Rare Diseases: Statements
Dail Éireann — 2026-06-18
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Natasha Newsome Drennan (SF), Carlow-Kilkenny

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?

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2026-06-18/debate/main
Retrieved: 2026-08-27T06:54:51+00:00
Sitting date: 2026-06-18