SMA Ireland urgently highlights the critical necessity for immediate attention and action concerning the newborn screening heel prick test in the country, following the updated analysis by Charles River Associates in September 2023.
In a comprehensive assessment conducted by Charles River Associates in January 2021, Ireland disappointingly ranked 20th versus other European countries in terms of the number of conditions screened via the newborn screening heel prick test, examining merely 8 conditions. In stark contrast, 16 of these countries were screening for 10 or more conditions.
A subsequent analysis in September 2022 has further depicted a downward trajectory, with Ireland slipping to the 25th position. Alarmingly, at this juncture, 22 of the peer countries screened for 10 or more conditions, accentuating a widening gap between Ireland and its European counterparts.
In December 2022, SMA Ireland presciently cautioned against the country's fast-approaching descent into becoming a laggard in heel prick testing—a prognosis that sadly appears to be materialising.
Efforts by the Department of Health to expand the heel prick test, including the approval of the inclusion of Severe Combined Immunodeficiency (SCID) screening, were met with initial optimism. However, the disillusionment stems from a glaring 10-month delay in practical implementation of the test, despite its sanctioned approval.
"Approval without tangible implementation is an ineffective and fruitless endeavour," asserts Jonathan O'Grady, Director at SMA Ireland, adding, "The facilities are readily available within the CHI laboratory network to inaugurate advanced genetic testing for pivotal conditions like SCID, yet the actualisation is imperceptibly delayed, awaiting the inauguration of the new Children's Hospital."
Children born in Ireland—this year, next year, and in subsequent years—cannot afford the luxury of time amidst bureaucratic hindrances and organisational dogma. With Ireland precariously situated in the bottom quartile for newborn screening against its European peers, a tangible, immediate course correction is not just necessitated—it is imperative.
SMA Ireland vehemently urges the Health Service Executive to optimally utilise its comprehensive facilities to circumvent further delays in implementation. This is not merely a matter of procedural adherence but a solemn duty of care owed to every newborn in Ireland. To protract is to fail our future generations.
View the Charles River Associates data here.
Charles River Associates is an independent international consultancy. This research study was supported by Novartis Pharmaceuticals.