TSC Alliance Issues Updated COVID-19 Vaccine Position Statement

August 18, 2021

The United States continues to face an unprecedented public health challenge during the COVID-19 pandemic with more than 617,787 lives lost in 18 months. Throughout this time frame, the global medical and scientific community has rallied together to address detection of the virus, learn and implement best practices in clinical care, and develop vaccines to prevent or lessen infection and serious symptoms. Three vaccines (Pfizer, Moderna, and Johnson & Johnson) have received emergency use authorization (EUAs) from the FDA to slow the spread of COVID-19 and improve the protection and outcomes of the public. ALL U.S. citizens 12 years of age and older are eligible for vaccination. At the time of drafting this document, over 167 million individuals (~50% U.S. population) have been fully vaccinated. Ongoing clinical trials will hopefully extend eligibility for those younger than 12 years of age in the coming months.

Take Home Messages

  • If you have not yet received a COVID-19 vaccine, get vaccinated as soon as possible, even if you have already had COVID-19 infection.
  • You do not need a prescription by your physician to get the vaccine.
  • If you are currently taking Everolimus or Sirolimus for TSC, stay on these medications unless otherwise directed by your TSC clinician(s).
  • If you are currently taking Everolimus or Sirolimus for TSC, and you have already received two doses of COVID-19 mRNA vaccine (Pfizer or Moderna), you are eligible for an additional, third dose of the vaccine, a “booster” vaccine.
  • The TSC Alliance recommends a third vaccine dose for TSC individuals currently treated with Everolimus or Sirolimus who have previously received either the Pfizer or the Moderna vaccines.
  • The current recommendations are to receive the same kind of vaccine for the third dose that you received for the first two doses i.e., Pfizer for Pfizer, Moderna for Moderna). Mixing vaccines is permitted if same vaccine type is not available.
  • There is no recommendation yet regarding an additional dose for those individuals who have received a single dose vaccine such as the Johnson and Johnson vaccine.


Additional Resources and Recommendations

As the COVID-19 pandemic persists and new variants are emerging such as the Delta variant, we will continue to update and provide accurate information to the community. Variants such as Delta are proving that reinfection and breakthrough cases are possible, even in the vaccinated population. This stresses the importance that we keep our community safe. Despite showing breakthrough COVID-19 cases, those who are vaccinated are having less severe and fatal consequences with quicker recovery times. Many geographical areas are facing unprecedented hospitalization records across pediatric and adult hospitals. More than ever, the TSC community must remain diligent with prevention measures.

Antibody testing after vaccination is not clinically necessary unless advised by a specialist. For those who wish to know their antibody response, we urge them to discuss with their local healthcare team to determine whether and how to be tested. Those who are already enrolled in the TSC Alliance Natural History Database and have had antibody testing and wish to have your antibody testing including in the study, please contact Dr. Gabrielle Rushing, PhD, at grushing@tscalliance.org.

Medical Review Note

This information was reviewed and approved by:

  • Peter B. Crino, MD, PhD, Chair, TSC Alliance Board of Directors
  • Darcy A. Krueger, MD, PhD, Chair, TSC Alliance Professional Advisory Board
  • Mustafa Sahin, MD, PhD, Chair, TSC Alliance International Scientific Advisory Board and Co-Chair, TSC Alliance Science and Medical Committee
  • John J. Bissler, MD, TSC Alliance Professional Advisory Board
  • Nishant Gupta, MD, Director of LAM Clinic Network
  • Elizabeth Thiele MD, PhD, Massachusetts General Hospital
  • Joel Moss, MD, PhD, TSC Alliance Professional Advisory Board
  • Elizabeth Petri Henske, MD, TSC Alliance Professional Advisory Board

For additional questions or concerns please reach out to Ashley Pounders MSN, FNP-C, TSC Alliance Director, Medical Affairs at apounders@tscalliance.org or 240-472-4302.


This content was created for general informational purposes only. The content is not intended to be a substitute for professional medical advice. The risk profile for each individual is unique, and immunity from COVID-19 may be affected by factors such as age, chronic health conditions, and other medications. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding these recommendations.