A powerful coalition of cancer support groups, clinicians, and MPs is to petition the UK’s Secretary of State for Health, Patricia Hewitt, to strike out guidance from the country’s cost-effectiveness body – the National Institute for Health and Clinical Excellence - on Novartis’ Gleevec (imatinib), for the treatment of gastrointestinal stromal tumour, a London conference was told.

Speaking at ‘Recent Advances and Current Issues in the Management of GIST’ – the first UK opinion leader summit to bring together all the specialties dealing with this cancer – Roger Wilson, Head of Sarcoma UK, described the current NICE guidance as “scandalous.”

The current NICE guidelines, which are not due to be reviewed until 2007, were out of date almost as soon as they were published in October 2004, says Mr Wilson. “The current guidelines are now totally invalid. They are about money, not about patient benefit or decent standards of treatment. We are seeing denial of appropriate treatment, and denial of appropriate palliative care.”

“My objective is to get the NICE guidelines set aside. We need a guidance structure for the treatment of GIST that can respond to the rapid advance of research. I also want to establish that patient benefit has primacy over health economics. The Secretary of State does actually have the power to strike out the NICE guidance, to set it aside,” he added.

Sarcoma UK is working with clinicians and MPs to prepare a petition to the Health Secretary, and also hopes to bring on board the GI surgeons group AUGIS, the British Sarcoma Group, GIST Support UK, CancerBACUP and Cancer Research UK.

The key problems with the current guidelines are that they advocate withdrawal of imatinib from patients who could still benefit, rule out dose escalation (now a licenced indication) and use invalid criteria for assessing disease progression, he added. By Ian Mason.