Annie Hoey (Labour) | Oireachtas source

I thank Ms McGrath again for her answer. I am looking at my notes, and I see that another person to whom I spoke also told me a treatment that may be available in a few years will potentially cost nearly €500,000 as well. I do not know if that is a generalised figure given to people. I spoke to nine or ten different people with rare diseases ahead of this meeting and it struck me as sad that they felt the way they did in this regard. The responsibility for that being the case lies with those of us in the political system. I refer to a situation where it is known that a treatment for a condition may be available and the people with the condition are willing to do whatever is required because their lives are being affected, and yet they feel that the required political or medical support will not be forthcoming.

I cannot imagine what it would be like to live with that feeling of facing an uphill battle to get support. Ms McGrath spoke eloquently throughout this session about these uphill battles that people face in trying to get recognition and support, or just to be believed. It struck me that it is not good enough that we have people who feel that even if a treatment were to become available, they will not be able to avail of it because of the lack of structural support in Ireland. I apologise for having talked at the witness for this past while. The person whom I mentioned that I had spoken to earlier was extremely supportive of some of the work being done by Rare Diseases Ireland and agreed with its policies. I just wanted the witnesses to know that.