by Rose Lundy, The Maine Monitor

This article was produced for ProPublica’s Local Reporting Network in partnership with The Maine Monitor. Sign up for Dispatches to get stories like this one as soon as they are published.

One lunchtime in 2021, a longtime resident at Woodlands Memory Care of Rockland started throwing up. His fingernails turned purple, and his skin became red all over. He was lethargic and fidgety, and his breathing grew shallow, according to the facility’s daily care notes.

The resident was well known at this residential care facility in Maine’s Midcoast region. Former facility employees told The Maine Monitor and ProPublica that he was a nationally renowned concert pianist who continued to play a portable keyboard in his room even as his Alzheimer’s disease advanced.

It wasn’t until a family member arrived and asked if the resident had eaten peanuts that employees realized that he was having an allergic reaction to the peanut butter sandwich that he had been served for lunch, according to the facility care notes. Staff used an EpiPen to treat his anaphylactic shock and took him to the hospital. He died days later, though no official records were made available that show the cause of his death.

The employee who gave the sandwich to the resident wrote in the facility care notes the day after the incident that they “didn’t know” that the resident “was allergic to peanuts.”

In interviews with the Monitor and ProPublica, however, four former employees said the resident’s severe peanut allergy had been documented throughout the facility: in his resident profile, in his room and posted in the kitchen.

“It said it everywhere you looked around him that he was allergic to peanut butter,” said Stacy Peterson, who served as the human resources coordinator at Woodlands of Rockland from 2018 to 2020.

So it was a mystery to the former employees how the resident had been served a peanut butter sandwich that day for lunch.

After receiving an anonymous complaint, the Maine Department of Health and Human Services investigated the incident and cited Woodlands of Rockland for two resident rights violations — first by failing to protect the resident from a severe allergic reaction and the second time by not reporting the case to the state. (The citations do not identify the resident.)

Under state regulations, the health department had the power to impose a fine of up to $10,000 or issue a conditional license that would bar Woodlands of Rockland from accepting new residents for up to 12 months. But it did neither. Instead, it simply required the facility to submit a report, called a plan of correction, stating how it intended to address the deficiencies.

In that plan, Woodlands of Rockland acknowledged that the resident’s allergy had been documented but disputed the health department’s characterization that the facility violated the resident’s rights in the incident. Still, it promised to discipline the employee who served the sandwich and to retrain others on how to handle allergies and to report incidents.

The Maine Department of Health and Human Services found that Woodlands Memory Care of Rockland violated a resident’s right to be free “from abuse, neglect or exploitations” by serving him a peanut butter sandwich despite his documented peanut allergy. (Obtained by The Maine Monitor and ProPublica. Highlighted by ProPublica.)

The health department’s modest response to the peanut allergy incident exemplifies its approach to oversight, an investigation by the Monitor and ProPublica found. The health department rarely imposes fines or issues conditional licenses against the state’s roughly 190 largest residential care facilities, classified as Level IV, which provide less medical care than nursing homes but offer more homelike assisted living alternatives for older Mainers.

From 2020 to 2022, the health department issued “statements of deficiencies” against these facilities for 59 resident rights violations and about 650 additional violations — involving anything from medication and record-keeping errors to unsanitary conditions and missed mandatory trainings. Despite these violations, however, it imposed a fine only once: a $265 penalty against a facility for failing to comply with background check rules for hiring employees. And it issued four conditional licenses: three in response to administrative or technical violations and one in response to a variety of issues, including a violation of a resident’s privacy rights.

By contrast, Massachusetts, which has 269 assisted living facilities, doesn’t shy away from imposing stiff sanctions. From 2020 to 2022, the state suspended eight facilities’ operations for regulatory violations.

The paucity of sanctions in Maine comes at a time when Level IV facilities like Woodlands of Rockland — which are similar to what are known generally as assisted living facilities in other states — are expanding their presence in the state. The share of Maine’s population that is 65 or older, 21.7%, is the highest percentage in the country.

As the Monitor and ProPublica have reported, the state’s decision in the mid-1990s to tighten the requirement to qualify for nursing home placement helped spur thousands of older Mainers, many with significant medical needs, to move to these nonmedical facilities — which are subject only to state regulations that hold them to much lower minimum staffing, nursing and physician requirements than nursing homes, which face both state and federal scrutiny.

In stark contrast to how rarely Level IV facilities face sanctions, nursing homes in Maine are often hit with considerable fines for regulatory violations.

Health department spokesperson Jackie Farwell said that plans of correction are often sufficient for improving conditions at facilities. She added that as part of an effort to improve the long-term care system in Maine, the state has been considering rules changes to “establish fines and sanctions as more meaningful deterrents.” But she declined to elaborate on the specifics.

Dan Cashman, spokesperson for Woodlands Senior Living, which runs 14 Maine facilities including the one in Rockland, said the company has “a zero-tolerance policy” and has taken disciplinary actions against any employees who were found to have violated residents’ rights.

Cashman added that the company is in favor of stronger state action against individuals found to have violated residents’ rights to prevent them from working in residential care settings again.

But long-term care advocates say the health department is not doing enough to crack down on facilities, as opposed to individuals, and is allowing poor conditions to persist for vulnerable residents.

Richard Mollot, executive director of the Long Term Care Community Coalition, a national advocacy group focused on improving nursing homes and assisted living facilities, said stiff sanctions should be imposed more, so that there’s a “meaningful ladder of sufficient penalties to ensure that facilities are properly motivated to take steps to ensure resident safety.”

Otherwise, Mollot said, facilities have no incentive to change their behavior. “To pussyfoot around resident neglect or abuse,” he said, “is essentially encouraging. It’s allowing it to happen.”

A review by the Monitor and ProPublica of state inspection records from 2020 to 2022 shows that the health department employed the lowest intervention possible, even for some of the most serious abuse and neglect incidents.

In the summer of 2021, for instance, a resident at Crawford Commons in midcoast Maine was found to have sexually abused another resident multiple times, according to the state’s investigation. The health department cited the facility for two resident rights violations but only required it to submit a plan of correction.

A year later, a resident in Jed Prouty Residential Care Home in the Penobscot Bay region was found around 6:30 a.m., naked and asleep on the floor, “soaking wet with urine,” after falling sometime after 10 p.m. Witnesses said the resident had been crying for help and complaining of thirst until medics responded. No efforts had been made by staff to move the resident from the floor or provide clothing, according to the state’s investigation. Again, the health department cited the facility for a resident rights violation but only required it to submit a plan of correction.

Similarly, in 2021 and 2022, the health department also investigated Woodlands of Rockland for two other serious incidents. In one, a certified nursing assistant at the facility slapped a resident who had spit at and attempted to bite her, according to the state’s investigation. In the other, a resident wandered out to the facility’s locked courtyard, but employees didn’t notice that she was missing until they went to give her medications nearly two hours later, according to the state’s investigation. When the resident was found outside in the snow at around 8:40 p.m., employees wrapped her in blankets and called for emergency medical care. The resident died in hospice days later, and the state investigation cited the cause as “complications of hypothermia.” In the end, both incidents also led to plans of correction.

The Maine Department of Health and Human Services cited Woodlands Memory Care of Rockland for not protecting “a resident’s health and welfare” after the resident wandered out unsupervised into the facility’s locked courtyard. (Obtained by The Maine Monitor and ProPublica. Highlighted by ProPublica.)

Woodlands of Rockland has been disputing the health department’s characterization that the facility violated the resident’s rights in the courtyard incident. But Cashman declined to elaborate on the specifics.

