Every newborn in England to be tested for Spinal Muscular Atrophy
The Department for Health & Social Care has today (Thursday 16th July), announced a national newborn screening programme for Spinal Muscular Atrophy to be rolled out across England.
The England-wide initiative aims to give clinicians a better chance of spotting Spinal Muscular Atrophy in babies before symptoms appear. Early diagnosis can allow babies to live full and healthy lives.
What is Spinal Muscular Atrophy?
Spinal muscular atrophy (SMA) is a rare genetic condition that can cause muscle weakness. It gets worse over time, but there are medicines and other treatments to help manage the symptoms.
The symptoms of spinal muscular atrophy (SMA) affect everyone differently, but can include:
- muscle weakness – such as floppy or weak arms and legs
- movement problems – such as difficulty sitting up, crawling or walking
- problems with breathing or swallowing
- twitching or shaking muscles (tremors)
- bone and joint problems – such as an unusually curved spine (scoliosis)
The government will expand newborn screening for SMA throughout the country as part of an evaluation programme. It will begin later this year and hundreds of thousands of babies will be screened thanks to the expansion of the scheme.
SMA can leave babies unable to sit up, crawl or walk. In the most severe cases, it stops them breathing or swallowing but, caught early enough, treatment can significantly improve outcomes for affected children.
Testing works through a simple heel prick to collect a small sample of blood from the baby, taken shortly after birth.
Secretary of State for Health and Social Care, 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.
Giles Lomax, Chief Executive Officer of Spinal Muscular Atrophy (SMA) 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.
