I'd love to tell you more about it. I wish that Arthur Brown had finished his research and was further along...and this might be part of it. He has worked hard, and we're hopeful of positive results—or negative results, for that matter.
When you think about research, you want to get things happening as quickly as possible, and overall, I think we can do better. When I look at the system of research, I wonder if are we collaborating enough. It's hard to raise money. I've asked about 30 different researchers for their opinion as we're restructuring Rowan's Concussion Legacy Foundation.
It's a three-part situation where we are looking at research and how we can do research better. How we can make it more efficient and more effective? How can we get to our results and tell the world about our results more quickly? Then, when we have our results, how can we get through them, and how can we translate them into something that's clean, well vetted and ready for the street? The third part is how we handle the street, how we market this, and how we present the findings as quickly as possible, so you're coming out of the research arm right into the street.
We have a bunch of different ideas on that, and I could just touch on one. A lot of people have questions about their kids going through certain situations, and I'm just so confused as to why we can't have one protocol across our nation. I just don't get it.
Certainly, if you're in different sports, there are going to be a couple of different things that you're going to look at in getting back to play, but for 90% or so, whether you're in horseback riding or playing soccer, it's the same thing. We're talking about sport concussion here. A lot of concussion is not occurring in sports; it's occurring in playgrounds or with kids at school, and things like that. I don't think we want to forget about that. I think if we did this properly, it would blanket much more than just sport.
I think doing it once would be cost-effective. We have great doctors. If you look at what goes on and who's representing Canada, we have the names. We have great research facilities: McGill, UBC, Calgary, Western, U of T. It goes on and on. It's everywhere. We have the people. How can we get this working as a group? That's where I see frustration.
First of all, I think it has improved. Now, when parents are going out and watching hockey, yes, they're cheering for their kid and looking out for their kid and the kid's teammates, but more and more, you're seeing people look out for the other team as well, which is amazing. It's what we want. This is starting to happen. The communication has been there. It's been moving. Now we have a window to really define it, clean it up and work within it.
Let's start with the low-hanging fruit you mentioned—hits to the head. Ken Dryden speaks about this all the time. I'm sorry, but if you hit someone on the head.... To make it black and white, any hits to the head are penalized. That would clean up a lot. I think that's a very easy one. It's simple. You're going to find, too, that if you start it in the culture with the young, and it's spoken about at school, it's going to progress as people grow.
The school system, to me, is the way we really inform. In Ontario, we have Rowan's Law Day. The idea was to take an hour and a half once a year and really go through what concussion is and what to look for. Let's look for it within. Let's look for it in our friends, and in the people we're going to be competitive against. Let's make sure we're all safe. That's our big concern.
Starting young and moving our way up.... Why can't we start with all the grade 1 students throughout Canada? Let's start there, on Rowan's Law Day. The messaging in grade 1 would be a little different from that in grade 2, and a little different from that in grade 3. As you progress and get older and more mature, and you understand more, the message correlates to the age group. I think starting in the school system, just for that one day, that hour and a half, would make a huge difference. It's possible. The information is there. God knows, we have amazing doctors in Canada who can vet this. It's about getting all the groups to say, “We want to work under one hood.”
A lot of people are trying, and a lot of people are pulling on the rope. I think we get further ahead if we work together as one. If they're receiving federal or provincial government money, you kind of tell them what to do a little bit: “This is how we're going to change. This is what we'd like to see. We're not shoving it down your throat. Let's work to just change this a little bit and see how it goes.”
First of all, thank you for your kind words.
Was it equipment? No. I think what happened in the nineties was two or three really massive impacts. I remember being hit by Darius Kasparaitis in Pittsburgh in an afternoon game, and coming to and being in the Pittsburgh dressing room, or the visitors' dressing room. They had the logos of the Pittsburgh Penguins everywhere. I thought I got traded to Pittsburgh. I guess the silver lining was that, at that particular moment, I had the chance to play with Mario Lemieux. But kidding aside, it was just a huge impact.
Again, with Scott Stevens, in game seven of the semifinals, he pulled a bit, coming over, and he hit me up top as I was reaching and poking. Those are just truly big impacts.
