Rare-disease charity awarded

Julie Cini and Anthony Byrne, middle, flanked by parents and children lobbying for the PBS listing.

By Cam Lucadou-Wells

Hallam-based charity SMA Australia has been awarded for its life-changing advocacy efforts at the Holt Australia Day Awards.

The organisation provides care for Australians living with spinal muscular atrophy (SMA), a fatal and debilitating muscle disease.

It’s the leading cause of death for infants under 2.

In May, the group successfully lobbied for the life-saving drug Spinraza to be made more affordable under the Pharmaceutical Benefits Scheme (PBAC).

As a result, the treatment is available under the PBAC for those with Type 1, 2 and 3A SMA under the age of 19.

SMA Australia chief executive Julie Cini said she was determined to ensure adults also could get access to the treatment in future.

“I will not stop fighting until I achieve this goal.

“SMA is a deadly and debilitating disease, but in the year 2019 why shouldn’t treatments for diseases be accessible to those who want a good quality-of-life.”

Ms Cini has lost two children Montanna and Zarlee to the disease.

She says more education of maternal child nurses and GPs would ensure quicker diagnosis and treatment for patients.

Holt MP Anthony Byrne who instigated the annual Holt Australia Day Awards was an instrumental supporter of getting Spinraza on the PBAC.

He presented SMA Australia with the award at Hampton Park on Australia Day.

“Receiving this award is a boost to our confidence, that someone outside our community recognises our hard work,” Ms Cini said.

“We’re all very humbled to accept this award but our focus of all those who chose to access treatment in Australia stays the same for those living with SMA.”

 

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