Homes that once belonged to friends, family, and neighbors had siding covered in mold. Some were boarded up. Others had holes in their roofs.

Black churches once used Oquina Creek, which runs along the border of the neighborhood, to baptize their congregants. Today, fecal bacteria and other contaminants have made the water unsafe due to an aging wastewater system.

“Sometimes you get the feeling like you’re in a Third World country,” Williams said. After three decades in Washington, D.C., he returned four years ago with a mission to revitalize communities such as Dewey City, which he said are “part of what makes Thomasville, Thomasville.”

A $19.8 million Community Change Grant from the Environmental Protection Agency was supposed to shift the tides of the neighborhood Williams grew up in.

The city and the , where Williams formerly served as community development director, applied for the grant in 2024. It was part of a $2 billion effort to help disadvantaged communities address environmental health risks and create clean energy and climate resiliency projects.

But three months after winning the grant, Thomasville became one of across the country — from to to — to see the funding stripped as priorities shifted in Donald Trump’s second presidency.

On the first day of his second term, Trump signed an executive order titled “.” It stated that the Biden administration “forced illegal and immoral discrimination” through diversity, equity, and inclusion programs.

In an emailed statement, EPA spokesperson Mike Bastasch said the administration is “fully committed to being a great steward of taxpayer dollars.” He added that the “radical agenda” of DEI and environmental justice “preferencing” are not within the agency’s core mission of protecting human health and the environment.

Environmental health advocates argue, though, that the decision to cut the grants was not rooted in science. They say that equating environmental justice to DEI is an act of bad faith and that withholding the money forces disenfranchised communities to delay long-overdue updates needed to protect public health for marginalized populations.

“I unfortunately believe we’re going to see a reversal in the health profile of this country,” said , an associate professor at the University of Michigan who served in the Biden administration as the first federal chief environmental justice officer.

“This current federal regime has decided that humanity and public health and justice don’t mean anything,” she said.

‘Why Us?’

Thomasville, near Georgia’s southwestern border, is home to just over 18,600 people.

The city had hoped to improve health outcomes in neighborhoods on its southern and western sides where, according to the grant proposal, “historical redlining created a legacy of disinvestment.”

Those areas have a deep history: Dewey City, for example, was the first neighborhood in the city where Blacks could build homes after the Civil War. It’s also home to the closed Douglass High School — the first public school for Blacks in Thomasville, established in 1902.

“This place has been neglected,” said Williams, who occasionally hosts historical walks through the community. “But it’s worth bringing it back online.”

The proposed “Restoring Resiliency” project featured a plan to remove toxic substances such as mold, lead paint, and asbestos from homes, repair a nearly 82-year-old wastewater system, and convert part of a shuttered high school band room into a health clinic.

“This was a long and storied attempt to bend the arc of justice closer,” said Jeremy Rich, a Thomas County commissioner and the pastor at First Missionary Baptist Church. “Justice in healthcare. Justice in environmental impact.”

Having a clinic in the community would be a “game changer,” Rich said. During the covid pandemic, he said, older residents who rely on public transit were reluctant to go to the nearby hospital or the county health department to get vaccinated. When his church offered shots from Black nurses, he said, vaccination rates improved.

Many residents don’t have the financial means to remove mold, lead paint, and other toxic materials, said Thomasville Mayor Pro Tem Lucinda Brown. “They just have money to live with every day. That’s it,” she said. “If they can make that happen.”

The grant meant hope, and its reversal left many asking, “Why us?” Williams said.

In the EPA’s May 2025 letter announcing the grant termination, it said Thomasville’s project promoted “initiatives that conflict with the Agency’s policy of prioritizing merit, fairness, and excellence.” The grant was “inconsistent with, and no longer effectuates, Agency priorities,” the letter said.

Environmental justice projects are rooted in science, not DEI, said Jillian Blanchard, the senior vice president of climate change and environmental justice at , a national nonprofit that provides pro bono legal assistance in focus areas such as health equity, immigration, and environmental health.

“Where is the water dirty? Where is the air unclean?” she said. “That is where the money should go.”

In June of last year, nearly two dozen communities and organizations around the country filed a to get the Community Change Grants reinstated. The lawsuit argued that the projects — such as efforts to create energy-efficient housing in Kalamazoo, Michigan, and empower Houston residents in the pollution permitting process — were vital.

The case was dismissed by a federal district judge in 2025 but is being appealed.

Thomasville was not named in that lawsuit. But the city did appeal the EPA’s decision on its project with the support of Blanchard’s group. The city and the EPA continue to dispute the issue.

This March, the EPA’s deputy inspector general, which serves as an independent watchdog for the agency, concluding that the process for determining the awardees was fair.

Such federal funding is needed because large-scale change is difficult for small municipalities to achieve without getting stuck with high-interest loans, Blanchard said.

“It’s next to impossible,” she said. “That’s one of the reasons the things haven’t been done.”

‘It’s Not Over’

The city of Thomasville has found other ways to make some improvements in the meantime. With the help of a nearly $3 million federal Community Development Block Grant from the Department of Housing and Urban Development, it made repairs to portions of Dewey City’s sewer, water, and drainage systems.

The Thomasville Community Development Corp. has begun building affordable housing in Dewey City and intends to convert a portion of the closed Douglass school into apartments for seniors.

The corporation has also applied for $764,000 in through the office of Sen. Jon Ossoff (D-Ga.) that it hopes to use to construct a community health clinic in Dewey City. Decisions on these funding requests will be made this fall.

“It’s not over,” said Williams, whose legacy in Thomasville runs deep. At the center of what locals call The Bottom — a two-block stretch of downtown where independent Black and other minority-owned businesses once thrived — is a plaque honoring his father, Earl Williams Jr., the city’s first Black mayor.

As he peered at his father’s memorial on a muggy afternoon, he reaffirmed his intentions.

“There’s more work to be done, and I’m able,” he said. “I like pouring into the community.”

But he has little hope the initial grant will be restored under the current administration.

“That was our shot. We didn’t do anything to miss it,” he said. “We just did it during the wrong period of time.”

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

More than a decade ago, Noon said, she was diagnosed with adult-onset Still’s disease, a rare type of inflammatory arthritis that can cause rashes, debilitating pain, and fevers. The disease upended her life.

She had been living a typical suburban life in Michigan, shuttling her two kids to activities like cheerleading, choir practice, and track. She was active in the PTA. She managed a bank.

She went from that to crawling to the bathroom because she was in so much pain, “just crying all day long” from being so sick.

Noon, who is disabled, said she couldn’t work for eight years — a time marked by hospital stays that stretched for weeks.

“I honestly thought I was going to die,” Noon said.

So it was a shock when Michigan denied her application for Medicaid benefits last year after she lost private insurance. Worse yet, it came down to an IT error, according to an attorney who helped Noon overturn the denial.

“I can’t afford my medical care. I have to have insurance,” said Noon, who has returned to working.

Deloitte, a multibillion-dollar global consulting firm, has operated Michigan’s Medicaid eligibility system under contracts worth roughly $768 million since 2006, according to contracts reviewed by ºÚÁϳԹÏÍø News. Nationwide, Deloitte dominates this important slice of government business: At least 25 states have awarded the company contracts to build or run computer systems that control access to safety net benefits such as Medicaid.

Michigan’s system has incorrectly directed people with disabilities into skimpier benefits that cover limited care or has denied coverage completely, a ºÚÁϳԹÏÍø News investigation found. Similar problems were at the center of a class-action suit in Tennessee, , and have occurred in Texas, according to interviews and state records.

The ºÚÁϳԹÏÍø News investigations are based on statements from state officials, allegations and declarations in court documents, emails obtained through public records requests, state government information provided to Medicaid enrollees and applicants, and interviews with attorneys and patients or their caregivers.

In an emailed statement, Deloitte spokesperson Karen Walsh said it found “no system anomalies causing routine denials of Medicaid for people with disabilities.”

“There are many reasons why someone may no longer be eligible for a benefit they once received or believe they deserve,” Walsh said. “All of the eligibility systems we support are owned by the states and built to their unique specifications. We will continue to work at the direction of our state clients.”

Lynn Sutfin, a spokesperson for Michigan’s Department of Health and Human Services, said it “is not aware of any widespread or systemic issues” within Bridges, Michigan’s eligibility system for Medicaid, SNAP, and other benefits, “related to disability‑based eligibility pathways.” 

