Australians with Spinal Muscular Atrophy need access to Risdiplam

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Australians with Spinal Muscular Atrophy (SMA) are fighting for access to the FDA approved drug Risdiplam to be listed on the Pharmaceutical Benefits Scheme (PBS). We need the government to approve the listing of Risdiplam for all Australians with SMA including adults to stop SMA from continuing to destroy our muscles.

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 my only option would 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 to treatment to maintain my ability to swallow and the small amount of movement in my hands. If I have any increase in strength, that would be a wonderful bonus.

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, breathe and stay alive. There are hundreds of Australians with disability who like me need access to Risdiplam.

I don’t like to dwell on the aspects of my life that are the most difficult. But it’s what I have to do to survive. 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 signing this petition & sharing it with others.

Thank you.