Edward Sedacca, CEO of Magnolia Assisted Living, which runs Jed Prouty, said his company took over the operation of the facility in August 2022, a month before the incident, and has since made it a priority to enhance its staffing and training. “The staff we inherited was lacking in overall general knowledge,“ he said. “Magnolia has built an infrastructure well beyond that required under regulation to enable us to provide a higher level of care to all of our residents.”

Crawford Commons did not respond to requests for comment.

For Maine’s nursing homes, however, the response to similar incidents has been very different.

From 2020 to 2022, more than half of nursing homes in Maine received fines — 98 penalties in all, totaling nearly $700,000 — according to U.S. Centers for Medicare and Medicaid Services reports. These fines were imposed in response to a range of violations, including not following COVID-19 infection prevention protocol, making medication errors, not reporting unexpected deaths and failing to protect residents from harm.

In 2020, for instance, an employee at Pinnacle Health & Rehab, a nursing home in Canton in western Maine, “lost it” when a resident became combative, according to CMS investigation records. The employee punched the resident, who ended up with a black eye and bruising around the eyebrow. CMS fined the facility $41,650.

A year later, a resident at Heritage Rehab and Living Center, a nursing home in central Maine, wandered off the premises at night using a walker and was found later by police by the side of a road in the rain. No one at the facility had noticed that the resident was missing, according to CMS investigation records. CMS fined the facility $71,243.

Ken Huhn, administrator of Pinnacle, said the employee was fired, and he made it clear that “that type of behavior would not be tolerated” at his facility.

Heritage did not respond to requests for comment.

Even without the involvement of CMS, which does not regulate assisted living facilities around the country, the health department has the power to adopt a tougher approach toward Level IV facilities. Under state regulations, for instance, it can impose a fine when an incident poses “a substantial probability of serious mental or physical harm to a resident.”

Long-term care advocates told the Monitor and ProPublica that under this standard, some of the egregious abuse and neglect incidents in recent years at Level IV facilities should have resulted in stiff sanctions.

“Because the incidents are so egregious and show such disregard for the well-being of residents, they would have warranted some significant penalty and not just a pro forma requirement that the facility submit a plan of correction,” said Eric Carlson, director of long-term services and support advocacy at Justice in Aging, a national legal advocacy nonprofit focused on ending poverty among seniors.

Paula Banks, who has served as the executive director of another Woodlands facility in Cape Elizabeth and as an assistant administrator of a Maine nursing home, said the fear of such sanctions would be effective. If she were still helping run a residential care facility, she said, it would spur her to take immediate action to address any problems.

“What’s the impetus to change if there’s no consequence?” said Banks, who now runs a geriatric consulting and care management firm.

But Dr. Jabbar Fazeli, who has served as medical director at multiple residential care facilities and nursing homes in Maine, said that rather than imposing sanctions, the state should require more medical attention by increasing nursing hours and requiring a medical director to be on the premises.

“If they had more medical care, I would say 50% of these issues will self-resolve,” Fazeli said.

The health department metes out sanctions in only a small percent of the incidents it hears about each year. Most of the time, it hardly does anything.

To better understand the health department’s process for looking into potential issues, the Monitor and ProPublica analyzed a database of incidents reported to the state by Level IV facilities themselves. Unlike the state inspection records, the database of facility-reported incidents gives a window into what happens earlier in the health department’s enforcement process.

Level IV facilities are required to report an incident to the state when a regulatory violation may have occurred or when a resident’s safety was put at risk. We focused particularly on reports of incidents with the potential for direct harm: the cases of abuse and neglect.

From 2020 to 2022, the state received more than 550 reports of abuse and neglect incidents from Level IV facilities, according to the Monitor and ProPublica analysis. Of those, 342 cases involved residents abusing other residents, 102 cases involved “elopement,” in which residents wandered away unsupervised, and 61 cases involved a staff member abusing a resident.

The analysis shows that in nearly 85% of these incidents, state investigators took “no action” — which, according to Farwell, means that the health department decided not to investigate. She said this could have been for a range of reasons, such as when a facility has already taken corrective action, when state investigators do not expect to find a regulatory violation, or when an incident is being investigated as part of another case or is expected to be reviewed later.

The analysis also shows that the health department did not step up its enforcement even when individual facilities repeatedly reported similar issues.

From 2020 to 2022, 13 Level IV facilities, including Woodlands of Rockland, each had at least 10 abuse and neglect incidents, collectively reporting 348 cases to the state. Even after these facilities had reported multiple cases, the health department still took no action in 91% of them, the analysis shows.

Farwell said state investigators do pay attention to repeated incidents. “If patterns are observed, specific issues may be flagged for follow-up at the next scheduled survey,” she said.

But such follow-ups might not happen for many months, depending on the timing of the next inspection required for license renewal, which takes place only once every two years.

Dionne Mills, who served as the program coordinator at Woodlands of Rockland from 2019 to 2021 and also worked at two other Level IV facilities, said she became aware of the lack of state oversight during her time at the Rockland facility. She said she reported multiple incidents to the state until eventually a state investigator told her that they were too overwhelmed with complaints and that she would have more success taking her concerns to the media.

“The state is so super busy that they only have time to look into the absolute worst-case scenario,” Mills said.

Dionne Mills outside her home in Northport, Maine (Tara Rice for ProPublica)

Farwell disputed Mills’ account, noting that state investigators made seven visits to Woodlands of Rockland from 2020 to 2022, the time period when the facility was under investigation for the courtyard, peanut allergy and slapping incidents. Mills’ account “is inconsistent with the number of onsite visits that were conducted at this facility,” she said.

According to Farwell, the health department has 13 investigators — and is in the process of hiring two more — to inspect more than 1,100 assisted housing facilities in the state for license renewals and to investigate any incidents.

Mollot, of the Long Term Care Community Coalition, said the health department needs to do more against facilities with a history of repeated incidents, such as requiring independent monitoring and, possibly, revoking licenses.

“Faced with the fact that these facilities have reported over and over and over and over and over again incidents of abuse and neglect, why have there been a paucity of enforcement acts?” Mollot said.

Several former employees told the Monitor and ProPublica that the history of repeated incidents at Woodlands of Rockland illustrates what can happen to a facility’s standards when the health department takes little enforcement action.

Stacy Peterson, a former human resources coordinator at Woodlands Memory Care of Rockland, said facility managers made little effort to address recurring problems when she worked there. (Tara Rice for ProPublica)

From 2020 to 2022, Woodlands of Rockland had the highest number of abuse incidents reported by a Level IV facility — 48 cases in all, including 38 in which a resident abused another resident, according to the health department database.

But the health department investigated only five of the incidents that Woodlands of Rockland reported, took no action on the rest and imposed no sanctions other than requiring the facility to submit one plan of correction.

With little pressure from the health department, efforts to address recurring problems “were nonexistent when I worked there,” Mills, the former program coordinator, said.

Joshua Benner, who served as a residential care aide at Woodlands of Rockland from 2018 to 2020, said he found it concerning that when the facility was cited by the health department, none of the managers at the facility shared with employees what problems had been found.

“Every other health care place that I’ve ever worked, you have interventions, usually after the state comes in, to go over what you’re dinged on and what can be improved,” said Benner, who has worked at a nursing home and two other residential care facilities.

Cashman, the Woodlands spokesperson, denied that Woodlands of Rockland had “an ongoing or systemic problem” with abuse incidents, noting that the bulk of the cases involved a small number of residents “whose progressively worsening dementia-related behaviors became more and more challenging.”

In response to these residents’ behaviors, Cashman said Woodlands of Rockland has been proactive and taken “multiple interventions,” including resident care plan updates, medication modifications, referrals for hospital treatment and discharge planning.

