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.

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.

It was a multibillion-dollar strike, so stealthy and precise that the only visible sign was a notice that suddenly vanished from a government website.

In August 2017, a federal agency with sweeping powers over the health care industry posted a notice informing insurance companies that they weren’t allowed to charge physicians a fee when the companies paid the doctors for their work. Six months later, that statement disappeared without explanation.

The vanishing notice was the result of a behind-the-scenes campaign by the insurance industry and its middlemen that has largely escaped public notice — but that has had massive financial consequences that have rippled through the health care universe. The insurers’ invisible victory has tightened the financial vise on doctors and hospitals, nurtured a thriving industry of middlemen and allowed health insurers to do something no other industry does: Take one last cut even as it pays its bills.

Insurers now routinely require doctors to kick back as much as 5% if they want to be paid electronically. Even when physicians ask to be paid by check, doctors say, insurers often resume the electronic payments — and the fees — against their wishes. Despite protests from doctors and hospitals, the insurers and their middlemen refuse to back down.

There are plenty of reasons doctors are furious with the insurance industry. Insurers have slashed their reimbursement rates, cost them patients by excluding them from their provider networks, and forced them to spend extra time seeking pre-authorizations for ever more procedures and battling denials of coverage.

Paying fees to get paid is the final blow for some. “All these additional fees are the reason why you see small practices folding up on a regular basis, or at least contributing to it,” said Dr. Terence Gray, an anesthesiologist in Scarborough, Maine. Some medical clinics told ProPublica they are seeking ways to raise their rates in response to the fees, which would pass the costs on to patients.

“It’s ridiculous,” said Karen Jackson, who until her retirement in March was a veteran senior official at the Centers for Medicare & Medicaid Services, the federal agency that posted, then unposted, the fee notice. Doctors, she said, shouldn’t have to pay fees to get paid.

But that’s precisely what’s happening. 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. And the frequency has increased since then, according to medical clinics. With more than $2 trillion in medical claims being paid electronically each year, these fees likely add up to billions of dollars annually.

Huge sums that could be spent on care are instead being siphoned off to insurers and middlemen. The fees can cost larger medical practices $1 million a year, according to an April poll by the Medical Group Management Association, which represents private medical practices. The figure sometimes runs even higher, according to a 2020 complaint to CMS from a senior executive of AdventHealth, which has 53 hospitals in nine states: “I have to pay $1.8M in expenses that I could use on PPE for our employees, or setting up testing sites, or providing charity care, or covering other community benefits.” Most clinics are smaller, and they estimated annual losses of $100,000 or less. Even that figure is more than enough to cover the salary of a registered nurse.

The shift from paper to electronic processing, which began in the early 2000s and accelerated after the Affordable Care Act went into effect, was intended to increase efficiency and save money. The story of how a cost-saving initiative ended up benefiting private insurers reveals a lot about what ails the U.S. medical system and why Americans pay more for health care than people in other developed countries. In this case, it took less than a decade for a new industry of middlemen, owned by private equity funds and giant conglomerates like UnitedHealth Group, to cash in.

How these players managed to create this lucrative niche has never previously been reported. And the story is coming to light in part because one doctor, initially incensed by the fees, and then baffled by CMS’ unexplained zigzags, decided to try to figure out what was going on. Dr. Alex Shteynshlyuger, a urologist who runs his own clinic in New York City, made it his mission to take on both the insurers and the federal bureaucracy. He began filing voluminous public records requests with CMS.

Dr. Alex Shteynshlyuger is on a crusade against payment processors’ fees, which he says threaten his practice. (DeSean McClinton-Holland for ProPublica)

What he discovered in internal emails and government documents, which he shared with ProPublica, was a picture sharply at odds with the image of CMS as a hugely powerful force in health care. The records showed, again and again, federal officials deferring not only to a single company, but to a single executive.

Over the past five years, CMS adopted that company’s positions on fees. Shteynshlyuger discovered that, when it comes to the issue he cares about, the most powerful decision-maker wasn’t a CMS official. It was the chief lobbyist for a middleman company called Zelis. And that man just happened to be a former CMS staffer who had authored a key federal rule on electronic payments.

For Shteynshlyuger, the intersection of medicine and money has a particular resonance. He was born in the Soviet Union, in what is now Ukraine, and his brother nearly died of pneumonia as an infant because doctors refused to administer an antibiotic. The doctors wanted his family to pay a “bribe,” according to Shteynshlyuger. His grandmother ended up finding a different doctor to pay off and his brother got the medicine. Shtenynshlyuger’s parents emigrated to the U.S. in 1991, when he was an adolescent, and they settled in Brooklyn’s Brighton Beach area.

Today, Shteynshlyuger sees the fees for electronic payment through a similar lens. He’s a gadfly, but one with a wry, sometimes humorous disposition and an intellectual bent. He studied biology and economics in college and is capable of both rage at perceived unfairness and dispassionate observations about health policy. The unjust fees, as he sees them, threaten his medical practice, which he designed to serve middle-class patients. He prices his services at a discount. “Low cost is what keeps me in the business,” he said.

As a result, administrative combat has become a big part of his life. Unmarried, Shteynshlyuger, 45, stays up into the wee hours, writing lengthy memos to regulators. One recent missive spanned 155 pages, including appendices.

This New Year’s, he joined his family for a week off at his parents’ condo near Miami. Shteynshlyuger arrived with a desktop computer, which he set up in one of the bedrooms alongside two monitors that he keeps at the condo. While his nieces and brother enjoyed the beach, Shteynshlyuger sat indoors, drafting a 38-page memo to aid in one of two lawsuits he has filed in an effort to pry documents out of CMS.

Shteynshlyuger’s accent, with its distinctive Brooklyn-Russian mix, is unmistakable in calls with customer service representatives at insurance companies and payment processors. (He recorded many of the calls and shared them with ProPublica.) The calls follow a similar pattern: Posing questions in the manner of a genial but persistent litigator, Shteynshlyuger asks why he’s being charged a fee.

Ultimately, he’s informed that there’s no way to have an electronic funds transfer, or EFT, sent straight to his bank account without paying a fee. When the calls get escalated, representatives sometimes offer to shave a tiny amount off the fees — charging, say, 2.1% rather than 2.5%, a proposal made on one recent call with Zelis — but rarely is he offered a free transfer.

Shteynshlyuger spends hours on the phone with payment processors like Zelis, fighting their attempts to impose fees on electronic payments. (DeSean McClinton-Holland for ProPublica)

A spokesperson for Zelis, the payment-processing company that Shteynshlyuger has tangled with most often, said the company refers requests for free electronic payments to the insurers, but recordings and transcripts of recent calls show that did not happen when Shteynshlyuger called.

Shteynshlyuger and other doctors say payment processors routinely sign them up for high-fee payment methods without their consent. A brochure for one payment company, Change Healthcare, boasted of automatically enrolling 100,000 doctors and hospitals in a plan to receive virtual credit cards and sharing some $8 million a year in revenues with the large insurer it was working for. (Virtual credit cards are a form of electronic payment in which a payer sends a string of numbers that are typed into a credit card reader to generate a one-time payment. Fees for VCCs run as high as 5% versus a typical 2.5% for other kinds of electronic payments.)

Payment processors often boost insurers’ revenues by sharing the fees from virtual credit cards. One processor, VPay, says in its marketing materials that insurers can “make money on every virtual card transaction.” In response to questions from ProPublica, UnitedHealth, which owns Change and VPay, asserted that its services help medical clinics streamline recordkeeping, reduce administrative burdens and accelerate payments.

Zelis and other payment processors say they offer value in return for their fees: Doctors can sign up to receive reimbursements from hundreds of insurers through a single payment processor, and they can also get services that help match up electronic payments and receipts. Zelis asserted in a statement that its services remove “many of the obstacles that keep providers from efficiently initiating, receiving, and benefitting from electronic payments.” Zelis and other companies insist that it’s easy to opt out of their services, but Shteynshlyuger and other doctors say otherwise.

Virtual credit cards come with fees as high as 5%. (Courtesy of Dr. Terence Gray. Redacted by ProPublica)

When Shtyenshlyuger embarked on his mission of fighting the fees in 2017, his first step was research. He quickly came across an article from the American Medical Association that said the law was on his side.

Shteynshlyuger then approached the companies. He emailed senior executives of Zelis and VPay, asserting that the fees violated CMS rules. The companies denied breaking any rules and wouldn’t budge on the fees.

So Shteynshlyuger started filing complaints with CMS. The responses he received struck him as curious. CMS itself usually didn’t offer an opinion. Instead, it forwarded letters from a Zelis executive named Matthew Albright, who answered Shteynshlyuger’s complaints on at least five occasions. (The agency said this passive approach is part of its “informal” complaint resolution process.)

