Equitable Data Collection and Disclosure on COVID-19 Act

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. WHITE- HOUSE, 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. 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’’. 5 SEC. 2. FINDINGS. 6 Congress makes the following findings: 7 VerDate Sep 11 2014 16:11 Jun 19, 2020 Jkt 099200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\S3850.IS S3850 pamtmann on DSKBC07HB2PROD with BILLS 2 •S 3850 IS (1) The World Health Organization (WHO) de- 1 clared COVID–19 a ‘‘Public Health Emergency of 2 International Concern’’ on January 30, 2020. By 3 late March 2020, there have been over 470,000 con- 4 firmed cases of, and 20,000 deaths associated with, 5 COVID–19 worldwide. 6 (2) In the United States, cases of COVID–19 7 have quickly surpassed those across the world, and 8 as of April 12, 2020, over 500,000 cases and 20,000 9 deaths have been reported in the United States 10 alone. 11 (3) Early reporting on racial inequities in 12 COVID–19 testing and treatment has renewed calls 13 for the Centers for Disease Control and Prevention 14 and other relevant subagencies within the Depart- 15 ment of Health and Human Services to publicly re- 16 lease racial and demographic information to better 17 inform the pandemic response, specifically in com- 18 munities of color and in Limited English Proficient 19 (LEP) communities. 20 (4) The burden of morbidity and mortality in 21 the United States has historically fallen dispropor- 22 tionately on marginalized communities (those who 23 suffer the most from great public health needs and 24 are the most medically underserved). 25 VerDate Sep 11 2014 16:11 Jun 19, 2020 Jkt 099200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\S3850.IS S3850 pamtmann on DSKBC07HB2PROD with BILLS 3 •S 3850 IS (5) Historically, structures and systems such as 1 racism, ableism and class oppression, have rendered 2 affected individuals more vulnerable to inequities 3 and have prevented people from achieving optimal 4 health even when there is not a crisis of pandemic 5 proportions. 6 (6) Significant differences in access to health 7 care, specifically to primary health care providers, 8 health care information, and greater perceived dis- 9 crimination in health care place communities of 10 color, individuals with disabilities, and LEP individ- 11 uals at greater risk of receiving delayed, and per- 12 haps poorer, health care. 13 (7) Stark racial inequities across the United 14 States, including unequal access to stable housing, 15 quality education, and decent employment, signifi- 16 cantly impact the ability of individuals to take care 17 of their most basic health needs. Communities of 18 color are more likely to experience homelessness and 19 struggle with low-paying jobs or unemployment. To 20 date, experts have cited that 2 in 5 Latino residents 21 in New York City, the current epicenter of the 22 COVID–19 pandemic, are recently unemployed as a 23 direct consequence of COVID–19. And at a time 24 when sheltering in place will save lives, less than 1 25 VerDate Sep 11 2014 16:11 Jun 19, 2020 Jkt 099200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\S3850.IS S3850 pamtmann on DSKBC07HB2PROD with BILLS 4 •S 3850 IS in 5 Black workers and roughly 1 in 6 Latino work- 1 ers are able to work from home. 2 (8) Communities of color experience higher 3 rates of chronic disease and disabilities, such as dia- 4 betes, hypertension, and asthma, than non-Hispanic 5 White communities, which predisposes them to 6 greater risk of complications and mortality should 7 they contract COVID–19. 8 (9) Such communities are made even more vul- 9 nerable to the uncertainty of the preparation, re- 10 sponse, and events surrounding the pandemic public 11 health crisis, COVID–19. For instance, in the recent 12 past, multiple epidemiologic studies and reviews have 13 reported higher rates of hospitalization due to the 14 2009 H1N1 pandemic among the poor, individuals 15 with disabilities and preexisting conditions, those liv- 16 ing in impoverished neighborhoods, and individuals 17 of color and marginalized ethnic backgrounds in the 18 United States. These findings highlight the urgency 19 to adapt the COVID–19 response to monitor and act 20 on these inequities via data collection and research 21 by race and ethnicity. 22 (10) Research experts recognize that there are 23 underlying differences in illness and death when 24 each of these factors is examined through socio- 25 VerDate Sep 11 2014 16:11 Jun 19, 2020 Jkt 099200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\S3850.IS S3850 pamtmann on DSKBC07HB2PROD with BILLS 5 •S 3850 IS economic and racial or ethnic lenses. These socially 1 determinant factors of health accelerate disease and 2 degradation. 