Belfast Telegraph (KC) 12-Aug-08

From Kidney Cancer Resource

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NHS should not save lives if it costs too much: watchdog

Patients cannot rely on the NHS to save their lives if the cost of doing so is too great, the Government's medicines watchdog has ruled for the first time.

The National Institute for Clinical Excellence (Nice) has said the natural impulse to go to the aid of individuals in trouble – as when vast resources are used to save a sailor lost at sea – should not apply to the NHS.

The disclosure follows last week's controversial decision by Nice to reject four new drugs for kidney cancer even though they have been shown to extend life by five to six months.

Nice has been under pressure from the drug industry to apply the so-called "rule of rescue" to such cases, setting aside costs in instances where treatment is necessary to save life. But the institute has decided that if drugs are too expensive they should not be prescribed even if they prolong life, because the money could be better spent elsewhere. The judgement overrules advice from Nice's own citizen's council, which recommended two years ago that it should adopt a "rule of rescue" as an essential mark of a humane society.

Nice describes the rule of rescue as "the powerful human impulse to help an identifiable person whose life is in danger, no matter how much it costs". But it says in a report that spending too much on one patient may deny others. "When there are limited resources, applying the 'rule of rescue' may mean other people will not have the care or treatment they need," it says.

This contradicts the position of Nice's citizen's council, which concluded that individuals in "desperate and exceptional circumstances" should sometimes receive greater help than can be justified by a "purely utilitarian approach." The council, 27 members of the public chosen to be representative of lay opinion, backed the idea by 21 to 6. Most agreed the NHS could not be expected to save life at any cost, but felt there were cases where, if the NHS did not intervene, society would be diminished. "It is human nature to help in an emergency," said one member.

Another said helping those in imminent danger had a wider impact, as when the response to the Asian tsunami created a feelingwhere: "We felt better about ourselves as a society".

Professor Peter Littlejohn, clinical and public health director at Nice, said: "We shouldn't have a formal rule of rescue because our general guidance took into account provision for exceptional cases. That can allow [the institute] to recommend treatment above our normal cost threshold."

The move was criticised by the British Medical Association, which said doctors had a duty to do their best for patients. Tony Calland, chairman of the ethics committee, said: "We would be opposed to ignoring a rule of rescue when it introduces a degree of flexibility around extreme cases. So what if you waste a few pounds if you are doing your best for humanity?"

The Nice report, Social Value Judgements, was placed on its website last month but was not publicised. The report also includes advice on the treatment of smokers, drinkers and the obese. It rejects arguments that people whose illnesses are self-inflicted should get less or no treatment. But it says treatment may be withheld where behaviour cuts the chances of success, unless patients agree to change. The alcoholic who will not quit drinking could be denied a liver transplant.

Treatment may also be refused to elderly patients if the benefits are deemed too low or the risks too high.

'Billions go into research then we deny people the benefits'

Kate Spall successfully campaigned for her mother, Pamela Northcott, 58, to get the drug she needed for her kidney cancer. Though she won her battle with her local health trust in north Wales, her mother died soon after starting treatment.

The drug, Nexavar, costs £32,000 per patient per year – more than the average salary of around £24,000. Nice declined to recommend its use on the NHS in draft guidance published last week because it was not cost effective. Ms Spall said: "We plough billions into cancer research but the benefits of that research – some remarkable drug treatments – are not available to all who need them. Patients are disregarded and given up on because they cannot get the drugs they need."

Ms Spall now campaigns on behalf of other patients and has scores of appeal applications, many of them for patients with kidney cancer.

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