In May, Emily Hotez, PhD, assistant professor in the Division of General Internal Medicine at UCLA, was one of 11 recipients of a grant from the Centers for Disease Control and Prevention (CDC) and the Association of University Centers on Disabilities (AUCD) to promote COVID-19 vaccine confidence among the disabilities community.
Though the grant, “Vaccine Confidence Dissemination Innovation,” was intended to only last three months, those involved have volunteered to continue promoting vaccine confidence on social media as long as necessary.
“There's a lot of things that need to be shared with the community that are naturally going to take longer than that initial [grant] period,” says Laila Khorasani, a recent UCLA graduate and volunteer with the project.
“Building trust with the community and spreading vaccine confidence takes time, and with the rise of the Delta variant it’s more important than ever to keep this project going.”
According to Dr. Hotez, a CDC survey from April estimated that among all Americans, COVID-19 vaccine hesitancy ranged from 3.8% to 25.6%.
During that same period, about 27% of those with disabilities said either they would not get vaccinated, or they were unsure, suggesting that vaccine hesitancy may be heightened in the disability community, she says.
Overall, “we know that vaccine hesitancy is an issue beyond the neurodivergent community,” says Dr. Hotez, “but there are particular barriers to vaccination for the neurodivergent community that are perhaps distinct.”
What make these findings even more concerning, according to Dr. Hotez, is when they are paired with COVID-19 infection and mortality rates. An article in The Lancet called COVID-19 “triple jeopardy” for people with disabilities, citing increased risk of poor outcomes from the disease itself, reduced access to routine health care and adverse social impacts of efforts to mitigate the pandemic.
“Staggering statistics have emerged during the pandemic that show individuals with Intellectual and Developmental Disabilities (IDD) were disproportionately affected by COVID-19,” Dr. Hotez says.
The Association of American Medical Colleges found that patients with IDD are six times more likely to die from COVID-19 than other people. Having IDD is the highest independent risk factor for contracting COVID-19, controlling for race, ethnicity and other variables.
Overcoming barriers
To better understand the barriers to vaccine uptake, access and confidence, students and trainees from two programs, UCLA Pathway for Students into Health Professions (PSHP) and the University of California Leadership Education in Neurodevelopmental Disabilities (UC-LEND), interviewed key stakeholders including individuals with disabilities, their families and medical professionals.
Barriers to vaccination acceptance come in the form of misinformation, mistrust of medical providers, sensory sensitivity and structural or systemic barriers: lack of transportation, lack of accessible vaccination sites, no personal time off, and a lack of Internet, Dr. Hotez says.
“We've started to synthesize some of these barriers and have tried to come up with some recommendations,” she says.
Those recommendations include increasing mobile clinics with vaccination capabilities, as well as resources like the UCLA Needle Anxiety Program, created by Drs. Alice Kuo and Eric Curcio. The program uses tools like numbing cream or a “buzzy bee” device which is kept in a freezer and vibrates, serving as a distraction from the injection process.
“Neurodivergent individuals may experience particularly heightened anxiety around needles, so it may be helpful for them – but this is a program that can reduce needle anxiety for everyone,” Dr. Hotez says. “Many accommodations that we need to offer people with disabilities are things that are important for everybody.”
Students and trainees have also gleaned strategies from their interviews with health experts and families on ways to effectively promote vaccine confidence.
“One thing I learned was that a lot of people actually don't really like the negative media focus on the pandemic,” Khorasani says. “People want to hear about the positives of getting the vaccines rather than hearing about the risks.”
Only talking about the risks makes it seem like “people can’t overcome it,” she adds.
One element of the project, Neurodiversity Health Chats, promotes vaccine confidence through a social media strategy learned from Hood Medicine, a non-profit public health collective of scientists, public health professionals and technologists sharing COVID-19 information.
That strategy includes parsing the information, sharing the positives and having all stakeholders emphasize the importance of COVID-19 vaccination on social media. Neurodiversity Health Chats has become the hub for all the data, content and social media created out of this grant, and will continue post-pandemic.
“We are aware of the health disparities that the neurodivergent community experiences more broadly,” Dr. Hotez says, “beyond the pandemic.”
The project will continue underneath the umbrella of the UC-LEND program, where Dr. Hotez says there are opportunities for the entire population to benefit. She says even if they improve vaccine confidence in one person, their efforts have been worthwhile.
“We're all invested in seeing this project continue, even if it's past the three months that it was originally supposed to be,” Khorasani says. “We really want to build this community of individuals who are interested in boosting vaccine confidence to hopefully end the pandemic.”
