Lisa Chambers (Mayo, Fianna Fail) | Oireachtas source

I want to raise the issue of Spinraza with the Tánaiste. This is my fourth time raising this issue in the Chamber. Today Grace, an amazing little girl, and her parents came to Leinster House again. They met with Deputy Finian McGrath, the Minister of State with special responsibility for disability issues, and by all accounts it was a good meeting. However, we are still awaiting a response from the Minister for Health, who has simply sent a holding response. He acknowledged receipt of their letter and that was it. There has been no decision. These parents have been waiting week after week for a decision from the HSE as to whether it and this Government will provide their daughter and the other 24 affected children with the medication they need to live and to have some quality of life. Will the Tánaiste endeavour to get a response to those parents and children? For God's sake, I ask him to ask the Minister for Health to get in touch.

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