Along the way I learned that this concept is not so self-evident to all organizations purporsing to represent patient interests. I came to this realization during a meeting many years ago that brought together Canada’s largest and best-known non-profit organizations. I actively listened to the presentations and discussions, hoping to gain a few nuggets of wisdom on the keys to success. Ironically, I began to question what was being discussed and realized that Myeloma Canada’s path to success would need to steer a different course. It dawned on me that although important, organizations should not place too much emphasis on their fundraising prowess or ability to capture national headlines as measurements of success. Long-term success and continued relevance is contingent on remaining close to the patient. In this regard, words are important. During the course of the meeting, patients were impersonally being referred to as clients. I shuddered. For me, this was the definitive “aha” moment that validated my patient-focused vision for Myeloma Canada. These organizations, at least from my viewpoint as a patient, had lost their way. Moreover, I was the only patient present at that meeting. Which led me to embrace the saying “If you’re not at the table, you’re on the menu.”. We believe the patient voice needs to be included and heard on all issues that directly impact our life…from drug funding approvals, to health policy development and clinical trial design, to name a few. Myeloma Canada has enabled the engagement of patients and others impacted by myeloma by helping build a strong national community, united in voice and purpose. This has been the key to our success and will continue to be the focus of our efforts and a key measurement of relevance to our community for the years to come.
