‘Concussion’: advocating for the truth about brain diseases

In this era of growing concern over sports injuries, increased prevalence of neurological diseases, and pioneering brain research, the just-released movie Concussion hits home.

With Will Smith starring as the Nigerian-born Dr. Bennet Omalu, a forensic pathologist in the Allegheny County, PA, coroner’s office who was the first to identify a debilitating brain disease in deceased former National Football League (NFL) players, Concussion reveals how powerful political and financial interests prioritize profit over health, trying to bend or even snuff out inconvenient scientific knowledge.

Concussion also shows how scientists and physicians must sometimes go beyond the lab – even risking their jobs – to advocate for the truth.

As a Huntington’s disease advocate also keenly interested in the condition studied by Dr. Omalu, chronic traumatic encephalopathy (CTE), I applaud how Concussion helps raise awareness about brain health.

Like HD-affected individuals, people with CTE can suffer from symptoms such as depression, wild mood swings, forgetfulness, irrationality, insomnia, dementia, and suicidal behavior.

Dr. Omalu’s fight to get out the word reminds me of the long struggle against ignorance, stigma, and denial faced by families confronting HD and other rare and neurological conditions.

‘Trauma chokes the brain’

I watched Concussion on December 27. It dramatically portrays Dr. Omalu’s discovery of CTE in the brain of Mike Webster after the former Pittsburgh Steeler star lineman died in 2002 at the 50, having struggled with behavioral issues, depression, and other cognitive difficulties.

At the end of his life, estranged from his family, Webster lived in a pickup truck. Suffering from severe insomnia, he would shock himself with a Taser gun in order to fall asleep.

Using data from the Webster autopsy, Dr. Omalu and other researchers published an article in the scientific journal Neurosurgery suggesting that the impact of Webster’s football career caused CTE.

Dr. Omalu then found CTE in two other dead players.

“Repetitive head trauma chokes the brain,” Dr. Omalu declares in Concussion.

Ignoring the evidence

“You’re going to war with a corporation that owns a day of the week,” warns Dr. Omalu’s boss, coroner Dr. Cyril Wecht, portrayed by Albert Brooks, in reference to the immense popularity of the NFL.

Betraying both ignorance and arrogance, the NFL tried to force Omalu to retract his research, something a scientific journal would do only in the case of plagiarism or falsification of data. Concussion depicts that ill-fated attempt and Omalu’s resultant indignation.

Unable to stop Omalu, the NFL, led by Commissioner Roger Goodell, then turned on its effective public relations machine.

As shown in the film, it also ignored Dr. Omalu, refusing to allow him to even enter the room at a league meeting held to discuss his findings. They were instead presented by Dr. Julian Bailes, a former Steelers team physician – played by Alec Baldwin – who had become convinced that football endangered players.

As Concussion depicts, Dr. Omalu and his wife were forced out of Pittsburgh. He took a job as the chief medical examiner in San Joaquin County, CA, but continued to press the issue of CTE.

You can watch the Concussion trailer in the video below.

Mounting statistics

Concussion, for all its painful drama, actually takes a relatively mild approach For example, it doesn’t show all of the toll football took on Webster’s body and mind.

Complementing Concussion, the award-winning Frontline documentary League of Denial: The NFL’s Concussion Crisis, shows photographs from the Webster autopsy and delves more deeply into the science and politics of CTE. It originally aired in 2013 and replayed this month in anticipation of Concussion.

Two League of Denial collaborators, ESPN journalists Mark Fainaru-Wada and Steve Fainaru, have described the issues of CTE and football head trauma as a “public health crisis.” 

As noted in League of Denial and other media reports, NFL doctors and officials have consistently tried to downplay the CTE evidence. Among their claims: the number of dead players examined was too small to qualify as scientific evidence, and some players endangered themselves with issues such as steroid abuse.

“You can’t go against the NFL,” says the real Dr. Omalu in League of Denial. “They’ll squash you.”

