Why Patients Need to Be Heard At Medical Congresses: The Patient's Perspective on CLL (chronic Lymphocytic Leukemia)

Here is the hope that this season of miracles offered up its miracles to those of us in need.
And if the time is not right for miracles, then let's at least do what we can to be sure that the researchers and doctors acknowledge and take into account our concerns about what we want from our providers, our therapies and our clinical trials.
If I can't get the miraculous cure, I want some incremental movement towards better therapies for all us.
This is the second part of a 5 part series on my take on the very specific topic on what the patients' voices should be part of medical congresses.
And that is just the start.
Our voices must be heard at the meetings between researchers and funders on how trials are set-up, at IRB (institutional review boards) that approve those trial designs and any subsequent revisions, payors who decide what treatments get covered and what don't, and of course in our doctors' offices when we are planning our therapy using a shared decision making model.
Listen to the first brief section monolog published on Dec 4, 2014 where I introduce myself
Here is the next segment.

Please let me know what you think?
More soon.If you want a personal response, or just want to stay in touch, please email me at bkoffmanMD@gmail.com. I have no other way of contacting. Thanks. Stay strong. After all, we are all in this together.