'Orkambi' is said to be the first ever treatment targeting the cause of the condition
The HSE has ruled out funding for a new breakthrough drug for cystic fibrosis sufferers, according to reports.
The Sunday Business Post claims 'Orkambi', which is the first ever treatment targeting the cause of the condition, would cost €92 million each year - representing the equivalent of annual funding for Temple Street Children's Hospital.
The paper reports that Vertex Pharmaceuticals. the company that developed the drug, would look to charge around €160,000 per patient per year for Orkambi. Around 600 Irish patients would benefit from the drug.
Cystic Fibrosis Ireland has called the drug a 'game-changer' which would extend the lives of patients - who rarely live beyond their 40s.
However the head of the HSE, Tony O'Brien, has told the Sunday Business Post, that despite the drug's benefits, there is not enough money to pay for it.
Cystic Fibrosis News Today reports Orkambi is "designed to treat the root cause of cystic fibrosis instead of treating the severity of symptoms".
The US Food and Drug Administration says that in their studies, participants with the condition who took Orkambi demonstrated improved lung function compared to those who took a placebo.
Philip Watt, CEO of Cystic Fibrosis Ireland has said, "we have evidence that Orkambi has had life-changing effects for people on clinical trials who have been in contact with us and who have reported a significant increase in quality of life".