Brian Koffman, MDCM, MSEd: As I traveled in my CLL journey, I found my position, not just as a patient but as an educator and a physician, added a certain responsibility. As a doctor, we can see around the corners and see where things are coming from. As an educator, I had the ability, I thought, to explain my journey in a way that would be helpful to other people.
I’ve always found that advocating for others is not a selfless act, but one that actually helps yourself. There’s actually no space between advocating for others and advocating for yourself. When you help others, you help yourself. When you help yourself, you help others. I started doing this through a blog, but it became quickly apparent that the blog was not enough. Telling the story in a chronological and vertical way was helpful, but there were always new patients coming on who didn’t know the background and we’d have to start over again.
So, I set up a not-for-profit organization, the CLL Society, dedicated to the unmet needs of the CLL community. Our motto there is, “Smart patients get smart care.” As the treatment paradigm is shifting so radically in CLL, such that there are new drugs and new therapies and new combinations of drugs and new prognostic testing and new preventative kinds of care that are becoming available for CLL patients, it’s sometimes hard for the hematologists and community to stay abreast of all of those changes. It’s very important that patients be aware and become their own best advocates in looking for the treatment options that are available to them. That’s what we try to do with the CLL Society. Again, our motto is, “Smart patients get smart care.”
The CLL Society is a 501(c)(3) not-for-profit organization, and we address a number of unmet needs in the CLL community. The first is education. Our website is the backbone of that education. So, we have basic articles there, articles as basic as, “What is a white blood cell?” or “What does the spleen do?” But we also have very advanced topics there, such as “What is a checkpoint inhibitor?” or “What is CAR T-cell therapy?” We also cover all of the conferences. Again, leveraging my position as a doctor/patient, I have access to all of the leading researchers. So, I interview them at the major meetings, the American Society of Hematology meeting and other major meetings, to find out what the latest research is telling us in CLL. And then I break that down in a patient-friendly way with explanations so patients can be aware of where CLL treatment is going.
Another aspect of education that we do is live forums. The average age of the CLL patient is 72, so we recognize that not everybody gets their information from the Web. We do live patient forums in conjunction with major universities across the country. Last year we did 12 patient forums to teach patients and their caregivers about CLL.
We also believe that there are certain things patients can only learn from other patients. While your physician can give you valuable information about your treatment and its management, only another patient can tell you what it’s like to take a particular medication, how they felt at the time of diagnosis, or how they managed things with their family. So, we’ve set up peer-to-peer support groups in over 2000 cities across the United States and Canada to help patients talk to each other in monthly meetings. We provide a framework and facilitate those groups across the country so patients can help each other in that peer-to-peer setting.
Another area that the CLL Society is involved in is advocacy. We work with other organizations, some of them larger and international, in terms of making sure that patients have access to the best information and the best treatments that are available, not only in the United States, but also in other countries around the world.
The last area that the CLL Society has been involved in is research. We believe that it’s very important for the patient’s voice to be understood by the hematology community. So, we’ve done active research and published papers at the American Society of Hematology meeting and at other meetings that talk about, how do patients make decisions? What is important to them in terms of determining what their therapy should be? Some of the results that we’ve found were illuminating and unexpected. And now they’re part of the published peer review literature and help doctors decide, along with their patients, in a shared decision-making format what the best choices are for those patients.