well, here’s another hashtag in our #breastcancer life to pay attention to – quite literally. $100 for every use of the #moreformbc hashtag from Lily pharmaceuticals.
My feeling that our metastatic breast cancer community might agree to a using a few standard hashtags to bring our voices together. We should sound stronger and united in our tweets, blogs, Instagram feeds, and all the rest of social media so that the pharmaceutical, oncology, medical, and research and development communities become aware of us and see we are facing the same challenges no matter where we live, and no matter how different we look outside.
Who takes the reigns of this crazy animal and tames it will do us all a good turn. Maybe Dr. Susan Love? Maybe the Mayo Clinic? Maybe the foundations? We have two conferences during which how we, the global metastatic communities use the same general taxonomy and language standardization as a topic of discussion.
How does one sound the alarm? If we look at the AIDS vaccination as well as the lives people live with AIDS instead of a death sentence being handed down when one is diagnosed as a standard model – meaning a single strong voice and a singular push towards a cure – we have a better chance of getting there. As our lives are not counted after five years of living with MBC currently, we can’t truly understand and track how our long our brothers and sisters are surviving – and thriving – yet our diagnosis is still a death sentence. No more than 7% of all research dollars (some say 6%) are dedicated to metastatic breast cancer perhaps hearing our voices together rather than as fragmented whispers from corners of the web what a wonderful way to drive understanding of our cause and our struggles to remain alone and alive as our bodies try to kill us.
Any thoughts? It frustrates me beyond belief that we can’t have the few vocal people out of the 155,000 of us to focus our energies and get noticed…while we are still alive.