Being Your Own Advocate

How to be your own advocate is a skill that everyone should all learn because ultimately, no one is more invested in your outcome than you are.

FEATURE

Why the Patient’s Perspective is So Important Part 1:

Who Am I?

I was asked by friends to help with a campaign to ensure that the voice of informed patients be heard more loudly, more clearly, and more often at large medical congresses, such as ASH (American Society of Hematology) and ASCO (American Society of Clinical Oncology). To that end, I shot a series of five very short videos, starting with this one that introduces who I am and how I got involved in teaching my fellow patients and physicians about my disease, CLL, and how patients approach their medical decisions.

Me in front of bleach painting by my son, Will Koffman.

This video effort is directed at doctors and is an important but smaller piece of my larger work that focuses on providing us patients with the best possible resources to educate and support ourselves in dealing with our largely incurable cancer.

Brian Koffman 2/26/15

ADDITIONAL READING

Terry Evans, who leads our 3 dozen CLL Society Support and Education Groups in Canada and the USA, has a long story to tell about his chronic lymphocytic leukemia journey and has seen major improvements in CLL treatment over his two decades of dealing with the cancer.