A YOUNG Goornong family is disappointed subsidies for a “miracle” drug have been delayed by up to a year.
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Amelia McCrohan suffers from a rare form of cystic fibrosis that could be treated by the medication Kalydeco.
She has to take 30 tablets, various other medications, and undergo up to an hour-and-a-half of physiotherapy each day.
Kalydeco, which her father Tim said would dramatically improve her life, was deferred a place on the federal government’s Lifesaving Drugs Program.
Cystic Fibrosis Australia chief executive David Jack said a decision to subsidise the drug could take up to 12 months. Mr McCrohan said he was left disappointed by the decision.
“She’d basically have a normal life,” he said.
“Amelia’s medicines, which are very expensive, would be greatly reduced.
“Kalydeco is a disease-modifying drug.
“Effectively it makes the disease disappear while people are on it.”
Cystic Fibrosis Australia stressed a decision from the Pharmaceutical Benefits Scheme had been deferred, not rejected.
“History shows that therapies deferred by the Pharmaceutical Benefits Advisory Committee ultimately end up being approved at a later stage,” Mr Jack said.
Mr McCrohan said he had contacted Labor candidate for Bendigo Lisa Chesters and Liberal candidate Greg Bickley and was waiting to hear back from both.
Ms Chesters said she saw her role as helping people access the government.
“I see my role to Bendigo, if I’m elected, to advocate on behalf of my community and to ensure that people get access to their governments,” she said.
Mr Bickley said the government had cut $2 billion from the Pharmaceutical Benefits Scheme.
