,,ii #aafth ,,congress #b;d ,session ,s4 #chej ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,june #a1 #bjbj,ms4 ,warren 7for herself1 ,ms4 ,harris1 ,mr4 ,booker1 ,mr4 ,markey1 ,mr4 ,merkley1 ,mr4 ,durbin1 ,mr4 ,van ,hollen1 ,ms4 ,baldwin1 ,mr4 ,carper1 ,mr4 ,kaine1 ,mr4 ,cardin1 ,ms4 ,klobuchar1 ,mr4 ,sanders1 ,mr4 ,whitehouse1 ,mr4 ,blumenthal1 ,mr4 ,brown1 ,mr4 ,warner1 ,ms4 ,stabenow1 ,mr4 ,peters1 and ,mr4 ,wyden7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,a ,,bill ,to require the ,centers for ,disease ,control and ,prevention to collect and report certain data concerning ,,covid-#ai4 #a4 ,short title ,this ,act may be cited as the ,equitable ,data ,collection and ,disclosure on ,,covid-#ai ,act4 #b4 ,findings ,congress makes the following findings3 7#a7 ,the ,world ,health ,organization 7,,who7 declared ,,covid-#ai a ,public ,health ,emergency of ,international ,concern on ,january #cj1 #bjbj4 ,by late ,march #bjbj1 there have been over #dgj1jjj confirmed cases of1 and #bj1jjj deaths associated with1 ,,covid-#ai worldwide4 7#b7 ,in the ,united ,states1 cases of ,,covid-#ai have quickly surpassed those across the world1 and as of ,april #ab1 #bjbj1 over #ejj1jjj cases and #bj1jjj deaths have been reported in the ,united ,states alone4 7#c7 ,early reporting on racial inequities in ,,covid-#ai testing and treatment has renewed calls for the ,centers for ,disease ,control and ,prevention and other relevant subagencies within the ,department of ,health and ,human ,services to publicly release racial and demographic information to better inform the pandemic response1 specifically in communities of color and in ,limited ,english ,proficient 7,,lep7 communities4 7#d7 ,the burden of morbidity and mortality in the ,united ,states has historically fallen disproportionately on marginalized communities 7those who suffer the most from great public health needs and are the most medically underserved74 7#e7 ,historically1 structures and systems such as racism1 ableism and class oppression1 have rendered affected individuals more vulnerable to inequities and have prevented people from achieving optimal health even when there is not a crisis of pandemic proportions4 7#f7 ,significant differences in access to health care1 specifically to primary health care providers1 health care information1 and greater perceived discrimination in health care place communities of color1 individuals with disabilities1 and ,,lep individuals at greater risk of receiving delayed1 and perhaps poorer1 health care4 7#g7 ,stark racial inequities across the ,united ,states1 including unequal access to stable housing1 quality education1 and decent employment1 significantly impact the ability of individuals to take care of their most basic health needs4 ,communities of color are more likely to experience homelessness and struggle with low-paying jobs or unemployment4 ,to date1 experts have cited that #b in #e ,latino residents in ,new ,york ,city1 the current epicenter of the ,,covid-#ai pandemic1 are recently unemployed as a direct consequence of ,,covid-#ai4 ,and at a time when sheltering in place will save lives1 less than #a in #e ,black workers and roughly #a in #f ,latino workers are able to work from home4 7#h7 ,communities of color experience higher rates of chronic disease and disabilities1 such as diabetes1 hypertension1 and asthma1 than non-,hispanic ,white communities1 which predisposes them to greater risk of complications and mortality should they contract ,,covid-#ai4 7#i7 ,such communities are made even more vulnerable to the uncertainty of the preparation1 response1 and events surrounding the pandemic public health crisis1 ,,covid-#ai4 ,for instance1 in the recent past1 multiple epidemiologic studies and reviews have reported higher rates of hospitalization due to the #bjji ,h#a,n#a pandemic among the poor1 individuals with disabilities and preexisting conditions1 those living in impoverished neighborhoods1 and individuals of color and marginalized ethnic backgrounds in the ,united ,states4 ,these findings highlight the urgency to adapt the ,,covid-#ai response to monitor and act on these inequities via data collection and research by race and ethnicity4 7#aj7 ,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 lenses4 ,these socially determinant factors of health accelerate disease and degradation4 7#aa7 ,language barriers are highly correlated with medication noncompliance and inconsistent engagement with health systems4 ,without language accessibility data and research around ,,covid-#ai1 these communities are less likely to receive critical testing and preventive health