Cashman said Woodlands of Rockland and its employees have been doing “their best to manage what can be extremely difficult behaviors by individuals living with significant cognitive impairments.”

But Banks said something is amiss if any facility has repeated incidents, noting that she would have been alarmed to see more than one or two incidents of abuse in three years, let alone 30 or more as Woodlands of Rockland did.

“When you have people in your building and you took them in and you told their families you would take care of them and you took their money,” Banks said, “I don’t care what’s going on. I don’t care if you have a staff of three. You’ve got to take care of your people.”

Mariam Elba contributed research.

This post was originally published on Articles and Investigations – ProPublica.

by Audrey Dutton

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up for Dispatches, a newsletter that spotlights wrongdoing around the country, to receive our stories in your inbox every week.

When the U.S. Supreme Court last year overturned Roe v. Wade, it greenlighted the kind of near-universal abortion restrictions that Idaho lawmakers had spent the previous two years crafting. Gov. Brad Little said the state should turn to helping women who might otherwise have terminated pregnancies.

“We absolutely must come together like never before to support women and teens facing unexpected or unwanted pregnancies,” said Little, a Republican who supports the abortion ban. About 1,700 to 2,000 people a year in Idaho had abortions before the court ruling. “Families, churches, charities, and local and state government must stand ready to lift them up and help them and their families with access to adoption services, health care, financial and food assistance, counseling and treatment, and family planning.”

But since the June 2022 decision, Idaho has failed to deliver — even as other conservative states with abortion bans took steps to enhance their safety nets for families during pregnancy and after birth.

Idaho legislators disbanded a state committee that investigated the root causes of maternal deaths, making it the only state in the nation with no such mortality review.

They allowed two bills to die that would have put Idaho on the same track as nearly every other state with abortion restrictions — including Florida, Kentucky and Texas — by extending postpartum Medicaid coverage to 12 months. Idaho’s Medicaid coverage ends two months after birth, the minimum under federal law.

They turned down $36 million in federal grants to support child care this summer, while other states with new abortion restrictions — Alabama, Louisiana and Missouri among them — made investments in early childhood education and day care. Idaho lawmakers at the time attributed the decision to a pending audit of a different batch of grants.

Democrats generally support these kinds of measures, but Idaho Republicans dominate the state capitol and therefore control which bills move forward.

Rep. Brent Crane, a longtime Republican leader who chairs the House State Affairs Committee, said GOP lawmakers last year had hoped to put forward bills to improve health care and support for kids and families after the Supreme Court struck down federal protections for abortion rights. They instead got bogged down in debate over exceptions to the abortion ban.

“Idaho has some work to do,” Crane said. “Be patient with us.”

The need is urgent, according to Emily Allen, policy associate for the nonprofit Idaho Voices for Children. The state, she said, needs health care funding and other support in place to adjust to life after the abortion ban.

“Things have changed,” Allen said. “We can either bury our head in the sand, or we can respond with good policy that is very family-centric.”

But Blaine Conzatti, president of the Idaho Family Policy Center and a leading anti-abortion lobbyist, is not bothered by the lack of government support. Pregnancies, births and child care are not the purview of the government, he said, but of families, communities, charities and, most of all, churches.

“The Bible is clear, and the history of Christendom broadly is clear, that it’s the church’s responsibility to meet the needs of the poor and to ensure that people have the services that they need to live flourishing lives,” Conzatti said.

No action set Idaho apart from other abortion-ban states more than when the Idaho Legislature allowed its Maternal Mortality Review Committee to die this year. The committee had been granted unique powers to review private health care and other records of women who died during or within a year after pregnancy and draw conclusions about the root causes of those deaths.

Its budget of $10,000 a year came only from federal funds, so keeping the committee going seemed pro forma. Every single state, New York and Texas alike, had put one in place. But in Idaho, a lobbyist for an ultraconservative political nonprofit stood up and spoke against it at a hearing.

Fred Birnbaum, legislative affairs director of Idaho Freedom Foundation, said studying the causes of Idaho’s roughly 10 to 15 preventable maternal deaths each year risked inviting a push for more government support to help keep people from dying. And government support was anathema to his group.

“You know the old saying, ‘All roads lead to Rome,’” said Birnbaum, who testified against the committee’s creation on similar grounds in 2019. “Well, all government-created committees lead to the call for more government spending.”

Birnbaum’s assessment was partly correct. Idaho’s maternal mortality committee had made recommendations that could increase public spending, such as extending Medicaid coverage postpartum, expanding access to naloxone to prevent death from opioid overdose and providing better housing and child care support. But of the 52 recommendations in the committee’s final report, most called for no new government spending.

The role of such committees has not been so controversial in other Republican-led states.

The Texas Maternal Mortality and Morbidity Review Committee, for example, has been around for about a decade and is now “part of the entire effort” to reduce tragic outcomes from pregnancy and birth, said Chris Van Deusen, director of media relations for the Texas Department of State Health Services.

The Texas committee’s findings in 2018 that patients had bled to death in childbirth helped push the state to adopt recommendations and protocols for hospitals to train their employees to measure blood loss and to educate people on what is abnormal bleeding. Birth-related hemorrhage deaths started to fall the following year, Van Deusen said.

He said the committee has generally had the support of Texas lawmakers, who voted last year to adopt one of its recommendations and extend postpartum Medicaid coverage to 12 months.

Advocates for the creation of Idaho’s committee in 2019 pointed out how other states had helped reduce maternal death rates: seat belt laws in Nevada; substance use disorder treatment in Michigan; urgent messages to doctors and hospitals in Florida.

Lucky Bourn, the longtime Republican coroner of Minidoka County and a member of the maternal mortality committee, said its demise means Idaho will have no window into maternal deaths in the wake of its abortion ban, because the committee’s final report used data from 2021.

“I was very disappointed in the Legislature when they did not continue the funding of it,” Bourn said. “The thought that comes to my mind is, ‘With the change in the abortion laws in the state of Idaho, do you think that might have a correlation in the rise of the mortality rate of the women who don’t want to be pregnant?’”

The number of maternal deaths since the abortion ban took effect has not yet been reported. The committee believed it would have had 10 maternal deaths to evaluate from 2022 if it had continued.

ProPublica identified at least two deaths during pregnancy and childbirth that the maternal mortality committee could have evaluated. One death was from complications during childbirth in 2022, according to the woman’s obituary. The other was a murder-suicide this year that claimed the life of the pregnant mother and her toddler, according to the sheriff in the rural North Idaho county where she lived.

Little’s staff told ProPublica that he will bring forward a proposal in 2024 “to continue the work of this important committee.”

Lawmakers are also poised to consider other proposals that have previously gone nowhere. Idaho House Majority Leader Megan Blanksma, a Republican from Elmore County, said she is working on bills that would improve prenatal and postpartum health care, resume the study of maternal deaths and “support young families.”

Blanksma also said she will revive legislation to extend Medicaid coverage for postpartum care to a full year, a concept she said she dropped last session because of the ballooning cost of Medicaid.

Idaho state Rep. Megan Blanksma asks Rep. Dori Healey about the rationale for continuing the state’s Maternal Mortality Review Committee, which studied the root causes of preventable deaths during and within a year of pregnancy. Both lawmakers are Republicans. (Video screen capture from Idaho In Session)

“We are working on a full package to introduce come January,” Blanksma told ProPublica.

Conzatti, the anti-abortion lobbyist, advocates a more hands-off approach from the state.

Idaho has at least 16 “pregnancy resource centers” spread across every region of the state. Many in Idaho are Christian-oriented organizations that offer counseling, referrals and some material support like diapers. According to the American College of Obstetricians and Gynecologists, the centers’ goal back when Roe v. Wade was in effect was to persuade women to carry their pregnancies to term rather than have abortions.

