A powerful call to action has been made by Jesy Nelson, a former Little Mix singer, who is leading a petition and joining forces with the Mirror and SMA UK to demand a crucial change in newborn screening practices. Jesy's personal experience with her twins, who were diagnosed with spinal muscular atrophy (SMA), a devastating muscle-wasting disease, has driven her to advocate for a simple blood test that could have prevented their condition.
A Fight for Early Detection
Jesy's petition, which has already gained over 40,000 signatures, aims to add an SMA blood test to the NHS heel prick test given to all newborns. This test, if administered at birth, can identify the faulty gene or provide a replacement for the key protein, effectively curing the condition before irreversible muscle damage occurs.
But here's where it gets controversial: current plans for an NHS pilot suggest that only two-thirds of newborns in England will be tested, with the remaining third acting as a "control group" for comparison. Experts have criticized this approach as unethical, especially when three effective treatments are already available on the NHS.
The Impact of Early Intervention
Babies diagnosed and treated early can avoid the need for wheelchairs, breathing machines, and tube feeding. With proper treatment, many can achieve developmental milestones that would have been impossible without intervention. Screening allows for early identification, giving families and clinicians the chance to act swiftly and provide the best care.
And this is the part most people miss: the UK National Screening Committee initially decided against adding SMA to the newborn screening program in 2018, but since 2019, three major treatments have been introduced that can virtually eradicate the condition.
A Global Perspective
While the NHS pilot plan may delay full screening until 2031, Scotland has recently decided to move forward with newborn screening for SMA, adding it to their routine heel prick test starting this spring. Experts argue that there is sufficient international evidence to justify immediate implementation of SMA screening for all newborns, as the US and most of Europe already include it in their screening protocols.
Health Secretary Wes Streeting has promised to explore the possibility of expanding the pilot to include all babies, acknowledging the need for further action.
A Community Effort
SMA UK has set up a text line for those who wish to support families affected by SMA. By texting JESY5 to 70470, you can donate £5 to SMA UK and join this important cause.
Jesy's petition is a powerful step towards ensuring that no family has to face the devastating impact of SMA without early detection and treatment. Will you join this movement and help make a difference?
Sign the petition, share it with your network, and let's work together to drive real change.
