I don’t need a war to fight my cancer. I need empowering as a patient

Using the martial metaphor for something as complex as cancer makes the disease ripe for political and financial exploitation

The Guardian
Tuesday 29 December 2009

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Obituaries routinely inform us that so-and-so has died “after a brave battle against cancer”. Of course, we will never read that so-and-so has died “after a pathetically feeble battle against cancer”. But one thing that I have come to appreciate since being diagnosed with multiple myeloma (a cancer of the blood) two years ago is how unreal both notions are. It’s just not like that.

The stress on cancer patients’ “bravery” and “courage” implies that if you can’t “conquer” your cancer, there’s something wrong with you, some weakness or flaw. If your cancer progresses rapidly, is it your fault? Does it reflect some failure of willpower?

In blaming the victim, the ideology attached to cancer mirrors the bootstrap individualism of the neoliberal order, in which the poor are poor because of their own weaknesses – and “failure” and “success” become the ultimate duality, dished out according to individual merit.

It also reinforces the demand on patients for uncomplaining stoicism, which in many cases is why they are in bad shape in the first place. Late diagnosis leads to tens of thousands of avoidable deaths in the UK each year. For those who have been diagnosed it remains a barrier to effective treatment. The free flow of information between patient and doctor is a scientific necessity, and a reluctance to complain inhibits it.

Earlier this year Barack Obama vowed to “launch a new effort to conquer a disease that has touched the life of nearly every American”. In so doing, he was intensifying and expanding a “war on cancer” first declared by Richard Nixon in 1971. But this “war” is as mislabelled and misconceived as the “war on terror” or the “war on drugs”.

For a start, why must every concerted effort be likened to warfare? Is this the only way we are able to describe human co-operation in pursuit of a common goal? And who are the enemies in this war? Cancer cells may be “malignant” but they are not malevolent. Like the wars on “drugs” and “terror”, the war on cancer misapplies the martial metaphor to dangerous effect. It simplifies a complex and daunting phenomenon – making it ripe for political and financial exploitation.

In the war on cancer, the search for the ultimate weapon, the magic bullet that will “cure” cancer, overshadows other tactics. Nixon promised “a cure for cancer” in 10 years; Obama promises one “in our times”. But there is unlikely to be a single cure for cancer. There are more than 200 recognised types, and their causes are myriad. As a strategic objective, the search for the ultimate weapon distorts research and investment, drawing resources away from prevention and treatment, areas where progress has been and can be made.

Like other wars, real and imagined, the “war on cancer” is a gift to opportunists of all stripes. Among the circling vultures are travel insurers who charge people with cancer 10 times the rate charged to others; the publishers of self-help books; and the promoters of miracle cures, vitamin supplements and various “alternative therapies” of no efficacy whatsoever.

But most of all, there’s the pharmaceutical industry, which manipulates research, prices and availability of drugs in pursuit of profit. And with considerable success. The industry enjoys a steady return on sales of some 17%, three times the median return for other industries. Prices do not reflect the actual costs of developing or making the drug but are pushed up to whatever the market can bear.

Exorbitant drug prices are at the root of recent controversies over the approval by the National Institute for Clinical Excellence (Nice) of “expensive” cancer drugs – notably Revlimid, a therapy used in the later stages of a number of cancers, including mine – and top-up or “co-payments” (allowing those who can afford it to buy medicines deemed too expensive by the NHS). “We are told we are being mean all the time, but what nobody mentions is why the drugs are so expensive,” said the Nice chairman, Professor Michael Rawlins. “Pharmaceutical companies have enjoyed double-digit growth year on year, and they are out to sustain that, not least because their senior management’s earnings are related to the share price.”

Many cancer therapies are blunt instruments. They attack not only cancer cells but everything else in sight. This is one reason people fear cancer: the treatment can be brutal. Making it less brutal would be a huge stride forwards for people with cancer. And that requires not a top-down military strategy, with its win or lose approach, but greater access to information, wider participation in decision-making (across hierarchies and disciplines) and empowerment of the patient.

Because I live in the catchment area for Barts hospital in central London, I find myself a winner in the NHS post code lottery. The treatment is cutting-edge and the staff are efficient, caring and respectful. What’s more, I live close enough so that I can undergo most of my treatment as an outpatient – a huge boon.

Cancer treatment involves extensive interaction with institutions (hospitals, clinics, social services, the NHS itself). Even in the best hospitals, the loss of freedom and dependence on anonymous forces can be oppressive. Many cancer patients find themselves involved in a long and taxing struggle for autonomy – a rarely acknowledged reality of the war on cancer, in which the generals call the shots from afar.

As Susan Sontag noted, in the course of the 20th century cancer came to play the role that tuberculosis played in the 19th century – as a totem of suffering and mortality, the dark shadow that can blight the sunniest day. But the ubiquitousness of cancer in our culture is of dubious value to those living with the disease. The media love cancer scares and cancer cures; they dwell on heroic survivors (Lance Armstrong) and celebrity martyrs (Jade Goody). But as Ben Goldacre has shown in his Bad Science column, they routinely misrepresent research findings, conjuring breakthroughs from nothing and leaving the public panicked, confused or complacent.

What we need is not a war on cancer but a recognition that cancer is a social and environmental issue, requiring profound social and environmental changes.