Concussion Inc. (5 page)

Though fair enough as far as the response went, this reticence to use the Duerson cautionary tale for more aggressive generic comment on the political landscape ahead may point to the limitations of the Sports Legacy Institute's new million-dollar partnership with the NFL. In a related vein, I believe the question is not whether youth football coaches should be cutting back on contact in practices; it is whether youth football should exist at all.

Further unfortunate fallout from the public progress on concussion reform is the schism between the Boston group and the West Virginia Brain Injury Research Institute headed by Drs. Julian Bailes and Bennet Omalu. The latter, now chief medical examiner of San Joaquin County, California, is the researcher who took the NFL head-on while more established voices — often doctors with league connections and other commercial conflicts of interest — were still equivocating in journal articles.

A hint of the Boston–West Virginia turf war was evident yesterday after Boston University's Dr. Robert Cantu correctly linked CTE to the phenomenon of “punch-drunk syndrome” in boxers, which was first isolated in 1928. Cantu went on to suggest, incorrectly, that CTE became widely recognized in the '60s and '70s. In fact, the pathology was neither named nor defined before Omalu came along in 2002. If there was widespread awareness of the scale of concussion syndrome in the immediate aftermath of football players such as Al Toon getting blasted into early retirement in the 1990s, then the NFL made sure it was a well-kept secret.
5

In any case, the point isn't who gets credit for the discovery of CTE so much as who will pay the bill for the current generation of sports-generated broken lives. This exercise runs deeper than the NFL's bottom line. Half-baked prospective solutions driven by an image-conscious, money-hungry corporation will not significantly arrest the CTE pandemic. And as writer Matt Chaney has noted, it is non-professionals and their families — along with the nation as a whole — who bear the brunt of the NFL lobby's current campaign to shift responsibility to state legislatures by mandating new practices for cash-strapped school and other amateur athletic programs.

A better idea: make commissioner Roger Goodell and his 32 owners cough up some realistic restitution for the brain-injury mill from which they profit so obscenely. A mere $20 million in research grants and $7 million in aid to retired players with dementia won't cut it. That is the background of my question at the Duerson press conference.

5 May 2011..........

Alan Schwarz of the
New York Times
has taken the Dave Duerson story exactly where it needs to go: toward no-holds-barred examination of the NFL disability benefits system, which Duerson himself, with cruel irony, had helped administer and defend.

Another question beginning to circle among retired players whose claims were denied during Duerson's tenure is whether they can refile given his admitted impairment. Board votes are not disclosed to applicants or to the public.

John Hogan, a lawyer for dozens of players in disability matters, said that he might request an audit by the United States Department of Labor to see how Duerson voted on claims.

“He had to exercise a high degree of care, skill, prudence, and diligence — the CTE findings, coupled with his suicide, certainly raise the question of whether he was capable of properly fulfilling those duties as is required in such an important undertaking,” Hogan said. “It therefore calls into question the possibility that some or all of the decisions he made when passing on disability claims are suspect, and perhaps invalid.”
6

I welcome Hogan's assumption of a more aggressive stance than he articulated to me in the immediate aftermath of Duerson's February suicide. Back then, while not hesitating to brand the entire NFL disability apparatus illegitimate, with or without the Duerson factor, Hogan had added that probing Duerson's specific cases on the compensation board would be a tough road to hoe because of confidentiality laws and the possibility that he had actually cast his own votes in favor of retired players whose claims were rejected.

NFL lawyer Douglas Ell reinforces this point to the
Times
: “He knew of no case where ‘if Dave's vote were disregarded, the outcome would have been different.'”

I think the league's position is wrong. The disability committee is not tainted because of
Duerson's individual votes
, but because of his
overall participation
. As one of the three NFL Players Association appointees, Duerson carried an expectation to deliberate and advocate on behalf of a constituency in need. To use a very loose analogy, if a lawyer is found to have provided inadequate representation to an accused criminal, the process is understood to be flawed and a rehearing required. Wargaming the final verdicts of the disability panel to determine whether they would have turned out the same anyway does not remove their procedural cloud.

