A leading concussion specialist has accused the AFL and the players’ union of attempting to “divide and conquer” by hesitating to endorse the Australian Sports Brain Bank (ASBB) as the primary place for players to donate their brains, despite a direct recommendation to do so by a coroner.
More than a year after the recommendation by the coroner who oversaw the Danny Frawley inquest, the AFL says it is “well progressed” in discussions with both the ASBB and the Sydney Brain Bank, with a view to selecting one or the other – or both – as partners for its mooted AFL/AFLPA brain bank donation program.
But Dr Adrian Cohen, an expert in traumatic brain injury, director of Headsafe and senior lecturer at the University of Sydney, has alleged the governing body is overlooking the ASBB’s “specific expertise” and unrivalled bank of sports brain tissue because it “isn’t aligned” with the AFL’s approach to concussion research.
In February, 2021, Victorian coroner Paresa Spanos handed down her findings into the death of the St Kilda great Frawley, confirming a postmortem analysis of his brain found he had low-stage chronic traumatic encephalopathy, a brain disease linked to repeated blows to the head.
That diagnosis was made via an autopsy conducted by the ASBB, to which Frawley’s family donated his brain after the former Richmond coach took his own life following a severe decline in mental health.
Frawley’s brain is one of 21 to have been tested by the ASBB since it was set up in 2018 specifically to understand CTE and other brain pathology associated with repetitive head injury in sport and elsewhere. Others include those of Shane Tuck, Polly Farmer and Andrew Macpherson, along with two anonymous former professional rugby league players – all of whom were found to have CTE lesions on their brains.
Over the course of four years, the ASBB – established by the neuropathology department at Sydney’s RPA hospital in partnership with the Brain and Mind Centre at the University of Sydney and the Concussion Legacy Foundation in the United States – has become the pre-eminent brain bank in this space, having to date received more than 600 donation pledges from amateur and professional sportspeople.
The coroner recommended “that the Australian Football League actively encourages players, and their legal representatives after their death, to donate their brains to the Australian Sports Brain Bank in order to make a meaningful contribution to research into chronic traumatic encephalopathy and thereby improve the safety of future generations of footballers and others engaged in contact sports.”
In a formal response to the coroner’s court of Victoria, the AFL’s head of legal and regulatory, Stephen Meade, said the governing body proposed to work with the AFL Players Association to create “a structured and ongoing program of active encouragement of Australian footballers to donate their brains to research” but would not endorse the ASBB.
“At this point in time, the AFL does not [contrary to the coroner’s AFL recommendation] agree to the active encouragement of the donation of brains to the Australian Sports Brain Bank to the exclusion of other brain banks in Australia,” Meade wrote in the letter dated 24 May, 2021.
Meade wrote that the AFL and the AFLPA may nominate “multiple brain banks”.
The AFLPA sent a separate response, also on 24 May, 2021, from its general manager of legal and player affairs, James Gallagher, who said it was “supportive of ASBB’s work” but “believe it is necessary to undertake further investigation into all brain banks”.
When contacted this month by Guardian Australia, an AFL spokesperson said it was in continuing discussions with both the ASBB and the Sydney Brain Bank, “which would see brain donation and research as important components of the AFL’s planned longitudinal study”.
“Those discussions are well progressed, and we anticipate being able to make a further announcement in relation to the planned AFL/AFLPA brain bank donation program in the coming months,” the spokesperson said.
The AFLPA said this week it had encouraged players, through its alumni communications, “to donate their brains to research by Australian brain banks, including the Australian Sports Brain Bank and the Sydney Brain Bank, in an effort to enable a consistent approach to brain donation by former AFL and AFLW footballers”.
The AFLPA declined to provide Guardian Australia with a copy of its alumni communications, citing the need for confidentiality.
It is unclear who would oversee the AFL/AFLPA brain bank donation program or who would take the lead on any future project at the SBB – should it be used. The SBB told Guardian Australia talks are under way with the AFL but declined to comment further.
It is also unclear, should the AFL partner with both, how it would ensure a streamlined approach both in terms of uniform research and clarity of direction for players and their families registering to donate.
“The AFL want to use a different brain bank to divide and conquer,” Dr Cohen said. “As in, ‘let’s not just have one place where all the information is collated, one authority – particularly one that isn’t aligned with the way we think – let’s have multiple’. And I’m sure they would give money to multiple [brain banks] just so the Australian Sports Brain Bank doesn’t get to be the sole authority.
“Yes, the Sydney Brain Bank has brain tissue. They don’t have sports brain tissue. They don’t have any specific expertise in that.”
The highly respected SBB, established in 2009 and operated by not-for-profit research institute Neuroscience Research Australia (NeuRA), holds more than 700 brains and works with numerous research programs across multiple neurodegenerative disorders.
It recently completed a yet-to-be-published study examining the prevalence of CTE in its brain bank population. However, unlike the ASBB, it does not routinely retrieve brains interstate, nor does it issue clinically accredited reports.
“We issue accredited clinical reports, we don’t just issue research reports, which don’t have the same sort of standing,” said Dr Michael Buckland, the ASBB’s founder and executive director, and head of the department of neuropathology at Sydney’s Royal Prince Alfred hospital.
“We have a proven track record in CTE diagnostics and the ability to facilitate brain donations across Australia. We would hope the AFL would work with us. And that, in fact, was the stated wish of Polly Farmer’s family when they went public, that the AFL would work with us to solve the problem of CTE.”
The Sydney Brain Bank’s primary sport connection is a partnership with the Retired Professional Rugby Players brain donor program. That program is run through Newcastle University and headed up by the neuropsychologist Associate Professor Andrew Gardner.
In 2019, the NRL provided Gardner with $250,000 in funding for the associated Retired Professional Rugby League Players Brain Health Study, conducted in partnership with the Spaulding Research Institute at Harvard Medical School.
