Tuesday, November 28, 2017

Giving Tuesday: Please Help the CLL Society fulfill its Mission of helping those with chronic lymphocytic leukemia

Help the non profit CLL Society on Giving Tuesday at https://cllsociety.org/donate-to-cll-society/.

At a recent CLL Society Patient Educational Forum, patients Judy, Leigh Ann, Rosette, Susan, Dave, Bruce and Mark, plus caregiver Beth, stepped in front of our camera and spoke from the heart.

These CLL patients and their caregivers are people just like you. They have felt the same range of emotions. They have had many of the same questions. They have reached out to The CLL Society and they have learned that they are not alone.

Please take a moment to listen to their uplifting messages.

While Brian, Patty, Betsy and Nancy, plus our amazing volunteers, keep the wheels turning, they shoulder a heavy load.

Many CLL patients are still poorly informed of their treatment options. Many still receive sub-optimal care. So we need to be ceaseless in our efforts to reach them.

Your letters of thanks, testimonials, and the goodwill you engender by spreading the word of our services uplifts our spirits and fuels our passion.

Your financial contribution will put tools in our hands.

We will keep on giving.

Please support The CLL Society on Giving Tuesday by making a donation at https://cllsociety.org/donate-to-cll-society/.

Thank you!


Patricia Koffman, Executive Director
The CLL Society

Smart Patients Get Smart Care.™

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 Koffman MDCM DCFP, DABFM, MS Ed

Founder and Volunteer Medical Director, CLL Society Inc.

Founder, http://bkoffman.blogspot.com

PO Box 1390
Claremont, CA

Wednesday, November 8, 2017

New Shingles Vaccine and What it Means for CLL patients

If you haven't had time to participate in our 2017 CLL Patient Survey, please consider doing it today. You can participate online or request a paper survey. Find out more here. If you've already participated, THANK YOU! We are hoping to capture as many voices of CLL as possible, so we can best understand the experience of patients.

You may have read in the news or on the online forums about the recent approval, both in the US and in Canada, of a new shingles vaccine, Shingrix, a killed herpes zoster (HZ) vaccine for adults over 50 years old. You can read more about shingles, the data that led to the specific indication, potential reimbursement issues and my commentary here.

Our next CLL Patient Education Forums will be taking place this Saturday 11/11 in Cleveland, OH.  I will be there and hope you can join me.

We look forward to seeing you there. After ASH 2017 we'll be in Seattle, WA and Bethesda, MD (plus more after the holidays). You'll hear the latest data about CLL and be able to ask questions of CLL Experts. See below for the full schedule, more information and to register.