FDA emergency use clearances for monoclonal antibodies and more recently molnupiravir and nirmatrelvir / ritonavir (Paxlovid) for the treatment of COVID-19 in people at high risk of severe disease bring great hope to the world and the global community of people affected by intellectual disabilities. But access barriers pose a challenge. It is critically important that healthcare providers immediately make these life-saving treatments available to people with developmental disabilities who test positive for COVID-19 – and advocate for those at high risk.
We struggled to get it right during the initial rollout of COVID-19 vaccines. In March 2021, our research group published a study in the New England Journal of Medicine-Catalyst where we described the devastating impact of COVID-19 on people with developmental disabilities. In fact, our analysis of 64 million medical records in the United States has shown that having an intellectual disability is the highest risk factor for contracting COVID-19 and, after age, of having an intellectual disability. pass away. Tragically, when admitted to hospital with COVID-19, people with developmental disabilities were 32% more likely to die as inpatients. The CDC has now recognized strong evidence that having a developmental disability is a significant risk factor for death from COVID-19.
Our study, and others like it, has led to increased priority for 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 people with intellectual disabilities for immunization. Ultimately, most states and countries did not follow up on the clear evidence regarding this high-risk group with their first vaccine deployments.
We risk repeating that mistake with these new life-saving treatments because few people realize the risk of COVID-19 in people with developmental disabilities. Unfortunately, information on the risk of COVID-19 in this population is more difficult to find than information on 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’s web page that describes high-risk categories simply refers to “disabilities” – much more research is needed to understand the specific risk for the population with developmental disabilities. This lack of clarity can have serious consequences as the body of evidence for COVID-19 treatment evolves rapidly, making it very difficult for providers to stay up to date.
There is no doubt that healthcare providers would make this treatment accessible to patients with intellectual disabilities if they were aware that intellectual disability is a major risk factor for severe COVID-19 and mortality. It is essential that healthcare providers understand this and discuss these treatment options with patients with developmental disabilities.
With the rapid spread of Omicron and future variants of COVID-19, the CDC and leading medical organizations should clearly communicate the risk of severe COVID-19 for people with developmental disabilities, and advocate for access to these new ones. oral antivirals and monoclonal antibodies that remain active against Omicron for these populations.
These drugs offer us the opportunity to save countless vulnerable lives – or risk perpetuating a health disparity. We have to get it right.
Wendy Ross, MD, is director of the Jefferson Center for Neurodiversity and Autism. Jonathan Gleason, MD, is Clinical Director of Prisma Health.