I welcome the news this evening that the HSE has reached agreement, in principle, with the drug company Vertex for the drugs Orkambi and Kalydeco to be provided to people with cystic fibrosis from the beginning of next month.Orkambi will be provided for patients aged 12 years and older and Kalydeco for patients aged 2-5 years. It is expected that the medicines will be available from the 1st of May.
I have attended a number of meetings organised by the protest groups held at Leinster House in recent months and I congratulate Cystic Fibrosis Ireland and spokespeople like Jillian McNulty who have worked so hard to make this victory a reality. Today’s news will be a huge relief to the 600 people who were waiting on Orkambi to be approved and also the 40 families who were waiting on Kalydeco for their children aged 2 to 5 years.
