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S02051 Summary:

Requires the department of health to collect and report certain data concerning COVID-19 including racial, ethnic, and other demographic disparities throughout the state which are contributing to the amount of positive cases and the care provided for such.
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S02051 Actions:

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S02051 Text:

                STATE OF NEW YORK
                               2021-2022 Regular Sessions
                    IN SENATE
                                    January 19, 2021
        Introduced  by  Sen. SANDERS -- read twice and ordered printed, and when
          printed to be committed to the Committee on Health
        AN ACT in relation to requiring the New York state department of  health
          to collect and report certain data concerning COVID-19
          The  People of the State of New York, represented in Senate and Assem-
        bly, do enact as follows:
     1    Section 1. Short title. This act shall be known and may  be  cited  as
     2  the "equitable data collection and disclosure on COVID-19 act".
     3    §  2.  Findings.  (a)  The  World  Health  Organization (WHO) declared
     4  COVID-19 a "public health emergency of international concern" on January
     5  30, 2020. By late March 2020, there have  been  over  470,000  confirmed
     6  cases of, and 20,000 deaths associated with, COVID-19 worldwide.
     7    (b)  In  the  United  States, cases of COVID-19 have quickly surpassed
     8  those across the world, and as of April 12, 2020, over 500,000 cases and
     9  20,000 deaths have been reported in the United States alone.
    10    (c) Reports have shown  racial  inequities  in  COVID-19  testing  and
    11  treatment,  specifically  in communities of color and in Limited English
    12  Proficient (LEP) communities.
    13    (d) The burden of morbidity and mortality in  the  United  States  has
    14  historically  fallen  disproportionately  on  marginalized  communities,
    15  those who suffer the most from great public health  needs  and  are  the
    16  most medically underserved.
    17    (e)  Historically, structures and systems, such as racism, ableism and
    18  class oppression, have rendered affected individuals more vulnerable  to
    19  inequities and have prevented people from achieving their optimal health
    20  even when there is not a crisis of pandemic proportions.
    21    (f)  Significant differences in access to health care, specifically to
    22  primary health care providers,  health  care  information,  and  greater
    23  perceived  discrimination  in  health  care  place communities of color,
    24  individuals with disabilities, and LEP individuals at  greater  risk  of
    25  receiving delayed, and perhaps poorer, health care.

         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.

        S. 2051                             2
     1    (g)  Communities  of  color experience higher rates of chronic disease
     2  and disabilities, such as diabetes, hypertension, and asthma, than  non-
     3  Hispanic  White  communities,  which predisposes them to greater risk of
     4  complications and mortality should they contract COVID-19.
     5    (h)  Such communities are made even more vulnerable to the uncertainty
     6  of the preparation, response, and events surrounding the pandemic public
     7  health crisis, COVID-19. For instance,  in  the  recent  past,  multiple
     8  epidemiologic  studies  and reviews have reported higher rates of hospi-
     9  talization due to the 2009 H1N1 pandemic  among  the  poor,  individuals
    10  with  disabilities  and preexisting conditions, those living in impover-
    11  ished neighborhoods, and individuals of color and ethnic backgrounds  in
    12  the  United  States.   These findings highlight the urgency to adapt the
    13  COVID-19 response to monitor  and  act  on  these  inequities  via  data
    14  collection and research by race and ethnicity.
    15    (i)  Research  experts recognize that there are underlying differences
    16  in illness and death when each of these  factors  are  examined  through
    17  socioeconomic  and  racial or ethnic lenses.  These socially determinant
    18  factors of health accelerate disease and degradation.
    19    (j) Without clear understanding of how COVID-19  impacts  marginalized
    20  racial  and ethnic communities, there will be exacerbated risk of endan-
    21  gering the most historically vulnerable of our nation.
    22    (k) The consequences of misunderstanding the racial and ethnic  impact
    23  of  COVID-19  extends  beyond  communities  of  color such that it would
    24  impact all.
    25    (l) Race and ethnicity are valuable research  and  practice  variables
    26  when  used  and  interpreted  appropriately.  Health  data  collected on
    27  patients by race and ethnicity will boost and  more  efficiently  direct
    28  critical   resources   and  inform  risk  communication  development  in
    29  languages and at appropriate health literacy levels, which resonate with
    30  historically vulnerable communities of color.
    31    (m) The dearth of racially and ethnically disaggregated data  reflect-
    32  ing  the  health  of  communities of color underlies the challenges of a
    33  fully informed public health response.
    34    (n) Without collecting race and ethnicity data associated with  COVID-
    35  19  testing,  hospitalizations, morbidities, and mortalities, as well as
    36  publicly disclosing it, communities of color will remain at greater risk
    37  of disease and death.
    38    § 3. Emergency funding  for  state  data  collection  on  the  racial,
    39  ethnic,  and other demographic disparities of COVID-19. Funding shall be
    40  appropriated from the general fund to conduct or support data collection
    41  on the racial, ethnic, and other demographic implications of COVID-19 in
    42  New York state, including support to assist in the capacity building for
    43  state and local  public  health  departments  to  collect  and  transmit
    44  racial, ethnic, and other demographic data to the relevant state depart-
    45  ment of health agencies.
    46    § 4. COVID-19 data collection and disclosure. (a) Data collection. The
    47  commissioner  of  health,  shall  make publicly available on the depart-
    48  ment's website of the data collected  across  all  surveillance  systems
    49  relating to COVID-19, disaggregated by race, ethnicity, sex, age, prima-
    50  ry  language,  socioeconomic  status,  disability  status,  and  county,
    51  including the following:
    52    (1) data related to all COVID-19  testing,  including  the  number  of
    53  individuals tested and the number of tests that were positive;
    54    (2) data related to treatment for COVID-19, including hospitalizations
    55  and intensive care unit admissions; and

