Equitable Data Collection and Disclosure on COVID–19 Act

I 116TH CONGRESS 2D SESSION H. R. 6585 To require the Centers for Disease Control and Prevention to collect and report certain data concerning COVID–19. IN THE HOUSE OF REPRESENTATIVES APRIL 21, 2020 Ms. KELLY of Illinois (for herself, Ms. PRESSLEY, Ms. BASS, Ms. LEE of Cali- fornia, Ms. CLARKE of New York, Mr. RICHMOND, Mr. BUTTERFIELD, Ms. BARRAGA´N, Mrs. BEATTY, Ms. ADAMS, Mr. BEYER, Mr. BISHOP of Georgia, Mr. BLUMENAUER, Ms. BLUNT ROCHESTER, Mr. BROWN of Maryland, Mr. CA´RDENAS, Mr. CARSON of Indiana, Ms. CASTOR of Flor- ida, Mr. CASTRO of Texas, Ms. JUDY CHU of California, Mr. CLAY, Mr. CORREA, Mr. CROW, Mr. DANNY K. DAVIS of Illinois, Ms. DEGETTE, Mrs. DEMINGS, Mrs. DINGELL, Mr. ENGEL, Mr. ESPAILLAT, Mr. EVANS, Ms. FUDGE, Mr. GARCI´A of Illinois, Mr. GOMEZ, Mr. GRIJALVA, Ms. HAALAND, Mr. HASTINGS, Mrs. HAYES, Mr. HORSFORD, Mr. JEFFRIES, Ms. JOHNSON of Texas, Mr. JOHNSON of Georgia, Ms. KAPTUR, Mr. KENNEDY, Mr. KILDEE, Mr. KILMER, Mr. LARSON of Connecticut, Mrs. LAWRENCE, Mr. LEVIN of Michigan, Mr. LEWIS, Mr. LOWENTHAL, Mr. LYNCH, Mr. MCEACHIN, Mr. MCGOVERN, Mr. MEEKS, Ms. MENG, Ms. MOORE, Mr. MOULTON, Mr. NADLER, Mrs. NAPOLITANO, Mr. NEGUSE, Ms. NORTON, Ms. OCASIO-CORTEZ, Ms. OMAR, Mr. PAYNE, Ms. PLASKETT, Mr. POCAN, Mr. RASKIN, Mr. RUSH, Ms. SA´NCHEZ, Ms. SCANLON, Ms. SCHAKOWSKY, Mr. DAVID SCOTT of Georgia, Mr. SCOTT of Virginia, Mr. SERRANO, Ms. SEWELL of Alabama, Ms. SHALALA, Mr. SMITH of Washington, Mr. SOTO, Ms. SPEIER, Mr. THOMPSON of Mis- sissippi, Ms. TLAIB, Mr. TONKO, Mrs. TORRES of California, Mrs. TRAHAN, Ms. UNDERWOOD, Ms. VELA´ZQUEZ, Ms. WASSERMAN SCHULTZ, Ms. WATERS, Ms. WILD, Ms. WILSON of Florida, Mr. DEFA- ZIO, and Ms. SPANBERGER) introduced the following bill; which was re- ferred to the Committee on Energy and Commerce, and in addition to the Committee on Natural Resources, for a period to be subsequently de- termined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned VerDate Sep 11 2014 00:11 Apr 25, 2020 Jkt 099200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6652 E:\BILLS\H6585.IH H6585 pamtmann on DSKBC07HB2PROD with BILLS 2 •HR 6585 IH 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 (1) The World Health Organization (WHO) de- 8 clared COVID–19 a ‘‘Public Health Emergency of 9 International Concern’’ on January 30, 2020. By 10 late March 2020, there have been over 470,000 con- 11 firmed cases of, and 20,000 deaths associated with, 12 COVID–19 worldwide. 13 (2) In the United States, cases of COVID–19 14 have quickly surpassed those across the world, and 15 as of April 12, 2020, over 500,000 cases and 20,000 16 deaths have been reported in the United States 17 alone. 18 (3) Early reporting on racial inequities in 19 COVID–19 testing and treatment have renewed calls 20 for the Centers for Disease Control and Prevention 21 and other relevant subagencies within the Depart- 22 VerDate Sep 11 2014 00:11 Apr 25, 2020 Jkt 099200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H6585.IH H6585 pamtmann on DSKBC07HB2PROD with BILLS 3 •HR 6585 IH ment of Health and Human Services to publicly re- 1 lease racial and demographic information to better 2 inform the pandemic response, specifically in com- 3 munities of color and in Limited English Proficient 4 (LEP) communities. 5 (4) The burden of morbidity and mortality in 6 the United States has historically fallen dispropor- 7 tionately on marginalized communities (those who 8 suffer the most from great public health needs and 9 are the most medically underserved). 10 (5) Historically, structures and systems, such 11 as racism, ableism and class oppression, have ren- 12 dered affected individuals more vulnerable to inequi- 13 ties and have prevented people from achieving their 14 optimal health even when there is not a crisis of 15 pandemic proportions. 16 (6) Significant differences in access to health 17 care, specifically to primary health care providers, 18 health care information, and greater perceived dis- 19 crimination in health care place communities of 20 color, individuals with disabilities, and LEP individ- 21 uals at greater risk of receiving delayed, and per- 22 haps poorer, health care. 23 (7) Stark racial inequities across the United 24 States, including unequal access to stable housing, 25 VerDate Sep 11 2014 00:11 Apr 25, 2020 Jkt 099200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H6585.IH H6585 pamtmann on DSKBC07HB2PROD with BILLS 4 •HR 6585 IH quality education, and decent employment signifi- 1 cantly impact the ability of individuals to take care 2 of their most basic health needs. Communities of 3 color are more likely to experience homelessness and 4 struggle with low-paying jobs or unemployment. To 5 date, experts have cited that 2 in 5 Latino residents 6 in New York City, the current epicenter of the 7 COVID–19 pandemic, are recently unemployed as a 8 direct consequence of COVID–19. And at a time 9 when sheltering in place will save lives, less than 1 10 in 5 Black workers and roughly 1 in 6 Latino work- 11 ers are able to work from home. 12 (8) Communities of color experience higher 13 rates of chronic disease and disabilities, such as dia- 14 betes, hypertension, and asthma, than non-Hispanic 15 White communities, which predisposes them to 16 greater risk of complications and mortality should 17 they contract COVID–19. 