As denials pile up, NFL settlement ignores ‘critical’ tests

A neuropsychologist diagnosed Arrobio with dementia in 2017, his medical records show, and speculated the cause was chronic traumatic encephalopathy, or CTE, the brain disease linked to football. The devastating news came with some consolation: The NFL’s concussion settlement, years in the making, had finally taken effect, promising care and payments into the millions for former players suffering from dementia and CTE.

At his settlement evaluation, his medical records show, Arrobio didn’t know what season it was or what city he was in. But despite his obvious symptoms, he failed to qualify for money or league-funded treatment. Perhaps, a settlement neuropsychologist suggested, Arrobio was just dealing with a mood disorder related to his retirement.

Six months later, Arrobio died of heart failure at 73. An autopsy found CTE that had caused atrophy — tissue death so extensive that portions of his brain had shrunk, a telltale sign of most diseases that cause dementia. A routine brain MRI exam probably could have detected the atrophy, according to five experts in neuroscience. But the settlement’s evaluation didn’t include MRIs in 2017, nor does it today.

When the NFL agreed to settle lawsuits filed by thousands of former players alleging football left them with brain disease, the top lawyer for players promised a “state of the art” evaluation, paid for by the league, that would quickly connect players with care at the critical early stages of dementia, when treatment can help ease a patient’s suffering.

“It’s the best of the best,” Christopher Seeger, one of the nation’s leading class action attorneys, said in June 2017 at a meeting with former players.

But the settlement’s dementia evaluation was operating behind best practices the day it opened in 2017, a Washington Post investigation found. And the quality gap between the settlement’s evaluation and a state-of-the-art examination for dementia has only widened since, leaving thousands of former players with assessments that fall far short of the sophistication promised by their top lawyer.

“It’s shocking to me that that’s not part of their evaluation,” James Castle, a neurologist and assistant professor at Rush Medical College in Chicago, said of MRIs. “This is a critical test.”

The Post has spent more than a year investigating the settlement, reviewing thousands of pages of records relating to efforts by more than 100 former players to qualify for benefits and interviewing dozens of lawyers, doctors, former players and their families. In January, a Post report revealed how the settlement’s unique definition for dementia has saved the NFL hundreds of millions. The Post also documented administrative failures that left some players waiting years — and, in two cases, dying — before they could get paid.

In examining the settlement’s evaluation process, The Post identified two common brain imagining technologies — MRI and amyloid PET (positron emission tomography) — whose exclusion probably has saved the NFL tens of millions in medical costs alone, according to expert estimates.

Arrobio is one of three former players identified by The Post who failed to qualify for benefits despite having brain damage at death that experts believe could have been detected by routine brain scans.

Former New Orleans Saints and Philadelphia Eagles linebacker Vaughan Johnson failed to qualify in 2019, even though doctors outside the settlement had diagnosed him with dementia. When he died that December, an autopsy found CTE with atrophy — brain damage that experts said could have been detected via MRI.

Former Los Angeles Rams linebacker Howard Carson was 61 when he failed to qualify in 2018, even though cognitive tests showed severe memory impairment. He died two years later by suicide, and an autopsy found CTE and Alzheimer’s, which experts said probably could have been detected with an amyloid PET scan.

Seeger, whose firm has made $70 million from the settlement, declined an interview request for this story and declined to answer questions about specific cases. In response to written questions, he argued that using brain imaging scans common elsewhere in American medicine would make it more difficult for players to qualify because the scans don’t always detect signs of brain disease.

“We are constantly reviewing the latest medical science and evaluating how it can be used to bring greater benefits to more former players,” Seeger wrote.

The NFL declined to make any league officials available and referred questions to Brad Karp, the outside lawyer who handled the settlement. Karp, in response to written questions, wrote that while brain scans aren’t included in the NFL-funded evaluation, players can get them in later years as part of follow-up settlement evaluations, which they pay for. He, too, declined to answer questions about specific cases.

As for the more than 4,000 former players who have not yet gotten their league-funded settlement evaluation, Karp disputed the necessity of MRIs or other brain scans.

“CTE can only be diagnosed post-mortem,” Karp wrote. “Right now there is no known way to use MRI … or other brain imaging methods to definitively diagnose CTE.”