When Shteynshlyuger pressed a CMS official to articulate the agency’s position after it passed along Albright’s answer, the official wrote that the agency receives the “identical legal response” from Zelis to all such complaints. She added: “They believe that, according to their interpretation of the regulation, they are compliant.”

Shteynshlyuger was flummoxed. Who was Matthew Albright? A quick Google search revealed that Albright had once worked for CMS. That only piqued Shteynshlyuger’s interest. Had Albright been involved in the removal of the CMS notice prohibiting fees?

To Albright, the 2010 passage of the Affordable Care Act was a historic event of a magnitude akin to the moon landing. Then a policymaker with Washington state’s Health Care Authority, Albright was awed by the importance of the looming rewrite of U.S. health care rules. He felt he had to be part of it. “This is the Apollo 11 for regulators,” he recalled thinking, in an interview with ProPublica. “I’ve got to get to D.C. and write regulations.”

Matthew Albright, now chief legislative affairs officer at Zelis, made a series of explanatory videos in his days at the Centers for Medicare & Medicaid Services. (Screenshot via YouTube)

Now 55, Albright had unusual training for his new role. Instead of following the typical path through law school, he had studied sacred texts, first at the Pontifical University of St. Thomas Aquinas in Rome and later at Harvard University, where he earned a master’s degree in divinity. Those studies, Albright said, fostered what he called a “scholastic fascination with words and how they’re used to tell people what to do,” whether those words are in the Ten Commandments or the Code of Federal Regulations.

Articulate and cheerful, today Albright can still sound more like a divinity professor than a lobbyist when he describes his current job as studying laws and rules. “Hermeneutics,” he said, “it’s just like Bible study, right? Breaking it down into its understandable parts. And then, frankly, turning around and teaching it or turning around and explaining it in the vernacular, if you will. So I think that most of my job is looking at regulations and reading them and then explaining them to internal and external audiences.”

At CMS, Albright drafted a rule, published in 2012, that laid out standards for paying doctors via electronic funds transfers. The Affordable Care Act required all insurers to offer EFTs and encouraged doctors to accept them, and electronic payments quickly became the go-to method for handling medical claims. A CMS analysis predicted that eliminating the labor of manually processing paper checks and receipts would lead to savings of $3 billion to $4.5 billion over 10 years.

Albright became the agency’s point man on the issue. He looked every bit the government bureaucrat in a gray shirt and dark suit as he extolled the virtues of “administrative simplification” in earnest-but-stiff video segments that emulated a talk show. (Albright also created a personal YouTube channel when he taught a philosophy course. It had bite-sized explanations of, among other things, Kantian ethics — “do not use people” — and Ayn Rand’s philosophy — “selfishness is good.”)

Albright’s work at CMS, by his description, became a “turning point” for health care payments. The shift to electronic funds transfers facilitated the growth of an industry of payment processors. It also made Albright’s skill set very valuable. In 2014, he was recruited to the industry he previously regulated. Two years later, he landed at Zelis. The company had just been created via a merger of four businesses owned by Parthenon Capital, a private equity firm. Zelis is now co-owned by private equity giant Bain Capital and headed by a former Bain partner. (Parthenon declined to comment; Bain referred a request for comment to Zelis.)

Zelis, which once described itself as having a “regulatory-based business model,” touted Albright’s government resume when it hired him as vice president of legislative affairs. Albright said at the time he would “advocate for rational regulatory approaches.”

Rational regulatory approaches, from Zelis’ perspective, included the right to charge doctors for electronic payments. That was a crucial revenue stream for the company, but it could dry up if CMS enforced a rule prohibiting such fees. Who better than Albright, the man who had drafted rules on electronic payments, to help the company navigate the situation?

When Shteynshlyuger began to receive documents from CMS in response to his Freedom of Information Act requests, he was first struck by how deferential CMS officials seemed to be to Albright. In July 2019, for example, as Shteynshlyuger continued to complain about Zelis, a CMS official named Gladys Wheeler contacted Albright. “You may be familiar with Dr. Alex Shteynshlyuger,” Wheeler wrote. “To assist with resolution of the complaints, I have a few questions. Can I send the questions to you, or can you redirect me?” She added, “Just let me know the best approach. Thanks, and take care, Gladys.” (Wheeler did not respond to requests for comment.)

The tone of the conversations between Albright and CMS could be downright chummy. “Should we respond to it as per usual?” Albright asked in another July 2019 email about a new complaint filed by a doctor in Washington state. “Send the Zelis response for documentation purposes,” Wheeler responded in between banter that she and Albright exchanged about Chicago’s winter weather (bad) and architecture (great).

Shteynshlyuger was growing more frustrated. He didn’t understand why CMS had yanked the notice about the prohibition on fees from its website. If his months of effort couldn’t extract clear answers, how could other doctors with less inclination for bureaucratic battle figure out what to do?

What Shteynshlyuger didn’t know was that, less than two years earlier, a lobbying campaign had begun behind the scenes at CMS. The documents that he eventually obtained would provide a rare, nearly day-by-day glimpse into how one lobbyist — Albright — managed to bend the agency to his will with an artful combination of cajoling, argument and legal threats.

On Aug. 11, 2017, CMS’ website had posted the notice that EFT fees were prohibited. Such notices, presented in the form of answers to frequently asked questions, are meant to explain the agency’s complex rules in plain language. CMS based the notice on a rule from 2000 that banned fees in excess of normal telecommunication costs (such as, say, the tiny fractions of a penny to cover the cost of an email) that a doctor would incur if they were receiving the bill “directly” from an insurer.

The notice triggered an immediate protest from Zelis, according to emails and an internal CMS memo. Albright had “multiple conversations” with CMS staff and demanded that the agency revise the notice.

The nub of Albright’s argument was that CMS’ 2000 rule prohibited insurers from charging excessive fees for “direct” transactions. But, he argued, the rule was meant to apply to insurers dealing with doctors. Albright represented payment processors who work for insurers; those weren’t direct transactions between insurers and doctors. Thus, he argued, the fee prohibition couldn’t apply to EFT payments.

CMS, which took months or longer to respond to Shteynshlyuger, quickly complied with Albright’s request and removed the fee notice on Aug. 14, 2017, only three days after it was posted.

CMS published an updated notice in late September 2017. But the agency stood firm on the key point: The new document stated that insurers and payment processors “should not charge providers communications fees” for EFTs.

Shortly after the revised notice went up, Albright emailed the director of the CMS division that issued it. “Hope the kids have settled into the school year okay,” he began. He then asked for “our day in court to educate” the agency. He suggested that Zelis was preparing to escalate its complaints but offered to “work through this without causing too much noise.”

Two days before Thanksgiving, Albright confronted Christine Gerhardt, then deputy director of the CMS division that issued the fee notice. In a phone call, Albright demanded that CMS revise the document again, according to Gerhardt’s summary of the call. Gerhardt refused. Albright began debating her on the legal differences between the explainer and the regulation that it summarized.

The following week, Albright pressed harder, asking Gerhardt whether the prohibition on fees was enforceable. He told Gerhardt that if she did not answer, that itself would be an answer. It would, Albright said, “give me a sense of what steps need to be taken next” to challenge the agency’s notice. Gerhardt, who is now retired, said she assured him that the agency wasn’t implementing a new rule; only clarifying existing rules. Albright was pushing hard, but at that point, Gerhardt hadn’t bent.

Then, in January 2018, Zelis brought in the lawyers. A firm called Nixon Peabody wrote to CMS, demanding that the agency “withdraw or correct the offending language” in its notice. Nixon Peabody argued that the fee prohibition wasn’t a restatement of existing rules but that it amounted to a new rule that should have been issued via the formal rulemaking process. Nixon Peabody threatened to sue if CMS didn’t comply with Zelis’ demand. (Nixon Peabody did not reply to a request for comment.)

The legal threat set off a scramble within CMS. “Let’s just take it down,” Gerhardt wrote in a Feb. 9, 2018, email to colleagues. Her division not only removed the notice saying that fees were prohibited but also went so far as to institute a moratorium on any new notices. CMS was essentially depriving all medical providers of guidance on these issues because one company had complained.

The response puzzled even some within CMS. “What was the basis for withdrawal if the request was from a single entity and potentially harms providers?” Jackson, then CMS deputy chief of operations, wrote in an email.

Albright, his goal accomplished, sought to soothe Gerhardt and two of her colleagues. “I know I butted heads with all three of you,” he wrote a few weeks later. Albright offered to meet to explain why Zelis is not “one of the bad guys in this area.” (Zelis did not address detailed questions about Albright’s interactions with CMS.)

