Stephen Donnelly (Wicklow, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

The expansion of the National Newborn Bloodspot (NBS) Programme is a priority for me, and the National Screening Advisory Committee (NSAC) has been progressing with work on this expansion.

This 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 you will appreciate, these are lengthy and complex processes.

However, 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.

The HSE is now undertaking an extensive body of work to prepare for implementation. Provision for this addition will be included in the relevant HSE service planning processes in line with HSE budgeting procedures.

In relation to Spinal Muscular Atrophy, a HTA on the addition of SMA as an eleventh condition to the NBS programme, is now underway by HIQA. It will provide evidence-based advice to NSAC and will inform a decision regarding the potential inclusion of SMA in NBS Programme. I am advised that the HTA is at an advanced stage, the NSAC expect HIQA to complete this process shortly and that the HTA will be presented to and considered by the Committee at a meeting before the end of this year.

I look forward to receiving a recommendation from the Committee following their consideration of the HTA once it is available.