        S. 2051                             3
     1    (3)  data related to COVID-19 outcomes, including total fatalities and
     2  case fatality rates, expressed as the proportion of individuals who were
     3  infected with COVID-19 and died from the virus.
     4    (b)  Timeline.  The  data  made  available under this section shall be
     5  updated daily throughout the public health emergency.
     6    (c) Privacy. In publishing data under this section,  the  commissioner
     7  of health shall take all necessary steps to protect the privacy of indi-
     8  viduals  whose  information is included in such data, including, but not
     9  limited to:
    10    (1) complying with privacy protections provided under the  regulations
    11  promulgated  under the federal Health Insurance Portability and Account-
    12  ability Act of 1996; and
    13    (2) protections from all inappropriate internal use by an entity  that
    14  collects, stores, or receives data, including use of such data in deter-
    15  minations  of  eligibility or continued eligibility in health plans, and
    16  from inappropriate uses.
    17    (d) Consultation with Indian tribes. The department  of  health  shall
    18  consult with Indian tribes and confer with urban Indian organizations on
    19  data collection and reporting.
    20    (f)  Report; public. No later than 60 days after the date on which the
    21  commissioner of  health  certifies  that  the  public  health  emergency
    22  related to COVID-19 has ended, a summary of the final statistics related
    23  to COVID-19 shall be made public.
    24    (g) Report; legislature. No later than 60 days after the date on which
    25  the  commissioner  certifies that the public health emergency related to
    26  COVID-19 has ended, the department of health shall compile and submit to
    27  the senate committee on health, the senate  committee  on  finance,  the
    28  assembly  committee  on  ways  and  means  and the assembly committee on
    29  health a preliminary report:
    30    (1) describing the  testing,  hospitalization,  mortality  rates,  and
    31  preferred  language  of  patients  associated  with COVID-19 by race and
    32  ethnicity; and
    33    (2) proposing evidenced-based response  strategies  to  safeguard  the
    34  health of such communities in future pandemics.
    35    §  5.  Commission on ensuring health equity during the COVID-19 public
    36  health emergency. (a) Establishment. No later than  30  days  after  the
    37  effective date of this act, the commissioner of health shall establish a
    38  commission,  to  be  known  as the "Commission on Ensuring Health Equity
    39  During the COVID-19  Public  Health  Emergency"  (referred  to  in  this
    40  section as the "Commission") to provide clear and robust guidance on how
    41  to  improve  the  collection,  analysis,  and use of demographic data in
    42  responding to future waves of the coronavirus.
    43    (b) Membership and chairperson.  (1)  The  Commission  shall  have  17
    44  members which shall consist of:
    45    (A) the commissioner of the department of health;
    46    (B) the secretary of state;
    47    (C) the commissioner of homeland security and emergency services;
    48    (D)  the director of the office of minority health and health dispari-
    49  ties prevention;
    50    (E) the director of the office of emergency management;
    51    (F) the director of the office of mental health;
    52    (G) three members appointed by the temporary president of the  senate;
    53  one  member  appointed  by  the  senate  minority  leader; three members
    54  appointed by the speaker of the assembly and one member appointed by the
    55  assembly minority leader; and

