James O'Connor (Cork East, Fianna Fail)
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836. To ask the Minister for Health her plans to implement spinal muscular atrophy screening in the national heel-prick test (details supplied; and if she will make a statement on the matter. [51131/25]

Pádraig Rice (Cork South-Central, Social Democrats)
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855. To ask the Minister for Health the reasons for the delay in expanding the National Newborn Bloodspot Screening Programme (NNBSP) to include spinal muscular atrophy; the timeline for introduction of screening for this condition in the NNBSP; and if she will make a statement on the matter. [51339/25]

Pádraig Rice (Cork South-Central, Social Democrats)
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856. To ask the Minister for Health the reasons for the delay in expanding the National Newborn Bloodspot Screening Programme (NNBSP) to include severe combined immunodeficiency; the timeline for introduction of screening for this condition in the NNBSP; and if she will make a statement on the matter. [51340/25]

Pat Buckley (Cork East, Sinn Fein)
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868. To ask the Minister for Health for an update on implementing spinal muscular atrophy screening in the national heel-prick test; and if she will make a statement on the matter. [51453/25]

Albert Dolan (Galway East, Fianna Fail)
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875. To ask the Minister for Health to provide an update on the implementation of spinal muscular atrophy (SMA) screening in the national newborn bloodspot heel-prick test, in view of the decision made in 2023 to include SMA in the programme alongside severe combined immunodeficiency; the reasons for the ongoing delay in its roll out despite the allocation of funding and the acknowledged urgency of early detection; and the timeframe for when SMA screening will be fully implemented to ensure that no child in Ireland is denied the opportunity for early diagnosis and treatment. [51504/25]

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I propose to take Questions Nos. 836, 855, 856, 868 and 875 together.

As Minister for Health, I am determined to support our screening programmes, which are a valuable part of our health service, enabling early treatment and care for many people, and improving the overall health of our population. Currently, all newborn babies (between 3 and 5 days old) are offered newborn bloodspot screening (generally known as the ‘heel prick’), which tests for nine rare but serious conditions that are treatable if detected early in life.

The Deputy may be aware that a new National Rare Disease Strategy was launched on 27 August. This Strategy aims to ensure that all people living with a rare disease and their families have access to equitable, inclusive and cross-sectoral care throughout their life journey that will enable them to reach their full potential and to live their best lives. Work is ongoing to ensure the full implementation of the Strategy, including the establishment of an Implementation Oversight Group and the development of a detailed implementation plan outlining the actions required to fully achieve the Strategy's 11 recommendations.

Incremental progress continues to be made on the expansion of the National Newborn Bloodspot Screening Programme (NNBSP). In 2023, two recommendations from NSAC on the addition of Severe Combined Immunodeficiency (SCID) and Spinal Muscular Atrophy (SMA) to the NNBSP were approved. In Budget 2024, an additional €1.4 million of new development funding was provided to support the SMA/SCID implementation process. Once both conditions have been fully implemented, the number of conditions screened for in Ireland will increase to 11.

In terms of the current implementation status, the HSE has advised that the equipment needed to enable the roll-out testing for SMA and SCID has been procured, and that verification testing has commenced and is progressing well. The recruitment process to hire the additional staff required to support the expansion of the NNBSP has almost concluded and work has commenced on developing screening pathways for both conditions.

Officials in my Department are actively engaged with the HSE to ensure that progress continues on implementing an ambitious timeline for the introduction of screening for SMA and SCID. 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.