NFL retakes control of brain research as touted alliance ends

August 31, 2017, 11:12 AM

— -- LONDON -- Since announcing a $100 million commitment to concussion research last year, the NFL has funded just one study examining chronic traumatic encephalopathy, or CTE, the brain disease that has shaken pro football. But that study isn't focused on football players.

It's focused on jockeys.

The project, run out of a four-story brick building in northwest London, aims to find out why high concussion rates in horse racing don't translate into "deteriorating brain function in later life," a question that many scientists believe has little to do with football. The study is led by an Australian researcher who once described American coverage of CTE as "carry-on and hoo-hah" and a British doctor whose concussion presentations sometimes have included flippant jokes and video of tumbling jockeys set to slapstick music. At one presentation, the widow of a CTE victim, a former British soccer star, was so offended she stormed out of the room.

The jockey project is part of the NFL's latest effort to stake out a powerful role in research that holds the potential of its own undoing.

Last September, the NFL pledged $100 million, doubling down on its previous commitment as one of the largest funders of concussion research in the United States. The league and its advisers say the money will go toward the prevention, diagnosis and treatment of head injuries. But after years of donating to outside entities -- an approach that league officials said was designed to keep the research independent -- the NFL has taken the science in-house and under its control.

"I would view it just as if any giant corporation was doing internal research," said Stefan Duma, a concussion researcher who is the interim director for Virginia Tech's Institute for Critical Technology and Applied Science. "This is internal research that the NFL controls."

The NFL's "Play Smart, Play Safe" initiative was announced as the league came under heavy criticism for trying to influence a CTE study to be administered by the National Institutes of Health. The league made a $30 million "unrestricted gift" to the NIH in 2012, but the partnership blew up after the controversy and will end today with more than half of the money unused.

Among its goals, "Play Smart, Play Safe" aims to spend more than half of the $100 million to create a safer helmet as a means of reducing concussions. A similar NFL project failed more than a decade ago, and many scientists believe the focus on helmets avoids the primary issue: CTE. At the same time, the NFL has joined global sports organizations -- including the NHL and World Rugby -- in pushing back against mounting evidence that sports-related head trauma can lead to CTE, a disease associated with dementia, memory loss and depression.

The NFL declined to make any of its health officials available for comment. When declining one specific request, a league spokesman cited previous "unfair" treatment by ESPN's Outside the Lines. In the past, the league has said it is guided by player health and safety. Several NFL-affiliated researchers have suggested that scientists such as Boston University's Dr. Ann McKee and Robert Stern, aided by the media, have oversold their findings, sowing unwarranted hysteria over the risks of playing football and other contact sports. McKee, a neuropathologist, announced in July that out of the 111 brains of former NFL players she has examined, 110 had CTE.

The prevalence of CTE among former NFL players -- and the rate at which they develop the disease -- has not been established. Because McKee and other researchers rely on individual case studies, some experts, particularly those affiliated with the NFL and other sports organizations, say the underlying cause of CTE is still unknown and might be due to other factors, such as alcohol or steroids. As well, McKee acknowledges her data set is skewed, making it difficult to assess the true prevalence of the disease.

When "Play Smart, Play Safe" was announced last year, NFL commissioner Roger Goodell acknowledged "there is skepticism about our work in this area" and pledged that "both the process and the results" would be made public. Much of the NFL-sponsored research remains unclear, including whether any NFL money will be spent on studying CTE or other long-term neurodegenerative diseases in football players.

As part of the initiative, the league formed the NFL Scientific Advisory Board, a committee that will recommend how the NFL should spend $40 million it set aside for scientific research. Retired Gen. Peter W. Chiarelli, the chairman, said the board will receive research applications this fall. He said it was too early to specify the focus of that research but stressed the importance that it "provide something of use to the league and the players." Chiarelli said he believes it's imperative to develop methods for diagnosing concussions quickly and accurately to improve treatment. But he said he has received no guidance from the NFL that would prevent the board from recommending any study or research area, including one that focuses on CTE.

Chiarelli said he is convinced that the NFL is committed to addressing brain injuries.

"They're spending more money than anybody else," he said, adding that money is no substitute for a true collaboration that involves researchers, academic institutions and industry coming together to solve the myriad problems around traumatic brain injuries.