But while scans can’t definitively diagnose CTE, experts acknowledged, they can signal that a patient is suffering from a brain disease. Like most diseases that cause dementia, CTE — in its severe stages — causes atrophy visible via MRI and other brain imaging technology. As The Post previously reported, one of the most common reasons for denied dementia claims is that settlement review doctors blame symptoms on problems other than brain disease, such as depression or untreated sleep disorders.

“If the question you want to answer is ‘Is there a brain disease here?’ ... we are fully equipped to answer that today, and we’ve had that scientific capability for some time,” said Michael Alosco, a neuropsychologist and co-director of clinical research at Boston University’s CTE Center.

Defending the settlement, Seeger and Karp highlighted how much money it has paid out — nearly $1.3 billion to more than 1,700 former players and their families. But the settlement also has denied more than 1,300 claims, court records show, and has repeatedly drawn allegations of injustice, with other lawyers and players criticizing Seeger’s advocacy.

In its January report, The Post identified 14 former players who failed to qualify, only for their families to discover via autopsy that they had been suffering from CTE. Margit Arrobio contacted The Post after that story, making her husband the 15th. She expressed outrage at the NFL but also at the former players’ attorneys.

“I just feel that they manipulated this process to help save the NFL some money and they cut out a lot of guys who legitimately had damage and were suffering,” she said. “We feel betrayed.”

A breakthrough ignored

For most of the history of modern medicine, a diagnosis of many of the diseases that cause dementia was basically an educated guess. Doctors examined patients, administered cognitive tests and made diagnoses based on the pattern of symptoms and test results. The only true confirmation came at autopsy, when a coroner examined the brain.

As a result, these diagnoses were often wrong. Through the early 2010s, estimates of how often Alzheimer’s patients’ autopsies found a different disease ranged as high as 30 percent. And even higher rates of patients diagnosed with other brain diseases were found, at autopsy, actually to have had Alzheimer’s.

But in the 2010s, new technology vastly improved doctors’ ability to accurately diagnose brain diseases.

In 2012, the Food and Drug Administration approved the first type of amyloid PET imaging, which can show whether a patient’s brain has abnormally high levels of amyloid, a hallmark of Alzheimer’s. The scans increased the accuracy of Alzheimer’s diagnoses to more than 95 percent, studies found.

Then, in 2016 and 2017, the FDA approved two software tools that significantly enhanced the precision of a brain MRI. By then, the American Academy of Neurology had been recommending MRIs as part of dementia assessments for more than a decade, mostly to rule out tumors or other problems. But the new software helped doctors identify whether areas of patients’ brains were alarmingly small when compared with those of healthy people the same age.

Diseases that cause dementia damage and kill nerve cells in the brain, leading to atrophy. Different diseases cause different patterns of atrophy. Most of them, including CTE, afflict the hippocampus, which is heavily involved in memory.

The new MRI software proved particularly helpful in spotting early dementia, experts said, when symptoms can be similar to those of other health problems, such as depression, sleep disorders and vitamin deficiencies.

“It really makes a difference if I know that someone’s hippocampal volume is at the 10th percentile for their age,” said Thomas Wisniewski, a neurologist and director of NYU Langone Health’s memory-care center. “I view it as absolutely critical in helping me come up with a diagnosis.”

These advancements in brain imaging occurred at the same time the settlement was making its way through the courts. The lawsuits started in 2011; the settlement was finalized in 2015 and then, after years of appeals, went into effect in 2017, covering dementia and three brain diseases linked to football: Alzheimer’s, Parkinson’s and amyotrophic lateral sclerosis (ALS).

When Seeger described the settlement as he sold it to federal judges, the public and his clients in this time frame, he repeatedly emphasized its focus on early diagnosis of dementia. To do this, the settlement would use “state of the art diagnostic tools and tests,” he said in court in 2014.

In a meeting with former players three years later, Seeger touted the help this cutting-edge evaluation would provide to players with early signs of dementia.

“The key was to get to guys early, if they start showing problems early, to get them treated,” he said in June 2017.

NFL lawyer Karp, when discussing this evaluation in public, was more circumspect when describing its sophistication and the help it would provide to players with early signs of dementia.

“To the extent they have early ... impairment, under the program, they will receive treatment,” Karp said in court in 2014.

Under the settlement, the NFL agreed to pay for one dementia evaluation for every former player. Players who didn’t receive a diagnosis could pay for additional settlement evaluations, years later.

