COVID-19, Data, and Health Justice
As COVID-19 rips through the United States and many other countries, it exposes the fault lines of social injustice and divisions that determine whether people have necessary resources. In the face of critical stay-at-home orders, who has a job with sick-leave benefits? Health insurance? A living wage? Or a home with Internet access?
Exposing these inequities requires people who can systematically collect, organize, and publicly report the evidence. But in the U.S., the available population health data are not up to the task. The COVID-19 data reported by the U.S. Centers for Disease Control and Prevention (CDC) are solely for the national and state level, and for total population only. The first data sets to document the count of confirmed cases and deaths by U.S. county, released on March 27, were produced not by a government agency, but by the New York Times and Washington Post. This is the second time in five years that independent journalists have filled glaring gaps in public health data. In 2015, The Guardian began publishing “The Counted” to compile systematic data on the number of people killed by the police in the U.S., which had been previously unavailable.
Notably, the CDC website provides no data on COVID-19 stratified by gender or race and ethnicity, and only recently began reporting data stratified by age. Yet it is now excluding “testing results for persons repatriated to the United States from Wuhan, China and Japan,” suggesting that the CDC does have access to detailed individual-level data. In addition, data on age, gender, race, ethnicity, and education are routinely included in death certificate data. Why are these data absent for COVID-19?
Since March 31, a growing number of health professionals, politicians, and advocates have begun to call for COVID-19 data to be reported in relation to race and ethnicity, as journalists have begun to reveal starkly higher burdens of COVID-19 mortality among African American, Latinx, and American Indian communities. Even state and local health departments that are attempting to release these data are finding, however, that racial and ethnic data are missing for well over half to two-thirds of the COVID-19 case reports. Systemic problems run deep.
Age is featuring prominently in national discussions about COVID-19, in terms of infection, severity of illness, and death. The initial supposition that only people 60 and older are at elevated risk is shifting with reporting of hospitalizations and deaths of people in their 20s through 50s.
However, age and its relation to risk of COVID-19 mortality is not the same across all social groups. In the U.S., risk of premature onset of and death because of chronic diseases, which may increase risk of mortality because of COVID-19, is greatest for African Americans, American Indians, Alaska Natives, and people with low incomes. Risk for people in their 50s in these groups may be more akin to that of people in their 70s in more privileged groups. The adverse health impacts of economic deprivation and discrimination built on a past of enslavement and colonization cannot be underestimated.
For accurate guidance on risk, testing and mortality data should be stratified by age, race, ethnicity, socioeconomic position, and gender. We also need data on type of work or unemployment, insurance status, sickness benefits, housing and homelessness, incarceration, nativity and citizenship status, sexual orientation, gender identity, and exposure to domestic violence. These all matter for risk, care, and prevention of COVID-19.
Data are also vital to capturing other effects of the pandemic. How is COVID-19 disrupting care of patients with chronic diseases? Consider lupus — a disease that disproportionately affects people subjected to economic deprivation and discrimination. They are routinely prescribed hydroxychloroquine, but access to this drug has been compromised since President Trump led the charge to tout it with scant evidence as a potential COVID-19 cure. Or, what about the immediate and enduring effects of stay-at-home mandates on physical and sexual abuse and violence within households; can these consequences be mitigated?
To ensure that COVID-19 work is grounded in health justice, we must generate and publicly report data on how it affects different populations and social groups and use a health equity lens to examine how the pandemic is exacerbating inequities.