Myeloma is incurable but treatable
Patient groups are calling for a pharmaceutical firm to cut the cost of a bone marrow cancer drug so it can be used by the NHS in England and Wales.
Drug advisers the National Institute for Health and Clinical Excellence said lenalidomide was not cost effective for myeloma in a draft ruling.
Myeloma UK, Macmillan Cancer Support and Leukaemia CARE have reacted by putting pressure on the manufacturer.
They want to see a discount given or refund offered when it does not work.
A refund scheme already exists for the bone marrow cancer drug Velcade.
The NHS pays for the drug, which costs about £18,000 per patient, only when it works.
Patients showing minimal or no response are taken off it - and the costs refunded by the manufacturer Janssen-Cilag.
The myeloma campaigners would like to see a similar scheme for lenalidomide (Revlimid), a treatment which costs somewhere in the region of £4,500 per month, or just a plain discount.
The call comes after NICE chairman Sir Michael Rawlins suggested charities should do more to quiz firms about the cost of drugs.
He has accused pharmaceutical companies of driving up the price of medicine to boost their profit margin.
The charities acknowledged that Revlimid was expensive, but said it was capable of prolonging the lives of myeloma patients by up to three years.
Eric Low, chief executive of Myeloma UK, said: "NICE is explicit in its draft recommendation that Revlimid is clinically effective.
"This is yet another instance of patients losing out because NICE and the pharmaceutical company have failed to effectively interpret an impressive set of data in what is no more than a game of professional one-upmanship.
"There is now a window of opportunity for NICE and the company to demonstrate they are capable of dealing with a complex appraisal and righting this wrong decision for patients."
Rachel Rowson, of Macmillan Cancer Support, said: "Revlimid can give some myeloma patients extra time which can be extremely valuable to them and their families.
"We would urge the pharmaceutical company and the Department of Health to work together to reduce the cost of this drug for the NHS."
She said until a final decision was made by NICE, there was no reason why clinicians should not continue to prescribe Revlimid where appropriate.
Andrew Robertson, of Celgene, the drug's manufacturer, said: "Celgene is committed to working with NICE, the Department of Health and the myeloma community to ensure that the final NICE guidance will be positive and patients with myeloma can have the opportunity to live longer with their cancer controlled."
Professor Peter Littlejohns of NICE said: "The Institute will consider any pricing scheme proposed by the manufacturer once they have been reviewed and considered suitable for the NHS, by the Department of Health."
The health watchdog, which sets the agenda for funding new treatments in England and Wales, will consult on Revlimid over the next three weeks before making its final recommendation in January.
Myeloma is an incurable bone marrow cancer affecting around 20,000 people in the UK.