Robbie Gallagher (Fianna Fail)

Ba mhaith liom fáilte a chur roimh an Aire Stáit go dtí an Teach inniu. The newborn bloodspot screening, NBS, programme, commonly known as the heel prick test, is carried out on babies in their first 70-120 hours of life and currently screens for nine rare but serious conditions. Approximately 120 babies with these conditions are identified per year through this test. However, parents are still calling for the urgent roll-out of the potentially life-changing heel prick test for spinal muscular atrophy, SMA, nearly two years after it was approved for the newborn screening programme. It is estimated that six or seven babies are born in Ireland every year with SMA. If it is not treated, 90% of children born with this most severe type of SMA do not live past their second birthday.

SMA affects the cells in the spinal cord, making muscles weaker and causing problems with movement, breathing and swallowing. It is a rare genetic disease where early detection is crucial because symptoms typically appear at three or four months, when irreversible neurological damage has already occurred.Without early intervention, SMA can be fatal up to the age of two but several treatments are available in Ireland that can significantly alter prognosis if there is early diagnosis. In 2023, the then Minister for Health, Stephen Donnelly, accepted the recommendations of the national screening advisory committee to increase the number of conditions to be screened to include the implementation of early screening for spinal muscular atrophy. However, unfortunately, this has yet to materialise.

Some €1.4 million of new development funding was provided back in 2024 to export the expansion of a newborn screening programme. The funding covered areas such as new equipment, staff, recruitment, validation, quality assurance and training of staff. Recommendations from the NSAC on the addition of spinal muscular atrophy and severe combined immunodeficiency, SCID, to the national newborn bloodspot screening programme, NNBSP, have been approved. I raise this issue today in this House, as I have done on a number of occasions, and I am hopeful the Minister of State will be able to give us some information as to when we can expect this test to be rolled out and in operation.