The Susan G. Komen organization is surprisingly controversial – what’s to argue about raising consciousness of breast cancer and funding research? But interestingly, there are quite a few points of view about the group.
Some of the controversy is political. This fact came to the fore when a flap arose after Komen decided to de-fund Planned Parenthood, which was getting grants to provide breast cancer screening and consulting. In the ensuing uproar, Komen backed down.
However, questions about the group’s approach, methods, and success were on the float years before Komen’s leadership identified itself with the pro-life camp.
Probably the Komen’s most visible critics are Gayle Sulik and Barbara Ehrenreich. Sulik is a Ph.D. psychologist and sociologist, author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health, who writes regularly for Psychology Today, among others. And we all know who Barbara Ehrenreich is: Nickeled and Dimed, Bright-Sided, Fear of Falling, and many, many others.
As the controversy swirls, you hear some ridiculous things about the Komen group. For example, you’ve probably heard that less than 20% of its donated revenues go to breast cancer research – which happens, as a matter of fact, to be where funding needs to go. And who hasn’t received the chain email claiming the group’s CEO and founder, Nancy Brinker, cuts herself a check in the amount of $684,000 by way of annual salary?
These and similar claims are not altogether straightforward. For example, it may be true that in recent years breast cancer research has received only about 20% of Komen’s program expenses; however, most of its program expenses go to funding public education, providing screening and diagnostic procedures, and helping breast cancer victims to arrange treatment and home care. All of these are well within the group’s stated mission.
As for the apparently excessive salaries: in 2013, according Charity Navigator, Brinker’s salary was $560,896. The group’s president, Elizabeth Thompson, was paid $606,461 that year. While that may sound excessive to us peons, each executive’s pay amounted to 2/10 of a percent of total 2013 revenues.
However, critics do have some legitimate complaints beyond grousing about the the tyranny of false cheeriness, the pink sentimentality, and the infantalization of women. Sulik points out that Komen has become a self-perpetuating entity unto itself, highly profitable to its corporate sponsors, which benefit from soaring rates of questionably necessary testing, overtreatment, and unnecessary surgery.
Several aspects of what Sulik calls the “pink ribbon culture” get in the way of real progress:
• Scientific controversies that could sharpen medical practice and enhance research are evaded or dumbed-down for the public. This especially is true of questions about the survival benefits of mammography, the disease’s complex and diverse causes, and the fact that we have exactly zero sure ways to prevent or treat breast cancer.
• The profit motive casts a murky shadow over the group’s activities. Komen exists within a multi-BILLION dollar cancer industry that has many profit centers: pharmaceuticals, technology manufacturers, the medical industry, large breast cancer organizations, and sponsoring corporations.
• The “warrior” image and the cheery millions milling about for a cure do not reflect the reality of the breast cancer victims who don’t fit the Pink Ribbon image.
It must be said, obviously, that the group has accomplished some very positive things:
• Its vibrant publicity campaigns have raised a lot of money for research and for support of breast cancer patients.
• Millions of people worldwide have been motivated to take action.
Yet Komen is also haunted by a number of negatives:
• It marginalizes the stories of women who don’t fit the approved profile: stories that betray their tellers’ realism, cynicism, ongoing struggle, or death.
• It plays on clichés about how women should look, feel, and behave.
• It celebrates women’s breasts as the avatar of what it means to be a woman, a mother, and a sex partner.
• It engages an absurd “warrior” metaphor that has little real relevance to the cancer patient’s reality.
• It promotes cheerfulness and optimism where they do not apply.
• Its activities and partnerships redound to the profit of a wide variety of corporate interests.
• It overstates the benefits of screening. Over any ten-year period, for every 2000 women screened, ten will be subjected to unnecessary treatment and just one will have her life prolonged.
In fact, widespread screening did cause death rates to drop briefly for white women in the late 90s, but no change occurred for African American women. In the present century, there has been no change in the death rate from breast cancer, despite soaring numbers of biopsies, lumpectomies, and mastectomies. Breast cancer remains the second leading cause of death for women, after lung cancer.
What’s needed is not marches, not teddy bears, not even regular screening of every female on the planet. What’s needed is real, evidence-based research.
As we know, some of our honored elected leaders are working hard to cut back on much of that research. Congress is attempting to cut funding to the National Science Foundation, and we can see more of that kind of thing coming down the pike.
Whatever you think of Komen’s politics or of its “pink” theme, the fact remains it spends a large portion of your charitable dollar on endeavors other than research. While these services are worthy, many organizations all over the country provide the same services, and some do it better than Komen does.
So it’s worth knowing that you can donate directly to institutions that conduct basic and applied research on breast cancer. If you have X number of dollars that you’d like to direct to the cause of eradicating breast cancer, you might consider bypassing the middle-persons and sending your money straight to the researchers themselves.
Here’s a list of some of the best known cancer research institutions in the country. If you go to their websites, you can find ways to donate or to inquire about donating.
• Canadian Breast Cancer Foundation
• Cancer Prevention Institute of California
• Johns Hopkins Kimmel Comprehensive Cancer Center
• M. D. Anderson Cancer Center
• Mayo Clinic Cancer Center: Research
• National Breast Cancer Foundation
• Stanford School of Medicine Cancer Institute
• The James: Ohio State University
• University of California Los Angeles Jonsson Cancer Center Foundation
• University of California San Diego Moores Cancer Center
• University of Michigan Health System Comprehensive Cancer Center
I can’t recommend what you should do, but it’s what I’m going to do.
This was eye opening. But don’t you feel your life might be greatly extended because of your treatment?
I can’t remember what started your odyssey in the first place, but I assume it started with a screening?
Would you have done anything differently?
No, absolutely not. My life was never in danger — except when I was laid on an operating table and knocked out with anaesthetics, one of whose potential side effects is stroke.
I went in for a routine mammogram and, to make a long story short, a DCIS was found. DCIS is NOT cancer. By definition it’s noninvasive. Nevertheless the standard practice is to excise it and to treat the patient as though she had cancer.
It was large enough that the surgeon could not remove it on three tries with a margin whose width satisfied her (even though she was at no-ink-on-tumor, which fits the 2014 ASTRO guidelines). I did not wish to subject myself to radiation and Tamoxifen or aromatase inhibitors (for reasons that will be explained in my upcoming book), and so we decided to go for a mastectomy. Because I also was not interested in enduring months and possibly years of continuing surgery to attach a fake boob to my chest nor did I care to go through the rest of my life lopsided, I asked for a double mastectomy without reconstruction. And I’m quite pleased with the results.
What would I have done differently? I wouldn’t have gotten that mammogram.
I believe the surgery was probably unnecessary, that I was over-tested and over-treated, and that I would have died a natural death of cardiovascular disease or some other cancer long before the DCIS morphed into anything invasive, if it ever did at all. But once an entity was found and there was no way of knowing, without endless surgeries, whether any actual invasive cancer was involved, there was no turning back.