It’s a yes.
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Cystic fibrosis campaigners have won a battle to have a drug dubbed a “little pink pill of hope” listed for government subsidy.
An announcement of the listing of Orkambi on the Pharmaceutical Benefits Scheme came late on Friday, with many families hearing about it after the Cystic Fibrosis Foundation livestreamed an announcement.
Without subsidy, the drug costs about $250,000 a year, putting it well out of reach for most families.
Orkambi had been refused a PBS listing on three previous occasions and families were increasingly worried that Vertex, the company which makes the drug, would pull it from the Australian market.
Wagga teenager Bella Ingram, who was able to access Orkambi, through a drugs trial, was one of hundreds of people campaigning to have it listed on the PBS.
After hearing the announcement, Lea Ingram, Bella’s mother, said she and her family was ecstatic.
“To not be able to afford the $250,000 a year for this medication is so frustrating,” Mrs Ingram said.
“To have to tell your child her government doesn’t think her life is worth it is heartbreaking.”
Mrs Ingram paid tributes to the families and their supporters who had been campaigning for the listing.
“Australians living with CF fight every single day for their health,” she said.
Cystic fibrosis a genetic condition which affects the lungs, sweat glands and digestive system.
Bella, 16, said she had noticed an improvement in her health after she started taking the drug.
“I’ve noticed I have a much better appetite, which makes it easier to maintain my weight, and have had less coughs and colds and lung infections,” the Wagga High School student said.
Wagga man Peter Castles, whose grandson has cystic fibrosis, had also been campaigning for the PBS listing.
“I was very keen to see it get this successful outcome,” Mr Castles said.
“This will help a lot of families. It’s great news.
“I’m really glad to see common sense and justice prevail.”
Potentially, the drug could benefit about 1300 people, as it is aimed at the most common mutation of the illness.