Unlike many diseases, myeloma is not just a rare cancer but it is also a cancer where the experts have divergent views. For many of us, this factor alone creates lots of anxiety when diagnosed. Not only have we not heard of the disease, but we also learn our doctors do not have definite answers for how to proceed. We find ourselves seeking out multiple voices and resources to learn not just about what the disease is, but also what therapy we should select. We become stakeholders in the process. Patient advocacy is one way we do so. We may not always agree, but we respect each other’s educated views, and are unafraid to debate them rigorously. From this we all learn. Maybe this is why we have such a visceral response to censorship, and to those who try to manage the message.
The International Myeloma Foundation (IMF) is a non-profit organization dedicated to the education, research, and treatment of multiple myeloma. It was founded in 1990 by Brian and Susie Novis, along with hematologist/oncologist Dr. Brian G.M. Durie, directly following Brian Novis’ myeloma diagnosis at the age of 33. Kathy Giusti saw a need to bring together researchers and industry to prioritize clinical research and drive the pipeline for new & effective therapies, so she initiated the MMRF.
All of these patient advocates have one thing in common, they understood the need to share and empower those who were diagnosed with myeloma so as to derive the best possible care. More importantly they felt the need to become part of the solution. Which brings us to the focus of this post. As patients there is no group for whom it matters more, and so editing out critical information is detrimental to the overall goal of educating as many patients as possible to save lives.
When we are confronted with an illness many feel is incurable and life ending, it feels like the future has been snatched away from us and not by personal choice. Such that when those who have far less urgency seek to take away our voice, we push back on any censorship to control communication from the true stakeholders in all of the research, data and choices that are being made daily to ensure that we not only survive but thrive with myeloma. The internet, advocate web sites, IMF, and MMRF allow the advocate forums to provide their frank, independent, educated, and uncensored contributions to the myeloma patient survival effort.
Working together “WE WILL SAVE LIFE”!