Opinion | Prioritize People With Intellectual Disabilities for COVID Treatment

The FDA’s emergency use authorizations of monoclonal antibodies and more recently molnupiravir and nirmatrelvir/ritonavir (Paxlovid) for treating COVID-19 in people at high risk for severe disease brings great hope to the world and the global community of people impacted by intellectual disability. But access barriers pose a challenge. It is critically important that healthcare providers make these life-saving treatments available immediately to people with intellectual disabilities who test positive for COVID-19 — and advocate for those high-risk individuals.

We struggled to get this right during the initial rollout of COVID-19 vaccines. In March 2021, our research group released a study in the New England Journal of Medicine-Catalyst where we described the devastating impact of COVID-19 on individuals with intellectual disabilities. Indeed, our analysis of 64 million medical records across the U.S. demonstrated that having an intellectual disability is the highest risk factor for getting COVID-19 and, second only to age, for dying from it. Tragically, when admitted to the hospital with COVID-19, those with an intellectual disability were 32% more likely to die as inpatients. The CDC has now recognized the robust evidence that having an intellectual disability is a significant risk factor for death from COVID-19.

Our study, and others like it, led to the expansion of vaccine prioritization to people with intellectual disabilities in more than a dozen states as well as in Japan and other countries around the world. Civil rights lawsuits against Connecticut and Maryland allege they failed to prioritize intellectually disabled persons for vaccination. Ultimately, most states and countries failed to follow the clear evidence regarding this high-risk group with their early vaccine deployments.

We are at risk of repeating this mistake with these new life-saving treatments because few realize the risk of COVID-19 in individuals with intellectual disabilities. Tragically, information about the risk of COVID-19 in this population is more difficult to find than information about other risk factors such as age and pre-existing medical conditions. Therefore, providers may be less likely to provide these life-saving treatments to this vulnerable population. The CDC webpage that describes high risk categories merely references “disabilities” — much deeper research is required to understand the specific risk to the intellectually disabled population. This lack of clarity may have grievous consequences because the body of evidence for COVID-19 treatment is rapidly evolving, making it very difficult for providers to remain up to date.

Undoubtedly, healthcare providers would make this treatment available to patients with intellectual disabilities if they were aware of intellectual disabilities as a major risk factor for severe COVID-19 and mortality. It’s critical that healthcare providers understand this and discuss these treatment options with intellectually disabled patients.

With the rapid spread of Omicron and future COVID-19 variants, the CDC and leading medical organizations should clearly communicate the risk of severe COVID-19 for people with intellectual disabilities, and advocate for access to these newer oral antivirals and monoclonal antibodies that remain active against Omicron for these populations.

These medications offer the opportunity for us to save countless vulnerable lives — or to risk perpetrating a health disparity. We must get this right.

Wendy Ross, MD, is director of the Jefferson Center for Neurodiversity and Autism. Jonathan Gleason, MD, is chief clinical officer of Prisma Health.