However, as Frontline revealed in an online report in September and in this month’s broadcast of its documentary, the statistics are now overwhelming: 87 of 91 NFL deceased players tested positive for CTE. That’s a rate of almost 96 percent. With semi-professional, college, and high school players included, the figure is 79 percent.

A young star retires

The League of Denial update highlighted the case of Chris Borland, a highly aggressive tackler for the San Francisco 49ers.

“I knew of CTE,” Borland said in an interview for the program. “I didn’t know what the acronym stood for. I started with Google searches. I started looking at things: what does this term mean? Where is the research done?”

Borland understands that as a player he was prone to both receiving and inflicting trauma-producing hits. “You understand on a certain level what you’re doing,” he said, “but you don’t know the science behind it.”

In March 2015 Borland spoke to Robert Stern, Ph.D., of the Boston University CTE Center.

The documentary update cuts to an interview with Stern explaining that knocking heads in pro football is the “equivalent of driving a car at 35 MPH into a brick wall, a 1,000 to 1,500 times per year.”

After that call, Borland immediately retired from football.

“The idea that just the basis of the game, repetitive hits, could bring on a cascade of issues later in life, it changed the game for me,” he explained.

Is football safe?

Borland’s decision shocked the sports world.

Goodell immediately began damage control.

“I think our game has never been more exciting,” he said in a TV interview replayed by Frontline. “It’s never been more competitive. And I don’t think it’s ever been safer.”

“It’s dishonest, and I don’t think it’s responsible, to say that the game is safer,” Borland countered in the Frontline report. “I think that’s just not true, and the players themselves on the field know. I mean, they’d scoff at that. That’s not accurate.”

Borland recalled that the NFL’s own actuaries estimated that 30 percent of the league’s veterans would develop brain damage.

“I really don’t watch football anymore,” he said.

Concussion safety advocate Chris Nowinski, a former Harvard University football player and professional wrestler, said of Borland’s retirement: “It really made me wonder: if every NFL player had the access to the information he has, would they make the same choice?”

You can watch a Frontline report on Borland in the video below.

Continued risks

A steady flow of other reports in 2015 further highlighted the risks of football.

In August, a research study underscored the growing concerns about the impact of youth football.

In November, lawyers for the thousands of former NFL players and families who were awarded a $1 billion payout from the league for cognitive difficulties from concussion-related injuries returned to court to request an appeal so that CTE can be covered in the settlement. A decision on the appeal is expected in early 2016.

Also in November, the family of Pro Football Hall of Famer Frank Gifford, who died in August, revealed that he suffered from CTE and had shown signs of cognitive debilitation.

That month, continued weaknesses in the NFL’s concussion policies became evident as several players suffered conditions but continued to play because they were diagnosed only after their games.

Refusing to back down

Contrary to Concussion’s and Dr. Omalu’s assertions that he discovered CTE, medical researchers have been investigating the disease since at least the 1940s.

At that time, they focused on the risks of boxing. It’s no surprise that doctors and researchers have now found the disease in football players.

The themes of Concussion are deeply familiar to neurological disease communities. In the Huntington’s community in particular, affected families, advocates, researchers, and drug developers witness both the majesty and delicateness of the brain on a daily basis. We seek badly needed treatments for an incurable disorder that disables people physically and cognitively, turning them into a mere shadow of themselves.

Although ignorance and denial might still lead some to view HD as some personality quirk – just as deniers of football trauma dismiss the link between head trauma and behavioral problems – the informed members of the HD community know that this medical condition can be explained by science.

Despite the campaign against him, Dr. Omalu refused to back down. He drove home how dangerous football can be. The film reminded me of my realization years ago that I could no longer watch football with a clear conscience. Now I rarely watch it at all.

Those affected by HD, Alzheimer’s, Parkinson’s, Lou Gehrig’s, traumatic brain injury, and the myriad of other neurological and rare diseases should also not back away from their commitment to advocacy. Dr. Omalu’s example gives us courage to keep fighting for a clearer understanding of these conditions, better care for those who suffer from them, and ultimately the development of effective treatments.

Click on the links below to read my previous reports about the concussion crisis.

