CLL Support Association

Prevalence and Economic Burden of Chronic Lymphocytic Leukemia (CLL) in the Era of Oral Targeted Therapies

This has been a banner year for developments in the treatment of CLL. In this last week of 2015 on the CLL Society website (, in our Conference Coverage section, we share an interview from ASH 2015 with Dr. Nitin Jain where he discusses the Prevalence and Economic Burden of Chronic Lymphocytic Leukemia (CLL) in the Era of Oral Targeted Therapies. The success of the latest targeted therapies has increased the number of patients who are living with CLL (prevalence), but what is the economic burden of these therapies? Important topic!

Last week, we published our second quarterly newsletter, The CLL Tribune ( . Don't miss this special collection of research news (Dr. Byrd's interview about ACP-196) in Conference Coverage, Dr. Furman's answers to reader's questions in Ask the Doctor, basic CLL information (What is a Lymph Node?), fun facts and a wealth of wisdom and shared experiences from our fellow patients. If you you are reading this for the 1st time here, you are missing out on much news, and should consider signing up for our alerts.

If you have questions you like addressed in future newsletters, OR are interested in the results of the Q3 Reader Poll, OR are willing to answer a couple of questions in our current Reader Poll about the CLL Society website, please go to the Ask & Tell section. Our goal is to fulfill the unmet needs of the CLL community, so we always welcome your feedback and questions.

For those of you in the Charlotte or Atlanta areas, we just became aware of 2 patient meetings coming up in February: Thursday, February 4th in Charlotte starting at 5:30 PM at the Hampton Inn & Suites Charlotte, and Saturday, February 27th starting at 9:30 AM at the Sheraton Suites Galleria-Atlanta. CLL patients will be sharing their personal stories, and local CLL experts will be providing a talk on the basics of CLL. You can call 844-482-6815 to register. Complimentary breakfast and parking are provided and you are welcome to bring a guest. I should be at both meetings to meet with attendees who may be interested in starting a live support group in those areas. I look forward to meeting you there.

Happy New Year!

Stay strong.

We are all in this together

\Brian Koffman

6 Replies

Thank goodness someone talking business sense. Let's hope that companies who control this area are listening because otherwise they will have drugs to sell that no one or country can afford. Best wishes

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Thank you for all that information. Just went on that site and there is lots of valuable information about CLL. Thanks again. Enjoy your day!!!


All of us in the US need to lobby Congress to allow Medicare to negotiate oral drug prices. If you are fairly indigent, you can get help from PAN or LLS. If you have a healthy income ($90k or above) then you will have to pay Medicare Part D retail prices for the wonderful new oral drugs. It's a crime and we all need to talk loudly about this. It's amazing how few people realize the pit they will fall into when entering the Medicare Part D world.

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I understand costs are around $10,000 per year including the donut hole and then the percent co-pay after.


You are right, Brian. I did a hypothetical rx (with CLL doc help) and it was just under $10k. (CLL doc was shocked. Pharma had told him "Bill Gates will only have to pay $10 per month". They neglected to mention what Bill Gate's father would pay as being on Medicare, he is ineligible for pharma assistance.)

People listen to you and Pharma listens to you so please raise your voice to lobby Pharma and Congress to change the Part D bill and allow Medicare to negotiate for oral drug prices. We elders have paid into the system for years and deserve better. And biggest irony .. CLL is considered a disease of the elderly, with the median age being over 70.


I am doing what I can to help lower costs. We are organizing with other lymphoma groups to see what can be done.


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