Support group questions availability of life-extending drugs

In collaboration with the Press Association

A support group for patients with blood cancer has claimed that many patients die prematurely because they are unable to obtain life-extending drugs on the NHS.

The National Institute for Health and Clinical Excellence (NICE) reviews all new drugs and treatments before issuing guidance on whether or not they should be available on the NHS.

Until such guidance is published, primary care trusts (PCTs) are allowed to decide on a local level whether they will provide unapproved treatments.

According to the MDS UK Patient Support Group, almost a fifth - 18 per cent - of patients with a type of blood cancer called myelodysplastic syndromes (MDS) could have lived for longer if they had been given treatments that are not yet approved for NHS use.

The majority of blood cancer experts surveyed by the group - 89 per cent - revealed that they have been in a situation where they were unable to give their patient a treatment that could have extended their life because it was either not readily available on the NHS or not yet approved by NICE.

Twelve per cent also said that it was probably better not to inform patients about new life-extending treatments because of budgetary constraints and the risk of causing distress when patients learn they cannot have the drugs.

The survey of 100 haematologists from England, Wales and Scotland also revealed that 56 per cent of experts believe common cancers are given higher priority over rarer forms of the disease when it comes to approving new drugs.

David Hall, chairman of the MDS UK Patient Support Group, described the findings as "alarming and distressing".

He claimed that denying a patient access to life-extending drugs "contradicts the very principles upon which the NHS was founded", particularly as the new treatments have been "thoroughly tested and their efficacy demonstrated".

Ghulam Mufti, professor of haemato-oncology at King's College Hospital and Chairman of the UK MDS Forum, commented: "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."

Professor Mufti pointed out that waiting even a month for treatment "can result in a life or death situation" for patients with blood cancers.

Hilary Jackson, Cancer Research UK's policy manager, said: "It is always disappointing to hear that patients are not getting access to drugs that might extend their lives.

"Where NICE has not provided advice on a particular drug it is up to Primary Care Trusts (PCTs) to decide which they will fund. 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.

"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."