Motor neurone disease incidence is more than four times the global estimate in western NSW, while researchers have uncovered an unexpected burden among women.
Motor neurone disease is striking people in western NSW at unusually high rates, with new Australian research finding incidence more than four times the latest global estimate and pockets of prevalence reaching almost seven times the expected rate.
The findings, presented at the National MND Conference 2026 in Adelaide last week, have strengthened calls for MND to become a nationally notifiable disease, after NSW introduced mandatory notification.
The first comprehensive population-based study of MND across the Western NSW Local Health District identified 51 people living with or newly diagnosed with the fatal neurodegenerative disease between 2023 and 2025.
Researchers found an age-standardised incidence of 3.72 cases per 100,000 person-years, compared with a global estimate of 0.77 per 100,000. Age-standardised prevalence was 7.50 per 100,000 and mortality 3.40 per 100,000 person-years.
Lead author Dr Amanda Wright, from Charles Sturt University’s School of Rural Medicine and Macquarie University’s Motor Neuron Disease Research Centre, said the research began after she moved to Orange and noticed what appeared to be an unusually large number of cases.
“My first job was as an MND researcher in the research centre with Lyndal [senior author Dr Lyndal Henden] at Macquarie University,” she told The Medical Republic.
“I moved out to Orange to raise my family and started noticing really high rates of MND and thought, I can’t let this go, we need to put together a team and really start to tease this out.”
The study found striking geographical variation. Oberon recorded the highest prevalence, at 23.90 cases per 100,000 people, followed by Walgett at 19.04, while elevated prevalence was also seen in Forbes, Cowra, Orange and Mid-Western LGAs.
No cases were recorded during the study period in several neighbouring LGAs, including Bogan, Cobar and Weddin.
Higher-prevalence areas also overlapped with regions characterised by more intensive agricultural activity, including cropping and modified pasture systems.
But senior author Dr Lyndal Henden, academic lead of MND clinical research at Macquarie Medical School, cautioned strongly against interpreting the geographical pattern as evidence of a local environmental cause.
“We don’t know at this stage. We don’t know why it’s happening and, to be honest, it may not actually be concentrated in this area,” she told TMR.
“It’s just that we don’t have data for other areas in Australia to actually be able to do an extensive analysis.
“That’s why the notifiability is really important, because then we’ll get that data as it starts to come in, and so then we can actually map to see if this is happening elsewhere.”
Dr Henden said the eventual explanation was likely to be complex.
“I believe it’s a combination of the genetics and the environment. But again, we don’t have the right data to be able to answer those questions,” she said.
The study itself stressed that no causal inference could be drawn from the overlap with agricultural land use. Individual genetic, occupational and environmental exposure data were unavailable, while small numbers meant estimates for individual LGAs carried considerable uncertainty.
One of the biggest surprises was who was developing MND – which has become one of the highest profile diseases in Australia at the moment due to high profile professional football players who have died from MND or are currently living with the disease.
These include former AFL player and coach Neale Daniher, who cofounded FightMND and was named Australian of the Year, and who died in May this year; and South Sydney NRL star Jai Arrow, who announced the same month that he was retiring from football due to his MND diagnosis.
But according to the research, women made up 51% of the cohort and had higher incidence, prevalence and mortality estimates than men, although the differences were not statistically significant. That contrasts with the usual male predominance reported in MND.
Dr Henden said the finding immediately stood out.
“When we did see that, because I’ve worked on a number of different datasets or cohorts of people with motor neurone disease, as soon as I saw the proportion of females in this dataset, I knew it was different,” she said.
“It really surprised me.”
The clinical pattern was also unusual. Bulbar-onset MND, which initially affects functions such as speech and swallowing rather than causing limb weakness, accounted for 47% of cases, compared with the 20-30% typically reported.
Among women, 61% had bulbar-onset disease, compared with 33% of men. Women also had shorter median survival than men – 25.6 months compared with 57.6 months – although the study’s relatively small sample meant the findings required cautious interpretation.
Dr Wright said the combination of high incidence and shorter survival among women demanded further investigation.
“In our study, we showed that females have a reduced survival rate compared to men. That’s fairly consistent across the literature,” she said.
“What’s different though is that we have more females. So overall, we’re showing that we’ve got really high incidence – lots of people being diagnosed, but they’re not living very long.”
The researchers hope future work can investigate whether genetic factors or environmental exposures particular to rural communities are contributing.
