What does Budget 2018 – 2019 mean for people living with MND in Australia?

MND Australia has prepared this response to the national Budget, which was handed down by the Treasurer on 8 May 2018. 

Aged Care
In last night’s budget the government committed $1.6 billion to fund an additional 14,000 high level home care packages over the next four years. This is a much needed investment to help improve access to Community Home Care Packages for older Australians.
Whilst this increased investment in high level packages to assist older Australians to live longer at home is very welcome we remain concerned that people diagnosed with MND aged 65 and older will continue to be forced to wait for services and support to meet their increasing and complex care needs. 

There are currently over 100,000 people approved for a package waiting in a national queue and many more receiving a lower level package than they need. Improved access to high level packages will go some way to improving the lives of people living with MND.  They will, however, continue to fall short of providing sufficient funds for access to the specialist disability support and assistive technology available to people diagnosed with MND under the age of 65 and accessing the NDIS.    

An additional $61.7 million to improve My Aged Care, the gateway to aged care services, and $14.8 million to streamline assessment is also welcomed. It is imperative that this ensures ‘fast track’ access to assessments and services for people with rapidly progressing and complex conditions such as MND. 

There are over 2000 people living with MND in Australia today and 50% will have been diagnosed when aged 65 or older. As outlined in our Position Statement on Aged Care we believe that people diagnosed with MND must have access to early intervention, specialised planning, ongoing expert assessment, complex support coordination, assistive technology and a range of services to meet their needs irrespective of where they live, their age or which sector funds the service.  We will therefore continue our campaign to Make Aged Care Fair and call on the government to ensure that people diagnosed with MND when aged 65 and over are prioritised for assessment and high level packages. Waiting lists are not an option for people with a diagnosis of MND and an average life expectancy of just 2 to 3 years. 

National Disability Insurance Scheme (NDIS)  
MND Australia welcomes the Australian Government’s promise to fully fund the NDIS now and into the future with $43 billion funding secured over the forward estimates period.  

Although we were disappointed to learn that last year’s budget announcement to fully fund the NDIS through a 0.5% increase in the Medicare levy from July 2019 had been scrapped we are heartened that the government has found another way to fund this once in a lifetime opportunity for change. We are hopeful that the present and future governments will stand by the Treasurer’s statement that ‘every dollar and every cent committed to delivering the NDIS will remain in place and always will’.  

We now call on the government to turn its attention to fixing implementation problems and supporting the development and implementation of a clear pathway for people with complex and progressing conditions such as motor neurone disease.  

A fully-funded NDIS gives reassurance and certainty to people diagnosed with MND when under the age of 65 years. As the scheme rolls out nationally we will continue to work with the NDIA and the Government to improve the planning process, implementation of plans and access to specialised assistive technology for people living with MND. We are hopeful that a fully-funded NDIS will ensure the Scheme focuses on the need for specialised planning that takes into account the complex and progressing needs of people living with MND. 

Recognition in the Federal Budget that palliative care should be core business in aged care is very welcome. The Government has committed $32.8 million for specialist palliative care support in residential aged care contingent on matched funding from states and territories. 

Access to specialist palliative care is vital for people living with MND to address their complex and progressing symptoms and to provide much needed psycho-social and emotional support to the person with MND and their families. We call on all governments to support this measure to ensure access to specialist palliative care for people in residential aged care to support quality of life until end of life. 

MND Australia welcomes the provision of $241 million to list the drug nusinersen marketed as Spinraza on the Pharmaceutical Benefits Scheme (PBS) from 1 June for the treatment of Type 1, Type 2 and Type 3a spinal muscular atrophy (SMA) patients under the age of 18. SMA is the number one genetic cause of death in infants. It affects the motor neurones of the spinal cord, causing muscle weakness and wasting. Spinraza is the first and only treatment of its kind to be listed on the PBS for SMA. The Australian Government will also invest $1 million over three years to raising awareness of SMA among General Practitioners, the potential for early diagnosis and the referral pathways available to their patients.

MND Australia congratulates the Federal Government on its continued commitment to health and medical research.

A funding commitment of $6 billion includes $3.5 billion for the National Health and Medical Research Council, $500 million in disbursements from the Biomedical Translation Fund and $2 billion in disbursements from the Medical Research Future Fund (MRFF). A ten year $1.3 billion National Health and Medical Industry Growth Plan for the medical technology, biotechnology and pharmaceutical sectors is expected to create around 28,000 new jobs and give Australians earlier and better access to improved medicines, devices and treatments. 

A $500 million investment in the Genomics Health Futures Mission will be funded through the MRFF over ten years. The Mission aims to monitor and manage risk as well as develop tailored treatments for a range of diseases. The first initiative under the Mission will be Mackenzie’s Mission, a $20 million investment in pre-conception screening for rare and debilitating birth disorders including SMA. It will provide funding and support for patients who face difficult choices in starting a family.  We are hopeful that this will extend to people with a family history of MND who are looking at starting a family. 

Notably, a $240m Frontier Science Program aims to help researchers “thinking out of the box” to develop innovative ideas further. A $248 million injection of funding for international and expanded Rare Cancers, Rare Diseases and Unmet Need clinical trials is also a welcome advance. 
For more information read Research Australia’s Budget Analysis

"We are now at the stage where outcomes of research funded over the last 30 years are advancing our understanding of MND and delivering potential treatments for testing. The only way to change the future for people with MND is through research and continued community and Australian Government investment in health and medical research is vital in moving us closer to the development of an effective treatment to stop MND."   Carol Birks – CEO, MND Australia