18% of patients suffering from myelodysplastic syndromes (MDS), a type of blood cancer, could have lived longer if they had had access to drugs which are currently not approved by the National Council for Health and Clinical Excellence (NICE), a new survey reports.

Moreover, 56 of 100 haematologists say they believe lower priority is given to rarer cancers than to other cancers, according to the study, which was conducted by the UK MDS Patient Support Group.

The Group’s chairman, David Hall, said the findings were “alarming and distressing. Denying any patient access to life-extending blood cancer drugs is immoral and contradicts the very principles upon which the NHS was founded. These new treatment have been thoroughly tested and their efficacy demonstrated,” he said, and UK patients’ lack of access to them seems to be based “exclusively on inadequate finance.”

89% of the blood cancer experts surveyed for the report said they have faced situations in which they have been unable to provide treatments for their patients that could have potentially extended their survival because the drugs were either not readily available on the NHS or had not yet been recommended by NICE.
And 12% of the experts polled felt that it would be unwise to tell some of their patients about these new treatments, largely on the grounds of budgetary constraints and the risk of upsetting and distressing patients by informing them about treatments which they cannot have.

“Despite significant advances in the treatment of MDS, the majority of patients cannot get access to and, in some cases, are not informed about, new life-extending drugs until they have been appraised and approved by NICE – a process that can take up to three years from when the drug is first licensed in the UK,” commented Ghulam Mufti, professor of Haemato-oncology at King’s College Hospital and chairman of the UK MDS Forum.

“Patients with blood cancers require effective treatment to improve their chances of survival. The impact of waiting even a month for treatment can result in a life-or-death situation,” he added.

Hilary Jackson, policy manager at the charity Cancer Research UK, pointed out that where NICE has not provided advice on a particular drug it is up to Primary Care Trusts (PCTs) to decide what they will fund, but this can be complex, and variations across PCTs are “genuinely concerning.”

"Without NICE approval, we need a fair approach to ensure that doctors, patients and the PCTs themselves are clear about how funding decisions will be made. NICE must also work as quickly and effectively as possible so that PCTs can provide treatments deemed cost-effective,” said Ms Jackson.

"Patients need to know that they can have fair access to drugs, especially those shown by NICE to be both clinically and cost effective, regardless of where they live,” she added.