Title: Equitable Data Collection and Disclosure on COVID-19 Act
Policy area: Health

Summary:
Equitable Data Collection and Disclosure on COVID-19 Act
This bill establishes the Commission on Ensuring Health Equity During the COVID-19 Public Health Emergency and adds reporting requirements for certain demographic data related to COVID-19 (i.e., coronavirus disease 2019).
Among other activities, the commission must (1) determine approaches to using data to reduce demographic disparities in COVID-19 prevalence and outcomes, and (2) submit findings and recommendations to Congress on a specified timeline until the end of the public health emergency.
During the public health emergency, the Centers for Disease Control and Prevention (CDC) and the Centers for Medicare & Medicaid Services must publish, and update daily, data on COVID-19 testing, treatment, and outcomes that is disaggregated by race, ethnicity, and other demographic characteristics on the CDC website. In addition, the Indian Health Service shall consult with tribes with respect to COVID-19 data collection and reporting. The Department of Health and Human Services must make a summary of final statistics related to COVID-19 publicly available and report specified information to Congress within 60 days of the end of the public health emergency.

[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[S. 3850 Introduced in Senate (IS)]

<DOC>






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. Whitehouse, 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 Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Equitable Data Collection and 
Disclosure on COVID-19 Act''.

SEC. 2. FINDINGS.

