By SLN’s Co-Chair of Policy and Advocacy, Nina Bihani
In April of 2020, my brother grabbed an empty suitcase out of the basement and snuck into the garage and put it in the trunk of the car. Then, he corralled my parents and I into the car and insisted we go on a ride in the car. As I drove, he directed me to turn right, and then left, and so forth, until we were on the highway. Eventually, he admitted that we were going to the airport saying, “Michigan is broken.” Due to his developmental disability, my brother has struggled greatly to understand why the world turned upside down over the last year. He can no longer go to school, go to the pool, or for his daily walk at the mall. Amid quarantine and lockdown, he figured the best way to deal with the madness was to try to go somewhere else. When we drove up to the airport, which was completely abandoned at the time, my brother was immensely disappointed. From the car, it seemed to him that even the airport was closed. His hopes of getting out of dodge were dashed, and he knew he had no choice but to return home. Some ice cream helped cheer him up, but he was clearly despondent that his escape plan had failed.
Back then, we laughed at his ingenuity, feeling pride at his impeccable reasoning and planning skills. We were doing our best to social distance and keep my brother indoors because he wasn’t able to reliably and consistently keep a mask on his face. We did not want him to catch COVID-19, but we were also considered he might spread it to my parents. Arguably, my brother is the healthiest member of our family. Celery is one of his favorite foods. We didn’t consider him to be high risk.
Now, we know better. My brother’s intellectual/developmental disability, makes him part of the population that is at highest risk for mortality due to COVID-19–three times higher risk than those without I/DD. He’s also four times more likely to contract COVID-19 in the first place. Children with I/DD are at a shockingly high rate of risk, sixteen times more likely to die than their peers.
Similarly, new data is showing that people with schizophrenia and other thought disorders have an independent risk of COVID-19 mortality. This data is particularly concerning because it shows that after age, schizophrenia is the second highest risk factor for death from COVID-19. Although each disease and disorder have different pathology, the big picture outcome is the same: people with disabilities have a higher risk of death during this pandemic.
Although I/DD and schizophrenia are not part of the official CDC list of underlying conditions, they should be. Just like individuals with lung disease, high blood pressure, diabetes, and kidney disease, my brother is at greater risk of dying from COVID-19 than the average individual. On December 23, 2020, the CDC updated their list of underlying conditions to include Down Syndrome. On their website, they state this was done “to reflect recent data supporting increased risk of severe illness among persons with Down syndrome from the virus that causes COVID-19.”
And the CDC is right—Down syndrome is a risk factor that can contribute to morbidity and mortality from COVID-19. However, the larger underlying risk factor is I/DD, as medical bodies have stated. I/DD is an umbrella diagnosis that includes genetic conditions like Down syndrome, congenital conditions like cerebral palsy, and a myriad of other neurodevelopmental disorders. By choosing only one of these conditions, the CDC is ignoring so many others. I know the CDC states that the list on their website is incomplete, but by listing one, and not others, this only complicates the matter. It seems to imply that the CDC believes that Down syndrome is a greater risk factor than other forms of I/DD.
It’s true that people with Down syndrome have genes on their third copy of chromosome 21 that are overexpressed and can place these individuals at greater risk for cytokine storm. However, a large part of the risk that is conveyed from Down syndrome is common among all patients with disabilities, it is not inherent to Down syndrome. People with disabilities are more likely to have underlying conditions such as respiratory disease or epilepsy. They are also more likely to live in group settings, such as group homes. Even people who live at home with family, may have caretakers coming into their home on a regular basis, as my brother has. Further, due to their cognitive deficits, they may sometimes be unable to correctly and consistently social distance and/or wear masks. I don’t think the CDC intended to do this, but the choice to include Down Syndrome as opposed to neurodevelopmental disability fractures the power of advocacy in the disability community, and forces decisions about disabled patients to be made at the local level with varying results. For example, Tennessee, became the first state to prioritize developmentally disabled patients for the vaccine, but this is not the case everywhere else. We need guidance from the federal level, and it needs to be clear and complete. The current system is decentralized, with each state making its own plan, with mixed results.
Patients with developmental disabilities have had to fight desperately at every step of the way during the pandemic—for the right to be considered for ventilators, for the right to have an advocate present at the hospital, for the right to be safe in their homes, for the right to be safe at work, and so much more. These individuals, and their families, should not have to also fight for the right to be prioritized for a life-saving vaccine.
As a physician, I understand viscerally the desperation that we all feel to get vaccinated. I go to work every day wearing two masks and a face shield, with hand sanitizer in my pockets. I also understand that our resources are limited, and we must be careful with who we vaccinate, and when. But this does not mean we should forget about some of the most vulnerable in our society. We need to work together to make sure everyone has a seat at the table. We need clearer guidelines, and we need them to come from the top.
At this time, the CDC is requesting that individuals who want to share their experiences and concerns regarding the vaccination rollout and lack of prioritization in our community contact Lisa Wiggins at the CDC directly: firstname.lastname@example.org. Dr Wiggins has been tasked with collecting these experiences to further inform the CDC of our concerns. For tips about what to write, including a template, check out this guide from the Center for Dignity in Healthcare for People with Disabilities here.
Find this and more on our COVID-19 Resources page.