League of Denial

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League of Denial Page 31

by Mark Fainaru-Wada


  However, by that point, there was too much bad blood between the groups. No one with the Brain Injury Research Institute trusted Nowinski. When Omalu e-mailed Fitzsimmons and Bailes to ask what they thought about Nowinski’s proposal, Fitzsimmons wrote: “I suggest we do our thing & just disregard Chris.” Bailes quickly agreed. The group moved ahead alone, without informing Nowinski. Omalu, who had set up a small lab in his Lodi garage, worked feverishly to make a diagnosis before his rivals. “I hope we can know the results before the Boston group. ,” Omalu wrote in an e-mail to his colleagues. In another e-mail, he suggested that the Brain Injury Research Institute “may have to plan on how to optimize the utility of the case and possibly announce it before the Boston group. ”

  On July 1, six weeks after McHale’s death, Omalu sent an e-mail to his colleagues with the subject line “Thomas McHale, NEWS ALERT!!!!!!!!!!!!!!!!!”

  “THOMAS MCHALE IS POSITIVE FOR CTE,” he wrote.

  “Please let us have a phone conference ASAP!! We have to announce this before the Boston group. We also need to inform the family.… Congratulations!!”

  Bailes contacted Lisa McHale’s father, David D’Alessandro, a surgeon who had become the point person for the family. He explained the significance of the results. Omalu followed up with his own call to D’Alessandro. But McHale’s family was reticent about going public. “Lisa is still struggling with the diagnosis and it is my understanding that Lisa may be afraid of losing her benefits and rapport with the NFL and probably does not want to upset the NFL,” Omalu wrote to his colleagues. (Lisa McHale said she never spoke to Omalu, and she didn’t recall expressing to her father any fears about losing benefits or upsetting the league.) Omalu mailed her a copy of his report. Lisa was devastated. She hadn’t expected brain damage. Her husband had had no history of concussions. She had thought his brain would be valuable as a “control,” a healthy specimen to measure against diseased brains. In fact, McHale was sick, his brain riddled with CTE.

  Bailes suggested giving the family time to digest the diagnosis. Meanwhile, Nowinski, believing he had an agreement to make a joint announcement, was trying to contact Omalu. McKee had completed her own analysis and had also found CTE. But Omalu wouldn’t return calls or e-mails from Cantu or Nowinski. Finally, Nowinski contacted Lisa McHale, apologizing for the delay.

  “Sorry, but we’re having trouble getting in touch with the other guys,” he said.

  “Oh, they called me two or three months ago,” Lisa said.

  “Really?” said a surprised Nowinski. “Did they tell you the results?”

  “Yes, they said he was positive for CTE,” she said.

  “At that point, I said, ‘All right, fine, all bets are off,’ ” said Nowinski. “They broke the agreement.” Among other things, Nowinski thought the Omalu Group had created a potential disaster if McKee had come up with a different conclusion than Omalu had. “If we didn’t find it, it would be very confusing,” he said. “And they wouldn’t return our frickin’ calls. I mean, what can we do?”

  Nowinski told Lisa McHale that he believed it was important to go public with the results. Lisa, whatever reticence she may have expressed previously, agreed.

  The plan Nowinski developed would put on full display his gifts as an activist. He proceeded to choreograph a piece of guerrilla theater on the NFL’s biggest stage. He persuaded the McHale family not only to come forward but to make the announcement during a press conference the week before Super Bowl XLIII in Tampa, where McHale had spent most of his playing career.

  In addition to Lisa McHale, Nowinski brought in the entire team for the announcement: McKee, Cantu, even Ted Johnson, the former Patriots linebacker. And, of course, Nowinski himself. The press conference was held at a Tampa Marriott. The turnout said a lot about the level of public interest at the time. Earlier that day, more than 4,000 people had attended the Super Bowl’s annual Media Day. Less than two dozen showed up to hear that another dead football player had brain damage. But Schwarz was there for the Times, as was a reporter for the Associated Press, ensuring that the news hit the wires. A press release announced: “Leading medical experts at the Center for the Study of Traumatic Encephalopathy (CSTE) at Boston University School of Medicine (BUSM) reported today that nine-year NFL veteran, former Tampa Bay Buccaneer Tom McHale was suffering from chronic traumatic encephalopathy (CTE), a degenerative brain disease caused by head trauma, when he died in 2008 at the age of 45.”

