I 

117TH CONGRESS 

1ST SESSION H. R. 1370 

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

report certain data concerning COVID–19. 

IN THE HOUSE OF REPRESENTATIVES 

FEBRUARY 25, 2021 

Ms. PRESSLEY (for herself, Ms. LEE of California, Ms. BASS, Ms. KELLY of 

Illinois, Mrs. LAWRENCE, Mr. MEEKS, Mr. ESPAILLAT, Ms. OCASIO-CORTEZ, Mr. EVANS, Ms. TLAIB, Mrs. WATSON COLEMAN, Ms. MENG, Ms. 

BLUNT ROCHESTER, Mr. MFUME, Mr. JOHNSON of Georgia, Ms. CLARKE

of New York, Ms. DEGETTE, Ms. NORTON, Ms. JAYAPAL, and Mrs. 

DEMINGS) introduced the following bill; which was referred to the Committee on Energy and Commerce, and in addition to the Committee on 

Natural Resources, for a period to be subsequently determined by the 

Speaker, in each case for consideration of such provisions as fall within 

the jurisdiction of the committee concerned 

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’’. 


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1 SEC. 2. FINDINGS. 

2 Congress makes the following findings: 

3 (1) The World Health Organization (WHO) de4 clared COVID–19 a ‘‘Public Health Emergency of 

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

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

7 confirmed cases of, and 383,351 deaths associated 

8 with, COVID–19 in the United States. 

9 (2) From the beginning of this pandemic, 

10 Black, Brown, and American Indian/Alaska Native 

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

12 the United States have suffered the largest burden 

13 of illness, hospitalization, and death from COVID– 

14 19. The Centers for Disease Control and Prevention 

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

16 likely as White people to be hospitalized for COVID– 

17 19, and that Black and Hispanic/Latino people are 

18 2.8 times as likely to die of COVID–19 as White 

19 people. 

20 (3) Historically, structures and systems such as 

21 racism, ableism, and class oppression have rendered 

22 affected Black and Brown communities more vulner23 able to inequities and have prevented people from 

24 achieving optimal health even when there is not a 

25 crisis of pandemic proportions, highlighting that racVerDate Sep 11 2014 01:00 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H1370.IH H1370

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1 ism and not race presents as a risk factor driving 

2 inequities in illness and death. 

3 (4) Significant differences in access to health 

4 care, specifically to primary health care providers, 

5 health care information, and greater perceived dis6 crimination in health care place Black, Brown, and 

7 AI/AN communities, individuals with disabilities, 

8 and Limited English Proficient individuals at great9 er risk of receiving delayed, and perhaps poorer, 

10 health care. 

11 (5) Stark racial inequities across the United 

12 States, including unequal access to stable housing, 

13 quality education, and decent employment, signifi14 cantly impact the ability of Black, Hispanic/Latinx, 

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

16 basic health needs. Black and Brown communities 

17 are more likely to experience homelessness and 

18 struggle with low-paying jobs or unemployment. An 

19 analysis by the University of New Hampshire found 

20 that in every month between March and August 

21 2020, Black and Latino workers had significantly 

22 higher unemployment rates than White workers, 

23 even after adjusting for age and education status. 

24 (6) Black, Hispanic/Latinx, and AI/AN commu25 nities experience higher rates of chronic disease and 


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1 disabilities, such as diabetes, hypertension, and asth2 ma, than non-Hispanic White communities, which 

3 predisposes them to greater risk of complications 

4 and mortality should they contract COVID–19. 

5 (7) Research experts recognize that there are 

6 underlying differences in illness and death when 

7 each of these factors is examined through socio8 economic and racial or ethnic lenses. These socially 

9 determinant factors of health accelerate disease and 

10 degradation. 

11 (8) Language barriers are highly correlated 

12 with medication noncompliance and inconsistent en13 gagement with health systems. Without language ac14 cessibility data and research around COVID–19, 

15 communities with limited English proficiency are 

16 less likely to receive critical testing and preventive 

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

18 Control and Prevention does not disseminate 

19 COVID–19 messaging in critical languages, includ20 ing Mandarin Chinese, Spanish, and Korean within 

21 the same timeframe as information in English de22 spite requirements to ensure limited English pro23 ficient populations are not discriminated against 

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

25 subsequent laws and Federal policies. 


