Protest To Be Mounted Outside The Dail Tomorrow By Cystic Fibrosis Sufferers
It's to highlight the HSE's refusal to fund a Cystic Fibrosis drug which users say has changed their lives
The Cork mother of a teenage boy who has Cystic Fibrosis says she will not rest until her teenage son Evan is given the treatment he needs.
Carol Anne O'Reilly from Belgooly wrote an open letter to the company behind the CF drug Orkambi urging them to hammer out a solution with the HSE on the high cost of the drug for the sake of Evan's future.
CF sufferers say Orkambi, which was licensed over 12 months ago, has changed their lives.
Vertex responded to her saying they have proposed a number of solutions to the HSE and remain hopeful of reaching an agreement in the future and in the meantime have urged the Health Minister to intervene directly.
Speaking on the Neil Prendeville Show on Cork's RedFM Carol Ann says she is trying to remain optimistic for Evan but she believes this drug could help maintain his quality of life
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