In March 2018, after Zelis complained and CMS removed a notice saying that payments to doctors couldn’t carry fees, Albright emailed three key agency staffers to patch things up. (Email exchange provided by Alex Shteynshlyuger)

CMS told ProPublica in a statement that it reversed its position because it concluded that it had no legal authority to “flat-out prohibit fees.” The agency declined to comment on Shteynshlyuger’s complaints, but said it takes seriously any allegations of noncompliance with its rules. As for Zelis’ lobbying, CMS said it “receives feedback from a wide range of stakeholders on an ongoing basis. The information received helps the agency understand where guidance and clarification of existing policy may be needed.”

The American Medical Association and over 90 other physician groups have urged the Biden administration to reinstate guidance protecting doctors’ right to receive EFTs without fees. For its part, the massive Veterans Health Administration system has been refusing to pay the fees, which it has described as illegal in letters to Zelis and insurers.

So far the protests have had no visible effect. In fact, when CMS finally issued a new explainer that addressed fees in July 2022, more than four years after erasing the previous one, the agency made explicit what had previously been implicit: EFT fees are allowed.

Shteynshlyuger is continuing his lonely campaign. Two months after CMS stated that fees are OK, a Zelis customer service representative contacted him. Shteynshlyuger had just submitted his 80th complaint to CMS. Emails show the rep offered to help him get signed up for no-fee EFTs — but the offer only applied to payments from one of the more than 700 insurers and other payers that Zelis represents. Shteynshlyuger demurred, saying he did not want the issue resolved without CMS’ intervention because then other doctors could not get the same assistance. As often as not, Shteynshlyuger and other doctors are left with little recourse; many insist on being paid by paper check rather than allowing Zelis to take a cut.

In mid-December, Shteynshlyuger finally got the long-awaited replies to eight other complaints he had filed over the years. CMS dismissed all eight because Shteynshlyuger didn’t file them against insurers but instead against companies like Zelis, which CMS referred to as “business associates” of the insurers. CMS said it now believes its oversight extends only to insurers, not to their business associates. The phrasing may have been bureaucratic, but the news was dramatic: CMS had fully surrendered, giving up on regulating payment processors entirely.

Shteynshlyuger hasn’t filed a new document request yet to uncover whether Zelis or perhaps another company influenced that decision. He has his suspicions.

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

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

by Isabelle Taft, Mississippi Today, with data analysis by Agnel Philip, ProPublica, reporting by Mollie Simon, ProPublica

This article contains detailed descriptions of mental illness and suicide.

This article was produced for ProPublica’s Local Reporting Network in partnership with Mississippi Today. It was also co-published with Sun Herald, Northeast Mississippi Daily Journal and The Guardian. Sign up for Dispatches to get stories like this one as soon as they are published.

If you or someone you know needs help:

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When sheriff’s department staff in Mississippi’s Benton County took Jimmy Sons into custody several years ago, they followed their standard protocol for people charged with a crime: They took his mug shot, fingerprinted him, had him change into an orange jumpsuit and locked him up.

But Sons, who was then 20 years old, had not been charged with a crime. Earlier that day, his father, James Sons, had gone to a county office to ask that his youngest son be taken in for a mental evaluation and treatment. Jimmy Sons had threatened to hurt family members and himself, and his father had come across him sitting on his bed with a loaded shotgun.

On Sons’ booking form, in the spot where jailers usually record criminal charges, was a single word: “LUNACY.”

The booking form for Jimmy Sons, identifying his “offense” as “lunacy” (Obtained by Mississippi Today)

In every state, people who present a threat to themselves or others can be ordered to receive mental health treatment. Most states allow people with substance abuse problems to be ordered into treatment, too. The process is called civil commitment.

But Mississippi Today and ProPublica could not find any state other than Mississippi where people are routinely jailed without charges for days or weeks during that process.

What happened to Sons has occurred hundreds of times a year in the state.

The news organizations examined jail dockets from 19 Mississippi counties — about a quarter of the state’s 82 — that clearly marked bookings related to civil commitments. All told, people in those counties were jailed at least 2,000 times for civil commitments alone from 2019 to 2022. None had been charged with a crime.

Most were deemed to need psychiatric treatment; others were sent to substance abuse programs, according to county officials.

Since 2006, at least 13 people have died in Mississippi county jails as they awaited treatment for mental illness or substance abuse, Mississippi Today and ProPublica found. Nine of the 13 killed themselves. At least 10 hadn’t been charged with a crime.

A woman going through the civil commitment process, wearing a shirt labeling her a “convict,” is transported from her commitment hearing back to a county jail to await transportation to a state hospital in north Mississippi this spring. (Eric J. Shelton/Mississippi Today)

We shared our findings with disability rights advocates, mental health officials in other states and 10 national experts on civil commitment or mental health care in jails. They used words such as “horrifying,” “breaks my heart” and “speechless” when they learned how many people are jailed in Mississippi as they go through the civil commitment process.

Some said they didn’t see how it could be constitutional.

“If an ER is full, you don’t send people to jail,” said Megan Schuller, legal director of the Bazelon Center for Mental Health Law, a Washington, D.C.-based organization. “This is just outright discriminatory treatment in my view.”

Mississippi Today and ProPublica also interviewed 10 individuals who had been committed and jailed, as well as 20 family members.

Many of those people said they or their family members had been housed alongside criminal defendants. Nobody knew how long they would be there. They were often shackled when they left their cells. Some of them said they couldn’t access prescribed psychiatric medications or had minimal medical care as they experienced withdrawal from illegal drugs.

“It felt more criminal than, like, they were trying to help me,” said Richard Millwood, who was booked into the DeSoto County jail in 2020 following an attempted suicide. “I got the exact same treatment in there as I did when I was in jail facing charges. In fact worse, in my opinion, because at least when I was facing charges I could bond out.”

“I got the exact same treatment in there as I did when I was in jail facing charges. In fact worse, in my opinion, because at least when I was facing charges I could bond out.” — Richard Millwood, who was booked into jail following an attempted suicide

DeSoto County leadership, informed of Millwood’s statement, did not respond.

Millwood spent 35 days in jail before being admitted to a publicly funded rehab program 90 miles away.

Jimmy Sons didn’t receive a mental evaluation when he was booked into the Benton County jail in September 2015, according to documents in a lawsuit his father later filed. Less than 24 hours later, he was dead. Left alone in a cell without regular visits by jail staff, he had hanged himself.

He had been back in Mississippi for just a few days, planning to join his dad in electrical work, said his mother, Juli Murray. He had set out from her home in Bradenton, Florida, so early in the morning that he didn’t say goodbye.

Murray remembers the phone call from Jimmy’s half-brother in which she learned her son was in jail. She didn’t understand why.

“If you do something wrong, that’s why you’re in jail,” she said. “Not if you’re not mentally well. Why would they put them in there?”

The Lesser Sin

When James Sons went to the clerk’s office in the tiny town of Ashland to file commitment paperwork for his son, he took the first step in Mississippi’s peculiar, antiquated system for mandating treatment for people with serious mental health problems.

Jimmy Sons at age 18 at his father’s home in Mississippi (Courtesy of John Sons)

It starts when someone — usually a family member, but it could be almost anyone — signs a form alleging that the person in question is “in need of treatment because the person is mentally ill under law and poses a likelihood of physical harm to themselves or others.”

James Sons filled out that form, listing why he was concerned: Jimmy’s guns, his threats, his talk of suicide.

Then a special master — an attorney appointed by a chancery judge to make commitment decisions — issued a “Writ to Take Custody.” It instructed sheriff’s deputies in Benton County, just south of the Tennessee border, to hold Jimmy Sons at the jail until he could be evaluated.

The sheriff’s office asked Sons to come in on an unrelated matter. When he showed up, Chief Deputy Joe Batts told him he needed a mental health evaluation. Batts tried to reassure Sons that the process would be as quick as possible and would end with him back home, according to Batts’ testimony in the lawsuit Sons’ father filed over his death.

Then Batts told Sons, “What we’re going to have to do now is take you back and book you.”

What he never told Sons, he later acknowledged in a deposition, was that the young man would have to wait in jail for days before he would see a mental health provider. The first screening required by law was four days away. If it concluded he needed further examination, he would be evaluated by two more medical professionals. Then the special master would decide whether to order him into treatment at a state psychiatric hospital.

The whole process should take seven to 10 days, according to the state Department of Mental Health. But sometimes it takes longer, the news organizations found. And if someone is ordered into treatment at their hearing, they generally have to wait for a bed, though the department says average wait times for state hospital beds after hearings have dropped dramatically in the last year.

While waiting for their hearing, people like Sons are supposed to receive treatment at a hospital or a short-term public mental health facility called a crisis stabilization unit. But state law does allow people to be jailed before their commitment hearing if there is “no reasonable alternative.” (The law is less clear about what’s allowed following a hearing.)

