Lives v. Profit

The ever-widening rift in the breast cancer community troubles me. On one end of the divide are women, some of whom are living with or have already survived a bout with cancer, and who live with the fear that it will reappear as a deadly metastatic diagnosis. With them stand millions of women who know it could be them, and want nothing more than to do right by today’s survivors, and protect themselves and loved ones from ever facing breast cancer.

At the other end of the spectrum are the movers and shakers of the breast cancer world…the organizations and people who use this disease to either turn a profit or control the pink-ribbon funds raised based on their own agendas. More than more, they seem to seek to drown out the voices of survivors and, with smoke-and-mirror tactics, manipulate emotions to increase sales.

I feel comfortable speaking for all women who have been diagnosed with breast cancer when I say that we would universally prefer a world in which cancer ceased to exist. We have faced this disease head-on and we know exactly what it can do. We do not ever want to see our mothers, sisters, daughters, fathers, brothers, sons, friends or loved ones…nor yours…walk this path. We want breast cancer eradicated more than you can fathom.

We also know the fear that others have of a future diagnosis. Most of us have lived that as well. We know that it is hard for women without breast cancer to hear that they can’t be kept safe; that there are only limited actions to take, and no vaccines or scans that prevent this disease. We know the frustration when study after study shows that mammograms are simply inadequate, or that early detection does not, in fact, save lives. We know that, as a result, we have left each and every woman hanging off a precipice. And we know that facing that danger is often so overwhelming that we have nourished a collective, yet false, belief that what we really need is awareness.

The problem is this…awareness and education alone cannot prevent future cancers, nor save our lives. The ONLY thing that can is scientific research. So we watch as billions of dollars are spent on efforts to reinforce this false sense of security, even while our lives hang in the balance, and we can’t help but grow angry.

All the more so this is true for those of us living with metastatic disease. While roughly 20-30% of breast cancer will eventually become metastatic and account for 90% of breast cancer deaths, only 3% of the research funding are invested in this area of research. That is 3% of just the research dollars – imagine what a minute fraction that is of ALL breast cancer funds. While I trust that it is not intended, the message is striking: you are dying, and so we have already given up on you.

Despite having been abandoned by the fund-raising machines that use our disease to make money rather than save lives, we are the ones stepping up for clinical trials, we are the ones trying to get the right messages out there, and we are the ones whose voices so often seem to go unheard.

When we seem to come out frustrated and angry, guns seemingly drawn, it is because this matter is urgent. Life-or-death urgent. We simply will not survive if this disease isn’t cured soon, and we need policy and decision makers to hear us. We need everyone to stop seeing pink-ribbon sales as the panacea.

As survivors we don’t argue whether people need to be educated and aware…of course they do. We argue because we do not think that the lion’s share of the limited breast cancer funding should continue to be diverted away from research in an effort to delude ourselves into thinking that we can be kept safe. With rising incidence rates and near-static mortality rates, where exactly do we think our billions of dollars in “education” funding has gotten us? We must stop perpetuating a false sense of security; awareness and education has failed to cure breast cancer because is cannot cure breast cancer.

It is quite a divide that stands between us…one of education vs. cure and profit vs. lives. Those who favor education and awareness have consistently failed to draw a straight line from their efforts to a cure. Until they do, they should not expect those of us who are dying while they educate others to quietly watch the pilfering of funds for anything short of a cure.

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10 Comments (+add yours?)

  1. gabbymottershead
    Nov 13, 2011 @ 05:16:20

    too true, millions of dollars being raised for ‘awareness’, who is not aware??????????????

    Reply

  2. elynjacobs
    Nov 13, 2011 @ 05:50:54

    Lori, this is a great post. One thing I’d like to add is that more funding/insurance coverage for integrative modalities should be part of the change. Assistance and awareness that dietary changes, stress reduction and other therapies can greatly improve and perhaps even extend the lives of those with metastatic disease, but many cannot afford it or are not aware that these therapies can help. Short of a cure, until we get there, I would love to see CAM as part of the plan.
    Thank you for your elequent post…it broke my heart to watch my mother suffer so greatly while all that could be done was to further posion her to death. I live to see a world where the profits of awareness and toxic chemicals are no longer sononomous with cancer.

