Dr Brian Koffman is a modern day pioneer, married to Patty who is the co-founder with him of perhaps one of the most remarkable patient groups around CLL Society Inc.. It is an absolute privilege to have both of them frequenting our little corner of the web, and even more so that he agreed to be interviewed (often Brian is the one doing the interviewing). The conversation was deep and rich and you can see it right here on this page.

Diagnosed with CLL 14 years ago in the dark ages for the field, and identified with the worst collection of genetic markers, his future looked very bleak.

But there was someting about Brian that refused to give up and clung onto hope even though 14 years ago the doctors had far fewer treatments. Hope often triumphs.

Part of the story is surely the combination of his own personal spiritual and moral values driving him towards seeking the good of others, knowing that would also lead to good for himself.

This deep seated philosphy is drawn in part from his Jewish faith and excursions into Mindfulness meditation to such an extent that at one point he was called a Bhu-Jew. Since he had picked up some of the helpful ideas of mindfulness that I have also latched onto in my own emotional anguish at times.

But this warmth of heart and spirit are combined in this extrodinary man with a dogged determination to get to the bottom of the uncertainty and lack of knowledge we all face. Brian was a family doctor but he has taught himself everything there is to know in his fight for personal survival and to help many of his CLL friends to also still be here 14, 20, maybe even 30 years after diagnosis.

Early on Brian realised that the only way to survive was to ensure he had the best experts at his finger tips and on speed dial. Those friendships got him access into the clinical trials that saved his life.

He wasn’t content to just save his own life. And so he set about becoming a bridge between the world of high science and the world of the patients. And so the CLL Society was born. Education webinars, articles, his blog, and a wealth of materials are out there and ultimately it is all down to him and his wife.

To help other patients begin to get access to the same level of expert care he had, initially he drew up lists of names of the people running the clinical trials, writing the clinical papers, and speaking at the international conferences. Lists were made publicaly availalbe of just which doctors knew what they were talking about as the field started to move at break neck speed. So some patients were able to figure our who they should get referred to.

But then he hit another roadblock: cost, and in particular the reluctance of some insurance companies to foot the bill in the US system. But such an imovable object met an equally unstoppable force in this man’s innovative approach. His sheer determination led to him carving out a whole new path.

Somehow by obtaining generous donations of time and money he was able to set up a service that was very much cutting edge a few months ago but now looks prophetic. Patients in the USA who can not access the real specialists any other way are offered video consultations over the interenet for free. These can be especially helpful at key decision points such as is it time to treat and what treatment.

Brian called himself a geek at the beginning of the call, and I confess I have been called the same thing myself at times. But this man was so much richer, and deeper and more spiritual than the stereotypical science boff. He is a very busy man but we ended our all too short interview which covered much more ground than I have captured both agreeing to try and do this again. What questions would you like to ask Brian the next time we manage to find a space in his busy diary?