Letter to Robert Redfield, Director of Centers for Disease Control and Prevention - Reps. Pressley, Kelly, Bass, Lee, Sen. Warren & Colleagues Call on Trump Administration to Fill Gaps in COVID-19 Demographic Data and Mobilize Resources to Affected Communities

Letter

Dear Director Redfield:

As the racial disparities in coronavirus disease 2019 (COVID-19) cases and fatalities have become undeniably apparent, Congress has recognized the importance of transparency by requiring the Centers for Disease Control and Prevention (CDC) to disclose race, ethnicity, and other demographic data related to COVID-19. In addition to releasing the information that is now required by law, we strongly urge the CDC to act to improve the accuracy and comprehensiveness of this data and to help identify communities with the highest need in order to inform the federal government's distribution of resources.

We have repeatedly called for greater transparency about the unequal impact of the COVID-19 pandemic on communities of color. As a result, the Paycheck Protection Program and Health Care Enhancement Act now requires the Department of Health and Human Services (HHS) to issue a report within 21 days, and every 30 days thereafter, disclosing demographic breakdowns by "race, ethnicity, age, sex, geographic region, and other relevant factors of individuals tested for or diagnosed with COVID-19," as well as COVID-19 hospitalizations and deaths. The CDC began disclosing some of this data, including race and ethnicity breakdowns for cases and hospitalizations, on April 17, 2020. The CDC's data show that Black patients are being disproportionately affected by the pandemic, making up 30% of cases, despite being only 13% of the population. This aligns with state and local data on the race and ethnicity of COVID-19 patients, which show that Black and Hispanic communities are bearing the brunt of cases and fatalities.

We are encouraged that HHS and CDC have heeded our calls to release information about these racial and ethnic disparities, and we look forward to their expanded reporting as required by the new legislation. However, we continue to have concerns about the comprehensiveness of this data. In the CDC's April 17 report, three-quarters of cases had no race or ethnicity data reported. The Patient Protection Program and Health Care Enhancement Act included $1 billion in funding to support CDC's data collection and surveillance systems. As the pandemic progresses, we urge you to work with state and local public health systems to modernize and improve surveillance and increase our nation's capacity to collect complete and timely data on each patient. At a time when the health care system is under unprecedented strain, it is essential that our data captures a complete picture of the disparate impact of the COVID-19 pandemic.

In addition, we urge you to include disability status, socioeconomic status, and primary language in the "other relevant characteristics" category of the required reports. People with disabilities are at elevated risk for complications from COVID-19 because they may have underlying medical conditions or need close contact with others to meet their basic needs. In some cases, state policies have prioritized non-disabled people for scarce resources such as ventilators, leading to concerns about discrimination, while people with disabilities who live in group homes or long-term care facilities may be at increased risk for infection. It is therefore essential to closely monitor the impact of the pandemic on people with disabilities. Information about primary language and socioeconomic status are similarly crucial to identifying disparate impacts and targeting resources appropriately. The intersections of race or ethnicity, disability, and socioeconomic status can also provide important nuance to our interpretation of this data and help to share accurate public health information with affected communities.

We also know that data alone are not enough. As we learn more about the inequities in how different communities are experiencing this pandemic, the federal government has a responsibility to direct support, information, and resources to the communities that are being hit the hardest. We strongly urge the CDC and other relevant agencies and community leaders to launch public information campaigns that speak to the specific needs of communities of color and people with disabilities. Given the history of mistrust of the medical system in many communities of color, often stemming from generations of mistreatment, it is essential to enlist trusted messengers to communicate the importance of taking appropriate preventative measures and seeking treatment.

We know that the disparities in our society did not begin with the COVID-19 pandemic, but this crisis has exposed the deep inequality in the health and economic security of our communities. It is therefore essential to use all available data to identify the disproportionate impact on marginalized communities and to let this data guide our response, by mobilizing resources to the communities that are most in need. We continue to urge the CDC to make this a priority and look forward to working with your agency to continue providing it the resources it needs to make this effort successful.

Thank you for your attention to this urgent matter.