New Cystic Fibrosis medicine added to PBS to benefit patients

Life-changing cystic fibrosis medicine which significantly extends the lives of patients while saving families up to a quarter of a million dollars a year will now be subsidised under the Pharmaceutical Benefits Scheme.

Orkambi will be available on the PBS from 1 October 2018 for all patients over the age of 6 years who have the most the most common form of cystic fibrosis - two copies of the f508del mutation in the CFTR gene.

Federal Member for Pearce Christian Porter said this will provide more than 1,200 Australian patients and their families with a longer and better life.

“Patients would otherwise pay up to $250,000 a year for Orkambi but with the Liberal Government’s investment they will now only pay a maximum of $39.50 per script, with concessional patients paying just $6.40,” he said.

“This is a landmark listing and we know how much it means to the entire cystic fibrosis community.

“This medicine has been out of reach for many Australian families until now.

“It is truly life-changing for so many families and it will deliver joy, happiness and the hope of a better life.”

Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.

A defective gene causes a thick, sticky build- up of mucus in the lungs, pancreas, and other organs.

Orkambi has been shown to slow the rate of decline in lung function and reduce the number of infections in people with cystic fibrosis.

The PBAC is independent of Government by law and in practice.

By law the Federal Government cannot list a new medicine without a positive recommendation from PBAC.