Ceisteanna ar Reachtaíocht a Gealladh - Questions on Promised Legislation
Dail Éireann — 2020-07-23
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Pauline Tully (SF), Cavan-Monaghan

I raise the matter of the drug Spinraza, which was approved in June 2019 for the treatment of spinal muscular atrophy. The roll-out has been very slow as only 12 of 29 children with this condition have so far received treatment. Spinal muscular atrophy is a degenerative disease and these continued delays have a real and psychological impact on children with the condition, who lose a little more motor function every day. Adults are not included in the roll-out of the drug. Will the Government address this matter and ensure all children and adults who need it can receive the drug?

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2020-07-23/debate/main
Retrieved: 2026-08-14T04:48:28+00:00
Sitting date: 2020-07-23