The Benton County Sheriff’s Department formerly housed the county jail where Jimmy Sons died, in Ashland, Mississippi. (Eric J. Shelton/Mississippi Today)

Mississippi Today and ProPublica spoke to dozens of officials across Mississippi involved in the commitment process: clerks who handle the paperwork, chancery judges and special masters who sign commitment orders, sheriffs who run the jails, deputies who drive people from jails to state hospitals, and the head of the state Department of Mental Health.

None of them thinks jail is the right place for people awaiting treatment for mental illness.

“We’re not a mental health hospital,” said Greg Pollan, president of the Mississippi Sheriffs’ Association and the sheriff of rural Calhoun County in the north of the state. “We’re not even a mental health Band-Aid station. That’s not what we do. So they should never, ever see the inside of my jail.”

Batts himself, who took Sons into custody in Benton County, said law enforcement officers across Mississippi “hate to detain people like that. But we’re told we have to do it.” He acknowledged that the facility “was substandard to begin with, not having the space and the adequate facilities to hold and monitor someone in that mental state — it just puts everybody in a bad situation.” And he said he thought the state could provide alternatives to jail.

Some counties jail most people going through the commitment process for mental illness, Mississippi Today and ProPublica found. Other counties reserve jail for people who are deemed violent or likely to hurt themselves. And at least a handful sometimes jail people committed for substance abuse — even though a 2021 opinion by the state’s attorney general says that isn’t allowed under state law.

This happens because until people are admitted to a state hospital, counties are responsible for covering the costs of the commitment process unless the state provides funding. If a crisis stabilization unit is full or turns someone away, the county must find an alternative, and it must foot the bill.

Counties can place patients in an ER or contract with a psychiatric hospital — and some do — but many officials balk at the cost. Many officials, particularly those in poor, rural counties, see jail as the only option.

“You have to put them somewhere to monitor them,” said Cindy Austin, chancery clerk in rural Smith County, located in central Mississippi. Chancery clerks are responsible for finding beds for people going through the commitment process. “It’s not that anybody wants to hold them in jail, it’s just we have no hospital here to hold them in.”

Timothy Gowan, an attorney who adjudicated commitments in Noxubee County from 1999 to late 2020, said people going through the commitment process there generally were jailed if they were determined to be violent and their family didn’t want them at home.

According to the Noxubee County jail docket, people going through the civil commitment process with no criminal charges were booked into the jail about 50 times from 2019 to 2022. Ten stays lasted at least 30 days. The longest was 82 days.

“Putting a sick person in a jail is a sin,” Gowan said. “But it’s the lesser of somebody getting killed.”

Some counties rarely hold people in jail — sometimes because a sheriff, chancery judge or other official has taken a stand against it. Rural Neshoba County in central Mississippi pays Alliance, a psychiatric hospital in Meridian, to house patients.

“We’re not a mental health hospital. We’re not even a mental health Band-Aid station. That’s not what we do. So they should never, ever see the inside of my jail.” — Greg Pollan, president of the Mississippi Sheriffs’ Association and sheriff of Calhoun County

The practice isn’t confined to poor, rural counties. DeSoto County, a populous, relatively wealthy county near Memphis, jailed people without charges about 500 times over four years, the most of any of the counties analyzed by Mississippi Today and ProPublica. The median jail stay there was about nine days; the longest was 106.

The state and county recently set aside money to build a crisis stabilization unit — currently, the nearest one is about 40 miles away — but the county and the local community mental health center haven’t decided on a location, said County Supervisor Mark Gardner.

Some county officials say that keeping people out of jail during the process requires the state to step up. State Rep. Jansen Owen, a Republican from Pearl River County in southern Mississippi who represents people during the commitment process, said he believes counties that spend “millions of dollars on fairgrounds and ballparks” could find alternatives to jail. But he also sees a need for more state-funded facilities.

“You can’t just throw it on the counties,” he said. “It’s a state prerogative. And them being held in the jail, I think, is a result of the state kicking the can down the road to the counties.”

Wendy Bailey, head of the state Department of Mental Health, said it’s “unacceptable” to jail people simply because they may need behavioral health treatment. Department staff have met with chancery clerks around the state to urge them to steer families away from commitment proceedings and toward outpatient services offered by community mental health centers whenever possible.

The Department of Mental Health says it prioritizes people waiting in jail when making admissions to state hospitals. The state has expanded the number of crisis unit beds from 128 in 2018 to 180 today, with plans to add more. And it has increased funding for local services in recent years in an effort to reduce commitments.

But Bailey said the department has no authority to force counties to change course, nor legal responsibility for people going through the commitment process until a judge orders them into treatment at a state psychiatric hospital.

Locked In the “Lunacy Zone”

Willie McNeese’s problems started after he came home to Shuqualak, Mississippi, a town of about 400 people and a lumber mill, in 2007. He had spent a decade in prison starting at age 17.

He found the changes that had taken place — bigger highways, cellphones — overwhelming, said his sister, Cassandra McNeese. He was eventually diagnosed with bipolar disorder.

“It’s like a switch — highs and lows,” said Willie McNeese, now 43. “I might have a whole lot of laughter going on, trying to make the next person laugh. Then my day going down, I be depressed and worried about situations that nobody can change but God.”

McNeese has been involuntarily committed in Noxubee County 10 times since 2008 and has been jailed during at least eight of them, one for more than a month in 2019 according to court records and the jail docket. During his most recent commitment starting in March 2022, McNeese was held in jail for a total of 58 days in two stints before eventually going to a state psychiatric hospital.

Cassandra McNeese, left, and her mother, Yvonne A. McNeese, in Shuqualak, Mississippi. Cassandra’s brother, Willie McNeese, has been held in jail during civil commitment proceedings at least eight times since 2008. Cassandra McNeese said Noxubee County officials told her jail was the only place they had for him to wait. ”This is who you trust to take care of things,” she said. ”That’s all you have to rely on.” (Eric J. Shelton/Mississippi Today)

From 2019 to 2022, about 1,200 civil commitment jail stays in the 19 counties analyzed by Mississippi Today and ProPublica lasted longer than three days. That’s about how long it can take for people to start to experience withdrawal from a lack of psychiatric medications, which jails don’t always provide. About 130 stays lasted more than 30 days.

McNeese said he spent much of his time in jail last year standing near the door of his cell, what jail staff called the “Lunacy Zone,” screaming to be allowed to take a shower. A jailer tased him to quiet him down, and his clothes were taken from him. For a period, his mattress was taken, too.

“It’s a way of punishment,” he said. “They don’t handle it like the hospital. If you have a problem in the hospital they’ll come with a shot or something, but they don’t take your clothes or take your mattress or lock your door on you or nothing like that.”

McNeese said he had inconsistent access to medication and received none during his first stay in 2022, which lasted 25 days.

The Noxubee County Sheriff’s Department did not respond to questions about McNeese’s allegations.

Staff from Community Counseling, the community mental health center where McNeese had regular appointments, could have provided him with medication, but McNeese said no one from the center came to visit him in jail. A therapist at Community Counseling said staff go to the jail only when they’re called, usually when there’s a problem jail staff can’t handle. Rayfield Evins Jr., the organization’s executive director, said when he recently worked in Noxubee, deputies brought people from the jail to his facility for medication and treatment.

“If you have a problem in the hospital they’ll come with a shot or something, but they don’t take your clothes or take your mattress or lock your door on you or nothing like that.” — Willie B. McNeese, jailed multiple times following a diagnosis for bipolar disorder

“If you have a problem in the hospital they’ll come with a shot or something, but they don’t take your clothes or take your mattress or lock your door on you or nothing like that.”

If you have a problem in the hospital they’ll come with a shot or something, but they don’t take your clothes or take your mattress or lock your door on you or nothing like that.”

Willie B. McNeese, jailed multiple times following a diagnosis for bipolar disorder

Mental health advocates in Mississippi and other people who have been jailed during the commitment process said the limited mental health treatment McNeese received is common.

Mental health care varies widely from jail to jail, and no state agency sets requirements for what care must be provided. Jails can refuse to distribute medications that are controlled substances, which includes anti-anxiety medications like Xanax. The state Department of Mental Health says counties should work with community mental health centers to provide treatment to people waiting in jail as they go through the commitment process.

But those facilities generally don’t have the resources to provide services in jails, said Greta Martin, litigation director for Disability Rights Mississippi.

Martin’s organization, one of those charged by Congress with advocating for people with disabilities in each state, investigates county jails when it receives complaints. “We are not seeing any indication that these individuals are getting any mental health treatment while they are being held in these county facilities,” she said.

