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CLL Society: Paving the Way for CLL Patients and Survivors With Brian Koffman, MD

CLL Society is a patient-centric, physician-curated nonprofit organization that prioritizes patient education, advocacy, and research for the chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL) community. Dr. Brian Koffman co-founded the organization after being diagnosed with CLL in 2005, and he currently serves as Executive Vice President and Chief Medical Officer. He recently attended the American Society of Hematology (ASH) Annual Meeting to acquire the latest CLL research to bring back and disseminate to patients, and while there, he sat down with Oncology Data Advisor to share more about the educational and advocacy work that the society does, updates in CLL research being presented at the meeting, and how patients with CLL can become more involved and empowered in their treatment and care.  

Oncology Data Advisor: Good morning, and welcome to Oncology Data Advisor. I'm Keira Smith. Today, we're at the ASH Annual Meeting, and I'm joined by Dr. Brian Koffman. Thanks so much for coming on the show today.

Brian Koffman, MD: Thank you so much for having me. I'm really excited to be here.

Oncology Data Advisor: Yes, we're excited to have you. I'm eager to learn more about the CLL Society. To start off, would you like to introduce yourself and what you do, and then tell us a little bit about the CLL Society?

Dr. Koffman: Yes, thank you so much for this opportunity. I'm Dr. Brian Koffman. I'm a retired family doctor, and I'm the Co-Founder, Executive Vice President, and Chief Medical Officer of the nonprofit CLL Society. The CLL Society was founded to meet the unmet needs of the CLL community. I myself am a CLL patient. I was diagnosed in 2005, so right now, it's been over 18 years of having a very aggressive form of CLL. When I was diagnosed, there was a real paucity of quality information online or anywhere to find out about CLL. There were also not the incredible, wonderful treatments that are available now.

My wife and I tried to figure out how to solve this problem. Being a physician myself, I was able to go to meetings like ASH and the American Society of Clinical Oncology (ASCO) and get that kind of information, but I thought, "You shouldn't need to have a medical degree to have access to all the top thought leaders. Everybody should have that kind of access." So, I started blogging about what I was doing. That became extremely popular and kind of morphed into the CLL Society website, which has expanded massively from that.

We had support groups that would meet in each other's living rooms, just three or four of us. Now, we have 40-plus support groups across Canada and the USA that meet monthly. The website has grown to where we've had over 5 million page views at this point, and that's all CLL patients and caregivers. Plus, there is a whole plethora of other services that we offer—free second opinions, webinars, Facebook Live events, and Ask the Experts. People can send in questions that we have all kinds of experts answer for them. There are all kinds of facilities and services that we offer to patients. We're sponsoring research, and we're doing advocacy at the state and federal levels. Whatever we can do to help the CLL community, that's what we're about.

Oncology Data Advisor: That's really amazing. It sounds like you have some fantastic resources and a lot of avenues for patients who might learn in different ways or look for their education in different places.

Dr. Koffman: Right, people learn differently. We have articles that people can read, we have videos, and we have cartoon-like flip books for people who want to do things that way. We're setting up learning modules where people get pretest quizzes, watch a video, read some texts, and take a posttest—not that these are pass-fails, but it's just trying to make it more fun for people, more game-like. Different people have different learning styles. Some people just want to read the article and see the abstract, and other people want it all explained to them. We try to meet everybody where they're at.

Oncology Data Advisor: So, tell us what you and your team are doing here at ASH. What have you been up to the last couple of days?

Dr. Koffman: ASH is the preeminent hematology conference, especially for malignant hematology, and CLL is a cancer of the immune part of the blood system. So, we wear a lot of hats when we come to ASH, and we bring a whole team. One of the most important things that we do is attend the CLL sessions. There are different kinds of CLL sessions. For me, the most exciting ones are the oral sessions. These are the top papers that are presented orally, and you have a chance to interact with the principal investigators who are presenting the data. You get to see the absolute cutting edge. People honestly hold research to present it at ASH because it's so prestigious, so we see the top papers and the latest research. That's kept me quite busy, doing that. Then there are poster sessions where you can go around and visit the posters.

Then the other thing I do is I meet with a lot of the researchers, and I sit down with them, just like you're interviewing me. Twenty minutes from now, I'll be interviewing someone about their poster and what their research is. That's another big part of the day. We also meet with other advocacy organizations, some that are in broader blood cancers and some doing things more internationally. We're mostly based in the US and Canada, but I have colleagues who are working outside of there. I get to meet with old friends who I've collaborated on with research and advocacy projects. We meet with our partners in the pharmaceutical industry too, to see what's the latest in the pipeline—what drugs are getting developed, what drugs are being dropped, what clinical trials are opening. I'm a big clinical trial junkie, so I want to know what trials the industry is opening, what things that they're developing, and what our patients should know about. So, it's pretty busy.

