Dáil Éireann Debate, Wednesday - 24 April 2024
176. Deputy Róisín Shortall asked the Minister for Health if he plans to add familial hypercholesterolemia to the National Newborn Bloodspot Screening Programme; if this is being considered by the National Screening Advisory Committee; and if he will make a statement on the matter. [18226/24]
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.
I am committed to ensuring that any expansion of the programme will be safe, ethically robust and evidence based. In this regard, the work of NSAC is supported by specialist teams in the Health Information and Quality Authority (HIQA), who examine the international evidence in terms of the conditions screened for in existing bloodspot screening programmes; the decision-making processes that lead to the inclusion of a condition in an individual country’s newborn bloodspot screening programme; and the role of emerging technologies in programme expansion. I am determined to see the foundations laid for the ongoing expansion of the programme that maximises health outcomes for newborn babies.
In terms of screening for Familial Hypercholesterolemia (FH), in 2023, NSAC decided that this condition would be suitable for an evidence review by HIQA and it has now been added to the HIQA work programme.
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.
