Concussion, sports brain injury: ACC, NZ Rugby swapped notes rejecting link

Former All Blacks Geoff Old and Carl Hayman, who both believe their brain injuries stem from their playing days, with Old's wife Irene Gottlieb-Old.

ACC provided a pre-publication briefing to New Zealand Rugby (NZR) of its response to an upcoming media article about sports-related brain injury, highlighting its rejection of a link between concussion and specific neurodegenerative disease afflicting All Blacks and other rugby players.

The briefing by ACC and its deliberate effort to point out its rejection of a direct link has led advocacy and support group Brain Injury New Zealand to raise what it considers ACC’s reflexive rejection of cover for brain trauma.

ACC’s advice to NZR came a month after a major paper in an international medical journal which said there was a “high likelihood” of a link and no “plausible alternative” explanation.

The specific condition is considered to be a potential sleeping giant for the Government’s accident insurance scheme as overseas studies show a high incidence of chronic traumatic encephalopathy among those who have played contact sport.

CTE is a neurodegenerative disease linked to repeated trauma to the head. One difficulty plaguing those seeking ACC cover is that CTE is only proved when a brain is studied after death.

In the United States, the National Football League made a US$1 billion (NZ$1.6b) settlement with 4500 former players over the long-term effect of head injuries.

In the United Kingdom, there are two class action lawsuits under way by 280 former rugby players over a failure by sporting bodies to protect them from a range of brain injuries, including CTE.

In New Zealand, such lawsuits aren’t possible because of ACC’s role as the state insurer, funded through levies such as those paid by NZ Rugby.

Documents released through the Official Information Act (OIA) show that ACC and NZ Rugby communicated over media queries from two outlets this year who produced significant stories on rugby and CTE.

In both cases the contact took place ahead of publication and involved the Government’s insurer and NZR swapping notes over the condition or how their responses were being handled.

TVNZ’s Sunday show ran a story in February on Justin Jennings, the first New Zealand rugby player to be definitely found to have CTE after his death in the United States in 2020, aged 50. Years of personality changes and mood swings led to alcohol and prescription pills - a common self-medicating feature with CTE - before multiple organ failure claimed his life.

The 30-minute investigative piece ran on February 19 and told Jennings’ story through his family’s eyes while also visiting brain research facilities here and in the US.

It also featured an interview with neuroscientist Chris Nowinski, a former professional wrestler who founded the CTE and concussion advocacy organisation, the Concussion Legacy Foundation, and co-founded Boston University’s world-leading CTE research centre.

In an email sent four days before the TVNZ story aired, NZR wrote to ACC to let it know about the upcoming broadcast in an email which described Nowinski as a “contact sport critic”.

TVNZ's Sunday show revealed in February the first New Zealand rugby player known to have died with CTE.

Names were redacted but email signatures show it was NZR’s injury prevention programme manager who told the ACC’s “sport and traumatic brain injury” staff member the briefing was confidential because it was a TVNZ exclusive.

“This is an exclusive for TVNZ so you can imagine they might be keen to promote the story next week via the likes of Breakfast and Seven Sharp. There is also the potential they will use Nowinski as part of this and NZR are preparing for that to happen.

“This may have little or no impact on ACC however, we thought to let you know just in case. We do have background information and key messages that were provided by NZR to the journalist.”

A month later, sports journalist Dylan Cleaver - a former Herald sports editor and investigative journalist who has written on CTE for years - made contact with ACC in an email marked “in confidence”.

In his email, he asked a range of CTE-related questions seeking answers to be included in a piece to run in The Spinoff about ACC accepting a claim of probable CTE from one-game All Black and former New Zealand First MP Tutekawa Wyllie.

It was a significant news feature as it revealed the first successful claim from an All Black known to have been accepted by ACC and only one of fewer than four claims it has accepted.

ACC’s “sport and traumatic brain injury” staff member alerted NZR’s head of communication, asked for more information and organised a time to speak on the phone about questions posed by Cleaver.

The ACC staffer sent NZR the questions from Cleaver, removing those specific to Wyllie for privacy reasons.

