Life sciences Policy, research + analysis

Every moment matters: Addressing the human and economic toll of motor neurone disease in Australia

July 2025

Every moment matters: Addressing the human and economic toll of motor neurone disease in Australia

Motor neurone disease (MND) is a progressive neurodegenerative condition that disrupts communication between the brain, spinal cord, and muscles. As the disease advances, individuals progressively lose the ability to walk, talk, eat, and ultimately breathe. There is currently no cure for MND, and the average life expectancy following diagnosis is just two to three years.

In 2025, an estimated 2,752 Australians will be living with MND – a number projected to increase to more than 4,300 by 2050.

Despite the severity of the disease and the urgent, escalating needs it creates, Australians with MND continue to face a fragmented and inequitable system of care.

One of the most significant contributors to this inequity is an age-based divide in funding support. People diagnosed before the age of 65 can access the National Disability Insurance Scheme (NDIS), which provides comprehensive and flexible support. In contrast, those diagnosed at 65 or older, who represent the majority of MND cases, must rely on the Support at Home program¹. This program is designed for older Australians with general ageing needs, not those living with complex, rapidly progressing conditions like MND. The maximum level of support available under this program is just 36 per cent of what the average NDIS participant receives.

This funding gap results in a profound inequity. In 2025, 63 per cent of those diagnosed with MND will be aged 65 or over – meaning the majority will receive significantly less support despite having the same urgent care needs. The consequences are far-reaching, limiting their access to services, reducing their independence, and affecting quality of life.

The personal toll of MND is devastating. Individuals face a continual loss of function, autonomy, and identity, often accompanied by anxiety, depression, and uncertainty about the future. The burden also extends to carers, who must manage the physical, emotional, and financial demands of round-the-clock support. Many report exhaustion, emotional distress, and major disruptions to their relationships and employment.

The broader societal cost is also considerable. Evohealth modelling estimates that the total economic and burden of disease cost of MND in Australia will reach $5.02 billion in 2025, rising to $7.51 billion by 2050 if current care models remain unchanged. These estimates account for direct healthcare system costs, productivity losses, the unpaid contribution of informal carers, and the loss of healthy life years.

Every moment matters presents five key recommendations to help close these gaps, improve access to care, and support better outcomes for people with MND and their carers.

The Australian Government to establish a nationally consistent funding pathway to fund care and support for people living with MND, irrespective of age.

The Australia Government to fund an integrated MND data strategy and registry, that supports research and care in Australia.

MND Australia to develop a national directory of healthcare professionals with MND experience, with funding provided by the government.

The Australian Government to fund MND Australia to develop a National MND Support Program targeted at people living with MND and their carers.

MND Australia to work with regulators to develop and implement consistent definitions and practices for terminal illness in superannuation and life insurance policies.

References

Genetic and Rare Diseases Information Centre. Hypophosphatasia 2025; Available from: https://rarediseases.info.nih.gov/diseases/6734/hypophosphatasia.
Fenn, J.S., et al., Hypophosphatasia. Journal of Clinical Pathology, 2021. 74(10): p. 635.
Khan, A.A., et al., Hypophosphatasia diagnosis: current state of the art and proposed diagnostic criteria for children and adults. Osteoporos Int, 2024. 35(3): p. 431-438.
Australian Government – Department of Health and Aged Care. What we’re doing about rare diseases. 2022; Available from: https://www.health.gov.au/topics/chronic-conditions/what-were-doing-about-chronic-conditions/what-were-doing-about-rare-diseases.
Rockman-Greenberg, C., Hypophosphatasia. Pediatr Endocrinol Rev, 2013. 10 Suppl 2: p. 380-8.
Szabo, S.M., et al., Frequency and age at occurrence of clinical manifestations of disease in patients with hypophosphatasia: a systematic literature review. Orphanet Journal of Rare Diseases, 2019. 14(1): p. 85.
Whyte, M.P., et al., Asfotase Alfa Treatment Improves Survival for Perinatal and Infantile Hypophosphatasia. The Journal of Clinical Endocrinology & Metabolism, 2016. 101(1): p. 334-342.
Seefried, L., et al., Burden of Illness in Adults With Hypophosphatasia: Data From the Global Hypophosphatasia Patient Registry. J Bone Miner Res, 2020. 35(11): p. 2171-2178.
Weber, T.J., et al., Burden of disease in adult patients with hypophosphatasia: Results from two patient-reported surveys. Metabolism, 2016. 65(10): p. 1522-30.
Högler, W., et al., Diagnostic delay is common among patients with hypophosphatasia: initial findings from a longitudinal, prospective, global registry. BMC
Musculoskelet Disord, 2019. 20(1): p. 80.
Medicines Australia. HTA and rare diseases. 2022; Available from: https://www.medicinesaustralia.com.au/wp-content/uploads/sites/65/2022/11/HTA-DP-Rare-Disease.pdf.

1 The Support at Home package is still being developed by the Australian Government at the time of printing, 30 May 2025. This report focuses on the Support at Home program as the primary funded aged care pathway for people aged 65 and over living with MND. To ensure clarity and consistency, all future references to aged care funding throughout the report will use the term “Support at Home program” to refer to this package, unless otherwise specified.