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

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 fol- lowing 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. 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 SEC. 2. FINDINGS. 6 Congress makes the following findings: 7 (1) The World Health Organization (WHO) de- 8 clared COVID–19 a ‘‘Public Health Emergency of 9 VerDate Sep 11 2014 06:08 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\S512.IS S512 pbinns on DSKJLVW7X2PROD with BILLS 2 •S 512 IS International Concern’’ on January 30, 2020. By 1 late January 2021, there have been over 22,000,000 2 confirmed cases of, and 383,351 deaths associated 3 with, COVID–19 in the United States. 4 (2) From the beginning of this pandemic, 5 Black, Brown, and American Indian/Alaska Native 6 (in this section referred to as ‘‘AI/AN’’) people in 7 the United States have suffered the largest burden 8 of illness, hospitalization, and death from COVID– 9 19. The Centers for Disease Control and Prevention 10 (CDC) reports that AI/AN people are 4 times as 11 likely as White people to be hospitalized for COVID– 12 19, and that Black and Hispanic/Latino people are 13 2.8 times as likely to die of COVID–19 as White 14 people. 15 (3) Historically, structures and systems such as 16 racism, ableism, and class oppression have rendered 17 affected Black and Brown communities more vulner- 18 able to inequities and have prevented people from 19 achieving optimal health even when there is not a 20 crisis of pandemic proportions, highlighting that rac- 21 ism and not race presents as a risk factor driving 22 inequities in illness and death. 23 (4) Significant differences in access to health 24 care, specifically to primary health care providers, 25 VerDate Sep 11 2014 06:08 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\S512.IS S512 pbinns on DSKJLVW7X2PROD with BILLS 3 •S 512 IS health care information, and greater perceived dis- 1 crimination in health care place Black, Brown, and 2 AI/AN communities, individuals with disabilities, 3 and Limited English Proficient individuals at great- 4 er risk of receiving delayed, and perhaps poorer, 5 health care. 6 (5) Stark racial inequities across the United 7 States, including unequal access to stable housing, 8 quality education, and decent employment, signifi- 9 cantly impact the ability of Black, Hispanic/Latinx, 10 and AI/AN individuals to take care of their most 11 basic health needs. Black and Brown communities 12 are more likely to experience homelessness and 13 struggle with low-paying jobs or unemployment. An 14 analysis by the University of New Hampshire found 15 that in every month between March and August 16 2020, Black and Latino workers had significantly 17 higher unemployment rates than White workers, 18 even after adjusting for age and education status. 19 (6) Black, Hispanic/Latinx, and AI/AN commu- 20 nities experience higher rates of chronic disease and 21 disabilities, such as diabetes, hypertension, and asth- 22 ma, than non-Hispanic White communities, which 23 predisposes them to greater risk of complications 24 and mortality should they contract COVID–19. 25 VerDate Sep 11 2014 06:08 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\S512.IS S512 pbinns on DSKJLVW7X2PROD with BILLS 4 •S 512 IS (7) Research experts recognize that there are 1 underlying differences in illness and death when 2 each of these factors is examined through socio- 3 economic and racial or ethnic lenses. These socially 4 determinant factors of health accelerate disease and 5 degradation. 6 (8) Language barriers are highly correlated 7 with medication noncompliance and inconsistent en- 8 gagement with health systems. Without language ac- 9 cessibility data and research around COVID–19, 10 communities with limited English proficiency are 11 less likely to receive critical testing and preventive 12 health services. Yet, to date, the Centers for Disease 13 Control and Prevention does not disseminate 14 COVID–19 messaging in critical languages, includ- 15 ing Mandarin Chinese, Spanish, and Korean within 16 the same timeframe as information in English de- 17 spite requirements to ensure limited English pro- 18 ficient populations are not discriminated against 19 under title VI of the Civil Rights Act of 1964 and 20 subsequent laws and Federal policies. 21 (9) Further, it is critical to disaggregate data 22 further by ancestry to address disparities among 23 Asian American, Native Hawaiian, and Pacific Is- 24 lander groups. According to the National Equity 25 VerDate Sep 11 2014 06:08 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\S512.IS S512 pbinns on DSKJLVW7X2PROD with BILLS 5 •S 512 IS Atlas, while 13 percent of the Asian population over- 1 all lived in poverty in 2015, 39 percent of Burmese 2 people, 29 percent of Hmong people, and 21 percent 3 of Pacific Islanders lived in poverty. 