II 

116TH CONGRESS 

2D SESSION S. 3850 

To require the Centers for Disease Control and Prevention to collect and 

report certain data concerning COVID–19. 

IN THE SENATE OF THE UNITED STATES 

JUNE 1, 2020 

Ms. WARREN (for herself, Ms. HARRIS, Mr. BOOKER, Mr. MARKEY, Mr. 

MERKLEY, Mr. DURBIN, Mr. VAN HOLLEN, Ms. BALDWIN, Mr. CARPER, 

Mr. KAINE, Mr. CARDIN, Ms. KLOBUCHAR, Mr. SANDERS, Mr. WHITEHOUSE, Mr. BLUMENTHAL, Mr. BROWN, Mr. WARNER, Ms. STABENOW, 

Mr. PETERS, and Mr. WYDEN) introduced the following bill; which was 

read twice and referred to the Committee on Health, Education, Labor, 

and Pensions 

A BILL 

To require the Centers for Disease Control and Prevention 

to collect and report certain data concerning COVID–19. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Equitable Data Collec5 tion and Disclosure on COVID-19 Act’’. 

6 SEC. 2. FINDINGS. 

7 Congress makes the following findings: 


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1 (1) The World Health Organization (WHO) de2 clared COVID–19 a ‘‘Public Health Emergency of 

3 International Concern’’ on January 30, 2020. By 

4 late March 2020, there have been over 470,000 con5 firmed cases of, and 20,000 deaths associated with, 

6 COVID–19 worldwide. 

7 (2) In the United States, cases of COVID–19 

8 have quickly surpassed those across the world, and 

9 as of April 12, 2020, over 500,000 cases and 20,000 

10 deaths have been reported in the United States 

11 alone. 

12 (3) Early reporting on racial inequities in 

13 COVID–19 testing and treatment has renewed calls 

14 for the Centers for Disease Control and Prevention 

15 and other relevant subagencies within the Depart16 ment of Health and Human Services to publicly re17 lease racial and demographic information to better 

18 inform the pandemic response, specifically in com19 munities of color and in Limited English Proficient 

20 (LEP) communities. 

21 (4) The burden of morbidity and mortality in 

22 the United States has historically fallen dispropor23 tionately on marginalized communities (those who 

24 suffer the most from great public health needs and 

25 are the most medically underserved). 


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1 (5) Historically, structures and systems such as 

2 racism, ableism and class oppression, have rendered 

3 affected individuals more vulnerable to inequities 

4 and have prevented people from achieving optimal 

5 health even when there is not a crisis of pandemic 

6 proportions. 

7 (6) Significant differences in access to health 

8 care, specifically to primary health care providers, 

9 health care information, and greater perceived dis10 crimination in health care place communities of 

11 color, individuals with disabilities, and LEP individ12 uals at greater risk of receiving delayed, and per13 haps poorer, health care. 

14 (7) Stark racial inequities across the United 

15 States, including unequal access to stable housing, 

16 quality education, and decent employment, signifi17 cantly impact the ability of individuals to take care 

18 of their most basic health needs. Communities of 

19 color are more likely to experience homelessness and 

20 struggle with low-paying jobs or unemployment. To 

21 date, experts have cited that 2 in 5 Latino residents 

22 in New York City, the current epicenter of the 

23 COVID–19 pandemic, are recently unemployed as a 

24 direct consequence of COVID–19. And at a time 

25 when sheltering in place will save lives, less than 1 


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1 in 5 Black workers and roughly 1 in 6 Latino work2 ers are able to work from home. 

3 (8) Communities of color experience higher 

4 rates of chronic disease and disabilities, such as dia5 betes, hypertension, and asthma, than non-Hispanic 

6 White communities, which predisposes them to 

7 greater risk of complications and mortality should 

8 they contract COVID–19. 

