Dáil Éireann Debate, Wednesday - 24 April 2024
177. Deputy Róisín Shortall asked the Minister for Health when testing for severe combined immunodeficiency and spinal muscular atrophy will commence under the National Newborn Bloodspot Screening Programme, following the announcement of additional funding to expand the programme in February; and if he will make a statement on the matter. [18223/24]
View answerThe expansion of the National Newborn Bloodspot Screening (NBS) Programme continues to remain a priority 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 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 both conditions, I can confirm that work commenced at the start of this year, with ongoing collaboration between officials in my Department and the HSE National Children’s Screening Programme on implementing an ambitious timeline for the introduction of screening for SMA and SCID.
I was 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 rollout 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. This investment will be crucial to providing additional funds for new equipment, staff recruitment, validation, quality assurance and training to facilitate addition of new conditions to NBS programme.
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.
