So I’m probably not going to make any friends with this, but I hope I won’t lose any. Because I really do think there’s an important issue at stake.
Here’s a spreadsheet I put together which lists the 10 cancers which killed most people in the UK in 2008, along with the number of new cases diagnosed in 2007. It also includes the number of results that Google returns both for a particular type of cancer and for “awareness” of a particular type of cancer. This is a rough measure of the availability of information resources by cancer type – obviously it’s no more than a crude proxy to the real world, and it wouldn’t pass any kind of peer review process whatsoever. But it serves to illustrate a point that’s otherwise too emotive to broach.
For those who don’t like numbers, the results are given in pictorial form on “Search results” and “Awareness” tabs at the bottom. I’ve also uploaded the latter as an image:
What does this show? It shows that there are 742 “awareness-raising” web pages for every person (yes, men get it too) unfortunate enough to be diagnosed with breast cancer each year and more than 2,800 for every one of the even more unfortunate people who dies. By contrast, there are just (just!) 10 pages for every person who gets oesophageal cancer – even though it kills two-thirds as many people. So there is a massive over-supply of information on breast cancer.
Does this really matter? Isn’t greater awareness all to the good, even if it’s massively skewed to one cancer type? Perhaps the skew is justified. Lung cancer, the biggest killer, is largely a self-inflicted disease. Everyone knows smoking causes it. Maybe we don’t need more awareness there. Prostate cancer is becoming a cause célèbre in its own right, albeit one that’s still dwarfed by the breast cancer juggernaut.
But there are others – the “Cinderella” cancers – which just don’t arouse the same level of response despite being claiming huge numbers of victims. And that matters because it’s reflected in the funding of cancer research. (Yeah, correlation is not causation. But it’s not too difficult to think of mechanisms that connect a disease’s public profile to research priorities.)
Here’s another graph, this one from the Pancreatic Cancer Research Fund (http://www.pcrf.org.uk/cancerfacts.html) but the numbers are from Cancer Research UK:
Ovarian cancer’s not in this graph, but it’s an example that I know well. It’s not as badly represented as some other cancers in my back-of-an-envelope “awareness” analysis, but nonetheless funding is scarce because it’s seen as a disease of old women – whose lives are seen to be less worth saving than those of younger breast cancer victims: about half of the women who die young from cancer (“young”=before 50) die of breast cancer. But ovarian cancer still killed my first wife when she was just 35 (http://kathrynoates.org/). To say nothing of my unborn child. Perhaps you begin to understand why I care about this.
But never mind the heat-string-tugging anecdotes. Here’s a more clinical analysis based around “average years of life lost” (AYLL):
Comparing AYLL to research spending suggests four ‘Cinderella’ cancer sites with high individual cancer burden but low research spending: CNS [central nervous system] tumours, cervix and kidney cancers, and melanoma. Breast cancer and leukaemia have roughly average AYLL but a considerable excess of research spending. YLL emphasises the discrepancy between research spending and mortality, and may be helpful for decisions concerning research support. Avearage years of life lost measures the burden to individual patients and may be helpful where individuals’ needs are relevant, such as palliative care. As well as crude mortality, more subtle and comprehensive calculations of mortality statistics would be useful in debates on research funding and public health issues.
That’s from another paper funded by Cancer Research (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2361853/), this one published in 2005.
So: Breast cancer research is disproportionately well-funded, whether you consider mortality or years of life lost. There are comprehensive scanning programs in place for those at risk – possibly even excessively comprehensive, which brings its own problems in terms of false positive diagnoses and the “worried well”. And by my measure above, there is a colossal oversupply of information. If the message isn’t getting through, it’s not for want of awareness-raising campaigns.
And what is the message anyway? Let’s take the current Facebook campaign: what is it really supposed to achieve? Why is it designed – ingeniously if weirdly (http://fullcomment.nationalpost.com/2010/10/06/robyn-urback-facebooks-i-like-it-campaign-pointlessly-sexualizing-tragedy/) – to raise male awareness of breast cancer? What does “awareness” mean? What meaningful action are men supposed to take as a result, other than to feel a bit sad and maybe donate yet more money to breast cancer research funds? Why are men deliberately excluded from campaigns like this one, or the Race for Life, or innumerable other initiatives, anyway? Granted, the vast majority of people who actually get breast cancer are women, but does that mean men aren’t affected by its consequences too? Don’t we have partners, daughters, sisters and female friends too?
Is this really about meaningful action on breast cancer, or about feel-good female solidarity? Does such solidarity actually achieve anything? Does it alienate those whose personal sentiments or experiences don’t fit the almost cultlike narrative that has grown up around breast cancer? Barbara Ehrenreich wrote “Welcome to Cancerland” in 2001, but I think it’s still entirely relevant today (http://www.barbaraehrenreich.com/cancerland.htm). Does it serve the interest of commercial concerns that have little to do with genuine compassion or meaningful action (http://thinkbeforeyoupink.org/)?
Wouldn’t the campaign have made more sense if it had been designed to get men to prompt their female loved ones to go in for screening? Or if it was something that women did to prompt men – famously far more reluctant to think about their health – to get themselves checked for prostate cancer? Or to get their daughters the HPV vaccine? Or something aimed at getting all of us to lead healthier lives?