An tOrd Gnó - Order of Business
Seanad Éireann — 2026-07-15
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Teresa Costello (FF), Agricultural Panel

I wish to speak about Skyclarys. Yesterday’s decision was disappointing. Any issue around health should also not be politicised. It is not helpful to patients. Clear and honest information needs to be relayed to patients. I had to speak to one politician who said that strings could be pulled for patients. These already upset people are being used. I have no time for it. There is no space for that in this Chamber.
Yesterday’s decision was disappointing. It is not an outright “No” to Skyclarys. Instead, the HSE has referred it on for further consideration. It means the process is still alive. I am calling on the HSE to set out a clear and urgent timeline for the reimbursement of Skyclarys. People need to know the timeline. Families have already endured an extraordinarily long process. The health technology assessment began in September 2024. The National Centre for Pharmacoeconomics, NCPE, completed its review in December 2025 and commercial negotiations have taken place. Yesterday, instead of reaching a final decision, another stage was added. If it is about pricing, our pricing is in line with other EU countries. We cannot expect to get special treatment in Ireland and undercut everyone else.
Every week matters to a person living with Friedreich’s ataxia. It is a progressive, degenerative disease. Time lost cannot be recovered. Mobility, independence and quality of life continue to decline while this process continues. I appreciate that the HSE has a job of work to do in this regard, and I know the decision yesterday was not a “No”, but it is another wait for people who do not have time. After two years of assessment, review and negotiations, patients need certainty.
The bigger picture is that the process is not working. Decisions should never take this long. Last month, it was Givinostat and this month, it is Skyclarys. It will be something else next month. The process needs to change. I call on the Minister to come into this House because we need a discussion about the reimbursement process, orphan drugs, rare diseases and early access programmes.

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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