    Congress makes the following findings:
            (1) The World Health Organization (WHO) declared COVID-19 a 
        ``Public Health Emergency of International Concern'' on January 
        30, 2020. By late March 2020, there have been over 470,000 
        confirmed cases of, and 20,000 deaths associated with, COVID-19 
        worldwide.
            (2) In the United States, cases of COVID-19 have quickly 
        surpassed those across the world, and as of April 12, 2020, 
        over 500,000 cases and 20,000 deaths have been reported in the 
        United States alone.
            (3) Early reporting on racial inequities in COVID-19 
        testing and treatment has renewed calls for the Centers for 
        Disease Control and Prevention and other relevant subagencies 
        within the Department of Health and Human Services to publicly 
        release racial and demographic information to better inform the 
        pandemic response, specifically in communities of color and in 
        Limited English Proficient (LEP) communities.
            (4) The burden of morbidity and mortality in the United 
        States has historically fallen disproportionately on 
        marginalized communities (those who suffer the most from great 
        public health needs and are the most medically underserved).
            (5) Historically, structures and systems such as racism, 
        ableism and class oppression, have rendered affected 
        individuals more vulnerable to inequities and have prevented 
        people from achieving optimal health even when there is not a 
        crisis of pandemic proportions.
            (6) Significant differences in access to health care, 
        specifically to primary health care providers, health care 
        information, and greater perceived discrimination in health 
        care place communities of color, individuals with disabilities, 
        and LEP individuals at greater risk of receiving delayed, and 
        perhaps poorer, health care.
            (7) Stark racial inequities across the United States, 
        including unequal access to stable housing, quality education, 
        and decent employment, significantly impact the ability of 
        individuals to take care of their most basic health needs. 
        Communities of color are more likely to experience homelessness 
        and struggle with low-paying jobs or unemployment. To date, 
        experts have cited that 2 in 5 Latino residents in New York 
        City, the current epicenter of the COVID-19 pandemic, are 
        recently unemployed as a direct consequence of COVID-19. And at 
        a time when sheltering in place will save lives, less than 1 in 
        5 Black workers and roughly 1 in 6 Latino workers are able to 
        work from home.
            (8) Communities of color experience higher rates of chronic 
        disease and disabilities, such as diabetes, hypertension, and 
        asthma, than non-Hispanic White communities, which predisposes 
        them to greater risk of complications and mortality should they 
        contract COVID-19.
            (9) Such communities are made even more vulnerable to the 
        uncertainty of the preparation, response, and events 
        surrounding the pandemic public health crisis, COVID-19. For 
        instance, in the recent past, multiple epidemiologic studies 
        and reviews have reported higher rates of hospitalization due 
        to the 2009 H1N1 pandemic among the poor, individuals with 
        disabilities and preexisting conditions, those living in 
        impoverished neighborhoods, and individuals of color and 
        marginalized ethnic backgrounds in the United States. These 
        findings highlight the urgency to adapt the COVID-19 response 
        to monitor and act on these inequities via data collection and 
        research by race and ethnicity.
            (10) Research experts recognize that there are underlying 
        differences in illness and death when each of these factors is 
        examined through socioeconomic and racial or ethnic lenses. 
        These socially determinant factors of health accelerate disease 
        and degradation.
            (11) Language barriers are highly correlated with 
        medication noncompliance and inconsistent engagement with 
        health systems. Without language accessibility data and 
        research around COVID-19, these communities are less likely to 
        receive critical testing and preventive health services. Yet, 
        to date, the Centers for Disease Control and Prevention does 
        not disseminate COVID-19 messaging in critical languages, 
        including Mandarin Chinese, Spanish, and Korean within the same 
        timeframe as information in English despite requirements to 
        ensure limited English proficient populations are not 
        discriminated against under title VI of the Civil Rights Act of 
        1964 and subsequent laws and Federal policies.
            (12) Further, it is critical to disaggregate data further 
        by ancestry to address disparities among Asian American, Native 
        Hawaiian, and Pacific Islander groups. According to the 
        National Equity Atlas, while 13 percent of the Asian population 
        overall lived in poverty in 2015, 39 percent of Burmese people, 
        29 percent of Hmong people, and 21 percent of Pacific Islanders 
        lived in poverty.
            (13) Utilizing disaggregation of enrollment in Affordable 
        Care Act-sponsored health insurance, the Asian and Pacific 
        Islander American Health Forum found that prior to the passage 
        of the Patient Protection and Affordable Care Act (Public Law 
        111-148), Korean Americans had a high uninsured rate of 23 
        percent, compared to just 12 percent for all Asian Americans. 
        Developing targeted outreach efforts assisted 1,000,000 people 
        and resulted in a 56-percent decrease in the uninsured among 
        the Asian, Native Hawaiian, and Pacific Islander population. 
        Such efforts show that disaggregated data is essential to 
        public health mobilizations efforts.
            (14) Without clear understanding of how COVID-19 impacts 
        marginalized racial and ethnic communities, there will be 
        exacerbated risk of endangering the most historically 
        vulnerable of our Nation.
            (15) The consequences of misunderstanding the racial and 
        ethnic impact of COVID-19 expound beyond communities of color 
        such that it would impact all.
            (16) Race and ethnicity are valuable research and practice 
        variables when used and interpreted appropriately. Health data 
        collected on patients by race and ethnicity will boost and more 
        efficiently direct critical resources and inform risk 
        communication development in languages and at appropriate 
        health literacy levels, which resonate with historically 
        vulnerable communities of color.
            (17) To date, there is no public standardized and 
        comprehensive race and ethnicity data repository of COVID-19 
        testing, hospitalizations, or mortality. The inconsistency of 
        data collection by Federal, State, and local health 
        authorities, and the inability to access data by public 
        research institutions and academic organizations, poses a 
        threat to analysis and synthesis of the pandemic impact on 
        communities of color. However, research and medical experts of 
        Historically Black Colleges and Universities, academic health 
        care institutions which are historically and geographically 
        embedded in minoritized and marginalized communities, generally 
        also possess rapport with the communities they serve. They are 
        well-positioned, as trusted thought leaders and health care 
        service providers, to collect data and conduct research toward 
        creating holistic solutions to remedy the inequitable impact of 
        this and future public health crises.
            (18) Well-designed, ethically sound research aligns with 
        the goals of medicine, addresses questions relevant to the 
        population among whom the study will be carried out, balances 
        the potential for benefit against the potential for harm, 
        employs study designs that will yield scientifically valid and 
        significant data, and generates useful knowledge.
            (19) The dearth of racially and ethnically disaggregated 
        data reflecting the health of communities of color underlies 
        the challenges of a fully informed public health response.
            (20) Without collecting race and ethnicity data associated 
        with COVID-19 testing, hospitalizations, morbidities, and 
        mortalities, as well as publicly disclosing it, communities of 
        color will remain at greater risk of disease and death.

SEC. 3. EMERGENCY FUNDING FOR FEDERAL DATA COLLECTION ON THE RACIAL, 
              ETHNIC, AND OTHER DEMOGRAPHIC DISPARITIES OF COVID-19.

