Former Little Mix star Jesy Nelson has said news of a full national rollout for spinal muscular atrophy (SMA) screening is ‘a victory for every family affected’.
Nelson's impassioned campaign for newborn screening was spurred by the diagnosis of her twins, Ocean Jade and Story Monroe Nelson, with the rare genetic condition which leads to progressive muscle wastage.
The Department of Health confirmed on Thursday that England will implement the national newborn screening programme for SMA as part of an evaluation from the end of this year.
This crucial initiative will see hundreds of thousands of infants screened via a simple heel prick blood test 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.
“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.”
In a post on Instagram last month, Nelson said a previous announcement that screening would come in October was a big milestone but would “only cover 72% of England”.
The singer, visibly emotional in a nearly seven-minute video, shared her "heartbreak" after Public Health Minister Sharon Hodgson had argued against a full national rollout of SMA screening.
She added: “That means some babies won’t be screened simply because of where they live. A postcode lottery like that just isn’t fair.
“Every baby deserves the same chance, every baby’s life matters.”
The new development means all parts of England will be covered by the evaluation, which will inform future recommendations on testing newborns by the UK National Screening Committee.
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, this demonstrates a clear commitment to making newborn screening available across England.
“No family should face a postcode lottery when it comes to a condition where every day without treatment can lead to irreversible loss of motor neurons.
“We are incredibly grateful to the families, clinicians, researchers, supporters and campaigners who have helped us reach this point, and we look forward to the day when every newborn across the whole of the UK is offered this simple, life-changing test.”
SMA can leave babies unable to sit up, crawl or walk. In the most severe cases, it stops them breathing or swallowing.
Early treatment, however, 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.
“I’m in awe of the campaigners who’ve worked tirelessly to raise awareness of this rare but very serious genetic condition. We’re moving faster and rolling screening out more widely to ensure children get the best treatment from the earliest possible moment.”
Scotland is establishing a similar screening programme drawing on funding from the private sector.
The Department of Health and Social Care is taking a similar approach and seeking £5 million of investment to expand evaluation.
