As the summer wanes and October looms, I am struck once again about the fragmentation of the breast cancer advocacy movement.  The history of activism dates well back to 1952 and the American Cancer Society’s Reach to Recovery when a doctor had to give permission for a post mastectomy woman to be seen by a volunteer, lest she be too distressed by the encounter.   The Susan G Komen Foundation (now Komen for the Cure) started in 1983 to raise awareness. Others, such as the Women’s Community Cancer Project (Cambridge, Massachusetts), the Women’s Cancer Resource Center (Oakland, California), Breast Cancer Action (San Francisco), Y Me (Chicago), Mautner Project for Lesbians with Cancer (Washington, D.C.), and NABCO (New York) were focused on education and political action.  As these groups sprang up around the country, it served as a tipping point in the battle for attention to the problem of breast cancer.  These heady days led to the for the formation of the National Breast Coalition (1991), Department of Defense Breast Cancer Research Program (1992), the National Action Plan on Breast Cancer (1993), the California Breast Cancer Research Program (1993) and the Breast Cancer Stamp (1998). Many good women and men contributed to these early successes and we stand on their shoulders and by their sides.

Now as we head into October, anticipating the arrival of the pink tsunami, in some ways it feels like the original battle to end breast cancer has been co-opted by these annual celebrations of survival.  The messages are incessantly upbeat and rarely mention that many women still go on to metastasize, many still die, and the “survivors” live with a new normal based on the collateral damage caused by their treatments.  My recent experience with Leukemia has made me impatient and dissatisfied with the status quo.  While many programs, such as the National Breast Cancer Coalition’s Deadline 2020 and our own Army of Women, are valiant efforts to move us to the goal, it is going to take more than that to get there.

The goal of ending breast cancer is too important to leave to any one group or approach.  I think it’s time for the breast cancer organizations and foundations to start working together on projects that make sense.   We need to find opportunities to collaborate and speak with one voice. We don’t need to agree on everything, but we do need to rise above our differences to find ways and projects that we can work on collectively.   Only by working together will we ever be able to achieve the overriding goal we all share– a future without breast cancer!

 

Share →

13 Responses to It is time to work together!

  1. Catherine says:

    Woah – incredible post, and you have my agreement. Working together, pushing together – we need to overcome the status quo, and work together to ampify the strength of resources. I love the idea. It is not enough to chop off body parts and go through poisoning to reach that survivor status, which can so easily be ripped away. That isn’t enough. We should have a giant pink-teal-yellow-gold–orange-blue and all the other colours parade when the actual cure rolls into town. Now for that, I would definitely wear a feather boa and cheer like nuts.

  2. Sara Thal says:

    Call me a cynic, but I believe breast cancer has become an industry. Cure or prevent – doesn’t matter to those with the influence and the profits. Women are still dispensinle commodities in our society. As long as people are making buckets of money from diagnostics, surgery, treatment, etc. there will not be a cure, let alone prevention. There are 3 hospitals in my area with breast centers. Think of the revenue the hospital, the pharmaceutical industry, the manufacturers of pink t-shirts, pink sneakers, pink ribbons, etc. would lose. A friend of mine says if you want to go to the source of a problem, follow the money. Too many dollars would be lost by a variety of entities for prevention and/or cure to become a reality.

  3. Sharon says:

    Sad but unfortunately true, Sara. My sister, Patti b, died of breast cancer 5 years ago. she fought that horrible disease for 3 years. she was so tired of receiving pink ribbons and pink t-shirts and felt the same way you do. If 1 billion $’s was the prize to find the cure, i wonder if someone would. i care and i give, but always have the same thoughts as you do when i attend a grand opening or see the “pink” at most stores.

  4. Sue says:

    I couldn’t agree more with your article. I have had the pleasure of working for one of the orgs listed, sitting on the board for another, and fundraising for even more. As a 2X breast cancer survivor, I truly believe that knowledge is power. My work focuses on all cancers, so I don’t really see “pink” as my #1 priority. I know that if all the orgs were to work together we could make a larger dent and finish the fight against the disease. Within the past few months I have personally lost two dear friends to bc…both were under the age of 44 and both had long, hard battles. I have also experienced the struggles of creating a new “normal” and what seems to be a never ending battle. Dr. Love, I hope that you will continue to use your voice to join forces.

  5. Susan says:

    Susan this is so well said. We must all work together! This is such an important part for all of us to move forward. I am so glad you wrote that we all don’t have to agree with one another because it’s so important that even if we have differences of opinions about things, we “need to rise above our differences”, so that we are united together working on projects. Thank you for writing this great post.

