Thursday, October 13, 2011

"Peaking" Behind the Pink Curtain


Today, October 13, I just recently found out, is METASTATIC BREAST CANCER AWARENESS DAY. Who knew? And, more importantly, why didn't we know?

The entire month of October is "Breast Cancer Awareness" month, and the killer form of breast cancer gets only one day out of 31. 1% of the attention. Unfortunately, that is the reality and history of breast cancer research and awareness.

No one wants to talk about the actual death rates behind the pink curtain.

It boggles my mind that as the runners race for the cure; walkers do their 3-day walk; drinkers down their Pink Hard Lemonade; fashionistas don their pink pins, bracelets, baseball caps, t-shirts; foodies eat their Kentucky Fried [pink packaged] Chicken; and Susan G. Komen markets their carcinogenic PROMISE ME perfume, that only a small percentage of concerned, well-meaning people ask the question: where does my contributing money really go, and how is it spent?

Susan G. Komen only spent approximately 20% of their raised funds on (early stage) research in 2010, despite raising over $310 million (although $22 million went to salaries).

And... Despite the platitudes to the contrary, it certainly does not go toward reducing...eliminating (?)... the deaths from metastatic breast cancer. Despite the moniker that, early detection saves lives...(the falacy of which is becoming more apparent)  the $$$ do not go toward solving the medical mystery of what causes breast cancer, and what then causes it to metastasize? And only 2% goes toward research on that form of breast cancer that causes the death of 40,000 women each year in the U.S.

Because of these life-impacting inequities, METAvivor, a non-profit organization devoted solely to raising funds for metastatic breast cancer research, as well as awareness of this deadly disease, was developed and conceived. Below is a repost of an OpEd written by the president of METAvivor, C.J. (Dian) M. Corneliussen-James, this past summer. I strongly encourage you to read this enlightening OpEd, and then go and check out 

~ TC

Opinion: 30 percent for 30 percent

Opinion: 30 percent for 30 percentBy C.J. (Dian) M. Corneliussen-James

The most devastating and feared breast cancer is metastatic (stage IV) breast cancer. This occurs when breast cancer spreads to distant, non-adjacent parts of the body. It strikes 30 percent of breast cancer patients and is fatal, taking lives on average within two to four years of diagnosis.

Clearly, ending death from metastatic breast cancer (MBC) is of critical importance not only to those living with it, but also to anyone who has had, or may at some point develop breast cancer.

Unfortunately, research for MBC is vastly underfunded. Indeed, research for all metastasized cancers is collectively funded at only 2 percent, and MBC is a subset of that group.(A recent quote of 5 percent in regard to metastatic cancer research came from averaging U.S., Canadian and European research portfolios. All statistics and information in this paper pertain solely to the U.S.)

So where does most of the money go? It goes predominantly into prevention and early detection. If one looks at the funding distribution pie charts of various organizations, these two categories are inevitably included. What is not immediately apparent is that much of the funding designated for other categories, such as biology and etiology, is also spent on issues pertaining to prevention and early detection. By comparison, MBC research is so poorly funded that it rarely even appears on a pie chart.

The preoccupation with prevention and early detection has continued since at least 1998 when the National Cancer Institute set these two issues as the national breast cancer focus. Reaffirmed in 2004, the policy has not changed — neither has the fact that each year roughly 195,000 Americans continue to be diagnosed with breast cancer, that 30 percent of these patients continue to metastasize, and that 41,000 continue to die each year.

While one cannot dispute that prevention and early detection are worthy causes, one can indeed question the inequity in the distribution of funds. Further, one can certainly ask how long we plan to direct the preponderance of research in this same direction, especially in light of what has, or better said has not been achieved.

Why are other organizations not funding stage IV research? Here are my thoughts:

1. Image and Turn-Around: Grant-givers prefer projects of short duration with a relative certainty of success. That is good for the image and encourages future donations. Mets research is enormously complex and the best chances for significant improvement tend to be out of the box ideas. Such research takes longer to accomplish and the predictability of success is shaky.