3 (11) Language barriers are highly correlated 4 with medication noncompliance and inconsistent en- 5 gagement with health systems. Without language ac- 6 cessibility data and research around COVID–19, 7 these communities are less likely to receive critical 8 testing and preventive health services. Yet, to date, 9 the Centers for Disease Control and Prevention does 10 not disseminate COVID–19 messaging in critical 11 languages, including Mandarin Chinese, Spanish, 12 and Korean within the same timeframe as informa- 13 tion in English despite requirements to ensure lim- 14 ited English proficient populations are not discrimi- 15 nated against under title VI of the Civil Rights Act 16 of 1964 and subsequent laws and Federal policies. 17 (12) Further, it is critical to disaggregate data 18 further by ancestry to address disparities among 19 Asian American, Native Hawaiian, and Pacific Is- 20 lander groups. According to the National Equity 21 Atlas, while 13 percent of the Asian population over- 22 all lived in poverty in 2015, 39 percent of Burmese 23 people, 29 percent of Hmong people, and 21 percent 24 of Pacific Islanders lived in poverty. 25 VerDate Sep 11 2014 16:11 Jun 19, 2020 Jkt 099200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\S3850.IS S3850 pamtmann on DSKBC07HB2PROD with BILLS 6 •S 3850 IS (13) Utilizing disaggregation of enrollment in 1 Affordable Care Act-sponsored health insurance, the 2 Asian and Pacific Islander American Health Forum 3 found that prior to the passage of the Patient Pro- 4 tection and Affordable Care Act (Public Law 111– 5 148), Korean Americans had a high uninsured rate 6 of 23 percent, compared to just 12 percent for all 7 Asian Americans. Developing targeted outreach ef- 8 forts assisted 1,000,000 people and resulted in a 56- 9 percent decrease in the uninsured among the Asian, 10 Native Hawaiian, and Pacific Islander population. 11 Such efforts show that disaggregated data is essen- 12 tial to public health mobilizations efforts. 13 (14) Without clear understanding of how 14 COVID–19 impacts marginalized racial and ethnic 15 communities, there will be exacerbated risk of en- 16 dangering the most historically vulnerable of our 17 Nation. 18 (15) The consequences of misunderstanding the 19 racial and ethnic impact of COVID–19 expound be- 20 yond communities of color such that it would impact 21 all. 22 (16) Race and ethnicity are valuable research 23 and practice variables when used and interpreted ap- 24 propriately. Health data collected on patients by 25 VerDate Sep 11 2014 16:11 Jun 19, 2020 Jkt 099200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\S3850.IS S3850 pamtmann on DSKBC07HB2PROD with BILLS 7 •S 3850 IS race and ethnicity will boost and more efficiently di- 1 rect critical resources and inform risk communica- 2 tion development in languages and at appropriate 3 health literacy levels, which resonate with historically 4 vulnerable communities of color. 5 (17) To date, there is no public standardized 6 and comprehensive race and ethnicity data reposi- 7 tory of COVID–19 testing, hospitalizations, or mor- 8 tality. The inconsistency of data collection by Fed- 9 eral, State, and local health authorities, and the in- 10 ability to access data by public research institutions 11 and academic organizations, poses a threat to anal- 12 ysis and synthesis of the pandemic impact on com- 13 munities of color. However, research and medical ex- 14 perts of Historically Black Colleges and Universities, 15 academic health care institutions which are histori- 16 cally and geographically embedded in minoritized 17 and marginalized communities, generally also pos- 18 sess rapport with the communities they serve. They 19 are well-positioned, as trusted thought leaders and 20 health care service providers, to collect data and con- 21 duct research toward creating holistic solutions to 22 remedy the inequitable impact of this and future 23 public health crises. 24 VerDate Sep 11 2014 16:11 Jun 19, 2020 Jkt 099200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\S3850.IS S3850 pamtmann on DSKBC07HB2PROD with BILLS 8 •S 3850 IS (18) Well-designed, ethically sound research 1 aligns with the goals of medicine, addresses ques- 2 tions relevant to the population among whom the 3 study will be carried out, balances the potential for 4 benefit against the potential for harm, employs 5 study designs that will yield scientifically valid and 6 significant data, and generates useful knowledge. 