his lungs, rendering him short of breath and prone to agonizing coughing spells. He had been a big, athletic guy, but now, in the ugly process of dying, he was looking gaunt. Ours was a precarious existence, but I understood his adamant rejection of the emergency department. Most prior visits had morphed into extended trips into a terrifying medical underworld — to a purgatory known as emergency department boarding.

I managed to keep Andrej at home while we planned for hospice, until one dreadful night at 2 a.m., when I ran out of hacks. We got into an ambulance and together headed to the hospital.

* * *

We had already learned the hard way that if you need admission to the hospital, you can remain in the emergency department — in the hallway or a curtained bay on a hard stretcher or in a makeshift holding area — for more than 24 hours, even for days, while waiting for a real hospital bed. In this limbo state, you’re technically admitted to the hospital, but still located in the physical domain of the ER. And the rules governing acceptable care and safety measures become much less clear.

In the summer of 2024, still being treated to keep his cancer at bay, Andrej had suddenly become somewhat delirious, requiring hospital admission to rule out the possibility of infection or, worse, of the cancer having spread to his brain. After we went to an emergency department near our home, in New York City, he lay trapped on a hard stretcher, with its rails up, for more than 36 hours, amid the alarms and calls for the code team, without any clues of whether it was day or night, and with access only to the few toilets shared by the dozens of patients and visitors in the emergency room. None of this helped his mental state. By the end of Day 2, he knew me — kind of — but had become convinced that the doctors were “the enemy” and that I was their paid accomplice.

After I pressed to move him to a bed “upstairs” — I meant to an inpatient ward — he was transported to a bed five floors higher. I realized too late that this was an “ED overflow area,” according to the paper sign attached to the entrance’s swinging door. A plaque in the hall identified it as a former labor and delivery floor. It had been kitted out with some of the trappings of an actual ward, such as real beds and bathrooms, but not the most important one: adequate personnel.

The space was by turns eerily quiet and wildly cacophonous. Although patients there were undergoing intimate, embarrassing procedures, rooms were gender-neutral. That first night, Andrej’s roommates were a man in a coma and an elderly French woman in a diaper and boots (no pants), who marched around her bed singing like a chanteuse. In the morning, I pestered a harried nurse and got Andrej moved to a quieter room with three beds, where two people died in three days.

The overworked staff did the best they could, but that was far from good care. My husband — who needed protein and calories but could consume only soft foods — was served chicken cutlets. When I noted to one nurse that Andrej’s soiled sheets hadn’t been changed for several days, she directed me to a linen cart so I could change them myself.

* * *

That first time, one of several extended ER stays Andrej made as a boarder, I thought perhaps we had just hit a busy time at a busy hospital. When I worked as an emergency medicine doctor a few decades ago, the ED was mostly empty at the beginning of my 7 a.m. shift. A few patients might be lingering from the day before: alcoholics who would sober up and leave, patients with a severe burn or a bad case of pneumonia who were waiting for a bed in intensive care.

In the decades since, EDs have doubled or even tripled in size. Even so, patients are piling up. When I started asking around, I quickly discovered ED boarding has become commonplace in the past five or so years and is getting worse, more or less omnipresent in hospitals. “Everyone knows about this problem, and no one cares enough to do anything about it,” Adrian Haimovich, an ED doctor at Boston’s Beth Israel Deaconess Medical Center who studies ED boarding, told me. “It’s barbaric.”

Measuring the problem has been challenging because data on ED boarding time is limited. Only this past November did the Centers for Medicare & Medicaid Services finalize a rule that would require hospitals to collect data on ED boarding times. Using what other data he could find, Haimovich has shown that boarding for more than 24 hours has increased dramatically for people 65 and older since the pandemic.

Once they enter ED boarding, patients exist in a gray zone. There has been a national push to establish “safe staffing” in EDs. Even with that, if an ED boarder has a medical complaint that needs quick attention, it’s easy for them to fall through the cracks, Haimovich said: In some hospitals, an admitting team of doctors from upstairs is responsible for the boarders stuck in the ED (but not the associated floor nurses); in others, overstretched ED medical staff must take full responsibility to care for boarders until a bed opens — and that in addition to seeing new patients. Some EDs now routinely hold more boarders — many of them quite ill — than patients being actively evaluated.

Doctors and nurses have complained bitterly about the situation, which forces them to provide inadequate care. Gabe Kelen, the director of emergency medicine at Johns Hopkins University, told me it’s creating a for emergency department staff. But doctors and department heads such as Kelen are not in control of admissions. Generally, a hospital’s administration parcels out inpatient beds, and emergency department boarding is in many ways a result of today’s business models and pressures.

* * *

When I worked as a doctor, if an ED was overwhelmed beyond capacity, the attending (that was me) typically called in to ambulance dispatch to request “diversion” — ambulances should take patients to another hospital. If a hospital got too full, the admitting office canceled elective admissions. Today, hospitals run like airlines and intentionally overbook, Kelen said. They also have fewer beds than they did a few years ago — in part because nurse (and executive) salaries have risen since the pandemic. An empty, staffed bed is a money loser, so the institution has an incentive to keep beds full and make new patients wait.

“The problem isn’t inefficiency — it’s the way health care finance is structured,” Kelen said. “Hospitals typically run on thin margins. Elective admissions are prioritized because they tend to be for lucrative procedures like heart catheterizations and joint replacements.”

Admitting patients through the emergency room has business advantages, too, even if it means they wait for a bed. The evaluation generates charges that typically run many thousands of dollars; once admitted, my husband was still billed the inpatient rate even for a stretcher in the hall. Old, sick, and dying patients are more likely to linger there in part because, after they’re in a real bed, they may take up that spot for days or weeks at a time while waiting for a bed in rehab or hospice, requiring nursing time but not the types of interventions that generate revenue.

