The Times (KC) 26-Aug-08

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Cancer patients kept in dark about ‘too expensive’ drugs....

By: David Rose

Doctors are deciding against telling cancer patients about expensive new treatments to avoid causing distress when they find out that the NHS is unwilling to pay for them.

A quarter of specialists questioned in a survey admitted to hiding the facts about new drugs for bone marrow cancer that may be difficult to obtain on the NHS.

According to the poll, nearly all the doctors who chose not to mention such expensive drugs said that they did so because it might “distress, upset or confuse” their patients.

Three quarters said that cost issues were a consideration, 40 per cent cited “lack of evidence” and 29 per cent argued that there was “no point” discussing treatments that their patients were unlikely to receive.

It is believed that thousands of patients with various types of cancer could gain extra months or years of life from the latest, most effective drugs. In many cases they are being denied the treatments on the NHS because of a lack of approval by the National Institute for Health and Clinical Excellence (NICE), which assesses the cost-effectiveness of new medicines in England and Wales.

The poll, by the charity Myeloma UK, comes after patients with advanced kidney cancer were denied four treatments on the NHS under guidelines issued by NICE.

These and other new drugs for cancers of the lung, pancreas, colon and breast, and for multiple myeloma, are available widely throughout Western Europe, and in some cases in Scotland, but campaigners say that patients in England are being “left to die” if they cannot persuade their local trusts to fund treatment.

A total of 103 myeloma specialists in England, Wales and Scotland took part in the survey, with a quarter admitting that they avoided telling patients about licensed drugs that were still awaiting approval by NICE, which local health authorities were reluctant to pay for. Myeloma affects about 3,800 people each year in Britain and, of these, 2,600 are likely to die from it. NICE is reviewing treatments for the disease, including the drug Revlimid, which in clinical trials was found to be able to extend the life of some patients by up to three years.

The drug obtained its UK licence in June last year and is available across Europe, but NICE is not expected to make a final decision on whether it should receive NHS funding in England and Wales until early next year.

The drug, which costs £36,000 for one year of treatment, has been rejected as not cost-effective by the Scottish Medicines Consortium, NICE’s counterpart north of the Border.

NHS trusts have a legal obligation to provide treatments that are approved by NICE. In the absence of such approval, if a doctor thinks someone would benefit from a new medication, the patient can appeal to a committee at the local trust. Those who are refused must settle for less effective treatments or pay for the drugs.

In a statement, the Department of Health said that it had “issued guidance to the NHS which makes it clear that funding for a treatment should not be withheld simply because NICE guidance does not exist”.

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