CF sufferer ‘wouldn’t be here’ without cost row drug
A CYSTIC fibrosis sufferer said yesterday she would be dead without a “wonder drug” the HSE claims is too expensive.
Fianna Fail Health spokesman Billy Kelleher addressed the Oireachtas on the need to fund Orkambi as soon as possible.
The Government has started negotiations with the manufacturer Vertex aimed at reducing the cost – €159,000 per patient per year.
The HSE insisted it needs to be brought down to €30,000 to be cost effective but sufferer Jillian Mcnulty said those affected cannot afford to wait a single day.
The 40-year-old, from Longford, added: “I wouldn’t be here if it wasn’t for Orkambi. Realistically, I would be dead.
“Patients with cystic fibrosis don’t have tomorrow, so we need this deal done yesterday.”
Mr Kelleher has urged Health Minister Simon Harris, the HSE and Vertex to work together to resolve the dispute surrounding the drug as quickly as possible.
He added: “What we need now is for meaningful discussions to take place that are time specific – we cannot allow this to drag on for too long.”
Last week Mr Harris said he had written to his counterparts in England, Scotland, Canada and Australia asking them to collaborate to make the drug available to patients at an affordable price. NICKY Byrne has revealed he would not rule out Bertie Ahern swapping politics for the polka to appear on RTE’S Dancing With The Stars.
The 38-year-old former Westlife singer and model Amanda Byram were unveiled yesterday as presenters for the hotly-anticipated series.
And although the secret line-up of celebrity contestants for the first series has been finalised, Nicky said his father-in-law former Taoiseach Bertie could be convinced to throw some shapes in the next season.
He told the Irish Mirror: “I’ll try [to get him to do it] – maybe next year.”
RTE confirmed Dancing With The Stars will kick off on January
8 and it will be the first TV series presented by Nicky since his game show flop The Million Euro Challenge was axed last year.
The dad-of-three admitted he is happy to be working on a programme that has a tried and tested format instead of a new idea.
He said: “I’m delighted I’m presenting a show where I don’t have a mathematical equation to explain.
“Finally, it is a format that’s proven around the world – but it’s [still] not an easy job.
“I loved The Hit but it took a bit of explaining. The Million Euro Challenge was great for me to do on a shiny floor and I enjoyed it. But again it was difficult to explain and just didn’t connect.
“But thankfully that’s not the case with this show.
“I don’t think [RTE] turned around and said, let’s give him something easy.
“They make a decision to make sure the show is a hit. It might not have been me presenting the show but I’m delighted it is.”
Amanda added she believes they landed the gig because of their global profiles.
She said: “We both worked a lot