Guidance on COVID-19 vaccination for Castleman disease patients

Guidance from the CDCN Scientific Advisory Board members on COVID-19 vaccination for Castleman disease patients

This letter is not the official policy of the CDCN or the members of its Scientific Advisory Board, but it is the best advice we have to give at this time. We have been receiving countless telephone calls and emails from worried parents and other loved ones.

The CDCN SAB continues to review relevant data in real-time and will make updates to this guidance as needed

Guidance updated on January 10th, 2022

There are three COVID-19 vaccines currently available in the US and several others available around the world and in development for COVID-19. None of these vaccines have been studied in large populations of patients with Castleman disease (CD). Thus, clinicians and CD patients must rely on extrapolating from what is known about each vaccine technology to make recommendations about vaccine safety and use in patients with CD.

Preliminary research performed by members of the CDCN utilizing data from the ACCELERATE registry suggests that CD patients are not likely at increased risk of adverse events with COVID-19 vaccination:

CD patients may be more vulnerable to infections than the general population, especially those with HHV-8-associated MCD, and for CD patients who are being actively treated with steroids, immune modulators, biologics such as antibodies, or chemotherapy. The guidance from the Scientific Advisory Board for the CDCN is that all CD patients consult with their medical teams about their eligibility for vaccination against COVID-19 and receive a vaccine as soon as they are eligible if their medical providers believe it is safe.

Regarding boosters, the guidance from the Scientific Advisory Board is that everyone with CD having received treatment or currently on treatment for their CD should get a booster. If CD patients are not currently on any therapy, they should discuss getting a booster with their physicians and follow CDC guidelines regarding booster shots depending on their risk factors.

To the extent that patients with CD have a choice as to the type of vaccine they can receive, the following principles should be considered:

  • The timing of any vaccine administration should be coordinated alongside treatment of CD such that the administration would be predicted to allow for the maximal immune response (i.e. following immune recovery after chemotherapy, during a period of steroid pause or taper, etc.) The efficacy of vaccines in persons with weakened immune systems, especially those undergoing immune-modulating therapy (steroids, biologics, chemotherapy), is typically lower than in the healthy population. While no studies have been done to determine the efficacy of COVID vaccines in persons with CD, patients undergoing immune-modulating therapies should anticipate a lower vaccine response and continue to take other measures (masking, hand hygiene, social distancing) to protect themselves from infection in settings where SARS-CoV-2 is prevalent.
  • There is a study underway currently assessing the ability for patients with a number of diseases, including CD, to mount antibody responses following the COVID vaccine. You can sign up directly here and the researchers will coordinate with you for a blood sample to be drawn. The results of the tests will be returned to you.
  • RNA vaccines (i.e. Pfizer and Moderna) have never been previously approved for use in humans. Their use in COVID-19 is the first large-scale application of this type of vaccine, However, based on preliminary data released in Phase 1-Phase 3 studies, they appear to be safe and well-tolerated and have been authorized for use in the USA, UK, European Union, and other countries. Furthermore, the mechanism of action of these vaccines suggests that they will be both safe and effective in patients with CD.
  • Inactivated virus (I.e. Bharat biotech) and protein-based vaccines (i.e. Novavax, GSK-Sanofi, etc.) have been widely used in humans and are likely to be safe but the readout of phase III studies is presently pending.
  • Live vaccines (Oxford/Astra-Zeneca, Johnson and Johnson, Merck) have only been used in a small number of humans prior to COVID-19. An example is the Oxford/Astra-Zeneca vaccine, which carries fragments of the COVID-19 virus in a chimpanzee adenovirus, which has been rendered unable to divide.  While there is a theoretical risk that the vaccine virus could mutate or replicate and cause disease in a vulnerable host, this is unlikely and our panel of experts believes that the benefits of protection from the vaccine outweigh the very small risk of the vaccine virus gaining the capacity to replicate and cause harm. CD patients should discuss the benefits and risks of this type of vaccine with their doctor or other health care provider and follow guidance from regulatory authorities related to this type of COVID-19 vaccine.

It is also important to remember that vaccines typically cause mild flu-like symptoms and pain at the site of the injection for a few days. This is normal and to be expected.

Lastly, we hope that all CD patients will consider joining the ACCELERATE Natural History Registry (, including all CD patients who have experienced COVID-19 or received a COVID-19 vaccine. Taking 15-20 minutes to enroll in ACCELERATE enables the medical community to be able to better understand CD, CD treatments, and the impact of co-morbidities like COVID-19.

With our best wishes to you all,

CDCN Scientific Advisory Board (several of which have already gotten the vaccine and the rest of us plan to receive it as soon as we’re able to)

The general guidance for use of currently authorized COVID-119 vaccines can be found at:

This website also includes specific guidance for immunocompromised individuals and individuals with autoimmune conditions.

Additional notable links:

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