STATE OF NEW YORK ________________________________________________________________________ 5013 2023-2024 Regular Sessions IN SENATE February 21, 2023 ___________ 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. LBD09512-01-3S. 5013 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; andS. 5013 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; andS. 5013 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. 5013 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.