Irish people living with cystic fibrosis have expressed their disappointment in hearing that the HSE would not be making any provisions to fund a potentially life-altering drug, Orkambi.
One Irish mother Marisa Reidy got in touch with us to explain why the drug would benefit her and her daughter Hanna, in a heartbreaking letter she also shared to Leo Varadkar:
” My five-year-old daughter suffers from CF so this is personal. It is the first drug to ever treat the underlying cause of the condition and is a game-changer for her and so many others who, at present, have a life expectancy of just 30 years of age. Since her diagnosis, I have watched the progress of this drug – from its initial trials to its approval by the FDA – knowing that when it does become available she will finally enjoy the quality of life every child deserves.”
“A life that so many of us take for granted. Instead of battling persistent, dangerous chest infections – each one causing permanent lung damage and shortening her life – she will breathe easy for the first time and go on to live a relatively normal life. This drug means that for the first time, I can imagine the possibility of not having to bury my child – a terrifying reality I currently face.”
The HSE had made a statement regarding the drug last Sunday.
Cystic Fibrosis Ireland is seeking a meeting with Health Minister Leo Varadkar to discuss the pressing issue.
In a letter to Mr Varadkar, the organisation stated: “This statement has caused considerable anxiety among the CF population in Ireland. Around 60% of people with CF in Ireland stand to benefit from this drug which is effective for the most common CF gene alteration in Ireland, which is Delta F508.”
“The drug has the potential to lengthen lives; increase quality of life and delay the need for lung transplantation. We know this from first hand as Irish patients have been part of the trials for this important drug. ”
Lead Image courtesy of Marisa Reidy.