Stephen Donnelly (Wicklow, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

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. It is important that we have rigorous processes in place to ensure our screening programmes are effective, quality assured, validated 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 over the past 18 months. As the Deputy will be aware, in November 2023, I approved the recommendation from NSAC on the addition and Spinal Muscular Atrophy (SMA) to the NBS programme. This 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, representing a 37% increase over the lifetime of this Government.

I have written to the HSE requesting that they commence implementation planning for SMA and my officials in the Department of Health have already commenced discussions with the HSE National Children’s Screening Service regarding implementation planning. This is expected to result in an ambitious plan, setting out the key steps towards introducing screening for SMA. The plan will also outline ways to ensure an appropriate level of resources is in place to ensure the programme can be expanded in a safe and effective manner.

In this regard, I am pleased to allocate an additional €1.4m for newborn screening this year. This will allow for the rollout of testing for both SCID and SMA in 2024 and represents a significant increase in a single year. The action further demonstrates my ongoing commitment to reducing the impact of these rare but serious diseases in children and infants.

The introduction of screening for SMA 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 SMA as soon as possible.