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

I agree that the Minister, Deputy Harris, never presents himself to be held accountable by the House. The announcement that Spinraza was to be approved by the HSE should have afforded the families of children living with spinal muscular atrophy, SMA, hope, respite and a chance to plan for the future. Many of the families affected came to Leinster House and stated with great dignity the impact that the denial of Spinraza has had on their lives, and a number have been forced to return.

Since 11 June, the continual denial of Spinraza to many of these children, now perhaps due to administrative and resourcing reasons, is having the same devastating impact on these children and their families. The headline of 11 June is not the endgame. If we are to go on the suggested data that only a small number of children currently have access to Spinraza, quite clearly the Government is failing children with SMA. I want a clear answer as to the number of children currently in receipt of Spinraza and why it is the case that not all of those who are entitled to the opportunity to see if the drug will make a difference in their lives are currently receiving it.

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