On October 10th, 2011 METAvivor Research and Support launched its 30% for 30% Campaign in a concerted effort to improve longevity and quality of life for persons with metastatic breast cancer (MBC). The concept is simple:
Since thirty percent of all breast cancer patients develop MBC — a fatal condition, then 30% of breast cancer research funds and 30% of breast cancer support activities should be dedicated to metastatic breast cancer. At present, only 2% of breast cancer research funds go toward MBC research and support for the disease is rare.
“People do not realize that metastatic breast cancer is widespread and deadly, and that it strikes on whim and takes 41,000 American lives every year. Survivors think they are safe because they are 5 years out … or were diagnosed early … or were told they are ‘cured’, but MBC plays by its own rules.” says METAvivor President, CJ (Dian) Corneliussen-James. “People diagnosed at stage 0 as well as 30-year survivors can and do metastasize. You feel great one day and the next day learn you have MBC. Your life can change that fast.”
METAvivor has led the way in showing what can be done at the grassroots level. An all volunteer, non-profit organization, METAvivor was founded and is run largely by persons with MBC. Established in 2007 as a local (Annapolis MD) support program, the group began a fundraising campaign in 2008, became a non-profit organization in 2009, began awarding its own annual MBC research grants in 2010 and in 2011 began advocating 30% for 30%. In 2012, METAvivor will, is launching its 30% for 30% campaign to ensure research nd support for metastatic breast cancer are commensurate with the prevalence of disease.
This is one of the best written ideas for how to deal with research and MBC (Metastatic Breast Cancer). It was written by C.J. (Dian) M. Corneliussen-Jameson on June 1, 2011 in Solutions, a source of independent coverage for health policy issues in Colorado and the Rocky Mountain West and is what started the concept of 30 by 30.
30% for 30%
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.
Cancer Transitions: Related stories
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
C.J. (Dian) M. Corneliussen-James is president of METAvivor Research and Support Inc., a nonprofit organization advocating for metastatic breast cancer research in Anapolis, MD.