  McHale was the sixth former NFL player to be diagnosed with CTE.

  There was no mention that Omalu also had studied McHale’s brain and reached the same conclusion. Omalu said he learned of BU’s announcement on TV. Nowinski and the Boston Group had taken control of the issue and soon would be recognized as the leading authority on football-related brain damage. Omalu and his colleagues were destined to become an afterthought.

  The SLI press release also noted that the group had discovered “early evidence of CTE in the youngest case to date, a recently deceased 18-year-old boy who suffered multiple concussions in high school football.”

  “This should be a wake-up call, especially to parents, coaches, and league administrators,” said Nowinski. “We’re exposing more than 1 million kids to early-onset brain damage, and we don’t know yet how to prevent it.”

  Asked why the NFL had been so lax, Nowinski turned lawyerly: “I think it’s because this is considered an on-the-job injury and it’s a huge liability.” He said he was in Tampa to recruit more players to donate their brains.

  “I find these results to be not only incredibly significant but profoundly disturbing,” said Lisa McHale, who would go on to sit on the Sports Legacy Institute’s Family Advisory Board and serve as SLI’s director of family relations. “We don’t want to destroy the game. We want to make it safer.” Even so, she said she was questioning whether she would let her sons, then 9 and 11, continue to play football.

  But of all the people who spoke that day, none was more powerful than Ann McKee. In many ways, it was her coming-out party as a spokeswoman for the disease. She was a natural: thoughtful, reasoned, believable. She made it seem perfectly natural that on the eve of the Super Bowl, a neuropathologist was standing in a conference room showing slides of a diseased brain to a bunch of sportswriters. McKee pointed out the clumps of tau, the brown splotches that had eaten away at McHale’s identity. This was not the normal brain of a 45-year-old man, McKee explained. It looked like the brain of a 72-year-old former boxer. McKee said she had been looking at brains for more than two decades and that what had happened to Tom McHale was not at all normal.

  “I have never seen this disease in the general population, only in these athletes,” McKee said. “It’s a crisis, and anyone who doesn’t recognize the severity of the problem is in tremendous denial.”

  Not long afterward, McKee’s phone rang. It was the NFL calling.

  14

  BIG FOOTBALL

  McKee would remember exactly where she was and what she was doing when she listened to Ira Casson’s voice mail. It was that kind of call. She was taking part in a conference at the VA, and when she came out of a session, Casson had left her a message. “I was like, ‘Oh, my God, what does Ira Casson want?’ ” McKee had never met Dr. No. She hadn’t seen his virtuoso performance on HBO. She hadn’t heard how he had mocked Bailes at the NFL Concussion Summit. And she had no idea that Casson, along with Pellman and Viano, had tried to get Omalu’s work killed. But she had heard enough to be wary. “I knew he wasn’t a friend,” she said.

  McKee returned the call nervously. Casson was pleasant and said the members of the NFL’s Mild Traumatic Brain Injury Committee wanted to invite her to New York to present her work. They wanted to view the cases personally. McKee, though intimidated, welcomed the idea; she believed in the work, she knew it mattered, and she loved football. She hoped to convince the NFL that CTE was something it should pay attention to.

  As they set a date for the meeting, McKee decided she “needed a littl
e friendly accompaniment.” She asked if Nowinski could attend, but the NFL refused. “Fine, I’m not coming,” she said. The league relented, though it was suggested that Nowinski not speak during the meeting. McKee also decided to invite another expert in neurodegenerative disease, Daniel Perl, the director of neuropathology at the Mount Sinai School of Medicine and a consultant to BU’s Alzheimer’s Center. Perl was a heavyweight; among other things, he was the leading expert on a mysterious brain disorder found only on Guam. He had been fascinated by McKee’s CTE cases. The disease clearly wasn’t Alzheimer’s, and the sheer amount of tau was stunning. Perl found he didn’t need a microscope to see it: He could hold up some of the slides to the light and tell the brains were severely damaged.

