Labor MP Wes Streeting has committed to examining pop star Jesy Nelson’s plea for newborn screening for a rare condition that can lead to infant paralysis.
The Health Secretary responded to the former Little Mix singer’s disclosure that her twin babies, Ocean Jade and Story Monroe Nelson-Foster, were diagnosed with spinal muscular atrophy (SMA). Families of paralyzed infants are urging the government to include a £5 blood test for SMA in the standard newborn screening.
Advancements in gene therapies now allow for the prevention of paralysis in newborns with SMA if administered promptly at birth to prevent irreversible nerve damage. Mr. Streeting expressed his empathy for Jesy Nelson’s situation and praised her advocacy for improved screening measures.
Recent reports revealed that approximately one baby per week in the UK is affected by SMA due to delays in SMA testing by the NHS. Jesy Nelson shared her family’s challenging journey in an Instagram video, highlighting the importance of early detection through a simple heel prick test.
While babies without a family history of SMA are often diagnosed late in England, many countries worldwide have already incorporated SMA screening into their newborn protocols. The UK Screening Committee is considering a pilot program for SMA screening in select areas, with nationwide implementation potentially taking years. In contrast, NHS Scotland has already implemented SMA screening for all newborns.
Mr. Streeting emphasized the need for timely diagnosis and the utilization of genomic medicine to improve screening measures for SMA, echoing Jesy Nelson’s concerns.
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