Parents of 10-year-old twins with same debilitating illness describe ‘nightmare’ NHS battle
‘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.