Do I think the numbers are going up? I think, to a certain extent, because of awareness.... I'd like to think that people are being honest. Again, I don't look to pro sport for this, because you have a situation where you have a contract coming up, and you don't want to be labelled as the guy who's had concussion problems. It's going to affect your.... You have your family, your kids, and so on. I think we leave pro sport out of it. But if we can be completely honest, all the way through minor hockey...and the culture, bring that into play. Let's be honest with ourselves here. At times, the worst person to ask is the person who is concussed.
In terms of common sense, I think we should take a little extra time. We go on the cautious side. But I think there was a bit of a peak because of the awareness. It's great that people are talking about it and they're looking out for themselves. But I think the numbers have been pretty steady for the last few years.
No one's tackled it, but it's the hits to the head, unfortunately. Someone who always comes to mind is a player in Boston. His name is Zdeno Chara. He's so much taller than everybody that inevitably there's some contact here and there, but he does his absolute best not to have that contact occur, especially playing with someone like Patrice Bergeron, who has gone through a concussion, so he's very mindful of that. Getting rid of hits to the head, that's a really easy one.
We spoke of starting to hit, or learning to deal with body contact, after we've gone through puberty so there is more of a level playing field. I think that's a really easy one.
I don't know what goes on sometimes in parents' minds, when they want to put their kid through hockey 12 months a year. I mean, arenas are great and all, but they're not the end-all and be-all places to be. Everyone needs a break. I think it's true for everything. Research is coming back that kids who are taking breaks are doing better, so I think that's a great one.
It's about acting on these things. We know that Dr. Carolyn Emery has done the research on contact. Common sense says that if we don't have the contact, injuries are going to go down and concussions are going to go down, yet we still have the contact. Why is that? Where are our groups? Where's Hockey Canada on this?
It's a tough one, but I think it's a pretty easy fix. It wouldn't take a lot to change, and I think it would be for the better. We're still going to have great players—actually probably better players, because they're going to be better skaters. They're going to be better stickhandlers and puck movers, and think the game differently. Trust me. Learning how to work someone off a puck physically and accepting or giving body contact is something that you can pick up pretty quickly.
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.
Certainly. The effort to ban heading in soccer before a certain age.... Right now we're talking about banning all purposeful, repetitive hits to children's heads before age 14. That's a goal that we haven't reached. With soccer, it was based on studies. There's one important study showing that about one third of concussions that were happening to middle school soccer players were due to the act of heading, kids trying to put their head in the same space and competing for a ball. So we said, well, this is a skill they don't need to have when they're young. They can pick up heading when they're older.
First, we said, let's cut one third of concussions out of middle school soccer. Second, we found our first case of CTE in an American soccer player. He was a young man who died in his late twenties of Lou Gehrig's disease, ALS, which we have now found is linked in some way to CTE. We used that case to say, look, they don't need to have this exposure to repetitive head hits. Try this when you get home: Find a kid who has never played soccer; throw a ball at their head and they'll usually duck. That's because they're smarter than we are, and we're the ones who tell them to stick their forehead in the way and hit it back to us. It's not a natural thing.
That was the idea. We were led by a bunch of great American soccer players like Brandi Chastain and Taylor Twellman. We were actually able to get this through.
With football, we actually have much stronger data now, with hundreds of cases of CTE in football players that.... The old way of doing things is wrong, and it's been destroying lives. The best solution we have is reducing the exposure of children to hits to the head.
One interesting thing about the history of American football is that youth tackle football wasn't a thing until maybe the 1960s and 1970s. We're now seeing some of those athletes get older, and what we're finding very clearly in our data is that those who started younger have worse outcomes. So, if they play 20 or 30 years of football, and they're basically destined to have CTE, why don't we cut out those first few years? Tackle is not a skill.... Football is a unique situation. Having played it, I know it's not a skill-based sport. It's about being an athlete; they don't need to start banging their heads.
