SkyClarys reimbursement
Ken O’Flynn asks why SkyClarys is not reimbursed for children with Friedreich’s ataxia. The Taoiseach says reimbursement follows a statutory process and an unfavourable health-technology assessment, but will continue discussing the case with the Health Minister.
In my constituency a family have already buried one child due to Friedreich's ataxia and their second child is now in a wheelchair due to the same disease, which is advancing. A treatment called SkyClarys is clinically approved and has been shown to slow the progress and the State refuses to reimburse it. Let me be clear: this is not about science or availability; this is about a decision not to fund. What does the Taoiseach say to parents watching their child's disease progress in real time while a treatment exists but is withheld? I want to ask him a direct question. Will he instruct the Minister for Health to fast-track a reimbursement decision for SkyClarys and define the timeframe? Yes or no.
Comment on this
First, it is not a simple decision not to fund. That is not a fair way of putting it. I have spoken to the Minister for Health on this issue. As the Deputy knows, there is a legislative framework governing the reimbursement of medicines, particularly for rare conditions. This is a very sad case with very difficult circumstances for the family. I have spoken to the Minister and I will continue to engage with her this week. I cannot promise anything today. The health technology assessment was not positive in terms of how they do their work. It is an area on which I will come back to the Deputy.