Two sets of parents of children with Batten disease had been prepared to take their fight for treatment to the High Court before the NHS agreed.
NHS steps in to offer to pay for drug for rare condition
The NHS has agreed to fund a drug for children with a rare degenerative disease weeks before families were due to go to court.
Two sets of parents of children with Batten disease had been prepared to take their fight for the drug cerliponase alfa (Brineura) to the High Court.
NHS England announced on Wednesday that an agreement on price had been struck with the drug’s manufacturer Biomarin.
The National Institute for Health and Care Excellence (Nice) had previously said it could not be certain the drug was value for money.
25 - 40 children live with Batten disease in the UK
Batten disease is an incurable illness which affects the nervous system, causing seizures, visual impairment, mobility loss and early death.
It usually starts in childhood, with an estimated 25 to 40 children living with the condition in England.
NHS England said cerliponase alfa would be offered to sufferers not currently receiving treatment by Christmas at the latest.
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