The COVID-19 vaccine will begin being administered in the third week of December in the United States. This presents the next phase of the coronavirus pandemic that risks discrimination against those with Down syndrome (and those who care for them).
The Great News
As reported in an earlier post, first, we should recognize the miracle that there is a COVID-19 vaccine within a year of the novel coronavirus’ known existence in nature. The typical vaccine can take a decade or more. Indeed, the fastest timeline for a vaccine to be developed previously was for the mumps … and, it took four years.
So, the development of not one, but multiple vaccines, for a virus unknown until December 2019 is simply amazing.
The (Still) Bad News
In previous posts, I have summarized the findings from the outset of the pandemic and continuing throughout that have reported how individuals with intellectual and developmental disabilities–Down syndrome in particular–are at a higher risk for contracting the virus and, once infected, dramatically more likely to die from it.
A sweeping new study only confirms the awful impact COVID-19 can have on our loved ones with Down syndrome.
Researchers analyzed the nation’s largest private healthcare claims database, identifying over 460,000 patients diagnosed with COVID-19 from April 1 – August 31, 2020. Here’s what they found:
From the summary:
- Developmental disorders. Across all age groups, COVID-19 patients with developmental disorders (e.g. developmental disorders of speech and language, developmental disorders of scholastic skills, central auditory processing disorders) had the highest odds of dying from COVID-19[.]
- Intellectual disabilities and related conditions. Across all age groups, COVID-19 patients with intellectual disabilities and related conditions (e.g. Down syndrome and other chromosomal anomalies; mild, moderate, severe and profound intellectual disabilities; congenital malformations, such as certain disorders that cause microcephaly) had the third highest risk of COVID-19 death… . Among COVID-19 patients under age 70, intellectual disabilities and related conditions still had the third highest risk[.]
(emphasis added).
The news only confirms all previous reports: COVID-19 disproportionately kills people with Down syndrome and other intellectual and developmental disabilities.
The potential very ugly, unjust, evil news
As I warned at the beginning of lockdown,
If things get to the point of scarcity with the coronavirus pandemic, our government will fail this moral test in its treatment of those with Down syndrome.
Fortunately, so far, we have by-in-large been spared medical rationing when it comes to assigning ICU beds, ventilators, and other scarce resources for treatment of those infected with the virus.
However, we begin at the point of scarcity with the vaccines.
While it was miraculous the speed with which the vaccine was developed, its development did not benefit from the loaves-and-fishes miracle of producing more than what is needed. Rather, even with a 100 million doses planned to roll out from Pfizer, that effectively is only enough to vaccinate at best 50 million as Pfizer’s is a two-shot vaccine.
As with any scarce resource, then, public health departments across the 50 states are developing policies for prioritizing who will get the vaccine first.
I will use my home state’s draft plan–which I believe has yet to be updated to address the coronavirus vaccine–as an example. Here is the table for who will be vaccinated in the first phase:
Your state is developing its own priority categories.
And, here’s where the risk of unjust discrimination comes in.
Just as in the scenario of who should get the sole remaining ventilator, a person with Down syndrome or a person without, deciding who is included in the priority categories runs up against the evolutionarily built-in bias against those considered disabled.
Between a healthy person who could go on to care for others versus a person with an intellectual disability who will still need to be cared for by others, well, this situation presents the risk that those historically discriminated against, warehoused, segregated, abused, targeted for euthanasia and sterilization, will be the victims of history happening again to them.
Even more sinister is the risk that some cold utilitarians will hold positions in public health and see this not as an opportunity to reverse history’s course of discrimination against the disabled, but an opportunity to fulfill those previous evil progroms.
Individuals with intellectual and developmental disabilities are to a significant extent reliant on public supports: public healthcare insurance through Medicaid; public housing through waiver services; public transportation; and publicly subsidized vocational training and placement services. Those with more significant health conditions or simply due to the challenges posed by being elderly are literally wards of the state if residing in a public intermediate care facility (ICF).
To an inhumane public health official seeking to maximize what he or she sees as the return on the investment of public health dollars and minimize the continued costs to the “system”, he or she can easily rationalize denying access to the vaccine to those who only present continued costs, i.e. those with Down syndrome and other intellectual and developmental disabilities.
State and private health insurers, and the developers of prenatal testing, already use this cruel cost-benefit analysis to justify the subsidization through public (Medicaid) and private health insurance of prenatal genetic testing. By identifying those potential lives that pose future healthcare costs prenatally, those costs can be “avoided” by those lives being “prevented.”
These are very real calculations that are made by public and private health policy makers. In the midst of a pandemic, under the cover of state of emergency orders, with only a limited number of vaccine doses to be given–which in every case could be justified to be given to someone without a disability over someone with a disability–these same policy makers could see this as an opportunity for reducing the burden on the health care system.
What can be done?
Similar to the advice given in addressing the risk that medical rationing would provide the same cover for discriminating against those with intellectual and developmental disabilities, there are numerous advocacy organizations seeking to ensure this vulnerable population is treated equitably and not ignored, forgotten or written off. (See, for example, this excellent letter drafted by the American Academy of Developmental Medicine & Dentistry, and signed onto by national disability organizations).
In every state, there is Protection & Advocacy (P&A). As I’ve written about before, these agencies grew out of the reports of abuse that was rampant in state-run institutions. They have the mission of ensuring those with ID/D are not the victims of illegal discrimination.
My home state’s P&A has been vigilant from the beginning of the pandemic to ensure policies for medical rationing are fairly developed and applied consistent with existing federal and state civil rights laws prohibiting discrimination against those with disabilities. Likewise, P&A is working to ensure the draft policy for vaccine priority categories includes those with ID/D and those who care for them–particularly those who live in congregate living as in the case of those in ICFs and community group homes–in the Phase 1A priority category of “medically vulnerable population.”
If, like me, you are terrified that, as awful as the virus is, the hell we’re living through can be made worse by the evil intentions of men, I encourage you to reach out and offer your assistance to your state’s P&A to ensure our most vulnerable to this virus are prioritized to receive the vaccine.
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