Oireachtas Joint and Select Committees

Wednesday, 15 October 2025

Joint Oireachtas Committee on Health

Treatment of Rare Diseases: Discussion

2:00 am

Professor Michael Barry:

This is an interesting one. We reimburse most of the drugs that are available for spinal muscular atrophy, including Zolgensma, the gene therapy. From our perspective, the reimbursement process is set up and ready. If patients are diagnosed, they get treated. Drugs like nusinersen, or Spinraza, as well as Zolgensma and Risdiplam, are all reimbursed by the HSE. I have nothing to do with the timelines around screening, but I do know it is active. We have been contacted in relation to it. I am just highlighting that this is under way. I do not know the timelines unfortunately. Does Dr. Tilson?