The NFL has not disclosed how much it has invested in the London jockey project, which is being conducted by a nonprofit organization called the International Concussion & Head Injury Research Foundation. The project studied jockeys for the first 12 months but has been expanded to include athletes from other impact sports, according to the ICHIRF website.

When the league announced "Play Smart, Play Safe," it touted the partnership under the headline "How Horse Racing Research May Help Make Football Safer." The foundation lists its sponsors as the NFL and Godolphin, a global horse racing syndicate. The ICHIRF's Scientific Committee includes NFL advisers, including Dr. Allen Sills, the league's chief medical officer, and Dr. Richard Ellenbogen, co-chairman of the NFL's Head, Neck and Spine Committee. The committee also includes one neuropathologist, Dr. Rudy Castellani, the director of the Center for Neuropathology at Western Michigan University and an expert witness for the NHL in a class-action lawsuit alleging the league hid the dangers of concussions and long-term issues. Castellani also has raised questions about the significance of McKee's findings.

One of the researchers leading the study, Dr. Michael Turner, said in a 2015 interview with Sky Sports: "What interested [the NFL] about our project is the fact that we have this cohort of jockeys, retired jockeys in their 50s, 60s and 70s who suffered a lot of concussions when they were younger and don't appear to have any long-term ill effects of it."

Several concussion researchers told Outside the Lines they were unaware of any notable studies examining the incidence of long-term brain issues in jockeys.

Asked about concerns that the NFL might try to use the results to argue the league doesn't have a brain injury problem, Turner said in the Sky Sports interview: "The research has to stand on its own, and the fact that we get some money from the NFL is not a big worry. They're not breathing down our neck. They are merely providing funds for a research project that is of interest to them, as I suspect it is to a number of different organizations."

Turner declined to be interviewed by Outside the Lines for this story.

The Injured Jockeys Fund, a UK-based organization that provides support to hurt jockeys and their families, also is funding some of the ICHIRF research and providing subjects.

"This is a peer-reviewed research project," said Brough Scott, an ICHIRF board member who was a successful jockey and is the chairman of the board of trustees of the IJF. "We don't know what will turn up. If it turns up something that is very serious, we'll have to face up to it."

Several concussion experts reached by Outside the Lines doubted that equestrian sports were an appropriate vehicle to draw conclusions about long-term mental illness in football players. Comparing jockeys with NFL players is like "comparing apples and pears; you're talking about completely different population groups, completely different physiologies," said Angus Hunter, an exercise physiologist and concussion researcher at the University of Stirling in Scotland whose recent study with neuropsychologist Magdalena Ietswaart suggested repetitive blows from heading a soccer ball can lead to notable changes in brain function.

"With a jockey on a horse, if he comes off, there's a high chance of getting a concussion, but he's not impacting the brain hundreds of times in a race," said Dr. Willie Stewart, a neuropathologist at Queen Elizabeth University Hospital. "If you have a rugby player, perhaps there's a lower instance of concussion, but there's a difference in brain impacts that are causing the repetitive subconcussive insults hundreds, maybe thousands of times a season."

Stewart has become a leading figure overseas in CTE research. He worked with McKee and several other neuropathologists on a $12 million NIH study -- funded by the NFL through the NIH -- that defined the pathology of the disease and noted that "thus far, this pathology has only been found in individuals exposed to brain trauma, typically multiple episodes."

During a 2013 concussion conference in England, after a Stewart presentation, Turner jokingly described Stewart as the "Attila the Hun of Concussion," according to several people who attended the event.

Turner is the ICHIRF's medical director and formerly served as chief medical officer for the British Racing Authority. He has raised doubts about the connection between head trauma and CTE at a time when research continues to mount connecting the two.

"When you look at the CTE research, you find that actually a lot of the people who they have seen don't have CTE on their brain, and that normal people who've never had a concussion, and have stacked shelves in a supermarket all their lives, do have CTE," Turner said in a 2016 interview with Neurology Central, a website that provides content related to neuroscience. "So we don't really understand the relationship between CTE and concussion."

Dr. Daniel Perl, a leading neuropathologist and a professor at the Uniformed Services University of the Health Sciences, said Turner's view is inaccurate.