Since 2006, Deloitte’s contracts with the state have said the company is responsible for development, implementation, maintenance, operations, and enhancements to the Michigan system.

Computer system problems foreshadow trouble as states prepare to roll out the most significant and complicated changes to their Medicaid programs in years. Those changes, dictated by President Donald Trump’s landmark One Big Beautiful Bill Act, have states rushing to update their Medicaid computer systems.

Nationwide, on Medicaid have a disability, according to KFF.

“When these administrative systems get overloaded, everyone gets impacted,” said Pamela Herd, a University of Michigan professor who researches bureaucratic obstacles to accessing government benefits. “The systems are going to be really, really strained.” 

In Michigan, Noon was eligible for Medicaid through a program that provides coverage to disabled adults who work. But the state’s computer system didn’t register that she is disabled and said she earned too much to qualify, according to documents reviewed by ºÚÁϳԹÏÍø News and interviews with Noon and Anastassia Kolosova, a disability rights attorney who helped her.

Without Medicaid coverage, Noon paid hundreds of dollars out-of-pocket for prescriptions, after scrounging for discount coupons. She takes some of the drugs twice a day.

Without them, “I’m toast,” she said. It was stressful “not knowing if my medicine’s going to be $50 or $500 this month, because it changes constantly.”

Noon said her doctor agreed to fewer visits to avoid medical bills.

“It was kind of a nightmare,” Noon said.

‘I Just Wanted To Give Up’

Medicaid, a safety net health program jointly run by the federal government and states, people with low incomes or disabilities. State governments rely on companies like Deloitte to design and operate computer systems that assess whether people qualify for Medicaid or food aid through the Supplemental Nutrition Assistance Program, commonly known as food stamps.

That technology has a history of errors that deprive eligible people of benefits, earlier ºÚÁϳԹÏÍø News investigations have shown. As reported previously, Kenneth Smith, a Deloitte executive who leads its national human services division, said Medicaid eligibility technology is state-owned and agencies “direct their operation” and “make decisions about the policies and processes that they implement.”

“They’re not Deloitte systems,” he said, noting Deloitte is one player among many who together administer Medicaid benefits.

States are under immense pressure to update their eligibility systems on a tight schedule to adhere to requirements in the Republicans’ sweeping 2025 tax and spending law. Companies including Deloitte, Accenture, and Optum are being paid millions in taxpayer funds to make the changes, which are projected to strip Medicaid from roughly 7.5 million people and SNAP from 2.4 million people by 2034.

Many coverage restrictions in the new federal law don’t apply to seniors, children, or people who are disabled, such as Noon. Nonetheless, the law’s demands on state agencies and the computer systems they oversee will disrupt benefits, advocates for Medicaid enrollees and other healthcare experts said in interviews.

The same systems also need to correctly classify why someone is eligible for Medicaid — and therefore which rules and restrictions apply.

The law’s SNAP restrictions began to take effect in 2025, and major Medicaid provisions begin later this year, generally after the midterm elections.

Kolosova is a supervising attorney with Disability Rights Michigan, a legal advocacy organization for people with disabilities. She said she has been unable to get a meeting with Michigan officials to understand the underlying problem that deprived Noon of health coverage.

State records show Deloitte has held contracts for at least 14 years for Bridges, Michigan’s eligibility system for Medicaid, SNAP, and other benefits. In its attempts to secure more business, the company often cites its nationwide footprint in Medicaid operations.

“Deloitte understands Bridges,” and its history in Michigan makes the company “the ideal vendor,” the firm said in its . Given Deloitte’s work on similar systems in 31 other states, , “Michigan benefits from our technical expertise drawn from across the nation.”

But advocates who work with people with disabilities say Michigan’s computer system has failed to recognize when certain adults should receive Medicaid benefits.

Problems aren’t unique to the Great Lakes State. Medicaid beneficiaries who brought a against Tennessee in 2020 said the state’s Deloitte-built system “does not reliably test for eligibility” for several categories of people with disabilities. The firm’s is worth $1.12 billion over a decade.

A federal judge in 2024 , ruling that Tennessee violated federal law and the U.S. Constitution. The lawsuit does not name Deloitte as a defendant.

In Michigan, a from the state’s Office of the Auditor General said government agencies “did not provide effective project administration” and failed to ensure that the state could “independently maintain and operate Bridges” because “the contractor did not transfer knowledge and skills” to state officials, according to the audit.

The auditor’s report said that, as a result, Deloitte’s original contract — valued at roughly $70 million — ballooned by $50 million over the initial cost, a 71% increase. State records show Michigan would go on to add millions more, bumping the cost of Deloitte’s initial contract to $124.1 million.

The audit said maintaining the contract would result “in significant additional costs.”

Sutfin said that “the state is now fully capable of operating and maintaining Bridges independently.”

Deloitte’s in Michigan — worth $197.4 million — is set to expire in 2030.

Noon applied for Medicaid in August, she and Kolosova said. In September, the Michigan Department of Health and Human Services sent a notice denying her coverage, citing incorrect income information and stating she wasn’t disabled, according to Kolosova and state documents reviewed by ºÚÁϳԹÏÍø News.

Noon said that when she called the state for help, state workers “didn’t know anything about” the Medicaid program she had applied to, Freedom to Work.

“I can’t tell you how many times I just wanted to give up,” she said.

For some people with disabilities, Medicaid is supposed to count only half their earnings when assessing whether they should receive benefits. That didn’t happen. Kolosova said she thinks Michigan’s eligibility system didn’t identify Noon as disabled, even though the state “already had all the information they needed” to show she was.

By failing to recognize her disability, the state used the wrong income formula and said Noon earned too much to qualify for Medicaid, she added. Deloitte and Michigan declined to respond to a detailed list of questions about Noon’s experience.

Kolosova said Disability Rights Michigan has seen a growing number of calls from people about Freedom to Work benefit denials. “Maybe two or three a month,” she said.

“There’s something wrong with the system if they’re relying on individual caseworkers to catch this,” Kolosova said. “The system needs to work.”

Enrolled in the Wrong Coverage

Noon’s experience isn’t the first time in recent years that people with disabilities have been denied benefits by Deloitte-run eligibility systems.

In Texas in 2023, Lilly Livingston, who has Down syndrome and is now 22, was abruptly cut off from Medicaid benefits, according to Livingston’s mother, Marie. She has undergone numerous surgeries to reconstruct her severely misaligned jaw, which caused sleep apnea and impaired her speech and chewing ability. She relied on an array of Medicaid services, including speech and occupational therapy.

When Livingston lost benefits, she was wrongly enrolled in Healthy Texas Women, a limited program that provides breast and cervical cancer screenings and family planning services.

“Trying to fix that was a nightmare,” Marie Livingston said.

Terry Anstee, an attorney with Disability Rights Texas, intervened.

In a September 2023 email with the subject line “URGENT,” Anstee begged a Texas Medicaid eligibility worker for help.

Some unknown “error” had occurred and stripped Livingston of her benefits, Anstee said in an email he sent to a state Medicaid staffer. “Lilly has had 2 major surgeries, and her recovery is contingent on Medicaid.”

It was clear that Livingston qualified for Medicaid through multiple paths, Anstee said: “It never made any sense.”

Deloitte declined to respond to a detailed list of questions about Livingston’s case. Jennifer Ruffcorn, a spokesperson for Texas Health and Human Services, confirmed that Livingston was erroneously enrolled in Healthy Texas Women. However, Ruffcorn said, Livingston did not experience a lapse in Medicaid coverage in 2023.

Anstee disputed the state’s characterization: “A glance in the system by a Texas HHS press officer or other staff 3 years after the fact may not tell the full story or show the issues that Ms. Livingston endured in August and September 2023. Ms. Livingston experienced lapses in coverage.”

The problem Livingston encountered in Texas was also reported in Michigan.

In 2024, mental health services advocates in Michigan raised red flags about a similar error: People with disabilities were being enrolled in a limited Medicaid program covering sexual health and family planning services. Plan First covers only services and treatment for sexually transmitted infections. It doesn’t provide the comprehensive coverage that people with disabilities require.

But some enrollees were “being automatically enrolled in Plan First,” Malcolm Kletke, a lobbyist representing the Community Mental Health Association of Michigan and other mental health providers, wrote to a Michigan health official, according to emails obtained by ºÚÁϳԹÏÍø News through a public records request.

