II 

117TH CONGRESS 

1ST SESSION S. 512 

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 

MARCH 1, 2021 

Ms. WARREN (for herself, Ms. BALDWIN, Mr. BLUMENTHAL, Mr. BOOKER, 

Mr. KAINE, Ms. KLOBUCHAR, Mr. MARKEY, Mr. MERKLEY, Ms. ROSEN, 

Ms. STABENOW, Mr. VAN HOLLEN, 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 of 2021’’. 

6 SEC. 2. FINDINGS. 

7 Congress makes the following findings: 

8 (1) The World Health Organization (WHO) de9 clared COVID–19 a ‘‘Public Health Emergency of 


pbinns on DSKJLVW7X2PROD with BILLS
2 

•S 512 IS

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

2 late January 2021, there have been over 22,000,000 

3 confirmed cases of, and 383,351 deaths associated 

4 with, COVID–19 in the United States. 

5 (2) From the beginning of this pandemic, 

6 Black, Brown, and American Indian/Alaska Native 

7 (in this section referred to as ‘‘AI/AN’’) people in 

8 the United States have suffered the largest burden 

9 of illness, hospitalization, and death from COVID– 

10 19. The Centers for Disease Control and Prevention 

11 (CDC) reports that AI/AN people are 4 times as 

12 likely as White people to be hospitalized for COVID– 

13 19, and that Black and Hispanic/Latino people are 

14 2.8 times as likely to die of COVID–19 as White 

15 people. 

16 (3) Historically, structures and systems such as 

17 racism, ableism, and class oppression have rendered 

18 affected Black and Brown communities more vulner19 able to inequities and have prevented people from 

20 achieving optimal health even when there is not a 

21 crisis of pandemic proportions, highlighting that rac22 ism and not race presents as a risk factor driving 

23 inequities in illness and death. 

24 (4) Significant differences in access to health 

25 care, specifically to primary health care providers, 


pbinns on DSKJLVW7X2PROD with BILLS
3 

•S 512 IS

1 health care information, and greater perceived dis2 crimination in health care place Black, Brown, and 

3 AI/AN communities, individuals with disabilities, 

4 and Limited English Proficient individuals at great5 er risk of receiving delayed, and perhaps poorer, 

6 health care. 

7 (5) Stark racial inequities across the United 

8 States, including unequal access to stable housing, 

9 quality education, and decent employment, signifi10 cantly impact the ability of Black, Hispanic/Latinx, 

11 and AI/AN individuals to take care of their most 

12 basic health needs. Black and Brown communities 

13 are more likely to experience homelessness and 

14 struggle with low-paying jobs or unemployment. An 

15 analysis by the University of New Hampshire found 

16 that in every month between March and August 

17 2020, Black and Latino workers had significantly 

18 higher unemployment rates than White workers, 

19 even after adjusting for age and education status. 

20 (6) Black, Hispanic/Latinx, and AI/AN commu21 nities experience higher rates of chronic disease and 

22 disabilities, such as diabetes, hypertension, and asth23 ma, than non-Hispanic White communities, which 

24 predisposes them to greater risk of complications 

25 and mortality should they contract COVID–19. 


pbinns on DSKJLVW7X2PROD with BILLS
4 

•S 512 IS

1 (7) Research experts recognize that there are 

2 underlying differences in illness and death when 

3 each of these factors is examined through socio4 economic and racial or ethnic lenses. These socially 

5 determinant factors of health accelerate disease and 

6 degradation. 

7 (8) Language barriers are highly correlated 

8 with medication noncompliance and inconsistent en9 gagement with health systems. Without language ac10 cessibility data and research around COVID–19, 

11 communities with limited English proficiency are 

12 less likely to receive critical testing and preventive 

13 health services. Yet, to date, the Centers for Disease 

14 Control and Prevention does not disseminate 

15 COVID–19 messaging in critical languages, includ16 ing Mandarin Chinese, Spanish, and Korean within 

17 the same timeframe as information in English de18 spite requirements to ensure limited English pro19 ficient populations are not discriminated against 

20 under title VI of the Civil Rights Act of 1964 and 

21 subsequent laws and Federal policies. 

22 (9) Further, it is critical to disaggregate data 

23 further by ancestry to address disparities among 

24 Asian American, Native Hawaiian, and Pacific Is25 lander groups. According to the National Equity 


pbinns on DSKJLVW7X2PROD with BILLS
5 

•S 512 IS

1 Atlas, while 13 percent of the Asian population over2 all lived in poverty in 2015, 39 percent of Burmese 

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

4 of Pacific Islanders lived in poverty. 