Oncology Data Advisor: It sounds very busy. That's amazing, like you said, for patients who aren't able to attend these meetings, that they have you on the ground here, talking to people and being able to share all this expertise with them after the fact.

Dr. Koffman: Right, and the doctors are getting it now. When I first started doing this, they would talk in this medical-ese, and I'd have to stop and translate every third word so the patient would understand it. But they've got it now, so they don't use the big fancy words. They use the patient-friendly language. I'm not saying to make it dumb, but to make it simple and more accessible to patients. There are a lot of very difficult concepts that we try to explain to people. It's not just "This drug is wonderful. Take it." We're really getting into the details of the molecular biology, and we pride ourselves on trying to make the science accessible for people.

Oncology Data Advisor: Absolutely, yes. Have you seen any notable CLL research here?

Dr. Koffman: I think that there are a couple areas that have been presented. At ASH 2023, I can't say that there are any sea changes or any practice-changing things—"We've always been treating CLL this way, now we're going to treat it this way." I haven't seen that. I've seen it at past ASH meetings, but I don't see it this time. You can't expect to see that every year. Most of the changes we're seeing are more evolutionary than revolutionary. We're seeing updates of data where before we had one year's data, and now we have two years' data. It's reassuring to see, "Hey, this drug looked like it was pretty safe and very efficacious after only six months of data, and after 18 months, those curves continue; in fact, they get better." That's been incredibly interesting to see.

We've also seen some subgroup analysis to see which groups of patients are helped by this therapy or that therapy. That's been helpful too. There's been less, but some, exciting information on new types of therapies. In CLL, one of the classes that's getting a lot of attention right now is BTK degraders. Can I take a little science diversion here? The way most of the drugs work is if there's a kinase—which is just an enzyme, something that speeds up a chemical reaction—they block it. They put the key in the lock, but they don't turn the lock, so the lock doesn't work anymore. But what these medications do is they put a target on the protein of interest, this kinase, this enzyme, and then they have a part of it that chews it up, so it's gone. It's not blocked; it's destroyed. It's a very powerful mechanism. It's still experimental, but it's pretty exciting.

There's also a lot of very interesting research on drugs that block these enzymes in the traditional way, but they block them through different mechanisms. If you're resistant to this drug, this drug is going to work because it doesn't bind at the same site. It binds in a different way. When patients become resistant, when there's pressure on the cancer, the cancer tries to evolve around that. But there are new drugs that say, "You may be resistant to this drug, but you're not going to be resistant to me." There's a lot of exciting work in those kinds of areas.

Oncology Data Advisor: That's really exciting, especially to see that all presented here firsthand. My last question for you is, for patients who aren't at this meeting who are listening to this podcast later, do you have any messages or themes that you've seen here at ASH that you would like to share with them?

Dr. Koffman: At the CLL Society, our motto is "Smart patients get smart care." We advise every patient that they don't have to know the latest molecular science, but it's good to be on top of what the latest research is saying about what tests you should have and what the data are. For example, we have really strong data from the last five to six years that these new targeted therapies are better than chemoimmunotherapy in almost every situation. Patients need to know that.

CLL is a fairly rare disease, and your hematologist-oncologist is a busy doctor. He or she may not be on top of the latest literature in CLL, or they may not see that many CLL patients. But you can go in and say, "Hey, there are these new medications that look really promising." We ask people to stay on top of that. If they can't, maybe they have an adult child, a sibling, a partner, or a caregiver who can help them. If you stay informed and you engage in that shared medical decision making with your physician, your care is going to be much better. Patients who are involved in their care do better.

That's especially true with CLL, which is a slow-going cancer for most people. You have time to learn about it, time to become an expert, and time to shape your own care. I've had a very aggressive form of CLL for 18 years, and I've been deeply involved. Yes, I am a physician and I understand that, but it was also my decision to be so involved, not just to hand it off. I'm not a hematologist or oncologist, so I had to learn all this stuff. Some of it's difficult, but a lot of it isn't. If you have common sense, you can learn this stuff and be involved in your care.

Oncology Data Advisor: Amazing. Well, thank you so much for stopping by to talk about this today. It was wonderful hearing about CLL Society and the work that you do. We look forward to working with you more in the future as well.

Dr. Koffman: Thank you so much for this opportunity. We love to get the word out, so visit us at cllsociety.org.

About Dr. Koffman

Brian Koffman, MD, is a retired Family Medicine Doctor who founded CLL Society with his wife, Patty Koffman, after he was 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. He is a sought-after writer, educator, and speaker for physicians, patients, and the public.

For More Information

CLL Society (2023). CLL Society: smart patients get smart care. Available at: https://cllsociety.org/

CLL Society (2023). CLL-specific patient support groups. Available at: https://cllsociety.org/programs-and-support/cll-specific-patient-support-groups/

CLL Society (2023). Ask the experts. Available at: https://cllsociety.org/resources/ask-the-experts/

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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