These enrollees had “long received Medicaid due to their disability,” and getting enrolled in the wrong plan meant losing access to “services essential to their recovery and quality of life,” Kletke wrote in September 2024 to Amy Epkey, a senior deputy director of the Michigan Department of Health and Human Services.

In fact, the state’s own records show that Medicaid enrollment for those with disabilities did decline.

Over roughly four years, enrollment in the Medicaid category that includes people with disabilities , according to the Michigan House Fiscal Agency, which provides nonpartisan analysis to lawmakers. The drop was unusual given people generally leave the program because of death or having recovered from a temporary disability, and it’s unlikely those numbers would balloon, said Robert Sheehan, who was the mental health association’s CEO at the time.

Sutfin said the state examined the decline in enrollment and found “several contributing factors, including post‑covid renewal patterns, changes in beneficiary circumstances and movement to other coverage categories.”

After inquiries from ºÚÁϳԹÏÍø News, the Michigan health department acknowledged in April that it had made changes to “address concerns raised by advocates.”

Michigan’s computer system now prevents approval of Plan First benefits until all other coverage options are evaluated, Sutfin told ºÚÁϳԹÏÍø News. Sutfin said the changes were implemented but “not to correct system errors.”

Sutfin said the state submitted a change request to Deloitte to address this problem. The fix was implemented in January 2025.

Until presented with Kletke’s email, the state had denied there were problems related to Plan First.

Even after the state addressed that issue, other problems persisted.

Noon’s coverage denial notice arrived in September. She fought with the state for months to reverse its decision, “paying cash for all of the medicines through these appeals over and over and over again.”

It was only in January that she was approved.

“I literally cried,” Noon said. “It was a really big deal.”

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

Overnight, a nurse aide walked into their room and saw blood splattered on the floor, walls, and ceiling, according to a grand jury transcript. Cecchetto’s face “looked twisted and smashed,” the aide testified. A Banning city police officer testified that Timaloa, 77, told him that he had punched Cecchetto twice.

“He just kept saying that Attilio was being too loud: ‘He talks too much,’” the officer said.

Cecchetto died two days later from blunt force facial trauma.

“You get placed in a facility like this to be taken care of, not to be murdered,” one of his sons, Gino Cecchetto, said in an interview. “This was completely preventable at many different points.”

Timaloa pleaded not guilty to assault. The charges were later upgraded to murder, and a judge ordered a mental health evaluation. The judge will rule as early as August on whether Timaloa is competent to stand trial.

PACS Group, the nursing home chain that owns Sunrise, denied negligence. “We strive to provide quality care to everyone we serve, and our hearts continue to go out to the Cecchetto family for their loss,” PACS spokesman Brooks Stevenson said in an email.

In nursing homes primarily occupied by impoverished people as well as posh assisted living facilities that cost upward of $10,000 a month, agitated residents have shoved, punched, bit, and kicked others. They have wielded canes, walkers, pens, a plate, a mop stick, a shoe, a belt buckle, and even the footrests of wheelchairs as weapons, federal inspection reports show.

How often these altercations take place nationwide is unknown, but an of 14 assisted living facilities in New York state led by Cornell University researchers estimated 1 in 7 residents experienced aggression within a month, including verbal, physical, or sexual acts. Their of 10 New York state nursing homes estimated 1 in 5 residents experienced an altercation in a month. Researchers have found that these assailants are to have dementia.

The diseases that cause dementia can impair brain circuits involved in impulse control and threat perception, raising the risk of aggressive behavior. Residents with Alzheimer’s disease and other dementias constitute more than living in these settings, many of which include specialized units.

Often, altercations involving a resident with dementia erupt after danger signals are missed or ineffectively addressed, according to a ºÚÁϳԹÏÍø News examination of court records, police reports, and state and federal inspection reports.

Since the start of 2024, the federal Centers for Medicare & Medicaid Services has faulted nursing homes at least 700 times for failing to protect residents from physical, sexual, or verbal abuse by other residents, CMS inspection reports show. The federal records do not include assisted living facilities, which are regulated by states.

In the first three months of this year, CMS cited nursing homes more often for resident-to-resident abuse than for any other type of abuse, neglect, or exploitation, including abuse by employees, the reports show.

The long-term care industry says not every clash can be averted. Presbyterian Homes & Services, a nonprofit Christian chain of senior living facilities, said in a statement: “Caring for individuals living with advanced dementia is complex, and behaviors can change in ways that are difficult to fully predict or prevent, even with clinical interventions in place.”

Eilon Caspi, a and researcher who studies resident-on-resident altercations, said that usually there is a specific unmet need that precedes an altercation. “In the vast majority of incidents,” he said, “there are warning signs in the months, weeks, days, hours, and sometimes minutes and seconds prior.”

Fertile Battlegrounds

One about Alzheimer’s, the most common dementia disease, holds that as the brain’s networks deteriorate, the balance shifts between the prefrontal cortex, which helps govern judgment and self-control, and limbic regions including the amygdala, which helps process fear and threat responses.

As cognition clouds, people lose the ability to understand what is happening around them and to put distress into words, researchers say. Pain, infection, medication side effects, and other physical and emotional distresses through shouting, intimidating gestures, kicking, pushing, or punching. Long-term care facilities can be triggering environments, with intimate care often delivered by a changing stream of aides whom residents can’t recognize. Amid noise, close quarters, and rigid routines, interactions become flash points.

“You don’t feel safe, because you don’t know these strangers who are coming in and taking off your clothes,” said Al Power, a geriatrician and an advocate for alternative models of care for people with cognitive issues. “These things will be distressing to anybody.”

The Cornell researchers found verbal altercations were the most common type of aggressive interaction but estimated 4% of assisted living residents and 5% of nursing home residents in their studies experienced physical assaults in a month.

Another Cornell study found that Connecticut police were called to nursing homes for more often than allegations of staff abuse, theft, and residents wandering away without supervision combined. A national analysis of survey data from the Centers for Disease Control and Prevention calculated in assisted living facilities engaged in physical aggression or abuse toward other residents or staff members.

Many of the physical aggressions ºÚÁϳԹÏÍø News identified in CMS inspection reports were perpetrated by residents with diagnoses of dementia, schizophrenia, or other cognitive disorders. In some physical altercations, both residents were aggressors, while other fights were one-sided. Sometimes the residents were roommates.

Laura Mosqueda, a geriatrician at the University of Southern California’s Keck Medicine in Los Angeles and a senior adviser to the National Center on Elder Abuse, said: “What worries me is that we just end up blaming two people who have either cognitive impairment or severe, uncontrolled mental health issues, when they’re supposed to be in an environment where people are safe.”

‘Only a Matter of Time’

Gladys Lynch, a retired department store accountant, transferred into the memory care unit at Harbor Crossing in White Bear Lake, Minnesota, in September 2025. Her monthly cost was more than $10,000, according to an invoice provided by the family.

One of Lynch’s daughters, Rebecca Norton, installed web cameras in her room and often saw another resident inside. “Every day I looked at it, this woman would be walking into my mom’s room, harassing her, digging through her things, using her bathroom, yelling at her,” Norton said in an interview. She informed Harbor Crossing’s administration, and the facility said it would start locking her mother’s door.

Norton emailed a Harbor Crossing administrator a list of issues with her mother’s care. “My biggest concern,” she wrote, was that her mother’s door was not consistently locked and the webcam showed the woman had again entered, rummaged through the bathroom, and taken a couple of adult diapers.

Unknown to Norton, Harbor aides had raised concerns about the other resident, who like Lynch was new to Harbor Crossing’s memory unit, according to a . Diagnosed with Alzheimer’s, severe dementia with agitation, depression, and anxiety, the woman was confused, had difficulty communicating her needs, and hit aides.

Aides repeatedly reported that the woman had “ongoing aggression, entered other residents’ apartments, invaded others’ personal space, and was difficult to redirect,” the health report said. They said medications had been ineffective and pressed for new ones. The report said one nurse told the woman’s doctor it was “only a matter of time before” she “hurts another resident.”

Captured on Camera

On the last day of September, she entered Lynch’s room and resisted leaving, the state report said. The next morning, she reappeared. Video of the incident was described in the police and state reports and reviewed by ºÚÁϳԹÏÍø News. It shows Lynch guided the woman out and appeared to attempt to lock the door, but the woman opened it and returned once more.