5 (10) Utilizing disaggregation of enrollment in 

6 Affordable Care Act-sponsored health insurance, the 

7 Asian and Pacific Islander American Health Forum 

8 found that prior to the passage of the Patient Pro9 tection and Affordable Care Act (Public Law 111– 

10 148), Korean Americans had a high uninsured rate 

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

12 Asian Americans. Developing targeted outreach ef13 forts assisted 1,000,000 people and resulted in a 56 

14 percent decrease in the uninsured among the Asian, 

15 Native Hawaiian, and Pacific Islander population. 

16 Such efforts show that disaggregated data is essen17 tial to public health mobilizations efforts. 

18 (11) Without clear understanding of how 

19 COVID–19 impacts marginalized racial and ethnic 

20 communities, there will be exacerbated risk of en21 dangering the most historically vulnerable of our 

22 Nation. A recent national study found that Amer23 ican Indian/Alaska Natives were 3.5 times more like24 ly to be infected with COVID–19, however that data 

25 excluded 27 States as they had reported less than 70 


pbinns on DSKJLVW7X2PROD with BILLS
6 

•S 512 IS

1 percent of race/ethnicity data to the Centers for Dis2 ease Control and Prevention making it impossible to 

3 include them in the analysis thus creating a signifi4 cant data gap for understanding the impact of 

5 COVID–19 on this vulnerable population. 

6 (12) The consequences of misunderstanding the 

7 racial and ethnic impact of COVID–19 expound be8 yond communities of color such that it would impact 

9 all. 

10 (13) Race and ethnicity are valuable research 

11 and practice variables when used and interpreted ap12 propriately. Health data collected on patients by 

13 race and ethnicity will boost and more efficiently di14 rect critical resources and inform risk communica15 tion development in languages and at appropriate 

16 health literacy levels, which resonate with historically 

17 vulnerable communities of color. 

18 (14) To date, race and ethnicity data on 

19 COVID–19 cases, test, hospitalizations, deaths, and 

20 vaccinations is incomplete and lacking. The incon21 sistency of data collection by Federal, State, and 

22 local health authorities poses a threat to analysis 

23 and synthesis of the pandemic impact on Black, His24 panic/Latinx, and AI/AN communities. However, re25 search and medical experts of Historically Black 


pbinns on DSKJLVW7X2PROD with BILLS
7 

•S 512 IS

1 Colleges and Universities and Tribal Colleges and 

2 Universities, academic health care institutions which 

3 are historically and geographically embedded in 

4 minoritized and marginalized communities, generally 

5 also possess rapport with the communities they 

6 serve. They are well-positioned, as trusted thought 

7 leaders and health care service providers, to collect 

8 data and conduct research toward creating holistic 

9 solutions to remedy the inequitable impact of this 

10 and future public health crises. 

11 (15) Well-designed, ethically sound research 

12 aligns with the goals of medicine, addresses ques13 tions relevant to the population among whom the 

14 study will be carried out, balances the potential for 

15 benefit against the potential for harm, employs 

16 study designs that will yield scientifically valid and 

17 significant data, and generates useful knowledge. 

18 (16) The dearth of racially and ethnically 

19 disaggregated data reflecting the health of Black, 

20 Hispanic/Latinx, and AI/AN communities underlies 

21 the challenges of a fully informed public health re22 sponse. 

23 (17) Without collecting race and ethnicity data 

24 associated with COVID–19 vaccinations, testing, 

25 hospitalizations, morbidities, and mortalities, as well 


pbinns on DSKJLVW7X2PROD with BILLS
8 

•S 512 IS

1 as publicly disclosing it, Black, Hispanic/Latinx, and 

2 AI/AN communities will remain at greater risk of 

3 disease and death. 

4 SEC. 3. EMERGENCY FUNDING FOR FEDERAL DATA COL5 LECTION ON THE RACIAL, ETHNIC, AND 

6 OTHER DEMOGRAPHIC DISPARITIES OF 

7 COVID–19. 

8 To conduct or support data collection on the racial, 

9 ethnic, and other demographic implications of COVID–19 

10 in the United States and its territories, including support 

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

12 health departments to collect and transmit racial, ethnic, 

13 and other demographic data to the relevant Department 

14 of Health and Human Services agencies, there is author15 ized to be appropriated— 

16 (1) to the Centers for Disease Control and Pre17 vention, $12,000,000; 

18 (2) to State and territorial public health agen19 cies, distributed proportionally based on the total 

20 population of their residents who are enrolled in 

21 Medicaid or who have no health insurance, 

22 $15,000,000; 

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

24 and Tribal organizations (as defined in section 4 of 

25 the Indian Self-Determination and Education AssistVerDate Sep 11 2014 06:08 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\S512.IS S512

pbinns on DSKJLVW7X2PROD with BILLS
9 

•S 512 IS

1 ance Act), and urban Indian organizations (as de2 fined in section 4 of the Indian Health Care Im3 provement Act), $3,000,000; 

