I propose to take Questions Nos. 1338, 1339 and 1424 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 progress continues to be made in this regard.
The National Screening Advisory Committee (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 recommendations from NSAC for the addition 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 the implemented. I would highlight that this will represent a 37% increase achieved under the lifetime of this Government.
Regarding the implementation of testing for SCID and SMA. In November 2023, I wrote to the HSE requesting that they commence implementation planning. This work has now commenced and officials in my Department will continue to be available to assist the HSE in this regard.
Furthermore, I am pleased to allocate €1.4m of new development funding in 2024 to support the expansion of the NBS programme. This funding will allow for the roll-out of testing for both SCID and SMA 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 these conditions as soon as possible.