The woman declared it was her house, went into Lynch’s bathroom, used the toilet, and then returned to the room Lynch was in. Lynch can be seen repeatedly pressing the alert pendant around her neck to signal nurses for help.

The video shows the woman was almost out of her apartment door when she attempted to touch an object near the door. Lynch put her hands up to block her. The woman slapped at her hands and said, “I’m going to kill you if you don’t quit it.” She pushed Lynch, who fell, her head hitting the floor and blood seeping out.

Aides arrived 13 minutes after she had initially pressed her pendant, the state report said. Lynch suffered a brain hemorrhage and fractures to her eye socket and ribs, according to the state report. She died in the hospital five days later at age 96; the medical examiner’s office declared it a homicide.

Norton said her mother was kind and pleasant and never combative. “My mom deserved better than what they gave her,” she said.

Prosecutors declined to bring charges, according to the police report. The Harbor Crossing was responsible for neglect because it was aware the woman “exhibited violent and aggressive behaviors” and yet had failed to put in place effective interventions. Harbor Crossing has requested the state reconsider its findings.

In June, Suzanne Scheller, the attorney for Lynch’s family, filed a wrongful death lawsuit against Presbyterian Homes, which owns Harbor Crossing.

Presbyterian said in a statement: “We are deeply saddened by the loss of Ms. Lynch, and our thoughts remain with her family and all those impacted.” It declined to comment further on the incident or the lawsuit.

Preventive Tactics

Geriatricians, researchers, and resident advocates say long-term care homes should to reduce the risk of altercations, including closer supervision of residents at high risk, relocating them closer to nursing stations, separating residents with repeated conflicts, and adjusting roommate assignments or seating in shared spaces.

Each resident should have a care plan, and homes should train staff to be alert to a resident’s triggers and intervene quickly, dementia specialists say. Organized activities are essential to keep residents occupied and engaged. Antipsychotics and other psychotropic medications are often prescribed, but they can increase the risk of falls, strokes, and .

An aide can be assigned to watch a particularly challenging resident one-on-one, but many places lack enough staff for protracted, dedicated supervision. Some assisted living facilities will tell a resident’s family they must hire a personal aide, who can cost thousands of dollars extra each month. In extreme situations, facilities might send a resident to an emergency room for evaluation or to a psychiatric hospital, or .

Camille Russell, who served as Kansas’ long-term care ombudsman until 2024, said she observed nurses and aides were often “woefully undertrained” in basic elements of dementia care.

“We’ve gotten too far away from making decisions that are caring decisions,” Russell said. “There has to be a balance, and the balance has gotten too far to the profit side.”

A Debilitating Kick

Many physical altercations between residents result in a scratch or a bruise, but nonfatal scraps can leave permanent damage on deeply frail residents.

Linda Twiddy’s first weeks in a Chesapeake, Virginia, memory care unit in August 2024 were happy, her daughter, Barbara Howerin, said in a May interview. Twiddy, a former church secretary with vascular dementia, sang along with a visiting church choir, decorated pumpkins, and visited a cat cafe. The facility, The Vero at Chesapeake, charged Twiddy a one-time $6,825 move-in fee and monthly charges of $7,475, according to the lease.

Seven weeks after Twiddy started living there, a nurse called Howerin. She told her that her mother had been kicked in an altercation with another resident and was being sent to the hospital.

When Howerin arrived at the hospital, she was shocked by the extent of the injury. “It was like 10 inches long by 6 inches wide, the whole front of her shin,” she said. “The calf was just like dangling down.”

According to an internal facility incident report the family obtained, an aide heard Twiddy scream for help and raced over to see a male resident with dementia trying to hit Twiddy as she sat on the floor in “a pool of blood.” The report said, “Linda was screaming get him away from me, he pushed and kicked me.”

The man had prior episodes of aggression, according to documents Twiddy’s family obtained in a lawsuit they brought against The Vero in Chesapeake Circuit Court. At his previous facility, a progress note from 2023 stated, he was “becoming very aggressive in tone and actions to residents and staff.” He “grabbed another resident by the wrists and pushed her,” according to the note. He was sent to an emergency room for evaluation of agitation, according to a hospital report. It did not make clear whether he was discharged back to the facility or elsewhere.

Agitation Tied to Pain

The male resident’s medical records at The Vero said he was diagnosed with late-onset Alzheimer’s disease, agitation, and anxiety, according to his doctor’s deposition. He had chronic pain in his back and trouble sleeping. He could answer simple yes-or-no questions but had trouble providing more extensive answers and couldn’t communicate that he was in pain, she testified. His behavioral changes usually occurred when he had a urinary tract infection, the doctor said.

When he was agitated, aides could sometimes calm him by turning on the television so he could watch his beloved New England Patriots, one aide testified in a deposition. A former aide said she tried to avoid dealing with him altogether. “If you go up to him and he was agitated, he’d reach out to try to grab you,” she testified. “If he had that cane, he would swing that cane or he would punch at you.”

In a court filing, The Vero denied allegations by Twiddy’s family that it should have protected residents from him. The filing said The Vero complied with all standards of care and that any injuries Twiddy sustained “were caused by her own negligence” or acts of others.

In their investigation of the incident, Virginia regulators alleged The Vero had for the health, safety, and well-being of its residents. The inspection report said The Vero pledged to appropriately staff the memory care unit based on the number of residents and to ensure someone completed rounds at least every two hours during sleeping hours.

Twiddy underwent three surgeries at the hospital for her leg, including a skin graft, then spent a month in rehabilitation. “She was never able to walk again,” her son, Doug Twiddy, said in a May interview.

The family moved Linda Twiddy to a different memory care facility where the nursing station had a clear view of all the rooms. She lived there until her death earlier this year.

The lawsuit was settled on confidential terms in early June. Carlton Bennett, the family’s attorney, declined to comment. In an email, Lauren Rogers, a spokesperson for Sinceri Senior Living, which operates The Vero, said the company was pleased the legal case had been resolved but could not comment further, citing confidentiality and patient privacy.

“The Vero at Chesapeake is committed to providing a caring, supportive environment where resident health, safety, and well-being remain our highest priorities,” she said.

A History of Violence

After Attilio Cecchetto was fatally bludgeoned at Sunrise Post Acute, his adult children and their attorney, Jody Moore, discovered disturbing details about Sam Ato Timaloa. He had been imprisoned in 1999 after being convicted of raping an underage girl and sentenced in 2008 to 24 years in prison for attempted murder involving domestic violence, according to Riverside County court records. His public defender declined to comment.

Cecchetto’s sons, Moore, and her colleagues at Moore Hutchins Moore also learned more about the home’s owner, PACS Group, a publicly traded company with more than 300 long-term care facilities. Last year, PACS earned $191 million on revenue of $5.3 billion, according to its .

In the Cecchettos and their father’s widow filed against PACS, they accused the company’s founders, Jason Murray and Mark Hancock, of draining resources from their nursing homes to pay for the chain’s expansion and swell their personal wealth.

The two had earned more than $650 million through stock sales since taking the company public and bought two private luxury jets, according to the lawsuit and securities filings. PACS has also purchased corporate sponsorships for Utah sports teams even though it owns no nursing homes in the state, the lawsuit said.

California regulators fined Sunrise $120,000 for Cecchetto and for not taking Timaloa’s articulated dislike of noise into account when assigning rooms. Medicare issued its own $62,810 fine.

In responding to the Cecchettos’ lawsuit, PACS denied negligence for his death and alleged he “failed to exercise ordinary care on his own behalf for his own safety.” It has sued to overturn the $120,000 state fine, saying it was issued too late and that Sunrise “did what might reasonably be expected of a long-term health care facility licensee acting under similar circumstances” to comply with state rules.

The Cecchettos’ lawsuit asks for a judge to impose robust procedures PACS homes must follow for admissions, staff training, room changes, and the reporting of altercations between residents. The suit asks for a court-appointed monitor to oversee compliance. In its written statement to ºÚÁϳԹÏÍø News, PACS said “important context” would come out during the process and declined further comment.

In an interview, Cecchetto’s three sons, Dino, Gino, and Marco Cecchetto, described their father’s life. He spent his childhood on a farm in Italy, growing up under Benito Mussolini. After World War II he moved to Canada, where he learned to tile and lay marble and terrazzo, a decorative flooring material made of chips of stone, glass, or other materials embedded in cement or resin. He relocated to California in the early 1960s, became naturalized, and worked as a tile journeyman and a contractor for decades.