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

2 further by ancestry to address disparities among 

3 Asian American, Native Hawaiian, and Pacific Is4 lander groups. According to the National Equity 

5 Atlas, while 13 percent of the Asian population over6 all lived in poverty in 2015, 39 percent of Burmese 

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

8 of Pacific Islanders lived in poverty. 

9 (10) Utilizing disaggregation of enrollment in 

10 Affordable Care Act-sponsored health insurance, the 

11 Asian and Pacific Islander American Health Forum 

12 found that prior to the passage of the Patient Pro13 tection and Affordable Care Act (Public Law 111– 

14 148), Korean Americans had a high uninsured rate 

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

16 Asian Americans. Developing targeted outreach ef17 forts assisted 1,000,000 people and resulted in a 56 

18 percent decrease in the uninsured among the Asian, 

19 Native Hawaiian, and Pacific Islander population. 

20 Such efforts show that disaggregated data is essen21 tial to public health mobilizations efforts. 

22 (11) Without clear understanding of how 

23 COVID–19 impacts marginalized racial and ethnic 

24 communities, there will be exacerbated risk of en25 dangering the most historically vulnerable of our 


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1 Nation. A recent national study found that Amer2 ican Indian/Alaska Natives were 3.5 times more like3 ly to be infected with COVID–19, however that data 

4 excluded 27 States as they had reported less than 70 

5 percent of race/ethnicity data to the Centers for Dis6 ease Control and Prevention making it impossible to 

7 include them in the analysis thus creating a signifi8 cant data gap for understanding the impact of 

9 COVID–19 on this vulnerable population. 

10 (12) The consequences of misunderstanding the 

11 racial and ethnic impact of COVID–19 expound be12 yond communities of color such that it would impact 

13 all. 

14 (13) Race and ethnicity are valuable research 

15 and practice variables when used and interpreted ap16 propriately. Health data collected on patients by 

17 race and ethnicity will boost and more efficiently di18 rect critical resources and inform risk communica19 tion development in languages and at appropriate 

20 health literacy levels, which resonate with historically 

21 vulnerable communities of color. 

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

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

24 vaccinations is incomplete and lacking. The incon25 sistency of data collection by Federal, State, and 


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1 local health authorities poses a threat to analysis 

2 and synthesis of the pandemic impact on Black, His3 panic/Latinx, and AI/AN communities. However, re4 search and medical experts of Historically Black 

5 Colleges and Universities and Tribal Colleges and 

6 Universities, academic health care institutions which 

7 are historically and geographically embedded in 

8 minoritized and marginalized communities, generally 

9 also possess rapport with the communities they 

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

11 leaders and health care service providers, to collect 

12 data and conduct research toward creating holistic 

13 solutions to remedy the inequitable impact of this 

14 and future public health crises. 

15 (15) Well-designed, ethically sound research 

16 aligns with the goals of medicine, addresses ques17 tions relevant to the population among whom the 

18 study will be carried out, balances the potential for 

19 benefit against the potential for harm, employs 

20 study designs that will yield scientifically valid and 

21 significant data, and generates useful knowledge. 

22 (16) The dearth of racially and ethnically 

23 disaggregated data reflecting the health of Black, 

24 Hispanic/Latinx, and AI/AN communities underlies 


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1 the challenges of a fully informed public health re2 sponse. 

3 (17) Without collecting race and ethnicity data 

4 associated with COVID–19 vaccinations, testing, 

5 hospitalizations, morbidities, and mortalities, as well 

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

7 AI/AN communities will remain at greater risk of 

8 disease and death. 