Willie McNeese was incarcerated at the old jail in Noxubee County multiple times during civil commitment processes, including his first commitment in 2008. (Eric J. Shelton/Mississippi Today)

McNeese said those jail stays added physical discomfort and pain to the delusions that got him committed in the first place. “Then you get to the mental hospital — they have to straighten you all the way back over again,” he said.

Since being released from the state hospital last year, McNeese said, he has been doing well. He is now living in Cincinnati with his wife.

Scott Willoughby, the program director at South Mississippi State Hospital in Purvis, said it can be hard to earn patients’ trust when they arrive at the psychiatric hospital from jail.

At his facility, patients sleep two to a room in a hall decorated with photographs of nature scenes. Group counseling sessions are often held outside under a gazebo. In between, patients draw and paint during recreational therapy.

Willoughby has spoken with patients who had attempted suicide and were shocked to find themselves in jail as a result.

“People tend to associate jail with punishment, which is exactly the opposite of what a person needs when they’re in a mental health crisis,” he said. “Jail can be traumatic and stigmatizing.”

“I’m More Scared of Myself”

When Sons learned that he was going to be booked, he became anxious about being locked in a cell, Batts testified. So he was assigned to an area of the jail reserved for trusties — inmates who are allowed to work, sometimes outside the jail, while they serve their sentences.

On the afternoon of his first day in jail, Sons was sitting on his bed when a trusty named Donnie Richmond returned from work. Richmond said in a deposition that he asked a deputy who the new guy was.

“You better watch him,” Richmond recalled the deputy telling him. “He kind of off a little bit.”

Richmond offered Sons a cigarette and cookies and asked him why he was there. Sons took a cigarette and told Richmond the deputies had said he would hurt someone.

“He was like, ‘Man, I’m going to be honest with you,’” Richmond testified. “‘I ain’t going to hurt no one. I’m more scared of myself, of hurting myself.’”

Sons was not placed on suicide watch. The jail’s suicide prevention policy applied only to those who had attempted suicide in the jail, although attorneys for the jail officials in the lawsuit over his death said there was an unwritten policy to closely monitor people going through the commitment process.

An excerpt of the Benton County Sheriff’s Department’s suicide prevention policy at the time of Sons’ death (Obtained by Mississippi Today)

That evening, Sons told a jailer he was feeling anxious around the other men. He asked to be moved to a cell by himself.

A guard took him to a cinder block cell with no windows. There was no television and nothing to read. He was given a blanket.

A security camera in Sons’ cell was supposed to allow jail staff to watch him at all times. But jail officials said in depositions that no one noticed anything unusual the next morning.

At 11:28 a.m., Sons rose from his bunk bed, walked to the door and placed his ear near it. He went back to his bunk, fashioned a noose and tied it around his neck. He sat there for three minutes before hanging himself, according to a narrative of the video in court records.

He stopped moving just before 11:38 a.m. A trusty serving lunch peeked through a tray opening in the door 48 minutes later and saw his body.

The door of the Benton County Jail cell where Sons was held (Obtained by Mississippi Today)

Sons’ father sued Benton County, the sheriff and several of his employees over his death. The defendants denied in court filings that they were responsible, but the county’s insurance company eventually settled the case for an undisclosed sum. (All that’s publicly known is that the county paid a $25,000 policy deductible toward defense costs.)

Sheriff’s department staff said in depositions they had kept an eye on Sons, but they couldn’t watch the video feed constantly. Lawyers for the defendants said there was no evidence sheriff’s department employees knew someone could kill himself in the way Sons did.

Sheriff A. A. McMullen, who is no longer in office, acknowledged in a deposition that “any mental commitment is a suicide risk,” but he said he wasn’t sure it would have made a difference if Sons had been placed on suicide watch.

“You could write up the biggest policy in the world and you couldn’t prevent it. There’s no way. God knows, you know, it hurts us,” he said. “If they’re going to do it, they’re going to do it.”

McMullen couldn’t be reached for comment for this story.

In an interview, jail administrator Kristy O’Dell, who joined the department after Sons died, said the jail still holds two or three people going through the commitment process each month.

John S. Farese, an attorney for Benton County, told Mississippi Today and ProPublica that the county, like others, “does the best they can do with the resources they have to abide by the laws” regarding commitments. He said the sheriff and the county will try to adapt to any changes in the law “while still being mindful of our limited personnel and financial resources.” He declined to comment on the specifics of the Sons case, which he didn’t work on.

Murray, Sons’ mother, was at a grocery store around noon the day her son died. As she picked out a watermelon, she thought about him, a fitness buff who loved fruits and vegetables. A strange thought crossed her mind: “Jimmy’s never going to eat watermelon again.”

When she got home, she got the call that he was gone.

John Sons, Jimmy’s half-brother, wrote in a text to Mississippi Today and ProPublica that the family is left with “complete and total guilt for putting him in the prison and always the wonder if we would not have done that move, if he would be with us today.”

But Richmond, the trusty who briefly shared a cell with Sons, testified that it was jail staff who “messed up.”

“He hung himself,” Richmond said. “I say this. God forgive me if I’m wrong. We couldn’t have saved that man from killing himself, but we could have saved that man from hanging himself in that jail.”

How We Reported This Story

No one in Mississippi has ever comprehensively tracked the number of people jailed at any point during the civil commitment process, according to interviews with dozens of state and county officials.

Last year, the state Department of Mental Health released, for the first time, a tally of people who were admitted to a state hospital directly from jail following civil commitment proceedings. The department tracked 734 placements in fiscal year 2022. (Under a law that takes effect this year, every county must regularly report to the department data regarding how often people are held in jail both before and after their commitment hearings.)

But that figure understates the scope of commitments. It doesn’t include people who were sent places other than a state hospital for treatment or who were released without being treated, and it counts only the time people spent in jail after their hearings. People can be jailed for 12 days before a commitment hearing, or longer if a county doesn’t follow the law.

County jail dockets can provide a more comprehensive picture, so Mississippi Today and ProPublica requested them from 80 of Mississippi’s 82 counties. Seventeen counties provided dockets that clearly marked bookings related to civil commitments — with notes including “writ to take custody,” “mental writ” and “lunacy.” In two more counties, we reviewed dockets in person.

Many counties didn’t respond, said their records were available only on paper or declined to provide records. Some cited a 2007 opinion by the state attorney general that sheriffs may choose not to enter the names of people detained during civil commitment proceedings onto their jail dockets.

After cleaning and standardizing the data from the dockets, we counted the number of jail stays involving civil commitments in which the person was not booked for a criminal charge on the same day. (We ended up excluding about 750 civil commitments for that reason.) If the dockets provided booking and release dates, we calculated the duration of jail stays.

Our count of commitments includes those for both mental illness and substance abuse. None of the jail dockets specified which commitment process people were going through, although some county officials said they don’t jail people committed for substance abuse and haven’t for years.

State laws regarding commitment for mental illness and substance abuse are different, but in many counties they were handled similarly until late 2021. That’s when the Mississippi attorney general’s office said state law didn’t allow people going through the drug and alcohol commitment process to be jailed.

To identify deaths of individuals held in jail during the civil commitment process, we reviewed news articles and federal court records. We also reviewed nearly 90 investigations of jail deaths from the Mississippi Bureau of Investigation. Most of the deaths had not previously been publicly reported.

For our survey of practices in other states, we contacted agencies overseeing mental health and disability advocacy organizations in every state and Washington, D.C. We received responses from one or the other in every location, and we received responses from both in 33. We also searched for news reports of similar cases in other states.

Do you have a story to share about someone who went through the civil commitment process in Mississippi? Contact Isabelle Taft at itaft@mississippitoday.org or call her at 601-691-4756.

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

by Ruth Talbot

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

“Nursing Home Inspect” makes it fast and easy to search thousands of recent government inspection reports, find information about specific nursing homes and discover new serious issues found by inspectors. Below are some tips to help you make the most of our database.

First, a little background.

Nursing homes receiving Medicare and Medicaid funding are subject to inspections to determine whether they are meeting requirements related to medical care, resident rights and safety. The facilities are inspected both routinely and when the government receives a complaint about a home. A nursing home’s failure to meet any of these requirements is called a “deficiency” and is documented in an inspection report.

These inspection reports and other nursing home data are compiled by the Centers for Medicare and Medicaid Services, which runs a site called Nursing Home Care Compare. Unlike the agency’s site, however, “Nursing Home Inspect” offers an advanced search function that allows you to search across all the reports at once. Also unlike CMS, our app allows searches by keywords, date ranges, states or territories, deficiency seriousness, report types and deficiency categories. So, for example, you can limit your search to finding any nursing home in Louisiana or Texas where inspectors documented serious deficiencies involving choking. Our app also provides summaries of the reports on each nursing home’s page to make them easier to digest.