“We don’t want this to happen to somebody again,” Gino Cecchetto said. “With the life he led, he deserved a quiet, dignified death. Instead, he ended his life in pain and fear.”

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Her team tends to “cringe” anytime they hear about patients having to fill out lots of paperwork, like when applying for Social Security Disability payments, because it can be a difficult, burdensome process.

Thornton tries to support her patients, she said, but understands the limits of her training.

“A lot of times the forms are so complex that I don’t really know what’s the true definition of what this form is asking me,” she said. “We refer them to a disability provider.”

Doctors including Thornton worry they’ll see more of those kinds of requests because of coming changes to Medicaid, the government health insurance program for people with low incomes or disabilities. Starting Jan. 1 in most of the country, some enrollees — mainly adults without dependents — must prove they’re working or performing other qualifying activities 80 hours a month.

issued in June say people can obtain an exemption if they’re “medically frail,” or too sick or disabled to work, which may require them to submit documentation from a medical professional. That standard prompted a lawsuit at the end of June from dozens of mostly Democratic-led states and has Thornton worried it could force her and her staff to assess things like how much a patient can lift or how far they can walk.

“If I’m asked, ‘Is this person medically frail?’ What does that even mean?” Thornton said. “I don’t know, and I’ve been doing this for 25 years.”

Last year’s GOP tax-and-spending law known as the One Big Beautiful Bill Act established the work rule, which will affect an estimated when more states start enforcing it. The mandate is expected to cause a larger increase in the number of people without health insurance than any other part of the law, a health information nonprofit that includes ºÚÁϳԹÏÍø News.

Doctors say they aren’t trained to accurately assess whether someone’s health keeps them from working. Many don’t have time to handle another administrative task that takes them away from patient care. And being involved in whether someone gains access to a public benefit undermines the doctor-patient relationship, several doctor groups and physicians said.

“When you introduce unnecessary, non-evidence-based, confusing, and bureaucratic policies like this into clinical care, it just raises the level of moral distress for providers,” said Christopher Chen, a senior healthcare adviser at the consulting firm Manatt.

The Centers for Medicare & Medicaid Services declined to respond on the record about doctors’ concerns. But the agency confirmed that enrollees may need to get documentation from a clinician to prove they’re too sick to work and said states would make final determinations.

The Trump administration has previously said states should use available data sources — such as medical claims and payment data — before making patients submit proof of medical frailty from a provider.

“Documentation should be relatively easy to provide,” Mehmet Oz, the CMS administrator, said during a June 1 press call.

But deciding whether a patient is too sick to work is a subjective, high-stakes decision, said Chen, who also practices as a hospitalist at Valley Medical Center in Renton, Washington.

“We’re trained to take care of people,” he said. “We’re trained to learn about someone’s symptoms, make diagnoses, treat them. We’re not trained to make these kinds of work determinations.”

When they apply and every six months after, Medicaid enrollees subject to the rule will have to prove that they’re performing the minimum monthly hours of qualifying activities — or will likely have to prove as frequently that they qualify for an exemption.

If states can’t find sufficient evidence that someone is too sick to work, that person will be able to self-attest to it under penalty of perjury — but only for a short time. States may take someone’s word that they’re medically frail twice in 2027 and only once in 2028.

Last month, 25 mostly Democratic-led states over the final regulations, arguing the medical frailty standard would be too hard for enrollees to meet — and for states to assess.

The standard, they argue, requires state Medicaid agencies to “take on the role of occupational medicine experts” or adds that burden to physicians who are not necessarily trained in occupational medicine.

CMS declined to comment on the litigation.

The Trump administration has crusaded against fraud in government health programs including Medicaid. It recently — including medical professionals — over more than $6.5 billion in alleged fraud schemes.

CMS has said it will keep a close watch on how states administer the work requirements and may take corrective action if states step out of line.

That has doctors concerned about the potential repercussions if they incorrectly assess whether someone is too sick to work, as farfetched as those worries might be, said Rahul Vanjani, a primary care and addiction medicine physician and researcher at Brown University.

“We, using our imaginations, wonder if someone is auditing these forms in the background and if they’re going to reach out to the licensing board.”

The country is short of primary care providers, and it could be hard for people seeking an exemption to find a clinician to help them document that they’re too sick to work, doctors said.

It will be even more challenging for someone without insurance, said Jennifer Wagner, who researches Medicaid eligibility at the left-leaning Center on Budget and Policy Priorities.

“How could an applicant who doesn’t have health coverage get a doctor’s note?” she asked.

The American Medical Association, the nation’s largest professional association of doctors and medical students, lobbied federal officials to change the standard for documenting medical frailty in the days before the final regulations were made public.

In May, the AMA sent to Oz, the CMS administrator, arguing that forcing doctors to attest to their patients’ ability to work wouldn’t just be an administrative headache but would affect the way they interact with those in their care.

In a statement, the association’s president, Willie Underwood III, said the work rule “transforms the clinical encounter into an eligibility gatekeeping process.”

“Patients will likely sense that shift,” he said. “And if they begin to suspect that what they share with their physician could affect their coverage, the conditions for open and honest communication will start to break down.”

Doctors have a fixed amount of time to spend with patients and would rather focus on treating medical conditions than filling out forms, especially ones that put them in a position to “represent the state,” said John Ayanian, an internal medicine physician and researcher at the University of Michigan.

“Their first obligation is to serve the best interest of their patients,” Ayanian said.

Lauren Davis, an attorney with Community Legal Services of Philadelphia, helps clients navigate other public benefit programs, such as the Supplemental Nutrition Assistance Program, which has a similar work rule. Enrollees can get an exemption from it if they’re too sick to work.

She recalled a client with a cognitive condition that affected her memory. The client’s doctor wasn’t comfortable filling out an exemption form without seeing her in person, but she kept forgetting to make an appointment and eventually gave up, said Davis, who worries Medicaid enrollees could face similar barriers to getting exemptions.

“This person is eligible,” Davis said. “The reason that they’re not able to get what they need to show that they’re eligible is because of their medical condition.”

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

“It was just too perfect,” said her mother, Shenelle Ball-Green, of those calm, hot weeks.

Then, early on July 5, four days shy of her scheduled cesarean section, Ball-Stribling began experiencing complications from preeclampsia, a potentially life-threatening blood pressure disorder. Speeding up to 110 mph, her husband drove her to the nearest hospital 25 miles away from their home in Belzoni, a Mississippi Delta town of about 1,900 people.

Minutes before reaching the facility, Ball-Stribling suffered a seizure in the passenger seat. Her husband pulled her from the car and performed CPR on the side of the road. It was too late. She and the couple’s unborn daughter, Harper, died on the side of U.S. Route 49.

The tragedy might have had a different outcome if the hospital in Belzoni, a five-minute drive from Ball-Stribling’s home, hadn’t closed 13 years ago. Today, Humphreys County has no hospital, no emergency room, no urgent care clinic, and no county health department. It is one of more than in the U.S. that have fully closed since 2005.

In Belzoni, self-proclaimed “The Heart of the Delta,” and its surrounding area, communities are close-knit, and Harmony’s story is well known. Now, her death has galvanized local and state leaders determined to bring a hospital back to the county that has suffered without one.

“It was a tremendous eye-opener for this community,” said state Rep. Timaka James-Jones, a Democrat who represents the district that includes Belzoni and is Ball-Stribling’s aunt. “It brought to light how we are so without.”

Poverty often shapes the health disparities Humphreys County residents experience. Approximately under age 65 lack health insurance coverage, compared with about 1 in 11 people nationwide. Humphreys County also has the of any Mississippi county, reflecting the economic challenges many residents face. These disparities are evident in the county’s infant mortality rate, which is at roughly 15 deaths for every 1,000 births.

James-Jones has watched these circumstances influence the lives — and deaths — of her loved ones. She said she wants to see a hospital reestablished before her four-year term is up in early 2028.

But that may be easier said than done. In Belzoni, local leaders hoping to restore healthcare services face a tangled web of policy challenges that are especially demanding for a small town with limited resources. Its story reflects what many : Once a rural community loses a hospital, bringing it back can be nearly impossible.

