Thinking critically about Komen

I just heard a story about the Komen Foundation meeting with supporters this weekend, trying to reassure folks that they would be able to raise the necessary funds to participate in the 3-day walk -- and that Komen was still an organization they wanted to be involved with. Several things in the story frustrated me, and, well, why not share?

First, I want to address the "progress" they cited. Once again, I heard that early detection saves lives, and that's just not true. Their proof? The five-year survival statistics have improved. I can't find the basis for the stats they gave, which implied dramatic progress in recent years, but I know that progress hasn't actually happened. If the survival rate (the percentage of people still alive five years after diagnosis) has improved, it's because so many more people are being diagnosed with cancers that would never have killed them. In this article, Dr. Susan Love said, “At least 30 percent of tumors found on mammograms would go away even if we did nothing." The article used the quote to demonstrate the power of the immune system; I also see it as an indictment of our emphasis on screening everyone and treating even tumors that would cause no harm.

Additionally, unfortunately, five-year survival statistics don't tell you anything about quality of life. And they're rarely broken down for the breast cancer subtype. Most sobering, consider that Sandy would be included in the five-year survival statistics. She was originally diagnosed on July 5, 2006; on July 5, 2011, we learned she had only a couple of weeks left. But she made it to that all-important five-year mark!

Sandy in August 2006, a month after her diagnosis.
We'd have been able to marry if there'd
been a cure when her aggressive cancer was
initially diagnosed, or when it returned a few
years later. Or if the Washington Supreme
Court had delivered a different opinion that
month. If I ran the zoo, we'd have had a cure
and a good court decision that August, and
she'd be healthy for our sixth wedding
anniversary this year.

I also got angry listening to people say they weren't interested in the politics; they were walking with Komen because they wanted to cure cancer. But the truth is that the political game that Komen has been playing for many years is inhibiting progress toward a cure. I would love for Komen to focus more of their money on useful research and to appropriate services for women in need. But even their back-pedaling on Planned Parenthood hasn't been clear; they haven't actually said they'd fund the organization again, just that they'd allow them to apply for funding.

I'm not buying it. I want real prevention (there is no known way to prevent breast cancer now; mammograms are diagnostic, not preventative). I want a real cure, and until we have one, I want effective, non-toxic treatment for people who genuinely need it, no matter their financial resources. I want us to develop better tools so that we understand who needs treatment and who doesn't. We deserve better than mammograms. We deserve better than chemotherapy. We deserve better than Tamoxifen. And frankly, we deserve better than Komen.

I'm feeling bitter today. I can't help thinking of all the money Komen has raked in over the years, and wondering whether Sandy might be alive to celebrate Governor Gregoire signing our marriage bill today had Komen not been playing politics, courting corporate sponsors, and cultivating their pink-ribbon machine at the cost of genuine breakthroughs in research.