SMA treatment for children
Deputy Curran sought action on treatment for children with spinal muscular atrophy and said families had been waiting too long. The Taoiseach said reimbursement decisions are made independently through the HSE and pharmacoeconomic processes, and that Spinraza had not yet been approved.
While the Taoiseach is in a good mood because of the results in the European elections, he might be able to help me out before he does anything else electorally. I speak specifically of the children with spinal muscular atrophy, SMA. This is raised in this House every week. I am not just speaking on my own behalf because Deputies Calleary, Aylward, Lisa Chambers and Ó Caoláin have raised this also. We are meeting the parents of the affected children. The matter has been on the agenda for a long time. The Taoiseach, as a medical doctor, will realise that the physical condition of the children is deteriorating. The one thing they do not have on their side is time. I have met the affected children in my area. Their condition is deteriorating. In the response, the Minister of State will say negotiations are ongoing under the 2013 Act and that there will be a meeting and the HSE will revert to him. This has gone on month after month and we have not had a positive outcome. If after the next meeting this is not resolved, will the Taoiseach amend the legislation? Ireland is the only country in Europe that has not been able to make what I propose available. If the legislation is impeding what should and must happen soon, will the Taoiseach amend it?
Comment on this
The House made the right decision in 2013 to ensure decisions on which medicines are licensed or reimbursed are not political decisions. I do not believe they should be political decisions. We decided as a House on a cross-party basis in 2013 to allow independent pharmacologists, doctors and economists to make these decisions. A decision is made by the HSE's national drugs committee on the advice of the National Centre for Pharmacoeconomics. So far, 23 new medicines have been licensed for reimbursement this year but Spinraza is not yet one of them. I understand the applicant has made a revised proposal. The applicant was not willing to accept the fair price proposed by the HSE and has made further representations. The HSE is currently considering that information. I hear what the Deputy is saying, however. Very often in Ireland, we fund medicines such as Orkambi long before other countries. The case in question is an anomaly in the sense that we are one of only two countries in the European Union that is not funding the drug. This appears to me to be anomalous and I am keen to see this resolved as soon as possible.