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‘Race-norming’ kept former NFL players from dementia diagnoses after multiple concussions. Their families want answers.

For Michelle Haselrig, widow of former Pittsburgh Steeler Carlton Haselrig, the moment she realized her husband’s race might have deprived him of money from the NFL concussion settlement came this summer, after a friend texted her a news story about something called “race-norming.”

For Laurie Dirden, wife of former Houston Oiler Johnnie Dirden, that moment came last month, she said, when a doctor told her that if her husband were White, he would’ve met the settlement’s definition for a dementia diagnosis, and a six-figure payment, last year.

And for the wife of a third Black former NFL player, who doesn’t want to be publicly identified with his medical condition, that moment came last fall, when she read the report from her husband’s doctor. It confirmed that if her husband were White, he would’ve qualified for a payment in 2019.

It has been more than a year since Black former players seeking payments from the landmark NFL concussion settlement first drew attention to the use of race-norming, a controversial practice in neuropsychology in which Black patients’ cognitive test scores are curved differently than White patients’ scores. Though a judge rejected the former players’ civil rights lawsuit, she sent attorneys for the players and the league into confidential, ongoing mediation to address concerns about race-norming.

The NFL publicly pledged in June to remove race-norming from the settlement. But the league and its lawyers have continued to defend the practice in public statements and court filings. Race-norming did not make it harder for Black players to qualify for payouts, the NFL has asserted. If any dementia claims were affected by race-norming, the NFL has said, they were only “a fraction” of the hundreds alleged by former players’ lawyers. Race-norming is not required under the settlement, the league has said, and any doctors who believe otherwise are wrong.

But a Washington Post review of hundreds of pages of confidential medical and legal records, provided by the families of these three former players, underscores how race-norming put Black players seeking settlement payouts at a disadvantage and illustrates how the practice could have easily affected the potential dementia claims of hundreds of former players, saving the NFL millions of dollars.

For Haselrig, who died suddenly last year at 54, The Post found that race-norming prevented him from qualifying for NFL-funded medical care and, potentially, a seven-figure payment in the final years of his life. For Dirden, 69, race-norming prevented him from even filing a claim for an NFL settlement payment last year, even though his neurologist had diagnosed him with dementia and started him on medication. For the third player, race-norming prevented a dementia diagnosis in 2019, his medical records show, and a potential $400,000 payment from the NFL.

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In response to requests from members of Congress and reporters for data on the racial breakdown of dementia payouts from the settlement, the NFL has claimed such figures don’t exist. Because settlement claim records are confidential, it’s impossible to determine through public court records how many dementia claims by Black former players have been denied, reduced or never filed because of race-norming. But publicly available figures suggest race-norming’s impact has been more far-reaching than the NFL has acknowledged.

Black players typically comprise 50 to 70 percent of the league in any given year, according to surveys and news reports. More than 1,000 former players have filed dementia claims that were later denied, court records show. Haselrig, Dirden and the third player are among nearly 5,000 former NFL players who have been evaluated by doctors in a network established by the settlement - and funded by the NFL - and walked away without a diagnosis.

Doctors working in the NFL-funded network felt they were required to race-norm scores, according to documents and interviews previously reported by The Post. A confidential guidebook directed doctors to use several tests, and score-curving systems, that require race-norming. And when some doctors attempted to diagnose Black former players with dementia without race-norming their scores, documents show, they repeatedly faced challenges from the law firm overseeing the claims process and the NFL.

The NFL referred questions and a request for comment for this story to the league’s lead lawyer on the settlement, Brad Karp, chairman of law firm Paul, Weiss. In an email to The Post, Karp declined to comment on the experiences of Haselrig, Dirden and the third player and again asserted race-norming didn’t discriminate against Black former players.

“Race norms are not being removed from the Settlement Program because they have been found to ‘affect the potential dementia claims’ of Black claimants,” Karp wrote. “Race norms are being eliminated because they have recently been called into question in many areas of medicine, including in the Settlement Program, and the NFL is committed to driving positive change, even ahead of the field of neuropsychology at large.”

Karp is right that the NFL’s race-norming controversy has prompted what several experts have acknowledged is a long-overdue discussion in neuropsychology about the practice. But in interviews with The Post, independent experts and doctors who have evaluated former players disputed the NFL’s position that race-norming did not make it more difficult for Black former players to qualify for settlement payments.

In the case of Dirden, his neurologist was so outraged that her diagnosis was overruled, she said in an interview, she quit the network of doctors evaluating players in the settlement.

“I just felt the patients were getting jerked around, rooked and cheated,” said Maureen Leehey, professor of neurology at University of Colorado. “It just wasn’t right.”

