[Mtngrl]

Denise,

It's a good idea. There's a Christian group I know of that does nothing but get together and write letters to their elected officials about their concerns (centered on child poverty). No website. No logo. No corporate sponsors. They just put their convictions into personal action. That's far more noble and has far more integrity than the kind of "slacktivism" most people (including an earlier version of me. I have a Race for the Cure Team Captain hat) engage in. As Mother Teresa is supposed to have said, "we aren't called to be successful, we're called to be faithful." That's true of everyone who cares about fellow humans, I think, not just religious people.

Most of the celebrity messages about bc are like Andrea Mitchell's when she was diagnosed and treated. She "had" breast cancer. She now "has a great prognosis." Get a mammogram. It'll save your life. That's the wrong message!!! (So is the "one in 8" risk figure, but that's another conversation.)

Cancer is incredibly complex. We have made progress in the 40 years' war on cancer; there's just a whole lot more to figure out. They used to think it was one disease you got in different parts of your body. Now they know it's hundreds of diseases, maybe thousands. More is being learned all the time, and researchers are linking up.

I also do not believe there's a conspiracy to keep cancer a "chronic disease." I think health care workers, medical equipment suppliers, pharmaceutical companies and researchers are doing the best they can, under the circumstances, and they do it because they want to be healers. I believe even the "big pink" organizations that I criticize are well-intentioned. Nevertheless, they need to hear from people who question the frames they're putting on it. GE plans to spend $1 billion making mammograms nicer. I told them to put the money into basic research. Of course they won't. They make mammography equipment. They can quantify a "return on investment" to their shareholders from the warmer, cozier, prettier less awful mammography centers they build. If they funded research that led to a cure, there would be only psychic rewards, not money. It's in that sense that I believe the cure simply cannot come from the cancer industry. They aren't doing anything wrong. Capitalism is fine. Profit is fine. It creates jobs. It helps. But it is not set up to serve a larger public good.

Komen could redeem itself for me if it started (a) lobbying FOR health care reform instead of against it, (b) funding more research into causes and prevention, (c) refusing donations from organizations that make any money off of known carcinogens, and (d) hiring a truly diverse, truly independent, truly bipartisan board. Of course hell will freeze over before any of that happens, but there are organizations that do pass that test.

Those of us who have breast cancer have to think about ourselves, our families, and our survival, of course. But there are also legacy issues. These two bloggers worked to change the conversation, to shed light on the dominant narrative, and to get people thinking differently. I am so grateful that, in the midst of their own suffering and dying, they found a way to do that. That's worth 100 celebrities touting a pinkified message of "hope."