In the lead up to World MS Day this Sunday 30 May, MS Australia hosted a special multiple sclerosis (MS) research and advocacy update with the Parliamentary Friends of MS, live streamed from Parliament House on Tuesday 25 May.
At the event, Parliamentarians, MS researchers, advocates and people living with MS were joined by speakers from MS Australia, including CEO Rohan Greenland and President of the Board, Associate Professor Des Graham, Co-Chairs of the Parliamentary Friends of MS group, Senator Wendy Askew and Senator Deb O’Neill, and MS research experts Dr Julia Morahan and Professor David Tscharke. The speakers highlighted the work being done to improve the lives of people living with MS, as well as bringing to light the importance of connections within the MS community.
President of the MS Australia Board and Chair of its subsidiary MS Research Australia, Associate Professor Des Graham, hosted the event. As a person living with MS, and with over 35 years of experience in the health and human services sector, Associate Professor Graham is drawing on his vast expertise and experience and is determined to make a difference.
Associate Professor Graham reflected on the significance of the World MS Day “Connections” theme and identified World MS Day as the marker to supercharge the MS research agenda. Whilst doing so he called on and challenged the Parliamentary leaders to assist us to end MS once and for all.
In the area of MS research, MS Australia and MS Research Australia have made significant gains over the last 10 years, in particular the past five years, across both searching for a cure, and in improving the treatments and care available to people living with MS.
MS Australia and MS Research Australia are better connected than ever before, providing greater capacity and support to each other, our members, research institutions and our highly engaged volunteers and community.
“Today we know so many of the moving parts of the biology that makes up the MS puzzle”, says Associate Professor Graham.
“We have improved our disease modifying therapies monumentally. We have translated research findings into improved quality of life and improved daily outcomes.”
However, as Associate Professor Graham stresses, the reality is also this:
- We still don’t have a cure, and people with MS still do not enjoy the same quality of life as most Australians.
- In fact, some people living with MS have over a 40% reduction in quality of life than a person without a disability.
- For people with progressive MS, quality of life is similar to or worse than terminal metastatic cancer.
- The annual per person cost of MS is similar to a person with Parkinson’s disease, or the first year following a stroke. And three times higher than for a person with Type 2 Diabetes.
- We still have young people (aged below 65 years) with MS living in nursing homes.
- We do not recognise the enormous physical and emotional burden carers carry in supporting their loved ones.
- The number of people living with MS in Australia increased by just over 20% from 2010 to 2017.
- The annual total costs of MS per person continues to rise at around 17%.
- Of the 25,600 people living today with MS, less than a third have gained entry into the National Disability Insurance Scheme (NDIS).
- The health economic impact of MS was $1.75 billion dollars annually in 2017. A 41% increase from 2010.
Associate Professor Des Graham experiences this reality every day as a person living with MS, but he believes we are on the cusp of something great.
“We have a Prime Minister whose life has been touched by MS, we have two incredible Senators, our [Parliamentary Friends of MS] Co-Chairs, who have the lived experience of family members with MS and we are connected nationally and internationally to the wider MS community,” says Associate Professor Graham.
“It is now more than ever that our aim at MS Australia and MS Research Australia is to supercharge the MS agenda”.
“But we need the Prime Minister, Minister Hunt and Minister Reynolds, and any other decision makers to help us. We need their support,” says Associate Professor Graham.
MS Australia will continue to play its role in raising awareness, advocating, and prioritising our efforts into the treatment, prevention and ultimately a cure for people with MS.
On behalf of the 25,600 Australians living with MS, their family, friends and other carers, Associate Professor Graham feels empowered and can see a hopeful future for the entire MS community.
Watch the recording of the live stream here