Dáil Éireann Debate, Tuesday - 2 December 2025
517. Deputy Barry Ward asked the Minister for Health the timeline for the addition of spinal muscular atrophy to the heel prick test for newborn babies; the actions she is taking to ensure no further delays to its introduction; and if she will make a statement on the matter. [67289/25]
Amharc ar fhreagra520. Deputy Paula Butterly asked the Minister for Health when spinal muscular atrophy will be fully implemented as part of the newborn screening heel-prick programme; the timeline for the introduction of these screenings; and if she will make a statement on the matter. [67322/25]
Amharc ar fhreagra528. Deputy Ann Graves asked the Minister for Health the position regarding adding spinal muscular atrophy to the national heel prick test (details supplied). [67350/25]
Amharc ar fhreagra530. Deputy Erin McGreehan asked the Minister for Health when newborn screening for spinal muscular atrophy (SMA) will commence; the reasons for the more than two-year delay since the decision to add SMA to the national heel-prick programme; and if he will provide a definitive implementation date. [67355/25]
Amharc ar fhreagra531. Deputy Erin McGreehan asked the Minister for Health if her Department has reviewed the latest European data showing that most EU countries implemented SMA newborn screening within 10-18 months, with 80% of European babies already screened by September 2025; and how Ireland's ongoing delay is being justified in that context. [67356/25]
Amharc ar fhreagra532. Deputy Erin McGreehan asked the Minister for Health the remaining operational, laboratory, or procurement barriers to the implementation of SMA newborn screening; the work underway to resolve these; and the expected timeline for completion. [67357/25]
Amharc ar fhreagra533. Deputy Erin McGreehan asked the Minister for Health if her Department has assessed the clinical risk posed by continued delays in SMA newborn screening, given that infants diagnosed after symptom onset face irreversible neuromuscular deterioration and poorer lifelong outcomes; and to publish any related risk assessments. [67358/25]
Amharc ar fhreagra534. Deputy Erin McGreehan asked the Minister for Health the governance structures in place to oversee the introduction of new conditions to the national newborn screening programme; and the way in which accountability is being ensured in relation to the delayed implementation of SMA screening. [67359/25]
Amharc ar fhreagra578. Deputy Johnny Guirke asked the Minister for Health her plans for urgent prioritisation of SMA newborn screening implementation, delayed since the Ministerial announcement in 2023, with a clear time-bound commitment indicating when screening will finally commence; and if she will make a statement on the matter. [67692/25]
Amharc ar fhreagra589. Deputy Peadar Tóibín asked the Minister for Health the reason newborn babies are not screened for spinal muscular atrophy (SMA); when SMA will be included in the newborn screening programme; and if she will make a statement on the matter. [67711/25]
Amharc ar fhreagra598. Deputy Willie O'Dea asked the Minister for Health when screening will begin for Spinal Muscular Atrophy (SMA), as part of the newborn screening programme; and if she will make a statement on the matter. [67826/25]
Amharc ar fhreagraI propose to take Questions Nos. 517, 520, 528, 530, 531, 532, 533, 534, 578, 589 and 598 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 babies (between 3 and 5 days old) are offered newborn bloodspot screening (generally known as the ‘heel prick’ test), which tests for nine rare but serious conditions that are treatable if detected early in life. The Programme for Government commits to continually reviewing the number of conditions babies are screened for.
Incremental progress continues to be made on the expansion of the National Newborn Bloodspot Screening Programme (NNBSP). In 2023, two recommendations from the National Screening Advisory Committee (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 purchased, delivered and successfully installed at the newborn screening laboratory and significant progress continues with regards to the laboratory verification process. The recruitment process to hire the additional staff required to support the expansion of the NNBSP has been completed and work continues on developing screening pathways for both conditions.
In relation to concerns raised around the length of the implementation process, it should be emphasised that Ireland is not taking longer than other comparable countries to assess and implement additions to the NNBSP.
The Health Council of the Netherlands first recommended screening for SMA in 2019 and implementation was completed three years later in October 2022. In the United States of America, it took six years to fully implement SMA screening after it was added to the Recommended Uniform Screening Panel (RUSP) in 2018. In the United Kingdom, proposals for screening for SCID and SMA have been under consideration by the UK National Screening Committee since 2017 and 2018 respectively.
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.