9 (9) Such communities are made even more vul10 nerable to the uncertainty of the preparation, re11 sponse, and events surrounding the pandemic public 

12 health crisis, COVID–19. For instance, in the recent 

13 past, multiple epidemiologic studies and reviews have 

14 reported higher rates of hospitalization due to the 

15 2009 H1N1 pandemic among the poor, individuals 

16 with disabilities and preexisting conditions, those liv17 ing in impoverished neighborhoods, and individuals 

18 of color and marginalized ethnic backgrounds in the 

19 United States. These findings highlight the urgency 

20 to adapt the COVID–19 response to monitor and act 

21 on these inequities via data collection and research 

22 by race and ethnicity. 

23 (10) Research experts recognize that there are 

24 underlying differences in illness and death when 

25 each of these factors is examined through socioVerDate Sep 11 2014 16:11 Jun 19, 2020 Jkt 099200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\S3850.IS S3850

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1 economic and racial or ethnic lenses. These socially 

2 determinant factors of health accelerate disease and 

3 degradation. 

4 (11) Language barriers are highly correlated 

5 with medication noncompliance and inconsistent en6 gagement with health systems. Without language ac7 cessibility data and research around COVID–19, 

8 these communities are less likely to receive critical 

9 testing and preventive health services. Yet, to date, 

10 the Centers for Disease Control and Prevention does 

11 not disseminate COVID–19 messaging in critical 

12 languages, including Mandarin Chinese, Spanish, 

13 and Korean within the same timeframe as informa14 tion in English despite requirements to ensure lim15 ited English proficient populations are not discrimi16 nated against under title VI of the Civil Rights Act 

17 of 1964 and subsequent laws and Federal policies. 

18 (12) Further, it is critical to disaggregate data 

19 further by ancestry to address disparities among 

20 Asian American, Native Hawaiian, and Pacific Is21 lander groups. According to the National Equity 

22 Atlas, while 13 percent of the Asian population over23 all lived in poverty in 2015, 39 percent of Burmese 

24 people, 29 percent of Hmong people, and 21 percent 

25 of Pacific Islanders lived in poverty. 


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1 (13) Utilizing disaggregation of enrollment in 

2 Affordable Care Act-sponsored health insurance, the 

3 Asian and Pacific Islander American Health Forum 

4 found that prior to the passage of the Patient Pro5 tection and Affordable Care Act (Public Law 111– 

6 148), Korean Americans had a high uninsured rate 

7 of 23 percent, compared to just 12 percent for all 

8 Asian Americans. Developing targeted outreach ef9 forts assisted 1,000,000 people and resulted in a 56- 

10 percent decrease in the uninsured among the Asian, 

11 Native Hawaiian, and Pacific Islander population. 

12 Such efforts show that disaggregated data is essen13 tial to public health mobilizations efforts. 

14 (14) Without clear understanding of how 

15 COVID–19 impacts marginalized racial and ethnic 

16 communities, there will be exacerbated risk of en17 dangering the most historically vulnerable of our 

18 Nation. 

19 (15) The consequences of misunderstanding the 

20 racial and ethnic impact of COVID–19 expound be21 yond communities of color such that it would impact 

22 all. 

23 (16) Race and ethnicity are valuable research 

24 and practice variables when used and interpreted ap25 propriately. Health data collected on patients by 


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1 race and ethnicity will boost and more efficiently di2 rect critical resources and inform risk communica3 tion development in languages and at appropriate 

4 health literacy levels, which resonate with historically 

5 vulnerable communities of color. 

6 (17) To date, there is no public standardized 

7 and comprehensive race and ethnicity data reposi8 tory of COVID–19 testing, hospitalizations, or mor9 tality. The inconsistency of data collection by Fed10 eral, State, and local health authorities, and the in11 ability to access data by public research institutions 

12 and academic organizations, poses a threat to anal13 ysis and synthesis of the pandemic impact on com14 munities of color. However, research and medical ex15 perts of Historically Black Colleges and Universities, 

16 academic health care institutions which are histori17 cally and geographically embedded in minoritized 

18 and marginalized communities, generally also pos19 sess rapport with the communities they serve. They 

20 are well-positioned, as trusted thought leaders and 

21 health care service providers, to collect data and con22 duct research toward creating holistic solutions to 

23 remedy the inequitable impact of this and future 

24 public health crises. 


