,i #aahth ,,congress #b;d ,session ,h4 ,r4 #hefe ,,in ,,the ,,house ,,of ,,representatives ,may #bc1 #bjbd,ms4 ,williams of ,georgia 7for herself1 ,ms4 ,underwood1 ,mrs4 ,gonzlez-,coln1 ,ms4 ,adams1 and ,mrs4 ,sykes7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce ,a ,,bill ,to advance research1 promote awareness1 and provide patient support with respect to endometriosis1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,endometriosis ,coverage1 ,awareness1 ,research1 and ,education ,act or the ,endometriosis ,,care ,act4 #b4 ,findings ,the ,congress finds as follows3 7#a7 ,endometriosis is a disease in which tissue similar to the lining of the uterus grows outside the uterus4 ,it can cause severe pain in the pelvis and make it harder to get pregnant4 ,endometriosis often causes severe pain in the pelvis1 especially during menstrual periods4 ,some people also have pain during sex or when using the bathroom4 ,some people have trouble getting pregnant4 7#b7 ,it causes a chronic inflammatory reaction that may result in the formation of scar tissue 7adhesions1 fibrosis7 within the pelvis and other parts of the body4 ,the cause of endometriosis is unknown4 ,there is no known way to prevent endometriosis4 ,there is no cure1 but its symptoms can be treated with medicines or1 in some cases1 surgery #c4 ,advancing endometriosis data collection1 surveillance1 and research 7a7 ,in general ,the ,director of the ,national ,institutes of ,health 7in this section referred to as the ,director7 shall conduct or support data collection1 surveillance1 and research related to endometriosis4 7b7 ,use of funds ,in carrying out subsection 7a71 the ,director may-- 7#a7 conduct or support research and related activities regarding endometriosis1 including research to improve treatment options and develop a cure for endometriosis2 7#b7 establish or expand an internet clearinghouse to catalog existing endometriosis research1 treatment options1 and related information for patients and health care professionals2 or 7#c7 carry out related activities as determined by the ,director4 7c7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #ej1jjj1jjj for each of fiscal years #bjbe through #bjbi4 #d4 ,identifying barriers to accessing treatments for endometriosis symptoms 7a7 ,research ,the ,secretary shall conduct an analysis of barriers that individuals diagnosed with endometriosis face in accessing treatments for endometriosis symptoms1 including transportation barriers and barriers caused by health care professional shortages4 7b7 ,topics ,in carrying out the analysis under subsection 7a71 the ,secretary may-- 7#a7 assess data from the ,transformed ,medicaid ,statistical ,information ,system related to services furnished to individuals diagnosed with endometriosis for the treatment of endometriosis symptoms under ,state ,medicaid programs and ,children's ,health ,insurance ,programs2 and 7#b7 assess data related to services furnished to individuals diagnosed with endometriosis for the treatment of endometriosis symptoms under group health plans or group or individual health insurance coverage offered by a health insurance issuer4 7c7 ,data collection ,to carry out the analysis under subsection 7a71 the ,secretary may require-- 7#a7 group health plans or issuers of group or individual health insurance coverage to provide such information as may be required to assess barriers that individuals diagnosed with endometriosis face in accessing treatments for endometriosis symptoms1 including a lack of insurance coverage or cost-sharing requirements for such treatments2 and 7#b7 ,state ,medicaid programs and ,children's ,health ,insurance ,programs to collect and report data related to services furnished to individuals diagnosed with endometriosis for the treatment of endometriosis symptoms through the ,transformed ,medicaid ,statistical ,information ,system1 including data stratified by relevant demographic characteristics4 7d7 ,privacy requirements ,in carrying out the analysis under subsection 7a71 the ,secretary shall ensure that the privacy and confidentiality of individual patients are protected in a manner consistent with relevant privacy and confidentiality laws4 7e7 ,report ,not later than two years after the date of enactment of this ,act1 the ,secretary shall submit to the ,congress and make publicly available on the website of the ,department of ,health and ,human ,services a report on the analysis carried out under this section4 #e4 ,education and dissemination of information with respect to endometriosis 7a7 ,endometriosis public education program ,the ,secretary shall develop and disseminate to the public information regarding endometriosis1 including information on-- 7#a7 the awareness1 incidence1 and prevalence of endometriosis1 with a particular focus on individuals from racial and ethnic minority groups and other underserved groups2 7#b7 culturally and linguistically appropriate support that is available to address the mental health impacts of endometriosis2 and 7#c7 the availability1 as medically appropriate1 of the range of treatment options for symptoms of endometriosis4 7b7 ,dissemination of information ,the ,secretary may disseminate information under subsection 7a7 directly or through arrangements with intra-agency initiatives1 nonprofit organizations1 consumer groups1 institutions of higher education1 or ,federal1 ,state1 or local public private partnerships4 7c7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #b1jjj1jjj for each of fiscal years #bjbe through #bjbi4 #f4 ,information to health care providers with respect to endometriosis 7a7 ,dissemination of information ,the ,secretary shall1 in consultation with relevant health care professional societies and associations1 disseminate information to health care professionals1 health care-related organizations1 and health systems to promote evidence-based care for individuals with endometriosis1 including information related to-- 7#a7 detecting and diagnosing endometriosis2 7#b7 providing care for individuals with endometriosis2 7#c7 communicating with patients about endometriosis2 and 7#d7 related topics4 7b7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #b1jjj1jjj for each of fiscal years #bjbe through #bjbi4 #g4 ,endometriosis disparities study through ,national ,academies 7a7 ,in general ,the ,secretary shall seek to enter an agreement1 not later than #ij days after the date of enactment of this ,act1 with the ,national ,academies of ,sciences1 ,engineering1 and ,medicine 7referred to in this section as the ,national ,academies7 under which the ,national ,academies agree to conduct a study on endometriosis disparities4 7b7 ,study requirements ,the agreement under subsection 7a7 shall direct the ,national ,academies to-- 7#a7 assess endometriosis prevalence1 detection1 treatment1 and outcome disparities by race1 ethnicity1 geography1 primary language1 sexual orientation1 gender identity1 disability status1 and insurance status1 and related topics as determined by the ,secretary2 and 7#b7 make recommendations to the ,congress1 ,federal agencies1 health care professionals1 and other relevant stakeholders based on the ,national ,academies' findings pursuant to paragraph 7#a74 7c7 ,report ,the agreement under subsection 7a7 shall direct the ,national ,academies to complete the study under this section1 and transmit to the ,congress and make publicly available a report on the results of the study1 not later than #bd months after the date of enactment of this ,act4 7d7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #ejj1jjj4 #h4 ,definitions ,in this ,act3 7#a7 ,the term institution of higher education has the meaning given to such term in section #aja of the ,higher ,education ,act of #aife 7#bj ,u4,s4,c4 #ajja74 7#b7 ,the term racial and ethnic minority group has the meaning given such term in section #agjg7;g7 of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #cjju-#f7;g774 7#c7 ,the term ,secretary means the ,secretary of ,health and ,human ,services4