The price of health and the doctor's dilemma

The rationing of the drug Betaferon - random, arbitrary and byzantine - stands as a paradigm of the modern NHS
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The Independent Online
At last we have the first effective drug specifically for multiple sclerosis. Betaferon arrives as a blessing, you might think. But not for the National Health Service. The story of this drug stands as a paradigm of the increasingly byzantine ways of the NHS. This is an everyday tale of rationing - random, arbitrary and anything but rational.

First, to sinking hearts inside the Department of Health, the drug got its licence in December, certifying that it was effective for the 10,000 people who have the relapsing-remitting form of the disease. On average, these patients suffer perhaps two or three attacks a year which can be terrifying, agonising and incapacitating. An attack lasts an average of two weeks, after which the disease retreats again, though not completely.

Betaferon can reduce the number of attacks by one third. However, its makers stress that it is not a cure, nor does it delay the creeping onset of disability.

Julia Chapel is a typical patient. She fears she is losing her eyesight and finds she uses her wheelchair more often, as each attack leaves her worse than she was before. Her neurologist, from Sheffield, called her in to offer her Betaferon, though she had not asked for it. But when she arrived at the clinic to start the treatment, he apologised, saying he had been rather naive and there was no money after all.

Now she is campaigning vigorously in her local MS group. "Just in our group in Barnsley there are about 50 patients who would benefit. The health authority says it will spend pounds 50,000 on the drug next financial year, but that's only enough for five of us," she says. "Who is going to decide who gets it?"

It costs roughly pounds 10,000 a year per patient - pounds 100m to give it to all those who might benefit. MS patients' organisations were well prepared in advance for a battle to ensure they got it. As a result of their vociferous demands, as soon as it was licensed the NHS executive sent out guidelines to every health authority telling them to prescribe it, though only through hospital neurologists - a sensible proviso, since GPs would have little way of knowing which patients would benefit.

What has actually happened? The guidelines have been widely ignored by many health authorities. In Scotland, the Department of Health has announced that none of its 25 neurologists may prescribe it except in limited trials. All over the country the MS Society has reports that patients are being refused the drug, despite the express wish of their neurologists to prescribe it.

Take Nottingham as an example. It refused to allow its neurologists to prescribe it on cost grounds. Professor Lance Blumhardt was incensed. "I've got 80 to 100 patients lined up for whom it would stop some of the most severe attacks, but I haven't got the money," he says. "This hospital has a pounds 12m deficit."

The row that followed led the Nottingham Health Authority to a bold decision to hold a public meeting to try to explain to patients and their doctors why they could not have the drug. Dr Sarah Wilson, the local director of public health, who makes the key purchasing decisions, was one of the administrators who talked to them in the language of priorities. Betaferon for all suitable patients would cost Nottingham pounds 4.5m. "The pounds 10,000 cost for each MS patient would buy four hip operations, or 10 cataracts," she told them. "It would pay for most of a district nurse who would treat a great many people or it would pay for a lot of physiotherapy."

The MS patients were, of course, unmoved; as was their champion, Professor Blumhardt. Strong views were expressed and as a result the health authority went away and found some extra money.

However, it is far too little money for all Professor Blumhardt's patients. "It would be enough for about 10 patients, I think," he says gloomily. "But how am I to choose which ones should get it? In the United States they sometimes select patients by lottery. Why not?"

But the rationing problem is not even that simple. "They have given me some money to add to my budget, but it isn't ring-fenced. I wish they had ring-fenced it." He sighs heavily because that puts the rationing decision right back where he does not want it: in his hands.

His neurology service is the worst in Western Europe, with only six neurologists for a 2.2 million population. He talks wearily of a long list of desperate needs - of badly treated epilepsy, dangerous aneurisms, a new drug for motor neurone disease, stroke patients in great distress.

So, what will he decide? Probably he will decide to spend the money elsewhere. Selecting a handful of MS sufferers does not seem "worth the candle" when other needs are yet more pressing. Yet he feels deep sympathy for his MS patients.

Is this a new and sudden rationing shock? Not really. The NHS has always rationed, but under the old system these things were discussed behind closed doors. Now the Patients' Charter mentality has been unleashed. All the talk of purchasing and cost has made patients well aware that everything has a price-tag. But is this really the right way to decide who gets what?

The minister passes the buck to the NHS executive, which smartly hands it on down to the health authorities. If they are quick-footed, they do what they did to Professor Blumhardt and push it on down to him. He is the one who has to eyeball his patients in his clinic, so he can take the rap and carry the can. "Sorry, Mrs Smith, you just aren't in quite as much pain as Mr Brown next door." That sounds quite reasonable. After all, who better than he to judge between the needs of his own patients?

Except that as far as the individual patient is concerned, this random way of rationing means there is no longer a national health service at all. Instead, you have to choose where to live according to the illness you suffer: IVF, grommets, and the drug Epo for dialysis patients are all key treatments only available according to local whim. Maybe towns should have big signs up: Welcome to Liverpool, Land of the Lung Transplant! Or Kidderminister for Kidneys! Middlesbrough for Metabolics!

Doubts have been raised about how effective Betaferon is - not least by the Consumers' Association's Drug and Therapeutics Bulletin. At its best, it is so far only a palliative drug. But that is beside the point. MS patients have had their expectations raised, only to be told they cannot have it. Perhaps the drug should not have been licensed. Or the NHS should have been bold enough to announce that no one would get it.

Who should do the rationing? The politicians - it is their job to set the policy and take the flak. Instead, at the very word "rationing" health ministers turn tail and hide under their desks. People increasingly understand that the NHS is cash-limited and cash-strapped, but they cannot understand or accept gross and arbitrary geographical inequalities in the treatment they get.