Humphreys County’s Healthcare Losses

Humphreys County Memorial Hospital opened in Belzoni in 1951 as part of a nationwide hospital building boom fueled by a Truman-era law called the Hill-Burton Act. The legislation provided billions of dollars in grants and loans to build and modernize healthcare facilities. At the time, had no hospital. When the building boom began to subside by 1970, in Mississippi had at least one hospital.

But by the 2000s, many rural hospitals in the U.S. confronted financial difficulties. Low patient volumes, an increase in outpatient care, and meager revenues left many on precarious footing. Many had high rates of uninsured patients or those covered through government programs such as Medicaid, which typically reimburse providers at lower rates than commercial insurers.

Humphreys County’s hospital was among those struggling facilities. It was burdened with , and county officials sold it in 2008 to a private company. It was renamed the Patients’ Choice Medical Center. The hospital shut down five years later after Ray Shoemaker, the company’s CEO, was convicted on healthcare fraud charges related to another hospital he owned.

“I do hope they reopen,” Shoemaker wrote in a recent text message to Mississippi Today. “The community needs a hospital.” He said he stepped down from the company before going to prison in 2012.

In 2017, the University of Mississippi Medical Center partnered with the county supervisors and U.S. Rep. Bennie Thompson, a Democrat whose district includes Humphreys County, to secure a from the U.S. Department of Agriculture to open an after-hours acute care clinic in Belzoni. The clinic shut down in 2020, and UMMC officials declined to say why.

G.A. Carmichael Family Health Center, a Canton-based federally qualified health center with five other locations in Mississippi, took it over but did not maintain the extended hours, again leaving Humphreys County residents without after-hours care. Other public health services in the county have closed outright. Three years ago, the county’s health department stopped providing clinical services, said Greg Flynn, a spokesperson for the Mississippi State Department of Health. The county department closed entirely last year, citing staffing shortages and low patient volumes.

In the years since the hospital closed, the county has lost a fourth of its population, falling to 7,000 people, . James-Jones said she does not believe the community can experience growth until healthcare services are reestablished.

“I don’t know how I can see us growing any other way,” she said.

‘Something’s Way Better Than Nothing’

Months after losing her daughter and unborn granddaughter, Ball-Green climbed the steps of the stately, tan, brick Humphreys County Courthouse to attend a crowded Board of Supervisors meeting.

She stood at the dais and urged the supervisors to reestablish emergency healthcare services in the county to protect other residents from the fates of her loved ones.

“I wanted to let them know at any given moment that could be your child, your mother,” she said. “We’re a small town. Everyone knows everyone.”

She remembered the disappointment she felt when the supervisors told her there was nothing they could do. But when the board’s makeup changed after the 2023 elections, she said, she saw these attitudes shift.

Among the newly elected officials was Reggie Pinkston, who is now the president of the board and previously worked as an EMT when the hospital was open. His own family has suffered the consequences of limited healthcare access. A cousin living in Louise, a town about 20 miles south of Belzoni in the county, had a stroke in 2021 and waited an hour for an ambulance to arrive. She died two days later.

Pinkston said witnessing residents’ delays in care has made expanding access to healthcare services one of his priorities.

“We’re losing too many people in our county because of lack of healthcare,” Pinkston said.

The board enlisted several consultants to develop a strategy for expanding healthcare access and identifying funding sources to support these efforts. In late 2025, Thompson secured for Humphreys County through the congressional Community Project Funding process, which allows lawmakers to request federal support for specific projects.

The funds will be used to expand services at G.A. Carmichael’s Belzoni location in a county-owned building on U.S. Route 49, Pinkston said. Expansion plans include extending its hours of operation overnight to 5 a.m., purchasing equipment, and a possible renovation of the facility. It could begin its expanded operations by September, said James Coleman Jr., the health center’s CEO.

Establishing an after-hours urgent care clinic is a starting point toward reestablishing emergency care services or a hospital, James-Jones said.

“Something’s way better than nothing,” she said.

‘Not for the Faint of Heart’

Despite that encouraging first step, Humphreys County faces steep obstacles to opening a hospital.

At the University of North Carolina-Chapel Hill, George Pink is a senior research fellow at the Cecil G. Sheps Center for Health Services Research and tracks rural hospital closures across the U.S. He said he’s aware of only a few communities that have successfully reopened a hospital after it closed.

“I can count that on one hand,” said Pink, who knows of roughly five such examples.

Communities face significant hurdles to reestablishing a hospital, including securing financing for construction or renovation, recruiting qualified staff, and covering substantial operating expenses during the licensing process before the facility can treat patients and generate revenue, said Brock Slabach, the National Rural Health Association’s chief operations officer and a former rural hospital administrator in southwestern Mississippi.

“Reopening a hospital is not for the faint of heart,” Slabach said. “Once they close, it’s very difficult to reopen them.”

To finance a potential hospital project in Humphreys County, local and state leaders said they plan to seek funding through the Rural Health Transformation Program, a federal initiative that will distribute $50 billion to states over five years. The federal government allocated Mississippi in December for the program’s first year.

The program is meant to offset budget cuts passed into law last summer that could harm rural hospitals. Republicans’ One Big Beautiful Bill Act Medicaid spending by $911 billion over 10 years and increase the number of uninsured people by 10 million, according to Congressional Budget Office estimates. Mississippi hospitals are beginning in 2029, according to Cindy Bradshaw, executive director of the Mississippi Division of Medicaid.

But , the program’s funding cannot be used for construction or major building expansions. Officials said the county will instead consider applying for funds through the program to support the recruitment of healthcare professionals.

The federal Rural Emergency Hospital designation is another way rural communities can keep emergency and outpatient services. Hospitals in that program receive over $3 million annually from the federal government and a higher Medicare reimbursement rate, but they .

Research by Pink’s team shows that many hospitals that converted to the model, which was established in 2023, saw an .

But there’s a catch. To receive the designation, a hospital must have been open in 2020, making Humphreys County ineligible. Mississippi’s junior U.S. senator, Republican Cindy Hyde-Smith, introduced legislation in 2024 to to 2014, a threshold that would have still excluded Humphreys County.

James-Jones said county leaders have urged Hyde-Smith to amend the proposed legislation so Humphreys County could qualify. Hyde-Smith did not respond to a request for comment for this article.

For county leaders, the path to widening healthcare access means navigating a thicket of state and federal policies, funding streams, and regulatory hurdles.

Some recent state-level policy changes have created opportunities for healthcare expansion in Humphreys County. In March, Republican Gov. Tate Reeves exempting Humphreys County from Mississippi’s certificate of need requirements, which are meant to prevent unnecessary healthcare expansions.

The exemption could make the county more attractive to prospective healthcare providers. But the financial challenges that contributed to the closure of Patients’ Choice Medical Center in 2013 remain, and Mississippi lawmakers have continued to reject Medicaid expansion, limiting a potential source of reimbursement for rural hospitals and clinics.

Industry officials expect hospitals’ financial pressures to intensify as Medicaid funding cuts take effect. The latest challenge is predicting how these cuts will affect the bottom lines of these facilities and whether additional cuts will come in the future, said Richard Roberson, president and CEO of the Mississippi Hospital Association.

“If someone’s trying to run a business, they’ve got to be able to know what those numbers look like,” Roberson said. “And it’s really hard to try to project that out right now.”

‘Now I Understand’

For Ball-Green, giving in to these obstacles would be a disservice to the Humphreys County residents who face health emergencies similar to the one her daughter experienced.

It has been five years since the funeral, but Ball-Green remembers it clearly. The day was stormy, but attendees brightened the gathering by wearing yellow, Ball-Stribling’s favorite color.

As friends and family gathered to pay their respects, her mother thought back on a relative’s funeral four months earlier. At that service, Ball-Stribling sang the gospel classic You Are My Strength to a roomful of mourners.

“She was singing, and she looked at me,” Ball-Green said, describing a peaceful but eerie expression on her daughter’s face in that moment — a sign of something to come, though she didn’t yet know what. “She turned around, and it was just that look, you know?”

Months later, as she sat at her daughter’s funeral, she began to interpret the foreboding glance differently. She came to believe it was a sign that Ball-Stribling’s gift for helping others by sharing her story would not end with her death.

That purpose had taken shape years earlier in her work as a teacher and continued as she shared about her fertility struggles and IVF journey in the final months of her life. Ball-Green said the community became deeply invested in her and Harper’s story.