Few Idaho centers offer medical care beyond pregnancy tests and “heartbeat” ultrasounds.

But those centers are where Conzatti said people who have unplanned pregnancies should now look to for help. They embody his vision of a world before legalized abortion and before Medicaid got involved in the lives of poor families.

Crane, the Republican House leader, wouldn’t rule out state-funded support for pregnancy centers if there’s political will for it among lawmakers.

“Every option is on the table,” he said.

This post was originally published on Articles and Investigations – ProPublica.

by Aliyya Swaby

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up for Dispatches, a newsletter that spotlights wrongdoing around the country, to receive our stories in your inbox every week.

In the spring of 2022, Hann Henson accepted a job as a communications specialist for a North Carolina school district. Not long after his insurance kicked in, he pored over the hundred-page booklet outlining the state health plan for district employees.

When he came to the list of services that aren’t covered, he paused at a tiny footnote: North Carolina’s plan did currently pay for gender-affirming care — but only because of a temporary federal court order.

Henson’s heart rate rose as he considered his options. Since he was a child, he’d been burdened by a sense of deep distress about the mismatch between the gender he was assigned at birth and the gender he knew himself to be.

Henson had grown accustomed to state leaders and insurance plans playing political tug of war with his rights. In 2016, early in his transition, a Republican governor signed into law the country’s first statewide ban on transgender people using the bathroom aligned with their gender — forcing Henson to worry about violence from strangers when entering public restrooms. A Democratic governor largely scrapped it a year later. Henson spent the next several years jumping through every hoop his insurance company required before it would cover one of his transition-related surgeries, with a representative at one point telling him the company didn’t cover “tranny health care.”

Now, yet again, he faced obstacles to health care access because of his gender identity. As Henson found out after he started his new job, North Carolina had been fighting a legal battle since 2019 against transgender people on the state’s health plan, some of whom had sued the state for coverage of transition-related care. In 2022, a judge ordered the state to cover the care while the fight dragged on. But any moment, another court ruling could whisk it away.

Henson relaxes with his dog, JoJo, before leaving for work.

(Annie Flanagan, special to ProPublica)

As Henson had become more confident as a transgender man, the world around him seemed to grow increasingly hostile, with conservative rhetoric against transgender people accelerating an avalanche of restrictive laws. In the last year, state lawmakers across the country have considered nearly 500 proposals targeting transgender rights, and more than 80 became law — both unprecedented numbers. This legislative session, North Carolina passed laws banning gender-affirming care for youth, limiting instruction in elementary schools about gender and sexuality, and preventing transgender girls from playing on girls’ sports teams. A Republican supermajority in the legislature overrode the Democratic governor’s vetoes on all three.

In May, Dale Folwell, North Carolina’s state treasurer, sat for an interview with a far-right activist to explain his decision to keep fighting the lawsuit filed by transgender people over the state health plan. North Carolina is one of more than a dozen states with a health plan that explicitly denies coverage for gender-affirming care, and this lawsuit — one of several arguing that states cannot block access to the coverage — is the first to make it to a federal appeals court. Folwell, who is running for governor, argued that the state health plan’s board of trustees should have the authority to determine the scope of employee benefits — echoing the argument North Carolina makes in court documents that covering gender-affirming care would be a financial burden.

“When you have a plan this large,” Folwell said in the interview, “you have to focus on doing the most good for the most number of people. That’s how you set benefits.” He did not respond to ProPublica’s questions or interview requests.

Lawyers and experts for the transgender plaintiffs have pointed to evidence showing that covering the care would likely cost the state very little — and have argued that withholding it is discriminatory.

For several weeks this spring, Henson repeatedly checked the federal court website for an update on the lawsuit, gripped by a feeling of panic, “like somebody has got their hands around my neck.” One more major surgery separated him from the relief of his body fully matching his gender, and he wasn’t sure when the court would make a decision.

A few days after Folwell’s interview, Henson learned that the 4th U.S. Circuit Court of Appeals, based in Virginia, would hear arguments on the case in late September. It was far from the ideal time: His surgery was scheduled for late November, and he’d need a follow-up surgery about six months later.

The tight legal timeline has made the waiting period for the surgery almost unbearable for Henson: “You’re on the highway in the car and you’re driving and you’re like, ‘I’m gonna make it, I’m gonna make it.’ And then your gas starts running out.”

A 28-year-old self-described nerd with a youthful face and quiet voice, Henson distracts himself with his hobbies: playing video games with friends and attending anime conventions in costume. He regularly visits his parents in rural North Carolina and talks on the phone daily with his fiancee, who lives a few hours away. He has a calm demeanor, except for the nervous giggles that punctuate his speech, especially when he describes his darkest moments.

Henson and his fiancee, Aly Young

(Annie Flanagan, special to ProPublica)

As the last academic school year came to a close, Henson stayed late to take photos at a school board meeting, sporting a blue suit jacket and hefty camera as he herded together groups of students and teachers who had won awards. He headed down the hall to his office to upload the photos. The live video of the board meeting played on the computer in the background.

Several minutes into the public comment period, a man approached the podium, introducing himself as a clergy member and a parent. His voice grew louder as he questioned whether board members were “perverts” and “child molesters.” He listed children’s books featuring transgender or gender-nonconforming characters and insisted they would be used to groom children, “push down their throat puberty blockers or move them towards mutilation.” As he began to read a passage from the Bible, his mic turned off. His time had run out. The audience applauded him.

Henson watched the screen, horrified. He felt like the man was speaking specifically about him. Few of his co-workers attending the board meeting knew he was transgender. He had cautiously told only his boss and closest colleagues, nervous about gossip or uncomfortable questions. Alone in the room, the office door ajar, he began to cry.

In recent months, Henson had often considered where he would be if the attacks on transgender people had been as aggressive when he first came out a decade ago as they are now. “I probably would be dead,” he said.

During Henson’s senior year of college, North Carolina passed House Bill 2, a prototype for the state bathroom bills that conservatives across the country stamped into law this year. HB 2 prohibited transgender people from using the public bathroom aligning with their gender and stripped the ability from cities and counties to pass local nondiscrimination policies. On the floor of the state House in late March of 2016, Republican lawmakers emphasized that the bill would help people travel more freely across the state, knowing each business would have the same policy.

Henson had moved cautiously through his college experience. Years earlier, as a freshman, he came out as transgender to his new group of friends. It was the first time he had been so widely open about his gender identity, and he hoped they would understand. Instead, they told him he was just looking for attention.

Already burdened by feelings of shame and low self-worth, Henson tried to kill himself. His resident assistant rushed him to the emergency room, where he told a doctor that he’d been stressed about chemistry class and a recent medication change, and had fought with a friend about “some kind of gender identity issues,” according to his medical notes.

Henson never spoke with those friends again, but their comments looped in his mind after he returned to school and continued to move forward in his gender transition.

In his senior year, after several months on testosterone, his beard had begun to grow in, and though it was patchy, he wore it like armor to shield himself from strangers’ scrutiny. It didn’t always work.

He remembers walking into one of the men’s bathrooms on campus the first week after the law passed. A man standing at the urinal turned and asked, “Are you allowed to come in here anymore?”

Henson frequently experienced panic attacks, fearful of potential assault and furious at public policies that restricted his rights. He recalls standing in the middle stall at school and sending an angry email from his phone to then-Gov. Pat McCrory: I’m a transgender man in a public men’s room. Come and get me.

Henson is counting down the days until his final set of surgical procedures.

