Autoimmune Patients Want Clearer COVID-19 Vaccine Info

Patients with autoimmune diseases, including multiple sclerosis (MS), are uncertain about how to protect themselves against COVID-19, especially with regards to booster shots of the vaccine.

According to a national survey by the nonprofit Alliance for Patient Access, these patients are confused due to conflicting information from the media and government sources regarding COVID-19 vaccination. In the survey, patients expressed their desire for vaccine information directed toward their specific disease needs.

“Forty-one million Americans live with some form of autoimmune disease. We hope these survey results can help policymakers deliver what patients say they need: clear, trustworthy health and vaccine information that speaks to their specific patient population,” Josie Cooper, executive director of the Alliance for Patient Access, said in a press release.

The survey report, “Autoimmune Disease and COVID-19 Information,” summarizes the responses of nearly 400 people with various autoimmune conditions, including rheumatoid arthritis (60%), MS (17%), Graves’ disease (10%), lupus (10%), systemic sclerosis (2%), and pemphigus (1%). The information was collected between Oct. 11–19.

Some medications used in the treatment of autoimmune conditions suppress the immune system, making patients more likely to develop serious illness if they contract COVID-19. However, based on the survey results, some patients do not recognize this risk or have no clear information about how to decrease their risk.

The survey found that 50% of patients were “very aware” the initial vaccine regimen may not fully protect them from COVID-19 and that they may need another dose to improve their immunity. Additionally, 58% of patients with autoimmune conditions were “very aware” of their need for a third dose, while 42% of them were “unaware” or “somewhat aware” about their need for a third shot.

Nearly 71% of the respondents indicated they were fully vaccinated, and 3% were partly vaccinated. The remaining 26% reported being unvaccinated due to various concerns, including about vaccine safety and efficacy, vaccine side effects, autoimmune disease flare-ups following vaccination, or the need to suspend treatment for their autoimmune condition to obtain the full benefits of vaccination.

Concerning MS in particular, Julie Fiol from the National MS Society stated in the report “We get a lot of questions around how to time the vaccine shots with the medications patients use to manage their MS.”

Additionally, patients reported confusion about the appropriate vaccine protocol, with 47% of them being uncertain about whether they need a third vaccine dose and when to get it. A majority of patients, 51%, were uncertain about the difference between a third dose and a booster, and 47% were unsure if the third dose needed to be the same brand as the initial series.

A vast majority of the patients surveyed, 86%, felt that autoimmune patients require greater awareness about their need for a third dose.

Regarding information sources, 88% of the patients reported that the mixed messages from media sources and the government lead to confusion about how to proceed with vaccines. Among unvaccinated respondents who had concerns about side effects, they were more likely to cite either family and friends or social media as their primary sources of information, as opposed to government and scientific websites.

“One reason for the lag in vaccination could be conflicting information. Constant and evolving messages about COVID-19 and vaccination can overwhelm and frustrate patients,” the report states. “Patients’ choice of information sources may impact their perception of vaccine risks.”

Overall, the patients surveyed reported a desire for more centralized, clearer vaccination guidance for their specific autoimmune conditions, with 89% of patients saying that government policies on vaccination should reflect autoimmune patients’ unique needs. The respondents also see a need to empower healthcare providers as sources of up-to-date information on COVID-19 vaccination.

On Nov. 3, several patient organizations representing those living with autoimmune diseases met online to discuss the survey results  and the challenges faced by patients and their families during the COVID-19 pandemic. The Multiple Sclerosis Foundation and the National MS Society participated in this meeting.