New Zealanders are more likely to die of MND

Trapped inside a body that no longer works, unable to speak, move or, eventually, breathe. People living with motor neurone disease know this is how their life will end, and it is a terrifying fate.

A recent study from the University of Auckland shows that New Zealanders have the highest known rate of motor neurone disease of any country in the world.

Motor neurone disease (MND) is the world’s third most-common neurodegenerative disorder, after Alzheimer’s and Parkinson’s disease. Internationally, an average of 1.67 people per 100,000 die due to MND each year.

New Zealand’s MND mortality rate is as high as 2.8 deaths from MND per 100,0001.

While the difference may not seem great, it means that of the 131 people in New Zealand who are lost to MND every year, 53 of these deaths are unanticipated, due to our rates of MND being higher than the international average.

The cumulative risk of developing MND over one’s lifetime in New Zealand may therefore be even greater than one in 300, the estimated risk internationally2.

The Centre for Brain Research at the University of Auckland analysed data from 2264 people who died from MND between 1992 and 2013.

“We found that that the proportion of people in New Zealand who die from MND is higher than any other country we examined,” says Dr Emma Scotter, head of the Motor Neuron Disease Research Lab, Centre for Brain Research, University of Auckland.

MND is a disease seen more frequently in older people, so the Centre for Brain Research calculations took aging into account. “We know that New Zealand doesn’t have higher MND mortality rates just due to living longer, or having a greater proportion of older people in our population. It’s something other than just an age effect,” says Dr Scotter.

A study in the scientific journal Nature Communications in August 2016 predicts the worldwide incidence of MND will increase 69% by 20403. In New Zealand, this would see at least 221 people dying from MND each year – greater than the number of people who die in car accidents4.

Scotter’s team also found that in Māori, the rate of MND is about half that of the rest of the population, suggesting that Māori may have protective factors for MND – or that there are healthcare disparities that reduce the number of Māori with MND who are diagnosed appropriately.

“We conducted this study as a foundation for our own research on changes in brain cells and brain tissue in MND, and to aid research by others around the country to whom we are connected through the New Zealand MND Research Network,” says Dr Scotter.

“Together we believe we can learn why people in New Zealand develop MND, help in the search towards therapies, and champion for people in New Zealand with MND to have access to such therapies.”

In May 2016, New Zealand-born racing driver Neil Cunningham, a James Bond movie stunt driver who had appeared as The Stig on TV show Top Gear, died of MND. He was 52 and a father of three. In April 2016, British comedian Ronnie Corbett died of MND. In March 2018, Stephen Hawking died of MND.

Global MND Awareness Day is June 21. New Zealand’s MND Awareness Week runs from June 18 to 24.

References:

Motor neuron disease mortality rates in New Zealand 1992-2013, Maize C. Cao, Andrew Chancellor, Alison Charleston, Mike Dragunow & Emma L. Scotter. 2018, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Journal, 1-9. https://europepmc.org/abstract/med/29382218
Amyotrophic lateral sclerosis in an urban setting, Clare A. Johnston, Biba R. Stanton, Martin R. Turner, Rebecca Gray, Ashley Hay-Ming Blunt, David Butt, Mary-Ann Ampong, Christopher E. Shaw, P. Nigel Leigh, Ammar Al-Chalabi. 2006, Journal of Neurology, Volume 253, Issue 12, pp 1642–1643, table 2. http://link.springer.com/article/10.1007%2Fs00415-006-0195-y
Projected increase in amyotrophic lateral sclerosis from 2015 to 2040, Karissa C. Arthur, Andrea Calvo, T. Ryan Price, Joshua T. Geiger, Adriano Chiò & Bryan J. Traynor. 2016, Nature Communications, volume 7, Article number 12408. http://www.nature.com/articles/ncomms12408
Mortality 2015 data tables, Ministry of Health. https://www.health.govt.nz/publication/mortality-2015-data-tables

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