(Annie Flanagan, special to ProPublica)

In the months after the law passed, when he and his sister, Ashlee Park, ran errands at the suburban Walmart near her home, she stood outside the men’s bathroom protectively while he was inside. Park knew her brother was struggling. He had recently seen a therapist who waved away his gender dysphoria as a “pathological need to be different,” Park recalled. Since then, he had stopped mental health treatment and continued to spiral.

“He would say things that were just like: ‘I shouldn’t be alive. I’m an abomination,’” Park said. She would respond, “There’s nothing wrong with you. There’s something wrong with the world. You need to get out of your head.”

Henson couldn’t absorb her words. “It just felt like my state had said: ‘I don’t want you. You don’t deserve to be here,’” he said. “And when you’re told you don’t deserve to be here, you sort of feel like, ‘Where is there to go?’”

One day in the spring of 2016, Henson was visiting Park at her home. Park and her mother were about to leave the house, when Park suddenly felt uneasy. She went back inside to look for her brother and found him in her husband’s closet, looking at the collection of firearms in his gun case.

Henson immediately grew ashamed and pleaded with them not to tell anyone that he’d considered killing himself. “He was begging. I remember him standing on the landing in the studio and looking at me with these incredibly brown eyes,” his mother, Kim Crenshaw, recalled. “And telling me how hard it was for him to be in his body and to feel like such a freak.”

He asked his mother and sister not to take him to the emergency room. They agreed, under the condition that he find a good therapist, and they began calling him every week to ensure he was searching for one. Crenshaw thinks back on the effort it took to bring her son back up from his lowest point. “That scares me so badly for all the kids out there that are going through this now,” she said.

With his family’s encouragement and support, Henson began regular therapy after graduating from college and started to feel more comfortable in his identity. He decided to move forward in his medical transition, wanting chest reconstruction surgery so he could stop binding his chest flat every day. But the prospect of engaging with the health care system was daunting.

His medical records from past emergency room visits provide some insight into his experiences: Several times, doctors incorrectly referred to him as “female” (or, in especially erroneous language, as a “transgendered female”), at times using his previous name and alternating between pronouns.

In 2016, the Obama administration prohibited medical facilities and insurance companies from categorically refusing to cover all health services related to gender transition. But despite the new federal rule, his insurance company at the time, Blue Cross Blue Shield of North Carolina, threw up barrier after barrier.

Henson recalled that on one occasion, while on the phone with the claims department, the person on the call threw out a transphobic slur: “We don’t do tranny health care.” He hung up the phone and burst into tears.

At the time, Blue Cross Blue Shield of North Carolina required transgender patients seeking gender-affirming surgery to provide a supportive letter from a doctoral-level mental health professional — an incredibly high hurdle given the shortage of those providers across the country. After an exhaustive search, Henson found one in 2018 and later that year was able to get chest surgery. He remembers the surgery practice’s billing department filing an appeal with his insurance to get the procedure covered. Doctors there told him he was one of their first patients who received insurance approval for chest surgery related to a gender transition.

Blue Cross Blue Shield of North Carolina broadened its policy in 2020 to allow any licensed mental health professional to provide letters for transgender patients seeking gender-affirming care. In response to questions from ProPublica, spokesperson Jami Sanchez said the company provides training on gender identity to its customer service team to “ensure members are treated with dignity and respect.”

As the years passed, Henson found that more and more doctors understood how to treat transgender patients. After he took the job at the school district, he spoke with his general practitioner, Sydney Hendry, about getting a hysterectomy to treat the severe uterine spasms and cramps that can sometimes accompany testosterone therapy.

Henson visits with his doctor, Sydney Hendry.

(Annie Flanagan, special to ProPublica)

Hendry had to write a letter to the University of North Carolina Health surgical team verifying that Henson met the criteria for a gender dysphoria diagnosis and that a total hysterectomy would improve his quality of life. It was the first letter she had ever written for gender-affirming surgery. UNC Health provided a template that eased the process, avoiding the frustrating series of appeals and revisions that plagued Henson’s previous surgery.

Because of the federal court order, his state employee insurance agreed that it would cover the procedure. Henson had the surgery this March. But Hendry’s other transgender patients have told her that they’re scared about North Carolina limiting gender-affirming care for adults in the next year. “I tell them that they are my priority and that I will advocate for them,” she said.

“It feels like through my transition, there was this shift, where people became more educated about it and more knowledgeable,” Henson said. “And then in the past year or two, it’s starting to go back rapidly at a pace that is kind of scary.”

Henson feels that most people walking by him on the street see his full beard and stocky frame and don’t assume he is transgender. His fiancee, Aly Young, appreciates the sense of safety that comes with Henson “passing” but hates feeling like they’re hiding their true selves. “I don’t have thoughts in the back of my head like: ‘Should I be kissing him in public? Should I be holding his hand in public? Are people looking at us? Are we in danger?’” she said. “But at the same time, it makes me really sad. Because I don’t feel authentic. I don’t think Hann feels authentic.”

Henson and Young at a record store

(Annie Flanagan, special to ProPublica)

Henson and Young at Henson’s home. The two live several hours apart and visit each other when they can.

(Annie Flanagan, special to ProPublica)

The two met when Henson began attending her small charter school in 11th grade, after years of home-schooling. One day, Young was hanging out in the hallway, when a math teacher called her over and asked her to comfort the new student crying in the bathroom. Young slowly coaxed Henson out and started to pursue a friendship. When Young moved away the following year, she kept in touch, writing letters that Henson now keeps in a box under his bed.

The pair talk often about moving away from North Carolina, even leaving the South altogether.

The South goes back generations in both their family lines, but this home feels increasingly hostile. Henson’s parents live in Sanford, where the Proud Boys showed up to a local brewery to protest a drag brunch. On the drive to Sanford, he passes by a supersized Confederate flag, which the Sons of Confederate Veterans erected in 2020 to protest the removal of Confederate memorials.

Looking forward, Henson counts down the days until his final set of surgical procedures, a genital reconstruction process commonly called bottom surgery. He had used up all his paid sick leave recovering from the hysterectomy, so he scheduled this next surgery for November, letting him use winter break to recover. Even if he is able to get the surgery before a ruling in North Carolina’s favor, the procedure requires a revision surgery about six months later, and Henson worries about being stuck with it incomplete.

On the morning of Sept. 21, all the active judges on the 4th U.S. Circuit Court of Appeals will preside over a second-floor courtroom in Richmond, Virginia, and listen to arguments from lawyers on both sides.

They will hear North Carolina’s case on the same day that they hear a similar one out of West Virginia that will determine whether that state’s Medicaid program must cover gender-affirming surgery. In both cases, federal judges in lower courts have already found the states’ policies discriminatory.

Recently, more than 20 conservative states filed an amicus brief in support of North Carolina, calling gender-affirming care “at best experimental and at worst deeply harmful” — a characterization that contradicts the consensus of major medical associations. More than 15 Democratic-led states wrote a brief in favor of the transgender plaintiffs, citing their own regulations that prevent insurance companies from “discriminating against medically necessary, transition-related care.”

In late August, Henson learned that the pastor who had railed against the school board back in June would soon be meeting privately with district leaders. He realized the man would be coming into the administration building where he works, meaning he could run into him face-to-face.

He thought about the benefits and drawbacks of not being immediately recognized as transgender: feeling safer but also forced underground, in a way, having to hear the vitriol against his community but powerless to stand up to it. He thought about how tired he was of feeling helpless and invisible.

That morning, he got dressed deliberately. Dress pants. A short-sleeved button-down shirt. And on the collar, a heart-shaped symbol of defiance — a pin in the colors of the transgender flag.