services4 ,yet1 to date1 the ,centers for ,disease ,control and ,prevention does not disseminate ,,covid-#ai messaging in critical languages1 including ,mandarin ,chinese1 ,spanish1 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 #aifd and subsequent laws and ,federal policies4 7#ab7 ,further1 it is critical to disaggregate data further by ancestry to address disparities among ,asian ,american1 ,native ,hawaiian1 and ,pacific ,islander groups4 ,according to the ,national ,equity ,atlas1 while #ac percent of the ,asian population overall lived in poverty in #bjae1 #ci percent of ,burmese people1 #bi percent of ,hmong people1 and #ba percent of ,pacific ,islanders lived in poverty4 7#ac7 ,utilizing disaggregation of enrollment in ,affordable ,care ,act-sponsored health insurance1 the ,asian and ,pacific ,islander ,american ,health ,forum found that prior to the passage of the ,patient ,protection and ,affordable ,care ,act 7,public ,law #aaa-adh71 ,korean ,americans had a high uninsured rate of #bc percent1 compared to just #ab percent for all ,asian ,americans4 ,developing targeted outreach efforts assisted #a1jjj1jjj people and resulted in a #ef-percent decrease in the uninsured among the ,asian1 ,native ,hawaiian1 and ,pacific ,islander population4 ,such efforts show that disaggregated data is essential to public health mobilizations efforts4 7#ad7 ,without clear understanding of how ,,covid-#ai impacts marginalized racial and ethnic communities1 there will be exacerbated risk of endangering the most historically vulnerable of our ,nation4 7#ae7 ,the consequences of misunderstanding the racial and ethnic impact of ,,covid-#ai expound beyond communities of color such that it would impact all4 7#af7 ,race and ethnicity are valuable research and practice variables when used and interpreted appropriately4 ,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 levels1 which resonate with historically vulnerable communities of color4 7#ag7 ,to date1 there is no public standardized and comprehensive race and ethnicity data repository of ,,covid-#ai testing1 hospitalizations1 or mortality4 ,the inconsistency of data collection by ,federal1 ,state1 and local health authorities1 and the inability to access data by public research institutions and academic organizations1 poses a threat to analysis and synthesis of the pandemic impact on communities of color4 ,however1 research and medical experts of ,historically ,black ,colleges and ,universities1 academic health care institutions which are historically and geographically embedded in minoritized and marginalized communities1 generally also possess rapport with the communities they serve4 ,they are well-positioned1 as trusted thought leaders and health care service providers1 to collect data and conduct research toward creating holistic solutions to remedy the inequitable impact of this and future public health crises4 7#ah7 ,well-designed1 ethically sound research aligns with the goals of medicine1 addresses questions relevant to the population among whom the study will be carried out1 balances the potential for benefit against the potential for harm1 employs study designs that will yield scientifically valid and significant data1 and generates useful knowledge4 7#ai7 ,the dearth of racially and ethnically disaggregated data reflecting the health of communities of color underlies the challenges of a fully informed public health response4 7#bj7 ,without collecting race and ethnicity data associated with ,,covid-#ai testing1 hospitalizations1 morbidities1 and mortalities1 as well as publicly disclosing it1 communities of color will remain at greater risk of disease and death4 #c4 ,emergency funding for ,federal data collection on the racial1 ethnic1 and other demographic disparities of ,,covid-#ai ,to conduct or support data collection on the racial1 ethnic1 and other demographic implications of ,,covid-#ai in the ,united ,states and its territories1 including support to assist in the capacity building for ,state and local public health departments to collect and transmit racial1 ethnic1 and other demographic data to the relevant ,department of ,health and ,human ,services agencies1 there is authorized to be appropriated-- 7#a7 to the ,centers for ,disease ,control and ,prevention1 #ab1jjj1jjj2 7#b7 to ,state and territorial public health agencies1 distributed proportionally based on the total population of their residents who are enrolled in ,medicaid or who have no health insurance1 #ae1jjj1jjj2 7#c7 to the ,indian ,health ,service1 ,indian ,tribes and ,tribal organizations 7as defined in section #d of the ,indian ,self-,determination and ,education ,assistance ,act71 and urban ,indian organizations 7as defined in section #d of the ,indian ,health ,care ,improvement ,act71 #c1jjj1jjj2 7#d7 to the ,centers for ,medicare ,medicaid ,services1 #e1jjj1jjj2 7#e7 to the ,food and ,drug ,administration1 #e1jjj1jjj2 7#f7 to the ,agency for ,healthcare ,research and ,quality1 #e1jjj1jjj2 and 7#g7 to the ,office of the ,national ,coordinator for ,health ,information ,technology1 #e1jjj1jjj4 #d4 ,,covid-#ai data collection and disclosure 7a7 ,data collection ,the ,secretary of ,health and ,human ,services 7referred to in this ,act as the ,secretary71 acting through the ,director of the ,centers for ,disease ,control and ,prevention and the ,administrator of the ,centers for ,medicare ,medicaid ,services1 shall make publicly available on the website of the ,centers for ,disease ,control and ,prevention data collected across all surveillance systems relating to ,,covid-#ai1 disaggregated by race1 ethnicity1 sex1 age1 primary language1 socioeconomic status1 disability status1 and county1 including the following3 7#a7 ,data related to all ,,covid-#ai testing1 including the number of individuals tested and the number of tests that were positive4 7#b7 ,data related to treatment for ,,covid-#ai1 including hospitalizations and intensive care unit admissions4 7#c7 ,data related to ,,covid-#ai outcomes1 including total fatalities and case fatality rates 7expressed as the proportion of individuals who were infected with ,,covid-#ai and died from the virus74 7b7 ,application of standards ,to the extent practicable1 data collection under this section shall follow standards developed by the ,department of ,health and ,human ,services ,office of ,minority ,health and be collected1 analyzed1 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 7#db ,u4,s4,c4 #cjjkk et seq474 7c7 ,timeline ,the data made available under this section shall be updated on a daily basis throughout the public health emergency4 7d7 ,privacy ,in publishing data under this section1 the ,secretary shall take all necessary steps to protect the privacy of individuals whose information is included in such data1 including-- 7#a7 complying with privacy protections provided under the regulations promulgated under section #bfd7;c7 of the ,health ,insurance ,portability and ,accountability ,act of #aiif2 and 7#b7 protections from all inappropriate internal use by an entity that collects1 stores1 or receives the data1 including use of such data in determinations of eligibility 7or continued eligibility7 in health plans1 and from inappropriate uses4 7e7 ,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 ,act4 7f7 ,report ,not later than #fj days after the date on which the ,secretary certifies that the public health emergency related to ,,covid-#ai has ended1 the ,secretary shall make publicly available a summary of the final statistics related to ,,covid-#ai4 7g7 ,report ,not later than #fj days after the date on which the ,secretary certifies that the public health emergency related to ,,covid-#ai has ended1 the ,department of ,health and ,human ,services shall compile and submit to the ,committee on ,health1 ,education1 ,labor1 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-- 7#a7 describing the testing1 hospitalization1 mortality rates1 and preferred language of patients associated with ,,covid-#ai by race and ethnicity2 and 7#b7 proposing evidenced-based response strategies to safeguard the health of these communities in future pandemics4 #e4 ,commission on ,ensuring ,heath ,equity ,during the ,,covid-#ai ,public ,health ,emergency 7a7 ,in general ,not later than #cj days after the date of enactment of this ,act1 the ,secretary shall establish a commission1 to be known as the 8,commission on ,ensuring ,heath ,equity ,during the ,,covid-#ai ,public ,health ,emergency0 7referred to in this section as the 8,commission07 to provide clear and robust guidance on how to improve the collection1 analysis1 and use of demographic data in responding to future waves of the coronavirus4 7b7 ,membership and chairperson 7#a7 ,membership ,the ,commission shall be composed of-- 7,a7 the ,director of the ,centers for ,disease ,control and ,prevention2 7,b7 the ,director of the ,national ,institutes of ,health2 7,c7 the ,commissioner of ,food and ,drugs2 7,d7 the ,administrator of the ,federal ,emergency ,management ,agency2 7,e7 the ,director of the ,national ,institute on ,minority ,health and ,health ,disparities2 7,f7 the ,director of the ,indian ,health ,service2 7,g7 the ,administrator of the ,centers for ,medicare ,medicaid ,services2 7,h7 the ,director