Jennifer Jury would remortgage her home for a new cystic fibrosis (CF) wonder drug for daughter Ellie-May.
“We would do anything if it meant helping her,” the Jan Juc mother said.
But at $300,000 a year that would only cover treatment costs for two or three years.
“Unless you’re (a) lotto winner – it’s out of reach,” Jennifer said.
Ellie-May, 9, was born with CF, an incurable genetic condition with an average life expectancy of 37 years.
A new drug, Orkambi, could add decades to the lives of 1,300 Australians like Ellie-May, drastically reducing permanent lung damage, medication and hospital visits.
Ellie-May had a few “terrifying” emergency visits after coughing up blood last year, Jennifer said.
“Already before heading to school today she’s done half an hour of nebulizer, physio and taken her daily tablets.”
Her family are anxiously waiting for 17 August, when Federal Government decides if it will subsidise Orkambi through the Pharmaceutical Benefits Scheme (PBS).
The drug’s manufacturer, Vertex Pharmaceuticals, and government were wrangling over costs, putting a value on Ellie-Mays’ life, Jennifer said.
“I’m sure if they had a child with CF they would do whatever they could to make it accessible.”
Ellie-May is avid surfer, netballer and high jumper despite her condition.
“Although sometimes I can’t go as fast as other kids if I’m having a bad day,” the chirpy youngster admitted.
The drug would change her life, she said.
“It will be a lot of pain gone. Why are you making it so expensive for us when it could actually save people’s lives?”