And the settlement, which would last for 65 years, included another benefit that would ensure its dementia evaluations kept pace with science.

At least once every 10 years, the sides agreed, NFL and player lawyers would discuss potential changes to all medical science aspects of the deal.

In court in 2014, Seeger told the judge that he and NFL lawyers would work even more diligently than the settlement required to monitor for “new diagnostic tools.”

“Even though the agreement says every 10 years,” Seeger said, “we’re going to work together all the time to keep an eye on this.”

But when the settlement went into effect in January 2017, it had failed to incorporate either of the new diagnostic tools developed in the previous five years.

Timothy Shepherd, a neuroradiologist and associate professor at NYU’s medical school, was among the experts who expressed incredulity that a purportedly state-of-the-art dementia evaluation would lack brain imaging scans, in 2017 or any year since.

“If you’re trying to find dementia in the last 10 or 15 years and you’re not using imaging, you’re not really trying that hard,” Shepherd said.

‘I’m losing it’

Chuck Arrobio’s NFL career was short enough that when news circulated that scientists had discovered an obscure disease called CTE in football players, his family hoped he would be spared.

In 1966, a knee injury ended his career as an offensive tackle for the Vikings after 11 games and sent him to dental school. In 1971, he opened a practice in Pasadena, Calif., where he worked for the next 45 years.

In his early 70s, Arrobio began to experience worrying memory problems and confusion. He retired in 2016, but his condition worsened. He became increasingly irritable and paranoid, and he experienced frightening hallucinations of intruders.

“I’m losing it,” Arrobio told his neurologist in January 2017, a medical report shows. The doctor referred him to a neuropsychologist for testing, which led to a dementia diagnosis. But he also ordered a CT (computerized tomography) scan — another brain imaging technology commonly used in dementia evaluations — which found atrophy. The neurologist prescribed Aricept, a medication that can help slow the progression of some dementia symptoms.

When Arrobio met with settlement doctors months later, wife Margit expected he would qualify for a payment — or at least be deemed to have what the settlement called “moderate cognitive impairment,” which would bring up to $35,000 in medical care from the NFL.

But Arrobio got neither. His cognitive test scores weren’t low enough to meet the settlement’s dementia definition, his reports show, nor were his symptoms severe enough. It’s unclear from the records whether the settlement doctors reviewed his CT scan results.

The settlement neuropsychologist diagnosed Arrobio with “adjustment disorder with depressed mood,” related to his retirement. Instead of medical treatment, she recommended he maintain his interest in oil painting.

“It didn’t make any sense,” Margit said of the results. “I was completely shocked.”

Six months later, Arrobio died of heart failure. An examination of his brain found Stage 3 CTE, with atrophy of the frontal and temporal lobes, areas responsible for memory, language and many other cognitive functions.

“Any MRI would have detected this,” said Daniel Daneshvar, the chief of brain injury rehabilitation at Mass General Brigham and an assistant professor at Harvard Medical School.

After she received the autopsy, Margit Arrobio asked her lawyers about a posthumous settlement claim. They informed her that, under the settlement, autopsy results were meaningless.

“We were led to believe that players like him, with dementia, would get covered, and I still don’t understand why he wasn’t,” Margit said in an interview. “I know some judge decided this was right, but it’s not right.”

‘Remarkable’ atrophy

Playing for the Saints from 1986 to 1993, Vaughan Johnson was a ferocious hitter and a member of the “Dome Patrol,” perhaps the best group of linebackers ever assembled. In 1992, all four linebackers made the Pro Bowl.

After football, Johnson returned to the rural North Carolina coastline where he had grown up and opened a concrete construction company.

The first signs of cognitive problems began in his late 40s, his wife, Shirley, later told doctors. By 2016, when Johnson was 54, he struggled with conversation and needed Shirley to manage his company’s finances.

That year, he and Shirley traveled to New Orleans for an evaluation at Tulane’s medical center as part of the NFL Trust, a health-care program funded by the NFL Players Association. Doctors there diagnosed him with dementia and prescribed Aricept. They administered MRIs that didn’t show atrophy but found signs of brain damage consistent with head trauma, Johnson’s medical records show.