Chris Seeger, the lead lawyer for about 20,000 former players in the settlement, declined to comment for this story. In response to questions, he referred to public comments he has made, apologizing to Black former players for not acting sooner and vowing to have any case in which a Black player’s claim was affected by race-norming re-examined.

As another NFL season kicked off this month, the league again promoted its newfound commitment to social justice by stenciling “End Racism” in end zones and permitting players to put stickers with phrases such as “Black Lives Matter” on their helmets.

Michelle Haselrig takes a dim view of these efforts. In a recent interview in her home in Johnstown, Pa., she wondered why the NFL’s lawyers fought to keep race-norming part of the evaluation of dementia claims. Then she provided her own theory, after referencing the predominantly Black makeup of former players.

“There you go,” she said. “To save money.”

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Nearly six years after the first lawsuits were filed accusing the NFL of failing to protect its players from concussions, the settlement went into effect in January 2017.

The NFL admitted no liability, but it agreed to pay sums ranging from $25,000 to $5 million to any member of the class of more than 20,000 former players who developed one of several brain diseases.

To compensate players living with chronic traumatic encephalopathy (CTE), which can only be definitively diagnosed after death, experts hired by the NFL and lawyers for the players negotiated strict definitions for two dementia-related diagnoses: early dementia and moderate dementia. Players diagnosed with early dementia could earn payments as high as $1.5 million. A moderate dementia diagnosis paid as high as $3 million.

A third diagnosis - mild cognitive impairment - was negotiated for players considered at high risk of developing dementia. For these players, the NFL would pay for follow-up medical treatment, including expensive brain scans that can produce evidence of brain damage and disease.

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To get a diagnosis, players needed to meet with a neurologist, who would evaluate for physical signs and symptoms of dementia. They also needed to meet with a neuropsychologist, who would administer a series of cognitive tests. To issue a dementia diagnosis, the doctors needed to agree the player’s symptoms were significantly interfering with his day-to-day life and that his cognitive test scores were low enough to meet the settlement’s definitions for early and moderate dementia.

The NFL agreed to fund a network of neurologists and neuropsychologists across the country to evaluate players free of charge. In statements to The Post, the NFL’s Karp has argued that the settlement’s evaluation process was simply designed to duplicate what happens in regular clinical care when doctors look for possible brain disease.

“The parties had a singular goal in creating the Settlement Program: accurate diagnoses,” Karp wrote.

But according to experts interviewed by The Post, the settlement’s evaluation process differed from their regular diagnostic work in key areas.

The settlement placed inordinate weight on cognitive test scores, these experts said. To qualify for a dementia diagnosis, players needed to show their thinking ability had declined by taking 22 tests of cognitive ability and logging scores low enough to meet a strict rubric spelled out in the settlement. The swing of a few points on a few tests could mean the difference between a dementia diagnosis - and a multimillion-dollar payment - and no diagnosis at all.

In regular examinations, these scores are just one component of a broad evaluation and would never on their own disqualify a patient from a dementia diagnosis, said Leehey, the neurology professor.

“We never make a diagnosis - or decide not to make a diagnosis - based on a few test scores,” Leehey said. “That’s just one part of the picture.”

And by placing so much weight on test scores, the NFL concussion settlement guaranteed that race-norming could affect the potential claims of Black former players.

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In regular neuropsychological care, experts said, race-norming is optional, used to prevent the misdiagnosis of brain injury or disease. The practice dates to the late 1990s, when several peer-reviewed research papers found Black Americans performed worse on many tests of cognition than White Americans.

While race-norming is a common practice in neuropsychology, some experts have long noted its potential, in situations such as litigation, to result in the denial of benefits to Black people. In interviews with The Post, several neuropsychologists said they use race-based norms only selectively because they consider race-based data in some common test-curving software outdated or unreliable.

In June, when the NFL publicly agreed to remove race-norming from the settlement, the league portrayed the practice as unavoidable.

“Everyone agrees race-based norms should be replaced, but no off-the-shelf alternative exists,” league spokesman Brian McCarthy said.

Alternatives do exist, said several experts, including Charles Golden, a neuropsychologist and professor of psychology at Nova Southeastern University in Fort Lauderdale, Fla.

“You absolutely can score these tests without using racial norms,” Golden said. “You just ran into trouble (in the NFL concussion settlement) whenever you tried not to.”

Golden is one of four neuropsychologists who said in interviews with The Post that his dementia diagnoses of former players were challenged by either the law firm that oversees settlement payments or the NFL over a failure to race-norm. The other three neuropsychologists spoke on the condition of anonymity, given the confidentiality requirements of the settlement. The four neuropsychologists collectively have examined hundreds of former players.

“For me, it was very simple,” said Golden. “When we’re talking about qualifying somebody for a payment for difficulties they’re having . . . the criteria should be exactly the same for Black and White players.”

