All newborn babies in England will be tested for spinal muscular atrophy (SMA), a devastating muscle-wasting disease, following a campaign by the Daily Mirror and singer Jesy Nelson. The former Little Mix member demanded universal screening after her twin daughters were diagnosed too late, having already suffered irreversible nerve damage that means they will likely never walk. The government has now agreed to expand the heel-prick test to include SMA, a major victory for the Mirror's campaign.
Jesy Nelson's Emotional Response
Jesy said: "Today is a day of hope. 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. It's an overwhelming feeling I can't really explain, to be honest. I just feel quite emotional. And I'm so grateful to the Mirror. When you go to your petrol garage, people that may not follow me necessarily on Instagram but they'll see the newspaper… and it's bringing so much awareness."
Landmark Change to Prevent Lifelong Disability
The change will prevent dozens of children with SMA each year from enduring lifelong disability, including being fed via a tube directly into the stomach and needing help to swallow. The Mirror has highlighted the SMA testing scandal since 2021, reporting that on average 48 babies a year were diagnosed too late after irreversible disability had occurred. Of these, 28 have the most severe SMA Type 1, which often results in children requiring a machine to breathe at night and needing to be "peg fed" into the stomach.
Jesy's Personal Campaign
Jesy Nelson, 34, joined forces with the Mirror in January after her twin girls Ocean and Story were diagnosed with SMA Type 1. They were diagnosed only at six months, despite repeated visits to the GP and healthcare visitors. Jesy and her mother were adamant something was wrong after noticing the infants had stopped moving their legs. By the time of diagnosis, irreversible nerve damage had caused muscle wasting.
Government and Health Secretary Response
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. 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."
Campaign Milestones and Public Support
Jesy joined forces with charity SMA UK, which had long demanded universal screening. She launched a petition, promoted in the Mirror, signed by 150,000 people and debated in Parliament. Giles Lomax, chief executive of SMA UK, said: "This is a watershed moment. We are hugely grateful for all that the Mirror have done to magnify this campaign and bring it to public attention. It's made a huge difference to be able to get this across the line and make the public aware that there are people living with SMA and what they go through."
Timeline of Screening Rollout
The UK National Screening Committee had refused to recommend the £5 blood test for SMA on the NHS since 2018, despite drugs that could effectively cure the disease before it takes hold. An NHS pilot testing most newborns in England had been delayed for years, but following a meeting between Jesy, Giles, and former Health Secretary Wes Streeting, the government agreed to bring the start date forward from January 2027 to October this year. However, the committee insisted on a nationwide pilot testing 404,000 newborns a year, leaving 163,000 untested as a control group—a situation experts branded "unethical." Today's change means that from October 2027, the remaining six English areas will start screening so every newborn is tested.
Impact on Families and Future Generations
SMA UK boss Giles Lomax, whose own twins Finn and Zara were diagnosed late with SMA in 2019—exactly a year after the government initially rejected screening—said: "I'm hugely proud of the SMA community for never giving up. It's too late for those of us living with SMA, for my twins and for those we must not forget who have died from the condition, but we have changed the future for SMA kids. If someone screened is diagnosed they will be able to live with no symptoms of SMA. They will never have to go through what we went through."
Devolved Nations and Call for Full Coverage
The devolved government in Scotland has already decided to start screening all babies for SMA, but no such decision has been made in Wales and Northern Ireland, where all 47,000 newborns will remain untested annually. Giles added: "We will not stop until we get full coverage. We won't take our foot off the gas until every single baby in the UK is screened."
Support from Health Officials and Charities
Michelle Kane, screening director at NHS England, said: "The courage Jesy Nelson has shown in sharing her family's experience and campaigning for other families is truly remarkable." Andy Fletcher, chief executive of Muscular Dystrophy UK, said: "This is a landmark moment for the SMA community. With a condition like SMA time is everything and this development will be life-changing for future generations of children."
What is Spinal Muscular Atrophy?
One in every 10,000 babies are born with SMA, caused by a faulty version of the Survival Motor Neuron 1 (SMN1) gene. The SMN1 gene should stimulate production of SMN protein, which maintains the health of nerve cells that transmit signals between the brain, spinal cord, and muscles. Without this protein, motor neurons die off, and muscles—particularly in the legs, chest, and arms—don't receive signals to move and waste away. Nerve cells die off in days, so even short delays in treatment can result in severe disability. Before 2019, UK babies with SMA type 1 often didn't survive until their second birthday, and those with milder type 2 would never walk, facing life in a wheelchair, multiple surgeries, and respiratory infections. One in 40 people carry the faulty SMN1 gene—around 1.7 million carriers in the UK. Carriers do not have SMA, but if two carriers have a baby, there is a one in four chance the baby will have SMA.
Available Treatments
Three treatments that stop disease progression are approved on the NHS. Spinraza is injected around the spine every four months and encourages the body to produce more SMN protein. Zolgensma is a one-off injection that carries a healthy copy of the SMN1 gene to the brain and nerve cells. Evrysdi is taken as a liquid daily for life to increase SMN protein production.
The Heel Prick Test
The Newborn Blood Spot Test sees five-day-old babies have their heel pricked to collect four drops of blood on a special card. The UK currently checks for only nine out of a potential 50 serious health conditions, including cystic fibrosis. This compares to 48 in Italy, 36 in Russia, 31 in Austria, and 29 in Poland and Portugal. SMA screening is already in place in 65% of EU countries, including Poland and Macedonia, as international evidence showed it prevents lifelong disability and death. Ukraine even urgently rolled out screening during wartime.
