From awareness to action, from ribbons to research

It’s time, I think, to move from awareness to action, from ribbons to research, and to share what we’re learning with the rest of the world.  The #cancerrebels and pink protesters I’ve linked to in the past and new blogs I find every day are standing up for what we believe in, and I’d like to ask you to stand with us.

I’ve heard you asking why the research allocations are so off (30% of breast cancer cases progress to metastatic breast cancer, which only receives 3% of the research funds in the U.S.), and how we let it get this way.  No one knows for sure, of course, but I’m convinced that a big part of it is that it’s easy to overlook metastatic breast cancer survivors.

Even the name is a misnomer.  No one actually survives metastatic breast cancer.  Every single one of us with metastatic breast cancer will die of metastatic breast cancer, unless we’re hit by a car (or some other such accident) on the way to chemo (for example).  Many of us are not as active as we used to be; we suffer from pain, aches, nausea and fatigue, and we spend our “free time” at treatment or sleeping it off.  We prioritize our time with friends, but still we may retreat from social situations since we tire easily and unpredictably.  We spend our time with our families, squeezing out one more good memory, one more moment of happiness with our children, our spouse, our partner.  Many of us are additionally exhausted from treatment combined with work, by choice or by necessity, especially for the large number of us who must work to maintain access to our health insurance, a terrible twist for those without partners with health insurance or another solution.  Many are also caregivers for parents, teens, or very young children, and the time for advocacy slips through our fingers.

But most of all, the metastatic cancer movement has been stimeyed by the truth:  most patients diagnosed first with metastatic breast cancer die within 3 years, a number that has not changed in the last 20 years.  The 30% who have another cancer first that progresses to metastatic cancer may live longer (or shorter), but they are weary from the fight, and many have not felt welcome in the “pink” communities that shout HOPE from the rooftops.

Hope is lovely, of course, but in breast cancer circles, hope seems to mean hope for a cure (which is not likely to come for metastatic patients without more research) or hope that the cancer does not return — making the individual then a patient with metastatic breast cancer — this disease that has no cure and is always fatal.

It is hard to volunteer tirelessly for an organization that preaches HOPE that its members not become like you.

But today I want to introduce to you 1) the National Breast Cancer Coalition, the organization of organizations that helped teach the #cancerrebels these facts earlier this year, 2) Metastatic Breast Cancer Network, which is holding its FREE  annual meeting on “Empowerment through Education” TOMORROW in Baltimore (it may not be too late to attend!), and 3) METAvivors, a grass-roots group that has formed around the need for ACTION.  Now.

The METAvivors are a group of women from Annapolis working to create change, to increase not just awareness but research.  The group helps groups across the U.S. form their own local support groups for metastatic breast cancer survivors, spreads awareness of facts such as the ones I discussed above, and has recently formed their own nonprofit foundation to support a level of research commensurate with the number of patients that are diagnosed each year with metastatic breast cancer.  Starting in 2010, the METAvivors now fund promising metastatic research grants out of donations alone.  They are staffed by volunteers and support designation of donations for research — include that word on your check or with your donation and 100% of the funds received will be distributed to the competitively selected research grants.

On October 11, METAvivors.org announced their 30% for 30% campaign to ensure that research and support for metastatic breast cancer are commensurate with the prevalence of disease.  I’m eagerly awaiting new details, but this is an organization I can really get behind.

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