I had dinner over the weekend with a close friend who is a breast cancer survivor (her word) and a former avid participant in the annual marathons sponsored by the Susan B. Komen Foundation. Her status as a former activist was new. “Is this what we were racing for?” she said. She is skeptical by nature, and the brouhaha over Komen’s back-and-forth over funding Planned Parenthood last week didn’t make her angry. It merely flipped the switch that changes skepticism into cynicism. To paraphrase the old Phil Ochs song, she ain’t a marchin’ anymore.
I try to avoid bringing my knowledge about medical issues into private discussions (I’m not a doctor, and I take that caveat seriously. But as readers of this blog know, I’ve written extensively about recent controversies in breast cancer research, including the dust-ups over the U.S. Preventive Services Task Force recommendation that women under 50 can eschew mammography, and the Food and Drug Administration’s decision to withdraw Avastin’s approval for breast cancer). Yet my friend asked me pointedly about what I thought about Komen and why they did what they did. She knew nothing about the organization she had been supporting for many years, and now wanted answers.
I described the two most recent controversies where the organization had played what I considered to be a less than constructive role: mammography and Avastin. During the 2009 controversy over mammography, right-wing Republicans like Sarah Palin used the USPSTF recommendation to stoke popular fear about death panels and opposition to health care reform. Meanwhile, more scientifically-oriented breast cancer patient advocacy groups like Breast Cancer Action and the National Breast Cancer Coalition supported the USPSTF. The national Komen office, on the other hand, issued a call for “no impediments to breast cancer screening.” And during the Avastin controversy, even though clinical trials had shown no benefit to use of the drug in advanced metastatic breast cancer patients, Komen pushed for continued access for women who believed they were benefiting from it, and continued payment by insurance companies.
I also pointed out that Komen was typical of many big-name charities that engage in “cause-related marketing,” with its ubiquitous pink products, corporate tie-ins (Kentucky Fried Chicken?) and mass media advertising to draw participants to its fund-raising activities. The bottom line is that just 40 percent of the money raised goes to actual research and services. The rest goes to marketing and overhead, including the nearly half million dollars-a-year salaries of its top officials.
When I looked over its IRS 990 filing last week (they are freely available from the organization if you ask for it, or from www.guidestar.org), I was impressed by the breadth of the nearly $100 million or so they donated in the most recent year to research. Virtually every top cancer research center in the U.S. received substantial grants, often running into seven figures. I was very heartened by the fact that they provided significant funding and participated in the research that led to the creation of a global task force to bring cancer treatment to poor people in the developing world.
In short, I told her that her marching wasn’t in vain. Komen does good things with some of her money. But it is also a highly political organization, heavily influenced by the political ties of its leadership and its institutional ties to the corporations, including the drug and imaging machine companies, with whom it has financial ties.
Can Komen recover from this blow to its prestige? Here’s my advice. If it wants to win back the allegiance of the millions of women who participated in its marches, most of whom, I venture to guess, are also supporters of various feminist, pro-choice and generally liberal causes, it could start by depoliticizing its approach to scientific issues. It should defend groups like the USPSTF when they make recommendations based on objective readings of the scientific evidence, and not cater to mobs whipped up by politicians with ulterior motives.
Merrill Goozner is an award-winning journalist and author of “The $800 Million Pill: The Truth Behind the Cost of New Drugs” who writes regularly at Gooznews.com.