Joan Collins (Dublin South Central, Independents 4 Change) | Oireachtas source

A number of weeks ago I raised the concern of the 12 patients aged under 18 awaiting Spinraza. I knew the Taoiseach would be concerned because he was so involved in the campaign last year. I have not heard anything back from his office. I was hoping that he would respond positively. I got a reply to a parliamentary question I tabled along with other Deputies, which stated Children's Health Ireland, CHI, confirmed that it is in a continuous engagement process with families regarding their child's individual plan for the administration of Spinraza. I talked to Lauren from my constituency this morning who raised it with me. There has been no contact. There was a general contact with the advocacy group. I am concerned that I will not be able to raise the issue again for another six weeks. These patients are waiting in pain for their care even to be set up. I ask the Taoiseach to respond.

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