Better collection, reporting of race and ethnicity data are essential for fighting Covid-19

This year has challenged Americans to confront their understanding of society and to start rewriting the future of equity in many national institutions, including our health care system.

As health care executives, we represent public health and medical experts fighting to eliminate health disparities. We are also members of one of the most vulnerable populations — Black Americans — who find themselves at a devastating confluence of risk for Covid-19 and for kidney disease, one of the chronic conditions that portends the worst Covid-19 outcomes.

Anyone can contract Covid-19. Yet it has become abundantly clear that vulnerable populations, especially Black communities — who are already disproportionately affected by diabetes, kidney disease, and other chronic illnesses — are especially susceptible to poorer outcomes if infected by the coronavirus.

The limited data we have, which pertains only to older Americans covered by Medicare, show that Black Americans are nearly four times more likely than white Americans to be hospitalized with Covid-19. These data paint a devastating portrait showing that health disparities, both during and before Covid-19, are heavily tied to social determinants of health — the conditions in which people are born, grow, live, work, and age.

In July, the New York Times wrote about federal data showing that Black and Latino people have been disproportionately affected by the coronavirus in a widespread manner. The newspaper was able to report on this only because the data were made available after the Times filed a Freedom of Information Act lawsuit to force the Centers for Disease Control and Prevention to release the information.

Enough is enough.

As Covid-19 continues to overwhelm our nation, it is imperative that we openly and honestly report, collect, and share comprehensive data from sources other than Medicare so we can understand and effectively address the pandemic, especially among the most threatened communities.

This starts with changing how the health care system collects and reports race and ethnicity data.

All states vary in how they report Covid-19 cases. Some large states, including Texas and New York, collect little to no race and ethnicity data for their cases. Only seven states track testingby race and ethnicity. These inconsistencies pose a threat to properly analyzing the pandemic’s impact on communities of color.

According to the CDC’s Covid data tracker, race and ethnicity data are available for only 53% of reported cases and 80% of reported deaths in the U.S., causing public health experts to rely on nongovernment organizations to fill this information gap, such as the COVID Tracking Project at The Atlantic and Johns Hopkins University of Medicine’s Coronavirus Resource Center.

The federal government needs to provide technical assistance and guidance to help state and local officials accurately report their race and ethnicity data, an essential step that can inform action to address health disparities as a national priority. Such data can also help develop strategies that target interventions for kidney disease and other chronic diseases that adversely and disproportionately affect people of color.

As the number of Covid-19 cases continue to rise, we urge Congress to prioritize passing legislation to build a comprehensive public health surveillance infrastructure to modernize reporting on Covid-19 and other diseases and conditions. This could be done through passing the Ending Health Disparities During Covid-19 Act of 2020 (H.R. 8200), which is intended to improve the health of all U.S. residents by strengthening the collection of racial and ethnicity data, creating equitable testing and tracing, expanding access to health insurance, and providing grants to local governments and community-based organizations to promote health and strengthen health outreach initiatives in underserved communities.

As leaders of patient-focused organizations, we have been working to bring awareness to and address health care disparities, but the problem is far beyond our collective ability. Only the federal government, mobilizing its resources and coordinating with state and territorial governments, has the capacity to address such ingrained, systemic challenges.

Our country needs to develop and implement a holistic plan at the federal, state, and local levels to improve the collection and timely reporting of race and ethnicity data now if we are to mitigate the effects of Covid-19 on Black and other vulnerable communities. At the same time, we need progress in addressing the social determinants of health that are deeply entwined with poor health outcomes for people of color.

We understand the difficulties of advancing health policy in today’s environment, but we are hopeful that the pandemic will bring a new urgency to this issue. Unless we make these demands today, we will never have the information necessary to inform a national conversation about what we must do to stop deadly diseases from ravaging Black Americans and other at-risk populations.

Oliver T. Brooks is a pediatric and adolescent medicine physician, chief medical officer for Watts Healthcare Corporation, and immediate past president of the National Medical Association. LaVarne A. Burton is president and CEO of the American Kidney Fund.

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