Autoimmune Patients Want Clear, Actionable Information on COVID-19

Conducted by the European Alliance for Patient Access, the online survey captured responses from autoimmune patients living in Germany, France, U.K., Italy and Spain. Questions about COVID-19, risk awareness and vaccination revealed that autoimmune patients need health information tailored to their specific condition and the medication they take to manage it.

Some medications for autoimmune disease suppress the immune system, leaving patients with a higher risk of developing severe COVID-19 or breakthrough cases.

Key Findings

Patients reported confusion on various vaccination topics, and their responses identified a clear need for customised information.

COVID-19 Exposure and Risks

While 81% of patients said they knew someone who contracted COVID-19, that exposure does not equate to understanding the risks they face.

• Only 37% were very aware that, by taking medications that weaken their immune system, they may not be fully protected from COVID-19 even if they are fully vaccinated.
• Only 28% were very aware that immunocompromised people who contract COVID-19 are more likely to transmit the virus to household contacts.

Vaccine Concerns

While the majority of patients reported being fully vaccinated, the of patients who were partially vaccinated or unvaccinated still expressed concerns. Reasons for not being vaccinated included:

• Concerns about side effects or safety
• Concerns about triggering a flare-up
• Concerns about potentially having to suspend autoimmune disease treatment

Vaccine Confusion

Patients’ responses highlighted confusion around vaccine brands, boosters and third doses.

• 41% are uncertain about whether they need a third vaccine dose or when to get it.
• 59% are uncertain about the difference between a third vaccine dose and a booster.
• 58% don’t understand if a booster is needed after a third dose.
• 48% don’t understand if a third vaccine dose needs to be the same brand.

Across the board, patients expressed that the information they were receiving about COVID-19 vaccinations was often confusing.

• 85% said mixed or unclear messages from the media and government complicate decisions about vaccination.

Needs Assessment

Patient responses throughout the survey highlighted a desire for personalised care.

• 82% want to explore which medications for their condition are most compatible with COVID-19 vaccines.

When patients were given the opportunity to share ways for policymakers to best support autoimmune patients, many reported wanting clear, correct and concise information that is centrally located and tailored to individual conditions and medications. They also underscored the importance of working with informed health care providers to navigate life as COVID-19 becomes endemic.

International patient advocacy organisations participated in a virtual roundtable discussion of the survey results, where they said that the findings resonated with them. Their insights are highlighted throughout the report.

About the Report

The survey ran January 12-24, 2022 and collected responses from patients living with rheumatoid arthritis, lupus, multiple sclerosis, systemic sclerosis, pemphigus and Graves’ disease.

Explore the comprehensive survey findings in EAfPA’s full report, “Autoimmune Disease & Covid-19 Information.”