a day ago
‘Cruel' postcode lottery to access life-changing drug
Parents of children with Duchenne muscular dystrophy are struggling to access a free drug, givinostat, on the NHS due to limited availability and a " postcode lottery" system described by a charity as 'cruel'.
Givinostat, which slows the progression of Duchenne and prolongs walking ability in children, is offered at no cost by a drug firm while it awaits NHS approval.
Some NHS trusts are reportedly delaying or refusing access, citing monitoring costs (approximately £1,900 per patient annually) as a barrier, while others are drawing up priority lists.
Duchenne UK, a charity, is assisting families in their fight for givinostat, while the government maintains the decision rests with individual NHS trusts.
NHS England says that the first NICE committee meeting to consider the treatment is scheduled for July, and it is ready to explore fast-tracking access if the manufacturer offers a cost-effective price.
