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MBCN News

Making a Difference for People with MBC: We’re Counting on YOU

 

Thanks are overdue to all who have supported  the Change.org petition calling for our cancer databases to start counting all people with metastatic breast cancer.

 

As the petition explains, our population-based cancer registries (e.g., SEER, CDC Division of Cancer Prevention and Control, NAACCR, state and local cancer registries) currently do not count metastatic recurrences—which is how most patients join the MBC ranks.  In 2016, we only have first diagnosis, initial treatment and mortality information. We need accurate MBC statistics!

 

The petition resonated with people–we are close to 7,000 signatures. The comments accompanying these signatures are moving—I’ve shared many via Twitter and it was wonderful how many fellow MBC patients retweeted them. THANK YOU!

 

We are finalizing our next step for this petition—we will showcase it at LBBC’s April 28-30 MBC conference, and hopefully several other MBC-centric events, so please stay tuned.

 

This petition was truly a collaborative effort among the members of the Metastatic Breast Cancer Alliance. As some of you may know, I co-chair the MBCA Public Awareness Committee with LBBC’s Cathy Ormerod. (Each committee has at least one MBC patient on it.)

 

I believe it was Cathy who proposed the petition. I volunteered to draft it—prior to my MBC diagnosis in 2009, I spent more than 20 years as the editor-in-chief of various trade magazines. It felt good to put my professional skills to use in service of a cause that means so much to me personally. I also felt it was important that a patient write the petition. I am not a PR person or a marketing professional–I am living with Stage IV breast cancer. This is my reality.

 

Other Alliance members then reviewed my draft—experts in breast cancer, epidemiology, statistics and how the NCI works. I think I did at least 15 revisions—and I was happy to do them, just as I am proud to volunteer my time with MBCN and many other patient advocate activities.  (Here is a video I did for the awesome MBC Project.)

 

The Change.org petition fulfills a seven-year quest. It was a few months after my Stage IV diagnosis and I knew I wanted to do SOMETHING to make a difference for people living with MBC. Fortunately, I met Musa Mayer in 2009. Musa is an experienced and dedicated patient advocate–and she’s also a member of the Metastatic Breast Cancer Alliance. I knew I could not do everything—and, statistically I might only have a short time to do anything at all. So that was the question I put to Musa: Where could I have the greatest impact as a voice for patients?

 

Musa told me to educate myself—and suggested attending Project Lead would be a good starting point. She said one of the most meaningful things I could do was to work to change how SEER and other national cancer databases count people with MBC.

 

Musa said when we don’t count people we can’t provide for them—it’s as if people with MBC are invisible. She explained the issue to me—just as it is now spelled out in the Alliance petition.

 

I always remembered what Musa said about SEER and counting people with MBC. I did attend Project Lead.  I wrote about changing our population-based cancer registries to count people with metastatic recurrences on my personal blog. But it was a just a couple posts with a limited reach.

 

I know that our work is far from over. The Change.org petition is a great starting point. Many people weren’t aware that we lack accurate MBC statistics or what would be required to obtain them. Last week, I was amazed to become Facebook friends with a newly diagnosed Stage IV patient and to see my own face staring back from her page. She had shared the petition and many of her friends and family had signed it.

 

Working with the MBC Alliance, I have reached thousands of people—in my community and around the world. I could not have done this on my own. It is just as the MBC Alliance tagline says: Together we are stronger than the disease.

 

If you signed and shared the Change.org petition, thank you! If you haven’t, there’s still time. You’ll find it here.