The short and most honest answer to most of the questions about vaccines, antibody responses, and masks is that we just don’t know for those us with Chronic Lymphocytic Leukemia.
Here are some of my own insights and opinions, not to be taken as medical advice.
We don’t know whether having measurable antibodies post-vaccine is protective, let alone what level of antibodies we need to provide us any level of protection. The present tests are not quantitative against any agreed-upon standard. Do they measure neutralizing antibodies (those that guard against the virus)?
That being said, if we have no antibodies it is wise to assume our protection is suspect. Most experts advise that those of us with CLL act as if we are unvaccinated. T cell response and other factors might help and offer some protection, but we just don’t know yet.
If we do have some antibody response to the vaccine, it can be even more tricky in my opinion, especially with the premature “masks off” CDC guidance in the US.
Many CLL experts say that we should act as if we are unvaccinated no matter what our antibody tests show or if we don’t get tested. See https://cllsociety.org/2021/04/cdc-graphic-guidance-on-safer-activities-during-the-covid-19-pandemic-how-it-applies-to-cll-patients/.
Personally, I don’t agree. Some including myself and Dr. Byrd are in this camp, and suggest that if we do have a good antibody bump-up post-vaccine that we assess our own personal willingness to take some level of risk as we continue to “live our lives.” Based on that self-assessment, we then might consider going maskless in most outdoor settings except for in crowded outdoor spaces. And indoors, consider taking off the mask if we are just with a few fully vaccinated friends or family for a meal or visit. Being around unvaccinated kids for us presents a whole other data-free zone. And mosh pits, planes, and crowds are still off-limits. Dr. Byrd explains it well.
When we do need masks, now more than ever they should be well-fitted N95s. We need to protect ourselves well, as we can no longer rely on masked strangers to protect us. CLL Society is looking at reusable high-quality masks and other wildly innovative PPE. Stay tuned. We are leaving no stone unturned and we may have some surprises coming.
CLL Society, LLS, Blood Cancer UK, Mayo, and others are working hard on many of these questions and more importantly, on ways to protect us.
The quick way out is not likely herd immunity anymore, at least in the US. Although the UK has a better shot. Still, less disease and more folks being vaccinated means less risk of transmission and that’s good news for all of us.
Better therapeutics are coming, but are still a long way off. Some very promising antivirals are in development. These would change everything if they are proven highly effective, are approved, and are easily accessible.
I even want to see more data on dirt-cheap Ivermectin for prevention. The prepublication data from India on pre-exposure Ivermectin use was encouraging, but let’s wait until it’s published. Our hopes have been dashed before with hydroxychloroquine and others.
I suspect that Anti-SARS-CoV-2 monoclonal antibodies are our next best thing including Regen-COV, (which is what former President Trump received after testing positive) but it would be used pre-exposure for us. They already have great results in pre-exposure use (∼95% in unpublished data) for those who are immune-competent in preventing the disease, but there is no data yet on vulnerable populations yet. We are impatiently waiting for EUA, as this could be a game-changer for us.
AZD-7442, the PROVENT trial that I am on, should read out later this year or early next year. Adagio (an open trial here that will likely be modified to allow those who’ve been vaccinated to enter), MAYO, GSK, and others are developing antibodies. Trials will be opening for folks like us who don’t respond to the vaccine.
CLL Society is in the thick of it, linking arms with others and supporting research. We may turn to you again for your help in guiding these efforts with your opinions and support.
Trials are chugging forward. Never fast enough, but the data are accumulating. Expect T cell study reports next. LLS data and other results will be coming soon, which will provide some answers and raise even more questions.
I know it’s hard to be patient, but what choice do we have?
Stay strong. We are all in this together.
Brian Koffman MDCM (retired) MS Ed
Co-Founder, Executive VP and Chief Medical Officer
CLL Society, Inc.
