Dáil Éireann Debate, Tuesday - 17 February 2026
1089. Deputy Barry Ward asked the Minister for Health if she will provide an update on the implementation of SMA screening within the national newborn bloodspot screening programme as rare disease day on 28 February approaches; and if she will make a statement on the matter. [11942/26]
View answer1090. Deputy Barry Ward asked the Minister for Health the position regarding any target date or timeline for the rollout of SMA screening to all newborns; and if she will make a statement on the matter. [11943/26]
View answer1092. Deputy Barry Ward asked the Minister for Health if her attention has been drawn to the case of a family (details supplied); if she plans to meet with this family to discuss their situation with regards to the delayed SMA diagnosis for their son; and if she will make a statement on the matter. [11945/26]
View answer1093. Deputy Barry Ward asked the Minister for Health if her attention has been drawn to the case of a family (details supplied); if she plans to meet with an organisation to discuss this case and other similar cases ongoing in Ireland; and if she will make a statement on the matter. [11946/26]
View answer1127. Deputy Mairéad Farrell asked the Minister for Health when screening for Spinal Muscular Atrophy (SMA), a rare genetic condition affecting approximately six babies born in Ireland each year, will be included in the national newborn bloodspot screening programme; if SMA screening will be implemented before the end of March 2026, as cited by a leading paediatric clinician in recent media coverage; the preparations that are currently underway to ensure this timeline is met, given that more than two years have elapsed since the decision was taken to include SMA in the heelprick test; and if she will make a statement on the matter. [12116/26]
View answer1144. Deputy David Cullinane asked the Minister for Health when screening for spinal muscular atrophy, a rare genetic condition affecting approximately six babies born in Ireland each year, will be included in the national newborn bloodspot screening programme; if SMA screening will be implemented before the end of March 2026, as cited by a leading paediatric clinician in recent media coverage; the preparations currently underway to ensure this timeline is met, given that more than two years have elapsed since the decision was taken to include SMA in the heelprick test; and if she will make a statement on the matter. [12188/26]
View answer1172. Deputy Erin McGreehan asked the Minister for Health as Rare Disease Day approaches on 28 February 2026, if she will provide an update on the implementation of spinal muscular atrophy (SMA) screening within the national newborn bloodspot screening programme; whether she will confirm a target date for the rollout of SMA screening to all newborns; to outline the Government’s ongoing commitment to expanding the newborn screening programme to include additional rare diseases; and if she will make a statement on the matter. [12317/26]
View answer1237. Deputy Ged Nash asked the Minister for Health when screening for Spinal Muscular Atrophy (SMA), a rare genetic condition affecting approximately six babies born in Ireland each year, will be included in the national newborn bloodspot screening programme; if SMA screening will be implemented before the end of March 2026, as cited by a leading paediatric clinician in recent media coverage; the preparations currently underway to ensure this timeline is met, given that more than two years have elapsed since the decision was taken to include SMA in the heelprick test (details supplied); and if she will make a statement on the matter. [12849/26]
View answerI propose to take Questions Nos. 1089, 1090, 1092, 1093, 1127, 1144, 1172 and 1237 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 on developing screening and treatment pathways for both conditions is in its final stages.
It is expected that screening for both SCID and SMA will commence later this year.
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, 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.
