Equitable Data Collection and Disclosure on COVID–19 Act of 2021

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-COR- TEZ, 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 Com- mittee 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. Be it enacted by the Senate and House of Representa- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘Equitable Data Collec- 4 tion and Disclosure on COVID–19 Act of 2021’’. 5 VerDate Sep 11 2014 01:00 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H1370.IH H1370 pbinns on DSKJLVW7X2PROD with BILLS 2 •HR 1370 IH SEC. 2. FINDINGS. 1 Congress makes the following findings: 2 (1) The World Health Organization (WHO) de- 3 clared COVID–19 a ‘‘Public Health Emergency of 4 International Concern’’ on January 30, 2020. By 5 late January 2021, there have been over 22,000,000 6 confirmed cases of, and 383,351 deaths associated 7 with, COVID–19 in the United States. 8 (2) From the beginning of this pandemic, 9 Black, Brown, and American Indian/Alaska Native 10 (in this section referred to as ‘‘AI/AN’’) people in 11 the United States have suffered the largest burden 12 of illness, hospitalization, and death from COVID– 13 19. The Centers for Disease Control and Prevention 14 (CDC) reports that AI/AN people are 4 times as 15 likely as White people to be hospitalized for COVID– 16 19, and that Black and Hispanic/Latino people are 17 2.8 times as likely to die of COVID–19 as White 18 people. 19 (3) Historically, structures and systems such as 20 racism, ableism, and class oppression have rendered 21 affected Black and Brown communities more vulner- 22 able to inequities and have prevented people from 23 achieving optimal health even when there is not a 24 crisis of pandemic proportions, highlighting that rac- 25 VerDate Sep 11 2014 01:00 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H1370.IH H1370 pbinns on DSKJLVW7X2PROD with BILLS 3 •HR 1370 IH ism and not race presents as a risk factor driving 1 inequities in illness and death. 2 (4) Significant differences in access to health 3 care, specifically to primary health care providers, 4 health care information, and greater perceived dis- 5 crimination in health care place Black, Brown, and 6 AI/AN communities, individuals with disabilities, 7 and Limited English Proficient individuals at great- 8 er risk of receiving delayed, and perhaps poorer, 9 health care. 10 (5) Stark racial inequities across the United 11 States, including unequal access to stable housing, 12 quality education, and decent employment, signifi- 13 cantly impact the ability of Black, Hispanic/Latinx, 14 and AI/AN individuals to take care of their most 15 basic health needs. Black and Brown communities 16 are more likely to experience homelessness and 17 struggle with low-paying jobs or unemployment. An 18 analysis by the University of New Hampshire found 19 that in every month between March and August 20 2020, Black and Latino workers had significantly 21 higher unemployment rates than White workers, 22 even after adjusting for age and education status. 23 (6) Black, Hispanic/Latinx, and AI/AN commu- 24 nities experience higher rates of chronic disease and 25 VerDate Sep 11 2014 01:00 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H1370.IH H1370 pbinns on DSKJLVW7X2PROD with BILLS 4 •HR 1370 IH disabilities, such as diabetes, hypertension, and asth- 1 ma, than non-Hispanic White communities, which 2 predisposes them to greater risk of complications 3 and mortality should they contract COVID–19. 4 (7) Research experts recognize that there are 5 underlying differences in illness and death when 6 each of these factors is examined through socio- 7 economic and racial or ethnic lenses. These socially 8 determinant factors of health accelerate disease and 9 degradation. 10 (8) Language barriers are highly correlated 11 with medication noncompliance and inconsistent en- 12 gagement with health systems. Without language ac- 13 cessibility data and research around COVID–19, 14 communities with limited English proficiency are 15 less likely to receive critical testing and preventive 16 health services. Yet, to date, the Centers for Disease 17 Control and Prevention does not disseminate 18 COVID–19 messaging in critical languages, includ- 19 ing Mandarin Chinese, Spanish, and Korean within 20 the same timeframe as information in English de- 21 spite requirements to ensure limited English pro- 22 ficient populations are not discriminated against 23 under title VI of the Civil Rights Act of 1964 and 24 subsequent laws and Federal policies. 