Lisa Chambers (Mayo, Fianna Fail) | Oireachtas source

On Thursday, the families, friends and supporters of children suffering with spinal muscular atrophy, SMA, will demonstrate outside the gates of Leinster House to make sure we are all aware of the suffering their children are dealing with. Yesterday, I met one of the children, Cillian, and two of the families in my constituency who are affected by this terrible condition. They know it is a costly drug. They appreciate that there are other demands on Government. They have yet to receive any correspondence or response from the Minister for Health, however, whom they have tried to contact and who has failed to meet or respond to them. I am asking that the Taoiseach relay to him that he might respond to those families. They are also aware that this drug is not only a game changer but will transform the lives of their children. It is clinically effective and has been proven to work. It is available in more than 20 other countries and should be available here. I ask the Taoiseach to contact those families and for his Minister for Health to do the same. I also ask that he approve the drug without delay.

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