Doctors keep quiet about cancer drugs to avoid upsetting patients if NICE refuses funding

Doctors are keeping cancer patients in the dark about new drugs that could extend their lives.

A quarter of specialists questioned for a poll published today say they hide the facts about treatments if they are awaiting official approval from the Government’s drug rationing body NICE.

Many of the doctors say they want to avoid distressing, upsetting or confusing patients in case NICE eventually decides not to fund the treatments.

The poll was conducted for Myeloma UK, which campaigns for sufferers of the bone marrow cancer, but provides an insight into a situation that stretches beyond the one disease.

Around 3,800 people are diagnosed with myeloma every year in the UK, and around 2,600 die.

NICE – the National Institution for Health and Clinical Excellence – is currently reviewing several treatments for the cancer, including the drug Revlimid, which trials suggest could extend the life of patients by

three years. Although doctors are allowed to prescribe drugs going through NICE’s lengthy assessment process, many are not keen to do so until a final decision is made.

Primary care trusts are usually reluctant to pay for new drugs that have not yet been given the NICE green light.

Revlimid, which costs around £4,000 a month, has been licensed for use in the UK since June 2007, but NICE is not expected to make a decision on whether it should receive NHS funding until

The drug is already widely available across Europe.

Eric Low, chief executive of Myeloma UK, said: ‘It is appalling that myeloma patients cannot get access to life-extending treatments, which are widely available throughout Europe.

‘Postcode prescribing is rife in the UK with some patients getting access to life-extending treatments ahead of a NICE decision whilst others are left to die.’

In a survey of 103 myeloma specialistsin England, Wales and Scotland, one in four confessed that they avoided telling patients about drugs awaiting approval by NICE.

Some 96 per cent of doctors who chose to keep quiet, did so because it might ‘distress, upset or confuse’ their patients.

Medical charities are increasingly concerned about ‘NICE blight’, where NICE’s decision to

review a drug means local primary care trusts stop funding its use.

Dr Atul Mehta, a haematologist consultant at the Royal Free Hospital, London, said: ‘These survey findings reveal the dismal state of UK cancer management.

‘Despite significant advances in the treatment of myeloma, such as Revlimid, the majority of patients cannot get access to

new life-extending drugs until they have been appraised and approved by NICE.

‘Patients with active myeloma 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.’

NICE came under fire this week from cancer specialists for its controversial decision not to fund drugs for kidney cancer.

A spokesman for NICE said: ‘NICE is currently appraising lenalidomide (Revlimid) for the treatment of multiple myeloma and final guidance is due to be published in early 2009.

‘Until this date the usual regulations apply – the provision of funding for treatments currently undergoing NICE appraisal is a matter for local PCTs and NICE has no role in those local decisions.’

A Department of Health spokesman said: ‘We have issued guidance to the NHS that makes it clear that funding for a treatment should not be withheld simply because NICE guidance does not exist.’