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.
January 18th, 2021
There are several types of vaccines that are in development for COVID-19. It is almost certain that none will have large populations of patients with Castleman disease (CD) participating in the early clinical trials or that any data in this patient population will be reported. 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.
There is no evidence that CD patients are more vulnerable to infections than the general population, except for 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.
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.)
- 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/Asta-Zeneca vaccine, which carries fragments of the COVID-19 virus in a chimpanzee adenovirus, which has been rendered unable to divide. This type of vaccine is probably the least safe in persons with compromised immune systems, as there is a theoretical risk that the vaccine virus could mutate or replicate and cause disease in a vulnerable host. CD patients should await further guidance from regulatory authorities, scientists, and health care providers before receiving 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 (www.CDCN.org/ACCELERATE), 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: https://www.cdc.gov/vaccines/covid-19/info-by-product/clinical-considerations.html
This website also includes specific guidance for immunocompromised individuals and individuals with autoimmune conditions.
Additional notable links: