Patients in cancer drug plea

Cancer patients are campaigning to stop a promising new drug from being denied to most NHS patients.

They have a week to persuade the body that makes decisions on the cost effectiveness of medicines to change its mind.

What Nice are saying is that you have to start dying before you get the treatment that may keep you alive

Elizabeth Rees, support group

The drug, Glivec, has gone through trials for treating a rare form of leukaemia.

The drug's manufacturer, Novartis, says it can offer "substantial improvements" to patients with chronic myeloid leukaemia (CML).

But the National Institute for Clinical Excellence (Nice) said in a preliminary report this month that NHS patients should only get the drug if they are in the late stages of the illness.

The final deadline for receiving new evidence that might alter this position is 4 June.

'Immoral'

Elizabeth Rees, a CML sufferer who runs a support group, is urging patients to sign a petition to secure NHS funding of the drug for all patients.

"Without Glivec I wouldn't be here today," she told BBC News Online.

"What Nice are saying is that you have to start dying before you get the treatment that may keep you alive.

"The thought that this CML drug is going to be denied to patients is so shocking, I find it immoral."

Ms Rees, aged 49, who runs the internet-based CML support, took part in clinical trials of the drug.

She was offered it after suffering side effects from the only other available treatment, a type of interferon.

Patients who took part in the trials will be able to keep taking Glivec without having to pay under a special agreement.

My view is that Nice have got to reconsider and listen to the real experts

Prof Gordon McVie, Cancer Research UK

But many future patients in England and Wales will be denied the treatment if the provisional assessment by Nice is not overturned.

The situation is different in Scotland, as Ms Rees, of west London, pointed out.

"I am funded but if my neighbour got CML and was interferon tolerant they would have to move to Scotland to get it," she told BBC News Online.

'Listen to patients'

The watchdog body the Scottish Medicines Consortium has supported the use of Glivec at all stages of CML, said manufacturer Novartis.

The Swiss-based pharmaceutical company said in a statement that Nice's decision to limit Glivec use to the accelerated phase of the illness contradicted expert opinion.

The view is shared by some doctors. A group of specialists, led by Professor John Goldman, from the Hammersmith Hospital, London, has written to the medical journal The Lancet in protest at Nice's recommendation.

The cancer research charity Cancer Research UK is also urging Nice to change its mind.

Director Professor Gordon McVie told BBC News Online: "My view is that Nice have got to reconsider and listen to the real experts who are writing to the Lancet and writing to them and listen to patients who have had the drug."

from BBC News