by Irvin Muchnick
Bennet Omalu, protagonist of Will Smith’s fictional (and at times fanciful) movie vehicle, is an equity partner in TauMark, LLC, a California company with exclusive licensing rights to an experimental imaging probe used in research on chronic traumatic encephalopathy and other neurodegenerative diseases.
Omalu’s unpublicized commercial interests may hold the key to his decision — roundly criticized in this space — to establish an eponymous, and ethically dubious, nonprofit foundation at the University of Pittsburgh.
The Bennet Omalu Foundation was set up in association with creators of the Concussion movie. As we shall see, it either supplements or altogether supplants Omalu’s previous efforts with the Brain Injury Research Institute at West Virginia University.
A crossover trustee of both groups, Robert Fitzsimmons — a Wheeling attorney who represents the family of the late Pittsburgh Steeler Mike Webster — did not respond to our request for further information for this story. University of Pittsburgh vice chancellor for communications Ken Service and West Virginia University director of communications John Bolt also did not return email messages.
Among our questions is whether the foundation was applying to the Internal Revenue Service for exemption from the public disclosures ordinarily required of nonprofits, on the grounds that such exposure might harm intellectual property. The research and development history suggests that attracting requisite venture capital in the race for detecting CTE in living persons is an area in which the West Virginia institute has lagged.
Definitive answers are hamstrung by the failure of the http://bennetomalufoundation.org website — which was launched last month to coincide with the movie opening — to provide any contact information, other than multiple convenience links for financial donations. In addition, the descriptive material in the group’s publicity contains no specifics on any anticipated projects. The foundation simply asserts that its mission is “to advance the humanity of science.”
In 2013 a UCLA research group, led by Dr. Gary Small, a professor of psychiatry and Parlow-Solomon Professor on Aging, announced the first use of a brain-imaging tool to identify abnormal tau protein accumulations in the brains of CTE victims.
One of the co-authors of the Small team’s research articles on this subject is Omalu’s West Virginia institute, and now foundation, colleague Julian Bailes. Future reports at Concussion Inc. will focus on Bailes’ outlandish outside commercial ventures; one of them, his endorsement of a purported concussion-alleviating collar for football players, rivals in outrageousness the exploitive and scientifically unsupported enterprises of Joseph Maroon and others at the University of Pittsburgh Medical Center.
Some critics of the Omalu Foundation, including this writer, also believe that Bailes’ statements in support of youth football go beyond the standard misleading nature of football industry-affiliated doctors, and are so blatantly false that they should disqualify him from serving as a colleague at the Omalu Foundation. This is especially so given Omalu’s sporadically stated belief that youth football should be curtailed. For example, part of Bailes’ presentation template is that there have been “no deaths in youth football” — when in fact there have been scores of such deaths in the last generation; and those deaths, as well as catastrophic injuries, are ongoing. (Bailes is the chief medical adviser for Pop Warner Football.)
In the UCLA press release for the Small team’s announcement of the publication of their findings in the American Journal of Geriatric Psychiatry, Bailes is quoted calling potential detection of CTE in the living “the holy grail” of this area of research. It is certainly the holy grail of commercial research. I count myself among those highly skeptical of whether, in practice, this welcome new field of medical knowledge, diagnosis, and therapy ultimately will spur, rather than hinder, the public health debate over youth football. As with advocacy of municipally funded medical triage units on site for every practice and game, this cost-uncontrolled feature of visionary medicine might be spun to further delay a meaningful discussion of public football’s future.
In a paper last year for the Proceedings of the National Academy of Sciences, Small and Bailes, as two of the co-authors, noted that they were also co-inventors of the [18F] FDDNP PET brain-imaging technology “covered under University of California, Los Angeles patents and licensed to TauMark, LLC.” FDDNP is shorthand for the chemical compound bound to the plaques and tangles of the brain which are associated with Alzheimer’s.
The PNAS conflict-of-interest disclosures further represent that Omalu is among others with “a financial interest in TauMark, LLC.”
The PNAS acknowledgments include the support of the West Virginia Brain Injury Research Institute. However, the institute’s IRS Form 990 for 2014 (a public document for 501(c)(3) charitable organizations) shows that it was in the red that year, with only $27,145 in revenues and $32,985 in expenses. These figures are dwarfed by the fundraising might of the University of Pittsburgh, whose sprawling medical research centers and clinics comprise the largest employer of a region extending from Western Pennsylvania to Youngstown, Ohio.
The opportunity to contribute more substantially to the work of the UCLA team, and ultimately claim better returns from their commercial applications, may have been at least part of the motivation for Omalu’s agreement to start the foundation at Pitt.
The initial listing of the Bennet Omalu Foundation at GuideStar, the leading online tracker of nonprofits, actually shows its location as Wheeling, West Virginia, not Pittsburgh. It is impossible to know whether this is a mistake. Concrete information about the foundation might not emerge before the filing of the group’s 2015 federal tax return, which is due in April but could be extended for up to six months.
Even then, the public could remain in the dark: Internal Revenue Code section 6104(A)(1)(d) exempts nonprofits from disclosure of information that “relates to any trade secret, patent, process or apparatus” if such disclosure would “adversely affect the organization.”
Concussion Inc. believes that celluloid hero Bennet Omalu, while busy advancing the humanity of science and claiming to prioritize his advocacy of the downsizing of the football industry, owes his acolytes a clearer ledger of his dealings on Planet Earth — specifically, in the cutthroat world of venture capital.
P.S. 1/6/16: West Virginia University spokesperson John Bolt told us, “The Brain Injury Research Institute was a project of Dr. Julian Bailes when he was on faculty here. It was established independently from West Virginia University, and has not operated on this campus since his departure.” Bailes went from West Virginia to the NorthShore University HealthSystem in Evanston, Illinois, in 2011.