Henson’s trangender pride pin

(Annie Flanagan, special to ProPublica)

by Max Blau

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up for Dispatches, a newsletter that spotlights wrongdoing around the country, to receive our stories in your inbox every week.

By the time 25-year-old Tyler Waite arrived at Methodist University Hospital in Memphis, Tennessee, in May 2020, his skin had turned a sickly shade of yellow. At 6-foot-3, pushing 330 pounds, his appearance was misshapen by a stomach distended with fluid. His liver had failed so much that, unless he got a new one, he likely wouldn’t live to see summer’s end.

A diehard Pittsburgh Steelers fan who loved fishing, Waite worked at a software company and lived at his parents’ home in the north Atlanta suburbs, saving for a place with his fiancee and working on getting his life back on track. Over the past few years, ever since his young daughter had moved away from Georgia with her mom, Waite had struggled. Many nights, he coped by drinking large amounts of vodka in the quiet of his family’s house.

Two weeks before he arrived in Memphis, a doctor at Piedmont Atlanta Hospital had discovered that Waite’s chronic drinking had gravely damaged his liver. Piedmont’s transplant center considered Waite’s case risky due to his obesity and the briefness of his sobriety. But there was a silver lining: The scarring from alcoholic cirrhosis was so advanced and the liver’s failure so swift that the transplant center’s staff determined he would land near the top of the waiting list for a donated organ.

But just before getting placed on the list, Waite abruptly left Piedmont against the advice of the staff. At home, his mother saw the fear in his eyes. Waite, who’d been cut off from his family because hospital visits were restricted at that point in the pandemic, had made what she thought was a shortsighted but forgivable decision. Marci Waite knew that her son couldn’t remain confined in the comfort of home if he wanted to survive. Once she talked him through that, and after he got to see his daughter once more before she flew back to Texas, he became less anxious. He returned to the hospital the next day.

Unfortunately, his departure added another red flag because it disrupted the dialysis treatment that his kidneys, which were also failing, had badly needed. Some of Piedmont’s staffers saw Waite’s departure as a sign that he wouldn’t take appropriate care of a donated liver, one of the transplant center’s leaders later told his mother. Ultimately, Piedmont refused to add him to the list. (A Piedmont spokesperson did not answer questions about Waite’s case.)

One of Piedmont’s doctors, unwilling to give up on Waite, sent his records to hospitals around the South. Emory University Hospital in Atlanta declined his case. UAB Hospital in Birmingham, Alabama, passed, too. So did UT Southwestern Medical Center in Dallas. Then someone from Methodist reached out. Its staff was willing to consider Waite.

Wow, his mother thought. We’re in luck.

Waite’s parents, Marci and John, at their home in Georgia (Lucy Garrett for ProPublica)

The James D. Eason Transplant Institute took pride in replacing the livers of higher-risk patients turned away by other hospitals, according to its former leader. But at the center of this philosophy is a series of difficult decisions: A transplant center willing to consider extremely ill patients like Waite must determine whether that candidate is healthy enough to survive after surgery — and, given America’s shortage of donated livers, whether someone with a better shot of living longer should get that organ instead.

As Methodist embraced that philosophy, it was also under scrutiny for its high rate of failed liver transplants. Between 2014 and 2018, the liver transplant program had twice been investigated by an oversight committee for the United Network for Organ Sharing, the federal contractor that runs the country’s transplant system, as revealed by ProPublica and MLK50: Justice Through Journalism in a recent story. (UNOS would not comment on the outcome of the investigations; a Methodist spokesperson previously told ProPublica and MLK50 that the liver program is no longer under investigation as of last year.)

Waite’s case illustrates both the promise and peril of Methodist’s approach. On the one hand, no one disagrees that without a transplant, Waite would have died imminently. On the other, six transplant experts told ProPublica and MLK50 that failure to heed the warnings of a patient’s psychosocial risks, such as addiction, can lead to greater suffering. “It’s dangerous, clearly, to overlook psychosocial issues,” said Jody Jones, a transplant psychologist for more than two decades.

A 2018 audit of Methodist’s liver transplant program by an external firm found that “a blatant lack of merit” was given to psychosocial issues by the hospital’s transplant selection committee. As a result, the audit found, the program “routinely transplanted patients with significant psychosocial risk,” including people who had a documented history of psychosis or alcohol recidivism. After the audit, a senior leader of the transplant center determined in an internal analysis that psychosocial risks contributed to the deaths of five liver recipients between 2014 and 2018. ProPublica and MLK50 obtained a copy of the analysis, which states that Methodist “should not have listed” those five patients for transplant. Those five deaths are among 25 that the analysis described as “preventable” in that time period.

Dr. James Eason, for whom the transplant center was named and who oversaw it starting in 2006, parted ways with Methodist last year. Both Eason and a spokesperson for the hospital did not respond to interview requests for this story. The spokesperson said in a statement that “our focus remains on providing the highest quality care to all our patients and this community and we will not deviate from this purpose.” Eason and Methodist also declined to answer written questions about Waite’s care, even though his mother waived her right to privacy so that Eason and the hospital could talk about Waite’s treatment.

Dr. James Eason at the transplant center renaming ceremony at Methodist University Hospital in 2019 (Via Methodist Le Bonheur Healthcare’s Facebook)

In a previous statement to ProPublica and MLK50, Eason said that his program had excelled at lowering the extent to which patients died on the waitlist. He also noted that, while Methodist experienced a small number of “unexpected deaths per year,” his program had “saved more than 100 lives each year” of patients with failing livers.

“I would never choose to let a single high-risk patient die instead of giving that individual a good chance of living,” Eason said in another previous statement.

Because the investigations, audit and internal analysis were not public, Marci Waite did not know about Methodist’s history of failed liver transplants when her son arrived there. Instead, when she read about Eason’s liver transplant program, she felt that her son had finally caught a break. After all, Eason was the surgeon who had replaced the liver of Apple co-founder Steve Jobs back in 2009. If the California billionaire had chosen this program, out of any program in America, she figured it was good enough for her son.

But not long after Waite’s transplant in June 2020, his mother’s hopes of a smooth recovery began to fade. A few weeks after the surgery, she learned from a Methodist staffer that a severe infection had spread throughout Waite’s body, overwhelming his organs. The following month, she was told that several of Waite’s ribs had been cracked when a staffer had to perform CPR after his heart stopped beating. The month after that, doctors had to sedate Waite after he experienced brain seizures — and they couldn’t tell her for days whether her son would fully regain his brain function. Ultimately, Waite would undergo 10 unforeseen surgeries in eight months to deal with his post-transplant complications.

Nevertheless, Methodist staffers voiced optimism about Waite’s future. And that, in turn, made his mother feel optimistic. That September, she wrote on Tyler’s GoFundMe page that things “seem to be going in the right direction again, so let’s pray it keeps going that way.”

Tyler Waite and his daughter (Courtesy of Marci Waite)

On any given day in America, more than 10,000 people are waiting for a new liver, and a shortage of them means that some of those people die before an organ becomes available. Hospitals like Methodist are facing an ethical dilemma regarding the sickest of them.

For patients at extreme risk of death because their drinking has compromised their liver, the likelihood of getting a transplant has, over the past two decades, gone from exceedingly rare to entirely possible. Transplant centers that had once required patients to be sober for six months have loosened their policies to allow more of these patients to be eligible for a new liver. But the increased demand for a limited supply of organs means that patients with other kinds of liver failure potentially wait longer for lifesaving care.

“Let’s make no bones about it: This is an extremely controversial topic within each medical center,” said Dr. Shimul Shah, chief of solid organ transplantation with UC Health in Cincinnati.

