Intellectual disability is the top unspoken risk factor for COVID-19. So why is it not prioritized for vaccine? | Opinion

Imagine: Your family is a happy one. Your adult child lives with you. She is content and industrious. She has therapy three days a week and has started a small business making and selling dog biscuits with some of her peers in one of her therapeutic groups. Like everyone else, you are concerned about COVID-19. You are older but not in the age where vaccination is currently eligible. Some of your daughter’s therapists still come to the house. They also go to the houses of other clients. Every day you worry what will happen if you get exposed and sick from COVID-19, not just for your own sake, but for hers. You also worry about her getting sick.

And you should. Your daughter has no comorbidities — no diabetes, obesity or heart disease — that make her eligible for a vaccine, but she has an intellectual disability. Based on research published this month, it turns out that is one of the highest unspoken risk factors for getting and dying from COVID-19.

There have been opinion pieces about vaccination of the population with intellectual disabilities (ID), but the most damning and definitive confirmation of fears came out in a national study led by Jonathan L. Gleason, the James D. and Mary Jo Danella Chief Quality Officer at Thomas Jefferson University. The largest study of its kind, tapping over 60 million people, shows that intellectual disability is the number one independent risk factor for getting COVID-19 in the U.S. Furthermore, it is second, below age, for dying from COVID-19. Perhaps most concerning, when hospitalized with COVID-19, the rates of death in this group are higher than others.

What increases their risk for COVID-19? Maybe it is exposure to therapists who go to multiple homes. Maybe it is the challenge of adhering to behavioral interventions like mask wearing. Perhaps, there is an underlying genetic reason, aside from Down syndrome, behind their ID, accounting for their increased risk. It does not matter, because no one seems to care.

What does this say about us as physicians and as a society?

When confronted with this sobering data, nothing has changed in the CDC recommendations for vaccination. This conscious and unconscious bias has long infiltrated medicine, making preventative health care less accessible to those with ID, and costing more government spending as emergency care becomes their first line of defense against sickness.

For the past 30 years, the Americans with Disabilities Act has protected those with physical disabilities by providing concrete guidelines. The ADA protects those with ID as well, but there are no specific guidelines provided. Guidelines cannot combat bias. COVID-19 has shed new light on many inequities in health care and this one is also deserving of attention. Both health care and society need to reframe perspectives on what makes a life worth living, and how we support each other to reach our potential. Helping those more vulnerable, ultimately helps us all.

Wendy Ross is the director of Jefferson’s Center for Autism and Neurodiversity.