Whenever I set about writing a blog post, I have in mind that I will try to be as objective as possible, particularly if I am discussing a subject that I know to be contentious. The trouble is, it's getting harder and harder for me to be fully objective when I am discussing issues related to breast cancer fundraising and research. After all, as a person living with Stage IV breast cancer, research is tantamount to my hopes for recovery and a long life.
Today's post is a prime example. Recently a reader sent me a link to a televised interview between Tavis Smiley of PBS and Nancy Brinker, the CEO and founder of Susan G. Komen for the Cure®. The interview aired on October 1, 2010 to mark the start of Breast Cancer Awareness month, and to promote the launch of Brinker's book, Promise Me: How a Sister's Love Launched the Global Movement to End Breast Cancer.
Click here for a link to the interview and a full transcript.
I started watching the full 13-minute interview with an open mind. But as I continued to watch the interplay between Brinker and Smiley it dawned on me that my goal of remaining objective was going to be an impossible task. I run my fingers through my newly short hairdo and am reminded that soon there will be no hair to run my fingers through. As I write down notes during the interview, I realize how difficult it is becoming for me to write with a pen. Tumors are now pressing on vital nerves, and my writing arm is rapidly losing strength, and certain fingers are numb. Writing by hand has become a laborious task with the end result looking like something akin to chicken scratchings. In addition, I'm so tired from my new chemotherapy regimen that concentrating for any length of time seems a monumental feat. Finding the energy to blog is getting harder. I'm sure chemo-brain is becoming a factor as well as I struggle to find and, indeed, spell common words as I construct my sentences. Yes, objectivity was being replaced with the difficult realities of metastatic breast cancer and treatment.
But I persevered with the interview, waiting for Nancy Brinker to say something that might give me hope. I watched with anticipation even thinking that her words might convince me that Komen's activities are beyond reproach. Have I been wrong in questioning the activities of the Komen organization? Then I had one of those "ah-ha" moments that Oprah always talks about. I was watching and listening to this interview with the eyes and ears of a woman living with metastatic breast cancer. I was already angry when I started watching the interview. I wanted to know: Where is my cure? When is my cure? I'm sick, and I don't have time to waste. Where is all that money going? I watched, I listened and I waited. Would my anger transform when I got the answers I needed?
Unfortunately, this is what I heard. That the public can't handle the unattractive truth about breast cancer. That the only way to raise money for the cause is through feel-good experiences and products. That people shouldn't think about dying from this disease. That 5-year survival rates for early breast cancer are the only statistics that matter. That metastatic breast cancer is still unmentionable and a lost cause financially. That more of Komen's money is going to research than is actually the case.
And so it went, and with each passing minute the angrier I became. There were many points that I wanted to take issue with to present a fair and balanced discussion. As the interviewer and in the interests of responsible journalism, Smiley should have dug deeper. He didn't, and instead this interview sounded to me like a paid advertorial for the Komen organization.
Here are my thoughts.
(Minute 1.34) Nancy Brinker ("NB"): "....[I] realized the only way to deliver really conventional messages about breast cancer was through products and things people were doing that they weren't afraid of and enjoying what they were doing."
Pink Boob Awards Gallery give anyone useful information about breast cancer? Does the Hope Gun and other products featured in my Selling Hope post do the job of connecting the public with the realities of breast cancer? What do any of these products have to do with "conventional messages about breast cancer?"
I think what NB really meant to say was that products are the only way to attract corporate sponsors interested in cheap advertising, and a way to tap into the emotional psyche' of a consumer population that wants to "do good". Komen's approach is the perfect marriage of altruistic appearances and a corporation's inherent motivation to sell products that generate profits and banner-worthy public relations opportunities.
My disease has become a marketable commodity and nothing more. The sad irony in all of this is that I believe Komen's approach to cause-marketing has only served to undermine the seriousness of this disease in the public's perception. With products like those depicted in my gallery, pink guns and ridiculous novelty items, breast cancer the disease is becoming a laughing-stock. The public is being conned out of their hard-earned money with no end to the consumrist circus in sight. Meanwhile I sit here with my hopes for recovery; no better than they were when Susan G. Komen herself was fighting the disease all those years ago.
SMILE, CELEBRATE, PRETEND.....
(Minute 2.06) NB: "Also, the Race for the Cure and the other events that we have because our job is to celebrate hope and to give people a vision for the future, not to depress them all the time and say, you know, you're gonna die from this."
This one really gets me. Celebrate hope? What hope is she talking about? The hope that CJ" (Dian) Corneliussen-James, president of METAvivor Research and Support, Inc, wrote about in her guest post on this blog entitled "Trying to Stay Alive on Two Percent"? Less than 2% of all cancer fundraising is allocated to metastatic cancer research, of which breast cancer is a subset. There is nothing in that statistic that gives me a reason to celebrate hope or gives me a vision for the future. In fact, this data tells me that I have every reason to be pessimistic, not optimistic. What "vision" is there for people with Stage IV when their prognoses are grim, their treatments are grueling, debilitating and generally temporary in success. Yet their self-proclaimed leader of advocacy implies a "don't worry, be happy" attitude. Easy for you to say NB with your "celebrations of hope" and "visions for the future."
How nice that NB wants to protect us all by not talking about the depressing, yes depressing, fact that 40,000 women each year in the U.S. and hundreds of men are still dying from this disease. Depressing? You bet. Truth? Absolute. Read the National Breast Cancer's Coalition 2020 White Paper for more sobering realities on how little progress we have made in the fight to end this disease.