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1 (18) Well-designed, ethically sound research 

2 aligns with the goals of medicine, addresses ques3 tions relevant to the population among whom the 

4 study will be carried out, balances the potential for 

5 benefit against the potential for harm, employs 

6 study designs that will yield scientifically valid and 

7 significant data, and generates useful knowledge. 

8 (19) The dearth of racially and ethnically 

9 disaggregated data reflecting the health of commu10 nities of color underlies the challenges of a fully in11 formed public health response. 

12 (20) Without collecting race and ethnicity data 

13 associated with COVID–19 testing, hospitalizations, 

14 morbidities, and mortalities, as well as publicly dis15 closing it, communities of color will remain at great16 er risk of disease and death. 

17 SEC. 3. EMERGENCY FUNDING FOR FEDERAL DATA COL18 LECTION ON THE RACIAL, ETHNIC, AND 

19 OTHER DEMOGRAPHIC DISPARITIES OF 

20 COVID–19. 

21 To conduct or support data collection on the racial, 

22 ethnic, and other demographic implications of COVID–19 

23 in the United States and its territories, including support 

24 to assist in the capacity building for State and local public 

25 health departments to collect and transmit racial, ethnic, 


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1 and other demographic data to the relevant Department 

2 of Health and Human Services agencies, there is author3 ized to be appropriated— 

4 (1) to the Centers for Disease Control and Pre5 vention, $12,000,000; 

6 (2) to State and territorial public health agen7 cies, distributed proportionally based on the total 

8 population of their residents who are enrolled in 

9 Medicaid or who have no health insurance, 

10 $15,000,000; 

11 (3) to the Indian Health Service, Indian Tribes 

12 and Tribal organizations (as defined in section 4 of 

13 the Indian Self-Determination and Education Assist14 ance Act), and urban Indian organizations (as de15 fined in section 4 of the Indian Health Care Im16 provement Act), $3,000,000; 

17 (4) to the Centers for Medicare & Medicaid 

18 Services, $5,000,000; 

19 (5) to the Food and Drug Administration, 

20 $5,000,000; 

21 (6) to the Agency for Healthcare Research and 

22 Quality, $5,000,000; and 

23 (7) to the Office of the National Coordinator 

24 for Health Information Technology, $5,000,000. 


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1 SEC. 4. COVID–19 DATA COLLECTION AND DISCLOSURE. 

2 (a) DATA COLLECTION.—The Secretary of Health 

3 and Human Services (referred to in this Act as the ‘‘Sec4 retary’’), acting through the Director of the Centers for 

5 Disease Control and Prevention and the Administrator of 

6 the Centers for Medicare & Medicaid Services, shall make 

7 publicly available on the website of the Centers for Disease 

8 Control and Prevention data collected across all surveil9 lance systems relating to COVID–19, disaggregated by 

10 race, ethnicity, sex, age, primary language, socioeconomic 

11 status, disability status, and county, including the fol12 lowing: 

13 (1) Data related to all COVID–19 testing, in14 cluding the number of individuals tested and the 

15 number of tests that were positive. 

16 (2) Data related to treatment for COVID–19, 

17 including hospitalizations and intensive care unit ad18 missions. 

19 (3) Data related to COVID–19 outcomes, in20 cluding total fatalities and case fatality rates (ex21 pressed as the proportion of individuals who were in22 fected with COVID–19 and died from the virus). 

23 (b) APPLICATION OF STANDARDS.—To the extent 

24 practicable, data collection under this section shall follow 

25 standards developed by the Department of Health and 

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1 lected, analyzed, and reported in accordance with the 

2 standards promulgated by the Assistant Secretary for 

3 Planning and Evaluation under title XXXI of the Public 

4 Health Service Act (42 U.S.C. 300kk et seq.). 

5 (c) TIMELINE.—The data made available under this 

6 section shall be updated on a daily basis throughout the 

7 public health emergency. 

