Cystic fibrosis drug listed on PBS

The PBS listing of ivacaftor will help more than 250 Australians affected by the cystic fibrosis G551D.

Health Minister Peter Dutton said ivacaftor is a new treatment for cystic fibrosis in patients with a specific gene mutation and is the first medicine to treat the underlying cause of cystic fibrosis in these patients.

“The PBS subsidy of this medicine, which would otherwise cost approximately $300,000 a year per patient, will bring great relief to the patients and the families of people affected by this life threatening condition,” Mr Dutton said.

“With this new treatment many patients can experience an improved quality of life with reductions in respiratory and gastrointestinal complications, improved lung function and fewer hospitalisations,” Mr Dutton added.

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.

One of those affected is five-year-old Christian Payne, pictured above. His mother Naomi has campaigned for Kalydeco to be listed on the PBS for years. Every week he takes 150 tablets just to keep going.

“Today marks a very important day for Cystic Fibrosis in Australia. The cystic fibrosis community is beyond thrilled with the listing of Kalydeco,” Naomi told The Weekly.

Although Christian cannot access Kalydeco until he is six-years-old, Naomi says it will make a huge difference to his life.

“Knowing it is on the PBS and ready for him when he turns six means everything to me,” adding, “288 days to go for us, but who’s counting”.

The Government has approved $174.5 million over the next four years to provide ivacaftor on the PBS.

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