The Velcade Three
Cinderella cancer' women plan court battle in quest for drug
Three women who met as cancer patients are planning a joint legal action in an attempt to win access to Velcade, a drug that may help treat the disease.
The “Velcade Three” - Jacky Pickles, Janice Wrigglesworth and Marie Morton, from Keighley - 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, which restricted the use of the drug to clinical trials only for patients who have not relapsed.
Velcade is the first new treatment for multiple myeloma - cancer of plasma cells in the bone marrow - in more than 10 years and has been licensed for over two years for patients who have relapsed.
The drug is available in Scotland, Wales and Northern Ireland and throughout the rest of Europe. But primary care trusts (PCTs) 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 condemned the ruling. Eric Low, chief executive of the UK branch, said: “The entire myeloma community is up in arms about Nice's decision. It is hard not to feel that we are being discriminated against as a less well-known, rarer cancer because of the recent positive rulings on a number of big cancer drugs, such as Herceptin, which will undoubtedly put enormous pressure on NHS budgets.”
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.”
Mrs Pickles, 44, said the women were looking at taking legal action against their PCT to ensure they get the drug when they need it.
“We are looking into legal aid at the moment,” she said. “We cannot afford to pay for this ourselves, but we cannot just sit and watch Nice take our future away. We will take this all the way to the European Court of Human Rights if we need to.”
Mrs Pickles, a midwifery sister at Bradford Royal Infirmary, was diagnosed with the disease five years ago. Last October she was put on a trial of Velcade, which costs about £18,000 for the full eight cycles, and was apparently restored to normal.
“With myeloma there is no cure - we at best hope for a long plateau phase - but this drug gives us quality of life,” she said. “It is allowing me to live and see the things I want to see.”
She met Mrs Wrigglesworth, 59, and Mrs Morton, 57, while having treatment and they are giving each other support.
Mrs Wrigglesworth said it was ridiculous a “postcode lottery” existed in determining who got Velcade.
Copyright © The Velcade Three, 2010.