By Cam Lucadou-Wells
A tireless Berwick campaigner is fighting for a government subsidy for a life-saving treatment for the cruel disease Spinal Muscular Atrophy (SMA).
Julie Cini, chief executive of Spinal Muscular Atrophy Australia, is calling for the drug Spinraza to be listed on the Federal Government’s Pharmaceutical Benefits Scheme.
Without a PBS listing, the miraculous treatment is prohibitively costed at more than AUD $1 million for 12 months.
It is the second most expensive drug proposed for the subsidy, but Ms Cini says it is the only hope for SMA children who otherwise have a short life expectancy.
Spinraza wards off the crippling symptoms of SMA that take away a child’s motor function in their legs, arms and eventually their muscles to breathe.
It is an invasive procedure, involving an injection of protein into the spine.
“It’s a life and death choice,” Ms Cini says. “What price can you put on a child’s life?”
Ms Cini’s campaign has been backed by Holt MP Anthony Byrne, who described the disease as the childhood version of Motor Neurone Disease.
“This drug offers hope for those families who currently have no other options for treatment,” Mr Byrne said.
Mr Byrne praised Ms Cini for her tireless work since she founded the charity SMA Australia.
Along the way, Ms Cini lost her two daughters to SMA and her partner in a car accident.
“While most people would be unable to cope with such tragedy and loss, Julie became inspired to help other families so that there would hopefully come a day where they do not have to suffer as she did,” Mr Byrne said.
“I congratulate Julie on her amazing efforts on behalf of all those families with those experiencing Spinal Muscular Atrophy.”
He called on the government to fast-track consideration of the drug to the Therapeutic Goods Administration and Pharmaceutical Benefits Advisory Committee.
Ms Cini said a PBS listing would help fulfil her pledge to her late daughters.
“To see an effective treatment available for those with Spinal Muscular Atrophy, and to be able to give the gift of hope to families makes the countless hours of fund-raising worth it.”
