Powerful, illuminating and sobering—that’s the description from a research group summing up its initial listening sessions with front-line workers and minority groups about a vaccine.
Tasked with tapping key audiences to learn their questions and concerns about a COVID-19 vaccine—and determine how the FDA might best respond—the nonprofit Reagan-Udall Foundation for the FDA is currently in listening mode on the project, CEO Susan Winckler said.
The foundation is focusing on front-line workers, including healthcare and retail employees as well as traditionally underrepresented groups, including Black, LatinX and Native Americans.
During an FDA advisory panel meeting Thursday, Reagan-Udall researchers broke out six themes emerging from its initial work: concerns about the speed of the process, distrust in government, distrust in the healthcare system, worries that politics and economics are being prioritized over science, fears of differing vaccine effectiveness for different populations and fears based on past experience.
Winckler rolled out the initial findings at the FDA’s Center for Biologics Evaluation and Research vaccine ad committee meeting today, accompanied by slides of anonymous comments taken from the listening sessions.
“In presenting these quotes, we aspire to share the words of the listening session participants, but we do not intend to replace their individual voices with our own,” she said.
Honest and unvarnished, the comments reveal deep suspicions and fears about potential vaccines, the Centers for Disease Control and Prevention, the FDA and even pharma companies.
One commenter, for instance, noted that they wanted an organization they could trust to handle the vaccine, and that “has not been bought out by some big pharma.”
Another said: "When COVID first came out, I trusted the CDC website and was sharing from there. Now I trust the FDA and CDC much less than I did when this first came out."
Some of the most jaw-dropping comments came from people expressing fear and mistrust of a vaccine based on past experiences.
Wilks read from the last slide: “I firmly believe that this is another Tuskegee experiment,” and, “We are not going to be guinea pigs again.” The final comment? “The more they study me, the more they know how to get rid of me.”
Someone on the administration side of the call on microphone let out a long low whistle.
The next steps in the project will be to finish community listening by the end of the month and switch to work on messages in November. Reagan-Udall researchers will do message effectiveness testing and refinement with an eye toward rolling those out to the public in December.