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Jesy Nelson calls for newborn SMA screening as Health Secretary responds
Summary
Health Secretary Wes Streeting said he would look into Jesy Nelson's call for newborn screening after her twin babies were diagnosed with spinal muscular atrophy (SMA), and the UK Screening Committee is planning a regional pilot.
Content
Jesy Nelson has urged the UK to add screening for spinal muscular atrophy (SMA) to the newborn heel-prick test after her twin babies were diagnosed with the condition. The Health Secretary, Wes Streeting, said he would look into her call and praised her for speaking about the situation. Reporting notes that treatments are most effective when given at or shortly after birth. The UK Screening Committee is planning a pilot to screen babies for SMA in some parts of England while NHS Scotland has already rolled out screening for all newborns.
What is known:
- Jesy Nelson’s twin babies were diagnosed with spinal muscular atrophy, which she says prompted her call for newborn testing.
- Health Secretary Wes Streeting has said he will look into the request and highlighted interest in better use of genomic medicine.
- Gene therapies can prevent progression if given before irreversible nerve damage occurs, according to the reporting.
- The UK Screening Committee is planning a regional pilot for SMA screening; national rollout timing could take years and is undetermined at this time.
Summary:
The Health Secretary’s response has brought national attention to calls to add SMA to newborn screening. The Committee plans a regional pilot and Mr Streeting has said he will review screening and genomic medicine use; national rollout timing remains undetermined at this time.
Sources
These are the countries where SMA screening is offered as standard
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