Dáil Éireann Debate, Tuesday - 13 December 2022
595. Deputy Neale Richmond asked the Minister for Health if his attention has been drawn to reports that Ireland is a laggard in the European Union for the numbers of diseases tested in the newborn heel-prick test; the steps that he is taking to address this; and if he will make a statement on the matter. [61938/22]
View answerI 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 Screening (NBS) Programme is a priority for me.
I am aware of how difficult it is for parents whose children have received a diagnosis of a rare disease, and how challenging daily life can be for them, their families and their children. Advances in technology and treatments for many of these rare but serious conditions are continually emerging, which is very welcome for the families and carers of these children.
Decisions about changes to our national screening programmes, such as the NBS Programme, will be made on the advice of our National Screening Advisory Committee (NSAC). This independent expert group considers and assesses evidence in a robust and transparent manner, and against internationally accepted criteria. It is important 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.
The Committee's first Annual Call in 2021 for proposals for new screening programmes or changes to our existing programmes, received a significant response with over 50 submissions received. Submissions were received from various sources, including members of the public and patient advocates, and have been undergoing consideration by the committee at its scheduled meetings during 2022. The Committee recently published its work programme on its website, and launched its next Annual Call.
Significant progress has been made by the Committee in the past 18 months. Most notably, the NBS Programme was expanded earlier this year and now screens for nine conditions following a recommendation from the NSAC to add ADA-SCID to the Programme.
A number of newborn conditions are undergoing active consideration by the NSAC, and a recommendation regarding further expansion is expected before the end of 2022. The final report from HIQA on its Health Technology Assessment (HTA) for the addition of a tenth condition (SCID), was recently presented to the NSAC at its December meeting. The expansion of newborn bloodspot screening is being continually reviewed across Europe where the number of conditions screened for varies significantly. For example, the UK currently screens for a similar number of conditions (nine) as Ireland.
I look forward to receiving further recommendations from the Committee shortly, and I wish to assure you that I remain committed to the further expansion of screening in Ireland in accordance with internationally accepted criteria and best practice.
