Medicinal Products
Dail Éireann — 2026-04-29
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Louis O'Hara (SF), Galway East

I appreciate the update from the Minister of State. I cannot emphasise enough the impact the ongoing delays are having on those impacted by the disease. I also call on the drug company to engage in good faith in the negotiations with the HSE. The priority of all parties involved should be delivering this vital medication to the people who need it. Aoife and all of those who suffer from Friedreich’s ataxia want an opportunity to have as good a quality of life as possible. This medication is critical for them. As we speak, people like Aoife are losing their mobility, their ability to live independently and so on. The onus is on the Minister and the Department to ensure that people who suffer from rare diseases are given access to vital medication. The frustration is that we are one of the wealthiest countries in the world and this drug is available in many other European countries. The Minister of State mentioned that the commercial proposal is still outstanding. It has been two years since this process commenced. If she were to put herself in the shoes of somebody like Aoife, she would see how there would be enormous frustration at the delays that are happening here. I urge her to do absolutely everything she can to get this resolved as soon as possible. Every single day matters.

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2026-04-29/debate/main
Retrieved: 2026-09-21T01:01:08+00:00
Sitting date: 2026-04-29