Concussion Inc. Page 5
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.
Some of us who admire Nowinski’s work with SLI and want to see its mission succeed worry that he is falling into the peer-review trap. We also worry that the NFL’s $1 million grant to SLI’s sister Center for the Study of CTE at Boston University will become part of a larger pattern of delay and dilution.
The Boston group has said that it is moving away from announcements to journalistic outlets and toward releasing findings only after they are published in peer-reviewed scientific journals. They made an exception 11 days ago with the Dave Duerson press conference because, Dr. Robert Cantu explained, they always bow to the wishes of the family.
But even assuming that the policy is plausible, I believe the wishes of the family are the wrong exception. As a result of Nowinski and company’s own logic and energy, sports concussions are a major societal issue. Instead of carrying on about peer review and then making exceptions anyway, when convenient, I would rather hear the response to a call from Omalu, in his forthcoming Neurosurgery article, for new protocols allowing automatic CTE study of postmortem brains of certain populations, such as athletes in contact sports.
Please don’t tell me I’m being simplistic. I’m being simple. Obviously, there’s a role for editorial gatekeepers — in academia, journalism, and elsewhere. The point is that we don’t need to study 500 more dead football players’ brains before coming to common-sense conclusions about important actions and political solutions. Take it from an old college dropout: peer-review rhetoric is mumbo-jumbo.
23 May 2011..........
We now know that hockey player Derek Boogaard’s recent mysterious death at age 28 was caused by a fatal mix of alcohol and the painkiller oxycodone. After Boogaard died, his family donated his brain to the chronic traumatic encephalopathy research group in Boston, led by Dr. Robert Cantu and spearheaded by Chris Nowinski. The Boogaard tragedy followed close on the heels of the Boston group’s announcement that Dave Duerson had CTE when he committed suicide.
A cluster of recent sports suicides highlights the American concussion crisis, of course. But it also raises another tough question: after years of being asleep at the switch on the scope and magnitude of industrial brain injuries in our couch-potato entertainment, are the sports establishment and media now contributing to a feeding frenzy that is actually causing additional deaths rather than preventing them?
Viewed in the round, the CTE story is starting to look a little bit like the rape story — an outrage for which awareness and reporting levels inevitably influence public understanding. The root issue should drive consensus, but the methods are delicate. In raising all this in my own indelicate way, I am not indicting Nowinski, who has done the yeoman’s work of putting the whole subject in play in the first place.
In a piece last September, “Why a 2011 NFL Strike or Lockout Would Be the Best Thing for America,” I predicted that this year would be one of reckoning for concussions. Naturally, a yahoo reader (with a small “y”) immediately wrote to call me “an idiot.” I’m not sure he realized that even as his billet deux rocketed through the ether, police in Denver were discovering the suicide of a young Broncos player named Kenny McKinley. Did McKinley have CTE?
In February, while the sports pages were filled with stories about what a great guy Dave Duerson was — even though he was on record in Congressional testimony, and as a member of a pla
yer-management compensation board, as downplaying the connections of retired players’ mental disability claims — a former NFL player named Ricky Bell died, with little attention, in South Carolina at 36. His family refused to comment on how. Did Bell have CTE?
My theory is that CTE news is scaring athletes, as well it should. And that some of them could be getting scared to death. Or at least, with the onset of their own horrible multiple-concussion syndrome symptoms, finding themselves wondering if it’s better to end it all than to live an additional 10 or 20 years — with the prospect of winding up homeless and self-destructive like Mike Webster, or homicidal like Chris Benoit.
If there’s a lesson here, it’s that the federal government has to get on with the task of cleaning up this mess. Investigating the sharp angles of football helmet hype doesn’t even begin to cut it. There’s a long and sorry history here of research conducted and research subtly censored, and the trail is paved in NFL gold.
Another lesson emerging from the Duerson suicide is that the dog-and-pony show of brain-study-finding news conferences may have passed its peak of usefulness. At this point, we need appeals for more brains to study a lot less than we need more action.
I’ll give the last word of this round to Michael Benoit, the father of Chris Benoit. Mike and I have had our ups and downs, but I’ve never doubted his integrity.
“What are my thoughts?” Benoit said to me. “My thoughts are that the CTE doctors and advocates need their behinds kicked. Everyone loves to be in front of the cameras talking about the latest case of CTE, but no one is talking about the people who are currently suffering. The research world is an old boys’ club. How many more brains do we need to prove that concussions can cause CTE?
“Here’s what I say: if you are an athlete in a contact sport, take three to five grams of high-grade Omega-3 oils daily. If you get concussed, it will provide protection for your brain and greatly reduce your recovery time. If you are already showing symptoms of CTE, take five to 10 grams of Omega-3 oils daily. It will help your brain by reducing inflammation, and it is a mood enhancer and may help people who are suicidal.”
1 June 2011..........
On the subject of what is being done on behalf of the untold number of former athletes who are walking around with serious brain injuries (though many are capable of doing little else), I caught up with Brent Boyd.
Following the suicide of Dave Duerson, I told the full story of the confrontation between Boyd and Duerson in a Congressional hearing room in 2007, and of the latter’s less-than-helpful service on the NFL disability benefits board. Boyd, founder of the advocacy group Dignity After Football, also is on the advisory board of Chris Nowinski’s Sports Legacy Institute. However, Boyd is highly critical of the Boston chronic traumatic encephalopathy research team’s acceptance of a $1 million NFL grant to support the Center for the Study of CTE at Boston University. Boyd and others believe that this skews research and compromises advocacy.
