An tOrd Gnó - Order of Business
Seanad Éireann — 2026-07-15
============================================================

Robbie Gallagher (FF), Labour Panel

I too would like to raise the urgent case of the approximately 200 people in this country who are living with Friedreich's ataxia. It is a rare and progressive condition that gradually takes away a person's mobility and independence. Unfortunately, there is no cure for this condition but there is hope. The drug Skyclarys has already been approved in the United States back in 2023 and in Europe through the European Medicines Agency in 2024. It is not a miracle cure but it does slow the progression of this devastating disease and that means more time, a better quality of life and hope for the patients and their families.
Yesterday, a number of families affected travelled to Leinster House in the hope they would finally get some good news. The news they have been waiting for patiently is that this drug would finally be sanctioned. Unfortunately, they had to turn around and head home without getting that news. Ten other EU countries have already made this treatment available but Ireland continues to wait while this progressive condition for those who have it continues.
I call on the Minister and the HSE to bring this process finally to a conclusion without further delays. These patients deserve certainty and compassion but, most of all, they deserve access to a treatment that would make such a difference to their lives and the lives of their families. They have been waiting too long. It is time the decision was made. If it has been approved in the US and approved by the European Medicines Agency, I see no reason the HSE in this country would not approve it also.

---

Source: Houses of the Oireachtas. Licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). The Official Report is revised after first publication; the fetch timestamp below identifies the version quoted.

Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/seanad/2026-07-15/debate/main
Retrieved: 2026-08-27T06:52:16+00:00
Sitting date: 2026-07-15