Jesy Nelson Celebrates Major Advancement as NHS to Screen 404,000 Newborns for Spinal Muscular Atrophy
Jesy Nelson has expressed her excitement over a significant announcement that the NHS will begin screening newborns for spinal muscular atrophy (SMA), a severe muscle-wasting disease. Health Secretary Wes Streeting has expedited plans to test over 400,000 babies in England for this condition.
Nelson, a former member of Little Mix, has been vocal about the challenges faced by her ten-month-old twins, who were diagnosed too late to receive effective treatment, resulting in irreversible nerve damage. She has been informed that her children will never walk.
The campaign for universal newborn screening for SMA has gained momentum, with Nelson advocating for early testing to ensure that infants can access potentially life-saving treatments right from birth. As reported by www.mirror.co.uk, the Mirror has been a key player in raising awareness about this issue.
A Bittersweet Victory
Nelson described the announcement as “bittersweet,” acknowledging the progress while lamenting that it came too late for her children. She stated, “This is massive. Now there are potentially 404,000 babies who will be screened over the next 12 months. I just wish this had been here for my babies and for all the SMA babies who never got tested. That’s why I wanted to do this – I don’t want anyone to have to go through this heartbreak.”
The UK National Screening Committee had previously declined to roll out the £5 SMA blood test through the NHS since 2018. However, following Nelson’s advocacy and public awareness efforts, a change has been initiated. The pilot program for newborn screening, which had faced delays, is now set to commence in October 2023, significantly ahead of the original start date of January 2027.
The Screening Pilot
The pilot program will involve an estimated 404,000 babies being tested in a phased rollout across England. However, 163,000 newborns will remain untested to serve as a control group, a decision that has drawn criticism from experts who label it “unethical.” This means that approximately 11 babies each year may still receive a late diagnosis.
Nelson expressed concern about the unequal access to screening, stating, “It’s just bittersweet because we’re not fully there yet. It’s like literally a postcode lottery because it’s not the whole of England. There’ll be 163,000 babies that won’t get screened – and that is a lot of babies.”
She emphasized the importance of universal testing, arguing that no baby should be left out of potentially life-changing treatments. “This shouldn’t even be a thing. All babies should be getting tested and all babies should be living,” she added.
Support from SMA UK
The announcement was confirmed during a meeting with SMA UK, attended by its chief executive, Giles Lomax, whose twins also have SMA. Lomax expressed gratitude for the formal announcement, stating, “Following years of campaigning, we are delighted to see the formal announcement that screening for SMA will start in six months’ time in England. This milestone will change the lives of so many diagnosed through the heel prick test.”
Lomax, who took over as chief executive of SMA UK after his children were diagnosed, reiterated the need for the test to be rolled out across all regions of England and the home nations. He stated, “No baby should be left behind based on where they live.”
Government Response
In a letter to Nelson and Lomax, Streeting acknowledged their contributions and the importance of their advocacy. He noted, “It was great to meet you both. I really appreciated you sharing your personal experiences of raising children with SMA and applaud the work you have both done highlighting the issue and seeking earlier diagnosis.”
While Scotland has decided to screen all newborns for SMA, no such measures have been implemented in Wales and Northern Ireland, where approximately 47,000 newborns will remain untested annually. Streeting indicated that his officials are working on extending the screening to the entire country.
Understanding Spinal Muscular Atrophy
SMA is caused by a defect in the SMN1 gene, which is crucial for producing the SMN protein that maintains the health of motor neurons. Without this protein, motor neurons die, leading to muscle atrophy, particularly in the legs, chest, and arms.
Currently, three treatments are available on the NHS that can halt the progression of the disease. Nusinersen, known as Spinraza, is injected into the spinal cord every four months to encourage SMN protein production. Evrysdi is taken daily as a liquid, while Zolgensma is a one-time infusion that delivers a healthy copy of the SMN1 gene to the brain and nerve cells.
The Heel Prick Test
The Newborn Blood Spot Test, commonly known as the heel prick test, involves pricking the heel of five-day-old babies to collect blood samples. The UK currently screens for only ten serious health conditions, compared to 48 in Italy and 31 in Austria. Despite the availability of SMA screening in many countries, the UK has lagged behind.
Delays in Screening Implementation
The UK National Screening Committee initially decided against including SMA in the newborn screening program in 2018. Since then, advancements in treatment options have emerged, including gene therapies that can significantly improve outcomes if administered early. Despite this, the committee required further studies before making a recommendation for screening.
The ongoing pilot program, funded by the National Institute for Health and Care Research (NIHR), aims to evaluate the effectiveness of newborn screening for SMA. A spokesperson for the NIHR stated, “The NIHR is funding a large study to evaluate newborn screening for SMA. Its potential impact will be to demonstrate whether newborn screening for SMA can be delivered effectively through the NHS.”
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Published on 2026-04-01 22:39:00 • By FAME Delivered News Desk