Dáil Éireann Debate, Wednesday - 20 March 2024
1280. Deputy Pádraig O'Sullivan asked the Minister for Health the consideration that has been given by his Department for an interim solution to screen newborn babies for SMA and SCID in order to bridge the gap between year-end 2024, given his commitment to the implementation of SMA screening in the heelprick test, and the opening of the new National Children’s Hospital in 2025; and if he will make a statement on the matter. [11874/24]
View answer1281. Deputy Pádraig O'Sullivan asked the Minister for Health the steps his Department is taking to ensure newborn babies are screened for SMA in 2024 as committed to by him, considering the fact that the new lab, to be located in the new National Children’s Hospital, will not be ready until at least Q2 2025; and if he will make a statement on the matter. [11875/24]
View answer1337. Deputy Pauline Tully asked the Minister for Health the steps he is taking to ensure newborn babies are screened for SMA and SCID in 2024 as he previously committed, considering the fact that the new laboratory to be located in the new National Children’s Hospital, will not be ready until at least Q2 2025; if consideration has been given by his Department for an interim solution to screen newborn babies for SMA and SCID in order to bridge the gap between year-end 2024 and the opening of the new National Children’s Hospital; and if he will make a statement on the matter. [12093/24]
View answerI propose to take Questions Nos. 1280, 1281 and 1337 together.
The expansion of the National Newborn Bloodspot Screening (NBS) Programme continues to remain a key objective of mine as Minister for Health, and I am pleased to note that the National Screening Advisory Committee (NSAC) has been actively progressing work in this regard.
NSAC is an independent expert group that considers and assesses evidence in a robust and transparent manner, and against internationally accepted criteria. Its role is crucial in ensuring that Ireland has 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.
Significant progress has been made on the expansion of the NBS Programme since I became Minister for Health. As the Deputy will be aware, last year I approved a recommendation from the Committee for the addition of T-cell receptor excision circle (TREC)-based screening for all types of Severe Combined Immunodeficiency (SCID) and Spinal Muscular Atrophy (SMA) to the NBS programme which will bring the number of conditions screened for as part of what is commonly known as the ‘heel prick’ test in Ireland to 11, once implemented. I would highlight that this will represent a 37% increase achieved under the lifetime of this Government.
Regarding implementation of testing for SCID and SMA, I have written to the HSE requesting that they commence implementation planning. The work has now commenced and officials in my Department will continue to be available to assist the HSE in this regard.
Furthermore, in Budget 2024, I was pleased to allocate €1.4m of new development funding for the expansion of the NBS programme. This funding will allow for the rollout of testing for both SCID and SMA in 2024 and represents a significant increase in a single year. The announcement further demonstrates my ongoing commitment to reducing the impact of these rare but serious diseases in children and infants.
In relation to query on the opening of the National Children’s Hospital, the main contractor has now set out its programme for the completion of the construction and fit-out of the hospital by Q4 2024.
The introduction of screening for SMA and SCID will enable earlier identification and diagnosis, thereby facilitating earlier disease management and treatment. I am acutely aware of how difficult it is for parents, families and children who have received a diagnosis of a rare disease, and how challenging daily life can be for them. Screening will make a real difference to their lives, which is why I am determined to see testing introduced for this condition as soon as possible.
