Government is putting a price on my child’s life, says Tallaght mother
By Mary Dennehy
A TALLAGHT mother’s Christmas wish is for the Government to ‘remove its price’ off her daughter’s life by making cystic fibrosis drug Orkambi available.
Living on the Belgard Road, Siobhan Brophy has expressed outrage over Orkambi, a drug that has transformed the lives of some people with cystic fibrosis (CF), being the subject of a pricing war.
Siobhan, who is part of a parent-led campaign to make Orkambi available, 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 being made available and that the Government is putting a price on my child’s life, it’s disgusting.”
Siobhan’s daughter Saoirse (9), who is a student of Solais Chríost in Belgard, has just arrived home after a two-and-a-half-week stint in hospital.
“How much did Saoirse’s time in hospital cost?” Siobhan asked
“She had a private room, x-rays, bloods and met with nurses, doctors, physiotherapists and she was taking up a bed, and this was just one of many trips Saoirse makes to hospital every year.
“Orkambi can significantly reduce the amount of time that Saoirse is in hospital, alongside giving her a future.
“She’s out of school now recovering and I’m trying to home-school her, while giving her medication on the hour, which includes waking her up at midnight and 6am.
“She’s missing out on an education, her social life, her friends . . . she even missed out on her Christmas end-of-year dancing show.”
She added: “Orkambi can give Saoirse a normal nine-year-old’s life, but instead we’re hoping that Saoirse will be feeling better for Christmas Day and that she’ll be home with us and not in hospital.”
The parent-led campaign for Orkambi recently made a cross-political party presentation alongside taking a stand outside the Dáil on Tuesday.
Siobhan said: “The Minister for Health [Simon Harris] needs to stop looking to Europe for direction on this.
“This is an Irish issue, these are Irish children and, like we did with the smoking ban, the bag levy and same-sex marriage, we need to lead the way.
“Minister Harris needs to look inward, not outward, and make this drug available while pricing negotiations continue.”
When contacted by The Echo, a spokeswoman for the HSE said: “The HSE has undertaken considerable engagement and negotiation with the manufacturer Vertex over a protracted period in an effort to secure a significant price reduction for Orkambi with a view to having it approved for reimbursement for CF sufferers in Ireland.
“To date the drug has been considered unjustifiably expensive and not sufficiently cost-effective by both the National Centre for Pharmacoeconomics (NCPE) and the HSE Drugs Committee.
“The HSE has recently completed its most recent round of negotiations with Vertex. On foot of this, the HSE Drug’s Committee, together with a NCPE recommendation and other expert advice, is in the process of sending its latest recommendation on the cost-effectiveness of Orkambi to the HSE Directorate.
“The HSE Directorate will then make a decision taking into consideration the manufacturer’s latest price offer.”
Orkambi manufacturer Vertex has said that it has engaged with the HSE to reach a funding agreement.