As of today, the underlying database covers nearly 400,000 deficiencies from over 90,000 reports at over 15,000 homes. It is updated monthly to include new data and deficiencies. In addition to allowing you to search reports, the database also provides other information about nursing homes, including fines, whether the home is for-profit or nonprofit, staffing and capacity information, and COVID-19 vaccination information.

Understanding Inspection Reports

All deficiencies in a report have a seriousness score between A and L. These scores are assigned by government inspectors, not ProPublica. Scores are a combination of scope, or how widespread a problem is, and severity, or the level of harm inflicted. Broadly speaking, A is the least serious and L is the most serious. Letters J, K and L indicate residents were in “immediate jeopardy,” meaning they were at risk of serious injury, harm, impairment or death.

Inspection reports only focus on problems, not on whether residents get excellent care, so they should be used alongside other information such as staffing and ownership when assessing a home’s overall performance. Experts recommend that family members visit a home and see it for themselves before making decisions about where to place a loved one. Almost all nursing homes have been cited for some deficiencies, so citations are not necessarily an indication that a home is subpar.

On the flip side, the government isn’t aware of all problems in nursing homes, and some homes have not been inspected recently. If a home has not had a standard inspection in more than two years, it will have an “inspections delayed” flag at the top of its page. A home without recent reports may have undiscovered issues.

Find Homes Near You

ProPublica has redesigned its search experience to make finding nursing homes easier. When you type a word into search, it will auto-populate with relevant nursing homes, states and counties.

If you do not see the result you are looking for, you can narrow your search by choosing the type of result in the dropdown next to the search bar. For instance, if you are looking for a county, you can change the dropdown to “counties.”

If you do not see the search term you are looking for, you can select “Search all inspection reports and home names for …” or hit enter to view all results. Select the “homes” tab to see a list of homes with names that match your search. For instance, you can search for all homes with “view” in their name.

You can also go to a state, territory or county page and explore all homes in the area. For instance, if you are interested in homes near Chicago, you can go to the Cook County page or the Illinois state page. You can sort by lowest deficiency count or lowest total fines to find homes that haven’t been cited frequently.

Evaluating a Nursing Home

To make it easier to identify important characteristics of a home, a nursing home’s page may have one of several flags at the top. These show status indicators like whether the home is a “special focus facility,” meaning it has been cited by the government for having a history of serious quality issues; whether a home is behind on its inspections, meaning it hasn’t had a standard inspection in over two years; whether its staff vaccination rate is well below the state average; and whether the facility’s ownership has changed in the last 12 months.

Every page also has summary data about the home, including staffing levels, capacity information, and whether the home is for-profit or nonprofit.

If you’re looking for detailed information about a nursing home’s inspection history, there’s a section on each home’s page where you can review the last three inspection cycles (roughly 12-18 months each) and the last three years of complaint or infection reports.

Each report tells you the number of deficiencies found in the inspection, as well as the date of the report. To see more information about each deficiency, click the “read more” button to see the category, description and seriousness of each issue found.

Finding Recent Deficiencies

To make it easier to identify recent, serious problems in homes, ProPublica added a section for each state to highlight the most recent deficiencies that were categorized as putting residents in immediate jeopardy. These provide information on the type of deficiency and the home it occurred in, and they allow you to go to the report summary to view more information. Smaller states or states that are delayed on their inspections may not have any serious deficiencies in the last few months.

How to Do an Advanced Search

Our search engine looks through the narrative portion of the inspection reports — the part where inspectors describe conditions in the home and any deficiencies they have discovered. This is where you can find the most details about problems reported in a nursing home. Conducting an advanced search allows you to narrow down your results or combine multiple search parameters.

Text Search

Our search engine supports basic word stemming, meaning a search for the term elope will also produce results for elopes, eloping and so on. If you want to search for an exact term or phrase, put the words in quotation marks. For instance, if you want to search for medication, but not medicate or medicating, search for “medication”.

Advanced search also supports searching for multiple terms simultaneously. For example, if you want to search for reports that contain either theft or steal, you can enter theft OR steal and see results for deficiencies that contain either term. If you want to search for reports with both theft and steal in them, a search for theft AND steal will produce only deficiencies that contain both words.

You can also build more advanced queries. For example, (“theft” AND “steal”) OR rob will produce deficiencies reports that contain either both the words theft and steal exactly, or any version or the word rob (robbing, robbed, etc.).

Filters

The advanced search feature allows you to narrow your search by several criteria, including searching across multiple states, deficiency seriousness scores, deficiency categories and report types (standard reports, reports stemming from a complaint or infection reports) simultaneously.

Users can also search reports in a specific date range. For instance, if you are only interested in reports filed during the first six months of the COVID-19 pandemic, you can filter for reports dated between 3/11/2020 and 9/11/2020.

Term Tips

Inspectors may write up their reports differently. Try several search terms to be sure you’re getting the most complete results. For example, take a common problem like bedsores, which can develop if a resident is confined to bed and staff do not turn the person often enough.

Searching for the phrase “pressure sore” returns 2,318 reports. Searching for the word “bedsore” returns 84 results. Searching for the phrase “pressure ulcer” returns 14,018 results. But other words that also can return deficiencies related to bedsores include: decubitus, purulent and pus, as well as Stage III and Stage IV (phrases that describe the most serious and dangerous sores, but can also describe cancer progression). A search for “bedsore” OR “pressure sore” OR “decubitus” OR “purulent” OR “pus” or “pressure ulcer” returns 15,075 total results.

Some other searches that piqued our interest were: cigarette AND burn (found patients who were burned when allowed to smoke without supervision); conviction (found nursing home staff with criminal records); ignore OR mistreat OR rude (found residents who believed that staff had been unkind or neglectful).

A search for the words terminate OR suspend often produces results involving nursing home staff who were disciplined for alleged misconduct.

In the advanced search, you can also filter by deficiency categories such as “Quality of Life and Care Deficiencies” or “Freedom from Abuse, Neglect, and Exploitation Deficiencies.”

Understanding Search Results

When you search for a keyword, our app only returns the number of deficiencies that match the search criteria, not the overall number of deficiencies cited in each report. To count total deficiencies for a home or a specific report, you can visit the home’s page in “Nursing Home Inspect.”

Always read the reports and understand the terms in context by clicking on the PDF link in the search results. Some reports mention the words you’re searching in the text but they don’t describe a problem at the home. The word could be in a home’s policy statement or may describe past behavior.

The reports contain a lot of jargon and sometimes don’t make clear who is at fault for a problem. Don’t make assumptions. Verify information with the nursing home’s administrator.

Additional Information

Although the government is reporting nursing home deficiencies online, it does not report how each home plans to fix the problems. These “Plans of Correction” can be viewed at the nursing home or by submitting a Freedom of Information request to the government.

You can always view more information by going to CMS’ own website or downloading the raw data files.

Earlier reports or unredacted reports can be requested under the Freedom of Information Act.

If you write a story using this information, come across bugs or issues, or have ideas for improvements, please let us know!

Charles Ornstein contributed reporting.

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

by Ruth Talbot

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

Join us for an upcoming live virtual event, “How to Use ProPublica’s Updated ‘Nursing Home Inspect’ Database.”

ProPublica has updated “Nursing Home Inspect,” our database that helps you find problems that inspectors identified in more than 15,000 U.S. nursing homes, to make it easier to search government reports and browse serious issues. We’ve added new data, a redesigned user interface and advanced search features.

We have expanded the database’s search capabilities, adding advanced search features that allow users to search reports in multiple states or territories, filter by type of inspection report, focus on inspections within a date range, and look specifically at reports with certain kinds of issues, also called “deficiencies.” These filters will allow journalists and others to quickly identify problematic homes in their searches, and will make it easier for curious researchers to ask advanced questions of the data.

Our new advanced text search features allow users to search for multiple terms simultaneously by separating terms using AND or OR or to search for exact phrases by putting terms in quotation marks. The search also allows users to search for a word like “elope” and automatically see results for other forms of the word, like “elopement” and “eloping.” For more information, please read our guide on how to use nursing home inspect.

To aid local journalists and others, we’ve added a section to each state or territory’s page highlighting serious deficiencies found in that location, allowing users to quickly identify homes that were recently cited for putting residents in immediate jeopardy. We’ve also added pages where you can see all nursing homes in a given county.

The database now also includes information on how many hours, on average, a registered nurse spends with residents and on nursing staff turnover, both of which experts say are indicators of the quality of care in a home. Pages for individual homes now show flags indicating whether the home’s ownership has changed in the last 12 months, whether the home is behind schedule on government inspections, and whether the staff’s COVID-19 vaccination rates are low relative to other homes.

In addition, we now have an expanded view of inspection reports that allows users to see detailed information about each deficiency, including its scope and severity, category and description.

