Breast cancer campaigning and the limits of awareness raising

As usual, campaigning about the impact of breast cancer — raising awareness about prevention, treatment, and the toll it takes — rates highly in the news these days. Just before I went on my holidays, I planned to write a post on campaigning on breast cancer awareness and the Komen Foundation, following a magazine article on the topic. Then out came yesterday the Angelina Jolie New York Times op-ed. It’s an evergreen story if ever I saw one.

Breast cancer is an important issue to me, as I’m obviously a female and I’ve had family members with some tumor scares. But I’ll admit I rejoiced when I read a New York Times Magazine article about breast cancer campaigning, the Komen Foundation, and just how far awareness-raising campaigns can go to save lives. In short: there is a limit.

Writing in the New York Times Magazine, Peggy Orenstein writes a deeply heartfelt and tough look at “Our Feel-Good War on Breast Cancer” (article of the same title). My favorite paragraphs are as follows:

Even the dog knows pink. Credit: Flickr, Renee V

Even the dog knows pink. Credit: Flickr, Renee V

“The function of pink-ribbon culture — and Komen in particular — has become less about eradication of breast cancer than self-perpetuation: maintaining the visibility of the disease and keeping the funds rolling in. ‘You have to look at the agenda for each program involved,’ Sulik said. ‘If the goal is eradication of breast cancer, how close are we to that? Not very close at all. If the agenda is awareness, what is it making us aware of? That breast cancer exists? That it’s important? ‘Awareness’ has become narrowed until it just means ‘visibility.’ And that’s where the movement has failed. That’s where it’s lost its momentum to move further.’

“‘They’re divorced from any critique of health care policy or the politics of funding biomedical research. They reinforce a single-issue competitive model of fund-raising. And they whitewash illness: we’re made ‘aware’ of a disease yet totally removed from the challenging and often devastating realities of its sufferers.’” [emphasis added]

In my advocacy and communications work, I spend a lot of my time raising awareness. Indeed raising awareness is such a behemoth and never-ending task that it’s easy to pretend success by citing metrics related purely to awareness raising. More Facebook likes! More participants in the annual fundraising marathon! More people who know what MDR-TB is!

But as a Swedish UNICEF campaign recently made brilliantly evident, increased “awareness” isn’t actually your end goal. Your end goal in your campaign — and here I mean the big picture, not the incremental goals — is a change in a paradigm or policy or behavior. An example would be a shift in US policy on food aid, or the UN passing a treaty on the arms trade.

As Orenstein writes, breast cancer campaigning in the United States has fallen short of achieving the big picture goal. Which, one would think, is fewer people dying of breast cancer.

Yes, making women aware of risks, prevention and supporting them in treatment are indeed vital to reduce deaths. Self-exams and mammograms are great, but they’re not a perfect solution and neither are double mastectomies despite a beautiful actress’s personal choice. As Orenstein notes, Komen and others would do well to consider putting more money into research, and pushing for policies that support women on breast cancer issues, for example ensuring appropriate health care that doesn’t break the bank for affected women and their families.

As a woman, I’m happy to get involved in a campaign to raise awareness about breast cancer — but only so long as that campaign is ultimately about reducing deaths, and not just selling pink stickers and t-shirts.

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