Written answers

Thursday, 25 September 2025

Photo of John Paul O'SheaJohn Paul O'Shea (Cork North-West, Fine Gael)
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337. To ask the Minister for Health to provide funding through the HSE to a charity (details supplied) who provide an invaluable service to public hospitals and other medical facilities for vital medical materials on an out-of-hours service; and if she will make a statement on the matter. [50911/25]

Photo of Jennifer Carroll MacNeillJennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I have asked the Health Service Executive to respond to the Deputy directly, as soon as possible.

Photo of Cian O'CallaghanCian O'Callaghan (Dublin Bay North, Social Democrats)
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338. To ask the Minister for Health if her Department will commit to the swift rollout of SMA screening as part of the heel prick test for newborns, as noted in the National Rare Disease Strategy 2025-2030; if her Department will publish a timeline for when this will happen; and if she will make a statement on the matter. [50913/25]

Photo of Thomas GouldThomas Gould (Cork North-Central, Sinn Fein)
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339. To ask the Minister for Health for an update on the implementation of SMA screening in the newborn heel prick test. [50959/25]

Photo of Jennifer Carroll MacNeillJennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I propose to take Questions Nos. 338 and 339 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 references the new National Rare Disease Strategy, which 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 that 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 (NNBS) Programme. In 2023, two recommendations from NSAC on the addition of Severe Combined Immunodeficiency (SCID) and Spinal Muscular Atrophy (SMA) to the NNBS Programme 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 NNBS 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.

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