18 (9) Such communities are made even more vul- 19 nerable to the uncertainty of the preparation, re- 20 sponse, and events surrounding the pandemic public 21 health crisis, COVID–19. For instance, in the recent 22 past, multiple epidemiologic studies and reviews have 23 reported higher rates of hospitalization due to the 24 2009 H1N1 pandemic among the poor, individuals 25 VerDate Sep 11 2014 00:11 Apr 25, 2020 Jkt 099200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H6585.IH H6585 pamtmann on DSKBC07HB2PROD with BILLS 5 •HR 6585 IH with disabilities and preexisting conditions, those liv- 1 ing in impoverished neighborhoods, and individuals 2 of color and ethnic backgrounds in the United 3 States. These findings highlight the urgency to 4 adapt the COVID–19 response to monitor and act 5 on these inequities via data collection and research 6 by race and ethnicity. 7 (10) Research experts recognize that there are 8 underlying differences in illness and death when 9 each of these factors are examined through socio- 10 economic and racial or ethnic lenses. These socially 11 determinant factors of health accelerate disease and 12 degradation. 13 (11) Language barriers are highly correlated 14 with medication noncompliance and inconsistent en- 15 gagement with health systems. Without language ac- 16 cessibility data and research around COVID–19, 17 these communities are less likely to receive critical 18 testing and preventive health services. Yet, to date, 19 the Centers for Disease Control and Prevention do 20 not disseminate COVID–19 messaging in critical 21 languages, including Mandarin Chinese, Spanish, 22 and Korean within the same timeframe as informa- 23 tion in English despite requirements to ensure lim- 24 ited English proficient populations are not discrimi- 25 VerDate Sep 11 2014 00:11 Apr 25, 2020 Jkt 099200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H6585.IH H6585 pamtmann on DSKBC07HB2PROD with BILLS 6 •HR 6585 IH nated against under title VI of the Civil Rights Act 1 of 1964 and subsequent laws and Federal policies. 2 (12) Further, it is critical to disaggregate data 3 further by ancestry to address disparities among 4 Asian American, Native Hawaiian, and Pacific Is- 5 lander groups. According to the National Equity 6 Atlas, while 13 percent of the Asian population over- 7 all lived in poverty in 2015, 39 percent of Burmese 8 people, 29 percent of Hmong people, and 21 percent 9 of Pacific Islanders lived in poverty. 10 (13) Utilizing disaggregation of enrollment in 11 Affordable Care Act-sponsored health insurance, the 12 Asian and Pacific Islander American Health Forum 13 found that prior to the passage of the Patient Pro- 14 tection and Affordable Care Act (Public Law 111– 15 148), Korean Americans had a high uninsured rate 16 of 23 percent, compared to just 12 percent for all 17 Asian Americans. Developing targeted outreach ef- 18 forts assisted 1,000,000 people and resulted in a 56- 19 percent decrease in the uninsured among the Asian, 20 Native Hawaiian, and Pacific Islander population. 21 Such efforts show that disaggregated data is essen- 22 tial to public health mobilizations efforts. 23 (14) Without clear understanding of how 24 COVID–19 impacts marginalized racial and ethnic 25 VerDate Sep 11 2014 00:11 Apr 25, 2020 Jkt 099200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H6585.IH H6585 pamtmann on DSKBC07HB2PROD with BILLS 7 •HR 6585 IH communities, there will be exacerbated risk of en- 1 dangering the most historically vulnerable of our 2 Nation. 3 (15) The consequences of misunderstanding the 4 racial and ethnic impact of COVID–19 expound be- 5 yond communities of color such that it would impact 6 all. 7 (16) Race and ethnicity are valuable research 8 and practice variables when used and interpreted ap- 9 propriately. Health data collected on patients by 10 race and ethnicity will boost and more efficiently di- 11 rect critical resources and inform risk communica- 12 tion development in languages and at appropriate 13 health literacy levels, which resonate with historically 14 vulnerable communities of color. 