Two days later, NZR thanked ACC for the conversation - no information was included in the OIA relating to that - and asked to be kept informed around its response to Cleaver. It appeared from the email communication that ACC and NZR spoke at least once more before the answers were sent.

ACC provided to NZR a chunk of its response to Cleaver - minus anything related to Wyllie’s personal situation - but assured the sporting body “our full response does not suggest that ACC accepts a causal link between concussion and CTE”.

Former All Black Geoff Old in 1980 playing for Manawatū, second from the left. He now experiences a range of symptoms linked to CTE but was rejected for ACC cover.

An ACC spokeswoman said it had provided the assurance around not accepting a link between concussion to NZR in response to a “direct question”.

She said ACC’s relationship with NZR was focused on injury prevention, adding: “Given the relevance of concussion and CTE to both organisations and increasing volume of research into CTE it is appropriate for ACC and NZ Rugby to share knowledge and information.”

An NZR spokesman said “collaborative meetings” should be expected between it and ACC with which it had a 20-year injury prevention partnership.

Brain Injury New Zealand president Iain Watkins - a neuropsychologist - said ACC’s contact with NZR carried an “echo” of the sort of communication between insurance companies and the tobacco industry as evidence was emerging of links between smoking and lung cancer.

Watkins, who previously assessed All Blacks for head injuries, said it was important ACC and NZR had a good working relationship to focus on injury prevention, on which both were doing positive work.

But he said ACC’s stance was not seen as reflecting a benevolent approach to injury claims; data from a recent selection showed 85 per cent of 4000 rejected claims were overturned on appeal.

On CTE, Watkins said: “I think ACC is playing its cautious game which they always do about a new diagnosis that they might have to cover.”

He said it was highly likely claims would increase for CTE and other brain injury caused by rugby as people became aware their symptoms were related to their playing days.

“We have a whole lot of people who have problems and had no idea what the problems were. They will come out of the woodwork.”

Watkins said systems around All Blacks, who were athletes at peak condition, had been superior to players at lower levels who were more likely to have been exposed to repeated concussions.

Former All Black Geoff Old’s wife Irene Gottlieb-Old described to the Herald the heart-breaking deterioration of her husband’s health in the three years since his claim for injuries suffered playing rugby from 1972 to 1985 was rejected in 2020.

Former All Black Geoff Old with wife Irene Gottlieb-Old.

Old, who played 17 matches for the All Blacks between 1980 and 1983, has exhibited CTE symptoms for 20 years, including blinding headaches, memory loss, irritability, lethargy and depression.

Gottlieb-Old said she believed the evidence on links between concussion and CTE was clear and clearly seen in her husband. Since the couple had returned to New Zealand from living in Florida, she said Old had enjoyed brighter moments as he reconnected to familiar settings and built social circles. That included building a bond with fellow former All Black Carl Hayman, who played 46 tests for the All Blacks between 2001 and 2007, and has spoken publicly about early onset dementia and its links to his playing days.

“Behind the scenes, it isn’t easy for either of us,” she said. “He’ll get out and shine with friends for a few hours and will then sleep for three days.”

For Old, she said symptoms such as depression were a result of the occasional clarity of his situation. People in his situation, she said, were “living with someone they don’t know - which is themselves”.

Gottlieb-Old said the couple’s experience of ACC was “mind-bending”, involving difficulty progressing claims with speed, finding appropriate professionals acceptable to the agency and an inclination to reject cases.

“With ACC, New Zealanders are put to the test with medical gaslighting.”

Former All Blacks Geoff Old and Carl Hayman, who both believe their brain injuries stem from their playing days, with Old's wife Irene Gottlieb-Old.

The email exchange between ACC and NZR came after a major study published in February in the international neuropathology medical journal Acta Neuropathologica by neuroscientists and other specialists across 13 major neurological and pathology hospitals and universities in the United States.

It said the weight of evidence “suggests a high likelihood of a causal relationship between (repeat head injury) and CTE”. It said it was a finding “strengthened by the absence of any evidence for plausible alternative hypotheses”.

“There is no other common variable, aside than (repeat head injury), that explains why so many contact sports players worldwide, playing diverse sports, have been diagnosed with CTE, while individuals without (repeat head injury) exposure have not.”