Skyclarys for Friedreich’s ataxia
Deputy Newsome Drennan sought a meeting and asked that Skyclarys be on the drugs group agenda for people with Friedreich’s ataxia. The Taoiseach rejected the claim that he had caused hurt, said he wants to help those affected, and noted there is a formal accreditation system.
A month ago, a group of people living with Friedreich's ataxia, along with their families, were present in the Dáil as the urgently needed drug Skyclarys was being discussed on Leaders' Questions. It is important to acknowledge the hurt the Taoiseach caused that day when he gave incorrect reasons for why the drug was not on the agenda at the last HSE drugs committee meeting. The group will make the journey to the Dáil again next Tuesday. Will the Taoiseach and Minister make the time to meet with them? Will the drug finally be on the agenda for the drugs group next Tuesday?
Comment on this
It was the dates you gave.
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One does not cause hurt if one tells the honest position. I was not responsible for whoever built up the expectation that it would be on that meeting. It was never said to me. There are a number of ways we can approach this. My only objective, like most Deputies on this side of the House, is to help those who have Friedreich's ataxia. That is all. I do not try to score political points with other people on issues as serious as this. I have to say that now. On the issue of confirming drug accreditation and so on, there is a system in place, whether one likes it or not. My understanding is the next drugs meeting will deal with this issue. I am not comfortable with the approach that is now being taken that every single meeting of that group will have this level of pressure. That is not great either.