    Reply

  3. nancyspoint
    Nov 20, 2011 @ 09:46:32

    Lori, What a well-written thoughtful post. It does sometimes seem like there are two sides to this ‘cancer surviving existence’ doesn’t it? I am so tired of being seen as ungrateful for not appreciating the pink madness. I hate to think your statement, “While I trust that it is not intended, the message is striking: you are dying, and so we have already given up on you,” is true, but I can’t help but wonder too… The lack of dollars sent toward research is deplorable. The lack of attention given to the mets community in general is just unacceptable. One thing I do disagree with you about, though, is this; I think you and I are on the side of the ‘movers and the shakers.’ I for one, don’t intend to keep quiet. I don’t think you will either. Thanks for the post.

    Reply

  4. Jody Schoger
    Dec 02, 2011 @ 14:36:06

    Lori,
    This is an excellent post and topic. But I disagree with one point. To me the movers and shakers you identify are the survivors themselves, not the organizations pushing awareness. It’s survivors like you and writing like this that points to the need for change. That is where the moving and shaking is — not the glut of “breast cancer awareness” groups that raise too much money going God knows where. There’s so much waste. And if pointing that waste out constitutes a growing rift, then so be it.

    Currently funding for breast cancer from NCI is $631.2 million, which is more than twice the allocation for lung cancer ($281 million). This doesn’t even include funds raised by private organizations so we can only guess at the total. So while I’m not especially convinced that more funds spent on metastatic research per se will accelerate successful treatments I do know that more specifically targeted research will. The majority of clinical trials are for women with metastatic disease. And I also believe that research in mutations in one cancer often benefits others cancers. What we need is more genomic research, period.

    And following up on Elyn’s point, there IS a lot of lifestyle related research (exercise, yoga, green tea, support etc). In fact I suspect there are files stuffed with studies that aren’t being accessed. Sources include the National Cancer Institute, the Office of Cancer Survivorship at NCI, etc.

    But this is a great place to start. Keep moving and shaking,

    Jody

    Reply

  5. Meg
    Dec 04, 2011 @ 10:28:08

    Great post. Thank you. I especially resonate with the line “…you are dying, and so we have already given up on you.” I’m Stage IV and can’t go on disability or I will lose my CAM coverage by being put on Medicare. Ridiculous.

    Reply

  6. AnneMarie
    Dec 07, 2011 @ 09:49:19

    Lori,

    WE are the movers and the shakers….. those of us in “survivor” purgatory and our sisters who reside in “metastatic” hell. I am being blunt not to upset you but to accentuate your points. When those of us who are in purgatory bitch about the sea of pink, we come off as ingrates. When those of my sisters who are in hell express your opinions, too often you are silenced. It’s not popular to mess with what I like to call the great illusion of progress. There may be progress in many areas but for me, I compared my mom’s tx in 1987 to my own tx in 2006. There isn’t a damn thing that is different. I invite anyone to take a peek at a blog entry I wrote on October 26th. The proof is in writing. My mom’s oncology notes from 1987……

    Let’s not even get started on the topic of the resentment that is slowly building by those afflicted with other types of cancer. Jody is right. Research in any area will trickle into every area. Breast cancer donations (stating opinion) surely MUST represent the lion’s share of money. And that lion’s share is to raise awareness.

    To this I say, the only awareness we need to raise is this:

    ARE YOU AWARE THERE IS NO CURE FOR (BREAST) CANCER?

    Great survival statistics that can be skewed to further an agenda are mere soundbites. It’s a disgrace. Decades later, billions spent and we are not much past square one.

    Research is the answer. Clinical studies to find out WHY is the answer. That is where we need to shift the “awareness” focus.

    I stand with you, my friend. And, I am trying my best to keep my big mouth moving…… In the short time that I entered this blog-world, I’ve learned a very important fact….

