SPINRAZA, a game-changing drug that dramatically improves motor function for people with spinal muscular atrophy, a debilitating muscle disease, which is the leading cause of death for infants under the age of 2-years-old, is still out of reach for adults in Australia.
Since she was 12-months-old, Ellie Robertson, of Holsworthy, was diagnosed with spinal muscular atrophy, or SMA, but ever since then she’s never let the disease define who she really is.
Ellie is an active member of her community, involved in the active committee of the Liverpool City Council, and is a passionate animal welfare and health advocate. She has also run for the Liverpool City Council, the Federal Parliament and New South Wales State Parliament for the Animal Justice Party and is preparing for another election campaign in March 2019.
Spinraza dramatically improves motor function for people with SMA, and was approved by the Pharmaceutical Benefits Scheme in May 2018, but the Federal Government announced that it was only available to patients under the age of 18.
When she heard the announcement, Ellie said it felt like a slap in the face. “To be told you couldn’t afford a life-changing drug simply because you’re too old was very disheartening,” Ellie said.
Ellie said if she was able to afford Spinraza, which can cost up to $125,000 per dose, her life would improve dramatically.
“I’d be able to scratch my head, and hug someone, that would be really nice. It would also be nice to eat without feeling like I’ve run a marathon,” Ellie added.
SMA Australia CEO Julie Cini believes anyone affected by SMA should have access to Spinraza.
“It dramatically improves their motor control functions and would dramatically improve their livelihoods. The Federal Government has done an incredible job to make the drug accessible to children but more needs to be done for adults,” Julie said.
Julie, who has been leading the fight to place Spinraza on PBS for years, is also encouraging adults with SMA to register to their database so the government can get an accurate number of Australian adults living with SMA so it is appropriately funded early next year.
Ellie believes Spinraza has the chance to rewrite the narrative for so many adults with SMA in Australia.
“By gaining access to Spinraza, I would be able to continue the work that I’m doing, and I’d be able to contribute more to my community whether it’s through advocating for animal welfare or helping out with the council,” Ellie continued.
Ellie is also hopeful of next year’s state election: “I’d really like to be a politician. Nobody ever sees a politician with a disability in parliament and I hope to be able to breakdown those barriers and perhaps provide some inspiration to others,” she added.
To find out more about SMA Australia, or to register to their database, please visit: smaaustralia.org.au