"The overwhelming majority of cases of CTE have been in the context of multiple trauma," Perl said.

Turner has sometimes added humor to his concussion presentations, according to people who have attended his sessions. During several presentations, Turner has played a highlight reel of jockeys falling off horses, set to a soundtrack of Benny Hill-like music, according to people who have seen the video.

To researchers accustomed to lengthy and often turgid scientific analysis, the presentations can be lively and refreshing. But many people say they have been offended by Turner's speeches. One is Dawn Astle, the daughter of former British soccer great Jeff Astle. Known as "The King," Astle's father starred in the 1960s and 1970s for West Bromwich Albion and played for England in the 1970 World Cup. He died at 59 in 2002 from a neurodegenerative disease that left him unrecognizable to family and friends.

During his playing career, Astle was known for his brilliant ability to propel the ball with his head. Stewart later diagnosed Astle as the first soccer player to have CTE.

Astle's daughter is a former narcotics investigator and has become an advocate for pushing research of CTE in soccer players and for the families of former players. She encountered Turner during a 2016 concussion conference at Twickenham in suburban London but said she left his presentation early based on what she saw.

"You can be a jokester and an entertainer, but not when you're talking about people's lives," she said. "I just felt like he was trivializing it and he was laughing."

Astle said she finds it hard to believe that Turner is in charge of a project to investigate CTE in sports.

"I wouldn't let him anywhere near that," she said. "No way, never in a million years. That's probably why [the NFL] has chosen him, to discredit everybody and say, 'Oh, it doesn't exist.'"

Turner's primary co-researcher with the ICHIRF has expressed doubts about CTE.

"Just think for a moment: If the [CTE] story is true, and it's related to the jarring or constant hits, we should see an epidemic of jockeys with problems, and we don't," Paul McCrory, the chairman of the ICHIRF's Scientific Committee, said during a presentation last year titled, "The Concussion 'Crisis': Media Myths and Medicine." "That's a clue that the CTE story really has a few questions that we don't understand yet."

McCrory, an associate professor at the Florey Institute of Neuroscience & Mental Health in Australia who has been a consultant to at least 10 sports organizations, including the International Olympic Committee and FIFA, declined through an ICHIRF spokesman to be interviewed for this story. But in papers and public presentations, he has questioned whether CTE is a real problem. He is an expert witness for the NHL in its concussion case.

"It's fair to say there is increasing skepticism around the world as to whether this condition actually exists or not, and that might seem very strange and provocative to say, because if you listen to the media, you get a very different story," McCrory said at a 2013 FIFA conference, according to audio aired on Background Briefing, an Australian public affairs program. "The media will tell you that it's a conspiracy, that every hit causes brain damage. None of that's true."

During a 2016 presentation, McCrory claimed that 20 percent of McKee's subjects had "no actual pathology," and he suggested that what she calls CTE in many cases might be another disease, such as Alzheimer's. In the same presentation, after noting that four subjects reportedly suffered from headaches, McCrory told his audience: "Well, I get a headache, maybe I've got CTE." He also cited a study that he said showed NFL players were 60 percent less likely to commit suicide than the general population and said, "So you could argue that playing NFL football actually protects you from mental health issues."

In explaining why McKee and others could be wrong about CTE, McCrory talked about how tau, the protein that causes CTE by strangling neurons in a definable pattern, is simply "part of the aging process" and present in all brains.

"Oh, my God, that's just ludicrous and misleading. It's embarrassing that a neurologist would say that," said Steven DeKosky, the deputy director of the McKnight Brain Institute at the University of Florida and one of the world's leading Alzheimer's experts, when McCrory's statement was read to him.

CTE is different from Alzheimer's and other diseases, with a distinctly identifiable pattern of tau, DeKosky said. Dismissing the disease by claiming that this pathological form and location of tau is part of normal aging is "like saying if you have a nose with two nostrils you must be a serial killer, because all serial killers have two nostrils. That's a facile comment about tau, but absolutely wrong."

McKee, of Boston University, said the campaign to raise doubts about CTE is "getting more brutal. It's getting more personal."

The NHL went to court in 2015 to try to obtain McKee's records, including autopsy photos, a demand that "threatens the foundation on which science thrives," McKee wrote in response. In one filing, the NHL compared McKee's work to that of a widely discredited British scientist who linked autism to vaccines.

