,i #aaith ,,congress #ast ,session ,h4 ,r4 #fgfg ,,in ,,the ,,house ,,of ,,representatives ,december #af1 #bjbe,ms4 ,tlaib 7for herself1 ,mrs4 ,dingell1 ,ms4 ,kelly of ,illinois1 ,ms4 ,stansbury1 ,ms4 ,barragn1 ,mr4 ,carson1 ,ms4 ,clarke of ,new ,york1 ,mr4 ,correa1 ,mr4 ,garca of ,illinois1 ,mr4 ,goldman of ,new ,york1 ,ms4 ,norton1 ,mr4 ,johnson of ,georgia1 ,ms4 ,lee of ,pennsylvania1 ,ms4 ,mc,collum1 ,ms4 ,ocasio-,cortez1 ,ms4 ,pou1 ,ms4 ,schakowsky1 and ,ms4 ,simon7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce ,a ,,bill ,to amend the ,public ,health ,service ,act to include ,middle ,eastern and ,north ,african 7,,mena7 individuals in the statutory definition of a racial and ethnic minority group1 to direct the ,secretary of ,health and ,human ,services to conduct a comprehensive study of ,,mena population health1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,health ,equity and ,middle ,eastern and ,north ,african ,community ,inclusion ,act of #bjbe or the ,health ,equity and ,,mena ,community ,inclusion ,act of #bjbe4 #b4 ,definition ,in this ,act1 the terms ,middle ,eastern and ,north ,african or ,,mena1 with respect to individuals or populations1 includes individuals or populations who identify with or belong to one or more nationalities or ethnic groups originating in a country 7or portion thereof7 in the ,middle ,eastern and ,north ,african region 7such as ,lebanese1 ,iranians1 ,egyptians1 ,moroccans1 ,yemenis1 ,chaldeans1 ,imazighen1 ,kurds1 ,palestinians1 and ,yazidis74 #c4 ,findings ,congress finds the following3 7#a7 ,on ,march #bh1 #bjbd1 the ,office of ,management and ,budget formally recognized ,middle ,eastern and ,north ,african populations in ,statistical ,policy ,directive ,number #ae 7in this section referred to as ,,spd #ae71 which established1 since its issuance in #aigg1 the minimum standards for the collection1 management1 and presentation of data on race and ethnicity4 7#b7 ,in #aihe1 the ,secretary of ,health and ,human ,services produced a ,report on ,black and ,minority ,health1 which analyzed persistent health differences between the general population and the non-,white populations recognized in ,,spd #ae and served as the basis for the foundation of the ,office of ,minority ,health 7in this section referred to as the ,,omh74 7#c7 ,through the establishment of the ,,omh in #aihf1 the ,secretary of ,health and ,human ,services has developed health policies and programs that eliminate health disparities and improve the health of racial and ethnic minority populations4 7#d7 ,congress has funded the ,,omh to ensure improved health status of racial and ethnic minorities1 and to develop measures to evaluate the effectiveness of activities aimed at reducing health disparities and supporting the local community4 ,the activities of the ,,omh have addressed health disparities1 including with respect to physical activity and nutrition1 clinical conditions1 individual social needs1 and the social determinants of health for racial and ethnic minority groups4 7#e7 ,before the amendments made by this ,act1 section #agjg7;g77#a7 of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #cjju-#f7;g77#a77 defined the term racial and ethnic minority group 7for whom the ,,omh works to improve health outcomes and eliminate health disparities7 to exclude ,middle ,easterners and ,north ,africans1 and thereby prevented ,,mena populations from accessing critical resources intended to assist historically marginalized communities4 7#f7 ,independent researchers and private sector research initiatives have found significant health disparities between ,,mena individuals and the non-,hispanic ,white population1 as well as significant overlap between the health outcomes and health conditions of ,,mena individuals and those of other racial and ethnic minority groups4 7#g7 ,poor health outcomes are often connected to impoverishment in other aspects of life and are exacerbated by additional barriers to access high-quality health coverage1 whether in terms of language1 eligibility1 health literacy1 or discrimination at the point-of-service4 7#h7 ,a recent study published in the journal1 ,proceedings of the ,national ,academy