CLL Society: A Valuable Resource for Patients and the Health Care Team, With Founder Brian Koffman, MD

In this interview, Oncology Data Advisor speaks with Dr. Brian Koffman, founder of CLL Society, a nonprofit organization focused on patient education, support, and research for chronic lymphocytic leukemia (CLL). Dr. Koffman shares his personal story and how it led him to establish CLL Society and explains how the valuable resources they provide can benefit both patients with CLL and the health care team members who treat and support them.

Oncology Data Advisor: Welcome to Oncology Data Advisor. Today I’m joined by Dr. Brian Koffman, who is the founder of CLL Society. Dr. Koffman, thank you so much for being here today.

Brian Koffman, MD: My great pleasure, thank you.

Oncology Data Advisor: To start off, would you like to tell us a little bit about yourself and your background and how you came to establish CLL Society?

Dr. Koffman: Absolutely, thanks. I’m Dr. Brian Koffman. I’m a retired family doctor, and I was diagnosed in 2005 with CLL. As those people familiar with CLL will know, what we like to say at CLL Society is that if you know one CLL patient, you know one CLL patient. Everybody’s course is very variable. I had quite an aggressive form of CLL. Though family medicine prepares you for a lot of things, hematology is not one of the strengths of most family physicians. We’re pretty quick to refer off to our hematology colleagues any abnormalities that we see in blood counts, especially if it’s suggested that it’s a malignant process.

So, while I knew a little bit about chronic leukemia, I didn’t know very much when I was diagnosed. I found a dearth of real quality information on the Internet to help me, and also a dearth of really promising treatments at the time, especially with my prognostic markers. As my leukemia grew more and more aggressive, and I needed treatment and I opted for a first remission allogeneic hematopoietic stem cell transplant or bone marrow transplant, I started to tell people and my patients about what was going on. My kids said to me, “Dad, that’s so old school, you should be blogging about this on the web.”

So, I started to blog, and the blog became extremely popular. That morphed into my wife and I founding the nonprofit CLL Society. The blog tells everything in this sort of chronological order, but the website is much more horizontal. If you’re a newbie and you don’t have any idea what a lymphocyte is, we have handouts, and that’s to help the physician explain to their patients if they want. They can refer to that. For example, what does the bone marrow do? What does the spleen do? Why is it enlarged? What’s going on here?

We have all kinds of information to help patients understand CLL from the very, very basic sort of “deer in the headlights” newly diagnosed to the very sophisticated. We attend and actually present research at the American Society of Hematology (ASH) meetings and bring the most up-to-date information there in patient-friendly terms. Patients can access interviews with the principal investigators (PIs) at those meetings so we can bring up-to-date, cutting-edge information to people, because we saw that there was this great unmet need for education and support.

Oncology Data Advisor: Great, thank you. So, from the health care provider perspective, what are the resources and the education you have that could benefit their patients?

Dr. Koffman: We’re there to help make your job easier and to help you with your patients in shared decision making. As we know in CLL, there are several excellent options that have become available in the last several years in terms of targeted therapies, oral therapies, some great immunotherapies that are available, and some great experimental therapies. The resources that we have are formed on four pillars: education, support, advocacy, and research.

In terms of the education, we have a website, and the website has areas for the newly diagnosed, for the more sophisticated research areas, and all kinds of other things like financial help, psychological help, all kinds of things. We have an “Ask the Expert” where people can send in questions, and we have CLL experts answering those. We have nurses, palliative care doctors, pharmacists, and PhDs in lab science, all helping us answer the patients’ questions. We’re there to help your patients in terms of that.

We also do webinars, and lately about half of our webinars have been on COVID-19. Patients with CLL, as this community knows, are very compromised regardless of their stage of therapy or their therapy status. We have been responding to patients’ questions about what their options are during the pandemic. We also have over 40 support groups across the country, and these are very carefully monitored. We have very strict rules in terms of what kind of information we can and can’t give, and confidentiality rules. But they also have an educational aspect.

I’ve put together a curriculum, so over the course of 12 monthly meetings in the year, people learn the basics of what is CLL, how it’s a leukemia and lymphoma at the same time, and very sophisticated understandings of what is an immunotherapy, what’s a targeted therapy, and how these differ from chemotherapy in general. So, we have that, and we’re also very involved in advocacy. It was our work that led the charge to have the National Institutes of Health, the Centers for Disease Control (CDC), and the FDA change the definition of who was moderately or severely immunocompromised to include chronic lymphocytic leukemia regardless of the stage of therapy, which reflects the reality but was confusing in the language.