        S. 2051                             4
     1    (H) racially and ethnically diverse representation from at least three
     2  independent experts with knowledge or field experience with  racial  and
     3  ethnic  disparities  in  public  health appointed by the commissioner of
     4  health.
     5    (2)  The  commissioner  of the department of health shall serve as the
     6  chairperson of the Commission.
     7    (c) Duties. The Commission shall:
     8    (1) examine barriers to collecting, analyzing, and  using  demographic
     9  data;
    10    (2)  determine  how  to  best  use  such data to promote health equity
    11  across the state  and  reduce  racial,  Tribal,  and  other  demographic
    12  disparities in COVID-19 prevalence and outcomes;
    13    (3) gather available data related to COVID-19 treatment of individuals
    14  with disabilities, including denial of treatment for pre-existing condi-
    15  tions,  removal  or  denial  of  disability related equipment, including
    16  ventilators and CPAP, and data on completion of DNR orders, and identify
    17  barriers in obtaining accurate  and  timely  data  related  to  COVID-19
    18  treatment of such individuals;
    19    (4)  solicit  input  from public health officials, community-connected
    20  organizations, health care providers, state and local agency  officials,
    21  and  other  experts  on  barriers to, and best practices for, collecting
    22  demographic data; and
    23    (5) recommend policy changes that the data indicates are necessary  to
    24  reduce disparities.
    25    (d)  Report.  No  later  than 60 days after the effective date of this
    26  act, and every 180 days thereafter until the commissioner certifies that
    27  the public health emergency related to COVID-19 has ended,  the  Commis-
    28  sion  shall  submit a written report of its findings and recommendations
    29  to the governor and the legislature and post such report on the  depart-
    30  ment  of  health's  website.  Such  reports  shall  contain  information
    31  concerning:
    32    (1) how to enhance state, local, and Tribal capacity to conduct public
    33  health research on COVID-19,  with  a  focus  on  expanded  capacity  to
    34  analyze  data  on  disparities  correlated with race, ethnicity, income,
    35  sex, age, disability status, specific geographic areas, and other  rele-
    36  vant  demographic  characteristics,  and an analysis of what demographic
    37  data is currently being collected about COVID-19, the accuracy  of  that
    38  data  and  any  gaps,  how  this  data is currently being used to inform
    39  efforts to combat COVID-19, and what resources are needed to  supplement
    40  existing public health data collection;
    41    (2)  how  to  collect,  process,  and  disclose to the public the data
    42  described in paragraph one of this subdivision in a way  that  maintains
    43  individual  privacy while helping direct the state and local response to
    44  the virus;
    45    (3) how to improve demographic data collection related to COVID-19  in
    46  the  short-  and  long-term, including how to continue to grow and value
    47  the Tribal sovereignty of data and information concerning Tribal  commu-
    48  nities;
    49    (4) to the extent possible, a preliminary analysis of racial and other
    50  demographic  disparities in COVID-19 mortality, including an analysis of
    51  comorbidities and case fatality rates;
    52    (5) to the extent possible, a preliminary  analysis  of  sex,  gender,
    53  sexual  orientation,  and gender identity disparities in COVID-19 treat-
    54  ment and mortality;
    55    (6) an analysis of COVID-19 treatment of  individuals  with  disabili-
    56  ties,  including  equity of access to treatment and equipment and inter-

        S. 2051                             5
     1  sections of disability status with other demographic factors,  including
     2  race,  and recommendations for how to improve transparency and equity of
     3  treatment for such individuals during the COVID-19 public  health  emer-
     4  gency and future emergencies;
     5    (7)  how  to support the state, local, and Tribal communities in order
     6  to eliminate barriers to COVID-19 testing and treatment; and
     7    (8) to the extent possible, a preliminary analysis of  state  policies
     8  that  disparately exacerbate the COVID-19 impact, and recommendations to
     9  improve racial and other demographic disparities in health outcomes.
    10    § 6. This act shall take effect immediately.
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