Monday, August 26, 2013

Why I Hike (aka Thinking Before Pinking)


One of the major paradoxes of the public discourse around breast cancer is that there are so many awareness campaigns and precious little actual awareness. I will admit that did not know before being diagnosed that chemo renders young women infertile—a devastating dimension of loss for many—or that hormone treatments that deprive the body of estrogen go on for five or ten years. Or that breast cancer that spreads beyond the breast is not curable.

When we see taxis, frying pans, cosmetics, even NFL players’ cleats swathed in bubble-gum tones, one could be forgiven for thinking that breast cancer is “no big deal” anymore. That we’ve got it all solved. A pink ribbon like a badge of honor over your lumpectomy scar, some sisterhood cheers and we’re all good. I’ve heard a few people say, “No one dies from breast cancer anymore.”

But there you’d be wrong. Forty thousand women in the U.S. die from breast cancer every year. That’s more than the entire population of the town I grew up in. That’s more than the undergraduate enrollment at the very large UC campuses I attended. That’s many thousands more than total automobile fatalities or gun deaths each year (both statistics hover around 33,000). It’s more than the 38,000 suicides that constitute a major public health crisis. And this 40,000 represents almost entirely women. From where I sit, it feels like a plague.


I recently became president of Bay Area Young Survivors(BAYS). We are a group of women diagnosed under the age of 45, and our membership is limited to those who live in the San Francisco area. At last count, we have 271 members. In the past year, we have lost thirteen women. Thirteen funny, smart, athletic bakers and bankers, yoga teachers and young mothers. It is devastating to witness, and it is by no means over.

Of pink-ribbon campaigns, Peggy Orenstein recently wrote inthe New York Times Magazine, that they have stalled in both their goals and their effectiveness. “If the goal is eradication of breast cancer, how close are we to that?” asks one researcher Orenstein interviewed. “Not very close at all. If the agenda is awareness, what is it making us aware of? That breast cancer exists? That it’s important? ‘Awareness’ has become narrowed until it just means ‘visibility.’ And that’s where the movement has failed. That’s where it’s lost its momentum to move further.”

We’re drowning in pink kitsch and we’re not getting anywhere. “Unlike the gay activist slogan silence=death,” Stanford anthropologist Lochlann Jain pointedly notes in her trenchant article "Cancer Butch," here “ubiquity=death.”

When I get angry about cancer, it is not because I have it—it’s because so many of us have it. And so little is being done to stop it. Granted, billions are poured into research, but it is primarily focused on treatment for early-stage disease. Very little goes into prevention—like taking endrocrine-disrupting compounds out of our plastics and our cosmetics. Or reducing exposures to toxic chemicals that are known carcinogens. In addition, a relatively small proportion of research money goes to metastatic disease—which is the very population that is dying for want of a cure. I certainly aver that finding better ways to treat breast cancer is a necessity, but both PREVENTION of the disease and finding a way to INCREASE SURVIVAL for late-stage disease are absolute necessities that are not getting their due.

To wit (from Orenstein again): the Susan G. Komen Foundation, the biggest national fundraising organization for breast cancer research, devoted “a mere 3.6 percent of its total budget” to metastatic disease.

The Breast Cancer Fund is one organization fighting hard to prevent the disease from happening—by eliminating the environmental causes of the disease and campaigning to protect women’s health BEFORE it is compromised. I am committed to their work and I am raising funds for it by participating in this year’s Peak Hike, where hundreds of men and women will summit Mt. Tamalpais on October 6.

I realize that it is a stock-in-trade element of cancer (or AIDS or MS) culture for those affected to raise funds for a national organization by doing a walk, a marathon, or a triathalon. After going through brutal treatments, doing something with your body that feels like a physical achievement is extremely potent, and the solidarity one finds on the racetrack or the trail can be life-changing. But until this point, I have been very wary of participating in such events or asking people around me to donate to them.