"It's playoff time - and a reminder that brain health comes first"

"Junior Seau, Super Sunday, and our most important national resource"

"Finding America's passion: the NFL and Huntington's disease"

It’s playoff time – and a reminder that brain health comes first

During the winter holidays, many Americans celebrate our culture of competition by watching football – from state high school championships to college bowl games to the National Football League (NFL) series culminating in the Super Bowl.

However, recent news regarding head injuries has spurred the greatest concerns about player safety in the recent history of the game.

As I wrote last January on the eve of the 2013 Super Bowl, “the negative consequences of football on the brain have come under intense scrutiny.”

I noted that Junior Seau, the former San Diego Charger who had committed suicide in 2012, suffered from CTE (chronic traumatic encephalopathy), a brain disease produced by trauma to the head. According to Seau’s relatives, his behavior included depression, wild mood swings, forgetfulness, irrationality, and insomnia – symptoms noted in other players who have sustained brain injuries.

These symptoms are very similar to those seen in neurological disorders such as Alzheimer’s, Parkinson’s, Lou Gehrig’s, and Huntington’s disease, which claimed my mother’s life.

I carry the mutated gene that causes HD but have so far escaped its inevitable, terrible symptoms.

Today I turn 54, an age at which my mother had already begun a steep decline. Birthdays always make me introspective and retrospective, and as I draw to a close an especially intense year in HD advocacy, professional work, and family life, I feel a special need to reflect on my concerns about HD and CTE while waxing nostalgic and a bit autobiographical.

CTE, the NFL, and a ‘public health crisis’

In August, one week before the start of the NFL season, the league settled a lawsuit brought by some 6,000 former players and families who accused the league of hiding the connection between football and concussions. The NFL agreed to pay the players $765 million and was expected to pay an additional $200 million in legal fees.

However, the settlement did not require the NFL to admit any wrongdoing, nor did it state any conclusions about football and brain injuries.

With a dispute emerging over legal fees, the federal judge overseeing the case has yet to approve the settlement.  New lawsuits filed since the settlement have increased the likelihood that the concussion issue will enter a courtroom (click here to read more).

In August, ESPN (Entertainment and Sports Programming Network) abruptly ended its relationship with the PBS (Public Broadcasting System) documentary program Frontline, reportedly because of pressure from the NFL regarding an upcoming documentary.

Nevertheless, in collaboration with two ESPN-based investigative journalists, Frontline in October aired a two-hour report titled “League of Denial,” revealing the NFL’s attempts to hide the seriousness of brain injuries from the players and the public even as physicians studying concussions found CTE in the autopsied brains of dozens of deceased players.

In early November, it was reported that several former NFL players were diagnosed with CTE. They were the first living players to undergo a new kind of brain scan capable of detecting signs of CTE.

Days later, two former college football players filed a federal lawsuit against the National Collegiate Athletic Association (NCAA), claiming it failed to inform players about the risks of concussions and demanding medical monitoring for former players.

Meanwhile, news organizations reported that Pop Warner, the nation’s largest youth football program, registered a nearly ten percent drop in participation between 2010 and 2012. That suggesets the general public had taken strong note of the dangers of football.

“There has never been anything like it in the history of modern sports: a public health crisis that emerged from the playing fields of our 21st-century pastime,” wrote the ESPN journalists, Mark Fainauru-Wada and Steve Fainuru, in an excerpt from their book League of Denial: The NFL, Concussions, and the Battle for Truth. “A small group of research scientists put football under a microscope – literally…. What the researchers were saying was that the essence of football – the unavoidable head banging that occurs on every play, like a woodpecker jackhammering at a tree – can unleash a cascading series of neurological events that in the end strangles your brain, leaving you unrecognizable.”

Common problems and goals

I am struck by the similarities between HD and what scientists, physicians, and former players have described as the symptoms of CTE. HD effaced my mother’s ability to speak and interact with others, leaving her a mere shadow of herself.

I fear the same fate.

