The largest study of patients with intellectual and developmental disabilities concludes that COVID-19 has had a “devastating impact” on these vulnerable patients. In response, at least one state has prioritized those with IDD for getting the vaccine.
The New England Journal of Medicine published a study at the beginning of March 2021 with a chilling title:
The Devastating Impact of Covid-19 on Individuals with Intellectual Disabilities in the United States
The study was the largest one yet, surveying over 64 million patients across 540+ healthcare systems. Within this population, 127,003 were identified as having an intellectual and/or developmental disability (IDD).
Of the population of patients with IDD, they had higher rates of COVID-19 incidence than the general population; they were more likely to be admitted to the hospital; and patients with IDD were more likely to die following a diagnosis of COVID-19. Having surveyed this large population, the researchers’ conclusion bears quoting in full:
Covid-19 has had a devastating impact on individuals with intellectual disabilities. In this study, having an intellectual disability was the strongest independent risk factor for presenting with a Covid-19 diagnosis and the strongest independent risk factor other than age for Covid-19 mortality. Patients with intellectual disabilities and their caregivers should be prioritized for vaccination and health care services.
While the needs of this population due to Covid-19 clearly require immediate attention, these results also reflect existing limitations of the health care system as they pertain to individuals with intellectual disabilities.
An overdue prioritization
Heeding the conclusion, Kentucky has added those with IDD to phase 1C, the third highest prioritized group.
Kentucky had been following the CDC prioritization guidance, which included Down syndrome, but not IDD generally. My daughter, who happens to have Down syndrome, received her second shot at the end of March. I am very grateful that the CDC and, in turn, Kentucky included “Down syndrome” in the list of factors that have an increased risk for the coronavirus pandemic.
But, as I’ve written about since the beginning, and particularly once studies began appearing soon after the beginning, and then after subsequent studies further corroborated the earlier studies, those with Down syndrome and other IDD should have been prioritized higher.
At the outset of the pandemic, I hypothesized that those with Down syndrome would be at a greater morbidity risk should they contract COVID-19 due to those with Down syndrome typically having smaller airways–not a physical condition desired for a respiratory inflammatory disease.
Then, studies were published finding that those with IDD were at a much higher risk for contracting COVID-19.
And, then, study after study finding that those with Down syndrome and those with IDD were at a drastically higher risk of dying from COVID-19.
Indeed, as the NEJM study concluded, IDD is the strongest indicator, other than age, for death from COVID-19.
Advocates here and in other states have been advocating for higher priority for those with IDD and their caregivers. For the most part, i.e. aside from Ohio and few other states, their efforts were either largely in vain, or, in the case of Kentucky almost too late to make much of a difference.
Reporter Corinne Boyer with the Ohio Valley ReSource published a profile of Nathan Young, a young man in Kentucky who has a developmental disability wondering if he would be eligible for the vaccine. Between interviewing Mr. Young and publishing the report, Kentucky had revised its phases to included not just those with Down syndrome but all IDD in 1C. Mr. Young has already had COVID-19 TWICE! Hopefully, he will soon get the vaccine.
But, it shouldn’t have taken this long. Mr. Young shouldn’t have had to wait until the end of March to be prioritized for the vaccine. The research had been consistent from the outset that those with IDD were not just at increased risk, but at the most increased risk aside from the very elderly.
For those who claim to be “following the science,” why weren’t our fellow citizens with IDD properly prioritized along with the 75+ age group? Ignorance can’t be claimed. So, what other innocent explanations can be provided besides a callous calculation that those with IDD would not make as loud of a fuss as unionized teachers or, in the worst case scenario, outright discrimination?
Justice delayed is justice denied. While better late than never is a cliche, ignorance, callousness, or bigotry should not be tolerated in public policy.
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