Even before her own breast cancer diagnosis, my wife Uzma began having mixed feelings about Breast Cancer Awareness Month. Those feelings got even more mixed once her cancer came back and became stage 4. “I don’t mind the fundraising,” she explained, “But I sort of think that much more needs to be spent on funding research into treatment than we are doing now.”
She agreed that awareness campaigns are important to keep educating women about the importance of screening mammograms. According to the CDC, more than one-third of women over the age of 40 report not having a mammogram in the past two years. The message of journal articles like this one, published after Uzma’s death, must be summarized in simple language for all women. Women with dense breasts need education on the poor value of mammogram screening for them. Some women need sensitive education to help them overcome their anxious avoidance of breast cancer screening.
In 2011, two years before her cancer diagnosis, Uzma discovered that the charity then known as Susan G. Komen for the Cure was only spending 15% of its program funds on breast cancer research. Since then the charity has dropped the phrase “for the Cure” from its name. However, the non-profit and its affiliates still host hundreds of “Race for the Cure” events every year. Komen has since increased its funding on research to almost 29% of its program funds. Uzma believed that as the 800-lb giant in the breast cancer charity universe, Komen has a responsibility to spend much, much more to fund treatment research.
Since then we found other organizations, smaller than Komen, that spend a greater part of their program expenses on research. Breast Cancer Research Foundation spend 100% of its program funds on research. Metavivor, a much smaller charity, spends almost 90% of its program funds on research focused on stage 4 breast cancer. Komen’s size gives it an outsize impact. For that reason alone, it remains an organization worthy of our support. But those of us who want more of our support to go towards research must explore other options.
Those who want to keep funding advocacy and education ought to consider how to make those activities more focused. For example, research studies since at least the 1990s show that mammograms are falsely negative twice as often in dense breasts compared to less dense ones. Negative mammograms will give a false sense of security to some women with dense breasts. Focusing at least some of the awareness funding on the issue of dense breasts is worth considering.
As October approaches, I ask myself, “Uzma wrote a book to help people gain a visceral understanding of the breast cancer experience. What would she do with her book if she were still around?” I think she would make people ponder how to channel their donations according to their interests — awareness vs. research. She would reduce the price of the book for breast cancer awareness month. She would urge everyone who buys it during this time to donate the money they save to their favorite breast cancer cause.
So here it is: Both the paperback and Kindle versions will sell at a reduced price through October. I am calling it the Mixed Feelings Book Sale partly because of Uzma’s mixed feelings about October. And partly because of my mixed feelings about helping get her book out without her on my side.