    I am aware that people are NOT aware. We need to get everyone on the same page. Researchers scattered all over the place is not helpful. Organizations fighting for donor dollars has turned into a war and we are the casualties of that war. Those of us who have stared down the barrel of the gun and those who deal with daily treatment hoping today brings the great breakthrough.

    I applaud organizations like the National Breast Cancer Coalition in setting a deadline. It’s time to get on the same page. Enough is truly enough.

    Hope is not a cure. We are not going to screen our way to a cure. I can’t take credit for the words of others. I will claim my own little blurb however….. “Survive and cure are NOT interchangeable words.”

    Love to you,
    AnneMarie

    Reply

  7. Lori
    Dec 08, 2011 @ 08:22:15

    Love the pushback, and I know exactly what those of you who suggest we ARE the movers & shakers are saying. However, I still respectfully disagree. Until we have influce over how the money is spent, we are not in a position of power. Until both Breast Cancer, Inc. and reserachers both include our voices universally, we still have work to do. Until we mobilize, we’re going to see a whole lot more of a ruse like this in the name of research: http://wp.me/p1ADsf-7Q

    Reply

  8. AnneMarie Ciccarella (@chemobrainfog)
    Dec 08, 2011 @ 09:22:20

    Lori…. I completely agree with you about the fact that we are NOT in a position of power…. I’m going to finish the sentence with the word “YET” …. and that’s why we must continue to move and shake…… As we make noise, our numbers should grow and when that begins to happen we WILL be able to shine the light on the waste of money that could and should be spent focusing on curing so no one is looking over their shoulder waiting for the next breast cancer tap, fixing collateral damage (my chemobrain, my friend’s frozen shoulder, neuropathy-the WHOLE list of garbage we deal with to live and that’s those of us who are not dealing with mets) and ultimately, prevention for the sake of the next generation. I have to believe we can make a difference by continuing to open our mouths among each other……. we are not a “brand” and until every woman is on board with The Truth and starts talking and doesn’t STOP, you are right. We are powerless. I dream big and like you, I am now backing my play with action….. I have to believe my daughter will not face what I had to face, what you continue to face and I never want to relive “you have cancer” from where my mom stood in that room while I was the one in the gown sitting on that table. I have to believe that we CAN come together as a group and then get the researchers on the same page or at least in the same damn book. Keep talking, I’ll keep listening and my immediate goal is to start approaching the NUMEROUS organizations in my area to try to raise “awareness” that we are throwing money out the window until we all start throwing things at the same wall. I KNOW about the lack of progress. It flat out sucks. I’m behind you, I’m with you and I agree with you…… I’m trying to go back to that old song and maybe get the ball rolling. “Divided We Fall” ….. I’m working on a catchy phrase because if “they” aren’t “with us” …… not only are they not part of the solution, “they” are exacerbating the problem with smoke and mirrors and illusions of crap buried in the sea of pink. Scattered thoughts…. but yes, you are right. The golden rule: The man with the gold rules. We don’t have the gold. YET. The best we can do is make the rest of the world aware. I like being the underdog in the Pink War. When the world realizes we are the underdogs, we will pick up steam. Everyone loves a Rocky story…. we have to be the Rocky of Breast Cancer. Ok…before I continue making NO sense to anyone but myself….. over and out…. I got work to do here!!!

    Reply

    • Lori
      Dec 08, 2011 @ 11:17:04

      I could not agree more! And I’m bound and determine to ensure our voices ring out as strong, if not stronger, than those who “have the gold” as you put it! I just held the “pinkresponsibly.wordpress.com” site…let’s together figure out how we can use it to get the message out. It’s only one vehicle, but we CAN make it snowball.

      XOXOX,
      Lori

      Reply

      • AnneMarie
        Dec 08, 2011 @ 16:58:32

        I’m with you….. I know a couple of the organizations here on Long Island stopped donating their fund raising dollars to organizations-set up their own non profits and seek out research projects or direct the funds to the community to help those in financial need.

        Pink Responsibly may be “only one vehicle.” Now it’s up to us to make it THE vehicle. I have a couple of ideas…… Let’s talk.

        xoxoxox
        AnneMarie

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