The Government is contemplating the possibility of conducting screenings for a muscle wasting disease in all newborns, following a successful campaign by the Mirror. Health Secretary Wes Streeting is exploring the potential expansion of an NHS pilot program to include universal screening for spinal muscular atrophy (SMA) as part of the routine heel prick test. Currently, one third of newborns are not screened to serve as a control group for comparison, a decision criticized by experts as “unethical.”
Advocates, including former Little Mix singer Jesy Nelson, have urged for comprehensive SMA screening for all babies. Mr. Streeting mentioned that preparations are underway for a large-scale trial within the NHS next year to screen hundreds of thousands of babies for SMA, aiming to gather essential evidence for a national screening program. He also expressed the intention to expedite the evaluation process and potentially involve all newborns in the screening.
The UK National Screening Committee (UKNSC) previously opted against including SMA in the newborn screening program in 2018. However, with the availability of three effective treatments on the NHS since 2019 that can significantly mitigate the effects of SMA if administered early, the debate on newborn screening has resurfaced.
While a full rollout of screening may not occur before 2031 as per the current plan, NHS Scotland has decided to implement newborn screening for SMA starting from the spring. On the contrary, Wales and Northern Ireland are not currently planning to include SMA screening in their routine tests.
There is a call from experts and the charity SMA UK to reconsider the partial screening approach, arguing that international evidence supports the benefits of screening for saving lives and reducing healthcare costs. Mr. Streeting emphasized the importance of advancing SMA treatments to ensure affected children not only survive but thrive.
The Mirror has been actively advocating for SMA awareness since 2021, particularly highlighting the potential of gene therapy like Zolgensma in treating SMA. The push for newborn screening intensified in June 2024 after featuring the story of Arthur Morgan, the first NHS patient to receive Zolgensma.
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