In the years since, this gift has endured, she said. Ball-Stribling’s story has continued to resonate throughout Humphreys County, serving as a reminder of what residents stand to lose if they do not reopen the hospital.

“I think back on when she looked back at me,” Ball-Green said. “Now I understand.”

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

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

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

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

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

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

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

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

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

‘Zero Faith’

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

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

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

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

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

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

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

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

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

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

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

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

‘At War’ With an Insurer

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

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

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

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

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

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

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

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

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

Denial After Approval

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

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

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

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

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

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

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

‘Significant Work Ahead’

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

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

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

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

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

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

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

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

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

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

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

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

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When Gov. Gavin Newsom, using his , refused to extradite a physician accused of prescribing and mailing abortion pills to a Louisiana woman, he said California would “not ever” allow “extremist politicians” to punish its doctors.

Newsom, who is considering a run for president, has long championed reproductive rights, but state lawmakers in the Democratically controlled California legislature know future governors might not have the same political beliefs.

Republican gubernatorial candidate Steve Hilton, a former Fox News host endorsed by President Donald Trump, has vowed to honor these types of extradition requests from other states if he’s elected, Louisiana “is trying to uphold what its people voted for, and California is undermining it.” His opponent, Democrat Xavier Becerra, has said he would deny the requests.

Legislation advancing in Sacramento is the latest chapter in a tit for tat that’s been happening between conservative and liberal states since 2022, when the U.S. Supreme Court overturned Roe v. Wade, ending federal legal protections for abortion.

by state Assembly member Rebecca Bauer-Kahan, which is being heard in committee, would take some decisions out of the governor’s hands, requiring governors to deny extradition requests for healthcare providers who prescribe abortion medication or administer gender-affirming care. It would also shield anyone in California who helped patients travel to California or another state to receive legal care. While opponents cast “shield laws” as an incursion on other states’ authority, supporters of the bill view it as insurance — even with Becerra leading Hilton 52% to 31%, according to by the University of California-Berkeley Institute of Government Studies.

Newsom spokesperson Marissa Saldivar said the governor doesn’t comment on pending legislation. Hilton and Becerra didn’t return calls for comment.

“Protecting providers from prosecution should not rely on shifting political winds or a single person’s decision,” said Alyssa Sherer, a nurse practitioner who spoke in support of the bill at a Senate committee hearing in June. Sherer is also the medical director at Hey Jane, a telehealth medication abortion provider. 

Thirteen states have banned abortion outright, and 28 other states ban abortion somewhere between six weeks and viability. At the same time, other states that allow abortion have enacted shield laws to protect doctors and nurses from liability when they prescribe across state lines.

People living in states with total abortion bans are increasingly getting abortion pills prescribed via telehealth, from 74,000 abortions in 2024 to 92,000 abortions in 2025, according to the Guttmacher Institute, citing numbers from its Monthly Abortion Provision Study.

Critics of shield laws say that states have a legitimate interest in enforcing their own statutes and that such laws represent an attempt by some states, like California, to nullify the legal decisions of others.

“If California says, ‘We’re not going to honor any other state’s laws. We’re going to ship abortion pills into your states. You can’t have a law that says abortion is illegal,’ I don’t know — that doesn’t seem like a workable situation,” said Greg Burt, who is vice president of the California Family Council and has spoken in opposition to shield laws at the State Capitol.

Twenty-one other states and Washington, D.C., have similar shield laws, but Arizona, California, Michigan, North Carolina, and Pennsylvania’s rely on an executive order, which could be reversed by a successor, according to the Guttmacher Institute.

Amanda Barrow, a senior staff attorney at the Center on Reproductive Health, Law, and Policy at UCLA Law, said passing extradition protections would put California on firmer footing, because an executive order “could be revoked by a governor who is anti-abortion or anti-gender-affirming-care.”

Hilton has said he would do just that if elected.

“Just as I wouldn’t want to see Louisiana coming in and undermining something that we voted for here in California,” the GOP candidate told KQED in January. 

During a , Becerra said he was strident about protecting reproductive rights as the state’s attorney general. “Absolutely no,” Becerra said of allowing California physicians to be extradited. 

This year, ±á²¹·É²¹¾±â€˜i to its existing shield laws. And Oregon , including banning law enforcement from cooperating with out-of-state or federal investigations into care that’s legal in the state.

But Republican legislators in conservative states have cast telehealth visits as an end run around their laws. And some have moved to restrict abortion pill access.

The governors of , , and have signed bills this year that criminalize the sale, purchase, or distribution of medication that induces an abortion. Those states make it a felony to provide medication abortion drugs to people who are seeking to end a pregnancy. The laws impose up to 10 years in prison with potentially tens of thousands of dollars in fines.

Mississippi amended the state’s controlled substances code to add abortion pills as a criminal category. Although the state already prohibits abortion broadly, the measure specifically addresses distribution, which could subject out-of-state providers to prosecution.

In January, Louisiana a California doctor, Remy Coeytaux, mailing abortion pills to a patient. Newsom denied the request. Likewise, New York Gov. Kathy Hochul denied Louisiana’s February 2025 extradition request for a .

Texas has taken a slightly different legal tact. Attorney General Ken Paxton, a Republican running for the U.S. Senate, obtained a default judgment of more than $100,000 against the New York doctor targeted by Louisiana, but a , citing New York’s shield law. Neither Paxton nor Louisiana Attorney General Liz Murrill responded to requests for comment. 

Fear of being charged with a crime for providing quality medical care is contributing to physicians leaving medicine, said Sacramento emergency room doctor Kamara Graham, who is vice president of the California chapter of the American College of Emergency Physicians, which is supporting the bill.

“It’s really conflicting and hard for us to weigh that concern of: Will I get extradited and charged and potentially be taken away from my family? Or do I do the right thing for my patient?” Graham said.

The availability of medication used in most abortions could soon change nationwide. Under the leadership of Health and Human Services Secretary Robert F. Kennedy Jr., the Food and Drug Administration it is conducting a safety review of mifepristone, one of two medications in pill form that is used in most U.S. abortions. The FDA maintains the drug is safe and effective.

If the FDA were to decide that mifepristone is not safe, such a ruling would supersede state laws, even in states where abortion is legal. If mifepristone is restricted, many telehealth groups have said they would switch to using only the other medication, misoprostol.

“The elephant in the room is whether the Trump administration, particularly after the midterms, makes some kind of move to put national limits on access to abortions,” said Mary Ziegler, a law professor at UC-Davis who has written several books on reproductive health law.

“Not everything is something that the legislature can solve for,” Ziegler said, “because there’s some uncertainty about how the federal courts are going to react to all of this.”

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It’s a heightened concern for the estimated who are U.S. citizens or legal permanent residents, as new work requirements kick in for the federal-state healthcare program that serves low-income and disabled Americans.

Starting next year in most states, many adults enrolled in Medicaid will have to prove they work, are enrolled in college or vocational courses, volunteer, or do unpaid work for at least .

Advocates say this could pose a significant challenge to Medicaid-eligible farmworkers, who frequently work more than 80 hours a month during harvest season but less in other months. What’s more, outside the harvest season, many workers take on informal jobs in construction, landscaping, or home repair for which they don’t receive formal paychecks that would prove their continuing Medicaid eligibility. Still, they can establish eligibility if they prove their average monthly income over six months is equivalent to at least 80 hours of work at the federal minimum wage.

“Having a work requirement — having to create more paperwork and more proof — is certainly extremely challenging for farmworkers and others who are low-income and who may especially have seasonal jobs, not year-round, and do have periods” when there is no work available, said Alexis Guild, vice president of strategy and programs at .

New Requirements, Additional Hurdles

Agriculture is a , and Americans to put food on their tables. Nearly 60% of those workers are U.S. citizens or green-card holders, according to the . The remaining 40% lack legal status or are otherwise ineligible for Medicaid.

Even among farmworkers with citizenship or legal status, the uninsured rate is three times that of the general population, and most farmworkers with insurance are Medicaid beneficiaries, although participation rates vary by state. According to a , 71%-79% of eligible farmworker households report participation in Medicaid.

The new Medicaid work requirements were a key provision of the One Big Beautiful Bill Act signed last July by President Donald Trump. Under the federal law, and the District of Columbia must implement the requirements by Jan. 1. A few states have the work rule early.

