NHS England defers decision on Morquio drug by '12-16 weeks'
NHS England has today deferred a decision on Vimizim - the drug required by six-year-old Morquio syndrome patient Sam Brown from Otley - by a further 12-16 weeks.
Six-year-old Sam protests over drug funding at Westminster
People with ultra rare genetic diseases have protested at Westminster in their continuing campaign to try and persuade the health service to keep funding a drug which could change their lives.
They include six-year-old Sam Brown, from Otley, who has Morquio Syndrome.
It is a rare condition that means his skeleton does not grow properly, but his internal organs do.
Sam has been receiving a drug called Vimizin that helps him live a normal life.
It is expensive but it had been provided free by the drug company which produces it.
However, that deal is coming to an end.
Jon Hill reports:
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