I strongly welcome this debate on rare diseases. Only last week, I had the privilege of welcoming young adults living with Friedreich's ataxia, FA, to Leinster House. Tragically, they are waiting and watching their conditions deteriorate rapidly, not due to the lack of medical progress but due to what I can only call administrative neglect by the HSE. Skyclarys is a breakthrough drug for those over 16 with FA. It is widely used across European public health systems, yet it remains out of reach here. These families have now endured nearly 700 days of anguish waiting for the HSE to decide on the reimbursement. The paperwork was submitted ahead of the deadline for the last meeting. The families have proof but the HSE's response was that while it was submitted on time, it was not opened until after the deadline, and it was, therefore, excluded. What kind of underhand carry-on is this?

Sentiment score: -0.05

Can the HSE simply shut its eyes and pretend it saw nothing? Then we had the Taoiseach stand up here last week and give a different date, adding insult to injury for families already at breaking point. There is no accountability on that side of the House. I have spoken to Emily's family throughout this week. They are devastated. Once again, they have been kicked in the teeth and kicked to the back of the queue. As a mother of four young lads, I find it crippling to see what these parents endure watching their children's health decline while the HSE drags its feet. No parent should have to fight this hard for their child's treatment. Just this week, they got more bad news. The specialist clinic recommended annual visits but, due to resource shortages, it only sees the patients every 18 months. This has now been pushed from August to October. Friedreich's ataxia places immense strain on the heart. Emily's cardiac check-up is now delayed far beyond clinical recommendations. That is simply not acceptable. We need adequate resources for these combined ataxia clinics immediately and we need the Taoiseach to correct the Dáil record on what he said last week and acknowledge the profound hurt he has caused those with FA and their families. They deserve better. They deserve action and they deserve it now. When is the next HSE drug group meeting and will they be included on it? If Skyclarys cannot be introduced fast enough, can there be an interim access where they can get it, whether it is through Europe or if there is another way? Every minute, as the Minister knows, it is debilitating for them.

Sentiment score: -0.19