Council to invite parents of children with Cystic Fibrosis to address the chamber

Kerry County Council is to invite parents of children with Cystic Fibrosis to address the chamber about the HSE decision not to fund a potentially life-altering drug, Orkambi. Marisa and Hanna It follows a letter from Abbeydorney mother and journalist Marisa Reidy to Health Minister Leo Varadkar about the difference the drug would make to her five-year old daughter Hanna. In the letter Ms Reidy says it is the first drug to ever treat the underlying cause of the condition and is a game-changer for her daughter and so many others who, at present, have a life expectancy of just 30 years of age. She also writes that the drug means that for the first time, she can imagine the possibility of not having to bury her child. Cystic Fibrosis Ireland is seeking a meeting with Health Minister Leo Varadkar to discuss the pressing issue. Cllr Michael Cahill raised the issue in an emergency motion at the December meeting of Kerry County Council saying it was sad the whole thing boiled down to costs, questioning what price do we put on life.