Researchers stress need to prioritize people with intellectual, developmental disabilities when distributing COVID-19 vaccines

The topic hits close to home for Dr. Emily Hotez, an assistant professor at the David Geffen School of Medicine at UCLA.

Emphasizing the role of “social justice” in medicine, three UCLA Health researchers and a top virologist at Baylor College of Medicine are urging that Americans with intellectual and developmental disabilities be given greater priority for receiving COVID-19 vaccinations.

In a paper published in The Lancet’s EClinicalMedicine, the researchers say people suffering from a variety of disabilities — among them autism spectrum disorder, blindness, cerebral palsy and attention-deficit/hyperactivity disorder — should have been included in phase one of the Centers for Disease Control and Prevention’s tiered guidelines for vaccine distribution.

Photos by Ann Johansson

The paper’s authors include: Emily Hotez, PhD, an assistant professor in General Internal Medicine/Health Services Research at the David Geffen School of Medicine at UCLA; her father, Peter J. Hotez, MD, PhD, a professor in the departments of pediatrics and molecular virology and microbiology at Baylor College of Medicine; Alice Kuo, MD, PhD, professor and chief of medicine-pediatrics at UCLA Health; and Kashia A. Rosenau, a project scientist at UCLA’s Autism Intervention Research Network on Physical Health.

For the Hotez family, in particular, the matter is deeply personal.

“I’m a sibling of an autistic young adult, and it’s been clear through my experiences, as well as through my research, that there is stigma throughout the health care system,” Dr. Emily Hotez said. “A lot of policies simply don’t include or equally consider people with intellectual or developmental disabilities just because they’re thought of as different or separate from the rest of the population.”

This group comprises between 1% and 2% of the U.S. population.

For the authors of the EClinicalMedicine piece, this disparity has been especially pronounced during the pandemic. “There is a growing consensus that individuals with I/DDs are particularly susceptible to COVID-19, demonstrating more severe illness, greater risk of hospitalization, and almost twice the case fatality rates for individuals aged 18-74,” they wrote.

While the CDC has offered tiered guidelines for vaccine distribution, states have been allowed to implement their own plans for deciding who would be vaccinated first. In December, the federal government clarified the guidelines to include those with Down syndrome in early vaccinations but did not specify people with other disorders.

“I respect the CDC tremendously, so I don’t think that this was at all intentional. However, it sort of speaks to the possibility of structural discrimination and bias to leave an important group out,” Dr. Kuo said. “When people think about at-risk medical groups, certainly cancer and organ transplants spring to mind, but they don’t necessarily think about the challenges that come with having an intellectual/developmental disability.”

Kuo said the “data are pretty clear that these populations are at higher risk for morbidity and mortality from COVID, so disabled populations should be prioritized for the COVID-19 vaccine.”

Working together on the leadership team of the Autism Intervention Research Network on Physical Health, Drs. Emily Hotez and Kuo, along with Rosenau, expanded their efforts to enhance the physical health and well-being of people with autism and others with developmental disabilities.

“It’s an initiative that’s been going on for about 15 years, but, recently, UCLA assumed leadership of the network,” Dr. Emily Hotez said. “Including an Autistic Researcher Review Board, as we have done in the AIR-P, is an innovative model for ensuring that research not only includes people with IDDs but really speaks to their needs.”

Through this relationship, Dr. Kuo raised the possibility of teaming up with Dr. Hotez’s virologist father, who has become a regular on the TV news circuit during the pandemic, to raise awareness about the country’s vaccine rollout plan.

“The light bulbs went off and everyone said, ‘Yeah.  Absolutely,’” Dr. Peter Hotez said. “So that’s how it all came together.”

Dr. Peter Hotez said that prior to the pandemic, his family was weighing living options for their youngest daughter, who has autism. They were considering group homes, which are high-risk during the pandemic due to the close quarters.

“We’ve been looking at various group homes for Rachel,” Dr. Hotez said. “Where’s the protection? There’s nothing. And oftentimes, those with I/DD have co-occurring physical conditions that make them susceptible to COVID. And they’re just left out of discussion about COVID-19 vaccinations. I’m quite worried about it. There are always groups that are left out, and this tends to be the usual one.”

Dr. Peter Hotez is a vocal proponent of equity and inclusiveness being an integral part of medical ethics, and his daughter has taken up that passionate commitment.

“You know, a lot of people in the ID/DD community are under-represented in research and in policy-decisions,” he said. “When I started having conversations with Alice and Emily, it was just a logical thing to do. If we can make a difference in that way, at least get it on the radar, I think that would be very helpful.”

If they can get the government’s attention, the team is hopeful they can raise the status of disabled individuals in other areas. “This exclusion is just one example of many barriers to health and well-being for this population,” Dr. Emily Hotez said.

Learn more about COVID-19 and vaccines.

Tina Daunt is the author of this article.

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