Aussie kids given immediate access to life-changing cystic fibrosis drug

Children aged two to five will now have immediate and free access to Kalydeco® (ivacaftor) – a life-changing drug that addresses the causes of cystic fibrosis rather than just the symptoms.

Christian Porter, Federal Member for Pearce, welcomed the news and said previously, only children six years of age and older with the G551D or other class III gating mutations had subsidised access to Kalydeco.

“Expanding access to this vital drug is fantastic news for Australian families. We know that many parents have been worried about how their young son or daughter could get access to this life-changing drug. Now they have it,” Mr Porter said. 

“Without government subsidy, the treatment would cost each patient around $300,000 per year.

“The Australian Government is making sure that this life-changing drug is no longer out of reach for Australian families that need it.”

Cystic fibrosis is the most common life threatening recessive genetic condition affecting young people in Australia. It affects organs such as the lungs and pancreas causing irreversible damage and can cause death. 

By using Kalydeco treatment, many children can experience an improved quality of life with reductions in respiratory and gastrointestinal complications, improved lung function and fewer hospitalisations.

The announcement follows a recommendation from the Pharmaceutical Benefits Advisory Committee (PBAC) that subsidised access to Kalydeco should be extended to children aged two to five years old.

Kalydeco is due to be formally added to the Pharmaceutical Benefits Scheme (PBS) on 1 May 2017. 

Until then, the manufacturer (Vertex Pharmaceuticals) has agreed to provide the drug free of charge for children aged two to five.

From 1 May 2017, the drug will cost $6.30 for all concessional patients and $38.80 for general patients.

The Australian Government has a rock solid commitment to Medicare and part of this commitment is ensuring people have access to medicine when they need it.

Information about medicines subsidised by the Government through the PBS is available at