Heartbroken mother whose daughter 'ran out of time' begs HSE to fund 'wonder' cystic fibrosis drug
The mother of a young girl who passed away moments after Ed Sheeran sang to her has called on the HSE to a reverse its controversial decision to not fund a “life changing” drug for cystic fibrosis sufferers.
Brave Triona Priestley (15) lost her battle with CF minutes after the pop star sang ‘Little Bird’ to her as she lay dying in a hospital bed in May 2014.
The singer later commented on the teen’s passing, writing “Rest in peace Triona, so heartbreaking x” on his Twitter page.
Read More: 'Triona went to sleep with a smile on her face'
Earlier today the young girl’s mother Bernie Priestley told RTÉ’s Liveline that it was Triona’s wish that one day CF would stand for ‘Cure Found’ and called for the HSE to reroll back on its decision to not fund Orkambi – a new cystic fibrosis ‘wonder drug’ that has been shown to be effective at tackling the root causes of the condition.
Some 1,200 adults and children in Ireland are “blighted” with the genetic mutation Ms Priestley said.
“Time might have run out for Triona but the fight goes on. [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.”
Read More: Ed Sheeran singing to our sister was a touching moment we will have for rest of our lives - Triona Priestley's family
Funding Orkambi on the HSE would reportedly cost € 92 million annually - the equivalent of the yearly budget for Temple Street Children’s Hospital.
Some 60 pc of people with CF could benefit from taking the drug however, said Cystic Fibrosis Ireland.
“It has the potential to lengthen lives, increase quality of life and delay the need for transplants.”
Read More: 'Game changer' drug for sufferers of cystic fibrosis will not be funded by HSE - Dáil
Speaking in the Dáil, Taoiseach Enda Kenny defended the decision by the HSE to not fund the ‘wonder drug’, saying: “these decisions are not political – they are made on objective scientific grounds”.
Rounding on Fianna Fáil leader and former Health Minister Michéal Martin, who condemned the Government's failure to sanction the expensive drug, he added: “You’re a great man, Deputy Martin, to talk about vision.”