Dáil Éireann Debate, Tuesday - 13 December 2022
596. Deputy Neale Richmond asked the Minister for Health his views on whether the current approximate four-year process to have a disease added to the newborn heel-prick test is sustainable; the steps that are being taken to expedite this process with a view of having new diseases such as spinal muscular atrophy added to the test; and if he will make a statement on the matter. [61939/22]
View answerI am fully committed to supporting our population 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. The expansion of the National Newborn Bloodspot Screening (NBS) Programme is a priority for me.
It is important to be aware that any decisions about changes to our national screening programmes, such as screening for Spinal Muscular Atrophy (SMA), will be made on the advice of our National Screening Advisory Committee (NSAC). This independent expert group considers and assesses evidence in a robust and transparent manner, and against internationally accepted criteria. It is important we have rigorous processes in place to ensure our screening programmes are effective, quality assured and operating to safe standards, and that the benefits of screening outweigh the harms. As you will appreciate, these are lengthy and complex processes; however, the NSAC timelines for evaluation and decision-making are similar to other jurisdictions.
Once a recommendation for the addition of a condition to the programme is approved, the HSE needs to undertake an extensive body of work to prepare for implementation. This work can include completion of laboratory verification, diagnostic and clinical pathways, as well as development of communication and other resources for parents and health professionals.
Earlier this year, in May 2022, ADA-SCID was added as a ninth condition to the NBS Programme. This was implemented by the HSE less than two years after the NSAC recommendation was approved in August 2020, despite the ongoing challenges over the period including those posed by COVID-19 and the cyberattack.
The NSAC's first Annual Call in 2021 for proposals for new screening programmes or changes to our existing programmes, received a significant response with a total of 53 submissions received. Submissions were received from various sources, including members of the public and patient advocates, and have been undergoing consideration by the committee at its scheduled meetings during 2022. The NSAC recently published its work programme on its website.
A number of newborn conditions are undergoing active consideration by the NSAC, and a recommendation regarding further expansion is expected before the end of 2022. The final report from HIQA on its Health Technology Assessment (HTA) for the addition of a tenth condition (SCID), was recently presented to the NSAC at its December meeting.
The expansion of newborn bloodspot screening is being continually reviewed across Europe where the number of conditions screened for varies significantly. For example, the UK currently screens for a similar number of conditions (nine) as Ireland.
I look forward to receiving further recommendations from the Committee shortly, and I wish to assure you that I remain committed to the further expansion of screening in Ireland in accordance with internationally accepted criteria and best practice.
