Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein) | Oireachtas source

Today, in the audiovisual room, Deputies, Senators and support staff listened, many with tears in their eyes - I was facing them - and unashamed of the fact. They listened to the most heart-rending appeals of parents, children and adult survivors all contending with spinal muscular atrophy, SMA, in their lives. The stories of their lives and the lives of the many others who joined them afterwards at the gates of Leinster House need to be heard by every Deputy and Senator without exception. Along with colleagues from all parties and independent voices, I have been consistently raising the issue of approval of Spinraza for all SMA sufferers. I ask the Tánaiste to note that those who have turned 18 years of age and who have lived beyond childhood are equally entitled to this chance of not only improved life but life itself. This is world Rare Disease Day. It should have been a day of celebration for the 25 children and the 50 people aged over 18 who live with the cruel denial of the ability to live full and active lives. It should have been a day of celebration for their heartbroken parents, their extended families and all who care for them. It would have been if the HSE had approved Spinraza for reimbursement when its senior leadership team met two weeks ago on 14 February, St. Valentine's Day, but it did not. Despite the fact that Spinraza has been approved in 25 of the 28 member states of the European Union, and that its efficacy and effectiveness have been clinically established and demonstrated in a significant number of the cases of people who are accessing the drug, Ireland, with Estonia and the United Kingdom, remains unmoved. Scotland has acted unilaterally within the UK and has approved Spinraza for types 1, 2 and 3. With the UK exiting the European Union, Ireland and Estonia will stand alone as the only EU countries not to face up to their responsibilities to all their children and to those who have survived into adult life.

I am sick and tired of appealing to the Government and the Minister for Health, Deputy Harris, in respect of this issue and so many others. When the Minister and the Department fail to set the policy and fail to instruct the HSE to act in a responsible way on a given issue - and in this instance where the lives of very ill children are at stake - it galls and angers me. Against the almost daily statements of his and the Government's commitment to children's healthcare services and the new national children's hospital, the State is continuing to fail a small cohort of 25 children suffering from a devastating wasting disease. Will the Tánaiste undertake to act now as deputy leader of the Government, as an accountable public elected representative and as a parent?

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