Press release
Minister for Health announces additional funding for the expansion of the National Newborn Bloodspot Screening Programme
From Department of Health
Published on
Last updated on
From Department of Health
Published on
Last updated on
The Minister for Health Stephen Donnelly has today announced an additional €700,000 of new development funding for the expansion of the National Newborn Bloodspot Screening (NBS) Programme.
This brings the total additional funding for 2024 to €1.4 million and will allow for the rollout of testing for two new conditions in 2024: Severe Combined Immunodeficiency (SCID) and Spinal Muscular Atrophy (SMA).
The NBS programme, commonly known as the “heel prick” test, is carried out on babies in the first 72 to 120 hours of life and currently screens for nine rare but serious conditions. Approximately 120 babies with these conditions are identified per year through this test.
In 2023, Minister Donnelly accepted the recommendation of the National Screening Advisory Committee (NSAC) to add a 10th and 11th condition to the programme.
Today’s funding announcement will ensure the introduction of both conditions to the NBS programme in 2024, underlining the Minister’s ongoing commitment to reducing the impact of these diseases in children and infants.
Minister Donnelly said:
"Since becoming Minister for Health, the expansion of newborn screening has remained a priority for me and this Government. In 2022, the number of conditions screened for under the programme increased from eight to nine with the addition of Adenosine Deaminase Deficiency Severe Combined Immunodeficiency (ADA-SCID).
"Last year, I was pleased to accept the recommendations of the NSAC to add SCID and SMA to the programme, and I’m looking forward to working with all stakeholders to ensure the rollout of testing for these conditions later in 2024.
"I’m very proud to say that by the end of this year, the number of conditions Ireland screens for will have increased from 8 to 11, representing a 37% increase in the lifetime of this Government.
"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. Screening will make a real difference to their lives, which is why I am determined to see more conditions introduced as soon as possible."
The NSAC is the independent expert group tasked with considering proposals for new or changes to existing screening programmes. It issues recommendations to the Minister for Health following consideration of evidence reviews or Health Technology Assessments (HTAs) carried out by the Health Information and Quality Authority (HIQA).
Minister Donnelly has today also announced that he is allocating additional resources that will increase the capacity of HIQA to take on more HTA processes simultaneously.
The Minister said:
"An evidence-based approach is crucial to the continuing development of Ireland’s screening programmes, and collaboration with HIQA via HTAs is an essential component of this.
"I’m very pleased to confirm that additional resources being made available in 2024 will expand HIQA’s capacity to conduct evidence reviews, thereby supporting NSAC to advance its work programme. This is important in the context of constantly emerging new developments and breakthroughs in the identification and treatment of newborn conditions. Notably, this will provide a platform for future expansion of the NBS programme, in line with Government commitments.
"This increased capacity will be important for the Committee to speed up the process of their reviews to add conditions such as MLD and tests for other diseases to the newborn screening programme."
The National Newborn Bloodspot Screening Programme (NNBSP) delivers newborn bloodspot screening (NBS), which is completed in the first 72 to 120 hours of life.
Participation in the NBS programme in Ireland is high, with an estimated uptake of 99.9%, indicating a considerable degree of confidence in the programme, and the programme has been acknowledged as one of the most successful national public health initiatives.
Each year, the NNBSP identifies approximately 120 babies in Ireland with one of the conditions screened for through the programme. The addition of SMA and SCID is expected to increase these values significantly.
The introduction of new screening programmes typically takes at least 18-24 months.
The NSAC advises and reassures both the minister and the public that Ireland’s screening programmes are evidence-based and that the policies being implemented are appropriate.
The Committee consists of 20 members, including the chair. The current NSAC chair is Dr Suzanne Crowe, Consultant Paediatric Intensive Care Medicine at Our Lady’s Children’s Hospital Crumlin (OLCHC).
Health technology assessment (HTA) is a multidisciplinary research process that collects and summarises information about a health technology (for example, a screening programme). The information can cover a range of fields, including clinical effectiveness and safety, cost-effectiveness and budget impact, organisational and social aspects, and ethical and legal issues. A range of stakeholders are consulted as part of the process. The findings of a HTA inform the decision-making of the NSAC experts.
Following an HTA, the NSAC convene to consider the findings and reach a decision on whether to recommend the inclusion of the new or changed screening programme. The chair of the NSAC then writes to the Minister of Health with the recommendation.
If the Minister accepts the recommendation, the process is transferred to the HSE for implementation. There are typically budgetary, validation, and quality assurance criteria that the HSE need to satisfy to progress implementation.