Last year Robert Stern, Nowinski’s co-director at the center, co-authored a study of an innovative imaging technique to determine if CTE is detectable in living people, a key component of the search for cures. (At the moment the disease can be identified only in postmortem brain tissue.) The findings from this round of “virtual biopsies” suggested that all five athletes who participated — three football players, one boxer, and one wrestler — have CTE.9
Brent Boyd, 54, whose six-year NFL career ended in 1986, was one of the football players who underwent a virtual biopsy. As a result, he considers himself one of “the only yet identified living persons to walk the earth knowing they have deadly CTE.”
Boyd also thinks he was “a guinea pig” who was treated brusquely and received no counseling or support in the wake of the finding. “It was like, ‘Here’s lunch money, you have significant CTE, and here are your return flight tickets. Thanks for coming!’” The ordeal “has left me sleepless for months,” Boyd said. “What am I supposed to do with this information?”
Chris Nowinski is out of the country. This morning I spoke with Dr. Robert Cantu, the leader of the Boston CTE research team. Cantu emphasized that he was not involved in the “virtual biopsy” study, which was presented last December in Chicago at the annual conference of the Radiological Society of North America.
“We can have an index of suspicion that certain individuals have CTE, and given Brent’s history of brain trauma, the level of suspicion is very high,” Cantu said. “But we still don’t yet have blood markers or any other way of identifying CTE with certainty, except through finding tau protein in the brain tissue of dead people.”
Cantu added that as a physician, which many CTE researchers are not, he regards himself as having doctor-patient relationships and being sensitive to the need for treating research subjects with dignity and humanity.
Cantu also acknowledged that counseling and support are missing pieces of concussion reform work: “It would be ideal for SLI to have a personal advocacy wing. That is not as easy to pull off as it may sound. On almost a daily basis, SLI gets contacted by people offering help in these areas, but before accepting that help, we must determine their level of qualifications for assisting those with brain trauma with their cognitive and other life problems. Without a doubt, building that network is a very important task as research and advocacy move forward.”
9 June 2011..........
On May 24, Judge J. Frederick Motz of U.S. District Court in Maryland ruled against former Minnesota Vikings offensive lineman Brent Boyd in the latest round of his long-running administrative and legal fight with the Bert Bell/Pete Rozelle NFL Player Retirement Plan.10
This is a miscarriage of justice, turning not on a serious substantive dispute about Boyd’s football-caused mental illness so much as on procedural technicalities about whether his reapplications of previously denied claims established “changed circumstances.” This is another chapter of shame for both the National Football League and the NFL Players Association.
This does not need to be the last chapter of the Brent Boyd story. Unfortunately, though, Brent told me yesterday that his attorney, Mark DeBofsky of the Chicago firm Daley DeBofsky & Bryant, does not have the resources to pursue an appeal on a contingency basis (that is, without payment of ongoing fees rather than the hope of recovering them as part of a settlement or judgment). But that does not mean that a fund cannot be set up on Boyd’s behalf to help sustain the work of his legal team, or that other representation cannot be persuaded to join the effort on a contingency or pro bono basis.
10 June 2011..........
To the best of my knowledge, not a single media outlet except this blog has reported on the May 24 ruling in Baltimore by U.S. District Court Judge J. Frederick Motz, who threw out retired Minnesota Viking lineman Brent Boyd’s case against the Bert Bell/Pete Rozelle NFL Player Retirement Plan.
Boyd’s attorney, Mark DeBofsky, told me, “We felt we had presented sufficient evidence of changed circumstances and that despite the court’s finding of no conflict of interest, the numbers suggest otherwise. Given the paltry number of claims paid by the NFL disability and retirement plan for head injuries, it appears the plan is biased against such claims out of fear of an avalanche of brain trauma disability claims.”
Cut through the cowardly judge’s legalese and split hairs, and it comes down to this: the court decided that the retirement plan “did not abuse its discretion” in rejecting Boyd’s reapplications and administrative appeals. There was no showing of “changed circumstances” — even though we have tons more basic information on the legitimacy of Boyd’s claim of traumatic brain injury from football than was known at the time of the original filing some 11 years ago, and even though one of the three Players Association members of the disability claims board was Dave Duerson, who himself had chronic traumatic encephalopathy when he committed suicide in February.
What extraordinary judicial incuriosity.
Boyd attorney DeBofsky told me that during litigation, “We had requested discovery that would essentially have been an audit of the plan and benefits paid for head injuries, but the judge denied our request.”
Judge Motz’s rulings on discovery and on the merits were both farces. They must not stand.
12 June 2011..........
On May 24 — the very day Judge J. Frederick Motz of U.S. District Court in Maryland dismissed former player Brent Boyd’s appeal of the National Football League retirement plan’s rejection of his mental disability claim — Mike Lopresti of USA Today wrote a touching column headlined “Struggle continues for widow of Dave Duerson.”11
In the piece, Alicia Duerson called her former husband’s February suicide “the tip of the iceberg” of the NFL’s traumatic brain-injury problem. Lopresti recounted the former star defensive back’s domestic violence arrest, personal bankruptcy, and postmortem finding of chronic traumatic encephalopathy. He was a big man with a shrinking brain; Alicia Duerson said, “His brain had started dying 10 years ago.”
There’s one small thing USA Today didn’t discuss, and Alicia Duerson apparently is not incorporating into the talking points of her CTE public awareness tour: the fact that Dave Duerson served on the review board, consisting of representatives from both the league and the NFL Players Association, which has stonewalled other retired players’ claims for head-injury benefits. In 2007, he even argued the retirement plan’s position on Capitol Hill and, during a break at a Congressional hearing, exploded in abuse at Brent Boyd and old players union leaders Sam Huff and Bernie Parrish.
And without that crucial connection, Dave Duerson’s suicide becomes just one more sob story.