Here is an opinion piece that was issued by MS Australia ahead of this year’s Federal Budget announcements, setting out what people with MS need from a Federal Budget.
People with MS need a Fair Budget
There are 23,000 people living with MS in Australia. There is currently no known cure for MS and living with the disease is tough. Very tough.
And it’s important that Government understand this. Because people with MS are directly affected by Government policy each and every day.
Last year’s Budget got it horribly wrong in many ways and quite right in others. Allow me to explain:
The planned GP co payment was of genuine practical concern for people with MS who at different stages are all too regular visitors to the GP.
Many people with MS were left asking “why should I have to pay more than other Australians?”
The policy was also quite frankly ‘dumb’ because it presented an obstacle to early diagnosis and so treatment of the disease.
And changing the eligibility criteria for accessing the Disability Support Pension would have been another unfair challenge in an already challenging life. More tests, more assessments, all wasting time and all causing unnecessary angst.
Why were people with MS being asked to bear the budget pain? A question that over the course of the financial year would also morph into: why should people with MS feel budget pain whilst tax evaders seem to enjoying the benefits of Singapore Slings and Double Dutch Irish Sandwiches.
Fair enough too.
And getting this wrong, or not understanding these concerns was what scuttled much of last year’s Federal Budget.
In many ways these problems also betrayed the Government. Put differently, whilst there was a lot wrong with the budget last year, there was a lot right also. A lot of sharp rocks camouflaging a couple of very shiny diamonds.
For example, the planned Medical Research Fund excited the community of people living with MS.
What is largely unknown in Australia is that the scientific community is steadily and painstakingly making breakthroughs in better understanding MS and so ultimately in devising plans to better treat MS. The goal of course is one day to find a cure for MS. A contribution from the Medical Research Fund makes this more likely. It brings this day closer.
It’s was also a Budget right behind the rollout of the National Disability Insurance Scheme (NDIS), of potentially great benefit to people with MS.
These are great positives welcomed by the people I represent.
And so in this year’s edition the Government has to get the balance right. To this end I ask the Treasurer and the Prime Minister to ensure the budget passes the Fairness Test people with MS will be applying.
To be more precise this is what people with MS need from a fair Budget:
- More funding for specialist early intervention and support services. We need to better identify those people with MS best placed to receive early intervention support through, for example, the NDIS. In particular assistance to NDIA planners to recognise the often silent and invisible symptoms that can manifest in significant functional impairment.
- Affordable medicines and funding to expand and streamline the PBS so people diagnosed with MS have access to safe, effective and affordable medicines. A very welcome example was the listing of Lemtrada on the PBS on 1 April 2015 for treating relapsing-remitting multiple sclerosis (RRMS). Previously this treatment cost tens of thousands of dollars and was out of reach for many people with MS.
- ‘Go-Ahead’ funding of new and innovative specialist disability housing in NDIS trial sites. This would be a long awaited development and a big step forward for the NDIS whose lack of funding for housing has been a concern throughout the disability sector.
- No hurdles for the accessing the Disability Support Pension (DSP); and
- A Medical Research Fund for the long term up and running ready to start making those all important research grants.
And so what people with MS want me to say to the Commonwealth is this: Understand that affordable medicine matters, affordable social housing matters, access to medical experts matters, legitimate access to a disability support pension matters and hope for a cure matters.
Understanding these things matters too. Because understanding them means producing a fair budget.
- Debra Cerasa, MS Australia CEO