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

April 30, 2020
Press Release

WASHINGTON – Today, Congresswomen Ayanna Pressley (D-MA), Robin Kelly (D-IL), Barbara Lee (D-CA), Chair of the Congressional Black Caucus Karen Bass (D-CA), Congressman Cedric Richmond (D-LA), and Senators Elizabeth Warren (D-MA), Kamala Harris (D-CA), Cory Booker (D-NJ), Edward J. Markey (D-MA), and Jeff Merkley (D-OR) sent letters to Vice President Mike Pence, head of the White House Coronavirus Task Force, and the Centers for Disease Control and Prevention (CDC) calling on the Administration to fill the gaps in COVID-19 demographic data and mobilize resources to the hardest hit communities.

Congresswoman Pressley and Senator Warren have repeatedly called attention to the disproportionate impact of the COVID-19 pandemic on communities of color. Along with their colleagues Kelly, Bass, Lee, Harris, Booker, Markey and Merkley, and more than 100 of their House and Senate colleagues, they introduced legislation to require the federal government to collect and release demographic data -- including race and ethnicity. They urged Congressional leadership to include their legislation in the next relief package. 

As a result of their and others' advocacy, the bill that passed Congress last week requires HHS to issue monthly reports on the data it collects related to race, ethnicity, sex, age, and geographic location of those who have been tested, hospitalized, or died from COVID-19.  This is a good first step towards understanding the impact of COVID-19, but the data HHS collects is still not comprehensive. The Members are now calling on the CDC and the White House to rectify gaps in the implementation of this new law and use the data to target resources toward the communities that are most affected.

"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 its disproportionate impact on marginalized communities, to let this data guide our response, and to mobilize resources to the communities that are most in need," wrote the lawmakers.

In their letter to CDC, the members urged the agency to work with state, tribal, and local public health systems to modernize and improve surveillance and increase our nation's capacity to collect complete, timely, and accurate data on each patient. They also asked to include disability status, socioeconomic status, and primary language in its public reporting.

The Members also raised alarm about the lack of dedicated CDC funding and resources to tribal governments and organizations to build public health infrastructure in Indian Country. They urged the CDC to work directly with the Indian Health Service (IHS) to better coordinate disease surveillance strategies in tribal and urban Indian communities, while continuing to ensure that tribal data sovereignty is respected and preserved. They also urged close collaboration with tribal governments, Tribal Epidemiology Centers, and the CDC/Agency for Toxic Substances and Disease Registry Tribal Advisory Committee.

In their letter to Vice President Pence and the Task Force, they urged for mobilizing a whole-of-government response to address the needs of affected communities, including working with trusted messengers to develop public information campaigns and prioritizing marginalized communities when distributing federal resources, including personal protective equipment (PPE), testing material, funding, and staffing. They also urged involving IHS in these efforts and meaningfully engaging with Native communities and tribal leaders, among other steps.

The Members wrote: "We also know that data alone is 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."

 

The full text of the letters is below. The letter to CDC Director Redfield can be found here and the letter to Vice President Pence can be found here.

 

Vice President Michael Pence

The White House

1600 Pennsylvania Avenue N.W.

Washington, D.C. 20050                    

 

Dear Vice President Pence:

We write to urge the White House Coronavirus Task Force to take immediate steps to address the racial disparities in coronavirus disease 2019 (COVID-19) cases and fatalities. Congress has recognized the importance of understanding these inequities by requiring the Centers for Disease Control and Prevention (CDC) to collect and disclose COVID-19 demographic data, including race and ethnicity. As we continue to gain a greater understanding of these deep-seated inequities, we strongly urge you to respond accordingly by prioritizing the communities with the highest need in the federal government’s response to the COVID-19 pandemic.

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.

As we learn more about the inequities in how different communities are experiencing this pandemic, the White House Coronavirus Task Force has a responsibility to mobilize a whole of government response to direct support, information, and resources to the communities that are being hit the hardest.

We strongly urge you to work with the CDC and other relevant agencies and community leaders to launch patient-centered and culturally and linguistically appropriate public information campaigns that speak to the specific needs of communities of color. 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. In doing so, the federal government should heed its own advice from its H1N1 pandemic retrospective: HHS recommended partnering and leveraging “community-based, faith-based, and grassroots organizations” in order “to reach hard-to-reach populations such as racial and ethnic minorities. As we begin to prepare for a future COVID-19 vaccine, now is the time to lay the groundwork for an effective vaccination campaign that protects the people who are most at risk.

We also urge you to direct the White House Coronavirus Task Force and other executive department agencies to prioritize marginalized communities when distributing federal resources, including personal protective equipment (PPE), testing material, funding, and staffing. During this public health emergency, inadequate resources will cost lives, but communities across the country are experiencing shortages of essential medical supplies. As you develop the strategic plan for testing and containment that the Paycheck Protection Program and Health Care Enhancements Act requires, we urge you to prioritize making testing easily accessible in under-served communities, including by setting up mobile testing centers in “hotspot” communities and providing adequate funding and materials to conduct rapid and timely testing for anyone who needs it. In addition, in the Task Force’s efforts to boost contact tracing efforts in states, the federal government should ensure that it is prioritizing the deployment of diverse, culturally competent, and linguistically fluent staff to areas in need. Communities of color often face shortages of health care providers and resources under normal circumstances.

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 strongly urge you and the other members of the White House Coronavirus Task Force to bring all the resources of the federal government to bear on this crisis. To help us understand how the Coronavirus Task Force plans to address racial disparities in health outcomes, we request answers to the following questions by May 13, 2020:

 

1.What public health campaign efforts has the federal government undertaken specific to communities of color?

2.What grassroots organizations and advocacy groups has the White House consulted or enlisted to guide its response addressing racial disparities in health outcomes?

3.How does the federal government factor in racial disparities in how it determines “COVID-19 hotspots,” which is then used to inform the distribution of supplies?

4.How else is the Coronavirus Task Force planning to address racial disparities in COVID-19 outcomes?

 

            Thank you for your attention to this urgent matter.

 

Robert Redfield

Director

Centers for Disease Control and Prevention

1600 Clifton Road

Atlanta, GA 30329                 

 

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.

 

 

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