Spinraza for SMA patients
Deputy Aylward pressed for urgent access to Spinraza for children with spinal muscular atrophy, saying families were desperate and the issue was cost. The Minister said the independent drugs approval process was under way and a meeting was scheduled, which she hoped would deliver a positive outcome.
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.
Comment on this
I thank the Deputy for raising this matter because I know many young patients are waiting for a positive outcome on this. We do not need to direct the HSE to do anything because, as the Deputy said, a meeting has been organised. There is a standard procedure for authorising drugs in this country and it is independent of Government and of politics for the very reason that the debate on some drugs can become emotional. We need to take the emotion out of it. The health service needs to deliver for all of our patients as best it can. The Deputy and I are aware that meeting is happening later this week and I wish both parties every success.