Campaign flies high for cystic fibrosis

Ivacaftor (Kalydeco, Vertex) is indicated for people aged six or older who have at least one copy of the G551D mutation in the CF transmembrane conductance regulator (CFTR) gene. 

The drug won TGA approval in July last year. Despite a subsequent recommendation from the Pharmaceutical Benefits Advisory Committee (PBAC) for the medication to be listed on the PBS, the government and manufacturer Vertex are understood to be in ongoing negotiations regarding its price. 

Kalydeco costs around $300,000 a year per patient. The cost to the government could be up to $38 million if it is PBS listed. 

This morning’s event, organised by Cystic Fibrosis Australia (CFA), was scheduled to coincide with parliament’s first sitting day of the year. 

CFA CEO David Jack said the flight was designed to highlight the plight of about 200 Australians living with the rare form of CF whose lives could be radically improved by the drug