Pádraig O'Sullivan (Cork North-Central, Fianna Fail)

I raise the issue of newborn screening for SMA. During the week, I was contacted by SMA Ireland regarding the continued delay in expanding the heel prick test. The national rare disease strategy recently published by the Minister, Deputy Carroll MacNeill, provides a welcome and comprehensive framework to enhance diagnosis, treatment and support for people living with rare diseases with the stated aim of enabling better health outcomes. As the Tánaiste will know, one in 17 people in Ireland lives with a rare disease. A key element of the strategy, outlined in section 6, is the expansion of newborn screening.

Specifically, it states that in 2023 the then Minister for Health, Stephen Donnelly, endorsed the addition of severe combined immunodeficiency and SMA to the newborn blood spot screening programme. This decision should have brought to 11 the number of conditions screened for at birth in Ireland. Early diagnosis of SMA, as the Tánaiste knows, can mean the difference between a child walking or breathing independently and not doing so or can determine whether he or she requires lifelong support. Treatments are funded and available in Ireland, but without early detection through screening, access is delayed.

The Tánaiste knows that the person mainly responsible for what I am speaking about is a constituent of his. I will not mention him here today. Two years after the commitment made by the former Minister, I urge the Government to provide a binding timeline for when SMA screening will actually be conducted using a heel-prick test.

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