At Monday's press conference in Boston, officials at the Center for the Study of Chronic Traumatic Encephalopathy (a partnership of Boston University and the Sports Legacy Institute, recently infused with a $1 million NFL grant) declined to go there. But even if the best-known faces of concussion reform are getting unhelpfully cautious in their rhetoric, the sports commentariat and the federal government have the means to take the Duerson narrative all the way home.

11 May 2011..........

A couple of different readers, with a couple of different viewpoints, have told me that my coverage of the announcement of Dave Duerson's chronic traumatic encephalopathy maligned Boston University's Dr. Robert Cantu by stating that he had vaguely backdated the definition and naming of the disease in a way that disrespects the work of Dr. Bennet Omalu.

On this point, I think the critics are right and I was wrong, so let me correct the record here.

After that, I'll proceed to explain why I believe exposure of my error only deepens the suspicions that the sports medical establishment fell down on the job and that the National Football League was none too eager to see that a better job be done.

What Cantu said in Boston a week ago Monday was that CTE was identified in boxers as “punch-drunk syndrome” in the 1920s, and “since the '60s and especially the '70s it has been known as chronic traumatic encephalopathy, with multiple case reports in the world's clinical and neuropathological literature.”
7

That is accurate. Nor is there any reason to dispute this fuller chronology from the Sports Legacy Institute:

The term “chronic traumatic encephalopathy” appears in the medical literature as early as 1969 and is now the preferred term. Through 2009, there were only 49 cases described in all medical literature since 1928, 39 of whom were boxers. Many thought this was a disease exclusive to boxers, although cases have been identified in a battered wife, an epileptic, two ­mentally challenged individuals with head-banging behavior, and an Australian circus performer who was also involved in what the medical report authors referred to as “dwarf-throwing.”
8

CTE remained under the radar when a Pittsburgh medical examiner named Bennet Omalu identified CTE in two former Pittsburgh Steelers who died in his jurisdiction in 2002 and 2005. He published his findings, drawing the attention of SLI co-founder Chris Nowinski, who worked with families to deliver three more cases that Dr. Omalu and others diagnosed with CTE, including SLI's first case, former WWE wrestler Chris Benoit.

What happened?

In my several lengthy conversations with Dr. Omalu, he has taken credit for the term CTE; on one occasion, Omalu even reminded me that he had been the sole, and not merely a major contributory, coiner of it. To the extent that I ran with Omalu's assertion, bad on me. If I've somehow misinterpreted what Omalu has been telling me (but I don't think I have), then double bad on me. (Omalu declined comment in an email this morning.)

Now that that piece is out of the way — again, apologies to Cantu, Chris Nowinski's SLI, and the Center for the Study of CTE for the implication that they were deflecting due credit to Omalu by fudging history — what does all this mean for the story of the national head-injury crisis in sports?

The answer is that it is, if anything, even less flattering to the powers that be. Bennet Omalu didn't discover CTE or even attach the most widely recognized handle to it.
He was just the first to identify CTE in football players.

CTE was wending its way through the medical literature throughout the 1970s in association not just with boxers, but with battered women and circus performers as well. Meanwhile, as concussions took a skyrocketing toll on football players over the next 30 years, no one made the connection.

Remember Travis Williams, “The Road Runner,” a speedy running back who set kickoff return records as a rookie for the 1967 Super Bowl champion Green Bay Packers? He was finished way too early, battled depression, wound up penniless in a homeless shelter in Richmond, California, and died at 45. Of course, we can't know if Williams had CTE, but his story is just one of dozens or scores or hundreds of similar ones prior to that day in 2002 when Omalu happened upon Mike Webster's brain.

All of which leads to another broad observation, about the folly of “peer-reviewed scientific literature.” This phrase, preferably uttered in hushed tones and on bended knee, is the talisman of the same priesthood that has failed a sports-mad nation in disseminating needed public health information. Peer review, in my opinion, is a pastiche of standards, honored as much in the breach as in the observance when convenient, and it comes embedded with its own set of social, professional, and commercial biases.

12 May 2011..........

Yesterday I apologized for incorrectly suggesting that Dr. Robert Cantu had airbrushed the history of chronic traumatic encephalopathy research in his remarks last week at the Dave Duerson brain study press conference.

