Motor neurone disease (MND) is a relentless condition that affects about 1 in 300 Australians and gradually takes away the ability to walk, speak, swallow, and eventually breathe.
For Australians diagnosed later in life, MND Australia explains why the government’s latest changes to aged care access can help those who “don’t have time” to wait.
MND progresses rapidly.
On average, patients live around 27 months from diagnosis, but survival can range widely from just a few months to more than a decade. Diagnosis can also take up to 12 months as doctors rule out other conditions.
Associate Professor Shyuan Ngo, an MND researcher at the Queensland Brain Institute at the University of Queensland, said uncertainty clouds the mechanics of the disease.
“The current view is that MND likely arises from a complex interaction between genetic susceptibility, ageing, biological vulnerability, and environmental or lifestyle exposures,” she told The Epoch Times.
However, no single cause has been identified, and only around 10 percent of cases are linked to inherited genetic variants.
Despite being relatively rare, MND affects more Australians than many people realise. According to MND Australia, the lifetime risk of developing the disease is about one in 300.
Amid this uncertainty, the Australian Labor government has announced changes to aged care support for people diagnosed with MND aged 65 and over, automatically classifying them as an urgent priority under the aged care system.
The change means support assessments should now be completed within 30 days, rather than the average nine-month wait period.
“People with motor neurone disease, on average, have 27 months to live from diagnosis,” said MND Australia CEO Clare Sullivan, in an interview with The Epoch Times.
Previously, older MND sufferers were classified as “medium priority” under the system, resulting in longer delays.
The changes cut wait times by about 90 percent and allows patients to live independently at home.
“People with MND want to stay in their homes,” Sullivan said.
She said the timing was significant following the recent diagnosis of former NRL player Jai Arrow and the death of FightMND co-founder and 2025 Australian of the Year Neale Daniher.
“People living with MND don’t have time to wait, they don’t have time for policy change, and they do need special treatment,” she said.
Until Then, Quality of Life and Survival Take Priority
Until a cure is found, treatment remains focused on improving quality of life and extending survival.
Sullivan said innovations such as the more accessible non-invasive ventilation tools, which delivers pressured air into the lungs without the need for a tube.
“Used correctly, it can give you an extra 18 months of life,” she said.
“We need more of those kinds of innovations and interventions that improve quality of life and extend survivability.”
Ngo explained that there are some drugs currently approved for use, including Riluzole and Edaravone, though outcomes vary between patients.
“More recently, Tofersen has become available for people with MND who have a specific gene variant linked to the disease,” Ngo told The Epoch Times.
Despite these advances, researchers say major gaps remain in understanding the disease and developing effective treatments.
Sullivan said greater investment in research and data collection would be crucial to improving diagnosis, identifying risk factors, and developing more effective treatments.
“With better data comes a better understanding of the decline trajectory and the potential causes of the disease,” she said.