Meet the brave people who fought to give Cystic Fibrosis sufferers a new lease of life

Catherine Shanahan meets some of the people who have fought to make the cystic fibrosis drug Orkambi available in Ireland.

It was a tough and trying time for those with cystic fibrosis (CF) and their families. As the drug that had been shown to change lives won awards around Europe, it remained beyond the reach of CF sufferers on these shores.

Even as a country with the highest incidence of the disease in the world (per head of population), and three times the rate of the US and the rest of the EU, Irish patients could only look helplessly on as other countries reached pricing and reimbursement deals with the makers of Orkambi, the wonder drug recognised as providing “considerable additional benefit” to people with CF who have two copies of the F508del gene mutation.