27 Feb 2019

Children with rare and fatal condition refused drug treatment

Health and Social Care Correspondent

The heartbreak of knowing your child has a rare, incurable disease, then finding out a drug is available which might help to slow its progression, before that glimpse of hope is snatched away.

The anguish faced by families of children with Batten disease, after the health watchdog NICE decided not to recommend a new treatment on the NHS in England, saying it was just too expensive.