  On May 19, 2009, McKee, Perl, and Nowinski got together for breakfast in Manhattan before the meeting, not far from the NFL’s Park Avenue offices. McKee was nervous but excited. She wasn’t thinking about the future of football or even how the sport might need to change. She had important scientific information to pass along, and she hoped the NFL would take her seriously. Perl was expecting a straightforward academic presentation, like the hundreds he had participated in over the years, the audience respectful and curious.

  “I didn’t appreciate the political implications, okay?” he later said dryly. “That’s the best way to describe it.”

  As they entered the lobby of NFL headquarters, McKee found herself in awe. It was cheesehead heaven. After being cleared through security, McKee, Perl, and Nowinski rode the elevator up to NFL Central, the inner sanctum, where America’s richest and most popular sport was run. McKee saw the gleaming Lombardi Trophy, given to the winner of the Super Bowl; a trove of Green Bay Packers memorabilia; the legendary Jim Brown’s old jersey. There was a waiting room with lined green turf that looked like it had been ripped from a stadium floor. There was no mistaking where they were. Even Perl, a casual fan, was impressed.

  The trio was ushered into a huge board room with a lacquered table surrounded by plush chairs. Perl thought it was the fanciest conference room he had ever seen. There was high-tech equipment suitable for any type of presentation. As some two dozen participants took their seats, McKee noticed that she was one of just two women in the room; the other turned out to be an NFL lawyer. Along with the MTBI committee, there were a few other invited guests, including Peter Davies, the tau expert who to the league’s chagrin had validated Omalu’s work; John Mann, a Columbia University neuroscientist and psychiatrist who specialized in suicide research; and Colonel Michael Jaffee, the national director of the Defense and Veterans Brain Injury Center, which was seeking to collaborate with the NFL. One of the lawyers present specialized in class-action litigation, the visitors later learned. Nowinski believed the lawyers were present “to figure out what the researchers had and what to be prepared for down the road” in the event of a lawsuit. “They were clearly thinking about it already,” he said.

  McKee had prepared a PowerPoint presentation, but she also brought along a box of lantern slides with 4-inch by 5-inch slivers of brain the doctors could hold up to the light. She started with those, passing around the brains, and it immediately became clear that this was not going to be the academic discussion she and Perl had anticipated. Members of the MTBI committee seized on the absence of visible bruising to question how football-related head trauma could have caused the disease. If there was no contusion, there was no trauma. Of course, that was the point: Almost all the brains, from Webster’s on, had looked normal from the outside. This wasn’t a disease caused by a single blow or even a few. The brain was deteriorating from the inside as a result of repetitive, consistent pounding.

  McKee turned to the slides. She pointed out the brown splotches representing neurofibrillary tangles of tau protein that had suffocated the cells. This always had been the most powerful evidence. The tangles were indisputable signs of disease, and there was little or no beta-amyloid, which meant it wasn’t Alzheimer’s. And these were relatively young men with one common trait: All had played football for years. To McKee and Perl, the experts, this suggested dementia pugilistica, the boxer’s disease, now found in football players. Members of the committee again challenged her. Some wanted to know why the tangles weren’t closer to the surface of the brain, where the trauma had occurred. It was a reasonable enough question, but it had an edge. To many in the room, Casson seemed especially combative. His questions were along the lines of “How can you possibly think that? How is that possible?”

  “Casson interrupted the most,” said Colonel Jaffee. “He was the most challenging and at times mocking. These were pretty compelling neuropathological findings, and so I guess to outright deny there could be a relationship, I didn’t think that was really making an honest assessment of the evidence.”

