Colm Burke (Cork North-Central, Fine Gael) | Oireachtas source

As I understand it, a total of nine diseases are included in the heel prick test for newborns in Ireland, with approximately 120 babies identified each year as having rare diseases. However, Ireland is falling significantly behind the rest of Europe. For instance, Italy tests for a total of 48 diseases. Countries such as Austria test for 31 diseases, while Poland and Portugal test for 29. In 2023, the national screening advisory committee, NSAC, recommended that severe combined immunodeficiency, SCID, and spinal muscular atrophy be added to the programme. This was accepted by the then Minister for Health, Stephen Donnelly. More than €1.4 million has been allocated to expand the screening programme, yet, two years on, no progress has been made. In Italy, 48 diseases are tested for in newborns. We are doing nine at present. Why is there such a delay in expanding that programme?

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