Today I offer an extended P.S. on the nuances of that research and its political landmines. The story of CTE involves maimed and prematurely dead athletes, of course. But it also includes egos, grants, media coverage …
careers
. The behind-the-scenes rivalry between the Boston research group, led by the Sports Legacy Institute's Chris Nowinski and Boston University Medical Center's Cantu, and the West Virginia research group, led by Drs. Julian Bailes and Bennet Omalu, is a glimpse into that world. The stakes are high for the parties — and for the rest of us.

Let's stipulate that any controversy over the origins of the naming of this brain disease is a sideshow in comparison with the substance of what Omalu brought to the table — unfortunately, it was the autopsy table — over the past decade. I would summarize it thus:

• For many years, there was an understanding that boxers suffered various symptoms resembling Parkinson's disease, accompanied by dementia.
  
• There was also an escalating appreciation that people in all walks of life who suffered major traumatic brain injury could develop a disease that resembled Alzheimer's.
  
• Beginning with Mike Webster in 2002 and continuing through to the Nowinski group's initial and breakthrough finding on pro wrestler Chris Benoit in 2007, Omalu put what we now call CTE on the map. Omalu determined that minor blows to the head, over time, with or without documentation — notably in football, hockey, lacrosse, and wrestling — could result in a disease distinct from ­Alzheimer's.
  

Omalu has defined CTE as a
disease entity
. He also has confirmed that what we used to think of as Parkinson's or Alzheimer's or their offshoots are not these diseases in victims of CTE, which has distinct pathognomonic diagnostic features.

Nomenclature aside, there was no media attention given to CTE until after the publication of the Mike Webster paper in 2005.

About that nomenclature:

• There is evidence that “punch-drunk syndrome” in boxers, or dementia pugilistica, was also being called “traumatic encephalopathy” as early as the 1930s.
  
• A 1996 paper in
  Pathology
  , “Dementia Pugilistica in an Alcoholic Achondroplastic Dwarf,” by David J. Williams and Anthony E.G. Tannenberg, says that dementia pugilistica is “otherwise known as chronic progressive post-­traumatic encephalopathy of boxing.” Not exactly the same as CTE — though so close that I probably would have felt compelled yesterday to clarify and apologize to the Boston folks even if they hadn't also shared with me …
  
• A 1966 paper from
  Proceedings of the Royal Society of Medicine
  , “Mental Sequelae of Head Injury,” by Henry Miller, has a subsection headed “Chronic Traumatic Encephalo­pathy.” Though Miller did not seem to go anywhere with this term in the body of the article, nor give it the abbreviation CTE, the exact sequence of the three words clinched at least the minimal point that great minds prior to Omalu had thought at least somewhat alike. And it confirmed that I'd stubbed my toe in my May 3 story on Duerson.
  

13 May 2011..........

At this moment the national sports concussion fight, like many others, is bogged down in a fetish over “peer-reviewed scientific literature.” I argue that a lot of the vaunted peer-review process is pompous bunk, a ritual by elites to demonstrate their eliteness while giving aid and comfort to the status quo.

Peer review is a bit like another academic institution: tenure in higher education. The concept is that it promotes intellectual freedom. But in all too many cases, those who have it don't need it, and those who need it don't have it.

In 2007, Chris Nowinski started his Sports Legacy Institute in Boston and got the brain of dead pro wrestler Chris Benoit for Dr. Bennet Omalu to study. When the Boston group announced that Benoit (who, at age 40, had murdered his wife and their seven-year-old son before killing himself) had chronic traumatic encephalopathy, World Wrestling Entertainment derided the finding as “not published in a peer-reviewed journal.” Then, when Omalu published a paper about it in a peer-reviewed journal, it was “only” the
Journal of Forensic Nursing
, not one of the high-end publications like
Neurosurgery
. Of course, the reason was that Omalu, for a time and for all intents and purposes, had been blackballed by
Neurosurgery
, which was in the National Football League's pocket. Earlier this year Omalu did resume publishing in
Neurosurgery
; I'm waiting for the next pointless excuse from the naysayers.