Hospitals have tried band-aid fixes, such as bed-tracking software and discharge lounges where patients can wait for paperwork or transport home. Many do hire more doctors and nurses and orderlies in the ER to confront the overflow. But “long ED wait times and boarding have root causes that extend far beyond EDs and hospitals themselves,” Chris DeRienzo, the chief physician executive at the American Hospital Association, told me in an email. He listed the high cost of opening beds and the shortage of rehabilitation facilities, and emphasized the precarious financial situation of many hospitals.

But while Andrej waited in the overflow area, we were not thinking of any larger picture: He was sick, desperate, and still waiting for care. He lingered in boarding for four days before he got a bed. Each time he had to return to the ED, each time he faced a painful wait, he hardened his resolve to never go back.

* * *

Thunk. Crash. “Elisabeth, help!” Those were the sounds that woke me at 2 a.m.

I had fallen asleep on our bed, next to Andrej, his head raised with a foam wedge to ease his breathing and make sure food would not come up. Before I dozed off, I listened to his breathing — 30 times a minute, two times faster than normal — a sign he was struggling to get sufficient oxygen. And that racking cough. This was not good.

Now his bruised body was twisted, lying on the floor with his head against the bed frame. He’d attempted to use his walker to go to the bathroom. He was complaining of chest pain, coughing and short of breath. But he managed to get out those words: “I will not go to the ER.”

I knelt by his side in tears, telling him that I loved him but that I could not do anything more right now at home. Carlos, our super, helped me get him into bed and called EMS. I promised Andrej (against hope) that, given his condition, he would surely be quickly assigned to a real room and bed.

What happened next was a blur. I have a vague memory of paramedics arriving, putting him on the stretcher, sliding him into the ambulance, giving him oxygen. I mechanically grabbed his “do not resuscitate” form from under the refrigerator magnet and buckled myself in beside him.

Then he was in the ED, which was thrumming with activity, under the fluorescent lights, with oxygen in his nose, wearing a hospital gown, and looking gray and sick. The staff asked what was, for them, the operative question about a guy with widespread cancer: “Does he have a DNR?” Andrej asked me what was, for him, the operative question: “Did you bring my shoes?” He already wanted to leave.

An X-ray showed possible pneumonia, more tumors, and a buildup of fluid in his lungs. A medical team that covers oncology patients wrote an admitting note — he was now a boarder, again — and then retreated upstairs. They started antibiotics and gave him something to help him sleep amid the alarms and shouting. He didn’t.

When I came back the next morning — and two mornings after that — I was alarmed to see him still there on a hard stretcher, his feet dangling off the end, exhausted and in pain. “When will he be admitted to a bed?” I implored. If some of the stuff in his lungs was infectious, maybe he could be treated and get home.

Likely soon and I hear your frustration — I came to detest those two phrases.

Neighboring patients came and went 24 hours a day. Some were pleasant; some were screaming in pain or just screaming mad. Pulmonary doctors came and, in this semipublic space, used a large needle to remove three liters of fluid from Andrej’s right lung cavity.

* * *

Near the end of the Biden administration, in response to a bipartisan congressional request, the Department of Health and Human Services convened a meeting on emergency department boarding. Its report, from HHS’ Agency for Healthcare Research and Quality, came out the same month that the Trump administration took office, not long before Andrej’s fall — the last night he spent at home.

“Emergency department (ED) boarding is a public health crisis in the United States,” the report concluded. “Patients who are sick enough to require inpatient care can wait in the ED for hours, days, or even weeks.”

“Boarding contributes to increased mortality, medical errors, prolonged hospital stays, and greater dissatisfaction with care,” the report said.

The meeting proposal called for the formation of an expert panel to recommend solutions. In theory, a panel could have weighed in on key questions: Should hospitals — some of which are rich institutions — get paid an inpatient rate for boarding in the ED? Should they have to report boarding times and face penalties for excess? Should they be required to open more real beds, and should requirements for licensing be lessened? How can the country create more rehabilitation beds?

But since then, the Trump administration has dramatically cut that HHS agency’s staffing, as well as its grant programs. (Congress is still pushing to fund the agency.) The expert panel never formed, let alone offered solutions. The Centers for Medicare & Medicaid Services this year did initiate that will include voluntary reporting of boarding times in 2027, becoming mandatory in 2028. Bad marks will eventually affect Medicare reimbursement.

In an emailed statement, the Joint Commission, which certifies the nation’s hospitals, called boarding a “serious public health crisis” and “one of the most incredibly complex challenges in healthcare.” Although the organization does indirectly look at hospitals’ “ED throughput” from charts, such data is not comprehensive. Little information exists, for instance, about how many people’s last days are spent on stretchers, in hospital limbo.

None of this knowledge would have helped my dying husband. So I did what I’d promised myself I’d never do: I called a doctor friend, who called the hospital’s VIP office.

Suddenly Andrej was whisked to a real hospital room, with a bed that he could adjust to keep his head elevated, a tray he could eat from, a morphine pump, a TV, a bathroom, and a nurse call button at his side. A room with extra chairs, so his stepkids and friends could visit with gifts and mementos one last time. A room where the caring staff placed a chaise longue, where I could sleep over. That way, when he woke scared and coughing and yelling for me, I was there to hold his hand, adjust the oxygen, and push the button for an extra dose of narcotic.

Until, six days after we got in the ambulance and three days after we’d moved to this room, he woke early one morning, agitated and coughing, calling out, “Elisabeth?” I was there. But then, in a blink, he wasn’t.

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