7 (19) The dearth of racially and ethnically 8 disaggregated data reflecting the health of commu- 9 nities of color underlies the challenges of a fully in- 10 formed public health response. 11 (20) Without collecting race and ethnicity data 12 associated with COVID–19 testing, hospitalizations, 13 morbidities, and mortalities, as well as publicly dis- 14 closing it, communities of color will remain at great- 15 er risk of disease and death. 16 SEC. 3. EMERGENCY FUNDING FOR FEDERAL DATA COL- 17 LECTION ON THE RACIAL, ETHNIC, AND 18 OTHER DEMOGRAPHIC DISPARITIES OF 19 COVID–19. 20 To conduct or support data collection on the racial, 21 ethnic, and other demographic implications of COVID–19 22 in the United States and its territories, including support 23 to assist in the capacity building for State and local public 24 health departments to collect and transmit racial, ethnic, 25 VerDate Sep 11 2014 16:11 Jun 19, 2020 Jkt 099200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\S3850.IS S3850 pamtmann on DSKBC07HB2PROD with BILLS 9 •S 3850 IS and other demographic data to the relevant Department 1 of Health and Human Services agencies, there is author- 2 ized to be appropriated— 3 (1) to the Centers for Disease Control and Pre- 4 vention, $12,000,000; 5 (2) to State and territorial public health agen- 6 cies, distributed proportionally based on the total 7 population of their residents who are enrolled in 8 Medicaid or who have no health insurance, 9 $15,000,000; 10 (3) to the Indian Health Service, Indian Tribes 11 and Tribal organizations (as defined in section 4 of 12 the Indian Self-Determination and Education Assist- 13 ance Act), and urban Indian organizations (as de- 14 fined in section 4 of the Indian Health Care Im- 15 provement Act), $3,000,000; 16 (4) to the Centers for Medicare & Medicaid 17 Services, $5,000,000; 18 (5) to the Food and Drug Administration, 19 $5,000,000; 20 (6) to the Agency for Healthcare Research and 21 Quality, $5,000,000; and 22 (7) to the Office of the National Coordinator 23 for Health Information Technology, $5,000,000. 24 VerDate Sep 11 2014 16:11 Jun 19, 2020 Jkt 099200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\S3850.IS S3850 pamtmann on DSKBC07HB2PROD with BILLS 10 •S 3850 IS SEC. 4. COVID–19 DATA COLLECTION AND DISCLOSURE. 1 (a) DATA COLLECTION.—The Secretary of Health 2 and Human Services (referred to in this Act as the ‘‘Sec- 3 retary’’), acting through the Director of the Centers for 4 Disease Control and Prevention and the Administrator of 5 the Centers for Medicare & Medicaid Services, shall make 6 publicly available on the website of the Centers for Disease 7 Control and Prevention data collected across all surveil- 8 lance systems relating to COVID–19, disaggregated by 9 race, ethnicity, sex, age, primary language, socioeconomic 10 status, disability status, and county, including the fol- 11 lowing: 12 (1) Data related to all COVID–19 testing, in- 13 cluding the number of individuals tested and the 14 number of tests that were positive. 15 (2) Data related to treatment for COVID–19, 16 including hospitalizations and intensive care unit ad- 17 missions. 18 (3) Data related to COVID–19 outcomes, in- 19 cluding total fatalities and case fatality rates (ex- 20 pressed as the proportion of individuals who were in- 21 fected with COVID–19 and died from the virus). 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 Human Services Office of Minority Health and be col- 26 VerDate Sep 11 2014 16:11 Jun 19, 2020 Jkt 099200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\S3850.IS S3850 pamtmann on DSKBC07HB2PROD with BILLS 11 •S 3850 IS lected, analyzed, and reported in accordance with the 1 standards promulgated by the Assistant Secretary for 2 Planning and Evaluation under title XXXI of the Public 3 Health Service Act (42 U.S.C. 300kk et seq.). 4 (c) TIMELINE.—The data made available under this 5 section shall be updated on a daily basis throughout the 6 public health emergency. 7 (d) PRIVACY.—In publishing data under this section, 8 the Secretary shall take all necessary steps to protect the 9 privacy of individuals whose information is included in 10 such data, including— 11 (1) complying with privacy protections provided 12 under the regulations promulgated under section 13 264(c) of the Health Insurance Portability and Ac- 14 countability Act of 1996; and 15 (2) protections from all inappropriate internal 16 use by an entity that collects, stores, or receives the 17 data, including use of such data in determinations of 18 eligibility (or continued eligibility) in health plans, 19 and from inappropriate uses. 20 (e) INDIAN HEALTH SERVICE.— [Text truncated for display. Full text available on Congress.gov.]