Nothing to celebrate there either. Perhaps it's time for Komen to recalibrate the message?
FROM ABSENT TO ATTRACTIVE
(Minute 4.20) In discussing why breast cancer wasn't talked about in the past...
NB: Because it wasn't considered attractive or it wasn't considered the thing to do, to talk about cancer out loud.
I find NB's use of the word "attractive" in this sentence to be an interesting choice. Does she imply that through the work of her organization, breast cancer is now considered "attractive". Certainly, this is precisely the issue raised in a recent essay by a writer's collective that I featured on this blog, entitled Miss Pink Elegance. Yes, we speak about breast cancer now, but the culture seems to be largely constructed around pink ribbons and images of pink pleasantry and beauty. Ironically, predominant breast cancer culture is still not really about the disease itself.
There is still nothing attractive about breast cancer.
Unless you subscribe to Komen's vision for breast cancer which is illustrated by a recent race advertisement on the left. This is the image of breast cancer that the public is being sold.
Thanks to Komen, breast cancer (the cause) is now attractive. This is supposed to quell my anger? Hiding the truth and prettying it up with makeup, smiles and fashion? No. I'm no less angry.
MISDIRECTING THE PUBLIC
(Minute 4.33) NB: "You know, the five-year survival rate for very early breast cancer in those days was 74 percent. Today, if everything's done right, it's almost 98 percent."
(Minute 10.30) "..[w]e can conquer early breast cancer"
I've heard this 98 percent statistic quoted many times. The problem with this statistic is that it's often quoted out of context and overused. Look at survival rates. For which group does the 98 percent survival rate apply? Not Stage IV. Not Stage III. Not even Stage II. Check out the American Cancer Society's statistics. Increase stage: Decrease survival. By focusing on a five-year statistic that only applies to a small subset of the diagnosed, NB contributes to the misconception that breast cancer is a completely survivable disease.
This disservice to the diagnosed doesn't address existing controversy about diagnosing and treating pre-cancerous (Stage 0) conditions; conditions that may never evolve into anything life-threatening. Are these types of conditions included in this statistic thus skewing the survival rates? At the same time the 98% statistic and the statement that "we can conquer early breast cancer" doesn't speak to the fact that treating an early stage breast cancer is no guarantee that metastasis won't ever occur. They do. And sometimes they do many years after an original diagnosis.
NB does not quote survival rates for advanced stage and metastatic disease. Why? Because the picture isn't as rosy or "attractive".
THE ECONOMICS OF LATE-STAGE CANCER
(Minute 6.56) Discussing the increasing incidence of cancer.....
NB: "There's one thing we know. We can't afford - and no one in the world can afford - to treat all the late-stage cancer."
This is the closest NB gets to talking about metastatic breast cancer. In fact the word "metastatic" is never used in the entire interview. It is simply alluded to as "advanced" or "late stage". Does this statement imply that the issue of metastatic breast cancer is not one that Komen wants to address?
I certainly hope not. Komen has recently appointed Danny Welch PhD, an expert in metastatic cancer, to their Scientific Advisory Council. Let's hope that in light of the above statement by NB, that his appointment is not simply a token gesture and that Komen can afford to fund meaningful and productive research in this area.
Since Komen spent 41% of its 2009 budget on education and only 21% on research, it's no wonder NB doesn't think anyone in the world can afford to treat it.
But lives depend on it, mine included.
WHERE THE MONEY GOES
(Minute 11.19) NB: Well, we have affiliates in 120 cities throughout America and their single task is to make sure they do needs assessment in their community. They fund treatment, screening and education programs in their communities basically focused at low-resource people. With the 25 percent that returns to the national foundation, that's where we fund the cutting edge research.
So if you look at our resources as a pie, basically a little less than half of our money goes to cutting edge research, prevention, causation, etc. The rest of it goes for community outreaching care across all cultures.
Anger rises. I actually did look at Komen's "resources as a pie" and I analyzed how Komen spends its valued resources. (Refer to my three-part "Komen by the Numbers" series of blog posts for more in-depth discussion on Komen's financials).
First of all, Komen spends a LOT less than half of its revenues to fund research. In 2009 the "pie" looked like this. 21% of Net Public Support and Other Revenue went to fund research. That's not even close to the "little less than half" that NB quotes above.
How can an organization that spends less than a quarter of its financial resources on Research be "for the Cure"? It's a question that I continue to ask.
CURES OUTSIDE THE LABORATORY?
(Minute 11.40) NB: "No other breast cancer organization has this broad of mission because we don't believe you can cure a disease in the laboratory alone."
I don't understand this statement at all. If you can't cure a disease in the laboratory, then how can you cure it? Haven't all the major medical cures come out of a laboratory? Does NB know something that the rest of us don't? Based on Komen's resource allocations, it seems that she believes that screening, treatment, and education can result in cures! Is this Komen's justification for not making research a priority in its funding allocations? Well, yes, that's exactly right. See my post, "Komen By the Numbers" for a discussion on how Komen apparently defines the word "cure".
I've said this before and I'll say it again; screening, treatment and education will never result in a cure for my cancer, or any other late stage cancer. Game-changing research, the kind that is generally done in a laboratory, is the only hope that I have that my cancer will be cured.
But if I'm wrong on this, and there's a way to cure my cancer outside of a laboratory, please Komen, I beg of you to let me know soon.
In the meantime I'm still angry, and for good reasons.