    To conduct or support data collection on the racial, ethnic, and 
other demographic implications of COVID-19 in the United States and its 
territories, including support to assist in the capacity building for 
State and local public health departments to collect and transmit 
racial, ethnic, and other demographic data to the relevant Department 
of Health and Human Services agencies, there is authorized to be 
appropriated--
            (1) to the Centers for Disease Control and Prevention, 
        $12,000,000;
            (2) to State and territorial public health agencies, 
        distributed proportionally based on the total population of 
        their residents who are enrolled in Medicaid or who have no 
        health insurance, $15,000,000;
            (3) to the Indian Health Service, Indian Tribes and Tribal 
        organizations (as defined in section 4 of the Indian Self-
        Determination and Education Assistance Act), and urban Indian 
        organizations (as defined in section 4 of the Indian Health 
        Care Improvement Act), $3,000,000;
            (4) to the Centers for Medicare & Medicaid Services, 
        $5,000,000;
            (5) to the Food and Drug Administration, $5,000,000;
            (6) to the Agency for Healthcare Research and Quality, 
        $5,000,000; and
            (7) to the Office of the National Coordinator for Health 
        Information Technology, $5,000,000.

SEC. 4. COVID-19 DATA COLLECTION AND DISCLOSURE.

    (a) Data Collection.--The Secretary of Health and Human Services 
(referred to in this Act as the ``Secretary''), acting through the 
Director of the Centers for Disease Control and Prevention and the 
Administrator of the Centers for Medicare & Medicaid Services, shall 
make publicly available on the website of the Centers for Disease 
Control and Prevention data collected across all surveillance systems 
relating to COVID-19, disaggregated by race, ethnicity, sex, age, 
primary language, socioeconomic status, disability status, and county, 
including the following:
            (1) Data related to all COVID-19 testing, including the 
        number of individuals tested and the number of tests that were 
        positive.
            (2) Data related to treatment for COVID-19, including 
        hospitalizations and intensive care unit admissions.
            (3) Data related to COVID-19 outcomes, including total 
        fatalities and case fatality rates (expressed as the proportion 
        of individuals who were infected with COVID-19 and died from 
        the virus).
    (b) Application of Standards.--To the extent practicable, data 
collection under this section shall follow standards developed by the 
Department of Health and Human Services Office of Minority Health and 
be collected, analyzed, and reported in accordance with the standards 
promulgated by the Assistant Secretary for Planning and Evaluation 
under title XXXI of the Public Health Service Act (42 U.S.C. 300kk et 
seq.).
    (c) Timeline.--The data made available under this section shall be 
updated on a daily basis throughout the public health emergency.
    (d) Privacy.--In publishing data under this section, the Secretary 
shall take all necessary steps to protect the privacy of individuals 
whose information is included in such data, including--
            (1) complying with privacy protections provided under the 
        regulations promulgated under section 264(c) of the Health 
        Insurance Portability and Accountability Act of 1996; and
            (2) protections from all inappropriate internal use by an 
        entity that collects, stores, or receives the data, including 
        use of such data in determinations of eligibility (or continued 
        eligibility) in health plans, and from inappropriate uses.
    (e) Indian Health Service.--The Indian Health Service shall consult 
with Indian Tribes and confer with urban Indian organizations on data 
collection and reporting for purposes of this Act.
    (f) Report.--Not later than 60 days after the date on which the 
Secretary certifies that the public health emergency related to COVID-
19 has ended, the Secretary shall make publicly available a summary of 
the final statistics related to COVID-19.
    (g) Report.--Not later than 60 days after the date on which the 
Secretary certifies that the public health emergency related to COVID-
19 has ended, the Department of Health and Human Services shall compile 
and submit to the Committee on Health, Education, Labor, and Pensions 
and the Committee on Finance of the Senate and the Committee on Energy 
and Commerce and the Committee on Ways and Means of the House of 
Representatives a preliminary report--
            (1) describing the testing, hospitalization, mortality 
        rates, and preferred language of patients associated with 
        COVID-19 by race and ethnicity; and
            (2) proposing evidenced-based response strategies to 
        safeguard the health of these communities in future pandemics.

SEC. 5. COMMISSION ON ENSURING HEATH EQUITY DURING THE COVID-19 PUBLIC 
              HEALTH EMERGENCY.