The experts who conducted the 2018 audit of Eason’s liver transplant program urged Methodist to create a stricter policy that would deem patients with serious psychosocial issues ineligible for transplant. They also recommended that Eason’s team hire an addiction medicine specialist, who could help perform nuanced evaluations of patients and direct them to treatment for their chronic drinking.

Following the audit, Eason and his colleagues provided documents to the UNOS investigative committee that said Methodist would hire a chemical dependency expert and partner with a “specialized” alcohol addiction unit. Eason did not respond to questions about the experts’ findings. Methodist spokesperson Tabrina Davis said in a previous statement that the transplant center had quickly accepted some of the audit’s recommendations and, nearly five years later, is still considering others.

Transplant centers have increasingly devoted more resources to patients facing addiction. According to a recent survey of 100 U.S. liver transplant programs, over 75% of them have a psychologist and addiction medicine specialist, and more than half have their own treatment programs. Transplant experts said these services are intended to help people who recently stopped drinking get healthier before undergoing a transplant. Dr. Michael Lucey, professor of gastroenterology and hepatology at the University of Wisconsin’s medical school, said those resources are an “integral part” of performing more comprehensive psychosocial evaluations.

But when Waite’s ambulance pulled up to Methodist, the week after Memorial Day, the transplant center had yet to fully implement the changes it had pledged to the UNOS oversight committee more than a year earlier, according to employees who worked at the hospital at the time.

The week after Waite was admitted, members of Methodist’s transplant selection committee met to determine whether he was healthy enough to undergo surgery. They were supposed to decline any patient if they could find one issue that could severely threaten the patient’s survival, such as having high pulmonary arterial pressure or having uncontrolled sepsis, according to the committee’s policy. They also were supposed to reject a patient if that person had three health issues that together posed a serious threat.

Davis, the Methodist spokesperson, said in a previous statement that the transplant center has a “rigorous selection criteria” to decide which referred patients should be made eligible for a transplant. She added that the hospital “declines a significant number of individuals who are sick enough to be transplanted but do not meet the criteria to indicate they would have successful outcomes post-transplant.”

Waite’s medical records show that the committee marked the briefness of his sobriety as one red flag. During his evaluation days earlier, Waite told a Methodist staffer that he had never sought treatment for his alcohol use or attended an Alcoholics Anonymous meeting. His doctors wrote that Waite’s brief period of sobriety “seems entirely due to time spent hospitalized.” While doctors labeled Waite a “high-risk candidate for transplant,” one noted that “given his young age I would like to give him a chance.”

His body mass index was also high enough on his patient evaluation to be counted as a second red flag. Despite that, however, the committee members determined that it wasn’t a concern, records show.

Beyond that, there was a potential third red flag: Waite’s risk of not following instructions from his medical providers. Following such instructions is important because, as Michigan Medicine transplant psychiatrist Dr. G. Scott Winder explains, “so much of a transplant consultation is predicated on trusting the patient.”

“If you really want to spook a transplant team, check yourself out of the hospital against medical advice,” Winder said.

During Waite’s evaluation at Methodist, his social worker had written that his departure from Piedmont was an “isolated event” that should not influence his candidacy for transplant. But shortly after Waite was admitted to Methodist, he had discontinued a round of dialysis against the advice of medical staff. (Marci Waite said that her son was scared of dialysis because he had a painful experience with the treatment at Piedmont.) Even with the additional example of Waite not following the staff’s instructions, the selection committee found that he wasn’t likely to disobey instructions again.

After the meeting ended, Methodist shared the news that Waite and his family had been waiting for. The committee had cleared him for a transplant.

John Waite at home (Lucy Garrett for ProPublica)

The reason that Methodist had considered Waite at all was due to a seismic shift disrupting the field of liver transplantation. For several decades, starting in the 1980s, the industry standard was that patients should be six months sober to be approved for a transplant. When Mickey Mantle’s liver failed in 1995, he was approved for a transplant in Texas only after he had achieved more than six months of sobriety and signed a contract vowing to not to drink once a new liver was placed inside of him.

Over time, as addiction became viewed as more of a chronic disease than a moral failing, transplant experts began to see the six-month rule as a practice that unfairly denied lifesaving treatment to people who struggled with drinking alcohol. Since patients with extreme liver failure often don’t have six months to live, experts wrote in the journal Alcohol and Alcoholism that the rule could be ​​“tantamount to a death sentence.”

In the late 2000s, as evidence emerged that six months of sobriety was a bad indicator of whether a liver recipient would relapse, European researchers sought to disprove the rule. Medical providers in France and Belgium “carefully selected” patients with acute alcoholic hepatitis and a brief period of sobriety for an “early” liver transplant. The researchers found those patients not only were more likely to survive longer than people who didn’t receive a new liver, but they also were unlikely to relapse after transplant. In 2011, they wrote in The New England Journal of Medicine that the findings challenged “the notion of a prescribed abstinence period as the only alcoholism-related criterion for transplant eligibility.”

Dr. Brian P. Lee, a transplant hepatologist with Keck Medicine of USC, said the study “really paved the way for huge change in U.S. practice.” In the years after the study, the overwhelming majority of transplant centers dropped the six-month rule, leading to a surge in the number of people with alcohol-associated liver failure who were approved for the surgery. Methodist was among the transplant programs that allowed for a shorter period of abstinence, approving patients with brief sobriety for transplant if they had a “low risk for recidivism,” according to a paper in the journal Experimental and Clinical Transplantation written by Eason and his colleagues.

Following this change, the proportion of liver transplant surgeries performed on people at extreme risk of death due to alcohol-associated liver disease nearly tripled in a decade, from 3.3% in 2011 to 9.3% in 2020. Over that same period, Methodist’s proportion of transplants for these kinds of patients increased even more, from 2.2% to 11.8%.

While some transplant experts were encouraged by this trend, others worried that the fault lines were shifting too fast. Programs that embraced liver transplants for gravely ill patients with a brief period of sobriety often ended up with those patients at the top of their waitlists. Because they were sicker than patients at the top of other programs’ waitlists, they were positioned to receive a liver faster than patients at those other programs.

Last year Dr. James Trotter, a hepatologist at Baylor University Medical Center, wrote in the journal Transplantation that the trend had spurred “local competition for patients” with alcohol-associated liver disease. That, in turn, pushed more liver transplant programs to loosen their policies on accepting such patients to avoid losing patient referrals, case volumes and revenues. A spokesperson for Eason previously said in a statement that he did not receive additional compensation for performing more transplants, “nor was any aspect of his compensation based on such a metric.” Methodist did not respond to questions about the program’s finances.

Some transplant experts have pointed out that UNOS has yet to pass national standards to ensure that every liver transplant program adheres to the same practices for considering patients with an alcohol-associated liver disease. In a recent American Journal of Transplantation article, Lee and a colleague called for UNOS to create national standards to reduce “disparities in transplant access and patient outcomes” among different transplant programs. UNOS spokesperson Anne Paschke said in a statement that no standards exist because each “transplant team is responsible” for approving these kinds of patients for transplant.

“It’s a bit of the Wild West, from program to program, because of the different standards,” said Shah of UC Health in Cincinnati. “It’s happened many times that we will turn someone down for a transplant, but we’ll refer them to a program that has more lenient standards — and they will transplant.”

From the moments after Eason replaced Waite’s liver in June of 2020, his mother tracked the ups and downs of his recovery. By the end of the month, Waite was discharged to a rehab facility and had been told to look ahead to a potential kidney transplant if his progress continued. Marci Waite couldn’t visit for weeks due to Methodist’s COVID-19 restrictions, so she offered a pep talk from afar. “You are NO LONGER in a damn hospital 🙏,” she texted him. “That is very exciting…we are all cheering.”