We’ve advocated for other drugs and other issues in terms of access to vaccines and things like that. In research, we’ve done the largest survey ever of CLL patients. We’ve presented at the American Society of Hematology in terms of what’s important to patients and their treatment decisions, and we’re constantly presenting new research in that area. But we also fund research in CLL in terms of the bench science and translational science because we see it as an unsolved problem with significant unmet needs. So, we’re there to help you.

The main areas I think we would help are with our support groups. These are specific, and they’re physician-curated, so we make sure that the information in them is carefully monitored and just a quality source of information. Rather than referring your patients to Dr. Google, refer them to the CLL Society, where everything we have is on CLL and small lymphocytic leukemia (SLL). You can be sure that what we have is up to date and is very accurate and supportive of the care that you’re giving your patients.

Oncology Data Advisor: Sounds like a lot of really awesome resources.

Dr. Koffman: We try really hard, and next year, we will actually have a specific area for physicians where you can download and present to your patients if they have a question. If they ask, “What does my spleen do?” You can hand them the handout, which has the picture of the spleen and what the spleen does. It can save you some time and reinforce the education that you’ve given in the office on different therapy options we have, and all kinds of things to try to help you in a kind of an unbiased way.

Oncology Data Advisor: Since you mentioned the ASH meeting, which is coming up, is there any research you’d like to highlight that’s being presented there?

Dr. Koffman: We’re always excited about the annual meeting and all the good stuff that’s presented there. I don’t know that there are any practice-changing abstracts in CLL that’ll be presented at ASH this year, but I think that there are some revolutionary papers that will be presented. We’re getting pretty excited about combinations. If you look at the oral sessions, most of them are about doublets and triplets, and I think that’s the direction things are going in. We’re also excited about time-limited therapy, and we’re seeing more of that.

We’re also interested in and very excited about some of the papers coming out on second- and third-generation Bruton tyrosine kinase (BTK) inhibitors, which may have a safer profile. There’s a hint in one of the late-breaking abstracts that there may even be better efficacy. We’re really excited to dig into that and see if it may have the potential of being a significant practice-changing abstract. So, we’ll see what happens.

Oncology Data Advisor: Is there anything else you’d like to share about either the Society or about the CLL field in general?

Dr. Koffman: For most hematologists and general oncologists, I think there’s often a sense of relief when patients come into their office with chronic lymphocytic leukemia, because for many patients, it is an indolent disease. We know that maybe as many as a quarter of patients never need treatment and have a normal life expectancy.

But from the patient’s perspective, that moment of diagnosis and the moment that they’re told they’re going into watch-and-wait or active observation is a game changer. We encourage patients to get the support of other patients. Sometimes, somebody can meet a fellow patient who’s had the diagnosis for 20 years and can give them more solace than any of the kind words and reassurances that their physician can give them. So, that’s one piece.

The other is just that it isn’t a solved problem. Though we have great therapies, once the patient has been failed by a B-cell receptor inhibitor like a PI3 kinase inhibitor, a BTK inhibitor, or by venetoclax—the only BCL2 inhibitor that’s out there—they’re really short on options. Outside of a clinical trial, their prognosis is very poor. We also have a significant number of patients who develop Richter transformation. So, don’t see CLL as a solved problem. Understand that there’s still a lot that needs to be done. Patients are now living longer, they’re being diagnosed earlier and younger, and they may burn through the couple wonderful treatment options we have.

There are exciting looks at new drugs in development and exciting looks at new combinations. We can help you and your patients stay up to date on all of that. We’re deeply appreciative of working with the physicians in the community and in the academic centers to help them help their patients in a better way.

Oncology Data Advisor: Thank you so much for explaining all this. I’m excited that we’ll be able to refer people back to CLL Society to learn more.

Dr. Koffman:, that’s where you’ll find us.

Oncology Data Advisor: Perfect, thank you again.

Dr. Koffman: Thanks.

About Dr. Koffman

Brian Koffman, MD, is a Family Medicine Doctor who founded CLL Society with his wife after being diagnosed with CLL in 2005. He currently serves as Executive Vice President, Chief Medical Officer, and Board Member at Large. Dr. Koffman is dedicated to improving patient support, advocacy, and health care education for the CLL community.

For More Information

CLL Society (2022). Available at:

Transcript edited for clarity. Any views expressed above are the speaker’s own and do not necessarily reflect those of Oncology Data Advisor. 

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