Thank you, everyone, for your contributions to this conversation.
I've been thinking about how everyone has her/his own coping mechanisms and ways of grappling with difficult situations. There's no "right" or "wrong" way. We have different personalities, differing levels of support from others, different strategies for taking care of ourselves, and, yes, Trish, different diseases. I love you all, and I'm happy we have each other to talk to.
I think some of the "push back" that Komen has been getting may be helping steer the conversation in helpful ways. The article that Nancy Brinker recently published seems, to me, to be acknowledging some of the other aspects of breast cancer besides the pink, fluffy ones. Here's a link to it:
http://www.usatoday.com/news/opinion...men/50815702/1
She calls herself a breast cancer expert, and while I don't challenge her right to call herself that, it seems to be part of our "celebrity" culture. People appoint themselves thought leaders on various subjects, and somehow they get a lot of air time. It seems to me that sometimes they are simply people who are good at raising money.
Money is not unimportant, and being able to run a nonprofit well is challenging and admirable. But I've seen Nancy Brinker in many settings, and she keeps saying the best thing we have is mammography, and pushing for more of it, and she keeps talking about that 98% five year survival rate for early stage breast cancer. To me it looks like she's letting people assume that the situation is better than it really is. I certainly had no idea, before I was diagnosed, how awful even a "successful" course of breast cancer treatment can be. I've learned so much from all of you.
Of course funders need to feel good about their donations. But I have a problem with trying to solve public health problems with "free market" techniques. It doesn't work as well as a concerted, centrally coordinated, truly public effort would. To put humans on the moon we created NASA and got it done in 10 years. The "war on cancer" has been going on for 40 years, and it's a hodgepodge of research groups, for-profit companies, universities, and even the U.S. Department of Defense. One aspect of the "privatization" that should interest many of us is that Taxol was discovered by publicly funded research (National Institutes of Health), and then the rights were sold to a private company, Bristol Meyers Squibb, which makes a huge amount of money on it.
http://www.cptech.org/ip/health/taxol/
I don't think anyone deliberately sets out to make an "industry" out of a horrible disease. I don't think anyone has deliberately decided to make breast cancer a "chronic condition." But the financial incentives for doing that as opposed to finding a way to prevent or definitively cure it are stunning.
GE is doing a survey of women for suggestions of how to make it better. I told them I'd prefer that they put money directly into prevention and cure research. Of course, GE makes mammography equipment. This article repeats the 98% five year survival meme, of course:
http://www.healthymagination.com/blo...of-the-future/
Here's a link to a blog post by Gayle Sulik that provides food for thought on the breast cancer "business:"
http://gaylesulik.com/2011/10/19-birth-of-the-perpetual-fundraising-industry/