First of all, there is no way you will find me wearing pink of any kind. Secondly, if I am raising funds, I certainly don’t want them filtered through a corporation like Avon, who cynically sponsors a breast cancer walk while continuing to put harmful estrogen mimickers tied to tumor growth in the cosmetics women put on their bodies every day. (For more on corporate ‘pinkwashing’ see the brilliant documentary Pink Ribbons, Inc., available via Netflix). Other groups are simply not doing what they say they are; as Orenstein puts it, “Despite the fact that Komen trademarked the phrase ‘for the cure,’ only 16 percent of the $472 million raised in 2011, the most recent year for which financial reports are available, went toward research.” That’s a pretty lousy stat, if you ask me.

By contrast, the BC Fund puts 78% of its funds to use in programs. Here are some of their recent public policy efforts and victories:
·                -Their Campaign for Safe Cosmetics convinced Johnson & Johnson—one of the largest cosmetics companies in the world—to eliminate unsafe chemicals from its products worldwide.
·               - Their Cans not Cancer campaign successfully convinced the Campbell Soup Company to phase out the use of the toxic chemical BPA in its can linings.
·               -Thanks to their advocacy efforts in 2012, cosmetics safety got its first congressional hearing in 30 years, and the Safe Chemicals Act, which would overhaul our broken chemical management system and protect public health, was approved by the Senate Environment and Public Works Committee. Read more here.
·               - They are fighting hard to have California adopt new standards with regard to flame retardants in furniture that are known to be carcinogenic, and to implement California’s Safer Consumer Products program.

After a great deal of research and immersion into US breast cancer culture, I can say that the Breast Cancer Fund is an organization I believe in and wish to fight for. Please join me by making a donation or—evenbetter—come on the trail with my BAYS team on Oct. 6! We need more than early detection. We need to prevent the exposures that lead to cancers of all kinds—before there’s anything to detect.


5 comments:

  1. Great article...Thank you for sharing this! Education is such a key thing, we do this as consultants with Ava Anderson Non Toxic. Thank you for your courage and all you are doing for the cause. I will continue to share this article in hopes that it help raise awareness and more funds for the cause!
    Thank you!

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  2. Thanks for highlighting what is NOT being done, which is much greater than what is being done about breast cancer. Allegedly Komen spent as much on office furniture as they did on Metastatic Breast Cancer research (aka Stage IV/Advanced/Secondary/incurable breast cancer). I've lived with it for over five years, so statistically I have been dead for about 3 years!

    BTW METAvivor.org is the only organisation that puts 100% of their donations to Metastatic research, but they are a comparatively small organisation at the moment.

    http://inspiringmetastaticbreastcanceradvocacy.wordpress.com/

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    Replies
    1. I enjoyed reading your post and I agree that prevention is probably the key to beating breast cancer, and that many of the chemicals currently used commercially and industrially are likely prevention targets, as are other environmental challenges like low doses of radiation. The types of prevention-based programs that BC Fund and others are taking on are a step in the right direction, but there are still 10s of thousands of chemicals that have been grandfathered in under the Toxic Substances Control Act, which are in common use. So which ones are the bad ones?

      The social engineering/lobbying approach that is taken by organizations like the BC Fund is most effective when the basic science is on their side. I see at least two problems: 1) The experimental methods that are used to test chemicals for safety usually do not take into account the tissue specific nature of cancer progression, nor are the cells used to test necessarily normal to begin with or human. 2) Prevention-based basic research is exceptionally challenging to get funding for, particularly in the current economic climate.

      I suspect that both of these issues could be helped significantly by action from the advocacy communities.

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    2. Thanks for your insights here. I would just add that I think in many, many instances the science is already there. We KNOW that lead is a carcinogen, yet it continues to be used in many lipsticks. We KNOW that formaldehyde is a carcinogen, yet it appears in baby shampoo. We KNOW that compounds like BPA, DES, and parabens mimic estrogen, yet they are in the linings of canned foods and in personal care products that women use every single day. The burden should be on industry to prove the ingredients in their products don't threaten our health, not the other way around.

      As you aptly note, there is little funding for prevention-based research—because there are no marketable outcomes in funding prevention. But we can't continue to treat hundreds of thousands of women every year for breast cancer and blythely tell them we don't know what causes it.

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