New report on the human and economic toll of motor neurone disease in Australia
Every moment matters is an evidence-based analysis of the human and economic impact of MND in Australia.
The report, commissioned by MND Australia through an independent health economics consultancy, was developed in collaboration with an expert advisory committee comprising of MND clinicians, leading researchers, and people with lived experience of MND.
The report aims to guide policy decisions that enhance care, support, and quality of life for people living with this progressive, terminal condition and those individuals that care for them.
It provides a comprehensive analysis of MND’s impact and delivers five recommendations to address these challenges and improve outcomes.
Key recommendations
- The Australian Government to establish a nationally consistent funding pathway to fund care and support for people living with MND, irrespective of age
- The Australian Government to fund an integrated MND data strategy and registry (database), 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 Australia 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.
Advocate for change – help us turn the recommendations into action
Watch Sharon and Ron's stories and learn why they're advocating for an MND database, one of the key recommendations from the Every Moment Matters report
Funding for this report was contributed by Biogen and Neurizon. To ensure independence and objectivity, Biogen and Neurizon were not involved in the report's development. All conclusions and recommendations are based solely on independent research and analysis.