8 (d) PRIVACY.—In publishing data under this section, 

9 the Secretary shall take all necessary steps to protect the 

10 privacy of individuals whose information is included in 

11 such data, including— 

12 (1) complying with privacy protections provided 

13 under the regulations promulgated under section 

14 264(c) of the Health Insurance Portability and Ac15 countability Act of 1996; and 

16 (2) protections from all inappropriate internal 

17 use by an entity that collects, stores, or receives the 

18 data, including use of such data in determinations of 

19 eligibility (or continued eligibility) in health plans, 

20 and from inappropriate uses. 

21 (e) INDIAN HEALTH SERVICE.—The Indian Health 

22 Service shall consult with Indian Tribes and confer with 

23 urban Indian organizations on data collection and report24 ing for purposes of this Act. 


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1 (f) REPORT.—Not later than 60 days after the date 

2 on which the Secretary certifies that the public health 

3 emergency related to COVID–19 has ended, the Secretary 

4 shall make publicly available a summary of the final statis5 tics related to COVID–19. 

6 (g) REPORT.—Not later than 60 days after the date 

7 on which the Secretary certifies that the public health 

8 emergency related to COVID–19 has ended, the Depart9 ment of Health and Human Services shall compile and 

10 submit to the Committee on Health, Education, Labor, 

11 and Pensions and the Committee on Finance of the Senate 

12 and the Committee on Energy and Commerce and the 

13 Committee on Ways and Means of the House of Rep14 resentatives a preliminary report— 

15 (1) describing the testing, hospitalization, mor16 tality rates, and preferred language of patients asso17 ciated with COVID–19 by race and ethnicity; and 

18 (2) proposing evidenced-based response strate19 gies to safeguard the health of these communities in 

20 future pandemics. 

21 SEC. 5. COMMISSION ON ENSURING HEATH EQUITY DUR22 ING THE COVID–19 PUBLIC HEALTH EMER23 GENCY. 

24 (a) IN GENERAL.—Not later than 30 days after the 

25 date of enactment of this Act, the Secretary shall establish 


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1 a commission, to be known as the ‘‘Commission on Ensur2 ing Heath Equity During the COVID–19 Public Health 

3 Emergency’’ (referred to in this section as the ‘‘Commis4 sion’’) to provide clear and robust guidance on how to im5 prove the collection, analysis, and use of demographic data 

6 in responding to future waves of the coronavirus. 

7 (b) MEMBERSHIP AND CHAIRPERSON.— 

8 (1) MEMBERSHIP.—The Commission shall be 

9 composed of— 

10 (A) the Director of the Centers for Disease 

11 Control and Prevention; 

12 (B) the Director of the National Institutes 

13 of Health; 

14 (C) the Commissioner of Food and Drugs; 

15 (D) the Administrator of the Federal 

16 Emergency Management Agency; 

17 (E) the Director of the National Institute 

18 on Minority Health and Health Disparities; 

19 (F) the Director of the Indian Health 

20 Service; 

21 (G) the Administrator of the Centers for 

22 Medicare & Medicaid Services; 

23 (H) the Director of the Agency for 

24 Healthcare Research and Quality; 

25 (I) the Surgeon General; 


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1 (J) the Administrator of the Health Re2 sources and Services Administration; 

3 (K) the Director of the Office of Minority 

4 Health; 

5 (L) the Director of the Office of Women’s 

6 Health; 

7 (M) the Chairperson of the National Coun8 cil on Disability; 

9 (N) at least 4 State, local, territorial, and 

10 Tribal public health officials representing de11 partments of public health, who shall represent 

12 jurisdictions from different regions of the 

13 United States with relatively high concentra14 tions of historically marginalized populations, to 

15 be appointed by the Secretary; and 

16 (O) racially and ethnically diverse rep17 resentation from at least 3 independent experts 

18 with knowledge or field experience with racial 

19 and ethnic disparities in public health appointed 

20 by the Secretary. 

