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Excerpted From: Mary Crossley, Prisons, Nursing Homes, and Medicaid: A Covid-19 Case Study in Health Injustice, 30 Annals of Health Law and Life Sciences 101 (Summer, 2021) (218 Footnotes) (Full Document)
Racial disparities in the COVID-19 pandemic
As the coronavirus closed down the United States economy in March 2020, it did not take long for predictions to emerge claiming that COVID-19 would disproportionately affect Black communities. Only weeks into the shutdown, Dr. UchΘ Blackstock, a health equity expert, began sounding the alarm, stating in an interview “[w]hen it hits the fan, we're the ones that are going to suffer the most.” Soon after that warning, reports of excess morbidity in Black communities--to use the sterile language of epidemiology--were followed by reports of excess mortality. Put plainly, more Black people than White people were getting sick and dying of COVID-19.
As the virus spread, reports from points far and wide confirmed Dr. Blackstock's prediction. Reports came first from big cities. In Milwaukee, where Black people make up only twenty-six percent of the population, data reported in early April 2020 showed them representing nearly half of the coronavirus infections and eighty-one percent of deaths. Just two days later, a report shared that seventy percent of Chicago's deaths were of Black residents, despite only twenty-nine percent of its residents being Black. Nor were Southern cities immune. In New Orleans, which celebrated Mardi Gras just as the virus was gaining a foothold, deaths in the predominantly Black Orleans Parish accounted for forty percent of the deaths in the entire state of Louisiana. Reports of “super spreader” events in Black communities in smaller locales also began to emerge. A funeral in Albany, Georgia left the midsize city's sole hospital overwhelmed by patients suffering from COVID-19, an illness that its doctors had never seen before.
Beyond city-level reports of racial disparities, reports from groups defined along more specific axes told similar stories of disparities. Black Medicare beneficiaries were hospitalized with COVID-19 at rates nearly quadruple those of their White counterparts. At the opposite end of the age spectrum, Black children infected with the virus were five times more likely to need hospitalization than White children. Predominantly Black and Latino neighborhoods in New York City suffered death rates as much as fifteen times higher than those experienced in predominantly White neighborhoods a subway ride away. Meanwhile, the racial disparities in patient experiences and outcomes translated into disproportionately severe physical and mental health risks for Black health care workers. The virus's disproportionate impact on Black Americans seemed pervasive.
The narrative that emerged early on has persisted: Black and Brown Americans are bearing the brunt of the COVID-19 pandemic. The steady drumbeat of reporting about the racial disparities grew numbing. But for folks familiar with the pervasiveness and persistence of racial health disparities prior to the pandemic, these reports were unsurprising. Dr. Camara Jones, a family physician and former president of the American Public Health Association, reflected that “COVID is just unmasking the deep disinvestment in our communities, the historical injustices and the impact of residential segregation.” That said, the predictability of the disparities did not detract from their devastating impact. More critically, some have pointed out that this disparate doling out of disease and death flows from choices our society has made. Legal scholar KimberlΘ Williams Crenshaw wrote of “people of color whose chances of survival [from COVID-19] were handicapped by generations of human-engineered disasters before they found themselves in the path of a natural one.”
A crucial point bears emphasizing: Biology does not explain these disparities. Or, as Patricia Williams unequivocally stated, race is not “a signifier of innate disease propensity.” Racial disparities in the pandemic's impact are not the product of genetic variants. Instead, social, economic, and environmental pathologies explain them. For example, a history of overt discrimination and continuing structural racism has left Black people with fewer economic resources than White people, forcing many to live in crowded housing and use public transportation, where social distancing is difficult. Long-standing educational inequities help explain why Black people are disproportionately represented among low-wage essential workers, whose work requires contact with the public. Reflecting health disparities that pre-dated the pandemic, Black people suffer from higher rates of chronic health conditions like hypertension, chronic lung diseases, obesity, and diabetes, all of which increase the risk that a COVID-19 infection will be severe or deadly. The disproportionate prevalence of such chronic conditions is traceable to social determinants of health like poverty, food insecurity, environmental toxins, and stress. Additionally, Black people are less likely to have private health insurance, in part because they are overrepresented in low-wage jobs that do not offer coverage. As a result, they face more barriers to accessing high quality medical care and may have to pay out of pocket if they seek care. Moreover, a long history of racism within medicine and public health has fed a reservoir of mistrust in Black communities, especially when it comes to new and deadly diseases, and that mistrust creates another barrier to care. These pathologies existed before the pandemic; during the pandemic they have combined to a particularly devastating effect.
