MDS patients failed by NHS

Adding weight to a previous editorial published in Cancer Drug News (see Issue No. 377 - "Is NICE depriving UK patients' options?"), the results of a new survey, launched by the UK MDS Patient Support Group, have shown that almost one-fifth (18 per cent) of patients suffering from myelodysplastic syndromes (MDS) could have lived for longer if they had been able to access treatments that are currently not approved by the UK's National Institute for Health and Clinical Excellence (NICE) for treatment on the NHS. According to current estimates, just fewer than 2,000 new cases of MDS are diagnosed in the UK each year.

The survey of 100 haematologists from England, Wales and Scotland revealed that 56 per cent of blood cancer (BC) experts believe that less priority is given to rarer cancers versus other common cancers. The majority of BC experts (89 per cent) surveyed have faced situations where they have been unable to provide treatments for their BC patients that could have potentially extended their patients' survival as these treatments were not readily available on the NHS or not yet approved by NICE.

David Hall, Chairman of MDS UK Patient Support Group, commented: "these results are 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 treatments have been thoroughly tested and their efficacy demonstrated. It is ironic that the perceived constraints to availability in the UK seem to be based exclusively on inadequate finance."

The MDS UK Patient Support Group has called upon the Department of Health to re-address this inequality by making proven treatments available to all patients whose life span may otherwise be unnecessarily curtailed. These results have highlighted the gaps in access to treatments that can prolong and improve the lives of patients living with MDS and other BCs. Despite significant advances in the treatment of MDS, the majority of patients cannot get access to and, in some cases, are not even informed about new life-extending drugs until they have been appraised and approved by NICE. The impact of waiting even a month for treatment for MDS can result in a life or death situation.

Hilary Jackson, Cancer Research UK's policy manager, noted that: "where NICE has not provided advice on a particular drug, it is up to Primary Care Trusts (PCTs) to decide which they will fund...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."

It seems concerning that patients are not getting access to drugs that could extend their lives, which have been thoroughly investigated and their efficacy shown, and, in some cases, are available in comparable countries.

Alice Rossiter
Cancer Drug News Editor