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

On page 105 of the programme for Government, there is a commitment to ensuring that every young person is enabled to reach their full potential. I have written to the Minister for Health regarding the provision of the drug Spinraza for children suffering from spinal muscular atrophy, SMA. The HSE has acknowledged that the drug works well and it is now solely an issue of cost. Some of the affected families attended a demonstration at the gates of Leinster House last week. One was from my county, Kilkenny. The family is waiting in desperation for an answer on this drug, which will make a significant difference to the life of their young son. Can the Minister instruct the HSE to engage with Biogen regarding the provision of the drug? Can the Minister engage with these families and provide them with an up-to-date status report on the process? I understand the HSE is meeting tomorrow to discuss the drug and now is the time for the Minister to intervene.

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