THE parents of a 16-year-old York girl who died of bone cancer have attacked a decision to prevent the NHS funding a new treatment for the disease.

Bethan Copland’s parents, Chris and Hilary, said providing treatment for an illness which primarily affects young people should be a top priority.

They said they were appalled by draft guidance by the National Institute for Clinical Excellence (NICE), opposing the use by the NHS of a new treatment called mifamurtide.

They said the drug was used throughout Europe to treat osteosarcoma – not Bethan’s illness, but one very similar to it – and it had been demonstrated to improve survival chances by almost a third.

Mr Copland said: “The objection appears to be on cost grounds and is related to the issue of the costs of research and production for drugs with a small market.”

He said the Bone Cancer Research Trust was appealing to NICE, and asking supporters to write to Health Secretary Andrew Lansley and their MP to ask them to voice objections.

The couple, who live off Fulford Road, York, have been to see city MP Hugh Bayley, who said he intended to investigate NICE’s decision.

The Press reported last month how Bethan, a Fulford School pupil, died after fighting a three-year battle against the illness. Friends and family paid tribute to her quirky sense of humour, unique fashion sense and her smile.

Mrs Copland said the difficulty in bringing forward research into primary bone cancer was the tiny commercial market that such a rare illness offered pharmaceutical companies.

She said: “But a purely financial calculation of return on investment does not, of course, take into account the number of life years saved when a child is cured, perhaps 60 or more: in effect an entire lifetime.

“The message we have got again and again from people who knew Bethan is of how much she had to give. We cannot afford to squander that kind of potential and that is why finding a cure and funding treatment should be the highest priority.”

The couple urged people to go to bcrt.org.uk/bcrt_statement_re_nice.php for more information.

The couple’s comments were echoed by Angela Long, whose son Jonathan, 22, required leg surgery after suffering osteosarcoma, but is now in remission.

She said it was wrong for such treatments to be denied to patients.

Health body explains treatment doubts

NICE said its draft guidance was not recommending mifamurtide for NHS use in combination with post-operative chemotherapy for osteosarcoma.

A spokesman said although evidence showed it might be more effective than chemotherapy alone, there was “substantial uncertainty” around how much extra benefit it could offer over and above currently available treatments, especially considering the exceptionally high cost the NHS was being asked to pay. Sir Andrew Dillon, the chief executive of NICE, said the NHS had finite resources.

This meant NICE could only recommend treatments shown to work better than currently available treatments, taking into account possible side-effects, and representing good value for money for the NHS for the amount of benefit it offered patients. NICE is expected to publish final guidance later this year.