Fianna Fáil TD for Mayo Lisa Chambers has called on the Health Minister to review his decision to outrightly refuse to approve funding for the Cystic Fibrosis drug Orkambi. The medicine, which is reported to have “transformed” the lives of patients, was rejected by Minister Simon Harris on cost grounds.
Deputy Chambers commented, “I am calling on Minister Harris to urgently review this decision, particularly given reports that the manufacturer of the drug is willing to enter into negotiations on price. There have been numerous testimonies from patients about the life changing effect that Orkambi has had on them, and given the fact that CF is so prevalent in Ireland, it is drugs like this one that should be prioritised for funding.
“There are over 50 families here in Mayo who are affected by this decision. One man that I have spoken to has two daughters with Cystic Fibrosis. He’s facing a bill of over €300,000 a year to ensure that his girls can get the drug. That is unsustainable and it is completely unfair to put this sort of financial pressure on families who are simply trying to get the best outcomes for their children.
“I am urging Minister Harris to ensure that further negotiations between the National Centre for Pharmacoeconomics and the manufacturer of Orkambi, Vertex, take place without delay. CF sufferers have been determined to highlight the dramatic improvements in their condition as a result of taking the drug, and I am calling on the Minister to recognise their testimonies and work towards approving HSE funding for this revolutionary medication”.