CF patients hope for government action on Orkambi ahead of Dail protest

Fianna Fail has committed to making a ‘final push’ to ensure that patients of Cystic Fibrosis can access the potentially life-saving drug Orkambi.

Fianna Fail TD in Sligo Leitrim Marc MacSharry raised the issue with the Taoiseach in the Dail this week and accused Enda Kenny of being ‘out of date’ on the matter.

It comes ahead of a national protest by CF patients campaigning for the drug outside the Dail next Wednesday.

Aisling Golden the sister of Sligo’s Grainne Golden who died as a result of Cystic Fibrosis in 2016 made a presentation to TDs and Senators in the Dail yesterday.

Grainne’s family still maintain the drug Orkambi could have saved her life.

They are strongly involved in the campaign to have the government fund the drug for CF patients.

However, in response to a query from Fianna Fail’s Marc MacSharry in the Dail this week, Taoiseach Enda Kenny denied that talks between the company Vertex and the HSE had concluded.

The current estimated cost of the drug if the HSE were to fund it is €160,000 per patient per year.

Enda Kenny insists that the decision is not down to him but that the National Centre for Pharmacoeconomics is the independent body who has to make a recommendation on this:

However, Deputy Marc MacSharry insists that the Taoiseach is ‘out of date’ on the status of these talks and he insists the issue needs to be given priority.

He urged the Taoiseach and Health Minister to meet on the matter this week so that next Wednesday’s lunchtime protest outside the Dail could be a positive one instead of one of the ongoing frustration of CF sufferers and their families who feel they are not being listened to:

Fianna Fail leader Micheal Martin attended the briefing organised by deputy MacSharry in Leinster House yesterday and he committed that as leader of the party he would make a final push on the government to try and prioritise this issue.

The protest takes place outside the gates of Leinster House on Wednesday next the first of March at 1:30pm.