A majority of people are calling for spinal muscular atrophy (SMA) to be added to the newborn “heel-prick” test. Although the previous government promised this, it has not yet been implemented.
A survey by iReach Insights, commissioned by SMA Ireland and Novartis Ireland, found that 51% of respondents believe SMA screening should be prioritized, with support rising to 56% among those planning to have children.
SMA causes severe muscle degeneration, with symptoms appearing at 3 to 4 months, making early detection crucial. Without early intervention, SMA can be fatal by age two, but treatments are available for early diagnoses.
The survey also showed 99% support for expanding newborn screening for rare diseases, with 96% recognizing the benefits of the heel-prick test.
Around six babies are born with SMA annually in Ireland. Jonathan O’Grady from SMA Ireland urged Health Minister Jennifer Carroll MacNeill to act quickly. “Every day counts with SMA,” he said.
Stephanie Vaz Vieira, whose son Theo has SMA, added, “SMA must be added to the heel-prick test now. No other family should have to wait for a diagnosis like we did.”
In 2024, €1.4 million was allocated to expand the newborn screening program. However, new equipment and staff training are needed before additional conditions can be added.
The Department of Health confirmed that expanding the National Newborn Bloodspot Screening Programme (NNBSP) is a priority and that progress is being made to add SMA and severe combined immunodeficiency (SCID) as soon as possible.
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