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In the history of Johnstown, a small city in the mountains east of Pittsburgh, there are few athletes who have accomplished more than Carlton Haselrig.

As a college wrestler at Division II University of Pittsburgh Johnstown, Haselrig won an unparalleled six NCAA championships - including three Division I titles, beating wrestlers from larger, more historically successful programs along the way. The NCAA later barred Division II wrestlers from competing in Division I tournaments, a policy change known as “the Haselrig rule.”

In 1989, the Steelers took a chance on Haselrig with a 12th-round draft pick, even though he hadn’t played football since high school. In 1991, Haselrig, known by his teammates as “Rig,” started all 16 games at right guard for the Steelers. In 1992, he made the Pro Bowl.

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A promising NFL career unraveled after five seasons, however, amid drunken driving arrests, stints in rehab and a cocaine problem. Haselrig would later tell his wife and children that he believed his struggles stemmed from 20 or more concussions he suffered in the NFL.

After his football career ended in 1995, Haselrig moved back to Johnstown and married Michelle, and they had five children together. After a brief attempt at a career in mixed martial arts, Haselrig started coaching football and wrestling at Greater Johnstown High, where a shrine commemorates his athletic achievements.

Michelle noticed her husband’s memory beginning to slip in his mid-40s, she said. At first, he struggled to remember the names of new acquaintances and details of recent conversations. Michelle grew concerned when he began repeatedly asking her at night how her day went.

In 2017, he met with doctors to be evaluated as part of the NFL settlement, describing how he struggled to memorize his football playbook and explain certain holds to his wrestlers. He had recently tried to do laundry, he told a doctor, only to realize he was loading clothes into the freezer. At night, he had started occasionally wetting the bed.

The neurologist and neuropsychologist agreed Haselrig’s symptoms merited a diagnosis of mild cognitive impairment, which meant he was at high risk of developing dementia and that the NFL would pay for follow-up treatment. His cognitive test scores were just shy of the settlement’s requirements, however, so no diagnosis was given.

The neurologist and neuropsychologist who examined Haselrig both declined to comment. Michelle Haselrig agreed to let The Post send her late husband’s cognitive test results to an independent neuropsychologist, to determine whether race-norming affected his eligibility for medical care or money from the NFL. It did, with dramatic results.

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According to Eric Watson, a clinical neuropsychologist at the Brain Injury Research Center of Mount Sinai, Haselrig’s scores were curved using Black race norms in 2017. When Watson recurved the same results, using White norms, Haselrig’s scores dropped across the board, falling into range for a diagnosis of moderate dementia under the settlement, worth a potential payment in the range of $600,000 to $1.2 million.

Even if his scores were curved as if he were White, Haselrig wouldn’t have instantly qualified for a dementia diagnosis and payment in 2017, because his doctors believed his physical symptoms fell short of the settlement’s definition for dementia. But he would’ve qualified for a mild cognitive impairment diagnosis, giving him access to NFL-funded follow-up medical care. The NFL’s lawyer, Karp, declined to comment on Haselrig’s or other specific cases.

Haselrig never consulted another neurologist. His memory worsened, and soon other health complications developed. Years of heavy drinking had taken their toll, and he developed cirrhosis of the liver. In July 2020, he collapsed on a staircase in his home and died several hours later.

Michelle said her husband would’ve taken advantage of NFL-funded medical care, had he qualified for it in 2017. And had she known his test scores met the settlement’s standard for dementia, she said, she would’ve insisted he consult other doctors and get a second opinion about his symptoms.

“This is devastating,” she said after being informed of race-norming’s impact on her husband’s scores. “My husband did not get what he deserved when he was alive . . . and he was every bit as intelligent as his White teammates. How is this legal?”

A journeyman wide receiver, Johnnie Dirden played for the Oilers, Kansas City Chiefs and Steelers between 1978 and 1981. He got most of his playing time - and suffered most of his concussions - on special teams, where he returned kickoffs and punts.

After retiring from football, Dirden settled in Denver, married Laurie and got a job as a salesman for a medical supplies company. Memory problems started about a decade ago, Laurie said, when Johnnie started occasionally visiting the same doctor twice in one day, forgetting the first visit.

As his short-term memory disappeared, Johnnie has kept his job thanks, in part, to understanding co-workers, Laurie said, and a series of coping mechanisms.

His bosses excuse him from training and meetings, Johnnie said, and assistants help him fill out reports. Several smartphone apps have proved vital, he said, including one that records all of his phone calls and another that helps him dictate text messages and emails.

“They’ve made so many concessions for him because they just like him,” Laurie Dirden said. “Johnnie just goes out there with a committed, caring attitude, and he brings the sales in. ... The doctors and nurses love him, and they love talking football.”

