He didn’t respond to any treatment he tried.

By BRENDA FISHER

It can be a rare and wonderful thing to find your soul mate, I consider myself one of the lucky ones.

In 1985 at the age of 20, I did just that. Mark was a surfer and played State League Water Polo. We had one of those immediate connections and were married the following year. Three children later and in December of 1994, Mark finally got his dream job and shortly after we moved our family to Sunbury where Mark began his new career at Tullamarine Airport. It seemed life was just getting better and better for us, our goals and dreams were getting bigger and we could see life was just going to be amazing.

Then the turbulence that was going to become the centre of our lives began, after going to hospital for tests due to falls and constant unusual fatigue Mark was given the diagnosis of Multiple Sclerosis. Actually what our doctor said was “Some of the tests came back with inconsistent results but we are happy to call it Multiple sclerosis!”

I’m sorry, but I was certainly not happy that you called it MS!

This was the 17^th April 1996, 7 days before Marks 34^th birthday; our children were then 7, 4 and 2 years old. All of our sudden our dreams and goals seemed so much further away.

Mark and I are both independent people so life continued as normally as could be, Mark was constantly trying new drugs, some were pills and some injection which I helped with. We also became increasingly involved in the MS community and decided to become Ambassadors for MS Australia (ACT/NSW/VIC) and Peer Support volunteers. Our role was to talk to people affected by MS and share our experiences and coping mechanisms.

During this time it became all too obvious that Mark didn’t respond to any treatment he tried. What’s more, he wasn’t experiencing the periodic ‘attacks’ that so many others with MS experience. That’s when we found out Mark had an aggressive form of MS called Progressive MS and we were told that there was nothing – not one drug on the market for Progressive MS.

That changed for us in December of 2012 when we found out about a drug called Fampyra. Fampyra had been available for a short while and we learnt about it when it was rejected by the Federal Government for  inclusion on the PBS. After investigating the treatment I found it could assist with symptoms of all forms of MS, including Progressive MS, specifically mobility impairment.

But there was a catch. Without subsidisation the drug cost $585 for a 28 day course. A price we just couldn’t afford.  I felt so cheated!  Here it was. The first drug in the 150 year history of MS that could help those with Progressive MS and it was out of our reach.

So I decided this wasn’t good enough and I started a petition. It had a simple goal, to gather 10,000 signatures so that the issue of FAMPYRA and its subsidisation could be debated in Parliament.

Through the use of social media, in particular a Facebook group as well as petitions left at local shops and offices the petition started gathering momentum. I was surprised and excited that so many people in the MS community got behind it and slowly but surely the signatures started coming in.

Last week, after 12 months since starting the petition, I met with Victorian Senator Scott Ryan and handed over 10,503 signatures supporting the subsidisation of FAMPYRA on the PBS. Senator Ryan has kindly offered to table the petition in the Senate which is so exciting.

It’s been nearly 18 years since Mark’s diagnosis. During that time he has progressed and this progression has become quite severe recently. At the end of the day what motivated us to keep moving forward with the petition was to try and help others avoid what we have had to go through. The amount of support I have received with this is overwhelming and I am so grateful. I was surprised but also encouraged that people are so passionate about this and I now I truly hope that that our voices are heard!

Brenda Fisher is a mother, carer and MS advocate from Sunbury in Victoria. She is the primary carer of her husband Mark who has been living with Progressive MS for more than 18 years.

MS Australia is the national peak body representing the 23,000 Australians living with MS across the country. For more information on MS Australia and services offered in your state visit www.msaustralia.org.au 

The public submission period for the March PBAC agenda is open until February 12. Brenda is encouraging anyone with an experience with Fampyra to make an online submission here.