Throughout the month of September, blood cancer awareness activities and events have been going on around the world. Just days ago on 9/22, we observed the “Super Bowl” of awareness for the Chronic Myeloid Leukemia (CML) community with World CML Day. The collective hope is that someone, somewhere, would learn more about CML and better understand the plight of those living with the disease. Perhaps through their newfound awareness; they would use their influence among friends, family and the public to make a lasting difference for the entire community.
I sometimes wonder, though, if we as a community truly understand why we do these events and designate days for awareness. While there can be much joy in celebrating how far we’ve come, there is a huge responsibility that comes when we bring attention to CML or any other disease for that matter. It’s not about making people aware of what we’ve done. It is about what THEY need to know about this disease. It’s about revealing to outsiders the exorbitant price of treatment and the impact it has on one’s financial security. It’s about persuading insurance providers that regular monitoring of CML, as recommended by the NCCN and ELN, is necessary and that our Polymerase Chain Reaction (PCR) tests are not “elective” tests and should be covered at the recommended frequency. It’s in reminding the public that CML has not been eradicated, but rather controlled (for the most part) – “functionally cured” as some may say. It’s about encouraging support for NIH funding and research. It’s about learning to be one’s own best advocate; to ask the right questions at the right time; and to fully understand the disease we, or our loved one faces so that we can take full advantage of the amazing developments that have occurred over the past few years.
As September draws to a close, I want to challenge you to look for ways to be part of the solution to real issues we face as a community. There are many ways to get involved here in the US, whether it be with the NCMLS, The Max Foundation, LLS, or other organizations that are dedicated to our community.
It’s easy to sit back and watch from the grandstands. Being part of making a difference in someone’s life – whether or not you ever meet them in person – is hard work and not for the faint of heart. The reward, however, will be yours because you’ll have the satisfaction of knowing that you’ve done something that is of lasting value.
– Greg Stephens is the Founder and Executive Director of the National CML Society and works year-round raising awareness and addressing the impact CML can have on any family facing the diagnosis.