Cian O'Callaghan (Dublin Bay North, Social Democrats)
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295. To ask the Minister for Health the progress that has been made on the enactment of the National Screening Advisory Committee Bill 2020; and if he will make a statement on the matter. [38293/24]

Stephen Donnelly (Wicklow, Fianna Fail)
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Senator Norris raised the National Screening Advisory Committee Bill 2020 in Seanad Éireann, where it is currently at Second Stage.

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 rollout 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.

In terms of further expansion of our newborn screening programmes, Ireland has always evaluated the case for commencing a national screening programme against international accepted criteria – collectively known as the Wilson- Jungner criteria.

The evidence bar for commencing a screening programme should and must remain high. Uptake rates for the NBS programme are enviably high with an estimated of 99.9% and maintaining confidence in and trust of the programme is key to its success. This ensures that we can be confident that a programme is effective, quality assured and operating to safe standards. There is no doubt that newborn screening programmes have the potential to be rapidly transformed by new technologies and new therapies, but this highlights the need to continue with a robust, methodologically sound and detailed analysis of the evidence in each and every case against internationally accepted screening criteria. The NSAC has been working closely with HIQA and other stakeholders, including patient advocates, in setting out the best approach for Ireland in relation to the further expansion of newborn screening.

Nevertheless, 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. This is why I remain committed to the further expansion of screening in Ireland in accordance with internationally accepted criteria and best practice.