Navigating the Ongoing Pandemic

Over the past two years, our community has faced enormous changes and challenges caused by the global pandemic. As we have learned more about the virus, we have endeavored to bring you timely updates and information from our Medical & Scientific Advisory Board (MSAB) and government resources.

While everyone 12 years of age and older is now eligible to get a free COVID-19 vaccination, it’s important to weigh our knowledge about the virus, vaccines, and evolving safety guidance with the risks for those with scleroderma.

Guidance from the Scleroderma Foundation Medical & Scientific Advisory Board’s Leadership Committee

The Scleroderma Foundation’s MSAB Leadership Committee agrees with the CDC guidelines for those who have a condition or are on medications that weaken the immune system. They strongly recommend that people diagnosed with scleroderma who are receiving immunosuppressive therapies such as mycophenolate mofetil and rituximab, or who have had a solid organ transplant, as well as those who live with them continue to wear well-fitting face masks, practice social distancing, avoid crowds and poorly ventilated indoor spaces, and use diligence in frequent hand washing. Learn more about how you can protect yourself and others at https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/prevention.html.

Updated Guidelines for Mask Wearing from the CDC

The Centers for Disease Control and Prevention (CDC) updated their recommendations for mask wearing on February 25, 2022. The updated guidance recommends that you review your community’s risk level and proceed with appropriate precautions accordingly. COVID-19 Community Levels are a tool to help communities decide what prevention steps to take based on the latest data.

The CDC guidance suggests that layered prevention strategies — like staying up to date on vaccines and wearing masks — can help prevent severe illness and reduce the potential for strain on the healthcare system. 

Look up your county’s risk level online at https://www.cdc.gov/coronavirus/2019-ncov/your->> health/covid-by-county.htm.

  • Those in low-risk communities should wear a mask based on their personal preference, informed by their personal level of risk.
  • Those in medium-risk communities who are immunocompromised or at high risk for severe illness, should talk to their healthcare provider about additional precautions, such as wearing masks or respirators indoors in public. If you live with or have social contact with someone at high risk for severe illness, consider testing yourself for infection before you get together and wearing a mask when indoors with them.
  • Those in high-risk communities should wear a well-fitting mask indoors in public, regardless of vaccination status or individual risk (including in K-12 schools and other community settings). If you are immunocompromised or at high risk for severe illness, you should wear a mask or respirator that provides you with greater protection.

Updated Guidelines for Vaccines for Immunocompromised People from the CDC

If you are moderately or severely immunocompromised (have a weakened immune system), you are at increased risk of severe COVID-19 illness and death. CDC recommends that you complete your primary series of COVID-19 vaccines if you are 5 years and older, and if you are 12 years or older, get a booster. Because the immune response following COVID-19 vaccination may differ in people who are moderately or severely immunocompromised, specific guidance has been developed.

  • Children ages 5 through 11 years who are moderately or severely immunocompromised should receive a primary series of 3 doses of Pfizer-BioNTech COVID-19 vaccine. A booster is not recommended for this age group at this time.
  • People ages 12 years and older who are moderately or severely immunocompromised should receive a total of 4 doses of COVID-19 vaccine.  The 4 doses are made up of a primary series of 3 doses of an mRNA COVID-19 vaccine, plus 1 booster of an mRNA COVID-19 vaccine (4th dose).

As the leading patient advocacy organization for the scleroderma community, the National Scleroderma Foundation takes seriously its responsibility to act in an abundance of caution. Although there are now fewer restrictions on gatherings in the US, there remains an inherent risk. As a community we want to ensure that we are keeping each other safe while actively assessing our policies and practices.

The Foundation continues to offer programs, services, and educational events in virtual formats until there is more data on the efficacy of vaccines for immunosuppressed individuals. While outdoor walks have resumed, Foundation-sponsored indoor meetings of any kind are still prohibited.

We encourage you to view the full CDC guidelines at: https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html.

Guidance from the American College of Rheumatology (ACR)

Additional information for individuals who have rheumatic and musculoskeletal diseases is available in version 5 of the American College of Rheumatology’s COVID-19 Vaccine Clinical Guidance Summary for Patients with Rheumatic and Musculoskeletal Diseases (https://www.rheumatology.org/Portals/0/Files/COVID-19-Vaccine-Clinical-Guidance-Rheumatic-Diseases-Summary.pdf).  This document was developed by the ACR COVID-19 Vaccine Clinical Guidance Task Force and was revised February 2, 2022. 


Please note that the CDC and other public health organizations are continually monitoring COVID-19 data in terms of infection rates, hospitalizations, treatment effectiveness, and more.  More data provides a better understanding of a constantly changing situation, and new guidelines and recommendations are frequently published to reflect those changes.

Thank all of you for your continued support of the Scleroderma Foundation’s mission. We owe a huge debt of gratitude to our chapter and support group leaders and volunteers, as well as to our members and donors who continue to invest in our mission of hope.


Mary J. Wheatley, IOM, CAE
Chief Executive Officer

Published March 2, 2022