4 (10) Utilizing disaggregation of enrollment in 5 Affordable Care Act-sponsored health insurance, the 6 Asian and Pacific Islander American Health Forum 7 found that prior to the passage of the Patient Pro- 8 tection and Affordable Care Act (Public Law 111– 9 148), Korean Americans had a high uninsured rate 10 of 23 percent, compared to just 12 percent for all 11 Asian Americans. Developing targeted outreach ef- 12 forts assisted 1,000,000 people and resulted in a 56 13 percent decrease in the uninsured among the Asian, 14 Native Hawaiian, and Pacific Islander population. 15 Such efforts show that disaggregated data is essen- 16 tial to public health mobilizations efforts. 17 (11) Without clear understanding of how 18 COVID–19 impacts marginalized racial and ethnic 19 communities, there will be exacerbated risk of en- 20 dangering the most historically vulnerable of our 21 Nation. A recent national study found that Amer- 22 ican Indian/Alaska Natives were 3.5 times more like- 23 ly to be infected with COVID–19, however that data 24 excluded 27 States as they had reported less than 70 25 VerDate Sep 11 2014 06:08 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\S512.IS S512 pbinns on DSKJLVW7X2PROD with BILLS 6 •S 512 IS percent of race/ethnicity data to the Centers for Dis- 1 ease Control and Prevention making it impossible to 2 include them in the analysis thus creating a signifi- 3 cant data gap for understanding the impact of 4 COVID–19 on this vulnerable population. 5 (12) The consequences of misunderstanding the 6 racial and ethnic impact of COVID–19 expound be- 7 yond communities of color such that it would impact 8 all. 9 (13) Race and ethnicity are valuable research 10 and practice variables when used and interpreted ap- 11 propriately. Health data collected on patients by 12 race and ethnicity will boost and more efficiently di- 13 rect critical resources and inform risk communica- 14 tion development in languages and at appropriate 15 health literacy levels, which resonate with historically 16 vulnerable communities of color. 17 (14) To date, race and ethnicity data on 18 COVID–19 cases, test, hospitalizations, deaths, and 19 vaccinations is incomplete and lacking. The incon- 20 sistency of data collection by Federal, State, and 21 local health authorities poses a threat to analysis 22 and synthesis of the pandemic impact on Black, His- 23 panic/Latinx, and AI/AN communities. However, re- 24 search and medical experts of Historically Black 25 VerDate Sep 11 2014 06:08 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\S512.IS S512 pbinns on DSKJLVW7X2PROD with BILLS 7 •S 512 IS Colleges and Universities and Tribal Colleges and 1 Universities, academic health care institutions which 2 are historically and geographically embedded in 3 minoritized and marginalized communities, generally 4 also possess rapport with the communities they 5 serve. They are well-positioned, as trusted thought 6 leaders and health care service providers, to collect 7 data and conduct research toward creating holistic 8 solutions to remedy the inequitable impact of this 9 and future public health crises. 10 (15) Well-designed, ethically sound research 11 aligns with the goals of medicine, addresses ques- 12 tions relevant to the population among whom the 13 study will be carried out, balances the potential for 14 benefit against the potential for harm, employs 15 study designs that will yield scientifically valid and 16 significant data, and generates useful knowledge. 17 (16) The dearth of racially and ethnically 18 disaggregated data reflecting the health of Black, 19 Hispanic/Latinx, and AI/AN communities underlies 20 the challenges of a fully informed public health re- 21 sponse. 22 (17) Without collecting race and ethnicity data 23 associated with COVID–19 vaccinations, testing, 24 hospitalizations, morbidities, and mortalities, as well 25 VerDate Sep 11 2014 06:08 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\S512.IS S512 pbinns on DSKJLVW7X2PROD with BILLS 8 •S 512 IS as publicly disclosing it, Black, Hispanic/Latinx, and 1 AI/AN communities will remain at greater risk of 2 disease and death. 3 SEC. 3. EMERGENCY FUNDING FOR FEDERAL DATA COL- 4 LECTION ON THE RACIAL, ETHNIC, AND 5 OTHER DEMOGRAPHIC DISPARITIES OF 6 COVID–19. 