An April "consensus statement" signed by researchers affiliated with more than a dozen sports organizations -- including eight with the NFL, plus Turner and McCrory -- called the connection between sports-related head trauma and CTE "unknown."?In March 2016, Jeff Miller, the NFL's top health and safety officer, acknowledged a link between head trauma and CTE -- the first time a senior NFL official conceded the connection. But since then, the league has seemed to suggest the relationship is still unclear.

"I don't understand how [sports organizations] could let certain potential conflicts get in the way of their view of things that are relatively straightforward to the people who truly understand this type of disease," said Boston University's Stern, who asserts that the link between head trauma and CTE is "incredibly clear."

The NFL-NIH partnership blew up after the NIH selected a group led by Stern to run a $16 million CTE study that was to be funded by the league.

So far, the NFL has announced just two projects from its $100 million "Play Smart, Play Safe" campaign, totaling $210,000. "It's going to take 500 years to distribute this money" at this rate, said one concussion researcher, who requested anonymity in the hopes of still receiving funding from the league.

Much of the pledged money -- $60 million -- is being spent on an "engineering road map" that encourages technological innovation to reduce head trauma.

The NFL believes that building better helmets -- and making the technology available to the public -- will reduce concussions. The idea is not new: The league embarked on a similar strategy in 1994, conducting internal research with the goal of creating a concussion-resistant super helmet. Back then, Dr. Robert Cantu, a renowned concussion expert, warned that the NFL's helmet strategy was naive. Today, he believes focusing on helmets remains misguided.

"The majority of that $100 million -- $60 million -- is going to technology, and 'technology' is a nice word to say 'better helmet,'" said Cantu, a clinical professor of neurosurgery at Boston University who has studied concussions for four decades and is a consultant with the NFL. "They're hoping they can come up with a better helmet that will largely make the problem go away. Helmets can obviously make it better, but no, realistically, it's the violent shaking of the brain, the rapid movement of the head. And the masses involved of individuals colliding with their heads and other body parts is just too great. They could probably get it better, but I don't think the helmet will ever solve the issue."

Jeff Crandall, a highly regarded researcher who is the director of the Center for Applied Biomechanics at University of Virginia and the principal scientist at Biocore, a Charlottesville firm, is overseeing the NFL's latest helmet project. The league declined to make Crandall available. During a meeting launching the "engineering road map" last year, Joel Stitzel, chair of the Department of Biomedical Engineering at Wake Forest Baptist Medical Center, said his group suggested making the study of so-called "subconcussive impacts" a potential research priority for the NFL.

"I said, 'We feel like it's important to study long-term impacts: What are the long-term consequences of subconcussive impacts'" on the brain, Stitzel recalled in an interview. "And the answer was: 'That's not in the scope of what we are trying to evaluate.'"

Stitzel praised Crandall as an excellent researcher but said he believes there are limits to what the NFL-funded project can accomplish. "I feel like there's diminishing returns on helmets," he said.

Some scientists wonder whether the NFL is skirting the larger issue -- CTE and other long-term brain issues -- by focusing most of its resources on helmets. In this way, they said, the league can keep debate focused around concussions instead of repetitive head trauma, which McKee and many others believe is the primary cause of CTE.

As part of its $100 million pledge, the NFL committed $40 million to scientific research. Chiarelli, the chairman of the Scientific Advisory Board, said in an interview that his committee will evaluate proposals this fall and make recommendations to the NFL. Chiarelli said the advisory board was thinking big to maximize the impact of the research: "I think it's fair to say we want to avoid funding a whole bunch of science fair projects."

Chiarelli, after retiring as vice chief of staff of the U.S. Army, became CEO of One Mind, a Seattle-based nonprofit research organization, to help find solutions to an epidemic of traumatic brain injuries that he first saw in the military. Chiarelli said the NFL research will provide benefits not only for football but also for veterans and the 2.8 million people who, according to the Centers for Disease Control, report to emergency rooms with concussion symptoms each year.

Chiarelli said the advisory board will make its recommendations independently, but the NFL will have the final say.

"What we're going to do is make recommendations," he said. "They're going to decide how to spend their money."