Turning Up The Volume


Metastatic breast cancer advocate goes to Washington DC to tell her own story and push for more research to be directed toward metastatic disease

Many of the people who know me best question why I attend and advocate at events that raise awareness and action for metastatic breast cancer. They know that an hours-long event can sometimes mean a day of recovery afterward and that anything longer almost guarantees a longer break before I am fully back in my life. It's not just physical. In fact, it's mostly mental and emotional recovery.

I'm in the midst of such a "recovery" right now after spending two days in Washington D.C. at Metavivor's iconic Stage IV Stampede. I went as myself, a woman with metastatic breast cancer, and was honored to also represent Living Beyond Breast Cancer (lbbc.org), which is a Legislative Advocacy Partner of Metavivor (metavivor.org).

The annual Stage IV Stampede, which is in its third year, brings together patients and other advocates from across the United States, provides a brief but detailed lesson on effective advocacy and sets us all loose on the Capitol in scheduled (and some unscheduled) meetings with our members of Congress or their health legislation advisors.

This recovery period, which is stretching into three days, is worth it. I wrote earlier this month about my personal decision-making rules when confronted with a breast-cancer fundraising product. Step one is the most important to me: More research funding is needed, and the majority of that funding comes from the federal government.

I believe this wholeheartedly. At the Stage IV Stampede, I was given the opportunity to do more than call my representatives. I could step into their offices to tell my own story, explain why research funding matters so much that I'd travel across the country to be a part of this action, and ask for their support of our goals. I've never felt so empowered.

The legislative focus of the Stampede fell directly into my personal bucket of concerns: increase research funds dedicated to metastatic breast cancer and its treatment, encourage support of the Metastatic Breast Cancer Access to Care legislation and other patient protections and educate about the lives and concerns of people living with metastatic breast cancer.

There were many highlights of the two-day event, seeing friends I know from LBBC's annual metastatic breast cancer conference, meeting many new people, hearing firsthand from my own senator's health policy director that he will continue to push for increased levels of cancer funding. There was also the short march to Capitol Hill for a die-in organized by MetUp (metup.org). I've participated in die-ins before, where the idea is to bring public awareness about the significant loss of life (more than 41,000 US women and men every year) due to metastatic breast cancer. These are emotionally difficult events that remind me of friends and colleagues in New York who died from AIDS in the late 1980s; reminders that are amplified by newer losses of friends with metastatic breast cancer.

Yet, if I had to choose just one thing that hit home and will impact my actions going forward, it would be this statement by a Metavivor presenter during training: The way to "increase the size of the slice of the research pie going to metastatic breast cancer is to increase the size of the pie." This idea, that we need to increase research dollars for all metastatic cancers, is important. It can be all too easy to feel that "I" have it worst of all, yet we know that people with lung cancer or skin cancer or ovarian cancer or any cancer also need bigger slices of the pie. We must focus on increasing the size of the pie. With breast cancer research, only somewhere south of 7 percent of research funding (estimates go as low as 2 percent) goes toward treatments and understanding of already-metastasized breast cancer even though we know that 20 to 30 percent of early-stage breast cancer patients go on to have metastasis and 6 to 10 percent are diagnosed with metastasis from the start. I can't speak to other cancers, but experience tells me it is likely similar in many cases. Metastasized cancer is more difficult to understand and to treat; there are many unanswered questions for patients, oncologists, and researchers.

You don't have to go to Washington to have your voice heard. Metavivor has a legislative action plan http://www.metavivor.org/take-action/campaigns/legislative-advocacy-plan/ that is a good place to start for organizing your thoughts. Finding your Senators and Representatives is a straightforward internet search, and from there you can write or call to urge action. If you call, ask to speak with the person who handles health care issues.

Not everyone with metastatic cancer lives long enough to voice the need for research and action. I have, and I don't intend to waste my chance to speak out.

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