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Never mind that. What is alarming about this case was health officials’ decision to give Ms Clark the drug owing to exceptional circumstances: she has a terminally ill 11-year-old foster son. The day the NHS officially decides to treat people according to their personal “worth”, or society’s need for them, rather than their medical need, will be the day the health service dies.
I say “officially” because in practice, of course, hospital consultants faced with long waiting lists make such judgments all the time. A child will be operated on before an 80-year-old and a smoker will be told to quit before being given a heart bypass. But those decisions are based on a calculation of future quality (and quantity) of life. In the end they are, as far as is possible, medical computations, not moral judgments about who “deserves” treatment. Is a childless person to be worth less than a mother? Which of them is more likely to be paying for the NHS? You cannot pick and choose without losing the consensus that supports the health service in the first place.
So let all have Herceptin if it would help them, even at a cost of £200 million a year. The only reason local health trusts are not able to offer the drug routinely (apart from its cost) is that it is caught up in the Government’s lengthy regulatory procedures. The manufacturer, Roche, says it has not yet collected the safety data needed to apply for a licence for its use to treat early breast cancer. Once a licence is granted, the drug has still to go through the National Institute for Health and Clinical Excellence system, which will decide whether it is sufficiently effective and cost effective to be made available nationally. In other words, okaying it will take years. Yet the data available is so persuasive that good private health insurers already pay for it.
The way we, as patients, allow the Government to dictate which medicines should and should not be available to us is overdue a rethink. The current system of regulating all medicines as prescription only, available over the counter from a pharmacist, or general sales dates back to the 1960s, when far less information was available to patients about the benefits and potential side-effects of treatments.
But patients today have acccess, via the internet, to a barrage of information inconceivable in 1968. Anyone who has a serious condition diagnosed can quickly become a patient-expert, and many do. I have one friend who discovered the expert’s expert in her disease, a doctor in the US, and rang his office. She was astonished when he actually came to the phone to speak to her, and was extremely helpful, even genuinely interested in her symptoms.
To continue to suggest that patients should be passive recipients of whatever is doled out to them by the NHS, or would become pill-popping morons without the toughest state control, is offensive. Nobody wants to take a breast cancer drug that doesn’t have a good chance of doing them some good. Few would risk the unwanted side-effects of most medicines without good evidence that it might help them. Publish all the data (and I mean all of it) and let people decide. Then let them go to a doctor if they wish to seek further advice on their decision.
The licensing system anyway ignores the fact that the full side-effects of a drug are not known until hundreds of thousands of people have taken it; look at what happened with Vioxx, a painkiller given to arthritis sufferers and withdrawn last year after it was linked to an increased risk of heart attacks and stroke. Why not set up a website for patients to record their experiences with different drugs?
I remember, years ago, being advised to take Larium, a malaria prophylactic, by a doctor. Doesn’t Larium have nasty side-effects, I asked him. Oh, it makes one in a few thousand go mad, he replied airily. One of those affected happened to be my friend, who suffered some kind of nervous system collapse and all but lost the ability to speak; and of the others I knew who had been prescribed it, all experienced frightening side-effects. I don’t care what it says on the packet. No thanks.
A Commons Health Select Committee report this year found the relationship between pharmaceutical companies and the medical profession to be too close for comfort (www.publications.parliament.uk/pa/cm200405/cmselect/cmhealth/42/42.pdf). The Department of Health spends £4.5 million a year providing independent medicines information to prescribers; the drugs industry spends £1.65 billion, often cushioned with free trips abroad or other goodies for your doctor. Are you sure that he knows best?
Liberalising the market in medicines raises questions about cost as well as safety. But this is a debate the country is going to have to have. The cost of medicines to the NHS has risen by 46 per cent since 2000 to £8 billion a year, or 11 per cent of its budget. Keeping drugs as prescription only can work in the interests of the pharmaceutical companies, allowing manufacturers to set prices that the NHS can bear, rather than what individuals will pay. If a drug was too expensive for you or I to buy over the counter, then we would ask for something else. When the antihistamine Claritin was changed to an over-the-counter drug in the US three years ago, the price for a year’s supply fell from $1,066 to $365.
The Government has accepted the case for reclassifying more drugs “down” from prescription to over the counter, but has set an entirely arbitrary figure, up from five to ten annually. Why ten? Why not eleven? Or 111? Deregulate more of the most common drugs and give people the option of buying them rather than queueing at the doctor’s for a prescription. Giving patients more control could turn out to be healthier all round.
Alice Miles has been with The Times since 1999. She began as a Parliamentary Sketch writer before becoming a columnist, writing mainly on politics and national issues such as education and health. She won Columnist of the Year in 2007.
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