25 VerDate Sep 11 2014 01:00 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H1370.IH H1370 pbinns on DSKJLVW7X2PROD with BILLS 5 •HR 1370 IH (9) Further, it is critical to disaggregate data 1 further by ancestry to address disparities among 2 Asian American, Native Hawaiian, and Pacific Is- 3 lander groups. According to the National Equity 4 Atlas, while 13 percent of the Asian population over- 5 all lived in poverty in 2015, 39 percent of Burmese 6 people, 29 percent of Hmong people, and 21 percent 7 of Pacific Islanders lived in poverty. 8 (10) Utilizing disaggregation of enrollment in 9 Affordable Care Act-sponsored health insurance, the 10 Asian and Pacific Islander American Health Forum 11 found that prior to the passage of the Patient Pro- 12 tection and Affordable Care Act (Public Law 111– 13 148), Korean Americans had a high uninsured rate 14 of 23 percent, compared to just 12 percent for all 15 Asian Americans. Developing targeted outreach ef- 16 forts assisted 1,000,000 people and resulted in a 56 17 percent decrease in the uninsured among the Asian, 18 Native Hawaiian, and Pacific Islander population. 19 Such efforts show that disaggregated data is essen- 20 tial to public health mobilizations efforts. 21 (11) Without clear understanding of how 22 COVID–19 impacts marginalized racial and ethnic 23 communities, there will be exacerbated risk of en- 24 dangering the most historically vulnerable of our 25 VerDate Sep 11 2014 01:00 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H1370.IH H1370 pbinns on DSKJLVW7X2PROD with BILLS 6 •HR 1370 IH Nation. A recent national study found that Amer- 1 ican Indian/Alaska Natives were 3.5 times more like- 2 ly to be infected with COVID–19, however that data 3 excluded 27 States as they had reported less than 70 4 percent of race/ethnicity data to the Centers for Dis- 5 ease Control and Prevention making it impossible to 6 include them in the analysis thus creating a signifi- 7 cant data gap for understanding the impact of 8 COVID–19 on this vulnerable population. 9 (12) The consequences of misunderstanding the 10 racial and ethnic impact of COVID–19 expound be- 11 yond communities of color such that it would impact 12 all. 13 (13) Race and ethnicity are valuable research 14 and practice variables when used and interpreted ap- 15 propriately. Health data collected on patients by 16 race and ethnicity will boost and more efficiently di- 17 rect critical resources and inform risk communica- 18 tion development in languages and at appropriate 19 health literacy levels, which resonate with historically 20 vulnerable communities of color. 21 (14) To date, race and ethnicity data on 22 COVID–19 cases, test, hospitalizations, deaths, and 23 vaccinations is incomplete and lacking. The incon- 24 sistency of data collection by Federal, State, and 25 VerDate Sep 11 2014 01:00 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H1370.IH H1370 pbinns on DSKJLVW7X2PROD with BILLS 7 •HR 1370 IH local health authorities poses a threat to analysis 1 and synthesis of the pandemic impact on Black, His- 2 panic/Latinx, and AI/AN communities. However, re- 3 search and medical experts of Historically Black 4 Colleges and Universities and Tribal Colleges and 5 Universities, academic health care institutions which 6 are historically and geographically embedded in 7 minoritized and marginalized communities, generally 8 also possess rapport with the communities they 9 serve. They are well-positioned, as trusted thought 10 leaders and health care service providers, to collect 11 data and conduct research toward creating holistic 12 solutions to remedy the inequitable impact of this 13 and future public health crises. 14 (15) Well-designed, ethically sound research 15 aligns with the goals of medicine, addresses ques- 16 tions relevant to the population among whom the 17 study will be carried out, balances the potential for 18 benefit against the potential for harm, employs 19 study designs that will yield scientifically valid and 20 significant data, and generates useful knowledge. 