Oireachtas Joint and Select Committees

Wednesday, 15 October 2025

Joint Oireachtas Committee on Health

Treatment of Rare Diseases: Discussion

2:00 am

Ms Vicky McGrath:

Oh my lord, accountability mechanisms. I was not expecting a question like that. From the patient perspective, we need to move away from the votes and the people on the street and patients having to bare their souls in a public forum. It is very undignified that that is what is happening a lot of the time for people to get access to medicines. The Senator mentioned the spinal muscular atrophy briefing in the audiovisual room, which was heartbreaking. Grown men and women were in tears. We really have to question what is happening there. As a country, we will be held accountable by industry leaving. That is the real risk we run. We have seen what has happened in the last few months, with investments being pulled from the UK in part due to access to medicines and pricing. I fear the same thing will happen in this country. We are desperately trying to attract more innovation into the country to support the healthcare system and provide the tax euro to support it. It is counterproductive that we cannot provide the medicines to people.