21 (2) CHAIRPERSON.—The President of the Na22 tional Academies of Sciences, Engineering, and Med23 icine, or designee, shall serve as the chairperson of 

24 the Commission. 

25 (c) DUTIES.—The Commission shall— 


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1 (1) examine barriers to collecting, analyzing, 

2 and using demographic data; 

3 (2) determine how to best use such data to pro4 mote health equity across the United States and re5 duce racial, Tribal, and other demographic dispari6 ties in COVID–19 prevalence and outcomes; 

7 (3) gather available data related to COVID–19 

8 treatment of individuals with disabilities, including 

9 denial of treatment for pre-existing conditions, re10 moval or denial of disability related equipment (in11 cluding ventilators and CPAP machines), and data 

12 on completion of DNR orders, and identify barriers 

13 to obtaining accurate and timely data related to 

14 COVID–19 treatment of such individuals; 

15 (4) solicit input from public health officials, 

16 community-connected organizations, health care pro17 viders, State and local agency officials, and other ex18 perts on barriers to, and best practices for, collecting 

19 demographic data; and 

20 (5) recommend policy changes that the data in21 dicates are necessary to reduce disparities. 

22 (d) REPORT.—Not later than 60 days after the date 

23 of enactment of this Act, and every 180 days thereafter 

24 until the Secretary certifies that the public health emer25 gency related to COVID–19 has ended, the Commission 


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1 shall submit a written report of its findings and rec2 ommendations to Congress and post such report on the 

3 website of the Department of Health and Human Services. 

4 Such reports shall contain information concerning— 

5 (1) how to enhance State, local, territorial, and 

6 Tribal capacity to conduct public health research on 

7 COVID–19, with a focus on expanded capacity to 

8 analyze data on disparities correlated with race, eth9 nicity, income, sex, age, disability status, specific ge10 ographic areas, and other relevant demographic 

11 characteristics, and an analysis of what demographic 

12 data is currently being collected about COVID–19, 

13 the accuracy of that data and any gaps, how this 

14 data is currently being used to inform efforts to 

15 combat COVID–19, and what resources are needed 

16 to supplement existing public health data collection; 

17 (2) how to collect, process, and disclose to the 

18 public the data described in paragraph (1) in a way 

19 that maintains individual privacy while helping di20 rect the State and local response to the virus; 

21 (3) how to improve demographic data collection 

22 related to COVID–19 in the short- and long-term, 

23 including how to continue to grow and value the 

24 Tribal sovereignty of data and information con25 cerning Tribal communities; 


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1 (4) to the extent possible, a preliminary anal2 ysis of racial and other demographic disparities in 

3 COVID–19 mortality, including an analysis of 

4 comorbidities and case fatality rates; 

5 (5) to the extent possible, a preliminary anal6 ysis of sex, gender, sexual orientation, and gender 

7 identity disparities in COVID–19 treatment and 

8 mortality; 

9 (6) an analysis of COVID–19 treatment of indi10 viduals with disabilities, including equity of access to 

11 treatment and equipment and intersections of dis12 ability status with other demographic factors, includ13 ing race, and recommendations for how to improve 

14 transparency and equity of treatment for such indi15 viduals during the COVID–19 public health emer16 gency and future emergencies; 

17 (7) how to support State, local, and Tribal ca18 pacity to eliminate barriers to COVID–19 testing 

19 and treatment; and 

20 (8) to the extent possible, a preliminary anal21 ysis of Federal Government policies that disparately 

22 exacerbate the COVID–19 impact, and recommenda23 tions to improve racial and other demographic dis24 parities in health outcomes. 


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1 (e) AUTHORIZATION OF APPROPRIATIONS.—There is 

2 authorized to be appropriated such sums as may be nec3 essary to carry out this section. 

Æ 


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