Saturday, November 25, 2017

Patient Survey, Free Expert Access for CLL (chronic lymphocytic leukemia) patients, and ASH 2017

Hope for my American friends it was a great Thanksgiving. 

Mine was vegan and I still managed to overeat.

If you haven’t already completed our patient survey, I ask you to do it here: https://cllsociety.org/survey/

The  compiled data from this will be used to inform the providers and payers and industry about the unmet needs of our community. Please help us.

The CLL Society has launched a new pilot project to meet what I see as a glaring and dangerous unmet need especially for underserved CLL populations.

If you live in the USA and have never seen a CLL expert, we are offering a free HIPAA complaint online visit with just such an expert to answer your burning questions.This is only for a small number of patients in this pilot effort


Now I am getting ready for ASH. I first go as a patient to find out what I should do next about my slowly relapsing CLL on ibrutinib, I go as a reporter to learn the latest news and get answers to our questions and report on that news, I go as an advocate to meet with other advocates to ensure all are getting their best care, I go as a family doctor who has many CLL patients in his practice to learn how to best care for them by attending the many CLL oral and poster sessions, I go as a researcher to meet with the other investigators in our consortium from across the county to best leverage our findings to help improve care, and I go as the medical director of the nonprofit CLL Society to promote our work. And finally, I go as a friend to reconnect with the many smart doctors, researchers, advocates and industry leaders from around the world who have done so much and can do so much more to help us all.

ASH is intense, usually 7 AM until late in the evenings with days of prep, miles of walking, tight schedules, little vegan food, and less rest.

But I wouldn’t miss it- it is MECCA for blood cancers, though honestly this year at least after my first take, the 300 plus CLL abstracts seem more evolutionary than revolutionary. 

Stay strong

Brian

Brian Koffman MDCM DCFP, DABFM, MS Ed

Founder and Volunteer Medical Director, CLL Society Inc.
http://cllsociety.org

Founder, http://bkoffman.blogspot.com

PO Box 1390
Claremont, CA
91711

2 Comments:

Anonymous Anonymous said...

ASH may be evolutionary with the exception of the late breaking venetoclax plus rituximab Phase III data which looks impressive.

November 28, 2017 at 7:45 AM  
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November 30, 2017 at 12:05 AM  

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