When the settlement opened in 2017, Shirley applied for a dementia payment, sending Johnson’s medical records to BrownGreer, the law firm that deals with claims. The response letter arrived in September 2018: denied. Johnson didn’t meet the settlement’s definition of dementia, the notice explained, for reasons including that he was still driving and working. This is a common reason players diagnosed with dementia have seen claims denied, The Post has previously reported, because the settlement’s definition requires more severe symptoms than the standard used by doctors in America.

(While Seeger has said the definition was designed to be more difficult than the one used in American medicine and experts agree, the NFL continues to dispute this.)

Shirley wanted to appeal, but she had more pressing problems. Dementia was one of several health problems afflicting Johnson, including kidney disease and complications after a medical procedure that left him needing oxygen tanks to breathe.

Still, in July 2019, they tried again. The closest settlement doctors were at Duke University, three hours away. Shirley drove, pulling over every 45 minutes to replace Johnson’s oxygen tank.

The results came three months later: denied again. Johnson had failed validity measures, tests designed to detect whether a patient is failing to give full effort. In neuropsychology, validity measures are controversial; some research has found dementia patients can fail them simply because of the severity of their condition. The settlement neuropsychologist, in his report, acknowledged the possibility that Johnson’s other health problems interfered with his ability to give full effort.

“At that point, he was in pretty rough shape and kind of over all of this,” Shirley said.

Johnson died in December 2019 of heart failure and kidney disease. An autopsy found Stage 3 CTE with atrophy. He was 57.

“For this to have happened in the brain of a 57-year-old is remarkable,” said Daneshvar, the Harvard assistant professor.

After Johnson died, Shirley appealed his denied settlement claim and sent in a raft of medical records, including the autopsy report.

The case went to a special master, a law professor appointed by the judge to determine contested claims. In his decision, written in January 2022, special master David Hoffman explained why Johnson’s dementia diagnosis in life and CTE finding at death didn’t qualify for a settlement payment.

“The available records demonstrate that Mr. Johnson experienced a prolonged and severe decline in his health following a prolific career as an NFL linebacker,” Hoffman wrote. “He suffered from many real world diagnoses, including numerous significant neurological conditions. There is documentation of progressive cognitive decline, and unrebutted evidence that he suffered from CTE at the time of his death. But those diagnoses, and the supporting medical records, do not fit into the Settlement’s prescribed boxes.”

“I don’t get it,” Shirley said in a recent interview. “Does the NFL not like how regular doctors diagnose dementia?”

‘Some kind of help’

When Seeger touted the importance of early diagnosis, he was right. While there is no cure for dementia, research has shown that the earlier the diagnosis, the more likely treatment can help patients manage symptoms and live independently longer.

That is why it struck some experts as unusual that the settlement’s free evaluation has never included an amyloid PET, which can detect signs of Alzheimer’s years before some patients show symptoms.

An amyloid PET scan can be expensive — as much as $5,000 — but the FDA approved it before the settlement was even written. The Department of Veterans Affairs began offering the scan to veterans, free of charge, in 2013.

Seeger referred The Post to an information sheet distributed by the Alzheimer’s Association stating that it is inappropriate to use the scan “for non-medical reasons, such as insurance, legal or employment decisions.” An Alzheimer’s Association expert told The Post that the statement was intended to prevent the use of amyloid PET to determine if someone is mentally competent in a court case, not to exclude it from an evaluation that might connect a patient with treatment.

The NFL’s lawyer, Karp, offered a different rationale. Though the settlement does cover Alzheimer’s, the league-funded evaluation process only screens for dementia, Karp explained. Experts expressed confusion about this argument to The Post, noting that Alzheimer’s is, by far, the most common cause of dementia.

An amyloid PET scan isn’t necessary for a doctor to diagnose a patient with dementia, these experts agreed, but the scan has been considered a state-of-the-art test for the most common cause of dementia for more than a decade.

“While it’s absolutely true you don’t need it to diagnose someone with dementia, not doing it makes it more likely you’ll miss some cases of dementia due to Alzheimer’s,” said Daneshvar, the Harvard assistant professor.

Meanwhile, the family of Hueland Howard Hale, who played under the name Howard Carson to honor his stepfather, thinks the lack of imaging in his evaluation may have had grave consequences.

A linebacker with the Rams in the early 1980s, Hale began expressing concern about his cognition in his late 50s, wondering aloud whether he was developing CTE. He started getting lost on routine drives and found himself needing to write daily errands down on sticky notes — “groceries” or “call doctor.” He also became increasingly reclusive and paranoid, erupting in outbursts of anger at his wife, Cheryl.

