The Velcade Three
Three friends fight 'ill-informed' ruling against cancer drug
THREE women who met as cancer patients are planning a joint legal action to win access to Velcade, a drug for treating multiple myeloma.
The “Velcade Three” - Jacky Pickles, Janice Wrigglesworth and Marie Morton, from Keighley in West Yorkshire - are among hundreds who will be denied access to the drug if the National Institute for Health and Clinical Excellence (NICE) sticks to its ruling that it is not cost-effective.
Velcade is the first new treatment for multiple myeloma in more than ten years and has been licensed for more than two years for patients who have relapsed.
The drug is available in Scotland, Wales and Northern Ireland and throughout the rest of Europe. Health insurers such as BUPA and PPP pay for it because they believe that it is effective.
But primary care trusts in England take their cue from NICE, whose appraisal committee will hold its final meeting next week. Its consultation document, published last month, shocked specialists in the disease.
The International Myeloma Foundation said that the ruling was “ill-informed, unjust and unfair”.
Eric Low, the chief executive of the British branch, said at the time: “This is an extremely disappointing decision that has sent shockwaves through the myeloma community. Failure to have this preliminary recommendation overturned would represent a catastrophic blow.”
Mrs Pickles, 44, said yesterday: “We're waiting for the final guidance from NICE. Hopefully it will change its mind. But if it doesn't, we're going to look to legal action.
We're going to go as far as we can, for each other's lives and for every other myeloma sufferer. Velcade is the best thing for myeloma for four decades.”
Mrs Pickles, a midwifery sister at Bradford Royal Infirmary, had the disease diagnosed five years ago and has undergone chemotherapy, a bone marrow transplant and a course of thalidomide, the drug that caused birth defects in the 1960s but which has been reborn as a myeloma treatment. All worked for a while before her condition worsened again.
Last October she was put on a trial of Velcade, which costs £18,000 for the full eight cycles, and was restored to normal. “That trial did well for me, but I could need the drug again at a later stage,” she said.
She met Mrs Wrigglesworth, 59, and Mrs Morton, 57, while having treatment and they are giving each other support.
We're in this together,” Mrs Pickles said.
The NICE analysis found that the claims made by the drug's manufacturer, Janssen-Cilag Ltd, were not justified by the evidence.
One trial showed a 41 per cent reduced risk of death in the first year of treatment. But the NICE view was that the benefits did not meet criteria set for NHS prescription.
Andrea Sutcliffe, who led the appraisal, said: “The committee concluded that the position of bortezomib [Velcade] in care for people with multiple myeloma is uncertain at present and needs to be established more clearly before it can be recommended for general use on the NHS.”
Gareth Morgan, professor of haematology at the Royal Marsden Hospital in London, said: “Myeloma is the Cinderella of cancers. It doesn't receive anywhere near the same level of funding that other cancers do.
The evidence suggests, both clinically and cost effectively, that Velcade is best used at first relapse. There is no other licensed treatment in this area. We absolutely need this drug approved.”
Copyright © The Velcade Three, 2010.