Evidence of meeting #5 for Subcommittee on Sports-Related Concussions in Canada in the 42nd Parliament, 1st session. (The original version is on Parliament’s site, as are the minutes.) The winning word was going.
A video is available from Parliament.
As an Individual
I want them to work together. It's asking a lot, especially of the structure of research and medicine, but in my deepest heart of hearts, I wish they could work together—take what exists and go from there.
Windsor—Tecumseh, NDP
Okay. Right now, are they separate? The system that we have—
Chief Executive Officer, Concussion Legacy Foundation
Yes. But you don't necessarily always need all the scientists working together. There are different perspectives on this disease, and the brain bank you're referring to.... The neuropathologist has, for example, chosen to be an expert witness for the NHL in lawsuits, which is something that would probably prohibit future brain donations. It's a complicated political field, but the important thing is that you want more people working on this, whether it's independent or whether it's collaboratively, because it's a powerful method of research.
I'm still trying to convince Eric to pledge his brain to me, but we'll get to that at some point.
As an Individual
Once there's full-on collaboration, I'll sign up. Until then....
Mr. Peter Fonseca (Mississauga East—Cooksville, Lib.)
Listen, you guys make a great tag team, but this concludes our first round.
Mr. Lindros, you're welcome to stay and still participate, but we will now move to Mr. Nowinski.
Mr. Chris Nowinski is a Harvard grad who played in the NFL. We have him here for all of that, but he is also co-founder and CEO of the Concussion Legacy Foundation.
Chris, the floor is yours.
Chief Executive Officer, Concussion Legacy Foundation
Thank you.
It's an incredible honour to be here, especially as an American invited to help this conversation continue. I'll share with you what I can. I have a short opening statement. I'll use it as an opportunity to give you an overview of things that might move the discussion along. I've been in this area in multiple ways, starting as a patient.
In terms of my background, right now I'm CEO of the Concussion Legacy Foundation. We have a sister organization here, Concussion Legacy Foundation Canada, led by my colleague Tim Fleiszer, who's sitting behind me. He's a former Canadian Football League player. I did not play in the NFL—I was not that good—but that's okay now. I'm co-founder of Boston University's CTE Center, which has the world's largest brain bank of athletes. It is led by Dr. Ann McKee.
I advise multiple sports organizations. Deep down, I consider myself an advocate, but I also went back to school to get my Ph.D. in behavioural neuroscience, so maybe I'll be able to talk about the research more effectively.
I got into this the hard way. Concussions were never part of my life until they were all of my life. I played all sports growing up. I played football at Harvard, but then I chose to become a professional wrestler with WWE. That was the most fun job in the world, until I got kicked in the head and got a concussion. The problem was that I didn't realize, as a 24-year-old Ivy League graduate, what a concussion was. I blacked out and had a throbbing headache, but I was able to complete the match, so I didn't think that was enough to tell the athletic trainer.
I lied and hid my symptoms for five weeks, until they got so bad I developed what's called “REM behaviour disorder”: I developed sleepwalking. That was the symptom that forced me to stop. I jumped through a nightstand off a bed. That has haunted me until this day. I still struggle with it. My sleep is so impaired I actually sometimes don't want to go to sleep. I fear it.
I didn't understand the risks, but once that happened, I was honest about my issues. For me, though, it was too late. To this day, 16 years later, I still struggle with headaches. I still struggle with other symptoms. I can't exercise without feeling nauseous.
Where I stand today, I'm happy to be where I am. I know that many people suffer far worse. But it did open up my eyes to the problem that it wasn't just me dealing with this.
I was lucky to be sent to one of the world's experts, Dr. Robert Cantu, outside of Boston. He helped me realize how I got to this point. He did it in a very interesting manner. He asked me how many concussions I'd had before this last one. My answer was “Zero”; in 19 years of contact sports, I had never had a diagnosed concussion. He said to me, “Well, I know you don't think you've had one, but how many times were you hit in the head and saw stars, were dizzy, were confused, or forgot where you were?” I started laughing, because it happened so often I just never called it a concussion and never told anybody about it. I have vivid memories of the sky going from blue to orange in football games, but it wouldn't last so long that I would have to actually pull myself out.
He taught me in that session that, first, I didn't know what a concussion was. It turns out that most athletes of my generation did not understand it. As well, rest was critical for recovery. By barrelling through every one and ignoring them, I'd made my damage much worse, with maybe long-term consequences down the road. At that point, I didn't really appreciate that. At that point, we didn't know as much as we know today. Right now we know far more.
So my first aha moment came from talking to Dr. Cantu and then reading the medical literature he pointed me to. We've known for a hundred years that concussions are bad for you. We've known that we shouldn't be putting people back into games, and we've ignored it for various reasons. Partially, I think, it's from the influence of professional sports wanting to control this. Partially it's from athletes not wanting to believe what was going on and not being educated on this issue. But it wasn't really just a medical problem; the bigger problem at that moment was cultural. We didn't want to deal with it, so we were hiding this.