“There may be a genetic component to that, or there may be unique environmental factors affecting rural populations and rural women as well,” Dr Wright said.
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Geography was already affecting care, they found. Patients travelled an average 139km for their initial neurology consultation, and the average delay between symptom onset and diagnosis was nine months. However, this was shorter than the approximately 13 months previously reported nationally.
“Interestingly, though, we didn’t actually find a time delay for diagnosis,” Dr Wright said.
“We think that our regional health pathways are doing a fantastic job to get these people in for early diagnosis. But the distance that people are travelling for those diagnoses … is a barrier.”
Equity and access had emerged as recurring themes at the Adelaide conference, she said, along with the need for much better data.
“There’s just so much unknown at this stage,” Dr Wright said. “To answer a lot of questions, we need to just be able to generate more data.”
“Where people live … shouldn’t be barriers to receiving healthcare.”
NSW became the first Australian jurisdiction to make MND notifiable this month, creating an opportunity to compare prospectively collected cases with the researchers’ 2023-25 baseline.
Dr Wright said the team now wanted other jurisdictions to follow.
“What we’re advocating for is that we’re seeing populations surrounding the border as well, and we think that obviously this isn’t restricted to NSW,” she said.
“We would really like to see this become nationally notifiable.”
Collecting the data without mandatory reporting was itself a formidable exercise, requiring researchers to piece together information held across multiple services and, in some cases, old paper records.
“I was literally in the basements of New South Wales Health trying to collect this data from paper resources,” Dr Wright said.
“I think that’s what’s probably underappreciated and something we don’t talk about enough – just to get the data alone was enough. So we’re really proud of what we’ve put together.”
The study, Motor neuron disease in rural Australia: a population-based observational study of epidemiology, clinical characteristics and regional variation, has been submitted to BMJ Open and is due to be released as a preprint.
The supplementary analysis reports age- and sex-specific incidence, prevalence and mortality estimates for the western NSW cohort.
Meanwhile, federal health minister Mark Butler has announced a new Pharmaceutical Benefits Scheme listing for Australians living with a type of MND.
From October 1, tofersen (Qalsody, Biogen Australia) will be listed for the first time for the treatment of MND patients with a form of Amyotrophic lateral sclerosis (ALS).
Around 2800 Australians are estimated to be living with motor neurone disease and ALS is a particular disease accounting for up to 90% of MND cases.
ALS is a progressive neurological condition that damages the nerve cells that control muscle movement. Over time, this can affect a person’s ability to move, speak, swallow and breathe, leading to increasing disability and loss of independence.
Qalsody is a targeted treatment for patients with a rare genetic form of ALS. It works by reducing the production of SOD1 protein and offers a new treatment option for patients with limited existing therapies. The treatment may slow disease progression and help patients maintain function for longer.
Around 70 Australians are expected to benefit from this listing each year. Without PBS subsidy, it would cost patients up to $28,600 per script.
This is the second treatment for MND listed on the PBS under the Albanese Government, on top of the establishment of the Neale Daniher National MND Clinical Network, giving more people with MND access to treatment trials.
PBS listing means eligible patients will pay a maximum of $25 per script, or just $7.70 with a concession card.
“MND is a heartbreaking insidious disease that Australians are all too familiar with,” Mr Butler said.
“The listing of Qalsody for ALS on the PBS is a gamechanger for Australian patients.”
Professor Dominic Rowe, head of Neurology and consultant neurologist at Macquarie University Hospital, welcomed the PBS listing.
“MND is one of the most devastating neurological diseases we encounter, affecting not only patients but entire families,” he said.
“Despite advances in care, the impact of MND in Australia continues to grow. For people living with SOD1-ALS, today’s announcement is particularly significant because we now have access to a therapy specifically designed to target the underlying genetic cause of their disease.
“This represents the culmination of more than three decades of research since the SOD1 gene was first identified as a cause of inherited MND.
“Importantly, this reinforces the value of early diagnosis and appropriate genetic testing. Understanding the underlying cause of a person’s disease can help connect patients and families with specialist care, research opportunities and, where appropriate, treatments designed for their specific form of MND.”
Alice Tien, managing director of Biogen Australia and New Zealand, said the listing was a significant milestone for the MND community.
“We welcome the decision to make Qalsody available through the PBS for eligible Australians living with SOD1-ALS and thank the Government for making this important therapy publicly accessible,” she said.
“Its listing reflects years of scientific research and collaboration across the MND community.”
