S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   8360
 
                             I N  S E N A T E
 
                               May 19, 2020
                                ___________
 
 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.
   (g)  Communities  of  color experience higher rates of chronic disease
 and disabilities, such as diabetes, hypertension, and asthma, than  non-
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
              

                                                            LBD16382-01-0

 S. 8360                             2
 
 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
   (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.

 S. 8360                             3
 
   (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
   (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.

 S. 8360                             4
 
   (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-
 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;

 S. 8360                             5

   (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.