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My Breast Cancer Advocacy Focus: A Big Shift

I never set out to be a breast cancer advocate.

Two years ago I was looking for a good cause to align with, as I set out on a cross-country motorcycle trip. When I asked people for suggestions, breast cancer of course came up, but it wasn’t my first choice for a cause. The proliferation of pink events and high-profile news stories for breast cancer made me think I should turn my efforts to something that actually needed some help. Breast cancer seemed to be doing fine without me.

how's this for pink bling?

How's this for pink bling?

But when I found out about a group of women from the US and Canada who rode their pinked-out bikes each summer to raise money for breast cancer research, things took off for me. I checked the  Charity Navigator scores of the beneficiaries I raised funds for, and thought my due diligence was complete.

I strapped a pink bra across the windshield of my own motorcycle, a modest effort compared to some of my fellow bikers (like the one pictured right), but nonetheless, people were attracted to that bra. They knew I must be doing something for breast cancer, and stopped me to tell me their story or the story of someone close to them. There were times I’d hear one story at the gas pump, another in the bathroom, and more in the concession area during one stop. I had no idea there was so much cancer in the world. My book, Live Full Throttle: Life Lessons From Friends Who Faced Cancer was born of these conversations from the road with strangers and from my fellow motorcycle riders.

 Where’s all that money going?

This year, as I began touring with my book and preparing for my annual road trip, I decided to scratch the mental itch I’d been feeling, the one that suggested there might be something more important I could do for breast cancer causes than raise money. As I deepened my understanding of the cancer charity landscape, I learned that a well-run, high-scoring charity could nevertheless be pouring money into programs that have nothing to do with preventing or curing the disease, the things that interest me most.

I wondered why there was so little money being spent on the environmental and nutritional factors that contribute to cancer rates, and why so much money was channeled to pharmaceutical companies, which make drugs that don’t prevent cancer at all. I started digging, and my research led me to the film Pink Ribbons, Inc. based on a book of the same title.

Pink Ribbons lays bare the conflicting interests of those claiming to have a passion for curing breast cancer, including some of the most-recognized breast cancer charities. The movie also examines how people have been lured into shopping for a cure instead of being activists–holding charities, companies, governments and other institutions accountable for reducing the incidence of all forms of cancer.

I learned that while the Susan G. Komen Foundation has donated over $600m to basic clinical research and the annual Avon walks have raised over $380m for breast cancer causes, there is little to no coordination for the research that’s funded. Indeed, the lion’s share of research dollars goes to Big Pharma, which has no economic interest in curing the disease. The US federal government’s National Cancer Institute leads 37 agencies, yet there is an endless repetition of research that seeks to find an incremental increase in life (rather than prevention or true cure). Few are researching the kinds of  cancers that metastasize.

The vile business of “pinkwashing”

I also learned about the vile practice of “pinkwashing,” which occurs when companies that produce products that increase the RISK of breast cancer also MARKET these same products to BENEFIT breast cancer.  Avon is guilty of pinkwashing, since it both sells cosmetics that are laden with carcinogens and uses the breast cancer cause to sell those cosmetics (see the above statistic on money raised).  Revlon and Estee Lauder are equally guilty, but pinkwashing transcends cosmetics peddlers. Ford Motor Company is another (of many), since it markets its Ford Mustang to breast cancer patients, while its manufacturing processes are linked to all kinds of cancers.

I’ve decided there should be a special place in hell reserved for pinkwashers like Eli Lilly (because our courts have now decreed that corporations are people, I guess that means they also have a hereafter). Lilly is the only company in the world making and distributing rBGH, an artificial growth hormone found in many dairy products that is linked to increased risk of breast cancer. Eli Lilly also manufactures breast cancer drugs. That’s a highly lucrative profit cycle, deserving of outrage.