2. They are Getting Away with It. Cancer organizations have used token advances to claim they are making great strides forward with metastatic cancer. The advances they speak of are rare and normally involve extending life at best for several weeks or months, but this is not made public. Even those who know the truth keep giving, including some of those dying of the disease. They are caught up by the glamour, the big names and the enticing events. There is no need to take the difficult road.

3. Money .. Money .. Money. Metastatic cancer research is enormously expensive, especially if sufficient models (animal or otherwise), which are critical to much of the research, are to be developed.  [This block quote was copied from an earlier post by CJ and  inserted here by the blogger, TC...exploiting her creative license]

Quite a few scientists say privately that prevention in the foreseeable future is unrealistic because among other things, we do not even know what causes breast cancer and thus have nothing specific against which to target our efforts. Likewise, early detection has failed to effectively reduce death because some patients have metastatic cells prior to developing a detectable breast cancer. And thus even stage 0 patients can and do metastasize.

Research for other aspects of breast cancer is certainly being done, but on a diminishing scale. At the bottom of the scale is MBC — the only breast cancer that kills.

In response to a small but nevertheless persistent outcry that not nearly enough is being done, we have recently seen one or two promises to address the issue of MBC. Yet in reading the fine print we see that what is being discussed is research to prevent breast cancer from metastasizing — not research focused on interceding after the cancer has spread.

Is there a difference? You bet. Although any cancer research can at times yield new information relevant to another area of research, significant progress usually occurs only when research is directly focused on the problem at hand.

Metastatic cancer exists in a different realm than non-metastatic cancer. Thus MBC is far more apt to benefit from research undertaken for another metastatic cancer than it is from research involving non-metastatic breast cancer. Unfortunately, since the entire field of metastatic cancer is funded at only 2 percent, there is limited related research to draw upon.

So just what is the reluctance to sufficiently fund metastatic cancer research?

Historically, metastatic cancer has been considered too complex an issue to tackle with any reasonable expectation of success. Yet times, and the state of science have changed.

According to Danny R. Welch, Ph.D., renowned career metastasis researcher and past president of the Metastasis Research Society, “Within 10 years, suffering from and potentially death from metastatic breast cancer could be reduced significantly if the research were fully funded.” There are now many dedicated career metastasis researchers, who have the education, the experience, the skills. the ideas, the proposals and the scientific insights to make a difference. What they lack is the funding.

I could make the argument that MBC research, and not prevention and early detection, should be the premier focus for breast cancer research. Clearly those with MBC have the most urgent need for research because it is their lives, and only their lives, that are imminently at risk. Equally important is the fact that ending death from MBC is the only means to simultaneously bring peace of mind and the promise of longevity not only to all stages of breast cancer patients but also to a general public that worries about being diagnosed. By contrast, prevention and early detection are relevant only to the undiagnosed. Once a person becomes a patient, these issues are of no further value.

Yes, I could make my argument, but I am unlikely to win. Thus instead, I advocate for what I think is both fair and achievable – 30 percent for 30 percent. Thirty percent of all breast cancer patients metastasize and die. Thus 30 percent of all breast cancer research funds should be dedicated to MBC research — exclusive of research to prevent metastasis, which pertains to the non-metastatic patient and thus belongs in the domain of non-metastatic research.

If we could achieve 30 percent for 30 percent, we would save countless lives.



  1. I found your blog through the "being cancer" blog I have stage 3C bc--I want you to know I agree with everything you posted here--I have been trying to get the word out there about the amount of money some of these so called "non-profit" organizations are making and pocketing--I had this exact conversation with a friend yesterday--why do people give not knowing where the money is actually going? I have found that the American Cancer Society is the only NP organization the fully gives 100% of proceeds to cancer research and programs for survivors and caregivers. I will continue to follow your blog thanks

  2. Monya ~ Thank your for reading, and commenting. It is good to know that I am not the only one thinking and wondering about all of the marketing of misinformation out there. Greed fueling profit at the expense of 40,000 women each year should raise a few eyebrows. But sadly...

    Thanks for commenting!


  3. TC, I am simply appalled by the lack of attention and funds for mets. I just don't understand the logic of awareness campaigns and others that practically ignore the deadly aspect of this disease. That has to change. Thanks for writing this and helping to bring about that change.