Glivec is already used to treat leukaemia

Glivec has produced promising results as a treatment for gastrointestinal stromal tumours.

But in a draft proposal, the National Institute for Clinical Excellence suggests treatment should be stopped if results are not produced in 12 weeks.

NICE says a consultation exercise on the use of Glivec is still in progress.

I find it disgraceful that many people suffering from GIST in England and Wales could die needlessly knowing that Glivec might still work for them. Roger Wilson

At present, Glivec is the only drug available to treat GIST, a rare cancer that occurs in the wall of the stomach and small intestine, and which is highly resistant to standard therapies.

The preliminary NICE guidance approves the drug for use on the NHS, but also suggests it be stopped if quick results are not forthcoming.

It also suggests that further research is needed before it can be determined whether the drug is suitable for some patients who have some tumour sites that are responding to treatment, but others that are not.

Two organisations, GIST Support UK and Sarcoma UK have joined forces to challenge the proposals. They claim the NICE recommendation ignores the views of leading experts in the field.

In a statement, the charities said: "We find NICE's proposed decision to take away Glivec from patients with a life threatening cancer before it is possible to determine whether or not they are benefiting from the treatment shocking and unethical."

They say that it can take up to nine months to see a response to the drug on a CT scan - and only half of patients who respond to Glivec do so within three months.

They also argue that scans cannot pick up metabolic changes which may be taking place with a tumour.

Deadly restrictions

Dave Cook, a GIST patient and member of GIST Support UK, welcomed the fact that NICE had provisionally approved the use of Glivec for some patients.

But he said: "I am extremely concerned and disappointed that the approval comes with such potentially deadly restrictions.

"This will cause distress and anxiety to patients and their families living with GISTs whose access to Glivec can be a matter of life or death."

In Scotland, Glivec has been approved as a GIST treatment without restrictions.

Roger Wilson, founder of Sarcoma UK said: "I find it disgraceful that many people suffering from GIST in England and Wales could die needlessly knowing that Glivec might still work for them, whilst their Scottish neighbours are being given the best possible chance of survival and living their lives to the full.

"NICE has ignored the opinion of leading medical experts within the oncology field and trivialised the positive patient experiences of people whose lives have been transformed by Glivec."

Andrew Dillon, NICE chief executive, said guidance on the use of Glivec was still being developed, and that groups representing people with GIST and health professionals involved in their care were being consulted.

He said: "During this consultation period anyone with an interest in the guidance can comment on the draft version via the NICE website and their comments will be carefully considered."

A final decision on Glivec is due in July. The drug is already used to treat chronic myeloid leukaemia.