'A price tag should never be put on to the life of a child'

Health body’s cruel blow after drug triumph

- Julia Etherington

PARENTS who fought for access to life-lengthening drugs for terminally ill children have won — but NHS bosses will deny them for future cases.

There are 32 youngsters in England diagnosed with CLN2 Batten disease a neurodegenerative disorder that causes seizures and dementia, and robs patients of their mobility, speech, sight and ability to swallow.

A National Institute for Health and Care Excellence recommendation will let patients continue receiving cerliponase alfa, marketed as Brineura.

It slows the disease’s progress and costs £520,000 per child, each year.

But the draft guidance adds that patients diagnosed after December this year will be denied the drug as it is not “cost effective”.

The Carroll family’s battle for access to the drug over several years has been supported by the Daily Express.

Lucy Carroll, 40, and Mike, 41, of Poynton, Cheshire, are parents to Ollie, 14, and Amelia, 12, who both live with Batten disease.

Lucy said: "After years and years of fighting, the mental torture, the financial strain of having to pay legal fees and the endless tears and fear, we can finally live a life where our children can have continued access to a treatment that is slowing down the progression of the disease and improving their quality of life.

"The whole of the current CLN2 Batten disease community are today finding out that their babies are safe!"