of ,sciences1 suggested that ,,mena individuals are not perceived as ,white and do not perceive themselves as ,white4 7#i7 ,research on the health outcomes and health conditions of ,,mena individuals is troubling and suggests that efforts must be made on the ,federal level to disaggregate the demographic data of ,,mena individuals from the demographic data of individuals in the non-,hispanic ,white category and fully understand the social determinants of health for health disparities and outcomes experienced by ,,mena individuals4 7#aj7 ,,mena individuals are not included among the groups for whom the ,,omh works to improve health outcomes and eliminate health disparities1 which further limits the opportunity of ,,mena individuals to access programs designed to address their experiences and health conditions4 7#aa7 ,the ,,omh could better assess and eliminate health disparities by conducting a comprehensive study of the health of ,,mena individuals and recognizing ,,mena individuals as a racial and ethnic minority group4 #d4 ,inclusion of ,middle ,easterners and ,north ,africans in definition of racial and ethnic minority groups 7a7 ,in general ,section #agjg7;g77#a7 of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #cjju-#f7;g77#a77 is amended by striking ,blacks2 and ,hispanics and inserting ,blacks or ,african ,americans2 ,hispanics2 and ,middle ,easterners and ,north ,africans4 7b7 ,sense of ,congress ,it is the sense of ,congress that subsection 7a7 should be implemented so as to ensure that-- 7#a7 the definition of a racial and ethnic minority group in section #agjg7;g77#a7 of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #cjju-#f7;g77#a771 as amended by subsection 7a71 is applied in the implementation and execution of ,federal programs and activities that reference such definition2 and 7#b7 no racial or ethnic minority group served by such programs and activities is negatively impacted by the amendment made by subsection 7a74 7c7 ,undefined references ,not later than #b years after the date of enactment of this ,act1 the ,secretary of ,health and ,human ,services shall-- 7#a7 identify all regulations1 guidance1 orders1 and documents of the ,department of ,health and ,human ,services for establishment or implementation of a health care or public health program1 activity1 or survey that-- 7,a7 use the term racial and ethnic minority group or similar terminology2 and 7,b7 do not define such term or terminology2 and 7#b7 take such actions as may be necessary to clarify whether the definition of racial and ethnic minority group in section #agjg7;g77#a7 of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #cjju-#f7;g77#a771 as amended by subsection 7a71 applies to such term or terminology4 7d7 ,report to ,congress ,not later than #b years after the date of enactment of this ,act1 the ,secretary of ,health and ,human ,services shall submit to ,congress a report on the implementation of this section4 #e4 ,report on health of ,middle ,eastern and ,north ,african population 7a7 ,study required ,the ,secretary of ,health and ,human ,services 7referred to in this section as the ,secretary7 shall conduct or support a comprehensive study regarding the unique health patterns and outcomes of ,,mena populations4 7b7 ,requirements for study ,the comprehensive study under subsection 7a7 shall include an enumeration of ,,mena populations across the ,united ,states1 disaggregated by subpopulation1 and with respect to each such population and subpopulation-- 7#a7 the rates of-- 7,a7 health risk factors1 including-- 7i7 behaviors1 such as tobacco use1 excessive alcohol consumption1 physical inactivity1 and unhealthy diet2 7ii7 physiological factors1 such as obesity1 diabetes1 high blood pressure1 high blood sugar1 and high cholesterol2 7iii7 environmental factors1 such as exposure to toxic chemicals1 air and water pollution1 and unsafe working conditions1 including prevalence of work-related injuries2 7iv7 genetic factors1 such as family history of chronic diseases1 presence of specific gene mutations1 and racial and ethnic predisposition to certain conditions2 7v7 demographic characteristics1 such as age1 geographic location1 