Spinraza decision for families
Deputy Calleary pressed for a timeline on Spinraza, saying 25 families still had no information after a promised follow-up. The Tánaiste said the assessment process must conclude first and the Minister for Health would respond on timescales.
Two weeks ago, I raised with the Tánaiste the issue of Spinraza, a life-changing drug on which 25 families are waiting for a response. He committed to get back to me but has not done so. More important, the 25 families still have no information as to when a decision will be taken. Even though proposals were submitted to the Health Service Executive, HSE, in July, with a much lower price being quoted, there is still no information available for these families and their children. Will the Tánaiste give an indication of when they can expect information?