Rare Community Profiles
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.
INTERVIEW: Dr. Brian Koffman Discusses the Complexities of Immunization for People with CLL/SLL
August may have been National Immunization Awareness Month—but it’s never too late to share insights on the importance, or complexities, of immunization for people living with cancer or who are otherwise immunocompromised.
Vaccinations play an incredibly crucial role in the care of immunocompromised individuals to reduce the risk of contracting and suffering from certain infectious diseases. However, there are some challenges with vaccinations within this community in terms of safety. Some vaccinations are safe and recommended; others, such as those containing live viruses, may not be safe.
Dr. Brian Koffman, the Chief Medical Officer for CLL Society, recently shared insights into which vaccinations are safe for people living with chronic lymphocytic leukemia (CLL) or small lymphocytic leukemia (SLL), as well as why vaccines keep us all healthy.
About Dr. Brian Koffman, MDCM (retired), DCFP, FCFP, DABFP, MSEd
Dr. Brian Koffman is a retired board-certified family doctor and clinical professor at the Keck School of Medicine, USC. Besides his medical degree, Dr. Koffman holds a Master of Science in Medical Education and loves to teach; he is known as an expert educator for CLL. As Dr. Koffman shared with me, he is also a CLL patient:
“I’ve had chronic lymphocytic leukemia since 2005, so over 18 years now. It is the most common blood cancer in adults.”
But when Dr. Koffman was first diagnosed with CLL, he felt as though there were not many resources for patients with either CLL or SLL. To denote the difference, he shared:
“These are the same cancers, but SLL manifests more in the lymph nodes and CLL more in the blood and the lymph nodes.”
As Dr. Koffman and his wife Patty began to navigate this uncertain terrain, they realized that there needed to be a change: more information, and better care, for others within this community. At first, they began outreach through starting a blog at the suggestion of his children. Next, Dr. Koffman began leveraging his background and experience to meet, and form relationships with, researchers. He shares:
“There was a revolution in CLL at the time. I was meeting people in the halls of hematology conferences, learning about cutting-edge research. The more I learned, the more it became clear that our blog was just not enough to make an impact.”
As Dr. Koffman and his wife pondered on how they could best serve this community, an idea struck. They wanted to develop a platform, an organization, that could fill the gaps and unmet needs, advance research, and simultaneously provide necessary information to patients, caregivers, and family members.
This is how the CLL Society was born.
How CLL Society Supports the Patient Community
CLL Society is an inclusive, patient-centric, physician-curated nonprofit organization that addresses the unmet needs of the chronic lymphocytic leukemia and small lymphocytic leukemia community through patient education, advocacy, support, and research.
Through its robust and sophisticated website, CLL Society offers information for people across the spectrum of CLL/SLL, from the newly diagnosed to those, like Dr. Koffman, who have been living with this cancer for years. Says Dr. Koffman:
“Our website provides people with all the information they need, from what lymph nodes and spleens are to BIPOC resources or the newest updates in clinical research. My goal has always been to bring information to people in patient-friendly, easily accessible and understood ways. We also hold monthly webinars on relevant CLL/SLL and have over 40 support and education groups that meet online monthly with trained facilitators. These groups are invaluable for providing comfort, support and credible information to newly diagnosed individuals. When someone who is newly diagnosed meets someone like me with an aggressive form of CLL x 18 years, and can speak with me first-hand, they feel heard and seen on their own journey.”
CLL Society also advocates for increased therapeutic accessibility and more consideration for historically excluded communities. A disproportionate number of patients are not getting the best quality-of-care due to historic distrust and mistreatment. CLL Society aims to be equitable and inclusive in its approach to reach communities of color.
More recently, CLL Society has also been involved in research; the organization is currently funding basic and translational scientific research to develop the next generation of researchers focused on improving outcomes within CLL/SLL. CLL Society has also recently opened two new grants, the Integrative Medicine and the Clinical Scholar Awards, dedicated to supporting innovative research in the field of CLL and SLL.
Adjusting to the COVID-19 Pandemic
In 2020, our world as we knew it turned upside-down with the onset of the coronavirus pandemic. Over the past three years, COVID-19 led to more than 6.25 million hospitalizations across the United States and was linked to 1,143,192 deaths.
When the pandemic hit, Dr. Koffman noted that it disproportionately affected the CLL/SLL community. He shares:
“We agree with the official publications that people with solid tumors and blood cancer in active therapy were more susceptible to COVID-19. However, that recognition left out the fact that those with CLL/SLL, regardless of their treatment status, are still immunocompromised and more susceptible. One of the leading causes of death in CLL is not just disease progression, but infections. When we were researching the impact of the pandemic, we discovered that COVID was fatal for up to 30% of people with CLL, which was a much higher rate than the general population. The immunocompromised community is also significantly over-represented in hospitalizations and stays in the ICU.”
So, he notes, the CLL/SLL community was thrilled with the possibility that a vaccination might be developed to help confer immunity and protect them against poor outcomes. But as the vaccine rollout occurred, initial responses were not as promising as expected. Says Dr. Koffman:
“We quickly learned that people with CLL/SLL had vaccine responses that were less predictably robust and didn’t form the protective antibodies needed to offer us protection. Some treatments for our cancer also target our healthy cells, suppressing our healthy immune system. So, for people on certain therapies, vaccine response rates were dismal—in the low single digits to 0%—even six to eighteen months after stopping therapy. That is why there are different vaccination schedules for immunocompromised individuals. Getting boosted, and repeated shots, have more of a benefit. Our vaccination rates are 90-100% compared to the general population. We ask that everyone gets vaccinated and behave as if they’re not vaccinated, such as wearing a mask if there’s a surge or avoiding large social indoor events like concerts or professional sporting events.”
Although people within this community were more susceptible to infection, an estimated 60-70% of people with CLL/SLL have not contracted COVID-19. This is attributed to the lifestyle adjustments made by people within this community, such as hand sanitizer usage, hand-washing, mask wearing, social distancing, and passive immunity approaches like taking antibodies from someone who has recovered or manmade antibodies.
Additional Vaccination Considerations
Outside of the COVID-19 vaccination, CLL Society also provides various resources to its members that help them to stay informed on vaccines so that families, caregivers and other medical professionals can be in-the-know when it’s time to visit the clinic for their yearly checkup. These resources also include comprehensive information on vaccinations, safety, and how to be proactive in your own care.
For example, when you have cancer of the immune system, it is not predictably safe to take a live vaccine such as MMR or yellow fever. Dr. Koffman explains:
“We don’t know if these vaccines would cause problems for us. There are other vaccines that you should get, such as those for influenza. But while healthy individuals might use nasal spray, people who are immunocompromised should only get the flu shot. If you’re not sure what to do, you can bring information from the CDC website, patient groups, or CLL Society to your doctor. Be proactive in your care. Maybe you need more frequent boosters or want to talk to your doctor about the shingles vaccine. While doctors should be informed, you also need to stay on top of that. Smart patients get smart care.”
Dr. Koffman wants to reinforce the necessity of getting your immunizations—even if the responses may be less vigorous. CLL Society also offers guidelines for vaccinations for people with CLL/SLL. In the end, Dr. Koffman shares:
“We are living longer and longer with CLL, so anything that we can do to protect our immunity is critically important.”
