Over the nine months we have been collecting COVID-19 race and ethnicity data, more states are reporting more metrics, in more accessible ways. However, the continued lack of either complete federal demographic data or federal guidelines for what states should publish make it impossible to fully understand who is being infected with and dying of COVID-19. This lack of comprehensive data hampers efforts to create policy that could mitigate the disparities we have seen throughout the pandemic.
The missing data means that we do not know the extent of what is going on in communities across the country, and even the data we do have is often overlooked in the cacophony of the pandemic. More Black Americans have died of COVID-19 since the pandemic began than there are names on the Vietnam Memorial. More Black or Latinx people have died than the number of people commemorated on the AIDS Memorial Quilt. The loss to the country, and to particular communities, is on a catastrophic scale. Complete data from the federal government would allow policy makers to understand what has happened and allocate the appropriate resources necessary to support targeted public health mitigation efforts for these communities.
What data we have shows declining—but persistent—inequities
In most states, the population groups at the highest risk of having or dying of COVID-19 have remained the same throughout the pandemic, though their relative risk has decreased over time. In June, for example, Black people were nearly 18 times more likely to have tested positive for COVID-19 than their white neighbors in Maine. Now, Black people are slightly less than four times as likely to have tested positive for COVID-19 as white people in Maine—still a terrible figure, but a smaller disparity. And although these disparities have decreased since earlier in the pandemic, they persist for many communities throughout the country.
The largest disparities between white people and Latinx people are in Washington and Oregon, where Latinx people are 3.7 times more likely to have tested positive than their white neighbors. Massachusetts fares little better, with Latinx people 3.6 times more likely to have tested positive for COVID-19 since the pandemic began.
South Dakota, Utah, Wyoming, and New Mexico are reporting the highest COVID-19 rates for people classified as American Indians or Alaska Natives. In all four states, more than one in six of these Indigenous people have tested positive for COVID-19 since the pandemic began.
In New Mexico, one in seven Indigenous people have tested positive, and they are 4.5 times more likely to have COVID-19 than their white neighbors.
In Washington, DC, Black people are nearly six times as likely to have died of COVID-19 as white people.
Too much data is still missing
States are not reporting any data about the race of a third of COVID-19 cases. Race and ethnicity data is not publicly available for more than eight million people who have received a positive COVID-19 test result. This makes it very difficult to craft policies that are more responsive to the impacts of structural racism on the pandemic. For example, Colorado’s restriction levels are based on the number of new cases per 100,000 people. Currently, the number of new cases per 100,000 over the past two weeks is more than twice as high for Native Hawaiians or Pacific Islanders, compared to the state overall. American Indians or Alaska Natives are 1.4 times as likely to have tested positive than the total population. If policy choices are made using the state average, it will erase and ignore the unequal harm being done to different communities.
The state and federal vaccination data we’ve seen to date suggests that lessons from the first year of the pandemic have not been learned. The federal government is not reporting race or ethnicity data about who has been vaccinated, nor is it providing guidance about how states and territories should report their data to the public. This once again leaves the sharing of data up to states to figure out—even though that data is crucial to understanding the country’s COVID-19 response. Fewer than half the states are reporting the race or ethnicity of the people vaccinated. Some states that do report use different demographic categories than they do for other COVID-19 data, making it impossible to see the impact of vaccine distribution on future cases or deaths. States are not reporting about the same vaccine metrics (people vaccinated or doses administered, for example) as each other, nor using standard demographic categories.
Only seven states report race or ethnicity data about who has been tested, and fewer than half the states report race or ethnicity data for people hospitalized with COVID-19. This is along with other missing data: for example, we have no data about race for 100% of cases in New York and 97% of cases in Texas; and we have no information about Asian or Indigenous people in West Virginia. Some of this data likely exists, but is not being made public by the states. Some of this data was probably never collected, or was not transmitted from the clinic to the county, or from the county to the state. During a White House COVID-19 Response Team briefing on January 27th, Dr. Nunez-Smith said that as part of “mitigating the health inequities caused or exacerbated by the COVID-19 pandemic,” it is “going to be essential that we collect data for the hardest hit communities and identify data sources that would enable development of short term targets for pandemic related actions.” While this is heartening, we must also ensure that new datasets don’t replicate the same problems found in the deeply flawed ones we’ve been working with throughout the course of the pandemic. We need to have comprehensive, consistent data, reported by the federal government, to properly understand the contours of this pandemic.
Charlotte Minsky contributed additional research for this article.
Only a third of states and territories with public vaccine data share information on the race and ethnicity of vaccine recipients, and those that do share it do so in highly unstandardized ways. But data from the federal government could answer the question of who’s getting vaccinated.