The team made the case for the personal benefits for people with MS and the economic benefits of early intervention. To make this case to the appropriate authorities they asked them to take into consideration the growing importance of ‘real-world’ data collected through large registries and databases, together with data from randomised controlled trials assessing the long term impacts of MS therapies.
Arguably, Australia has just as good access to the available therapies for MS as any other country in the world, with 11 treatments currently available and listed on the Pharmaceutical Benefits Scheme (PBS) – thereby great reducing the costs of the therapies to those that need it. Further, Australian healthcare providers have greater freedom to select the most appropriate therapy for a given individual without a rigid framework for trying ‘first-line’ therapies before moving on to try some for the more highly active therapies.
In this respect, access to the full range of currently available treatments for MS is greater in Australia than in many other countries including the UK, New Zealand and many parts of Europe. While access in many other countries including parts of Asia, Africa and the Middle East remains even more challenging.
This means that many Australians living with MS have a greater chance of early access to the optimal treatment for them, protecting their brain health sooner. However, early diagnosis and early intervention still has its challenges despite diagnosis now being 10 times more rapid than was it was in the 1980’s.
The Time Matters in MS initiative, which MS Research Australia has endorsed, sets out some suggested solutions to these challenges. These include;
MS Research Australia, in conjunction with MS Australia, continues to advocate for a greater awareness of these important areas- particularly where policy changes are needed and Australian awareness campaigns could be advantageous.
MS Research Australia will be in Canberra on the 27th of this month to lead discussions on these points with the Department of Health and other important government agencies.
More information on the presentation from The MS Brain Health: Time Matters in MS team to the European Parliament can be found here with links to an important article on the burden of costs associated with MS (in Europe) which correlates well with similar studies done here in Australia. The article also highlights the role the International Progressive MS Alliance is playing in helping to understand progression of MS, the most important factor in determining the greatest burden of direct and indirect costs associated with MS.
MS Research Australia has been actively engaged in supporting research to analyse and accumulate evidence on the ‘real-world’ data relating to outcomes in MS. This includes a previous fellowship to Associate Professor Tomas Kalincik at the University of Melbourne who works with the enormously valuable international clinical MS database called MSBase. Data from MSBase played a large role in the development of the MS Brain Health: Time Matters in MS Initiative. We are also supporting Professor Bruce Taylor of the Menzies Institute for Medical Research, Tasmania, to examine the course of MS in Australia which has had good access to MS medications for many years, in comparison to New Zealand where only recently have people with MS been able to access to a wider range of medications.
Gathering data on the self-reported impact and outcomes for people with MS has also long been a priority, via our support for the long-running, survey-based research platform, the Australian MS Longitudinal Study. The AMSLS has also underpinned several Australian reports on the economic impact of MS with an updated report due to be completed later in 2017.
All of this work is critical to ongoing advocacy to ensure that everyone with MS around the world has the opportunity for timely access to the most appropriate therapies and most effective management of symptoms to reduce the impact of MS and improve quality of life.