Charity Chief and Former Pop Star Demand Historic Change to Newborn Screening
Giles Lomax, the chief executive of SMA UK, has joined forces with former Little Mix singer Jesy Nelson to issue an urgent call for a historic change in UK healthcare policy. They are demanding that all newborn babies in Britain be routinely checked for spinal muscular atrophy (SMA), a devastating muscle-wasting disease.
A Personal Campaign Driven by Family Experience
Lomax's campaign is deeply personal, rooted in his own family's journey. His seven-year-old twins, Finn and Zara, were diagnosed with SMA Type 2 at 15 months old, a delay that he says could have been avoided with early screening. "Every moment matters to SMA babies - we must act now to change their futures," Lomax emphasizes, highlighting the critical window for intervention.
Since the diagnosis, Lomax has led SMA UK, a charity celebrating its 40th anniversary, in relentless advocacy for research and family support. He describes Britain as being at a "pivotal moment" in the fight against SMA, with Health Secretary Wes Streeting applying pressure on the UK National Screening Committee to reconsider universal testing.
The Transformative Power of Early Detection and Treatment
Medical advancements have fundamentally altered the landscape for SMA. Three NHS treatments—nusinersen, risdiplam, and Zolgensma gene therapy—can correct the faulty gene or provide essential proteins, effectively serving as a cure if administered at birth before irreversible muscle damage occurs.
- Infants treated before symptoms appear can achieve developmental milestones once thought impossible.
- Early diagnosis means the difference between independence and wheelchair dependence, or unaided breathing and life-support reliance.
- Without screening, families often endure traumatic delays, watching their child's strength diminish during weeks or months of diagnostic uncertainty.
Lomax recalls the difficult milestone of 2018, when the UK NSC declined to recommend SMA for national screening due to insufficient evidence on presymptomatic treatments. However, he notes that medicine has not stood still, and the evidence now overwhelmingly supports early intervention.
Regional Progress and the Call for National Action
Scotland is leading the charge, set to introduce SMA screening from March 23rd, a move hailed as a game-changing moment. Yet, Lomax stresses that "it shouldn’t come down to what postcode you live in," advocating for equitable access across the UK.
The UK NSC is now revisiting its 2018 decision and moving toward an in-service evaluation of newborn screening for SMA. With four babies diagnosed with SMA each month, Lomax argues that delays are unacceptable. "It is no longer a question of 'if' but 'when' the rest of the UK will follow," he asserts, pointing to the undeniable ethical imperative.
Presymptomatic screening is not just good policy; it is a lifeline that can no longer be delayed. Lomax and Nelson's campaign, backed by Health Secretary Streeting's commitment to accelerating screening, underscores that every baby deserves the best possible start in life, free from the preventable ravages of SMA.
