Life or death? We must all decide

If every treatment is a question of cost, the NHS will become a US-style safety net for the very poor
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The Independent Online
Cloaked in its usual secrecy, last week the Medicines Control Agency made an important decision, yet to be announced. They agreed to license a new drug called Aricept, the first to make any improvement in the mental state of Alzheimer's patients. Now stand back and await the stampede.

What are health authorities to do? There are some 650,000 patients with dementia. (Two-thirds of them have Alzheimer's, but identifying which ones have it is difficult.) The drug will cost pounds 100 a month per patient. In April, when it will probably become available, around half a million patients - or their carers - will head straight for their GPs to ask for the only treatment for this disease that has been proven to do any good at all.

Already the word is spreading fast. When I first called the Alzheimer's Society an over-enthusiastic worker told me that the new drug could make a 30 per cent improvement in the brain function of many sufferers. Later, their executive director was more circumspect. Certainly there are improvements for some, he agreed, but better cognitive ability in remembering numbers in laboratory tests does not necessarily translate into people being able to find their way to the lavatory.

However, he had heard of previously helpless patients taking part in the drug trials who had suddenly been able to write a shopping list, then go down to the shop and ask for everything on it. It will only take a few stories like that to make desperate carers frantic to get their hands on the drug.

So if half a million people demand the drug, it will cost some pounds 600,000. How is the NHS to decide who gets it, and at what opportunity cost to other patients?

Ask any politician and they run a mile. Rationing? What rationing? I see no rationing. "Priority setting", perhaps, but the word "rationing" does not cross their lips. The official line is that each health authority must decide how to spend their allocated funds according to local needs - as if these diseases were local. Never has the cause of devolution been so passionately espoused as by our Pontius Pilate health ministers over the past few years.

Aricept helps the memory of those in the early and middle stages of Alzheimer's, but not the painful process of disintegration of the personality. The drug may not make much difference to the amount of care they need, so it may not save care costs. Indeed, it could prolong the life of some and, if it were mistakenly prescribed to the already seriously affected, it could prolong their misery. But assuming only the right people get it, that is still some 200,000 - a hefty extra bill for health authorities.

Already, new and expensive drugs are being denied to many patients: Beta Interferon for multiple sclerosis sufferers, Epo for kidney patients, Rilutek for motor neurone disease. Worst of all is the failure to prescribe Clozapine for many schizophrenics, which would transform the lives of one-third of them and make another third significantly better. (Clozapine costs pounds 5 a day, while the far less effective Largactil costs only 8p a day, and has bad side effects that mean patients often resist taking it.)

The mentally ill and those with rare conditions tend to be low priorities - and patients are still surprisingly patient. But Alzheimer's will be another story. There is barely a family in the land that does not fear it. There will be no holding back this tide of demand.

So what should health authorities do? Lambeth, Southwark and Lewisham Health Authority are trying to confront the problem rationally. They are about to handle a request for funding one patient who will cost them pounds 750,000 a year. Who is to take such life-and-death decisions? They have decided in these cases to call a meeting of the 13 members of the authority, and to let them make their decision in public.

They first did this recently when lack of funding stopped all waiting list surgery - but no members of the public turned up. They will do it again with this current case, keen to involve the public in making choices and gradually to educate people into thinking about rationing. Each difficult case that gets publicised, such as that of Jaymee Bowen, the child who was initially refused a new cancer treatment partly because of cost, teaches people a little more of the language of priorities. But when we, the public, have thought about it, what then? Can we stomach joining in the decision to let someone - or thousands - die for lack of money?

Consider another dilemma facing this same London health authority: their waiting list for angioplasty, a heart operation, is now so long that some will die because they cannot be treated in time. Should the authority warn those on the list, so that they have the chance to save their lives by buying private treatment - admitting that the rich will live and the poor will die? They are still chewing over the precise wording of this difficult letter.

If many state-of-the-art treatments are denied on the basis of cost, this will rapidly destroy the NHS as a universal service: all who can will buy the drug or the operation privately and the NHS will become an American-style safety net offering old-fashioned, cheap treatment to the poor. It may not take very much of a squeeze to push us from one system to the other. It does not need any right-wing conspiracy to kill off the NHS - underfunding will do it just as well.

Despite a lot of crying wolf (not from me) the NHS has been just sufficiently funded over the past 17 years of Conservative government. But this year the health service budget has taken a plunge. While it has averaged 2.6 per cent real growth since 1979, it will get a meagre 0.9 per cent this year, 0.8 per cent next year and -0.2 per cent the year after, while its costs soar.

Gordon Brown, Labour's would-be Chancellor, has signed up to keep within that impossible budget. So might Labour find itself presiding over a mass move into the private sector? All the evidence is that our tax-based system is far cheaper for everyone - especially for the better off. Will public airing of NHS funding dilemmas persuade people that they need to pay more tax to keep the health service at the cutting edge of medicine? It may be angry Alzheimer's families that force the issue.

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