Deborah Orr: Hope doesn't always make economic sense

The public fondly imagines there should be no ceiling on what the NHS invests to save its bacon

It describes itself as "the independent organisation responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health", with its admirable and difficult role set out clearly in the 2004 White Paper, Choosing Health.

But in the three years since it started operating in its present form, The National Institute for Health and Clinical Excellence (Nice) has come to be described, rather more tendentiously, as "the Government's controversial rationing body". It has gained an unfair reputation as a quango that concerns itself mainly with thinking up ways of stopping sick and dying taxpayers from getting the drugs they need.

There has been outrage over the decision to limit osteoporosis drugs for women until they are 75, or have broken a bone, even though treating the illness costs the NHS £1.7bn a year. There has been fury over the decision to reject the use of the bowel cancer drug Avastin - also called bevacizumab - even though Nice's assessment of this drug states "the likelihood of bevacizumab being cost effective is zero".

The latest furore concerns the treatment of Alzheimer's. Nice has ruled that three Alzheimer's drugs, donepezil, rivastigmine and galantamine, are ineffective when prescribed to people in the early stages of the degenerative illness, and should not be given until the illness enters its "moderate" stage.

Nice's decision does not differ substantially from that expressed in the British Medical Journal, that "the drugs offer little real benefit". Nevertheless, two of the drug companies involved, Pfizer and Eisai, are considering seeking a judicial review of a decision they describe as "perverse".

Nice's view is also hotly contested by a slew of practitioners and patients, who say they see or feel the benefits of the drugs every day. What comes up again and again is the idea that these drugs provide "hope" for patients in the early stages of an extremely frightening disease. What Nice appears to have had to decide in the end was whether hope on prescription makes economic sense. Sadly, it doesn't.

Not that this cuts any ice with the public, which fondly imagines that there need be no ceiling at all on what the NHS is willing to invest to save its collective bacon.

A poll from the Institute of Public Policy Research found that one-third of people believed that all drugs and treatments should be available (madness!), with another 40 per cent stating that budgets should not be a consideration when treatment is effective (touchingly idealistic). Only 28 per cent said "value for money" should be a factor, which leaves Nice as a crucially important public organisation that has very little understanding or support from the taxpayers it works in service of.

Not that Nice is all about money anyway. The remit of the organisation does oblige it to "take account of economic evidence... how well the medicine or treatment works in relation to how much it costs the NHS". But this is only part of a complex process that assesses and peer reviews a vast range of evidence available about any new drug or procedure. It's sensible, with so many different drugs available, offering only slightly different outcomes at highly variable costs, for an independent body to make such assessments.

The controversy over the breast cancer drug Herceptin gave an illustration of how well Nice can work. Prior to a judgement from Nice, and after licensing, it's still up to Primary Care Trusts to make decisions about new treatments themselves. It was this lack of uniformity that led to the problems with the "postcode lottery", whereby some people got certain treatments, and others didn't, according to where they lived. This was the situation with Herceptin, which people were being denied by some trusts because it cost up to about £27,000 a year per person.

Although at first glance Herceptin seems very expensive - , it's not considered by Nice to be so at all. This is because costs are assessed on cost per "quality-adjusted life year" which takes price, months or years of added survival, side-effects and improvement of quality of life into account as well. On this measure, because it is so effective, Herceptin has a "Qaly" of less than £5,000 even though it actually costs £30,000 which is near the Nice ceiling for prescriptions. Now that Nice has ruled in favour of the drug, PCTs are obliged to use it, and the postcode lottery effect has diminished.

According to Professor Mike Richards, the national cancer director, there has been a substantial improvement in the way cancer drugs more generally are prescribed over a short period. Making comparisons between the second half of 2003 and the first half of 2005, he found that "For every single cancer drug, we are seeing a reduction in the variation".

The postcode lottery was one of the problems Nice was set up to tackle, along with other NHS difficulties such as the traditionally slow uptake of new drugs that the monolithic organisation is subject to. Further, Nice has had some success in tackling the habits of some older GPs, who tend to continue prescribing drugs or treatments out of habit, even when they have become obsolete, outdated or simply far more expensive than other comparable options.

There are difficulties, of course. Such is the rate at which new drugs are developed, Nice can seem to be unresponsive to patient needs. There was great excitement last week, for example, over the development of a new drug, Lucentis, which can reverse blindness caused by age-related macular degeneration. There is some discomfort about the fact that Nice will not have completed its assessment of the drug until next August. Again, it's all more complex than it looks, as another drug, Macugen, which has a licence already, needs to be assessed as well.

At present, the NHS prescribes Visudyne, which merely helps to slow the disease. Those who want Macugen will, until Nice gets its research done, have to throw themselves on the mercy of their individual PCTs.

Ironically, Avastin, the bowel cancer drug that did not get approval from Nice in treating cancer, is said to be just as effective as Lucentis at treating AMD, although its said to be 150 times cheaper. This treatment is only available privately though, because the research and development that has gone into the drug has investigated it as a treatment for cancer. Doctors prescribing the drug privately must simply warn patientsthat they use it at their own risk.

This option just isn't possible for the NHS. Anyway, there's no way that Nice could justify the cost of undertaking such extensive clinical trials, even though, in the end, the Avastin-for-eyes Qaly might have turned out looking fabulous.

d.orr@independent.co.uk