Expansion of the National Newborn Bloodspot (NBS) Programme remains a priority for me as Minister for Health and I am pleased to note that the National Screening Advisory Committee (NSAC) continues to make progress in this regard, as noted by the Deputy.
NSAC is an independent expert group considers and assesses evidence in a robust and transparent manner, and against internationally accepted criteria. It is important that we have rigorous processes in place to ensure our screening programmes are effective, quality assured and operating to safe standards, and that the benefits of screening outweigh the harms. As the Deputy will appreciate, these are lengthy and complex processes.
I am glad to note that significant progress has been made on expansion over the past 18 months. Since May 2022, babies have been screened for nine conditions following a recommendation from the NSAC to add ADA-SCID to the Programme.
Building on this, in January 2023, I approved a further recommendation from the Committee for the addition of T-cell receptor excision circle (TREC)-based screening for all types of Severe Combined Immunodeficiency (SCID) to the NBS programme which will increase the number of conditions screened as part of the screening programme to ten. The Committee made its recommendation to me based on their consideration of a comprehensive Health Technology Assessment (HTA) report from HIQA. HTAs collect and summarises detailed information about new technologies over a range of fields, including clinical effectiveness and safety, cost-effectiveness and budget impact, organisational and social aspects, and ethical and legal issues.
Regarding the Deputy’s question on Spinal Muscular Atrophy (SMA). The HTA on the addition of SMA as an eleventh condition to the NBS programme was discussed in detail at the most recent NSAC meeting on 20 October and I expect to receive a report from this meeting in the near future.
Since assuming office in 2020, I have received regular correspondence from advocates calling for the extension of the NBS programme to cover additional conditions, including SMA. I have read their stories and am conscious of how important this matter is to the children and families affected. I will carefully consider the recommendations from NSAC and issue my decision without delay.
It is important to note that should a decision be made to approve SMA for inclusion in the NBS programme, there will be number of additional steps that need to be followed before we are in a position to formally introduce screening for SMA. My officials will work closely with colleges in the HSE once this process is ready to commence.
