Spinraza for children
Deputy Healy-Rae raises a child with spinal muscular problems benefiting from Spinraza and says other children still need access. The Taoiseach says he is glad the drug is helping and that his position from last week has not changed.
In the programme for Government, there are commitments on health issues, especially regarding children.
Last weekend, a mother brought her small child, Rose, to my clinic. Rose was able to point to her hair, eyes, nose and mouth. A short time ago she could not do that. Rose suffers from a spinal muscular problem and, thankfully, she is on the drug Spinraza which is working very well for her. That is the reason she has some power to move her arms. Sadly, however, there are 25 other children in this country who cannot move their limbs and whose little muscles and limbs are getting increasingly weak. As a medical professional the Taoiseach would be far more knowledgeable about this than me. It is a disgrace that the drug is not being made available to the little children who could benefit so greatly from it. Anything the Taoiseach, the Minister for Health and the Government can do to help those 25 children to be like Rose and to be able to move their hands, point and use their muscles would be important beyond belief.
Comment on this
I am glad to hear that Rose is doing well and that Spinraza is providing benefits for her. I gave an oral answer on this topic last week and it is on the record. The position has not changed since then.