Part of the work we did at the beginning, when I started the foundation in 2007, was just to raise awareness of this issue and say that it doesn't have to be this way. We don't have to throw away our health by trying to be a hero and fighting through these concussions. Luckily, I think, that's one of the great advances we've made in the last 12 years. We now realize that athletes shouldn't be going back. We now have amazing spokespersons like Eric Lindros telling young athletes they don't need to be a hero in this situation. We've made some progress there.
The next part I want to focus on is the long-term effects, because this helps inspire how much effort we should spend in preventing these problems, especially when we talk about concussive long-term effects.
They're sometimes harder to understand, because we talk about them as symptoms. Whether it's memory issues or depression or anxiety or sleep issues or headaches, pathologically it often doesn't have a great name. We have post-traumatic degeneration, white matter changes, micro-bleeds. We have all sorts of cellular abnormalities that we pick up, but it's not a smooth story.
What has become a very interesting story, though, is the research on chronic traumatic encephalopathy. We used to call this degenerative brain disease “punch drunk”, because we thought it was only in boxers. It turns out that it's basically in all contact sports. It's in military service. It's been seen in victims of abuse. If you get hit in the head too many times, it appears to be able to spark a degenerative process that can lead to symptoms that sometimes are like Alzheimer's, but in mid-life they can look like bipolar disorder. We're talking about cognitive issues, behavioural changes, mood disorders. We've learned a lot.
How I got involved with the brain bank was that I said, “We need to figure this out faster.” We reached out to Boston University and the U.S. Department of Veterans Affairs, with Dr. McKee, and we said, “If we get you brains of athletes, will you study them and help us answer this question?” They've been amazing. It used to be that I had to call widows when someone passed away. Now, of the 175 brains we got in the last year, 90% were from people calling us. We get multiple calls a day from people who have lost somebody, who say, “Their life went off the rails, and we think it's due to CTE.” The really uncomfortable part of this is that we see the disease in 70% of the donated brains. The donated brains are mostly driven now by the families. We cannot diagnose this disease in living people. We have no clinical diagnostic criteria for doctors. Yet families are right, seven out of 10 times, in diagnosing their loved ones with this. That tells me that this is probably a much bigger issue than we realize.
We don't know how to diagnose it. We can't treat it. We don't know exactly how or why it progresses. We don't know all the risk factors or all the risk modifiers, but we have learned a lot. We know what symptoms it appears to cause. We need to keep digging into that. We know they can be destructive. We've learned—and this is important—that we don't see a correlation between diagnosed concussions and the disease.
Based on our experience, the assumption is that if you get one or two concussions and never get hit in the head, your risk of CTE is microscopic. But in 20% of the brains that have had CTE, we have no diagnosed concussions in the history, but they've had thousands of hits to the head—through football or ice hockey or rugby—and the correlation appears to be with thousands of hits to the head or the number of years you play. If you play a contact sport for a couple of decades, we see increased risk not only of CTE, but also of Lewy body disease, which can cause Parkinson's symptoms. So it appears to be a dose-response issue, and this is an important construct for policy.
We published our experience with football players in 2017. We had 110 out of 111 NFL players with the disease, seven of eight Canadian Football League players with the disease, 48 of 53 college football players with the disease, and then six of 26 high school football players and zero of two youth football players. What that shows you—there's a little bit of a correlation there—is that the longer you play, the worse off you are. That maybe gives us a window into what we should do going forward.
There is a similar experience with hockey. Nine out of nine NHL players studied for this disease had it, but four out of eight youth hockey players studied also had it—“youth” meaning non-professional. The four who had it all died by suicide at the age of 30 or earlier, and they all had significant concussion histories. So this is an issue we need to really dig into.
We've also seen that the earlier you start, the more the disease appears to affect you. We need to have a discussion around the fact that hitting kids in the head while their brains are developing appears to cause consequences. You don't have to be a neuroscientist to realize that's probably true. I think we need to talk about that in terms of our prevention efforts.
In talking about going forward, I think we need to focus on education, on research and on prevention. I'm happy to dig into a lot of good ideas that we have, but I think the government can play an important role in the prevention issue. Think about where government protects young people. You set ages for when they can do dangerous activities. At what age can you drive a car? At what age can you smoke a cigarette? At what age can you drink? We also regulate exposure to things that are dangerous for the brain. We regulate how much lead you can have in paint in your home or in gasoline, because we know it causes brain damage.
Well, if that's the case, maybe we should regulate how often you're allowed to let your child get hit in the head, or how many concussions you're allowed to have. It can change the course of your life if we don't take this issue very seriously.
I know that Eric has been avoiding the discussion of professional organizations, but I'm in a different position, having never participated in professional sports. We should perhaps talk about the terrible leadership we're seeing from professional sports on this, the denial of these long-term consequences, and the historical abuse of players, putting them back in and saying, “Everything's going to be fine.” We've made some changes. We've had some advances, but it doesn't mean your kid will be safe and it doesn't mean your kid will get the right message.
