MP understanding of health bodies and the evaluation of medicines for use on the National Health Service has been found to be seriously lacking by a new survey commissioned by cancer drugmaker Celgene.

Among the shock findings, two-thirds of MPs did not understand the term Health Technology Assessment, while a third were in the dark over the terms Quality Adjusted Life Year (QALY) and Patient Access Scheme (PAS).

On an even more basic level, when MPs were asked about eight health bodies, including the National Institute for Health and Clinical Excellence (NICE) the Scottish Medicines Consortium (SMC) and the All Wales Medicines Strategy Group (AWMSG), between 54% and 80% rated their understanding of almost all these organisations as ‘poor’, with the exception of NICE, for which 66% rated their understanding as ‘reasonable’.

“At a time when the new government is in the process of implementing reforms within the NHS, it is not acceptable that information about how and why decisions are made by health regulatory bodies has not reached our elected representatives,” said David Hall, chairman of the MDS UK Patient Support Group.

The findings also show that 76% of MPs believe the NICE appraisals process for approving new medicines for NHS use takes too long, and 80% agreed that patients with rarer cancers such as myelodysplastic syndromes (MDS) should have equal access to treatment, notes MDS UK, which has been campaigning for better access to Celgene’s Vidaza (azacitidine) following the drug’s rejection by the cost watchdog earlier this year.

MDS is a group of incurable blood disorders affecting the bone marrow that, in the worst cases, can leave patients with just six-12 months to live. Treatment options remain limited, so there was much excitement following the regulatory approval of Vidaza, which, in clinical trials, was shown to extend median survival in higher-risk patients from 15 months to over two years when compared to conventional care regimens.

But in March NICE ruled against the use of the drug on the NHS after calculating its incremental cost to be £63,000 per quality adjusted life year, and ruling that this is simply too expensive for NHS use. 

A successful appeal by patient and healthcare professional groups has, however, forced a NICE rethink on its position, and as part of an ongoing campaign for better access to the drug the MDS UK Patient Support Group and UK MDS Forum are lobbying MPs to contact NICE and the Department of Health in support of a swift and positive NICE re-appraisal of Vidaza.