Media release

Every Moment Matters: New report into economic impact of MND

Published: 7July 2025

A groundbreaking new report calls on the Government to address the urgent needs of Australians living with motor neurone disease - a rapidly progressing neurological disease with an average life expectancy of just 27 months from diagnosis.

MND Australia is proud to launch the Every Moment Matters Report: Addressing the human and economic toll of motor neurone disease in Australia.

This national call to action highlights urgent reforms to address systemic gaps and inequities in funding, care, and data collection. These reforms are aimed to improve the lives of everyone impacted by MND through advancing equitable funding, high quality multidisciplinary team care, access to supports and advocacy and research.

Every day in Australia, two people are diagnosed with MND and two lives are lost to the disease. The average life expectancy for people living with MND is 27 months from diagnosis. A third of those die within one year and more than half within two years of diagnosis. There are no known causes for MND, apart from the up to 15 per cent of cases which have a genetic basis.

MND robs people of the ability to walk, speak, swallow, and eventually breathe. With no cure and limited treatment options, the Every Moment Matters report, independently written by Evohealth, outlines the needs of people living with MND, the economic costs and burden of disease costs and sets a clear plan for how the Australian government can step up to meet the needs of people living with MND, their carers and families and research.

It outlines key recommendations to address critical gaps and inequities in funding, care, and support services for people living with MND, their carers and families.

MND Australia are calling for:

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

Currently, there is no consolidated MND data registry in Australia – meaning we don’t truly know how many Australians are living with MND. Data is fragmented across multiple sources, making it difficult for researchers, healthcare professionals, and other stakeholders to access critical information.

An integrated MND data registry is crucial in transforming how MND care and research is conducted in Australia. It will enable stakeholders to make informed decisions, accelerate clinical trials, and ensure people living with MND receive the best possible care.

MND Australia is calling on the Government to support the development, implementation, and ongoing maintenance of the registry. Within two years of the data registry, MND Australia could have enough data on the disease trajectory to help underpin the interventions that are needed to better support those living with MND.

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

A significant barrier to accessing care and interventions for people living with MND in Australia is the inequity in funding for people living with MND, which is determined solely by the individual’s age at the time of diagnosis and application for government funding.

Those diagnosed under 65 years of age are eligible to apply for and access funding support from the National Disability Insurance Scheme (NDIS), which offers comprehensive and flexible funding for care needs in the home. In contrast, individuals diagnosed at age 65 and over receive funding from funded aged care pathways. Under the new Aged Care Act 2024, the primary funded aged care pathway for people living with MND is the Support at Home program. The Support at Home program is designed to support ageing individuals rather than those with complex disabilities.

The highest tier of the Support at Home Program is $77,709, when it comes into effect on 1 November 2025. Even when combined with the funding for assistive technology of $15,000 and $15,000 for home modifications, this combined total of $108,000 is a third of the average NDIS package of $302,000 for a person living with MND. Participant contributions for this funding are dependent on the participant’s income and assets and type of services provided. Until 1 November, the current Commonwealth Home Support Program highest level of

funding is $61,440. This is 20 per cent of the average NDIS package for a person living with MND.

MND Australia is calling for funding for people diagnosed with MND at age 65 or older to be brought into alignment with the average NDIS funding available to MND recipients.

3. National MND Support Program: 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 is calling for sustainable Government funding to support the development and coordination of a National MND Support Program (‘the Program’) which would include services, interventions, and resources that address the unique needs of people living with MND and their carers, that is required beyond the support of the NDIS or funded aged care pathways.

MND Australia will work with the State MND Associations to implement the Program, thereby ensuring consistent access to specialised services and support for all people affected by MND across Australia.

MND Australia CEO, Clare Sullivan, said the Every Moment Matters Report is a turning point for MND care in Australia.

“People living with MND deserve better – better access, better data, and better support. The Every Moment Matters report is more than a set of recommendations; it is a roadmap to dignity, equity, and hope.

We are calling on the Federal Government to act decisively, because time is something the MND community simply does not have.”

MND Australia stands in solidarity with advocates, researchers, carers, and those affected by MND, urging the government to invest in a future where no one faces MND alone.

The Every Moment Matters report can be found at: mndaustralia.org.au/everymomentmattersreport