Dáil Éireann Debate, Tuesday - 24 October 2023
610. Deputy Ivana Bacik asked the Minister for Health his plans to commence a screening programme for SKID and SMA; his views on the recommendations of the National Screening Advisory Committee in respect of same; the proposed location for a screening laboratory; and his plans to achieve a standard of screening in excess of forty conditions. [46660/23]
View answerAs Minister for Health, I am fully committed to supporting our population screening programmes which are a valuable part of our health service, enabling early treatment and care for many people, and improving the overall health of our population. 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 to support this.
In this regard, I am pleased to note that significant progress has been made on expansion of the NBS Programme over the past 18 months. Since May 2022, babies have been screened for nine conditions following a recommendation from 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. This 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 summarise 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.
Additionally, and following a request from NSAC in January 2023, HIQA commenced a HTA process to examine the evidence for the addition of Spinal Muscular Atrophy (SMA) to the NBS Programme. This HTA has now been completed and was considered by NSAC at its most recent meeting on 20 October 2023. I look forward to receiving a recommendation from the Committee based on their consideration of the HTA once it is available.
Concerning the proposed location of the screening laboratory. It is my understanding that complex preparations are required for the move of the Newborn Screening Laboratory to the new National Children’s Hospital site at St James, with maintained service delivery. This process is due to commence during 2024.
I fully agree with calls for the expansion of the NBS Programme to include additional conditions and this will continue to be a key policy objective of mine as Minister. However, it is necessary to highlight that NSAC is an independent expert group that 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 and must be afforded the necessary time to complete.
The addition of any new condition to the NBS programme also requires a substantial amount of programme planning and technical laboratory validation and verification before screening can commence.
My Department is conscious of the constantly changing landscape regarding screening and in coordination with the Committee, holds Annual Calls, which invite all stakeholders, including members of the public, HSE and other medical professionals, to make proposals for the introduction of new population-based screening programmes or changes to existing programmes in Ireland. The Committee plans to launch its third Annual Call later this year, and information, including details on the submission process, will be posted on the Committee's website www.nsaccommittee.gov.ie.
