Advocating for Patients With Chronic Lymphocytic Leukemia

The CLL Society is focused on advocating for patients with chronic lymphocytic leukemia (CLL). Its cofounder, Brian Koffman, MDCM, DCFP, FCFP, DABFP, MSEd, has a unique perspective with CLL, having been a clinician who was diagnosed with CLL himself.

CGTLive spoke to Koffman about the CLL Society and how it helps patients with CLL. He discussed the state of cell and gene therapy in the disease and research in the field presented at the 64th American Society of Hematology (ASH) Annual Meeting, held December 10-12, 2022, in New Orleans, Louisiana.

CGTLive: Can you talk about the origins of the CLL Society?

Brian Koffman, MDCM: So, when I was diagnosed with chronic lymphocytic leukemia (CLL), in 2005, there was not a lot of high-quality information available. There was a lot of good information about blood cancers in general and lymphoma in general, but nothing very specific on CLL. So, I looked to talk about and find ways to help other patients get the kind of information I could get as a physician. I started telling my own story of my own journey in a blog which became really popular. The blog tells my story chronologically, but it became very clear that a lot of this had to be told more horizontally, since there were a lot of people who were newly diagnosed who didn't know what a white blood cell was or what was going on.

When we saw this unmet need for the CLL community, my wife and I founded the nonprofit CLL Society. We looked at 4 different areas of support, education, advocacy and research. We grew from meeting in living rooms with a handful of us meeting to where we have 41 support groups and thousands of people meeting every month across the country and internationally. In terms of education, we started to do live webinars, and we travel all over the country. We partner with major medical institutions and large medical hospitals. As we've grown, we've been able to get into doing more research.

How has the CLL Society served patients?

Koffman: We presented papers at the American Society of Hematology meeting on the patient's journey, how patients make decisions about what kind of therapy they want, how they get second opinions and what mean that means to them. Most recently, we've been supporting basic scienceand translational research to deal with some of the great unmet needs in CLL. The last year we've gotten involved in advocacy and policy. We were disappointed to see that patients with CLL were not universally included in the definition of who is immunocompromised and qualified for some of the best therapies for preventing COVID infections. That was a hard push for us, but we were able to get the definitions changed by the National Institutes of Health, by the Centers of Disease Control and by the FDA. So now CLL and other lymphoid malignancies are recognized as being moderately or severely immunocompromised, regardless of their treatment status. And we're very proud of the role we played in that. But we have other fights to fight to help protect our community.

You’ve had a pretty unique journey from clinician to patient and now advocate. Are there any important lessons you've learned during it?

Koffman: It's been an incredible journey. The important things that I've learned, or what I try to teach to other patients, is generally that smart patients get smart care. You really need to be smart about your disease and understand that and get a smart team around you. That there's no question that you really have to understand your own disease and references in terms of managing that disease. Your team has to understand those things and be knowledgeable on the latest therapies. The treatments that are available for CLL today are radically different than when I was diagnosed 17 years ago. I'm also blessed to have a wonderful caregiver, my wife, that's really been important, andnot everybody is that lucky. Having a group around you that can support you can also be helpful, because it's not just the medical aspects, it's the psychological, the mental, and sometimes it's the financial aspects that also need help.

What is the state of cell and gene therapies for CLL?

Koffman: In terms of cell and gene therapy, I myself am 5 years out from having had chimeric antigen receptor (CAR) T-cell therapy. So, I'm a walking advertisement for what can be done with cellular therapy. Right now, all CAR T-cell therapy is experimental in CLL but we're hoping to see a therapy get over the finish line. Part of the challenge may be because our T cells are more beaten up, they're less active. But there are some promising research strategies presented at ASH to reduce T-cell exhaustion so we're hopeful about that. There isn’t too much CAR T research related to CLL at ASH, hopefully there will be more atother conferences coming up.Of course, transplant is still a valid therapy in early lines of treatment. Now I would never consider a transplant without burning through some of those other options first, but it can still be a life-saving option for patients. Frankly, I’m a little disappointed in the lack of cellular therapy topics at ASH this year for the CLL population but hopefully we’ll see more of that in the near future.

Transcript edited for clarity.