21 (16) The dearth of racially and ethnically 22 disaggregated data reflecting the health of Black, 23 Hispanic/Latinx, and AI/AN communities underlies 24 VerDate Sep 11 2014 01:00 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H1370.IH H1370 pbinns on DSKJLVW7X2PROD with BILLS 8 •HR 1370 IH the challenges of a fully informed public health re- 1 sponse. 2 (17) Without collecting race and ethnicity data 3 associated with COVID–19 vaccinations, testing, 4 hospitalizations, morbidities, and mortalities, as well 5 as publicly disclosing it, Black, Hispanic/Latinx, and 6 AI/AN communities will remain at greater risk of 7 disease and death. 8 SEC. 3. EMERGENCY FUNDING FOR FEDERAL DATA COL- 9 LECTION ON THE RACIAL, ETHNIC, AND 10 OTHER DEMOGRAPHIC DISPARITIES OF 11 COVID–19. 12 To conduct or support data collection on the racial, 13 ethnic, and other demographic implications of COVID–19 14 in the United States and its territories, including support 15 to assist in the capacity building for State and local public 16 health departments to collect and transmit racial, ethnic, 17 and other demographic data to the relevant Department 18 of Health and Human Services agencies, there is author- 19 ized to be appropriated— 20 (1) to the Centers for Disease Control and Pre- 21 vention, $12,000,000; 22 (2) to State and territorial public health agen- 23 cies, distributed proportionally based on the total 24 population of their residents who are enrolled in 25 VerDate Sep 11 2014 01:00 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H1370.IH H1370 pbinns on DSKJLVW7X2PROD with BILLS 9 •HR 1370 IH Medicaid or who have no health insurance, 1 $15,000,000; 2 (3) to the Indian Health Service, Indian Tribes 3 and Tribal organizations (as defined in section 4 of 4 the Indian Self-Determination and Education Assist- 5 ance Act), and urban Indian organizations (as de- 6 fined in section 4 of the Indian Health Care Im- 7 provement Act), $3,000,000; 8 (4) to the Centers for Medicare & Medicaid 9 Services, $5,000,000; 10 (5) to the Food and Drug Administration, 11 $5,000,000; 12 (6) to the Agency for Healthcare Research and 13 Quality, $5,000,000; and 14 (7) to the Office of the National Coordinator 15 for Health Information Technology, $5,000,000. 16 SEC. 4. COVID–19 DATA COLLECTION AND DISCLOSURE. 17 (a) DATA COLLECTION.—The Secretary of Health 18 and Human Services (referred to in this Act as the ‘‘Sec- 19 retary’’), acting through the Director of the Centers for 20 Disease Control and Prevention and the Administrator of 21 the Centers for Medicare & Medicaid Services, shall make 22 publicly available on the website of the Centers for Disease 23 Control and Prevention data collected across all surveil- 24 lance systems relating to COVID–19, disaggregated by 25 VerDate Sep 11 2014 01:00 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H1370.IH H1370 pbinns on DSKJLVW7X2PROD with BILLS 10 •HR 1370 IH race, ethnicity, sex, age, primary language, socioeconomic 1 status, disability status, and county, including the fol- 2 lowing: 3 (1) Data related to all COVID–19 testing, in- 4 cluding the number of individuals tested and the 5 number of tests that were positive. 6 (2) Data related to treatment for COVID–19, 7 including hospitalizations and intensive care unit ad- 8 missions. 9 (3) Data related to COVID–19 outcomes, in- 10 cluding total fatalities and case fatality rates (ex- 11 pressed as the proportion of individuals who were in- 12 fected with COVID–19 and died from the virus). 13 (4) Data related to COVID–19 vaccinations, in- 14 cluding— 15 (A) the number of vaccines administered; 16 (B) the number of vaccinations offered, ac- 17 cepted, and refused; 18 (C) the most common reasons for refusal; 19 and 20 (D) the percentage of vaccine doses allo- 21 cated and administered to each priority group. 22 (b) APPLICATION OF STANDARDS.—To the extent 23 practicable, data collection under this section shall follow 24 standards developed by the Department of Health and 25 VerDate Sep 11 2014 01:00 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H1370.IH H1370 pbinns on DSKJLVW7X2PROD with BILLS 11 •HR 1370 IH Human Services Office of Minority Health and be col- 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 Ac- 15 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 determination [Text truncated for display. 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