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January 25, 2022

Pressley, Beyer Urge CDC to Collect, Publish Demographic Data on Prevalence of Long COVID

Text of the Letter (PDF)

WASHINGTON – Today, Congresswoman Ayanna Pressley (MA-07) and Congressman Don Beyer (VA-08) sent a letter to the Centers for Disease Control and Prevention (CDC) urging it to publicly report findings on the prevalence of Long COVID, including disaggregated demographic data. Publicly reporting this critical data will help lawmakers and researchers better understand Long COVID, the depth of its public health impact, and ensure resources are available to support those suffering from it. 

Long COVID, also referred to as post-COVID conditions and Post-Acute Sequelae of SARS CoV-2 infection (PASC), is a serious illness that can affect the function of multiple organs months after a person contracts COVID-19. According to the CDC, people living with Long COVID may experience a combination of symptoms, ranging from fatigue and brain fog to muscle pain and diarrhea to difficulty breathing and heart palpitations. 

“[I]t is critical that Congress and the American public are able to gain insight into current data and emerging trends—including an overview of the vast array of symptoms individuals may experience, disaggregated by demographic groups—in order to inform policymaking and protect the public’s health,” the lawmakers wrote in their letter to CDC Director Rochelle Walensky.

The lawmakers cited preliminary studies indicating that women are uniquely vulnerable to Long COVID and noted the disparate impact of the COVID-19 pandemic on Black, Latino and Indigenous communities—warning that Long COVID could mirror that trend. 

“To fully confront the ongoing pandemic, Congress needs disaggregated demographic data on the prevalence of Long COVID,” the lawmakers continued. “CDC must publish findings on race, ethnicity, age, gender, previous disability, and other demographic characteristics. People across the country are experiencing long-term symptoms of COVID-19, and Congress deserves answers on the size and scope of this crisis.” 

Full text of the letter is available here

Rep. Pressley has consistently advocated for disaggregated demographic data on COVID-19 to better address the pandemic’s disproportionate impact on communities of color. 

  • In March 2020, Rep. Pressley and Sen. Warren urged HHS to collect racial and ethnic demographic data on testing and treatment for COVID-19 to identify and address racial disparities.
  • In April 2020, Rep. Pressley, Sen. Markey, and Sen. Warren also sent a letter to the Centers for Medicare and Medicaid Services (CMS) calling on the agency to immediately release racial and ethnic data of Medicare beneficiaries who are tested or hospitalized for COVID-19.
  • In April 2020, Rep. Pressley and Senator Warren led their colleagues introducing the Equitable Data Collection and Disclosure on COVID-19 Act, legislation to require the federal government to collect and publicly release racial and other demographic data on COVID-19.
  • In April 2020, Rep. Pressley urged Governor Baker to rescind the Commonwealth’s proposed Crisis of Care Standards that would have disproportionately harmed Black and Brown communities and the disability community.
  • In July 2020, Congresswoman Pressley and Senator Warren wrote to the Department of Health and Human Services (HHS) asking for HHS’s report on the administration’s efforts to address racial disparities in health care access and outcomes, as required by the Patient Protection and Affordable Care Act (ACA).
  • In December 2020, at the request of Congresswoman Pressley and Senator Warren, the Government Accountability Office (GAO) agreed to investigate how COVID-19 relief funds have been distributed to disproportionately affected communities.
  • In January 2021, Rep. Pressley and Senator Warren applauded President Biden’s executive order to ensure an equitable pandemic response and recovery, which contained several provisions championed by the lawmakers.
  • In February 2021, Rep. Pressley, Senator Warren, and Senator Markey led your colleagues in re-introducing the Equitable Data Collection and Disclosure on COVID-19 Act, legislation to require the federal government to collect and publicly release racial and other demographic data on COVID-19.
  • In February 2021, Rep. Pressley, Senator Warren, and Rep. Sylvia Garcia (TX-29) reintroduced the COVID-19 in Corrections Data Transparency Act, bicameral legislation that would require the Federal Bureau of Prisons, the United States Marshals Service, and state governments to collect and publicly report detailed statistics about COVID-19 cases, hospitalizations, deaths, and vaccinations in federal, state, and local correctional facilities. 
  • In July 2021, Rep. Pressley and Senator Warren urged Governor Baker to continue reporting demographic data on COVID-19 hospitalizations.
  • In August 2021, with the new delta variant surging, Rep. Pressley called on Governor Baker to step up efforts to reduce COVID spread in Massachusetts and resume comprehensive data collection on who is contracting COVID-19.
  • In December 2021, with omicron surging, Rep. Pressley wrote to Governor Baker urging him to pursue a data-driven and holistic statewide plan to combat COVID-19 and to continue publishing comprehensive, disaggregated data on vaccination rates and COVID infection, including breakthrough cases.
  • In December 2021, Rep. Pressley and Sens. Warren and Markey wrote to CDC and HHS urging them to monitor, report, and address racial and other ethnic demographic disparities in breakthrough COVID-19 cases nationwide.