When they're young, based on the research we've seen, we're actually recommending that parents choose flag football: cut out those 300, 400 or 500 hits to their kid's head every fall, but still let them learn the rules of football and have fun. Then, when they're older, their brains are more mature. They've gone through puberty and they can build their upper body strength. They can be at a high school level that has trained coaches and athletic trainers, and then maybe it's okay to play. But before that, it's not.
To get into the big picture discussion we're having in the U.S.—and you may have watched this on HBO Real Sports last week—part of the issue is that the NFL is underwriting this game in our country to the tune of over $200 million invested in youth tackle football in this century. It's partially driven by the fact that their data shows that if they play youth tackle football while young, they're more likely to become a fan later on. It's driven by a financial decision. Even if you talk to leaders in football, pro coaches, college coaches, ex-players, you hear them say that kids should not be playing this. You can't take a 40-pound kid and put a four-pound helmet on their head and ask them to run into each other and expect good outcomes.
I'll try to be as concrete as possible.
From a policy perspective, what's in Rowan's Law is very similar to what is in the laws that exist in every state in the U.S. If you're going to play sports, everybody needs to be educated on concussions. That means we require it for coaches, and we require it in many states for the athletes. In some places, we even require it for parents, because parents don't realize that the average concussion isn't going to be diagnosed at practice. Those symptoms may show up when the person gets home that night. If they don't know what to look for, they won't piece it together. Mandating education through sports organizations, I think, is absolutely appropriate to do.
In the U.S., in most states, we mandate that you have to be cleared by a medical professional to return to sports after a concussion. I've heard about the backups for going to doctors as a reason why people don't get medical clearance. Finding a way to fix that issue, whether you need more trained doctors, or whatever.... It's absolutely appropriate to say that you have to be treated by a medical professional and cleared before you can return to sports, because returning to sports too soon is often how lives get derailed.
On the research side, it's hard to mandate specific things, but certainly convening a group to potentially put together a research road map and investing that time in getting scientists together to say where the gaps are and how we close them....
I mention that second just because, when I look at this issue as a public health problem, it's going to take decades to develop treatments for this or new ways to diagnose it using biomarkers on the sideline. That's an investment of time and effort, but right now we can draw a line in the sand and stop a whole lot of these problems on the prevention side, whether it's preventing the impacts in the first place, preventing mismanaged concussions or preventing a child from hiding a concussion, because we educate them better.
In terms of changing the culture, I would add that, if you're going to do education for athletes, it can't just be asking athletes to self-report, because asking a 10-year-old to diagnose their own brain injury in the moment they have a brain injury is an insane plan.
One program we've put together, which we do up here as well, is called Team Up Speak Up, where the primary message we give to children is not that you need to look out for yourself—that's the message they have already received—but looking out for your teammates. Your teammate is probably not going to know they're concussed, so if you see something, it's your responsibility to speak up to a coach or to a parent and say, “I'm worried about them; check them out.”
Prevention-wise, I think looking into the idea that there should be minimum ages before it's open season on a child's head in sports is important. Again, I look at that like lead exposure. We have five-year-old kids in America, again, 40-pound kids putting on a four-pound helmet and running into each other, and we know they're getting hit in the head hundreds of times. We also know that, at the NFL level, we have guys walking away from the sport and turning down millions of dollars because they don't want to take that risk. The idea that we put kids at this risk when they don't understand what the long-term effects could be, because they're not old enough to understand what the long-term effects could be.... We usually don't assume they can predict this until they're 18.
When Eric mentioned checking at 15, to me that's an obvious one. When we brought checking down to young ages, we weren't thinking about the brain; we were thinking about preparing them for the money down the road. From a public health strategy, it's absurd that we encourage kids to run into each other.
Does anyone here play in any adult sports leagues? Are there any ice hockey players? Do any of the men here play in checking ice hockey leagues as adults? Of course not. We would never do that to ourselves. We're too smart for that. You know you need your brain down the road, so the idea that we'd put 13-year-olds in that situation without giving them an option to not check is cruel, I think.
There aren't many opportunities to talk about federal changes. I would say there are a lot of recommendations.
I think that's an incredibly important point. In college, I remember being required to go to a gambling thing for sports. Every athlete had to go to a gambling issue, even though there was one case of people gambling on their own games in all of the United States.