“I didn’t understand it,” Cheryl said in a phone interview. “It was like he was coming apart.”

When Hale went through his settlement evaluation in 2018, his medical records show, his cognitive test scores were so low that the neurologist expressed concern that he might be suffering from a memory disorder. But Hale’s scores weren’t low enough for the settlement, so he didn’t qualify for anything.

“I thought maybe he was making it all up,” Cheryl said of her husband.

In January 2021, Hale attacked his wife, grabbed her by the throat and dragged her into a bedroom, where he threatened to kill her and himself before she calmed him down. Cheryl left him the next day.

In more than 40 years of marriage, Cheryl said, Howard had never assaulted her.

“Nothing even close to that,” she said. “It was like a switch flipped, and he lost his mind.”

Two weeks later, he died by suicide at 63.

The autopsy proved Hale’s fears correct: CTE, Stage 3.

Because he went through his settlement evaluation more than two years before his death, experts said, it is difficult to know whether an MRI would have detected signs of CTE. Hale also had Alzheimer’s, however. And experts said an amyloid PET in 2018 could have produced evidence during Hale’s settlement evaluation that he was actually suffering from a brain disease.

“If we had gotten some kind of treatment program, some kind of help, that would have been huge,” said Hale’s daughter, Jessica Hale Allen. “He was suffering alone.”

Before Howard died, he called his wife one last time and left a voicemail. She can’t bring herself to delete it. In it, he apologized for attacking her.

“It wasn’t me. I know it wasn’t me, Cheryl. And you know it wasn’t me,” he said.

Before he hung up, he made one request.

“Make sure that you tell them to preserve my brain, Cheryl,” Howard said. “Because I know, for a fact, I have CTE. There’s no other thing to explain what the f--- I’ve been going through. I love you.”

The Yale way

It is well within the resources of the NFL, which according to media reports generates an estimated $20 billion or more in annual revenue, to build a “state of the art” program like the one Seeger promised. The experience of another former NFL player, recently diagnosed with Alzheimer’s, shows how truly cutting-edge dementia evaluations work in 2024.

The patient and his wife agreed to share their medical records with The Post on the condition of anonymity because they haven’t discussed the diagnosis with relatives and friends.

A wide receiver who played five seasons in the 1970s, this player had only minor memory problems when he went through his settlement evaluation in 2018 and failed to qualify for benefits. By 2021, though, his memory problems worsened, and he also started struggling to express himself in conversation. He and his wife considered a second settlement evaluation, which they would have had to pay for, costing as much as $5,000. Instead, they decided to seek treatment on their own.

“I’ve got pretty good health insurance because I was a teacher,” the player’s wife explained.

A doctor referred him to the memory clinic at the Yale School of Medicine in New Haven, Conn. Doctors promptly ordered an MRI that showed his hippocampus falling in the 18th percentile, by size, compared with those of healthy men his age.

After a neuropsychologist administered cognitive tests, Yale doctors diagnosed the player with mild cognitive impairment, often a precursor to dementia. They started him on donepezil, a generic name for dementia medication Aricept.

Then in September 2022, doctors ordered a second MRI, which found his hippocampus had dropped to the fifth percentile. This past April, the doctors had the player undergo an amyloid PET, which came back positive, leading to an Alzheimer’s diagnosis. The Yale doctors recently started the player on lecanemab, an anti-amyloid drug the FDA approved last year.

The player’s treating doctor at Yale, in an interview, said he recommends three types of imaging for patients suspected of dementia: MRI, amyloid PET and FDG (fludeoxyglucose) PET, a scan that measures brain activity and also can help determine which disease is causing symptoms of dementia.

“These technologies provide a tremendous amount of clarity. … Having that accurate diagnosis can really be life-changing,” said neurologist Arman Fesharaki-Zadeh, medical director of the dementia and behavioral neurology program at the Yale School of Medicine.

These three scans cost $10,000 to $15,000 combined, according to experts. There are about 13,000 former NFL players registered under the settlement. Administering those three tests to all of those players once, based on expert estimates, could cost about $195 million — or about as much as CBS charged for 14 minutes of Super Bowl ads in February.

Speaking of their experiences at Yale, the player’s wife said she has had a recurring thought: “Why isn’t the NFL offering this?”