Coronavirus pandemic, discrimination, and cold reality

What can be expected as the coronavirus pandemic expands, with more and more positive cases being reported? For those with Down syndrome, they should expect discrimination and, therefore, should plan to deal with this cold reality.

Pandemic & Down syndrome

The novel coronavirus COVID-19 deserves its adjective “novel” in that it is so new there is very little known about it or what will happen. But one thing that has been shown in every country where a patient has tested positive for it is that there are assuredly many more patients to test positive.

There is even less literature out there on what impact coronavirus will have on those with Down syndrome. But, this study from Mexico from 2010 contains chilling statistics of what impact a previous respiratory influenza pandemic had on patients with Down syndrome.

The study covers the impact of the H1N1 pandemic in Mexico. Here’s what it found:

• The median time from onset of symptoms to hospitalization was similar between those with Down syndrome and without. But,
• Hospitalization was reported for 61.7% of patients with Down syndrome compared to just 9.2% of patients without Down syndrome.
• Endotracheal intubation of patients occurred with 18.2% of reported cases of patients with Down syndrome, but just 2.6% for those without Down syndrome.
• Ultimately, 23.3% of those with Down syndrome died vs. 0.1% of those without Down syndrome.

Individuals with Down syndrome are already more susceptible to respiratory diseases due to smaller air passages and being more immuno-compromised. Add to that the higher rate of cardiovascular pre-existing conditions, poorer access to healthcare, and, in the cited study, lower levels of vaccinations for flu and all of those factors inform the grim outcome patients with Down syndrome face if infected with a flu pandemic.

Authorized discrimination

A New York Times article from the week when everything started being cancelled shed light on the scarcity the United States faces if the pandemic hits Wuhan or Italy levels of infections.

The United States has an estimated 45,000 ICU beds. That number is lower per capita than Italy, China, and South Korea. There are estimated to be about 160,000 ventilators in the United States, but most of these are not lying dormant waiting to be used; rather most are being used already. The article reports that in a “moderate outbreak” we should expect 200,000 Americans will need an ICU bed and many of those will need ventilators.

If these numbers pan out, even I can do the math that this will result in massive scarcity of needed resources for the infected.

And, that math works out very badly for those patients who also happen to have Down syndrome.

This is because they will be discriminated against, legally.

A 2008 Congressional Research Service report addresses “The Americans with Disabilities Act (ADA): Allocation of Scarce Medical Resources During a Pandemic”. It covers the anti-discrimination measures of not only the ADA but Section 504 of the Rehabilitation Act that are supposed to protect those with disabilities from being discriminated against by private providers and entities that accept federal funds. But, in the case of medical scarcity, discrimination can be justified based on medical judgment of viability.

Key quotes from the concluding section of the report:

• [A] determination that an individual not receive a vaccine because the vaccine would not be effective given his or her health situation would be unlikely to raise ADA concerns, because it would be based on a medical determination of treatment. The mere fact that a decision would have a disparate impact on individuals with disabilities would not necessarily be sufficient to violate the nondiscrimination mandates.
• For example, decisions regarding who should be admitted to a hospital when there is a shortage of beds, as well as who should receive scarce medications, could be difficult to make. To the extent that these decisions are based on an individual medical treatment decision (e.g., where the individual is allergic to the scarce medication or would not mount an immune response to the vaccine), case law under the ADA and Section 504 would indicate that a violation of these statutes would be unlikely.

If the New York Times article’s math is right and there comes a time when there are not enough ICU beds for all the patients that need them, and given the significantly higher mortality rate of individuals with Down syndrome with flu respiratory infections, it is unlikely a hospital will be convinced an ADA complaint would override a doctor’s determination that a middle-aged patient without any other co-morbidities takes precedence over a patient with Down syndrome based on estimated survivability.

Cold reality

And, so, as a parent with a daughter with Down syndrome, how am I and the thousands of other parents and those with loved ones with Down syndrome supposed to react to this Coronavirus pandemic in light of the worst possibility that can happen. Should our loved ones become infected, and should they need hospitalization, and should the pandemic have progressed to make beds scarce, well, the contingencies don’t look good.

So, in light of that cold reality, then what is left to do is maximize efforts to minimize infection. In my own case, we’re lucky in that Kentucky has been early in shutting things down, including our local schools. Plus, Juliet does not have any other conditions commonly associated with Down syndrome and she’s a teenager, an age group that seems less vulnerable to being infected.

But, for my friends of children who are immuno-compromised or of older age, I hope they are not in denial of the cold reality their loved one may face. And “older age” for individuals with Down syndrome is relatively younger than for the rest of us. With a life expectancy that is roughly 3/4 of what the rest of us can expect, then relatively speaking, “older age” would apply to any individual with Down syndrome aged 45 years or older (and I would still err on the side of caution and consider anyone over 35 to be in a corresponding “older age” cohort for considering the CDC and WHO recommendations).

In many other posts on this blog, I’ve raged at the systematic discrimination our loved ones with Down syndrome face with the administration of prenatal genetic testing, Medicaid, and education systems. I have that same amount of rage towards this systematic discrimination in a health crisis situation, but anger isn’t going to change the situation.

At the Hubert Humphrey Building in Washington D.C., which houses the Department of Health and Human Services, a quote of his is inscribed:

“The moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life, the sick, the needy and the handicapped.”

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.

And, that’s just the cold reality that us parents and those with loved ones with Down syndrome need to acknowledge and be prepared for.