Written answers

Wednesday, 6 December 2023

Photo of Gerald NashGerald Nash (Louth, Labour)
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159. To ask the Minister for Health if he plans to ensure the integration of spinal muscular atrophy screening in the heel prick test before the end of 2024; and if he will make a statement on the matter. [53924/23]

Photo of Stephen DonnellyStephen Donnelly (Wicklow, Fianna Fail)
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The expansion of the National Newborn Bloodspot Screening (NBS) Programme continues to remain a key objective of mine as Minister for Health, and I am pleased to note that the National Screening Advisory Committee (NSAC) has been actively progressing work in this regard.

Significant progress has been made on the expansion of the NBS Programme over the past 18 months. As the Deputy will be aware, on 26 November I approved the recommendation from NSAC on the addition and Spinal Muscular Atrophy (SMA) to the NBS programme. This will bring the number of conditions screened for as part of what is commonly known as the ‘heel prick’ test in Ireland to 11, once the implemented.

I have written to the HSE requesting that they commence implementation planning for SMA, with work expected to begin on this shortly. Officials in my Department will continue to be available to assist the HSE in this regard.

The introduction of screening for SMA will enable earlier identification and diagnosis, thereby facilitating earlier disease management and treatment. I am acutely aware of how difficult it is for parents, families and children who have received a diagnosis of a rare disease, and how challenging daily life can be for them. Screening will make a real difference to their lives, which is why I am determined to see testing introduced for this condition as soon as possible.

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