A tale of two systems: Why where you’re born and when you’re diagnosed determines your MND care

The median age at which Australians first develop symptoms of motor neurone disease is 64.

That single statistic sits at the centre of one of the most consequential and least discussed fault lines in Australian healthcare: a one-year age gap that separates patients who receive up to $300,000 in annual support from those who receive a fraction of that, often with devastating consequences.

As World MND Day arrives on 22 June, the aged care and disability sectors find themselves at a crossroads. The recent death of Neale Daniher, the passing of NRL player Carl Webb, and the diagnosis of Jai Arrow at just 30 years old have returned MND to the national conversation with renewed force.

But behind the public grief and the fundraising milestones lies a system that, for many patients, is failing at the moment it matters most.

The NDIS cliff

Australians diagnosed with MND before the age of 65 are generally granted priority access to the National Disability Insurance Scheme, given that the average life expectancy after diagnosis is around 24 months.

For those patients, annual funding can reach $300,000, enabling the intensive, multidisciplinary and often round-the-clock support the disease demands.

Those diagnosed at 65 or older are directed instead to the aged care system, where the highest available Support at Home package sits at around $78,200 per year. A one-off home modification payment of up to $15,000 is also available.

As Professor Dominic Rowe, clinical lead of MND Research at Macquarie University, put it bluntly: “If you’re 64 years, you get $300,000. If you’re 65 years and one day, you get $80,000 in a Level 8 package.”

For a disease that can progress from mild weakness to complete paralysis in a matter of months, that gap is not merely inequitable. It can be catastrophic.

Newcastle man Glenn Rowan was diagnosed with MND in 2022 at the age of 71. He is now 78, fully paralysed in his arms, legs and neck, and spending approximately $7,000 per week on care out of his own pocket.

He has publicly stated that without adequate government support, people in his position will be pushed towards voluntary assisted dying not as a considered end-of-life choice, but as a financial necessity. His own request to access voluntary assisted dying has been accepted.

“Unless someone’s got a good bank account, they’ve got major problems,” Mr Rowan said.

MND Australia chief executive Clare Sullivan confirmed that the funding crisis is not an isolated case. “We’re seeing it financially cripple, if not bankrupt, families all the time,” she said.

The algorithmic problem

Compounding the funding shortfall is the automated assessment tool used under the Support at Home program, which determines aged care package levels through an algorithm.

MND Australia has raised serious concerns about its ability to categorise MND patients appropriately, given the disease’s unique trajectory of rapid, unpredictable deterioration.

“People with MND are generally being assessed at Level 3 or Level 4, or about $30,000 a year in funding support,” Ms Sullivan said. “That’s enough to buy someone to help you get out of bed and have a shower, twice a week.”

Independent Senator David Pocock has echoed these concerns, noting that the algorithm fails to account for the near-certain rapid decline facing MND patients. “There’s no flexibility to actually say, ‘Hang on, this person has MND and they are very likely to see this drastic decline in their motor function,'” he said.

In June this year, the federal government announced a fast-tracked 30-day pathway for MND patients over 65 to access Support at Home funding, acknowledging the disease’s unique characteristics. Sector leaders welcomed the gesture but were clear that speed of access does not address the core issue of inadequate funding levels.

The geography of disadvantage

The NDIS/aged care divide is not the only structural inequity facing MND patients. Where in Australia someone lives shapes their access to care just as powerfully as their age at diagnosis.

Research published in the Medical Journal of Australia this year, drawing on Australian Bureau of Statistics mortality data, found that Australians in regional areas are 40 per cent more likely to die from MND than those in major cities.

Mortality in Tasmania runs 40 per cent higher than in New South Wales. South Australia sits 20 per cent above the national average.

Only four per cent of Australia’s neurologists work outside major metropolitan areas as their primary place of practice. For a disease in which early diagnosis and rapid access to multidisciplinary care are proven to extend survival and quality of life, this concentration of expertise creates a significant barrier for a substantial portion of the patient population.

The researchers are calling for MND to be made a notifiable disease and for a comprehensive national registry to be established.

Currently, Australia relies on fragmented voluntary registries and delayed death certificates. Without systematic data collection, identifying geographic clusters, environmental risk factors and causal mechanisms remains impossible. Without understanding mechanisms, developing targeted therapies is correspondingly harder.

“Calling MND ‘rare’ is not just inaccurate but a dangerous excuse for inaction and apathy,” wrote Dr Carol Lee and Professor Rowe in their MJA article. “A disease killing 800 Australians a year and rising fast, that’s unevenly distributed and largely unexplained should command our complete attention.”

The care model question

Professor Rowe has noted that residential aged care facilities are largely structured around the needs of people living with dementia and Alzheimer’s disease.

MND presents a fundamentally different clinical picture: intact cognition alongside profound physical disability, requiring specialised respiratory support, communication technology, positioning and nutrition management that most aged care settings are not equipped to provide.

For health professionals working at the interface of aged care and disability, this mismatch creates daily practical challenges. Patients with MND can deteriorate far more rapidly than aged care staffing models anticipate. Families frequently step in as primary carers, often without adequate training, respite or financial support.

Access to expert multidisciplinary care, combining neurology, respiratory medicine, physiotherapy, speech pathology, nutrition, genetic counselling and social work, is proven to extend survival and improve quality of life. The evidence base here is not contested. The gap between evidence and implementation, particularly outside major cities, is where the system is falling short.

Reasons for measured optimism

The clinical landscape is shifting, albeit slowly. The Therapeutic Goods Administration has provisionally approved tofersen for the subset of MND patients carrying the SOD1 genetic mutation.

The drug is delivered via lumbar puncture, which carries its own side-effect profile, but in this specific population it meaningfully slows disease progression. It represents the first approved therapy that does more than manage symptoms.

Australian biotech Neurizon Therapeutics is currently running a Phase II/III registrational trial of its candidate NUZ-001 for amyotrophic lateral sclerosis, the most common form of MND.

The company recently passed the halfway point in recruiting its 240 participants, with recruitment tracking ahead of schedule, and this week secured a long-term manufacturing supply agreement with Elanco Animal Health for the drug’s active ingredient. Topline results are expected in the first quarter of 2027.

Broader research is also expanding understanding of the disease’s underlying mechanisms. Scientists are investigating the role of glial cells, microglia and astrocytes in accelerating neuronal death, and exploring how faulty mitochondria may drive the chronic inflammation that causes the disease to progress.

These pathways represent potential targets for future therapies that go beyond symptom management.

Private philanthropy is adding momentum. Earlier this year, Queensland couple Quentin and Kylie Birt donated $40 million to MND research, part of a broader wave of private investment in the field that Neale Daniher’s years of public advocacy helped catalyse.

What the sector needs to push for

For professionals working in aged care, disability and health, World MND Day is an opportunity to advocate for structural change beyond awareness. The key asks are specific and achievable:

MND should be designated a notifiable disease, with a national registry established to enable proper epidemiological surveillance. The NDIS and aged care funding disparity for MND patients needs urgent review, with a mechanism to ensure that diagnosis age does not determine care quality.

The automated assessment tool used under Support at Home needs a clinical override pathway for conditions with documented, predictable and rapid deterioration.

Regional multidisciplinary MND hubs need to be funded so that specialist care reaches patients rather than the reverse. And aged care residential facilities need additional resourcing and training to care appropriately for people with severe physical disability who retain full cognitive function.

Neale Daniher spent more than a decade making the case that MND deserved to be taken seriously. The sector has an obligation to ensure that the system catches up with the momentum his advocacy created.