[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1370 Introduced in House (IH)]
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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-
Cortez, 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 Committee 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 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 of 2021''.
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 January 2021, there have been over 22,000,000
confirmed cases of, and 383,351 deaths associated with, COVID-
19 in the United States.
(2) From the beginning of this pandemic, Black, Brown, and
American Indian/Alaska Native (in this section referred to as
``AI/AN'') people in the United States have suffered the
largest burden of illness, hospitalization, and death from
COVID-19. The Centers for Disease Control and Prevention (CDC)
reports that AI/AN people are 4 times as likely as White people
to be hospitalized for COVID-19, and that Black and Hispanic/
Latino people are 2.8 times as likely to die of COVID-19 as
White people.
(3) Historically, structures and systems such as racism,
ableism, and class oppression have rendered affected Black and
Brown communities more vulnerable to inequities and have
prevented people from achieving optimal health even when there
is not a crisis of pandemic proportions, highlighting that
racism and not race presents as a risk factor driving
inequities in illness and death.
(4) Significant differences in access to health care,
specifically to primary health care providers, health care
information, and greater perceived discrimination in health
care place Black, Brown, and AI/AN communities, individuals
with disabilities, and Limited English Proficient individuals
at greater risk of receiving delayed, and perhaps poorer,
health care.
(5) Stark racial inequities across the United States,
including unequal access to stable housing, quality education,
and decent employment, significantly impact the ability of
Black, Hispanic/Latinx, and AI/AN individuals to take care of
their most basic health needs. Black and Brown communities are
more likely to experience homelessness and struggle with low-
paying jobs or unemployment. An analysis by the University of
New Hampshire found that in every month between March and
August 2020, Black and Latino workers had significantly higher
unemployment rates than White workers, even after adjusting for
age and education status.
(6) Black, Hispanic/Latinx, and AI/AN communities
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.
(7) 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.
(8) Language barriers are highly correlated with medication
noncompliance and inconsistent engagement with health systems.
Without language accessibility data and research around COVID-
19, communities with limited English proficiency 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.
(9) 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.
(10) 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.
(11) 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. A recent national study found that
American Indian/Alaska Natives were 3.5 times more likely to be
infected with COVID-19, however that data excluded 27 States as
they had reported less than 70 percent of race/ethnicity data
to the Centers for Disease Control and Prevention making it
impossible to include them in the analysis thus creating a
significant data gap for understanding the impact of COVID-19
on this vulnerable population.
(12) The consequences of misunderstanding the racial and
ethnic impact of COVID-19 expound beyond communities of color
such that it would impact all.
(13) 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.
(14) To date, race and ethnicity data on COVID-19 cases,
test, hospitalizations, deaths, and vaccinations is incomplete
and lacking. The inconsistency of data collection by Federal,
State, and local health authorities poses a threat to analysis
and synthesis of the pandemic impact on Black, Hispanic/Latinx,
and AI/AN communities. However, research and medical experts of
Historically Black Colleges and Universities and Tribal
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.
(15) 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.
(16) The dearth of racially and ethnically disaggregated
data reflecting the health of Black, Hispanic/Latinx, and AI/AN
communities underlies the challenges of a fully informed public
health response.
(17) Without collecting race and ethnicity data associated
with COVID-19 vaccinations, testing, hospitalizations,
morbidities, and mortalities, as well as publicly disclosing
it, Black, Hispanic/Latinx, and AI/AN communities 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).
(4) Data related to COVID-19 vaccinations, including--
(A) the number of vaccines administered;
(B) the number of vaccinations offered, accepted,
and refused;
(C) the most common reasons for refusal; and
(D) the percentage of vaccine doses allocated and
administered to each priority group.
(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) Summary.--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, vaccination 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.
(h) Tribal Exception.--Indian Tribes may opt out of any of the
requirements of this section.
SEC. 5. COMMISSION ON ENSURING DATA FOR HEATH EQUITY.
(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 Data for Heath Equity'' (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 public health emergencies.
(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, or an urban Indian health
representative, 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) at least 3 independent experts of racially and
ethnically diverse representation 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 health outcomes;
(3) gather available data related to treatment of
individuals with disabilities during the COVID-19 pandemic and
other public health emergencies, including access to
vaccinations, 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 treatment of such individuals;
(4) solicit input from public health officials, community-
connected organizations, health care providers, State and local
agency officials, Tribal 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 1 year after the date of enactment of
this Act, 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 and in
future public health emergencies, 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, 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, local, and
Tribal response to public health emergencies;
(3) how to improve demographic data collection related to
COVID-19 and other public health emergencies in the short- and
long-term, including how to continue to grow and value the
Tribal sovereignty of data and information concerning urban and
rural Tribal communities;
(4) to the extent possible, an 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, an 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 vaccinations, testing, and treatment
during the COVID-19 pandemic and future public health
emergencies; and
(8) to the extent possible, an 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.
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