    (a) In General.--Not later than 30 days after the date of enactment 
of this Act, the Secretary shall establish a commission, to be known as 
the ``Commission on Ensuring Heath Equity During the COVID-19 Public 
Health Emergency'' (referred to in this section as the ``Commission'') 
to provide clear and robust guidance on how to improve the collection, 
analysis, and use of demographic data in responding to future waves of 
the coronavirus.
    (b) Membership and Chairperson.--
            (1) Membership.--The Commission shall be composed of--
                    (A) the Director of the Centers for Disease Control 
                and Prevention;
                    (B) the Director of the National Institutes of 
                Health;
                    (C) the Commissioner of Food and Drugs;
                    (D) the Administrator of the Federal Emergency 
                Management Agency;
                    (E) the Director of the National Institute on 
                Minority Health and Health Disparities;
                    (F) the Director of the Indian Health Service;
                    (G) the Administrator of the Centers for Medicare & 
                Medicaid Services;
                    (H) the Director of the Agency for Healthcare 
                Research and Quality;
                    (I) the Surgeon General;
                    (J) the Administrator of the Health Resources and 
                Services Administration;
                    (K) the Director of the Office of Minority Health;
                    (L) the Director of the Office of Women's Health;
                    (M) the Chairperson of the National Council on 
                Disability;
                    (N) at least 4 State, local, territorial, and 
                Tribal public health officials representing departments 
                of public health, who shall represent jurisdictions 
                from different regions of the United States with 
                relatively high concentrations of historically 
                marginalized populations, to be appointed by the 
                Secretary; and
                    (O) racially and ethnically diverse representation 
                from at least 3 independent experts with knowledge or 
                field experience with racial and ethnic disparities in 
                public health appointed by the Secretary.
            (2) Chairperson.--The President of the National Academies 
        of Sciences, Engineering, and Medicine, or designee, shall 
        serve as the chairperson of the Commission.
    (c) Duties.--The Commission shall--
            (1) examine barriers to collecting, analyzing, and using 
        demographic data;
            (2) determine how to best use such data to promote health 
        equity across the United States and reduce racial, Tribal, and 
        other demographic disparities in COVID-19 prevalence and 
        outcomes;
            (3) gather available data related to COVID-19 treatment of 
        individuals with disabilities, including denial of treatment 
        for pre-existing conditions, removal or denial of disability 
        related equipment (including ventilators and CPAP machines), 
        and data on completion of DNR orders, and identify barriers to 
        obtaining accurate and timely data related to COVID-19 
        treatment of such individuals;
            (4) solicit input from public health officials, community-
        connected organizations, health care providers, State and local 
        agency officials, and other experts on barriers to, and best 
        practices for, collecting demographic data; and
            (5) recommend policy changes that the data indicates are 
        necessary to reduce disparities.
    (d) Report.--Not later than 60 days after the date of enactment of 
this Act, and every 180 days thereafter until the Secretary certifies 
that the public health emergency related to COVID-19 has ended, the 
Commission shall submit a written report of its findings and 
recommendations to Congress and post such report on the website of the 
Department of Health and Human Services. Such reports shall contain 
information concerning--
            (1) how to enhance State, local, territorial, and Tribal 
        capacity to conduct public health research on COVID-19, with a 
        focus on expanded capacity to analyze data on disparities 
        correlated with race, ethnicity, income, sex, age, disability 
        status, specific geographic areas, and other relevant 
        demographic characteristics, and an analysis of what 
        demographic data is currently being collected about COVID-19, 
        the accuracy of that data and any gaps, how this data is 
        currently being used to inform efforts to combat COVID-19, and 
        what resources are needed to supplement existing public health 
        data collection;
            (2) how to collect, process, and disclose to the public the 
        data described in paragraph (1) in a way that maintains 
        individual privacy while helping direct the State and local 
        response to the virus;
            (3) how to improve demographic data collection related to 
        COVID-19 in the short- and long-term, including how to continue 
        to grow and value the Tribal sovereignty of data and 
        information concerning Tribal communities;
            (4) to the extent possible, a preliminary analysis of 
        racial and other demographic disparities in COVID-19 mortality, 
        including an analysis of comorbidities and case fatality rates;
            (5) to the extent possible, a preliminary analysis of sex, 
        gender, sexual orientation, and gender identity disparities in 
        COVID-19 treatment and mortality;
            (6) an analysis of COVID-19 treatment of individuals with 
        disabilities, including equity of access to treatment and 
        equipment and intersections of disability status with other 
        demographic factors, including race, and recommendations for 
        how to improve transparency and equity of treatment for such 
        individuals during the COVID-19 public health emergency and 
        future emergencies;
            (7) how to support State, local, and Tribal capacity to 
        eliminate barriers to COVID-19 testing and treatment; and
            (8) to the extent possible, a preliminary analysis of 
        Federal Government policies that disparately exacerbate the 
        COVID-19 impact, and recommendations to improve racial and 
        other demographic disparities in health outcomes.
    (e) Authorization of Appropriations.--There is authorized to be 
appropriated such sums as may be necessary to carry out this section.
                                 <all>