All of these explanations for COVID-19's disproportionate impact on Black people reflect social or political choices. Sociologist Courtney Boen, whose work focuses on health inequality, made the point succinctly: “[t]hese are not natural or inevitable biological consequences .... Any disparity that we're seeing in terms of race in the pandemic is socially and politically constructed. These disparities are due to racism.”
Disability disparities in the pandemic
People with disabilities also have faced heightened peril and suffered a disproportionate toll during the pandemic. We know less about COVID-19 infection rates and deaths of people with disabilities because that data has not been systematically collected or reported in the United States. The tally of deaths in nursing homes, however, provides some evidence. As of February 14, 2021, more than 128,000 nursing home residents--most of whom we can presume were disabled--had died from COVID-19. The virus has also disproportionately infected people with disabilities who live in group homes. Early research indicates that people with developmental disabilities who live in group homes are four times more likely than the general population to contract COVID-19 and about twice as likely to die from it.
COVID-19's disparate impact on disabled people is not limited to congregate living settings. According to the Centers for Disease Control and Prevention (CDC), more than nine in ten people who died from COVID-19 also had some other health condition that contributed to their death. Although definitions of disability vary (in both legal and nonlegal contexts), conditions like diabetes, heart disease, and asthma can all constitute disabilities. In December 2020, the CDC added Down syndrome to its list of conditions that place patients at risk for severe COVID-19 symptoms. And, in the absence of a comprehensive count of infections and deaths in the United States, data from other countries shed some light on the pandemic's disproportionate impact on disabled people. From March to mid-July 2020, the British Office of National Statistics reported that fifty-nine percent of all COVID-19 deaths in England and Wales were deaths of disabled people.
From early on in the pandemic, disabled people sounded the alarm about the existential threat that the virus posed to them. The fear is that discrimination--operating under the guise of triage policies implemented in the face of resource shortages--would result in people with disabilities finding themselves deprived of needed medical care and supports, with potentially deadly consequences. In early April 2020, Alice Wong, an activist, media maker, and consultant, who uses a power wheelchair and non-invasive ventilator, wrote:
Were I to contract coronavirus, I imagine a doctor might read my chart, look at me, and think I'm a waste of their efforts and precious resources .... He might even take my ventilator for other patients who have a better shot at survival than me. All of these hard choices doctors have to make primarily hurt those hit hardest, not the people who present as worthy investments of scarce resources. Who gets to make these hard choices and who bears the brunt of them is a matter of inequality and discrimination toward protected classes.
In addition, high rates of illness and death among people with disabilities and Black people are not unconnected. Although some variability exists by disability type, disabilities are generally more prevalent among Black Americans than among Whites, Latinos, and Asians. This intersection of race and disability is under-studied, but extant research does not point to innate biological differences as an explanation. Instead, the higher prevalence of disability among Black Americans reflects an increased likelihood of developing or acquiring disability through social and environmental causes. As a practical matter, the higher prevalence means that Black people are disproportionately represented among Americans with disabilities. Thus, intersectionality of Blackness and disability is normal, not exceptional.
The Scope of the Case Study
The uneven distribution of pain and suffering caused by the pandemic presents a remarkable case study. Considering why the coronavirus has devastated some groups more than others offers concrete examples of abstract concepts like structural discrimination and institutional racism, examples that play out in lives lost, families shattered, and unremitting anxiety. This essay focuses first on prisons and then on nursing homes--institutions that both emerged as COVID-19 hotspots--to examine how societal choices have caused Black people and disabled people to suffer disproportionately in the pandemic.
