Lisa Chambers (Mayo, Fianna Fail) | Oireachtas source

I mean no disrespect to the Minister of State but we expected the Minister for Health, Deputy Harris, to appear in the Chamber to answer questions from me and Deputies Curran and Ó Caoláin.

5 o’clock

He has been on notice since Tuesday when this Topical Issue matter was first submitted. It was a reserved Topical Issue matter yesterday. I live on the other side of the country and I can be here for this debate. We will raise this matter again and demand that the Minister, Deputy Harris, present himself in the Chamber to answer questions. It will be well noted by the families and children waiting that he is not here.

The availability of the drug was announced in June. To date, only three of the 25 children who need Spinraza have received it. The HSE and Minister are fobbing families off and hiding, thinking they will get away with it.

I am helping Grace O'Malley, a child who lives in my constituency. She was told in no uncertain terms that she would have the drug by the end of October and to hold on. She has now been told that she is a special case because of a spinal rod in her back, something which is no fault of her own. She will now have to wait until next year. A new team will be needed and a new service will have to be put in place, and funding will need to be applied for in order to put that service in place. What does it say to a child like Grace who has no control over her ailment that she now has to wait? When will Grace and the other children receive this drug? When will the money be made available? We need a timeline and a date.

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