The 80-hour rule applies in states that expanded Medicaid, a process that began in 2014 and was tied to the Affordable Care Act. Following the initial expansions, agricultural workers with legal documentation became to have health insurance, according to a 2021 article in the American Journal of Agricultural Economics.

Immigration Anxieties

The work requirements are the latest in a long list of obstacles placed between workers and the healthcare they’re legally entitled to, Guild said. “Medicaid certainly helps because it alleviates the cost issue,” she said. “But there are still other barriers, such as transportation, taking sick leave, and finding time to visit a health center. All these factors can prevent them from actually receiving medical care.”

For farmworkers with green cards and naturalized U.S. citizens, there is another source of stress: the fear that signing up for Medicaid could put personal information in the hands of immigration authorities.

That’s what worries Luis, a 45-year-old green-card holder and Medicaid recipient who dreams of becoming a U.S. citizen. Luis — who asked to be identified by only his middle name — lives with his wife and daughter in North Carolina, where he has worked in agriculture for nearly a decade.

Speaking in Spanish, he said that when he learned about the work requirements, he knew it would be challenging for him to prove that he works 80 hours a month. “I only work on farms for six or seven months; the rest of the year I work in whatever I can find,” he said.

Republicans in Congress argue that work requirements will reduce federal healthcare spending, encourage nondisabled adults to , and preserve safety net resources for the most vulnerable populations.

Among Hispanic adults enrolled in Medicaid, 67% are already working, according to a 2025 .

The Centers for Medicare & Medicaid Services did not respond to requests for comment for this article. But in June, when its “nationwide framework” to implement the Medicaid work requirements, Administrator Mehmet Oz said it would help beneficiaries “build skills and independence through work, education, job training, or community service, creating new opportunities for themselves and their families.” Federal officials say the new requirements “could reduce poverty by as much as 2.9 million people.”

Chronic Illness

Agricultural work is one of the nation’s , and it is associated with and , including respiratory conditions. A found that 37% of male farmworkers and 47% of female farmworkers in the state had at least one chronic health condition. The new work requirements present one more barrier for those seeking care, advocates said.

“People skip checkups and screenings, and conditions that could be caught early and treated cost-effectively” aren’t, said Adriana Cadena, executive director of .

Emergency rooms often become the “natural” place to go for healthcare, Cadena added. “This drives up waiting times and costs for all of us. … And when people are sick enough that they miss work, it starts a vicious cycle of lost productivity and family economic instability that again threatens all of us.”

A Loss for Families and Children

The new federal rules also require beneficiaries to verify their eligibility at least twice a year, twice as often as previously, creating another potential obstacle.

“Letters can easily be missed, and forms may go unfilled. If people get caught up in the paperwork, they could lose coverage,” said , an assistant vice president at , a nonprofit that promotes an equitable healthcare system.

For farmworkers who travel from state to state, the process can be especially difficult.

“You have to find the time to transfer your coverage and probably find a person or organization that can help you — and that can be really hard when you’re constantly moving,” Cadena said.

The situation highlights the difficulties of navigating a complex system for individuals and families already struggling to make ends meet.

“The result,” Cadena said, “could be the loss of coverage not only for workers, but also for their families and children.”

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“He was on a nasty, dirty ground in front of a store,” recalled Sonja Smith, who is enraged about the circumstances that led to her husband’s heart failure. “He didn’t deserve to die like that.”

Problems started last year when the couple learned the monthly premium payment for their Federal Employees Health Benefits plan would more than double to $307 and their deductible would also go up. They decided to switch Blackman’s primary coverage to CHAMPVA, a health benefits program for dependents of disabled veterans, which had no premium and a $3,000 deductible.

Smith thought she and Blackman had carefully prepared so that the transition between health plans would be seamless. It was anything but.

After the new health plan became active in January, Smith said, Blackman faced one hurdle after another getting approval for the antirejection medications needed to prevent his body from attacking his transplanted heart. Patients who rely on these drugs can develop severe and life-threatening heart issues if they miss even a few days. She said Blackman had enough medication to last only about a month into the new plan year. He told her just before his death that he had run out.

“I screamed at CHAMPVA. I screamed at the Trump administration. I screamed at the overall healthcare system in this godforsaken country,” she said. “Everybody played a part in what happened to my husband.”

The Department of Veterans Affairs declined to comment on the record about Blackman’s case.

While the couple’s situation was extreme, their challenge of trying to continue a treatment is faced by many who shop for cheaper options as health insurance costs have soared across the country. The United States already has a fragmented health system, in which insurers, clinicians, and drugmakers are largely left on their own to hash out the cost of each medication or service. That lack of standardization leads to layers of bureaucracy for patients; moving to a new plan can ensnare patients in a thicket of red tape, keeping them from care.

Making matters more challenging, Congress didn’t renew covid pandemic-era subsidies that helped lower premiums for Affordable Care Act marketplace plans before this year. The Trump administration is also adding hurdles for people to access Medicaid, a state-federal health insurance program for Americans with low incomes or disabilities, so more people may lose their current coverage.

“We’ve basically set up a series of cracks in our healthcare system that we ask people to jump over,” said , an assistant professor of health policy at the Harvard T.H. Chan School of Public Health. “But if you don’t jump over those cracks, you can lose coverage, or lose access to your doctor, or lose access to your medications.”

‘This Is a Lot’

Insurers calibrate plan prices by negotiating rates with individual clinicians, hospital systems, and drugmakers, leading to varying levels of coverage. Plans with lower monthly costs of doctors and hospitals, and less generous drug coverage.

As a result, when patients choose an insurer — or even a new plan with the same insurer — they may lose access to medications or doctors that they have had for years, said , a research professor in health policy at Georgetown University. There are so many ways “patients could get tripped up,” she said. “When you switch to a new insurance company, they’re going to apply their rules.”

In announced by the Trump administration last year, many insurers voluntarily agreed to reduce some red tape by honoring existing prior authorizations for 90 days when a patient switches health plans. As required by law, they also offer resources such as plain-language plan descriptions and searchable online clinician directories to help patients coordinate care, according to , the main health insurance industry trade group.

“The goal is to ensure every member understands their benefits and can access the care they need without interruption,” said Conner Coles, an AHIP spokesperson.

But patients say understanding their benefits can still be a challenge.

Monique Acosta, 54, had to navigate two health insurance changes after she was laid off from her job at a disability nonprofit in October. The heart transplant recipient and cancer survivor said she paid nearly $900 a month to continue her employer coverage under COBRA, the Consolidated Omnibus Budget Reconciliation Act. Then, in January, the Woodbridge, Virginia, resident switched to Medicaid.

During the transitions, Acosta said, she lost coverage for a postchemotherapy drug. So, she changed her care team to qualify for lower-cost medications through a local hospital’s charity program. Then one of her new doctors reduced the frequency of an injection she had gotten for years. During that time, she said, her red and white blood cell counts plummeted and she struggled to recover from a heart catheterization procedure.

Eventually, her new physician upped the frequency of her injections back to twice a month. “He needed to document it so he could see it himself,” Acosta said. “I was very, very fatigued, very weak, and it’s unnecessarily so.”

Acosta said she is putting off a mammogram until she can better understand her Medicaid plan or find a job with better benefits. “This is overwhelming,” she said. “This is a lot.”

Burden on the Patient

Federal regulations, 43 states, and Washington, D.C., have that require health plans to continue covering doctors and drugs when there is a network change, like when a clinician or hospital that a patient goes to is terminated from the insurer’s network of providers.

But Corlette said that not all the protections address the trip wires people face when they switch insurers on their own, such as during open enrollment or after a major life change.

Still, people can be proactive in a few ways about maintaining care when they change plans, said Shelli Quenga, an insurance agent in South Carolina.

She advises patients to keep written records of their medical and drug history for new providers. Quenga tells her customers to get their new insurance information to their doctors as soon as they switch, not to wait until an appointment. In addition, she said patients can request a case manager with their insurer so they don’t have to repeat their concerns to different staffers.

Even when a patient does homework, doctors can drop out of a network and insurers can change the contours of their plans, McIntyre said.

“Nobody has an incentive to make it make sense,” she said. “This puts a lot of burden on the patient.”

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

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

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

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

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

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

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

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

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

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

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

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

Controlling Costs or Harming Patients?

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

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

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

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

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

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

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

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

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

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

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

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

Consumers Stuck in the Middle

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

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

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

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

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

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

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

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

States Step Up While Federal Oversight Stalls

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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