Thursday 27 July 2017

Video: 'I prepared for the worst but I still cried'

IT WAS the news she feared the most and, even though she had prepared herself for the worst, Katie Murphy burst into tears.

Ms Murphy (23) is one of the estimated 120 Irish people with the so-called "Celtic gene" that causes cystic fibrosis (CF). She would have benefited from a groundbreaking new drug that has now been deemed "too expensive".

At the age of three, she was diagnosed with the inherited chronic condition of the lungs and digestive system that affects 1,200 people in Ireland.

She and her family have been following the progress of Kalydeco (also known as Ivacaftor) through its early trials over the past five years.

Her older brother, Anthony (26), also lives with CF and has the form of the condition known as G5512 that would benefit from the new treatment.

"I had been mentally preparing myself for the worst but I still burst into tears when I read about it at the weekend," she told the Irish Independent.

"This is the most advanced breakthrough that has ever come about and we've been waiting so long for this," added Ms Murphy, who works as a regional development officer with the Cystic Fibrosis Association of Ireland (CFAI), based in Limerick. "It's the first drug that treats the genetic cause of CF and it offers real hope to people to have a high quality of life and would benefit children before permanent damage is done."

Although she has been devastated by the report by the centre for pharmaeconomics, Ms Murphy says she is determined to fight on to get the drug introduced.

"There can't be a price put on the quality of life. People with CF generally have a hard road, and this is something that has been proven to have an effect on the quality of life," she added.

Majella O'Sullivan

Irish Independent

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