  6. Rosemarie Rogers says:

    I remember in the early 90′s having recently finished my treatment (radiation and chemotherapy), I had just become involved with Y-Me. They sponsored a conference for minority women that I still recall due to the number of minority women who attended. Information was presented that I found powerful and informative (keep in mind I was new to breast cancer advocacy). As the conference culminated with a Town Hall meeting, I was struck by the number of women who came to the microphone and talked about their own “organizations” and what “they” were doing. I squirmed in my seat as I listened to them repeat the same comments over and over. Maybe in a different way, but it all was the same. Those who know me, know that I’d rather do something behind the scene rather than be up front. But I had to approach the microphone and make my statement. “Imagine what could be accomplished if every organization who talked about what they did to support women, fund research, and find a cure” could accomplish if ego’s were put aside. That was over 15 years ago, is it fair to say “the more things change the more they stay the same”?

    By the way, I was diagnosed with cancer in the month of October (1995) and did not know that was Breast Cancer Month. I’ve come to dislike it, because I’m flooded with emails, hate going into the stores and seeing the “pink” knowing that in a vast majority of those cases, very little collected will actually benefit breast cancer.

  7. Jody Schoger says:

    I too am impatient. Thank you for giving voice to the need to harness and maximize the collective strengths of every breast cancer organization out there.

    Because every day the funding stream continues to dilute. Every day another new nonprofit forms to assist breast cancer survivors, with the same information on cancer, treatment, and side effects when what women with breast cancer need are more effective treatments, accurate information about recovery, recurrence and financial assistance with out of pocket costs.

    Nothing short of a federal mandate will get us there; and a conference on a international level to convene all the world’s leading breast cancer leaders in one place until a workable, collaborative plan is in place. The problem is every organization is in for its own survival; but I have to tell you, at this point my life, and the lives of all my other sisters and friends with metastatic disease, I want to survive, too. Recently doctors have started to refer to breast cancer as a chronic, relapsing disease. If that is how we are going to frame breast cancer then that is what we’re going to get: different combinations and strengths of the same agents to add a month here, another week there. I do not accept this. There’s nothing about a “breast cancer as chronic disease” that should please any scientist, advocate, or survivor. I urge anyone who thinks breast cancer as a chronic illness is acceptable to talk with men and women in the diabetes community about daily monitoring, potential blindness or crippling neuropathy….. all problems women can face on perpetual chemo.

    In the interim we need to encourage and foster the development of more physician/scientists so they, in turn, can work from bench to bedside. The failure of our society to understand and embrace science is apparent with our feeble progress against cancer.

    When I was diagnosed in l998 I felt confident that this disease was close to being under control. Nothing could be farther from the truth.

    Thanks for writing today.
    ~jms

  8. Finally, someone in this movement is making sense! For far too long, the powers-that-be in the breast cancer community have wasted valuable time encouraging division, not unity. Congrats on taking the first step forward in what I hope will soon be a collaborative effort to end breast cancer. Let me know how I can help.

  9. Leigh Bogle says:

    I’ve been waiting a long time to here someone of influence say that. I’m so tired of well intentioned people thinking that if you don’t act happy you don’t have a positive attitude. I don’t want to be labeled “survivor” that sounds to me as if I just made it through some illness, if I have to have a label then call me “fighter”.
    I completely agree with you.

  10. Bernette Ford says:

    I’ve never posted on any of the breast cancer sites I visit, but I am moved to say that Dr. Susan Love’s post has
    inspired me. I’ve long been disturbed by the apparent competitiveness among “our” organizations. It’s high time for cooperation! BF in Brooklyn

  11. Margaret Shallcross says:

    In spite of all these groups, awareness campaigns, websites….. the fact is is that we are still left with surgery, chemo and radiation as our only options. People… it’s been more than 30 YEARS like this.
    I,too, believe the breast cancer is now an industry with its eye fixed only on the bottom line. I no longer want to hear the words ‘treatment’ or ‘therapy’. I want to hear the word ‘CURE’ spoken with same passion as when they are trying to sell you on the pink ribbon.

  12. Well said. As another October fast approaches, it’s hard sometimes to not get discouraged. Working together would be one gigantic step in the right direction that’s for sure. At least listening to each other would be a start. I find it simply deplorable that the metastatic breast cancer community has been so excluded in all the pink hoopla. It’s ironic that the group needing the most support often gets left in the shadows. It’s also unacceptable. Thanks for your voice.

  13. I have been trying to get some consensus about having the 4th of April (4.4.2014) as the first Stage IV Metastatic Breast Cancer Awareness day because I just can’t see how MBC can get anywhere being part of Pinktober. This probably will not happen, but this is not supposed to be devisive, but as a way of concentrating resources on something that is ignored by the Pink movement.

    I started a Metastatic Breast Cancer Advocacy group on facebook partly because so many of us don’t feel supported by mainstream organisations. However it is about trying to get people to take action, which is not easy with those with MBC, but also to encourage members to take part in campaigns that are already in place. Even just commenting on articles and blogs is a form of advocacy. In my experience it does take some form of ego to get things done, and maybe I just don’t have that type of ego!

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>