7 To conduct or support data collection on the racial, 8 ethnic, and other demographic implications of COVID–19 9 in the United States and its territories, including support 10 to assist in the capacity building for State and local public 11 health departments to collect and transmit racial, ethnic, 12 and other demographic data to the relevant Department 13 of Health and Human Services agencies, there is author- 14 ized to be appropriated— 15 (1) to the Centers for Disease Control and Pre- 16 vention, $12,000,000; 17 (2) to State and territorial public health agen- 18 cies, distributed proportionally based on the total 19 population of their residents who are enrolled in 20 Medicaid or who have no health insurance, 21 $15,000,000; 22 (3) to the Indian Health Service, Indian Tribes 23 and Tribal organizations (as defined in section 4 of 24 the Indian Self-Determination and Education Assist- 25 VerDate 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 ance Act), and urban Indian organizations (as de- 1 fined in section 4 of the Indian Health Care Im- 2 provement Act), $3,000,000; 3 (4) to the Centers for Medicare & Medicaid 4 Services, $5,000,000; 5 (5) to the Food and Drug Administration, 6 $5,000,000; 7 (6) to the Agency for Healthcare Research and 8 Quality, $5,000,000; and 9 (7) to the Office of the National Coordinator 10 for Health Information Technology, $5,000,000. 11 SEC. 4. COVID–19 DATA COLLECTION AND DISCLOSURE. 12 (a) DATA COLLECTION.—The Secretary of Health 13 and Human Services (referred to in this Act as the ‘‘Sec- 14 retary’’), acting through the Director of the Centers for 15 Disease Control and Prevention and the Administrator of 16 the Centers for Medicare & Medicaid Services, shall make 17 publicly available on the website of the Centers for Disease 18 Control and Prevention data collected across all surveil- 19 lance systems relating to COVID–19, disaggregated by 20 race, ethnicity, sex, age, primary language, socioeconomic 21 status, disability status, and county, including the fol- 22 lowing: 23 VerDate Sep 11 2014 06:08 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\S512.IS S512 pbinns on DSKJLVW7X2PROD with BILLS 10 •S 512 IS (1) Data related to all COVID–19 testing, in- 1 cluding the number of individuals tested and the 2 number of tests that were positive. 3 (2) Data related to treatment for COVID–19, 4 including hospitalizations and intensive care unit ad- 5 missions. 6 (3) Data related to COVID–19 outcomes, in- 7 cluding total fatalities and case fatality rates (ex- 8 pressed as the proportion of individuals who were in- 9 fected with COVID–19 and died from the virus). 10 (4) Data related to COVID–19 vaccinations, in- 11 cluding— 12 (A) the number of vaccines administered; 13 (B) the number of vaccinations offered, ac- 14 cepted, and refused; 15 (C) the most common reasons for refusal; 16 and 17 (D) the percentage of vaccine doses allo- 18 cated and administered to each priority group. 19 (b) APPLICATION OF STANDARDS.—To the extent 20 practicable, data collection under this section shall follow 21 standards developed by the Department of Health and 22 Human Services Office of Minority Health and be col- 23 lected, analyzed, and reported in accordance with the 24 standards promulgated by the Assistant Secretary for 25 VerDate Sep 11 2014 06:08 Mar 31, 2021 Jkt 019200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\S512.IS S512 pbinns on DSKJLVW7X2PROD with BILLS 11 •S 512 IS Planning and Evaluation under title XXXI of the Public 1 Health Service Act (42 U.S.C. 300kk et seq.). 2 (c) TIMELINE.—The data made available under this 3 section shall be updated on a daily basis throughout the 4 public health emergency. 5 (d) PRIVACY.—In publishing data under this section, 6 the Secretary shall take all necessary steps to protect the 7 privacy of individuals whose information is included in 8 such data, including— 9 (1) complying with privacy protections provided 10 under the regulations promulgated under section 11 264(c) of the Health Insurance Portability and Ac- 12 countability Act of 1996; and 13 (2) protections from all inappropriate internal 14 use by an entity that collects, stores, or receives the 15 data, including use of such data in determinations of 16 eligibility (or continued eligibility) in health plans, 17 and from inappropriate uses. 18 (e) INDIAN HEALTH SERVICE.—The Indian Health 19 Service shall consult with Indian Tribes and confer with 20 urban Indian organizations on data collection and report- 21 ing for purposes of this Act. 22 (f) SUMMARY.—Not later than 60 days after the date 23 on which the Secretary certifies that th [Text truncated for display. Full text available on Congress.gov.]