Bobby Aylward (Carlow-Kilkenny, Fianna Fail) | Oireachtas source

I wish to speak on the same issue that my colleague has raised. I have written to the Minister for Health previously regarding the provision of Spinraza for children suffering from spinal muscular atrophy, more commonly known as SMA. I raised the matter previously in the Dáil along with other party members. It has been acknowledged by the HSE that the drug works well and that it is now solely an issue of cost.

Several of the affected families attended a demonstration at the gates of Leinster House in September. One of the families was from my county of Kilkenny. They are waiting in desperation for an answer on this drug. It would make a major difference to the life of their young son. Can the Minister provide an update on the provision of funding for this drug? Has the HSE scheduled any further meetings to discuss this drug? I have raised this before. We have mentioned it several times. We are being told that it is being looked at. It is now time for action not talk.

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