The recent revelation that former Little Mix singer Jesy Nelson's twins have spinal muscular atrophy type 1 (SMA1) has brought a long-simmering issue to the forefront: the lack of SMA screening for newborns. But here's where it gets controversial—families affected by SMA claim their pleas for government action have been ignored for years, until a celebrity spotlighted the issue.
When Jesy Nelson shared her twins' diagnosis, a rare genetic disorder causing muscle wastage, it became headline news. Health Secretary Wes Streeting responded, acknowledging the need for faster diagnosis. However, for many SMA-affected families, this response was a bitter pill to swallow, as they felt their own efforts had been overlooked.
Portia Thorman, an advocate at SMA UK, has been advocating for newborn screening for years, writing numerous letters to Streeting. Her son, Ezra, was diagnosed with SMA1 as a newborn after a struggle to get timely treatment. Thorman feels that the lack of response from parliamentarians is due to SMA being a rare disease, not affecting a large enough portion of the population to garner political attention.
Thorman mentions that Streeting was even invited to visit a pilot study on SMA screening at Oxford University but declined. This, she believes, is a neglectful act, considering the years of advocacy by families and charities.
Amy Moffatt, mother to a son with SMA1, expresses sadness that it took a celebrity's platform to raise awareness, despite years of tireless campaigning by affected families. Her son received gene therapy, preventing further deterioration, but he still requires extensive care and adaptations, which come at a high cost.
SMA, incurable, leads to muscle weakness and wastage, impacting mobility, breathing, and swallowing. Type 1 is the most severe, with untreated babies often not surviving past two years. While England doesn't screen newborns for SMA, Scotland will start in April, and countries like the US, Germany, Japan, and Ukraine already have screening programs.
Molly Everitt, a student with SMA type 3, criticizes the media's negative portrayal of the condition, emphasizing that many with SMA lead full lives. She finds it surreal that SMA is now in the spotlight, thanks to Nelson, after years of being unheard.
Charlie Mosey, mother to a son with SMA1, appreciates Nelson's role in raising awareness but laments that it took a celebrity to get media attention. Her family has raised significant funds for SMA clinical trials, and her son was among the first to receive gene therapy.
The Department of Health and Social Care acknowledges the tireless campaigning of SMA UK and affected families, promising to work closely with them. They've recommended a large-scale study and are screening hundreds of thousands of babies as part of an NHS trial.
And this is the part most people miss—while the celebrity spotlight has accelerated the conversation, it raises questions about the power dynamics of advocacy. Should the voices of everyday families carry as much weight as those of celebrities? How can we ensure that all voices, regardless of fame, are heard in healthcare policy discussions? Share your thoughts below!
