The government is contemplating the possibility of screening all newborns for a degenerative muscle disease, marking a significant development in response to the Mirror’s advocacy efforts. Health Secretary Wes Streeting is exploring the expansion of an NHS pilot program that currently screens some infants for spinal muscular atrophy (SMA) to encompass all newborns through the routine NHS heel prick test. Presently, approximately one third of newborns, totaling around 163,000 annually, are not screened to serve as a control group for comparison, a decision criticized as “unethical” by experts.
Following a meeting with former Little Mix singer Jesy Nelson, whose twin babies were diagnosed with SMA, Mr. Streeting acknowledged the compelling argument made by campaigners for broader screening. Plans are underway for a large-scale NHS trial starting next year, aiming to screen hundreds of thousands of babies for SMA to gather essential evidence supporting a nationwide screening initiative.
Although the UK National Screening Committee (UKNSC) initially excluded SMA from the newborn screening program in 2018, the availability of three effective treatments on the NHS since 2019 has shifted the landscape. These treatments target the faulty SMN1 gene responsible for SMA, either correcting the gene or providing a substitute protein to prevent muscle degeneration.
Despite the therapeutic advancements, immediate implementation of a £5 blood test for SMA at birth was rejected by the UKNSC. Instead, an NHS pilot program is being planned to screen 404,000 newborns in over two-thirds of England annually, excluding 163,000 children in specific regions for comparison purposes. This approach delays full screening implementation until at least 2031, with 16 children born with SMA in the UK since 2019 succumbing to the condition.
Conversely, NHS Scotland has decided to proceed with newborn SMA screening, integrating it into the routine heel prick test starting in spring. However, Wales and Northern Ireland currently do not include SMA screening in their plans.
Experts and SMA UK charity argue that an NHS pilot excluding some babies from SMA screening is redundant, given international evidence supporting the life-saving and cost-effective nature of screening. Mr. Streeting emphasized the progress made in expanding treatment options for SMA, aiming for children affected by the condition to not only survive but thrive.
The Mirror has been advocating for SMA awareness since 2021, notably highlighting the introduction of Zolgensma gene therapy on the NHS as a potential cure. This groundbreaking therapy, administered through a one-time injection, delivers a healthy SMN1 gene copy to the brain, halting nerve cell degeneration.
In June 2024, the Mirror featured an interview with the father of Arthur Morgan, the first NHS patient to receive Zolgensma, underscoring the call for newborn SMA screening.