15 (17) To date, there is no public standardized 16 and comprehensive race and ethnicity data reposi- 17 tory of COVID–19 testing, hospitalizations, or mor- 18 tality. The inconsistency of data collection by Fed- 19 eral, State, and local health authorities, and the in- 20 ability to access data by public research institutions 21 and academic organizations, poses a threat to anal- 22 ysis and synthesis of the pandemic impact on com- 23 munities of color. However, research and medical ex- 24 perts of Historically Black Colleges and Universities, 25 VerDate Sep 11 2014 00:11 Apr 25, 2020 Jkt 099200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H6585.IH H6585 pamtmann on DSKBC07HB2PROD with BILLS 8 •HR 6585 IH academic health care institutions which are histori- 1 cally and geographically embedded in minoritized 2 and marginalized communities, generally also pos- 3 sess rapport with the communities they serve. They 4 are well-positioned, as trusted thought leaders and 5 health care service providers, to collect data and con- 6 duct research toward creating holistic solutions to 7 remedy the inequitable impact of this and future 8 public health crises. 9 (18) Well-designed, ethically sound research 10 aligns with the goals of medicine, addresses ques- 11 tions relevant to the population among whom the 12 study will be carried out, balances the potential for 13 benefit against the potential for harm, employs 14 study designs that will yield scientifically valid and 15 significant data, and generates useful knowledge. 16 (19) The dearth of racially and ethnically 17 disaggregated data reflecting the health of commu- 18 nities of color underlies the challenges of a fully in- 19 formed public health response. 20 (20) Without collecting race and ethnicity data 21 associated with COVID–19 testing, hospitalizations, 22 morbidities, and mortalities, as well as publicly dis- 23 closing it, communities of color will remain at great- 24 er risk of disease and death. 25 VerDate Sep 11 2014 00:11 Apr 25, 2020 Jkt 099200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H6585.IH H6585 pamtmann on DSKBC07HB2PROD with BILLS 9 •HR 6585 IH SEC. 3. EMERGENCY FUNDING FOR FEDERAL DATA COL- 1 LECTION ON THE RACIAL, ETHNIC, AND 2 OTHER DEMOGRAPHIC DISPARITIES OF 3 COVID–19. 4 To conduct or support data collection on the racial, 5 ethnic, and other demographic implications of COVID–19 6 in the United States and its territories, including support 7 to assist in the capacity building for State and local public 8 health departments to collect and transmit racial, ethnic, 9 and other demographic data to the relevant Department 10 of Health and Human Services agencies, there is author- 11 ized to be appropriated— 12 (1) to the Centers for Disease Control and Pre- 13 vention, $12,000,000; 14 (2) to State, territorial, and Tribal public 15 health agencies, distributed proportionally based on 16 the total population of their residents who are en- 17 rolled in Medicaid or who have no health insurance, 18 $15,000,000; 19 (3) to the Indian Health Service, Indian Tribes 20 and Tribal organizations (as defined in section 4 of 21 the Indian Self-Determination and Education Assist- 22 ance Act), and urban Indian organizations (as de- 23 fined in section 4 of the Indian Health Care Im- 24 provement Act), $3,000,000; 25 VerDate Sep 11 2014 00:11 Apr 25, 2020 Jkt 099200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H6585.IH H6585 pamtmann on DSKBC07HB2PROD with BILLS 10 •HR 6585 IH (4) to the Centers for Medicare & Medicaid 1 Services, $5,000,000; 2 (5) to the Food and Drug Administration, 3 $5,000,000; 4 (6) to the Agency for Healthcare Research and 5 Quality, $5,000,000; and 6 (7) to the Office of the National Coordinator 7 for Health Information Technology, $5,000,000. 8 SEC. 4. COVID–19 DATA COLLECTION AND DISCLOSURE. 9 (a) DATA COLLECTION.—The Secretary of Health 10 and Human Services (referred to in this Act as the ‘‘Sec- 11 retary’’), acting through the Director of the Centers for 12 Disease Control and Prevention and the Administrator of 13 the Centers for Medicare & Medicaid Services, shall make 14 publicly available on the website of the Centers for Disease 15 Control and Prevention data collected across all surveil- 16 lance systems relating to COVID–19, disaggregated by 17 race, ethnicity, sex, age, primary language, socioeconomic 18 status, disability status, and county, including the fol- 19 lowing: 20 (1) Data related to all COVID–19 testing, in- 21 cluding the number of individuals tested and the 22 number of tests that were positive. 23 VerDate Sep 11 2014 00:11 Apr 25, 2020 Jkt 099200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H6585.IH H6585 pamtmann on DSKBC07HB2PROD with BILLS 11 •HR 6585 IH (2) Data related to treatment for COVID–19, 1 including hospitalizations and intensive care unit ad- 2 missions. 3 (3) Data related to COVID–19 outcomes, in- 4 [Text truncated for display. Full text available on Congress.gov.]