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  1. ITV Report

NHS England to fund treatment for children with muscle-wasting condition

The mother of a seven-year-old boy with spinal muscular atrophy has said a new drug could transform his life.

George Lockley uses a wheelchair because the disorder means his muscles are getting weaker.

But the medicine's watchdog, the National Institute for Health and Care Excellence has now approved the use of a drug Spinraza which his mother believes could massively improve his life.

As George has grown taller his trunk muscles have struggled to support his spine and he's started to develop scoliosis which has ben very hard to watch him deteriorate.

So, for me, for the fact that he's not going to get any weaker is incredible!

– LIZ LOCKLEY, George's mother
  • Spinal muscular atrophy affects the nerves in the spinal cord, making muscles weaker and causing problems with movement, breathing and swallowing
  • Where it develops in babies and toddlers, it can significantly reduce life expectancy
  • Between 600 and 1,200 children and adults are currently living with the condition in England and Wales
  • While not a cure, trials have shown that nusinersen can slow the effects of SMA in some cases, allowing babies and toddlers to develop stronger muscles and survive for longer without breathing support

This promising treatment has the potential to be life-changing for children and their families. The NHS has now reached one of the most comprehensive deals in the world, which allows us to assess real-world evidence of its long-term benefits. This latest deal coming on the heels of a number of other recent successful negotiations demonstrates that there is no reason for other companies not to show equivalent flexibility in order to benefit NHS patients, taxpayers and indeed themselves.

– Simon Stevens, NHS England chief executive