This is the sad story of an otherwise well 61-year-old father living a healthy lifestyle since being diagnosed with CLL just over a year ago. Sadly, he died after he went out in public without a mask near Tampa, Florida. In August 2021, Tampa was a community where the prevalence of COVID-19 was very high, and mask-wearing was very low.
He had otherwise been cautious and doing all the right things such as social distancing and wearing a mask. But once he became fully vaccinated, he felt safe enough to enjoy going maskless once again and not needing to social distance with family, friends, or even when grocery shopping.
Unfortunately, he was wrong.
His son Mike is quoted saying: “…what ended up killing him was that he didn’t know the vaccine wouldn’t be effective for him.” He goes on to say: “I really believe that if he had just one conversation, whether it be with a family member or his medical provider, that the vaccine may not be efficient for him, that he wouldn’t produce the antibodies, that there’s no question in my mind that he would have gone back to life the way it was before the vaccine came out.”
I would add to Mike’s list of “what ifs” that would have informed his father, a visit to our website where we address this concern head-on in this article: CLL Society’s Recommendations for COVID-19 Vaccinated Chronic Lymphocytic Leukemia (CLL) Patients-Based Upon the CDC’s Updated Considerations for People Who Are Immunocompromised in the belatedly update in July’s CDC’s guidelines themselves. Had he read our advice and those of many other CLL experts, he would have known to be more careful and probably still be with his family.
So sad.
Here are my take-aways from this preventable loss:
- COVID-19 picks on the most vulnerable. Fully vaccinated immunocompromised get many more breakthrough infections, get sicker, are hospitalized, and die more often with COVID-19 than those with normal immunity.
- Vaccinated chronic lymphocytic leukemia and other immune-compromised patients must act as if they are not protected by immunization.
- We need to better educate the CLL community about their risk. In the UK, it was found that 80% of blood cancer patients were not informed by their providers that the vaccines might not protect them.
- Help the CLL Society and others to get the word out by sharing both what we know and don’t know about COVID-19, by pointing people to physician curated reliable sources of information. Support our efforts to support, educate, advocate and research to help those whose lives are touched by CLL.
- Move forward to find and authorize better ways to protect our vulnerable community that may not be protected by vaccines, such as “passive immunity” using anti-COVID-19 monoclonal antibodies.
- Encourage those with healthy immune systems to get vaccinated. And in the year of Delta variants and beyond, wear a mask in all high exposure settings, regardless of vaccination status.
Here is a link to the story.
My heart goes out to his family and friends. We are grateful to Mike for his heartfelt and articulate sharing of his father’s story and for him using his family’s loss to try and help others who are immunocompromised.
In ways that I never would have wished, this tragedy brings home our motto: Smart Patients Get Smart Care.
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.