Johnnie Dirden first consulted doctors to see if he qualified for an NFL settlement payment in 2017. He came away without a diagnosis. In July of last year, after switching attorneys, Dirden scheduled another evaluation, with Leehey, the Colorado neurologist.

At their initial evaluation, Leehey administered the Montreal Cognitive Assessment, a dementia screening test of thinking ability. Dirden scored a 13 out of 30, in the range of where Alzheimer’s patients typically score. At a follow-up appointment, after interviewing Johnnie twice and reviewing medical records including an MRI, Leehey diagnosed him with dementia and prescribed him Donepezil, a drug that can slow cognitive deterioration.

“He was just so clearly dealing with dementia,” Leehey said. “There was no question about it.”

When Dirden went through a neuropsychological evaluation in November, however, his test results fell short of the settlement’s requirements.

The neuropsychologist who evaluated Dirden did not reply to multiple requests for comment. In her report, she included a series of comments about the impact on Dirden’s scores of the “specified procedures of the NFL Concussion Settlement,” including the use of race norms, which are also called “demographic corrections.”

“The demographic corrections in this case . . . limit the ability to assign levels of impairment” to Dirden’s scores, the neuropsychologist wrote.

Without a confirming diagnosis from the neuropsychologist, Dirden couldn’t file a claim.

“It made absolutely no sense to me,” Leehey said. “He clearly deserved a settlement payment.”

The Dirdens’ experience aligns with that of another Black former NFL player, who agreed to share his medical records with The Post on the condition he remain anonymous. In 2019, a neurologist expressed concern about the former player’s worsening memory symptoms. But the doctor didn’t make a diagnosis, in part, because of his test scores.

Last year, however, the neurologist ordered the former player’s scores curved again, this time as if he were White. The result: His scores qualified him for an early dementia diagnosis and, potentially, a $400,000 settlement payment.

In an interview, the former player’s wife said the failure to get a diagnosis two years ago had larger ramifications than just on their finances. Her husband blamed himself for his thinking difficulties and wondered if he was imagining them or if people thought he was exaggerating.

“You have people who are being told there’s nothing wrong with them when they know there’s something wrong,” she said. “That’s bigger, to me, than any settlement money.”

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The first public accusations that race-norming discriminated against Black players in the settlement came in a lawsuit in August 2020, filed by former players Najeh Davenport and Kevin Henry. In the lawsuit, both players alleged they had received dementia diagnoses that were later overturned because their neuropsychologists had failed to race-norm their scores.

Judge Anita Brody, who has overseen the concussion case, dismissed the lawsuit, calling it “a collateral attack” on the entire settlement. But in March, she also made the unusual decision to direct lawyers for the NFL and former players, as well as the lawyers for Davenport and Henry, into confidential mediation to “address the concerns” raised by the lawsuit.

In June, the NFL and Seeger, the lead lawyer for the players in the settlement, publicly pledged to remove race-norming from the evaluation of claims. Seeger, who had for months claimed he was aware of no evidence the practice had discriminated against Black former players, issued a public apology. The NFL has issued no such apology.

As the mediation between the league and ex-players continues, families of former players across the country are reviewing medical records and contacting lawyers to see if race-norming affected their loved ones’ claims.

The former player who didn’t want his name revealed filed a dementia claim in November, his wife said. They have yet to get a response from the law firm that oversees settlement payments, a delay their lawyer has told them is due to the race-norming mediation.

The Dirdens are also waiting to hear if Johnnie qualifies for a settlement payment. Leehey, Johnnie Dirden’s new neurologist, recently filed paperwork supporting his claim for a settlement payment from the NFL, even though his race-normed scores didn’t qualify. Johnnie is still taking medication for dementia, he said, and he believes it’s helping. He recently remembered the name of his dog, Lacey, for the first time in years.

Michelle Haselrig, meanwhile, is consulting attorneys.

After discussing her husband with a reporter a few weeks ago, Michelle led a short tour of Johnstown. First, she stopped by the bridge near their home that the city recently renamed after him. Then, over to the high school football stadium where his funeral was held last year. And then, over to Carlton’s grave.

The crowd at the football stadium exceeded 350 that day, Michelle recalled with pride. When the hearse carrying Carlton reached the graveyard, the funeral procession of cars behind it still stretched back to the stadium, two miles away.

For the first few months after Carlton’s death, Michelle said, it was too painful to visit his grave. But this summer, she began stopping by every few weeks. Sometimes she brings a lawn chair and reads to him; other times she just stays a few minutes to talk, giving him updates on their five children and four grandchildren. Recently, she told him about race-norming - and her discussions with lawyers.

“I told him I’m fighting for him, and his children, and his grandkids,” Michelle said. “And that I’m not going to stop until the NFL pays up.”

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