Learning from breast cancer

April 30, 2013

Over the weekend one of my friends took to Facebook to ask a very good question. Her four-year-old daughter was going to run a lemonade stand, and my friend wanted suggestions “to incorporate an element of giving into the project”. Which charity should the daughter start supporting with her lemonade-stand profits? There were some very good answers, but there was also one woman who suggested, of all things, breast cancer research.

The Facebook post appeared at roughly the same time as Peggy Orenstein’s excellent 6,600-word NYT Magazine cover story on the problems with the breast cancer industry. Orenstein concludes:

It has been four decades since the former first lady Betty Ford went public with her breast-cancer diagnosis, shattering the stigma of the disease. It has been three decades since the founding of Komen. Two decades since the introduction of the pink ribbon. Yet all that well-meaning awareness has ultimately made women less conscious of the facts: obscuring the limits of screening, conflating risk with disease, compromising our decisions about health care, celebrating “cancer survivors” who may have never required treating. And ultimately, it has come at the expense of those whose lives are most at risk.

There are broader lessons to be learned from what we’re seeing in the world of breast cancer.

Firstly, Americans are bad at statistics. When it comes to breast cancer, they massively overestimate the probability that early diagnosis and treatment will lead to a cure, while they also massively underestimate the probability that an undetected cancer will turn out to be harmless. They’re bad at pathology: they’re easily convinced that something called ductal carcinoma in situ (DCIS) is a form of cancer, for instance, partly because the cancer industry insists on referring to it as “Stage Zero” cancer. They’re bad at biology: they think that it’s physics, basically, and that cancers are discrete, localized growths which start small and get bigger, and that the earlier you find and treat them, in large part by physically cutting them out of the body, the more likely you are to be cured.

But bigger than all of these is the fact that Americans are loving, compassionate people who really want to think that they can help, or make a difference. So they wear pink t-shirts, and ribbons, and football cleats; they spread the word in the name of “awareness”; they file up in their millions for mammograms and encourage everybody else to do so as well. (“If you haven’t had a mammogram, you need more than your breasts examined.”)

Orenstein does a good job of glossing the unpleasant consequences of such actions. Money which could be put to research into treating metastatic cancer — the kind of cancer which kills you — is instead put overwhelmingly into “awareness” campaigns and mammograms. There’s an epidemic of overtreatment, which carries massive physical, psychological, and economic costs. (And even attempting to measure such costs is considered almost treasonous in the cancer community.) More recently, the pink wave has spread to teenage girls, who are being educated, as Orenstein says, “to be aware of their breasts as precancerous organs”.

When a loved one dies of breast cancer, we all want to feel that there’s something we can do, some way we can help, some possibility that might prevent other people going through the same thing. The urge which causes people to donate to the Red Cross when there’s a big natural disaster? Is very similar to the urge which causes people to donate to the Susan G Komen Foundation when they have a nasty run-in with breast cancer.

But there are much better places to send your money than Komen. In a follow-up blog post, Orenstein points to Breast Cancer Action as one of them. It doesn’t have the feel-good aura that Komen does, and it’s unabashedly political. But it’s passionate, it’s reality-based, it doesn’t hide the people who are dying of breast cancer, and it doesn’t pretend that we have a way of stopping that from happening.

There are lots of reasons why people give to charity, and there are lots of reasons why some charities grow into Komen-sized behemoths while others stay small. But scientists and policymakers shouldn’t give especial weight to big charities just because they’re big, and physicians shouldn’t fall into line behind the cancer industry’s talking points unless those talking points have a solid scientific basis.

More generally, it behooves all of us to be a bit more critical of our intuitions. The Komen Foundation has become a spectacular success by playing to Americans’ fallacious intuitions, rather than trying to gently correct them. That’s depressing. Especially when so many lives are at stake.


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