British cancer patients kept in dark about `too expensive' drugs

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 $72,000 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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Treatment blocked despite years of pain: Case study

Colin Ross, 55, of Horsham, West Sussex, found that he had multiple myeloma, a cancer of the blood cells, in May 2004, and has been told that unless he is given the drug Revlimid he will not survive beyond the autumn. Mr Ross, a former engineer in the oil and gas industry, has suffered years of pain and disability because of the disease, which has been slowly eating away at his vertebrae and other bones, making them brittle.

Despite the exhortations of doctors treating him at the Royal Marsden Hospital in London, Britain's leading cancer hospital, Mr Ross's local NHS primary care trust in West Sussex has refused repeatedly to fund the treatment, even though patients in East Sussex and elsewhere have access to the drug on the NHS. "I've broken bones several times, feeling very weak and tired all the time. It's got to the point where my bone structure can't support my own weight, it takes ten minutes just to get out of bed and I can't stand unsupported in front of the mirror to clean my teeth," he told The Times yesterday. "I was told from the start that it was incurable, that treatment could only hold it at bay, but it now seems that Revlimid is my last resort."

Although the drug is readily available to patients across Europe and in the United States, it has not yet been granted approval for use throughout the NHS in England and so is being provided only by some NHS trusts in "exceptional circumstances".

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Australia: Storm over 'ghost' public hospital wards

VICTORIAN Health Minister Daniel Andrews is at the centre of a growing political storm over claims that hospitals have been falsifying patient records to win government funding. The State Opposition, the Australian Medical Association and an independent health policy institute have expressed dismay at Mr Andrews' refusal to investigate the claims, which are believed to involve some of the state's leading public hospitals. "This is an unconscionable state of affairs and must be investigated," Australian Health Policy Institute director Stephen Leeder said.

Federal Health Minister Nicola Roxon last night intervened in the row, warning that evidence of "fudged" patient data would be of serious concern to the Government as it negotiates new funding agreements with the states and territories. Mr Andrews last night was refusing to launch an investigation, repeating that he did not believe the allegations.

The row erupted after The Age revealed that Victorian hospitals had been accused of manipulating patient data, creating "phantom wards" and inconsistently measuring waiting times to meet State Government benchmarks for bonus payments. A survey of 19 emergency department directors by the Australasian College for Emergency Medicine found almost 40% of hospitals had been "admitting" patients when they were, in fact, still languishing in emergency department waiting rooms, corridors or on trolleys. The "virtual wards" were used purely for "creative accounting", the doctors said.

Similar allegations about NSW hospitals falsifying patient data to rort funding were investigated by the NSW Health Department last year and have been referred to the state's Independent Commission Against Corruption.

Australian Medical Association president Rosanna Capolingua said allegations of hospitals acting fraudulently should be investigated to ensure new health care agreements were not rorted in the same way. Dr Capolingua said benchmarks should not encourage rorting that would undermine efforts to improve the health system. ''We need to make sure there is transparency, honesty and no perverse incentives in the benchmarks," she said.

Professor Leeder of the Health Policy Institute said the Victorian emergency doctors' claims could be more widespread than thought and must be investigated by the State Government. "If you do not have a person going around checking on what people are doing when they are recording and coding information, all evidence suggests there will be errors, random, systematic and perverse," he said.

Opposition health spokeswoman Helen Shardey said the allegations must be investigated to ensure Victoria's health system was measured properly and did not jeopardise its position under the new health care agreements. "It's extraordinary that a health minister would not want to investigate this immediately," she said. "It displays ignorance and it says he does not trust the people running our hospitals."

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