Babies born in England will be screened for spinal muscular atrophy (SMA) from October 2027, the Department of Health and Social Care has announced.
Campaigners said the ‘landmark’ moment will allow babies with the condition to be diagnosed and treated before symptoms develop.
The inherited condition causes progressive muscle weakness, leaving babies with floppy arms and legs, making it difficult to sit, crawl or walk. It can also lead to serious breathing and swallowing problems and, if left untreated, can be fatal within the first two years of life.
SMA affects around one in 10,000 babies; usually, about 48 a year in the UK. Those detected at birth can be given a gene-therapy treatment that gives them a normal life.
From October this year, around 72% of newborns in England will begin receiving SMA screening as part of a pilot programme announced in April.
However, the initial rollout drew criticism from campaigners, who warned testing only some newborns could create a ‘postcode lottery’, with babies in some areas missing out on early diagnosis and treatment.
In response, ministers have confirmed screening will be extended to every baby born in the country from October 2027. Universal coverage will be delivered by expanding testing from seven laboratories to all 13 capable of carrying out the test.
Giles Lomax, chief executive of Spinal Muscular Atrophy UK, said: ‘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.’
In similar vein, Andy Fletcher, chief executive of Muscular Dystrophy UK, said the decision marked a significant milestone.
‘The decision to introduce newborn screening for SMA across England is a landmark moment for the SMA community and the many partners who have spent years working to make it a reality,’ he said.
The campaign for universal screening has gained national attention over the last few months as a result of being led by by former Little Mix singer Jesy Nelson. Her twin daughters, Ocean Jade and Story Monroe Nelson, were diagnosed with SMA and she said the limited rollout from October was ‘outrageous’.
‘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,’ Nelson said.
‘Today is a day of hope. This is a victory for every family affected by SMA. While it can’t change the future of our children, I know it marks the beginning of a brighter future for future SMA families.’
Image: Janko Ferlič/UnSplash
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