2018Advocacyautoimmune diseaseChronic diseaseHealthcareMedical researchMSMultiple SclerosisWorld MS Day

The Roadmap to Defeat MS in Australia (and exciting new stats)

Roadmap to Defeat MS_LadywithMS_Social_800

The Roadmap launched at Parliament House in Canberra

I don’t have much faith in events designed to provide a photo opportunity for politicians, particularly in an election year (as it is in Australia). But last week, on World MS Day, MS Australia and MS Research Australia pulled off quite a coup, and I was lucky enough to be there in my role as National Advocate for MS Australia.

At the launch of the Roadmap to Defeat MS in Australia, Health Minister Greg Hunt and Shadow Health Minister Catherine King supported the MS community in the best possible way.

In a show of bipartisan support, the Government and Opposition committed to holding talks within six months to develop a strategy to implement the Roadmap. Talks are a necessary step (not an automatic delaying tactic) as there are big numbers involved – the Roadmap proposes $30 million over ten years from the Medical Research Future Fund and $5 million from the Commonwealth Primary Health Network.

All of that is rather exciting, as medical research is one of those things that will always require more funding.

And new data about multiple sclerosis in Australia is rather exciting

But as a person with MS, it is another number that stands out in the Roadmap for me.

New data shows that 25,600 Australians have MS.

I was diagnosed four and a half years ago, and the number of Australians with MS did not change from year to year, sitting stubbornly at 23,000 (and it had been there for a while before I was diagnosed as well). This concerned me. Firstly, MS is not in and of itself fatal, and more diagnoses are made each year. Logic suggests the number should go up. Secondly, if the powers that be don’t know how many people have MS in Australia, adequate programs and services will never be provided and the true reach of the disease (and therefore the evidence for more research funding) will not be understood.

Furthermore, if 25,600 Australians have MS, demographic research suggests 7.6 million Australians know or have a loved one living with MS. That is almost 1 in 3 Australians, a statistic which means MS will – hopefully – become less stigmatised and more accepted in time. (And no, I am not glad more people have MS, but I am glad there is better data available about us all).

And there is more good news. The Roadmap is the first document I have seen that outlines a serious commitment to the prevention – yes, the prevention – of MS in the future. This is to be achieved through the development of a vaccine for the Epstein Barr virus, the virus that causes glandular fever (known as mono in the United States) and the virus which almost all people with MS have had prior to diagnosis.

If implemented, the Roadmap represents a necessary step for MS research in Australia, especially as such strategies are only ever as good as the data they are based on.

5 thoughts on “The Roadmap to Defeat MS in Australia (and exciting new stats)

  1. Hi Astrid, this is a great article and a wonderful summary of our event in Canberra on World MS Day 2018. We were delighted to hear the Health Minister say that the Roadmap was exactly what he needed and further delighted with the bi-partisan support from the Shadow Health Minister. We now need to work hard to make the Roadmap a reality and get on with implementation. Thanks again for your involvement in World MS Day 2018 and your ongoing advocacy work for people living with MS.

  2. My 15 yo daughter was diagnosed with RRMS early last year. Pediatric cases of MS are rare in Australia and support for parents and adolescents with MS is hard to find. Please advocate for more resources for kids with MS and clinical trials to help this group. No time is a good time to get a life changing progressive disease but for teenagers and their parents who are coping with raging hormones, high school pressure, social media expectations, MS comes at the worst time crushing their dreams and freedom. Depression is a big problem in this age group and the toll on families (siblings included) is high.

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