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Dáil
‹ An tOrd Gnó - Order of Business

Spinraza for children with SMA

Summary

Deputy Curran said most children with SMA still had not started Spinraza treatment despite a decision the previous year. The Taoiseach said he did not have an update and would ask the Minister for Health to respond.

There is still discrimination against young jobseekers.

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There are a lot of young homeless people as well.

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Pat the Cope Gallagher An Leas-Cheann Comhairle Fianna Fáil

I will take Deputies Curran and Neville and I will take Deputy Michael Collins tomorrow unless it is a fire brigade question. We are just over the time.

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I regret having to raise this issue again. It concerns the plight of 25 children who are suffering with SMA. The Taoiseach will be aware that in June last year, a decision was made that the drug, Spinraza, would be made available for those children. We are almost at the end of the year, six months on, and the vast majority of those children have not started their initial treatment nor have they been given a date for when it will happen. I have met the Minister for Health and his officials and, unfortunately, we have not been given firm dates. The families of those children are looking at their condition deteriorating. Time is of the essence and there is a sense of urgency. Will the Taoiseach work with the Minister for Health to try to give some clarity to when those children will be given a date for initial treatment?

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Leo Varadkar The Taoiseach Fine Gael

I am afraid I do not have an update but I will let the Minister for Health know the matter was raised again today in the Chamber and ask him to provide Deputy Curran with an update.

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