I'll end my opening statement there. Thank you for having me. I look forward to your questions.
Mr. Peter Fonseca (Mississauga East—Cooksville, Lib.)
Thank you, Dr. Nowinski.
We'll move to Dr. Doug Eyolfson.
Charleswood—St. James—Assiniboia—Headingley, Lib.
Thank you, Chair.
Thank you, Mr. Nowinski.
I'm an emergency physician. Part of our training was in sports medicine. Part of it was in environmental medicine, by which I mean exposure to whatever environments you have. It is refreshing to see sports in general listening to the medical profession.
I think back to the days when heat illness was first being recognized. A lot of people don't know this, but 500 Americans a year die of heat illness. The vast majority of them are athletes and military recruits. It used to be that coaches prohibited the drinking of water during practice, because they thought that drinking water made you weak. They actually made athletes put on rubber suits and exercise in the hot sun because all that sweating would make them lose weight. If they died, well, you know, they shouldn't have been there in the first place.
February 6th, 2019 / 7:05 p.m.
Chief Executive Officer, Concussion Legacy Foundation
They weren't tough enough.
Charleswood—St. James—Assiniboia—Headingley, Lib.
Exactly.
In regard to prevention, we still sometimes hear this fatalistic “If people are going to do this, they're going to get hurt.” But you can do activities that are risky and minimize the risk. I downhill ski; I wear a helmet. I ride a motorcycle; I wear a helmet—and armour.
Charleswood—St. James—Assiniboia—Headingley, Lib.
You try to minimize it.
But we still find, as you say, among the leadership in sports, particularly at the professional level and in the media.... There's a rather famous Canadian sports broadcaster, known for very loud shirts, who tends to get very hostile when people mention increased protective gear or getting the fighting out of hockey. He actually says very terrible and derisive things to people who say that there should be no fighting in hockey.
Do you think professional sports and the media should have more of an influence if we're going to change the culture of sport?
Chief Executive Officer, Concussion Legacy Foundation
That's a great question. I do think it is incumbent upon pro sports to play a positive role in this issue. I think we have to appreciate, and draw a fine line, when it comes to the purpose of sports at the professional level and the purpose of sports at the youth level. You know, as somebody who used to be in what some people call sports entertainment, I look at all professional sports as entertainment. No disrespect.
Chief Executive Officer, Concussion Legacy Foundation
There is some aspect of.... I'm an adviser to the NFL Players Association. They choose to play the game. We tell them the risks. They think that's the best decision for them and their family, and that's okay. But every professional sports league has influence on youth sports, whether they underwrite it or fund it or market to it, so they need to send the right message about this issue.
That's a long-winded answer just to say that I don't think we need to ask them not to have a dangerous sport. If that's what they want to have, if that's going to bring in the revenue, that's okay. But they can't minimize this injury and they can't set the wrong example on television that's going to hurt kids. For example, when an NFL or NHL player who clearly shows concussion signs on the ice or on the field is allowed to go back into the game, and they pretend that's okay, that is the worst public health messaging you could possibly imagine. We all theoretically trust that organization to be doing the right thing by those players. We need to hold them accountable for doing the wrong thing in that situation.
That includes the media. We just launched a program, called the Concussion Legacy Foundation media project, to train broadcasters on how to cover concussions the right way, because they've never had any training. Some of them are old school, but that's because no one has ever told them otherwise. They don't appreciate what the risks are—that if you put somebody back in there, they could die on the ice from another blow to the head, or they could have their life completely derailed, which would affect their children and their family.
It's an important question. We do need to ask for more.
Charleswood—St. James—Assiniboia—Headingley, Lib.
Thank you. It's a good lesson, because I think the culture is...and it's not just with head injuries; it's with all sorts of things. A number of years ago, there was an NHL series in which one of the star players developed appendicitis, and they were actually reporting this as something very aspirational, that basically the doctor was monitoring him and he was playing while on intravenous antibiotics, because of course if he went to the hospital to get his appendix out he would be out of the playoffs. I was astonished, as a physician, that the physician still had a licence to practise medicine after that. This is clearly not the standard of care in any other profession, but somehow everyone was applauding this behaviour in the NHL, and I was just gobsmacked by this. I think we do need more leadership from these organizations for this.
Even though you have different rules in a more junior league and in a professional league, or even more tolerances, does that have an influence on how the younger players will react, or how they will play?
Chief Executive Officer, Concussion Legacy Foundation
Yes, based on my personal experience, I do think everybody sees the lower levels modelling what they see on television. That's a reality. You talked about intentional injuries—for example, running a goalie. If that's allowed at the NHL level, or at the higher levels, it would be emulated at the youth levels. That's sort of an accepted thing. That's another reason why we need a great example from the higher levels.