Wednesday, 6 February 2019
Ceisteanna ar Reachtaíocht a Gealladh - Questions on Promised Legislation
I want to raise an issue with the Minister that I have often raised in this House and which has also been raised by colleagues such as Deputies Aylward and Calleary. It is the plight of 25 children who are suffering from SMA. Their condition deteriorates but there is hope in a drug called Spinraza. We have raised the issue time and again and the Minister has rightly stated that there is an assessment process. However, the families involved feel helpless and believe they are voiceless and have been left behind while the process is ongoing.
They had hoped there would be a resolution to this before Christmas and there has not been. I thank the Minister of State, Deputy Jim Daly, who replied to me previously indicating that a proposal would be brought to the HSE leadership team in February. I need the Minister of State to assure us that this will happen and that a conclusion will be brought to this. Every day one of the few parents contacts me, desperate for a solution to this. It is a small group of people and they genuinely feel voiceless and helpless. I appeal to the Minister of State to ensure the recommendation is brought forward, and perhaps he could indicate when that team is due to meet.