But around the Fourth of July, Waite landed back in the intensive care unit. He had complained to his mother about having severe stomach pains; not only was he vomiting bile, but fluids were building up in his abdomen. Eason’s team performed four surgeries that July to better understand the cause of those problems but struggled to find a clear answer.

“I’m miserable 😖,” Waite texted his mother after the surgeries.

“I wish we could just hit a fast forward button,” she wrote.

“I’m ready to tap out 😢,” he replied.

“Ty…no, you can’t,” she wrote back.

It’s difficult to know the extent to which any of Waite’s risk factors, including his history of drinking alcohol, contributed to his complications. But as the weeks passed, his condition deteriorated so much that one day that fall, Marci Waite and her husband, John, were quietly pulled aside by one of their son’s doctors. Given the optimism that had been conveyed by Methodist staffers so far, the Waites were caught off guard by what this doctor had to say: The transplanted liver that was supposed to be saving their son’s life had already started to fail.

At around that time, Waite’s fiancée, Sarah Benson, was finally allowed to visit Methodist. She was shocked by his condition. His hair was falling out. He had lost some of his teeth. He winced in pain whenever she touched him. “I started to cope with the inevitability that, no matter what happened, my Tyler was gone,” she said. Waite’s parents were also beginning to lose hope. By the end of 2020, Waite had undergone eight surgeries to address varying complications. After a brief upswing around Christmas — during which he was healthy enough to have his feeding tube removed and chomp down on pizza and McGriddles — he developed a severe infection. Eason’s team performed two more surgeries in February 2021, including one to remove a portion of his stomach that had started to decay.

After all those surgeries, neither his liver nor his kidneys were getting better. Unlike before, Waite was too sick to immediately get placed on the waiting list. He needed to get better before he had a shot at another liver.

One day in early March, when Eason stopped by to check on Waite, his mother asked him to be upfront about her son’s prognosis. “If he’s not going to make it, I need to know,” she remembers telling Eason. She said he later confirmed her suspicions. Her son wasn’t going to live much longer. She looked at him, knowing the tough call ahead.

That afternoon, the staff ceased further rounds of dialysis and doses of his blood pressure medication. They unhooked his ventilator. His mother recalled him taking a few last peaceful breaths. He died before dusk.

During the dark months ahead, the Waites sought to preserve their son’s memory the best they could. In their living room, they placed photos of him around an urn full of his ashes. In the front yard, John Waite dug a large hole for a memorial pond. On her right arm, Marci Waite got a tattoo of a hummingbird alongside three words that her son used to sign his holiday cards with: “love you lots.”

Marci Waite memorialized her son with a tattoo on her arm. (Lucy Garrett for ProPublica)

As she mourned, she thought about how her son had suffered in the nine months following his transplant. And for what, exactly? She had desperately wanted more time with him. But not like this.

In the end, she was left wondering whether the other four hospitals had, in fact, made the right call.

“That’s what it boils down to,” she recently said. “Methodist shouldn’t have given Tyler a transplant.”

Tell Us About Your Experience With the Organ Transplant System

Wendi C. Thomas, MLK50: Justice Through Journalism, contributed reporting.

This post was originally published on Articles and Investigations – ProPublica.

by Cezary Podkul

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up to receive our biggest stories as soon as they’re published.

Imagine if each time your wages were deposited in your bank account, your employer deducted a fee of 1.5% to 5% to provide the money electronically. That, increasingly, is what health insurers are imposing on doctors. Many insurers, after whittling down physicians’ reimbursements, now take an additional cut if the doctor prefers — as almost all do — to receive funds electronically rather than via a paper check.

Such fees have become routine in American health care in recent years, according to an investigation by ProPublica published on Monday, and some medical clinics say they’ll seek to pass those costs on to patients. Almost 60% of medical practices said they were compelled to pay fees for electronic payment at least some of the time, according to a 2021 survey. With more than $2 trillion a year of medical claims paid electronically, these fees likely add up to billions of dollars that could be spent on care but instead are going to insurers and middlemen.

Congress had intended the opposite to happen. When lawmakers passed the Affordable Care Act in 2010, they encouraged the use of electronic payments in health care. Direct deposits are faster and easier to process than checks, requiring less labor for doctors and insurers alike. “The idea was to lower costs,” said Robert Tennant of the Workgroup for Electronic Data Interchange, an industry group that advises the federal government.

When the Centers for Medicare & Medicaid Services created rules for electronic payments in 2012, the agency predicted that shifting from paper to electronic billing would save $3 billion to $4.5 billion over 10 years.

That’s not how it played out. CMS quickly began hearing complaints from doctors about fees. An industry of middlemen had begun sprouting up, processing payments for insurers and skimming fees off the top. Sometimes they shared a portion of the fees with insurers, too. The middlemen companies say they offer value in return for their fees and insist that it’s easy to opt out of their services, but doctors say otherwise.

CMS responded to the complaints in August 2017 by publishing a notice on its website reminding the health care industry that electronic payments were not a profit-making opportunity. The agency cited a long-standing rule that prohibited charging fees. (Technically, the government banned “fees or costs in excess of the fees or costs for normal telecommunications,” such as the cost of sending an email.) The rule had been on the books since 2000, but the insurers and their middlemen weren’t abiding by it.

Within six months of that pronouncement, however, CMS suddenly removed the fee notice from its website. The decision baffled doctors such as Alex Shteynshlyuger, a New York urologist who has made it his mission to battle the fees. Shteynshlyuger began filing voluminous public records requests with CMS to obtain documents showing why the agency reversed course. The records that he eventually obtained, which he shared with ProPublica, provided a rare nearly day-by-day glimpse of how one industry lobbyist got CMS to back down.

The lobbyist, Matthew Albright, used to work at the CMS division that implemented the electronic payment rule. In fact, he was its chief author. He had since moved on to Zelis, a company that handles electronic payments for over 700 insurers and other “payers.” Internal CMS emails show that Albright protested the notice prohibiting fees and demanded that CMS revise the document. Over the ensuing months, as ProPublica outlined, Albright used an artful combination of cajoling, argument and legal threat. He claimed the rule against fees applied only to direct transactions between insurers and doctors, but electronic payments involved middlemen such as Zelis, so the prohibition didn’t apply. CMS ultimately dropped its ban on fees.

The move benefited Zelis and other payment processors. The losers were doctors, who say they’re often not given an option to get paid electronically without agreeing to a fee. In March, for example, when Shteynshlyuger called Zelis to enroll in electronic payments from one insurer, a Zelis rep quoted him a fee of 2.5% for each payment. When he complained, the call got transferred to another rep who said, “The lowest we can go is 2.1%.”

Zelis said in a statement that it “removes many of the obstacles that keep providers from efficiently initiating, receiving, and benefitting from electronic payments. We believe in provider choice and actively support their ability to move between payment methods based upon differing needs and preferences.” Zelis did not respond to detailed questions about Albright’s interactions with CMS or make him available to discuss that topic. CMS said that it “receives feedback from a wide range of stakeholders on an ongoing basis” to understand “where guidance and clarification of existing policy may be needed.”

As for Shteynshlyuger, he’s still on a quest to help doctors avoid electronic payment fees. Meanwhile, his inability to persuade the insurance middlemen often leads him to a step that is the antithesis of efficiency: Whenever he’s asked to pay a fee for an electronic payment, he requests a paper check instead.

Read the full story of the rise of electronic payment fees in ProPublica’s investigation.

Do You Have Insights Into Health Insurance Denials? Help Us Report on the System.

This post was originally published on Articles and Investigations – ProPublica.