We need a treatment for adults with SMA

Recently PBAC announced that Risdiplam was recommended for those under 18 but not for those over 18. This is great news for children with SMA and their families, but adults are still left with no access to medication in Australia – unlike their peers in the US, UK and Europe.

We are calling on the community for 2 important actions you can take now to help get adults with SMA treatment:

• Biogen has re submitted for Spinraza for the adult population for the July meeting, and consumer comments are again needed by the community wanting access to treatment. Consumer comments are open till the 26th May at the Department of Health website. Even if you have submitted before or would prefer Risdiplam, please make your comments so they definitely know adults want treatment. Ask your friends, families and clinicians to submit also!
• PBAC has said that their decision is based on a lack of data about treatment for adults with SMA and has asked the Australian Neuromuscular Disease Registry for data. We need as many people as possible to get onto this registry, so please visit www.australiannmdregistry.org.au

Together we can make a difference!