A Tarneit family has launched a petition urging the federal government to make a new drug designed to prolong the lives of about 200 cystic fibrosis (CF) sufferers available through the Pharmaceutical Benefits Scheme (PBS).
Kate and Steve MacPherson’s son, Brody, was diagnosed with CF in December last year at just four weeks old.
He has a rare gene, G551D, that does not allow salt and fluid to flow through his body. The result is a build-up of mucus in his lungs and digestive system.
About 8 per cent of CF patients in Australia, about 200 people, have the gene.
Kalydeco is the only drug found to improve the lung function of these patients.
While Brody is too young to take Kalydeco – it can be used from the age of six – Mrs MacPherson wants to ensure it will be readily available to him and other sufferers.
The drug’s inclusion on the PBS was approved by an advisory committee earlier this year, but its addition to the scheme has been delayed because of financial concerns. The drug costs about $300,000 per patient per year.
“There’s a desperate and urgent need to have Kalydeco added to the PBS without further delay,” Mrs MacPherson said.
“We’re calling on the government to fast-track the approvals process to help all eligible patients with the G551D gene. It’s almost two years since this process started and there’s no end in sight.”
Mrs MacPherson said Kalydeco would provide a normal life to children with CF. “If we can keep Brody as healthy as possible for the next six years, there will be something to help him,” she said.
Sign the petition at www.cysticfibrosis.org.au.
