THE PARENTS of a boy who has a muscle-wasting condition are delighted at the decision to recommend a drug on the NHS to help their son.
Dominic and Tammy Wright have been tirelessly campaigning against the judgement deeming the drug spinraza too expensive to use on the NHS by the National Institute for the Health Care Excellence (NICE).
The couple, from Lower Darwen, wanted the drug to be available to help their son, Leyton, who was diagnosed with spinal muscular atrophy (SMA) when he was a baby.
Leyton, now six, has battled with the incurable condition and has never been able to walk independently and uses a special adapted wheelchair to move around.
The family campaigned against the decision outside NICE’s headquarters in March when an appraisal meeting on the drug was taking place.
However on Tuesday NICE announced it would reverse its decision and recommended spinraza, also known as nusinersen, as standard treatment for all patients with SMA
Mr Wright, 28, said: “We were told the decision would be made public at midnight on Tuesday so we stayed up to wait.
“It is the best news we’ve had in a while.
“There will be clinical trials in Paris and it is still in its early days but it is excellent for the whole SMA community who don’t have treatment at present.
“All the hard work that has been put in by everyone, especially the TreatSMA campaign, has paid off.”
Mr Wright said if his son could have access to the drug it may help him maintain his current strength, as it is the only treatment that has had an effect on his condition.
Each dose of spinraza costs £75,000 and four are required in the first few months of treatment with regular follow-up doses every four months.
Mr Wright said: “SMA is the biggest genetic killer of children under two years old – it affects the muscles and respiratory system.
“As a result of this, Leyton has never walked nor crawled, and we’re slowly starting to see him lose other abilities such as raising his arms above his head.”
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