of the ,agency for ,healthcare ,research and ,quality2 7,i7 the ,surgeon ,general2 7,j7 the ,administrator of the ,health ,resources and ,services ,administration2 7,k7 the ,director of the ,office of ,minority ,health2 7,l7 the ,director of the ,office of ,women's ,health2 7,m7 the ,chairperson of the ,national ,council on ,disability2 7,n7 at least #d ,state1 local1 territorial1 and ,tribal public health officials representing departments of public health1 who shall represent jurisdictions from different regions of the ,united ,states with relatively high concentrations of historically marginalized populations1 to be appointed by the ,secretary2 and 7,o7 racially and ethnically diverse representation from at least #c independent experts with knowledge or field experience with racial and ethnic disparities in public health appointed by the ,secretary4 7#b7 ,chairperson ,the ,president of the ,national ,academies of ,sciences1 ,engineering1 and ,medicine1 or designee1 shall serve as the chairperson of the ,commission4 7c7 ,duties ,the ,commission shall-- 7#a7 examine barriers to collecting1 analyzing1 and using demographic data2 7#b7 determine how to best use such data to promote health equity across the ,united ,states and reduce racial1 ,tribal1 and other demographic disparities in ,,covid-#ai prevalence and outcomes2 7#c7 gather available data related to ,,covid-#ai treatment of individuals with disabilities1 including denial of treatment for pre-existing conditions1 removal or denial of disability related equipment 7including ventilators and ,,cpap machines71 and data on completion of ,,dnr orders1 and identify barriers to obtaining accurate and timely data related to ,,covid-#ai treatment of such individuals2 7#d7 solicit input from public health officials1 community-connected organizations1 health care providers1 ,state and local agency officials1 and other experts on barriers to1 and best practices for1 collecting demographic data2 and 7#e7 recommend policy changes that the data indicates are necessary to reduce disparities4 7d7 ,report ,not later than #fj days after the date of enactment of this ,act1 and every #ahj days thereafter until the ,secretary certifies that the public health emergency related to ,,covid-#ai has ended1 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 ,services4 ,such reports shall contain information concerning-- 7#a7 how to enhance ,state1 local1 territorial1 and ,tribal capacity to conduct public health research on ,,covid-#ai1 with a focus on expanded capacity to analyze data on disparities correlated with race1 ethnicity1 income1 sex1 age1 disability status1 specific geographic areas1 and other relevant demographic characteristics1 and an analysis of what demographic data is currently being collected about ,,covid-#ai1 the accuracy of that data and any gaps1 how this data is currently being used to inform efforts to combat ,,covid-#ai1 and what resources are needed to supplement existing public health data collection2 7#b7 how to collect1 process1 and disclose to the public the data described in paragraph 7#a7 in a way that maintains individual privacy while helping direct the ,state and local response to the virus2 7#c7 how to improve demographic data collection related to ,,covid-#ai in the short- and long-term1 including how to continue to grow and value the ,tribal sovereignty of data and information concerning ,tribal communities2 7#d7 to the extent possible1 a preliminary analysis of racial and other demographic disparities in ,,covid-#ai mortality1 including an analysis of comorbidities and case fatality rates2 7#e7 to the extent possible1 a preliminary analysis of sex1 gender1 sexual orientation1 and gender identity disparities in ,,covid-#ai treatment and mortality2 7#f7 an analysis of ,,covid-#ai treatment of individuals with disabilities1 including equity of access to treatment and equipment and intersections of disability status with other demographic factors1 including race1 and recommendations for how to improve transparency and equity of treatment for such individuals during the ,,covid-#ai public health emergency and future emergencies2 7#g7 how to support ,state1 local1 and ,tribal capacity to eliminate barriers to ,,covid-#ai testing and treatment2 and 7#h7 to the extent possible1 a preliminary analysis of ,federal ,government policies that disparately exacerbate the ,,covid-#ai impact1 and recommendations to improve racial and other demographic disparities in health outcomes4 7e7 ,authorization of appropriations ,there is authorized to be appropriated such sums as may be necessary to carry out this section4