Saoirse (9) tells Health Minister to ‘get a grip’

By Mary Dennehy

A TALLAGHT nine-year-old has advised Health Minister Simon Harris to “get a grip” and to try and understand how “bad it is” having cystic fibrosis, as hundreds of people take their campaign for the approval of Orkambi to the gates of the Dáil.

On Wednesday, cystic fibrosis campaigners descended on the Dáil to highlight the urgency of approving Orkambi, a groundbreaking CF drug which can improve life quality and expectancy.

Siobhan Brophy from Belgard is on a parent committee campaigning for the Irish Government to fund the FDA-approved combination therapy drug, which Siobhan believes will give her daughter Saoirse “a life”.

Siobhan told The Echo: “Children with CF don’t have the time to be waiting for the Government to come to a decision on this.

“I’m outraged that the drug has not yet been made available and that the Government is putting a price on my child’s life – it’s disgusting.”

This week in a statement, Minister Harris said that progress has been made in relation to Orkambi.

He said: “Progress has been made and this process is now entering a critical phase.

“Given the level of investment and the scale of the potential benefits for CF patients, there are important commercial and contractual aspects which have to be agreed on in the interests of patients and the health service overall.

“I am asking for the space for this process to be concluded, with the objective that we can achieve a deal which provides certainty now and in the future.”

While welcoming the Minister’s statement, Siobhan and Saoirse believe that the Government has been given enough space.

Speaking in a video made by The Echo this week, nine-year-old Saoirse said: “The Health Minister better get a grip on himself and bring [Orkambi] in.

“I just want him to see how bad it is having CF and bring [Orkambi] in.”