Protest over cystic fibrosis drug delay takes place today

Cystic fibrosis sufferers and supporters will converge on the Dáil today to protest at the delay in striking a deal with the manufacturers of a life-changing drug that treats the underlying cause of the disease.

Protest organiser Jillian McNulty, who has CF, said she knows three parents who are remortgaging their homes in order to access Orkambi, which, unless a deal is reached, could cost in the region of €159,000 per annum, for their children.

Prior to Christmas, Health Minister Simon Harris told the Dáil that the National Centre for Pharmacoeconomics (NCPE) considered a price of €30,000 per patient per annum to be more appropriate.