Anne Rabbitte (Galway East, Fianna Fail)
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164. To ask the Minister for Health the preparations his Department and the HSE are making to ensure that every baby in Ireland is tested for spinal muscular atrophy in the National Newborn Bloodspot Screening Programme, as per his announcement in November 2023; when testing will be implemented; and if he will make a statement on the matter. [27304/24]

Stephen Donnelly (Wicklow, Fianna Fail)
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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 continues to be made on the expansion of the NBS Programme. As the Deputy will be aware, last year I approved two recommendations from NSAC for the addition of Severe Combined Immunodeficiency (SCID) 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 implemented. I would highlight that this will represent a 37% increase achieved under the lifetime of this Government.

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.

In February of this year, 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 of testing for both SCID and SMA and represents a significant funding 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 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.