Pauline Tully (Cavan-Monaghan, Sinn Fein)

Friday next, 28 June is International Neonatal Screening Day. Can the Minister please provide an update on the roll-out of spinal muscular atrophy, SMA, in the national newborn blood spot screening programme, or the heel-prick test as we refer to it? Will she indicate when she expects the first baby to be tested in Ireland with this potentially devastating disease? The Minister for Health, Deputy Donnelly, has committed to implementation by the end of 2024, but when answering some parliamentary questions, he suggested that we may have to wait until the new lab at the national children's hospital opens before screening can commence. Given the delays facing that project it would be a significant disappointment for Spinal Muscular Atrophy Ireland, the families and the people they represent if this is the case. It is a rare genetic disorder causing muscular degeneration that can be fatal by the age of two but symptoms often do not show until the child is three or four months old. By then, irreversible damage has sometimes already occurred. There are several treatments that can halt the progression of SMA, so early detection is vital.

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