The politics of cancer

Obituaries routinely inform us that so-and-so has died ‘after a brave battle against cancer’. I’m waiting for the day I get to read one that says so-and-so has died ‘after a pathetically feeble battle against cancer ...’

One thing I’ve come to appreciate since I was 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 ‘failure’ and ‘success’ become the ultimate duality, dished out according to individual merit, and the poor are poor because of their own weaknesses.

It also reinforces the demand on patients for uncomplaining stoicism, which in many cases is why they’re in bad shape in the first place. Late diagnosis leads to tens of thousands of avoidable deaths in the UK each year. It also accounts for much of the discrepancy between UK cancer survival rates and those in France. And for those who are diagnosed and undergoing treatment, a reluctance to complain inhibits the vital flow of information between patient and doctor and thereby obstructs recovery.

Fitful progress
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. For all the billions subsequently spent by the US, British and other governments, progress in that ‘war’ has been fitful.

The age-adjusted mortality rate for cancer is about the same in the 21st century as it was 50 years ago, whereas the death rates for cardiac, cerebro-vascular and infectious diseases have declined by about two-thirds. Since 1977, the overall incidence of cancer in Britain (discounting increases caused by an ageing population) has shot up by 25 per cent.

The ‘war on cancer’ is as 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 cooperation in pursuit of a common goal? And who are the enemies in this war? Cancer cells may be ‘malignant’ but they are not malevolent. Their ‘abnormality’ is as much a product of nature as the ‘normality’ of other cells. 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 ten 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 of cancer 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 and can be made.

Thanks to collusion between industries and scientists, it took decades for the truth about tobacco and asbestos to come out. For the same reason it will probably take many more years for us to learn the truth about other cancer-causing agents in our environment. In 2007, 6 per cent of cancer deaths in the UK (10,000) were caused by occupational exposure to carcinogens. In cases such as these, what’s needed is a revolution in our tawdry health and safety regime, not new drugs.

As for ‘lifestyle’ factors, they are part of the wider environmental and social background of cancer, not a separate category applying to individuals with inadequate willpower. The context of any ‘lifestyle’ choice is a mix of opportunity and deterrence, economics and culture, personal circumstances and social conditions. A real general attack on the causes of cancer would require industrial, consumer and environmental reforms on a vast scale, not scapegoating those perceived as shirkers and deserters in a holy war.

Thankfully, as the incidence of cancer has risen, so has our ability to treat it. Survival rates have doubled in the past 30 years, with almost half of those diagnosed with cancer living for five years or more. This is less about drug breakthroughs than early diagnosis, improvements in care, and refinements in existing treatments. Today, what’s preventing cancer patients from living longer and more happily is mainly a failure to apply existing best practices universally.

The biggest single boon for people living with cancer would be the elimination of inequalities in health care. In England and Wales, over the period 1986-1999, the ‘deprivation gap’ in survival between rich and poor became more marked for 12 out of 16 male cancers and nine out of 17 female cancers examined.

Opportunists and vultures
Like other wars, real and imagined, the war on cancer is a gift to opportunists of all stripes. Among the vultures are travel insurers who charge people with cancer ten 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 is the UK’s third most profitable sector, after finance and tourism, with a steady return on sales of some 17 per cent, three times the median return for other industries. Its determination to maintain that profitability has seen drug prices rise consistently above the rate of inflation. The cost of cancer drugs, in particular, has soared.

The industry claims high prices reflect long-term investments in research and development (R&D). But drug companies spend on average more than twice as much on marketing and lobbying as on R&D. Prices do not reflect the actual costs of developing or making the drug but are pushed up to whatever the market can bear. Since that market is comprised of many desperate and suffering individuals, it can be made to bear a great deal.

The research that this supposedly funds is itself warped by the industry. When it comes to clinical trials of their products, they engage in selective publication and suppression of negative findings and are reluctant in the extreme to undertake comparative studies with other products.

Exorbitant drug prices are at the root of recent cancer controversies over the National Institute of Health and Clinical Excellence (NICE)’s approval of ‘expensive’ cancer drugs (notably Revlamid, a therapy that can extend life 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,’ says NICE chairman 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.’

An end to win or lose
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 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 postcode lottery. The treatment is cutting-edge and the staff are efficient, caring and respectful. What’s more, I live close enough 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 the 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; it is 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 essential ‘Bad Science’ column in the Guardian, the media grossly misrepresent research findings, conjuring breakthroughs from nothing and leaving the pubic panicked, confused or complacent.

For those living with cancer, now and in the future (and that’s one in three of the UK population), the biggest threat is the coming public spending squeeze. Cuts in NHS budgets and privatisation of services will mean more people dying earlier from cancer and more people suffering unnecessarily from it. Even better survival rates will become a curse, as responsibility for long-term care is thrown back on families. A real effort to reduce suffering from cancer requires a political struggle against a system that sanctifies profit – not a ‘war’ guided by those who exploit the disease.

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