A UK parliamentary committee chair has urged the government to include spinal muscular atrophy testing in the newborn heel prick test after delays in implementing curative treatments.
Layla Moran MP, chair of the Health and Social Care Committee, has expressed urgent concern over the lack of action regarding spinal muscular atrophy (SMA) testing for newborns in the UK. In a letter to Health Secretary Wes Streeting, she supported the Mirror's campaign to incorporate a £5 test for SMA into the standard newborn heel prick test, highlighting that treatments have been available on the NHS for years yet testing has not been implemented.
The urgency of this plea is heightened by the recent public comments from singer Jesy Nelson, who shared the heartbreaking news that her twin daughters were diagnosed with SMA too late for effective treatment, resulting in irreversible nerve damage. This personal story brings to light the real-life implications of delayed testing, reinforcing the need for systemic changes in the way the NHS approaches genetic testing for serious conditions that could be mitigated by early detection.
Moran's advocacy aims to push the government towards immediate action, urging that the lives of newborns be prioritized. The campaign emphasizes the importance of early testing for conditions like SMA, which can lead to severe disabilities if not identified and treated quickly, and seeks to ensure that all babies are screened to avoid preventable suffering in families across the UK.