  It was turning into Chicago all over again. Only now it was two years later, two years in which the NFL supposedly had made major changes in the way it addressed concussions. Hank Feuer, the Colts’ physician and a charter member of the MTBI committee, said he was sitting directly across from McKee. He later said, “I honestly don’t think we were any different with her than we were with anybody else. If we, for some reason, came across as being disrespectful, then I would say that everybody else we interviewed over the 15 years must have felt the same way.” But as the meeting continued, the invited guests found themselves increasingly uncomfortable with the line of questioning. All had participated in sharp scientific debate. This was qualitatively different, they felt. McKee felt like it was more of an inquisition than a legitimate inquiry.

  Mann, the Columbia suicide expert, had never met McKee, but he found her research compelling. It was obvious to him that she had found a serious brain disease in these players. After she was finished, Mann presented his own research, at one point describing data that showed how people who had had mild head injuries as children or adolescents were at an increased risk for suicidal behavior. Mann sought to connect his results to the cases McKee had presented.

  Casson tossed up his hand and interrupted. “It would be impossible to link a disease like CTE to suicide,” he asserted.

  That wasn’t true, said Mann: “It’s not just possible, it’s entirely plausible based on what I’ve seen from Ann McKee.”

  At one point, it was suggested to McKee that really, wasn’t CTE just a “misdiagnosed case of frontotemporal dementia,” a disease of the brain’s frontal lobe? To which she replied: “Well, I was on the NIH committee that defined frontotemporal dementia’s diagnostic criteria, so, no.”

  Perl studied the room. He, McKee, and Davies were the only experts in tau and neurodegenerative disease. He came to believe that no one else at the table truly understood the science. Or wanted to understand it. Casson and his colleagues—Viano and Pellman in particular—were most focused on proving that the cause of whatever they were seeing was not football. Perl described it as a “kind of unsophisticated denial. Now, admittedly it’s not their field, okay? But we’re the experts. Between Ann and myself, you had at that point maybe 50 years cumulative of looking at brains day in and day out.” Perl did notice that McKee’s message seemed to be sinking in with some of the other team doctors, particularly those who didn’t have a background in the brain, such as the orthopedists and emergency room physicians.

  They weren’t saying anything, but what Perl saw on their faces said, “Holy shit!”

  McKee had experienced heated debate before. Scientists in the Alzheimer’s community weren’t shy about attacking their colleagues. But this was different, she thought. It was almost personal.

  “I felt that they were in a very serious state of denial,” she said. “I felt like they weren’t really listening. That’s honestly what I thought. That’s how it felt, like they had their heads in the sand. They didn’t want to see it, so they didn’t see it.”

  McKee also couldn’t help noticing the preponderance of testosterone in the room. She was surrounded by men. She already worked in a field dominated by men, and she was f
amiliar with the look they were throwing her way. It said to her: “Is that girl saying something? Could we get a doctor in here, please? Could we get someone in here who actually knows what they’re talking about?”

  Casson, Viano, and Pellman—the triumvirate that had run the NFL’s concussion committee for years—bombarded McKee and Perl with alternative theories: steroids, nutritional supplements, high blood pressure, diabetes. On and on they went until finally McKee threw up her hands.

  “You are delusional,” she told the NFL’s men.

  Jaffee, the military doctor, had a sense of déjà vu. He had faced similar denials from Pentagon doctors who still couldn’t accept the idea that concussive blasts in the field might contribute to mental health problems such as post-traumatic stress.

  “There were certainly questions unanswered: Why everyone who played doesn’t have this? What factors lead to it?” he said. “Those would be questions I have, as opposed to questioning if there is any relationship.”

  The two-hour meeting ended cordially, with McKee and the others receiving thanks from the MTBI committee but no promises for follow-up. As Mann prepared to leave, Casson told him how surprised he was that Mann had asserted that there was a relationship between head trauma and suicide. Mann couldn’t tell whether Casson was genuinely curious or dismissive. “My reaction was, if he believes it, they’ll be in touch pretty fast,” he said.

 

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