ProPublica plans to continue enhancing “Nursing Home Inspect” with new data and features in the coming months. If you write a story using this new information, come across bugs or issues, or have ideas for improvements, please let us know!

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

by Robin Fields

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

It’s one of the most crucial questions people have when deciding which health plan to choose: If my doctor orders a test or treatment, will my insurer refuse to pay for it?

After all, an insurance company that routinely rejects recommended care could damage both your health and your finances. The question becomes ever more pressing as many working Americans see their premiums rise as their benefits shrink.

Yet, how often insurance companies say no is a closely held secret. There’s nowhere that a consumer or an employer can go to look up all insurers’ denial rates — let alone whether a particular company is likely to decline to pay for procedures or drugs that its plans appear to cover.

The lack of transparency is especially galling because state and federal regulators have the power to fix it, but haven’t.

ProPublica, in collaboration with The Capitol Forum, has been examining the hidden world of insurance denials. A previous story detailed how one of the nation’s largest insurers flagged expensive claims for special scrutiny; a second story showed how a different top insurer used a computer program to bulk-deny claims for some common procedures with little or no review.

The findings revealed how little consumers know about the way their claims are reviewed — and denied — by the insurers they pay to cover their medical costs.

When ProPublica set out to find information on insurers’ denial rates, we hit a confounding series of roadblocks.

In 2010, federal regulators were granted expansive authority through the Affordable Care Act to require that insurers provide information on their denials. This data could have meant a sea change in transparency for consumers. But more than a decade later, the federal government has collected only a fraction of what it’s entitled to. And what information it has released, experts say, is so crude, inconsistent and confusing that it’s essentially meaningless.

The national group for state insurance commissioners gathers a more detailed, reliable trove of information. Yet, even though commissioners’ primary duty is to protect consumers, they withhold nearly all of these details from the public. ProPublica requested the data from every state’s insurance department, but none provided it.

Two states collect their own information on denials and make it public, but their data covers only a tiny subset of health plans serving a small number of people.

The minuscule amount of details available about denials robs consumers of a vital tool for comparing health plans.

“This is life and death for people: If your insurance won’t cover the care you need, you could die,” said Karen Pollitz, a senior fellow at the Kaiser Family Foundation who has written repeatedly about the issue. “It’s all knowable. It’s known to the insurers, but it is not known to us.”

The main trade groups for health insurance companies, AHIP (formerly known as America’s Health Insurance Plans) and the Blue Cross Blue Shield Association, say the industry supports transparency and complies with government disclosure requirements. Yet the groups have often argued against expanding this reporting, saying the burdens it would impose on insurance companies would outweigh the benefits for consumers.

“Denial rates are not directly comparable from one health plan to another and could lead consumers to make inaccurate conclusions on the robustness of the health plan,” Kelly Parsons, director of media relations for the Blue Cross Blue Shield Association, said in an email.

The trade groups stress that a substantial majority of patient claims are approved and that there can be good reasons — including errors and incomplete information from doctors — for some to be denied.

“More abstract data about percentages of claims that are approved or denied have no context and are not a reliable indicator of quality — it doesn’t address why a claim was or was not approved, what happened after the claim was not approved the first time, or how a patient or their doctor can help ensure a claim will be approved,” AHIP spokesperson Kristine Grow said in a written response to questions from ProPublica. “Americans deserve information and data that has relevance to their own personal health and circumstances.”

The limited government data available suggests that, overall, insurers deny between 10% and 20% of the claims they receive. Aggregate numbers, however, shed no light on how denial rates may vary from plan to plan or across types of medical services.

Some advocates say insurers have a good reason to dodge transparency. Refusing payment for medical care and drugs has become a staple of their business model, in part because they know customers appeal less than 1% of denials, said Wendell Potter, who oversaw Cigna’s communications team for more than a decade before leaving the industry in 2008 to become a consumer advocate.

“That’s money left on the table that the insurers keep,” he said.

At least one insurer disputes this. Potter’s former employer, Cigna, said in an email that his “unsubstantiated opinions” don’t reflect the company’s business model. In a separate written statement, Cigna said it passes on the money it saves “by lowering the cost of health care services and reducing wasteful spending” to the employers who hire it to administer their plans or insure their workers.

The few morsels insurers have served up on denials stand in stark contrast to the avalanche of information they’ve divulged in recent years on other fronts, often in response to government mandates. Starting last year, for example, insurers began disclosing the prices they’ve negotiated to pay medical providers for most services.

Experts say it’ll take similar mandates to make insurers cough up information on denials, in part because they fear plans with low denial rates would be a magnet for people who are already ailing.

“Health plans would never do that voluntarily, would give you what their claim denial rates are, because they don’t want to attract sicker people,” said Mila Kofman, who leads the District of Columbia’s Affordable Care Act exchange and previously served as Maine’s superintendent of insurance.

About 85% of people with insurance who responded to a recent Kaiser Family Foundation survey said they want regulators to compel insurers to disclose how often they deny claims. Pollitz, who co-authored a report on the survey, is a cancer survivor who vividly recalls her own experiences with insurance denials.

“Sometimes it would just make me cry when insurance would deny a claim,” she said. “It was like, ‘I can’t deal with this now, I’m throwing up, I just can’t deal with this.’”

Karen Pollitz, a senior fellow at the Kaiser Family Foundation, has written repeatedly about the lack of data on how often insurance companies deny claims. (Alyssa Schukar, special to ProPublica)

She should have been able to learn how her plan handled claims for cancer treatment compared with other insurers, she said.

“There could be much more accountability.”

In September 2009, amid a roiling national debate over health care, the California Nurses Association made a startling announcement: Three of the state’s six largest health insurers had each denied 30% or more of the claims submitted to them in the first half of the year.

California insurers instantly said the figures were misleading, inflated by claims submitted in error or for patients ineligible for coverage.

But beyond the unexpectedly high numbers, the real surprise was that the nurses association was able to figure out the plans’ denial rates at all, by using information researchers found on the California Department of Managed Health Care’s website.

At the time, no other state or federal regulatory agency was collecting or publishing details about how often private insurers denied claims, a 2009 report by the Center for American Progress found.

The Affordable Care Act, passed the following year, was a game changer when it came to policing insurers and pushing them to be more transparent.

The law took aim at insurers’ practice of excluding people with preexisting conditions, the most flagrant type of denial, and required companies offering plans on the marketplaces created under the law to disclose their prices and detail their benefits.

A less-noticed section of the law demanded transparency from a much broader group of insurers about how many claims they turned down, and it put the Department of Health and Human Services in charge of making this information public. The disclosure requirements applied not only to health plans sold on the new marketplaces but also to the employer plans that cover most Americans.

The law’s proponents in the Obama administration said they envisioned a flow of accurate, timely information that would empower consumers and help regulators spot problematic insurers or practices.

That’s not what happened.

The federal government didn’t start publishing data until 2017 and thus far has only demanded numbers for plans on the federal marketplace known as Healthcare.gov. About 12 million people get coverage from such plans — less than 10% of those with private insurance. Federal regulators say they eventually intend to compel health plans outside the Obamacare exchanges to release details about denials, but so far have made no move to do so.

Within the limited universe of Healthcare.gov, Kaiser Family Foundation’s analyses show that insurers, on average, deny almost 1 in 5 claims and that each year some reject more than 1 in 3.

But there are red flags that suggest insurers may not be reporting their figures consistently. Companies’ denial rates vary more than would be expected, ranging from as low as 2% to as high as almost 50%. Plans’ denial rates often fluctuate dramatically from year to year. A gold-level plan from Oscar Insurance Company of Florida rejected 66% of payment requests in 2020, then turned down just 7% in 2021. That insurer’s parent company, Oscar Health, was co-founded by Joshua Kushner, the younger brother of former President Donald Trump’s son-in-law Jared Kushner.

An Oscar Health spokesperson said in an email that the 2020 results weren’t a fair reflection of the company’s business “for a variety of reasons,” but wouldn’t say why. “We closely monitor our overall denial rates and they have remained comfortably below 20% over the last few years, including the 2020-2021 time period,” the spokesperson wrote.

Experts say they can’t tell if insurers with higher denial rates are counting differently or are genuinely more likely to leave customers without care or stuck with big bills.

“It’s not standardized, it’s not audited, it’s not really meaningful,” Peter Lee, the founding executive director of California’s state marketplace, said of the federal government’s information. Data, he added, “should be actionable. This is not by any means right now.”

Officials at the Centers for Medicare & Medicaid Services, which collects the denial numbers for the federal government, say they’re doing more to validate them and improve their quality. It’s notable, though, that the agency doesn’t use this data to scrutinize or take action against outliers.

“They’re not using it for anything,” Pollitz said.

