Alan Kelly calls for 'absolutely everything' to be done to ensure availability of cystic fibrosis drug

Cystic fibrosis campaigners will hold a protest in Dublin today calling for funding for Orkambi

Irish Water, Alan Kelly, utility, decision, workers, Ervia,

Alan Kelly speaking to the media at Leinster House | Image: RollingNews.ie

Labour's Alan Kelly is calling for everything possible to be done to ensure Orkambi is made available to Ireland's cystic fibrosis sufferers.

Vertex wants to charge the HSE €150,000 a year per patient for the life-saving drug.

Health Minister Simon Harris is set to raise the issue with his European counterparts today at a meeting in Lisbon, while campaigners will hold a protest in Dublin calling on the Government and HSE to fund the drug.

Labour TD and former government minister Alan Kelly revealed this morning he has been personally affected by cystic fibrosis.

Speaking to Newstalk Breakfast, Deputy Kelly said: "Members of my own extended family have passed away from cystic fibrosis, and it is a drug that has had credible results.

"I met with some of the families and some of the people who were on this drug. The results that they have had as a result of using it have been phenomenal," he added.

He also suggested one possible solution is to do a deal with the pharmaceutical company to pay based on success rate.

Cystic fibrosis campaigners, meanwhile, say they will not give up in their fight to secure access to the drug. 

Jillian McNulty says Orkambi has changed her life:

Speaking ahead of today's meeting in Lisbon, Simon Harris said: "Securing access to treatments for patients at an affordable price remains a key priority. However, we cannot have a situation whereby exorbitant prices make it effectively impossible to access new treatments.

"I very much welcome the engagement taking place between EU countries on these issues. The challenges and opportunities in this area are common to all member states.

"I want to ensure that Irish patients continue to have access to new medicines and treatments."