COVID-19 data tells us a lot about the disease’s effects. In the U.S., there have been over 100 million COVID-19 cases and 1.1 million deaths total and tens of thousands of hospitalizations each week. Those numbers are enormous—and they still hide the true impact of COVID-19 on individuals and communities. Every person in America has had their own pandemic experience shaped by their race, where they lived, their job, access to health care, and pre-existing health concerns. Yet a closer look at the data shows us that, at every point in the pandemic, COVID-19 has had a disproportionate toll on people of color.
Data gaps underestimate COVID-19’s toll on communities of color
A recent USA Today article investigated how inconsistent death certificate reporting during the pandemic has resulted in undercounting of COVID-19 deaths in Black, non-white Hispanic, Asian, and American Indian or Alaska Native populations. Death certificates—official documents similar to birth certificates that are issued at death—in these populations were much more likely to have so-called “garbage codes,” meaning they were assigned an incorrect cause of death. Garbage codes have historically been used more for people of color and are most common when people die outside of a medical setting. We can’t know if these deaths were related to COVID-19, but the fact that the use of garbage codes increased 20 percent during the pandemic—and only among people of color—suggests that the available COVID-19 death data isn’t telling the full story.
There have been massive gaps in COVID-19 data throughout the pandemic, and this has not improved much with time or reporting on missing data. In July 2020, news broke that more than half of COVID-19 infection data did not include race or ethnicity information. Earlier this year, Stat News reported that one-third of infections were still missing this data over two years later. In fact, three states do not report any race or ethnicity data in COVID-19 reporting.
Breaking the missing data down reveals disparities across non-white populations. One study found that nearly two-thirds of states failed to report data for American Indian and Alaska Native, the groups at highest risk of COVID-19 infection, hospitalization, and death. Even before the pandemic, data on Native populations was underreported and misclassified. Other studies have found gaps in testing data, with Hispanic people having lower testing rates than non-Hispanic people, and Black, Hispanic, and Asian children having lower testing rates than white children. These findings don’t just reflect unequal access to COVID-19 resources. They represent missing data that could tell us how COVID-19 has affected communities of color.
The disparities in COVID-19 data are not limited to state and federal reporting. A study found that Black, Asian, and female participants were underrepresented in over 100 clinical trials for COVID-19 vaccines and treatments. And that was only looking at trials that actually reported demographic data. More than one in five trials in the study didn’t report race, and nearly 30 percent didn’t report ethnicity.
COVID-19 has not impacted all communities equally
A few months into the pandemic, it became clear that COVID-19 was affecting some communities more than others. Black and Native populations were getting sick and dying at higher rates than other populations. Service workers and other blue-collar workers, who are disproportionately people of color, were at increased risk of COVID-19 exposure. One study found that working-age Black and Hispanic Californians had the highest excess mortality in the state. Another study highlighted the higher death rate among workers whose jobs never went remote, who again were disproportionately Hispanic, Black, and Native. As recently as last fall, Black, Hispanic, and Native people were still getting COVID-19 at significantly higher rates than white or Asian people and remained at higher risk of hospitalization and death from COVID-19.
Several studies found that the tools used to perform routine screening for fevers and oxygen levels don’t work as well on people with dark skin, resulting in missed diagnoses and delayed treatments. Even after diagnosis, people of color received poorer treatment and had worse health outcomes. CDC reports found that people of color did not receive antiviral Paxlovid or monoclonal antibody treatments at the same rates as white patients, even when they were at higher risk. These are treatments designed to prevent COVID-19 infection from progressing from mild to severe, and they have been disproportionately denied to patients with the worst COVID-19 outcomes.
When adjusted for age, the highest death rates have been among American Indian or Alaska Native, Hispanic, Native Hawaiian or other Pacific Islander, and Black populations. In three years, COVID-19 has decreased life expectancy across all populations, but none have been hit as hard as Hispanic and Black men. In the case of Black communities, these deaths weren’t limited to COVID-19 but were ripple effects of the pandemic. Non-COVID-19 deaths related to increased stress, despair, and economic distress increased dramatically among Black people during the first year of the pandemic. Cardiovascular disease, substance use, and suicide deaths shaved nearly four years off the life expectancy of Black men.
The pandemic impacted long-term health in communities of color
An NIH study of COVID-19 severity and long COVID in New York City found that Black and Hispanic adults were nearly twice as likely as white patients to have severe symptoms. In the months after a COVID-19 infection, Black and Hispanic patients were also more likely to have long-term health complications, such as chest pain, persistent headaches, shortness of breath, and diabetes. Most strikingly, a higher rate of complications, including severe blood clots, was seen even in Black and Hispanic patients with a mild or moderate COVID-19 infection. In surveys, Hispanic people have consistently reported the highest rates of long COVID, followed by Black people. In the most recent U.S. Census Bureau survey, 30 percent of Hispanic people and a quarter of Black people with long COVID report experiencing severe limitations in their daily lives.
The pandemic has not only impacted the physical health of communities of color. Mental health has suffered as well. An analysis of the mental health effects of COVID-19 in the U.S. and the U.K. found that racial and ethnic minorities were more likely to show signs of depression and anxiety during the pandemic, even after adjusting for prior mental health status and the restrictiveness of COVID-19 lockdowns. In a Kaiser Family Foundation survey, over 60 percent of Black and Hispanic parents reported that the pandemic had negatively impacted their mental health, compared to 49 percent of white parents. Even as they were experiencing worse mental health impacts during the pandemic, Black, Hispanic, and Asian people were less likely than white people to receive mental health care. And these numbers are only the beginning. It will likely be years before we fully understand how much COVID-19 has affected people of color in the U.S.
What’s next for communities of color?
Like other COVID-19 data, most long COVID research fails to include race and ethnicity data. One study found that this data was included in only 15 percent of long COVID studies published through March 2021. But there are efforts to reverse the trend. In 2021, the NIH launched the four-year RECOVER Initiative to understand the long-term effects of COVID-19 in different populations. The study is recruiting 40,000 participants who are representative of the U.S. population, including half female participants and 47 percent people of color. Anyone can volunteer to join the studies and help improve our understanding of COVID-19 in people of all races. Additionally, the Patient-Led Research Collaborative is a group of researchers with long COVID who are leading studies to understand better what causes long COVID, improve tools to diagnose long COVID, and investigate long COVID’s mental health toll. Long COVID patients and advocacy groups have also compiled resources and launched support groups for individuals and communities still living with the impacts of COVID-19.