As the essay will describe, Black and disabled people are disproportionately represented in prisons and jails. And nursing homes, and other care facilities, are full of people who need care or assistance because of physical or mental disabilities. It is no accident that so many Black and disabled people are incarcerated and so many disabled people are in nursing homes or other institutions. These realities do not reflect some criminological or biological inevitability. Instead, just as high COVID-19 infection and mortality rates among Black people generally are the result of social and political choices rather than genetic predispositions, who ends up residing in these pandemic hotspots reflects choices our society has made and the value we have placed on human lives. The disparate effects are traceable to political and policy decisions--from racially tinged political decisions to pursue a “war on drugs” to states' halting progress in increasing the availability of home and community-based services (HCBS) for people with disabilities. Upon close examination, the coronavirus's rampage through institutions and communities reveals the truth that politics, not biology, determines who is especially vulnerable to poor health outcomes and premature death. In arguing for a “civil rights of health” initiative, Angela Harris and Aysha Pamukcu put it simply: “[V]ulnerability is made, not born.” Negative attitudes towards and devaluation of the lives of Black people and disabled people are connected as well. As an example of how ableism values some lives more than others, Harriet Williamson points to Health and Human Services Secretary Azar's asserting that the prevalence of underlying health conditions among the United States' “unfortunately” “very diverse” population was to blame for the country's high infection and death rates. In this way, “[a]bleism wraps into other prejudices.”
This essay explores how the pandemic illuminates structural discrimination against Black people and disabled people by considering how the creation of vulnerability among those groups. It presents an array of choices-- some stretching back decades and others more recent--that led to disproportionate representation of Black people and people with disabilities in both nursing homes (particularly those hardest hit by COVID-19) and in prisons and jails. In doing so, it will highlight the importance of intersectionality of race and disability in these COVID-19 hotspots.
Moving beyond its focus on pandemic hotspots, the essay will review how political decisions regarding the Medicaid program have contributed to disparities in the burden of COVID-19 illness and death. In particular, it will focus on how some states' choices to reject federal funding to expand their Medicaid programs to cover more low-income residents predictably contributed to a more grievous toll for Black Americans. Although this essay's primary emphasis is on these “rearview mirror” choices, it will conclude by briefly suggesting how “going-forward” choices made during the pandemic implicate health justice. Keeping equity issues centered will be critical to pursuing policies that mitigate, rather than further entrench, unjust health disparities.
[. . .]
Life is filled with choices; some are more consequential than others. An emergency presents choices that demand quick responses, and a public health emergency requires choices where lives hang in the balance. The COVID-19 pandemic is no exception. Issues of equity pervade these choices, whether or not policymakers and the public discern or care about equity. This essay has focused on how political and legal choices made prior to the pandemic contributed to the tragic and unjust burden of illness and death that Black and disabled Americans have borne during the pandemic. One of my purposes, however, is to use an increased visibility of the constructed nature of health vulnerability to urge greater attention to issues of equity going forward during the pandemic and after.
Choices already presented during the pandemic have risked imposing excessive burdens on disabled people and Black people in myriad ways. As coronavirus hospitalizations mounted in several locales early in the pandemic, the prospect that inadequate resources--and particularly an insufficient number of ventilators--might prompt triage decisions devaluing disabled lives loomed large. In another example, hospitals with the highest shares of revenues received twice as much of the early distribution of relief funding from the CARES Act, as compared to hospitals with the lowest share, namely hospitals that serve large numbers of patients who are uninsured or have Medicaid coverage. Disadvantaging safety net providers predictably disadvantages the patients who rely on them for care. Health law scholar Courtney Anderson observed that it was not until the pandemic caused housing instability for higher-income people that eviction-protection measures were enacted, and even that short-term fix failed to address many of the housing needs of low-income persons and people of color. Many more examples could be given.
Increasingly, advocates for health equity have demanded that equity explicitly be made central to policy decisions and implementation strategies during and following the pandemic. Naming the historical choices that predictably resulted in unjust disparities already suffered by Black people and people with disabilities in the pandemic should spur us to recognize how important it us for us, going forward, to make choices that will mitigate and repair those disparities.
John E. Murray Faculty Scholar and Professor of Law, University of Pittsburgh School of Law.
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