9 SEC. 3. EMERGENCY FUNDING FOR FEDERAL DATA COL10 LECTION ON THE RACIAL, ETHNIC, AND 

11 OTHER DEMOGRAPHIC DISPARITIES OF 

12 COVID–19. 

13 To conduct or support data collection on the racial, 

14 ethnic, and other demographic implications of COVID–19 

15 in the United States and its territories, including support 

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

17 health departments to collect and transmit racial, ethnic, 

18 and other demographic data to the relevant Department 

19 of Health and Human Services agencies, there is author20 ized to be appropriated— 

21 (1) to the Centers for Disease Control and Pre22 vention, $12,000,000; 

23 (2) to State and territorial public health agen24 cies, distributed proportionally based on the total 

25 population of their residents who are enrolled in 


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1 Medicaid or who have no health insurance, 

2 $15,000,000; 

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

4 and Tribal organizations (as defined in section 4 of 

5 the Indian Self-Determination and Education Assist6 ance Act), and urban Indian organizations (as de7 fined in section 4 of the Indian Health Care Im8 provement Act), $3,000,000; 

9 (4) to the Centers for Medicare & Medicaid 

10 Services, $5,000,000; 

11 (5) to the Food and Drug Administration, 

12 $5,000,000; 

13 (6) to the Agency for Healthcare Research and 

14 Quality, $5,000,000; and 

15 (7) to the Office of the National Coordinator 

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

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

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

19 and Human Services (referred to in this Act as the ‘‘Sec20 retary’’), acting through the Director of the Centers for 

21 Disease Control and Prevention and the Administrator of 

22 the Centers for Medicare & Medicaid Services, shall make 

23 publicly available on the website of the Centers for Disease 

24 Control and Prevention data collected across all surveil25 lance systems relating to COVID–19, disaggregated by 


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

2 status, disability status, and county, including the fol3 lowing: 

4 (1) Data related to all COVID–19 testing, in5 cluding the number of individuals tested and the 

6 number of tests that were positive. 

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

8 including hospitalizations and intensive care unit ad9 missions. 

10 (3) Data related to COVID–19 outcomes, in11 cluding total fatalities and case fatality rates (ex12 pressed as the proportion of individuals who were in13 fected with COVID–19 and died from the virus). 

14 (4) Data related to COVID–19 vaccinations, in15 cluding— 

16 (A) the number of vaccines administered; 

17 (B) the number of vaccinations offered, ac18 cepted, and refused; 

19 (C) the most common reasons for refusal; 

20 and 

21 (D) the percentage of vaccine doses allo22 cated and administered to each priority group. 

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 Human Services Office of Minority Health and be col2 lected, analyzed, and reported in accordance with the 

3 standards promulgated by the Assistant Secretary for 

4 Planning and Evaluation under title XXXI of the Public 

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

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

7 section shall be updated on a daily basis throughout the 

8 public health emergency. 

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

10 the Secretary shall take all necessary steps to protect the 

11 privacy of individuals whose information is included in 

12 such data, including— 

13 (1) complying with privacy protections provided 

14 under the regulations promulgated under section 

15 264(c) of the Health Insurance Portability and Ac16 countability Act of 1996; and 

17 (2) protections from all inappropriate internal 

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

19 data, including use of such data in determinations of 

20 eligibility (or continued eligibility) in health plans, 

21 and from inappropriate uses. 

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

23 Service shall consult with Indian Tribes and confer with 

24 urban Indian organizations on data collection and report25 ing for purposes of this Act. 


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1 (f) SUMMARY.—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, vaccination rates, and preferred lan17 guage of patients associated with COVID–19 by race 

18 and ethnicity; and 

19 (2) proposing evidenced-based response strate20 gies to safeguard the health of these communities in 

21 future pandemics. 

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

23 of any of the requirements of this section. 


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1 SEC. 5. COMMISSION ON ENSURING DATA FOR HEATH EQ2 UITY. 

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

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

5 a commission, to be known as the ‘‘Commission on Ensur6 ing Data for Heath Equity’’ (referred to in this section 

7 as the ‘‘Commission’’) to provide clear and robust guid8 ance on how to improve the collection, analysis, and use 

9 of demographic data in responding to future public health 

10 emergencies. 