I can promise you that if they're in a contact sport, 10% of those athletes are going to be diagnosed with a concussion over the next coming season. Probably 30% to 50% of those who have it are not going to say anything. The idea that you wouldn't mandate a concussion conversation but you'd mandate anything else is potentially bad, short-sighted policy.
I do think the idea of mandating.... You know, we're not born understanding our brain. Unless we actually sit there and talk about it, we're not going to appreciate it. I didn't realize until I was a couple of years into this work that we don't have pain nerves in our brain. That's why we don't feel anything. That's why we're so reckless with it. The feedback you get is that you have to interpret this mild headache as a brain injury, even though you get mild headaches from having the flu or other issues. You're right that we need to ask more of ourselves. We also have to understand the pitfalls that are coming.
I'll quickly give you one interesting study I just came across. A former colleague of ours, Christine Baugh, recently was able to survey four division 1 college football teams and found that their likelihood of reporting concussions diminished the more concussions they got. If you survey doctors, they'll tell you they start retirement conversations at three or four diagnosed concussions.
This survey found that they'd tell you about the first concussion. They'd tell you about the second one, and they might tell you about the third concussion. Fewer than half would tell you about the fourth concussion. Not a single athlete in this entire group had more than four diagnosed concussions, even though many of them admitted to having more than 15 concussions.
There are a whole lot of social aspects to this that we have to prepare people for. It is just very complex.
That's a good point. All right, where do I take this?
The interesting thing is that a lot of stuff we're talking about today has been in the medical literature forever. We've always known that a hit to the head can cause your brain to malfunction. It can cause structural injury. It can cause symptoms, most of which are acute, but some can become very long-term. We now know that those hits to the head can lead to degeneration and problems down the road.
We know that those hits to the head are probably worse when you're young. Kids take not only longer to recover, but there are things called developmental windows in the brain. If children have a brain injury before they're supposed to develop a certain skill—a good example would be if a kid has a brain injury before he learns to speak—they're going to be delayed dramatically and they may never catch up.
The idea that we need to protect kids is well accepted. What's interesting is that what is not accepted is the idea that we shouldn't hit kids on the head. I think that's the best way to look at this. That is not an accepted premise in North America. I like to steer the conversation there all the time.
The best thing we can do for all of these issues is prevent them. We can get into medical billing and all the nuances of what to do for you once you are in the system, but the biggest opportunity we have is prevention. We need to use our influence and knowledge to rein in sport, which in a lot of ways has become more about boosting enrolment and capitalism, creating jobs, than about necessarily doing what's best for your kid.
The idea we have today on year-round sports still boggles my mind. In my dissertation, I had to deal with an issue where I was studying a soccer team in a high school. I put sensors on their heads, and we were counting how many times they were hit on the head. I didn't imagine that the kids were also allowed to play on a private soccer team the other days of the week. I didn't realize it until afterwards, and I had to put that in my limitations, that these kids were also playing soccer somewhere else, 7 days a week, some of them for 12 months a year.
When we look at how bad the brains at our brain bank are today, those were athletes who were playing probably three or four months a year—a season a year of sports. We don't have a lot of 12-month-a-year soccer players. We also don't have “bigger, stronger, faster” in there. That's something we don't talk about either: our increased training and nutrition. If you look at an NFL team, they're 20% larger. They are faster than they were, and their brains are no tougher. The idea that.... You will hear that we've solved most of this problem and it's behind us, but that's not the most likely situation.
The worst of this is coming, which is why we're so dedicated to saying, “Let's draw a line in the sand. Let's fix what we can now. Let's stop creating this by letting kids get hit on the head, for years, while their brains are developing. Then, let's really dig in and try to help the folks who have been damaged.”
It's not just athletes; it's also our veterans. Whether it's our veterans or your veterans, they are people who have served our countries and need help. Unless we really invest and create this research roadmap and put money towards it, we won't have answers.
I'm now 40 years old, and I may need the answers at some point, so I urge you to hurry up. If it's not me who is going to be affected by this, it's certainly all my buddies.