CLL Society has heard untold stories from those who have been denied access to potentially lifesaving COVID-19 vaccines, monoclonal antibodies (including EVUSHELD), and antivirals (such as Paxlovid). Nearly every story reflects the same theme: “I was denied because the definition of who is considered immunocompromised from the NIH and other federal agencies only mentions blood cancer patients who are undergoing active therapy, and I’m not currently on any treatment.”
CLL Society recognized from the start of the pandemic that due to CLL/SLL being a cancer of the immune system, and those with CLL/SLL being immunocompromised at all stages of their cancer journey (even when not undergoing active therapy), that the previous definition outlining who should be considered immunocompromised was a barrier.
After more than a year of relentless advocacy work behind the scenes with numerous government agencies and doing our very best to raise public awareness through media outlets (including Dr. Koffman often appearing in the news), the NIH has officially updated its definition of the immunocompromised to specifically include those with CLL!
Their updated guidance released on 8/8/22, COVID-19 Treatment Guidelines: Special Considerations in People Who Are Immunocompromised, now reads:
“This section pertains to people who are moderately or severely immunocompromised, which includes those who:
- Are receiving active treatment for solid tumors and hematologic malignancies.
- Have hematologic malignancies (e.g., chronic lymphocytic lymphoma, non-Hodgkin lymphoma, plasma cell dyscrasias) and are known to have poor responses to COVID-19 vaccines or an increased risk of severe COVID-19, regardless of the treatment status for the hematologic malignancy.”
The new language in the second bullet is almost word for word what CLL Society requested it to be in our multiple meetings with those at the NIH.
This is a huge and hard-fought win for our community! CLL Society has put in countless hours behind the scenes leveraging our credibility, highlighting the strong scientific underpinnings of our ask, utilizing the power of our community’s voices, and called upon our many strong partnerships to help us lead this effort.
Many pitched in on this effort. But we would like to give a special shout-out to our friends and fellow advocates at TRAIPAG (Transplant Recipients Immunocompromised Patient Advocacy Group) and CLLAN (CLL Advocates Network) for their incredible advocacy work on this as well. We believe the definition change would never have happened without our advocacy team’s countless hours spent on this initiative for well over a year.
We now need for the CDC, FDA, ASPR, and other agencies to follow suit and reflect the exact NIH change in their definition of the immunocompromised. But most importantly, we need every healthcare provider and every healthcare system to now recognize the special needs of the immunocompromised community. We still receive almost daily reports from CLL/SLL patients across the country who are being denied the preventative monoclonal antibody Evusheld, vaccine boosters, and other COVID-19 treatments that they so desperately need.
CLL Society will continue to be laser-focused on the needs of those whose lives have been impacted by CLL/SLL. We will continue to advocate on the behalf of our community within government agencies such as the FDA, CDC, NIH, CMS, and Capitol Hill to make sure our voices continue to be heard.