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

On behalf of Members, I ask the Ceann Comhairle to reflect on the unsuitability and inadequacy of having the Minister of State respond. She is, as she rightly acknowledged, not in a position to expand on the current position. The Minister for Health should be here. He has the same duty to be held as accountable to the House as the Ministers, Deputies Flanagan and Bruton. He certainly never appears in the House whenever I table a Topical Issue matter. The reply the Minister of State has read does not address the serious deficiency in the decision made. It should have included all SMA sufferers. Not everyone who will have the opportunity to access Nusinersen, or Spinraza, its branded name, will respond positively to it, as in the example I gave of the adult American male. One hopes they all will - certainly the 25 children who will now have access to it - show spectacular improvement in their physical condition and life prospects. There is, however, a cohort of adults.

Their number is uncertain but is certainly no more than 50, as has been speculated on time and again. These are people who have survived with SMA from childhood. In many of their cases, the symptoms presented in later life rather than in early years. They are equally entitled to access to Spinraza. The families who are now pleased and who have every right to celebrate because their children have hope are equally vehement in supporting the case for access to Spinraza for all, including the adult cohort. When the Minister of State says the HSE has prioritised this group, this is welcome but it has to include all SMA sufferers. I am not going to labour my point. The voice and intervention of the Minister of State could also be helpful. I ask her to stand with us in this appeal to the Minister, Deputy Harris, to the Government and to the HSE to continue the engagement with Biogen and as speedily as possible to conclude an arrangement for access to Spinraza for all sufferers from SMA across this land.

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