Pollitz has co-authored four reports that call out the data’s shortcomings. An upshot of all of them: Much of what consumers would most want to know is missing.

The federal government provides numbers on insurers’ denials of claims for services from what the industry calls “in-network” medical providers, those who have contracts with the insurer. But it doesn’t include claims for care outside those networks. Patients often shoulder more costs for out-of-network services, ramping up the import of these denials.

In recent years, doctors and patients have complained bitterly that insurers are requiring them to get approval in advance for an increasing array of services, causing delays and, in some instances, harm. The government, however, hasn’t compelled insurers to reveal how many requests for prior authorization they get or what percent they deny.

These and other specifics — particularly about which procedures and treatments insurers reject most — would be necessary to turn the government’s data into a viable tool to help consumers choose health plans, said Eric Ellsworth, the director of health data strategy at Consumers’ Checkbook, which designs such tools.

A spokesperson for CMS said that, starting in plan year 2024, the agency will require insurers offering federal marketplace plans to submit a few more numbers, including on out-of-network claims, but there’s no timeline yet for much of what advocates say is necessary.

Another effort, launched by a different set of federal regulators, illustrates the resistance that government officials encounter when they consider demanding more.

The U.S. Department of Labor regulates upwards of 2 million health plans, including many in which employers pay directly for workers’ health care coverage rather than buying it from insurance companies. Roughly two-thirds of American workers with insurance depend on such plans, according to the Kaiser Family Foundation.

In July 2016, an arm of the Labor Department proposed rules requiring these plans to reveal a laundry list of never-before-disclosed information, including how many claims they turned down.

In addition, the agency said it was considering whether to demand the dollar amount of what the denied care cost, as well as a breakdown of the reasons why plans turned down claims or denied behavioral health services.

The disclosures were necessary to “remedy the current failure to collect data about a large sector of the health plan market,” as well as to satisfy mandates in the Affordable Care Act and provide critical information for agency oversight, a Labor Department factsheet said.

Trade groups for employers, including retailers and the construction industry, immediately pushed back.

The U.S. Chamber of Commerce said complying with the proposal would take an amount of work not justified by “the limited gains in transparency and enforcement ability.” The powerful business group made it sound like having to make the disclosures could spark insurance Armageddon: Employers might cut back benefits or “eliminate health and welfare benefits altogether.”

Trade groups for health insurance companies, which often act as administrators for employers that pay directly for workers’ health care, joined with business groups to blast the proposal. The Blue Cross Blue Shield Association called the mandated disclosures “burdensome and expensive.” AHIP questioned whether the Labor Department had the legal authority to collect the data and urged the agency to withdraw the idea “in its entirety.”

The proposal also drew opposition from another, less expected quarter: unions. Under some collective bargaining agreements, unions co-sponsor members’ health plans and would have been on the hook for the new reporting requirements, too. The AFL-CIO argued the requirements created a higher standard of disclosure for plans overseen by the Labor Department. To be fair and avoid confusion, the group said, the Labor Department should put its rules on ice until federal health regulators adopted equivalent ones for plans this proposal didn’t cover.

That left the transparency push without political champions on the left or the right, former Assistant Secretary of Labor Phyllis Borzi, who ran the part of the agency that tried to compel more disclosure, said in a recent interview.

“When you’re up against a united front from the industry, the business community and labor, it’s really hard to make a difference,” she said.

By the time the Labor Department stopped accepting feedback, Donald Trump had been elected president.

One trade association for large employers pointed out that the Affordable Care Act, which partly drove the new rules, was “a law that the incoming Administration and the incoming leadership of the 115th Congress have vowed to repeal, delay, dismantle, and otherwise not enforce.”

The law managed to survive the Trump administration, but the Labor Department’s transparency push didn’t. The agency withdrew its proposal in September 2019.

A Labor Department spokesperson said the Biden administration has no immediate plan to revive it.

Ultimately, it’s the National Association of Insurance Commissioners, a group for the top elected or appointed state insurance regulators, that has assembled the most robust details about insurance denials.

The association’s data encompasses more plans than the federal information, is more consistent and captures more specifics, including numbers of out-of-network denials, information about prior authorizations and denial rates for pharmacy claims. All states except New York and North Dakota participate.

Yet, consumers get almost no access. The commissioners’ association only publishes national aggregate statistics, keeping the rest of its cache secret.

When ProPublica requested the detailed data from each state’s insurance department, none would hand it over. More than 30 states said insurers had submitted the information under the authority commissioners are granted to examine insurers’ conduct. And under their states’ codes, they said, examination materials must be kept confidential.

The commissioners association said state insurance regulators use the information to compare companies, flag outliers and track trends.

Birny Birnbaum, a longtime insurance watchdog who serves on the group’s panel of consumer representatives, said the association’s approach reflects how state insurance regulators have been captured by the insurance industry’s demands for secrecy.

“Many seem to view their roles as protectors of industry information, as opposed to enforcers of public information laws,” Birnbaum said in an email.

Connecticut and Vermont compile their own figures and make them publicly accessible. Connecticut began reporting information on denials first, adding these numbers to its annual insurer report card in 2011.

Vermont demands more details, requiring insurers that cover more than 2,000 Vermonters to publicly release prior authorization and prescription drug information that is similar to what the state insurance commissioners collect. Perhaps most usefully, insurers have to separate claims denied because of administrative problems — many of which will be resubmitted and paid — from denials that have “member impact.” These involve services rejected on medical grounds or because they are contractually excluded.

Mike Fisher, Vermont’s state health care advocate, said there’s little indication consumers or employers are using the state’s information, but he still thinks the prospect of public scrutiny may have affected insurers’ practices. The most recent data shows Vermont plans had denial rates between 7.7% and 10.26%, considerably lower than the average for plans on Healthcare.gov.

“I suspect that’s not a coincidence,” Fisher said. “Shining a light on things helps.”

Despite persistent complaints from insurers that Vermont’s requirements are time-consuming and expensive, no insurers have left the state over it. “Certainly not,” said Sebastian Arduengo, who oversees the reporting for the Vermont Department of Financial Regulation.

In California, once considered the most transparent state, the Department of Managed Health Care in 2011 stopped requiring insurance carriers to specify how many claims they rejected.

A department spokesperson said in an email that the agency follows the requirements in state law, and the law doesn’t require health plans to disclose denials.

The state posts reports that flag some plans for failing to pay claims fairly and on time. Consumers can use those to calculate bare-bones denial rates for some insurers, but for others, you’d have to file a public records request to get the details needed to do the math.

Despite the struggles of the last 15 years, Pollitz hasn’t given up hope that one day there will be enough public information to rank insurers by their denial rates and compare how reliably they provide different services, from behavioral health to emergency care.

“There’s a name and shame function that is possible here,” she said. “It holds some real potential for getting plans to clean up their acts.”

Kirsten Berg contributed research. David Armstrong and Patrick Rucker contributed reporting.

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

by Caroline Chen

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

The organization that governs U.S. organ transplant policies voted unanimously on Monday to require that donors be tested for a parasitic disease called Chagas.

Last week, ProPublica reported on the death of Bob Naedele, a former police detective from Connecticut who died in 2018 after receiving an infected heart; his death could have been prevented if the donor had been tested for Chagas. The policy change comes after years of recommendations from experts for screening to prevent such deaths.

The new policy, passed by board members of the Organ Procurement and Transplantation Network, will require the groups that recover organs in the U.S. to test the blood of donors born in countries where Chagas disease is prevalent, including Mexico and 20 nations in South and Central America. To be implemented, the policy will need to be approved by the federal Office of Management and Budget.

“My family and I are elated hearing about the policy change,” said Cheryl Naedele, Bob’s wife. “Ensuring no heart recipient will ever have to suffer the ravages of Chagas has been our passion since Bob’s passing.”

Test results will not have to be provided to patients and their medical team before transplant. That means that patients potentially could find out after their transplant that they had received an infected organ — and not have a chance to weigh the risks of a worse outcome.

The Organ Procurement and Transplantation Network committee that drafted the proposal originally planned to require testing to be completed before a transplant. But “many commenters were concerned that the lack of availability of testing and time it takes to get test results could lead to” delays or wasted organs, spokesperson Anne Paschke said, so the committee removed the pre-transplant requirement.

Experts said that any testing requirement can still improve outcomes even if results arrive after a transplant because medical teams could begin treating an infection promptly, rather than discovering the disease after symptoms appear. Treatment for Chagas disease is available, but it’s not always successful in transplant recipients because their immune system needs to be suppressed so their body will not reject the new organ.

In Bob Naedele’s case, his diagnosis took weeks and came too late, after the parasite had invaded his nervous system and brain. He died seven months after what had initially appeared to be a successful transplant.

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