Make MDS drugs available, says support group

A fifth of people with MDS (blood cancer) die prematurely because the NHS won’t fund new life-extending drugs, the UK MDS Patient Support Group has claimed.

The results of a new survey show that almost a fifth (18%) 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 NICE for treatment on the NHS.

The survey, entitled The Blood Cancer Treatment Access Survey, also revealed that more than half (56%) of the 100 blood cancer experts surveyed believe that less priority is given to rarer cancers versus more common cancers.

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.

“It is ironic that the perceived constraints to availability in UK seem to be based exclusively on inadequate finance. Inevitably, postcode inconsistency in supply reveals some patients with access to new drugs ahead of a NICE decision to license to the NHS. Other local health authorities choose to allow patients to die prematurely.”

The MDS UK Patient Support Group has called upon the Department of Health to make proven treatments available to all patients whose lifespan may otherwise be unnecessarily curtailed.

The survey also revealed that 89% of the blood cancer experts surveyed have been unable to provide treatments for their blood cancer patients that could have potentially extended the patients’ survival, as these treatments were not readily available on the NHS or not yet approved by NICE.

In addition, 12% of these experts feel that it would be unwise to tell some of their patients about new treatments that are not yet approved by NICE, due to the risk of distressing them.

Ghulam Mufti, Professor of Haemato-oncology at King’s College Hospital and Chairman of the UK MDS Forum, said: “These results highlight the concerning gaps in access to treatments that can prolong and improve the lives of patients living with MDS and other blood cancers. 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 – a process that can take up to three years from when the drug is first licensed in the UK.”

Some blood cancer treatments featured in the survey are currently going through the NICE review process.