Fighting for survival – when the personal becomes political ... again!

Australian’s with Spinal Muscular Atrophy (SMA) are fighting for access to the FDA approved drug Risdiplam to be listed on the Pharmaceutical Benefits Scheme (PBS). The drug will be considered at the next meeting of the Pharmaceutical Benefits Advisory Council (PBAC) in March 2021. The medication list price is US$340,000.

As a result, again, parts of my life that are personal become political. I know that to achieve positive change, sometimes you need to talk about things that you don’t want to talk about. It was how we achieved the NDIS. To make a no fault disability insurance scheme a reality in Australia, people with disabilities had to open our lives to the media, to politicians and to anyone else who would listen. We had to get the message across that it was not okay when you’re an adult to rely on your parents to put you to bed, shower you and wipe your bum.

I didn't like doing it then and I'm not enjoying do it now.

But I need the government to do something important and for that to happen, people like me need to bear our souls … again. So here goes…

Over the years, Spinal Muscular Atrophy has progressively taken away my physical abilities. What I have left is valuable, it's precious, and my survival depends on it.

I have a small amount of use of 2 of my fingers and thumbs which makes it possible for me to control my wheelchair and my computer. This very small amount of movement is critical to maintain. It means I am able to work, interact with the outside world and contribute to my community.

As a result of Spinal Muscular Atrophy, I am finding it increasingly difficult to swallow so I have moved to a liquid diet. If I keep getting weaker, and I will without this medication, my only option will be to be fed via a tube inserted into my stomach. The procedure would be very traumatic because I suffer complications from anaesthesia and would need to have the procedure done while conscious.

I need access treatment to maintain my ability to swallow and the small amount of movement in my hands.

The deterioration in my oral muscles has also had an increasing effect on the clarity of my speech and it is getting harder for people, and my voice activated software, to understand what I am saying. The ability to communicate verbally is absolutely vital for me. Verbal communication allows me to interact with the world and to tell people what I need and how to support me. I need access to treatment to keep communicating.

I need access to treatment to continue to talk, work, breath and stay alive. There are hundreds of Australians with SMA who like me need access to Risdiplam.

So there it is. That was the least favourite thing I have had to write. And I am calling on other people with SMA to do the same by sharing their stories on the PBAC website. It's not fun but it's necessary.

You can help by sharing this article, and by connecting me with others who could help raise awareness of this issue.

And please sign and share our petition to health Minister Greg Hunt about the importance of listing Risdiplam on the Pharmaceutical Benefits Scheme (PBS).

Thank you.

Contact: [email protected]