Smart Patients Get Smart Care™

The World’s Leading Authority for Chronic Lymphocytic Leukemia Patients

What We Know and Don’t Know About COVID-19 and Other Infections for Those with CLL

In science and medicine, information is constantly changing and may become out-of-date as new data emerge. All articles and interviews are informational only, should never be considered medical advice, and should never be acted on without review with your health care team.

Authored by: Dr. Brian Koffman

Updated November 2023

Here is a list of personal reflections on what we know and don’t know about COVID-19 and other infections that all immunocompromised folks might want to consider moving forward into the brave new world of increased respiratory infection risk. They certainly inform how I behave and make decisions.

Immunity and Vaccination in CLL

  1. All chronic lymphocytic leukemia (CLL) patients, regardless of their treatment status, are immunocompromised to some extent.
  2. Certain treatments, especially B cell-depleting therapies such as rituximab, obinutuzumab, and many others, increase immune suppression.
  3. Generally, the greater the disease burden, the worse the immune suppression.
  4. All vaccines are less effective in those with CLL.
  5. Despite #4 above, many CLL patients do have some response to the COVID-19 vaccine, and there is strong evidence that most respond better with repeated doses.
  6. Antibody levels to the spike protein after vaccination are not the whole story. T-cell response, which is harder to measure, is important in preventing severe disease and can be independent of the antibody (humeral) response.
  7. CLL patients who become infected and vaccinated have better outcomes than those who are not.
  8. Vaccinations reduce the risk of long COVID-19 in the general population and likely also in those with CLL.

COVID-19 Infections in CLL

  1. The incidence of COVID-19 infections, the rate of hospitalizations, and the risk of death have all fallen dramatically for CLL patients, likely for three reasons:
    • The virus has mutated and become less dangerous, causing more upper respiratory than lower respiratory infections.
    • Treatments are much better.
    • Most CLL patients have some immunity through vaccination or prior infection.
  2. CLL patients still have a higher risk of hospitalization and death when infected by COVID-19 compared to the general population.
  3. With very few exceptions, CLL patients who become infected should move quickly to be treated, usually with Paxlovid, but other good options are available for those who can’t tolerate Paxlovid.
    • Paxlovid interacts with several medications, including several used to treat CLL.
  4. CLL patients have a higher risk of having prolonged infections with ongoing viral replication and shedding that requires more than one course of therapy.
  5. CLL patients have a higher risk of developing long COVID-19.
  6. Treatment with Paxlovid reduces the risk of long COVID-19.

The COVID-19 Pandemic Now and in the Future for the CLL Community

  1. COVID-19 is not going away. Ever.
  2. Other respiratory infections, such as the flu and RSV, are still around and dangerous.
  3. Except for those immunocompromised (IC), as are CLL patients, the world has largely moved on from COVID-19.
  4. Nearly no one except the IC is wearing a mask.
  5. N95 masks work very well in preventing respiratory infections.
  6. Good ventilation is critical in lowering respiratory infection risk.
  7. The virus so far has moved faster than our preventative measures, including new vaccines or Pre-Exposure Prophylaxis (PrEP) with monoclonal antibodies. Still, there is much good work going on to change that.

Final Take-Aways on Infections for CLL Patients

  1. Infection risks rise and fall with local prevalence rates and each CLL patient’s immune status and attention to preventive measures.
  2. CLL Society recommends that you stay up to date with vaccinations, mask up with an N95, and take appropriate precautions, especially in poorly ventilated indoor spaces.
  3. We now know at this point in the pandemic that the more doses of vaccines those with CLL and SLL receive, the higher the chance of mounting an antibody response. So even if you were one of those who didn’t respond very well to the earlier few doses, you should still consider obtaining the recommended number of boosters for those who are immunocompromised.
  4. Decide what risks you are willing to take. COVID-19 is here to stay. Though the risk of dying from a SARS-CoV-2 infection is much lower (around 1%), there will never be a time when it’s 100% safe for CLL patients.

Some of these facts could and probably will change, but those are my reflections on the present reality late in 2023.

Stay strong. We are all in this together.

Brian Koffman MDCM (retired), MS Ed
Co-Founder, Executive VP, and Chief Medical Officer
CLL Society

CLL Society - COVID-19

When appropriate, the CLL Society will be posting updates and background information on the present Coronavirus pandemic focusing on reliable primary sources of information and avoiding most of the news that is not directly from reliable medical experts or government and world health agencies.