11 (b) MEMBERSHIP AND CHAIRPERSON.— 

12 (1) MEMBERSHIP.—The Commission shall be 

13 composed of— 

14 (A) the Director of the Centers for Disease 

15 Control and Prevention; 

16 (B) the Director of the National Institutes 

17 of Health; 

18 (C) the Commissioner of Food and Drugs; 

19 (D) the Administrator of the Federal 

20 Emergency Management Agency; 

21 (E) the Director of the National Institute 

22 on Minority Health and Health Disparities; 

23 (F) the Director of the Indian Health 

24 Service; 

25 (G) the Administrator of the Centers for 

26 Medicare & Medicaid Services; 


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1 (H) the Director of the Agency for 

2 Healthcare Research and Quality; 

3 (I) the Surgeon General; 

4 (J) the Administrator of the Health Re5 sources and Services Administration; 

6 (K) the Director of the Office of Minority 

7 Health; 

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

9 Health; 

10 (M) the Chairperson of the National Coun11 cil on Disability; 

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

13 Tribal public health officials representing de14 partments of public health, or an urban Indian 

15 health representative, who shall represent juris16 dictions from different regions of the United 

17 States with relatively high concentrations of 

18 historically marginalized populations, to be ap19 pointed by the Secretary; and 

20 (O) at least 3 independent experts of ra21 cially and ethnically diverse representation with 

22 knowledge or field experience with racial and 

23 ethnic disparities in public health appointed by 

24 the Secretary. 


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1 (2) CHAIRPERSON.—The President of the Na2 tional Academies of Sciences, Engineering, and Med3 icine, or designee, shall serve as the chairperson of 

4 the Commission. 

5 (c) DUTIES.—The Commission shall— 

6 (1) examine barriers to collecting, analyzing, 

7 and using demographic data; 

8 (2) determine how to best use such data to pro9 mote health equity across the United States and re10 duce racial, Tribal, and other demographic dispari11 ties in health outcomes; 

12 (3) gather available data related to treatment of 

13 individuals with disabilities during the COVID–19 

14 pandemic and other public health emergencies, in15 cluding access to vaccinations, denial of treatment 

16 for pre-existing conditions, removal or denial of dis17 ability related equipment (including ventilators and 

18 CPAP machines), and data on completion of DNR 

19 orders, and identify barriers to obtaining accurate 

20 and timely data related to treatment of such individ21 uals; 

22 (4) solicit input from public health officials, 

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1 cials, and other experts on barriers to, and best 

2 practices for, collecting demographic data; and 

3 (5) recommend policy changes that the data in4 dicates are necessary to reduce disparities. 

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

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

7 written report of its findings and recommendations to 

8 Congress and post such report on the website of the De9 partment of Health and Human Services. Such reports 

10 shall contain information concerning— 

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

12 Tribal capacity to conduct public health research on 

13 COVID–19 and in future public health emergencies, 

14 with a focus on expanded capacity to analyze data 

15 on disparities correlated with race, ethnicity, income, 

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

17 and other relevant demographic characteristics, and 

18 an analysis of what demographic data is currently 

19 being collected, the accuracy of that data and any 

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

21 efforts to combat COVID–19, and what resources 

22 are needed to supplement existing public health data 

23 collection; 

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

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


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1 that maintains individual privacy while helping di2 rect the State, local, and Tribal response to public 

3 health emergencies; 

4 (3) how to improve demographic data collection 

5 related to COVID–19 and other public health emer6 gencies in the short- and long-term, including how to 

7 continue to grow and value the Tribal sovereignty of 

8 data and information concerning urban and rural 

9 Tribal communities; 

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

11 and other demographic disparities in COVID–19 

12 mortality, including an analysis of comorbidities and 

13 case fatality rates; 

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

15 gender, sexual orientation, and gender identity dis16 parities in COVID–19 treatment and mortality; 

17 (6) an analysis of COVID–19 treatment of indi18 viduals with disabilities, including equity of access to 

19 treatment and equipment and intersections of dis20 ability status with other demographic factors, includ21 ing race, and recommendations for how to improve 

22 transparency and equity of treatment for such indi23 viduals during the COVID–19 public health emer24 gency and future emergencies; 


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1 (7) how to support State, local, and Tribal ca2 pacity to eliminate barriers to vaccinations, testing, 

3 and treatment during the COVID–19 pandemic and 

4 future public health emergencies; and 

5 (8) to the extent possible, an analysis of Fed6 eral Government policies that disparately exacerbate 

7 the COVID–19 impact, and recommendations to im8 prove racial and other demographic disparities in 

9 health outcomes. 

10 (e) AUTHORIZATION OF APPROPRIATIONS.—There is 

11 authorized to be appropriated such sums as may be nec12 essary to carry out this section. 

Æ 


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