Dáil Éireann Debate, Tuesday - 6 December 2022
696. Deputy Josepha Madigan asked the Minister for Health if his Department is considering adding rare diseases, including spinal muscular atrophy. to the heel prick test for babies; and if he will make a statement on the matter. [60937/22]
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.
It is important to be aware that any decisions about changes to our national screening programmes, such as screening for spinal muscular atrophy (SMA), 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.
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 a total of 53 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.
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 conditions, including SMA, are undergoing active consideration by NSAC. A recommendation regarding further expansion before the end of 2022 is expected, when the final report from HIQA on its Health Technology Assessment (HTA) for the addition of a tenth condition (SCID), is presented to the NSAC at its December meeting.
The NSAC has now launched its Annual Call 2022, inviting members of the public and health professionals to make submissions on screening programmes in Ireland. The Committee also published its Work Programme on its website, setting out the proposals currently being considered as a result of last year’s Annual Call.
