S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   2051
 
                        2021-2022 Regular Sessions
 
                             I N  S E N A T E
 
                             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:
 
   Section 1. Short title. This act shall be known and may  be  cited  as
 the "equitable data collection and disclosure on COVID-19 act".
   §  2.  Findings.  (a)  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.
   (b)  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.
   (c) Reports have shown  racial  inequities  in  COVID-19  testing  and
 treatment,  specifically  in communities of color and in Limited English
 Proficient (LEP) communities.
   (d) 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.
   (e)  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 their optimal health
 even when there is not a crisis of pandemic proportions.
   (f)  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.

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

                                                            LBD06222-01-1

 S. 2051                             2
 
   (g)  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.
   (h)  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 hospi-
 talization due to the 2009 H1N1 pandemic  among  the  poor,  individuals
 with  disabilities  and preexisting conditions, those living in impover-
 ished neighborhoods, and individuals of color and 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.
   (i)  Research  experts recognize that there are underlying differences
 in illness and death when each of these  factors  are  examined  through
 socioeconomic  and  racial or ethnic lenses.  These socially determinant
 factors of health accelerate disease and degradation.
   (j) Without clear understanding of how COVID-19  impacts  marginalized
 racial  and ethnic communities, there will be exacerbated risk of endan-
 gering the most historically vulnerable of our nation.
   (k) The consequences of misunderstanding the racial and ethnic  impact
 of  COVID-19  extends  beyond  communities  of  color such that it would
 impact all.
   (l) 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.
   (m) The dearth of racially and ethnically disaggregated data  reflect-
 ing  the  health  of  communities of color underlies the challenges of a
 fully informed public health response.
   (n) 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.
   § 3. Emergency funding  for  state  data  collection  on  the  racial,
 ethnic,  and other demographic disparities of COVID-19. Funding shall be
 appropriated from the general fund to conduct or support data collection
 on the racial, ethnic, and other demographic implications of COVID-19 in
 New York state, 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 state depart-
 ment of health agencies.
   § 4. COVID-19 data collection and disclosure. (a) Data collection. The
 commissioner  of  health,  shall  make publicly available on the depart-
 ment's website of the data collected  across  all  surveillance  systems
 relating to COVID-19, disaggregated by race, ethnicity, sex, age, prima-
 ry  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; and

 S. 2051                             3
 
   (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)  Timeline.  The  data  made  available under this section shall be
 updated daily throughout the public health emergency.
   (c) Privacy. In publishing data under this section,  the  commissioner
 of health shall take all necessary steps to protect the privacy of indi-
 viduals  whose  information is included in such data, including, but not
 limited to:
   (1) complying with privacy protections provided under the  regulations
 promulgated  under the federal Health Insurance Portability and Account-
 ability Act of 1996; and
   (2) protections from all inappropriate internal use by an entity  that
 collects, stores, or receives data, including use of such data in deter-
 minations  of  eligibility or continued eligibility in health plans, and
 from inappropriate uses.
   (d) Consultation with Indian tribes. The department  of  health  shall
 consult with Indian tribes and confer with urban Indian organizations on
 data collection and reporting.
   (f)  Report; public. No later than 60 days after the date on which the
 commissioner of  health  certifies  that  the  public  health  emergency
 related to COVID-19 has ended, a summary of the final statistics related
 to COVID-19 shall be made public.
   (g) Report; legislature. No later than 60 days after the date on which
 the  commissioner  certifies that the public health emergency related to
 COVID-19 has ended, the department of health shall compile and submit to
 the senate committee on health, the senate  committee  on  finance,  the
 assembly  committee  on  ways  and  means  and the assembly committee on
 health 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 such communities in future pandemics.
   §  5.  Commission on ensuring health equity during the COVID-19 public
 health emergency. (a) Establishment. No later than  30  days  after  the
 effective date of this act, the commissioner of health shall establish a
 commission,  to  be  known  as the "Commission on Ensuring Health 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)  The  Commission  shall  have  17
 members which shall consist of:
   (A) the commissioner of the department of health;
   (B) the secretary of state;
   (C) the commissioner of homeland security and emergency services;
   (D)  the director of the office of minority health and health dispari-
 ties prevention;
   (E) the director of the office of emergency management;
   (F) the director of the office of mental health;
   (G) three members appointed by the temporary president of the  senate;
 one  member  appointed  by  the  senate  minority  leader; three members
 appointed by the speaker of the assembly and one member appointed by the
 assembly minority leader; and

 S. 2051                             4
 
   (H) racially and ethnically diverse representation from at least three
 independent experts with knowledge or field experience with  racial  and
 ethnic  disparities  in  public  health appointed by the commissioner of
 health.
   (2)  The  commissioner  of the department of health 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 state  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 condi-
 tions,  removal  or  denial  of  disability related equipment, including
 ventilators and CPAP, and data on completion of DNR orders, and identify
 barriers in 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.  No  later  than 60 days after the effective date of this
 act, and every 180 days thereafter until the commissioner certifies that
 the public health emergency related to COVID-19 has ended,  the  Commis-
 sion  shall  submit a written report of its findings and recommendations
 to the governor and the legislature and post such report on the  depart-
 ment  of  health's  website.  Such  reports  shall  contain  information
 concerning:
   (1) how to enhance state, local, 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  rele-
 vant  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 one of this subdivision 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  commu-
 nities;
   (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 treat-
 ment and mortality;
   (6) an analysis of COVID-19 treatment of  individuals  with  disabili-
 ties,  including  equity of access to treatment and equipment and inter-

 S. 2051                             5
 
 sections 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  emer-
 gency and future emergencies;
   (7)  how  to support the state, local, and Tribal communities in order
 to eliminate barriers to COVID-19 testing and treatment; and
   (8) to the extent possible, a preliminary analysis of  state  policies
 that  disparately exacerbate the COVID-19 impact, and recommendations to
 improve racial and other demographic disparities in health outcomes.
   § 6. This act shall take effect immediately.