4 (4) to the Centers for Medicare & Medicaid 

5 Services, $5,000,000; 

6 (5) to the Food and Drug Administration, 

7 $5,000,000; 

8 (6) to the Agency for Healthcare Research and 

9 Quality, $5,000,000; and 

10 (7) to the Office of the National Coordinator 

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

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

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

14 and Human Services (referred to in this Act as the ‘‘Sec15 retary’’), acting through the Director of the Centers for 

16 Disease Control and Prevention and the Administrator of 

17 the Centers for Medicare & Medicaid Services, shall make 

18 publicly available on the website of the Centers for Disease 

19 Control and Prevention data collected across all surveil20 lance systems relating to COVID–19, disaggregated by 

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

22 status, disability status, and county, including the fol23 lowing: 


pbinns on DSKJLVW7X2PROD with BILLS
10 

•S 512 IS

1 (1) Data related to all COVID–19 testing, in2 cluding the number of individuals tested and the 

3 number of tests that were positive. 

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

5 including hospitalizations and intensive care unit ad6 missions. 

7 (3) Data related to COVID–19 outcomes, in8 cluding total fatalities and case fatality rates (ex9 pressed as the proportion of individuals who were in10 fected with COVID–19 and died from the virus). 

11 (4) Data related to COVID–19 vaccinations, in12 cluding— 

13 (A) the number of vaccines administered; 

14 (B) the number of vaccinations offered, ac15 cepted, and refused; 

16 (C) the most common reasons for refusal; 

17 and 

18 (D) the percentage of vaccine doses allo19 cated and administered to each priority group. 

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

21 practicable, data collection under this section shall follow 

22 standards developed by the Department of Health and 

23 Human Services Office of Minority Health and be col24 lected, analyzed, and reported in accordance with the 

25 standards promulgated by the Assistant Secretary for 


pbinns on DSKJLVW7X2PROD with BILLS
11 

•S 512 IS

1 Planning and Evaluation under title XXXI of the Public 

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

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

4 section shall be updated on a daily basis throughout the 

5 public health emergency. 

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

7 the Secretary shall take all necessary steps to protect the 

8 privacy of individuals whose information is included in 

9 such data, including— 

10 (1) complying with privacy protections provided 

11 under the regulations promulgated under section 

12 264(c) of the Health Insurance Portability and Ac13 countability Act of 1996; and 

14 (2) protections from all inappropriate internal 

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

16 data, including use of such data in determinations of 

17 eligibility (or continued eligibility) in health plans, 

18 and from inappropriate uses. 

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

20 Service shall consult with Indian Tribes and confer with 

21 urban Indian organizations on data collection and report22 ing for purposes of this Act. 

23 (f) SUMMARY.—Not later than 60 days after the date 

24 on which the Secretary certifies that the public health 

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


pbinns on DSKJLVW7X2PROD with BILLS
12 

•S 512 IS

1 shall make publicly available a summary of the final statis2 tics related to COVID–19. 

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

4 on which the Secretary certifies that the public health 

5 emergency related to COVID–19 has ended, the Depart6 ment of Health and Human Services shall compile and 

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

8 and Pensions and the Committee on Finance of the Senate 

9 and the Committee on Energy and Commerce and the 

10 Committee on Ways and Means of the House of Rep11 resentatives a preliminary report— 

12 (1) describing the testing, hospitalization, mor13 tality rates, vaccination rates, and preferred lan14 guage of patients associated with COVID–19 by race 

15 and ethnicity; and 

16 (2) proposing evidenced-based response strate17 gies to safeguard the health of these communities in 

18 future pandemics. 

19 (h) TRIBAL EXCEPTION.—Indian Tribes may opt out 

20 of any of the requirements of this section. 

21 SEC. 5. COMMISSION ON ENSURING DATA FOR HEATH EQ22 UITY. 

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

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

25 a commission, to be known as the ‘‘Commission on EnsurVerDate Sep 11 2014 06:08 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00012 Fmt 6652 Sfmt 6201 E:\BILLS\S512.IS S512

pbinns on DSKJLVW7X2PROD with BILLS
13 

•S 512 IS

1 ing Data for Heath Equity’’ (referred to in this section 

2 as the ‘‘Commission’’) to provide clear and robust guid3 ance on how to improve the collection, analysis, and use 

4 of demographic data in responding to future public health 

5 emergencies. 