Here’s what I learned about the pink ribbons industry from Pink Ribbons, Inc.:

Pharmaceutical companies use money to provide a marketable product, something that will increase survival for a period of time — even three weeks — but which can be very profitable for that slight period of time. “They don’t seem to be interested in prevention, but this is how capitalism works.” ~Ellen Leopold, author of A Darker Ribbon: Breast Cancer, Women and Their Doctors in the Twentieth Century

Big players on the nonprofit boards of the “cancer establishment” are filled with members from pharmaceuticals, chemicals and energy industries. This is a co-mingling of those responsible for the perpetuation of the disease with those trying to cure/prevent it. ~Dr. Samantha King, author of Pink Ribbons, Inc,: Breast Cancer and the Politics of Philanthropy

Of all the millions raised, only 15% goes to prevention; only 5% of research goes to the environmental cause of breast cancer.

Dr. Susan Love

What science knows–and doesn’t–about breast cancer

Here’s what I learned about the disease itself:

>50% of women who are diagnosed with breast cancer don’t have one of the major risk factors that we know about…but most of the research is not targeted at answering those questions.”~ Dr. Mhel Kavanaugh-Lynch, Director of the California Breast Cancer Research Program at the University of California

“Slash, burn and poison*…is what you do when you don’t understand (the disease).”  Dr. Susan Love, President & Medical Director of the Susan Love Research Foundation

 “Only 20-30% of breast cancer happens in women with risk factors. If we can only explain 20-30% of breast cancer, we don’t know what causes it. We’re missing something big and if we keep looking at the same risk factors we’ll miss it.” ~Dr. Susan Love, President & Medical Director of the Susan Love Research Foundation

There are three categories of people who get a cancer diagnosis from a mammogram:

      1. Those who have treatable forms of breast cancer, for whom early detection saves lives
      2. Others who have something that will never be life threatening, and if it’s treated, the treatment makes them sick/kills them
      3. Those who have a form of the disease that’s so aggressive that no currently-available treatment is going to heal, no matter how quickly it’s found

 Questioning our worship for the workings and intelligence of free markets

I’ll never look at cause marketing the same way. THIS is what happens when we throw important public health issues out to the markets for resolution. OK, that decision will take a while to reverse, so in the meantime, how do intelligent, concerned and earnest breast cancer advocates work within this landscape?

Breast Cancer Action suggests asking these five questions before you use your purchasing power to “benefit” breast cancer campaigns

1.         How much money from your purchase actually goes toward breast cancer? Is the amount clearly stated on the package?

2.         What is the maximum amount that will be donated?

3.         How are the funds being raised?

4.         To what breast cancer organization does the money go, and what types of programs does it support?

5.         What is the company doing to assure that its products are not actually contributing to the breast cancer epidemic?

What this means for my 2012 road trip

I’m still going to travel with a pink bra on my motorcycle. But instead of raising money, I’m going to educate.

While we live in a toxic world, we have SOME choices for what we expose ourselves to. Personal care products are a starting point for my education efforts. I want to help people prevent cancer or decrease their chance of contracting it, so I’ll hand them cards with links to both the Environmental Working Group’s Skin Deep database and to Good Guide, where they can research the products they buy for health, environmental and social responsibility

How about it, readers? What do you think I should do with my advocacy efforts? How would you like to join me?

*slash=surgery, burn=radiate, poison=chemo

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About Tamela M. Rich

From Charlotte, NC, Tamela writes books, articles, speeches and presentations for business professionals. From "the road" she writes about the people, places and experiences she discovers and the life lessons she learns from them. Invite her to share some of her lessons from the road at your next event!

8 comments

  1. Well spoken, Tamela, and well thought out. As a survivor of a non-breast cancer, I’d love to see you expand your horizons in your education campaign. But even if you don’t, I admire your new mission.

  2. Thanks, John. I’m open to any and all suggestions.

  3. Tamela,

    Hello good friend,

    I am so proud and excited about your new journey. I have always been a littly shy of the whole “ribbon” thing and when my sister, Gayle, was diagnosed with her rare cancer, I almost felt like she was a lab rat at times, oh lets try this and lets try that! Not what kind of cancer is this since it is so rare and what may really work without killing her sooner by so many different types of chemo (yep the drug companies) and maybe letting her have a better quality of life with the short amount of time that she did have. Tamela, if you recall I have a wonderful story and a way of getting the word out. If you need me here in the Midwest let me know. I would love to join the education part of the whole cancer issue.

