Former Little Mix singer Jesy Nelson has welcomed the full rollout of spinal muscular atrophy (SMA) screening for newborns in England, calling it a "day of hope" after years of campaigning against what she described as a "postcode lottery."
Campaign Success After Personal Experience
Nelson began advocating for universal newborn screening after her twins, Ocean Jade and Story Monroe Nelson, were diagnosed with SMA, a rare genetic condition that causes progressive muscle wastage. The Department of Health announced on Thursday that the national newborn screening programme for SMA will be rolled out across England as part of an evaluation programme starting from the end of this year.
The screening involves a simple heel prick blood test, which will be offered to hundreds of thousands of babies shortly after birth. Nelson said: "After years of campaigning, it means so much to see the heel prick test for SMA begin rolling out from October, with implementation continuing throughout 2027 until every newborn screening laboratory across the UK is offering the test. Today is a day of hope."
Ending the Postcode Lottery
In a previous Instagram post, Nelson expressed frustration that only 72% of England would initially be covered, calling it unfair. The new development ensures all parts of England will be included in the evaluation, which will inform future recommendations by the UK National Screening Committee. Nelson added: "Knowing that future families will have access to early diagnosis and the opportunity for the best possible outcomes is something I'm incredibly proud to have supported. This is a victory for every family affected by SMA. Whilst it can't change the future of our children, I know it marks the beginning of a brighter future for future SMA families."
Impact of Early Diagnosis
SMA can leave babies unable to sit up, crawl, or walk. In severe cases, it can stop them from breathing or swallowing. However, early treatment can delay the progressive nature of the illness and help children live longer. Health Secretary James Murray said: "No parent should have to watch their child lose the ability to move or breathe, knowing that earlier treatment could have made all the difference. This expansion means babies across England will be tested from birth, giving them the best possible chance of a full and healthy life, and another step in the right direction as we do all we can to reduce health inequalities."
Support from Charities and Campaigners
Giles Lomax, chief executive officer of Spinal Muscular Atrophy (SMA) UK, said: "After years of campaigning by the SMA community and our partner organisations, this is a hugely important step forward. When newborn screening for SMA begins later this year in October, thousands of babies will benefit from earlier diagnosis and access to life-changing treatment. We are delighted to see the confirmation that the remaining six screening laboratories will begin screening from October 2027, demonstrating a clear commitment to making newborn screening available across England."
Aoife Regan, director of impact and charitable programmes at Great Ormond Street Hospital Charity, said: "This is a hugely positive step for babies and families and follows years of tireless campaigning by the SMA community. Early diagnosis can be life-changing. With effective treatments now available, identifying SMA before symptoms appear gives babies the best chance of timely treatment and can help prevent irreversible disease progression."
Future Plans and Funding
Scotland is establishing a similar screening programme with private sector funding. The Department of Health and Social Care is seeking £5 million of investment to expand the evaluation. The rollout will begin in October 2025, with full implementation across all screening laboratories by October 2027.
