National Survey: At-Risk Patients Confused by Mixed COVID-19 Vaccine Messages

The nonprofit Alliance for Patient Access today released the results of a national survey of autoimmune patients on issues of COVID-19 vaccination, information sources and risk awareness. The survey report, "Autoimmune Disease & COVID-19 Information," summarizes 400 patients' responses, which were collected October 11-19, 2021. Participants included patients living with rheumatoid arthritis, multiple sclerosis, lupus, systemic sclerosis, Graves' disease and pemphigus.

Some medications for autoimmune diseases suppress the immune system, making patients more likely to develop serious illness if they contract COVID-19 and more likely to die from COVID-related complications. Not all patients recognize these risks or have clear information on how to protect themselves, however.

KEY FINDINGS

COVID-19 Risks
Only about half of patients reported being "very aware" that an initial vaccine regimen may not fully protect them and that they may need a third dose to improve their immune response.

• 50% were "unaware" or only "somewhat aware" that they may not be fully protected against COVID, even if fully vaccinated
• 58% were "very aware" of their need for a third shot, leaving 42% that were "unaware" or only "somewhat aware"

Vaccination Concerns
About three-fourths of respondents reported being vaccinated – 71% fully vaccinated and 3% partially vaccinated. About one-fourth, however, reported being unvaccinated. They cited:

• Concerns about vaccine safety and efficacy
• Concerns about vaccine side effects
• Concerns about flare-ups of their autoimmune disease
• Concerns about having to suspend treatment for their autoimmune disease to get the full benefit of the vaccine

Vaccine Confusion
Patients reported confusion about vaccine protocol.

• 47% were uncertain about whether they need a third vaccine dose or when to get it
• 51% were uncertain about the difference between a third dose and a booster
• 47% were uncertain if a third dose needed to be the same brand as the original series
• 86% said autoimmune patients need greater awareness about needing a third dose

Information Sources

• Patients (88%) reported that mixed messages from media and government muddled their understanding of how to proceed with vaccines
• Unvaccinated respondents who reported concerns about side effects were more likely to cite social media or family and friends as primary information sources and less likely to cite government or scientific websites

Needs Assessment
Patients reported wanting clearer vaccination guidance that was centralized and pertinent to specific autoimmune conditions. They also saw a need to empower health care providers as sources of up-to-date information on COVID-19 vaccination. Most respondents (89%) said government policies on vaccines should reflect autoimmune patients' unique needs.

STATEMENT FROM JOSIE COOPER, EXECUTIVE DIRECTOR, ALLIANCE FOR PATIENT ACCESS:
"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."

The report also featured on-the-ground insights from autoimmune patient advocacy organizations that participated in an online roundtable survey discussion hosted by the Alliance for Patient Access.

The report can be accessed online here.

The Alliance for Patient Access is a national network of policy-minded health care providers who advocate for patient-centered care and participate in clinician working groups, advocacy initiatives, stakeholder coalitions and the creation of educational materials.