International Waldenstrom’s Macroglobulinemia Foundation



In early March 2020, the global IWMF community was just beginning to learn about the impact of the COVID-19 pandemic and how best to protect oneself against the virus. At that time, the IWMF distributed periodic messages over several months as more was learned about the disease and about effective methods of protection against it.

An opportunity for a return to normalcy came about in December of that year with the emergence of various effective COVID-19 vaccines. Yet, a year later, the world is still gripped by the transmission and spread of the virus and its variants, and we are seeing hospitals overwhelmed by COVID patients.

As we near the end of 2021, another sign of promise for the immunocompromised community is the emergence of newer treatments for COVID-19. It is hoped that further research will bring about more effective mechanisms and protocols for both vaccinations and for treatment of the disease in the next few months.

On December 22-23, 2021, the US Food and Drug Administration announced the first oral antiviral treatments for COVID-19 infection, Paxlovid and Lagevrio. However, these pills may be contraindicated for those currently being treated with cancer drugs that inhibit certain enzymes (including BTK inhibitors), and one may have to take a “treatment holiday” from such inhibitors while being treated with Paxlovid or Lagevrio. In such situations, it is critical to confer with your hematologist in this regard and to do so quickly, as COVID treatment with oral antivirals must be administered early after symptom onset to be effective. In addition, there are several monoclonal antibody treatments available via infusion (the United States Department of Health and Human Services explains them further and where they are currently available in the US at this website. Those outside the US should seek out information pertaining to what their country may have available).

In the meantime, the messaging from the medical community for everyone remains as follows:

  • Get vaccinated. Be aware, however, that patients currently undergoing treatment regimens that include rituximab or other anti-CD20 monoclonal antibodies will not obtain a response from vaccinations until 6-9 months after completing such treatment. Additionally, those taking BTK inhibitors may not achieve a good immune response. Regardless, it is highly suggested to get vaccinated, as it is better to have a minimal response than no protection at all.
  • Get a third additional primary shot and a booster shot when eligible. (See caveats above.)
  • Understand how to get a fast COVID test because you have only five days in which to receive pills and ten days in which to receive monoclonal antibody treatments after onset of symptoms. Generally, you also must allow one day for a PCR test result, and treatment centers that administer monoclonal antibodies may also require two-three days to evaluate. Practically speaking, you have a narrow window—don’t waste that time if you believe your life depends on it.
  • Find out in advance where COVID treatments are being offered near you.
  • Keep abreast of guidelines regarding safe hygiene practices, vaccinations, and treatments, especially as they pertain to your country, region, state, or province. We encourage all patients, caregivers, and families impacted by WM to remain vigilant and to follow the daily health and sanitary precautions and the travel guidelines being promoted by major public health agencies like the World Health Organization (WHO) and the US Centers for Disease Control (CDC). Current guidance for most of those in the IWMF community can be found at:
  • If you’re immunocompromised, continue to practice appropriate social distancing protocols based on your health condition, particularly if you know whether you’ve had an antibody response to the vaccines:
    • Wash hands regularly.
    • Wear masks when venturing out in public (N95 or KN95 masks are considered more effective).
    • For gatherings with family and friends, ensure that everyone is vaccinated and follows appropriate social distancing guidelines; if unsure, have everyone wear masks while indoors. If possible, perform a rapid antigen COVID test right before attending.
    • Make sure your medical providers are keenly aware of your situation and the appropriate treatments for you, should you get infected.
    • Keep a close eye on your health and be on the lookout for any COVID-19 symptoms.
      • Consider getting a pulse oximeter to check oxygen levels and a thermometer to monitor your body temperature
      • Acquire some COVID-19 antigen rapid self-test at home kits.
      • If you are infected, seek treatment immediately–don’t put it off, as many of the treatments available now work best if administered early in the course of the disease.
      • If you are infected, make sure your treating doctors are aware of the best treatment to use for immunocompromised patients and for the dominant variant in your area.

The IWMF wishes to extend its concern and support to everyone around the world who is affected by COVID outbreaks. Our hope continues to be for an effective resolution of this crisis that will benefit everyone around the world, especially those who are immunocompromised.

Stay Safe – Stay Healthy – Stay Waldenstrong!

Pete DeNardis, Chair, IWMF Board of Trustees
Newton Guerin, CEO, IWMF


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