and ,english language proficiency2 and 7vi7 social determinants of health1 such as household income1 health insurance coverage1 socioeconomic status1 education level1 housing instability1 educational and employment opportunities1 and access to culturally and linguistically appropriate service providers2 7,b7 prevalence of chronic disease or illness1 including-- 7i7 cancers1 such as breast1 lung1 cervical1 prostate1 colorectal1 liver1 stomach1 and oral cancer2 7ii7 cardiovascular conditions1 such as heart disease1 atrial fibrillation1 and stroke2 7iii7 respiratory conditions1 such as asthma1 chronic obstructive pulmonary disease1 and lung disease2 7iv7 musculoskeletal conditions1 such as osteoporosis and carpal tunnel syndrome2 7v7 neurological conditions1 such as ,parkinson's disease1 ,alzheimer's and other related dementias1 epilepsy1 and cerebral palsy2 7vi7 infectious diseases1 such as ,,hiv_/,,aids1 hepatitis ,b and ,c1 and tuberculosis2 and 7vii7 autoimmune diseases1 such as lupus1 multiple sclerosis1 ulcerative colitis1 and rheumatoid arthritis2 7,c7 prevalence of disability and disorder1 including-- 7i7 vision impairments1 such as blindness and low vision2 7ii7 hearing conditions1 such as deafness and varying degrees of hearing loss2 7iii7 physical impairments1 such as musculoskeletal conditions1 amputation1 paralysis1 repetitive strain injuries1 and other conditions that affect movement or require assistive devices2 7iv7 intellectual or developmental conditions1 such as ,down syndrome1 ,prater-,willi syndrome1 ,angelman syndrome1 autism1 and attention-deficit_/hyperactive disorder 7,,adhd71 as well as other conditions that affect cognitive abilities1 learning1 and adaptive behaviors2 7v7 mental or behavioral conditions1 such as depression1 anxiety1 insomnia1 sleep apnea1 bipolar disorder1 schizophrenia1 and traumatic brain injury2 7vi7 substance use disorders1 such as disorders in use of alcohol1 opioids1 stimulants1 and cannabis1 and risk factors stemming from such disorders1 such as liver damage and gastrointestinal issues2 7vii7 genetic or blood disorders1 such as sickle cell anemia1 ,g#f,,pd deficiency1 hypertension1 and thalassemia2 and 7viii7 endocrine disorders1 such as diabetes1 polycystic ovary syndrome 7,,pcos71 and hypothyroidism2 7,d7 maternal and reproductive health outcomes1 including maternal morbidity and mortality1 infertility1 and postpartum depression2 7,e7 nutritional health outcomes1 including malnutrition1 vitamin ,d and iron deficiencies1 among other vitamin deficiencies2 7,f7 child and adolescent health outcomes1 such as pediatric developmental delays1 childhood obesity1 and early-onset chronic conditions2 7,g7 dental and oral health outcomes1 including tooth loss1 gum disease1 and tooth decay2 7,h7 domestic violence1 dating violence1 sexual assault1 sexual harassment1 and stalking2 and 7,i7 morbidity and mortality1 including the rates of morbidity and mortality associated with the rates referenced in subparagraphs 7,a7 through 7,h72 7#b7 analysis of-- 7,a7 the factors and conditions that contribute most to-- 7i7 the rates described in paragraph 7#a72 and 7ii7 the rates by which ,,mena subpopulations reported the outcomes referenced in subparagraphs 7,b7 and 7,c7 as a disease1 illness1 disorder1 or disability2 7,b7 the leading causes of morbidity and mortality and pregnancy-associated morbidity and mortality2 7,c7 the extent to which access to health care facilities contributes to the associated outcomes of care1 including the rates described in paragraph 7#a72 and 7,d7 the disparities between ,,mena subpopulations and between the aggregate ,,mena population and other racial and ethnic populations in the rates described in paragraph 7#a72 7#c7 analysis1 enumeration1 or quantification of any other health or health-related parameters the ,secretary determines necessary2 and 7#d7 analysis of the extent to which any or all of the design1 implementation1 and evaluation of ,federal health programs contribute to the health factors1 outcomes1 and conditions described in paragraphs 7#a7 through 7#c74 7c7 ,consultation ,the ,secretary shall-- 7#a7 carry out this section in consultation1 as appropriate1 with the ,director of the ,census ,bureau1 the ,director of the ,centers for ,disease ,control and ,prevention1 the ,director of the ,national ,institutes of ,health1 the ,assistant ,secretary for ,mental ,health and ,substance ,use1 and other stakeholders 7including community-based organizations72 and 7#b7 determine through such consultation the subpopulations to be used for purposes of disaggregation of data pursuant to subsection 7b74 7d7 ,online portal ,upon conclusion of the comprehensive study under this section1 the ,secretary shall establish a public online portal to catalogue the results of the study1 its underlying data1 and information in the report submitted pursuant to subsection 7e77#b74 7e7 ,reporting 7#a7 ,interim report ,not later than #b years after the date of enactment of this ,act1 the ,secretary shall submit to ,congress a report outlining the challenges associated with1 and progress toward implementing1 health data collection for ,,mena populations as a distinct category and the plan for completing a comprehensive study regarding the unique health patterns and outcomes of ,,mena populations4 7#b7 ,final report ,not later than #cj days after the conclusion of the comprehensive study under this section1 and not later than #b years after the date of submission of the interim report under paragraph 7#a71 the ,secretary shall submit to ,congress a report describing-- 7,a7 the results of the study conducted under this section2 and 7,b7 the rulemakings and other actions the agencies described in subsection 7c77#a7 can undertake to more equitably include ,,mena individuals in their programs1 including whether and to what extent additional resources are needed to increase rates of response among ,,mena populations to ,federal health surveys4 7f7 ,privacy 7#a7 ,in general ,in carrying out the comprehensive study under this section1 the ,secretary shall implement robust privacy protections to safeguard the personal data of the individuals involved4 7#b7 ,minimum protections ,the privacy protections referred to in paragraph 7#a7 include the following3 7,a7 ,personally identifiable information1 such as names or addresses1 shall not be collected when unnecessary for the purposes of the study4 7,b7 ,any personally identifiable information that is collected shall be securely destroyed upon completion of the intended use of such information4 7,c7 ,all privacy protections and data handling procedures shall be clearly communicated to any individuals who may be subjects of the study1 including through informed consent if applicable4 7#c7 ,prohibition on inclusion of ,,pii in online portal or reports ,the ,secretary shall not include any personally identifiable information on the online portal under subsection 7d7 or in the reports under subsection 7e74 7g7 ,violations ,any person who1 by virtue of an official position or affiliation with the ,secretary-- 7#a7 has possession of1 or access to1 any record containing individually identifiable information the disclosure of which is prohibited by or under this section2 and 7#b7 knowingly discloses such a record to any person or agency not entitled to receive the record1 shall be guilty of a misdemeanor and fined not more than #be1jjj4 7h7 ,personally identifiable information defined ,in this section1 the term personally identifiable information means individually identifying information for or about an individual1 including information likely to disclose the location or specific identity of a participating individual1 regardless of whether the information is encoded1 encrypted1 hashed1 or otherwise protected1 including-- 7#a7 a first and last name2 7#b7 a home or other physical address2 7#c7 contact information 7including a postal1 email or internet protocol address1 or telephone or facsimile number72 7#d7 a social security number1 driver license number1 passport number1 or student identification number2 and 7#e7 any other information1 including date of birth1 racial or ethnic background1 or religious affiliation1 that would serve to identify any individual4 7i7 ,authorization of appropriations ,there are authorized to be appropriated such sums as may be necessary to carry out this section4