9 May 2018 - Cystic Fibrosis Canada launched a national campaign in May, which is Cystic Fibrosis Awareness Month, to call on the government to make life-changing medications accessible to those living with cystic fibrosis.
Orkambi (ivacaftor/lumacaftor), developed by Vertex Pharmaceuticals, was approved in the United States in 2015 for cystic fibrosis (CF) patients 12 and older who have two copies of the F508del mutation in the CFTR gene. In the two studies that cleared the safety and effectiveness of Orkambi for approval, the medicine was found to effectively improve lung function and reduce the number of pulmonary exacerbations.
Orkambi potentially could benefit 2,100 of the 4,200 Canadians who live with CF today. Unfortunately, without public funding, many people cannot afford this therapy, despite its approval by Health Canada in January 2016.