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After Ovarian Cancer, I Made Advocacy My Life's Work

April 29th, 2016 |
Awareness & Education

by nakedmtn | Survivor: Ovarian Cancer    Connect

Marcia was a federal lobbyist for 25 and understood the importance of politics and policies as much as hope and positivity while undergoing the difficult personal cancer battle.

The first week of March was Spring Advocacy Day for the teal ribbons of the rainbow cancer wheel. The Ovarian Cancer Research Fund Alliance (OCRFA), the the largest global organization dedicated to advancing ovarian cancer research, joined together survivors with caregivers and supporters hand-in-hand to deliver our message to Washington. This was the first time I had participated, but I was excited to address my Congressional representatives directly about policies that impact me and the countless other women who have been, or will be, diagnosed with ovarian cancer during their lifetime.

I fell into the "survivor" category of attendees as a seven and a half year survivor of Stage IIIC. I was both humbled and energized by the 60 other women who had come from all over the United States to connectively form one voice about the struggles we face and persuade our Senators and Representatives to support certain vital policy measures.

There were two primary measures we were there to advocate for, which everyone should be made aware of: one, increased funding for the National Institutes of Health, especially the National Cancer Institute; two, enacting the "Cancer Drug Coverage Parity Act." This bill requires companies with health insurance plans regulated under ERISA (or the federal government as opposed to state law) to cover oral chemotherapy the way they cover IV or intra-peritoneal chemotherapy. Currently, these insurance plans and those in the ten states that have not yet adopted parity laws do not cover oral chemotherapy under the drug portion of the plan, which requires high out-of-pocket costs for cancer patients. That’s something worth speaking up for, right?

Altogether, our advocacy army had seven different "asks" to discuss with members of Congress, four of them specific to ovarian cancer. The OCRFA team had a well-honed approach to educating me and everyone else in the same boat how, exactly, to express our earnest determination to help ovarian cancer sufferers. They held a half-day training session, kicked off with a delicious healthy lunch that provided plenty of networking opportunities for the participants.

We were divided by tables according to home state, and each table was assigned their very own experienced advocate to show us the ropes. In our group there was one survivor (me), a daughter who had lost her mother to ovarian cancer, a sister whose older sibling has been battling Stage IV ovarian cancer since 2011, and a staff member at OCRFA who frequently answers the phone and listens to the fright, bewilderment and sometimes the anger of newly diagnosed women.

I thought that as the fighter and then survivor of ovarian cancer that I had seen its deepest, ugliest depths. But each of these women presented to me a facet of the cancer experience I had never seen before--at least, not quite as intimately as they described. It helped me really see the extensive web of the cancer network, the ways each cancer cell inside one person’s body leach out and affect the bodies of everyone who loves them. We were in Washington to do something important, to try and make a difference.

OCRFA's legislative staff clearly laid out each policy issue we were about to speak on. Then came the role-playing sessions. The experienced advocate took turns playing the legislative assistants we would mostly likely encounter. This was just the warm-up--some of us would be meeting with the Senator or Representative themselves.

Then it was the big day. Sixty-one women climbed aboard a bus that took us from our downtown meeting place to Capitol Hill. My state group, now an intimately tied platoon, met with legislative staff in five offices, including one Representative herself: Rep. Barbara Comstock, R-VA-10. Each woman modestly stepped forward to tell her story. When it got to me, I spoke clearly with purpose and passion.

Across the board, the meetings in each of these congressional offices were emotional, particularly for those who had recently lost loved ones. But it was also inspiring. There were a number of women who were in the midst of their third, even fourth round of chemotherapy… yet there they were, stumping Congress for this worthy cause. It was something that crossed beyond partisan lines and reminded everyone of their common humanity. The determination and courage witnessed that day was truly inspiring.

Personally, I felt that the whole experience was very positive. It felt good to be doing something specific that could really help. I know a lot of cancer organizations do this kind of advocacy work. Much of it can be done right at home on the computer by sending an email or a tweet to Members of Congress. My advice: take advantage of these opportunities whenever you can--it will lift your spirit.

Have you ever participated in cancer advocacy, or benefited from it? Tell us in the comments below!

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nakedmtn's picture
Marcia Mabee Bell is an ovarian cancer survivor who has written a memoir that details her cancer diagnosis and treatment, as well as her husband’s pancreatic cancer experience. Naked Mountain, A Memoir will be published by She Writes Press on September 6, 2016 and can be pre-ordered now on Amazon.com. Marcia also writes a blog about the natural world, as well as cancer and grief recovery: NakedMountain.net . You can find her on IHadCancer under the username nakedmtn.