Why ‘awareness’ is bad for your health

• ‘“You know who’s dead? Bert and Utty”, Mendy said. “Prostate cancer. Went to the spine. Spread. Ate ’em up. Both of them. Thank God I get the test. You get the test?” “What test?” the other fellow asked. “Shit, you don’t get the test?” “Skip”, said Mendy, pulling me away from Ira, “Meisner doesn’t get the test”.’
  
  (Philip Roth, American Pastoral, 1998, p56)

This exchange was recorded by Philip Roth’s fictional alter ego Nathan Zuckerman at the forty-fifth annual reunion of his New Jersey high-school class of 1950, an event at which tales of disease and death come high on the agenda for discussion. Mendy has just told Zuckerman (‘Skip’) that he gets his PSA (Prostate Specific Antigen) test every six months, while Zuckerman, who is impotent as a result of surgery for prostate cancer, tells Mendy that he still gets the test ‘every year’.

The week ending 30 March 2001 was Prostate Cancer Awareness Week in the UK, and UK health secretary Alan Milburn announced that British men are to be offered screening tests for the disease for the first time. Though the government has stopped short of introducing the full national screening programme demanded by some men’s health campaigners, the PSA test is to be made available on the NHS through GPs to any man who asks for it. Soon men in Britain will be able to compare PSA levels in the pub and share prostate awareness via the internet with their American brothers.

The men’s health movement has adopted a ribbon – purple (Why purple? Don’t even go there!) – and has even held its first demonstration. Last September the Coalition for Prostate Cancer marshalled ‘doctors and men with prostate cancer’ for a march on Downing Street to demand more government funding to fight the disease. The tone was set by Major Ronald Ferguson, who is distinguished not only for fathering Fergie, but also for having ‘battled’ against prostate cancer. ‘Something must be done urgently’ declared the major.

The UK Observer dutifully kicked off the week of awareness with the personal testimony of another celebrity sufferer – Bruce Kent (1). Once a prominent figure on the CND marches of the 1980s, Kent now seeks to challenge the ‘ignorance and misplaced shame’ about prostate cancer. His recent prostate removal appears to have pushed him back into the pulpit mode he knew in a still earlier life as a Catholic priest: ‘Some of the battles of the day become a little less important when one has heard a knocking on the door.’

It seems that men’s health campaigners have assimilated much of the style and the rhetoric of the old protest movements, together with their erstwhile leaders. But rather than trying to change the world, their object is to raise men’s awareness of their impending mortality and to encourage them to concentrate their energies on trying to preserve their crumbling bodies. Whereas once the radical project of ‘consciousness-raising’ sought to advance diverse forms of social liberation, ‘raising awareness’ of cancer seeks to reconcile individuals to the inevitability of suffering and death.

The campaign for greater public awareness of prostate cancer reflects a fatalistic mood in contemporary society. It is also likely to be damaging both to public health and to the health service. This is because it is based on two myths: that prostate cancer can be readily detected by screening tests and that, if detected early, it can be effectively treated by currently available methods.

The case against population screening for prostate cancer is scarcely controversial: it was made by the UK National Screening Committee to the government in March 1997 and accepted (2). The reasons for this were: ‘The PSA test had a limited accuracy and could lead to a positive result for those without the disease. Follow-up procedures with side-effects of impotency and incontinence could cause unnecessary harm to healthy individuals.

‘There was no medical consensus on how to treat the disease.’

The PSA test yields both false positive and false negative results. Depending on the cut-off level used, up to two thirds of men who have raised PSA levels do not have prostate cancer. On the other hand, some men who have prostate cancer do not have raised PSA levels. However, once somebody has had a test yielding a high result, this leads inexorably to more invasive investigations, such as a transrectal needle biopsy, which is every bit as uncomfortable as it sounds, and also carries risks of haemorrhage and infection. At present only 30 to 40 percent of men having a biopsy for raised PSA are found to be positive for cancer, a proportion that is likely to decline as more men demand PSA tests.

A positive diagnosis of prostate cancer leads to further problems. There is a wide variation in the rate at which this poorly understood tumour develops. In some men, it grows rapidly, spreads to the bones and causes death within a few years. More commonly, it grows slowly and never causes wider problems – most patients die of other causes. It is not at present possible to differentiate between these two extremes at an early stage, making it difficult to decide on the best form of treatment.

Various treatments are available – including surgery, radiotherapy, hormone therapy – but the evidence for the superiority of any particular treatment is poor. All carry significant risks, notably of impotence and incontinence. Radical surgery (‘prostatectomy’) is more popular in the USA, where PSA testing is more widespread and early diagnosis more common, but the balance of benefits and dangers remains unclear (the rate of death during surgery in the UK is estimated at 0.4 to 0.6 percent).

Why then has the government changed its line on screening for prostate cancer? No doubt political considerations play a part. Though the decision not to implement a national screening programme was taken by the previous Conservative government, William Hague has made a ‘prostate pledge’, proposing screening for all men aged between 50 and 70 (3). With an election pending, Tony Blair and Alan Milburn are keen to be seen to putting issues of health – and cancer has a particular appeal – high on the agenda.

However, Milburn has stopped short of introducing a nationwide programme. Instead he proposes an ‘Informed Choice’ scheme, under which GPs will provide men with an ‘information pack’ explaining the options. Once men have been made fully aware of how useless the PSA test is, of the risks of further intervention and the lack of evidence for the benefit of early treatment, then they can make up their own minds about whether to go ahead with the test.

This approach follows the model of post-BSE transparency and openness, in which the government abdicates responsibility for deciding on sensitive areas of policy and shifts the burden on to the public. The political calculation appears to be that an image of concern about cancer and sensitivity to pressure groups is more important than the practical consequences of the policy.

Yet the backdoor introduction of prostate cancer screening will have serious adverse consequences. The increasing scale of the promotion of prostate awareness over recent months, which has been eagerly taken up by the tabloid as well as the broadsheet press, has already produced an increase in requests for PSA tests in my surgery. Many of these have been from men in their twenties or thirties, whose risk of prostate cancer is negligible (95 percent of cases occur in men over 65). Some, who have gone to the trouble of taking time off work and booking an appointment, are not to be deterred from having the test. We have already begun to see the anxious faces of men with equivocally raised PSA levels, seeking referral for specialist assessment. Furthermore, this wave of demand comes at a time when local urological services are already under great strain, with long waiting lists and unsatisfactory delays. When clinics are swamped with the worried well, the really ill will suffer, a trend that is already apparent in many areas of the health service.

The inevitable result of greater public awareness of prostate cancer will be that large numbers of men will be subjected to investigations (and even treatment) that will be of no benefit to them, while causing considerable adverse effects. Furthermore, this enhanced awareness will not benefit men with prostate cancer: indeed it will divert resources both from their treatment and from the research necessary to discover more effective screening tests and treatments.

Dr Michael Fitzpatrick is the author of MMR and Autism, Routledge, 2004 (buy this book from Amazon (UK) or Amazon (USA)); and The Tyranny of Health: Doctors and the Regulation of Lifestyle, Routledge, 2000 (buy this book from Amazon UK or Amazon USA). He is also a contributor to Alternative Medicine: Should We Swallow It? Hodder Murray, 2002 (buy this book from Amazon (UK) or Amazon (USA)).

(1) Observer, 25 March 2001
(2) See the Department of Health website
(3) BBC News Online, 11 November 1999