As an HD advocate, I believe the neurological disease communities, as well as victims of stroke and traumatic brain injuries from military combat or other situations, should support the efforts to research the causes and symptoms of CTE and support those afflicted by it. Research on these various conditions is mutually beneficial. We’re all part of a larger quest for improved brain health.

Like HD, CTE involves our most important natural resource: our brains. The brain controls all that we do. It makes us individuals and provides us with enormous capacities.

Conditions such as HD and CTE can put a huge emotional, medical, and financial burden on families and caregivers. We need to find ways to prevent, treat, or cure these conditions as quickly as possible.

Advocacy in the workplace

In November, I brought my advocacy into the workplace.

When the University of San Diego (USD), where I chair the history department, announced its voluntary withdrawal from postseason football competition while it investigates a potential violation of rules regarding financial aid and athletic recruitment, I urged the administration to also conduct a review of player safety in light of the revelations about CTE.

My e-mail message led to a constructive dialogue with the athletic director, the NCAA faculty representative, and others to seek ways in which USD, fulfilling its mission of education and social justice, can inform the campus and the local community on the issue of CTE and brain health.

I hope to report progress on these efforts in the coming months.

The larger implications of sports

I have long cultivated an interest in the social, historical, and health-related implications of sports.

During my freshman year at Yale University, I helped support myself by working ten hours per week as an assistant public relations person in the university’s sports information office. I also reported and wrote columns for the Yale Daily News. One of my articles described my experience as one of the first – if not the ­first – male reporters to enter a female locker room.

In another article, a quotation from Yale’s athletic trainer, Al Battipaglia, summed up my own current philosophy about student athletics: “Vince Lombardi said winning is the only thing. Al Battipaglia recites the athletic trainer’s prayer: ‘It’s not if we win or lose, but if nobody gets hurt.’”

At the time, Yale had an extremely cautious, automatic ten-day suspension for any athlete with a head injury.

At Yale I also had the privilege of studying in a seminar on the “American sports syndrome” directed by ABC Sports broadcaster Howard Cosell, one of the most trenchant sports commentators of the 20^th century. Cosell taught us about the contradictions and hypocrisy involved in the world of sports.

Brazil, soccer, and the ‘opiate of the people’

Later, I had far less time to follow American sports as I pursued a career as historian of Brazil, with a specialization in the history of the Brazilian Catholic Church, dictatorship, human rights, and reproductive issues. Throughout much of the 1980s and 1990s, I paid more attention to soccer.

Serious injuries occur in soccer, and fan devotion and violence make our Super Bowl craze seem mild in comparison.

In the past, some political leaders have used soccer as an “opiate of the people” to manipulate the masses. This year millions of Brazilians protested in the streets against their leaders, in part because they were angry over the billions of dollars in government spending on stadia for the 2014 World Cup while public transportation and the health and educational systems remain substandard for much of the populace.

Nevertheless, in terms of the sport itself, I consider soccer as a more graceful and civilized activity when compared to the brutality of football.

Uneasy about football

Starting in the early 2000s, HD rekindled my interest in pro football, thanks to the Chargers’ commitment to the Huntington’s cause.

However, as I’ve reflected on the devastation that disease and trauma can cause in the brain, I’ve become increasingly uneasy about watching football games.

The Frontline documentary “changed forever how I will watch a professional football game – if, indeed, I can bring myself to do so again,” I wrote in my USD e-mail message.

Tracking CTE

My HD advocacy has led me to expand into the history of science, technology, and medicine. Now, with my added concern about athletes and CTE, I will add yet another layer to my advocacy, using my skills as a historian and former journalist.

I aim to track significant news reports about CTE. (Frontline has set up a “concussion watch” of officially reported NFL head injuries. So far this year it has registered 146 incidents.)

I will also monitor the continuing debate about whether football head injuries cause the condition. One worthwhile, in-depth debate about “League of Denial” took place in a published e-mail exchange between journalist Daniel Engber of Slate and author Stefan Fatsis (click here to read more).

Science and risks of CTE

As I’ve learned so well from the Huntington’s movement, effective advocacy requires understanding scientific research. Therefore, I also aim to track the science of CTE.

