28 February 2019 - Clinical experts deciding whether to fund a drug that would prolong the life of babies with spinal muscular atrophy, say it would also increase the burden of care if they lived longer - though not for loved ones.

Currently babies with type I spinal muscular atrophy, a genetic disease affecting the part of the nervous system that controls voluntary muscle movement, die by about age 2.

International trials have shown that nusinersen [Spinraza] can extend a child's life by up to five years and the drug is funded and used in Scotland, Britain, Australia and America.

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