All babies born in England will be screened for spinal muscular atrophy (SMA), a rare genetic condition causing progressive muscle wastage, as part of a national newborn screening program. The Department of Health and Social Care announced the rollout will begin as an evaluation program by the end of this year, eventually screening hundreds of thousands of newborns through a simple heel prick blood test.
Jesy Nelson, formerly of the pop group Little Mix, has been a vocal advocate for universal SMA screening after her twins, Ocean Jade and Story Monroe Nelson, were diagnosed with the condition. Nelson described previous screening availability as a "postcode lottery," where access to testing depended on location. The new initiative aims to ensure all babies across England receive the same testing opportunities.
"Today is a day of hope," Nelson stated. "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."
SMA can impair a child's ability to sit up, crawl, or walk, and in severe cases, can affect breathing and swallowing. Early diagnosis and treatment are crucial for delaying the progression of the illness and improving long-term outcomes.
The expansion of the screening program will inform future recommendations by the UK National Screening Committee. Giles Lomax, chief executive officer of Spinal Muscular Atrophy (SMA) UK, called the development a "hugely important step forward," noting that early diagnosis and access to life-changing treatment will benefit thousands of babies.
Health Secretary James Murray emphasized the importance of equitable healthcare, stating, "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."
Scotland is also developing a similar screening program, and the Department of Health and Social Care is seeking investment to expand evaluation efforts. The full implementation of the SMA test across all newborn screening laboratories in England is anticipated to continue through 2027.