I was really pleased to see this on the agenda. It is very important that we have this discussion in the Chamber today because it really matters. On orphan drugs and clinical trials, it is important to have that negotiation power for the leverage we need, and it is really important that we address this on an all-island basis and have an all-island system. We have been looking at this within the Good Friday Agreement as well in terms of an all-island national healthcare system. It is clearly coming through that were we to have an increased population for all of the island, it would make it much easier and much more efficient to have those clinical trials. It is important to note that going out from here today. I want to raise the urgent need for access to Skyclarys. It has been raised many times in the Chamber. I was watching on the screens. There are over 200 people living with Friedrich's ataxia in Ireland. For those diagnosed with this devastating rare condition, this drug represents far more than another medicine. It offers hope for slowing progression, preserving mobility and maintaining independence and giving families precious time together, yet many families in Mayo and across Ireland are forced to watch their loved ones deteriorate while waiting for the decision on funding through the HSE. Every month that passes means a loss of function that can never be regained. Time matters enormously for people with progressive degenerative conditions. Skyclarys was approved by the European Medicines Agency in February 2024 and is available to patients in the US, UK, France, Germany, Austria and other countries. Meanwhile, here in Ireland we continue to lag behind. We rank 23rd out of 27 EU countries for the speed at which we reimburse treatments for rare diseases. That is simply not good enough. Countless families in Mayo and many other places have contacted me directly, pleading for Skyclarys to be approved. One email came from a 32-year-old man who has lived with Friedrich's ataxia his whole life and has been in a wheelchair since he was 17. He and his family should not have to spend their days campaigning, fundraising and begging for access to medicine that could change the course of his illness. Friedrich's ataxia is only one example. Boys living with Duchenne muscular dystrophy who were waiting over a year for a decision regarding givinostat only received the positive news this week that this drug would be reimbursed. I certainly welcome that but there are so many families trapped in similar situations while bureaucratic processes drag on. We need an urgent decision on Skyclarys. Beyond that, we need fundamental reform of the entire medicines approval and reimbursement process. I am glad the Minister has started that but six months is a long time for some of these families.

Sentiment score: 0.14