A number of reports and academic articles on CTE have appeared in the last few years.

The National Institute for Neurological Disorders and Stroke, a division of the National Institutes of Health (NIH), issued a brief report on its December 2012 workshop on the neuropathology of CTE. The report raised more questions than it answered, demonstrating the infancy of research on CTE and outlining a plan for sustained, coordinated research on the condition.

(In August 2013 the NFL donated $30 million to the NIH for research on CTE and other medical conditions affecting athletes.)

Other articles have warned of the potential risks of sustaining brain injuries in contact sports.

“Symptoms of CTE may begin years or decades (after one or multiple concussions) and include a progressive decline of memory, as well as depression, poor impulse control, suicidal behavior, and, eventually, dementia similar to Alzheimer’s disease,” one article states. “Given the millions of athletes participating in contact sports that involve repetitive brain trauma, CTE represents an important public health issue.… It is now known that those instances of mild concussion or ‘dings’ that we may have previously not noticed could very well be causing progressive neurodegenerative damage to a player’s brain.”

Another article outlined the history of traumatic brain injury (TBI) and its relationship to neurological decline, including cases of CTE. “The best data indicate that moderate and severe TBIs increase risk of dementia between 2-and 4-fold,” the authors concluded. “It is less clear whether mild TBIs such as brief concussions result in increased dementia risk, in part because mild head injuries are often not well documented and retrospective studies have recall bias.”

Autopsies of six Canadian Football League players with histories of concussions and neurological problems showed that three had CTE, while the others had Alzheimer’s, Parkinson’s, and Lou Gehrig’s.

Skeptics, the media, and future goals

Some scientists have expressed skepticism about the research on CTE so far.

The latest and most prominent example appeared in a special issue of Neuropsychology Review, published in November and consisting of six articles by a “distinguished panel” of scientists and also an editorial, all on the topic of sports-related concussions.

“One cannot deny that boxing and other contact sports can potentially result in some type of injury to the brain,” the two authors of one article conclude. “There currently are no carefully controlled data, however, to indicate a definitive association between sport-related concussion and increased risk for late-life cognitive and neuropsychiatric impairment of any form.”

While agreeing that CTE is an “important public health concern,” the journal’s editorial highlights the problem of the divide “between media and evidence-based accounts of sports concussion.”

While the Frontline documentary took a positive step in informing the public, it also illustrated a stark societal imbalance.

As the documentary contrasted a scene showing thousands of journalists attending an official 2013 Super Bowl pre-game media event with the handful of reporters who covered a press conference where scientists presented evidence on CTE, it’s painfully evident that sports coverage remains largely an act of cheerleading rather than skeptical journalism.

Further, sports sections of daily newspapers routinely give footnote status to most news about athletes’ injuries. Such coverage focuses on the injury as a factor in a team’s success and rarely in terms of the athlete’s long-term health.

Although the scientific articles referenced here (as well as others) differ in perspective and conclusions, one fact is clear: more research is needed, because the number of case studies of CTE still remains quite small.

A playoff party and nagging concerns

I must admit that, even after keeping the TV and radio off most of this NFL season, I listened with excitement to last Sunday’s radio broadcast of the Chargers’ overtime victory, which, against enormous odds, secured the team a spot in the postseason quest for the Super Bowl.

My family and I are planning a Chargers playoff brunch and mini-party for next Sunday morning, when the team plays in the first round against the Bengals in Cincinnati. We’re inviting friends who, like us, know the devastation of Huntington’s disease – and the Chargers’ many contributions to the HD cause.

I’m sure we’ll all root for the Chargers.

However, we’ll also be crossing our fingers that nobody suffers a concussion or any other serious injury.

Personally, I’m torn between participating in a cultural ritual and standing up for my position as an advocate for brain health.

It’s playoff time – but also time to think of how we can all make the world a better and healthier place in the New Year.

For me, that includes resuming my role as an advocate for brain health and, with the rest of the neurological and genetic disease communities, imagining a world in which CTE, HD, and other similar disorders can be fully treated and, even better, prevented.