NHS Announces Newborn Screening for Spinal Muscular Atrophy Following Jesy Nelson Campaign
Health Secretary Wes Streeting has confirmed that the NHS will begin screening newborns for spinal muscular atrophy (SMA) in England, with testing set to commence this October. This decision follows a passionate campaign led by former Little Mix singer Jesy Nelson, who shared the heartbreaking story of her own twin daughters' late diagnosis.
Bittersweet Victory for Campaigners
Jesy Nelson described the announcement as "amazing" but "bittersweet" since the screening comes too late for her own children. Her ten-month-old twins, Ocean and Story, were diagnosed with SMA after irreversible nerve damage had already occurred, meaning they will never walk.
"This is massive," Nelson stated. "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."
Phased Rollout and Ethical Concerns
The screening program will be implemented as a phased pilot across England, testing approximately 404,000 newborns. However, 163,000 infants will not be screened to serve as a control group for comparison purposes - a decision that experts have labeled "unethical."
This approach means an estimated 11 babies per year will still receive late diagnoses. Nelson expressed concern about the geographical disparities, noting: "It's like literally a postcode lottery because it's not the whole of England."
Accelerated Timeline
The screening initiative represents a significant acceleration of previous plans. Originally scheduled to begin in January 2027, the start date was moved forward to October this year after Streeting met with Nelson and heard her personal story.
The UK National Screening Committee had previously declined to implement the £5 SMA blood test on the NHS since 2018, despite growing evidence from other countries about the benefits of early detection.
Charity Response and International Context
Giles Lomax, chief executive of charity SMA UK, welcomed the announcement while acknowledging there is more work to be done. Lomax, whose own seven-year-old twins have SMA, said: "Following years of campaigning we are delighted to see the formal announcement that screening for SMA will start in six months time in England."
The United Kingdom has lagged behind many other nations in implementing newborn SMA screening. While 65% of EU countries already test for SMA, including Poland and Portugal, the UK currently screens for only ten out of a potential fifty serious health conditions.
Available Treatments and Their Limitations
Three treatments are currently approved by the NHS to halt SMA progression: Nusinersen (Spinraza), Evrysdi, and Zolgensma. These therapies can effectively cure the condition if administered at birth, but they cannot reverse disability once nerve damage has occurred.
Nelson emphasized the transformative potential of early treatment, saying: "There are truly life changing treatments out there so no baby should be an experiment."
Regional Disparities Remain
While England moves forward with screening, significant disparities remain across the United Kingdom. Scotland has committed to screening all newborns for SMA, but no equivalent decisions have been reached in Wales and Northern Ireland, where approximately 47,000 newborns annually will remain untested.
Streeting acknowledged these challenges in correspondence with campaigners, stating: "My officials are still working through the challenges related to extending the ISE to the whole of England and I will keep you both updated of progress in this area."
Understanding Spinal Muscular Atrophy
Spinal muscular atrophy is a genetic condition caused by a fault in the SMN1 gene, which prevents proper production of SMN protein. This protein maintains the health of nerve cells that transmit signals between the brain, spinal cord, and muscles. Without it, motor neurons die off, causing muscles in the legs, chest, and arms to waste away.
The newborn screening will utilize the heel prick test, which involves collecting four drops of blood from five-day-old infants. This represents a significant expansion of the UK's current newborn screening program.
