LRA survey: Two-thirds of people with lupus are willing to take COVID-19 vaccine

Reviewed by Emily Henderson, B.Sc.Dec 16 2020

Two out of three people with lupus (64%) are willing to take a COVID-19 vaccine if it is free and determined safe by scientists according to results of a survey conducted by the Lupus Research Alliance (LRA). However, it is important to note that 24% say they would not take the vaccine while 22% are uncertain.

Conducted October 19 - November 17, the national survey included 703 people with lupus and 63 of their family members and friends. Respondents represented all 50 states, the District of Columbia, Puerto Rico and the Virgin Islands.

Those who would get the vaccine are just as motivated by wanting to protect others (97%) from the virus as they are about protecting themselves (98%). This finding is particularly poignant as the lupus population is considered more vulnerable to COVID-19 because their immune systems are weakened by the disease and many of its treatments.

Other reasons that would influence all respondents with lupus in deciding whether to take the vaccine include having information about the vaccine's safety specifically for people with lupus and a recommendation by their healthcare provider. As could be expected, a higher proportion of those who already usually take a flu vaccine are more likely to say they would get a COVID-19 vaccine.

Although many respondents are willing to take a COVID-19 vaccine, only half of all respondents surveyed have confidence in the process used to test their safety and effectiveness. Of those who say they would not take the vaccine, 90% worry about side effects and 86% fear a lupus flare. In open-ended questions, many expressed similar concerns because they think the safety has not been shown over a long-enough time. The fairness of the vaccine distribution is also questioned by 59% of respondents with lupus and 43% of those without lupus.

Attitudes differ by race/ethnicity

• Black or African Americans with lupus are less likely to say they would definitely or probably get a COVID-19 vaccine (34%) versus 50% of all Black/African Americans in the general population.
• Hispanics/Latinos are most likely (34%) to say they are undecided about taking the vaccine.
• Confidence in safety and effectiveness testing varies by race and ethnic background with Blacks (75%) being the least confident.

The U.S. Food and Drug Administration (FDA) just granted emergency use authorization to Pfizer Inc. and BioNTech SE for their COVID-19 vaccine which uses a new technology, mRNA. With this designation, the FDA "may allow unapproved medical products or unapproved uses of approved medical products to be used in an emergency to diagnose, treat or prevent serious or life-threatening diseases or conditions caused by chemical, biological, radiological, or nuclear threat agents when there are no adequate, approved and available alternatives."

We are very pleased to see these vaccines become available. The experts on our Scientific Advisory Board have reviewed the data made public so far, and the vaccines do not seem to pose a particular concern for people with lupus. However, whether or not to take this or any vaccine is a decision that must be made between the patient and their healthcare provider."

Kenneth M. Farber, LRA President

The LRA is keeping abreast of the evolving vaccine status. To learn more about the different types of technologies used to develop these vaccines, watch this video of LRA President & CEO Kenneth Farber. Also, this Q&A provides answers to common questions we're hearing about vaccines amid the COVID-19 pandemic.

Lupus facts

Lupus is a chronic, complex autoimmune disease that affects millions of people worldwide. More than 90% of people with lupus are women; lupus most often strikes during the childbearing years of 15-45. People of African American, Hispanic, American Indian and Asian descent are two to three times at greater risk than White Americans. In lupus, the immune system, which is designed to protect against infection, creates antibodies that can attack any part of the body including the kidneys, brain, heart, lungs, blood, skin, and joints.