Survey: Patients with Rare Diseases Hesitate Over Quickly Approved COVID-19 Vaccines

A new survey suggests that some populations at highest risk for serious illness from COVID-19 could also be hesitant to take a vaccine created to protect them.

Survey results from EveryLife Foundation for Rare Diseases showed significant numbers of patients with rare diseases were unsure about the safety of COVID-19 vaccines approved under Emergency Use Authorization (EUA) versus vaccines that have gone through traditional vetting by the U.S. Food & Drug Administration (FDA).

Caregivers of adults and children with rare diseases were similarly wary of EUA vaccines, the survey found.

The survey was operated by EveryLife Foundation for Rare Diseases, a 501(c)(3) non-profit organization, and the Community Congress COVID-19 Response Working Group. During the Oct. 20-Nov. 4, 2020, survey period, 1,479 responses were received. Sixty-two percent of respondents identified themselves as rare disease patients, while 34 percent were caregivers to adults or children with rare diseases, and 4 percent described themselves as rare disease patients who are also caregivers for others with rare diseases.

The largest group of respondents (31.93 percent) reported having autoimmune disorders, while 19.73 percent have neurologic disorders, 19.58 percent have neurodegenerative disorders, and 17.62 percent have musculoskeletal/connective tissue disorders.

Hesitation over EUA vaccines doesn’t apply to all types of vaccines. Of respondents who say they are medically able to take vaccinations recommended by the Centers for Disease Control (CDC), 77 percent said they receive all those immunizations, while another 14 percent said they make case-by-case decisions based on the vaccine.

In the survey, respondents said they were six times more likely (47.5 percent) to take a vaccine approved via traditional FDA channels than to take a vaccine with Emergency Use Authorization (7.9 percent). And at the time of the survey, more than half (55.1 percent) had not decided whether or not to take a vaccine that had emergency approval.

Caregivers for adults with rare diseases were even less likely to take an EUA vaccine: 58.8 percent said they’d be unlikely to do so.

That’s significant, EveryLife Foundation pointed out, because all COVID-19 vaccines currently available in the United States have been approved through EUA channels rather than the traditional approval process, which typically takes much longer to complete.

Respondents were asked the single most important factor in deciding whether they would take a new vaccine or not. “Participants most often discussed the importance of safety, efficacy, and/or concern about side effects of the vaccine,” the EveryLife Foundation report said. “Additionally, many participants wanted information about the vaccine’s safety for their specific rare disease or age group.”

Among the conclusions the EveryLife Foundation drew from survey results is that further education about how the EUA process works might be helpful to people with rare diseases and their families.

“Participants who felt that safety and efficacy were very important to them reported they were less likely to get vaccinated under an EUA, which is how the current vaccines were authorized,” EveryLife Foundation said. “This may point to a mistrust of the EUA process that could be rooted in a lack of understanding about the level of evidence required for obtaining an EUA, thus further education about the rigor of this authorization process is needed.

“As additional real-world data (data collected from people being vaccinated in the public after authorization) becomes available, it will be important to communicate it with the rare disease community, especially when it speaks to the safety and efficacy of the vaccines in subpopulations like those with immune-compromising diseases, for example.”

About the Author

Laurie Watanabe is the editor of Mobility Management. She can be reached at

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