- In the wake of SI's story and documentary on the late college QB Tyler Hilinski, the co-founder and CEO of the Concussion Legacy Foundation reacts and reflects.
Chris Nowinski is the co-founder and CEO of the Concussion Legacy Foundation. Nowinksi, as told to SI senior writer Greg Bishop, reacts to SI’s story and documentary on Tyler Hilinski, a Washington State quarterback who committed suicide in January. Hilinski’s family later found out that Tyler had Stage I chronic traumatic encephalopathy or CTE.
I wish I was more surprised by the diagnosis. One thing I consistently struggle with is that nearly all of the college and professional football players whose brains we’ve looked at had the disease. And even if you factor in who the sample is coming from, families should not be right 95% of the time at guessing this.
This is the third active college football player that we know about that had CTE. We’ve seen CTE in football players who just played a few seasons. So we don’t know where the floor is. But it’s safe to assume that one season of football in theory could give you CTE. The risk is not zero after one season. It just goes up each additional year you play.
We’ve seen it in kids as young as 17. But now, we’re talking about the youngest when he stopped playing football was 14. We recently had a case of a young man who had post-concussion syndrome in eighth grade. He played five years of football, seven years of ice hockey, baseball. But had never really played a sport after the eighth grade. He never got better from his post-concussion syndrome and he also died by suicide at the age of 20. He had Stage 1 as well.
There’s two discussions after stories like this publish. We have to divide them. One is the discussion about whether his CTE was caused by playing football. And there’s less intelligent pushback on that these days. But it’s still strong because people see the game under threat, and there are a lot of people who are more focused on protecting this abstract concept of the game than the real concept of the people who play the game. It wasn’t that long ago that the NFL was in complete denial and just said CTE doesn’t exist and that was the stance of a lot of people until the last five years.
But where there’s a really fair debate is: did CTE play a role in the decisions that Tyler and others made that led to their suicide? And we can’t answer that. But it’s absolutely something we should discuss. Because there’s a known and incredibly strong relationship between concussions and increased risk of suicide. Most studies peg it as a three to four times greater risk of suicide, just from one concussion.
We don’t have to have this discussion around CTE. We can just talk about this as a concussion problem. There’s almost zero chance Tyler got out of all those years of football without concussions.
Ten years ago we had 10 cases of CTE with football players. Now we have hundreds. And we’re funding a young investigator who’s looking at the psychiatric symptoms of CTE. We talk about CTE as in the frontal cortex but really we’re also seeing lesions in Stage 1 in deep areas of the brain stem that are involved with regulation of anxiety and depression. And there’s more to Stage 1 CTE than we realize.
I’ve always hated the analogy that he had the brain of a 65-year-old man. It just confuses the hell out of people. What (the doctors) are referring is the tau pathology. It looks like a brain of somebody who’s elderly, because you just never see that sort of tau pathology in young people. But symptomatically they’re completely different. People need to understand: just the presence of the neurofibrillary tangles and those lesions, you would think, if you didn’t have the age of the person, this person must have been old. That’s what they’re saying. Because it’s just so rare.
We don’t want everybody who might have early stage CTE, which may include me, to think this is going to destroy my life. Because now that we have hundreds of case studies of football players, many are living what would be seen as normal lives, until they reach an age where they don’t live normal lives anymore. Sometimes it’s not until their 50s, 60s or 70s where they start having symptoms that appear to be related to the disease. That being said, we have dozens of young people who have died and had this disease and whose families say their personality completely changed. And there’s a very good chance that change was due to this disease spreading in their brain. So we also should not dismiss early stage pathology.
The focus should be on: what can we learn from this? If you follow the breadcrumbs on what we’re seeing with football and CTE and with changes in behavior and suicide, it’s fair to say, hey, let’s look at this. Because this is something that we can prevent, if it was caused by football. We could prevent it by having kids start playing tackle football later, which would lower their risk of CTE dramatically.
I get why Tyler’s brother, Ryan, (who has committed to South Carolina), still wants to play. I don’t know if you could have convinced me to stop playing when I was young. This is a problem they just can’t feel. It’s hard to walk away. I mean, the short-term costs, which are known—lose your friends, have to find something else to do, lose your identity, lose your path. The short-term costs, which are high. The long-term costs to them are completely unknown because, let’s face it, a high school athlete does not have the capacity to understand the risk. It’s the same reason they can’t go serve in the military or can’t sign a legal contract. We’re struggling to have medical doctors interpret this evidence in an appropriate manner.
I hear insurance rates are going up because people are starting to realize that there could be lawsuits that follow, that people actually win. I do think the moment we have an accurate diagnostic test will be a moment of reckoning for the game. Because you can imagine people seem to be comfortable and cool with at least one out of 10 NFL players having this disease, which is what we’ve seen over the last 10 years, that one out of 10 who died have had it. It’s actually a much higher percentage in the last five years. We’re comfortable with adults getting it. But we’re not going to be comfortable with more kids getting it. If you put a high school team through the test and you find out it’s more than one kid, who’s a minor, who has this disease already, people may not be able to sign their children up anymore. Who’s going to let them play?
I look at it this way. There’s still nearly one out of five Americans who smoke, despite the fact they know it’s got a good chance of accelerating their death. So there always will be people that are just going to ignore the science and say it’s worth it and it’s my choice. But I also get the sense that once we can diagnose this and get an idea of the scope there’s going to be a scramble. And there’s a decent chance that no one wants to go back on that field who doesn’t need the money, that isn’t being paid. And that would shut down all but the professional leagues.
We’re starting to build these interesting webs of teammates who all had this disease. You start to realize, like, you have lightning striking twice or three or four times on one starting lineup. We’re getting a brain almost every other day. We’re going to get 200 this year. There will be more stories to tell, more families like the Hilinskis.