Whose quality of life?

Observations on drugs for Alzheimer's

The basis on which the National Institute for Clinical Excellence (Nice) has decided that no new Alzheimer's patients should start on any of the available drugs, Aricept, Exelon or Reminyl, may look clear cut. A study in the Lancet shows the drugs do not prevent admissions to care, reduce death rates or slow the progression of the disease, though they do lead to minor improvements in mental tests. The trial met the gold standard of research: it was placebo-controlled, randomised, double-blind. It contradicts claims made by the pharmaceutical companies, which - in short trials with selected patients - assess the drugs they themselves develop; their conclusion that the drugs slow the rate of mental decline in up to half of mildly to moderately affected patients is not confirmed.

Nice calls itself an "independent organisation" and provides national guidance on treatments and care. Can we trust its judgement? Doctors and patient groups such as the Alzheimer's Society don't think so. Alzheimer's is a progressive condition, eroding the personality, dignity and capacities of old people and involving a huge burden in personal care; any little improvement can have an immeasurable value.

Some of this may be a placebo effect, but even that is something, mitigating doctors', carers' and patients' feelings of helplessness. Indeed, the carers - often female and themselves advanced in years - are frequently the biggest victims of Alzheimer's, and Nice's proposal is most flawed in its consideration of them.

The appraisal of these drugs was re-quested by government departments, and we do not need to be overly cynical to think this is all about cost. Aricept costs at least £2.50 per day per person. If Nice's proposals were accepted, the NHS would be saving £60m in three years' time.

Nice uses a measure of cost-effectiveness called the "quality-adjusted life-year gained" assessment (the QALY), which tries to quantify improved quality and length of life. It takes no account of quality of life for carers; it assumes that the old benefit less from treatment than the young; and it fails to see that while quality of life may seem low to a young person in, say, a wheelchair, it may seem much higher to an old person in a similar condition.

Even if the basis of the QALYs were valid, most health staff find reducing compassion to such terms chilling. The emphasis Nice puts on cost-effectiveness shows it is no more independent than the commercial sector in its decision-making. The one wants to make money, the other to save it. The public needs a truly independent body to assess efficacy and safety of medicines, one detached from either profit or savings motivation.

If the government then wished to cut costs by rationing drugs, at least it would be doing so openly.

This article first appeared in the 14 March 2005 issue of the New Statesman, To save Africa we must listen to it