Drugs can improve life expectancy
Doctors are keeping cancer patients in the dark about expensive new drugs that could extend their lives, a poll shows.
A quarter of specialists polled by Myeloma UK said they hid facts about treatments for bone marrow cancer that may be difficult to obtain on the NHS.
Doctors said they did not want to "distress, upset or confuse" patients if drugs had not yet been approved by the NHS drugs watchdog NICE.
Primary Care Trusts can provide drugs ahead of NICE approval but many do not.
The National Institute for Health and Clinical Excellence is currently reviewing several treatments for myeloma, including the drug Revlimid (lenalidomide) which trials suggest could extend the life of patients by three years.
One in four of the 103 myeloma specialists in England, Wales and Scotland questioned confessed that they had avoided telling patients about licensed drugs still awaiting approval by NICE.
Three-quarters said they had been in a situation where applications for their preferred treatment option were blocked by Primary Care Trusts mainly because of cost.
Eric Low, chief executive of Myeloma UK, said: "Post-code 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. Myeloma UK wants to engage with the Department of Health to find a solution to this growing issue."
Dr Atul Mehta, 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 - a process that can take up to three years from when the drug is first licensed in the UK.
"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."
There are nearly 3,800 new cases of multiple myeloma in the UK per year with more than 2,400 people dying from the disease annually.
Revlimid gained its UK license in June 2007 and NICE is expected to make its decision in 2009.
A spokeswoman for NICE said: "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: "The Department of Health has 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.
"PCT decisions in the absence of NICE guidance should be based on an assessment of the available evidence."
Liberal Democrat Shadow Health Secretary Norman Lamb said: "It is time the government stopped pretending nothing can be done to make the decisions over these drugs more transparent and rational.
"NICE must be made independent of ministers, and Primary Care Trusts should be made accountable to the people they serve."