MND Australia strives to present a strong national voice representing people living with MND and to collaborate with others on issues that require government, institutional or systemic change through educating, advocating and influencing.
"Irrespective of age, geographical location, or ability to pay, all people living with MND should have access to services they need during their disease progression."
Our Six-Point Plan outlines six initiatives the Australian Government can implement to immediately make a difference to the lives of people living with MND, their families and their carers.
The current difference between the highest level Aged Care Home Care package and an average NDIS package for someone living with MND is close to $180,000 annually.
For the 55% of people who are diagnosed with MND at 65 or older, the Aged Care system does not go anywhere near to addressing their complex and changing disability support needs.
MND Australia recommends the Government urgently:
BUDGET: $200M per year
MND Australia recommends the Government:
BUDGET: $500K per year
MND Australia, as the peak body for MND, has identified a critical need to build and manage a national data asset for MND patients in Australia. Such a resource would enable identification of potential environmental factors, optimally direct clinical and support resources and aid in recruiting patients into clinical trials. This would build on and extend the MiNDAUS Clinical Registry and the SALSA bioregistry. Further, such data will help develop targeted policy outcomes to assist people with MND to live the best lives possible for as long as possible.
A national data asset would lead to tangible outcomes in terms of research, consumer care, integrated government services and better health outcomes for people with MND. Knowledge and understanding of the disease is key to developing better care and new treatments, and the limited data we have constrains this.
Including MND as a notifiable disease would ensure the capture of all MND diagnoses and would support the development of a comprehensive data asset and a robust registry.
BUDGET: $8M over five years
Around 10% of MND is caused by an inherited genetic mutation (familial MND). For families impacted by familial MND, genetic testing enables opportunities for future family planning to avoid passing on the ticking time bomb of known MND mutations.
Genetic screening for MND is now available under Medicare, however, access to genetic counselling, which is a vital part of the screening process, is extremely limited due to low numbers of genetic counsellors
MND Australia recommends the Government:
Currently only one medicinal treatment is available to MND patients in Australia. Other treatments have recently been approved in the US and Europe and over 100 clinical trials are currently underway around the world for new MND treatments. However, none of these new treatments are available in Australia and only a fraction of the trials have Australian participation. With an average survival post-diagnosis for MND patients of only 27 months, access to trials and treatments must also be timely and efficient.
MND Australia recommends the Government enables early access to medicines and expedited access to medical trials for people with MND through:
Neurological conditions affect close to 15% of the world’s population, representing a huge burden on patients, families and healthcare systems. Many neurological conditions share common disruptions of biological processes presenting opportunities to share ideas and co-develop drugs.
MND Australia therefore recommends the Government establish a Neurological Mission within the MRFF.
BUDGET: $100M over five years
