Why is England testing every newborn for SMA? The new NHS screening programme aims to detect the rare genetic disorder early and improve survival.
Every baby born in England will soon be offered a life-saving genetic test for spinal muscular atrophy (SMA) shortly after birth, in a major expansion of the NHS newborn screening programme aimed at identifying the rare condition before symptoms develop. ()
The UK government announced that laboratories across England will begin testing newborns for SMA from October 2026, three months earlier than originally planned, with nationwide coverage expected as the programme expands. Health experts say earlier diagnosis could allow babies to receive treatment before irreversible nerve damage occurs, dramatically improving their chances of living healthy lives.
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What Is Spinal Muscular Atrophy?
Spinal muscular atrophy is a rare inherited genetic disorder that affects the nerve cells responsible for controlling muscle movement. The disease gradually destroys motor neurons in the spinal cord, causing progressive muscle weakness, difficulty sitting, crawling and walking, as well as problems with swallowing and breathing.
The condition affects around one in every 10,000 babies. Without early treatment, the most severe forms can be life-threatening, with many affected children dying before the age of two.
SMA occurs when a child inherits faulty copies of the SMN1 gene from both parents. Although parents usually do not show symptoms themselves, each pregnancy carries a 25% chance of producing a child with the condition if both parents are carriers.
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Why Early Testing Matters
One of the biggest challenges with SMA is that symptoms often appear only after permanent damage has already occurred.
By the time muscle weakness becomes noticeable, many motor neurons have already been lost and cannot be restored.
Newborn screening allows doctors to diagnose babies before symptoms develop, making it possible to begin treatment immediately. Studies have shown that children treated before symptoms appear can achieve significantly better outcomes, with many reaching normal developmental milestones such as sitting, standing, and walking.
The new test will be added to the routine heel-prick blood test, which is already performed when babies are around five days old to screen for several serious but treatable conditions.
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Programme Expanded to Cover Every Newborn
Earlier this year, health authorities planned to introduce SMA screening in only part of England, covering around 72% of newborns through a phased rollout.
However, concerns that the approach would create a “postcode lottery” prompted the government to expand the programme so that every baby born in England will eventually receive the test.
The Department of Health and Social Care said the rollout is being accelerated by increasing the number of laboratories capable of carrying out SMA screening, allowing testing to begin sooner than originally expected.
Campaigners Welcome the Decision
Patient groups and charities have welcomed the decision, calling it a landmark moment for families affected by SMA. Giles Lomax, Chief Executive of Spinal Muscular Atrophy UK, said universal screening will ensure thousands of babies benefit from earlier diagnosis and timely access to life-changing treatment.
The announcement follows years of campaigning by families, charities, clinicians, and public figures who argued that geography should not determine whether newborns receive access to potentially life-saving testing.
One of the most prominent campaigners has been singer Jesy Nelson, whose twin daughters were diagnosed with SMA. After the government confirmed the nationwide rollout, Nelson described the decision as a victory for future families.
“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,” she said.
Life-Changing Treatments Are Now Available
In recent years, treatment options for SMA have improved dramatically. Several therapies, including gene replacement and medicines that increase production of the missing survival motor neuron protein, can significantly slow or even prevent disease progression if administered before symptoms appear.
Doctors say this makes early diagnosis through newborn screening especially valuable because treatment is most effective before motor neurons suffer irreversible damage.
Without screening, diagnosis often occurs only after babies begin missing developmental milestones, reducing the effectiveness of available therapies.
Part of a Broader Push Toward Genomic Medicine
The expanded screening programme reflects the UK’s growing investment in genomic medicine and preventive healthcare.
England has already launched initiatives such as the Generation Study, which is exploring the use of whole-genome sequencing to identify hundreds of rare but treatable genetic conditions in newborns.
Health officials say adding SMA to routine newborn screening represents another important step toward detecting serious diseases earlier, enabling treatment before symptoms appear and improving long-term health outcomes.
What It Means for Families
For parents, the addition of SMA to the routine heel-prick screening test means babies with the condition can be identified within days of birth rather than months after symptoms emerge.
Health experts believe the earlier diagnosis will help prevent severe disability in many children and, in some cases, save lives.
With every newborn in England expected to benefit from the programme, clinicians and patient advocates say the expansion marks one of the most significant advances in newborn genetic screening in recent years, offering families access to life-changing treatment when it can make the greatest difference.
References:
- Every baby in England to get life-saving genetic test from birth – (https://www.gov.uk/government/news/every-baby-in-england-to-get-life-saving-genetic-test-from-birth)
Source-Medindia