6 (b) MEMBERSHIP AND CHAIRPERSON.— 

7 (1) MEMBERSHIP.—The Commission shall be 

8 composed of— 

9 (A) the Director of the Centers for Disease 

10 Control and Prevention; 

11 (B) the Director of the National Institutes 

12 of Health; 

13 (C) the Commissioner of Food and Drugs; 

14 (D) the Administrator of the Federal 

15 Emergency Management Agency; 

16 (E) the Director of the National Institute 

17 on Minority Health and Health Disparities; 

18 (F) the Director of the Indian Health 

19 Service; 

20 (G) the Administrator of the Centers for 

21 Medicare & Medicaid Services; 

22 (H) the Director of the Agency for 

23 Healthcare Research and Quality; 

24 (I) the Surgeon General; 


pbinns on DSKJLVW7X2PROD with BILLS
14 

•S 512 IS

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, or an urban Indian 

12 health representative, who shall represent juris13 dictions from different regions of the United 

14 States with relatively high concentrations of 

15 historically marginalized populations, to be ap16 pointed by the Secretary; and 

17 (O) at least 3 independent experts of ra18 cially and ethnically diverse representation with 

19 knowledge or field experience with racial and 

20 ethnic disparities in public health appointed by 

21 the Secretary. 

22 (2) CHAIRPERSON.—The President of the Na23 tional Academies of Sciences, Engineering, and Med24 icine, or designee, shall serve as the chairperson of 

25 the Commission. 


pbinns on DSKJLVW7X2PROD with BILLS
15 

•S 512 IS

1 (c) DUTIES.—The Commission shall— 

2 (1) examine barriers to collecting, analyzing, 

3 and using demographic data; 

4 (2) determine how to best use such data to pro5 mote health equity across the United States and re6 duce racial, Tribal, and other demographic dispari7 ties in health outcomes; 

8 (3) gather available data related to treatment of 

9 individuals with disabilities during the COVID–19 

10 pandemic and other public health emergencies, in11 cluding access to vaccinations, denial of treatment 

12 for pre-existing conditions, removal or denial of dis13 ability related equipment (including ventilators and 

14 CPAP machines), and data on completion of DNR 

15 orders, and identify barriers to obtaining accurate 

16 and timely data related to treatment of such individ17 uals; 

18 (4) solicit input from public health officials, 

19 community-connected organizations, health care pro20 viders, State and local agency officials, Tribal offi21 cials, and other experts on barriers to, and best 

22 practices for, collecting demographic data; and 

23 (5) recommend policy changes that the data in24 dicates are necessary to reduce disparities. 


pbinns on DSKJLVW7X2PROD with BILLS
16 

•S 512 IS

1 (d) REPORT.—Not later than 1 year after the date 

2 of enactment of this Act, the Commission shall submit a 

3 written report of its findings and recommendations to 

4 Congress and post such report on the website of the De5 partment of Health and Human Services. Such reports 

6 shall contain information concerning— 

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

8 Tribal capacity to conduct public health research on 

9 COVID–19 and in future public health emergencies, 

10 with a focus on expanded capacity to analyze data 

11 on disparities correlated with race, ethnicity, income, 

12 sex, age, disability status, specific geographic areas, 

13 and other relevant demographic characteristics, and 

14 an analysis of what demographic data is currently 

15 being collected, the accuracy of that data and any 

16 gaps, how this data is currently being used to inform 

17 efforts to combat COVID–19, and what resources 

18 are needed to supplement existing public health data 

19 collection; 

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

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

22 that maintains individual privacy while helping di23 rect the State, local, and Tribal response to public 

24 health emergencies; 


pbinns on DSKJLVW7X2PROD with BILLS
17 

•S 512 IS

1 (3) how to improve demographic data collection 

2 related to COVID–19 and other public health emer3 gencies in the short- and long-term, including how to 

4 continue to grow and value the Tribal sovereignty of 

5 data and information concerning urban and rural 

6 Tribal communities; 

7 (4) to the extent possible, an analysis of racial 

8 and other demographic disparities in COVID–19 

9 mortality, including an analysis of comorbidities and 

10 case fatality rates; 

11 (5) to the extent possible, an analysis of sex, 

12 gender, sexual orientation, and gender identity dis13 parities in COVID–19 treatment and mortality; 

14 (6) an analysis of COVID–19 treatment of indi15 viduals with disabilities, including equity of access to 

16 treatment and equipment and intersections of dis17 ability status with other demographic factors, includ18 ing race, and recommendations for how to improve 

19 transparency and equity of treatment for such indi20 viduals during the COVID–19 public health emer21 gency and future emergencies; 

22 (7) how to support State, local, and Tribal ca23 pacity to eliminate barriers to vaccinations, testing, 

24 and treatment during the COVID–19 pandemic and 

25 future public health emergencies; and 


pbinns on DSKJLVW7X2PROD with BILLS
18 

•S 512 IS

1 (8) to the extent possible, an analysis of Fed2 eral Government policies that disparately exacerbate 

3 the COVID–19 impact, and recommendations to im4 prove racial and other demographic disparities in 

5 health outcomes. 

6 (e) AUTHORIZATION OF APPROPRIATIONS.—There is 

7 authorized to be appropriated such sums as may be nec8 essary to carry out this section. 

Æ 


pbinns on DSKJLVW7X2PROD with BILLS