    May you have God Speed on your journey and hope to hear from you soon. You are such a special person and I know this will make a huge difference in the way people see the way charities work.

    Hugs,

    Mary

  4. Mary, I remember meeting you in Iowa and seeing your beautiful quilt. I still have the glass ornament you so kindly gave me.

    Gayle’s story reminds me of one of the things a Stage IV cancer patient said in the Pink Ribbons movie, “We’re people, not just a little pink ribbon.” That same woman later said, “You can die in a perfectly healed state,” which if I recall, was also Gayle’s experience.

    I’m at the beginning of this new journey and I’m eager to see what can be done. Raising money seems to be easy, compared to raising awareness and the hackles of very powerful and entrenched interests. My hope is that we can look forward and make change, not spending useless time and energy looking in the past, except to extract information about how to do a better job from here.

    I got this from one of the people who attended the screening of Pink Ribbons here in Charlotte:

    I am not sure how one says to the world, “Look, lets join hands, share information, coordinate research and results, establish accountability with financial transparency, acknowledge our environment is as sick as we are.” I think most people, especially women, feel powerless. ( I was taken when I saw the film at how this pink movement seems to supplant the activism women imbibed in past years, even in my time.) Is there a Ghandi among us? …it seems by parsing the disease our efforts are diminished, when having special interests is fine, being specific has merit, but going after the whole, the causes, would be incredible if corporate American can and will somehow realise that lives are more important than the bottom line and suffering

    Here’s another gem:

    “I went to the jewelers the other day to get something repaired and noticed watches with pink crystals. Enough, I say. I also noticed bracelets of parachute cords that could be purchased on the behalf of soldiers, with the profits doing to some organization. Enough. I wish I knew what else to suggest. I think an overhaul of how nonprofits become big businesses. I have the same concerns about the military veterans. Everyone is getting into the act. There are so many players that the beneficiaries are overwhelmed and don’t have a single point of entry.”

    Yes, Mary, you are needed. Needed by me and by people you may never meet. Let’s join hands.

    I am investigating the strategies of the National Breast Cancer Coalition’s “Deadline 2020 Project.” I wish more would join me in this investigation.

    Is this the solution? If not, what is?

  5. Pardee Henderson

    Thank you, Tamela, for pointing out the obvious!
    I expect there are many of us who intuited ‘something not right’ regarding cancer fund raising but did not know what. Culture, including the powerful culture of marketing, permeates our lives and often overrides what we intuitively know.

    My dear mother had breast cancer; yet, I have avoided all big name activities. I have not known why and have felt a bit uncomfortable not supporting them as it was as if I did not honor my loving mother. But something just did not feel right, and I was not drawn to participate. I really expect there are many, many others who feel the same way but do not know why, ingore it, and participate anyway.

    Thank you, Tamela, for providing the energy and insight to catch our attention. You have gifted us with the reminder to honor ourselves and our inner knowing. You have gifted us with knowlege for action with positive potential.

    Love & Laughter,
    Pardee (one of your old LLL friends!)

  6. Great hearing from you, Pardee!

    Having met hundreds of people who DO participate in, as you call them, “big name activities,” and having participated in the Conga motorcycle rides, I embrace the esprit de corps that these group activities engender. It is easy to just go along and not ask questions–and more socially acceptable because of the traction these efforts have gained.

    I don’t want to pour cold water on anyone’s efforts; I come at this from a position of justice.

    You just can’t make up some of the sins that “Big Pink” has committed over the years. It’s a case of truth being more unbelievable than fiction.

    I am investigating the Breast Cancer Deadline initiative of the National Breast Cancer Coalition. Pardee, as a medical professional and women’s health advocate, would you give me your analysis?

    Tamela

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