The mother of a 15-year-old girl who tragically lost her battle with cystic fibrosis in May of last year, has called on the Government to reverse their decision not introduce a new drug that could help save the lives of thousands who suffer with the chronic illness.
The distraught woman named Bernie Priestley, mother of Tríona spoke to RTÉ’s Liveline, where she explained that her beloved daughters wish was for CF to stand for Cure Found, and hopes the government will reconsider funding the new drug named Orkambi which has showed positive results in tackling the root cause of the problem. Mrs Priestley told host Joe Duffy of how 1,200 adults and children are “blighted” with the genetic mutation. The emotional mother further explained: “Time might have run out for Triona but the fight goes on. This drug (Orkambi) would absolutely make a world of difference to a number of people living with CF. It would be a life changer for her brother and the many others still suffering from this terrible disease. I’m hopeful the voice of the Irish people will be heard and this drug will be made available.”
Meanwhile Cystic Fibrosis Ireland echoed Mrs Priestley’s calls saying the new effective drug has the “potential to lengthen lives, increase the quality of life and delay the need for transplants”.
However the HSE say the drug which would cost €92 million to provide, “Is not worth the risk as results were only made on objective scientific grounds”.